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

11/20/22 • 42 min

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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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!

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?!

Previous Episode

40. Prof. Cath Crock - music in health care - our first international podcast guest!

My 1st international guest - Prof. Cath Crock, founder of Hush Foundation, Melbourne. Using music to bring kindness into health care.

Cath’s work is 100% in tune 🎹 with Whose Shoes, bringing creativity and humanity into health care. I met Cath through Bob Klaber’s monthly kindness sessions. Cath and Nicki Macklin from NZ are regular contributors, joining in the early hours!

Social movements for kindness in health care are growing internationally.

The Gathering of Kindness is an amazing line-up of international speakers, demonstrating how kindness makes a difference. Get involved!

Lemon lightbulbs 🍋💡🍋

We can get through these tough times if we’re kind to each other
Music makes health services more human!
The Hush Foundation in Melbourne sets a wonderful example!
If you feel uncomfortable with current practice, be brave to use imagination and creativity to find alternatives
Culture change can be difficult if people feel you challenge 'the way we’ve always done things'
Coproduction is key. Parent-carers notice areas for improvement that staff may not see
Difficult problems are solved when people come together!
Bring people with you, not confront them
Treat people as equals! #NoHierarchyJustPeople
Listening can improve patient safety
The big challenge in patient safety is how staff treat each – organisational culture
If staff don’t feel looked after, they don’t have capacity to go above and beyond or embrace anything new
People are generous with their time and skills when they feel they’re contributing to something meaningful. The benefit is reciprocal!
Respect patients’ time - not keep them waiting when they could do something more enjoyable
Encourage empathy. People feel differently realising these could be their own children
Plays help us understand patients can get substandard care if teams don’t work robustly together
Different art forms – plays, poetry - reach people in a different way to change practice
People can recognise themselves and vow to change their practice
If you change one person at a time, it’s like a ripple going forwards
The pandemic has brought new opportunities
It’s hard to be a lone voice for kindness. You become worn down by the system (structural unkindness)
We are making strong connections – globally!
You need a thick skin to ride the storm when creative, more human approaches come head-to-head with ‘old power’ 😬
Storytelling helps inspire others – lots shared in this podcast!
Start your own Gathering of Kindness! - join a ‘watch party’ to help you get started!
Shoutout to Cath’s wonderful parents. What a legacy! Kindness and music!
It‘s hard to say ‘no’ to things that bring you joy! 😉

Links and resources
Hush Foundation
Gathering of Kindness
The Obs Pod: Reading the Signals
Daniel, 15, is an upcoming singer-songwriter - his 1st song 'Day by day' describes Daniel's journey in hospital

Next Episode

42. Rachel Power - patients as equal partners in the NHS

Today I am talking to Rachel Power, CEO of the Patients' Association. Huge thanks to our mutual friend, Yvonne Newbold for introducing us!
The Patients' Association was established almost 60 years ago and is a membership forum - why not join?
Rachel is a strong advocate for patient partnership; her organisation is highly influential, helping patient voices be heard by NHS England and the government.
I'm hoping that this important conversation will form a bit of a 'pincer movement' with Episode 25, in which Miles Sibley, founder of the Patient Experience Library provides real evidence that 'patient stories' are not only important but should have equal weight with medical stories.
Lemon lightbulbs 🍋💡🍋

I joined the Patients Association! It's free! Why don't you?
Coproduction? Don’t get hung up on the latest buzz word – just think what the person in the street would understand
Focus on what is meaningful to people – e.g. Andrea Sutcliffe's 'The Mum test'
Let’s not measure things just because they are easy to measure
Measuring the impact of things that matter can be hard
People have survey fatigue - be imaginative about seeking feedback
- e.g. ask people in 6 months' time whether your intervention made a difference
BRAN - the 'Benefits, the Risks, the Alternatives and the do Nothing' methodology is powerful
“If I still can’t do my gardening, then why would I want that knee operation?”
- a classic example of 'What Matters To You?' #WMTY
Seek to identify and overcome the barriers to shared decision-making
Most people just want to know that things will be different; they don’t necessarily want to complain
Let’s keep things simple; not over-complicate!
Always remember - behind the statistics, there are human beings
Patient stories should have equal weight with medical stories (Miles Sibley)
The Patients’ Association works closely with the NHS - help them!
Digital solutions sometimes exacerbate health inequalities - be inclusive and imaginative
Bring things to people and making them accessible - Nailsea is a good example
The cost-of-living crisis is widening inequalities
The Patients’ Association has lots of practical resources to help people access health care and feel empowered, including a Helpline
Our key message for Amanda Pritchard, CEO of the NHS – patient partnership is the way forward!

Links and resources
The Patients' Association
Miles Sibley, Founder of Patient Experience Library
Yvonne Newbold - Founder of Newbold Hope

Wild Card - Whose Shoes? - 41. Lesley Goodburn - #SethsLegacy. Raising awareness of pancreatic cancer

Transcript

Gill Phillips 00:10
My name is Gill Phillips and I'm the creator of Whose Shoes, a popular approach to coproduction. I was named as an HSJ 100 Wild Card and want to help give a voice to others talking about their ideas and experiences. I'll be chatting with people from all sorts of different perspectives, walking in their shoes. If you are interested in the future of health care, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes