Hi all,
Just thought I'd let you know I've received the 'extremely vulnerable ' letter. I'm male, 59, PV, on hydroxy and aspirin but no additional problems. Bit of a shock. Letter was definitely from the GP so it seems to be a bit of a postcode lottery.
This forum has been a real revelation for me since I discovered it a few months ago after thirteen years ploughing a lonely furrow, so thank you all, be well and stay safe.
Hello I am the same as you , 59 , PV on hydroxy and aspirin and as of yet not received any letter Take care
Hi, apparently my letter is in the post. I called the gp practice to find out if I would get one and it triggered the process. I knew they wouldnt have a clue abput MPNs even though my consultant copies them in on my progress. I am 71, have PV 15 years, I am Pegasys and aspirin. I am staying at home and just hope it gives me one supermarket delivery slot. Getting food is a constant worry at the moment. But it is surprising how farms shops, wholesale and corporate catering companies are adapting. As I work in the garden and see a delivery van on the road I note the name and check them on line. And unexpectedly I have found 2 new food source options. Amazing. Keeping calm about it all is the hardest part. And the early morning walk. Keep well everyone, hoping we all get through this.
I am 58, ET, Pegasys and Aspirin. I haven't had a letter but I've had a good chat with my consultant. Basically, it was don't go to work but continue to go for walks.
Hi I live in Northern Ireland I rang the gp who said unlike some other conditions they had no advice from haematology so hadn’t issued letters. He is going to contact haematology and will be in touch. I will keep you all posted. I am 69 with PV on Hydrea
It does seem to be a lottery. I have exactly the same conditions and am 60 and have not had a letter. I spoke to my GP about this and he said because my white blood cell count was normal they didn’t consider me to be any more at risk than normal population.
I agree it appears to be postcode lottery. I am 68 female, ET, hydrea and asprin. Living in Wales seems to have made the process different in that we cannot self register. The haematologist sent letter stating not at high risk, all advice on website differs, and GP surgery unhelpful.
I have a telephone appointment with my haematologist on Wednesday and I'll be querying with him the paradox that:-
When I was diagnosed last November I was given a "chemotherapy" alert card to be carried with me at all times, should I have an elevated temperature I would be admitted to the specialist haematology ward.
The most prominent symptoms of the virus is a cough and HIGH TEMPERATURE.
Has anybody else queried this?
At risk letter
Shielding Letter Received!
GP letter??
Letter from NHS
