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NHS Providers call for real change for people with a learning disability

A new report by NHS Providers has called on the health service and wider community to take immediate action to tackle stigma and the historic underfunding of services for people with a learning disability and autistic people.

As part of their new report, Getting it right for everyone: Meeting the needs of people with learning disability and autistic people in NHS services, NHS Providers reflected on a longstanding inequity in the commissioning, delivery and development of services for these groups and how it has impacted the health and wellbeing of vulnerable groups of individuals – including at times reduced life expectancy and, in some more extreme cases, an increased risk of abuse.

The report does however seek to highlight the fact most learning disability and autism services are providing good care, as ratified by CQC inspections, with some services being rated as outstanding.

A key objective highlighted of the report is to share examples of high quality care across the NHS. Extensive interviews have been carried out with the leaders of seven trusts in the NHS providing good and outstanding care, to help set out in detail the common themes behind high quality care provision.

These 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
  • a collaborative approach by teams within trusts and with local system partners including commissioners, social care and housing providers.

The report also highlights significant challenges which have emerged in the independent sector, representing slow progress in places towards goals of improving the availability of consistent, high quality care for individuals from these vulnerable groups.

NHS Providers, as a result, have called for immediate action and further support to address these inequities in access to high quality care for people with a learning disability and autistic people. This support includes:

  • 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
  • support for providers to develop new ways of providing more care closer to home in partnership with service users and experts by experience.

Deputy Chief Executive of NHS Providers, Saffron Cordery, 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.”

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