The impact of cancer on young lives is far more than medical. With it, comes a hidden and often devastating financial burden that many do not see or expect.
While disability benefits are meant to help with these additional costs, our research The Cost of Waiting found that many children and young people with cancer and their families are left waiting significant periods, for support they desperately need.
Key findings
4,200 children and young people in the UK are diagnosed with cancer every year. We found that children and young people with cancer and their families:
- face an average wait of seven months between their diagnosis and a decision on their disability benefits
- have to find almost £5,000 in extra costs during this time between diagnosis and decision
- have extra costs of almost £700 extra a month after diagnosis (starting within the first month for three in five young people and their families).
As a result of this:
- three in five young people with cancer and their families had to use their savings following diagnosis
- one in two young people with cancer and their families had to borrow money following diagnosis.
Nearly £5,000 in extra costs between diagnosis and decision
1 in 2 had to borrow money following their diagnosis
3 in 5 face extra costs within one month of their diagnosis
“Heating costs and petrol and food costs completely spiral following a diagnosis, especially for child cancer as treatments are intensive, involving lengthy journeys, as local hospitals cannot treat them.” – Parent / Carer
Further insight
Due to the immediacy, intensity and impact of cancer treatment, for most children and young people with cancer and their families, the burden of these additional costs starts almost immediately after diagnosis. The wait for disability benefits means children and young people with cancer and their families typically face thousands in extra costs before receiving a decision on their application.
These sudden, unexpected costs of a cancer diagnosis, often coupled with significant drops in personal earnings and a prolonged wait for disability benefits, force young people with cancer and their families into impossible financial positions. Whether it’s formal methods of borrowing money through loans, or getting financial help from families and friends, many young people with cancer and their families have to ask for other means of financial support in the absence and wait for disability benefits.
The disability benefit system is not just failing to deliver the crucial financial support children and young people with cancer and their families need. For many it is causing even more distress, during an already overwhelming and traumatic time.
“It shouldn’t be only for after three months since diagnosis, it should be for all time that cancer affects you, which includes before the three-month mark. If anything, the first three months is when the support would be more helpful as for acute leukaemia, that’s when we’re in hospital the most frequently as treatment must start as soon as possible and requires near daily hospital visits in the first month and would be where financial support for things like petrol would be most helpful.” – Young person
What needs to change
To respond to the challenges and priorities expressed by young people with cancer and their families, Young Lives vs Cancer believes that:
- Children and young people with cancer and their families should be entitled to access welfare benefits immediately following diagnosis and not be subject to a qualifying period.
- The application process for welfare benefits should be simple, efficient, and streamlined, utilising medical evidence to quickly determine eligibility.
“I have been left minus in my account every month since diagnosis, with me having to borrow money off family members or beg for hand-me-down clothes from friends, and food cooked for us by my sister, as I had no money for shopping.” – Parent / Carer
Get financial help
While advocating for changes to the way disability benefits currently operate, Young Lives vs Cancer remain dedicated to continuing to offer crucial support to children and young people with cancer and their families who need our help now right now.
