At a recent Health and Social Care Committee hearing, the Care Minister, Helen Whately was asked to explain the high number of deaths in young autistic and learning disabled people and why their mistreatment continues, with no notable change in the last decade.  

Following the two previous evidence sessions, the inquiry raised with the Minister poor experiences of inpatient care, including ongoing concerns about the unnecessary use of restraint, segregation and seclusion for autistic people and individuals with learning disabilities.

Personal experiences were put to the Minister, with the panel’s key questions being: why are so many people with learning disabilities and autism dying so young? Why are there still more than 2,000 people in inpatient units, many of whom are receiving inadequate care? Why are restraints and isolation still regularly practiced? Why – 10 years on from Winterbourne View and the Transforming Care programme – does it seem as though nothing has changed?

People with learning disabilities should not be expected to die young

The inquiry began with a personal testament from Bengi O’Reilly, whose autistic child is currently in an assessment and treatment unit (ATU) after she began suffering with her mental health and hit crisis point in 2018. Bengi tells of the complete lack of support her daughter received and how she was repeatedly told to bring her to A&E, which she knew would only make her condition worse. Eventually, Bengi’s daughter was moved to an ATU, hundreds of miles away in Wales, and that’s where she still is today. She is completely cut off from the community, with no mobile phone or any way of contacting her family.

Before the pandemic, Bengi visited her daughter and shortly after her arrival, her daughter was “torn away” from her and restrained. There is no estimated date for her discharge and no clear goals that need to be met in order for her to be discharged. Bengi says the problem is that inpatient units are too generalised and the staff are not trained to manage the complex needs of autistic and learning disabled people. She says there should be specific units for autism and trained specialists who work with the families to provide properly planned care strategies. 

Dr Sara Ryan spoke next about her experience of the inpatient system. Tragically, her son who was admitted to an ATU in 2013, died while under the hospital’s care. Connor was autistic and had epilepsy; he drowned after having a seizure in the bath, while he was meant to be under the supervised watch of staff. Sara had to fight ferociously to find out what happened to Connor, after his death certificate said he died of “natural causes”. Connor’s death is now a well-known story and led to ‘the Mazars review’, an inquest into the deaths of all patients with mental ill health or learning disabilities between 2011 and 2015.

Sadly, these stories are only the tip of the iceberg. Thousands of people with learning disabilities and autism have died preventable deaths, which are often recorded as death by “natural causes”. If there is one thing the panel agreed on, it’s that this needs to stop and people with learning disabilities should not be considered lesser than the general population and should not be expected to die young. Just recently, the death of Laura Booth bought this topic back into the public eye. Laura died while in hospital for a routine eye operation. At the time, her death was also attributed to natural causes and yet five years down the line, the coroner has ruled her death was partly caused by malnutrition as a result of neglect.

"Patients remain powerless, providers are powerful"

Dr Sara Ryan highlights that her son died eight years ago now and yet we’re still in the same position as we were all that time ago. We keep hearing the same, tragic stories, which are discussed at length and greatly sympathised with, yet no real action is being taken and no real change is happening. Sara says that an independent review is necessary for every autistic or learning disabled person who died in care. As all too often, deaths that would be considered a crime are brushed under the carpet when they happen in an ATU. She said: “We need to hold people to account, we need to take action, we need to decide how much we are prepared to spend, how much we are prepared to enforce and how much we are prepared to scrutinise.”

Rosie Cooper asks Helen Whatley why we are still in this situation when so many have set out with the ambition to change it, and presses the Minister on what she is going to do to achieve this “dramatic change”. She said: “Many have tried to change the system, and you’ve all been very sympathetic, but you’ve all failed. Meanwhile, patients remain powerless, providers are powerful, and in this sense the NHS is acting as an accomplice, and government is the mechanism. We need to start acting. The response to the pandemic has shown that if we really wanted to do something we could, we’ve just got to spend the money differently. We need to ban or at least monitor inpatient stays, value the lives of patients. So, what is actually stopping the necessary change? Nothing’s going to change unless you do something and act. Stop talking and listening, act.”

The Care Minister responded by saying the key thing to improve is training, and the Oliver McGowan training programme is currently being trialled and will be rolled out once it is effective. However, she says we are still facing multiple barriers that are preventing this immediate change from occurring. These are: lack of support in community (and lack of clarity of what good looks like in the community), failures in transitions to adulthood, problems with funding, specific challenges of those who have Ministry of Justice (MOJ) restrictions, shortage of appropriate housing and gaps in the workforce.

The current funding package set out by the Minister is only enough for 1 in 8 people

Barbara Keeley argues that the key thing holding us back is a lack of funding. She challenges the Minister on her funding plan, stating that the £25 million she has committed for the next three years of community services is simply not enough. She explains that the average cost for a former inpatient to be cared for in the community is £66,000 a year. This means the current package is only enough for 1 in 8 people, and there is no guarantee or funding after those three years. Keeley compares this to the cost of inpatient settings, stating that according to the latest figures (which are from 2013) NHS England spent £557 million a year on inpatient care for people with learning disabilities and autism. This figure highlights that the current funding plan is way off the mark.

The Minister says that the £25 million is for supporting the discharge process and she has established a piece of work to look into the funding of community care, which she is yet to receive the answers from. She agreed that inpatient units are very expensive and are “rarely the right answer”, and when they are absolutely necessary, they must be of “therapeutic value”. She said: “I think I’m being quite clear that I share with you, and others, that this a system that needs to change and there is a set of steps in progress…to make to make that change happen. It’s not simple, these are complex things; this involves action across governments, local authorities and the NHS. So, there is not one simple answer, but there is a whole load of work going on to make it happen.”

A 10-year plan for the social care sector will be published later this year

Claire Murdoch, the National Mental Health Director, was also questioned by the committee. Claire stressed that she is a great advocate for the Trieste model and believes good partnership is essential to good care. Currently, she says there are big gaps in autism care but the NHS is building credible, 24/7 community crisis alternatives as part of the long-term plan.

Rosie Cooper puts to her that some high-risk individuals with learning disabilities or autism are not capable of living in the community. When asked what they need in terms of specialist care, Claire said: “There needs to be a pathway of care, where you’re really clear about how you step people down through the system, back to supported local care. There are models that are highly effective and it’s our hope that we can invest more in those models of care, particularly as we close more beds. Where there is a need for inpatient facilities… they need to be palaces, they need to be really excellent environmentally, in terms of the clinical offering and so forth.”

Although this meeting was the final evidence session of the inquiry, the Health and Social Care Committee say they will continue to investigate the lack of progress made by the Government.

The Minister has confirmed that a 10-year plan for the social care sector will be published later this year. Consultation will begin before the plan is published in order to involve all of those who have expertise, views and interests in the social care reform proposal.