The COVID-19 pandemic has brought into sharper focus the longstanding structural inequities people with a learning disability and autistic people, and the services they rely on, have faced over many years. This has meant too many people are not receiving the care they need and should expect from the health and care system. While more evidence needs to be gathered and further work done to better understand the risk factors in terms of COVID-19, we are seeing growing evidence of the uneven impact the pandemic is having on these groups of individuals: CQC figures have shown a significant increase (CQC, June 2020) in the number of deaths of people with a learning disability and autistic people, while recent findings from the ONS (Office for National Statistics, June 2020) suggest disabled people more broadly are more worried about the effect of the pandemic on their wellbeing, more likely to report worsening health problems, and feeling more lonely as lockdown continues, than non-disabled people.
The pandemic has also presented a host of new challenges for trusts providing services for people with a learning disability and autistic people, as it has for services across the NHS. However, these services were facing a distinct set of challenges long before the outbreak of COVID-19 began. Chief amongst these is historic underfunding of learning disability and autism services: in many instances they have lacked the investment in modernisation and development available to other parts of the health and care sector. Unusually, given the healthcare setting, these services are reliant on a mixed market of provision: the independent sector delivers a significant proportion of NHS funded inpatient services, while the majority of community services are provided by the NHS (CQC, October 2019). In addition, learning disability and autism services face particular challenges in recruiting and retaining key groups of staff.
While there are a number of challenges impacting on the system’s ability to provide the right level and nature of support for people consistently in all areas of the country, most learning disability and autism services are providing people with good care. On 1 April 2020, all NHS community mental health services for people with a learning disability or autism were rated good (92%) or outstanding (8%) by CQC, as were the majority (62% as good and 21% as outstanding) of wards for people with learning disabilities or autism in NHS hospitals (CQC, April 2020). CQC also rated the sole independent community mental health service for people with a learning disability or autism as outstanding. However, a smaller majority of wards in independent hospitals were rated as good or outstanding (51% and 7% respectively), and there has been a significant increase in the proportion of wards in independent hospitals that have been rated inadequate over the last 9 months – 22% were rated inadequate on 1 April 2020 compared to 5% on 31 July 2019 (CQC, July 2019). 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, show that progress in improving the availability of consistently high-quality care for these groups of service users across all settings has been unacceptably slow.
On 1 April 2020, all NHS community mental health services for people with a learning disability or autism were rated good (92%) or outstanding (8%) by CQC, as were the majority (62% as good and 21% as outstanding) of wards for people with learning disabilities or autism in NHS hospitals.
Based on interviews with the leaders of seven trusts in the NHS providing good and outstanding learning disabilities and autism services prior to the outbreak of COVID-19, and broader ongoing engagement with trust leaders since, this briefing seeks to:
- share examples of high-quality care across the NHS
- explore the challenges that are most impacting the sector’s ability to provide the right level and nature of support for people consistently
- set out where we might go next to address key, structural issues in the co-development, commissioning and resourcing of learning disability and autism services to ensure that the tailored care needs of every patient and service user are met.
We would like to thank all of the trust leaders who have contributed their insights. We hope that this briefing provides a helpful contribution to the debate about how we work collectively to improve learning disability and autism services for all over the next decade.
My brother Brian has a Learning disability and he often reminds me that his challenges have never been his disability but only the mind-set of others. He has always wanted to live independently and has done so successfully for over 10 years. He and we have found great joy in his independence and what I have learned most on my journey with him is that we are only constrained by our lack of understanding and ambition. He and his friends wanted me to let you know that it’s not they but we that have to change.Chief Executive, Lincolnshire Partnership NHS Foundation Trust