John Moloney (Laois-Offaly, Fianna Fail)

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.

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