Facilities for muscular disorder urged

INCREASED FACILITIES for those suffering from muscular dystrophy were sought by Fine Gael health spokesman Dr James Reilly.

He said it was scandalous that there were so few neurologists in the State, generally, and that the two neurological service units available for people with the illness were at Beaumont and Temple Street, in Dublin. “Therefore, everybody concerned must travel to Dublin from Donegal, Cork and elsewhere to avail of these services.”

He said: “We do not have enough genetic testing facilities or sufficient respirator 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 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.”

Dr Reilly said 10 boys were born annually with the condition. It was very difficult once the boys were wheelchair-bound for them to travel, and it was particularly onerous for them to go abroad for research purposes.

Labour spokeswoman Jan O'Sullivansaid it was welcome that certain progress had been made. It was a very severe and progressive muscle-wasting disease and devastating news when it came to the families concerned.

“The only hope is that we can participate in international trials to make whatever progress can be made in co-operation with people in a variety of countries throughout the world,” she said.

Sinn Féin's Caoimhghín Ó Caoláinsaid people affected by the condition received genetic testing and counselling from the National Centre for Medical Genetics. However, it was still not funded to provide a service throughout the State.

Minister of State for Health John Moloneysaid the Government remained committed to the national disability strategy and doing all that it possibly could to give people with disabilities the services and supports they needed and deserved.

“The needs of people with a disability, such as muscular dystrophy, was the motivation for the development of the national disability strategy,” he said.

A Government motion, approving its policy initiatives, was passed by 64 votes to 58.