Westminster Hall
Wednesday 4 November 2009
[John Cummings in the Chair]
Thalidomide
Motion made, and Question proposed, That the sitting be now adjourned.-(Mike O'Brien.)
9.30 am
Charlotte Atkins (Staffordshire, Moorlands) (Lab): As a child, I used to visit the local Dr. Barnardo's home with my parents. That is where I first came across thalidomide: the home was looking after a baby with no arms or legs. That image has stayed with me for more than 40 years. I am proud to follow in the footsteps of the fantastic disability campaigner, Jack Ashley-his old constituency of Stoke-on-Trent, South, adjoins mine-by initiating an Adjournment debate on the support provided for persons disabled by thalidomide.
The thalidomide survivors are a unique group. I am pleased that many of them are here today. They were disabled by the national health service. They are the survivors of a catastrophe that claimed the lives of many not so fortunate. However, the fortune of the thalidomiders is a bitter pill; they are now in their 40s and 50s, their deformities are causing increasing pain and they are having difficulties with advancing age. Many thalidomiders have never been able to work. Those who have been able to work have, over the last few years, started to retire early. That is because they have had to use their limbs in ways for which they were not designed. Many victims have needed hip replacements and even shoulder replacements.
A medical survey by the Thalidomide Trust revealed that, on average, each thalidomider had more than six complex and chronic health conditions-for example, ear, nose and throat problems, poor vision and palsy; they also had internal problems with the kidneys and the heart, and gastro-intestinal troubles. They also have arthritis, osteoporosis, sciatica and problems such as epilepsy and obesity. The result is that thalidomiders are living in bodies 25 years older than their age.
Why is this a problem for the Government? It is simply because the Department of Health is implicated in the tragedy. The World Health Organisation warned the Government in 1957 that unless safety measures were tightened before new drugs received permission to be sold in the United Kingdom, disaster was increasingly likely. Before a drug could enter the UK, the Cohen committee, a Government agency, had to scrutinise the medicine's effectiveness. In 1962, in an oral answer to a parliamentary question asked by Maurice Edelman, the then Minister of Health, Enoch Powell, said that the remit of the Cohen committee was to decide whether a drug had been tested satisfactorily.
Thalidomide was described by the Cohen committee as a drug of proven value, and it was granted purchase tax exemption in December 1958. That was a highly sought prize, as it encouraged the NHS to use the drug as a prescription medicine, widely used for morning sickness. Distillers made the remarkable claim that
thalidomide was completely safe for pregnant women. The Cohen committee never asked the company to prove that statement, despite the fact that all major pharmaceutical companies regularly tested new drugs on pregnant rats and rabbits.
In America, Frances Kelsey, an official in the US Food and Drug Administration, picked up warning signs of the dangers that thalidomide posed to the foetus from the August 1960 edition of the British Medical Journal. It warned of the damage that the drug caused to nerve endings. As a result, thalidomide did not receive a licence in the USA. Members of the Cohen committee should have been aware that thalidomide could pose a risk to the foetus.
Rather than engage in the blame game, I believe that it is important to look to the future. The Thalidomide Trust is grateful for the constructive engagement that it has had with the Minister of State, Department of Health, my right hon. and learned Friend the Member for North Warwickshire (Mr. O'Brien). The trust is also grateful that the Department of Health has sought to work with it. However, the 463 thalidomide survivors have complex needs, which are constantly evolving and unpredictable. Their case is unique and unprecedented in medical history. The Government's response therefore needs to be innovative. They must recognise the pioneering work done by the trust, which, against all the odds, has found life-enhancing solutions for its members.
As children, thalidomiders were experimented on, and were strapped into cumbersome prosthetic arms and legs, in order to "normalise" them. Hopefully, we now live in more enlightened times. When we engage with thalidomiders, we should look at ways to meet their real and changing needs, rather than fit them into an established care framework that is ill-equipped to respond quickly and flexibly to everyday challenges.
The Thalidomide Trust has developed a health support service for thalidomiders. It was made necessary by the NHS's failure to provide relevant and adequate health care. The trust has developed peer-to-peer volunteer support networks. It has experience in dealing with the full range of health and social problems, and it is better equipped than statutory bodies to meet the complex needs of its beneficiaries. It also has its own mechanism for reclassifying an individual's degree of disability. It is called the individual beneficiary review. It is highly complex, and was developed in conjunction with the Leeds university school of medicine. However, the trust has the capacity to conduct only 10 to 20 such reviews a year.
I am pleased that the Department of Health has taken on board the real challenges presented by the thalidomide survivors, and the requirement to base support on the needs of each individual in a way that puts people in control of their own care. However, there are concerns about the Department's proposal to develop personal budgets for thalidomide survivors and to set up a pilot study. It would help if the Minister clarified a number of points.
How will the personal health budgets be calculated? Many thalidomiders receive no health-care support, so it is not possible to base such budgets on existing spending. How can the personal health budget team make commitments about the level of funding available from local authorities for thalidomide survivors? Given the dispersed location of thalidomiders, how can one
primary care trust and one partner local authority lead a pilot study with 20 survivors? In reality, more PCTs and local authorities will need to be involved, increasing the liaison and management costs for the Thalidomide Trust. Who will ensure that there are appropriate health services locally for thalidomide personal health budget holders to spend their money on?
The Minister of State, Department of Health (Mr. Mike O'Brien): I did not catch the previous question, and I want to be sure that I can respond. Will my hon. Friend repeat it? I heard her question about the care costs of the trust; I mean the one after that.
Charlotte Atkins: The issue was the dispersed location of thalidomiders. The Department suggested that the trust should deal with one primary care trust and one local authority. However, the trust and thalidomiders say that because they are so dispersed, they would need more than one PCT and more than one local authority, which would put quite a burden on the Thalidomide Trust. How can we ensure that appropriate health services are available locally for thalidomide personal budget holders? Given that the Thalidomide Trust set up its own health link because of the difficulties in obtaining appropriate local health services, how can we ensure that thalidomide survivors are not short-changed?
David Taylor (North-West Leicestershire) (Lab/Co-op): My hon. Friend makes a cogent case. Does she intend to look particularly at the issues affecting thalidomiders as they move into their 40s and 50s, which she has mentioned? Their movements become more restricted; mobility therefore becomes more of an issue, and the costs of mobility mount. How will that be catered for within the personal budgets? I am not sure that it is, so that is something that we need to address.
Charlotte Atkins: My hon. Friend is absolutely right. A powered wheelchair can cost something like £18,000, and adapting a car can cost a staggering £60,000. Obviously the car has to be new. The whole cost is something like £60,000, and that is just for a fairly basic car that is large enough to accommodate everything that a thalidomider might need. What will happen if the pilot programme is terminated in 2012, and how will the Department of Health ensure that the pilot programme does not create inequalities within the thalidomide population?
Thalidomiders have had to fight every step of the way for justice. In 1973, after a decade of legal wrangling and with the help of The Sunday Times editor Sir Harold Evans, they secured from Distillers-the company that distributed the drug in the UK-£20 million, which was paid into a trust for the future care of survivors. In the mid-90s, that sum was topped up, as the fund was predicted to run out in 2009. In 2005, an improved deal was signed with Diageo. However, even after all those rises, the average pay-out to thalidomiders is just £18,000 a year. That is barely enough to pay for an electric wheelchair, which will last just two years. It will go nowhere near paying for adapting a car, or for comprehensive adaptations at home to allow some dignity and independence, such as a walk-in shower, a stair lift or a computer with voice activation. Poor investment
returns, inflation and the medical and social care burdens of survivors have sharply eroded the value of the original settlement.
Other Governments, such as those in Germany, Italy and Ireland, have agreed payments to thalidomiders. I urge the UK Government to do the same, as many survivors are now in dire need. Justice is not time-limited. These totally innocent victims must have Government help now. The most cost-effective way of ensuring that is for the Department of Health to make an annual ex-gratia payment to the Thalidomide Trust, which has a proven record of acting on behalf of all its beneficiaries. That should be overseen by a steering group, involving the Department of Health, the Department for Work and Pensions, the Treasury, survivors, staff and the Thalidomide Trust's trustees. Please help the thalidomide survivors to live out the last third of their lives with dignity, independence and security.
9.43 am
Tony Baldry (Banbury) (Con): The Minister today could take the line that these matters were resolved in the 1970s when a settlement was agreed between Distillers and those who had suffered as a consequence of thalidomide. In the 1970s, it was much more difficult to bring proceedings against a Government Department because of the complexities of Crown immunity. However, the law relating to Crown immunity has dramatically changed in the intervening years.
None of us was present during the negotiations between the representatives of those who had suffered as a consequence of thalidomide and Distillers, and none of us was present with their lawyers. As the Minister is a lawyer he will know that in considering what should be an appropriate quantum of damages, some considerable thought must have been given at the time to the likely life expectancy of those who had suffered from thalidomide. If one looks back at the legal textbooks, one can see that at that time, life expectancy for people suffering from similar conditions was comparatively short. People may have lived into their teens. However, those who were disabled by thalidomide have confounded everyone by living full and often dynamic lives in unbelievably difficult circumstances. I suspect that their life expectancy-and how long they have lived-has substantially confounded the estimates of the lawyers in the 1970s. That has had a double hit. First, even when topped up, the £20 million put into the original trust fund has been wholly inadequate for the needs. Secondly, as those who are disabled by thalidomide grow older, so their needs get greater and the costs of caring for them grow incrementally.
I can think of no other group like this one. So, if Ministers do something, they will not be accused of creating a precedent. They will not have people knocking on their door, saying, "You created a precedent with those disabled by thalidomide so you should be doing similar for us." This is a group of some 463 people. It is a finite group of people, all of whom are growing elderly with clear and increasing medical needs. I see no reason why the Government should not respond to those needs in the way in which the hon. Member for Staffordshire, Moorlands (Charlotte Atkins) suggested. They could make a pragmatic ex gratia payment year on year to the Thalidomide Trust. The trust has demonstrated its ability to well manage the funds that it receives from Distillers, and subsequently Diageo. It recognises that those who are disabled by thalidomide
have different needs that require different levels of support. Therefore, it is much more responsive than perhaps statutory structures that might exist elsewhere. That is a solution that meets the justice of the cause. The test of all of this is that as a society, it would be very unjust to leave those who, through no fault of their own find themselves in their older years struggling with their increasingly difficult life-particularly as they are a group of people who have shown unbelievable courage in taking on life and living life to the full notwithstanding their disabilities from the day that they were born.
I hope that the Minister and my hon. Friend the Member for Hemel Hempstead (Mike Penning) will take the opportunity of this debate to not just give the rather inflexible line of, "These are all matters that were resolved in the 1970s, and we have no intention of revisiting them again"-that would be tragic and wholly unjust-but go away to review the case and work out what sort of sum would be reasonable to pay, year on year, ex gratia, to this group of people, who are experiencing very real medical needs. That seems to be a perfectly proper use of part of the Department of Health's budget. There is a proven mechanism through the Thalidomide Trust that could meet the equity and justice needs of that particular group of people. It is not a group that will expand; it is by definition a finite group of people clearly identifiable as potential beneficiaries of the trust. Justice must be met, and the House collectively has a duty to ensure that it is.
9.50 am
Mr. Martin Caton (Gower) (Lab): It is a great pleasure to follow the hon. Member for Banbury (Tony Baldry), who has made some telling points. I congratulate my hon. Friend the Member for Staffordshire, Moorlands (Charlotte Atkins) on securing this vital debate and on making an excellent case in support of the campaign by thalidomide survivors to secure financial assistance from Government. I am the chair of the all-party group on thalidomide, which is working with the national advisory council of the Thalidomide Trust to achieve those objectives.
Thalidomide was developed by the German firm Chemie Grünenthal as an anticonvulsant. It did not work for that purpose, but trials showed that it had sedative properties, with the apparent added benefit that overdoses resulted not in death but simply in prolonged sleep. It was first marketed in Germany in 1957 and in the UK in 1958. It was sometimes combined with other drugs to treat a variety of conditions.
The promotion of all those products laid great stress on the safety of thalidomide. Grünenthal also claimed that thalidomide was completely safe for pregnant women and could therefore be used to treat morning sickness and some other negative aspects of early pregnancy. Astonishingly, the company made that claim without testing the drug on pregnant animals or testing the science behind the claim that an overdose would not normally kill. The latter claim resulted from the fact that thalidomide, although highly toxic, had a low absorption rate. That, however, could be affected by other illnesses, the taking of other medicines and, crucially, pregnancy.
Distillers, which manufactured thalidomide in the UK under licence, had to conduct its own tests, albeit limited ones, on the drug, and it commissioned researchers
at Glasgow university to consider the effect of thalidomide on the body's hormone balance. The results, published in the British Medical Journal, showed a marked reduction in activity of the thyroid gland, which should have set alarm bells ringing. It was known at the time that any drug that affected the thyroid was likely to be able to pass through the placenta, yet Distillers, like Grünenthal, did not test the drug on pregnant animals.
Even more disturbing is the fact that the Cohen committee, the body appointed by the Government to establish whether new drugs had been properly tested, failed to ask whether tests had been made on pregnant animals. Instead, as my hon. Friend said, it described thalidomide as a drug of proven value. As a result, thalidomide was exempted from purchase tax and put on the NHS prescription list.
I will return to UK regulation in a little while, but my hon. Friend was right to point out the contrast with how the Food and Drug Administration in America dealt with Richardson Merrell's application to market the drug there. As she said, Dr. Frances Kelsey recognised that a variety of factors could affect absorption rate and required tests to be made on pregnant animals. Tests were carried out on pregnant rabbits, and deformed foetuses were born. If the Cohen committee, acting on behalf of the Government, had required similar tests to be done here, it would have seen in baby rabbits similar deformities of the sort that were later to be seen in human babies. It did not. Some 3,800 babies died, and 508 were born with disabilities to mothers who had taken thalidomide, having been assured that it was perfectly safe to do so.
When we think of people affected by thalidomide, most of us think of people with rudimentary arms or legs, but the drug caused a far greater range of debilitating conditions. Many suffered damaged ears and hearing. In others, eyesight was affected. A few suffered brain damage, with associated sensory limitations. Some with legs have no arms, and a large number have arms ranging from half or two thirds of normal length to two or three inches. Many with hands have fingers missing and no thumbs. Leg damage often resulted in one or both legs being short and feet absent or significantly damaged. In addition, there could be extensive damage to the internal organs and the skeletal structure.
Before the establishment of the Thalidomide Trust, which was later to protect the interests of those children, they were subject to well-meaning but extremely questionable and certainly unwelcome professional attention, as my hon. Friend mentioned. Some endured a series of operations intended to make them look "more normal", such as constructing ears where they had none or removing vestigial digits. There was a drive to find functional artificial arms, but childhood experience of such prosthetics put the majority of thalidomiders off them in adult life.
What is truly remarkable is how the individuals affected by thalidomide have responded to the disadvantages dealt to them. In their teens, many refused to accept the limited lifestyle that some thought appropriate for people so badly disabled and determined to live as fulfilling a life as possible. Sadly, 46 of the original 508 have died, but a large proportion of the survivors have taken life by the horns. A majority are married, and between them they have more than 500 children. Many have
become highly qualified and have successful professional careers; others run their own businesses. A large number have regular full-time jobs, and half are in some form of paid employment. Many of those not in paid jobs are bringing up families.
However, their very determination to get on with things has taken its toll. By the late 1990s, it was becoming clear that thalidomiders were facing a new set of health problems brought about by their wholly admirable commitment to activity. They are entering their 40s and 50s, but have always had to use their limbs and other parts of their bodies in ways for which they were not designed. Many have needed hip or even shoulder replacements at the age of about 40. Others have reluctantly been forced to give up work or are considering doing so, which creates personal financial difficulties.
The main reason why I believe that we should call for Government assistance to help thalidomiders at this time is that they badly need it and no one else can or will provide it. Some things for which they need additional resources have been mentioned, as well as the basics-additional care hours, help with cleaning and gardening and so on-but there are also technical changes, which my hon. Friend mentioned.
Mr. Roger Williams (Brecon and Radnorshire) (LD): The hon. Gentleman is making a powerful case, as have other hon. Members. It seems to me that if a similar incident occurred today, the sums of money awarded would be far in excess of those awarded by Distillers and Diageo, because we have greater expectations of what kind of life people with disabilities can and should lead and of the cost of achieving that. What was awarded is completely inadequate for today's realistic expectations.
Mr. Caton: The hon. Gentleman is absolutely right. I do not want to go into the history of the case against Distillers, but the parents were worn down at the time by Distillers' resistance to paying anything like decent compensation. If they had not been and the case had gone through properly, they probably would have received a much more substantial payout than they did, even with the Sunday Times campaign. He is absolutely right.
Thalidomiders need technical adaptations. Due to the various conditions from which they suffer, they need control adaptations for their homes and cars. As my hon. Friend said, that is very expensive in some cases. They need specialised wheelchairs, and we have been told how expensive those can be. The good news is that there are answers to many thalidomiders' needs, largely as a result of technological developments. The bad news is that they are often expensive and beyond the reach of most survivors.
The second reason why Government should step in to provide the necessary financial assistances comes from the history of the period in the 1950s just before and when thalidomide was put on the market. As my hon. Friend emphasised, it was the failings of the Governments of the day, here and elsewhere, that contributed to people being born with disabilities. That must be acknowledged.
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