Reflections on eight years as a trustee at Young Lives vs Cancer

Back in 2016 I was planning towards retirement from my post as Lead Nurse for Children’s Cancer in Leeds. I wanted to find ways that I could use my knowledge and experience to continue to make a difference to children, their families, and the services which looked after them.

Becoming a trustee, and joining the Board of what was then CLIC Sargent, was a great opportunity for me to do this, as I knew from my own experience how vital the work of the organisation is. I have been a trustee for almost eight years now, and contributed to some of the changes which make this such a brilliant charity today – including the change of name to Young Lives vs Cancer.

One of the really positive changes I have seen over that time is in the way  we listen to the voice of children, young people and families we serve, and amplify that voice through our campaigning work.

Every child and young person with cancer, every family, has their own unique experience, and I learnt in my own career how much we can learn when we just stop to listen, to really hear what they have to say.

That experience, that voice has to be at the heart of what we do. Working out how we truly hear, value and respond to the lived experience of those we serve has been a challenge that the Board, and the organisation has recognised and responded to over recent years.

As a Trustee, I have been privileged to play a part in the development of the Voice Board as a key element within the governance framework of the organisation. Our Voice Board brings together members of our community with lived experience of cancer to help drive what we do as a charity. It is nearly two years since the first representatives  attended a meeting of the Board of Trustees, to give their feedback on work being undertaken on our brand and on  developing a new organisational strategy.

The impact on Trustees was immediate, to hear with such confidence and clarity from two young people who shared their insights into our work from their own lived experience, and were able to reflect so effectively the views of other members.

Since that time, the Voice Board has been instrumental in the strategy development work that has resulted in our North Star vision of the world we want to see for children and young people with cancer and their families.

They have provided great input into a range of organisational priorities with representation back to  the Board of trustees following each of their own Board meetings. Myself and other trustees have been warmly welcomed into meetings of the Voice Board, and hugely impressed by the commitment shown by members to the work, and the sense of shared purpose that shines through the diversity of experience in the room. The richness of the feedback they provide ensures that this lived experience informs Trustee Board discussion and decision making.

This was reinforced recently by powerful feedback on a discussion about our organisational values, and the critical importance of the language we use together. This will be fundamental as we plan for the first joint in-person workshop session which will bring together the Board, and the Voice Board at the end of this year.