see the video: http://vimeo.com/29036348

Simon van Eeden:

Thank you very much for inviting us to be here today.  It’s going to be an informal session really which is going to be driven by you in terms of questions and answers, but before we get into that, I think it’s important that we want to introduce ourselves so you know where we’re from and what discipline we’ll be trying to cover.

My name is Simon van Eeden. I’m sure you can hear from the accent that I’m originally from South Africa.  I’ve been in the UK for 10 years now, and I am a surgeon working in the Liverpool part of the service and was a clinical director of the network.

Jeanette Mooney:

Hello, everybody.  My name Jeanette Mooney.  I’m the dental therapist working in the Manchester part of the team, and I’m very keen on promoting dental health and organization provision of dental care if you need it.

Zoe Edwards:

Good morning.  I am Zoe Edwards, and I am one of the clinical psychologists who works with the network.  I work specifically with the Alder Hey team, and I’m working in [01:13] and Lancashire.

Colm Madden:

Good morning.  I’m Colm Madden, a consultant in audiovestibular medicine. I specialize in children with hearing imbalance problems, and I work here as part of the Manchester team.

Siobhan McMahon:

Good morning, everybody.  My name’s Siobhan McMahon.  I’m a speech and language therapist, and I work with the Liverpool part of the Northwest, Northwestern network.

Heather McClements:

Good morning.  I’m Heather McClements. I am the cleft lip and palate nurse specialist based at Alder Hey in Liverpool. I also cover Manchester, Liverpool, [01:51], and I see your babies first.

Joyce Russell:

Good morning.  I am Joyce Russell. I’m a consultant orthodontist based in Alder Hey but also cover the Northwest part of the network as well.

Simon van Eeden:

Any questions?

There were a couple of questions, I think, that were put on by CLAPA which came through to us.  So, I’m not sure whether you want me to address or us to address any of those.

Yeah.  We had a few submit those before, and some of them are aware with the idea that their child had a certain treatment and their friend’s child with the same problem had a different treatment. They’re wondering why it varied from place to place or from child to chil.

Simon van Eeden:

Well, I think in terms of the surgical treatment for children born with cleft, there is a wide variation in protocols that exist across the world.  If you look at the recent study that was done in Europe, there were something like 201 teams with different protocols in terms of closing clefts, and there are a lot of certain different lip insertions.  I can show you different slides, actually, which might make it a little bit easier for you.

So, if you look at the repair of just a unilateral cleft and palate, as I said, there were 201 teams, 17 possible sequences, 194 different protocols, and the number of operations used to close, for example, a unilateral cleft of the lip and palate can vary from one to four different operations.  So, some teams will close the cleft all in one, and some teams will take four different operations to close.

So, there’s wide variations, and I think one of the reasons why there’s so much wide variation is because there’s poor evidence out there with regards to clefting.  I think the evidence is getting better.  People like [03:45] are involved in setting up multi-centere trials, but, in the past, because numbers of cleft patients are quite low it’s very difficult to get robust evidence to support one technique above another.

So, what tends to happen with cleft training is that you would tend to learn the technique that you were trained in, but as I said, what’s happening now across the world and especially in the UK now after CSAG, the techniques that we tend to use are very similar if not the same across different units.  We’ve tried to standardize what we do surgically, and in so doing, we’ll be able to follow up those adults and have a better idea as to what works and what doesn’t work.

Brian Sommerland, down at Great Ormond Street, has been a fantastic ambassador for cleft lip and palate, and he was recently able to follow 20 of his UCLP, unilateral cleft lip and palate, patients for 20 years and was able to show the technique he was using, for example, has very good results and is comparable to some of the best published in the world.

So, in terms of differences of why people do things, I think if you go into the internet, you’ll see if you go into the US sites, you’ll see there’s many different ways of either closing the lip or closing the palate, even closing the hard palate when you do the timing. The main reason for that as I said is because there isn’t robust evidence for one technique above another, but the evidence is getting better.

Does that answer the question?

Thank you.  Hi.  I have a son who’s six who was born with a bilateral cleft lip and palate. My question to you, a surgeon, is when parents come to you, is it your responsibility, do you think, to say about the different types of techniques that are available, or is it very much what you offer at your center?  For example, with bilateral clefts, I know you can have operations like, for example, two to close the gap in the gums, or you can just do it in one.  There’s quite a variation within the UK itself, and I was just wondering what your feeling was about the information that you feel you would personally give people.

Simon van Eeden:

I think that’s a really good question.  I mean, if you have a child with a bilateral, you know that there is a huge amount of variation, and that’s something that we’re working very hard to get uniformity across the UK.  We’re hoping to start a trial quite soon with regards to bilateral.  There’s a working group at the moment amongst the surgeons to look at the bilaterals.

Personally, if a patient comes to me with a bilateral, I would explain to them.  I would try to explain the technique about using the reason, for using that technique. I’m more than happy to discuss what I see are the pros and cons of different techniques, and I think, ultimately, it’s very difficult to make an informed choice as a parent as you know because you’re involved with a child.

So, you’re relying on what we, as professionals, have to say, and unfortunately with bilateral, the evidence is even less robust than with unilaterals.  So, I think a lot of it is based on anecdotal evidence, and in terms of what has worked in the past I think.

Just to put it up there, I mean when you first have a child with a cleft, you naturally don’t understand if there are different options available.  So, I suppose the question is is it the parent’s responsibility to find the different options, or would you say there are different options available as a surgeon?

Simon van Eeden:

I think as a network we always, we would be as informative as possible, and that is to go as far as to say that there are lots of different units around the country.  The reason why we think the service that we offer would be best for your child is A, B, and C, but you’re welcome to get other opinions, and there are other opinions out there. If you want any information regarding it, we’d be happy to share it.

Simon, can I just follow up that point?  In terms of the surgery and the different ways that the surgery can be approached by different teams and different surgeons, is that common across treatments outside of clefts?  Is it common on knee surgery or back surgery or whatever it is, or is it more varied in clefts than other types of surgery?

Simon van Eeden:

I think you’ve got variation of techniques. I can’t really speak out of my specialty, but certainly, if I think of oral and maxillofacial surgery, if you’re doing, for example, jaw moving surgery, for example, I think the techniques that we would use, there are lots of different ways of cutting the bone, for example, but you would probably cut the bone more or less in the same area to achieve the same sort of result. There is some variation.

I think what makes cleft unique is the relatively small number of patients. Over the last 100 years, there have been so many different techniques described, and, often, what happens is if you look at the literature, people will published before the child the child has grown fully.  So, they do a technique and say, “This is a great technique because of this.” There might be five patients in the cohort, and they publish when the child is five rather than waiting for the growth to be finished and step back and say, “Is this really a good technique or not?”

As I said, people almost eulogize about their technique.  If you go to different units around the world, which I’ve done, it’s almost a god-like thing.  This is the primary surgeon, and this is the only technique you can do because it’s the technique that worked, but the evidence behind it isn’t necessarily that robust.  We’re getting better, I think. Would you agree with that?

Yes, I would. I think surgeons today are more aware of some certainty in methods and are much more willing to take part in comparisons of treatment.  With us in the past, I guess when I was starting off, the surgeon just made up his mind and in a god-like manner stuck to that from that day onwards, but now there’s much more willingness to accept that there’s uncertainty and to share that with patients enhances the various new trials that are running.  After surgeons take the first step, they seem to find it easier and easier with patients that they’re not really sure either, and why don’t you take part in this study that will find out for the next generation of patients?

The other important thing of course is if techniques are getting similar results, then I know you would agree that you might as well go for the one that causes the least fuss and bother and difficulty and so forth.  So, it won’t just be selecting what’s best in some technical outcome but what’s easiest for the patient and family.

Sorry, that was a surgeon who reminded me.

Well, as another cleft surgeon, sorry I’ve come into this a little bit late. I agree with everything that’s been said before. I think there are lots of things that we don’t know, but I also think that when you’re discussing it as a family with the surgeon, I agree with Simon. I’m very happy to say that there are different ways of doing it, but the person who’s doing our child’s operation needs to be confident and familiar with what they’re doing. 

So, I think it’s fair to say and I don’t know if you disagree with me, but you get to know a technique well. You know what works in your hands.  So, you might know that there’s no evidence behind it to say that that technique is necessarily better than the one that your colleague is doing down the corridor, but you do have an idea, when you’ve been doing it for a while, about what your results look like. 

So, that comfortableness for the family also needs to be comfortableness for the surgeon, and that might mean that family might want to go to a different surgeon to get a different approach.  That’s okay.