Significant action is needed to address the historical inequity surrounding learning disability and autism services, which still impacts individuals’ lives and continues to challenge how we commission, modernise and provide person centred care for service users.

However, despite the challenges, trusts feel there are number of opportunities to affect change: after all the NHS long term plan recognises that improving the care and support for people with a learning disability and autistic people needs to be prioritised over the next decade, and there is renewed momentum behind the ambition to fundamentally tackle health inequalities following the UK’s experience of responding to COVID-19 so far.  

We have distilled what trusts leaders have told us into a number of key priorities and challenges that national bodies, providers and their partners must all work together to ensure significant progress is made on as soon as possible, in order to meet the shared ambition of making high-quality care available for everyone, as close to home as possible, no matter where they live or the complexity of their needs. These include:


Tackling stigma and raising awareness of historical inequities

Immediate action needs to be taken nationally and locally to tackle the stigma associated with learning disabilities and autism, and raise awareness of the need to improve the accessibility and quality of care and support for these groups of individuals. This is vital to ensuring appropriate support and priority is given to the full range of services people rely on, at levels which reflect the significant structural inequities these groups of individuals and services have suffered historically.

Discussions and decision making regarding the best approach to delivering high-quality, person centred care in highly specialist and forensic settings also needs to be more balanced and evidence-based, taking into better account the nature of the care and support provided by these services and the geographic spread of their service user populations as per the approach taken for specialist physical health services.


Improving funding mechanisms and securing wider investment

Systems need to keep a sharp focus on the need to invest and strengthen community services and disinvest in inappropriate and poor-quality care. However, funding mechanisms also need to be improved and made more transparent to guarantee funding for the sector reaches the frontline services that people with a learning disability and autistic people rely on and need most, and is invested in the establishment of the full range of high-quality services these groups of individuals need to live as independently as possible in their local communities where these do not currently exist. Prioritising the NHS long term plan’s ambition to give people a personal health budget where possible, with the appropriate governance and safeguards, is also important so that funding truly follows service users and they can get the tailored and bespoke packages of care required to fully meet their individual needs.

Securing sustainable levels of revenue and capital funding across health, social care and wider public services – including education, housing and employment support – is crucial to invest in services for people with more complex needs that require bespoke care and support. Wider investment in local government and social care is particularly needed to create a more coherent and sustainable supported living and housing market so that all people, no matter the complexity of their needs, have access to secure, high-quality housing provision in places where they want to live.


Expanding and developing the workforce

The focus on the strategic development of the learning disability and autism workforce must be maintained in the framework of the final People Plan. Plans for the workforce need to build on the welcome recent reinstatement of grants for student nurses, prioritise the promotion of careers in the sector and incentivise the training and values-based recruitment of the full range of professionals with the specialist skills required to deliver high-quality care. However, we note that the national People Plan only focuses on the NHS workforce, as expected, and there remains a need for national policy makers to align their thinking on a coherent approach for health and social care together, reflecting the work now underway by local systems.

Ensuring a multi-year funding package is allocated in the upcoming spending review to invest in training and professional development for existing staff is also crucial to ensuring services are delivered by staff equipped with the right skills, values and behaviours to deliver high-quality, person centred care. The cost of delivering adequate supervision, support and systems for reflective practice and learning also needs to be factored in, given their key role in enabling good practice development and improving staff retention. More broadly, we need to secure an adequate workforce supply so that staff are able to undertake training, reflective practice and supervision, separately to the time they spend delivering care and support to service users directly.


Integrated planning, joint working and genuine coproduction

There are welcome plans set out in the NHS long term plan to support local providers to develop new models of care to provide care closer to home and invest in intensive, crisis and forensic community support. This work must be properly resourced and effectively commissioned, particularly taking into account the ongoing pressures the NHS expects to face due to COVID-19. Service users and experts by experience have a key part to play in leading the transforming care programmes in their areas in partnership with lead providers and commissioners.

Nationally and locally we need to share and learn from what works so that commissioners, trusts and other local partners within all systems can make the progress needed on designing the right services and pathways for their local populations proactively together, and ensure they have the flexibility, capacity and resource to deliver them.