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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."
Patrick Hall (Bedford) (Lab): 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.
Dr. Richard Taylor (Wyre Forest) (Ind): I congratulate the hon. Member for Staffordshire, Moorlands (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."
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."
Dr. John Pugh (Southport) (LD):
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?
Dr. Taylor: 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.
"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.
The hon. Member for Banbury (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."-[Official Report, 29 June 2009; Vol. 495, c. 93-94W.]
Mr. George Howarth (Knowsley, North and Sefton, East) (Lab): I will be brief, as I know that people are anxious to hear the Minister. I, too, congratulate my hon. Friend the Member for Staffordshire, Moorlands (Charlotte Atkins) on raising the issue, and on the thorough and lucid way in which she introduced the debate. Together with my hon. Friend the Member for Gower (Mr. Caton) and the hon. Member for Wyre Forest (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.
"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."
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.
Dr. John Pugh (Southport) (LD): I thank the hon. Member for Staffordshire, Moorlands (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 the right hon. Member for Knowsley, North and Sefton, East (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-the hon. Member for Wyre Forest (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.
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