Campaigner backs special care centre

Campaigner backs special care centre

4 November 2015

A LOCAL disability rights campaigner has given her backing to a new centre diagnosing rare diseases in Northern Ireland.

Michaela Hollywood, from Crossgar, who has spinal muscular atrophy, has campaigned for investment in specialist neuromuscular care for people living with muscle-wasting conditions here.

Health Minister Simon Hamilton announced this week there will be a £3.3m investment to create a Northern Ireland Genomics Medicine Centre (NIGMC) that will provide rare disease patients with a much earlier and more accurate diagnosis. 

“Today’s news will be welcome for everyone living with a rare disease, including people with muscle-wasting conditions,” said Michaela. 

“This is another encouraging step towards appropriate care and treatment, like the recent securing of investment for a neuromuscular consultant and adult neuromuscular nurse specialist in the Belfast Trust.

“I want to see us all working together with the Health and Social Care Board, the Department and the Health Minister as well as patients and their representative organisations. We need to ensure we keep moving forward towards a safer, fairer health care system for all of us with rare diseases, which is more financially sustainable in the current climate of cuts.”

Dr Amy Jayne McKnight, chair of Muscular Dystrophy UK’s Northern Ireland Council and director of the Northern Ireland Rare Disease Partnership, also welcomed the news.

“It has been a pleasure and privilege to work with some very keen and enthusiastic people to help drive major improvements for individuals and families living with rare diseases in Northern Ireland,” she said.

“Muscular Dystrophy has been fortunate to be the pilot for many of the rare disease initiatives in Northern Ireland and we look forward to continued partnership working to deliver better care for affected individuals.

“These complementary announcements for the Northern Ireland rare disease implementation plan and £3.3 million investment in our Northern Ireland Genomics Medicine Centre represent the culmination of many years work and will lead to faster, more accurate diagnosis, improved treatment, and better access to relevant information for patients, carers, and healthcare professionals.”