I've had a letter from my consultant to say I should have antivirals if I contract the virus and that I should keep a test kit at home. I've been trying to order some for about 2 weeks and the NHS website keeps telling me that there are no delivery slots. Does anyone have any idea how we get the kit? I assume the NHS website ordering will close in a couple of days and are inundated with orders, which is probably why those of us who need them are unable to order.
Does anyone have any idea how we get Coronavirus test... - NRAS
Does anyone have any idea how we get Coronavirus test kits?
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TytoAlba
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Wondering the same too. 🤷♀️ Hoping there is some way to be able to prove being immune suppressed to obtain the LFTs. Would be good if they had a plan in place before 1 April. (This could be another difficult area to navigate just as the antivirals has been for many.)
I'm glad I'm not the only one who feels like a mushroom (in the dark and in the mire). I used to test myself a couple of times a week but ran out of tests a couple of weeks ago so I've just stopped going out since then. I was expecting for it to be easy for us to get tests, particularly when the NHS website says they need to keep tests for high-risk people.
Yup, mushrooms we are! I’m still shielding and I don’t go go out except blood tests at the mo, but many people need to go out and we need to access the tests too so we can access antivirals. Hoping the government don’t drag their heels and make us wait too long to put a procedure in place. It’s only a few days till 1 April. I did ask my local MP about this recently and got a reply. She said she wants free testing for household members too and carers and not just the immunosuppressed/vulnerable person. Said she’ll keep pressing the government on all of these issues around antiviral access and testing and Evusheld availability.
How lucky are you! I tried emailing my MP and got a computer generated message saying he doesn't respond directly to constituents 😒
Surely that’s part of their job! 🤷♀️ I also emailed the shadow minister for the disabled (who has RA herself) and I didn’t expect a reply as her website said she only replied to her own constituents. She replied the next day and said she’d continue to push these matters whenever she had a chance to and also to raise questions in the HOC.
You'd think that communicating with the people he's supposed to represent would be a quite important part of what they're paid for but obviously not if you live where I do. I've tried contacting him on several occasions over the last few years and always get the same response. Lord knows why he keeps getting voted in but he does...
He does sound quite disinterested. Yes, I’d think too he should be listening/reading his constituents’ letters/emails and replying/trying to help. 🤷♀️ I’d want to phone his Secretary and ask if he ever responds!
• in reply toTytoAlba
Bit like my GP!
I am wondering the same! At the moment I can access tests via work (university) but we’re going to run out soon! I wrote to my MP too saying I felt that not just us but also members of our family/carers etc needed access to tests to protect us. She agreed and said she was continuing to press the government on the matter. My family always test before visiting but if they can’t access tests anymore that’s not going to happen! I have suppressed immune system and my white cell count and neutrophils are always low. At the moment my colleagues are also testing twice a week as well. That too will end!
I’m shielding so the testing for visits doesn’t apply at present for me, but it’s not good at all to those who rely on this. 😑I hope the government are going to announce something very soon but probably at the 11th hour as I just read an article from the BMA (link below) saying if NHS staff aren’t allowed to test twice weekly then that isn’t going to be safe for patients going for essential appointments and procedures. My local MP has said she will press for the continuation of the free testing for those family members and carers, etc of the vulnerable/immunosuppressed after I emailed her.
Strangely enough without asking a set arrived this morning by post. No idea why but I suspect I'm on a list somewhere as have a PCR and now a box of LFT
I got an NHS email 3 weeks ago from Prof James Palmer, National Medical Director dated 14.3. which had a unique reference number but was the same letter I’ve got from my rheumy and immunologist re anti virals/accessibility, etc. Then a week after the email I got a red priority box. I already had been sent the standard one after phoning 119.
That’s strange so did I!
It has been very erratic, but I’m grateful for what they’ve done but frustrated for those who haven’t got what they should have. As others have posted on here they’ve been eligible for anti virals with a LFT test.
Surprisingly so did I ML….me who searched pharmacies all over the Christmas period & never got any ….now seem to be on someone’s list…I even got an email saying they were coming.So as I only test when I think I have been in a crowd of people I don’t know…which is not often…..this box should last me around 7 weeks…by which time things maybe clearer.
Me too! I got sent a priority PCR kit over Christmas which is in the cupboard for as and when it’s needed and then yesterday I got some LFTs in the post so I’m hoping that’ll happen regularly as it’s useful to have them sent rather than chase as so many here are having to do.
I got a random box too yesterday (also kent) x
• in reply tomedway-lady
Hurrah!
Do you mean LFTs ? I saw single ones in Tesco today for £2( I thought they were free 'til April 1 but there you go )
I'd also read somewhere that immunosuppressed would still be able to access free ones but I've no idea how or where.
Given the surge in cases at the moment, I would have hoped they'd cancel the 1st April deadline.
I managed to order some Friday evening after trying for several days - just lucky I guess 🤷
My husband was sent LFT tests without requesting them. He is on the red box pcr scheme for priority access to antivirals. I am on methotrexate and adalimumab, this makes me entitled to the extra jabs but not the free testing. I'm sure we will be a mix on here depending upon the drugs we are prescribed.
I have had the standard PCR box sent in late January then 2 weeks ago received the red box priority one.
I’ve still not received a red priority test kit. However, when I tested positive on a lateral flow test I had no problem accessing antivirals. I phoned 111 and told them I was on Rituximab and it was all sorted very quickly.
There just don't appear to be any lateral flow tests, I've tried to order online several times a day for the last two weeks and always get as far as the end of placing the order when I get a message saying there are no delivery slots. None in pharmacies around here either.
Glad you got it sorted quickly. I think the R word may have had something to do with it.
That’s interesting. I got a letter saying I qualified for third primary dose and then 4th (booster) but have not received either priority pcr test or lfts. I assume it’s because I’m just in tocilizumab and nothing else.
As far as I know if you are aged 75 or over classed medically vulnerable you can still order them. Don't know if the is England only
Keep trying. I managed to order some the other day at about 7.30am. Apparently they release more as the day goes on but I’ve not been successful at any other time.
You can buy LFTs from the U.K. Meds website which sells lots of good quality PPE including the recommended FFP2 and FFP3 masks.
Thanks Lolabridge but I'm a senior citizen already struggling to exist on my state pension. Buying test kits at £4.78 each would be the straw that will break this particular camel's back.
I have been trying the last few days and have just managed to order some now, so might be worth trying it now if you read this x
Thanks for the heads-up Julie, I tried ordering just a few minutes after I saw your message but got the usual "no delivery slots available" message so they must already all be gone. Did you say you did have symptoms or that you didn't? There doesn't seem to be anywhere to say you're high risk, unless someone's managed to find something to click on that I haven't.
I’ve been having issues trying to get a PCR test as never received one on post or the letter. Our Rheumy team sent out a letter to all stating have a test kit ready at home & a link to 119 should we require one. It clearly states press this button at this question etc but it just dosnt work. Last night hubby just order one for me as if I had Covid instead. What a carry on it was too. It all seems very random 🙁
I had the same letter and instructions. Like you I had to order the pcr test as if I had covid as the button didn't work. I see a Sheffield rheumy consultant. At the weekend received a letter from my GP saying that I was entitled to a further covid vaccination but as they were not doing any more vaccinations at present I need to make my own arrangements!! I've had my three primary and a booster in January. Not sure if I am entitled to another booster yet as 6 months haven't elapsed. As for managing to obtain some free lateral flow tests I am completely stymied. My local Boots want £4:99 for 1 test. The govt need to step in and sort this out especially profiteers.
I've just had my booster for tomorrow in a particularly high-risk area cancelled because all the staff have Covid - ironic isn't it? There aren't any vax appointments until mid April but hopefully that will give me the chance to find a covid test before I go for it. There's always a bright side 😀
Its all a bit of a mess tbh isnt it?. Are you sure your booster in January wasn't a 4th vaccination? Just a thought. I tried calling 119 yesterday telling them I had booked a covid test to have at home but dont want to use it currently. He understood but couldnt really help me to explain if it would be linked to anti virals should I need them. I dont know who else to ask tbh so just have to keep my fingers crossed for the best. take care x
I had a 3rd vax in January and the booster today but I've also had a letter today telling me to book another vax so I'm completely stumped about what I'm supposed to do. They closed down the drive-through centre I've been for vaccinations before and the only available location was a pharmacy in a town a few miles away. Although there was a notice on the door of the pharmacy saying to please wear face coverings, it was teeming with people without masks. The NHS website says that the only place where LFT are available at the moment is the Isle of Wight. I actually feel more vulnerable now because I know I can't get a test if I develop symptoms so won't be able to access antivirals either.
It really is a mess & so stressful too. We managed to order 2 packets just before they stopped them but now we darn't use them & keeping them for real emergencies only which isn't great is it? My friend who's on Biologics got a packet of LFT's through her door as have many others but as usual i've been missed off a list somewhere. Can you ask any friends or family for a few? I'm due my next vaccination in 2/3 weeks but not heard anything yet about booking it. Hope you can get something sorted out soon.x
I take biologics, MTX and other RA medications and didn't get LFT's sent automatically but I'm all sorted now after calling 119 on 1st April and said I was worried because I'd been sent a letter saying I was supposed to get antivirals if I have a positive test but how I hadn't been able to get any tests and I was still waiting for my red box kit since January. I got to speak to the most helpful person who asked me a load of qualifying questions, arranged a PCR delivery and told me to go back to the NHS website because immunosuppressed people can still get kits and replacements if we need them. There were delivery slots available when I tried because people who aren't high-risk can't order any more. I was advised to use a test if I have symptoms, which have been increased to include new ones nhs.uk/conditions/coronavir...
I'm not entirely sure about my next vax but can't have another one for ages because I've only just had one so it's nothing for me to be concerned about at the moment. The NHS website has all the info about who qualifies and when you should book your vaccination. nhs.uk/conditions/coronavir...
Thank you so much for your response which is really helpful. I will try 119 again & check website. I've no idea why this is so random but fingers crossed this time. I contacted NHS England to see if they could tell me whether I had been missed off a list as I hadn't received a letter etc & they responded telling me that each condition is allocated a SNOMED code which is placed within the patients record. In order to have received a letter or text from NHS England one of these codes needs to be recorded in your medical records. it says only GP's or Trust specialist are the only people who can access our records to ascertain whether the code has been placed there or not so to discuss it with my GP. Ive managed to get a call back for 19th April so I hope that will shed some light on things. I can see my vaccination being delayed but will try to go ahead & book one. thanks again really useful x
Hi Just a little update. I rang 119 again & like yourself managed to speak to a lovely helpful lady this time who knew exactly what I was talking about & has hopefully sorted it all out. I should have a Priority PCR test arriving in 2 days & LFT'S in 3 days & can order more if/when required. It was so quick & simple I could have hugged her. It seems its all a matter of speaking to the right person. So thanks to your advice I'm getting sorted which is a load off my mind. Just my vaccination to sort now. Thank you again x
I received two boxes yesterday that I hadn’t asked for . I’m presuming they’re from the government and not a particularly rubbish late Mother’s Day present 
It doesn’t solve your problem but I’ve just had a random box delivered yesterday which I hadn’t ordered. I’m wondering if they’re sending them out automatically to those of us who are cev/immune suppressed. Hope you get some soon x
I have just ordered some LFTs successfully online for delivery by post. I’m in England.
Hi, I have been ordering a box a week for the last few weeks. I found ordering about 8pm seemed to work. Yesterday the one I ordered arrived along with an extra box,like others on this page. There must be a list somewhere.
I got the letter and called 119 as it stated. After being on hold for over 30 minutes I ordered one online. I lied and said I had symptoms. Now being pestered about returning the test but at least I have it now.
Go on the nhs site after 1pm. I can usually get them then. They’re only supplying so many now as they stop being free ftom April 1st (how ironic is that). You just have to keep trying throughout the day I’m afraid. Good luck.
I live in northern Ireland but I've had a letter about how to go through the system to get a PCR test so we can then get antivirals.Perhaps you can do this as well.
I think you will be able to buy kits also. In southern Ireland they have to buy them but you get them in the petrol garage and supermarkets. I suspect that's the way UK will go.
I have been trying to get LFTs. I asked in the pharmacy yesterday and was told the government wants people to stop testing as “Covid is no worse than a cold or flu and we should just get on with it”!I wish it was that easy for us immunosuppressed peeps.
A bit of an unfeeling statement to make.
Apparently, the pharmacy I use had loads of them delivered last week and were giving away as many boxes as people asked for because they wanted to clear all their stock before 1st April. It would have been good if they'd have contacted immuno-supressed people before giving them away to perfectly healthy people. They must know who we are because they dispense our medication!
They are currently sending out LFTs to anyone on the level of immunosuppressants that would require treatment. Mine arrived a few days ago. You can access the antivirals by registering your LFT result on the government site. If they don’t contact you within 24hrs, then you ask your GP or 111 to refer you to your local CMDU unit. The LFTs are only intended to bd used if you develop symptoms, they are not intended for family members testing prior to visiting you. I don’t know if they automatically issue another box once you’ve used all 7.
Search……Pharmacy codes for collecting lateral flow test kitsThen u take the code to any participating chemists…think it shows u somewhere🤷♀️. However I tried three chemists the other day and they didnt have any. Will keep trying☹️
Search…pharmacy codes for collecting lateral flow testsHowever I have tried 3 chemists in my area and they have none. Will keep trying.
(Apologies if posted this twice☹️)
Where we live (north midlands) you can walk into a local chemist and pick one up off the counter or ask for one.
Unfortunately, there aren't any at any pharmacies in my area in the east midlands. My regular told me they've been told to clear their stock and they don't think they'll be getting any more.
It seems likely that that will be the situation shortly everywhere. We are going for our 4th jab this Sunday at the same Pharmacy. We have never required them but we’re still given for 4 weeks in a row a test kit each time we went in to collect medication orders, they put them in the bag without asking.
I went online in the early hours of Saturday morning (about 3 a.m.) and ordered some which arrived yesterday.
I've been trying almost every hour between 6 am and midnight but tried at 2am today and there weren't any then.
My son is having the same problem. He has covid and needs to know when he's clear for work. My daughter in law was trying at the same time and managed to get some ! No logic . I just hope that when people start trying to sell their stockpile online that they are fined as packs are not for resale as far as I'm aware
I got mine from the chemist, but that was months ago. I asked for 3 not realising that meant 3x7 🙄. Gave one away, but glad I have them now..
I'm in Scotland. You should be able to get lfts from a pharmacy. I was given some at my GP surgery when I went for a blood test. Just asked. Both free. I suspect that arrangements vary across the uK.
I don’t have the answer on the test kit issue other than I have been issued with a priority PCR test by the respiratory team as I also have severe asthma. However on the treatment side of things I can advise what happened to me. I tested positive on a Friday on a lateral flow test, phoned the GP who immediately made a referral for treatment and within two hours the hospital called me to arrange for me to go to have the monoclonal antibody treatment. I completed the priority lateral flow test and was amazed to get the result later the same night. Having used the test I was then sent another. Essentially therefore I believe that they are ready for us. I imagine most of us will be on some sort of list at our GP surgeries.
I've got COPD and a dicky ticker as well as RA but with the exception of the Rheumy letter saying I should keep a test in hand, I haven't heard anything from anyone else. It's just very frustrating that the NHS website says that tests are for high-risk people but high-risk people can't get them because there's no box to tick that says you're classified as high-risk.
That’s great - where are you? It’s different in different parts of uk
I think it's easier in Scotland, Wales and N. Ireland than in England and it seems that some areas of England are easier than others. I'm in the East Midlands and there haven't been any delivery slots for us for 2 weeks now. I'm just hoping all will become clear on 1st April but not holding my breath as I'm still waiting for the one that I've been told should have been sent out at the beginning of the year.
The advice of our chief medical officer interviewed on radio 4 is as that if you’ve symptoms try to isolate even if you can’t get tested. That’s easier said than done though.
I think that advice is appropriate for normally fit and healthy people and I'd automatically self-isolate if I get symptoms without having to be told to do it. I don't think that they've thought about how stressful it's going to be for high-risk people worried that they could contract the virus but not be able to get the antivirals they've been told they can get if they test positive.
Like yourself TytoAlba I used to test twice a week due to fcontact with others who are not at risk, but are out in the community. Now I have come against the same no delivery slots. I have found that on line you can buy them as cheap as £1.39 from Lloyds chemist , but that is only one test so for seven it would be around ten pounds, with the prospect of rises when demand gets high. I feel those with health risk as on the vulnerable list should be given priority for access to tests, vaccines and the new treatments when you have the virus. Hope things change in the near future.
My wife already checked out Lloyds yesterday when she collected my monthly prescription and was told that they didn't have any for sale because they hadn't come in yet. The assistant told her they'd had several bi boxes of free ones delivered last week and had been told to give them all away so anyone who asked for them got as many as they wanted. Shame they didn't keep a few back for people they know are immuno-suppressed 😟
Totally agree with you , hope you get some free ones in the post.
I still haven't had the first one they were supposed to send out in January. I even tried saying I'd got symptoms and was offered a walk-in test but the NHS website said they had no home test kits.
Not looking good is it , if they are not careful we will end up with another pandemic & lockdown. Precautions have to continue including regular testing. Take care
I've just received a box of lateral flows through the post that I hadn't ordered. I'm immunosuppressed.
I don’t know but I seem to be on a list for once as I got another home pcr test kit thro the post this week! Now have 2 at home last one was sent 3months ago
Same here and the woman I spoke to on 119 at the end of January said they’d run out of priority ones, so maybe they’re going back through and sending what they’d intended to before.
Fingers crossed I'm on someone's list somewhere.
🤞🏻🤞🏻
I've just discovered that the Government has today published new guidance that says that eligible people can still get free tests but only if you develop symptoms and also how to get replacement kits, which implies we should all have been given one. I'm not sure how it will work because I can't find the document, just news reports, but hoping that all will become clear by the end of the month.
Presume it’s on an update on the official government website. I haven’t had chance go look as yet since yesterday.
I can't see anything changed yet. Today, there are none available each time I've tried to order and the only place in England that's showing they have any is the Isle of Wight.
Someone on here said recently they were told to try later in the day as they make more available then?
There has been a stand in the car park of a local retail park giving them away some weekends. I have seen them twice, I don't go there often. The first time they were giving away boxes of twenty, this last Saturday, there were boxes of seven. The man asked how many were in my household, I said just me but he gave me an extra box. They were being given to everyone who went and asked, not just vulnerable people.
Yes, I think a lot of places were the same because my pharmacy apparently had hundreds of boxes of them delivered last week and were told to give them all away. We only go there once a month to collect my meds which we did on Monday and were told they don't have any NHS ones left and they don't have any to sell either. I've just been for my 4th vax today and virtually no one in town was wearing a mask. Being in the position where I'm unable to test myself if I feel unwell has made me feel more vulnerable than I did before.
Yes they were doing that in Ullapool today
Try here, tests available again if you are CEV. gov.uk/order-coronavirus-ra...
You are not eligible for free tests if you were classed as CEV, only if you are eligible to receive antiviral/antibody treatments.
The eligibility criteria for antivirals/antibody treatments can be found in the appendix of this document england.nhs.uk/coronavirus/... There is a picture of the relevant section below.
It’s worth also noting that some people who were not CEV maybe eligible for treatments. I was never classed as CEV but I am eligible for treatments as I am on Rituximab. The reason why the criteria are different is because most CEV people will be well protected by the vaccines so treatments are only being made available to people who are less likely to have made a good response to the vaccines.
Photo of NHS website
I used the wrong terminology.
Not to worry, it's difficult to remember the current terminology because it keeps changing. I knew I was eligible because the concoction of medication I take falls into the currently published criteria and the Health Trust had already sent me a letter back in January about antivirals, I just hadn't been sent a red box kit and hadn't been able to get any LFT tests via the NHS online ordering for weeks. I managed to get my PCR kit ordered on Friday via 119 and started another thread with some up-to-date ordering information that the really helpful 119 person suggested I should post in this forum when I told him how difficult it has been for some immunosuppressed people to access test kits. It's far easier for us to order LFT's as well via the NHS website since 1st April and not everyone is eligible any more.
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