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  • Jan 25 / 2014
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Even The Root Canal Was 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.

 

 

  • Jan 20 / 2014
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Cool Dentist

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.

 

 

  • Jan 14 / 2014
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A Caring Dentist

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.

 

 

  • Jan 07 / 2014
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Dentists Need A Marketing Program

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.

 

 

  • Jan 07 / 2014
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Dentist Fixed Tooth Others Avoided

I finally got my bottom molar pulled after I had rescheduled the appointment three or four times. Everything just seemed wrong about the other dates, and this one seemed right. It was probably just me, but what can I say? I believe in those kinds of things. I didn’t want to do it on those days so I didn’t.

There was lots of stuff going on with me, but the tooth is out now, Dr. V was great and the whole mess didn’t cost me as much as I thought it would. So I’m very pleased.

Here’s the story: I first set up an appointment with another dentist but I think he was scared of me or something. He said it was the worst tooth he’d ever seen — and that just added to my anxiety. He made it seem like this was all going to be a big mess. I expected the worst and decided to forget it. But it had to be done, so I called Dr. V on the recommendation of a friend. That turns out to have been a very good decision.

At Dr. V’s office, he made me feel welcome and at home, and told me that the extraction wouldn’t be a problem. I came back when he asked me to and it took like 10 minutes. No swelling or pain or anything. I didn’t need much of the pain meds either. The injection was easy. There was no digging like the other guy said there would be and it couldn’t have been easier. I don’t know how the first dentist could have been so wrong.

The tooth was all eaten away under an old silver filling and that’s why it had to go. Otherwise I would have considered something like a root canal or an implant or something, but I just wanted this all out of there and the hole closed up, which Dr. V did. The tooth was actually solid and in one piece, but under there was rotten stuff on all four sides. Dr. V showed it to me, and that made me very glad it was out.

I’ve had some other medical problems lately that I won’t go into and I didn’t want to have a tooth messing up my life. I’m not in a place where I can afford to have an infection.

I took my crystals with me for courage and anxiety and they seemed to help me, but Dr. V’s attitude helped more than anything else. He’s a friendly and really outgoing guy who seems to really like what he’s doing. And he’s been doing it 20 or 30 years or something, so knows his job.

I know I’ll have to do something about replacing that tooth if I want to be able to eat correctly, but Dr. V said I can deal with that whenever I’m ready. I’m just so glad to get rid of all the rotting stuff so I can get on with my life. I have a compromised immune system and need to be really careful.

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.

  • Nov 01 / 2013
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I Like This Dentist

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.

 

  • Aug 17 / 2013
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Overcoming My Anticipation, Anxiety

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.

  • Jan 03 / 2013
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Not Afraid of the Dentist Anymore

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.

  • Jan 02 / 2013
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  • May 12 / 2014
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Botox Training For Physicians

botox demonstrationStaying youthful and beautiful forever is not only difficult, but comes with a huge price tag and a lot of sessions under the knife. Unfortunately, surgeries for maintaining your youthful skin and ageless beauty do not necessarily mean that it will be perfect and everything you had imagined it to be. Sometimes, surgeries can go awfully wrong and leave the patient with tremendous pain and agony for the rest of their lives. Thankfully, there is Botox which has proven to be the number one leading non-surgical cosmetic procedure in the United States.

Because of Botox’s non-surgical appeal to the masses, it is not surprising that Botox training has become the most important component of any cosmetic practice. In the United States, a majority of medical professionals are eligible to become certified in the Botox injection training. If you are a medical professional who would like to broaden their horizon in cosmetic procedure, then continue reading to find out about why you should take a Botox training course. Firstly, a Botox training will count towards your yearly continuing medical education (CME) credits. Secondly, completing your Botox training at the National Laser Institute’s medical aesthetics school gives you the freedom to choose training program that lasts for just a day. The more intensive training programs can range from 1 day to 12 days. If you do not wish to commit so much of your time to Botox training, then a certification program at the National Laser Institute can be completed in just about two days. Some certification programs are offered over weekends to accommodate professionals with a busy schedule and cover topics such as Botox, Dysport and dermal fillers. These short certification programs also include practical training.

Some of the other common procedures that fall next in line to Botox are, non-surgical face lifts, lip augmentations, and dermal filling procedures. In order to become a noted facial esthetic healthcare professional, you should not only consider the afore-mentioned procedures, but also possess the knowledge to a multitude of other beauty procedures as well. These procedures include, but are not limited to brow lifts, cheek bone enhancements, lip sculpting, laser skin treatments, jowls and pre-jowl Sulcus treatments etc. It is also beneficial to learn about facial spa treatments like deep cleansing, exfoliation and facial massage. Offering your patients the choice of getting treatments like light chemical peels and skin micro-dermabrasion will also add-on to your success of becoming a Facial Esthetic Healthcare Professional. Whichever procedures you end up offering at your clinic, it is always a good idea to talk to your patients about their expectations of the treatment and what they can do to make their experience less agonizing.

http://dentox.com/botox-training

Source: http://dentox.com/botox-edu-news/online-botox-injection-training-class/

  • May 05 / 2014
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Just What Oral Braces Can Achieve

burnaby orthodontistOther reasons to urge a check out to an orthodontist could consist of an accident or dental injury, or practices like nail chewing or thumb sucking. These practices are most common amongst kids. Such behaviors do not matter at first, yet could leave a long-term impression in the type of misshapen teeth. But a leading Lethbridge orthodontist could aid overcome these troubles and craft the perfect teeth. It is simple to heal an illness, if you recognize the appropriate medicine.

Stick to softer and healthier meals. If you adhere to largely soft, healthy and balanced meals during your duration of orthodontist Burnaby at a orthodontist, then you might be on track to obtain your braces off faster. Consuming hard sweet often, however, could ruin your teeth and reduce the job of your braces– then it will certainly take you longer to obtain your braces off! If your braces damage on challenging foods, then you will be set back significantly in your procedure at a orthodontist!

Filing claims can be done by the person or by the dental professional. It really depends on the plan. Most PPO or DHMO will have the dental practitioner accountable for filing case. Nevertheless, you must request for the treatments and just how easy (or tough) it is to sue to a certain insurance provider. Past clients may be able to give you some specifics.

This is truly a real truth that, in the past, most grownups prevented obtaining braces because they did not wish to have a mouth packed with metal. Having to put on metal braces for few years is not an excellent option for those which in a professional atmosphere. Today, adults can acquire braces for teeth that can scarcely be experienced by others. Invisible braces are a wonderful option for grownups that do not desire their braces to be noticeable. During existing time various personalities have likewise chosen unseen braces to use.

Oral insurance coverage is picky when it concerns burnaby orthodontist. Some plans watch it as a solely cosmetic circumstance and will decline to cover it in any way. Others will certainly cover several of the expenses. Several of it just relies on which intend you acquired into. Nevertheless, get in touch with your carrier and see just what is covered under your strategy. Occasionally, the insurance coverage will only start if an orthodontist concludes that something regarding the state of your teeth could possibly be creating problems, as opposed to simply being unfavorable from an aesthetic point of view.

Throughout the healing procedure implants could last a couple of months after surgical procedure. However, lot of people decide on for that enhancement costs undergoing anyway. Similar to any sort of various other procedures if you are interested in having oral implants, you should initially consult your dentist regarding it.

As a result, it is strongly recommended that you offer proper time for brushing your teeth twice a day. As simply cleaning alone is not sufficient to make certain that you possess a good dental hygiene. Thus, you need to take out time for dental check ups at normal periods. Regular visits to a dental clinic will certainly identify the signs of an oral illness at an early stage itself. This will certainly stay away from the discomfort and conserve your cash for the expensive dental treatments.

To include to all this, I invested at the very least six weeks in a healthcare facility for rehabilitation. I have been off job for simply about one year and ultimately lost my task because of my absence. Documented all of it looks exceptionally dramatic and essentially, and a quite long tale to listen to (forgive the pun).

  • Mar 04 / 2014
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Ask the Team P5

 

Simon van Eeden:

There are.  There’s been a lot written about scar management, but the only cream really that’s been shown to work and has a strong evidence base is silicon.  So, you can get silicon cream and silicon dressings for scarring.

A lot of people ask about Bio Oil.  As far as I am aware, there isn’t anything in relation to say that Bio Oil, for example, would improve a scar, but certainly silicon has been shown to improve scarring. It’s used widely in patients who get what is called keloid formation.  So, some people scar really adversely when they have an incision made for any kind of surgery, and silicon has been shown to be advantageous for that.

 

Could I just add a comment on the grommets discussion because it’s rather late for the person to ask the question about their grandchild?  Something new is happening here, and the NHS has its own research wing with a lot of money.  It’s got the NIHR, the National Institute for Health Research, and for the first time ever, this institute called for people to do research on cleft lip and palate.  That’s the very first time we’ve been taken seriously alongside a lot of other pediatric conditions.

They have agreed to put money into an actual study.  Initially, we’ll be working out what’s the best study to do, what are the right questions to ask, and it will involve different kinds of specialists, representatives of families that are affected. I’m hoping this will be the first of many calls like that where CLAPA and the Cleft Clinicians and a new committee that’s going to be set up will be able to nudge the NHS to invest specifically in cleft research.  So, probably the answer to whatever we’re going to be asking here will be many years down the line, but at least it has begun.

 

Hello, my name is Mrs. Jayshrie Mystery Hilt.  My question is are there any audited accounts with many different cleft teams across the regions because, you know, with the reports, there are different centers deemed, but now, they’re fewer centers?  So, does CLAPA have any information regarding which is the best center with the best outcome? 

 

Simon van Eeden:

In terms of outcomes, that’s something we’re working towards as a national group, and there’s lots of discussion around that.  We have an annual meeting every year, which is the offices of the Craniofacial Society of Great Britain Island. The results are looked at, but at the moment, they’re not yet individualized.

There are nine different cleft units across the country, and as a parent, you are entitled to access any of those services. Of course, we would always recommend that you access those within your region because then you would benefit from the holistic support.  If you’d rather leave your region, it’s very had to access those services I think, but CSAG II which is what [55:27] was talking about is now relooking at outcomes across the country.  That’s going to take a little while.

 

It’s Mark, again.  I think it’s a good question for CLAPA because going forward on, one of our key role is to provide a base to access services and how we mobilize that base of users, certainly that base of users is getting information back from the users about their perception of cleft teams is going to be quite important. 

Now, we haven’t historically done a huge amount in that area, but going forwards, I think that’s something that we need to work with the cleft teams to do and to be sensitive to the data that comes back but also make sure that we using that data to help everybody’s cause which is better service provision, people with clefts, families with clefts. 

So, I think that’s something in the long term which we see CLAPA having a role in which is using our membership base and using out network of families affected by clefts to make sure that we can go back to the cleft teams and other organizations to say that there’s more that can be done or there’s more standardization that needs to be done or there’s more things that we can do to promote research and lobby for research. 

So, watch the space on that one.  I’m not saying it’s around the corner, but if you do see surveys coming your way about services, please fill them in.  We’ll see what we can do to work with the teams in our country. 

 

Hi.  I’ve got an eight-month old baby girl.  She’s a cleft little girl, and on the diagnosis, the doctors didn’t know what they were looking for.  I had to find my own people to help me out, and I was just wondering, will you go to normal hospitals and do proper training with doctors rather than offering [57:31] any cleft baby?

 

Heather McClements:

Hi.  Was this an antenatal diagnosis that you had or after birth?

 

Antenatal diagnosis.

 

Heather McClements:

I know myself, I do a lot of antenatal work with my parents.  As soon as we know or are informed by our fetal medicine unit that there is a family that is going to have a child with a cleft, I try to make contact that same day and visit the family at a time that suits them because a lot of the parents are working and just can’t take another day of day off.

We discuss everything we can about the cleft, everything they want to know so that they’re fully prepared, and I then attend any other scans that they’ve had so we can discuss the scan and the implications from that second scan.  I then do feeding visits and more plan visits with them a few weeks before they’re due to deliver so they feel fully supported and make sure that the support there is available from the nurse specialist once your baby’s born.  So, I think a lot of work does go on.

 

Simon van Eeden:

Just to add to that, currently in our network and I’m sure across the country, we are very involved in educating locally.  So, in terms of educating the local pediatricians, the local sonographers so that they know exactly what the pathway is that if a child is diagnosed with a cleft, who do you call?  When do you call them, and what is the number and all the information.

So, we are continually trying to educate the people in the region so that you get that kind of support because I would imagine that it’s a pretty lonely place out there if you have a diagnosis and you don’t know where to turn, and that’s what we’re really trying to avoid.  So, we’re trying to make sure that you’re brought into the network as soon as possible so we’re able to take care of those needs for you.

 

I mean I was really lucky because I found my own society, and I didn’t have a clue what I was looking for.  I just did Google search.  So, I’m very, very thankful that I found CLAPA because it was me, the South, that did it.  If it wasn’t for CLAPA and it wasn’t for getting out there and doing it myself, as a first time mom, it is so, so scary. I would just like to say than you to CLAPA because I couldn’t have done it without them. 

The local hospital was rubbish. They didn’t help me, and they left me alone.  So, if it wasn’t for CLAPA, I probably would have gone down the abortion lane because I didn’t know what it was.  So, it’s just good to know that you are going out to the local hospitals and trying to do these trainings because I don’t want anyone to go through what I went through.  It was horrible.  Thank you.

 

I’m Liz Jenkins, and I’m a psychologist and a research fellow in Bristol. I’m going to be facilitating the Young Person’s Workshop later on this day. I just wanted to pick up on that point. I think the regional coordinator for the East of England has been doing great work going out and talking to parents recently.  We’ve recently put together a report with CLAPA on the needs of parents, particularly parents who’ve recently have babies who are affected. 

I think it’s clear that some services provided are really good service.  CLAPA is also providing a really good service, but with anyone particularly with a squeeze on resources, professionals at the moment, there are going to be gaps. I think we echo what other people have said that it’s really important to tell us just where those gaps are.

The recent work that CLAPA’s been doing has shown that there is a gap in understanding in some areas, and that’s something that CLAPA commits to changing in the future.  So, pushing for more societal understanding of cleft lip and palate but also teachers and other health care professionals who may not be specialist in the area.  So, I think it’s something that’s hopefully going to change, something that is coming out of talking to parents. It’s something that CLAPA can be a real advocate for in collaboration with health care professionals working in the NHS. 

So, just to really [01:01:47] that CLAPA is really listening to those sorts of experiences, and I’ve got with me a list of that report that we put together. So, if any parents or professionals would like to look at what CLAPA did or what you’re doing, I’ve got sheets in the lobby at lunch time.  So, we are listening, and hopefully moving forward on those sorts of difficulties that people are having.

 

So, I suppose I just want to add to that by adding that if you’re not happy with what you’re getting from the NHS, for god’s sake, complain.  There is a complaints procedure.  We should use it.  That’s a power we should use, and if we’re not satisfied with the response, we should take it further, approach MPs.  Yeah, it’s not what you want to do.  You’ve got enough on your plate without having to do that, but if we don’t, they will not realize that they’re not good enough.  They won’t change, and I’m sure CLAPA will support that if people are going to do that.  Yeah, some people don’t always want to complain.  Well, we never do.

 

Simon van Eeden:

We were informed that we are allowed one more question.

 

This is a very quick question.  This is for you, Simon.  What’s the predictor value of the antenatal imaging. I don’t understand.  Does it underestimate or overestimate the lip lesion and the palate?

 

Simon van Eeden:

The palate is always zero.  The palate isolated is almost zero.

 

You mean the predictor value is almost zero?

 

Simon van Eeden:

Yeah. In other words, your pickup rate for babies with isolated cleft palate is almost zero.  So the predictor value is zero.

 

That’s for the MR, is it?

 

Simon van Eeden:

Well, not all babies get MR now.  It’s an ultrasound.

 

Yeah.  Maybe you could address the ultrasound and the MR.

 

Simon van Eeden:

I don’t really know is the answer.  MRI is higher, but it would be very unusual for your baby to go for an MRI unless there was a specific medical indication.  I mean, if you have a baby that’s progressing and growing well in utero, there is no indication to do an MRI.  In terms of ultrasound cleft lip and palate, I think that is in the region of about 50%-60% and probably higher in some units. If they’re doing a 4D scan, I think they’re getting a success rate of 85%-90%.

 

If a particular baby has had an MR and the MR reportedly showed a bony defect because MR’s are not good at showing bony defects. 

 

Simon van Eeden:

They’re not that bad these days.  You can actually pick up a bony defect.

Can you?

 

Simon van Eeden:

If that’s what you’re looking for, absolutely.

 

Thank you.

 

Well, first of all, I’m sure you’d like to join me in thanking the panel for giving up their morning giving us so much information.  It’s been very interesting.  It’s lovely to hear the questions as well as the answers.  It’s extremely helpful for us at CLAPA in lots of ways.  It tells us what your information needs are, what you want to know.  It also points us in the direction of what we should be doing in the future, and very fortunately, the direction we thought we should be going in anyway which is about supporting you and getting your voice heard and making sure that you get the best possible treatment you can.

So, please use us as a resource.  Please tell us if you’ve got any problems accessing the treatment.  There’s some particular points we were talking about information, and we’re going to be doing a big review of all the information we provide which is not only information to you but also to health professionals and to the wide public.

When I talk about the survey this afternoon, one of the biggest responses was the people saying they would like to have better understanding of cleft lip and palate in society. They don’t always want to be explaining what it is, why my child looks different, which exactly reflects what you’ve been saying this morning.  So, very, very helpful for us to hear your comments, and very, very many thanks for coming along this morning. 

  • Feb 24 / 2014
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Ask the Team P4

 

I’m Sue.  I’m one of the psychologists in the Newcastle team, and I would just have to disagree with you about a lot of that if that’s okay.  It’s a question that I commonly ask to the parents when they come to the clinic.  I’ll say to them, “What experience have with cleft before, and do you know anybody that has been born with a cleft?”

If they don’t know anybody, I’ll say, “What difference does that make to you that you didn’t know? What would you like to know?” So, my experience is that people do often know something about it.  There have been things on the TV so they might have misconceptions, but I’m always surprised by how many people actually do know about cleft lip and palate.  When they take their baby out, they’ll have people come up to them and say, “Oh, such and such has got a baby like this, a baby who has a cleft as well.” So, their social experience isn’t always as negative as they might predict it to be.

 

Heather McClements:

Well, quite often, after a week or two, they will say, “Oh, the amount of people around that have got a cleft that I never knew about and the number of people that have got a cleft that I never knew about“ and the number of people that have stopped them in the supermarkets and everywhere, but before they’ve actually had that cleft child around, most of them are not really that aware of it until the baby’s here that they become so aware.  They look at the people at the shops and walking around and say, “They’ve had a cleft repair,” which they would have never done before.  It would have never have occurred to them to look at people as they shop and look at people that have had clefts.

 

I have a son who is 14.  He’s one of twins.  His brother is autistic.  He himself has a bilateral cleft palate.  He has moderate learning difficulties.  He has some ASD traits, and we have found out he’s dyslexic.  We have almost had to start again at the age of 14 because we have had so very little assessment down the education line fighting to keep speech therapy by his statement. We didn’t know exactly where he was at this time so we have spent a lot of money on private reports. 

We have been to the combine clinic at Addenbrooke’s as well but found that quite daunting. I think on reflection there, you have so many questions, but when you have so many people in front of you, as is now, it’s very difficult to actually discuss all the different concerns that you have.

We’ve looked on the internet.  We’ve typed up our bits and pieces, but we got there and haven’t got the answers that we needed.  So, I think in the future I agree that I actually passing those questions across to the team beforehand would be very helpful, and then, maybe some answers could be given to us that time around rather than to get there and the time is always limited as well.

There’s that situation, but as in getting the various assessments for Frasier we have been over to Gary Spittle.  We’ve seen Gilly Bird and her pediatric team which includes a speech therapist, and we’ve had a private independent report as well. What we are getting is different views and different thoughts and different therapies for each area so we’re actually now very confused.  One says one thing, and then one says the other.  You know, he isn’t dyspraxic.  He’s dyslexic.

So, we are confused there.  The county wanted to cut Frasier’s speech therapy to one down per half term, which is not appropriate, but my real question is at 14 years of age to grind on with speech therapy and try to get him to do it each day is not proactive. He needs something I feel which is more modern for him as in using an iPod, as in using a Bluetooth with headphones so that he is in an age that they’re going to help him mold in a way.

I’ve actually watched him in speech therapy, and it’s very hard for him.

 

Siobhan McMahon:

Hi.  Thank you.  Yeah, speech therapy can be very, very hard.  It can be a long process, and it can be really, really difficult to keep young children and people through that process.  I think that probably the only thing you can do is discuss that with the therapist that’s treating your child and try and find ways that will motivate him because you know him best.  You will have some ideas about the things that would help to motivate him and encourage him.

 

Is there any new technology out there, which there should be by now with children with clefts and speech problems?  Is there anything out there that we know?  I saw on the television the other day a gentleman.  He’d come down with Parkinson’s, and his speech was affected.  He wanted to speak at his daughter’s wedding so he was actually given headphones and something, don’t ask me what.  He could use an iPod, and it sorted it.

Now, I’m not saying that this could be the thing for clefts, but it’s the future.  It’s moving on.  It worked.  That’s what I’m looking to there.

 

Siobhan McMahon:

Yeah, there are all sorts of projects and things looking at technology and how we can use technology to help children and people.  The answer for individuals is sometimes quite hard to find.

 

It’s also very distressing to see this and watch it year in and year out but see very little evidence of moving forward, and, indeed, in many areas going backward.

 

Siobhan McMahon:

Yeah, and that’s very difficult for you.

 

We have a question online.  This one is about audiology and how it varies throughout the country.  It says, “Can you comment on the different hearing aids, and Ted, can you comment on the hearing aids and garments and things like that?”

 

Colm Madden:

We know that for children with cleft palates, they are very likely to have delivery problems.  The question that arises is how we should treat these children with glue ear hearing loss, and I think we’re moving away from an emphasis on doing grommets for these children because grommets by themselves are a more temporary measure, and we’re worried that the glue ear will come back and the children may need to have repeated sets of grommets.  The idea, really, is to try and improve the hearing until it comes to a time in a child’s life where the evidence getting clearer becomes less.

We’re moving now probably towards an idea in hearing aids.  The digital hearing aids we have available on the NHO, and I suppose that’s the main controversy and the main difficulty behind this.  We don’t know as to what is the best option for these children, but our problem is for some of these children that they may need to have repeated bits of grommets.  That by itself carries risks and carries side effects, and we are moving away from a trend inserting multiple sets of grommets, more towards observing the children, supporting them through these periods of glue ear and hoping that with time that the glue ear itself will resolve.

 

Just to follow up on that question the online audience, is that on your cleft team, or is that nationally, what’s happening?

 

Colm Madden:

I think that’s nationally a trend.  Our problem is we don’t have research that can ultimately decide which is the best way, but I think we’re getting to that sort of agreement that the best option for these children with hearing loss because of glue ear, which, again, is almost ubiquitous in children with cleft palate that the more that we intervene, particularly surgically, the more likely we are to have patients in the future.

 

Okay.  Thank you.

 

Just going back to the glue ear.  Our son’s with glue ear, and we’ve been on a watching brief so to speak.  Every 6 months, he’d have hearing tests.  He’d fail them in the winter, pass them in the summer, and it got to the point, this is like the Manchester team, a local ideology service.  They said before he was three.  Basically we were given the option.  You’ve got to kind of do something now because parents don’t come back.

So, we’ve had grommets since then, but no one actually ever said to us.  I think we’ve asked, but do these station tubes just get bigger as they grow and the glue ears subsides?  I’m still three years down the line. I  don’t know.

 

Colm Madden:

Well, there is going to be a maturation.  There is going to be improvement of these station tube function, and there is a general trend, as children get older, for these issues to go. It’s the same for all children once they have cleft palates or not.  It’s very rare for adults to get glue ear.  The reason for that being there’s a number of reasons.  It has to do with the immunity.  It has to do with the maturation of these station tubes.  It does change as the child’s head and face develop with time as you mature when the inside structures in your head get bigger.

In relation to the other point that you’re raising that parents wouldn’t cut back…

 

Yeah.  We were basically told that it’s time to do something now so we had the grommets, and it wasn’t a fabulous success.

 

Colm Madden:

Okay.  I find that, I’d be disappointed by that if somebody said that.  I think the issue really is to deal with hearing losses that’s affecting the child, but I don’t think there’s one prescription that you must have this done.  It’s really more of what you’re doing, following up the child, assessing the child, assessing how the hearing loss is affecting the child, how it’s affecting their speech, their education, all those issues, and sitting down with the parents and going through the options available and deciding which one is the best for their child.

 

I wonder if I would be allowed to make a few comments.  I’m an ear, nose, and throat surgeon and an imminent grandparent of a cleft child, and I just wanted to come back on the grommet thing a little bit because I’ve done a lot of grommets over the years one way or another.  There’s no doubt that the trend with grommets has gotten less and less and less, but that doesn’t mean that it doesn’t have a place. I think you have to be very careful about saying that grommets are out.

I think each child has to be judged on its merits because what happens to the middle ear into the Eustachian tube isn’t the same for every child.  There may be pathological changes that sort themselves out by the age of 7 or 8 in many children, and they wait and see and apply the grommets and put the hearing aid in.  That may be the appropriate course of action, but the pathology is a continuum. 

There may be other conditions that can be seen to be evolving in the middle ear, and to just say, “No, grommets are not appropriate there” is wrong. I think each case has to be judged on its merits and not to have a completely closed mind about ventilating the middle ear using grommets.

 

Colm Madden:

Yeah, I’d fully agree.  Again, it’s, as you were saying, a question of looking at the child, assessing the child, and sitting down with the parents and deciding what is the best option for the child.  Again, it can take a long time, and follow up with these children.

 

I have another very quick question from online.  A lady would like to know if there is any cream recommended to minimize scarring post-surgery and whether she can get those in the NHS or if they have to file for them.

  • Feb 17 / 2014
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Ask the Team P3

Simon van Eeden:

Well, I’m sure we’d be amenable to discussing the options.  How that would work, I’m not sure, but we can always talk about the possible options.  It’s always working on the details I think.

 

Yeah because I’m obviously a mother, and when I was doing coming up to [26:36].  It’s my biggest gripe because I know we need a nurse, but especially with the children growing up and especially in today’s society, a child psychologist is probably more important because being last for maybe the last two years, we need a child psychologist if we run into problems that could be counseling. We would have to pay for that as parents, and it’s not in today’s society that we can do that.

 

Simon van Eeden:

In your network, would you not be able to get referral to psychological services?

 

We’re tried that, but because it’s so busy and same with yourselves, you probably find it speech is one of the problems that has fallen on the priority list of funding.  There’s a child psychologist for everybody. It’s not just for clefting.

 

Simon van Eeden:

Do you want to add anything to that, Zoe?

 

Zoe Edwards:

I’m not sure how child psychology services are structured in Northern Ireland, but here, I would expect that there are CAMH services, Child, Adolescent, and Mental Health Services, in Northern Ireland in some shape or form.  As you said, there would be open to all the young people and families and therefore may have different criteria for referrals and the waiting list.

There may be specific expertise in pediatric psychology for looking at young people and families who have experience of ill health or chronic illness, but, again, you’re saying there isn’t the specific knowledge there around clefts and visible difference.  Potentially, what maybe you’re asking is if maybe someone can consult or liaise or share experiences. Obviously, that is a possibility, but in terms of getting the experience, knowledge, and link with the cleft team, I feel that my role here is working as part of a multidisciplinary team is very valuable because it allows good communication with the team and I think the best outcomes both physically and psychologically are when the team all work together.  That’s what may be lacking for the services in Northern Ireland at the moment.

 

In Northern Ireland, we had a child that we needed to refer to a psychologist, and we did approach the National Health Service and went through all the normal routes.  What we ended up with was having to pay privately for that child to get counseling. 

Now, I’m sorry. I think that’s wrong, and our funding is going to drop.  We’re not ring fenced so where do we get that money to send our children.  That’s why I’m asking, as cleft teams around the country and I know you often stick together, is there not something you can do to help with Northern Ireland or some of the others?  I know you are stretched as well, but if we discover a child who absolutely needs this, is there anything you can do for us if we need a child psychologist?

 

Zoe Edwards:

I really can’t answer the question.  I know that you know that, but the other thing to also think about is if you’re finding the statute services, I wouldn’t want to advocate that voluntary or private services are flicking the gap when the NHS should be providing what you need.  Also, think creatively about what else is out there so that the CLAPA changing services, charging for services, for example, may not be appropriate for that particular case. Obviously, I don’t know about that case.  Sometimes, those services are a weigh-in and may be able to facilitate identifying all the appropriate services.

 

Hello.  What causes cleft lip and palate?

 

Zoe Edwards:

Good question.  That’s not one for me.

 

Simon van Eeden:

In the vast majority of cases, we aren’t able to pinpoint an exact cause. We know that it’s probably a mixture of environmental factors and genetic factors.  Working together synergistically, we know that there are certain medications which are directly linked to clefting.  For example, the anti-epileptic medications.

We also know that certain environmental chemicals such as smoking, for example, can increase the risk of clefting.  Then, on the genetic side, we know certain genes have been identified where we know, for example, that you will get clefting occurring across generations, but in the vast majority of cases, there is no obvious direct cause.  That’s something, obviously, that has been looked at, and a lot of research has been done.

Closure of the facial processes which is what happens in utero is an extremely complex interaction of a number of different chemicals, genes, and tissues, and if that process is disrupted at any of those levels, then you have chance of clefting.

So, it’s extremely, extremely complex, and as I said, there is research going on at the moment that is trying to unravel that, but I don’t think we’ll ever fin a silver bullet really because you could have different factors affected and you’ll get a cleft regardless of which of those factors is affected.  You can have more than one affected at the same time.  So, it’s a very complex genetic question, and one that I think will take many years to answer.

 

Because people are saying that it comes from your parents and all that, the family background. 

 

Simon van Eeden:

Well, genetically, what you get from your parents is a blueprint for you, and you get a blueprint from your mom and a blueprint from your dad.  When they come together, it forms you.  So, you get a little bit of material from mom and a little bit of material from dad. Possibly, from that interaction together with things that might be happening outside, it might result in the formation of a cleft, but we don’t know which part of your mom or which part of your dad or which part of the factors from the outside might cause that cleft.

 

Right.

 

This is about the psychology.  Organizations like Samaritans use e-mail as part of their service.  They could be considered more cost-effective.

 

Zoe Edwards:

Telemedicine and using e-mail and telephone, the internet, and such has become, well, there’s research coming into that, and using that in psychology, I understand, is used in the Highlands in Scotland because of the distances covered in terms of face-to-face contact.  I know that Burns Services are currently looking into telemedicine, and that would include psychology.  It isn’t something that any of our services in the UK are using as far as I know, but it may be appropriate in the future.

 

Hello, I’m a parent of an adult with a cleft, and I wanted to go back to the point in the discussion earlier about who’s in the team and the approach to particularly psychology. I think it’s really important to remember that this isn’t just about and I think the point was made at the very end of that discussion, not just about NHS support and the multidisciplinary team but a kind of whole society approach.

I know that’s easy to say and hard to do, but I think that the CLAPA and Changing Faces and perhaps there are other organizations as well need to urge the government for more support to make this more of a general issue.  It’s easy to label the children as needing psychology or counseling, but some of them should be picked up as a preventative issue.

We know that children who have a cleft are going to look a bit different.  We know that society as it is, and it’s going to be tough for them in school and even as a parent of a baby, you come across that kind of funny reaction from people.  It’s not easy, and I think we need to do everything we can to make that a kind of a normal part of the support that services offer. 

So, between parents and also schools, working on schools and making sure that there’s support and tapping into the whole anti-bullying agenda because it should be a more normal thing and stop these children from getting as far as needing psychiatric support.  It shouldn’t get that far.  So, I would just urge for there to be a campaign around normalizing it.

 

Zoe Edwards:

As the psychologist on the team, I would agree that it is appropriate.  It is a bigger issue than we are looking after caring for individuals and families.  Our support often does go wider than that and just go into looking at places and its schools or wider when you people go to work.  Sometimes, issues go there, and we would go out and support those areas.  However, it is that the people who can really spread the word are CLAPA or bigger organizations like Changing Faces and the charitable organizations that do the bigger picture as it were.

One thing I would say is I hope the role of a psychologist is not the pathologize things that occur in terms of the emotional or psychological or social difficulties or challenges that sometimes children or families come across and face.  It isn’t about pathologizing that, and I hope that certainly work that way.  I hope all the psychologists in the UK would feel that it’s more about building on young people how to deal with issues as they arise.

I’m not waiting until it becomes a psychological, psychiatric illness or a mental health problem, but sometimes those issues do arise.  I do say we try to work early with families to think how they will manage as their child grows and develops as a family and how they will deal with, as you say, the difficulties and challenges that society throws at them.

 

This lady talked about normalizing the conditions.  I think that’s really an important point-of-view because from my opinion, I think cleft lip and palate is such a very common condition, if you like, and there is very little awareness on the national level about this condition. I think it’s probably easier for people to explain to other parents and for children to explain if there’s an existing level of awareness because if you have a starting point to start discussing the condition and talk about it, it does become more normal as you say.

I was interested if the team, if you know when you have parents coming to you for the first time with a diagnosis of cleft lip and palate, how many of those parents, do you know, are aware of the condition beforehand?

 

Heather McClements:

Nationally, I think, the pickup rate for the antenatal diagnosis of cleft lip is about 83%, and obviously, palates we can’t detect at all.  So, the parents who worry about their child’s speech from the palate point-of-view have had no support. One good role of your nurse specialist won’t just be feeding.  It will be lots of counseling and help from the antenatal diagnosis to hopefully prevent some of the later feelings of outsidedness and not being a part of our team because our team isn’t just us.

Our team is you and the child, and we want you to be part of our team, not “We’re the patient, they’re the team”.  We want you to be a part of our team.

 

Thank you.  What I actually wanted to know, though, was how many parents who come are aware of the condition beforehand?

 

Heather McClements:

Oh, sorry.  Not many.  I must admit.  When I speak to them or meet them antenatally or when they’re born, they say, “I’ve never come across anybody with a cleft before,” or they may have preconceived ideas of they know an adult with a cleft who maybe didn’t get quite the good repair that they do nowadays.  So, before, they’ve got a preconceived idea about how their child will look.

We do get a few that know somebody who got a cleft, but the majority of the patients have never come across clefts before and had no idea about them and never even thought that their child could have a cleft.

  • Feb 10 / 2014
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Ask the Team P2

Simon van Eeden:

I’d agree with that.

 

Hi, my name is Liz Wallace.  I’m a mother of a bilateral cleft child.  I’m also a parent contact for CLAPA.  Going back to the comfortableness of speaking to the surgeon, my most common query after a parents have been there to see the surgeon is they’re afraid to ask questions.  I mean this going to cross England and Northern Ireland. What’s your advice to me to give these parents, or as a team, how can you make it easier for these parents to ask questions?

 

Simon van Eeden:

Do you want to answer that Heather?

 

Heather McClements:

Hi.  I find that the role of the clinical nurse specialist is probably the biggest contact you’ve got between the parents and the surgeons.

 

In Northern Ireland, we don’t have a cleft nurse.  The first point of contact is the surgeon.

 

Heather McClements:

That’s true in a lot of places, and I know in Northern Ireland, they have a got a new nurse that’s coming to work in Liverpool soon. So, hopefully, that will increase. I think it’s finding somebody who you can get in contact with and you can get friendly with and be able to use them to encourage you to write things down before you come to make as much information written that when you come.

All my parents know me.  They know me well.  They come to the clinic, and I say to them afterwards, “How was clinic?” “I didn’t ask many questions because I forgot them.”  So, really, really encourage them to write them down.

 

Yeah, we do do that, but it’s still a new environment where you feel quite intimidated.  Some of the parents are well-educated, and some don’t know anything about clefts at all.  It’s even when they’re in there with their written down questions, they’re still quite intimidated.  Is there anything that the teams could produce that is in layman terms about their surgeries?  You know, people don’t understand fistulas. 

 

Heather McClements:

I think that’s another worry to look at and to develop. The role of our psychologist as well help quite a lot. I know you probably haven’t gotten any yet.

 

We don’t have a psychologist either.

 

Heather McClements:

The teams are improving.  So, eventually, we will have help for you, but for now, probably writing down is the only thing.  It’s up to us to try to make our teams less intimidating.  No matter how much I say I prepare my parents well enough for clinic, but they come out and say, “Whoo, what did…”

We try.  We discuss with them.  We ask them what they want, but even they don’t know because they want all the team there to discuss this.  When they get in there they just…

 

Well, our surgeon is so approachable.  You know, he’s known as Cress as opposed to doctor or consultant or anything, but it’s just that there are so many questions in your head.  You kind of feel that they…

 

Heather McClements:

I love when parents come back and tell us how we could make that very first appointment so much easier for them, but it’s not easy.  They’re not sure what they want, and we can’t say exactly what they want either.

 

Simon van Eeden:

Just to add to that, I think what I try and do, what we try to do as a team is at that first appointment, the lasting thought that I try to leave with the parents is that if you have any questions or you want to come into the clinic or you want to visit the ward, please contact us.

We’re more than happy to see you again to answer any questions, and the other thing I do say is, “Please. If you do come back into the clinic before the surgery, make sure you’ve written everything down because you will forget.” It’s trying to build communication really because it’s a team.  The outcome as I’m sure you’re well-aware doesn’t only come from our side.  The outcome is influenced by everyone involved in the child’s life, and the parents are absolutely critical to that relationship.

 

Hello. I have a question for the team concerning my son Darrin.  On February of this year, Darrin was complaining the food was coming down his open cleft which hasn’t been repaired.  Food was coming down his nose so we went to the dentist, and the dentist tried.  Eventually, we were put on to Manchester University again. 

We’ve been given a consultant at Manchester University a couple of months ago, and it keeps turning down.  He just keeps promising me and appointment, but the appointment isn’t made.  Darrin has [17:10].  Surgery has not been performed. How can they can they get it fitted because there’s a hole, and it’s making a vacuum in this mouth.  What’s going on with treatment for Darrin? He’s 24.

 

Simon van Eeden:

I understand what you’re saying.  I think what you really need to do is address that with the local team because obviously that’s a very personal issue with regards to Darrin.  It doesn’t really apply to cleft treatment in general, and I think it’s a very personal question that you’re asking about Darrin.  I’m sure the team will be more than happy to accommodate Darrin, but I think it’s more of a question of speaking to them directly I think.

 

Just right back to the accessibility of the cleft team.  I feel there could maybe be an issue. You get too much choice if you’re a new parent and presented with options.  Does it not make you more confused?  You want the surgeons to give you the advice rather than the other way around.

 

Simon van Eeden:

Again, I think that’s a concern.  I think everyone’s different, and one of the first things I always say. I’m speaking very personally. I’m not sure what you do, Rona, is I say, “How much do you want to know about the surgery? How much do you want to know about the variability in treatment?”

Some people say, “I want to know all the details.  I want to know the diagrams.  If you can show me pictures, that’s great.”  Other people say, “I don’t want to know any details.”  So, there’s a big spectrum, and I think that’s just a question of communicating where you’re at as far as that’s concerned, and as I said, it’s about developing a relationship.  You get a feeling of how much people want to know and how much they don’t want to know.  You don’t always get it right, but that’s what I try and do.

Rona, anything to add to that?

 

Rona:

No, I would agree with you, Simon.  I do have a comment relating to the question asked previously.  We’re in a time of hardship in the National Health Service. I think in this country, pretty much every cleft team is doing their utmost to do as much as we can for people who are involved, who have or have children with cleft lip and palate.

I shouldn’t be saying this, but I will anyway.  You need to make your voice heard. If you feel you’re not getting the sort of service that you think you should be getting then you need to be contacting people.  You need to get in touch with the PALS Department, the Patient Advisory Liaison Service, that every hospital has these days.

If it’s absolutely terrible, you need to be writing to your MPs.  We need your help in maintaining cleft lip and palate as an important service that should be cut. I would be interested to know the views of the Manchester team, whether they feel similarly, but certainly, I’m from Birmingham.  I don’t know if anybody is from the West Midlands, but to the best of my understanding, most cleft teams are being squeezed with the current squeezes that are happening to the health service. 

We truly need you. Don’t be shy of getting your voices heard if you know you’re not getting what you think you should be getting.

 

Can I just say that you can also get in touch with CLAPA, and one of the areas we really want to develop in the future is being the voice of people with cleft lip and palate and parents.  The more evidence that we get about people having problems accessing service, the more we can use that as making a case for better funding and better provision of service.  So, please do involve use if you’re having problems getting service.

 

Hi.  I’d like to agree with the comments that chap made.  When you don’t see the surgeon, I don’t want all these options. I just want someone who’s in charge to say, “We can do this.  This is fixable, and that’s it.” I think options are okay. Research is fine if your baby is diagnosed before it’s born, but I didn’t know my son had a cleft lip and palate until he was born so I only had a few weeks. 

Then, we’re seeing the whole team, and you’re just trying to keep your head up at that stage. I wouldn’t want to leave after the first appointment thinking, “Well, he’s not really sure what he’s doing about everything.” I mean, we have Mr. Davenport in Manchester.  He’s brilliant, and that was it.  We can do this, that, and the other, and that’s it.  I’d appreciate that approach, really.

 

Simon van Eeden:

Yeah, and as I said, I think there’s an individual variation.  You know, some people like to know a little bit more about what you’re doing.  By discussing different options, I hope we don’t do is put doubt into people’s minds.  I mean, technique is this is what we’re going to do, but there are other techniques around because the question arises, “Why have you done it this way and not that way?”

 

We’ve got the whole team here as well today.  There is some variation in the breadth and depth of holistic care in cleft teams across the country and across the UK.  Could you talk a little bit about the holistic approach and also what level of standardization are across the cleft teams and where the gaps are?  Of course, there are some gaps in different services across the country and also to highlight why you think those gaps are worth closing just in terms in that holistic view o patients.

 

Simon van Eeden:

Obviously, the different networks have developed differently.  Overtime, I think CSAG set out a reasonably clear roadmap on how to develop a network, but I think a lot of the issues have come down to funding, being able to fund the different specialties around the network.

I think some networks have been established longer so they have a longer time to get one in place, but I think the challenge that we certainly face are the issues regarding getting everyone into post now or of people that we don’t have on post has been hindered now by funding.

In terms of the holistic approach, basically the reason why we have the team that we do have is because we all have different expertise obviously, and it’s a shared responsibility. I think the old model, really, in years gone by, was the surgeon in the white coat.  He came in.  What he said happened, and everyone disappeared into the mists of time. I think that’s a situation which is still present in other parts of the world and in developed parts of the world.  Bill, did you want to?

 

Yes, I just wanted to agree and say in the context of this meeting with CLAPA, it’s about 10 years ago that we had this kick up and the restructuring of services.  CLAPA was a very prominent partner in that process.  It sat on all the key committees with the department of health about the levels of funding that were appropriate to meet these services, but there is a short fall. 

All of our dreams haven’t really materialized.  So, it’s very interesting that 10 years on, you know we’re currently having a total review again looking at the resourcing of teams and outcomes of care and so on.  I bet you that that’s going to conclude our gaps, and I think, again, CLAPA should be a partner with the clinicians in asking for a review for a setup of a better financial arrangement going into the future.

 

Hi, again. I’m from Northern Ireland so we have gaps with the nurse and I think we don’t have a child psychologist.  My question is for the team:  How will it be?  We’ll not get a child psychologist if funding’s not there.  We know that.  If I discover a child who needs that sort of care, how will the teams feel if I share on the resources with Northern Ireland? 

 

  • Feb 02 / 2014
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Uncategorized

Ask the Team

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.

 

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