Adjournment Debate. - Treatment of Rare Disease.

Tuesday, 11 June 1985

Dáil Eireann Debate
Vol. 359 No. 6

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An Ceann Comhairle: Information on Thomas J. Fitzpatrick  Zoom on Thomas J. Fitzpatrick  Deputy Denis Foley has been given permission to raise on the Adjournment the special funding by the Department of Health for a patient suffering from a rare disease who has now been referred to the Mayo Clinic as the condition cannot be healed here. The Deputy has 20 minutes.

Mr. Foley: Information on Denis Foley  Zoom on Denis Foley  First, I wish to thank you sincerely, Sir, for allowing me to raise this very important issue.

An Ceann Comhairle: Information on Thomas J. Fitzpatrick  Zoom on Thomas J. Fitzpatrick  Before the Deputy commences I would rather I had an opportunity of knowing what is at stake. Does the Deputy propose to mention the name of the patient?

Mr. Foley: Information on Denis Foley  Zoom on Denis Foley  I do, yes.

[1142]An Ceann Comhairle: Information on Thomas J. Fitzpatrick  Zoom on Thomas J. Fitzpatrick  Well, it is a matter for the Deputy himself. It is a rather sensitive matter.

Mr. Foley: Information on Denis Foley  Zoom on Denis Foley  Áine Fitzgerald is a 21 year old Tralee girl suffering from a rare disease which cannot be treated in this country. Doctors in Dublin have done all they can for this girl and they have now recommended that she go to the Mayo Clinic in the United States for further assessment. But her parents are faced with the task of raising £16,500 before air tickets are purchased as the Mayo Clinic have demanded this deposit before they start to assess her. The parents have been advised that as a result of the further assessment, if surgery is necessary the cost may be as high as £100,000. No way can the family meet this type of expense or be expected to do so.

The rare condition which Áine suffers from and which has never been known in this country before, is characterised by obstructions in various arteries of the body. Already she has had three major operations on her right leg. Her trip to the Mayo Clinic has been made more urgent by the fact that she now believes her good leg is being affected.

If the disease is active Áine's biggest fear is that the blood supply to the vital organs will be cut off. The effects of the disease are that Áine cannot walk more than 200 yards. She also has problems with her left arm and last week Dr. Patrick English of Tralee told her he could not find a pulse on her left leg. Áine Fitzgerald is disappointed with the response from the Southern Health Board and the Department, in particular in reference to the Minister's promise last year that no citizen of the State would suffer from inadequate funding if their condition could not be treated in this country.

In July 1984 the Department of Health placed advertisements in the national press regarding Colin McStay, the liver transplant patient who had to travel to Pittsburg, which stated that it is the policy of the Department of Health that all applications for assistance towards the cost of operations abroad where such [1143] operations cannot be done in Ireland, are examined on their individual and medical merits, that entitlement to medical services is a basic right of everybody and should not be dependent in any way on appeals to the public, however generous the outcome. After discussions between Professor Risteárd Mulcahy, who treated Áine, and the Southern Health Board's consultants it did not appear that there was a reasonable prospect of therapeutic benefit from a visit to the Mayo Clinic. In view of this it was decided that the health board could not give any financial assistance towards the proposal.

The view of the Southern Health Board consultants is disputed by the medical people dealing with Áine, in particular Professor Risteárd Mulcahy who has been involved in Áine's case since 1983. He has stated that all that can be done in this country has been done. He would strongly recommend that Áine Fitzgerald should be referred to the Mayo Clinic for evaluation by their experts, for any special investigation which may be necessary and which may not be available to us here, and for any special treatment which may be indicated following such investigations, whether such treatment be surgical or medical. He continued to advise that her referral to the Mayo Clinic should be arranged as soon as possible to avoid the risk of further obstructions occurring. Professor Mulcahy made those remarks last April.

Áine Fitzgerald left for America last Friday evening with her parents to fight for her life. A trust fund has been set up in Tralee and throughout Kerry. Already the public are beginning to rally around this very worthy cause. This is a very emotional issue in Tralee and throughout Kerry. I appeal to the Minister for Health to respond by way of financial support to Áine and her family, so removing some of the tremendous pressures on the family at present. Áine speaks out about her illness and states that her one ambition is to live.

Minister for Health (Mr. B. Desmond): Information on Barry Desmond  Zoom on Barry Desmond  I have listened with concern to Deputy [1144] Foley. I should like to deal with the issue in two parts and first, the general procedure in such cases so that the House will be very clearly aware of the procedure followed in the Department of Health and by me in such cases since I became Minister for Health.

The normal procedure for processing cases such as that of the young woman concerned is that, in the first instance, an application is made direct to the relevant health board including, with the application, medical and surgical evidence that the treatment is required for the patient. The health board's agreement is necessary before a patient can be sent outside the country. If the cost of the treatment abroad is in excess of £1,000 the approval of the Department of Health is required to the health board accepting liability for the cost in excess of £1,000. I might add — this is not germane to this case but is relevant to the overall procedures — that the amount of £1,000 is currently under review in consultation with the CEOs of the health boards in the light of the considerable increase in the number of cases submitted in the past two years or so. But the amount in question does not arise in relation to the young woman's case because there is no recommendation whatsoever from the Southern Health Board.

I have two observations to make on the specific case in question. As Deputy Foley Correctly remarked, it is a sensitive issue, a highly personal issue and I think the House would wish it to be treated as-such. Having been raised on the Adjournment here, the person having been named, and so on, I want to put two very definite facts on the record. Deputy Foley said that Áine Fitzgerald was recommended by Dublin doctors for treatment in the Mayo Clinic. I assure the Deputy that that is not so.

Deputy Foley remarked that the views of the Southern Health Board consultant were disputed by a professor of cardiology, a consultant in Dublin, and the Deputy named the consultant. I do not propose to do that. That equally is not so. The views of the Southern Health Board's consultants are not now disputed [1145] by the eminent consultant cardiologist in question. I spoke to the consultant in question and the Tánaiste, in my presence, spoke to the consultant and we were assured that he is not making any such recommendation at this stage that the patient should be sent to the US for therapeutic treatment. I am very much aware of the details of the case. The Tánaiste has been in constant touch with me about the matter, as well, because it involves a local constituent, and a family well known to him.

I am extremely sympathetic towards the provision of financial assistance to people who require medical treatment abroad where such treatment cannot be provided here and where it can be demonstrated to a reasonable degree that the treatment is both necessary and suitable. The surgical facts of the case have been considered in considerable detail both by the consultant medical and surgical staff advisers to the Southern Health Board to whom the application for assistance was made initially and also by the chief medical officer of the health board. On the basis of comprehensive medical advice I am satisfied that it does not appear that the young woman concerned could benefit therapeutically by being referred to the Mayo Clinic. This is also the conclusion of the Southern Health Board. In these circumstances I could not sanction financial assistance. As I have already said, if there are any new reasonable substantial medical facts available I will be only too happy to have the case examined immediately. The chief medical officer of my Department, in the light of such information being forthcoming, would be asked by me to review his recommendation that public funds should not be spent on sending this young woman to the US.

In relation to the general issue there is not a shortage of money in my Department for dealing with cases of this nature. When the original case, the Colin McStay case came up, I made it perfectly clear at [1146] the time that it is not necessary for any family or any person to have to resort to public appeals or special requests for medical, surgical or other treatment abroad which is not available in this country. Once we get advice from a health board we are prepared to help. Advice in this case was based on the best consultant opinion. A number of eminent consultants were involved, a much larger number than is usually involved in a case. I would urge on parents that when such a situation develops they should come to the health board in the first instance and we can without delay facilitate people as we do every month of the year without boasting and the attendant emotional involvement. The funds are available and we automatically authorise health boards, provided an authoritative recommendation is made, to apply for the funds. I regret that I should have to put this on public record.

I offer every support to the woman concerned and hope that she will become well. In the event of my Department receiving further information of a medical or surgical nature of benefit to the patient, I can assure the Deputy, the Tánaiste and other colleagues, that I will immediately take action on the matter.

Mr. Foley: Information on Denis Foley  Zoom on Denis Foley  I would like to say ——

An Ceann Comhairle: Information on Thomas J. Fitzpatrick  Zoom on Thomas J. Fitzpatrick  I am sorry, Deputy, you cannot make another speech. The Deputy may ask a question.

Mr. Foley: Information on Denis Foley  Zoom on Denis Foley  Is it a fact that it was not recommended that this girl should go to the Mayo Clinic by her own doctors? Do I take it that the Minister has said that there was not a recommendation from her own consultants?

Mr. B. Desmond: Information on Barry Desmond  Zoom on Barry Desmond  There was no recommendation to me by her consultants.

The Dáil adjourned at 8.50 p.m. until 10.30 a.m. on Wednesday, 12 June 1985.

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