I just found out my Aunt was diagnosed with MS. I am in the U.S. and we have patient panels/review boards. Do they have these in the UK for patients or caregivers? It’s so hard being so far away to find out as much as I can for her to support her through all this.
I do not know if there is any direct equivalent, here in the UK. Reviews of what?
If your aunt is interested in getting involved in research, she could start by checking out opportunities sponsored by the MS Society itself (link is to elsewhere on this same website):
BUT, I do not think everyone with MS will necessarily want to get involved in “panels”. It can be a very tiring and debilitating disease, as I’m sure you know, so unless your aunt is actively expressing a wish to get involved, the responsibility may not be something she’d welcome.
There would be no direct benefits to the patient - other than the learning opportunity, and the feeling of helping to shape future research. Somebody won’t gain access to superior treatment or support, simply by joining a panel. It’s not the same as a clinical trial, in which someone might gain access to a cutting-edge drug, and benefit from extra-close monitoring - but in return for the risk of taking a drug that has not yet finished testing.
I don’t know if the UK National Health Service (NHS) has its own specialist patient panels. I’m guessing probably yes, but I don’t know how you get yourself nominated for one. Probably best to approach the consultant, and ask: (a) Is there anything like that? and (b) How do you get on it?
Does your aunt have no relatives or support closer to home? I applaud you for wanting to support her, but I think it’s going to be quite difficult from a long distance, and with a health system that I expect will differ in many ways from your own.
Do you have any reason to think she’s not being properly supported as things stand?