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Working with MS

Hi All,

I am struggling in work (like most people) and have been for 18 months. I asked my employers to reduce my hours and to get someone in to help me as I work on my own but they have not been very helpful (even saying that I shouldnt be this tired and that its because im fat!) and it has now resulted in me being signed off sick. With being off work my pains have reduced a lot and I am assuming this is down to less stress as my job is very pressurised. Long and short of it anyway - how does this compare to your stories? Does stress bring on more symptoms? What decisions did you make with regards to your work/home life balance? Just interested to see other peoples opinions.

Thanks for taking the time to read my post and (hopefully) responding.

hi helen i’m a passionate advocate of the benefits of avoiding stress, so being away from stress will have made your symptoms ease. however your employers are showing blatant disregard for the law. under law they must make reasonable adjustments. how dare they bring your weight into it! get legal advice, don’t resign until you have that. meanwhile get lots of rest and calm yourself down. carole x

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Definitely get legal advice. Yes they have to make ‘reasonable’ adjustments but from my experience (NHS) each company has their own idea of what is reasonable. You have to fight your own corner and hopefully get help from experts. I’ve just put in a request to take a further reduction in hours. I was working 37.5pw before diagnosis. Then went down to 30pw. Now i’m asking to go down to 22.5pw. Keep losing money from my wages and because i’m not ‘sick’ enough I can’t get any help from anywhere to make up the difference. MS SUCKS! Juls

You don’t say what your job actually is. If you are on your feet a lot and the pain is your knees or ankles, it may be losing weight would help. But i dn’t know, you didn’t really give us a full picture.

It may just be that its fatigue and that is a bummer and you need to maybe give them a leaflet from the MS Society and explain, nope this isn’t Helen feeling a bit tired…oh noooooo, fatigue is another thing entirely!!! Maybe they can jobshare the position?

you have to become pro-active. You have to work out the financial implications of reducing your hours etc You have to familiarise yourself with your rights as an employee with a disability. If you are uncertain get legal advice from a solicitor who deals with employment(disability) issues. and remember your employer is just that - he/she is not your friend.

Thank you for all your responses :slight_smile: I have been in my office based job for 10 years and its a family business (not my family) and as much as I love it I just wonder if the time has come to go. I have a 7 year old son and a husband who has to do everything including working 5 - 6 days a week. I feel for them as I never see them as I sleep all weekend just so I can work during the week. Its only now that the poop has hit the fan that my employers have actually taken notice and started to put plans into action but in all honesty I wonder if its too little too late as I am at my wits end and totally done in. I am sure I am not the only person who has gone through this sadly.

I work for a large public organisation, I asked in writing over three weeks ago if I could claim under the hospital appointment policy for a newly diagnosed day that is coming up. Still waiting to hear, been told by hr they are looking into it. We can claim a maximum of 3hrs for hospital appointments - I explained that whilst not strictly a hospital appointment it was to provide support and information for a lifelong medical condition and the invite was via my hospital consultant and medical staff are giving the talks. I find the whole thing frustrating, I mean how hard can it be to answer the question? And aren’t hr meant to know the hr policies? I’ve had my oh interrogation and still waiting to see what will fall out of that. I’ve had very little time off sick since I’ve worked in the organisation. Makes you think you get penalised for trying and they only appear to take action when you go off sick. So to answer your questions, yes you are unfortunately not alone, yes I’ve found when I’m under pressure I get the numb patches and burning sensations, which subside when I’m not as stressed. I’m slightly over weight and I have found that when I was slimmer I tired less easily, but having said that, I’m not aware that there is a connection between ms and weight. But it isn’t appropriate the way they have said this to you. Have you tried contacting anyone for advice? MS Society or citizen’s advice or Acas. Good luck.

Your employers are acting completely out of order. Definitely take advice. I had a management position in a large organisation before I was diagnosed. On the same day as my diagnosis my neurologist advised me to avoid stress so I made the big decision to step down from my management position and take a more junior role. And oh how glad I am, BEST decision ever. I work 9-5 and leave the hard part to my new boss. I also meditate daily to help my stress and fatigue levels. Unfortunately with Ms you have to make some changes to your life and these changes are not always easy but ultimately helpful in the long run. Good luck with whatever you decide. Lisa x

Why are some employers so unprofessional! I had a relapse 10months ago and another 2months ago and am still off sick. I haven’t heard from my employer apart from the form they sent me when ssp ran out. I’m told don’t resign make them jump through hoops, but doesn’t look like they’re bothered and it’s a nuisance having to keep getting ‘fit’ notes from the doctor. Definitely don’t let them away with being derogatory and not following the law. But yes I know stress has a huge impact on MS. xx

OMG.

My employers are the total opposite , they have been brilliant.

they’ve taken me off shift work straight away, found me an office job, stopped me clocking in & out because of the distance to the clocking machine, stopped me changing into works uniform again too far to changing rooms.

Even purchased new office and lab chairs because the office chairs were not suitable, (I thought they were lovely).

They even brought in a councillor who has MS to have a chat with me.

When I asked H&R woman why all the fuss, she explained, it’s the law, we have a duty of care and its as simple as that.

When I recently explained my MS had progressed I was asked if they could any more or if I wanted to work less hours.

My advice to helen75 is get ADVICE because your employer is blatantly breaking the law.

I know it’s been a long time coming, but if it is starting to dawn on your employer that they have some responsibilities and that it is in their interests to help you stay at work, make sure you ride that wave for all it’s worth. It sounds worth summoning up all your resources for a last push to getting some changes made at work that might make it sustainable. If it all comes to nothing then so be it - you’ll have given them every chance to help you stay with them. But if you actually got it to something that worked for you… well, that would be a wonderful achievement.

Alison

Goldfish,Even though they aren’t currently paying you its worth bearing in mind that you are still racking up holiday pay (5.6 weeks a year is legal min but can include bank holidays)whilst employed by them so worth bearing in mind before resigning or giving in easily if they do start trying to dismiss.They will probably have rules about carrying over into next leave year so i would find that out from them and request it either carries over or is paid if it cant be(dont do it verbally by email is best as accepted as evidence in tribunals.)Dependant on their response get onto http://www.acas.org.uk/index.aspx?articleid=1461 for the appropriate advise on this.

Helen 75,The Equality act 2010 is what your employer needs to be aware of and guided by. As a small? family business they probably are not very aware of it or have encountered it before?

I may have dreamt it but think i read recently that Ms is a condition that automatically qualifies you as having the “protected characteristic” of disabled under the act?

This link to the equality commission might be useful Home Page | Equality and Human Rights Commission and they have a helpline to call as well. They should be able to advise you correctly but it is complex so a bit or reading up first will help to understand.

They would only have to comply with such an act and make “reasonable adjustments” etc if they were aware of your condition

so if you haven’t already i would be very clear as to why you are struggling, rather than just the fact you are,if it was me i would do this in email and not delete as this would be accepted as evidence by tribunal if needed.(i would probably also be tempted to report in this your objection to unhelpful and hurtful remarks about your weight at the same time and strongly request such behaviour stops immediately.)

Even if i dreamt the bit about MS automatically giving you a “protected characteristic”? ,you say you have struggled for 18 months and the wording in the act is something along the lines of(off the top of head so don’t quote me!) " if you have a condition which affects your ability to carry out day to day tasks and this has lasted for more than 12 months (or could reasonably be expected it will last for more than12 months) then you are considered to have the protected characteristic of disability"

good luck

You’re quite right.

Equality Act 2010 c 15 Schedule 1 Part 1 Certain medical conditions:

‘6 (1) Cancer, HIV infection and multiple sclerosis are each a disability.’

Lucky us, eh? :slight_smile:

As far as I am aware, this doesn’t change the burden of responsibility on the employer to make ‘reasonable adjustments’ as they would be required to do for any disability, whether it qualified automatically (like MS) or not, and neither does having MS automatically lower the bar above which such ‘adjustments’ are deemed ‘reasonable’ under the Act. But I’ve been out of it for a long time, and there might now be masses of new case law that I don’t know about and that says otherwise. If anyone has more up to date info, please share!

Alison

Helen, you have good advice here regarding the work situation.

When I finally stopped work, the relief was immense. But I’ve had to deal with the mental consequences of suddenly feeling no use to anyone. It was a negative destructive notion. I’ve managed to defeat it by writing on here and trying to be helpful to others. I’ve also started to travel.

Know your beast and be clever with it.

Steve

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Yes it’s correct, I think cancer and HIV are also included ?

I read it on the ACAS site.