In July 2021, we published the 'Shining a Light: the impact of COVID-19 and the future of care for people with a muscle-wasting condition' report. We reported on concerns across the UK arising from delays to accessing critical appointments, the mental health impact of not seeing family and carers while shielding, loss of mobility and increases in muscle weakness. People with a muscle-wasting condition also told us they worried the progression of their condition was irreversible, and they wouldn't regain the physical and mental health they had pre-pandemic.
Following on from this report, MDUK is planning to publish a Scotland report identifying key recommendations to improve access to neuromuscular services in Scotland, while also acknowledging the differences between the Scottish healthcare system and those in the rest of the UK.
The CPG meeting gave us the opportunity to hear your stories, which will shape this report and ensure we are focusing on the appropriate areas. We were pleased to have so many of you attend and hearing your feedback was invaluable. You told us about:
- the success of virtual appointments and your hope that you can continue benefiting from a hybrid approach for appointments.
- the impact of low resources and staffing on your access to critical specialist appointments, and
- the need to provide more coordinated care to reduce the burden of appointments on your day-to-day activities.
We will incorporate this feedback into our upcoming Scottish report, which we are hoping to launch in early 2022.
Jackie Bailie MSP, Chair of the Scottish CPG on Muscular Dystrophy, said:
Thank you to everyone for attending our CPG meeting. It was wonderful to hear from so many people and to get real life experiences of where the gaps in neuromuscular care lie. I know the pandemic has had a devastating impact on many people, and I will work closely with Muscular Dystrophy UK to put forward solutions to Scottish Government and NHS Scotland. We want to ensure everyone with a muscle-wasting condition has access to high-quality neuromuscular care when they need it.
Sheonad Macfarlane, Chair of MDUK's Scottish Council, and mother of a daughter with spinal muscular atrophy, said:
People with a muscle-wasting condition have really struggled during the pandemic due to shielding, which has had a detrimental impact on their overall wellbeing. This meeting was a great opportunity for people to tell their stories. Some great points were raised, which will need to be tackled to improve neuromuscular services Scotland-wide, and we want to help identify solutions that will improve the lives of people with a muscle-wasting condition.
If you would like to share your experiences of getting access to neuromuscular healthcare services during the pandemic, please get in touch with us at campaigns@musculardystrophyuk.org