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4 Nov 2009 : Column 253WH—continued

However, there is absolutely no doubt whatever that the Government want to solve the problem, and I genuinely believe that that is not just because of the force of Back-Bench opinion or the campaigning quality of the thalidomiders themselves. I understand that Nick Dobrik considered getting elected to this place for South Cambridge, in order to take the matter further, which is a rather desperate remedy in the current circumstances, and I would not necessarily advise him
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to follow it through. I would like to believe that ultimately the Government will accept that there is genuine force in the arguments that are being presented.

There are two solutions still on the table: one is the Government's preferred solution, which is to pilot personal accounts and direct payment initiatives; the other, which is from the Thalidomide Trust, is to accept the costed financial plan that it presents and use ex-gratia payments. In judging the two options, we must remember that we are not just gauging the needs of those who happen to be disabled by circumstance; we are considering people who could have lived totally different lives had commerce been more feeling or the Government more vigilant. Yes, it is a matter of meeting needs, but to some extent it is also a matter of restorative justice.

The Government's favoured solution is to use an embryonic mechanism of direct payments-a pilot-for an uncharacteristic, small, diverse and widely spread group, to be administered by local bodies with limited funds and, it has to be said, limited knowledge, expertise and skill. In any case, such a scheme would be time limited and means-tested.

The alternative suggested by the trust is to use a tried and tested organisation of unquestionably the highest probity that is intimately linked to the recipients of the benefit and is aware of the task it faces. When confronted with that analysis, the next step seems fairly obvious. The Government's duty and the road ahead are clear. The Government might not necessarily want to take a step down that road today, but they need to take the matter away from the Floor of the House, sit down with Nick Dobrik and the trust, look at the plan, look again at the problem and produce what everyone in this room wants: a permanent, just and workable solution.

10.26 am

Mike Penning (Hemel Hempstead) (Con): It is a pleasure to participate in a debate on a subject that I am surprised took so long to be discussed. I am not surprised that the hon. Member for Staffordshire, Moorlands (Charlotte Atkins) has brought the matter to Westminster Hall, considering the campaigner she is. It was a pleasure to serve with her on the Select Committee on Health.

The campaign that has, frankly, been run so brilliantly by the Thalidomide Trust and the advisory board has been strong, sensible and very active. The hon. Member for Southport (Dr. Pugh) alluded to the fact that, a few months ago, one or some of the thalidomiders considered standing for election-perhaps Cambridgeshire is not quite the place, but certainly having that sort of campaigner in the House would be a credit to the House and not a hindrance.

I have met representatives of the Thalidomide Trust many times. We have had robust, but open and honest discussions. My door will always be open to them now and in the future. Their ability to fight for their rights, friends and fellow sufferers is a tribute to them. As we have heard today, the experts assumed that they would all be gone by now and the problem would be over because perhaps they would not have lived this long. As someone who was born in 1957, I am conscious of how close my parents were to the taking of this drug. My mother tells me that she suffered enormously with morning sickness so, but for the will of God, I could be sitting in the Public Gallery listening to the debate now.
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I pay tribute to the ferocious tenacity of the thalidomiders. As we heard from the hon. Member for Gower (Mr. Caton), the chair of the all-party group on thalidomide, their parents were worn down. This group of people are not going to be worn down, and that is obvious to all of us.

I have listened intently to the debate and heard the responses of hon. Members, some of which I am sure the Minister will reiterate. It is enormously difficult when such a diverse group of people have had their lives blighted by one cause, but they have needs that are completely individual. I do not think that one single thalidomide victim is identical to another. Their problems might be similar, but they are not identical. I find it difficult to understand how a pilot group of 20, 30 or 40 people could replicate the needs of all 363 people who need help. I shall be interested to hear from the Minister how he expects a pilot project that is based around the primary care trust structure to work, given that some PCT areas have no people who suffer from the effects of thalidomide, and others have numerous sufferers, each one of whom will be different.

The expertise that the trust has acquired over the years, not least through help from universities such as the university of Leeds, is the sort of knowledge that we need to take this matter forward. We need to draw a line under this issue. The thalidomide campaigners need to stop having to campaign; they need a rest. Having met them on many occasions, I know that they are exhausted, but I also know that they will not give up.

Mr. Gregory Campbell (East Londonderry) (DUP): In outlining his thesis, the hon. Gentleman has clearly established the diversity of the victims' needs. Given the diverse nature of PCTs and the different ways of administering health care across the UK, does not that make it all the more important that the issue should be taken beyond any pilot and resolved immediately? No one doubts the Government's intent, but we need a resolution.

Mike Penning: I completely agree. I do not think anyone doubts that the Minister and the Government want to help, but the debate is about how to do that and how we can be fair to all the individuals who suffer from the effects of the thalidomide drug. I do not suggest that this matter can be dealt with once and for all, because people's circumstances will change as they get older, but we certainly need to get past the current situation in which many of those people are suffering in ways that none of us can comprehend.

The very nature of this issue means that people have different needs. Health needs have been discussed, and the hon. Lady mentioned that some victims have already had joint replacements, but for many sufferers that would not be possible because their joints are not replicable. Some people's joints cannot just be replaced tomorrow because they are unique as a result of their condition. It is very difficult to see how all those needs will be met by PCTs around the country.

As well as health needs, those people have other needs relating to their quality of life, especially as they move into their 50s and, we hope, into their 60s and 70s. I am sceptical about how personal health budgets will work, because many thalidomide victims do not have
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health needs today, but have other needs that are not part of the health budget. They think it important that the Minister addresses this issue, and I am sure that he is toying with that idea and fighting with his own Department about how it can be addressed. I repeat that thalidomide victims are exceptional cases, and that there are no replicated cases. I am pleased that the Government have already addressed the tainted blood problem. I had the honour of being the chair of the all-party group on haemophilia before I came to the Front Bench.

Thalidomide victims need help today. How are we going to cross the Rubicon between what the trust, the advisory board, the all-party group and the campaigners feel needs to be addressed today, and the Government's position? The Opposition's view is that there should be an independent review of all the medical needs of thalidomide victims. That review has to be independent; it has to be carried out away from the Government, the Department of Health and the trust, because although the expertise is there, there will always be a scepticism within the Department. I call on the Government to announce an independent review to assess the individual needs of all thalidomide victims. If they do not do that, and if the Conservative party forms a Government, it will announce a review immediately after the election. Our review would look at the capacity of the Thalidomide Trust to assist its members, at how the NHS is addressing the needs of thalidomide victims, and at how local authorities and the Government in general are assessing their needs. That is the least that we could do. The review should report within three months, and the Government should then come forward with proposals on how the long-term needs of thalidomide victims will be addressed.

10.35 am

The Minister of State, Department of Health (Mr. Mike O'Brien): Let me begin by joining in the general congratulations to my hon. Friend the Member for Staffordshire, Moorlands (Charlotte Atkins) on securing the debate on this enormously important issue. We have heard several passionate contributions to the debate-from my hon. Friend the Member for Gower (Mr. Caton), my right hon. Friend the Member for Knowsley, North and Sefton, East (Mr. Howarth) and my hon. Friend the Member for Bedford (Patrick Hall), as well as from the hon. Member for Wyre Forest (Dr. Taylor), with his historical knowledge of the situation. We have also heard from the hon. Members for Banbury (Tony Baldry) and for Southport (Dr. Pugh). The contribution of the hon. Member for Hemel Hempstead (Mike Penning) was slightly disappointing, in that he simply proposed another review.

We need to clear the decks a little regarding what the issues are. The hon. Member for Banbury is right about my having been given the traditional Minister's brief. Let me dispense with it and talk more broadly about the key issues. We can argue about the money, but that is not the issue, frankly. The issue is whether people have health and care needs that must be addressed. The national advisory council of the Thalidomide Trust has put to me its views about thalidomiders' concerns about their health. I accept that many of their health needs are changing and increasing. For some of the people who have survived thalidomide and received compensation
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in the past, through Diageo, Distillers and the Thalidomide Trust, and who are receiving some payments, their life expectations have changed substantially since those agreements were reached. I accept that entirely, and we must now look at the implications of the situation. We must look at their health and care needs and consider how they can best be addressed.

We can argue about history and about money, but the main issue is working out the main health-care needs of thalidomiders. The issue is one of liability. The Government could set out their position at some length, but I do not propose to do that today, because I want to concentrate on the future, rather than the past. Let me make it clear that I accept that there are increased health needs that now need to be addressed. Some of my proposals would probably cost more than what the NAC is asking for in its discussions with me, so I repeat that the issue is not money.

Dr. Pugh: Will the Minister give way?

Mr. O'Brien: Let me just explain what the issue is about. It is about how we can best address people's needs. I do not have a fixed view on that. I have had a couple of meetings with the NAC and I am grateful to it for coming along and putting its case for ex-gratia payments to me clearly. I am considering its case, but the issue is difficult-I shall not go into all the arguments-and I have put an alternative proposal to the NAC. My proposal would involve similar amounts of money to those that are likely to be paid, but they would be paid somewhat differently. I have asked the NAC to work with us on my proposal-to work through the iterative process of identifying the detail and how we could help. It might be that my proposal would not work, or there might be more to consider regarding the NAC's proposal. We need to find some way of dealing with the matter together. I want to go through that process of looking at the detail; I want to examine the health-care needs of thalidomiders, consider how those needs can best be addressed, and look at the best way of doing that.

I will come on to the various concerns that my hon. Friend the Member for Staffordshire, Moorlands, expressed and deal with them in detail; I think that I have enough time to do that. First, however, I want to be clear that we are not proposing that only 20 people should be involved in the pilot. I want to find a way of using the considerable skills and knowledge of the Thalidomide Trust to ensure that the health needs and care needs-I will outline in a moment why I use those terms separately-will be addressed financially and with regard to provision. I agree with my right hon. Friend the Member for Knowsley, North and Sefton, East that there is a great deal of skill in the trust that we need to access. We can use its historical knowledge, the knowledge of the individuals in its database, and the trust that it has won from thalidomiders to ensure that needs are properly addressed.

I propose that we work with the Thalidomide Trust to consider individuals who have particular needs, to assess those needs, and to identify a project that will enable those health and care needs to be met. I accept that those needs will, as my hon. Friend the Member for Gower said, include a need for care hours, help with cleaning and gardening, adaptions to homes and cars,
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and a range of other things. We must find out how we can best address all those needs.

Tony Baldry: The Minister acknowledges that those health and care needs will involve funding, but will he clarify whether that funding will be allocated specifically to primary care trusts and ring-fenced, or whether it will go directly to the Thalidomide Trust? I hope that he will not take it amiss if hon. Members would like to understand exactly where the money will come from and where it will go to.

Mr. O'Brien: I will happily set that out in a moment, because hon. Members will want to know how that money could be channelled if we reach agreement.

Dr. Pugh: Earlier, the Minister referred to changing health needs. One limitation of an independent review is that we will only capture the needs at a particular time. I sense that many people are looking for a mechanism that would give them security for the future, whatever their needs. Some of those needs are imponderable, and we cannot work them out at the moment because we have never had thalidomide in the world before, and hopefully will never have it again.

Mr. O'Brien: We need to ensure that needs are properly assessed. The Thalidomide Trust has a mechanism, and I want to assess the sort of help that its beneficiaries need. I want to work with the trust to see whether that is a good way, for our purposes and those of public funding, of assessing the needs of individuals. It may well be that it is, but we need to look in detail at how the trust assesses needs and distributes funding, because we might learn something from that; there might be a mechanism that, with some work from my officials, we can use.

With regard to the proposal, we are looking at whether we can use the current legislation for social care, and the legislation that is going through the House for individual budgets for social and health care. We are looking at joining them together and then identifying about 20 individuals across a range of disabilities, whose needs would be assessed for a pilot. We could then put funding in place. The detail is still to be worked out, but the idea is to work with the trust and direct funding through it to ensure that individuals' needs are met in an agreed way.

Those needs can be various; they can range from adaptions to vehicles and help with musculoskeletal problems to assistance with particular health-care needs. Long-term conditions often entail particular kinds of health-care needs. All those requirements could then be identified within a budget. That would not include admissions to hospital; they would continue to be covered separately, but health-care needs that do not involve admission to hospital can still be considerable.

I have identified the figure of 20 because that might enable the university of York and the other institutions that are assessing the pilot to determine whether it is a success and adequately delivers what we want it to deliver. I am clear that the figure of 20 is not a maximum; it could increase to 400 or beyond, if necessary. The figure of 20 is used only for the purpose of the assessment. We would want to work with the trust to determine whether the project shows the best way to help people
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with their conditions. I agree with the hon. Member for Banbury that those conditions are often varied and multiple, so we need to be able to assess the corresponding needs.

My hon. Friend the Member for Staffordshire, Moorlands asked how the level will be calculated for individuals. We hope that it will be calculated by an agreed assessment, and we want to work with the trust to see what it identifies as the individuals' needs, how they can best be helped, and how much that will cost. We will then identify a sum.

The hon. Member for Banbury rightly asked where that sum will come from. It will come from the place where individual budgets will come from: from the money that will be identified for social care, and the money that will be identified for the health needs of individuals. The cost of meeting health-care needs will come out of primary care trust budgets, and the cost of meeting care needs will come out of social services budgets.

We want to identify individual budgets as a national project on which we will engage with the Thalidomide Trust, if that is the right way to proceed. With regard to health, the funding will be led by one primary care trust, which will work with the others to bring the funding together and ensure that it is directed into the appropriate channel. We would work with the various local authorities to identify the social services budgets and bring them into a central pot that would be directed through the Thalidomide Trust, if that is what is agreed-I say that because there is still much negotiation to be done.

My hon. Friend the Member for Staffordshire, Moorlands asked whether we will help with the costs for the trust, and the answer is yes. I have already identified a particular sum that would be available, and that would be a matter for negotiation. I do not want to have negotiations in public. I have had several useful meetings with the national advisory council of the Thalidomide Trust, and I want some confidentiality in respect of the details of those negotiations, so hon. Members will forgive me if I do not identify a particular figure.

Mr. George Howarth: The Minister has helpfully described how he intends to work with the Thalidomide Trust to try to find a way of taking the issue forward. If during those discussions the trust can demonstrate that a scheme could be brought in without the need for piloting, would he be open to that?

Mr. O'Brien: That would not pose an insurmountable difficulty, but let me pause there a little. The legislation being taken through the House in respect of the health budget-not the social care budget-deals with pilots and enables us to run a pilot to identify the issues. Although the circumstances of thalidomiders are, in many ways, unique, the project-if it works-need not be unique. Other groups that work with organisations might benefit from an extension of it in the long term. I give no guarantees about that; we will have to see how it works.

I shall go through some of the questions that I have been asked. How would things be organised, given that
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thalidomiders are so spread out geographically? It is certainly true that we would involve various PCTs and social services, but the Thalidomide Trust currently provides help to many thalidomiders directly, so we would use the trust to deliver many of the services to individuals. Services could be purchased from various sources. They could be purchased privately, from the voluntary sector, or from local authorities, using available funding. It will be possible to provide services on a diverse geographical basis, just as it is possible now, for many thalidomiders.

I was asked what happens in 2012 when the pilot ends. If the pilot works, I hope that the project will continue. If it does not work, we will have to identify the problems and try to address them. We will have to try to ensure that a project is put in place that does address the health-care needs of thalidomiders.

Let me be clear about this: I am talking about a pilot. I want to see how it works and whether it could help other groups, too. I do not yet know all the answers. However, I am not arguing about money. The figures that are generally used range from £8 million to £12 million-I have seen various figures-and the scheme that I am suggesting could be in that realm, if it applied to all thalidomiders.

I will not get into a historical argument about liability. I want to address health-care needs. When the thalidomiders came to me, they said, "We have increased health-care needs. We want the Government to address them." That is a perfectly straightforward and completely legitimate point of view for them to take, and it is one that I accept. The issue is how that can be done, and how quickly we can put a scheme in place. We do not need long reviews of three months or whatever. We could put the scheme in place from next year and start to identify the way-

Mike Penning: Will the Minister give way?

Mr. O'Brien: I referred to the hon. Gentleman's proposal and will give way to him in just a moment. We need to be able to put a scheme in place as soon as possible-in the early months of next year-and we need a clear way of discussing with the Thalidomide Trust how we will take it forward.

Mike Penning: The Minister referred to a long inquiry. If the inquiry started today and finished three months from now, he would still possibly have three months in government before the general election. We still do not know whether the pilots, which will take place between now and 2012, will work-he admitted that a few moments ago-whereas an independent inquiry, today, into the long-term needs of thalidomide victims could be carried out quickly. The matter would not be kicked into the long grass, but dealt with today.

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