Swann gives voice to families and children living with Duchenne Muscular Dystrophy

Action Duchenne – a charity set up and run by parents and supporters of boys with Duchenne, an incurable muscle-wasting disease – has been campaigning to highlight the need for better coordination and integration of services across Northern Ireland to support young people living with Duchenne from diagnosis.

In July, a review of neuromuscular services in Northern Ireland called the McCollum Report was published. This report, named after the McCollum family whose son had Duchenne, highlighted the gaps in services and lack of monitoring of the condition. It spoke of the small pool of consultants in Northern Ireland who are ‘desperately overstretched’ and families flying to the Neuromuscular Centre of Excellence in Newcastle for care. The gaps in care provision mean that children born with Duchenne in Denmark can live into their fifties, whilst the average life expectancy in Northern Ireland is around 20 years old.

The McCollum Report pointed out that, based on NHS data, emergency unplanned admissions to hospital cost £2.27million. It holds that 40% of this could be saved with better monitoring of the condition. Investing into and joining up neuromuscular services would lead to a large over-all saving, whilst also giving those with Duchenne a longer and better quality of life.

Assemblyman Swann, who is also North Antrim UUP Chairman and Party Chief Whip, championed families, calling for a reduction in wheelchair waiting times and ensuring that the long wait for a Neuromuscular Care Advisor post to be filled is over.

Alongside these points, Mr Swann called for the many challenges that face Duchenne sufferers to be alleviated: He said: “When we talk of Duchenne and life expectancy, those of us in the House who are parents know that no parent wants to, or should, outlive their child and that each day of that child’s life should see a quality of life and support. It should not be a struggle waiting for a wheelchair or not having a named health clinician whom they can contact for support... Families living with Duchenne speak of the perpetual fight for services; the lack of information on available services and a dearth of support from diagnosis... The challenges are out there for Duchenne sufferers of all ages.”

Andy McClean, a trustee of Action Duchenne and father of Ethan, a young boy with Duchenne said: “The standards of clinical care in Northern Ireland are dire when compared to the facilities Centres of Excellence in Newcastle and London provide. I hope that the recommendations which Mr Poots MLA has agreed will be put in place swiftly, but am disappointed that not all recommendations are being adopted. This debate must act as a catalyst for further improvements and I hope that a meeting will be set up in the near future to discuss the recommendations that are not being implemented to ensure they continue to be rightly understood as the way forward for addressing MD needs in Northern Ireland.”

Andy Soar, Campaign Officer for Action Duchenne said: “We need this to be the start of the process. Duchenne is a devastating and little known condition. The absence of support, advice and intervention has gone on for too long. “Specialism needs to be joined up in Northern Ireland and I urge the Health Committee and Mr Poots MLA to send a strong message out to families and continue to work on the recommendations to bring services up to the required standard.”