A mother whose 12-year-old daughter has a life-limiting muscle-wasting condition will on Wednesday call for better care for sufferers as Scotland moves into the post-Covid era.
Muscular Dystrophy UK will later present its recommendations to a cross-party group of MSPs at Holyrood in its bid to convince the Scottish Government to implement a raft of improvements, including calls to reduce waiting lists and boost investment in national neuromuscular teams.
Sheonad Macfarlane, whose daughter Eilidh has the very rare condition SMA Type 2, which causes muscle weakness and life-limiting health complications, will join the calls for more joined up health and social-care.
“Eilidh was lucky to have been under the care of the paediatric team during this whole time – her multidisciplinary team were therefore available when we needed them, albeit it remotely. I knew that I could pick up the phone and contact them,” she said.
“This ongoing communication and direct point of contact is essential in multidisciplinary care.
“It should be the norm so that when there is a crisis – such as in times of a pandemic – there will always be a lead health care professional who knows the patient and can advocate for their need to access appropriate and timely services,” said the mother-of-two from Glasgow, who is chairman of Muscular Dystrophy UK’s Scottish Council and also a doctor.
“In contrast, we were isolated from family and friends with no access to additional support and care for Eilidh.
“The social care system was on its knees prior to the pandemic and it’s close to collapse now; we’ve have been told that it could be a couple of years before social care teams are able to support her in future.
“That’s truly terrifying as we are exhausted.”
There are around 6000 people in Scotland with a muscle-wasting condition who require access to a range of specialist treatments and services.
Muscular Dystrophy UK said that there had been little investment to increase staffing numbers, particularly outside the central belt, and over the past two years had been exacerbated.
Michaela Regan, head of policy and campaigns at the charity, said that thousands of people across the country with a muscle-wasting condition “have experienced significant deterioration in their overall wellbeing throughout the pandemic”.
She added: “Muscular Dystrophy UK urges stakeholders in Scotland to implement the recommendations from our report to ensure people with a muscle-wasting condition receive the care they need to improve overall health outcomes and quality of life as we continue to navigate a post-pandemic era.”
The recommendations made to the cross-party parliamentary group for muscular dystrophy comes after a survey by the charity, conducted at the height of the coronavirus pandemic, pf which 400 people from Scotland responded.