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

Dec 28, 2024
๐Ÿ’Š Important ๐Ÿงต - 'flu antivirals ๐Ÿ’Š

Hereโ€™s a quick thread on what you need to know about accessing antivirals for treatment and prevention in the UK.

1/ Image
When are antivirals recommended?

Antivirals are advised for:
๐Ÿ’™๐Ÿ’œ๐Ÿ’— High-risk groups (see list below)
๐Ÿฅ People with severe symptoms or those hospitalised.

Early action is vital!

2/ Risk factors for complicated influenza  These include:  neurological, hepatic, renal, pulmonary and chronic cardiac disease  diabetes mellitus  severe immunosuppression  age over 65 years  pregnancy (including up to 2 weeks post-partum)  children under 6 months of age  morbid obesity (BMI โ‰ฅ40)
The 'severe immunosuppression' group is different again, but this list is "not comprehensive".

If you think you may qualify as Clinically Vulnerable to 'flu, it is always worth asking.

3/ 5. Severe immunosuppression  Examples of severe immunosuppression relevant to this guidance are given below. Degrees of immunosuppression are difficult to quantify and individual variation exists, therefore this list is not comprehensive. Examples of severe immunosuppression include:  severe primary immunodeficiency  current or recent (within 6 months) chemotherapy or radiotherapy for malignancy.  solid organ transplant recipients on immunosuppressive therapy  bone marrow transplant recipients currently receiving immunosuppressive treatment, or within 12 months of receiving immunosuppressio...
Read 8 tweets
Nov 27, 2024
๐ŸšจClinically Vulnerable Families - closing
** Shared in full**

Thanks to the @covidinquiryuk staff & team

"The vast majority of people who died [.] were Clinically Vulnerable [.] including people who caught Covid-19 in hospitals, which were supposed to be places of safety."

1/
"Most urgently, we need to make healthcare safe for Clinically Vulnerable people."

"And by making it safe for them - by improving ventilation and putting in place other protective measures - we make it safe for others too."

2/
๐Ÿ›กShielding

CEV people are a diverse group with varied personal circumstances.

It provided a passport:
๐Ÿ  Right to work from home
๐Ÿ’ท SSP entitlement
๐Ÿšš Food & medicine deliveries
๐Ÿ’‰ Priority vaccine access

3/
Read 28 tweets
Nov 27, 2024
๐Ÿšจ British Medical Association - closing

"aging estates meant that infection control measures could not always be fully implemented."
- Large open bays
- Inability to distance
- Lack of side rooms for isolating patients
- Lack of ventilation

1/
"The inquiry proceedings have laid bare the catastrophic consequences that are destined to be repeated without fundamental change."

2/
"healthcare workers were at higher risk of contracting Covid-19."

"The Health and Safety Executive [failed] to challenge adequacy of the IPC guidance, to act on concerns raised by [the BMA], and to ensure that employers compied with their health and safety responsibilities."

3/
Read 10 tweets
Nov 26, 2024
๐Ÿšจ @cymru_inquiry Covid Bereaved๐Ÿด๓ ง๓ ข๓ ท๓ ฌ๓ ณ๓ ฟ
Anne-Louise Marsh-Rees, Co-Leader.
Great witness!

๐ŸฉบSymptoms were unclear
๐Ÿ›กShielding comm confusing
โ›”๏ธProtect the NHS

Please do look at this whole ๐Ÿงต
1/
No communication with the people who were affected. They have had to work hard to lobby for changes.

2/
IPC guidelines weren't questioned when there was outbreak after outbreak.

Traffic lighting of wards for Covid+ patients and non Covid+ not adhered to.

3/
Read 7 tweets
Nov 16, 2024
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, 2024
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

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