Can anyone offer advice how the NHS view MPN and sick leave ?
I know it's 6 months full pay then 6 months half pay.
I had two months off in October-December with coccydinia (tailbone pain) I now know related to overactive bone marrow.
Had usual meeting with management who said would get me a special chair to sit on (never transpired) 🙄
I've been off now for 3 weeks with JAK2 positive ET, however im due BMB next week.
Due to the nature of my role I need to be mentally focused to practice my job safely.I feel until I've had BMB with full results that I could not do this.
I'm awaiting a letter from management next week calling me in. It's their policy if your off for 4 weeks they want to see you.
I took union rep with me for my last absence and will be doing same for this one. I feel I should not be worrying about this and concentrating on getting better.
Thanks again everyone ☺
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Lainy1
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as an ex-NHS manager I would probably ask for an occupational health report. Might be looking for a temp job that u could do if the main reason for your not working is worry over the BMB and diagnosis making u unfit for normal job. Good idea to take union rep.
Hi. I'm an ET sufferer, but also an employment lawyer in my day job. Your MPN means that you are, from the point of diagnosis, classed as disabled for the purposes of the Equality Act 2010, as it is a cancer.
This means that your employer is obliged to make reasonable adjustments to help you overcome and issues that you encounter because of your disability or for reasons related to it. It would be sensible for you or your union clear about this at your next meeting, because as MPNs are relatively rare, HR (who won't be medical experts, despite working for the NHS) may not know this.
You should revisit the chair issue, if the coccydinia is still an issue. In terms of your current absence, then explain about your fatigue and also the impending bone marrow biopsy. If your concentration is an issue, they should try and find ways to accommodate that, but that is likely to consist of ways of helping you work - but maybe on reduced hours etc.
Statistically, they will aim for that, because employees who are out of work for 6 weeks of more are less likely to be able to return to work quickly, and that tails off even more as an employee gets closer to 6 months absence. Trying to assist you back into work is what you should expect and also try to work with them to achieve.
Otherwise, try not to worry about the BMB. I had mine 2 weeks ago. It was "odd". Not too painful, more uncomfortable (and even then, very bearable). I had a nurse talking all the way through, distracting. It doesn't take too long. It is tender for a few days afterwards, but I was back at work the following day.
Hi Lainy1. I can't really offer advise regarding your sick leave but I hope you get your work issues resolved and soon. It's hard enough dealing with our conditions without extra work worries on top if it.
What I would like to ask tho is about your tailbone pain. I have been experiencing this on and off for about 3 weeks now. You mentioned that it is related to overactive bone marrow? I also have ET jak negative but have mpl gene. It feels like every week I have new symptoms and i feel like a hypochondriac 😐also been lightheaded for a week now. I am waiting for a referral to see a rheumatologist since December for all my joint pains but still approx 1 yr waiting list ! So meantime I'm just keeping g a list of all symptoms . My haemotologist says they aren't ET related.
Hope your bmb goes OK. I haven't had one so can't offer any input on that but from reading on this amazing forum like a lot of things the thought of it is worse than the actual event.
Please do not ever feal like a hypocrite as pain and symptoms are/is what the patient says it is.I've had coccydinia (tailbone pain) for 13 months. xray showed sacroilitis too. My gp has said tailbone pain is probably due to overactive bone marrow. I don't work in rheumatology or hematology so don't know how that works, I just believe her.
You mentioned being lightheaded x1 week, that's worrying, I would ask go to monitor bloods again. Are ur H.B levels ok ?
? Inner ear infection. Your GP is best person to investigate this. Could your GP not make urgent referral due to you being Jak2 negative but have the mpl gene.
There is a coxy cushion you can buy that does help tailbone pain.
Hi Lainy. It's just difficult either feeling rubbish or just not quite right all the time. My joint pains started almost 2 years ago and just in my fingers. Now in feet, knees wrists...and now this tailbone pain. Have general achiness round hips , like I've been exercising or for a long walk but haven't.
I haven't been to docs about the lightheadedness. My bloods are always fine except for platelets which is why I'm not on urgent referral for rheumatology. My heamotologist is trying to speed it up after seeing him few wks ago but he couldn't promise that it would push me further up the list. Even urgent referrals have 34 wk waiting list apparently.
I'm off on hols now for easter so hopefully resting will settle the lighthead. If not I'll go to back to gp.
I'll have a look at those cushions. As I said it comes and goes but boy does it hurt when it comes. Feel for you having it that long 😐
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Looking for some advice
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