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Tuesday 29 April 2008, 9.00-9.30pm
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CASE NOTES Programme no. 5 - Screening







Hello. Your car has an MOT check every year, so why not do the same for your body? You may not have any symptoms at the moment, but who knows what might be festering underneath your bonnet?

On the face of it, there's an irresistible logic in trying to pick up health problems before they start causing trouble, and while they're still treatable. The NHS offers several screening programmes from breast and bowel cancer to antenatal tests, and it's on the brink of adding aortic aneurysm screening to the list and under new government plans everyone aged 40 to 74 in England will be offered health checks for heart disease, stroke, diabetes and kidney disease.

So how do the powers that be decide that we will be screened for those conditions - but not, for example, prostate cancer or lung cancer? And is screening necessarily a "good" thing - is it a welcome lifesaver or is it turning us all into patients?

I'm basically very sceptical about mass screening because I believe that it has an adverse effect on the psyche of the nation in general. People become pathologised, we are encouraged to believe that we have to extend life at all costs, we are encouraged to believe that we contain ticking cancer time bombs and we're actually morally bullied into submitting to the fear, pain and inconvenience of the screening progress. And then we're made to feel guilty if we refuse.

I think it is a wonderful idea and I only hope that as many people as possible will take part in it and be restored to health as I have been.

With me in the studio to discuss these issues are Julietta Patnick, Director of the NHS Cancer Screening Programmes; Dr Ann McPherson, Oxford GP and co-founder of DIPEX, which researches patients experiences of health and illness; and Hany Hafez, a vascular surgeon at St Richard's Hospital in Chichester, who's been one of the pioneers of screening for aortic aneurysms. Welcome to you all.

Julietta, if I can start with you, what is screening then as opposed to say just testing or the normal stuff that goes on in a GP's surgery?

Well in a screening programme we will select people from the general population who have no symptoms or particular risk factors and we will invite them to participate in our programme which will involve for most people just a single test for early signs of cancer. And then if that single test has some worries about it we will bring them back and we'll do some diagnostic work until we can either return them to normal or say unfortunately they actually do have a cancer or whatever the other condition might be and they'll go forward for treatment.

So it's not a diagnostic test but a sort of early screening filtering sort of procedure?

Exactly. Most people just have that basic test.

And broadly you're in charge of deciding which cancer screening programmes the NHS takes up, what criteria do you and your team of experts use to decide which get the thumbs up?

Well we have a national screening committee in this country and essentially the question that the committee asks is, is the chance of benefit to the population greater than the chance of harm if we introduce this new screening programme.

And the cost effectiveness must come into it too?

Absolutely, the costs have to be in line with the sort of costs that we do spend in the NHS on other activities but we don't even go into costs if the chance of harm is greater than the chance of benefit.

So Ann McPherson, as a GP, these new over 40 checks that Gordon Brown's announced, do these come under that sort of testing that's been done on screening programmes, do you think they come up to scratch?

I think we don't know about that yet, as to whether they do, and I think we need to explore a lot more about what the evidence is for how good and useful they are. I mean already most people who walk into the GP's surgery will have their blood pressure taken and no one thinks it's a screening programme but in a way it is, we're screening to see if people have got high blood pressure.

Hany, you've been involved in aortic aneurysm screening, the Department of Health is taking that up now, can you just tell us a little about what that is and what's it's for?

Well the screening programme, as announced by the Department of Health, will involve inviting men at the age of 65 to undergo a simple ultrasound scan of their abdomen to look at the main artery in the abdomen, which is the aorta, and some small proportion of these men will have an enlarged aorta, what we call an aneurysm....

So the aneurysm is like a swelling?

It's a swelling, it's a localised swelling of an artery and in this particular case the artery of interest is the main artery in the abdomen which is the aorta. And those individuals who would have a slightly larger than the normal sized artery will be then identified and followed up as part of the screening programme.

And the benefits of doing a screening are that you pick up people before quite a catastrophic burst ....

Absolutely, absolutely. Aneurysms in general and particularly in the abdomen don't have any symptoms at all and once they become symptomatic it's usually too late for us to intervene and achieve good results from intervention.

So how have you persuaded the Department of Health - you and others - persuaded the Department of Health, have you had to gather a lot of evidence?

It was mainly actually by work by many other - they have conducted properly designed and properly run studies, large studies, which show that there is a certain benefit from picking up the silent aneurysms, following them up and treating them in a timely fashion. And by doing this or they've demonstrated that we can reduce the risk of dying from this condition to a great extent.

So I can see how Julietta, for example, would be impressed by the evidence on benefits but have you also looked at the what the potential harm of screening healthy people might be?

Yes indeed that also has been looked at. And the main harm here obviously is what's been recently raised and that is the worry of someone knowing that they have an aneurysm and living with it. And that has been addressed and we looked into this and with reassurance and education that worry usually dissipates quite quickly and patients become much - actually more comfortable with the situation.

Julietta, it's interesting that people listening to this programme, if they're women, they shouldn't expect an invitation to this aortic aneurysm screening programme because it won't include them will it. I mean how are decisions like that made?

Well when you look at the chance of benefit versus the chance of harm you might look at different groups within the population. The obvious difference is men versus women, so even though we have a few men every year who get breast cancer the risk to a man of breast cancer is so low, if you're talking about the general population, that we don't invite men for breast cancer screening. And it's the reverse, if you like, with aortic aneurysm screening, that the risk to women and the chance of benefiting from the screening programme is just not there whereas it is for men.

Ann, it has to be someone like Julietta and her team who are looking at the population level, what's best for most of us but it does all seem rather hard nosed when you're talking about populations, what's your experience of dealing with individuals in the surgery whose cancer, diabetes, whatever, might have been picked up had there been a programme?

I think it can be quite difficult because I think sometimes people feel that if they had been screened, if they had been, for example, younger women with breast cancer, if they had been screened earlier it would have been picked up and the results might have been better. And it's often quite difficult to explain that balance between risk and harm and cost, I mean all those things all come into it and it's very different for the individual than it is for when you're making decisions about a population.

Well you might think that when someone like Hilary Cooling - a doctor specialising in reproductive and sexual health medicine - was invited to attend her first breast screening mammogram on her 51st birthday, she'd have jumped at the chance. But she politely declined. So how did she come to that decision?

I looked at myself, I'm slim - that puts me at low risk of breast cancer - I eat a healthy diet, I don't smoke, I drink minimal amounts of alcohol, I have no known relatives who've had breast cancer, I have breastfed one child which gives a certain amount of protection. And putting those things together I wrote politely and thanked them and told them they could called me again in three years time.

Screening, while having many good points, does actually in a sense change you into a patient, or certainly if you're one of the - I think it's 1 in 20 women over 50 who are called for a mammography will be called back because there's something that needs repeating or further tests and that turns you into a patient. You're worried, you've had - what people call, my patients call - a cancer scare. So I would encourage women to read the leaflet and think about it, to think it through and to think well what if, what if I was called back and also of course to assess their own risks. Being aware of changes in the breast and people who have higher statistical risks there is more good reasons for going for screening. But it must always be choice because people are entitled to their own autonomy. Many women, even well educated, other professional women, even other doctors, doctor colleagues, feel that maybe they don't have a choice when actually they do. And then you can choose next time - three years later you can think about it and say well I'm three years older, I have slightly more risk just because I'm three years older - and at some point I will probably make a decision to go back and take up the invitation.

Dr Hilary Cooling.

So Ann McPherson, you're a GP, do you think people have enough information to make these sort of decisions - I mean we're not all experts in reproductive and sexual health medicine, is there enough information to be able to make those decisions?

I think screening committee's - the cancer screening committee - have done a very good job in giving information. As far as choice is concerned I think assessing risk is very, very difficult. Even if you're a consultant in sexual health medicine or whoever you are and you know you talk to two people with the same sort of knowledge and they'll make different decisions and I think yes that's choice in a way but what is it that's made them to come to those different decisions and often it's you know have they had a relative with the disease, have friends or family gone for the test or do they feel it's their civic duty, which is another thing which has come up as to why some people go for the test.

Julietta, it's not instantly obvious, I would suspect, how a simple blood test or an x-ray could cause serious harm in a screening programme situation, what are the sort of potential harms you look for?

Well we could put harms into really three categories. One is the psychological harm that simply going for a screening test for cancer does make you think about it, does make you a bit anxious, you have to acknowledge that you're at risk and of course if we do call somebody back - and you've heard the figure of 1 in 20 for women coming for breast screening which is correct - that does cause a huge amount of anxiety. So there's the psychological issues. And then there's the physical issues which are not very great with some screening programmes but with mammography, for example, it is a dose of radiation. So we would be concerned about that. And then finally there's the financial costs, the costs to the NHS of providing the service. So those are the three kinds of harm you can have - the psychological, the physical and the financial.

And Ann does that sort of resonate with your experience in surgery that patients come with those sort of issues?

Absolutely and I mean for example if someone's had to go and have further tests - diagnostic tests - some of those can be painful or unpleasant and then some people where they've been negative will feel absolutely relieved and really pleased they've gone through that process and other people will feel rather cross that they've been put through that as what they would see as unnecessary.

It comes to a head in the sort of PSA testing for prostate cancer which is not an official screening programme yet but people do have the choice to have this PSA blood test don't they.

Yes and I think one of the problems is that we need really good tests, we need the tests that really give you a good answer rather than those that are very difficult to interpret and I think that's one of the problems with the PSA test, that it's not actually - not a very good test. And the whole way in which prostate cancer screening might come in may be when they've got a much better test and there won't be so many false positives and false negatives.

Hany, you have to - you and your colleagues and others - have to come to grips - get to grips with the sort of psychological aspects as well do you?

Oh absolutely, I mean it is one of the built in measures we have to take when we invite people to actually have a scan because we have to prepare them for what the scan results will show. And there is a certain way of doing this and it's a multi basically team approach, based on the community, perhaps, support for the individual patients by the GPs and so on and so forth. And at some point these patients or individuals will get to see a clinician or a specialist who would provide them with further support from the psychological point of view to inform them about their condition and its treatment and so on. So that is a very important aspect of a screening programme and certainly needs to be addressed.

Well for a screening programme to be successful it needs enough people to say "yes" to their invitation. But clearly not everyone does; or they do but only when they get round to it. So what is it that motivates most people to go for their cervical screening, for example, and what goes through the minds of women who don't take up the invitation? Dr Jane Walsh is a lecturer in psychology at the National University of Ireland in Galway and she's used a questionnaire study of more than a thousand women to get some answers.

Your idea of whether or not you consider yourself at risk is going to be one of the first things, you know knowledge obviously is a basis, so if you think well no one in my family's ever had it, I don't know what the risk factors are, I probably won't get it, then you're not going to value the behaviour. As well as that if you're asked to attend once every five years well you might say well what's six or seven years, four years, what difference does it really make? So stressing that five years to an extent is a maximum, not a target, might help. The fact as well that it's time consuming, many of these younger women are busy with small children but when you look a little deeper at the reasons that women give many of the reasons given by non-attenders are around the actual procedure itself and fear of that. So they will describe it as unpleasant, uncomfortable, painful in some instances and really it's avoidance of this discomfort can often be one of the reasons that they choose not to go. And many women also cite that a test like this will cause them a certain amount of distress.

Funnily enough even in the surgery yesterday I was asked to see somebody who had not turned up for their cervical smear on a number occasions.

Owen Dempsey is a GP in Huddersfield.

Talking to people at the practice they were quite appalled that this lady didn't want to have a smear done. She was terrified of having a smear, she hated the previous smear that she had because it was so uncomfortable and I think the staff and the patients assume that going for that cervical smear is an absolutely good thing but there seems to be very little awareness of the number of false positives and the uncertainty around which abnormalities actually require treatment and which don't.

One study we did showed that 70% of women did not understand what their abnormal smear result meant. And you could break this down a little further, with half of that 70% simply saying they didn't understand anything about it and the other half believing that this meant that they had cancer.

And it seems that women don't just struggle to understand what an abnormal result means, for many it's not even clear what the screening is for. Jane asked them whether they thought it was to detect cancer, prevent cancer, detect changes in cells in the cervix, or to detect infections.

A third of women said they simply didn't understand the purpose of the smear test and these were women who'd had one. And that was quite a disconcerting finding. One-third of women said they believed that this meant that they had cancer. And of course that's very worrying - that test - the idea of avoidance then becomes a stronger motivator. And the other third of women understood the preventive nature and that a positive cervical smear usually meant the detection of abnormal cells which were early stages but treatable and preventable in terms of cancer.

So what motivates women to take up their cervical screening? Fear seems to be an important drive here - in putting people off, but also in making them take up the offer.

Many of the women who were attend perceive themselves at higher risk, so it would be fair to say that they have a fear of getting cervical cancer but they understand the preventive nature of the test. And so that fear is somewhat allayed by this positive action they're taking. For women who don't attend one of the reasons they cite was being afraid of having the test and I supposed linked to that is what they might find. And so it's possibly because they don't fully understand the positive benefits of doing the test, that their fear is somewhat more irrational perhaps.

Dr Jane Walsh.

So Ann McPherson, you're a GP, but you're also working in the DIPEX site with bowel cancer screening and what patients make of that and what makes them go and what makes them not go, does that report sort of resonate with you and your findings?

Yes it does, certainly to a certain extent. And the reasons that we found out as to why people said yes were often if they had a relative with the disease itself but just with any old cancer, that they had good experience of other screening - I think that's very important and it may be one of the reasons why women have tended to take up the offer of bowel screening more than men because many of them will already have had a lot of other screening which they're very happy with. Convincing information on the leaflet was important, so I think what we actually tell people. Having a friend or family who had actually been for screening already and it was alright. GP involvement - GPs actually suggesting it, explaining more, seemed to be important. Why do they say no? That they felt there was a low perception of risk, they were too busy, they were denying that it could happen to them, fear of unpleasant results - as person said - and with bowel cancer screening sometimes just the whole idea of having to send your faeces off or it's all sort of stuff we don't really like very much. I think the important thing is that they understand it and if they understand it then - and they make a choice that's absolutely up to them and there shouldn't be any coercion. But I think we also need to get rid of any myths that people might have about it.

And Julietta, I understand that we shouldn't really be calling it a cervical smear anymore, even the word can put people off?

Certainly, I don't think it's a very pleasant word but yes we've been converting over the last few years to a new modern technique of still cytology, so often the woman's perception of what's happening to her will feel exactly the same but the test is actually different and it's giving us much more accurate results and we can get them out much faster as well. So the last few smears will be done in this country in the next few months but most places already throughout the UK are on the new techniques, so we don't talk about cervical smears anymore, it's cervical screening.

And the new technique, briefly, is a sort of brush rather than a scrape sort of idea is it?

Yes we use a plastic brush instead of a wooden spatula and instead of smearing the cells from the wooden spatula onto a glass slide the brush with the cells on goes into liquid and the cells then float off the brush into the liquid and we can - so we can spin them down and spread them nicely on a slide in the laboratory rather than it being done in the doctor's clinic.

Well one person who is a big fan of screening - particularly for abdominal aortic aneurysm - is Tony Hoskins.

My mother was killed by a ruptured aortic aneurysm in 1989. There was no warning sensation and her death took about three seconds. So when I was told I had been selected at random from a range of doctors' lists of patients, in the light of my mother's experience, I thought this was a very good idea. And I reported for this scanning exercise. It's completely painless - a jelly is put on your abdomen and a detector is passed over which transfers images of the artery concerned to a television set from which records can be kept. And it turned out that I had got a moderate aneurysm and was told to come back at yearly intervals so that they could keep an eye on it. About a year later he decided that it had enlarged sufficiently to have surgical treatment. And I was fitted up to go into hospital in November to have the operation. Having made such a remarkable recovery I find myself now, only a few months after the aneurysm operation, doing heavy gardening work, going for reasonably lengthy walks on the Downs. I think it is a wonderful idea and I only hope that as many people as possible will take part in it and be restored to health as I have been.

Tony Hoskins.

Hany, Tony's case is a very interesting example, isn't it, here you are, you're taking people - healthy people - off the street, it sounds like a great idea but you have to balance this harm of treating someone against the harm of not treating them I guess.

Well absolutely. If we didn't have an answer to their problem that is relatively safe and will certainly be more beneficial to them than doing nothing we wouldn't have picked them up off the streets and identified their problems. And therefore for a screening programme to be complete you have to offer patients a solution to what you're identify in them. And that solution needs to be as safe as possible, will provide them with a good alternative to doing nothing. Take, for example, the aneurysm sort of problem if we don't treat aneurysms they would grow with time and eventually there is a good chance that they will rupture in certain individuals, not all patients but certainly in some individuals an aneurysm will rupture. Treating a ruptured aneurysm is extremely risky and the chances of someone making a good recovery from a ruptured aneurysm operation are extremely less than from an electively treated aneurysm and that's what you offer patients - we offer them timely intervention and has a relatively low risk of harm to them.

I mean yes presumably it has a lower risk if you do it sort of calmly and electively, rather than when it's ruptured. However, you're not always operating on completely healthy people, these aneurysms often don't exist in isolation, someone like Tony may have other disease in other arteries.

You're absolutely right and one of the advantages of the screening programme is that it gives the surgeon a time - a good period of time - to optimise the health of the individual concerned. For example, we would have a good 18 months period before surgery during which we can improve the heart function, we can improve, for example, the breathing function - ask them to stop smoking if they do - give them medication to treat medical problems that we've not identified before. So that when the operation time arrives they're in the best possible shape for it and that's one of the advantages of this screening programme that have not actually been mentioned in the debate that's been recently raised about the benefits of screening.

And just to give us some details about how it's going to roll out, I mean when can people expect to be invited?

Well people in some parts of the country are already being invited, certainly in [indistinct word] area we are going through a negotiation to roll out the programme throughout the whole region and I think, according to the Department of Health guidelines, the screening for aneurysms in England will hopefully be complete by five years or at the end of five years.

Can I ask you about Gordon Brown's idea of these over 40s checks. They're mainly targeting sort of vascular disease risks, aren't they, blood vessel problems, diabetes, kidney, cholesterol - and presumably, as a vascular surgeon, you'd be in favour of all this?

I would be in favour with caution. I think this will fall under mass screening for a number of conditions, some of which have not actually been addressed individually. And to group all these conditions in one big screening programme I don't think is the right way to go about it. I think we need to assess the benefit of screening for each of these individual problems before we mass screen patients for them. And it will take a lot of work to try and establish whether this is something that would be beneficial or not.

And from a GP angle I'm thinking huge amounts of workload on what evidence.

Yes I think I would absolutely agree that we need much more evidence and know exactly what we need to be doing for each different screening programme and who we should be screening.

It's groups as well because it's a very wide age range and that is extremely difficult to classify and differentiate.

And Julietta, looking to the future, can we expect to be making several visits a year for screening tests, say in 50 years time, as we know more and more about these things, the tests get better - is it just inevitably going to expand and expand?

Well certainly people are looking for new screening tests for different conditions all the time. If we're going to do population screening it's got to be a big problem or it's got to be a very simple test. So it's a question of balance at every - at every single decision point. But I don't think we should ignore the fact that we still need good treatment, there's no point screening for a condition if you can't manage it better or treat it better at the end of the day. And if we could cure cancer then we wouldn't need to screen for it.

Well I'm afraid that's all we've got time for this week. Thanks very much to my guests for coming in: Julietta Patnick, Ann McPherson and Hany Hafez.

Join me next week for Case Notes on damage to your knees.


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