Families, Tailblazers and leading clinicians presented a hard-hitting report, published by the Muscular Dystrophy Campaign, to MLAs and Government Minister Jeffrey Donaldson MP MLA.
Trailblazers Michaela Hollywood and Conor O’Kane, both from Northern Ireland were there to support the cause.
The report, Building on the Foundations: The Need for a Specialist Neuromuscular Service Across Northern Ireland, illustrated that children living with muscle disease in Northern Ireland are being denied access to specialist care.
Campaigners joined forces and held a lobby at Stormont calling on the Northern Ireland Government to ensure that the 1,000 patients with muscle disease in Northern Ireland have access to the vital specialist expertise required to treat their condition.
The report revealed:
- there is no paediatric consultant across NI to provide specialist care to children with muscle disease
- funding for Northern Ireland’s only Care Advisor, whose role is to support and guide patients, will cease next month leaving this essential service vulnerable and dependent on charitable funding
- there is limited access to specialist genetic testing to confirm diagnosis of these devastating conditions
- many adults do not have access to ongoing physiotherapy, or any physiotherapy at all
- the NHS has no designated funding for home ventilation services, and there is a ‘postcode lottery’ in service provision
Attending today’s lobby, Janet Bailie from Belfast, whose son has Duchenne muscular dystrophy, said:
Hundreds of families like mine rely on the support and advice from the Care Advisor in Northern Ireland, but the NHS refuse to fund this post.
Care for boys with Duchenne muscular dystrophy is improving throughout the world – children in Northern Ireland must not be left behind. Without a paediatrician in the country families like me have nowhere to go for specialist care, advice and support.
Co-author of the report, Consultant Neurologist Dr John McConville from Belfast City Hospital said:
We have a good service in place at the muscle clinic in Belfast, but there are concerns about finding a new consultant paediatric neurologist. Too often specialist care is vulnerable and heavily dependent on a few doctors, nurses and allied health professionals rather than embedded in a properly resourced, long-term service.