I welcome Ms Carmel Daly-McDonnell and Mr. Michael Coffey from the Irish Thalidomide Survivors Association and Dr. Austin O'Carroll and Ms Maggie Woods from the Irish Thalidomide Association. I offer our apologies to them for being late in getting to them but we have had a busy meeting. Before we begin, I draw attention to the fact that while the members of the joint committee have absolute privilege, the same privilege does not apply to witnesses appearing before the committee. Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official by name or in such a way as to make him or her identifiable. We have received the associations' presentations which members have studied. We shall hear directly from the delegates. After their presentations, we shall take questions from members of the committee.
Thalidomide Services: Discussion.
Ms Carmel Daly-McDonnell
In five minutes it is only possible to outline part of the impact thalidomide has had on our lives. Each one of us has unique problems which need to be addressed accordingly.
In 1975, after a decade of intense lobbying by our parents, commitments were entered into by the Government to provide compensation and essential services for the Irish thalidomide survivors. To quote the then Tánaiste and Minister for Health, the late Brendan Corish, "The Government has been concerned to see that the children are provided with all services and aids necessitated by their handicaps in order for them to lead as normal as life as possible." However, all of our needs — car adaptations, to take one example — cannot be met under the auspices of the HSE. The changing of expensive equipment from one car to another through the disabled driver's grant every two years is extremely costly. For a wheelchair user, the cost is in the region of €3,000. This excludes the cost of changing one's car. Home adaptation, purpose built bathrooms and bedrooms, environmental controls and tracking systems for hoist installation are just some of the requirements to lead as normal a life as possible.
The HSE does not address our ever increasing need for more facilities. Our health needs are changing, old age is approaching and is already adding to our significant disabilities. The cost of our needs should not come directly out of the HSE budgets. Important requests have been refused or denied on the grounds that care and services required were not pre-budgeted for. Delays caused by administrative procedures are significant and result in agonising distress to the service user, and these procedures include repairs, replacement of wheelchairs, hearing aids, cushions and so on. Our compensation was granted on constitutional grounds. It adds insult to injury to try to provide for our needs using a system that does not work or cater for us.
Some of the basic activities that were once possible now cause aggressive pain. This has a knock-on effect of adding extra stress, worry and work for our partners and our children. Urgent daily living support is now needed in areas such as home help and personal assistants. HSE cutbacks in most of these services create profound emotional insecurity. It is likely that additional support will be required in future. Severe pain from nerve damage, joint and muscle overuse, weight gain that limits reach and bending, toileting, dressing, showering, cooking and child care all represent a short outline of the problems that occur daily.
Our current levels of allowances are needed to support the extra expenditure incurred by our disabilities. Our clothes need to be adapted, and in some cases they need to be made. Heating can be excessive for those with restricted mobility. There is a lack of awareness among health care professionals in Ireland of the existence of specialised aids and medical knowledge on thalidomide. Providing our health care typically involves different specialists attempting to address diverse problems separately, leaving us ricocheting between care providers who have little or no knowledge of the thalidomide condition. Thalidomide is outside the knowledge and experience of the typical GP, consultant, OT and primary care providers. A network between the primary care provider and the European centre of excellence will save time, stress and money for the Government and thalidomide survivors.
Although there has been limited research on the thalidomide condition, there is evidence that the health of people affected by thalidomide has deteriorated to a greater extent than the health of those of a similar age who are not affected. Research shows that each thalidomide survivor has at least five of the health problems listed on the presentation hand-out.
We would like to see the following goals achieved: the re-installation of the Irish Thalidomide Medicines Board; our transportation requirements being addressed; home aids and services; a regular review of our welfare; reimbursement of early expenses connected to fulfilling legitimate expectation; review of monetary provision; further clarity concerning agreements for funding our current allowances; and a more streamlined system of allowance and welfare provision. All the aforesaid is expounded in more detail in the hand-out.
The agreement reached by the Government in 1975 gave us and our parents a legitimate expectation that our welfare was in safe hands. We were to be given an allowance, the monetary value of which would give us comfortable lives. We were to have unhindered access to essential aids and services necessitated by our significant disabilities. The commitment was made to redress the catastrophic effect a man-made drug had on our lives. All we seek is the perpetual commitment given by our Government to make sure our evolving needs are upheld. We only seek some security as we approach the twilight of our lives.
Dr. Austin O’Carroll
I thank the Chairman and Members for allowing us to address the committee today. The very first scandal to rock the Irish health system was the thalidomide tragedy. This drug, which was licensed by the State, was used by pregnant mothers to minimise the effects of morning sickness and insomnia during pregnancy. It had catastrophic consequence for 32 Irish children born with birth deformities including no limbs or shortened limbs, as well as causing an unknown number of miscarriages and still births.
Fifty years have passed since children were born with horrific disabilities and 35 years have passed since the State persuaded our parents to take a derisory "take it or leave it" package which took no account of middle or old age, as we were not expected to survive. The State has witnessed several other health scandals since then, and has reached a just and equitable settlement in negotiation with those affected by each tragic mistake, yet the first scandal still lingers on. Those of us affected by thalidomide have experienced increasing disability over the past 50 years. Research has shown that two thirds of us have experienced worsening of our disability. This has affected our ability to conduct the normal activities of daily living. Two thirds of us experience chronic pain and many of us in our late forties are affected by osteoarthritis, a condition that usually only emerges after the age of 70. We are facing a future of deteriorating health, progressive immobility and increasing dependency.
The State has never admitted any responsibility for the events that occurred. In our discussions with the Department, we have been repeatedly told that the State does not accept any liability. To our minds, the State doth protest too much. This repeated denial is despite the fact that the then Minister of Health, former Deputy Seán McEntee, licensed the medication. Other jurisdictions such as the US and France refused to licence thalidomide, which ensured that almost nobody in those countries was affected. It has been well documented that the Irish State failed to issue a public warning once the effects of thalidomide were known, and that this resulted in Irish people being born unnecessarily and unjustly affected y thalidomide.
The British Government has publicly recognised that it failed to fulfil its responsibility to regulate dangerous medications, and has issued an apology. The Irish State claims it has no culpability, yet the Department of Health and Children has refused access to documentation from this period relating to the events that occurred around the time of the thalidomide health catastrophe in Ireland. Why? In our dealings with the Department, the strong implication has been that our licensing laws were law because "we did not know better at that time". However, as we have seen with other scandals, such a defence is simply not acceptable to the Irish people, especially when other jurisdictions did know better. It is recognised that Irish mothers benefitted from the significant tightening of drug licensing regulation, once the thalidomide scandal had highlighted the State's failure to protect its citizens.
The Minister for Health and Children is awaiting a report from the State Claims Agency before meeting the Irish Thalidomide Association. Despite making numerous requests, we have had no input into this process, which is unprecedented for similar claims of this nature made on the Irish State. This is unacceptable to us. Our clear understanding is that despite a remit from the Minister that allowed for a broad interpretation of the form of compensation that could be offered to people affected by thalidomide, the State Claims Agency has adopted an unnecessarily restrictive and narrow interpretation that only allows for redress.
The British Government has provided significantly more funding, in spite of the fact that the original UK settlement was a compensation arrangement with the provider and distributor at the time, namely, Diageo. The thalidomide tragedy will become an even greater tragedy if our Government does not grasp the opportunity that exists to provide a full and proper compensation to thalidomide survivors. Precedent exists where Irish citizens were affected by faulty medicinal products. The State recognised that its original settlement with those affected by contaminated blood products was insufficient and renegotiated a proper compensation package. To claim that the Government is financially constrained is ridiculous, given that there are only 32 of us. To say that the timing is wrong due to the recession is tragic, as our timing is due to our crumbling health.
The Irish Thalidomide Association represents 23 of the 32 acknowledged thalidomide survivors and 23 of the 27 survivors known to have made contact with associations for people affected by thalidomide.
We are asking the committee to make several recommendations to the Government. First, we ask that the State publicly accept responsibility for not protecting its citizens and that the Taoiseach issue an apology on behalf of the Government to those of us affected by thalidomide. Second, full, proper and just disclosure must be brought to this sorry episode by the negotiation with our and association and others of a fair and equitable compensation programme for people with thalidomide. Third, we ask that legislation be introduced to ensure people affected by thalidomide will have protected and guaranteed access to a package of health services that will ensure they will remain as independent as possible. Just like anybody else, we want to want to live a normal and fulfilling life. We ask for the committee's support in achieving this aim.
I thank Dr. O'Carroll for his presentation. I propose that members put their questions to him and that he answer them together, after which Mr. Coffey and Ms Woods may wish to contribute.
I thank the delegates for attending. I note from Dr. O'Carroll's statement that the Minister has not engaged with the Irish Thalidomide Association, although I understand it has had discussions with the Department during the years. Does Dr. O'Carroll have an expectation that there will be interaction with the Minister? The fact that the association is so small is both an advantage and a hindrance. It is an advantage because the small number of persons involved means that any compensation package will cost relatively little, but it is a hindrance in that it is more difficult for such a small group to exert influence. If the association had 10,000 members, I am sure progress would have been made by now. It is for these reasons that the committee should recognise that this is a special case.
Do the association's members have medical or long-term illness cards, or what arrangement is in place to service their medical needs? Dr. O'Carroll expressed concern about health service cutbacks. Have the cuts impacted on the association's members and, if so, to what extent? I would be surprised, where there is such an obvious need and the overall cost is so low, that reductions in expenditure should come into play. Logic and decency would suggest this is a special group, the members of which have needs which, although they may change and develop over time, can nevertheless be met at a cost that is negligible relative to the overall health budget. It is important to recognise the changing nature of the needs of thalidomide survivors. Ageing is more of an issue for people with a physical difficulty than it is for persons with reasonable health.
Dr. O'Carroll asks that the State officially recognise the situation of the association's members. It is self-evident that it should be so, given that it was the State which licensed the medication. In saying this, I am not casting aspersions on any person's actions or motivations at the time. However, the reality is that the State licensed a substance which had devastating health consequences for the unborn children of the women who were prescribed it. That should be publicly acknowledged.
As I said, a compensation scheme for some 30 people will not be costly. The difficulty is that the association does not have the mass of members to exert an influence on the political process. That puts a greater onus on the committee to be of assistance than in the case of a larger organisation with greater leverage. We must lead the way, rather than merely offer support.
I welcome the delegates. This is an issue that has been ongoing for a long time and must now be addressed without delay.
Regarding the association's engagement with the State, Dr. O'Carroll has said the Government is awaiting a report from the State Claims Agency before meeting members. My understanding is that the association has not had any significant degree of engagement in negotiating what its members hope to gain from the process. This must be addressed immediately in order that the delegates will be in a position to communicate clearly what is required.
I support what Deputy Neville said about the State's culpability. The reality is that it licensed this product and, therefore, has a clear responsibility. Dr. O'Carroll's message was loud and clear in terms of the need for this to be acknowledged, for an apology to issue and for adequate compensation and supports to be provided.
My second point relates to the supports needed. Responsibility in this area obviously involves other Departments, apart from the Department of Health and Children. For example, the Department of the Environment, Heritage and Local Government has a role in home adaptations. Will the delegates clarify how they see these supports being delivered? The association's members obviously do not want to have to go back to the State again and again to explain that their needs have evolved since their last representation. Does Dr. O'Carroll envisage an individual tailored package of supports for each person that is capable of being adapted according to his or her changing needs?
I thank Dr. O'Carroll for his presentation. There are two issues to consider, the first of which concerns the State Claims Agency and the association's application for further funding and recognition. In regard to State liability, as a former Minister, I would be very slow to attribute liability to the State. I am not a legal person but I see a difficulty in regard to the Irish Medicines Board, what it does and does not license and how much culpability can be assigned to it where a particular medicine is marketed on the basis that it does not have ill effects. I would prefer to await the decision of the State Claims Agency in this matter. I would have assumed that attention would have turned to the culpability or otherwise of the company which manufactured the drugs. I am sure that happened at the time. As I understand it, the State Claims Agency will report very soon, in the next week or so. After the report has been considered by the Government, I understand the Minister will meet the delegates.
Second, what I am particularly interested to discover at this meeting, as we await the decision of the State Claims Agency, is whether the association's members are receiving the maximum level and quality of health care to meet their needs. That care is delivered by the State through the health service. Have the delegates had any meetings with management of the Health Service Executive to examine what is available? I assume the association provides supports for its members. How does it see this fitting into the overall programme of delivery of a high quality service? Everyone should receive the level of service that fits his or her need. In the case of persons with severe disabilities, it is incumbent on us to ensure their entitlements will be assured and not be impinged upon by cutbacks in expenditure.
I thank the delegation for joining us. People of a certain age are familiar with the word "thalidomide" and the details of what happened to the children concerned. It should not have happened and would not have happened if the symptoms and causes had been recognised sooner. The delegates are absolutely right to equate it with the hepatitis C scandal.
In many ways, its discovery and how it was linked was quite a simple process. While it is easy for me to state it was a simple process, I did not discover it but I am acquainted with the woman who did. She has told me how she made the link between one and the other and, ultimately, it appears to be such a simple matter that one must question why no one else spotted it. When thalidomide was in use as a drug, the general population lacked the requisite knowledge regarding the possible effects of drugs. Equally, foresight was lacking as to how those who would survive would need additional care as they grew older. One can accept this is how society then was.
Another point I have heard over the years is that people in Ireland are highly conscious of litigation. While this is the case, it is for a very good reason. In most other countries, when people survive a dramatic episode in their lives that leaves them with a disability, the State usually takes up the slack and provides for them in respect of housing, medical care and the various apparatuses one might require. In northern European states in particular, the state usually takes up the slack. However, this is not the case in Ireland, where the State usually hands over matters to the private sector. It is treated as a civil matter whereby one takes a court case to get as much money as possible, lest one requires house adaptation, further medical care and so on. This is the reason for such litigiousness. Were the State here to take up the slack, I expect our behaviour would be the same as that of other northern Europeans.
Was compensation ever paid in the initial stages when people realised what was happening? Do the witnesses argue that such compensation was directed primarily towards their parents? Second, am I correct to assume it is too late to pursue the manufacturers? If this is the case, the State, which licensed the drugs and so on, clearly is the entity with which the witnesses must deal. What is the current status in this regard, aside from the anticipated report, the publication date of which is unknown? The witnesses should expand on the points raised in these questions.
I thank the witnesses for their attendance. I am of the generation that remembers vividly the question as to whether one should take the medication for morning sickness. I assure the witnesses that under the chairmanship of Deputy Ó Fearghaíl, this joint committee will do its best to do anything it can to help them. I believe the State should take responsibility in this regard. As Deputy Kathleen Lynch pointed out, if other countries can do so, this State also should do so. The failure of the Government to take responsibility is a serious matter. If it is true that Seán MacEntee allowed this to go through, the State should stand up and be counted. Members will do anything they can to help witnesses and I thank both groups for their presentations. Were Dr. O'Carroll to provide me with a copy, I will raise the matter in the Seanad tomorrow morning on the Order of Business.
It can be supplied. I note that I am obliged to call members of the joint committee before visitors.
I apologise for my absence at the outset as I was at another meeting. In common with Senator Mary White, I remember these events, which took place many years ago and I believe that the gravest imaginable injustice has been done to a small number of people. This applies to successive Governments and not simply to the current Government but I often have wondered the reason this was the case. These people have carried a huge disability and while they had and continue to have so much to offer in life, it has been under remarkably difficult conditions. Members should consider what happened in the United States in respect of smoking where, after many years, the manufacturers eventually were brought to book in some shape or form. In this instance, I understand that everyone has been able to identify this problem clearly and that over the years, there never has been any doubt but that the drug was at fault. Although it was not fit for purpose, for obvious reasons, it got through the net.
The problem is that as the years have passed, the ball has begun to be passed from one to the other and those people who legitimately believed that, as Irish citizens, they should have received a better deal from their State, now find themselves at a stage in life at which this matter again will be forgotten about unless a line is drawn in the sand quickly. This is the serious aspect of today's proceedings. While I did not hear the actual figures, I was informed recently that 32 people are affected. Regardless of whether these are the best or worst of times — everyone hopes times will be somewhat better in the future — it should be possible to make life easier for those affected. At this stage in their lives, there is only one way in which one can so do as unfortunately, one cannot turn back the clock. At this point, the focus should be on making their lives easier as they get older and from a financial point of view and in respect of the various services that should be made available, now is the time to bell the cat. It must be done now and I hope those who have suffered grievously over the years will be looked after adequately, which will not be before time.
I agree with most of the sentiments that have been expressed today, in which there has been a focus on the politics, legislation, legalities and reports. Perhaps Ms Woods might outline what it is like for a person. One always forgets the individual and what life is like. Perhaps she might outline what life was like growing up for someone with this disability. It is important to provide a context because this issue pertains to both the legalities and the individuals concerned, whose lives must have been quite difficult.
I wish to join in the welcome extended to each of the witnesses and to apologise for being unable to attend their presentations. There has just been a further resignation from the Government on the floor of the Dáil Chamber and it was a matter of some import. I was one of the Deputies who participated in the direct challenge to the Taoiseach on 10 February last, at which time he indicated that the State Claims Agency's report would be published before the end of this month, which falls next Sunday. I eagerly await the publication of this report and hope it will reflect positively on the arguments the witnesses have presented both recently and over a considerable time.
I was genuinely disappointed the Taoiseach did not avail of the opportunity to agree to meet the witnesses' representatives. I believe Deputy Connaughton was being fair as an Opposition spokesperson not to exonerate previous Governments but to include all successive Governments going right back to the introduction of the drug as a means of addressing morning sickness from the end of the 1950s until the beginning of the 1960s. A succession of Governments has been responsible and have failed, on behalf of the collective of the Irish people, to offer properly a full apology to everyone concerned. I am not a full member of this committee, although I am a spokesman on health and children in the Dáil Chamber. However, I take this opportunity to urge the committee to use its good offices with the Taoiseach. It is not enough to wait on the consideration by the Minister for Health and Children, Deputy Harney, of the State Claims Agency's report. We need stronger indications, not only of good intent, but of full realisation on the part of all in elected life and the nation as a whole. This can only best be voiced by An Taoiseach agreeing to meet our guests and, on behalf of all concerned, extend a sincere apology as a clear indication of intent on the State's part to meet their needs in order that they are guaranteed a quality of life commensurate with their needs and reasonable expectations.
Deputy Connaughton has set the correct tone. With due respect, I urge that, as a matter of urgency, there be a collective appeal by the committee to the Taoiseach to agree to meet the representatives of the Irish Thalidomide Association.
The delegation will see that members are considerably supportive of its situation. Two obvious issues arise. Deputy O'Hanlon has referred to the State Claims Agency. We understand that a report is expected before the end of the current month. It would be better if the report did not come too quickly and if the State Claims Agency took some time to engage with the association directly. It is regrettable that this sort of engagement has not occurred. It should not take us to make this recommendation.
A couple of weeks ago, I was driving to a meeting in my constituency and was listening to my local radio station when I heard Ms Daly McDonnell being interviewed about her life story. It was riveting radio and Ms Daly McDonnell's life has obviously been an interesting one. The interviewer asked her about the greatest challenge with which she has needed to contend. I was shocked when she replied that the greatest challenge had been dealing with the health services. I believed that, if we were worth our salt as public representatives, we needed to engage with Ms Daly McDonnell and her colleagues to determine what we could do to ensure that the health services function properly and recognise the State's debt to people like her, Mr. Coffey, Dr. O'Carroll and Ms Woods. This is a part of the reason we are discussing this matter. Who wants to lead the response to the points and questions raised? Someone should feel free.
Dr. Austin O’Carroll
I thank the Deputies and Senators for their support for us at this meeting and on the floors of the Houses. We appreciate it. I will only address one issue, as I do not want to hog the floor on every issue. For me, the key matter is that of the State Claims Agency. Deputy O'Hanlon stated that it would be wrong to claim that the State would need to accept responsibility for every medication that went before the Irish Medicines Board and with which there was something wrong. However, the thalidomide case is different, as it is well recognised that sufficient legislation was not in place in Ireland while it was elsewhere. This is the difference between now and then in terms of something going before the Irish Medicines Board.
The State became involved when it persuaded our parents to make an unjust settlement. This is the second key reason it is different than another medication that went before the Irish Medicines Board.
We have another key point. We sent approximately nine e-mails to the State Claims Agency before we got a cursory response to the effect that it would get back to us, but it never did. We have engaged with the State and met the Minister twice. We met her for the first time more than two years ago. After no action was taken, we met her again a year later. The State Claims Agency asked us to visit it to say "Hello", but there were no substantive negotiations.
This is unprecedented. Every other group has been involved in the negotiations of the package dealing with its issues. The State Claims Agency is taking a narrow remit of redress that does not take into account loss of earnings and loss of amenity. Where other groups were concerned, such as those involved in the hepatitis C issue to which Deputy Lynch referred and which is similar to our case, the agency took into account the principals of compensation, which included loss of earnings and loss of amenity. We seem to be getting a second rate package, which is why we do not look forward to the agency's report with optimism. We need to be involved and we would appreciate the committee's support in recognising that it cannot be a cheap package. It must be full, honourable and just compensation for our members.
Does anyone wish to speak about the range of questions posed?
Ms Carmel Daly McDonnell
We were asked whether we had been in contact with the HSE. The answer is "Yes". Unfortunately, it stated that it did not know about any special needs services for thalidomide survivors and had no remit for same. The services do not work anyway. For example, a tyre was missing from my wheelchair, but it took five weeks for the occupational therapist just to come near me to see the wheel. It took a further three weeks for the company to come out and assess the chair to ensure that the wheel was the issue. The occupational therapist returned to talk me through the process. It took a further six weeks for the wheel to arrive because the HSE had not paid for the wheel. Until the wheel was paid for, I could not receive it.
This is a constant situation in respect of every item we need. When we approached the HSE about it, it told us that its hands were tied and that it had received no word on the matter. We told it that we had been in discussions with the Department of Health and Children and that the Department had always looked after our case, but the HSE told us that it would not be so with it.
Ms Woods was invited by Deputy Chris Andrews to tell the committee about her life experiences.
Ms Maggie Woods
I was born into a family in Killybegs in County Donegal. I am 3 ft. 8 in. tall. Obviously, I have not always been this height. So that members can visualise it, I was shorter than the lower table. I did not walk until I was four years old. At the age of seven years, it was suggested that I attend a special school in County Westmeath. I was taken from my family and spent 11 years at that school, where I endured cruelty under the Sisters of Charity.
Thalidomide has taken my limbs, but it also took my childhood. There was no space for fun. We were in an institution where everyone had a disability. The impact on my life has been horrendous. Since I was sheltered from stares and comments, I did not need to deal with them until I was a young adult, when I left the institute at 19 years of age. I needed to cope with them then. I have two children who are 21 and 19 years of age. They have endured comments from their schoolmates and been asked whether I was their real mother to the effect that surely they were adopted and I could not be their mother.
These are the real issues surrounding thalidomide. The damage is not only physical, but psychological. When the Department of Health negotiated a compensation package in 1975, none of these issues was taken into account. That is still the case.
I must work full time to support my children. I have recently had to downsize my accommodation because the house I was in was too big. For obvious reasons, it was impossible to maintain. I have been living in that apartment since July. I have been in contact with the HSE in Galway to get environmental controls on it. An assessment was carried out and I was told no funding was available. I am sleeping in that apartment at night, unable to lock the door. That is the reality.
Someone asked about medical cards. We receive medical cards. I am unable to brush my teeth properly to remove plaque and a few times a year I am entitled to dental care. If it goes beyond what I need, questions are asked. These are the effects of a drug that has created these issues for me. I apologise for getting upset.
Ms Woods is quite entitled to get upset and I thank her for sharing those experiences with us. She is very brave. Does Mr. Coffey wish to comment?
Mr. Michael Coffey
We would like the medicines board to be reinstated so there is a body we can contact if we have any complaints or we require funds. There should be a body we can go to that will listen and will understand our predicaments. I was put into one of the same schools as Ms Woods, an industrial school. I came through the same system. I had some redress on that in the latter years through the redress board. The industrial schools were not fit places for disabled people like me. The disability affected my confidence later in life and it was only when I got married that I started to get some self-esteem in my life. I got more confident when my kids came along. I thank the committee for its time.
Dr. Austin O’Carroll
The Irish Thalidomide Association wants the same as the people infected by blood products. They have legally enshrined guaranteed rights to health care. We do not want to be in negotiation with the HSE. We cannot provide services; we are a representative organisation, not a service providing organisation. We would like the rights to health care to be legally enshrined in legislation.
I thank the witnesses for their presentation and it has been a privilege to hear from them. They challenge us in the role we have on this committee and I commit the committee to doing its utmost to support the witnesses in the case in point. I look forward to meeting them again in the future.