Dystrophy Patient Care 'Below Standard'

People suffering from a progressive disorder that weakens the muscles are being ill served by the NHS.

The SDLP Leader Mark Durkan (pictured) has said that the findings of a new All-Party Parliamentary Group report on muscular dystrophy highlights that more people with muscle-wasting disorders in Northern Ireland are dying earlier than their counterparts elsewhere.

The Foyle MP said that the new report by Lord Walton has said services are often so below standard that patients' well-being and survival are compromised,

Mr Durkan, who has met campaigners at Westminster and earlier this year at Stormont to lobby for improved specialist services for people who suffer from the condition, said: "People are going without therapy that has been tried elsewhere.

"This report led by Lord Walton shows that some of the treatments are helping to extend lives. If people are going without those in Northern Ireland then people here are dying earlier than their counterparts elsewhere.

"Their allegation isn't just in respect of Northern Ireland but generally across the UK that simply not enough is being done in terms of resources and commitment and coordination," he said today.

"It's not a fault of professionals in the medical system – who in many cases are going out of their way to do a lot in terms of services – however they are not being backed up by the system in making sure that the resources and commitment and priority is there," the MP and MLA continued.

"We have the situation where people from Northern Ireland are using services in London and Newcastle because resources aren't being put in to provide services here.

"There needs to be more of an effort in terms of multidisciplinary commitments. Indeed, people do not just have one form of the condition – different treatments are needed by different people, different treatments can help and different treatments are being tried and explored in other areas," he said.

"This UK-wide report is a wake-up call to everyone.

"It really is telling us that while there are many positive things that the NHS does, it needs commitment and resources and prioritisation in terms of services for people who suffer from muscular dystrophy.

"We need our Department of Health to do that, led by the Minister," he said, noting he is sure that Michael McGimpsey will receive this report and will "reflect very heavily on the observations that are in it, and will learn the lessons of the commitments that are being made elsewhere".

However, a spokesman for the Department of Health in Northern Ireland said a review was under way and that the recommendations of the new report would be fully considered.

"In addition, the Department has committed to producing a Physical and Sensory Disability Strategy, which is expected to be issued for consultation by the end of this year," he said.

(BMcC/GK)