Cleft Lip and Palate
Communication with Health Professionals
Having a child born with a cleft lip/and or palate means you will be in contact with a wide range of health professionals in different healthcare settings. This contact may start prenatally (before birth) if the diagnosis is made by sonographer (person doing the ultrasound scan) during a scan and will continue throughout the ‘Cleft treatment pathway’ as your child is treated. Many different health professionals work within the U.K. cleft service: these can include clinical nurse specialists (CNS), paediatricians, cleft surgeons, speech and language therapists, clinical psychologist, orthodontists (specialist dentists who correct irregular teeth), paediatric dentists and audiologists (a specialist who works with those who have poor hearing). The amount of contact with cleft health professionals will depend on the type and severity of the cleft your child has (unilateral or bilateral cleft lip and/or palate), the way the child develops physically and socially and also the way he or she looks and speaks. In the U.K. children born with a cleft are monitored and treated within the cleft service until they reach 21, and further treatment is available throughout adulthood if necessary.
It is common for families to develop close and trusting relationships with the health professionals who look after them and these relationships can start before birth. The first point of communication is usually with the sonographer (person doing the ultrasound scan) when the diagnosis is made (usually at the 20 week scan). Some of the families we spoke to believed that the diagnosis and communication of their child’s cleft had been handled badly. For example, they were unhappy with the ‘matter of fact’ way in which sonographers broke the news to them if a cleft lip was detected during a routine scan (see ‘Diagnosis andbreaking the news’). However, it is important to understand that sonographers are not core members of the specialist cleft service and may not know very much about cleft lip and palate.
However, once a diagnosis of cleft is made, families are contacted by a Clinical Nurse Specialist (CNS; usually within 24 hours of diagnosis) who will explain what a cleft is, the issues associated with it and also how it can be treated (see also ‘Late diagnosis of cleft’). A cleft palate is not usually diagnosed before birth but if a baby is born with a cleft palate a CNS will be available to inform and support families at this time.
OK so did you find that the nurse was knowledgeable, did you find when you were on that ward that you had enough information?
Alison: I don’t think at that point they knew that much. It was hard, because I was still on the delivery ward at that point, and he’d gone to special care, so we were completely apart. So that was the hardest part. It was only the following day when we got sort of reunited then, didn’t we?
Chris: Hmm.
And at that point we obviously saw the cleft nurse, didn’t we?
Chris: Hmm, hmm.
Alison: And she explained everything. And she was, she was really good, wasn’t she? She helped a great deal.
And it was good to sort of have that contact so quickly. Because we certainly didn’t expect that, did we?
Chris: No.
Alison: But then it was completely new to us. But for her to travel over, and as soon as she knew it was a case of, “Yeah OK she’s coming straight away, she’ll talk you through everything.” And then from that point, they’d already started feeding him, but then obviously I took over. And then I came actually onto the special care ward, so then overnight I could feed him, and once I felt confident we could come home. So we weren’t on there for very long, were we? Just a couple of days, I think.
Chris: That’s right.
Alison: So yeah, it was fine. And they were really, really good.
Chris: They were really good, you know, at least you felt like you were getting the support you needed.
Alison: Yeah.
So you did feel supported?
Alison: Yeah.
Chris: Yeah, yeah.
I honestly think that they were amazing. I don’t think they could do any more. I, I think ... they just need to keep doing what they’re doing.
They make you very aware of what’s going to happen. They look after you whilst you’re going through surgery and everything.
Yeah.
And you actually kind of end up making a bit of a friendship with your cleft nurse.
Yeah, can you tell me a bit more about that?
What, about my cleft nurse?
Yeah, don’t name your nurse, but about that kind of, tell me a little bit more about that relationship. It sounds like it’s a special relationship you have.
Yeah because she gets to, he or she, I’m assuming there’s
Yeah.
they get to know your son, so they, they’ve... known about your child before they were even here.
Sure.
They meet them, they help them, you know, feed and... get through the hard times. And you, I don’t know, they’re just really great. They’re just really good: they’re really helpful, and any worries or concerns you have they just clear it straight up.
Yeah.
And you can call them any time.
What, 24 hours or?
Yeah pretty much. If they’re not... if they’re not able to take the call, somebody else will.
Yeah.
And if... their phone will be off, you can leave a message, and as soon as their phone’s on they’ll call you.
So is it just one nurse per region, per service, or are there others?
I’m not sure actually.
OK yeah.
But I know that... when the one you deal with is off, someone else that is covering her work will get back to you, so you’re never ever stuck: there’s always someone to help. Yeah, I think they’re brilliant, I really do.
A more positive approach in communicating with health professionals was experienced by most families once a child was born with a cleft. In particular, families were very satisfied with the CNS and began to develop a trusting and friendly relationship with them. Furthermore, the nurse was often seen as the most approachable member of the team, a reliable source of information who also facilitated communication between families and the multidisciplinary team (MDT).
Michael: I think it was within two days she turned up at our front door and…
Millie: Yeah and then she’d come with us while we had the scans. She listened, didn’t she really?
Michael: Yeah answered any questions we had about it.
Millie: Hmm cried, she was there.
Michael: Yeah.
Millie: She was down to earth, wasn’t she? She was brilliant, she was absolutely brilliant with it. Because she wasn’t... she didn’t talk to you like a medical professor or whatever..
Oh OK.
Millie: …professional. She talked to you like a mother and friend, didn’t she?
Michael: Hmm.
Millie: And she explained it when people explained it to me and I was like, “Don’t know what that means.”
OK so she helped interpret the medical language?
Millie: Yeah she was brilliant, wasn’t she? With, not even just with cleft base, it was things like I was scared with being a first time mum, she helped with things like that, didn’t she?
Michael: Yeah just an all-round great person.
Millie: Yeah she was brilliant, wasn’t she?
Michael: Yeah.
Millie: I mean when I had [son’s name] I mean she was there within the hour as soon as I’d given birth to him. I’d gone back down to the ward and she was there, and it was, it was such a lot of help, because I was like, “How am I going to feed him? I don’t know how to feed a baby with a cleft.” And she gave him his first feed, didn’t she?
Michael: Yeah.
Millie: She fed him for the first time.
Before any surgery takes place to begin to fix the cleft, parents will be invited to a multidisciplinary team (MDT) meeting. This meeting is where they can meet many, if not all, of the health professionals who will look after their child until he or she reaches adulthood.
The MDT meeting can be an overwhelming experience for some new parents and some felt that it was difficult to put across their point of view. They also found it difficult to see the point of a meeting to discuss treatment and other issues that could potentially be years away.
Yeah, but I was just thinking in terms of the medical profession and the health professionals, how did they help to…
Millie: We went for
…prepare you and keep you informed about…
Millie: a meeting, didn’t we?
…what they were going to do?
Millie: And there was about seven people in this room, weren’t they?
OK and who were they, those people?
Millie: There was the surgeon, the surgeon’s trainee woman, a speech therapist, a dentist, [name] our cleft nurse, and other, there were just loads of people.
Michael: Oh there was a psychological.
Millie: Yeah there was a psychologist there.
Michael: Psychologist.
OK.
Millie: And it was scary, and I don’t think they should have done it that way.
Michael: Yeah it is a bit daunting that, I suppose, yeah, obviously sat in a room full of people all
Yeah can you talk to me a bit more about that? What way did you find it difficult?
Michael: Phew obviously it’s a bit of an upsetting situation going in and... Dr [name] telling you about, you know, what they’re going to do with your son, operate on him, and this, that and that. And then you’ve got plenty of people sat round that you’ve never met before all, you know, staring at you, taking notes.
Millie: Yeah.
Michael: It’s just a bit of an uncomfortable situation.
Millie: Oh God yeah it was horrible.
Michael: Yeah you didn’t really cope.
Millie: No.
How long were you in that meeting room together for?
Millie: An hour, weren’t we, we were in about. But they were checking his mouth, weren’t they, and they made him choke. And at that point it was like ... I couldn’t do it after that.
They did what, sorry?
Millie: They were examining his mouth, weren’t they?
Michael: Yeah and he started like choking a little bit obviously with the mirror going in his mouth and having a feel around.
Millie: Hmm and I wasn’t happy at that point, was I? And then they took us to a psychologist, didn’t they? And she was asking us things like how we’re going to cope when he goes to school. And I thought it wasn’t really necessary at that point: he was three months old.
Yeah.
Millie: [laughs] It was like…
Michael: Whereas I just came out with the answers, because obviously I’ve been there and done it.
You’ve been through it, yeah.
Millie: Yeah it was, it was stupid that really, because she was, “How would you feel when he’s going to go to school?” I said, “I’ve just got his operation date; I’m not thinking about when he goes to school.”
Michael: Yeah that was…
So you’re there dealing with the here and now…
Millie: Yeah.
…and they’re talking about something that’s going to happen in five years.
Michael: Yeah it wasn’t really the greatest thing to do I suppose.
Millie: Pointless, wasn’t it really, yeah?
Michael: So I just got that one out the way straight away.
Millie: Yeah but it was, that, that was, like the speech therapist, I don’t think there needed to be that many people there…
Oh OK.
Millie: …when they didn’t need to be there. I just think it made us... a bad situation worse, didn’t it, in a sense like?
So did you feel overwhelmed?
Millie: Yeah, yeah. So he wasn’t going to be talking any time soon, so I don’t need a speech therapist, certainly didn’t need a [laughs] psychologist. It was, and a den, they had dentist there as well, didn’t they? And I thought, “You people don’t need to be here. He’s, you know, he’s three months old, he’s not speaking and he hasn’t got any teeth.” So we could have met them later on down the line, couldn’t we? It would have been a lot better for us.
OK.
Millie: It would have been a hell of a lot better. In that way we just... weren’t happy about that. I didn’t really cope with that very well, did I?
Michael: No, it was a bit of a tough day, that one.
Millie: Yeah it was a bit.
Michael: Hmm.
However, over time most families were happy to meet the health professionals who would be looking after their child and trusting relationships did develop. Families gained confidence in asking questions and they became familiar with the medical language and procedures that their child would undergo.
Many families were grateful to meet the team who will care for their child. Most parents were able to ask the questions they wanted to and felt part of the decision-making process in their childs’ care. Some families met the surgeon who would be operating on their child and said this was very reassuring.
Mark: He was great, wasn’t he? He was always there to talk to.
Becky: Yeah, yeah I think, you know, that, that was a..
Is this the surgeon?
Mark: Yeah brilliant.
Becky: Yeah very positive, somebody you can ask any questions like.
Mark: You could just talk to him.
Becky: Yeah.
Mark: Because some people you can’t which was our experience with our older son.
Yeah.
Becky: Yeah because I asked him about, you know, you could just say to him about the nose, I said, “You’ve done a fantastic job,” and it was like the nose was going to be OK. But, you know, I think it’s really important that you can say that. You know, because sometimes the medical profession, you know, you feel a bit of hierarchy, you know, that you might be criticising his surgical work. But it’s not though, you know, it was just like, “Right, what’s going to happen about that?”
OK it’s good that you felt able to say it,
Becky: Yeah.
…to speak to him about it.
Becky: Yeah, yeah definitely, yeah.
But in the stages prior to the operation did you feel that you were involved in that process, did you feel there was a dialogue with the professionals or?
Becky: Yeah I think yeah, I do. I think sort of... I suppose having a child previously and there I think, you know, you can advocate, and I think you as a parent, you know, you need to be involved in that process as well. And I think perhaps, you know, if I’m not sure about something, the type of people we are, we ask questions don’t we?
Mark: Yeah.
Becky: And I’d just say to all parents, at the end of the day you want what’s best for your child and, you know, if you need to check something out. Because I just think there’s no point in me going home and worrying about it. You know, when we found out about the heart defect it was like, OK, you know, I just got on the phone then to the teams like, you know, “Oh what does this mean? Do I?” you know, and I think, you know, you just need to, to check things.
Mark: And it is making sure you realise there is support there and you’ve got to ask if you’re unsure of anything.
Becky: Yeah.
So at what point were you put in touch with what they call a multidisciplinary team, where you have the preoperative stage of treatment?
We went to see people, it’s quite quick after they’re born: it was maybe six weeks, six or eight weeks.
OK.
I had an appointment in [place name] and there was a cleft nurse there, my cleft nurse that I see, there’s speech and language, there’s the dental team and there’s the surgeon.
Yeah, I understand you meet them all at one time?
Yeah they’re all in the same room together. So you go up, we went to [place name] it was the nearest outreach clinic to here. They have a look, they see how everything is progressing and they explain their role. So that you will see them obviously at different stages as your child grows up, so they all explain their role. The Surgeon explains everything about the surgery. And obviously if you’ve got any questions and things like that he explains exactly what’s going to be done. So it sort of puts your mind at rest; you have some sort of idea. He draws a little diagram and everything of exactly what would happen, so we could take that away.
Last reviewed June 2017.
It is common for families to develop close and trusting relationships with the health professionals who look after them and these relationships can start before birth. The first point of communication is usually with the sonographer (person doing the ultrasound scan) when the diagnosis is made (usually at the 20 week scan). Some of the families we spoke to believed that the diagnosis and communication of their child’s cleft had been handled badly. For example, they were unhappy with the ‘matter of fact’ way in which sonographers broke the news to them if a cleft lip was detected during a routine scan (see ‘Diagnosis andbreaking the news’). However, it is important to understand that sonographers are not core members of the specialist cleft service and may not know very much about cleft lip and palate.
However, once a diagnosis of cleft is made, families are contacted by a Clinical Nurse Specialist (CNS; usually within 24 hours of diagnosis) who will explain what a cleft is, the issues associated with it and also how it can be treated (see also ‘Late diagnosis of cleft’). A cleft palate is not usually diagnosed before birth but if a baby is born with a cleft palate a CNS will be available to inform and support families at this time.
Alison and Chris were visited by a Clinical Nurse Specialist after their son was born with a cleft and taken to special care. The couple found the nurse helpful and they felt well supported.
Alison and Chris were visited by a Clinical Nurse Specialist after their son was born with a cleft and taken to special care. The couple found the nurse helpful and they felt well supported.
Age at interview: 39
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Alison: I don’t think at that point they knew that much. It was hard, because I was still on the delivery ward at that point, and he’d gone to special care, so we were completely apart. So that was the hardest part. It was only the following day when we got sort of reunited then, didn’t we?
Chris: Hmm.
And at that point we obviously saw the cleft nurse, didn’t we?
Chris: Hmm, hmm.
Alison: And she explained everything. And she was, she was really good, wasn’t she? She helped a great deal.
And it was good to sort of have that contact so quickly. Because we certainly didn’t expect that, did we?
Chris: No.
Alison: But then it was completely new to us. But for her to travel over, and as soon as she knew it was a case of, “Yeah OK she’s coming straight away, she’ll talk you through everything.” And then from that point, they’d already started feeding him, but then obviously I took over. And then I came actually onto the special care ward, so then overnight I could feed him, and once I felt confident we could come home. So we weren’t on there for very long, were we? Just a couple of days, I think.
Chris: That’s right.
Alison: So yeah, it was fine. And they were really, really good.
Chris: They were really good, you know, at least you felt like you were getting the support you needed.
Alison: Yeah.
So you did feel supported?
Alison: Yeah.
Chris: Yeah, yeah.
Kerrey found communicating with her family’s CNS very easy when she was at home with her son and said they always returned telephone calls promptly.
Kerrey found communicating with her family’s CNS very easy when she was at home with her son and said they always returned telephone calls promptly.
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They make you very aware of what’s going to happen. They look after you whilst you’re going through surgery and everything.
Yeah.
And you actually kind of end up making a bit of a friendship with your cleft nurse.
Yeah, can you tell me a bit more about that?
What, about my cleft nurse?
Yeah, don’t name your nurse, but about that kind of, tell me a little bit more about that relationship. It sounds like it’s a special relationship you have.
Yeah because she gets to, he or she, I’m assuming there’s
Yeah.
they get to know your son, so they, they’ve... known about your child before they were even here.
Sure.
They meet them, they help them, you know, feed and... get through the hard times. And you, I don’t know, they’re just really great. They’re just really good: they’re really helpful, and any worries or concerns you have they just clear it straight up.
Yeah.
And you can call them any time.
What, 24 hours or?
Yeah pretty much. If they’re not... if they’re not able to take the call, somebody else will.
Yeah.
And if... their phone will be off, you can leave a message, and as soon as their phone’s on they’ll call you.
So is it just one nurse per region, per service, or are there others?
I’m not sure actually.
OK yeah.
But I know that... when the one you deal with is off, someone else that is covering her work will get back to you, so you’re never ever stuck: there’s always someone to help. Yeah, I think they’re brilliant, I really do.
Millie and Michael were visited by a CNS soon after the birth of their son. They felt very relaxed with her and she was gave their son his first feed by bottle.
Millie and Michael were visited by a CNS soon after the birth of their son. They felt very relaxed with her and she was gave their son his first feed by bottle.
Age at interview: 20
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Millie: Yeah and then she’d come with us while we had the scans. She listened, didn’t she really?
Michael: Yeah answered any questions we had about it.
Millie: Hmm cried, she was there.
Michael: Yeah.
Millie: She was down to earth, wasn’t she? She was brilliant, she was absolutely brilliant with it. Because she wasn’t... she didn’t talk to you like a medical professor or whatever..
Oh OK.
Millie: …professional. She talked to you like a mother and friend, didn’t she?
Michael: Hmm.
Millie: And she explained it when people explained it to me and I was like, “Don’t know what that means.”
OK so she helped interpret the medical language?
Millie: Yeah she was brilliant, wasn’t she? With, not even just with cleft base, it was things like I was scared with being a first time mum, she helped with things like that, didn’t she?
Michael: Yeah just an all-round great person.
Millie: Yeah she was brilliant, wasn’t she?
Michael: Yeah.
Millie: I mean when I had [son’s name] I mean she was there within the hour as soon as I’d given birth to him. I’d gone back down to the ward and she was there, and it was, it was such a lot of help, because I was like, “How am I going to feed him? I don’t know how to feed a baby with a cleft.” And she gave him his first feed, didn’t she?
Michael: Yeah.
Millie: She fed him for the first time.
The MDT meeting can be an overwhelming experience for some new parents and some felt that it was difficult to put across their point of view. They also found it difficult to see the point of a meeting to discuss treatment and other issues that could potentially be years away.
Millie and Michael felt daunted when they attended their first MDT meeting with many different health professionals discussing their sons’ future treatment.
Millie and Michael felt daunted when they attended their first MDT meeting with many different health professionals discussing their sons’ future treatment.
Age at interview: 20
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Millie: We went for
…prepare you and keep you informed about…
Millie: a meeting, didn’t we?
…what they were going to do?
Millie: And there was about seven people in this room, weren’t they?
OK and who were they, those people?
Millie: There was the surgeon, the surgeon’s trainee woman, a speech therapist, a dentist, [name] our cleft nurse, and other, there were just loads of people.
Michael: Oh there was a psychological.
Millie: Yeah there was a psychologist there.
Michael: Psychologist.
OK.
Millie: And it was scary, and I don’t think they should have done it that way.
Michael: Yeah it is a bit daunting that, I suppose, yeah, obviously sat in a room full of people all
Yeah can you talk to me a bit more about that? What way did you find it difficult?
Michael: Phew obviously it’s a bit of an upsetting situation going in and... Dr [name] telling you about, you know, what they’re going to do with your son, operate on him, and this, that and that. And then you’ve got plenty of people sat round that you’ve never met before all, you know, staring at you, taking notes.
Millie: Yeah.
Michael: It’s just a bit of an uncomfortable situation.
Millie: Oh God yeah it was horrible.
Michael: Yeah you didn’t really cope.
Millie: No.
How long were you in that meeting room together for?
Millie: An hour, weren’t we, we were in about. But they were checking his mouth, weren’t they, and they made him choke. And at that point it was like ... I couldn’t do it after that.
They did what, sorry?
Millie: They were examining his mouth, weren’t they?
Michael: Yeah and he started like choking a little bit obviously with the mirror going in his mouth and having a feel around.
Millie: Hmm and I wasn’t happy at that point, was I? And then they took us to a psychologist, didn’t they? And she was asking us things like how we’re going to cope when he goes to school. And I thought it wasn’t really necessary at that point: he was three months old.
Yeah.
Millie: [laughs] It was like…
Michael: Whereas I just came out with the answers, because obviously I’ve been there and done it.
You’ve been through it, yeah.
Millie: Yeah it was, it was stupid that really, because she was, “How would you feel when he’s going to go to school?” I said, “I’ve just got his operation date; I’m not thinking about when he goes to school.”
Michael: Yeah that was…
So you’re there dealing with the here and now…
Millie: Yeah.
…and they’re talking about something that’s going to happen in five years.
Michael: Yeah it wasn’t really the greatest thing to do I suppose.
Millie: Pointless, wasn’t it really, yeah?
Michael: So I just got that one out the way straight away.
Millie: Yeah but it was, that, that was, like the speech therapist, I don’t think there needed to be that many people there…
Oh OK.
Millie: …when they didn’t need to be there. I just think it made us... a bad situation worse, didn’t it, in a sense like?
So did you feel overwhelmed?
Millie: Yeah, yeah. So he wasn’t going to be talking any time soon, so I don’t need a speech therapist, certainly didn’t need a [laughs] psychologist. It was, and a den, they had dentist there as well, didn’t they? And I thought, “You people don’t need to be here. He’s, you know, he’s three months old, he’s not speaking and he hasn’t got any teeth.” So we could have met them later on down the line, couldn’t we? It would have been a lot better for us.
OK.
Millie: It would have been a hell of a lot better. In that way we just... weren’t happy about that. I didn’t really cope with that very well, did I?
Michael: No, it was a bit of a tough day, that one.
Millie: Yeah it was a bit.
Michael: Hmm.
Becky and Mark always felt involved in the decision making process when communicating with health professionals and felt confident in approaching their son’s surgeon.
Becky and Mark always felt involved in the decision making process when communicating with health professionals and felt confident in approaching their son’s surgeon.
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Becky: Yeah, yeah I think, you know, that, that was a..
Is this the surgeon?
Mark: Yeah brilliant.
Becky: Yeah very positive, somebody you can ask any questions like.
Mark: You could just talk to him.
Becky: Yeah.
Mark: Because some people you can’t which was our experience with our older son.
Yeah.
Becky: Yeah because I asked him about, you know, you could just say to him about the nose, I said, “You’ve done a fantastic job,” and it was like the nose was going to be OK. But, you know, I think it’s really important that you can say that. You know, because sometimes the medical profession, you know, you feel a bit of hierarchy, you know, that you might be criticising his surgical work. But it’s not though, you know, it was just like, “Right, what’s going to happen about that?”
OK it’s good that you felt able to say it,
Becky: Yeah.
…to speak to him about it.
Becky: Yeah, yeah definitely, yeah.
But in the stages prior to the operation did you feel that you were involved in that process, did you feel there was a dialogue with the professionals or?
Becky: Yeah I think yeah, I do. I think sort of... I suppose having a child previously and there I think, you know, you can advocate, and I think you as a parent, you know, you need to be involved in that process as well. And I think perhaps, you know, if I’m not sure about something, the type of people we are, we ask questions don’t we?
Mark: Yeah.
Becky: And I’d just say to all parents, at the end of the day you want what’s best for your child and, you know, if you need to check something out. Because I just think there’s no point in me going home and worrying about it. You know, when we found out about the heart defect it was like, OK, you know, I just got on the phone then to the teams like, you know, “Oh what does this mean? Do I?” you know, and I think, you know, you just need to, to check things.
Mark: And it is making sure you realise there is support there and you’ve got to ask if you’re unsure of anything.
Becky: Yeah.
When Della first met the MDT team about 8 weeks after her son was born with a cleft palate and Pierre Robin syndrome she knew what questions to ask. Having had time living with her son she knew what questions she wanted to ask the team about his treatment
When Della first met the MDT team about 8 weeks after her son was born with a cleft palate and Pierre Robin syndrome she knew what questions to ask. Having had time living with her son she knew what questions she wanted to ask the team about his treatment
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We went to see people, it’s quite quick after they’re born: it was maybe six weeks, six or eight weeks.
OK.
I had an appointment in [place name] and there was a cleft nurse there, my cleft nurse that I see, there’s speech and language, there’s the dental team and there’s the surgeon.
Yeah, I understand you meet them all at one time?
Yeah they’re all in the same room together. So you go up, we went to [place name] it was the nearest outreach clinic to here. They have a look, they see how everything is progressing and they explain their role. So that you will see them obviously at different stages as your child grows up, so they all explain their role. The Surgeon explains everything about the surgery. And obviously if you’ve got any questions and things like that he explains exactly what’s going to be done. So it sort of puts your mind at rest; you have some sort of idea. He draws a little diagram and everything of exactly what would happen, so we could take that away.
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