Our Letter to the Equality and Human Rights Commission - Easier Read
Equality and Human Rights Commission
The Arndale Centre
11th October 2018,
We are writing to the Equality and Human Rights Commission because we are worried about the human rights of people with learning disabilities and/or autism who are living in inpatient units.
We call on the Commission to use its powers to gather evidence about inpatient care for people with learning disabilities and autism in England.
In 2011, A BBC Panorama documentary showed the abuse of inpatients with learning disabilities and autism at the private Assessment and Treatment Unit Winterbourne View. This lead to public outrage and resulted in several criminal prosecutions.
Since Winterbourne View governments have tried to move people with learning disabilities and autism out of inpatient care and into community-based support and NHS England started the Transforming Care Programme to help make this happen.
However, many in the sector don't think the Transforming Care targets will be met and some people are worried that a rush to try and meet the targets will see people hastily moved out of hospital into inappropriate support.
We are concerned that the rights of many people with learning disabilities and autism living in inpatient units are not being upheld:
- People with learning disabilities and autism are kept in hospital when they could and should be living with support in the community.
- People living in inpatient settings are experiencing abuse and neglect.
- People living in inpatient units find it difficult to get their voices heard.
- People are being placed in hospital long distances from their friends, family and local community.
On 2 October 2018, BBC Radio 4’s File on Four programme aired an episode on Transforming Care.
This included Bethany’s story. Bethany is a young woman living in seclusion in St Andrew’s hospital. Bethany is fed through a metal hatch and is over-weight and has got diabetes whilst in hospital.
Bethany had parts of a biro pen stuck in her – and the hospital had not removed the pen from her arm until there was a public outcry because they thought it was too dangerous for staff to enter her room to remove it.
Bethany remains at St Andrew’s hospital, despite the fact that her psychiatrist believes she could live in the community with appropriate support.
Bethany’s story shows us how bad it can be for people with learning disabilities and autism and that the system is failing to commission appropriate support to live independently in the community.
The most recent figures on the numbers of people with learning disabilities and autism in hospital show that:
- 2,375 people were in inpatient settings
- 1,390 (59%) had been in hospital for over 2 years
- new information is not available on the distance people have to travel to their hospital but older information shows that 41% of inpatients travelled over 50km.
We think that there are serious issues with inpatient settings, which damage people’s rights under the Equality Act 2010 and Human Rights Act 1998.
We ask the Equality and Human Rights Commission to use its powers to open an inquiry into inpatient care for people with learning disabilities and autism in England.
We hope that the Commission would be in a position to take action against NHS England in failing to deliver on the Transforming Care commitments by April 2019.
We are people with learning disabilities, families, campaigners, academics, social enterprises and charities who wish to see more accountability within the system.
We will be pleased to work with the Commission to support any action it wants to take.
Rightful Lives (campaign to highlight the human rights of people with learning disabilities)
and the following organisations;
Association for Real Change
Autism Rights Group Highland
Bright Futures School
Bringing Us Together
Challenging Behaviour Foundation
Citizens Advice Sheffield
Disability Rights UK
Dudley Voices for Choice
Enough is Enough
Foundation for People with Learning Disabilities
Heart into Help
I'm Out of Here
Learning Disability England
Lets for Life
Lewisham Nexus Services
Lewisham People's Parliament Representatives
Mental Health Resistance Network
My Great Life CIC
My Life, My Choice
National Autistic Society
National Development Team for Inclusion (NDTI)
Oxfordshire Family Support Network
Real Life Options
SEND National Crisis March Shared Lives Plus
Solihull Action Through Advocacy
Speak Up Rotherham
Together All are Able
Voluntary Organisations Disability Group (VODG)
The people, families and supporters who have experienced the ATU system, and those families who are not named because they have been restricted by a court from speaking publicly about their relative’s situation;
Aideen Jones OBE
Aisling Duffy, CEO Certitude
Ben Glass, psychiatric survivor
Chris Hebden MBE
Chris Mc Carrick
Christian Raphael MBE
Clare Wightman, CEO Grapevine
Dr Angharad Beckett University of Leeds
Dr Christiane Pollock
Dr Damian Milton
Dr David Newman, Clinical Director Learning Disabilities Sheffield Health and Social Care NHS FT
Dr Jane Dalrymple
Dr Lucy Burke
Dr Lucy Series, School of Law and Politics, Cardiff University
Dr Lynn Brady
Dr Melanie Bruce
Dr Noelle Blackman
Dr Pippa Murray
Dr Sam Smith
Dr Sara Ryan
Gary Bourlet, Founder Learning Disability England
Isobel Cuthbertson Hall Smith
Jade Leanne Homer
Jamie Andrade- Martinez
John A D Palmer
Josephine Sirotkin, ESRC Doctoral Researcher, University of Leeds
Jordan Creed, Harrow Mencap
Julie Newcombe, Co-Founder Rightfullives
Julie Stansfield, CEO In Control
Laurie Morgen, Inside Autism/Outside the Box
Lisa Hopkins, CEO Seeability
Lucy Hirst-Brown, MD Blue Giraffe Vision
Luke Mc Carrick
Lynne Mc Carrick
Madeline Cooper- Ueki
Mark L Brown, Co-Founder Rightfullives
Mark Lever, CEO National Autistic Society
Mark Neary, Co-Founder Rightfullives
Professor Chris Hatton, Lancaster University
Professor Daniel Goodley, Director of Research, The University of Sheffield
Professor David Abbott, University of Bristol
Professor Katherine Runswick- Cole, Professor of Education, The University of Sheffield
Professor Rebecca Lawthorn, Professor of Community Psychology, Manchester Metropolitan University
Professor Richard Huggins
Ruth Collier- Large
Samantha Clark, CEO Learning Disability England
Sarah Burslem, CEO of Macintyre Charity
Stephen Andrade- Martinez
Vivien Cooper OBE
And the following recently added signatories
Mark Stanton, NAS Board of Trustees
Scott Watkin, BEM
Delia Smith, Mencap support worker
Christine Rose, Director Active Support Solutions
Elizabeth Arenas Thomas
Deborah Coles, Director INQUEST
Rachel O’Brien, NUS Disabled Students Officer
James Murphy - psychiatric institution survivor
Dr Sally Morgan
cc. Elizabeth Prochaska, Legal Director, Equality and Human Rights Commission
Rt Hon Harriet Harman QC MP, Chair of the Joint Committee on Human Rights
If you would like to add your name to the list of people supporting the aims and objectives of this letter email: