Having a learning disability can affect how a person learns new things during their lifetime. They may need a range of extra support throughout life, depending on the complexity of their learning disability.
This report highlights the lack of progress made in many areas. Data shows high levels of health inequality and limited positive change over time. You can read a summary of the findings or download the full report for more information.
Published November 2021
People with a learning disability like me, want to live good, long lives and achieve our goals. There is so much work still to do to make sure that everyone has the right support. If the guidance puts people with a learning disability first, then the commissioners and services will be able to do the same."
Why focus on people with a learning disability?
Around 950,000 adults and 300,000 children in England have a learning disability. Many people with a learning disability experience poorer health, and die at a younger age.
Having a learning disability affects the way a person understands information, and how they communicate. This means they can have difficulty understanding new or complex information, learning new skills, or coping independently.
People with learning disabilities have individual strengths and abilities. These should be recognised alongside meeting any support needs that are identified.
Care and support services for people with a learning disability should be person-centred, empowering them to make their own choices about what's important to them in their life.
Over 20 years less life
Compared with the wider population, the average age at death for people with a learning disability is 23 years younger for men, and 27 years younger for women.
For people with a learning disability during 2020, COVID-19 was the leading cause of death for males aged 35 or over and females aged 20 and over.
Long hospital stays
57% of people in a mental health hospital with a learning disability, autism, or both have been there for over 2 years.
This page provides a summary of the findings from the report. It includes insight from Sarah Coleman, Bella Travis and James Robinson from Mencap.
For more detailed information, including the sources of data featured on this page, please download the full report.
Insight from Sarah Coleman, health policy officer at Mencap
Sarah Coleman considers the role of NICE in improving outcomes for people with a learning disability.
"We welcome the commitment from NICE to get it right for people with a learning disability. Both mainstream and specialist learning disability services across both health and social care need guidance, support, training and resources to ensure they can meet the needs of people with a learning disability.
For NICE this means good quality guidance and products for the specialist services, and just as importantly, ensuring that guidance for mainstream services enables them to also care effectively. In addition, NICE have a role to play to ensure services can work together, joining up care so people with a learning disability do not fall through the gaps."
Reducing health inequalities
Health inequalities are unfair and avoidable differences in health across the population and between different groups within society.
People with a learning disability are under served in access to healthcare and experience high levels of health inequality.
Research has shown that, compared with the general population, people with a learning disability were 3 to 4 times as likely to die from an avoidable medical cause of death. Most of the avoidable deaths in people with a learning disability were because timely and effective treatment was not given.
We've set out our recommendations across a range of guidance. Once these are implemented, it will result in a reduction in health inequalities for people with a learning disability.
Key points: learning disability health checks
- Many people with a learning disability have considerable, and often multiple, physical and mental health conditions. They're at increased risk of developing chronic conditions from both genetic and lifestyle factors.
- To help increase access to healthcare, our guideline on challenging behaviour and learning disabilities recommends that people with a learning disability should be offered an annual health check.
- Our guideline on mental health problems in people with learning disabilities, which sets out how the annual health check should identify physical and mental health problems.
- Health checks should be undertaken by an appropriately trained provider. Our quality standard on learning disability: care and support of people growing older sets out the minimum elements that should be included in health check protocols.
Key points: cancer screening
- An important element of learning disability health checks is making sure that routine healthcare, such as cancer screening, has taken place, and offering advice if not.
- In the previous 5 years, the proportion of women aged 50 to 69 with a learning disability who received breast cancer screening was 51%. This compares to 65% of women in the same age group without a learning disability.
- Our guideline on care and support of people growing older with learning disabilities recommends that older people with a learning disability should be offered the same routine screening as older people without a learning disability.
Key points: health action plan
- The health action plan is a personal plan, developed by the person with a learning disability with their practitioner to stay healthy.
- In our guideline on care and support of people growing older with learning disabilities we recommend that any actions identified by the annual health check are recorded in the person’s health action plan.
Insight from Sarah Coleman, health policy officer at Mencap
“We hope NICE will support services to take proactive steps to reduce health inequality, for example, by offering an annual health check, which significantly reduce the risk of people with a learning disability dying young, providing vital opportunities for GPs to pick up on changes or anything concerning.
Good quality annual health checks include health action plans, helping people manage long-term conditions, and access healthcare over the coming year.”
Helping people to access support and care
When someone has a learning disability, it's important that it's recorded in their health record. This will help to make sure they receive the care and support that they need.
Our guideline on care and support of people growing older with learning disabilities recommends that health and social care commissioners should identify the number of adults in their area with a learning disability. This information can help to identify gaps in provision, organise services and plan future provision.
Key points: reasonable adjustments
- Reasonable adjustments are a legal requirement to make sure services are accessible to all people with protected characteristics under the Equality Act 2010.
- Our guideline on care and support of people growing older with learning disabilities states that service providers must make these reasonable adjustments.
- Adjustments may also be needed so that people with a learning disability can access work. Our guidance on mental health problems in people with learning disabilities says adults with a learning disability (with or without mental health issues) interested in accessing paid or unpaid work should be supported.
Reception can be difficult. It can be very mixed. Some receptionists are really good and communicate really well. But others are not so good. They do not think about the words they're using and make it hard to understand what I need to do.”
Reducing overmedication and long-term hospital care
Too many people with a learning disability are prescribed medication inappropriately, or are kept in long-term hospital care against their best interests.
Key points: reducing overmedication
- Between 30,000 to 35,000 adults with a learning disability in England are taking psychotropic medicines without a relevant diagnosis.
- Our guideline on challenging behaviour and learning disabilities says that antipsychotic medication should be considered only in very limited circumstances. And always offered in combination with psychological or other interventions.
- Our quality standard on learning disability: behaviour that challenges says antipsychotic medication should be reviewed 12 weeks after starting treatment and then at least every 6 months.
Key points: reducing reliance on long-term hospital care
- 35% of people in a mental health hospital with a learning disability, autism, or both had been in hospital for over 5 years.
- Our quality standard on learning disability: behaviour that challenges sets out actions to prevent long-term inpatient admissions. These include assessment to identify possible triggers and access to specialist behavioural support in the community.
- Our guideline on service user experience in adult mental health recommends that access to mental health services, including crisis support, should be available when needed.
- When staying in hospital, our guideline on challenging behaviour and learning disabilities recommends that as soon as the person is admitted, the hospital and community learning disability team should work together with the person to develop a discharge plan.
- Our guideline on transition between inpatient mental health settings and community or care home settings says that links with home community, including relationships, employment and education, should be maintained.
Insight from Bella Travis, policy manager at Mencap
"Without proper resource and attention on our social care system, many people with a learning disability and their families are left vulnerable to crisis and in-patient admissions, as well as being left reliant on harmful and unnecessary medications. Taking these medications to manage behaviours that so clearly communicate unmet social care needs.
The integration agenda of health and social care opens the door to new ways of working, and real holistic care for people with a learning disability.
We hope to see this clearly reflected in NICE products as we move forward.”
Support and future planning
Data has shown that, in 2019/20, adults using learning disability support services had satisfactory experiences of care. 97% said that support services improve their quality of life and 81% feel as safe as they want. 72% of adults said they are extremely or very satisfied with the care and support they receive.
There is still more that can be done. For example, just 41% say they have as much control over their daily life as they want.
Insight from James Robinson, policy and strategic lead at Mencap
"Support should be given to people with a learning disability, their families and carers to be actively involved in helping to plan and design services in their local area. Local authorities should be supported to develop the necessary data and feedback to understand local needs now and into the future."
Key points: people who access services
We've published a suite of guidance, standards and advice to help support people with a learning disability to live well.
- Our guideline on the care and support of people growing older with learning disabilities aims to support people to access the services they need as they get older.
- The guideline also recommends that practitioners should enable people with a learning disability to think about what they want from life as they age and should ensure that care and support is tailored to their needs, strengths and preferences.
Key points: future planning
Thinking about the future is an important part of person-centred planning.
- Our guideline on the care and support of people growing older with learning disabilities recommends practitioners should have person-centred conversations with people growing older with learning disabilities. These should address their changing needs, wishes and capabilities, and promote their independence.
- The guideline also recommends that practitioners need to build on the person’s strengths and skills. This includes empowering people to build and maintain relationships to reduce isolation.
- We've also produced a person-centred future planning quick guide for practitioners supporting people growing older with learning disabilities.
What we're doing next
To encourage implementation of our guidance and help the wider system address these key priority areas, we will:
- Support NHS England and NHS Improvement in their work to:
- develop a health improvement framework
- deliver reasonable adjustments in healthcare, such as a reasonable adjustments digital flag in health records
- implement recommendations from the Lives and deaths of people with a learning disability review.
- Include learning disabilities in our ongoing work on health inequalities as part of our new strategy for 2021 to 2026. For example, we're working with a NICE fellow to develop a pathway for a successful learning disability annual health check.
- Work with the British Association of Social Workers, Skills for Care and the Care Quality Commission to develop a series of webinars. These will focus on supporting good lives for people with learning disabilities and autistic adults. Topics will include:
- good therapeutic care
- community and home-based support.
- Engage with social care provider networks, Principal Social Worker Networks and regional Association of Director of Adult Social Services branches to advise on the use of relevant NICE guidance.
Our partners are also doing work in this area. Health Education England and Skills for Care are co-ordinating the development of the Oliver McGowan Mandatory Training in learning disability and autism for all health and social care staff. This includes tiers 1 and 2 of the core capabilities framework, which is underpinned by our guidance.
This report highlights the lack of progress made in many areas. We recognise that change can sometimes be challenging and may require pathway reconfiguration. It may also require additional resources such as training and new equipment.
We work with partners including NHS England and NHS Improvement, Public Health England and other relevant organisations to support changes. We also look for opportunities to make savings by reducing ineffective practice.