Executive summary and action required

This paper provides an overview of the stark inequalities faced by people with a learning disability and autistic people. It updates on progress made by the Learning Disability and Autism programme, where we have focused on decreasing the number of people in a mental health hospital and on measurably reducing health inequalities.

However, there is more to do. We highlight the ongoing issues faced by our populations, and link to the ambitions articulated via the 10 Year Health Plan.

The paper sets out our planned approach for the coming years and articulates the requirement for all parts of the NHS to better consider the needs of people with a learning disability and autistic people. We have taken an increasingly joined up approach in relation to neurodivergence and, with the ADHD Programme, we are developing a plan to improve autism and ADHD service provision and demand management.

The Board is asked to:

1. Consider the data and information provided, recognising the considerable inequalities that people with a learning disability and autistic people face.
2. Note recent progress that has been made.
3. Note the there is more to do, and consider the significant opportunity we now have to further improve care and support.
4. Recognise that all parts of our organisation – and the wider NHS – must work together to take achievable, but significant steps to ensure progress.
5. Agree to consider a plan to improve autism and ADHD service provision and demand management at a future meeting.

Background / Issue and context

1. People with a learning disability experience very significant health inequalities. A learning disability is a lifelong condition affecting an estimated 1.3 million people in England (How Common Is Learning Disability In The UK? How Many People Have A Learning Disability? | Mencap), with around a quarter of this number (~330,000 people) represented on a GP learning disability register. People with a learning disability are more likely to be living with multiple health conditions impacting upon quality of life, health outcomes, and mortality risk.

2. Adults with a learning disability die nearly 20 years younger than the general population. The most recent LeDeR report highlighted that, for adults with a learning disability whose deaths were reported to LeDeR in 2023:

1. People from ethnic minority groups who have a learning disability die even younger, at just 34 years old, on average.
2. 38.8% of deaths were considered ‘avoidable’ (deaths from conditions that should have been preventable or treatable) compared to 21.6% for the general population.

3. Autistic people have poorer health outcomes than the general population, particularly poorer mental health. Autism is a common neurodevelopmental condition, with approximately one million autistic people in the UK. About 40% of autistic people also have ADHD and up to 30% have a learning disability. An estimated 70% have at least one mental health condition, but access to mental health services is often difficult if services are not adapted. Autistic people are around seven times more likely to die by suicide than non-autistic people.

4. Referrals for autism assessment have grown very significantly in recent years. In June 2025, there were 236,225 open referrals for assessment – an increase of 11.9% since June 2024. And people often wait a long time for an autism assessment, with 211,104 people waiting >13 weeks (June 2025).

5. We have steadily reduced the number of people with a learning disability in mental health hospitals. However, there remains too many autistic people in these settings. Since March 2015, the overall number of autistic people and people with a learning disability in a mental health hospital has reduced by 31%, with a reduction of 59% for people with a learning disability. However, the number of people in a mental health hospital with autism (and no learning disability) increased by 84% between March 2017 (585) and July 2025 (1,080. (see Annex 1 for  more information) There is more we can do to reduce length of stay. Of  2,010 people with a learning disability and autistic people in hospital at the end of July 2025, 50% had stays over 2 years and 30% had a stay over 5 years.

6. There are now fewer learning disabled and autistic children and young people in mental health inpatient care. There were 230 children in inpatient care at the end of July 2025, a reduction of 8% from March 2017 (250). However, in a trend comparable to – and more profound than – the adult population, 90% of this group of children are autistic with no learning disability.

Programme work to date and progress

7. There has been improvement in care for people with a learning disability over the past few years, with a measurable impact on health outcomes.

1. The percentage of people who have an avoidable death has reduced from 46% in 2021, to 39% in 2023 and the median age of death for people with a learning disability has increased by around one year from 2018 to 2023.
2. There are now 1,360 fewer people with a learning disabilty in an inpatient mental health care setting compared to March 2015.
3. We have made strong progress on the delivery of health checks for people aged 14 and over on a GP learning disability register – at the end of March 2025, 79.9% (267,666) had an annual health check and 77.8% (260,722) had an accompanying health action plan.
4. Over 3 million staff have completed the first component of the Oliver McGowan Training. We have produced and supported training offers for NHS staff, including foundation and enhanced specialist training for psychiatrists.
5. We are rolling out the Reasonable Adjustments Digital Flag to identify, record, flag and share a person’s reasonable adjustment needs. We are supporting implementation through communication; onboarding of local IT suppliers and e-learning for staff. A lived experience group is developing patient resources, and we are exploring the interface with the NHS App.
6. We are delivering a successful partnership with DfE supporting ICBs to work with local authorities, school and parent carer forums to develop a whole school offer to improve support for children who are neurodivergent.
7. We have published guidance supporting frontline staff in acute settings to use the Mental Capacity Act to support good health outcomes.
8. The STOMP and STAMP team continue to support the delivery of the Medicine Safety Project “Psychotropic Prescribing in Learning Disability”’ with 21 ICBs signed up to the work, which will prioritise actions to improve safety of the prescribing of psychotropic medicine.
9. We are working with public health, stakeholders and partners to support the update of flu vaccination by people with a learning disability and on resources for special schools and parent/carers of disabled children to support uptake of childhood immunisations.
10. We have developed clinical and commissioning guidance for ICBs in order to roll out dental and hearing checks to children and young people in special residential schools and eye checks within all special schools.
11. We are working to ensure that consideration of the needs of autistic children and young people and those with a learning disability has been included in asthma, diabetes and epilepsy toolkits and guidance for ICBs.

8. We are supporting local areas to deliver assessment and support to autistic people, but there is more to do to tackle health inequalities.

1. We have been narrowing the gap between new referrals and closed referrals for autism assessments. Last month (June 2025) we closed more referrals than we received for the first time since April 2019.
2. We are supporting local areas to implement the NHS England autism assessment national framework and operational guidance to deliver improved outcomes in all-age autism assessment pathways. We are working with partners and clinicians to support redesign and delivery of evidence-based clinical models. Collaborative work with ADHD and mental health programmes focuses on improved integration across assessment pathways; reviewing the evidence on autism prevalence and models of assessment and support.
3. We continue to work with NICE on their planned review of autism guidance and to work with DHSC to improve regulation across autism services.
4. We have published guidance[2] setting out how local systems should ensure effective mental health support for those who are autistic: a framework on adjustments, including sensory environments, across mental health services.
5. Mental inpatient environments are often very difficult for autistic people. We have taken action to improve people’s experience, including autism training and supporting the development of eating disorder guidance.
6. We are trialling an autism specific health check as well as testing a combined health check for autistic people, those with a severe mental illness and people with a learning disability in two ICB areas.

9. A focus on system readiness to support Mental Health Act reform.

1. Aligned Mental Health Bill proposals to restrict the criteria by which people with a learning disability and autistic people can be detained in a hospital, we continue to support local areas to develop community intensive support teams, community forensic teams, and 24/7 crisis response and to deliver Dynamic Support Registers and Care (Education) and Treatment Reviews in line with national policy. This has been supported by transformation funding (£121 million in 2023/24 and £129 million in 2024/25) alongside ICB spend on learning disability and autism as well as capital funding for community housing of £13 million in 24/25 and 25/26 that has enabled a range of personalised housing solutions to support people to leave hospital.
2. Keyworkers for children and young people in, or at risk of admission to, a mental health hospital now operate in every ICB area. From April 2023 to March 2024, they supported 4,400 children and young people and families.
3. Work to improve the quality of inpatient care for people with a learning disability and autistic people includes delivery of the Mental Health, Learning Disability and Autism Inpatient Quality Transformation programme, resources to support reducing restrictive practices. The Care Quality Commission are now the lead for Independent Care (Education) and Treatment Reviews for people in long term segregation and we continue to support the process.

Considerations and recommendation

10. The direction provided by the 10 Year Health Plan provides a clear opportunity for a renewed focus on people with a learning disability and autistic people – moving care from hospital to community, prioritising prevention and healthy lifestyle, consideration of opportunities for innovation and better use of digital technologies to improve people’s health.

11. And there is more that we can do. There are specific issues and areas that we can concentrate on immediately to support people with a learning disability and autistic people as we look to deliver the 10 Year Plan.

1. Support system readiness for Mental Health Act reform: develop good community support including access to community mental health services for autistic people; discharge people with long lengths of stay in hospital; and implement the new model of care for children and young people’s mental health services. We need a renewed focus on supporting autistic people specifically, to move out of inpatient settings.
2. Improving health inequalities and decreasing avoidable deaths, with a focus on measuring outcomes will be of significant importance.
3. Demand for autism and ADHD assessments has continued to significantly outstrip service capacity, and a reformed approach is needed. We are undertaking joint work on actions to support timely access to assessment, reduce waiting times and provide earlier support.

Interdependencies and wider implications

12. Progress is doable but we need all parts of the organisation and the wider NHS to play their part. There is an opportunity to continue to reduce the number of people in mental health inpatient settings, particularly autistic people, reduce mortality from the leading causes of death for people, and reduce variation in waiting times for autism assessment. Commitment across 10 Year Health Plan workstreams to embed the needs of learning disabled and autistic people in delivery plans, will be key:

1. The Neighborhood Health approach should consider reasonable adjustments to meet the needs of people with a learning disability and autistic people, community hubs should including community learning disability teams, personalised care planning and Personal Health Budgets adjusted for our populations and care closer to home will support Mental Health Act reform.
2. Alignment with digital transformation programmes must include supporting work to ensure accessibility of NHS App and other digital systems, as well as work to support the roll out of the Reasonable Adjustment Digital Flag.
3. Include the needs of people with a learning disability and autistic people in prevention programmes, aimed at promoting healthy lifestyles and reducing avoidable morbidity and mortality e.g. though targeted support within screening, immunisation and obesity prevention programmes.
4. Workforce planning to support delivery of autism assessment  and support off Oliver McGowan Mandatory Training on learning disability and autism.  
5. Ensuring improvements in data quality so that ICBs make best use of data to plan services, improve quality and tailor support to local populations.

13. We ask the Board to note progress and key issues and to support our programme focus following the 10 Year Health Plan. We ask colleagues to consider the impact that concerted effort and leadership can have support better health outcomes for people with a learning disability and autistic people.

14. Following the recommendations of the ADHD Taskforce and the Health and Social Care Select Committee, we have been taking a more joined up neurodevelopmental approach to service provision and our programmes. We have been working with Ministers on an autism and ADHD improvement plan, which includes development of a best practice tariff , NICE review of guidelines and digital technologies and working with Government departments on how schools are supported to manage more needs without needing clinical diagnosis. We recommend the Board considers this work and the work of the ADHD programme, including the report of the Taskforce, at a future meeting.

Annex 1: Key data

Reduction in people with a learning disability and autistic people in mental health inpatient care by patient group:                      

• The total number of autistic people and people with a learning disability in a mental health hospital has reduced by 31% between March 2015 (2,910) and July 2025 (2,010)
• For people with a learning disability (including those who are also autistic) the reduction is 59% over the same period (from 2,295 to 935)
• Under-reporting of autistic people in hospital prior to 2017 means that reliable figures for comparison are not available for March 2015. The number of patients in hospital with autism (and no learning disability) has increased by 84% between March 2017 (585) and July 2025 (1080).

Source: Assuring Transformation (AT)               

Table 1: Learning Disability Annual Health Checks and Health Action Plans in 2024/25 as of 31 March 2025

Note: 18,591 people declined to have an annual health check (5.5% of people aged 14 and over on a GP learning disability register. 

Source: GP Extraction Service (GPES) via Calculating Quality Reporting System (CQRS)

Table 2: Autism Assessment Waiting Times

Source: Mental Health Services Data Set (MHSDS)

Annex 2: Key Findings of the LeDeR annual report 2023

Background

Since the LeDeR reviews began in 2017, over 23,000 reviews of the deaths of people with a learning disability, and since 2022, 127 deaths of autistic people have taken place with the findings used across England to support service improvements and improve health outcomes. The latest LeDeR report and Action from Learning report was published on 2nd September 2025 add link.

Key findings

The report contains data about deaths of people reported to LeDeR from January 2021 – December 2023.

People with a learning disability

• Median age of death has increased from 61.8 to 62.3 however, on average most adults still die at least 19.5 years younger than the general population.
• Median age of death for people from an ethnic minority was 56.9
• The median age at death for people with a severe or profound learning disability is younger (at 57.6) than those with a mild or moderate learning disability (64.9)
• Overall avoidable mortality has reduced from 46% in 2021 to 39% in 2023 however, in the general population only 22% of deaths are avoidable
• For people from ethnic minority groups avoidable mortality remains higher
• Most common avoidable deaths are flu and pneumonia, cancers of the digestive tract (including bowel cancer) and heart disease
• 27% of people who died lived in an area in the most deprived quintile
• 25% of avoidable deaths were caused by conditions categorised as treatable conditions.
• Most common causes of death were:cancers (16.6%), diseases of respiratory system (16.5%), diseases of the circulatory system (16.4%), and diseases of the nervous system (– usually epilepsy 13.5%)
• The most common causes of avoidable death amongst people with a severe or profound learning disability were flu and pneumonia (21.5%), epilepsy (13.0%) and cerebrovascular diseases (7.2%).
• The most common causes of avoidable death amongst people with a mild or moderate learning disability were flu and pneumonia (13.7%), heart disease (11.5%) and cancer of the digestive organs (10.6%).
• Despite year-on-year improvements since 2021, 1 in 5 care packages did not meet the needs of the adult with a learning disability.
• People with a learning disability consistently die more in hospital than those in the general population (57% v 43%) with people from ethnic minority groups dying in hospitals more than those who are white.

Autistic people

The data in the report about autistic people is based on 127 deaths and LeDeR is more likely to receive notifications about the deaths of autistic people who were known to services, so we cannot draw firm conclusions from it.

• 80% people were male
• 54% had depression and 43% had anxiety
• 27% had cardiovascular disease and 24% had constipation
• 22% had respiratory conditions including asthma
• 20% had diabetes
• 32% died by suicide, misadventure or accidental death
• 21% died from conditions of the circulatory system
• 15% died from cancer
• 33% lived in an area in the most deprived quintile