Clinically Vulnerable Families ๐Ÿ’™๐Ÿ’œ๐Ÿ’— Profile picture
Feb 21, 2022 โ€ข 32 tweets โ€ข 13 min read โ€ข Read on X
๐Ÿ“ฃ What today's announcement means to us? ๐Ÿงต

This account gives an anonymous voice to Clinically Vulnerable people in our support group on Facebook.

Threats now to:
Lives, jobs, freedoms + safe access to schooling & healthcare.

Join us for support ๐Ÿ‘‡
facebook.com/groups/6185063โ€ฆ
1/
This thread aims to share our members thoughts, each struggling with the broad and significant impacts of the announcement to be made today by Boris Johnson in the HoC.

2/ Freedom for some is being granted at the expense of freedom
"End of any freedom with covid has now been stolen for the vulnerable."

"The mental health of my children going to school will now spiral downwards uncontrollably."

3/ Our death sentence from Covid has now been set.
What will happen to our children?

"End of any freedom for our teenagers to live 'normal' lives."

"My child will be sat in class wondering if her peers will infect her, when she's at highest risk of death from Covid."

4/ My immunosuppressed son has at least been able to meet a few
"It is disgusting when Iโ€™m told to check my child for nits, yet being CEV myself with a CV child in Primary Iโ€™m not told of covid cases but the Govt thinks its ok to spread covid to kids repeatedly [.].Why is covid not mentioned on this school infectious disease control list?"
5/
Many have been forced out of unsafe schools already. @halfon4harlowMP 's so called "Ghost Children" offensive terminology given some may die.

"This means we may likely deregister children from school to protect a CEV family member. Schools arenโ€™t safe. This is unfair."

6/
Don't forget the teachers!
Told not to wear masks. Surrounded by infected children.

"As a teacher with blood cancer I will risk my life every time I step in the classroom."

"As a dedicated Headteacher of a primary school I feel let down and marginalised."

7/
"My life now depends on other people doing the right thing- so terrifying. CEV teacher, Mum and wife."

It is not much to ask
#Testing
#MasksInSchool๐Ÿ˜ท
#HEPA๐Ÿ’จ
(which will pay for itself by reducing sick days)

8/
Forcing people to return to work F2F is meaning people who can contribute to society are choosing between 'lives & livelihoods'.

"My hubby will be forced back to the office, while I will probably have to isolate in a room to keep myself safe this is not freedom for all."

9/ Pre covid I was a valuable, working member of society living
"I have incurable cancer, kept stable by immunosuppressant drugs; I am well enough to work and play an active role in society but how can I once all the measures that help me protect myself against covid are gone?"

10/ Iโ€™ve already had to give my job up as a Teaching Assistant
"I didnt feel safe so resigned from Education. Now have to count the pennies to keep us afloat."

"It feels like all hope of rejoining society is gone now (age 47, immunosuppressed mum, worked and lived a typical, active life pre COVID)."

11/ "This forces me to choose between maintaining life and
Safe access to *not just schools* but anything including vital healthcare will be essentially denied.

"It will be totally impossible to safely receive: eye tests, dental treatment, medical care, vaccines & essential home repairs after โ€˜Freedom Dayโ€™."

12/ It means being isolated from life. It means only attending t
"Iโ€™m left weighing up whether itโ€™s more dangerous to miss my medical appointments and blood tests for my chronic condition, or to attend them?"

"No chance of a near normal life for me now, stay at home indefinitely just to stay alive."

13/
"This terrible decision makes everyone's life more dangerous. It will make my life and other CEV peoples lives smaller, more stressful and for some, unnecessarily, much shorter."

14/ Freedom for some is being granted at the expense of freedom
"Well I'd better plan my own funeral as I will no longer be safe anywhere; CEV is not a choice."

"Sickness absence management policies will mean people with covid DO go to work and WILL pass it on to others, it is much more than a respiratory disease"

15/ "living with COVID" should mean maintaining mitiga
Facing a constant and unending threat to life impacts on mental health for children and adults in affected households. People are dealing with the breakdown of relationships, self harm & suicidal thoughts.

"Samaritans on speed dial."

16/
We need 'reasonable adjustments' or mentally how do we square this circle?1

"As a immunosuppressed parent Iโ€™m now facing the choice of curtailing my young daughterโ€™s life indefinitely or continuously risking my own. These are avoidable choices noone should have to make."

17/
People don't know where to turn.

18/
If we go anywhere we must wear masks. This is about 'Social Responsibility' NOT 'Personal Responsibility'.
"I'm wearing my mask to protect *you*."
#WearAMask๐Ÿ˜ท

19/
"Whereโ€™s the evidence to support this, is it so difficult to wear a mask in crowded indoor places, on public transport and stay at home if you have Covid?"

20/ Look at what theyโ€™re doing to people with this flagrant la
"Maintaining simple measures against Covid 19 wonโ€™t impact the majority but could literally mean the difference between life and death to millions of CEV people. Why donโ€™t we matter enough? Protect the most vulnerable in society!"

21/
"What do the scientists say? I thought we were 'Following the Science'?"

"This terrible decision makes everyone's life more dangerous. It will make my life[.] shorter [and] more stressful [.]."

"This will make our family feel even more like collateral damage."

22/ Why does wearing masks stop us opening up the economy, savin
Transplant patients carry a precious gift.

"This approach makes a mockery of Max and Keira's organ donation law that we fought so hard for. The second chance of life gifted to transplant recipients will be placed in jeopardy.

Callous, careless & cavalier!"

23/
Antivirals ๐Ÿ’Š should be offered to ALL Clinically Vulnerable & elderly patients but only 50% can access these via the Panoramic Trial.

We see this as 'health rationing' since they are already proven.

Immunosuppressed who do qualify struggle to access.
24/
I'm clinically vulnerable at risk of death, why can't I have 100% assurance that I can get life saving antivirals if you insist on putting my life at risk by removing protective measures?"

25/

Everyone knows and loves โค๏ธ an elderly or Clinically Vulnerable person. Vulnerabilities can strike at any time & Covid is causing them.

"You could be diagnosed with cancer tomorrow & require chemo. Youโ€™d be told to avoid infections. Would these rules sit ok with you then?"

26/
Covid is a novel virus. We are still learning so much about it.

We don't want more Clinically Vulnerable people.

We don't want more @LongCovidKids or @LongCovidSOS adults.

Multiple infections are a growing concern.

27/

We need a plan.

To plan for nothing is a nothing of a plan.

So we must with engage with our world class scientists. We are 2 years into the pandemic (yes, it is a pandemic still - ask the @WHO) need a sustainable long term response.

28/

Instead @BorisJohnson frames protections preventing infection & long term damage as "restrictions".
"Restrictions pose a heavy toll on our economy our society, our mental wellbeing & on the life chances of our children."

The Vulnerable have lost the most of all of the above.
29/
Bereaved Families @CovidJusticeUK have and lost loved ones. We fear that their group will continue to grow at a faster rate.

This simply isn't "Learning to Live with Covid" it is shortsighted and will undermine authority in any future effort to respond to new variants.

30/
So we ask for compassion, understanding and the support from the people of Britain.

Please stand with us against removing *protections* which have allowed vulnerable people a small taste of freedom these past months.

It is not acceptable to lock us up indefinitely.

END/

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More from @cv_cev

Nov 27
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
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
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
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
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
Nov 6
Questioning Jenny Harries is "like pinning jelly to a wall", according to one CVF๐Ÿ’™๐Ÿ’œ๐Ÿ’— member!

Thanks @AdamWagner1 for trying!
๐Ÿงฑ๐Ÿฎ๐Ÿ”จ

"People should be enabled to wear what they wish, as long as it's safe."
"FRSMs recommended because of issues of handling and fit-testing."
1/
Would you agree that FFP3 masks, if fit-tested, mean that the Clinically Vulnerable patient *is* safer, they don't just "feel safer"[.]?

๐Ÿ”จ 'Hierarchy of controls'
๐Ÿฎ Don't want to tell people - no harm
๐Ÿงฑ Difference feeling safe and effective PPE. Equally support FRSM

2/
"The evidence of effectiveness between FFP3s and FRSMs in clinical use is very, very small."

3/
Read 6 tweets

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