“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,” Staffordshire Moorlands Labour MP Charlotte Atkins said during a debate on thalidomide.
“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 a debate on the support provided for persons disabled by thalidomide.
“The thalidomide survivors are a unique group. They were disabled by the National Health Service. They are the survivors of a catastrophe that claimed the lives of many not so fortunate,” said Ms Atkins, a member of the Health Select Committee.
“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 Health Minister Mike 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. It 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 “Ëœnormalise’ 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’ 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 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?
“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-”Ëœ90s, 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,” Ms Atkins pleaded.
“I am not surprised that Charlotte Atkins has brought the matter before MPs, considering the campaigner she is. It was a pleasure to serve with her on the Select Committee on Health,” Shadow Health Minister Tory MP Mike Penning told MPs.
In replying to the debate, Health Minister Mike O’Brien said: “Let me begin by joining in the general congratulations to Charlotte Atkins on securing the debate on this enormously important issue.
“We need to clear the decks a little regarding what the issues are. 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 its position at some length, but I do not propose to do that, 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 Charlotte Atkins expressed and deal with them in detail. 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 will be addressed financially and with regard to provision.
“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 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.
“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.
“Charlotte Atkins 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.
“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.
“Charlotte Atkins 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.
“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.
“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.
“When the thalidomiders came to me, they said: “ËœWe 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 need to be able to put a scheme in place as soon as possible “” in the early months of next year “” and we need a clear way of discussing with the Thalidomide Trust how we will take it forward.
“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. MPs 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.
“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.”
Charlotte Atkins intervened to say: “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,” Mr O’Brien replied. “I hope that my officials can have constructive discussions with the NAC. I met its representatives on 16 July and 22 October and I hope to meet them again soon for further discussions.
“My officials plan to visit the trust later this week and I hope to have a further meeting with the NAC a week or so after that.
“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.
“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.
“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,” the Minister concluded.