A year on the Young Lives vs Cancer Voice Board

It’s been a year since we launched the Young Lives vs Cancer Voice Board. The board is made up of 12 members – six young people (aged 16-24) and six parents/carers from across the UK. They are here to help Young Lives vs Cancer’s Directors and Trustees make decisions about the charity.  

After having experience of cancer herself, Emma joined the Voice Board to advocate for other young people facing cancer. After a year in the role, she shares what it has been like to be part of the Voice Board.

When did you first hear of  Young Lives vs Cancer before applying to be part of the Voice Board? 

My first introduction to Young Lives vs Cancer was during my time as an undergraduate at The University of Bristol. Bristol’s medical school performed a show each year to raise awareness and money for Young Lives vs Cancer. I had friends perform and I attended during my final year – it was one of the highlights of the year for everyone! 

I never thought, however, that two years later I would be the one being supported by this charity. I was officially introduced to Young Lives vs Cancer through my social worker whilst I was going through treatment.   

Young Lives vs Cancer have supported me in so many ways, so when the opportunity arose to volunteer in the form of the Voice Board, I felt compelled to apply.  

What drew you to applying for the Voice Board? 

I had wanted to volunteer to give back to Young Lives vs Cancer in some way for a while, the Voice Board drew my attention as it offered the opportunity to really influence decisions at the heart of the charity. I would be able to draw on my experiences to help inform how Young Lives vs Cancer can better support young people.  

What have you done to date in your role as a Young Lives vs Cancer Voice Board Member? 

I started my role on the Voice Board in February 2023. Since then, I have attended multiple Voice Board meetings, discussing a range of topics from the marketing of Young Lives vs Cancer, public engagement, key areas of patient support and up-coming campaigns. I had the opportunity in March to represent the Voice Board and feed back to the board of Trustees and Directors. We discussed the travels costs patients and their families face during treatment and the strategic direction for the future of Young Lives vs Cancer. This was a great opportunity to ensure the voice of patients and families is represented when considering the future of Young Lives vs Cancer and was an exciting and powerful personal experience.  

How are you able to use your own experiences in your role on the Voice Board?  

A significant strength of the Voice Board is the diversity of experiences and members. I have been able to learn from others, but also share my experiences to highlight where there are gaps in support.  

I frequently discuss the difficulties of having cancer as an adult in your early 20s and how often, we feel too old for teenage and young adult services but too young for adult services. Cancer in your early 20s also presents its own unique challenges, you have to make extremely difficult decisions regarding treatment plans – something you do not feel prepared or qualified for. This pressure at a young age can be extremely difficult to manage.  

In my role, I also bring the experiences of a chronic cancer patient to discussions. I flag the difficulties, both mentally and physically, that a chronic diagnosis brings. I’ve highlighted the fatigue in constantly juggling appointments across multiple specialities and spoken about the uncertainty of what my future entails and how this effects my decisions in life. I draw on this perspective to help shape our discussions on survivorship and what this looks like for young people.   

I also draw on my experiences as a young woman, who experienced significant medical gaslighting, to draw attention to these barriers in accessing healthcare. A common complaint I hear from the young adult cancer community is that ‘I was not listened to’. I now champion the importance of self-advocacy.   

Finally, I draw on my journey of infertility and menopause to ensure that this conversation is present and powerful during discussions. I personally found this aspect of my cancer diagnosis the most difficult to deal with and I am aware of the significant mental burden this has on young adults.  

What is your favourite thing about being on the Voice Board? 

My favourite part of my role on the Voice Board has been the opportunity to actively contribute in discussions to help shape the strategic direction of Young Lives vs Cancer. I feel like my voice is truly valued and it is great to work with a charity who are so invested in identifying innovative ways to support young people and their families.   

What has it been like to be a part of the Voice board with other young people and families who have had similar experiences? 

I have found collaborating with other young people and families extremely rewarding and eye-opening. Each individual Voice Board member has a unique story and I have learnt so much from others, particularly the experiences of parents. The Voice Board brings together a myriad of individuals from all over the UK, we are a real mixed bunch. Although our stories may differ, we have a unique bond in that we all have an experience with cancer. I have found that discussions at our meetings have aided me in my own journey and facilitated in healing and acceptance. To work with such inspiring people is such an honour and I have definitely made friends for life. 

What advice would you give to other young people and families wanting to share their voice? 

My advice would be to share your voice when you feel ready. I was unable to talk about my cancer diagnosis for years, but I now feel empowered to share my experiences – something that the Voice Board has helped me with. Cancer is an unpredictable journey and sharing your voice can be invaluable for both you and others, but it can also be difficult to readdress what was likely a traumatic time. If you feel like the time is right, look for opportunities to engage with charities and remember you can always share as much or as little of your story as you like.