MLA leads fight for better care for families living with muscular dystrophy
South Down MLA Karen McKevitt 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.
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.
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.
Karen told Newry Times, “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.
She added, “I will 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.”
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