Clinically Vulnerable Families ๐Ÿ’™๐Ÿ’œ๐Ÿ’— Profile picture
Jul 20 โ€ข 12 tweets โ€ข 5 min read โ€ข Read on X
๐Ÿงต The #UKCovidInquiry's first report on ๐—ฅ๐—ฒ๐˜€๐—ถ๐—น๐—ถ๐—ฒ๐—ป๐—ฐ๐—ฒ ๐—ฎ๐—ป๐—ฑ ๐—ฃ๐—ฟ๐—ฒ๐—ฝ๐—ฎ๐—ฟ๐—ฒ๐—ฑ๐—ป๐—ฒ๐˜€๐˜€ has been published.

While it addresses many critical areas, it missed significant issues faced by Clinically Vulnerable (CV) families. Hereโ€™s what you need to know...

1/ #CVAwareness
The reportโ€™s focus on general preparedness overlooked the specific needs and challenges of CV people.

Our community faced unique risks and often felt abandoned in the early stages of the pandemic. Our exclusion from *this module* (M1) of the inquiry was a glaring oversight.
2/ Clinically Vulnerable Families  are the ONLY Core Participant at the UK Covid-19 Inquiry representing CV / CEV / Immunosuppressed voices  We can:  Access Evidence  Make opening & closing statements  Ask the witnesses questions
Key areas missed include:

๐Ÿ’” The lack of tailored guidance for CV families
๐Ÿ˜ท Insufficient availability of appropriate PPE for home use
๐Ÿซ‚ Inadequate mental health support

CV households had to navigate the crisis alone, compounding their stress and isolation.

3/ #CVAwareness
The report also failed to address the systemic issues in healthcare access for CV people.

๐Ÿฅ Delayed treatments / limited availability of in-person consultations put these vulnerable people at greater risk.

We are in the upcoming Healthcare module (M3).

4/ #CVAwareness The following is the list of Module 3 Core Participants in the UK Covid-19 Inquiry. Name of Organisation/Individual Recognised Legal Representative Module Date of Designation Covid-19 Bereaved Families for Justice Elkan Abrahamson (Broudie Jackson Canter) Module 3 2023-01-17 Covid-19 Bereaved Families for Justice Cymru Craig Court (Harding Evans Solicitors) Module 3 2023-01-17 Northern Ireland Covid-19 Bereaved Families for Justice Conal McGarrity (P.A Duffy & Co Solicitors) Module 3 2023-01-17 Scottish Covid Bereaved (formerly The Scottish Covid-19 Bereaved Families for Justice) Aamer Anwa...
๐Ÿ‘ฉโ€๐Ÿซ Education was another key area. CV children and those in CV households faced challenges without remote learning / safe schools. The lack of appropriate protective policies disrupted their education significantly.

We hope to have the opportunity to assist the Inquiry in M8.
5/


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๐Ÿ’ท Economic support mechanisms often did not account for the additional costs borne by CV families, such as home delivery charges and increased utility bills due to shielding or informal shielding.

Financial assistance was vital but insufficiently targeted.

6/ #CVAwareness
For future preparedness, itโ€™s vital that the voices of CV people are heard. Our experiences offer valuable insights into creating a more inclusive and effective response framework.

7/ #CVAwareness CLINICAL VULNERABILITY IS AN EQUALITY ISSUE  We are the highest risk of the worst Covid outcomes. Government policy never considered our new needs.  98% of CV people feel healthcare is unsafe [Mar '24]  98%  82% of CV households lost work / retired early due to high Covid risks [Mar '24]  65% of mask wearers have experienced Mask Abuse [Jan '24]  1 in 5 CV families withdrew children from unsafe schools [Sept '22]  Clinically Vulnerable Families
The inquiry must broaden its scope to consider the impact on CV communities in upcoming modules. Ignoring their plight risks repeating the same mistakes in future health crises.

We are still *not* identified in their Equalities and Human Rights statement:

8/ #CVAwareness
Home >  Documents  Equalities and Human Rights statement  Published: 6 July 2023  Type: Publication  Module: Not Applicable  This document explains how the UK Covid- 19 Inquiry will consider any disparities evident in the impact of the pandemic on different categories of people, and how it will adopt the 'PANEL' human rights principles in its work.
UK Covid-19 Inquiry  Embedding equalities and human rights in the UK Covid-19 Inquiry  This document explains how the UK Covid-19 Inquiry will consider any disparities evident in the impact of the pandemic on different categories of people, and how it will adopt the 'PANEL' human rights principles in its work.  Equalities  The terms of reference for the UK Covid-19 Inquiry state that the Inquiry will consider any disparities evident in the impact of the pandemic on different categories of people, including, but not limited to, those relating to protected characteristics under the Equality A...
We have raised concerns to the that we are missing from this statement for a considerable length of time now. Perhaps almost 18 months?

Equity can only be achieved if we recognise that people have different needs and circumstances. #CVAwareness !

9/
For more detailed information on the report, visit the UK COVID-19 Inquiry website.

Share your thoughts with us below.

10/ #CVAwareness
covid19.public-inquiry.uk/reports
If you are interested in contributing to our work and you come from a Clinically Vulnerable household.

STEP 1: Join us on FB



11/ #CVAwarenessfacebook.com/groups/clinicaโ€ฆ
STEP 2: Sign up to our online event to meet our Covid-19 Inquiry legal team on 24th July.

* Apply by Monday 22nd July *
โฌ‡๏ธโฌ‡๏ธโฌ‡๏ธ

โฌ†๏ธโฌ†๏ธโฌ†๏ธ

STEP 3: Keep fighting for #CVAwareness and #CVRights ๐Ÿ’ช

12/ clinicallyvulnerable.org
24 JULY  Meet our our legal legal team  Clinically Vulnerable Families members are invited to meet our Covid-19 Inquiry legal team at 6pm on the 24th July.  - Sign up before 22nd July!  Slater Gordon  Lawyers  Doughty Street Chambers

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More from @cv_cev

Jul 19
๐ŸŽ‰Happy #CVAwareness Day! ๐ŸŽ‰

๐ŸŽฅ Please share your stories, masked selfies, and short videos ass a Quote Tweet of this one! We will all โ™ป๏ธ

4๏ธโƒฃ years since Freedom Day!
Update your profile pic โฌ‡๏ธ

๐Ÿงต PLEASE RETWEET
4 years on, and we are in ANOTHER wave.

The constant risk of infection has made lives more difficult, and the damage caused by infection. We are still more likely to die and develop post viral conditions.

2/ 9.2x increased risk of death 5.4x increased risk of Long Covid
Clinically Vulnerable people were rejected from the first 2 sections of the #CovidInquiryUK, unable comment on planning for future pandemics, even though by Baroness Hallett's own admission we will "suffer the most".

3/
Read 7 tweets
Jul 6
1/ ๐Ÿงต Concerned about masked voting?

Our data, collected thanks to mask wearers during the General Election, reveals troubling issues...

#MyMaskMyVote๐Ÿ˜ท #CleanAir๐Ÿ’จ SAFER VOTING  #MyMaskMyVote  Clinically Vulnerable Families members have audited the safety and accessibility of polling stations during the UK General Election:  โ€ข Safety of voter ID checks  โ€ข Indoor air quality - COโ‚‚ levels  Ventilation open doors / windows
2/ Disenfranchisement is real.

Voter ID checks varied significantly:
- 38% were IDed with a mask on
- 42% asked to de-mask indoors
- 26% removed their mask indoors
- 1% โ›”๏ธ were disenfranchised โ›”๏ธ

#MyMaskMyVote๐Ÿ˜ท VOTER ID CHECKS  #MyMaskMyVote  38% were IDed with a mask on  42% were asked to de-mask indoors  26% removed their mask indoors  1% were disenfranchised  General Election 2024  Clinically Vulnerable Families
3/ Some voters were masking to protect others from Covid.

Nobody should have to de-mask indoors. Everyone deserves to vote safely.

#SafeVoting๐Ÿ—ณ Privacy Matters @PrivacyMatters. 1d  Still feeling like shit and weak with Covid. The polling station is 5 minutes walk. So will mask up. Then rest up.  Almost ready to vote. But first, some prep for the office assistant  #DogsAtPollingStations #GE2024 YO  #ThingsCanOnlyGetBetter
Read 15 tweets
Jul 3
๐ŸŸฅ๐ŸŸจ๐ŸŸฉ๐ŸŸช๐ŸŸฆGENERAL ELECTION '24๐Ÿ—ณ

We need your help๐Ÿ™

TODAY
๐Ÿ’Œ Even if you have a postal vote:
Contact your Returning Officer to ask for reasonable adjustments for mask wearers

Some people will be caught off guard as the 1st GE with voter ID

TOMORROW
Audit Accessibility...
๐Ÿงต GENERAL ELECTION  #MyMaskMyVote  The Electoral Commission have informed us that individuals need to contact Returning Officers to ask for 'reasonable adjustments':  โ€ข Outside demasking for ID checks  Distanced ID checks  โ€ข Masked staff  โ€ข Covid tested staff  โ€ข Ventilation open doors / windows
๐Ÿ—“ TODAY

Contact Returning Officers to ask for the following to make voting safer:

๐ŸชŸwindows / doors open
๐Ÿ’จoutdoor ID check
โ†”๏ธdistanced
๐Ÿ˜ทmasked staff
โœ…๏ธcovid tested

NB/ Screens for veil removal are not appropriate for airborne transmission.

2/
gov.uk/contact-electoโ€ฆ
๐ŸŸฅ๐ŸŸจ๐ŸŸฉ๐ŸŸช๐ŸŸฆ4th JULY๐Ÿ—ณAt the polls๐Ÿ—ณ

โœ…๏ธ YOU CAN STILL HELP without a mask or without contacting your Returning Officer.
๐Ÿ˜ท If you could mask, it would help more!

๐Ÿ“‹Assess accessibility for us:
-windows/doors open
-outdoor ID check
-distanced
-masked staff
3/
Read 4 tweets
Jun 29
๐Ÿ’™Left is the SmartAir QT3
๐Ÿ’œMiddle is a 3D printer prototype
๐Ÿ’—Right is the AirFanta 4Lite

A quick explainer ๐Ÿงต
If you do use one of these devices, it is worth knowing that whilst they have a net benefit, you really must be in the air stream to experience the most gains*.

* ..and that means being pretty close!

2/
Image
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A quick reminder that the QT3 can be improved by taping. Even with taping, the most gains are up to 40cm - and the closer the better.

Unfortunately, the fan is not very powerful, so the air flow is lower than the others above.

HT @CleanAirStars
3/ Image
Read 6 tweets
Jun 25
๐Ÿงšโ€โ™€๏ธAs I sat in the hall during our Primary School assemblies, I used to watch the fairies dancing within a strip of light from between the curtains.

Little did I know...
1/๐Ÿงต Image
... that when they 'disappeared' that they were still there.

Or that the whole room was filled with them!

2/ Image of a room filled with fairies and sparkles of light.
Oh, and they weren't really fairies...they were 'particulate matter' or PM for short.

Which is kind of mind-blowing when you are taking in all of these different particles. Some will scatter light, and others can absorb it - so you can't always see them.

3/ Image of QuingPing air quality monitor @SmartAirUK reading: 4 (PM10)
Read 10 tweets
May 23
Use of QALYs came up today at the Inquiry.

If you unfamiliar with the term, Wikipedia explains "Critics argue that the QALY oversimplifies how actual patients would assess risks and outcomes, and that its use may restrict patients with disabilities from accessing treatment."
1๐Ÿงต Image
In this context, it might have been used to determine whether people with Clinical Vulnerabilities were worth protecting.

It was never used, not because they didn't try. They attempted it twice.

#CVAwareness
2/
The team of analysts had a go, but they "didn't take it to Ministers because it simply wasn't advanced enough.".

"It would need to be established in 'peace time' so it was valuable in 'war time'."

#CVAwareness
3/
Read 6 tweets

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