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Clinically Vulnerable Families 💙💜💗 Profile picture
@cv_cev
Apr 12, 2022 • 18 tweets • 8 min read • Read on X
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🚨Living with Covid #Access2Antivirals 🚨

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.

🧵will 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/do…

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-coronavi…

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/
⏳️Your 5 day timer starts from your symptom start date⏳️

4. Report your result online.
(must be an NHS ordered test kit)
gov.uk/report-covid19…

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/do…
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/do… Please use the link.
⚠️ BEWARE of WEEKENDS ⚠️

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/h…

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

Clinically Vulnerable Families 💙💜💗 Profile picture
Dec 8
🥳 This is a HUGE win for CVF!

- Safe access to public buildings is a right!

As a consequence of our advocacy, national voting guidance has been updated to:
✅ Improve ventilation
✅ Add air filters
✅ “See a mask, wear a mask”

* VERY IMPORTANT THREAD *
PLEASE SHARE!
1/ Support for clinically vulnerable electors - alongside increasing ventilation of the room either through opening windows or doors or using HEPA filters where windows or doors cannot be kept open, you can ensure face masks are provided for polling station staff to use (using see a mask, wear a mask as a basis) and promote the use of social distancing when interacting with clinically vulnerable voters. Your staff training should cover how you can offer to conduct photographic ID checks for mask wearers, including whether checks could be conducted outside for these voters if photographic ID is...
6 years since Covid emerged, we are finally making important changes... thanks to your help!

The new guidance not only recognises our needs - due to heightened health risks - but also the risks posed by mask removal.

2/ polling station staff not having awareness of health risks when asking a clinically vulnerable voter to remove a face mask in order to check photographic ID The Electoral Commission
Why is this so important?

- It is the first national guidance to address our issues directly.... and it sets an important precedent that we plan to build on!

3/ Read more:
clinicallyvulnerable.org/post/how-clini…
Read 7 tweets
Clinically Vulnerable Families 💙💜💗 Profile picture
Dec 3
A letter just landed on Baroness Hallett’s desk from CATA (Covid Airborne Transmission Alliance).

If you are a patient, an NHS worker, or Clinically Vulnerable... or you want to see safety measures updated - you need to see this!

1/
The Covid Inquiry is there to help us to learn lessons and change how we plan for pandemics.

But, NHS England quietly published a strategy (July '24) that says:

it will not be possible to halt the spread of a new pandemic virus, and it would be a waste... to attempt to do so
2/ See Appendix 5 https://www.england.nhs.uk/long-read/framework-for-managing-the-response-to-pandemic-diseases/#appendix-5-planning-assumptions
That clashes with Hallett’s recommendation:

"risk assessment that moves away... reasonable worst-case scenarios towards... a wider range of scenarios"

But their plan assumes mass infection is inevitable and acceptable.

For some, it isn’t survivable!
3/
Read 11 tweets
Clinically Vulnerable Families 💙💜💗 Profile picture
Nov 8
🧵 This autumn the UKHSA is rightly worried, as 'flu is a real risk...

TLDR:
Clinically Vulnerable people ALL need 'flu vaccines + antivirals this year (if symptomatic or exposed) + confused infection control guidance.

If you are Clinically Vulnerable, please read on...

1/ Graph showing the early rise of flu in the UK.
This year's strains aren't looking good:

The infections have started earlier.
A(H3N2) strains are dominant - and linked to worse outcomes.
A shifted strain (slightly different to vaccines) is also doing the rounds.

2/ Summary: Influenza is now circulating in the community with earlier than usual onset of activity in the 2025 to 2026 season, and with an A(H3N2) drifted strain (K, also known as J.2.4.1) predominating A(H3N2) predominance is associated with higher morbidity and mortality, particularly in the elderly, than when A(H1N1) predominates All eligible groups should be encouraged to get vaccinated with the 2025 to 2026 seasonal influenza vaccine as soon as possible Prompt antiviral post exposure prophylaxis and treatment for seasonal influenza should be offered to eligible groups Antivirals gui...
If you have been invited for a vaccine, or live with a Clinically Vulnerable person (but don't qualify) please consider getting a vaccine - they can be as cheap as £9.95.

Everyone benefits from 'flu vaccines and children (up to 16) are offered them for free in school.

3/ Image of a banner outside a shop. A pharmacist is on the picture. She is has black straight hair, brown eyes, a big smile and is wearing a cream suit jacket with a staff badge. Superdrug *REMINDER!!! IT'S FLU VACCINATION SEASON Flu Jab Service provided by our healthcare professionals Noyne Pharmacist MEMBER PRICE £9.95 NORMAL PRICE £19.95 MEMBERS SAVE MORE Service available here Help protect yourself against several strains of the flu this season with one simple visit in-store. وو
Read 10 tweets
Clinically Vulnerable Families 💙💜💗 Profile picture
Oct 23
CVF💙💜💗's Closing Statement

⚠️SAFE
- Schools must be made safe.

👩‍🏫SUPPORT
- Children must be given appropriate support to continue their education at home.

🛡️STATUS
- Clinical Vulnerability must be recognised as a distinct group in the Equality Act.

1/ @AdamWagner1 KC
⚠️SAFETY
"There is good evidence that many schools can be made safer for Clinically Vulnerable children and those in Clinically Vulnerable families."

Ventilation is uncontroversial!

2/
Ventilation works!

"There is sufficient evidence and consensus now for the Inquiry to recommend that clear air is prioritised in schools"

3/
Read 7 tweets
Clinically Vulnerable Families 💙💜💗 Profile picture
Oct 21
🚨Boris Johnson - Children & Young People

Message to Gavin : 6/7/20
GW "need to push on the push compulsary attendance, and the message of normality"

AW "[You] encouraged him to continue the job.

Would you agree this was months before the vaccine...?"
BJ "Yes"
1/ @AdamWagner1
AW "Do you think in that race to return to normality [summer 2020] Clinically Vulnerable families may have been left behind?"

BJ "Getting back to school... would have been the best for all C&YP, CV or not."

2/
Johnson knew it would endanger our lives!!!

AW "It was sometimes not safe"

BJ "There was always going to be an argument... from that position... you were going to create a situation in which Vulnerable parents would be exposed to the virus picked up by kids in schools."

3/
Read 14 tweets
Clinically Vulnerable Families 💙💜💗 Profile picture
Oct 20
🚨Whitty is on the stand today... follow this thread.

CTI "What about children who lived with parents who were still at risk...?"

Whitty "The risk to shielding adult... will be increased somewhat, but the risk to the child... scarring their life chances indefinitely."

1/
CW "Risk-benefit taking a child-centred approach, was to prioritise the needs of the children.

I don't think [there is] convincing evidence, that was with the benefits of hindsight, an incorrect judgement."

- Don't the needs of the children include not killing their parents?
2/
CTI "But looking at if from the perspective of a child who might be a very difficult position... to be in."

CW "The need to have a conversation with the doctor [or nurse] their family know."
___

How would these conversation reduce risks?
Wouldn't it waste the time of HCWs?
3/
Read 23 tweets

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