When reading about your work, it surprised me that there are only 19 specialist cancer treatment centres for young people in the UK. Why do you think there is a major lack of awareness and funding for young people with cancer?
Thankfully, cancer in young people is rarer, but when it happens that doesn’t make it any easier for the person going through it. In our report ‘The Cost of Waiting’, we found that families in the UK spend an extra £750 a month when a young person is diagnosed on average, with £250 making up travel costs. In Scotland, this statistic is likely higher, considering there are greater travelling distances. On a macro-level, the lack of funding comes down to numbers and costs for the specialist treatments, but that doesn’t make it easier for anybody. For anyone who doesn’t live within a short drive of the treatment centres, it can be a real challenge, making time and cost the main barriers for young people with cancer and their families. Many people don’t think about this, but when you’re emotionally drained, even a daily forty minute drive is going to be exhausting.
A lot of young people may not consider the likelihood of cancer while navigating life changes such as leaving school and applying to university, or working new jobs. How do you challenge the stigma surrounding cancer in young people?
There’s not so much a stigma about negative thoughts or reactions towards young people with cancer, but people don’t think about cancer in terms of it happening to them. We try to focus on diversity, whether that’s sexual orientation, gender identity or family circumstances, ensuring we have a person-centred approach. Everything’s tailored to the person and the support they need, as is reflected in our literature and visuals.
One of your core principles is that you help young people with cancer ‘thrive, not just survive.’ In what ways do you help young survivors of cancer realise their ambitions, both during and after treatment?
One of our key messages is that a cancer diagnosis is more than medical: don’t get me wrong, the NHS is great, but our focus is on the emotional, practical and financial. Financially speaking, we have grants that we can offer and also signpost our social workers to help with benefit grants and collaborate with other charities: that’s their bread and butter. As for the practical, this includes taking time off college or university, returning back to these institutions and providing information to schools about how to talk about cancer. Finally, the emotional is mainly about offering a listening ear: we have several written resources including storybooks, all written in accessible language that a young person can understand. It’s about helping people understand cancer in a non-technical, non-medical way.
I really like how Young Lives vs. Cancer has a ‘voice hub’ project in place. Why is it so important for young people with cancer, as well as their loved ones, to engage in dialogue?
Anybody can sit and listen or read reports, but it’s the people with lived experience who really understand. For example, someone may be entitled to benefits in theory, but in reality they have to wait for months. In reality, they have to fill out a massive amount of paperwork when their head’s already all over the place. From an outsider perspective, people are seeing a person who is unwell and thinking purely about the medical, but the practical and financial aspects don't stop. Not only do people have to travel to and from hospital, but when they’re there, they may spend a fortune on food and need assistance. This space is dedicated to young people with cancer and their close families, who know the nitty gritty and the barriers they’re facing, and know what they need to create a better experience.
For those who aren’t battling cancer or haven’t had any kin affected by it, what are some actions people can take to improve their awareness of cancer and the range of people it affects?
Reading resources is a helpful starting point, but we also have many opportunities to get involved and volunteer. This can be a good way to naturally have a conversation with people who work in the field or are directly affected. A lot of our volunteers are people who have been in the same circumstances, who will often talk about their experiences. It’s also important not to be scared: some people are so afraid of saying the wrong thing that they don’t engage much with people going through treatment, but speaking on a personal level can be really helpful. Even asking basic questions such as ‘what do you want to talk about?’ or ‘what can I do to help?’ are great. You don’t need to interrogate anyone, but allow a conversation to happen and make it clear you are there for them.
Do you find the general discourse around cancer victimising? How do you empower young people with cancer as individuals rather than patients?
We aim to frame all our communications through the eyes of the people whose stories we are sharing. So the stories are never all about cancer - because the people we support are more than their diagnosis. We use positive language in our communications, and we like to use direct quotes from children and young people so we are truly reflecting their story in their words. And when we’re speaking with children and their families, a lot is about good listening skills, and using language they are comfortable with. For example, some people are very direct when speaking about bereavement; and others prefer softer language.
Among your long term ambitions, you aim to achieve the North Star vision, which would fundamentally change the cancer system in the UK. How do you plan to improve cancer care for young people in the next few years?
The North Star consists of us and three other cancer charities (Teenage Cancer Trust, The Children & Young People’s Cancer Association and Ellen MacArthur Cancer Trust) who are campaigning for systemic change. Although we all deal with a slightly different demographic, we fundamentally agree on the barriers young people with cancer face. It’s a case of trying to lobby at a government level for policy change in terms of benefits and cancer plans, so that the experience from diagnosis is as non-bumpy as it can be. However, there’s still quite a lot of issues that come up regularly: young people often go to the doctor several times but are told they’re still young, or are experiencing growing pains. It’s difficult because in the vast majority of cases it is, but when it’s not, time is incredibly important and they need to be taken seriously. There’s also the post-COVID challenges in the healthcare system that have created additional barriers. We’re trying to get the system better so that people are engaged with their doctors when getting referrals to hospitals, and then having to apply for benefits. We want the process to be more streamlined and less bureaucratic, so that it’s quicker and more efficient.
GCFS endeavours to raise as much as they can for Young Lives vs. Cancer this year. What would this funding mean for the charity?
As much as our social workers are based in hospitals, we don’t receive any NHS or government funding: every penny that we need is raised by fundraisers. It can be difficult to raise money, so having a solid form of income is incredible. The fashion show would help give certainty to our funding in Glasgow, which is fantastic!
To end on a positive note, what are you most excited about for the Young Lives vs. Cancer x GCFS partnership?
What we’re particularly excited about is the demographic: of course there’s students beyond 25, but most students are in the 18-25 group that can struggle to get a bit of headway and knowledge around cancer: the opportunity for GCFS to wave the flag with that group is fantastic! It’s also great to be drawing attention to our work in Glasgow: Marion’s House is quite tucked away and most people don’t come across it until they have to. We’re really happy that students in Glasgow can learn about these resources and feel a sense of connection to our work. Not only will students know about our resources if they or a loved one is affected by cancer, but they will feel more confident speaking about it. I’m also very excited about the media coverage and to meet new people, as well as GCFS meeting our social workers and staff. Of course, cancer is incredibly difficult, but the positive energy I’m already feeling will help to break down many barriers!
Donate to Young Lives vs. Cancer today: https://www.younglivesvscancer.org.uk
Read the full report ‘The Cost of Waiting’: https://www.younglivesvscancer.org.uk/wp-content/uploads/2025/02/25012_YLvC_TC_Report_A4_DOWNLOAD_AW.pdf
Image credits: Young Lives vs. Cancer
