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CASE NOTES 4. - Respiratory Diseases
RADIO 4
TUESDAY 04/01/05 2100-2130
PRESENTER:
MARK PORTER
CONTRIBUTORS:
JOHN MOORE GILLAN
PRODUCER:
ALI AYRES
NOT CHECKED AS BROADCAST
PORTER
Hello. Today's programme is about respiratory diseases - the third biggest killer in Britain after heart disease and cancer, and the Cinderella of the NHS according to a new report out this week by The British Thoracic Society. One of a number of groups lobbying the government for more funds following publication of the latest international league tables that show a greater proportion of Britons die from lung disease than almost any other nationality in the world. Death rates from respiratory disease here are twice the European average, and only beaten globally by a handful of former Soviet Union states. But why?
Tuberculosis, TB, was originally spread to the rest of the world by pioneering Europeans. Two hundred years later, a third of the world's population now carries the disease - at least two million of whom will die over the next 12 months. TB now poses a relatively small risk here in the UK but the situation is getting worse - the number of new cases has risen nearly 50% in the last 20 years, and in some inner city areas, infection rates are 10 times the national average. I'll be finding out why TB is making an unwelcome comeback, and what's being done to combat it.
I'll also be discovering how a simple exercise programme can improve the quality of life for the million or so people in the UK left breathless as a result of chronic obstructive pulmonary disease (COPD) - better known to many as chronic bronchitis or emphysema.
CLIP
This is my last week and there's a vast improvement from week one. In distance you can say I could walk 20 yards and then stop, after this 30-40 easy.
PORTER
And lastly, asthma. As many as one in three children experience some degree of cough and wheeze as a result of the condition - I'll be finding out about a novel approach to helping them keep their symptoms under control.
My studio guest today is Dr John Moore Gillan, a respiratory physician at St. Barts and the Royal London Hospitals and president of the British Lung Foundation.
John, why do we fare so badly in the UK? We've got relatively clean air, smoking rates are falling and not that bad compared to continental Europe and one would hope a modern free healthcare system?
MOORE GILLAN
It's partly history. In the past we've not looked after our lungs properly, we have had very bad air pollution and air pollution is still pretty bad, although it's a different sort of air pollution from the problems that we had in the 1930s up until about the 1950s or so. Part of what we're seeing of course is a complication - a consequence of past smoking rates and not just what's going on with smoking now.
PORTER
Because we're looking at people presumably who are in their - people who are developing these problems are in their 60s and 70s many of them.
MOORE GILLAN
Yes, yes that's absolutely right and we do have very high rates of asthma and the reason for the rise in asthma in by no means certain and probably a number of different factors. There is also the question of resource - I think it does, I'm afraid, rather get treated like the Cinderella of the National Health Service and we only have half the number of lung specialists in this country that the European average has. And I think that must be having some impact upon the sort of burden of lung disease that we've got.
PORTER
Well let's start with TB. Probably best known as a type of chest infection, of course you cover East London, which is one of the - if not the worst area in the country. TB can actually affect other parts of the body as well can't it.
MOORE GILLAN
That's absolutely right. You almost always catch tuberculosis via the lungs, you catch TB by breathing in TB germs which have been coughed up by someone else with the disease. What usually then happens is that nothing happens - the germs just go dormant and you don't even become ill. But either at that time or later in the course of the illness the disease can spread to other organs in the body and the bits that we see most commonly affected are lymph glands - that's swelling in the neck usually - also the bones, the kidneys and sometimes tragically the brain.
PORTER
How infectious is it? If somebody has TB, perhaps in your office, if you're working with someone who has TB and they're coughing and spluttering away, what are the likelihood - what are the chances that you'd catch it?
MOORE GILLAN
Well TB is not very infectious, it is nothing like catching the flu for instance, where if someone sneezes and coughs over you a couple of times you've got quite a high chance of catching it. The people most at risk of TB are those who are living with someone else who's got active lung tuberculosis. The risks from casual contact are really very small. But if you have contact which is roughly equivalent to living with someone, for instance you're sitting across a desk from them and they've got active TB and they're coughing for weeks or months, well then there is a significant chance that you would actually catch the disease.
PORTER
Telltale signs in the early stages?
MOORE GILLAN
When you first ...
PORTER
Let's assume it's pulmonary TB.
MOORE GILLAN
Indeed yeah, when you first get infected by tuberculosis there can be no signs at all and that's the odd thing about TB that you can catch the infection and fight it off and just feel a bit Monday morning-ish for a few days and never anything more than that. But you can then become ill with it later on - months, years, even decades later. But if you are progressing to get active tuberculosis shortly after catching it the commonest symptoms and signs are a cough which just won't go away, fever and sweating, particularly at night. Sometimes coughing up blood as well and in particular just feeling rotten - losing weight, feeling off colour. Now we all get coughs and colds from time to time and I think that if everyone came to see you immediately they had a cough then general practice surgeries would be completely and utterly bombed out, even more than they are at the moment. But if you have got symptoms like that which are going on for a matter of weeks, particularly associated with feeling rotten, then it should just ring alarm bells that tuberculosis has not completely gone away in this country.
PORTER
Why is it such a problem in parts of London, I mean rates are rising - as I said in the introduction there - rates are rising in the UK but mainly it's a problem in particular parts of the country where they're going through the roof?
MOORE GILLAN
Yeah well absolutely anybody can get tuberculosis but right through recorded history it's been people who've been towards the bottom of the socioeconomic pile who've been most at risk. First of all, if you breathe in TB germs and you're fit and well and well nourished you'll probably fight off the infection. If you're poorly nourished and you've got other infections, you're ill in other ways, then you're less likely to fight it off and you're more likely to become ill with TB. Secondly, if you're living in overcrowded surroundings you're more likely to catch it from someone. And if you then seek medical help as quickly than you might do if you're in a more prosperous area you're more likely to pass it on to someone else. And so this vicious circle gets tighter and tightly and more tightly wound and rates go up in poorer areas.
PORTER
Now treatment involves quite a complex regime of basically antibiotics - antimicrobials - they have to be taken for quite a long time don't they.
MOORE GILLAN
They do. The TB bacterium because it grows pretty slowly it's quite difficult to attack. It's also got a remarkable ability to become resistant to antibiotics that we're using for them. So not only do we have to use special antibacterials - special antibiotics - you have to use them in combination, have to use them for a long time. And the standard treatment is to give four different antibiotics for a two month period and then two different antibiotics, although often combined in a single tablet, for a further four months. Some forms of drug resistant tuberculosis we're treating for a couple of years.
PORTER
Well I'm going to stop you there John because when you get lots of pills together that you have to take for a long time one of the big problems of course is compliance - getting - not getting the patients but asking the patients to conform to the treatment, take the drugs as prescribed. Kerry McSparon is the lead nurse at the East London TB Network - an organisation formed four years ago to coordinate and improve TB services across East London. One of the group's prime targets was to improve compliance.
MCSPARON
Our completion rates for 2003 were 96%, which our treatment outcomes should be defined as 90%, so we're well above that and we have been at least in the last five years and that's down to the nurses' dedication in working in partnership with the patients to complete their therapy. We will initiate discussions about their diagnosis, implications on their health, on their family's health, talk about their treatment. In that initial conversation the patients may take in half of what you say at most. So it's a continuous process of building that relationship with the patient where you can discuss openly about treatment, if they've forgotten to take any tablets, and even making arrangements for them to come into the clinic and have their treatment directly observed if that facilitates them completing their therapy.
PORTER
But there's more to the team's work than simply ensuring that people take their pills properly - good TB management often requires a more holistic approach.
MCSPARON
We've actually tried to address several social issues regarding tuberculosis, such as housing and funding for transport to come to clinic. So working in conjunction with social services, who actually come to our clinic every Monday, we will identify those who need priority for housing and they get fast-tracked to either get a new house or go to another house that's less overcrowded because that just helps facilitate spread of disease and we want to try and avoid that as much as possible. So commitment from local authority and the council has been really fantastic in addressing those issues.
PORTER
Kerry McSparon. You're listening to Case Notes, I'm Dr Mark Porter, and I am discussing respiratory diseases with my guest, chest specialist, Dr John Moore Gillan.
John, is compliance a problem in your clinic?
MOORE GILLAN
I think it's a problem for everybody and I'm doctor and I ought to know better but on the occasions that I've been prescribed a week's antibiotics I get to about day four and it's hard work remembering to get through to the rest of the seven days and from your expression perhaps you're not completely blameless in this regard either. If you're taking anti-TB drugs it's a complicated regime and if you're feeling absolutely fine two or three months in the temptation to stop is very high indeed and we really do need to make sure if we're going to avoid drug resistance that the whole course gets taken.
PORTER
What about the risk to foreign travellers briefly?
MOORE GILLAN
It's not really very high. But if you're going for a prolonged holiday or a prolonged stay in a country where there are very high rates of tuberculosis - South East Asia, Indian sub-continent - then it is worth just keep tuberculosis in mind, making sure you're protected so far as you can by BCG vaccination. And crucially if you then become unwell realising that TB is a possibility because that's the important thing - making the diagnosis early - then it's easy to treat.
PORTER
John, let's move on to asthma, another huge problem in the UK. What are the latest theories on why it's become so common?
MOORE GILLAN
Well the theories are there's no one theory - that's the important thing. And we know it's not going to be just one simple answer. One of the problems may be our genes and there are certainly some populations who are more at risk from asthma than are other populations. It may be changes in diet, it may air pollution and there's, I think, a very interesting theory which is that maybe we're getting too clean these days and in times gone by children were exposed to more dirt and germs in early life and their immune system just had to get used to dealing with it. But now that we're so much more hygiene conscious when we do get exposed to substances which we might become allergic our immune system overreacts and we then get asthma.
PORTER
And we're quite a lot better at picking it up as well aren't we. We used to have a lot of people, I remember as a young doctor in general practice, and we used to put people on antibiotics for their sort of wheezy bronchitis, which was probably poorly treated asthma.
MOORE GILLAN
Oh yes absolutely right. We are better at picking it up and I think that's been one of the great success stories of general practice in the last 10 years, has been better identification of asthma. But we mustn't let that blind ourselves to the fact that there has been a genuine increase, it's not simply that we're better at seeing it.
PORTER
Well a school in Lancashire has come up with a novel approach to dealing with the problem, we sent Lesley Hilton to investigate.
ACTUALITY - SCHOOL HEALTH ADVISOR
The blue inhaler that you use, what is another name for the blue inhaler?
Bluish.
Reliever.
Reliever - good. And why is it called a reliever?
Because it relieves your asthma if you're coughing.
Okay, your symptoms, that's good. Right Vanessa, what's the brown inhaler? ...
HILTON
Mayfield Primary School on the outskirts of Oldham is in one of the most deprived areas of the country. Death rates for respiratory disease are 36% higher here than in the rest of the UK. And more children are admitted to hospital with asthma than in more affluent areas. These children lose a lot of time off school and their asthma can restrict their social lives. Eight-year-old Hannah Coomes and nine-year-old Lewis Galbraith both have severe asthma.
COOMES
I have like wheezing and a lot of bad coughs and it makes me poorly a lot, makes me sick and I get chest infections and stuff.
GALBRAITH
I don't really like asthma because most of the time I can't really join in with the games that me and my friends play cos I start to cough a lot when I start running around.
HILTON
Their school is part of a Bronchial Boogie. An after school club for asthmatic children is held every week, where they're given health checks and advice on their medication. Janie Travis is a school health advisor.
TRAVIS
We teach them about their asthma. They understand what asthma is. We don't go into great depths obviously because they're children, but we teach them about why it's happening, how their lungs work, how the inhalers work to relieve the symptoms and prevent the symptoms. We do quizzes and things where they don't realise but they're learning about asthma whilst they're doing it.
ACTUALITY - MUSIC TEACHER
Get your flutes ready please and we'll warm up with a B note, so get your fingers in the right place. And we'll do B for two and then rest for two. One, two, ready go.
FLUTE PLAYING
HILTON
What makes the Bronchial Boogie sessions special is that as well as health advice the children are given a half hour music lesson on either the flute, clarinet or cornet. Playing a wind instrument shows them how to control their breathing, which in turn helps to control their asthma. Most children having music lessons want to learn to play a particular instrument, but these children had no idea of what was involved. Lisa Tott, their flute teacher, admits it was tough at the beginning, so how did she get them interested?
TOTT
Well I motivated them by playing lots of flute music to start with to show them how versatile the flute could be. Half of them didn't know what the flute sounded like or what it looked like so I played tunes that they would recognise just to get them initially interested. And then as the weeks progressed and they found that they could do more and more that in turn motivated them to practise themselves.
HILTON
Wendy Andrew from Oldham Music Services is one of the founders of the project. As a child she had asthma herself and found that learning a wind instrument and singing helped improve her breathing. Her own experiences shaped the after school club.
ANDREW
Initially the emphasis is on the compliance with the medication because asthma is a killer still and children need to take the medication. Parents need to be aware of the correct medication. Sometimes we found that children were not using their inhalers correctly because they didn't have the techniques so that's looked at. And then the music - the instrumental side, playing against the resistance of the instrument, learning how to breathe properly, and enjoying making music. Enjoying making music on it's own is a wonderful thing for any child.
ACTUALITY - MUSIC LESSON
Arms by your side, feet slightly apart, relax your shoulders, breathe in through your nose. And out through your mouth.
HILTON
The project has been incredibly successful. Before the Bronchial Boogie 45% of these children couldn't take part in school sport. Now that's down to just 15%. Wendy Andrew says that's made a huge difference to their confidence.
ANDREW
A lot of the children were very concerned about not being able to take part in sport or not doing well, but now they feel quite confident. The boys in particular all want to play football. And we started out with the children doing drawings for us about what life was like for them and we could see it was a big issue - the fact that they weren't able to take part very well in the sport, in the football. And then we asked for drawings at the end and we saw lots of them where we had a child holding a flute in one hand and kicking a football in the other, which we felt was quite significant!
HILTON
At the moment the project involves just a few primary schools. Its future funding is uncertain. Wendy Andrew would like to extend it and certainly based on the improvement in Hannah and Lewis that would benefit a lot more asthmatic children.
COOMES
I can do like more running around without having to use my inhaler as much. And I haven't been wheezing as much and coughing as much. I think it's really good because it's helping you to get better and you're like having fun at the same time.
GALBRAITH
It's really helped my asthma because I've learnt how to use my inhalers properly, how to control my asthma and what to do if I'm having an asthma attack or something. It's really fun and your asthma's getting better, as well as having fun at the same time.
PORTER
Hannah and Lewis from Mayfield primary school in Oldham.
John, it's tempting to use that as a justification for the dreaded recorder, not my favourite instrument, but it's probably as much to do with support and education isn't it - if you look after people with things like asthma and show them how to use their inhalers they tend to get better.
MOORE GILLAN
I mean that's true of asthma par excellence but as well as many other diseases as well. I come across people who can't use their inhalers who've had asthma for 20 years, including one or two doctors have been using inhalers wrongly for many years. Getting it right is crucial to good control.
PORTER
Let's move on to COPD - a much more common problem than TB but one that rarely receives the publicity it deserves - probably not least because of the name? What does COPD actually stand for?
MOORE GILLAN
Chronic obstructive pulmonary disease. Chronic means long term, it doesn't mean severe necessarily. Obstructive - blockage, that's easy. Pulmonary - lungs. Disease - disease. So this is restriction or blockage to airflow in and out of the lungs.
PORTER
Well perhaps some of our older listeners might have heard referred to as emphysema and chronic bronchitis because that's what we used to call them.
MOORE GILLAN
Indeed, that's absolutely right.
PORTER
Symptoms.
MOORE GILLAN
Breathlessness usually and in the majority of people a cough as well. Wheezing sometimes, which can sometimes be worse at different times of the day and the night. But people who've got wheezing particularly bad at night and first thing in the morning often have a rather more asthmatic component to their problems than simply the fixed and irreversible blockage, which is fundamentally what COPD is.
PORTER
Now this is principally a disease of smokers in the UK, what's actually happening to their lungs?
MOORE GILLAN
It's principally but not exclusively a disease of smokers in the UK and old fashioned air pollution did play its part as well. What happens is that the bronchial tubes are getting inflamed, they're getting scarred and they get narrowed. And in some people who've got a big component of emphysema there is damage to the spongy gas exchanging bits of the lung as well. So the lungs, instead of looking like a nice sponge, look rather like a gruyere cheese with holes in it.
PORTER
And how much damage do you have to do to your lungs before it becomes obvious?
MOORE GILLAN
Well the problem is that most of us are born with a lot of spare capacity in our lungs and if we don't want to be marathon runners or sprinters we can do a lot of damage to our lungs without actually noticing it. There's no such thing as just a smokers' cough, if a smoker has a cough that's telling you that things are going wrong and that's the time to start getting medical attention for it, to seek advice.
PORTER
Because this is an irreversible condition, there's lots that we can do to improve the symptoms but once the disease has progressed, is a fairly advanced stage particularly we can't turn the clock back, we can't give you normal lungs again.
MOORE GILLAN
No that's right I'm afraid we can't repair all the damage but it's absolutely vital therefore to identify it before too much damage is done and then stop anymore damage being done and put right those small bits of inflammation which can actually be put right.
PORTER
Stopping smoking if you're a smoker.
MOORE GILLAN
Stopping smoking if you're a smoker is absolutely the most vital thing that can be done.
PORTER
Will the disease progress after that if you do stop?
MOORE GILLAN
Interestingly if you stop smoking then however bad you've got not only will you in the short term probably improve a bit but the rate of decline of your lung function will revert to pretty much what it is most people. I'm afraid our lungs are all getting worse in all of us from about the age of 22 or 23 onwards.
PORTER
Like all the other bits.
MOORE GILLAN
All the other bits yeah. In smokers they get worse more quickly, if you stop being a smoker you tend to revert to the normal rate of decline.
PORTER
And what about treatment - how does it differ from asthma briefly?
MOORE GILLAN
A lot of it is quite similar but there are some inhaled drugs which are more effective in asthma and less effective in COPD and of course vice versa. One really important thing is that if you've never been a smoker and you've got a diagnosis of COPD the possibility is that you may just have very long term under-treated asthma, so it's very important to get the right diagnosis made and to get on to the right sort of treatment.
PORTER
Thank you for now John. While stopping smoking may be the most important self help step for most people with COPD but it's not the only one. A relatively simple two month support and exercise programme - known as COPD rehab - can make a significant difference too, as I found out when I visited Glenfield Hospital in Leicester. Dr Mike Morgan is head of the Respiratory Medicine Department.
MORGAN
One of the difficulties with COPD, with regard to developing disability, is that as you become more breathless you tend not to do the activities which make you breathless and as a result you lose your fitness and your peripheral muscles become deconditioned. Now if you can avoid that by continued activity, by pushing yourself to become breathless, it won't do you any harm if you have COPD and it will preserve your function. Unfortunately most people give in to breathlessness and become unfit and deconditioned. Our programme is six or seven weeks long and during that period they'll receive intensive exercise training and also education about their condition and how to manage it. At the end of that period most people will have benefited in terms of improving their exercise performance to the sort of level that would enable them to have a change equivalent of say being able to get out of the house, where they were unable to do so previously, perhaps going back to work, if they were close to doing that in the first place, or simply just improving the way that they can perform their daily activities.
DEACON
David's just about to start here doing his sitting and standing, which is one of the favourite exercises in pulmonary rehab. It's quite hard work. They're using two free weights here, they're using all of the momentum to get up from the chair using just the primary muscles in the top of the leg, their quads.
PORTER
David, how far into the course are you now?
DAVID
This is my last week and there's a vast improvement from week one. In distance you can say I could walk 20 yards and then stop ...
PORTER
On the flat.
DAVID
On the flat. After this 30-40 easy.
PORTER
How do you find managing things like stairs?
DAVID
Again it's helped me get back up the stairs, prior to that I couldn't get up, I used to sleep downstairs.
PORTER
Because presumably before you started on this programme if you got - because exercise made you breathless you avoided it altogether.
DAVID
Exactly, that was what it is and now this programme converts you to think otherwise.
PORTER
Dr Sarah Deacon is a specialist registrar at the hospital, and currently researching the benefits of an enhanced rehab. programme that includes training with weights.
DEACON
We've added in this study some strength training, actually doing weight lifting with handheld weights and also on multi-gym equipment to see if we can have more of an impact on this muscle weakness that they've developed.
PORTER
I'm sitting here on the leg press, you can probably hear it in the background, and before I got on it a woman I would imagine probably in her 70s got off it and I must say it's quite an impressive weight.
DEACON
Yes.
PORTER
And what extra benefit do you think using a machine like this will have over the conventional rehabilitation programme?
DEACON
Well the aim is to, as I said, improve on the muscle weakness that they've developed and this can be important in everyday tasks that they carry out which the aim of rehabilitation is to improve their quality of life.
PORTER
One of the beauties about the conventional rehabilitation programme, of course a lot of things like getting up and down from a chair and those sorts of exercises that can be done at home, but people won't have weights or multi-gyms in their house, so what happens when they finish the programme?
DEACON
When they finish the course of seven weeks we actually give them a programme to do at home, based on their walking, because that's the background of the rehabilitation is on the aerobic exercise. But we also have a system where they can fill milk bottles with water and carry on weight lifting at home.
PORTER
Sylvia Wynn has been through the seven week programme
WYNN
If I made the bed I had to do it in sections, if you know what I mean, I couldn't - I used to be out of breath just taking the sheets off the bed and things like that.
PORTER
But it must have been difficult when you were that breathless, I mean how did you manage things like shopping?
WYNN
Well with my daughter you see. I used to have a scooter in the shops.
PORTER
Now since then you've been here, you've been on the programme.
WYNN
Yes and I walk round the shops now.
PORTER
And how do you feel in yourself?
WYNN
A new woman - marvellous. I've got self-confidence in meself and everything you know so, yes.
PORTER
Okay so how long does it take you to make a bed now?
WYNN
Oh no time at all. I just don't give it a second thought, I just go and do it.
MORGAN
Pulmonary rehabilitation accepts that the damage to the lung can probably not be reversed but the damage to the peripheral musculature, in terms of deconditioning, can quite easily be reversed by physical training and other measures to improve task performance. Now rehabilitation therefore is quite a consuming process, in terms of patient time and staff time but it can have significant benefits. Unfortunately the facilities for rehabilitation in the UK particularly are very poor and we estimate that we can only offer rehabilitation to something less than 1% of people who are disabled by COPD.
PORTER
Dr Mike Morgan speaking to me at Glenfield Hospital in Leicester.
John, two themes have emerged for me, firstly that self-help, educating and supporting patients is important.
MOORE GILLAN
It's vital and the British Lung Foundation has a network of breath easy groups, helping to support people living with long term lung disease and a fantastic selection of literature which helps people with these sort of problems.
PORTER
Secondly, resources are tight in your field aren't they.
MOORE GILLAN
They really are and that last item I think really highlights it. People with lung disease, particularly COPD, it's a real postcode lottery. There's really no reason why this treatment which works, this management programme which really works for people's COPD, should not be offered. It's expensive, it's intensive but it's no more expensive than a coronary artery by-pass graft and people seem to have no difficulty getting facilities for management of heart disease.
PORTER
If I had a heart attack I would go on a cardiac rehabilitation programme wouldn't I - everyone goes on that.
MOORE GILLAN
Everyone gets one and if you have your hips replaced then you get the physiotherapy afterwards and so on. People with COPD are not getting something which can make a real difference to them.
PORTER
How can you push your area up the health agenda?
MOORE GILLAN
Do you know I think that has to come from people living with the problems, I think people are being too quiet about it. People living with long term lung diseases like COPD, with asthma and a whole vast range of other lung diseases need to say I shouldn't be having to put up with this, I should get the sort of resources and attention to my problems which people suffering from other disease groups are getting.
PORTER
That's all we have time for. Dr John Moore Gillan thank you very much.
Next week's programme is all about the therapeutic power of light - from light therapy to get rid of acne, to new uses for lasers in the treatment of cancer.
ENDS
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