Learning Disabilities (Care in the Community)

Margot James Excerpts

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.