Motor Neurone Disease (MND) is a relatively rare condition, affecting around seven in 100,000 people in the UK. It is always fatal and often severely limits what patients can do. However, with the right care, individuals can be helped to make the most of life despite these limitations. Few teams are more dedicated to supporting patients through the final stages of their journey than Swansea Bay's MND team. This commitment was publicly recognized when the team received a Patient Choice Award following nominations from not one, but five of their patients.
Patient Testimonials Highlight Exceptional Support
Vicky Langford, a patient diagnosed with MND a year ago, shared her experience: "I was diagnosed with MND a year ago, and that ended my 38-year full-time career as a midwife in Swansea Bay. The team have attended to my every need over the past year. Every issue I develop is met with a supportive solution. They have supported me throughout the past year and offer an individualized service within the framework of guidelines. In addition, they have supported me through the ill health retirement process."
Another patient who nominated the team said: "They make a very difficult diagnosis easier to endure. They make me feel totally supported throughout the journey." A third added: "The team provide very personalized care and attention, knowing how to bring out the best in patients and carers. Their empathy is outstanding."
Comprehensive Multidisciplinary Clinics
The team runs two monthly multidisciplinary clinics for patients—one in Neath Port Talbot and another in Swansea. Caroline Bidder, Swansea Bay's lead MND care coordinator, explained: "It's a sort of one-stop shop for the patients and their families to be seen by the team. They are reviewed every three months by our neurologist, palliative medicine consultant, respiratory team, dietitian, and speech and language therapist. If they can't get to clinic, or if they need something in between, the team will go out into the community, into their homes. We're there from diagnosis to death. A lot of people have felt that knowing exactly who they need to contact is both reassuring and amazingly supportive—that they are not in this on their own."
Supporting Research and Innovation
Alongside clinical care, the team actively supports new research in MND. Caroline said: "MND is a devastating, relentless disease, and we are trying to ensure that our patients and families have the opportunity to be part of research, both drug and non-drug trials. In South Wales, we are the second highest recruiter into a large UK-based research trial, MND SMART. Patients tell us that being involved in trials like this provides hope and a lasting legacy."
Recognition and Gratitude
Caroline and her team greatly appreciated the Patient Choice nominations from their patients. She said: "It is always a great privilege for us to journey alongside people living with and affected by MND, and we never take for granted the amount of trust and space they make available to us. For people to think about nominating us for this award when they are facing the enormous burdens that MND brings is quite humbling."
Claire Thomas, from Swansea Bay University Health Board, said the award reflected the commitment and care the team brings to their work. She added: "To have received five independent Patient Choice Award nominations is a fantastic achievement and a testament to the positive impact the team has, and the meaningful difference they make to patient experience and outcomes every day. We are incredibly proud to see their dedication, compassion, expertise, and patient-centered approach recognized in this way."
