Connect with us

Published

on

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
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.

More on Cost Of Living

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.”

Seb

‘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
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.

Seb, with mum Emma, in hospital
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.”

Teddy, post diagnosis
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.

Teddy, 3, at the start of treatment
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.

Teddy, 3, with mum Katherine, and younger brother Rupert
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.

Hugh inspired his parents to set up a charity to give support to parents
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.”

Worried about the cost of living? Share your story with Sky News

You can share your story, pictures or video with us using our app, private messaging or email.

:: Your Report on Sky News apps

:: WhatsApp

:: Email

By sending us your video footage/ photographs/ audio you agree we can broadcast, publish and edit the material.

The Great Debate

Continue Reading

UK

Justice system ‘frustrating’, Met Police chief says – as he admits London’s ‘shameful’ racism challenge

Published

on

By

Justice system 'frustrating', Met Police chief says - as he admits London's 'shameful' racism challenge

It is “shameful” that black boys growing up in London are “far more likely” to die than white boys, Metropolitan Police chief Sir Mark Rowley has told Sky News.

In a wide-ranging interview with Sunday Morning with Trevor Phillips, the commissioner said that relations with minority communities are “difficult for us”, while also speaking about the state of the justice system and the size of the police force.

Sir Mark, who came out of retirement to become head of the UK’s largest police force in 2022, said: “We can’t pretend otherwise that we’ve got a history between policing and black communities where policing has got a lot wrong.

“And we get a lot more right today, but we do still make mistakes. That’s not in doubt. I’m being as relentless in that as it can be.”

He said the “vast majority” of the force are “good people”.

However, he added: “But that legacy, combined with the tragedy that some of this crime falls most heavily in black communities, that creates a real problem because the legacy creates concern.”

Sir Mark, who also leads the UK’s counter-terrorism policing, said black boys growing up in London “are far more likely to be dead by the time they’re 18” than white boys.

“That’s, I think, shameful for the city,” he admitted.

“The challenge for us is, as we reach in to tackle those issues, that confrontation that comes from that reaching in, whether it’s stop and search on the streets or the sort of operations you seek.

“The danger is that’s landing in an environment with less trust.

“And that makes it even harder. But the people who win out of that [are] all of the criminals.”

Met Police Commissioner Sir Mark Rowley said racism is still an issue in the force
Image:
Met Police Commissioner Sir Mark Rowley

The commissioner added: “I’m so determined to find a way to get past this because if policing in black communities can find a way to confront these issues, together we can give black boys growing up in London equal life chances to white boys, which is not what we’re seeing at the moment.

“And it’s not simply about policing, is it?”

Sir Mark said: “I think black boys are several times more likely to be excluded from school, for example, than white boys.

“And there are multiple issues layered on top of each other that feed into disproportionality.”

‘We’re stretched, but there’s hope and determination’

Sir Mark said the Met is a “stretched service” but people who call 999 can expect an officer to attend.

“If you are in the middle of a crisis and something awful is happening and you dial 999, officers will get there really quickly,” Sir Mark said.

“I don’t pretend we’re not a stretched service.

“We are smaller than I think we ought to be, but I don’t want to give a sort of message of a lack of hope or a lack of determination.”

“I’ve seen the mayor and the home secretary fighting hard for police resourcing,” he added.

“It’s not what I’d want it to be, but it’s better than it might be without their efforts.”

Please use Chrome browser for a more accessible video player

How police tracked and chased suspected phone thief

‘Close to broken’ justice system facing ‘awful’ delays

Sir Mark said the criminal justice system was “close to broken” and can be “frustrating” for police officers.

“The thing that is frustrating is that the system – and no system can be perfect – but when the system hasn’t managed to turn that person’s life around and get them on the straight and narrow, and it just becomes a revolving door,” he said.

“When that happens, of course that’s frustrating for officers.

“So the more successful prisons and probation can be in terms of getting people onto a law-abiding life from the path they’re on, the better.

“But that is a real challenge. I mean, we’re talking just after Sir Brian Leveson put his report out about the close-to-broken criminal justice system.

“And it’s absolutely vital that those repairs and reforms that he’s talking about happen really quickly, because the system is now so stressed.”

Giving an example, the police commissioner went on: “We’ve got Snaresbrook [Crown Court] in London – it’s now got more than 100 cases listed for 2029.”

Sir Mark asked Trevor Phillips to imagine he had been the victim of a crime, saying: “We’ve caught the person, we’ve charged him, ‘great news, Mr Phillips, we’ve got him charged, they’re going to court’.

“And then a few weeks later, I see the trial’s listed for 2029. That doesn’t feel great, does it?”

Asked about the fact that suspects could still be on the streets for years before going to trial, Sir Mark conceded it’s “pretty awful”.

He added: “If it’s someone on bail, who might have stolen your phone or whatever, and they’re going in for a criminal court trial, that could be four years away. And that’s pretty unacceptable, isn’t it?”

Please use Chrome browser for a more accessible video player

Leveson explains plans to fix justice system

Challenge to reform the Met

The Met chief’s comments come two years after an official report found the force is institutionally racist, misogynistic and homophobic.

Baroness Casey was commissioned in 2021 to look into the Met Police after serving police officer Wayne Couzens abducted, raped and murdered Sarah Everard.

She pinned the primary blame for the Met’s culture on its past leadership and found stop and search and the use of force against black people was excessive.

At the time, Sir Mark, who had been commissioner for six months when the report was published, said he would not use the labels of institutionally racist, institutionally misogynistic and institutionally homophobic, which Baroness Casey insisted the Met deserved.

However, London Mayor Sadiq Khan, who helped hire Sir Mark – and could fire him – made it clear the commissioner agreed with Baroness Casey’s verdict.

A few months after the report, Sir Mark launched a two-year £366m plan to overhaul the Met, including increased emphasis on neighbourhood policing to rebuild public trust and plans to recruit 500 more community support officers and an extra 565 people to work with teams investigating domestic violence, sexual offences and child sexual abuse and exploitation.

Continue Reading

UK

UK measles cases rising among children – with leading NHS hospital ‘concerned’

Published

on

By

UK measles cases rising among children - with leading NHS hospital 'concerned'

A leading NHS hospital has warned measles is on the rise among children in the UK, after treating 17 cases since June.

Alder Hey Children’s Hospital in Liverpool said it is “concerned” about the increasing number of children and young people who are contracting the highly contagious virus.

It said the cases it has treated since June were for effects and complications of the disease, which, in rare cases, can be fatal if left untreated.

“We are concerned about the increasing number of children and young people who are contracting measles. Measles is a highly contagious viral illness which can cause children to be seriously unwell, requiring hospital treatment, and in rare cases, death,” the hospital said in a statement to Sky News.

In a separate open letter to parents and carers in Merseyside earlier this month, Alder Hey, along with the UK Health and Security Agency (UKHSA) and directors of Public Health for Liverpool, Sefton and Knowsley, warned the increase in measles in the region could be down to fewer people getting vaccinated.

The letter read: “We are seeing more cases of measles in our children and young people because fewer people are having the MMR vaccine, which protects against measles and two other viruses called mumps and rubella.

“Children in hospital, who are very poorly for another reason, are at higher risk of catching the virus.”

What are the symptoms of measles?

The first symptoms of measles include:

• A high temperature

• A runny or blocked nose

• Sneezing

• A cough

• Red, sore or watery eyes

Cold-like symptoms are followed a few days later by a rash, which starts on the face and behind the ears, before it spreads.

The spots are usually raised and can join together to form blotchy patches which are not usually itchy.

Some people may get small spots in their mouth too.

What should you do if you think your child has measles?

Ask for an urgent GP appointment or call 111 if you think your child has measles.

If your child has been vaccinated, it is very unlikely they have measles.

You should not go to the doctor without calling ahead, as measles is very infectious.

If your child is diagnosed with measles by a doctor, make sure they avoid close contact with babies and anyone who is pregnant or has a weakened immune system.

The skin of a patient after 3 days of measles infection
Image:
The skin of a patient after three days of measles infection

It comes after a Royal College of Paediatrics and Child Health (RCPCH) report released earlier this month determined that uptake of vaccines in the UK has stalled over the last decade and is, in many cases, declining.

It said none of the routine childhood vaccinations have met the 95% coverage target since 2021, putting youngsters at risk of measles, meningitis and whooping cough.

The MMR vaccine has been available through the NHS for years. Two doses gives lifelong protection against measles, mumps and rubella.

File photo of a MMR vaccine
Image:
Two doses of the MMR vaccine give lifelong protection against measles, mumps and rubella. Pic: iStock

According to the latest NHS data, Liverpool was one of the cities outside London with the lowest uptake of the MMR vaccination in 2023-2024.

By the time children were five years old, 86.5% had been give one dose, decreasing to 73.4% for a second dose.

The RCPCH report put the nationwide decline down to fears over vaccinations, as well as families having trouble booking appointments and a lack of continuous care in the NHS, with many seeing a different GP on each visit.

Read more from Sky News:
Met Police chief on London’s ‘shameful’ racism challenge
‘My voice box was removed after NHS missed cancer’

In the US, measles cases are at their highest in more than three decades.

Cases reached 1,288 on Wednesday this week, according to the US Centres for Disease Control and Prevention, with 14 states battling active outbreaks.

The largest outbreak started five months ago in communities in West Texas, where vaccination uptake is low. Since then, three people have died – including two children in Texas and an adult in New Mexico – with dozens more in hospital.

Continue Reading

UK

‘My voice box was removed after NHS missed my throat cancer’

Published

on

By

'My voice box was removed after NHS missed my throat cancer'

Steve Barton is angry, and he has every right to be.

The 68-year-old retired engineer stares at his medical notes that, he says, expose in black and white the moment his life changed forever.

“I have somehow missed… due to my mistake,” a doctor writes in one of the notes, after it became apparent that Mr Barton had not been urgently referred to specialists over what later became an aggressive form of throat cancer.

Steve now has a prosthetic voice box and is one of many British patients fighting medical negligence claims after being misdiagnosed.

NHS officials in Scotland are dealing with thousands of cases annually. Meanwhile, Westminster’s Public Affairs Committee (PAC) recently disclosed England’s Department of Health and Social Care has set aside £58.2bn to settle clinical lawsuits arising before 2024.

Mr Barton, who lives in Alloa near Stirling, repeatedly contacted his doctors after he began struggling with his breathing, speaking and swallowing. His concerns were recorded by the NHS as sinus issues.

As panic grew and his voice became weaker, Mr Barton paid to see a private consultant who revealed the devastating news that a massive tumour had grown on his larynx and required part of his throat to be removed immediately.

More on Health

“I am angry, I am upset, I don’t want anyone else to go through this,” Mr Barton told Sky News.

“There were at least four, possibly five, conversations on the phone. He [the doctor] said to me that it sounds like I’ve got reflux.”

‘He was palmed off’

Mr Barton is now unable to work and cannot shower by himself because if water enters the hole in his neck, he could drown.

And a windy day can cause a debilitating coughing fit if a gust catches his prosthetic voice box.

Steve in hospital
Image:
Steve Barton is one of thousands battling medical negligence cases

Asked if he believes this was avoidable, Mr Barton replied: “Absolutely. 100%.”

His wife, Heather, told Sky News: “He hates this. You see him crying. It breaks my heart. It’s been hard emotionally.”

She added: “Everybody knows their own body. He was palmed off and the consequence is a neck dissection. It [life] changed overnight.”

Legal battle over compensation

The Barton family have been locked in a legal battle over their ordeal with the Medical and Dental Defence Union Scotland (MDDUS) – a body which indemnifies GPs.

It has not admitted formal liability in this case but has agreed to settle financial compensation to Mr Barton.

Steve

Izabela Wosiak, a solicitor from Irwin Mitchell who represents the Bartons, said: “Cases like Steve’s are complex and usually quite difficult, but solicitors have accepted there was no defence to this case.

“They have arranged to make an interim payment; however we are still in the process of negotiating final settlement.”

A MDDUS spokeswoman refused to comment while talks are being finalised.

What is the scale of medical negligence in Britain?

The NHS in Scotland is under the devolved control of the Scottish government.

Figures suggest there were almost 14,000 clinical negligence claims and incidents in 2023/24, an increase on the previous year.

It comes as PAC warned that the total liabilities in England’s health service has hit £58.2bn.

Read more:
The officers who confronted ‘coward’ Southport killer
Two dead after care home crash
More hosepipe bans are on the way

PAC chair Sir Geoffrey Clifton-Brown MP told Sky News: “I extend my sympathies to Steve and his family. Unfortunately, he is not alone.

“Some are really heart-wrenching tales. Every single claim somebody is involved, someone has been in some way injured, so this is a terrible thing.

“We are going to be working on how we can make the whole system less litigious and get compensation paid out quickly because if the state does harm to somebody, the least they could do is to compensate them as quickly as possible.”

Paul Whiteing, the chief executive of patient safety charity Action Against Medical Accidents, told Sky News: “The NHS itself last year [in England] paid out just over £5bn in compensational set aside money for compensation that it would need to pay out.

“It’s a huge cost and of course that doesn’t speak to the cost to every individual, every family, every person who is impacted by the consequences of some form of medical accident and the trauma that can go with that.”

Continue Reading

Trending