Just a moan really - but please send some sympathy, beccause I need it. At the end of August, I applied to be a patient representative for the National Institute for Health Research (NIHR). This is the NHS body that doles out research money and they like to have some non-medical people having a say, or at least giving a non-medical viewpoint. I filled out the (long) application form and then was very excited on Monday when I heard I’d been shortlisted for interview. But when I looked at the interview time, it clashed with my next neuro appointment.
I really, really need to talk to my neuro. I’ve been struggling lately - my walking is just terrible. I’m worrying about whether I should swap Clonazepam for another anti-twitch drug, because Clonazepam increases your risk of Alzheimer’s if you’re on it for longer than a few days (I’ve been on it for years). I’m wondering if I could come off Fampyra because I don’t think it’s helping me now, but I’m not sure - I could be even worse without the Fampyra. I know the Fampyra gives me insomnia and the Clonazepam counteracts this. I’m also dithering about whether to have a urodynamic test, to see whether somthing would work better than Regurin for my intermittantly poor bladder control. Anyway, you can see it’s all complicated and I really need advice from my neuro and want to get it soon.
So I contacted the NIHR and said I couldn’t make that interview time and could they see me later in the day or on a different day. Of course they said no, because that’s how interviews work isn’t it? The interviewers expect the interviewee to show commitment by getting to the interview and if the interviewee can’t or won’t do that, end of story.
I have felt bad and unfairly treated, because a big part of why I got the interview is because I have MS. But when something relating to the MS gets in the way, there’s no accommodation possible. On the bright side, they’re having another interview round in six months and I was told that I’ll be straight through to interviews that time, without having to apply again. Of course, my next neuro appointment will be around then too, but hopefully I won’t be so desperate to see him by that time and I’ll be able to postpone the appointment with him if the two things clash again…
Thank you for reading my moan.