Access to treatment and priority PCRs again

[Sumoldbloke]

Response from Leukaemia Care Advocacy.

"Thank you for bringing that to my attention, I wasn’t aware this was happening that the CMDU were turning people away due to severity of symptoms. In my understanding, severity of symptoms was never an eligibility criteria for receiving treatment – in fact treatment should be given as soon as possible as a preventative measure for symptoms getting worse. I’ve flagged this issue with the NHS in my correspondence to them, so thank you again for making me aware.

I completely agree with you that a solution is needed. We have asked the NHS if they will:

Either confirm in a communications piece that the standard PCR test kits that patients have ordered from 119 will generate results in the same timeframe as those who received the priority PCR kit. Or consider sending priority PCR kits to those who were missed, or allow patients to order their own priority PCR kits

consider self-referral for patients directly to the CMDU, to cut out the middleman of GP/111 and save crucial time

Clarify whether or not eligibility for the treatments is also based on the severity of COVID-19 symptoms experienced by a patient.

This issue is now also getting national level media attention (BBC, ITV news, I newspaper etc.), and we have commented and shared what we can to support these pieces of journalism and raise awareness of the issue, hopefully adding further pressure on the NHS to resolve this."

bbc.co.uk/news/uk-60161763?...

[CguLLer]

BBC reporting now bbc.co.uk/news/uk-60161763

[RosettaClapp]

Its a scandal we have been excluded from the NHSE database ! Im so pleased to see in todays Times that there is a chance that we might be included by 10th Feb but I'm not holding my breath sadly ..that was a good reply you got though at least someone has grasped the nub of the problem at last I rang them and they said much the same..PROGRESS maybe ??

[Sumoldbloke in reply to RosettaClapp]

It does seem that there is beginning to be some recognition of the problem. I think we keep pressuring GPs, consultants , MPs , media and so on until they sort this out.

[RosettaClapp in reply to Sumoldbloke]

I dont think there is any other way ..but we really should not have to fight so

[Sumoldbloke in reply to RosettaClapp]

Can you post the piece from the Times? I think it is behind a paywall

[RosettaClapp in reply to Sumoldbloke]

Ill try it probably isbehind a pay wall but we pay

its antivirals not antibodies sadly but here goes

A new Covid antiviral pill could save thousands of lives when it is made available through the NHS next month, the health secretary said yesterday.

The drug, called Paxlovid, will be rolled out to high-risk patients — including people who are immunocompromised, cancer patients and those with Down’s Syndrome — from February 10, if they test positive for coronavirus.

Trials have indicated that the pill can cut the risk of hospitalisation and death by about 88 per cent if given within five days of symptoms appearing.

Sajid Javid said: “Our pharmaceutical defences are crucial as we learn to live with Covid-19 and the UK is leading the way, especially when it comes to the use of cutting-edge antivirals.

“This is an important milestone — especially as Paxlovid has been shown in clinical trials to reduce the risk of hospitalisation or death for vulnerable patients by 88 per cent, meaning potentially thousands of lives could be saved.”

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According to the Department of Health and Social Care, the UK has procured more antivirals per head than any other country in Europe, with nearly five million courses ordered.

Another antiviral, molnupiravir, has already been rolled out to high-risk patients through a study run by the University of Oxford.

But Paxlovid, made by Pfizer, is seen as the more exciting of the two treatments. A full course involves three pills taken twice daily for five days — ideally very soon after a person is infected. Two of the pills are an antiviral called PF-07321332, which is designed to block the activity of an enzyme that the coronavirus needs to replicate.

The third pill is an existing drug used in HIV treatment called ritonavir. kThis prevents PF-07321332 from being broken down too quickly in the body, allowing it to remain active for longer.

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Pfizer said last month that recent laboratory testing showed that it appeared to work as well against the Omicron variant as it did against “any Sars-Cov-2 variant of concern.” The government has ordered 2.75 million courses of Paxlovid and 2.23 million courses of molnupiravir.

[Sumoldbloke in reply to RosettaClapp]

Just got a priority test kit in the post . I do hope everyone is now included.

[HappyCatUK in reply to Sumoldbloke]

Yes, mine also arrived in the post today.

I did have Covid a month ago, but at least I now have a priority test if I have the misfortune to get infected again 😬

[bennevisplace]

Thanks to ChristyAnne_UK and HAIRBEAR_UK for speaking up on our behalf in the BBC article.

[Susanbarratt]

My husband had a telephone consultation with his GP two weeks ago who said he would look into my husband's situation, nothing forthcoming. Hospital useless. I was assured by Blood Cancer UK even though he is doing extremely well on WW he is eligible. It's as if he doesn't exist.

[hopefulbunny]

Just to let you know that I have received in the post today, a priority PCR test (without requesting one!). Just wondering if another batch has been sent out from NHS following all the publicity. So grateful to all who have fought for this oversight to be put right, thank you. It's such a relief to know I have one of these tests now in the cupboard as a safeguard. I live in Worcestershire. Best wishes to all. X

[Sumoldbloke]

Good news and I have just received one as well. It seems all the lobbying has paid off .I do hope everyone who needs one gets one. I am a happy bunny today!

[BluMts]

I've received a Priority PCR today. Please post whenever you learn if this means we are on THE LIST and can expect an automatic call for treatment if our test is positive.

Thanks to the Charities and individuals who made this happen.

[Sumoldbloke in reply to BluMts]

I think, but don’t know, that this means we should be contacted if testing positive on the priority PCR. The booklet with the test I received today gives an indication of that on page 15. Section 9. It also says to call 111 if not contacted within 24 hours.

[RosettaClapp in reply to Sumoldbloke]

so there is a possibility that the message wont get through to CMDU ?? I intend to contact the emergency cancer line as recommended my SCN if I get a +ve result all the same

[Sumoldbloke in reply to RosettaClapp]

Good idea and I will do likewise . It could save valuable hours and after this shambolic rollout since 18 December I have little confidence that it will all run smoothly without our own vigilance.

[Annie1920 in reply to Sumoldbloke]

Exactly my sentiments.. Or are we cynical? 😏

[BluMts in reply to Sumoldbloke]

Thanks Sumoldbloke, I opened envelope with gloves and left kit to explore tomorrow. Yes, now seen the booklet. I have lost so much faith in the process over past weeks of contacting NHS, 11, 119 and GP, that I now wonder still.... was the booklet there in kits anyway and if I'm not on the list will they contact me if positive? Sorta feel I'm being too lacking in trust, but that's what's happened. Really hope my trust is re-built by future events. Its not comforting to be negative.

[Sumoldbloke in reply to BluMts]

I hope you will never have cause to use the test.