MDUK will call for improved multidisciplinary care across Scotland at the Cross-Party Parliamentary Group on Muscular Dystrophy today (January 19).
The charity's recommendations will focus on how care can be improved in a post-pandemic world following a landmark survey conducted at the height of the pandemic, of which 400 people from Scotland responded.
Sheonad Macfarlane is both a doctor and chair of Muscular Dystrophy UK's Scottish Council and will speak at today's meeting.
Sheonad is also mum to 12-year-old Eilidh (pictured together) who lives with SMA Type 2. She says her family, from Giffnock in Glasgow, has found the past two years exceptionally challenging. 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, which impacted her physical and mental wellbeing.
Sheonad 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.”
It is estimated that there are more than 6,000 people in Scotland living with a muscle-wasting condition. People living with muscle-wasting conditions require access to a range of specialist appointments and clinicians to meet their complex care needs.
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. This issue has been greatly exacerbated over the past two years and must be addressed as we adjust to life in a post-pandemic world.
In her professional role, Sheonad said that 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.
However, she notes that the care from the respiratory teams remained constant and exemplary despite being under immense pressure on the front line.
MDUK is calling for both short and long-term recovery priorities. These include:
- Increased investment in the national neuromuscular teams with more neuromuscular consultant, physiotherapy, nurse specialist and psychology time
- Appointing a full-time network manager with administration support for the Scottish Muscle Network
- Reduce 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
You can download and read the report for Scotland in full here.
Michaela Regan, Head of Policy and Campaigns at MDUK, 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.”