Closed call for evidence

Acquired brain injury call for evidence

Published 14 March 2022

Executive summary

This call for evidence will inform the development of the government’s acquired brain injury strategy. Rather than a formal consultation on specific proposals, it constitutes a request for ideas on which we can build.

It will run for a period of 12 weeks and is open to everyone aged 16 and over. You can respond as an individual or on behalf of an organisation.

The easiest way to participate in the call for evidence is to complete the online survey.

An easy read version of the call for evidence is available.

The call for evidence closes at 11.45pm on 6 June 2022.

Joint foreword from the Minister of State for Care and Mental Health, Gillian Keegan, and the MP for Rhondda, Chris Bryant

We know that acquired brain injury (ABI) can have a devastating impact on an individual, with its impact felt across many aspects of their life. As well as the health impact, it affects family life, it can disrupt close relationships, it can make employment more difficult and it can severely damage an individual’s personal finances. Even minor head injuries can cause short-term impairment and repeated minor injuries can do long-lasting harm. Those living with more severe ABI are likely to have complex long-term problems affecting their cognitive and functional abilities, personality, close relationships and ability to return to an independent life.

Our ambition is to prevent brain injuries wherever possible and to achieve a step change in the care and support available to people living with an ABI, so that they have the chance to regain the fullest possible quality of life.

We know that many people living with complex long-term health conditions, such as an ABI, need support from a range of services. We are committed to supporting all people living with an ABI and we recognise that by working collaboratively and having a cross-departmental approach we can strengthen the support that people receive from statutory services.

We are pleased to launch this call for evidence so that we can hear first-hand from the people most affected by ABI, including individuals who have a brain injury and those close to them. We are also extending this opportunity to organisations, researchers and other professionals who can provide further valuable insight and who are often important advocates of the needs of this community. Your views and experiences will help us to ensure that we prioritise the actions needed and learn from examples of current and best practice.

We want you to tell us what support or services you would like to see improve, what is good already and what other information and support you would like to see made available. We would also like to hear whether you think that support or services for people living with ABI could also improve support for people living with other neurological conditions.

Gillian Keegan MP
Chris Bryant MP

Acquired brain injury strategy

An acquired brain injury is defined as a non-degenerative injury to the brain occurring since birth.  The term ‘acquired brain injury’ includes both traumatic and non-traumatic brain injuries. 

Traumatic brain injury (TBI) is an injury to the brain caused by a trauma to the head (head injury). There are many possible causes including:

• road traffic accidents
• assaults
• falls and accidents at home or at work

Non-traumatic brain injuries can be caused by a wide range of situations, such as:

• strokes and other vascular accidents, tumours
• infectious diseases
• hypoxia
• metabolic disorders (for example, liver and kidney diseases or diabetic coma)
• toxic products taken into the body through inhalation or ingestion

The government is committed to supporting all people living with an acquired brain injury and those living with other neurological conditions and seeks to prevent acquired brain injuries wherever possible.

On 2 December 2021 the government committed to publishing an acquired brain injury strategy.

The Department of Health and Social Care is leading cross-government work to develop the strategy. This call for evidence is asking stakeholders nationwide, including healthcare professionals, people living with an acquired brain injury, their families and carers, to put forward their views on what should be prioritised within the strategy.

Call for evidence

We know that many people living with an acquired brain injury need support from a range of services.

For this reason we are asking for your views on what the strategy should look to cover to better support people living with an acquired brain injury, including but not limited to health and social care, access to employment opportunities and benefits, and housing.

We want to hear your views on whether there are other related neurological conditions that should be considered as part of this strategy. There are existing work programmes for dementia, stroke, neurodiversity (including autism) and learning disabilities. To avoid duplication, these conditions will not be within the scope of this strategy. We will, however, continue to work closely with those developing policy in those areas to ensure alignment and identify areas of shared interest.

Given the potential overlap between the different nations and opportunity for areas of shared interest and learning, the call for evidence will be UK-wide and contributions will be considered appropriately.

Your experience of acquired brain injury

An acquired brain injury is an injury caused to the brain since birth. There are many possible causes, including a fall, a road accident, tumour and stroke.

Question

Have you ever had an acquired brain injury?

• Yes
• No
• Don’t know
• Prefer not to say

If you answered yes, what kind of acquired brain injury?

• Traumatic brain injury
• Mild head injury and concussion
• Brain aneurysm
• Brain haemorrhage
• Brain tumour
• Carbon monoxide poisoning
• Encephalitis
• Hydrocephalus
• Hypoxic and anoxic brain injury
• Meningitis
• Stroke
• Not sure
• Other (please specify)

At what age did you have your acquired brain injury?

• 15 or under
• 16 to 24
• 25 to 34
• 35 to 44
• 45 to 54
• 55 to 64
• 65 to 74
• 75 or above
• Prefer not to say

How did you acquire your brain injury?

Do you have care and support needs as a direct result of your acquired brain injury?

• Yes – I have care and support needs for more than 20 hours per week
• Yes – I have care and support needs for less than 20 hours per week
• No
• Don’t know
• Prefer not to say

Question

Do you have caring responsibilities for or support someone with an acquired brain injury?

• Yes
• No
• Don’t know
• Prefer not to say

Question

Do you consider yourself to have any other long-term health conditions?

• Yes
• No
• Don’t know
• Prefer not to say

If you answered yes, what kind of long-term health conditions?

Focus of the strategy

Question

Should the strategy also consider other neurological conditions alongside acquired brain injury?

• Yes – the strategy should cover acquired brain injury and other neurological conditions
• No – the strategy should focus exclusively on acquired brain injury

If you answered yes, which other neurological conditions could be included in the strategy?

• Cerebral palsy
• Epilepsy
• Motor neurone disease
• Multiple sclerosis
• Parkinson’s disease
• Not sure
• Other (please specify)
• None of the above

Why should the strategy cover both acquired brain injury and other neurological conditions?

If you answered no, why do you think the strategy should focus exclusively on acquired brain injury?

Scope of the strategy

We are interested in your views on the scope of the strategy and are considering a wide range of areas. You can select as many options as you like and will have an opportunity to select which are most important themes at the end of the survey.

Question

On which of the following areas could the strategy look to focus to better support people with an acquired brain injury or other neurological condition? You can choose more than one.

Awareness, identification and prevention

• Awareness of acquired brain injury for people working with at-risk groups
• Awareness of acquired brain injury in educational settings
• Knowledge and skills of staff working with at-risk groups
• Prevention
• Screening
• Wider public awareness

Healthcare

• Assessment and triage
• Choice and control over your healthcare
• Coordination of care
• Development of patient pathways
• Diagnosis
• Following existing best practice guidance
• Information about your condition
• Measuring patient outcomes
• Mental health
• Numbers of staff
• Rehabilitation (specialist inpatient and community-based)
• Training for specialist and non-specialist healthcare professionals
• Transition from children’s to adult care
• Treatment

Social care

• Accessible information, advice and advocacy
• Assessment of social care needs
• Coproduction of care and support plans with the person and their family and social network
• Financial support on offer including continuing healthcare
• Impact on unpaid carers and support for unpaid carers
• Integration of services
• Quality of care and support provided
• Social care workforce training
• Support to be involved in the community
• Support to live independently
• Support to live safely

Employment

• Disability-confident employers
• Job centre staff having awareness of your condition
• Occupational health
• Reasonable adjustments for appointments at job centres
• Support in accessing employment opportunities
• Support in leaving employment or retiring
• Support in the workplace for employers and employees

Benefits

• Access to support when going through the benefits process, including appointees
• Applying for benefits
• Awareness of the benefits system
• The appeals process
• The assessment process

Sport

• Concussion in sport
• Education on symptom recognition in sport
• Guidance on safer sport
• Sport-specific pathways and support

Housing

• Ability of housing to meet individual needs
• Accessing appropriate housing including assisted living
• Home and technology adaptations to support independent living
• Information on available housing support
• Integrated approaches to delivering housing with care and support in the local area
• Transitional living accommodation

Supporting specific groups

• Armed forces and veteran personnel
• People experiencing homelessness
• People in education
• People on probation or leaving the criminal justice system
• People with drug and alcohol abuse problems
• People within secure and detained settings
• Victims of violence

Identifying and addressing disparities in care and support for people with shared characteristics

• Age
• Disability
• Gender reassignment
• Marriage and civil partnership
• Pregnancy and maternity
• Race (ethnic origin)
• Religion and belief
• Sex (gender)
• Sexual orientation
• Socio-economic status
• Other (free text)

Research

• Awareness of funding for research into acquired brain injury
• Identifying priorities for future research
• Involving patients in research design and participation
• Translation of research into practice

Other areas (please specify)

Which of the previous question’s themes are the most important for the strategy to consider? Please choose up to 3 themes.

If you would like to provide further views as to why you selected these themes as your priority areas of focus, please do so here.

Question

Is there anything else you would like to us to consider, for instance examples of best practice or areas not already included in this survey?

How to respond

The easiest way to participate in the call for evidence as an individual is by completing the public survey.

If you have any technical problems with using the online survey or if you cannot send your submission via the online portal, please log the issue by emailing abicallforevidence@dhsc.gov.uk. Do not send any personal information to this email address.

We also welcome written submissions from individuals and organisations who have an interest and expertise in acquired brain injury. Written submission can include the contribution of data, research and other reports of relevance, and must be limited to 10 pages.

Written submissions can be submitted in Word or PDF format and emailed to abicallforevidence@dhsc.gov.uk.

The address to post written responses is:

Acquired brain injury strategy call for evidence
Department of Health and Social Care
39 Victoria Street
London
SW1H 0EU

Written responses will be destroyed after they have been scanned to create a digital copy.

Next steps

The evidence gathered through this exercise will inform the priorities, content and actions to be included in the acquired brain injury strategy. It will ensure that the strategy is evidence-based and reflects what people identify as priorities. We will publish updates on the strategy in due course.

Data protection

Over the course of March to June 2022, the Department of Health and Social Care (DHSC) will seek the views of individuals and organisations through a call for evidence, to inform an acquired brain injury strategy. This notice sets out how data collected through this call for evidence will be used and respondents’ rights under Articles 13 and/or 14 the General Data Protection Regulation (GDPR).

Data controller

The Department of Health and Social Care (DHSC) is the data controller.

What personal data we collect

You can respond to the call for evidence through our public survey, which can be completed online, or on paper and submitted by email.

We will collect data on:

• whether you are responding as an individual or on behalf of an organisation
• the country you live in, or where your organisation provides services in the UK
• (if responding online) your internet protocol (IP) address (this is for security purposes and will not be attached to your survey response)

If volunteered by you, we will also collect data on:

• your personal characteristics (including your age, sex, gender identity, ethnicity, health status)
• your email address (if completing a paper survey and submitting it by email, or if responding on behalf of an organisation and confirming DHSC can contact you about your response)
• any other personal data you volunteer by way of evidence or example in your response to open-ended questions in the survey

How we use your data (purpose)

Your data will be treated in the strictest confidence.

We collect your personal data as part of the call for evidence process:

• for statistical purpose, for example, to understand how representative the results are and whether views and experiences vary across demographics
• so that DHSC can contact you for further information about your response (if you have given your consent

Legal basis for processing personal data

The legal basis for processing personal data (article 6(e)) is held on the following grounds; to perform a task carried out in the public interest (that of consulting the public), the data subjects have given their consent (through this data protection notice) and the data is necessary for fulfilling policy officials legal obligation to consider the needs of individuals with protected characteristics under the public sector equality duty (for example age and socioeconomic status).

The legal basis for processing your sensitive personal data (article 9(i)) is that it is necessary for reasons of public interest in the area of public health (namely to ensure the acquired brain injury strategy for England takes into consideration the views and experiences of different demographic groups and experts in the field).

Data processors and other recipients of personal data

All responses to the call for evidence will be seen by:

• professional analysts and policy leads working on the acquired brain injury strategy (or overlapping areas) in DHSC
• DHSC’s third-party supplier (SocialOptic), who is responsible for running and hosting the online survey

DHSC may also share anonymised responses with:

• individuals supporting this project within DHSC’s executive agencies and/or executive non-departmental public bodies, such as NHS England
• other government departments
• devolved administrations
• external researchers if additional support is required to analyse the responses received

International data transfers and storage locations

Storage of data by DHSC is provided via secure computing infrastructure on servers located in the European Economic Area (EEA). Our platforms are subject to extensive security protections and encryption measures.

Storage of data by SocialOptic is provided via secure servers located in the United Kingdom (UK).

Retention and disposal policy

DHSC will only retain your personal data for as long as either:

• it is needed for the purposes of the call for evidence
• the law requires us to

This means that personal data will be held by DHSC for a minimum of 24 months.

SocialOptic will securely erase the data held on their system 24 months after the call for evidence online survey closes, or when instructed to do so by DHSC if the data has served its intended purpose (whichever happens earlier).

Data retention will be reviewed on an annual basis. Anonymised data will be kept indefinitely.

How we keep your data secure

DHSC uses appropriate technical, organisational and administrative security measures to protect any information we hold in our records from loss, misuse, unauthorised access, disclosure, alteration and destruction. We have written procedures and policies which are regularly audited and reviewed at a senior level.

SocialOptic is Cyber Essentials certified.

Your rights as a data subject

By law, you have rights as a data subject. Your rights under the General Data Protection Regulation and the UK DPA 2018 apply.

These rights are:

• the right to get copies of information – individuals have the right to ask for a copy of any information about them that is used
• the right to get information corrected – individuals have the right to ask for any information held about them that they think is inaccurate to be corrected
• the right to limit how the information is used – individuals have the right to ask for any of the information held about them to be restricted, for example, if they think inaccurate information is being used
• the right to object to the information being used – individuals can ask for any information held about them to not be used. However, this is not an absolute right, and continued use of the information may be necessary, with individuals being advised if this is the case
• the right to get information deleted – this is not an absolute right, and continued use of the information may be necessary, with individuals being advised if this is the case

Comments or complaints

Anyone unhappy or wishing to complain about how personal data is used as part of this programme, should contact data_protection@dhsc.gov.uk in the first instance or write to:

Data Protection Officer
1st Floor North
39 Victoria Street
London
SW1H 0EU

Anyone who is still not satisfied can complain to the Information Commissioner’s Office. Their website address is www.ico.org.uk and their postal address is:

Information Commissioner's Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF