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NHS reforms, epilepsy and pregnancy, thermometers

Duration:
28 minutes
First broadcast:
Tuesday 05 March 2013

Dr Mark Porter questions Lord Howe, Minister for Health, as the government announces a U-turn to the NHS reforms following widespread concern that they would lead to privatisation by the back door, and the end of the NHS as we know it.

Why women with epilepsy need to take extra care with their contraception, and the importance of managing their medication when they do get pregnant.

And what sort of thermometer should you use when monitoring your child's temperature?

  • Programme Transcript - Inside Health

    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:  05.03.13  2100-2130

     

    PRESENTER:  MARK PORTER

     

    PRODUCER:  ERIKA WRIGHT

     

     

    Porter

    Coming up today:  Seizures and the Pill - why women with epilepsy need to take extra care when choosing contraception, not least because unplanned pregnancy can be a worrying time for both mother and baby.

     

    Clip

    When you realise you've had a fit and the way I realise I've had one is by biting my tongue, so I wake up with a sore tongue and obviously the first time it happens you go into panic mode thinking oh god has this hurt the baby.

     

    Porter

    And feverish children - what sort of thermometer should you be using to monitor your child's temperature?  Margaret McCartney investigates.

     

    But first, reforms to the NHS and another U turn by the government in the last 24 hours, this time in response to widespread concern that the reforms would lead to privatisation by the back door and the end of the NHS as we know it.

     

    The debate spread through the media over the last week as more and more doctors expressed their concerns in public. At first the Department of Health issued reassurances, but it has just announced that it is reviewing the regulations. And these latest changes are happening just a few weeks before GPs are due to take over around 80% of the NHS budget and consider commissioning care from almost any willing provider; that may be the local hospital - or it may be a private company looking to compete with existing NHS services.

     

     

    Lord Howe, Minister for Health, is on the line from Whitehall and I am joined in the studio by Martin McKee, Professor of Public Health at the London School of Hygiene and Tropical Medicine - and one of the doctors who has been concerned about the impact of the reforms.  Before we ask Lord Howe to explain what has changed - Professor McKee could you outline your concerns with the proposals as they were?

     

    McKee

    My concerns are primarily the risk of fragmentation of services.  We have an ageing population, older people have multiple conditions, they're on different types of treatment and they need someone who can have an overview of all of their treatment.  There is a real danger that these regulations will fragment the care that they receive.  My second concern relates to the privatisation by stealth.  Not the privatisation per se but it is the stealthy nature of it because we have had reassurances from the very beginning that this was not meant to lead to the privatisation of healthcare, we feel that there is a real danger that that is what will happen as a result of services being stripped out.

     

    Porter

    Lord Howe, does your announcement today suggest that you've been listening to concerns like Martin McKee's?

     

    Howe

    I hope he will agree that we have done that and could I just, first of all, thank him for the points that he's raised because I think they do reflect concerns that have been raised more widely about these regulations and as soon as I was aware of them I was quite clear we had to take some pretty decisive action.  So what we've announced today is that we're withdrawing the regulations that we laid because of the anxiety about the wording and we'll lay some reworded regulations in their place, which hopefully will address a lot of these concerns.  It is an issue around the wording because I was quite clear in the light of legal advice and all the explanatory material that we've published that the policy that was agreed last year when we passed the act the policy hasn't changed, there is no desire to change it, there is no desire, for example, to introduce privatisation of healthcare by stealth or indeed overtly.  Indeed if you think back to our debates on the bill we inserted a provision that prevents - makes it illegal - for the Secretary of State or anyone else to prefer the independent sector over the NHS or indeed vice versa.  So I think that's the first point to make that the policy hasn't changed.

     

    Now this issue about fragmentation - absolutely spot on and it's one that we have indeed tried to address in the Health and Social Care Act, it's peppered with duties about integration of care and the need to ensure that care is integrated.  The last thing anyone wants to see is a service that is fragmented and sees the patient suffering disjointed care.  So I'm very, very attune to that concern and I can tell you that in the redrafted regulations I'm going to make sure that we put in some further references to the need to integrate care and not to fragment it.

     

    Porter

    Lord Howe, can I just stop you there because I'd like to just concentrate on this confusion.  I mean the impression that a lot of certainly doctors, colleagues of mine, that have spoken to me was that this was very confusing, they didn't really understand what was going on but the implication was that a lot of the services that are involved in the NHS were going to have to be put out to tender and that was how the privatisation was going to occur.  I mean if the terminology was confusing I mean why - who was responsible for that confusing terminology, was it there on purpose or was it an accident?

     

    Howe

    I think it's fair to say it was an accident.  The trouble was that the wording that came out in the regulations, which was expressed inevitably in legalise, has I'm afraid caused anxiety and having re-read those regulations I have to say I can understand that;  the meaning of the words isn't as it appears and so we're going to try and solve that.

     

    Porter

    Professor McKee does this make you sleep any easier?

     

    McKee

    Well not at all, I'm even more confused now because it sounds as if we're going back to the regulations that were brought in by the previous government and if that is the case then I'm not at clear why we needed a 300 page bill to make this possible.

     

    Porter

    Whatever the wording in this bill the fact is that the private sector and large corporations, many of them, will have a chance to bid for large NHS contracts, does it bother you, Professor McKee, that big firms will be coming in - the private sector will be coming into the NHS?  I mean I can understand why healthcare professionals are upset, I mean that's our employer, maybe jobs will be going, but is it going to affect patients?

     

    McKee

    I have absolutely no ideological problem with the private sector providing healthcare; I think that's important to state at the outset.  What I am concerned about is the way in which the very large corporations will come in and we know what happens elsewhere, we look at defence procurement, another area where we have considerable concerns.  I would be much more reassured if there were provisions in the legislation to limit the size of the companies that could contract for this, if we could only have small and medium enterprises which are the drivers of economic growth anyway, rather than corporations that will anyway take their profits to the Virgin Islands or somewhere else.

     

    Porter

    Lord Howe, another criticism that's aimed at these proposals is that private companies, quite rightly, will come in and want to cherry pick the most profitable and easy work for them to do and leave the NHS perhaps with the most costly and difficult and thing like care of the elderly for instance, are you worried that we might emasculate the NHS and that what's left might not be strong enough to hold itself?

     

    Howe

    We put provisions into the act to prevent cherry picking and there's all sorts of - we're not keen on cherry picking at all - there are all sorts of ways in which we can address that.  One of them is by making the contracts that we have rather more sophisticated than the ones we've seen in the past.  But what cherry picking means is that a provider can come along and sweep up the easy cases and get paid as if they were more difficult cases and pocket the profit.  That's what we've got to avoid.  There's nothing wrong I think in having a specialist provider whose job it is to do routine hip replacements or something like that, as long as we're clear that they're only taking the easy cases and only paid for the easy cases.  It's the cherry picking of the easy cases leaving the difficult ones to the NHS and private providers pocketing the profit, that's what we've got to get away from.

     

    Porter

    But they're going to be in competition aren't they with the existing NHS facilities, so if you're saying it's okay for a private provider to come along and cherry pick the easy cases, so they're getting I don't know half the money, and let's say they take half the money, there may not be enough money left to maintain my local orthopaedic department in the district general.

     

    Howe

    Well what we say under the last government was private providers coming along and entering into contracts with the NHS for X number of patients and being paid over the odds for what they were doing, that's what we've got to get away from.  I don't see any problem with an independent provider who specialises in a particular process offering an efficient and cost effective service for a procedure.  It doesn't leave the NHS any worse off because the NHS would be paid the same amount.  And that's another point to emphasise - that competition when it occurs in our view should only be on the basis of quality and not on price.

     

    Porter

    Martin, what's your vision for the future, if I was to take you forward five years, I mean what's your nightmare scenario from your concerns at the moment?

     

    McKee

    It is very difficult to tell, this is a premise of - it allows almost anything to happen.  This bill also is entirely consistent with what you describe as a nightmare scenario where the huge transaction costs that are involved, the costs of monitoring all of this, the armies of accountants to check that the corporations are not cherry picking, that will leave very little money for patient care and we can see non-urgent surgery already being rationed turning into something like NHS dentistry, in that you have to pay for much of the non-urgent surgery that you might require - you have a cataract or you have arthritis in your knee and you may well be asked to have top up insurance....

     

    Howe

    Could I just interject there?  We're very clear and it's put in the act that we are not moving in any way away from the central principles of the NHS that care should be provided free at the point of use and it should be a comprehensive service.  People are not going to be asked to pay for their ... this nightmare scenario that's being painted I don't recognise at all because one of the other things we've said is that the administrative costs of the NHS have to be kept within fixed limits and that is now mandatory, so we cannot see the administration swallowing up a larger and larger proportion of the budget.

     

    Porter

    When might we be able to see the revised regulations in clearer language?

     

    Howe

    I'm hopeful that you will see them in a very few days, they've been drafted.

     

    Porter

    Minister for Health Lord Howe and Professor Martin McKee, thank you both very much.

     

    And we are going to be taking a closer look at the NHS reforms and what they might mean for you in a special edition of Inside Health next month. We are keen to hear your views and your experiences - either as someone using the NHS, or someone who works in it. Send a tweet to @bbcradio4 including the hashtag insidehealth, or e-mail us via insidehealth@bbc.co.uk.

     

    Listener, Rachel Weeway, contacted us with a query about contraception in people taking medication for epilepsy.

     

    Weeway

    There seems to be some confusion in the epilepsy world about which contraception to use when a girl is taking an anticonvulsant medication such as lamotrigine.

     

    Porter

    More than half a million people in the UK have some form of epilepsy, many of them younger women depending on contraception - or coming off contraception to start a family. And there are some important interactions.  John Duncan is Professor of Neurology at University College London and Medical Director of the National Society for Epilepsy.

     

    Duncan

    Lamotrigine doesn't have a major effect on the effectiveness of the oral contraceptive.  What can happen though is that the combined oral contraceptive pill that contains the oestrogen and progesterone can result in lowering of the lamotrigine levels.  Now where this can catch you out is that a person, a girl, may be taking lamotrigine through her teens, maybe a modest dose, everything is well and after two or three years she seeks contraceptive advice, she may be starts on the contraceptive pill and the prescriber isn't aware of the possible effect of the contraceptive pill on the lamotrigine.  She starts taking the pill, the lamotrigine levels in her go down, even though the dose has remained the same and she's therefore less protected against seizures.  So you could have a scenario where somebody's in their late teens, they're becoming independent, they're driving, they start taking the pill, the drug levels of lamotrigine goes down and she has a seizure and that's a really negative experience all round.

     

    Porter

    So that's where the contraception is having an effect on the epilepsy and the epilepsy medication, what about the other way round - are there any significant interactions where the medicine that you're taking for epilepsy might reduce the effectiveness of your contraception?

     

    Duncan

    This indeed is a more well know problem.  The issue is that some of the epilepsy drugs affect how the liver disposes of other medications and it's the drugs that are called the enzyme inducing drugs.  The commonly used one would be carbamazepine, oxcarbazepine, the older drugs phenytoin, phenobarbital and promidone and high doses of the drug called piromite [phon.], all of these may speed up the rate at which the liver gets rid of other drugs, such as the oral contraceptive pill.  This means that if somebody wants to rely on the oral contraceptive pill for reliable contraception they would need to take a larger dose of the contraceptive pill to be assured that they're going to be protected.

     

    Porter

    And if a woman's contraception fails then the situation can become even more complicated for all concerned.  Pregnancy can have implications for the mother's epilepsy and her epilepsy and the drugs she takes to treat it can cause problems for her baby.

     

    Just around the corner from Professor Duncan's office in the National Hospital for Neurology and Neurosurgery is a special antenatal clinic run jointly by obstetricians and neurologists to look after women with epilepsy.  Women like Valenteen Rabine who was diagnosed with epilepsy eight years ago after she started having seizures while asleep.

     

    Rabine

    When you become pregnant one of the major risks, which actually happens, is that your body eats away at the drugs at the lamotrigine much faster than it would do if you weren't pregnant.  So the real fear is that you start taking more and more of this medication when you're pregnant and what goes round in your mind is is this going to harm the baby.  So to have the neurologist and the obstetrician, both of them, in the same room was very comforting in that you've got one person who knows a lot about the safety of the baby and then obviously someone who's trying to control your epilepsy at the same time.

     

    Heaney

    Hello, I'm Dominic Heaney, I'm a consultant neurologist, we're here in the UCLH obstetric neurology clinic.

     

    Porter

    What's in it for the patient, what do you think you offer them that they need that they don't get elsewhere?

     

    Heaney

    What we do is we're sitting down with the obstetrician, me the neurologist, in the room and the woman herself who's pregnant and we're often there able to answer the questions that the patient feels she can't ask the obstetrician because that's a neurology matter or vice versa and also questions that I might want to ask the obstetrician or the obstetrician wants to ask me and we get the questions sorted out very, very quickly, it doesn't have to be one of these well I need to write to your neurologist to find out, this is really good.

     

    Porter

    So the three of you are sitting round the table and you're all learning something. I mean what are the sorts of issues that come up?

     

    Heaney

    Well there's often quite a lot of misconceptions about epilepsy in pregnancy that may be they can't have an epidural anaesthetic or perhaps they think that they'll absolutely have to have a caesarean section and most of the time we're really myth busting that the caesarean rate is exactly the same as women who haven't got epilepsy, epidural is actually favoured - you want good analgesia, allow the woman rest during the long labour period and reassuring and saying that actually it can be quite normal.

     

    Porter

    So reassurance is obviously a key part but what other sort of input might you have, what sort of changes might you make to their care?

     

    Heaney

    Yeah I think often the emphasis that.... really needs to keep taking the medication during the pregnancy, it's about making sure that appropriate vitamin supplementation is taken earlier on - folic acid, very important in those first 12 weeks.

     

    Porter

    And why is folic acid so important in people with epilepsy?

     

    Heaney

    Well we think that the anti-epileptic medications may lead to an increased risk of neural tube defects, that's things like Spina bifida and by taking high doses of folic acid this can be prevented.

     

    Porter

    So all women planning on getting pregnant would take folic acid but women with epilepsy particularly important they take a higher dose?

     

    Heaney

    They take a bit extra yeah, we aim for five milligrams a day which is a big dose.

     

    Rabine

    There were a couple of seizures along the way when I was pregnant and that continued to be alarming, I'm actually pregnant again and I have had them this time round as well, it's rare that it happens.  The first thing that happens when you wake up, when you realised you've had one, and the way I realise I've had one is by biting my tongue so I wake up with a sore tongue and so the first thing I do is ask my husband if I've had a fit or he tells me that I've had a fit and obviously the first time it happens you go into panic mode thinking oh god has this hurt the baby, that's when the neurologist and the obstetrician say to you no, even when you're having a seizure as long as you are in a safe place then it causes very little risk to the baby.

     

    Porter

    But the medication that the mother has to take to control her seizures can sometimes harm her baby and doctors have to balance the benefits against the risks, which is why it's vital that pregnancy is carefully planned - but what does that actually involve?  Professor John Duncan.

     

    Duncan

    The first issue is are we sure she's got epilepsy because there are some people who have a diagnosis of epilepsy where the diagnosis is not entirely secure, one should always review that question when you first meet somebody.  And if the diagnosis is secure the question will be are the seizures well controlled or not.  And if maybe the person hasn't had seizures for many years the question might be is it safe to discontinue the anti-epileptic drugs prior to any pregnancy.  Now everybody's different so the job of the neurologist is to go through with the person what's their individual risk.  And then of course one has to consider what would the implications be of the seizures happening again if the medicine was taken down.  And again it's so variable - if somebody lives in the city and they walk to work a seizure of course is a bad thing but it doesn't have anything like the implications than if say they work as a primary school headmistress and they live in a small village and have to drive to get to work to pay for the mortgage.  So the implications of one seizure are vastly different from person to person and that's going to affect the person's choice.  I think this has to be set against what's the risk of the drugs that the person is taking affecting how the baby develops.  And again not all drugs are the same, there's one drug called sodium valproate that it is clear carries a higher risk during pregnancy than many of the other commonly used drugs.

     

    Porter

    A study looking at outcomes in pregnant women who take sodium valproate found that around one in 10 of their children showed some form of intellectual or behavioural problems.  It was led by neuropsychologist Professor Gus Baker from the University of Liverpool.

     

    Baker

    Our research has suggested that children who are born to sodium valproate are likely to have lower IQs, slightly worse memory problems, language difficulties and impairment in their behaviour.  For example, you're likely to have a child that has got an IQ of 10 points less.  Now although that doesn't sound a lot that sometimes can be the difference between going to university of not going to university, getting GCSEs or not getting GCSEs, working in skilled as opposed to unskilled labour.  So IQ points are important and we know that there is clearly a difference between those children exposed to sodium valproate and those children not in these key areas.  But can I just say Mark it's really important that we put sodium valproate in context.  This is a very good anti-epileptic drug, it's the most common drug prescribed for idiopathic generalised epilepsy and it's shown to be far more effective than many of the other drugs in controlling seizures in women with idiopathic generalised epilepsy.  So we mustn't think about throwing out the baby with the bath water when we think about this particular drug and its effects.  What we need to do is to make sure that if a woman has to be on sodium valproate we think about what's the lowest dose that she could take while protecting the outcomes for her unborn child.

     

    Porter

    And it's not just sodium valproate - or the effects of drugs on the developing brain - that can cause problems. John Duncan.

     

    Duncan

    The other commonly used drugs we mentioned carbamazepine, oxcarbazepine, lamotrigine earlier, all of these with average doses carry a risk of a major malformation in the baby of between 2 and 3%.  Now that compares with a background risk that any woman would have of about 1%.  So you could look at that two ways - one is that goodness the risk has gone up by a factor of two or three that's terrible but really the way it should be looked at is that the chances of there not being a serious problem have gone down from 99% to 97%, it sounds much less dramatic if viewed in that more realistic way.  It is, I think, clear that if someone takes two or more drugs the risk is increased, so in general one would aim to get somebody, if possible, on a single drug prior to conception.  I think it's also clear that the bigger the dose -and this makes sense really - the bigger the dose the higher the risk. 

     

    Porter

    But the key here is that a lot of these women won't be under regular neurological follow-up, particularly those who are stable on their medicines.

     

    Duncan

    Absolutely, I think I mean generally absolutely a valid reason to return to a specialist for discussion of the options and the way forwards prior to conception.  And the key thing is to do this before conception occurs as I think many people are aware, over half pregnancies are unplanned in this country.  So I think for that reason it's always good if one's prescribing for a girl who may have children in the future, planned or unplanned, to aim for a treatment regime that is as less likely to be deleterious through pregnancy as possible and for that reason often one would recommend that someone started taking folic acid, five milligrams daily, even if pregnancy isn't on the one, two or three year plan, it just increases the chances of a good outcome.

     

    Porter

    Professor John Duncan on the importance of pre-conceptional planning in women with epilepsy.

     

    Now how do you measure your child's temperature when they're unwell?  Temperature's often the first thing a worried parents shares with their GP but what constitutes a fever and how should you be measuring it?  Inside Health's Margaret McCartney's been investigating - Margaret, forehead thermometers are generally frowned upon these days aren't they?

     

    McCartney

    Yeah I mean the bottom line is that they're just not accurate enough to be relied upon.  The thermometers work well except in critically ill patients, which is a paradox that isn't really terribly useful.

     

    Porter

    Now these are basically the strips aren't they that you get of coloured blobs somewhere along the line which equates to a temperatures - 37, 38, 39 whatever?

     

    McCartney

    That's right they light up in different colours according to how high your temperature allegedly is.

     

    Porter

    So what's the evidence behind taking temperatures, what should we be using?

     

    McCartney

    I think that NICE have been quite clear in saying to us over the last couple of years that you don't need to specifically treat a high temperature in a child, you should treat a child who's got a feverish unwell illness and the fact that they're feeling unwell and feverish rather than what the exact temperature is.  So there's that argument on one side of things...

     

    Porter

    Well let's just clarify that.  So if little Johnny is running around and appears to be fine and is eating and has got no outward signs of trouble but has a temperature the age old advice oh you must make sure the temperature comes down, we don't do that anymore?

     

    McCartney

    No.  NICE have basically said there's no need to so we don't need to be specifically concerned about the temperature, what we should be concerned about is the child's overall holistically, how is that child, but we don't need to be so concerned about getting the numbers into supposedly perfect terms.

     

    Porter

    Okay, well let's assume that we are worried about our child's condition and we want to check their temperature in addition, how should we be checking it, either as a parent or as a health professional?

     

    McCartney

    Sure, so mercury thermometers are no longer sold and they're not used in hospitals anymore, so we can't use them...

     

    Porter

    But that's an environmental issue isn't it, rather than a health... they were perfectly good it's just that they're...

     

    McCartney

    It's just that the mercury was poisonous.  And then we have electronic thermometers which are the kind of digital ones that can be placed under the armpit or in the mouth.  And then there's infrared ear thermometers which are the most expensive type usually but pretty accurate.

     

    Porter

    So we're allowed to use electronic ones under the arm, under the mouth or put something in their ear?

     

    McCartney

    Yes that's essentially it.

     

    Porter

    As well as using the right equipment to take the temperature you've obviously got to interpret the result, I get a lot of patients coming in to see me who say my child had a high temperature, it was 37.3 which I would regard as normal obviously but what is normal and what is abnormal, do we have any set parameters?

     

    McCartney

    Yeah I think that's another really good question.  So NHS Direct say that a normal temperature ranges from 36 to 36.8 degrees centigrade and they will also say that a temperature of above 38 degrees is classed as a fever, so you get away with 37 degrees being a bit above normal but not actually being a fever.  And it's also notable that an armpit temperature with a digital thermometer is about half a degree Celsius lower than the body's core temperature, which is what you're trying to measure when you take a thermometer reading.

     

    Porter

    Right, so you would do 38 would be - we'd regard that as a fever using the mouth or the ear but if you do it in the armpit and you get 37.5 that technically is a fever as well.  So there's a grey area, isn't there, between their upper limit and normal which is 36.8 and when they're talking about you having a high temperature which is 38, so that's the grey area...

     

    McCartney

    What they class as a fever, yeah.

     

    Porter

    But we would only worry about temperatures when they get to 38?

     

    McCartney

    Yeah and I think as well as that you take in the context of the person because you could be quite worried about someone that appears to have a normal temperature, if you think, for example, they might have signs of meningitis, they could still have a normal temperature, whereas a child with a higher temperature who's feeling feverish, feeling unwell, may actually be clinically quite well, they might be running around eating and drinking and feeling alright.

     

    Porter

    But for practical purposes Margaret I'm thinking not in children who are seriously ill but someone who's got a minor illness, parents often use temperature don't they to differentiate whether the child should go to school or not, I mean if they've got a temperature yes there's something wrong with them they can stay at home but otherwise they're booted out the house.

     

    McCartney

    Yeah I'm not sure about that personally, I think children can be quite unwell with a normal temperature and I think children can be quite well with a little bit of a high temperature.  So I'm not quite sure if I would use that as an arbiter of how - even if a child is well enough to be at school or not.  Incidentally the Health Protection Agency - and I'll put a link on this to my board later on - have a fantastic set of guidelines about which children with which diseases should be off school and for how long and which ones can still go to school.

     

    Porter

    Ah maybe we should print if off and have it on the fridge of every home.  But Margaret the bottom line of this is that it's about looking at the child as a whole, rather than worrying too much about their temperature.

     

    McCartney

    Absolutely and I think that's where the parental instinct probably comes in more than anything else - if you're worried ... I mean what doctors - and you'll have been told this as well Mark - if the parents are worried about the child, if the child's not right, if the child doesn't seem well, then the doctor should be worried too.

     

    Porter

    Irrespective of their temperature.  Margaret McCartney, thank you very much.

     

    Just time to tell you about next week's programme when I'll be finding out more about a new test that can predict which women are likely to go into premature labour and the link between sex and cervical cancer - do all women need regular smears?

     

    ENDS

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