Meet the professionals: Specialist nurses

Specialist nurses work in a wide variety of acute and community settings, specialising in a particular area of practice from mental health to community nursing. The work of a specialist nurse can help to reduce unnecessary hospital admissions and shorten waiting times.

MND specialist nurses usually work in an MND care centre or network, a hospital or a hospice. Their role is to provide ongoing support to people with MND, their families and carers by offering specialist information, practical and emotional support, and guidance on managing the symptoms of MND. They may offer home visits, clinic appointments or a combination of both.

MND specialist nurses work as part of a multidisciplinary team to provide highquality, patient-centred care. They may carry out the person with MND’s initial assessment to establish their needs and put a plan in place, co-ordinating their care with the wider multidisciplinary team.

MND specialist nurses often act as a single point of contact for people with

MND, offering information and advice, and signposting them to other support and services. Some specialist nurses also work with other health professionals, offering education and guidance to increase their understanding of MND.

Kathryn Barber, MND Specialist Nurse and MND Co-ordinator, East Suffolk said: “An important part of my role is to enable patients, giving them choices and some control in what can feel like an otherwise out of control disease progression. At present, the outcome cannot be changed, but symptom control can be improved, quality of life can be the focus, and patients can have an advocate, and therefore continue to have a voice. Honesty is at the heart of my practice which I hope helps those I support to feel listened to and understood, and able to put their trust in me.”

Accessing support from a specialist nurse

The NICE guideline on MND assessment and management recommends that a specialist nurse should be a core member

“Crossing the finish line, I felt extremely proud to be part of such a special event for her and for all the other brave people who’ve had their lives affected by MND.” Garry joined 235 MND Association runners who together raised a record-breaking £700,000 that will help fund our groundbreaking research into MND, as well as co-ordinated care for those living with the condition. Every one of our runners has their own inspiring story for taking on this epic challenge. Thanks to everyone who got up early to line the streets all the way to the finish line to cheer our runners home including members of the South London Branch at mile 21 check point.

If you would like to be part of #TeamMND for the 2024 TCS London Marathon please contact fundraising@mndassociation.org of the MND care team. However, this is not always the case. Ask your MND care team if there is a MND specialist nurse in your area, and how you can link into their support.

Online module for nurses

We have worked with the Royal College of Nursing (RCN) to develop a resource to support nurses in the care of people with MND. This course is designed for registered or student nurses, health care assistants (HCA) or assistant practitioners working in any health care setting or specialism.

It can be accessed at https://rcnlearn. rcn.org.uk/Search/MND-Resource