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Self-Harm, Insulin Pumps, Night Terrors, Penile Cancer

Dr Mark Porter investigates why three quarters of people with diabetes who are likely to benefit from an insulin pump are not on one. And how to deal with children's night terrors.

Dr Mark Porter discovers that three quarters of people with diabetes who are likely to benefit from an insulin pump are not on one. He talks about the cancer that no one talks about - cancer of the penis. And he learns why you shouldn't wake your child during a night terror. GP and regular contributor Margaret McCartney investigates the growing incidence of self harming amongst the young as a new report on it is published.

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28 minutes

Programme Transcript - Inside Health

Downloaded from www.bbc.co.uk/radio4

THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.  BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE BBC CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

 

 

INSIDE HEALTH

 

TX:  23.10.12  2100-2130

 

PRESENTER:  MARK PORTER

 

PRODUCER:  ERIKA WRIGHT

 

 

Porter

Hello and welcome to Inside Health.  In today's programme:  Diabetes and an Inside Health investigation into the use of insulin pumps - widely regarded as the best option for children and adults whose diabetes is difficult to manage.

 

Clip

At first I didn't like the idea because to me it seemed a bit like being an android having an electronic thing plugged into you the whole time and you have to keep it on at night and all that sort of thing but I'm a barrister and I find that when I go into court hearings my blood sugar tends to go up and if I don't treat it I then feel very, very sleepy and a bit sick but because of the pump I feel fine in hearings and I've never had any hypos in a hearing, I feel that the pump has allowed me to perform as a barrister in a way that I wouldn't have been able to at all if I was still relying just on injections, so that's been fantastic.

 

Porter

So, if insulin pumps really are that good, why are so few people using them in the UK?

 

We talk about the cancer that no one likes to talk about - cancer of the penis. It may be rare, but it is also surprisingly easy to miss.

 

And night terrors - if you have young children - or grandchildren - then don't miss our interview with a leading expert on how to manage this common source of parental angst.

 

But first - a new report into the growing problem of self-harm. Commissioned in partnership with the charity Young Minds, the report is based on a survey of two and a half thousand parents, teachers, GPs and young people and the findings don't make comfortable reading. Put simply - those who are self-harming don't know who to turn to for help, and, even if they do seek advice, most parents, doctors and teachers admit to being unsure how to help them. Inside Health's Dr Margaret McCartney has been looking at the new report.

 

Margaret, first of all, what sort of mistakes do you think we make - I mean how should we be handling these young people?

 

McCartney

Yeah I mean it's so difficult because I think as a young person even going to ask for help from a GP can be quite a difficult thing to do.  I think there are awful feelings of shame often attached to young people who are in emotional distress, maybe feel that they're weak in some way and of course they're not - psychological distress or mental illness is not a sign of weakness, it's simply something that needs sorting out properly, something that needs diagnosed and treated.  And I think GPs will want to help and should want to help with this and I think that in many ways perhaps doctors saying we don't know what to do or we don't know enough of what to do is I think the fundamental problem - for me anyway - is the lack of reasonable referral times to specialist services such as for psychological help for psycho-social help, it often takes months and months and months to get some proper help within secondary care, which is not their fault, it's because they're grossly under-resourced and have been for years.  And yet we've had lots of reports from the Royal College of Psychiatrists, for example, highlighting the lack of investment within these kind of services, we've known about this for a long time but awfully and tragically we don't seem to be doing much about it.

 

Porter

One of the issues that arises often, I've seen this happen in A&E departments, casualty departments, or in my own GP's surgery, if somebody comes in having self-harmed for the 30th or 40th time, often, and they get quite a - elicit quite an angry response from the medical staff who say for heaven's sake pull yourself together stop doing this.

 

McCartney

I mean I wonder sometimes if the anger perhaps that some people - some treating professionals might feel is in part their feeling of their own impotence, unable to help properly and what they can do constructively to help because very often the self-harm is not just something that people are doing randomly, it's because they're very distressed, it's because something is not right with them.  And to actually try and fix that or try and help to solve that and make that more liveable with is such a difficult long hard process for everyone and somehow treating someone acutely all the time can feel very, very frustrating because of course for the doctor it can feel very much as though we're failing, we're not doing - we're not treating this person correctly.  And I wouldn't want any young person to be put off seeing their GP because of this survey - I mean it wasn't an academic paper.  But I certainly think if you ask GPs - and there's other research out there - that will say that we don't cater very well for young people who have psychological or emotional distress.

 

Porter

Margaret McCartney, thank you very much. And there is a link to the Talking Self Harm report on our website - go to bbc.co.uk/radio4 and click on I for Inside Health.

 

They have been around for years, we know they work, but we are still not using them as often as we should - insulin pumps.  They are electronic devices that deliver a continuous supply of the blood sugar lowering hormone insulin and they are the latest advance in helping people with Type 1 Diabetes whose sugar levels are hard to stabilise using conventional injections. Around three million people in the UK have diabetes - one in 10 of whom has the Type I form that requires treatment with insulin.

 

The use of pumps was first endorsed in 2003 by the National Institute for Health and Clinical Excellence - NICE -  yet nine years later most of the children and adults in the UK likely to benefit from a pump still haven't been offered one. 

 

John Pickup is Professor of Diabetes and Metabolism at King's College, London.

 

Pickup

In some countries like the USA about 35 or 40% of people with Type I Diabetes use an insulin pump.  In mainland Europe it's about 20 or 30%.  In the UK 5% or even a bit less I'm afraid.  And I think the UK has some way to go.  If you look at the proportion of patients who probably would benefit clinically from an insulin pump it would be about 20% many doctors would agree.

 

Porter

On your figures it would suggest that in the UK only around perhaps one in four people who might benefit from a pump are actually getting one?

 

Pickup

I think that's right and there's a debate about the reasons for that.  One of the issues that we have in the UK I think is that there's a low uptake of many technologies and many treatments which are used much more frequently in the rest of the world.  So not only pumps but cataract operations, pacemakers - they're all pretty low in the UK.  So there's a general problem there about the introduction of new treatments.  Then on top of that I think that insulin pump therapy has failed to engage with diabetes specialist doctors in the same way that it has in many other countries throughout the world, partly it's a matter of convincing doctors about the value of pumps and the appropriate point to use them and I think there's been a confusion about that over the years.

 

Porter

What is it about the pumps that doc tors find confusing?

 

Pickup

There's been a lack of a clear pathway for getting patients on the pumps, say regional centres where a doctor knows he can send a patient who needs an insulin pump - so that's one side of the problem.  Another thing I think is that doctors are confused about the clinical indications for insulin pump therapy - some doctors think that insulin pumps are being advocated for all patients with Type I Diabetes but that is clearly not the case, it is specifically for the patient, at the moment anyway, who's having problems with their best modern therapy.  And the problems that insulin pumps are best for are patients who have a lot of problems with low blood glucose levels, hypoglycaemia, and patients who have problems in getting their blood glucose levels down for one reason or another.

 

Porter

So it's about control?

 

Pickup

It's about control - the brain feeds on glucose alone, so when the glucose falls below a threshold level the brain doesn't like it and we start to act in a confused way, we can't think properly and it's very unpleasant for patients.  And ultimately when the blood glucose drops too low they can collapse, they can go into a hypoglycaemic coma, low blood glucose coma.  And the idea of insulin pump therapy is that it mimics the way people who don't have diabetes deliver their insulin which is not just at one rate but a combination of a slow so-called basal rate throughout the 24 hours, the kind of background supply with boosts at mealtimes.

 

Porter

Describe what a typical pump looks like these days and how it works.

 

Pickup

An insulin pump is about the same size I suppose as a mobile phone, it contains a motor inside it which drives the plunger of a special syringe full of insulin and slowly pushes that insulin out of a fine tube - the end of the tube being put underneath the skin. 

 

Hirsh

It's basically something that looks like a pager but has effectively a cartridge of insulin and in fact people often say to me politely and in puzzlement why am I still carrying a pager around.

 

Porter

Georgina Hirsh has been using an insulin pump since the beginning of last year.

 

Hirsh

The real benefits are that it's just so much easier to manage your diabetes and when I say managing your diabetes that means to stop your blood sugar going so high that it's damaging your organs and you're feeling so tired and sick and to stop it going so low that you're shaking, not thinking properly or fainting.  You can tell the electronic mechanism of the pump lots of information which you can't vary with injections, so most people vary the type - the amount of insulin they need at different times of day and night.  If I have carbohydrate for breakfast I need a different amount of insulin than I do having food in the afternoon.  So I've put all of that data in my pump, so when I have food all I need to tell the pump now is how many grams of carbohydrate I'm eating and it works out the rest for me, which is fantastic.  And also if I do exercise your insulin sensitivity increases with exercise so when I was on injections I used to often have a hypo and have to stop exercise and have something sweet.  And also at the beginning I found it absolutely terrifying having to stick a syringe into myself, so I quite often used to try and then my hand would stop itself just before it went in, whereas with the pump I can just reduce my background insulin and also you recover more quickly from your hypos, which is fantastic.

 

Pickup

With the insulin pump patients are taught how to give just the right amount of insulin according to the meal type and meal quantity that they're eating.

 

Porter

At what age can you start using a pump?

 

Pickup

You can start using a pump at any age and they're just as suitable in children as they are in adults.  And in fact children of five, six, seven can easily manage their pump, with the help of their parent of course.  Many doctors would say they're particularly suitable for some children, you know because of the erratic patterns of eating that young children have, particular toddlers, the differences in exercise throughout the day, the difficulty of giving insulin injections at school.  This can often make life quite difficult for the diabetic child and the parents and the insulin pump helps to get round this in many cases.

 

Porter

You've not mentioned the dreaded cost because this technology presumably is not that cheap.

 

Pickup

No it isn't and pumps are about £2,500 each and then there are additional costs for the supplies - the pump syringes and batteries and so on - and then the cost of running an insulin pump clinic and it all has to be added together.  But NICE has looked very carefully at the cost effectiveness of insulin pump therapy and factored in not only the cost of the insulin pump and the service but the benefit you get out of it, the savings you get from improved diabetes control in the long term.  If you improve your diabetes control then you improve the risk of getting these serious complications, many of which are really costly to the health service - blindness, for example, due to diabetes is the commonest cause of blindness in the Western world for people under the age of 65.

 

Porter

And do we have a good evidence base to show that using pumps in the group who most benefit from them has that sort of advantage?

 

Pickup

We have now a very good evidence base that used in appropriate patients insulin pump therapy really can improve control and can reduce these hypoglycaemic episodes, low blood glucose episodes, in fact you can reduce on average serious hypoglycaemia by about 75% by switching to an insulin pump.

 

Porter

Professor John Pickup. That latest NICE guidance on using pumps in Type 1 Diabetes is on our website - go to bbc.co.uk/radio4 and follow the links to Inside Health. In a nutshell - pumps are generally only considered in people who struggle to control their sugar levels despite using the best conventional insulin regimes. Something to discuss with your specialist if that sounds like you.

 

We've had an e-mail from Jacquie asking for advice about managing her four year old daughter's night terrors. She says:

 

Read

"They start within an hour of her dropping off and she screams and shouts and is inconsolable - I just can't comfort her. They have been going on for 18 months and I have seen our GP twice who has been reassuring but simply said she will grow out of it. My daughter seems blissfully unaware of the problem and is keen to start sleepovers at friends and get some bunk beds, but I am scared she will hurt herself"

 

Well to find out more I went to see one of the UK's leading experts on the problem - Dr Paul Gringras runs the Paediatric Sleep Unit at the Evelina Children's Hospital at St Thomas's in London.

 

Gringras

The interesting thing about night terrors is they're one of those things that's so common that it's probably debatable if it's an actual disorder or whether it's just a normal part of healthy sleep in young children.  So about one in 20 children of this age will experience night terrors or rather the parents will experience it because the kids never remember it, they wake up in the morning and mum says wow that was a busy night, do you know what you were doing - and the child is completely bemused by it and that's one of the issues.

 

Porter

And by night terrors we mean what - what would the parents notice?

 

Gringras

Yeah, so it's a whole spectrum but the general sort of more typical thing is usually in the first third of the night - so parents can often set their clock, they say well we put them down, falls asleep by about eight o'clock and then always an hour later - and often the child will like sit bolt upright, look frightened, eyes might be dilated and so wide as if they're scared and quite sweaty.  Usually can look frightened but not be consolable - and this is one of the important things that is different from nightmare where your child might want a hug and you can explain what's going on, often the child won't even recognise mum and dad, so mum will go and try give a hug and the child will even push the parents away, which is doubly distressing for the parents because it's like well what can we do to help them.  So that's characteristic.  Sometimes children will get even more panicky, scream, get out of bed, even run as if being chased by something imaginary.

 

Porter

So in a nightmare the child wakes up immediately, has a realisation that this was a nasty dream, has a hug with mum and everything's fine, what's different about a night terror then, what do we think is actually happening?

 

Gringras

What we think's happening is that night terrors are coming out of a different stage of sleep, so we basically have two different blocks of sleep that cycle throughout the night.  One block is REM sleep, rapid eye movement sleep, and that's when we have dreams and nightmares - that's usually in the last third of the night.  But in the first third of the night we have a lot of what's called deep sleep or slow wave sleep, they often have this quite bumpy transition from sleep to little periods of wake and they can get stuck in this in between state where they're not fully orientated but they may be able to talk or appear sweaty.  So in fact if we ever do sleep studies, which we usually don't for something as common as this, we actually find that the children are often still asleep during the whole terror itself.

 

Porter

So practically what can mum and dad - if it's that common, the daughter's waking up, what should mum do when she goes in?

 

Gringras

Okay, I mean there was a mention of the mum having tried to wake her up beforehand and that's quite important because it's probably in about 50% of the time it's quite a good little treatment.  So what I would suggest, but people often sort of do it wrong, is if you have someone that's having a night terror regularly and let's say it's about an hour or two hours after putting them to bed about 15 minutes or 20 minutes after putting them to bed, so not trying to guess the time of the terror, you just pop in, wake up the child to the extent of saying come on, may be, let's go to the toilet and that can often change sleep architecture just enough so that that night terror that happens during the first third of the night doesn't happen.  So it's worth trying but as I say it works in about half of cases and in about half the cases it doesn't.  Okay there's lots of basics, so we think that if you have disrupted sleep routines, so if you have a bad night and things haven't gone according to plan and it's a bit later or you've been tired the day before you're more likely to then go into deep sleep and have these sort of bumpy periods.  So that's another sort of basic thing.  Quite important to mention - and I feel quite strongly - that there isn't any evidence that these are related to children who are maybe having psychiatric worries or bullying or stuff like that during the day.  We're talking one in 20 children so I don't think it's helpful for parents to sort of go investigating and interrogating and worrying about what's happening during the day when the children don't even remember this happening at all.  So these are common things.  Most children are going to grow out of this, so if we take the one in 20 children that are having this between the age of, let's say, four and eight by the time they're 16 maybe only 1% - one in a hundred - will still be having them.  So time is on our side, these tend to get better with nothing.

 

Porter

And they're not harmful at all to the child?

 

Gringras

They are not harmful at all to the child.  Sometimes we get people telling us that the child is a bit more tired during the daytime and what I would say is that's not usually a characteristic, we don't recommend trying to get children fully awake.  It will stop the night terror but it will also interrupt their sleep and they might have another one when they fall back to sleep.  So the more general advice is to try and if you can keep the child safe, redirect them towards their bed gently if they've got out of bed and then just let them fall back to sleep.  So you don't get into any of the patterns where the child wakes up, you're having a chat and they get used to seeing you because then you've made another rod for your back - you've got a child that needs to have a chat in the middle of the night.  So the very best thing you can do is to keep them safe, try not to interact, try not to wake them up fully and let them go back to bed.

 

Porter

Talking of safety, mum mentions in her letter here that she's about to get some - well wants to get some bunk beds.

 

Gringras

Yeah bunk beds, I can understand that there's probably peer pressure for bunk beds, bunk beds tend to be quite popular, you've obviously got further to fall.  Now in fact children during night terrors often don't fall, they're very actually good and they get up and down stairs, however, safety has to be paramount and I would suggest the bunk bed is something to keep in reserve for the child to look forward to at an age when it's likely they're going to be growing out of the night terrors anyway. 

 

Porter

This woman's been to see her GP a couple of times who's reassured her but are there ever situations that GPs refer on to clinics like yours?

 

Gringras

Absolutely correct that she's been to see the GP because these are common things.  Now just occasionally there are features in the night terror that don't sound typical and at that stage I think it's very reasonable to think about referral to either a paediatrician or a specialist paediatric sleep unit.  One of the features that would be unusual would be if instead of having maybe between one and three night terrors a night there was a parent saying that my child is having sort of 10 or lots and lots through the night and also not occurring in the first third of the night - the typical time - but occurring right through the night.  So that would be unusual if that was persistent and so that level of severity is something that I would be interested in saying well is there something triggering these, shall we just have a further look.  I think the other time that we tend to see children is when we've given them the advice that by about the age of eight most children have grown out of it and then the young person is then 12 or 13 and they're still happening and at that stage I think it is worth seeing them because the impact on being able to go camping, sleepovers is huge, so it's really starting to affect the young person.  And it's atypical because it's persisting and we're happy to see children then.  On rare occasions we do talk about the use of medication for that group.  There are no medicines that cure night terrors at all but there are medicines that alter sleep architecture, so the depth of how we sleep and so they can improve the symptoms which might be enough for a one week camp over period when a child feels a bit more confident and we tend not to prescribe them long term but just for events like that.

 

Porter

And what sort of drugs are we talking about?

 

Gringras

They're the same group of drugs as valium and diazepam, so they're the benzodiazepines that alter the depth of how we sleep - sleep architecture - a little bit, that's how they work but they don't give us a better night's sleep.  Personally I don't think for younger children when we know the natural history is that they're just going to get better from these, I think it's better to avoid the drugs, they all have potential side effects.

 

Porter

Dr Paul Gringras.  And you'll find more information on how to manage night terrors on the Inside Health website at bbc.co.uk/radio4.

 

Healthtalkonline is a charitable website that allows people with a wide range of conditions to see, hear and read the experiences of others in similar situations to themselves. The latest addition to the site - launched this week - is a section on cancer of the penis. It's a rare condition, and one that people rarely think about - as actor John Edwards discovered.

 

Edwards

In 1997 I went to the doctor with a lump in my groin and I went to see a consultant surgeon who did a biopsy and they then said it was cancerous.  And I said - well what sort of cancer is it.  And they said - well we don't know but we think it's probably secondary cancer.  So then it took several months to actually get to the point of being diagnosed with penile cancer.

 

Minhas

Penile cancer is almost what I would say is the forgotten male cancer. 

 

Porter

Mr Suks Minhas, consultant urologist at University College Hospital, has a special interest in the condition.

 

Minhas

And there are about 400 cases per year in the United Kingdom, although in some parts of the world it's actually the most common male cancer.  We don't really know very much about it and it's only in the last 10 years or so that we're beginning to learn a little bit more about the disease.  We do know that men who've been uncircumcised, men who have a history of viral warts or genital warts and smokers seem to be more prone to having the disease but again this is all based upon very much old data, it must be more prevalent than what we actually think it is.

 

Edwards

I had this massive explosion in my groin, which was secondary cancer, but my penis, which was the primary source and the danger, was of slight discolouration on the gland and you couldn't see it until I'd had part of my foreskin removed.  I always remember it was a fact of my life that I couldn't pull back my foreskin completely and I just thought oh that was just a characteristic that I lived with.  So it was difficult to be completely clean and I didn't realise what an area of danger it was for me.

 

Minhas

Normally it's something that they see from a small spectrum of very small dots to something that is quite large, in other words a nasty looking tumour and can present with lymph node enlargement as well, which is the way that this cancer spreads.  And one of the other ways it presents is that of men who have something called a phimosis or scarring of the foreskin, they can't retract it back and they can't see and through no fault of their own they don't realise they have something there which needs obviously urgent attention.

 

Edwards

Penile cancer is still a difficult one for people, even nurses and doctors I find.  Often I've said well what are we going to call it today.  People refer to it your member, your private part, your this that and the other and most men, if you tell them about being treated for penile cancer, immediately grab their penises to protect it.  [Ha, ha]  I mean that's why I still think that cancer, especially penile cancer, is still a taboo because if you hear what people present with apparently people actually - their first experience of treatment for penile cancer is when they turn up at Accident and Emergency, which must mean an extreme set of symptoms.

 

Branni

My name is Peter Branni [phon.], senior lecturer in social psychology at Leeds Metropolitan University.  For a lot of people penile cancer is a very sensitive area of the body and the impact on their sexual and urinary function is also something very personal and some people wouldn't really talk to others about this and they might tell their friends and family, immediate friends and immediate family, and say I don't want this to go further and we're really lucky that we can learn from these people.  There's one chap who actually used two parties - one with family and one with colleagues - to actually talk about his condition and to tell them all about what was happening with him, so that they would be aware of that he would be having treatment and how he would be dealing with that afterwards.

 

Minhas

We used to amputate some of the penis or occasionally half the penis.  We now, both here and at St Georges, have probably, I would say, revolutionised the management to a degree by performing conservative surgery, so we now know that we can remove small areas of the penis, just like they do in breast cancer now, and reconstruct the penis.  And we've recently published some results in the literature - medical literature - reporting long term follow ups.  So it does seem to be safe to do conservative surgery even with a few millimetres of tumour clearance.  But the problem is we need longer term results in order to differentiate whether or not what we're doing actually is improving quality of life but clearly from the cosmetic point of view we can achieve good results.

 

Edwards

I did find the actual prospect of it quite scary.  What happens is the tumour is removed and then I had a skin graft and I was warned that the skin graft might not take and you go through the operation and you wake up and rather than it's like show time, now we're going to have a look, you have to wait a week before you even see it because it's all wrapped up, you don't know exactly what's gone on until a week later when the first time the dressing came off.  And when that happened it was like seeing a piece of sculpture being made or when you see a pot made, it's not finished off yet and I could see this shape but there was all this stuff all over it, like stitches and bits falling off and cavities and everything but I could see this shape of like a new penis and I thought it was really wonderful.  But then I still didn't know whether it was going to - in the long term - whether it was going to be alright but slowly but surely it is.  So my consultant said - before the operation - oh I sort of jokingly said - oh you're going to give me a new penis - and he said - yes well I think we can.

 

Porter

John Edwards. The new penile cancer section of the  Healthtalkonline website is on the Inside Health page of bbc.co.uk/radio4.

 

This is the last programme in the current series of Inside Health. All in the Mind returns next week when Claudia Hammond will be asking new minister Norman Lamb about how he intends to overcome the challenges of improving mental health care services in the current economic climate.

 

I will be back with another series of Inside Health in the New Year. Until then goodbye.

 

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