‘The bottom fell out of our world’ – coping with childhood cancer in a cost of living crisis
When Emma’s three-year-old son was diagnosed with a brain tumour, money was the last thing on her mind.
With the tumour wrapped around his optic nerve – meaning it can never be removed – the kind and sociable toddler will need treatment on and off for the next 18 years of his life.
“The bottom just fell out of our world, we thought we were never going to be happy again,” she told Sky News.
After 18 months of gruelling chemotherapy, the family now face the stark reality of coping with Seb’s cancer amid a rising cost of living and an ever-diminishing household income.
“Initially you think the diagnosis is horrendous emotionally but then it hits you, financially how do we make this work?” Emma Grimwood-Bird said.
Seb, with mum Emma
The cost of cancer in children
Charity Young Lives Vs Cancer estimates cancer in children and young people costs families an extra £730 a month.
Seb is fed using a feeding tube but is allergic to the hospital’s feed solution, so the family have to buy him high-calorie food that is easily blendable.
“I noticed the other day that something that used to cost me £8 – a cream and salmon thing – has gone up to £9.95,” Emma said.
“We probably spend an extra £30 or £40 a week on what he needs.
“For the first time, I am having to take things out of the basket and accommodate the rest of us around his nutritional needs.
“Which we are happy to do but it’s not something we have ever had to do before.”
‘How are we going to manage?’
The family also face a £300-a-month increase on their mortgage come January, as well as an electricity bill that has almost doubled, rising from £120 to £217.
“We know our mortgage is going up, but when we get to January we are not sure how it’s going to play out. I think we’re just putting our heads in the sand and saying, ‘We’ll manage, we’ll manage’.
“But now it’s getting to the point where we are thinking, how are we going to manage?”
While Seb is stable at the moment, she said the “fear is always there” that he may get sicker, and either she or her husband will have to leave their job to care for him.
Emma has already used up her allotted sick pay, meaning any additional time off is unpaid.
Seb, with his family – including his younger brother Will
“I thought there would be some sort of support if you can no longer work if your child is sick. But there is no protection at all.
“We have really tried to keep our employers on side, but there is only so far they will go. “
They get £300-a-month disability living allowance, which just about covers the cost of the additional car they need to take Seb to his appointments – at a hospital an hour away.
“I never have I thought about I would be someone that would receive benefits ever,” she said.
“But we didn’t ask that for our son to get a brain tumour and as much as you are dealing with the emotional side of it, you have to have the financial conversations as well.”
Rachel Kirby-Rider, chief executive of Young Lives vs Cancer, said: “We are witnessing the worst cost of living crisis we have seen in recent memory, and the young cancer patients and families we support are having to deal with the uncontrollable costs of cancer alongside the fear a cancer diagnosis brings.
“They are left having to make impossible choices, deciding between putting the heating on to keep their child warm or paying for petrol to get to hospital for treatment; getting the food their child desperately craves while on chemotherapy or buying a warm coat.”
The charity has introduced a crisis fund, offering grants to families and young people in greatest need this winter, alongside offering emotional support.
Seb, with mum Emma, in hospital
Less than 100 cases a year
For Katherine Lichten, from Suffolk, it’s a familiar story.
Their “whole world was turned upside down” when three-year-old Teddy, feared initially to need surgery for appendicitis, was found to have a cancerous mass which had metastasised on his hips, spine and bone marrow.
Teddy’s cancer is rare – there are less than 100 cases a year in the UK and only 40% of those diagnosed survive five years.
The train-obsessed little boy – whose favourite thing to do is go to the local station and spot the engines – has now been isolated from his friends due to infection concerns.
Katherine said: “He’s very curious, he likes to know what’s going on, and he likes to ask the nurses what medication it is – you can’t get anything by him.”
Teddy, post diagnosis
Unable to return to work
Katherine was due to return to work in January at the end of her maternity leave for Teddy’s eight-month-old brother Rupert.
But because of Teddy’s cancer, she won’t be able to go back until this time next year.
“My only income is £140-a-month child benefit,” she said.
As their income goes down, their costs have gone up – including their mortgage, which is now up £200 a month.
“Our budget for food has stayed the same but every week we are getting less and less for our money,” she said.
Teddy, three, at the start of treatment
“It’s very difficult to do food shopping when you have got a child who is seriously ill.”
Teddy also requires multiple hospital visits, which costs the family £12 a day on public transport, or £30 per journey if they need to take a more urgent taxi.
The family is fundraising for medical treatment abroad, hoping to get him specialised treatment in the US.
But the weakening of the pound against the dollar means they need to raise even more to be successful.
Teddy with mum Katherine, and younger brother Rupert
It’s Never You
The lack of support for parents of children with cancer is what spurred Ceri Menai-Davis to set up his charity, It’s Never You.
His six-year-old son, Hugh, died from a rare form of cancer in September last year.
He said parents are forced to rely heavily on charities – including his own, which has an app to provide advice for those “at the coalface”.
Currently, parents can claim universal credit (if they don’t have above a certain amount in savings or a job), disability living allowance, carers allowance and 18 weeks unpaid leave taken in four-week chunks across the year.
Hugh inspired his parents to set up a charity to give support to parents
“You are constantly fighting against this waterfall,” he said.
“I’m now the other side of it – the sad side of it – but the stress of it, and then having no money on top.
“Having been there, I know the cost of everything and what you want to do for your child.
“The three things we have to do to look after our child is to feed them, heat them and take them to hospital. And those three key elements have gone up in price by at least 20%. And for some parents, there is no support, so it’s adding an extra burden to an already awful time.”
Ramesh lives in fear every day. A police siren is enough to alarm him.
He’s one of up to 400,000 visa overstayers in the UK, one lawyer we spoke to believes.
It’s only an estimate because the Home Office has stopped collecting figures – which were unreliable in the first place.
Britain is being laughed at, one man told us, “because they know it’s a soft country”.
‘Ramesh’ came to the UK from India
We meet Ramesh (not his real name) at a Gurdwara, a Sikh place of worship, where he goes for food and support.
He insists he can’t return to India where he claims he was involved in political activism.
Ramesh says he came to the UK on a student visa in 2023, but it was cancelled when he failed to continue his studies after being involved in a serious accident.
He tells us he is doing cash-in-hand work for people who he knows through the community where he is living and is currently working on a house extension where he gets paid as little as £50 for nine hours labouring.
“It’s very difficult for me to live in the UK without my Indian or Pakistani community – also because there are a lot of Pakistani people who give me work in their houses for cleaning and for household things,” he adds.
‘What will become of people like us?’
Anike has lived in limbo for 12 years.
Now living in Greater Manchester, she came to the UK from Nigeria when her sister Esther was diagnosed with a brain tumour – she had a multi-entry visa but was supposed to leave after three months.
Esther had serious complications from brain surgery and says she is reliant on her sister for care.
Immigration officials are in touch with her because she has to digitally sign in every month.
Anike has had seven failed applications for leave to remain on compassionate grounds refused but is now desperate to have her status settled – afraid of the shifting public mood over migration.
“Everybody is thinking ‘what will become of people like us?'” she adds.
‘It’s a shambles’
The government can’t say with any degree of accuracy how many visa overstayers there are in Britain – no data has been collated for five-and-a-half years.
But piecing together multiple accounts from community leaders and lawyers the picture we’ve built is stark.
Immigration lawyer Harjap Singh Bhangal told us he believed there could be several hundred thousand visa overstayers currently in Britain.
He says: “At this time, there’s definitely in excess of about 200,000 people overstaying in the UK. It might even be closer to 300,000, it could even be 400,000.”
Asked what evidence he has for this he replies: “Every day I see at least one overstayer, any immigration lawyers like me see overstayers and that is the bulk of the work for immigration lawyers.
“The Home Office doesn’t have any accurate data because we don’t have exit controls. It’s a shambles. It’s an institution where every wall in the building is cracked.”
The number of those who are overstaying visas and working cash in hand is also virtually impossible to measure.
‘They know Britain is a soft country’
“They’re laughing at us because they know Britain is a soft country, where you won’t be picked up easily,” says the local man we’ve arranged to meet as part of our investigation.
We’re in Kingsbury in northwest London – an area which people say has been transformed over the past five years as post-Brexit visa opportunities opened up for people coming from South Asia.
‘Mini-Mumbai’
The man we’re talking to lives in the community and helps with events here. He doesn’t want to be identified but raises serious questions about visa abuse.
“Since the last five years, a huge amount of people have come in this country on this visiting visa, and they come with one thing in mind – to overstay and work in cash,” he says.
“This area is easy to live in because they know they can survive. It looks like as if you are walking through mini-Mumbai.”
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‘The system is more than broken’
‘It’s taxpayers who are paying’
And he claims economic migrants are regularly arriving – who’ve paid strangers to pretend they’re a friend or relative in order to obtain a visitor visa to get to Britain.
He says: “I’ve come across so many people who have come this way into this country. It’s widespread. When I talk to these people, they literally tell me, ‘Oh, someone is coming tomorrow, day after tomorrow, someone is coming’.
“Because they’re hidden they may not be claiming benefits, but they can access emergency healthcare and their children can go to school.
“And who is paying for it? It’s the taxpayers who are paying for all this,” says the man we’ve met in north London.
Read more from Sky News:
Net migration figures hit four-year low
How Denmark may inspire UK asylum reforms
A Home Office spokesperson said: “We will not tolerate any abuse of our immigration system and anyone found to be breaking the rules will be liable to have enforcement action taken against them.
“In the first year of this government, we have returned 35,000 people with no right to be here – a 13% rise compared to the previous year.
“Arrests and raids for illegal working have soared to their highest levels since records began, up 63% and 51%.”
The government can’t say with accuracy how many visa overstayers there are in Britain – no data has been collated for five-and-a-half years.
Sky News has spoken to immigration lawyers about the numbers, and one believes there could be as many as 400,000 living across the country.
Harjap Singh Bhangal described the situation as a “shambles”.
“The Home Office doesn’t have any accurate data because we don’t have exit controls. It’s a shambles. It’s an institution where every wall in the building is cracked,” he told Sky’s Lisa Holland.
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The visa overstayers in ‘soft’ Britain
Why doesn’t the government know?
The Home Office used to gather data on visa overstayers by effectively checking a list of passport numbers associated with visas against a list of passport numbers of people leaving the UK, taken from airlines and other international travel providers.
If there was a passport number match in the arrivals and departures part of their database, that person was recorded to have left when they should have. If there wasn’t, they were a potential overstayer.
They stopped producing the figures because a combination of Brexit and COVID added complications that made the Home Office conclude they wouldn’t be able to get to a reliable number using the same method.
It’s now four and a half years since EU citizens had freedom of movement to the UK revoked, and more than three and a half years since pandemic-era travel restrictions ended.
And yet we are still waiting to see what a new method might look like.
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The old method wasn’t perfect. If someone changed their passport while in the UK, for example, or if the airline or individual entered the number wrong when they were leaving, there wouldn’t be a match.
The Home Office regarded the statistics as likely overestimating the true number of overstayers, and the Office for National Statistics designated the figures as “experimental” rather than “official” statistics, meaning the conclusions should be treated with caution. But they were a reasonable best guess.
With all that in mind, between April 2016 and March 2020 upwards of 250,000 people were flagged as potential overstayers, equivalent to 63,000 per year.
That’s more than the 190,000 people who are recorded to have arrived in the UK on small boats since 2018.
It represents 3.5% of the seven million visas that expired over that period, so at least 96.5% of people left when they should.
Other Home Office data reveals that more than 13 million visas were issued between 2020 and the end of June 2025, including a record 3.4 million in 2023.
But what we don’t know is how many have expired, which means it’s difficult for us to even guess how many people might have overstayed.
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