I've only just received the letter this morning which seems very late compared to other people! I'd assumed I wouldn't need to self-isolate for 12 weeks so its a bit of a blow! Did anyone else receive it so late?
NHS letter: I've only just received the letter... - MPN Voice
Yes they're still being sent out. People who weren't on the NHS list as high risk are now being added by GPS who may be in the category including Mpn Patients. I spoke with my surgery this morning and they told me i had been added onto the list and they were trying to get letters out as soon as possible.
Take care all.
Hi,I have not got the letter yet and I don't really think I will. I have MF,take Hydroxycarbamide and work as dental nurse. I rang my doc but there are no indications that I would be more vulnerable than anyone else...I was told so that's that. Funny that, as I always get a phonecall telling me I should have the flu jab....
I have CALR+ ET. I went onto the .gov.uk site and completed the form as I wasn't sure whether I would be within the category of "extremely vulnerable" or even if they knew of me. I received a text saying they had received my on-line registration and then the letter came this morning. I think they have over 1.5 million people to contact so it will take a while. If you've not done so, do register on-line to be sure they are aware of you.
Hi, I sent the online form on March 28. I received an email on April 1st? Which said the following : We will share your details with the NHS
If the NHS defines you as clinically extremely vulnerable, the NHS will contact you. Your GP will be informed.
If you told us you need help getting food and supplies, but you are not on the clinically extremely vulnerable list, we'll share your details with supermarkets. They may be able to help .
I'm 73, had ET for the past 10 years on Hu and aspirin.
I had my routine blood check 2 weeks ago and was told by the nurse that I was high risk because of the medication. I then phoned the doctors surgery to which I was told that they didn’t send out the letters. I have also went on the NHS website to enrol on there. Still nothing. I’m self isolating anyway but Like lots of people on this forum a letter would help to give to my employer. Thanks for your advice
I've been told the same thing.
I did receive a phonecall from my doctor on the first Monday that these notifications were going telling me to stay at home and not to go anywhere other than my garden for fresh air (feel so sorry for those without gardens who have to shield) but I've still received no physical letter even though my doctor's first words during a phone appointment were "You're not going out are you?!".
I phoned my surgery on 30th as my employer needs my letter to process my pay (although I've just had a call from my work telling me they've furloughed me for 3 weeks and then will re-assess anyway, so not really sure where I stand with things) and my surgery also said that they've "been told not to send out letters but our doctors have a huge pile of names to add to the list, so it may take a while and some people may not get letters even then. None of us really know what's going on to be honest"
She advised me to self-register on the Government/NHS vulnerable list but I've had no acknowledgement there either - it's like I don't exist
I have not received a letter, nor will I be receiving one. I have been on hu for a year and my last blood count has shown my white blood cells and neutrophils drop to the low side of normal. I actually got cellulitis after a gash on my knee due to my compromised immune system. I was hospitalised for pulmonary embolism and infection a couple of years ago. My gp says that they feel I don’t need to be added to the vulnerable list as I am only at risk. I am fortunate that I have been furloughed and can stay away from people, if not I would have had a problem with work.
No letter for me either. I have registered and had a response from GOV who said NHS or GP would be contacting me. I phoned GP who said what made me think I was at risk!! I am 80 have ET JAK2 and Polymyalgia Rhumatica and take Hydroxycarbamide Aspirin and been on Prednisolone (steroids) for 10 years!! I find it all very confusing. I live on my own and have to do my own shopping.
Yes she has myelofibrosis and on Anagrelide and hydroxy, also no spleen! The letter is really a waste of paper and a stamp. It does give you the guidelines which we have observed in the main. But as we are very rural we don't see anyone anyway. I do the shopping and mask up with gloves and goggles when I go. My mask is home made with eight layers of fine copper wire mesh within it.
My partner and I still haven't received a letter but it doesn't matter now because I have placed my shopping order with Sainsbury's. I just hope I'll be able to get a slot next time as well. I can't understand how the page with all the slots taken just suddenly mostly cleared. I hope you are able to shop online too.
I was forced to go to Sainsbury's to stock up on Tuesday and the first thing I did was to go to Customer Services. I told them we were both over 75 and had underlying conditions and after first saying they couldn't help, they got on the phone to another colleague. They then said that I would receive a phone call. I didn't get a phone call, but I just went online, where I already had a virtual trolley loaded up, and there were slots (Haverhill, Suffolk branch). They did put a message on their site to ask younger people without underlying health issues to do their shopping in person to allow us to shop on line, so perhaps this has worked. I was already a customer, so perhaps I wouldn't have had so much success if I had to register from scratch. I don't know what Tesco are doing, as the last time I was on, they had no slots and then started emptying my trolley for other people! Out of curiosity, I shall have a look.
I haven't received a letter as yet but expect to in the next few days as I have had a few texts indicating as such. I really don't want one as going out for a walk each day is the only thing that keeps me sane as I live alone, but hey ho. Interestingly I had my bloods done at the end of February just as Covid-19 was rearing its ugly head. I asked my specialist nurse whether I would be at increased risk, I do take hydroxycarbamide, but she said not particularly as my bloods were all in the right place and because I had been stable for so long my testing could move out to every 4 months rather than 3. She said just be sensible and follow all the guidelines which is what I have been doing. Really not sure how I will cope with " house arrest ".
Hi all. Little confused. I registered on the gov.co site and received an email from sainsburys to say i had been identified as extremely vulnerable so I could get home delivery but still not received a letter from NHS. Spoke to surgery on Friday and she said i was on the list. Still no letter for work. I have rang the surgery again and now they say I'm not on the list. Rang haematology secretary and she said the surgery should have added me on to the high risk list. Now I'm waiting for a call back from the surgery for answers. Any one else out there having the same problem. Proper stressing me out now.