Clinically Vulnerable Families πŸ’™πŸ’œπŸ’— Profile picture
Jan 17 β€’ 21 tweets β€’ 6 min read β€’ Read on X
πŸ’₯Clinically Vulnerable Families πŸ’₯

Yesterday, @lara_wong, took the stand as founder and leader of CVF.
**Sorry for the delay!**

- New risks posed by Covid-19
- We need to be recognised as an equality group.

1/ FOLLOW THIS THREAD
Clinically Vulnerable people were, and are still, being let down.

2/
The lack of infection prevention and control in vaccination centres for an airborne virus was very concerning.

3/
People who had multiple conditions or rare diseases were not in clearly defined groups and had to fight for their own eligibility.

4/
Good examples of vaccination centres:

πŸ’™ Drive through
πŸ’œ Tented (very well ventilated)

5/
People were never informed on how to reduce their risks using better, close fitting masks such as FFP3 or FFP2s.

Some people were asked to remove better masks.
6/
Third Primary doses.

These were hugely problematic, because people were often aware that they were eligible. They also had to prove that they did qualify and they were not told how to do this.

7/
Problems with the recording of doses in the NHS computer system.

8/
Therapeutics (antivirals)

Hugo Keith KC, asked about issues with the range of antivirals available.

9/
There was a need for different antiviral treatments.

10/
The importance of Evusheld and the impact on the severely immunosuppressed.

The consequence of not protecting them was phenomenal:

πŸ’” Mental health
πŸ’” Social connections
πŸ’” Ability to re-engage with the rest of the world

11/
The lack of the UK government's action left severely immunosuppressed people essentially locked up without any route out.

12/
People who are severely immunosuppressed have a greater reliance on antiviral treatments.

13/
Severely immunosuppressed people are invited twice a year in order to improve their immune response, and the vaccines are beneficial for the majority.

14/
Hugo Keith KC lays out concern around antiviral clinical trials.

15/
Concerns that some people were invited on clinical trials with a 50% chance of treatment when they already had been given emergency approvals.

16/
The importance of children's vaccines to Clinically Vulnerable families.

17/
It was incredibly difficult for children in Clinically Vulnerable families who were left waiting for their vaccines because they were not priortised.

18/
Misinformation / disinformation

The wider community - there is a clear knock on from people not taking up their vaccines if it is undermined.

Clinically Vulnerable people are not immune to these messages.

19/
CVF do appreciate how accessible the Covid Inquiry venue is and the efforts of inquiry staff to impleme measures to reduce the risks for Clinically Vulnerable people who attend.

20/
If you can, please do support our work.

Many thanks! πŸ’•

21/
crowdfunder.co.uk/p/clinically-v…

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More from @cv_cev

Dec 28, 2024
πŸ’Š Important 🧡 - 'flu antivirals πŸ’Š

Here’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:
πŸ’™πŸ’œπŸ’— High-risk groups (see list below)
πŸ₯ 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 β‰₯40)
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
🚨Clinically 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/
πŸ›‘Shielding

CEV people are a diverse group with varied personal circumstances.

It provided a passport:
🏠 Right to work from home
πŸ’· SSP entitlement
🚚 Food & medicine deliveries
πŸ’‰ Priority vaccine access

3/
Read 28 tweets
Nov 27, 2024
🚨 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
🚨 @cymru_inquiry Covid Bereaved🏴󠁧󠁒󠁷󠁬󠁳󠁿
Anne-Louise Marsh-Rees, Co-Leader.
Great witness!

🩺Symptoms were unclear
πŸ›‘Shielding comm confusing
⛔️Protect the NHS

Please do look at this whole 🧡
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.

β€œCost-effectiveness” prioritised over protection.

NEW CONCERNING STUDY πŸ‘‡

1/🧡 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 β€œcost-effectiveness,” raising age thresholds. Not providing vaccine protection to younger Clinically Vulnerable. It’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 Β£20,000 per QALY; when assuming Β£30,000 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
🚨COVID 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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