Learning Disabilities (Care in the Community)

(Limited Text - Ministerial Extracts only)

Tuesday 8th July 2014 Westminster Hall

[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.