Clinically Vulnerable Families πŸ’™πŸ’œπŸ’— Profile picture
Jan 31 β€’ 26 tweets β€’ 9 min read β€’ Read on X
🚨Clinically Vulnerable Families πŸ’™πŸ’œπŸ’—

Our oral closing statement highlights 5 key concerns - however, further details will be explored in depth in our later written submissions.

1: Therapeutics programme - wasn't good enough!

1/
The immunosuppressed were left behind.

2/
What could we have done better?

Dame Kate Bingham is an independent and trusted voice. She has no reasons to defend decisions on therapeutics that weren't the right ones.

3/
Bingham felt
"the government was following a very clear 2-tiered strategy, where CV immunocompromised patients were [.] deprioritised"

"[it] was manifestly wrong, both ethically and morally."

"We did not follow the [goal to] protect the whole population."

4/
It was *cheaper* to let those Clinically Vulenerable people shielding at home without an exit plan.

Then if they were infected to treat them with drugs [which they struggled to access].

5/
Chair of the Antivirals Taskforce, Eddie Gray, was frustrated with the funding approval process for oral antivirals - both the delays and the significantly lower purchase volume than recommended.

6/
Sir Sajid Javid said that by the time he took over, the focus was on vaccines, with less interest on antivirals.

Unlike vaccines, which had an almost unlimited budget, antivirals had no budget - purchase needed Treasury approval, where the clinical case was then questioned.

7/
Two oral antivirals were eventually procured:

Lagevrio (molnupiravir)
Paxlovid (nirmatrelvir / ritonavir)

8/
CVF is concerned that this masks the true picture.

Founder @lara_wong reminded us that some therapeutics, like Paxlovid, are unsuitable for many CV people due to interactions with medications they commonly take.

9/
We need a diverse portfolio of vaccines and antivirals for broader access.

No prophylactic (pre-treatment) has been purchased.

Had the same creativity and appetite for risk been applied to therapeutics as to vaccines, things might have been different.

10/
Sir Chris Whitty stated that antivirals are an area where we are much weaker compared to vaccines, antibodies, and antiparasitics.

He also mentioned there would be a "niche" benefit to the procurement of Evusheld... more on this to come!

11/
2: Access to Antivirals

The system to access therapeutics didn't and doesn't work.

It is significantly more restrictive than 'flu antivirals.

12/
If we can have take away food delivered in 20 minutes, why can’t we deliver life-saving medication just as fast?

13/
CVF reported that the antiviral triage system felt like the Goldilocks story. People were either:

❌ Too ill
❌ Not ill enough

Yet antivirals work best when given early, not delayed.

14/
Simply pre-flagging Clinically Vulnerable people would remove barriers and ensure faster, easier access to antivirals.

If we can get a curry delivered to our door in 20 minutes - we should be able to do the same for life-saving medication.

15/
3: Priority vaccination

Vaccination was a huge success overall.

However, many Clinically Vulnerable (Group 6) individuals faced significant confusion over their eligibility, risking them falling through the gaps in the system.

16/
Clinically Vulnerable people who don’t qualify for spring boosters will be blocked from accessing vaccines this autumn, stripping protection from millions who remain at risk from Covid.

17/
Vaccination centers were overcrowded and lacked proper ventilation.

Drive-thru centres were a great example of a safer alternative.

Improvements are essential to protect the Clinically Vulnerable - now!

18/
4: Children's Vaccines

The risk to children impacts Clinically Vulnerable households.

Media suggested children weren’t at risk, but some were - and some tragically died. It’s vital to acknowledge this reality.

19/
There was a delay in decisions on children's vaccines. When offered, the message was vague and non-urgent, rather than engaging families.

This led to lower uptake and overlooked Clinically Vulnerable households. More consideration was needed.

20/
5: Evusheld

Evusheld was a missed opportunity for a very vulnerable group - the immunosuppressed.

We disagree with Sir Chris Whitty and JVT, who suggested it became less important once vaccines were effective. The reality is, vaccines didn’t protect them!

21/
Dame Kate Bingham said the vaccine rollout doesn’t protect those without an immune system.

Clive Dix cited *cost* as the reason Evusheld wasn’t purchased.

Chris Whitty called it "niche" use - but 1 in 38 people is hardly niche.

22/
Conclusion:

πŸ’™Therapeutics poor relation of vaccines
πŸ’œThe system for accessing antivirals doesn’t work
πŸ’— Healthcare ventilation needs improving
πŸ’™ Vaccination of children = missed opportunity
πŸ’œ Evusheld = missed opportunity

23/
Theme:

πŸ’”Clinically Vulnerable were overlooked
πŸ’”Their needs underappreciated
πŸ’”And voices not heard

24/
Clinical Vulnerability must be recognised under the Equality Act to embed their protection in law and decision-making, ensuring they are not relegated to the second-tier of a two tier system again.

25/
If you can, please support our fundraiser
- which ends tonight at 23:59!

And don't forget to like and share. Everything helps!

26/
crowdfunder.co.uk/p/clinically-v…

β€’ β€’ β€’

Missing some Tweet in this thread? You can try to force a refresh
γ€€

Keep Current with Clinically Vulnerable Families πŸ’™πŸ’œπŸ’—

Clinically Vulnerable Families πŸ’™πŸ’œπŸ’— Profile picture

Stay in touch and get notified when new unrolls are available from this author!

Read all threads

This Thread may be Removed Anytime!

PDF

Twitter may remove this content at anytime! Save it as PDF for later use!

Try unrolling a thread yourself!

how to unroll video
  1. Follow @ThreadReaderApp to mention us!

  2. From a Twitter thread mention us with a keyword "unroll"
@threadreaderapp unroll

Practice here first or read more on our help page!

More from @cv_cev

Jan 29
🚨Prof Sir Pirmohamed

"Would you support the development of a more diverse portfolio of vaccine formats and antivirals, both as part of future pandemic preparedness plans and during [.] 'peace time' to ensure that Clinically Vulnerable groups are adequately protected?"

1/
"Absolutely, I think it is really important to make sure that we have good therapeutics and vaccines for the whole population."

2/
Q - Why is it important to have that breadth of formats?

...not many [immunosuppressed] were involved in the initial trials.

We now know [.] that booster doses help in terms of vaccine efficacy.

2/
Read 5 tweets
Jan 21
🚨Dame Kate Bingham🚨
Dubbed the "hero in a pink jacket πŸ’•"

On Evusheld:
"I felt very strongly [.]. We were following a very clear 2 tier strategy where the CV immunocompromised were being deprioritised [.] I felt that was *manifestly* wrong both ethically and morally [.]"
1/🧡
The above video was taken out of sequence. The below should give more context...

KB "So actually, the first goal was around protecting the UK population."

CTI [Hugo Keith KC]
"Do you think you succeeded on securing or making available those monoclonal antibodies?"

KB "No!"
2/
Kate goes on to make the argument that by not protecting this population, we were also promoting viral mutation and the evolution of variants.

3/
Read 23 tweets
Jan 17
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/
Read 21 tweets
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

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3/month or $30/year) and get exclusive features!

Become Premium

Don't want to be a Premium member but still want to support us?

Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal

Or Donate anonymously using crypto!

Ethereum

0xfe58350B80634f60Fa6Dc149a72b4DFbc17D341E copy

Bitcoin

3ATGMxNzCUFzxpMCHL5sWSt4DVtS8UqXpi copy

Thank you for your support!

Follow Us!

:(