Apparently I’m extremely vulnerable...

[SherlocksDeerstalker]

I’ve just received the text message from the government recommending that due to my condition I have to stay inside for 12 weeks. It has completely caught me by surprise, as I have no idea what condition they mean!

I am a currently healthy, fit, active, almost 40-year old regular busy mum of two. I survived stage 4 lymphoma 17 years ago, and have had no further treatment for 15 years and no further follow up for over a decade now. Could it be that? I had assumed comorbidities were about current diagnoses, but would perhaps having had cancer the best part of 20 years ago be an issue?

I’ve had pneumonia twice in my life. Maybe it could be this? I honestly don’t know. I have been trying to get through to my GP surgery to ask them, but as expected the line is constantly busy.

It’s shaken me up a bit if I’m honest. We are very much sticking to the rules here, and I’d taken the children out of school the week before they closed anyway. I’m very risk-adverse in usual life, and the fact that I may have been singled out as somehow ‘more vulnerable’ has really floored me. Or... could it be a mistake? And perhaps there’s someone else with the same name who really is more vulnerable?

I appreciate these are questions nobody here can really answer, and I know there are people up and down the country in far, far worse positions at the minute. I’ll keep trying my GP. I just wanted to write it down i suppose.

DH hasn't had one, survived nonHodgkins lymphoma 30 years ago, had a lymoh gland removed, radiation and chemo. Has had the flu jab previously but not this year.
I thought he would have had a text or letter but nothing!

In my circumstances shielding is not doable. It simply isn't.

I can minimise the amount I go out even more than I have been doing but I cannot stay in until June.

It's a risk I'll have to take and I'm sure I won't be the only one in this position.

Had the text early last week but no letter. Also receiving the same texts for my mum as my no is registered at her surgery - she has terminal lung cancer and is undergoing immunotherapy so no great surprise she should be shielding but I thought I was borderline: my asthma is moderately severe but i've had 2 bouts of pneumonia in the past year and quite a few steroid interventions. I now can't support my mum to get her shopping etc and relying on my partner to mine and hers.

My husband got the letter yesterday as he has Psoriatic arthritis and takes an injection for it every 2 weeks plus he has 33% kidney function and high blood pressure . Really upset him as he is ill at the moment we think with covid and he had severe anxiety last night along with symptoms that resulted in a 111 call at 4am The staff at 111 were brilliant and helped him enormously but we have sent the whole day on tenderhooks although he is sleeping now to see if he will go downhill He is on Day 9 of being ill with up to last night only mild symptoms but this seemed to send them in to overdrive. I thought we would have been informed earlier by text not over two weeks into lockdown

@forrasee the Government announced today they are sending out a second tranche of messages to those who slipped through the net in the first batch.

@CutCopyPastedLikeYou In my circumstances shielding is not doable. It simply isn't. are you struggling to get food etc because that will be sorted for you.

I might have been sent the text and not received it, I was getting sick of text messages about it so I blocked the number they were coming from. That could explain it!

Can anybody tell me the number that texts are coming from? I think I know it but don't want to post it here in case I'm wrong and it's a real person's number.

Exh has blood cancer and is on chemo so would have expected he receive one but nothing yet anyway.

bluegrasse it doesn't show a number, it says UK_gov

MyDcAreMarvel it's partly the food aspect. Two of my DC are autistic and have learning difficulties. They attend a SN school when it's open! They have set routines and certain foods they will eat. I have tried substituting these past few weeks and they simply won't eat anything 'different'.

They've lost their routine and their sanctuary of school. They need some familiarity and I'm doing my best as a lone parent. I cannot expect a food box or volunteer to cater for their needs.

It's a complex situation. Add to that the fact the children have no idea I even have a health condition as it's well managed. To tell them mum now can't go out for 3 months would send their anxiety in overdrive. One DC is already in counselling.

@bluegrasse I’ve had texts from UK_Gov and also from 07307 810357 - the NHS Coronavirus Service.

@forrasee I still haven't had a text or letter! I have been shielding though but nothing received (and my condition is on the list, confirmed I need to shield)

I remember at the beginnign when this was announced. It was said they were not absolutely confident that they had the correct info. about everyone. The advice was to contact GP/authorities if you disagreed that you should be shielding.

It's a mistake. You have been coded as your GP as having had lymphoma so you have the 'extremely vulnerable letter'.

But your lymphoma is cured so the letter does not apply to you. I've spent all afternoon individually reading patients notes to work out which patients were high risk and which weren't. I suspect most practices will have just looked at who is coded 'lymphoma' and left it at that.

'Any stage of treatment' does not include cured people. It includes people who are diagnosed but having no treatment.

If you see the more detailed guidance it has stuff about lymphoma within 6 months of completing treatment.

I'd get in touch with your GP to tell them but other people have found it nigh on impossible to get rid of the text messages once they are on the system.

@CutCopyPastedLikeYou I understand where you are coming from , four of my dc have asd although mainstream school. They are quite bewildered, they do know about my health issue as it’s a visible condition.
I totally get the food problem I have been able to get food slots though, if you register with the supermarkets with the same address as the government website you will get slots but took me 9 days. I have a recurring slot with Asda now.
I am not a lone parent though my dh is shielding at home with us am sorry you are having to cope with this on your own.
Please ask someone to shop for you though and if you take the kids out, pick really quiet times it’s such a horrible situation you are in. Take care of yourself.

bluegrasse it doesn't show a number, it says UK_gov
and also from 07307 810357

Thank you both, that wasn't the number that was texting me and it didn't say UK_Gov. I've now googled it and it seems to be a scam number that was texting me as others have reported it as being a scam because it said it was a surgery that they weren't registered with and so on - it was 07903 591996 now that I know it was a scam from searches on the number.

The text goes to whoever is the main contact number so kids messages go to their primary carer.

I got the text on 23rd March but letter on 25th was actually for DC3 when I'd assumed it was for me (immunocompromised due to medication) Doesn't really alter things though as if you have to shield someone in the household then the whole family has to shield as much as possible

In reality its not always as simple as a whole family staying in for 12 weeks of course!!

I got the text early last week, but still no letter and no access to supermarket slots. Registered at yougov.

I have a serious heart condition will need a transplant in the future and haven’t had a text.

It all sounds a bit hit and miss though....

But have been told by my consultant to stay home. Although I did go out in my garden today and cut the grass. Is that not allowed then?

As others have said it is very hit and miss.

I was in the initial group to get the text of doom, due to taking immunosuppressive medication. However, guidance from my consultant who has been working with the British Society of Gastroenterology has identified me as moderate risk - basically the same as the over 70's.

It's an incredibly hard task to identify those at risk who need help and people have been misidentified either way. I found it pretty easy to find info about my condition and drugs regimen online, which was confirmed by my hopital team.

I guess what I'm saying is, don't panic and do your research.

Dear OP,
I got the text and letter at the beginning. I had cancer last year but finished my treatment in October. I thought that I had been incorrectly identified so I contacted my GP who confirmed I didn’t meet the shielding criteria. I think they have taken an over rather than under inclusive approach. Just contact your GP to discuss.

I have MS and had a type of chemotherapy type medication to kill off all my lymphocytes, literally down to zero. Normal range for lymphocytes is 1.5-3.5, and after 18 months since my last dose of treatment I'm only 0.6. So a long way off normal.

The British associations or neurology say I'm only slightly at risk but anyone registering 0.5 or lower is highly vulnerable. Being as I'm 0.6, I feel slightly concerned and not convinced it's that much different!

I emailed my GP to ask, and was told I probably should self isolate. Nothing about adding me to a list, that's the hospital's job, but they're following the neurological guidelines.

I register online with the Gov website so I can at least enlist for shopping, and I got an email from Sainsburys saying I've been identified as vulnerable.

I haven't heard anything from tesco or waitrose, which seems really strange to me!

The bbc news app said yesterday that the government are realising they need to include disabled people too, and I get PIP:blue badge, yet still have received no letter!

I had one too. I'm fine now and was so shocked to receive it. I had breast cancer last year - finished treatment last October so I can only assume it's because of that. Scared me though.

The letters are a complete shambles. Plenty of people getting the letters who don’t need them e.g. friend’s cousin who had childhood asthma and has had no treatment for 35 years, but others not getting them who should, e.g. a friend is a transplant recipient and has friends who have also received organs but haven’t had a letter.

Registering on the NHS site is difficult if your condition is borderline e.g. I have a serious heart condition and need a transplant in the future but I am apparently not eligible, whereas if I were pregnant with the same condition I would be.

I don’t need assistance but I do where possible need priority access to online deliveries which I am now not entitled to, and in the case of sainsburys, no-one who isn’t vulnerable can now have home deliveries from them.