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Original poster

How to get antivirals quickly? 111 not phoning back, CEV pensioner

22 replies

TurmericFan · 11/06/2022 19:34

A member of my family yesterday tested positive for the first time, having had symptoms (bad cough) since Wednesday.

They are mid-70s with (pre treatment) CLL blood cancer. and have had three doses and booster.

They are trying to get antivirals today but not succeeding! They got through to 111 and were told that a Dr would phone them, but this was 4 hours ago. Also local GPs are closed.

How can they speed this up? Would the local hospital be able to help?

OP posts:
Raindancer411 · 11/06/2022 19:35

I would chase up 111

over50andfab · 11/06/2022 19:38

I had this and it was more than a 4 hr wait but they did call to assess symptoms and what if any treatment might be needed. Also if another phone call is needed with a specialist to check any interactions with medication already taken.

Original poster
TurmericFan · 11/06/2022 19:47

Thanks for your replies!

I've realised she's said it was "hours ago" that she got through to 111 so not sure how long ago it was exactly.

So there's no chance of having been forgotten etc., it's likely just Saturday delays?

OP posts:
79Fleur · 02/07/2022 15:14

My CEV partner is currently flattened with covid and his oxygen sats are currently at 92 - literal hours of waiting and various calls back from 111 Drs and he has just been told he doesn’t qualify for antiviral treatment. Good luck ..but seemingly just because you are on the CEV list and have the swab kit / letters telling you that you will get antivirals it doesn’t mean you will receive the treatment you have been told you will get.
His specialist is pushing for them but the 111 Drs disagree…. His specialist said if his sats drop below 90 then to call 999.
Frankly it’s a shit show.

YourLittleSecret · 02/07/2022 15:31

79Fleur It's true they don't seem to give antivirals to all those who got the letter and test kit.
If you are worried take him to A&E.
I was pretty ill with covid last year , immunosuppressed. I ended up in hospital when SATs went below 92 but when we called an ambulance they told me to get a lift as it would be quicker. I still spent 12 hours on a trolley waiting for a bed and this was last summer when covid levels were very low.

IbizaToTheNorfolkBroads · 02/07/2022 15:34

DM is 79 and having treatment for a lymphoma. She’s been told to go to A&E at the hospital where age has her chemo if she tests positive. Her notes are flagged that she needs antivirals ASAP.

Can your family member get to A&E @TurmericFan ?

Sitdownifyoulike · 02/07/2022 15:36

This reply has been withdrawn

This has been withdrawn at OP's request.

TheMortalWombat · 02/07/2022 18:43

@79Fleur are you in England as it's not up to the 111 doctors - it's up to the doctors at the CMDU - call your local one and ask 119 for a referral to it.

You need to register a positive test online or via the 119 route and then you will be contacted within 24 hours, although at the moment they are saying it could be a lot longer.

The advice is not to attend A and E unless you deteriorate with red flag symptoms. The antivirals are sent to you by courier.

79Fleur · 02/07/2022 19:34

@TheMortalWombat thanks for the advice - yes we are in England, he has registered his test on the govt site I think but the issue is (after at least 4/5 calls from different medics)that they couldn’t decide if his rare lung / heart condition qualifies for the treatment it seems to be a bit of a postcode lottery as others on the forum he is on for his disease have had antivirals and others have been refused (although it could be more nuanced due to different meds etc.)
I will ask though if he called 119 although I suspect one of the call backs might have been from them.
Final consensus was they will not issue antivirals to him but to call 999 if he gets worse.
I just find it bonkers that they wrote to him and sent him the testing kits telling him don’t worry about being CEV because we will give you this treatment to keep you out of hospital and then when it happens they say well actually we won’t now …🤷‍♀️It’s infuriating.

nether · 02/07/2022 19:41

Contact their haematologist.

With a leukaemia on watchful wait, they really should be assessed for the advanced treatments. And his haem unit can refer him to CMDU (and IME it's a faster and better route than the central system or GP)

I'll see if I can find the list of qualifying conditions -it's not all the CEV

TheMortalWombat · 02/07/2022 19:44

Look up the CMDU for your area and just call them directly (there's usually also an email address) - they are the people who arrange the prescribing of the medication and who he shoudl have been referred to make the decision; they are separate from 111/119.

And agree with the above - it's not all about the conditions but about the medications people are currently taking too.

Open 8 -6 in most areas including Sundays.

Justwingingit2005 · 02/07/2022 19:50

My dad is cev has letter telling him to ring once positive. We were told just because u get the letter it doesn't mean u will get antivirals. You need to have certain symptoms and we were told some get the placebo. Who knows what he got but he had 2 rough weeks.

tobee · 02/07/2022 22:36

Really the question is where's the fucking Evusheld Boris Johnson?!!!

TheMortalWombat · 03/07/2022 07:04

@Justwingingit2005 if you are eligble for antivirals you get antivirals - you do not get a placebo. There is a trial go on for another group of people who are not eligible who may be given a placebo but this is completely different. People who are told they will be given antivirals are not given a placebo; people on the clinical trial may be.

@tobee it's for those who are not able to have the vaccine- rightly so - everyone should be encouraged to get vaccinated rather than rely on PrEP as this is safest.

Original poster
TurmericFan · 03/07/2022 10:40

Thanks for the further posts! It was my Mum and she got Paxlovid sent over by courier from the local hospital on the Sunday evening, having had symptoms from the Wednesday and testing positive from the Friday. Yes it was the CMDU who arranged it, whereas nothing came out of her calls to 111.

And yes I recognise the phrase 'Watchful wait', that's what she's on with her CLL because although years after diagnosis she's still presymptomatic.

She was ill in bed for a couple of days until the Paxlovid kicked in, but is back to normal now and out-and-about as she was before. And she has just been offered a fifth jab.....

OP posts:
nether · 03/07/2022 13:31

it's for those who are not able to have the vaccine- rightly so - everyone should be encouraged to get vaccinated rather than rely on PrEP as this is safest

It's also for those who have a ropey or non-existent response to the vaccine

There are about 500,000 people in that category, and they still have to shield - so it's like asking the population of places like Edinburgh, Leicester or Cardiff to stay home. All for the want of a drug that has been approved for use in the UK, and is in use in many other countries.

There should be fucking outcry about this - look how hard everyone found staying at home, but the government is choosing to let this group remain that way.

#forgottenshielders

tobee · 03/07/2022 13:53

TheMortalWombat · 03/07/2022 07:04

@Justwingingit2005 if you are eligble for antivirals you get antivirals - you do not get a placebo. There is a trial go on for another group of people who are not eligible who may be given a placebo but this is completely different. People who are told they will be given antivirals are not given a placebo; people on the clinical trial may be.

@tobee it's for those who are not able to have the vaccine- rightly so - everyone should be encouraged to get vaccinated rather than rely on PrEP as this is safest.

This is not true. It is for those who cannot make antibodies to the vaccine - some after 5 doses. Usually because they are immunosuppressed.

The vaccines stimulate the body to produce antibodies. Evusheld cleverly gives people antibodies who's body has not done that. Evusheld is made by AstraZeneca, a British Swedish company, and is used in at least 30 other countries right now. But not here. For no good reason. And it's barely discussed anywhere by politicians, the media and the like.

tobee · 03/07/2022 13:54

TurmericFan · 03/07/2022 10:40

Thanks for the further posts! It was my Mum and she got Paxlovid sent over by courier from the local hospital on the Sunday evening, having had symptoms from the Wednesday and testing positive from the Friday. Yes it was the CMDU who arranged it, whereas nothing came out of her calls to 111.

And yes I recognise the phrase 'Watchful wait', that's what she's on with her CLL because although years after diagnosis she's still presymptomatic.

She was ill in bed for a couple of days until the Paxlovid kicked in, but is back to normal now and out-and-about as she was before. And she has just been offered a fifth jab.....

Please to hear the update op!

tobee · 03/07/2022 13:56

Unfortunately, Paxlovid is contraindicated for many people who are clinically extremely vulnerable. The other treatments available have less good responses.

79Fleur · 04/07/2022 14:38

Just popped on again to thank @TheMortalWombat again for the advice you were spot on and the CMDU have arranged a courier to bring some anti virals for my partner today.
Despite what 111 Drs said he was absolutely eligible for them and they were dispensed with no issues at all given his medical history.

TheMortalWombat · 06/07/2022 07:52

Great news Fleur! It took me 48 hours of them but then I started to feel much, much better so I hope they work quickly for him too.

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