Young Lives vs Cancer calls on Government to change the three-month eligibility rule restricting access to disability benefits for families of children with cancer

Cancer patients must wait three months after diagnosis to be eligible for disability benefits. And yet, young people facing a cancer diagnosis face an overwhelming and immediate need for financial support. 

Children and young people and their families facing this delay have the extra pressure of immediate costs due to treatment starting straight away, with some leukaemia patients starting treatment the same day as detection and others diagnosed immediately after a trip to A&E. Treatment is provided in specialist treatment centres, an average of 80 mile round-trip leaving families facing extra costs of fuel, immediate extra childcare for siblings, food and clothing from day of diagnosis. 

The charity’s research shows young people and families are waiting seven-months for disability benefits while facing £5,000 in extra costs. 

• Seven-month average wait time from diagnosis to decision for receiving disability benefits  

• Young people with cancer and families of children with cancer face £700 in extra costs per month on average after diagnosis 

• 3 in 5 young people and families had to use their savings following diagnosis  

• 1 in 2 had to borrow money following diagnosis (either from friends/family or loans) 

Young Lives vs Cancer, the UK leading charity for children and young people (0-25) with cancer and their families, has today (Monday 3 March) published a report, The Cost of Waiting on the impact of the current disability benefits system on children young people with cancer and their families. The research finds young people and families facing cancer across the UK wait seven months from diagnosis before receiving any government disability benefits. While they wait, families must find around £5,000 in extra costs while facing cancer. 

Under the current disability benefits system (Disability Living Allowance (DLA) and Personal Independence Payment (PIP) from UK Government, and Child Disability Payment (CDP) and Adult Disability Payment (ADP) from Scottish Government), children and young people with cancer and their families must wait three months before being eligible to receive disability benefits, even with a confirmed diagnosis. Then, once they can apply, they face an average four-month wait before receiving a decision on any financial support. Yet the first months following a cancer diagnosis are the most intense in terms of immediate financial outlay. 

Rachel Kirby-Rider, Chief Executive at Young Lives vs Cancer says: “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.  

“From the point of diagnosis, children, young people and their families have to find around £700 each month to pay for extra costs of living with cancer such as travel to hospital, food and household bills. With a seven month wait from diagnosis to decision for receiving these disability benefits, many families are getting into debt before they get the support they need.” 

In 2024 Young Lives vs Cancer supported more than 2,000 individual young people and families to access disability benefits. The demand for this support has been so high that in the last year the charity was left with no choice but to increase operation of their Welfare Advice Line, in partnership with Citizen’s Advice, from three to five days a week. In 2024 over 630 young people and families were supported by the line, helping them to gain an estimated total of over £1.4m in benefits.   

Rachel says: “While young people and families wait for the disability benefits they need, Young Lives vs Cancer works hard to fill the gaps in financial support and I would urge anyone needing support to reach out to our Welfare Benefits team. But, our support can only go so far. The disability benefits system desperately needs to change to make sure children, young people and their families are getting the financial support they need , when they need it. We are calling on the UK and Scottish Governments to make sure these systems are set up to provide them with the financial support as soon as they are diagnosed.” 

Young Lives vs Cancer believes children and young people with cancer should be entitled to access disability benefits from the day of diagnosis. The charity is calling 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 these patients. 

While young people and families of children with cancer wait for their disability benefits, Young Lives vs Cancer Specialist Social Workers step in to provide financial grants, navigate them through the application process and help access support through their Welfare Benefits and Housing Support Service advice line in partnership with Citizens’ Advice.  

To find out more about Young Lives vs Cancer and its report on welfare and benefits, visit the charity’s website: www.younglivesvscancer.org.uk  

Notes to Editor: 

Research: 

The new report shows key findings from research conducted by Young Lives vs Cancer between June and October 2024. The research included an online survey with a total of 311 participants and follow-up interviews with 13 individuals. Respondents included young people aged 16 to 26, and parents or caregivers of children and young people under 27, who have undergone cancer treatment within the past two years.