MSPs to be urged to improve care for those with muscle-wasting conditions
Muscular Dystrophy UK will later present its recommendations to a cross-party group of MSPs at Holyrood.
Your support helps us to tell the story
From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it's investigating the financials of Elon Musk's pro-Trump PAC or producing our latest documentary, 'The A Word', which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging.
At such a critical moment in US history, we need reporters on the ground. Your donation allows us to keep sending journalists to speak to both sides of the story.
The Independent is trusted by Americans across the entire political spectrum. And unlike many other quality news outlets, we choose not to lock Americans out of our reporting and analysis with paywalls. We believe quality journalism should be available to everyone, paid for by those who can afford it.
Your support makes all the difference.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 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 6,000 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.