Hi everyone. The NHS letter saga, or lack of one in my case, continues! I am feeling very upset and overlooked. I know it isn’t anyone’s fault but my CNS has no information about it and couldn’t help me. I emailed the GP again as the Gov.uk website clearly says to get in touch with your healthcare team if you haven’t received your letter by 30/3/20. What didn’t help today was a friend telling me that not only had she received a call from her GP to ask how she was getting on, but she also had received a food parcel from the government.
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Oh, Willow I see your saga continues and I don’t blame you feeling upset and overlooked and then the final straw with your friends experiences. I cannot help you, but only say we are all here to support you through this from afar. Hang in there, stay safe, that’s the main thing, and please keep us up to date with what is going on for you.
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Dear Erica and Willow,
We read in the press that the government were sending 1, 5 million letters to the vulnerable, I’m sure there are many more than that in the uk
There appears to be a breakdown in communication between the NHS and the government.
The NHS have only given the government a fraction of the vulnerable people. The various NHS trusts in the country are the ones who should have provided the relevant information haven’t done so yet.,
That’s why some have got them and others not.
Rather typical of lax administration in NHS trusts.
I don’t really care if I don’t get one, I know full well that I’m vulnerable and treated as such at the hospital I attend for chemotherapy.
It’s honestly not worth worrying about as long as your medical team are aware of your condition.
Best wishes to you both.
Anthony
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This letter does seem to have caused a lot of confusion and worry for some people. This is understandable, but please try not to worry if that is you. If still concerned, it is best to get clarification of your position with your clinical team. Most of us will need to be ‘shielded’ for 12 weeks, so please do not take unnecessary risks even if you are tempted to go outside and/or unsure about whether you are in the highest risk group.
I have not received the letter or text either, but given there are at least 1.5 million it is clear this is quite a major logistical exercise for services that are already stretched. So it definitely does not mean you have been forgotten.
I did have a chat with my clinical team but I really already was clear that I am in the highest risk group. I also registered on the gov.uk site, thanks to the tips posted above.
As reported in the news today, they will be sending food packages as well, though I am going to update my registration to say I no longer need it as luckily we have friends who are now helping us with basic essentials. So I do not want to receive a food package that could have gone to someone in greater need!
In a week we will also have a supermarket delivery. So there is plenty of help, but it is definitely important to plan ahead.
But if you are having problems getting essential items do not rely on one way, please also register with the local volunteer site as mentioned earlier.
I would summarise all of the above by saying: Never be frightened to ask for help/advice and stay safe and stay home.
It is very impressive how many people out there want to help, so nobody should suffer in silence.
I have merely repeated the advice of friends on the list but it is worth dong if it helps somebody.
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My daughter who is an NHS key worker went to Sainsbury which has first hour of trading for NHS workers.
There was a queue of 20, she got to the door 5 minutes after the hour and was refused entry which is very churlish I think.
A friend of mine who shops at Tesco said their security guys behave like nightclub bouncers!!
Regards
Anthony
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Oh, Anthony, what poor service, I am morphing into Victor Meldrew ‘I don’t believe it’ !!
Well I still havent had a letter or text, but spoke to my research nurse who informed me the consultant wants all blood cancer patients to sheild. Here in Wales we cant register on the public health site, however my line manager who is very aware of my condition but also respects that I want to try and stsy in work and be of some use has found me admin jobs and non.clinical things to do which don’t involve patient contact, so Im really happy for now. Obviously she has advised this may change dependant on the volume of cases coming in but for now Im being useful 
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Hi Maria,
I hadn’t got a letter either, I know I’m vulnerable with blood cancer.
I went on government site to check I was listed and had to register?
I got a text from Gov.uk yesterday saying they would share my details with NHS and if they define me as extremely vulnerable I’ll get a letter from NHS and my GP will be informed.
I phoned my medical practice and my records show that I’m high risk and vulnerable and I will eventually get letter.
Looks like information between the NHS and Gov.UK
has not been shared adequately.
Very confusing
Best Wishes
Anthony
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@Maria.G63 Hi Maria, how are you? it’s really good to hear you were able to speak to your research nurse, when you spoke to them, were they able to talk through with you any specific advice around work at all?
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We could do with a leader of stature in the mould of Winston Churchill to inspire us all, bumbling Boris certainly doesn’t fit the bill.
Anthony
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Dear all,
I was rather alarmed to read on the news today that a boffin, based on a model he had produced seemed to think that social distancing was not the answer.
He suggested that herd infection (in a mild form of the virus) was the way forward.
How a mild form could be found is beyond me and him I would think.
It was also suggested that the elderly and sick could be sacrificed for the good of the younger population…
It’s no surprise that so called experts are springing up and voicing their theories how to deal with this crisis.
The virus is affecting both young and old, sick or not.
What next I wonder, cull the elderly and vulnerable perhaps!!
All of us young and old need reassurance not alarmist theories by self proclaimed experts!!
Good luck and stay safe.
Anthony
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@Blackhat thank you for sharing this. It’s really good to hear you managed to get some clarity! Hope you’re doing OK.
Alice
Dear Alice,
Many thanks for your reply.
I’m fine thanks except I’ve developed yet another sinus infection.
I was plagued by many pre diagnosis but still get them.
1st one this year. My GP Is aware of this repeated problem and has provided me with a standby stock of antibiotics to deal with the issue.
I’ve had so many sinus infections they don’t really trouble me.
Small potatoes compared with Myelodisplasia 
Best wishes
Anthony
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Sorry to hear that @Blackhat. It’s good to hear that you’ve managed to get the treatment for it from your GP and I hope it clears up soon!
Thank you for being such a continuous support for people on here.
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@Willow I am so sorry to hear this, it’s totally understandable that you’re feeling like this. Have you received a letter yet or managed to speak to any members of your healthcare team that has more information?
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Thank you Alice. I spoke to my CNS who couldn’t help me. I then spoke to a GP and have received a letter from him confirming I am extremely vulnerable to COVID-19. Still haven’t received the official NHS letter and struggling to get grocery delivery slots.
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Hi @Willow, I found ringing, with great difficulty, my usual supermarket and telling them I had blood cancer and in your case the letter from your GP, might do the trick, of course then you have to get a slot. Hang in there and stay safe. Let us know how you get on.
Hi Anthony, one think after another, eh, I am so sorry your sinus infection has returned. I find infections really drag me down emotionally. We are here if you need us and please let us know how you are doing. Take care.
Thanks Erica,
I’ve had so many for the last few years, they are just a minor inconvenience really.
Just walked 3 miles in pain with Plantar Faciitis.
I think I mentioned that in a previous post.
Got to keep mobile to stop the Peripheral Vascular Disease getting worse.
Sitting here now with my foot on bag of frozen veg.
Best wishes
Anthony
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Hi Willow,
In spite of my health centre confirming that I’m high risk, I still haven’t received NHS letter either.
Best wishes
Anthony
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