While most trusts in the NHS are delivering good care to people with a learning disability or autistic people, and several are delivering services CQC has rated as ‘outstanding’ from whom others can learn, there remain too many people who are not receiving the right level and nature of support in all areas of the country. There are significant, and often systemic, challenges facing trusts that are impacting on their ability, and the system’s more widely, to provide the care and support people need and should expect from the health and care system, as we explore below.
As is the case for the mental health sector (NHS Providers, 2020), many of the challenges the learning disability and autism sector face are rooted in the fact these services have suffered a historical, structural disadvantage compared to physical health provision, with the stigma associated with learning disabilities and autism one of the key reasons for this disadvantage. However, in many respects the challenges for learning disability and autism services run even more deeply: efforts to challenge stigma and raise awareness of the need to improve the nature and quality of care people with a learning disability or autistic people lag considerably behind the strides we’ve seen made to increase access to and improve the quality of mental health care, and have gained significantly less traction to date. This has in turn impacted to an even greater extent on the scale of investment and innovation in learning disability and autism provision, how these services are commissioned, contracted and paid for, and the transparency and governance of funding flows.
The level of stigma and lack of awareness has not only had a fundamental impact on how learning disability and autism services are viewed, supported and delivered, but has also impacted on the national policy debate concerning these services and their development. This is a particular issue with regards to discussions concerning the most appropriate service models for highly specialist and forensic learning disability and autism services, which seems to contrast considerably from the – often more balanced, nuanced and evidence-based – discussions national policy makers, trusts and their partners have about the best approach to delivering specialised physical health services given the nature of the activity and the geographic spread of their patient populations (NHS Providers, 2020).
One trust leader told us it is widely accepted that complicated heart surgery should not be performed in every district general hospital, nor is it common to see widespread support for the dismantlement of physical health services rated ‘outstanding’ by CQC, yet the same cannot be said when it’s a highly specialist learning disability and autism service in question.
Stigma is also having an impact on attracting healthcare professionals to work in services for people with a learning disability and autistic people. Several trust leaders spoke of their frustration and deep sadness that some staff feel ashamed to say they work in a learning disability and/or autism service. They stressed the negative perceptions of the sector need to be tackled, and a positive narrative developed around this area of work, if the significant workforce issues the sector faces are to be effectively addressed. Trust leaders have expressed particular concerns about the prevailing misconception that staff providing care for people with a learning disability or autistic people are in some way ‘low skilled’, highlighting staff are working in a highly regulated environment, caring for service users with some of the most complex needs of all.
I have worked in learning disability services clinically/operationally and in nurse education for 39 years and feel that we make the same mistakes every decade and never quite manage to embed the learning effectively. We need to focus on discrimination as an issue for people with learning disabilities and highlight the skills that the learning disability workforce have that can help to tackle this across the system. Learning disability nursing is a great career and wonderfully fulfilling so we need to get the message out there.
There has been a deep, historical under investment in the NHS’s core capacity to deliver services for people with a learning disability and autistic people, which has been exacerbated over recent years by a sustained period of cuts to local authority support. This has meant that these services are, unusually for services in a healthcare setting, reliant on a mixed market of provision with the independent sector delivering a significant proportion of NHS funded inpatient services, while the vast majority of community mental health services are provided by the NHS. This has led to an unacceptable number of people not being able to access high-quality care and support and the range of services required to meet this group of individuals’ sets of needs are not prioritised across the system.
The trusts we interviewed identified that the split in the commissioning of health and social services between NHS England, CCGs, and local authorities can lead to particularly disjointed and fragmented care for people. CCGs and local authorities, in particular, approach commissioning very differently and have distinct standards and models of commissioning and contract monitoring that create difficulties in the system. Furthermore, often there is not a single commissioner commissioning packages of care and services strategically across an area, which trust leaders identify as a significant barrier to joined up, holistic care being available that fully meets people’s individual needs. Trusts may be commissioned to carry out autism assessments - the waits for which can span years - but not commissioned to deliver services that would provide the care and support for people diagnosed by such assessments. In such cases, individuals may have to travel beyond their local area to access the care and support they need: while this may be warranted if highly specialist, short-term, inpatient care is required, it should not be acceptable for longer-term care and support not to be available for individuals within their local area.
Trust leaders have told us commissioning challenges are particularly significant for services funded by CCGs and local authorities if there is a lack of commissioning expertise within these local bodies, particularly for those with more complex needs. The sheer number of different agencies often involved in commissioning and delivering various aspects of care and support people may need to meet their individual set of needs means that, even when people do finally receive a diagnosis, this does not ‘unlock doors’ despite early diagnosis and a coordinated response being so crucial.
The trusts we interviewed identified that the split in the commissioning of health and social services between NHS England, CCGs, and local authorities can lead to particularly disjointed and fragmented care for people. CCGs and local authorities, in particular, approach commissioning very differently and have distinct standards and models of commissioning and contract monitoring that create difficulties in the system.
Revenue and capital investment are important factors that trust leaders have identified as impacting on the delivery of high-quality care and support for people with a learning disability and autistic people. A key requirement for delivering on the Transforming care agenda is the availability of robust multidisciplinary community services, including 24/7 access to crisis care services. However, trust leaders have stressed that there have not been adequate levels of funding available to local areas to date to deliver the community services needed to support the discharge of people inappropriately placed in hospital, or help avert the need for an inpatient admission in the first place.
There are three key elements to the funding challenges trusts face:
- It was intended that money released through the decommissioning of inpatient beds to local health bodies would be transferred to invest in community services. However, beds in learning disability and autism services have closed at the same time as investment in community care has reduced: according to analysis of data collected by the NHS Benchmarking Network from specialist learning disability services across the UK, total expenditure on community learning disability and autism services decreased (NHS Benchmarking Network, 2018) by 35% between 2013/14 and 2017/18.
- More broadly, trust leaders have stressed that the Transforming care programme is not cost neutral. While there has been national transformation funding allocated, this has not been enough given the complexity and level of challenge in meeting the programme’s ambitions. The ad hoc, non-recurrent nature of funding allocations over the years has also limited trusts’ plans for investment due to the level of the uncertainty over the availability of funding in future years.
- Trust leaders have highlighted that historically low levels of capital investment and the length of time and difficulties it takes to get capital investment bids approved, even for small schemes, have been a further significant issue. Much needed capital investment would improve facilities and timely access to high-quality support for people. It would also improve the of morale staff working within services, and their safety: staff are more likely to suffer from assault and injury if they are working in facilities that are ill-equipped to look after people with more complex needs.
Beyond this, severe funding constraints and uncertainty for social care and wider public services is a further important challenge. These services provide vital role upstream support to people and their families and minimise the risk of people reaching crisis point in the first place, or averting the need for an inpatient admission if they do. Trusts leaders are deeply concerned about the continued, long-term neglect by successive governments and a failure to fully fund the social care sector in particular. This has left many areas without a sufficient number of social care providers that are able to provide the right care and support to people with a learning disability and autistic people, nor able to deliver high-quality supported living and domiciliary care packages, in particular for people with the most complex needs. Indeed, the stability of the adult social care market was a key concern highlighted by CQC in its State of care report in October of last year, and the incredible pressures incredible pressures (Association of Directors of Adult Social Care Services, June 2020) social care providers have been managing in very difficult circumstances during the current COVID-19 crisis has only brought the longstanding issues facing the social care sector into even sharper focus and underscored how urgent the need is for real investment and reform.
Trust leaders have highlighted that historically low levels of capital investment and the length of time and difficulties it takes to get capital investment bids approved, even for small schemes, have been a further significant issue. Much needed capital investment would improve facilities and timely access to high-quality support for people.
Staff are central to delivering high-quality, personalised care, and workforce shortages are a key factor impacting on trusts’ ability to provide the right level and nature of support for people with a learning disability and autistic people. The supply of clinical and non-clinical staff with the right skills and expertise to deliver care and support that meets people’s individual needs is heavily constrained. Trust leaders expressed particular concerns about the extent to which learning disability nurse training has diminished over recent years and the disproportionate impact ending the student bursary had on learning disability nursing applicants - both have exacerbated the gaps (National Audit Office, March 2020) in learning disability expertise that already exist in the NHS workforce, which trust leaders fear will only deepen in the most immediate term due to the fact many nurses currently working in the sector are nearing retirement age.
Recent announcements by the government that financial support for student nurses will be reinstated is welcome, but trust leaders have stressed there are also significant gaps in the number of occupational therapists, psychiatrists, psychologists and other allied health professionals with specialisms in learning disability and autism who play a crucial role in delivering the right care and support for people. It is important to note that, currently in the NHS overall, vacancy levels have come down as final year student nurses and doctors and returners have been able to work on the frontline to support the NHS during the pandemic. However, it is not clear whether this will be sustainable going forwards nor whether this has boosted the learning disability and autism workforce specifically.
During our interviews with trust leaders, the importance of training came to the fore, particularly training to ensure staff working in learning disability and autism services are equipped with the right skills and feel confident to manage challenging behaviours, such as positive behaviour support, personal safety and trauma informed care. Trust leaders also stressed that ensuring staff had time for supervision and reflection is crucial to maintain the ongoing learning, development and confidence of staff to manage the complexities of this area of practice.
Recent announcements by the government that financial support for student nurses will be reinstated is welcome, but trust leaders have stressed there are also significant gaps in the number of occupational therapists, psychiatrists, psychologists and other allied health professionals with specialisms in learning disability and autism who play a crucial role in delivering the right care and support for people.
The right training and time for supervision and reflective practice was stressed as particularly important to reducing the use of restraint and other restrictive practices. There has been a national programme of work, the Reducing restrictive practice (RRP) collaborative programme, underway since 2018 with the aim of supporting wards from 26 trusts across England to reduce the use of restrictive practice. Some trusts stand out for the significant, positive progress they have made in this area: Mersey Care NHS Foundation Trust has significantly reduced the use of restraint in its units and has even been able to sustain a reduction in levels of restraint during the pandemic period despite the significant pressures COVID-19 has presented for staff and service users. However, as CQC has made clear (2019), while the day-to-day responsibility for quality of care sits with managers and staff, shared learning and effort is needed from across the health and care system – and broader systemic issues addressed – in order to tackle the inappropriate use of these practices in all settings in every part of the country, and fundamentally improve the current quality and system of care for people with a learning disability or autism.
Training for staff working in other NHS services and settings so they can make reasonable adjustments and greater awareness is raised of learning disabilities and autism has also been highlighted by trust leaders as essential to tackle and overcome the issues of stigma and discrimination.
Delivering change and the policy environment
As highlighted in the introduction, the Transforming care programme has been the key vehicle for delivering on the ambition to move everyone with a learning disability and/or autism that is inappropriately placed in hospital into community-based care since 2015.
Trust leaders stressed that they support the programme’s aspirations of ‘homes not hospitals’ and welcome the intentions behind the policy, however, they have significant concerns with how the programme has been implemented and the process of change to date. Trusts stressed the complexity and level of challenge in delivering the programme’s ambitions, which has hampered progress. What has emerged in our interviews is that the complexity of cases and level of resources and time required to implement the policy effectively were not fully understood prior to the programme being put in train. This echoes conclusions reached by the National Audit Office in 2015, when it looked into the policy following the government missing its initial goal set in 2012 to transfer all people inappropriately placed in hospital into the community by June 2014.
In particular, trust leaders described the Transforming care agenda as “a paradigm shift” in how care and support is delivered, which is as much about high-quality supported living provision as health services. Yet, meeting targets to reduce the number of inpatient beds in the NHS and independent sectors has been the overriding focus to date, as opposed to, and in advance of, ensuring high-quality, resilient, community-based alternatives and wider support packages to enable people to live in their local communities more independently are available. Trusts highlighted that, for some people and in certain areas, inpatient services are providing a more therapeutic environment than any provision currently available in the community, and they are increasingly concerned about the risks of providing sub optimal care to people with a learning disability and autistic people - particularly adults - if they continue to try to deliver the Transforming care agenda within this current context.
Transforming care was not realistic in terms of the timescales and in the focus on reducing beds which should have come after strengthening the resilience of community provision. We have seen this approach work at our former Calderstones services – bed reduction has been possible and successful because we stepped up a community forensic offer.Chief Executive, Mersey Care NHS Foundation Trust
Trust leaders also expressed concern that some areas are so short of beds in the right setting that people, as an absolute last resort, are being placed in inappropriate mainstream mental health beds or placed out of area. This is a particular issue for forensic services, where there has been a significant reduction in beds and there is a severe lack of appropriate, community-based models of care, which is also leaving vulnerable people in prison inappropriately.
The knock on impact on the NHS when services are rated inadequate by CQC, and closed in the most serious cases, is an additional concern raised by trust leaders: it has an immediate impact on NHS services, which are required to step into the breach and provide additional services and support despite already being under significant pressures themselves.