The family of a 15-year-old boy with a life-threatening brain tumour say they can hardly afford to eat properly and no longer have heating on in the day while caring for him during a cost of living crisis.
The Aneurin Bevan University Health Board was forced to cancel Noah Herniman’s routine annual MRI scan last year due to pressures the health board was facing from the pandemic.
Months later Noah, who suffers from neurofibromatosis meaning tumours grow on his nerve tissues, was diagnosed with an inoperable benign tumour at the core of his brain. You can read about Noah’s diagnosis here.
Noah’s mother Shelley is still working, as is his father Nigel, but Shelley is currently supporting Noah from their home in Chepstow where she says they can no longer afford to support him in a way that makes him most comfortable.
Even though Noah, who is going through chemotherapy, is often freezing cold due to his extensive treatment, Shelley says the family have been left with no choice but to turn off the heating other than for a couple of hours a day in the morning and evening.
Noah also requires 2,900 calories a day while undergoing treatment meaning their food bill is “through the roof”, and they receive very little financial support.
“Up to now I’ve never even looked at fuel costs,” Shelley told WalesOnline. “It was just something that came out on direct debit each month. Because of the changing tariffs I recently had a bill for seven weeks which was £165 and instead was £376 for electricity.
“It’s not just that. Noah has to go through litres and litres of milk because he has to have a high fat diet. But costs are going up all the time.
“I dread to think where it ends. I’ve now got to the point where this is crucial and I cannot afford to have the heating on.
“I think it's shameful that we’re in a country where we consider ourselves a first world country and some are living like third world citizens. It's so sad, it’s wrong and I think it will get worse.
“I never thought I'd find myself in this position caring for such a sick child. It could happen to any family.”
The family are not alone in their struggles. Macmillan’s research for 2021 found that 87% of people with cancer in Wales experienced some kind of financial impact from their diagnosis - an average increase of £734 a month on top of their usual expenditure. More than one in three people with cancer in Wales (38%) were severely financially affected by their diagnosis, and almost one in four (24%) experienced extra costs of travelling to and from their appointments while 23% saw their household bills rise following their diagnosis.
These issues have always been apparent for those who fall on hard times with sudden and severe illnesses, but the situation for patients now is terribly stark.
Consumer prices currently stand at more than five percent higher than 12 months ago, while gas prices have increased by 28% and electricity prices have risen by nine percent.
Shelley continued: “I’m lucky because I have still got an income and have still got my husband’s income, but there will be families in a similar position who have found themselves with next to nothing.”
The Hernimans, like families suffering financially as a result of a juvenile cancer diagnosis across Wales, are being supported by the charity Latch too.
“Latch is a fantastic charity and they are crucial,” Shelley said. “As a country so many people are struggling but when you’ve got people in your family who are so sick those worries are doubled.”
Gem Walker works at Feed Newport CIC, a food bank in Newport city centre, and she says weekly they are serving families they’d never seen before who now rely on food banks due to sudden and severe illnesses.
“A lot of people already coming to us are two-parent working families anyway, but then more and more we are seeing who are coming to us in these circumstances [with ill family members],” Gem explained.
“Each week we are seeing families coming in really struggling with supporting those relatives due to the cost of living. It’s so so hard. Their lives are turned upside down anyway and you never think you’d need a food bank. Then with the heating etc, it breaks my heart - it really does.
“It’s so important that when you fall on hard times with illness especially that you get in touch with your local council who will signpost services like ours. I can’t stress how important it is now.
“We are seeing people you wouldn’t expect us to see. These are two-parent working families, people who are struggling because their pension isn’t enough. It’s rife.”
Dot Clarke, a 68-year-old care home nurse who suffered a cardiac arrest at her home in Blackwood in December, returned to work days later because she couldn’t afford to live on her pension. She says she tried every avenue before returning to work, but says she remains in no fit state to be working. You can read Dot's story in full here.
“I’ve worked all my life and paid my taxes and insurance, then I reached state pension age and chose to continue working,” Dot said. “I have worked on the front line in a two-year pandemic.
“I’ve had a heart attack which I’m slowly recovering from, but within days I had to return to work and I can’t claim a thing.
“If I don’t work I get statutory sick pay which is hardly anything. I can’t claim benefits because of my age, I don’t qualify for Universal Credit.
“I have a state pension of £690 a month and my rent is £595 a month. It simply isn’t enough. I have a pension which barely covers the bills. I feel let down, I’m putting myself at risk every day.”
Shelley tells a similar story. “I’ve worked my entire life and paid into every system I possibly could have,” she added. “I’ve never had benefits. But if I quit my job I wouldn’t be entitled to job seekers allowance, low income allowance, and even carers allowance is nominal. We’ve still got a mortgage to pay and if I don’t go to work I can't pay the bills, that's the reality.
“When your child is in this position you should be spending as much time with them as you can. No parents should be in a position when they’re worrying about the next bill when their child is so ill.”
Richard Pugh, Head of Partnerships for Macmillan Cancer Support in Wales, said: “Across the board in Wales and the wider UK we see a growing cost of living crisis, especially for some of the most vulnerable in our society, with energy prices, inflation and other bills rising at a time when many people are still struggling with reduced or stagnated incomes due to the pandemic.
“Even in normal times the financial impact of a cancer diagnosis can be devastating. Yet even before this pandemic began, fewer than half of people with cancer surveyed said they were getting the financial advice and support they so desperately needed.
“Macmillan is here to offer one-off means tested grants and welfare benefits advice across Wales. We can be contacted on 0808 808 0000, which is free to call.
“Coping with a cancer diagnosis is difficult enough. No-one should have to do so while having to worry about how they are going to afford to put the heating on or food on the table.”
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