Reasonable Adjustments Request

Hi There my MPN Family, i am hoping you can give me some of your outstanding advice.

I have E.T. my platelets now stand at 914 and my consultant has prepared me that at my next appointment in May, i will probably need to start on Hydroxy. Im just wondering if any of you have asked for reasonable adjustments to be made to your job description or working hours and what response you got?

Up to now i have been very lucky and only suffered from the fatigue that we all suffer from. As my counts raise, i now feel more fatigued, have joint pains, occasional silent migrains and since the mention of medication my mood has dropped significantly. I am going to ask to stop doing night shifts as this makes me feel so much worse and also my appetite goes so that i can only eat 2 slices of toast each day i am on nights, and find it difficult to turn my body clock back round to day shifts again.

Also, i am going to ask to stop doing "late" shifts as i become totally isolated and dont see anyone before or after a shift. I can go a whole week without seeing my daughter and grandsons who are my only support/distraction ( i am single and live alone). This has a negative impact on my mental health and actually makes me dwell on my illness.

Im just wondering if these are "reasonable" reasons for asking for changes? I know that we all "just carry on" where possible, but i think its come to the point that i have to think of my own physical and mental health (i actually work in mental health)

I feel embarassed to ask for this help from my employer and am dreading the actual meeting.

Any comments or advice greatfully recieved.

Thanks. Jeanie

24 Replies

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  • HI Jeanie, I am a shift worker. I work 32hrs a week. I also do night duty! I have had ET now for 2 years! I haven't felt the need to cut down working hours. My platelets were 970 but have since gone down to 605. I have no symptoms of ET. Yes I get tired, but I do not call it fatigue!

    I believe a good diet and lots of exercise keeps me strong. By the way I am 65 and only on aspirin. Hang in there. Lyn NZ

  • Wow, how did your platelets drop like that with no Hydroxy?

  • At the time I was highly stressed with a personal problems which triggered palpitations, ended up in ED. Since problem ceased, I became more relaxed with life, and found my platelet's çame down! No more stress!! Haha probably easy said than done!!

  • you could get some employment advice before u talk to yr employer, so that u know where u stand legally. try the CAB if u don't want to go to a local lawyer - i take it u don't belong to a union?

  • Hi Jeanie I read your post with interest as I have felt like you so many times. I too work and go through phases of I can't do this anymore. I was initially diagnosed in 2011 with ET Jak+. I can't wait to retire as I feel so much better when I'm not at work, I think this is because the pressure of work, commuting, ect is lifted. I am 58 and take 2x500 hydroxy daily along with aspirin. I have found my employer very supportive, I have now reduced my hours to 32 a week and I am allowed to work from home one day a week. However, I still find it a challenge when the dreaded fatigue kicks in and all it takes is a few broken nights sleep and I panic I'm gonna be a wrung out dish rag at work. I am in a union but to be fair I haven't needed to use them. It wouldn't do any harm to have the conversation with your manager, explaining how you are struggling, you may not get everything you want but you might be able to reach a compromise. I do hope things improve for you. Best wishes.

  • Hey Jeanie... :)

    I just wanted to lend you a little support... I am not working and I was previously studying full-time at uni when I was diagnosed (originally w/ ET - May 2016). Since then I have been reclassified as MF, and my platelets are still responding poorly, last bloods 945.

    I am exercising, when the weather allows. I only have one meal in the evenings because I also have a loss of appetite overall, and I have had some splenic enlargement...

    From what you have described Jeanie... it does sound like you need some contact with other folk. Naturally, MPN Voice is one great place to mingle, but it is only a virtual replacement, and you sound like you need some socialising, if you do not mind my observation to say so...?

    I am now trying to return to study, but I am already struggling a little at the present...

    Best wishes

    Steve

    (Sydney)

  • A major question is are you a member of a union as they could guide you through the meeting with your employer.

    Under the Disability Discrimination Act, DDA, your employer has to make any reasonable adjustments that are feasible. You have the basis in your post of what you think is reasonable but you may also wish to add into your discussion that it is possible that you may need to attend your GP/hospital more and that you may have to take more time off work due to illness than your company policy generally allows before it takes disciplinary action.

    Depending upon the type of job you do they may have to make adjustments to your work station or provide access to an area if you become fatigued.

    Good luck, have a read of the DDA, especially the reasonable adjustments section so that you know how to guide your employer as they may not be fully aware of their obligations.

    Gerard

  • Hello Jeanie, I can understand your anxieties about asking your employer for help in changing your work pattern, but as your current work pattern is obviously affecting you and causing you to be distressed you really should speak to them, this advice on our website might help you,

    mpnvoice.org.uk/living-with...

    maybe even print it out and take it with you, and also ask them to look at our website mpnvoice.org.uk. It might also help you to have a buddy to talk to, a buddy is someone who has the same MPN as you and takes the same medication so can help you with advice and support from the perspective of someone who really does understand how you are feeling, if you would like more details please email me at maz.cd@mpnvoice.org.uk. Let us know how you get on. Best wishes, Maz

  • When I was diagnosed with E.T. 12 years ago, (I was 54) I was working as a teaching assistant with a class of 10-11 year old children and also doing all the other duties that have to be done in a primary school. After a while, I cut down on the duties as I felt that I did not have the energy to support the children as well as I would have liked.

    I did get a lot of support from my head teacher and other staff, I had been in the school for 25 years and was very happy. However, I decided to leave after a year. It was the best decision for me.

    I hope you can adjust your life style as you would like it.

    wishing you all the best

  • Thankyou all for your replies. I am in a union and am in the process of finding the right rep to speak to who has expertise on care work. as i said i work in mental health which is very stressful so when a large part of my rota is late or night shifts, i have no opportunity to "unwind" or "off load" or just "be normal" with anyone. There is no opportunity to work from home, and however i try to restructure my out goings, i cant afford to cut my hours. I just soldier on and because i dont look ill, have very little understanding from my colleagues. I have told a lot of them now about my illness, but to be honest people who come in with a hangover have much more sympathy.

    I am really grateful for your replies, it helps to get different perspectives on things. I think i will get in touch with the Occupational Health nurse and carry on trying to speak to the union.

    Thanks again

    Jeanie. X

  • Hi Jeanie, I was diagnosed with ET last year & like you have carried on working 50 hour weeks & driving 700 miles a week. I've finally been signed off for 2 weeks to get some rest & recover. My employer has been good however, like you worried about the outcome of the meeting I will be calling when I return. My line Manager sees me as normal & can't understand why I've been signed off. I will be talking to them about my limitations with fatigue and don't want to have unreasonable requests of reducing hours to my contracted hours.

    Work is important both financially & for a stable routine, however I do believe it has to enhance life not stress you further. It's about the balance. I do so hope you find a way through the cloudy days to find the sunshine.

    Take care Theresa

  • if u r paying union dues and yr employer recognises the union then don't hesitate, the union is there precisely for situation such as this, and it needs to step up to the plate not fanny around being unclear which adviser to give you!

  • Hi Jeannie

    I know how you feel & your kind of work must be particularly hard with this condition, I find I'm much worse after earlies/lates & lack of normal sleep

    It won't help that you're not seeing people, at normal times, I think this is a very psychological illness as well!

    I was supposed to start on interferon this year but then the dr changed his mind & it put me in a complete spin!

    I have started some counselling which really helps through my doctor

    I'm in the same position re work, thinking about changing my hours

    ET is covered by the disabilities act which means they have to make reasonable adjustments which won't cost them anything, as I understand it

    Make sure you tell the rep that as my company have put it on my file, it seems to be important & there is further information on ACAS website

    It's important to say you want to work, you just need some help

    Good luck, thinking of you

    Melanie

  • HI Jeanie, My daughter is 20 and was diagnosed at 15 with ET, she started out with aspirin for 2 years and ended up with a huge ulcer, she was an avid soccer goalie and had to be taken off the team, could not risk her being kicked and spleen rupturing. She is now on hydroxyl and has been for over a year, she started out at 2000mg and her platlets went to low, she is now adjusted to 1200 mg she has chronic joint paint. She now has ET and PV together which is double fatigue and pain. She had jobs but just couldn't do it. She sleeps a lot, she has good days and bad days. she sees her oncologist every other month and does blood work every other week, due to the chance of stroke when platlets are high. she too gets headaches and they say that is blood clots bursting in your head, hers are at the back of the head. she knows when her platlets are high, she feels the difference. she has a lot of good days and takes advantage of that. asking for shorter hours or shift change is not un reasonable due to the situation. Hope all turns out good with you.

  • *UPDATE*

    Thankyou all for your moral support which made me more confidant when i saw my manager today.

    She was very understanding when i spoke to her, especially about my concerns of isolation. She said she wanted to support me to carry on working as long as possible and we compromised on certain changes to my contracted hours. I now only have to do 3 night shifts when they come around, not 4 or have to make up my hours with a day shift tagged onto the end. I can do 3 early shifts a week and they will make a "special" late shift which means i can start earlier so i dont have to finish at 9.30 pm. Also she has arranged for me to have regular "catch up" meetings where i can be honest about how i am feeling especially when i begin taking hydroxy.

    All in all, very positive and supportive and i feel my issues were taken very seriously. Phew! i was dreading this meeting, but now i feel like a weight has been taken off my shoulders. Maybe taking Hydroxy wont be as scary either.

    Thankyou all for taking the time to reply to me. I may not post very often but i read this site every single day.

    Cheers. Jeanie. X

  • HI my husband has pv he seen the occupational health nurse at work she said your company have to make reasonable adjustments under the mcmillan.

    My husband travels an hour to get to work the travelling was really getting to him, so now he works from home on a Friday he gets loads more done, so it benefits the company.

    I couldn't imagine having to work nights my husband is shattered by 9pm.

    Good luck

  • Hi tracey, I also have an hour travelling each way due to using public transport (even though i live a 10 min car journey away but i dont drive). Later in the evenings the buses dont run as regularly so i just have to get one that goes in my general direction and walk about a mile in the dark, getting home at 10.45pm after finishing work at 9.30. This is why my employer is now allowing me to finish earlier on "late" shifts.

    I cant work from home as i work in an eating disorders clinic which can at times be very stressful but i think that the adjustments that my employer has worked out with me will give me a balance with rest and home life.

    Im hoping to carry on working as long as possible, just have to wait and see how the dreaded Hydroxy affects me when i have to start taking it in May.

    Thanks

    Jeanie

  • Don't worry about hydroxy my husband has been on it for 1.5 years he was dreading it. He's been great on it.

    He takes it at 6pm this way he's not noticed any side effects at all.

    He's 45 now so still got a few years to work.

    He drives to work as there's no public transport in the area where he works.

    Tracey

  • I chose to work part time, nothing to do with my job, it was my choice. I have ET Jak2 neg and I'm on 3 chemo tablets a day and my platelets are 468. I read that a lot of you are only on 1 aspirin a day and your platelets are much higher than mine!

    Your employer should take into account any requests made by you to "differ" or "alter" your working hours, conditions and environment to suit you under the Disability Act.

    Once I chose to go part time, my GP wrote a letter (as requested by my employer and with my authority) setting out the basic conditions of my disease and why she feels it imperative I reduce my working week. Even without this letter, an employer is legally bound to consider any request made by an employee to change their hours etc.

  • Hey Forwardocho

    Im going to see how i go on with my revised contract, i may have to meet with my manager again and change things further if it it doesnt help. I would love to work part time but i just cant afford to cut my hours, not even by one day per week, and its just "normal" bills, no car, no credit cards, its just that im single and responsible for everything. There may come a time when i just cant cope with the stress of my job and getting up at 5am along with the side effects of my illness and/or any side effects of medication. Thats when i will have to consider giving up work altogether.

    By the way, i have E.T Jak+ my platelets were 914 in February and i take asprin only at the minute. Thats probably going to change in May when i go back to see the consultant, he's prepared me for going on Hydroxy.

    Thanks for your reply

    Jeanie

  • Hi Jeanie, I have ET diagnosed January this year. Started on hydroxy which didn't agree with me, now on anagrelide and aspirin. I work 37 hrs a week. I had to see occ health last month, just to make sure I was ok at work. Occ health sent my employer a letter explaining fatigue and platelet levels. My manager has said if I feel unwell say. This week I haven't felt well, silly really, I should listen to my body, I've pushed myself at work. Ended up yesterday being sent home feeling awful. Work have offered to cut my hrs to 30, until I feel up to doing the full 37 again, but worried about money, bills etc. Hope everything goes OK with your revised contract x

  • Hi linphy,

    Im guilty of the same thing, soldiering on when im not 100%. I do listen to my body, but im afraid i have to ignore it most of the time purely for financial reasons like you. Then when im off, i just rest to recouperate ready for the next lot of shifts. What else can we do? I dont get company sick pay. We are both in the same rocky boat! Ha! lets put the sails up and float off!

    Take care of yourself and thanks for your reply.

    Jeanie. x

  • Hi Jeanie, let me know how get one with work. Take care

    Linphy x

  • Hi there. I am in Canada but here is my advice. Only involve things that can affect you on the job. I am trying to get modification of my job to work from home 2 days a week. I was warned that I shouldn't use transportation or any fatigue outside of the work day as the employer is not responsible for that time. Focus on getting your specialist to recommend what you want, i.e., day shifts etc. due to extreme fatigue. If you have an occupational health dept. go through them and also an outside support for advice helps.

    Let me know how it goes.

    dj

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