5.2 - Deborah Duval. Let me live! Life as a transplant recipient

Aural Apothecary Episode 5.2

Jamie:

My name is Jamie Hayes. For this episode, we're joined by Deborah Duval. Deborah is a patient, she's a multiple organ transplant recipient, two kidneys and two pancreas over the past 35 years. She's also a managing editor and lead in the Kidney Kitchen Project at Kidney Care uk. We will welcome Deborah in a moment as she shares a drug for our formulary her career anthem, and recommends a book for the Aural Apothecary library.

For our micro discussion, we continue our look at the recent Sunday Times article. The NHS is Flatlining. Here’s how to save it right now by health editor Sean Linton. Although after Graham's critical appraisal of it in our previous episode, I'm confused to how it's not on the cutting room floor. Listen, it's a podcast about stories and the relationships people have with their medicines.

That's what we're trying to do, talking of relationships. Let me welcome my two fellow Apothecaries STC is in Bournemouth and Gimmo is in Cardiff Evening. Good evening. F N P = Friday Night Pod

Gimmo: I was gonna say it's a Friday recording today. So, there's a, there's a slight edge to the proceedings I think in the preamble.

So good couple of weeks for me. We've talked on the pod before about the behaviour change wheel. So myself and Jamie actually were at the launch of the behavioural change community of practice that Public Health Wales is running. And so the, one of the people behind the wheel, professor Robert West was there, was fantastic and they've launched a really useful guide to implementing the behaviour change wheel in practice, in clinical practice. So I just wanted to plug it because I don’t know about you Jamie but I was really impressed by it. I thought it was really nicely written step by step guide to how you might use it in practice.

Jamie:

I was so impressed by it I invited him on the podcast for series six and he's agreed.

Gimmo: Yep. So he is a future guest. And then I also went Jamie to your old stomping ground. So the pharmacy department in the Princess of Wales, which I believe is where you were born.

Jamie: I wasn't born there.

Gimmo: Yeah. So some of the older members there did remember you, But I got a few eye rolls when I mentioned you, so we'll move on to

STC:

Oh, that's where the oil of Wintergreen story

Jamie:

Yeah. My clinical paces back in the day.

STC: I was doing some teaching this week and decided to use the Mentimeter. You know, you can get a word cloud. So here's a little question for you, the listener as well as you guys. First question I asked them was.

These were pharmacy professionals who work in primary care across the UK, not just England. Describe the state of the NHS in one word. What do you think the most, you know, in a word cloud, it's bigger if more people say it. What do you think were the top four or five Broken , Armageddon? Broken was in there, struggling, disjointed, overwhelmed.

Second question. Describe your current job , in one word, this is pharmacy professionals working in general practice in primary care. Medicines. No, nobody mentioned medicines. challenging. Interesting. Rewarding and busy. There you go. The second thing I want to give the listener is a stat now, because we all get very excited about medicines on this podcast and medicines are everywhere, aren't they?

And I was thinking we need a strap line if we haven't already got one. We need a strap line. So there I was straight into the last year's census, so I worked out how many people, sorry guys, this is only in England because the census was for England. People over the age of 20 worked out how many. 43 million people!

Jamie: Very good. Okay. A couple of things from me, look as part of the editorial process for our last episode, Graham, our guest wasn't keen on listening back to his own voice, and so he asked his brother, Colin, if he could review it for him.

So then we were copied into Colin's feedback to Graham, and it is one of the nicest letters that you'll get to see. And so I've just picked a few highlights. I, I have checked with Colin if it's okay to use this. And so, but not Graham, thank you so much for letting me listen in with my family hat on. You may be proud, and I think Dad would've been beaming with my patient hat on.

I found your theme challenging and very refreshing. The last hour has been a rare privilege, so thanks Colin, who also has some very nice things to say about the podcast too. I've deliberately selected the bits that didn't make me cry. My second one, look is, is a quote from a quick piece in the BMJ from a GP educator and supervisor, Dr.John Lorna. And it's titled "On Being Stuck" and we've talked about being stuck in various guises, on the pod over the last few series. Here's his quote. I've had hundreds of conversations like this over the years. They don't work by offering magic, but by resisting the temptation to offer it. They depend on listening to people's stories and carefully creating a space for them to evolve at their own pace.

They also depend on recognizing that the only person in the room you can ever change as yourself. So we'll put the link in the show notes, but it's a powerful piece on supervising some complex things in general practice, in particular in primary care. Okay. Let's move on. It's a great pleasure to welcome.

Deborah Duval to the Aural Apothecary As I mentioned, Deborah is managing editor and lead in the Kidney Kitchen project at Kidney Care UK. She's also a multiple organ transplant recipient. She has a passion for demedicalizing food for people with chronic kidney disease. Debra has brought together a team of professional chefs, kidney dieticians, photographers, and videographers to create a repertoire of tasty, colourful kidney friendly meals and dietetic advice for people living with C K D.

All filmed and photographed in a kitchen in Cornwell. So a cookery program from Cornwell. Not sure what the thinking was there. , it'll never catch on.

Deborah is also Editor of Kidney Matters, a patient focused magazine with over 20,000 patient and associated professional leadership. Chronic kidneys disease is for life, and Deborah has been interviewing patients and professionals for over 24 years.

Welcome to the podcast.

Deborah: Thank you very much. I feel deeply honoured to be here with you three. Thank

Jamie: Very good. Lovely to have you on

STC: Honour's all ours. We're in awe. I mean, somebody that's had four transplants, I mean that we should all be in awe of that.

Deborah: I think they're such simple words and they hold such a hidden depth of anguish and pain and fear and when you hear that you need a transplant, you just think someone's going to offer you a transplant, you're gonna have an operation, you're gonna walk away from it and everything's going to be normal. And that's not what happened. So I think when I speak to other people that have had transplants like myself, we speak common language.

There's a not understanding between us all, we all know what we've been through in a way that I know what dialysis feels like and people think, oh, well, you've got kidney failure, but at least you've got dialysis. And that's okay, isn't it? Well, it’s not okay. It's a hellish experience and for the patients that have to go through it either every day of their life or every second day, It's crushing, you know, it stops normal life happening.

I don't care what any of the brave people say, I absolutely hated every single day of it. But, you know, life goes on, medicine improves, surgical procedures improve, patient knowledge improves. And here I am, you know, working full-time in my mid-sixties. So and really loving my job. I really love my job so it's what it is

Jamie: So yeah, full-time. I can vouch for that. Cause trying to catch up, get hold of Deborah in the last couple of weeks has been a, yeah, London this week from Cornwell.

Deborah: Yeah, that's right. Exactly. So I'm home now. Quiet, peace and quiet and normal life and decent food. I always marvel at how little willpower I have when I'm away.

Yes, yes. Cook breakfast. Yes. Meal out. Yes. Let's have lunch as well. And I have to be so strict to myself in my normal life. I'm not a big person and  I just think, oh my God, what am I doing to myself? Why am I eating this food? It's so delicious. But I'm just glad to get back to my porridge in the mornings and my daily dog walk and working.

Yeah. The hours that work for me rather than having to march to the beat of other people's drum, if that makes sense. I could never do a nine to five job. It's not something I can do and I'm sure you don't either.

STC: So Debra I was listening to your video about the kidney kitchen, and you said that you'd previously had one transplant, which unfortunately had failed within a couple of years.

Then you ended up with the second kidney transplant, which is still going strong. 20 years I think you said. . But what I thought was most powerful about what you said, and it was very honest, was that you perhaps didn't pay enough attention to, in particular, you said the diet and the fluid restriction in the first time round . versus the second. You mentioned the first thing you said and it caught my attention because when we talk about medicines, for example, in blood pressure, we everyone, or immediately reaches for the prescription pad, whereas actually reducing your salt if you eat a lot of salt is as effective. As starting somebody on a medicine and there's good, good you know, evidence for that

Deborah: absolutely. And when I'm talking to patients and I speak to a lot of patients, they're hugely privileged to, to be able to do that. I always say to them, you know, there are four, well, possibly five foundation stones for ensuring or doing the best you possibly can to have a long and happy life. And for me, and we'll come onto that in a minute.

I don't think a lot of the prescription drugs we have are treating the person. They're just treating the condition. But what I say is, eat the best food you can possibly afford to buy. Exercise, even if you just can walk to the end of your garden and back again if you are. Prescribed to take some medication, look into it, understand why you are taking it, make sure you feel happy with it.

But then bloody well take it cause you're not being prescribed it just for a joke. And I do know a lot of patients that just don't take medicine that they're prescribed and will come back to this and manage stress. So managing stress is, Incredibly important. And that comes back to your issue about blood pressure.

It is about finding a place in your mind where you accept what's happened to you. It's brutal. Other people don't understand you are judged. Relationships collapse, but. Find your tribe. Right. So the internet has been a great step forward in that. So Facebook groups, WhatsApp groups, the internet, it was a very isolating experience 35 years ago with none of that.

So I walked into a hospital one day. I had a good job, good career prospects, newly married, couldn't wait to start a family, a big family with my husband and I, you know, I walked. High heel shoes suit. Knew I wasn't feeling very well and I walked out. I was crushed. I thought I am worthless. I have no purpose in life at all.

Will my marriage last? I've got to start thinking about working part-time. I pay the mortgage, so I'm the, I was the major wage earner, so it completely devastated me. . On the one hand I'm saying you have to find a place to accept it, but that doesn't happen overnight. It's their process, and I think as soon as you realize you can't ever walk away from it.

After my first transplant, I nearly skipped outta the hospital. I thought that's it. I'm so out of here. If anybody else shows me the inside of hospital ward again , I will just scream. And of course, three years later. One of those transplants cause the first transplant was actually a pancreas and a kidney.

And within three years the kidney had failed. And I was staring dialysis in the face again. And, and then I realized two things like this is it like I have to find my life around this condition. And the other thing is, I need to be part of it. I can't just work outside of this condition. I have to come into it and I have to use whatever skills, I have to further the cause of other kidney patients and be an advocate and, and fight on their behalf.

Because some people, for whatever reason, maybe English isn't their first language, maybe for religious reasons, maybe. , they are just naturally shy people. They feel grateful somehow to be invited into the conversation. And, and they're quite meek in the, and that, you know, if you go into a meeting where they need a patient's perspective, they don't say anything and they're just very grateful and well, yes, I'm, you know, and I, I feel all right and I, I'm so lucky to have such great care around me, but nothing changes if you don't actually speak up and I haven't said very popular things sometimes, you know, but I've seen things change

Jamie: Very powerful. Deborah, can I just bring you onto that in our last episode? Graham joined us and, and talked to us about the moment of your diagnosis or the moment you handed a prescription.

You become project manager. Is that something you've recognized?

Deborah: I do, but then I have the ability to project manage, and I know that I would say the majority of patients don't but they might not want to. So I accept that there are many patients, they just want the prescription passed across the desk,go away, take these tablets. See you in three months’ time or six months’ time. I am lucky, you know, I'm educated. I can do research. I can find out what drugs are going to do to me other than tackle the problem they're meant to, and I can decide whether I find that acceptable or not, and a lot of patients don't.

And it goes back to something I alluded to earlier. If you ask health professionals more so into secondary care, not primary care. When you are prescribing drugs for a patient, what are you, what's the aim? And most of them, I think there, there has been a survey over 85% of them will say, to treat a condition, and that shouldn't be the case, right?

I want you to treat me, so I'll give you an example. I have a pet hate. This is personal. This is not speaking on behalf of anybody else. I have a personal hate of the amount of steroids we use and that are prescribed to us like I'm small, I wear, you know, size eight, size 10 clothes. I cannot afford to go and buy a new wardrobe.

Gimmo: And what you've just given us, there is a brilliant example of shared decision making or a lack of, so it's something, we talk about a lot. Deborah, I know, you know, is, it's difficult isn't it, in a very complex condition like a kidney transplant, you can sort of think, well, shared decision making doesn't apply here because it's such a big thing that, that we follow the protocol.

But you've highlighted that even in that sort of situation, it's really important we have that conversation with people, so, so they can make that informed choice even if it's actually quite difficult to get your head around some of the thinking. But listening to those patients, like you said, like who would go as far to say as I didn't, I wish I hadn't had the kidney. I mean that's, that's incredible. its massive

STC: Again, thank you for putting that so eloquently, Deborah. So all listeners on this podcast will know that I'm always bashing single organologists. In other words, people who coming at things from a specialist sense of point.

And I've always said we need them, but for me they overreach the person and you've just beautifully put that and you know, I can't, I can't reiterate what you've just said and why I go on about it so much is because it's about values and preferences. Quality of life versus quantity of life. Just because we've got a great study that said it will extend , the life of your kidney by X. Who cares? What does the patient think?

Deborah: Oh, but it's hospital protocol!

STC: Well, that's why partly why I moved out of hospital into primary care and I'm it was quite telling that you said at the beginning of that point that you were talking specifically in your experience about secondary more than primary care.

So take note.

Jamie: So Deborah, look, the, I've got the kidney PREM survey in front of me, of which one of the markers and the, the highlights is shared decision making. The survey was for last year whilst improved in the last 12 months. Scores for experience of shared decision making about your care received an average score of 5.54 out of seven, which is relatively low. Your colleagues' comment from the organization, so you're looking at it as an organization and you take pulse surveys every year

Deborah: Every year. That's right. The PREM is an annual overview of how we feel about our care, and it's, it's a difficult one. We, we construct it, we, we do that with the UK Kidney Association.

It's difficult to construct it because once upon a time it was a tick box, but that didn't give the opportunity for people to write freely to say it's good on the one hand. But these are the things I'd change, but then it's very difficult to quantify. Free responses. So not everybody completes this PREM.

Obviously not everyone completes the PREM. You got over 3 million people in the country with chronic kidney disease at some stage. But I would say if you were talking about drug prescription. That in itself is a very difficult area to discuss because you have to know about drugs before you can have the conversation.

So my ambition is to empower people to be brave enough to have the conversation because nobody, you know, when I speak to other women, I say, well, have you gone back to your consultant? Have you asked why am I on this high dose? Is there any way we can together start to reduce the dose? To, you know, maybe write down to a bare minimum of, say, five milligrams a day rather than 30 or 40 milligrams a day, because that step change will have an impact on your life.

They say, oh, I didn't know I was allowed to do that. So it's more than just the drug question. It's the, it's knowing how to have those conversations and knowing that it's okay to ask anything. And the, the issue with that, so that I can explain fully, is that you do get some people who say, well, okay, if you wanna lose your transplant, go and do, go ahead and do what you want. And, and that's terrifying. That's the worst thing you can possibly say to a person with a, a transplant because our transplants are the most valuable thing in our life. And there's another survey that tells us very, very emphatically that when patients were asked on a scale of one to 10, what are you more afraid of?

STC: I think it goes back to what Graham Prestwich was saying last week about he wants clinicians to support the person as a project manager. So support first and then trust , and I think he put that really quite well, but you have to have the support. And so you didn't say it, but I don't know if you were saying that, you know, when you first lost the first kidney within three years, that you didn't have the same insight, you didn't have the same drive, you didn't have the same understanding and second time round for whatever reason, because everybody's different, you did. And therefore it is easier in all the conditions that we treat as clinicians when people don't have insight. Its incredibly tough to do shared decision making

Deborah: I do agree. And also, I'm going to have a plug for my own magazine now kidney Matters. We're covering shared decision making in the summer issue of Kidney Matters. So read it. There's also an argument how much intervention does a patient need? So I want to be guided on a topic, but I don't want you to make the decision for me. , but we have to have some information to start off with. So that's my argument about, you know, what you've just said. I just didn't know enough back then, even from my clinicians around me. I hadn't, I didn't have a full grip on my condition and the challenging path I would have to follow cause we're talking about diabetes, limb, amputation, the whole blindness, everything. I, I don't think I had a full grasp of how serious a combination of conditions I had when I was first diagnosed with kidney disease in my late twenties.

The other thing is, there's a rebel in everybody, you know? So in those early days, I, no, and I, I'll do it my way, you know? I don't need to follow a diet. Diet's very personal to tell somebody or to try to guide somebody into a different way of eating and drinking, and that's a massive part of their life that's like, Telling someone who they're allowed to fall in love with. It's really personal. So I always, when I talk to patients, I always, when I'm talking about the Kidney kitchen, I always say to them, alright, hands up. If you pretended to be asleep when the dietician walks onto the ward, when you're, when you're in hospital and I put my, I put my hand up. We wouldn't do it if the consultant or surgeon did, but dieticians. We're all fast asleep for some reason. So that's what, what, what's that all about? That's such a, an important part of our wellbeing, but it's food is so personal. Food is so personal and that, and I'm unpicking it and I now understand that and I now work with some great dieticians who say, oh, they've got round that they just follow the Tea trolley onto the ward .

Gimmo: So you said something really powerful and it's just making me think is, you know, with something like a kidney transplant and I suppose there's other equivalence. Do you, you know, one of the problems with the prescriber patient conversation is there's a , balance of power.

That has shifted the wrong way, but I suppose. , you know, you described there a sort of sense of obligation or gratefulness that you should have for the, thing that you've been given. That create creates a dynamic power in that conversation that makes your decision making even more tricky, doesn't it? Because not only are people getting to grips with complex information, they're also getting to grips with that impact of the enormity of what, I use the word being given to them, I don't mean it that way, but I think, you know what I mean? And so, so that must make those conversations even harder

Deborah: . So what I ,absolutely, and you know, Not so very long ago if you were in bed and your consultant and the whole flotilla of white coats came around your bed, that's quite an intimidating experience. We as people who have had kidney transplants and, and pancreas transplants to a certain degree, I've had two pancreas transplants.

We don't want to upset those decision makers. Cuz at some point, and I know this, there might be three or four people that are suitable suitably matched to a donated organ, right? So somebody has to make a decision of who's gonna get that organ. So if you've upset that person, there's a, there's a, a thought in your, the back of your mind, this little voice are saying, don't upset him.

Don't upset him. He won't give you another transplant if you need it. , we're all human beings, so we're all flawed in that way. So I would know that the point system would still bring you if you are the perfect match to the top of that queue. But if there were two or three other people, a younger person a person that hasn't upset your consultant on that same top layer of potentials, then you might be discarded as a trouble.

And you might not get offered that transplant.

STC: Powerful stuff. Deborah, and I think we could go on all night really talking about this. It's been really fascinating actually, and we haven't even got to, but maybe we're gonna come to this now, is that for anybody who's listening, who doesn't realize, often patients who've had waiting for a kidney or after a kidney transplant will be taking a lot a lot of medicines.

So let's move on to the next part of the podcast if we could. And one of the pleasures of being a guest on the Aural Apothecary podcast is that you get to give us three things. So the first one is quite simply a drug that simply evokes a very powerful memory from your life or from your health journey.

So what would you like to give us as your Aural Apothecary desert island drug, as we sometimes

Deborah: Okay, well, I'm going to give you two drugs actually. If you don't mind

STC: Put it in a combination tablet.

Deborah: Yeah. Okay. So, so my dream tablet, what have, I'm calling it DebonFire.

Jamie: So amazing is one of our banned words Deborah

STC: That is the correct use of amazing. So thank you very much.

Deborah: So I, I want to wake up in the morning and take one pill and then feel great.

And I've never, I've never had that in my whole life. Not since I was 11, not since I was first diagnosed with type one diabetes. I've never felt brilliantly. Well, one single day. Oh, so I don't mean it, it's not to, it's not to make you feel sorry for me. I manage it, you know, I have a great life and I walk miles with my dog every single day.

So that's better than an awful lot of people. But when people just can do stuff I think, oh my God, that's amazing. I'm going to climb a mountain today. I just think, oh my God. The preparation I would have to do to just climb a hill, let alone a mountain. So yeah, my, drug would be called Deb on fire, but the drug that obviously has kept me alive is insulin. Of course.

STC: So you were diagnosed as diabetic when you were 11 ?

Deborah: Yes. Type one diabetes. Yeah, that's right. Yeah.

STC: As we said, you can use the word amazing because as you said otherwise you wouldn't be here. So it must have been quite a thing to not have to take it for so long.

Deborah: So my first pancreas transplant lasted nine years and my second 11 years, and it was just incredible.

And I honestly don't think that I would be alive cuz my diabetes just has clearly with kidney disease, has had so many complications. The treatment of diabetes has changed. I've got my freestyle Libra on my arm. I can do my own blood glucose. My phone pings if I've got high or low. So the treatment has changed. It's completely transformed. When I was first diagnosed, we couldn't even get reusable needles. We had to reuse , sorry. Disposable needles. We had to reuse the same needle and sterilize it overnight. So my little 11 year old skinny legs were just, Black and blue. And then my parents were purchasing them from companies in America so that I, and just me, I could have disposable needles. So I can tell you that, you know, over the past 52 years, the treatment of type one diabetes is a completely different beast, and I can live with it now. So I'm not even pressing for a third pancreas transplant. I'm okay. I'll live with it.

STC: A great choice. It is a good choice, which we've previously, somebody has previously picked Insulin

Jamie: Medicine Safety from Northern Ireland I'm going

STC: Yes, Angela Carrington. And also, actually, it was picked by one of our pain expert guests, believe it or not. Tracy Brown picked it as well, but we love DebonFire and I'm always gonna remember that. Now I don't mean it in a demeaning way when I say Arrh because I think when you work in health, I forget when I'm talking to people who don't work in health, that because we meet so many people, you immediately, every day see people that are in such a worse position than you are that you know that.

I think that's why I remain so positive about stuff, because I've seen lots of people today who are really not in a good place and so, you know, a lot of people don't get to hear that, I suppose is what I'm saying, if you don't work in healthcare

Deborah:

But equally when you know, I've got two life-limiting conditions and I won't live, you know, as long as either of, or any of you three. I doubt anyway, unless you do something remarkably silly . But I'm completely pragmatic about it, you know, I. Even if that happened tomorrow, I can honestly say it hand on heart. You know, I've done stuff that my medical conditions have allowed me to do that I wouldn't have done. I'd still be working for IBM in some back office as a, as a middle manager.

You know, this has given me a great life. You know, I've had a great life, so I'm not afraid of that. I do think if, if I have a moment that there is always somebody so much worse off than I am. Oh my God. I don't have to look far for that , and I'm mentally strong and I, I think people that don't have that mental strength must really, really suffer hugely.

STC: Yeah absolutely. Well, I'm looking forward to the next choice then, because you seem really upbeat about your life, which is great because the next thing we want is actually is the anthem to your life or your health journey for the Aural Apothecary Spotify playlist and it really is on Spotify.

Deborah: I'm not sure you're going to appreciate it. It's, let Me Live by Shirley Bassey.

STC: Woah we are all Welsh

Jamie: Cardiff girl!

Deborah: That wasn't , that didn't influence me a hasten to add. It's just every time I hear it, I do put it up top volume and I do strut around the place and I sing it at the top of my voice.

Gimmo: So is it just that the words resonate?

Deborah: It's just that the words resonate. And also she's a gutsy woman and I just really, really like her. Everything about her just, I just love that. Here I am, you, I'm going nowhere. And that's my, that's my attitude.

Jamie: She lives by me. No. That's what we say about everybody Wales.

Deborah: I see. I know actually they used to say that in Cornwall as well. Oh, I've got an aunt here. Do you know her ? It's a big place

Gimmo: I said that to you earlier . So I was talking about my Nan and Granddad who lived on an air base in Cornwall. For some reason, my nan. You know, my mom listens to this, so she'll be able to expand, but she had a hatred of Shirley Bassy. .

Jamie: Hatred is a strong word !

STC: Positive and pacey!! Anyway, right you can definitely have let Me Live by Shirley Bassey and she hasn't yet been in the playlist, so that's great. Okay, and the third thing, what would you like to offer as a book that has influenced your life or your health journey for the Aural Apothecary library?

Deborah: So the book is called Lara, and it's written by Anna Paac.

And it's about the, the story of her great-uncle Boris Paac when he wrote Dr. Zhivago . And the woman that typed this up for him was a woman called Olga. I just have to look at her surname. It's about their love story and it's so incredibly powerful. She went to the Gulag twice rather than give him up to the KGB because Dr Zhivago was not published in Russia until it had been published everywhere else in the world. And it taught me the power of determination. If you are determined to do something, if you are determined to get a book out, if you are determined to go against the might of the KGB, what an incredible woman and he being a typical man, excuse me, even when his own wife died, cuz she was his mistress, he didn't marry her. And so after he died, she had a really bad time with the KGB and was sent away again, and all he needed to do was marry her to protect her, and he didn't do that in his dying years. But I have read that book three, four times and every single time I, I find something else in it that just reminds me of the power of the human spirit.

STC: Powerful. I think you can put yourself in the determined, powerful ladies as well. It's really, yeah, that's really coming through. So Lara by Anne Paac? Okay. Well I know we've got some listeners who are like their books, so that will definitely be making their way into their Amazon reads.

Gimmo: We've got a sub-genre in our library, haven't we? Of books sort of about the experiences of women. The first one was The Invisible Woman, which was about services aren't designed around women, and the second one was Lessons in Chemistry, which was at Christmas. And the reason I mentioned that was I, again, I mentioned my mom on the back of Claire's recommendation, I got it from my mom and she said, it's fantastic.

So that's about the struggles that a woman scientist had getting herself taken seriously in, in chemistry. So I think that book will be in good company. I know a lot of listeners will enjoy that

STC: Okay. Thank you very much Deborah.

Jamie: Our micro discussion next looking at the recent article in the Sunday Times, the NHS is Flatlining, here is How to Save It right now by Sean Linton.

And so we didn't call them out last week, so I will this week. Sean came up with 10 suggestions, fixes for the NHS to stop it flatlining. Home safety checks, Let pharmacies do more, Curb the multiple drugs, Pre-surgery. Health checks, Better follow up care, Communicate better, Unblock the beds, Embrace genetic testing, Suspend inspections, Look after staff.

So there's the list. Did you get a chance to have a look at it? Deborah, what were your thoughts?

Deborah: I do agree that pharmacies could do much more. And I also agree on a cost level to the NHS, because I think if there's a cheaper, generic drug than the one you've been prescribed, then for the pharmacy to say , look, even if you get free prescriptions, this is only gonna cost you 60 pence and it's gonna cost the NHS whatever.

If you could reverse that really costly drugs being prescribed when there are cheaper, equally effective alternatives, that’s great. Curb multiple drugs. I put definitely yes, because I speak to a lot of people who've just been on drugs just forever. Nobody's bothered to look at what they're taking.

Yes, they're checked for contraindications, but they're just. , you know, some drugs even I know, and I have no formal training, shouldn't be taken for over an extended period of years. So yes, curb drug prescribing

Jamie: Sorry Deborah, just on the drugs bit or the medicines component of that, then some of our lay and public listeners will be surprised to hear that lots of transplant patients don't persist with their medicines and, and we often talk about it coming back to that shared decision making. You know, if that doesn't happen at the start then that's not great Can you just expand a little bit more on that for us

Deborah: I think ,especially when you are first discharged after you've had a transplant the quantity of drugs that we take is, is unbelievable. Like 40 a day, 50 a day, even more sometimes.

And I do say to people, over time it will reduce, and these are, you know, just to, to curb infection and, and things immediately after your surgery. But I have met patients who just say, I just can't keep taking all of these tablets. I'm choking on them physically and also, It's ruling my day, and it's such a..., for me it's not a big deal, like if I had to take 20 medicines, as long as I knew what they were about and I was happy to take them, and I'd looked into all the side effects, then I would take them. If you could tell, if you could justify them, I'd take them. But a lot of people, just the sheer volume of tablets, it's a really difficult thing, you know? And you end up choking on them and you have that awful, awful aftertaste. So I think if there was a way for, for people to change their mindset and to think what's the minimum amount of drugs this patient could have to be comfortable with, I think that would be a, a good step if that make, if that makes sense.

Gimmo: You have just defined Deprescribing, haven't you? , which is another one we talk about

Jamie: Okay. Sorry, I interrupted your flow then on our article, back to it.

Deborah: I got pre-surgery health checks yes, but you know, you need huge resources in going into that. You know who? A list of high-risk patients, I think, yeah. I mean that would be wonderful. But that leads me to better follow up care possibly. But I've had brilliant follow up care. I mean, really, and even my consultants, even now, 23 years after my last remaining transplant is still going, still says to me, when do you want to see me again? And I can still say In eight weeks.

And I do go in every eight weeks. So my follow up care has been flawless. I could not fault it.

Unblock the beds, . That's a bit of a no-brainer, isn't it? So yes, we closed all the cottage hospitals around here. So I was on the ward recently. I had cellulitis. I was put on a ward with three absolutely lovely elderly ladies. And they were there not because they were very, very ill, but because there was nowhere for them to go. And so all the nurses, you know, and had to look after them and they wanted to be home. They wanted to be back at their care homes, but they just, there was no care for them. So yeah, absolutely. No-brainer.

The next one, embrace genetic testing. I'm a massive no on that. Okay. Because I think insurance companies would get hold of that and we would have our insurance policies bumped up based on a genetic testing strip that they had received from the results of my genetic testing. And at least I could go on holiday for a reasonable price up until about 10 years ago. I'm going my way on holiday next week for a week. It's costing me 640 pounds my insurance for one week. So just to put that into context for you, my sister's going , 30 pound insurance premium

Jamie: Anywhere nice ?

STC: Devon ?

Deborah: No, my niece is getting married in Dubai and, and it was canceled over Covid. So this is a big family get together

Gimmo: We might have to get you back on Deborah cuz that is a massive, what you've just said there is massive, isn't it, in terms of some of the things we've talked about.

STC: I was gonna say there's a whole episode about genetic testing cuz there are lots of, there is Ying and Yang. I think we'll just leave it at there. Leave it at that

Deborah: Okay. You want my personal

STC: We respect your opinion

Jamie: Absolutely. We do. We've cut it out, Deborah, so don't worry

STC: No, to be honest, it's another classic example, if I may say, of Deborah's really most powerful point so far, which is about the disease versus the person. And so she's just explained that, you know, that means that she's gotta pay X amount of money as a person for her healthcare insurance, possibly as a consequence.

Deborah: Okay, so look after staff. Well, absolutely. I feel so sorry for particularly nursing staff. And, and paramedics. I've had two experiences over the past year where I've had to be taken into hospital. I've had some fairly, fairly serious needs. My gall bladder burst, nothing to do with diabetes or kidney disease. I just, I'm lucky like that.

Gimmo: I was gonna say, is your nickname Lucky!

Deborah: I ended up doing, trying to do so much, not just for myself but for other people on the ward because they just simply couldn't manage and I feel so sorry for them and I think that's a real tragedy cuz nurses, it's not just a job for nurses, it's absolutely a vocation.

And ambulance drivers brilliant. But I have sat outside a hospital. Year ago, Christmas time for 16 hours with two ambulance drivers who should be off getting other people into hospital. But we, nothing was moving. There were ambulances everywhere. Nothing was moving. So those two personal experiences of mine have really shaped my opinion on that.

STC: So what we're interested in as well is what would you like to add to that list? So this is what we are grandly calling the Aural Apothecary NHS 2023 tonic. And just to remind listeners, the two things that have already been given to us by Graham, were support then trust patients as project managers for their own health, and secondly, analyze health data more to work out what works and what doesn't.

So what would you like to offer the tonic as an ingredient?

Deborah: Its a slant on one of Graham's actually. And that is, you're going, you know, I'm gonna say this is, is, is treat the person, not the condition. So I just think a deeper conversation about what people want from their life and what their expectations are.

And can a good quality of life be attained and maintained? Using some pretty powerful drugs and I, I question the length to which we go to force a body to stay alive when sometimes it just doesn't want to.

Gimmo: I think that's really powerful and, and actually, I go back to episode one when me and you, Steve, were talking about the books that we read and yours was "Being mortal".

STC: Yes Atul Gwande that's exactly what I was just thinking.

Gimmo: And that's what that book is about, is about have we in healthcare lost our focus or not? That's not the word. You know, we, we focus too much on keeping people alive at all costs as opposed to that quality-of-life issue. And it's a lose in a way because it makes life harder for everyone in the NHS and, you know, worse for the person involved as well. So if you haven't read that, I'd recommend that as well its a fantastic book

Deborah: oh yeah. Well I'm gonna be able to listen to this cuz there's a couple of books you've mentioned that I definitely do want to read, but I haven't remembered them.

STC: Yes it's an absolute must read for all health professionals.

Jamie: Big thank you to Deborah for joining us on the Aural Apothecary , for sharing her stories, her Desert Island drug, her career anthem, and her book for the Aural Apothecary Library. I think it's safe to say IBM's loss has been Kidney Care UK's gain Deborah. Steve will come in with our motto. Now, before I say that, what do we say about this podcast, Steve? It's not just thrown together! Coming up next time we'll be joined by Professor Alf Collins. Alf is clinical director of personalized care, NHS England . He has researched and published widely on self-management support chair decision-making, personalized care planning, co-production, patient empowerment, and clinician activation.

We look forward to welcoming Alf next time. You can contact us via Twitter, @auralapothecary we're on LinkedIn. We have a regular column in kidney UK now as well. You can email us at auralapothecarypod@gmail.com over to Gimmo for the Final Ingredient.

Gimmo: Okay, so thanks Deb. That was, that was fantastic. And, and some really powerful stuff there. So have any of you got a loyalty card? Supermarket loyalty? Well, if you have, you're not alone. 85% of UK households own at least one 30% have five or more. What has that got to do with health and medicines? Well, we've known for a while about how we're using the data that's collected about us to manage health.

So Google Trend data's been used for years now, hasn't it, to predict flu pandemics and, and this sort of stuff. But maybe our loyalty card can be used to predict if we have serious disease or more specifically cancer. So the BBC Health website today reports on a trial in the Journal of Medical internet Research which I didn't know existed, which shows that tracking what shoppers buy via loyalty cards may be able to help spot early signs of cancer.

So more specifically for this study, frequent purchases of OTC painkillers and indigestion tablets together reveal the higher risk of ovarian cancer in women. So if true this could be particularly important because there's no reliable screening tests for ovarian cancer. So no real way of picking it up early.

So course are limitations to this study, but the authors conclude that with further research we could be looking at the future development of an alert system based on our loyalty cards. So there we have it. Tesco club card become a, could become a tool in the fight against cancer and "Every little helps".