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.

Is it the very vulnerable text you had, or the one that went to everyone that gets a flu jab?

I haven't had either. Was there one for the flu jab people? If so I don't know anyone round here who has had such a letter or text. All we've had is the general government text and letter.

Past cases of pneumonia alone won't be a trigger for the 'most vulnerable' letter. I and others I know have had pneumonia and not received one.

I don't know anyone who has general asthma to receive one either.

I have an inflammatory arthritis and take methotrexate - that isn't part of the most vulnerable group either.

I also had a procedure on my heart last September - again not part of the most vulnerable letter group.

Only people I know to have received the most vulnerable letter are people who have cancer in some stage. FIL's letter arrived he day before he passed away from his terminal cancer. The other is on life long experimental drugs for his cancer, though he classes himself as in remission at present.

An update from me - the text I received relates to my DS2, not me! I received it as my mobile number is registered on his records. He had cancer many years ago but is fully recovered and isn't on medication or follow up appointments so, from what I've read, he won't need to shield.

@aragog if you are taking methotrexate you should have a letter. You are spot on about everything else in your post though.
If though you have for example, asthma + previous pneumonia + heart problems + over 75, you would be looked at on an individual basis. Unfortunately this is the group that takes the longest to go through so if you think this might be you contact your gp.
The flu category are classed as moderate risk, so if you usually get called for a flu jab this is you. No need to shield unless you fall into one of the higher risks too.
If you're all still with me you deserve a medal!!

We had the letter regarding my DS who has potential asthma, I was pretty surprised, he was admitted to hospital with viral wheeze twice last year and asthma was discussed but not officially diagnosed as he’s young and has no other symptoms. He’s on a brown inhaler as a preventer but no further medication needed since. Considering the list of conditions on the vulnerable list I didn’t expect to get one at all.

I got the first text on Tuesday, more texts during the week and my letter today.

I've got a fairly rare autoimmune condition, which is on the list of diseases that are considered to make sufferers highly vulnerable.

However...I'm currently well with no recent flare ups and don't take immune suppressing meds any longer.

I spoke to the GP on Tuesday - she didn't have a clue about this and hadn't flagged me up.
Spoke to Rheumatology nurse practitioner next day who wouldn't be drawn on anything and said I needed to read all the details on the gov website.

Both GP and nurse said it wasn't compulsory to do the shielding. Both agreed that applying stringent social distancing was absolutely advisable and that going into any shops was a complete no.

I've also seen a Rheumatology flow chart that asks a series of health questions to advise on risk. Mine was no more risk than any other ordinary person and so advised me to follow standard social distancing.

I belong to a society for my disease and they have advised that a firm diagnosis of the disease does not per se mean that you're at any higher risk.

My conclusion: do your own self-assessment for personal risk, taking into account all the relevant information and after talking to GP/medical team. Don't take any chances.

I have decided not to sign up on the government website, as I really do not want to be compelled to stay at home. I'm fortunate to mainly work from home anyway but the most vulnerable will surely be the very last to come out of lockdown - probably not until there's a vaccine.

I still managed to get priority slot for Tescos when I told them I had received the letter and genuinely couldn't go into the store in person.

The text I've just received this afternoon says that the 'shielding helpline' may ring to speak in person to those who haven't signed up on the website. If they do, I'm going to take that as an opportunity to explain the reasons I'm not shielding but that I'm still going to take extra care and precautions.

I'm hoping this will help them see that this is a really nuanced situation and that individuals who are borderline need to be able to decide what levels of lockdown are appropriate for their own current state of health.

It might be because of the lymphoma. My dad just had the letter because of his myloma even though it was 9 years ago and he hasn't had any treatment since then.

DM hasn't had one despite heart failure and a bunch of other chronic illnesses.

@Nonameslob Would someone with a permanent respiratory condition who takes azrothymicin 3 times a week permanently be in the shielded group?

Nonamelob - methotrexate on it's own isn't enough to warrant a 'most vulnerable' letter. The letter I received form my own rheumatology department said that it just means moderate at risk, rather than the most vulnerable. It was if you had other specific medication, such as a steroid, alongside it.

@alloutoffucks it depends on the respiratory condition but if they are taking ongoing erythromycin I would definitely ask your doctor.

Not erthromycin, but azrothimicin an antibiotic, but thanks.

@aragog this is where the shambles bit comes in. The first set of guidance sent to gp practices stated anyone taking methotrexate or any of the other five in the list are high risk. Later a scoring system was put in place but by that point the letters had gone out! A practice of 20,000 patients hasn't got time at the moment to score every patient on a dmard. We take the stance that we prefer to get letters out to those that need them and those that don't need/want to shield will soon let us know.

@Aragog there is an algorithm they use methotrexate is 2 points - the high risk strict social distance measures. But if you have any other other health conditions ie your heart you score 1 point. A score of 3 points or above puts you in the shielding group.

Table 2: self-assessment risk calculator
Questions If answer 'yes', note the score
Have you had cyclophosphamide tablets and/or infusions in the last six months? 3
Have you been taking prednisolone 20mg (or more) daily for more than four weeks? 3
Have you received rituximab (in the last 12 months)? 3
Do you receive infliximab infusions? 3
Do you take prednisolone 5mg (or more) daily as well as one or more immunosuppressive or biologic medication? 3
Do you have any of the following problems: lung disease, heart disease, high blood pressure, kidney or liver disease, chronic neurological conditions, diabetes, are very overweight or any other medical condition requiring specialist treatment

or even if you do not have any of these problems, are you over 70 years old?

or you are pregnant

1
Are you on just one immunosuppressive or biologic medicine? 2
Are you on two or more immunosuppressive or biologic medicines (other than sulfasalazine or hydroxychloroquine OR a combination of a biologic with methotrexate)? 3
Add up the numbers above, to make your total:
If you score of 3 or more: you are 'extremely vulnerable' and probably need to shield yourself. If you will need help at home to enable shielding you can register for help.
If you score 2: you are unlikely to need to shield yourself. You should practice very careful social distancing. If you are unsure whether you fall in this category, you can contact your dermatology department.

Score of 0 or 1: the treatments taken for your skin condition alone will not increase your COVID-19 risk. Please follow the GOV.UK advice given to the general public. If, however, you have concerns about other medical conditions, seek
advice from your GP or other specialist.

or any other medical condition requiring specialist treatment
This scores 1 point so many people who think they would just be high risk are not.

I don't think the heart thing would count. It's been successfully treated by all accounts, though obviously within the first year of treatment and wasn't a big issue when it comes to covid I dont think anyway.

My other meds aren't point scoring by the looks of it. I am no longer on steroid medication and my last big steroid injection was early-mid February.

So think I'm a '2' so socially distancing but not shielded.
My own school have me in their at risk group so I'm working from home anyway and not on the childcare rota.

Probably a really dumb question but here goes- I received the text on Tuesday, and my letter today. Does anyone know if the 12 weeks is from this week, or from when the first letters were sent out a couple of weeks ago?

I haven't been going out anyway, so there's no issue there, I'm just trying to work out when my time is going to be up (😬)

I’ve found this thread as I’ve had a physical letter received today. I have no conditions and neither does my son (who is the only person I care for)

Do I need to contact my GP or elsewhere to get me removed. I don’t want to end up I’ll at some point and be incorrectly flagged as high risk when I’m not. @Nonameslob I think you may be a GP so may know?

I think the 12 weeks (whenever it actually starts from) is a bit of a red herring.

The most vulnerable will surely need to continue being shielded, one way or another, until they've got a vaccine.

@ritzbiscuits yes I would ask to have the high risk code removed so your records are accurate.
I'm not a GP, sorry if I've given anyone the wrong impression, I'm a clinical administrator. So basically I do all this sort of thing so the doctors can get on with treating patients.

Oh thanks I will do. I don’t want to cause a fuss, but also don’t want any issue down the line if I’m flagged as extremely vulnerable.

I'm lost by who's extremely vulnerable and who isn't, my friend received a letter from the GP to say he was - he's asthmatic. DS and I are both asthmatics and haven't had the letter! We're on the same inhalers as friend and it's been many years since any of us have had an asthma attack

It's all very strange, I'm asthmatic, was in hospital for asthma last march was on steroids for 2 months after, and had another chest infection in November. I am on high dose inhalers and montelukast also have high blood pressure and atrial fibrillation, but haven't received a letter, I know people who are currently on no treatment for cancer who have received the letter.

I logged on to the gov website but haven't heard I'm vulnerable from them.
The first I heard was Sainsburys offering me slots as they said the government have listed me as vulnerable!

I can't get Sainsbury slots, and I'm a tesco customer anyway, but Tesco contacted me, which I find so strange.

In the end I called Tesco and made enquiries and they said they've got loads of vulnerable customers that have been missed.

Seems that, when a system is set up in an emergency, it's not going to be watertight. It's pretty stressful though. And I bet I could bloody organise it!

Sorry, that doesn't make sense. Tesco HAVEN'T contacted me. Haven't. Only Sainsbury did.

Could it be the information was recorded incorrectly at your doctors? Also, government systems are archaic (I'm pretty sure external firm was brought in to help).