Transforming Care - history and future

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

• May 2011, BBC Panorama documentary exposes abuse at Winterbourne View. Winterbourne is closed, and criminal investigations follow.
• June 2012, CQC Publish findings from their Learning Disability Review. 48% of them did not meet the CQC’s standards for welfare, care, and safeguarding.
• December 2012, The Department of Health publish Transforming care: A national response to Winterbourne View Hospital. This report committed a programme of action (and £2.86m). It set targets to review every person with a learning disability in an inpatient setting by June 2013, with everyone who was inappropriately placed to be moved out by June 2014.
• January 2013, the Local Government Association (LGA)-led Joint Improvement Programme was set up and tasked with delivery of the Transforming Care actions.
• June 2014, First set of Transforming Care targets missed.
• 2014, The Transforming Care and Commissioning Steering Group, chaired by Sir Stephen Bubb published Winterbourne View- Time for Change: Transforming the commissioning of services for people with learning disabilities and/or autism highlighting the lack of progress.
• February 2015, The National Audit Office published its first and highly critical report on the lack of progress made by the Transforming Care programme. In evidence given to the Public Accounts Committee (PAC) in April, Simon Stevens (Chief Executive of NHS England) commits to developing a programme to reduce the number of people with learning disabilities in inpatient beds.
• October 2015, NHS England, LGA and ADASS (Association of Directors of Adult Social Services) publish Building the Right Support (a commitment made to the PAC) which set themselves new targets of moving 35-50% of people with a learning disability and/or autism out of institutions and into the community by March 2019.
• 48 Transforming Care Partnerships (TCPs) are established as the mechanisms to drive change, tasked with developing plans to deliver the Building the Right Support commitments.
• January 2017, Christine Lenehan publishes These are our children.
• 2017, The National Audit Office published a second inquiry into the programme which concluded that a number of unresolved complex challenges remained, although there was now a “solid basis for the programme”.
• November, 2017, Christine Lenehan publishes Good intentions, good enough? A review of the experiences and outcomes of children and young people in residential special schools and colleges.
• January 2018, Ray James appointed NHSE lead for Transforming Care.
• January 2019, New TC targets are incorporated into the NHS Long Term Plan. This extended the deadline again and reduced it to the lower end of the original target: 35% of people would be moved into the community by March 2020, and 35-50% by March 2024.
• March 2019, Targets outlined in Building the Right Support are missed.
• May 2019, BBC Panorama uncovers physical and psychological abuse at another private hospital, Whorlton Hall, originally part of the same chain as Winterbourne View Hospital.
• May 2019, The Children’s Commissioner publishes report Far less than they deserve: children with learning disabilities or autism living in mental health hospitals.
• November 2019, Joint Committee on Human Rights publishes report criticising the violation of human rights of people with learning disabilities and autistic people in inpatient units.
• November 2019, Secretary of State for Health and Social Care announces every person in an inpatient unit with a learning disability and/or autism will receive a review of their care within the following twelve months.
• March 2020, the first set of targets outlined in the NHS Long Term Plan are missed.
• June 2020, Joint Committee on Human Rights publishes second report on Human Rights violations.
• October 2020, the government-commissioned CQC review of restraint, segregation and seclusion in care settings is published: Out of Sight – Who cares.
• December 2021, Ray James tenure as Transforming Care lead ends and the role is downgraded to part time.
• June 2021, Barbara Keeley MP led a debate in Westminster Hall on the 10th anniversary of the Winterbourne View hospital scandal and progress on moving people with a learning disability and/or autism out of in-patient units. You can watch the debate here.
• July 2021, ‘The treatment of autistic people and people with learning disabilities’ is published by the House of Commons Health and Social Care Committee. Read the report here (parliament.uk)
• July 2022, ‘The treatment of autistic people and people with learning disabilities: Government Response to the Committee’s Fifth Report of Session 2021-22’ is published Read the report here (parliament.uk)

For more detail on the History of Transforming Care, please see our 2018 briefing paper, which was 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 June 2011, the CB-NSG produced Time for Action and Time for Action (Easy Read) as a response to the Panorama documentary.
• 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.