MND Team with 'outstanding empathy' pick up Swansea Bay Patient Choice award

While it is a relatively rare condition – Motor Neurone Disease (MND) affects around seven in 100,000 people in the UK - it is always fatal and often severely limits what people are able to do.

However, with the right care, people can be helped to get the most out of life in spite of those limitations.

And few are more dedicated to supporting their patients throughout the closing stages of their journey than Swansea Bay’s MND Team – a fact publicly recognised by the team being handed a Patient Choice Award following nominations from not one but five of their patients.

One patient, Vicky Langford, who had been a midwife when she was diagnosed, said: “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. The team have supported me throughout the past year and offer an individualised service within the framework of guidelines.

“In addition, they have supported me through the ill health retirement process.”

Another nominator said: “They’ve helped and supported me for the last four years, going above and beyond when needed. The whole team are at the end of the phone whenever I’ve needed them.”

While a third said: “They make a very difficult diagnosis easier to endure. They make me feel totally supported throughout the journey.”

A further said: “The team provide very personalised care and attention, knowing how to bring out the best in patients and carers. Their empathy is outstanding.”

Caroline Bidder, Swansea Bay’s Lead MND Care Coordinator, said the team provide two, monthly, multidisciplinary clinics for patients, one in Neath Port Talbot and another in Swansea.

She said: “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. This builds trusting relationships because they routinely see the same people, allowing the patient to manage their condition with the people that they know best.

“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.”

Alongside clinical care, the team does its best to support 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 2^nd highest recruiter into a large UK based research trial, MND SMART. Patients tell us that being involved in trials like this provide hope and a lasting legacy.”

The team is there to support the patient, and their family, until the very end.

Caroline said: “We know that, at present, we cannot stop disease progression and that MND is life limiting. All we can do is try our very best to provide patients and their families with a good quality of life and ultimately a good quality death.

“You don't have control over very much in MND, but if you are able to die in the place of your choosing it is of huge comfort.”

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, Assistant Directorate Manager for Medicine, said: “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-centred approach recognised in this way.

“These patient choice awards are a wonderful reflection of the commitment and care the team brings to their work, and something that should be wholeheartedly celebrated.”