Young people with cancer currently have to wait three months before they can apply for Personal Independence Payment (PIP), which leads to them cutting back on essential items such as food or clothing. With many young cancer patients often having to travel long distances to specialist treatment centres or hospitals, travel costs are a huge financial burden.
CLIC Sargent research found that on average, families of children with cancer travel an additional 440 miles per month for specialist treatment, with 8% travelling 1000 miles or more .
Ayesha McGregor, 20, from Saltcoats, North Ayrshire, Scotland, underwent chemotherapy after she was diagnosed with Hodgkin’s lymphoma in May 2016.
Ayesha now has Raynaud’s disease as a result of chemotherapy, which means she often loses the feeling in her hands and legs and can cause difficulty with day to day mobility.
She said: “Being diagnosed with cancer was hard financially. I had to stop working so I had no income, which meant I couldn’t go out and do things for myself or see my friends.
“I had to travel over 30 miles to Glasgow every week for my treatment. My dad would drop me off and then drive back for work, before picking me up again later on and driving me home, so he was doing four trips each time.
“The petrol costs were going up and up and I felt like I should’ve been helping because it was for me, but I had no money to offer.”
Food & energy bills up
During chemotherapy Ayesha was put on steroids, commonly given to help with the side effects of cancer treatment. She found that this had a huge impact on her family’s food bill.
“Our food bill practically doubled while I was on treatment. I’d be so hungry that I would come home and eat everything in the house."
"I also found that my taste buds changed so we would buy things that I thought I liked and then when it came to eating it I just couldn’t and had to find something else.”
“I know that our energy bills went up too. I spent a lot of time at home because I couldn’t go out anywhere when I was feeling poorly so I was watching TV all the time and charging my phone and laptop constantly. I needed to use them to keep myself occupied and to keep in touch with people.
“On top of all that, when you’re on chemotherapy you need to keep washing your clothes so that you don’t get ill as you’re more likely to catch things because your immune system is weaker. So I would have the washing machine and tumble drier on a lot.”
Ayesha received support from a CLIC Sargent Social Worker, who advised about the different grants and benefits she was entitled to.
She said: “If it wasn’t for my CLIC Sargent Social Worker I don’t think I’d have got PIP. The form that you have to fill out is so big and she talked me through it and helped me to fill it in properly.
“On top of that, it was delayed so it took me a while to actually receive it. It got backdated to the day I applied, but it needs to be from the day you were diagnosed.
"The costs start straight away and young people shouldn’t have to think about things like taking out loans and being able to pay them back, on top of just affording the basics like petrol for travel.”
Time for a review
CLIC Sargent is asking the government to review the PIP to young cancer patients so that they can get financial support backdated from the day of diagnosis, helping to lessen the financial impact of cancer.
In 2016, the charity’s Cancer Costs research  found that young people are spending an average of £360 a month extra while going through treatment, meaning they are already more than £1,000 out of pocket before they can even apply for PIP.
CLIC Sargent has launched a ready-made ‘email your MP’ tool for supporters to ask their local MP to write to Minister of State for Disabled People, Health and Work, Sarah Newton to request a review of the PIP for young cancer patients. The charity has also launched a local petition in its charity shop in Truro, Cornwall, Sarah Newton’s constituency.
Immediate financial impact
Clare Laxton, Associate Director for Policy and Influencing at CLIC Sargent, said: “From the day a child or young person gets the news they have cancer, the financial impact can be felt immediately.
“Treatment usually begins straight away and often many miles from home at specialist treatment hospitals, which means families have to stay away from home for considerable periods of time.
“As costs go up with additional travel, car parking and extra bills, young people find that income frequently goes down as they are forced to give up work or delay their studies with costs quickly mounting up.
“At CLIC Sargent we don’t think this is right and that’s why we’re calling on the government to review PIP for young cancer patients so they are able to access financial support when they most desperately need it.”
CLIC Sargent provides a £170 grant to families following diagnosis, to help with initial costs, and gave out more than £1 million in grants in 2016/17. It also provides free accommodation at 10 Homes from Home around the UK near hospitals where children and young people are treated for cancer, which save families from paying expensive hotel bills. CLIC Sargent also funds social workers who help people claim the sickness benefits they are entitled to, and provide emotional support.