What do you plan to do after July 19th if you have a vulnerable child?

[jumpbounce]

I have no idea what we should do now!
We shielded from March 2020 to April 2021 as an entire family unit, DC didn't go to school either until April 21.
It felt there was some sense of normality with cases low, our children had been able to return to school and we were able to take them to outdoor venues and meet other children outdoors.
It now feels like with the removal of all restrictions and the way cases are currently rising that the risk is now going to be higher than it ever has been in the pandemic. No bubbles or isolations within schools and also the change so that under 18's don't have to isolate at all?
So now essentially it isn't safe to take our children anywhere as we have a CEV child who isn't vaccinated. Advice from the government is for CEV (vaccinated adults) to take greater precautions.
How do you plan to take greater precautions without going back to completely shielding again?

@caramellatteplease I'm sorry to hear about your son, mitochondrial disease is a tough diagnosis. And there is always a risk due to viral infections. What I am saying is that this isn't likely to be any greater with COVID than other viruses. That doesn't make it any easier for you, I know that. How did you manage the risk prior to the pandemic?

The pandemic has highlighted/amplified the anxiety/concerns that families of children with chronic diseases live with all the time. But it is important to know that although there is a risk that a viral infection like SARS-CoV-2 can make your child unwell, that risk has been overstated the majority of the time.

I have read the full thread, my series of messages weren't linked, sorry.
What I was trying to respond to in the OP was about the 'need' for greater precautions - this shouldn't really need to be more than families were taking to protect their child from winter respiratory viruses prior to the pandemic.

For what it is worth - I don't think we should be relaxing in a few weeks. We should be encouraging EVERYONE to be more responsible when they are unwell with upper respiratory tract symptoms (hand washing, masks, social distancing etc) ALWAYS, not just when they are afraid for their own health. And we should vaccinate children who are vulnerable, and their siblings. The Pfizer vaccine is now authorised in all ages in the USA and they will be vaccinating younger children soon. As that data filters through it will be much easier for decisions to be made about vaccinating vulnerable children. 3 million adolescents have been vaccinated there, largely without complication, which is very reassuring (minor signal for self-limiting heart inflammation).

The vast majority of children who have 'damaged lungs' (eg cystic fibrosis, chronic lung disease etc) haven't actually experienced severe disease with SARS-CoV-2 infection.

J Cyst Fibros
. 2021 Jan;20(1):25-30. doi: 10.1016/j.jcf.2020.11.021. Epub 2020 Dec 3.
Clinical characteristics of SARS-CoV-2 infection in children with cystic fibrosis: An international observational study

105 children with CF and COVID - The majority (71%) of children were managed in the community during their COVID-19 illness. Out of 24 children admitted to hospital, six required supplementary oxygen and two non-invasive ventilation.

I’ve just written to JVCI this morning. I got a template letter from Contact (below) and updated it to emphasise that a decision about CEV/CV children should be prioritised (even if they can’t decide about the ‘non vulnerable’ yet). It’s over a month since the MHRA approved the Pfizer vaccine for 12-15 in UK. I’m so disappointed that the JCVI has just sat on this approval. Our CCG still won’t allow anything until JCVI advises (even with Consultants on our side). Please email a letter to JCVI too - the more people in our boat who do, the better.
(also CEV child here and will continue to shield.)

contact.org.uk/about-contact/news-and-views/write-to-jcvi-about-vaccines-for-clinically-vulnerable-children/

I have read the full thread, my series of messages weren't linked, sorry.
What I was trying to respond to in the OP was about the 'need' for greater precautions - this shouldn't really need to be more than families were taking to protect their child from winter respiratory viruses prior to the pandemic.

The point now though is that the numbers of people infected with covid is going to increase exponentially. The chances of coming into contact with the infection is going to increase hugely. The risk of illness to cev and vulnerable children may be similar to that of other viruses but covid is the virus that will be predominately circulating amongst the community now in very high numbers. Parents of cev children are already used to being cautious but this is now beyond their control until vaccines become available to offer some protection.

I've read some of the responses, including those that say people posting to say they understand has made a difference. So my tuppence worth - I totally understand, and am despairing of the government and those positively partying over the lifting of mask mandates. I've posted on 2 of those threads to try to change some minds, but otherwise feel very helpless (not CV, but vulnerable myself, with CV parents). It feels very wrong that simple, largely pain-free measures like masks and distancing are being misrepresented as an impingement on freedom, while those of you suffering a genuine, indefinite loss of freedom are entirely disregarded. Needless to say, I'll be fully masked as long as it takes - not a big deal to me, but could be to someone else.

It feels very wrong that simple, largely pain-free measures like masks and distancing are being misrepresented as an impingement on freedom

Yes, totally agree with this. There are all sort of rules, some arguably silly, some life-saving, that we follow every day (dress codes, speed limits, parking restrictions, queueing). I don't see why mask wearing is any different for most people, barring those with a specific medical need, tbh.

What did you do with your CEV children before Covid? Did you just live life or did you avoid places in flu season etc? Because whilst I appreciate Covid is not flu I don't see the risk in going to outdoor spaces, as reduced capacity has been the only real precaution there.
At worst let schools are finish for the summer give it week and get out there.

Anyway I think numbers are going to surge as soon as masks and distancing are removed, so we will be in lockdown by the autumn again anyway. This is all about appeasing people by giving them a few weeks mask-free to enjoy themselves.

What I am saying is that this isn't likely to be any greater with COVID than other viruses...How did you manage the risk prior to the pandemic?

Taking that question literally I have lots of thoughts on this. The first being how do you kknow it isnt any greater. The second being even if it isnt worse than other illness theres a wider community/societal context.

There really isn't the statistics out there. Most vulnerable children have been shielded. We still dont know the full impact of long covid on adults, let alone children, let alone vulnerable children. There isnt enough stats yet.

As to regular illnesses and how we managed before covid. DS has a flu jab, the Doctor offers the whole family the flu jab to minimise the impact on DS. DD cannot be vaccinated yet and there are no signs she will. DS has only just had his first vaccine, he wont get a reasonable level of protection for one-two months. Whilst the delta variant is rampant and many of the population are only single jabbed.

I used to pull DS put of school for a few days when Norovirus hit, usually to the weekend because that is long enough to break the transmission chains. Covid has a longer transmission and incubation period.

"Managed in the community" is a bit of a useless description. Ds has had many illness managed in the community, that could be anything from "take a day off school and rest" to "I've urgently sent this medicine to your nearest pharmacy can you send someone to pick it up now and I'll call you in 2 hours to check it works or see if we need to try something else. If he gets any worse or starts doing .... call an ambulance". We've had DS' doctor say "Its great you got him here but you call an ambulance next time just in case surgery is delayed and it's too late". That's listed as flu/heavy cold managed in the community. Parents of SN children are often remarkably resilient and capable out of need that isnt necessarily a reflection of risk.

Also most regular illnesses there is stuff you can give to either directly attack the illness or to support the body. With covid we have one treatment that helps to reduce the length of hospitalization. That's better than nothing, but worse than most illnesses.

Finally The Nice guidelines introduced April ish time last year mean that adults and children like DS are deprioritised for care. That means in a situation we care needs to be rationed, DS wont be admitted into hospital and he will be "treated" at home. Covid, indeed any regular illness, has therefore never been as dangerous. Not only does DS need to stay well, he needs the rest of the population to stay well too so the NHS isnt put under too much strain. Thankfully that hasnt happened, but unchecked spread delta strain is a worry. A very small percentage of the whole population is still a large number. In normal times these nice guidelines didn't exist and the risk to health of the rest of the population was lower.

Numbers like 1 in 100,000 etc dont feel over reassuring if your childs diagnosis is something like 1 in 200000.weve already hit the wrong side of luck once!!!

It feels very wrong that simple, largely pain-free measures like masks and distancing are being misrepresented as an impingement on freedom

Yes this. Tbh I envy cultures (South Korea, Japan etc) where mask wearing on public transport or if you have a cold is the normal. It may not eradicate risk but reducing it can make a difference. Our country's attitude to this is all wrong. I can well see us mask wearing on public transport and busy areas in normal times.

@areoplanecakerake

What did you do with your CEV children before Covid? Did you just live life or did you avoid places in flu season etc? Because whilst I appreciate Covid is not flu I don't see the risk in going to outdoor spaces, as reduced capacity has been the only real precaution there. At worst let schools are finish for the summer give it week and get out there.

Our children are vaccinated against flu and in some cases other viruses that aren't part of the routine vaccine scheme. Most viruses have known treatment and anti virals as well. We still do end up in hospital regularly in winter however this doesn't impact on the siblings who can continue to attend school etc whereas covid does also impact on the sibling. We would have removed the child from school if there was a flu outbreak within the school (flu outbreaks in schools are notifiable and dealt with by public health) but flu outbreaks are rare in schools, covid outbreaks are not. Outside areas are still crammed with people and now they will be full of children who no longer have to isolate as a positive contact. You really can't keep any distance between young children in play parks etc either. We will still go for walks outdoors but that will be pretty much the limit of what we can do

I completely feel for you, I'm CEV and think that those who are CEV and their families are yet again overlooked, I'm fed up of a useless government, and fed up of all the poster who are "done with social distancing and masks" throughout this pandemic I've realised how totally selfish people really are.

Yup, to Motherofalittledragon.

People's attempts to rationalise mask-wearing with ref. to the arguments above on the major "Hooray!" (or whatever is was) thread seem to be met with a few really reasoned, thoughtful contributions - and a lot of depressingly predictable responses (reading it feels like playing bingo!) and sniping.

I do find it striking is that those celebrating total mask removal on public transport really seem to struggle to put forward convincing arguments for it much beyond "Because I want to!" in one form or another. When I joined the thread, I was kind of hoping to help others who'd tried before me to put across our perspective and maybe, just maybe, to get into a good ol' debate and change a few minds; I was also honestly hoping that they'd help me see their point of view - I'm a bit entrenched in mine, and want to prepare myself to empathise more with the non-mask-wearers now they'll be all around, as I currently find myself getting irritated, and that's really unhealthy and a bit unfair when I don't know their reasons...

But, instead, there was such sustained reliance on personal attacks / straw man hyperbole / misleading data that, honestly, to my mind, the replies just reinforced my views (sometimes quite literally - unthinking old chestnuts like NHS waiting lists were presented as evidence for "freedom day mask removal", when surely - surely! - they can only, rationally, be an argument for wearing masks a bit longer!... I'm still troubling myself over that one; tell me if I missed something!) It was kind of embarrassing, tbh, and definitely depressing, and, honestly, really does add up to expose selfishness as the main driver of the belief, whether this manifests as "It's so uncomfy, I've already done it for ages, and a few people faint on the tube, or "It's my right not to!" It would be a little scary - if we hadn't already seen it so much.

And the government know what people are like, know most will react this way, and know they're welcoming unnecessary deaths and long-term disability and imprisoning a proportion of their populace in their homes indefinitely.

Yet they support this inexplicably wholesale approach (inexplicable as herd immunity has, as I understand it been largely debunked, suggesting it's not justified by that, and as so many other countries, including those with demographics and population density not entirely unlike our own, are in such a starkly different position to us numbers-and policy-wise, there's ample evidence that we needn't be in this state, and certainly not responding to it in the way we are).

And then to present their argument in ideological, black and white, now or never, "freedom day" rhetoric that forcefully justifies the perception of masks as somehow oppressive, and ignores the irony of the locked-down shielders' lives, is utterly disingenuous, actively discourages the taking of "personal responsibility" they trumpet, and sets them up for predictable difficulties if/when they need to reintroduce masks.

There's an excellent article in the Guardian on their abnegation of their responsibility to maintain collective protections to protect the weak, vulnerable and voiceless in the populace (I've honestly found myself wondering if there's a legal defence here; surely any democratic government is elected to, above all else, protect life and liberty?!) And Jacinda Arden says it all in a recent speech.

It's an appalling approach to take, absolutely appalling. I never thought it could get this bad.

This is outrageous that vulnerable children haven't been considered, their care team should be able to advise and offer vaccinations before restrictions are abandoned... Especially the social distancing and non masks

@Odisia

I honestly feel like we have most of our freedom back already. I can go to pubs, restaurants, on holiday, to shops, museums etc. I'd be happy to continue wearing masks indoors and on public transport for longer if it protected the vulnerable. I'm vaccinated, and not particularly high risk, yet it makes me nervous. I can't imagine the anxiety and disappointment you must be feeling.

I think there may be many other people who agree with me. I hope so.

I feel the same, life is very different from lockdown and most things are open again.

I don't understand the government dropping the mask wearing policy. It's low cost and it isn't difficult to do, I understand they are annoying and I do struggle with them, but they help protect people and they help keep everything open by suppressing infection rates. It seems ideological to appease the anti-lockdown Conservative MPs. I don't understand the all or nothing attitude. They are betting completely on vaccination alone and it is reckless as Delta may need 80% herd immunity, and 20% of the population is under 18, so you would need to vaccinate every single adult to get there and that isn't realistic. They haven't waited for everyone under 18 to get their second vaccine plus two weeks to gain immunity either, so that is more risky.

I'm going to keep wearing mine. I really feel for anyone who is CEV or has CEV children. It does feel like they aren't being considered at all. My children aren't CEV and I'm slightly worried for them, as we are vaccinated and they can't be and we are in a high risk area with rising numbers, it is going to explode here after 19th July. The risks are very low for them, but on a population level, there will still be children who will suffer the post-inflammatory syndrome. I can't imagine how it feels if your child is CEV.

It really is appalling that vulnerable children are being treated like this. What choice do you have than to shield and protect them as best you can?

I will be wearing my mask still - it really isn't difficult to do and could protect someone.

It feels very wrong that simple, largely pain-free measures like masks and distancing are being misrepresented as an impingement on freedom

I agree.

@MarthaPent

It feels very wrong that simple, largely pain-free measures like masks and distancing are being misrepresented as an impingement on freedom

I agree.

Me too

I'll also be continuing with mask wearing. I dislike them but with cases rising and no other measures staying, I'll carry. I've signed this petition too www.change.org/p/uk-government-keep-legal-requirement-to-wear-a-face-covering-in-shops-supermarkets-etc-after-july-19th?recruiter=1093880277&utm_source=share_petition&utm_medium=email&utm_campaign=psf_combo_share_initial&utm_term=cc2ec5fcfff44651a4989f1e3864f15f&recruited_by_id=026ea9d0-9f48-11ea-b1f7-fbf2e50800d2

@Temp023 entirely your call - as it is mine to refuse it for my children

I have no advice but lots of sympathy. It's an awful situation to be in.

I am nervous about the summer and autumn and I don't have a CEV child. You have my utmost sympathy. I will be being very cautious this summer, much more so now that cases are rising. I will be avoiding indoor spaces (as soon as I break up from work in a school) and continuing to mask and distance. My big hope is that the worst is over with during the summer when no one has to be in school. I am planning a quiet summer with maybe a few small garden meet ups and some nice walks with family. That's about it. I keep telling myself that this has to end sometime and am hoping this might be the final big wave. I really hope vaccines are made available to CEV teens and children soon. I am so sorry that our appalling government have abandoned you completely. Trust your own instincts and stick with what you feel comfortable with.

I don't have any CEV children but you have my complete sympathy and support. My family and I will continue to wear masks and social distance. I am pinning my hopes on the fact that Johnson is the king of u-turns and that he will cancel this ridiculous "freedom day".

Johnson won't cancel.

They are having a massive experiment to have a summer wave in the hope of averting a winter one.

I suspect they are a little nervous right now, because the wave is bigger than expected, but not enough to call it off.

The CEV have never mattered much (remember they weren't originally going to be priority vaccinated as not enough were dying - because of shielding you numpties!) and from the off Boris has said that done will die. If your CEV condition does not affect your immune system, there's a reasonable chance you'll be OK.

If you are CEV and have immune problems, well you're stuffed now. Long term isolation - the rest of the population is fed up of even the light restrictions currently in force (which gave a bit of freedom to the very vulnerable) and its intolerable to live like that, and will have grave MH consequences. But either they don't see or they don't care that the price tag for them doing even more is that the vulnerable carry that burden alone instead.

If you are CEV and have immune problems, well you're stuffed now.
Certainly feels that way nether :(

For anyone who hasn't seen on the news, there is an update about this today.

Hope it helps some of your children.