Saturday, April 13, 2024

Margaret McCartney | Holding Medicine to Account

by Editor

Questioning Medicine, Health, and Patient Care

Doctor, Writer, Researcher, Investigative Journalist, and Guardian of Truth and Honesty in Clinical Practice.

Margaret McCartney is a GP in Glasgow and a Senior Lecturer at the University of St Andrews. She is a freelance writer, columnist for the BMJ, broadcasts for Radio 4’s Inside Health, writes regularly for The Guardian and is a sought after media commentator. She has written three books, The Patient Paradox, Living with Dying, and The State of Medicine. She is a strong advocate of evidence based medicine and has written on risk, screening, professionalism and ethics. Her declarations of interest are at whopaysthisdoctor.org 

Watch the video, listen to the podcast, read the transcript below

 

“I honestly think that general practice is the best job in the world. And when I have a good day, and almost all my days at work have elements of being a good day, it is joyful. It’s fantastic to know your patients over a long period of time, and the families, and your colleagues, and the people I get to work with. it is brilliant. But it’s also terrifying because we see, every day, the absolute fragmentation.”

 

Margaret in her journalist role on BBC Radio 4 Too Much Medicine

Dr Margaret McCartney delivering the Cochrane Lecture at the meeting of the Society for Social Medicine & Population Health hosted by NIHR (ARC-NENC)  in September 2023

What I really like is how you put medicine under the microscope …tell me about your career and your current job.

Margaret McCartney: I’m a GP in Glasgow and I’m currently working half time. I’ve just being appointed as a Senior Lecturer at the University of Saint Andrews, which is great and will hopefully enable me to push forward with some research and constructive work around the things I’m interested in. And I do freelance writing and broadcasting, and I’m also a director of Beira’s Place, which is a rape and sexual assault in centre in Edinburgh.

DMacA: What really struck me was when you wrote about some of the things we used to do in general practice, that have been shown not to have evidence or, in fact, to be harmful. Tell us a little bit about those.

MMcC: The reason I became interested is because, not long after I was married, my husband was doing a systematic review into renal replacement therapy and he casually mentioned that breast cancer screening probably doesn’t really work because there’s not much evidence. I was thinking, that can’t be right. No one’s told me about that. And then I did a bit of reading. As a junior doctor at the time, these thoughts were percolating around in my mind. And then, when I was on maternity leave for the first time, there was an article published in the Independent newspaper saying that cancer screening, whole body screening, was the way to go – and that it was ridiculous that the NHS didn’t organize this for you and that everyone should have a full body CT scan once a year to pick up problems early- and, by that time I’d a fair idea that screening and early diagnosis was much more complicated than it might first appear. And I was so cross that the newspaper had printed that with no accountability that I ended up writing about it, and then continuing writing about it after that.

And what really scares me in medicine is that you can be thinking you’re doing the right thing, you can have moral integrity, you can have passion for your vocation, you care, you can want to help people and you can still absolutely screw up.  And it’s terrifying because, it’s not just about how clever you are, how much you’ve read, it can be that what you’ve read is wrong, what you’ve read doesn’t apply to the patient that’s there in front of you. The whole industry that’s brought you to the point where you think that this is the right thing to do for the patient may actually be inherently wrong from the very beginning.

And I think we saw that very recently. I was talking to someone about chronic pain and I remembered, when I was shopping in Glasgow a few years ago, there was a stall outside Buchanan Galleries, a massive shopping centre. They wanted people to come along and talk about their pain. There were two very nice ladies at the stall. They had leaflets that said – take this leaflet to your GP if you have chronic pain. Ask for better painkillers for nerve type pain.  There was a long list of all the symptoms.  Quite clearly the gambit was there for pregabalin / gabapentin and they were trying to encourage patients to go to their doctors to get this prescribed. And of course, we now know, and we would have known then had we asked the right questions, that It’s got lots of side effects. It has addictive qualities. It has withdrawal effects. It has a street value. It’s not that effective for very many people. And yet that information wasn’t being presented to people at the time they were being told to go to see their doctor because there are better alternatives for your pain.

“… and, by that time I’d a fair idea that screening and early diagnosis was much more complicated than it might first appear. And I was so cross that the newspaper had printed that with no accountability that I ended up writing about it, and then continuing writing about it after that.”

DMacA: You’ve said lots of things that I’d really like to follow up on. Some really interesting things. The first was in relation to screening, because I’ve seen you write about the patient paradox. Screening, in a sense, does create patients where there weren’t patients and there are patients who need help and don’t get help. Tell us about that.

MMcC: So, this is a book I wrote about a decade ago, that is probably quite out of date now, called “The Patient Paradox “.  The person who really started this off, was Julian Tudor Hart, talking about the inverse care law. To me, it seemed to be just a few steps further along from that because, not only have you the inverse care law, where the people at greatest need of help didn’t get it, but that people at the greatest need of health care still didn’t get it. At the same time we’re making people, who are not going to be advantaged by medical intervention, making them into patients to their disadvantage, and to the health service’s disadvantage as a whole, because it’s a limited resource. If you don’t make that cake bigger, people are going to get less of it. And, of course, those people that get less of it are the people that could have benefited the most to start off with. So it’s a double whammy. Disadvantage everybody.

DMacA: You also spoke about the pharma industry and creating the false hope of new drugs. And I think one of the things you spoke about was Alzheimer’s disease and the false hope in Alzheimer’s disease.

MMcC: My friend and colleague Deb Cohen and I have just recently done a large investigative piece about the new immunomodulatory drugs for Alzheimer’s disease that are going to be assessed by the National Institute for Health and Care Excellence this year. And what you see, particularly in America, is this huge push for these drugs. You see people making all sorts of claims that, I think, are almost entirely based on wishful thinking. Its very hard to beat the claims, not just the claims from the companies themselves, but the companies, of course, fund charities, they fund organizations, they fund stuff that’s going present a more emotive picture, to policymakers and funders. And it’s very hard to let people down and say, actually, these drugs are not as effective as this picture would have it. These drugs are very unlikely to have a massive benefit and allow people to live at home for longer, or to continue driving, or whatever. It’s very difficult when you come along with this bad news because nobody wants to hear that. I don’t want to hear it. I would much rather be saying to my patients- we need to get you on this drug, it’ll be fantastic. But that’s unfair.

And not only is it unfair to that person and their family, it also means that if you assume that this works, that these drug interventions are the right path to go down, that maybe we don’t have to worry about research in other areas that may actually be more beneficial. So, you’re biasing the whole system towards drugs that don’t particularly work and also away from things that, had they been better investigated and invested in, might have worked.

 

“You see people making all sorts of claims that, I think, are almost entirely based on wishful thinking. Its very hard to beat the claims, not just the claims from the companies themselves, but the companies, of course, fund charities, they fund organizations, they fund stuff that’s going present a more emotive picture, to policymakers and funders. “

Margaret together with Phil Hammond as pictured in the BMJ prior to their Edinburgh Fringe performance in 2016

DMacA: You’ve talked about some of the other myths, about drinking more water, and you’ve challenged homeopathy. How do we prevent these myths being taken at face value?

 

MMcC: There’s regulation. It depends on the claim that you’re making and who’s making that claim. So, if you’re making a claim as a regulated professional, you shouldn’t be allowed to because there’s lots of research evidence saying that health care professionals

are trusted more than the average person. Therefore, I think there should be a higher standard. And you get this, particularly where there are financial conflicts involved, where people are selling something. Either they’re selling private appointments or selling supplements or they are making money directly out of the claim that they’re making, and that claim is not valid. So, I think the regulator should take an interest in that. But we know that they don’t. I’ve certainly tried over the years to get regulators to become interested in this kind of stuff, and I’ve really had very little helpful response from them.

 

But then there’s also ‘where’ people are making claims. If they’re making it on an advertising platform of some description, there should be some kind of regulation about that. But the thing I find most invidious is when people are making claims in media through a conduit, through a journalist, through someone like that, and there’s a bit of truth

in what they’re saying, that there might be something in that, but it just goes well beyond the evidence and you don’t get a chance to reply. You don’t get a chance to discuss it or debate it. Just now in the UK we’ve got this massive poster campaign from one of the prostate cancer charities saying that all men over 50, and black men over the age of 45, I think that’s what the algorithm says, should speak to their GP about prostate cancer screening. And we know that this is extraordinarily contentious, very difficult. Certainly, its not recommended by the UK National Screening Committee who make independent judgments about this. And, actually, they say that GPs shouldn’t raise PSA screening with asymptomatic men because it’s not best evidence.

 

So, where do you go with that? They’re making this claim. That automatically means that general practice does not have the capacity to do other stuff.  There’s nobody that I can get to try to come to some kind of middle ground. They should be entitled to say what they want. Freedom of speech is what I’m here for. But equally, they shouldn’t be allowed to give partial information to men. If they want to say that, they should also be saying- but this is not recommended by the UK National Screening Committee, who are independent, this is not recommended by the NHS as a whole. But men are not getting that information. So they’re going to see the GP and then it becomes my job to say, you can have a test if you wish to give informed consent, but we really need to go through that first of all- there’s other information that I think you should have before you make that choice. I’m never going to refuse a man, but equally I think it becomes very difficult for GP’s when we’re immediately put into this position where we’re having to give the rest of the information that somebody didn’t come in with.

 

 

DMacA: We’re up against it with the pharma industry, but also with these various lobby groups. and many of them are charities. But doctors themselves aren’t immune to these problems. You’ve suggested that the doctor should have a declaration of conflict of interest as well.

 

MMcC: Although, I have to say, my thinking on this has probably progressed and changed a bit. About ten years ago or so, and I still do believe that doctors should make a declaration

of their interests, absolutely, which means that you should be open and transparent about money you’re taking, for example, from pharma, from tech, from industry. You should say where you’re getting your money from so that it’s on the public record and so that can be managed. The problem is that I think I was, and probably many organizations were, relying on this idea that if you make a statement of your conflicts that’s the management. And, actually, that’s not the management. All you’ve done is said what your conflicts are. And I think the inference for many organizations has been that if you make that declaration, everyone else will somehow treat the information you give prospectively with the knowledge that you have that conflict. But actually, we have lots of very conflicting research about what people think about that. There are all these phenomena that occur. For example, people feel that sometimes when they make a declaration, it absolves them so that they don’t have to worry so much about it anymore because they’ve been honest. There’s other research that says that, when people hear a declaration of Interest being made, they may think that that person is more honest and therefore more trustworthy. And yet we have no evidence that that is the case.

 

In the research that we did at the University of St Andrews, we asked people what they thought about declarations of interest.  First of all, they couldn’t find them, even for very famous doctors who were giving advice in the public domain. They couldn’t locate these declarations. And, these were people that had made declarations and yet they were kind of opaque. And then when they found the declarations, and when they looked at them, they didn’t really know what to make of it or how that information should be recorded. And that was similar for both professionals and for laypeople. So, we’ve basically got a situation where people think that they’re being great and honest. And yes, I would absolutely encourage transparency. But the question is, what do you do with that information?

I would argue that we are allowing people to stay in the room with a conflict of interest when the correct management would have been to declare it and leave, because you shouldn’t be allowed to influence the conversation where you have a conflict. So, we’re allowing these conflicts to be managed rather than to be excluded.

“we asked people what they thought about declarations of interest.  First of all, they couldn’t find them, even for very famous doctors who were giving advice in the public domain. They couldn’t locate these declarations… And then when they found the declarations, and when they looked at them, they didn’t really know what to make of it or how that information should be recorded.“

Health and Sport Committee – Scottish Parliament: 9th May 2017

Margaret McCartney as featured in BMJ Confidential in 2014

DMacA: Let me take you back a little bit, because you talked about the pressure on general practice, trying to do things that are encouraged to the deficit of other care for general practice.  Now, that’s a big problem and general practice is under huge pressure in many, many different countries. So finally, what do you think the future is for general practice?

 

MMcC: This depends on what day you ask me… Because I am inconsistent. I honestly think that general practice is the best job in the world. And when I have a good day, and almost all my days at work have elements of being a good day, it is joyful. It’s fantastic to know your patients over a long period of time, and the families, and your colleagues, and the people I get to work with. it is brilliant. But it’s also terrifying because we see, every day, the absolute fragmentation. I spend so much of my time apologizing to people or telling them

to complain to the MP about waiting lists. People, who would never have imagined going privately for something, have ended up using their life savings to get a hip replacement on the basis that they think they’ll be dead in ten years and they don’t want to wait half of that time to come up the list. We see the fragmentation in general practice as well when people, for whatever reason and access is an issue in general practice, they go to a private provider and they get, I would say, not always the same type of information that would get from a GP and the NHS, and they may be recommended to have tests, treatments or interventions, I wouldn’t have recommended, that wouldn’t be within my health board recommendations.

 

There are lots of gaps. Some of those gaps are ones that are created by industry, by pharma, by people prioritizing access over seeing the same people again and again,  continuity of care. Some of that might be people’s choice. But some, I think, is the government running general practice into the ground.  And this idea that general practice is a series of transactions and anyone can fill in, that things are simple, you’ve got an itchy eye or you don’t, you’ve got a sore throat or you don’t, everything’s split into little bits, I think that’s really bad for holistic patient care, while at the same time we’re still doing loads of stuff that’s a complete waste of time. So much bureaucracy, paperwork, IT that doesn’t work properly, systems that aren’t joined up between primary and secondary care. There is so much that we could do to make our job more efficient. And yet what keeps seeming to happen is that our core job, which is seeing patients, is getting taken away from us and instead, at times, being filled up with pointless, inane bureaucracy instead. And, I’m so angry about that because that could get sorted out if people wanted it to. And I just don’t think that the momentum or the will is there within central government to preserve general practice for what it is, what it could be.

 

DMacA: Margaret, it’s been a pleasure talking to you. So many people share your frustration and anger about what’s happening general practice and it’s great that people like you are fighting for it. Thank you very much indeed. It’s been a pleasure talking to you.

 

“And this idea that general practice is a series of transactions and anyone can fill in, that things are simple…I think that’s really bad for holistic patient care.”

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