Hi, I have ET Jak2 and am on Hydroxycarbamide and Clopidogrel. I am still confused. Have not had a letter to say have to isolate for 12 weeks. Anyone else still like me and not been advised? I am still awaiting what will be a tele consultation with haemotologist to verify. I have not rung him as I know they are very busy.
Letter from Government/GP???: Hi, I have ET Jak... - MPN Voice
Letter from Government/GP???
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Jennytheb
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Yes, also have ET, on hydroxy and aspirin and haven’t received a letter.
I am honestly not affected by this, as in my case my husband has a Shielding letter and this gives us access to online shopping. This has to be the one thing that worried me, shopping with the public. I am sensible, going for a walk late in the evening, crossing the road when I have to etc. I wear surgical gloves to handle the post and with the shopping and wash any tins and packaging down too.
I know some people need these letters for work to get paid, so totally understand the importance of that too. But for me, I won’t be chasing it up.
Mary x
Hi Jennytheb, I rung my gp yesterday as I had not received my letter. When I spoke to receptionist she told me it wasn't the gp surgeries that gave them out. Receptionist asked if I'd like to speak to gp so she can explain to me. Later yesterday afternoon my gp rang me, straight away she said you haven't received a letter and I should of. She said she'd get it out in the post for me. I have been worrying as my work have asked if I have received one.
Can you ring your gp surgery
Take care, stay safe
I rang my GP's this week.
My main concern is having evidence for work if/when they start to ask us to go back into the office should restrictions lift next month.
The GP's looked into it and came back and said yes i should have received one and are arranging it for me.
Clearly a lot of people still overlooked.
Hi, letter has arrived which explains staying home for next 12 weeks from date of letter. I feel I can relax a bit now letter has arrived, been worried as work have been on to me
Linda
Was your letter dated? Mine was signed by my GP but no date. Not that it really matters, as we are in this for the long haul, but there's no clarity about who is responsible for this, and how long does it take to get letters to everyone?
Letter is dated 17th April, has surgery heading name and address
So some letters are from the hospital, some from the surgery, some are dated, some are not, some give a phone number or code to get slots online and some don't. I also got a letter from Boris yesterday telling me to stay at home blah blah blah. Some letters went to the wrong address (in Wales). WTF!
Yip no letter here but I'm pestering every Scottish MP and MSP. Watch this space.
Hi I’m on same drugs as you and received letter on Thursday - 12 weeks from date of letter so 8th July. I must admit I found it quite an unwelcome shock - don’t know why as I had been shielding but it just brings hone our vulnerability. On a positive the next day I received a govt food parcel. Take care. Jx
Thank you for your post Jlah, I too had hoped that wouldn't be like this but I suppose it is in our interests to stay away. Did you have to apply for the food delivery or did it just arrive please.
Jenny
I don’t want to downplay the risks but we have been advised that we are no more at risk of catching the virus than anybody else. It’s just that it would be much more dangerous for us if we were hospitalised. 🌈
in reply to Eadaoin
The advice that we’re no more at risk than the rest of the population has always seemed a bit nonsensical to me. COVID-19 is a new disease that no one has any natural immunity against, it’s pretty much a given that anyone being exposed to it will get it.
That said, you’d think consultants/GPs would be singing from the same hymn sheet and erring on the side of caution.
Jennytheb in reply to
The thing is that is probably true but it would be from letter" more likely to be admitted to hospital than others". Worth bearing in mind.
Yep same here, as the song goes, “And I’m still waiting” ET JAK2 positive on Hydroxycarbamide and Enteric Coated Aspirin and other tablets. Took it into my own hands and self isolated from the very start, have not been out for just over four weeks other than getting bloods done at Hospital, then legged it home to get telephone conversation with my Haematologist.
I wonder where the letter went, just not sure what I should be doing anymore.
Jean 🥺
Hello Jean,
I was in the same position and decided to self isolate. I phoned GP who wasn't sure whether the letter should come from them or the hospital. He advised me to self register, which I did. About 10 days later I got the text message confirming "extremely-vulnerable" and a letter a few days later.
So my advice is to self register (and when asked if you have received letter answer 'not sure') and pester your GP
Good luck
John
I am on exactly the same meds as you and have letter or communication either. A bit unsettling
I have been pillar to post on this one (GP, Hospital Team, NHS, registered on gov.uk, PHE) eventually I wrote a long email, as I couldn’t get past the receptionist for this purpose, to my GP surgery explaining my need for the letter for work purposes (i work in a healthcare environment and staff are expected to work though I’m am managing to do some work from home currently) and outlining the guildelines, the government advice and directives and my frustration at my inability to get the required letter. She called me the next day and apologised saying it has been very confusing and they have had mixed messages on who and how the letter would be distributed (additionally my haematology team have had no request for help to identify people which is surprising with blood cancer being on the high risk group! Anyway). So she had a letter sent out to me, which Received the next day, and have submitted to my employer. She did say that I may get others from other sources but at least I am not concerned about employer issues an whether I’ll get paid or not (my direct manager has been great and insisted I didn’t go in knowing about my MPN).
Anyway, long story, but message is that GPs can send this letter out to you. I hope this helps those who need the letter.
Hi Sue, just to let you know my heamatologist is the one who has sent the letter, I think perhaps a call to his secretary may confirm things for you. Hope you get some joy.
I eventually received a letter, it has my name and NHS number on it. It came in an NHS envelope, but looks like a photocopy and is not headed or signed by anyone. No idea who sent it, just hope my work will accept it if need be.
I am confused, and a little angry about this diabolical situation concerning our vulnerability to the Covid 19 virus. Despite Maz kindly clarifying the situation for us it appears that it is down to each region whether a letter is sent, which helps to access food slots if nothing else. I have not had a letter but my daughter has been getting us food, then she got the virus. I did get one letter but it was to say my appointment, which should have been in April, was then made for June, and that has now been cancelled. The Practice nurse was also dispensed with.
This means I am not monitored anymore by anyone. I do not feel vulnerable because of the virus because I have taken very good precautions but I feel very vulnerable having to deal with my MPN on my own. I have phoned around but either the phone is not picked up or I am told it has nothing to do with them. I have ET (Jak2) Hypertension, I've had a CVA, and I'm 70 and on Busulfan, and due for another treatment because my platelets are rising. I am now taking 500mg of curcumin in an effort to bring down the platelets to prevent another CVA. I'll give it another week or so and then try to get some sense out of someone. The problem is, there are desperately ill people out there and that stops me from shouting from the rooftop. Sorry for this long expletive. Take care, be safe.
Hi totally get where you are coming from. If you aren't getting help from your GP, could you call your hospital consultant's sec to see if she could help? When I visit my GP I sometimes have to remind them I'm on Hydroxycarbamide!! If you could find out if you are on the vulnerable list, it won't help you in one way but it would put your mind at rest so you know where you are. Take care.
Hi Vennie, just re-read your letter. The take on us getting direct treatment I feel at the moment is that if the Haemotologist feels you really need to have bloods taken then I feel they will ensure that is done. I am taking a step back now and trying to feel that although we need to take care, there are, bless them, many others who are needing extra care. After all, if you think of it, it would take a lot of effort for us to have bloods done at moment. Hope you don't think I'm being dismissive, just all trying to get a handle on situation. Take care.
Thank you so much for your reply. I shall try again tomorrow. I'm not bothered too much about letters and food slots as I can organise help - but more to do with having a blood test to ascertain my levels, and to see if I need a treatment. With doing things myself I have managed to extend the time between them but the bloods were creeping up so I suspect I'm due again. Stress causes the platelets rise so this is an additional factor now.
Thanks again.
I hope it will make you feel a little better to know that I am also ET JAK2+ high risk and administering Pegasys fortnightly, Clopidogrel daily and a couple of inhalers for my asthma. I am 68. Yesterday, I received my letter telling me /I should stay in for 12 weeks and all the rest. So, they are on the way! This was not instigated by my GP but the hospital I attend for my MPN.
Hubby is 75 Jak 2 positive Poly Vera with MPN Ruxolitinib 15mg twice a day and aspirin he hasn't received a letter. We have been isolating for just over 5 weeks but haven't heard from Haematologist or GP it seems like many of us in same boat
You should contact your Haematologist or GP
I’ve received my government one 4 weeks ago and Saturday one off the Christie hospital saying I’m at severe risk
I’ve no spleen E/T and P/V Jak2 on 1500 mg hydroxycarbamide Apixiban and I’m on Amlodipine for high blood pressure and Irbesarten for enlarged left ventricle plus other medication
Hi Everyone this is my first post. I have PV and take hydroxycarbamide and have asthma . I heard nothing about being high risk until last Friday when I received a text message from Bart’s health saying I was at serious risk from the virus and should stay in for 12 weeks. I don’t know if received this because of the asthma or PV. Have not received a letter. Have been isolating anyway but for short walks . Now not sure whether can chance those at quiet times. X
Hi, the letter is 4 pages, it describes many things, I should certainly think you should have received one, even if just for reference. I live in a very rural area so have been isolating apart from walks. I think if you do come into contact with anyone and keep distance as most people seem to do then it is a relief to get out for something and I feel a good source of exercise. Take care.
Hi Lav, I did get a letter on Saturday, so are you saying you haven't got letter? Do you live in UK? I don't know why then, its all very strange isn't it. Take care, Jenny
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Extremely Vulnerable letter
