Mabel’s family were initially told ‘the absolute worst could’ve happened’
Rachel pictured with Mabel(Image: submitted)
A Nottinghamshire mother was told her daughter wouldn’t be able to receive benefits as the girl “didn’t have cancer for long enough”.
Rachel Sinclair’s daughter, Mabel, then three years old, was diagnosed with Wilms’ cancer, a type of kidney cancer that primarily affects children under five, in 2023.
Mabel’s family were initially told “the absolute worst could’ve happened”, but treatment proved to be a success for the little girl, who was cancer-free in just under six months.
Rachel, 43, said: “During treatment, we were told to apply for child Disability Living Allowance (DLA).
“After almost a year of waiting to hear from them [the Department for Work and Pensions – DWP], we were informed that because Mabel didn’t have cancer for long enough, she wasn’t entitled to it. It’s incredible, very much shocking.”
To receive the allowance, a child must experience health difficulties for at least three months and expect them to last for at least another six.
Research from charity Young Lives vs Cancer shows that families with a child with cancer can expect costs of up to £700 extra a month.
The Ravenshead mum said: “We were fortunate because QMC was on our doorstep and they’re one of the best centres out there.
“Both me and my partner were paid by our employers all throughout. But there was still so much involved.
“The travelling, navigating the entire amount of what you’re going through at that time and the cost involved.
“You’re worrying about your child surviving and then, if your child does survive, you’ve got to worry about whether or not you’re going to have a roof over their head. It’s so wrong.”
Rachel said that Mabel’s treatment finished in April 2024, “but she is still not 100 per cent” due to being tired from all the procedures.
Following a successful appeal to the DWP, Mabel received her DLA.
Rachel said: “Some parents don’t have this fight in them, however. It’s a 40-page document that you need to complete at a time when you just don’t have the headspace for it.
“I completed it when Mabel was in her seven-hour surgery. It feels like you’re set up to fail.
“Unless you’re in that dreaded situation, you don’t ever know how awful it is and to have the financial impact hanging over your head only makes things worse. It needs to change.”
The mum has been working with Sherwood Forest MP Michelle Welsh and Young Lives vs Cancer to change the rules around how DLA is awarded to children with cancer.
She said: “We’ve been working to get down to Westminster to get this rule changed so that when a child is diagnosed with cancer, DLA is awarded from day one of the diagnosis because that’s when families need it.”
Rachel is also fighting for a bereavement allowance for parents whose children died of cancer.
Young Lives vs Cancer has also called for the DLA application process to be efficient and streamlined.
Rachel Kirby-Rider, chief exec at Young Lives vs Cancer, said: “Every day, 12 children and young people face a cancer diagnosis.
“The last thing a young person or family should be thinking about when they receive this life-changing news is how they are going to afford the immediate and overwhelming extra costs that come when facing cancer.
Families are facing around a seven-month wait from diagnosis to decision for receiving vital disability benefits like DLA and PIP, leaving many families struggling, getting into debt and making impossible decisions before they get the support they need.
“As the Department of Work and Pensions reviews other areas of the disability benefits system, now is the time to listen to the voices of children and families to bring much-needed reforms to DLA too.”
Nottinghamshire Live understands eligibility for DLA is assessed on the extent to which the disability or health condition gives rise to care and mobility needs, not the disability or health condition itself.
A DWP spokesperson said: “Ensuring disabled children and those with long-term health conditions get the support they need is of utmost importance to us.
“There are specific eligibility criteria in place which must be met to be awarded Disability Living Allowance and we have specially trained case managers who examine all the evidence available to determine this.”
Nottinghamshire Live has approached Michelle Welsh MP for comment.
You can support Rachel’s fundraiser here.
