Diagnosed with Stage 4 diffuse large B-cell lymphoma, a highly aggressive form of blood cancer, in 2010, just six weeks after giving birth to her premature daughter, Ceinwen was given a 40% chance of survival. She then spent six-months undergoing high-dose chemotherapy as an inpatient in an isolation ward in a London hospital. Currently in remission, she still receives monthly infusions to cope with the life-long consequences of her cancer treatment on her immune system.
While the treatment and care she received from the NHS saved her life, her experience of the health service, and in particular the services offered to younger cancer survivors, convinced her that things should and could be better. As part of her own experience of recovery, Ceinwen discovered that post-treatment support was mainly aimed at older people and children, and that there was no advice or support that catered for the unique problems that younger survivors face, such as returning to work and professional life, fertility, sex and relationships. At the same time, she became convinced that only by involving patients in the design and delivery of health care could you truly improve the experience of patients going through the health system.
As a result of her experience, Ceinwen co-founded Shine Cancer Support, the only charity in the UK which focuses on providing information and support to adults in their 20s, 30s and 40s who have experienced a cancer diagnosis. Collaborating closely with her co-founder, Emma Willis, and drawing on her experience from her earlier career in international development, Ceinwen has grown Shine from a small informal support group into a national charity that supports thousands of adults across the UK. She has pioneered the development of the UK’s only national cancer conference for adults in their 20s, 30s and 40s, as well as designing and implementing a huge range of supportive activities including retreats, coaching and specific workshops for Shine’s beneficiaries.
In addition to her work with Shine, Ceinwen works as a patient activist, seeking to ensure that the design and delivery of healthcare is patient-centred, and that it meets both the physical and psychological needs of those who come into contact with the healthcare system. She is a Trustee of the Point of Care Foundation, a member of the British Medical Journal’s Patient Panel and a member of the General Advisory Council of The Kings Fund, an internationally leading healthcare think-tank.