Over the last five decades, national policy has been rightly focused on moving people with a learning disability and autistic people that are inappropriately placed in hospital settings into community-based care (House of Commons, 1971). The Transforming care programme has been the key national policy vehicle for delivering this ambition since 2015. However, the programme has faced considerable criticism - progress has been much slower than hoped and timelines for delivery have shifted significantly. Last year the sector missed the key aim of closing 35-50% of inpatient beds by March 2019. Yet, the NHS long term plan is clear that improving the care and support for people with a learning disability and autistic people is a key priority (NHS England, January 2019). The plan sets a new target to reduce inpatient provision by 50% by 2023/24 alongside committing to a range of further steps over the next decade, including increasing access to support for children and young people with an autism diagnosis, improving community based support, and investing in workforce and training.
Demand for personalised care for people with a learning disability and autistic people has risen alongside that of other services across the health and care sector over recent years. Prior to the COVID-19 pandemic, referrals into NHS funded secondary mental health, learning disabilities and autism services were increasing overall, and the number of people in contact with learning disabilities and autism services has also steadily been rising since records began (NHS Digital, May 2020). However, there is particular evidence of a need to address longstanding structural inequities for users of learning disability and autism services, many of whom are particularly vulnerable individuals. We know for example that people with a learning disability are more likely to suffer (Mencap, 2019) from physical health issues which are often not addressed promptly, more likely to experience poor mental health (Mencap, 2019), and more likely to die earlier (University of Bristol, July 2020) than those without. People with learning disabilities also make up a disproportionately large percentage of the prison population (Prison Reform Trust, June 2012).
Prior to the COVID-19 pandemic, referrals into NHS funded secondary mental health, learning disabilities and autism services were increasing overall, and the number of people in contact with learning disabilities and autism services has also steadily been rising since records began.
Historical under investment in the NHS’s core capacity to deliver services for people with a learning disabilities and autistic people, exacerbated by a sustained period of cuts to local authority support, has impacted on the ‘market’ of provision for these services. Given that a significant number of recent cases of poor care relate to NHS-funded care in the independent sector, there are broader questions to be answered – as NHS England and Improvement’s chief executive Sir Simon Stevens has made clear (Health Service Journal, October 2019) – around the quality of service commissioning and the impact of a mixed market of independent and NHS provision on these vulnerable groups of service users.
Further significant challenges impacting trusts’ ability to provide the right level and nature of support for people consistently include: disjointed and fragmented approaches to commissioning, workforce shortages - particularly of specialist staff; and constrained funding for high-quality services in the community and social care. These issues are placing unsustainable pressures on the health and care system and mean too many people are not able to access the care and support that they need, from diagnosis and throughout their lives, in a timely way.