North Antrim MLA, Robin Swann, joined forces with patients, family members, campaigners and other MLAs at the Northern Ireland Assembly this week [Tuesday 3 July] to demand action from the Health Minister at the launch of a hard-hitting report into care for muscular dystrophy and related neuromuscular conditions in Northern Ireland.
Health Minister Edwin Poots came face to face with parents who have been given confirmation their child had a fatal condition over the telephone, with young people who have waited months for vital appointments and others whose conditions have been worsened owing to a stark shortfall in specialist healthcare and services. The McCollum Report, the culmination of a nine-month inquiry which saw evidence given by both patients and health professionals, has called on the Minister to work with HSC to take urgent action on investment in care.
While the Health Minister has previously expressed his backing for the inquiry, led by MLAs through the All Party Group on Muscular Dystrophy in the Northern Ireland Assembly, and his commitment to improving support for those living with the conditions, he has stressed limited financial resources. However, the report today tells how £2.27million is spent on emergency hospital treatment for people with muscular dystrophy and related neuromuscular conditions, and how NHS studies* suggest that up to 40 percent of these stays could be avoided if just £160 per patient (£320,700) was invested in preventative care.
Specialist care for muscular dystrophy has improved dramatically in recent years across England, Scotland and Wales, with life expectancy increasing by up to ten years, but patients say that lack of investment has left Northern Ireland far behind with healthcare “little different from several decades ago”. The first in-depth investigation into the care and social services offered to patients, The McCollum Report reveals the impact that lack of investment has had for the 2,000 families in Northern Ireland living with these conditions.
It tells of children forced to wait months for appointments with specialists, and adults sometimes years, and of young people waiting up to 18 months for repairs to essential equipment such as wheelchairs. Patients are also said to be having their health put at risk owing to health professionals being unsure of appropriate emergency treatment for those affected and not knowing where to turn for specialist advice. The whole of Northern Ireland is served by just one expert care advisor, despite the rest of the UK having a total of 30 working directly with families and with health staff.
Families and campaigners, led by the Muscular Dystrophy Campaign, are now calling for an HSC leader, backed by the Health Minister, to push forward the proposed investment.
Gerry and Geraldine McCollum from Bangor, who were recognised in the naming of the report, lost their son Christopher to Duchenne muscular dystrophy when he was just 16 years old. Gerry said:
“It’s been over a decade since we lost Christopher, and we have seen little change in the ordeal faced by children and young people with muscular dystrophy, and their families. Christopher went through a horrific ordeal as a very young man. It took a year and a half for the HSC to supply a suitable powered wheelchair for Christopher, owing to lack of funds and the delay took a severe toll on his health and quality of life. He suffered severe pressure sores, a tilt to his neck due to no firm wheelchair head support and severe loss of weight. In his weakened state the MRSA superbug opened the scar on his back. All this was avoidable, caused Christopher to suffer and cost the HSC thousands of pounds to treat. There has been commitment over the years to doing something to end this appalling situation, but each time it has lead to nothing. This has to be the turning point.”
Robin Swann, who is Vice Chair of the All Party Group on Muscular Dystrophy, backed campaigners from North Antrim attending the report launch:
“I was shocked to learn about the daily struggle these patients are facing just to get the basic level of healthcare anyone can expect. It’s appalling that vital services are not being provided in Northern Ireland and I give my full backing to these campaigners in calling for changes to services that could see a vast improvement in their lives.”
Nicholas Bungay, Director of Campaigns, Care and Information at the Muscular Dystrophy Campaign, said:
“People in Northern Ireland living with muscular dystrophy and related neuromuscular conditions have heard many promises made over the years about ending the appalling suffering caused by severely under-funded health services. However, people of all ages are still having their health put at risk and are enduring physical and emotional ordeals unsupported. Health professionals are struggling to find the advice they need to treat patients with these rare conditions.
“The Health Minister has heard from health professionals, from families and from MLAs why decisive action must be taken now. Failing to invest in specialist care does not save money. Northern Ireland is spending £2.27million a year on emergency care for people with these conditions, picking up the pieces after people are unable to find the help and information they need to protect their health.
“We look forward to working with the Minister, with MLAs and with patients in making sure The McCollum Report is the long-awaited turning point we believe it can be.”