The Government must tackle the cost of cancer for children and young people

Today, Prime Minister Liz Truss announced the government’s plans to address the rising cost of energy being experienced up and down the country. The plan includes a freeze to the energy price cap and therefore a freeze to household energy costs from 1st October 2022 until October 2024, meaning that average household energy bills in England, Scotland and Wales will remain at around £2,500 per year for two years. Equivalent support was also confirmed for households in Northern Ireland, those which use heating oil or heat networks, and for business and charities.  

This announcement comes just two days after Liz Truss was officially appointed as Prime Minister, and announced in her maiden speech to the nation that her top three priorities would be growing the economy, dealing with the energy crisis, and putting the NHS on a stable footing.  

Prior to today’s announcement, the energy price cap had been set at an average yearly energy bill total of ~£2,000, and was set to rise to ~£3,500 per year in October, and potentially higher in 2023. In May, the government announced that all households would receive £400 off of their energy bills in six instalments from October to also help with the cost of energy. This £400 is included in the figure in today’s announcement and households will still receive this grant.  

Rachel Kirby-Rider, Chief Executive of Young Lives vs Cancer says:  

“We have been calling on the government to tackle the huge costs experienced by children and young people with cancer and their families for years. Young cancer patients are disproportionately affected by the cost of living crisis, and were already experiencing unmanageable costs associated with living with cancer before bills started to rise.  

When you care for a child or a young person with cancer, you don’t have a choice on whether to keep the heating on to keep them well. What is needed is an energy and cost of living plan that protects the poorest and most vulnerable – including children and young people with cancer. And today’s announcement did not deliver on that. 

The Prime Minister’s plan will stop energy prices rising further for now, but it doesn’t go far enough to address the financial difficulties being experienced as a result of the latest energy price cap increase, or the rising costs of food and other essentials.” 

Cancer Costs  

Many families find themselves plunged into debt due to the spiralling costs of cancer. Our research shows that before the Covid-19 pandemic and cost of living crisis, families were spending an average of £600 in additional costs per month due to their child’s cancer treatment. With inflation now at 9%, this cost will have, and continues to, increase. We also found that before the pandemic, nearly one in five (18%) parents were struggling to afford food for their children, two thirds (66%) of families were struggling to afford household bills, and one in five (22%) families were struggling to afford heating. Last winter, Young Lives vs Cancer had to step in to help fill the gaps and provide a Winter Emergency Grant to help families who were struggling with costs. We’ll continue to do everything we can to support those in need, but this is not a long term or sustainable solution.  

The financial support currently provided just isn’t enough. Applying for Disability Living Allowance and Personal Independence Payment (two of the benefits available to children and young people with cancer) is stressful and there are often long waits between applying and receiving a payment. Cancer Costs start immediately and young cancer patients and their families should be entitled to access financial support from day one of diagnosis. 

The cost of cancer also goes far beyond the financial. Living with cancer has a significant impact on young cancer patients’ mental health and, those we support have already been telling us that they are increasingly worried by the cost of living with cancer.   

A Young Cancer Patient Travel Fund   

One of the biggest financial challenges faced by young cancer patients and their families are travel costs to and from hospital as services are delivered mostly at specialist centres often far from home. Young cancer patients and their families travel an average 60 miles to and from hospital for treatment, with some of the longest journeys being experienced in Wales and Scotland. Our research in 2018 highlighted that parents could spend around £180 a month on travel. We’re calling for a young cancer patient travel fund in each nation to support families with these costs. In 2021 the Scottish government launched a £5 million annual ‘Young Patients Family Fund’, covering expenses for food, travel and overnight accommodation. We would welcome similar funds in each nation so families can get more of the financial support they need, and a review and expansion of the fund in Scotland.  

Financial Support No Matter Where You Are
Young Lives vs Cancer is committed to ensuring that no matter where you are in the UK, you have the financial support that you need. In addition to today’s announcement, additional support including the expansion of the Scottish Child Payment to £25 per week, the Welsh Government’s provision of the Wales winter fuel support scheme, and the availability of the £400 Energy Bill Support Scheme in Northern Ireland have also been confirmed. 

Addressing Cancer Costs  

To truly address the costs that young cancer patients and their families are experiencing, the government needs to commit to a holistic package of support which includes age-appropriate care and support, financial assistance for cancer costs, and mental health and emotional support. The voices and experiences of children and young people with cancer cannot continue to be overlooked and we are eager to see how the government’s 10-Year Cancer Plan will meet the unique needs of young cancer patients.