A-Z

Cleft Lip and Palate

Impact of cleft clinic appointments

The care of a child born with a cleft lip and/or palate will be co-ordinated through one of 9 regional specialist cleft service units in the U.K. and the Republic of Ireland. Depending on where you live in the U.K. you may have to travel some distance in order to attend clinical and surgical appointments (see ‘Cleft treatment pathway’). An independent survey of regional cleft services in the U.K. found that most families using the service lived within a one hour drive of the clinic. There may be regular appointments for monthly speech and language therapy (SALT), or they may be less frequent appointments with the multidisciplinary team or individual appointments with, for example, an audiologist, orthodontist and psychologist. There may also be more intense periods of clinic appointments with the MDT in preparation for surgery such as lip or palate closure or orthognathic surgery. Different appointments may take place in different hospitals but the cleft teams are very flexible with appointments and work closely with families to minimise the impact on family life.
 

Michelle was able to visit local clinic for her son’s regular appointments for speech and language therapy, audiology and orthodontics.

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Age at interview: 33
Sex: Female
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In our area we have three hospitals that we can choose from.

And the hospital that I had [son’s name] in is the hospital that we’ve chosen to have... the orthodontic care. ...But another hospital that’s in our area is the hospital that provides the speech and language therapy and the hearing tests.

And then the operations come from a completely different hospital in a completely different area. So ...I don’t know whether in the future that will cause problems on the basis that we’re not using the same orthodontist as maybe other people in this area are using. 

Oh yeah, it’s fine for the local ones, not a problem. But the one that’s quite far away, it’s a good couple of hours.

OK.

And when most of the appointments seem to be at 9 o’clock in the morning it’s yeah, it can be a bit of a rush [laughs].

That must be quite difficult, yeah.

Yeah ... but I think most people end up having to travel quite far, don’t they? I think there’s only really certain centres that do... 
Some of the regional cleft centres have ‘outreach’ clinics where specialists such as orthodontists, surgeons, speech and language therapists and psychologists travel to smaller clinics or hospitals in more remote areas. Some regional cleft centres provide accommodation for parents to stay with their child overnight following their surgery, but this can be restricted to one parent per child. 
 

Alison and Chris explain how the family manage clinic appointments for their son who was born with a cleft.

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Age at interview: 39
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Alison: I’ve still got that worry as to what I’m going to do with the little one. Because we have been told that on the day of the operation I’m obviously allowed there, and I will stay with him and sleep over, dad can come whenever he wants to, but his siblings can only visit certain times. So of course that is another implication down the line, the case of well we are that distance away from the hospital.

And you can’t leave your kids at home.

Alison: Exactly, and that was my issue with the school: I can’t sort of be in two places at once, I can’t leave her in school and then think, “Am I going to get back in time to collect her from school?” And I can’t leave before she goes to school and say, “Oh just make your own way, sweetheart, don’t worry about it.” It doesn’t... it doesn’t make sense.

Chris: I mean they go, “Oh we’ve got after school clubs,” and stuff like that.

Alison: But that just adds to the expense doesn’t it?

Chris: Well that’s the thing, isn’t it? It’s alright if you can afford it, but by the time we’ve done that a few times it’s suddenly [laughs].

Alison: Hmm.

Chris: it could be a very expensive, you know.

Alison: Hmm.

Yeah I think, from talking to other families, the appointments is a major point of concern.

Alison: Hmm.

One, the time, the logistics of getting there, and the cost also…

Alison: It’s not been quite so bad for us because, appointment-wise, certainly since we’ve come up here, when we were seeing the consultants down in the Midlands before we moved, they knew how far we had to come, so they always made us the first appointment of the afternoon in the clinic.

So they’d take that into consideration?

Alison: Absolutely. And here it’s been, I mean he has an appointment next week, for example, to refit this new brace, and they’ve said that although his appointment’s on Tuesday, if they can get the brace made quicker, can they ring us and can we go in sooner? And I’ve said, yeah that’s not a problem, provided we can have flexibility on the time of the appointment. Because provided I can be there sort of between half past ten and one, that’s fine, because the little one’s not affected.

Yeah.

Alison: But if they, I mean we did have a first appointment at like nine o’clock in the morning, which we soon learnt that that was just a no go. But they have been really good, and they will, you know, make the appointments around you if they possibly can. Obviously there is a bit of an issue because we’ve only got one car, so it’s still the case of have to drop my husband off to get a lift to work, or I have to drive him to work first then come back. But you sort of get used to that, that’s…

So there’s a lot of planning involved, yeah.

Alison: Yeah but, to be fair, that’s not just because of him having a cleft, that’s just... you know, life with children isn’t it? There’s always something somewhere.

Chris: Yeah.

Modern family life.

Alison: Yeah exactly, you work round everything. So I certainly wouldn’t, wouldn’t say it’s been an issue for us.
The families we spoke to found that getting to clinic and hospital appointments was one of the more challenging aspects of having a child born with a cleft lip and/or palate. The reality of clinic visits means that families may have to rely on support from friends and other family members to look after any other children. Parents also need to take time off work to attend appointments. This may mean taking unpaid or annual leave, a process which is much easier if one has a sympathetic and understanding employer. In order to attend clinic appointments children will need to miss school lessons: while they may consider this to be a good thing it may impact on their educational development. Parents also told us that the hassles involved with attending clinic sessions with their children sometimes put a strain on their relationships. 
 

Andy was fortunate that his employer was able to grant leave to get to his son’s appointments with Diane. However, ultimately it impacted on the family’s holiday time.

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Age at interview: 36
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Andy: Yeah it’s a big impact, yeah.

Diane: Yeah it was hard, yeah it was hard.

Andy: And it’s like, yeah.

Diane: And like you say especially, you know, constant appointments and things, and you having to take time off work.

Andy: Yeah.

And how accommodating are your employers?

Andy: I think quite honestly they’re... they’re very accommodating. You know, I think, to be honest with you, if I was probably in a different role in a different job, I don’t know how much. Because it’s things like surgery, if it’s planned it’s not classed as like dependency leave or compassionate leave or whatever.

It falls in a gap doesn’t it?

Andy: Yeah, you have to take that as holiday. And then obviously, you know, I think I took, like I said, a few a sort of week after his first one to make, you know, to see everything was OK, and then the same with the second one. And it was, you know, that’s been OK but…

Diane: I think you’re just lucky with your employer.

Andy: I think I’ve been lucky with it. Whereas otherwise, like I said, you know, but I, you know, I have, we haven’t... like I say, we haven’t had a... afford to go on like big holidays or anything else like that anyway, so I’ve used my leave to you know.

So it has a knock-on effect…

Andy: Yeah.

…in terms of spending time as a family…

Andy: Well yeah, yeah.

…under normal circumstances?

Andy: Precisely.

Diane: And a lot of, all... [son’s name] hospital appointments I had to take off as holiday, and working part-time I don’t get that much holiday anyway so... definitely impacts on my time that... that we…

Andy: Yeah.

Diane: I can just book off as, you know, family time. It’s, you know, I’ve got to save days for this appointment and that appointment.

Andy: For this appointment and that appointment, yeah.

Diane: And potential appointments that might, you know, arise, so yeah.

Can you see any way around these issues, anything which would help?

Andy: Ooh God [laughs] I think sometimes it’s maybe, you know, if dependency or, you know, compassionate leave or whatever, ever the law changed around that kind of... that kind of way, then that would probably... certainly help [umm] you know, even if it was a few days. Because I know a work colleague of mine as well where, likewise, the same thing happened: because it was planned, literally she spent two weeks, you know, as leave basically.

Diane: Hmm.

Andy: Because the organisation, you know, it’s not set up to help parents’ kind of that way.

Diane: Yeah I think definitely if your child has a medical condition or, you know, potential medical problems, that... allowances should be made for that, rather than having, you know..

Andy: Just to use it up, or use part of it, or it can be used different ways, you know.

Diane: Yeah.

Andy: Because that would be kind of useful. But, yeah, I mean that’s down to the employer. I mean I can’t... I can’t fault my employer at all, because they have been good at that, and my manager has been particularly good, but then that’s just the…

Diane: Just been lucky.

Andy: Yeah exactly, some may be more…
 

Tamsin and Andrew explain how they manage to get to clinics with their son who was born with bilateral cleft lip and palate. Andrew feels it is important for both of them to attend appointments.

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Age at interview: 29
Sex: Male
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Andrew: Yeah I mean the travelling is, is unfortunately the nature of the beast.

Yeah.

Andrew: So it will be… it will be what it will be [laughs].

OK.

Tamsin: The cost of it has been a... 

OK tell me a bit more about the cost, that would be good.

Andrew: The cost of transport is just high these days, especially going into [place name]. It effectively costs about £100 a visit, a hospital appointment, to meet those appointments.

Right, is there any help, any financial help at all?

Tamsin: Not as far as... well not as far as we’ve applied for.

Andrew: No.

Tamsin: Sometimes…

Andrew: We’ve never been offered anything so…

Tamsin: No, sometimes you can claim Disability Living Allowance, but as far as I know, they, it’s not there to help with the cost of travelling to and fro to appointments. It’s to do with, that’s to do specifically with the care of the child.

Yeah.

Tamsin: Maybe now that I’m not working, but I think we probably just earn... you probably earn just over the threshold to get any other help, and they’re reducing that all the time anyway, so yeah.

Yeah sure.

Andrew: I mean, yeah, again the NH, it’s amazing that the NHS does it in, it’s free at the point of care.
Yeah.

Andrew: But it still costs a lot [laughs] to be able to access that care and…

I was wondering about, you must, you must have had to spend time with your…

Tamsin: Yes.

…with your son in hospital.

Tamsin: When he’s gone in for operations we get a night…

Do you get, is accommodation provided?

Tamsin: We get free accommodation the night before, and then I stay in hospital and you go home.

OK.

Tamsin: We you could pay for another night but we, it’s just as expensive to go home either way so…

Is there hospital accommodation, or would you stay somewhere else?

Tamsin: We stay in the hospital accommodation.

OK yeah, so you have to pay for that or?

Andrew: Well I normally come home…

Tamsin: Yeah.

Andrew: …between and... because it’s just more cost effective to do that.

And you continue to go to work and?

Andrew: No we, I

Tamsin: He’s normally only in a night so…

Oh OK.

Tamsin: Yeah it’s not a long time.

Oh is he?

Tamsin: Yeah.

Oh OK sorry.

Andrew: And I always take holiday to... to be around and to get through that time. So that’s, I mean as a working…

Tamsin: It is taking a holiday, isn’t it, so…

Andrew: …as a working, full-time working person and my…

So you find the level of care is eating into your leisure time,

Tamsin: …at home time.

…at home time, off work time?

Tamsin: Yes.

Andrew:...We’re now eight, you know, or effectively we’re two years into having to have been going to hospitals. I’ve been lucky to have understanding employers, but the whole of my holiday has been effectively going to appointments and…

Right.

Andrew: …hospital things. And we are looking, we’re now at the end of that and…

Tamsin: Hmm.

Andrew: I’ll be honest, I’m really looking forward to taking a holiday.

Tamsin: [laughs].

Andrew: And not going to [laughs] and just taking…

Tamsin: Not having the recovery and stuff so…

Yeah enjoy time…

Andrew: Yeah.

…with the family.

Andrew: But that is again unfortunately the nature of the beast. And the tough thing is, I think the toughest thing for being a dad is that you are out to work and in, in the whole of that time it does get eaten up going to all these different…

Tamsin: Yeah.

Andrew: …appointments. Because you want to be there to go and find out what’s being said because, you know, in any context…

Tamsin: It’s hard to take it second-hand, isn’t it?

Andrew: It’s hard to take it second-hand, and in any conversation an individual can hear something very slightly being slightly different, and having two people at an appointment, we always find that we take something very slightly different from that conversation, but we pick up more as a whole from the conversation.

Sure.

Andrew: So it is... we’ve found it very important and useful that we’re both there to... as much as we can be. 
There is also a financial cost to families as they need to budget for travelling expenses, accommodation and unpaid leave in order to attend clinic appointments with their child. Some mothers felt they compromised their own careers and employment opportunities in order to be available for clinic appointments. A few parents had been able to get state support for their child, for example Disability Living Allowance. However there was a reluctance to claim this benefit as they do not consider that their child is ‘disabled’. 
 

Jenny revised her career plan so that she would be able to take her daughter, who was born with a cleft palate, to all the appointments she would need.

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Age at interview: 36
Sex: Female
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It varies. Sometimes it’s fortnightly. We’re on a bit of a break at the moment because of a surgery coming up. But sometimes that’ll be twice a month. So sometimes I’m having to kind of squeeze my work into other days or having to take time out of work to go to appointments.

Yeah so you’ve had to compromise on your career a little bit, would you say, or?

Yeah, yeah which is

Is that fair to say or?

Yeah, yeah which absolutely is... you know, I don’t begrudge that at all. But I think it…

And would that be an influence in your decision to leave your role in the NHS…

Yeah.

…and go freelance?

Yeah, yeah. My, my boss was always very understanding and, you know, would kind of let me have time off for Maisie appointments, but it would still be a pressure because I didn’t, I wouldn’t have had childcare in place to make up those hours.

Yeah.

So it would mean that I kind of, you know, was either not there for people that needed to see me, or I was kind of trying to squeeze too much work into not enough time. So yeah even though kind of management were very supportive, it still felt like a pressure with the kind of work that I do to, to get that done. 

Yeah I can understand that, yeah.

And so it... and I feel bad even saying it because, you know, I’d do anything for either of the children. But I think it is that still kind of living with it week in, week out: it’s kind of, you know, compared to if Maisie hadn’t got the cleft, there’s been more stuff to try and squeeze in. It’s been more difficult than, than it would have been otherwise.
 

Della has a son and daughter born with cleft palate and other conditions. She has subsequently found it difficult to work due to amount of appointments they need to attend.

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Age at interview: 27
Sex: Female
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But there’s so many hospital appointments, it’s literally yesterday I had two, tomorrow I’ve got one, it’s, it is a lot. And they all seem to come at once: they’re like every three to six, and they roll on a cycle like that. So all of a sudden you’ll get... the beginning of August, within four days I had two separate appointments in [place name] I had to get all the way to and back.

Yeah.

And then there’s the local ones in amongst that a week later, and it all comes at once. And at first her dad wasn’t working, so I was getting him to take her, and look after her when she was ill. Because she... when they’re younger they seem to get a lot more coughs, a lot more colds than... average children and she was off a lot. And then he got a job, and that was it, I... it was... even though, you know, she didn’t have the tubes or anything anymore, with all the hospital appointments and things like that I was constantly taking time off work. So when I got pregnant with Tay they were like, “We can’t afford to keep you on,” which I could understand in a way because to them it’s like, “She’s going to need even more time off going for scans and things like that.” But it was hard because I’m thinking, “Now I’ve got no job. I’ve got... I’m going to have another child.” So in that... it scared me, absolutely terrified me. I was living with my sister: we lived together since... since we left home we’ve always had a flat together. And there wasn’t going to be enough space, so it was like, “Now I’m going to have to move out on my own, I’m pregnant,” and it was terrifying at the time. But it’s... everything works out I suppose: just difficult in the beginning.

So there must be a financial cost as well?

Yeah.

How do you get to the appointments and?

I didn’t know until Tia was about just over 2, just about 2 ½... the health visitor got involved a bit more heavily, because there had been something that had happened with her dad, and the health visitor came round. And then she found out about all the problems and things and she basically advised us of all these things that we could apply for.

Right.

And she explained about the Disability Living Allowance and she filled out all the forms and sent it off, and Tia got that awarded at the middle rate, at the care component. And that helped dramatically towards... because it is expensive getting to the hospitals. You do get them refunded if you’re on benefits, but you have to remember to take all these different things, and sometimes they don’t accept what you’ve taken and it’s a bit of a nightmare. Because the worst is when we have to go to, because it’s [specialist hospital] it’s like £40 something on the train and you’ve got to find that money in advance. Even if you are going to get it back, you’ve got to find that.

Book your ticket.

Book it, pay for it yourself and then get it refunded once you get to the hospital. And when I first had Tia that was a... very difficult for me: just on normal Income Support with the Tax Credits it was impossible. And it used to scare me trying to scrape the money together to get to the hospital appointments. So when I got the Disability, it helped massively. But in my eyes it was... it was difficult, because to me she’s not disabled.

Yeah.

So it was like... swallowing your pride. It’s kind of like you’ve got to swallow your pride to accept this money.

There’s a labelling of your child?

Yeah that’s how it feels, yeah, and I didn’t want to put that label on her. And it’s like I had to swallow my pride because, in the end, you know, it benefits her and she has a better life from it. But then even with my son, I didn’t apply for it for a very long time: I didn’t [laughs] want to. Again it was the same thing: I didn’t want to do that, it was not something I wanted. I’m thinking, “It’s going to get better, it’s going to get better,” and then in the end it wasn’t.
Last reviewed June 2017.
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