7. Carol Munt - why we need pirates!

Today I talk to Carol Munt, one of the HSJ top 50 ‘patient leaders’ in the country.

I love Carol’s  common sense approach to quality improvement in health care.  Carol has many different hats, including her own lived experience, looking after her mum with dementia and being a nurse in A&E!  I think this episode contains a lot of wisdom, so a great contribution to this podcast series which aims to collect useful insights for Amanda Pritchard, the new CEO of the NHS. A meeting with Carol would be wonderful!

Lots of lemon lightbulbs! 🍋💡🍋 
See 'chapter headings' for more detail and to pick out your favourite bits,  including:

• See patients as PEOPLE!! Recognise their strengths and help people contribute
• Don’t write people off, just because they are older!
• Coproduction is key,  otherwise known as  working together!
• Avoid jargon and acronyms. People don’t understand what you’re on about!
• Our NHS is so valuable, but becoming fragmented and divisive
• Addressing inequalities is the only way to improve healthcare across the board
• Fitting around what matters to patients … matters!
• Too many people are falling through the gaps.
• Be proud of your improvements and share them, not keep reinventing the wheel
• Support the best … through a Festival of Ideas!
• Patients need to be involved, including in the BIG decisions
• Healthcare professional to patient: it’s  very different on the other side of the fence
• Don’t just listen to ‘people like you’
• Pirate share the spoils – equally!

 Oh, and it's not everyone who writes a poem about me. So thank you for that.

Links and resources
Carol’s poem about coproduction - and @WhoseShoes! https://twitter.com/muntma/status/1392760141896953856?s=21

Carol is one of the HSJ top 50 Patient Leaders: https://www.hsj.co.uk/supplement-archive/hsj-patient-leaders-2015/5087441.article

Fab NHS stuff : https://fabnhsstuff.net/
Sharing best practice – #VirtualWhoseShoes :  https://fabnhsstuff.net/fab-stuff/the-whose-shoes-phenomenon

'10 Leaps' report - Professor Becky Malby:
NHS Coronavirus Report_A4_R6 (lsbu.ac.uk)

We LOVE it when you leave a review!
If you enjoy my podcast and find these conversations useful
please share your thoughts by leaving a review (Apple is easiest to leave a review) and comment on your favourite episodes.

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

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

Transcript

Gill Phillips: 0:00

Okay, so today, it's my great pleasure to welcome my pirate friend, Carol Munt, one of the HSJ top 50 patient leaders in the country. I'm delighted to speak to you Carol, as I like your common sense approach to quality improvement and health care. Really pragmatic and down to earth, you have so many different hats and lots of fingers in pies. Oh, and it's not everyone who writes a poem about me. So thank you for that. Could you tell us a bit more about yourself? And what's important to you, Carol?

Carol Munt: 0:33

Yes, I will and thank you for asking me to, to sail with you.

Gill Phillips: 0:40

In our ship?

Carol Munt: 0:41

Yeah, I won't jump ship, I'll carry on. I got involved, speaking about patients and how being treated by the NHS was affecting them, when my mother was ill. She had dementia and vascular dementia, and I would, I would drive her to play bridge with her friends in the early stages. And when I picked her up, I'd say "how were they?", and she'd say, "Oh so and so's operation's being cancelled and so and so hasn't had physio", and, you know, bemoaning the fact that it appeared to all of these ladies that once you get to be of a certain age, the NHS doesn't care about you anymore. And the irony is that that was six years ago, something like that. I was already involved with the NHS at that stage. But the things that my mum was saying like, you know, it appears that the NHS or the health service doesn't care about people that are older has really come to roost with the fiasco of visiting in care homes. And I suppose the nitty gritty of it is that the health service treats patients, or treats people when they are in hospital, as though they are a condition that needs to be diagnosed and treated, and misses the bigger picture of the fact that patients are people, and we're all different, and a lot of us have got things to offer the NHS. With COVID, it appeared that came to the fore when communities were making scrubs and masks, and people with 3D printers were making face masks for the NHS because, without going into the politics, there wasn't enough equipment around. And so I think a message needs to be taken from this and that is that it's no longer acceptable for there to be a divide between the NHS and the people that the NHS treat. And I'm using the NHS as a blanket term here because the NHS, to me, is all the people that work in a hospital or work in the community. It's the doctors, it's the ambulance drivers. It's everybody involved in somebody's health. And I think we use lots of different words in the NHS, which make it somewhat difficult for people to understand sometimes. There's a terminology'NHS speak', because some of the words that are used are just much too difficult for the normal person to understand. The acronyms that are used are extremely difficult to the point that sometimes I'm sure even the NHS people don't understand them. So I'm a passionate advocate for co-production or whatever you want to call it. I'm a passionate advocate for patients being involved with staff to actually improve and better the relationship between the two and also to be involved whenever there's a strategic decision being made about patients. The expression'nothing about me, without me' was marvellous when it came out. But I think we've got a terrible tendency to come up with expressions and to come up with pilot projects and to come up with massive ideas and they run for six months and then they're put on the back boiler. So anyway, that's pretty much where I come from. I, personally, Ive got type one narcolepsy as a result of a serious road accident where I had a fractured skull and a brain haemorrhage and was in a coma for a period of time. And then flying back from France where the accident happened, flown back to the UK and that was when I was 38, so I've had it for a few years now. So I've seen the inside of hospitals and also I'm a qualified nurse, so I've actually seen it from both sides of the fence. That a good enough explanation of me? I mean, there's lots of other words that people use, but some of them probably not repeatable.

Gill Phillips: 5:05

I think it gives an insight into you, Carol. And I think I find it fascinating when, I guess the fact that people like to put people in boxes, and you really don't fit in a box, but actually not very many people fit in boxes. But for you, you know, it's obvious if you've been a member of staff and a patient and caring for your mum. You know, I think that's what I meant at the beginning by you've got so many hats, and I think that gives you such a richness in terms of insight.

Carol Munt: 5:34

People fascinate me, I mean, photography is probably my main hobby, and it's photographing people. And, you know, when I travel, it's photographing people from a distance or photographing them at work and all the rest of it. And, and I think having travelled a lot and having seen different cultures, it really brings it home that in the UK we are so fortunate to have an NHS service, a National Health Service. But we're abusing it, if you like, in as much that it's not a national service anymore. It's so fragmented. And people are being set up in competition with each other and hospital financial, Foundation Trusts, rather. See, that's a slip of the tongue but I mean correct. There should be hospital financial trusts, really, because that's basically what it comes down to, competing with each other for business and to be profitable, not the sort of profit that is commercial, but to keep, you know, to keep the hospitals going. And I think I don't like the fact that in some areas, you've got a hospital that's got a fantastic reputation, and they're doing amazing things. And yet, they don't share it with other people. So one end of the country can have a hospital that has got a fantastic record as far as strokes are concerned. And the other end of the country, you can have a hospital that's got an absolutely dismal record as far as stroke is concerned. And that's not a national system. So I really do wish that we could get away from the silos and start sharing information more. And accept that this is a system for patients, it's not a system for the people that run it to use it as a tool if you like. So we've got to be involved far more in decisions that are made about hospitals, about where they're situated, about what time clinics are run. You have clinics, the opthalmic clinic, a good case in point, kids that are being called out of school lessons to go for an opthalmic appointment at 12 o'clock, midday, or two o'clock in the afternoon, when really if the clinics put it down that they would see the children before school or after school, it would stop them being labelled at school, it would save the parents having to take time out of work, and it would be a lot better for all concerned. But that sort of thing isn't going to happen unless somebody says,"actually, can you make it a bit more convenient for me". So ...

Gill Phillips: 8:15

I think you're hitting upon so many things. And I think that whole fitting around the person and that's a really good example children's school, you don't want to be disrupting their education. And then you've got the family that sits behind it. So if mums got to, or dad's got to, or whoever it might be, come and collect the child and make a big deal and take them off somewhere else. Whereas if things can happen in schools, and and then I've seen something recently about, let me think what the example was. So children in reception being monitored, you know, they're new in school, so you monitor them for weight and height. Okay, last year, because of COVID, there wasn't much going on in terms of monitoring anything in schools, the children weren't at school, they were home learning. So if you're now in year one, does that mean that you miss out on that check? Or does it mean that you know, they've got to like double the capacity, because theyve got all the new reception children, and some of the people then end up falling through these gaps in the system? I think just following up on some of those things. And the other one, the other thing you mentioned, which I thought was really interesting was the whole question around sharing good practice. And we're both members of the beneficial changes network. And this seems to be a very important and impressive drive already to share things more, but then I think of things now, I don't know what the answer is, but I think of the kind of culture of awards in healthcare. Now, awards could be improving standards, that's good. It encourages people to share good practice, which is good, but you have perhaps a winning team or you know, someone who doesn't put their entry in and how the whole culture of awards makes people feel and whether it actually increases the sense of competition between people. So that's again, like a Whose Shoes perspective in a way exploring some of that? How do we share best practice in this public service? And you mentioned like a hospital at one end of the country or the other end of the country? Sometimes it's quite local, isn't it? .., someone doing some really good practice. And someone up the road could really benefit. Do you think? I mean, what's your experience with that? Do you think that's really improving? Or is it just sort of hype if you like?

Carol Munt: 10:27

Well, it's interesting, what you say about awards. I gave a talk at the King's Fund,, it was about four years ago. And I said, I'm one of health service Journal's top 50 Patient leaders, but I think it should be the top 500 because there's 499 other people out there that have done work that, you know, is equal to what I've done well, not necessarily that- they have done a lot more than I've done and a lot better and I said that, you know, the sad thing is that awards can only you can't give everybody an award. So it's almost like saying, Well, in that case, don't give anybody an award, but just share the stuff that people are doing. And I used to say the NHS is bad at sharing stuff. And now I say the NHS is selfish, because it doesn't share stuff. Because I think if you wanted the best treatment possible, you'd be on your bicycle going around the country knocking on doors all over the place, saying, Oh, can I have my hip down here? And can I have my eyes done there? And, and what have you, and that's not, it's not acceptable. So I don't know how you share? I don't know how you do it. I think there is without doubt a culture that says, Well, we are going to invent it here. And that there are so many wheels being invented in this country that the mind boggles. And of course, every time somebody starts from scratch, there's money wasted, there's time wasted, there's effort wasted, when if they just bothered to see what everybody else was doing, or people bothered to share what they were doing, it would be so much easier and quicker, and improvements could be made with hardly any effort at all. And that, that bugs me, it really does. I was involved in a project about the frontline staff reaction to patient feedback. And it culminated in one of the teams work taking action on the fact that patients had said that the wards were noisy at night. And that that stopped them sleeping. So this team spent quite a lot of effort in finding earplugs, and face masks and, and stuff to go around the lids of bins. So they didn't make a lot of noise and everything and they were so chuffed with themselves that they got this system all together. And then I said yeah, if you'd looked you'd say that St. George's did that four years ago and you could have got all the information from them which would have saved you you know, looking at how much you reckon that this cost you to put it all together. So what is the answer? Should you have to register when you do something good? Or is it just assumed that is part of everyday working? I don't know because people are incredibly proud of what they do and there's some fantastic stuff going on in the NHS and there are people working in the NHS who come up with amazing ideas and somehow or other if I do something good I kind of maybe it's the fact that my father was American and you know the Yanks think differently to us but I think if I do something good or find something good I'm I'm as happy as Larry that I can share it with people so I don't quite understand. I mean I'll share the stuff that you do Gill because I think it's so it's so good and so useful. And I don't understand what it is that stops other people sharing good stuff. I mean, my grandson's just got a first in maths and philosophy and I think my friends are probably bored rigid with me saying Yeah, he's got a first . He rang me up and said he'd got a Damian and I said What's that? And of course a Damian Hurst, a first, keep up Granny!

Gill Phillips: 14:16

Keep up granny!!

Carol Munt: 14:17

Yeah, wake up. Yeah, I've only just got used to the bit about oh, that's sick. Oh, won't he like it? No, Granny, that's sick. That means he will, now that means, something totally different. And Ive only just got used to the last one. But I been I mean, why? Why is it that there's this reluctance to say that we're good. I think if you've done something good shout about it and let other people have the benefit of the work that you put in and particularly bearing in mind that I'm talking about this in relation to improvements for patients. And sometimes for staff as well. Why are we not sharing it so that patients all over the country can have the same benefit, that floors me,

Gill Phillips: 15:01

I think you've touched upon something very interesting there in terms of the human psychology and some of the stuff that we do through Whose Shoes you know, we try. And we come up with booklets of case studies and try and pick things that are readily transferable or very easily adaptable to a different place, and people will like them. But there's also an energy around things that have come from your team. And where so and so does this and then so and so adds to it. And you get that kind of like team spirit. I think, you know, if the examples you've given there in something like noise is not unique to one hospital, you know, patients are there, they're in bed, if they're like me, they don't sleep very well at the best of times, and noisy bins, noisy doors, people with voices, the whole trolleys or whatever it might be, so that would be a very easy one to sort , for someone to look up and see how can we improve noise levels, and it doesn't have to be from scratch. And some of the examples in neonatal units, I've seen a wonderful place where the lighting was just so low, and everything was geared up as this is how it is, that is the norm, very, very, very quiet. And they got like little systems that showed that, hey, the noise levels are getting a little bit high here in a very subtle way. And I don't know if that exists uniquely there, as it was actually in Ireland, or whether it's pretty much everywhere. I mean, obviously, with Whose Shoes, I'm sort of dabbling in so many different subjects, but just try and like put an idea out there. And people might say Oh, yeah, you know, that happens everywhere , sometimes they think it does, but it doesn't. I think people are very quick to say Oh, yes, yes, we do that yeah. Rather than to reach out and pick up subtle improvements somewhere else and keep improving, keep growing really. And of course Carol, there is Fab NHS stuff isn't there?

Carol Munt: 16:48

Fab NHS stuff is unbelievable. I think it started I think it's, gosh, I'm trying to think how many years it's been going. I know we got picked through in the learning together programme in Oxford, we got picked as one of the runners up for their first awards that they handed out. But the way that Roy Linley has organised, it is brilliant. If you've got a really good idea that you put into practice, then you just send it into them. And it's up on their website. And their website gets hit every day by 1000s of people in the health service. So it's a brilliant way of sharing stuff. But over and above it being just on the website, there are annual events and theh fab NHS ambassadors. It's a whole movement about sharing and getting good practice spread to other people. And I suppose really being unselfish. So yeah, fab NHS stuff, look on, look them up, they're there, they're well worth the visit, and basically cover every aspect of things. And whenever I give talks to people, I always mentioned them.

Gill Phillips: 17:55

So I'll share a link when I do the the notes from the session. And people can dip into that with us both highly recommending ,

Carol Munt: 18:02

thanks. I know we have Expo or we did have Expo that's the the annual thing where initially it was pretty much suppliers to the NHS that were showing their wares, so to speak. But then it became that the academic health science networks which show what they'd been doing, and over the last few years, it's been that different hospital trusts can actually show the good work that they've been doing. And I do wonder whether or not we need to start thinking about having a national event where each hospital sends a team that shows a new innovation or a new idea or a new concept, and makes it obvious that we come up with this idea. The results were so much better for patients and that means that they were so much better for the staff and you're welcome to follow that take it on from us. I mean the Always events with the different things that they do, that's easily shared. There's a glitch somewhere in the system. People at the frontline are happy to share stuff, people who are working on it are probably happy to share but there's a little glitch somewhere that actually stops it becoming a you know, a national project or national thing to share stuff.

Gill Phillips: 19:21

And I think when you see someone doing really good work, so I've banged on I think you in one or two of these episodes already about the work of Professor Becky Malby. During the pandemic, she came up with the 10 Leaps report really, really early in terms of good stuff that was happening community stuff, like you say people jumping in and making PPE and how are we going to hang on to all of this? And I know quite early on she came up with the idea of a festival of ideas. Yeah, so it sounds very, very similar to what you've just suggested. Wouldn't that be amazing just to bring people together just doing good stuff and for other people to be able to think oh, you know, we could do that or we're doing that, and just share everything around. With a spirit of excitement, I think, rather than this kind of, um, the expression you used, you know, we need to invent it here. As you were talking then Carol, I was thinking about a wonderful parent that I've started to work with in the neonatal world, I expect she'll be a podcast guest at some point. And she came up with going along to a meeting, whereby she'd introduced herself as a parent. Now she's also an academic doctor, but she'd introduced herself as a parent. And if I say there were lots of men in suits in the room. Yeah, probably slightly derogatory but true. And they weren't listening. And one of the people there was very supportive of her. Basically rephrased hardly rephrased, basically said, again, what she'd said, she's very articulate woman. And oh, yes, suddenly, we all get it, because it's come through, like the official healthcare channel, rather than the, you know, perhaps overly emotional, you know, the expectations, the stereotype of a parent in the room. And I think people who've got, as you have, that dual or more different perspectives in terms of being a healthcare professional, who's also on the other side of the fence with lived experience, it's hard to argue against, and it's quite an interesting angle, but it shouldn't need to be like that, you know, I think we've all had experiences where I just see people saying, I had no idea what it was like to be on the other side of the fence. So people who know the systems and the theory, know how to navigate the systems or as much as any mortal could do, yet , suddenly, when it's themselves or their relative, or something that's very close to them, you realise what kind of maze it can all be, and things stacked against you.

Carol Munt: 21:49

Well, look at what happened with the Hello, my name is - where you've got a hospital consultant, who suddenly finds herself, a patient diagnosed with terminal cancer, and is in bed in a hospital and realises that the people in the white coats are just coming up and grabbing her arm and saying, I'm just going to take some of your blood and, and she was saying, Well, you know, who are you? And it was almost as if well, you know, doesn't matter who I am, I'm, I'm the technician, that's come to mean, you know, that the the inference is that, you know, well, I'm here to do a job and you're just the patient that I'm doing the job on. And that's, that's kind of started the whole thing about Hello, my name is, you know, introduce yourself, say who you are. The number of times that I get a phone call, or I make a phone call to a hospital for some reason. And I'm saying , you know, right, I'm Carol Munt, I don't know, who are you? Ah, you don't need to know my name. So I say, Well, actually, I'd prefer to know it. Well, we're not allowed to give names out. And I think, Okay, well, that's number one complaint. that I'm going to make and I don't mean, I don't want to be in a position where things are happening. And I think I've got to raise that as an issue because that isn't good enough. It's, I'm very outspoken, obviously, as you as you might have gathered. But there are a lot of people who aren't and the number of times I've said to somebody, how did you get on? And they'll say, well, well, I don't know, really, I couldn't understand what they were talking about. You know, it's a What is that? The joke, I came up with a couple of really bad jokes, and one was the consultant says to the chap in bed, well, I see you've got a DVT. And then the chap says, No, Doc, I watch films on my i-player these days, where you've got to be of a certain age to appreciate that, but I got that. Yeah. But I think that that that is the thing. I mean, all patients are not being treated as people. If you want me to give one message to the new head of the NHS, it's this. Please see us as people and accept that. As I said, the Kings fund were an incredibly wealthy source that you can pick on. I said, I was looking, I'm looking at a room of 200 people who are experts in what they do. But if you guys all went home, and deputised somebody else to come and take your place tomorrow, I'd be looking at another roomful of expertise, it would be a different expertise. I'd probably have bank managers, teachers, cleaners, you know, salesmen, all sorts, but everybody's got something to offer. And when you're thinking about designing something new, then it's worth looking at it from everybody's point of view and not looking at it purely from a clinical point of view. Because some of the projects that have been done purely based on clinicians deciding what was The best for the patient have flopped dismally because actually that's not what was best for the patient so So my message is this please treat us as people because that's what we are.

Gill Phillips: 25:12

That's amazing Carol I think you were talking earlier about you know, the the phrase patient leaders and how many people have got something to offer and obviously all those different conditions that people have lived with all that different expertise that they can bring, you don't want to get to a point where you've got representative patients - if their particular condition is x, then they're an expert in themselves and to a large extent an expert in that condition. But if you're talking about, I dont know, eyesight or breast cancer or whatever it is, you want people coproduction needs to be with the people that are actually affected by you know, whatever's going on and they're the ones who have the expertise to bring. Do you think coproduction the NHS are talking about it being default now in the NHS, well that kind of language worries me a bit because you know, default might go with a tick box somewhere but on the other hand, in terms of it being picked up as something very important and starting to be the way we do things around here and how that might evolve naturally. What are your thoughts on that?

Carol Munt: 26:20

Well, I think it's quite interesting that we have to come up with the terminology about coproduction and I mean, the word coproduction is open for debate the word default is open for debate. So what do we do maybe we just say we'll do it together. I mean, that's basically what we're saying that you know, in future we'll work together we'll talk about things and we will actually involving patients who come up with ideas is actually beneficial for the staff as well as for the patients and and I think one of the things that I've been trying to do since I was picked up as a patient leader is do find other people who are equally passionate about the NHS but who perhaps haven't sort of been as ready to bang on doors as I was and so I think there are several opposite really passionate about the NHS really do care about it. But because it it's not a closed door, it's not the Masons I mean, it's not a closed organisation but it does feel like that sometimes and I think we've got NHS people the big drive with the NHS people and sometimes when I try and click in to get in on something for that I'm shut out because I'm not an NHS person or a patient and I'm thinking I don't see how you can't be an NHS person if you're a patient because surely that's what the NHS is all about. So we have to start pushing to be recognised as part of the team because there's an awful lot of energy and an awful lot of expertise out there waiting I mean, simple thing the talk I gave at the Kings fund was picked up by the Open University and then they've been using it on one of their health courses for the last I don't know four years or something. Well, I mean, I am passionate about involvement as you may have gathered so yeah, we're people but users you know and patient I mean yeah, we're patients when we're in bed in a hospital but we do actually get up and put on our Mufti you know, day clothes, and go out into the big bad world and, you know, have jobs and families and, and drive cars or ride horses or you know, or perhaps some will live in a, you know, in a super big house and some will live in really grotty conditions that that should be improved. And without realising that there's more to a patient than just the diagnosis. We're never going to get anywhere because however, the conditions that people have a bolt on by a much wider problem than illness is wise. Why do people have certain illnesses? Why have they got certain conditions? Is it something to do with living conditions, employment, education, what? So if you don't look at a patient as being a person, you ignore all of the things like that, and that, that's pretty crazy, right? Because then I firmly believe that unless you treat patients as people, you can diagnose a condition and you can prescribe a treatment but unless you actually get to know them as a person, you might as well be wasting your time. Yeah.

Gill Phillips: 29:36

And I love the themes that are coming through, although it's so early in the podcast series, and the fact that they're coming from different perspectives. So the episode I did with Dr. Farzana Hussain and the frustrations of a GP in terms of trying to help children with asthma but you know, they live in damp conditions, yes, those kind of examples. So I think Carol I think in terms of your messages for the chief executive, we've had some real lemon lightbulbs, I think teamwork, using the expertise of everyone, whether it's patients, whether it's staff, but that the energy and the willingness to actually be part of this is there. And the kind of final message, let's work together. And let's not care whether it's called coproduction or whatever labels we put on things. My acid test is that you can go up to someone in the street, and they would understand Let's work together, the jargon they might not. So let's just go with the the plain English.

Carol Munt: 30:34

I think that's a good idea. And I think maybe that's where pirates came into, you know, the original concept of pirates came into it, because they cut through all the BS, and got down to the basics and realise that everybody on board ship had to be treated equally had to have an equal, equal share of the spoils and had to have an equal share of the food and all the rest of it had to equal living conditions. And I think getting rid of hierarchy and you know, working, let's just all muck in that and work together. And I'm sure that that will have a much better result all round and it will be much better for the staff, let alone the patient. So yeah, I'm all for that.

Gill Phillips: 31:18

Okay, well, I'm delighted to be with you in your pirate community. And thank you so much cow. today and onwards and upwards. No boy, bad boy, is it Thanks.

Carol Munt: 31:30

Thank you.