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.

I wasn’t looking forward to my first visit to the dentist because I already knew what was wrong. I needed a root canal. I knew it. I had had one before and it was terrible, but someone else did that. Before I could get there, the tooth broke. The pain was the worst I’ve ever had with anything. My insurance was still good even though I was leaving my job, so I was pleased that he would see my right away instead of waiting for my appointment. I did need a root canal, but it was actually okay. I cried in the waiting room because I was so worried, but he’s a good guy and made me feel at ease. He was genuinely upset that I was so upset and waited until I calmed down to start. He stabilized everything right away and gave me something to take care of the pain. I have a crown now and it’s all okay. He’s a good guy I’ll see every time now.

I’m not very cool so I don’t know if cool is the right word, but my dentist is cool to me. I don’t know how long he had to go to school to be a dentist, but he doesn’t look down on me like so many professionals do. He’s close to my age and considers me a peer. I like that.

We do the same things and have some of the same hobbies, so that’s cool too. He’s gotten me interested in reading some stuff that I never thought I’d like and we talk about it now every time I’m in. I even see him at a restaurant once in a while and he’s friendly and nice there.

So I’m basically a friend of my dentist. I never thought that would happen. For a while, I though he especially liked me, but I know a couple of his other patients and I just think he’s a nice guy. He seems to be.

He’s my only friend that I let prod on me and pick at my teeth, but other than that he’s just a regular friendly guy that I like being around.

My childhood dental health was all messed up by a bad dentist who really hurt my mouth. For 7 or 8 years after that, I wouldn’t go to a dentist of any kind. About eight years ago, I started to see some funny marks on my teeth and got a small chip on a front tooth in the bottom. So I had to go back to the dentist. I chose Dr V because of his reputation for gentleness, compassion and treating people like a whole person instead of just a mouth. When I got there, he talked to me like a real person, explained what I needed, gave me options and made me feel like he cared. I’ve been seeing him 8 years now and he has had to do a lot for me because I waited so long to come see him. I moved out of San Diego about four years, but I come back to the area every four or five months and see him during my visits if I need to. Let me tell you: I had to visit someone else in my new hometown of Las Vegas because it was an emergency, and I hated it. I let her do what I had to have done and never went again. I’m going to try to never go to anyone else but Dr V as long as he’s in business.

Why doesn’t someone do some marketing for dentists? Everyone thinks terrible things about them. When I say I’m going to the dentist, people saw awful things — but they just aren’t true about my dentist. They tell me I’ll be miserable for days, but I actually like going to see all the people. They’re very fun people.

When I was in college I didn’t go the dentist. Then there was a lot to be fixed after that. Then I got busy and stopped going again. Finally, I discovered the dentist was just about the only place that would let me lay down in the middle of the day and do nothing! So I started going to the dentist, found I needed a lot of work again and set about getting it done.

This dentist is very laid back, casual and it is sort of like going for a pedicure or manicure. You feel pampered when you leave instead of all beaten up. There might be some discomfort, but it’s worth it for a healthy and comfortable smile.

The dentist promises that he can show me how to keep my remaining teeth healthy and he said that I only have one or two other small problems that need fillings. So if I’m lucky, I won’t have to have another extraction. But if anything at all happens to my teeth, this is the dentist that will get to fix them.

I had known my old dentist all my life, but he died suddenly only like three weeks before I was supposed to go back for some work. The old dentist was very patient and kind. I ran all over that place when I was a kid and he didn’t care. He used to talk all the time and tell long, interesting stories. So I always liked going to the dentist. But I had heard most were more business-like. But I wanted to watch movies and read magazines in the lobby and stuff. My denist is really a lot like the guy I remember from a few years ago. He’s just nice. He’s kind and friendly, like the one I used to know. I used to like going to the dentist instead of going to school. Now I guess I can start going to the dentist instead of going to work.

My anticipation anxiety has been pretty bad recently, so I took a half-dose of my usual tranquilizer before my aunt drove me to my appointment with my dentist. And then I sat down. And the anxiety kicked in. I sort of laid down across the chairs in the waiting room before I was called back. My aunt said it was only about six minutes.

So I sat in the dental chair and told him which tooth was causing me problems. He actually listened to me and put me at ease. I’m not even sure the tranquiller was necessary, but I get so worried that things are going to go wrong everywhere I go.

He explained that I needed a filling and that he could do it right away. Once I agreed, he rubbed a painkiller on my gums, then I didn’t even feel the needle as it went it. I wish I hadn’t seen it either because needles make me feel weird, but I looked over at the wrong time.

Anyway, I felt a little twitch in my eye, but he and the nurse explained that this happens in a certain percentage of patients. Okay. No big deal. The nurse even said that I did really well with the injection. That made me feel kinda silly because I’m an adult and shouldn’t need to be told that, but I liked it. She was being maternal, I think.

I don’t really like drills. Needles are okay, I guess, but drills really bother me. But my dentist uses a special kind of drill that doesn’t make as much noise and doesn’t get as hot. That helped a little. All that really bothered me was spraying cold water on my teeth, but that’s because I’m hypersensitive to cold. I told them that and they changed the way they did things so I felt less of the cold water.

I had a little swelling in my jaw and my eyelid was a bit numb, but I sat in the waiting room for a little while and everything went back to normal or almost normal. My aunt took me home and I was fine within two or three hours.

I guess I’m a little more nervous than most, but even though I had the complication with the eye and the swelling, there was never any real pain or discomfort. I guess I’m a wimp and am complaining to much, but I want you to understand that I like my dentist and how nice he and everyone were to me.

When I need to go to the dentist again he’s the one I’ll go to. He’s a lot better than anyone else I’ve been to, and maybe I’ll get over some of my fears and issues before I have to go back.

I’ll probably still take the tranquilizer next time, but maybe I’ll only take a quarter of it. It depends on how I feel that day. The more I confront things that bother me, the better I feel. And my tooth hasn’t hurt at all after I had the deep filling. So I’m happy with this experience.

I know I’m an idiot, but I didn’t go see a dentist for a really long time. And I paid for that. I had to have an abscess treated at the emergency room late last year and had to stay in the hospital overnight. That cost more than anything I saved by not going to a dentist.

The ER people told me I needed a lot of dental work. It was a lot more than I thought it would be, but probably not as bad as it could have been. I need to have my wisdom teeth out too.

I found a great dental clinic. Even the first cleaning worried me because it had been so long, but I was completely relaxed within a few minutes. The hygenist was great and so was the dentist. They were both a lot more gentle than I expected. They went out of their way to be gentle. They asked me what I don’t like about dentists and I told them it was the fear of the unknown. I guess that’s right.

I started treatment last week and had four teeth restored. I had NO pain and just a very little bit of discomfort. I tried to fall asleep twice while they were working on me. They said that was OK if I wanted to. At least I got over being nervous. I like having a plan.

Everybody I know has a dental horror story, but none of them are Dr V’s patients. I sometimes wonder if the people who make it sound so bad even go to the dentist.

It’s not an ordeal or a problem in any way. I didn’t like the injection, but even that wasn’t as bad as when I was a kid. And within a day, the pain in the 4 teeth he worked on so long was all gone.

So I learned that dentists aren’t bad. I don’t want to ever spend a night in a hospital again, so I’m not going to mess up again. I’ve stopped telling my friends I’m getting my teeth fixed because I don’t want to hear their horror stories. They’re just not true for me.

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