HALF of the thousands in Scotland who are living with a muscle-wasting condition are experiencing disruption to specialist respiratory care.
A new survey has found that two in three are experiencing some sort of disruption to appointments.
Now Muscular Dystrophy UK is urgently recommending increased investment in specialist staff and what it called a "more joined-up" health and social care across Scotland.
More than 6,000 people in Scotland are living with a muscle-wasting condition.
Even though significant progress has been made in the diagnosis and management of these conditions, muscle-wasting conditions are in large part progressive, debilitating, and can often be life-shortening.
Muscular Dystrophy UK say that while neuromuscular staff go above and beyond to coordinate care and ensure everyone has specialist access, over the years there has been "little investment" to increase staffing numbers, particularly outside of the central belt of Glasgow.
The group said the issue has been "greatly exacerbated" over the past two years and "must be addressed" in a post-pandemic world.
It says urgent action is now needed to cut waiting lists, address the growing backlog of new and follow-up appointments by implementing "virtual outreach clinics" in local areas.
Consider flexibilities into the yearly growth of block contracts to reflect the growing neuromuscular population and increase in complex care needs Michaela Regan, head of policy and campaigns at Muscular Dystrophy UK, said: “Thousands of people living with a muscle-wasting condition have experienced significant deterioration in their overall wellbeing throughout the pandemic, including those across Scotland.
"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.”
Today (Weds) the charity will present recommendations at the cross-party parliamentary group on Muscular Dystrophy on how care in Scotland for people living with muscle-wasting conditions can be improved in a post-pandemic world.
They come following a "landmark" survey conducted at the height of the pandemic, of which 400 people from Scotland responded.
The mother of a 12-year-old girl who lives with a life-limiting muscle-wasting condition has joined the call for improved multidisciplinary care as Scotland adjusts to a post-pandemic world.
Sheonad Macfarlane, from Giffnock says her family has found the past two years exceptionally challenging. Eilidh has the very rare condition spinal muscular atrophy (SMA) Type 2 which causes muscle weakness and life-limiting health complications.
At the start of the pandemic Eilidh was classed as clinically extremely vulnerable and her family had to spend prolonged periods of time indoors shielding: this had an impact on her overall physical and mental wellbeing.
Ms Macfarlane, who is a doctor and chair of Muscular Dystrophy UK’s Scottish Council said: “Eilidh was lucky to have been under the care of the paediatric team during this whole time - her multi-disciplinary team were therefore available when we needed them, albeit it remotely.
"I knew that I could pick up the phone and contact them. 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.
"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.”
Ms Macfarlane said that in her professional role throughout the pandemic, the multidisciplinary care of people living with neuromuscular needs on her caseload suffered.
She said that young adults were lost to follow-up by some specialties and that they had no access to allied health care professionals.
But she noted that the care from the respiratory teams, despite being under immense pressure on the front line, remained "constant and exemplary".
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