AN EXHAUSTED mum has called for more support after being told her daughter with a life-limiting condition could wait up to two years for social care intervention.

Sheonad Macfarlane, mum to 12-year-old Eilidh who lives with the condition spinal muscular atrophy said the social care system had been on its knees before the pandemic. She said: “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.”

The family, who live in Giffnock, say they have been shielding for long periods of time since Covid hit in March 2020 and that this has had a huge impact on Eilidh’s health and wellbeing. The condition causes muscle weakness and life-limiting health complications.

Glasgow Times:

She 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.”

People living with muscle-wasting conditions need access to a range of specialist appointments to meet complex care staff. Muscular Dystrophy UK has called for more investment into staffing numbers, an issue they say there has been “little” done about over the years.

Glasgow Times:

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.”