Just for info sharing.
I called my GP surgery today to see whether I should have had a letter re extreme vulnerability. They told me that NHS digital have miscoded many conditions, including MPNs, which means they have no authorisation to issue a letter even though my medical record is clearly marked with a compromised immunity flag . Apparently they reported it early last week and NHS digital are "working on it". I suspect this is affecting many MPNers.
John
Ah thanks for that John that's interesting. I have just put a request in with my GP via econsult, I have been abiding by the guidelines for that extremely vulnerable group since my consultant confirmed it two weeks ago so no problems there. It's just the letter is helpful to assist with food delivery slots and I think meds delivery further down the line if needed, it must be an admin nightmare for the NHS and all the gp surgeries, we will get there. Main thing is keeping safe!! Please do John.
Yes, I spoke to my GP last night and he confirmed there was a problem with the software. But he confirmed I should be shielded and has done me a personal letter, which will be fine for my employers, though not sure if it will unlock those magical delivery slots!
keep safe, Fee
It must be an administrative nightmare trying to ensure that everybody with a variety of health issues are contacted, and I had heard nothing until I received a letter yesterday from my NHS Trust telling me to stay inside for 12 weeks.
I was previously considered to be in the unclear group, being aged 63 with ET JAK2+ and no other health issues. I am taking 2 Hydroxy tablets and 75mg aspirin daily and the condition is stable at the moment, with the platelet count being around 400.
I think that part of the problem is that MPN's are not fully understood by many health professionals and this adds to the confusion of whether we are at risk or not. One of the GP's at my medical practice has said to me in the past that I probably have more understanding of the condition than him.
Hope you get some clarity John and good luck.
Ian
Couldn't agree more with this statement. Its quite scary isn't it to think our Gps don't know enough about mpn. I have had the same issues with my surgery with Gps having to ask me to explain what the condition is. I did finally get a note for work but still no letter from NHS. The surgery still not aware of adding people to the high risk list. Just relieved my employer has accepted the note from GP and i will be paid otherwise i would have stayed off for the 12 weeks because my health is more important than money. Unfortunately their is a lot of people out there who are not as fortunate to be able to go without pay and are risking their health. All the information on the news and nothing about who is responsible to get these letters out to people. Take care all and stay safe.
I work for a small business and I am fortunate to be able to work from home in the short term. This is helping me to maintain some sort of normality in my life and keep boredom at bay.
I am also lucky that I have an employer who is understanding and supportive to all his employees when they have genuine issues.
Yes - I thought my GP knew all about it (she said she had known "loads of patients with MDS") (I do have the overlap MPN) but then last week when I spoke to her on the phone about my noisy heartbeat, she asked "Do you still have anaemia?" It doesn't give one much hope when you are more knowledgeable than the "experts", especially when they pretend that you haven't got anything serious. I am only on aspirin and Watch and Wait, but I still have to do blood tests every few months to see how it is progressing. It would also appear that she hasn't received a proper diagnosis as my medical records say "MDS not specified." Can't just ring her without speaking to reception and am considering sending a letter.
Hello Ian and everyone,
Am replying to this particular post because I am in the same category, ie unclear/all MPNs should be classed as extremely vulnerable. I am in my 60s with ET, platelets at last blood test 480 but still coming down, hence meds still being adjusted, currently taking 2 hydrea and 1 asprin per day.
For the last 3 weeks I have practised a combination of shielding, self isolation and common sense, but a supermarket delivery slot would be a God send.
I received a letter from my haematologist stating I was not at an elevated risk and was very happy, but the same day, I think about 22 March , stating we were extremely vulnerable/unclear and to ring our GPs, so not so buoyant. My surgery were unhelpful and said the email was probably a scam, I couldn't get passed the receptionist.
As I live in Wales I cannot add myself on to the vulnerable register, however, yesterday after following the links, the message for Wales has changed and that we should get a letter by 6 April and if we don't to ring the GP. Well, I hope I get the letter because I don't hold out any hopes with the GP.
So thank you to everybody who shares on this forum because it helps to know that I'm not on my own.
Jeanne
I called my surgery yesterday and received a call back from a GP. He told me he didn’t consider ET a cancer! When I told him WHO now classed it as such, he said hospitals don’t seem too worried by it, and it can’t be considered in the same category as other more severe blood cancers.
He said that GP’s don’t make the lists anyway, and can’t add people, but did agree that as I was on Interferon I was probably slightly higher risk than normal.
There is so many mixed messages at the moment, and although I agree we are thankfully not in the same category as more severe cancers, I do think MPN’s should be recognised. It seems at the moment it depends on the individual’s GP and hospital trust as to whether we receive a letter or not. Thankfully I am not going into work at the moment as I work in a school, but am worried I might be called in on a rota, and may need a covering letter to refuse.
I can sympathise. My consultant haematologist doesn't consider ET to be a cancer! Thankfully my treatment plan does.
John
MPNs weren't recognised as cancer until fairly recently (with the last two years?) so some people are not up to date with the classification.
Hi Maggie,
Actually the WHO recognised MPNs as cancer in 2008 - but I certainly agree some parts of the medical world have been slow to catch on.🙃
Thanks, Ovingite for putting me right.
I was only diagnosed last June, so I guessed it had been categorised some time between then and the MDS book coming out. When I looked at the MPN book that I got recently, there was no mention of cancer, so I guess everyone is referring to that l edition which is quite old. You certainly would have thought the medics might have "caught on" two decades later!
I talked to my heo specialist nurse and my mind was put to rest but I had my regular blood test yesterday and had a little chat with the receptionist about these letters. She did say she seen my name and I will be getting a letter in the next couple of days. My gp surgery sent letters to high risk first they are getting lot of people saying they cannot work as they have diabetes or asthma but not on the high risk so my gp has explain your only high risk if you get a letter last week and this week as the gov guild lines have changed they are regular reviewing patients.
I have ET jak2+ on clopidogel and also have other health conditions.
I phoned my GP surgery on Monday and they were quite firm about my not needing a letter.
I explained I have blood cancer and on some NHS sites it says because no-one knows exactly what could happen, we should be under the vulnerable remit.
Receptionist was adamant that under the guidelines received MPNs didn't fall under their guidance.
To be fair, I think she must have been working so hard trying to help people that she was quite tired.
Anyway it will be interesting to see if any government/NHS guidance is modified to include MPNs.
p.s. I've experienced a few medical people who don't know what an MPN is or what its effects are.
Hello....
the guideline do include mpns already.... and we do fall into this category. I have included a link for you to read.
bloodwise.org.uk/coronaviru...
I will also add a link for you to register yourself as vulnerable.
digital.nhs.uk/coronavirus/...
Only for England.
You know that, I know that and most of the people on this forum know that - but unfortunately many GPs and hospital haematology departments appear not to know and are therefore not issuing letters. Self registration appears to be the way forward if you want to be on the list.
ps. my GP surgery suggested that when registering as vulnerable, on the question "have you received a letter from the NHS" you should answer "don't know". If you answer NO you will not be able to complete the registration.
So very confusing and frustrating, but we are where we are so we just have to do what we can to stay safe and support each other
John
I completed the registration fine and I put that I had not received a letter from the nhs
I registered about a week ago with this first link and heard nothing so I "re-registered" on Tuesday and now the link is much longer. I have had a response whereby they are contacting NHS and also offering to try to get delivery slots. I have posted my text reply above. It may well be worth your "re-registering" again. Good luck.
Hello John,
Thank you so much for that information. No wonder so many of us are running around in circles like headless chickens!
I do hope NHS digital get it sorted out.
We have both been self isolating for two and a half weeks now and are OK for food at the moment. We have no kids to run errands for us so unless we can somehow get a food delivery slot we will soon be stuck.
I don't much fancy going to the hospital pharmacy to pick up my Hydroxy either. I did phone the hospital to see if I they could send me a community prescription so that I could ask a neighbour to pick it up from a local chemist for me, but no joy there, I'm afraid. Not surprising as they don't consider ET a cancer nor Hydroxy a chemo drug.
Just have to keep my fingers crossed that something is sorted out so that we can continue our self isolation for the 12 weeks recommended by the government and NHS.
All the Best, John, Keep Well,
Caroline
Hi Caroline,
I was told some time ago that hydroxy is a "red list" drug that can only be dispensed by hospital pharmacies in England. However I have heard that some haemo departments are arranging for prescriptions to be collected from the haemo reception are, which means you dont need to wait for it to be dispensed. It might be worth a phone call to find out. Fortunately, I think I have enough to see me through the 12 weeks
Good luck
John
I’m under guys but I live in Essex and they have arranged for a driver to deliver my interferon to me tomorrow.
What a lucky girl! I wish my lot were as accommodating!
All the Best,
Caroline.
Hi John,
About two years ago, after a phone consultation, I was sent a "community prescription" for Hydroxy and was able to get the tablets from my local chemist, so I know it is possible. The chemist had to order them in for me and I went back and collected them the next day. It was very convenient, much better than waiting a hour at the hospital pharmacy!
I suspect it must cost the NHS a lot more for the local pharmacy to fill the prescription as they obviously don't like doing it.
I don't know why they sent me one previously, I didn't ask for it,
but I could do with one now! My tablets run out in 4 weeks and as we are being asked to "Stay Home" and "Save the NHS" you would think that they could make an exception just this once so that I can follow government guidelines!
Certainly, picking the tablets up from the haemo desk would be preferable to the hospital pharmacy which is in the main waiting area of the hospital and usually full of people, but they didn't suggest that last week when I phoned them. I'll wait a little longer and see if things change, maybe send them a letter.
I'm glad that you don't have to worry about your medication for a while.
All the Best,
Caroline.
I requested a prescription for hydoxycarbamide last week when haemo dept rang to say my 4 month review tomorrow was being put back to August . My prescription was made up and delivered to me that same evening by someone from the hospital pharmacy. Haematology had said I shouldnt collect it.
On the other hand I am one of those still without a letter and wanting online delivery from a supermarket. I have registered 3 times on the govt website. I am hoping they will check with down the line with GP. I already shielding with ET and want to be less dependent on friends. My husband has heart problems and his driving licence rescinded so both shielding. Trying now to compose an email to my GP based on the great feed back on this forum as we have had no contact since she sent me for a routine blood test 18 months ago.
Wow! That's an impressive service. You obviously don't live in Buckinghamshire! Can't even get a community prescription from my haemo.
I think because of the need for monitoring , with regular blood tests only the hospital pharmacy handles the prescription. That is in line with NICE guidelines. My dosage has been increasing since December so wouldnt want another stage in the process. I dont think many GPs knw much about MPNs as they are rare. I am in Surrey under the local General Hospital .
Meant to also say, I hope you manage to get a delivery slot from a supermarket soon. I managed to book one about a month ago which is being delivered this Saturday which should keep us going for a while. Don't know what will happen after that. Luckily we do have a local greengrocer and a farm shop that have started doing deliveries but they are getting overwhelmed by the demand too.
Stay Safe.
ET on aspirin alone high risk or not?
Got a reply from GOV>Uk coronavirus support'Benefits' of being classified as "extremely vulnerable"
Anyone know who is delivering the third primary Covid vaccine?
GP cancelled my free prescriptions as doesn't classify ET as a blood cancer, and even if it was, I'm not recieving ongoing treatment!? 
