Can't get a priority Pcr for Antivirals : Hi ya, I'm... - NRAS

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Can't get a priority Pcr for Antivirals

Dave74 profile image
106 Replies

Hi ya, I'm classed as CEV, but I've not been sent a priority pcr incase I get symptoms, spoke to 119, 5 times nothing, no clue at all, docs 3 times, no clue, spoke to the place that sends my letters about vaccinations etc and they think my NHS coding is wrong, hence why I have to chase everything, which is weird as I get all the shielding letters! Doctors have now changed but I'm no further forward as to getting one sent to me? Let's hope I stay OK as this is stupid?

Any ideas? 119 have been shocking!

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Dave74
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106 Replies
KittyJ profile image
KittyJ

Neither have I but I’m not going to worry about it and chase around trying to get it. It’s like everything else, it’ll take time for it to get sorted and everyone who is eligible to get them. I will worry if I get covid and then chase 😊

Neonkittie17 profile image
Neonkittie17 in reply to KittyJ

Many who have been wrongly omitted will want to chase it, just like the CEV errors, as it could be very beneficial to them to act swiftly if they are higher risk. Up to each individual patient of course if they want to chase it up, etc ... or not!

KittyJ profile image
KittyJ in reply to Neonkittie17

But we don’t know if we’ve been omitted. If we don’t have covid I don’t see the urgency. It might turn up tomorrow 😊

Dave74 profile image
Dave74 in reply to KittyJ

It's not been sent as my NHS coding is wrong so apart from this I've had to chase everything, that could have a significant impact on my health and my families health also! They have rectified the mistake but it shoukd never happen! We don't all have a happy go lucky attitude to this, it should of been sent by yesterday! I hope yours turns up and you don't have to chase them up of heavens for bid you get covid as my experience of this is they are shocking, and I don't want to wair for a pcr test that may show up!

KittyJ profile image
KittyJ in reply to Dave74

I haven’t a happy go lucky attitude and don’t take covid lightly but I won’t stress myself about it!

Dave74 profile image
Dave74 in reply to KittyJ

OK more relaxed than me!! I settle with that!! 😊

KittyJ profile image
KittyJ in reply to Dave74

Haha yes I agree 😊🤗

AgedCrone profile image
AgedCrone in reply to Dave74

There are 67+million people to be put into priority order, & two or more antique computer systems to be sorted out.You say you have family….I’m sure one of them would get help for you if needed.Yes I do know things should go more smoothly…but for now they are work in progress …so we just have to accept & soldier on….& try not get too stressed.

Dave74 profile image
Dave74 in reply to AgedCrone

Not stressed, sort of know the deal now with how this goes! 😂 2 years I suppose to make a few Improvements wouldnt go a miss surely!! It's laughable really, but as I'm self employed and deal with the public then I wanted to know that I had this test as a bit of security incase something did happen that's all? Apparently its all coded and the letters and kits are sent out to the relevant codes? Mines changed now so wel see? Thanks for your input anyhoo! 😊

Neonkittie17 profile image
Neonkittie17 in reply to Dave74

Just chase up for yourself .. no matter what anyone else has done or doing so what's right for you. You’ve been missed off before for other related issues so you know how it goes, as I do. Despite it being slow I don’t feel they have just two old computer systems (thinking of something like from The Prisoner !!😳) to do all those! I don’t feel it’s a case of 66 million/full population to assess .. it was the CEV/vulnerable list they were using as a guide I understood from what I’ve read. Do what’s best for you. Always. 💗

Neonkittie17 profile image
Neonkittie17 in reply to KittyJ

Fine if you feel happy re waiting. It’s what each person feels comfortable with doing. Depends on how immunosuppressed/vulnerable you are deemed to be too. (In my case, my vaccines haven’t worked to produce any antibodies. There are reasons some people on higher spec meds would like to be included.) Had I sat back and waited for inclusion in the CEV ... I would still be waiting. I was wrongly categorised. I believe the government/NHS advice Is still that if you haven’t heard by 10 January then phone a number etc for advice and obtaining a PCR, which seems to suggest people should have heard about the antivirals eligible cohort by now. 🤷‍♀️

AgedCrone profile image
AgedCrone in reply to Neonkittie17

I haven’t personally called that number….but I understand it connects to 119.

Neonkittie17 profile image
Neonkittie17 in reply to AgedCrone

Thank you. 🙏🏻 I haven’t phoned anyone as yet either. I will though to see what advice I am given. I thought on 10th people could have inundated the 119 line with calls so thought I’d wait a few days.

AgedCrone profile image
AgedCrone in reply to Neonkittie17

I reckon they will get around to me…I have had my Rtx jnfusion today…so Ishall be keeping my head down for the next few months.Hopefully my rheumy will agree a month in the sun is just what I need!🏄‍♀️✈️🏖

in reply to AgedCrone

Surely it has to be ☀️ 😃!!!! Glad you got your infusion 👍🏻

Neonkittie17 profile image
Neonkittie17 in reply to AgedCrone

Hope you get your holiday. I’ve no desire to go abroad and neither has my husband and would be a huge risk and not one I deem worth taking for myself, but good luck to anyone who can go with the knowledge and more security they’ve had all their vaccines and are as safe as they can be. 🙏🏻 Thank goodness we always got away on so many holidays each year prior to this madness.

AgedCrone profile image
AgedCrone in reply to Neonkittie17

Having spent years travelling for work..I don’t regard going abroad as a holiday…although I do love the warmer climes…I want to see my family & friends.From those I know who have travelled….the flights aren’t full & everything is well managed….so off I go to count my Dollars & Euros…but I do think I’ll leave the Rupees in the wallet for now.

Neonkittie17 profile image
Neonkittie17 in reply to AgedCrone

To me a holiday is/was getting away from home/work/the routine. To spend time alone with my partner is the main thing for us and visiting new places or favourite ones. Wherever I go doesn’t really matter. I have travelled extensively since my teens so a fair few destinations indeed, but I would be happy to go to the Isle of Lewis. To live there even better. For those who have no really problematic health issues, fully vaccinated and decent immunity can go more or less as they please at the moment.

CagneysMum profile image
CagneysMum in reply to AgedCrone

That made me chuckle AC 😆 I’m also just limiting myself to euros for now and have to say that I felt much safer walking around the Canary Islands on holiday than I did in any home/UK town I’ve recently visited. For me it’s the airport journey to these places that presents the greater risk that needs to be weighed up. 🤷‍♀️ Our flight out from Birmingham was half empty but the flight back was full … I was relieved to receive a negative PCR test on day 2 .

AgedCrone profile image
AgedCrone in reply to CagneysMum

Tenerife from. Bhx is where I shall be headed fist ….to stay in a friend’s apartment ….& just stare out to sea…as soon as I get even more blood test results.I’m beginning to feel like that comedian who did the .Blood .Donor sketch…saying “that’s a whole armful you’ve taken”this week!

I too had a neg PCR test on Saturday & a LF at the hospital yesterday….so for now I’m ahead of the game.

But tbh I am now just getting on with my life.I’m not bucking the system, but I’m not waiting with bated breath waiting for people in government…who are running around in circles to tell me what to do.,

Now to start sorting paperwork…my first task is to print off a BIG notice saying…STOP KEEPING PAPERWORK JUST IN CASE,!

CagneysMum profile image
CagneysMum in reply to AgedCrone

Let me know how you get on 👍

AgedCrone profile image
AgedCrone in reply to CagneysMum

Wel, I’m still in my PJ’s drinking tea, sketching out my itinerary! But By 10am…..I.’ll be all go

😂

3LittleBirds2 profile image
3LittleBirds2 in reply to Neonkittie17

Hi NK, i had Rituxumab on the 7th and 21st and I've heard absolutely nothing 🤷🏻‍♀️ Even though I fit the criteria as do others. I've not rung 119 as it seems they don't know anything about it even though it states on the guidance to ring 119 if not heard by the 10/1/22, absolutely no point in ringing my GP or Rheumatology either. It's just like a postcode lottery and I'm just completely worn down by it all as I'm sure we all are. It's exhausting and stressful constantly chasing things and making ourselves heard!

Neonkittie17 profile image
Neonkittie17 in reply to 3LittleBirds2

Hi 3LB, It’s just not acceptable that a lot of Rtx patients haven’t heard anything when it’s there on the websites but the NHS and government need to know it hasn’t gone smoothly for everyone on Rtx or indeed anyone on higher spec meds. It becomes have and have nots once again and that’s not the fault of those who have had their letter etc. I’m fed up of it all too tbh as it took took me from early April to end of December 2020 battling to get CEV as was missed off there too. 🤷‍♀️😑🤨 x

in reply to Neonkittie17

I’m on another high spec med and in Scotland. We were advised by text and letter (a few days ago for me) to ask for PCR tests online via the central NHS website, describing ourselves as priority key workers. I didn’t really grasp how until a Scottish admin on Vasculitis HU explained how they did this.

My PCR home test kit arrived yesterday. She advised they would ask about it in 48 hours but just ignore as it’s come from our CMO to do this and keep it as safety back up just in case. Maybe English people could use this alternative route if nothing comes by 10th?

Neonkittie17 profile image
Neonkittie17 in reply to

I think the system may block people when they input their postcode?

in reply to Neonkittie17

Yes you’re probably right. Makes me feel lucky.

Neonkittie17 profile image
Neonkittie17 in reply to

Yes I’d absolutely bet .. if I was a betting person .. that you’d be halted if you tried to access the Scottish website for a PCR as soon as you input your postcode! They’d have anticipated that I’m sure. I’m also sure I’ll be in luck soon with the eligibility as it’s bonkers I’m not included. As I say I don’t give up easily. I think it is a lot to do with luck too who you’ve spoken to and who has had the intelligence also to interpret the info they’re looking at to categorise you for the eligible cohort .... or not!

in reply to Neonkittie17

It does sound bonkers I must say. My coding was sorted at the start by my dermatologist who was concerned I’d slip through the net otherwise - so they emailed my redeployed rheumatologist and whoever was sorting out the CEV list on my behalf. Since then I’ve often worried that will fall off list but never have thankfully. I think it was done differently up here.

Neonkittie17 profile image
Neonkittie17 in reply to

I’m still on the previous CEV List or whatever it is called now .. highest risk?

Poshcards profile image
Poshcards in reply to Neonkittie17

dont even try, you wont get anywhere!!

Neonkittie17 profile image
Neonkittie17 in reply to Poshcards

I’ll try all that is needed. I don’t back off easily! Sorry if you’ve been meddled around. Others seem to have been successful and has been said, often it’s the luck of the draw who you speak to.

KittyJ profile image
KittyJ in reply to Neonkittie17

I was on the CEV list but still got missed and did chase it up but it’s one day after the 10th so with the post out here taking ages to arrive I’ll give it a bit longer. Of course it’s each to their own and maybe I’d feel different if I lived somewhere less isolated. Who knows. He’s sorted it now so that’s goood and what matters.

Neonkittie17 profile image
Neonkittie17 in reply to KittyJ

Haven’t seen Dave’s latest post but glad he’s sorted it out. If a letter is late .. Due to Christmas etc .: then it’s late. It was the way it was worded on the official websites which suggested to me that you’ve been missed off if not heard by 10th, so get in touch to try sort it. Anyhow as you say glad he’s got a solution now so worth him posting to get some help.

Dave74 profile image
Dave74 in reply to KittyJ

If I didn't chase anything I'd prob still be unvaccinated, it hadn't been sorted as nobody new there was a problem, so I would of continued to have gotten missed off everything! I'm not going to commend the NHS for coding me wrong and not sorting the issue, it's lucky I didn't catch it really then have to deal with it then!

KittyJ profile image
KittyJ in reply to Dave74

I know it’s been a mess, I was missed off the third vaccine/booster list somehow, I will just hope it turns up. Many people are yet to receive them so 🤞🏻

in reply to KittyJ

Me too. I have pro-actively sorted my 4th jab for this week as that seems something that will hopefully be protective and decrease my chances of testing positive.Am hoping a kit and letter arrive but if not I highly suspect that if I ring GP/Rheumatology/maternity/turn up a the hospital saying I’m immunocompromised due to treatment X that I take and pregnant and am positive and feel terrible that someone will do something helpful and offer me some

treatment!! 🤞🏻 🙈

AgedCrone profile image
AgedCrone in reply to

That’s what I like about you Gif…the eternal optimist.😌

Of course you will get some advice…my cousin gave birth to her second daughter in a taxi on her way to the hospital……she reckons taxi drivers have the best advice…so ask a Cabby!

That baby is now a Mother of three!

,

AgedCrone profile image
AgedCrone in reply to KittyJ

I agree….worst case scenario we call an ambulance…but best just to carry on being careful & accept the time has come to take back control of our lives.I know someone who wrote to their GP asking how to get access to the PCR test pack & was told to call 119…she is still going round in circles!

Neonkittie17 profile image
Neonkittie17

Yes, same here. 🤷‍♀️ Have a look back to GinnyE’s PCR Kit post and also another post re hospital letters, both referring to the eligible cohort for antivirals, etc in the last few days (near the top of the posts so don’t have to scroll down too far) and read these as they could be helpful you.

Dave74 profile image
Dave74 in reply to Neonkittie17

Thank you I will, I find it really bad!! 😔

Neonkittie17 profile image
Neonkittie17 in reply to Dave74

Hi Dave, There was some good info and discussion on those links. I got missed off the CEV and took me from April to December 2020 to get on. Do what you feel is right for you as if you are higher risk and need this security of something in place re the antivirals, then isn’t it why it’s been offered to people just like ourselves. To give patients some priority and security? Yes it is!! Did your GP or rheumy tell you you’ve been missed off with the wrong code? I haven’t heard from either since I wrote/emailed on 23/12. I’ll be chasing it this week. Good luck, Dave.

AgedCrone profile image
AgedCrone in reply to Neonkittie17

I’m seeing my rheumy this week…I’ll ask him to me his opinion….which I hazard a guess….will be a hollow laugh!

Neonkittie17 profile image
Neonkittie17 in reply to AgedCrone

Hi, I believe it’s more the GP who is providing the info for the NHS to Code it so I think rheumys this time aren’t so involved as with the previous CEV status decision.

AgedCrone profile image
AgedCrone in reply to Neonkittie17

I was joking…my rheumatology depart are head down get the RA sorted……they try hard..but every time I get a letter from the department another rheumy nurse is missing. My GP gets cc rheumy clinic letters…...but I don’t think she would dream of asking me how my RA is doing,

Neonkittie17 profile image
Neonkittie17 in reply to AgedCrone

I seldom ever discussed my RA with my GPs except when it was raging in 2013 and needed oral liquid morphine (nearly typed liquor .. perhaps that might have been a better option!) but they get the cc from my Rheumy just as I do so if they don’t read it or action anything then it’s up to them. They only tend to if you have an appointment with them. My rheumy is excellent and wrote such a brilliant plan of action and list of current issues to my GP in November .. but if they haven’t read it then .... It’s good you have an excellent rheumy too. It helps if you have a great rapport. My rheumy’s issue is her admin team. Not enough staff.

Kerensa56 profile image
Kerensa56

Hi Dave: I’d try your rheumatology dept: I emailed my help line, as thought they’d be busy. Mine were great with 4th vaccine help & even said ring them if positive pcr not GP/119. They also sent the original text re the pcr test which had link to order it but this seems to vary with different areas. Good luck: it’s a bit worrying when you ring GPs etc & they don’t have a clue I know 😉

Deminem profile image
Deminem

I just spoke with my GP to see if I'm down as CEV on their records. I get some letters but have to chase any actual help or vaccines. It may be due to the fact that the hospital dispenses my Enbrel meds not the GP. Anyhoo, he said ....."CEV has now been disbanded, and isn't a thing anymore."

net2012 profile image
net2012 in reply to Deminem

Yep same postition, get MTX on prescription from GP but Humira via hospital prescription and delivered to home, so nothing about Humira on my primary records. I emailed my Rheumy nurse on 20th October about the third primary and she sent a letter to GP and copy to me. 4th booster due end of January, and GP surgery are aware than I am going to get that. I think when this Covid is over and done I will have a chat with surgery and see if Humira can be put on my Primary records.

Deminem profile image
Deminem in reply to net2012

Right so at least you are getting somewhere.

My Doc said they used not to be able to add the biologic meds to our records for fear that the system may trigger them to deliver it. Where mine comes from hospital delivered to my home same as yours.

But he did actually attempt it while I was on the phone and managed to add it to my records today. He was hopeful that it may trigger some more help for me with future treatments etc. So yes do ask for them to update your record.

I love my GP, he is the best, can't fault him. I said I had one last question for him before we end the call. I asked him how he was, he said he was well. I asked how many times he'd caught covid and he said.....none! Which was a nice surprise.

net2012 profile image
net2012 in reply to Deminem

Yes I read on here that a lady had it added to her prescription list but STATED Hospital prescribed only. I will ask anyway because I think it is quite scary that if I was very ill and they checked primary records there is no note of me being on Humira. When enquiring at GP about the third primary, they could not see the Humira I had to tell them to go through Consultant letter from Rheumatology which states I am on that medication. I too love my GP practice, and no complaints always praise, and like I said when things become a little more quiet I will have a chat with practice manager.

Runrig01 profile image
Runrig01 in reply to net2012

I have had my biologic on my gps medical records and repeat prescription for several years. It should be recorded, so that it will flag up any interaction with new meds being prescribed. Here’s what shows on my medication list

.
net2012 profile image
net2012 in reply to Runrig01

Thank you that is a big help

Neonkittie17 profile image
Neonkittie17 in reply to Deminem

My GP practice lists my RA meds at the bottom of my script which are given at hospital or delivered via HaH/Sciensus and says ..... last issued by ...... hospital on ...... so it’s a record of all meds and states it’s isn’t from their practice too. It’s been this way for a few years now.

net2012 profile image
net2012 in reply to Neonkittie17

Thanks for that info, really helpful

Neonkittie17 profile image
Neonkittie17 in reply to net2012

Hi there net, I think a note dropped in the GP practice letterbox to ask the practice scripts administrator to organise the amendment of the script info would not be frowned upon by them, as it’s often useful for proof of your entire list of meds, both from hospital and GP origins.

Neonkittie17 profile image
Neonkittie17 in reply to net2012

I’d drop them a letter now. 💗

AgedCrone profile image
AgedCrone in reply to net2012

I wonder why as medical records can have private notes like DAB (daft as a brush) noted on them…they can’t just add (0n Humira)?

Madmusiclover profile image
Madmusiclover

I’ve JUST come off the phone from 119. Priority box for a PCR on its way to me more or less from what I could gather on my say so. How frustrating. I did have to call in twice as line went dead first time!

Madmusiclover profile image
Madmusiclover in reply to Madmusiclover

However they told me that my clinical status could not be altered via data resolution; and that she could not check it and that was down to my GP. Thank fully I’ve done that; I think.

Dave74 profile image
Dave74 in reply to Madmusiclover

What did you say i tried 4 times yesterday and nothing? 🙄

Madmusiclover profile image
Madmusiclover in reply to Madmusiclover

It arrived! 🤔

Picture of test kit
Deminem profile image
Deminem in reply to Madmusiclover

Oh I don't think that's what you think it is :/

See I called 119 yesterday and was told they don't send them from there. She said she will send me a PCR(normal one not one that triggers antivirals)as a "just in case"for speed of testing reasons, and was clear that it's not the priority box kit.

it came this morning It looks just like the photo you posted. Are you sure you didn't have crossed lines and your operator? Maybe they meant it's being sent out as a priority, and not the "priority box kit" itself.

Madmusiclover profile image
Madmusiclover in reply to Deminem

Possibly. I’ll settle for this one for now and call GP if I test positive in the future. Either way at least I’ve got a test kit ready if the worst happens.

Deminem profile image
Deminem in reply to Madmusiclover

Exactly,

We have a test to take quickly which is something.

I spoke to my rheumy nurse today about something else but asked about the Priority box scheme. She said if you test positive on PCR then call hospital rheumy. They then contact the antiviral team, who then assess if you get treatment. So at least I know what the procedure is now.

Madmusiclover profile image
Madmusiclover in reply to Deminem

My rheumy told me to contact GP. I will of course contact them as well! 😉

Madmusiclover profile image
Madmusiclover

I think it’s the luck of the draw who you get. I pressed option 1 (pcr tests) and after many more layers of options told her I was CEV and had not received my PCR test. She took all my details and said it would be with me in 48 hours. I asked will it be marked ‘priority’ she said yes.

in reply to Madmusiclover

Job for tomorrow! I have been putting off the call looking at the difficulties everyone else has had 🙈

Carolsos profile image
Carolsos in reply to Madmusiclover

I have just rang up for PCR and was told cannot get one unless I have covid, she did say if I send you one out it will not be a priority one only a normal one. I think if I get covid I may be too ill to ring up! I did say I was CEV and told her what medication I am on but apparently that is not enough! She said you should get a letter, but I have never had any letters in the past so am not holding much hope out for one. It took a long time to get through with all the different choices.

tigerfish profile image
tigerfish

I've just rang 119 and was told they don't send them out. They said I had to be put on the list by my GP or the hospital. My GP said that I had to ring the hospital and when I rang the hospital they said they weren't doing a list.

Deminem profile image
Deminem in reply to tigerfish

Same! What a run-around.

wishbone profile image
wishbone

It could be a long wait if you live in Wales as there's no mention of us being provided with a PCR. Hence I've been proactive yet again and acquired one myself even if it did mean telling one or two porkies on the application form...naughty boy as I am.

Neonkittie17 profile image
Neonkittie17 in reply to wishbone

Hi Wish, not naughty at all. It’s called self preservation. I will request one via NHS on the grounds I’ve been told to as we have been told to on the advice to former CEV etc.

wishbone profile image
wishbone in reply to Neonkittie17

Howdy Nk, don't feel guilty in the slightest...a man's gotta do what a man's gotta do, especially so after negative experiences with the NHS, which I've spoke of in previous posts. l'll be pro-active again too when it comes to getting my 4th jab.

in reply to wishbone

The porky is actually what we are being advised to do in Scotland by letter and text from CMO - it even gives a diagram where we are told to click yes to being priority workers and yes to symptoms.

Black and white extract from government CEV letter
wishbone profile image
wishbone in reply to

Well done the CMO. I can't remember what I clicked, but don't think it was essential workers, which looks like the way to go. I can't understand why other governments haven't followed England by providing PCRs as 5days is a pretty tight timeline between a positive LFT and being treated with antivirals etc.

in reply to wishbone

Agree. We got off to bad start with this here as Scottish CMO sent misleading letter to CEV before Xmas. Then we made up for it after xmas when suddenly clicked that these monoclonal antibodies could be the ticket for freeing up CEV immunesuppressed people at long last. Reading posts here we are doing it better than England now but someone has commented saying they tried same route as me but told no PCRs available. I only knew what to do because I have Vasculitis so use that HU.

wishbone profile image
wishbone in reply to

Possibly too few Welsh posters here to tell, but except for the above, I presume we are doing ok. If there's a shortage of PCRs, and if, as they say, the LFTs are pretty accurate when done properly, then it might be a good idea if CEVs can access antivirals with just a positive LFT and not having to wait for a PCR result. That said, I have a feeling it's a complete non-starter and just wishful thinking on my part.

in reply to wishbone

I have some really good friends from a different rheumatolgy community who live in Wales. I have MCTD - don’t use the Lupus community much but I notice in my feed a lot of posts about this from Lupus peeps so maybe worth going on there to ask or read? I think the gist was that at least one couldn’t get anywhere on the 119 or the GP or rheumatology to access the antibody treatment there once they tested positive. Maybe wrong as I’m not much here more Vasculitis as there’s a Scottish admin who is on my meds and updates a lot.

wishbone profile image
wishbone in reply to

Sorry for the delay replying....an early lunch was calling. :-)

I asked rheumy what the procedure was for antiviral treatment and was told if I test positive via a PCR, I need to call them as they have an email and can refer me to the treatment team so they can contact me. However, advice from my GP was slightly different .... he said that following a positive LFT I should send off a PCR (he was pleased I'd used my initiative and allready got one) and if it's positive then I should go straight to hospital and not wait for the treatment team to contact me. If that was something of a surprise he then advised me to go straight to hospital if I have symptoms and a positive LFT. Not 100%, but I'm pretty sure he told me to send off a PCR as well, which I would do in any case, but he definitely told me not to wait for the result.......decisions decisions??! :-O

in reply to wishbone

Oh that’s making things even more complicated then! I’m complicated as am between healthboards but there’s a number to ring on my CMO letter if I get a positive PCR result. I think I’m my case I’d use a lateral flow first as I have quite a few and frankly my flares are very like the listed symptoms so I’d be hard pushed to know - other than the temperature which is usually very low.

My adult son’s got omicron and says he hasn’t had the loss of taste and smell but described my flare symptoms to a tee so I’d be worried about wasting the hard won PCR home test on a flare up tbh!

wishbone profile image
wishbone in reply to

Your son having omicron must be a concern. I hope he only has it mild as is usual with most healthy people, plus you manage to avoid it.

The shielding type letter I had from the Welsh gov in December gives an online address to apply for a PCR, which I presume is where I got mine from. I'm leaning towards doing what my GP advised, after all he's more familiar with my health conditions than anyone else, or should be. Just hope I mange not to get covid, which obviously avoids having to decide one way or the other.

Thanks for the replies and take care.

in reply to wishbone

Well I was in hospital for my infusions for 3 days last week when he found out so it was scary on day 1. And he felt lousy on day 1 but is fine now a week later although still testing positive I think. But he’s just 30 and was ironically due his booster that morning a week ago - having not been able to book one sooner. So he’s not been asymptomatic but is fine - just regretting not being able to visit us this coming weekend.

I feel rather emotional and liberated by the knowledge that these monoclonal antibodies exist as an option I’d be eligible for now. I’ve had 4th booster and am even thinking I might be able to plan a trip to visit family and friends in London next month for my other half’s 60th. I feel it’s high time to get back something resembling a life now after two years of shielding away, only going out for hospital appointments and watching all my friends and family members live relatively normal working lives.

Hope we can both avoid Covid but if not then it’s only omicron, I’m 4 times vaccinated and an anti viral option exists at last 😊

wishbone profile image
wishbone in reply to

Bad luck you're son not having his booster a week or two before he was infected. He probably would have had fewer symptoms but at least he hasn't been too bad with covid. Enjoy your trip to London. :-)

Stayloose profile image
Stayloose

A crumb of comfort might be that people (if not after antivirals)no longer have to do PCR tests after positive lateral flows. PCR tests should therefore be more readily available and processed quickly.

Runrig01 profile image
Runrig01 in reply to Stayloose

That’s only to those that are asymptomatic. If you have symptoms you still need to do a PCR. Also the CMDU will not accept LFTs it has to be a positive PCR to get the treatment

Stayloose profile image
Stayloose in reply to Runrig01

I realise it's only the asymptomatic who don't have to do a PCR after a +LFT but I'm hoping that's a LOT of people not now using PCR tests. It is frustrating when it can't be resolved when treatment is so time sensitive. I understand CMDUs need a +PCR result as +LFTs can be faked.

Lizard28 profile image
Lizard28

I got my letter from GOV Scotland telling me that I would be eligible for the antiviral meds if I get covid and will get priority pcr but I could also get a free one online if I tick the box that I’m an nhs worker. Well as my friend tried 3 days to get through to book a pcr test and eventually told her the only appointment was 70 miles away, she didn’t bother. I then thought I will try and get my pcr test sent to the house like the letter said. Easier said than done, every time I try to do it online it comes up “None Available, try later”. I just hope I don’t get covid. I doubt I’d get the meds on time within 5 days. I will keep trying to get a pcr test as there is no way I could travel miles to get a test.

in reply to Lizard28

I was lucky then as mine arrived yesterday in the post. I did have to say I was an essential worker with symptoms though and give my CHI number.

JEM95 profile image
JEM95

I ordered a PCR online - I read a post on here suggesting to do that. It was quick and easy to do. I followed the advice and when prompted to make choices said it was advised by GP.I’m not going to try and sort out my coding problems, but I’ll be ready with a PCR should the worst happen, and will be ready to chase the dept that issue antiviral meds. I think there are too many breaks in the chain with depts not knowing who does what and when.

Keep safe peeps x

GinnyE profile image
GinnyE in reply to JEM95

Just got text to say my PCR test will arrive today. I requested it on line the way you describe (might have been my post). It won’t be linked in to Deployment Unit but if test positive can ring 111 or GP to try for antivirals.

JEM95 profile image
JEM95 in reply to GinnyE

Excellent. That was my thought too - I’ll sort it out if and when. Keep safe x

bpeal1 profile image
bpeal1

Being CEV doesn’t make you automatically eligible for covid treatments. Also, you can (like me) not have been classed CEV but still be eligible for treatment.

The criteria for treatment can be found on this website in the ‘What treatments are being made available for Covid-19?’ section. rheumatology.org.uk/practic...

If you’ve not already watched it the NRAS video is very helpful. nras.org.uk/2021/12/23/covi...

GinnyE profile image
GinnyE in reply to bpeal1

Government guidance 24th December 2020

“For people whose immune system puts them at high risk“

It states “Who is this guidance for.”

And goes on to state people who have

1. Eligibility for a third primary dose.

It also lists conditions this applies to, one of which is -

“certain autoimmune or inflammatory conditions (such as rheumatoid arthritis or inflammatory bowel disease”

This advice does not seem to differentiate conditions and treatment like the BRS document does. So where does that leave us??

bpeal1 profile image
bpeal1 in reply to GinnyE

I agree it’s not clear. However, the list on the BRS site is the same as the list sent to the GPs and hospitals. I think the criteria is different to the eligibility for a third dose. Somewhere else (which I can’t find at the moment!) it talks about advice for people who have either had a third primary dose or are eligible for treatment which again implies the criteria are slightly different.

It is all very confusing!! I think, if you think you may be eligible to ask to be referred to CMDU if you test positive, I’m sure their screening questions will work out if you are eligible or not!

If you’ve not watch the NRAS video it is very interesting.

GinnyE profile image
GinnyE in reply to bpeal1

Yes, my PCR test arrives today (on line ordering) and if test positive will ask for a referral. It's a plan!

Runrig01 profile image
Runrig01 in reply to GinnyE

Although you are correct re it stating rheumatoid arthritis, it does seem to depend on the medication you take for it. I know of 2 RA patients who when triaged by the CMDU consultant were declined because they did not meet the criteria re medications. So it does seem to be related to your meds. One was on 15mg MTX, and was told has to be >20mg, which is the same rule as the 3rd vaccine criteria. So I suspect it follows the same list of meds

GinnyE profile image
GinnyE in reply to Runrig01

Yes, that makes sense doesn't it. I am on 20 mg methotrexate so my GP said borderline so I guess it would depend on the CMDU. If I don't need it then that's fine. Don't want to use up meds that others need and not me.

Evie3 profile image
Evie3

I did read they were being rolled out up to 10 Jan. not that that helps u

12Gemini123 profile image
12Gemini123

HiFrom my experience, I used a home pcr test that wasn’t linked to me (I made a mistake) but phoned 111 and they found my positive pcr and they said not to worry it would be picked up & linked to me. They also made the referral to the correct department who called the next day and set the medication up.

My rheumatologist also said he could have set it up but my GP knew nothing of it and I was the first to call about it.

Leics profile image
Leics

The only thing I wonder about is I’m not currently on RA meds so if they go on meds alone I’m wondering if I’d be picked up as I’m at very high risk. This is because I’m severely immune suppressed which won’t ever change. I know it’s generally a box ticking episode with these things. The good news is as far as I’m concerned that I found 111 and 119 extremely helpful when I’ve needed help and I received my PCR before the new year which I’m grateful for and it does look as though it’s a priority one linked to me. Let’s just hope I don’t need it.

Poshcards profile image
Poshcards

exactly the same for me, it is so stressful x

Amb1xkr profile image
Amb1xkr

Hi DaveSorry to hear you haven’t received your pcr test. I read online yesterday that immunosuppressed people who test positive on their pcr test sent out to them aren’t guaranteed to receive the anti viral tablets 50% of them will be monitored without medication and the other random chosen 50% will get the tablets. This will give indications back as to how much anti virals are needed. I was shocked as I thought they were to be given to all immunosuppressed. Not a random selection. I know this doesn’t help you get a pcr kit but no guarantee of benefit once you manage to get one!

aliplayspiano profile image
aliplayspiano

I received all the letters telling me to shield and also the letter saying I was eligible for a third primary vaccine dose. My understanding from the NRAS seminar before Christmas was that not all CEV people qualify for the anti virals. It seems to depend what drug you are on and for certain drugs whether or not your disease is active/unstable or not. I am assuming that is the case for me as I am just on Tocilizumab and my disease is stable even though I am only on half dose of toc due to having low neutrophils/white cell count. I received all the letters telling me to shield and also the letter saying I was eligible

Jimminey profile image
Jimminey

PERHAPS THE NRAS CAN ADVISE us on how to find out if we are on the list of those eligible for receiving antivirals/monoclonal antibodies in the event of getting Covid - especially for those (like myself) who have not received a PCR test through the post to keep for if and when needed?I rang 119 as advised by the Gov.UK website and was told that they didn't know if I was on the list! (they were going to send a PCR test to me, but I want to know - should a PCR test be positive - if I will be contacted to receive antivirals/monoclonal antibodies)

strongmouse profile image
strongmouse

Don't know if this will help but if you can get a PCR test (try tel.119 and ask for one) then you can register it via the following instructions which includes your NHS number so that they can tell if ypu are eligible for treatment and contact you.

gov.uk/government/publicati...

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