Mpn advice

[poly2]

Hi all. I'm new to the forum and just wanted to know if i should get a text or letter regarding coronavirus isolation. I have prv jak 2 and portal vein thrombosis and on hydroxycarbamide and warfarin. I've read on bloodwise we should be included as high risk but my employer says if i don't get confirmation i won't get paid. Thanks.

[stevenjust]

Hi it’s so unclear at the moment some people are and others are not. My hosp said I’m vulnerable but didn’t answer my question about the letter, I’m now waiting a call back from my GP. X

[poly2 in reply to stevenjust]

Hi Steven. Yeah the same here. I rang the haematology secretary and she said she couldn't say if i would or not and to ring back on Monday. Also rang the GP but all they could offer was a list of my illness and medication which isn't good enough for employer. Also heard that anyone entitled to a free flu jab will get a text or letter. Just have to sit tight and wait i suppose.

[wendycu]

I asked for a phone call from my doctor, they had a meeting before ringing me, they have put me on the extreme vulnerable list without a letter, they don’t understand why I have received one yet. It is worth ring and arranged a phone call appointment with your doctor.

[poly2 in reply to wendycu]

so many mixed messages.i think i will call the haemotology secretary again tomorrow if i havent heard anything but due to condition and having so many infections in the past i think i will do the 12 weeks anyway .just annoyed if i dont get paid. may i ask what your mpn is please.

[wendycu in reply to poly2]

Hi, you will get paid if not from work, you can apply from the government.

I have E.T & MF, I take hydroxy, Arg & aspirin. B12 injections & the flu jab.

Also fatigue, anemia & enlarged spleen.

My doctor said “some Doctors, specialist and the government will be confused with MPD, some people might not get a letter but it states all blood cancers on the guidelines.”

[poly2 in reply to wendycu]

Thanks for that Wendy. Mine is prv with portal vein thrombosis and enlarged spleen also with fatigue too. If I don't get a text or letter by Monday I will contact the hospital as the GP doesn't recognise it either. My haematologist has told me it's a rare blood cancer and bloodwise has also said it is too. Thanks for your reply.

[wendycu in reply to poly2]

Stay safe x

[tracey13 in reply to poly2]

My husband is post PV MF he's not had a letter as yet or notification.

We just taking it that he's high risk he's working from home so he's safe.

It did say anyone with blood cancers and on immune depressants are high risk.

But it's confusion as there's mixed messages.

Fingers crossed you get paid

Tracey

[SuET2017]

Hi, I’m the same. Unless I get a letter I’m expected to go to work (I work for a nursing home group) even though my employer knows my diagnosis and treatment (ET, pegalated interferon).

I am currently on annual leave and go back on Monday. I can’t say that I am comfortable about going back at all, I get a range of mild infections all the time, but also don’t want to loose my job.

I’ve never let this MPN change my life and have continued more or less as I always have, but this is so unclear and, to be honest, I am not feeling protected by the system (whatever/whoever that is) currently.

I tried to call my GP and the receptionist told me they have nothing to do with the letters?

To answer your question I don’t know if we will get letters. There is too much contradictory information.

Take care

[poly2 in reply to SuET2017]

Hi sue. Totally agree with you. My employer knows my situation too. You would think they would have some compassion without having to have a text or letter. Surely there must be someone out there who can help us with this. And with people who are key workers. I will hope we will hear something soon. Take care all and stay safe.

[SuET2017 in reply to poly2]

If I get any clarity or answers I’ll let you know.

I have emailed my employer to offer proof of medical condition (I get copies of all correspondence between consultant and GP) and copy of prescription. We will see if that would be enough for them?

Also, I have offered to work from home if they can set me up.

Anyway......

Take care

[poly2 in reply to SuET2017]

Good idea. I have screen shot the advice from bloodwise regarding mpns included and e mailed it over. I will wait for a reply but if I don't get any joy I will do the same as you. Thanks.

[lavender007 in reply to SuET2017]

Hi Sue,

Does your employer have Occupational health cover ? they should be supportive,with our input they will understand where your concerns come from.Don't go to work if you feel at risk, this is real and everyone needs to think clearly about their lives and indeed future hopes.

If necessary get all the facts and email them to your boss and her line manager. Your fear sounds real and I send you lots of love and support.

Lav007

[SuET2017]

Hi, not sure if you saw the post but another member posted a link where we can register. I have registered, not sure what will happen now but it’s a step that may help.

gov.uk/coronavirus-extremel...