Transforming Care Programme

Helen Hayes Excerpts

Thursday 5th July 2018 Commons Chamber

[Helen Hayes (Dulwich and West Norwood) (Lab)]

I am grateful to the Backbench Business Committee for allocating time for the debate and to the right hon. Member for North Norfolk (Norman Lamb) for securing it. I am also grateful for his commitment to this issue over many years. It is a pleasure to follow the right hon. Member for Chesham and Amersham (Dame Cheryl Gillan). I am grateful, too, for her deep commitment to, and knowledge of, the subject of autism.

The treatment of residents at Winterbourne View was a national disgrace. That any human being should be subjected to such terrifying physical and emotional abuse in their own home setting is utterly abhorrent, and that those people should be among the most vulnerable and least able to speak out or defend themselves simply defies belief. The way in which we treat our most vulnerable residents is a mark of our civilisation, and Winterbourne View was a failure of the most basic measure of human decency. It was therefore absolutely right that the public outcry that followed Winterbourne View led to a firm commitment from the Government and to the transforming care programme.

However, the transforming care programme has failed to live up to its name. It has not substantially transformed the care and support that many people with autism and/or a learning disability are receiving. There are still far too many people living in hospitals such as Winterbourne View instead of homes. There are still far too many examples of families who have to fight each week to ensure their relatives’ safety and security, and even the basics of care, and too many people are still not receiving the support they need to live healthy, secure and fulfilled lives. We are now eight months away from the end of the transforming care programme and urgent action is needed to deliver a genuine transformation in the quality of care for thousands of people living with learning disability and autism in the UK.

In December 2012, 3,400 people were in NHS-funded learning disability in-patient beds, with around 1,200 in assessment and treatment units. The original Department of Health report following Winterbourne View found that the main reason for referral was the management of a crisis, suggesting that the failure in service provision had often started long before the person was admitted to hospital. The failure often involved a lack of support in other areas of health, social care and education provision, often leading to behaviour and mental health deteriorating over time and then reaching a crisis point. The report’s conclusion suggested six key changes, and I want to restate them because, in the experience of too many of my constituents, those changes have not yet been implemented or become a reality.

The first recommendation was that the information made available by councils, health bodies and care providers should be transparent and of good quality. The second was that community-based mental health services should offer assertive outreach, 24-hour crisis resolution and general support. The third recommendation was that small-scale residential care should be available to those in greatest need. The fourth was that employment or daytime activities should be offered. The fifth was that health and social care commissioners should start to plan from day one of admission to in-patient services for the move back to the community. The final recommendation was that the Care Quality Commission should monitor whether services are meeting essential standards, take enforcement action if a provider is not compliant, and monitor the operation of the Mental Health Act 1983.

Those recommendations bring me to the case of my constituent Matthew Garnett. Matthew’s mother Isabelle is in the Public Gallery today, and I am grateful to the Minister for taking the time to meet me and Isabelle recently. I have spoken of Matthew’s situation in the Chamber several times, but I make no apologies for raising it again today because his case illustrates exactly how little progress has been made in implementing the Department of Health’s original recommendations in response to Winterbourne View.

Matthew is approaching his 18th birthday. He is a tall young man whose absolute passion is football, particularly Liverpool FC. Matthew has autism. I first met Matthew’s mum at the start of 2016 when she came to my surgery following a deterioration in Matthew’s mental health and behaviour at home. Matthew had been admitted to a mental health unit under section. At that time, Matthew’s parents were concerned that the assessment unit that he was in had no specialism in autism and that he had been there for far too long without appropriate clinical support. They had been recommended a hospital in Northampton, St Andrew’s, as a place with the right expertise for Matthew to be able to get well and come home. I supported their battle to get access to a bed for Matthew at St Andrew’s, and we celebrated when he was allocated a bed.

After Matthew had been at St Andrew’s for just a few weeks, his parents came to see me again. They were concerned that Matthew seemed to be taking part in very few activities, that he was losing weight, that he had become more withdrawn and that they had noticed signs of anxiety in his behaviour. They were concerned that there was no discharge plan and that staff seemed reluctant even to talk about one. Matthew’s situation deteriorated rapidly at St Andrew’s. He suffered a broken wrist and bruising. His parents found excrement in his shoes. He lost a catastrophic amount of weight. His parents became gravely concerned that he would die, so we fought again. They found alternative community-based provision not far from the hospital. They contacted Alderwood, which the right hon. Member for North Norfolk has already mentioned, and discovered that it had a place for Matthew, so he moved in.

Matthew is now flourishing. He volunteers at the local football club and in the village where his home is located. He takes part in a wide range of activities—from film nights to canoeing and trips to the seaside—and he is able to play and watch lots of football. Matthew is well and living life to the full. The care and support he is receiving costs considerably less than the £12,000 a week spent by the NHS on a private hospital bed in which his health was deteriorating and from which there was no plan to discharge him.

[Norman Lamb]

The hon. Lady is making a powerful case. Does she agree that the Care Quality Commission should do far more to challenge how these units often define themselves as specialist units? The care given to Matthew and Fouzia at St Andrew’s in Northampton was very far from specialist; it was inappropriate and it damaged them massively.

[Helen Hayes]

I thank the right hon. Gentleman for his intervention. I also visited St Andrew’s and, when I returned, I looked at how it was advertising its services and compared that with what I saw. I would go so far as to say that, in any consumer environment, a good case could be made that St Andrew’s was contravening the Trade Descriptions Act 1968 in how it was advertising itself, given the expertise the staff actually had in relation to autism. In my view, that is certainly a matter for the CQC.

Matthew’s case is important, because it demonstrates clearly that all the failures that led to Winterbourne View are still possible. Matthew’s family did not receive the support they needed for Matthew at any stage prior to his admission to hospital. It was that lack of support that led to his behaviour deteriorating in the first place. There was no assertive outreach or 24-hour crisis resolution support; there was just the local police force when things got too much. That was four years after the Department of Health report on Winterbourne View.

The small-scale residential setting in which Matthew is now living is brilliant, but there is far too little of that type of provision and none of it close to home. Matthew’s parents live in my south London constituency, and Matthew is currently living in Northamptonshire. I met the providers of his care at Alderwood, and they told me that what they provide is easily scalable. It is about training staff in effective communication techniques, paying staff properly and providing a good career structure so that providers can retain a stable team, and being able to access funding for the places they provide. It is not rocket science. It just needs a proper commitment to invest in settings that deliver the best possible care.

At St Andrew’s, Matthew was not participating in any meaningful activities on a day-to-day basis; the emphasis was on managing and containing his behaviour through medication rather than engaging him in recovery. In his new home at Alderwood, Matthew is on very low levels of medication. He takes part in meaningful activities that add value to his life and make a real contribution to his community on a daily basis.

There was no discharge planning while Matthew was at St Andrew’s. In fact, his parents were told they were being far too optimistic even to raise discharge with his clinicians. St Andrew’s is a private hospital that is largely funded by the NHS. The Government must look seriously and urgently at the perverse incentives at work in a system that is so reliant on the private sector because of the lack of NHS provision. Private hospitals currently have no incentive to discharge when they are being paid a rate of £12,000 a week by the NHS.

There was very little scrutiny of the effectiveness of the treatment Matthew was receiving in return for such large amounts of NHS funding, and no regard was given to the concerns of his family, who had to fight to get a second opinion, which was itself dismissed by staff at St Andrew’s.

Transforming care can never be fully implemented while such perverse incentives apply and while profit-making organisations are relied on to substitute for a lack of proper funding for NHS and social care provision. Private hospitals too often remain holding pens for patients, rather than the secure and supported homes that they need. No learning disabled or autistic person should be living in a hospital for the long term. We need homes not hospitals.

Too many of my constituents whose family members, including children, have a learning disability and/or autism still tell me that when they express concerns about the care their loved one is receiving, their views are not taken seriously and they have to battle to have their concerns addressed. Again, we cannot begin to see a system that delivers the care that vulnerable people need without proper processes for accountability through which family members can raise concerns.

I am concerned about the Government’s tracking of the progress of the implementation of transforming care. In response to a written question tabled by my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley), the Minister for Care highlighted, in her answer on 4 June, the plan to decommission 900 beds in mental health hospitals. Assuring transformation data provides figures on the number of people with learning disabilities and/or autism admitted and discharged. In the 2017-18 period, there were 330 more discharges than admissions, but it should be noted that that applies not to individual people, but to the individual instance of an admission or discharge, so there is no way to tell to what extent some people are caught in a revolving door. The dataset does not directly identify whether an admission is from the community or a transfer from another hospital setting. Similarly, the data does not directly identify whether the end of an episode of care is a discharge to the community or a transfer to another hospital setting. Thus, although 330 discharges might sound like progress, the Department of Health and Social Care has not so far provided figures for individual cases. In the light of the target of closing 900 beds, this cannot be seen in any way as a victory for either the Government or, more importantly, those vulnerable individuals whom transforming care is intended to safeguard.

I am also concerned that the Government's focus for the final few months of transforming care is far too much on hospital bed closures. Bed closures should be a consequence of the provision of properly funded, high-quality community settings, and the by-product of achieving better outcomes for people currently in long-term hospital provision. Instead, the Government continually refer to bed closures as the headline target and measure for transforming care. Without high-quality, properly resourced alternative provision, bed closures, in themselves, will simply result in further pressures on the NHS, as people who are discharged without sufficient support will end up readmitted, via A&E, to a situation where fewer in-patient beds are available. It is almost impossible to find any meaningful data on the funding and level of community provision for people with autism and learning disabilities, and I urge the Government to switch their focus from bed closures to community provision for the final eight months of transforming care in its current form.

I also want to highlight the regulatory gap that still exists. A constituent contacted me recently on behalf of her brother, who is an adult with autism living in a supported housing provision, paid for through his personal budget. He needs a high level of support and his personal budget is considerable, but his sister has raised concerns about his treatment in the community provision over a period of months. The provision involves a high level of care, but is technically supported housing, which means that it is not regulated by the CQC. The recent report by the Housing, Communities and Local Government Committee and the Work and Pensions Committee on supported housing highlighted this gap in regulation and called on the Government to take action to address it, and I want to do so again today. There is great urgency that we make progress on transforming care, but discharging vulnerable people from hospital into settings that are not regulated creates a risk that they will be failed yet again.

Finally, I wish to highlight the wider gap in awareness and support, particularly in the area of autism. In schools and in the NHS, the experience of far too many of my constituents is that the support needed so that autistic people, particularly children, are able to thrive is simply not there. This continued failure to properly equip teachers and healthcare professionals to understand autism and the support that their students and patients need has long-term consequences through an increased level of care that people need later in life and an increased likelihood of crisis. I urge the Minister to work with her colleagues, particularly those in the Department for Education, to accelerate and bring forward training in autism for teachers, and not just new teachers coming through the education system now but existing teachers who are working day in, day out, without the knowledge that they need to serve autistic students well.

There is no way around the fact that the transforming care programme has failed significantly to date. We need a renewed focus on care and support for people with learning disabilities and autism. In every community throughout the country they should be living well, close to family and friends and properly supported, not locked away receiving over-medicalised care, with no one monitoring how effective that care is or what the public purse receives by way of high-quality provision in return for the expenditure. We need homes not hospitals, and we need everybody living with autism and a learning disability in this country to be able to live life to the full, with dignity, in community settings that are close to home.

[Madam Deputy Speaker (Dame Eleanor Laing)]

I call Ronnie Cowan.

--- Later in debate ---

[Caroline Dinenage]

I am very glad the right hon. Gentleman said that because as part of the Department of Health and Social Care legacy scheme we are providing £70,000 in this year for that sort of intermediate and reablement provision which Share Lives would come under. We should definitely be investing more in that.

I take very seriously the right hon. Gentleman’s point on conflicts of interest. We have to look at that very carefully, because it might imply that any clinician would be conflicted in making a clinical decision because they are employed by a trust. Providers are monitored by the CQC and doctors are of course subject to extremely rigorous professional registration, but I take what he says very seriously and I will look more closely at his concerns. I am very happy to meet him to discuss this issue further if he would like me to do so.

The right hon. Gentleman spoke about pooling resources. There are now formal mechanisms for that to take place, such as section 75 and the ways in which CCGs and local authorities can work together. That is the point of having transforming care partnerships’ commissioners working together.

The right hon. Gentleman spoke about the exclusion of families from decisions. That really upsets me and it really should not happen. There are legal duties, under the Mental Capacity Act 2005 and the Mental Health Act 2007, to have independent mental health advocates. I would be very keen to speak to him further about what more we can do to make sure that the legislation is having the desired effect.

My right hon. Friend the Member for Chesham and Amersham knows I am a massive fan of hers. She has probably done more to further the cause of individuals with autism and their families than anybody else in the history of this building. She spoke with great knowledge about autism and was absolutely right to point out that transforming care is not only about learning disabilities but people with autism. In Think Autism, the adult autism strategy, we set a programme of action across Government to support autistic people to lead fulfilling and independent lives where possible. We have recently refreshed the governance arrangements that will achieve greater traction and delivery of the required outcomes, better supporting autistic people to live healthy independent lives and participate in their local communities.

My right hon. Friend spoke about autism care pathways. NHS England is developing a framework of adult community mental health services which will include care for adults with comorbid neurodevelopmental disorders and/or learning disabilities, rather than the pathways planned and set out in the “Five Year Forward View” implementation plan. NHS England’s care pathway programme has evolved to take account of the current operational context and expert service user advice. The pathway is linear about discrete episodes of care, so is more appropriate for specific interventions undertaken by specialist teams.

My right hon. Friend spoke about the barriers that autistic people face in accessing mental health services. Trusts should already be ensuring that services are accessible to people with autism and that they have made reasonable adjustments to care pathways to ensure that people with learning disabilities and autism can access the highly personalised care and achieve the equality of outcome that we all want.

The hon. Member for Dulwich and West Norwood spoke about her constituent, Matthew Garnett. It was a great pleasure to meet the hon. Lady and Matthew’s mum, Isabelle, recently. I was very shocked to hear of Matthew’s experience and deeply upset to see the pictures of him at his lowest ebb, when he was suffering from the neglect that she spoke of. It was very distressing. I am pleased that the NHS is learning from this. The Marsh review into Matthew’s care has helped to shape a much more focused approach to the needs of children and young people who are at risk of slipping into the sort of crisis that she mentioned. The operational delivery group allows stakeholders, including young people, to shape policy.

[Helen Hayes]

The right hon. Member for North Norfolk (Norman Lamb) raised the issue of St Andrew’s in Northampton having been able to expand so significantly with the benefit of NHS funding—I cannot remember the exact percentage, but the percentage of funding that comes from the NHS for St Andrew’s is up in the eighties and nineties. Does she agree that this is not the right model and will she commit to looking at limiting the further expansion of private in-patient beds, when they are not what is needed for treating young people with autism and learning disability?

[Caroline Dinenage]

We can certainly look at what the hon. Lady suggests. I am pleased that the operational delivery group, which I just mentioned, allows stakeholders to shape policy and it is really good news that Isabelle Garnett, Matthew’s mum, is a major contributor to this and liaises with NHS England directly on its programme around children either in hospital or at risk of being admitted.

The right hon. Member for North Norfolk asked why the evaluation was cancelled. As he knows, an evaluation sponsored by NHS England is already under way, and the Department, having invited bids for its evaluation, was not satisfied that the proposals received were what was needed. That does not mean that we are not absolutely determined to critically review progress, particularly working with stakeholders and users.

The right hon. Gentleman spoke about the “No voice unheard, no right ignored” Green Paper. Although I am always ready to bow to his incredible knowledge in this field, it is not entirely true to say that the Green Paper went unheeded. Some of the recommendations were overtaken by changes in Government policy, and indeed, in Governments, but we have taken forward work such as the named social worker pilot and a review of the Mental Health Act. We have asked Professor Sir Simon Wessely, the chair of the independent review, to listen to people with direct experience of the Mental Health Act and this, of course, includes autistic people and their carers. He published his interim report to update the Government on his progress, which sets out specific issues that we must explore to look at how we can improve the scope of the Act.

The hon. Member for Dulwich and West Norwood also spoke about training for teachers in autism. The Department for Education has funded training and support for teachers through the Autism Education Trust. That is in early years, schools and further education, and so far, 175,000 staff have been trained.