11 hours ago
The hidden financial nightmare when your child is critically ill
Menai-Davis set up It's Never You, a charity that provides support to families facing long hospital stays, after the 'financially inhumane' circumstances his family found themselves in while trying to care for Hugh.
Every day, he says he speaks to 'parents [who] are struggling because they have to repay back debts on credit cards that they've taken out to cover that first initial hit of being away from work – they're losing their jobs, they're having to sell homes, they're having to sell clothes'.
Some parents have to rely on food banks, or miss meals to ensure that their children can eat. Others turn to crowdfunding in the absence of any financial help, although receiving over £16,000 this way invalidates eligibility for universal credit.
'The last thing you are thinking about is how to pay the mortgage'
It is the constant unknowns – whether their child might respond to treatment, and when – that adds to the enormity of families' financial burden.
Ashley Smith* has spent the first two years of her daughter's life in and out of hospital following her diagnosis with neuroblastoma, a condition that has at times required chemotherapy, five-hour trips for treatment and 12 types of medication to be administered eight times a day.
'I had to get a loan. I couldn't afford to just pay,' Smith says of the endless costs, which hit £18,000 during one period of treatment alone. These often require relocation to be close to a specialist hospital, leaving many parents paying rental costs on top of their mortgage.
For single parents like Smith, who receive no financial support from their former partners, these mount up even quicker.
To cope with the mental load of dealing with her daughter's illness, she went from full-time work to part-time to fit in with her care. 'I pick up extra hours where I can, and I work at night just to try and pay off the debt that I've got,' she says. Smith is also repaying a loan from her parents.
The financial implications have repeatedly left her in a state of 'sheer fear – it's a really scary place to be', she admits.
'You're going through the absolute worst. You're holding a baby that is lifeless, and the last thing you want to be thinking about is: 'Can I make the mortgage this month?'' She says that the last resort, should things reach that point, will be selling their home.
Menai-Davis hopes that this week's meeting finally marks the turning point for struggling families. He notes that on becoming Prime Minister, Sir Keir Starmer promised to back workers who, 'if things go wrong, might need a little bit of help. That's exactly what we're asking for now'.
