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

Feb 25
This 3yr anniversary that won't be in the news!

When the UK government rolled out the "Living with Covid" policy it simply scrapped protections and shifted to personal responsibility. For most, it meant "back to normal." For Clinically Vulnerable people, life became harder.
1/๐Ÿงต Image
The plan was based on a single assumption: that vaccines alone would be enough... vaccines due to be withdrawn this Autumn.

But for millions who are Clinically Vulnerable, vaccines werenโ€™t a magic bullet. Protection wasnโ€™t universal and some were left with little to none.

2/
๐Ÿ˜€Mask mandates ended
๐Ÿ“ฅFree tests were phased out
๐Ÿ‘ฉโ€๐Ÿ‘ฉโ€๐Ÿ‘งโ€๐Ÿ‘ฆSelf-isolation was no longer required

Covid was treated as a personal problem, not a public health issue. If you got sick, you were on your own.

3/
Read 11 tweets
Feb 18
๐Ÿ˜…CVF are relieved to announce that we will be representing you in the final section of the UK Covid-19 Inquiry looking at the ๐—œ๐—บ๐—ฝ๐—ฎ๐—ฐ๐˜ ๐—ผ๐—ป ๐—ฆ๐—ผ๐—ฐ๐—ถ๐—ฒ๐˜๐˜†.

It will consider the effects on keyworkers, vulnerable populations, bereaved, & mental health.

1/12 *Stick with this*
Protective measures were often described as "restrictions" and the lifting of measures described as the return of "freedom".

2/
๐Ÿš— Seatbelts were once seen as a "restriction" by some, but today with evidence & awareness, they are now considered essential for safety.

๐Ÿ’จ๐Ÿ˜ท The Covid pandemic was a missed opportunity to normalise airborne protections that protect health and save lives.

3/
Read 12 tweets
Jan 31
๐ŸšจClinically Vulnerable Families ๐Ÿ’™๐Ÿ’œ๐Ÿ’—

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/
Read 26 tweets
Jan 29
๐ŸšจProf 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 23
๐ŸšจJCVI - Wei Shen Lim๐Ÿšจ

Find out more about what led to his reaction below โฌ‡๏ธ

1/๐Ÿงต
Do you agree that mRNA COVID-19 vaccine protection has been shown to wane after 5-6m?
WSL: Yes

Covid-19 has not transitioned into a seasonal virus like influenza?
WSL: Yes

If so, why did the JCVI not recommend more frequent vaccinations for all clinically vulnerable groups?

2/
To explain:
"Clinically Vulnerable" is defined by the JCVI in the vaccine Green Book. They are all those who qualify for annual autumn vaccines based on risk.

A small subset are also offered vaccines in spring. Those 75+, care home residents and severely immunosuppressed.
3/ Image
Read 6 tweets
Jan 21
๐ŸšจDame Kate Bingham๐Ÿšจ
Dubbed the "hero in a pink jacket ๐Ÿ’•"

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 [.]"
1/๐Ÿงต
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

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