Do you have any advice for the health professionals at all, the medical team, is there anything you feel which could be done better or

No I think they are just

things which have been good?

For me everything was perfect, and I think they are just wonderful people and they are doing brilliant things with babies. And, as I read somewhere, they are doing this that the nature fails to do, so they are just brilliant and wonderful people. I mean they are repairing something that the nature fails to do very well.

They are finishing the job, so to speak?

They are finishing the job brilliantly, so nothing to worry about, and nothing to improve, in my opinion. I just had a wonderful experience with the [name] Cleft Team and I hope

And the literature which was given to you, was it..

Yeah absolutely.

the written literature, was that good?

Yes, yes everything was absolutely perfect, all the leaflets and the information was absolutely enough. And I just hope that we could take the good example from UK and transfer it to Bulgaria. I hope in Bulgaria we will have such wonderful teams and… one day maybe I hope so, the children there will receive such a high level of professional help like here.

Diane: No. I mean our… the sonographer was, you know, they, you know, she did her job: she detected it and she passed us on to a consultant. But I think it was the consultant that, that didn’t have… the consultant there that did the

Andy: Didn’t have the people skills.

Diane: Scan, they didn’t have the, they didn’t have, yeah, they didn’t have the people skills and they didn’t have the… I don’t think they had… you know, all the, the information either, to be able to say. You know, to be reeling off, Oh it could have this, could have that, could have, you know, is not very helpful for anybody.

Andy: I think especially if you are delivering and you’re doing that kind of job, surely, you know, it’s like an electrician turning around and telling what a plumber’s job is when they haven’t… it’s not the same thing. You know, if you’ve got the very basic skills you’re not going to deliver that… what’s really needed at the time.

Yeah sure.

Andy: So I think that… yeah, that system needs to be maybe altered….In terms of level of care, support, whatever, I think, you know, I think it’s been really, really good.

Did you feel empowered to ask the questions you wanted to ask as well?

Andy: Until we

Diane: In terms of when we were put in touch with the cleft team definitely, because they were very open to all your questions and could pretty much answer.

Andy: Hmm.

So at what level was the communication easiest? At what level of health professional, was it the nursing level, the?

Andy: I think the specialist nurses, I think.

Diane: Specialist nurses, yeah.

Andy: Definitely.

Diane: You know, they were always there, weren’t they, and?

Andy: They were the ones who’d got answers basically to everything and they were the ones that dealt with it first-hand and like, you know… you know, hundreds and hundreds, thousands of, you know, children so

So they were actually quite a mediator between you and the higher level of consultant

Andy: Yeah.

Diane: Yeah.

would you say?

Andy: Yeah absolutely, yeah.

Diane: And if you’ve got any worries or, you know, any queries about… anything, you contact them and they’ll put you in contact with the… get you an appointment with the right team and the right person and the surgeon if you need to so

Andy: They’re on the doorstep if you want them as well.

As a health professional yourself, how have you found that communication and the way information is imparted etc., and do you feel involved in decision making?

Yeah mostly. So ENT doctors, you know, some of those have been a bit disappointing. And the doctors very early on that made the diagnosis didn’t do it in a very helpful way.

In what way was it not helpful?

They… I think they were a bit overly dramatic with the kind of… the one in ten chance of there being a bigger problem. And also like when they kind of had to take Maisie away to kind of, to look at the palate, and because I’d had the caesarean I couldn’t go with them. So [husband’s name] went with them, and he was very sensible and said to them, you know, What are the long-term implications of this? And they said, Well none. It’s all stuff that a child grows out of.

Yeah.

And [husband’s name] said, Well when you go back in and talk to my wife, you know, will you please make sure that’s the first thing you say to her? and they didn’t. There was no apparent thinking for the fact that this was my baby; it wasn’t just an interesting medical… scenario for them.

Yeah it’s a real person.

So, yeah, so that… that really could have been handled a lot more sensitively. And I think that would have… made quite a big difference actually to how I coped with hearing the news and… sort of… yeah, what that day was like for me really. But on the whole I think… we kind of feel like weve met a lot of amazing health professionals. Speech therapists have been consistently amazing. And the cleft team always been, you know, very knowledgeable, very supportive. And I think, you know, having worked in the NHS and seen areas where things are really kind of underfunded and delivered on a shoestring, I’ve been really impressed that the system feels really robust.

OK hmm.

And things like the hearing tests and the speech therapy assessments just kind of automatically being in place.

So is there a sense of continuity then?

Yeah, and I’ve never had to go to the GP or the health visitor and say, I’m a bit worried about Maisies speech, or, I’m a bit worried about this. It’s all been anticipated and it’s been… it’s been monitored.

So you haven’t had to prompt yourself so much?

No.

OK that’s interesting, yeah.

So that’s, yeah, that’s been really comforting… and sort of yeah to kind of… it makes you feel quite well held, rather than, you know, this is… a scenario that no one knows what to do with or… it’s kind of, yeah, it’s like it’s all taken seriously and kind of

So it’s given you some confidence?

given what I need. Yeah, yeah absolutely.

So reflecting on your own experience, what kind of lessons do you think could be learned from having a late diagnosis?

I think any… health personnel needs to be aware that there are other reasons why a baby might not be able to feed. And in some areas a mouth check is not included as a postnatal check. They do all the other checks, check hearts, livers, hips, you know, check the baby’s head, but they don’t actually look inside the mouth in all hospitals, which I don’t know why. But it’s now part of the foetal anomaly screening that they’ll check for a cleft lip, but you can’t check for a cleft palate. They will, if there is a cleft lip there, they may say the palate might be involved, so they do it about 20 weeks.

So they’re still only looking for the visible?

They’re still only looking for the visible. But I think it’s very hard to see a cleft palate. I’m not sure whether they can find them at 4D scan either. But if… if there is a problem with feeding, why isn’t the mouth looked inside straight away?

It’s bizarre.

When I think back, yeah, when I think back I was given, you know, Keep trying. Try a breast pump, express and well feed the baby for you. You’re not doing it right. The baby is lazy. The baby is still sleepy from anaesthetic, so all those things, and all it could have been, you know, was a quick look in the mouth. But I will say, from my last talk that I did, I met one of the midwives who helped look after me in hospital, and she actually says, If I ever see a baby with milk all over their face again making a clicking sound, I’m going to look inside their mouth straight away. So just from her looking after me for one four hour shift, or six hour shift, shes now more cleft aware. And then I think of one other midwife, who had been a midwife for 26 years, and only ever delivered one cleft baby in 26 years. So that’s

That’s the level, yeah?

That’s the level, yeah. And some of the midwives only work part-time, some only work evenings, do the night shift.

That’s true yeah.

So they have no, they have no opportunity. Which is why, when [daughter’s name] was born, I didn’t mind whoever came to look inside her mouth to have a look to see what one was. And the same with health visitors: they have the other issue where they’re not allowed to examine a baby but they can advise. So they can’t look inside a baby’s mouth, but if their mother says, I’m having problems with feeding, they can suggest maybe get an appointment with the doctor and get the doctor to look inside the mouth.

And in your experience, how aware are GPs?

My GP was very good. She was quite aware of it. And another GP, when I took [daughter’s name] for just a random appointment, had actually looked up Stickler syndrome on the internet so he was ready for us when we turned up.

Oh OK.

So there are, there are, you know, some GPs are very, very interested in what’s going on, and learning new things. And the same with health visitors: I’ve had very good responses from them too.

And so nationally what kind of level of care would you like to see?

I just think I would like all midwives to be told to look inside a baby’s mouth as part of a postnatal check. Because I think if a mother is having problems feeding it’s not just the fact that they don’t know what they’re doing, it could be something else. So it’s being more aware of that, I think. Because I think late diagnosis is something that I… I was touched by, and I know other families have been touched by it where they’ve had to… they’ve waited longer than 24 hours to be diagnosed.

Yeah.

And everybody, you know, all nurses should be taught to have the right equipment there. Because when [daughter’s name] was diagnosed the only torch they had was in a DIY kit. They didn’t even have a hand torch to have a look in the baby’s mouth.

OK so

So just having a little a kit there ready with, you know, mirrors, tongue depressors, and being shown how to look inside a baby’s mouth properly.

People do need to really be made of aware of it. It needs to be covered in everything, because even as a nursery nurse I’d never seen one case of a cleft.

You didn’t, no?

No. And I know

It’s not in their training?

No it’s not. It, it, obviously… they can’t cover everything, because if they covered everything then you’d be there for years studying. But… there just needs to be some… awareness about it.

It sounds like the health visitors and midwives were not aware as well, in your case?

No, because the health visitor who I have actually has practised for 23 years.

23 years hmm.

And… were the first cleft case shes dealt with [laughs] so that’s just quite scary actually to think about… how far and wide it’s not

So would you say there was a need to include it in, make it a?

Maybe not officially, but maybe offer the training help, because I think that would benefit… a lot of people who don’t actually know what it is and know what we go through leading up to the operation and dealing with a child with a cleft, because it is different to looking after a baby without a cleft, because of the feeding.

Yeah.

Especially if it’s a second or third baby, you’d know the difference.

Sure.

I’ve… I was approached as well by one of the cleft team asking that when, because they go round and speak to midwives, if I would be… OK to go round and speak and tell them my, my part of the story. Which, yep, I definitely want to do because I feel… I feel like… that I was really, really let down by the professionals, and I feel like it’s a point I have to raise so that it doesn’t happen again….So… yeah so I’ll be looking to do that as well, speak to professionals about it and just raise awareness within them, especially for new, new midwives and things coming through.

Hmm so do you think that it’s common that midwives lack relevant information about cleft, do you know if that’s a common thing or is it?

Well it’s not common for them to for all the professionals, it’s not common for my son’s age to be missed.

Yeah.

Usually they can detect cleft in scans, and also as soon as they’re born, babies, their mouth is checked before they leave the hospital. So that’s something that doesn’t… I know that, I think they told me it was one in 700 babies that were born with a cleft. So most, in fact all the people that I speak to, and all the information that there is available, is geared towards babies. None… which obviously means that it’s more unusual that children my son’s age don’t get recognised before that. But still, I still feel like, as first time mums, with concerns that you have, that they should be listened to a bit more because I feel like you know your baby better than anyone. And maybe just a bit more information about things like cleft.

OK do you have any advice for health professionals, is there anything you see wrong in the services you’ve had, anything you think could be improved?

Sometimes they definitely need to like talk to the children more that are like… I know the parents need to know but… they often like just don’t explain it well to children, so that will be one thing.

OK in what way do they not explain?

Or like they’ll use like too long words and like you’re an 8 year old kid: you wouldn’t know what they’re talking about then.

So too much medical jargon?

Yeah.

OK I was just wondering if you had any kind of advice for health professionals and the way they deal with people with clefts at all.

…Oh yeah.

Do you think things can be done differently in any way?

You kind of explain to them what’s going on, and kind of what the plan is and… yeah that’s kind of, that’s kind of it really: you just need to make sure they know what’s going on.

What, the patient?

The patient, yeah, make sure the patient knows what’s going on.

So being open with communication?

Yeah, yeah don’t kind of… don’t kind of just discuss things with their parents: make sure they’re involved in those conversations as well. Like because that’s… because that’s what well I shouldn’t really call them my team, but yeah that’s what… that’s what my team did: I was always there for the conversations and kind of knew everything as they knew it, which was… good. But if I hadn’t known those things I’d be a lot more uncertain about it.

What sort of engagement have you had with the team?

With the braces, I just sort of… accepted it as just part of the treatment. When it came to the surgery, my surgeons I always remember sort of said, Well this is what we would like to do, you know, and these are the kind of results that we think we can get. And, you know, I think it was more like… just sort of saying, OK that’s, that’s absolutely fine. It wasn’t until my sort of… last couple of operations that people, that my surgeons actually said, Well… what do you think?

Would you like to go through this? Would you like to have more surgery? Wouldn’t you? You know, it was just sort of expected that I would sort of say yes.

OK so there was an assumption that you would go through?

Yeah, and I mean I, I’m glad I did. But it wasn’t… from my recollection it was only like the last couple of ops that I actually had where people actually started asking for my personal input, you know, What do you think? Do you want to have this? Do you not want to have this?

And how old were you then?

I had my first nose op when I was 21.

OK yeah.

So I was an adult.

OK yeah.

And yeah I mean it was… it was strange. It was… it was nice being asked for my opinion on what I like and what I, what I didn’t want. I still said yes, and I’m glad I did. But it wasn’t until I sort of got to my 20s that people actually asked me, you know, for my input.

Is there anything you would recommend which would help health professionals communicate with their patients?

I think it’s really important to check out what services there are. I mean I didn’t know about the psychologist until later, later on.

Yeah.

And… actually, you know, if I had an issue now I could go to them and they could communicate the issue for me, which would make it a lot easier than me waiting half a year for an appointment and everything else.

Yeah. Is that so they could act as a kind of a mediator, is that what you’re saying?

Yeah.

OK yeah.

So actually I think that’s something really important to check out. And… yeah, I’d say that’s the best route to do things, from my experience anyway [laughs].