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.