Hi everyone, I haven't posted for a while but have been keeping up with everyone's post.
I don't know how I feel at the moment. I recently got called in for a meeting at work about my sickness days over the past year. As you can imagine I felt really angry to think they thought I have been taking the micky with days off. Anyway I spoke to manager who questioned me on all the dates that she had luckily I had prepared and could give a reason for every one of them, the biggest one being my mini stroke right through to being diagnosed with PV. I explained what PV is and how it affects me. Further quizzing followed . It ended with the manager retracting the managers warning but being told I must improve my attendance. This left me feeling really upset . I got my head round what had been said went to work the next day to be questioned by manager again " what is your hospital appointment for" again I explained it's for my treatment . The manager then turned round and said you do know you won't get paid for your hospital appointment unless you pick up an extra shift to make up for it. I was gubbed smacked especially as I was told by previous manager I would get paid. All I could do is cry (not in front of manager) all of this has made me feel misrable and I can't seem to shift the feeling on top of feeling rubbish at the moment because of symptons. It's really knocked me back. Sorry for waffling on just had to get it off my chest to you guys who all understand what it's like to have an MPN.
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Nettie22
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Hi Nettie I'm so sorry to hear about your troubles at work. It's bad enough having an MPN and all the stress associated with it, without having all this extra hassle. Are you a member of a trade union? If so they might be able to help you by representing you at meetings with your managers. If not is there one you could join? Could you get some kind of letter or other documentation from your haemo/GP or whoever to take to work with you? I don't know what other advice to offer.
Hi, I have put an information pack together which includes my hospital letters and an information booklet about mpn's to go in my file at work. Really not sure about a union I will have to look into it. 😊
Hi Nettie, I am so sorry to hear you have been treated like this by your manager, it is very unfair and totally unnecessary. Does your company have a HR department? If so then you should speak to them for their advice and representation at all meetings regarding your time off work. And, you are covered by the Disability at Work Act, as you have a MPN which is classed as cancer, have a look at this information on our website about employee rights and maybe take a copy of it into your manager so that they are aware of the regulations in place and the adjustments they should be making for you. Good luck, Maz
Hi Nettie, it must be difficult trying to juggle your job with bad days and hospital appts and I feel for you coz you seem to have a hard nosed business orientated manager now. I don't know the set up but maybe someone like Human Resource or their manager is breathing fire at them. I used to work in an environment like that and I hated it for its black and white approach to folks situations.
When I was diagnosed I was self employed painter, decorator, odd job guy and simply couldn't carry on as I couldnt lift or climb the heavy ladder sets, paints etc. It was a sad time and i still miss it. So I applaud you for doing your best to hold down your job. Could you afford a job share or reduced hours maybe, not ideal I know.
Maybe you check your rights at the Citizens Advice regarding pay for hospital appts. And take the advice given by Angela. And feel free to get it off your chest when you need to.
So sorry to hear you’re having this trouble at work. I had similar treatment which eventually led to me taking early retirement last year which went down like a lead balloon!
I agree with Maz, you are covered under the Disability Act and they should be offering support, not making you feel like that. When I left my local authority job, I received a letter listing all the ways they had supposedly helped me and not even a thank you for me efforts of keeping going even on days I felt crap!
Ask to see occupational health, they were excellent with me and very much on my side. I know it shouldn’t feel like sides but that’s how mine felt - a battle! My GP was excellent too but he needed to know the fine details of what I actually did in my job so he could match my symptoms to this, eg. A lot of driving, does not agree with fatigue.
My honest advice would be that work is not worth it if it means your health suffers. I don’t know how old you are but if possible, is there an easier job you could do, with less hours or could you retire early due to ill health?
Keep posting updates. Understand totally how you are feeling. E hugs sent, kindest regards Aime xx😺😺😻😻
Thank you Aime ! It's only the manager who seems to have problem. All other staff seem to understand and try to help when needed. I am 46 so possibly a bit young to retire ? . I will try and find out more information . Xx
Hi, I think when you are retiring on I’ll health, age does not count but double check on that. My manager was similar just couldn’t believe I was so fatigued and in pain (I have osteoarthritis also) which counts as a disability also. He kept saying you’ve got to think of your health and then it was - oh council has done a,b and c and we are going to make life more difficult for you by changing vehicles, not allowing annual leave entitlement since you’ve been off so much, etc. I just couldn’t believe their callousness for want of a better word.
I got my full pension 6 years early and everyone told me I looked like a different person once the stress of trying to work was gone. My hubby has retired a year early and we have less money but we’ve got a lot more than money can buy!
Definitely get advice from occupational health, kindest regards Aime xx😺😺
Hi sorry to hear that your work haven't been supportive. As Aime said I was referred to occupational health by my manager for support. They were great, prior to seeing them I was using annual leave and days off for appointments which was very counterproductive with fatigue. Occupational health alongside HR have now adjusted my working hours so I have a set day off middle of the week which helps with the fatigue and have sanctioned me going to all my appointments in work time. I know I am very lucky and really hope you get some better support soon, wishing you all the best x
Hi , I was using annual leave for my appointments until old manager looked into it and told me I would get paid for taking day off for hospital appointments. The new manager has said I have to make the time up otherwise I won't get paid this is because I'm part time. She said if I was full time it would be different. My shift pattern varies 1 week I work 4 shifts the next week 3 this includes every other weekend. I had my hours cut by doctors advice after my mini stroke last year before being told I had pv. I hope it all gets sorted out soon I love my job and the thought of having to give it up upsets me but if they are going to be awkward about I have no choice.
Thank you for your reply I will try to keep everyone updated . Xx
Hi Nettie, you have my sympathy. After reading Maz’s Response it reminded me of someone I used to work with. Because she had MS she was given a lotta assistance at work.
Also if as Maz says we are classed as disabled then you maybe entitled to PIPs( personal Independance payment ). I’m retired so not entitled. It’s a weekly payment allowance that will allow you to get paid help in which ever way you want. Housework, gardening etc.
I know I’ve posted this before but don’t know if anyone has actually managed to claim it.
It would be great if someone could let us all know if they receive it.
hi Nettie, so sorry to hear the the way in which your being treat at work, it’s the last thing you need. I work for the NHS, due to multiple surgeries this year I have had umpteen return to work interviews with my Occ health department (i’ve Triggered the sickness stats) who have been fantastic, in amongst all of this i’ve Been diagnosed with MPN. My manager (who is thankfully fantastic) received a letter from them last week explaining everything that’s going on and in bold letters at the end of the letter has stated that the DIsability discrimination act covers cancers and with it comes entitlements that have to be adhered too. I’m happy to send the quote through to you if it’s any help. Xx
Hi Trocken, thank you for your reply I'm glad you have such a good manager. My partner and I are currently looking at all the information that everyone on here have provided . I love this forum. Xx
I am so sorry Nettie,I hope you get it sorted, working keeps you same, getting p.i.p is not easy my son is on dyalsis and very ill and he is refused each time. I imagine you look well so it is difficult for people to accept how sick we are, like my son, I have been made to feel like I am making it all up. I like most, struggled through. Is there a career you can make for yourself at home. I always find going out for a day, leaving all the shit behind and coming back with a clear head helps rejuvenate and creates new avenues which otherwise would have stayed buried.xxxx Best of luck, what about a solicitor? It may b worth researching
Hi Angelina gaffer, I'm sorry to hear your son is so I'll. I agree getting out and about does help to clear your head. I've been racking my brain for something I can do from home when it's working that is lol. My other half tried contacting a solicitor but didn't hear anything back so we now trying other suggestions that have been made. Xxxx
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Iron deficiency problems
Heat or what ? 
Thought It would be good to give an update
PV at 28
