Damian

Age at interview: 42

Brief Outline:

Matias has Cri du chat syndrome and is profoundly disabled. Over the years he’s had severe flu episodes and several infections. Matias, aged 10 goes to school and lives with his dad. He’s a really happy smiley boy and loves being around people.

Background:

Damian is a clinical network manager. He is also the primary carer of his son Matias. White British.

More about me...

Matias has Cri du Chat syndrome. Cri du Chat is a very rare genetic syndrome and only about 500 people in the UK have it. It affects both physical and intellectual development and affects people very differently across a broad spectrum. Damian says his son is profoundly disabled. Matias was diagnosed when he was 5 days old which Damian says is unusually quick to get an accurate diagnosis for such a rare disorder.

Matias cannot walk at all and he uses a standing frame and also likes to lie in his bed. He mainly communicates through smiles, other facial expressions and bodily movements or crying when he is unwell. Due to his limited mobility and lowered immunity he can be susceptible to infections. However, apart from recurrent ear infections, Matias is a very well child and has only had one severe episode of the flu. A typical cold episode for Matias is similar to that of anyone else’s, starting with a snotty nose and a croaky throat. He also tends to develop very high temperature. His parents want to avoid Matias having too many courses of antibiotics and only take him to the GP if his symptoms persist for a long time or are getting gradually worse. Matias is peg fed directly into his stomach, and Damian describes how this makes it very easy to give him antibiotics, paracetamol or keep him hydrated if he is ill. 

Damian has a great relationship with the health care team that look after Matias, including the consultant, the GP surgery, the pharmacist and physio and speech therapists. This helps the communication with the family as well as treatment decisions in acute illness. As Cri du Chat is so rare, the health care professionals respect the knowledge and expertise that Matias’ parents have. Damian does a lot of research online into Cri du Chat is also a Trustee of the national support group. He says more health professionals are beginning to realise and respect the knowledge that parents have of their children’s needs.

Matias enjoys going to school and loves being around people. Damian describes the positive effect Matias has on those around him and how this gives emotional resilience to them both.

Damien has a good relationship with his own GP who regards him as a ‘sensible parent.’ He wishes that the out of hours GPs would also trust his knowledge and prescribe a course of antibiotics without asking to see Matias.

On Thursdays say for example we phone our GP surgery, the GP just goes oh it’s Matias no problem you’re sensible how long has he had it what are the symptoms bang okay there you go there’s the antibiotic go I’ll send it to the pharmacy now just pick it up.

You wouldn’t need to see them?

No.

Just over the phone?

Over the phone, wouldn’t need to see them, we would have a conversation over the phone fantastic great. Out of hours we’ve had to do it on, you know, on a Mon-Saturday rather [um] it’s just been, understandable, they don’t know, it’s  about the relationships, yes so you phone and speak to, you phone 111 they put you through to the GP, you know, whatever after how many hours and you know it should, I’m not critical of the system that’s the, and I understand it, it’s just then, and then you have to, it’s quite frustrating because then you have to go in and take Matias out who’s ill, you know, he’s, he's immobile and ill.

So they require to see him?

Yes, so therefore, I mean I've had to take him out when he’s ill and he’s, you know, to examine him and it’s like that’s quite, that can be frustrating. Again I don’t really blame the practitioners themselves or the GP or anyone, I don’t it’s not, because they, you know, they’ve got, they’ve got their risk assessment to make that’s saying why should I, you know, why should I prescribe something to a child I haven’t seen. I actually think the part of the problem is they don’t really understand the syndromes as well, they see it as, you know, if the child didn’t have a syndrome would they behave differently, anecdotally I’d say they probably would. I think they think Cri du Chat I’m not sure about this, I’d better see the child and that, and that can be a bit of an issue so you’ve got to trace back down to wherever it is so obviously, and it’s usually not your local GP surgery so invariably it won’t be your local GP surgery so you have to go through another GP out of hours surgery. 

Talk to someone for quite a long time about everything because they don’t know Matias and then you end with just antibiotics thinking, you know, sometimes you think to yourself just rely on the parents for that sort of knowledge to say actually, you know, he, if you give him a dose of amoxicillin this usually clears up really quickly this massive ear infection or whatever, that usually works, you know, that clears up. But they are less reluctant to do that out of hours and again that’s the system thing I don’t know how, I don’t know if it does need changing but it’s just rather, it’s frustrating. And it’s quite funny because [laughs] you do get the time where you go down I remember seeing this one out of hours GP and she said to me [um] ‘What about, you know, do you know how to use the peg flush?’ and I’m going ‘Well yes because he has a, yes exactly he has all his feeds through it,’ so I know the fact that if I give him some antibiotics down that I need to flush it it’s like. I mean you just have to accept these things people say these things sometimes and you just think, let it go, you know [laughs].

And I do, and I do but, you know, it is, it can be a little bit frustrating sometimes, you know, to, when you, you know your child and we especially know Matias and we’re quite sensible parents and when you think sometimes you just want, you just know, you know, you don’t want to wait, you know full well if you give him antibiotics now whatever it will definitely clear up, you know. And based on past history, you know, you just think yes that’s and that’s. And actually what’s infuriating is based on his advice from his ear nose and throat consultant who says yes he needs, you know, and then they and then, so you know, the ear nose and throat consultant knows but whichever GP doesn't know and you're just thinking what, it’s not that there’s a lack of trust from the, I suppose you could say there is but you sometimes think to yourself just, just trust what the parent’s saying about the situation. And I don’t want to, you know, I don't want to delay it another two days to get antibiotics because that makes a real difference and you know if you got, if you were able to get those, you know, do it in somehow the system that enabled you to just have those treatments very readily but.

Matias’s parents understand that antibiotics are a last resort and that there is no point in taking them for a virus; they watch and wait before seeing the GP for treatment.

What about in terms of antibiotics and being prescribed antibiotics, obviously he’s not on them a lot, have you got any sort of concerns or you know thoughts about antibiotics resistance?

Oh very much so yes, absolutely, absolutely this is definitely, I mean we I often have the discussions, you know with, with his mum and about what to do when he gets, you know, and as I say it still could be viral and I’m thinking it still could be viral, it still could be viral it’s, you know, it’s that point where you go okay you know and the antibiotics is a last resort thing for us, we don’t, we recognise the fact that there is the issue of resistance to it and, and so therefore it’s not as if it’s our, our method of choice of treating him. Because for a start to doesn’t work, if its viral it's not going to work, it just it does more harm than good so, you know, it is only a case of look it’s been whatever how many, you know, 15 days or whatever and it hasn’t gone anywhere and he’s still coughing up horrible green stuff it’s, you know it can. You know, should we talk to the GP about giving him antibiotics and she usually yes, you know, oh yeah actually you know. But it's not, but it’s definitely something we think about absolutely definitely something we think about, you know, the majority of colds are viral, it’s not and it’s just a secondary infection so.

Matias’s dad gets a reminder from his GP surgery each year to have the flu vaccine and they both get it done.

In terms of the flu jab can you just tell me a bit more about the decision that he started being given that and at what age did he start having the flu jab?

He’s always had it I can’t.

Since he was a baby?

Yes I can’t, I think it was just decided you know Matias is, because of his disabilities recommended the GP I think put him initially on to the recommendation and saying that, you know he should they have a list of people that are certain conditions don’t they that I think, I think that they just and we said well that makes perfect sense.

Does he have the nasal spray or the injection?

He had for the first time this year was the nasal spray.

Yeah.

Yeah, yes he had the injection last year and this year was the nasal.

Hmm. Okay.

And again fine, nasal yes.

You are happy with him being on the flu jab?

Oh gosh yes absolutely we find it, I mean he does get the, he gets a reminder, we get the reminder through the post, I think I actually get text messages now as well, actually yeah we do. And I get it because I’m a carer so we both go together and just say, generally that’s what they do, they, you know,

So you have it for yourself?

At the same time yes so yes no, absolutely no problem at all. I mean it's quite interesting actually because again  when he had the injection last year he’s again because of his disability there’s one of these sort of benefits he there’s some suggestion with these, with Cri du chat children is that they don’t feel as much as their nerves are a bit sens-so pain conduction doesn’t happen as quickly. So we had the jab and he didn't even bat an eyelid, he just kind of looked at the nurses doing it and oh, okay. 

Damien works at a University and he is able work at home whenever he needs to, but it is difficult cancelling meetings when Matias is ill. Quite often he catches up with his work in the evening once Matias is asleep.

And what about in terms of during a sort of episode of illness in terms of practicalities you’re his primary carer, you know, how do you manage, everything whole thing?

Oh right yes that’s, yes that is difficult or that can be difficult very, I mean thankfully I’m in a position where I can work at home readily.

Oh good.

And also it’s not just working at home really it’s also like, you know, hours of the day are not, you know, it’s not like I need to work at home between nine and five.

Yes.

I can do whatever I, you know, as long as the, you know it means it’s done so, you know, Matias, if I have to do four hours between 8 and 12 in the night after Matias has gone to sleep I’ll do it because it just needs to be done. So that on that basis that’s very beneficial, it’s still problematic though obviously like I have a lot of meetings so, you know, you think oh gosh, you know, I mean I've had to cancel meetings quite readily because of Matias being ill and that is difficult. And his mother who comes round she’s a nurse so it’s very difficult for her to get time off to care for him which is understandable, you know, and it is easier for me so she, she does three long days so that’s beneficial in itself because that means she can do more days a week as well so, you know can look after him but. Yeah I mean essentially I’m thankful in the fact that I determine my own workload essentially so that really helps and when I do it, that really, really helps and, you know, in another situation where I would be stuck in an office nine to five that’s very I think it’s very difficult for parents.