Clinically Vulnerable Families ๐Ÿ’™๐Ÿ’œ๐Ÿ’— Profile picture
Sep 15 โ€ข 14 tweets โ€ข 5 min read โ€ข Read on X
๐Ÿ“ข Children and Young People Voices report about their pandemic experiences has been released today.

We would be interested in hearing your views. There is a chapter on Clinically Vulnerable families.

We have included screenshots below...

1/
They have recognised that children in CV families took on new caring responsibilities. Many have never been recognised or supported as "Young Carers".

2/ Weight of responsibility: Some children and young people took on responsibilities at  home during the pandemic. As well as carrying the load of practical tasks that needed to be done, such as looking after someone who was ill, taking care of siblings, or sanitising shopping for someone who was clinically vulnerable, some also felt the emotional weight of supporting their family through this time, particularly where people outside of the household could not come and help. Some were also affected by an awareness of the difficulties the adults were going through, including worsening mental hea...
Exposed to adult stress  Riley, aged 22, was living at home during the pandemic with their parents. This was a difficult time for the family because their mum was clinically vulnerable and their sibling, who had moved out, was struggling with an addiction. Living at such close quarters during lockdown - "like you're in a pressure cooker" - exposed them to the stress that their parents were going through and they described starting to share in this rather than feeling like a child any more. "Everyone felt very nervous. So then having that kind of like group worrying... I feel ...
There appears to be confusion in the report between disability (which is a mental or physical impairment) and clinical vulnerability (which are risk factors including health conditions, which puts someone at higher risk of poor outcomes and required shielding etc.).

3/ Heightened fear: Physically disabled children and young people and those with health  conditions, or in clinically vulnerable families, described their feelings of uncertainty, fear and anxiety about the risk of catching Covid-19 and the serious - and in some cases life threatening - implications this could have for them or their loved ones. Children and young people in secure settings also felt vulnerable and afraid of catching Covid-19 when sharing common spaces with other people during the pandemic. Experiencing bereavement during the pandemic could also lead to feelings of heightened fear.
Forgotten by others as a young shielder  Casey, aged 15, has a sibling who is clinically vulnerable. Casey described how she helped to protect her sibling during the pandemic, how hard it was to keep shielding when society opened up after the first lockdown and how she felt that her needs had been completely forgotten by those around her. She felt that people didn't seem to  15  2. Factors that shaped the pandemic  understand that young people were shielding too. "When we came out of [lockdown] but then we were still expected to shield... while everybody else was out and doing stuff, t...
Fear (or derivatives) is mentioned 67x
Anxiety 31x

These words are frequently used in relation to Clinically Vulnerable people or children in CV families - who were managing higher risks without appropriate airborne protections.

4/ 12 This case study reflects how one young person with caring responsibilities for her clinically vulnerable parent was affected by weight of responsibility and heightened fear during the pandemic.  Responsibility and fear looking after someone clinically vulnerable  Nicky, aged 21, described the pressure she felt during the pandemic when caring for her mum, who was clinically vulnerable following a transplant, and the "crippling fear" that she would get ill with Covid-19. With her older sibling living away from home and unable to visit, the responsibility fell solely to her. She d...
There is recognition that CV families faced difficulties when they were infected.

5/ โ˜ Isolating due to contracting Covid-19 was recalled as being difficult and lonely and when this occurred outside of lockdown, some were stressed about the knock-on effects of isolation, for example, missing exams and social events. Some also described feeling worried that they would infect their family members with Covid-19, who might then have worse symptoms. This was particularly acute for those in clinically vulnerable families (see Clinically vulnerable families).
CV / CEV children were worried about getting seriously ill.

6/ Those interviewed who were clinically vulnerable themselves, or had a health condition, described their feelings of anxiety and fear of catching the virus and the implications this could have for them. One child, who was diagnosed with Crohn's disease halfway through the pandemic, described how he viewed that period in two halves - with the first half being far more positive than the second, when the additional burden of having to be extra careful around Covid-19 led to feelings of anxiety about the chance of getting seriously ill from the virus.  "I was more strict with like the socia...
Additonal responsibilities for children in CV families.

7/ Weight of responsibility  22 Other sections in this report highlight how responsibility at home affected some children and young people during the pandemic (see Home and family and Clinically vulnerable families). As well as carrying the load of practical tasks, some also felt the emotional weight of supporting their family, particularly where people outside of the household could not come and help, which could affect wellbeing.
Children in CV families faced food insecurity.

8/ Food shopping while shielding could also be a challenge. Children and young people described their families finding it hard to get delivery slots for online shopping as well as experiencing difficulties with products being available. Going to the supermarket was hard, due to the risks of being out as well as the stress of queueing to get in or shelves being empty, but some households felt there was no choice. Some children and young people described food supplies at home being limited and having fewer snacks. Those who received food boxes 38 at home appreciated this support.  "There we...
CV families were left behind, while others moved on...

9/ It is notable that during lockdown some felt that "everyone was in the same boat" and did not have a reference point for what other families were doing. However, once restrictions eased for others, those interviewed described becoming more aware of what they still could not do and feeling more negatively about shielding requirements and the fact that they were more restricted than other people.  "When we came out of [lockdown] but then we were still expected to shield... while everybody else was out and doing stuff, they seemed to have forgotten about people who were shieldin...
Children in CV families were left to manage safety and faced bullying (discrimination).

10/ 14 Taking precautions when others were not was felt to be particularly tough on the return to school. Some children and young people felt conscious of wearing a mask, using hand sanitiser, or social distancing when others were not and found it upsetting having to justify this to others. One child recalled a school assembly to raise awareness around mask wearing and prevent bullying. However, another child described her experience of being bullied, including a distressing incident of being physically attacked by other pupils for wearing a mask, and felt that her school did not deal with this...
Children in CV households were locked out of education.

11/ 16 Some children and young people had to delay their return to school because the risks of catching Covid-19 were felt to be too high, and others went back but attended intermittently. In some cases, they asked their school to find a way for them to attend online, but were unsuccessful and had to resort to learning from home on their own, or in one case finding a fully online school. These children and young people described how excluded and unsupported they felt by their school and their local authority and how hard it was to be in dispute over their attendance.  "My mum kept me off b...
Long-term significant harms for their health, wellbeing, and education.
12/ Continuing impacts  Some of those interviewed highlighted ongoing impacts for them, affecting health, wellbeing, and education. Those who had been unable to return to secondary school after lockdowns described the ongoing impacts of having their education disrupted, including taking an extra year to complete secondary education, being disappointed in the grades they achieved, and feeling more limited in their options for further education.  "I couldn't get the grades that I wanted... Now I am in college later, way later than I'd like to be because I could be going into uni... but no I'...
The report has identified many serious impacts on children who were Clinically Vulnerable themselves or who lived in CV families.

13/ 4 Concluding remarks  1 These findings highlight how children and young people in clinically vulnerable families, or who were clinically vulnerable themselves, were affected by both practical and emotional challenges during the pandemic. The need to be diligent in taking precautions, and the ongoing worry of what might happen if someone at home caught Covid-19, meant that these children and young people could be affected both by weight of responsibility and heightened fear.  2 Children and young people in these circumstances were also affected by experiences of exclusion once restrictions e...
Please take a look at the full report and comment below.

Download here:


14/covid19.public-inquiry.uk/documents/inq0โ€ฆ

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More from @cv_cev

Jun 11
The final preliminary hearing for the Children & Young Peopleโ€™s module was today, CVF, again, made the case for safety.

Children's deaths *would* have been higher if many Clinically Vulnerable families had not kept their children away from schools.

โš ๏ธLong thread
1/
๐Ÿ’” 88 children died (2020 - October 2022)

In the first year of the pandemic:

๐Ÿฅ6,338 paediatric Covid admissions
โค๏ธโ€๐Ÿฉน259 needed intensive care

2/
Schools were 'closed' due to the balance of risks:

โš–๏ธRisk of to children when not in school
โš–๏ธRisk of to everyone from Covid-19 transmission

3/
Read 26 tweets
Mar 17
Today @BBCMoreOrLess discussed pandemic impacts on Children & Young People:

"It turned out that they would be spared from the worst impacts of the disease."

The specific impacts on CV children, those in CV families or struggling with Long Covid were barely considered.

1/๐Ÿงต
Dr Munroe dismissed risks to children:

"Covid itself had a relatively small clinical impact on young people."

In reality, CEV children were told to shield due to their risks. Over 200 children have died, and with a different response those deaths may have been preventable.
2/
This was the only section in which @TimHarford did point to the direct harms:

"For a few young people, Covid WAS a very serious disease. Long Covid has also been a problem for some. And young people did die."

Unfortunately, it was immediately followed up with...

3/
Read 21 tweets
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

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