Clinically Vulnerable Families ๐Ÿ’™๐Ÿ’œ๐Ÿ’— Profile picture
Apr 12, 2022 โ€ข 18 tweets โ€ข 8 min read โ€ข Read on X
๐ŸšจLiving with Covid #Access2Antivirals ๐Ÿšจ

Antiviral treatments are available to the 'Severely Immunosuppressed' a subset of the Clinically Vulnerable who remain at high-risk despite up to 5 vaccine doses.

๐Ÿงตwill cover how Vulnerable groups can access antiviral treatments.
1/ #Access2Antivirals  We often cannot access essential antivir
Early antiviral treatment is a vital tool to prevent severe outcomes in high-risk people.

Currently only a small group who have poor immunity following vaccination are allowed to access them.

Please look through this list to see if you qualify:

england.nhs.uk/coronavirus/doโ€ฆ

2/ Please follow the link in Tweet   * too many words
The 'Severely Immunosuppressed' group is smaller than those offered 5 vaccine doses & includes some never flagged as CEV.

So...
1) What should you do if you have Covid and DO qualify for antivirals?

2) What if you are Clinically Vulnerable/50+ and DON'T qualify on the list?

3/
What should you do if you have Covid and DO qualify for antivirals?

1. Make sure you have lateral flows at home. If you qualify for antivirals you can still order lateral flows for your own use.

gov.uk/order-coronaviโ€ฆ

4/ Check if you are eligible to order rapid lateral flow tests
2. If you, or a member of your household, have Covid symptoms you* should test.

*Keep testing for a few days, especially if at all symptomatic. Try to Isolate / HEPA / ventilation & FFP3.

3. Even a pale positive on lateral flow is still a positive.



5/
โณ๏ธYour 5 day timer starts from your symptom start dateโณ๏ธ

4. Report your result online.
(must be an NHS ordered test kit)
gov.uk/report-covid19โ€ฆ

In theory, this should be enough to trigger a referral.

Our experience shows you should also contact your GP or 111 / 119.

6/ GOV.UK  Report a COVID-19 test result  When was the test tak
Ask to be referred you to your local Covid Medicines Delivery Unit (CMDU) for triage. (They should not refer you to each other.)

5. The CMDU should contact you within 48hrs.

If they do not, or you are on day 5, you need to follow it up.

Do not give up!

7/ NHS   Covid Medicines Delivery Unit (CMDU)
6. If during triage you are told that your symptoms are too 'mild' refer them to the guidance.

8/

england.nhs.uk/coronavirus/doโ€ฆ
7. If you are told they only consider patients until day 6 or 7 refer them to this pathway.

By day 6/7 you would be limited to Remdesivir or 'off-label' (where a medicine used in a way different to that in the licence) access to the other treatments.

9/
england.nhs.uk/coronavirus/doโ€ฆ Please use the link.
โš ๏ธ BEWARE of WEEKENDS โš ๏ธ

Weekend access is generally poor. It appears to be a postcode lottery.

We are worried about the availability of services over the upcoming 4 day Bank Holiday weekend.

Some areas will offer treatment on day 6/7, but this is far from optimal.

10/
8. If you are refused treatment and you do qualify you need to take it further try escalating within the hospital via your specialist team / PALS but be prepared to take it all the way to your local MP if all else fails by day 5.

nhs.uk/nhs-services/hโ€ฆ

11/
We have heard that 10-15% of people who DO qualify can access these antiviral treatments.

Put another way, it means 85-90% can't access the antivirals.

We are highly concerned about this number!

12/
What if you are Clinically Vulnerable/50+ and DON'T qualify on the list?

The only possibility is accessing treatments via the Panoramic trial.

Lots of people can qualify for the trial but only 450 participants are added daily, of which only 225 are given the treatments.

13/ Who is eligible to join PANORAMIC:  You are currently experi
The demand has been high, due to the current surge.

However, this is currently closed for Easter...

It also appears to close over the weekends.

14/ Thank you for your interest in the PANORAMIC Trial, we are n
The Panoramic trial has a screening process and either your GP, or a study nurse or doctor will assess your eligibility and ask for your consent.

If you do qualify you will have a 50:50 chance of being offered antivirals, which should arrive the next day.

15/ Chronic Respiratory disease (including chronic obstructive p
Even if you don't receive the antivirals you will need answer questions online for 28 days and answer 3 phone calls to discuss with the trial team on days 7, 14 & 28.

16/ Taking part in the study will involve answering a few questi
We believe this constitutes health rationing.

Those 75+ should have been added to the antivirals list.

Plus, since treatments are already proven safe and effective for all Clinically Vulnerable / 50+, they should all have #Access2Antivirals through GPs and emergency GPs.

/END Sajid Javid   MHRAgovuk has just approved #Paxlovid, the cut
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More from @cv_cev

Nov 16
Who will get a Covid booster in 2025? Far fewer than before...

The JCVI decision means that Clinically Vulnerable people u70 and who aren't immunosuppressed lose access.

โ€œCost-effectivenessโ€ prioritised over protection.

NEW CONCERNING STUDY ๐Ÿ‘‡

1/๐Ÿงต Adult eligibility  Adult eligibility should be based on the willingness-to-pay approach that is subject to procurement and delivery at a cost-effective price. The advice for universal vaccination from age 75 years is an example. JCVI has no role in the procurement or delivery of COVID-19 vaccines or any other vaccine.
Until now, Covid vaccine policy prioritised protecting 'at risk' groups.

Their approach focuses on โ€œcost-effectiveness,โ€ raising age thresholds. Not providing vaccine protection to younger Clinically Vulnerable. Itโ€™s a deeply worrying change.

This data may have been used.
2/ Fig. 3: Using data from the spring and autumn 2023 boosters and the 2023/24 winter wave of COVID-19, vaccine threshold prices stratified by age-group, risk-group and modelling approach.  We calculate the vaccine threshold price for the two time periods (top row: winter 2023/24; bottom row: spring 2023), 16 age groups (y-axis), three risk groups (panels) and five methodologies (red, dark-blue, light-blue, grey and black). Dots show the most likely value assuming ยฃ20,000 per QALY; when assuming ยฃ30,000 per QALY the extended bar-and-whisker plots show the 95%, 80% and 50% credible intervals co...
Younger Clinically Vulnerable people e.g. those with chronic heart failure, COPD, or diabetes could be excluded.

The study admits data for our group is limited, meaning the most at-risk could fall through the cracks.

*It is unclear if the study was used in decision-making.*

3/ Image
Read 17 tweets
Nov 10
๐ŸšจCOVID INQUIRY ROUND UP (Wk 7)

Rosemary Gallagher MBE (Professional Lead for Infection Prevention and Control at the Royal College of Nursing) supported non-IP specialists e.g. aerosols experts "shaping guidance".

1/
"If Covid-19 was, in fact, airborne [.] it had implications for infection prevention and control guidance [.]"

"What was the NHS estate going to do to make it safe?"

"Improving the ventilation or looking at other technologies [.]."
2/
Next, possibly the best quote from Baroness Hallett this week:

3/
Read 10 tweets
Nov 6
Questioning Jenny Harries is "like pinning jelly to a wall", according to one CVF๐Ÿ’™๐Ÿ’œ๐Ÿ’— member!

Thanks @AdamWagner1 for trying!
๐Ÿงฑ๐Ÿฎ๐Ÿ”จ

"People should be enabled to wear what they wish, as long as it's safe."
"FRSMs recommended because of issues of handling and fit-testing."
1/
Would you agree that FFP3 masks, if fit-tested, mean that the Clinically Vulnerable patient *is* safer, they don't just "feel safer"[.]?

๐Ÿ”จ 'Hierarchy of controls'
๐Ÿฎ Don't want to tell people - no harm
๐Ÿงฑ Difference feeling safe and effective PPE. Equally support FRSM

2/
"The evidence of effectiveness between FFP3s and FRSMs in clinical use is very, very small."

3/
Read 6 tweets
Oct 29
โ™ป๏ธ RETWEET if you think that Clinically Vulnerable people (those at the most risk from Covid) were economically impacted by the pandemic. โ™ป๏ธ

The @covidinquiryuk rejected us for this module, leaving us with * NO VOICE * !!!!

1/ Image
Image
Clinically Vulnerable (CV) people and their families faced, and in many cases continue to face, enormous economic strain.

For many, shielding was the only safe option, but it came with serious costsโ€”lost jobs, reduced hours, and in many cases, the inability to work at all.

2/ 82%  of Clinically Vulnerable households lost work or retired early due to high Covid risks  [Poll of 364 Clinically Vulnerable people March 2024]  Clinically Vulnerable Families
Without protections, CV people and their families couldnโ€™t simply return to โ€œbusiness as usualโ€ as measures lifted.

Many continued shielding, at their own expense, as they were unable to risk exposure. For some, this meant months / even years out of the workforce.

3/ #CVVoices
Read 9 tweets
Oct 8
๐Ÿ’ฅClinically Vulnerable Families ๐Ÿ’ฅ

Quite a moment as Dr Catherine Finnis take the stand as volunteer deputy leader of CVF.

1/ FOLLOW THIS THREAD Dr Catherine Finnis swears in
A brief introduction to CVF

We were founded due to the risks in schools, but the inquiry is focused on the risks in healthcare in this module.

2/
One of the benefits of the shielding programme:

"was that you had a passport through that shielding letter to enable you to work from home."

3/
Read 34 tweets
Oct 6
๐ŸšจCOVID INQUIRY ROUND UP (Wk 4)
Due to sickness, this week of evidence ended early.

CMO ๐Ÿด๓ ง๓ ข๓ ท๓ ฌ๓ ณ๓ ฟ
Impact witnesses:
Ambulance, GPs, Intensive Care
Former medical director of WHSCT
National Ambulance Adviser NHS England
Intensive Care Experts and witnesses

1/
๐Ÿด๓ ง๓ ข๓ ท๓ ฌ๓ ณ๓ ฟ The Welsh CMO, Sir Frank Atherton, spoke about "broadly accepting" advice from the now highly contentious 'IPC cell' led by Dr Lisa Ritchie.

2/
The term "precautionary principle" has now been redefined within the inquiry multiple times to suit different people's purposes.

This is CMO ๐Ÿด๓ ง๓ ข๓ ท๓ ฌ๓ ณ๓ ฟ's interpretation.

3/
Read 11 tweets

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