This International Nurses Day, we want to recognise the amazing work that the care advisors we work with do for people in the muscle wasting community. For many in our community, care advisors support them tirelessly in providing holistic care and co-ordinating different health professionals who provide their care to ensure they have the best possible quality of life. We spoke with three care advisors who have nursing backgrounds, to find out about the most rewarding and challenging parts of their role.
Honouring the heart of care: celebrating neuromuscular care advisors this International Nurses Day
Jennifer Dunne, Neuromuscular Nurse Consultant and Neurology Team Lead at the Royal Hospital for Children Glasgow.
“The most reward part of my job is building long-term relationships with patients and their families. Being part of someone’s life journey with a neuromuscular diagnosis, advocating for them, helping them retain dignity and quality of life and seeing even small improvements, such as better symptom control or increased independence can feel deeply meaningful.
“Teaching someone how to manage their condition, use assistive devices or communicate effectively with their care team really makes a difference and being a shoulder to lean on for the whole family is extremely rewarding and humbling.”
“I am very aware that, when we give a diagnosis, we have changed that family’s life journey forever but, with our teams support, we can make that journey fulfilling and meaningful and allow that child to reach their full potential in life.
“The biggest challenge is often the emotional toll. Watching patients lose function over time – especially young ones or those who had previously been active – can be heartbreaking. Nurses have to manage their own emotions while still being a source of strength for others. There’s also the complexity of care which requires sharp clinical skills and close coordination with multidisciplinary teams, but this can be restricted due to lack of resources of funding. Being able to signpost to amazing neuromuscular charities, such as MDUK, for areas of support makes this part easier to deal with.”
Stacey Davies, Paediatric Neuromuscular Clinical Nurse Specialist, University Hospital Llandough.
“I enjoy working closely with patients and their families to help provide them with help and support, to ensure they have everything they need to lead as normal a life as possible. I also enjoy working with health, social and education departments to help them understand neuromuscular conditions and the effect it can have on both the child and parents’ lives.
“At present, the most challenging part of my role, is not being able to provide our patients and families with the much-needed psychological support to help them throughout their journey, although my team and I provide support days for parents to attend, and we complete home visits to patients and their families to talk with us.
“I also offer play sessions to allow a child to have one on one support, and they can talk to me about anything difficult they may not want to say in front of their family.”
Claire Fletcher, Neuromuscular Clinical Nurse Specialist, University Hospital Llandough.
“The most rewarding part of my role is really getting to know patients and building long-term relationships with them and their families, supporting them through every stage of life.
“Being a consistent source of care, guidance, and reassurance in often uncertain times is an incredible privilege.”
“The most challenging aspect is witnessing the emotional and physical toll these conditions can have – not just on individuals, but on their entire support network. Balancing empathy with resilience is a daily part of the job, and it’s what makes this work both profoundly meaningful and deeply human. It’s not always easy, but it’s a reminder of why the work matters.”
Thank you to all the care advisors who support people living with muscle wasting conditions and their families. The work you do is invaluable to our community.
