Episode 5.4 - Rachel Power - Communication, Communication, Communication.

Aural Apothecary Episode 5.4

Jamie: Welcome to the Aural Apothecary Podcast. My name is Jamie Hayes. For this episode, we're joined by Rachel Power. Rachel is Chief Executive at the Patient's Association, an independent charity, campaigning for Improvements in Health and Social care for patients. We will welcome Rachel 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 article in the Sunday Times, (not so recent, now) "the NHS is Flatlining, here is how to Save It right now" by Health Editor Sean Lintern. Before any of that, let me welcome my two fellow Apothecaries. STC is in Bournemouth and Gimmo is in Cardiff. Welcome both.

Gimmo: Good evening.

STC: Evening.

Jamie: Back from Lisbon.

[00:01:05] Gimmo: Yeah, just back from Lisbon a week ago. Well, less than a week ago, so that was fantastic, that was our first international gig. I'm sure there's a few comments on it. I was interested in two things. In Europe, the word drug isn't really associated with the word medicine was what we were told. And so when we used the word drug, they were associating it- I know, I know we do as well, but it was much more pronounced over there. So, our desert island drug caused a bit of confusion and the Oral or Aural Apothecary , with an A, was also a cause of some amusement ,that didn't seem to be well understood by people as well.

But it was fantastic, I thought.

STC: Yeah, it was good fun. And Gimmo, you are the only one that arrived well and left well.

Gimmo: Yep. Constitution of an ox.

[00:01:46] STC: Well done. Yeah. So I've been struggling with a virus for about eight weeks. It's coming and going and eventually I got a chest infection. So, I wasn't feeling great when I was there. I'm just about recovering now, and Jamie was fine when he arrived, but one night we went out to a nice fish restaurant with Jonathan Underhill as well, the four of us, plus Jamie's wife, who was also doing a session there. And two fools decided to go for the Russian roulette, and go for the oysters. And guess what they both got done, Jonathan and Jamie. How was it Jamie?

Jamie: Coming home was rough.

 STC: Well I'm glad I didn't give Gimmo any of my virus or chest infection anyway, seeing as we were roomies. So, yeah. We did some good stuff, didn't we? We went to the bookshop that was a pub that was fun.

Gimmo: And the pharmacy museum, even though we're not a pharmacy podcast.

[00:02:37] STC: That's right. And we launched the website there. If you haven't already caught up with that its www.theauralapothecary.com. Everything is on there. All the previous episodes with a load of extra stuff, some transcripts. We're hoping to do most of the transcripts. And you can search stuff. So, I've spent a lot of time, key wording, everything so you can search all the episodes where we talked about shared decision making or palliative care or whatever your bent might be.

So yeah, hopefully you'll enjoy that.

[00:03:06] Jamie: You can tell we've got a chief executive on cuz she's getting on with work as we're chatting. So we'll come back to that in a moment. So back from Lisbon. Look, I was pleased, Dr Jo and Lelly's workshop went down well, "Burden to Benefit: deprescribing at the end of life".

I had some skin in that game as I was the one that recommended it for a workshop in the first place without Jo's knowledge really. So that was an interesting few months in the run up to that. We had a standing ovation from our crowd. I don't know if you noticed that they were standing. I know. And they gave us an ovation.

So, I count that as a standing ovation from the hundred or so gatherers that we had. Yes, during the show we had live contributions from where? Germany, Australia, and Greece. Yes. And we had guests from Croatia and Serbia, so, truly international. And then,

[00:03:50] STC: Hang on, should we just shout out Nenad and Daria who were brave enough to come on as guests and gave us their three things for the Aural Apothecary?

Jamie: We certainly should. And as a result of that, we've bounced around the European medical charts for the last few. Number two in the charts in Denmark, number four in Ireland, nine in Portugal, ten in Spain. So, it's been great to meet our European listeners, and thank you for your support.

STC: Can I just give some public service broadcasting information? So, I was talking to one of my fellow editors of the European Journal of Hospital Pharmacy, Hugo, who's from the Netherlands, and he said he was enjoying the podcast, but he found that we spoke too quickly, especially me. And I did say to him, you do know that on Spotify and Apple you can choose not only to speed up podcast, but you can also slow it down to 0.8 or 0.5 speed.

 So, I think I made his evening and hopefully, Hugo, you'll be listening to this on 0.8 on Spotify, and I don't sound too slow…..

[00:04:55] Jamie: Very good, look before we move on to welcome tonight's guest, need to apologise to our listeners who are waiting for our episode with our chronic pain patient, especially after we teed you up so nicely with the rerun of Tracy Brown's episode.

Look, we often talk about what happens when the chaos of people's lives collides with healthcare. Well, it looks like it can collide with our podcast too, and so we haven't been able to catch up with Sean, and so it looks like that episode might not happen. We'll see. But it's the chaos of his life in collision with the chaos of our schedules hasn't quite happened.

So apologies if you're waiting for that one, but let's welcome our next guest, our great pleasure to welcome Rachel Power to the Aural Apothecary. Rachel joined the Patient Association as chief executive in June, 2017, bringing with her over 20 years’ experience of health and social care in the not-for-profit sector.

Rachel's focus is on building true partnerships with patients through health and care services. Part of the patient's association's five-year true patient partnership strategy. The strategy answers the challenge of rebuilding health and care, following the pandemic, and overcoming many long-running problems for patients about not being listened to and services that meet their needs.

[00:06:00] Welcome to the Aural Apothecary, Rachel.

Rachel: Hi. Thank you so much for inviting me.

Jamie: What's on your agenda from a medicines perspective then, Rachel? what can you bring our listener?

[00:06:10] Rachel: From a medicines perspective I suppose the most important thing for me at the moment is around medicines information and, some patient described to me with some of the medicines they're on, that they could wallpaper their whole room in the medicines information they get in the box.

And yet they don't know what that medicine really means to them.

STC: It's about as useful as wallpaper.

[00:06:31] Rachel: Well, you know, maybe it's quite funky as wallpaper, but it's about clear, accessible information and information that should be more tailored towards the patient so that they know why they're taking the medicine and what the medicine might be and how to take it.

And I think the amount of people who admit to never really reading it, because by the time you open it and it's written in that tiny little writing.

STC: Font seven?

Rachel: Font minus seven. Yeah, so I suppose from medicine's point of view, that's kind of one of the key things that we're talking to a lot of people about at the moment.

[00:07:04] And there's just been a new report issued from one of the, AHSNs on patient's attitudes towards medicines and medicines information. But, I suppose what's really on our mind is all about that shared decision making. Because, to get patient partnership in design and delivery of services, we've got to get shared decision-making right.

That includes medicines and how you take them. So, the information the patients get should be much more tailored towards, towards the individual.

[00:07:31] Jamie: So we're talking about the patient information leaflet in that opening salvo. Yes.

Rachel: Yeah.

Jamie: We can remember when there weren't any patient information leaflets all going out with medicine.

Can you remember those days?

STC: I do. And no expiry dates on the boxes?

[00:07:44] Rachel: Well, and also, if you look at things that happened during the Baroness Cumberlege review into Sodium Valproate and things, and the horrific impact that had on people. You know, up until recently, people were still getting clear boxes without the information and without the labels, which, I think that's just changed now recently, hasn't it? With the new patient safety commissioner, getting really involved and saying, so we knew how bad those medicines could be for certain cohorts of patients, and yet we were still putting them out in boxes without information.

Gimmo: That shows you how, I mean, useless is a strong word, but the leaflets have had that information on Sodium Valproate for years and yet the issues still happen. So, they clearly either weren't being read or were being ignored. I know we're zeroing in on the information leaflets, shared decision making's, obviously much bigger than that, but is there something that your organisation would like to see with regard to this in terms of how it could be done better?

Because I think it's been on the minds of people for a long time.

[00:08:44] Rachel: We've only really started focusing a little bit more on it through the work that we've been doing with one of the, AHSNs, but we all talk about health inequalities in healthcare. Some people it feels like it's something new, but it's been going on for a long, long time.

And we've got a health literacy age of between 9 and 12, and yet we're handing out these info, these medicines to people with language. You know I remember going for my Covid 19 vaccine and coming out and because there wasn't much evidence at the time, the patient information leaflets were quite simple and I just thought, actually, I'm reading this, but I open all these medicines, if I do take medicines, not very often.

Do people really read them or does there need to be that conversation and time for the healthcare professional to kind of talk through the medicines? Especially think of, I think one of your podcasts a while ago that I quickly looked at was around elderly people as well and the amount of medicines that people take and how do they interact with each other.

And so, if we talk about patient partnership and design and delivery of services, it's about patients having the best possible outcome. So, if a medicine's gonna affect something else in their lives. And it always needs to start with what matters to you. And so, if you've got a medicine that's gonna make you really, really tired and you're at a stage in your life that you want to just live your life to the full, is that medicine important?

So there just needs to be those conversations more.

[00:10:10] Gimmo: And I think any healthcare professional listening will know, particularly Pharmacists, that whenever one of their relatives gets a medicine, they'll get a call saying, I've just been reading the information leaflet and it says, my foot's gonna drop off or something like that.

And it's very difficult to deal with those conversations cause you don't know the context of, often why that medicine was given and any interactions. I dunno, Steve, you're the practicing clinician here, that conversation about interactions must be quite interesting as well.

[00:10:33] STC: Yeah. So, I was interested, I suppose, Rachel, in what are your patient groups telling you in relation to, as Paul said, like how can we do this better? Because legally what they'll say is that the company has to give something, but there are better ones out there. So, I was just thinking about, there's a website called Choice and Medication, right. And it covers a lot of mental health drugs and they're all done in easy format, easy to read, people with learning difficulties. And I don't know if you're aware of that, but there is such a website. However, I will tell you for a fact, it's behind a paywall. So, unless somebody in your health board or integrated care system or whatever has paid for it, it isn't actually easily accessible. However, the stuff that's on there is excellent. And you said about health inequalities, which of course we also talk a lot on the podcast about, as well as shared decision making. And are your members telling you that, you know, the fact that they're only available in English, or is it, like you said about how small the print is, what are the issues?

Because there are other ones available in other languages. I suppose it's Paul's point, how do you, how can we help to, to do this better, I suppose.

[00:11:47] Rachel: It's not something that we've really talked to members about at this stage, but the report that was issued a few weeks ago by the AHSN did speak to members, and it's really hard to kind of go, yeah, it should be in different languages, it should be written in accessible language. But we had a lived experience advisory panel we brought together to help me, guide me in implementing the strategy. And what we learned with them was, I didn't think I spoke jargon at all. And yet through the meetings we ended up putting together a jargon-busting dictionary because, you know, I remember going into them one day and talking to them about the NHS constitution and I realised that actually the word constitution is. It’s a silly word, so it's the agreement between patient of what the NHS is saying patients are entitled to have.

[00:12:35] I think that's really difficult. I think it has to be quite tailored because if you look at the amount of languages there are in the world and some of those languages aren't written, if you look at Newham in East London, that's got, you know, 120 different languages of which a percentage them are not written languages. They're spoken languages, and then you've got dialects. They're different in different parts of the country. And so all of that. So, it's something about that shared decision making and looking at having that more tailored. And I don't know how you would do it, cuz I get that it's legal document, but actually I'm Rachel, I'm about to take this drug.

These are the things these are my other issues. What do I need to know about this drug? What do I need to be nervous about?

STC: And I suppose it goes back to the point I think the Gimmo was asking me about as a clinician. So, the information, in whatever format it is should supplement the conversation that you, the clinician has with the person.

So, as we all know, and Graham Prestwich was on in the first episode of this series talking about, we need to, we need to trust patients to be their own project manager, but first of all, we have to support them. So, if we don't give them the information at the beginning, then of course it's gonna be hard for them, isn't it?

So, the paperwork should be supplementing what I'm telling you. So, if you are just starting on a statin, for example, because you've got high cholesterol and you've got a family history of heart attacks and strokes. I should be saying to you, if I'm the clinician, by the way less than 10% of people might get some form of muscle pain, and if it's serious, then you need to tell us about it. Or if you go yellow that means that your liver doesn't like it. Those kind of bits of information, and like all medicines, it might upset your bowels for a bit and maybe it might affect your sleep, but we can deal with those things, and we can switch within the class of medicines.

But that's the starting point, isn't it? And then you need to decide whether you want to take it. I mean, I've made an assumption at this point that we've had the discussion that you want to take the statin, but then the paperwork supplements because you are not necessarily gonna remember everything that I've said, are you?

Rachel: No. And that's what I was gonna come back and say. There's something about being able to find that information later as well, but that information and through maybe digital means, I don't know, but you can sit and have that shared decision making conversation and you can do the “ what matters to you”.

And Alf, when he was talking to you, he was talking about, you know, the BRAN model of Benefits, Risks, Alternatives, and the do Nothing. Yeah. Somewhere later that evening or the next morning when you're taking that drug, you'd be going, oh, what did they say about this drug? Because they are gonna forget it.

So there needs to be something much more tailored and it could be something digital or something that the NHS app, as we as people want to go towards, people are using the NHS app much more or something in your medical records. We have huge amount of people contacting us around how to access their medical records.

That something in that medical record records that conversation. So, they'd go back and go, oh yeah, they said I should have a glass of orange juice and I'm having this. It helps absorb it better. Or whatever.

Gimmo: That's a good idea. Do we ever record those conversations, and give it to the patient to take away from?

STC: Yeah. So, if I've recorded what I've just said as an example, and Rachel's got access to her own health record through the NHS app, she can see what I've just written. So, it'll be there.

Gimmo: Yeh, but actually record the conversation.

STC: Oh, not as in record it , like we are recording our conversation, but it would record my notes and I didn't know if Rachel meant an actual recording of the conversation or did you mean my record of our discussion?

Rachel: A record of our discussion, yeah.

STC: So that should be freely available, in England anyway, from this month, I believe. All practices should be offering that, and all patients should be able to have access to it. So that will allow them to go back, and I suppose the other thing, we mustn't forget that obviously community pharmacists and there's a new medicine service so that if you start on a new medicine and you have questions after you've had the consultation, you go and, when you get that medicine or you get home and then you start taking it and then you worry about it. You could speak to your community pharmacist as well, can't you?

Rachel: Yeah. And I think it's about the relationship with the pharmacist as well. And being able to pop back in. And I think its people understanding like I use my pharmacy. When my kids were small, I would go into my pharmacist quicker than I'd go to my GP.

To go, "oh, what do you think this is" or "do I need to go and see the GP?". And I don't know why I did that, but, I think we need to understand the percentage of people who really access that medicines information and understand it. And I've just found a copy of the report. It's Kent, Surrey and Sussex AHSN that've done it. In the report, they say only 32% of patients of age say they fully understand their medicines patient information leaflet. That's a small percentage of people.

Jamie: It's worth pointing out that those patient information leaflets you mentioned, they're legal documents, so they do get user tested quite a lot now as well.

They never used to, but if you look at the process that they go through trying to decide how this information comes across. And then I've seen it as the NHS, you know, I've been sitting around meetings where we decide the answer is let's produce our own patient information leaflet and, you know, we're gonna laminate it eventually.

And, again, we get it so wrong because we didn't used to test things. And I remember with, I think it was when the new Warfarin booklet came out. Remember that, and the term avoid alcohol, how patients in our public interpret the term "avoid alcohol", it is just incredible. Some people think that means don't drink spirits. But beers are okay, right the way through to don't go down the alcohol 'aisle" in Tesco! Real interpretations of what that phrase "avoid alcohol" actually means. And so yeah it's a fascinating area

Rachel: I get you say, Jamie, that they're user-tested. But I would often ask more about who's doing the user-testing. So, part of the Patient Association is we run lots of focus groups with different patients and we very much try to get to the real diverse voices. And quite often in conversations with other people, when I talk about how they're pulling together the focus groups, that they're using, patients who have the knowledge, and if you're going to use a test, you've got to use a test with people who actually right now don't have power. So, our theory of change talks about looking at shared decision making and it looks at how do you give patients confidence, what needs to be in place for the patients to have the confidence, but also how do you give a healthcare professional the confidence to hand over that power to the patient.

And I think you've spoken your last podcast where you were talking about, so when you go into your GP or you go into your hospital or you go into your doctor, you're going to their place. So immediately you feel like the visitor rather than the equal.

STC: Oh, you're talking about my zoo analogy?

Rachel: Yeah, see, I have listened to some. I did.

STC: Did you like my zoo analogy? Did it make sense?

Rachel: Yeah. Cuz I think that's a thing. And if 32% of people in a very big study said they don't understand the patient information leaflets, the user testing's not completely right.

Gimmo: Yeah. And those user tests can never recreate, I think I might have mentioned it last time or have mentioned it before, but when my dad was told he had heart failure and then the doctor went and told him, you know, what he was gonna do and what the instructions were. And it could well have been a great conversation, but my dad just wasn't listening. Cause all he was thinking was, I've got heart failure. What the hell does that mean? So, it could have been the best conversation in the world, but it took a long time for him to sort of get that concept of heart failure out of his head before he could even begin to think about how do I take a medicine to solve it?

STC: One of the other things, just to say, and this came particularly after Covid, is a lot of GP practices now have the ability to send text messages if people have a smartphone, obviously, and not everybody does, and we use this a lot. We have a system called a AccuRx, and it allows you to send information like, okay, we just talked about this and that information I just talked about, about the statin, and then I send you the NHS link to information about statins. So I think that helps as well. But I suppose just to bring this to a close, what I was gonna say, Rachel, was really, I think your best, for you and the Patient's Association, if you're not already, you wanna be talking to the MHRA. Yeah. Because they're the people who make the decisions about legally what pharmaceutical companies have to do.

And as I understand, you may have some pharmaceutical companies who are involved in the Patient Association, but they're the people that need to almost, that you need to lobby. And it's the MHRA, who are the people that make the decisions. And my last question really was, do you have any pharmacists or pharmacy technicians that work for the Patient Association that could help, given that this is such a big issue.

Rachel: Well, no, we don't, and it's not something that we are leading on as a Patient Association. We've worked with the Academic Health Network on it, but what we, what they're calling for, which is interesting, and it comes back to your point, Jamie, which is they're talking about reviewing the legislation and regulation to identify potential adaption in support of patient and carbon friendly digital first approaches.

It's not going to be the answer for everybody so that it is more focused. It's just an interesting thing and I was listening to a lot of people talking about it, so, but it's not something that we are actively campaigning on. So right now we're very much focused on what's happening to patients in the middle of this ongoing crisis in the NHS and across the board.

We're non-disease, non-condition specific, so we look at issues that affect all patients.

Gimmo: Well, we saw something in the news this week, didn't we? On that. You shared it, didn't you, Steve? On the WhatsApp group, that patient satisfaction was at an all-time low?

STC: I'll give you the stats, for the record, seeing as we're talking about it.

We might talk about this later. So, in the 2022 results, whether people were quite or very satisfied with the NHS, it's reached an all-time low. It's 29%. And to give you some idea, in 2010, it was 70%, and this survey's been done every year since 1983. So it pretty much tells you of what we've been talking about before about the NHS. Gimmo, what was the word you used?

Gimmo: Catastrophe.

STC: Catastrophe. Storm. Yeah. Storm. And so I'm sure you are hearing that as well, Rachel.

Rachel: Yeah and those satisfaction figures didn't surprise us. I actually did the Radio 4 Today program on Wednesday morning about them. But the one thing that we do need to remember in the middle of all of that is that despite that satisfaction figure, it was really remarkable how the public felt about the founding principles of the NHS and that they held up the majority people in that poll agreed that the health service should be free at point of use, available to all.

And we did a survey with patients that we just reported on a few weeks ago and actually, what patients told us was when they get their healthcare professional, they're dealt with compassion and respect, and it's a good experience. And I know when you were talking to Alf, he was talking about shared decision making and actually there was a higher percentage of people who felt that shared decision making was happening.

So, it's everything else around the system. It's just not working for patients right now. But how can it be? Because this isn't just Covid, this is a decade of underfunding in the system as well, which I'm sure you're all very aware of. And we are sitting here when the end of March, 2023 and we still don't have a workforce plan, and we don't have a plan that looks at retention of staff in the main because recruitment's important.

We've gotta, you've gotta keep the staff that you have. So our survey was really happy with the relationship with the healthcare professional, but what people did find the worrying things in our survey was the impact on people of not being able to access the services they need. And we talked to a lot of patients who had, who relied entirely- whose healthcare condition affected their lives mainly and entirely. And there were figures, 2000 people, 84% said it affected their mental health. There was high percentages who said it affected their relationships with their friends and family. There was high percentages that said it had a financial impact because they couldn't do, they couldn't go to work.

So, that's why we look at patient partnership. Because, we think in an under-resourced system, it will make for better services as well. I think we've gotta not lose sight of the fact that people are still really supportive of the NHS as it is. Just the satisfaction with what's happening at the moment has dropped to an all time low.

Jamie: Thanks. Very quickly on that point, on your website, you've got a lovely page, which is a day in the life of your helpline. So when I was looking through it and I read it. And I thought, oh, I wonder how many times medicines feature in the phone calls, and in the particular version that's on the website at the moment, they feature once or twice.

But what I wanted to ask you, and depending on your answer, it would be a suggestion, is I really enjoyed reading that because it shows the richness of what people are contacting the Patient's Association about. But what I wanted to know is when was that last updated?

Rachel: That's actually new enough, and that's something we've started doing recently, so I'm really glad that you like it.

Jamie: So, yeah, and so I would suggest don't let that become a static page that doesn't get updated for months on end. I think that was a really great piece of, you know, and I love the way that your staff say, look, the help line opens at 9 or 9.30 , but we open at 8.50 with a cup of tea and a biscuit to get ready for the day. And then we have a debrief at the end of the day. And in between, they get everything asked, don't they? Yeah. So I think that's it's a lovely, a lovely page, but I would urge you to keep an update with what people, what's on people's minds.

Rachel: Yeah. No, I think that's really important and thanks Jamie.And I'll feedback to the helpline cuz they are wonderful, and they are there every day and they do get some very, very difficult calls and we are getting an increase in calls that we're very worried about people, and that's indicative of what's happening in people's access to health and care.

STC: Rachel, can I also make one suggestion for perhaps the website that might help your organization and the people that access it? Is that, when you talk about medication review on the website, it's very much focused at the medication review that you might have in a community pharmacy. Whereas what we talk about a lot, and I'm sure you've heard this term, is structured medication review, which happens generally in your general practice, so it might be with a pharmacist or it might be with a doctor, or it might be with a nurse practitioner. But I think perhaps, and I'm happy to help with this, but your, some of your terminology to help patients so they understand the difference between a structured medication review, which is the bit that “Me and my medicine”s and Graham Prestwich is talking about, in other words, prepping ready for the discussion so that we can have a shared decision making process. And I think that might help your population.

Rachel: Yeah, that'd be fabulous. And my next question was, will you help us with this? So I'm so glad that you said yes, first of all.

STC: It's not just thrown together.

Rachel: People do get to know that I just, you know, where I can get help, I'll ask for it.

STC: Sure. I'm an NHS servant, have been all my life and it breaks my heart, you know, going back to what you said about how people feel about the NHS, so it is nice though that, that people do recognize that when they finally get there, we are still compassionate and we really trying our best, but it's really hard, I can assure you.

Rachel: But, I think, in a way, in some of the media that you've seen over the last couple of years, it talks a lot about the impact on staff and there is an impact on staff and it's a tough job. It's an awful, tough job in the way that staff are having to work right now.

But when I do media and we see percentages, people who haven't got their operation, and we see that 7 million on the waiting list. These are individual people whose lives have been impacted hugely by not being able to get the services that they need. And I think we need to understand more that if you're sitting at home and waiting for your hip or your knee operation or some treatment or cancer treatment, then the impact that it's having on you as an individual, and you are a real person in the middle of this. And I think it's too easy to talk stats all the time. So what we try to do, when I join and we wanna work in partnership with the NHS, and so when I join groups within the NHS and I'm working on, you know, the elective recovery or the outpatient strategy or whatever we're working on, what people value is that we come in and go, okay, let's look at the real stories of what's happening to people out there.

Because stats don't tell the real story about an individual.

Jamie: What's the quote? Statistics of patients with the tears wiped away. Bradford Hill. I'm gonna, Yeah.

Rachel: And that's the other thing that in, you look at shared decision making and you look at patient partnership is patients want to give feedback.

They don't want to be seen as somebody who's just like giving out about something. They want to work together so that we can make sure the service works in future for people. And so if something's gone wrong, actually have a conversation, have a genuine conversation, and one patient, what was that? They actually said in one of our focus groups, it was really, really simple and they were just like, actually, I just want them to know that I want to help.

And you talked about the project managers, but, patients are experts in their own lives and their own health. They know what they need and people like Alf and shared decision making just has to happen more, and it is happening more. It is happening as Alf says that as well, but it's not universal by any means.

STC: Okay. Well it's been a fascinating chat. I'm sure we could speak a lot longer on this, but it's been great. So you can loosen off a little bit now, Rachel, and you can be yourself in relation to the things.

Rachel: Oh, I was being myself, don't worry.

STC: Okay, excellent. So we asked for three things from all the guests on the Aural Apothecary, and the first one starts with a 'desert island drug' or a memory evoking drug, which is something about a medicine or a drug that evokes a powerful memory for you throughout your life. So what would you like to offer the Aural Apothecary formulary?

Rachel: I don't have any drugs. This is my problem. I don't, I don't, it's really hard. I've been thinking all day, you stressed me out all day by this conversation. I was like, I can do the book, I can do the music, I cannot do the drug. And then I listened to Alf and Alf had 3 of them. But then he's a healthcare professional.

STC: He's a healthcare professional. Yeah.

Jamie: But you are a, you're a patient, you're a member of the public.

STC: You must have taken drugs.

Rachel: But like, paracetamol isn't a life-changing drug. It's helpful when you've got a bad headache.

STC: Well, it doesn't have to be life-changing. It's about, well, it could be for you. It's about something that has a memory for you.

So Paracetamol is the only medicine that you've ever taken?

Rachel: I've had an anti-biotic, but I've been really lucky. I've been actually really blessed that I haven't had...

Jamie: It doesn't have to be you actually, Rachel, because do you remember in our pilot episode it was a family member? That was, well that is a great story that has never been aired. But anyway. So it doesn't have to be for you, Rachel. It could be some, it could be one of your loved ones or your social circle.

STC: Oh, your dog. Yeah.

Rachel: My dog!

STC: A veterinary medicine

Rachel: No, no. The anti-snoring drug for my dog. It doesn't work obviously. Cause you could just hear my dog snoring.But, so that's definitely a medicine that doesn't work. Yeah I'm serious guys.

Gimmo: Do you know what, we have this podcast about reducing and deprescribing and the importance of medicines? Maybe this is a good thing. Jamie, you're tutting.

Jamie: No, no, I'm not tutting. I'm not.

Rachel: No, I'm trying to think like, I genuinely, I looked at my medical records a few weeks ago just because we were doing a, we were doing a webinar on accessing your medical records, and I thought, I must have a look at my medical records.

And I kinda went through them and I thought, actually, there's about 5 different medicines in there. And I think most of them were probably around heartburn when I had, when I was pregnant with both my kids and, oh, Gaviscon, that's it. That's the one that saved my life. There we go. I can't tell the pharmacist that because I didn't ever put it into a spoon. I just drank it by the bottle.

STC: Oh now we're talking! Now we're talking and this is my favourite when we're talking about Gaviscon. Do you know the advert with the fireman? Yes that's exactly how it works. Creates all that foam in your stomach, stops all the acid coming up.

Rachel: Oh, yeah. But there was no medicine's information there because I just took it by the bottle. Just wake up in the middle of the night and down it.

Gimmo: And you'll never forget the taste.

Rachel: Oh God. It's disgusting.

STC: Yeah. Oh, but you can get peppermint now. It's not.

Rachel: Oh, no, that's sounds even worse.

STC: Oh, now we're talking.

Rachel: No, no, no. You're turning me off my dinner.

Jamie: In Jo's workshop in Lisbon last week, which was "Benefit to Burden: Deprescribing at the end of life". The conversation about glugging in this case, Oramorph / Morphine in the middle of the night from the bottle. As a reality of people's, the context of their daily lives.

Rachel: Oh my God, that's so sad.

Jamie: The thought that somebody is getting up and measuring out 5ml into a spoon or a cup or a syringe then gluggling, is what happens.

STC: Yep. Okay. So Rachel, you can, are you gonna go for Gaviscon then, or paracetamol?

Rachel: No, it's gonna have to be Gaviscon. Now that you're reminded me of Gaviscon.

STC: There you go. You just weren't thinking hard enough today, obviously.

Rachel: No, no. There was. I spent in the whole day thinking about it.

Jamie: For the listener, Rachel. Come alive on the screen. Having been-

Gimmo: -worrying about this all day.

STC: What did I say about being yourself?

Rachel: I was stressed. I've been stressed to the hilt all day about it.

STC: So we've got Gaviscon, we've eeked it out of you and well, it's got a long generic name, hasn't it? Sodium, potassium, bicarbonate, dimethicone, simethicone, et cetera, et cetera, et cetera. Just think about the fireman advert. Okay? Right. So Gaviscon goes into the Aural Apothecary Formulary. Okay. Next thing then is a song choice, Rachel, for the Spotify Aural Apothecary playlist, what would you like to give us?

Rachel: Uh, it can't just be one song. Now that's just unfair.

STC: No, you only get one.

Rachel: Well, can it could be one artist. It has to be Dolly. Everything has to be Dolly.

STC: Oh, Dolly Parton. We haven't had that; we've had Shirley Bassie.

Rachel: Well, sorry, Dolly Parton's the legend.

Jamie: Oh, we've had Kenny Rogers.

Rachel: Yes, I was watching a program with her the other night, documentary, and I absolutely love all her music cuz you can dance, you put Jolene on and you can get the most boring people up to dance.

STC: Yeah, yeah. You've got it.

Rachel: She's such a legend and people judged her, didn't they? For so long. Cause of what she, you know how she looks and she's just this amazing person. Nobody can stay sitting when her music comes on. Well, not if I'm in the room.

Gimmo: So which one?

Rachel: Oh, we'll have to go with Jolene then, won't we? Cause that's the one that gets everyone moving.

Gimmo: I love it.

STC: Do you know what? That will sound beautiful on the eclectic mix of music, and it really is on Spotify. If you go to Spotify and put "the Aural Apothecary", you don't just find the podcast, you find the playlist. It's got over 55 tracks on it, I think now.

Rachel: Okay, I looked today and I couldn't find it, but I will look again.

Jamie: Oh, maybe we should link from our new website www.theauralapothecary.com.

STC: Yeah, it is on there. So, I listened to the whole, I listened to every single track in order cuz, I'm a pharmacist, on the flight to Lisbon and it was ace.

Okay, so Jolene by Dolly Parton makes it into the Aural Apothecary Spotify playlist. And the third thing we're after, Rachel is a book for the listener for the Aural Apothecary library. What would you like to give us?

Rachel: Okay, that one was hard too. You see, I just don't make decisions very easily cause there's a lot of, there's a lot of choices in this.

But, I think when we look at what's happening with patients and patients waiting for treatments and the delays and the impact that has in their lives, there's a fabulous book that I read a few months ago, called The Choice, and it's written by a woman called Edith Eger, and she survived Auschwitz and she's now in her nineties and she, I think she's a psychologist, and it's just amazing cuz she tells stories, her story, but then she tells other people's stories through her practice. And all of that is around courage and resilience and having that emotional resilience but also acknowledging that what one person might be very worried about, might seem quite simple and easy to you, but it's that person's worry and you've got to work with them.

But it is, it's a really powerful book. And you should all read it. Yeah, no, you should read it. It's a really good read as well as well. It has been quite heart breaking.

Gimmo: So what's the significance of the title in terms of choice?

Rachel: I think it's probably, you'd have to ask her that, but I think it's probably more that she had a choice when she came out of Auschwitz and her choice was to survive, and then she brought that into her practice as a healthcare professional.

And her choice was the resilience and working with it. But despite the horrific pain that stays with her, she does amazing, you should get her, to interview her. But she's done on Twitter, she did Women's Hour a few weeks ago, you should just put her in and put Women's Hour on and listen to her.

And she's written another book, which is called The Gift. And in it there's like, I can't remember how many chapters there is, but it's the 14 things you need to do to save your life. And it's about, you know, survival, but acknowledging that actually your pain is your pain and you have to be allowed to feel it. So I think it's really good.

STC: Okay, so "The Choice" by Edith Edgar?

Rachel: E G E R. Eger

STC: Eger. Yeah, Eger. Okay. Sounds like a perfect read for this Easter.

Rachel: Yeah. Tell me if you enjoyed it. No, seriously, it's absolutely brilliant. Like you, you will cry, but you then just go, oh my God, that's just so amazing when you read other stories about how people have got over things and her story is just unimaginable experiences.

STC: I didn't wanna stress you out at the beginning, Rachel, when we didn't wanna tell you that we don't use the word amazing on this podcast, but you've used it four times already, but it's fine.

Rachel: Why don't we use the word amazing?

Gimmo: Steve doesn't use the word amazing.

STC: No. So I have this thing about amazing, and I was like, what's amazing is if you look up into the sky and you see a billion stars. Right. That's amazing.

Gimmo: One person's amazing is another person's mediocre, Steve.

STC: Exactly right. Okay, now put me in my box.

Jamie: Share with a the listeners your news from today, Steve.

STC: Ah, well, if you know that I listen to a lot of podcasts and I always go on about how I think amazing is used too much in, in a banal way. So I've been keeping scores on “The Rest is Politics” as the number of amazing’s that have been used by the two people on there, Alistair Campbell and Rory Stewart. And today, so every week, I send a reply saying how good the podcast has been. And today it was obviously just a fluke that I got a like by Alistair Campbell, one of his 1 million followers, when I told him that: "a very dull three-all draw this week, if we ignore the plethora of Amazing’s used by, and in the company of the governor, Gary Lineker, on the Leading podcast. So, the 2023 'amazing' League scores are now Campbell 13, Rory Stewart 54. So, there you go. Anyway, too much.

Rachel: Okay, well if I'm up there with that podcast, I'm happy.

Jamie: We're all happy. Our micro discussion next, looking at the Sunday Times article, 'the NHS is flatlining- hears how to save it right now' by Sean Linton. Just a reminder, look, what does it contain? Did you get a chance to have a look at it, Rachel?

Rachel: Yeah, I've seen it before as well.

Jamie: So home safety checks at number one. Let pharmacies do more at number two. Curb the multiple drugs in at three. Pre-surgery health checks, better follow up care, communicate better, unblock the beds, embrace genetic testing, suspend inspections, look after staff. What were your thoughts and what did the Patient's Association have to say about it when it came out earlier in the year?

Rachel: Well, they all kind of interlink, well, quite a few of them do, but for us, the one that we would sit with at the moment because of what we hear from patients and what we just heard in our recent patient survey is to communicate better. And it's definitely around getting your appointment, be it with your GP or your hospital appointment, getting through, finding somebody who knows what's going on, making wayfinding through the system easier, understanding why people may not turn up to their appointments because of all the other things that are going on, and keeping people very busy and working in partnership. And if we can get the communication and the listening and hearing working within the NHS, then I think a lot of the other bits will be sorted.

STC: Excellent. So communication,

Rachel: Communication is key. Communication and partnership working.

STC: It's the big C, isn't it? So I've said for a while that the big C in healthcare is not cancer, and it's not covid, it's communication. So, I'm glad we, we agree.

Gimmo: So my mum-in-law was in hospital recently with had a fall and having a hip replacement. And it was just terrible to be honest. In that, getting any information for my father-in-law who obviously was trying to go in to visit, and then when he was asking people on the ward what was happening, nobody knew. And nobody was sharing information with, and this was in a hospital that, my wife works in. And a similar experience with someone in work who had, I won't share the details cause I haven't got permission, but, in both circumstances, if a close family member didn't work for the NHS , I'm not sure what would've happened. Because having that contact in the NHS that helped that person to navigate the system much better than that and, you know, I think that must happen a lot is that if you know the system or you know someone in the system, it's still who you know, not what you know. So yeah I can resonate with that communication issue. I think it's probably worse because people are, are too busy.

Rachel: And so, well I also think it's about, it's about people. It's about resource, it's also about tech. It's also about that shared decision making. But in our recent survey, many people talked about struggling to contact the service they needed and waiting long times and some people said they couldn't contact at all and they couldn't get any support for their healthcare needs.

Jamie: Number three in the list is curb the multiple drugs. And so I'm just gonna mention, look, he's a friend and supporter of the show, Dr. Sam Finnegan.

Rachel: Ah, I love Sam Finnegan.

Jamie: GP from Sutton Coldfield   And he's just published a blog. “We threw the guidelines at her”. So we'll put it in the show notes or link to it in the show notes. And it's a story of vignette about a patient that gets admitted is on one item, one medicine when she gets admitted and comes out and the guideline driven view of the world, protocol driven view of things, she comes out on 1, 2, 3, 4, 5, 6, 7 items. So, it's a welcome read and fits nicely with the narrative of this podcast.

Rachel: Oh, brilliant. I'm looking forward to reading, he told me about that story, so I'm looking forward to reading the blog. And that's about what matter to you question.

Jamie: Okay. A big thank you to Rachel for joining us on the Aural Apothecary and for sharing her stories, her desert island drug, we got there in the end, her career anthem and her book for the Aural Apothecary library.

Coming up next time we'll be joined by Trevor Silvester. Trevor is a British therapist, author, and trainer who is best known for developing cognitive hypnotherapy. Join us next time on the Aural Apothecary. You can contact us via Twitter @AuralApothecary. We are on LinkedIn. Visit our new and shiny website www.theauralapothecary.com and you can email us at auralapothecarypod@gmail.com.

Over to Gimmo now for the final ingredient.

Gimmo: Okay, so thank you again, Rachel. That's fantastic and really nice to meet you. So I've got a final ingredient here, so, as Jamie mentioned earlier, we were originally due to record an episode with a patient about pain and it was right next to International Women's Day.

So I was really pleased with myself that I found a story that combined pain and women, so I'm gonna use it anyway. So what links pain and women? Well, It's a theme that's run as a thread throughout the history of this podcast, and right back to episode two, when we talked to Clare about the idea that healthcare systems are predominantly designed around men, rather than women, and women often suffer a result of that poor design, so this survey of looked at when a man consults a doctor about pain, he will hope to be taken seriously to convince the doctor that the pain is real and a problem needs addressing, The experience is different for women who may suspect that gender stereotypes could lead their doctor to conclude, they're not in as much pain as they say they are, and unfortunately, this suspicion is valid. Evidence suggests that healthcare staff routinely underestimate patient's pain and particularly women's pain based on a number of biases and beliefs that have little to do with actual testimony. So the study in the brilliantly named Journal of Pain, report on the conversation shows that men's pain was consistently estimated as higher by observers of consultations compared to women.

And of course that led to differences in what they were prescribed and more worryingly, a high likelihood for women to be prescribed psychotherapy. So there we have it. I suppose another example of the bias in healthcare being stacked against women. The article concludes by saying “there is much to be done by clinicians to abolish the inequities and pain”. But we need more research, but at least this study should help healthcare staff reflect on their own social and personal biases that they may bring to their practise.