SOUTH Down MLA Karen McKevitt (SDLP) has been appointed as the new Chair of an influential group in the Northern Ireland Assembly dedicated to tackling a lack of specialist support for those living with devastating muscle-wasting conditions.
Ms McKevitt will take on the role as Chair of the All-Party Group on Muscular Dystrophy, which was set up in 2011 to address a need for better emotional and practical support and specialist medical care for the 2,000 children and adults living with muscular dystrophy and related neuromuscular conditions.
Muscular dystrophy and related neuromuscular conditions are progressive, causing muscles to weaken and waste over time, leading to increasing disability and often, life-threatening heart and respiratory complications. The All Party Group on Muscular Dystrophy’s hard-hitting McCollum Report published in 2012, revealed how families and health professionals in Northern Ireland believe a stark shortfall in specialist neuromuscular care is dramatically reducing patients’ quality of life – and even putting lives at risk.
Families in Northern Ireland, supported by the Muscular Dystrophy Campaign, told of diagnoses of life-shortening muscle-wasting conditions being given over the telephone, months waiting for vital appointments and conditions being significantly worsened owing to ‘unacceptable’ waits for essential equipment.
South Down MLA, Karen McKevitt and Chair of the All Party Group on Muscular Dystrophy, said: “I am honoured to have been elected to the position of Chair of the All Party Group on Muscular Dystrophy. There are 2,000 families in this country that have gone through the traumatic experience of being told a family member has a progressive muscle-wasting disease.
“As a member of the group since it was launched, I have heard from many families who are still just not getting the advice, support, services and information they need to manage these conditions. Iwill endeavour to continue the fight for investment in care advisors, consultants and specialist physiotherapists and to back families in their campaigns for a fair standard of care.”
Karen will be the leading voice in calling on investment in essential specialised services and social care. She will lead a campaign for new ‘care advisor’ posts – expert professionals who work directly with families to provide essential support and advice. There is currently just one such post in Northern Ireland, focusing on children, and campaigners say that more help is needed for teenagers and adults.
Michaela Hollywood (23) from Downpatrick who has spinal muscular atrophy (SMA), said: “I have witnessed the devastating impact of overstretched specialist care in Northern Ireland. My family has been dealing with this cruel condition for 31 years… both myself and my older sister were born with it. The reality is that services were so much better in my younger years, before we sadly lost my sister to spinal muscular atrophy.
“The recent appointment of a neuromuscular nurse specialist within the Belfast Trust is a huge milestone for children affected by neuromuscular conditions across Northern Ireland. However, there is currently no nurse specialist cover for adults. It can be hugely isolating at times. Having someone who I could turn to, who genuinely understands what I am going through and is able to give not only give me practical medical advice but emotional support, would make an enormous difference.”
Dr Amy Jayne McKnight, whose father has the neuromuscular condition called spinal muscular atrophy (SMA), is the Chair of the Muscular Dystrophy Campaign’s Northern Ireland Committee. She led the campaigning effort to encourage the HSC to invest in specialist care. She said: “I look forward to working with the All-Party Group and Karen over the coming months to address the failures that we currently live with and building on the positive foundations laid down by Conall McDevitt and the McCollum Report.”
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