Sarah Rees is a member of our Research Network. She caught up with researcher and occupational therapist Colette Beecher (pictured above) to find out how her experiences with an MS treatment called HSCT inspired her PhD project.
While all researchers are passionate about their work, Colette Beecher has a special connection to hers. She's researching the experiences of people with MS who undergo haematopoietic stem cell transplantation (HSCT) – a procedure she underwent herself in 2016.
“I was diagnosed with MS in 2011. I started on a treatment called Avonex, a beta interferon. Although my symptoms didn’t progress very quickly, I soon noticed I was falling into a pattern of two relapses a year. That’s when I began to think seriously about HSCT” she explains. “My neurologist confirmed that I met the strict eligibility criteria. I understood the risks associated with it. So I decided to do it.”
She was incredibly fortunate. “I had hardly any side effects during the treatment. I still experience some of the old symptoms I had before HSCT, like numbness, but I haven’t had any new MS symptoms since.”
Supporting people through HSCT
Colette has nothing but praise for the care and treatment she received, but felt she hadn’t been properly prepared for the psychological aspect. Online forums and social media showed her she wasn’t alone in facing psychological stress during HSCT, yet there was no structured support.
Recognising she was in a position to help, Colette decided to help find a solution. She has worked as an occupational therapist (OT) specialising in neurological conditions, including MS, for over two decades and is a qualified OT lecturer at Sheffield Hallam University. A PhD was a logical next step. Professional qualifications aside, Colette is also a woman driven to help. She aspired to be an OT from 14, and says she loves “being able to play a part in improving the quality of life for people and making a difference.”
This research project will certainly do that. Colette will follow a group of people with MS for a year, interviewing them at specific stages of their HSCT journey to gain an insight into their experience. “If we can better understand the psychological impact of the treatment, we can start to design appropriate ways to support people through it.”
Looking at the long-term
Having MS herself – and having undergone HSCT – makes it easy for Colette to relate to her participants. She is hopeful that her research will be able to help people undergoing HSCT.
“After this research project is done, I’d like to do a follow up, two years after HSCT, to monitor the long-term psycho-social experience of the treatment” she says. “The more we understand about it, the better we can make the care and support for people with MS.”
HSCT and coronavirus
HSCT has a big effect on your immune system for a period of time. If you’re considering HSCT treatment, read our medical advisers’ statement about MS treatments and coronavirus.
This blog first appeared as an article in our Research Matters magazine. You can download the full issue of Research Matters for free. To get a copy by post please contact [email protected] to subscribe.