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?