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This publication is available at https://www.gov.uk/government/publications/reasonable-adjustments-for-people-with-learning-disabilities/reasonable-adjustments-a-legal-duty
1. What we mean by reasonable adjustments
Under the Equality Act 2010 public sector organisations have to make changes in their approach or provision to ensure that services are accessible to disabled people as well as everybody else. Reasonable adjustments can mean alterations to buildings by providing lifts, wide doors, ramps and tactile signage, but may also mean changes to policies, procedures and staff training to ensure that services work equally well for people with learning disabilities.
For example, people with learning disabilities may require :
- clear, simple and possibly repeated explanations of what’s happening and of treatments
- help with appointments
- help with managing issues of consent in line with the Mental Capacity Act.
Public sector organisations shouldn’t simply wait and respond to difficulties as they emerge: the duty on them is ‘anticipatory’, meaning they have to think out what’s likely to be needed in advance.
All organisations that provide NHS or adult social care must follow the accessible information standard by law. The standard aims to make sure that people who have a disability, impairment or sensory loss are provided with information that they can easily read or understand with support so they can communicate effectively with health and social care services.
2. What we mean by learning disabilities
A person with learning disabilities will have:
- a significantly reduced ability to understand new or complex information and to learn new skills, this is known as impaired intelligence
- a reduced ability to cope independently, this is known as impaired social functioning
These will have started before adulthood, with a lasting effect on development.
This doesn’t include conditions like dyslexia, which cause a specific difficulty with one type of skill but not a wider intellectual impairment.
Public Health England (PHE) estimates that 1,087,100 people with learning disabilities, including 930,400 adults, were living in England in 2015. The number of people with learning disabilities recorded in health and welfare systems is much lower. For example, GPs identified 252,446 children and adults as having learning disabilities on their practice-based registers. Those on the registers are likely to be people with more significant learning disabilities.
3. What you might notice if someone has learning disabilities
Like the rest of the population, people with learning disabilities come in all shapes and sizes. Some people look a little different (for example, a member of a health care team might notice a person with Down syndrome) but lots of people do not. It will usually be relatively easy to identify someone with more significant learning disabilities and information may well be passed on by the GP, family carers or support staff. Health teams need to be alert to the larger number of people with mild learning disabilities, who may still need some support.
You might notice someone who has difficulty with:
- reading or writing and forms
- explaining symptoms or a sequence of events
- understanding new information or taking information in quickly
- remembering basic information such as date of birth, address, health problems
- managing money
- understanding and telling time
If you notice someone with these difficulties, you should speak to them to ask more questions about their communication or support needs and check if they understand and remember information.
4. Health of people with learning disabilities
Just as people with learning disabilities and those supporting them need to understand what health care teams can offer, health care teams need to be aware of the common health problems experienced by people with learning disabilities and the factors that can cause problems with access to health information and care.
PHE publishes regular reports on the data that is available on people with learning disabilities in England, including numbers of people, what types of support people get, health inequalities and uptake of health care.
In summary, people with learning disabilities:
- make up about 2% of the population. Only around a quarter of adults with learning disabilities are identified in GP learning disability registers and are known to specialist learning disability services
- are likely to be at risk from the determinants of health inequalities including people with mild learning disabilities
- are at increased risk, with many health problems compared to the general population, for example, many people have several conditions and some people have behaviour that challenges (which may or may not be linked to an identifiable health problem)
- are at increased risk of early avoidable mortality
- often have limited access to health information because access to health care can be compromised by communication difficulties, low expectations, lack of support, poor understanding of mental capacity and lack of reasonable adjustments by health services
- very often rely on others such as family carers or support workers for help with access to health care; access can be poor if those people are not well informed themselves or there is high turnover of workers
- aged 14 or over who are on their GPs’ learning disability registers are entitled to an annual health check and health action plan, for example in 2014 to 15 just under 50% of those on registers had a health check
PHE and NHS Digital produced a study in 2016 that provides detailed data from GP practices covering almost half of all people in England on the health of people with learning disabilities and their use of health services. The report confirmed differences, as outlined above, in the treatment, health status and outcomes of people with learning disabilities compared to the rest of the population.
Family carers are often the people who:
- hold detailed knowledge about a person’s health
- how this affects the person’s life and the rest of the household
- successful ways of communicating with the person
- supporting the person and what he or she will or will not accept.
Support workers also build up such knowledge of an individual, but high turnover of staff and limited support hours mean that this is not always the case. Community learning disability teams (including health professionals and social workers) often have good knowledge about the health and lives of the people with learning disabilities who are known to them. However, many people with learning disabilities are not known to specialist services. People with learning disabilities who attend hospital appointments regularly may have a ‘hospital passport’ that captures vital information about them and their needs and preferences.
5. Summary care records: a useful tool
NHS in England is using an electronic record called the summary care record (SCR) to improve the safety and quality of patient care. The SCR is a copy of key information from GP records. It provides authorised care professionals with fast, secure access to essential information about people when they need care.
The record contains important information about:
- allergies and adverse reactions
- acute medications
- repeat medications
- repeat medications that have recently been stopped
With the person’s consent or a best interests decision for a person who lacks capacity to consent it’s possible to add information, such as:
- details of a learning disability
- details of associated physical and sensory disabilities
- communication needs
- contact details for family carers
- details of the annual health check results or health action plan
- support workers and care services involved
- details of anyone with relevant decision-making powers (for example, a deputy or attorney for health and welfare)
There’s clearly potential to improve the sharing of information that will enable services to make reasonable adjustments. People with learning disabilities and those who support them should ask about SCRs and how to add the information they think is important.
General Medical Council have guidance, information and good practice examples to support medical professional providing care to people with learning disabilities.
6. Hospital admission guide
There’s also guidance on supporting people with a learning disability who are being admitted to hospital available on an archived version of the Learning Disability Observatory’s Improving Health and Lives (IHAL) website.