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Thalidomide Survivors

Volume 503: debated on Thursday 14 January 2010

With permission, Mr. Speaker, I wish to make a statement about help for thalidomide survivors. Between 1958 and 1961, the drug thalidomide was used by expectant mothers to control the symptoms of morning sickness. Tragically, this led to many babies being born with often severe physical disabilities. There are currently 466 thalidomiders, as they refer to themselves, who are beneficiaries of the Thalidomide Trust. The Government wish to express their deep sympathy for the injury and suffering endured by all those affected. I will say more about that in a moment.

I am pleased to report that the Government will now fund a £20 million, three-year pilot scheme to help meet the health needs of thalidomide survivors in a more personalised way. Funding has been found from existing departmental central contingency budgets. The scheme will be operated by the Thalidomide Trust, which will use its considerable expertise and knowledge of its members’ needs to distribute money to survivors. They, in turn, will invest the money in adaptations and other preventive measures that are likely to reduce long-term demands on the NHS.

In recent months, I have met the national advisory council of the Thalidomide Trust on a number of occasions, and it impressed on me its concerns about the continuing and increasing health needs of thalidomiders as they approach older age. This additional funding will help to meet their complex and highly specialised needs, and to reduce further degeneration in their health.

There will be clear principles for the use of the money. It will be used to explore how the health needs of thalidomide survivors can best be met in the longer term. It will also be used to look at the effectiveness of the scheme and how this approach—of working through an expert national body—might be applied to other small groups of geographically dispersed patients with specialised needs. The evaluation will be focused on thalidomide survivors in England. However, as the Thalidomide Trust has discretion in how it uses its funding, we expect that survivors living outside England will also benefit.

It is important to acknowledge that this announcement builds on work done with thalidomiders in past decades by Lord Morris of Manchester and by Lord Ashley of Stoke. Lord Morris, appointed as the first Minister for Disabled People in 1974, made Distillers, the then owners of the thalidomide drug, establish a trust fund for affected children. Lord Ashley has tirelessly campaigned for greater recognition of the effects of the drug and the needs of thalidomiders, which has also led to improvements in drug safety. The work of Harold Evans and The Sunday Times should also be acknowledged, as should the campaigning by a number of current Members of this House.

While the Government are taking positive steps to help thalidomide survivors, the contribution of the Thalidomide Trust to supporting survivors and their families cannot be overstated. I would also like to take this opportunity to pay tribute to the work of the trust, its officers and, in particular, to the members of the national advisory council, which has worked tirelessly to champion the cause of thalidomiders.

Importantly, let me make the following statement on behalf of the Government, as I know that many thalidomiders have waited a long time for it; it has been agreed with the national advisory council. The Government wish to express their sincere regret and deep sympathy for the injury and suffering endured by all those affected when expectant mothers took the thalidomide drug between 1958 and 1961. We acknowledge both the physical hardship and the emotional difficulties that have faced the children affected and their families as a result of this drug and the challenges that many continue to endure, often on a daily basis. In the light of what happened, a complete review of the machinery for marketing, testing and regulating drugs was initiated, including the enactment of the Medicines Act 1968, which introduced further testing for medicines prior to licensing to ensure that they met acceptable standards of safety and efficacy.

I thank the Minister for letting me have an advance copy of the statement, and I am sure that all Members, and everyone we represent, would want to echo the Government’s sincere regret and deep sympathy for the injury and suffering endured by all those who were affected when expectant mothers took thalidomide between 1958 and 1961. I know that every Member on both sides of the House has the deepest sympathy for thalidomide survivors, and although no course of action will ever be able to make full amends for the injury that was caused by the use of this drug, I hope that the Minister’s statement will offer them an increased sense of security for the future and give them the prospect of dignity as they grow older, with the extra burdens among survivors that are increasingly becoming apparent. They deserve our fullest respect, admiration and practical support.

During my time as a Conservative shadow Health Minister—and also before that, when I held an industry brief—I have been in touch with a number of thalidomide survivors, and I have been in continuing dialogue with the Thalidomide Trust and the national advisory council to it. I know that I speak on behalf of all Members on both the Opposition and Government Benches in paying tribute to both organisations for the different ways in which they have persevered in highlighting the cause and the needs of thalidomiders or thalidomide survivors—people use both those phrases.

The Minister’s announcement to the House today, and also to the public before Christmas, of a £20 million three-year pilot scheme to support thalidomiders in meeting their health and care needs in a more personalised way, including through adaptions and preventive measures, will be welcome news to all survivors and the organisations that have represented their cause over the years. It will also be welcome news to the general public, many of whom—like me—grew up at the time of the thalidomide tragedy and remember with sadness the emotional turmoil that many families of their generation underwent and continue to undergo.

Given the disability and discomfort that so many survivors have had to endure, it is absolutely vital to offer thalidomiders a firm guarantee this afternoon that the £20 million pledge announced before Christmas has been drawn from a sustainable source of funding. Can the Minister also confirm whether the £20 million will be transferred to the Thalidomide Trust in a lump sum or in instalments, and from which central budgets the money will be drawn?

Thalidomide campaigners have long recognised that it is the Government who have the power to find tangible support for survivors. Over the years, many Members on both sides of the House have lobbied hard for the Government to take action, and many have done so to represent the plight of constituents who are thalidomide survivors—some of whom are here today to watch our proceedings. As my hon. Friend the Member for Banbury (Tony Baldry) pointed out in the Chamber on Tuesday, it is therefore slightly disappointing that the Minister has taken so long to inform the House of his intention to make this further money available to thalidomide victims, following his announcement before Christmas. However, that is such a small point that it should not overshadow the welcome news confirmed in the statement. I and all my colleagues will be pleased to report the Government’s pledge back to our constituents as evidence that their campaigning has made a difference.

It is right that the Thalidomide Trust and the NAC will decide how and where this money is spent. They represent thalidomiders and they are the experts on their needs. It is the trust and the members of the NAC who can and must be trusted with that urgent and vital responsibility.

I welcome the Minister’s remarks. Thalidomiders have waited a long time for this. I look forward to witnessing the impact that the funds confirmed today will have in creating better prospects for the health and well-being of thousands of thalidomide survivors and their families, and I salute their courage and example.

I thank the hon. Gentleman for the way in which he has responded to the statement. He raised two points: the timing of the statement, and the source of the funding. We had hoped to make a statement before the Christmas recess—and I had told the NAC that I would try to make the news public so that, if possible, thalidomiders would know about it before Christmas. Unfortunately, due to some internal issues in respect of funding and some legal issues that we wanted to resolve, we were not able to make certain final decisions until after the recess had commenced, but because I had made the commitment that we would try to get the message out before Christmas, I issued a press statement on 23 December so that thalidomiders were made aware that the £20 million will be available and that that has been confirmed. However, I wanted to make the statement of regret to the House, and that has now been done.

The £20 million in funding will be paid up front, before the end of the financial year, to the Thalidomide Trust as a lump sum. That was requested by the NAC in its negotiations, and we were able to agree to it. The ntmoney comes from the central contingency funds that are held by the Department, and therefore no funding will be diverted from other sources.

May I also strongly welcome the Minister’s statement? I accept entirely what he said about the timing of the announcement to the House; it was very important to put that information into the public domain, and I am glad he did so on this occasion.

I am also glad that the Minister paid tribute to the campaigners who have worked so hard on the issue—not only those in the trust, but those in both Houses of Parliament who have taken up the issue along with members of the press. There has been a long-standing and concerted campaign, and it has been conducted with enormous perseverance. We should pay tribute to those involved for what they have achieved. They have secured not only payments that were entitled from the successors to the original company that marketed the drug, Distillers, but also—oddly, perhaps, in the context of such an awful thing happening to so many people—the real benefit and advance represented by the Medicines Act 1968. I am glad that the Minister mentioned that, because it provides a huge legacy of proper and good regulation based on sound science. I hope the Minister agrees that these events underline the importance of having a proper testing regime with high vigilance following the issuing of a marketing licence, including—to make a controversial point—animal testing because that is the only way the gestation of drugs can be assessed. The Act is a lasting legacy.

Can the Minister confirm that the research on the needs of the thalidomiders that is part of this package will be relevant to a wider group of people who are now experiencing the onset of old age, with the disability and all the mobility problems that that involves? In some respects, we have little relevant experience of helping people with disability as they get older, so there are lessons to be learned here that can be applied to the wider community. I also welcome the fact that the Minister said no funding programmes will be de-prioritised as a result of the action he has announced today.

Tributes have been paid to Members in the other place. In addition, I want to pay tribute to Members of this House, and especially the hon. Member for Gower (Mr. Caton), who tabled early-day motion 779 in the last Session, which was signed by 275 Members from both sides of the House. If I may sound one note of dissent, I was saddened at the time that those 275 Members did not include the hon. Member for South Cambridgeshire (Mr. Lansley) and the Conservative Front-Bench team. I know that it was a matter of great concern for the Thalidomide Trust that those Members were unable to provide support at that stage. However, I entirely accept the comments made today by the hon. Member for Eddisbury (Mr. O'Brien), and I am glad that the House has come together to support this very important initiative.

I thank the hon. Gentleman for his welcome for the statement. I entirely agree that the campaigners on the NAC and the work of the Thalidomide Trust deserve our strongest support and thanks. He is right that the Medicines Act 1968 is an important legacy from a real trauma visited on a number of families. He is also right that this underlines the importance of the proper testing of drugs, including animal testing. I understand that one of the problems was that although some animal testing of thalidomide was done, it was not done on pregnant animals and, as a result, some of the evidence base was lacking. It is, thus, important that we now have a much better and more effective approach and that we continue to develop it into a better system of ensuring that we do not have another visitation of this sort of tragedy on families in the future.

The work and research that will be done will not, in a sense, be research into the individual thalidomiders; it will examine whether health adaptions can prevent the development of conditions that might develop if those adaptions were not put in place. It will have some wider relevance, but there is a uniqueness about the thalidomiders’ situation that we should not underestimate.

On the funding, no other budgets for patients or other NHS research facilities will be cut as a result of this measure—we are using central budgets. This is not without cost, because £20 million is a lot of money and it might well have gone on other things, but it is important that this has taken place and we believe that an important priority for the NHS is ensuring that thalidomiders have the opportunity of as healthy a future as possible.

May I, too, give my warm welcome to the Minister’s statement? I am chair of the all-party group on thalidomide, and the positive response that he has given to the campaign that we have supported, which has been led by the thalidomiders themselves, is excellent. I pay tribute to him, because he has provided a new pair of eyes, an open mind and, most important, a willingness to engage with thalidomiders that was not there before he took over this portfolio—he deserves enormous credit. He has rightly paid tribute, as I do, to the Thalidomide Trust and its national advisory council; Nick Dobrik and Guy Tweedy, in particular, have been working on this for an enormously long time. They have fought a very robust campaign, as many of us who have met them know, but they have done so out of care for their fellow thalidomiders.

I very much welcome the Minister’s expression of regret and sympathy. It accepts that what we had back in 1958 was not a lack of scientific knowledge; it was a failure of regulation. Does he agree that not only will that expression of regret provide comfort to the surviving thalidomiders, but it constitutes a tribute to their parents, who began this campaign many decades ago, taking on Distillers and its apologists?

I thank my hon. Friend for his comments, and I pay tribute to his work and that of the all-party group, which has strongly supported the national advisory council in its campaign. I agree that Nick Dobrik, Guy Tweedy and their colleagues have been robust in their campaign. I have on occasion been robust in response, but I have also sought, as my hon. Friend says, to apply an open mind to this matter. I have also sought to give a sense that I care about how it has been dealt with in the past and that we needed to make progress and identify a way to help the thalidomiders to deal with some of the health issues that they have convinced me that they would face if we did not provide this support.

When I talked to some of the family members, it struck me that the expression of regret was important for them. It is also important for many of the thalidomiders in recognising that some of the families who care for the most severely disabled thalidomiders have had a very difficult time for a long period. I pay tribute to the care that those families provide—they do this out of love and for no other reason. It is important to many of them that a statement of regret should come from a Minister on behalf of the Government collectively in this way and that, coupled with it, some extra help should be provided.

I echo the comments made by the chair of the all-party group, and I must say that the Minister does deserve genuine congratulations. In a Westminster Hall debate initiated by the hon. Member for Staffordshire, Moorlands (Charlotte Atkins), we all collectively exhorted him to abandon his “line to take”, and to listen to what the House was saying, reflect upon it and come back with a scheme. In fairness to him, I should say that he did exactly that; he has reflected on what colleagues collectively urged him to do. Would that more Ministers took the collective advice of the House on issues of this kind.

I suspect that one of the reasons why it has taken so long to obtain the expression of regret is that departmental lawyers throughout the generations have been terrified that any such expression would be construed as an admission of liability. Is there not a broader point here for the Minister, who is also a lawyer, to address? Perhaps the House should reflect upon this on some other occasion, but huge amounts of NHS funds are spent on paying lawyers’ bills—the Department’s lawyers’ bills and other people’s lawyers’ bills—when contesting cases of alleged negligence on the NHS. In any system of modern medicine there will always be times when things go wrong. Do we not need to try to find a system to resolve those issues whereby more of the available money goes to the patients and those who need it and less goes to the lawyers?

I thank the hon. Gentleman for the way in which he put his question. I, too, remember the debate initiated by my hon. Friend the Member for Staffordshire, Moorlands (Charlotte Atkins), and the meetings that I had, both before and afterwards, with some of the thalidomiders and their families made a profound impression on me.

The hon. Gentleman is right to say that we need to find ways to resolve much more quickly the wider issues in relation to negligence claims against the NHS. I have had experience of this with a constituent of mine, because we have been trying for some years to get a payment from the NHS for a negligence case. The distress and trauma caused by the delay in making the payment were very unhelpful, and we need to find ways to resolve these issues much more quickly. Sometimes lawyers come in for a lot of criticism, but on this occasion the departmental lawyers were very helpful in trying to resolve some of the issues about making this payment.

The hon. Gentleman is right to say that lawyers were advising Ministers over a long period that words had to be used with care because they carry weight and that caution had to be exercised in admitting liability. However, there are ways of saying things and of ensuring that the intentions and the thrust of what the Government want to convey are put across in a way that carries weight and deals with some of the legal issues. Department of Health lawyers were helpful in doing that. May I, too, add my thanks to the lawyers who represent the national advisory council, who were brilliantly helpful in ensuring that we were able to resolve these matters satisfactorily?

Thalidomide survivors have had to fight every step of the way to win justice. Clearly, the UK Government of the late 1950s shared responsibility for thalidomide and the disaster that occurred. I congratulate the Minister on doing the right thing. He did so first in expressing regret and sympathy, and in masterminding this settlement. He also did so in rejecting the calls from the Opposition when they asked for yet another review during my Adjournment debate in November.

Does my right hon. and learned Friend also agree that we owe a debt of gratitude to the thalidomide survivors, not only for their courage, determination and persistence in continuing with this campaign and fight for justice, but for the way in which they deal with their disabilities and the innovative way in which they have come up with solutions to the problems that they face in their daily lives? Does he not agree that they are role models to many people who struggle every day with the problems of disability because of the way in which they have worked together to find solutions? I congratulate them on the way in which they do it in such a determined but cheerful and comradely manner.

I thank my hon. Friend. She has played a leading part in the recent campaign, which has been very much in the tradition of the work done by Lord Ashley and Lord Morris, who have articulated many of the concerns of thalidomiders in this House and in Parliament as a whole. It has ensured that the thalidomiders’ voice is heard, and I pay tribute to her.

My hon. Friend is right that there is a lot to be said for the innovative and progressive way in which the Thalidomide Trust has been able to make provision for thalidomiders and to help them deal with some of the issues that they have to deal with. I share in her expression of congratulation to the thalidomiders as a whole on the way in which they have been able to deal with some of the disabilities that have been visited on them.

The hon. Member for Staffordshire, Moorlands (Charlotte Atkins) has just expressed in a far more eloquent way than I could the very point that I wanted to make. I shall make the point nevertheless, because it cannot be said too often. We talk about the victims, the tragedy and the people who have campaigned, but all too often we fail to talk about the mental strength and sheer moral courage of every single thalidomide victim who has had to cope with this disability from the moment of their birth. It is very important that we should pay tribute to the courage that every one of those people has shown. I am in awe of it.

I entirely agree with the hon. Gentleman about the mental strength and moral courage of many thalidomiders. I have seen that in my contact with them. May I add that there is sometimes a tendency for people who are physically able to feel somewhat sorry for people who have disabilities. When confronted by the robustness of Nick Dobrik, who has negotiated much of this arrangement and was recently reported in The Sunday Times as saying that sometimes he feels like Superman, one realises that people do not feel sorry for Nick. He has some disabilities, but he has that mental strength and moral courage, and I hope that one day we might see him in this House.

I warmly welcome my right hon. and learned Friend’s statement, but may I press him a little further on the position of thalidomiders in Scotland, such as my constituents Mr. Stewart Macleod and Mr. Alan Deegan? He said in his statement that the evaluation would be focused on survivors in England, but that he fully expected that survivors living outside England would also benefit. Will he explain how that will happen? Will it be entirely at the discretion of the Thalidomide Trust in England, or is there some formal agreement with thalidomiders in Scotland? Has he had any discussions with his opposite number in the Scottish Government to see whether they might be prepared to make a contribution to this pot of money that would ensure that thalidomiders throughout the UK will benefit equally—let us not forget that the damage was done well before devolution was ever thought of—as they are all affected equally?

We hope that the devolved Administrations will look at the settlement, recognise that there are a number of thalidomiders in Scotland, Wales and Northern Ireland, and feel that they can make a further contribution to the funding. Perhaps 15 per cent. of thalidomiders live in Scotland, Wales or Northern Ireland and a further 10 per cent. live outside the UK. The way in which the Thalidomide Trust has asked to be able to deal with this question is satisfactory to us. We will make the payments to the trust and it will determine the appropriate way of making payments to thalidomiders, including those in Scotland; the trust will adjust its funding arrangements so that thalidomiders in Scotland are helped appropriately. However, that will be an internal matter for the Thalidomide Trust. Funding from this Government on this occasion, because health is a devolved matter, will be for English thalidomiders, but the Thalidomide Trust will adjust its funding to ensure that Scottish, Welsh and Northern Irish thalidomiders do not lose out.

I add my congratulations to the Minister on his statement. It is no surprise to me that this has happened on his watch. May I ask him a question about the pilot scheme? I have no problem with the principle of a pilot scheme, but it is inevitable that people will move towards asking what will happen beyond that date. Three years is actually quite a long time to be considering that question. Will my right hon. and learned Friend at least leave the door open? If, during the three-year period, it becomes very obvious that the work of the trust is needed permanently in the future, can a review be held more quickly and the scheme be made permanent even before the end of the proposed three-year scheme?

My hon. Friend raises a good point. The scheme is a pilot and there is no commitment at this stage to go beyond the pilot period. Let me say, however, that we are looking at whether we can create a situation in which it is clear from the pilot that there will need to be a Government decision about future funding and a continuation of that future funding. There is no commitment at the moment, but the evaluation is necessary to determine whether the project has been a success. If it has been, Ministers would, we hope, decide that it could continue. It will be a decision, however, for Ministers. They might want to wait a little less than three years, so that there can be an indication to the Thalidomide Trust of how funding can be developed in the longer term. However, there will need to be research in the meantime into how the money is being spent.

I also add my grateful thanks to my right hon. and learned Friend for his statement today. We all have cases in our constituencies that we have had to bring to his attention. May I also pay tribute to the chair of the all-party group, my hon. Friend the Member for Gower (Mr. Caton)? He has also worked tirelessly on behalf of thalidomiders. I pay tribute to the trust, too, for the way in which it has lobbied parliamentarians. I listened very carefully to the Minister’s response to the point made by my hon. Friend the Member for—

From Scotland. His point was about the devolved Administrations. May I probe a little further on whether we could have a more formal means of working with the devolved Administrations? I would like to reach a situation in which thalidomiders in Scotland, Wales, Northern Ireland and England are not treated any differently. There could still be people out there who are not on anybody’s list, and I hate to think that there are some people in parts of the UK who might not receive the same service and financial support.

As Members have already said, some of the carers have left. They have become old and weary, and so the carers aspect of the question is also important. Thalidomiders are also getting older, and are perhaps having to rely on young carers to look after them, which is an issue. I am pleased that the Minister referred to the work that Lord Ashley and Lord Morris have done; I have been on other all-party groups with them. I also hope that it will be possible for the Minister to express his firmness and sensitivity when dealing with the blood contamination issues—perhaps at a later date.

My hon. Friend has raised a number of important points. We shall see whether the devolved Administrations are prepared to make a further contribution of perhaps £5 million between them, which would deal with the trust having to readjust its own finances internally to ensure that no thalidomider loses out. She is entirely right that there has to be a continuation of care, and that some carers are at an age where it is becoming increasingly difficult to continue caring. They may well need extra help, and I hope that that would be available as a result of this funding, but it is important for me to say very clearly that it is intended that this extra funding will affect neither the tax position of thalidomiders nor their access to the benefits to which they would otherwise be entitled.

My hon. Friend asked about Lord Ashley, and I join her in paying tribute to him. There is a uniqueness about the position of thalidomiders, but I have made it clear that, if the project shows that a national organisation with appropriate funding can make a real difference to the health care of a particular specialised group, that may have a wider application in the sense of establishing an administrative process to ensure that money is targeted in a way that best helps people with particular and sometimes unique needs.

May I endorse the comments made by my Welsh colleague my hon. Friend the Member for Conwy (Mrs. Williams) in congratulating my Welsh colleague my hon. Friend the Member for Gower (Mr. Caton), who has led the all-party group on this matter? I also want to reiterate the impact that the campaign has had on thalidomiders in Wales, Northern Ireland and Scotland. Would it be in order for the Minister to convene a meeting of Health Ministers of all those Administrations to discuss adopting a uniform approach across the UK?

My hon. Friend asks about convening a meeting, but Health Ministers are in regular contact in any event. The Government have certainly been in contact with the devolved Administrations about the settlement.

I entirely agree that we should congratulate my hon. Friend the Member for Gower (Mr. Caton), who has led the campaign in this House. We will be holding a reception at the Department of Health after this statement, which I hope some of the thalidomiders will be able to attend. I hope that my hon. Friend will also be able to attend, along with those who have been strongly involved in ensuring that the campaign was brought to a successful conclusion.