Tuesday, 5 March 2024
Tuesday, 5 March 2024

Talkback UK: Still Flying Over the Cuckoo’s Nest

Tony Flower writes

Following an official review of the 2011 Winterbourne abuse scandal, in which 11 members of staff were convicted of almost 40 charges of neglect and ill-treatment of the hospital’s residents, Care Minister Norman Lamb said – “What happened at Winterbourne View Hospital was horrifying for both the patients and their families. Like many people who watched the BBC Panorama Programme, I was shocked, angry, and disappointed by the way people with learning disabilities or autism and who have mental health conditions or behaviour that challenges were treated. It was unacceptable.”

The Prime Minister at the time, David Cameron, agreed and promised the mistreatment of patients would never happen again. A Department of Health Review concluded that too many people with learning disabilities and autism were in hospital, often far from family and friends, because the right services to support them in the community were not in place. As a result, a commitment was made to close specialist hospitals and move to local, community-based provision.

We’re now on our third Prime Minister since then, so what has happened to that ‘commitment’?

In February 2020, the Equality and Human Rights Commission said – “Today we have launched a legal challenge against the Secretary of State for Health and Social Care over the repeated failure to move people with learning disabilities and autism into appropriate accommodation. We have longstanding concerns about the rights of more than 2,000 people with learning disabilities and autism being detained in secure hospitals, often far away from home and for many years.”

The Department of Health and Social Care’s plan to address this and other issues was delayed by Covid but was finally published in 2022. With depressing inevitability, the plan is vague and lacks urgency. There is no analysis of previously missed targets, its spending commitments are unclear, and the plan has no detail of how each measure will reduce hospital admissions. 

The situation is complicated by the UK’s multi-agency approach, with the regional NHS Trusts, the Department for Health and Social Care, the Care Quality Commission, and many more, responsible for various elements of the service. The boundaries of who does what are often blurred between these organisations, resulting in little overall accountability. Facilities and funding vary between regions and the user experience is a postcode lottery.

It’s frustrating that most of the stakeholders involved in the provision of care agree on the necessity for change, but this creaking, disjointed system seems incapable of its coordination and implementation.

Studies show that there has been little engagement with the people that matter – those with learning disabilities and/or autism imprisoned in these unfit establishments, or their families and front-line staff. There is a ‘we know what’s best for you’ arrogance, that denies the right for people to make or contribute to decisions about their lives. They are the people that know what the barriers are to their discharge and what could be put in place to help them become more independent.

It’s not necessarily about cost. Hospital services are very expensive, with average weekly costs of £3500 and annual costs of £180,000 per person (Mencap, 2019; National Audit Office, 2017). Imagine what could be achieved if these funds were channelled into community care instead.  

“More than 2,000 people with learning disabilities and autism still detained in secure hospitals!” This, more than twenty years after the issue was identified and promises made to rectify it! In the meantime, the mistreatment and poor quality of life continues beneath the radar, until another shocked but brief outcry after the next scandal hits the headlines.

The Equality and Human Rights Commission are in discussion with the DHSC, the Care Quality Commission and NHS England, to call for an enforceable right to independent living for disabled people. Perhaps, if it’s embedded in law, something will finally be done to end this misery.

We live in hope! We live with a hope for real justice! 

Information for this article from: ‘Why are we stuck in hospital?’ Understanding delayed hospital discharges for people with learning disabilities and/or autistic people in long‐stay hospitals in the UK – Ince – Health & Social Care in the Community – Wiley Online Library

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