Ceinwen Giles' Story

Author: Ceinwen Giles
Ceinwen Giles' Story

Ceinwen travelled to the USA and Canada to explore innovative support for young adult cancer survivors. Read about some of the ideas she has implemented in the UK.

The Fellowship

Ceinwen travelled to the US and Canada in 2013 to meet with organisations that are providing innovative forms of support to young adults with cancer. Diagnosed with Stage 4B non-Hodgkin lymphoma herself in 2010, Ceinwen became very aware of the lack of specific support available to young adults with cancer. Although the UK has many cancer support services available, most of them either implicitly or explicitly support much older (65+) or much younger people (children and teenagers). Ceinwen was interested in learning from the young adult cancer movements in the US and Canada about the specific issues facing young adults with cancer, as well as successful interventions to support those young adults.

Ceinwen visited organisations in New York, Newfoundland, Toronto, Vancouver and Denver. The organisations visited were diverse in terms of their areas of expertise and their approaches. Key themes quickly emerged, particularly around the need for information on specific topics such as employment and fertility, as well as the value of bringing young adults with cancer together to share experiences and build communities of support.

The Results

Since she returned to the UK, Ceinwen has put a lot of what she learned into practice. As a founding Trustee of Shine Cancer Support - which focuses exclusively on providing support to adults in their 20s, 30s and 40s with cancer - she worked with a Steering Committee to develop Shine's 2014 Great Escape. The Escape was designed to provide a way for young adults to get together for three days, have fun, and get access to information on specific topics that are important to them. The Escape was held at the end of January 2014 and was attended by 20 young adults with cancer; some were in active treatment, some were in remission and some were living with incurable disease.

Ceinwen's Fellowship allowed her to ensure that the right forms of support were in place for everyone, that the weekend left people feeling supported (rather than depressed), and that the variety of experiences of living with cancer were catered for. Evaluation of the Escape showed that everyone who attended rated the overall experience as "excellent" and many of the "Escapees" are now in touch with each other regularly, providing the type of peer-to-peer support that Shine believes is vital for young adults.  In 2015, Shine ran the Escape for a second time and plans to make it an annual event. Ceinwen remains in touch with some of the people she met on her Fellowship, many of whom continue to provide important advice and support to Shine's work.