Our Letter to the Equality and Human Rights Commission

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Initial reply November 5th 2018

Reply Nov 5th

Rebecca Hilsenrath
CEO
Equality and Human Rights Commission
Arndale House
The Arndale Centre
Manchester
M4 3AQ

11th October 2018,

Dear Rebecca,

We the undersigned are writing to the Equality and Human Rights Commission to outline our continued concern over the rights abuses of people with learning disabilities and/or autism who are living in inpatient units. We call on the Commission to use its statutory powers to gather evidence about the system of inpatient care for people with learning disabilities and autism in England. In 2011, A BBC Panorama documentary exposed the persistent abuse of inpatients with learning disabilities and autism at the private Assessment and Treatment Unit Winterbourne View, leading to public outrage and resulting in several criminal prosecutions. Since the Winterbourne View abuse scandal, successive governments have committed to moving people with learning disabilities and autism out of inpatient care and into community-based support. In response to this scandal, NHS England initiated the Transforming Care Programme, with the aim of transforming service provision for people with learning disabilities and autism by April 2019. At present, NHS England remains committed to closing 900 learning disability inpatient beds and reducing the number of inpatients by 35% by the end of March 2019. However, many in the sector are doubtful that these targets will be met and concerns have been raised that a rush to try and deliver on these aims 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:

  1. 1. People with learning disabilities and autism are detained in hospital when they could and should be living with support in the community, due to a lack of appropriate community based support provision and wrap around provision, such as housing.
  2. 2. People living in inpatient settings are experiencing abuse, maltreatment and neglect. This includes rising levels of restraint (both physical and chemical) and the use of seclusion.
  3. 3. People living in inpatient units have limited opportunities for self-expression or to pursue personal interests.
  4. 4. 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 clinically obese, developing diabetes whilst in hospital. Bethany had parts of a biro pen stuck in her – 3 months ago she self-harmed with the pen and the hospital had not removed the pen from her arm until there was a public outcry because they deemed it is too dangerous for staff to enter her seclusion room to remove it. Bethany remains under these conditions in St Andrew’s hospital, despite the fact that her psychiatrist believes she could live in the community with appropriate support. Bethany’s story is just one that underlines the woeful failings in inpatient care provision for people with learning disabilities and autism and wider failings in commissioning appropriate support to live independently in the community.

The most recent figures on the demographics of people with learning disabilities and autism in hospital indicate that:
- 2,375 people were in inpatient settings
- 1,390 (59%) had been in hospital for over 2 years
Data is not available on distance travelled in the most recent figures, but the previous data set cited that 41% of inpatients travelled over 50km to their placement.

We contend that there are serious issues in service provision within inpatient settings, as well as in commissioning to move people into community-based support, which are permitting regular violations of people’s rights under the Equality Act 2010 and Human Rights Act 1998.
We ask the Equality and Human Rights Commission to use its statutory powers to open an inquiry into the system of inpatient care for people with learning disabilities and autism in England, including the role of individual providers, clinical commissioning groups, local authorities and NHS England. We believe evidence-gathering is urgently needed to understand the extent of rights abuses within this system and to determine whether responsible bodies are meeting their obligations in relation to the Transforming Care Programme.
We anticipate that the Commission would be in a position to undertake further action against NHS England in failing to deliver on the Transforming Care commitments by April 2019.

We the undersigned are made up of families with experience of the system of inpatient care for people with learning disabilities and autism, as well as campaigners, academics, social enterprises and charities who wish to see greater transparency and accountability within the system. We will be pleased to work with the Commission to support any action it should choose to take in relation to the concerns we have outlined.

Yours faithfully,

Rightful Lives (campaign to highlight the human rights of people with learning disabilities)

julienewcombe@rightfullives.net
www.rightfullives.net
and the following organisations;

1st Enable
Aldingbourne Trust
Appleman Legal
Article 39
Association for Real Change
Autism Rights Group Highland
Beyond Limits
Bright Futures School
Bringing Us Together
BSOP
Care Management
Certitude
Challenging Behaviour Foundation
C-Change Scotland
CHANGE
Choice Support
Citizens Advice Sheffield
Clear Autism
Dimensions
Disability Rights UK
Dudley Voices for Choice
Enough is Enough
Foundation for People with Learning Disabilities
Future Directions
Grapevine
Heart into Help
Hft
IBK Initiatives
I'm Out of Here
In Control
Independent Advocacy
INQUEST
JK Training
Learning Disability England
Lets for Life
Lewisham Nexus Services
Lewisham People's Parliament Representatives
Ling Trust
Lives Unlimited
Macintyre Charity
Mencap
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
Paradigm
Real Life Options
Respond
Seeability
SEND National Crisis March
Shared Lives Plus
Solihull Action Through Advocacy
Speak Up Rotherham
Summit Services
Three Cs
Together All are Able
Triangle
Voluntary Organisations Disability Group (VODG)
Voyage Care
Yarrow

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;

Adam Knowles
Adriane Campbell
Aidan Perry
Aideen Jones OBE
Aisling Duffy, CEO Certitude
Alanna Saudade
Alex Evans
Alex Newcombe
Alexandra Gbedemah
Alicia Wood
Alison Dugmore
Ann Earley
Anne Davies
Annie Fergusson
Anthony Monaghan
Aodhan O'Cuana
AsifAMHP
Ben Glass, psychiatric survivor
Beryl Newcombe
Beth Lycett
Beth Morrison
Bethany's Dad
Beverly Dawkins
Brenda Fissendan
Bryan Benetton
Carole Mathurin
Caroline Hunter
Caroline Kick
Cathy Wicks
Cheryl Anderson
Chris Hebden MBE
Chris Mc Carrick
Christian Campbell
Christian Raphael MBE
Christine Papalabropoulos
Christine Stringer
Claire Hall
Claire Ryan
Clare Roberts
Clare Skidmore
Clare Wightman, CEO Grapevine
Courtney Evans
Dale Kelso
Daniel Marsden
Danuta Gillespie
Darren Ashman
David Newcombe
Deanne Shaw
Deb Aspland
Deb Evans
Debbie Robinson
Debra Oliveri
Denise Needleman
Doreen Kelly
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
Dudley Rickard
Dunstan Rickard
Ed Parker
Eddie Parker
Eden Norris
Errol Kerr
Elaine Clarke
Ellie Mole
Elizabeth McGlone
Emma Dalrymple
Emma James-Jenkinson
Emma Keyworth
Emily Tippins
Ellie Sibbald-Perkins
Eve Whiteman
Fiona Taylor
Fleur Bressat
Frances Steepe
Gail Hanrahan
Gareth Mason
Gary Bourlet, Founder Learning Disability England
Geoff Doncaster
Gill West
Gina Regan
Hazel Griffiths
Helen Ashby
Helen Cherry
Helen Meneghello
Henry Iles
Ian Jones
Ian Kick
Ian Penfold
Isabelle Garnett
Isobel Cuthbertson Hall Smith
Jackie Cookson
Jackie Stillman
Jade Leanne Homer
James O’Rourke
Jamie Andrade- Martinez
Jamie Newcombe
Jamie Peate
Jan Walmsley
Jane Crittenden
Janet Seamer
Janice Mclaughlin
Janis Griffiths
Jayne Keary
Jayne Knight
Jayne Moore
Jennie Sibbald
Jenny Morris
Jenny Walker
Jeff Dawson
Jimmy Graham
Jo Hogg
Jo Hough
Jo Whitehead
John A D Palmer
John Anderson
John Hails
John Sibbald
Josephine Sirotkin, ESRC Doctoral Researcher, University of Leeds
Jordan Creed, Harrow Mencap
Jules Hipkiss
Julia Dawson
Julie Harris
Julie Newcombe, Co-Founder Rightfullives
Julie Stansfield, CEO In Control
Julie Tippins
Karen Kick
Karen Knowles
Kate Chate
Kate Mercer
Katie Clarke
Katrina Rose
Katy Tippins
Keith Sibbald
Kevin Hall
Kim Motton
Lauran Doak
Laurie Morgen, Inside Autism/Outside the Box
Lawraine Hails
Lawrence Grady
Leo Andrade
Leslie Superson
Linda Johnson
Lindsey Brandon
Linnet Macintyre
Lisa Hopkins, CEO Seeability
Lisa Perry
Lisa Richardson
Lisa Watchorn
Lorraine Lish
Lucy Hirst-Brown, MD Blue Giraffe Vision
Luke Mc Carrick
Lyn Roberts
Lynn James-Jenkinson
Lynne Mc Carrick
Madeline Cooper- Ueki
Mags Kelly
Mandy Johnson
Manuel Martinez
Marianne Selby-Boothroyd
Marion Rapson
Mark L Brown, Co-Founder Rightfullives
Mark Lever, CEO National Autistic Society
Mark Neary, Co-Founder Rightfullives
Mary Parker
Maureen West
Michelle Hickmott
Miles Lawson
Miray Kester
Narender Kaur
Neil Crowther
Neil Keyworth
Nick Perkins
Nicola Bartzis
Nicola Clark
Nigel Devine
Nina Ni
Pam Hickmott
Pam Robertson
Paul Gillespie
Paul Scarrot
Paula McGowan
Perry Collins
Peter Austin
Phil Kelly
Pippa Sibbald
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
Rachel Smith
Richard Evans
Robin Garnett
Robert Stillman
Ronnie Treston
Rosalind Grainger
Rosemary Fretwell
Rosie Graham
Roy Hickmott
Ruth Collier- Large
Ruth Homer
Sally Warren
Sam Sly
Samantha Clark, CEO Learning Disability England
Sarah Burslem, CEO of Macintyre Charity
Sarah Dawson
Sarah Maguire
Sarah Storer
Scott Hastings
Sean Kelly
Sheila Handley
Simon Cottingham
Simon Cramp
Simon Tovey
Sophie Kick
Stella Waterhouse
Stephen Andrade- Martinez
Steve Perry
Steven Neary
Sue Cousins
Sue Jones
Sue Sibbald
Susan Llewelyn
Susi Petherick
Terence Whitehouse
Tony Hickmott
Tracey Rogers
Vicki Raphael
Vivien Cooper OBE
Wayne Keary
Wendy Burt
Wendy Wilson
William Runswick-Cole
Zoe Gillespie
Zoe Thompson

And the following recently added signatories

Gillian Douglass
Peter Coleman
Dawn Hillery
Ian Denton
Euan Macleod
Mark Stanton, NAS Board of Trustees
Giselle Robertson
Alexander Kear
Samantha Harley-Pesce
Alison Giraud-Saunders
Anna Goldberg
Annie Bishop
Patricia O’Connor
Scott Watkin, BEM
Delia Smith, Mencap support worker
Christine Rose, Director Active Support Solutions
Kerry Gibbs
Annie Bannister
Carole Birtwhistle
Lisa Lenton
Matthew Brockett
Elizabeth Arenas Thomas
Sylvia Smith
Graham Smith
Richard Denny
Gary Cochrane
Deborah Coles, Director INQUEST
Sara Brockway
Margaret Collins
Rachel O’Brien, NUS Disabled Students Officer
Xan Brooker
James Murphy - psychiatric institution survivor
Susan Keller
Lisa Treacey
Steven Treacey
Jo Varela
Teresa Halliday
Katja Huijbers
Dr Sally Morgan
Rhidian Hughes
Gail Ranford
Keith Ranford
Laura Fitzgerald
Sophie Ranford
James Gibson
Tim George
Morna Boulbin
Robin Vacquier
Matthew Farley
Holly Chester
Katie George

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:
julienewcombe@rightfullives.net