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INSIDE HEALTH – Ministrokes, Midwife study, Cyclic vomiting syndrome, Noise in intensive care

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Programme 4.

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TX:Ìý 04.10.16Ìý 2100-2130

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PRESENTER:Ìý MARK PORTER

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PRODUCER:Ìý FIONA HILL

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ICU noises

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Porter

Imagine trying to sleep through that. If would be difficult enough in the comfort of your own bed, but nigh on impossible if you are desperately ill in a hospital bed on a busy Intensive Care Unit.

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Edmunds

You try to dose off but it’s very fitful, probably not more than a couple of hours a night, if that.Ìý But then there would be an alarm going off nearby or there might be a patient close by being cared for by a nurse or whatever and so trollies are coming in and things are being moved about.Ìý The lights are on all the time.Ìý You can’t tell what time of day it is.Ìý So very, very fitful.

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Porter

More from Peter, and moves to make Intensive Care quieter and more patient friendly, a bit later. Along with a closer look at recent headlines suggesting that midwife led care in pregnancy may not be as safe as previously thought. And an insight into a very unpleasant condition - cyclic vomiting syndrome.

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Chong

It’s as if there is a switch that’s been turned on and then after vomiting severely for a day or two days or perhaps even longer it suddenly stops and the patient is very well afterwards before it starts again.

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Porter

But first an update on the latest management of mini-strokes – otherwise known as transient ischaemic attacks or TIAs.Ìý They are caused by a temporary disruption in blood flow to the brain resulting in similar symptoms to a full blown stroke – such as weakness, slurred speech etc. - but which only last minutes or hours, and always resolve fully by the next day.

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When I first qualified in the eighties it wasn’t unusual to put patients to bed at home with a reassurance that it was only a mini-stroke and that they had been lucky. But back then we didn’t realise just how important a warning sign of imminent danger they were.

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Today we do, and TIAs are treated as emergencies. As a result the outlook for those affected has been transformed. And much of the impetus behind that progress can be attributed to the work of just one man and his team.

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I went to the John Radcliffe Hospital to meet him – Peter Rothwell, Professor of Clinical Neurology at the University of Oxford.

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Rothwell

The majority of strokes are clinically silent, if you look at the brain, a lot of people who’ve never had symptoms of a stroke have a number of small strokes on the brain scan.Ìý So TIA is part of a range from silent to severe.

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Porter

Looking at how the management of TIA has changed, what’s been the biggest fundamental change and what’s driven that?

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Rothwell

It used to be thought that the risk of a major stroke after a TIA was about 1% at one month, so appreciable but not an emergency.Ìý And in fact what was shown was that the risk was about 10% at one week, so much, much higher and well worth treating as an emergency.

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Porter

Now you were involved in that research.

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Rothwell

Well one of the first clues we found was that we were running what was then a standard TIA service, which was a weekly clinic, and we found, as you often do in clinics, that about 10% of people didn’t turn up.Ìý And so we audited the reasons for these DNAs, as they’re called, did not attends, and it turned out that about half of the patients had had a major stroke after referral but prior to being seen in the clinic. And so we then set up a proper epidemiological study, the Oxford Vascular Study, to actually define that risk properly.Ìý And we found that it was in fact much higher than we’d presumed before.

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Porter

So the danger period for someone who has a TIA is in the first few days?

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Rothwell

It is, it’s a warning that you’re at very high risk of a stroke and that whatever causes a stroke is active at that time.Ìý And what we then found by treating these patients much more aggressively, we arranged an emergency daily clinic and we gave them all the standard medication – aspirin, blood pressure lowering drugs, statins – on the day.Ìý We found that by doing that we were able to reduce this high early risk by 80%.Ìý So a big impact of urgent treatment.Ìý And we then went back to some of the old trials of these different drugs and realised in fact it was the aspirin that was the main cause of that benefit.Ìý So if you’re given aspirin within a few hours of a TIA or minor stroke that itself will reduce the risk of a major stroke by about 80% over the next few days.

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Porter

People will be familiar with the protective effects of aspirin but perhaps not understand what it’s actually doing.

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Rothwell

Well I think it’s very interesting from a mechanistic point of view in terms of stroke what aspirin does is block the platelets, the sticky parts of the blood, that form blood clots.Ìý So by doing that it prevents stroke and it shows us obviously how important platelets are in causing stroke.

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Porter

Now we’ve known about aspirin and platelets and sticky blood for many years so why wasn’t it being used quite so aggressively?

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Rothwell

I think because people had done the trials of aspirin and other drugs in stroke prevention with a much more long term view, people had done trials, followed patients up for many years and shown at the end of five years if you take aspirin the risk of stroke is reduced by about 10-15%, so it’s worthwhile but not dramatic.Ìý But people hadn’t realised, because there wasn’t an understanding of this high early risk, that in fact when you drill down and look at the data nearly all of that long term benefit in the first few days is just maintained long term but it all accrues in those first few days.

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Porter

So the strokes that are being prevented are those strokes that might occur in the first week for instance?

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Rothwell

Exactly, exactly.

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Porter

So how’s that changed our management, what’s the current gold standard?Ìý I mean if you had a TIA how would you want me, as your GP, to manage you?

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Rothwell

In the UK now and in fact in pretty much all countries around the world there are now emergency daily TIA, minor stroke, clinics.Ìý So if someone has a warning event then they either go straight to A&E and they’ll get treated there and then passed on to a clinic the next day.Ìý Or if they see their GP, in certainly most parts of the country, there’ll be an emergency TIA service they can go to the next day.Ìý But they should be given aspirin immediately, there’s no need to delay treatment before you’re seen in the clinic.

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Porter

What about patient self-medicating – is there ever a case for a patient having an unexplained neurological and absence episode, not being able to find the right words, visual – I mean all these sorts of things could be caused by many other things of course, including migraine, for instance, but is it okay to take an aspirin in a situation like that?

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Rothwell

I think it is, I mean the guidelines if you get chest pain are that you call 999 but you take an aspirin as well.Ìý And we tended to shy away from that with stroke-like symptoms but in fact there’s no logic in doing differently.Ìý If you’ve had some transient neurological symptoms, sudden onset, unfamiliar, you’ve never had them before then there’s very little danger in taking an aspirin and if it is a TIA it will reduce the risk of stroke by about 80%.Ìý So the risks are tiny and the benefits are potentially enormous.

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Porter

And sudden onset neurological symptoms, that means what?

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Rothwell

So sudden onset neurological symptoms which are generally stroke-like in the sense that people might have transient weakness down one side, sudden clumsiness in the right or left arm, sudden loss of speech, sudden confusion even.Ìý Working in Oxford I’ve had many academics with TIAs of esoteric types, such as sudden inability to conjugate Latin verbs.Ìý So essentially any sudden onset negative neurological symptom.

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Porter

Assuming I come to the clinic, no obvious underlying cause is found but I’m put on all the medicines, including aspirin, what’s the outlook for me going forward?

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Rothwell

The risk of stroke now is quite a lot lower, it’s about – after a TIA – it’s about 1% at one month and 2-3% at one year.Ìý So if your risk factors are treated aggressively you can tolerate the medication and you continue to take it then the outlook is now much better than it was 10 or 15 years ago.

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Porter

And much of that improvement is due to the work of the modest Professor Peter Rothwell.

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Well listening to that in our Glasgow studio is Dr Margaret McCartney.Ìý Margaret, we were talking there about the management of TIAs but there’s also been a transformation for the management of major strokes and of course heart attacks as well hasn’t there.

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McCartney

Yeah, what’s really interesting is how clinical research has led to service reorganisation.Ìý So I was a junior doctor when the big major trials were being done about how best to treat heart attacks and literally services were changed in response to that because it became clear that the door to needle time, the door time from you coming in through the front door with your heart attack and then getting your thrombolysis drug made a big difference to how well you would get on afterwards.Ìý And so services were refigured to make that time as short as possible.Ìý And it was very much something that was audited, looked at, we were scolded if it was for too long and then paramedics ended up getting trained to do it as well because there was a concern that the ambulance journey time was just too long in rural areas for patients to arrive at hospital safely within that timeframe.Ìý So it was very much about how can you reorganise a service to do this faster.Ìý And of course we’ve seen that with stroke services, we’ve locally got a hyper acute stroke unit, which is really the go faster version of the stroke unit of old, really they’re wanting to see people as soon as possible.Ìý The whole service has been built around the evidence that has been generated from these trials that have been done, so it really has been a revolution in my recent lifetime past.

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Porter

Well I was looking at the results for heart attacks, I mean it wasn’t that long ago that eight out of 10 people died and today eight out of 10, at least eight out of 10 people are expected to survive.Ìý But Margaret, some other research I wanted to talk to you about was this recent study, which has prompted a lot of media coverage questioning the safety of midwife led maternity care.Ìý The study looked at outcomes in nearly a quarter of a million births in New Zealand and found that women whose care was medically led – by a doctor – as opposed to midwife led, tended to fare better, their children fared better.Ìý And it’s a worrying finding given that midwife led care is generally first choice of most otherwise healthy pregnant women here in the UK.Ìý So first of all Margaret, how does care in the New Zealand compare to the sort of care we get here in the UK?

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McCartney

It’s similar and it’s different.Ìý So the system changed in New Zealand in 1990 where people could train to be midwives directly, they didn’t have to have a nursing background first of all.Ìý And that’s at no cost to the patient.Ìý The only time you pay in New Zealand for your medical care is if you want an obstetrician to be in charge of your care but you don’t have a medical reason that makes that necessary.Ìý So it’s free if you need it but it’s not free if you don’t.Ìý And that’s really the main distinction between the two of them.Ìý In the UK we mainly have midwife led care for women who at low risk but if you have medical complications or risk factors then you tend to have some obstetric involvement at a distance or very closely, depending on how sick or ill you are.

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Porter

And of course there’s no pressure in the UK here, depending on finances, there’s no financial implications of going with the midwife, it’s not cheaper to go with the midwife.

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McCartney

No, no, that’s absolutely correct.Ìý This study that was published PLOS looked at women who’d been assigned a midwife, as is usual for a low risk pregnancy, or women who’d either chosen to or were assigned to an obstetrician.Ìý And what they found was there was a difference between the outcomes for those women.Ìý So there was a difference in stillbirths, there was a difference in neonatal mortality rates.Ìý And what they’re saying is could the person that’s been looking after you be responsible for that.Ìý So the problem with this study was it was not a randomised control trial, it was literally just following women up to see what happened.Ìý And the groups of people that were being looked after by the midwives and by the doctors were very, very different and I don’t think they’re really fairly comparable in any way.

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Porter

About nine out of 10 of them weren’t they were looked after by the midwives, so there were far more looked after by the midwives.Ìý But could there have been some bias in the women?Ìý We were talking about having to pay for your care, might that have affected the sort of – I mean presumably the researchers allowed for that.

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McCartney

Well you can adjust but only up to a point.Ìý So the midwives tend to look after women who were more ethnically diverse, who were more overweight and who on average registered later, which is a risk factor for less good outcomes in pregnancy.Ìý So these were not equivalent groups that were being compared.Ìý And I think that makes it tremendously difficult to say whether it’s the effect of what kind of patients were being looked after rather than the case they were getting that made the difference at the end of the day.

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Porter

How does it stack up against the existing evidence?Ìý I mean my understanding of that was that midwife led care is a good thing.

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McCartney

Midwife care is a very good thing and we have lots of trial evidence to prove that.Ìý So this was not a randomised control trial but we have randomised control trials that have already been published, there was a Cochrane Review published in 2016, which basically said if you’re a low risk woman you have lots of advantages towards being looked after by a midwife led group of midwives, rather than an obstetrician because you’re less likely to have an assisted birth, you’re more likely to have a normal birth, less likely to need an epidural and overall being better for you and for the baby.Ìý What’s not to like really?Ìý So there’s no question that if a woman is at higher risk she’s going to need more assistance, either during pregnancy or during labour, that’s absolutely fine but for low risk women, to me, the evidence is really pretty clear and this new study from New Zealand doesn’t change the view of evidence that I have so far.

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Porter

And just to be clear that view is – that if you were a normal otherwise healthy woman having a baby what would you do?

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McCartney

Oh I’d absolutely have a midwife led birth, no question.

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Porter

Thank you Margaret, and there is a link to the New Zealand study on the Inside Health page of the Radio 4 website – where you will also find details of how to get in touch.

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Sean McCleery tweeted to ask if we would consider covering this little known, but rather unpleasant condition - cyclic vomiting syndrome.

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His son Roger, who is also happens to be have Type 1 insulin dependent diabetes - has had CVSÌý for three years and gets bouts of vomiting that can go on for two weeks or more, and mean he ends up in hospital every couple of months or so. And, as chance would have it, that is exactly where Roger was when we caught up with him.

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McCleery

Wasn’t able to keep any food, any drink down at all.

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Porter

And when you say bouts of sickness, what’s the first sign of trouble?

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McCleery

Stomach cramps and I usually feel like I want to be sick straightaway.

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Porter

And that would go on for how long in a typical attack?

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McCleery

It can go on for a couple of hours or it can go on for days.

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Porter

And if it goes on for days, because you have a diabetes presumably that plays havoc with your diabetes does it?

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McCleery

Yes, with my diabetes I have a sick day rule.Ìý I have a district nurse come into administer antiemetics to me, anti-sickness medication.Ìý But at the moment it’s getting worse and worse.

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Porter

So you’re having a few days or more off every month feeling like this, sometimes in hospital?

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McCleery

Yeah, yeah, yeah.

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Porter

What do you do for a job?

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McCleery

I was a chef, full time chef.

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Porter

Have you been able to hold that down?

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McCleery

Not for the past sort of three years I haven’t, no, due to this illness.

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Porter

Have the doctors told you why you’ve got this condition?

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McCleery

No, [indistinct word] having a lot of trouble at the moment trying to get it sorted.

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Porter

Tell me how you feel right now, at the moment?

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McCleery

I’m feeling sick and rough, trying to eat dinner sort of feeling like I want to be sick.

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Porter

When was the last time you were actually sick?

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McCleery

About an hour ago.

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Porter

Roger McCleery speaking to me from his bed in Leighton Hospital.

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Around 2,000 people across the UK develop cyclic vomiting syndrome each year – many of them children, in whom it was first described back in the 19th Century.

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Dr Sonny Chong is a consultant paediatrician and gastroenterologistÌý with a special interest in the condition

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Chong

It was actually Samuel Gee who was the physician at Saint Bartholomew’s Hospital in London who actually first described it in the annals of Saint Bartholomew’s Hospital.Ìý And it was interesting that he actually described a couple of children who actually had these so-called episodes of vomiting which were described initially to be like fits.Ìý But subsequently it dawned on him that it was more likely to be this condition called cyclic vomiting syndrome, which is very much akin to a form of migraine.

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Porter

So it’s something that we’ve been looking at for nearly 200 years and possibly a lot longer but not written up before that?

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Chong

Yes.

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Porter

Is this something that normally affects children, does it start in childhood?

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Chong

It is certainly a disease that’s described in children more commonly but we’re just beginning to realise that there are many adults who are affected by this condition and I think it’s by word of mouth, by literature that the adults are now reading about the symptoms in childhood and they are now recognising that they may have the same condition.Ìý Similarly the children who have the condition actually grow up to be young adults and they may continue to have this condition in about one third of the patients, yeah.Ìý So the particular scenario, the picture, is a patient who’s thought to be completely well has an episode of vomiting and it occurs in a stereotypic manner, say once every month, once every two weeks, but it is episodic and it seems to work like clockwork.Ìý And it can also go very quickly too.Ìý So it’s as if there is a switch that’s being turned on and then after vomiting severely for a day or two days or perhaps even longer it suddenly stops.Ìý And the patient is very well afterwards.Ìý So there is as if there’s a normal interval when they’re well before it starts again.

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Porter

This cyclical nature, I mean as a GP when you get things cyclically recurring like that it makes you think of migraine (and migraine) and those sorts of things, is there any link with that?

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Chong

Yeah, this is interesting because it’s a periodic syndrome.Ìý Many of the children who have this condition have it over a long period and perhaps after a couple of years they actually end up with migraine or with headaches.Ìý And there is a link that cyclic vomiting syndrome may be the precursor or the childhood equivalent of migraine.Ìý And because it’s associated with abdominal symptoms, with gastrointestinal symptoms it’s called abdominal migraine.Ìý

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Porter

I mean you’re a gastroenterologist but is the problem here something that’s happening in the gut or something that’s happening in the part of the brain that’s responsible for vomiting or both?

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Chong

I think this condition is the combination of both.Ìý It’s a condition that affects, if you like, the brain gut axis.Ìý The symptoms are probably precipitated by stress, infections, certain endocrine conditions, metabolic conditions can actually precipitate the symptoms.Ìý Even certain foods can precipitate the condition.

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Porter

How do we treat this?

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Chong

Now the treatment really consists of acute treatment, either at home or in the hospital, and then preventative treatment which could be given at home every day to stop the episodes from recurring.

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Porter

So the idea is we have two sets of treatment, one is that when you start vomiting there’s something to relieve that but also treatment to prevent the attacks happening in the first place.Ìý In the future then what’s the natural history of this disease?Ìý If you put somebody on a preventative medicine for a year or two and they’re well controlled can you withdraw the medicine or is it something they’re going to have to take permanently?

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Chong

Well that’s the question that I get asked most frequently in my clinics.Ìý Now as a rule that we follow the patients with cyclic vomiting syndrome if they do well for a year or two years we start to take them off the medication.Ìý But it’s got to be done cautiously because if one does it too early then you end up with recurrence of the condition and it is sometimes worse than when it first started.

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Porter

But do you manage to do that successfully?Ìý Assume somebody’s gone a year or two, I mean is there quite a good chance that they could come off the medicine is you go slowly?

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Chong

In my experience we have been able to stop the medicine probably in something like about 40 to 45% of the patients because about a third of the patients continue to have symptoms well into their adult life.

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Porter

Dr Sonny Chong. And I phoned Roger McCleery for an update just before the programme and am pleased to report that he is now back home and feeling better – although sadly still being sick.Ìý

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Now remember this from the top of the programme?

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ICU Noises

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Some of the noises you might hear on a busy Intensive Care Unit – even in the middle of the night. As Peter Edmunds discovered when he was admitted 18 months ago

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Edmunds

I was having an operation which required general anaesthetic and unfortunately for me my heart stopped for several minutes apparently.Ìý Not knowing that obviously I woke up in the IC unit, not knowing where I was and what was going on.

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Porter

How did you find the experience?

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Edmunds

Very, very noisy, is my main impression of what happened when I was there, lots and lots of noise from alarms and staff and bins.

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Porter

Tell me where the noise was coming from.

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Edmunds

Lots of different places.Ìý There’s a general background noise because there’s so much going on in there.Ìý But at night certainly I noticed that the levels of staff voice volumes is incredibly loud.Ìý I’m sure they’re not aware of how loud that is but it is very loud.

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Porter

Were there any other things that particularly bothered you?

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Edmunds

Lots of alarms, different alarms, obviously some are very important and obviously some aren’t so important.Ìý And some of them don’t seem to be turned off that quickly.Ìý And there are bins that get banged obviously and just general coming and going of nurses with trolleys etc.

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Porter

We all know hospitals are noisy, but perhaps not just how noisy? Julie Darbyshire is Critical Care Research Manager at the Nuffield Department of Clinical Neurosciences in Oxford where a team has been finding out by measuring noise in units across the Thames Valley region. And they are noisy.

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Darbyshire

Levels are about 55-60 decibels.Ìý Now to put that into context that’s a bit like a busy restaurant.Ìý And then on top of that we’ve got peak levels which go up to 120, that’s a bit like a pneumatic drill, so this is not a good place to relax and get better.

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Porter

And for those not familiar with decibels, I mean you basically get a doubling in perceived volume for every 10 decibel rise.

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Darbyshire

Exactly yes.Ìý So to say that something is 55 decibels, it’s considerably louder than the suggested level for hospitals which is 30 decibels, that’s like a quiet library…

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Porter

So it’s much more than twice as loud, yeah.Ìý Looking at your research what was making the noise?

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Darbyshire

We found that there’s constant activity, there’s something going on all the time.Ìý There’s alarms that go off all the time.Ìý Patients themselves make noise as well.Ìý It’s just the day to day comings and goings.

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Porter

So looking at the peaks, I mean these peaks going over – well over 120 decibels, extraordinarily loud, I mean what sort of noise was that?

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Darbyshire

We think, we’re not entirely certain, but we think it’s a metallic noise, it’s something that’s sudden and it’s sharp, so it’s the bin lids or it’s someone who’s dropped a metal bowl or it’s door slamming perhaps.

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Porter

Did you manage to get any sleep when you were on the unit?

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Edmunds

Very little.Ìý It’s very fitful.Ìý You try to dose off, there’s maybe a quiet period, if you can call it that, but then there will be an alarm going off nearby or there might be somebody – a patient – close by being cared for by a nurse or whatever and so trolleys are coming in and things are being moved about.Ìý So very, very fitful, probably not more than a couple of hours a night, if that.

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Porter

Julie, do you actually know how much sleep people are getting?

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Darbyshire

We do, yes.Ìý So sleep for patients in the intensive care unit is really, really bad, we’ve got some research that we’re currently doing here and that indicates that in any 24 hour period patients get between three and four hours sleep but that’s not continuous.Ìý What we found is that patients get two or three minutes at a time, to me that’s not sleep.

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Porter

It sounds almost like torture doesn’t it.

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Darbyshire

It’s awful, just awful.

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Holdaway

My name’s Mat Holdaway and I am matron and clinical director for critical care.

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Darbyshire

Mat, how aware were staff of the problem of noise?

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Holdaway

I think staff working in critical care have always been aware of the noise and noise overnight and it being a busy noisy environment but I think the work that Julie and her team have done has raised even more awareness.Ìý I don’t think anybody was perhaps quite clear how noisy it was but that noise was an issue.

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Porter

What about the effects of the noise on the staff themselves?Ìý This is quite a busy environment, I mean the noise levels came out about the same as a busy restaurant.

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Holdaway

It’s interesting, when you speak to staff about noise levels it’s something they don’t necessarily notice I think because they’re used to it and they work in that environment all the time.

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Porter

One issue with very poorly patients is that some of them might be on a ventilator, some of them might be sedated and therefore you maybe forget that the patient is sensitive to noise, you think well I mean they’re knocked out.

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Holdaway

Absolutely, I mean something that we instil upon all our nursing staff is that we should be treating patients as if they’re awake and actually still explaining what’s going on, if you’re going to move them, if you’re touching them, if you’re providing personal care to them.

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Porter

By definition intensive care is a 24 hour, seven day a week, facility but do you think there’s an understanding now that you do need to reflect a day and night shift in there because often people can’t even see daylight outside can they?

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Holdaway

No absolutely, so I think that is certainly improving and that day/night routine is something that’s more important to the nursing staff in providing for the patients.Ìý It can’t always be that way, when you’ve got a bay of four patients and an emergency admission comes in that day/night routine will be broken but it’s about going back to that as soon as that flurry of activity has happened.

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Porter

Since Julie Darbyshire highlighted the scale of the problem the units have taken steps to muffle the noise. Steps like putting quiet closures on the bins; staff training stressing the need for hush; night and day differentiation and rationalisation of alarms. But have they succeeded?

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Darbyshire

We think we have yes.Ìý So we’ve got sound recording equipment in the intensive care unit that records decibel levels, so we can’t tell what’s going on, we can just tell a level.Ìý We’ve had that down there for about six months now and in the three months between sort of the end of the year we averaged about 57 decibels, that’s normal, that’s what we would expect from any ICU in the country.Ìý We started to make these changes at the end of December and we’ve got December to April figures and we’ve brought those decibel levels down to about 53.Ìý We’ve made a huge difference by actually not doing very much at all.

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Porter

After you left the unit did you go on to a normal ward?

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Edmunds

I went on to a side unit, there were just two people, which was the complete opposite.Ìý I got – there was loads of peace and quiet and I got lots and lots of sleep and was a very happy person.

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Porter

So from that sense you were glad to leave the unit?

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Edmunds

Absolutely but of course they take marvellous care of you, I mean you’re happy to be there because you need to be there.Ìý They are saving people’s lives, it’s as simple as that isn’t it.

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Porter

Feels somewhat churlish to complain about noise.

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Edmunds

Why would you complain, come on, they’ve saved your life.

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Porter

A grateful Peter Edmunds.

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Just time to tell you about next week when I will be looking at the new Meningitis W jab for university students and teenagers – who should be getting it, when and where?

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And we will be visiting my home-turf to learn more about a rather unusual scheme on offer locally – allotments on prescription.

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ENDS