Action needed to tackle learning disability stigma

NHS Providers has called for immediate action to tackle stigma and the historic underfunding of services for people with a learning disability and autistic people.

A new report, Getting it right for everyone, argues that the longstanding inequity in the development, commissioning and delivery of these services has harmed the health and well-being of these vulnerable groups of individuals, resulting in reduced life expectancy and – in extreme cases – increased risk of abuse.

According to Care Quality Commission, most learning disability and autism services are providing people with good care, with some rated as Outstanding. A key objective of the report is to share examples of high quality care across the NHS.

Based on extensive interviews with the leaders of seven trusts in the NHS providing good or outstanding care, the report sets out in detail the common themes behind high quality care, offering detailed case studies of how they have succeeded. They include: working in collaboration with service users and people with lived experience to plan and, in some cases, deliver services; ensuring care is holistic, taking into account physical health needs as well as people’s wider personal, social and employment needs; services delivered by skilled staff from a range of disciplines with the right values and behaviours; and a collaborative approach by teams within trusts and with local system partners including commissioners, social care and housing providers.

It calls for immediate action to address the historical inequities for people with a learning disability and autistic people, and to improve their access to high quality care and support. This should include: immediate action to tackle stigma associated with learning disabilities and autism; more transparent funding for the sector to ensure the money reaches the frontline services that need it most; sustainable levels of funding across health, social care and wider public services including high quality housing where people want to live; promotion of careers in the sector and support for training and recruitment; and support for providers to develop new ways of providing more care closer to home in partnership with service users and experts by experience.

Saffron Cordery, deputy chief executive of NHS Providers, said: “People with a learning disability and autistic people have faced longstanding, profound inequity in the care and support they receive. This has often damaged their health and wellbeing, life expectancy and in extreme cases has placed them open to abuse.

“Alongside these challenges we see increasing demand, workforce shortages and inadequate 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.

“Yet it’s clear that most disability and autism services are providing people with good care, and there is no doubting the commitment of trust leaders to work with service users to ensure high quality, person centred, holistic support. The examples in this report show there are real opportunities to deliver change. But this will require renewed determination and concerted action from government, NHS national bodies, providers and their local partners. Beyond that, we need to see a change of mindset, to raise ambitions and deliver genuine and lasting change.”