I was diagnosed with MS in 2003. Since then I have had some horrendous care (or rather non-care) from healthcare professionals.
I have also had some fantastic care where I have been listened to and treated as a person rather than as a patient. They see how MS affects everything I do and have done all they can to help me to live my life as fully as possible.
My first "My MS, My Needs"
In 2012, I got a questionnaire from the MS Society about the treatments, services and support I needed for my MS. There were questions about access to medicines, care and support, financial security, and physical and mental wellbeing.
Not always getting the care I have needed has been pretty hard at times, so I decided to fill in the survey. 10,529 other people filled it in too, and it seems many of them had similar experiences to me.
Why the MS Society need to know our needs
Everyone's MS and the help they may need is different. People in some parts of the country find it harder, sometimes impossible to get the support and services they need – the so-called “postcode lottery”. The results from the questionnaire give a clear idea of what’s happening across the UK.
I know from experience how our views shape the work the MS Society does. The information from the questionnaire is used to highlight what’s going well for people with MS and informs future campaigns.
What I hope the survey helps change
I could be offered disease-modifying therapies, which research shows can help slow progression in relapsing remitting MS. I could get better access to mental health services when I need them. I could get financial help to support day-to-day living.
If these services could change for me, it would enhance my quality of life.
My role on the steering group
As a member of the MS Society’s Research Network, I was given the chance to be on the steering group for the next stage of the “My MS, My Needs” project.Our unique experiences of living with MS are used to help design a follow-up questionnaire for 2016, as well as design campaigns and take things further on behalf of people affected by MS.
A new questionnaire has just been sent out. This will identify how things have changed and what still needs to be done. Life with MS can be hard, but not getting the treatment or support I need makes things even more difficult.
If we can share our experiences, they can be used to campaign, shape and guide services in the future.
The My MS, My Needs survey is not the only way you can get involved and help us make a difference for people affected by MS.