Our cancer costs campaign
The financial cost of cancer for children and young people can be devastating. We're campaigning for change to ease the financial burden on families.
From the moment the doctor says ‘cancer’, costs go up. Travel for treatment, car parking, accommodation, extra heating costs at home. Our research shows parents spend an average of £600 more per month when their child has cancer.
Many parents are also forced to give up work and can be plunged into debt because of their child’s cancer. And that’s before you add in hidden costs, like parents’ and young people’s mental health. Families should not have to face spiralling debt and mental ill health because their child has cancer.
With our Cancer costs campaign we want to change the price tag and ease the financial burden on families. Our campaign focuses on these four main elements:
Our research shows that children and young people with cancer have to travel an average of 60 miles to and from hospital for treatment. This isn’t by choice. Many young cancer patients have to travel to specialist cancer centres to get the right care they need – they can’t always go to their local hospital.
Dealing with cancer is tough enough without money worries. But cancer costs young cancer patients and their families £600 more every month. When treatment is at its most intense £180 goes on their cancer commute.
It’s not right and the government isn’t doing enough to help. Young cancer patients and their families get very little support for travel costs, and most of them don’t qualify under the government’s current system.
This has to change now.
Are we nearly there yet?
Our new report Are we nearly there yet? highlights the cost of that travel and the lack of financial support available to families. Change is urgently needed.
It sets out why we are calling on the government to create a Young Cancer Patient Travel Fund to help children and young people with cancer, and their families, deal with the financial impact of a cancer diagnosis and limit the damage cancer causes to young lives.
During Childhood Cancer Awareness Month 2018 we launched a campaign to highlight the costs children and young people face when travelling to hospital for treatment and gathering public support for a Young Cancer Patient Travel Fund.
On 26 September 2018 we handed in a petition to the Department of Health & Social Care with over 30,000 signatures challenging the government to create a fund.
Throughout Childhood Cancer Awareness Month 2019 we shone a spotlight on the travel costs for families of children and young people with cancer. Since the launch of our campaign in 2018 another 4,450 young cancer patients and their families across the UK have spent an unacceptable total of £5 million simply travelling to and from hospital for lifesaving treatment.
On 9 October 2019 we wrote to Prime Minister Boris Johnson MP calling on him to implement a Young Cancer Patient Travel Fund and to tell him that now has to be the end of the road for travel costs.
Young people and their families have told us getting timely access to benefits should be a priority, and that the application process needs to be a lot more straightforward.
Benefits such as Disability Living Allowance (DLA) and Personal Independence Payments (PIP) are often a lifeline for families, providing some sort of income to help them cope with increasing costs and falling incomes. But these rarely help families cope with fluctuating or complicated circumstances.
Young people have told us the assessment process for PIP can be particularly difficult, with assessors often lacking the understanding and knowledge required to assess the impact of their condition.
We want the government to improve support for young cancer patients and their parents by making changes to the way PIP and DLA is currently accessed.
We know cancer costs. And the cost to young people’s mental health is no exception. Our Hidden Costs report reveals the impact on young people’s mental health, as well as their physical health.
Undergoing cancer treatment is gruelling, lonely and deeply personal. We asked 149 young cancer patients about the impact their cancer diagnosis had on their lives. Our report shows that young people with cancer are more likely to experience mental health issues such as anxiety and depression.
The impact cancer has on mental health should get equal consideration alongside young people’s physical health needs, so we make three recommendations for change:
- Access to evidence-based mental health interventions for young cancer patients should be part of the treatment pathway if needed, and provided consistently across the UK
- All UK hospitals should have free Wi-Fi access to enable young cancer patients to maintain the connections important to them.
Further research is needed on how young cancer patients are accessing services locally and the emotional and mental health impact of a cancer diagnosis on the wider family, particularly siblings.
Two in three parents are already in debt as a result of their child’s cancer diagnosis. It’s simply not right they should also have to worry about funeral costs as well, if the unthinkable happens. This is why we campaigned for the government to create a Children’s Funeral Fund.
We did this in collaboration with Carolyn Harris, MP for Swansea East, and Quaker Social Action, who directly support people struggling with funeral costs through their Down to Earth service and run the national Fair Funerals campaign to tackle the underlying causes of funeral poverty.
Since we launched our campaign, almost 2,000 of you contacted your MP about the need to create a Children’s Funeral Fund. And together, we made change happen!
- In November 2016 Carolyn Harris MP hosted the first debate in Parliament on the costs of children’s funerals sharing her own story after she sadly lost her son Martin and really struggled with funeral costs herself. Our research showed that many bereaved parents were struggling to pay for their child’s funeral and there wasn’t enough financial support there to help them.
- Young Lives vs Cancer joined forces with Carolyn Harris MP and other partners such as Fair Funerals UK, Coop Funeral Care and Child Bereavement UK and the campaign for a Children’s Funeral Fund gained momentum.
- In 2017, we launched an online campaign to ask supporters to email their MP calling for a Children’s Funeral Fund. Nearly 2,000 emails were sent to 86% of all MPs.
- In March 2017 Young Lives vs Cancer and Child Bereavement UK wrote to the Chancellor ahead of the 2017 Budget to ask for a Children’s Funeral Fund. In the same month, the Welsh government announced they would scrap children’s funeral fees.
- Following continued campaigning from Carolyn, at the end of March 2018, the Prime Minister announced that the Government would be creating a Children’s Funeral Fund
- The Scottish Government swiftly followed suit in May 2018 by announcing that across Scotland families will not be charged for burial and cremations of children.
- Delays meant that in 2019 there was still no sign of the Children’s Funeral Fund. Carolyn called out the Prime Minister on the lack of progress on this in May 2019 in a Parliamentary debate – she was supported by a joint letter organised by Young Lives vs Cancer and Co-op and signed by over 50 charities and cross-party group of MPs.
- Finally in July 2019 the Government announced the Children’s Funeral Fund would be available from 23 July 2019.
- In March 2022, a new fund was announced to help families in Northern Ireland to pay the cost of a funeral. The Children Funeral Fund will offer a one-off payment of £3,056 after the death of a child under 18.
As a result of your support, grieving families will no longer have the burden of paying for their child’s funeral when they are emotionally and often financially at rock bottom. The Fund will make fees for a child’s funeral free for families at the point of need and is not means tested. It is available to all parents regardless of their nationality, or that of their child as long as the burial or cremation takes place in England from 23 July 2019. Similar funds already exist in Scotland and Wales. This page will be updated following the publication of further information from the Government.
There is still so much more to do. Help us to continue fighting for change by becoming a campaigner.
We’ve also supported the Parental Bereavement (Leave and Pay) Act 2018, which will for the first time give all employed parents a right to 2 weeks’ leave if they lose a child under the age of 18.