A decade on from Winterbourne scandal and transforming care patients are still trapped in inappropriate settings
After a decade to the month since Sir Norman Lamb’s report into the Winterbourne View Hospital scandal, Home Group brought together Parliamentarians, families, care services and charities at a roundtable in Parliament to find solutions to a programme that has failed to do what it promised.
This month marks the tenth anniversary of the publication of former Minister for Care and Support, Sir Norman Lamb’s report, Transforming Care: A national response to Winterbourne View Hospital, which recommended a raft of changes in the treatment of people with learning disabilities and autism. Despite these recommendations, subsequent multiple reviews, critical reports, and taskforces being set up, there are close to 2,000 people still in hospital settings a decade on.
A series of FOI’s recently revealed a number of factors that points to why there has been little change.
They include; an apparent lack of scrutiny by NHS England over commissioners’ and providers’ transforming care plans; some providers didn’t have plans; some of those that did only reviewed them every three years; some said they did not set target rates for adult inpatients or could not provide rates; some respondents answered that they did not hold data relating to discharges into the community while others said they did not hold data on their current spend related to Transforming Care.
To address the issues and look at solutions a roundtable made up transforming care experts, social services, those who have campaigned for over a decade on this issue, and parents of children who have suffered due to the lack of progress with the transforming care programme.
Roundtable participants included report author Sir Norman Lamb, Barbara Keeley MP, who has been pressing Government in this area for years, former Minister for Care, Caroline Dinenage MP, Paulette Hamilton MP, Lord Best, and Baroness Watkins of Tavistock.
The event was hosted by Home Group, one of the UK’s largest housing associations, which has been providing housing and specialist clinical support for discharged transforming care patients since 2018.
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, their experiences of 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 hospitalisation, for their whole lives. “Previously wherever my sons have been, from the beginning, it was non-committal and never met their needs.”
It was highlighted that parents and families being “out of the loop” was a major failure in care that has 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 hearing from 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, “simply don’t care.”
Home Group’s approach to the matter is working with families from the outset and treating everyone as an individual. Rachel Byrne, Executive Director of Models of Care and Support, explained that is this one of the key areas of importance. “Other essential factors include investing in the right clinical expertise and support, understanding it takes up to a year for a customer to adapt to their new environment and, finally, a commitment to support whatever the challenges. We have had customers with us who had been through seven different placements before they came to us.”
Daniel and Jon are now living in Home Group accommodation, and Ann and Michael are astounded by the outcomes. “Now their needs are being met, which is a first for us” Michael explained. “We feel that it is really working with Home Group, and our boys’ lives have been transformed.”
Daniel and Jon are non-verbal and had little communication skills when first arriving at Home Group and came with significant complex needs. They had not engaged with each other for some time.
Since then, their improvement has been little short of remarkable. They are able to interact with each other, to the point now where they visit restaurants together and also took their first holiday together – small things for most people but not for those who have been used to isolation due to not having the right support.
How we can learn from the failures of the past ten years and improve the lives of patients like Daniel and Jon was the core question that permeated the discussion.
There were three key areas outlined that needs serious attention: funding distribution, appropriate housing and workforce.
“Funded and forgotten” was the term Sir Norman used to describe patients in inappropriate care settings. He referenced the case of Tony Hickmott, who was sectioned in 2001, and was held in a secure hospital for 21 years.
The table were in agreement that it is clear the current funding system is broken. Sir Norman reflected that he had asked for a “pooling of budget” but there is no “easy route to shift resource to local authorities”
Barbara Keeley MP noted that The Labour Party “proposed in 2019 that to some extent we need to shift money from the NHS to local authorities.”
Matt Pierce, Deputy Head of Service for Adult Care Services, at Hertfordshire Social Services, picked up the important issue of workforce. “When working with individuals with challenging behaviour, the staff need to be supported. 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 national recruitment challenge, and we need to invest in staff, not only economically, but ensuring they have basic things, like appropriate respite time.”
Barbara Keeley reminded the table that, “social care workforce turnover is 29%.”
Paulette Hamilton MP, a former nurse, who sits on the influential Health and Social Care Select Committee, raised the issue of housing stock; “We need to have dedicated properties, which are built or retrofitted to the needs of people, every year.” She also stressed the importance of ensuring that the housing is in suitable communities, where people with learning disabilities and autism could thrive, rather than feel isolated.
The roundtable looked to the future, and the steps we need to take to ensure that this issue is back at the top of Government’s agenda.
Barbara Keeley, with agreement from many others around the table, called on the Government to appoint a National Champion for transforming care. “There is no urgency in the Government’s response. All we get is endless reports and no action” she said.
Vivien Cooper, CEO of the Challenging Behaviour Foundation, explained “We need to keep pushing, and raise the voice of the almost 2,000 patients who find themselves 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 down the line.”
Caroline Dinenage MP was Minister for Care from 2018 – 2020. She explained how the only time this issue was raised and taken seriously was when there was a serious incident, such as Whorlton Hall Hospital, which happened under her ministerial tenure.
“What I have concluded is that we need everyone to keep up the pressure” she said. “This needs a relentless focus.” She explained how she felt “we were just about to get somewhere”, when the Covid-19 pandemic hit, and the country went into lockdown, resulting in most, if not all, of the focus slipping away.
A collective focus was agreed by all round the table. It was suggested that a taskforce could be set up, building on the work of the Inappropriate Institutional Care of Autistic People and People with Learning Disabilities APPG, chaired by Barbara Kelley MP, to push Government to tackle the issue with renewed vigour.
Because, all of the roundtable participants were in agreement that, not another year, never mind a decade, can go by without real progress being made to get these 2,000 people trapped in inappropriate hospital settings back into their communities with their loved ones.
Get the inside track on what MPs and Peers are talking about. Sign up to The House's morning email for the latest insight and reaction from Parliamentarians, policy-makers and organisations.