Andrew Doyle (Wicklow, Fine Gael)
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I wish to share two minutes of my time with Deputy Joe McHugh. The need for funding for muscular dystrophy has been brought to my attention by a family who have two young sons, aged four and seven, with Duchenne muscular dystrophy. After my initial contact with the family, all Oireachtas Members attended an information session on 9 April given by the representative association, Muscular Dystrophy Ireland, MDI, where all Members expressed support for and empathy with the families of the sufferers of this dreadful disease. Prior to this meeting I had written to and received a response from Deputy Jimmy Devins, then the Minister of State with responsibility for disability and mental health. The Minister of State said, "It was very positive that Muscular Dystrophy Ireland has secured access for Irish children to the Duchenne muscular dystrophy registry in the UK, so that they can be considered for inclusion in the first systemic trial of this treatment." However, the Minister of State went on to say there was no mechanism or budget for the Irish Government to fund UK health research, and recommended the matter be taken up by the Health Research Board, HRB. He suggested that Muscular Dystrophy Ireland applied for joint funding but he admitted the organisation would have to compete with all other proposals and requests put for funding. MDI made contact with the HRB, only to be told this year's funding was committed. It received €50,000 through another channel within the HRB but it falls far short of the €1.5 million required.

My aim in proposing this enabling legislation is to allow funding to cover research trials that are not taking place or available in Ireland for sufferers of such illnesses as muscular dystrophy. The reasons the research does not take place may vary but inevitably it is because there are not enough people in the core group of sufferers, some 150 families, in this country to justify it. Time is not on the side of these people. We can directly fund operations in Great Ormond Street Hospital or in America and, given there was cross-party agreement on this issue, I ask that this funding be put in place.

Joe McHugh (Donegal North East, Fine Gael)
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I record my appreciation to Deputy Doyle for raising this matter. It took almost a week and a half for it to be accepted and I am delighted it has. His persistence highlights the sense of urgency and immediacy for the families concerned. Numbers form much of the basis for arguing which groups require financing but 150 families — a number which is growing — are affected by Duchenne muscular dystrophy. In the Minister of State's previous role as chairman of a health board he would have been familiar with the issue. Representations would have been made and there was a presentation to the Oireachtas joint committee on the issue. In the meantime, the 18-year old son of one of the families which was lobbying approximately a year ago has passed away. Families whose sons are aged eight, nine or ten are looking at a timeframe of maybe seven or eight years before they have to face a similar situation.

I received a response to a parliamentary question this week indicating this Irish Government would not fund British research. I know policy is policy and we must respect that. At the same time we must be imaginative and there are other ways to ring-fence funding for these conditions. The Government has indicated it would consider matching funding but the families do not have upwards of €750,000 to match the funding to achieve a total of €1.5 million. Two families in my constituency have embarked on a crusade and raised upwards of €70,000 on their own from the community. Their consciences would not be clear if the children pass away and they have not done their best. They have lobbied politicians and are now out in the community and have raised €70,000 in four weeks. We must assist them through transnational research. We refer to co-operation, integration and working together. It is not good enough for me to get a one line answer from the HSE, stating that the HSE does not fund British research, every time I table a question. There is a transnational opportunity and a way around this.

We cannot have families raising €70,000 off their own bat, with no assistance. Their backs are against the wall and they know the children will die when they reach 18 years of age unless there is some intervention. I ask the Minister of State for his indulgence.

John Moloney (Laois-Offaly, Fianna Fail)
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I recognise the concerns of Deputies Doyle and McHugh and that a number of presentations were made to the Joint Committee on Health and Children. I sympathise with the Deputies in respect of the one line response. I will put the issue of transnational research to the HSE.

I am pleased to take this opportunity to address the issue raised by the Deputies. I wish to assure the Deputies that the Government is aware of the situation of families with children suffering from Duchenne muscular dystrophy. While there are no guarantees with trialling new approaches to muscular dystrophy, I can understand the hopes of families for a medical advancement in this field.

It is very positive that Muscular Dystrophy Ireland has secured access for Irish children to the Duchenne muscular dystrophy registry in the UK, so that they can be considered for inclusion in the first systemic trial of this treatment. The Health Research Board comes under the aegis of the Department of Health and Children and is the lead agency in Ireland supporting and funding health research. It provides funding, maintains health information systems and conducts research linked to national health priorities. Researchers must be based in Ireland to qualify for funding under the Health Research Board's various schemes. I have been advised that the funding of health research being carried out in the UK is not appropriate to the Good Friday Agreement, North-South Ministerial Council or the INTERREG programme. Accordingly there is no mechanism for Irish Government funding of UK health research.

I understand that Muscular Dystrophy Ireland held the first information day on advances in the care of Duchenne muscular dystrophy for families and doctors earlier this year. The Government was pleased to be able to support Muscular Dystrophy Ireland by providing more than €9,000 under the national lottery towards the costs associated with the information day.

Therapy services for adults with muscular dystrophy are generally delivered through primary care teams or community therapy services. Due to relatively small numbers, staff are not dedicated to work solely with clients with muscular dystrophy. The HSE advises me that the level of therapy staff employed in primary and continuing community care settings has increased significantly since the formation of the HSE. In December 2007 there were 638 physiotherapy staff and 789 occupational therapy staff. At April 2008, those staff numbers have increased to 670 and 796, respectively. Therapy services for children with muscular dystrophy can be delivered through specialist disability providers or through primary and community care services. Additional resources have been allocated to increase the level of multidisciplinary supports available to children with disabilities in the context of the implementation of the Disability Act and the Education for Persons with Special Educational Needs Act.

At present, the Disability Act 2005 gives children with disabilities under five years of age the right to an assessment of their health needs and a service statement outlining the services that will be provided. In addition, the HSE is required to report annually to the Minister on levels of unmet, assessed needs. The key HSE priorities for the future in developing primary care teams, home care packages and implementation of the Disability Act and the Education for Persons with Special Educational Needs Act will lead to the ongoing development in multidisciplinary supports, which will benefit both children and adults with muscular dystrophy.

In addition to those services, the HSE states that more than €2 million has been made available to date in 2008 to Muscular Dystrophy Ireland, a support organisation for individuals with muscular dystrophy and their families. I wish to emphasise the Government's commitment to providing a high quality service to all people with a disability. Having recently been appointed Minister of State with responsibility for equality, disability and mental health, it is my objective to move the disability agenda to a level which compares with the best in the world. We will do so in partnership with all stakeholders.

Andrew Doyle (Wicklow, Fine Gael)
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What about Duchenne muscular dystrophy?

Joe McHugh (Donegal North East, Fine Gael)
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Duchenne muscular dystrophy was not mentioned.