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To: The Rt Hon Matt Hancock MP
Secretary of State for Health and Social Care
House of Commons, London SW1A 0AA
Dear Mr Hancock,
We were encouraged by your announcement on Tuesday ahead of the publication of the Learning Disabilities Mortality Review LeDeR Programme report, that ‘every single patient’s case will be independently reviewed after reports that vulnerable people are being failed’.
The Government has set out plans to improve care for people with autism and learning disabilities based on the recommendations from the report. These plans include moving people with learning difficulties and autistic people out of Assessment and Treatment Units and mental health hospitals.
The Government is also looking at how more people with learning difficulties can live in their own homes – under the Transforming Care Programme.
We are extremely concerned and angry that targets to date have not been met and people continue to be admitted to these units and continue to suffer.
The Government is now setting up “a new working group for learning disabilities and autism, bringing together experts, clinicians, parents and carers to develop a new model of care.”
The Government has left out people with learning difficulties and autistic people from this group. The Government must listen to and include People with learning difficulties and autistic people if it is to have any credibility.
Under the UN Convention of Rights for Persons with Disabilities, Article 4, 33 and comment 7 says that the Government must involve people with learning difficulties and autistic people when making policies and decisions about us.
We are writing to ask you to start talking and listening directly to:
• People with learning difficulties and autistic people who have been or are in ATUs and Mental Health Hospitals
• Self-Advocacy and other Speaking Up groups run and controlled by people with learning difficulties and autistic people
• Activists with learning difficulties and autistic people
campaigning around ATU and mental health hospitals
• Care and Treatment Review’s Expert by Experience panel members with learning difficulties and autistic people
• Peer advocates with learning difficulties and autistic people acting as advocates for patients in hospitals
This means that the Government must find out from People with learning difficulties and autistic people what helps us be well, happy and safe in the community and stop us going into mental health hospitals and Assessment and Treatment Units.
The UNCRPD requires People with learning difficulties and autistic people to be members of the group that will look at good ways of providing care for them.
It also means asking us about what changes we want in Mental Health and other laws that will support our right to live in the community.
Nothing about us without us!
Andrew Lee, Director of People First Advocacy
Simone Aspis, Changing Perspectives