Locked out: Exclusion of deaf and deafblind BSL users from health and social care in the UK (full report – BSL and English versions)

Question 1

Foreword

Accepted Answer

https://www.youtube.com/watch?v=sXcipridXhI

As Co-Chair of the BSL Advisory Board, it is with immense pride that I present this report, “Locked Out: Exclusion of deaf and deafblind British Sign Language users from health and social care in the UK.” This document is not just a critical examination of current challenges; it is a powerful call to action and a roadmap towards a more inclusive and equitable future for BSL users within our health and social care systems.

The journey to this report has been one of collaboration, open dialogue, and a shared vision for a more inclusive society. We have engaged with a diverse range of stakeholders in the Health and Social Care sector, including Deaf individuals, Health care workers that are Deaf or have experience of working with Deaf patients, Deaf health and social care professional networks, organisations that support Deaf individuals, and researchers in the Deaf healthcare space. Their invaluable insights and experiences have shaped the recommendations and observations contained within these pages, ensuring that this report truly reflects the needs and solutions for the Deaf community in accessing health and social care services.

The British Sign Language (BSL) Act 2022 marked a pivotal moment, recognising BSL as a language of England, Wales, and Scotland. This legislation laid the groundwork for greater accessibility and inclusion, but it also highlighted the ongoing work required to fully realise its potential. This report delves into the progress made since the Act’s implementation, while also identifying the persistent challenges that continue to impact BSL users. From education and employment to healthcare and public services, we explore the multifaceted aspects of life where BSL accessibility remains crucial.

One of the key themes that emerges from this report is the importance of co-design and co-production. We firmly believe that genuine progress can only be achieved when policies and services are developed in partnership with the communities they aim to serve. The Government’s BSL Advisory Board, founded in 2023 following the passage of the BSL Act, has championed this approach and we urge all relevant bodies to adopt a similar philosophy. Listening to, learning from, and empowering BSL users are not just ideals; they are essential for creating meaningful and sustainable change.

While this report highlights the systemic barriers that have historically affected BSL users, it also underscores the incredible potential for positive change. We acknowledge the distressing reality of delayed diagnoses, inadequate treatment, and the emotional impact of communication breakdowns, but we strongly believe these are challenges we can, and must, overcome. The insights gathered here, from varying needs across England, Scotland and Wales to the critical shortage of qualified BSL-English interpreters, serve as a foundation for building stronger, more accessible services.

Crucially, this report moves beyond identifying problems to championing solutions. The recommendations put forward by the BSL Advisory Board are essential priorities designed to foster truly inclusive health and social care. We emphasize the compelling economic case for investing in BSL access, recognizing that proactive measures in early intervention and effective communication will lead to significant long-term savings and profoundly improved well-being for individuals and society as a whole. It is time to transform our systems, ensuring that BSL users can navigate health and social care with the dignity, understanding, and control they deserve.

I would like to extend my sincere gratitude to every member of the BSL Advisory Board for their tireless efforts, their expertise, and their unwavering dedication to putting together this incredible snapshot of the experiences of Deaf people. I would also like to thank and highlight the incredible work of Dr Jo Atkinson who has led in the collation and drafting of this report. Her commitment to evidencing the barriers in health and social care has been truly inspiring. I also wish to thank all the individuals and organisations who contributed their time, knowledge, and perspectives to this report. Your contributions have been invaluable.

Finally, I invite you to read this report with an open mind and a commitment to action. The progress we have made is a testament to the power of collective effort, but the journey towards full BSL recognition and accessibility is far from over. Let this report serve as a catalyst for continued dialogue, renewed commitment, and ultimately, a more equitable and inclusive future for all BSL users.

Craig Crowley MBE FRSA
Co-chair of BSL Advisory Board

Question 2

Executive summary

Accepted Answer

https://www.youtube.com/watch?v=6xJPDnc0u8Y

Within this report:

chapters 1 and 2 highlight the background and the higher levels of health and social care needs among deaf and deafblind people in the UK alongside poorer access and uptake of services^{[footnote 1]}
chapter 3 outlines the policy framework and challenges in each UK nation
chapter 4 interrogates the systemic issues that lock British Sign Language (BSL) users out of equal access to and use of health and social care provision
chapter 5 explores models for service delivery and commissioning
chapters 6 and 7 show how BSL users struggle to access every part of the health and social care systems and how systems do not always fulfil statutory duties towards these populations
chapter 8 considers the needs of intersectional groups within our BSL communities
chapter 9 outlines the specific challenges affecting deafblind BSL users
chapter 10 provides 12 essential priorities for access and equitable provision

An additional 18 areas for action are listed with detailed recommendations for addressing specific challenges and improving BSL provision. For deafblind people, there are 14 urgent improvements for their access to health and social care, and participation in society.

The lack of access to health and social care services faced by deaf and deafblind British Sign Language (BSL) users in the UK is a decades-long challenge – their systemic exclusion is entrenched and normalised as part of everyday life. It is much harder for them to access services that hearing people take for granted, such as contacting a GP to book an appointment, understanding treatments or knowing their name is called in a patient waiting room.

The comprehensive Locked out report highlights the known health and social care needs of these communities, the persistent barriers they face that lead to severe health inequalities and the lack of service engagement that results in considerable economic cost and unnecessary added burden and distress for deaf and deafblind people.

The BSL Act 2022 requires the government to report on the promotion and facilitation of BSL by ministerial departments with the aim to improve access to public services for BSL users and promote the use of BSL across society. The health and social care findings in this report are based on an ambitious scoping review conducted by the BSL Advisory Board on the current state of deaf and deafblind people’s access to services in England, Scotland and Wales.

Here are 12 essential priorities that will unlock health and social care access for BSL users, and provide a strong return on investment – cutting missed appointments, avoidable admissions, duplicated care and easing pressure on NHS and social care budgets.

12 essential priorities for BSL users

(1) Give BSL users greater control over interpreter bookings in health and social care settings, through a dedicated app or website (for example, the NHS App), with confirmation of an interpreter at their appointment.

(2) Implement and enforce the Accessible Information Standard (AIS) across all health and social care settings, including bringing section 95 of the 2022 Health and Care Act into force.

(3) Establish national video relay services (VRS) for England and Wales with 24/7 access (accessible 24 hours a day, 7 days a week) to enable deaf people to access public services.^{[footnote 2]}

(4) Ensure digital accessibility of NHS and social care platforms for BSL users, involving deaf and deafblind people in the design process.

(5) Mandate the collection of patient data about BSL as a primary language and disability status, to enable quality research.

(6) Establish a dedicated national BSL complaints service within each UK nation, run by an NHS or social care-affiliated deaf organisation.

Longer-term savings through impact on health inequalities

(7) Give mandatory deaf, deafblind and BSL awareness training for all NHS and social care staff.

(8) Publish statutory guidelines for BSL interpreter provision, stipulating the use of NRCPD-registered qualified BSL interpreters and stopping the use of children to interpret in public services.^{[footnote 3]}

(9) Direct commissioners to prioritise and engage the BSL community as a vital resource within commissioned services.

(10) Reintroduce and strengthen the role of specialist social workers and sensory teams for deaf and deafblind adults and children, across local authorities.

(11) Address language deprivation in deaf children through early and comprehensive BSL provision and support for families, requiring a cross-department government strategy with dedicated funding.

(12) Develop a national strategy to increase the number of specialist BSL residential care homes, day care and in-home support to meet urgent needs for older deaf people and older deafblind people.

For more details, please see our full recommendations in the section Our recommendations.

Terminology

With intersectionality in mind, this report employs a capital ‘D’ to show where the words ‘Deaf’ or ‘Deafblind’ are used specifically in a cultural sense (for example, Deaf community, Deaf culture, Deaf identity) but otherwise we use a small ‘d’ (for example, deaf people). Please see the glossary for greater insight into terms affecting the BSL community and the main legislation affecting the Deaf community.

The report also uses the term ‘BSL user’ to describe deaf or deafblind people who use BSL as their preferred language for communication. For more information, go to chapter 2 on background.

Question 3

1. Introduction

Accepted Answer

https://www.youtube.com/watch?v=8uOP77S31i8

For BSL users, inequality is entrenched and normalised as part of everyday life.

This report outlines the relentless frustration, access failure and systemic exclusion of deaf and deafblind people locked out of adequate NHS and social care, despite their higher levels of healthcare and mental healthcare needs.^{[footnote 4]}

The BSL Act 2022 requires the government to report on the promotion and facilitation of BSL by ministerial departments with the aim to improve access to public services for BSL users and promote the use of BSL across society. The health and social care findings in this report are based on an ambitious scoping review conducted by the BSL Advisory Board on the current state of deaf and deafblind people’s access to services in England, Scotland and Wales.

All members of the BSL Advisory Board are deaf or deafblind, have deaf parents or a deaf child. Each has personal experience and emotive stories of relentless difficulties accessing healthcare and social care. Our review was conducted over 12 months with presentations and submission of evidence from more than 60 relevant organisations, network groups and experts, who outline the main issues, gaps and potential solutions for improvements. A lifespan approach was taken with review of health and social care provision from birth to death. There was also consultation with minority groups, such as LGBT+ people.

Aside from a social justice reason for reducing exclusion, there is a clear economic case for inclusion. Deaf and deafblind people’s lack of access to timely preventative, treatment and care services cost HM Treasury millions, due to unmet needs, wasted appointments and delays in care. There are pressure points relating to deaf and deafblind people using the system, such as the astronomical costs of wasted appointments when interpreters are not provided, a deaf person cannot understand an appointment letter or contact a service to rebook appointments. The lack of social workers with specialist knowledge and skills to properly assess and understand needs, and the lack of care homes for BSL users, mean there are long delays in finding suitable care. This delays people being discharged, in turn affecting hospital flow and NHS productivity. One example is a deaf woman who spent 5 months sleeping in an A&E cubicle because no bed was available in mental health services with accessible BSL support.

Deaf charity SignHealth estimates the cost to HM Treasury of the failure to provide accessible health services to be at least £80 million to £100 million annually.^{[footnote 5]} And due to unmet health needs, there are also rising costs across a person’s lifetime.

Poor access for BSL users contributes to the estimated £1.2 billion annual cost of missed appointments and unnecessary repeat visits.^{[footnote 6]} The shift to phone-based services and telehealth has further excluded BSL users leading to higher costs, which could be avoided with communication support.

There is a clear economic rationale relating to employment and the economy. The government’s mission to kickstart economic growth, to build an NHS for the future and to break down barriers to opportunity must include BSL users. By meeting the needs of deaf and deafblind people, we also meet the needs of the NHS, social care and the taxpayer. Not meeting these needs leads to economic inactivity or underactivity. When their communication, health and social care needs are met, more people can be economically active, with less ill health, unemployment and underemployment.^{[footnote 7]} We advise the government to help more deaf and deafblind people into work and career progression, through better access to the health and social care systems – allowing us to contribute more to the Treasury through taxation.

Society is missing out

Deaf BSL users are strongly visual people and deafblind people often have a highly developed sense of touch (known as tactile abilities). Sensory differences enable them to develop unique skills, insights and perceptions. Through exclusion and overlooking the poorer health of our communities, UK society misses out on vast potential, innovation, problem-solving and original thinking – something that can help move the UK economy forward and benefit society.

1.2 Lack of access causes cumulative trauma, poorer health and increased taxpayer costs

BSL users experience negative emotional impact from repeated exclusion.^{[footnote 8]}

Our investigation took a trauma-informed approach to understanding how deaf and deafblind people are often traumatised by a lack of access to health and social care.^{[footnote 9]} This is because of serious and sometimes life-threatening errors that occur in their care and because access failures and exclusions occur repeatedly across a lifetime, causing accumulated trauma.^{[footnote 10]} Traumatisation occurs from the impact of repeated or prolonged access denials, failure of health and social care systems to recognise their needs and assess them appropriately, including under statutory duties, systematic neglect of their rights to service provision, barrier fatigue (the exhaustion felt from care failures and hurdles) and an inaccessible complaints system. Even when deaf people are consulted and asked to voice concerns, nothing changes – leading to avoidance of services, withdrawal and burnout.

Systematic ableism harms people and society

There is systematic ableism within public services which discriminates against those with disabilities.^{[footnote 11]} This includes specific types of ableism that affect those who cannot hear (audism) and those who are deafblind and require touch to communicate (distantism). This deepens inequality, affects the health and mental wellbeing of our communities, and results in poorer health and autonomy within our lives. This also harms society, due to increased demand on public services, creating long-term economic and social costs, and continuous burdens for the state.

Lived experiences

Poor communication and lack of control is causing trauma

They were pinning me down on the bed and I didn’t understand why. I was in pain and so dizzy. I couldn’t tell them I was going to be sick. I was trying to tell her but they couldn’t understand my speech. Because the nurse didn’t act quickly, I threw up all over the bed then saw her rush for a bowl. My mental health really suffered for a long time.

(Deaf BSL user)

She woke up and could not feel her arm or leg. There was no interpreter to explain that she had a stroke. We had no way of explaining. She was so distressed. Later, we realised that she thought we had injected her and paralysed her left side.

(NHS nurse in emergency care)

I asked for a female interpreter because of my past abuse experiences but they sent a man anyway. I have no control over who is going to turn up.

(Deaf BSL user)

I reminded the social services before not to text or email the client because of his limited capacity in understanding English. He was sent a long text from the social worker asking why he has stopped visiting his child. He …(understood) ‘stopped’ as ‘banned’ or ‘not allowed’ so he became distressed.

(Deaf specialist intermediary)

Vicious circle of poor service access

There is a vicious circle for BSL users that is caused by poor access to health and social care services.^{[footnote 12]} Repeated stress and persistent barriers result in frustration, helplessness and mistrust, greater anxiety and depression, and poorer mental and physical health in our population. This escalates needs and brings extra costs to the taxpayer.^{[footnote 13]}^{[footnote 14]} See figure 1.

Poorer health and mental health

greater need for services
less employment
less economic activity
escalating needs
greater cost to the state

This leads to… stressful interactions with public services

Inaccessible booking system:

will they try and phone me?
will I be discharged because I can’t use the phone?

Before appointment:

will an interpreter be booked?
will digital platforms be accessible?
I can’t let service providers know my needs without accessible channels
will the receptionist understand me?

Waiting room:

will I know my name is being called?

Appointment:

will I be able to communicate?
will the interpreter be qualified?
will they understand me?
will I understand my diagnosis?

After appointment:

will written information be accessible in BSL?

This leads to… cumulative trauma

access anxiety
lack of trust (needs won’t be met)
lack of control
lack of voice (inaccessible complaints system)
frustration, burnout and fatigue
disengagement, apathy and loss of hope

This leads to… missed appointments and avoidance of services

delayed, missed or cancelled appointments
avoidance of seeking services
discharge without being seen
high treatment attrition rates with BSL users not attending appointments or dropping out of support due to barrier fatigue
harmful to the health and social care system with missed opportunities for learning as fewer BSL patients are seen

This leads to… poorer health and mental health

Poor communication leads to exclusion

Poor communication between BSL users and public sector staff causes stress on both sides, resulting in missed appointments and delays. Staff teams are often overstretched with competing pressures, lack of clear processes, poor functionality in IT systems and lack of access to training.^{[footnote 15]} Research by RNID and SignHealth found that around half of BSL users didn’t understand their diagnosis, treatment or medication and did not get follow-up care.^{[footnote 16]} 95% of BSL users reported high levels of stress during their interactions with services and low levels of control.^{[footnote 17]} In particular, we found that the lack of confirmation that a BSL interpreter had been booked caused high anxiety. The majority experienced appointments where no interpreter attended their appointment despite being told that one would be provided (80%).^{[footnote 18]}

Telephone calls and voice messages are a consistent problem

Self-referral systems are only available online in English or by telephone.^{[footnote 19]} Three-quarters of BSL users struggle to book an NHS appointment due to inaccessibility, just under half have given up without making an appointment, and one-third missed appointments because they could not communicate with services to reschedule.^{[footnote 20]} As a result, BSL users do not receive services or are discharged without being seen and labelled as showing poor engagement because of not responding to calls. Ironically, this even happens in audiology departments where deaf awareness should be better.^{[footnote 21]}

Case study: Delayed diagnosis, delayed treatment and poor quality of care

My deaf husband passed away from motor neurone disease last year. We were both traumatised by spending the last few precious months of his life without any way of communicating with healthcare staff. We repeatedly asked for BSL interpreters but they were not provided. We struggled to complain to PALS [NHS Patient Advice and Liaison Service]. They were evasive and did nothing. All his appointments were urgent, so we had no choice but to attend without an interpreter. Then the consultants kept delaying my husband’s treatment because they couldn’t communicate with him! This caused extra stress and delays while we were so anxious about finding out what was wrong.

My husband was ready to go into the operating theatre and the whole team is panicking and saying, ‘Where is the interpreter?’. Then they used pen and paper to go through consent, anaesthetics and allergy checks. My husband could not read it, so I don’t think he really understood.

There were so many more appointments and still no interpreter, until eventually one did turn up, but he was not qualified or registered! He struggled in a technical conversation with the doctor. The doctor did not seem to be aware that we were not getting the full message because of the poor interpretation. Communication was just so awful!

Another unqualified trainee interpreter refused to interpret to ask my husband’s consent so the doctor would not go ahead with further tests. It really felt like my husband’s life was in their hands. We were ignored. It was just chaos.

Then at another appointment to receive the diagnosis yet another unqualified interpreter was booked. There were 7 medical staff in the room in intense discussion and when my husband answered their questions, the trainee interpreter did not understand him. We were so upset and frustrated because [we] received the absolute worse news that day, and this just made it all more traumatic. We couldn’t understand what we were being told. We received a letter about what was discussed and it was full of errors because the interpreter did not understand our signing.

In the end, there was a better interpreter and we quickly made progress with his appointments. But it was too late, my husband passed away not long after that.

I went to register his death and requested an interpreter. They refused and told me to bring a friend even though there were loads of questions. Then I had to communicate with the GP and the coroner’s office about the coroner’s report and there were more delays and cancelled appointments, and disagreements over who should pay for the interpreter! I am grieving and exhausted and still I have to chase my right to an interpreter, again and again. I look back on the terrible experiences and I still have not recovered. So much of it could have been avoided.

(Deaf BSL user)

Lack of trust

We found a deep-rooted lack of trust within deaf and deafblind communities based on repeated experiences of exclusion. There were deeply-held beliefs that the health and social care needs of the loved ones they cared for would not be met because services are not accessible or designed for BSL users. There was mistrust about receiving suitable care, worry about being understood or not understanding medical or social care information or receiving it in BSL.^{[footnote 22]} There is worry about untimely diagnoses, unequal treatment, the ability to navigate services or having rights under statutory social care recognised and met. Almost 60% of BSL users rate their experience of accessing healthcare as poor or very poor. Fewer than 1 in 5 said they could trust the NHS.^{[footnote 23]}^{[footnote 24]}

Currently, access typically requires BSL users to have high levels of motivation, perseverance with inaccessible systems and patience with the inexperience of professionals trying to meet their needs. Discrimination and attitudinal barriers were commonly reported. For example, healthcare providers may underestimate a person’s ability to understand or manage their health condition, to adequately parent their children, to define the needs of the person they care for, or to have the capacity to make decisions. Such assumptions can result in harmful decision-making or less thorough care.^{[footnote 25]}

A repeated theme among those we spoke to was avoidance of interaction with professionals and services due to inaccessibility. BSL users are avoiding services completely due to poor past experiences or missing appointments because they have no reassurance that their communication needs will be met.

Lived experiences

I avoid seeking medical care because of the communication barriers. From the point of being ill, to getting better, it is a nightmare. Trying to seek advice is impossible. Booking the appointment, I have to attend, knowing the diagnosis and treatment plan is impossible for me to understand. And for any follow-up care, I wouldn’t have a clue what to do without BSL support.

(Deaf BSL user)^{[footnote 26]}

Previously, I did not enjoy going to see my GP as it was so difficult to get an appointment and no interpreters. Knowing there will be interpreters at my appointments (via a confirmation text message) has brought me such relief. I am now taking better care of my health and looking after myself, which I couldn’t do previously. Which means I now see the doctor less.

(Deaf BSL user)

This cycle of access failure and avoidance causes poorer health outcomes for deaf and deafblind people, and poorer support for their social care needs at increasing cost to the NHS and the social care system. But our findings show this can be prevented, simply by confirmation via an accessible channel (for example, app notification, text, email) that their BSL needs will be met at each appointment.

Question 4

2. Background

Accepted Answer

https://www.youtube.com/watch?v=S0QQxNQv1rI

According to current UK census statistics, there are around 151,000 BSL users, of whom 87,000 are deaf.^{[footnote 27]} There are 25,000 people who use BSL as their main language.^{[footnote 28]} BSL is a distinct language from English and has its own community and culture. It is not a signed version of written or spoken English since its vocabulary and syntax are different. BSL users in the UK often face social exclusion as a direct result of linguistic exclusion. This is experienced daily, negatively affecting employment, education, wellbeing and access to health and social care systems.

2.1 Intersectional needs – both disability and culture

The needs of deaf and deafblind BSL users are intersectional, including disability access needs, communication support needs, and status as members of a language and cultural minority. The disability and language status, and the relevant legislation, should uphold deaf people’s human rights in health and social care settings. So providers must ensure both accessible and culturally-responsive services for BSL users.

2.2 Terminology within this report

With intersectionality in mind, this report employs a capital ‘D’ to show where the words ‘Deaf’ or ‘Deafblind’ are used specifically in a cultural sense (for example, Deaf community, Deaf culture, Deaf identity) but otherwise use a small ‘d’ (for example, deaf people, deaf population).

This report uses the term ‘BSL user’ to describe deaf or deafblind people who use BSL as their preferred language for communication. The terms ‘BSL community’ and ‘BSL signers’ are broader because they include hearing people who can sign and those who work with BSL users, including BSL interpreters and family members.

The term ‘BSL interpreter’ is used for conciseness instead of the more precise term ‘BSL-English interpreter’ which reminds us that the interpreter translates between 2 distinct languages, highlighting their role in facilitating communication for both hearing and deaf people.

The term ‘local authority’ is used within this report to mean unitary authorities and councils in Scotland and Wales as well as local authorities in England.

2.3 Varying needs of BSL users

BSL users vary in their needs. Most will need the use of interpreters or direct provision of information in BSL for most aspects of life, including access to health and social care. Many deaf people are affected by inaccessible education and the lack of high-quality sign language or bilingual teaching, so they may have poor literacy skills.^{[footnote 29]} This means that written English or subtitling is an inadequate alternative for their access. Instead, they will need BSL translation of written English documents, letters, websites and videos.

For some deaf people, the provision of BSL interpreters, or other forms of communication support, gives them enough autonomy to navigate life. For others, language deprivation due to poor early years intervention and education means that they will need more language support and advocacy than a standard interpreter can provide. The services of additional intralingual or relay interpreters and intermediaries who are deaf may be needed to modify BSL cultural content, simplify language and tailor information to their communication needs. Intralingual interpreters work within one language – BSL – providing different forms of that language to aid a person’s understanding.^{[footnote 30]} They often work alongside BSL-spoken English interpreters. Other people may need specialist deafblind support.

BSL-English interpreting

There are chronic shortages of all types of sign language interpreters in the UK, and a lack of gender and ethnic diversity in a profession that is predominantly White and female.^{[footnote 31]} Demand is increasing but there is no upscaling of training or apprenticeships. Rates paid by public service agencies are not always as high as for other types of interpreting work. 20.6% of interpreters accept work in healthcare settings and only 7.65% in mental health.^{[footnote 32]} Specific post-qualification training on interpreting in health and social care settings is available but not required to work.^{[footnote 33]} Some interpreters do not have the knowledge needed to understand specialist terminology and legal requirements in these fields.^{[footnote 34]}

Dispersed population

There are very few nationwide initiatives to deal with population health, which creates barriers to effective provision for a geographically -dispersed BSL population. Nationally commissioned, tailored support for BSL users would reduce many access problems. But localism and geographical bias in the way services and authorities are structured and commissioned do not serve the needs of deaf and deafblind people who are spread out and often socially isolated. They often have to travel long distances to see friends, to access suitable services or to attend accessible events, and often cannot communicate with families or neighbours. Locally-commissioned services often fail to provide the specialist support needed and there is an overreliance on BSL interpreters, rather than making provision available directly in BSL.

Access burden and fatigue

BSL users in the UK experience a large burden from ‘access labour’ and ‘access anxiety’. Access labour is defined as the large amount of personal and work administrative time spent requesting interpreters or other reasonable adjustments from public and private providers, and asserting rights to communication support.^{[footnote 35]} Access anxiety is caused by the uncertainty that access needs will be met in each situation. Access and barrier fatigue is also caused by the high levels of energy and effort needed to sort out access, and the experience of repeated barriers.^{[footnote 36]} This burden and mental exhaustion are disability-related taxes on time and personal resources, which has an effect on deaf and deafblind people’s progression at work, employability, stress, and physical and mental health.^{[footnote 37]}

Poorer health of BSL users

There is clear evidence that deaf BSL users have poorer health but there is no national strategy to address this.^{[footnote 38]} The 2014 SignHealth Sick Of It report identified healthcare inequalities with “poorer health, poorer diagnosis and poorer treatment/management … largely caused by poor access to services, poor communication, and poor access to information.”^{[footnote 39]} Under-diagnosis and under-treatment of potentially serious health conditions were found to be more common in BSL users. Diagnosed and undiagnosed high blood pressure was twice as common in deaf BSL users, and undiagnosed diabetes was 4 times as common. A significant percentage of deaf people with high blood pressure were unaware of their condition and even those diagnosed often struggled to manage it effectively. Communication barriers with healthcare providers meant they could not fully understand the steps needed to control their blood pressure or they missed crucial information about treatment. There was more obesity, undiagnosed high cholesterol and heart disease. Once diagnosed, deaf people were less likely than hearing people to be adequately treated. This led to a greater risk of preventable heart attacks, stroke and diabetic complications, including kidney failure and blindness. For example, only 42% of deaf people being treated for hypertension had adequate control, compared with 62% of the general population.^{[footnote 40]} These stark health inequalities persist despite deaf people being as active, eating as many vegetables, drinking less alcohol and smoking less than hearing people.^{[footnote 41]}

Data from surveys of diabetic dietary requirements at holiday camps attended each year by hundreds of BSL users aged 50 and above indicated that 7% had a diabetes diagnosis. This suggests that underdiagnosis and a lack of information about managing diabetes continue because this is well below the prevalence of diabetes in the general population (10%), and below the 11% of deaf people with diabetes symptoms that are included in the Sick Of It report sample.^{[footnote 42]}^{[footnote 43]}

Memory and cognitive testing data from the same holiday camps showed high rates of undiagnosed memory and cognitive impairments, dementia and learning disabilities. 14% of those aged 50 to 69 years had undiagnosed cognitive impairments.^{[footnote 44]}

There is a lack of more recent research but the causes of poorer health and undiagnosed cognitive impairments persist a decade later. BSL users experience ongoing exclusion from healthcare information, poor communication and persistent barriers to accessing primary care and hospital services.^{[footnote 45]}

Poorer mental health

BSL users are almost twice as likely to have mental health issues compared with the general population (40% against 25%), to experience all types of abuse and to have less access to services.^{[footnote 46]}^{[footnote 47]} When admitted to mental health hospitals, deaf people have twice the length of inpatient admission.^{[footnote 48]} Research shows that deaf signers have lower average health state values than people participating in the 2017 Health Survey for England. Those with depression (43%) had even more reduced health states.^{[footnote 49]} Young deaf people show poorer levels of wellbeing compared to the general population. The 2023 Shaping the Future report by SignHealth identified unequal mental healthcare for deaf people, missed opportunities for early intervention, and escalation due to systemic barriers in navigating the primary and secondary healthcare systems.^{[footnote 50]}

Question 5

3. Specific challenges within each UK nation

Accepted Answer

https://www.youtube.com/watch?v=q8c9nyV12mw

3.1 Policy and legal contexts

The Human Rights Act 1998 applies to the whole of the UK.^{[footnote 51]}^{[footnote 52]} The Equality Act 2010 forms parts of the law of England and Wales, and Scotland. Northern Ireland has its own equality legislation, including in relation to reasonable adjustments.^{[footnote 53]} Both acts give a clear obligation for service providers to ensure equal and fair access and support for BSL users, safeguarding their rights in accessing necessary services.

Health and social care services are devolved. The main policy and legal differences between the nations of Great Britain are outlined in the following section.

England

The AIS came into force in 2016, under section 250 of the Health and Social Care Act 2012.^{[footnote 54]} It requires publicly-funded health and social care organisations to identify, record, flag, share and meet the information and communication support needs of patients, service users, carers and parents with a disability, impairment or sensory loss. There is currently no equivalent legal standard in other UK nations. The AIS was welcomed by deaf and deafblind organisations. It gave them the legal right to receive access to health and social care information and communication in a way that works for their individual needs.

The AIS includes:

asking people if they have any information or communication needs (such as the need for a BSL interpreter)
recording and flagging those needs in the person’s file or notes
sharing information about people’s information and communication needs with other providers
being able to contact (and be contacted by) services in accessible ways, such as email, text message or a remote BSL-interpreter relay service
providing information and correspondence in formats they can read and understand, such as plain English or a BSL-interpreted version

The AIS has not been consistently implemented and lacks means of enforcement. Section 95, which gives new powers to the Secretary of State to enforce the AIS across the NHS, has not been enacted. The refreshed AIS 2025 included self-assessment frameworks as a step toward a mandatory AIS.^{[footnote 55]}

Scotland

The Scottish Parliament passed the British Sign Language (Scotland) Act 2015.^{[footnote 56]}

This requires listed public bodies to develop, consult on and promote government BSL plans, and increase awareness of the language.

A recent enquiry showed that the act has brought increased BSL visibility in Scotland, improved access to services and supported transformative initiatives such as Contact Scotland BSL, and national and authority plans have helped embed BSL into public service delivery. But it recognised that progress is uneven, inconsistently applied and there is a shortage of qualified interpreters, funding and resources.^{[footnote 57]}

There are community concerns about Scottish Government budget cuts, and that BSL plans and the sensory loss framework (See Hear strategy, 2014) may get lost within broader plans for disability and race within the Equalities Unit.^{[footnote 58]}

In Scotland, the Public Bodies (Joint Working) (Scotland) Act 2014 integrated health and social care. Local authorities and health boards are required by law to work together to plan and deliver adult community health and social care services through 31 partnerships across Scotland, with a focus on community services and prevention. The current review of NHS Scotland reform by the Scottish Parliament includes consideration of sensory loss and Deaf culture and accessible communication.

Wales

There is no Wales-specific BSL Act but a British Sign Language (BSL) (Wales) Bill has been proposed in the Welsh Parliament. There are All Wales Standards for Accessible Communication but these lack the legal framework that the AIS has in England.^{[footnote 59]}

3.2 BSL service provision and challenges in each nation

England

Access to the NHS and social care services is largely dependent on the provision of BSL interpreters.

England has relatively well-developed specialist mental health provision for BSL users, including:

3 inpatient units
4 regional community teams
talking therapies (BSL, Improving Access to Psychological Therapies (IAPT))
high, medium and low secure forensic units
locally-commissioned community mental health services in Bristol, Nottingham and South Yorkshire^{[footnote 60]}

There are only 4 regional Child and Adolescent Mental Health Services (CAMHS) teams for deaf children and families, and a child inpatient unit in London – the only one serving the entire country.

There is a commissioned monthly UK cognitive and memory disorders outpatients service based in London for BSL users with suspected dementia. It assesses one new patient per month. This service has long waiting times of over 10 months, and follow-up care and support are underdeveloped.

A doctor with BSL skills ran a London-based sexual health clinic, but this has now paused due to a lack of funding and commissioning.

Challenges in England

England lacks a national BSL VRS. This provision is limited to NHS 111 and 999 BSL.

During the pandemic, BSL Health Access, a 24/7 on-demand VRS service, was set up by SignHealth for one year.^{[footnote 61]} This helped deaf people communicate with GPs, dentists and hospitals, and supported paramedics and end-of-life discussions. NHS England accepted recommendations for a new national VRS service, but this remains unimplemented.^{[footnote 62]}

There are gaps in existing specialist mental health provision, and a lack of specialist pathways for BSL users with acquired brain conditions, brain injuries, attention deficit hyperactivity disorder (ADHD) and autism.

There is only one specialist nursing home in England for older BSL users on the Isle of Wight and one residential care setting in Derby.

Scotland

There is a high reliance on interpreters within the Scottish BSL provision model.

There is a limited specialist tertiary BSL mental health service providing consultancy and advice on local management of deaf people with moderate and severe mental health problems. Service demand outstrips supply and there is poor access to psychology and occupational therapy.

Scotland has had a national Scottish Government-funded VRS service since 2015. On-demand 24/7 provision of VRS BSL-English interpreting via a VRS service is an example of excellent practice which is not available elsewhere in the UK. This provides a level of independence for BSL users in Scotland who can use the service to engage with statutory services, access healthcare, get documents translated and make phone calls in their personal lives on a par with hearing people, even ordering pizza. The Contact Scotland BSL service takes 3,000 to 4,000 calls per month from deaf people.^{[footnote 63]}

Challenges in Scotland

There is little in-person specialist provision of services using BSL.

There is no talking therapy support for people with milder mental health problems.

There is no mental health service for deaf children and families.

BSL users who require inpatient mental health treatment are either sent to a BSL inpatient unit in Manchester – far away from their family and friends at a time when they need that support most – or they are admitted to local mental health units where they cannot communicate with anyone and experience high levels of distress as a result, escalating problems.

There are delivery challenges caused by geography and the remote highland and island terrain. Most BSL interpreters are in the central belt.

There are no dementia services or specialist care homes in Scotland for older BSL users.

E-learning platforms are different from those in NHS England, requiring separate development of training and resources.

Wales

Access to public services is dependent on BSL interpreter provision.^{[footnote 64]}^{[footnote 65]}

There is no national VRS service.

There is VRS for 999 BSL but not for NHS 111 Wales.

There is no specialist BSL service provision.

There is no mental health provision or talking therapy in BSL, with no services for adults or children.^{[footnote 66]}

There are no dementia services or specialist care homes in Wales for older BSL users.

There are few options for BSL support workers or in-home care.

Challenges in Wales^{[footnote 67]}^{[footnote 68]}

There are specific service-delivery challenges in Wales due to geographic terrain, lower population density and the need for bilingual Welsh-English delivery.

There are greater issues with recruitment and retention of BSL-skilled workers and BSL teachers, so it is harder for healthcare staff and families to receive BSL training locally.

Smaller local authorities need to work together to deliver specialist services across large geographical areas. There is a geographical divide between north and south Wales.

NHS Wales uses different e-learning platforms, which may be incompatible with the e-learning modules developed elsewhere in the UK.

Recruitment of BSL workers is often hindered by the need to know the Welsh language, which disadvantages deaf people and BSL signers from outside Wales.

There are acute shortages of BSL interpreters in Wales, particularly those who can translate between spoken Welsh and BSL (only 3 or 4 interpreters). There is no professional register.

If VRS is used, the interpreter on screen is often from outside Wales and unfamiliar with local Welsh signs, names, places and spellings.

Lived experience

Interpreters do not easily recognise my address, it is all in Welsh and often they do not know where Powys is and sometimes are unable to recognise this as a county. They have to identify which region of the UK I am in to make a call. I always type my address, as interpreters aren’t able to get the fingerspelling or pronounce it, as they are from outside Wales. They usually say it using the phonetic alphabet.

(Welsh BSL user)

Question 6

4. Systemic challenges

Accepted Answer

https://www.youtube.com/watch?v=pw0C-5Lj0tQ

Our review identified the systemic failings which are locking deaf and deafblind people out of fair and equal access to health and social care services. There are 4 main reasons:

lack of data and research
lack of BSL user access to information, advocacy, and health prevention and promotion
lack of implementation of the AIS in England
systemic barriers to AIS implementation

4.1 Lack of data and research

Deaf and deafblind communities are systemically locked out of the evidence-making process. Data about BSL, deafness or disability status is not routinely collected in NHS or social care data-recording systems. Without data, research and opportunities for funding are less likely.

BSL users are locked out of research participation and research careers

BSL users are routinely excluded as research participants, from taking part in clinical trials, and from public involvement and engagement in research panels.^{[footnote 69]}^{[footnote 70]}

The careers of deaf and deafblind researchers are held back by insufficient funding of BSL interpreters by the Disabled Students’ Allowance (DSA) or Access to Work (AtW), and inequalities in research environments. Funding for health and social care research is hampered by grant criteria that favour studies with an impact on large populations. It is difficult to get funding for small, geographically-dispersed populations. Emphasis on equity, diversity and inclusion in health and social care research largely focuses on either:

ethnicity, under which deaf BSL users are rarely classified
disability, which systematically excludes minority language groups such as deaf BSL users because language data is not collected

Issues with data recording

Lack of data and research are significant reasons for the ongoing health and social care exclusion for BSL users.^{[footnote 71]} There are 2 parts to the problem: data is not being collected and stored correctly, and data is not being recorded in the right way.^{[footnote 72]} For example, a patient may have been identified as deaf with one service, but this does not transfer to other public systems, preventing other services from accessing it.

Within current systems, BSL service users and carers are invisible and rarely recorded as deaf, deafblind or as a language group. Instead, data is lost in disability categories that lack specificity. It is impossible to identify BSL users from how NHS and social care systems classify people for their records.^{[footnote 73]} Questions consistently fail to separate BSL users from broader deafness categories, including those with age-related hearing loss who have very different needs. Most service providers cannot say how many deaf and deafblind BSL users they serve, or have a duty to serve (in the case of social services). For this reason, resources are never adequately costed or allocated. For example, in England, local authorities cannot report how many deaf BSL users have a personal budget following a Care Act assessment because BSL status is not recorded. A health authority cannot say how many BSL users had accessed a particular clinic or service or received treatment for a long-term health condition. NHS Digital does not include BSL as an option in most of its data sets. It is vital that NHS Digital and surveys used in epidemiology, such as the Health Survey England and Adult Social Care Client-Level Data, collect BSL user data.^{[footnote 74]}^{[footnote 75]} Ethnic sample boosts are used to get better data on underrepresented groups. With better recording, a similar approach could be used to obtain robust BSL-user data.

Lack of evidence

Limited routine data recording means there is a permanent lack of evidence on both service provision and health and social care outcomes in BSL users. Specific deaf and deafblind BSL populations cannot be identified within larger data sets, creating barriers to secondary data analysis. Crucially, without research evidence, there is limited knowledge of the scale of unmet need, and no funding or resource allocation for the development of services, adaptations and innovations to meet the needs of BSL users, or to address health and social inequalities. This means there is a lack of research about key indicators of health in BSL users – for example, life expectancy, healthy life span, prevalence of death in childbirth or neonatal mortality in their offspring – or access to the 8 care processes for those with diabetes, the dementia diagnosis rate, or how many experiencing a suspected stroke receive immediate access to brain scans. There is no specific data on the extent to which statutory powers, responsibilities and duties are equitably enacted for deaf and deafblind people. The lack of reliable research data extends to the wider social determinants of deaf and deafblind health, such as income, poverty, education, work, housing, family relationships, diet, exercise and environment. Without data and evidence, disparities that cause and perpetuate inequality cannot be addressed.

Good practice

Manchester University NHS Foundation Trust’s web platform and patient app include a comprehensive electronic patient record system. Staff can designate or patients self-record BSL as their preferred language. From routinely-collected data that is centrally stored, this allows large-scale secondary data analysis of healthcare delivery and health outcomes.

Missed opportunities from previous reviews

The issues for BSL users have been extensively documented in government, academic and campaign reports. There have been missed opportunities for learning and improvements because the recommendations of previous reviews have not been put into action. These reports are listed in Annex B. The recommendations of NHS England’s rapid review of BSL interpreting, including a responsive VRS service for healthcare like that offered during the COVID-19 pandemic, remain unimplemented due to a lack of long-term funding.^{[footnote 76]} This is despite its proven value and the NHS’s own recommendations.

The use of real-time digital interpreting solutions stops delays in urgent care. However, the closure of BSL Health Access is a step backwards in equitable access and highlights the fragility of ad-hoc or charity-funded solutions to what is ultimately a statutory responsibility.

4.2 Lack of access to information, advocacy, health prevention and promotion for BSL users

Health literacy gaps

Many people whose main language is BSL face challenges accessing health knowledge due to a lack of information in BSL or using visual illustrations.^{[footnote 77]} Literacy difficulties mean that written information, websites and medication instructions may be inaccessible. Limited information in BSL stops healthcare navigation, the development of health knowledge, participation in screening and services, self-management of conditions, involvement in treatment decisions, and the exercise of choice in decision-making, resulting in systemic healthcare inequality for sign language users.^{[footnote 78]}^{[footnote 79]}^{[footnote 80]} The health literacy gap means that deaf people may not be familiar with terms such as ‘diabetes’ or ‘cholesterol’ and may not understand their medication or how to take it correctly.^{[footnote 81]}^{[footnote 82]}^{[footnote 83]} Material could be made accessible through video translation into BSL. However, NHS material is not consistently translated. Materials that have been translated are hard to find, so there needs to be better promotion. The most effective BSL information is produced by deaf people for deaf people.

COVID-19 pandemic

There was a lack of BSL information during the pandemic. 78% of deaf signers surveyed found government COVID-19 information to be partly or completely inaccessible.^{[footnote 84]} In England, BSL interpreters were provided for some public COVID-19 briefings. More than 26,000 people signed a petition asking for BSL interpretation for briefings.^{[footnote 85]} Shielding letters and legal guidelines were only provided in English.^{[footnote 86]} Although it was the government’s responsibility to provide accessible information, it failed to do so. Because of this, SignHealth translated 175 government briefings and shielding letters and 95% of the Deaf community said they found these helpful.^{[footnote 87]}^{[footnote 88]}

Good practice

In England and Wales, searching for BSL translations on NHS websites is difficult as videos are not collated in one place or on one YouTube channel. NHS Mersey Care provides the most accessible example we could find with BSL self-help videos and other accessible formats.^{[footnote 89]}

In Scotland, NHS Inform provides an excellent webpage with BSL translations of healthcare information collated in one place.^{[footnote 90]}

The SignHealth charity provides a BSL Health Library with 376 health information videos, which have been accessed by 31,787 people in the past year, demonstrating a clear demand for BSL information.^{[footnote 91]}

Challenge of ensuring effective access to information

Another systemic issue is that accessibility can often be taken as just adding BSL translation to existing material without considering how well the BSL audience can understand it. Simple translation often does not provide effective understanding because many deaf people lack the basic healthcare knowledge that is assumed in information targeting the general population. Viewers may struggle to absorb information from interpreted videos because the format does not fit with the way BSL is structured or how many signers learn. Often videos are not designed with BSL viewers in mind, meaning that attention must be split between the interpretation and the visuals.

Adopting a principle of effective BSL access (delivered by deaf people for deaf people)

It is important that healthcare providers move away from providing long streams of translated BSL on their videos, which provide a limited form of access but not true understanding. This means working with the Deaf community and deaf translators to produce culturally and linguistically attuned NHS healthcare and social care information that can be clearly understood by most BSL users.^{[footnote 92]} Research consistently shows that deaf people better understand and trust health information when it is translated and presented by other deaf people. This ensures linguistic accuracy, cultural relevance and visual clarity.^{[footnote 93]} This approach is termed ‘dynamic translation’, which involves providing the essence of the information by adapting it culturally to the target audience to ensure that it is understood and resonates. This demands a flexible approach and an openness to departing from the English source to restructure into more effective formats. One example might be showing 2 BSL users in conversation – a kind of Q&A – which breaks up information into manageable chunks.^{[footnote 94]}

Another approach might be to provide tailored examples that make the information more relatable to the deaf experience, and easier to understand and remember. Visual aids to understanding should be included in videos, on websites and in written materials (for example, pictures, cartoons, simple diagrams). Employing skilled deaf translators to provide dynamic information will result in more effective access and better use of public money.

Advocacy

Some BSL users require advocacy support to explain information, literacy support, assist with navigating complex health and social care systems, and ensure that BSL communication support is booked. In the past, advocacy was provided by social workers for deaf people but there is now an inconsistent ‘postcode lottery’ of charity and local authority provision, with many areas providing no BSL advocacy support. Many wrongly think that interpreters can provide advocacy but this is not part of their role and they are not trained as advocates.^{[footnote 95]}

Effective BSL advocacy and BSL intermediary services can lead to significant cost savings by improving access to services, addressing issues early before they escalate into more expensive problems, and preventing long-term support needs. For example, in healthcare, clear communication about a patient’s condition or treatment can prevent misdiagnoses or errors in medication, saving healthcare costs. In statutory child protection work, the provision of a skilled specialist (advocate, intermediary or specialist social worker) before family court proceedings has been recommended in a judge’s ruling to prevent unnecessary court time and distress.^{[footnote 96]}

Case study: How advocacy provides health savings

The Jewish Deaf Association (JDA) provides advocacy and support for all aspects of health and social care.^{[footnote 97]} A BSL advocate who understands the culture and needs of deaf and deafblind people accompanies BSL users to appointments to ensure health practitioners understand needs, and that all information, processes, diagnoses, treatments and next steps are understood by the deaf person.

David is deaf, aged 84 years, uses BSL and lives alone. His GP refused to book an interpreter for his appointments, insisting that pen and paper were a good enough way to communicate. This resulted in 5 years of medical neglect, including failing to diagnose a fractured wrist following a fall. When Michael had a heart attack, the JDA was called and assisted the emergency paramedics with communication because there was no interpreter. A JDA support worker visited Michael daily in the hospital to advocate and help with communication, ensuring that interpreters were booked and that he received overdue tests. This led to the diagnosis of several other preventable health conditions and it was found he was taking medication that was dangerous for his heart condition.

In 2024, the JDA provided support with accessing health information and in health settings on 2,246 occasions, enabling NHS appointments to proceed and be effective, even when interpreters were not available. This saved the NHS up to £337,000 in missed appointments and interpreting costs, and ensured deaf people had more equal and timely access to the NHS.

Northumbria Healthcare’s BSL Health Navigator project is provided by DeafLink, a community-based charity across 3 hospital trusts.^{[footnote 98]}^{[footnote 99]} It significantly improved deaf people’s access to healthcare by addressing barriers and providing targeted support.

An evaluation shows that the programme was economically efficient, making savings by identifying and addressing systemic barriers, reducing missed appointments, reducing complaints and increasing interpreting provision. The number of bookings increased from 70% to 90%, with improvements in patient experience, trust and health literacy. For example, this scheme enabled BSL users to provide informed consent for treatment 344 times over 9 months, reducing delays and enabling 230 appointments to go ahead rather than being missed.

Health prevention and promotion

There is a lack of targeted health promotion for BSL users. A national strategy is required to reduce inequalities and ill health. BSL-dedicated messaging is essential because research has shown that health promotion designed for hearing people is not reaching all BSL users.^{[footnote 100]} There is a lack of information about healthy eating, exercise, stopping smoking and the importance of immunisation and health screening. Knowledge about sexual health is lower among deaf people.^{[footnote 101]} Sign language users are also less likely to join a gym, exercise classes and weight-loss clubs due to communication issues.^{[footnote 102]} It is currently not possible to receive an NHS health check from a nurse who uses BSL.^{[footnote 103]}

The NHS Core20PLUS5 framework states that ‘PLUS’ populations – those experiencing worse-than-average health outcomes – should be identified at a local level, including people with protected characteristics. However, deaf BSL users are rarely identified or prioritised within this process. Deaf BSL users are often not recognised as a distinct language and cultural group in health inequality work, resulting in their exclusion from targeted interventions and data monitoring.

Good practice

SignHealth provided video relay service (also known as a video interpreting service) access to information about vaccinations and COVID-19 tests during the pandemic.^{[footnote 104]}

4.3 Lack of implementation of the Accessible Information Standards in England

There was consensus among the 60 organisations, professional networks and experts we consulted that the AIS has not been consistently implemented and lacked means of enforcement.

Joint research by several charities found that:

67% of deaf people reported that they had no accessible method of contacting their GP
81% of patients reported having an appointment where their communication needs were unmet
one-third of staff were not aware of the AIS^{[footnote 105]}^{[footnote 106]}

Work by SignHealth shows that deaf people continue to experience a lack of accessible communication as a barrier to:

making appointments
communicating with healthcare professionals
finding out test results
receiving information or medication instructions on discharge from hospital

There is a lower quality of healthcare, including situations that could put deaf patients at serious risk.^{[footnote 107]}

Lack of AIS access for BSL users who are caring for others

The NHS constitution commits to values of respect, compassion, and the full involvement of carers in care processes. It promises that carers will be recognised, listened to and supported.^{[footnote 108]} But for many deaf and deafblind carers who use BSL, these commitments are unmet. There is a systemic lack of recognition of the needs of deaf family members, parents, partners and other carers. Their needs are then overlooked within current healthcare and social care systems, increasing their isolation, stress, burden and burnout. Those they are caring for may be deaf and use BSL, or hearing and use spoken language.

Deaf carers are often marginalised due to ineffective communication with health and social care staff and a lack of necessary AIS adjustments. This prevents them from attending appointments and discussing their loved one’s needs and the quality of the care they receive.^{[footnote 109]}^{[footnote 110]}^{[footnote 111]} The AIS applies to deaf or deafblind carers attending appointments with a hearing person they are looking after. But in practice, BSL-using carers are often told that systems will not allow an interpreter to be booked unless a deaf person is the patient.^{[footnote 112]} They have to attend appointments with the hearing person they are caring for, without being able to take part in the consultation. This makes it difficult to stay informed about their loved one’s care plan, advocate for their needs, and make informed decisions about their care.

This lack of access extends beyond individual conversations. Deaf carers may struggle to navigate the healthcare system, access support services or advocate effectively for themselves and others. The resulting isolation places their health and wellbeing at serious risk.

There is a lack of tailored support and resources for deaf carers, including the provision of interpreters for carer support groups or BSL-carer support groups (where only deaf people go), which can affect their ability to effectively care for their loved ones. For example, deaf carers may be unaware of their rights to support under the Care Act 2014 or their eligibility for a carer’s assessment because access to information is not available in BSL.

This failure not only contradicts the NHS’s stated values of respect, inclusion and compassion. It also undermines deaf carers’ rights. It places both the carer and the person receiving care at greater risk of poorer health outcomes.

Lived experiences

I am experiencing high levels of anxiety from persistent access issues and these continue. It is to the point where I am now freezing with fear at this, and it is overwhelming because external barriers and people’s attitudes are outside of my control. This lack of communication I believed contributed to dad’s death too. I don’t think the health service understands the cumulative impact of inaccess.

(Deaf carer)

My mum was seriously ill on the ward. I was told to phone for updates but there is no VRS service. When I said I was deaf, the hospital offered to email me, then they didn’t. I complained and they said again that I needed to phone them. But I am deaf! I told (the nurse), “you might have my email but from past experience no-one actually emails”. I finally received an update 5 days after mum’s admission. This email stated, “They are so busy that they can easily forget to email you, I’m sorry.” I am mum’s sole carer but because I cannot use a voice phone, it is more convenient for hospital staff to speak with my sister who is in the USA, because she can use the phone. There is a lot of additional baggage for deaf carers well beyond what other carers experience. Deaf people can’t access usual carer networks either.

(Deaf carer)

I left the hospital stressed, upset and exhausted at having to continually raise access issues and ask for adjustments so that I could support my mum. Staff do not always understand how their decisions have a profound impact on me and my family. If the hospital could call me via VRS just like they would call any other relative that would improve things so much.

(Deaf carer)

The Accessible Information Standards do not extend to the private sector

AIS and other UK guidance do not extend to private health and social care providers, including dentists and opticians. These are included under the Equality Act 2010. However, there is no means of enforcement for individuals, with private providers often lacking knowledge of their duties. This means that deaf and deafblind people lack choice and alternatives. They are often shut out of receiving public-sector provision and private care.^{[footnote 113]} Enforceable standards are vital for the private sector. Current legislation does not help BSL users access the private sector without significant labour, time and financial burden to fight for these rights through the courts.

4.4. Systemic barriers to Accessible Information Standards implementation

Our review identified 11 systemic barriers:

lack of expertise within care inspectorates
lack of BSL complaints process
digital systems unsuitable for AIS implementation
digitisation of services creating new barriers
poor awareness of AIS among service providers and users
lack of mandatory staff training
lack of standardised processes
shortage of qualified BSL-English interpreters
overreliance on interpreter agencies
lack of shared information for accessibility between services and agencies
lack of VRS BSL-interpreting services in England and Wales

Lack of expertise within care inspectorates

Organisations which are responsible for inspecting and regulating health and social care services are:

England – Care Quality Commission (CQC)
Scotland – Care Inspectorate
Wales – Care Inspectorate Wales

The CQC in England currently lacks the powers, remit, suitable inspection frameworks, the specialist skills and awareness of access issues to enforce the AIS for BSL users.

We identified the following issues:

inspectors’ lack of knowledge and expertise about BSL, deaf and deafblind people or a good understanding of what specialist BSL services or accessible mainstream services should look like
inspectors’ lack of understanding of the variability in the quality of BSL interpreters or BSL provision or services
inadequate understanding of the needs of deaf and deafblind BSL users or how to assess whether services are meeting these needs, meaning that they may miss critical issues during inspections
failure to recognise inequalities, delays, misdiagnosis, barriers and single points of failure making it harder to assess whether services are providing adequate and equitable care
lack of training and awareness among inspectors about the systemic challenges that BSL users face when interacting with service providers, creating a risk that shortcomings go unaddressed during inspections
not building sufficient capacity and engagement by failing to employ deaf BSL experts or consulting with deaf organisations and the Deaf community about service barriers or improvement recommendations
limited deaf or BSL representation among inspectorate staff, which limits true understanding of BSL Deaf and Deafblind communities

Lack of BSL complaints process

BSL users do not have any accessible channels for making complaints about health and social care or contracted interpreting agencies. As a result, services are unaware of, and unable to learn from, access failures. BSL users go largely unheard and cannot advocate for their needs when experiencing unsatisfactory or discriminatory treatment. Complaints procedures rely on inaccessible channels using the telephone, spoken language or written English. There is no nationally co-ordinated way to complain using BSL. The advocacy services intended to support people in making complaints about NHS care are also inaccessible as they typically require people to make a phone call or send an email in written English – with no option to use BSL. Commissioners and managers often wrongly see a lack of complaints as sign of satisfaction with provision and interpreting services. In reality, BSL users are often deeply unhappy but are locked out from the complaints process.^{[footnote 114]} BSL users are reluctant to complain about interpreting services as they are worried it could have an effect on the service they receive within BSL communities.^{[footnote 115]} The difficulties of making a formal complaint and the lack of trust that things will improve mean that BSL users often become burned out and apathetic.^{[footnote 116]} Data is not recorded about the numbers of complaints from BSL users in each area. This means their concerns get lost in a much larger system, with systemic erasure of the chronic issues repeatedly faced by deaf and deafblind people across the UK.

Good practice

There are a few examples of good practice, but these are inconsistent.

VRS interpretation services:

Some NHS Trusts, like Royal Devon and Greater Glasgow and Clyde, have a contracted VRS interpretation to ensure that deaf people can complain or give feedback.^{[footnote 117]}^{[footnote 118]} BSL users are given a number to call and an interpreter assists them to phone.

Healthwatch provides access to VRS.^{[footnote 119]}

In Scotland, BSL users can complain via Contact Scotland BSL VRS.^{[footnote 120]}

Virtual video booth:

The Welsh ambulance service collects patients’ online verbal feedback using video, a system that could potentially be used for BSL users, although this relies on videos being translated to English after submission.^{[footnote 121]}

Digital systems are unsuitable for AIS implementation

Digital recordkeeping platforms are not commissioned and designed with AIS best practices built in as default. As a result, software designers do not prioritise building accessibility into data systems. And 30% of NHS staff cited a lack of functionality in IT systems as a barrier to meeting the AIS.^{[footnote 122]}

Digitisation of services creates new barriers

Digitisation has the potential to improve healthcare access but there is widespread digital exclusion of BSL users caused by inaccessible systems.^{[footnote 123]} While there are benefits, there are new barriers. Some BSL users appreciate greater ability to manage their healthcare online without using the phone. But others struggle with completing online forms, particularly those who have poor English literacy or digital literacy, older people or those with low vision. Deafblind people particularly struggle to access digital systems.

E-consultations using telephone and digital platforms are often inaccessible due to a lack of support for BSL, inadequate captioning, and a lack of familiarity with how to use the technology among both the patients and staff. During the COVID-19 pandemic, 89% of GP e-consultations were not accessible.^{[footnote 124]} Platforms often do not allow a third party to join a call to provide BSL interpretation. If they do, poor functionality or poor wifi speed can mean it is not possible to see the interpreter clearly.^{[footnote 125]}^{[footnote 126]} Online forms often have no place for service users to state their access needs. Even when patients can state their needs, busy staff often overlook these and use the telephone anyway. Options with real-time responses are rarely provided, so deaf people usually have no way to reply to communication received from their healthcare provider. Texts and email messages are usually only one-way, so it is impossible for deaf users to let services know if they need to change or cancel an appointment unless they have access to VRS. Another issue is that NHS switchboards often will not allow telephone calls to be made via the patient’s preferred telephone relay service, so deaf people cannot accept incoming VRS or text relay calls from service providers.^{[footnote 127]} Inaccessibility creates financial waste and frustration, particularly if an interpreter has been booked. Understandably, time-pressed staff can be frustrated with patients who miss appointments, but patients often have no accessible means of contacting the service. All this makes existing access anxiety and avoidance worse.

Poor awareness of AIS among service providers and users

Many staff have poor awareness and may still consider pen and paper to be a reasonable adjustment for a BSL user, but this demonstrates a fundamental misunderstanding of communication needs. While one deaf person may prefer or be able to use written English, this cannot be assumed for others – communication support must be personalised. Many staff lack knowledge of BSL interpretation services and how to book interpreters. They may not be aware that, although registered qualified BSL interpreters must always be booked, unqualified trainees are often sent by the interpreting agencies. Staff do not always understand how variable interpreting quality can be and what the impact is on care when using interpreters who are not qualified. Staff and commissioners may not routinely insist that the interpreter is qualified and professionally registered, and not enough is done to inform BSL users of their right to accessible information.

Lack of mandatory staff training

Core skills training

There is a clear precedent with NHS England Oliver McGowan mandatory training on learning disability and autism.^{[footnote 128]}^{[footnote 129]} The training sets out standards for training on learning disability and autism for CQC-registered health and social care providers and their staff. It is a statutory requirement of the Health and Care Act 2022.

There is also a need for training about sensory disabilities, including deaf, deafblind and BSL awareness, but there is no requirement to provide this to health and social care workers.^{[footnote 130]} Such training must include how to book and work with qualified BSL interpreters, and communicate effectively with deaf and deafblind patients. Staff must understand why booking qualified interpreters matters. The use of unqualified or trainee interpreters can seriously undermine care quality and patient safety. Such training is not consistently offered across trusts and local authorities in England and Wales.

Professional training

Qualifying as a social worker, nurse, doctor or therapist does not require training in best practice for working with BSL users and interpreters or cultural competence.^{[footnote 131]}^{[footnote 132]}

Good practice

NHS staff in Scotland can access optional e-learning modules on BSL and tactile BSL awareness and better communications.^{[footnote 133]}

Researchers at Swansea University developed e-learning with the Deaf community using virtual reality, which improved staff empathy.^{[footnote 134]}^{[footnote 135]} This has been piloted with student nurses as part of their professional training.^{[footnote 136]}

University College London, Deafness Cognition and Language Research Centre provides online deaf awareness training for healthcare professionals and administrative staff, with tailored courses for specific healthcare disciplines (for example, doctors, nurses, audiologists).^{[footnote 137]}

Lack of standardised processes

AIS should be embedded in every service, with monitoring to ensure every staff member knows where to look up the planned procedure for BSL provision. Currently, BSL access is often reactive, an afterthought or seen as an optional add-on, with poorly defined processes or respect to patient-centred principles of care. An ad-hoc approach is unlikely to lead to improvements due to overstretched budgets and staff. Often AIS issues and complaints are considered too hard to deal with or deferred upwards in a chain of command where decisions get lost. This leads to unsafe care, miscommunication and repeat appointments. All this increases costs to the NHS through delays, wasted resources and avoidable harm. Investing in clear, accountable systems is not only a legal and ethical obligation, but also a cost-saving measure – one that reduces risk, waste, and long-term pressure on already overstretched services.

Shortage of qualified BSL-English interpreters

There is a UK-wide shortage of registered qualified interpreters and an urgent need to train more. For example, Wales has only 35 BSL-English interpreters. There are multiple registration bodies for BSL interpreters, which causes confusion and oversight in regulation. A rapid review found that deaf people frequently faced delays and inconsistencies in accessing qualified interpreters, potentially compromising patient safety.^{[footnote 138]} In some cases, clinical appointments were cancelled without efforts to find alternative solutions.

Following the death by suicide of Imogen Nunn, aged 25 years, the coroner raised concern in a prevention of future deaths report about the lack of availability of BSL interpreters for short notice and crisis appointments for urgent mental health needs.

The inquest was then adjourned for 2 months due to no interpreters being available for deaf witnesses.^{[footnote 139]} Imogen’s life did not need to end this way but her tragic story highlights how a lack of interpreters has an effect on mental health support for deaf young people, leaving some feeling like they have nowhere to turn.

Overreliance on interpreter agencies

The public sector often contracts large multinational spoken-language agencies to provide foreign spoken-language and BSL interpreting, which is just 2% of their market. They often have poor knowledge of issues affecting local BSL communities and interpreters, and poor awareness of the barriers faced by deaf and deafblind people in the UK. Contracting these types of agencies is a wasteful use of public money because without essential community knowledge and cultural and disability competencies they cannot match the needs of service users. This results in lower booking fulfilment rates and failure to provide a suitable interpreter when requested. This again results in delays and cancelled appointments.^{[footnote 140]} Agencies use the same pool of freelance interpreters, but apply large mark-ups on the interpreters’ fees, and do not contribute to growing the interpreter pool to meet increasing demand. Multi-language contracts usually fail to recognise the challenges of meeting the needs of a diverse BSL-using population in terms of specific needs, tailored language requirements and cultural understanding. Contracts are often assessed on fulfilment of bookings across multiple languages, meaning a supplier can meet their targets even if all BSL appointments are unfulfilled with no real incentive to find BSL interpreters.^{[footnote 141]} Contractual obligations do not include short notice bookings of less than 2 weeks. Specialist BSL agencies that understand the needs of BSL clients are sometimes sub-contracted by one of the big agencies but may be forced to operate on uneconomic margins.

Lack of shared information between services and agencies

The introduction of GDPR has created new barriers. Both services and interpreting agencies often do not share data that would improve accessibility and safety, despite allowances for this use of personal data within GDPR and AIS laws. For example, the individual’s name, sex or gender or the clinical setting of an individual requesting a BSL interpreter are not always released. Specific requirements are not passed on (for example, tactile BSL). There is no provision for sharing a mobile number or email address so the booking can be confirmed with the deaf person. Without sharing basic details (for example, name, type of appointment, relevant gender or sex, cultural or disability needs), interpreters cannot make informed decisions about whether they are appropriate for the booking. Likewise, deaf people cannot ensure their own needs, safety and dignity are respected.

This is problematic because interpreters cannot judge if they are suitable for the job or prepare. This creates risk for the BSL user, the service providers, and the interpreter. BSL interpreters should only take on a job if they can judge the ethical and practical viability of the assignment and can meet an individual’s stated needs (for example, a patient may request a deafblind specialist interpreter or a relay interpreter). They need to be able to prepare for terminology likely to come up in a specialist setting. The BSL community is small and interconnected, so interpreters accepting a booking must receive the person’s name so that they can judge if there is any conflict of interest or prior relationship.

Lack of choice

BSL users may have preferred interpreters for consistency of care, because the interpreters are familiar with the details of previous encounters with the service or can match their specific needs or local regional signs. Some may have concerns about confidentiality within the small BSL community, so having consistent and trusted interpreters is essential. Currently, BSL users cannot request specific interpreters or say which interpreters they do not wish to work with.

Lack of gender sensitive care

In some situations, it is important that the client can request their preferred sex or gender of an interpreter (for example, for intimate medical appointments or in the context of domestic abuse). Currently, agencies often do not tell the interpreter the potentially sensitive nature of the booking or the service user’s sex or gender. This means that deaf and deafblind people may be assigned interpreters of the opposite sex in situations where this is distressing or retraumatising. This is a clear breach of both dignity and personal autonomy. For example, a male interpreter may be allocated to a female service user for an appointment about gynaecological care or domestic abuse.^{[footnote 142]} It would be helpful if a deaf person could request an interpreter who shares or respects their protected characteristics when accessing services that may be specific to their identity.

In the proposed changes to the NHS Constitution for England, there is a commitment to allow patients to request that intimate care is provided by someone of the same biological sex, where reasonably possible.^{[footnote 143]} This is a recognition of the need for dignity, privacy and personal comfort in care settings. This principle must be extended to communication access – specifically to interpreters. For many deaf people, the interpreter is not a passive presence but an active participant in their care experience. The interpreter has access to personal and often deeply intimate information. If the interpreter’s presence makes a service user feel unsafe or disrespected, the care is compromised. Services and agencies must work together to ensure gender-sensitive allocation.

Lack of cultural, religious and sexual orientation-sensitive care

Service users may need to request or decline specific interpreting arrangements based on religious, cultural or sexual orientation-related factors. For example, deaf people can highlight a preference of interpreters from a specific group, for example, deaf LGBT or interpreters from ethnic minorities. A deaf person from a specific religious background may request an interpreter of the same faith or sex, particularly in faith-based or intimate settings (such as bereavement counselling) or culturally-specific services (such as a hospital chaplain providing support during palliative care).

Lack of interpreter booking confirmation

BSL users struggle to access information about whether an interpreter has been booked for an appointment. Healthcare staff often think that making a request is the same as a confirmed booking, when agencies may not fulfil these.^{[footnote 144]} Deaf service users do not usually receive booking confirmation or the name of the interpreter, to be assured they are qualified. The absence of a clear system for BSL users to make requests, view bookings and receive confirmations creates unnecessary stress, access labour and access anxiety. Often, they attend appointments without knowing if a BSL interpreter will be present. This ongoing uncertainty leads to appointment avoidance or relying on family and friends to interpret.

Lack of VRS BSL-interpreting services in England and Wales

Unlike in Scotland, in England and Wales there is no national VRS BSL-interpreting service for personal telephone calls, document translation or communication with public services. BSL users have no accessible way of making calls to manage appointments or access services and medical treatment in an emergency. VRS could be achieved through statutory funding as in Scotland, or with funds from private-service providers and telecoms companies as an alternative way to meet their regulatory requirements to provide reasonable adjustments to businesses and services. Many private-sector providers already pay for their own VRS services which could be pooled within a national service. For example, in the USA, VRS services are provided by a small surcharge on every phone bill. Similarly, a UK-based channel called Lumo TV is funded by mainstream channels as a way of meeting their accessibility obligations approved by OFCOM.

4.5 Systemic impact due to lack of interpreters and video relay service

The use of family and friends to interpret

The true extent of failures in AIS provision is that family and friends are expected to step into the gap – 56% of BSL users have had to rely on family, friends or their children to interpret.^{[footnote 145]}^{[footnote 146]} This happens because interpreters are not available or staff are not aware of the ethical issues, and because some BSL users prefer to ask a family member to translate because of a lack of trust in interpreter provision or quality or concerns about confidentiality in a small community. Healthcare staff must be aware that this is not good practice and registered BSL-qualified interpreters should always be provided.

The use of family and friends is unethical because:

they lack training and qualifications – the ability to use a language does not equate with the complex skills required to accurately and neutrally interpret between BSL and English
it creates risk in technical, legal or emotionally sensitive contexts – mistakes can lead to misdiagnosis or unsafe care^{[footnote 147]}
miscommunications may go unchallenged because of assumed trust between the parties, and NHS staff are unqualified to judge the accuracy of translation
BSL users have the right to privacy, autonomy and confidentiality, and to choose whether to disclose information to family and friends
there are risks of abuse of power, conflicts of interest and lack of impartiality – where family dynamics are strained, unsafe or coercive, relying on relatives to interpret creates a serious safeguarding risk
there is a risk of trauma from interpreting traumatic situations or news to loved ones
children are often asked to translate for parents^{[footnote 148]} – this has a negative impact on their wellbeing and their parents’ wellbeing^{[footnote 149]}^{[footnote 150]}

Lived experience

I had to suppress every emotion to be able to interpret and that affected me. Even though we knew dad was going to pass away, I don’t feel like I said goodbye to him.^{[footnote 151]}

(Hearing adult heritage signer)

Impact on heritage signers expected to interpret and advocate

Heritage signers may be hearing or deaf and have grown up with BSL-using parents as part of the Deaf community. They are also known as children of deaf adults – CODAs. They may be adept at using BSL, providing written or spoken translation, language brokering (where they influence the message and conversation) and literacy support for deaf family members.^{[footnote 152]} 97% of heritage signers undertake language brokering in healthcare settings.^{[footnote 153]} There are emotional, economic and practical burdens of the expectation on heritage signers to interpret or advocate for deaf or deafblind family members. These are made worse by the lack of AIS implementation. This pressure comes from the systemic failure to provide qualified interpreters and advocates. Heritage signers may be asked to translate by staff or family members, despite not being qualified to perform this role, and may find it difficult to refuse. Deaf heritage signers may have their own communication barriers that can lead to significant inaccuracies and misunderstandings. In many situations, including emergencies, there is often no alternative without VRS. Relatives, including young children, must step in and are encouraged to do so by staff.^{[footnote 154]}^{[footnote 155]} Most BSL users prefer not to rely on family members as they have a right to independence, privacy and confidentiality. And parents may worry about the psychological impact on their children – 15% of deaf BSL users report relying on a child heritage signer to interpret at a healthcare appointment.^{[footnote 156]}

Case studies: Service providers ask children to interpret

A deaf BSL user had an oncology appointment to find out test results. The clinic failed to book a BSL interpreter, so they asked his 14-year-old daughter to relay what the doctor said. She had to tell her dad that he had terminal cancer and passed out in shock, leaving the dad in a state, not knowing what was happening and deprived of his right to privacy and confidentiality.

A high level of professional interpreting skill is required to ensure the clinician can obtain informed consent before surgery. In this video example, a deaf mother describes how a medical team asked her hearing 7-year-old daughter to interpret for her and her deaf husband who had early-onset dementia and was having surgery. This very young child was used to obtain medical consent for the operation. His consent was not properly informed, which is negligent. The surgery went ahead, demonstrating unsafe practice. A registered and qualified BSL interpreter should have been booked, with the request tailored to his dementia.

My dad received a letter that he couldn’t understand so he asked me to translate it. It said that he was receiving end-of-life care. He didn’t even know that he was dying. I had to explain this to him. I was 12 years old.

(Adult child of a deaf adult)

A child was asked to interpret [when] their parents were being investigated for child abuse and neglect. This is still happening within child protection services.

(Social worker)

Question 7

5. Models of provision and commissioning

Accepted Answer

https://www.youtube.com/watch?v=60SNdlqwtYY

We identified 4 models of BSL provision:

provision of BSL interpreters (in person or VRS)
direct specialist BSL provision by service providers who use BSL
joint working between specialist BSL providers and local services
Deaf or BSL community-led provision

5.1 Provision of BSL interpreter (in person or video relay service)

Currently, the main model involves providing BSL interpreters either in person or via video call. This allows practitioners to communicate with BSL users within mainstream services. There is an assumption by commissioners that local services working with an interpreter is the best and most cost-effective solution to accessibility, but this is not always the case. This model works well for many health settings such as GP and physical health appointments, or settings where diagnosis is mainly based on objective clinical findings. It works less well for settings where direct communication in the same language is essential for accurate assessment and diagnosis – such as mental health, neurology and psychology – as meaning and cultural nuance often get lost in translation. In social care, statutory assessments also require extended and culturally nuanced interpretation.

Face-to-face interpretation

Having an interpreter present in the room is the preferred option for most BSL users for appointments, ward rounds or meetings where the time is known in advance. Also, in-person interpretation is essential for face-to-face procedures. The BSL interpreter often provides wrap-around support, assisting with communicating at the reception desk and alerting the deaf person to their name being called in the waiting room, information which cannot easily be provided virtually.

Remote video call interpretation

VRS is used for phone or video conversations between a deaf person and a hearing service provider in separate locations, while video remote interpreting (VRI) allows for face-to-face communication between a deaf and hearing person in the same location, with a remote interpreter facilitating the interaction via video call. Some hospitals provide an ‘interpreter on wheels’, essentially on a mobile screen mounted on a trolley which is wheeled into the clinic or ward. Video interpreting is the only option for emergencies or walk-in services when there is no face-to-face interpreter available. It can provide a useful backup option if the face-to-face interpreter is delayed, or for very short appointments like blood tests. VRS is rarely available in social work services or social care provision. It provides vital support for managing appointments, phoning the GP or social services and getting letters and documents translated. One-third of BSL users reported positive experiences accessing healthcare using VRS for phone and video calls but less satisfaction when it was used for face-to-face appointments.^{[footnote 157]}

Video interpreting is not an option for serious or complex situations such as statutory social work investigations or proceedings, or when a service user is in pain, having surgery, giving birth or when medical complications arise. Poor wifi connections, equipment failures and lack of staff familiarity mean that VRS may not always provide reliable access, with the service freezing or dropping mid-call. 41% of BSL users reported negative experiences within health settings with VRS, which increased stress.^{[footnote 158]} There are practical considerations related to whether the patient or provider has the device or data connection. Video interpreting is not suitable for many deafblind people, although those with partial vision may find it accessible. It is also unsuitable for BSL users with other needs or those who are uncomfortable using technology – for example, some older signers. Some remote VRS interpreters are unfamiliar with local or regional signs.

There is concern within BSL communities that VRS is seen as the cheaper, more efficient go-to option for agencies and service providers, even for situations where it is unsuitable and does not provide full access. It is important that BSL users can specify a choice that meets their needs and that there are guidelines about when VRS interpreting should not be used. When VRS is offered, it must not be framed as a cost-saving substitute, but one option among many, to be selected in consultation with the deaf individual. Anything less undermines autonomy, access rights and quality of care.

The effectiveness of interpretation models (face-to-face, VRS and VRI) depends on the following factors:

high-quality interpretation (registered qualified interpreters)
good awareness among service providers about how to book and work with interpreters, and the specific cultural and information needs of BSL users, including those who are deafblind
knowledgeable community-based agencies that are committed to providing a high-quality BSL interpreting service
service users being able to navigate services, and having reasonable health literacy and good BSL language skills – if this is not the case, they may need additional advocacy and intralingual language modification
good wifi and screen quality for video calls

If any of these factors are missing, booking an interpreter for generic healthcare services provides some access but will not give true access or full understanding, with risks to the quality of medical care the person receives. Providing an interpreter only removes superficial barriers. Even with all these factors in place, meaning can get lost in translation and using interpreters may be less clinically effective for some settings, such as mental health, than specialist services delivered directly in BSL.^{[footnote 159]} Commissioners typically assume that providing interpreters is the only solution for access issues, without considering the benefits of direct provision in BSL.^{[footnote 160]}

Good practice

Contact Scotland BSL: Provides VRS so callers can contact public, third and private-sector services across Scotland.

Milton Keynes University Hospital: Provides VRS for emergency department and out-of-hours care and face-to-face interpreters for daytime appointments.^{[footnote 161]}

BSL Health Access: SignHealth provided a VRS and VRI service in England during the pandemic, called BSL Health Access. This was effective in reducing costs associated with health inequalities. It took 30,000 calls in one year with a team of 30 interpreters. More than 60% of calls were for GP appointments, showing that deaf patients relied on the service for essential primary care. Early access to preventative care is significantly more cost-effective than treating advanced conditions, highlighting the financial prudence of maintaining VRS access within the NHS.^{[footnote 162]} NHS England provided operational funding for 4 months and commissioned a rapid review of commissioning procedures for BSL-interpreting services to improve quality and consistency. It agreed to the recommendation for a new VRS service in England, but this remains unimplemented due to lack of government funding.^{[footnote 163]}

5.2 Direct BSL provision by service providers who use BSL

Direct BSL provision is when expert practitioners communicate directly in BSL without the need for interpreters, enabling accurate communication, cultural understanding and affirmative care for deaf and deafblind people. There is a national shortage of direct BSL service delivery and it is only available in limited contexts, mainly in England – for example, specialist BSL mental health provision, a limited monthly national outpatient clinic for cognitive disorders and dementia in London, a sexual health clinic in London, and a few remaining specialist sensory, social-services teams with BSL-fluent social workers.^{[footnote 164]}

Direct BSL provision is critical for fulfilling statutory duties in child and adult safeguarding, care assessments and mental health support.^{[footnote 165]} These duties encompass the most significant powers under civil legislation affecting the rights, freedoms and entitlements of adults and children. For example, investigation of neglect and abuse, assessment of capacity, eligibility for support in the community and enforced confinement for treatment. In cases where a person being assessed is deaf, direct communication from the assessor holding such powers, duties and responsibilities is preferable and, in many cases, essential.^{[footnote 166]}

Direct BSL provision is also essential for areas relating to the brain, mind or language, where effective communication between a clinician and patient, and the use of BSL tests and clinical tools, are vital for early and reliable diagnosis and planning effective treatment.^{[footnote 167]}

Without BSL pathways, people with mental health or neurological conditions are assessed via an interpreter and often not referred on, misdiagnosed, or diagnosed late or not at all.^{[footnote 168]}^{[footnote 169]} This is because GPs and clinicians need to be experienced in what normal deaf cognition, language and behaviours look like to reliably refer and diagnose conditions – it is not enough to just provide an interpreter and hope for the best. Specialist BSL services are top priority for equitable and safe healthcare, with delivery by healthcare workers who are fluent in BSL, with expertise in their field.

Services urgently needing specialist direct BSL provision	Availability of direct BSL provision across the UK
- mental health and counselling	- limited in Scotland, lacking in Wales
- neurology, memory clinic, dementia and other neurodegenerative conditions	- limited UK-wide clinic – one new outpatient per month
- brain injury services	- no specialist BSL provision
- speech and language therapy	- no specialist BSL-language therapy provision. Limited and inconsistent child pathways. No adult BSL-specialist pathways
- neurodevelopmental conditions including autism, ADHD, learning disability, dyslexia, dyspraxia and language disorders	- some provision for children within Child and Adolescent Mental Health Services in England. No adult BSL pathways within the NHS

Telemedicine and health promotion

Greater use of telemedicine has the potential to provide direct BSL provision to a dispersed population.^{[footnote 170]} It has proven effective for BSL counselling, and could also support health education, stopping smoking, weight management clinics, patient and carer groups, and antenatal or parenting classes.^{[footnote 171]} These could be run remotely and directly in BSL, bringing together BSL users from across a large geographical area to receive a bespoke service. Such services promote health literacy and behavioural change, giving the tools for self-managing health conditions. Group or individual sessions directly in BSL, tailored to Deaf cultural norms and avoiding assumed health knowledge, will be more effective and cheaper than sessions via a BSL interpreter. This could have a greater health impact, as BSL users often opt out of attending groups even when interpreters are provided, because the style of information delivery does not meet their needs or give them opportunities to learn from deaf peers. A remote BSL model for health promotion services could mirror a police-affiliated online speed-awareness course for deaf drivers, which was run remotely to multiple groups across a wide area using direct BSL or BSL interpretation.

Efficacy and cost-effectiveness of direct BSL provision

Research shows that direct BSL provision embeds cultural competency and establishes trust. The result is fewer missed appointments, reduced waiting times, greater cost-effectiveness and better healthcare outcomes.^{[footnote 172]} For example, SignHealth’s talking therapies in BSL outperform national averages for recovery and improvement rates and are currently ranked 7 out of 159 IAPT talking therapy services in England.^{[footnote 173]}^{[footnote 174]} There was also a reduction in interpreter-related delays through direct BSL provision of a domestic abuse service.^{[footnote 175]} Direct BSL services remove the need for interpreters in standard appointments, reduce costs and waiting times due to limited availability and high demand for interpreters. This is important because direct provision is usually the least preferred option for commissioners on the grounds of cost.

5.3 Joint working between specialist BSL providers and local services

Within this model, local teams keep clinical responsibility, but BSL specialist practitioners provide support, expertise and joint working. For example, English deaf specialist mental health services work in this way with community adult mental health teams. In Bristol, a locally-commissioned specialist deaf mental health service works jointly with the local dementia and autism services to provide a joint assessment pathway and adapted assessment materials.

Potentially, ‘hub-and-spoke’ models (a central service that connects to individual localised care) could work well at national or regional levels for BSL healthcare. For example, a national brain injury service could work directly with deaf patients or support them via outreach work with inpatient or local neurorehabilitation teams. Similarly, a national BSL diabetes management service could provide vital self-management education in BSL to patients seen by local teams.

There are issues related to this model: specialists end up spending valuable clinical time dealing with knowledge gaps among staff generally (including a lack of deaf awareness), AIS obligations or improving local access. This is an inefficient use of their valuable clinical expertise. Broader staff teams must receive basic training on fulfilling the AIS obligations separate from such services.

5.4 BSL communities as a resource to provide services and interpreter agencies

A solution for some settings is direct BSL service provision that is led, designed, managed and run by qualified practitioners from the Deaf community itself. BSL users understand their own needs so are best placed to create services that will truly work for the Deaf community. Including deaf expertise would use the skills of people who are culturally competent, are fluent in BSL, have specialist deaf and deafblind-related historical knowledge, and have access to other resources which are unavailable outside of our communities. It is an obvious win for health and social care services, the Deaf community, and the public.

Service provision from contracted interpreter agencies should also be led by BSL users and interpreters, or our allies and those with direct experience of working closely with the Deaf community. Service-level contracts must require spoken language agencies to demonstrate meaningful engagement with BSL users and create regular feedback mechanisms. Service-user experience should be a core component of monitoring and evaluation to ensure that poor-quality provision no longer goes unchallenged.

This community-based approach builds upon existing skills and knowledge, increases trust, creates involvement, provides full access, and offers tailored services for BSL users and the Deaf community. This adheres to the principles of the latest government vision for innovation and focuses on solutions and outcomes that integrated care boards in England are mandated to follow to serve local areas. A community-led approach provides employment opportunities, reduces social isolation, and increases engagement with BSL service provision – all creating cost-efficient solutions for accessible services. Such an approach empowers and strengthens BSL-users and expert practitioners to play an active role in delivering the health and social care services that affect their lives.

Underuse of deaf and BSL expertise

Expertise within the BSL Deaf community is currently underused. Qualified and experienced practitioners with lived experience and cultural competency are unable to provide services to their own community because of a lack of commissioned direct BSL health services. Although social care has a long history of directly commissioning Deaf communities to provide non-statutory social care services, this has shrunk in the last 20 years. Instead, deaf professionals spend their careers delivering services to hearing people via BSL interpreters. The expertise of deaf and hearing BSL users should not be wasted. BSL services should be delivered by qualified BSL professionals as the most affirmative and cost-effective approach. This needs to be given much greater consideration by commissioners.

‘Postcode lottery’ of services

Examples of effective BSL provision (both direct and via interpreters) are too often dependent on individual efforts, rather than on established, organisation-wide systems. Initiatives are isolated and reliant on the leadership, energy and goodwill of individual BSL practitioners who innovate locally to improve access to services, often overcoming significant institutional barriers to do so. Such initiatives are often unsustainable and dependent on wider systemic factors – staff morale, staff turnover and engagement. This makes provision vulnerable to single-point-of-failure issues, as reliance on a few staff leads to services or access collapsing when that person leaves or is away. Often, the Deaf and Deafblind communities are not aware of what BSL provision is available. It is limited and not consistently commissioned, creating a postcode lottery. Without commissioned structures, embedded services, pathways, and clear procedures, these initiatives tend to fade away when the relevant staff or leaders move on, so any progress is precarious.

Lack of support for staff development

There are relatively few deaf people qualified to work in health, mental health or social care professional roles, with even fewer in Scotland and Wales. Employing deaf and deafblind staff is critical to enabling systemic culture change and accessibility improvements, and the delivery of specialist direct BSL services.^{[footnote 176]} Too often, deaf and deafblind people’s careers do not progress because of the lack of development opportunities and specialist posts.^{[footnote 177]} Training and development pathways are underdeveloped, particularly in leadership roles. The removal of systemic barriers to career progression is essential, with training required for line managers on implementing reasonable adjustments, and government commitment to reduce the high administrative burden and barriers caused by inefficiencies with the AtW and DSA schemes. Deaf professionals need better access to mentoring, coaching, counselling and peer-to-peer schemes. Entry criteria and job specifications do not always consider the access barriers that BSL users have faced in education or balance these with vital BSL-related skills.

Commissioning

We have identified the following issues with commissioning services for BSL users.

Assumptions about cost-effectiveness

There needs to be more consideration of long-term outcomes and the cost of escalation from not meeting needs when commissioning services.

For some areas of provision, specialist BSL provision will be more cost-effective than ineffective local service delivery via BSL interpreters (for example, mental health, neurology, specialist social work).

Solutions which employ expertise from within the BSL community to deliver direct services are routinely overlooked.

BSL users currently lack a choice about whether they receive services locally with a BSL interpreter or direct BSL specialist input designed for deaf people from a service provider who can use BSL. Commissioning should allow this choice.

Funding and budgeting challenges mean that deaf and deafblind people’s needs are deprioritised.

Knowledge

Commissioners do not always understand the need to ensure that services are linguistically accessible, culturally affirmative and responsive to the needs of BSL users.^{[footnote 178]}

There is a lack of training for commissioners on the service needs of BSL users. They are not familiar with Deaf culture and do not have a full understanding of people’s preferences or of how valued specialist deaf services are to the BSL community.

Commissioners do not always recognise that commissioning deaf services may not be the same as commissioning other services. For example, BSL provision requires a different model and contract, so off-the-shelf contracts designed for other populations may be unsuitable.

The inaccessibility of complaint procedures means BSL users face significant barriers in raising concerns. As a result, commissioners may wrongly assume that a lack of complaints indicates satisfaction, when in fact it reflects a system that is excluding feedback entirely. This creates a dangerous feedback loop where poor service provision goes unchallenged.

Geographical issues

Geographical bias is evident in the way that services are structured, set up and commissioned, which do not serve the needs of dispersed communities like the Deaf and Deafblind communities.

Existing commissioning structures and systems focus on local populations, prohibiting service development across national, regional or local authority and healthcare trust boundaries. The result is that BSL users with low population density are underserved.

Each integrated care system (ICS) is responsible for setting local priorities through consultation.^{[footnote 179]} But when these are inaccessible – for example, there is no BSL interpretation or visual information – BSL users are excluded from shaping decisions. As a result, ICS priorities often overlook or deprioritise BSL community needs, further entrenching health inequalities.

In higher-density areas, such as major cities, commissioners are not working with healthcare trusts or local authorities to create services such as a BSL-specialist GP practice or BSL-nursing care and residential homes.

Failure to address fragmented care for BSL users, where UK nations and different services do not communicate well with each other, leads to gaps and inconsistent care.

The use of technology to provide direct services in BSL across larger regions is usually not explored by commissioners.

Inclusive service design

There is widespread failure to embed AIS standards into commissioned services, digital solutions and platforms. This includes failure to ensure services provide BSL accessible information and websites, and that the physical environment is accessible for deaf and deafblind BSL users. For example, the use of telehealth and digital platforms may inadvertently exclude BSL users through greater reliance on English literacy or by not providing the digital infrastructure for BSL interpretation or automatic captions.

Many BSL users require advocacy and service navigation support to ensure needs are met, but commissioners may not see this as part of their statutory duty.

The transformative importance of commissioning national VRS interpreting services to help BSL users manage appointments, navigate services and translate documents is not currently understood.

Representation

BSL users have limited representation in the commissioning process. There is a lack of research about what services are needed, how best to deliver them or what model of delivery is most cost-effective and has the best outcomes.

There is a lack of representation of BSL users among commissioning staff, and a lack of partnerships with Deaf-led organisations to ensure services are tailored to the needs of the community. There should be greater opportunity for BSL leadership in the commissioning of BSL services.

Multinational spoken language agencies have not added social value or benefit to the BSL community. The Procurement Act 2023 places new emphasis on social value and community benefit, providing an opportunity to reform how interpreting and language services are commissioned, with a greater focus on BSL community providers who build community cohesion and opportunities for BSL community development.

5.5 Commissioning, tenders, contracts and service-level agreements for BSL interpreting services

A major systemic barrier is that the current NHS national tender framework only requires a 92% fulfilment rate for BSL interpreter requests, and individual NHS trusts can set their own level, with insufficient contract monitoring. A BBC See Hear investigation identified a postcode lottery in England.^{[footnote 180]} Of the 145 trusts that replied to a Freedom of Information request by a deaf journalist, the worst performing trust fulfilled only 23.5% of interpreter requests, while the best achieved 100% fulfilment. 90 trusts had a VRS contract and 43 did not. Most service-level agreements stipulate 2 weeks’ notice for booking interpreters, which is inadequate for accessing short-term appointments and urgent care.^{[footnote 181]}

Contracts vary but few have comprehensive monitoring requirements for:

interpreter quality
urgent provision
fulfilment rates
meeting specific user needs
social value

Most contracts do not specify the following.

Interpreter quality:

whether a fully qualified and registered interpreter was provided
appropriate levels of experience, for example, highly specialised mental health interpreting

Urgent provision:

how they will provide interpreters for inpatient care, emergency services, urgent care and walk-in appointments

Fulfilment rates:

fulfilment rates of 98% and above
fulfilment at different service levels such as emergency, short notice and appointments that are over a week’s notice

Meeting specific user needs:

how often a confirmation of interpreter booking was sent to the service user
whether an in-person or remote interpreter was requested (by staff or the BSL user) and how often this was achieved
recording when a BSL user has requested a specific gender or sex of communication professional and how often this is achieved
recording a BSL user’s preferred pool of BSL interpreters and how often these preferences are fulfilled
recording specific requests for additional communication needs and how often these are fulfilled (for example, Deafblind interpretation, intralingual relay)

Social value:

through contracting BSL community-based agencies, services and organisations

In the past, agencies had better access to the Deaf community. The added social value of contracting community-aligned providers includes supporting BSL centres, which provide other services and a social hub for the Deaf community. Contracting services run by experts in the needs of BSL users has the advantage of bringing additional growth to the Deaf and wider community, rather than increasing profit for private shareholder companies that are not meeting needs well enough.

Greater AIS fulfilment and fewer missed appointments save the taxpayer money. This approach provides increased employment, encourages community cohesion and creates a healthier, more resilient BSL community – with improved uptake of services reducing social isolation and loneliness. This holistic approach to the problem of poor access of BSL users to health and social care maximises social value for the Deaf community, allowing it to develop, prosper and thrive.

Service-level agreements

After contracts are awarded, service-level agreements (SLAs) govern the day-to-day delivery and accountability of interpreting services. SLAs translate contractual obligations into practical, enforceable standards. Current SLAs are not co-produced with deaf experts or standardised across providers. They are not culturally and linguistically aligned to BSL interpretation or deaf lived experience and are often not fit for purpose, inclusive or enforceable.

Good practice

A community-based co-operative agency is providing contracted interpreting services in the Liverpool area. It is community-aligned, drawing upon and strengthening ties between the local Deaf and BSL interpreter communities. This allows for synchronicity between the needs of the Deaf community and the provision of tailored healthcare interpreting, including emergency provision, with a 100% booking fulfilment rate. Healthcare trusts share essential information so that the agency can match preferences for a particular interpreter’s sex or gender, and to meet specific communication requirements. The agency is contracted to provide in-person interpreting with 24/7 VRS provided for emergency or walk-in situations, booking appointments and navigating services by phone, or as a backup if an interpreter is delayed on the way to an appointment. If a deaf patient is admitted to hospital, an interpreter is sent every day. NHS staff make 95% of bookings but 5% come directly from deaf patients who can request an interpreter via a web portal or by sending a scan of their NHS appointment letter. Service users can also fill out a profile with their preferences and needs, including deafblind and relay interpreters. A text message is sent to the deaf person to confirm every booking with the interpreter’s name and profile.

Interpreter booking failures and clear policy

NHS policies place clear responsibilities on healthcare providers to rebook cancelled clinical appointments within specific timeframes. But there is no equivalent policy or accountability when interpreter bookings fail, even though the impact on patient care can be just as significant. Deaf patients are often left to carry the burden of system failures, finding out too late that communication support will not be provided.

Use of technology for greater service user control

Service users need control over the booking process and must be able to confirm when an interpreter is booked.

Better use of technology would make the booking process more transparent and user-centred – allowing greater peace of mind, attendance and efficiency, while reducing missed appointments, miscommunication and financial waste. Currently, users are left out of the booking process with no choice, control or ability to state their communication needs and preferences. They cannot begin bookings in cases where trusts or local authorities have not booked them.

The NHS already uses apps for managing appointments. Additional functionality for requesting interpreter bookings should be added. There are several apps in development designed to meet the BSL communities’ needs, including one commissioned by the Scottish Government.^{[footnote 182]}^{[footnote 183]} These apps give the user confirmation of the interpreter booking. Cost savings can come from better use of technology, which improves the efficiency of the booking process, saves staff time and reduces cancellations and missed appointments. With these approaches, staff receive notification that a deaf person has requested an interpreter and can confirm and manage the booking. This provides the essential two-way control over the booking process, allowing BSL users to ensure that agencies and communication professionals are aware of their exact needs and communication requirements, and informing the service and agency at the same time if they are unable to attend. The service provider often forgets to cancel the interpreter booking, which results in financial waste. Such apps could also allow users to send complaints or feedback in BSL.

Lived experience

Today I arrived at the appointment and there is no interpreter. When I arrived the staff spoke to me and I didn’t understand what they said. I could not lip-read 100% of what they were saying. They looked on the computer and said no interpreter had been booked again. I was fuming. They gave me a new date for an appointment in 2 weeks.

The receptionist wrote on a piece of paper for me, ‘We will rearrange’. I looked at her, I said, ‘You book an interpreter, now’. They said ‘OK’ and got on the phone while I stayed at the desk. They said, ‘I have phoned for an interpreter; I will let you know.’ I said, ‘No, now.’ The receptionist said they would text me later. I arrived home still angry and received a text to confirm the appointment for 2 weeks. We cannot see how the system works. We don’t know. It could be the fault of the interpreter; it could be the hospital or doctor’s surgery may have an agency they have contracted for interpreters. They talk to one another, but we don’t know the details, we don’t know the system. Hearing people could get an appointment tomorrow, we can’t. Deaf people’s lives are more at risk. I know a lot of deaf people suffer, but what action is being taken? It’s frustrating, we need to meet with the hospital, with the interpreting agency or the team, to discuss what’s going on and how to resolve this, but nothing. They have their own separate groups, same old story, for years, ‘close ranks’.

We know there are deaf people all over the UK who are suffering in silence. The system is poor, also in the hospitals. They say they will book an interpreter and they book on the computer. I want something like a tick box or button to click that says they must book an interpreter. Something they can never miss. Because they miss it, again and again. Lots of deaf people out there have missed appointments, they don’t turn up. [It’s] discrimination, thinking we will accept it and keep quiet.

(Deaf BSL user)

Question 8

6. Limited access to the healthcare system

Accepted Answer

https://www.youtube.com/watch?v=unHnQkoXH9o

In this chapter, we describe how the lack of direct BSL provision and BSL communication and awareness is undermining the quality of the healthcare received by BSL users at every level of the NHS. Current practice may not be safe and effective, or treat people with dignity, compassion and respect. Deaf and deafblind people are excluded from the social contract between the NHS and the public, with consequences for equitable health outcomes. The Patient Safety Commissioner identified a safety gap due to the inaccessibility of medicines and medical devices.^{[footnote 184]} There is a widespread lack of awareness, leading to miscommunication, misdiagnosis and failures, with very few staff receiving deaf or BSL awareness professional training.^{[footnote 185]}

6.1 Access to the NHS front door

Primary care – GPs

BSL users struggle to access both physical NHS services and its ‘digital front door’.^{[footnote 186]}^{[footnote 187]}^{[footnote 188]}^{[footnote 189]} The digital front door relates to the NHS’s digital channels, such as the NHS App and website and the login service. Deaf people access GP services less frequently and much later in the progression of a health problem than the general population. The result is that when services are accessed, treatment and interventions may be more complex or less successful.^{[footnote 190]} Deaf and deafblind people are locked out from making appointments by phone booking systems which require hearing, and some are locked out from digital systems which require good written English literacy and vision (NHS App, e-triage forms and e-booking systems). Many say they have no choice but to walk to their GP surgery to make an appointment face-to-face, with no BSL interpreter present.

Once an appointment is made, GPs typically attempt to contact deaf patients via phone or video for e-consultations. They can’t hear calls, end up missing their appointment and have no way to contact the GP surgery as email or text numbers are not provided. Most of the platforms used for remote video consultations do not allow an interpreter or third-party to translate conversations, so these appointments are also missed because they are inaccessible. Face-to-face consultations may be missed, delayed or ineffective if an interpreter is not provided. BSL users report that clinicians often lack awareness of their needs, do not look away from their computer screen to communicate and do not allow extra time for the consultation. Deafblind people often do not have access to communicator guides (a professional who assists with deafblind communication, environmental awareness and helps people get to an appointment) or to BSL interpreters with specialist skills in communicating with deafblind people. These frustrations mean that many deaf and deafblind people avoid or delay accessing medical care or miss appointments. They are often discharged if they do not answer the phone or reply to messages.

NHS 111 and 999 BSL

The NHS 111 in England, the 999 BSL video relay service (VRS) in England and Wales, and Contact Scotland BSL in Scotland, provide instant interpreting provision via video call.^{[footnote 191]}^{[footnote 192]}^{[footnote 193]} They are examples of good BSL access for emergencies or urgent advice. However, this VRS BSL provision is limited to calling the emergency services or getting 111 advice. The BSL user is then left without VRS or BSL interpretation to access emergency care for the services that are recommended to them. They cannot communicate easily to arrange appointments, talk to their pharmacist or attend A&E. The 999 BSL video relay service is only available until the emergency services arrive, then the VRS call is ended. There is no extra BSL provision to communicate with emergency services after their arrival. BSL users cannot communicate with first responders and it is impossible for a paramedic or police officer to fully assess the situation, to ask questions or give reassurance. Facemasks also make communication impossible and stressful. VRI video relay provision must be available so that BSL users can communicate with ambulance, police and fire brigade services. This gap poses a significant risk to health and life, where clear, accurate communication is crucial. By implementing both VRS and VRI in tandem, a continuous communication pathway would be provided. This reduces risk for BSL users and frontline professionals through safer, more effective communication at every stage.

Lived experience: Inconsistent video relay service provision causes wastage

Thanks to NHS 111 VRS, I’ve been able to contact 111 via a BSL-interpreted video call but I get into the same loop as 111 always refers to the local urgent care service, who cannot call me back because there is no general NHS VRS service! I’ve even been in a stupid four-person relay chain because of this issue and they ended up sending 6 paramedics here at the same time!

(Deaf BSL user)

First responders – ambulance and paramedic teams^{[footnote 194]}^{[footnote 195]}

First responders lack training and awareness in communicating with deaf and deafblind BSL users, leading to delays in addressing the medical emergency. Individuals and other BSL users at the scene or in the household may not be able to communicate effectively with emergency service providers, which can delay treatment and complicate diagnosis. For example, they might struggle to explain symptoms, medical history or allergies, which may delay or have a critical effect on treatment. Frontline professionals may not recognise that animated behaviour in a signer may result from their language modality and does not necessarily indicate a crisis or a risk to themselves or others.^{[footnote 196]}

Paramedic staff often lack the awareness to accurately assess a deaf or deafblind patient’s consciousness, ability to communicate or cognitive state. Important signs of stroke or brain injury and other medical symptoms may be missed. Simple things like knowing how to gain a patient’s attention by tapping their arm or using BSL to ask basic questions are crucial. As a result, deaf and deafblind patients and their family members often have more traumatic emergency care experiences because of poor communication, which can have lasting effects on mental health.

Case study

A deaf lady aged 25 years was hit by a car, lost consciousness and was awake but confused by the time the ambulance arrived. The paramedics and hospital staff could not communicate to assess her mental confusion and no BSL interpreter was requested. Because her cognitive symptoms went unidentified, she was discharged without a brain scan when she had sustained a brain injury caused by ongoing swelling and bleeding. The missed diagnosis meant that she did not receive any follow-up from community neurorehabilitation services, had to give up work, and continues to struggle with coping and low mood. She requires mental health intervention, benefits and ongoing care services. With better BSL communication and quick medical intervention, this costly support may not have been needed and her life would not have been shattered.

Pharmacy first

Community pharmacies across the UK offer a convenient way to access healthcare for 7 common conditions. This allows patients to get certain prescription medications and COVID-19 vaccinations directly, without a GP appointment, freeing up GP time and avoiding treatment delays.^{[footnote 197]} This has created new barriers for BSL users accessing NHS treatments because pharmacists cannot communicate with deaf or deafblind people and interpreters cannot be provided for drop-in appointments. There is no VRS or VRI provision for this service, which would help resolve some of the barriers.

Lived experience

If they write anything down, I don’t understand and can’t ask for clarifications as I don’t understand the English. Sometimes they just hand me medication. I want them to make recommendations so I can make an informed choice, but I can’t ask questions or discuss my concerns or talk about medicines or contra-indications. I know some medicines cannot be taken together as it could be dangerous! The solution is simple – provide a VRS app that I can use to communicate with NHS services including Pharmacy First. That would be life changing.^{[footnote 198]}

(Deaf BSL user)

Primary and outpatient care

Intercoms and waiting rooms

Deaf and deafblind people experience high levels of stress trying to access NHS buildings and when sitting in the waiting room, with appointments missed or delayed because they have not heard their name called.^{[footnote 199]} Two-thirds of deaf people report barriers while in the waiting room.^{[footnote 200]} They are literally locked out of the NHS estate by intercoms which require hearing to gain access. Most NHS waiting rooms lack visual displays or vibrating buzzers that alert deaf and deafblind people to appointments. Healthwatch research showed that deaf people often have to rely on others to attend their appointments, which compromises their autonomy.^{[footnote 201]}

Reception desks

Front of house staff and receptionists play a pivotal role in the accessibility of the NHS and the way a patient feels welcomed. But staff are not given awareness training on how to:

communicate effectively with deaf and deafblind people
book interpreters
communicate with BSL users at the reception
use text, email or video calls instead of phone calls

Good practice

Greater Glasgow and Clyde NHS Trust has provided a poster with a QR code at reception desks to enable deaf people to use VRS to communicate with the receptionist.^{[footnote 202]}

Inpatient hospital care

Deaf and deafblind patients in hospital are locked out of decisions about their care. They may also experience higher levels of pain because they are unable to communicate with medical staff and interpreters are often not available for ward rounds.^{[footnote 203]}^{[footnote 204]} They often have longer hospital stays because of the lack of suitable follow-on care in the community that meets their BSL needs. There is no nationally-recognised system or symbol for showing that a person occupying a bed is a deaf BSL user.

Video relay service interpreting on wheel-in trolleys

Hospitals and clinics need to provide an ‘interpreter on wheels’. This is when a tablet is mounted on a trolley, which is wheeled into the appointment, and a remote interpreter facilitates the interaction via video call. This can be a solution for unscheduled medical communication on a hospital ward or clinic but is not consistently available across the UK. There are many situations where patients cannot access VRS because they are lying flat in bed, have visual or cognitive difficulties, are in pain, giving birth or during procedures where it is impractical. Face-to-face interpreting should be provided as needed in hospital settings, which is important for deafblind patients who may not be totally deaf or totally blind but have significant difficulties.^{[footnote 205]} Daily BSL face-to-face interpretation should be provided for ward rounds and scheduled procedures. In some cases, an interpreter should be on standby all day. It is also important that interpreters should not be asked to perform nursing duties such as feeding deaf patients. This often happens.

Staff are often uncertain about how to wake a deaf person and are reluctant to touch them to get their attention. Deaf patients can miss drinks or meals as they do not hear the refreshment trolley. Some have difficulty reading the language on menus to choose food.

Good practice: Posters and QR codes

The Royal Devon and Exeter Hospital makes innovative use of posters with QR codes, which are placed around the hospital or above a deaf patient’s bed. BSL users can point at these posters to request that a BSL interpreter be booked for an appointment or use the QR code to immediately access VRS. The posters have clear instructions for staff to explain how to book and use VRS. This reduces anxiety for both sides.

Planned procedures and surgery

BSL interpreters must be booked for the whole duration of procedures, otherwise processes will be disrupted if the interpreter needs to leave early. This increases the risk of poor care, breach of informed consent or expensive surgery cancellations.

It is vital to provide in-person, qualified interpreters to obtain informed consent and to assist with clear communication about pre-and post-surgery instructions. This needs specialist interpretation skills to ensure informed consent.^{[footnote 206]} Even with BSL interpretation, some deaf people may struggle to understand what they are agreeing to and may require a health advocate or intralingual relay to ensure that consent is fully informed. Healthcare staff need more opportunities for training on gaining consent from BSL users.

Case study

A deaf woman with a diabetes-related problem with her leg was booked for surgery but during the consent process the interpreter had to leave for another booking. The nurse tried to explain to the patient that she would have her leg amputated but the patient just nodded along and did not really understand, unknowingly agreeing to the procedure. The patient woke up in the recovery room, shocked that her leg had been removed.

Early diagnostic and screening services

Anecdotally, there are many examples of delayed and missed diagnoses in BSL users caused by lower uptake, missed appointments or lack of interpreter provision for diagnosis and screening. BSL users are more likely to avoid bowel, cervical and breast screening because of communication issues and lack of access to health literacy information about why it is important.^{[footnote 207]}^{[footnote 208]}

Community services

Services are delivered in people’s homes, care homes, community hospitals, clinics and schools, but there may be poor wifi for VRS, so in-person interpreting support is essential. Often interpreters are not provided for short or last-minute home visits, which means vulnerable people are left without communication, including those receiving district nursing or palliative care. VRS interpretation should be available as a backup for these situations but only when an in-person interpreter is unavailable. VRS is particularly well-suited to short routine clinic appointments such as vaccination, blood donation and blood tests.

Dentistry

Research shows that deaf people are at greater risk for developing oral health problems and bruxism (teeth grinding) due to higher stress levels.^{[footnote 209]} There is an association of dental problems with common causes of deafness such as prematurity and rubella.^{[footnote 210]} BSL users have poorer communication with their dentist.^{[footnote 211]} NHS dentists should provide interpreters but lack guidance on how to book one.^{[footnote 212]} Private dentists often do not realise their obligations to provide interpreters under equality legislation. So, deaf people typically have to manage with inadequate communication. Many avoid going to the dentist, go less frequently and have unmet dental needs. This leads to poor oral health, which has negative effects on systemic general health.^{[footnote 213]}^{[footnote 214]}

Adult audiology

Audiology services have the highest numbers of deaf service users within the NHS. But, ironically, most services are not fully accessible to deaf people or BSL users, who often use cochlear implants or hearing aids.^{[footnote 215]} Research has highlighted systemic problems in service delivery and a hearing-centric rather than deaf-centric approach.^{[footnote 216]}^{[footnote 217]}^{[footnote 218]} Staff routinely call the names of deaf patients in waiting rooms, which lack visual displays. The arrangement of waiting room chairs often makes it difficult to see staff calling names or communicate visually. Administrative staff use telephone calls to communicate with deaf people about appointments, often discharging those who cannot return their calls. Deaf BSL users are even more likely to experience barriers, with most not requesting interpreters because they hope that audiology clinics will be deaf aware. When interpreters are requested, these are often not provided. Audiologists report that they cannot use many of their assessment tools with BSL users, as existing measures are unsuitable because they require spoken language responses. This indicates that BSL users are not receiving the same standard of audiological clinical care as other deaf patients and the general population. There is poor recognition among audiology staff of BSL as a language, of BSL users as a cultural-linguistic group, and poor understanding of their audiological needs.^{[footnote 219]} Very few audiologists have basic BSL skills.

Good practice

A new Deaf cultural-competence framework is being piloted at a Manchester hearing aid clinic, which includes:^{[footnote 220]}

implementation of a deaf-centric waiting room (visual calling system, seating and deaf friendly communication)
BSL resources for BSL awareness and audiology-related signs
new guidance co-created with local deaf user groups
cost-benefits analysis of improved accessibility

Vision services (ophthalmology, optometry, opticians)^{[footnote 221]}

Best practice guidelines are needed for vision assessments for deaf and deafblind BSL users.^{[footnote 222]}^{[footnote 223]}^{[footnote 224]} BSL users, both those with normal vision and vision loss, find vision assessments particularly challenging. There is a lack of patient-centred care, and poor awareness of their communication needs and of how deafness and low vision senses compensate for each other. Patients often find vision appointments highly stressful. Examples include clinicians failing to provide clear instructions about procedures before starting tests or allowing enough time for BSL interpretation of instructions. Deaf people cannot look in 2 places at once. They also do not ensure that all instructions are given before eyedrops are administered that distort vision or before lights are turned off. Clinicians may not realise that once vision is compromised by these practices, BSL communication and lipreading are also affected so they must adjust their consultations accordingly. There is also widespread failure to tap or gesture to show deaf patients which way to look during eye examinations, or to adapt to the tactile needs of deafblind patients by touching their face to indicate which way to look.^{[footnote 225]} Specialist interpreters for communicating with deafblind people are often not provided even when requested. Deaf and deafblind patients are rarely given priority on waiting lists or for surgery despite their reliance on vision for communication, environmental awareness and safety.

Lived experiences

They refused to put lights on. I could not see to understand them in the dim light. The nurse just pulled me about. I couldn’t find the chair. I sat on a box of medical equipment and then ended up on the floor. I didn’t know what to do during the tests. It was so humiliating that I cried.

(Deafblind person, translated from BSL)

A simple thing like gently touching my face to show the direction you want me to look during an eye examination makes a huge difference to me. It makes me feel calmer and respected as a tactile person.

(Deafblind person, translated from tactile ‘hands-on’ BSL)

When I was just a deaf person I needed the ophthalmologist to point and gesture during eye tests but now my very narrow tunnel vision means I cannot see their hands. A simple thing like gently touching my face to show the direction you want me to look during an eye examination makes a huge difference. It makes me feel calmer and respected as a person who needs touch.

(Deafblind person, translated from BSL)

Long-term health conditions

Deaf people living with long-term health conditions face significant barriers around communication, access to information and emotional support.^{[footnote 226]} Poor communication can lead to misunderstanding, misdiagnosis, late diagnosis, inadequate treatment and less support to learn about, manage and live well with their condition. Interpreters may not be provided or may lack specialist knowledge and BSL vocabulary. Clinicians may overlook opportunities to use BSL or visual resources, diagrams or demonstrations to help patients to understand complex management information. Digital health apps do not include visual prompts to make it easier to track a condition. Medical tracking devices often lack visual or tactile alerts. Dealing with chronic conditions can be emotionally challenging for everyone, but it is especially hard without access to support groups or clear communication with healthcare providers. BSL users can feel isolated, worsening anxiety and depression, which may further affect their health in a downward spiral.

There is a lack of individual and group emotional and psychological support tailored to the needs of BSL users with chronic health conditions – both in the NHS and the charity sector – with few dedicated BSL peer support groups and no individual therapy. Online communities which provide peer support and shared experiences are not accessible to BSL users, making their isolation worse. BSL users face long waits for counselling with those who can sign BSL. These counsellors often lack expertise in health psychology and knowledge of how long-term conditions affect deaf or deafblind people.

Cancer

Diagnostic procedures, treatment plans and medical information are complex. When interpreters are available, they typically lack training on specialist cancer-related vocabulary and knowledge in a constantly-evolving field. BSL signs do not evolve fast enough to keep up with the latest treatment innovations. There are few visual materials or BSL resources explaining medical procedures, treatment options and cancer terminology. There is a lack of psychological or emotional cancer support in BSL, with long waits for general BSL counselling when patients may be terminally ill and not have the time to wait. The sex or gender of the BSL interpreter is often sensitive in cancer care (breast, prostate, testicular cancers).^{[footnote 227]}

Good practice

The MacMillan Cancer Support model is widely praised within the Deaf community, with charity funding for a self-help UK Deaf Cancer Support project for people living with cancer and their carers.^{[footnote 228]}^{[footnote 229]} Cancer awareness is provided to the Deaf community through trained deaf volunteers, tailored BSL videos and plain English resources. BSL advocacy support is available for navigating the hospital and benefits systems, and in understanding complex cancer treatment regimes. There is no equivalent support within the NHS.

Diabetes

Diabetes treatment often involves people managing their own, complicated treatment regimens. Deaf BSL users lack access to BSL and visual NHS information explaining complex medical jargon related to blood sugar levels, insulin management or complications like diabetic retinopathy (eye disease of the retina).^{[footnote 230]}^{[footnote 231]}^{[footnote 232]}^{[footnote 233]} Sign language translations of medical terms may not exist or be universally understood, leading to confusion or incorrect self-management. Patients may not have access to clear, culturally-appropriate visual learning materials, such as BSL tutorials on how to monitor blood sugar levels, manage diet, or understand test results and device instruction manuals.^{[footnote 234]}

Cardiac conditions

BSL users with heart conditions need to understand terms that have no direct translation in sign language (‘arrhythmia’, ‘atherosclerosis’ or ‘myocardial infarction’) which can create confusion. Heart conditions have symptoms that may be subtle or hard to detect early. BSL users lack the information needed to:

understand warning signs
know when to seek medical help
follow complex heart medication regimes
monitor their own blood pressure
understand side effects
make dietary changes

Lack of accessible instructions increases the risk of patients not sticking to their treatment plans, which can lead to adverse outcomes. BSL users lack access to group cardiac rehabilitation programmes and psychological support, negatively affecting their mental health and ability to cope.

Case studies

A woman in her 50s was diagnosed with bowel cancer, but treatment was delayed for nearly 2 to 3 months due to a lack of BSL interpreters. During this time, her cancer progressed from stage 2 to stage 3. She finally had BSL interpreters and treatment was promptly carried out, but it resulted in having a permanent stoma (a surgical opening in the colon to help with toileting). If it had been treated at stage 2, there wouldn’t have been a need for a stoma.

A man aged 63 years came for his cancer consultation (newly diagnosed). He promptly walked out of the consultation because a BSL interpreter was not provided. The hospital scrambled to book a BSL interpreter for this man within 3 to 4 weeks. He returned after much persuasion, resumed his consultation and started treatment (after a substantial delay).

A deaf woman aged 49 years became deafblind after losing much of her sight to diabetic retinopathy (eye disease of the retina). She had not understood the importance of good insulin management because BSL interpreters were not provided for her appointments.

Maternity care

Deaf and deafblind parents face barriers across NHS maternity services. There is poor communication and awareness of their needs during ante-, peri- and post-natal healthcare. They also face difficulties accessing support for postnatal depression, increasing the risk of families needing the social care system.^{[footnote 235]}^{[footnote 236]}^{[footnote 237]} Complex obstetric (pregnancy and birth) outcomes such as preterm birth, low birthweight and caesarean delivery are more likely in deaf women.^{[footnote 238]}^{[footnote 239]} Others may find themselves on high-risk pathways simply because of communication barriers.^{[footnote 240]} There are no records of the number of BSL users accessing services, and no accessibility protocols or checklists to ensure BSL access at every stage of the NHS maternity journey, such as consistent access to BSL interpreters and BSL resources. Interpreters are often not booked at important times such as antenatal scans, hospital discharge, midwife or health visitor appointments. Mothers are not receiving detailed and accessible information about their pregnancies, which risks the health of women and babies.^{[footnote 241]} Staff lack knowledge and confidence, so mandatory training is essential, together with good practice guidance.^{[footnote 242]}^{[footnote 243]} VRS interpretation is completely unsuitable for women in labour who need in-person interpretation. BSL communication professionals are not birthing partners or caregivers. During the COVID-19 pandemic, fathers were excluded from scans or births as interpreters were wrongly seen as carers. Guidance should recommend that haptic signals (using touch to convey meaning) are agreed within the birth plan. This would ensure that deaf and deafblind women can receive reassurance and instructions, as intense stages of labour may make visual communication difficult.^{[footnote 244]} Deaf partners must have interpreters even when the pregnant partner is hearing.^{[footnote 245]}^{[footnote 246]}^{[footnote 247]}

Antenatal education groups are not geared towards BSL access or a deaf learning style. New and expectant parents often bear the burden of ensuring accessibility. Arranging a pool of interpreters to cover the period when a baby is due is tricky due to unpredictable variables. There is often much ‘access labour’ involved in setting this up. Deaf women are often forced to advocate for their needs but then have requests ignored.^{[footnote 248]} There is not enough accessible BSL information for procedures like newborn screening and after-birth injections. Staff assumptions about deaf and deafblind people’s ability to parent can be harmful and there is a lack of knowledge about assistive devices such as vibrating or flashing baby alarms. Better joined-up care with social services is required to ensure that a lack of assistive devices does not delay discharge from hospital. There is an impact of isolation caused by a lack of access to maternity and early years services for new parents and their children – including mental health and educational outcomes – but this has not been properly researched. There are no specialist BSL pathways for deaf mothers with postnatal depression, and no records of the numbers of women affected. They often have lengthy waits for general BSL talking therapies, which do not provide specialist postnatal mental health support.

Newborn screening for deafness often takes place in maternity wards. Staff need to avoid making assumptions such as using negative language or offering condolences if tests suggest that a baby of deaf parents may also be deaf. Many deaf parents feel neutral or positive about having a deaf child and report that negative reactions from staff have affected their experience of getting to know their newborn.

6.2 Underdiagnosis (overshadowing) in BSL users

The term ‘overshadowing’ describes the underdiagnosis of physical or mental health conditions in people who clinicians struggle to communicate with. Assessment of deaf and deafblind people is challenging for clinicians even when working with BSL interpreters. Overshadowing and missed diagnoses of mental health and brain conditions are common because clinicians are unfamiliar with what ‘normal’ or ‘impaired’ cognition or behaviour typically look like in a deaf or deafblind person. This means that mental disorders, cognitive disorders and neurodivergence may go unrecognised.^{[footnote 249]} Clinicians who are not familiar with healthy deaf and deafblind people, and who do not share a language with their client or have cultural competence, will struggle to identify abnormalities and behaviour or language idiosyncrasies. Symptoms are missed altogether or misattributed to deafness, language or cultural differences. Working with interpreters does not solve this problem. Communication is a primary clinical tool and clinicians usually rely extensively on verbal and nonverbal cues during the clinical interview. A person’s description of their symptoms reveals a lot about their mental health and cognition. These clues are lost when using an interpreter.

The interpreter may inadvertently assist or edit answers by scaffolding responses or providing choices and examples to help the deaf person to understand.

Interpreters may find meaning in unclear or disordered BSL expression and make it sound more coherent in their spoken translation. Because of this, significant mental and neurological dysfunction may be overlooked because translation masks aspects of a deaf person’s communication. As BSL uses space, movement, facial expressions and handshape to convey grammatical meaning, interpreters are not just translating between languages, but also between the visual and auditory modalities. This can create unrecognised disadvantages or advantages that distort the assessment of a person’s mental state or cognitive abilities.^{[footnote 250]} Deaf people must be assessed by BSL specialist clinicians, with assessment and history-taking conducted in BSL. Mental health questionnaires and cognitive tests should be developed directly in BSL or standardised assessments that have been correctly translated and validated for use – this includes establishing clinical ranges for this population.

The following factors make it difficult for clinicians without specialist experience to conduct accurate mental state, cognitive and language assessments for deaf and deafblind people:^{[footnote 251]}

heterogeneity (difference) in typical early development of deaf people, shaped by whether they had access to fluent language as infants, degree and age of onset of hearing loss, use of auditory aids, and extent of communication and language deprivation and language, particularly where families or educators did not use sign language or lacked fluency^{[footnote 252]}
neuroplastic effects (how your brain adapts) of early deafness^{[footnote 253]}
use of a signed rather than a spoken language has subtle influences on cognition and perception, meaning that normative performance may differ for some cognitive tasks^{[footnote 254]}
clinicians need to be alert to possible causes of prelingual (before speaking) deafness that may also cause neurological or language disorder, including infections and syndromes
cultural and linguistic differences pose further difficulties in using cognitive tests and questionnaires designed for hearing people^{[footnote 255]} – verbal and memory tests lack validity when used with deaf people^{[footnote 256]}
sign language fluency is required to understand the intersectional nature of neurological disability and deafness, and how brain injury or a mental health disorder intersects with a visuospatial language like BSL – hallmark features such as voice hallucinations or thought disorder may manifest differently in sign language users, and certain neurological impairments will be more disabling for a deaf person reliant on visual language and affect their communication and behaviour differently from hearing people (for example, visuospatial and face processing impairments or impacts on limb movement planning and articulation will create communication difficulties for a deaf BSL user that would not occur in hearing people)^{[footnote 257]}
reference to deaf test norms is essential but these are often not available – understanding the modifications required for test administration and interpretation requires specialist clinical knowledge

Specialist deaf mental health services

Mental health services for BSL users are relatively well developed in England but are limited in Scotland and completely lacking in Wales. There are significant geographic disparities, with some areas of excellence at the community level. In all 3 nations, mental health assessments are commonly completed by non-specialists who often cannot communicate directly with a deaf or deafblind person, resulting in delays and misdiagnoses.

In England, specialist mental health services have developed in a disjointed way, often in response to serious incident enquiries. There is no dedicated policy lead within NHS England. There are major service gaps such as:

transition services from child to adult provision – gaps for young people aged 18 to 25 years, with a current pilot for a new service in Yorkshire
secure forensic services for deaf women
community forensic services and prison inreach (healthcare services in prison), or BSL programmes preventing reoffending after release
early intervention, crisis teams or psychiatric intensive care units
prevention services and resources are absent, meaning that BSL-users deteriorate significantly before they get help
BSL VRS crisis helplines – are currently all phone-based
addictions and eating disorders teams
older adult and learning disability provision
trauma specialist skills or trauma-informed provision
pathways and assessment tools for deaf people with language deprivation
lack of suitable community care for BSL users cause longer inpatient stays

Other barriers include the following.^{[footnote 258]}

Difficulty getting referred to specialist BSL mental health services because of poor communication with GPs and local community mental health team assessments are required first. Deaf patients cannot be referred directly or self-refer. Non-specialist services act as gatekeepers but have poor awareness of the need for specialist services or how to refer to them. They are not familiar with deaf or deafblind needs or what mental disorders look like in signers.

Evaluations carried out by non-specialists, often without BSL interpreters, frequently result in missed or incorrect diagnoses. This can lead to patients being incorrectly detained, placed in unsuitable settings and not receiving appropriate treatment. Deaf patients often endure long periods of unsuitable hospital admissions and care.

A lot of clinical time is spent reassessing incorrect diagnoses made by mainstream services.

Delays are created because BSL users must first be assessed by hearing services, despite the existence of specialist services intended to fill the gap in accurate assessment and support for deaf people.

Some people with needs greater than primary care services can offer, but not severe enough for specialist services, fall into a gap in care when they cannot receive the help they need until their mental health deteriorates

So ironically, referrals to higher-tier support occur at a later stage, after symptoms have escalated due to not receiving the support needed earlier.^{[footnote 259]}

Poor transitioning between child and adult services. Local mainstream mental health teams must accept the referral for the individual before specialist adult services get involved. This causes delays where there are urgent mental health needs.^{[footnote 260]}

Few mental health resources, therapy protocols or self-help tools are available in BSL.

Specialist skills are needed to detect language deprivation, voice hallucinations and thought disorder, and provide tailored therapeutic interventions.^{[footnote 261]}

There is a lack of standardised mental health questionnaires appropriate for deaf and deafblind populations, and translations have not been made available in BSL or investigated for their reliability and validity. Standardised BSL outcome measures for talking therapies are now used within the NHS and clinical cut-off scores are lower than for the general population. This underlines the importance of research and development of BSL assessment tools.^{[footnote 262]}^{[footnote 263]}

Brain conditions

Neurological services have a long-term staff and skills shortage across the NHS, which deepens the marginalisation of deaf people. Specialist services and expertise for diagnosing and supporting BSL users with brain conditions are essential. Deaf people do not have equitable access to specialist health services like memory clinics and neurodevelopmental services. Even when interpreters are provided, services are poorly equipped to meet the diagnostic and support needs of BSL users. The lack of specialist services is costly, as unmet needs and people living their entire lives with overlooked brain disorders cause a drain on public resources. Cost-benefit analyses demonstrate how providing specialist services for deaf patients with neurological disorders can cost less than general provision with interpreters, with savings accruing from more effective diagnosis and management. In 2010, the estimated savings for one BSL user over 5 years were £145,700.^{[footnote 264]}

Lived experiences

The problem was that the clinicians could not communicate directly with her or see beyond her deafness, so they struggled to understand the meaning of mum’s difficulties. Many were unable to see past their negative assumptions of what it meant to be a deaf person, including assuming low intelligence or that her cognitive and reading difficulties were simply caused by her deafness. Consequently, mum was given inaccurate diagnoses and ineffective treatment. I often had to challenge the use of assessments that were inappropriate for a deaf person, or a non-English speaker, or where the norms being judged against were those of hearing populations, which may or may not have had any relevance to my mother’s results. In comparison, this team were fully deaf aware. Not just at a surface level, but in understanding what it meant to be a functional, articulate deaf person who uses BSL. For the first time in her life, mum was assessed as a whole person, not simply as someone who was deaf.

After 25 years of visiting doctor after doctor, and a multitude of diagnoses, we finally received a neurological diagnosis that provided the missing piece of the jigsaw. Suddenly things made perfect sense. My mum had a brain injury, and her experience and symptoms could be explained. It was a huge relief for us both and transformed our experience of the last years of her life. My mother’s story is just the tip of an iceberg of hidden impairments in deaf people.

(Hearing son of deaf BSL user)

Neurodevelopmental conditions

Autism and ADHD

There is a rapidly-increasing demand for adult ADHD and autism assessments in the general population, but no specialist NHS or private pathways for deaf BSL users.

As a result, deaf people with undiagnosed neurodivergent conditions are overrepresented in specialist mental health services, especially those receiving expensive inpatient treatment or who do not respond to therapeutic treatments. In Bristol, deaf adults can get a diagnosis through mainstream services but there are challenges in scaling this up to other regions due to a lack of commissioning, trained professionals fluent in BSL and limited awareness of deaf-specific neurodivergent needs. There are adapted assessment tools for deaf children with autism but no clinical norms for deaf adults or BSL questionnaires for ADHD.^{[footnote 265]}^{[footnote 266]}^{[footnote 267]} These conditions present differently in deaf people, so clinicians must have specialist knowledge to separate the developmental and social communication aspects of deafness from atypicality or neurodivergence.^{[footnote 268]}^{[footnote 269]} There is currently little material available in BSL or specialised coaching and therapy. This makes it extremely difficult for deaf people to fully understand and manage their condition.

Deaf children

Children with ADHD or autism are often diagnosed by deaf CAMHS services in England. However, there is no specialist neurodevelopmental pathway for other brain disorders in children, including brain injury and epilepsy, which are more common in deaf children, who often have syndromes, experience birth trauma or prematurity.

Learning disability

Deaf people of normal intelligence are often mislabelled and end up in learning disability services unnecessarily. Others miss out on services because their learning disability is overlooked. Community learning disability teams are available in most areas but there are no specialist learning disability teams for deaf people who use BSL.

Specific learning disabilities

Research and diagnostic protocols for specific learning disabilities such as dyslexia, dyspraxia and dyscalculia are particularly lacking for deaf BSL users. This means these conditions are rarely assessed or identified in deaf people although they have a lifelong impact.

Neonatal brain injuries

Deafness co-occurring with cognitive and other brain difficulties is increasing as neonatal care improves, with more babies surviving birth traumas.^{[footnote 270]}

Neurodevelopmental conditions

Neurodevelopmental conditions are often detected late or not at all in deaf children. This is because all their difficulties are assumed to be related to deafness. As a result, there is currently a bottleneck of adults seeking a diagnosis because of historically poor rates of childhood diagnosis and a lack of services. Early identification is crucial for determining the reasonable adjustments that allow BSL users to succeed in education, employment and remain economically active.

Stroke, brain injury, brain diseases, epilepsy, neurodegeneration and dementia

There is only one UK-wide specialist neurology clinic for deaf dementia patients providing diagnostic assessments in BSL at the National Hospital for Neurology and Neurosurgery in London. The clinic sees one new patient per month. There is a long waiting list and no psychology input after a diagnosis.^{[footnote 271]}^{[footnote 272]} There is no specialist service for brain injury, stroke, epilepsy or rehabilitation. When seen in standard clinics, deaf patients and families often report a poor experience and a lack of trust that they will receive an accurate assessment.^{[footnote 273]} There are no guidelines for neuropsychological assessments of signers.^{[footnote 274]} Specialist BSL neurology services are essential because expertise is required to recognise if signers show cognitive difficulties, aphasias (when people can no longer use or understand signs) and apraxias (when people cannot plan their own hand movements). Also, those with dementia may revert to older forms of BSL.

Unmet need

The estimated number of adult deaf BSL users living with a neurological condition was approximately 8,000 in 2010. This includes 400 signers who have had strokes, and 500 to 700 signers with Alzheimer’s. There are high levels of undiagnosed neurological conditions in the Deaf community.^{[footnote 275]} Poor communication with clinical staff and a lack of appropriate assessment tools mean that conditions are often identified later – when difficulties become obvious – or not at all. This has adverse consequences for care planning and medication. There is great difficulty accessing follow-up support, with risk of spiralling needs.^{[footnote 276]}^{[footnote 277]}

BSL assessment tools

The use of BSL assessment tools is essential, but there are inadequate, unvalidated and inappropriate translations of tests designed for English speakers, often administered using interpreters without appropriate specialist training. Some standardised communication, mood and cognitive tests have been developed and normed with deaf signers but further research and development are required.^{[footnote 278]}^{[footnote 279]}^{[footnote 280]}^{[footnote 281]}^{[footnote 282]}

Stroke

Sign language is processed in the left hemisphere of the brain, like spoken language. As a result, a left-hemisphere stroke affects sign language production and comprehension in ways comparable to its effects on spoken language. This is also the case following right-hemisphere strokes.^{[footnote 283]} Particular symptoms of strokes, such as limb apraxia (difficulty in planning movement) or paralysis, make it difficult for BSL users to communicate. Similarly, visual difficulties that may follow a stroke make understanding challenging.^{[footnote 284]} There is a lack of equality in terms of service provision. A study that measured referral for stroke services found that BSL users were around 5 times less likely to be referred to a speech and language therapist than the rest of the population. They also face difficulties in accessing physiotherapy and occupational therapy due to poor awareness and language barriers.^{[footnote 285]} The Stroke Association has produced BSL videos and provides VRS but there is no dedicated NHS BSL provision.^{[footnote 286]}

Dementia

Dementia among BSL users is rapidly increasing, but there is a shortage of specialist diagnostic services and follow-on care. There is also a poor awareness of dementia in the Deaf community.^{[footnote 287]}^{[footnote 288]} Delayed diagnosis in BSL users causes unequal access to medical treatments designed to slow decline.^{[footnote 289]}^{[footnote 290]} Families struggle to get the emotional and practical support they need and there are no BSL and dementia specialist options for residential or home cares, and almost no in-home support.^{[footnote 291]}^{[footnote 292]}^{[footnote 293]} There is social care guidance in Wales but not in the rest of the UK.^{[footnote 294]}

6.3. Older adults and end-of-life care

Like the general population, the BSL community is ageing. By 2035, there will be between 11,500 and 26,689 BSL users aged over 65, and between 2,500 and 5,800 aged over 85.^{[footnote 295]} There is no NHS plan to meet the needs of older deaf and deafblind people. Loneliness and frailty are growing problems in BSL users, with greater levels of isolation and digital exclusion than younger people. Deaf and deafblind people are particularly affected as they age because their social networks are dispersed rather than local. Once they find it difficult to travel, they become increasingly isolated. There are few BSL-accessible day care centres or social clubs. There are no BSL specialist older adult community mental health teams, unlike the widespread local provision for hearing older people. Failures to provide BSL home care and residential placements within the social care system mean that unplanned hospital admissions are frequent in the last year of life.

End-of-life and palliative care

There is no specialist BSL provision for users needing palliative and end-of-life care. There is no NHS and social care strategy which allows deaf people to die with dignity and compassion, with communication preference for BSL respected, and with face-to-face interpreters provided if they are too unwell to use a VRS screen. Mapping care journeys for BSL users is vital to enable better collaboration between the health and social care systems. The Deaf community do not know the options available and there is confusion about how hospices differ from hospitals. Interpreters lack the experience and terminology to make this clear in translations. BSL users are often reluctant to transfer to care settings where they cannot communicate, preferring to stay at home. However, this increases emergency hospital admissions for basic care support. Hospice care is not a peaceful option for deaf and deafblind people if they cannot communicate with anyone.

Lived experience

Right now, the experiences of deaf people … are shocking. I have met patients who have been referred to palliative care services who have not understood that they will no longer be receiving cancer treatment. They haven’t understood that they are dying.^{[footnote 296]}

(Palliative care doctor)

Assisted dying

The Assisted Dying Bill is a proposed law that would make assisted dying legal in England and Wales, giving people with terminal illness control over how they die. Important considerations for BSL users in the context of this law relate to:

ensuring clear communication
understanding the process
informed consent
establishing capacity
access to appropriate support

This includes offering BSL counselling, to check that the desire to die is not because of a lack of accessible BSL care and marginalisation due to barriers to living well as a deaf or deafblind person – something at a crisis point so creates a serious risk for people.^{[footnote 297]} Medics making decisions need training to become aware of their own internalised ableism, unconscious bias and ignorance about how deaf and deafblind people can lead fulfilling lives, and how they can absorb negative societal narratives about deafness and deafblindness, which may shape their thinking about wanting to die.

6.4 Deafness diagnosis and early years

Universal newborn hearing screening within the NHS since 2006 has led to earlier identification and intervention for deaf babies (1 in 1,000, with another 1 in 1,000 identified as deaf by age 5 years). Most deaf children are born into hearing families (95%).^{[footnote 298]} Yet early intervention and family support to promote language development is inconsistent across the UK. This support needs to involve the NHS, local authorities and the Department of Education (DfE).

There is a notable disparity in how languages are treated in deaf early years services and education. English is introduced from the earliest stages, while BSL, despite being recognised under the BSL Act 2022 and the UNESCO Salamanca Statement, is not consistently offered as part of early language provision for deaf children and families.^{[footnote 299]} The UK has a predominantly ‘speech first’ approach to deaf children but when this is unsuccessful the child will miss having accessible language input during a critical period for language development (0 to 5 years). This can result in language delays. Researchers in the USA report that around 70% of the American deaf population experienced early years language deprivation.^{[footnote 300]} This is a clear example of health and social inequality because for hearing children language deprivation is only seen in those who are severely neglected. Some people say that early use of BSL results in poorer use of English, but neuroscience research strongly demonstrates this is not the case.^{[footnote 301]}^{[footnote 302]}^{[footnote 303]} Evidence shows there is no need for an either/or approach, as there are clear linguistic and cognitive benefits to bilingualism.^{[footnote 304]} This extends to sign language and applies to children with cochlear implants.^{[footnote 305]}^{[footnote 306]}

Most families do not have contact with deaf adult role models to support their understanding of Deaf culture and experiences. Their deaf child is usually the first prelingually deaf person they have met, and the medical model of deafness is the first perspective that they encounter. For this reason, early conversations in healthcare settings are critical for healthy adjustment and framing of deafness. Encouraging positive identity development in deaf children is crucial for their mental wellbeing in adulthood.^{[footnote 307]}

6.5 Terminology used by professionals and services

The National Institute for Health and Care Excellence (NICE) has new guidelines for best practice in trauma-informed care.^{[footnote 308]} This is needed because the terminology in a diagnosis of suspected deafness or deafblindness, often shortly after birth or part of neonatal screening, profoundly influences family grief, adjustment and acceptance of a condition. It is important for a parent and child’s healthy sense of self as a deaf or deafblind person, instead of viewing them as deficient, impaired or broken. What is said at this stage can have lifelong consequences for family relationships.

Often the terminology used to talk about deafness by medical and allied professionals focuses on loss and impairment (‘hearing impairment’, ‘hearing loss’, ‘partially hearing or sighted’, ‘hard of hearing’). Being deaf or deafblind is instantly presented as a negative thing, a deficit or impediment relative to the state of having full hearing or sight – implying a lesser state instead of being ‘complete’.

Lived experience

The bottom fell out of my world, my beautiful baby was labelled as broken.

(Parent of a deaf child)

The terms ‘deaf’ or ‘partially deaf’ are more helpful and less ableist.^{[footnote 309]} Children born deaf have a sensory difference and different needs. Medics and professionals working with deaf children and their families should use more affirmative language. The British Association of Teachers for the Deaf is calling for affirmative terminology to be used across public services, health and education to provide more healthy psychological outcomes for deaf children and families.^{[footnote 310]}

NHS information shared at diagnosis

There is no specific NICE guidance regarding the information provided to families during neonatal screening, identification and diagnosis. BSL and its potential to support communication and the development of language from birth is often left out of early conversations in health settings. Families are still discouraged by audiologists and early years professionals from learning or using BSL with their deaf child, even though it is the natural language of deaf adults. Research evidence also shows the benefits of early exposure for language acquisition and speech development, cognitive development and learning to read well.^{[footnote 311]}^{[footnote 312]}^{[footnote 313]}^{[footnote 314]}^{[footnote 315]}^{[footnote 316]}^{[footnote 317]}

Lived experience

I couldn’t really understand why (BSL) was discouraged; it didn’t make any sense.

(Hearing parent)

Clear information about BSL and informed choice

The government promotes the principles of “informed choice” (giving access to options and evidence-based healthcare information). There is clear evidence that

introducing BSL in early childhood is beneficial, but early intervention services often prioritise speech and hearing technologies without giving families balanced, evidence-based information. For a choice to be genuinely informed, families must receive comprehensive, unbiased information about both spoken and signed language pathways, presented with the same emphasis. Clear information about BSL from audiologists is essential and should be reinforced by early intervention professionals who are assigned to families to support language development.

Multimodal language development is essential

Language development and language processing are multimodal in the brain. BSL uses the same brain regions as speech.^{[footnote 318]}^{[footnote 319]}^{[footnote 320]}^{[footnote 321]} Families should be informed that there is no scientific evidence that the use of BSL hinders spoken language or auditory processing. There is no trade-off between visual and auditory processing in the brain. Instead, there is growing evidence from neuroscience that shows that multimodal and visual communication are essential to achieving the best possible language outcomes for deaf children after cochlear implantation.^{[footnote 322]} Supporting hearing parents to use sign language before and after cochlear implantation improves a child’s spoken language outcomes.^{[footnote 323]}^{[footnote 324]} The best speech outcomes after implantation are achieved by native signing children of deaf parents who outperform those from hearing families whose parents do not sign.^{[footnote 325]} Evidence shows that deaf children in hearing families benefit from early short-term use of sign language and even more so if sign language use is continued. There are notable cognitive benefits too, with improvements to phonological memory (ability to recall spoken words) seen in those who continued to sign after implantation.^{[footnote 326]}

Some auditory-verbal training (AVT) approaches discourage children from watching speech movements, apparently to help develop their listening skills. This goes against what we know from neuroscience about multimodal input being effective for hearing and deaf children.^{[footnote 327]} Visual information plays a crucial role in deaf communication and sign language, and visual speechreading should never be prevented.

Human rights

Deaf adults who were discouraged from using visual communication or sign language as children often report experiencing trauma and harm. We think that such approaches are a contravention of the human rights of deaf children to engage in meaningful communication (Article 19, Universal Declaration of Human Rights).^{[footnote 328]} The World Federation of the Deaf affirms this through advocacy on the Declaration on the Rights of the Child, which emphasises the importance of advancing the rights and inclusion of deaf children through access to education, equality and full participation in society. Denying or limiting access to sign language undermines these rights and restricts a child’s ability to develop language, identity and equal opportunities from an early age.^{[footnote 329]}

Prevention of language deprivation

Learning BSL in the early years of life is critical to preventing language deprivation. If deaf children do not receive accessible language exposure in these crucial years, they may never develop fluent language skills. This has a detrimental impact on the development of their:

cognitive skills including theory of mind (understanding others’ intentions and emotions)
working memory (holding and process information to do things)
executive function (how we plan, problem solve and carry out tasks flexibly to achieve goals)^{[footnote 330]}^{[footnote 331]}^{[footnote 332]}^{[footnote 333]}^{[footnote 334]}^{[footnote 335]}^{[footnote 336]}^{[footnote 337]}^{[footnote 338]}

Language deprivation affects other developmental outcomes, such as school readiness, literacy, academic performance, employment, emotional health, physical health, peer relationships, family relationships and identity.^{[footnote 339]} It has serious lifelong consequences for emotional development and mental health. Deaf children who have problems communicating with their families are 4 times more likely to have mental health issues.^{[footnote 340]} Those with language deprivation are at risk of developing challenging behaviours, mental illness, unemployment, dependence on the state and extensive use of health and social care services. For some deaf people their language deprivation is so severe that some researchers consider it a unique mental health disorder (‘language deprivation syndrome’).^{[footnote 341]}^{[footnote 342]} Deaf patients with severe language deprivation are overrepresented on specialist deaf and forensic wards.

While language deprivation is usually framed as systemic or unintentional failure, a related concept is linguistic neglect, which adds a stronger sense of accountability. This means that professionals or systems were aware of a deaf child’s need for accessible communication and failed or chose not to act.^{[footnote 343]}

Historically, the reluctance of professionals and lack of funding to recommend that families learn BSL, and the prevention of sign language in deaf education, have led to generations of deaf people living with language deprivation and linguistic neglect. This could have been prevented if parents and educators were able to sign and use an approach which equally valued BSL and English. This has had huge costs for the state and devastating costs to deaf people’s quality of life. Greater research and health economic models are required to show the savings made by the reduced incidence of language deprivation, alongside the ethical arguments for prevention.

An estimate of the lifetime economic costs and benefits associated with early access to BSL for deaf children shows that it is likely to be cost-effective and provide positive economic returns across the lifetime, generating up to £14 per £1 invested like other early years schemes such as Best Start in Life (formerly Sure Start). “Early access to BSL is a human-capital investment that supports cognitive development, education, employment, and health over the life course.”^{[footnote 344]}

With advances in technology (for example, hearing aids and cochlear implants) many deaf children have access to developing spoken language, but even if they achieve good hearing levels, some will still struggle to acquire spoken language or may not be able to use hearing technologies. The 30% to 40% of deaf children with additional needs are at greater risk of language deprivation including those who are deafblind.^{[footnote 345]}^{[footnote 346]} Some deaf children have neurodevelopmental conditions, socio-communication difficulties, attention difficulties, learning difficulties or difficulties with the brain processing what they hear through devices. These needs are often not identified until after the critical language acquisition period and can go completely unidentified due to overshadowing by deafness. These needs may relate to difficulties with cognition, sensory processing or attention that will make speech processing and lipreading difficult. This includes those with developmental disability, ADHD or autism (3.5% of autistic children are deaf).^{[footnote 347]}

Some children with sensory issues will find hearing technologies uncomfortable and difficult to use. There is no way of knowing in advance which children will struggle. Hearing technologies do not always succeed and sign language is often not offered until other options have failed. An estimated 10% of people born deaf will lose their vision either due to genetic syndromes (3% to 6% have Usher syndrome) or lifetime risk of acquired vision loss so it is essential they learn to sign in early childhood before they lose their vision. Early BSL input would provide a protective foundation for all deaf children and should be provided to families as soon as deafness is identified.

BSL input should be offered free of charge for hearing families of newly diagnosed deaf children, alongside specialist early years provision, including in-home support. This has long-term savings for the Treasury. If we can get the early years right for deaf children, we can set them up for life. Current provision is inconsistent across the UK. Parents must find out about BSL on their own and pay to learn it. But courses are not affordable or tailored to parenting needs, and there is a lack of joined-up working with local authorities to ensure nationally consistent provision.

There is a need for national directives about which government department is responsible for funding, as this provision often falls into a gap between early years education, adult education and social care.

Children with good spoken language acquisition or lesser levels of hearing loss will still benefit from learning BSL from diagnosis.

These reasons include:

children are more likely to meet their language milestones at the expected age^{[footnote 348]}^{[footnote 349]}
relief from listening effort – there is evidence that deaf children using hearing devices and lipreading expend more listening effort and cognitive resources than hearing peers to fill in gaps in sound information,^{[footnote 350]} leaving less learning capacity for other tasks and causing cognitive overload and chronic stress^{[footnote 351]}
reduction of communication deprivation – where deaf people are left out of family conversations and have reduced opportunities for incidental learning, picking up general knowledge and social skills
communication during everyday situations where speech, lipreading and hearing devices are insufficient – for example, during swimming lessons or at bathtime, bedtime or in background noise
if hearing technology fails or residual hearing worsens, which can cause trauma if a deaf child is left without any means of communication with their family and friends
use of only spoken language is no guarantee of good mental health – even among the new generation of early identified deaf children with good hearing technologies, their wellbeing is poor compared to hearing children,^{[footnote 352]} so learning BSL and mixing with other deaf children has clear benefits for wellbeing and mental health^{[footnote 353]}
opportunity for Deaf community membership, a sense of belonging, positive self-conceptualisation and Deaf identity – knowledge of BSL leaves the door open if they wish to embrace these either in childhood or adulthood, and Deaf community participation and BSL is associated with better mental health and wellbeing in deaf people^{[footnote 354]}
access to reasonable adjustments – knowledge of BSL provides access to interpreters and services, and accessibility options within employment and education, while those who do not know BSL have fewer accessibility options and may struggle more
access to Deaf adult role models – to show families that deafness is no barrier to meaningful and successful lives and careers, raising expectations, increasing positive identity and ensuring the transmission of BSL and Deaf knowledge about how to live well in society across the generations
BSL provides a solid foundation – families can go on to use other communication approaches but BSL encourages healthy Deaf identities, self-determination and family cohesion^{[footnote 355]}

Good practice: Family BSL curriculum

The National Deaf Children’s Society offers a tailored family BSL curriculum providing a basic level, with over 74% of families completing the introduction course going on to use signs with their deaf child every day or most days.^{[footnote 356]} Families wishing to become fluent in BSL must pay for further courses.

There is currently no legislation that secures the provision of BSL learning for families but the Children Act 1989 imposes a duty on local authorities in England to safeguard and support the welfare of children in need.^{[footnote 357]} Deaf children fall within the definition of children in need. Section 27 of the Children and Families Act 2014 also requires local authorities in England to keep provision for disabled children under review and consider how this is sufficient to meet needs.^{[footnote 358]} The United Nations Conventions on the Rights of the Child and on the Rights of Persons with Disabilities, which have been ratified by the UK government, also support provision for families to learn sign language.^{[footnote 359]}^{[footnote 360]}^{[footnote 361]} These conventions recognise sign language access and the development of a deaf child’s linguistic identity as essential components of inclusive, rights-based education and family life. Clear policy is now required to secure the routine funded provision of BSL learning for families of deaf children in their early years.

Lived experience

I was incredibly lucky to have been offered both BSL Level 1 and 2 free by the wonderful sensory support service in Bromley. They also offer free Family Sign. As a parent of a child who is diagnosed with mixed bilateral hearing loss, this has been invaluable. Although my daughter is aided in both ears, when she was younger, she would often refuse to wear them and even now she becomes tired of having them in and needs a break. Communicating with her without her hearing aids is very difficult, however, it would have been almost impossible without having learnt some BSL. The BSL has allowed us to continue communicating when she is unable to hear speech. Not only this but she has been able to show her teachers and friends some useful signs. We are also both able to communicate with members of the Deaf community of which she is part of. As a single mother working part-time, paying to learn BSL would not have been an option. Hearing families do not have to pay to learn English; families with deaf children should not have to pay to be able to effectively communicate with their children.

(Hearing parent)

6.6 Sign language therapy

In the UK, while speech therapy is often provided there is very little provision of sign language therapy for children and adults. This is language therapy that targets the development of BSL in children or rehabilitation for adults. Without such therapy for deaf children, the risk of language deprivation is increased. In the absence of specialist British Sign Language therapy (BSLT) expertise, deaf children with developmental language disorders (unrelated to deafness) are not identified despite an equivalent prevalence rate of 6% in deaf and BSL-using children.^{[footnote 362]} Developmental aphasias are also overlooked. Deaf adults also do not get equitable BSLT services for acquired language and communication difficulties, including aphasia after a stroke.^{[footnote 363]}

Identified barriers include the following.

Inconsistent speech and language therapy (SaLT) services for deaf children

These are inconsistently commissioned and there is no integrated pathway between health, social care and education. Referral does not automatically happen after deafness is identified.

Speech and language therapists who have specialised in working with deaf children often do not know BSL

Interventions typically focus on speech and listening. Practitioners who do sign are professionally isolated and there is a lack of BSL-related supervision and support.

Lack of equitable access to BSL therapy

There is limited availability of BSL therapy and no professional register of speech and language therapists proficient in BSL. Most SaLT services do not have the skills to work with deaf BSL users or a good understanding of BSL bilingualism. Many areas do not have a specialist SaLT service for deaf children. There is no specialist BSL adult service in the UK. The only provision is within specialist mental health teams in England. There is limited data about the number of people receiving SaLT where BSL is their first language.

Delayed intervention

SaLT for deaf children is often received only after escalation of need due to a lack of earlier support.

Inappropriate interventions

Commissioners and managers may be unaware of the differences between BSL language therapy delivered by a fluent language user and sign-based language programmes designed for children with learning disabilities (for example, Makaton). People are often offered unsuitable SaLT using English or Makaton even though their dominant language is BSL.

Issues for adult BSL users

Deaf BSL users experience acquired language impairments with the same incidence as the general population but rarely receive SaLT services (for example, after a stroke, brain or physical injury that affects their signing). Interventions are often limited to advice related to swallowing, with no protocols for conducting BSL assessments or interventions. Language therapy and assessment via interpreters is limited in effectiveness. Deaf adults have often had negative childhood experiences of speech therapy and do not seek support for acquired BSL difficulties. Significant communication disorders are often missed in deaf adults because clinicians do not pick up a change in their BSL skills.^{[footnote 364]}

Under referral

Approximately 80 BSL users in the UK each year need SaLT for stroke-related language impairments, yet very few receive services, with serious under-referral and overshadowing.^{[footnote 365]} Within a community SaLT service in Liverpool, only 2 deaf adult BSL users were referred in the past 2 years – both for swallowing difficulties. Similarly, in a community neurorehabilitation service in Croydon, no BSL users were referred in 4 years. Within a professional network for therapists familiar with deaf people, the only referrals received by SaLTs were for deaf people with mental health needs via specialist deaf services. Within general services, none had received a referral for acquired language impairment. Only 3 had received referrals for swallowing, suggesting that BSL users are missing out on both swallowing and language therapy.

Therapy groups run by charities

There is a lack of dedicated aphasia support for BSL.^{[footnote 366]}

Few assessment tools and intervention protocols

There are some BSL assessment tools for deaf children and adults but further research and development is required to develop more protocols and further tools.^{[footnote 367]} Therapists report difficulties with assessing equivalence of proficiency in English and BSL in bilingual learners due to a lack of research and tools.

Training issues

SaLT professional training does not include the requirement to learn BSL or how to meet the needs of the deaf population. Deaf people and deaf BSL users are excluded from SaLT training courses because of requirements that SaLTs should be able to identify speech pathology, and the lack of willingness of providers to make reasonable adjustments. The Royal College of Speech and Language Therapists does not provide guidance on this issue. Currently, SaLT is one of the few clinical professions in the UK that has no qualified deaf BSL-users as practitioners. There is a lack of training pathways for deaf language specialists who work alongside SaLTs.

An initial training programme has been developed for upskilling SaLTs and training deaf language assistants in UK schools.^{[footnote 368]}^{[footnote 369]} But the establishment of an alternative training pathway is vital to enable the accreditation of a new SaLT profession in the UK. This needs to include national standards, a curriculum and training.

Until major changes are made to the profession’s approach to sign language therapy and to allowing BSL users to train as language therapists, deaf signers will not receive the language therapy that they need and deserve.

Question 9

7. Limited access to the social care system

Accepted Answer

https://www.youtube.com/watch?v=CJjk2nDdWOc

There are critical gaps within the social care system, social work, and residential care and in-home care provision, which lead to inequity, social isolation and potential harm for BSL users. We are failing to meet people’s needs, particularly those with complex needs. The lack of specialist deaf social work services affects the fair and timely fulfilment of statutory responsibilities, duties and powers. For example, a deaf person may receive inappropriate support or have to wait longer compared to a hearing person.

Specialist sensory teams and specialist social workers – who had a deep knowledge of BSL, Deaf and Deafblind communities and cultures – existed for many years alongside generic social work provision. This changed when government departments separated into adults and children’s services, which meant most specialist teams providing support from birth to death were disbanded, with a shift to teams defined by provision themes (for example, disability teams or mental health teams). This further reduced the focus on specialisms. Today, there are only a handful of specialist sensory social work teams working with deaf and deafblind people. This has consequences, especially for the effective and equitable fulfilment of the statutory element of social care, which is led by social work. Social workers carry out duties, powers and responsibilities prescribed by legislation for children and adults. This includes the statutory assessment of eligibility for service provision or inter-agency adult and child risk investigations into deprivation of liberty. Understanding and knowledge of how the language and culture of BSL users might affect these processes is central, and failure to account for it when non-specialists are involved raises serious questions about equity of process and outcome. Few social workers or councils engage a deaf specialist worker to understand the cultural implications of any legal case. Relying on a non-BSL interpreter for linguistic access is not enough within specialist social care and statutory assessment processes. Yet, there is no mandatory audit of the appropriate provision of sign language interpreters in meeting statutory duties in social work and social care for deaf people, so unmet needs go unnoticed.

Cultural and linguistic recognition

BSL users are rarely defined as a cultural and language group in policy, statutory guidance and practice, so cultural and linguistic provisions are not considered during assessment or decision-making. The specific language, culture, identity and developmental differences of deaf and deafblind people are not well understood by the professionals who make decisions about their care. BSL must be considered as a cultural need in social work and when reforming the law (for example, the Care and Mental Health Acts). Eligibility for services and assessments of needs are currently not nuanced enough to meet the needs of BSL users, and generic social workers cannot interpret the criteria. For example, breaking a leg might be seen as a mobility problem but for an older deaf person living alone who cannot travel to see friends, it quickly becomes a mental health concern.

Generic social workers, without any additional experience or training in Deaf culture, are expected to:

assess deaf and deafblind people’s care needs
source suitable provision
recognise their preferences to receive services in BSL or alongside other BSL users

Inadequate professional guidance and training for generic social workers has serious consequences for the rights of BSL users to receive appropriate care. This has had an effect on statutory decision-making such as child or adult safeguarding and detainment under the Mental Health Act.^{[footnote 371]}^{[footnote 372]}^{[footnote 373]}

There is an assumption that social workers just need to work with a BSL interpreter. But this ignores the need for specialist knowledge about the unique intersectional culture, linguistic and disability needs of deaf and deafblind lives. There is also a huge variation in their ability to communicate with a BSL interpreter and understand variations in the quality of interpreting provision. There is a lack of recognition and engagement with BSL advocates and expert deaf or deafblind professionals, which is essential to fulfil statutory duties. As a result, BSL users do not receive an equitable service, as statutory duties, powers, and responsibilities defined in law are carried out without considering their needs.

Deaf and deafblind people are slipping through the social care net due to the lack of specialist assessment and direct BSL provision. Many do not trust that their needs will be understood or met by generic social work teams, with poor BSL access to information and understanding about the choices available.

A 2014 report on social care provision for older deaf people highlighted the importance of meeting Deaf cultural values and needs, and that BSL users often prefer to be cared for alongside other BSL users.^{[footnote 374]} There also needs to be sensitivity to social dynamics within the Deaf community, and to historic and regional changes in BSL, which mean that older signers may use different variant signs.^{[footnote 375]}^{[footnote 376]} Mainstream residential and day care services for older people are consistently unable to provide cultural competence, with poor communication causing high levels of isolation, depression, poorer wellbeing and health outcomes.^{[footnote 377]}

Lived experience

I’m lonely. No one to talk to. I watch people laugh and talk. I have to watch and wait for my moment to ask for a drink. I can’t say to staff, ‘I’d like a little more or less in my drink’. I try to teach staff BSL but they don’t understand’.

(John Skinner, Daily Mail)^{[footnote 378]}

7.2. Workforce training and development

There is an acute need for training of generic social workers and mainstream care providers to improve their:

BSL skills
deaf and deafblind awareness
cultural competence
knowledge of how to book and work with BSL interpreters

In some cases, there is a lack of awareness about when to involve an interpreter or specialist worker, with the assumption that a deaf person can manage in English if they have some spoken language or can follow what is written down. Training is critical for social workers involved in statutory child and adult protection, ‘child in need’ assessments, best interest assessor work, and assessment of need under the Care Act or Mental Health Act.^{[footnote 379]}^{[footnote 380]} In residential care settings and in-home care, staff often lack sufficient training to communicate effectively with BSL residents. This increases the residents’ isolation and creates risks for care provision because they cannot communicate basic needs.

Nationwide shortages of BSL care

There is a clear relationship between the demise of specialist social work provision and the crisis in specialist BSL care provision. Care Act 2014 assessments are often not appropriate or proportionate for BSL users’ needs. This is because assessors lack BSL skills, Deaf awareness and cultural understanding, and there are false assumptions about needs and a lack of recognition of unmet needs.^{[footnote 381]}^{[footnote 382]} Non-specialist teams and social workers make decisions about care placements, day care provision or in-home care, but cannot use BSL and are unfamiliar with the issues deaf and deafblind people face. There is no centralised register of specialist BSL placements or service providers to help social workers find suitable care. Information about BSL provision is not available on the CQC website. Budget pressure and a lack of knowledge of relevant care providers and agencies mean that local authorities may be reluctant to fund specialist out-of-area provision. With fewer social services referrals, BSL specialist care homes and other provisions (often run by charities) have had to close. So BSL users are increasingly receiving unsuitable provision that does not meet their communication needs.

There are no legal or clear statutory directives within the Care Act 2014 to meet the needs of deaf BSL users who require residential or nursing care homes. Without skilled sensory teams to advocate for increased BSL provision to commissioners, the desperate need for more specialist services for deaf and deafblind people is overlooked.

Lack of BSL residential and nursing care homes

There is a chronic lack of BSL nursing homes, specialised residential care placements and other forms of care provision, such as respite care, day care and in-home care. There is currently only one dedicated residential service for older deaf BSL users in the UK: a nursing home located on the Isle of Wight. There is also supported living provision within a general residential service in Derby, which includes some specialist support for deaf residents. There are very few specialist placements suitable for deafblind people. There are patchy home care services run by and for deaf BSL users but this is stretched as demand outstrips supply. There is also a lack of specialist provision for BSL users who are autistic, learning disabled or who have brain injuries or dementia. Families must fight for suitable care and often must choose between an inclusive placement, often several hours away, or staying close to family in a hearing environment.^{[footnote 383]}

Lack of care adds pressure to NHS

The social care system frequently fails to provide suitable home care or residential placements that are culturally and linguistically accessible to BSL users. As a result, many people experience repeated unplanned hospital admissions in the final year of life. These could be avoided with better, more inclusive support at home or in care settings. The flow of deaf and deafblind people through the health and social care systems has worsened with the closure of specialist local authority deaf and sensory support teams and the move to generic provision. Delayed hospital discharge of patients is common due to a lack of suitable BSL care placements.

Communication and sensory deprivation in unsuitable care provision

Care is not just about meeting physical needs – emotional wellbeing, communication and mental stimulation are equally essential. Without regular, meaningful communication, deaf and deafblind people can become intensely isolated. They often suffer severe communication and sensory deprivation in unsuitable care provision, where no one knows BSL and there is poor awareness of their basic needs. This results in a rapid deterioration in their wellbeing and ends vital connections to their BSL communities.^{[footnote 384]} One deaf resident described this as feeling “imprisoned”.^{[footnote 385]} Another stated, “My communication is limited to ‘thumbs up’.” There are risks to safe care where communication is limited. “If care staff cannot use BSL, they cannot respond culturally or linguistically to their Deaf residents to safeguard them and promote their wellbeing and safety.”^{[footnote 386]} A survey by Action Deafness reported that three-quarters of BSL users worry about care needs, access to sign language and connection to the Deaf community as they get older – 44% would consider moving to a BSL housing village for older deaf people.^{[footnote 387]}

Inadequate home care and community support services

There is limited availability of BSL-proficient home care and community care due to a lack of specialist agencies and BSL-trained staff. BSL users often receive care from people who cannot sign, so they cannot communicate their needs.^{[footnote 388]} Many (but not all) would prefer a deaf or BSL-proficient care worker. Deaf home care agencies face significant financial and staffing challenges. They have a high turnover of skilled personnel and a constant need for new staff training due to competitive pay for BSL skills in other sectors. They usually charge more than hearing agencies due to the higher pay rates necessary to attract and retain staff with BSL skills. There is a lack of consistent pay scales for varying client needs and levels of BSL fluency. There are VAT burdens for smaller agencies that are not CQC registered, limiting their competitiveness and impeding the growth of specialist BSL provision. Many deaf-led home care agencies find it challenging to become CQC registered due to communication barriers during the registration process. Without registration, they cannot offer personal care. BSL home care agencies usually have a minimum 2-hour callout, which clashes with local authority requests for shorter calls. They also have funding limitations, where budgets rather than BSL needs may be the main factors in decision-making. These factors make it difficult for BSL care agencies to thrive and for BSL users to receive appropriate care. There are issues with agencies or BSL service providers claiming specialisms in working with deaf people with additional needs (for example, autism, mental health, deafblind) although these are not reflected in their practice, and there is little oversight or regulation.

Failures in care planning and commissioning

Much of the BSL care home provision run by charities has closed over the last decade and there has been no commissioning of services to fill the gap. The private sector has failed to step in to provide solutions to this crisis because a low incidence and thinly spread population make it difficult to be profitable.

7.3 Legal duties and gaps

Local authorities and care providers are legally required to uphold the rights of disabled people under the Equality Act 2010. The care and support statutory guidance (sections 6.22 and 6.23) explains how local authorities must apply and interpret the Care Act 2014, requiring them to provide assessment information in accessible formats and to consider communication needs from the first point of contact.^{[footnote 389]} It states the need for specialists or interpreters to support communication for people with communication difficulties. In addition, sections 6.39 to 6.97 provide detailed advice on working with deaf and deafblind people during the assessment process. This includes recommendations for involving professionals with appropriate training and communication skills, highlighting the importance of cultural and linguistic understanding in the assessment process. These provisions emphasise the need for skilled, appropriate involvement, but still do not require that BSL or tactile BSL be reflected in planning or commissioned residential care.

This gap is compounded when the cost of BSL communication is not covered by personal budgets after a Care Act assessment. While section 10.23 acknowledges that many local authorities use computer-based formulas to calculate budget allocations, it clearly warns that such approaches may fail to capture the complexity and cost of care for people with multiple or complex needs (such as some deaf and deafblind people). It explicitly states that “a one-size-fits-all approach to resource allocation is not taken”, recognising that tailored, often more expensive support may be necessary. But in practice, many resource allocation tools fail to account for the cost of linguistically accessible care, such as access to BSL-proficient staff in residential settings.

Under section 18 of the Care Act 2014, local authorities have a statutory duty to meet an adult’s eligible care and support needs.^{[footnote 390]} Where those needs cannot be met locally, such as when no BSL-accessible residential care exists, the local authority remains responsible for arranging and funding care, including commissioning out-of-area provision. This duty is reinforced in the statutory guidance (paragraphs 19.48 to 19.58), which confirms that when a person is placed in accommodation in another area, they remain ordinarily resident in the placing authority’s area, so retaining their right to care.

Together, these legal duties and guidance provisions make clear that where BSL or tactile BSL is a core communication need, it must be treated as essential, not optional. If local services cannot meet these needs, authorities must act. The absence of explicit requirements in care planning and commissioning undermines consistency and equity. National standards are urgently needed to ensure deaf and deafblind people receive care that is linguistically and culturally appropriate, wherever they live.

Good practice

Specialist provision in Ede, Netherlands:

The Gelderhorst centre provides 117 sheltered apartments for individuals and couples, 64 residential care apartments, a nursing home, a specialist unit that supports older people with dementia, and social facilities for older deaf people.^{[footnote 391]} The purpose-built environment is designed for sign language communication with tactile accessibility so that deafblind people can navigate the site independently. All staff are deaf or can sign, and tailored healthcare, such as dementia assessment and social activities, is provided. Connections are maintained with the wider Netherlands Deaf community, with reduced isolation and loneliness, and flexible care as needs change.

Building capacity in mainstream residential care provision in Sheffield:

The Ravenscroft residential home provided dedicated BSL provision for 20 deaf residents in a 60-bed home. BSL-proficient staff ensured that residents could remain part of the South Yorkshire Deaf community. But the home closed in 2011 and residents were then isolated in care homes with no provision for deaf people. Unlike many areas, Sheffield has a specialist sensory team. An innovative deaf social worker established a BSL café in 2 mainstream local care homes, with a deaf sensory team support worker teaching BSL to the hearing residents and staff improving basic communication for the only deaf resident in each home. It is hoped that this scheme will build capacity and skills so that other deaf people can come to these homes in the future. This innovation would not have been possible without individual leadership and deaf expertise within the local specialist sensory team. But it is a slow and resource-intensive process without commissioning support.

Lack of BSL-proficient advocacy services

Deaf and deafblind people face significant barriers in accessing advocacy and citizen advice services. Mainstream advocacy providers usually lack the cultural understanding and communication skills needed to work with deaf and deafblind people, which forces people to navigate complex systems without adequate support.

Local authority BSL advocacy provision is inconsistent and often fails to align with the Care Act 2014, which entitles service users to independent advocacy. The practice of assigning hearing advocates with insufficient knowledge of BSL and cultural and communication needs further hinders support. Deaf advocates or those with expertise in BSL are not consistently involved in proceedings where an independent mental capacity, mental health advocate or Care Act advocate is required by law.^{[footnote 392]} Often, non-signing advocates are used due to a shortage of independent BSL-proficient advocates. An increasing number of deaf people provide specialist services in child protection investigations and safeguarding processes but there is no central register available to social workers.^{[footnote 393]} Social workers may mistakenly see an interpreter or communication professional as fulfilling an advocacy role and overlook the need for a separate advocate. Advocates must always be booked in addition to interpreters.

Information, advice and guidance (known as IAG) services are shouldering the responsibility for systemic failures in NHS accessibility, forcing people working in these areas to fill roles that should be addressed by NHS services, such as explaining medical and health information and navigating healthcare systems. This is a responsibility that should be a standard part of NHS service delivery, but its absence highlights the need for the NHS to fully implement the AIS, ensuring that communication needs are identified and met. By doing so, the burden on IAG and advocacy services would be reduced, allowing staff to focus on their primary roles rather than compensating for systemic inadequacies.^{[footnote 394]}

Many BSL users require literacy support to understand English language documents and navigate services, but local authority provision is patchy and inconsistent. This affects their ability to know and access their rights and entitlements under social care provision, in day-to-day life and when seeking employment.

Good practice

VRS services provide on-demand literacy support with translation of documents to and from BSL via video call to a qualified BSL-English translator.

Mental Health Act 1983

Research examining the impact of BSL-interpreter mediated assessments and compulsory detention under the Mental Health Act 1983 showed poor awareness among approved mental health professionals of the linguistic and cultural adaptations required in statutory assessments and service delivery.^{[footnote 395]}^{[footnote 396]} Deaf BSL users are not seen as a cultural group but only from a disability perspective. Generic social workers usually lack cultural and developmental knowledge about deaf people, and do not appreciate generational differences in their experiences with changes in technology and education. They may not recognise cultural differences in how questions are asked or how the norms of a situation might be understood. The expertise of deaf professionals, such as specialist social workers, advocates, intermediaries and deaf relay interpreters, is rarely recognised or included in everyday social work practice. BSL interpreters have been poorly prepared and showed some fundamental misunderstandings about the Mental Health Act and its requirements and processes. Social workers and interpreters require deeper training and practical guidance when working together to achieve better outcomes for deaf and deafblind people.

Safeguarding adults^{[footnote 397]}

Communication barriers and a lack of BSL access to knowledge and information about abuse, sexual abuse and safeguarding procedures make deaf and deafblind people more vulnerable. There is often a poor understanding of issues of consent, boundaries, risks and reporting abuse, and the lack of accessible channels to disclose and report abuse. The lack of BSL-proficient social workers and systemic barriers to BSL access to the police and justice systems reduce the ability of deaf adults to report all types of abuse. Issues are further compounded for deaf men by societal and Deaf community stigma stopping male domestic or sexual abuse victims from coming forward. There is a lack of dedicated support services for male survivors of domestic and sexual abuse.

Deaf and deafblind people can be more susceptible to financial abuse and exploitation, particularly when relying on family members for interpretation, while making wills or when other people have Department for Work and Pensions (DWP) appointeeship or power of attorney.^{[footnote 398]} Sometimes families take control of finances or benefits due to the person’s difficulties in using the phone or reading English rather than a lack of capacity or ability to handle their finances. However, some appointees have been exposed for siphoning (stealing) funds or not acting in the best interests of a person. Sometimes young people, despite having the mental capacity, never get an opportunity to learn to handle their own affairs. Others require support when family members pass away.

Capacity and power of attorney

Importance of using qualified BSL interpreters or BSL-proficient assessors

Without the presence of a BSL interpreter or BSL-fluent assessor, a capacity assessment or power of attorney (POA) is not likely to be valid. Family members should never be relied upon to interpret. A registered, qualified BSL-English interpreter, along with an intralingual interpreter who ensures BSL is tailored to a person’s understanding, should always be present for capacity assessments and POA meetings. This reinforces the need for professional interpreters to ensure impartial communication and protect vulnerable people.

It is essential to ensure that solicitors and capacity assessors are aware that providing qualified BSL-English interpreters or a BSL-proficient assessor with POA experience is essential.

Power of attorney awareness

Within the Deaf community, POA is not a well-known option. Deaf people may not understand the difference between the 2 types of POA or that it is for when you are alive and best applied when you have full mental capacity. Many deaf people will struggle to understand the English terms used in the POA process and to grasp that they are giving powers to handle their affairs to another person.

Accessibility

Deaf people face significant barriers in accessing information, legal forms and support to make informed decisions about POA due to the lack of BSL resources and the reliance on written English. BSL translations of the main documents, community outreach programs, BSL-accessible helplines, and mandatory provision of qualified interpreters at legal appointments would help address this.

Power of attorney certificate providers must be able to communicate with donor

The certificate provider should be a person who knows BSL and can communicate directly with the donor. This is to confirm that the donor is making the POA decision while informed, competent and of their free will.

Control by families or others

Assessors need to be alert to how well the families or other involved parties can communicate with the deaf person because often this is very limited, and whether they may seek to control (or inadvertently control) the process in ways that do not reflect the individual’s wishes or best interests. The involved parties may not be able to communicate effectively in BSL or be familiar with the best ways to support a BSL-user in their decision-making. This also applies to DWP appointeeship.

Mental capacity

Capacity assessments: assessing mental capacity in deaf people requires expert knowledge of BSL and Deaf culture to avoid misinterpreting communication styles and language deprivation as a lack of capacity.

Interpreters: accredited best interest assessors who carry out capacity assessments must always work with a qualified BSL interpreter, but this often does not happen.^{[footnote 399]} Deaf intermediaries or intralingual relay interpreters should be employed to ensure the best possible communication.

Guidance recommends direct BSL assessment without relying on interpreters: a senior Court of Protection judge stated that assessors should ideally be suitably qualified in BSL and have experience of understanding deafness and engaging with the Deaf community, or a clear explanation should be given about why they are assessing without such knowledge.^{[footnote 400]}

Communicating decisions: the professional who is assessing capacity should be skilled in using deaf-friendly communication and visual resources (pictures, diagrams, gestures) to assess whether a deaf person can retain information, weigh up their decision and communicate it. Or they should book an intralingual interpreter in addition to a BSL-English interpreter.

Assumed lack of capacity: too often deaf and deafblind people are assumed to lack capacity when really they just lack access. This highlights the critical need for culturally-competent assessments that differentiate between communication barriers and genuine cognitive impairment.

Culturally-competent assessments: the impact of Deaf cultural beliefs and values on decision-making should be considered. Deaf and deafblind wishes and values may differ from the dominant hearing value system. Assessors should be familiar with how deaf and deafblind BSL users express themselves and process information in a different modality from spoken language, including how they conceptualise issues in a visual, spatial or tactile manner, which may differ from the typical verbal processes assumed by assessors without BSL. Assessors who do not know BSL may misinterpret responses or fail to ensure clear communication, which leads to inaccurate assessments.

Training: BSL awareness and cultural competency training is essential before undertaking capacity assessments.

The split of children’s and adult services following social care integration legislation has had a profound impact on statutory social work provision for deaf children and deaf parents, and their families.^{[footnote 401]} Generic social work provision is now the norm. There is now only one specialist team in Kent for deaf and deafblind children and families in the UK.^{[footnote 402]} This means that families do not receive adequate and timely support after diagnosis or at times of need, and child protection services are lacking a specialist response suited to deaf children’s needs.^{[footnote 403]} Generic social workers do not usually have the knowledge and skills to apply statutory duties, powers, responsibilities and safeguarding when supporting deaf children and their families.^{[footnote 404]}

What is needed

A clear early years pathway of support for families of deaf and deafblind children from diagnosis to starting school. This should outline the professionals and agencies involved and the support the child and family needs.

Consistent approaches working in partnership with health, education and social care to support deaf children and their families immediately after diagnosis, to prevent language deprivation and support optimal language and cognitive development, with free BSL tuition for all family members.

‘Communication at home’ programmes for families with pre-school deaf and deafblind children. These programmes promote early BSL vocabulary and positive communication skills.

Role models – families and children should be introduced to deaf and deafblind professionals and role models, demonstrating the possibilities for people and raising expectations.

Parenting courses and support groups for hearing parents of deaf and deafblind children.

Accessible BSL parenting courses and support groups for deaf and deafblind parents. Provision of family-tailored parenting courses for those at risk of family breakdown.

Early help, Best Start in Life (formerly Sure Start) and toddler groups for deaf and hearing parents and their children, with BSL support to facilitate good communication for all.

Routine ‘child in need’ assessments for all families with deaf children to find out whether additional provisions are needed to help children and families thrive.

Effective safeguarding assessment when concerns are raised to support families, decrease risk and protect children.

Risks and costs of insufficient early years support

Lifelong language deprivation in deaf and deafblind people: This leads to higher support needs, less economic activity and greater dependence on the state.

Increased family stress and escalation of need: Deaf children and their families usually only come to the attention of social work when serious safeguarding concerns have arisen and major risks are present. But earlier, routine and supportive contact could have prevented crises, avoiding family breakdown and statutory proceedings.^{[footnote 405]}

Longer-term educational costs: Children who do not receive early support are likely to need more intensive education interventions. This can lead to higher educational costs, including special education services, personalised support, and extended school years.

Healthcare costs: Failure to address the emotional, behavioural and cognitive effects of lack of early support may lead to increased use of mental health services (by both deaf children and their families), language therapy, and other health-related services and assisted living, all of which increase state costs.

Impact on future employment and economic independence: Deaf children who do not receive adequate support may face challenges entering the workforce or accessing higher education, limiting their long-term earning potential and independence, and placing financial strain on families and society. Deaf children have lower levels of attainment, evidenced through reports by the Consortium for Research in Deaf Education.^{[footnote 406]}^{[footnote 407]}

Social inequality: Without early intervention, deaf children may face long-term social and economic disadvantages. This can perpetuate cycles of poverty and inequality, as they may not have the same opportunities to succeed as their hearing peers.

Investment: By investing in early years support, we can mitigate these risks and costs.

Challenges to provision^{[footnote 408]}

No routine social care provision for families of newly diagnosed deaf children: Social work services are not offered to families as a universal service following diagnosis in the same way as education and health. Social work is functioning as an emergency service and there is a lack of supportive early interventions to prevent escalation of problems.

High thresholds for referrals: Services for children and young people often have high thresholds for accepting referrals for deaf children, particularly those without learning or physical disabilities. This results in missed opportunities for crucial early intervention and support. Social workers should work with parents and the wider family to build better developmental environments. Instead, referrals are frequently accepted only in a crisis and thresholds for service response are high. As a result, deaf children may only receive support when safeguarding concerns arise or if they have additional disabilities.^{[footnote 409]}

Support for transitions: Referral thresholds mean that deaf children miss out on support when moving from school to independent living, despite the statutory requirement for planning for adulthood meetings for all disabled children. Successful models exist where sensory adult teams have dedicated links with services for children and young people, enabling transitional support for deaf children preparing for adulthood. This model should be more widely adopted.

Failure to identify as ‘children in need’: There is a failure to identify deaf children, or hearing children of deaf parents, as children in need under the Children Act 1989 and subsequent legislation, to whom support should be extended.

Lack of dedicated specialist teams: There is only one specialist deaf and deafblind children’s team for the UK, based in Kent.^{[footnote 410]} There is a lack of trust that generic social workers will have the required specialist BSL knowledge.^{[footnote 411]}

Inconsistent approaches across local authorities: Across local authorities, there is a lack of consistent children’s services and sensory services. Children’s Hearing Services Working Groups tasked with considering social care for deaf children and young people operate with significant inconsistencies across the UK, with some inactive.

Insufficient consideration in education, health and care plans: Recommendations for education, health and care plans often lack detail due to a limited understanding of the needs of deaf children and their families.

Transport barriers: Some local authorities do not provide transport for deaf children under 5 years, preventing these children from attending specialist early years providers.

Young carers: More dedicated support is required to meet the needs of children of deaf adults who are caring for family members.

Safeguarding and child protection

There is a systemic lack of planning by local authorities to improve their response to deaf and deafblind children’s and young people’s safeguarding and protection, or the needs of deaf parents.^{[footnote 412]}

There is a lack of data about the representation of deaf and deafblind children in child and young people protection cases, despite evidence that they are more vulnerable to abuse.^{[footnote 413]}^{[footnote 414]}^{[footnote 415]}

Communication barriers for deaf children and deaf parents mean that opportunities for child protection and safeguarding are missed or not addressed until a crisis point, leading to missed opportunities for early intervention and support.^{[footnote 416]} Local authorities show a poor understanding that deaf children and families need additional support, especially when reporting abuse or making a disclosure.^{[footnote 417]}

Thresholds for intervention to protect deaf children and young people are generally high, and support for struggling families is lacking.

Assumptions from generic social workers about what might be ‘normal’ development or behaviour for a deaf child – and low expectations – can mean that signs of abuse or developmental delay are missed.^{[footnote 418]}

Incorrect assumptions are often made about how well deaf children can understand spoken language, leading to social workers attending child protection meetings and child interviews without booking BSL interpreters, even when the child’s strongest form of communication is BSL.^{[footnote 419]} Hearing professionals overestimate how well deaf children and young people can understand them.^{[footnote 420]}

There is a lack of routine children in need assessment and understanding of the need for BSL-specialist social workers who can accommodate the complexities of deaf children’s developmental differences.

Specialist social work professionals should be involved in early intervention, not just in crises.

There is poor collaboration between child protection teams and sensory teams.

There needs to be a clear and simple process to commission BSL resources when needs arise, without delays (for example, parenting courses).

The availability of specialist guidance for local safeguarding children boards that includes all relevant statutory instruments and guidance specific to deaf children is a positive step.^{[footnote 421]}

Deaf parents and child protection

The systemic biases and lack of Deaf cultural competency within child protection services contribute to the higher rate of child removals from deaf parents.^{[footnote 422]} Deaf parents are marginalised within the system and excluded from full understanding of safeguarding and child protection procedures, due to limited information, absence of parenting courses and bespoke intervention available in BSL.^{[footnote 423]} Sometimes qualified BSL interpreters are not provided, leaving parents with no communication access at all during proceedings. Social workers and legal professionals often lack training and awareness of Deaf culture and how communication nuances can be misinterpreted through interpreters. They may not understand the cultural impact of how questions are asked and answered, which can lead to false assumptions by statutory authorities.^{[footnote 424]} This can also result in misinterpretations of parents’ responses, which have a negative effect on assessments and result in unfair treatment.

Specialist BSL-proficient professionals with expertise in Deaf culture and communication and deaf advocates should be brought in to ensure the rights of deaf parents are not cancelled, but they are often brought in too late in the process, if at all – usually when the case has already become complex. They often must do remedial work, such as helping a deaf person to read legal documents. This reactive approach results in missed opportunities for early intervention and may contribute to the escalation of issues that lead to child removal. Direct specialist provision in BSL builds greater trust and rapport between social workers, legal staff and deaf families.

Improvements should include:

mandatory deaf and deafblind awareness training for social workers and legal teams
increased availability of information and resources in BSL and early involvement of BSL specialist professionals
advocacy and support for deaf parents of hearing or deaf children and deaf children and young people involved in child protection cases in or outside court
deaf specialist experts and intralingual relay interpreters must be engaged during family care proceedings to provide services to deaf parents in need, to ensure their rights are not cancelled out, deprioritised or sacrificed for the sake of the set process (such as allowing the 26-week timetable to be set aside) – an appeal ruling stated this to accommodate the rights of the deaf person^{[footnote 425]}^{[footnote 426]}

Looked-after children, adoption and fostering

Deaf and deafblind children benefit from placement with deaf carers who fully understand their communication and cultural needs.^{[footnote 427]} Deaf and deafblind carers can provide a natural language environment, and encourage a strong sense of Deaf identity and belonging. Children who use or would benefit from BSL are often placed in mainstream care homes or with families that cannot sign, due to significant shortages of deaf and deafblind carers. This is the result of limited awareness and accessibility within fostering and adoption systems – including a lack of BSL-friendly information materials, accessible training and inclusive recruitment practices.

When deaf or deafblind children are removed from their families and placed in temporary or foster care environments where BSL is not used, the impact is not just confusing – it can be deeply traumatic. Without access to their natural language, these children are left unable to ask questions, express fear or grief or understand why they have been removed. This lack of communication disrupts emotional regulation, delays trust-building, and further isolates the child during an already distressing transition.

In contrast, deaf and deafblind carers can offer a natural language environment, where children are supported emotionally and linguistically. This promotes not only communication but also a stronger sense of identity, belonging and emotional resilience. Social workers may not always recognise the full importance of a deaf child’s language and identity needs, yet these are fundamental to their safety, mental health and development.

Adoption and fostering agencies often fail to meet the needs of deaf and deafblind prospective carers. BSL-proficient interpreters are frequently not provided at important stages of the process, including information sessions, assessments and panel hearings, and there is limited BSL-friendly information available. This creates significant communication barriers and places deaf applicants at a disadvantage from the outset. Some councils and agencies also adopt ableist assumptions and deficit-based approaches, viewing deafness and Deaf identity as barriers rather than strengths and protective factors offering a child access to a rich, bilingual and culturally affirming environment. Reform is urgently needed to ensure fostering and adoption processes are accessible, inclusive and culturally competent.

Deaf parenting

90% of deaf parents have hearing children. Deaf parents are capable but face systemic barriers and support inequities across NHS, education and social care services, leading to stress, isolation and mental health. These systemic issues extend to their children, potentially leading to poor educational outcomes and mental health problems, and pressure on children to act as interpreters for their parents.

Main issues include the following.

Gaps in provision: There are accessibility gaps between the end of NHS postnatal care and when a child enters the education system. During these years, deaf parents are extremely isolated, often without any recourse to BSL interpreting provision.

Lack of accessibility in early years settings: Deaf parents and young children are excluded from early years social activities, playgroups, parenting courses, breastfeeding groups and support groups, which leads to isolation.^{[footnote 428]} Legal provisions for reasonable adjustments are not strong enough due to small demand and BSL users rarely receive an interpreter for private provision, nurseries, parenting groups or activity sessions. These groups are also often run by sole traders or small businesses so do not have the budget available to provide access. An unpublished survey by Deaf Parenting UK reports that most deaf parents rarely or never participate in early years groups.

Parenting courses: There are limited BSL accessible courses on parenting skills, either with interpreters provided or with dedicated provision in BSL alongside other deaf parents or individually tailored support.^{[footnote 429]}

Lack of accessibility in schools: Deaf parents often struggle to get BSL interpreters for school events such as parent-teacher meetings, information sessions, performances and sports days. Children are often asked to act as interpreters for their parents in educational settings from a young age.

Lack of guidance: Local authorities and schools lack clear guidance about their legal responsibility to provide BSL interpreters and how to make events and meetings with deaf parents accessible.

High costs of interpreters: The BSL interpreting industry is not set up for smaller bookings or budgets. Half-day minimum charges and rigid booking terms are prohibitive for schools and early years providers and deaf parents wishing to pay for short appointments.

No centralised funding: Accessibility funding is not provided to local authorities to enable all schools and early years providers to provide full access to their services, including BSL interpreters. This places the burden on individual school budgets, which can lead to geographical inequities and unequal treatment of parents who need BSL interpreters.

No statutory provision of BSL interpreting for everyday life

There is a huge gap in the UK for deaf people’s access to BSL interpreters outside the workplace, education or public service settings and yet this is necessary for full societal and economic participation, health and wellbeing.

Annex C lists all the life situations in which interpreters are not currently provided, including those crucial for parenting, maintaining good health and obtaining care.

There is no equivalent scheme for the provision of interpreters for these settings to the government’s AtW Scheme or DSA, which provides support for employment and higher education. Such schemes have well-established economic and social returns, increasing employment, education and reducing dependency on public services.

Personal Independence Payment

It is important to note that Personal Independence Payments partly offset the 80% higher cost of living for deaf people. However, the amount will not cover the full cost of BSL interpreting or the advocacy support required to take a full part in day-to-day life, so other solutions are needed.^{[footnote 430]}

In the UK, individual budgets and direct payments that result from assessment under the Care Act 2014 are a potential way to improve BSL interpreting access based on personal need. But these are not currently used to increase deaf people’s access to communication support or their participation in society, and are means-tested. Eligibility is restricted to those on low incomes and is not routinely available to people who are deaf without other disabilities. Similar schemes work successfully with universal eligibility for all deaf and deafblind people in countries like Australia. The Australian National Disability Insurance Scheme (NDIS) has eased access issues affecting deaf parents, because they can now book interpreters to participate in their local communities in the same way as anyone else. In a parenting survey, 86% of Australian deaf parents reported higher engagement with their local community after receiving NDIS, with less isolation, better mental health and wellbeing, and less anxiety.

Universal access to a central national VRS service, additional VRI, and in-person interpreting provision is essential. Without these, BSL users face barriers to social and economic participation through interaction with businesses and services. Without a universal interpreting infrastructure, services struggle to anticipate when and where support is needed and deaf people are placed at a substantial disadvantage. ‘Levelling up’ must include communication services for the Deaf community. The infrastructure for national VRS and VRI services already exists. What is needed is the political will and investment to broaden its scope and close the access gap for BSL users – ensuring equal participation in public life, services and the economy.

Question 10

8. The needs of intersectional groups

Accepted Answer

https://www.youtube.com/watch?v=2XT_z495OYE

BSL users have intersectional identities and backgrounds (various social and political identities). There is a lack of research on cumulative healthcare inequalities experienced by deaf and deafblind people from different racial and ethnic minority backgrounds, or those with LGBT+ identities or who have additional disabilities.

Ethnic minorities

There is a lack of cultural sensitivity or awareness of the intersections between race and being deaf or deafblind within service delivery or interpreting agencies.

People often experience both ableism and audism (discrimination based on disability or deafness) and racism (discrimination based on ethnicity). They experience double marginalisation in both the Deaf community and Black or other ethnic or religious communities. Healthcare providers may hold biases that affect how they perceive and treat patients, underestimating intelligence or harbouring stereotypes about the patient’s ethnic background and deafness, leading to dismissive attitudes, misdiagnoses or a lack of respect, which result in chronic stress, poorer mental health and healthcare avoidance.

There is a lack of targeted BSL health information for racial and ethnic minority groups that face a higher prevalence of specific health conditions (for example, sickle cell, hepatitis, tuberculosis, cardiovascular disease, diabetes, obesity, types of cancer risk in specific communities, dermatology, female genital mutilation, and mental health). Communication issues for BSL users may be more pronounced for those with English as a second language and when English is not used at home. There is a shortage of BSL interpreters who can use another language like Urdu, Arabic or Punjabi.

Minority ethnic deaf patients may also experience challenges understanding health materials, consent forms or medical instructions, as these are often not provided in accessible formats. Written materials may be in English or another widely used language, leaving out the needs of people who use BSL and other minority languages.

BSL interpreters and service providers require Deaf cultural competence relating to race and ethnic background. The interpreting profession is not sufficiently culturally diverse to meet these needs. Requests for interpreters do not often state or value the need for someone with specific cultural knowledge on deaf issues. Interpreters from ethnic minority groups experience barriers in the profession, with racism, unconscious bias (treating people differently based on stereotyping on race, gender, ability and so on) and tokenism (giving the appearance of inclusivity by following rules) experienced both within the Deaf community and wider society. They often report being assumed to be a patient or unqualified rather than a qualified professional.

There may be greater stigma around deafness in some communities, and greater disability and health taboos.

There are cultural differences in the provision of care and support by families, and the involvement of families in the deaf adult’s health and financial decision-making.

Interpreters and advocates are important to ensure every deaf person has an independent means of communication and the power to make decisions.

There are often wider social inequalities affecting deaf people from minority ethnic groups, including lower socio-economic status, housing issues, poverty and more health problems. Deafness exacerbates barriers to healthcare and economic prosperity.^{[footnote 431]}

Some medical professionals are dismissive of deaf people and overlook their pain. This is compounded for Black and Asian women whose pain and menopause symptoms are more likely to be ignored. There are well-known increased maternity risks for Black and Asian women, with more complications and deaths.

There is a shortage of culturally competent mental health practitioners who use BSL and are also familiar with other cultures. There is inadequate BSL trauma support for cumulative and generational trauma related to prejudice and microaggressions (small passive-aggressive acts).

There is insufficient representation among qualified deaf practitioners, most notably Black male representation.

Medical research and teaching are based not only on White deaf people but also on those who use spoken language and can hear.

There are inequalities within deaf mental health services. For example, deaf children from the Pakistani ethnic group have the lowest referral rates and the shortest average length of intervention time compared to White British deaf children with deaf CAMHS services.

Some well-recognised intersectional inequalities in relation to social work and social care remain ignored and unrecorded for BSL users. For example, it is unknown whether ethnic disparities in rates of sectioning under the Mental Health Act or child removals under the Children Act follow a similar pattern with deaf BSL users because the relevant data is not collected.

Deaf migrants

There is a lack of data about deaf migrants in the UK. They face a unique set of challenges in accessing health and social care, compounded by language barriers, cultural differences and a lack of tailored services that consider both their Deaf identity and migrant status.^{[footnote 432]}

Migrants and asylum seekers often experience long delays to home office applications due to a lack of sign language interpreter provisions or advocacy support.

Some will not have full mastery of BSL and will use a different signed language or international signs, which may be hard for BSL interpreters to translate, requiring relay or International Sign interpreters.

Information about entitlements and services is not provided in BSL or international sign formats.

Migrant services aimed at helping migrants to integrate can overlook the needs of deaf migrants, entrenching their isolation. For example, job training or social inclusion programmes may not provide sign language interpreters or be accessible to people who use BSL.

Hearing migrants and refugees are offered free classes to learn English, which they must complete to claim Universal Credit. Deaf people are discriminated against as a spoken language course is unsuitable, and they are not offered equivalent free courses to learn BSL, which means they cannot understand BSL interpreters to access public services. Many deaf migrants have experienced language deprivation in their home countries due to a lack of access to education or sign language, which means they do not arrive in the UK with a first language. This makes acquiring BSL more complex and highlights the need for tailored language learning support.

Dedicated language classes for deaf migrants to learn BSL or written English are only provided at City Lit in London. This geographic restriction places most deaf migrants at a disadvantage, despite the feasibility of delivering BSL courses online.

Deaf migrants often struggle to navigate and establish their entitlement to services. Advocacy services specifically for deaf migrants are required to help them navigate both healthcare and social systems and ensure they get the support they need.

There is no website or service for deaf migrants arriving in the UK. Many organisations obtain government grants to provide support, but a lack of co-ordination or service planning creates fragmented services, confusion and duplication of services.

There is a lack of tailored mental healthcare for deaf migrants, particularly asylum seekers and refugees, who have experienced trauma before arriving in the UK.

Although some social work and care teams have established processes for the provision of services to migrants, they lack guidance on how services might be tailored and the additional support and funding required.

LGBT+

LGBT+ people within the BSL community may have specific health and social care needs that are often overlooked.

There is double marginalisation caused by discrimination related to deafness and sexuality or gender identity, with impacts on mental health, social and family connections and access to services.

Services and BSL interpreters must be culturally sensitive to both deaf and LGBT+ considerations.

There is a lack of targeted NHS information in BSL for the LGBT+ community focused on issues relating to sexual health, mental health and support for people with their sexual or gender identity, and also issues that affect this community more, such as self-harm, weight management for the lesbian community, and safer drug and alcohol use. There a particular risks with a lack of targeted information relating to the gay chemsex scene, where drugs are used to engage in sex, but often in risky, unsafe environments.

BSL sexual health information is required to address topics such as safe sex, PrEP use (a prescription medicine to protect against HIV), HIV prevention and testing, sexually transmitted infection care, cervical and breast screening, sexual consent, chemsex awareness and harm reduction, gender-affirming healthcare (to support gender identity if it conflicts with sex at birth), reproduction, domestic abuse and sexual rights.

The lack of BSL information on gender-affirming care can make it more challenging for transgender deaf people to access the care they need.

Mental health professionals may not always understand the cultural nuances of being both deaf and LGBT+, which can affect the quality of care a person receives. It is vital to have therapists who are trained in both BSL culture and LGBT+ issues. In particular, counselling support is required for deaf people exploring their sexual and gender identity, for those who have recently come out, and for LGBT+ asylum seekers who may have higher levels of shame and vulnerability.

Recent UK data has indicated the greater mental health challenges faced by deaf LGBT+ youth in comparison with their heterosexual and cisgender peers.^{[footnote 433]}

It is essential to be sensitive to the needs and unique contributions of deaf LGBT+ parents who are seeking to foster or adopt, given the broader shortage of deaf foster carers and adopters in the UK.

There are unique challenges faced by deaf older LGBT+ adults in receiving social care that understands their identity and the impact of a lifetime of discrimination. There is an increasing demand for memory care services that ensure identity is respected in those with dementia.

BSL users with additional disabilities

Among people who are deaf from an early age, 30% to 40% have additional disabilities.^{[footnote 434]} The intersection of being deaf and having additional disabilities can create unique challenges for those who use BSL. This group often needs specialised health and social care services, but research, policy and practice often fail to address the specific needs of this group, resulting in gaps in services, support and accessibility. There are not enough organised BSL community resources, with no forums or infrastructure for the disabled deaf voice to be shared. This group is marginalised within our BSL communities. It was difficult to ensure they were represented during the consultation process for this report because of a lack of community organisation. Improved community infrastructure and inclusion of their voice within the work of deaf organisations is required to address this.

Question 11

9. Deafblind people’s access to health and social care

Accepted Answer

https://www.youtube.com/watch?v=5IFQkoAMmCg

9.1 Deafblind potential is not maximised due to unmet needs

Background

Over 450,000 people in the UK are deafblind with combined hearing and sight loss.^{[footnote 435]} The number who use BSL is not known due to limited data. The leading cause of deafblindness among BSL-users is Usher syndrome, which causes acquired sight loss in 3 to 6% of people who are born deaf. It affects up to 5,200 signers in the UK.^{[footnote 436]} This figure does not include other causes of deafblindness in BSL users, such as congenital syndromes, rubella, premature birth, and age-related eye conditions such as cataracts, glaucoma, diabetes and macular degeneration. Like the general population, 1 in 5 deaf signers aged over 70 years have significant sight loss and their numbers are increasing.^{[footnote 437]}

Policymakers and service providers often have preconceived ideas about what a deafblind person is capable of, often with negative views on their ability to work, quality of life or ability to make their own decisions.^{[footnote 438]} This unconscious bias and ableism has shaped policy and service responses to deafblind people and contributed to systemic benign neglect (a situation or population that has repeatedly overlooked, either out of hostility or through a passive disregard).^{[footnote 439]}^{[footnote 440]} There is a crisis, with under-provision for deafblind people by the state and charity sector. But with the right accommodations, rehabilitation and support, deafblind people can become fully self-actualised and contribute to society in many ways, including paid employment. The compounding impact of dual sensory loss often requires the support of skilled communication partners, interpreters, mobility guides, advocates and rehabilitation workers. But with the right support, deafblind people can carry out valuable roles within society, as students, employees, employers, innovators, artists, trainers, educators, volunteers, peer-supporters, parents and carers. The current lack of support and financial eligibility criteria creates dependency, stigma and isolation.^{[footnote 441]}^{[footnote 442]} This devaluation through inadequate support leads to a cycle of marginalisation. Crucially, this means that society misses out on the valuable skills and innovation that tactile and deafblind people could contribute, including unique insights and approaches to problem-solving, which are missing from more visual or auditory-focused societal perspectives.^{[footnote 443]}

Deafblind people are systematically excluded from society^{[footnote 444]}

Deafblind people are at significant risk of severe isolation, financial deprivation and poor physical and mental health outcomes.^{[footnote 445]} They can become increasingly housebound, which has a detrimental impact on their physical and mental health, and wellbeing, resulting in a reduced ability to participate in employment, community life and education. Deafblind people experience higher levels of loneliness, depression and anxiety.^{[footnote 446]}^{[footnote 447]}^{[footnote 448]}^{[footnote 449]}^{[footnote 450]} For many, there are spiralling physical health and mental health needs, which are made worse by a lack of BSL interpreters. Deafblind people often experience prolonged inpatient stays because suitable care placements cannot be found. Mental health admissions of more than a year are common.^{[footnote 451]} Two case studies provided by Deafblind UK show how unmet needs escalate, resulting in greater long-term costs to service providers (Annex 4).

There is evidence that deafblind people who receive higher levels of support, including from the social care system, have better physical and mental health.^{[footnote 452]}^{[footnote 453]} But social care support is not consistent or universally provided to deafblind signers across the UK, with serious impact on the realisation of their human rights, and ability to access the NHS and public services.^{[footnote 454]}

Deafblind BSL signers are profoundly isolated

Deafblind people often have very limited access to information and health knowledge that the general population takes for granted.^{[footnote 455]} For some, adapted forms of BSL, such as tracking, visual frame and tactile BSL (described in sections 14 to 17), are the only channel for receiving information because they cannot access speech (due to lack of hearing), VRS and BSL videos and websites (difficult to access with low vision), written English (due to poor sight or English literacy) and braille (due to lack of suitable training). This group is wholly reliant on tactile BSL interpreters and BSL competent communicator guides to access services and information about the world. There are severe national shortages of qualified professionals. There are currently only 8 deafblind interpreters on the National Registers of Communication Professionals (NRCPD) in the UK. Formal qualifications in tactile BSL interpreting have only recently been developed and are not currently available, so new interpreters cannot join the register.

Lived experiences

It was 2 whole weeks before I knew about the COVID-19 lockdown. My communicator-guide popped round and he just told me quickly that he could not visit and told me just to stay at home because it was dangerous. I did not know why. I did not have enough food and could not buy more. I was panicking about what was going on. Finally, he came around 2 weeks later and explained to me about COVID and the lockdown using hands-on BSL. Then he was able to translate all the messages on my mobile to me and help me contact my family. It was a big shock to realise I was the last person to know about Covid.

(Deafblind person, translated from BSL)

It is almost impossible to get a tactile interpreter. Sometimes a regular interpreter will turn up and then they will leave when they see I need hands-on. It’s also hard to arrange a communicator-guide to get me to the doctor in the first place. I can’t book my own appointments because the receptionist insists I must use the e-consult system. I’m stuck because I can’t see the screen and I can’t use the phone. Deafblind people must try not to be ill.

(Deafblind person, translated from BSL)

I regularly work with deafblind patients who when they meet me, almost cry in relief as their appointment has been postponed 2, 3 or 4 times because there was no interpreter, and they are in pain, or losing whatever residual sight they still have. On one occasion, the patient was told his sight could have been saved if he had been seen earlier. Another wasn’t discharged from hospital for 3 extra days because a hands-on interpreter could not be found.

(Tactile BSL interpreter, written English)

I had no way of explaining to my deafblind client about her breast tumour surgery without touching her own breasts, so I grabbed some damp tissues and made a 3D ball so I could use it to explain. Tactile models for healthcare should be made available.

(Tactile ASL interpreter, social media video)

9.2 Barriers and gaps in care for deafblind people

Definition of deafblindness

There is no universally recognised or consistent definition of deafblindness in law across the UK. This has led to a lack of awareness of the condition and fractured provision across the nations. Deafblindness is a distinct disability and is more than the sum of deafness and blindness, because combined hearing and sight impairment makes it harder for impaired senses to compensate for each other.^{[footnote 456]}

This has an effect on how a person accesses information, communicates and navigates their environment. Deafblindness requires specialist assessment, service provision and research unique to this condition. Usually, service providers address either deafness or blindness, leading to ineffective assessment and provision for those with dual sensory loss.

In England, there is a legal functional definition of deafblindness included in the Care and Support (Assessment) Regulations 2014 (section 6, 3), which accompanies the Care Act 2014. This states that persons are deafblind, “if the individual has combined sight and hearing impairment which causes difficulties with communication, access to information and mobility”.^{[footnote 457]} There is a statutory duty to: “identify, assess, and support deafblind people, ensuring they receive specialist assessments, appropriate services and accessible information”. This is a functional definition. The Nordic definition is broader, more person-centred and more internationally aligned.^{[footnote 458]} There is no legal definition in Wales, but local authorities are expected to work to the functional definition used in England (Social Services and Well-being (Wales) Act 2014).^{[footnote 459]} In Scotland there is no legal definition of deafblindness as a unique condition and no register of deafblind people. Stakeholders in Scotland want the Scottish Parliament to adopt the Nordic definition and are exploring workforce development and a national commissioning model for deafblind services in the proposed Scottish Government National Care Service.

Lack of data and research

The requirement on local authorities in England to keep a record of deafblind people living in their areas is inconsistently applied and retrieving data is difficult. Only half of English councils meet the legal requirement to identify and keep records.^{[footnote 460]} Deafblind BSL users are often invisible within data and research.^{[footnote 461]} Research mainly focuses on medical aspects and there is little published on the psychosocial impact of deafblindness. There is a lack of published research on tactile BSL. Without data, service development is hindered.

Improving deafblind BSL communication

Deafblind people may use adapted forms of visual BSL, which include visual frame signing. This is where someone using BSL will sign within the restricted visual field of the person so that they can see it. Tracking where they touch the person’s arm as they sign to enable them to track signing using their residual vision. They also use tactile BSL, also known as ‘hands-on’ BSL. This is where a person places their hands over the hands of the signer so they can feel the signs used. Some deafblind people use the deafblind manual alphabet (a tactile form of fingerspelling) or social haptic communication (relating to a sense of touch), where tactile gestures are made on the body. Social haptic is a communication system rather than a full language. There is no widely available training provided to deafblind people to learn these ways of communication and most deaf people who lose their sight have to learn to adapt by themselves or may not adapt at all, leaving them isolated.

Tactile sign language

Tactile forms of BSL are based on visual BSL but some of the grammatical features of visual BSL, such as facial expression and location in the signing space, are not well-suited to communicating through touch. So, understanding involves guesswork and can lead to frustrating communication experiences for both parties, with the deafblind person experiencing misunderstandings, missed nuances and information, and so disempowerment. These challenges mean that tactile BSL is slower and requires more time to ensure effective communication. Effective tactile BSL communication and trust in the communication partnership take a long time to build. This is why many deafblind people have preferred interpreters or communicator guides whom they understand better than others.

In the USA, a Deafblind-led movement has seen the recent emergence of new forms of tactile sign language where deafblind people have come together for work and socialisation.^{[footnote 462]} Pro-Tactile American Sign Language, known as Protactile, is a completely tactile language, in which grammar, concepts and emotional expression are conveyed entirely through touch.^{[footnote 463]} It is a faster and more efficient way of communicating in a tactile way. It uses communication backchanneling, by tapping on your partner’s arm, leg or foot, to feedback naturally about what has been understood and to share emotional responses to what is said.^{[footnote 464]} This is something that is missing from tactile BSL, making interactions awkward, as people are not sure what has been understood and turn taking can be slow and unnatural.

In the UK, deafblind people are held back because an equivalent to Protactile is yet to emerge. This hinders social participation and more effective communication with healthcare and public services. There are geo-sociopolitical reasons for this. One reason is that deafblind people do not receive enough individual support from the social care system to get together for long enough for Protactile forms to evolve naturally or for Protactile training programmes to be undertaken. Personal budgets or direct payments are often insufficient to allow people to travel outside of their immediate geographical areas to meet other tactile BSL users. Instead, deafblind BSL users remain socially isolated, often restricted to their home and unable to get around safely. There can also be social stigma about using tactile forms of BSL (such as embarrassment about touching others), which means that deafblind people are reluctant to use it as they start to lose their sight. There is a gap in research about effective communication, social care and employment support, which would bring deafblind people together to allow deafblind forms of BSL to evolve. It also gives opportunities for peer-to-peer support and shared problem-solving, which results in innovation. Such peer support could lead to a healthier cohort of people who can better contribute to society and have a greater chance of reaching their potential.

Deafblind children

More than 4,000 children in the UK are deafblind and need additional and specialist communication support, which is mainly delivered through health and social care services.^{[footnote 465]} The needs of deafblind children (often termed as having ‘multisensory impairment’, or MSI) are poorly understood and poorly served, and are not well-specified in data, research or practice.^{[footnote 466]} There are 5,366 school-aged children in England with dual sensory loss – of these, 4,795 are in mainstream schools. There are many barriers to deafblind children’s academic and social success.^{[footnote 467]} Too often a deafblind child’s needs are defined by local resources and budgets, and the signing skills of available personnel, rather than how their true learning potential can be met. Pathways for identifying deafblindness in children through health, social care and education are unclear, and specialist emotional and psychological support is rarely commissioned. There is little data about the number of deafblind children who need sign language or one-to-one intervenor support (to help them gather information from their environment, develop and use communication skills, and establish relationships). Every deafblind person needs it in some form.

There is a huge variation in support across the UK. Local authority children’s services are inconsistent and limited with varying eligibility criteria.

Many families miss out on vital support despite statutory guidance linked to the Care Act 2014 and specification in the care and support for deafblind children and adults policy guidance (2014).^{[footnote 468]} Transitioning from child to adult social care services is poorly supported. There is a shortage of MSI teachers and intervenors, with half of local authorities not employing any MSI teachers at all and not recognising the vital role they play.^{[footnote 469]}

Deafblind children are at high risk of language deprivation

Children with dual sensory loss are at high risk of language deprivation.^{[footnote 470]}

Deaf children with poor vision may not receive tailored BSL teaching or have the necessary tactile BSL input to develop language. Often adults employed to work with them have rudimentary signing skills. Some children will require intervenor support with intense scaffolding of language development, mainly through their sense of touch. Tactile forms of BSL, particularly Protactile sign language, are suitable ways to develop language in deafblind children. But if intervenors and family members are not fluent signers, it is difficult for deafblind children to develop much language at all, with an adverse impact on cognitive development. In the USA, deafblind adults are teaching deafblind children using Protactile to provide a rich, fluent, immersive language that meets their language learning needs.^{[footnote 471]} Here in the UK, too often, BSL-proficient deafblind and deaf adults are overlooked as a skilled resource for teaching deafblind children. This urgently needs to change.

Myths about BSL being unsuitable for deafblind children

Professionals misadvise some families to focus only on auditory technology and spoken language because of a concern that deaf children with worsening sight, such as those with Usher syndrome, will not be able to see BSL in the future. This is the wrong advice. BSL provides another lifeline for deafblind adults as they become more tactile people, enabling them to use communication support services. Children should be encouraged to learn visual BSL so that they have options for using a rich, tactile language when their sight worsens and they can benefit from BSL community membership and identity if they wish to as adults. By contrast, there is no tactile form of speech, and even with technology, listening without sight is difficult. Every sense must be maximised for deafblind children and they should have multimodal access to both speech and sign (both visual and tactile) from the beginning. This will give them every option at their disposal for living well as deafblind adults. Those losing their sight should learn BSL as early as possible because visual BSL becomes harder to learn as sight diminishes. Those already fluent in BSL find the transition to tactile BSL much easier.

9.3 Poor access to the NHS

Deafblind people face extensive barriers to accessing NHS services. Current systems are unequipped to address dual sensory needs. Ineffective accessibility solutions are offered that are only suitable for people with single sensory loss.

E-consultations are frequently offered by phone, video or platforms that are inaccessible to deafblind users.^{[footnote 472]} There is poor awareness among healthcare providers of deafblind people’s specific needs and how the AIS can be applied, so they experience even greater barriers to access. Patients often miss appointments due to the unsuitable communication methods used, rather than through non-compliance. Follow-up is rare and alternative methods are not made available.

Interpreters for deafblind people should be provided by the NHS, but communicator guides are also required to help a deafblind person get to appointments, to relay written NHS information into tactile BSL or make digital bookings. Communicator guides are usually provided through the social care system, but only some deafblind people are financially eligible for publicly funded support. Even when in place, direct payment rates are often insufficient to secure specialist human assistance to fully access the NHS for functions such as navigating digital systems, booking appointments, collecting prescriptions, and accessing walk-in and emergency appointments. Social care support is means-tested and some deafblind people are required to pay (in part or in full) for their own AIS support to access healthcare. There is a serious gap in NHS provision. Deafblind people have to pay out of pocket to access the NHS or go without essential care.

A main issue lies in the rigid use of contracted interpreting agencies. The NHS often contracts spoken language interpreter agencies, who are unfamiliar with tactile BSL or the specific needs of deafblind people, resulting in the provision of a poor-quality service. Most NHS staff do not know about the existence of tactile BSL, Protactile or visual-frame BSL, so they do not know what to request when booking interpreters and communication support. The terminology is confusing for healthcare practitioners and they often request interpreters who can use deafblind manual (a form of fingerspelling) when the person actually needs tactile (‘hands on’) BSL. Spoken language interpreter agencies often lack interpreters with the specialist skills required for deafblind communication, do not prioritise quality deafblind provision, and do not allow the booking of preferred interpreters through subcontractors. When patients ask to use alternative agencies with more suitable specialist deafblind interpreters, their requests are denied or delayed. This forces deafblind people to navigate complex bureaucracies just to secure the basic communication access they are legally entitled to. This all results in fatigue, frustration, healthcare failures, learned passivity and disengagement from care.

Good practice

Moorfields Eye Hospital in London has commissioned a deafblind specialist agency to provide interpreters for deafblind people, providing a tailored service rather than a non-specialist agency. This has received positive feedback from deafblind patients.

Dangerous and traumatic inpatient care

Deafblind people who are admitted to hospital are made situationally vulnerable by neglect of their communication and care needs while they are inpatients.^{[footnote 473]} Without suitable communication and guiding support, they are at risk of serious medical neglect and human rights failures as they may not be able to consent to treatment, communicate pain, or be aware that food and drink have been served.^{[footnote 474]}^{[footnote 475]}

Lived experience

I didn’t know who was around me. They just kept grabbing me. They didn’t know how to tell me what was going on. It was terrifying!

(Deafblind NHS inpatient)

In England, deafblind adults are legally entitled to a specialist assessment by a qualified practitioner from their local authority.^{[footnote 476]} In Wales, there is a mix of statutory and non-statutory guidance, which is not legally enforceable. In Scotland, there is no legal requirement. Even where legally required, the provision of specialist assessment is not consistently adhered to, with long waiting lists, and deafblind people reporting that they are turned away.^{[footnote 477]} A major problem is that many councils do not have a workforce with the required deafblind assessment skills and qualifications. The closure of specialist sensory teams exacerbated the lack of qualified assessors and knowledge of how to provide the services required by law.^{[footnote 478]} Assessments can be outsourced to deafblind organisations when in-house provision is not available, but local authorities do not always do this.^{[footnote 479]}

The provision for initial assessment of deafblind children falls under the Children Act 1989 (section 17) which outlines provision of assessment of children in need by a social worker, with statutory guidance emphasising that subsequent assessments must be carried out by a specifically trained person or team equipped to assess the needs of a deafblind child in terms of mobility, assistive technology and habilitation equipment. This includes the assessment of special educational needs, which falls under the Children and Families Act 2014. Concerns about insufficient specialist social workers for initial assessments and widespread failure to identify deaf children in need also apply to deafblind children.

Lack of suitable provision once needs are identified

Once needs are assessed, and often deafblind people do not get this far, there is a lack of specialist provision. There is a lack of deafblind interpreters, communicator guides or trained support workers, and no dedicated rehabilitation services for deafblind people. Pressure on social care budgets means that often only those with the highest support needs are getting any help. Care provision can also be compounded by local authorities not always upholding the specialist assessment recommendations: a care and support package is not put in place, or negotiated with compromises made. The result is that deafblind people in the UK are not getting the specialist support they need to stay healthy, independent and employed.

Inaccessible processes

Deafblind people face major barriers in accessing social care, not just due to limited provision but also because the systems in place were not co-designed with them in mind. Many digital platforms used for financial assessments, personal budgets and direct payments are inaccessible – requiring visual navigation, document uploads and receipt tracking, which are often impossible without sighted assistance. These systems create significant stress and anxiety for deafblind users and undermine their autonomy.

Lack of universal provision

Support from local authorities is means-tested, but the rules around financial eligibility are complex, inconsistently applied and poorly explained. Deafblind people frequently report confusion about whether they qualify for publicly funded care, especially as criteria vary across regions.

Even those with eligible needs often opt out of assessments or support planning altogether – not because they do not want help, but because the process itself is inaccessible and overwhelming. As a result, many deafblind people are isolated at home with unmet needs, unable to access the support they are legally entitled to.

Lack of universal support means that working-age deafblind people, who have paid taxes and expect support when their dual sensory loss progresses, are often surprised to learn that their financial resources are above the threshold for publicly funded care and support. Those who are not eligible for Care Act personal budgets incur full cost for their care (whether or not arranged by the local authority), potentially for the rest of their lives. They face huge outlay in hiring communicator guides at a time of their lives when their working-age peers do not usually have to pay for care, and they often have dependents.

9.4 Barriers to employment for deafblind people

The current structure of the social care system creates significant disincentives for deafblind people to remain in work or start employment. They are often faced with difficult choices about whether to:

try to remain in work but become otherwise restricted to the home environment or pay unaffordable costs for basic support in their personal lives, due to a lack of publicly funded social care support
give up work and run down their savings and assets until they qualify for publicly funded social care

Without adequate social care, people struggle to work and then become unable to work due to stress or poor physical or mental health, with escalating costs to the state.

The current social care system is not designed for deafblind people to receive the care they need in their personal lives, so they can also access the labour market. For example, they may get support at work via the AtW scheme but find it impossible to go shopping for clothes to wear to work without paying large sums of money for a communicator guide. The stress and financial outlay mean that many deafblind people of working age who wish to work do not, because, on balance, working may not be sustainable without better disability support. This discourages deafblind people from remaining in work or from becoming economically active citizens in the first place.

All deafblind adults must receive non-means-tested social care support to remove barriers to employment, including enabling deafblind people to work in the vital training and leadership roles needed to improve deafblind provision across the UK. This should include support for daily life activities that are necessary for employment readiness and stability – not just support during working hours. Too many deafblind people who want to work are stuck in a loop of worklessness and dependency because of how the system is structured. There are also no specialist vocational rehabilitation services for deafblind people, leaving many unable to access tailored pathways back into employment.

Lived experiences

I was a skilled professional working for a charity but I had to give up work and go on benefits. It was the only way to get direct payments so I could get out of the house.

(Deafblind person, translated from BSL)

I worked all my life, paid tax and national insurance but cannot get direct payments cos my income is above the threshold, so if I want a hands-on interpreter or a communicator guide, I have to pay huge amounts myself. This costs a lot more than my Personal Independence Payment. Deafblind people who are not working and are on benefits get a budget to go anywhere, whereas I only go out if it’s critical. As of now, I’m housebound. I would go on outings or socials but it costs me over £100 each time I go out to meet friends, and often I can’t find anyone to take me. I daresay the taxes and national insurance I pay fund them when I can’t get that back for my own support.

(Deafblind person, written communication)

The situation in the UK contrasts with universal provision in other countries, such as the Netherlands, where deafblind adults are entitled to 168 hours a year of sign language interpreter support in their personal life, as well as guiding support. In Australia, all deafblind people are entitled to a minimum of 208 hours of interpreting and social support for guiding and communication needs.

Lack of qualified professionals for deafblind support

Deafblind BSL-using adults and children need appropriately qualified assessors, interpreters, intervenors and communicator guides who are highly fluent in visual and tactile forms of BSL, and may be hearing, deaf or deafblind themselves. Currently there are shortages, which are largely caused by a mismatch between the high levels of competency required and low pay. It takes around 7 years for non-signers to become fluent in BSL and train as a communicator guide but pay is often near the minimum wage. Qualifying courses are infrequently available. There is also underutilisation of the BSL community and deaf people as a resource for building professional capacity for deafblind communication, social care and navigation support. BSL users are much quicker to train as they already have BSL fluency. Other barriers include issues with interpreter registration because qualifying courses are no longer run, and legacy qualifications are not always recognised. Some courses, for example, the Level 2 Award in Communicating with Deafblind People, have clear speech as a prerequisite. But this is a barrier to many deaf people training to work with deafblind people, and potentially contravenes the Equality Act 2010, which has limited the building of a skilled workforce.^{[footnote 480]}

Lack of deafblind enablement services and specialist rehabilitation

There are huge physical and emotional challenges of living with deafblindness, with constant adaptation, learning, life and emotional adjustment – the mental load is exhausting. Nordic models of provision focus on the importance of rehabilitation and adjustment.^{[footnote 481]} Local authorities in England are required to provide some rehabilitation, such as reablement services (promoting independence after health deterioration), mobility training or equipment, but this is usually not done by deafblind specialist workers. For example, mobility training is often provided by a vision rehabilitation specialist, but they may lack a specialist understanding of deafblindness. They cannot communicate directly with a deafblind BSL user without interpreter support or offer tailored deafblind solutions. Specialist deafblind vision rehabilitation with BSL skills is desperately needed. Local authorities in England must provide or arrange for the provision of services that prevent, reduce or delay needs for care and support (part 1, point 2, Care Act 2014). This means that (re)habilitation must be provided, but currently deafblind BSL users often receive no tailored support at all. Ultimately, the measure of success is that deafblind people can:

live independently
stay physically and mentally healthy and recover quickly from illness
exercise control over their life and the lives of family members
sustain a family unit which avoids children taking on caring roles
participate as active and equal citizens, both economically and socially
have the best possible quality of life irrespective of illness or disability
retain maximum dignity and respect (Care Act, statutory guidance)^{[footnote 482]}

Very few local authorities have specialists who can meet a deafblind person’s complex needs, particularly BSL users for whom there is also a language barrier with their trainer. Local authorities often need to commission specialist services, but there are few services available or insufficient expertise to identify appropriate services. There is currently no centre of excellence for deafblind rehabilitation in the UK, which provides such services to local authorities, although this provision is essential.

9.5 Care homes

There are very few care homes where staff are proficient in BSL and deafblind communication and cultural competence. A small, geographically dispersed deafblind BSL population needs commissioning of specialist services, which may be out of area or locally integrated with the provision for deaf BSL users. Inappropriate residential placement of deafblind adults in mainstream care homes, or placement in residential care at an earlier age because it is easier to organise, can have significant detrimental effects on deafblind people’s health and wellbeing.

Mental health and psychological support

In England and Scotland, the mental health services for deaf BSL users are often not commissioned to provide specialist deafblind mental healthcare and staff are not routinely trained in tactile BSL or deafblind communication, and there are none in Wales. While deafblind BSL users do use mental health services designed for deaf people, there are no designated deafblind leads within these services. Better pathways, commissioning and training are required to meet their specific needs, particularly for those who require tactile BSL or emotional adjustment to dual sensory loss.

Safeguarding and complaints

Deafblind people are considered vulnerable, although the Care Act 2014 does not legally define them as such.^{[footnote 483]}^{[footnote 484]} Yet, loopholes in the act allow unregulated workers to work with deafblind adults as communicator guides because disclosure and barring service checks are only required in law if they provide intimate personal care. Communicator guides are unregulated and there is no register despite the high levels of skill and BSL fluency needed to safely and competently support a deafblind person’s communication, mobility and environmental awareness. Within deafblind communities, there are many examples of financial, sexual and physical abuse going unreported because of the lack of regulation. A deafblind person may lack knowledge or access to make a complaint or raise concerns, without the assistance of the person who may be the abuser. They may not realise that they are being abused or worry about support being withdrawn in an extremely small community where confidentiality is paramount. We have identified serious safeguarding concerns where many deafblind people have absolutely no accessible way of making NHS or social care complaints, flagging abuse, seeking a referral to safeguarding teams, or reporting the professionals that support them to a regulatory body. This urgently needs addressing at a national level. The same concerns about accessible safeguarding channels apply to deafblind children, who are particularly vulnerable to abuse.

Lived experience

I realised my communicator-guide was slipping her own groceries among my pile of shopping at the till. It’s the cunning that is despicable. Another, male guide’s hands lingered in [the] wrong places and I could not do anything. It is difficult to know where to draw a line as we rely on touch to communicate, putting us into vulnerable situations.

(Deafblind person, written communication)

Question 12

10. Our recommendations

Accepted Answer

https://www.youtube.com/watch?v=YFcQ8DzfHhM

This section outlines a comprehensive roadmap for action with:

12 priority actions for the greatest impact on fiscal savings and reducing inequalities
18 areas for action with detailed recommendations
14 urgent improvements relating to deafblind people

12 priorities for action

Impact and savings

BSL users must be able to begin booking requests for interpreters and receive confirmation of bookings via a dedicated app or website.

The NHS should use the NHS App or equivalents in Wales and Scotland to allow patients (and parents, carers or appointees) to book appointments, book and confirm BSL interpreters, manage and state their access needs and set up a patient passport to be shared across NHS Trusts and GP surgeries.

Systems must enable BSL users to specify their preferred communication needs (including deafblind BSL needs), their preferred interpreters, whether they need a male or female interpreter and if they want face-to-face or remote support.

The confirmation message must include the name of the interpreter so that service users can check the professional register to be reassured they are qualified and there are no conflicts of interest.

The booking system must have inbuilt flexibility so that service providers can make bookings and arrange for the interpreter to be present for pre- and post-consultation briefings.

There needs to be support for people who are digitally excluded, who cannot make a request or who require an additional intralingual relay interpreter or deafblind support.

Cancelled or postponed appointments should trigger an automatic cancellation or rebooking of the interpreter.

Deaf and deafblind BSL users must be involved in the design of booking systems.

These improvements will enhance trust, reduce appointment failures, reduce stress and uphold duties under the Equality Act.

Bring section 95 of the 2022 Health and Care Act into force to strengthen enforcement of the AIS. Greater clarity is required on which body is responsible for enforcement, in particular, the regulatory role of the CQC, and the CQC inspection frameworks, which must specifically include the AIS.

The Secretary of State must require providers to publish their self-assessment frameworks, and for NHS Digital to publish usable data for public scrutiny and research.

The rollout of electronic patient records must include a flag to alert staff through prominent notification of AIS communication needs.

AIS adjustments and BSL interpreters must be provided for parents and carers attending appointments with a hearing loved one, for communicating with ward staff or attending carer support groups, with functionality for this within booking systems and the NHS App.

All NHS and private sector providers should be required to show evidence of compliance with AIS and the Equality Act within tendering, contracts and service-level agreements.

GP and appointment booking and cancellation systems must be audited to ensure alternatives are offered to the phone to provide equitable access to appointments.

3. Establish national video relay services (VRS) for England and Wales with 24/7 access

BSL users should be able to call anyone in the UK with a dedicated provision for health-related interpreting and emergency calls. This service must include document and letter translation and literacy support. This allows BSL users to manage appointments and join remote NHS and social care e-consultations, which is currently not possible.

Service contracts should enable Welsh and other regional callers to specify a preference for VRS interpreters who are familiar with local names, signs and spellings, or the Welsh language.

This includes self-referral systems for primary care, social work and social care.

The needs of BSL users must be outlined in the government’s digital inclusion strategy.

Deaf and deafblind people must be involved in the design of digital solutions.

All digital platforms should be compliant with the AIS. Accessibility requirements must be built into tendering, contracts and service-level agreements. This includes accessible websites, apps with BSL-interpreter integration and accessible remote consulting tools, which allow automatic captioning and a BSL interpreter to join videocalls.

Every service must provide responsive two-way alternatives to phone bookings to manage appointments (email, text number, VRS).

Telephone systems must be compatible with the phone numbers used by text relay and VRS services so that staff can make relay calls and not only receive them.

All public sector correspondence to deaf and deafblind people should have a QR code to obtain VRS translation into BSL.

Devices to use VRS should be available onsite at hospitals and medical centres, with guidance for staff on how to use it.

Portable VRS devices should be suitable for use from hospital beds, with round-the-clock VRS access.

Posters with QR codes for quick access to VRS should be above or near hospital beds, at reception desks and within public sector buildings.

High-speed wifi access across all NHS and local authority estates is essential for smooth VRS access.

Contractual requirements must require AIS and accessibility functionality in IT systems and e-consult platforms, to ensure needs are flagged and so interpreters can join calls.

Contracts must specify technical solutions so people can receive remote third-party assistance with filling in forms for e-appointments and e-triage systems.

All booking apps and systems must be accessible for deaf and deafblind people with large print, high contrast, transcripts, and compatibility with braille readers.

5. Mandate the collection of patient data about BSL as a primary language and disability status

This enables quality research on BSL users’ needs and outcomes within health and social care systems, so that inequalities can be addressed.

Health and social care systems must routinely collect and store data on BSL usage and deaf or deafblind disability status, alongside other demographic data such as age, sex and ethnicity. Better quality data will remove barriers to secondary data analysis.

The NHS App or equivalent apps must allow BSL users to self-register their use of BSL and consent to health research.

Data collection and storage should be built into commissioning contracts.

Epidemiological studies such as the Health Survey for England should include data from BSL users and sample boosts, where recruitment targets BSL users. This will improve data quality and analysis on health outcomes for this population.

6. Establish a dedicated national BSL complaints service

Each UK nation should commission a dedicated national BSL complaints service run by a health or a social care-affiliated deaf organisation.

Trained BSL liaison workers should take complaints via video call or video message, or alternative communication methods, and then work with the local complaints team or interpreting agency.

Robust complaints data must be collected and published annually to identify systemic barriers and improve user experience. Centralisation of complaints from BSL users will provide rich national data on accessibility friction points, learning opportunities and evidence about the systemic improvements required to save money and improve service users’ experiences.

Commissioning contracts for a national BSL complaints service must require an annual review of detailed data about the type of complaint and identified service failures. Analysis by data experts must inform improvements and a national strategy for more equitable and responsive services.

Contracts must specify that deafblind tactile BSL users should receive a home visit to help them make a complaint.

Contracted organisations should be tasked with equipping local complaints and patient liaison teams with the awareness, knowledge and skills to understand the deaf or deafblind complaints context, the historical experience of cumulative oppression, and a trauma-informed approach to understanding their experiences of access failures.

New processes should make it easier for BSL users to report access issues via booking apps or easy-to-use template forms to help write complaints.

Local complaints processes should always provide alternative contact methods to the telephone (email, text number, VRS).

Longer-term savings through impact on health inequalities

This includes all frontline staff, receptionists, porters, administrators, managers and commissioners. Section 181 of the Health and Care Act 2022 requires mandatory training on autism and learning disabilities. There needs to be a similar requirement for sensory disabilities including deafness, deafblindness and BSL awareness.

Core training should cover deaf and deafblind awareness, BSL awareness, Deaf culture, how to communicate effectively, how to book and work with BSL interpreters, and how to use VRS.

Allied professionals, including social workers and healthcare providers, require specific training on how to work effectively with interpreters to achieve the best outcomes for deaf and deafblind people. For example, practitioners must understand communication norms, the impact of not considering culture, and how using interpreters affects the effectiveness of assessment and service delivery within their discipline.

The professional bodies representing health and social care professions should ensure that AIS, Deaf and Deafblind culture, BSL and interpreter awareness training are included in qualifying training courses via universities and continuing professional development.

Additional training courses should provide BSL tuition to all staff who routinely interact with deaf service users, such as receptionists, porters and audiologists.

Basic staff awareness should include removing facemasks, not turning off lighting without considering the impact on communication, not moving deafblind mobility aids without asking, and not sitting in front of a window for all deaf people, but especially for deafblind people who may not cope with glare.

In consultation and waiting rooms, seating should be arranged to be optimal for BSL (seated opposite), visual-frame BSL (seated opposite at a longer distance), or tactile BSL communication (seated next to or in front to allow for hand-over-hand contact).

8. Publish statutory guidelines for BSL-interpreter provision

Guidance must state that NRCPD-registered, qualified BSL interpreters must always be provided.^{[footnote 485]}

Family members, friends and children must not be used to translate and interpret.

Registered, qualified interpreters should routinely attend appointments in person, with VRS and VRI (video remote interpreting) only used for emergency or walk-in care, for online appointments, or in situations where personal choice to request VRS is appropriate.

VRS should not be the default solution to save money at the expense of quality of care. Some deafblind users will always require in-person interpretation, especially if they need hand-over-hand translations using tactile BSL.

Guidance must say what type of interpreting provision is suitable in different situations, including standard BSL interpreters, interpreters for deafblind people or deaf relay and intralingual interpreting when a deaf person’s language, modality or cultural needs differ from standard interpreting. This ensures full and accurate communication.

In-person interpretation is more effective for planned appointments, planned procedures and surgery, and managing interactions in waiting rooms.

In-person interpretation is essential when patients are bedridden, in pain or receiving end-of-life care or maternity care, including during labour.

At short notice, VRS is often the most effective option for emergencies, crisis support, urgent care, walk-in or out-of-hours services, planned remote consultations, communicating with pharmacies, and contacting services to manage appointments.

VRS is a supplement, not a replacement for in-person interpreting, as video is often not suitable. Contracts must reflect these expectations and interpreter agencies must work to the new standards.

Within public services, there must be a formal policy that places responsibility on health and social care providers to:

confirm interpreter bookings in advance directly with the patient, ideally using accessible technology (for example, NHS App)
immediately rebook appointments where communication support fails, with timeframes equivalent to clinical cancellations (within 14 days)
log and report failed interpreter bookings, with a clear escalation route when access has not been provided
follow-up on interpreter cancellations. If an interpreter cancels, it must be the provider’s duty to rebook, not the deaf patient’s responsibility to chase

9. Direct commissioners to prioritise and engage the BSL community as a vital resource within commissioned services

BSL healthcare services should be commissioned on a national or regional basis rather than locally, as neighbourhood strategies will not meet the needs of the geographically dispersed BSL community.

Commissioners must recognise that people fluent in BSL are an essential resource in the planning and delivery of health and social care to match needs, and that other service providers often do not have the skills or fluency required.

Increase the quality of BSL interpreting provision for deaf and deafblind people by contracting community-based interpreter agencies with staff who are familiar with the Deaf community and sign language interpreting community.

Increase the direct provision of health, social work and social care services in BSL (without the need for interpreters) by commissioning services delivered by professionals who are fluent in BSL.

Improved commissioner awareness and engagement with Deaf and Deafblind communities so they have a good understanding of needs and unique experiences. Guidance for commissioners must be developed.

There should be a shift within tendering and procurement processes to person-centred, ethically commissioned services provided by the BSL community for the BSL community. Co-design is essential, with greater flexibility in contract specifications and models of provision to meet diverse user needs and ensure service equality.

Commissioners should fund activities through community organisations and specialist BSL-interpreting agencies to meet the requirements of the Procurement Act 2023, to add social value and cohesion to the BSL community.

Commissioners must move away from the assumption that local provision with interpreters is always the most cost-effective form of care. For specialisms where it is difficult for clinicians to provide the same diagnosis, treatment and quality care, there should be commissioned BSL-led provision and specialist deaf pathways.

Direct BSL provision is essential for areas requiring specialist assessment of culture, cognition, language and behaviour. This includes social work, mental health, language therapy in BSL, pathways for neurology, dementia, stroke, brain injury, learning disability and neurodevelopmental conditions (such as ADHD, autism). Diagnostic and post-diagnostic support should be delivered in BSL.

BSL-led support services are warranted for specific health conditions.

Psycho-education for diabetes or epilepsy management would improve the cost-effectiveness of treatment and treatment compliance.

Online group provision should be commissioned for carer support groups and health promotion directly in BSL, including stopping smoking, weight management, antenatal and postnatal services, and breastfeeding classes.

Online personalised feedback from routine healthcare checks for people aged 40 years and over should be available via a BSL-fluent nurse.

Services should be commissioned on a national or regional basis rather than locally. Collaborative commissioning across regions or authorities is essential, with flexibility to allow out-of-area sensory service providers to establish social care services in new areas. They should operate as tertiary services (provided by specialised hospitals or clinics) or as hub-and-spoke, in-reach services and make optimal use of remote video consultations, with face-to-face appointments as necessary to ensure wide geographical reach and cost-effectiveness.

GP and self-referrals should be sufficient to avoid gatekeeping by non-signing local services, which creates unnecessary delay. Local services must remain engaged in partnership with specialist services. Choice is important as some people will prefer to access services locally with AIS provisions.

National strategies and planning are required to meet the needs of BSL users in each UK nation to avoid a postcode lottery of inconsistent care.

The development of BSL mental health services for adults and children in Scotland and Wales is an essential priority.

Commissioning for specialist services should specify a minimum level 3 BSL proficiency and support staff training in BSL in working toward this level.

A review of service-level agreements with interpreting providers is essential to ensure that interpreter provision reflects the clinical context, prioritises interpreter quality and choice, and considers where direct BSL provision would be more effective than working with interpreters.

Every local authority must establish and maintain specialist BSL-fluent social workers and specialist teams for deaf and deafblind people. This should cover adult and children’s services, who carry out case work and direct work, including statutory duties, but whose work also encompasses working alongside social work teams in other specialisms (for example, children and families teams), providing coworking, specialist input and advice.

These specialist social workers must be designated as lead practitioners and take overall strategic responsibility for deaf and deafblind services, with a named lead in each local authority. These professionals play a vital role in delivering safe, culturally competent, and linguistically appropriate support and safeguarding services. Their involvement is essential for the provision and co-ordination of BSL-specific services, including specialist BSL residential care, day services and community engagement.

11. Address language deprivation in deaf children through early years BSL provision and support for families, including free teaching to parents and carers

A national strategy is needed to prevent language deprivation in deaf and deafblind children. This strategy must begin at the point of deaf diagnosis, where families should be provided with clear, unbiased and affirmative information about deafness and deafblindness.

Families should be given immediate access to free BSL classes so it is introduced to all deaf children as standard.

A pathway of BSL support, along with audiological and spoken language support, must be mapped from the day of diagnosis to starting school.

Guidelines and preventive action must address systemic linguistic neglect and improve school readiness for deaf children.

A cross-departmental government plan is required to deliver this, led jointly by health, education and social care services, with ringfenced funding and clear lines of accountability. It must be made explicit which government department and senior responsible officer officially leads the strategy to ensure families receive consistent and sustained support.

Deaf early years language practitioners should deliver a nationally commissioned programme (or a specific legal requirement for delivery by each local authority or local authorities working in partnership), for families and infants to learn BSL up to a level that meets their needs. There also needs to be promotion of Deaf role models in early years, showing deaf and deafblind potential and high expectations.

At diagnosis

The National Institute for Health and Care Excellence (NICE) guidelines and training must be developed to guide clinicians (newborn screening, audiology) about important information to communicate to parents of newly diagnosed deaf babies and children.

Diagnosis must be made in a neutral manner using deaf affirmative terminology (‘deaf’ or ‘partially deaf’).

Families should receive an NHS leaflet based on the best evidence about the benefits of BSL at diagnosis for all deaf children, irrespective of the degree of hearing loss. Families should be signposted to support to learn BSL free of charge.

They should never be told not to use sign language, as this goes against scientific evidence about multimodal language learning and brain development in deaf children. The richer the bilingual language input, the better the language outcomes in both English and BSL.

Immediately after diagnosis

Every family and child must be offered free and immediate support to learn BSL to prevent language deprivation, reduce language delay, build communication resilience if technology fails, and mitigate future risks of isolation, poor mental wellbeing and dependence on the welfare state. This support should be provided at a level that meets the child’s language learning needs, in addition to hearing devices and optimising access to spoken language.

Additionally, all deaf babies and children must receive regular tailored BSL input from deaf language specialists from diagnosis for as long as required, so that they experience fluent adult language models.

A national early years BSL curriculum must be established that is family-orientated, tailored to parenting needs and the specific circumstances of each family.

Social communication strategies should also be taught, such as how to gain a deaf child’s attention, how to communicate when a child is in a pushchair, how to scaffold communication, and turn-taking games and visual nursery rhymes.

Pre-school years

Best Start in Life (formerly Sure Start) centres should offer mixed playgroups for hearing families with deaf children and families with deaf parents, with BSL interpreter provision.

Innovative play group schemes could help improve language deprivation in deaf children and loneliness in older deaf adults, many of whom are retired BSL teachers and a hidden resource. By matching suitable older people to teach BSL to families at playgroups or befriend families, and with the provision of mixed spaces for older adult and toddler groups to come together, we will reduce intergenerational loneliness and build community connection.

Local authorities must provide transport so that deaf pre-schoolers can attend specialist deaf nursery school provision, which may be out of area.

Support the routine involvement of social workers with families of deaf children in the early years, to fulfil the rights to assessment and support under the children-in-need provisions of the Children Act 1989.

There needs to be improved screening and early identification of deaf children with additional needs. They are at greater risk of language deprivation and worse outcomes from hearing technology and implantation. This should include those with difficulties affecting attention, social communication, language, central auditory processing and intellectual ability.

All deaf and deafblind children identified as at risk of language deprivation should receive additional speech and language therapy, including specialist BSL therapy.

Associated recommendations

Establish a sign language therapy profession with national standards, curriculum and training, to provide appropriate language and communication assessments, and tools and interventions for deaf children and adults with language deprivation or suspected sign language impairments.

Establish a national programme for deaf language therapy assistants working in tandem with language therapists in UK schools.

Speech and language therapy courses must make reasonable adjustments for deaf people and BSL users to train, with the development of deaf-specific and BSL-specific pathways for training that cover the range of speech, sign and language disorders, both developmental and acquired.

Improve BSL competencies of professionals working with deaf children: Dedicated funding for BSL learning to ensure all qualified teachers of the deaf and speech and language therapists specialising in working with deaf people are trained to BSL level 3 and working toward level 6, upskilling the current and future workforce.

Identify and remove barriers that prevent deaf people from entering the early years workforce, including the teaching and speech and language therapy professions.

Implement language deprivation pathways for young deaf adults to enable access through BSL to specialist education, advocacy, training, language therapy and mental health support, to smooth transition to adult employment and reduce long-term state involvement and escalation of need.

12. Develop a national strategy to increase the number of specialist BSL residential care homes, day care and in-home support to meet urgent care needs for older deaf people and older deafblind people

The government must recognise the current crisis in BSL care and the urgent need for more BSL specialist care and accessible provision in the UK.

There should be centralised commissioning of large regional BSL residential homes and supported-living schemes modelled on the Netherlands model, in partnership with deaf and deafblind organisations, recognising that deaf people are experts in their own needs and often prefer to receive care and support alongside other deaf people.

There needs to be regional collaboration between local authorities and housing teams to build both regional and local capacity according to population needs.

Commissioning of schemes should include specialist provision for older BSL users and those with complex needs, for example, those who have dementia, are deafblind or who are learning disabled.

A mixed model of provision is recommended with specialist BSL residential homes and accessible local provision. Choice is essential.

A nationally recognised BSL Care Quality Mark scheme should be established to improve BSL accessibility to mainstream residential care homes, with BSL teaching for staff and residents.^{[footnote 486]}

Urgent best practice guidance must be developed for social workers and mainstream care providers on how to meet the care needs of deaf and deafblind BSL users.

The use of BSL or tactile BSL in residential care must be seen as a core need and local authorities should be required to buy out-of-area provision if there is no BSL care provision locally.

Create an online directory or information-sharing hub so that social workers can quickly access information about beds available in BSL specialist or BSL-accessible care homes where staff can sign, or where there is another BSL-fluent resident.

Remove barriers to the establishment of specialist BSL care agencies and recruitment and retention of BSL care workers, including training and increasing pay scales commensurate with BSL skills and cultural competency.

Remove communication barriers with care inspectorates to make it easier for these agencies to become registered so they can offer personal care.

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Foreword

Executive summary

12 essential priorities for BSL users

For immediate NHS and social care savings

Longer-term savings through impact on health inequalities

Terminology

1. Introduction

1.1 The economic case for reducing the exclusion of BSL users from NHS and social services

Society is missing out

1.2 Lack of access causes cumulative trauma, poorer health and increased taxpayer costs

Systematic ableism harms people and society

Lived experiences

Poor communication and lack of control is causing trauma

Vicious circle of poor service access

Figure 1: Vicious circle caused by poor access to health and social care

Poor communication leads to exclusion

Telephone calls and voice messages are a consistent problem

Case study: Delayed diagnosis, delayed treatment and poor quality of care

Lack of trust

Avoidance of health and social care services

Lived experiences

2. Background

2.1 Intersectional needs – both disability and culture

2.2 Terminology within this report

2.3 Varying needs of BSL users

BSL-English interpreting

Dispersed population

Access burden and fatigue

Poorer health of BSL users

Poorer mental health

3. Specific challenges within each UK nation

3.1 Policy and legal contexts

England

Scotland

Wales

3.2 BSL service provision and challenges in each nation

England

Challenges in England

Scotland

Challenges in Scotland

Wales

Challenges in Wales[footnote 67][footnote 68]

Lived experience

4. Systemic challenges

4.1 Lack of data and research

BSL users are locked out of research participation and research careers

Issues with data recording

Lack of evidence

Good practice

Missed opportunities from previous reviews

4.2 Lack of access to information, advocacy, health prevention and promotion for BSL users

Health literacy gaps

COVID-19 pandemic

Good practice

Challenge of ensuring effective access to information

Adopting a principle of effective BSL access (delivered by deaf people for deaf people)

Advocacy

Case study: How advocacy provides health savings

Health prevention and promotion

Good practice

4.3 Lack of implementation of the Accessible Information Standards in England

Lack of AIS access for BSL users who are caring for others

Lived experiences

The Accessible Information Standards do not extend to the private sector

4.4. Systemic barriers to Accessible Information Standards implementation

Lack of expertise within care inspectorates

Lack of BSL complaints process

Good practice

Digital systems are unsuitable for AIS implementation

Digitisation of services creates new barriers

Poor awareness of AIS among service providers and users

Lack of mandatory staff training

Core skills training

Professional training

Good practice

Lack of standardised processes

Shortage of qualified BSL-English interpreters

Overreliance on interpreter agencies

Lack of shared information between services and agencies

Challenges in Wales^{[footnote 67]}^{[footnote 68]}

First responders – ambulance and paramedic teams^{[footnote 194]}^{[footnote 195]}

Vision services (ophthalmology, optometry, opticians)^{[footnote 221]}