On Tuesday 24th May, MDUK attended the first hybrid All-Party Parliamentary Group roundtable meeting since the pandemic began. We were particularly pleased to see so many attendees including a range of parliamentarians, people with a neuromuscular condition, their families, and representatives from Clinical Commissioning Groups.
At the meeting, we discussed the latest updates on the incoming Integrated Care Systems (ICSs) which will change how the NHS is organised and how services are commissioned – with more of a focus intended to be on a local system working together to look at what is needed in an area.
It was particularly great to hear from Professor Ros Quinlivan, Chair of the London and South East Coast Neuromuscular Network and Consultant Neurologist, and Dr Niran Nirmalananthan, Consultant Neurologist at St George's University Hospitals NHS Foundation Trust. Both speakers emphasised the opportunity to work closely with local ICSs through the neuromuscular networks to address gaps in services.
It was also valuable to hear examples from Dr Niran Nirmalananthan, who spoke about instances in London where collaborations and networks had led to funded patient engagement groups and developing specific neuromuscular roles.
Attendees heard how the network approach is already demonstrating some positive outcomes and examples of good practice. However, there was an overarching concern on how little has been communicated to both clinicians and patients on how services may change in the future.
MDUK is already working on building a collaborative approach with ICSs and the Neuromuscular networks to meet the needs of their population.
Gaining insight from attendees on barriers in place that will hinder integrated care was helpful to hear, particularly the willingness to engage with their own ICSs to discuss how best to join up care given the number of services people with a muscle-wasting condition access. The importance of ensuring integration includes specialist, community and social services was acknowledged.
Going forward, MDUK will continue to work with Mary Glindon MP, Chair of the APPG on Muscular Dystrophy, and our neuromuscular networks to engage with ICSs to push for improvements to neuromuscular services to increase knowledge, awareness and opportunities to improve care.
For more information on our parliamentary work across the UK, please visit our webpage: or please get in touch with our policy team at campaigns@musculardystrophyuk.org.