Last Thursday, I was lucky enough to be invited to a project based, specialist neuro-physiotherapy session at a hospital some miles away from where I live. I say ‘lucky’, quite genuinely, as I’ve tried to find physios with knowledge of dystonia (privately) and failed. The NHS doesn’t seem to be overly blessed with them either, so to find myself in a room with three, plus a neurologist was wonderful. An added bonus? Two of the people in the room were Botox injectors, with a third in training.
So, a massive opportunity for real, value adding, holistic, patient care.
After a very useful 45 minutes, I walked away with my opinion unchanged, but with one major concern. How long will this programme continue?
I volunteered to be part of this project. And even though it took me nearly six hours on various bits of public transport to get there and back, I’d do it again tomorrow. Dystonia patients need to get involved in any opportunity to make improvements to care. After all, we’re experts in this rare condition. Let’s share the knowledge. If you haven’t already, sign up on a reasearch project and let’s beat this thing.
Want to find out more?
- Talk to your consultant about the possibility of joint initiatives with other outpatient services.
- Join the global dystonia registry via The Dystonia Society website.