And has it ever happened that for a sort of flu like illness that he, you had to take him to A&E? Do you remember?

I don’t know. Probably once we might have done, early days, early on when we don’t, we didn’t know and we’d say you know, He’s got a temperature and he’s really struggling to breathe, and we, but you still have to wait you know an hour for triage and then another couple of hours to see a doctor, and this is in a cold waiting room where they’re not, they can’t sleep and we’re kind of looking at each other [husband] and I thinking you’d be better at home. But as a new, new parents you’re kind of think, Oh we need, we need A&E. We need A&E. So yeah I think we probably have taken him but that was when we didn’t, wouldn’t have known it was just a chest infection. So I think now, I don’t know whether we’ve just become used to the fact that he gets them a lot and we just have to ride them out at the moment.

Is there anything that you could, or that you used to do when he was little?

I did when little, when he had a high temperature I actually called the ambulance.

Cos he was so high?

Yeah.

The temperature.

And they were quite, they were very happy with that because

Sure.

a child, he could, they said with his complex, at the time he was suffering from epilepsy, he was on medication for epilepsy as well

Yes

and he’d got hypoglycaemia.

Yes

So they all, always I think I always call the ambulance in.

Has that happened many times?

Quite a number of times. He’s a regular, they know him so well, everyone knows him now cos, not now but he used to be when he was young. Oh I see you again then. [Laughter].

And what would happen when the ambulance would come and you know, you know let’s see he had a high temperature, would they treat him or would they always take him to the hospital?

Take him to hospital.

Always?

Yeah. And they’ve been, I think the ambulance are very good. They always took him to the hospital that I ask for. In the rule it’s always been the local hospital, and I, and they all agreed to me, with me say that Oh [hospital name] is better because specialised. And also all his consultants are there.

Yeah.

Okay and they say I won’t take him anywhere, we go to [hospital name].

And I just, it’s really difficult because they were asking me in hospital and I just couldn’t quite put my finger, I just knew something wasn’t right. As I said, it’s like instincts of you know your child. It’s like when a child cries with a high pitch cry you know that they’re hurt. So I just knew he wasn’t right, because the Reg in A&E was like, Well what have you brought him in for? He’s all right. And it was the consultant said, No, he said, If Mum’s worried we’re going to see to him. And there was changes on his x-ray but not on, where you’d be like overly concerned. And he thought if it was OK for the two, and then he did say to me like, When the infection peaks he will go rapidly downhill. He said, Because normally we only see them in hospital when the infection’s peaked. Because, we miss the very first warning signs, which for Jack was the respiratory rate and the temperature. And immediately maybe just a little tiny bit more oxygen. He’s permanently on half a litre and he was in by three quarters to a litre of oxygen. So, which isn’t major but you think, and another sign with Jack is Jack doesn’t have seizures when he’s sick.

He’s the complete opposite to most people with epilepsy, so he does not have seizures at all when he’s poorly. And he, I’d be, we hadn’t seen the seizure so we were a bit, and his condition is like constant seizure activity. And they were like sort of the main things why we, we took him in. But I think a lot of people in A&E were like, Why have you brought him?, because he’s not, you know, he’s not like a, lifeless and floppy, he’s and I was like, No, he’s not well, I know my child. He is not well. And A&E, the ICU consultant said, You did exactly the right thing, he said, Because that is how it presents. He said, It’s like a little niggle, like a little bit of a cold first couple of days, he says, and then it just, once he gets it, he says, it just hits you. And it affected Jack’s liver, it affected his blood pressure. He was on medication for his blood pressure. He was on for liver, he was on constant high fluids for his blood pressure and he was vitamin K for his liver. He had SVTs for so it, it sort of like, and then he went into urinary retention. So it went like around his body I think sort of letting itself be known and luckily when it did we were on intensive care and they were best equipped to deal with it on there.

So what would be a good, an ideal scenario

I think

for parents like yourselves?

having, I mean, I understand everybody’s got to learn, because it was a learning curve for all of us. I mean, A&E generally is fabulous, because it’s the same staff that I’ve known for eleven years and it’s just they’re the ones that rotate through, like sort of the newer qualified think they know everything or they’ve come from adult hospital and it’s totally different dealing with children.

And I think we did used to have what we called a Lifeplan, and that was like A&E had their own notes so you don’t get questioned or hauled away from your child and stuff and I think it’s just someone that’ll be prepared to listen and, yeah, it might have been a subtle change but that sort of change, a massive sort of change for us. Because if, as when we seeing that registrar and she give me a prescription for whatever and I brought him home, he might not be here today. It was only for the fact that there was a consultant there and was like, No, look at what his condition is and look at your patient. That’s what he said to her. Look at your patient.

But the latest one that he’d had you know a cold or, or flu, and also a chest infection and he’d had antibiotics and sort of inhalers and everything. But even despite all the medication and antibiotics he wasn’t getting any better. I’d been sort of looking, assessing him throughout the night, umming and ahhing whether I should go back to the doctors, cos obviously he’d already seen the doctor the previous day. And then in the morning I think it was seven o’clock, six, seven o’clock I then rang to the 111 to try to get an appointment first thing when the after-hours where I live, that’s that particular surgery opens up, and, and then based on how I described of his symptoms they decided that it sounded more urgent, that we needed to go for medical attention straightaway rather than going to see the doctor, and go that way. But it’s, again it’s, it’s very laboured breathing, sort of ribs going in, and, and you can sort of hear it that they are struggling. And you, they just seem quite unwell. My son does poorly very well, so even though when he’s very struggling breathing and he’s very poorly he’s still very active and talkative and quite alert. So it’s really difficult cos sometimes I’ve had the doctor to see him or the ambulance people, and they say, Oh, oh is this the patient? And then oh, and then after when they’re doing their sort of paperwork that they need to complete before they are allowed to leave, then they actually realise you know take readings and Ah, he is really poorly and we’ve been blue-lighted to hospital. So it’s, it’s very tricky.

And when you took her to A&E to see the paediatric doctor, what did they do?

A lot of the time they literally would put her straight on a nebuliser and then she’d have to have another nebuliser. I think she’d normally have around three of them and then they’d try and get her onto the Salbutamol inhaler and literally we had to get that down from twenty minutes to about four hours before she was allowed to come home.

And, so she means that she will spend time. Roughly how often she had to go into hospital?

I think for the first eight years of her life, I think Amy spent every Christmas in hospital. Whether it was just a daytime or whether she was actually in I think one, one year we’d literally done something like seventy attendances in a year.

To the A&E?

To the A&E. So. And the majority of them she did actually have to stay in whether it would be just overnight or a lot longer.

Because of her chronic lung condition. Okay, so. And each time was the same kind of treatment?

Yeah, we literally had the same treatment. Sometimes, obviously, she’d respond quicker and other times it would take a little bit longer.

Okay. Where sort of episodes which were particularly bad or you were particular worried about her?

I think it’s just when she was younger, everything you did worry more. Because obviously having two healthy children before, and then having Amy, it was a case of I’ve done it all before with the others, but they’re fine. But I don’t know whether it’s cos Amy was so prem. You did sort of panic that little bit more. And now I look back at it and I think, I didn’t need to take her quite so many times, probably. But it’s just panic.

But weren’t you told advice by the doctors to?

Yeah. I’d always phone up first and literally say, these are Amy’s symptoms, what, what do you want me to do? Sometimes it will be, give her Calpol and see if it goes down. But the majority of the time it was, take her in first and let them look at her.

We had a couple of occasions where we took him to A&E because we felt he was dehydrated, and if we’d have gone to the out of hours GP they would have sent him to A&E anyway. As he’s got older we’ve tried to avoid A&E because up until recently anyway our local A&E did not have a separate children’s area, you had to sit with the adults up until relatively recently. And inevitably you only went to A&E on a Friday night or Saturday night when it was the worst time to possibly go so we’ve always tried to avoid A&E. So if we’ve ended up in A&E it’s usually because the out of hours GP has actually sent us on there. I think we’ve only been to A&E once in the recent past of his asthma and that was because the out of hours GP sent us there.

Yeah. Okay so now you’d,

Now we’d, our first port of call would be the out of hours GP.

And if, the only time I would go straight to A&E is if they told me they couldn’t see him within maybe a couple of hours of me ringing up.

And what have you found or what did you find at the time when you were there on a Friday or Saturday night that you wanted to avoid? What was it about it?

We wanted to avoid drunk people, there’s a lot of drug addicts people like that turn up you know sort of you know people that maybe are not there because they are genuinely ill, but they are there because of self-inflicted reasons. And unfortunately the louder you shout, it seem to be the quicker you get taken at least out of the waiting area. I had one particular experience when Danny was a baby, he was probably around 18 months old, and it was a night time and he was so unwell that he wasn’t crying. He wasn’t making a fuss because he was so lethargic and we went through the triage process in A&E, they said, Okay, so now wait in the main waiting area. There was lots of loud shouting and people arguing, people commenting how loudly how long they’d been waiting even when it was apparent they weren’t terribly unwell, maybe they’d hurt, sprained their ankle or something. And eventually after what seemed like a very, very long time, which probably maybe an hour or an hour and a half, they took us through into the treatment area,

His diabetes team has made you aware that you might have to call emergency or take him to hospital.

Yes, yes. And we have done in the past. And another challenge is going into A&E where A&E doctors are not familiar with insulin pumps. So, you’re trying to educate the person that’s trying to treat your son, and that is frustrating. But you wouldn’t expect an A&E doctor to know about all the medical equipment anyway that exists in the world. But still, at that time when you’re stressed, you want immediate treatment and you want the care to be fast. Having to explain everything again to a doctor is quite hard. But now we’ve become our own doctors, if you like. You know, we find that going to hospital hasn’t necessarily been very helpful in that, you know, they’ve waited an hour or two to see if his blood sugar levels have come up. You know, they’ve yeah and we kind of copy, you know, what they’ve done and, and treated him at home and we have, you know, we have less hospital visits now, because we’re, we know what to do and we’re less kind of worried, as it were.

To even, you know a cough and cold pushes your sugar level up, a sickness and diarrhoea pushes your sugar level down, I don’t understand how that works, but any other infection will push it up. And obviously with diarrhoea your body produces ketones which everybody does anyway, but obviously with a diabetic it’s more serious. So you have to keep your check on that, so you have to just check, test the urine, and that’s what we had at, at Christmas with, she had a flu type virus because the week before Christmas literally her whole school, well even, I think about 18 children in her class had gone down with it, so I was expecting her to get it. And she developed, started it on the 23rd December.

Oh.

Just not eating, and just wanting to sleep all the time, so I did take her to A&E but they didn’t really sort of do anything. They tested, they did a blood gas and she was fine, but then Christmas Eve she still wasn’t very good. I wasn’t happy because she wasn’t eating and her sugar level was high but I couldn’t give her too much insulin because she wasn’t eating so I was trying to, so I think I just needed sort of some support from them but again I didn’t really get it, so she went home again. Christmas Day I didn’t take her but I was looking for DKA which is Diabetic Ketoacidosis so Christmas Day I was in contact with an actual paediatric consultant on the ward, children’s ward, spoke to her and by Boxing Day she had symptoms of DKA. She had the high ketones, she was starting to vomit, she had the high temperature so she got taken back in and they admitted her and that was all down to the, the flu virus. And she’d had the flu jab as well.

And when you said you were in contact throughout this period, Christmas period with the hospital, was that the Children’s Ward?

Yeah.

Or

No it was the children’s ward. And it was the

Were they half full at the time?

They were because when I’d taken her, I think on Christmas Eve, I saw a junior doctor and she was lovely and they did a blood gas, and she was all, she was okay. It wasn’t too, cos there’s a level I can’t remember what it was but she was just under it, but they gave me the phone number and the name and said, You know if you are worried phone you know and speak to them. We will let them know. So the minute I phoned up I just said, This is blah blah blah. This is what, and they were brilliant and the, to be honest the nurses know her anyway. They all know her on the ward,

Right yeah.

Cos there’s you know, there’s only a certain amount so they all know her like the play lead, specialist. There are a few consultants there that we know that just like cover the ward, cos her Diabetic consultant doesn’t, he’s not normally on the ward.

And when you need to consult the doctors, how long do you wait before you consult the doctor? Or it depends on that specific flu episode?

Yeah. Again, it varies. Sometimes, I think because they’ve got to know Ella now, and that she does get flu-type symptoms quite easily and perhaps quite regularly. And because we have the set-up now, that we have open access to our local children’s ward, and we get to know the doctors and consultants on first name terms, they’re very good. We sort of work together. They tend to just say “Right, come in, and we’ll review her.” And sometimes if they’re really busy, if they’ve got a really heavy influx of patients that need to be seen, then we can be waiting two, three, maybe four hours before she’s been medically viewed. But if we turn up and she’s, you can physically see that she’s not right at all, then it’s usually – we’re, we’re straight in, and she’s on a drip and they’re taking bloods and they’re sorting some of – whether it be IV antibiotics or oral antibiotics out, to get her back on track, and IV fluids. But it can vary. Most of the time it’s usually within the, within an hour or two that we’ve been seen, and either discharged home with oral antibiotics, or if it’s – like the chest infection and the ear infections that she gets sometimes, they’ll say right, we’ll give her a course of sort of IV antibiotics over the next two days, and then you’ll go home with a course of oral antibiotics. So it, it does vary. But usually we’re seen within the first two hours, usually.

Yeah, I think we just guide the doctor in the way of, you know. This is, I mean, there’s been times where we’ve gone to, to a local hospital and you’ve got a, like an on-call locum doctor that doesn’t really know Ella’s case. And I can probably count on one hand the doctors there who’ve just basically [beeping noise] given us what [beeping noise] we’ve sort of said usually happens, will say to us “You see the doctors when you see them, what would they do with Ella at this point, given her symptoms?” I’d say, “Well usually they would obviously do a blood test, make sure her kidney function and everything else is looking okay.” And then if they were okay and she’s still got these sort of type symptoms, generally we would give antibiotics, whether it be amoxicillin or – can’t remember what the other one’s called now. Should do, we have them that often. Is it co-amoxiclav, or something like that?

Yeah, it could be. Yeah.

Yeah. Things like that. And then they’ve just sort of said, “Right, well we’ll just do that then.” And then we’ve ended up coming out a couple of hours later with oral antibiotics. And about four days later, Ella’s symptoms seem to be a lot better than they was when we first went.

And it was really useful for us that they gave us that open access to the wards. That really helped, so. No, I think we were treated really well.

Do they ask you how you feel, or your opinions around certain things?

Mmm. I think because the nature of her condition is, is quite unique, we often know more about her history, about the global picture, than the people we’re speaking to. And they’re more than happy to acknowledge that. And I think that’s one of the things I have appreciated the most, is that they do really listen to us as parents as well. And I’ve noticed sometimes I’ve taken her to hospital with just a hunch that something’s not right, and I’ve never been dismissed for that. And normally I’m right about it as well. And I think I’ve always really appreciated the fact that the doctors have never said “Oh, it’s just an anxious mother.” You know, they’ve always really listened. And have acted. And I think a couple of times that’s been really important for Eliza, that that’s happened quickly. And I think sometimes parents are the people who spot things very quickly. And I think, I get the impression that the doctors know that, actually, I think. A nurse told me once that if – it’s perhaps a slightly sexist thing to say [laughing]. But if you want to know if a child’s really ill, have a look and see how much the mother is panicking. And I thought that was quite an interesting comment, because it shows a sort of attitude of taking, taking the parents’ views really seriously.

Phil: Yeah because I’ve found that if I ring up the hospital and theythis was before he had like antibiotics in December; they were saying, “No there’s nothing wrong with him; he sounds completely fine to me from what you’re telling me.” And I’d ring back the next day and saying it’s not changed and then they’re like, “Don’t worry about it, the doctors are aware of it; if there’s something wrong then bring him in.” I was like, “Well can I bring him in then?” They’d say, “Yeah bring him in on such and such a day,” like two days later. So, I did that the doctor listened to him; he could see he wasn’t right and he could hear in his chest that he wasn’t right, so they sent him for an x-ray. So, that persistence for me worked and he got what I wanted.

So, what are they like then towards you; how did theydo they ask you questions?

Phil: Abrupt

Do they respect your views, your?

Phil: I don’t think they respect our views.

Janet: No, they don’t. It took Macmillan; the last time we had trouble we had to ring the Macmillan nurse who had to ring the hospital to have a meeting with them to explain that when he’s poorly he does not go to A&E.

Phil: Mm

Janet: You know, and when he’s poorly he needs to be seen regardless of whether there’s a bed or not, and it’s just constant fighting.

It starts like any child with a cold, with a runny nose feeling a bit miserable, probably goes off her food a bit. But it does escalate very quickly, within a matter of hours.

Okay.

So where the average child could have the chest infection for two weeks, not taking antibiotic and can move into the lower chest, with Meg within five hours it can go from upper respiratory to lower, lower chest.

And what are the signs that you, you know to look out for?

Fever, fever is the main one because that means that there’s an infection that she’s fighting.

And what, how, what is high? What is, is there a particular?

There is, there is and a lot of people think that anything over 37.4 is a fever, so for Meg I don’t worry at that point. I don’t worry at 38, when she hits 39 I worry.

Yeah.

If I can get it down with Ibuprofen or Calpol within four hours then I still don’t panic.

Yeah.

If I can’t get it down within 8 hours then I know that there’s a problem.

The out-hours GP, who’d I’d taken him to at the crack of dawn about six in the morning after a really bad night, he said, I think it’s pneumonia. You’d better go to hospital and they’ll give you some antibiotics. And this and that and we were there in hospital for the, for about twelve hours, which we were very lucky, we got to come home for bedtime actually, because then you could get some sleep because he was sick. He had a virus. They didn’t give him any antibiotics. They just gave him a high dose steroid and lots of inhaler and he got through it and so it clearly wasn’t, I think it must have been like a just a viral chest infection or something, I don’t really know, but it didn’t need antibiotics anyway.