Lives ‘will be lost and families torn apart’ if Northern Ireland loses muscle disease advisor
A woman with a life-threatening muscle disease has warned lives will be lost if Northern Ireland loses its only specialist care advisor as the NHS struggles to save money.
Northern Ireland will become the only part of the UK without a specialist care advisor for people with degenerative muscle conditions.
Funding runs out for the post at the end of March and so far health bosses have refused to say whether more money will be made available to guarantee the future of the position, which costs the health service just £50,000 a year.
Michaela Hollywood (20) has Spinal Muscular Atrophy and said the specialist care advisor has provided support and assistance during some of the most difficult periods of her life.
“My sister, Martina, had the same condition as me and when she died 14 years ago, the care advisor was the first person at our door,” she explained.
“I can’t remember a time when they weren’t around to help me and I can’t imagine not having a care advisor there.
“There are families with someone with muscle conditions and they are only together because of the support they get from the care advisor. Taking them away will mean families are torn apart.
“Lives will be lost and healthcare for people with muscle conditions in Northern Ireland will go down dramatically.
“Someone with my condition goes through a lot of surgery. I had an operation on my spine when I was 11 and the decision to have the surgery wasn’t taken lightly but the care advisor was there to help me reach a decision.
“They are experts in muscle conditions and help to advise the doctors. They are there to help get the technology we need.
“I am now on a machine which does my breathing for me overnight, otherwise I would die. Martina was older than me and didn’t have the benefit of the technology that I have.
“My care advisor, Pauline, knows muscle disease inside out and finds out everything there is to improve my health — new technology, new treatments and new medicines.
“I regularly have chest infections so she researched equipment and found a machine to help me cough, even getting hold of one for me to try.
“That was in January last year and I haven’t had a chest infection since. That kind of help keeps people out of hospital and saves NHS funds.”
There are nearly 2,000 patients with muscle disease in Northern Ireland and just one specialist care advisor, meaning the health service is paying just £15 for each person with a muscular condition to ensure they get vital support and assistance.
With time running out, charity Muscular Dystrophy Campaign has called for the Health & Social Care Board to state whether the post will remain after March.