Shining a Light to ensure a brighter future

Two weeks ago, we launched our Northern Ireland Shining a Light report, the final in our series that explores the effect the pandemic has had on people living with muscle-wasting conditions and their access to specialist neuromuscular services.

While the reports look at the impacts of shielding and social isolation, they also lift a magnifying glass to the pre-existing gaps in neuromuscular care. MDUK has put forward key recommendations that will use this reflective opportunity to close the gaps in quality of care, so that everyone has access to the physical and mental wellbeing support that they need.

While we initially only aimed to publish one report on the UK as a whole, it became clear that we needed to focus on each of our devolved nations in turn. Even before the pandemic, access to key services was inconsistent across the United Kingdom.  Now is a critical time to examine the current state of neuromuscular services, identify the barriers to neuromuscular care, and implement recommendations that will change the quality and equality of support that can be accessed across the UK.

As we enter a time of adjusting to “life with COVID-19", we must seize this opportunity to drive for change. Not only is this an opportunity to recover from the effects of the pandemic, but to reach for long-term changes that will improve the care of all people living with muscle-wasting conditions. As people with muscle-wasting conditions require a multidisciplinary approach to care and support, the recommendations in our Shining a Light reports cover a range of healthcare issues. Though each nation has its own unique needs, as covered in their individual reports, here are a few of the general overlapping changes we are calling on:

-    Better investment in staffing:  across England and the devolved nations,  lack of staffing is a pressing focus. Our Wales ‘Shining a Light’ report calls for an increase in specialist neuromuscular healthcare staff, while our Scotland report requests a review of current staffing. Our Northern Ireland report draws attention to the fact that there is currently only a handful of specialist Neuromuscular staff covering the whole country. Improvements must be made by appropriately training and upskilling existing healthcare staff involved in neuromuscular care to expand the workforce.

-    Improved coordinated care: currently, many people with muscle-wasting conditions spend a lot of time travelling to separate specialist appointments. We are calling for more administrative support to ensure that appointments are better coordinated to reduce the wider, time consuming impact that appointments have on the lives of individuals and their support system.

-    Better mental health support: the pandemic has had a negative impact on the mental health of those with muscle-wasting conditions as many have not only had the pressure of shielding but have also experienced significant accelerated deterioration to their physical health while doing so. Now, it is even more vital to address the need for mental health support. We are working with clinical teams in Scotland to review their current referral system, responding to a Health and Social Care Select Committee in the Senedd and meeting with the parliamentary groups in each nation to raise further awareness.  We are continuing this drive by re-launching our mental health matters campaign; more information will follow shortly on how you can get involved. 

Each of our recommendations is a step towards a world with better health and social care for people living with muscle-wasting conditions. We are hopeful that our Shining a Light reports mark the beginning of an era of change for the better. 

If you want to help drive this change, contact your local MP, MLA, MS, or MSP to tell them about your concerns and that you would value them supporting this campaign. If you would like help with taking part in this campaign, please contact us at