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Transforming Care - history and future

This page askes the question 'What is Transforming Care?' It includes a summary of the history of Transforming Care, and details of how the CBF has been involved.

What is Transforming Care?

In May 2011, BBC Panorama exposed shocking abuse taking place at Winterbourne View Hospital, a private hospital for people with learning disabilities  The scandal exposed significant systematic failures: people with learning disabilities were being channelled into inpatient services for “assessment and treatment” – not because they needed to be there but due to a failure of the right community support –  often at high financial cost, and which delivered poor outcomes. Winterbourne View Hospital was closed and the Care Quality Commission (CQC) carried out a national review of similar services, which found 48% of them did not meet the CQC’s standards for welfare, care, and safeguarding.

 

 

At the time of Winterbourne View, there were over 3,000 people with learning disabilities in ATUs.

 

 

 

 

In response, the Government promised to address these failings and in 2012 set out its plan to ‘Transform the Care’ of “people with learning disabilities or autism who also have mental health conditions or behaviours viewed as challenging.”

At the heart of the programme is ensuring that people with a learning disability and autistic people who also have mental health conditions or behaviours described as challenging are supported to get the right support and services to meet their needs in the community. For individuals who are inappropriately in inpatient services, the aim is to ensure they are discharged and return to their communities with the right support and services in their local areas. The aim is to stop spending money on services that are harming people, and invest it into high quality community support.

History of Transforming Care

For more detail on the History Transforming Care, please see our paper prepared for the Challenging Behaviour National Strategy Group.

What have we been doing?

The Government and the NHS have come under scrutiny and criticism from people with learning disabilities and autistic people, families and charities for their failure to meet the Transforming Care targets.  The CBF has worked in partnership with and supported individuals with learning disabilities, autistic people and their families, individuals and organisations to continue to campaign for change and hold the government to account, whilst highlighting how to provide the right support, at the right time in the community for children, young people and adults.

This has included the development of a Campaigns Families group which was set up by the Challenging Behaviour Foundation and Mencap after the abuse exposed at Winterbourne View.  Since its inception, the Campaign Families group have continued to influence and inform the Transforming Care work and keep the profile of people with learning disabilities whose behaviour challenges high.

Some of the work co-produced by families, the CBF and other organisations includes:

  • In 2012, CBF and Mencap published a report ‘Out of Sight’ which set out the systemic issues and changes needed.
  • In 2014 we worked with families to publish a further report ‘Winterbourne View: The Scandal Continues‘ revealing the extent to which the Transforming Care programme had failed to meet its targets and the human cost of this failure.
  • In 2016, CBF, the National Autistic Society and Mencap interviewed families for the ‘Transforming Care: Our Stories‘ report setting out serious failings of care including individuals being given high levels of anti-psychotic medication when no psychosis was present, unnecessary use of restraint and a lack of staff trained in autism.
  • In 2021, the CBF, Mencap, Rightful Lives and Learning Disability England co-produced a report on Transforming Care and its impact on individuals and families for the Health and Social Care Committee. Read the evidence submitted.
  • In May 2021, a group of families with relatives who were at Winterbourne View published a collection of family stories Tea, smiles and empty promises, to mark the 10 year anniversary since BBC Panorama exposed abuse at Winterbourne View hospital and reported on the lack of progress in Transforming Care. A short film, highlighting some of the stories shared in the report, was also produced.

Individuals, families and charities including the CBF will continue to campaign for the transformation of care, and the provision of the right support, at the right time and in the right place for children, young people and adults with learning disabilities whose behaviour challenges. Further information can be found on our Transforming Care data page, which summarises progress towards the current targets and highlights concerning trends.

Related pages

Challenging Behaviour National Strategy Group

Challenging Behaviour National Strategy Group

The Challenging Behaviour Foundation formed the Challenging Behaviour - National Strategy Group to break down the barriers to enable children and adults to get the right support to have a good life. 

Transforming Care data

Transforming Care data

Each month data is published on children, young people and adults with learning disabilities and/or autism in inpatient units on the NHS Digital website. This data is published as part of the Mental Health Services Data Set and the Assuring Transformation data set.

News

News

Read our news stories and statements relating to Transforming Care. Search for 'CBF Statements' to get the main announcements and 'Transforming Care' for analysis of the monthly data.