Not always getting the care that I’ve needed has been pretty hard at times, so I was really interested in the results of the My MS, My Needs survey.
The survey aimed to find out more about access to treatment, care and support among people with MS.
Access to treatment
What stood out for me was the mixed access to disease modifying therapies (DMTs) and how few people had a care plan. I was also surprised, and saddened, by how few people felt they'd received enough emotional support.
I’m one of those people who’s not on any treatment. It shouldn’t depend on where you live or who your consultant is, getting access to the right treatment and information is vital for getting on with our lives.
I also can’t believe that an amazing 11,024 people responded to the questionnaire - thank you! That meant there were lots of numbers to get our heads around and showed that there’s a real need for this survey.
Affecting our lives
I was invited to talk at the MS Society headquarters about what the results actually mean to people with MS and how the issues really affect our lives. I know from experience how our views can shape the work that the MS Society does.
Staff were very positive, saying it really helped them to hear from people living with MS. They said it puts the data into perspective and helps them to understand the reality of living with MS.
My MS, My Needs
Life with MS can be hard and everyone’s needs are different. But by sharing our experiences we can help to shape services in the future. This means each of us living with MS will be listened to and helped when we say “this is my MS, these are my needs”.
Carole Bennett has had relapsing remitting MS for around 13 years. She was a young carer for her mum, who had primary progressive MS, and has been a volunteer with the MS Society Research Network since finishing work.