Hi. I have RRMS and have treatment every 4 weeks at a wonderful hospital an hour away from home. My issue is with my employer and some members of staff. There have been whisperings about me taking time off work every month. They think I should have my treatment on my day off, but this is the NHS and it doesn’t work like that. Any overtime I do, I don’t claim for, so as to make up for the time I have my treatment. I know I’m ‘entitled’ to this treatment time, but nothing at my work is done properly. I feel I have to be forever grateful for the time off that I’m actually ‘entitled’ to and that costs me my overtime pay. I’m due to have a procedure in hospital this week with a general anaesthetic (not MS related) and will have to have 2 days off. I’m worrying about the comments I’ll get when I return. I love my job but I’m seriously thinking about leaving. Any advice please or helpful comments would be appreciated. Thank you.
I was incredibly lucky with my health having very few days off and my GP/dentist/optician were close to work.
The nature of my job meant I could have flexitime and it was easy to make up anytime missed. If you are working in a closely knitted team this will be more difficult.
At one time my wife had an eye problem that meant I had to take her to hospital as potentially she would be unable to drive after the examination. This involved me having (a flexi) day off work and she was only away from her job for an hour or so (highly specialist wouldn’t get done if she wasn’t there). What wound her up was a colleague who took a day off to go to the dentist.
There is the rule book and common practice. Some people take days off because they know the rules will allow them so many a year. New owners come in and impose new rules and procedures to tighten things but only succeed in hacking off those who have been behaving sensibly.
It is easier for people to deal with someone who has an acute one off incident than the impact of a chronic condition such as MS.
You may be “entitled” to the time off, but could you ask to be rostered to enable going to your appointment and then enjoying the rest of the day at leisure rather than rushing to and from work?
Well, they sound a rotten lot, I must say.
My understanding of the technical position is the same as yours, by the way, but of course that’s not what you’re writing about here.
I wish I knew what to suggest. My bosses and colleagues were always very kind, so I was very lucky have no experience of the negative and horrid atmosphere you describe. I wish your lot were nicer, but they aren’t, and unless you can prescribe them a mass personality transplant without the option, there probably isn’t much you can do about that.
You say you enjoy your job; is there any prospect of finding a nicer company to work for?
Thank you both for your replies. The problem is I work as a TA in a small school, so I am missed when I’m not there. However, when I am there I work twice as hard as others as I always feel so guilty. Think I need to grow a tougher skin!
You can only do the best you can and not beat yourself up about it.
Different jobs different solutions. If your treatment regime changes you will adapt.
At the moment people at QE Birmingham on Ocrevus are being offered a switch to Kesimpta which is similarly effective but self administered rather than a six monthly infusion.
If you have to change you are allowed to consider the convenience of the allowable options. I chose twice a day tablets because of the difficulty of keeping injectables chilled when travelling in my campervan. Others have problems remembering to take tablets twice a day!
I’m so happy with my treatment, Tysabri, no relapses for 4 years. So I wouldn’t want to change. But then we never know what’s round the corner.
Also, I don’t know about you, but I have found that most people have no knowledge of MS and quite frankly are just not interested. Think this is the root of the problem. 
I understand the feelings of guilt, but I have learned that it does not really help. All you can do is satisfy yourself that you are not taking advantage or abusing the system. If people comment, just ask what they would do in your circumstances (or you could offer to swap circumstances).
Wishing you all the best
Mick
Hi there,
Soz to hear ppl talk about you behind your back at work.
I’m lucky to have a considerate employer who accepts my MS disability.
If I have relapse, like now or have to go for appointments/treatment, I just think of it as sick leave. It is illness albeit long term.
Good luck and best.
Yes, a thicker hide sounds like a good plan.
I’m courting criticism here, and should start by saying that have the privilege to know some mightily impressive schoolteachers, but I can also think of a few who are, shall we say, not exactly the most broad minded, generous-spirited or well-rounded adults in the world, and it does sound as if some of your colleagues fall into that category… 
I wish your work environment were a lot nicer.
Thank you Mogace for your advice. You are quite right. I’ve calmed down a bit today and trying to look at it a bit more rationally. I think I need to stand up for myself a bit more and I will be taking your advice. Thank you. All the best.
Hi muchthesamemuchness. Thank you for your reply. It’s good to hear there are some considerate, compassionate employers and staff. I’m sorry to hear you’re having a relapse. How are you? All the very best.
Hi alison100. I totally agree with you there are some wonderful teachers and school staff out there. Some work at my school. It’s just a small minority who can be very unpleasant. It makes me laugh though when they are teaching the children to be kind and considerate and to think of one another! 
Hi L18,
Thx for the gws. I think it’s a double-dip relapse starting early December; better over Xmas but back around this month.
Still no reponse from MS Team, probably the NHS crisis? No matter: will rehab myself like last time; painkillers + physio. Maybe go back on beta interferon, although had such a bad experience on infusion, idk not sure?
Hope everything goes well for you work wise; contemplating what this year holds for me, work wise tbh.
Best.
Hi muchthesamemuchness. Sorry to hear that. Hope you manage to get some help from your MS team. It’s so difficult to get hold of anyone at the moment. Thank you for yr kind words. Good luck. 
Companies like this give my middle finger an erection!
If you had to go for cancer treatment, would they treat you with the same level of distain?
Unfortunately, many are ignorant of what MS actually is. May I suggest that you mick up some Living with MS literature when next at the infusion appointment and subtly leave copy’s on both your managers desk as well as your HR department.
Good luck
Hello Sp1978. You’ve made my day, I loved yr comment. I do wonder if some of them would moan if I had a day off for my own funeral!
I had been thinking about getting some MS literature for people to read. It’s true, most people do not understand and can’t be bothered to find out about MS.
Thank you and all the best to you.
I have recently been diagnosed and within days of me bing back at wrk and i work for the NHS i was already hearing conversations around (Hows he going to do his job if he is diagnosed) this just shows the utter ignorance of some people. i have raised this higher with HR to protect myself.
do what you need t do and dont worry about others, or try not to they will only come out as the bad apples in the end.
you could tell them a truth which is “I’d swap with them in a heartbeat, you’d probably prefer to work 14 hours a day for 6 days a week for 50 weeks of the year rather than deal with this illness”
I would not wish MS on anyone but sometimes you need to make a strong point of view.
I hope they can find it in themselves to be a little kinder.
All the best
Mick
Hello
Sorry to hear you are having these problems. Try talking to one of your colleagues (pick one that thinks they know it all)! And say ever so friendly you hate having to go for your critical ms treatment, especially when went it effects your working day and possibly causes work for your colleagues, but as they well know the nhs is stretched and you have to take the appointment given. Perhaps they could suggest a solution, you haven’t thought of?
It may make them stop and think……let’s face it they won’t have another solution.
Take care xx
This is a very familiar problem… I’m lucky enough to have virtually no disability at for the time being, but MS is wrecking my life simply because of the impossibility of fitting NHS appointments and “health admin” (eg chasing prescriptions) round work. I’m self-employed, which means I in theory I can do what I want, but in practice I lose large parts of my income (and business reputation) thanks to NHS inflexibility. You know, they write a letter fixing some random date with no prior consultation and then add “failure to attend would cost the NHS £xxx” alongside threats of expulsion if you change your appointment more than once…and I feel like writing back and saying (1) The tone of the letter is more “court summons” than “patient care”, and (2) Attending is costing me £yyyyy.
Given that you do like the job itself, I wonder if you’ve considered confronting your colleagues, as others have suggested. Perhaps spell out to them what MS can entail, what the future might hold for you, and why you need this treatment. Your school may be short staffed but it’s not your fault. And after all, people choose to have children and then go on maternity/paternity leave - probably more days than you are taking - everyone accepts that. You getting the right treatment is actually in everyone’s interest: you are more likely to be off with relapses if you don’t.
It’s horrible to feel people are grumbling behind your back. If you had it out with them, would that feel like too much of a risk?
I’m going onto kesimpta for the time being, partly to avoid constant trips to hospital. But your treatment should really be whatever is best for your health - not for your employer. Either way, far from feeling guilty, you should be proud of yourself. It sounds like you’re doing a really important job, while coping with MS as well. What you really deserve is thanks for helping those children.