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House of Lords

Tuesday, 10 March 2009.

2.30 pm

Prayers—read by the Lord Bishop of Rochester.

Learning Disability: NHS Residential Accommodation


2.37 pm

Asked By Baroness Boothroyd

The Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham): My Lords, the Government are making good progress towards the commitment announced in Our Health, Our Care, Our Say, published in 2006, to close NHS residential accommodation—campuses—for people with learning disabilities by 2010. In August 2007, about 2,100 people lived in NHS campuses. By October 2008, the number was about 1,000. The Government’s commitment to measuring progress in the campus closure programme is part of the Valuing People Now published delivery plan.

Baroness Boothroyd: My Lords, while thanking the Minister for his reply, I must express my concern about the uncertain future of people with profound and multiple learning disabilities. Will he confirm that their dispersal from NHS campuses has no statutory authority, contrary to the impression that many NHS authorities have given? Is he aware that local authorities have no legal obligation to provide 24-hour care services and that some have abandoned plans to build special housing? Will the Government ensure that these vulnerable people are properly assessed for living in the community as the law requires and, if those obligations and the White Paper commitments are not implemented, will the Government consider postponing next year’s deadline?

Lord Darzi of Denham: My Lords, I agree with the noble Baroness. Many people who are still in campuses need very high levels of support—for example, those with physical or sensory disabilities as well as their learning disabilities, or even complex behaviours that compose a challenge for services. Government policy is clear: everyone could benefit from good support to live in the community if that support is tailored to their particular requirements. I cannot stress enough what at local level that personalised care should be about. The noble Baroness also asked about the statutory powers. The White Paper does not have the effect of statute and did not create a mandatory duty to close NHS campuses. However, there has been extensive public involvement and consultation carried out nationally and in the lead-up to the White Paper.

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Lord Pearson of Rannoch: My Lords, I declare as usual my interest as the father of an adult daughter with severe intellectual impairment. Are the Government aware that the families of many, if not most, of those compulsorily moved out of long-stay institutions now believe that their relatives have suffered much under care in the community and were in fact better off before? Would it therefore not be better to leave the remaining facilities permanently open and to concentrate on their appropriate expansion, rather than to continue with the programme of closure?

Lord Darzi of Denham: My Lords, it is understandable that friends, families and carers might have anxieties about whether someone’s needs will be adequately met through supported living in the community. However, all planning for the future of people living in campuses must be based around person-centred planning. We believe that NHS campuses are no longer appropriate, because they were originally designed for groups and not individuals. These new services will be much more able to respond positively to what people actually want in their day-to-day lives.

Baroness Barker: My Lords, what means of redress is available to an individual who finds that when he or she has moved to a community setting their level of support has decreased?

Lord Darzi of Denham: My Lords, redress to the local PCT or health authority is available. I re-emphasise the point that, prior to any move occurring, that move needs to be tailored around the needs of the patient as well as their families and carers. In the history of this policy, more than 1,000 people have moved into the community. I have numerous examples of very satisfied people. For example, in Hampshire, two brothers were living in a large group on a campus, but their elderly mother lived too far away to visit regularly. They now share a house close to their mum and have good support.

Viscount Tenby: My Lords, now that the transfer of residential homes for those with learning disabilities from NHS stock to social services is well under way, will the Minister confirm that the Government will provide additional finance, not only because of the recession and all that that implies, but also because, as the Centre for Disability Research has recently stated, the annual increase in the rate of those who have learning disabilities is 5 per cent? I declare an interest as chairman of a residential home for women with learning disabilities and as a parent.

Lord Darzi of Denham: My Lords, to support this programme of closing NHS campus-style services, we made a commitment of £96 million in revenue grant, which is available for three years from 2008 to 2011, in addition to £175 million in capital grant. I have no doubt that the revenue grant will be reviewed regularly. I take the point and I will be more than happy to look into it further.

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Baroness Howe of Idlicote: My Lords, the Minister said that he has had comments from people about how satisfied they are with the provision that has been made in the community. Does he have any figures for the number of complaints that have been made where people have not been satisfied with the services?

Lord Darzi of Denham: My Lords, I do not have the exact figure, but I know what has been published in the media. I have come across three complaints. I understand that the most recent one, from Sutton and Merton, is already resolved. Three is a very small number in contrast to the 1,000 people who have already moved. It is always worth while reminding ourselves that this policy is about the right to lead the same kind of life as anyone else, with the same opportunities and responsibilities, and to be treated with the same dignity and respect.

Gulf War Illnesses


2.43 pm

Asked By Lord Lloyd of Berwick

The Parliamentary Under-Secretary of State, Ministry of Defence (Baroness Taylor of Bolton): My Lords, first, I am sure that the whole House will wish to join me in offering sincere condolences to the family and friends of Marine Michael Laski, Corporal Tom Gaden, Lance Corporal Paul Upton and Rifleman Jamie Gunn, who died as a result of injuries sustained on operations in Afghanistan recently, and to the family and friends of Sapper Patrick Azimkar and Sapper Mark Quinsey, who were killed in Northern Ireland on Saturday.

Turning to the Question, the Government have examined the report following its publication on 17 November. Noble Lords will be aware that the United States Department of Veterans Affairs has sent the report to the highly respected Institute of Medicine for review, and we await the outcome of this process before making any conclusions on the report.

Lord Lloyd of Berwick: My Lords, I thank the noble Baroness for that Answer. Does she agree that the massive report which has been furnished by the committee is itself a review of more than 1,800 scientific papers published on both sides of the Atlantic? What need therefore is there for any further review? Does she further agree that the causes of Gulf War illness identified by the Research Advisory Committee are both causes for which the Ministry of Defence was directly responsible in 1991? If so, when will the Government acknowledge that simple fact and offer the victims some hope of compensation?

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Baroness Taylor of Bolton: My Lords, the United States report is an important review of all the literature that has been published on this issue, with some new comments. The fact that it has gone to the Institute of Medicine is also an important factor, and it would be wrong for us to pre-empt what the outcome of that review might be. It is also important to realise that it is not just this country and the United States, but also those in charge in Australia, New Zealand and Canada who will be waiting for that particular review. In terms of the treatment of and compensation for the victims of Gulf War syndrome, as it is called, the principle should be that payment is made on the basis of need and the level of disability, and this is what happens with the war pensions scheme.

Lord Astor of Hever: My Lords, we on these Benches also send our condolences to the families and friends of the marines and soldiers killed in Afghanistan, and the two soldiers from the Royal Engineers tragically killed in Northern Ireland. The Minister will be aware that I have raised Questions in the past about the health of veterans’ children. Do the Government have any plans to conduct research into this issue?

Baroness Taylor of Bolton: My Lords, the Government have spent some money researching the health of victims’ children, but so far we have not found causal relationships. Obviously, if there were to be new evidence, we would be more than willing to look at it. We accept that there are still many puzzling features and indeed much contradictory evidence about many of the inquiries that have taken place.

Lord Morris of Manchester: My Lords, I share the gratitude of the noble and learned Lord, Lord Lloyd of Berwick, to my noble friend, but whatever happened to the peer reviewing of the research-based decision taken by the United States Government several years ago to accept motor neurone disease as a Gulf War-related illness, while the widows of British veterans of the conflict who have died of the condition still await parity?

Baroness Taylor of Bolton: My Lords, the House will be aware that the system for claiming support and medical help in the United States is very different from that which appertains in this country, and, indeed, veterans cannot get help with support or indeed with medical care unless they are able to give a name to an illness. The evidence that we have shows that of the age group that we are talking about, five people who have had Gulf War syndrome have died of motor neurone disease. In a similar norm in the whole community, the figure would be slightly higher. So I do not think that as yet we have any evidence to suggest that it is a causal link.

Lord Tyler: My Lords, has the interdepartmental group on organophosphates, which I think is called the Carden committee, considered the implications of this report for other victims of OP poisoning?

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Baroness Taylor of Bolton: My Lords, the committee to which I think the noble Lord refers was established by Defra and is called the Committee on the Toxicity of Chemicals in Food, Consumer Products and the Environment. It is undertaking a study to look at all the published literature, which is indeed vast, and we do not expect it to report until next year. Obviously it will look at any new evidence, but we still believe that the problems arise with acute exposure to organophosphates rather than the very low levels that could have been experienced during the Gulf War.

The Countess of Mar: My Lords, I declare an interest, as I know only too well from a personal point of view the effects of chronic exposure to organophosphates. Can the Minister explain why the Ministry of Defence and Defra have so much difficulty in accepting causation when a huge amount of literature indicates exactly what enzymes and cells are destroyed, permanently in many cases, by organophosphates? Why will they not look at treating patients with organophosphate poisoning? This is one of the worst problems that the Gulf War veterans have but they are not listened to by their GPs or by their consultants. Gulf veterans could give an awful lot of helpful information to consultants and doctors.

Baroness Taylor of Bolton: My Lords, my honourable friend the Parliamentary Under-Secretary of State in another place recently met the Gulf Veterans Association and the British Legion. It took some time for that meeting to be arranged, but my honourable friend offered to meet, discuss and follow up all these problems. As for organophosphates, it is a question of the level of exposure. There is no doubt at all that the effects of acute exposure are very serious. What are not so clear are the possible effects of low-level exposure, and work is still going on to try to clarify that.

Lord Walton of Detchant: My Lords, the report to which my noble and learned friend Lord Lloyd referred is an extremely comprehensive and authoritative document which well deserves further detailed study. However, I hope the noble Baroness will agree that there is a difference of opinion about the cases of motor neurone disease as between those involved in motor neurone disease research in the UK and those in the United States. In this country, research workers prominent in this field do not find convincing the case for relating motor neurone disease to Gulf War syndrome.

Baroness Taylor of Bolton: My Lords, I can confirm what the noble Lord has said. As I mentioned earlier, there are many contradictory findings in many of the inquiries that have taken place. The US Research Advisory Committee says that it is difficult to make simple conclusions about cause and result. We want to give priority to improving the health of Gulf War victims and to put our research effort into identifying beneficial treatments for the future. That has to be one of the things that we emphasise from now on.

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Health: Thalidomide


2.52 pm

Asked By Lord Ashley of Stoke

The Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham): My Lords, thalidomide victims are compensated through a private settlement which was agreed with Distillers, now part of Diageo plc, the company that marketed the drug in the United Kingdom, and the Thalidomide Trust, which was established to administer the annual payments to victims. Diageo continues to make annual payments to the trust, and I understand that under the most recent settlement Diageo has agreed to pay a total of £150 million into the trust fund by 2037.

Lord Ashley of Stoke: My Lords, I thank my noble friend for that response, but is he aware that it is very disappointing? The settlement with Distillers to which he referred was regarded at the time as an accomplishment and was warmly welcomed, but with the aging process and increasing costs, it is now regarded as a very poor settlement indeed. We require the Government to step in and set up a compensation scheme because they are responsible for thalidomide damage: the drug was distributed through the health service and there is a clear responsibility on them. I hope the Government will not lean on that settlement of over 40 years ago—it is out of date, out of time and inadequate—but set up a compensation scheme for the victims. In that way they will replace injustice with justice.

Lord Darzi of Denham: My Lords, we recognise that thalidomide victims are a special group who have been struck by a terrible tragedy that blighted their lives. We also recognise the tremendous contribution that the noble Lord, Lord Ashley, has made to that cause.

Back in 1974 the Government gave a grant to the tune of £5 million. In 1978 they gave £0.8 million. Most of that was related to the misunderstanding of the taxed treatment of the fund. In 1996 the Government made a final once-and-for-all payment to the trust of £7 million in recognition of the unique and tragic circumstances that surrounded the thalidomide disaster. The Thalidomide Trust has significant assets, and my right honourable friend the Secretary of State for Health has requested that officials should meet the trust to discuss some of the challenges facing it in the future.

Perhaps I may say where the UK victims are in relation to some of our European neighbours. Thalidomide sufferers in the UK receive typically about £18,000 a year, but those with more severe disabilities receive more than that. Victims in Ireland receive £4,000 while in Germany they receive £8,000. Let us not forget also that the NHS provides a healthcare system that is very different from our European

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neighbours, being universally available, tax-funded and free at the point of need. I hope I have reassured the noble Lord that the victims of this tragic incident are well supported not only through the trust, to which we are very grateful, but through the provision of health and social care.

Baroness Tonge: My Lords, I understand that only 457 thalidomide victims remain in this country. That is not a huge number, but their disability and difficulties are of course increasing as they get older; everyone understands that. Would it be possible for the Minister to ask the Thalidomide Trust to do an urgent individual needs assessment of each of those 457 people and then come back to the Government for supplementary income if it felt it necessary?

Lord Darzi of Denham: My Lords, as I said, my right honourable friend the Secretary of State for Health wrote to the Thalidomide Trust asking it to meet our officials. Unfortunately, that has not happened; it was refused. The noble Baroness will be aware that we have many initiatives within the NHS that will be extremely beneficial to victims of the thalidomide tragedy, including the musculoskeletal services framework and some of the direct payments that we have recently been debating in Committee on the Health Bill, as well as the emergence and development of prosthetic-limb technologies in the 1960s. Today, as noble Lords know, prosthetic limbs are provided free of charge throughout the NHS to such victims. There are many policies, but if the trust believes that we can help it with a needs assessment, we will be more than happy to do so.

Lord Morris of Manchester: My Lords, will my noble friend Lord Darzi say what effect the change in the law now on Crown immunity could have on any assessment today of the responsibility of the National Health Service in this medical disaster, as the prescriber of thalidomide?

Lord Darzi of Denham: My Lords, I agree with the noble Lord. Back in the late 1950s and early 1960s the regulations on the prescription and approval of drugs were different from those at the moment. We should recognise the tremendous amount of work that has gone into the marketing, testing and regulation of drugs, as encapsulated in the Medicines Act 1968, from which society has benefited greatly.

Lord Hunt of Wirral: My Lords, I had not planned to intervene but do so now from the Back Benches. I declare an interest: I acted for one of the victims of the thalidomide disaster. Thanks to the noble work of the noble Lord, Lord Ashley of Stoke, the individual concerned—who, sadly, has recently died—received damages in that case. However, the original settlement was only 40 per cent of the damages to which she was entitled. She received the largest sum, but there was still a 60 per cent shortfall. Will the Minister please look again at the lack of seamless care between social services and the National Health Service? It is causing

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problems for those who, as the noble Baroness just mentioned, are still alive but are not getting the treatment that they should receive.

Lord Darzi of Denham: My Lords, I am not entirely sure whether the case was against the state or against Diageo.

Lord Hunt of Wirral: My Lords, it was against the defendants at the time. The noble Lord, Lord Ashley of Stoke, ran a tremendous campaign and, as a result, damages were achieved, but they were only 40 per cent of the entitlement.

Lord Darzi of Denham: My Lords, I am grateful for that explanation and will look into this further. I have spent the past 18 months in your Lordships' House trying to address the issue of integration between health and social care. As the Health Bill goes through, with your Lordships’ support, we will see some of the fruits of that.

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