End the lottery for care and support
What needs to change?
"I feel completely abandoned by services. My consultants are based in Aberdeen, which is a 160 mile round trip from my home. I live alone and have no way of getting there myself, so the only way is an uncomfortable journey by ambulance on a stretcher, as I’m unable to sit in a wheelchair for that length of time.
I haven’t seen either of my consultants for years, so if I have a problem or a question about MS, there’s no-one I can talk to. And although I can’t really afford it, I’m paying for physiotherapy myself, as I can’t speak to rehab services about accessing it through the NHS.
Dependent on the system
I am now reliant on a wheelchair to get around, but I’m having problems with my current wheelchair. The nearest wheelchair service is in Inverness but because I live in Elgin I have to go to the service in Aberdeen. As I can’t get there I can’t get any problems with my wheelchair quickly resolved - I’m dependent on staff from the service coming out to visit me. This means I’m currently having difficulties with routine things like getting cash out of the machine and using my MOTOmed exercise bike.
By nature, I’m a very active person. I do what I can when I can do it. I love getting out to the Moray MS Support Group, which meets once a month in Forres. The people who go are positive and constructive – we all help each other. However, even going to the group can be difficult because I’m reliant on carers getting me up in time to get there. Sometimes I’m not ready until 11am.
I am totally dependent on the system and because I used to be a physio myself, I know how it works.
Calling for change
I want to speak out for what I need and that’s why I am supporting the MS Society Scotland’s Get Loud for MS manifesto.
If services were more flexible, and were available nearer to where I live, it would help me to manage my MS better and greatly improve the quality of my life.