There are lots of exciting changes happening at the Muscle Diseases Unit at Salford Royal. The service has expanded, and there are bold ambitions for the future. Dr James Lilleker, co-chair of the Muscle Disease Unit, which provides care to people with muscle wasting conditions living in Greater Manchester, describes some of these recent developments.
The journey started back in 2017. It was clear that a Care Advisor to support patients with muscle wasting conditions in Greater Manchester was required. This coincided with plans to improve our Myotonic Dystrophy service based on the release of the Consensus Based Care Recommendations. Supported by MDUK, we held a patient, relative and carer engagement event to better understand the experiences and needs of local people with this condition. Many innovative ideas were discussed, including an ask for increased remote consulting between consultant appointments. Looking back, this was rather prophetic!
After a competitive process, Phill Kelly was appointed to the role of Neuromuscular Specialist Nurse and Care Advisor. Phill supports our service for people with muscular diseases and runs a specialist myotonic dystrophy clinic. In addition, he liaises closely with paediatric teams across the region, supporting patients moving over to adult care services. Phill answers queries received through our point-of-contact email address and liaises with support services and allied healthcare professionals across the region.
Phill also helps run the Spinal Muscular Atrophy Assessment and Treatment service, with Salford Royal being one of only 11 centres in England offering nusinersen treatment to adults. Setting up this service has also involved recruitment of a neuromuscular physiotherapist to directly support the Muscle Diseases Unit for the first time, and an increase in consultant support, with Dr Tamas Cseh joining Dr Mark Roberts and myself.
We know that there is still a lot to do, but things are on the up and we will continue to improve and develop the service over coming years. We understand the issues faced by people with muscle wasting conditions and are striving to provide the best care possible.
Finally, we know that many people with longstanding diagnoses sometimes lose touch with their specialist centre and aren’t under regular follow-up. This worries me, especially as advancements occur and new treatments for some conditions become available. It is really important to me that people with muscle wasting diseases in Greater Manchester are seen in our service. A referral from your GP might be required, so please email mdu@srft.nhs.uk for advice.