Young people with cancer in England are waiting an average of seven months before receiving disability benefits to support their treatment, research shows, prompting calls for people with a diagnosis to qualify for help immediately.
Research by the charity Young Lives shows the families of children with cancer on average face almost £700 each month in additional expenses during their treatment.
The Equality Act 2010 (in England, Scotland and Wales) and the Disability Discrimination Act 1995 (in Northern Ireland) consider a diagnosis of cancer as a disability. But young people with cancer and their families must wait three months before being eligible to receive disability benefits, even with a confirmed diagnosis.
Once they can apply, they face an average four-month wait before receiving a decision on any financial support.
The first months after a cancer diagnosis can require an immediate financial outlay and the system does not allow people to receive backdated payments.
If someone is expected to live 12 months or less, they do not need to meet the three-month qualifying period to be eligible, with special rule exemptions applied.
Oliver, a 16-year-old from Solihull, was diagnosed with a rare form of bone cancer in his leg last year. Tests revealed it was adamantinoma and he had to have his leg amputated.
“They told me Oliver wasn’t ill enough to claim [benefits] – even though he had cancer and had his leg off,” his mother, Kerry, said.
She applied for benefits support in April last year and was given an outcome in September, five months later.
“The hospital is an hour away from us and I don’t drive. It was costing us £48 a day for us to travel in taxis there and back.”
The family needed to buy new clothes to fit Oliver, and faced higher electricity costs to charge his prosthetic leg. “Ollie’s leg needs electricity as it is micro processing. If I don’t have electricity, he can’t walk.”
Kerry also needed to heat the house more too to keep Oliver warm. “He had immunosuppression for six months and so the house had to be heated constantly. It’s completely financially broken me,” she said.
Danielle Roberts, from north Wales, applied for disability living allowance in January 2024 after her nine-year-old daughter, Jasmine, was diagnosed with cancer in October 2023.
Roberts did not receive any financial support until five months later in June 2024, eight months after her child was diagnosed.
They live an hour and 15 minutes away from the hospital – a 120-mile round trip – so every journey back and forth would cost about £30 in fuel. Roberts said this, on top of food costs while in hospital and extra heating bills while her daughter was at home, all mounted up.
Research by Young Lives found 96% of young people with cancer and their families incur additional travel costs after diagnosis, on average £250 a month.
The charity is calling on the government to scrap the three-month qualifying period for children and young people with cancer to claim disability benefits and for the system to be simple, efficient and streamlined, utilising medical evidence to quickly determine eligibility for patients.
A Department for Work and Pensions spokesperson said: “We are committed to ensuring people can access financial support through personal independence payment and disability living allowance for children in a timely manner.
“But we recognise waits are too high, and we have increased the number of staff to respond to the increase in claim volumes.”
