It was a chance to bring together care advisors from across the UK to discuss the impact of the COVID-19 pandemic on our community. It was also an opportunity to share thoughts on care improvements that MDUK and health professionals can make by working together. The conference focused on three specific themes:
- emotional support post-shielding
- alternative ways of working during the pandemic, and lessons learnt
- access to new treatments
We had a great discussion of these topics and a few key points emerged:
- There is a gap in mental health services and accessing emotional support has become even more difficult for people with muscle-wasting conditions, since the start of the pandemic.
- Virtual appointments remove the burden of travelling long distances, which allows for great flexibility. However, health professionals prefer face-to-face appointments so they can properly assess a patient's progress, as a lot of information is lost over a screen. So, it is vital to get in-person appointments up-and-running again, for those who need them.
- Since the pandemic started, people with muscle-wasting conditions have had long waiting times for specialist appointments.
- There is a need for improved communication between neuromuscular specialists and care advisors about treatment plans, so they can better support their patient.
- It can be difficult for healthcare professionals to manage their patients' expectations about gene therapy, since it is not always successful and may present ensuing challenges.
Feedback from care advisors highlighted the gaps in neuromuscular services, which have been exacerbated by the COVID-19 pandemic. We'll continue to work with healthcare professionals to ensure these issues improve in the UK, especially through our "Shining a Light: the impact of COVID-19 and the future of care for people with a muscle-wasting condition" campaign.
If you want to hear more about our conference or the other work we do, please get in touch with us at campaigns@musculardystrophyuk.org