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.
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’ve been campaigning for the government to create a Children’s Funeral Fund.
We’ve been doing 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 March 2017, the UK’s leading national funeral provider, Co-op Funeral care, announced that it will extend its free child funeral policy to include 16 and 17 year-olds.
- The Welsh Government announced that bereaved parents will no longer have to pay burial charges for children in Wales.
- In November 2017 the Department for Work and Pensions committed to making improvements to the Social Fund’s Funeral Expenses Payment Scheme to help those accessing the scheme for financial support for children’s funerals
- Finally in April 2018, the Prime Minister announced a Children’s Funeral Fund for England where parents will no longer have to pay for burials or cremations
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.
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.
Everything you need to start fundraising for CLIC Sargent, from sponsorship forms to posters to fundraising ideas.Read more about Fundraising materials
Research projects which aim to improve the lives of young cancer patients and their families.Read more about Research