James Reilly (Dublin North, Fine Gael)

In the short time afforded to me, it will not be possible to touch on all the issues that arise concerning muscular dystrophy and, in particular, Duchenne muscular dystrophy. Suffice it to say, as the Minister of State has pointed out, that these boys have a very short life span. It is a matter of great trauma for their families and all those who are involved with them. Ten boys are born every year with this condition. It is very difficult once the boys are wheelchair bound for them to travel. It is particularly onerous for them to have to travel abroad for research purposes. We need an Irish arm of these trials so the Government should make the money available to do so. We must get around whatever issues there are concerning the difficulties with funding trials that do not necessarily originate here.

The most important message that needs to emanate from this debate is that people with Duchenne muscular dystrophy have multiple needs. From their point of view, the earlier intervention takes place the better. It is really scandalous that we have so few neurologists in this country, generally, and that the two neurological service units available for people with muscular dystrophy are both in Dublin, at Beaumont and Temple Street. Therefore, everybody concerned must travel to Dublin from Donegal, Cork and elsewhere to avail of these services.

We do not have enough genetic testing facilities or sufficient respiratory cardiac care monitoring for the children, which could make a huge difference to their quality of life. If they do not have a medical card, they must pay the first €90 per month towards the cost of breathing machines which aid ventilation. That represents further hardship for them amounting to an annual sum of €1,080.

Some 97 members of Muscular Dystrophy Ireland receive no physiotherapy nationwide and there are 40 who cannot access an occupational therapist. That number has increased from 20 in 2008. The last paragraph of the Minister of State's speech rings a little hollow when one considers the facts of the matter. It states:

This Government will continue to invest in and lead in the reform of a health service that works towards improving access to a high quality health and personal social service. We will support the development and delivery of quality services right across the country.

What Muscular Dystrophy Ireland would like to see is more funding for the multidisciplinary team at Beaumont Hospital to support the neurologist there; the paediatric neurology team to be made permanent and boosted; more consultant geneticists; funding for the respiratory team at the Children's University Hospital, Temple Street and funding for respiratory and cardiac services, as I mentioned. Will the Minister of State support the recommendation of Muscular Dystrophy Ireland and the Disability Federation of Ireland that the Government introduce a cost of disability payment of €40 per week for people with disabilities in receipt of means tested social welfare payments?

It is recognised nationally and internationally that people with disabilities incur many extra but ordinary costs such as food, heating and clothing as a result of their disability. This matter was identified by the Commission on the Status of People with Disabilities and the National Economic and Social Forum and they both recommended the payment. This is something real and tangible that could arise from this debate.

Research on exon skipping needs to be supported to ensure that it runs to its conclusion and, potentially, to the development of new therapy. Above all, I implore the Minister of State to ensure we give hope to our citizens who suffer with this illness and their families that there could be light at the end of the tunnel and that we are prepared to invest in their future by investing in this research.

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