' It feels terrifying. Worst case scenario, my daughter could die of Covid.'
Loving mum Michelle Atkins was relieved the day her 10-year-old daughter, who has quadriplegic cerebral palsy, finally got her first dose of the coronavirus vaccine.
Shielding almost completely since March 14, 2020 to protect little Jessica, who fell into the clinically extremely vulnerable category, the family felt that, at last, they could begin to reclaim their lives after secured her first jab.
That was until Prime Minister Boris Johnson, this week, confirmed that the government would be relaxing its coronavirus restrictions imminently.
Among them is a major reduction in free testing in the coming weeks and the end of isolation rules for those who test positive today.
Now, Michelle's family are 'terrified' of life-threatening consequences as their at-risk little ones face a world where people may not know if they have coronavirus, and will not have to isolate if they do.
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'It was devastation'
'Alone', 'forgotten', 'like aliens from a different planet'. Parents of children who have been classed as clinically extremely vulnerable though the pandemic say they were left reeling after Boris Johnson's announcement on Monday that the country would move to a 'living safely with Covid' plan.
That plan includes self-isolation support payments which ended yesterday, along with routine contact tracing, meaning fully vaccinated adults and those under 18 who are close contacts are no longer advised to test daily for a week.
The legal requirement for close contacts who are not fully vaccinated to self-isolate is also being scrapped.
Introducing the measures in the House of Commons, the Prime Minister said: “Covid will not suddenly disappear, so those who would wait for a total end to this war before lifting the remaining regulations would be restricting the liberties of the British people for a long time to come.
“This Government does not believe that that is right or necessary. Restrictions take a heavy toll on our economy, our society, our mental wellbeing and the life chances of our children, and we do not need to pay that cost any longer.”
A heavy toll on the life chances of which children? Ask the parents of medically vulnerable little ones, who say the risk to their children's lives has shot back up in the wake of this announcement.
Most horrifying for vulnerable families, they say, is the end of the mandated five-day isolation period for those who test positive for Covid yesterday; and free mass testing halting on April 1.
It comes as gut-punch to those who have just started to reintroduce their children to the world.
“When we heard the announcement, it was devastation to be honest," Michelle, from St Helens, tells the Manchester Evening News .
"Jessica just got her first vaccine and as soon as that happened, and as soon as we were finally able to get our life back to some kind of normality, it now feels more difficult and like it might not happen.
“It’s bad enough if another child came to school with Covid-19 and then had to isolate, now they could be spending days together without even knowing if they are positive because of the changes to testing.
“I don’t know how it’s going to be possible for Jessica to go back to full time education, even though we want her to. She’s not the girl she was - she’s bored at home, she misses her friends, she jumps when she hears the doorbell.
“Worst case scenario, my daughter could die of Covid-19."
Greater Manchester boroughs among most at risk areas in England
The Prime Minister's 'living with Covid' plan comes as a number of boroughs in Greater Manchester are revealed to have among the country's highest numbers of clinically extremely vulnerable (CEV) people, at high risk of death from Covid.
Around 23,875 people in Bolton were recorded as CEV at the end of September - that’s about 8.3 per cent of its population, according to Office for National Statistics estimates – the tenth-highest proportion of more than 300 areas in England.
The figure stood at 7.1 per cent in both Oldham and Tameside, and 7.0 per cent in Bury.
Across Greater Manchester as a whole, 192,630 were identified as being more vulnerable – 6.8 per cent of the region's population.
The figures come from NHS Digital’s shielded patient list, which was compiled to support those who needed to shield in the earlier stages of the pandemic due to being at greater risk of serious illness or death from Covid.
The shielding programme ended in mid-September, with ministers saying that vaccine uptake and drug treatments meant the most vulnerable would no longer be advised to stay behind closed doors.
However, some of those previously considered extremely vulnerable are still deemed to be at high risk from Covid-19, according to the NHS.
Dr Chaand Nagpaul, who chairs the British Medical Association’s council, said the announcement 'neglects some of the most vulnerable people in society'.
He added: “We recognise the need, after two years of the pandemic, to begin thinking about how we adjust our lives to manage living alongside Covid-19.
"But as the BMA has persistently said the decision to bring forward the removal of all protective measures while cases, deaths and the number of people seriously ill remain so high is premature.
“Living with Covid-19 must not mean ignoring the virus altogether – which in many respects the Government’s plan in England seems to do.”
'Relying on people who won't know if they have Covid'
In Tameside, one of the boroughs in England that still has a relatively high proportion of more vulnerable people as the government axes the final restrictions, another family watches the Prime Minister's announcements in disbelief.
“I was surprised that restrictions are ending as abruptly as they are," Sarah Kay tells the M.E.N.
"I understand that there needs to be some sense of returning to normality and that Covid is here to stay, but to me, the idea that people who are knowingly Covid positive will not be isolating - that doesn’t make sense to me.
“It’s a concern because we have limited what we have done for two years. We were shielding for 12 months of that.
“Lots of families like ours have felt forgotten about all the way through the pandemic, it still feels like that."
Sarah is mum to six-year-old Heidi, who has complex needs and a tracheostomy, due to Hypoxic-Ischaemic Encephalopathy, where there is a lack of oxygen and blood flow to the brain.
The little girl has had to stay home from school, and the family has been forced to go without family and friends for two years.
“At first everybody was in the same boat, shielding for a couple of weeks and months. But because of Heidi’s medical needs, we had to continue to isolate and were restricted to being in the house.
“You adapt and make the best of things but, again, when you see things change - it’s a sense of normality for lots of people, which has a great impact on mental health, but then it’s not as easy for families like ours with medical extras.
“You’re relying on people taking their own precautions, and if people aren’t testing or tests aren’t readily available, people won’t know they have Covid and it’s a worry. All these children like Heidi can be really different in terms of what makes them poorly."
'We’re now living in jeopardy again'
Now, parents who were holding on to quiet hopes that they would be able to return to a more regular family life are trying not to despair.
“Jessica’s neurologist at Alder Hey Hospital said she would be at great risk from the very start of the pandemic," explains Michelle. "As a parent you say ‘that’s not going to happen’.
“Anything that comes through the front door gets wiped down and is quarantined to this day. I don’t want to lose my little girl to something that can be avoided.
" My husband works from home and never goes anywhere to keep us all safe, I work part-time but it’s transformed into full time caring, without any respite, because Jessica hasn’t been able to go to school.
“She’s already likely to have a shortened life. One fifth of that life could be gone, with two years of it having been spent staying at home."
Locally, health chiefs are advising residents to be take care of those who may be more vulnerable.
Lynn Donkin, Assistant Director of Public Health at Bolton Council, said: “While legal Covid have restrictions have been lifted, the virus has not gone away and many vulnerable people in our community remain at risk.
“Government advice on Covid-safe behaviour is still in place, and these are the steps we can all take to help keep everyone safe.
“Getting vaccinated, keeping rooms well ventilated, washing hands regularly, wearing a face covering in crowded areas, staying home if you are unwell and getting tested if you have Covid-19 symptoms – these will all help make a difference.”
Nationally, Department of Health spokespeople are pushing the vaccine: “We recognise the importance of ensuring people who continue to be at higher risk from Covid-19 receive the right advice and interventions.
"This may be particularly important for those whose immune system means that they are at higher risk.
“Vaccines are the best way we can protect ourselves from the virus and we continue to urge all those eligible to get boosted now.”
As part of the changes, an additional booster will be offered to all adults aged over 75, older care home residents, and over-12s with weakened immune systems.
But in the wake of what feel like sweeping changes to measures they hoped would keep their youngsters safe, advice from the top now comes as little comfort to these families.
Some are wracked with anger, including the Stone family, from Moston. Their story is familiar to many who have CEV loved ones as they have patiently waited in their homes, sacrificing their hobbies, for daughter Helaina.
The 27-year-old has Costello Syndrome, a rare genetic condition that affects the heart, muscles, bones, skin, brain, and spinal cord.
Helaina has battled cancer twice, as well as surviving a myriad of heart and brain surgeries through her life.
The young woman had just started a new job at the Royal Manchester's Children's Hospital, where she was providing comfort and advice to nervous patients, when the pandemic hit.
“We’ve been unable to go out and do anything we enjoy, which involves being around people, for almost two years, because we don’t know if Helaina would survive Covid," explained dad Colin Stone.
“Even though we’ve all been vaccinated, if we get Covid, we’ve got serious problems.
“Who can afford to pay £10 for a single test? If that’s what testing will cost from now on, people aren’t going to do it."
“I’m absolutely disgusted - and I worry about all the parents who have special needs themselves, as well as special needs children, who find all this even more difficult," added mum Cath.
"They’re even more forgotten about, and it’s their kids who die.”
Thrust back into limbo, the monotonous routine of life in self-imposed lockdown to save an at-risk child continues for these families.
“We’re now living in jeopardy again," sighs Michelle Atkins.
"I feel a bit like an alien from a different planet, because I can’t quite believe it’s happening . I don’t feel we’re ready for this."
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