Letter to The Independent

As published in The Independent: View here

Dear Editor,

Half a billion pounds per year of public money is being spent on inpatient units for people with a learning disability and autistic people. This money is buying the wrong kind of care in settings where we know people are at an increased risk of abuse and neglect. This must end and instead better care delivered where people live to achieve better outcomes and to give people better lives.

Tireless campaigning by people with a learning disability, autistic people, and families of children and adults shut away in inpatient units has seen the Government now commit to publishing an Action Plan in the first part of 2022: setting out the actions that will be taken across social care, health, housing, and education to meet their latest target of closing 50% of inpatient beds by March 2024.

The Government has repeatedly promised to ‘Transform Care’ for people with a learning disability and autistic people since the Winterbourne View scandal in 2011. Yet this shocking human rights scandal continues – where people with a learning disability and autistic people are being locked away in inpatient mental health units, often for many years – because of a lack of the right community support and not because the person actually needs inpatient mental health care.

Early last month an independent review was published into the death of Clive Treacey, a man with a learning disability who died in an inpatient unit in 2017. This also came after a Safeguarding Adults Review published on 9^th September into the deaths of three young adults with a learning disability and/or a diagnosis of autism, between 2018 and 2020 at Cawston Park inpatient unit in Norfolk. Both these reviews are devastating, shocking and show clearly how the individuals involved have been so fundamentally failed by the system supposed to be caring for them.

The recommendations made in these reviews and numerous other reports over the last ten years – including by the Joint Committee on Human Rights (2019) as well as reports by the Health and Care Select Committee and the review into seclusion chaired by Baroness Hollins both published last summer – are consistent. They could not emphasise more strongly the need for the development of the right support, services and suitable housing in the community to support individuals with a learning disability and autistic people and their families, and prevent inappropriate admission or readmission to inpatient units.

The latest NHS data shows there are currently 2,085 people with a learning disability and/or who are autistic in inpatient units, including 200 children. The average length of stay of those currently in units is 5.4 years, with 355 people having been in more than 10 years. Recent media investigations have shown a significant number have been in for over 20 years, and that 75 people have died in inpatient units since 2015.

In 2021 alone there were at least 1,285 admissions of people with a learning disability and/or who are autistic to inpatient units. There have been at least 37,380 incidences of restrictive interventions such as chemical and physical restraint in inpatient units (this is likely to be a huge underestimate due to low reporting from inpatient providers). This cannot continue.

The Government’s Action Plan must be a credible, evidence based, robust and detailed plan which redirects the half a billion pounds currently being spent on the wrong type of care and takes immediate steps to develop the right community support to enable people with a learning disability and autistic people to lead fulfilling lives in the community and to end this scandal once and for all.

Yours sincerely,

Jackie O’Sullivan, Executive Director, Mencap

Viv Cooper OBE, Chief Executive, The Challenging Behaviour Foundation

Julie Newcombe, Co-Founder, Rightful Lives

Caroline Stevens, Chief Executive, The National Autistic Society (NAS)

Wendy Burt, Scott Watkin BEM, Jordan Smith, Co Chairs Members’ Representative Body, Learning Disability England (LDE)

Support from the CBF  

Family Support Service  

If you have been affected by any of the issues raised in this statement, you can call the Family Support Serviceon 0300 666 0126  

Or email us at support@thecbf.org.uk  

We are open at the following times:  

Monday – Thursday: 9am – 5pm 
Friday: 9am – 3pm  

We offer information about challenging behaviour to anyone who provides support to a child, young person or adult with a severe learning disability. We can also signpost you to other specialist organisations and sources of information.  

Please note we are a small support service so you may not be able to get support straight away. We will support families with urgent concerns as a priority.  

Professionals are also welcome to contact the CBF.

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