Lives are being put at risk because of stark gaps in specialist care for people in Northern Ireland suffering devastating muscle conditions, a new report has warned.
A nine-month investigation into services for people with muscular dystrophy and other similar conditions has found that patients here are waiting months for diagnosis and vital appointments.
Some parents even reported being told over the telephone that their child is terminally ill, while young people face waits of over a year to have wheelchairs and other equipment repaired.
The report, published at Stormont on Tuesday, points to the latest shocking indictment of healthcare in Northern Ireland — and highlights once again that health service treatment here lags far behind the rest of the UK.
It comes just weeks after a row over access to life-enhancing cancer drugs that are being denied to patients here while they are available in the rest of the UK.
Gaps in care were also highlighted when one of the UK’s most senior doctors hit out at waiting times for hospital appointments and operations in Northern Ireland.
The McCollum Report launched on Tuesday is backed by the Muscular Dystrophy Campaign and reveals in harrowing detail the misery faced by the thousands of people affected by muscular dystrophy and other similar conditions. Specialist care for muscular conditions has improved dramatically in recent years across England, Scotland and Wales, with life expectancy increasing by up to 10 years.
But patients and health experts here say that lack of investment has left Northern Ireland far behind.
The report has highlighted that the whole of Northern Ireland is served by just one specialist care adviser — a role that has been left empty for six months.
However, England has funding for 23, Wales three and Scotland three. Care advisers offer hands-on health advice, information and emotional support to patients and their families, and can help guide them through the maze of health services.
Health Minister Edwin Poots has said he is constrained by his limited budget but the report has revealed that 40% of the annual £2.27m cost of emergency care for people with muscular dystrophy and related conditions could be slashed by spending £320,000 on specialist care.
Nicholas Bungay from the Muscular Dystrophy Campaign said: “The Health Minister’s assertion that he has ‘infinite demands but finite resources’ rings hollow for families living with these devastating conditions.
“We are asking for a fraction of what is wasted every year to be invested in care.
“This is an opportunity for Northern Ireland to save funds while improving quality of life for thousands of people.”
The All Party Group on Muscular Dystrophy named the review in dedication to Gerry and Geraldine McCollum, from Bangor, who lost their son Christopher to Duchenne muscular dystrophy when he was just 16.
The group has campaigned with the Muscular Dystrophy Campaign for health services for people with neuromuscular conditions for more than a decade.
Muscular dystrophy is a condition — of which there are 60 different types, including more aggressive types such as Duchenne muscular dystrophy — that causes muscles to weaken and waste over time, leading to increasing disability.
The conditions may affect not only the muscles in the limbs, but also those of the heart and lungs, sometimes significantly shortening life-expectancy. It is estimated that some 2,000 people are affected in Northern Ireland.