After chasing my tail phoning health departments to find out if I am on the Vulnerable Person List, I had the most helpful call from BloodWise a short while ago. They quoted from, and emailed me, the NHS Guidelines for those who should be placed on the list, it reads:-
"There are some uncertainties in the clinical community about whether certain groups of patients are at a higher risk or not, such as people with MPNs. While it is true that these conditions and treatments don't normally affect the immune system in a clinically significant way, Coronavirus is a new virus, and we cannot say for sure that these people are definitely not at a higher risk. This is why the NHS DOES INCLUDE PEOPLE WITH MPNs IN THE HIGHER RISK GROUP."
So, if you have not had a txt or letter you should phone your GP, who are the ones who are coding their patients if they are at a high risk. Ask if you are on the vulnerable patient list and if not quote the above which is a direct statement from the NHS.
I hope now this will help clear up any uncertainty about whether you should be on the list or not.
I am going to have a big cup of tea now and try to stop my head from spinning around,
Love you guys
Jill
xx
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jillydabrat
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I have actually just spoken to my gp surgery who have advised me that they have nothing to do with who goes on the vulnerable list it’s actually nhs England that gives this list to all the gp surgeries.... my gp surgery has explained to me that they are very angry as people that should be on
The list have been left off including children that are currently on chemotherapy!! Sounds like they are picking out certain people to be on this list.
My gp surgery’s manager has made her own list to to give to nhs England as she feels this is not right or safe!
I would like to add according to my gp nhs England have not put me on their “at risk list” 😡
I had the same response from my GP surgery last week. We then looked on the NHS website who said that GPs were to code their vulnerable patients themselves.
The first thing I said to the receptionist this morning was “Hi, my name is Jillian D, have I been placed on the vulnerable patient list”. She took my details and said “Nothing is on your file, do you believe you should be on the list?” This is the exact conversation I had so it’s obvious the GP service are doing the list.
I cannot see the NHS saying you do not qualify when they have directly quoted on their website that they are putting MPN patients on their high risk list.
Go on the NHS website and look it up or if you pm me your email I will forward you the NHS directive supplied by BloodWise.
The lady from Bloodwise stated that many GPs are not following NHS directives.
My surgery quite clearly stated that nhs England provide the lists not the gps.... and that they were as disgusted as mentioned above children with cancer and on chemo were not on the list
Right, all I can do is give you what the NHS website is stating. If you cannot get satisfaction from your GP then contact your consultants office. Every vulnerable patient file should be issued with a S.N.O.M.E.D code. This allowed those files to be released to all health care organisations. You have been advised wrongly and unless you fight for yourself then nobody can do it for you. As I said, go through your consultant quoting the NHS statement about MPNs and see if they will put you on the list. You can also phone the NHS for clarification.
Thank you for your Advise but I wasn’t being rude to you so I’m not quite sure why you are to me? I was only telling you what I had been told the same as you was telling me..... I have had advise from guys today who have advised me all correspondence comes from nhs England.... not the hospital that your under.... I’m currently on hold to nhs England to get advise direct from them....
I had no intention of being rude so I am sorry if you have taken it this way. The letters will come from the NHS BUT they have to be notified by your GP. There is no way that the NHS can go through all the millions of patients files, they have to be told who is vulnerable so, yes, your source is right saying they don’t send letters but they do have to tell the NHS who to send the letters to.
I have seen your other response regarding Bloodwise. They are not saying people with MPNs are vulnerable. They are quoting From NHS leaflets they have been given.
I hope this clears up the confusion. It’s the last time I am responding as it’s stressing both myself and my husband out. I posted to help people but you have to help yourself.
Hi Pam, yes please could I see your letter. I too am ET Jak2 Pos, but had no letter as yet. My consultants secretary said a week ago I’m not high risk but I’m reluctant to go back to work until I get clarification. So many different answers and opinions on here from consultants, Bloodwise and NHS. Can I ask Pam do you take hydroxy?
It doesn’t matter if your taking medication or not you will still come under at at risk group. I spoke to NHS England yesterday and it’s your gp responsibility to forward their patients names that come under the risk group. I have included the blood wise link. All mpn patients are included no matters what treatment you are on. I hope this helps.
We knew what was coming weeks ago so got a little bit more than usual canned goods and spent a weekend batch cooking for the freezer. We are okay now but without that letter saying we are in the vulnerable person category, we will not have a chance of having food delivered. We have no family, nobody who can food shop for us.
Like you we have been isolating for 3 weeks. I can sit in the garden but at the moment I am the lowest I have ever been. I just said to my husband, I wonder how many people commit suicide because of the stress.
I will be phoning the GP tonight for an update and if they say no I will be telling them they are breaking NHS guidelines.
So... Once again rang the haematology secretary and still told they have nothing to do with the list even after quoting bloodwise information. They are just as angry to receive phone calls like this and they haven't been updated.
If you reread my post I said that I had found out it was the GP who were to give your info to NHS. I added that if you could not get any joy then contact hematology to see if they could nudge your GP basically. End of
Your really rude, my message wasn’t for you....... I was just replying explaining that I had contacted nhs England yesterday...: and they had advised me that gps are to forward their patients names who they feel should be on the “at risk” register.... gps have a file of all your medical history from all the hospitals you attend.... which is why hospitals are advising you not to ring them as they are getting mobbed with unnecessary phone calls.
You know damn well you were picking at me in your response. I have enough on my plate without having to listen to you. All I did was to provide what I thought was helpful information but you had to jump in with nada, nada, nada. Just leave me alone and go and pick at someone else's post.
Really..... I thought I was being helpful.... I’m sorry if I have upset you that wasn’t my intention. I was trying to let everyone know any bit of information that I had got or found out.
Can we please leave it now. Yesterday you said I was misinforming people yet today you have posted the exact same thing. I don't want to fight with anybody so please, just leave it.
I have never said once that you was Misinforming people so please do not put words into my mouth.... and no I will not leave something when I am being spoken too like this.... and am it’s being said that I have said something that I have not. Believe me I have more medically problems than a lot of people but I thought I was helping so please do not drag me down to your stupidity!!!!
When was that ever aimed at you????? That was aimed at gps... hospital etc.... if you have taken that personally that is really not my fault..... now please you leave me alone now....
I phoned my GP back this afternoon and they have reviewed my file and I have been placed on the vulnerable person list and will be receiving a letter. Don’t take no for an answer. If you don’t get put on the list and you feel you should do then you can make a complaint with NHS. I now know we can get help when we need it but I am so annoyed that there is such a difference in how people are being assessed. FYI I have PV jak2+ and on Hydroxycarbomide
I have exactly the same as you and hypertension plus chronic kidney disease 3 and I haven’t had a letter or text but have registered with nhs so just hoping I am put on the list
Hi. I'm the same with pv jak 2 and portal vein thrombosis. You should be in the high risk group as stated by bloodwise who i got in touch with today who replicated this. I've also spoken to GP secretary and they now know about the list. Just waiting for the doctors to get back to me. How can these professionals be so conflicting
Good evening all. Latest update regarding high risk letter. Just been on the phone again and spoken to GP. She's still not clear on the list we should be added to but agrees that i am high risk and written me a sick note for the 12 weeks but she has added that it replaces the letter and the reason why. My employer is accepting this as confirmation.
Good luck to the rest of you out there who are still struggling. It has taken all day on the telephone to get to this point. Not good for stress levels at all.
Just spoken with my surgery and they do not have any guidelines from the Government or the NHS, all the reception could do was blame the government what a joke this the 3rd time I have called them.
Hi Jean, go on the Bloodwise website and get the phone number. Ask them to send you the guidelines that say MPN patients are at risk and should be placed on the list. I spoke to a lovely young lady called Sophia and then an equally lovely lady called Mab sent me an email with the information. If you get this you can forward to your GP so they can see it in black and white xx
Thanks Jilly, have done this and read it word for word to the GP receptionist, she got really stroppy with me, said that she was also at risk as she was asthmatic and had not received anything from the government. Maybe having ET JAK 2 positive and taking Hydroxycarbamide is not a problem in their eyes, but hey what does a receptionist know, they are not medically trained. Well on the BBC doctors they seem to be 🤪 I think I am more clued up on health issues as I am a bit of an old bird 🧓 who has been around the block a few times health wise, so know what I am talking about., well at least I like to think I do, and my husband always says a little knowledge is a dangerous thing, but not for me I lap it up, and it has helped over the years when having to explain to family and friends my health issues, and not confusing them.
We had decided a couple of months ago to change our GP and yesterday after a little bit of a wait due to the Coronavirus we got the notification that we are now signed up with another Surgery and a Doctor is calling me today to go through all my medications and health requirements which is good, so maybe I will now get somewhere with this issue.
Thanks for giving us all this information, you are a star.
Hi Jilly, well it was well worth changing my GP have just had a call from my new GP she was amazing really, really helpful, she told me that if I have not received my letter by the end of this week I am to get in touch and they will add me to their list of extremely vulnerable patients who come under the shielding group because I have ET and take Hydroxycarbamide, she even told me exactly what you and Maz have said about going on the Government website as all blood cancers are included and looking under the extremely vulnerable, which I said I had done.
Hi Jillydabrat, Thanks for your post, I found it helpful...am about to contact my gp about this, xfingers they are going to put me on the list, but at least I have a good idea what to say and argue for
well, I've had my call back and the gp tells me that ET isn't really a cancer, more of a disorder....I argued that one, and she said they are happy to do a letter to my employer if I 'want to shield'. She said also that the only reason to get the vulnerable letter is to get free food deliveries! So, I told her is it a blood cancer, and she said that it isn't really because there is no tumour. She was willing to take it to the surgery meeting to discuss. I told her I am not needing free deliveries, but am going by the current guidance that clearly states I should self isolate. She then said that there is a lot of confusion and differences between the government and the NHS guidelines, and between gp surgeries about the extremely vulnerable category, because there is still so little known.....! I told her I agree, and that is why I am currently going by the official guidance.....
I would go on the World Health Organization website and look up MPN or ET and it will show you that all MPNs were redefined as a cancer in 2011., (I think it was 2011) I would print it off and send it to your GP in an envelope labelled private and confidential so it gets past the Secretary.
Cancer is formed when a single rogue cell divides as all cells do. Because it is a rogue, or "broken" cell it keeps producing rogue cells and forms a tumour. With MPNs it's the bone marrow that produces to many red blood cells, or in the case of AML, to many white blood cells are produced.
Your GP is wrong and you should challenge her with the WHO definition. One day, hopefully, all doctors will recognize it correctly.
thanks, but I pointed the facts out, that it is classified as a blood cancer for some years now, and that is because the cell production is uncontrolled. She seemed to me to be suggesting that my surgery are making their own decision as to who to include, and that they had already decided ET JAK2 are not at higher risk. I don't really know, this is also what is stated on here, for my type of MPN. I'm going to wait to see what they decide at their meeting....which hopefully will be to follow the current official guidance rather than their own collective views.
This is stressful! Maybe I should just be doing the general population guidance, and go back to work. I'm confused. Got diagnosed 2 months ago, told out of the blue I have blood cancer, have started on hydroxy, and since then it is downplayed to a blood disorder by the health professionals. It was such a shock when I was told, I've settled into the diagnosis and being ok with it due to this forum really. Seeing the government categories, I feel I rightly put myself into self isolation last week, but now I don't know what to do. don't want to put people supporting me to trouble for me with my shopping if I can just do it myself.
Good morning all. It looks like the info is now coming through. After speaking to my GP yesterday it seems the surgeries and hospitals aren't up to speed with the digital systems in place for adding people to the list. The NHS in my opinion have put a date in place for people to get letters was wrong and what they have done is panicked everyone swamping the surgeries and hospital with enquiries they know nothing about. Fortunately for me i have a good GP who has agreed i am in the shielding group and written me a sick note for 12 weeks until i receive the letter. Also my employer is accepting this too. Thanks to all of you out there whom without this forum i would be going insane. Stay safe and take care.
I saddens me to see discord on this site. I understand we are all somewhat stressed at the moment but there is still a need to be kind to each other. Also it is sometimes easy to misunderstand the written word and feel that others are being rude/inconsiderate. This appears regularly to be the case in MPN Facebook pages and up until now it has been missing on this site which has made this site such a safe place to be. There is no doubt that there is conflicting advice as to whether or not we should be included in the extremely vulnerable group but really the registration process for these individuals is only for those unable to access support from family, friends or local support groups. Please, let’s regain our care and compassion for each other that made this group the absolute best that I have seen on the internet.
Best wishes and cyber hugs to all and above all stay safe and keep well
Sorry Beetle but when I open my emails and get nothing but this it upsets me. For the consideration of others I am asking her to leave it alone now. I am sorry if it has upset you but I was attacked yesterday and I am not putting up with it today. I have posted on here for years and I hope I have given sound advice and offered a helping hand when I could. Never before have I been pounced on and I don't like it
My comment was not aimed at you in particular. I appreciate your response. I hope you are keeping well and safe and can move on from your recent experience here. Best wishes, Jan xx
Absolutely right jan, people are wrongly reading too much between the lines and then discord sets in. Most of us are a little stressed at the moment but we have to reasure each other and actually read what is written. God only knows what this will be like if most of us have to self-isolate for 12 weeks! Please heed the words of beetle and be as kind as possible to each other and ultimately stay safe and sound and think of the unfortunate ones who are lying in a hospital bed. Sending warm wishes to all. Tina.xx.🤗
I have not once been unkind to anyone..... I was giving simple advise that I had found out by ringing nhs England and I get attacked by someone that I have never spoken too before... if someone personally takes offence to something I have written I’m sorry but that really is not my fault.... if you read back through the whole thread not once have I been rude once and defiantly not attacked anyone!!! I thought I was helping....
Please for the love of God drop it. There are more stressful things to worry about. Nobody is taking offence at anything so please will you just stop and let everyone have some peace. I wish you well and I hope you keep safe
I will drop it when people stop accusing me of doing something wrong.... I will defend myself when necessary.... please stop telling me what to do!!!! This is your behaviour that has caused me to have to carry on defending myself when I come on here this morning to answer messages and find that you have carried on writing comments about me.... now please stop.... because I will say again I have done nothing wrong.....
anyone can go onto this thread and read for themselves that I have not need offensive not nasty in any way....
Gosh these letters are causing more stress than the virus! I think we are all following the guidelines as Maz keeps us updated and if someone is not sure which group they should be in, just follow the advice for the most vulnerable group and then you can’t go wrong.
The letter is not the important thing but keeping safe and protecting ourselves and our loved ones by following the guidance from Maz is. Sending E hugs in their millions and best wishes to All.
I called my GP and , like others here, was told they have nothing to do with the letters/texts for extremely vulnerable persons.
I was told to go online and obtain an “isolation certificate “ from the NHS.
I followed the instructions and the opening page says;
“You can only apply for an isolation certificate if you have, or have symptoms of Covid 19”
So that’s definitely not what I need at the moment.
I’m not worried too much at the moment but guess I will need something official when the majority return to work and I’m potentially doing a longer stretch?
I wouldn't leave it at that. I am horrified at the diversity and conflicting advice given by GP's. Keep fighting my lovely, the GPs will learn the truth soon enough xx
This information is out there on the internet but not easy to find:
NHSE have identified approximately 900,000 people through their own database and letters/texts have been sent.
The additional 600,000 are being identified by individual GP practices. I have contacted my surgery, which is brilliant, and they have confirmed that they are compiling a list and will be sending letters out as soon as possible.
I’m sorry to hear there has be conflicting information for people. Blood Cancer UK have got the info from NHS England who we have been in close conversations with since the start of the coronavirus outbreak in the UK.
Kind Regards
Bav
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Bav Chandegra | Support Service Officer
M: +44 (0)808 2080 888
E: support@bloodcancer.org.uk
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Coronavirus and blood cancer | bloodcancer.org.uk/coronavirus | Latest updates, advice and how to look after yourself
After reading this i also rang my gp surgery and i was told that i have been coded as they are still going through the list, i should get a letter by next week, but after saying that ahe did say they are waiting for new guidelines everyday. Which does jot really help as i have been off work for over a week and still dont know what to do for the best and cant give my work answers to when i will be back or to try to sort out some pay ect. Thanks trish
Hi I have been through to my gp and they have finally phoned me back. I quoted the above but they say they have no such guidance relating to MPN and as its.not specified.on the NHS website or the government website It.only specifies.blood cancer or immunupressants then I am not.classed as high risk. I feel like I'm going round in circles does.anyone else
Maybe if you telephone Bloodwise on 0808 2080888 and explain what is happening they might be able to help, maybe even phone your GP? Worth a try. I know how you feel because I felt I was banging my head on a dozen walls.
I found out this morning that gp surgeries are awaiting software to enable them to upload patients names to the shielding list..... this is apparently updating everyday at different gp surgeries and them themselves are not knowing up to date information until it literally happens. Hope this helps.
Also if anyone is wanting to add themselves onto the shielding list themselves I have attached the link.... just follow the instructions and input your details.... it stated you won’t get confirmation once you send so don’t panic about not hearing anything back.
my worry with that is that working on a hospital ward i could be putting myself at risk because the GPS can't sort the software. Without a letter or something they will think I'm trying to.pull the lead. But who wants to have 12 weeks where u can't see anyone or go anywhere
You have to tough it out like the rest of us. I have been informed yesterday that there has been an outbreak of COVID-19 in my mother’s nursing home. How do you think I feel that if my 96 year old mum becomes infected that I will not be able to sit and hold her hand or be there when she passes. You will have to just suck it in and do what your told like the rest of us. Sorry if I sound sharp but my heart is breaking worrying about my mum who I adore.
Hi i want to work i don't want anyone to pass on their own in hospital or in a care home and I hope that if that time co.es for anyone then ill be there holding their hands and reassuring the. If their families can t be there. Its a horrible disease . My mum is 81 lives on her own no one to help her except for me doing shopping and dropping it at the doorstep so like you I'm worrying about her too hence why I don't want to take any risks either for her or for patients or me. Sorry to hear about your mum. Such a worrying time for people and with nothing clear in black and white ur right ill.just have to suck it up. Scary times. Take care stay safe x
Hi. confusing isn't it? I would trust my GP in what he says because he is so thorough and was the only one to investigate my high platelets, but I may have a telephone appointment on 1st May with Haematologist, who is a specialist in MPNs so I will see what she says and get back to you.
Hi Jill. Thanks for the update. Please take care and look after yourself and try not to let some of the responses get you down. I had a response to a post the other day and it really upset me - I was going to leave the forum but most of you are so kind, supportive, helpful and understanding that I need and want to stay in touch with you all. This is so hard for all of us. I have to be honest I’ve yet to hear anything - major stroke two years ago, on clopidogrel, statins and hydroxy so started shielding about four weeks ago. I do take Bertie for a walk everyday because the consultants have always told me the best thing I can do to stay healthy is exercise. I feel a bit like I’m breaking rules but the daily dose of fresh air is keeping me going. I couldn’t get to Devon so on own in Hereford - a bit scary but taking one day at a time.
Thank you Jacquie, I really needed that reply. At the moment I feel I don't want to wake up to face another day. I know everybody on this site who, by the way, I have come to know as friends, are going through their own stress at the moment. Because my nerves are so on edge I am now frightened to post because of the responses I am getting. I will probably be jumped on for responding to you, just watch. So I think now it's time I try and help my mental health and step back. Once again I thank you
I think you need to not open health unlocked for a few days, just try and put it out of your mind and concentrate on yourself and your husband.
You have been very helpful to a lot of people, but I feel you need to take a step back for a while. Don’t leave totally, we would miss you.
I know it gets addictive and you have to look every day. I was late to Facebook and I’ve only been on it for about 18 months, but last week I deleted my account as I was so fed up with the general comments people were making and I realised it really was of no benefit to me.
thanks Judy, I think I will be taking your advice. The weekend is supposed to be sunny and warm so I will be out in the garden. The council have put off picking up the garden waste for another month and I haven't any room in my bin for any more. My excuse anyway. x
Brilliant advice as usual. I think a lot of people getting stressed now,not helpf by the 24 hour wall to wall coverage and the daily rising cases. This thing is like cancer we are all going to know people affected my it or God forbid someone in our own family. I have never signed up to facebook personally but still get a running commentary on it nearly everyday from friends and family. You can't escape it! I think you were wise in deleting it judy. Sending warm wishes & stay safe.tina.x🤗
That is such an incredibly kind offer that means so much to me. Unfortunately I live way north of you on Teesside but your offer is very much appreciated
there is so much conflicting info between the guidelines from the government sent through the MPN website (which puts most of us in the extreme vulnerable group) and the info you sent above.
No matter what, it is wise not to tempt Covid 19 and we should protect ourselves and others. I don’t know what will happen to me if I get this and I don’t want to find out. 😉
Please stay safe everyone and concentrate on living happy every day. 😘 Anag
Thanks Jill. We do seem to be told different things by different organisations. I'm waiting till end of week to see if I get a letter from GP or not, otherwise I've been told to ring back. Love, Cassie.
Thanks so much for that Jill. I thought that hyroxycarbimide affected the immune system so rather pleased to read those guide lines although they are somewhat ambiguous.
As to contacting "our GP". Here we dont have a "my GP". It's a pot luck system pivoted on a phone call. Right now we are told "Unless this is extremely urgent call tomorrow". I am girding up to trying to get a blood test having failed 10 days ago as the Medical Centre's system changed.
But at this time suppose one should be grateful than the phone is answered albeit after a long wait!
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Scotland - NHS letters for MF?
Got on the supermarket priority list for vulnerable people
