Meet Lewis… a member of our Voice Board

Lewis is a member of our Voice Board, a group that brings together young people and parents/carers with lived experiences of cancer, who work together with trustees and staff to influence decisions made at Young Lives vs Cancer.

Lewis pictured here on the right with another Voice Board volunteer, Paul.

“My name is Lewis and back in 2016, just after my 17th birthday, I was diagnosed with leukaemia. In an instant, I had gone from being a perfectly healthy teenager to someone facing a life threatening illness.

Luckily I responded to treatment exceptionally well and within three months I was fortunate enough to receive a potentially life-saving stem-cell transplant, and that is one of the main reasons that I am still alive today.

Throughout my treatment and into recovery, my family and I received an awful lot of support from Young Lives vs Cancer; I was provided with social workers whom I worked with very closely on several different aspects of a cancer journey, including practical things like applying for grants and liaising with college so I was able to continue my studies.

Similarly, my family benefited from the charity through the use of their ‘home from homes’ which at the time were known as Clic Havens.

Even early into my journey, I knew that if my treatment was successful and I was going to survive, I would want to repay some of the immense kindness I had been shown by the multitude of cancer charities (inc. Young Lives vs Cancer) I had become involved with.

Initially, early in my recovery, this was through fundraising challenges that I completed, but more recently I have passionately volunteered my time with the charities and have become an advocate for young people with cancer.

Specifically, I volunteer with Young Lives vs Cancer as part of the Voice Board. The Voice Board is a patient/parent-led focus group which is a key part of the charity’s governance with the purpose of assisting Trustees and directors to make decisions informed by those with lived experience.

Through this enterprise, I have had the opportunity to be a spokesperson for recovering cancer patients by proactively and confidently sharing my experiences to aid discussions on a variety of different aspects associated with a cancer journey.

Central to these discussions are issues of strategic importance to the organisation, highlighted primarily by findings from previous/ongoing research and issues raised by Voice Board members themselves. Integral to the success of Voice Board is that it ensures that a diversity of views is consciously heard and represented in the organisation’s decision-making process.

It is this aspect of the Voice Board in which I feel I have personally benefited from proactively participating in the focus group.

This is because it has allowed me to develop my listening skills as I have heard and thoughtfully considered the perspective of others, particularly after hearing about the worries, concerns, demands of being a parent of a young person burdened with a cancer diagnosis.

Being simply a young person going through a cancer journey, these were things that I hadn’t considered in any great detail, because I had my parents to worry about that for me.

Subsequently, I feel that I have gained an even greater appreciation of the experience as a whole; not just the impact on the patient, but also the impact on their respective families, and all the associated difficulties.”

More about our Voice Board

At Young Lives vs Cancer, we’re passionate about making sure the voices of children, young people and families with a lived experience of cancer are at the heart of everything we do. In fact, it’s a vital part of making sure we’re meeting the needs of those we support and also helping to create positive change for young cancer patients in the future.

That’s why in 2023 we took the exciting step to create a Voice Board.  To ensure young cancer patients’ voices are not only heard but informing the work we do as an organisation.

Across the last 12 months, we have been working with an incredible group of 12 volunteers – six young people and six parents – who all have lived experience of cancer.

During this pilot, the Voice Board has been meeting quarterly to feed their insight and different perspectives into a number of agenda items, to help Young Lives vs Cancer’s Trustees and Directors to make decisions about the charity.  In particular the Voice Board have been integral in shaping our strategy and feeding into key areas of work, forming part of our governance.

This year we will be recruiting more Voice Board Members to join us, if this opportunity sounds interesting to you and you would like to find out more, please contact the Voice Team at: voice@younglivesvscancer.org.uk

Author: Rachel Gardner

Posted on Tuesday 6 February 2024

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