Wild Card - Whose Shoes?

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

• Gill Phillips @WhoseShoes

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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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I tweet as @WhoseShoes and @WildCardWS and am on Instagram as @WildCardWS.

Please recommend 'Wild Card - Whose Shoes' to others who enjoy hearing passionate people talk about their experiences of improving health care.

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 - Wild Card is for you.

Gill Phillips  00:40
So today, I am fulfilling a pledge. If you look at the Purple Rainbow website, you can make pledges at #Something4Seth, 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'm 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. I have so far only ever talked to Lesley through our shared interest in improving patient experience through coproduction. I was invited to present at one of the NHS England experience of care sessions as part of Lesley’s wonderful Hope Network. This is my first ever conversation one to one with Lesley. And I'm really looking forward to 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, there's so much synergy with my Whose Shoes work. So welcome to the Wild Card - Whose Shoes podcast Lesley, we're looking forward to hearing more about you and your beautiful relationship with Seth. And what you're doing to keep his memory alive and add so much purpose to your own life too

Lesley Goodburn  02:10Well, it's really good to meet you, Gill. Well, meet you virtually rather than face to face. It would be great to be in a room. But it's really good to have this opportunity to share my experience, Seth's experience, how it links to purpose and how it links to the work that I do voluntarily and professionally.

Gill Phillips  02:32
So it's a big story. Lesley? Where would you like to start?

Lesley Goodburn  02:36
Yeah, if I start with Seth, maybe. Seth was a kind, curious, generous, loving man. But I would say that, because I'm biassed we were married for nine and a half years. We married a little bit later in life. It was a second marriage for me. The first one for Seth. We had this lovely relationship where we were kind of open and honest. It was very much based on humour and practical jokes and understanding each other implicitly. Life was wonderful. We’d done lots of travelling, we'd booked a trip of a lifetime to China, Hong Kong and Singapore for our 50th birthdays that were coming up in 2014. It was going to be our 10th wedding anniversary. So the idea was that we'd go off to China, do the Great Wall, Terracotta Warriors, pandas at Chengdu, go down the Yellow River, end up in Hong Kong, come back through Singapore and just have a wonderful time. And that was all booked six weeks before Seth started to feel unwell. So for a little while he'd he'd been a little bit odd. His demeanour had changed. He wasn't quite so jokey or so funny. He was tired a lot. He seemed quite depressed. But he was coming up to 50. And he knew that the job that he did in the utilities company was going to be outsourced to India. So he knew the following summer he was going to be made redundant from his job. So I kind of put this change in demeanour down to the fact that he was coming up to 50 and perhaps didn't want the stress of changing jobs. But as it turned out, actually, some of the lethargy and some of the change in demeanour and the depressed mood, were actually hidden symptoms of pancreatic cancer. So from September 2013, through to his diagnosis in May 2014. there was just an oddness about Seth, a strange distance between us. A slightly depressed under the weather person, which I put down to the fact that he was about to be made redundant. In April 2014, towards the end of April, he got really breathless. Went to the doctors. They gave him steroids, antibiotics,, thought he'd got a chest infection. He got a little bit better. And then in May, he deteriorated again. He went to work on Monday, got an emergency doctor's appointment on the Monday evening, was referred directly to A&E, got a scan having been admitted overnight. And the next day he was told he'd got late stage pancreatic cancer, and he'd got days maybe weeks to live. So other than these symptoms that he'd got that I put down to change of life, change of job, coming up to 50. There wasn't really anything that kind of jumped out until a couple of weeks before the diagnosis where he got back ache, he was struggling to eat, he had indigestion, he had real intense pain in the middle of his back. But he thought he’d pulled a muscle mowing the lawn. And that's pancreatic cancer, really a disease that is really, really vague. That doesn't necessarily always manifest in explicit symptoms. Often it's kind of indigestion, backache, lethargy, weight loss, or feeling unwell, maybe change in bowel habits, but it's different dependent where it is in the pancreas as well. So depening on where the tumour grows, the symptoms are different. One in four people diagnosed with pancreatic cancer, sadly dies within a month. Three out of four people die within a year

Gill Phillips  06:30
it is really shocking, isn't it?

Lesley Goodburn  06:32
Absolutely. 45% of people are diagnosed at A&E. Because in the kind of average lifespan of a GP, they may diagnose one person with pancreatic cancer. It's so rare to actually get the diagnosis at primary care, because the symptoms are so vague. And people tend to go to and fro to the GP between 6 and 10 times before they actually get a referral to secondary care.

Gill Phillips  07:04
Are those statistics changing at all?

Lesley Goodburn  07:07
That’s not changed in 50 years, sadly, Gill

Gill Phillips  07:10
That's what I thought. Yeah. And obviously, that's where your work comes in and Seth’s legacy and, the fantastic raising awareness

Lesley Goodburn  07:19
There down at the bottom of the pile in terms of cancer survival rates, nothing really has changed, like half a percentage point in 50 years. So there's a real struggle out there to get healthcare professionals to recognise these vague symptoms and kind of link them together. So I don't want to frighten people and make, people think that if you've got indigestion and backache, it's pancreatic cancer, because it probably isn't. But if there's something wrong with your digestive system, and you're feeling tired and depressed, and you've got backache, and it doesn't really go away with normal treatments, then it's worth going to the GP getting checked out. For every 10 people diagnosed, one person gets the chance of life saving surgery, which is the only way of curing pancreatic cancer. Seven and 10 get no treatment whatsoever, and the remaining two probably get palliative care. So that's how dire the statistics are.

Gill Phillips  08:24
And I know I looked at your Purple Rainbow website and all the fantastic work you've been doing. And I was interested in that in terms of although it's typically, sadly, such a short journey, the different people in terms of the family carers, the wives, the spouses, and so on. But there is still the variation between people at different stages of that journey and how it feels to be perhaps the one that survives or, you know, I think with anything, it's a case of differentiating, isn't it and finding what matters to that person personally.

 Lesley Goodburn  08:59
Yeah. And part of the struggle with the diseases that people kind of get a diagnosis, look, look on Google and get all those dire statistics. There is lots of research going on. And we're close to a breakthrough, we think on a number of fronts, from biomarkers from your in from blood tests from vaccines, where we're getting close to something that will give us a breakthrough. But to be able to get that breakthrough, we need to raise money for investment in research and part of the vicious circle that we can't really break is that it gets a minimal amount of funding compared to other diseases, cancers like breast cancer and colorectal cancer, where over the last 20 years they have made breakthroughs because of that investment. And then we also have the issue of young researchers not necessarily wanting to go into pancreatic cancer research because there isn't the investment so yeah, you have ended with this vicious circle of no improvement. But for people diagnosed you know, the journey is often short. It's it's traumatic for the person who's diagnosed and for the family who, who get this shock diagnosis like Seth and I got so he was at work on Monday at 430. feeling unwell by Tuesday at 430. He was told he was dying and he got days maybe weeks to live.

 Gill Phillips  10:29
That's so shocking. But it is good to hear that there's hope because I didn't really know that and is that where the hope network? Is that where that? No, that's,

Lesley Goodburn  10:37
That’s completely separate. That's okay. So I've got I feel like I've got two parts to me. I've probably got three actually.

Gill Phillips  10:45
But I think you've got several ….

Lesley Goodburn  10:46
There is Lesley the person. There's Lesley, the wife of Seth, who died from pancreatic cancer, and the voluntary work that I do. And then there's the work that I do at NHS England in a paid role, which is around experience of care. So Lesley, the person loves to read, do history , loves a lovely little dog called Gertie, who's a Staffordshire Bull Terrier, who's a cross between an angel and a demon depending on the day.

Gill Phillips  11:18
I've seen some of your tweets about Gertie . Gertie tweets!

Lesley Goodburn  11:25
Yeah. Yeah, she's delightful, but demonic as well, As Lesley, who does this work around pancreatic cancer, psychosocial support for people who are diagnosed with this late stage diagnosis and a short prognosis, and improving end of life care. And that really came from working in the NHS at the time Seth was diagnosed, being a reasonably articulate, assertive, vaguely knowledgeable person around the periphery of the NHS system. And, you know, getting up every day and the role that I did then, which was in a commissioning support unit, supporting Clinical Commissioning Groups, and running workshops and working with people with lived experience and saying, “share your experience with us because we want to improve things. It's really important that we hear what you've got to say, that we work together that we listen that we work with staff” But then what happened was Seth got this diagnosis and all these things that I talked about, about family and person centred care, didn't seem to apply to Seth and me. So the fact that he got a diagnosis that was terminal, and it was pancreatic cancer, and there isn't always a great deal of hope. There was this kind of mixture between being told the news and it felt like everybody walked away from us, it felt like there was an element of nihilism, really. And then, as we went through the journey, Seth and I were really clear that he wanted to die at home. But despite our best efforts, the system took over. So when Seth deteriorated and there was a buildup of fluid in his abdomen, he needed to be admitted to hospital to get that drained because it couldn't be drained at home. And once he was in the hospital, it was almost impossible to get him out. Nobody really listened. Nobody really talked about what we wanted. I talked to the hospital about a phlorex catheter that would drain the fluid at home. They said no, I quoted NICE guidance. They said no. Eventually, they said yes, but we didn’t have community nurses available to administrate. I said, “train me”. But by then 10 days had slipped by, Seth was actively dying, and it was actually too late for a phlorex catheter. So sadly, Seth ended up dying in an acute hospital when he wanted to be at home. Because the weight of the system and the processes just subsumed us. And despite as I say, being reasonably articulate, reasonably assertive, and reasonably intelligent, when you are given that news, all that just disappears away, and you rely on the system to support you. But actually, it couldn't. So after Seth died, I'd kind of sat for days by his bedside watching him die. And just kind of thought, people have to know what it's like to be Seth and to be me in this situation, and there I came up with these three things that I was going to do. Afterwards, I was going to raise awareness of the signs and symptoms of pancreatic cancer. I was going to help people understand what it's like to get a late stage diagnosis with a short prognosis, and the psychosocial support that you need to be able to deal with that both as a carer and a patient and the person who's dying and to improve end of life care. So six months after Seth died, I got his medical records, I sat down in a room for a week, I went through them, I started to write down what happened on each of the 33 days from the point of his diagnosis until he died. Just to make sense of it, because I was traumatised by what had happened. I couldn't believe that six months on Seth had disappeared in 33 days. And what I found myself doing at that point in time was writing letters that accompanied the journey that were to various healthcare professionals saying what it felt like to be me to be Seth or to be both of us on certain of those days. So I ended up with a kind of folder that was the journey of what happened on each of the days and 17 letters that were in envelopes that articulated what it felt like. So I shared those with the Clinical Commissioning Group who commissioned the care and the hospital that provided the care and said, you know, this isn't about the work that I do. This isn't about what I do professionally. This is my experience of accompanying my husband through diagnosis to death. These are all the issues around compassion, person-centredness, family-centeredness, support, what can we do as a hospital or commissioner and a carer to improve things. There were many, many good intentions, but sadly, eight months after sharing that, no one came back to me and nothing changed. Which was when I then worked with the National Council for palliative care, which eventually were subsumed by hospice UK. And we worked together with a playwright to take the journey on the letters. And that's how the film and the play came about the play was called Homeward Bound. We've launched that in 2016, worked with lots of hospitals and organisations to share that at end of life conferences and improvement conferences. And then through 2017, in partnership with Leeds Teaching Hospitals, NHS England, St. Giles hospice, the National Council for palliative care, and pancreatic cancer UK, turned Homeward Bound the play into a film, so the film made it more accessible. And we developed an educational resource and the three purposes, which was raise awareness, psychosocial support, and improve end of life care, drove that film. And in 2016, I, I left the NHS, because actually, I'd stood up every day and said, Please share your experiences, please tell, tell me what it's like, because we want to improve things. And then when I shared my experience, nothing really changed. So I went and did some work separately from the NHS, around improving end of life care and signs and symptoms. And then kind of got to the point where this woman who stood up in front, playing the film at a conference and talked about Seth and what happened, this woman who was there didn't feel like me any more. It felt like it was a version of me that was just talking about what happened to Seth. And I felt like I was actually losing my connection with Seth. So I decided that I couldn't do that anymore, and took a temporary job with NHS improvement, doing work with providers around improving experience of care. And then through the merger with NHS England, and improvement took on a substantive posts to continue to do that. So since 2018, I've worked in the national experience of care team doing that work, it's really important to me to do that work with providers who deliver point of care experiences. And you mentioned the Hope Network earlier. The Hope Network is the heads of patient experience network that is funded by NHS England, and I with others in the team lead that network to bring together the people who lead on experience of care patient experience stuff, experience in hospitals, and other organisations because we've got a big band of people now in that network. So it started off in 2020. At the start of the pandemic with 250 members, we've now got 760 members. Not all of them are from hospitals, but it brings together a network of people who work in ambulance trusts, acute hospitals, community trusts and mental health trusts, to really share the work that they do to learn from each other. And we meet every two weeks online, we do monthly webinars, we do quarterly meetings, we've got meeting tomorrow. And we support things like experience of care week, which is in April next year. And it's just the most wonderful network of people who care passionately about people's experience of care, whether it's patient experience, staff experience or carer experience. They're wonderful people who support each other to improve things. So that's where the kind of open network comes from, from a professional rather than a voluntary.

 Gill Phillips  20:44
And what a fantastic name because we all need hope, don't we, that is the thing that runs through, you know, there'd be nobody in the world who doesn't need hope, and to have a Hope Network with all those amazing people. Lesley, that is the most incredible story. And I've got so many thoughts going through my head, and I'm thinking, I've just got this picture of an iceberg in that, however much you get to know somebody a little bit, and you get to know aspects of their story. And obviously, to prepare for today, I've tried to find out what I can in terms of the Purple Rainbow website and the work and Seth’s legacy and so on. But to hear somebody firsthand, telling that story of how it fits together, and you know, your professional work and your personal work and the different aspects of you, the person, which can get lost sometimes can't it when you know, something like Seth’s, legacy, if that's what people know about you. Obviously, that would never have discovered any of that if you hadn't had this terrible experience. I think the things that really jumped out for me were the courage really, and the tenacity and the emotion it must have taken to go back over that awful story, but to take the time and the love to recall it day by day by day, in terms of how that felt for you and how that felt for Seth. So often we get the summary, the high level of stuff, don't we, but to go through something and it wouldn't just be the separate days, it would be how one thing links to the next and the ripple effect. And you know, the fact that they said no at that point and time's going by and the one thing you really didn't have was time. And then, it's depressing, really to hear buth it's the pattern, isn't it really, that sometimes like good intentions, and people are busy and  perhaps it's not their number one priority, it's your number one priority. To turn that into the kind of legacy that you've made for Seth, I'm sure it needed you personally to do that. Because that investment you've got in him and in your story. And to know, all that detail in terms of how things could be different day to day. And I'm just in awe of you really, I think it's an incredible story. And you've done … you know, he'd be so proud of you.

 Lesley Goodburn  23:03
Yeah.

Gill Phillips  23:03
And I think we all are.

Lesley Goodburn  23:03
And it kind of you know, it started a few weeks after Seth died, I was determined to do something, I didn't know what I'd got those three things in my mind. So I decided that I would support pancreatic cancer UK. And I particularly picked that charity not because they supported me because actually, I never got the chance to contact them and benefit from all the wonderful services that they've got. But they run a specialist nurse support line for anyone who's diagnosed with pancreatic cancer, or any family member. So these are nurses who know this disease. Inside and out. It's not not a nurse, it's a specialist nurse. So they, you know, support people with the support line, they kind of lobbying campaign. They also put money into research. So I was determined to raise awareness. So I decided that I would try and raise 1000 pounds for each year of Seth's life. And raise 49,000 pounds was the idea, which seemed like a good idea at the time, something to reach for. And so, you know, I talked about going to China, this planned trip to China, so 15 months after Seth died. And as you can probably see, and anybody who kind of looks on Twitter or sees my profile will see that I'm not really built for tracking the Great Wall of China. But I did a sponsored track across the Great Wall of China in memory of Seth to raise some money, which was, which was a little bit of a little bit of a stretch for me, I have to say, but I did it. And when I got to the highest point on the wall, I sprinkled some of Seth's ashes off the wall, because I knew that you know that connection needed to be there. That raised about 12,000 pounds and then in the following years did lots of work around charity balls. for roads or London to the Brighton bike ride, people run races, all kinds of things. We did some pottery because I live in Stoke on Trent, the home of the pottery. So Emma Bridgewater, people may be familiar with Emma Bridgewater’s pottery. They did some special mugs for us that we sold in support of pancreatic cancer UK, we sold 2500 of those, and then some vases and things. So about five years after Seth died, I raised the £49,000, but in between …

Gill Phillips  25:31
As quickly as that,

Lesley Goodburn  25:33
Well, it felt like a lot.

Gill Phillips  25:38
A lot of money,

Lesley Goodburn  25:39
But that was to kind of support the charity and what I'd pledged to do, but then Seth’s story in the play Homeward Bound came along as well. And I found myself taken down that route. So about six years after Seth died, I then kind of switched the focus away from the fundraising and the awareness raising and got much more involved in the research side of things. So currently, I work with the National Cancer Research Institute, the European oncology trial, organised all kinds of organisations around really trying to get to grips and shape the research agenda for pancreatic cancer, then very much involved in something called precision plank, which is about tailoring treatments to the particular molecular makeup of the pancreatic cancer because it can be very different. So I’ve spent the last three years very much immersed in the research world and and really pushing that agenda. And then also really pushing the agenda in research, not only from a clinical point of view, but also from a kind of psychosocial point of view, and how do we support people who get these diagnoses? From a psychosocial point of view, what support is available for patients and families, and even the people who get the operation, the Whipple operation, which is an enormous operation, usually to re reconfigure the internal plumbing of your digestive system, removing parts of it and reconnecting it, you know, even people who get that operation often get recurrence of the disease. So how do we support people? And also how do we support the few people … the few people who survived the disease, the 1%, who go on for 10 years afterwards who, you know, want to support the awareness raising, but actually feel terribly guilty that they survived and so many other people died.

Lesley Goodburn  27:46
So there's a real burden from the people who survive about why have they survived. And that's, you know, that's often quite difficult because when you work voluntarily, in this field, you come across people who have just been diagnosed who may be kind of going straight to palliative care, people who've got the possibility of an operation and treatment, people who've maybe had a recurrence, and then people who've kind of survived the disease and are moving forward. So it's, it's really tricky to be in a world where there are so many possibilities and somebody else's hope is someone else's ... Not , no hope for someone else, if that makes sense.

 Gill Phillips  27:56
One percent  …

Gill Phillips  28:30
No hope Yeah. But it sounds as if you're really making headway. I mean, I didn't as I said, I didn't know that in terms of research and so on. And the fact that you're bringing in the human aspects as well because research can be so medical can’t it, and the whole focus normally is on the science and the you know, microbiology or whatever but the fact that, as I as I heard it, you weren't able to benefit from Pancreatic Cancer UK yourselves because I guess just to know enough about it and to be able to access that specialist nurse within that time when you're just focusing on Seth and what's happening, with your lives kind of falling apart really

Lesley Goodburn  29:10
Yeah

Gill Phillips  29:11
So often it's, I find a lot in my work that the perfect service is out there, and the people who desperately need it are out there but to match the two is really a challenge, isn't it in so many different areas.

Lesley Goodburn  29:24
Like last week, I did a you know NHS England kindly give me volunteer time to volunteer to help if it's in a in a kind of health context. So I do regular sort of carers cafes with Pancreatic Cancer UK where me and another person who's got lived experience - sadly her partner also died meet with people who are caring for someone with pancreatic cancer and just you know, provide that peer support around. How do we deal with chemo? How do we have the conversation about the fact that we both know, our loved one is going to die. But we, we don't want to face it. We don't want to have that conversation about funerals and planning and wills and all those things that come up that people may or may not have in place. And, you know, that feels. Sometimes it's awfully sad to hear people still going through the same things that both me and the other lady encountered eight years ago now. But it's also humbling to know that some of your shared experience might just help someone broker a conversation or connect to the right place to just make things a little less traumatic.

 Gill Phillips  30:45
And I mean, don't answer this, if you don't want to, as I was wondering how you find that personally, I mean, I would guess it must be very rewarding. I would guess that you make some incredible relationships and friendships through it, but it must also be hard on you to keep revisiting … or how does that work out for you? Personally?

Lesley Goodburn  31:07
I think it depends on the day, to be honest

Gill Phillips  31:10
Yeah, yeah.

Lesley Goodburn  31:11
Through doing some of the things around Seth's legacy on Twitter. And Seth's legacy kind of grew out of doing that fundraising and awareness work. And then the film and the play and it became these two words, that I pledged every time I wrote ‘pancreatic cancer’, because I hate the two words, that every time I wrote that I would balance it with #SethsLegacy as a positive to balance it out so that there was some kind of positive purpose. So through the work on Twitter, and with the website, and various other things, you know, I randomly get people telling me of their loved one’s diagnosis, and some days, that's terribly, terribly tough to just get a stranger who wants to share this awful news with you. But other days, that's awfully inspiring as well, because actually, they don't know me, but just know this kind of face on Twitter and the tweets that go out there. And it's a hugely humbling and privileged place to be that you feel someone feels enough of a connection to share something life changing.

Gill Phillips  32:23
Yeah. Thank you, Lesley, for sharing your story, your story together, what you've done since I really, really hope that this podcast …  I know, there's loads of stuff out there, you've done so well in raising awareness. And, you know, I'd recommend the Purple Rainbow podcast series that you did. Was it last year? So many different aspects?

Lesley Goodburn  32:46
Yeah. Which we're just finishing off this year. So we're hoping for maybe one a day, but maybe, maybe there'll be slightly less than one a day, but finalising that this afternoon.

Gill Phillips  32:58
I've got no idea. How would you do one a day? I'll get told off if I start mentioning one a day because I get told off …  I've gone from weekly to fortnightly with my series just in terms of they take a lot of time don't they to put put together and get the right people and keep the energy and so on.

Lesley Goodburn  33:17
But I've got the most, the most fantastic aide with that. Charlotte Foster who way back in the day when I did that trek of the Great Wall was a local reporter on BBC Radio Stoke, who interviewed me before I went and when I came back, and then Charlotte left that post and set up a podcast in business, and has supported me with the podcasts ever since.

Gill Phillips  33:39
So fantastic.

Lesley Goodburn  33:41
Yeah, since 2017, we've been doing the podcasts. And that was the connection that we made through that kind of interview about going to China.

Gill Phillips  33:51
So obviously, I can and I will include links to all of those things as best they can. And if you've got specific things you want me to include, just drop them over. And I think that's what my podcast is trying to do. Just meet these inspirational people, find out about them as people and chat to them. And then people who are interested in that subject area can can go into more detail and link to your podcast and so on. And it's just amazing, really, I didn't know quite what I was doing when I started the podcast series, but I'm just thinking of the links and the threads that are running through the series and the number of people who've taken their own experience and done something extraordinary with it. So I spoke to Yvonne Newbold, who set up Newbold Hope, a very recent one with Sarah Land who set up Peeps HIE, and these are people who are not just telling their stories, but they're setting up as you've done legacies, foundations charities, and I'm hoping that me being able to just spark people's interest and also to link people up across the podcast series. I think I need to plan some sort of wild podcast party where we bring these people together, you know, the ones that can attend because the the networking is is, is really something special

Lesley Goodburn  35:11
And people talk about, you know, what happens to you shapes what you do. So, you know, we talked about the Hope Network, the Heads of Patient Experience network, and we've been doing some really fantastic work there around training, some of the Heads of Patient Experience, how to do digital stories, how to record first person stories, how to get those into organisations, into trusts and how to really evidence the impact and the outcomes of doing that work. Because often people think, you know, you hear people say, well, it was only one story, that can't be valid, it was only one experience. But we're actually making some really tangible links between quantitative data, qualitative data, and single narrative stories that connect, connect all that together. So immensely proud of the work of the Hope Network in terms of that storytelling work. And we have a little festival coming up in March, if anybody wants to join us. This is Lesley, from the professional point of view, not from the voluntary point of view, but some fantastic people who shared stories in different ways. And just trying to build that capacity across providers to be able to tell stories in different ways and affect change.

Gill Phillips  36:35
And I think the person, the episode that people would have to listen to from my podcast series that's relevant there, as well as all the incredible lived experience stories. Miles Sibley from Patient Experience Library, I was just blown away by talking to Miles. And it's a podcast that I keep banging on about because I can talk about how important patient stories are. But I can't back that up, scientifically, Miles has actually gone into it. And it's got research and evidence and so much information there in terms of why patient stories are so important. And part of our discussion was things around the language and the fact that you talk about medical reports, but patients stories, you talk about serious incidents, but you talk about complaints, and the imbalance in the language, and to have someone as clever as Miles and who is research and evidence based, being able to explain why that matters, and how it matters and to actually evidence it, I thought was extraordinary. And another episode, which I think you'll love. It's Professor Catherine Crock. She's the founder of the the Hush Foundation in Melbourne, which is an extraordinary organisation around kindness, and around using music in particular, but also plays that have been shown across Australia, very similar to what you're doing with Seth's legacy. So again, I can see these different strands threading through and I love it when people you know, the different contributors connect with each other, you know, completely independent of me. And then the ripple effect is just the the practical things that you can do together. But also, I think the friendship and the community and just making people a little bit stronger together.

Gill Phillips  36:50
Definitely, definitely. And there are so many people out there doing such such good work that you don't always get to hear about.

Gill Phillips  38:35
So, by the time we put this episode out, Cath will have had her Gathering of Kindness in Australia. And it's part of the network that also links withDr Bob Klaber,, another one of my podcast guests in the UK. And we're hoping to have some kind of Gathering of Kindness in the UK. So you can just feel these different strands. There was Sue Robins in Canada, launching the Gathering of Kindness in Canada, and she's the mum of a young man with Down Syndrome. And I've linked her to Nicola Enoch, who's the founder of Positive about Down syndrome in the UK. And very excitingly as we're actually recording this , Rishi Sunak who started as Prime Minister yesterday and there was Nicola and a couple of young people with Down syndrome in Parliament meeting him on his very first day as Prime Minister. So that's the kind of extraordinary people that basically we know don't wait and the more we come together, I think different specific things that people are interested in but the commonality of human beings and patient experience, lived experience, but as part of your actual life rather than as if the NHS and your actual sort of medical needs are …. You want those to kind of fit into just getting on with your life don’t you, as best you can.

Lesley Goodburn  39:58
Definitely, definitely We just need to listen to what's important to people and do something with it. Really just …

Gill Phillips  40:06
Yeah, that's the theme, isn't it?

Lesley Goodburn  40:08
Yeah. Just really listen to what's important to someone. Whether it's how strong the tea is when they get tea from the tea trolley, or which person is the person that they need at their side, when they're in hospital, who's the care partner? What what is it that's important to that person.

Gill Phillips  40:28
And you get … it links to perhaps some of my work around dementia care. If you get somebody perhaps, really upset, they're given a cup of tea, and they throw it or something. But actually, you hate and you've hated all your life, you know, really milky tea or cold tea, or whatever it is. And that's probably one of the few pleasures that you could really look forward to in a day, possibly. And then, you know, on the other side of the scale, you get, like, really creative people. And they can be … it's not anything to do with your professional role. It's just to do with humanity and people who get it. And a lovely story, I heard about a girl who went off to B & Q, and got a colour chart and showed the different shades. And this guy just sort of banged on one. And after that that, problem was solved. You know, it was just way too weak. He liked really strong tea!

Lesley Goodburn  41:19
Yeah, absolutely.

Gill Phillips  41:21
So sharing stories, isn't that?it

Lesley Goodburn  41:23
Absolutely.

Gill Phillips  41:24
Well, thank you. Let's see, was there anything else that we haven't covered?

Lesley Goodburn  41:28
No, I think there was a lot there wasn’t there Gill? 

Gill Phillips  41:31
There was a lot there. I think the way that you told the story, because these stories are hard to tell. And I'm hoping that for someone who doesn't know about you, and who doesn't know about Seth and your legacy, I thought it was just the most brilliant way of piecing it together and making sense for people. So thank you so much.

Lesley Goodburn  41:49
No, thank you. And it's really good to meet you on a screen.

Gill Phillips  41:53
Well, hopefully we'll meet in person one day!

I hope you have enjoyed this episode. If so, please subscribe now to hear more of these fascinating conversations on your favourite podcast platform. And please leave a review. I tweet as @WhoseShoes. Thank you for being on this journey with me. And let's hope that together we can make a difference.