Friday 15 April 2011
Northern Ireland families to fight for muscle-wasting disease care
Northern Ireland families affected by devastating muscle-wasting diseases are joining forces for a major campaign calling on NHS leaders to tackle poor levels of care and support for the conditions, and to cut the £2.5 million spent every year on emergency hospital admissions for patients.
The Northern Ireland Muscle Group, backed by charity the Muscular Dystrophy Campaign, says that lack of investment in ongoing treatment for the 2,000 patients with muscle-wasting diseases in Northern Ireland has left the country "lagging behind the rest of the UK". The group, which officially formed officially earlier this month, say the result has been both heavy emergency treatment costs for the NHS, and distress and confusion for families trying to live with debilitating and often life-limiting conditions. Together they are launching an appeal for an urgent review by health leaders into muscle-wasting disease care. MLA candidate Conall McDevitt is backing the campaign and has vowed to make the concerns of families heard in Stormont.
Frances Ashe (29) from Newtonabbey and her daughter both have the muscle-wasting disease Bethlem myopathy. Frances says:
"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. Many of the conditions lead to the need to use a wheelchair and a number cause fatal breathing and heart problems. Good ongoing care such as specialist physiotherapy, hydrotherapy and access to ventilation equipment can make a huge difference to quality - and length - of life for people. It keeps them active and out of hospital. We have seen some positive improvements in care in recent years, but many families are still just not getting the advice, support, services and information they need to manage these conditions. We need the NHS to take a closer look at Northern Ireland's muscle-wasting disease care and we are going to work together to make sure that this happens."
The group say that more specialist care advisors for muscle-wasting disease are needed. There is currently just one such post in the whole of Northern Ireland, which up until this month has been subsidised by charitable donations. Care advisors provide health information and practical and emotional support to people left reeling from diagnoses of devastating muscle-wasting conditions. They guide families through access to an array of specialist treatments and services such as physiotherapy, occupational therapy, home-care, home adaptations and wheelchair assessments.
Gerry McCollum from Bangor, who lost his16-year-old son Christopher to Duchenne muscular dystrophy, says that the care advisor is "the most important link there is" for families living with muscle-wasting disease:
"When we first received the news that our son had Duchenne, the care advisor was on the phone within a matter of hours to help us. From the first minute we spoke to her we felt we weren't alone. She was there all the way through to help us, making sure Christopher was put in touch with specialists who fully understood his condition. Her emotional support was vital. It is particularly important for children and young people with a muscle-wasting disease for them to know someone is thinking of them and who they can turn to when things get really difficult."
Nic Bungay, Director of Care, Support and Campaigns at the Muscular Dystrophy Campaign said:
"These are difficult financial times, but what these families are asking for is the NHS in Northern Ireland to invest a little to save a great deal in the long-run. Emergency hospital treatment is costly to the health service and causes extreme distress to patients and their families. It is so often avoidable when people are receiving the advice and day-to-day care they need to keep in the best possible health. We will be backing Northern Ireland patients every step of the way as they push this campaign forward."
The Muscular Dystrophy Campaign is the leading UK charity focusing on muscle-wasting disease. It has pioneered the search for treatments and cures for over 50 years, and is dedicated to improving the lives of all children and adults affected by muscle disease.
We fund world-class research to find effective treatments and cures; provide practical information, advice and emotional support for individuals, their families and carers; campaign to raise awareness and bring about change; award grants towards the cost of specialist equipment; and provide specialist education and development for health professionals.
