Gill Phillips
0:10
My name is Gill Phillips and I'm the creator of Whose Shoes a popular approach to co-production. 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.
0:45
Hello, and welcome to another episode of The Wild Card Whose Shoes podcast. Thank you to everybody who listened to my recent episode around storytelling. It certainly created some ripples. One of the ripples it created was that my friend Pippa Kelly got in touch. And we had a fascinating conversation about storytelling, and specifically the storytelling work that Pippa is doing now. And how it came from the ripples that I created by connecting her with one or two interesting people back in 2015. I love the power of connecting people with shared passions. You don't always know where it leads. But it's so lovely when you do get to hear the stories that ensued. So today I have great pleasure in welcoming Pippa Kelly. Pippa is an award winning blogger, journalist, dementia campaigner, and public speaker, author of invisible ink and host herself of the popular 'Well I know now' dementia podcast. Pippa is one of my #dementiachallengers friends, and doing wonderful work in this field. Pippa's podcast is much more structured than mine, which isn't difficult. So it will be interesting to see how our very different styles come together in this rather #JFDI podcast that seemed a natural outcome of our conversation last week. So welcome, Pippa. Perhaps you could start by telling us how did you come to be a dementia challenger?
Pippa Kelly
2:20
Well, thank you, Gill. It's absolutely lovely to be here. It's really nice to see you. And I don't know, you seem to be very structured in your podcast. So I don't know why you said that, it all seems very professional. How I became a dementia campaigner. In two words is - by mistake. I mean, I didn't realise ... I didn't set out to be a dementia campaigner at all. My mum developed dementia. But as with so many families, actually we didn't recognise it at all for what it was. The word was never mentioned, we just thought Mom was becoming more eccentric. Without taking up too much of your time, partly because we didn't recognise it, and partly because of mum's ... always her character. I mean, forget about the dementia, always her very strong willed character. She refused to move out of a house that was patently inappropriate for her and dad. And because of tha,t matters came to a complete and terrible catastrophic crisis really. And it was over one terrible weekend that mum got her dementia diagnosis. And I wrote about that really shocking, dramatic weekend. I was a freelance journalist at the time, and I wrote about it in the Sunday Express. And that was the first piece I wrote about my mum's dementia. And it elicited a great response from people, a very large response much larger than I or the editor, I think, expected. And really, from then on, I I began to write about mum's dementia. And ironically, really, I wrote more about my dad, who was ... they were both very old, and they were both very ill. My dad didn't have dementia. But physically, he became worse and worse, and I charted my parents sort of decline really in their final years in the national press. And every paper - The Guardian, The Times The Telegraph, The Express - I began to get a bit known as somebody who wrote about elderly care and elderly care issues and dementia. And then after mum died, I set up my blog, which actually, I don't know if you know this, but to begin with, my blog wasn't really going to be a dementia blog. I just thought it would be a blog, a way ... because I was writing about other things as well at the time and in the newspapers, but it soon became apparent that people wanted me to write about dementia. My readers, let me know that. So then it became a dementia blog, and then that's where you came in Gill because in order to publicise my blog, I went on Twitter. At the time, you had your 1000s of followers and I had zero, nada, zilch. I had absolutely zero. I can remember when I got 100, it was a huge excitement, because I had 100 followers. And you scooped me up under your #dementiachallengers umbrella. And I have to say, and I will say now, that was hugely beneficial. And I'm forever grateful because I honestly don't think I would be where I am today in the dementia world, wherever that is, without You. I seriously ... I'm not just saying that because I'm on your podcast, because that really was very, very beneficial. So then I set up my blog and then won an award, started to be asked onto panels and things and before I knew it, in a very embarrassing moment, actually, I discovered that I was one of the 10 - UK Top 10 dementia influencers. Wow, yeah. My husband had a piece of software, and I was meeting somebody from the Alzheimers society who was asking about who the influencers were in the sector. So my husband printed off this piece of paper before I went to the meeting with this woman, and I handed it over at the meeting. And she said, "Oh, so you're on it, you're number seven". And I said "What?" And looked at the paper. So as always, with algorithms, I still find the whole thing a bit ridiculous. But yeah. So that's really how I found myself as you know, a dementia influencer, dementia campaigner. And then in 2020, that being in the first lockdown, I set up my podcast, something I've wanted to do. And it's like, it's not the sexiest of podcasts. It's a dementia podcast, but it has proved amazingly popular. Certainly, yes. And I suppose really all along the way. I've been storytelling, or listening to other people's stories, or, as a journalist, I am well aware I'm trained in the power of the story. But that's how I became a dementia campaigner. And as I say, it was completely by chance, really, I mean, I have no professional qualifications, or I have no health background, no social care background. I just had a mum who had dementia. And I was journalist and the two came together.
Pippa Kelly
2:20
I think that's how it works in this world, isn't it? So many of the fantastic people that I meet, and indeed I'm talking to on the podcast, they're doing something now that's amazing, based on something that they probably didn't choose; something that's happened to them, personally, perhaps an illness or, you know, like, in your case a family carer, it's, it's a lovely thing to see when people can put something that really isn't great, to search positive outcomes, I think, yeah, I think what you're saying Pippa about the power of Twitter. That was such an interesting time, because obviously, it was a much earlier stage of my Whose Shoes journey. It must have been ... it's more than 10 years ago now. And I think I was discovering the power of a hashtag. So people can look it up now that hashtag #dementiachallengers. And that in itself was able to bring this wonderful network of people ... quite often, 'little' people doing very big things, punching above their weight - people like Sarah Reed and SuzyWebster, and our little gang came together, didn't we?
Pippa Kelly
8:26
Yes, yes. And a great example of that, which I used to use in my storytelling, was the way that the late great Kate Granger used her hashtag #HelloMyNameIs, which became a global campaign. And just for anyone who isn't aware of Kate Granger, she was a young geriatric consultant, who developed terminal cancer herself and found herself on the other side of the doctor's desk, as it were, as a patient rather than a doctor. And during her treatment, repeated stays in hospital and barrage of tests, and she realised that there was something very wrong with the way that healthcare is delivered in this country. And she used her already significant social media presence, and set up the hashtag #HelloMyNameIs to push health professionals and others working in social care and health care to introduce themselves to patients and in so doing make that all important human connection, it was an extremely successful campaign.
Gill Phillips
9:23
It certainly was and what an amazing example of really making a difference
Pippa Kelly
9:29
And what you're saying about the way people can use their own personal stories, of often difficulties, you know ... whether it be a relative with dementia, or whatever it is, and turn that to some ... just to helping people. I remember that first piece I wrote about my mum's dementia, high up in the story, because of course it was a story. It was a personal story, but it was also a universal story as it turned out. I remember saying in it, in this newspaper piece for the Express. I'm writing this story to let others know they're not alone. And of course, that's what resonates. This feeling of not being alone; you think you're the only one who's going through these terrible situations, whether it be a spouse, or somebody with dementia, who has been woken up all night every night, because, you know, their loved one with dementia thinks it's the daytime, and it's 2am in the morning, or whatever it is, but to know that other people are going through it, and that they've survived it and come out the other side. And you know, that life isn't all bleak. It's a hugely, it's a surprisingly beneficial power of communities, actually, that I think is now obviously being recognised, but certainly wasn't. It's a sort of soft power there. And it's hugely beneficial.
Gill Phillips
10:48
And I think helping yourself, just finding that group of like minded people or people who just happen to be in a similar situation. But I think the very interesting side of that is also how empowering it is for people to come together as a positive force for change, encouraging each other a little bit more, to be a bit bolder, you know, perhaps give that talk, tell your story to local conference, regional conference, national conference, and you can see people growing in terms of their stories, and what they're prepared to ... what they're able to share and prepared to share. Because it's difficult, isn't it?
Pippa Kelly
11:26
It is difficult. And that's also very interesting. I had Beth Britton on my podcast might have been last year. And obviously, both of us have told our different, very very personal stories. I don't know how many times you know, In Beth's case. And we were saying, because as we talked, we both were caught out by emotion. You think you're beyond it, and you think that you've grown immune to it because a) time has elapsed and b) because you've said it ... the same story a few times, and then something might happen, and it just catches you. And yes, it is, it is difficult. But it is hugely rewarding too. I remember one speech I gave actually to a carers' conference. And I was telling the story, and I did decide very early on when I started ... when I when I wrote that first piece about my mum actually ... obviously, I got my family's permission. In fact, that was the only time ever I've used a pseudonym in a newspaper, because both my parents were still alive. It was a year after the actual terrible weekend. But I decided I had to be very, very honest; there was no point embarking on any of this unless I was prepared to be completely honest about everything. And when I'm talking about the emotions I went through, because I had it in stereo, I had it with my mum and my dad for what we've now worked out was 10 years, I did begin to feel - particularly I mean, it's about I remember particularly my dad's side, because my dad wanted to remain independent in the flat and my mum went into a nursing home. So actually, although that became what I'm known for, the dementia side of it, mum was in the nursing home. And in a sense, I felt she was safe, she was being looked after. And it was really dad that I had to plough all my energies into because he was in a flat. So I had to really do much more for him in different ways. And to be ... I had to have counselling over this, because deep down in me, there was a bit of resentment. And that's a word that is difficult to say, because I absolutely loved my dad. I really did. In a way my dad was a softer character and easier to love than my mum. My mum and I had some difficult times along the way. I was very much ... you know, my dad was just a lovely, lovely man. But my whole life - you know, and I was young then and I had a young daughter and I had a husband who was building his business. And I found that so much of my time and emotional energy and physical energy was being taken up with that. And at a very deep level that I didn't even recognize, let alone articulate, there was a sort of resentment, you know, I began to get angry. And it was actually Charles, my husband said "I think you need to go and see somebody because you're angry all the time". And I sort of said, I'm not angry. But it was the hospice that Dad was under offered counselling. And I went. And we, you know, we did talk this through. And of course, I then found it was a very common emotion. "Is it really?" "Yes!" What to be resentful of? Yeah, because I thought it was such a horrid thing to feel. I felt like a monster. Anyway, when I gave this speech, I remember sort of looking up, there were about 200 people in the audience at this carers' conference in Oxfordshire. And I was recovering from a cold and a cough myself. And I looked up and thought, "Oh, God, everybody's got colds". And then I thought, oh, no, they haven't. And then I thought, "Oh, my goodness, everybody's crying!" And at the end, it was when my book had come out. So I was signing. - doing book signings as well. And I said to people, "I'm so sorry", you know, and I said to the organizers "for reducing, you know, at least half your audience to tears". And they said, "no, they're good tears". And everybody came up to me. And they said, "No, thank you". And that's a word. I heard such a lot. "Thank you. Thank you for voicing what we did not voice". Because I had said about this resentment. And they said, "Oh, my God, thank you for saying that". It doesn't mean you love the person any less. As you said, Gill, it's just ... you didn't sign up for this. You didn't know you were going to become somebody's carer. And I never think I was my parents' carer. I wasn't you know, it wasn't 24/7 like Suzy Webster was.
Gill Phillips
15:43
It just unblocks something. Doesn't it? You know, we're all sitting there with our own personal stories and stories are all about resonating with people. We're all sitting there in our own little worlds. And to give people something that they just feel, "That's me!", or "I could do that". So, just refreshing to hear that I'm not alone. It's interesting. I think the whole thing around people telling their stories, one of the things that I'm very passionate about is supporting those people, because it's a really big deal. We've actually got a poem, we use poems a lot in Whose Shoes as you know, about 'standing up and telling my story'. And I think it's exactly that, what you've said that you can't take it as read that anybody ... and if it's a genuine passionate story, something on that day might trigger in some way or ... just to go back to being part of the audience of a conference, it's not good enough, you know, you need somebody to be really nurturing that person, after they've told their story. And if they can stay to the conference, look after them, you know, make sure that they're psychologically safe, really, and they're able to join in and and, you know, be part of things rather than just the token speaker that's been wheeled in to tell us stories - it's far far more than that.
Pippa Kelly
17:04
Yes, I think you need to be aware as well. I mean, now that I do the storytelling sessions, which I know you want to talk about, but we've had a few people that organize it, and I've had a few conversations around whether we need to give trigger warnings, because it is quite powerful. And if somebody's you know, there was a woman and her, I think it was her mother had recently been diagnosed. And so what I was talking about, my own personal story, a) might trigger me. And it was quite funny, you know, because you have to laugh. And sometimes
Gill Phillips
17:37
You do, you really do.
Pippa Kelly
17:38
And I, I kind of believe in black, black humour, so you've got a sort of way to deal with it. But I might tell you in a minute about when I was myself telling it, and got a bit triggered, but also somebody in the audience did you know, and you have to be sensitive to that. So now without giving away what it's about, which can reduce the power of the story, you can say, look ... I think they know, you know, I think they know. They've only got to Google me to see what what I'm about, so they know about the dementia theme, and if somebody wants to get up, walk out if they feel they don't want to be for this particular little bit of the session when I'm telling this quite powerful, rather moving and quite painful story, then just feel free to leave. It's not rude. Just look after your own sanity, your own health, your mental and emotional health here because you just need to know that everybody understands really, and everybody's reaction will be different. And also your reaction on a different day at a different time will be different. The chap who's a lovely guy who arranged you know, organised and facilitated this, that's all a long story that we will come to; how I got the connection bit of it all ... he said, "Oh, I think you should get the train Pippa" It was up in Luton or Bedford or something and I am very happy to drive. And I said "No, I'll drive. And of course. Every train was cancelled. The trains were cancelled. A fantastic Uber driver said "No I'll take you to here, to there, to everywhere". And anyway, the upshot was that having set off at about 7am to get to this thing well in time for one o'clock, I was billed as the one o'clock speaker. I arrived which was unbelievable really given that everything had been thrown at me. I honestly thought I wasn't going to get there at all. I skidded to a halt in front of the audience at about 10 past one, you know ten past the time I was due to give the speech and obviously I was quite rattled and extremely stressed by this journey. And there are two points in the story I tell, that I know I've got to arm myself for. And I normally do. And I don't want to start emoting all over the place. I need the story to be powerful, not me standing there a quivering wreck. You know, I'm not ... I don't want to do a whole sniffy sniffy emote. I need the story to be power. Also I, I want to keep the emotion out of my voice, out of my body language. And I do normally succeed. But on this occasion, it was quite interesting. I was completely tripped up, I was completely ambushed. And I just had to stop for a moment, which I didn't like. And I felt, you know, they were very sweet. But I said no, because I don't like to show the emotion. But it was just because I was in such a stressed state when I arrived, obviously, I wasn't able to arm myself as I normally do. And so it's quite interesting. How close to the surface one's emotions are.
Gill Phillips
20:30
Yeah, that's interesting. And I think that phrase, you've just used "to arm yourself", you know, things that you don't perhaps consciously realise that you're doing. Interesting. So how did you get into real storytelling? You know, standing up and giving storytelling talks. Is that where we go next with this Pippa?
Pippa Kelly
20:51
Yes, very good question. And this is very convoluted. And I hope I get from A to Z because along the way, one of my points in storytelling is what makes a good story. And the first point is that it must have a beginning, a middle and an end. And I'm just praying that this story is going to have a beginning and a middle and an end, because it's quite long, isn't it? And it involves you Gill. Again.
Gill Phillips
21:11
You were you telling me a bit last week, so I can help with the various points as well? I think so we'll do between us.
Pippa Kelly
21:18
Yeah. So it all began ... I've set up my blog. My blog was going. We used to meet, didn't we, the little #dementiachallengers group. And we were at dinner one night in London, all in a restaurant. And you had some thing that you were doing for Dr. Mark Newbold, and he was chairing a commission into the urgent care of older people. And he'd asked you to do something. You surprise, surprise were mega busy. And you said, "Would anybody else like to come up to Coventry and meet Mark?". And this group - a couple of people from the NHS and there was somebody from social care and the person was going to contribute from the dementia aspect, I think, or from a from a relative's aspect, maybe. Anyway, I put my hand up as I'm always game for anything. So I said, "Yes, I'd love to do it, Gill". So I went up. I was quite careful, actually, Gill, that I didn't go up and relate personal stories at all. I actually mined into the #dementiachallengers group and put it out on Twitter and said, "I'm doing this, anybody got any points they'd like to make about the urgent care of older people and their experiences of it?" And I went up, and I gave my all the opinions that I gathered from the #dementiachallengers group. And actually thought I've told enough about my story. So I didn't really use anything personal. And then the session finished. And people just, you know, went away their separate ways. And then, Mark Newbold, and me and a couple of people from NHS were left. And I think I was waiting for a train or something. And it so happened that my father-in-law had recently died. And as we were chatting, ... it just came up, you know, as always, quite interesting, because I said, actually, you know, what's interesting is that my father-in-law, who was called Maurice, and I said, and actually Maurice's care, was exemplary in the NHS at the end of his life, it was just exemplary, couldn't fault it, really. And then I said ... I haven't said this. I didn't want to say this in the session, Mark. But my father, and I've written about it quite a lot, you know, had some terrible episodes of care. I hate to say it, you know, at the hands of the NHS. And I said, and what struck me and my husband when we were talking about this, actually, before I came here today, but I didn't want to witter on about this, was the fact that all the points that made Maurice my fatherin-law's care, so very, very good, were the same points and issues that in a negative form, made my own father's care, so very poor. And what it all boils down to the nub of it is that in Maurice's care, all the way through, they put Maurice at the centre of their care, they saw him as a person, and they put Maurice right at the centre. In other words, it was genuinely person-centered care, a phrase, which at the time has been bandied around a lot. And I said, but in my father's case, they completely ceased to see him as a person. And they were worried about protocols, rules, regulations, and they trumped everything, including the person who should have been at the very heart of their care. And as I was telling Mark this, he was very interested and he got more of the actual story of each case out of me. And then when I got home, I got an email from Mark. And he said, Look, that was fascinating what you told me. The reason he liked it was because it was the comparison of the two: the good and the bad. And the way that what made one so good and one so bad was the same thing. It was whether or not the person was put at the heart of the care. In Maurice's case, very much so; in my father's case, not at all. And he said, "Would you write the foreword to the commission's report?" I said I'd be honoured. And I wrote it. On the back of that, I was asked to give a talk really to bring to life the foreword and give a talk on what really amounts to Person-Centered care, I suppose. But it had rather lost its value, that phrase, because it was being bandied about so much, it kind of cheapened its currency a bit. And then I gave a speech at the NHS Confederation. And then in the audience at the speech was Dr. Adrian Hayter. He was head of a CCG at the time, and he asked me on the back of that to come and give a speech to their AGM, very much, again, around the power of person-centered care. And I remember, I think Mark had asked me to give a title to my speech; Adrian certainly did. And I gave as a title to that speech, "At the heart of all care is the person, the patient". And I remember I started the speech by saying, I know that sounds absolutely blindingly obvious that at the heart of all care, is the patient, but actually, you'd be surprised how often it's forgotten. And then from that AGM, came again through Adrian, a connection with ... he was part of Frimley 2020 Leadership Programme. And this was an NHS programme for managers within the NHS, who were wanting to advance their careers. That was a leadership programme. And then as part of it, somebody had the idea that they'd seen that what I was doing through stories was to influence people to steer them to certain ways of thinking, and obviously, as a leader, within management, that's what you need to do to bring people with you, whether it be your team, whether it be because you're making a decision about the merging of two hospitals, or whatever it is. And so, could I come along and give a session as part of a much, much broader programme that might last ... I think, some of them last a year or two, and just do a session for two or three hours on the power of storytelling. And, you know, I always like to say "Yes", I said, "Well, I'd love to", but I was thinking, "Oh, my goodness, this isn't well out of my comfort zone".
Gill Phillips
27:29
Fantastic opportunity. I love that.
Pippa Kelly
27:32
But a fantastic opportunity. So I went along, the first one was at Royal Holloway, and I was a bit trepidatious. I mean, I thought, wow, these are scientists, these are senior managers in the NHS. And this is little old me. And it was quite interesting, because I think there was a lot of cynicism. I don't know, I'm speaking for them. But I would have been cynical. I definitely would have been cynical myself. But then there came that moment. And you often talk about your lemon light bulb moment. And there was a definite lemon light bulb moment because I can't remember exactly when in the proceedings, but I did feel oh, dear, I'm not sure I'm bringing them with me here. And then suddenly, probably when you asked, "Has anybody got any questions?" A senior consultant put his hand up. And it's quite interesting, actually, that even when you're an audience member, as opposed to ... it's a bit like being a patient, you become a little bit more hesitant about things, you know, so there is a senior consultant and there is me, I mean, nothing. And yeah, he was quite hesitant about ... a certain vulnerability, isn't it?. And then he put his hand up and he said, "Yeah, you've really made me think because my dad is ... I can't remember now, but say 80. He's got some very rare condition. And he's being treated at the moment. Every night when I get home, this consultant was saying to the room, he phoned me up, and he tells me what's happened. And he says, So what's happening? Let's call the consultant Phil, I can't remember what he was called. And the consultant said, and me and Dad, we talked through what was happening. And the way you know, what you've been saying, but I realised that it was all the other people, the other old people who are having things done to them and they don't have ... and his father was a retired GP, he said my Dad is a retired GP. So actually, he's quite well placed to know himself, but he doesn't know what the hell's going on.
Gill Phillips
29:26
Classic
Pippa Kelly
29:27
And he phones, we talk and I reassure him. But what do other people do that don't have a son who's a consultant or don't have a son? And I think it might have come about because at that time, I was using the Kate Granger story. At one stage with the Kate Granger story, she she says, you know, I was in hospital I had got yet another infection. I was in great pain. And I think about 15 professionals came up to see her; she said not one of them introduced themselves by name or by title.
Gill Phillips
29:55
Shocking.
Pippa Kelly
29:57
There's something wrong here. So she introduced her hashtag. #HelloMyNameIs - clever, clever hashtag. Just like any clever slogan, any clever soundbite, any clever headline? #HelloMyNameIs is so simple. Hello, my name is Pippa. But actually what lies beneath it is a human connection. You know, hello, I'm here, I'm here for you. My name is Pippa, what's yours? It's that human connection, which is so often lost in that relationship between the cared and the cared for whether that be the surgeon and the nurse and the patient, or the social care professional and the person with dementia or ... you know, it's just that a human connection. And I think that's what you and I are all about Gill, just reminding people gently about that. Maybe or I don't know.
Gill Phillips
30:52
And interestingly, I think quite a few people say that it was because Kate Granger was a doctor, that people really heard that and listened to that. If any kind of just ordinary patient, if you like, had tried that campaign, it would never ever have taken off and been so successful.
Pippa Kelly
31:12
Yes.
Gill Phillips
31:13
Which is ... in terms of the power and the hierarchy, and so on, there's a lot there as well. It is a fascinating area, but it is all about that human connection. And I pick up, as you know, like little Whose Shoes scenarios as I go. And some of the things you're saying are jumping out to me. So one of my lemon light bulbs, if you like is what happens to the people who don't have a consultant as a son or, and just how complex the system must be that it takes that to unravel it. And within that family, that will be normal. "Oh, I'll just talk to my son tonight. And he can explain it all because I hadn't got a clue what was going on". And I suppose that's at the heart of our work, isn't it, to make things simpler, and more person-centered genuinely, rather than wrapped up in gobblygook or complication?
Pippa Kelly
32:05
Absolutely. And I'm cynical enough, you know, I am at heart, a hack, a journalist. So certainly with both my parents, to get back to their stories where I battled and I do use that word advisedly, and it was a battle and I waged a battle first for my dad. And then for my mum. To get NHS continuing healthcare. And I'm afraid I'm cynical enough to think that there is a little bit of deliberate complication there. And confusion.
Pippa Kelly
32:37
Oh, yes. Big time!
Pippa Kelly
32:39
There's an enormously long form, that you have to fill in. But all it is, is a form that you have to fill in. And they call it for a start. I mean, the jargon is, it is a "Diagnostic support tool". No, it's not. It's not a diagnostic support tool. It's a form. Who's gonna understand what a diagnostic support tool is? I wouldn't have the foggiest what it is. They baffle people into submission. And I'm sorry, but I can still actually get very angry about aspects of both my parents' care. Yeah, I do have to be careful that I don't, but I can because at the end of the day, it is simple as you say. At the end of the day, as I once said to a nurse assessor, who came around to assess my father for continuing health care. At this point, my father was lying in bed, completely immobile and fed by a PEG tube in his stomach, unable to speak. And she came along and said she had a conversation with him about Shakespeare. And impossible, for a start. But what struck me was is we had this conversation in one room and just the other side of the wall was my father dying. She had completely lost sight of the fact that what we were all really there for was a dying man who was my dad.
Gill Phillips
34:09
Yeah, the person.
Pippa Kelly
34:10
And we were in there discussing whether he's scored ... I know you have to do this. Don't get me wrong. I know you have to score people, you can't go dishing out money to anybody. But we were discussing at great length, she and I, you know (just separating us from my dad who was dying was a wall) whether he scored three or four on his, you know, whatever level, whatever category it was - his skin function, his diet ...
Gill Phillips
34:39
Yes, horrible things to be talking about really horrible
Pippa Kelly
34:42
Completely lost any kind of respect or dignity. Now at one point I did have to say, we're talking about my dad, and you know, and I know that he's being fed by a peg, because he can't swallow and he can't speak. So how on earth did he have a conversation about Shakespeare. And I know, where she was able to say that because one of his carers was called Portia, as she will have said to him, you know, the nurse assessor will have said, "Oh, Mr. Kelly. Portia, like the Merchant of Venice, and he would have gone ... (indistinct noises).
Gill Phillips
35:13
Oh, yes, yeah. And then that becomes him talking in depth about Shakespeare!
Pippa Kelly
35:20
And even now, telling you that Gill makes me get very emotional and very angry.
Gill Phillips
35:28
Yeah. And already that's ... we had exactly the same experience, we really did. So Colin, my husband's Mum, we were sitting there in ... It just takes you straight back there. We were sitting in a small room in the hospital, with that same group of people around, talking about pressure sores, talking about skin quality. And all I could do was try and sort of contain my anger just like you in terms of whether it was a three or four. And I thought we could be visiting her at this moment. And she was across the way in the ward. And we were in a little room. And it took me straight back there Pippa, exactly the same. And I mean, it's a Resource Allocation Filter - if they want a three word term for the form - instead of just form, and the level of education ... when you think how much speaking English as a first language, being articulate, being educated, having the time
Pippa Kelly
36:25
Hours!!
Gill Phillips
36:26
And the ability to go into the system and understand it
Pippa Kelly
36:30
Absolutely. No, absolutely. And I think that's where the power of stories comes in. Because when you just said "that took me straight back". And that's when you know, your story has landed, you know, and I see sometimes when I'm talking about the power of stories, I see people in the room often kind of nodding, they just start nodding, yeah, because they're there. And that's why it can be difficult. It can trigger people, and you have to be careful to warn people. But that's sort of what you want to do. And that's why stories are so powerful, because they connect through the heart. And there's nothing you can do about that. This is what advertisers know. Think, John Lewis advert at Christmas, you know, I mean, very difficult.
Gill Phillips
36:30
Yes.
Pippa Kelly
36:33
And another thing, I thought about this recently, actually, so one of the occasions when I had to, I think everybody has to appeal their NHS continuing healthcare. So this was my second round because dad died. And I was now appealing for mum, because, oh, you'll never get continuing health care for your mother because she's got dementia, and people with dementia just don't get continuing health care. And I was like ... but then there's my very, very nice social care manager who was saying, like, your mum definitely qualifies for this Pippa. So I said, "Okay, well, I will gird my loins, then Sylvia, and I will go into battle for her". And she said, "You go into battle for her". And I said, "I will". And I of course got turned down on the first try. I flew back from a holiday to go to the appeal panel. God knows how much these appeal panels cost. There were about seven people around the table. And when I arrived, the lay chairman, had a quick chat with me. And he said, "Tell me about your mum". And I told him - and I told him in a very brief form, this terrible story that led to her diagnosis. And then we were walking down to the room where the appeal panel was being held. And he said, "You're going to tell the appeal panel about that story of your mum's diagnosis". And that had been several years earlier. Her dementia was very advanced by now. And I said, well no, I wasn't going to, because it was a long time ago. So here am I, the professional storyteller and I didn't see the power of that then. Because he said to me, and again, you know, it's human connection, isn't it? So I'll be thankful to this man, whoever it was, because he said "I would. I would tell him that story". I said, "Really?" And he said "Yes, tell them that story". So I said, "Okay". So I went in. And when they said to begin with, "Would you like to tell us anything?" I did tell them roughly the story. And of course, he was quite right, because actually, I saw some of them around the table. I sort of got them ... I sort of got them by the short and curlies. And then when we began to discuss in great detail, these scores on this diagnostic support score and whether mum scored you know, this, that or the other and why I felt she should be scored higher on this one than they'd given her. The psychiatric nurse around the table began to go on about my mum's antidepressants. And I'm thinking, why is he going on and on about her antidepressants? Because her dementia was very advanced, and to be honest, I'm much more worried about this, that and the other - but what he'd done was he'd seen a way in, as it were, I think, and he was thinking we can definitely get the scores up here.
Gill Phillips
39:48
Right? So playing the system and ... goodness
Pippa Kelly
39:51
Playing the system for me. Because I had grabbed him emotionally. I grabbed them all emotionally, I think with the story because they were thinking ... It was head and heart. You know, they were thinking, we've got to give this woman. Yeah, this is such a terrible story, But their head was saying, but we can't because of course continuing healthcare, it does boil down to money. And then and then you know, I think about two days later I got the email saying she has been awarded it.
Gill Phillips
40:17
The power of storytelling. And that's incredible. And I'm sure we could talk for a long time about continuing healthcare. And my mother-in-law, it was dementia, and just like you're saying, it was almost impossible. And we actually ended up getting continuing health care, I think about two weeks before she died. And you think - all that time, effort on everybody's part, it was mis-directed, you know. It needed to be put into either making things happen faster or caring for her or visiting.
Pippa Kelly
40:49
Absolutely, no, absolutely. I didn't get my dad's continuing health care until after he died. And at one stage when I was pushing and pushing, because it went on for months, and there were huge delays, and you know, when you get the appeal, and I kept saying, we need the appeal panel now because he's dying. And I got a letter from them. Yeah, I think I've still got it somewhere in all my files, and it said, you know, "Dear Miss Kelly, be assured that we deal with the appeals in the chronological order in which they come in; the living before the deceased. I remember standing, we were in a different house. And but I remember standing in my study there and just going ... you know, and feeling the world kind of rock. "The living before the deceased". This was my dad, while he was still alive. What are you putting people through? I mean, what are you doing? Where is your humanity?
Gill Phillips
41:44
Do you remember my mum?
Pippa Kelly
41:46
I do!
Gill Phillips
41:46
And I mean, obviously you do remember my mum, but specifically, the 'Certificate of Existence', we had to fill in for the pension scheme.
Gill Phillips
41:54
That's really Orwellian, isn't it?
Gill Phillips
41:56
Yeah, I've got a video of mum saying, you know, I mean, sadly, she is no longer here. But "I exist, I exist!". And it's just so insulting, you know, to have to fill in, I think it was once a year. And they called it that: a 'Certificate of Existence'.
Pippa Kelly
42:12
Well that is... I'm sorry. No, I just wonder if that's a joke! I mean, that's just really ...
Gill Phillips
42:18
Off the scale.
Pippa Kelly
42:20
Yes. Because the thing is, I completely understand that we're talking about a lot of money. And I'm sure one of the reasons why it's difficult for somebody with dementia, as we know, in terms of hospice care, and all this is that people with dementia can live an awfully long time and you don't know their ... it's very difficult the prognosis, isn't it to know the journey, when it's going to happen? And so it's extremely difficult to sign off, the money. I can see all that. And I'm, you know, I'm very rational about all that. And it's got to be carefully regulated, you can't just dole out money to somebody who says, "Oh, by the way, you know, my mum's got this and my dad's got that. You've got to go and make sure that this person qualifies for it. But there are ways to do it.
Gill Phillips
43:04
And ways not to do it. So I was interested Pippa in coming back to ... Inevitably, we're going off in all sorts of directions. It's so interesting. I mean continuing healthcare wasn't on our radar. And now it's central to the conversation because it's just such an emotive one isn't it? But I was interested in your storytelling and doing the fabulous storytelling work that you're still doing , are you, for the NHS leadership programme.
Pippa Kelly
43:33
I still am. Amazingly!
Gill Phillips
43:36
And you mentioned to me one of the stories that came from that?
Pippa Kelly
43:38
Yes, absolutely. So as I said, I would be very cynical about it, myself, but we've honed it over the years, and possibly it has become a stronger, more powerful ... to coin a phrase tool in itself. But I'm now able to say, if people are at all cynical ... because I often say the first question I'd have is "Yes, but does it work? It's all very well having a nice three hour session that might be a bit softer than some of the other sessions. But you're a professional storyteller and okay, but that's alright. And you're setting but does it work in our setting, whatever they might be? And it's health and social care". And so I'm able to say in a word, "Yes". It does work because there was this amazing story that came to me that was ... there was a woman on the course, it was over a year ago now. And let me call her Anne. That's not her real name, but Anne was a manager. And as part of her job, she was a manager for a large geographical area for young adults and children with severe mental health needs. And Anne had gone to the Better Care Funding Board to apply for some very specific funding, which was so that she, who was well placed, could target the funding where it was absolutely needed. And on three previous occasions when she'd gone for the funding, she'd been turned down. And then she said, I came to your storytelling session. That was part of their 2020 course. And I thought "I'm going to apply once more Better Care Funding Board, because this funding is really important to the people I serve". Because one of the questions I pose when I do the storytelling session is, this is a very specific form of storytelling that we're talking about here today. And it is storytelling with a purpose, you know, you want this story to achieve something to help you to achieve whatever is your goal. So the first thing you need to do actually is think well, what is the purpose of this? You know, what is the purpose of my role? And what is the purpose of this particular story? So Anne had gone away and thought, so what is the purpose of this? And what is the purpose of the funding? And I also say to the people on the course, actually, if I was giving this session to another group of people, I might say, you've got to go and find the stories. But I said, you don't have any problem finding the stories, you are surrounded by the most powerful human stories you could ever wish for.
Gill Phillips
46:17
Constantly!
Pippa Kelly
46:18
Constantly, Because, by the very nature of what you do, if you're in health and social care, you are dealing with people at the sharp end of life, in whatever way they are bound to be in some sort of difficulty. So it's just a matter of choosing the right stories for the right purpose. So she went away with all this in mind. And she thought, well, yes, I am completely surrounded by stories. So I'm going to use some of these stories as people have shown me. And so she thought, Yes. And she said she had two or three. And I'll tell you one that Anne told me she had. She said, I had this woman. And she had a son, and he was 21, I think it was, and he was above average height. He was overweight, he had bipolar disorder. He had autism, and he was schizophrenic. I may have got one of those three wrong. But anyway, this was a chap with a few problems, a few issues. And on more than one occasion, this woman's neighbours had had to call out both the police and the ambulance to deal with situations, because he was prone to outbursts of violence, this son, and the woman / mother's marriage had come apart as a result, and she'd given up work to look after this son.
Gill Phillips
47:41
So the whole story of the family, isn't it? What's happening.
Pippa Kelly
47:45
Yes. And when she'd gone to the local authority to ask for funding, this rang ... I don't know if it'll resonate with you, Gill. But this resonated with me ... the local authority said " Oh, yes! We know what you need!"
Gill Phillips
48:01
Cynical laugh ...
Pippa Kelly
48:02
Yeah, we will place your son in residential care. And she said, this woman said to Anne, "No, no, no! My marriage has imploded, I've given up work, because I want to look after my son, don't they understand, you know, I love my son, and I want to look after him. It's not his fault that you know, X, Y, and Z keep happening. I want to look after him. And actually, all I really need is five hours of respite care a week. That's all I need. I don't need a residential place, I don't want a residential place. So that's gonna be cheaper for them. But nobody thought to ask.
Gill Phillips
48:40
Much, much, much cheaper.
Pippa Kelly
48:43
So Anne went along for the fourth time of asking to the Better Care Funding Board. And this time she related this and another one or two other stories as to why she should get the funding. And then she backed this up with the business case, and the stats and the facts and the figures that she'd given on the previous three attempts. And this time, she got it. Using the power of stories, she won 3 million pounds worth of funding.
Gill Phillips
49:12
3 million pounds! Wow! And the data and the statistics didn't get through to them, but the stories did.
Pippa Kelly
49:21
And then this is a quote from let's call her Anne, the woman who attended my storytelling course. She said to me, "We use complex pathways in our work, but we forget that they involve people and humans with stories. We need to think about them".
Gill Phillips
49:38
So those early ripples ... I'm fascinated by ripples and I'm thinking how my story and sort of my involvement fits around what you said. So if we see that sort of path, if you like, that ripple between you getting involved with Mark Newbold but how did I meet Mark Newbold? I didn't know Mark Newbold, actually, I'd done a talk. So this goes back to 2015. I'd done a talk at the NHS Confederation. So it was Rob Webster that set me up to do that, which was really brilliant. I didn't know Mark until that, but Mark was chairing the session where I gave my talk, which was a lot of storytelling? I remember talking about my mum and exactly the same kind of stories, what would keep her independent at home? And how little that would cost compared with the big formal staff? And you know what, take somebody into care or whatever, "No, no, no, we don't want that!" And then Mark, invited me to get involved in that commission. And as you say, I was busy. Now, when I look back at that, and I think, how come I was so busy not to get involved in something interesting, sort of pretty much on my own doorstep.
Pippa Kelly
50:55
You were very busy.
Gill Phillips
50:56
But it was because of mum. I was busy with Mum at the time. And I think we were going through ... Mum was living with me she'd had a fall; we were working on what to do.
Pippa Kelly
51:05
Yes, of course you were whereas both my parents you see by then had died because 2014 I set up my blog because Mum had just died then. Yeah.
Gill Phillips
51:15
So it's how these stories all interweave, isn't it? And then for me, I mean, it's been fantastic Pippa because you sow seeds ... I'm and I'm a big seed sower if you like. I love connecting people. But it's so lovely when ... you know not that often really, I guess ... you get to hear the detail of what really happened as the result of you know, perhaps throwing that pebble in the pond, connecting somebody, inviting them. And then, how it builds and grows and your incredible work around storytelling, and to be influencing those senior people in the NHS, and for one of them to be able to put in and succeed in getting that 3 million pounds. Now, that's only one of the outcomes that you know about. So there'll be other ripples going on elsewhere that you don't know all those other people sitting in the room, what they might have done as a result of it. And that's what I find fascinating.
Pippa Kelly
52:08
Yes, no, they have got other results. They have got other results. I know. Yeah, you know, some bigger and some smaller, but they've said things have changed within ... it doesn't have to be money related either. I mean, that's a very tangible example. But it can be like, the way that meetings were becoming very difficult, you know, become easier. It's about being slightly vulnerable. Because I think, as we were saying right at the beginning of our discussions, in order to tell a personal story, you are putting yourself out there a bit. I'll tell you who else I think, and I hope she won't mind me saying this, but I think is using stories very powerfully and very positively. But it is at a personal risk, you know, vulnerability - is Kate Lee, Chief Executive, the Alzheimers Society. I saw on Twitter during COVID, during the terrible times when people couldn't visit their mothers and fathers and what have you and care homes and people with dementia. And though the terrible window visits, which actually were far too confusing and painful, a lot of people just decided they would rather not. They couldn't do it. It was putting their lo ved one in too much confusion to even go there. I saw this picture on Twitter, a little video of a woman visiting obviously parent in a care home. A windows visit. And I thought, oh Kate Lee has retweeted somebody and then I thought oh, no, no, it is Kate Lee! She's visiting her own mother with dementia. And then I contacted Kate and said, "Would you come on my podcast?" and she explained it on she'd actually done the little video on her iPhone to show her dad to explain to her dad how it will work if they went and visited her mom in the care home and did a window visit. She was up in Scotland, it was blowing Hooli and it was all very, very difficult. And then she decided to put it on Twitter because it was such a powerful little video - and what a powerful impact that had. But she is the chief executive of the biggest dementia charity and difficult thing to decide to do you do put yourself and your family actually in quite vulnerable situation.
Gill Phillips
54:08
But I think if we don't do that, if none of us do that, then none of this good work and the lemon light bulbs - they wouldn't happen. Yeah.
Pippa Kelly
54:15
No, no, quite.
Gill Phillips
54:17
I guess where I'm doing that particularly ... and again, I think we're all getting bolder over the years. And one of the amazing links really between us and with the #dementiachallengers work is the phone call that I got from Florence Wilcock saying, "I've been watching what you're doing around dementia care. Do you think Whose Shoes would work in maternity?"
Pippa Kelly
54:40
Yes!
Gill Phillips
54:41
And me being able to use all the learning that I got in terms of the power of a hashtag, you know, #dementiachallengers, #HelloMyNameIs and to come up with the #MatExp maternity experience hashtag and how that is all taken off. So I think in terms of my work and storytelling and so on, the thing that I've become much bolder with really and you know, again, you've got to kind of risk yourself a bit and vulnerability. And "can I really say that?", so in our workshops, we have people making pledges from the heart - and if it's not from the heart then don't make a pledge, but I think sowing that lemon light bulb idea that individuals can actually make a difference without having to wait for permission. And what I do is invite people, if they've written a pledge, who is it that's just so passionate about what they want to do that they want to share it with the whole room? Which is very different from perhaps going round and saying, you know, we'll have one person speak from each table or all that stuff that can knock all the energy out of it. And then if we're doing that live session in the room, then I can pretty much guarantee now that whatever anybody comes up with, I can connect them to somebody who's perhaps equally interested in that area, already doing something so that they don't have to start from a blank sheet, a community of people that they might be able to link to, which makes it all more fun, less lonely, more impactful. But, you know, I've only been able to do that, really, by gathering so many stories from so many different parts of the system. And feeling, "Yeah, I've got something that's a little bit different that I can offer there now". Because the way that we go and run workshops across so many different services
Pippa Kelly
56:34
Yes, they are amazing. They are amazing.
Gill Phillips
56:36
And with so many different teams, and the graphic records that Anna Geyer produces and so on, that I can see these kind of commonalities and threads between services. And it's all people, it's just all people and whether it's maternity or whether it's dementia, you know, that vulnerability, that wanting to be heard, to be listened to, to be taken seriously, to be valued - that's what it's all about.
Pippa Kelly
57:01
I think there are one or two people that you know, are the most amazing connectors of other people, you know, networkers but connectors and you are one Gill, you know, my God you are.
Gill Phillips
57:14
I love it. I do. I love it.
Pippa Kelly
57:17
You love it. Yeah. And I say that Dr. Adrian Hayter is another who is brilliant at doing that. Some people are just very, very good at it. And it's very, it's very selfless as well, I think, you know, you're very generous of your contacts and your time and your energy. So thank you. I mean, I think it's brilliant, because I honestly meant that I don't know that I would have got anywhere really, I would have probably still be floundering around in the 10s of Twitter followers.
Gill Phillips
57:48
Well, thanks for saying that, Pippa. But I mean, I find it rewarding. And I'm sure Adrian does as well. I think, just to connect people ... I've got my thing now, hashtag #IntentionalCoffee.
Pippa Kelly
57:59
Oh right!
Gill Phillips
58:00
Realigning text with audio
And honestly, I've got certain people that I think they you know, however busy they are, they just need to meet each other. And the most outra geous thing I did was to with Mary Salama, who is one of my favourite NHS consultants, a paediatrician in Birmingham, and I was absolutely determined for her to 'meet' Joanne Minford, who's a paediatric surgeon that I've done amazing work with in Liverpool. And I joined them live on a Colab Partnership conference. They'd never spoken to each other before and we did a video link and got the two of them talking. And then of course, they get to the point where you can't shut these people up because they're just connecting so strongly.
Pippa Kelly
58:46
Brilliant!
Gill Phillips
58:47
And that was recorded on video. It's very powerful stuff.
Pippa Kelly
58:51
Yes, I'm sure
Gill Phillips
58:52
But just bringing the right people together. Well, Pippa, how did that work for you, my less structured approach?
Pippa Kelly
59:02
It's brilliant, and I wanted to be here, Gill. I'm pleased to be able to have the opportunity to just say thank you to you publicly. Because I really mean that. I've said it a lot to Charles, my husband. And you know, I really owe a lot to you.
Gill Phillips
59:16: Well, thank you.
Pippa Kelly
59:17: No, I think it's just brilliant. What you do. Yeah, keep doing it!
Gill Phillips
59:22; And how these different threads and ripples go around
Pippa Kelly
59:25: Yeah.
Gill Phillips
59:26: So thank you so much. Yeah.
Pippa Kelly
59:29: No, it's a pleasure.
Gill Phillips
59:30
And thank you enough for coming along and telling us a bit about your work. And obviously I can include some links in the notes to the podcast and so on. And, you know, hopefully, more of my gang will get to hear about Pippa Kelly. And we haven't even mentioned 'Invisible ink', your amazing novel. So I'll put the links in the notes and, you know, hopefully people will will know a lot more about you.
Pippa Kelly: 59:52
Yeah, thank you very much. Thanks, Gill
Gill Phillips
59:52:
I hope you have enjoyed this episode. Please subscribe now to hear more of these fascinating conversations or on your favorite podcast, or and please leave a review. I tweet as @WhoseShoes - thank you for being on this journey with me.
