A report on the progress of the Transforming Care programme
by Sarah Leanney, R&D Researcher, Safe As Houses
2011 – Time for change
Ten years ago, the BBC’s Panorama programme exposed the abuse of patients at Winterbourne View, an independent hospital for people with learning disabilities and/or autism.
This prompted further inspections by the CQC of 150 hospitals and care homes for people with a learning disability where they discovered inadequate practice in in-patient services including poor person-centred care, limited appropriate activities and a lack of monitoring and learning from incidents of restraint.
2012 – The start of Transforming Care
In response to these findings, during December 2012 the Department of Health launched the policy Transforming Care: A National Response to Winterbourne View Hospital, stating that “Hospitals are not where people should live” and pledged that everyone inappropriately placed in hospital would move to community-based care as quickly as possible, and no later than 1 June 2014.
The policy was accompanied by the Winterbourne View Review: Concordat, an agreement signed by the NHS, statutory organisations and stakeholders committing themselves to the provision of appropriate services for people with learning disabilities.
2014 – Targets missed
In June 2014, when the target to move people to community care had been missed, NHS England commissioned Sir Stephen Bubb, CEO of ACEVO (Association of Chief Executives of Voluntary Organisations) to consider how a new national framework for learning disability services could be implemented.
His report, Winterbourne View - Time for Change (2014), recommended the urgent closure of inappropriate in-patient care institutions after finding that people with learning disabilities were still being placed in long-term institutional care rather than being supported within the community and that there were still more people being admitted to such institutions, than were being discharged.
His comment at that time was “That failing to deliver this new programme is simply not an option. Another deadline, another target, cannot mean another broken promise. There is a commitment to closures and to developing community care”.
2015 – A sense of urgency
Although his subsequent report, Winterbourne View - Time is Running Out (2015) found that although progress had been made, with the number of people being discharged from inpatient institutions greater than the number admitted, it said that the Transforming Care programme “Had not yet delivered tangible benefits in terms of new community facilities or closures”.
Also in 2015, the National Audit Office (NAO) published its report, Care Services for People with Learning Disabilities and Challenging Behaviour, which found that the Government had not met its central goal of moving people out of hospital by June 2014 because it “Underestimated the complexity and level of challenge in meeting the commitments in its action plan”. In response to this report the Chief Executive of NHS England announced that there would now be both a planned closure programme for NHS mental health hospitals and a change in commissioning practices for NHS inpatients within the independent sector, accompanied by a transition plan for the people with learning disabilities within these hospitals from 2016–17.
In October 2015, NHS England, in partnership with the Local Government Association (LGA) and the Directors of Adult Social Services (ADASS), published Building the Right Support, a national action plan created to ensure that with the right services in place people wouldn’t need to go into in-patient hospitals.
“Underestimated the complexity and level of challenge in meeting the commitments in its action plan”.
Building the Right Support – the new framework in 2015
Building the Right Support set a number of objectives for NHS England and the 48 newly created Transforming Care Partnerships, comprising CCGs, NHS England commissioners, and local authorities.
This new policy aimed to shift money from in-patient services to the community and was accompanied by £40 million of transformation funding from 2015/16 to 2018/19, to be matched by CCGs, and £20 million in capital funding.
It was intended that the development of a National Service Model, to be put in place by the end of March 2019, and the introduction of a new financial framework would help to resolve disagreements about who was responsible for funding a person’s support.
The National Service Model for Building the Right Support is made up of nine principles and that services should offer:
A good and meaningful everyday life
Person-centred, planned, proactive and coordinated care
Choice and control
Support from and for their families/carers as well as paid support and care staff
Housing
Mainstream NHS services
Specialist health and social care support in the community
Support to stay out of trouble
Treatment in a hospital setting for no longer than they need it
The success or failure of Transforming Care/ Building the Right Support would be measured by the policy’s ability to reduce the number of people detained for assessment and treatment in inpatient hospitals, and the following targets were set for 2019:
Overall, 35% - 50% of in-patient provision would close nationally with alternative care being provided in the community, thereby reducing the current number in hospital care from 2,600 to between 1,300 and 1,700 people
This would include a minimum of 45% – 65% of CCG commissioned inpatient capacity and 25% – 40% of NHS England-commissioned capacity that would close.
2019 - NHS Long-Term Plan
By the time NHS Long Term Plan, the new plan for the NHS to improve the quality of patient care and health outcomes, was published in January 2019 it was clear that Building the Right Support’s targets had not been met.
Although the Long-Term Plan recognised learning disabilities and autism as clinical priority areas, ambitions for the 35% - 50% reduction of inpatient provision had been postponed and the following new targets now being set were:
A reduction in in-patient provision of 50% by 2023/24, compared to 2015 levels.
No more than 30 people with a learning disability and/or autism in in-patient care per million adults.
No more than 12-15 children and young people with a learning disability and/or autism in in-patient care per one million.
An Implementation Framework was then created in June 2019 and set out how the NHS Long Term Plan would be delivered. Each local area should develop a five-year plan which, amongst many other commitments, should also include details on their share of the required further reduction in in-patient usage and beds, detail targeted funding, and capital investment to develop new housing options and suitable accommodation in the community as an alternative to inpatient care.
2019 – Criticism and a legal challenge
The announcement that NHS England would extend the deadline for closing inpatient beds within five years was heavily criticised by charities such as Mencap, with the figures at that time showing that:
2,295 people were still living in institutions, which was around 600 more people than the minimum target for reduction set by Government.
The number of children within these units had more than doubled since 2015, increasing to 250.
The number of reported incidents of restrictive interventions, e.g., physical restraint, for one month, was over 2,505, 820 of which were against children.
Of those in hospital, 1,330 (58%) had a total length of stay of over two years.
Dan Scorer, Head of Policy at Mencap, stated:
"Eight years on from the Winterbourne View scandal, where the public were made aware of the shocking abuses happening in an in-patient unit, it is clear that the Government has failed to deliver on its promise to ‘Transform Care’. Thousands of vulnerable people are being detained in institutions, often hundreds of miles away from their families, subject to physical restraint, overmedication and being kept in isolation. Their families are powerless to get them out. This is a domestic human rights scandal. We want to see them back home in their communities, living fulfilling lives with proper support. NHS England acknowledged its failures when it pushed back its deadline to 2023/24. We need to know urgently what the Government will do differently, having failed over the last eight years to release people unfairly kept in institutions.”
"We know we’re the lucky ones, being able to get him out, there are so many people we know still fighting to get their loved ones out after years and years.”
News of the delayed targets came as no surprise to Isabelle Garnett, the mother of an 18-year-old who had autism and a learning disability. She explained that:
“Matthew spent 15 months under section, during which time, his mental and physical health deteriorated catastrophically, and we became more and more concerned about his safety and wellbeing. Matthew thought he was in prison, and to us, it felt like he was being punished for being autistic. Rather than his behaviours being seen as a communication of what he might not be coping with, or struggling to understand, Matthew was over-medicated, secluded and restrained. It took many months of fighting for our son, to get him out of a secure mental health hospital. We know we’re the lucky ones, being able to get him out, there are so many people we know still fighting to get their loved ones out after years and years.”
Mencap called on the Government to shift its ‘short-sighted’ focus from simply closing down existing in-patient beds, and instead implement a national programme across departments to put long term and effective solutions in place to meet the needs of people with a learning disability and learn from failures to date. With the average weekly cost of in-patient care for an individual being around £3,500, in many cases it would cost less to support someone in the community rather than keep them in an in-patient unit. However, the money needed to set up local support and services was not being made available.
In February 2020, the Equality and Human Rights Commission took its first legal step over the ‘Inappropriate in-patient care’ of more than 2,000 people and launched a legal challenge against the Secretary of State for Health and Social Care over the failure to move people with learning disabilities and autism into appropriate accommodation.It sent a pre-action letter to Matt Hancock, arguing that the Department of Health and Social Care (DHSC) has breached the European Convention of Human Rights (ECHR).
The body stated that a report from Parliament’s Joint Committee on Human Rights in November found the human rights of many young people were being breached in mental health hospitals, and decried the “Horrific detention of young people with autism or learning disabilities”. They went on to say that:
“Following discussions with the DHSC and NHS England, we are also not satisfied those new deadlines set in the NHS Long Term Plan and Planning Guidance will be met. This suggests a systemic failure to protect the right to a private and family life, and right to live free from inhuman or degrading treatment or punishment”.
The DHSC were given 14 days to respond to the pre-action letter, or be given the alternative option of the legal process being suspended for three months if they agreed to produce a timetabled action plan detailing how it would address issues such as housing and workforce shortages at both national and regional levels. No updates or further information on this legal challenge have subsequently been published.
Who was to blame?
In total, the Transforming Care Partnerships asked the government for over £85 million so that they could change the way they were doing things and get people out of inpatient hospital care.
Many of the Transforming Care Partnerships put a lot of work into developing their implementation plans, with Humber Transforming Care Partnership being a perfect example. Each partnership was also required to submit details of its current and proposed spending on in-patient beds and details of the transformation funding that they would need in order to deliver the changes needed.
Not all the partnerships submitted details of the transformation funding that they would need, however the majority did, as the graph below shows.
Most of the Transforming Care Partnerships didn’t get the money that they asked for and Mark Brown from Rightfullives, a creative campaign to explore the Human Rights of people with autism and learning disabilities, believes that the gap between the funds that were bid for, and the funds that were received, would have had a significant negative effect on their ability to implement Building the Right Support.
Addressing the All-Party Parliamentary Group on Complex Needs he stated that “The government and NHS England underestimated the amount of work that needed to be done and didn’t provide the Transforming Care Partnerships with the money and resources they needed to do the work” and that “Cuts to social care funding made things more difficult for Local Authorities”.
The most recent evaluations commissioned by NHS England suggest that although it failed to meet the objectives that it set and the difficulties in making it work, Building the Right Support is a good policy with lots of positive parts to it, and that despite the lack of adequate funding, the Transforming Care Partnerships appear to have made progress in some important areas.
Unfortunately, neither Transforming Care or Building the Right Support were mentioned in the 2019 NHS Long Term Plan even though the struggle to get people out of inpatient hospital continues.
Here and Now
As of October 2021, and two years on from the planned deadline:
There are still 2,040 people in specialist-in patient settings in England, a net reduction of 30% on the inpatient number in March 2015.
Following BBC’s Panorama investigation in 2019 Whorlton Hall in County Durham, which treated patients with severe learning difficulties and autism, was closed down following video footage showing staff physically and emotionally abusing vulnerable people in their care. The CQC were criticised for not acting on concerns of whistleblowers dating as far back as 2015.
Following a CQC inspection in August 2020 Cygnet Yew Trees, a private hospital providing care for vulnerable adults with learning disabilities and mental health problems in Essex, was closed for failing to keep residents safe, with evidence being found of inappropriate staff behaviour including physical and emotional abuse.