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INSIDE HEALTH

Programme 5.

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TX:Ìý 23.07.13Ìý 2100-2130

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PRESENTER:Ìý MARK PORTER

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PRODUCER:Ìý GERALDINE FITZGERALD

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Porter

In today’s programme:Ìý The NHS blood service relies on the generosity of donors to maintain vital supplies, so the last thing it needs are rumours that is has been flogged off to a group of private equity investors.Ìý We do our bit to put the record straight.

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Diabetes in pregnancy - a growing problem that now affects around one in 20 pregnant women in the UK, with potentially serious consequences for both mother and baby. I meet a team who have turned to an app to help women manage their diabetes.

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And Crohn’s disease - we visit Addenbrooke’s Hospital to answer a listener’s concerns about the outlook for her 12 year old son who has just been diagnosed with this type of common inflammatory bowel disease.

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But first…

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Well more than 650 lives could be saved each year if everyone aged between 40 and 74 went for a free annual health check.

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Public Health England is starting a campaign to make sure more people take up the test for blood pressure, cholesterol and weight.

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Porter

So are the NHS health checks everything they are cracked up to be? According to Public Health England the checks could save at least 650 lives and prevent 1,600 heart attacks and 4000 cases of diabetes every year.

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Inside Health’s resident sceptic Dr Margaret McCartney isn’t convinced.

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McCartney

Well it’s not based on evidence, that’s the bottom line, so what the government is really offering with these health checks is health screening.Ìý And screening is taking people who have no symptoms of disease and offering them tests to then put them in a kind of risk category and then offer them treatments based on that.Ìý So what we’re doing is screening a large section of the population and screening always has problems – there is no such thing as a perfect screening test.Ìý And it’s really important when you’re doing a screening intervention that you look at what the risks are, what the benefits are and what the cost benefit is.

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Porter

Well let’s have a look at the benefits to start with – they’re talking about 650 deaths, 1600 heart attacks, 4,000 cases of diabetes a year – so those are significant one would think.

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McCartney

Well let’s look at the evidence.Ìý I mean where do these figures come from?Ìý I’m really not at all clear.Ìý If we go back and actually look at the evidence, well let’s say what they say and we’ve had a fantastic trial published in the Lancet last year called Addition Cambridge and that was a screening trial, so it looked at groups of people and they were at high risk for diabetes, they divided them into two groups – they looked at one group and they screened them for diabetes, the other group they didn’t.Ìý After 10 years there was no difference in death rates between the two groups.Ìý So looking for diabetes in groups of patients with no symptoms did not improve the death rate from diabetes or from all causes of death.Ìý We’ve also had a Cochrane Review, back last year, looking at the treatment for blood pressure and basically found that mild hypertension, which we currently treat in the bucket load, up to 159 over 99 has not been shown to reduce mortality or morbidity in randomised controlled trials, so there’s that.Ìý And then there was also a Cochrane Review last year and they looked at impact of the health checks in patients over long follow up periods and found no evidence of benefits with them but lots of evidence for putting more people on medications and tablets that they did not benefit from.

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Porter

To be fair the Cochrane Review didn’t exactly reflect current NHS health checks and one of the problems of course is it’s basically one of the first programmes of its type in the world, so it’s unlikely that there’s going to be the sort of quality data that’s going to impress you.Ìý Somebody has to take a leap of faith is what the advocates might say.

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McCartney

Well a leap of faith can only really be done in a randomised control trial, so if people wanted to go ahead and actually do a trial of this I would be absolutely fine with that because I think that would be useful.

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Porter

So it may seem counterintuitive to a lot of listeners but screening for a disease may not actually save lives from that disease but what about the harms that you were talking about – how can – I mean the worst most people say well I’ll go be screened, if it doesn’t do me any good, so what, it’s not going to hurt me.

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McCartney

Yeah, yeah, and I think a lot of people say things like oh I’d rather know than not know and I can understand that but the problem is what’s useful knowledge and what’s not useful knowledge?

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Porter

But how is a chat with your nurse and a blood test for your cholesterol level going to impact badly on your health?

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McCartney

Well supposing you end up, for example, being treated with a cholesterol tablet for the rest of your life without gaining any benefits from it.Ìý You may get no side effects at all, great, but for a lot of people they will have side effects.Ìý And the peril is that we medicate millions of people without giving them any benefit.Ìý And that’s really what I’m concerned about.Ìý If you want to do some tests about your basic health, if you want to give yourself a health check-up, well I would suggest doing quite simple things – ask yourself, do I smoke, how much do I drink, do I do exercise, what’s my waist size – basic things like that, you really don’t need doctors or nurses to be involved in knowing how healthy you are or not.

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Porter

Well joining me on the line now is Professor Kevin Fenton, he’s director of health and wellbeing at Public Health England.Ìý Professor Fenton, it’s been a strange week for public health, on the one hand we reject plain packaging on cigarettes due to a lack of evidence that it helps while on the other we’re committing here probably to - at least to £100 million spending on an unproven screening programme – doesn’t that make sense to you?

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Fenton

Well you know the reality is that we have to make these decisions on a day to day basis with a range of public health interventions, in part because the level of evidence continues to evolve, we need to act now, improve the impact of the programme as we implement and commit to building the evidence as we go along.Ìý Waiting for randomised controlled trials or until we have perfect data before we act could result in inaction for many years and we’re dealing now with very prevalent chronic diseases which we know from data suggests that in England we’re not doing a particularly good job at managing, relative to other Western industrialised countries.

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Porter

My experience from my own surgery where we’ve been doing these checks over the last 18 months or so is that people taking up the invites are among the least likely to benefit, they’re probably among our healthier patients.Ìý The people we really want to see are the high risk groups like the obese, the smokers, the heavy drinkers – are there moves to target higher risk people?

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Fenton

Absolutely and I can think of two really good examples, both in Southwark here in London but also in the Birmingham area where they have really used the health checks as a way of engaging communities with high prevalence or burden of disease to get those communities to both take advantage of the health checks and to have new conversations about their health and wellbeing.

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Porter

But the figure that you’ve quoted of 650 deaths, 1600 heart attacks and 4,000 cases of diabetes a year that could be prevented – those are your – at the moment they’re basically best guestimates, based on the evidence that you have?

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Fenton

No not at all, these are taken from economic modelling studies which were done prior to the establishment of the health check programme and it’s based on the number of people who will be screened annually.Ìý The background prevalence of disease.Ìý The good news is that many of these estimates, now that we’ve been running the programme for the last two years and we now have a real world data, many of these estimates were in fact a lot more conservative with the programme with the knowledge that we have today.Ìý So, for example, in terms of the numbers of premature deaths avoided we believe it’s going to be at the upper range in about 2,000, for example, premature deaths avoided every year.Ìý Similarly the numbers of cases of diabetes which will be uncovered are likely to be higher now that the programme has been running.Ìý So Public Health England will be doing both additional economic modelling on the data that we now have on the programme but we’re also going to be funding new research studies so that we can learn about the best practices in implementation and to learn about ways in which we can tweak the programme becomes even more effective and cost effective moving ahead.

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Porter

You say build the evidence base but where are you actually starting from, given that some of the papers that have been published, the ones that Margaret alluded to there, don’t really show that there’s a lot of benefit to be had from doing this, are there other studies that have convinced you?

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Fenton

Absolutely, so whether it is the importance of looking at blood pressure screening, whether it’s looking at the screening test for chronic kidney disease or the risks for cardiovascular disease we have built the programme based upon the best available evidence as summarised by NICE in terms of good clinical practice and guidance.Ìý What’s different about the health checks programme is that we’re offering all of these investigations as part of one complete visit.Ìý So we know that there’s good evidence to support a number of the individual interventions, what we’re now evaluating is does combining these interventions also help to realise some of the benefits that we would expect.

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Porter

Continuing the evidence theme I’m sure you’re aware there’s been a new study just published on BMJ Open suggesting that plain packaging of cigarettes may actually help encourage people to give up smoking, it’s the first evidence of its type, are there plans to reconsider the plain packaging introducing in light of this new evidence?

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Fenton

Well the government has made it clear that it hasn’t closed the door on a decision but that it’s awaiting additional evidence on the impact of implementation of this policy before making a decision.Ìý So I’m delighted that we now have additional information and we’ll certainly be working with our colleagues in the Department of Health and across government to ensure that this evidence and others of its type are available to those who are making decisions on policies so that they can both reflect upon and ensure that new decisions are made moving forward.

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Porter

Professor Kevin Fenton, thank you very much. And you will find more details on the Public Health England campaign, and NHS Health Checks in England, on the Inside Health page at bbc.co.uk/radio

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Now, an important part of our brief here at Inside Health is to clear up confusion, and - if the debates raging on social media over the last few days have been anything to go by - there has been plenty of confusion about the recent sale of Plasma Resources UK to a US venture capital firm. Put simply, it would appear that many people - including some in the media - think that the National Blood Service has been flogged off, and that altruistic UK donors will be lining the pockets of foreign investors from now on.

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So has it - and will they?Ìý Margaret McCartney.

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McCartney

That didn’t happen, that’s not the case.Ìý If you donate blood in the UK nothing will go to any profit making companies, that’s the important bottom line.Ìý So what had happened was way back in 1998 the UK had to stop using its own plasma, because of the risk of CJD, colloquially known as mad cow disease, so instead of using our own plasma from UK donors we had to purchase that from the US.Ìý So we don’t use our own plasma in the UK, it comes from the US because of the risk of CJD.Ìý So this has been going on for absolutely ages and it’s this company that deals with the plasma and the plasma only from the US, called Plasma Resources UK, that’s the one that has been partially sold to this US private equity firm.

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Porter

And this was a company that the government actually bought to secure the supplies of those plasma and it’s now sold it back, some – a decade later or whatever.

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McCartney

That’s right, that’s right.

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Porter

But this has nothing to do with UK donors or whole blood supply?

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McCartney

No, this was to do with getting plasma from the US to the UK, nothing to do with UK donations.Ìý So if you make a donation of blood – and please do because we’re short – it will make no profit for any private capital venture firm, nothing at all, it will be used very gratefully by people whose life will be saved from it.

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Porter

Margaret McCartney, thank you very much.

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And don’t forget if there’s a health issue that’s confusing you then please do get in touch, you can e-mail me via insidehealth@bbc.co.uk.

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Catharine, a listener in Hampshire, got in touch to find out more about Crohn’s disease - a type of inflammatory bowel disease that affects over a hundred thousand people in the UK.Ìý Symptoms vary but typically include diarrhoea, weight loss, abdominal pain and feeling generally unwell - and the illness is characterised by relapses and remissions - good spells and bad spells.

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Catharine’s concerns centre on her son.

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Catharine

Help our 12 year old son’s been diagnosed with Crohn’s Disease and we’re in a state of shock.Ìý Can you tell us more about it?Ìý Also is there any clinical research on the horizon to give us hope for the future?Ìý Thank you very much.

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Porter

Well to find out Catharine I’ve come to Addenbrooke’s Hospital in Cambridge to meet Jessica Dickinson and her mother Frances.Ìý

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Jessica Dickinson

I was diagnosed with Crohn’s in 2004.Ìý I’d lost a lot of weight because I was always quite a chunky child, we just put it down to losing puppy fat basically, it just got worse and worse and thought no something’s not right – bowel movements they were not normal, as it were.

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Porter

You say not normal – diarrhoea?

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Jessica Dickinson

Diarrhoea and going pretty much straight after a meal, so I wasn’t actually absorbing any nutrients, which is why I then lost so much weight.Ìý I also started being sick as well.

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Porter

And when you’re well I mean do you have essentially a normal life?

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Jessica Dickinson

Yeah, pretty straightforward normal life.Ìý I’ve been to New Zealand twice as well so it doesn’t stop me travelling either.

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Frances Dickinson

My name is Frances and I’m Jessica’s mum.Ìý

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Porter

How did you feel when the doctors told you that your young daughter might have Crohn’s Disease?

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Frances Dickinson

Well I knew something wasn’t right, obviously, but I didn’t know whether it was inflammatory bowel disease but then after seeing how she was it was sort of nice to have a diagnosis and so you were able to find out what it entailed.

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Heuschkel

My name’s Rob Heuschkel, I’m a consultant paediatric gastroenterologist at Addenbrooke’s Hospital.Ìý About a quarter of all patients with Crohn’s Disease present under the age of 18.Ìý And under the age of 18 the majority would present between about 12 and 14.

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Porter

What’s actually happening in Crohn’s Disease?

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Heuschkel

We understand the processes that lead to the ulceration in the gut, and that’s really what drives the symptoms of pain and diarrhoea, that is driven by a combination of factors.Ìý It is clear that the gut floor are the bugs that live in our gut are responsible for driving the immune system to react against some atypical bacteria in your bowel.Ìý That’s likely to happen in genetically predisposed individuals, in about a quarter of patients that we see but in 75% of patients we don’t know what the underlying cause is.

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Porter

But it might for a significant minority that are predisposed to some sort of interaction between the friendly bacteria and the bowel?

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Heuschkel

There are attempts to try and understand which atypical bacteria tend to drive the inflammation.Ìý We’re not clear what the trigger is and without knowing that it’s difficult to tease out whether the change in gut floor is a result of inflammation or is actually driving the inflammation.

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Porter

Crohn’s has been linked to the use of antibiotics – is that mediated through this interaction with the bacteria in the gut do you think?

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Heuschkel

So early use of antibiotics – there is some data out there that suggests changing your gut flora in the very formative early years of your life may predispose you – probably to a number of a conditions.

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Porter

Is this becoming an increasing problem?

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Heuschkel

Yes certainly in Scotland where they’ve got robust data there’s been a doubling of the incidents of Crohn’s Disease over the last couple of decades.

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Porter

When you talk about ulceration of the bowel people might think of one discrete ulcer, like a mouth ulcer, but what does the bowel actually look like?

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Heuschkel

Crohn’s Disease you can have these ulcers anywhere between your mouth and your bottom end, or can be…

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Porter

So you’ve not got one ulcer you could…

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Heuschkel

A series – a series of ulcers.

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Porter

How do you manage the condition?

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Heuschkel

It is a little bit of initial testing and trial and error with the first line drugs but we tend to focus on suppressing your immune response to the driver of the gut flora.Ìý In Crohn’s Disease and particularly in children we do use exclusive enteral nutrition – this is feeding them a special milk based diet which they take exclusively, so there’s no additional food allowed, for six weeks and that we know heals the gut very effectively in Crohn’s Disease.Ìý It’s not a long term solution clearly but it’s a way of inducing that first remission and getting them better.

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Porter

But in terms of drug therapy you’re using drugs that are altering the immune system in some way to dampen down…

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Heuschkel

Most – exactly, so most of these drugs affect the immune system.

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Porter

This is one of the exciting areas as someone who doesn’t work in the field is the new drugs – so-called biological therapies – have they added a lot, are they used in children?

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Heuschkel

They are certainly used in children and I would say in the UK about 20 units look after substantial numbers of children with inflammatory bowel disease.Ìý Between 10-15% of our population are on these – one or other of these biological treatments and they are effective, they are used predominantly in children who would otherwise go forward for surgery.Ìý They are extremely effective in inducing a remission, not quite as effective at maintaining remission but I think with each new biologic we are able to postpone more invasive surgery.Ìý Our aim – this is where the rest of our team comes in – our aim is really to try and normalise the child’s life – to get them back to school, doing sport.

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Jessica Dickinson

The biggest problem for me is not going to the doctors when I should do because I know like for example last year I ended up in Addenbrooke’s for nine weeks purely because I kept going oh no I’m fine, I’m fine, I’m fine – I knew something was wrong but I wouldn’t go to the doctors because I just – I knew it was my Crohn’s and I thought no but then it got to the point where I had to go and I ended up coming in to A&E and so it’s me being the kind of person going – oh no, no I’m fine – when actually I know I’m not and everyone else can see I’m not.

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Benson

My name is Sally Benson and I’m a consultant clinical psychologist at Addenbrooke’s Hospital.Ìý One of the issues that we find comes up is that young people find themselves – are very reluctant to honestly report symptoms to their parents, if, for example, they have bleeding or they’re finding they’re going to the toilet a lot more because they don’t want to disappoint them.Ìý They’d rather hide the symptoms from themselves as well as their parents.Ìý And sometimes the team finds that when the child comes to clinic and they’re with their parents they also therefore misrepresent their symptoms to the team again because they’re actually protecting themselves and the parents from the reality of the disease.

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The consequences of that of course is that that young person is unwell and can become quite unwell without people realising it.Ìý So we work quite hard to identify and the team are very good at picking up when they think children are struggling to report honestly their symptoms.

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Porter

What about the impact of stresses in their life on their physical wellbeing?

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Benson

It does impact and the challenge is to help them recognise when they’re stressed and then how to manage it.Ìý And it’s great when they recognise the triggers, can manage it and literally observe the symptoms dissipate.

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Porter

Rob, what about the long term outlook in terms of being able to control this, what do you tell the parents?

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Heuschkel

I think we have a little bit of a clue, depending on the severity at presentation, how the initial course is going to run.Ìý It is a very individual course that the disease takes and we have no objective markers that tells us how well you’re going to be in 12 months or 24 months or five years down the line.Ìý Most children go into remission within eight to 12 weeks and if they’re – once they’re on a maintenance treatment 70 or 80% will be in a long term remission.

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Porter

But the outlook for the majority is pretty good then with modern therapy?

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Heuschkel

Absolutely.

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Porter

What about that quarter or so who aren’t so lucky, what happens when the drug therapies fail?

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Heuschkel

So if we – if we’ve stepped up our treatment and there is still ongoing symptoms it really depends again on where the inflammation is as to how you will respond.Ìý And there are surgical options that can really transform the life of a child who’s previously not responding to treatment.Ìý So a few children every year go on to have surgery either…

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Porter

That would be to remove part of the bowel?

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Heuschkel

Either to remove a section of bowel that is simply not responding to treatment or has become scarred, causes a blockage or in some occasions – and this is much rarer – to remove the large bowel, the colon, and temporarily fashion a stoma, which is something that you would try to avoid in almost all children but in a small proportion is necessary.

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Porter

And looking forward to the horizon is there anything exciting in terms of some other way of approaching this that might lead to a cure for instance?

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Heuschkel

I think there is lots and lots of research going on about trying to identify a trigger or underlying other predisposing factors.Ìý I think in honesty we don’t have a cure in sight.Ìý The closest that we’re likely to get with the treatments and the support is a lasting long term remission where these ulcers are kept under control by medication.

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Porter

But medication didn’t work that well for Jessica Dickinson, she was one of the unlucky minority who have to resort to surgery.Ìý And had part of her bowel removed to control her symptoms.Ìý Not that it’s stopped her doing what she wants.

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Jessica Dickinson

My career – I went from working with horses, so it’s not stopped me in the physical aspect of doing sports and things like that – I’ve now literally just changed jobs and I’ve become a healthcare assistant.Ìý So it’s not – doesn’t affect me through my career or anything like that.

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Porter

How old are you now?

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Jessica Dickinson

Nearly 21.

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Porter

So it’s been 10 years.Ìý What would you say to the family of our listener who’s concerned that they’re right at the beginning, what would you say to somebody like that about the future?

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Jessica Dickinson

Try and join a support group, so that there’s other parents and other children around, so I would say if you can try and speak to somebody about it.

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Porter

A problem shared can indeed be a problem halved. Jessica Dickinson speaking to me at Addenbrooke’s hospital - and there are some useful links for support groups on our website if you are looking for more information, or someone to talk to.

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We started the programme talking about screening for hidden problems like diabetes, and we are going to finish on the same note. Only this time it is screening pregnant women for gestational diabetes - a type that typically develops in women during the latter half of pregnancy.

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Specialists have seen a significant rise in the number of pregnant women developing the condition over the last 20 years.Ìý But why?

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To find out I went to see Dr Lucy Mackillop, who’s Consultant in Maternal Medicine at the John Radcliffe Hospital in Oxford.

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Mackillop

It’s probably an evolutionary thing actually.Ìý When we had less food about our species developed to nurture the foetus, to some extent at the expense of the mother, and that meant that when the baby was born it was more likely to survive.Ìý But nowadays what we find is that we have too much food and too much carbohydrate in particular and these responses are overwhelmed and it renders the woman diabetic.

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Porter

And is it any different from conventional diabetes?

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Mackillop

Not in terms of treatment and not in terms of the importance of treatment, it is too much sugar in the blood effectively. But we do know that it has adverse effects for the mother and the baby and therefore we need to treat it.

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Porter

And how is baby affected?

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Mackillop

So the baby can grow very big, it can have short term consequences, for example, the baby could get stuck when it’s trying to get out but we also know that there is now evidence that a baby who is grown in a too sugary environment may have long term effects such that it might have diabetes and cardiovascular disease in later life.Ìý So by treating the mum we improve the way the baby’s metabolism is grown.

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Porter

Are there any implications for the mother?

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Mackillop

Yes I think there are several implications.Ìý Firstly, if you have diabetes you’re more likely to have problems with infections around the time in pregnancy and in particular delivery and also there is problems related to diabetes in later life.

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Porter

Would the woman herself know that she has a problem?

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Mackillop

No, so it’s something that is not – you very rarely get any symptoms unless you have very severe diabetes in which case you will have the same symptoms of drinking too much and passing urine a lot.Ìý But most people don’t have any symptoms at all and so we are screening women at around 28 weeks gestation and almost all of them will have no symptoms at all.

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Porter

So this is a routine test that’s done on all pregnant women and then if they fail that basic test they then come and see you.Ìý And what sort of test do you do to confirm the diagnosis?

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Mackillop

Yes, so it’s not a – it’s not done on all women, it’s done on women who have risk factors and there are sort of five risk factors – if they’ve had a previous big baby over 4.5 kilos; if they’ve got a family history in a first degree relative of Type 2 diabetes; if they’ve had previous gestational diabetes; if they’re from non-white background and if they have a body mass index over 30.

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Porter

And presumably the aim is to control the sugar levels, to normalise their sugar levels as much as possible, both for their sake and the sake of their developing baby?

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Mackillop

Absolutely.Ìý

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Porter

And how do you monitor that?

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Mackillop

It’s very labour intensive for the women, they have to have – they have to do their blood glucoses six times a day, every day.Ìý What we’ve done previously is that they then write all their readings down and we see them in clinic every two weeks and then make a decision based on that.

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Porter

But now?

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Mackillop

But now we’ve just started to trial a new device.

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Tarassenko

My name is Professor LionelÌýTarassenko, I’m a professor of electrical engineering here in the University of Oxford.Ìý What I have in front of me is my own phone, which has the GDM app, as you can see, I press to go on to the app and then gives me a menu of things that I can do.

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Porter

Well let’s assume you’re going to check your blood sugar now, how would you do that?

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Tarassenko

So when you check your blood sugar you get your phone out and you also get your blood sugar meter, your blood glucose meter with you.Ìý It communicates from the blood glucose meter via Bluetooth.Ìý So you do your blood sugar reading as you do normally, so a drop of blood on the little test strip, you see the reading on the meter and simultaneously it ends up on the phone.

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Porter

Right.Ìý So what happens, once you’ve got this reading, so say my blood sugar is 5.2, I’ve done that, it gets sent into the phone, how does that end up with the midwife or with the doctor that’s looking after me?

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Tarassenko

So the phone transmits the information in real time immediately, so it arrives at the website, which is a secure website.Ìý For myself, if I was the person who had diabetes then I have access to all of my readings, when the midwife logs on and they can review, they can see the women who may need to have some advice given to – the women who may have to have their insulin dose increased automatically because this is highlighted by the software.

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Mackillop

So instead of women having to come up every week or every two weeks we’re actually reviewing their blood glucoses on a nearly daily basis and making adjustments accordingly.Ìý It appears that women feel more confident about managing their diabetes, they feel more involved and they like the fact that they’ve got this constant review situation and that we’re able to text them and phone them and say you’re doing a really good job or you need to increase your insulin etc. etc.

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Porter

So one would hope that it is more convenient for them, it saves them coming up here if they don’t need to but one would hope that it would also result in better control but you’ve yet to prove that?

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Mackillop

We’ve yet to prove that, so we’ve literally done it on a pilot of 50 women and so far we’ve got some – we’ve proved that it works and the women feel confident about using it.

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Porter

What happens to the woman and baby once she’s delivered, in terms of the diabetes?

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Mackillop
Most commonly it all melts away, literally within 12 hours of delivery.Ìý And we just continue to check their blood glucoses for a 24 hour period and if we see that things are looking normal we just stop all medications.Ìý And then they have a test at six weeks to prove that the diabetes has gone away.

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Porter

Dr Lucy Mackillop talking to me at the John Radcliffe in Oxford.

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Just time to tell you about next week when, among other things, we will we looking at how research is shared - who decides what gets published, why do some papers get so much more publicity than others, and what happens when the results don’t come out quite as planned?

ENDS