I have just got off the phone from a consultation with a doctor I've not seen before but who went back to my usual consultant with some queries.
I have just been told that as a 60 year old female with MPN and MDS on asprin and Hydroxy I do not fall in any vulnerable group and I can go to the shops etc.
I am so bloody confused. Any specialists out there who can clarify.
I had already been told to self isolate for 12 weeks. WTF.
Angry and confused
Nodmeister 😲
Hi Nodmeister,
I’m on Hydroxy for PV, all the way through I have been told by numerous, consultants, nurses and Gp’s that I am no more at risk than anyone else. But, 10 days ago I had a letter from rheumatology, I also have RA and take Methotrexate, saying I needed to shield for 12 weeks. Yesterday, my GP called to confirm this and to say I would be sent a letter with the local council number to call if I needed help. She has also arranged for my prescriptions to be delivered. I said I had been walking in the evening when there were not many people about And could I still continue, she said a definite NO!
My conclusion is that if I just had PV with Hydroxy I would not be considered ‘at risk’ .
I know what the Bloodwise site says, but it seems to be a lottery over who you’re speak to.
Good luck with getting to the bottom of it! 🤔
Judy
Hi, thanks for that. I've been saying it's a postcode lottery.
I was actually told to isolate for 12 weeks by my, usual, doctors secretary.!!!!!🤯🤣🤣🤣.
I'm going ahead and doing the next 7 and half weeks in isolation and following my gut feelings.
Stay safe piggi50 and everyone else.
Hi..... blood wise states that all patients no matter what your age, medication or past medical history come under the “at risk” group..... mpn are blood cancers.
I have received 2 letters. One from guys stating that I am to shield and one from my gp surgery also telling me that I have been identified as a “at risk” patient and need to shield.
There has been some confusion with gp surgeries as they were not aware it not informed that they actually had to inform and forward their patients names who they felt were at “at risk” and come under this category. Some surgery’s were and are still awaiting the software to enable them to provide and submit their patients names. Unfortunately some haematologists still refuse to believe that mpn are cancers Which I think is very irresponsible as it gives patients incorrect and misleading information which makes patients very anxious. I think this pandemic has had really highlighted this topic even more and something really needs to be done!
All madness. Absolutely no consistency. It was actually my Haematologists Secretary that told me I had to isolate for 12 weeks!!!
Well the secretary was 100% correct!
Ultimately, it'll be down to each individual consultant as they'll have better knowledge of their patients than Bloodwise.
Only problem is that not all of them know much about it and some don't even believe it's a cancer. Once again no consistency which causes confusion.
It’s not down to the knowledge of their patients it’s down to their knowledge of mpn’s
True, and also down to the lack of empirical data on the biomarkers of disease severity of Covid19 in patients with MPNs.
The clinical outcomes that are being used to characterize the natural progression of this disease are constantly being amended as it's new to science, so data on this for MPN sufferers must be as rare as patients with it.
So confused. I am on Hydroxy 500 daily. I have had the government letter to shield for 12 weeks which I have been doing for the last 4 weeks. Today I have had a phone call from the GP's surgery to say because I am Immunosuppressed they need to know my wishes if I contact Covid 19. Would I wish to be ventilated or just stay at home. Now I don't know how anyone else would take this but to me I am 73 with other health issues , how would you react if you get asked if you want to say at home. This worry's me greatly. Oh and pack a bag and make your wishes known to your husband.
Ouch, think they're asking if you choose a no intervention or to ventilated and I assume they don't ask 50 year olds. You do what you want and do not feel intimidated if that's how it makes you feel.
Have got pv and budd chiari on hydroxycarbamide and aspirin. Gp and cns both said it's down to gov to send out letters I have not got one so just carry on as best I can
It’s not just down To the government.... it’s also down to the gp.... it clearly slates that in the link I will attach..... all gp are to send their “at risk” patients names via the software.... it would be absolutely impossible for the government to know all the patients in this category. Unfortunately just because of their position it doesn’t mean they can be trusted
digital.nhs.uk/coronavirus/...
Under the title “what the list does” paragraph 3.... clearly states this....
Thanks for the link, very interesting. I wonder what gp's would call a blood cancer as leukaemia and myeloma are mentioned seperately.
As I said in previous post it is a complete lottery. I haven't received any letter and assume that as I have PV and on aspirin and venesection then I'm not at risk, but the government's own guidance is for blood cancer at any stage and and treatment, if I read it correctly. I've even trawler through the internet and looked at the government guidance to medics on how to identify people and it is down to coding. I assume that haematoligist and GPS have coded it correctly. I have heard that they are doing a second sweep against the original list, but we'll see. Keep safe everyone.
The Government categorically stated that all those with Blood Cancer should be isolating so even though hubby's not had a letter that's what he has been doing. Didn't think he'd get a letter as they never send for him to have Flu jab, I just get him booked in & he states why when he gets there & they question it.
Better to be safe than sorry in the current circumstances.
I think those who need support or the letter to help with the work situation should push for it.
Let's all stay safe, so in years to come we can all discuss how confusing the medical profession made it but we followed the general advice & are still here - perhaps we can help them set it to be able to sweep more into the data search if the need ever arrises again. God forbid.
I shall definitely ask GP & consultant later when everyone has more time. Must be a flag missing on a lot of records.
After a stressful 6 weeks of pushing I have finally been recognised as vulnerable. PV Jak2 positive on ruxolitinib. Had a letter from gp but not one from government yet . Within a couple of hours of my gp surgery phoning to tell me, I was at last able to get a supermarket delivery slot. Prior to this there were none available. If anyone is in the situation where you can't get a supermarket slot and you believe you should be on the vulnerable list then keep on at your GP and keep filling in the self registration form on the government website.
Carol
I had my bloods done this week and had a telephone consultation with my haematologist. I asked him the shielding question after no luck from my gp and his belief is that we are no more at risk than anyone else and that an mpn should not be a cancer. I asked for my white cell counts and both my white cells and neutrophils are below normal due to hydroxycarbomide. I questioned my bodies responses to infection and he said based on these he could give me a letter if I needed one from work. I have just decided to go with my gut and continue to isolate as I have been doing , but am concerned for the exit strategy.
My white blood cells are all good. I would, like you be wary if the weren’t.
My consultant laughed when he told me I had an mpn and said its not a real cancer but you can find information on mcmillan and cancer research UK websites.
I just wish it was clearer as I am paying higher than average travel insurance. It needs to work both ways?
That’s disgusting!!!!
I clarified with my Gp when on phone for an unrelated illness. I’m classed as moderate. Apparently if you receive a letter with your name on it then you self isolate. So I think it depends if you have other conditions. Either way keep safe. I wear rubber gloves when going to the shop. I then thoroughly wash them.
As our diseases are rare, I have often trusted my body over any other opinion. I was diagnosed 20 years ago, and an "expert" told me I'd be dead in 18 months. I may not be a doctor, but I've learned to listen to my body. I'm blessed today with a wonderful Hematology Oncologist who understands ET, but also knows me.
I haven't received a letter - although I am on the vulnerable list as far as home delivery food shopping is concerned. I don't know how I got on it as I didn't apply for it. Sainsburys said they got my details from the government list. The rest I've no idea.
I had a video consultation with my haematologist on Monday. He asked during the consultation how I was coping with the covid-19 restrictions. I told him that I wasn't going out a lot and that I was able to get my food shopping delivered - he said that was good and to make sure I keep myself safe (he even said that in the letter he sent to my GP, which I received a copy of yesterday)
He also said that as Covid-19 in an unknown in the medical world, there are lots of un-answered questions as far as patients who take hydroxycarbamide are concerned. But mentioned that hydroxycarbamide was used successfully to inhibit viral release in DNA (during a previous trial) - he then admitted that we 'just don't know'
I've got my latex gloves, which I wear 'when' I venture out and I've even got a washable face masks, they're call Animasks (I've got a flamingo) which I'm adding extra 'coffee filters' and 'cotton wool face wipe' squares to.
I'm keeping myself as safe as I can. Kari.x
Interesting to read the diversity of opinion and information people are acting on in this thread.
I received a call from an 0333 number yesterday, which identified as NHS and whilst it was difficult to hear the caller, he asked if I had received a letter, (no) and went on to say with my condition I am high risk and should isolate for 12 weeks. My personal belief is that the NHS message, ‘all those with blood cancer’ is a catch-all and MPN as we all know is considered such. Like me I imagine you’ve all read every available web related article on MPN pre Covid and now during. A friend, who is a GP, said some time ago that I would know more about MPN than most GP’s.
So my personal take is that I am not high risk! I am pursuing the basic government guidelines of staying home unless necessary and self distancing. I’m a young 62 and my condition, diagnosed in May 2017, is both PV and ET, controlled by 1g Hydroxy and 75mg aspirin per day with a venesection here and there. My research reading is that hydroxy is not immunosuppressive; I get no more colds or any other infections than I ever did. I am fit and well and will continue to self distance whilst running, walking and cycling. Like the prior contributor I think you’re own body and mind is a strong arbitrator.
All the best, Dudley..
I just had a call from a GP I’ve never met asking why I had registered on the vulnerable list. I pointed out my underlying health conditions and that as ET is a blood cancer which she didn’t think was, that old chestnut again!
So on one hand good I don’t need to shield for 12 weeks and was told to use stringent social distancing measures.
I wonder if it’s based on cost to the practice rather than medical issues?
I was about to change practices before the lockdown this has definitely made up my mind now.
Madness isn't it. If I still had my old G.P. who was there at the start there wouldn't be an issue but as that practice closed I got moved to this one who haven't got a clue about my conditions.
Bloodcancer (was Bloodwise) UK gave me these numbers to contact as they've been working with some supermarkets to try and get us recognised as vulnerable. TESCO 08009177359 and Sainsburys 08000525500. Tescos has put me on the vulnerable delivery list, still be hard to get one I expect but at least Im on. Sainsburys will do tomorrow. Hope this helps if you need deliveries.
I have just signed the blood cancer petition to get added, though when i was on the list I had managed to get Sainsbury’s deliveries and was recently added to Waitrose. So I will probably lose that access now and I will be able to catch covid 19 soon on my trips to the supermarket.
What petition please?
It was on the blood cancer uk Facebook page hope this link works 🤞🏼 bloodcancer.eaction.org.uk/...
Are you saying because your GP doesn’t recognise ET as a cancer you have been taken off the vulnerable list for online shopping? If so, that is appalling.
In 2008 the WHO reclassified MPDs as a blood cancer, hence the ‘D’ for disorder became ‘N’ for Neoplasm. Maybe you could direct your GP to the link below which gives a timeline.
mpnresearchfoundation.org/M...
Yes the classic, it was quite a frustrating phone call not good for the blood pressure!
So I emailed her all the recent info from mpn voice and blood cancer uk about being vulnerable also the bit about being reclassified in 2008.
She was not my usual GP and sounded like she was too busy to talk to me and wanted me off the phone. I doubt I will get a response to my email as all previous ones before lockdown have been ignored.
I can see why you were frustrated. It seems to be a recurring theme in the MPN community, where some battle to be rightly recognised by the clear definition laid down by the WHO.
When I was first diagnosed with ET I had to show proof it was a cancer at work, as the work Dr questioned it. Fortunately for me my Haematologists letter to my GP clearly stated ‘ET is deemed a cancer of the bone marrow.’ In fairness to the work Dr, he said, and I quote, ‘I have been educated today,’ he had no idea of the reclassification of MPNs!
I think if you don’t get a response to the email where you have clearly provided supportive evidence then you need to make a complaint to the lead GP, or Practice Manager.
Hi I had already complained to the practice manager a few months ago and that was the email that I didn’t get a reply to 
this was a long time before the lockdown.
I didn’t want to call them as they keep sending texts out saying please don’t come here as we are too busy dealing with covid 19.
The lead GP called me a month ago and had said he thought because of ET, high blood pressure etc he would have thought I would have been in the vulnerable list. So I wonder if it’s a budgetary issue?
I think it’s time to find another practice and not a good time to look for one.
So much conflict everywhere, I am frustrated for you. 🤷🏽♀️
I would try registering as vulnerable again and sign up with as many supermarkets as you can. I registered but haven’t received a Shielding letter (thank God), I had a reply from Iceland as being vulnerable. So, it might be worth giving them a try. Keep us updated.
Good luck and stay safe
Mary
Thanks I had a delivery from Waitrose today so I’ve booked another one in but it’s not for two weeks.
I was also registered with Sainsbury’s so hopefully I can still use them and it takes as long to get taken off the list as it took to get on
Hopefully, they will ‘cock up’ as that’s what the theme seems to be, and you’ll be left on. 🤣🤣
Can you get me some gin please?3😎😃😂😂😂😂
Cheers, didn't think of them. Hope they di gin😂. Stay safe. X
Oh brother! Really!! Definitely time for a new doc.
That's wrong. Got letter from NHS saying I'm extremely vulnerable and not go out or meet anyone for 12 weeks
If I were you, I would isolate as much as possible and wear a mask when you go out and practice social distancing. This is a highly contagious illness and it does not discriminate. Be mindful of all the procedures to keep yourself safe. I have MF and take hydrea, and another chemo pill called fedratinib, so I feel I’m immunocompromised. I’ve been self isolating for over a month but I do go on on walks with my partner and once in a while we go together to buy groceries. I’m in the US and no one sends us letters or advises us. My boyfriend, who is diabetic, has asthma, and kidney disease, goes out frequently, although he is working from home. When he comes home, he changes at the door and put his clothes in a bag, and changes into his inside clothes.
Just thought I’d give you my perspective.
Stay safe.
I eventually got a letter from my GP and the hospital but nothing has happened since. Shielding is impossible as even if I get my partner to go get the shopping I am still exposed. I don’t think our conditions are being taken seriously
I agree.
You mention that your boyfriend has diabetes, asthma, and kidney disease. These are all risk factors that could make CoViD19 worse if he should become infected with the virus.
You both need to take great care!
I personal think vulnerable or not we all should self isolated during this difficult time and only go shopping, chemist etc when absolute necessary. It's safer for us as cancer patients on chemo medication as well as helping the hospital frontline workers and the community especially there are still no vaccine for the virus. We can only work together and try to be serious about this to flatten the curve . I live in South Australia and I have no letters sent to me re:advice at all. But my haematologist and my GP only giving me consultation on the phone as it's safe for all of us, and I received phone calls from our Leukaemia foundation to check up on us. Everyone shield ourselves here and our country is doing quite well now. Be patient, we can get out of it. All the best to everyone, stay safe❤️
Natural to be confused when the medical system does not really have a clear answer yet. From what I have read and seen presented, I ran it all by my hematologist (who is not a MPN Specialist). I have a JAK2+ PV with elevated erythrocytes and platelets. I am on a phlebotomy-only protocol. My immune system is in good shape. I do have some underlying conditions, including Neurofibromatosis and a history of arrhythmia (cured by surgery). My doc concurred with the following. 1. I am not at any higher risk for contracting COVID 19 than any other 64-year old. 2. Theoretically, I would not react differently to COVID 19 infection - HOWEVER, no one really knows yet how people with MPNs are going to react to this virus. This is a new disease and there is not adequate data to have a definitive answer.
I have a tele-med appointment with the MPN consultant from Johns Hopkins MPN Clinic next week. Perhaps I will learn more. For now, I am doing the following: 1. Assertive social distancing and limiting contact to just a few people. 2. Limiting how much I go out in public. Essential activities only. 3. Wearing a mask and gloves when I do go out. Wash up when I get home 4. I go outside for walks and exercise daily, but do not approach people. In summary - be careful - but not completely isolating.
I think we each have to evaluate the data, look at our own health situation, and make a rational decision based on our individual risks and our risk tolerance. There is no single right answer. Additionally, I believe that we all have to take responsibility for ourselves and ensure that we do not become a source of spreading this disease.
Hopefully health authorities in our countries will eventually get a solid base of information together and provide us all with consistent and accurate recommendations. Until then, it is up to each of us to make good decisions to ensure our own health and to be socially responsible in the choices we make.
Sainsbury's are not protecting vulnerable people
Extremely vulnerable
Problems at work
Feedback from Haematologist 
Not sure how I feel
