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Shaping research in motor neurone disorders

Patient and public involvement (PPI) is a central theme of the government’s agenda for research, and a central tenet of Sheffield Teaching Hospitals’ research strategy. Patients and the public bring a unique and expert perspective to research, helping to ensure it takes account of the patient perspective and its quality is enhanced.

One of Sheffield’s best examples of PPI is the Sheffield Motor Neurone Disorders Advisory Group (SMND RAG) – a 16-strong committee created to bring together patients, carers and members of the public from the Yorkshire region who wish to be actively involved in a member’s panel. The group plays an active role in assisting researchers in ensuring that patients’ and carers’ views and needs are considered within motor neurone disorders research in the city.

The group’s principal aims are to ensure that patient and carer perspectives are heard, and to provide knowledge for researchers from the individual’s experience and contribution. It also works hard to identify and prioritize research topics that are important to patients, and to help improve recruitment to studies, as well as a variety of other functions, all adding value to the research process.

Stan Bedford, 76, joined the committee after his wife sadly died in 2010 following a two-year battle with motor neurone disease (MND). For Stan, it is this experience of caring for his wife in such difficult times that drives him to help shape the healthcare of the future.

Stan said: “Seeing the impact MND had on my wife drove home what a terrible disease it is and what a great challenge doctors and carers face in helping people with it. My wife started tripping over, and eventually needed a feeding tube in her stomach and a breathing machine. There was no medication to help her.

“I knew nothing about research into MND at the time, but staff at the Royal Hallamshire Hospital mentioned that we have an active group of researchers here in Sheffield looking into the disease, and asked if I wanted to join the SMND RAG group. Of course, I accepted, as I wanted to give something back.

“Since I joined I’ve really felt that my views have been taken on board and have been built into research proposals. I’ve been involved in some very interesting projects, such as research trialling a neck collar offering head support to people with MND. All in all it’s a very rewarding experience.”

Sarah Wyatt, 40, joined the group soon before her father passed away last year aged 69, after also suffering from MND for two years. Sarah saw the group advertised on the internet and told her father she had joined to help people like him in the future.

Sarah said: “My dad was really fit and well before MND took hold – it was a real shock. Of course all the family rallied round and helped to care for him, but it was really difficult to see him so ill.

“I thought joining the group would be a great way to do some good for other patients and carers – I’m not a runner so I thought I’d do something else voluntarily! It’s been a really great group to be a part of – I’ve learnt a lot about research and am inspired to see the research that’s coming through. The researchers really do take on board what we say.

“We’re a long way off preventing or curing MND, but there’s progress. I’ve already seen one drug come through that wasn’t there before.

“It’d be great to see more patients, carers or members of the public join the group.”

The committee is looking for people to attend Sheffield based meetings up to four times a year and who would be willing to be contacted intermittently throughout the year to review documents. All reasonable travel expenses will be paid for and lunch will be provided. There will be access to relevant training courses and mentoring.

If you are interested in becoming a member of SMND RAG and require further information please contact: Hannah Hollinger on 0114 222 2265 or at H.Hollinger@sheffield.ac.uk.