Things have changed for the better. Is that the case for your neurological condition?

Sarah Joiner – Vice Chair MS Trust.

Sarah Joiner, Vice Chair of the MS Trust and member of The Neurological Alliance #MyNeuroSurvey Steering Group, writes:

I was diagnosed with multiple sclerosis in 1981.   Back then I received care from a consultant and a small medical team.  Hours of waiting all morning, an examination to see how the condition had progressed, and some words of encouragement.  Roll on to 1998: the first disease modifying drugs arrived, and the first MS nurse.  Things were beginning to look up.  Now MS clinics have changed beyond recognition, I think mainly for the better.  Is that the case for your neurological condition? 

Do you have an opinion? I do. I have an opinion on everything.

The Neurological Alliance represents over 80 organisations, including some of the main support groups and organisations for people with specific neuro conditions in the UK, such as the MS Trust. The Alliance runs My Neuro Survey every two years to gain an accurate understanding of people’s experience of neurological care, treatment and diagnosis: what’s good, what’s bad, and how care varies in different areas of the UK.

Our lives are filled with surveys, coming from every direction and covering everything from the teabags we bought yesterday to the dream holiday we’d love to have.  All of them clamouring for our attention and wasting our precious time. But this time the survey’s IMPORTANT!

My Neuro Survey gives those of us with neurological conditions, and those who support us, the opportunity to have our say about the care we have been receiving and what we say will help build better neurological services for the future. The last survey took place in 2018/2019 and life has changed dramatically since then.

If we don’t complete the survey, our voices don’t get heard.  It’s 20 minutes out of your life that will make a difference.  By taking part, you bring us closer to achieving our collective vision of a world where everyone has access to the same high quality, joined up neuro care, whoever they are and wherever they live. So get involved and get your opinion heard.  My favourite part?  The “Any Other Comments” box. 

You can fill out the survey online here or call Quality Health on 0800 783 1775 (Freephone) to request a paper copy (including large print and easy read versions) or to complete the survey over the telephone in 150 languages.  Go on, bet you can’t resist!