#strongerforlonger - Muscular Dystrophy therapies

We hear a lot about the impact of our therapy service from service users, about how it enables them to take back control and offers an opportunity to live well with their condition. 

One interesting perspective we haven't yet shared with you though, is that of a health professional in the neuromuscular field. Alice Roe, Clinical Nurse Specialist, works with neuromuscular patients at the Queen Elizabeth Hospital in Birmingham, one of our sources of referral. Here she shares her perspective on the unique offering at the Muscular Dystrophy Support Centre and why it is so important. 

"The support that the Muscular Dystrophy Support Centre is able to give patients is phenomenal.  The patients that I have spoken to have all praised the depth and breadth of knowledge that the service providers at the MD Support Centre have been able to offer and they feel that the treatment they receive is complimentary to the treatment that they receive from the NHS services.

“The fact that as a nurse, I can offer an alternative to these patients is wonderful.  Unfortunately very few treatments exist for these cohort of patients and so therefore the focus has to be on how we can manage symptoms.  I feel that's exactly what the MD Support Centre offer.  I also feel that fact that it is run by those with muscular dystrophies themselves, also helps patients as it gives them an alternative outlet to speak to someone who has a similar condition to themselves. 

“Patients are also immensely enthusiastic about the satellite clinics that have been set up and that access for them will be closer to home.  This offers a unique opportunity for me as a clinician to host clinics at these satellites, so that patients have easier access to the services and support that I can offer them.   It also gives potential for unsupported patients to be referred in to the services we offer here at the QE (Queen Elizabeth Hospital, Birmingham), as good professional links exist between myself and those working at the MD Support Centre.  The help they provide this patient group is invaluable.

“This includes the emotional support that they are able to offer.  Patients that I speak to feel very comfortable in the surroundings at the MD Support Centre, as it is run by people with muscular dystrophies. Therefore the empathy and emotional care which can be offered through this peer-to-peer support is vital. It is probably something which they cannot access anywhere else. Unfortunately psychology and mental health services for neuromuscular conditions within the NHS can be difficult to come by, but the care offered by the MD Support Centre, does help to bridge this gap."

Alice Roe, Neuromuscular Clinical Nurse Specialist

Thank you for supporting us. By donating to our #strongerforlonger project, you are helping us to share and spread the impact of our work beyond our own region and make a real difference to the lives of people with muscular dystrophy.