Niall Deeney

Laura Smith’s son Callum has been diagnosed with a rare form of muscular dystrophy which means that his muscles will become stiff and his movement restricted before the incurable condition eventually causes paralysis and claims his life. Care for neuromuscular conditions in Northern Ireland was roundly criticised in a damning report produced by an ‘All Party Working Group’ (APWG) at Stormont. Working alongside the APWG were UK charity ‘the Muscular Dystrophy Campaign’, who told the Sentinel this week about the substantial differences in the standard of care available to those who suffer from neuromuscular conditions in Britain and those in Northern Ireland. They pointed to the specialist ‘Centre of Excellence’ in Newcastle which is available to patients in the North East of England as just one example of the gulf in standards between Britain and Northern Ireland. The Centre of Excellence serves an area with similar numbers of people who suffer from neuromuscular conditions to Northern Ireland. The Muscular Dystrophy Campaign has worked closely with the All Party Working Group at Stormont to produce a substantial document entitled the ‘McCollum Report’ – named in honour of Gerry and Geraldine McCollum from Bangor, who lost their son Christopher when he was just 16-years-old to the same condition that Limavady boy Callum McCorriston has been diagnosed with, Duchenne muscular dystrophy. The McCollum Report, a damning indictment of neuromuscular care provision in Northern Ireland, made a series of recommendations to the Health Minister in order to ensure the hardships suffered by Christopher McCollum are not inflicted upon children such as Limavady boy Callum McCorriston. His mother Laura Smith has described Health Minister Edwin Poots’ response to the McCollum Report as a ‘step in the right direction’, saying that she has already noticed the difference in Callum’s care, but stressed that there was still much to be done to bring Northern Ireland into line with the rest of the UK. She said: “He seems to be putting things in the right direction. I do notice changes and there are a lot of different things going on that were not before. There is an extra consultant there to take some of the workload off. We were up with a physiotherapist who gave him (Callum) different tests. They are to act as a baseline so they can tell if there has been any change, so that is good. “Something else they are doing is they have started a registry of patients so they can see exactly how many people there are suffering from neuromuscular conditions. “These things are all progress, moving in the right direction. But there is still a lot more to be done. Even now we hear of parents being told their children’s diagnosis over the phone. That is just terrible, to hear that sort of life-changing news over the phone, when you have so many questions. “For me, something that still needs done is a Centre of Excellence where everything can be done in the same place. There is to be some liaison with the specialists from England who are going to be coming over here. They will liaise with the team over here, which is a positive step forward but I hope that doesn’t mean they are not going ahead with a Centre of Excellence here. “Another question I would have for the Minister is why he has said the ‘Standards of Care’ – a document produced by Action Duchenne, the charity that we work with – doesn’t apply here. The standards of care from Action Duchenne help you see what care your child should be getting. I can’t wrap my head around that one – why does it not apply in Northern Ireland when it is the same condition after all. “It is not just that the standard of care between Northern Ireland and everywhere else in the UK is so different, it is even between the different health Trusts. I was in with our physio who told me she can’t order a night-splint – a thing to keep Callum’s foot in place or he will end up walking on his tip-toes and needing an operation. The Belfast Trust can order it, but they can’t pay for it. The Western Trust can pay for it but who is going to order it? They don’t seem to be working together. “If everything was under the same roof the way it is in England, that wouldn’t happen. Callum’s care team have been very good but they are getting no help with the way everything is run. “There are 63 or 66 patients with Duchenne Muscular Dystrophy in Northern Ireland, but there are 2,200 people with neuromuscular conditions as well who would all benefit from a Centre of Excellence like the one in Newcastle.” The Muscular Dystrophy campaign point out that millions of pounds are wasted every year on Accident and Emergency treatment that could be avoided with much smaller investment in specialist treatment. Nic Bungay from the Muscular Dystrophy Campaign said: “It is no good when you are talking about a life-limiting condition to talk about changes you are going to make down the line. People need this now.”