"If I’ve got to have treatment, I get a weekly ticket for both me and my mum […] that’s 360 just for the train ticket. I’ve then got to get a single day ticket […] so it’s then another £75 on top. Weekly parking is about £50. So, what's that? £410, just for the train and parking."
- Young cancer patient
Raising awareness of #CancerCosts, the latest Young Adults vs Cancer research explores the financial impact of a cancer diagnosis on children, young people and their families. Highlighting that annual inflation has reached a four-decade high in the last year, the charity found that of those surveyed (259), the average cancer costs per month include: food (£144), energy (£68), clothing (£56), toys (£48), parking (£24), childcare (£30), telephone calls (£15), accommodation (£14), and travel (£250). The combined costs add up to £691 which is 15% higher than in 2017 when this research was last conducted. Alongside these costs, a cancer diagnosis comes with an additional financial penalty, with the majority of young cancer patients and their families experiencing a loss of, on average, £6,000 in earnings annually.
At Guardian’s #LifeUnited2023 event, Rachel Kirby-Rider, CEO of Young Lives vs Cancer, exclaimed that “beyond treatment, [cancer patients] should have the same opportunities as everyone else,” and “healthcare is only free if you can get there.” She hopes this research will “shine a light on how cancer costs.”
In the charity’s report, it was highlighted that nearly all young cancer patients and their families (96%) have to pay extra for travel, costing an average of £250 per month. One family said that they had to travel “over 50 miles return, daily for 10 days, during our teen being hospitalised,” while another explained that “if I’ve got to have treatment, I get a weekly ticket for both me and my mum […] that’s 360 just for the train ticket. I’ve then got to get a single day ticket […] so it’s then another £75 on top. Weekly parking is about £50. So, what's that? £410, just for the train and parking.”
To reach hospitals and treatment centres, 93% used a car for at least some of their journey. This resulted in additional costs such as car maintenance and repairs (£17 per month), insurance premiums (£3 per month), and breakdown cover (£2 per month). As well as travel costs, 21% have to pay for childcare, spending an extra £30 per month. This is particularly prevalent among those with other children who may be unable to call upon their family to look after siblings during treatment.
Meanwhile, 65% have to pay substantial parking costs, since free parking and concessions aren’t available at all hospitals and treatment centres. With the frequency and length of time young cancer patients and their families have to spend receiving treatment, these costs can quickly build up - especially when young cancer patients and their families are forced to park in the more expensive off-site car parks.
While many young cancer patients and their families are offered free accommodation by the NHS or charities, 12% of those surveyed said they had to pay for accommodation during treatment. Across all young cancer patients and their families, the average accommodation spend was an extra £14 per month.
During treatment, young cancer patients and their families spend significant time travelling to and staying at the hospital, often without cooking or refrigeration facilities. This leaves many with little choice but to pay extra for food. Likewise, young cancer patients and their families sometimes have to invest in specific or specialist food as well as extra hygiene caution for the food they buy. All these factors considered, nearly all young cancer patients and their families (96%) paid more on food after their diagnosis, spending an average of £144 per month.
Further costs were incurred for toys and clothes. As one family described, “when travelling we sit around for hours in the car, then sit for hours in a waiting room. It’s really boring for an adult let alone a 3 year-old. We give him treats.” Parents and carers described using treats as bribes to encourage children and young people to attend difficult appointments or treatments which they were resistant to attending. 61% reported spending more on toys and treats following their diagnosis, spending an average of £48 per month. Likewise, given the impact of treatment on their bodies, 65% of young cancer patients have to buy new clothes for both their time on the ward and their journeys travelling back and forth, spending an average of £56 per month.
Since young cancer patients have to spend more time at home in between their hospital visits, 61% saw their household bills increase by, on average, £68 per month. One family explained, “Obviously [my son] is at home every day which means we have to have the heating on every day. So, gas and electric prices have gone up.” These costs are often due to young cancer patients being immunocompromised or feeling colder because of their treatment. Some families had to use extra energy to prepare their food and drink, with one family saying their daughter could only have boiled water for six months, “so every time she had a drink, we had to boil the kettle.”
Alongside additional costs, young cancer patients and their families have to endure a loss of income and earnings. Overall, 71% of young cancer patients and their families experienced this financial penalty, having to take time off or away from work, or changing employment arrangements to cater for treatment. This was especially prevalent among those living outside of England, with those located in Northern Ireland, Wales, and Scotland more likely to see their income and earnings decrease following a cancer diagnosis.
The longer treatment goes on, the more likely a young cancer patient and their family are to experience a loss in income, with 40% having to take sick leave, followed by 35% having to take compassionate leave, 35% having to change to more flexible working arrangements, 32% having to stop working completely, 31% having to reduce their hours, 30% having to take unpaid leave, and 29% having to use holiday/annual leave.
For 31% of those households experiencing a loss in income and earnings, this exceeded £10k annually while the average loss in income was £6,117. These losses came despite the social security system through which 58% of young cancer patients and their families received additional benefits following their diagnosis.
In most cases, there were disability benefits such as Disability Living Allowance (DLA) (66%), Carer’s Allowance (28%), Personal Independence Payments (PIP) (19%), or Child Disability Payments (7%) for those living in Scotland. In addition to these, the other most common new or additional benefits claimed was Universal Credit (UC) (23%).
In light of these substantial costs, Young Lives vs Cancer has concluded that when savings weren’t an option or where they had been completely exhausted, many young cancer patients and their families were had to take on “ever-increasing” debts. One family said that “every month we were going into negative in the bank which we have never done before. I received full pay for six months but that still wasn’t enough to cover extra costs.” Another said they were “scared of what could happen if we didn’t have money to go to treatment.”
Young Lives vs Cancer has suggested the following measures:
- Create the Young Cancer Patient Travel Fund to help children, young people, and their families, afford the cost of travelling for essential treatment,
- Establish free parking for all young cancer patients and their families at and around all hospitals and treatment centres,
- Ensure that financial services and energy companies with vulnerable customers’ policies include the parents/caregivers of young cancer patients,
- Establish relevant and accessible financial support, including through the social security system, for young cancer patients and their families from the point of diagnosis, to help with the immediate costs associated with receiving a cancer diagnosis,
- Ensure employers have suitable support for workplace participation and fulfil illness or caring responsibilities.
