Learning Disabilities (Care in the Community)

Tuesday 8th July 2014 Westminster Hall

16:30

[Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)]

It is a pleasure, Mr Streeter, to serve under your chairmanship, and I am grateful to have been granted this debate. There are 1.4 million people with a learning disability in the UK and many require care and support to live full lives in their communities. Many do so, supported by families, friends, charities and funded social care. However, a small but significant number—just over 3,000—are far from their homes and communities, stuck in assessment and treatment units. They are some of the most vulnerable people in our society. Many display challenging behaviour and require skilled support from a range of professionals, but that is no reason why they should not be cared for and supported in their community.

In 2011, the BBC’s “Panorama” programme exposed truly horrific abuse and neglect of patients with learning disabilities at the Winterbourne View assessment and treatment unit. Many hon. Members will remember the deeply distressing images of people being hit, verbally abused, viciously restrained and thrown into seclusion. Some of the perpetrators were rightly sent to prison, but Winterbourne shone a light on the wider scandal of how the NHS and local authorities throughout the country have failed to give people the right support to enable them to live in the community. They had hidden that failure by sending people with learning disabilities to in-patient settings, in many cases for years and often hundreds of miles from their families and communities, isolated and alone. That was against Government policy and was a scandalous misuse of what assessment and treatment beds should be used for. It was estimated that the cost was around £500 million.

[Kate Green (Stretford and Urmston) (Lab)]

I am glad that my right hon. Friend is raising this important matter this afternoon. Does he agree that the situation, far from improving, may be worsened as a result of the closure of the independent living fund if it means that more learning-disabled people who are currently able to live independently are forced into residential care?

[Mr Clarke]

My hon. Friend makes a valid point and was right to do so.

Some £500 million of public money was spent to pay for people to be over-medicated with anti-psychotic drugs and kept in seclusion at risk of assault and self-harm. In December 2012, the Government put in place an action plan with the objective of giving people with learning disabilities support to enable them to move out of places like Winterbourne View and to return to their communities. A joint improvement programme was also put in place, and the NHS and local authorities were given a deadline of 1 June this year to make that happen.

The result is nothing short of a scandal. Not only has the deadline been missed, figures from the NHS show that more people are going into those units than coming out. Not only that, there seems little appetite to move people. Recent NHS data showed 90% had no discharge date. Meanwhile the human suffering continues. The learning disability census showed that 57% had experienced self-harm, an accident, physical assault, hands-on restraint or had been kept in seclusion.

[Mr Andrew Smith (Oxford East) (Lab)]

I, too, congratulate my right hon. Friend on this enormously important debate. Last Friday saw the first anniversary of the preventable death of Connor Sparrowhawk in the Slade unit in my constituency. One year later, we have not had the inquest or the serious case review, and his family are scrambling around to raise money so that they will be legally represented at the inquest where the public authorities will be represented at taxpayer’s expense. Does my right hon. Friend agree that more needs to be done to prevent such tragedies and, when they occur, to help the families and victims to see justice?

[Mr Clarke]

I agree entirely with my right hon. Friend. It was important that he put that case on the record.

The picture we are seeing is clearly unacceptable. Mencap, the Challenging Behaviour Foundation and Enable in Scotland have campaigned vigorously with the families of those affected, and I thank them for their advice for this debate. Many of the families have experienced the sheer pain of knowing their son, daughter, brother or sister has suffered horrific abuse and in some cases died. They have battled in many cases for years to get their loved ones out of these dreadful places, but have been blocked by an uncaring system that is often more focused on money than high-quality care and the rights and dignity of people with learning disabilities.

To mark the passing of the 1 June deadline, the families came together to write an open letter to the Prime Minister asking him to take urgent action and to meet them. I understand from them that to date there has been no reply. That is unacceptable and I hope the Prime Minister will look again at their letter and take the opportunity to meet them.

I had the privilege of meeting many of the families some time ago prior to my Adjournment debate back in autumn 2012, and more recently at last week’s all-party group on learning disability which I chair with Lord Rix, who has of course campaigned vigorously in this area. In common with all my colleagues, I cannot praise Brian more highly. I pay tribute to the families’ determination in fighting to change things for the better, not only for their loved ones, but on behalf of the thousands of others trapped far away in these places.

I turn to the case of Josh. The Wills family have campaigned for their son, and #BringJoshHome has caught the public interest, which we welcome. Phil Wills, his dad, spoke at the all-party group meeting last week and I know how moved everyone in the room was. Phil and Sarah’s son, Josh, lived in his family home in Cornwall with his siblings until July 2012 when his self-injurious behaviour increased. As a result, he was sent to a unit 260 miles away. Phil and Sarah reluctantly agreed to that because they were told there were no local services and it would be for a six-month assessment period to give everyone an understanding of the support and services Josh needed.

Almost two years later, Josh is still in Birmingham, a five-hour trip for his family. The Kernow clinical commissioning group continues to procrastinate and refuses to commission the services needed locally. Meanwhile, away from his family, Josh grows more anxious and his parents fear for his life because of the severity of his behaviour. He spent both his 12th and 13th birthdays there and has never met his newly born little sister.

I am very grateful to the Minister for his address to the all-party group meeting last week. I understand that he has met Phil and Sarah on more than one occasion and, to his great credit, many of the other families. I know he shares my deep concern over what has happened, and indeed, what has not happened. At the meeting, he shared his feelings about the lack of progress and the work he has been doing with NHS England, which has powers to intervene and address local failings. I say to him today that his views were very much appreciated.

I also welcome to the debate the shadow Minister, my hon. Friend the Member for Leicester West (Liz Kendall), and I welcome the contributions of my hon. Friend the Member for Stretford and Urmston (Kate Green) and my right hon. Friend the Member for Oxford East (Mr Smith). I look forward to what the Minister has to say, and in particular, I would like him to answer the fundamental questions that every family affected wants an answer to. Given that the June deadline has passed, what are he and other Ministers now doing, and what will the new deadline be? Where will the leadership come from across health and local government to ensure that we make progress?

It would be beneficial if the Minister could clarify the status of the joint improvement programme originally tasked with getting people back within their communities. Patently, that has failed and it has been dealt a further blow with the resignation of its director only yesterday. Are we to see a second joint improvement programme? Who will it consist of? How will it be successful? Critical to the solution, in my view, is also how we refocus money away from these high-risk units and into good-quality, locally based provision. If he could comment on that as well, I would be extremely grateful.

With regard to Scotland, it should be said that despite the Barnett formula, which means that 10% of the money spent in England is allocated to the Scottish Government, the widespread concern that is here in England also applies in Scotland. It is not helpful that Scottish data on these matters are poor, and that the £34 million allocated on the basis of the Barnett formula—arising from the committee that I chaired on disabled children and their families—was not spent on that purpose, but was used to keep council tax static. Scottish decisions on such placements can mean that placements out of area can also lead to placements out of Scotland. In one case, a man was sent to Carstairs, an NHS hospital for the criminally insane. He was later dispatched to Newcastle, where his elderly father finds the greatest difficulty in visiting him.

According to John White, the positive behaviour support adviser of Enable Scotland:

“The issue with assessment and treatment units can be that such environments can become the ‘setting conditions’ for people developing the challenging behaviours they are meant to be assessing and treating in the first place. We know from experience that people who had to live in NHS institutions for many years developed challenging behavioural repertoires in response to the experience of living in such environments and so it is logical that similar environments with similar institutional features are likely to encourage the development and maintenance of similar challenging repertoires.”

I would add that, important as it is, positive behaviour support is not a panacea and should be available as a part of a multi-agency health and social care collaborative approach. We need services to be designed around people, who along with their families, should have as much choice and control as possible. We need strong local crisis supports, staffed collaboratively by the NHS and local providers working in partnership, preventing hospital admission in the first place for all but those few people with a significant mental health problem that requires treatment.

For many years, we have been talking about care in the community, and there have been great strides. But the 3,250 people we are talking about today have been failed, let down by poor-quality or non-existent local services and then placed in high risk in-patient settings, where we have seen abuse, and tragically, loss of life. This is a national disgrace, and one that I hope right hon. and hon. Members from both sides will agree must be addressed decisively now.

I look forward to the Minister’s reply. I thank him for his presence, and I know he will share my view that these issues are crucial to the services that we provide, particularly in social services, remembering the rights of every individual citizen of this country.

16:45

[The Minister of State, Department of Health (Norman Lamb)]

I congratulate the right hon. Member for Coatbridge, Chryston and Bellshill (Mr Clarke) on securing the debate and thank him for doing so. I do not think I disagree with a single word he said in his speech today. The right hon. Member for Oxford East (Mr Smith) also talked about the scandalous case of Connor Sparrowhawk. I have met his mother and what happened there should shock us all. There was acknowledged negligence in the care and these things simply cannot go by without a proper and effective response to stop repeats of this sort of thing ever happening again.

One thing that the right hon. Member for Coatbridge, Chryston and Bellshill focused on was the families, to whom I pay enormous tribute for their campaigning. What is most shocking when one talks to them is the sense that they are not listened to—that they raise their concerns with public bodies and get no effective response. They are ignored and that should shock us all.

The right hon. Gentleman also said that it is an ongoing scandal and a scandalous misuse of public money, and I completely agree with him. This has now gone on for very many years. It is an unacceptable remnant of the previous system of institutional care that has to come to an end. The thing that has depressed me in this job, more than any other aspect of it, is the extent to which it is so difficult to change the culture that allows this sort of thing to carry on. There is the sense that those commissioning care seem, it appears, to be willing to carry on with business as usual, when we know that the outcomes for those individuals are not acceptable, and that very many of these individuals are able to live a better life in supported living in their communities. The imperative to achieve change is as strong as ever, and for as long as I am in this job, I will do everything I can to try to change things.

Because of my total frustration about the way in which commissioning has happened, I chose to go out to visit one 17-year-old girl a couple of weeks ago in an assessment and treatment centre to see it for myself, and to see the barriers that that family are up against and the problems that they have had engaging with the commissioners of care, which, in that case, is NHS England. Indeed, with regard to the case of Josh that the right hon. Gentleman mentioned, I have invited the clinical commissioning group to come into my office on, I think, 22 July, together with NHS England and with the family, so that we can get to the bottom of what has gone wrong and try to achieve a solution. I am prepared to intervene in this way if necessary, to force change to a situation that I regard as completely unacceptable.

I am very pleased to have the opportunity to focus on the needs of people who, as the right hon. Gentleman said, are among the most vulnerable in our society. Many of us share the concern that people with learning disabilities and their families are still getting an unacceptable raw deal from the health and care system, from other public services, and from society in general. People with learning disabilities have exactly the same rights as anyone else, yet they continue to experience discrimination, abuse and a basic lack of respect for their fundamental rights. That should shock us all.

[Margot James (Stourbridge) (Con)]

I am most encouraged by my hon. Friend’s remarks, and I congratulate the right hon. Member for Coatbridge, Chryston and Bellshill (Mr Clarke) on securing this important debate. Has my hon. Friend come across the organisation based just outside my constituency, Changing Our Lives? It was founded by Jayne Leeson, who was awarded the MBE for her services in this area. It is doing such innovative work that demonstrates clearly the potential of people currently in residential care with learning disabilities, who can live a most fulfilling life outside, in the community, through supported living.

[Norman Lamb]

I am very grateful to my hon. Friend for that intervention. I would be interested to hear further information about the organisation to which she refers. It is clear that sometimes a leap of faith is required to give a person the chance of a better life outside, and the system is horribly risk averse. We know that the main cause of decisions to keep people in assessment and treatment centres is the clinical judgment that the person needs to stay there, so that needs to be challenged. I want to give people the right to a second opinion and I am in discussions with Simon Stevens, the chief executive of NHS England, to give people that right, because we have to find ways of giving a voice to people who hitherto have felt that they are ignored and not listened to and that nothing ever changes.

I pay tribute to the two organisations mentioned by the right hon. Member for Coatbridge, Chryston and Bellshill: Mencap and the Challenging Behaviour Foundation, which have continued to make the case on behalf of people with learning disabilities.

Winterbourne View and the appalling abuse of people there reminded us that there is still a massively long way to go to ensure that people are safe and get the right support—the support that they need. The Government’s review following the Winterbourne View case looked at the systemic issues facing people with learning disabilities and their families. At the end of the review, we published the concordat—the right hon. Gentleman referred to that—bringing together all the national organisations to commit to change. In a way, the most distressing thing is that I felt that organisations committing to the concordat and the change set out in it were doing that with a seriousness of intent that they would deliver on. The lack of change that there has been since then is really shocking, given that they committed to achieving that change. Eighteen months on, we all need to remind ourselves that progress so far has not been nearly good enough and that we all need to continue to work in partnership to deliver on the commitments solemnly made at the start of all this.

I have said recently, and the information that we have shows, that far too many people with learning disabilities are still stuck in hospitals, often hundreds of miles from home and in many cases for years, with serious questions about whether they are getting the right care and support.

I have also met Mike Richards, the chief inspector of hospitals, and Paul Lelliott, the deputy chief inspector for mental health, to ensure that the Care Quality Commission challenges organisations. If someone is living in an assessment and treatment centre, which is there for assessment and treatment, not for long-term living, surely it is not delivering the right model of care. That needs to be challenged by the Care Quality Commission and not simply accepted and tolerated.

Collectively, we need to be honest and say that the system has so far completely failed to deliver on the commitment made in the concordat significantly to reduce the number of people with learning disabilities who are in effect living in hospitals—for whom hospital is their home.

[Jim Shannon (Strangford) (DUP)]

Will the Minister give way?

[Norman Lamb]

I will very quickly; I am conscious of the time.

[Jim Shannon]

I want to say just one thing. Is the Minister saying that this Government are committed to partnership relationships with housing groups and those who are committed to facilitating supported living for people outside these homes? I think that, if he is, he will find that many outside bodies are prepared to take him up on that.

[Norman Lamb]

I very much agree and I am grateful to the hon. Gentleman for that intervention. Providers of supported living care need to be much more central to the task of changing this culture. Indeed, I have asked for a meeting to be arranged that will bring in some of those providers, with Simon Stevens and the chief nursing officer, Jane Cummings, who I am pleased is now in charge of this programme, to demonstrate how they can play a part in effecting change.

I also want to acknowledge the work that has been done from the concordat and what has been achieved by NHS England and other delivery partners.

It is appropriate for us to start by looking at the people who were in Winterbourne View before it closed. I am pleased to report that NHS England’s Improving Lives team, who include senior clinicians, social care staff, third sector partners and family members of people with learning disabilities, have now reviewed the care of all but one of the 47 people who were in Winterbourne View, and the care of the one remaining individual will be reviewed by the end of this week. Those reviews have resulted in some people moving out of hospital into circumstances that are more appropriate for them as individuals.

The Government have provided funding so that the people who were in Winterbourne View can have additional trauma assessments where the need has been identified and they have consented to those assessments. We are providing additional funding to support families through a telephone helpline, regular telephone counselling and family support days. The funding will also support other people with learning disabilities—including the 17-year-old girl whom I visited a fortnight ago—who have experienced institutional abuse, and help their families.

Involving people with learning disabilities and their families is key to ensuring that the work that we are doing means that they have a better experience and better outcomes. We have provided funding to organisations to allow people with learning disabilities and their families to share their views with us, so that we can listen to them and respond to the concerns that they raise.

We have also made progress on other Winterbourne View concordat commitments. For example, guidance has been developed on commissioning advocacy for people with learning disabilities so that, again, they get a voice and they get access to information, advice and support when necessary. It is vital that local commissioners ensure that people have proper access to high-quality advocacy where they need it.

[Mr Tom Clarke]

I am very grateful for the Minister’s tone and I know that he feels deeply bound to respond to the problems that we are discussing. I welcome the fact that he mentions advocacy. Will he assure us that his Department will do everything possible to insist that advocacy remains at the heart of all our discussions?

[Norman Lamb]

I very much will do that. I have specifically talked to Simon Stevens about that. I am conscious that time is tight, so let me just mention one or two specific things. First, there is now movement on people getting plans for leaving institutional care. NHS England expects that clinical commissioning groups and its area teams will discharge or transfer 35% or 892 of the 2,615 people currently in in-patient settings within the next 12 months. That is 385 within three months, 266 within six months and 241 within 12 months. That is what they have come up with in terms of going through individual plans. We now have to ensure that it happens, and there is no guarantee in my mind that it will happen, so we have to hold the system to account.

I have mentioned that we have to unlock barriers wherever they exist. For me, one of the barriers is this. When someone transfers from the responsibility of NHS England to the local authority, the responsibility for the funding transfers to the local authority. That creates a disincentive for the local authority to take responsibility for that person, so the money has to flow with the individual. We have to ease the transition and not make money a barrier to an appropriate transfer to supported living in the community.

I have also mentioned that we have to address the question of the clinical judgments. That is not to say that in individual cases a clinician will not be making their best judgment about an individual’s need to stay in a particular setting, but surely the family need access to a second opinion to be able to challenge that judgment. I am conscious—I say no more than this—that the clinicians who are making the judgment are often employed by the organisation that is receiving payment for providing the bed to the individual. Whether it is in the state sector, the independent sector or the voluntary sector does not matter. The right to a second opinion is essential.

In the moments left to me, let me say that I remain totally committed to getting the culture change that we are all after. What has happened so far is not acceptable.

16:59

Sitting adjourned without Question put (Standing Order No. 10(13)).