ICTA LOGO
INTERNATIONAL CONTERGAN THALIDOMIDE ALLIANCE
 
CAMPAIGN INFORMATION
Campaign information

January 2013 All UK governments agree to extend the health grant for 10 years

15.11.2012 Scottish news – Meeting with Alex Neil, the Cabinet Secretary for Health and Wellbeing and the Thalidomide Trust Click here to read more

6.11.2012 English News - Meeting with Norman Lamb the Minister of State for Care Services and the Thalidomide Trust Click here to read more

2012 The UK Thalidomiders campaign to extend the health grant Early Day Motion 46

01 April 2010 – the National Advisory Council (NAC) of the Thalidomide Trust has welcomed receipt of £20m from the Department of Health in England. The money is a three year grant from the DH designed to meet the increasing health needs of those damaged by the drug thalidomide.

The grant was announced in December 2009 and confirmed by health minister Mike O’Brien in the House of Commons on January 14 this year.

Mr O’Brien said: “In addition to the £20m from the Department of Health in England, the devolved administrations in Scotland, Wales and Northern Ireland have agreed three year grants of £3.4m, £1.9m and £1.1m respectively."

“This funding will vastly improve the quality of life of the UK’s 466 remaining thalidomide survivors,” said Nick Dobrik, the NAC member who has led the campaign to improve support for thalidomiders.

“Many of us are having to retire early as a result of deteriorating health and the cost of specialist equipment like motorised wheelchairs, adapted vehicles and specially designed kitchens is astronomically high.”

The National Advisory Council is confident that politicians at Westminster and in the devolved assemblies in Edinburgh, Cardiff and Belfast will put the funding on a permanent basis, for the lifetime of thalidomide survivors.

“The support we have received from politicians of all parties has been phenomenal,” said NAC deputy chairman, Guy Tweedy.

“From our discussions with MPs and members of the devolved assemblies, we have every reason to believe that they see our needs as permanent and increasing and will provide us with the support that we need for as long as we need it”

The Thalidomide Trust intends to start distributing the funds to its beneficiaries within the next two months.

 

February 2010

Welsh victims of the thalidomide scandal are to be given money to help improve their care as part of £1.9m of funding from the assembly government.

The cash will be distributed among the 31 known Welsh survivors to minimise any deterioration in their health.

It will be in addition to the £20m UK government compensation package given to the Thalidomide Trust to help survivors around Britain last month.

Babies were born with limb deformities after their mothers took the drug.

Pregnant women were prescribed it in the 1950s and 1960s as a treatment for morning sickness or insomnia.

It was withdrawn from sale in 1961 after babies were born with severe physical disabilities.

The assembly government funding, which will be available from April, will be given to the Thalidomide Trust to distribute to thalidomiders - as survivors call themselves - to improve their care and support.

While survivors in Wales will have access to a share of the funding announced by the Department of Health, I wanted to provide additional funding

First Minister Carwyn Jones
In January, the UK government expressed its "sincere regret" and "deep sympathy" to 400 UK victims of the thalidomide scandal ahead of unveiling its £20m compensation package.

First Minister Carwyn Jones, who was making the funding announcement while meeting thalidomide survivors in Gorseinon, Swansea, said: "I believe that addressing the ongoing needs of thalidomiders rests with the UK government as it authorised the use of thalidomide.

"While survivors in Wales will have access to a share of the funding announced by the Department of Health, I wanted to provide additional funding to ensure that people affected by thalidomide in Wales receive the care and support they need.

"I am pleased that the UK government has expressed its sincere regret and deep sympathy for the injury and suffering endured by all those affected when expectant mothers took the drug between 1958 and 1961.

"The funding I am announcing today will help thalidomiders manage the continuing and increasing health needs as they get older.

"We will be working with the Thalidomide Trust on how this funding will be distributed to maximise the benefits for individuals."

Nick Dobrik, representative of the National Advisory Group for the Thalidomide Trust and leading campaigner, said: "On behalf of the thalidomide community, we would like to thank the Welsh Assembly Government for its speed and generosity in contributing to helping thalidomiders maintain their independence."

Health Minister announces £1.1m compensation for thalidomide survivors.

The Health Minister has said that he will compensate the 18 thalidomide survivors from Northern Ireland.

This follows an announcement by Mike O’Brien, the Minister of State for Health Services that compensation is being made available for thalidomide survivors in England.

Michael McGimpsey said: “I fully support the principle of meeting the health needs for any patient who has suffered ill health through using medicines which, unknown to them, carried unacceptable safety risks.

“I can therefore confirm that £1.1m required to meet the health needs of sufferers born in Northern Ireland will be made available to the Thalidomide Trust. My officials will undertake discussions with the Trust to agree how a personalised way of meeting these needs can be best achieved.

“I am sincerely sorry for the injury and suffering endured by those affected when expectant mothers took the thalidomide drug between 1958 and 1961.

“In the light of what happened, a thorough review was carried out and as a result the Medicines Control Agency (MCA), now the Medicines and Healthcare products Regulatory Agency (MHRA), was created by the UK Medicines Act 1968.”

Official Report 21 January 2010
Scottish Parliament
Thursday 21 January 2010

The Presiding Officer: We will take a supplementary question from Jackie Baillie.

Jackie Baillie (Dumbarton) (Lab): The First Minister will be aware of the new £20 million package that has been announced by the UK Government to assist thalidomide survivors in England, which was followed swiftly by an announcement that the Northern Ireland Assembly would make a contribution. However, the Cabinet Secretary for Health and Wellbeing has yet to respond.

I know from a constituent the physical hardship and severe challenges that thalidomide survivors face on a daily basis and the need for housing adaptations, wheelchairs and other services—needs that are currently not being met. Given that the First Minister signed an early-day motion in Westminster in November to support financial assistance for thalidomide survivors, will he today commit his Government in Scotland to doing just that?

The First Minister: Although, as we are all aware, this tragic episode occurred well before the establishment of the Scottish Parliament, we all wish to express our sympathy for the suffering that has been experienced by the affected children and their families and friends. I am delighted that the UK Government has agreed to provide funding of £20 million to the Thalidomide Trust for investment, adaptations and other interventions. I am happy to announce that the Scottish Government has agreed to make proportionate funding available to contribute to that package of assistance. We will take forward discussions with the Thalidomide Trust to discuss the best way in which to allocate those additional funds. I hope that that is welcomed by the entire chamber.
Statement from the NAC Campaign Group

19.12.2009

We are very pleased to announce that we have concluded an agreement with the Government to provide extra funds for the Thalidomide Trust. The Department of Health has agreed to make a three year grant of £20m to help to meet the health needs of thalidomiders. The trustees will be free to apply these funds as they see fit. The whole grant will be paid in one lump sum and the total is likely to be increased by contributions from the devolved administrations in Wales, Scotland and Northern Ireland.

We have received support from all parties in the House of Commons and we fully expect to be able to secure funding on a more long-term basis after 2012 for the rest of the lifetime of the thalidomiders.

Within the next few days we also expect the Government to make an apology for the thalidomide disaster.

We are extremely grateful for the support of British thalidomiders, our trustees and the Trust’s staff in achieving what we were initially advised was ‘the impossible’. It could not have been done which such amazing rapidity without the backing of so many MPs and peers, many of whom put aside party loyalties to fight on our behalf. Particular thanks must go to the Health Minister, Mike O’Brien who is the architect of the agreement. Lords Ashley and Morris were also highly persuasive in convincing their fellow politicians to support us.

Outside Parliament we were greatly encouraged by the enthusiasm with which the former Sunday Times editor, Sir Harold (Harry) Evans, took up our cause.

Lastly, our legal adviser, Jacqueline Perry QC, has provided invaluable guidance, especially in the closing stages of our negotiations.

We would like to wish everyone a very happy Christmas.

Nick Dobrik
Guy Tweedy
Geoff Adams-Spink
Mikey Argy

update 15th December 2009 by the campaign team

UK Parliament update

Early Day Motion by Martin Caton 11/02/2009

Click here to see the list of MPs' signatures

EDM: THALIDOMIDE AND FINANCIAL ASSISTANCE (No. 2)779 Caton, Martin

That this House recalls that side effects of the drug Thalidomide, prescribed for prevention of morning sickness in the 1960s and 1970s, caused nearly 500 babies to be born with a range of severe disabilities; pays tribute to the campaign by journalists, politicians and others that eventually resulted in the manufacturers having to increase their compensation offer tenfold; nevertheless recognises, however, that this could not take account of unforeseen future problems arising from Thalidomide; notes that, as the surviving victims enter their 40s and 50s, many of them face a host of new problems as their bodies suffer from the wear and tear that the overuse of certain muscles has caused, dramatically restricting movement and pushing the cost of mobility up; believes that these people should now receive direct help from the state; and calls on the Government to introduce a financial assistance package to improve the lives of Thalidomide victims.

Asked By Lord Ashley of Stoke 10/03/2009

To ask Her Majesty’s Government whether they will set up a state compensation scheme for victims of thalidomide.

The Parliamentary Under-Secretary of State, Department of Health (Lord Darzi of Denham): My Lords, thalidomide victims are compensated through a private settlement which was agreed with Distillers, now part of Diageo plc, the company that marketed the drug in the United Kingdom, and the Thalidomide Trust, which was established to administer the annual payments to victims. Diageo continues to make annual payments to the trust, and I understand that under the most recent settlement Diageo has agreed to pay a total of £150 million into the trust fund by 2037.

Lord Ashley of Stoke: My Lords, I thank my noble friend for that response, but is he aware that it is very disappointing? The settlement with Distillers to which he referred was regarded at the time as an accomplishment and was warmly welcomed, but with the aging process and increasing costs, it is now regarded as a very poor settlement indeed. We require the Government to step in and set up a compensation scheme because they are responsible for thalidomide damage: the drug was distributed through the health service and there is a clear responsibility on them. I hope the Government will not lean on that settlement of over 40 years ago—it is out of date, out of time and inadequate—but set up a compensation scheme for the victims. In that way they will replace injustice with justice.

Lord Darzi of Denham: My Lords, we recognise that thalidomide victims are a special group who have been struck by a terrible tragedy that blighted their lives. We also recognise the tremendous contribution that the noble Lord, Lord Ashley, has made to that cause.

Back in 1974 the Government gave a grant to the tune of £5 million. In 1978 they gave £0.8 million. Most of that was related to the misunderstanding of the taxed treatment of the fund. In 1996 the Government made a final once-and-for-all payment to the trust of £7 million in recognition of the unique and tragic circumstances that surrounded the thalidomide disaster. The Thalidomide Trust has significant assets, and my right honourable friend the Secretary of State for Health has requested that officials should meet the trust to discuss some of the challenges facing it in the future.

Perhaps I may say where the UK victims are in relation to some of our European neighbours. Thalidomide sufferers in the UK receive typically about £18,000 a year, but those with more severe disabilities receive more than that. Victims in Ireland receive £4,000 while in Germany they receive £8,000. Let us not forget also that the NHS provides a healthcare system that is very different from our European neighbours, being universally available, tax-funded and free at the point of need. I hope I have reassured the noble Lord that the victims of this tragic incident are well supported not only through the trust, to which we are very grateful, but through the provision of health and social care.

Baroness Tonge: My Lords, I understand that only 457 thalidomide victims remain in this country. That is not a huge number, but their disability and difficulties are of course increasing as they get older; everyone understands that. Would it be possible for the Minister to ask the Thalidomide Trust to do an urgent individual needs assessment of each of those 457 people and then come back to the Government for supplementary income if it felt it necessary?

Lord Darzi of Denham: My Lords, as I said, my right honourable friend the Secretary of State for Health wrote to the Thalidomide Trust asking it to meet our officials. Unfortunately, that has not happened; it was refused. The noble Baroness will be aware that we have many initiatives within the NHS that will be extremely beneficial to victims of the thalidomide tragedy, including the musculoskeletal services framework and some of the direct payments that we have recently been debating in Committee on the Health Bill, as well as the emergence and development of prosthetic-limb technologies in the 1960s. Today, as noble Lords know, prosthetic limbs are provided free of charge throughout the NHS to such victims. There are many policies, but if the trust believes that we can help it with a needs assessment, we will be more than happy to do so.

Lord Morris of Manchester: My Lords, will my noble friend Lord Darzi say what effect the change in the law now on Crown immunity could have on any assessment today of the responsibility of the National Health Service in this medical disaster, as the prescriber of thalidomide?

Lord Darzi of Denham: My Lords, I agree with the noble Lord. Back in the late 1950s and early 1960s the regulations on the prescription and approval of drugs were different from those at the moment. We should recognise the tremendous amount of work that has gone into the marketing, testing and regulation of drugs, as encapsulated in the Medicines Act 1968, from which society has benefited greatly.

Lord Hunt of Wirral: My Lords, I had not planned to intervene but do so now from the Back Benches. I declare an interest: I acted for one of the victims of the thalidomide disaster. Thanks to the noble work of the noble Lord, Lord Ashley of Stoke, the individual concerned—who, sadly, has recently died—received damages in that case. However, the original settlement was only 40 per cent of the damages to which she was entitled. She received the largest sum, but there was still a 60 per cent shortfall. Will the Minister please look again at the lack of seamless care between social services and the National Health Service? It is causing problems for those who, as the noble Baroness just mentioned, are still alive but are not getting the treatment that they should receive.

Lord Darzi of Denham: My Lords, I am not entirely sure whether the case was against the state or against Diageo.

Lord Hunt of Wirral: My Lords, it was against the defendants at the time. The noble Lord, Lord Ashley of Stoke, ran a tremendous campaign and, as a result, damages were achieved, but they were only 40 per cent of the entitlement.

Lord Darzi of Denham: My Lords, I am grateful for that explanation and will look into this further. I have spent the past 18 months in your Lordships' House trying to address the issue of integration between health and social care. As the Health Bill goes through, with your Lordships’ support, we will see some of the fruits of that.

Letter to Lord Darzi, British Health Minister from Thalidomider Gary Skyner 16/03/2009

Professor, The Lord Darzi of Denham KBE, House of Lords, London, SW1A 0PW

Dear Lord Darzi,

Please allow me to introduce myself, my name is Gary Skyner, I was the second born Thalidomide victim in Great Britain. A tragedy of which I am sure you are well aware of due to your position in the House of Lords. 

Late last week, it was brought to my attention, comments that you made in the house with regard to the status of the remaining 457 Thalidomide victims and their increased needs for financial assistance and medical expertise from the Department of Health. 

Can I ask you, have you ever in your life had the indignity of having to ask a third party to clean your back side after moving your bowels? Have you ever had the indignity of having a third party place you in a bath and had them clean you from head to toe? Have you ever visited a theme park and been a bigger attraction to the visitors than the actual themed events because of your physical appearance? 

Well Sir, these are just a few of the indignities that I, as one person have suffered throughout my life, there are many, many more. You can imagine how incensed I felt; reading your comments over the internet where you appear to be intimating that Thalidomide victims are living in a land of milk and honey! everything in our garden is rosy! I find this a typical statement from a member of the establishment who is totally and completely out of touch with reality, moreover, the wants and needs of Thalidomide victims!

May I remind you that every single law in this country that appertains to the regulation of taking and prescribing drugs is now in place as a direct result of the Thalidomide tragedy. Having perused your website, it comes as no surprise to me that you are a medic yourself and therefore Sir, I suggest that you seek to protect the ranks of your own kind who caused this massive debacle in the late 1950s / 1960s and since then, your old school tie network along with freemason involvement has meant that the old school tie brigade have all covered each others backs in this war of attrition and you all long for the day that the last Thalidomide victim leaves this earth so you and your kind can sleep safely in your beds not having to think of this huge tragedy bestowed upon us by a Government who failed in their duty of care and still fifty years on fail in their duty of care towards us. 

Sir, let me advise you that if money were able to be passed down a hosepipe and placed on high pressure you could not get enough of it through either my front door or others like me to compensate for the indignity, pain and suffering that we have endured over the last fifty years. 

Quite frankly, I assume, for your able bodied self, nothing other than the comments that you made in the house because as stated earlier in this correspondence, you are totally out of touch with reality. I find your comments ignorant at best and downright insulting at worst. I feel so strongly, that I would suggest following your comments, you do the right thing and resign your post in the House of Lords as your comments seek to hinder and not help our worthwhile campaign to right the wrongs that happened to us as individuals and moreover, our mothers who were guaranteed that this was a safe drug to take with the blessing of their own GP, which renders the Government of the day vicariously liable for the tragedy. 

Sir, I implore you to change your stance with regard to compensation to be paid directly from the Government and further implore you to ensure that a substantial compensation package, financial and medical assistance be put in place before the 50th anniversary on 1st October 2009. 

I challenge you, if you concede to being out of touch with reality to spend maybe a weekend or even a week with my good self and witness for yourself the problems that I face on a daily basis, and I Sir am only two-limb deficient, thankfully with the use of my legs. The most severely disabled Thalidomide victims during days of depression are not able to put on a coat and go for a walk. 

I trust that this letter brings to your attention the stark realities of Thalidomide and how it has severely blighted families, let alone individuals for fifty years. The Government of the day and current Government is Sir, in my opinion a disgrace to allow this injustice to continue one minute longer. 

In closing, I note that you advised the House that an invitation to meet with officials from the Thalidomide Trust appears to have fallen on deaf ears, I believe Sir, that to be a malicious falsehood and I am sure should you take the time to write or telephone Doctor Martin Johnson or The Honourable Mr. Justice Wright (Sir Michael Wright) that they would down tools, change diaries etc to meet with you or your staff. 

I hope that my anger and distain for your comments has come across loud and clear in this correspondence and I eagerly await your reply. 

Yours sincerely,

Gary Skyner

icta 2

© Copyright ICTA campaign. Designed by awantego.com