Woman with rare illness Miyoshi Myopathy calls for improved healthcare

Claire Boylan from Belfast believes the level of care that people with muscle wasting conditions have been given during the pandemic has declined.

A woman who lives with a rare muscle-wasting condition is calling for improved multidisciplinary care in Northern Ireland. Claire Boylan from Belfast lives with Miyoshi Myopathy, which causes progressive muscle weakness and affects her feet, ankles and calf muscles.

At the start of the pandemic she was classed as clinically extremely vulnerable so had to spend prolonged periods of time indoors shielding.

Claire feels as if the pandemic has hampered the level of care she has been provided with.

“I have experienced delays in getting supplies for the ventilation machine I use at night and most of my appointments have been pivoted to the telephone or video calls," Claire said.

"I do feel that there needs to be more support, especially for young adults who recently have transitioned from children services as there is definitely a gulf in support between the services.

"I also feel that if services like hydrotherapy were more widely available then it would greatly help people living with muscle-wasting conditions. It’s very important for multidisciplinary care to be improved.” It is estimated that there are more than 2,000 people in Northern Ireland living with a muscle-wasting condition.

The charity Muscular Dystrophy UK say there is limited clinic space and stretched staff capacity within the neuromuscular care sector.

In particular, it noted there are only two part-time neuromuscular consultants, two full-time neuromuscular clinicals nurses and two full-time physiotherapists running all clinics to support Northern Ireland’s neuromuscular community.

The organisation also says because there is only one hub for the condition in Belfast, many patients are left having to travel across the country for treatment.

Today, the charity is presenting its recommendations on how care for people with muscle-wasting conditions can be improved in a post-pandemic world

It is calling for more sustainable and consistent care, with funding provided for more specialist staff, including those that can work with community services.

It also says specialist mental health services are needed to improve the wellbeing of patients.

It is calling for local virtual outreach clinics, along with specific clinical spaces for the condition to reduce waiting lists.

For Claire, changes to the system are essential: “England has standalone neuromuscular centres and I believe that Northern Ireland could benefit from one, too.

"We need to ensure that there are enhanced systems in place to help individuals cope and understand these conditions and for them to know that they’re not alone.

"It is so important that these services – which are a lifeline to many – are better funded and supported," Claire added. Many people like Claire will now require more complex and time-intensive care as a result of the pandemic, so implementing our recommendations would be life-changing for the muscle-wasting community," Michaela Regan, the Head of Policy and Campaigns at Muscular Dystrophy UK, said.

"We look forward to presenting our findings at the meeting and working with stakeholders to implement our recommendations.”