Disability discrimination? Or just normal behaviour?

Hi all

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.


i wouldn’t like to get into the discrimation debate…

i would say its a basic stupidity on their part!


afraid i am with elllie on this one , irronnically i aplied for to volenteer for the samaritans , went through the interview was accepted and then was told the dates of the training, I let them know i couldn’t do the paricular training on that date and guess what havent heard from them since, i have had to give up work and try and do some volunteer work and i am afraid it is a hit and miss some are better than others and some could not survive in the real world of work.


This is the real world of work! Or at least the real world of NHS work - the NHS pays the representatives. They make a big thing of reasonable accommodation to not being able to walk and so on. But when you don’t have a horrible degenerative disease, you can postpone any appointment - most of my friends were very surprised that I wouldn’t postpone my neuro appointment. Maybe it is neurotic of me to think my health is going to be affected by whether I get health advice in one month, or in two months time. But I feel as if it will make a difference and as if I’ve already waited too long to talk to him.

1 Like

hiya again

i didnt make myself clear…

i dont think u should rearrange ur appt-for all the reasons u say!

i think its a brill example of uk claiming to be disabled friendly but their actions say otherwise.

life is complicated! however i can see that u were joining this lot to ‘make a difference’ but they have no idea (or want to?) about ur reality!

they cant have it all ways! we have to be flexible in our daily life-so why cant they?

i really hope u find a solution that suits you.


Hi Again

They may come under the umbrella of real work , however my experience with the NHS is they are amateurish at best


I’m surprised that they weren’t willing to rearrange for you. I’m actually a member of a Research for Patient Benefit regional committee, which is part of the NIHR, and they’ve been very accommodating for me and the other patient members on the committee. For example, we had a meeting for the patient members with a couple people from the NIHR. The meeting was going to be in Leeds, but I was very busy so I asked if it could be held in Sheffield where I live, and they were happy to do this. And part of what we’re there for is to assess whether research proposals have considered the needs of any patients that would take part in the research. So if I were you I’d call them back and very politely ask if it could be moved, as the sort of reasonable adjustment that should be made under the Equality Act (though I would get arsey with them, as that could reflect badly on). There’s no harm in asking. But if they don’t, then best of luck for 6 month’s time : )


I already did exactly that. No dice. I then asked if I could be interviewed in a different part of the country, for the post in my area - specifying that I would pay any extra expenses involved in getting to London or wherever. Still no dice.

I think it’s the usual thing with jobs - once you’re working for them, the employer is prepared to accommodate you. But they won’t put themselves out for interviewees, because they don’t even know if they want you. I objected to that because the reason I couldn’t make the interview was very closely bound up with the reason they WANTED me to be interviewed. I was left with the impression that the guy scheduling the interviews lacked empathy and wasn’t very bright.