On Global MND Awareness Day, we spoke to Sam about her role supporting people living with MND and their loved ones and the difference the Rob Burrow Centre for Motor Neurone Disease will make.

Sam Oakes is the Family Support Worker for the Motor Neurone Disease service run by Leeds Teaching Hospitals NHS Trust, currently out of Seacroft Hospital. On Global MND Awareness Day, we spoke to Sam about her role supporting people living with MND and their loved ones and the difference the Rob Burrow Centre for Motor Neurone Disease will make. 


Read more: Donate to the Rob Burrow Centre for Motor Neurone Disease Appeal Today


The purpose of Sam’s role is to support and empower MND patients and those closest to them to make decisions that are right for them. Sam told us:

“Just because someone has an MND diagnosis, it doesn’t make them any less of a person. They could be a person with a career, a person with hopes and dreams and it’s my job to get to know them to support them and their family on their journey with the condition.”

Sam recognises that many people experience feelings of grief at the point of diagnosis, knowing this is an incurable disease. A big part of Sam’s role is supporting patients and families through the emotions they feel throughout their journey with MND.

With funding support from Leeds Hospitals Charity, Sam carries out a variety of memory making activities with MND patients and their loved ones.

Sam with an MND patient at the Leeds MND clinic at Seacroft Hospital

For Sam, it can be the little things make the biggest difference to the experience of the people who visit clinic, like simply providing the best quality warm drink and a biscuit to the patient if they are able to eat and drink and for the people that come with them as a welcome in the waiting room to brighten their day.


Read more: 7 Stories Behind the Scenes


We spoke to Sam about the current MND clinic and the prospect of a bespoke MND centre at Seacroft Hospital, she said:

“The current space we work in is bland and impersonal, it’s just not suitable for the needs of our patients at all. Our patients can find it uncomfortable and distressing coming into clinic, it’s a place where they can be told the most devastating news, and they have nowhere to go and process it and reflect.

“We are such a strong community of patients, families and MND Team members. Our patients are true warriors, they deserve a space where they can come together with respect, dignity and the support of the MND team. The centre will be a ‘home from home’, a safe, dignified space where, as a team, we will be able to be innovative, and individualise and transform the support and care we can provide for patients and their families.”


Read more: Our Tribute to Rob Burrow CBE