41. Lesley Goodburn - #SethsLegacy. Raising awareness of pancreatic cancer

Wild Card - Whose Shoes?

So today I am fulfilling a pledge. If you look at the Purple Rainbow website, you can make pledges #SomethingForSeth, as part of the legacy for Seth Goodburn, who sadly died of pancreatic cancer in 2014.

My pledge was to invite his wife Lesley to share the story on the podcast, and I am delighted to do so today!

Lesley has done extraordinary work to raise awareness of this cruel disease and help so many other families going through the same experience.

This is my first ever one-to-one conversation with Lesley – I hope you enjoy it!

This is a story of love and humanity, fundraising, connections, supporting improvement through narrative, including storytelling, and also making a play and a film. As you can hear already, So much synergy with my Whose Shoes work.

Lemon lightbulbs 🍋💡🍋

• Hopes and dreams are shattered by a terminal diagnosis. Human beings are involved.
• The prognosis for pancreatic cancer has hardly improved in 50 years
• Pancreatic cancer is hard to diagnose - don’t ignore symptoms, get checked out
• A breakthrough is near – but it costs money to make progress!
• Let’s close the gap between the theory and the practice. If you ask patients and family carers to say what matters to them … make sure you are listening
• In patient experience, often the effect is cumulative,. You need to listen from the start.
• People affected by adverse outcomes are PHENOMENAL in reshaping their lives and goals to help others
• The Hope Network (Heads of Patient Experience) are a fantastic network for quality improvement
• We all need hope.
• Adversity helps us discover what we are capable of – fundraising, advocacy, taking part in research and more
• Homeward Bound – creative methods such as making a play or a film can be powerful
• People can feel guilty surviving when others don’t
• Peer support - using your lived experience to help others
• Let’s connect …Yvonne Newbold …Sarah Land - also helping others through their lived experience!
• Storytelling! And a shoutout to Miles Sibley, founder of the Patient Experience Library
• And Cath Crock and the Hush Foundation!
• And Nicola Enoch, founder of Positive about Down Syndrome
• Listen to what is important to someone. It might be as simple as a cup of tea – but would you want it cold and milky when you have always liked it hot and strong?!

Links and resources
Purple Rainbow website - listen to podcasts exploring pancreatic cancer
Make a pledge: #Something4Seth
Yvonne Newbold - Founder of Newbold Hope
Sarah Land - Founder of Peeps HIE charity
Miles Sibley, Founder of Patient Experience Library

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