‘You can’t cut corners in muscular dystrophy care’

The government can no longer afford to cut corners in care for people with muscular dystrophy, Foyle MP Mark Durkan has said.

Mr Durkan made the comments after it was revealed that funding for Northern Ireland’s sole muscular dystrophy care adviser is committed only until the end of next month.

The local MP said it was high time that better services, planning and support were put in place for the 2,000 people who suffer from muscular disease in the North.

He was speaking during this week’s Westminster Hall debate on neuromuscular care.

“Unfortunately, when a child is diagnosed with muscular dystrophy, parents often have to navigate systems and negotiate between services as though they were the first to find themselves in that situation.

“Because people know the good work of the Muscular Dystrophy Campaign and know that it is a recognised disease, they assume that care services are in place and that the system kicks in and knows what to do, how to pass people on and how to connect services.

“They assume that key workers exist to ensure that needs are met, whether that involves a disabled facilities grant for adapting housing, or assistance deciding which school environment will be most conducive or accessible. Families need support, and they expect the system to provide it.

“However, for people with muscular dystrophy that does not always happen.”

He added that fears were growing that budget squeezes could lead to a drastic reduction in already under funded services for people with Muscular Dystrophy.

“Not only are things not as they should be, but the existing service and the commitments that have been made may well disappear,” he said.

He added: “I am calling for better services, planning and support ofr all affected.”

muscular disease, and their unplanned emergency admissions cost at least £2.25 million a year. Cutting corners in such areas in the name of efficiency savings is wrong, and some of the cuts and squeezes taking place are counter-efficient. Better and more appropriate and available services would lead to savings.