I think, I mean generally speaking absolutely everybody that you come across in the hospital from the people who weigh him when we go up to his general allergy clinic to we had students, one of the times when he was in hospital, he was about 18 months old we had a couple of students in and it was the funniest thing ever cos they, they were scared to death of touching him. And they kept, this one he was perhaps 15 months old and this one person was talking to him like a fully grown adult and saying, Thank you so much for letting me examine your chest. And it was just and they were lovely, they were lov-, and generally speaking people are particularly with children I think. They’d go out of their way and you know. And as long as people explain things to children. You know, this is a stethoscope. You have seen one of these before haven’t you? Just occasionally you come across somebody who doesn’t take that time and it can be such a different experience for the child. And it, it’s. I know they are pushed for time and they’ve got a million things to do but that extra bit of time with the child I think is really very much appreciated by the child and the parents. And I think it makes their job easier in the long run as well because no one wants to be holding down a struggling child and taking two people to do it.

And any advice to health professionals?

Listen to parents. Listen to parents. I think it’s, I think it makes their job easier if they listen to parents. I mean I’m not that parents are always right and I’m sure they sometimes have to deal with some very difficult parents but I think it helps if the lines of communication are open both ways and you feel like you’re being received as well as, and involved. And I think in the same way as I try and involve my child in his illness it, it’s the same. Obviously the health professionals know more than I do but if, if I’m feeling involved then it helps me to do what they want me to do [ha] in terms of managing my child’s illness. And, and if you know why you are doing something it’s a whole lot easier to do it or deal with it even if it’s like we were saying earlier, antibiotics or steroids, you’re worried about it but you’re not going to take it and not give it to them because you know why you’re doing it cos you feel that you’re part of the process.

Initially when you child was diagnosed with asthma when he was initially diagnosed with asthma and, [interrupt] with asthma and all his other allergies were you aware or were you made aware of the other concerns regarding sort of flu-like illness and its impact on his underlying conditions?

I think yeah it was, it was quite specific though. It was one of the [hospital] doctors that specifically had the discussion. And he was the one who initially said, Oh you, I highly recommend you to sort out a flu jab for him cos up until that point no one else had mentioned it. So

Ok. And did they, anybody sort of, any doctor or nurse tell you about what you should like or you should look out for early signs and symptoms of a flu?

Yeah that particular, that one particular doctor again he did say. Because he was explaining at that point the symptoms of the asthma when he thought we should seek medical help. And also as you say to look out for the early signs of, of flu-like symptoms because he was more likely to, obviously go on to get the asthma symptoms if he had the flu-like illness first.

The flu vaccine thing has been quite a frustrating one for us because they first suggested he should have it must have been when he, the first or second time we were up in A&E. So he must have been around 14 months old, something around that age. And [ah] when I approached the GP she said she’d have to look into it more because of the egg allergy. And then she actually phoned me and said he couldn’t. There wasn’t an egg allergy-suitable vaccine for children and he couldn’t have a flu vaccine which was a bit disappointing and a bit worrying. And I thought, well that’s odd because surely the consultant who recommended it up at the [hospital] must have known if there was or wasn’t. So eventually I saw another GP but it, it took a while because first of all I took a while to think about it and then when I saw another GP about something else I said, Oh and by the way can I just check. And then I was told, No there was an egg allergy-suitable vaccine for children. But that it was a specialised thing and it would have to be ordered I think they said 12 and they didn’t need 12 in their practice. So what they would try and arrange was to order it with another local surgery and then, or even two and then split it. And so that took quite a few months of messing around. So I believe from memory that he didn’t have it for two years and then by the third time they had. I had to go and see them again and talk to a receptionist and ask about and the practice manager and ask about getting the vaccine in. And so then he had the, it was a jab which he had for a couple of years at the GP. But each time I had to contact the receptionist and say, Look it’s about that time could you please get it organised. And it would take quite a long time to sort out. But we, he did have it and then last year he was involved in a research project up at the [hospital] where they gave him the, they gave children with egg allergy the spray that all children now have, just the same spray as everybody else. And luckily that was fine. He didn’t have any adverse reaction to that at all. So they advised that this year he should be able to go to the GP under normal circumstances and have the spray that all children have. So apparently they’re not recommending that necessarily for all egg allergy children at this point but because he took part in the study and it was ok then it’s ok for him but they are still working through the results and the recommendations I think for all children with egg allergy.

But so there’s a lot of plans that you make and things that you’d try and do and, and things that you want to do and the trouble is it’s so unpredictable. And it happens so quickly. He can be absolutely fine one minute and then as you say because of the underlying conditions he’ll get something that will just be a sniffle to anyone else and you can, you know that it’s going, it’s going down. It’s going the wrong way. And the two things that have saved us with that other, the medications that having the prednisolone at home in my hand and not having to go and seek it, and having the montelukast which if we’d put it in early enough seems to stop. Because, you know it was very unpredic-, with that ending up in hospital every five min-, and we ended up in hospital on holiday, visiting people, you know it was just, it was just you, very very disruptive and I was in hospital all down in [town] near [city]. And so I was staying with him and [partner’s name] had to come back to work and [partner’s name] works shifts anyway. He’s a train driver so he couldn’t really not go into work and he, and he works shifts so it’s not easy even if he can know when he’s available or not available. And so the whole being in and out of hospital thing was, was really difficult and made things very difficult as a family just to do anything that a normal family would do from holidays down to visiting people and trips and things you plan.

And, and also his, his relationship with other children because if you’re constantly having to say, Oh no I know we said we’d come to the park but we can’t because he’s not well. And I know, oh sorry I know you were supposed to come around to play but you can’t because he’s not well. And then and children get fed up. You know, they’re fickle things [ha]. And if the happens a few times they think, oh well I won’t bother with him them [hah]. Cos you know there are other children I can play with who actually will turn up.

And if there is a bad case of influenza at school, at his nursery what do you do? Do you try to keep him at home or there’s no point?

I’ve tried. I’ve agonised about that one cos the feeling of dread is, well ok well these other children might get flu and it, you know, it will be a few days of them feeling bad and it will be water off a duck’s back whereas if he gets it. But I’ve come down in the end on balance to saying, you know, I think it’s not, it’s not really practical to keep him away. So you just have to let him take his chances and if there is something going around he’ll probably get it and there you go [ha] just like all the other horrible things that go around.

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.