John Moloney (Laois-Offaly, Fianna Fail)

I thank the Leas-Cheann Comhairle. I do not want to just go through the motion of thanking Deputies because I recognise the concerns of Deputies on both sides of the House. I thank those who tabled the motion.

To pick up on Deputy Jan O'Sullivan's point, I recognise the involvement of the Joint Committee on Health and Children in this area. Seldom have I seen motions come before the House from a committee, but this one originated in the Joint Committee on Health and Children.

I have one small issue. I feel the demeanour, concerns and sincerity of the House and I could not destroy that. However, I cannot accept Deputy Ó Caoláin's observation that my counter-motion is self-congratulatory. It is far from it. I do not take solace from the fact we had to deal with this issue here today. The counter-motion is a response or clarification of where the Government stands, and is no more than that.

I want to deal with the heart of the issue, rather than waffling on. There is no contest regarding the issue of supporting research in this area. Research has been and will continue to be carried out. It is a pity we should divide, but I understand Members need to bring some clarity to this issue. I am not just responding to this motion. This issue, like all demands for disability and financial support, is ongoing.

Last November the issue became clear to me and the Tánaiste asked me to talk about meeting with the group and I intend, further to this debate, to meet with members of that group. I accept that request. I am not meeting them for the sake of it. That is not the position. It is a meeting to bring clarity.

Deputy McHugh talked about international care standards. I am somewhat confused. Are we also talking about international research standards? I believed we bought into and accepted the fact that we must have international research standards. Forgive me if it appears I am trying to distance the Department's position from this. Far from it. Unless we buy in, support and grant aid to international research standards, clearly we could not carry out research in this country alone given the number of people affected, as it would not bring about the productive results we require. We must take that approach in the Department. We have done it and we will continue to do so.

I wish to bring some clarity to the issue. Reference was made to the register and I would prefer to develop that issue. I am not asking the Opposition to pull back from putting the motion to a vote, far from it, but after today the matter will still be ongoing. The specific point I was asked about was further funding for research. I will continue to fund research. I made the point in my opening statement that the call goes out on a regular basis from the research board. I understand the next date when independent experts will decide on what research projects to support is in June. I hope the specific research project we are discussing will be prioritised.

In order to be helpful but without interfering in that independent process, I am prepared to meet with the representatives of Duchenne Ireland as soon as possible in the coming days. I wish to clarify whether the group's concern is international care or international research. I reaffirm the Government's commitment to supporting research. I could not have said in my prepared script and opening remarks that we are all about research if we are confining the research to this country alone. We have to go the necessary distance to support this cause.

I accept the points made by Deputy Breen in particular. I have no direct family member who is affected but, like other Members of the House I am aware of families that are affected. There are many demands for further funding in the disability area but I see the necessity of funding for this disease from the points made by Members, including Deputy Blaney and the Tánaiste, whom I met some months ago. Research has indicated that the disease can be ameliorated through further research and clinical trials. Reference was made to the register. Are we talking about people registering to go forward for clinical trials? If that is the case, it must be done on a voluntary basis and safeguards and protocols must be built into such a system.

I accept the point that there is little time for those who suffer, but it is essential that we bring clarity to the issues raised, namely the types of research, the involvement of clinical trials, and what we are being asked to do. I do not say that in an effort to prevent Members dividing the House but I cannot give a commitment until I work out what clinical trials are involved. The fact that we did not support clinical trials funding last year may have given rise to the notion that we are ceasing to fund research. I assure everybody of our continued commitment in that regard.

Many other points were raised and I would like to have had the time to address them. It is important to talk about the cost of disability payments. Perhaps we can discuss the issue further on another day but I am not sure when that would take place. It is important to bring clarity on the cost of disability payments.

I was taken by Deputy McHugh's reference to the case of Darren McDonagh. Although it is not much help, my sympathies go out to him. I accept it is poor practice for a child to have to travel from Donegal. The Minister for Health and Children, Deputy Harney, has been stressing for some time the importance of standards of hospital care. I would not even pretend to offer an excuse for anybody having to withstand what Darren did, especially in the year of disability.

I will try to bring some clarity to my summary remarks. First, I recognise the huge contribution of Duchenne Ireland, which to date has raised €300,000. I accept that the group is not prepared to stand aside and ask someone else to do the business. In response to all the Members who have spoken today, it is clear that we must all be compassionate but demonstrate that by committing and confirming our involvement in funding research. That is why I have a difficulty with dividing the House in the context of our previous funding and our commitment to further funding.

I might need time to clarify the ongoing proposals for funding, whether it is for clinical research or in terms of people volunteering for research. I reaffirm my commitment to research. The Government's motion points to the mechanisms that are in place to support research here and abroad and the supports it provides to provide health and personal services, in particular to people with a disability. It is important to stress that. The Government shares the concerns of Members.

I wish to put on record a point on research. I accept Deputy McHugh is concerned about research into the disease. Systems are in place to support charities to develop research programmes relating in particular to rare diseases. Deputy Connaughton made the point that this disease falls into that category. Those mechanisms are operated through the Health Research Board, HRB, which is the statutory body for health research. The scheme to support medical charities recognises and accommodates the fact that these research projects can be led predominantly outside of Ireland. I cannot stress that point enough. We should not be confining our research to this country. International best practice must become part of the strategy. We cannot do that unless we are part of international research in the first instance.

To date, the Health Research Board, has supported Muscular Dystrophy Ireland through co-funding two research projects which advance the case for a reversal of the devastating effects of muscular dystrophy. A new round of proposals for research is under way. The HRB has supported Muscular Dystrophy Ireland and recently met and advised it on the development of its research proposals. I wish to further elaborate on what are the specific research proposals. The process of developing, considering, recommending, approving and funding new proposals for research should be completed within a couple of months. With all sincerity, this information is not merely a response to the motion, the historical facts are available from the HRB and the Department of Health and Children that demonstrate their ongoing commitment.

I will come to a conclusion as I am running out of time. I hope that Muscular Dystrophy Ireland's proposals will receive a favourable assessment and every assistance will be given to it. I will do all that I can, in conjunction with my officials, to support, promote and, I hope, get the go-ahead from the independent research board.

I thank all the Deputies who contributed to the debate. More important, I thank all those who travelled long distances to be present. I hope they recognise that it is not just a political response that we are giving, it is a compassionate response based on the need to continue our research.

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