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INSIDE HEALTH

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Programme 1.

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TX:Ìý 23.09.14Ìý 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 in today’s programme:Ìý Opening up general practice, as of next week surgeries were supposed to be able to accept patients from outside their practice boundaries but if it’s such a good idea, why has the initiative been postponed until next year?

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And slim women with big legs, I will be finding out more about lipoedema, a condition that is both widely misunderstood and misdiagnosed.

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I’ve always had big legs and it’s been a family trait, certainly on the female side, my mother had big legs and so well we just accepted it, it was our lot in life.

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Porter

More from Janet later.

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Let’s start though with a story everyone was talking about over the summer while we were off air – the plight of five year old Ashya King. How did a difference of opinion between parents and doctors about how to treat a brain tumour end up in an international police hunt?

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Later in the programme I visit a hospital pioneering a new approach to preventing and managing this type of conflict.Ìý But first what rights do parents have in difficult situations like these where they don’t see eye to eye with their child’s doctor?

Professor Penney Lewis is a director of the Centre of Medical Law and Ethics at King’s College London.

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Lewis

Well most parents will have what’s called parental responsibility for their child and that means that they are the legal decision maker, so the law focuses not so much on parental rights, more on parental responsibilities towards the child.Ìý And everyone who’s making decisions on behalf of a child has to do so with the child’s welfare as their paramount consideration.Ìý So that could be the parents, it could be a medical team, or it could be the court.Ìý So what matters is what’s in this child’s best interest and usually the law assumes that parents are the best judge of their own child’s best interests.Ìý So usually parents are the decision maker and they have to decide yes we’ll go for this treatment or no actually I think maybe we’ll move the child to a different facility and have a different treatment.

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Porter

Just to be clear then if parents disagree with a planned treatment strategy they can refuse it, they can take their child away from the hospital – as Asha’s parents did – they’re perfectly within their rights to do that, it’s only if the doctors then challenge that right because they’re worried about the child’s safety that the law becomes involved?

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Lewis

That’s absolutely right, so parents can consent to or refuse any proposed medical intervention and if they refuse then the doctors can’t go ahead with that treatment unless they go to court and have the court say that that particular treatment is in the child’s best interest.Ìý So when Asha’s parents removed him from the hospital, having refused the conventional radiotherapy, they were acting within their scope of parental responsibility.Ìý The hospital were worried about Asha’s safety, they thought that there was a real risk to Asha’s safety because of the feeding tube and so they went to court and had Asha made a ward of court and what that does is it removes parental responsibility from the parents and it makes the judge into the decision maker for all aspects of the child’s life.Ìý And that remained until it was discharged by the judge a few days later after everyone had agreed that he would have proton radiotherapy in Prague.

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Porter

Does it sadden you to see cases like this end up in the courts because it means something’s gone wrong, doesn’t it, in the process further on down the line, if we have to resort to the law?

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Lewis

I think you’re right that sometimes it really does mean that there’s been a communications breakdown and that appears to be what happened in the Asha King case and I can think of other similar cases, perhaps not as dramatic as that case but certainly where there’s been a serious communication breakdown between the medical team and the parents.Ìý There are other cases where I suppose it’s more a distinction between different belief systems of the different people involved, so for instance Jehovah Witness parents who are unable to consent to a blood transfusion on behalf of their child or parents with a particular religious belief which means that they can’t agree that it’s in their child’s best interest to have treatment withdrawn as the child approaches the end of their life.Ìý Where everyone, as you say, is in agreement that the child’s best interests are key but they just have differences in view, which they can discuss civilly but they simply can’t come to a consensus.

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Porter

The Asha King got an incredible amount of publicity, it’s created a lot of discussion throughout the country, not just amongst doctors but amongst the general public as well, what lessons do you think we should learn from it?

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Lewis

Well I suppose we could learn about constructive communication and I think that alternatives to judicial proceedings are also worth considering in these circumstances, like mediation.

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Porter

Professor Penney Lewis.

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And some hospitals are being more proactive than others in using mediation to deal with conflict between parents and healthcare staff. The Evelina Resolution Project is a pioneering initiative at the Children’s Hospital at St Thomas’s in London. It has been running for two years and uses staff training and mediation to create a culture where conflicts are more likely to be recognised and resolved quickly.

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Consultant Paediatrician Esse Menson help set up the project after struggling to gain the confidence of the parents of one of her patients.

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Menson

It was about three years ago, a child was transferred to our hospital, having had difficulties at the previous hospitals where she’d been cared for.Ìý And she was a child with a complex condition.Ìý Within a few weeks of being here it became clear that communication with the family was really not going well, parents having their own views but really we weren’t feeling like we were communicating, it felt like two separate conversations that were working in parallel.Ìý And actually my main concern was that we spent less and less time looking after the child and more and more time talking about how we would try to look after the child.

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Porter

And was this because the parents weren’t keen on the approach that you were suggesting, the treatment that you had planned?

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Menson

Yes, in part, it was very clear that they’d had quite a chequered history, they’d had some difficulties at previous hospitals, they had reason to believe that things hadn’t been done correctly, they had reason to be suspicious or question the information that was been carried around their child, the history that came with the child.Ìý So on a day to day basis there were issues arising pretty much day on day.Ìý And one member of staff would say something to the family which was perhaps slightly different, worded differently or they’d be asked something that they weren’t really able to answer, so the information given wasn’t really in line with what we had said previously.Ìý And we came to a place where it felt like the family were actually trying to micro-manage the child’s care.

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Porter

In a situation like that did you feel that the parents’ intervention, I mean their natural concern, we can understand that, but was it starting to interfere with the quality of care that you were providing and the welfare of the child?

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Menson

I mean it certainly was, simply on the time basis – we were spending more time talking about it rather than doing it.Ìý Secondly, we were having to try and tailor things in a way that the family might find more acceptable and that’s not really an appropriate way to approach managing a child’s clinical case.Ìý One has to balance listening to the parents’ views, concerns, worries, previous history, opinion but also look at what the clinical evidence is and our clinical expertises and decide what the child needs.Ìý And it got to a point where I really felt having talked to consultant colleagues within the team, we work very much in a team, having explored all those options I felt we needed some outside help.

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Porter

So what did you do?

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Menson

Actually I went online, I used Google and I searched, having spoken to our ethical team, spoken to our lawyers as well and said this is a case I want to take to court, I want to find a forum in which the family can feel they’re really being listened to, they’re being given sort of equal floor, and take this forward.Ìý So I went online and found the Medical Mediation Foundation.

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Porter

It seems odd that as a consultant paediatrician, working in – I mean it can’t be the first time that you’ve come across this sort of situation – that you had to go online to find that sort of service and that it wasn’t available already in the hospital?

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Menson

I mean I have to say I was kind of surprised myself, I sat there thinking is this the right thing to do.Ìý There are structures within hospitals for exploring, discussing, considering complex cases but really we’d exhausted all of those.Ìý I asked the family whether they’d be prepared for me to discuss the case.Ìý I called Sarah Barclay who’s director of the Medical Mediation Foundation, she was travelling on the train that evening, we had a conversation about it.Ìý I think the very next day at a weekend we met and we took it from there.

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Barclay

My name’s Sarah Barclay and I’m director of the Medical Mediation Foundation and also the director of the Evelina Resolution Project.Ìý We’d just finished research that was founded by the Department of Health and the next obvious step was to pilot the use of mediation and training and see whether it worked.Ìý And so when I got the call from Esse I became involved with the initial case here.Ìý At the end of which she said that was really helpful, can we do more.Ìý So we applied together for funding from the Guys and St Thomas’s charity and we’re now in the second year of our pilot project.

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Porter

Can you give me some examples of what clinicians might be able to do better to prevent these sort of conflicts?

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Barclay

I think as a general rule health professionals are very, very good at giving information, they often feel quite constrained by time, so sometimes they’re not quite so good at listening to what parents want to say, to what the parents own agenda might be.Ìý And I think communication can often get quite strained if parents feel actually they’re not hearing what I’m trying to say, they’re just giving me information, they’re telling me what they want me to think, they’re telling me what they want me to decide.Ìý And I think that can cause a lot of tension.

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Porter

Assuming the conflict escalates and it gets to the stage where it requires mediation what’s involved?

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Barclay

What happens is that both sides, as it were, have to agree that they are happy to be involved with the process, then I would spend some time talking to the parents or whoever is involved with the family and time talking to the clinicians and health professionals involved to really get a sense of where both sides are coming from, what are the issues that they’re most concerned about, where do they think that things have broken down and why.Ìý I think from the parents’ perspective they’re being able to trust me is critical and I’d say you probably have about two or three minutes to establish trust when you walk into a room.Ìý They see that you are not there to take sides, that you’re there to really listen to what they’ve got to say.Ìý And then if it’s appropriate you would bring everybody together and help them really to have a conversation in which they’re all able to hear each other’s point of view and to try and find a way through it that everybody can live with.

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Porter

How long does this process typically take?

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Barclay

The mediation can take really anything from about two hours to much longer, to say up to seven hours, so it does take time but what you help is at the end of that, rather than you being in a situation where you’re facing a formal complaint or legal action, that everybody involved is in a situation where they can feel that they’re able to move on.

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Forbat

I am Dr Liz Forbat and I’m a reader from the University of Stirling.Ìý My role in this project has been to collect data and information about what’s going on in terms of conflict.Ìý So we’ve collected data over two 12 week periods over two years, 2013 and 2014, and we asked the clinicians to report in from all of the wards and specialties across the hospital.Ìý And what we found was that actually conflict appeared to be happening almost on a daily basis, which is a very surprising and shocking finding that this seems to be so widespread.Ìý And we don’t believe that Evelina is unique in this, we think that this is probably representative of the kind of difficulties that paediatricians are facing across the country.

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Porter

The suggestion being if you’re the first hospital to have done that that all the other hospitals in the country, paediatric hospitals, really perhaps don’t appreciate the scale of the problem.

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Forbat

I think that’s entirely right, that actually the scale of the problem is under-recognised and probably under-reported.

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Barclay

I think where there’s a conflict what you really notice is that the child is the one who becomes the victim of it.Ìý Perhaps the parents want to start avoiding certain nurses or certain doctors.Ìý The health professionals on the other side can think I haven’t got time to talk to that family today.Ìý I’ve heard health professionals say we spend less time with that family or with that child because we find the parents so difficult to talk to.Ìý And actually the person who should be at the centre of everything, the child, gets lost.

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Menson

The child’s condition fluctuated over time and actually when she became more unwell it was obviously a very stressful time for the parents and actually equally stressful for the staff, the nurses, the ward doctors who went in day on day, you could see that people were frightened to go in and talk to the family in case they felt cornered, they were asked something that they couldn’t answer or something they’d said was later kind of called back.

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Porter

What did mediation add to all of this, how did it help you?

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Menson

I think it helped enormously, I think the family really felt heard for the first time and despite our best efforts before that I don’t think they trusted that we were really listening to what they were saying.Ìý So that was a big difference.Ìý We had meetings which were actually rather more structured, appropriate time given to parents’ thoughts, concerns, feelings, notes were taken and pretty much every meeting concluded with a plan.Ìý I mean it wasn’t the panacea, things didn’t – weren’t miraculously better but it mean that we were generally moving in a forward direction rather than actually starting where it felt like we were going backwards and backwards and backwards and actually not spending enough time looking after the child herself.

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Barclay

We found, and I think if you look back at some of the high profile cases in recent years like the recent Asha King case, Neon Roberts, Charlotte Wyatt, that there are very clear signs which lead to breakdowns in communication, breakdown in communication I think is at the heart of really all of these disputes in one way or the other.Ìý Some of the most common themes will be where there’s been a history of perhaps unresolved conflicts, that those parents may have experienced in other places or for instance an error – notes going missing, perhaps drugs being given later than they should have been.Ìý So that if you’re in that stage the parents tolerance for things going wrong will be much, much lower.Ìý And I think conflicting messages as well, inconsistency of messages, particularly where you have a very complex case with multiple teams involved and all of them or many of them saying very different things and the parent in the middle saying well which one do I trust, who do I believe.

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Porter

What’s your hope going forward now?

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Barclay

I would hope that the training that we do is adopted by other hospitals because I think that if people are forewarned if you like, forearmed, that they do know there is a pattern to these conflicts, there are warning signs that you can pick up and triggers that you can identify, that that leaves teams much stronger in being able to identify when things are going wrong at an early stage and to try and do something about it.

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Porter

Sarah Barclay from The Medical Mediation Foundation. And if you would like more information on the Evelina Resolution Project there are some useful links on the Inside Health page of the Radio 4 website, go to bbc.co.uk/radio4.

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Now if you are a commuter, how would like to be able to register with a GP near your place of work so you can pop out of the office for half an hour to see him or her, instead of having to take the whole morning off to see a doctor where you live? Or perhaps you are moving house but would like to keep your existing GP because you like them but you have been told you can’t because your new house is outside their area?

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Well as of next week, relaxing of the practice boundary rules in England was meant to have allowed both. Basically you could have registered with whatever practice you wanted to. But the plans have been put on hold.Ìý Inside Health’s Margaret McCartney.

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McCartney

The idea was that people could register with general practices that would normally not be open to them.Ìý In other words the boundaries that GPs normally use to try and demarcate which patients they’ll take from which areas were basically going to be dissolved.Ìý And this had come out of this idea that people who were working couldn’t always get convenient appointments and what they wanted was a general practice close to their place of work, rather than at home.Ìý So this pilot scheme was run and was supposedly going to lead the way to the Department of Health deciding that GP boundaries were therefore mute and were no longer going to present, meaning that people could register wherever they wanted to.

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Porter

Now that change was supposed to come in at the beginning of October but has been delayed, why?

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McCartney

It has, the reason given by the Department of Health is that more time is needed to sort out what happens to patients when they become ill during hours when they’re not at work but at home and they therefore don’t have a registered general practitioner near to them.

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Porter

Well we’ll come back to that in a moment but first of all let’s hear from Professor Nick Mays, he ran the pilot that you were referring to, so who was using this service and how?

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Mays

We looked at the practices that volunteered to join the pilot, there were about 40 of them, most of them were in Westminster, so this is effectively an evaluation of what happened in Central London, which obviously is dense with commuters.Ìý About a thousand patients in the 12 months took up the offer.

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Porter

Were you surprised at that number of a thousand?

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Mays

Well what it showed if there were 40 practices was that the take up was not great.Ìý Now we found about a third said that they’d done it because it was more convenient for them, about a quarter were people who’d moved house and wanted to stay with their original practice, so it wasn’t so much shopping around and choice.Ìý A very small group, about 12-15%, had any particular dissatisfaction with their original practice.

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Porter

This was launched very enthusiastically by David Cameron himself.

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Mays

Yes I suppose he did present it as a very simple way of making the NHS more accessible, more modern but of course when you look into the detail of how it would work you have to deal with the issues which may not matter much to patients but they certainly matter in terms of the system, about who pays for what.Ìý So if I’ve got a practice near where I work, I live somewhere else, now traditionally we fund the NHS based on the resident population, so if you live in an area that’s the area that pays for your care and we chop up the money according to the needs of that area.Ìý If you have a practice where you work that’s a long way from where you live in the pilot the way that was worked was that if you were referred for a test it was the area where your practice was based that paid for it.Ìý So one of the issues in the future if you’ve got large movements of patients, say in and out of an area, is who pays when they get referred for further treatment.

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Porter

So if I’m one of those GPs in Westminster and suddenly I’ve got another 500 patients coming to see me from Gloucestershire and they all want hip replacements…

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Mays

Yeah I have to pick the bill up, yes the local funding organisation has to pick up the bill.

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Porter

Professor Nick Mays.

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Margaret, this has been postponed because there’s been concern about how to provide care for these patients near their home if they’re registered with a GP that’s close to their work, but how’s it actually going to work, what’s the plan for this?

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McCartney

I’m pretty uncertain of what the plan is to be honest Mark.Ìý The Department of Health are saying that they need more time in order to organise this which is why the start date has been moved back from October to January.Ìý But really where is this care going to come from, where are these doctors going to be that are on standby to see patients over a large area?Ìý My real concern is what’s driving this is not really about what looks like quite a nice choice for patients but actually about competition, it’s actually about one practice being pitched against another.Ìý People who are at work and who need general medical care from their GP pretty infrequently don’t tend to cost GPs very much, these tend to be the patients who we win on in balance because we spend more of our time with people with chronic illness and with multiple conditions.Ìý And over a period of time that balances out.Ìý The problem with this kind of scheme is that it makes it very easy to attract people who are pretty well and that can cause an imbalance in workloads from general practitioners and that to me is a big open door to instability.

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Porter

So what you’re suggesting is let’s use this commuter example, it’s not the only reason why people might avail themselves of these new rules but it’s probably one of the main drivers, that the commuters registering with city practices could cause instability in their practices back in the rural community – and they close effectively?

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McCartney

Absolutely and I think these are very real possibilities, I don’t think this is scaremongering, I mean we have seen practices closing.Ìý So I really would question where we’re going with this, are we going to just keep pushing the choice agenda, is that actually serving patients well, I would argue that it’s not.

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Porter

Well we’ll be keeping an eye on proceedings and no doubt talking about this again in the New Year Margaret, thank you.

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Don’t forget if there is a health issue that you would like us to look into then please do get in touch. You can email us via insidehealth@bbc.co.uk or tweet me @drmarkporter

This listener tweeted to ask if we could look into lipoedema.

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Scott

My name is Janet Scott and I’ve lived with lipoedema for most of my adult life but the sad thing is I’ve only known about it for about the past seven.Ìý I’ve always had big legs and it’s been a family trait, certainly on the female side – my mother had big legs, aunties had big legs and so did female cousins.Ìý And so well we just accepted it, it was our lot in life if you like.Ìý But at puberty my legs increased even more and being a sporty person at the time – playing hockey and suddenly you have large legs on show and you get the mick taken out of you, obviously as a teenager you become far more aware of how you look and it’s much more important.Ìý So you try and do something about it, tried dieting, I got a slim top but there was no change in the legs.Ìý So you go back and you think well if nothing’s going to change I’ll just start eating again and you get into the whole yo yo dieting of putting on weight.Ìý And then I’d been to the doctor not specifically for that but if you ever went with a bad back it was well of course you could always do with losing weight.Ìý So having dieted and not been able to do anything about my legs you start to think well it must be something else that I’m doing.Ìý So the whole self-blame and recriminations kick in.Ìý But the other thing that started to kick in was that these legs really started to feel painful, so just touching them, hitting my leg against a table leg was incredibly painful and I’d get these massive bruises.Ìý So you start to become depressed and this has all been part of it.Ìý And then one day a friend of mine said – Jan, do you think you might have this condition called lipoedema?Ìý I’ve suddenly learned about a condition seven years ago, I’m now 55, that I’ve had since puberty, so it was a heck of a shock at first to realise that something that I could actually start to take control of.

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Pilat

My name is Dirk Pilat, I’m a GP in Tower Hamlets and I have a special interest in dermatology.Ìý The classic case will be a lady in her 20s or 30s who will come to your surgery and describe that probably since her puberty she has noticed that her legs are much bigger than that of her peers.Ìý And that she’s tried dieting and that she’s tried exercise but nothing will budge the size of her thighs.Ìý And even though she has a good weight and she has a slim torso and slim arms there are still quite noticeably quite large thighs.

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Porter

And what’s actually happening here, how is this different from normal weight gain?

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Pilat

Well lipoedema is an inherited condition in which fatty tissue under the skin is being deposited in areas where they’re not supposed to be.Ìý So in this case in the lower limbs, starting at the thighs, going down to the lower legs, stopping at the feet – interesting enough hands and feet are never affected.Ìý So what you see is an abnormal amount of fatty tissue and probably interspersed with that you would have some fluid as well.

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Porter

So it’s a combination of fat in the wrong place…

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Pilat

Yes.

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Porter

… plus fluid?

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Pilat

A little bit of fluid as well.Ìý And once the disease progresses more and more fluid collects as well.Ìý It is actually quite painful.Ìý The lower joints can be quite tender, the skin itself is quite tender, these patients bruise easily and they usually tell you that if they brush against a table it actually hurts quite badly compared to other people who just brush it off.Ìý If they’re unfortunate the fatty tissue can actually enlarge and enlarge and they can have a massive globulae of fat stored on the outer sides of their hips.

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Porter

Is part of the problem here for them as well that people look at them and assume that it’s just obesity?

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Pilat

It’s not only people it’s often the health professionals as well.Ìý There are loads of stories in which women went to their doctors and were simply told they’re fat and that they should lose weight.Ìý The amount of psychological harm this can do is obviously quite devastating and there are women who have been told again and again that they have to lose weight and have been ending up in a never ending cycle of trying to lose weight and nothing’s budging.

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Porter

Does weight loss actually help?

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Pilat

Weight loss helps if you have too much weight, meaning that if the rest of you is overweight yes losing weight can help the lipoedema as well because there will be some reduction and you will be fitter and you will feel better about yourself.Ìý But once you already have a pretty low body mass index and you’re on the lower scale of your weight losing weight will not help.

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Porter

And this comes on when they’re young women?

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Pilat

I can happen after puberty, can also happen after pregnancy, so it seems to be something is happening with the hormone balance within your body and as soon as something clicks there and it seems to be travelling in families, so there’s lots of evidence that daughters of ladies with lipoedema seem to be having a similar problem.

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Porter

How common is it?

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Pilat

I’m pretty sure whatever I’m going to say now is going to be wrong.Ìý There are some papers who are quoting that only about 10% of the women referred to hospital have lipoedema but then there are studies which say that actually 11% of all women in the UK have lipoedema.Ìý So there’s a large variety.Ìý But it’s certainly underdiagnosed.

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Porter

So what can be done to help these women?

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Pilat

Traditionally we have been using manual therapies, there is something called manual lymph drainage in which literally some of the fluid that is stored between the fat is being massaged out.Ìý The patient can wear compression hosiery or compression stockings which really helps keeps some sort of shape and actually helps the patient feel fitter during the day and also seems to be reducing the pain that they’re experiencing.Ìý There is now slowly but surely some limited evidence that there are specialised surgical procedures which may help patients but the current evidence is still very much in its infancy.

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Porter

Dr Dirk Pilat.Ìý And that surgical approach, he mentioned, is a form of liposuction that is currently very difficult to get on the NHS. And be careful if you are using the internet to search for more information on lipoedema, you’re likely to come across some dubious sites. For the ones we’ve vetted, check out the links on the Inside Health page of the Radio 4 website.

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Just time to tell you about next week when I will be exploring the murky world of NHS continuing health care, who will pay for your care if you have ongoing complex health problems and live in your own house or in a care home? The NHS? Social Services? Or you? And who decides who gets what? Join me next week to find out.

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ENDS