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.
Image: 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.
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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.
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“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.
Image: 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.
Image: 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.”
Image: 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.
Image: 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.
Image: 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.
Image: 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.”
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England’s 2003 Rugby World Cup winner Lewis Moody has been diagnosed with motor neurone disease.
The 47-year-old former England captain said it had been “incredibly hard to process and a huge shock to me and my family”.
In a social media post, he wrote: “I’m writing to share some tough news. I have recently been diagnosed with ALS, also known as Motor Neurone Disease (MND).”
He said: “I feel fit and well in myself and I’m focused on staying positive, living life and dealing with the changes I will experience as they come.
“I am being well supported by my family, friends and medical professionals and I’m truly grateful to those who, in their time, helped progress research to support others, like me, living with this disease.
Image: England’s Lewis Moody (R) tackles Robert Sidoli from Wales during a Rugby World Cup quarter-final in 2003. Pic: Reuters
Image: Lewis Moody, fourth from right in the middle row, poses with Queen Elizabeth II after winning the 2003 World Cup. Pic: Reuters
Since retiring from the sport in 2012, Moody and his wife, Annie, have dedicated much of their time to fundraising for The Lewis Moody Foundation, which supports those affected by brain tumours.
“My plan is to continue with this, but to also create an opportunity to support a charity closer to my current situation,” said Moody, who was awarded an MBE for services to rugby in 2004.
“I would be so grateful for your help with this and look forward to sharing more, once I am clear on what this looks like.”
Rugby players could be prone to motor neurone disease – but causes still unknown
Fellow rugby players Doddie Weir and Rob Burrow have died from the disease in recent years.
The sport – and in particular England skills coach Kevin Sinfield – have worked on high-profile fundraising campaigns to tackle it.
Athletes appear to be disproportionately likely to contract MND, which causes muscle weakness to the point it can eventually be hard to eat or breathe.
Image: Credit: Action Images / Paul Harding Livepic via Reuters
Research from Durham University found rugby players could be especially prone, as those who have suffered multiple concussions have higher levels of certain proteins in their blood that are linked to the disease.
“For now, please know I feel your love and support,” Moody added.
“All I ask is that I am given some space to navigate this with my wife and sons, and those closest to us – but without doubt, I will continue to embrace life and grasp opportunities in the same way I always have.”
What is motor neurone disease?
Motor neurone disease (MND) causes muscle weakness that gets worse over the course of months or years.
It’s usually life-shortening and there’s currently no cure, but treatments have been developmed to help manage the symptoms.
Initial symptoms can be: stiff or weak hands, weak legs and feet and twitches, spasms or muscle cramps.
They can worsen into problems breathing, swallowing and speaking, changes to personality and mood and being unable to walk or move.
It affects around one in 300 people.
A handful of studies have shown a correlation between professional sports to MND, but do not prove a cause.
A ‘glittering career’
Moody won 71 caps for England and also five for the British and Irish Lions, and was a seven-time title winner with Leicester.
He is perhaps best known for winning the final lineout during the 2003 World Cup final, which led to Jonny Wilkinson’s historic match-winning drop goal.
Lions Rugby Chair Ieuan Evans MBE said: “We are all greatly saddened to hear the news of Lewis Moody’s diagnosis.”
He added: “As a player, Lewis inspired so many fans during a glittering career.”
Moody joined Leicester Tigers from Oakham School and made 223 appearances between 1996 and 2010.
The club said everyone there was “deeply saddened to learn that one of our greatest players” had been diagnosed with MND.
“The figures, trophies and awards tell you what an incredible player Lewis was, but that is only half the story,” said Tigers chief executive Andrea Pinchen.
“As an individual, his commitment to his club along with his warmth and passion shone through, which endeared him to teammates, staff and supporters alike.”
A shake-up to the house-buying system which could cut a month off the time it takes – and slash around £700 from the moving bill – is on the table.
Changes could include requiring property sellers and estate agents to provide more information when a home is listed for sale, reducing the need for buyers to carry out searches and surveys.
Binding contracts could also be introduced at an earlier stage, reducing the risk of a chain collapsing.
The proposals could also deliver clearer information to consumers about estate agents and conveyancers, including their track record and expertise, along with new mandatory qualifications and a code of practice to drive up standards.
Housing Secretary Steve Reed said the proposals, which are the subject of a consultation, would help make “a simple dream, a simple reality”.
The government says it will set out a full roadmap in the new year after consulting on its proposals.
Image: Housing Secretary Steve Reed. Pic: PA
Mr Reed said: “Buying a home should be a dream, not a nightmare.
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“Our reforms will fix the broken system so hardworking people can focus on the next chapter of their lives.”
Officials believe the proposed package of reforms could cut around a month off the time it takes to buy a new home and save first-time buyers an average of £710.
People selling a home could face increased costs of around £310 due to the inclusion of upfront assessments and surveys.
Those in the middle of a chain would potentially gain a net saving of £400 as a result of the increased costs from selling being outweighed by lower buying expenses.
Wider use of online processes, including digital ID, could help make transactions smoother, the government argued, pointing to the Finnish digital real estate system which can see the process completed in around two weeks.
The consultation also draws on other jurisdictions, including the Scottish system where there is more upfront information and earlier binding contracts.
‘Process the same as for our grandparents’
The planned shake-up was welcomed by property websites and lenders.
Rightmove chief executive Johan Svanstrom said: “The home-moving process involves many fragmented parts, and there’s simply too much uncertainty and costs along the way.
Image: Looking for the perfect home on Rightmove. File pic: PA
“Speed, connected data and stakeholder simplicity should be key goals. We believe it’s important to listen to agents as the experts for what practical changes will be most effective, and we look forward to working with the government on this effort to improve the buying and selling process.”
Santander’s head of homes David Morris said: “At a time when technology has changed many processes in our lives, it is incredible that the process of buying a home – an activity that is a cornerstone of our economy – remains much the same for today’s buyers as it did for their grandparents.”
Conservative shadow housing minister Paul Holmes said that while Labour welcomed steps to digitise and speed up the process, the party risked “reinventing the last Labour government’s failed Home Information Packs – which reduced the number of homes put on sale, and duplicated costs across buyers and sellers”.
The Tories will pledge to make even further cuts to the foreign aid budget, as the party attempts to regain its reputation for fiscal responsibility in the wake of the Truss mini-budget.
Shadow chancellor Sir Mel Stride will unveil plans to cut overseas development aid to 0.1% of Gross National Income (GNI), down from the current 0.3%, cementing a sea change in the Conservative Party’s position on international aid.
In his keynote speech to the party conference in Manchester, Sir Mel will claim that his plans can save £47bn over the next parliament, which include cuts to welfare, the civil service, and green subsidies.
In the wake of the Truss mini-budget that saw the pound fall and interest rates soar, the senior MP will say that his party will “never, ever make fiscal commitments without spelling out exactly how they will be paid for”, and commit to fiscal responsibility.
A key part of Sir Mel’s plans to demonstrate that is to reduce foreign aid to 0.1% of GNI, or around £3bn per year – down from spending of an estimated £9.4bn in 2028-29.
The Boris Johnson government reduced aid spending to 0.5% of GNI in 2021, in order to pay for the vast public spending during the pandemic. Sir Keir Starmer announced a further cut to 0.3% of GNI earlier this year to pay for the increase in defence spending.
Bond, the network for organisations working in international development and humanitarian assistance, has hit out at the announcement, describing it as “reckless, short-sighted, and morally indefensible”.
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Its chief executive, Romilly Greenhill, told Conservatives at a fringe event at the Tory Party conference on Sunday: “Let’s just be really clear, such a policy would negatively impact millions of people around the world.
“It would harm deeply vital programmes being made in reducing, eradicating, killer diseases, and it would also severely undermine our ability to respond to devastating global crises.”
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1:55
Does it matter that foreign aid has been cut in the UK?
But the Tories say they “cannot justify taxing people in this country to pay for billions of spending abroad”, and it marks the death-knell of Tory former prime minister David Cameron’s target of spending 0.7% of GNI on aid, announced in 2011.
Welfare, green subsidies, and asylum hotels to face the chop
Another key area where Sir Mel will pledge to make savings will be the welfare system, where they claim £23bn can be cut.
He will say that narrowing the eligibility for sickness benefits, stopping claims from people with “low-level mental health problems” who could be treated instead, limiting the VAT subsidy for Motability, and reforming job-seeking obligations are key areas where savings can be made.
But a major change will be restricting welfare to British citizens – bringing Tory party policy in line with Reform UK.
But he will vow to reverse any decision from the current Labour government to lift the two-child benefit cap, which stands in contrast with Nigel Farage’s party that wants to lift it.
Sir Mel is expected to say the reforms are essential not just for balancing the books, but for tackling the deeper social damage caused by long-term dependency.
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3:03
Tories would quit European Convention on Human Rights
Another key target of the shadow chancellor is the civil service, where he will argue that £8bn in savings can be made by reducing the headcount from 517,000 down to 2016 levels of 384,000.
Scrapping the Climate Change Act and “costly and ineffective green subsidies being pushed by Ed Miliband” is also on Sir Mel’s agenda. The Tories say there are savings of £1.6bn a year to be made in this area.
And closing all asylum hotels will save at least £3.5bn, the Tories say – at least £1.6bn of which they have already allocated to their new ICE-style “removals force”, to detain and remove 150,000 illegal migrants per year.
In his speech, Sir Mel Stride MP is expected to say: “The Conservative Party will never, ever make fiscal commitments without spelling out exactly how they will be paid for.
“We’re the only party that gets it. The only party that will stand up for fiscal responsibility. We must get on top of government spending.
“We cannot deliver stability unless we live within our means. No more pretending we can keep spending money we simply do not have.”
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But Labour Party chair Anna Turley said: “The Tories let welfare bills, civil service numbers and asylum hotel use skyrocket on their watch – and they’ve never apologised. Now they want to rehash failed promises from their failed manifesto to try to solve the problems they caused.
“This is the same old Tories, with the same old policies. They didn’t work then and you can’t trust them now.”
And Liberal Democrat Treasury spokeswoman Daisy Cooper said it was “clear the Conservative Party learnt absolutely nothing from their disastrous handling of the economy, which left families struggling with a cost-of-living crisis and public services on their knees”.
She added: “Cutting vital support to bring household bills down, trying to balance the books on the backs of people with mental health conditions and slashing the UK’s soft power abroad through aid budget cuts shows Trussonomics is still in full swing.”