ACT is grateful to Margaret Flynn for writing this article for Safeguarding Adults Week 2021.
Margaret has worked as a researcher since the 1980s when she interviewed the former patients of long stay hospitals. She has a long standing interest in the lives of people with learning disabilities and in what is successful in keeping all of us safe. She is especially concerned with people without families or friendship networks.
Margaret has a brother with a learning disability. They have written a children’s book about what having a learning disability is like. Margaret has also contributed to the Books Beyond Words series pioneered by Professor Baroness Sheila Hollins and developed with people with learning disabilities.
Ten years after Winterbourne View Hospital, have matters reached the point where urgent and decisive intervention is necessary? The deaths of three adults with learning disabilities at another private hospital, Cawston Park in Norfolk, is the stark answer.
Despite £10.3m spent on the Transforming Care Programme and promises since the exposure of Winterbourne View Hospital in 2001, there have been subsequent scandals at St Andrews Hospital in Northampton, Whorlton Hall in Barnard Castle, Cygnet Yew Trees Hospital in Frinton-on-Sea and Cygnet Woodside in Bradford. Without exception, these exacerbate the anguish of families that their relatives with learning disabilities and autism may end up in such provision.
The Treatment of Autistic People and People With Learning Disabilities
On 13 July 2021, the House of Commons Health and Social Care Committee published its fifth report of session 2021-2022: The treatment of autistic people and people with learning disabilities. It stated:
Autistic people and people with learning disabilities have the right to live independent, free and fulfilled lives in the community and it is an unacceptable violation of their human rights to deny them the chance to do so.
It is also more expensive to detain autistic people and people with learning disabilities in inpatient settings and this takes up resources that are not then available for more humane community care.
We are therefore deeply concerned that community support and provision for autistic people and people with learning disabilities, and financial investment in those services, is significantly below the level required to meet the needs of those individuals and to provide adequate support for them in the community…
On 9 September 2021, the Safeguarding Adults Review concerning Joanna, Jon and Ben was published about their treatment and deaths at Cawston Park Hospital. There were no undercover reporters tracking events at Cawston Park. But at Ben’s inquest, the hospital’s own CCTV coverage revealed that his final interaction was with a staff member who assaulted him. This is a familiar theme.
Strong Risk of Harm
Patients within such units are at risk of being subject to restrictive practices and being harmed. Adult Safeguarding professionals are alerted to the harms experienced by patients through increasing numbers of referrals which are vulnerable to becoming normalised. Although recommendations may result from subsequent safeguarding inquiries, sustained change does not result. The powers of adult safeguarding are modest when considered alongside those of the Care Quality Commission, professional regulators and the police.
Each placement is haunted by failures. These result from the absence of community based support to families who struggle to manage. 24/7 funded support in placements is typically the only option. And these placements are rarely local. Such a stark choice is light-years from the known aspirations of people with learning disabilities and autism and with those of Think Local, Act Personal, for example. People with learning disabilities and autism, and their families do not yet have a persuasive voice in deciding how to spend funding for support.
The low threshold for invoking the Mental Health Act is not subject to the rigorous scrutiny it merits. Ben was admitted to Cawston Park Hospital without a mental illness. He was “ready for discharge” five months before he died. His delayed discharge, and that of too many others, is a whole system problem. What is the business case for discharging patients for whom indefensible weekly fees of many thousands of pounds may be charged? Such fees place enormous strain on NHS budgets. But they are unaffected by failures in service delivery, including those that result in death.
It took too long for the Care Quality Commission to take decisive action. It is the custodian of a service’s purpose. But neither Winterbourne View Hospital nor Cawston Park Hospital delivered either assessment or treatment. Further, there is no proper prudence concerning the registration of the interconnected companies of the directors of these hospitals.
There has to be more to clinical commissioning than hunting for specialist placements. Families cannot value a clinical commissioning service that delegates responsibility for occasionally reviewing the adequacy of their relatives’ serivice. As a default placement, private, specialist hospitals are failing people. Most particularly in terms of their physical health care and mental distress. Treatments which hinge on medication, seclusion, restraint, observations and chronic inactivity leave the crises which give rise to people’s admissions unattended.
The Safeguarding Adults Review concerning Cawston Park Hospital recommended:
- a review of the current legal position concerning private companies, their corporate governance and conduct by the Law Commission. The DHSC would have to commission such a review;
- the adoption of ethical commissioning. A focus on smaller, local commissioning and tax compliance, for example;
- the transfer of all Norfolk patients from the hospital;
- representation to the DHSC concerning the reform of the Mental Health Act;
- greater clinical commissioning involvement. This includes more searching scrutiny of services, up-to-date knowledge of what service is being commissioned and how it is experienced;
- greater use of registration cancellation by CQC;
- setting out the consequences of absent family-centred approaches at this hospital for the CQC
- a shift away from “medical led admissions and social care discharges;” and
- attending to the racism of people with cognitive impairments.
We do not want more rehearsals of the same history. We cannot rely on safeguarding practitioners to do better than this. It is a whole system matter. It’s time to defer to what has always been there. We need to listen to the experiential knowledge of people with learning disabilities, people with autism and their families and their desire for humane and kinder futures.