Steve lives with secondary progressive MS. He spoke to us about his work with his local group campaigning to get MS services in the area.
There are currently two main MS hubs that people in my area go to, and they’re both quite a distance away.
We’ve been trying to get access to the MRI and get consultant visits at our local hospital, so that people don’t have to travel so far to get to scans or appointments. Our hospital only has one neurological physiotherapist and, as you have to be referred by your GP, it can take months to be seen.
Identifying the problem and building relationships
Having to travel so far certainly hinders people. Right now an MRI scan takes an hour round journey. After getting hospital transport or driving and finding a parking spot, it can quickly become an exhausting day trip. If you can’t get to that hospital, the next nearest place is Stafford which is even further. For other services, such as infusions, it’s another long trip to the neuro centre.
We don’t have the same access to services that people living in the cities nearby have, so we decided to do something to get more local support. When I got involved with the MS Society, we started looking at how to change things because we feel quite isolated here.
The first thing we did was identify the issues and who we needed to contact about them. The MS Society staff have built relationships with the MS nurses and with the hospital administrators, and the hospital management want this to happen, which certainly helps.
Speaking up for people with MS
I’ve contacted our local councillors and the person who runs operations at our local hospital about the issue. We’ve also sent a letter to the consultant at our neurology centre. Our research showed found which services are out there so we had a precedent, and now have their support.
When we found that there were neurologists from the hospital further away who already had clinics at our local hospital for people with other conditions, we were able to suggest that they offer those services to those of us with MS too. Our neurologists are on board we’re now discussing it with the NHS managers.
I think some people worry about having the confidence to speak up in a meeting and approach people like your consultant or hospital.
But, in my experience, I believe that you can do it. For some people it’s easier than others, but once you get involved in the group, you’ll build confidence to be able to start talking to people. And you find that once you start talking to people and get positive responses, your confidence will build even further.
We can make a difference
Having a clear aim helps too – know what you want to achieve. That way when you go to speak to people you know exactly what you are asking for. Our aim was to ensure that there’s fair access to neurological services, which is hard to argue with.
Never feel intimidated, you can have those conversations. And it’s important not to be disheartened, if you’re knocked back, just keep going.
Our campaign is ongoing, but we’re making progress and we’ll keep working on it. We know that people are on our side and feel like we can make a difference.