Sometimes, as a person with MS, it can feel as though your voice isn’t being heard. This is why I was so keen to become a lay member of the MS Trust’s MS Forward View project advisory group Any opportunity to share my opinions about and experiences of MS services, I grab, because so much of the time my opinion doesn’t seem to matter.
Don’t get me wrong, I’ve had awesome care from the nurses and doctors supporting me throughout my treatment, but there have also been times I’ve felt frustrated and a little lost. For instance, there was the time I received contradictory information from different doctors about whether or not I needed a lumbar puncture (not the most fun thing ever, right?) that led to me having a procedure I might not have needed. Moments like this have made me want to scream!
Like I said, I’m so grateful for the help and care I’ve received along the way. But I’d like to see things work smoothly, and to feel that there is a system in place so that individuals with MS know what to expect. Sometimes, the care experienced is so different depending on where in the country you are, or which form of MS you have, and this is why the MS Forward View project is so important. It’s a chance for people with MS all over the country to feedback on their experiences.
There are several ways you can get involved as a person with MS, a carer, or a person currently going through the diagnosis process. First up, the MS Trust is conducting a survey via its current MS awareness campaign, Let’s Make MS Care Fair. By taking the survey, and sharing your opinions and ideas, you’ll help the MS Trust find out exactly how services are working across the UK. Whether you have good, bad, or neutral things to say, your opinions are needed right now.
Secondly, the MS Trust is starting a Facebook forum, which will be a place that people can answer any pressing questions the team might have about your experiences of MS services. It’ll also be a closed community where your ideas and opinions will be heard, and may even impact the future of MS services.
To give you an idea of the sorts of things we’ll be discussing in the Facebook forum, we’re keen to find out about your access to MS nurses, whether or not you’re on a Disease Modifying Drug and if you’ve had any problems accessing the drug you want, and if there are any ways you think your condition could be supported better.
We’re keen to talk about all the big issues, and alongside the official team at the MS Trust, lay members Pia, Caroline, and I, will be on hand too. We’re all excited to impact MS services in any way that we can, and this is a great chance to have your voice heard too. If you’d like, you can find out more and apply to join the lay forum.