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Thalidomide Trust (Grant)

Volume 555: debated on Thursday 20 December 2012

With permission, Mr Speaker, I should like to report to the House on a new 10-year grant to the Thalidomide Trust to help it find more personalised ways of meeting the health needs of thalidomide survivors.

The current three-year grant, which comes to an end in March 2013, was introduced by the previous Government as a pilot scheme. Its aim was to enable the Thalidomide Trust and its members to explore more innovative ways of preventing further deterioration in the health of thalidomide victims and to help preserve their independence.

This Government are committed to improving outcomes for all disabled people and to supporting them to live independent lives. That is why we are pleased to be able to continue the excellent work begun by the pilot scheme through this 10-year commitment. Over the next 10 years, the grant will be in the region of £80 million. It will be paid on an annual basis, rising each year in line with inflation.

I was privileged to speak on this very subject on my first day as a Health Minister and then met, along with the hon. Member for Elmet and Rothwell (Alec Shelbrooke), the Thalidomide Trust and its national advisory council. They impressed on me the complex and highly specialised needs that thalidomiders have, particularly as they approach older age. At the meeting, members of the trust and a number of thalidomiders stressed the need for certainty and that any future grant would need to be for longer than just three years. I am delighted that we are able to give them that certainty.

Many thalidomiders have had to use their bodies to compensate for the damage to their arms or legs in such a way as to cause severe musculoskeletal problems, including lower back pain, sciatica, damage to the coccyx area and shoulder pain and stiffness. Treatments to relieve those symptoms, such as massage and physiotherapy, not only help to maintain their independence, but often mean that they can stay in work.

The Thalidomide Trust has provided evaluation reports for the first two years of the pilot scheme. I have read with interest how it has invested the money. It is clear from the reports that this scheme is the best way to continue to meet the complex needs of thalidomide survivors. One recipient of the grant has improved her independence by installing a table that rises and falls by remote control, enabling her to reduce overstrain on her muscles. Another recipient describes how regular physiotherapy and visits to the gym, paid for by the grant, have led to him losing weight, thereby relieving stress on his joints, reducing the pain and improving his mental well-being.

A small number of people said that they had reduced their need for prescription painkillers and the frequency with which they need to see their GP. The reasons for that varied, and included successful surgery, lifestyle changes and improved access to complementary medicines, but all of them were linked to the use of the grant. The continued funding will help individual thalidomiders to maintain control over their own health needs, because they are the experts in what really makes a difference.

There will be clear principles for the use of the money. It must be used only for health-related needs and it cannot be used to duplicate support provided through a different source, such as personal health budgets. The grant must also be used only for the benefit of thalidomide survivors living in England. Separately, the devolved Administrations will each consider how they will support thalidomiders after the end of the current three-year pilot, which is in March next year.

Naturally, the Department of Health will review the scheme annually to ensure that it remains the most appropriate use of funding and the best way of distributing it to those who need it. The trust will use its extensive expertise and knowledge of its members to distribute the funds to thalidomide survivors in England.

I pay tribute to the Thalidomide Trust. The contribution of both the trust and its national advisory council, many members of which are in the Public Gallery to hear this statement, cannot be overstated. The trust uses its expert knowledge to provide invaluable support to survivors of the thalidomide disaster and their families, while members of the national advisory council work tirelessly, despite their own impairments, in the cause of all thalidomiders.

Finally, I reiterate the regret and deep sympathy first expressed three years ago by the then Minister of State, Department of Health, the former Member for North Warwickshire, Mike O’Brien. We acknowledge the physical hardship and emotional difficulties faced by the children affected by this drug and their families, and the challenges that many continue to endure, often on a daily basis.

I commend the statement to the House and wish everyone, including all thalidomiders, a very happy Christmas.

I thank the Minister for the advance copy of his statement.

Thalidomide survivors waited far too long for Governments over many years to address the appalling physical and emotional difficulties that they faced as a result of thalidomide prescribed by the NHS from 1958 to 1961. The last Government took the first steps towards addressing this unacceptable situation. In January 2010, the then Minister of State rightly offered our sincere regret and deep sympathy for the injury and suffering endured by all those whose expectant mothers took the thalidomide drug. I want to repeat that sincere regret and sympathy today.

The previous Government also acknowledged the urgent need for extra help for thalidomide survivors to meet their care and support needs, by putting in place a three-year pilot scheme. The pilot, as this Minister said, has helped survivors to improve the quality of their lives and to cope with their increasing loss of mobility and independence as they get older by helping them to buy and put in place the things that they say make the most difference to their lives.

I welcome the Minister’s announcement that the Government will continue the scheme for 10 more years with a grant in the region of £80 million. That will mean a huge amount to the 431 thalidomide survivors living in the UK today. As the Thalidomide Trust says, the money will allow one survivor with no arms to buy the special adaptations she has been unable to afford, and a man with no legs to make a down payment on a van adapted so that he can drive it from his wheelchair. It will allow a deaf thalidomide survivor to continue to employ someone to be her signer when she goes out so that she can retain her confidence and ability to remain active and mobile.

I have a number of questions about the scheme that I hope the Minister will answer. He will be aware that Scotland, Wales and Northern Ireland made proportionate contributions to the fund set up by the previous Government. Will the devolved Administrations make similar contributions to the fund he has announced today? He says that the grant will be reviewed annually, but there might be concern that that is not as stable as some survivors would like. Will the Minister guarantee that the views, needs and concerns of survivors will be at the heart of those reviews, and will he explain why we need an annual review, and not a three-year review as under the previous Government?

Will the reviews look specifically at the increasing needs of thalidomide survivors as they get older? Evidence collected over the past two years confirms that their health and mobility is deteriorating rapidly now that they have reached their 50s. Because of those increasing needs, will the Minister commit today to ensuring that there will be no less funding in the years ahead?

I will conclude, as the Minister did, by thanking and paying tribute to the work of the Thalidomide Trust, its national advisory council, and all campaigners who have fought to make successive Governments face up to their responsibilities. Members across the House sincerely regret how badly thalidomide survivors were let down, and we will strive to ensure that that never happens again.

I appreciate the shadow Minister’s support for today’s announcement and she is right to say that people have waited far too long for an acknowledgment of the tragedy and for practical action. I acknowledge—as I did in my statement—the actions of the previous Government in initiating the pilot scheme, and the expression of regret made by the former Health Minister. One powerful thing about the scheme, as designed in the original pilot, is that it gives maximum power to the individual to determine and respond to their priorities and needs. That means that the money can be used in a host of different ways, as the hon. Lady described.

The hon. Lady raised a fair point about the devolved Administrations, and we must be equally concerned about thalidomiders in Scotland, Wales and Northern Ireland. The devolved Administrations did not feel able to commit to the 10-year period here and now, but they are fully committed to continuing that help and we will work closely with them to ensure that individuals in those Administrations are not left behind in any way.

The hon. Lady rightly mentioned the annual review, which is a question of proper accountability. The trust has done a brilliant job and I acknowledge its work. It is a completely responsible organisation that knows better than anyone how best to deploy the available resources, but as it acknowledges, it is right for it to be held to account for how public money is spent. There is no intention at all to question the purpose of the grant, and we want to give the certainty provided by the 10-year period. The fund will be index linked so that the value of money from the pilot scheme is maintained throughout that period. The review is simply to ensure that the scheme still makes sense and that we are using the available resource in the best possible way. I have every confidence that that will be the case and, as the hon. Lady requested, the needs of the thalidomiders who benefit from the money will be put at the heart of the reviews. We will not let those people down in the commitment that we are making today, and the funding will be maintained.

The hon. Lady rightly talked about deteriorating health because the body has been under such extraordinary strain. I spoke to thalidomiders earlier today. It is remarkable what their bodies have been able to do, often in the absence of limbs, but that puts an enormous strain them, and the wear and tear is now having its effect. We do not know what the prognosis is going forward. It is therefore right to take stock and see what their needs are after a 10-year period, but the commitment to those people must remain.

On 23 November, the first ever memorial to thalidomide victims was unveiled in Harrogate—a tree was planted and a plaque was unveiled to mark the 50th anniversary of the withdrawal of the drug. Thalidomide victims were present at the unveiling, which was carried out by Mr Guy Tweedy, a Harrogate resident and leading thalidomide campaigner.

The victims have waited a very long time for recognition, including financial recognition. I very much welcome the Minister’s comments, particularly those on the certainty required and the 10-year period, the challenges the victims face as they grow older and the sheer bravery that some have had to show during the course of their lives. I simply urge him to do all he can to support this special group.

I absolutely commit, on behalf of the Government, to do everything we can to support that group of people. As a society, we owe it to them to support them—they are often in very difficult circumstances. He is right to note the bravery that they have shown—not just the individuals, but their families too—in facing those circumstances.

I pay tribute to victims of the drug and to the trust that so admirably serves them, and thank the Minister for his statement, but how did he fix on that sum? Was it the sum that the trust asked for? Does it meet all the trust’s demands, or are other forces at work?

The right hon. Gentleman is right to pay tribute to the work of the trust over many years. We have based the sum on the amount of money provided as part of the pilot scheme, which appeared to work very well. It does not meet all needs, but many individuals get help in other ways—some have personal budgets, and so on. However, it is acknowledged that the amount is a massive help and support and gives them the reassurance for a lengthy period that continuing support will be available.

I join other right hon. and hon. Members in praising the dedicated, intelligent and sensitive leadership of the Thalidomide Trust over many years. The news from the Minister will be welcomed by thalidomide survivors throughout the UK, including in my constituency by a friend of mine and his wonderful family. The issue for many thalidomide survivors is the pursuit of an independent everyday life. Will the Minister advise me and the House why the decision was made to have a 10-year grant rather than a lifetime grant, which would have eliminated all uncertainty? I am very interested in the Minister’s comments on that.

We had a genuine judgment to make. On the one hand, I wanted to provide a good deal of certainty for a lengthy period, but this is a unique group of people. Their health is deteriorating, but we do not yet know what the prognosis is for the rest of their lives. It therefore might have been dangerous to allocate a sum of money for the rest of their lives. For all we know, their needs may grow considerably. It is therefore right to take stock in 10 years’ time and make a judgment on their needs at that stage.

I have met victims of thalidomide over many years, and I had the privilege of being Parliamentary Private Secretary to the former Member for North Warwickshire when he introduced the pilot scheme, so I really understand some of the difficulties that the Minister has faced. I therefore congratulate him, as I know that it was a difficult and emotional decision to take. The trust should also be congratulated on its efforts and tenacity over many years.

As I indicated in my statement, I had to respond to an Adjournment debate on the subject in Westminster Hall on my very first full day in the job. The presence of so many thalidomiders at that debate sent a very powerful message to me about the need for us to face up to our responsibility to support those individuals.

I very much welcome my hon. Friend’s statement, which will mean a huge amount to sufferers up and down the country, including those in my constituency. I wish to pay tribute to Ruth Daniels, one of my constituents, who has campaigned very hard on this issue.

The Minister mentioned that money would be made available for physical health needs. Can he confirm that it will also be made available for those suffering from mental effects as a result of thalidomide?

Ruth Daniels and many others have campaigned long and hard for justice, and it has taken too long for that to be properly acknowledged. I absolutely confirm that the money can be used for any health-related matter, and mental health can be affected as well as physical health, and is just as legitimate as any other health need.

The Minister will be aware that the trust has also called for the manufacturer finally to acknowledge its culpability, something that it has repeatedly failed to do. Will he update the House on his assessment of the likelihood of getting those cowards finally to take responsibility?

Talking earlier to people from the Thalidomide Trust, they are deeply frustrated—as am I—by the failure of the manufacturer to face up to its responsibilities. I cannot provide a positive update that suggests that it is about to do what it should do, but I think we would all agree that it should acknowledge its culpability without delay.

I thank the Minister for responding so positively—it was my Westminster Hall debate to which he responded on his first day in the job. I am glad that he has listened to the views of the thalidomiders. I also join in the tribute to the Thalidomide Trust, especially Mikey Argy and Liz Buckle, who first brought the information to me that persuaded me that a debate was needed.

The Minister mentioned the position in the devolved Administrations. Will he give the House an update on the discussions that he has had with the Cabinet Secretary for Health and Wellbeing in Scotland? Has he had any indication of when a statement or announcement will be made by the Scottish Government so that thalidomide victims in Scotland can have the same peace of mind as those in England?

I pay tribute to the hon. Lady for her campaigning on this issue, along with several other hon. Members, which has played a part in ensuring that the needs of thalidomiders are properly acknowledged. I cannot tell her that there will be a statement at any particular time, but I confirm that we are in touch with the Scottish Government and there is a desire to help. I will write to her to provide as much of an update as I can.