How are families with clinically extremely vulnerable (CEV) children coping through lockdown, shielding, the end of shielding and getting access to a Covid vaccine? For many families with children with neurological injuries, this has been the toughest year ever, and for many the end is not in sight.  They are still living with the constant worry of the devastating, or even fatal consequences, that catching Covid-19 may have on their child now that shielding has ended and currently the Covid vaccine is off licence for CEV children under 12 years of age.

We asked Michelle Atkins, mum to Jessica, who has a complex neurological injury, to explain her concerns about the end of shielding for clinically extremely vulnerable (CEV) children, their road map out of lockdown and access to Covid vaccines for CEV children.

How did you get involved in raising awareness of the impact of Covid on CEV children and their families?

I initially started to follow the charity ‘Contact’ on twitter. They are a charity that specialise in helping the families of disabled children. During lockdown they have been launching surveys into the impact of Covid-19 as well as raising the issues highlighted with the Government. They have been the voice for families like ours. I was approached by Contact after completing one of the surveys to see if I would speak to a journalist from the BBC about the impact of Covid on our family and how we were feeling about the end of shielding and access to a vaccine for Jessica. This aired on 15th March 2021.

Subsequently I was approached by Contact to speak on a MS Teams call with the House of Lords Covid Committee (22nd April). This committee was set up in June last year to investigate long term social and economic implications of Covid 19.

How did you feel about the end of “shielding” on the 31st March 2021, for Jessica and other clinically vulnerable children?

The end of shielding felt incredibly dangerous to us, as Jessica has no access to a vaccine.  The guidance for adults that have been shielding is now to work from home, if possible; to limit contact; and ensure social distancing. Jessica would be unable to do any of these things if she went back to her mainstream primary school. How can this possibly be safe for a CEV child with no protection from a vaccine? Protecting Jessica and keeping her safe is our main priority.

What guidance do you and other families with clinically vulnerable children have about a way out of lockdown?

There is no guidance specifically for CEV children. All children are now expected to be back in school and we are still trying to work with our medics and school, as we believe it’s simply not safe for Jessica to return.

Jessica needs close care from her 1:1 teaching assistant and is in a bubble with almost 30 children in her class (the majority of whom have siblings in other classes or other schools) with no social distancing. In primary schools, the lateral flow testing is recommended for parents, but it isn’t mandatory, so we have no idea if her peers are actually being tested.

We finally managed to get a Neurologist appointment this week via video link, and he agreed with all our concerns regarding Jessica’s vulnerability and our concerns about sending her back to school.

Is Jessica currently eligible for any of the Covid-19 vaccines?

No, there are currently no vaccines available for Jessica. The vaccine is only available for clinically extremely vulnerable children over 12 years of age, and Jessica is only 9.

Trials in children are currently taking place but we have no idea what stage these are at, and if, or when, they may be approved.

We would welcome the chance to be able to discuss the viability of Jessica having the vaccine off licence as many medications that she takes, or has taken, are not licenced for use in children. She started on off licenced medications at 11 weeks old, and she has had serious reactions to licenced medication, which is why she is on one of her off licence medications.

If not, has anyone been able to give you a clearer picture as to when Jessica may be eligible?

There is currently no guidance on when clinically extremely vulnerable children under 12 years of age will be able to have a vaccine.  August has been suggested in some media reports but there is nothing concrete until the results of the trials are known.

This could mean that Jessica misses 18 months of school. If, indeed, we manage to keep her school place open. As there is no shielding now, and the pressure is on for her to return to school, it may become apparent that the only way that we can legally keep her at home, is to remove her from school, and home school until she’s safe. We are hoping that the neurologist’s report means that this doesn’t happen, but if it does, then there is no guarantee we will be able to get her back into the same school, or indeed into mainstream education at all.

What do you think is the way out of lockdown/shielding for Jessica?

Even though the cases of Covid are far lower currently, we feel that the only way for us as a family to begin to emerge from lockdown, is for Jessica to have a vaccine.

Lateral flow testing of her peers isn’t mandatory and many children her age are asymptomatic. It is therefore impossible to fully assess the risk to Jessica in school.

We feel that continuing to shield Jessica, and indeed ourselves, is the only way we can protect our fantastically amazing and beautiful little girl until a vaccine is available for her.

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