‘Don’t call us ghost children’: The vulnerable families who fear school return

Push to get children back to the classroom leaves families with severe health conditions feeling their needs are not being met

Push to get children back to the classroom leaves families with severe health conditions feeling their needs are not being met


Vulnerable families who fear sending their children back into the classroom have railed against the label of “ghost kids”, saying they are instead “being ghosted”.

Schools Week has spoken to six families in which parents or siblings of pupils have health conditions that mean catching Covid could be fatal.

Their stories reveal how a sharp shift in government policy to all children returning to the classroom – despite Covid still raging – has left families with severe health conditions feeling their needs are not being met.

Some claim they were “quietly encouraged” or felt they had no option but to remove their child from school to be educated at home – or risk a heavy fine.

Latest figures show 1.6 million pupils were still persistently absent last year, with Robert Halfon, the former education select committee chair, describing the pupils who have left school rolls as “ghost children”.

So who are they and why are they not in school? Schools Week investigates…

‘We’re punishing families who have suffered enough’

Lizzy* was anxious about sending her nine-year-old daughter back to school in September 2020 as coronavirus cases began to rise. If she caught the virus, it could leave her without a mother.

Lizzy was one of 2.2 million people told to shield in the first lockdown and classed as “clinically extremely vulnerable”. She was diagnosed with blood cancer in 2019.

Following the first lockdown, Lizzy requested that nine-year-old Claire* learn at home instead, a request her school supported. It was classed as authorised leave.

Yet two months later, the school put pressure on Claire to return. Fast-forward to January this year, and the family felt like they had no choice but to de-register Claire from the school roll and move to home education.

“It’s illogical and it’s cruel and I cannot for the life of me understand how we’ve ended up in this situation,” Lizzy said. “We are rewarding sick children for coming into school, and punishing families who have suffered enough from all their illnesses.”

Dr Lee-Anne Kohli’s two sons have been home-educated since autumn 2020 as her son Peter* has a heart arrhythmia and is designated as clinically extremely vulnerable. This has cost the family more than £5,000 in private tuition.

She claims Harris Church of England Academy, in Warwickshire, suggested she de-register Peter from the school roll or face a fine.

Lee-Anne took Peter, 15, off the roll that month, telling the school it was “primarily due to the advice of his paediatric cardiologist”.

A school spokesperson said it took a “compassionate approach” to support pupils returning from long-term absence and had a legal obligation to follow government attendance policies.

Ghost children label is ‘quite offensive’

Lana Collie-James, 16, has only attended school for a few weeks since September 2020 as her mum Anna has the lung condition hypersensitivity pneumonitis, for which she has to take immunosuppressants.

Lana taught herself for her GCSEs and is doing an extra year at college to catch up.

ghost children
Anna and Lana

“It’s a huge stress on both of us, it has been horrific,” said Anna. “I think the term ghost kids is quite offensive. They are not ghosts, they know the reasons why most of these children aren’t there and it can be addressed easily.”

Stacy Langford has spent thousands on her daughter Olivia’s home tuition as she claims little work was sent home to her over the past two years from Midfield Primary School, in Bromley, Kent.

Zhoe, her youngest daughter, has tetralogy of Fallot, a congenital heart defect that impacts her lungs.

“It’s a really unfair situation to be put in when we are going through the worst time of our lives,” she said.

Lara Wong, the founder of the Clinically Vulnerable Families group, said it was “outraged more attention is given in schools to headlice than to Covid, although it continues to pose a serious threat to the lives and health of our members”.

“Our children are not ‘ghosts’ but our families do face a real risk of death; we find this terminology highly distasteful.”

Attendance shift put schools in tough position

Heads have discretion to authorise absence in “exceptional circumstances”. After a legal challenge in 2020, ministers said this could cover families that kept their children at home out of fear for their own health.

But the tone changed last year, when Nadhim Zahawi, then education secretary, made cracking down on school absence one of his top priorities.

His stance caused widening cracks between schools and vulnerable families, with no clear guidance on authorising absences for those who just months earlier had been told they must stay at home.

Tim Marston, a headteacher in Leicester, said: “Throughout the pandemic we were grateful for the way parents dealt with symptoms and kept children off school, but now it’s the polar opposite.

ghost children
Stacy and Olivia Langford

“It’s hard to be cross and ask them to flip their expectations on attendance in a 12-month period.”

Anna said the family faced a “constant battle” to get work from Glenmoor Academy, part of United Learning trust in Dorset, and were fined £60 for non-attendance.

But a trust spokesperson told Schools Week it followed government guidance “at all times”.

Stacy claims that in March Bromley Council went as far as “requesting I take her [Olivia] in for an hour a day so it would appear on the register”.

A spokesperson for Springfield Partnership Trust, which runs Midfield, said it worked “collaboratively with the whole family, we involve many different agencies including health professionals”.

The council said it would become involved if there was a dispute between families and could “broker a situation that breaks down some of the anxieties that might be preventing a child from attending”.

Schools ‘pressured to increase attendance’

Wong claimed that as schools and councils have been “pressured to increase attendance” some have “quietly encouraged parents to remove children from school rolls”.

A survey of 225 families in the support group found 56 per cent had been told to consider withdrawing their child from school. Eighteen per cent did so.

Mark McDonald, a human rights barrister from Furnival Chambers, is representing six vulnerable families who are facing prosecution over non-attendance.

Two cases were unsuccessful with four ongoing.

“What I found stark was the total lack of sympathy from the government, the local authority and courts when it comes to these cases,” he said.

Support groups and charities say other absent children include those with long Covid, as well as youngsters whose mental health worsened during the pandemic.

Dan Rosenberg, an education lawyer at Simpson Millar, suggested heads could have better used their authorised absence discretion.

“The sad thing will be all of those who fell out of the system who didn’t need to. They could have been kept on the roll and within the system while issues could have been worked out during the pandemic.”

But Geoff Barton, the general secretary of the Association of School and College Leaders, said “schools are very conscious of the issues they face” and worked “hard to implement a range of protective measures”.

Nearly double number of pupils persistently absent

Time-lagged Department for Education figures show 1.6 million pupils (23.5 per cent) were persistently absent across the autumn and spring terms in the past school year.

This equates to missing 10 per cent of lessons, or seven days a term. The figure compares with 13 per cent in the autumn of 2020.

More recent data from school management information system Arbor, shared with Schools Week, shows the number of pupils missing half their lessons at secondary school has more than doubled to 3.73 per cent, up from 1.68 per cent in 2019.

The study is based on the 1,500 schools that used its systems.

Meanwhile, the number of electively home-educated children rose by an estimated 34 per cent during 2020-21, according to an annual survey by the Association of Directors of Children’s Services (ADCS).

A separate University of Exeter study of nearly 300 parents found the lack of help for pupils missing school led to 7 per cent saying their children were no longer on the school roll.

Researcher Kerrie Lissack said parents wanted to “feel listened to and not blamed” during periods of non-attendance as opposed to “out of sight, out of mind”.

Meanwhile, the education charity School-Home Support takes referrals from schools to help pupils back into the classroom. Demand for support – such as meetings, phone calls or visits – has doubled over a year.

‘We need a strategy to ensure children are safe in school’

Ministers’ current work to improve attendance includes mentoring pilots and more advisers to help councils improve their support.

ghost children
de Souza

Rachel de Souza, the children’s commissioner, says a new live attendance dashboard – which thousands of schools now use – will help “the right actions be taken”. She also wants a “consistent unique identifier” to better track attendance.

Plans for a national register of children not in school forms part of the schools bill, whose future remains hazy.

But clinically vulnerable families say these policies won’t help them. They favour some type of hybrid access to education, HEPA filters in every classroom and long-term investment in ventilation.

A government spokesperson said school was “the best place for children to be and last year we provided 386,000 CO2 monitors to them and other settings, to help improve ventilation, alongside clear guidance”.

Schools should do risk assessments for all pupils and have “sensitive conversations with pupils and families about their needs…Off-rolling is illegal and fines for parents should only be used as a last resort.”

* Name changed

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  1. Someone please needs to look at what’s happenning to SEN children and their families. At schools not following proceedure, complaints to schools, LAs Ofsted and DfE not being addressed and there must be a lot of them. Howany complaints? Tbis really needs to be established and publisised. The damage the education system is doing to them and their families. Please see “not fine in school” and if allowed their fb page where you will find thousands of parents of struggling children being penalised when they already do their best to get their children into school but the schools are not giving the support they’re supposed too and parent blaming to avoid any accoubtability for their own failings and damaged being caused. Most kids with mental health difficulties are SEN and specialist places are not available. Schools are also refusing to apply for needs assessments and forcing parents to do this. LAs not following protocol or time scales and EHCPs not being fit for purpose. These children are a large proportion of the “ghost children”
    The government and councils and schools know exactly who they are and why they’re unable to access and why they’re being off roled on steroids or parents pushed to deregister to protect child’s wellbeing. Please, please, someone look into this properly and highlight the truth. There is blind eye happenning in our system and its not only destroying thousands of lives but creating a future mental health pandemic!