Clinically Vulnerable Families ๐Ÿ’™๐Ÿ’œ๐Ÿ’— Profile picture
๐—–๐—ผ๐—ฟ๐—ฒ ๐—ฃ๐—ฎ๐—ฟ๐˜๐—ถ๐—ฐ๐—ถ๐—ฝ๐—ฎ๐—ป๐˜ in the ๐—จ๐—ž ๐—–๐—ผ๐˜ƒ๐—ถ๐—ฑ-๐Ÿญ๐Ÿต ๐—œ๐—ป๐—พ๐˜‚๐—ถ๐—ฟ๐˜† #FBCV (follow back CV) and JOIN us on FB โ€ƒโ€ƒ ๐Ÿ“ธcv_cev ๐ŸŸฆโ˜๏ธ@cvcev.bsky.social
Jul 28 โ€ข 10 tweets โ€ข 3 min read
๐Ÿงต New research shows that stringent Covid restrictions significantly reduced excess deaths during the early pandemic. The Independent  +  Stricter Covid mask rules could've saved hundreds of thousands of lives, new study finds  Story by Josh Marcus โ€ข 1d  Virus Outbreak Philadelphia  Copyright 2022 The Associated Press. All rights reserved. 2/ The study found that if all US states had adopted the strongest measures, excess deaths could have been reduced by 10% to 21%. Boris Johnson at podium 2 ๐Ÿ‡ฌ๐Ÿ‡ง flags behind him On the podium 'Stay home, Protect the NHS, image X over 'Save Lives'.
Jul 20 โ€ข 12 tweets โ€ข 5 min read
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
Jul 19 โ€ข 7 tweets โ€ข 3 min read
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
Jul 6 โ€ข 15 tweets โ€ข 5 min read
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
Jul 3 โ€ข 4 tweets โ€ข 2 min read
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
Jun 29 โ€ข 6 tweets โ€ข 3 min read
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/
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Jun 25 โ€ข 10 tweets โ€ข 4 min read
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.
May 23 โ€ข 6 tweets โ€ข 3 min read
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/
May 5 โ€ข 8 tweets โ€ข 3 min read
๐Ÿ˜ท Safer voter ID checks, Hampshire trial

โžก๏ธ Equality Impact Assessments (and the Equality Act) must be *urgently updated* to consider Clinically Vulnerable people, and others who mask, ๐—ฏ๐—ฒ๐—ณ๐—ผ๐—ฟ๐—ฒ the General Election.

๐Ÿšจ PLEASE ๐Ÿšจ Repost this to MPs ๐Ÿšจ

1/ #MyMaskMyVote It was simple, easy, and a great start.

Many thanks to @EastleighBC ๐Ÿ‘

STEP 1 (SHORT TERM)
โœ…๏ธ Staff training
โœ…๏ธ Outside ID check
โœ…๏ธ CO2 monitor (at one polling station)
โœ…๏ธ Main door open

2/ #MyMaskMyVote Clinically Vulnerable Families  Reasonable Adjustments / Airborne Mitigations required for Clinically Vulnerable people  SHORT TERM (for May '24)  Support masked voters - sensitivity training for staff  Perform ID checks outside as standard for mask wearers  ID checking staff:  Test negative, wear FFP2 min mask and distance  Improve natural ventilation inside the building: open doors and windows for duration of use of the building  Monitor CO2 as a proxy for rebreathed air  <700ppm = suitable  >800ppm = limitยน  NB/ Ventilation expert advice required on positioning. High quality NDIR COโ‚‚ mon...
Apr 11 โ€ข 12 tweets โ€ข 5 min read
๐—˜๐—ฎ๐˜ ๐—ข๐˜‚๐˜ ๐—ง๐—ผ ๐—›๐—ฒ๐—น๐—ฝ ๐—ข๐˜‚๐˜

When did focus groups replace the need for appropriate Equality Impact Assessments?

#EOTHO was discriminatory at best (vulnerable people didn't benefit).

1/๐Ÿงต
theguardian.com/business/2024/โ€ฆ "The documents reveal that polling for the Treasury in June 2020 found that only 13% agreed the government should create incentives for people to spend on eating out[.]."

Even the public did not agree!

2/
Apr 11 โ€ข 9 tweets โ€ข 4 min read
At the #CovidInquiry yesterday.

Our barrister @MaryRachel_McC reiterated @AdamWagner1's previous submission that Clinically Vulnerable people need to be considered as a separate equality group.

@Kim_LHarrison @ShaneSmith_Law
@SlaterGordonUK @DoughtyStPublic
1/๐Ÿงต The new needs of Clinically Vulnerable people, since the emergence of Covid, were not considered as public health measures were withdrawn.

Clinically Vulnerable people, to this day, are struggling to safely access:

๐Ÿ’™ Healthcare
๐Ÿ’œ Workplaces
๐Ÿ’— Schools and beyond...
2/
98%  of Clinically Vulnerable people feel that healthcare is unsafe  [Poll of 534 Clinically Vulnerable people March 2024]  Clinically Vulnerable Families
82%  of Clinically Vulnerable households have lost work or retired early due to high Covid risks.  [Poll of 364 Clinically Vulnerable people March 2024]  Clinically Vulnerable Families
Apr 6 โ€ข 9 tweets โ€ข 4 min read
Yesterday was a very bad news day for UK people with poor immune protection against Covid.

The SUPERNOVA trial for the updated version of Evusheld is delayed, and so NICE is now not set to report until the end of February 2025.


1/๐Ÿงต nice.org.uk/guidance/indevโ€ฆ
Image People in this group include: transplant patients, whose immune systems must be heavily suppressed to prevent them destroying their new organs; or people with blood cancers.

Below are some further examples of high risk groups:

2/ Image of graph showing risks for certain conditions. List ordered from highest risk to lower (also high risk).  Solid organ transplant Renal transplant Bone marrow transplant Immunosuppressants Rare neuro disease Sickle cell disease CKD stage 5 Blood or bone marrow cancer Cirrhosis of the liver
Mar 30 โ€ข 6 tweets โ€ข 3 min read
๐Ÿšจ Mask wearing became heavily politicised even before it was common practice in 2020.

Now, we are finding that even high-risk people face discrimination despite relying on masks as an essential measure to protect health.

1/๐Ÿงต #MaskDiscrimination
โฌ‡๏ธโฌ‡๏ธโฌ‡๏ธ
clinicallyvulnerable.org/post/interviewโ€ฆ โฌ†๏ธ In our first anonymous blog, a CVF member shares the challenges they encountered whilst job-seeking as a mask wearer.

Not all CV people are covered by disability laws, which enable 'reasonable adjustments' and even those who do qualify still struggle.

2/ #MaskDiscrimination Masked interviewee in an office setting. Four interviewers sit, unmasked, wearing disparaging faces.
Mar 23 โ€ข 11 tweets โ€ข 4 min read
๐ŸงตThis article flags some important issues faced by people with learning disabilities (LD), their experiences regarding Do Not Resuscitate orders.

๐Ÿšจ However, for Clinically Vulnerable (CV) people (including those with LDs), several aspects of the article are highly problematic: Thousands of disabled people died after 'Covid treatment withheld', inquiry to probe  EXCLUSIVE  Mencap says Do Not Resuscitate notices were placed on the medical files of many people with Down's syndrome, autism and other learning disabilities who were otherwise healthy before contracting the virus By primarily discussing the impact on people with LDs, especially those who were not Clinically Vulnerable *which is important*, it inadvertently marginalises the experiences of Clinically Vulnerable people (most who don't have LDs but all are CV).

2/

inews.co.uk/news/politics/โ€ฆ
Mar 21 โ€ข 5 tweets โ€ข 3 min read
๐Ÿ“ข It seems the BBC may not be pleased that Clinically Vulnerable people have shared video clips from Casualty and are now complaining.

Their potentially discriminatory (against us) content has now been removed from Facebook.

1/๐Ÿงต

BBC Studios blocked your video because it may contain content that they own.
There are changes to your video because of a copyright match  The following actions were applied to your video by BBC Studios, because it may contain 1 minute and 36 seconds of content they own:  X  Your video was made unavailable by the rights owner. Applied in 5 territories  Copyrighted content found in your video  Audio segment 00:00-01:36  Video segment 00:00-01:36  Image: of doctor acting in Casualty   Subs: "which could've been really, really serious"
The content still remains on iPlayer.

2/ IPlayer image of episode with a Fire lady holding a helmet and a medic outside an ambulance.  ONE
Mar 19 โ€ข 8 tweets โ€ข 3 min read
๐Ÿšจ Andrea was DENIED her vote when new #VoterID laws clashed with her health need to wear a mask.

Her experience highlights one of the new barriers faced by Clinically Vulnerable people.

#MyMaskMyVote๐Ÿ˜ท
๐Ÿงต/1

Her situation isn't just about one election or one person. It's about ensuring democracy is inclusive for ALL.

In the post-Covid era, the UK government is ignoring the ongoing impacts on its most vulnerable.

#MyMaskMyVote๐Ÿ˜ท
/2



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Mar 14 โ€ข 13 tweets โ€ข 5 min read
Hi @BBCCasualty, your recent episode will contribute to the discrimination faced by people who are Clinically Vulnerable to Covid.

It concerns a character called Aishling, a lady wearing an FFP2 mask, who had isolated herself for four years.

1/๐Ÿงต Episode 4 - 'Trauma'

Aishling's "Covid anxiety" had resulted in her overdosing on anxiety medication and being unable to drive.

To assist this narrative, she was completely healthy and, therefore, clearly portrayed as a bit mad.

2/
Feb 21 โ€ข 11 tweets โ€ข 4 min read
โš ๏ธ #SafeHealthcare

. *REALLY IMPORTANT THREAD *

#BREATHTAKING shows PPE used to protect staff.

Masks
๐Ÿ’™Should tested be for "fit"
๐Ÿ’œBe high quality FFP3 masks sealed around the face to prevent airborne infections
๐Ÿ’—Be ๐˜„๐—ผ๐—ฟ๐—ป ๐˜๐—ผ ๐—ฝ๐—ฟ๐—ผ๐˜๐—ฒ๐—ฐ๐˜ ๐˜๐—ต๐—ฒ ๐—ถ๐—ป๐—ฑ๐—ถ๐˜ƒ๐—ถ๐—ฑ๐˜‚๐—ฎ๐—น Image from Breathtaking. Patient unmasked with oxygen tube in nose. Doctor in full PPE. .@doctor_oxford explains, healthcare workers are not given FFP3s - even treating ๐—ถ๐—ป๐—ณ๐—ฒ๐—ฐ๐˜๐—ถ๐—ผ๐˜‚๐˜€ ๐—ฝ๐—ฎ๐˜๐—ถ๐—ฒ๐—ป๐˜๐˜€. If CV themselves JOBS and LIVES have been lost.

There was ๐—ป๐—ฒ๐˜ƒ๐—ฒ๐—ฟ a policy to wear FFP3 to protect patients. So staff don't mask for uninfected vulnerable.
Feb 11 โ€ข 8 tweets โ€ข 3 min read
Lee-Anne, who has a Clinically Vulnerable family, has just spoken to @carolvorders about her experience - as her child was off-rolled (which is an illegal practice) rather than offering him a safe learning environment.

This is discrimination - education is a human right.

1/ She, and others like her, have saved the government money. She has to take the financial burden of educating her child.

@carolvorders noted parents and medics are asking for #CleanAir๐Ÿ’จ.

We are!!!

When we upgrade buildings for RAAC we MUST be improving ventilation.
2/
Feb 7 โ€ข 9 tweets โ€ข 3 min read
โš ๏ธ Covid vaccine access likely to reduce from Autumn 2024 โš ๏ธ

๐—ง๐—Ÿ๐——๐—ฅ : Potentially bad news for "such groups as ๐—ต๐—ฒ๐—ฎ๐—น๐˜๐—ต๐—ฐ๐—ฎ๐—ฟ๐—ฒ ๐˜„๐—ผ๐—ฟ๐—ธ๐—ฒ๐—ฟ๐˜€ and ๐—ต๐—ผ๐˜‚๐˜€๐—ฒ๐—ต๐—ผ๐—น๐—ฑ ๐—ฐ๐—ผ๐—ป๐˜๐—ฎ๐—ฐ๐˜๐˜€ ๐—ผ๐—ณ ๐—ถ๐—บ๐—บ๐˜‚๐—ป๐—ผ๐˜€๐˜‚๐—ฝ๐—ฝ๐—ฟ๐—ฒ๐˜€๐˜€๐—ฒ๐—ฑ ๐—ถ๐—ป๐—ฑ๐—ถ๐˜ƒ๐—ถ๐—ฑ๐˜‚๐—ฎ๐—น๐˜€. GOV.UK  Menu  Home >  COVID-19 spring 2024 and future vaccination programmes: JCVI advice, 4 December 2023  Department of Health & Social Care  Independent report  JCVI statement on COVID-19 vaccination in spring 2024 and considerations on future COVID-19 vaccination, 4 December 2023  Published 7 February 2024 Today's statement from the JCVI is jaw dropping.

What starts off as a seemingly innocuous announcement of the usual spring vaccine groups who are eligible for spring boosters veers off at the end with some bombshells. Advice on spring 2024 vaccination  In spring 2024, the Joint Committee on Vaccination and Immunisation (JCVI) advises that a COVID-19 vaccine should be offered to:  โ€ข adults aged 75 years and over  โ€ข residents in a care home for older adults  โ€ข individuals aged 6 months and over who are immunosuppressed (as defined in tables 3 or 4 in the COVID-19 chapter of the Green Book)  This should be offered around 6 months after the last vaccine dose, although operational flexibility around the timing of the spring dose in relation to the last vaccine dose is considered appropriate (with a minimum in...
Feb 2 โ€ข 17 tweets โ€ข 4 min read
This is interesting but also helpful.
"the ads may not have broken the rules"

Here are the rules:


Now we need to work out which rules we believe were broken and how... ๐Ÿงต asa.org.uk/codes-and-ruliโ€ฆ


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1. Social Responsibility (1.3)
The adverts are socially irresponsible, suggesting children with symptoms of illness, such as a runny nose or stomach ache (which may be symptoms of Covid or other serious conditions), should still attend school.