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INSIDE HEALTH – Programme 5.

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TX:Ìý 17.10.17Ìý 2100–2130

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PRESENTER:Ìý MARK PORTER

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PRODUCER:Ìý ERIKA WRIGHT

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Porter

Coming up today:Ìý Dr Google – are doctors’ noses being put out of joint by patients googling their symptoms to come up with their own diagnoses?

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Lung reduction surgery – a counter–intuitive approach that could help as many as 20,000 people in the UK with breathlessness due to Chronic Obstructive Pulmonary Disease, or COPD. ÌýAnd it can have dramatic results.

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Clip – Rickman

Prior to the procedure I couldn’t do things like the ironing, it was struggling, so ironing, gardening, walking to the shops was becoming quite a struggle.Ìý I was using ambulatory oxygen for just about everything and now I only use it when I go to the gym.

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Porter

And hypermobility – being double jointed and flexible is often perceived as an asset, but for around one in 30 of the population it can be a problem and one that is often missed and mismanaged.

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Clip – Kazkaz

People can have maybe a dislocation of a knee then you do physiotherapy and they get better or some people will end up with a widespread musculoskeletal pain, upper body, lower body, spine – it could be going on for years and that’s the end of the spectrum where they might be completely deconditioned, might have multiple surgical procedures, in a wheelchair on morphine.ÌýÌý So it is a big spectrum.

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Porter

More on hypermobility later.

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But first NHS England’s plans to record the sexual orientation of everyone using the service over the age of 16. ÌýA move that has provoked plenty of debate, if the response in my surgery from both staff and our patients is anything to go by.Ìý GP Dr Margaret McCartney is in our Glasgow studio. ÌýMargaret, do you think the reporting has been accurate?

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McCartney

Yes and no.Ìý So certainly NHS England have made this an aim.Ìý They’ve said that they’re aiming for 100% compliance by April 2019 and they’ve said they’re going to pilot it first of all.Ìý They’ve also said within their guidance that we recommend that this standard is used to record sexual orientation at every face-to-face contact with the patient where no record of this data already exists.Ìý So what they’re looking for is a single recording and that should hopefully do.

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Porter

And the idea behind this is what?

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McCartney

Well in many ways it’s a very good idea.Ìý We know that lesbian, gay and bisexual people are disproportionately affected by many health issues.Ìý For example, poorer mental health, high risk of self-harm and suicide, increased risk of sexually transmitted infections, drug and alcohol use for example.Ìý And in an equitable health service you have to make sure that your services are going to the people who most need them.Ìý And if you don’t have good data to tell you whether you’re doing that or not you don’t know whether you’re getting to everyone in need.

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Porter

How do you think our patients are going to react to this?

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McCartney

Well I’ve had a look at social media and I can see a wide range of opinion.Ìý Some people are quite happy to be asked, other people would really not wished to be asked.Ìý And I think some people have very good reasons for not wanting to be asked, particularly if they’re with a relative or a friend that they don’t want to disclose their sexuality to for example.Ìý The big problem that I have with this guidance or this information standard is that it hasn’t been tested in practice, we don’t really know what is going to suit people and what’s safest for people.Ìý And the other problem is when you ask for information to be gathered, if it’s going to be done face-to-face you have to be quite sensitive of that, if it’s going to be done with a bit of paper you have to make sure that people know what that data is being used for, who’s going to be allowed to see it, what protections that information has.Ìý And you have to accept that when you ask the NHS to do more data collecting something else is going to have to stop being done in order to fit that in.

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Porter

Well that’s my concern is how appropriate this is during a time limited consultation for number one.Ìý Number two if a patient’s come in and say they’ve been recently bereaved, I’m not going to ask them what their sexual orientation is, it’s completely inappropriate.Ìý And so it’ll have to wait until another time and it might be completely inappropriate the next time too.

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McCartney

Well exactly and this is the problem I think with binary approaches, it’s exactly the same issue we had under the quality and outcomes framework where GPs were incentivised to ask patients whether or not they smoked regardless of whether it was an appropriate time and place to ask that person if they smoked and wanted help to stop smoking.Ìý We can see that some things might be a good idea but in the context of an individual consultation it might be quite insulting to be treating someone as though they were just like a factory patient willing to be processed in the same way as everyone else.Ìý And when we lose that humanity and sensitivity from consultations I think we’ve really lost the plot with the NHS.

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Porter

What about our younger patients – the 16 and 17 year olds – do we have any data to show how they might react to this?

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McCartney

No we do not.Ìý This has been untested in this age group, we don’t know how they’re going to approach that, whether it’s something they would welcome, be able to do, whether it’s the right time to ask young people as well.Ìý There are so many unanswered questions in this, I really hope there is a very robust and academic evaluation of both the benefits, the harms and the best way to get this very useful and vital information.

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Porter

Margaret, I’d also be keen to hear your take on another story that’s in the news.Ìý GPs threaten to remove patients who visit Dr Google first.Ìý Now I spotted this headline on the front page of one of the papers in the rack at the petrol station while I was filling up at the weekend and my heart sank.Ìý Have you seen this story?

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McCartney

I have, there have been headlines everywhere, I think this came from a meeting that was on at a conference of GPs recently where it was postulated that some GPs had big problems with patients googling before their appointment and then presenting their doctor with information to do something with it then.

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Porter

And how do you feel about it?

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McCartney

I use Google all the time, I love it.Ìý I think there are two big categories – people who are searching for a diagnosis and people who already have a diagnosis and want more information about their treatment or options open to them.Ìý And it’s really the first – the diagnosis issue – that I have most problem with.Ìý So I’ve got a bit of a cold just now and I googled headache, feeling tired, sore eyes and I got back as my top three diagnoses – acute sinusitis, chronic sinusitis and multiple sclerosis.Ìý Now I’m confident I don’t have any of them but you can see how anxiety can be driven.Ìý So in some ways I think googling for a diagnosis is a bit like pond dipping – you might get back something useful but then again you might not.Ìý And I suppose the problem is – and there is preliminary research that suggests this – that if you’re already feeling anxious about a condition and you go looking for information on the internet you may well find stuff on there that makes you feel worse, rather than better, and actually drives your anxiety rather than helps to reduce it.Ìý And the problem is that the more searching you do the more anxious you can become.Ìý And the problem when people then come with poor information to the GP is that that whole consultation could be spent trying to debunk poor information rather than sitting patient and doctor on the same side trying to usefully find good information to make high quality decisions.

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Porter

But then it’s our job to help put our patients right if they’ve got a misconception and to reassure them, it’s not to remove them from our list because they happen to have used Google first.Ìý I mean surely those days of the conceited doctor have long gone – I hope they have.

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McCartney

Well I really hope so and I don’t think there’s any room in medicine for people that are not willing at new information as it comes in.Ìý I think the internet has huge possibilities for putting patient and doctor on the same side and I suppose what I get worried about is when we end up in opposition because of poor quality information.

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Porter

Well we’d better gets used to it Margaret, it’s not going away.Ìý Thank you very much.Ìý And you’ll find links to more information on NHS England’s plans and the Dr Google story on Margaret’s blog, which can be accessed via the Inside Health page of the Radio 4 website.

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Clip – clinic

What I’d thought we’d do is do some bouncing work today…

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Porter

Are you, or is someone in your family, double jointed? ÌýAt least one in 30 of the adult population in the UK is thought to have a significant degree of hypermobility – meaning their joints have an unusually large range of movement. ÌýAnd only a tiny proportion of them end up in specialist physio clinics like this.

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Clip – clinic

... and I want you to just – also just feel if there’s a difference between one side of the body than the other when you do that because sometimes you might find that…

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Porter

In its mildest form hypermobility might be regarded by some as an asset that increases flexibility – helpful if you are a dancer or a gymnast.Ìý But at the other extreme, where it is caused by an underlying inherited connective tissue disorder like Ehlers Danlos Syndrome, it can be very disabling.

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What unifies both ends of this hypermobility spectrum is that the condition is often missed and/or mismanaged.

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Cath

My name is Cath.Ìý I first realised that I had joint hypermobility issues in my early 20s.Ìý Actually as a child I was very sporty, perhaps the hypermobility was helpful, I was very flexible so I was good at sports and gymnastics and didn’t have any sort of issues.Ìý And it was only when I started my first job that the hypermobility symptoms started to manifest themselves.Ìý Part of that was in my hands, I was suddenly doing an awful lot of administrative work in an office job.Ìý And at the same time I injured my knee playing sport and that seemed to be the trigger for the development of lots of other issues with different joints and feeling of weakness, combined with a lot of pain.

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Kazkaz

It is a good body type to have if you are active.

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Porter

Consultant Rheumatologist Dr Hanna Kazkaz runs the hypermobility service at University College Hospitals NHS Foundation Trust.

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Kazkaz

If we are meant to be hunting and climbing trees and picking up fruits and running around being flexible is a good thing but that means you have to be strong.Ìý And in fact I tell patients in my clinic – if you’re double jointed you have to be double strong.Ìý A phrase that I borrowed, although it does mean that certain aspects can occur or certain problems.Ìý For example, if you are flexible and you get an injury we know it takes longer to heal, for example.Ìý We know that people will describe like a shoulder popping out of its place, which could be quite painful.Ìý I have seen people where they can’t wash their hair because of that.Ìý The difficulty is if it is a sense of instability this person will go to their GP or to casualty or to rheumatologists or sometimes the orthopaedics, if you do an x-ray an x-ray will look normal.Ìý And sometimes that sort of leads to a disbelief that this person is maybe exaggerating their symptoms.Ìý They might be referred to physiotherapy, which is the right thing to do, but other times they will say – oh take a paracetamol and you’ll get better.

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Porter

What happens to these people if they go to casualty with a shoulder, it’s x-rayed, it’s normal, they’re told not to do that exercise again, if they don’t have the right input?

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Kazkaz

Believe it or not there are people who go on a regular basis to casualty with dislocations, of course casualty’s a very busy place but someone should think why this person is coming again and again with dislocations.Ìý They simply put the joint back, they might refer them to physiotherapy or they might not refer them to physiotherapy but no one seems to think why this person is coming with this issue.Ìý Dislocations normally happen with trauma, I’m talking about dislocation that happens with people reaching for the kettle.Ìý I’ve had a couple of patients recently where the kneecap simply dislocated or moved out in their sleep.Ìý So if we don’t recognise it first of all, dislocation is painful, so they might end up on very strong analgesia that doesn’t work, we have some patients where they were given the maximum dose of morphine and they become addicted to it.Ìý It’s not their fault, they were given the medication.Ìý So rather than addressing why the dislocations have occurred we are treating the pain as a result of the dislocation.Ìý So one is giving the wrong treatment, that it’s not going to work and it might make them addicted.Ìý The other one is what we call deconditioning – if you don’t address the symptoms associated with hypermobility with the right form of exercise and that’s about strengthening the muscles, improving posture, if you don’t strengthen the joints you will end up with a weaker joint and also the person will stop exercising, especially if it is lower limbs.Ìý So people will stop doing normal activity, so gradually they will lose their fitness and they end up with what we call deconditioning.

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Cath

A lot of it was sort of instability and weakness combined with a lot of pain in my hips, my knees, my back, my hands, my wrists, my ankles.Ìý What happened was I suddenly stopped playing sport and my body deconditioned very quickly.Ìý I did what a lot of people with this condition do which is to sort of go round the houses with various sort of doctors and have lots of tests and be told that you’re fine.

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Kazkaz

The problem is it’s not on our radar as doctors.

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Porter

How do you clinch the diagnosis?

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Cath

The quick tip I give to my patients and my colleagues, if you’re looking at anyone with musculoskeletal problems just ask them to stand up and most of the time you will pick up generalised hypermobility from just the way the person is standing.Ìý Because these people, especially if it’s a lower body issue, when they stand their knee goes back – so that’s hyperextension of the knees – they will see that their feet are flat and they will have an abnormal posture.Ìý So sometimes the bottom of the spine it’s curved in, so that’s an exaggerated lordosis, and the top of the spine is curved, so that is kyphosis.Ìý And to be honest by just looking at the patient, which will take 30 seconds, from the front and the back, you would have had a good idea.

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Simone

My name’s Simone and I have been hypermobile for all my life.Ìý I haven’t known about it all my life.Ìý I didn’t get a diagnosis until I was 30.Ìý I had pains in my legs when I was growing up in the night and I’d wake up crying.Ìý Nothing would stop that pain.Ìý I was always very flexible.Ìý It was a friend who actually spotted that I was hypermobile.Ìý I was sitting and she’s a physio, she saw my posture and said – you’re hypermobile.Ìý And then when I went away and researched it it explained some of the symptoms I’d had but I hadn’t considered them to be symptoms.Ìý And I then realised that my daughter was also hypermobile.Ìý Then started doing some exercises, suddenly some aches and pains went away.

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Kazkaz

So if you get them to walk you will also have an idea about their ability dynamically.Ìý If we examine, for example, in a thumb – if the person can push the thumbs all the way down to touch the forearm, if the fifth finger can go all the way beyond 90 degrees – that doesn’t take long at all, we just need to think about it.

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Actuality

...just coming down for me now.

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Simmonds

I’m Dr Jane Simmonds and I’m a physiotherapist.Ìý So I’m doing this in standing but we would often do this lying down, it’s just looking at the hyperextension behind the knee here, so going beyond 10 degrees of hyperextension.Ìý We also look at the hands.Ìý With this we extend the little finger, Cath – yeah these joints have – over time we can see here that this extending up but what’s also quite obvious with Cath’s is this laxity of the skin, so by just drawing up the skin at the back of the hand here we can see how this connective tissue is looser and potentially a little bit more fragile and that’s one of the key marker signs for not just the joints but actually that tells us something about the collagen underlying.

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Kazkaz

In the joint we have – in ever joint around the body – we have bones, we have cartilage but what people sometimes we neglect that there are ligaments.Ìý The ligaments are like thick elastic bands, they hold the bones together and they are made of a protein called collagen.Ìý So collagen makes our ligaments and of course as many people will know it is in the skin.Ìý So if the collagen is a little bit stretchy, if that makes the ligaments a little bit stretchier that’s where the hypermobility comes from.Ìý And of course depends on is it only stretchy or is it actually deficient.Ìý Because now we come to where hypermobility could be a feature of a more hereditary connective tissue disorders, such as EDS, which is Ehlers Danlos Syndromes, which are a group of inherited connective tissue disorders.Ìý And in these patients you will have a mutation causing actually abnormalities in the collagen, so it’s beyond being just stretchy, sometimes you have a complete deficiency in some collagens.

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Porter

What about the impact on the joints themselves?Ìý Are these joints that are more prone to developing arthritis later in life?

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Kazkaz

If there is a recurrent dislocation of the joint, yes, you will get early osteoarthritis and that’s where we try to prevent it.Ìý The other problem also, which unfortunately occurs, that if a joint dislocates more than maybe twice and I’ve seen people where they were offered only a couple of sessions with physiotherapy, they’ll be referred to a surgeon and they will try to tighten the ligaments.Ìý So patients will end up with multiple surgical procedures and the procedures themselves will alter the dynamics and also that will cause osteoarthritis.

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Porter

But surely an orthopaedic surgeon who’s trying to tighten the ligaments in someone’s shoulder for repeat dislocation must be thinking that there could be underlying issue with those ligaments, that this could be hypermobility?

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Kazkaz

They do comment that the ligaments are lax but the concept of hypermobility as a sort of general condition doesn’t sometimes cross people’s mind.

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Porter

I can think of quite a few of my patients that have had this very procedure done and now with the benefit of hindsight you’re wondering whether hypermobility was their problem and not their shoulder.

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Kazkaz

It is a big problem and most patients with this condition would not need a surgical procedure.

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Simmonds

Physiotherapy’s at the cornerstone of the treatment and what can happen is that when people go to see the doctor it is that they might seem to be looking well, they’re moving quite well, in fact they’re hypermobile and someone might then suggest that actually you’re okay, actually just go away and do some exercises and you’ll be fine.Ìý So then the actual getting into services there are often long waiting periods but also there’s limitations in the amount of sessions often that people can get their treatments for and they may be referred for the one single joint, so it might be the knee which has been injured, but actually it’s a whole body thing.Ìý So it’s going to take more than just a few sessions to get someone sorted.Ìý So we do have the national centres – UCLH at Stanmore, Great Ormond Street Hospital for Children – but in other centres around the country it is very difficult for people to access the expert care that they need and I think we’re relying on the charity sector to lead the way here.

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Porter

Physiotherapist Jane Simmonds and we have links to some of the patient groups working in this field on our website and to recently published guidelines on diagnosing the condition.

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You could be forgiven for thinking that the last thing someone with a breathing problem needs is smaller lungs but, counterintuitive as it may sound, lung reduction surgery is exactly what some people with COPD are now being offered at specialist centres like the Royal Brompton Hospital in London.

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Chronic Obstructive Pulmonary Disease – COPD – includes a number of different lung problems, like emphysema, that make it difficult to empty all the air out of your lungs. ÌýAnd if you can’t empty your lungs properly, you can’t take a deep breath, and so you become breathless.

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Nick Hopkinson is a Consultant Chest Physician at the Brompton.

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Hopkinson

So a normal healthy lung is made up of lots and lots of tiny air sacks and is very elastic.Ìý What happens in emphysema is that the walls of these air sacks break down and the lung becomes baggy and full of holes and floppy, so that when you breathe in the lung, particularly the emphysematous parts of the lung, fill up but when you try to breathe out, because they’re floppy, the air gets trapped.Ìý So a person with emphysema will be breathing with a lot of air in their lungs that they can’t get out.Ìý You can actually experience what it’s like to have emphysema just by taking a big breath in, right to the top of your lungs, and a little breath out and just keeping breathing at that high lung level.

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Porter

And how limiting is it to them, I mean what sort of symptoms are they complaining of by the time they come and see somebody like you?

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Hopkinson

Breathlessness, loss of energy, cough and sputum production as well.Ìý It’s quite an invisible condition because people withdraw from activities that make them breathless.Ìý Most people with COPD look absolutely fine when they’re sitting still but as soon as they start walking the typical opening comment was I can’t do anything, I’ve got no life.

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Porter

COPD is normally associated with smoking but non-smokers sometimes get it too.Ìý Penny Rickman has a rare inherited condition – alpha-1-antitrypsin deficiency – that makes her lungs more sensitive to irritants like dust and pollution.

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Rickman

From a very early age I’d always been diagnosed as being asthmatic.Ìý I was prone to chest infections, bronchitis, I was always wheezy, puffed out, I struggled at school to do sports, never did anything in the school sports days.Ìý And then as I’ve got older, 15 years ago, I was still getting chest infections, my doctor then referred me to the chest clinic.

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Porter

And how bad was the shortness of breath getting?

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Rickman

Really quite debilitating, I couldn’t do things like the ironing, it was struggling, so ironing, gardening, walking to the shops was becoming quite a struggle.Ìý Every time I got a chest infection it seemed to get worse and I was just loaded up with antibiotics and steroids.

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Hopkinson

They will often have had symptoms for 10, 15, 20 years but the breathlessness is often just attributed to the normal effects of ageing and it isn’t normal to become breathless as you get older.Ìý Often symptoms like cough are dismissed as just being a smoker’s cough, rather than a sign that there’s actually lung damage going on.Ìý So it doesn’t tend to get picked up often until it’s quite an advanced stage.

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Porter

In terms of therapies that we have for COPD what can we offer and what if any impact do they have on the course of the disease?

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Hopkinson

Most of the therapies that are available will help with the symptoms but don’t tend to actually reverse the actual process itself.Ìý I mean the most important thing for people who are still smoking is to stop smoking, which isn’t just prevention it’s actually a treatment, so would improve symptoms.Ìý Flu vaccination of course.Ìý And one of the most effective treatments is actually taking part in a sort of supervised exercise programme.Ìý It doesn’t change the lung disease but it helps them to cope with the lung disease better.Ìý In terms of medications, most patients with COPD will be taking combinations of inhalers, do make people less breathless but they don’t make the problem go away.

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Porter

Where does surgery fit into all of this?

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Hopkinson

The idea of surgery and the first attempts at doing this were actually back in the 1950s.Ìý Now if someone has got part of the lung that is very damaged, the lungs are baggy, and another part that is not damaged, what will happen when they breathe in is that the damaged part of the lung will expand at the expense of the healthy lung.Ìý So if you can get rid of that damaged part of the lung, the remaining lung can work more effectively and rather than breathing at that very high uncomfortable lung volume with a lot of trapped air the person can breathe at a more comfortable level.Ìý It was first tried in the ‘50s and at that point the surgical techniques weren’t there.

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Porter

Because it’s not a small operation, I mean back in the ‘50s it would mean opening your chest up, that was pretty major surgery, it still is today.

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Hopkinson

The difficulty was that because it was quite a big operation the surgeons were making the incisions at the front of the chest and operating on both lungs.Ìý The complications associated were quite high and people were often in hospital for a long time.Ìý What has happened since then, of course, is surgical techniques have improved so that the procedure is usually just done on one side, so targeting the single worst area of the lung and through the side of the chest it’s a much smaller incision…

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Porter

Keyhole surgery.

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Hopkinson

…yes a keyhole surgery.

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Rickman

Nick told me that I could be a suitable candidate for this lung reduction surgery but I wasn’t ill enough yet and I thought how ill do I have to be before I get to that stage.Ìý And then I suddenly got a really bad chest infection last January and I think that was the deciding factor.

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Porter

It seems an unusual concept to actually cut off or block off part of your lung when you’re struggling with having enough breathing capacity, it’s a paradox.

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Rickman

It is a bit yes.

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Hopkinson

One of the issues is that this procedure isn’t being done.Ìý People are not clear quite what the criteria are for it, they’re not quite sure how to refer for it and they think it’s much riskier than it actually is.Ìý So it is an operation on the chest in someone who’s got significant lung disease, so you need to be careful about selecting the right patients, but in general the risk of it is exaggerated.Ìý So we estimate out of that 1.3 million people in the UK with a diagnosis of COPD that up to 20,000 people might be eligible for this and about 100 procedures a year are being done.Ìý So there is a big unmet need here.

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Porter

Is this something that occurs at the end of the therapy line, is this a last resort for the most severe cases or is it something we might be using earlier?

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Hopkinson

It isn’t a last resort.Ìý If you think about the condition as mild, moderate, severe and very severe what we probably want is people with severe disease.Ìý And this is one of the problems at the moment with the sort of treatment pathways in general that there are struggles to deliver basic COPD care.Ìý At some sense in terms of priorities people say well you know we’re not even delivering the basics as well as we’d like to be.Ìý So a patient gets a diagnosis of COPD if they’re breathless they will probably be on inhalers, they may get to do pulmonary rehabilitation and then nothing very much is done often until they get to, if you like, the very late stage where this person is very, very breathless or this person now needs oxygen.Ìý There’s a window that’s been missed.

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Porter

What do you tell your patients about the likely benefits?

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Hopkinson

Having selected the sorts of patients who are likely to benefit from this, if it works and is effective it will turn the clock back two or three years, makes a huge difference in terms of what people can actually do on a day-to-day basis because in the time before we see them usually there have been one or two or three years of quite steep decline, they’re not able to look after their grandchildren, for example.Ìý One of the sort of silent tragedies of COPD lung disease is the way it impacts on people’s ability to interact with their families and promote sort of social isolation.

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Porter

What do you tell them about the risks?

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Hopkinson

Certainly say that there’s a risk of dying associated with this, so it’s about a 1% risk.Ìý So that happens – people have to be prepared to accept that that is a possibility.Ìý Sometimes people get infections, sometimes it takes time for the lung to heal up, so they need to have a chest drain in for a prolonged period of time.Ìý The remaining lung isn’t perfect it often takes time to seal.Ìý We usually say that maybe 15-20% of people will go through the operation and at the end of it all they say actually I don’t feel much better after all of this.Ìý One of the things that’s happened that’s very interesting in this area has been the development of new technologies.Ìý So because surgery was something that was thought to work but to have a lot of disadvantages because it’s an operation, the idea was that it might be possible to do the same thing to the lung but without actually doing an operation.Ìý So the major advance has been the use of what are called endobronchial valves.Ìý So if you cut that bad piece of lung out then the person will feel better but if you can block air from going to it by putting little valves into the airways that supply it it will just shrink and shrivel away and not be in the way any longer.

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Rickman

In the first two weeks I noticed that I was feeling so much better.Ìý Prior to the procedure I was using ambulatory oxygen for just about everything and now I only use it when I go to the gym.

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Porter

So from struggling when you were doing the ironing you’re now…

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Rickman

I’m a spring chicken yes.

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Porter

Penny Rickman.Ìý And there are more details on lung reduction surgery on our website.

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Just time to tell you about next week’s programme – the last in the current series – when I meet a neurosurgeon who thinks we should be doing more brain surgery on children with epilepsy. ÌýAnd statins – might new research suggesting they help fight infection in the elderly burnish their tarnished reputation? ÌýJoin me next week to find out.

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ENDS