Anyone immunosuppressed getting lfts

MossyBottom · 2022-03-29T21:45:51+00:00

I keep getting emails saying I've ordered lfts and I haven't. Had two boxes sent to me this week and now got another email saying more are on their way.

MrOllivander · 30/03/2022 01:20

Yeah apparently they're sending them out to people. I haven't had any yet (could do with some as well!) but a couple of friend have

NowWhatUsernameShallIHave · 30/03/2022 01:41

I got one this week but no email

yorkshireteaspoonie · 30/03/2022 03:43

I got a pack through the post yesterday that I hadn't ordered and was completely baffled as to why? Wondered if the hosp had ordered them for me as I'm about to have a baby.

No email or warning 🤷🏽‍♀️

Zingy123 · 30/03/2022 07:31

No, I haven't had anything.

SpinningTheSeedsOfLove · 30/03/2022 07:35

Nope, nothing. I can't order any and I don't know how to get any.

I'm severely immune-suppressed.

It's been bad enough getting my 3 primaries and a booster jab. Now this bloody lottery.

Original poster

MossyBottom · 30/03/2022 10:09

One arrived yesterday with a pcr test as well .
I haven't asked for any of these.

OP posts:

Original poster

MossyBottom · 30/03/2022 10:10

@SpinningTheSeedsOfLove
Try following @UK_LFTalert on Twitter
twitter.com/LFT_alert

OP posts:

SpinningTheSeedsOfLove · 30/03/2022 10:20

[quote MossyBottom]@SpinningTheSeedsOfLove
Try following @UK_LFTalert on Twitter
twitter.com/LFT_alert[/quote]
Thank you!

I'm also hoping my local council might offer something. They were surprisingly helpful with vaccines after I'd given up on my GP practice and the CCG didn't bother replying to me.

Original poster

MossyBottom · 30/03/2022 13:57

Sorry you had such a problem @SpinningTheSeedsOfLove.
I had a few issues with my booster, mainly because I couldn't go to a vaccine centre and my GP had no vaccine supplies. But overall they were helpful over 3rd and 4th doses.
They were not so helpful when I was very ill with covid though.

OP posts:

TypicaIMe · 30/03/2022 18:07

No, and really worried what I'm going to do when my current stash runs out. I have to test negative before I inject my drugs, if I can't do that I won't be able to take them.

I was eligible for antivirals until a few weeks ago when the rules changed (just in time for me to catch covid and be really unwell with it, still testing positive on day 19). Now I'm not I won't be eligible for LFTs either, and I can't afford to buy them.

SpinningTheSeedsOfLove · 30/03/2022 22:28

Same here, @TypicaIMe. I inject Adalimumab every two weeks and need to be negative running up to this. (On steroidal meds too.) Flipping nightmare.

yorkshireteaspoonie · 31/03/2022 20:43

I've just had the accompanying email through from the NHS to say it was they who sent it and a link to get more in the future

RoundGlass · 31/03/2022 20:48

Yep, keep getting them this week. So has everyone else in the FB group for my illness.

TypicaIMe · 01/04/2022 08:23

I've just ordered some! So clearly I'm eligible for free ones. Thank goodness!

MrOllivander · 01/04/2022 10:34

@TypicaIMe

I've just ordered some! So clearly I'm eligible for free ones. Thank goodness!

Mine let me go all the way through then said no slots so I'll guessing I'm eligible...

Fantasea · 02/04/2022 16:10

I'm CEV and had a box arrive today which I hadn't ordered and no e-mail. I've tried to order online twice this week, once yesterday and each time have 'placed my order' to find that there are 'no delivery slots available'.

Original poster

MossyBottom · 02/04/2022 16:52

I've now had an email saying I can order free LFTs but that the PCR I was sent a few months ago in case of symptoms is now not to be used unless directed by a doctor.
A positive lft should be enough to get anti virals, assuming they think I'm eligable.

OP posts:

SpinningTheSeedsOfLove · 04/04/2022 07:56

I've still had no contact from my GP, Consultant or any NHS body whatsoever. I had none about the anti-virals either. The vaccines were a nightmare.

However I went on the government 'Order LFT' website yesterday, read all the bumpf about who is eligible, and saw that it definitely says 'immune suppressed due to biologics'. So I ordered some LFTs, ticking the 'yes I'm eligible' box when prompted. And it let me order a box, arriving today apparently.

I don't know how they're going to know people's eligibility - random checks?

nether · 04/04/2022 08:09

I don't know how they're going to know people's eligibility - random checks?

If you're in the main 3rd primary (critically vulnerable/immune suppressed) they link it to your NHS number or your name/dob which proves eligibility.

I suspect it's the same for those in the (larger) antibody/antiviral potential recipients group.

I ordered a box of tests just before deadline (critically vulnerable person in household) and two turned up. I thought it was just a random error, but perhaps it was the ordered one plus centrally generated order.

TypicaIMe · 04/04/2022 08:36

@nether

I don't know how they're going to know people's eligibility - random checks?

If you're in the main 3rd primary (critically vulnerable/immune suppressed) they link it to your NHS number or your name/dob which proves eligibility.

I suspect it's the same for those in the (larger) antibody/antiviral potential recipients group.

I ordered a box of tests just before deadline (critically vulnerable person in household) and two turned up. I thought it was just a random error, but perhaps it was the ordered one plus centrally generated order.

This is how I assumed they did it.

I've just ordered another box and it went through fine. As an experiment DD attempted to order some but she was told she wasn't eligible, which we expected would happen.

It's strange though given I was told that I was no longer eligible for antivirals when I had covid recently. I'm now wondering if my consultant had the correct information. Other people with my condition/medication have had antivirals, but someone I know under the same hospital rheumatology team as me couldn't get them despite being on even more hard core immunosuppressant drugs than me. Perhaps it varies from trust to trust?

dianthus101 · 04/04/2022 08:49

I had an email stating that I should receive some by the 12th April. The email states that I can keep the PCR test as they may want to do one should I receive treatment.

Workinghardeveryday · 04/04/2022 09:10

@SpinningTheSeedsOfLove I am on the same meds and azathyoprine. No one has ever told me to test before injecting.

Have you been told to?

TypicaIMe · 04/04/2022 09:35

[quote Workinghardeveryday]@SpinningTheSeedsOfLove I am on the same meds and azathyoprine. No one has ever told me to test before injecting.

Have you been told to?[/quote]
My consultant told me to test regularly through the week and always a few hours before u inject my methotrexate. However some people on here have told me that they've been told they don't need to test at all, and they can even continue with their medication while they have covid.

Perhaps it depends on an individual's medical history, or how active their disease is?

TypicaIMe · 04/04/2022 09:35

@dianthus101

I had an email stating that I should receive some by the 12th April. The email states that I can keep the PCR test as they may want to do one should I receive treatment.

I have never had one email from any NHS body for anything, apart from confirmation of my vaccination bookings. I wonder why they don't contact me this way?

dianthus101 · 04/04/2022 09:42

I have never had one email from any NHS body for anything, apart from confirmation of my vaccination bookings. I wonder why they don't contact me this way?

I think they are only sending them to people who are eligible for covid treatments. If you are eligible maybe it's because they haven't got your email? They will probably send a letter too.