Thalidomide Ireland

changing, challenging and facing the future

OPINION: I have survived and my life is ordinary . . . ordinary despite a painful history of incompetence, neglect and disgrace by my country, writes Mary Duffy, Irish Times May 4, 2010

ALMOST TO this very day, 25 years ago, together with Maggie McFadden (now Woods), I wrote a letter to this paper, seeking for the first time to meet other thalidomide survivors.

We even went on the Late Late Show . We created quite a stir. I was quickly labeled wild, untamed and ungrateful, a badge I still carry with pride today. Despite the wide coverage we got one response to our call to meet up and celebrate 25 years of thalidomide, and that wasn’t even from a thalidomide survivor living in this State.

And now, as we approach our half century we find, to everyone’s surprise (especially our own), that we are still here. Maggie and me might have given up on celebrating 25 years of thalidomide but we are still talking, laughing and trying to negotiate and understand our lives. We are growing older with grace and with courage, but with not a lot of conviction. Our needs are more urgent and the response from our Government, even after 50 years, is still one of intransigence and ignorance.

This is really nothing new for me. All my life, my needs as a disabled person have been overlooked, ignored, not provided for (because “Mary Duffy, you are so able”) . . .

As well as denying a fundamental part of my experience, denying my disability creates in me a deep confusion, especially when such comments are delivered as if it is some kind of triumph and that to suggest I really am disabled would be a great failure, a real defeat.

I know now that I am capable, confident, competent and disabled. But as a child I felt contradicting the assertion that I was “not handicapped” meant institutionalisation and separation from my family and community.

As an adult, my experience of trying to access services in order to meet my needs in relation to my disability has never been easy. It has always been very challenging, often crushing and hugely disempowering.

Life has straddled the knife-edge between self-reliance and exhaustion. I am conflicted by a reluctance to ask for what I need, because I can’t bear the pain of being refused.

And so my life experience of being refused leaves me sensitive to feeling excluded and rendered invisible. And this is exactly how I feel now in response to the current proposal from Mary Harney. Her revised offer of compensation opens a deep wound and sticks the knife in: “Government offers €2 million to 32 thalidomide victims” – The Irish Times , April 28th.

While being refused help is extremely difficult, the pain is further exacerbated when I feel I am disregarded by those, such as health and disability “professionals” who have a degree of appreciation and insight into the barriers that I, and others like me, face on a daily basis. It is so much easier to cope with ignorance than wilful dismissal and disregard.

The way that the original settlement was arrived at under duress was unfair. The focus on fixing us up with artificial limbs was, at best, misguided. The subsequent failure to protect and provide for our needs as children was awesomely neglectful.

But the failure to deliver on promises of open and free access to health services, and to repeat this same offer, 35 years later, with this same flaw of not being on a statutory basis, has been a cruel and unusual form of punishment for me as a thalidomide survivor.

Compounding the negligence and disrespect is the long search for survivors to meet and the struggle to have ordinary, decent lives that are now being overshadowed by the challenge of facing the future.

But our lives are not ordinary and this week the Minister’s offer makes this clear. Or maybe it doesn’t. Maybe we have achieved what has eluded us all our lives. We are ordinary. Our lives are ordinary. The Minister’s refusal to release documents and to engage in meaningful discussion is ordinary.

Ordinary in a long line of incompetence, neglect and disgrace by this State. We are following in a long line of citizens, like those with Hepatitis C, who have been wounded by the negligence of a State whose first response has been to protect itself and not to acknowledge its injured citizens.

The presentation of this latest offer, with its chilly reference to compassion and no admission of liability, with its total lack of awareness of the wrong that was done really does make us ordinary.

So it is time for the Government to do the ordinary decent thing. It is time to acknowledge the wrong that was done and that needs to righted. It is long past time for a fair and a just and a negotiated settlement.

This is all that is required to make our less ordinary lives decent.

UK Thalidomider to feature in Fair City

The English actor Mat Fraser, will appear from June 7th, in Fair City on RTE 1 Television.  He plays the role of David Osbourne, the son Esther gave up for adoption.

 Mat has shortened arms and since 1995 has been a professional actor. He also writes his own shows; his solo comedy show From Freak To Clique has toured extensively.  Mat was interviewed for "A Life Less Ordinary" on RTE Radio 1. You can hear it here

To follow his character David Osbourne's story see the Fair City website 

Pioneering advocacy of the committee of the Irish Thalidomide Association.

Minister of State with responsibility for Primary Care Roisin Shortall TD, presents  Finola Cassidy of the Irish Thalidomide Association with a Healthcare Innovation Award, in  recognition of the pioneering advocacy of the committee of the Irish Thalidomide Association.


 

Survivors’ fight goes on

Sunday Business Post  By Susan Mitchell, Health Correspondent

Joseph Dooley knows something is not quite right. Recently, he asked whether he was born in a factory.

This, he believed, may explain why he doesn’t look like the people he sees around him. It might explain why he was born without feet or thumbs and why he has intellectual difficulties.

‘‘He is intelligent enough to know he is not right," said Patricia Yates.

Yates is his first cousin. Their mothers were sisters and she and Joseph are only children. ‘‘We are a very close-knit family. I grew up coming over to Ireland every summer and knew Joseph from a very early age. He is like a brother," she said.

Dooley’s mother looked after him until her mid-80s, but needed help. Yates, a nurse who specialised in intellectual disability, was living in Britain but returned to Ireland in 2007 to support her aunt. It was supposed to be a temporary move, but she is still here and has become a permanent carer.

‘‘He appears profoundly mentally disabled, yet he has spikes of intelligence. He has interests. He didn’t go to school, but his mum taught him to read, which is quite amazing. He is really interested in medical stuff.

He reads about things like orthopaedics as he has had a lot of work done," Yates said.

Dooley needs ‘‘absolutely everything done for him. He needs help getting changed. He needs help with all personal care - with anything in the bathroom.

He doesn’t have thumbs. He has four fingers and he can’t do a lot with his hands. He has poor mobility. He was born with flipper feet. A surgeon made him feet so he can walk a little. He sort of hobbles really.

‘‘He also has poor digestion, so we have to take great care with what he eats. I make his meals and cut his food up for him. He can eat by himself but, because he has difficulty digesting his food, you can’t leave him on his own as he has been known to choke.

He needs constant supervision." Dooley’s mother took the anti-nausea drug thalidomide while pregnant with Dooley, who is now 49. He is one of 32 Irish survivors of the drug, which badly damaged their bodies, permanently scarring their lives and those of their families. Many are catastrophically disabled and four need 24-hour care.

Like thalidomide survivors all over the world, they and their families received a compensation package in 1975 which did not reflect the fact that they would live into middle age. However, unlike other survivors - such as the 466 British survivors who received a further €22 million and a comprehensive apology - the Irish ‘Thalidomiders’ have fought a lengthy battle with a Department of Health that has yet to open its records on the scandal and has stood firm on its offer of €62,500 each.

Dooley’s father, along with the father of Finola Cassidy, who is secretary of the Irish Thalidomide Association (ITA), set up the group Justice for Thalidomide. The state made a payment of a few thousand pounds to each ‘Thalidomider’ in the 1970s, but the necessary High Court approval for the original settlement, which involved legal minors, was not given.

The absence of this mandatory approval has rendered the original compensation package legally null and void, and has opened the way for survivors to individually sue the state for their injuries.

It is believed the then government’s legal advisers may not have offered the 1975 compensation deal for High Court approval because there was a real concern that a judge would have rejected the deal.

It is clear that the government of the day was worried that it had failed to warn people about the dangers of the drug before it was withdrawn. Then health minister Erskine Childers said many years later that the cabinet had decided not to warn people about the risk, so as not to alarm pregnant mothers at the time.

The drug was withdrawn by German pharmaceutical manufacturer Chemie Grinenthal in December 1961, but the Department of Health did not notify doctors and hospitals here until the following July. There are several Irish thalidomide survivors whose mothers began taking the drug as late as spring 1962.

The state gave survivors medical cards for life. Access to services and other aids are also supposed to be available as they need them. However, Cassidy disputes this.

‘‘In no way has that happened," she said. ‘‘Our Maggie Woods in Galway opens the doors in her home with her teeth as her house has not been adapted."

The ITA wants a statutory right to medical services, as was given to the hepatitis C victims. The ‘Thalidomiders’ believe they are entitled to no less.

Understandably, they also want an apology.

‘‘The minister said she could not do that as it would be an admission of liability," said Cassidy.

‘‘But there is an onus on the state to acknowledge the wrong that was done - not just to us, but to our parents. Many of our mothers had to live with huge guilt, anxiety and depression over what happened.

Many babies died. They and their families are often forgotten in all of this."

Health minister Mary Harney promised full voluntary disclosure of all documents relating to thalidomide in July.

‘‘Not a single file has crossed the table," said Cassidy. She said she was disappointed that Harney had had nothing new to say to the group last week.

‘‘She repeated the offer we rejected in April. She had nothing new to say. We asked if the payment could be treated as an interim settlement pending further negotiations of a care package, but she was not for turning."

It is a take-it-or-leave-it offer, as was the 1975 deal that was brokered between the then government and the families.

This time, however, they are not going to go away quietly.

The ITA plans to take legal action against Harney following her refusal to reconsider the compensation package offered in April.

The association believes the lump sums of €62,500 for each survivor, plus an annual lump sum of up to €3,680 is derisory.

It also believes a one-size fits all approach is misguided and wants survivors to be physically assessed and compensated on an individual basis.

The ITA does not believe the provision for special care packages - and financial assistance to help meet transport needs where necessary -would ensure access to care.

In the hepatitis C and haemophilia cases, the state initially fought against a comprehensive compensation package for survivors and their families, hiding behind legal arguments that admitted no wrong and made individuals take expensive legal fights through the courts for recognition of their suffering and a compensation package. It took several years to overturn this position.

Cassidy said she was ‘‘tired of fighting’’ for a fair deal.

Patricia Yates is also tired.

She never uses the word ‘burden’, but she would like to be able to spend more time with her son who lives in England and her husband who has been forced to commute back and forth.

She and her husband worked out that providing full-time care for Joseph would cost tens of thousands a year.

They don’t have that type of money, which is why the compensation is so important to them. ‘‘I will care for Joseph for as long as I possibly can.

My biggest worry is that I am not getting any younger and neither is my husband. If anything were to happen to me, my husband is not related to Joseph. I know he would do his best but that would be a huge undertaking for him," she said.

‘‘I am worried that, down the line, he will end up in an unsuitable institution and that would just be awful. He is a very gentle man and he is very vulnerable. We don’t know what will happen next. We would need to train people specifically to look after Joseph, as his needs are unique."

The ‘Thalidomiders’ are gaining political backing for their cause. Several Fianna Fáil backbenchers are known to be opposed to Harney’s stance on the compensation issue.

Most members of the Oireachtas health committee have offered their support.

Fine Gael and Labour have said Harney should have agreed to an interim arrangement.

In the hepatitis C and haemophilia cases, the government of the day was forced by legal argument and public opinion to change its mind.

The main opposition parties have promised to look at increased compensation for survivors if in government after the next election.

The next government is likely to be forced into a U-turn yet again.

SURVIVORS to take legal action against Minister Mary Harney

THALIDOMIDE SURVIVORS are to take legal action against Minister for Health Mary Harney following her refusal to reconsider the compensation package offered to the 32 people affected by the drug. 

The Irish Thalidomide Association yesterday met Ms Harney to seek negotiations on the compensation package offered last April. Ms Harney said she was not in a position to change the offer. Lump sums of €62,500 for each survivor, plus an annual lump sum of up to €3,680 each had been offered. There was also provision for special care packages and financial assistance to help meet transport needs where necessary. The association had said that offer was “derisory”.

The association’s secretary, Finola Cassidy, said she was saddened and disappointed that Ms Harney had “nothing new” to say to the group yesterday.

“She repeated the offer we rejected in April, she had nothing new to say. We asked if the payment could be treated as an interim settlement pending further negotiations of a care package, but she was not for turning.”

Ms Harney said she reiterated the terms of the package yesterday because she felt it was important that the group was aware that the offer would lapse if the payment was not taken up by the end of the year. However, she said there was no possibility the offer could be taken as an interim payment.

“I said no it couldn’t be an interim payment, this was the final offer from this Government. It was being done on an ex-gratia basis; it wasn’t going to affect their legal strategy; it wasn’t going to tie the hands of any future government, but it was certainly the final offer from this Government’s perspective,” Ms Harney told RTÉ Radio yesterday.

The Minister said she was disappointed by the association’s response.

“I’m sorry they’ve taken the view they have in relation to the meeting. I regret that very much, but we have put a lot of effort and a lot of thought into the needs of 32 people, particularly into their medical needs.”

The main Opposition parties have promised to look at increased compensation for survivors if in government after the general election.

 

‘Pass The Baton Tour’

This is about Thalidomide survivors passing on the baton of knowledge, information and stories to the next generation.  This initiative will travel across 47 known and a possible 72+ countries where the Thalidomide drug was administered.  ‘Pass The Baton' provides a managed and coordinated vehicle for every country’s survivors.

As survivors of the most notable medical catastrophe in history, have stories.  Our stories, which is made up by our experiences and our information represents all those who were affected and suffered. I also believe to have this medical catastrophe presented to the World by its survivors will be a truly a remarkable and a memorable event.   As we gift our stories, our knowledge and facts to the next generation we are carrying out an act which, in simplistic terms, is the greatest act anyone can do.

Is this ambitious?  Yes it definitely is; but there is a power in performing acts such as these and I believe that when everyone feels this power, all will succeed.  

Time is not our friend. The opportunities to create a new chapter in the history books and to make the World that much better for the next generations are limited.  The start of this initiative is urgent and I am asking for your support by registering

Action
If you are a Thalidomide survivor, please register immediately by sending an email to [email protected] with the subject text of ‘PTBT’.   
Please include in your email name and country  were you were born.  
For all other correspondence, please reply by sending an email to [email protected] with a subject text which references your correspondence.   
By registering you are indicating you are interested to learn more about ‘Pass The Baton Tour’ and ways you can participate.   You will be kept informed of news and events surrounding this initiative.

Lastly, the ‘Pass The Baton Tour’ success relies on all survivors being involved.  Please share this initiative with other survivors and ask for them to please register their support for ‘Pass The Baton Tour’.

I want to take this opportunity to thank you for your time and hopefully your support.
Kelvin Mickelson
[email protected]
Australian Mobile:  +61 417 622 707Add your main content here - text, photos, videos, addons, whatever you want!

 

About Me

Born and raised in central Canada, I am a Thalidomide survivor.  In 1989, I migrated to Australia, which is where I am currently based with my young family.   I have a fairly long history of being involved with the Thalidomide Victims Association of Canada.  In Australia, I have been warmly welcomed by Thalidomide survivors across the continent.  

I am now approaching 50 years of age and have a fear of slowing down.  Like many, I wrestle with the dilemma of wanting to do so many things while I am able.   At the top of my list is to bring to fruition a global initiative which sees the Thalidomide survivors from around the World, present to the World, their stories, their history, their challenges, their triumphs, and their knowledge.  

Australian Thalidomiders to launch Class Action Lawsuit

Five Australians are suing the German drug company responsible for thalidomide. A writ to be served on Grunenthal claims it should have known the drug was not adequately tested.  The writ states that five years before thalidomide was withdrawn from sale, Grunenthal received reports of birth deformities linked to the drug. The company is accused of ignoring the reports, intimidating people who complained and failing to admit the drug caused birth defects.

Lawyer Peter Gordon and the firm Slater and Gordon are accusing Grunenthal of negligence for allowing the drug to be sold without proper testing, representing it as completely safe, and failing to withdraw the drug from the market after discovering the potential risks it posed.  Janelle Robbins is leading the class action suit against the company.  The action follows the recent successful settlement with the British group Diageo for 45 Australian and New Zealand thalidomiders.

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The Irish Times - Saturday, May 1, 2010 Editorial

ONE OF the key recommendations of recent reports on improving patient safety in the health service is for doctors and other healthcare professionals to learn to openly acknowledge mistakes when they occur. Offering a sincere apology is rated as highly important by those affected by clinical mistakes, an approach which contrasts with past rigid legal advice to admit nothing while avoiding unnecessary discussion of the incident. How ironic then that Minister for Health Mary Harney, a vocal advocate for greater patient safety, should seek to use legal arguments to avoid dealing fairly and openly with survivors of thalidomide.

By not meeting them to clarify important aspects of a settlement prior to announcing a compensation package this week; by relying on the State Claims Agency to calculate the package in a “take it or leave it” manner; and by insisting there is no legal obligation on the State in the matter, she has added unnecessary insult to the 32 victims of thalidomide and their families. But it is her continued failure to offer a full government apology to victims that is most difficult to understand... continued.

"Compensation" package -rejected

Irish Thalidomide Association has expressed disappointment with the Government's compensation offer.  Spokesperson Finola Cassidy said the financial offer seemed derisory.

The Government compensation package for victims of thalidomide was derisory and has left those affected

“shell-shocked and very disappointed”, the Irish Thalidomide Association said today.


The association said it will recommend rejection of the compensation package, of lump sums of €62,500 for each of the 32 people affected plus an annual lump sum of up to €3,680 each, to its members.


Minister for Health Mary Harney announced the
measures earlier this week following a meeting with members of the association. The group was seeking compensation, an apology and an explanation for how the State handled the drug scandal in the 1960s.


Children born to women who took the drug while they were pregnant suffered problems including missing or shortened limbs, missing ears and hearing problems. The survivors are all now in their late 40s.

Finola Cassidy, said members had not been listened to in any constructive manner.

 READ & See THE REPORTS BY CLICKING BELOW. See also today's press release

Thalidomide Compensation Report

 Press Release April 29, 2010.doc

 Austin O'Carroll Interviewed on TV3 with clip of Mary Harney

Public Not Warned -  Despite Withdrawal

THE DEPARTMENT of Health failed to immediately warn the public about the dangers of thalidomide when it was withdrawn by its German manufacturer in 1961 because “suspicions about the drug had not been confirmed”, it was subsequently claimed in a memorandum to cabinet.

Cabinet files from 1973 and 1974, which deal with the government’s response to the scandal at the time, have been viewed in the National Archives by The Irish Times. Read the full story in The Irish Times

 

 

Justice for Irish thalidomide survivors 

Click Here to Sign our Petition

 Irish Times Editorial Feb 15, 2010

"A lump sum was paid to parents decades ago but amounts were small as it was not thought thalidomide victims would live long. There is a moral obligation on the Government to revisit the issue of State compensation in light of the welcome longevity of survivors. In the context of settlements recently agreed in Britain and the North, the amounts of money involved are not large enough for arguments concerning economic circumstances to hold water. Brian Cowen and Mary Harney should engage meaningfully with survivors". read the full editorial


 

Click here to Sign Our Petition

The thalidomide catastrophe was not inevitable.  Early warning signs of the tragic effect of this wholly untested drug were ignored.  And, even after it was known that it caused birth defects, the Irish Government delayed for several months in withdrawing it.

 

We call on the Government of Ireland to begin an effective dialogue with the Irish Thalidomide Association, in order to ensure that the wrong that occurred by licensing the drug is righted.

 

Furthermore, we call on Brian Cowen, as An Taoiseach of the Irish State, to personally and sincerely apologise to all  Irish survivors and their families.

 

We demand that the process of revision of the inadequate, and shameful  1975 thalidomide "arrangement," is escalated so that adequate  provision can now be made for the future of thalidomide survivors in Ireland.

 

Click here to sign our petition

 

 

Department Statement on Thalidomide July 9, 2012

Minister Reilly has met with the groups representing Thalidomide survivors and has been trying to make progress on reaching an agreement that takes account of their concerns and needs. A key objective of the Minister is to provide for the health and personal social care needs of the persons involved. To that end – among the actions taken - the Department and the HSE have prepared arrangements to ensure that all survivors of Thalidomide are provided with an assessment of their health needs led by Dr Paul O’Connell, Consultant Rheumatologist, Beaumont Hospital and a senior HSE nursing official. The discussions have also dealt with the issue of financial needs. The Minister has indicated that he is prepared to consider a financial gesture of goodwill. The State has been making payments to Irish survivors of Thalidomide since 1975. The payments have been made because it was considered appropriate to make provision for survivors of Thalidomide. As the State does not bear a legal liability the payments have not been made in a legal context. The payments made by the Irish State were designed to augment payments made to the survivors by the German Foundation set up to compensate survivors of the drug. Minister Reilly has stated that he is willing to enter into discussions about a • healthcare package on a non statutory basis • financial gesture of goodwill having regard to current economic circumstances • statement to the Dail recognising the challenges faced by survivors The Irish Thalidomide Association has stated that it fundamentally disagrees with the State's position and is unwilling to engage on this basis. Having taken legal advice, the Minister is informed that the State does not have a legal liability for the injuries suffered by Irish survivors of Thalidomide. All Attorneys General who have considered this issue have concurred with this position. The Minister wishes to make clear that his department stands ready to meet when the representatives of survivors of Thalidomide would wish to do so.

What the Govenment Offered Irish Thalidomide Survivors, 27 April 2010

  • A once-off  ex-gratia payment of €2m (amounting to €62,500 each) to be divided equally between the Irish survivors, as a practical expression of the Government's sympathy;

ITA members reject this because it is derisory. The original 1975 'arrangement' was based on shortened life expectancy, with survivors not expected to live past our 20s. This offer will not address our financial needs into old age as our deteriorating health and mobility decreases.

  • The payment of an annual lump sum, in addition to current payments, equivalent to a further German annual payment which commenced in 2009, of up to €3,680, in the most severe category.

Having waited almost a year for the State Claims Agency report, the Government has shown no initiative in finding a reasonable solution to the Thalidomide issue.  This offer of an extra €1 to €8 a day adds insult to injury for severally disabled survivors.  Continuing to "maintain the historical relativity of German and Irish compensation rates" shows a flawed strategy on behalf of the state considering our fellow German survivors went on hunger strike to protest against this aspect of the compensation in 2009.

  • Provision whereby, if an individual thalidomide survivor has applied for, but does not qualify for either the Disabled Drivers Tax Concession Scheme or the Motorised Transport Grant, their cases will be examined with a view to providing an equivalent level of financial assistance to assist with their transport needs.

This grant is already available to nearly all thalidomiders so it does not address the real cost of adaptions in any way. The cost of adapting a car for one of the ITA's members currently costs €16,000.The maximum available on the motorised transport grant is €5,020.50.

  • Provision for special care packages for thalidomide survivors living in Ireland, to be provided following individual assessments of need carried out by an independent expert to be appointed by the Minister. Dr. Paul O’Connell, Consultant Rheumatologist, Beaumont Hospital has agreed to conduct multi-disciplinary assessments for this purpose.  
  • The designation of a senior manager in the HSE to act as liaison with regard to the ongoing health and personal social services needs of the Irish survivors. Ms Carmel Buckley, a senior nursing official in the HSE will act as liaison for this purpose.

This offer is simply more ink on paper and is a repeat of the failed promises in the 1970s that were given to our parents, who were fearful that our future medical needs would not be met.  Unless the medical needs are put on a statutory footing then it is the same flawed offer of 35 years ago.

 


Finola Cassidy Spokesperson & Secretary of Irish Thalidomide Association call 086 915 1235

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