25. Miles Sibley, Founder of Patient Experience Library

'Whose Shoes' looks at issues from different perspectives. But what weight, do those  perspectives have? Lived experience, learned experience?

Is your version of what happened a ‘medical report’, regarded as evidence, but my version just anecdotal, a ‘patient story’?

What is regarded as admissible or inadmissible evidence?

Miles Sibley is editor of  Patient Experience Library and  fab weekly newsletters and a quarterly magazine, finding  practical ways to bring patient experience to the fore and share best practice

Huge synergy with   my Whose Shoes work -  ensuring  patient experience is taken seriously and people know how to act on it

Huge potential!  I ‘m hoping this will be one of the most influential ‘Wild Card’ podcasts

Lemon lightbulbs 🍋💡🍋:

• There a 100% evidence base for medical practice, but no real evidence base for patient experience
• 70,000+ documents in the Patient Experience Library!
• All too often, patient stories are lost /not given due attention
• How can we make this vital information more accessible and usable for healthcare professionals?
• We need knowledge translation. It‘s no use just dumping piles of patient stories on busy healthcare professionals
• Statistics are seen as hard evidence. We need parity of esteem for quantitative and qualitative evidence
• Important to develop analytical tools
• On the clinical side, NHS brilliant at helping people learn. Evidence based.
• We need similar learning infrastructure and evidence base for patient experience
• The ‘Inadmissible evidence’ report, by Miles Sibley, is BRILLIANT. Let’s make patient experience admissible!
• Language is key. Patient ‘stories’. Medical ‘reports’. 
• When clinicians say something is wrong, it's an ‘incident report’
• When a patient says something is wrong, it’s a ‘complaint’
• First do no harm. But harm is done when patient stories are not seen as important; when people are not listened to
• The GP says “Tell me, what is the matter?” Until you listen, you can’t possibly know what the problem is
• Something goes wrong between the individual clinician and when we get to the organisational/ system level
• Multiple healthcare disasters show the importance of listening to people and #WMTY 
• How can NHS be BOTH evidence based and patient-centred? 
• This can’t happen until listening to patients holds higher status
• Patient Experience Library is gathering the evidence and analysing it
• Evidence needs to be up-to-date - it’s no good hearing what happened a year ago
• Whose Shoes workshops collect immediate feedback - what is important now!
• Health inequalities - central to quality improvement work! Needs to be everyone’s job.
• National Voices, Care Opinion, Joanne Hughes… a lot of people are doing  fantastic work!
• Connect!
• “Nobody’s patient”. Incredibly powerful title for our #WhoseShoes project. People falling through gaps in the system
• Same mistakes around patient safety  happening over and over. Must break the cycle
• Look after the staff, they ’ll look after the patients
• ‘Small’ complaints (e.g car parking) might run much deeper. Listen.
• When Sir Simon Stevens stood down as NHS CEO, his No.1 message:  LISTEN to patients!

Further resources

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Chapters

• 1:16 Miles is the founder of Patient Experience Library
• 3:09 It was odd there was no evidence base for patient experience
• 4:05 70,000 documents in the library! Thousands of visits to the website every week!
• 4:50 How can we make all this important information more accessible and usable for healthcare professionals?
• 4:58 We need knowledge translation. It is no use just dumping piles of patient stories on busy healthcare professionals. We are developing analytical tools too.
• 7:23 On the clinical side, the NHS is brilliant at helping people learn. The structure is in place. Evidence based.
• 9:05 Things are much more ad hoc on the patient experience side. We need a similar kind of learning infrastructure and evidence base for patient experience.
• 11:42 There is currently complete inequality. The ‘Inadmissible evidence’ report is incredibly influential here. Please read it.
• 12:39 Language is key. Patient ‘stories’. Medical ‘reports’. When clinicians say something wrong, it is an ‘incident report’. When a patient says something wrong, it’s called a ‘complaint.
• 13:37 Statistics are seen as hard evidence
• 15:10 We need both. We need parity of esteem for quantitative and qualitative evidence!
• 15:25 First do no harm. But harm is done when patient stories are not seen as important, when people are not listened to.
• 18:00 The GP says “Tell me, what is the matter”. Until you listen, you can’t possibly know what the problem is.
• 18:19 So what happens between the individual clinician and when we get to the organisational system level? Something goes wrong.
• 19:20 Multiple healthcare disasters show the importance of listening to people and what matters to them.
• 23:02 When Sir Simon Stevens stood down CEO of the NHS, his number one message was listening to patients
• 23:45 So how can the NHS be both evidence based and patient centred? How can this happen if listening to patient does not hold higher status?
• 24:34 How are we gathering the evidence? How are we analysing the evidence?
• 26:33 Evidence needs to be up-to-date that’s not what happened a year ago
• 27:30 Whose Shoes workshops collect immediate feedback, what is important now!
• 28:22 That shows the power of these different kinds of approaches!
• 29:00 Health inequalities - has to be central to quality improvement work!
• 29:40 National Voices, Care Opinion … a lot of people are doing some fantastic work in space
• 30:32 Jo Hughes. ‘ A mother‘s instinct’. We have so much to learn. Restorative justice.
• 32:52 Build those connections!
• 33:18 “Nobody’ patient”. An incredibly powerful title for our #WhoseShoes project. People falling through gaps in the system. Not translated into managementspeak!
• 35:33 Should there be a separate NHS England team around health inequalities? – but also it needs to be embedded through everything? Everyone’s job!
• 38:42 We have to break the cycle. The same mistakes are happening over and over again.
• 39:43 If you look after the staff, they will look after the patients.
• 40:39 People complain about say car parking – but it might run much deeper than that. Listen!
• 41:44 Find simple ways to take things forward.
• 42:17 Inadmissible evidence. Wonderful report by Miles Sibley
• 44:42 Let’s have a podcast party!
• 45:18 Our co-produced poem - Evidence based!

Transcript

Gill Phillips  00:11

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 healthcare, and like to hear what other people think, or perhaps even contribute at some point, Whose Shoes Wild Card is for you.

Gill Phillips  00:46

'Whose Shoes' looks at issues from different perspectives. But what weight, do those different perspectives have. Lived experience, learned experience? That of healthcare professionals with specialist learning in medical schools. Is your version of what happened a medical report, regarded as evidence, but my version just anecdotal, a patient story. What is regarded as admissible or inadmissible evidence? I'm delighted to welcome Miles Sibley as my podcast guest today. Miles has done some incredible work in this area. Miles is the founder of the Patient Experience Library, and editor of some wonderful publications, weekly newsletters and a quarterly magazine around patient experience. I was introduced to Miles by Carol Munt, one of my earlier podcast guests, who talked about her lived experience. Carol also introduced me to Angela Cornwall, who talked about caring for her daughter with a rare disease and the speedy boarding patient passport that she invented. Miles ran a feature about this in the patient experience magazine, always looking for practical ways to bring patient experience to the fore and share best practice. There is loads of synergy between what Miles is doing, ensuring that patient experience is taken seriously and that people know how to act upon it, and what I'm doing through my 'Whose Shoes' work. So I can't wait to talk to Miles today and find out more. Welcome, Miles. Can you tell us a bit more about the work that you do? And what inspired it?

Miles Sibley  02:28

Yeah, hello, Gill. And thanks for having me. It's a pleasure to join you. So yeah, the work we do is something called the Patient Experience Library. It's an online research database of all aspects of patient experience, and patient and public involvement in healthcare. So we draw evidence from sources including academic institutions, research studies, formal research, and so on. But also government bodies, health charities, patient voice organisations like Healthwatch, and national voices and so on. Stuff from policy think tanks, anything as long as it relates to patient experience and patient and public involvement. And the reason we did that was because I noticed some years ago, when I was working for a local Healthwatch, that there didn't seem to be a sort of central repository for that kind of material. And I thought it was odd in an NHS that talks in all its strategies about wanting to be person-centred, and evidence-based, it was odd that there was no evidence base for patient experience, or at least not all in one place. If you wanted to find that kind of material, you had to search across literally hundreds of different websites. So we set this thing up to bring all the evidence together, catalogue it, make it searchable, make it freely accessible, everything we have in the library is open access material. That's where it all started from.

Gill Phillips  03:57

That sounds absolutely brilliant. So do people actually use it? There's so much information and so many resources out there on there. How does that work?

Miles Sibley  04:05

Yeah, people do use it. And we get 1000s of visits to the website every week from people dipping in downloading all sorts of publications. This has helped professionals and patients and patient advocates, and academic researchers and so on. So that's great. But one of the things we've learned actually since setting up the library, because I think we launched about six years ago now, is that drawing all this stuff together is really helpful for some people, but actually poses a bit of a challenge for others. So we now have 70,000 documents in the library. 

Gill Phillips  04:41

Wow. 

Miles Sibley  04:42

It's far more than we thought we would ever be able to collect. But this stuff is being published all the time. Every week we're cataloguing and uploading more stuff, and we realise that that quantity of information is actually quite intimidating for some people. They don't know where to start with it all. And also busy health professions and so on, and people in their own personal lives and so on. They don't necessarily have the time to plough through it all and try and understand what it all is and make sense of it. So what we have realised more recently is we need to help people with the work of what will probably be called in academic circles, Knowledge Translation. In other words, how do we help people take all this stuff and apply it into healthcare practice, or health care policy, or quality improvement activity, and so on. So as well as the library, I mean, you've already mentioned some of the publications that we produce, the quarterly magazine, and so on. And that's where what we do is we take the latest and best of research and information on patient experience, public involvement, and so on. And we do little summaries, and give people access to the source documents, but we're helping people to see what's recently been published, help them to understand the basics of what's in there. This is about keeping people up to speed with all the stuff. We're also developing analytical tools. So for example, the national patient surveys that are published by Care Quality Commission, and NHS England, again, is kind of hard sometimes to track those down and find out where they are. So we've created a surveys tracker, that for every trust in England puts all their patient surveys in one place, easy to find just at the click of a mouse. And also we've drawn out some of the key themes and cross referenced them across the different surveys. So if you can think of adult inpatient survey, or maternity survey, or children and young people survey, there'll often be common themes within them, like cleanliness, respect and dignity, waiting times, and so on. We've drawn those out and cross referenced them to help people easily see across the range of different services being offered by an NHS Trust, what patients are saying about those common aspects of their experience. So those are the sorts of things we're now doing to try to help get the information out there and help people understand how to use it. And in some respects, what we've done there is we've actually borrowed from the clinical side of things.

Gill Phillips  07:11

I was going to ask you about that. Because I remember you describing how well that works and how simple and straightforward and streamlined the process is. So tell us a bit more about that.

Miles Sibley  07:21

Yeah, absolutely. So I think on the clinical side, the NHS is absolutely brilliant at helping people to learn. So you know, if you think about your doctors and nurses and all the rest, they get their professional training to start with, and that can take years. So that's an absolute foundation of evidence-based learning. And then having got their qualification, they carry on with their continuing professional development. And they have refresher training in some of the kind of basic skills and so on. And they have their supervision, and they have their revalidation. And they also have access to medical research databases. And on top of all of that, they also have things like their clinical guidelines, and their practice protocols, and their diagnostic aids. And what all of that is doing is recognising that clinicians also would find it very, very difficult to keep up with the huge volumes of medical research that are published all the time. So things like the clinical guidelines say to them, you don't have to read all the research, somebody else has read it for you. And here's a guideline, evidence-based that now tells you what to do. It's absolutely fantastic. And then there's even more because on top of all of that, they then have their own professional journals and conferences, which again, help them continue to learn and keep them up to speed and so on. So what you have on the clinical side within the NHS is this absolutely fantastic learning infrastructure. It goes from the original professional training, through all these guidelines and protocols and so on that tell people what to do, through into the journals and conferences that just generally keep them up to speed. And I think what we've noticed is that on the patient experience side, there's almost nothing of that. The patient experience staff, for example, and by that I include the panels teams, I include the complaints managers, I include the people doing the public engagement work and so on. They're almost unique within the NHS workforce in having no qualification. When you look at training across the NHS, clinicians aren't allowed to practice without a qualification. People who are finance managers and so on are qualified. Human resource people have qualifications. The caterers have qualifications. But the patient experience staff don't. And they don't have any really systematic consistent learning infrastructure to help them to do what they need, to do this quite complex and challenging task. And actually people like the parliamentary and health service ombudsman have been pointing this out. And they said recently in a report that they published a couple of years ago about complaints managers, that the training support they get is very variable, which obviously isn't great. So what we're trying to do is create a similar kind of learning infrastructure. We put the library together, first of all, just because we thought there needs to be an evidence base for patient experience that people can easily have access to. But as I say, we've realised that doing that isn't enough, what you need to do is help people to know what's in there, and what to do with it. So that's what we're doing with our publications, our analytics, and so on.

Gill Phillips  10:35

I love the way you're drawing the parallels between the medical side and the patient experience side and the lack of equality between them. And the complexity, obviously, massive complexity in both areas, but one, you've got this streamlined path to learn about it, find out what you need to do. And the other is just a bit kind of like meh, you know, without the work that you're doing, isn't it? You know, it's all out there and we're all commenting and so on. But the simplicity of trying to bring that together, I think is fantastic. What support are you getting in terms of you're doing all this wonderful work. To me, it sounds obvious. And I think the thing that jumped out from what you said is the NHS are trying to be person-centred, and evidence-based. 

Miles Sibley  11:23

Yeah.

Gill Phillips  11:23

Now, that's what I hear in all the meetings that I go to and all the things that I do, but you're saying that the starting point for each is completely different, and that you're taking the patient experience side and trying to bring it up to the same level of validity?

Miles Sibley  11:39

Yes, absolutely. And you're right, there is a complete inequality in that. And that's why a couple of years ago, or a year and a half, whatever it was, we published this report called inadmissible evidence, because if you read the NHS long term plan, that kind of overarching strategy for the NHS, it makes a really strong claim for being evidence- based. It actually says that the National Health Service has a strong scientific tradition of evidence-based decisions about care. And on the clinical side, that's absolutely right. And on the patient experience side is absolutely wrong. Because on the patient experience side, what you find is that there hasn't been the same rigour and attention given to treating patient feedback as evidence. We've all heard patient experience described, at least by some people, as anecdotal evidence, or soft evidence. And just that use of language reveals a real discrepancy in how it's understood and whether it's even seen as evidence in the first place. And it's very easy for patients' stories, as they're called, to be sort of dismissed as unreliable, and emotional and irrational and so on. And there's a real problem here because actually, against some of the language that's being used. So, for example, something we set out in our inadmissible evidence report is the way that, for example, when a clinician sees something that's gone wrong, and reports on that it's called an incident report. And when a patient does exactly the same thing, sees something that's gone wrong and reports on it, it's called a complaint. And of course, that word complaint carries with it connotations of negativity and moaning and all the rest of it. So immediately it's kind of downgraded in the hierarchy of evidence. And research has shown that because of that, some clinicians actually find it hard to see complaints from patients as evidence. They might be inclined to see it as kind of a breach of trust, or a failure to recognise that their work efforts and how much they're putting into it. So they don't necessarily see complaints as grounds for improving the quality of care. And then this business about kind of hard versus soft evidence is similar. So I think maybe because medicine is science-based, so there's a tendency to see statistics and quantitative evidence as really hard evidence and reliable and this is what we want. And all the anecdotal evidence from patients is soft and unreliable. But the problem with that is that, again, research has shown that statistics aren't always all that reliable, they can actually be quite easily manipulated. And again, there's research showing that, for example, staff can be intimidated or pressurised to achieve performance targets. Or, the way that the process of care is reported, that can be distorted, again, for reasons of wanting to show performance in a different light. So hard data and statistics are sometimes not reliable, either.

Gill Phillips  14:59

It's the old lies, damn lies and statistics, is it?

Miles Sibley  15:02

Well, it is a little bit. I mean, of course there is fantastically valuable evidence in morbidity and mortality statistics, and so on, but we absolutely need both. We need to put the stats alongside what you might call the stories or qualitative evidence, is a term I would prefer to use. Because when you put both together, you get the whole picture. So yeah, I think this is part of the problem that there is this kind of inequality. And in fact, Baroness Julia Cumberlege very recently produced a report that's called 'First do no harm'. And it's about the 1,000s upon 1,000s of women who have suffered avoidable harm through medicines and medical devices, like Primodos and Sodium Valproate and pelvic mesh. And this harm was avoidable because the manufacturers of the devices and the healthcare providers and so on knew about it. They knew about it, because women had been speaking out in large numbers for years, even decades. But nobody wanted to take their feedback seriously as evidence. And so Baroness Cumberlege, eminent figure, exposed all this in this report, 'First do no harm'. In that report, she said that patient experience must no longer be considered anecdotal, and weighted least in the hierarchy of evidence-based medicine. So that was a call from a very distinguished person to say we've got to stop calling patient feedback, 'anecdotal evidence' and dismissing it and avoiding the consequences of it. We have to push it up the evidence hierarchy, and treat it with equal importance with medical evidence, in the hard evidence of statistics.

Gill Phillips  16:45

Yeah, that's, that's incredible really, I think Baroness Cumberlege is such a wonderful person. I mean the work that she's done, similarly around maternity transformation, which I've been involved in, but that quote that you mentioned there, you know, you need people at that level to be using those phrases around patient experience. And that's hopefully the way that things will actually change. I mean, honestly, Miles, I can say, I read your report on inadmissible evidence and it just rocks! I mean, I know you say that it's the most downloaded publication that you've had.

Miles Sibley  17:20

It is yes.

Gill Phillips  17:21

But it's just so, so clear, so simple, so visual, and well expressed, compared with the stuff that's written with 200 pages of small print. I'm going to include it in the notes for our podcast and I really recommend that people look at that, because I think, as a way of summarising our conversation on why this matters so much, it's just so clear, and so easy to read.

Miles Sibley  17:43

Well, thank you for that and I think, actually, when you boil it down to the basics, these things are really simple. There's nothing terribly complicated or difficult about it. It's about hearing from patients about their experiences, and why wouldn't you want to do that. And the interesting thing there is that I think probably every clinician knows the importance of that. When you go to see your GP, and you sit down, the very first thing the GP says to you is, "Tell me what's the matter". They want to hear from you and in fact they have to hear from you, because otherwise they don't know what to do. So I think at the one-to-one level, there is always, or nearly always, extremely good interaction and dialogue between clinicians and patients, there has to be otherwise the clinician doesn't even know where to start. But somehow, when we get to the institutional, the organisational level or the system level, somehow people lose sight of that. And all of a sudden feedback from patients becomes something that is too difficult to deal with, or "Oh well, we can leave it to the people in the panels team". And we don't even need to particularly train them to a level of being professionally qualified. And we don't need to collect all this evidence and make it available to people. I don't know what happens between that gap between the individual clinician and the kind of organisation or system level. And to your point, Gill, about why all this stuff matters. There's another thing there that I think is incredibly important, which is that I think people sometimes see people who don't take patient experience seriously, will sometimes take a view that, oh, it's just people grumbling about the car parking and the hospital food and all that kind of stuff. And we don't need to really pay too much attention to that. People will always moan and be dissatisfied. Now after the Mid Staffordshire disaster, which some people might remember, in the final report of that from the Francis inquiry led by Sir Robert Francis, an eminent lawyer, that report was in 2013. And one of the things he said in that report was that that disaster was 'primarily' (his word 'primarily') caused by a failure on the part of the Mid Staffordshire trust. It did not listen sufficiently to its patients. And he said that listening to grumbles and moans and all the rest of it, is really important because he described those as the early warning signs that something might be wrong and requires correction. And he's absolutely right. And in fact, when you look at the Mid Staffordshire disaster and all the things that have happened since then, what you see is that patient experience and patient feedback, yeah, of course, a lot of it is about things that might be considered a bit minor and a bit trivial. But actually, a lot of it is about really, really important life or death stuff. So with Mid Staffs there was again Sir Robert Francis, in his report described appalling suffering that happened because patients weren't being looked after properly, and their concerns from patients themselves and relatives, including bereaved relatives of people who died unnecessarily, were not taken seriously. And there's a whole series of these incidents so you can look then at Morecombe Bay and deaths in the maternity unit in Morecombe Bay and that report also said that patients and relatives weren't listened to. The same with the Southern Health Trust, deaths of people with learning disabilities where families weren't adequately involved in the investigations. The same at Gosport, the same in Northern Ireland with the hyponatremia deaths of children who weren't treated properly and then the parents weren't listened to. The same at Cwm Taff in Wales, maternity deaths there as well. And we will see in about two weeks time, Donna Ockenden's report on maternity deaths and harm on what appears to be a huge scale at Shrewsbury and Telford and again, patients and birth partners and relatives not being listened to. And it extends even beyond that. So, for example, Ian Paterson, the breast surgeon who performed absolutely unnecessary breast surgery on hundreds, possibly 1,000s of women giving them mastectomies when they didn't need it. Now he's ended up in jail, but again, women were talking out and I've already mentioned Baroness Cumberlege and the pelvic mesh, women talking out for years and not being heard. And after Shrewsbury and Telford report in a couple of weeks time, the next one coming down the line is from Bill Kirkup, who investigated maternity deaths at Morecombe Bay, and he's now investigating East Kent. So these disasters go on and on and on. And a common thread throughout all of them is patients and bereaved relatives not being heard. And Baroness Cumberlege referred to a culture of avoidance and denial, and other people have made the same kind of comments. And again, these are eminent people, Sir Robert Francis QC, Baroness Cumberlege , Bishop James Jones, at the gospel inquiry, Donna Ockenden, Bill Kirkup, these are serious, serious people who just keep saying the same thing over and over again, that patients are not taken seriously enough, and their feedback is not taken as evidence.

Gill Phillips  23:02

Yeah, I know one thing that really struck me when Sir Simon Stephens stood down as chief exec of the NHS, his key message was 'listen to patients'. So of all the things he could have picked, that's the one that seemed to be like the number one. And the purpose really of this podcast originally was, when I was named as an HSJ Wild Card, in terms of perhaps having a voice with the new chief exec of the NHS and I was thinking well, it's not me she should be listening to, Amanda Pritchard, it's all these wonderful people that I know, that goes back full circle that really to that was the message coming to her from Simon Stephens and now so strongly through all these different podcasts, so strongly?

Miles Sibley  23:45

Yeah. And again, I think in an NHS that openly states that it wants to be person-centred and evidence-based, why wouldn't you listen to patients? Now I know there will be people listening to our conversation will say, but hang on, we do listen to patients. And absolutely, of course, that happens right across the NHS. I've already referred to the way that clinicians and their one-to-one, their face-to-face encounters with patients, listen carefully and listen a lot, and treat patients with the kind of respect and dignity that those conversations require. But that's possible in a face-to-face conversation. But when you move up to the institutional, the system level, an organisation like a trust can't have one-to-one conversations with patients. So if it wants to hear from patients, it needs to do so in a much more kind of structured way. And this brings us back to the thing about how are we gathering the evidence? How are we analysing the evidence? How are we learning from it? How are we acting on it? Now, again, people might say, Well, that happens too. We have things like the Friends and Family Tests, for example. And there are huge volumes of feedback go through the Friends and Family Test. This is the one where, for many years, the main question was 'Would you recommend this service to another person?' And then there was a realisation that didn't really work all that well as a question in all sorts of medical settings. So it's now been changed to 'What was your overall experience of care?'. And then there can be kind of subsequent questions from that. But again, I think research has shown that Friends and Family Test is extremely effective in gathering the feedback, but it's not so effective in how staff then know how to deal with those large volumes of feedback. A lot of the comments that come in through Friends and Family Tests will just be one-off comments like 'the staff are wonderful'. Well, that's great to hear. And it's good for morale building, and so on, but doesn't really help you to learn anything in terms of practice or policy or quality improvement. So I think there are flaws in that as a process. And then the other main way that NHS organisations hear from patients is through the national patient surveys carried out by Care Quality Commission and NHS England. So we have adult inpatients and maternity services, and accident and emergency, children and young people, community mental health services, and then cancer patient experience and GP patient experience. Now, again, these are kind of huge surveys. They're done very rigorously and very well. And the great thing about these, particularly the CQC ones, is that they then publish these benchmarking reports, which help trusts to understand how they line up and the feedback they're getting from patients alongside similar trusts and get them to point as to, to what they can do about their strengths and weaknesses. But the only problem with that is that there's a huge gap between the fieldwork being done, the survey questions being asked, and then the reports being published. It can take months, even up to a year. So some of the staff and trusts will then say, well these reports are great, but actually, we don't really want to know what patients were saying a year ago. We want to, we want to know what they're saying now. So I think certainly efforts are made to hear from patients. It's not all bad, by any means. But there is certainly, certainly room for improvement. And again, I think that, in the world of patient experience, we could be learning a lot from how clinicians have organised their learning infrastructure, and built this absolutely world class health service, from a medical and clinical point of view. I think we need to start moving up those kind of rungs of the ladder, if you like, on the patient experience side as well.

Gill Phillips  27:30

And I think it's interesting hearing you describe that, because I guess that's where Whose Shoes workshops are so different in terms of collecting patient feedback, because it's now, it's immediate, it's whatever you want to say.

Miles Sibley  27:43

yes.

Gill Phillips  27:43

There's a scenario or a poem that prompts a conversation. But there's absolutely nothing about going off-piste, you know, off-piste is where it needs to be. We find sometimes and, for example, we did a whole spate of maternity workshops in the South West. And the workshops are geared so that you perhaps pre-select certain scenarios that are at the top of the pile in terms of the kind of things that you think people want to talk about. And over and over support for dads, support for birth partners, came through almost as the number one theme, and that hadn't been pre selected at all, it was just clearly what needed to happen in those particular areas.

Miles Sibley  28:22

That's fantastic. And I think that shows the power of these different kinds of approaches. And the approach that we're taking with the patient experience library, which is very much about let's gather the evidence, let's catalogue it, make it searchable, let's start developing ways to help people understand what it all is. That is just one route. And one of the absolutely fantastic things about the work that I do and the people that I talk to, is that, probably like you Gill, I meet and talk to other people who are also doing fantastic stuff in this area.

Gill Phillips  28:54

Absolutely.

Miles Sibley  28:55

But coming from different directions. And so I would mention people like, so for example, Charlotte Augst and the team at National Voices, they are doing fantastic work around health inequality. Basically, they're taking a view, I think it's fair to say this, that if we want to talk about patient experience and patient and public involvement, health inequality has to be central to that. And we can't carry on treating it as a sort of optional extra or something we'll talk about if we get around to it. It has to be a fundamental that runs through everything. And I think they're kind of making that their mission and because that also brings in the question as to kind of power and so on within healthcare, which is absolutely vital to this whole discussion. So they're doing wonderful work. I could mention James Monroe and the team at Care Opinion, online, real time feedback, completely unmediated. Patients say whatever they want about whatever matters to them, which is an important phrase to use. But also the great thing about Care Opinion is they're trying to develop this relational response. So to encourage and support providers in responding immediately to, or near enough immediately to, the comments that come in from patients and building a dialogue that isn't mediated by survey questions or whatever it might be. And also where the staff doing the responding are doing so informally and helpfully. And they're not being frightened by fears of oh there might be litigation if I say the wrong thing. So breaking down those barriers to dialogue and developing a relational approach to patient experience, that's wonderful. And then I'll also mention, Jo Hughes, who runs a website called A Mother's Instinct. Her little girl, Jasmine, died, probably avoidably. And she is running a website called A Mother's Instinct. And she also has set up the Harmed Patients Alliance, and her focus is something called 'restorative justice'. So what she says is that when something goes wrong in healthcare, as it's bound to, you know, healthcare is a risky business, things are bound to go wrong. But what you want as a patient who's experienced harm. There are these formal complaints processes, there are inquests, there are sometimes litigation, questions about compensation. And these processes sometimes need to be worked through. But for the patient or the bereaved relative, they can just compound the harm and make it all even worse. And what Jo is calling for is what she calls 'restorative justice', where, after an adverse event, patients or relatives and the healthcare staff are brought together to have open and honest and facilitated dialogue about what happened. And there's a really important point here, which is the staff themselves can also be traumatised by adverse events. When things go wrong, they're left with thoughts about what could I or should I have done differently, et cetera. And sometimes they also feel trapped by formal complaints procedures and being told, say nothing because there's a risk of litigation. And actually, sometimes what they want is to get it off their chest as well, and to share the emotional burden of some of these sorts of things. So this is the point at which we see staff experience being intimately linked with patient experience. And we need to kind of heal both sides. So wonderful people doing wonderful stuff. And we're doing our part of the jigsaw. But this is a broad picture. And there are plenty of ways in and people doing wonderful stuff. So it's great to see all that and feel part of it as well.

Gill Phillips  32:37

It's such fantastic work happening. And thank you for coming up with so many different examples. Some of them I know about and some of them less so. And again, to build those conversations and for us to be able to dip in and learn about other people's work. 

Miles Sibley  32:51

Yes.

Gill Phillips  32:52

Build the connections and so on. I think a couple of things from what we've said, really kind of jumping out at me to perhaps pursue a little bit more, one of which is, I suppose it's around this business of simplifying things. And we were talking about at a GP level, it's one-to-one, and then how at systemic, organisational level it all gets, in my view, complicated, over complicated. Language doesn't help with that. And I think you came up with a wonderful example, when we were talking before and I was telling you about some of our work around maternity and so on. And I think our Nobody's Patient Project sort of jumped out at you, the name. And you came out with this fantastic, how the NHS would probably take our Nobody's Patient title, and turn it into something a little bit more complicated ..., 

Miles Sibley  33:42

convoluted, yeah, because you were telling me that Nobody's Patient was about how people can feel lost on care pathways, they might be on a waiting list, there might be a transfer of care, or they might be getting referred from hospital back out to GP care, and so on. It's these so-called pathways, which sounds like a wonderful sort of thing, ah you just go down the pathway. But actually patients can often feel lost and not know where they're supposed to be next, or what's happening with the appointment and so on. So the idea of people falling between the cracks and being Nobody's Patient is a really great one. And yeah, and just putting in that very simple way, Nobody's Patient, we can all understand what that means and what it might feel like. But yeah, you sort of think the, if you can imagine an NHS policy document talking about that, they'd probably be talking about 'seamless care provided across the integrated pathways for the purposes of improved patient experience' or something it will be a horrible phrase, and nobody will be able to understand it.

Gill Phillips  34:38

There would definitely have to be a bit of patient flow in there as well, don't you think?

Miles Sibley  34:41

Yeah that's right. Just, just shoehorn every, every phrase you can into an endless sentence that nobody understands or can remember or knows what to do with it. So yeah, I ...

Gill Phillips  34:51

My all time favourite 'patient activation' would have to be in there as well.

Miles Sibley  34:56

Whatever that means. So yeah, I think yeah, boiling some of this down to simple, simple phrases. And I think, going back to Jo Hughes with her website, A Mother's Instinct says it all.

Gill Phillips  35:08

It does.

Miles Sibley  35:09

Trust the mother's instinct and hear what the mother is saying. Because she knows, she knows her baby. And you're Nobody's Patient. So yes, I think we talk a lot about trying to avoid jargon and acronyms and all the rest of it. But rather than an avoidance strategy, maybe we need a more kind of proactive creative strategy that is about giving people simple phrases they can understand and remember,

Gill Phillips  35:33

And I think another one for me would be around I suppose NHS, NHS England, are just so big. So you were talking about health inequalities, for example, it's obvious, isn't it? It needs to be embedded through everything. But obviously, there also needs to be a particular focus on it. So do you set up a separate team, the health inequalities for co- production, for personalization, for lived experience for ... ? I guess, for me, all these things that have just run through our work, you know, I set up Whose Shoes back in 2008. And it's been quite interesting to see how different 'in phrases' - thought diversity, that's looking at things from different perspectives, that came to the fore for a while.  

Miles Sibley  36:20

Yes.

Gill Phillips  36:21

It's trying to work out, isn't it? How to get these such important things running through everything we do?

Miles Sibley  36:27

Yes.

Gill Phillips  36:28

Rather than an add on?

Miles Sibley  36:30

Yeah, exactly. And I think that's always going to be a huge dilemma for any large organisation. And you always have the, the lumpers, who say this should all belong together. And then the splitters who say, No, we need separate dedicated teams to tackle each of these things. I once asked, some years ago, I once asked NHS England, whether there was a national patient experience strategy. I kind of knew there wasn't but thought I would ask the question anyway. And I was told, well no, there isn't a patient experience strategy, because it kind of runs through everything else we do. And I thought, Mmm that sounds like one of those things that's sort of everybody's job and nobody's responsibility.

Gill Phillips  37:09

Yeah.

Miles Sibley  37:11

I think that's always the danger, isn't it? That if you split things off, people can then say, Oh, we don't need to deal with that because somebody else is. And if you lump them all together, actually nobody deals with it. I honestly don't know what the answer is to that. 

Gill Phillips  37:22

No, I don't.

Miles Sibley  37:23

Maybe you need a bit of both. And I think when you look at, like I was saying, the people outside the NHS who are all doing these different bits of work in the patient experience space, what you see there is people doing different things from different angles. And actually, I think there is value in that because people then do develop their specialisms, and they're driven by a powerful motivation. And ... 

Gill Phillips  37:46

Yes,

Miles Sibley  37:47

that can get things done. But I honestly couldn't say which of the two lumping or splitting is ultimately best. it's probably a bit of both all the way through,

Gill Phillips  37:55

I think it's got to be both hasn't it? A specialist team perhaps to raise awareness of a particular need.

Miles Sibley  38:01

Yes.

Gill Phillips  38:01

And to get that momentum going for it to become everybody's job rather than, as you said so powerfully, nobody's responsibility really.

Miles Sibley  38:09

And I think the thing about then converting that so that it does become everybody's job. I think for me, that's where it comes back to this thing about what's the learning and support infrastructure for incredibly busy health professionals. Probably everybody in healthcare is doing about three jobs at once. They're all completely knackered and beaten by COVID, of course. They just need the help and we can't go on kind of berating them around patient experience and saying you must do better and blah, blah. Again, going back to the Shrewsbury and Telford report. I think there was a statement just the other week from the Royal College of Midwives saying something to the effect that we must learn from these mistakes. And I sort of think I'm sure they mean that. But after every inquiry Mid Staffs,  Morecombe Bay, Gosport, you know, on and on and on, Paterson, pelvic mesh, we hear these statements oh we must learn from these mistakes. But you can't just kind of hand that over to busy health professionals who are just run off their feet all the time and say, well you've got to learn from this. If we want them to learn, we have to help them. We have to build a learning infrastructure. We have to build it into their professional training, and their refresher training and their continuing professional development and their clinical guidelines and their practice protocols. And I know that's a hard job. But it can be done. If it can be done in medicine, it can be done in patient experience.

Gill Phillips  39:37

And I think there's also perhaps a softer side to that and in terms of human experience. 

Miles Sibley  39:42

Yeah.

Gill Phillips  39:43

That I think you've mentioned, Miles, if we can get people to see that staff experience and patient experience are not two completely different worlds. But actually, we look after the staff and they look after the patients better.

Miles Sibley  39:56

Yes, of course. Of course.

Gill Phillips  39:58

You know, if they see the genuine, 'thank you's, 'you made such a difference to me' and these things. So I suppose through our work, what we try and do is to tap into like that passion, you know, people want to improve things, but individually, what is it that you want to improve?

Miles Sibley  40:16

Yes.

Gill Phillips  40:16

What's really, really important to you? And then if you can fire people up in that way, whether it's staff or whether it's patients, or whoever it is, that they can actually they're not just a tiny cog in a big, big system, but they can individually make a difference.

Miles Sibley  40:31

Absolutely.

Gill Phillips  40:32

That adds up.

Miles Sibley  40:33

Yeah, it does. And it's funny, actually, because in some ways that comes back to the old things like car parking and food.

Gill Phillips  40:38

Yeah.

Miles Sibley  40:39

So people say ah patients grumble all the time, about car parking and food. But actually, these are absolute basics. And it's the same for staff. Give the staff free car parking, give them a decent hot meal. Yeah, these are absolute basics that show you're caring for the people who are required to care for other people. Of course, there's a lot more to it than that. But if staff feel burnt out, and neglected and pressurised to do more and more, and so on, they won't have the emotional resources themselves to look after patients in the way that they, the staff, would really want to. So of course, of course, look after the staff so that they can look after their patients. And again, these things are very simple. And I know people might say to me, well that's easy for you to say sitting outside the NHS not actually doing any clinical work, not trying to run a hospital and all the rest of it. But I think any organisation that looks after its staff, and the staff know that they're looked after, is going to get a better result out of them. Yeah, it is actually quite simple.

Gill Phillips  41:44

So simplicity, even though it's so complex to find simple ways of taking things forward and working with people as people, and I was just looking back at one or two ideas we'd had before the conversation. Creativity.

Gill Phillips  41:57

Yeah.

Gill Phillips  41:58

Thank you so much, Miles, for sending me that amazing negotiating the care maze in poetry. And that fits so well with us as, I think you know, we've used poetry right the way through Whose Shoes, and it just seems to reach people in a different way to cut to the heart of what actually matters.

Miles Sibley  42:17

Yes. Yeah. Just to be clear, that's a report from Health Watch. Essex, I don't want anybody to think I'm taking the credit for that.

Miles Sibley  42:25

No, not at all.

Miles Sibley  42:26

What a wonderful, wonderful report and takes testimony and feedback from people at the point of moving into care homes or getting a relative into a care home, and boils it down very cleverly to lines of poetry that really expose the raw emotion of all of that, that mixture of love for the person they want to be cared for, combined with exasperation with that very same person, the feelings of wanting that person to be cared for, but then feeling guilty that they're handing over their care to a care home or whatever, is powerful, powerful stuff. And yes, I think some of this work, all the evidence we collect in the patient experience, tends to be these kind of formal studies and papers and all the rest of it, which is really important. But sometimes again, this work of knowledge, translation, helping people get to the core of what these, what all this evidence is and what it means and why it matters. Sometimes that translation work can be done through art and poetry and that sort of thing, because, because at the heart of all of this, all of it is people and we relate to one another, as friends and neighbours, and family, and lovers and all the rest of it. So that needs to be borne in mind throughout.

Gill Phillips  43:46

I've just had an amazing lemon light bulb. I don't know what you think of this, Miles. So your inadmissible evidence is already simple. But it's what a 20 page document?

Miles Sibley  43:56

Something like that? Yes.

Gill Phillips  43:58

Albeit some of them have got, you know, just a visual. How about to finish this podcast, we produce between us some little poem that we could add on at the end, to turn that report into a poem to show what we're trying to talk about here.

Miles Sibley  44:12

Wow. That's a big challenge, Gill.

Gill Phillips  44:17

I can help.

Gill Phillips  44:19

Excellent.

Gill Phillips  44:20

Co-produced poem between us.

Miles Sibley  44:24

Okay, let's have a go. Brilliant. I think we've covered a lot of ground. And it's been really nice to be invited on, Gill, and thank you for that. And I'm sure you know, future episodes you'll be hearing from other people. And they will add to the rich tapestry of what you're bringing together. It's wonderful stuff.

Gill Phillips  44:42

Well, I'm hoping to have some kind of podcast party. So hope you come along to that. To bring these different people together. Why not? Yeah. So thank you so much, Miles, for joining me. That's been an amazing conversation, so rich, and I hope you get really, really good support for everything that you're doing because it's hard doing it as a small organisation. And I'm finding that small organisations are punching way above their weight. So we need to join people up and support each other and get support from the powers that be as well.

Miles Sibley  45:14

Yeah, totally. And thank you for doing what you're doing.

Gill Phillips  45:18

So Miles and I did indeed give the poem a go. This is the poem that we wrote together, read by myself and Mr. Whose Shoes who jumped in to help.

Evidence based

So you 'report', while I 'complain'.

Do your 'records' trump my 'stories'?

Your stats are 'hard'.  My stories 'soft'.

Does your 'evidence' beat my 'anecdote'?

Our evidence is strong.

Researched with rigour.

Distilled with purpose.

Into guidelines, protocols, training.

My testimony is strong.

Researched through pain.

Distilled with tears.

Into knowledge, insight, understanding.

So there's truth in your story

And there's power in your learning

So healing lies in hearing 

And together we are strong

Poem by Gill Phillips and Miles Sibley

Gill Phillips  46:24

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`