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5 Mar 2009 : Column 329WH—continued

A constituent of mine, Anil Ramani, who is a resident in supported living accommodation, went on a day trip from his day centre in Edgware, known as “the Space”, to Aldenham country park. The carers did not count people on the bus, even though there were three members of staff for just nine service users. They left him behind, without even noticing that he was missing until two
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hours later. He was not found until 11.30 am the following day. He had spent the whole night in the park on a bench. I am told by Barnet social services that lessons have been learned and procedures changed, but after union representations the staff concerned did not lose their jobs, which I find remarkable.

The problem affects more than just the public sector, however. Last year, a small group of people with learning disabilities and their support workers went to a karaoke night at “The Bull and Butcher” pub in my borough. The manager was hostile, made it clear that he did not want them there and harassed them until they left in distress. An appalling case of discrimination in the private sector!

The provision of information in appropriate formats for adults with learning disabilities is crucial. We were struck by the lack of easy-to-understand, illustrated information—council forms and leaflets are not much help or use to people who cannot read. People with learning disabilities should be involved in advising on how to produce better, accessible information. We expressed concern at the absence of a cross-Government strategy to provide accessible information, and we were not reassured by the Government response, which dwelt on resource constraints and the need for individual Departments to comply with the Disability Discrimination Act 2005.

A far more proactive approach is needed to help public bodies meet the information needs of all the people they serve. The commitments in “Valuing People Now”, such as to consider how to promote locally accessible information for people with learning disabilities, focusing on the NHS, are far too weak. I hope that the Minister will look again at this matter, therefore. Is there scope for the Equality and Human Rights Commission to help with information provision on the most important public services? It has already produced an easy-read version of a guide to the Human Rights Act 1998, and I understand that it intends to produce one on the disability equality duty.

Access to independent advocacy may well be the only way that many people with learning disabilities can secure their human rights. That is particularly true of parents, those with complex and profound needs, and those involved in the criminal justice system. Self-advocacy groups are also extremely important. We called for a review of the availability of independent advocacy, but the Government did not respond to this recommendation. “Valuing People Now” talks about improving the impact of advocacy, but not about making advocacy more widely available. I hope that the Minister can reassure us, therefore, that advocacy will not be a Cinderella service, neglected by central Government and inconsistently funded by local authorities, but can be seen as part of mainstream support for people with learning disabilities.

Mr. Drew: Friends of mine are trying to set up such an independent group, and the biggest problem is the lack of an obvious route for grant finance. The difficulty with seeking local authority finance only is that people will not be entirely independent of that local authority. That could create problems if they have issues that they wish to raise with the authority. I know that promises have been made, but they urgently need to be translated into action.


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Mr. Dismore: I agree with my hon. Friend. Many advocacy groups are dependent on charitable funds and live a pretty hand-to-mouth existence.

The then national co-director for learning disabilities, Rob Grieg, was extremely candid in his oral evidence to the Committee about the difficulties of ensuring that policies for adults with learning disabilities are implemented, even within the Department of Health itself. There is a lot to welcome in “Valuing People Now”, but the key test is whether it makes a difference to the lives of the people whom it is meant to help. I hope that the Minister will champion “Valuing People Now” across Whitehall and to front-line staff delivering services throughout the country. He needs to show real leadership to turn the document’s policy commitments into real, tangible, measurable outcomes for adults with learning disabilities.

One of our criticisms of the original valuing people strategy was that it lacked measurable targets. “Valuing People Now” is an improvement, but it is still not clear how the activities set out in the delivery plan will be measured against the strategic objectives. For example, the office of the national director for learning disabilities is expected to work with other agencies to take forward a programme of work and to consider how mainstream housing policies can be made more inclusive by 2012. However, what will be the practical outcome of this work, and how do we expect housing provision to have been changed by 2012 as a result?

I mentioned earlier the UN disability rights convention, which consolidates and clarifies existing rights from a number of other international treaties into one document, and sends a powerful signal that the rights of disabled people matter. The Government signed the convention at the first opportunity and are now working towards ratification by Easter. Given that the initial target of ratification by the end of 2008 was missed, can the Minister confirm that the Easter target will be achieved? I received a letter from the Department on 3 March, with the explanatory memorandum for ratification, which has now been laid before Parliament, but I hope that we can have some more concrete assurances.

We recommended that the Government should sign the optional protocol to the convention, which will allow for a right of individual petition, and I congratulate the Minister on accepting this recommendation and signing it. I hope that the Government can now sign the various other optional protocols that allow for individual petitions to other conventions—our country has nothing to fear by doing so. We expressed concern at the delay in ratifying the convention, which at the time of our report the Government failed to explain, but it has since become apparent that various reservations are being proposed. We published a further report on that in January, because we are not convinced that any reservations are needed, and we were critical of the lack of transparency in the process. The number of reservations and interpretive declarations has now reduced, but we are still not satisfied that the remainder are necessary.

Some of the issues that we are debating today will be relevant to the Equality Bill—as pointed out by my right hon. Friend the Member for Coatbridge, Chryston and Bellshill (Mr. Clarke)—which the Government have promised to introduce during the current Session. For example, we expressed concern that public bodies are not taking a positive approach to the disability equality
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duty. That mirrors our finding in this and other contexts that public bodies do not consistently promote human rights and do not fully understand their positive obligations under the Human Rights Act. My Committee will closely scrutinise the Equality Bill during its passage through Parliament. Can the Minister confirm that it will be introduced immediately before Easter?

Mr. Andrew Pelling (Croydon, Central) (Ind): I begin with two apologies: first, I have an appointment in my constituency so I cannot stay until the end of the debate; secondly, I shall touch briefly on the issue of employment, and if the hon. Gentleman was coming to that, I apologise for pre-empting him. Does he feel that, in some ways, the Government’s promoting employment in the public sector for people with learning disabilities might be a way forward? Perhaps we could do that in the House. Benefiting from the advocacy of Mencap, I had the opportunity to employ someone with learning disabilities. It strikes me that that might be a way forward for other hon. Members. They could promote that positive approach on an occasional basis.

Mr. Dismore: That is a very worthwhile suggestion. As I said earlier, with the appropriate support people with learning disabilities are reliable and motivated employees. They simply are not given the opportunities that they should be, because of society’s generally low expectations of them. If they are given the chance, they will perform, as we saw on a number of our visits when we prepared the evidence for our inquiry.

The hon. Gentleman is right about Parliament. We have made a number of recommendations about how public bodies serve adults with learning disabilities, but how well does Parliament itself serve that group? We worked hard to engage adults with learning disabilities during our inquiry, but there is a lot more that we could do. For example, my Committee staff will prepare a summary of our debate today for publication in an easy-read version—Hansard is inaccessible to many people with learning disabilities. I have met the Commons outreach team and following on from that, I have written to the parliamentary authorities to raise the issue of accessibility. We will continue to press for that to be addressed. Indeed, I raised the matter during questions to the Leader of the House today when I asked about the importance of making such facilities available. I got—I think—a relatively positive response. I was told that the issue would be looked into. It is just not acceptable that adults with learning disabilities cannot access parliamentary material and services of relevance and interest to them.

In conclusion, our inquiry covered a wide range of issues in which the human rights of adults with learning disabilities were being routinely and deliberately ignored or casually overlooked. Such behaviour was found to be the main cause of the institutional abuse uncovered in Cornwall and Sutton, and by Mencap in its report. The Government are moving in the right direction, and I congratulate the Minister on publishing “Valuing People Now”. None the less, we need strong leadership. The Minister’s heart—and that of his predecessor—is in the right place. Moreover, the policies are right, too. The problem is the gap between such policies and the everyday experience of people with learning disabilities. There has been a lack of effective monitoring and we must plug that gap. We need a national culture change to recognise that people with learning disabilities have
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the same rights as everyone else. It is not just a question of being nice to “unfortunate people”. We must recognise their rights as equal citizens, and empower them by involving them in the development of policy and in the taking of decisions over their own lives. There is a very long journey ahead before the human rights of adults with learning disabilities are fully respected in the UK, and my Committee will continue to press the Government to do more.

3 pm

James Duddridge (Rochford and Southend, East) (Con): I congratulate the Committee and the joint Chair on the excellent work that they have done on this important subject. I welcome the opportunity to talk about adults with learning disabilities and, by extension, the rights of their families. Too many people with learning disabilities are not being respected, and that is demonstrated by recent examples in the health sector.

It gives me no pleasure to have to highlight a case that was brought to me by the mother and sister of Martin Ryan, whose avoidable death was highlighted by the excellent Mencap report “Death by Indifference”, which was published in 2007. Throughout his life, Martin suffered from severe learning disabilities, Down’s syndrome, epilepsy and he had no power of speech. The health service ombudsman, Ann Abraham, carried out an investigation into Martin’s death. I understand that, when that report is published later this month, it will highlight that the death of Martin Ryan was avoidable.

I have met my constituents a number of times to discuss the treatment that Martin received after having a stroke and being admitted to Kingston hospital in 2005. I believe that Martin’s case demonstrates how adults with learning disabilities are often not granted the full rights that they deserve when receiving medical attention. I apologise to the Committee for going through the details, but it is important to do so.

Martin’s case is an extremely distressing one. He was admitted to Kingston hospital after suffering from a stroke. As a result of the stroke, Martin was unable to swallow, which often happens with stroke victims, and could not consume food or drink. Martin was put on a drip, but was unable to extract adequate nutrition from it. During the second week in hospital, Martin’s veins collapsed, and feeding by a drip was no longer possible.

After Martin had gone without adequate nutrition for 21 days, doctors decided to put a feeding tube directly into his stomach. Sadly, Martin was not strong enough to undergo the operation. Five days later, he died in hospital after 26 days without food or nutrition.

Martin’s case has received a great deal of national press coverage in recent months. The coverage highlighted his care and the possible findings of the ombudsman’s report. I have considered the ombudsman’s report in detail with Martin’s mother and sister. The report will outline a combination of different failures that led to Martin’s death. It is also likely to find that Martin was put at risk because specialist stroke services were not provided for him and that numerous communication failures within the team resulted in him receiving inadequate care. Moreover, Martin’s sister, Ann Ryan, has told me that the ombudsman’s report will find that there were a number of service failures in the treatment and care
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provided by Kingston hospital. Shockingly, the ombudsman will find that the failures occurred primarily because Martin had a learning disability.

The omissions and failures of Kingston hospital and of the individual staff members who cared for Martin constitute a failure to live up to the principles of dignity, equity and autonomy for all individuals that are discussed in the report. The circumstances in which Martin Ryan died are alarming. It is clear that, owing to a catalogue of errors, his life was put at risk and that he died as a result of inappropriate care.

The ombudsman’s report will find that Martin’s death was avoidable and that a number of service failures by staff at Kingston hospital led to his death. Yet despite that, I am concerned that there has been no effort that I am aware of on the part of the ombudsman to hold to account the individuals responsible for Martin’s death. Although the chief executive of the hospital gave assurances that the medical professionals involved would be disciplined for their actions, no evidence of that has been brought forward, nor has the Ryan family received any dialogue in relation to that. Such a failure in communications following a tragic death is wholly unacceptable.

Martin’s mother and sister believe that the consultant, the matron and the ward sister at the hospital were responsible for the service failures that led to Martin not receiving adequate nutrition and for his subsequent death. They believe that the individuals should be named, brought to account and disciplined. Such a call is all the more necessary due to the fact that the service failures occurred because Martin had a disability. The family are not seeking revenge, but they want to ensure that those individuals are held to account. They do not want them to make the same mistakes again.

Naming the individuals in the ombudsman’s report—I ask the Minister to speak to the ombudsman about this—will send a strong message to professionals that they will be held accountable for their actions towards people with learning disabilities. If the ombudsman’s report does not name the medical professionals, I will name them in the House of Commons. Bringing such individuals to account is the right thing to do. As the report notes, it is essential to give people dignity and to treat them as individuals.

Finally, I hope that the Minister can exercise influence over this long-standing case—Martin passed away in 2005, and the “Death by Indifference” report was published in 2007. Naming the individuals would give closure to the Ryan family, and it would be in the public interest.

3.7 pm

Dr. Stephen Ladyman (South Thanet) (Lab): The hon. Member for Rochford and Southend, East (James Duddridge) has given us a horrifying example of what can happen when people do not fulfil their duties and do not honour their obligations to the patients under their care. Such patients have the same human rights as everyone else. My hon. Friend the Member for Hendon (Mr. Dismore) mentioned that some people do not recognise that. It is absolutely and explicitly accepted by the House that every human being has the same human rights and should have the same opportunities to exercise those rights. I welcome the fact that we are having this debate and that this report has been produced to provide some focus on the needs of people with learning disabilities. I congratulate my hon. Friend and the Committee on their work.


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Let me start with a little discourse about the human rights approach, which is very helpful in this instance, but it is not the only way to look at learning disabilities. I will probably get into trouble for suggesting that the human rights approach cannot be adapted to be comprehensive in its assessment of the issue. As I was telling my hon. Friend before the debate started, human rights lawyer Sonya Sceats, who was one of his witnesses—she is also the long-term partner of my stepson—is convinced that the human rights approach is a way of addressing many issues. Although it is a very good approach, there are complex ethical and practical issues about the way in which we address the needs of people with learning disabilities that require us to go beyond the human rights approach.

I was trying to think last night how I could express that. I was trying to unravel the earplugs from my iPod. I do not know whether other hon. Members have this problem, but however carefully I roll up my earplugs when I put them away, they are always tangled in a knot when I unwrap them, and it takes ages to get them undone. Imagine how much more difficult it would be if I had 20 sets of earplugs in a box and they were all tangled together. I would have to unravel them one by one and then find one with the right plug before I listened to my iPod.

The complex ethical issues that we are discussing are a bit like that. If we unravel just one strand of complexity by looking at someone’s human rights, we do not necessarily see the whole picture. With people who have learning disabilities, we have to look at not only the human rights issues, but the practical issues, the risks, the financial issues and the family issues. Sometimes, when we unravel those strands, they point us in different directions and lead us to different strategies and possibly to different answers to the same question.

Perhaps I can give hon. Members an example of what I am talking about. One issue that the report identifies is relationships between people with learning disabilities. One of the most fundamental human rights is that people should be able to determine for themselves what relationships they become involved in, and people with learning disabilities have exactly the same right to have sexual relationships as anyone else. However, when we face such issues and the situations that arise when people with learning disabilities have relationships, we have to ask a whole range of questions. Are the people involved in the relationship able to give informed consent? Do they have the ability to make contraceptive choices? If a woman with a learning disability becomes pregnant, that raises incredibly complex issues about parenting.

When a person with learning disabilities is in their parents’ care, it can be incredibly difficult to get the parents to accept that their child is as entitled to a sexual relationship as anyone else. My daughter does not have a learning disability, but I find it pretty difficult to accept that she has boyfriends. Imagine how much more difficult that would be to accept if she was a vulnerable child or a child with a disability. Sometimes parents end up having recourse to the courts, and attempts are made to get sterilisation orders or orders to restrict people’s ability to have relationships.


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