Power in partnership: Joining the dots of MND care

Don't miss our Motor Neurone Disease Annual Conference 2022 on Friday 16 September 2022 at St Christopher's CARE, in collaboration with Kings College, London.

Our Motor Neurone Disease Annual Conference is back for the first time since 2019. And, more than 30 years on from our first MND conference, it remains a unique event for health and social care professionals, patients and carers.

Run in collaboration with King’s College, London, this year’s event, Power in Partnership; joining the dots of MND care takes place on 16 September. It offers delegates the chance to hear from an outstanding line-up of speakers, including professionals from a range of disciplines as well as the patient perspective, and gives them an opportunity to catch up with colleagues on the very latest developments in the field.

Dr Cathy Ellis, Consultant Neurologist at Kings College Hospital, London and Darent Valley Hospital, who has chaired the conference for more than a decade, said: “What remains unique about this conference is the collaboration with palliative care. It’s really good to bring together professionals from lots of different backgrounds from across the UK and internationally.”

Creating and building a dialogue from a multi-professional approach and with patients and carers is the main feature of this year’s event that Dr Ellis is looking forward to. She says: “This is the first time the partnership with patients has been the focus of the conference. They’ve been responsible for some of the greatest improvements in terms of legislation and it’s so important they and their carers are part of the conversation.”

David Setters, who was diagnosed with MND ten years ago, recognises his disease progression is slow and that’s what drives him to raise awareness, campaign and fundraise.

“Most people don’t get the chance to do it because 50% die within two years of diagnosis,” adds David, who’ll be at the conference representing We are Patients United2endMND and talking specifically about tracheostomy, the procedure some people with MND have to help them overcome respiratory issues and to prolong life.

David sees the conference as the perfect platform for initiating positive, open and transparent conversation between patients and professionals, and for discussing tracheostomy, a procedure that he says some doctors are reluctant to even offer.

David adds: “For health professionals to hear from carers and patients is so important. Some really understand MND. Others out there won’t be quite so aware, and I hope it will help them think twice when having conversations with patients and carers in future, particularly those looking to have an elective tracheostomy.”

Delegates will also get to hear about the very latest technological advances when it comes to prolonging MND patients’ ability to communicate.

Richard Cave is a Speech and Language Therapist (SLT) and PhD candidate at UCL. He works with the MND Association, providing training and practical support for communication technology and voice banking. He’s also working on what promises to be an exciting new project with Google.
He says that while he’s fascinated by technology itself what really interests him is what technology can do to help people with MND.

“From a technical perspective, it’s all about what we can do to alleviate the social isolation people with MND suffer, particularly when they lose the power of speech.”

Richard will be sharing the very latest updates on the project he’s working on with Google and will be looking for people to join a pilot to test this latest speech captioning programmes which he’ll be demonstrating for the first time in public.

“Having been to this conference before I’m really looking forward to getting to hear discussions on subjects I wouldn’t normally be involved in in everyday work. It’s so helpful to hear and meet people from different roles and with different perspectives. Being there in person and having these face to face conversations always leaves me feeling revitalised.”

Whatever your role in caring for people with MND, you won’t want to miss the chance to hear these speakers and several more, or the chance to network with colleagues across disciplines, so you too can revitalise your practice.