Another NHS letter query ?

[9876]

After reading posts on here I have just spoken to my GP receptionist about not receiving the NHS letter; she has stated it is nothing to do with the GP who has no input as to who is on the list ,she cannot check if I am on the list , I did say that I thought that GP could recommend people if they thought they had been missed and she said not yet have they been asked for this information, 🤷🏻‍♀️,I suppose I am still on watch and wait with a lymph count of 29 but slightly low neutrophils of 1.1so maybe do not qualify as high risk , I am self isolating but the letter could be helpful with getting slots for shopping, should I just leave it or phone again at end of week if I still haven’t heard anything?many thanks x julia

[Hidden]

You can go on line and try to register as a vulnerable person. They will want NHS number and hospital with consultant name. Link can be found on hairbearuk posts.

I did that last week and nothing yet. Did it out of curiosity! But not too bothered as I’m enjoying my freedom, taking care of course.

Should I get symptoms I’ll be shouting CLL loudly at 111. That’s when it will matter for me.

[9876 in reply to Hidden]

Will look at registering as vulnerable person even though I don’t feel vulnerable, it was more to do with the people I work for expecting me to work after my two week isolation , I already think this will result in me losing my work if I don’t resume

[Hidden in reply to 9876]

So hard for those who need to work. Chatting to the lowly paid supermarket worker last week. I feel for them as they try to dodge people all day at work.

[Jsk1950 in reply to Hidden]

Filled in form but no box asked for hospital or consultant

[Hidden in reply to Hidden]

I found your reply interesting because I registered my husband and myself on the government website but was not asked for our hospital or consultant (neither of us has had a letter).

[Hidden in reply to Hidden]

Last week the online form asked for that. Perhaps it was changed or perhaps a different link. Anyway not worked but the gov.uk guidance dated 30th March changes the information we have been given as is divides us into acutely vulnerable (those with treatment on going) and those at risk.

Attitude now for me is I have freedom BUT I must be so careful. I live alone with no government or supermarket support, so don’t stress get on with living during the lockdown.

[Poodle2]

Julia, when I registered with Sainsbury's for the priority online shopping they only asked why I was vulnerable but didn't need any letter or text or any other evidence. Try to call them and see. Having said that I did register on the government website just in case.

[cajunjeff]

This is purely conjecture on my part, I do not know what criteria the NHS uses to put people in high risk and issue them a letter.

My strong suspicion is that anyone having any sort of blood cancer in any stage qualifies for their list. I doubt that NHS has the ability to distinguish among blood cancer cases and draw some bright line which would say that those with blood cancers above the line have intact immune systems and those below the line do not.

If there is some benefit to having an NHS high risk letter like employment protection or preferred shopping hours, and I had Cll and didn’t have such a letter, I would be squeaking my wheel like hell until it got the grease.

There must be some way to make such inquiries. I just don’t know what they are. I would be shocked to learn NHS has the ability to distinguish among blood cancer cases. Does an individual doctor have to put his patient on the list? Knowing how the list is compiled would certainly help.

[9876]

Thanks for all your replies, decided to give it a few more days to see if a letter arrives and then phone theGP again ,

[AdrianUK]

cllsupport.org.uk/latest-ad...

The CLLSA statement also contains a link to a statement from the top CLL experts in the country who restate the position that ALL CLL patients should be shielding. This document may also be helpful for anyone needing to persuade an employer. Please don’t wait for a letter to arrive. Start shielding now if you haven’t already.

[Woky]

Same for me - no letter etc

shameful there are NO supermarket delivery slots available, and we see pictures in the media of food binned at wkend by the ‘me first’ crowd

[Hazel33]

No letter. No food delivery slots. It leaves two options - either starve or go out to get food. So upsetting and frightening.

[AdrianUK in reply to Hazel33]

Hi. There are groups of local volunteers springing up willing to help. You can find them through Facebook or ringing the local churches or foodbanks. The government website for registering allows you to point out you didn’t get the letter. And it should be possible to get a GP to get you added to the list tho some of them don’t realise this.

[Quarry]

My feeling is we need to take personal responsibility big time. The NHS is overwhelmed with people critically ill - they are the priority and getting equipment/medical practioners for them is just a massive, massive task. I am sure GPs too are completely overrun - and this is before they are losing staff who need to self-quarantine. Given the scale of the Cronovirus epidemic, it is unrealistic to think all other support processes will be smooth.

Like Adrian, I suspect there is no time/resource to finesse a list of people who are on critical list, so they will just go by broad categories. Take all precautions to stay extra safe, don't wait to be formally told. Has anyone tried 111 to ask re letters, as none of us appear to have one? How about using the CLL Support Association's advice in lieu of a letter if you need one for employer (surely a reasonable employer will accept this).

The medics are responding brilliantly to an unprecedented challenge - we need to support them / give them a break!