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 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?
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.
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?
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.
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.
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 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 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.
It is a great pleasure to follow Tony Baldry, who has made some telling points. I congratulate my hon. Friend 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.
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.
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.
I commend to hon. Members a recent article by Bruce Page, one of the Sunday Times insight team that helped expose the thalidomide scandal. The article, "Thalidomide: Opening the Last Chinese Box", condemns the Government of the day, and Health Minister Enoch Powell in particular, for refusing to set up a public inquiry. I agree with Mr. Page that if an inquiry had been given the go-ahead and the whole truth had been revealed, we would not be calling for action at this late date. The Government's role would have been exposed and their obligations acknowledged and honoured.
The article also shines light on what happened all those years ago. It blows out of the water claims made at the time by thalidomide manufacturers and the Ministry of Health that the drug had been thoroughly tested-by the standards of the time-against every foreseeable dysfunction and that nobody had ever tested drugs for risks to human reproduction. Those claims are simply not true. Tests for reproductive risk were commonplace in the 1950s, notably for tranquilisers. There was a failure of regulation in the UK that the Government failed to address. There was no excuse for that failure, as my hon. Friend said.
Thalidomide was marketed in April 1958 and was approved by the Cohen committee in December 1958. That absurdly short time frame is evidence of the inadequacy of the assessment. In 1957, the World Health Organisation technical report series, No. 137, had warned that there were no regulations in Britain to ensure that drug manufacturers applied the best available technology when developing new products. That report was referred to the Health Standing Advisory Committee, but no action was taken. Bruce Page demonstrates that Distillers and Grünenthal did not apply the same level of scientific research as many of their competitors. The Government failed to make them do so, even after the WHO warning. The WHO paper drew attention to the failure of regulation in this country:
"Many countries required detailed data from the manufacturers of drugs before they were introduced to the market, one notable exception being Great Britain."
It was not the inadequacy of the science at the time that allowed thalidomide on to the market and into pregnant women's bodies, but the inadequacy of the Government's regulatory regime.
My hon. Friend is describing the catastrophic regulatory failure of the Government of the day. Does he agree that a further problem has been a culture at the heart of subsequent Governments not to acknowledge regulatory failure? Governments put up barriers to addressing the consequences of regulatory failure, such as setting precedent and incurring costs. Those arguments have been dragged out over the years, not just with regard to thalidomide, but in the Equitable Life case. Justice, fairness and responsibility get pushed to one side. Does he agree that although matters of precedent and cost must be considered, what is fair, right and just is more important?
My hon. Friend is right. I agree with the hon. Member for Banbury that precedent is not a great problem in this case. It is true that Governments do not like to admit culpability. Frankly, I do not care whether the Government admit culpability, but I care whether they accept their responsibility to do the right thing. Thalidomiders need the right thing to be done. There is the strongest possible case for the provision of Government financial assistance for thalidomide survivors.
I commend the Minister and the Department for engaging in dialogue with the national advisory council of the Thalidomide Trust about the best way forward over recent weeks. I understand that the thalidomiders' proposal for a financial plan, which involves an ex gratia payment administered by the Thalidomide Trust, has been met with a counter-proposal from the Department of Health for the inclusion of a group of thalidomiders in a pilot project for the roll-out of the personal health budget scheme. The Thalidomide Trust is not attracted to that approach for a number of reasons, some of which were listed by my hon. Friend the Member for Staffordshire, Moorlands. I will not repeat the arguments against the personal health budget approach, but I agree that it will not meet the challenges faced by thalidomiders. The Minister has seen the arguments from the Thalidomide Trust, so I will not repeat them, but I think that it is a strong case.
I hope that the Minister has read the comments of Professor Caroline Glendinning, who is a trustee of the Thalidomide Trust and a professor of social policy at York university. She has experience of evaluating social care and personal budgets, and will evaluate the pilot personal health budgets. One of her concerns is that the pilot of about 20 people proposed by the Department could create inequalities among the thalidomide population in England and between thalidomiders in England and those in the rest of the UK or overseas.
I believe that the financial plan put forward by the Thalidomide Trust advisory group offers the best way forward for a number of reasons. First, it is simple and straightforward as it just requires the Department of Health to pay an annual lump sum to the Thalidomide Trust, which would be calculated by costing the unmet needs of surviving thalidomiders. Those moneys would be distributed to the beneficiaries by the trust, according to its established points system that determines the degree of impairment. Secondly, the approach does not require pilot projects or a phasing-in over a number of years. It could be introduced quickly and would provide immediate assistance to all thalidomiders who need it. There needs to be a sense of urgency. Thalidomiders are experiencing extreme difficulties now-not next year or the year after.
Thirdly, there is no need to invent a new vehicle to deliver help to thalidomide survivors because one already exists. The Thalidomide Trust does a first-class job and has developed many ways to help thalidomiders in all aspects of their lives, as my hon. Friend said. That is done on the basis of the right to personal choice, which is the basis of the personal health budget approach. However, the trust looks for the best answer for the individual not just from one local health area, but from throughout the UK and sometimes beyond. The trust has a record of using the moneys from the manufacturers of thalidomide and the inheritor company responsibly and beneficially. It has the respect and trust of the surviving thalidomiders.
The best way forward is clear. We are not talking about a huge amount of public money, but we could make a big difference to the quality of life of a group of people who deserve it. We did the right thing by the people who received contaminated blood through no fault of their own. Let us now do the right thing by the people who were disabled by thalidomide through no fault of their own.
I congratulate Charlotte Atkins on securing this debate and on her excellent introduction. I will come at this issue from a different angle. Enough has been said about regulatory failure. I will discuss what we as a nation owe the thalidomiders.
My qualification is unique in this place because I qualified as a doctor in 1959. I worked as a houseman not far from here, and I remember thalidomide coming out under the name Distaval. Thalidomide was promoted to us as a sleeping pill. I was working in a medical ward and remember prescribing it as the first effective non-barbiturate sleeping pill. I do not think I would ever have given it to a pregnant lady, thank goodness, because I did not come across such patients in that job.
As a student, I received no teaching on the teratogenecity of drugs. We understood the effects of external agents such as irradiation from diagnostic X-rays, but not internal mechanisms. The Wikipedia entry on teratogenesis states:
"It was previously believed that the mammalian embryo developed in the impervious uterus of the mother, protected from all extrinsic factors. However, after the thalidomide disaster of the 1960s, it became apparent and more accepted that the developing embryo could be highly vulnerable to certain environmental agents that have negligible or non-toxic effects to adult individuals."
As students, we were not taught about such matters, and the general awareness was extremely low.
In order to demonstrate how much we owe to thalidomiders, I will go through a little medical history. The Medical Safety Act came into effect in 1968. However, until we got the "British National Formulary" in 1980, active help for practising doctors was found in an archaic little volume. I was still writing prescriptions in Latin in the 1960s and 1970s. I shall never forget marvellous drugs such as "Mistura ammonium et ipecacuanha compound", which was abbreviated to, "Mist. ammon. et ipecac. co.", and was an expectorant. We were expected to prescribe that until the 1980s, when the "British National Formulary" produced a new guide that told us which drugs were useful and which were not. At the back were lists of interactions, and drugs that should not be used in cases of liver disease, kidney disease and in pregnancy. That was in 1980, and was the first time that practising doctors had been given that sort of information.
I have compared the "British National Formulary" of 2004 with that of 2009. In 2004, there were 15 pages of advice on prescribing drugs during pregnancy. This year, there are 20 pages. The introduction to the section on pregnancy states:
"Drugs should be prescribed in pregnancy only if the expected benefit to the mother is thought to be greater than the risk to the fetus, and all drugs should be avoided if possible during the first trimester."
It is during the first trimester that the foetus is so vulnerable.
We are establishing a reasonable case to suggest that doctors in the 1950s were fairly ignorant of drugs such as those that we are talking about. There might be an excuse for doctors, but was there an excuse for the Department of Health and those advising it being equally ignorant?
I thank the hon. Gentleman for his intervention, but that point has already been made. I want to labour my point about the gratitude that we owe to thalidomiders. However, I agree about the failures of regulation.
Amazingly, thalidomide is coming back into use for some uncommon and rare conditions. Under thalidomide, the "British National Formulary" states:
"Teratogenic risk; effective contraception must be used for at least 1 month before, during and for at least 1 month after treatment...men should use condoms during treatment and for at least 1 week after stopping."
My point seeks to demonstrate that we have learned a vast amount since the thalidomide disaster, because of what happened to those people. We have heard the arguments about the failure of regulatory reform, and I am not sure that we will get much further on that.
Tony Baldry drew attention to the lack of precedent. In fact, there is a precedent. People who received contaminated blood were given that blood before it was recognised as a problem. This is the same sort of issue: thalidomide was prescribed before it was recognised as a problem. Therefore, I argue strongly that thalidomiders deserve an ex gratia payment-whatever it is called. Ex gratia means something given as a favour or not compelled by legal right. To me, however, remembering my dog Latin, ex gratia means that a payment should be given "out of gratitude" to those people. If affected blood recipients received such a payment, thalidomiders should also get one. The mechanism must be worked out, but those people have played an amazing part in teaching the nation, and the world, about the dangers of thalidomide, and they should be recompensed in some way.
"Prior to the thalidomide tragedy, there was no formal drug regulation system in place to monitor the safety of medicines in the UK. As a result of the tragedy, a complete review of the machinery for marketing, testing and regulating drugs was initiated, including enactment of the Medicines Act 1968, which introduced stricter testing for medicines prior to licensing to ensure that they meet acceptable standards of safety and efficacy."-[Hansard, 29 June 2009; Vol. 495, c. 93-94W.]
We owe that to the thalidomiders.
I will be brief, as I know that people are anxious to hear the Minister. I, too, congratulate my hon. Friend Charlotte Atkins on raising the issue, and on the thorough and lucid way in which she introduced the debate. Together with my hon. Friend Mr. Caton and Dr. Taylor, who has spoken with an expertise that probably does not exist anywhere else in the Chamber, she has argued forcibly, and any remaining doubts about the justice of the case have been removed.
Mikey Argy is the parliamentary campaign co-ordinator of the thalidomide campaign, and I will quote from an e-mail that she sent me, as it sums up the position well:
"It is our belief that the UK government shares responsibility for the thalidomide disaster...Had the thalidomide children not been born half a century ago, they would have benefitted from modern government compensation schemes along the lines of those to assist people affected by contaminated blood products (HIV and CjD) and the Coal Health Compensation Scheme. In order to give thalidomiders the resources they will need to live out the rest of their lives independently...we intend to build up a groundswell of support among British MPs."
They can certainly count on me as part of that groundswell.
My second point is about whether there should be a pilot scheme. I understand the reasons for pilot schemes, and in most circumstances they are a good way of testing a new system before it is rolled out. However, this is a different kind of problem. The Thalidomide Trust has huge experience in dealing with the diversity of problems that have been described by my hon. Friends. It knows how to do it; no piloting is required for the trust to run a scheme that will benefit all those people and deal with the diversity of problems experienced.
If I could proffer some advice to the Minister-something I rarely do-it would be that it is important to recognise that expertise already exists, and that perhaps it would not be appropriate to conduct a pilot project. With good will on the part of the Government and those involved in the campaign, a system could be devised to meet everybody's needs.
Although a great deal of progress has already been made on this matter, in every generation, a handful of injustices have to be resolved. This case is one such injustice that has not been satisfactorily resolved. I know that my right hon. and learned Friend is decent and, along with hon. Members from all parties, I stand ready to assist him in any way possible to bring the matter to a fair and just conclusion, and I am sure that is his intention-I just want him to recognise that there is a great deal of support for his doing so from Labour Members.
I thank Charlotte Atkins for precipitating the debate and introducing it in such an informed and balanced way. I shall begin with a resumé of what I believe has been established and what I think we all agree on.
There is little doubt that thalidomide is a profoundly disabling condition. It is diverse in its outcome and extent-a point made by Mr. Howarth-and in the level of handicap. The condition affects not only individuals, but their families. In saying that, I pay tribute to the thalidomiders I have known, who have not only lived with that diversity, but striven to conquer their disabilities. In many cases, those thalidomiders have, with immense cheerfulness and optimism, become major contributors to our world, our lives and their communities. They may be disabled citizens, but they are by no means despairing citizens.
The point has been well made that as thalidomiders age, there is little doubt that the handicaps they endure and have to work around create special problems-serious organic and muscular problems, a severely impaired personal and social life and problems we probably have not yet heard about because we simply do not know what will happen. All those problems demand appreciable resources to fend them off. It is widely acknowledged that there is little doubt that thalidomiders' disabilities and disadvantages were entirely avoidable. There was a massive failure of the duty to care by Grünenthal and Distillers, and a failure of the regulatory system. That is not a matter of debate-it was wrong of the producer to market such a drug and negligent of the state to allow its distribution.
When we consider the sad history of the matter, there is little doubt that the parties to this disaster have usually had to be dragged kicking and screaming to acknowledge their responsibilities. Trailblazing investigative journalism has clearly played its part, but so has smart legal footwork, which was needed to unmask the cause, genesis and liabilities of the tragedy. At one stage, Distillers-not unassisted by the Department of Health-sought to deny the possibility of any foreknowledge or likelihood of thalidomide's injurious effects. In addition-this is a sad point to make-Distillers sought to take advantage of the legal inexperience of thalidomide sufferers by pressuring them for an early and derisory settlement. More culpably, in the early days, through contempt of court rules, Distillers sought to suppress publication of the facts.
There is also little doubt about the embarrassment and complicity of the British state-I mean that in the widest sense and not in reference to any particular Government-and that it has often had too cosy a relationship with the pharmaceutical industry. Although I accept-Dr. Taylor made this point-that doctors had reason in those days not to be particularly knowledgeable about thalidomide, the Department of Health knew the limitations of the drug trials that had taken place-that they had used small animals and had ignored things such as the effect of the drug through the placenta. The Department of Health knew what the characteristic biochemistry and behaviour of thalidomide's ingredients were and what the World Health Organisation was advising. Tellingly, because of the facts, it also knew that the drug was prevented from sale in the USA on safety grounds under legislation passed in 1938-as with Equitable Life there was a producer and a regulatory failure.
There is little doubt that that general analysis is accepted worldwide. In every other nation where compensation is given-even if that compensation is less than that given in the UK, and in some cases it is-the state contributes. The UK Government have, in reality, done very little in a financial sense to resolve the problem and, until recently, they have collected far more in tax than they have given out in lump-sum benefits.
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 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.
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 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. 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. I pay tribute to the ferocious tenacity of the thalidomiders. As we heard from 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.
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.
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 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.
Let me begin by joining in the general congratulations to my hon. Friend Charlotte Atkins on securing the debate on this enormously important issue. We have heard several passionate contributions to the debate-from my hon. Friend Mr. Caton, my right hon. Friend Mr. Howarth and my hon. Friend Patrick Hall, as well as from 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 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 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.
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, and a range of other things. We must find out how we can best address all those needs.
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.
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.
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.
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 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.
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 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-
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.
What the hon. Gentleman proposes is an excuse for not committing to anything now. Fairly soon, I want to reach an agreement to commit to something. I want to do that now, or in the coming months, not over a longer period. I do not want to leave things vague. [Interruption.] I do not want to have a party political row with the hon. Gentleman. I want to get on and find a way to resolve the matter. Hon. Members have rightly said that the issue has dragged on for too long, and I agree with that. I want to find a way to deal with it.
If my hon. Friend will forgive me, I want to deal with the questions that have been put to me.
The next question was about how circumstances can change for individuals, and whether we would look at changing circumstances as part of the project. The answer is yes, we will. The amount of funding would have to be agreed over a period of several years, and then, as circumstances changed, it would have to change. As individuals develop different health-care needs, the amount of funding would have to address that.
I want to make a point about the so-called independent review. The Thalidomide Trust has been independently reviewing the issue for 40 years, and it is the organisation that has all the knowledge. There is no need for an independent review. The trust has the information, it has its finger on the pulse and it knows exactly what the needs of its beneficiaries are.
Which is why we need to access the Thalidomide Trust's knowledge. I hope that my officials can have constructive discussions with the NAC. I met its representatives on
The NAC has been clear with me: it wants ex-gratia payments. It has set out its case with force and eloquence. I had the pleasure of meeting a range of thalidomiders just before this debate, and, as I said, I have met with the NAC; they make their points forcefully and persuasively. That is why I am anxious not to get into the traditional arguments. I could have set out the Government's traditional position, but I want to see whether there are ways to resolve the issue. We need to talk to each other in an honest and straightforward way. I have a view about how we might be able to deal with the matter, and am happy to say that it might work. I hope that it will, but it might not, in which case, if the trust has clear arguments against the proposal, we may have to go back to the drawing board and look at the matter again.
The trust has put forward proposals, but I have concerns about them. For example, if funding is to be directed through the trust, how will we get verification of how it is spent? By and large, we are happy that the trust is a good organisation, and we want to work with it. There is constructive dialogue between it and the Government, but I do not want to drag it out, which is why I said a few weeks ago that I wanted a meeting fairly quickly. I do not know whether we will get a deal before Christmas, but the NAC said that it would like to reach an agreement by then. I do not know whether that is possible, but I would like to do that, if we can.
On a similar point, under the Minister's scheme, if a PCT in the pilot has thalidomide victims who need to be funded via direct payments, the funding presumably will come from additional resources given by the Government for running the pilot, not from existing PCT resources which, as we all know, are stretched right across the country. Presumably the funding will not come from the existing overall PCT budget.
Yes. Individual budgets will come from PCT budgets, but additional assistance for the Thalidomide Trust to administer the system will not. It is clear that direct payments come from existing budgets in any event.
The question for me is how we ensure that the increased health-care needs of thalidomiders are met. I accept that they need to be met. How are we to do it, and how do we ensure that power remains with individual thalidomiders? If the funding goes to them, they should have some choice about how it is directed, and if they want to direct it through the Thalidomide Trust, we should discuss with the trust how that can best be done.