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A decade on from Winterbourne scandal and transforming care patients are still trapped in inappropriate settings

by Ozva Admin
A decade on from Winterbourne scandal and transforming care patients are still trapped in inappropriate settings
A decade after the Winterbourne scandal and the transformation of care, patients are still trapped in inappropriate environments

After a decade to the month since Sir Norman Lamb’s report on the Winterbourne View Hospital scandal, the Home Group brought together parliamentarians, families, care services and charities for a round table in Parliament to find solutions to a program that did not He has achieved what he promised.

This month marks the tenth anniversary of the publication of the report by the former Minister for Care and Support, Sir Norman Lamb, Transforming Care: a national response to Winterbourne View Hospital, which recommended a series of changes in the treatment of people with learning disabilities and autism. Despite these recommendations, multiple subsequent reviews, critical reports, and creation of task forces, there are still nearly 2,000 people in hospital settings a decade later.

A series of FOIs recently revealed a number of factors that indicate why there has been little change.

They include; an apparent lack of scrutiny by NHS England over transformative care plans by commissioners and providers; some providers did not have plans; some of those that did only review them every three years; some said they did not set target rates for adult inpatients or could not provide rates; some respondents said they did not have data related to community downloads, while others said they did not have data on their current Transforming Care-related expenses.

To address the issues and seek solutions, a round table was formed consisting of experts in transformative care, social services, who have campaigned for over a decade on this issue, and parents of children who have suffered due to the lack of progress in the care program. transformative care.

Roundtable participants included report author Sir Norman Lamb, Barbara Keeley MP, who has been lobbying the government in this area for years, former Care Minister Caroline Dinenage MP, Paulette Hamilton MP, Lord Best and Baroness Watkins of Tavistock.

The event was organized by the Home Group, one of the UK’s largest housing associations, which since 2018 has been providing accommodation and specialist clinical support for discharged patients.

Former Minister of State for Health, Stephen Hammond MP, co-chaired the discussion and began by asking Ann and Michael Jones, parents of 31-year-old twins Daniel and Jon, about their experiences with the system.

Ann explained that the twins have severe learning difficulties and autism and have been in and out of different environments, including periods of hospitalization, their entire lives. “Previously, wherever my children have been, from the beginning, he was evasive and never met their needs.”

Parents and families being ‘out of the loop’ was highlighted as a major gap in care that had not been addressed since the Winterbourne View review. Ann added: “I remember on more than one occasion people telling me they knew what was best for my children, not me.”

Sir Norman Lamb reflected that listening to Ann and Michael reminded him that patients and their families are treated as “second class citizens”. “Just before the 2015 general election, we proposed enhanced rights for families, these have never been enacted,” he explained, calling for a shift of power to individuals and families away from providers who “just don’t care.” .

Home Group’s approach in this regard is to work with families from the beginning and treat everyone as individuals. Rachel Byrne, Executive Director of Care and Support Models, explained that this is one of the key areas of importance. “Other essential factors include investing in the right clinical expertise and support, understanding that it takes up to a year for a customer to adjust to their new environment, and lastly, a commitment to support whatever the challenges. We have had clients with us who had gone through seven different locations before coming to us.”

Daniel and Jon now live in Home Group accommodation, and Ann and Michael are amazed at the results. “Now their needs are being met, which is a first for us,” Michael explained. “We feel like he’s really working with Home Group, and our children’s lives have been transformed.”

Daniel and Jon are non-verbal and had poor communication skills when they first came to Home Group and came with significant and complex needs. They hadn’t been engaged for a long time.

Since then, his improvement has been nothing short of remarkable. They are able to interact with each other, to the point where they now visit restaurants together and also took their first vacation together, small things for most people, but not for those who have grown accustomed to isolation from not having the right support.

How we can learn from the failures of the last ten years and improve the lives of patients like Daniel and Jon was the central question that permeated the discussion.

Three key areas needing serious attention were outlined: distribution of funds, adequate housing, and manpower.

“Funded and forgotten” was the term Sir Norman used to describe patients in inadequate care settings. He referenced the case of Tony Hickmott, who was sectioned in 2001 and confined to a secure hospital for 21 years.

The table agreed that it is clear that the current funding system is not working. Sir Norman mused that he had called for a “budget mix” but there is no “easy route to transfer resources to local authorities”.

Barbara Keeley MP noted that the Labor Party “proposed in 2019 that, to some degree, we need to transfer money from the NHS to local authorities.”

Matt Pierce, Deputy Head of Adult Care Services Service at Hertfordshire Social Services, touched on the important issue of the workforce. “When working with people with challenging behaviour, staff need support. There tends to be a big focus on initial training, but we need to focus on ongoing support for staff,” he explained. “There is a recruitment challenge at the national level, and we need to invest in the staff, not only financially, but also to ensure they have basic things, like adequate break time.”

Barbara Keeley reminded the table that “social care workforce turnover is 29%.”

Paulette Hamilton MP, a former nurse, who is part of the influential Health and Social Care Select Committee, raised the issue of housing; “We need to have dedicated properties, that are built or adapted to people’s needs, every year.” She also stressed the importance of ensuring that housing is in suitable communities, where people with learning disabilities and autism can thrive, rather than feeling isolated.

The roundtable looked to the future and the steps we need to take to ensure that this issue returns to the top of the government’s agenda.

Barbara Keeley, with the agreement of many others around the table, called on the government to appoint a National Champion for care transformation. “There is no urgency in the government’s response. All we get is endless reports and no action,” she said.

Vivien Cooper, executive director of the Challenging Behavior Foundation, explained: “We need to keep pushing and speaking up for the nearly 2,000 patients who are in inappropriate settings.” Ms. Cooper also urged the table to think about the next generation. “We need to help the current 2,000 patients, but we also need to invest in the next generation, so we don’t have another 2,000 later on.”

Caroline Dinenage MP was Minister for Care from 2018 to 2020. She explained that the only time this issue was raised and taken seriously was when there was a major incident, such as Whorlton Hall Hospital, which occurred under her ministerial tenure.

“What I have concluded is that we need everyone to keep up the pressure,” he said. “This needs a relentless approach.” He explained how he felt “we were about to get somewhere” when the Covid-19 pandemic hit and the country went into lockdown, causing most if not all of the focus to fade.

All those gathered at the table agreed on a collective approach. It was suggested that a task force, based on the work of the APPG on Inappropriate Institutional Care of Autistic People and People with Learning Disabilities, chaired by Barbara Kelley MP, could be established to pressure the Government to tackle the problem with renewed vigour.

Because all roundtable participants agreed that another year, let alone a decade, cannot go by without real progress being made in getting these 2,000 people trapped in inadequate hospital settings back to their communities with their loved ones. .

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