Parents of seriously ill children are urging the Government to give them paid leave while they take time off work to be carers, as they are being forced to “beg” for cash to pay for their treatment.
Helen Duffy’s son, Michael, was diagnosed with high-risk neuroblastoma in June 2021, when he was less than a year old.
Michael spent fourteen months in treatment at Great Ormond Street Hospital, during which time, Helen had to stop work to be at his bedside.
“As soon as my son was diagnosed, the world completely fell apart,” she told The i Paper. “I didn’t leave the hospital after diagnosis for at least three weeks. It became completely impossible to work.”
Helen was working two jobs at the time, including a part-time role, which she said kept paying her out of “goodwill”.
‘My income vanished overnight’
But Helen’s other employer would only pay her for the hours that she worked, causing her to lose over £1,000 a month and halving her family’s income.
“There was no job security there at all. That income just vanished overnight,” she said.
Helen and her husband spent more than £10,000 on extra costs related to Michael’s cancer.
Her loss of income coincided with suddenly having to pay for transport costs for hospital visits, food while the family was there and other related treatment costs.
This comes as the Government launched a consultation on 9 June, which is examining whether parents whose children are in extremely poor health should be given paid time off work – something they are not currently entitled to.
Parents who have to take time off to care and charities which support them, say the payment is needed because families’ finances are being crippled by care costs and they need a “safety net” for when the “worst possible thing” happens to them.
Helen and her husband spent more than £10,000 of their savings on caring for Michael while he was ill‘Struggling families have the least support’
Explaining how the situation put pressure on their finances, she said: “We just ate entirely into our savings,” adding many other families would not have been able to do so.
Helen and her partner have met with other parents in the same situation, who have experienced extreme hardship due to the financial pressure they have been under.
She said: “We met families who lost their jobs and had to sell personal items. Obviously a lot of families choose to fundraise and their community has to rally around them, but you shouldn’t have to go around with a begging bowl.
“Not everyone has rich friends and neighbours, it becomes a self-fulfilling thing that the families that are going to struggle the most then have the least support.”
Ceri Morys Menai-Davis, who founded the charity It’s Never You after his son Hugh died of cancer in 2021 to support parents of seriously ill children, said: “The average cost of having a seriously ill child is around £750–£1,000 per month. This includes travel, food, parking charges and the general costs associated with caring for a vulnerable child.
“The parents we have spoken to have maxed out credit cards, sold their homes, sold their clothes on Vinted, and made significant personal sacrifices simply to get by. One mother even had to go without dinner while staying in hospital because she could only afford to buy food for her daughter.”
Helen lost more than £1,000 a month in pay while she took time off work to care for MichaelRight to return to work
Another part of the Government’s consultation is whether parents who take time off work to care for their children should have a guarantee that they’ll get their job back afterwards, something Helen thinks is crucial.
She said: “If you’re on maternity leave, you’re protected from a restructure at work. But if you’re off looking after a sick child who’s got cancer in six months, you’re not protected.
“When your child is so unwell, there’s literally nowhere else you can be than at their bedside.“You’re not thinking about financial security, but the mortgage still needs to be paid, bills still need to be paid, everything still needs to be paid.
“Caring for a sick child is a 24-7 job and it’s right that the Government is kind of looking into how they can support parents.”
Ramzi Suleiman, policy manager at Carers Trust, also welcomed the proposal, saying: “Building on the existing right to unpaid leave and levelling this up to paid leave would offer greater financial security and peace of mind for potentially millions of carers.
“Most of us will be carers at some point in our lives, and carers being out of work costs the economy billions every year. Securing measures that support carers to stay in work is beneficial for everyone.”
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