A harsh light has been shone on the disproportionate impact of COVID-19 on certain groups in society. This includes people with a learning disability and autistic people: emerging evidence includes the Care Quality Commission (CQC) reporting a significant increase in deaths of these groups of individuals, and the Office for National Statistic highlighting the uneven impact of coronavirus and the wider social consequences on disabled people more broadly.
Yet, people with a learning disability and autistic people were facing a distinct set of significant challenges long before the outbreak of COVID-19. There has been a deep, historical inequity in the development, commissioning and provision of care and support for these groups of individuals, often damaging their health and wellbeing, life expectancy, and in extreme cases placing them open to abuse. Alongside these challenges we see increasing demand, 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 do not have timely access the care and support that they need, from diagnosis and throughout their lives.
There has been a deep, historical inequity in the development, commissioning and provision of care and support for these groups of individuals, often damaging their health and wellbeing, life expectancy, and in extreme cases placing them open to abuse.
Despite these challenges, most learning disability and autism services are providing people with good care. As of 1st April 2020, all NHS community mental health services or people with a learning disability or autism were rated by CQC as ‘good’ or ‘outstanding’, as were the majority (83%) of wards for people with learning disabilities or autism in NHS hospitals. We interviewed a number of trust leaders of NHS services providing high quality care. In those conversations they made clear their commitment to working with service users to ensure high quality, person centred, holistic support. There are a range of further steps these trusts are taking to deliver high quality care – from raising awareness and improving recruitment, to putting service users at the heart of the redesign and innovation of services. This has yielded valuable lessons for all those involved in commissioning and providing care and support for people with a learning disability or autistic people.
Despite these challenges, most learning disability and autism services are providing people with good care.
Learning and action across the health and care system is very much needed, given the recent examples of poor quality care and abuse, including the shocking treatment of people at Whorlton Hall and prior to that at Winterbourne View. These cases and the significant increase in the proportion of wards in independent hospitals that have been rated inadequate by CQC over the last nine months make it clear that progress in improving the availability of consistently high quality care for these groups of service users across all settings, and in all areas of the country, has been unacceptably slow.
Whilst there are significant challenges facing the sector, there are also a number of opportunities now to deliver change. The NHS has committed to prioritising the improvement of the care and support for people with a learning disability and autistic people over the next decade, and there is renewed momentum behind the ambition to fundamentally tackle health inequalities for these groups of individuals following the UK’s experience of responding to COVID-19 so far.
Whilst there are significant challenges facing the sector, there are also a number of opportunities now to deliver change.
To improve people’s access to high quality care and support as close to home as possible, no matter where they live or the complexity of their needs, rapid progress needs to be made in five key areas in particular. The first concerns tackling the stigma associated with learning disabilities and autism and raising awareness of the need to improve the accessibility and quality of care and support for these groups of individuals nationally and locally. We also need more transparent funding for the sector to ensure money reaches the frontline services that need it most. Beyond that there must be sustainable levels of funding across health, social care and wider public services to provide people and their families with the upstream support they need, including high quality housing provision in places where people want to live.
The fourth key area that we need to prioritise is promoting careers in the sector and incentivising the training and recruitment of the full range of professionals with the specialist skills required to deliver high quality care. We also need to ensure training and the professional development of existing staff is adequately funded: they are working in a highly regulated environment, caring for service users with some of the most complex needs of all, and this must be reflected in how they are trained and supported. Finally, plans to provide care closer to home and invest in community support must be properly resourced and effectively commissioned, with service users and experts by experience playing a leading role in this work, and learning from what works effectively shared nationally and locally.
Of all the challenges facing people with a learning disability and autistic people, our conversations with trust leaders have made it clear that our mindsets and a lack of understanding and ambition are among the greatest. We must make the most of opportunities in front of us to deliver genuine and lasting change: and if we get how we commission, modernise and provide person centred care right for people with learning disabilities and autistic people, we will get this right for everyone.
This article was also published in the Independent.