making muscle wasting history

All South Down MLAs were lobbied and agreed to give their support to the proposal from Action Duchenne that a Centre of Excellence for treatment of patients with Duchenne Muscular Dystrophy should be established in Belfast.

Because the standards of care consultations for Duchenne are not available in Belfast at present, boys are having to travel to Newcastle-on-Tyne for treatment and monitoring.

Mr David Galloway, Director of Secondary Care – speaking on behalf of the Health Minister acknowledged that improvements were needed urgently and that funds had been made available for a fourth specialist. They would strive, he stated, to bring facilities and quality of care in Belfast as close as possible to those achieved in Centres of Excellence in England.

It was pointed out from the floor that the estimate for boys with Duchenne in Northern Ireland was only about 50 and that regular monitoring and applying the new standards should be well within the capabilities of the specialist in Belfast.

Parents present were unanimous in endorsing Dr Janet Watters to be their spokesperson and representative in any dealings with the Health Minister with regard to improvements in treatments in Belfast and stated that her knowledge and experience in this regard would be invaluable to the decision makers.

Mr Galloway agreed to take this on board. Action Duchenne and the parents are confident that with the support of MLAs and the Minister that the life-span and the quality of life of Duchenne boys will be dramatically improved in the near future.

IT IS TIME TO PUT AN END TO THE POSTCODE LOTTERY