Hi everyone, hope you are all keeping safe. My question is has anyone received the NHS letter saying they are in the Extremely Vulnerable group? I saw on the Bloodwise website that the NHS had specifically said MPNs were included but other website don’t seem to be so sure. I have not received anything and am now confused a little bit worried.
Extremely Vulnerable letter: Hi everyone, hope you... - MPN Voice
Extremely Vulnerable letter
Written by
eastwood1932
To view profiles and participate in discussions please or .
47 Replies
•
Yes i've received the NHS letter but as well as Etjak2, I have other underlying health conditions.Atb,tina🤗
I am still waiting for the letter. I am on a tablet which is considered high risk. I was diagnosed with diabetes and taking two tablets a day. Keep positive. I am on my
own with a lovely jack russel. I am lucky my balcony faces greenery and very sunny.
LOVELY IMMEDIATE NEIGHBOURS AND FOOD IN THE FRIDGE.
Hi, no i haven't received letter or tx.. I am ET I take Hydroxycarbamide and clopidogrel.. I work as healthcare assistant in a Dr's surgery. I contacted oncology helpline 2 weeks ago they told me I shouldn't be working due to taking Hydroxycarbamide, to isolate for 12 weeks, which I have now been doing.
Take care
Thanks for this tip, I ma also an NHS worker, in the community as a health visitor. I have been working from home for a week as also on hydroxy. Very helpful of you , although we are all individual, its so helpful to discuss and advise each other. Take care at home.
Hi Iam in exactly the same position as you. I work as a health visitor, I have PV on hydrox, aspirin and venesection. I am also working from home. Finding it very difficult to do contacts on the phone, I think our job is very much face to face and observation. Are you finding it the same. PS have you had a vulnerable letter?
Thats so lovely to find another health visitor in a similar boat! Yes its quite tricky. I did find last week I could take time to listen and interestingly a couple of women talked about some very personal issues which I wonder if they would have found more difficult face to face. Lovely to keep in contact.Please let me know how you get on this week,
Hello Jackgirl10.
I haven’t had a letter yet (North Wales), but I had a call from my consultant last week who told me to stay at home for 12 weeks. I have primary PV Jak2 positive, take Hydroxycarbamide and aspirin. I have not had a venesection for about 12 months. My bloods are behaving at the moment 😊 I have just read your past posts - ‘Misdiagnosed’ interested me as I was too. For about 5-6 years I was unwell with ‘headaches’ and was told they were migraines. I had numerous blood tests over the years and was given all different meds but nothing worked so I knew deep down it was something else. In Oct 2016 I ended up in the TIA clinic as my right eye had blurred/no vision - I was told no scan necessary as I had ‘migraine history’. Jan 2017 went to private hospital for scan - migraine! April 2017 I had paralysis down right side of my face and body - ambulance arrived and rushed me straight in - I was told ‘vestibular migraine’! June 30th 2017 I had a brain haemorrhage. Local hospital transferred me to a specialist hospital where the Haematology dept suggested PV, it was confirmed a few weeks later. Looking back at my notes from my local GP with my consultant my haematocrit had been rising for years and peaked in 2016 to ‘59’. I feel ‘relieved/lucky’ the haemorrhage happened - I ended up in a specialist hospital (3 weeks) and finally had a diagnosis. Sorry for the long post. Sue
Hello - yes I got one Monday having had a text saying I was in that catagory - I am ETjak2 on hydroxy + aspirin, but think I am deemed extremely vulnerable due to also having lymphoma. Best Anne-Marie.
Thanks everyone, seems to be very hit and miss, I will phone my GP tomorrow to she what they say. Is all very confusing
as well as being 81 years old but I am very lucky with good kind neighbours. I am also lucky that I have a garden which I have been able to go into with the last few days being so lovely.. I have done 2 weeks so only 10 more to go !!! Love to all Elsie R xx
How lovely to have kind neighbours, much needed at this time. Also enjoy your garden, a pretty time with birds and bees around. I feels long time 10 weeks, but well worth it .Hope you have lots of interests indoors too . Certainly a time for us all to reflect and remember things from over the years! Take care.
Seem to have lost the first part of my msg. I have MPN ET, AF and COPD.... pretty useless with laptop!!! ER x
Hi just thought id mention that i got a letter saturday. Im pv on 1 hydroxy a day plue asprin. Its from the heam dept saying patients with a weakened immune system have now been told to self isolate for 12 weeks. Ive taken ascreen shot of the lettet but unsure how to upload. Im part of the western sussex hospital group. . regards john
The letter goes onto say that it includes patie ts who currently ha e any type of blood cancer whether they are having active treatment or not
Thanks, I will try phoning my haematologist as well as my gp
I’ve not received a letter either but know I am in this category
Good morning everyone. Greetings from Fleetwood England.
Still waiting for my letter, however at home with hubby and one cat.
Just go out for a walk along the prom.
I imagine that I am on holiday.
It has to be done????
My diary has never been so empty.
I am hoping we are let off soon.
I have counted 12 weeks and I have marked this in my diary.
28th of May.
However, it's always open for review by the powers that are feeding us all this information.
Keep safe everyone.
Regards.
No, not heard of anyone unless they perhaps have this and another serious condition. I have only heard of one other person who has been seriously ill for several months last year and in the letter they have been told to isolate for 1 year!!!
Hi sorry to put a bit of a downer on this but the 12 weeks is from yesterday 29/3 so takes us in to June and I'm afraid it will likely extend beyond that, given how things are going so just wanted to warn you all not to get too excited about escaping at the end of May. Good luck all
The dates may change to go further forward, I doubt it will shorten. 😔 but we’re all in this together, we CAN get through this!
Well I think that the 3 month lockdown or equivalent will be universal soon, not just those with certain illnesses. Hubby is 75 so he will go out and get shopping and I won't accompany him but he is also supposed to be in the group as over 70 but if you can't get deliveries what are you supposed to do? Take care all, luckily summer is coming rather than facing this starting say in November.
Good Morning,
I had my letter last week sadly, I certainly didn’t wish to be classified as Vulnerable..
I suspect it depends on the degree of illness etc..
May I ask, what MPN you have ?
I believe the classification of Vulnerability is assigned In accordance with the degree of MPN you have..
Plus any other underlying illness one may suffer from and age ...
I’ve just turned 68 years, my status is;
ET, JAK 2,+, MF, PV with AXSL1 Mutation, which puts me at higher risk..
I take 8.5 grams (17) Capsules of Hydroxycarbamide per week, and Clopidagrel
plus 3 lots of Venesection, since January 2020 , when PV showed up..
Haematocrit still a tad high, however with all that is happening, I have 6 weeks off from Venesection, due to see my Haematologist early May ??
I also have two other issues going on in the background
Thus the Powers have classified me as Vulnerable by Text and Letter..
The letter is very informative etc, apart from the bit about
“ Have a Bag Packed with your Essentials etc”....
Hopefully you will get some Clarification soon..
Kindest Regards
Maria 😊
Morning everyone. Has anyone in Wales received a vulnerable group letter? Theres a lot about nhs England but I don't know how Wales are managing it.
Hi there,
I’m in Powys and NO letter has arrived!
I have a diagnosis of Myelofibrosis (Chronic Leukaemia). I’m on Ruxolitinib which is meant to lower the immune system.
• in reply toStreetPastor
Ditto in Scotland - no letter. Also on rux for post ET MF intermediate 2. Consultant on phone told me ,unprompted, to self isolate. Still no way in Scotland to self register.
Same
Yes I got one last week. Sainsbury supermarket is supposed to be getting a copy so that they can prioritise us vulnerables
Hi Eastwood,
It seems that England is slow and disorganized about this, which is understandable in light of the weight of the mammoth Brexit situation. Thankfully, our government in Austria moved very quickly and took steps as soon as it was clear what was happening in Italy and didn’t lose precious time. It all came over night, step by step and almost complete lockdown within 5 days.
At the moment, it is really important to inform ourselves and not wait for others to do so. I found out more than two weeks ago that blood cancer is especially vulnerable. I had already locked myself down a month ago, since I have a pulmonary history and an inborn anaemia on top of that. Triple trouble for me it is! The swine flu almost got me ten years ago. I never again want to relive the gasping for air and not knowing if I’ll wake up. I have a 16 year old at home and she needs me.
Please be wise and do everything possible to protect yourselves. Most people will get it at some point. It’s important that when one gets it, that there are enough hospital beds and ICU beds available.
My biggest tip is, it’s time for us to get off the train, sit, think, read, communicate with friends and family from afar, rethink our whole lives, finally breath some fresh air, exercise, take time to cook healthy meals and be thankful for every piece if lettuce and egg that we have and find peace in the middle of this. It’s a very rare opportunity for big positive change. I’m enjoying my family, my dog, writing, eating, walking in the woods, listening to nature, watching good movies, limiting myself only to the most important news! We can all find ourselves again or redefine our lives as we want them to be.
Take really good care! ❤️ Anag
I have just come off the phone feeling like I have banged my head on the wall. Last week I phoned my GP surgery asking who sends the vulnerable letter out. They were really snotty and said that it wasn’t them, they had nothing to do with it, I need to speak to the hospital. So, I phoned the hospital and they said that they were so far behind but that they were doing letters on Thursday and Friday. Well, the 29th of March deadline came and went and still no letter. I have just phoned the hospital again and they are now saying they don’t do letters it’s the government who are issuing them.
I asked how the government knew that I was a vulnerable person as I am not over 70 so how did they get that information. Nobody could tell me if I was on any vulnerable person list.
Have no idea what to do now. I will try and get some advice from Bloodline again and get back to you unless anybody has more information?
My letter came with NHS at the top of the letter but looking at the end of letter, signed by my Gp. I have and are still receiving several texts a day on keeping safe, what to do regarding neccessities if you have no family or friends, what to do from day to day when self-isolating and contact numbers and links etc. Oh and also telling you Sainburys are working to give those that are vunerable a delivery slot. Atb,tina.🤗
I haven't had a letter as yet. I have PV and I am on peg Interferon. I have emailed my Gp's practice manager this morning asking for clarification. No reply as yet. I have received a letter from my haematology team confirming that interferon is on the list of medication that affects the immune system and I should continue take it. No mention of whether or not to isolate for 12 weeks. All very confusing for us with rare blood cancers getting conflicting information.
Jane
If you go on the NHS website you will read that the government has asked GPS to supply a list of vulnerable people. The GPs have to give you a code on your file which will recognise you as a vulnerable person.
I phoned my GP service and asked them if I was on the vulnerable person list. The receptionist looked and said “There is nothing on your file, do you think you should be on the list?” I told her I had PV and was on Hydroxycarbamide and that I had contacted Bloodwise and they had told me that my condition classified me as a vulnerable person. She said she would send my file to the doctor for review.
So, if you think that you should be on the list then phone your GP. If you are not on the vulnerable person list you will not be given priority for grocery delivery.
I have no family, just my husband who is terrified of leaving the house and bringing the virus to me.
Update: Telephone call from Gp surgery. They confirmed that I am not on the list to receive a letter although I was advised to self isolate. I asked why some of us have received letters and others haven't but they don't know the answer to that. Unfortunately as is usually the case with these rare MPN's we have to rely on our own knowledge and do what we feel is right thing. Stay safe xx
Good morning all. Even more confused than before!! Rang GP secretary this morning to be told the letter should be sent from the consultant and to ring the hospital. So rang the haematology secretary and she said the letter comes from the government but when i reiterated what everyone else were saying about the consultant having to put me on the list as high risk she wasn't aware of that. I will continue to self isolate for 12 weeks but probably without pay from work.
Take care all.
Hi all,
I've had email from one of the main IT suppliers to GP practices in England and the vulnerable letters are being sorted via NHS digital who are using the ICD-10 diagnosis coding on GP records to sort. MPNs do come under a different code to other cancers so may not be picked up on the first sweep. The supplier e-mail has advised GP practices to do nothing so that is why they aren't up to date yet and may explain some of the unsatisfactory responses you are getting at the mo from your practices.
Some people will be getting letters when they shouldn't -eg if they had something years ago -the code will still stay active on the system in the past medical history so it is all a bit of a nightmare.
As detailed by others I would go on the link that someone posted earlier re registering on the NHS website as a vulnerable patient if you come under the guidance and hopefully that will prompt a letter.
For now I would follow the advice that Maz posted and bloodwise. It is interesting to hear re what Guys team are doing as one of the leading centres and they are obviously taking things seriously.
Good luck all.
Hi, further update they've sent another email and it seems the GP IT system teams are still awaiting further updates from NHS digitial so they aren't actioning anything yet today. I'll keep you posted if they do say anything different on the emails in the coming days re the extra vulnerable letters
I received my letter from NHS but with Haematologist name at end. In West Cumbria with ET on aspirin & HU no other medical issues
I received this in an email from my haematology nurse this morning (in reply to my email asking for clarification due the confusing / conflicting advice we're all getting from NHS/Bloodwise/MPN Voice):
"I have just checked the situation this morning with our Consultants, and we are sending “high risk” letters to all MPNs, whether they are on treatment or not.
I agree that the information is confusing and in some cases, conflicting. I think our consultants are being cautious."
This is from Bournemouth, Dorset
Thank goodness you have received the help you asked for. I tried so hard to get the information for everybody, spending hours upon hours in queue after queue but I cannot put any more information on this topic because of the stress it has caused me. I honestly feel I cannot post ever again. My stress level is through the rough and my poor husband is bearing the brunt of it all. I sit here thinking if I am ever going to see my mum again, worrying about getting in contact with anybody, bursting into tears over the phone trying to get some sense from anybody. For my own mental health I cannot do it anymore. I am clicking on links given on this topic to find it leads to nothing more than I have spent so much time going through. I am sorry I even started the topic.
I'm so sorry to hear it's got you feeling so stressed. Be gentle with yourself & try not to absorb the stresses of others.
My lovely husband is being so wise and calm at the moment and I find his insights very helpful (he's a Head Teacher of a junior school and I said to him last night that he's like the captain of a ship keeping everyone calm & mindful) & he said we're dealing with 2 stresses at the moment: the pandemic and the emotional strain it causes with both very real and separate anxieties.
The not knowing and the forum's circles of confusion the last few weeks were making me feel anxious and down last week so I decided to step away from it for a while & try to focus on the small things I can control.
BTW My father in law is 89 and has just been discharged after a broken hip. He's accepted carers 2x a day now but my husband will still need to drive the 300miles to check on him each wk because he's deaf and we need to check on him. It's impossible to completely shield him because of the physical care he needs - so I do empathise with the need to care for you dear Mum.
Take care, and remember this will pass. Sending virtual hugs xx
Hi and thanks for your response. Would you ever consider temporary respite care for your father in law? Do you live in the UK? My mum is in a residential home and the only thing keeping me sane is knowing how good the care she is receiving is. They have put mum on their ipad twice in a week and I have been able to talk to her but I can hear my voice cracking as I speak to her. I would give everything I own just to cuddle her again. Please God, I hope everybody takes notice and stays at home so we can get over this horrible event as soon as possible.
Take care both of you
jill
xx
I have a letter but my PV has left me with other complications so I'm assuming that's why I have a letter
I’ve received nothing yet, not even a text. I have MF
I am in USA 71 years old male, with ET; Jak2 positive.
What does the letter coming from the NHS actually say?
Can someone please post it to this site?
Many people will benefit!!
VMS
Not what you're looking for?
You may also like...
Extremely vulnerable
I wasdiagnosed with ET and JAK mutation about 3 months ago and take hydroxycarbamide and...
'Benefits' of being classified as "extremely vulnerable"
Hello my MPN friends - I hope you are all keeping well.
By now, you will probably all have seen the...
NHS booster letter.
Has anyone else had a booster letter from the NHS with the world record for the longest website...
Letter Arrived to Confirm if Vulnerable etc, Covid-19 & Hydroxycarbamide...
Many are uncertain of our positions during these Unprecedented Times..
Had the Txt few days back to...
Better Late Than Never-Letter Received Today
Having given up hope on receiving the elusive NHS shielding letter I was surprised to have received...
What defines ‘Extremely Vulnerable’ for MPN?
Ongoing UK testing for clinically extremely vulnerable patients 
UPDATE FOR PEOPLE WHO ARE CLINICALLY EXTREMELY VULNERABLE – new shielding measures under the new national restrictions in England 
Coronavirus - vulnerable group confirmation.
