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Co-leadership: A Patient's Perspective

Charlene Young is a bone cancer survivor, who co-lead a short filming project along with Kelly Kohut (WP4). This project was concerned with the lived experiences of being affected by cancer in the black African/Caribbean communities.


I am a bone cancer survivor and patient advocate who is passionate about supporting cancer patients, particularly those facing health inequalities. I was invited by Kelly Kohut to co-lead a short filming project on the lived experiences of being diagnosed with cancer or having a family history or being a family member of cancer, within black African/Caribbean communities.

Kelly is a Genetic Counsellor and a PhD student. She is currently co-designing a patient website for Lynch syndrome, which is a genetic condition that gives people a higher chance of getting bowel and certain other cancers. The website will also include short videos and information on other types of cancers.

The 3-hour filming took place in July 2023 at Jul's The Hair Klinik, in Mitcham. The cancer patients who attended, filmed their lived experience of resilience, trauma, strength, and hope. Each showcased in their own authentic way reminded me of how we individually deal with a cancer diagnosis differently but also share so many common themes of being in denial, and feelings of loneliness, and isolation.

(Picture: Charlene and Kelly)

The key discussions were on:

· Life before diagnosis

· Diagnosis and treatment

· Feelings associated with a cancer diagnosis

· Survivorship and raising awareness

What stood out for me the most was the similarities within the prostate cancer stories, which had me questioning what I could do more. According to Prostate Cancer UK 1 in 4 black men will more likely get prostate cancer in their lifetime. This had me thinking about what I can do to encourage and work more closely with black men within my community to share their stories, how to support them to advocate for their own health and speaking out on cultural taboos.

After filming we were joined by Lee Townsend, who is very well known in South London for supporting cancer patients with their community projects through Macmillan.

This filming event was incredibly inspirational and highlighted the importance of patients being the driving force of co-leading and having these conversations in locations where communities feel more comfortable. This is exactly why I got involved.

I want to say a huge thank you to Kelly, the filming crew, Julien for hosting us, all the patients who attended and shared their stories, Lee Townsend and the funding support from Southampton University.

(Picture: Charlene, Kelly, Lee and Julien)


Written By: Charlene Young


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