A South Belfast woman with a very rare muscle weakness is calling for better health and social care as Northern Ireland transitions into a post-pandemic world.
Claire Boylan, 38, then spoke to all party groups in Northern Ireland on Wednesday about muscular dystrophy and how Covid has affected treatment.
Claire was first diagnosed with a myocardial infarction in his teens, which causes progressive muscle weakness and affects the ankles, ankles, and calf muscles.
“I am one of three people in Northern Ireland who have this special condition,” Claire told Belfast Live.
“For the past eight years I have had to retire to Belfast City Council for medical reasons and then start volunteering to raise awareness of muscular dystrophy in the UK where there is still a huge lack of knowledge about wasting cases like mine.”
At the start of the Covid pandemic, Claire was classified as clinically at risk, so she had to spend extended periods of time indoors.
Claire has struggled for the past two years when it comes to getting the services she needs to help her with her condition. He said improving multidisciplinary care is vital.
“Trying to see an international doctor was pretty much impossible, and most appointments were devoted to phone or video calls.
“I also experienced a delay in the ventilation system that I use at night,” he explained.
“More support is needed, especially for young people who have just left childcare services, because there really is a discord between services.
“If services like hydrotherapy are more widely available, that would be very beneficial for people with muscle wasting.”
It is estimated that more than 2,000 people in Northern Ireland have muscle problems and need access to specialists and clinics for their complex care needs.
Participants in a campaign similar to Claire’s say there have been a number of challenges in neuromuscular care over the years due to limited clinic space and increased staff capacity.
Furthermore, patterns of exploitation do not provide sufficient flexibility to provide the support required by a growing neuromuscular population.
Claire says these problems have only worsened in the past two years and need to be addressed because we are used to living in a post-pandemic world.
Northern Ireland has only one epicenter of the outbreak in Belfast, where all specialized neuromuscular care is provided, meaning some patients have to travel across the country for treatment.
Hubb also lacks sufficient skilled staff with only two part time neuromuscular consultants, two full time neuromuscular clinical nurses and two full time physical therapists running all clinics to support the Neuromuscular Society in Northern Ireland.
On Wednesday, the muscular dystrophy UK charity will provide recommendations to the All-Party Group that specializes in muscular dystrophy in Northern Ireland on how to improve care for people with muscular problems in a post-pandemic world.
The recommendations come after a baseline investigation conducted at the height of the pandemic.
Claire added: “England has independent nerve and muscle centers and I think Northern Ireland can benefit from that.
“We need to make sure there are improved systems in place to help people cope, understand these conditions and know that they are not alone.
“It is very important that these services, which are a lifeline for many, are better funded and supported.”
Muscular dystrophy the UK requires six priorities for recovery, including:
გამო Provide sustainable and consistent care and funding for neuromuscular services, including multiple neuromuscular consultants, nurses, physical therapists, psychologists and occupational therapists
გაზრ Increase the number of neuromuscular staff who can work with community services to bridge the gap between specialist teams and the surrounding areas
მი Providing specialized mental health services for people with neuromuscular diseases.
Create local virtual environmental clinics to help reduce waiting lists and tackle the growing backlog
შექმნა Establishment of a regional NHS-run clinical network across Northern Ireland and designation of neuromuscular facilities to maintain contact with government
უზრუნველყოფ Providing specific clinical space for people with muscle problems to schedule appointments when they need them
Michaela Reagan, UK Director of Muscular Dystrophy Policy and Campaigns, said: “Thousands of people with muscular problems have experienced a significant deterioration in their overall health during the pandemic, including in Northern Ireland.
“Many people like Claire will now require more complex and timely intensive care due to the pandemic, so implementing our recommendations will be possible for the muscle wasting community.”
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