Tuesday 7 February 2012
Patients and families take centre stage at Northern Ireland Assembly Inquiry
Northern Ireland's 2,000 people living with devastating muscle-wasting conditions are struggling to access healthcare due to a fragmented system which forces them to travel miles across the country for appointments, and denies them access to specialist workers.
Today, patients and their families, backed by the Muscular Dystrophy Campaign, gave evidence as part of a major inquiry into specialist care by the All Party Group on Muscular Dystrophy in the Northern Ireland Assembly. They reported that care for the often life-threatening conditions is "sporadic" with patients forced to travel between Northern Ireland's hospitals to see heart, chest and muscle specialists whose advice is critical to protecting their health.
Patients are also using the meeting to campaign at the lack of specialist Muscular Dystrophy Care Advisors in Northern Ireland. The country is now the only remaining in the UK without an expert healthcare worker in place.
Patients say that it is vital that there is now investment into a proper neuromuscular network with more specialist staff including a neuromuscular Care Advisor. They argue this would save them travelling miles across the country for appointments as where these networks exist in other parts of the UK, patients are able to access all their specialist treatment in one location through outreach clinics.
Michaela Hollywood, from Downpatrick, has spinal muscular atrophy. She will tell MLAs that patients need to be able to access all their services in one hospital, as they can in other parts of the UK:
Neuromuscular conditions don't just affect the limbs. They cause all kinds of chest, heart and digestion problems too. People don't just see their neuromuscular consultant and GP, but cardiologists, respiratory specialists, physiotherapists, occupational therapists. These health professionals are spread across different departments and hospitals. On consecutive days I might have an appointment to check my heart at Downpatrick hospital and the next day my lungs at Belfast City Hospital over 20 miles away. Physiotherapy and wheelchair assessments will be somewhere else again. There's no joined up service. It's not only a real waste of money for the NHS, but makes it very difficult for families to access the sometimes dizzying array of services they need.
Nic Bungay, Director of Campaigns, Care and Support at the Muscular Dystrophy Campaign said:
It's unacceptable that Northern Ireland is currently the only part of the UK without a Muscular Dystrophy Care Advisor.
It is also unfair to expect people with severe disabilities to travel for miles - and an inefficient use of the NHS' money. The Muscular Dystrophy Campaign would like to see some real investment in specialist teams - working as part of a managed clinical neuromuscular network. This kind of network would allow specialist teams to hold clinics closer to peoples' homes - which would be of huge benefit to families in Northern Ireland living with severe, muscle wasting conditions.
For more information about the All Party Group on Muscular Dystrophy Inquiry, please get in touch on 020 7803 4839 or by email to j.kingsley@muscular-dystrophy.org
