Reducing benefits will not get disabled people back to work, and explaining overdiagnosis
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Welcome to the Medicine and Science podcast from the BMJ. I'm Helen MacDonald, Integrity Editor at the BMJ. This week, we'll hear how cuts to benefits will not produce the results the Chancellor wants.

If they are genuinely committed to improving the health of the population, to creating better and more employment and having a sort of just transition towards a low carbon future, we know what to do. But they need to follow and listen to expert advice around this and be braver. And are we in an age of diagnosis?

It's such a nuanced topic that requires a lot of explanation. I'm sure a lot of people felt that he was saying, "Hey, there's nothing wrong with you," when really the subject of overdiagnosis is not about saying people aren't struggling. It's about asking when too much medicine is too much.

Rachel Reeves, the UK's Chancellor, presented her spring statement recently and it included £5 billion of cuts to benefits, many of which will be borne by those with long-term disability allowance. In response at BMJ, we published a hard-hitting editorial, UK welfare reforms threaten health of the most vulnerable.

Niamh Brooks, our editorials editor, spoke to Gerry McCartney. He's a professor from Glasgow University's School of Health and Wellbeing, and he talked to her about why he's so against these cuts. What was it in that spring statement that you felt needed writing in this piece?

So the background to this is that we've been worried about mortality and life expectancy trends in the UK for some time now. After 2012, that stopped improving on average, and indeed it started to decline in the most disadvantaged areas. And the evidence is now quite clear that it's austerity policies that have driven this both in the UK and in other places.

And obviously in the Chancellor's statement and in the Green Paper published the week before, there was an attempt to save money, I guess, from the government's balance by cutting eligibility to, in particular, personal independence payments. So those are payments that are made to cover the additional costs of disabilities.

So for people who are already struggling with their health, who have already got a particular vulnerability, and this will reduce their incomes. And so we're very concerned that this will further worsen their health.

and ultimately be sort of counterproductive to what the government's trying to do at the moment. Okay, thank you. And what sort of effects do you anticipate might come about as a result of these sorts of cuts? I have seen some figures around talking about the numbers of people that could be potentially pushed into poverty as a result.

Absolutely. So hundreds of thousands of people are modelled or predicted to be pushed into poverty as a consequence of this reduction in PIP eligibility. And

And of course, this comes on the back of, if you like, 15 years of retrenchment in social security. For people with disabilities in particular, their costs are even higher than the average because by necessity, people will often have to stay at home more often. They'll have to have their heating on more often. They often will have devices that will require electricity and other energy resources. And so their costs are high.

And this cuts that sort of vital income stream that they need to protect their health and keep themselves and their families out of poverty. Of course, yeah, thanks. And I'm interested that in your editorial you wrote about the fact that

Obviously, there are huge negative effects, as we've described, but that this plan might not even work in terms of addressing the problems that it's set out to achieve. So in terms of things like getting people back into work. Can you tell me a bit more about that? Of course. So the government is, I guess, rightly concerned that the health of the population has got worse.

And that has been a problem in terms of people being available for work. And that's had economic consequences. However, what the government hasn't quite understood, I guess, is that the underlying cause of that rise in ill health. So I've talked about mortality, but I haven't mentioned that mental health is getting worse on average for the population. But for young adults, it's really getting worse quite quickly. But also things like healthy life expectancy have declined over the last few years. So

It's not just mortality, but morbidity and ill health are all getting worse. And again, that's all because of the changes in the economy, the austerity policies that have been brought in.

And so to try and fix that problem, the government has essentially doubled down on the very same policies that have generated the problem. So it's absolutely true that we need to help and support the population to be healthier, and that will have consequences for the economy and hopefully allow more people to be available for work and to participate in society. But to cut those vital social security benefits, to cut public services behind the scenes, if you like, that's going to drive more people into ill health.

But there are specific studies and indeed there's a systematic review done by colleagues at the University of Liverpool, so Phil McHale and colleagues, which looked at the evidence across OECD countries about whether reducing the value of disability benefits pushes more people into the workplace. And the evidence was no, there's no evidence that that does work. So even in its own terms,

As the government have laid out, so they're hoping that these kind of reductions will move more people into employment. There's no evidence that that's happened in other places. So it's not clear why that would happen here now. So what is it about the UK, do you think? I mean, you've mentioned austerity, but you also mentioned that the UK is sort of unique in that it hasn't bounced back in terms of population health after the pandemic. What are the factors that have affected that?

So it's almost unique. So the USA is another sort of outlier, if you like, in the international picture. But many countries have shown sort of worst trends over the last decade or decade and a half. But the UK is particularly bad. And it's particularly bad, I think, because austerity was readopted really quickly following the sort of peak of the COVID period where

You know, money was spent, people's benefits were uplifted for a brief period of time. We had the schemes to protect people's pay from employment when they weren't able to work during the pandemic. So there was an awful lot of additional spending for that short period, but it was all reverted back to the previous austerity policies quite quickly.

And that comes on the back of, you know, decades of kind of erosion of public services. So if we compare ourselves to the rest of continental Europe, public services are just better funded. There's better eligibility. There's less stigmatisation of social security benefits.

The amount of compensation you get if you move out of work because of ill health is much higher in most of continental Europe. So we're just a bit of an outlier. We're much more similar to the USA in some ways than the rest of Europe. And as a consequence of that sort of frayed social security system, that frayed welfare state, the health of the population is just not as well protected. And there was also clearly a lot of problems with how the COVID pandemic was managed.

And so that has also created, you know, a large backlog of people who didn't have their healthcare needs met at the time. And that's coming to pass now where we have this kind of large sort of cohort, if you like, of people with unmet healthcare needs. And that's all just coming through now and the number of people who have got disabilities and ill health. And finally, really, I suppose there is an argument sometimes that there is too much focus on growth.

at the expense of other aspects that we should really be looking at in terms of health and wellbeing. Could you just talk a little bit more about growth versus wellbeing as a concept? It's something that we hear quite a lot about, especially at the moment with this kind of environment.

Yeah. So the problem with economic growth is that it's a very undifferentiated outcome. So if I was to take a brick and throw it through my window, that would increase economic growth because somebody would be employed to come and put a new window in. A policeman would be employed to come and take me away and a prison officer would be employed for the next few years to keep me locked up. But none of that's for the greater good. None of that creates a sort of public benefit. And so we count everything, the goods and the bads in society, all as one lump.

And indeed, we count often the externalities. So the things that businesses do that cause unintended problems elsewhere in the economy or failure demands, as you might call it. So if we live in an economy which has high inequalities, that will generate large amounts of ill health, that will generate crime, it will generate all sorts of social problems. And that all demands public spending to sort of sweep up the problems. And arguably,

drives to increase economic growth, as we've seen with the Labour government recently, have often led to a sort of reduction in the amount of regulations that are there to protect us. So whether that's regulations around water quality or air quality or building new airports, it's all of this pursuit of the short-term economic activity that will have detrimental consequences in the longer term. So we know that

this undifferentiated form of growth isn't necessarily good, but there are some things that we do need to grow. So I've talked about investing in public services. That's the kind of growth that will support public health, that will support educational attainment, that will support social outcomes. That's the kind of flourishing that we need.

But if those forms of economic growth just create other harms in the economy, so whether that creates low paid work or unfulfilling work, if it creates greater inequality, if it creates health harms, for example, air pollution from building more airports or motorways, you know, that's not worth it. That's just creating failure demand for the future. So we need to take a very different approach, which prioritises social,

health, ecological and equity outcomes. And that means a redesign of how we think about the economy and how we measure economic success. So we shouldn't measure economic success in terms of economic growth and GDP rates. We should measure it on those social, health, equity and ecological outcomes. Yeah, I suppose there's the argument that if without a healthy population, we can't have any growth anyway, or it's going to be stymied by that. So is there anything else you'd like to mention that you brought up either in the piece or that

you feel you'd like to say at this point? Well, I would just, I suppose I would, you know, in a direct appeal to politicians, just to say that, you know, the evidence is there and it's quite robust about what is driving these health trends. And we know what works.

And if they are genuinely committed to improving the health of the population, to creating better and more employment and having a sort of just transition towards a low carbon future, we know what to do. But they need to follow and listen to expert advice around this and be braver. And I think if they are following that advice, then academics will come in behind them. They will support that and they'll say, look, the evidence is clear that this is going to work. But at the moment, I think they are

not listening to that evidence sufficiently. And the risk of that is that we just create and store up more problems for the future. Let's hope they do. Thanks very much, Gerry. It's been great to talk to you. Thanks very much, Niamh. And that editorial can be read online now at bmj.com.

Now I'm joined by Suzanne O'Sullivan. She's a consultant neurologist at the National Hospital for Neurology and Neurosurgery in London. And she's the author of some award-winning books on medicine, particularly in the area of medicalisation. I talked to her about her new book, The Age of Diagnosis, Sickness, Health and Why Medicine Has Gone Too Far.

Suzanne, thank you so much for joining us. Can you begin by telling us a bit about yourself? Sure. Yeah, I'm a neurologist and clinical neurophysiologist at the National Hospital for Neurology. I have been a doctor since 1991 and a neurologist for the last 20 years. And just in the last 10 years, I've authored four books, the latest one.

is the age of diagnosis about my obsession with medical overdiagnosis. Tell us where that came from. Yeah, well, I have been a doctor a really long time. And in the last kind of 10, 15 years, it has been really hard not to see how many exceptionally young patients who come to see me have big long lists of medical diagnoses.

And very often they kind of don't seem to be leading anywhere. They're sort of labels that explain symptoms, but aren't necessarily resulting in any sort of treatment pathway or improvement. Sometimes it feels a little bit like labels for labels sake. And, you know, that's been a growing concern of mine. And what took you to write this book?

Well, I mean, I kind of start this book with the story of a patient that I've looked after for a very long time. I'm calling her Stephanie in the book, and she's a lady who I look after. She has epilepsy. And, you know, I have completely failed to make her epilepsy better. I haven't known for a long time why she has epilepsy. And then a few years ago, we noticed that she also had difficulty walking. And again, this was sort of

And then in a chance conversation with her husband, he said, oh, well, Stephanie walks exactly the same way as Abigail. Abigail was her 15 year old daughter.

And, you know, you can imagine as a neurologist, we love these little clues that for an undiagnosable patient, we suddenly get a little clue that says, hey, you know, perhaps it's a genetic problem, you know, and then suddenly you're going down another pathway. And we did ultimately, I sent both Abigail and mother for a

series of genetic tests. It took years and eventually we discovered they had an extremely rare genetic mutation. Now, as a doctor or a neurologist, I'm supposed to be, and I suppose I probably was at the time, thrilled with this sort of, you know, I'd done exactly what I'm trained to do. I'd found the rare diagnosis. I'd uncovered something that had been very difficult to uncover.

But later, I began to really regret much of what I'd done, if I'm being honest. And that's why I start the book with this story, because Stephanie had been sick for a long time. She needed a diagnosis. Abigail was a 15-year-old girl who people at school teased her a little bit because she had a funny walk, but she didn't consider it a problem. She, you know, she was good at yoga. She was bad at running. That's as far as it went for her. She had the same problem as her mother, but she could have waited 20 years to find that out.

And that for me is the sort of the absolute definition of over-diagnosis. You know, I made a diagnosis, it was right. But had I really acted in Abigail's best interest? And I think, you know, as a medical community now, there's a real drive towards finding things earlier, finding things in milder stages, you know, doing screening in lots of new ways. But I wonder...

if we have fully thought out the impact of that on the people who were subjecting to these diagnoses. I mean, Abigail, I spoke to many years later and I was glad that I hadn't really impacted her life or how she lived it. But I didn't know that really when I sent her for those tests. I didn't think nearly enough about what a difference I could have made to her life.

And by overdiagnosis, you mean labelling someone with a disease that's ultimately not serving them, it's not changing their outcome. Yeah, so I don't mean... I think oftentimes when I talk to the general public about overdiagnosis, it's misunderstood to mean the diagnosis is wrong or the diagnosis, you know, the person is complaining in some way that doesn't deserve attention. What I mean entirely by overdiagnosis is that

I may well have diagnosed someone entirely correctly, but that I have potentially the diagnosis hasn't been of benefit because it's been made too early or perhaps it's been harmful because it's changed their relationship with their body and changed their relationship with their health.

And this week, or recently, there's been news of soaring benefit costs and diagnosis of disabilities and discussion of why cutting that financial support can threaten some of the most vulnerable people in society. So it must have been a very hard week to launch this book about over-diagnosis and to be touching on some of these conditions. How do you try and reconcile those things? Yeah, so it's always, I think, you know, when people hear about

someone talking about overdiagnosis and wanting to kind of cut down on the number of medical diagnosis being made, I think, you know, minds very rapidly go to the concept of cutting benefits or cutting support. Absolutely not my agenda at all. The message I'm trying to get across with this book is that

overdiagnosis doesn't mean a person isn't struggling. It doesn't mean that a person doesn't need help or support. It's just that perhaps medicalising that struggling isn't the optimum thing. So I still want to be able to, you know, recognise people who need better social support or recognise children who need better educational support or recognise people who are suffering and need better psychological support. But what I'm really advocating for is can we do that

a little bit better without necessarily labeling people because I think it's the labeling that worries me the most.

It was interesting reflecting on the conversation that the health minister was having and actually using, seeing the words over diagnosis, which has become quite familiar in publications like the BMJ. But my sense, maybe I'm wrong, is that you don't see that word so much in public discourse. What did you think about how he used that word or how that messaging may have gone down with the broadcasters?

broader public. Yeah, I strongly suspect it was misunderstood. So I think, you know, Wes Streeting in conversation with Laura Koonsberg, you know, acknowledged that he thought there was an over-diagnosis problem. I have to say that, you know, I've been reading the Too Much Medicine kind of thread in the BMJ for a long time and been very influenced by it.

I felt that when Wes Streeting mentioned overdiagnosis that I agreed with what he was saying, but I was absolutely certain that people listening would not understand what he was saying, that they would probably, you know, it's such a nuanced topic that requires a lot of explanation. I'm sure a lot of people felt that he was saying, hey, there's nothing wrong with you. When really the subject of overdiagnosis is not about saying people aren't struggling. It's about asking when too much medicine is too much. Yes.

And we've long been championing that movement. As I say, it's quite familiar. How do you think

we can improve the conversation in the wider public about some of these issues. Well, I suppose I'm hoping everyone will read The Age of Diagnosis and that basically that will make a difference. I think people, you know, it's interesting to me because I've been reading the Too Much Medicine articles in BMJ for a long time, you know, and equally other campaigns around the world like Choosing Wisely, for example. So I'm aware that within the medical community, you know, I think sometimes when I bring these things to more general public audiences, you

People think that I'm sort of raising something that hasn't been raised before. But these are issues that many doctors are very concerned about. And I know that I'm far from the only person who's writing about this. I just think it's really necessary for us to raise public awareness through more honest conversation. I think it can be very difficult for doctors to discuss this issue because it's very easily misunderstood.

It's sometimes seen as rationing. You know, if we say we want to do less tests or that perhaps this much screening is too much, we should make it more focused, for example. I fear that it's seen as rationing. I think it's about kind of helping people have a better understanding of the harms of overdiagnosis because there's such an interesting paper in the New England Journal in 2017 that compared...

cancer outcomes in high-income versus low-income countries. And what they discovered was that in high-income countries,

Cancer was diagnosed at much greater rates, but mortality rates were similar for both high income and low income countries. There's a perception that all this extra care that is available to us in high income countries is better medical care. So I'm not talking about rationing. Papers like this are telling us that some of this care might actually be unnecessary care. I just want people to understand the issues so they can choose for themselves.

Thinking about how to improve that conversation, particularly that public conversation, have you found good ways that you've come across and maybe some techniques you've used in your book

To succinctly and clearly explain these concepts better in a way that engages with the public lands better. I'm not sure that I've necessarily found clearer ways. You know, in the book, I really am concentrating on the stories of real people and trying to help people to understand...

you know, the sort of consequences of overdiagnosis through following kind of real life stories of people. And I do think that helps sometimes. But I think it's more about, it's less about kind of making the concepts clearer. And it's more about sort of letting people know that addressing overdiagnosis isn't about

going back to old days where, you know, people went to the doctor too late with stuff or where mental health problems were stigmatized and you didn't feel you could come forward or when children, you know, in school were struggling and nobody even noticed. I think the fear that is raised when we talk about overdiagnosis is that

we are going to suddenly kind of shut a lot of people out from getting support that they have at the moment. And I think that's key really is letting people know that, you know, it doesn't mean over-diagnose doesn't mean you're not struggling. It means that perhaps medicalising the struggling is the issue. I think a book like yours is really interesting because one of the things that's been so difficult, I think, for the over-diagnosis community to really articulate is, you know,

the personal aspects and seeing those cases. Because it's often the case that if you're diagnosed with something, overdiagnosed in particular, that actually in many cases you feel lucky because you feel like you got your diagnosis in time, that maybe you're one of the lucky ones, that treatment has made a difference for you. So I think, were there any stories that stood out for you in terms of

anyone feeling like they'd be actually over-diagnosed themselves. Yeah, I mean, actually the point you raise is I am hitting against this as a sort of, that's a really difficult concept because exactly as you say, when a person is diagnosed and then they're treated and they're okay, they have the feeling that, you know, they were glad they were diagnosed. And even in sort of communicating messages of cancer over-diagnosis, which is a really delicate issue because you don't want to encourage someone not to be screened, but rather to encourage them to understand the results.

people relate more to the life that was saved than they do to the lives that were affected by overtreatment. But the second story in the book is one that is about a really rare condition, or not exceptionally rare, but Huntington's disease. And it doesn't sound, it's not an overdiagnosed condition, but this story was just so powerful to me because it said so much about the subject of the book. It's about a woman who, she was pregnant, she was 28 and pregnant, and she found out her mum had Huntington's disease.

Her mum was adopted, so this was a suddenly new bit of information for the family. Obviously, it rapidly changed her experience of her body and her experience of her health. As we know, she could have had an immediate test for Huntington's. But after discussion with a genetic counsellor, she decided not to because she realised that the minute you get a positive test, you are living as if you have the disease before the disease actually starts.

So she didn't test and she chose to live with hope in the first instance. She had her child. She was very happy. She enjoyed motherhood. She had a second child. But as the years progressed, she realised she was seeing all of the symptoms in herself that her mother had had. She put off testing for Huntington's for 20 years until she got to a point where she was

Just really her personality had changed. She was bumping into things. She was flustered. She couldn't function. She ultimately had the test and actually as it turned out, the test was negative.

She didn't have the gene and she didn't have Huntington's. Now, I start with that story in the book because what I want people to understand is how powerful it is. Once you are labelled, I mean, she believed she had the gene and she believed she had Huntington's. The power of that to affect your entire physical well-being and the way that it focuses on your body and affects your day-to-day happiness is enormous.

I want people to understand because we're now increasingly saying to people, well, you can have genetic screening for this or, you know, you can find out you have Alzheimer's 10 years ahead of time or you can be screened for any number of diseases. I needed people to understand through this lady's story that, you know,

You know, a diagnosis is not inert. A diagnosis has a power all of its own to kind of produce symptoms even before the disease starts. So we need to be a bit more careful about how we hand out diagnoses. And I wonder how you...

described the concept of the book, putting all that together to the patients that are featuring it. What were their thoughts? How did they feel? Yeah, well, everyone, you know, I've written about a lot of things, autism, ADHD, cancer, Lyme disease, genetic tests, really what people want their stories told. That's pretty much it. You know, so I had a lot of really generous people come forward and tell me their stories because I think people have

want others to learn from what they've been through. The book sounds fascinating. If you don't have time to read it in full, we'll include a link to an edited extract of the book, which was published in The Guardian, and you can find that online. Overdiagnosis poses some really challenging ethical issues as well as communication ones. So finally, I'm joined by doctor and ethicist Siobhan O'Sullivan, who's starting as the new chair of BMJ's Ethics Committee.

Siobhan, thank you so much for joining us. Can you begin by telling our listeners who you are? Thank you so much, Helen. Well, my name is Siobhan O'Sullivan and I have the great honour of being the incoming chair of the BMJ Ethics Committee.

So I have a background in translational medicine, so spent some years as a researcher myself and then transitioned into the area of medical ethics and law. And that's where I've been working for the last 20 years.

Wonderful. And in fact, as we met today, you pointed out to me that the BMJ's Ethics Committee is 25 years old, which is a really intriguing thing. And it's something unique that we have to the BMJ. We're not aware that any other journals have one. And we're really grateful to the advice that the Ethics Committee give us in terms of our policies, in terms of challenging cases that we face at the journal today.

Thinking of our listeners, what strikes you as important or unique about the role of journals in health and healthcare from an ethics perspective?

Yeah, this was something we were thinking about, I suppose. And I would say from my perspective, one thing that strikes me very strongly is that, of course, journals are the gatekeepers, if you like, of the knowledge base that we are using for all sorts of decisions we make as a society. So not alone, other researchers will, of course, read articles in all of the BMJ journals.

and will then decide how they will construct studies in the future, will use hypothesis, will use other evidence to build their own studies on. But policymakers will also use that. And policy is not an abstract thing. It's actually something that will impact on each and every one of our lives. And it's important that that policy is based on evidence, is based on knowledge that we can trust,

And because, as I say, it does have that impact on people's lives. And so I think the journals, the BMJ, all of the journals, it's really important that they can stand over the evidence that's being published in journals, that we act with integrity and that that is that evidence is trustworthy.

And looking forward from now, how do you see things evolving? What are the big issues that ethicists are thinking about at the moment that we might expect to see filter through our journals or we might expect our listeners to be seeing walking into their clinics?

I think it's really interesting. It's an interesting moment. And we're doing lots of work, I suppose, ethicists are always thinking about strategic foresight, trying to look at the future. It's not as we were discussing earlier, it's nothing to do with actually predicting the future. I don't think any of us, including ethicists, would be so bold as to do that. But it's about being prepared for the kind of different futures that are facing us. I think we're going through a moment where

where there's a lot of impact of technological change. We've seen that with Gen AI. We've seen it in terms of neurotechnologies, other areas that are really impacting and will impact. I think at the moment we're seeing that come through the research publications, but they're actually going to be entering into the healthcare arena and all of us who are availing of healthcare are going to start to see those actually impact in real ways.

I think the fact that we're having converging of technologies, so things like, for example, AI and genomics. So when we're looking forward, you will potentially, every baby who's born could have their future mapped out for them in terms of the kind of diseases they might be

susceptible to developing, how that then informs how you live your life, if you're going to be, if you have cardiovascular risk, etc., whether you will have that fantastic diet, Mediterranean diet all of us should be doing or not. But it also has other implications. And therefore, you know, those kind of things we really need to think about. How we govern science and technology is going to be an issue for all of us. And I suppose ethicists are particularly interested in that.

So I think it's a really interesting moment where we have a little bit this Janus kind of situation where we're looking forward and back because in many ways, many of these new technologies

like gene editing, et cetera. We really have to come to grips with them, what they mean for us. But also, we also have some of the problems we've always had, which is about access to health care. Who is getting access to health care? Is that equitable? Consent issues. So none of that stuff has gone away. And in fact, some of these new technologies are putting those into a different context. And so we need to grapple with both.

Thank you so much for saying hello to our listeners. And no doubt, we'll be putting you to good use. And I hope that you'll be writing something for our listeners or perhaps coming back on this podcast with Cameron to talk about some of the challenges that we and the world are facing. That would be a pleasure, Helen. Thank you.

Well, that's it for this episode of the Medicine and Science Podcast. We'll be back in a fortnight where we'll be discussing the new assisted dying bill and how doctors will have to decide who's eligible for a medically assisted death in the face of prognostic uncertainty. Subscribe so you don't miss out. Until then, I'm Helen MacDonald. Thanks for listening.