Friends mum entitled to Covid drugs but can’t get them

Notagoodtime · 2022-03-08T18:38:00+00:00

My friends mum tested positive yesterday. She extremely clinically vulnerable and was given a letter to say she could have drugs if she has tested positive. 111 tell her that they are all really busy but she should hear back within 24 hours. I thought she would get a response quicker than this. Any advice ?

SandysMam · 08/03/2022 18:39

Does she have a consultant for her specific condition? Might be worth contacting them or that department directly?

Severntrent · 08/03/2022 18:44

I think 24 hours is normal. But good idea to call her consultant because they might be able to directly refer her to a covid medicines delivery unit CDMU.

Iseeyoulookingatme · 08/03/2022 18:58

If she doesn't get a call back from 111 this evening she can call her gp or 119 in the morning and see if they can help.

mummymummymummummum · 08/03/2022 19:03

Has she been told to go through 111? I got a text message notifying me that they were in the post without needing to notify anybody. Got the text same day as positive results and the medication arrived next day.

nether · 08/03/2022 19:04

Did she send off her Red Box PCR? Or is she depending on someone matching via her NHS number?

Either way, she should follow the instructions in the notification letter. I'm pretty sure that 111 have no part in referrals to CMDUs at all. So calling 119 might be a better bet.

And don't worry too much about the timings - the advanced drugs need to be started in 5 days so there's a bit of time.

nether · 08/03/2022 19:13

I think GPs can also refer patients to a CMDU (GPs cannot prescribe these drugs themselves) which might be worth trying tomorrow, if no joy from 119 before that

Sherwil16 · 09/03/2022 20:32

After I tested positive using lft, I re tested using the pcr test that I had previously been sent as a person who is identified CEV. The result came back within 24 hrs with a text advising me that I would be contacted re the possibility of having the infusion of created antibodies ( new treatment for CEV). I received a phone call that afternoon, but as my symptoms were very mild, I was offered a call back the next day , on the understanding that if symptoms became more serious, I would be taken to the local hospital for the drug infusion. My symptoms didn't progress further, so I was discharged. The next day I received a new pcr test, so I now have one available for future infections. I have been impressed with the way CEV people have been contacted swiftlyand had access to the new treatment if needed.

nether · 09/03/2022 21:44

I think you've just answered one of my questions!

(Which was whether you get a replacement Red Box test when you've used your first one).

lostinlego · 09/03/2022 21:53

When my partner tested positive, he rang the GP straight away and they referred him, he got the infusion the next day even though his symptoms were very mild.

PastMyBestBeforeDate · 09/03/2022 21:56

I've wondered that too nether :)

Bagelsandbrie · 09/03/2022 22:00

Same sort of thing happened to me. The Gp contacted the unit to let them know I needed the specialist drugs. By the time they responded they’d missed the time frame for me having them to make a difference so they decided it wasn’t worth me having them….!

thing47 · 10/03/2022 13:11

@Sherwil16

After I tested positive using lft, I re tested using the pcr test that I had previously been sent as a person who is identified CEV. The result came back within 24 hrs with a text advising me that I would be contacted re the possibility of having the infusion of created antibodies ( new treatment for CEV). I received a phone call that afternoon, but as my symptoms were very mild, I was offered a call back the next day , on the understanding that if symptoms became more serious, I would be taken to the local hospital for the drug infusion. My symptoms didn't progress further, so I was discharged. The next day I received a new pcr test, so I now have one available for future infections. I have been impressed with the way CEV people have been contacted swiftlyand had access to the new treatment if needed.

Everything that @Sherwil16 says here was our experience too. It all seemed to happen automatically for DH – a very experienced doc called from a local hospital and talked him through the options, DH also decided against the anti-viral infusion as he was lucky to get a really mild dose so didn't feel the benefits outweighed the risks. Doc followed up the next day to check DH hadn't got worse, and DH also got sent another priority home PCR test the next day. Good to know this aspect of the system is working so well at least.

thing47 · 10/03/2022 13:12

@Bagelsandbrie what timeframe were you given as a matter of interest? DH's consultant said the original recommendation was to take anti-virals within 5 days of diagnosis, but now they have pushed that out to 7.

Would be good to know what other people are being told on this.

CaptainMyCaptain · 10/03/2022 13:16

My daughter is immuno suppressed/ I took a day or two to get her anti-virals. She had a phone appointment first to assess whether she needed the infusion or tablets. She got the tablets which helped a lot although she started feeling rough again (although testing Negative) when she stopped taking them for a few days. We were all really grateful that the system worked and she didn't end up in hospital although she had a rough couple of weeks.

CaptainMyCaptain · 10/03/2022 13:17

That should say it took a couple of days not I.

PineappleVision · 10/03/2022 13:24

@thing47
What did they say the risks of the anti-virals were?

thing47 · 10/03/2022 14:16

[quote PineappleVision]@thing47
What did they say the risks of the anti-virals were?[/quote]
They haven't been tested on patients with very severe kidney failure, only on patients with mild to moderate kidney disease. There is therefore a possibility that they would be too toxic to a patient in end-stage renal failure – not that they are I hasten to add, just that they don't know.

Obviously in a bad case of Covid it's worth taking the (small) risk, but when Covid is mild, the risk-benefit balance shifts slightly.

Bagelsandbrie · 10/03/2022 17:45

[quote thing47]@Bagelsandbrie what timeframe were you given as a matter of interest? DH's consultant said the original recommendation was to take anti-virals within 5 days of diagnosis, but now they have pushed that out to 7.

Would be good to know what other people are being told on this.[/quote]
I actually can’t quite remember now but I think it was faster than that - within 48 hours maybe.. this was January. My doctor was really annoyed as he made the referral to the specialist clinic straight away but by the time they processed the referral etc they said they’d missed the timeframe.

Sparklingbrook · 10/03/2022 17:52

Family member couldn't use the priority test as it was over NYE BH and there were no priority collections. They went to the drive through place, once the positive PCR came through we got onto 111 and they went to the hospital the next day for the infusion.

Might be worth a call to the GP (they weren't open when we were trying to sort this).

thing47 · 10/03/2022 18:07

My doctor was really annoyed as he made the referral to the specialist clinic straight away but by the time they processed the referral etc they said they’d missed the timeframe.

That's not great, is it, especially when your GP has been so efficient. Hope you recovered OK without them?

Bagelsandbrie · 10/03/2022 18:41

@thing47

My doctor was really annoyed as he made the referral to the specialist clinic straight away but by the time they processed the referral etc they said they’d missed the timeframe.

That's not great, is it, especially when your GP has been so efficient. Hope you recovered OK without them?

Thankfully I ended up with just a mild case - I have Addisons, lupus, pituitary issues, asthma - all sorts! I’m generally very disabled by my conditions (on highest rates of PIP indefinitely/ ongoing) but amazingly I had a few days of being a bit poorly and then recovered quickly. I am triple jabbed.

nether · 10/03/2022 18:56

[quote PineappleVision]@thing47
What did they say the risks of the anti-virals were?[/quote]
There's info in this, but you'd probably have to google each of the drugs for the full side effect profile.

www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2021/12/C1603-interim-ccp-antivirals-or-neutralising-monoclonal-antibodies-non-hospitalised-patients-with-covid19-v5.pdf

There are some medications which exclude the use of the newer dripugs (Appendix 2 - sone are a blanket 'do not use' and others which need individual consideration.

It looks as if impact liver and kidney function are the major concerns, plus a range of hypersensitivity reactions. Also effect on foetus is unknown so caution if patient is or could be pregnant. And at least one of them interferes with effectiveness of hormonal contraception.