But I mean I’m in a good GP practice where there’s a team, a lot of teamwork going on. You know, you can see that if you phone them up somebody will phone you back. They start advertising the flu (jab) clinics which are open, drop in clinics, you know, quite early on regularly in the summer time they will start advertising them and if you can fit into one of those you just phone up and they will make sure that you get booked in and if you haven’t booked on they will be contacting you to say, Please can you book your child on for this. They need the flu (jab). And so I think that is quite good because obviously they are doing everything they can to make sure that any vulnerable patient in the practice is, you know, is immunised as much as they can do that. Yeah and then we have an open surgery as well. So you can make appointments with individual GPs but every day there is also a walk-in surgery. So if you wake up in the morning and you need to go you can just go and you sit and wait and it might be two hours but you know you are going to be seen that morning. I just think it is very, very good actually I do. And you don’t go unless it is urgent because you might have to wait for two hours so, you know, if you are going it’s because you need to go and I think it does work quite well.

How do you decide who to, whether to see somebody or to contact a GP or out of hours or go to the hospital?

For, in general I wouldn’t take him to casualty because it’s very stressful

Yes and he’s,

for autism as well.

Yeah.

So in the past we have, when he’s come, when a, I think when he was younger and we didn’t understand, I think a lot more difficult, complex now.

Okay.

Now I’m more experienced now

Sure.

I can deal a lot more, better, and I have more information at my hand, I can call on who I need to call on

Yeah

and with the GP he gets prioritised anyway, during working, during the working hours they prioritise him.

Okay.

So they can see him on the day. If I ring in the morning he normally gets seen on that morning, it’s by appointment only but he gets to be seen.

Yeah.

And we get his antibiotic. And for out of hours in general he always, every time I explain they are very cautious when they have a complex health needs child coming along, and they’ll, everyone I’ve seen they have always prescribed what I ask for okay. Because it’s only two antibiotic he can take anyway.

I think from experience I know what I need. If he get the treatment antibiotic there’s no need for him to go to hospital.

Okay.

Okay. And I don’t think casualty is for that anyway, okay. For, just for, for still something like this it’s, it’s not necessary and there are things, there’s walk, a walk in centre. There’s one open, they have doctor presiding, to go to walk-in centre. So I can get there, there’s no need for him to go to casualty.

It always starts with an ordinary head cold. Every time it starts with an ordinary head cold. So now knowing that that is the trigger we always, the minute he starts with any kind of sneezing or cold symptoms we increase the amount of preventative inhaler that he takes. Or we double the dose usually of Becotide inhaler. And we give him the Salbutamol Inhaler regularly, even when it’s not necessarily evident that he needs it, and that’s, that’s the advice that we’ve been given by our GP. Sometimes that’s enough to prevent it going any further. Although he does usually experience shortness of breath, more than a child without asthma would experience.

However, especially in the winter it usually develops into, onto his chest. So he gets wheezing and crackles on his chest. And he’s often requires antibiotic treatment and supplementary steroid tablets, prednisolone tablets.

Yeah.

Which we have to dissolve in water. But because I’m very aware now of the progression and the, you know the sort of the alarm symptoms for needing the supplementary prednisolone and the supplementary antibiotics that when I take him to the GP they usually immediately agree with me, and there’s no debate. I go in and say, I feel my child needs steroids and perhaps antibiotics, and usually they say, Yes we agree. And they give us the prescription and then we’re able to deal with it, usually now at home.

The first I’d say five, six years of his life we ended up in hospital every winter at least once.

Before I was more confident with what, with how Meg, Meg’s illness plays itself out. When I wasn’t sure exactly what to look for and what was going on

Yes.

I did, my first port of call was on out of hours

Okay.

if it was, or my GP but again I could never get in to see my GP. So [um] in a sense I managed the, well it’s resulted in me managing Meg’s illness at home to the point where I feel I can’t any longer, and that management is pretty much what my GP or the NHS triple one or an out of hours service is going to, they’re going to do the same for me that I can do for my child. So I do it here at home and when I feel I can’t any more I go in to the hospital because then I know I need tests and an x-ray done.

In the past my experience with the GP our family GP, I must be specific about that because if I would just see a locum or anyone who didn’t know us very well, it, it, the attitude was well wait until you see your GP and then he’ll look into it further. That was the kind of attitude. Initially he was and always has been very helpful, very methodical, would go through things very carefully. Cover all the bases, tick all the boxes and he was very communicative and understanding about Meg and our situation but he just didn’t have the answers. He just didn’t have the knowledge. It’s just the awareness is of interstitial lung disease is not really out there with the information. But I will never see a nurse, it doesn’t matter what time of the day or night, if my only option is a nurse I won’t go to see a nurse anywhere. Currently my GP as I say I struggle to get an appointment anyway, I don’t, I haven’t seen my GP in maybe 8 months with Meg, I will probably only see him again when I need the repeat for our Azithromycin renewed.

Yeah. The prescription.

Yeah.

And what would you do when these things start happening? You know you sort of up the inhaler and you’ve upped the, his standard medications but then if, if that’s not enough what do you do then at that point?

If it’s you know an ordinary weekday I would ring my GP in the morning as early as possible, and ask for an appointment the same day, which they generally are able to give for children. Sometimes we have to go up, sometimes they don’t give, even though I ring up and say, My child’s asthmatic, he’s known to have problems with chest infections. I think he needs additional treatment urgently. They don’t always give an appointment. They have to have a nurse ring you back and go through a triage process over the phone. So sometimes you have to wait until the, almost the end of the day to get an appointment.

Right.

Which sometimes I’m not terribly happy with, because children can progress quite quickly into a more serious condition. But that’s the system that they operate. We do usually get seen the same day. If it’s a bank holiday or out of hours we have an out of hours GP that we can ring, usually again they’re able to see him within a couple of hours, if not we would go to A&E to seek the additional medication.

And it’s been really helpful to us to have our doctor that we now see and have seen for a long time said, you know, because generally you make an appointment and you see any GP and he said, No I think because you’re obviously a regular visitor and it’s good for me to have a handle on all the conditions and the background without you having to go through it every single time. And that’s really helped I think seeing one GP who knows Alex and knows the situation and you don’t have to go through every single tiny little background piece of information again and again.

So continuity of care is crucial here?

Yeah, yeah. I think so, think so. And somebody who just knows your situation and. And also unlike our current doctor has, let’s us have a course of Prednisolone at home because a lot of the time we were ending up going up to A&E and one of the main reasons we were there as well they got us a course of Prednisolone from the, from the pharmacy which took forever. And obviously they could give it to us in the hospital but then they couldn’t give it to use to take away without going through all the paperwork. And it, that was another thing that’s really be crucial to us, to be able to be, to be trusted I suppose once, once the doctor built up enough of a relationship that he knew that I would manage it sensibly and I wouldn’t just give it to him unnecessarily which is the last thing I would ever want to do. I think the last thing anyone would want to do. But having that supply of Prednisolone here at home so that if it’s late at night or early in the morning when you’re on holiday or, you know that because the condition can go down so quickly you know that you’ve got that available without having to go into extreme measures straight away. And quite often a day or two of Prednisolone would make the difference with the wheezing.

And, you know if he’s still having these symptoms by about day three, [um] who would you thenyou said you’d seek medical advice who would you go to?

I’d ring the GP’s surgery.

Yeah

And we are very lucky, we have a very good service where they’d see us the same day.

Yeah. Is that for anybody or is that particularly for children do you know?

I think it’s for anybody.

Yeah

They have what they call a sit and wait appointment which can be literally what it says; it could be a two hour wait but, you know you do get seen that same day. Quite often we’ve had to use out of hours as well.

OK

Because things happen at weekends and bank holidays quite often.

Mm yes, yeah. And what sort of out of hours provision do you have locally here? Is it twenty fouror well, does it cover the night hours when the surgery’s closed?

Yeah it does, yeah it does. And it’s normally a telephone call to a 111 and then somebody will call you back and we get an appointment at the local hospital to see a GP. So, the minor injuries unit but you’re seeing a GP, so you have an appointment so it’s not too long a wait when you get there.

And what’s your experience of the 111 service?

Very lengthy in the questions that I’m asked. Comparing it to the service that was offered before, I do find that the length of time that you’re answering various questions does seem a little bit over the top maybe. But having said that, I’ve never really had a problem that I’ve not got what I needed to get out of the service.

Do they ever give you any sort of advice on the number or is it more sort of for you to be able to access the appointment to get the appointment?

Yeah

Is that kind of your?

Yeah that’s my aim when I’m ringing the services yeah.

And when somebody calls you back is that a medical person or is it just them confirming the appointment?

No it’s not, it is just them confirming whereas, prior to this service it was a medical person that would call you and say, “Yes, I think I need to see your child,” or, “I don’t; you could do this.” Yeah, so it’s a little bit less personal this service.

Mm and are you happy using them as a sort of way for out of hours appointments or?

Well it’s the only way to access that GP out of hours so; you don’t really have much of choice really.

How do you think that could be improved? How could it be better?

I think having the call-back by a medically trained person would be helpful particularly if you were a parent where you’re not entirely sure if you need that GP appointment or not.

Yes

And then just having that conversation with the GP on the end of the phone, out of hours, could determine whether you need to go the chemist and buy something and administer yourself or, you need to be seen that day.

And how do you make that judgement, say in the evening or even in the night that you need to call the 111 and access the out of hours then, rather than wait till the morning?

I think again that’s been the learning curve as well that I mentioned earlier.

Yeah

Is thatand you do kind of know as a parentyou get that sort of instinct in that, yes things definitely aren’t quite right and I think, now on hindsight, knowing that things can take a turn for the worse quite quickly, you kind of just know that you need to get some medical advice or some antibiotics. I mean that’s really the reason that I would do the out of hour’s appointment because you can see things aren’t working; they can deteriorate within a few hours so you need the antibiotics tonight, you couldn’t wait until tomorrow.

And what’s your experience of out of hours? And is the only reason you’d go to out of hours you know if it’s, if the surgery is closed basically? Or would you

Yeah I would only go to the walk in centre or out of hours if my, either my GP was closed, or if they refused to see him. Now they’ve never

Yeah, yeah.

completely refused to see him.

Sure.

But if I felt I wasn’t able to get an appointment with, I wouldn’t necessarily go straight to A&E, we have a walk in centre that’s open until 9 o’clock at night.

Okay.

Every day of the week, so we could go there. It usually means a long wait, but when the GP closes about 6 o’clock there is an out of hours service for the whole of the area where I live,

Yes.

So there’s a particular phone number that you ring and there is one health centre in the town centre where you have to go to take the appointment.

After 9pm the health centre in town has the out of, has out of hours GP’s. So all over night I think from 7pm till 7am you, you have to ring the call centre, give them a description of the problem. They ring you back, a triage nurse rings back and they decide whether you need to be seen at the health centre or whether they can give you advice over the phone. And usually if it’s a child with Daniel’s condition they give you an appointment within a couple of hours. But it could be 11 o’clock at night, they might say there’s an appointment at 11.30 and so you have to get the child out of, you know the house. Wrap them up warm, get them in the car. And for us it’s a trip of about 9 miles to the out of hours clinic in the town centre.

And what’s your experience of using them for these flu episodes?

They’re actually, generally very good and they tend to err on the side of caution. And there have been a couple of occasions where they’ve actually sent us onto A&E.

Yeah.

Feeling that he perhaps needed supplementary oxygen and really

Okay.

really he didn’t, he just needed the steroid treatment so they, they do seem to be actually more overcautious because they don’t know the child’s history. They haven’t got the full notes to hand they tend if they’re in anyway, if his oxygen saturation level for example is not within sort of 95 or above, they would always send you onto A&E.

Yeah. And, and

The, sorry the worst thing is getting hold of prescriptions at that time of the night, there is one chemist that’s open till midnight.

Okay.

But if you happen to go at half past eleven,

Yeah.

By the time you get the prescription you can’t pick up the prescription anywhere, there is nowhere to get it until the following morning. So then in some ways it’s almost been a wasted experience because you could have waited for the GP at 8 o’clock in the morning. So the, it’s seems a bit counter-productive to have an out of hours health centre that’s open all night, but they, the pharmacy next door, right in the same building is, shuts at midnight. So after midnight, between midnight and 7am, well 8am there is nowhere to get a prescription.

Do they give you anything on a kind of emergency basis if you need steroids or something? Do you

Not, not at the out of hours GP.

But then it’s A&E I suppose, that’s different.

Yeah A&E will give you, will give you a small course of maybe a 24 hour or 36 hour course if you go to A&E.

Okay.

But if you go to the out of hours GP at the health centre they give you a standard green prescription form which has to be taken at a pharmacy.

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.

It depends on how serious it is and whether it will end up with an ear, throat, chest infection or whatever. I do know, with my youngest, that when he does start the incessant coughing, as I defined it earlier, when he does start that with all the inhalers as well, that’s the point when he needs antibiotics.

Right.

And if I explain to a doctor, He’s cough, cough, coughing. They normally say, Oh that doesn’t mean he needs antibiotics. Because for most children it doesn’t but it does for him. If that’s the point at which, if you give him antibiotics, twenty four hours later he’ll be better and I know that and that’s fine with.

Okay.

My GP but with the out-of-hours service you have to really push for that because they don’t know you. So you have to sort of push the competent, capable mother card and say that he really needs them.

How do you decide who you’re going to see, whether it’s out-of-hours, A and E, your friend, GP friend, you know? I mean in the olden days they had NHS Direct, now they’ve got the new 111 service.

Yeah, I wouldn’t bother with that.

Why’s that?

Because I want to see someone. And I want a prescription. I wouldn’t take them if they don’t need one. Maybe once or twice I’ve been sent away without one and I’ve decided not to really push. I’ve never, when I’ve tried really hard to get one been refused but sometimes, when I talk to the GP, and listen to them and I haven’t been completely sure of the situation, I’ve gone away without one. But, usually, in that situation, I’ve been back within a day or two. So I was right really but I wasn’t completely, but, you know, you don’t want to give them drugs they don’t need. So I’m not, you know, I’m not a drug happy mum in that way because I don’t, you know, I do want to listen to the professionals but I will always try and go and see my GP or

Yeah.

I’d just go to the out-of-hours. They’re all right, the out-of-hours. They just don’t know me that’s all. That’s the only difference.

You sometimes have to wait for about forty five minutes if they’re very busy. And that’s not very nice because sometimes there’s children in the waiting room vomiting and I mean I really wouldn’t take a child with vomiting anywhere but you don’t know what situations they’re going through do you. No, it’s not great but it’s all right. You can, you can see somebody.

What about A and E? Is that ever a consideration?

I’ve only ever gone to A and E for an accident. I’ve never gone to A and E for a virus. Because we have all night out-of-hours care so I would prefer to go there. A and E, you can wait for four hours, you know.

I did actually phone the GP. I think, I’m not sure if it was Christmas Eve, and he just said, Well I think you need to take her back to the hospital to be re-assessed. They know more than we do. So he just passed the buck. So I actually don’t bother going really to the GP for anything like that. I will go if she’s got you know a sore throat, I’ll get an appointment at the doctors, but if it’s anything, like if she’s got ketones, that’s always an indication not if it’s 1 ketone or something, but if she’s got +3 or +4 I’ll just take her straight to A&E. I might phone the children’s ward first, again with the sickness and diarrhoea I’ll phone the ward and speak to the nurses, and just say, Right shall I bring her in now? Do you think? Or if not I’ll just go straight in. But yeah the GP oh I don’t really, I don’t think they know, they’re general practitioners aren’t they? They don’t really

And do you think that’s because of her underlying conditions?

Yeah they don’t know

Do you find it easy to, well what about the GP then? I mean do they have any role in, in her care?

Not really. There’s,

Do you mean, is there, just minor coughs and that sort of stuff.

Yeah.

That’s it.

Yeah that, yeah that’s really what I would go for. Anything sort of to do with her asthma, I mean because I, where I took her before, took her to the GP because I didn’t really want to go all the way to the hospital for a nebuliser, I knew she needed a nebuliser. Took her to the GP, he gave her, he said, Oh we’ll have to wait till the nurse comes in. Gave her a nebuliser, said, tested, listened to her chest after, said she was perfectly fine. Four hours later she collapses at school.

Right.

Couldn’t breathe. And her Sats were really low. And her sugar level had gone down, she was a 4, I think 4.1. I mean the ambulance was there within four minutes, they were fabulous. I just lost the plot and collapsed. Well I didn’t collapse but I just, I couldn’t, I think I was so scared because it just, and they got her teaching assistant from the class to come up and sit with her cos I was just crying, they didn’t want her to see I was just so scared I think.

Yes, yeah.

So that was yeah that was a bit of a problem. So I just don’t trust the GP really.