Organisation objective

• NHS Long Term Plan
• NHS Mandate from Government
• NHS Long Term Workforce Plan

Executive summary

People with a learning disability and autistic people experience very significant health inequalities. These health inequalities are not associated with their learning disability or autism and can be addressed with reasonable adjustments to health services to enable equitable access, significantly improving their experience of care.

The Oliver McGowan Mandatory Training, undertaken by the Board, is being rolled out at pace to raise awareness of these inequalities and adjustments among all NHS staff, helping to mitigate some inequalities. This paper outlines additional programmes of work within the learning disability and autism programme, both planned and underway.

Action required

The Board is asked to continue to provide focus and visible leadership on improving the health and care of people with a learning disability and autistic people, including through the promotion of training among NHS England staff.

The Board is further asked to note and discuss the action underway across primary and secondary prevention activity, health inequalities (particularly for people from ethnic minorities),and ensuring NHS England takes account of the needs of people with a learning disability and autistic people in future strategic and operational plans.

Background

1. In 2017, NHS England began the rollout of the world’s first national review of deaths of people with learning disabilities, with the aim of identifying common factors which can be addressed to improve care for all patients. In 2022, the Learning from Deaths (LeDeR) service improvement programme was widened to also review the deaths of autistic people. Data gathered via the LeDeR programme and other sources evidence that:

• 49% of the deaths of people with a learning disability in 2021 were avoidable compared to 22% in the general population.
• the median age of death for people with a learning disability was 61 compared to 82 in the general population.

2. Inequalities are even starker for people from ethnic minority groups:

• The average life expectancy for people with a learning disability from an ethnic minority was 34, compared to 62 years for people denoted as ‘white’ (NHS Race and Health Observatory, 2023).
• Of those with a learning disability who die in hospital, 51% from ethnic minority groups have a ‘Do Not Attempt Cardiopulmonary Resuscitation’ (DNACPR) recommendation, compared to 73% for those who are white (NHS Race and Health Observatory, 2023).

3. As Oliver McGowan’s case illustrates, these deaths are often avoidable with awareness and care adjustments. Long term conditions associated with avoidable deaths include:

• respiratory conditions – 17% of deaths were deemed to be avoidable with people 1.4 times more likely to die compared to other long-term conditions.
• Diabetes – 17% of deaths were rated as avoidable.
• Hypertension – 14% of deaths were rated as avoidable.
• Cancer – 8% of deaths were avoidable, with people twice as likely to die compared to people with other long-term conditions. For example, 43% of people with a learning disability with colorectal cancer die below the bowel screening threshold age of 60.

4. Great care is happening for many people with a learning disability and autistic people. For example, Calderdale and Huddersfield NHS Foundation Trust used their elective care waiting list data to eliminate a backlog for people with a learning disability.

5. There are a number of actions being led by our Learning Disability and Autism programme to address health inequalities as well as delivery of Oliver McGowan Mandatory Training by Workforce, Training and Education:

• Development of a Reasonable Adjustments Digital Flag (RADF): RADF will be rolled out by April 2024 and will identify, record, flag and share a person’s reasonable adjustment needs via the NHS Spine, and their underlying condition/significant impairments so that health and publicly funded care providers are alerted to their needs and can make every best effort to meet the necessary reasonable adjustments.
• Improving primary and secondary prevention of long-term conditions: increasing access to COVID and Flu vaccinations; introducing pneumococcal vaccinations; supporting obesity and diabetes; increasing cancer screening, CVD and respiratory activities.
• Delivery of Learning Disability Annual Health Checks (AHC): By end March 2023, 78.1% of people aged 14 and over on a GP learning disability register had received an AHC. A national focus on supporting people who did not receive an AHC previously, income protection and additional payments for practices, capacity afforded by the Additional Roles Reimbursement Scheme, and increased guidance for GPs all supported this improvement. We are on track for similar achievement in 2023/24.
• Autism health checks: A specific health check for autistic people has been created and is currently being piloted in four NHS regions. Next steps include research to investigate feasibility, acceptability, and effectiveness.
• LeDeR (Learning from the Lives and Deaths of People with a learning disability and autistic people): The next annual report will be published in October 2023. We have devised a data tool enabling ICBs to identify review trends improving local care pathways; launched respiratory resources with the British Thoracic Society; launched an online resource bank, developed sleep apnoea resources; and will launch an awareness campaign in ethnic minority communities to tackle the under-reporting of deaths to the LeDeR programme.
• Race and Health Observatory (RHO) report and action plan: Action plan being developed recognising responsibilities across the NHS to drive cultural and behavioural change. • STOMP (Stopping the over medication of people with a learning disability, autism or both) and STAMP (Supporting Treatment and Appropriate Medication in Paediatrics): Work includes hosting family and self-advocate events to increase awareness, sharing good practice of how STOMP-STAMP enables quality of life changes; STOMP e-learning modules designed to equip individuals, families and professionals with confidence to discuss medication impacts on health and behaviour and to undertake medication reviews. The team’s work on Developing a Community of Practice has just won the HSJ Patient Safety Learning Disability Initiative of the Year Award.
• Autism waiting times: A national framework and operational guidance for autism assessment pathways has been published. In 23/24, £4.2 million was made available to improve services for autistic children and young people, including autism assessment pathways and continuing the ‘Autism in Schools’ programme. Future work includes support for localities to understand their autistic population’s needs, supporting planning for service capacity and workforce.
• Workforce development and Oliver McGowan Mandatory Training: We continue to support and encourage local areas to develop integrated, workforce plans for the learning disability and autism workforce. Training offers have been produced and we will support the roll out and spread of Oliver McGowan Mandatory Training and support delivery of NHS Workforce Plan ambitions Since November 2022, there have been over 2.5 million e-learning launches for the Oliver McGowan Mandatory Training and over 740,650 completed which is the first part of Tier 1 and Tier 2. Work is continuing to develop Part 2 sessions which requires autistic trainers and trainers with a learning disability to deliver the interactive content. To date over 200 trainers have been trained.
• Children and young people: Pilots and evaluations to ensure that children and young people with a learning disability and autism in special residential schools have access to and complete sensory checks. Clinical and commissioning ICB guidance will be developed, and we have worked with other NHS England Programmes to ensure a consistent focus on children and young people with a learning disability and autistic children.
• Reducing reliance on mental health inpatient care: we continue to make progress on reducing the number of people with a learning disability and autistic people in a mental health inpatient setting so that the number as at August 2023 was a 30% reduction since March 2015. Work to meet the commitments in the NHS Long Term Plan includes supporting local areas to deliver Care (Education) and Treatment Reviews (C(E)TRs) and Dynamic Support Registers (DSRs) in line with guidance published in January 2023. In 2023/24 we are investing £125m of health funding as part of the NHS Long Term Plan for services for people with a learning disability and autistic people. This includes funding for community support, Children and Young People’s keyworkers, and specific support for young people with autism. 2023/24 sees the continuation of the national housing capital programme with an annual allocation of £13m. We continue with our peer support offer for health and local authority partners in partnership with the Local Government Association; delivery of Small Supports programme personalised community services) and of learning disability and autism training for commissioners.

Considerations

6. Alignment to strategic objectives: The programme’s workplan remains aligned to the commitments set out in the NHS Long Term Plan, the NHS Mandate and NHS England’s Core20PLUS5 approach in addressing health inequalities for people with a learning disability and autistic people (NHS England, 2019). Alongside the NHS Long Term Workforce Plan, 2023/24 NHS Operational Planning Guidance highlights the importance of the NHS workforce with the right capacity and skills for delivery. Crucial steps in delivery are supporting uptake of annual health checks, RADF implementation and progressing the national action plan in response to the RHO report, and supporting ICBs in using data to understand local populations’ needs and to develop inclusive interventions and services.

7. Financial implications: The activities and work of NHS England’s regional and national learning disability and autism programme is funded for 2023/24 and 2024/25. Decisions about future programme of work will depend on the NHS financial settlement and strategic priorities, determining our ability to support key enablers such as investment in the growth and retention of specialist autism teams to meet rising demand for assessment services, further growth of specialist learning disability liaison nurses within acute hospital settings, improving inequalities faced by people from ethnic minorities with learning disability and autistic people leading to poorer care and health outcomes, improving primary and secondary prevention activities to enable prompt treatment and improve life expectancy.

Public Board paper (BM/23/31(Pu)