OK. I think our communication, right from sort of meeting the doctor here, up here and down to the specialist hospital I think they were all wonderful, I really couldn’t fault them. they had time for you. I think they know what you’re going through, they work with these children with heart disorders every day and, I really couldn’t fault them. They were there for us, they answered our questions, they were there emotionally for us as well. You build up a relationship with them and they were friends towards you. And I just felt that there was genuine care from them really and the support, I really, I couldn’t fault it, I really couldn’t fault it. They really were excellent.

Father;There was a lot o; terminology on the letters that we received, obviously were going straight for the dictionary. [laugh;

Mother;Yeah and they weren’t in the dictionary, were they; And things that you didn’t know [Father;Right] And they were always feeling for his liver and I’ve never know why they felt for his liver [Father;Hmm] and they would say in the report, two centimetres, something, something and you wouldn’t know what that meant [Father;No] why should his liver be there and his what was it, hands and feet are not clubbed, well what did that mean.

Father;Terminology to the doctors and the specialists is everyday language, [Mother;Yeah] and when they’re talking to each other sometimes, you think they’re talking a foreign language. You’re just sitting there not knowing what they’re talking about and they come, they use numbers and letters and…

Mother;Yeah, and like the heart beat things and two fifths and did,…oh, I don’t know, it was just.

Father;With all the good will in the world, they haven’t got time, when they’ve got 20 other children to look at. They haven’t got time for you to keep stopping them, interrupting them, although you want to because you want to know all of the details, what does that mean? That the doctors and they’re under such pressure to get through that day. So you can’t keep interrupting them because so you’re stuck in a dilemma, that you want to know what all these things mean because they don’t, you don’t get a piece of a paper, which would be nice, a list with all the terms on it so that you could look.

Mother;I think they are quite, I think the new heart book;

Father;Yeah, yeah, but…

Mother;It’s got those in.

Father;…but when you’re just going into it, in the first time, you haven’t got the heart book, you only get the heart book afterwards sort of thing, or during. On your first appointment, it would be nice to have a little piece of paper that tells you all the things that they’re talking about. [Mother;Hmmm] You know the terms.

Mother;But they often, like, tell you don’t they to take notes or something about what they’re saying but you feel too silly to do something like that, sitting there writing it down, but you forget don’t you, what you said… and then…

Father;Well a lot of the things are a blur.

Mother;You just perhaps are so shocked by what they say; you forget to ask what it means or something like that.

Mother;I would probably say ‘I have to tell you these things because you need to know but it’s very uncommon. I, think some people who are very clever at their jobs, their bedside manner is not very good because they’re, they detach themselves from it. And doctors would say ‘Well that’s the nurses are there for. I’m also saying it as a woman but, if he could have possibly said to me, ‘Look, [parent’s names], ‘This is going to happen, this is going to happen, this could happen, this is one of the side effects, this may not, but we need to tell you’, but no he had to tell us but a little bit more human perhaps. That’s, because were, were looking at him, hes holding our child in his hands basically, all of them are, just come out of that doctor’s thing and be human perhaps.

Father;But again it is different when he doesn’t know us from Adam. I, again I think hes better now because we know him better.

But again, I think the other thing is different people want different things [Mother;Hmm], I was quite happy with him in a way [Mother;Being straight] straight whereas [my wife] would have been a bit more, so it’s difficult to actually say to the doctor’s well this is what you’ve got to do or this is what you haven’t got to do because everyones different aren’t they? So it must be pretty hard for them at the end of the day. No doubt about it.

And the other funny thing was when the consultant came who was going to be doing the operation, that was the first time that wed met him, and he walked on to the ward and I was holding Miriam and she looked at him. She looked him up and down and said ‘nice coat’ and had us all absolutely in stitches. The way they can just break a moment. We were all stressed up to our eyeballs and she said ‘nice coat. It was a tweed jacket, as it turned out, it was very funny. Slightly threw us all. He was lovely, looked much younger than we were expecting him to be, but then we saw him wandering around the corridors. Once we left to go and wait however many hours it was, we then saw him talking to other parents in the corridor and things. And every time we saw him, which was twice, we kind of looked at him and thought shouldn’t you be operating on our daughter? But he saw us, recognised us and said, explained the situation, which was lovely for somebody to, he needn’t have bothered, he didn’t need to explain himself, so that was a lovely touch.

And he had a lovely conversation with my husband as well about his family and hes got children and how difficult he perceived we must have found it. And little touches like that, lovely, really, really nice.

Cannula, right cannula. So they put this cannula in for Vikram in case of emergency they won’t have to start looking for veins at that point. So they put that in and they bandaged it all up.

Now that’s the first time weve been in hospital. Weve never been in hospital before. We won’t know what a cannula really is but they told us what the cannula and why it is bandaged up and all this. We didn’t know that, for example, that had to be redone every day, re-bandaged. But it never was bandaged, or it never was re-bandaged, it wasn’t done up again. For 3 days it didn’t happen. Now each time, he would lie like this and when he vomited his milk out the milk would go on that bandage, some of it would soak through, seep through more and more and get soggy and a bit, after 3 days the thing starts stinking. So we go to the nurse and say, ‘See that’s thing is stinking, can you do something about it?’, ‘It’s not my shift. ‘Ok. Fine can somebody do it?’, ‘Yes. One day goes like that then somebody comes and says ‘oh has nobody been doing anything about this?. Weve been crying our hearts out for somebody to do something about it. ‘Okay, then somebody does. And you see this guy’s hand all shrivelled up and it’s bad. And it’s so bad, the way it’s all become soggy and wet and obviously you’ll see that if your hand is. I say ‘oh that’s pathetic’ That’s not pathetic, the service is. That’s what I mean when I say, the nurses job is not just a job. I mean they are doing their job, they are coming, they are bandaging, it’s not that they’re not doing it but it’s more than that. It requires some patience and it requires some dedication and some responsibility. Not everyone can become a nurse. They should be, anyway.

And when you go, when one person finishes a shift, he has to ensure that the next person who is taking over knows, or rather the actual take-over, the actual transition is very smooth. They have to ensure. Half the time we have to go to this person and say, ‘This is what happened in the previous shift, can you do something about it now?’

You would think that was the basic, that was what you would expect and if you have to fight for that. Again, they have done a great deal for us. I mean they have, obviously they have helped our son.

I think, again it’s really difficult, because it’s not their fault and no matter what happens it’s not their fault. They can’t take your grief and your pain away. And I think sometimes we expect them to and they can’t. But I do think it would be really helpful for the consultants to get some sort of training or some sort of guidance on giving a diagnosis to parents. Because it is such an awful time. That the way they give the diagnosis, it could maybe in my case it was given really badly, it was a really negative bad experience, Because the doctor clearly had never done it before. And the doctor was really distressed, and he was really upset and I was really upset and it was a really horrible, horrible, horrible time for everybody, And I felt sorry for the doctor never mind myself. And I think if hed have been given some training on how to give me that diagnosis it would have been a lot better for everyone concerned. And I felt bad for him really, because it must be awful to tell parents this is what’s wrong with your kid. And then, I don’t think they’re given any training in how to do it.

One of the things there is supposed to be, it’s improving I think. So how would you have liked for him to have told you?

Well first of all I’ll tell you the way he did tell me. He just sort of fidgeted and was like “Oh, god, I don’t want to tell you this but I’ve got to”, “Oh this is really awful, how do I tell you, oh I’ll just blurt it out and tell you, your son’s got this condition and it was just… now if hed just sat us down really calmly like he does this every day. “I’m just going to tell you what’s wrong with Joe, and then I’m going to go away for half an hour while you have a cup of tea. And then I’m going to come back and talk to you and I’ll ask any questions and well tape it so you can take it home and that would have been great and he could have told me and I could have sat in the room with [my husband], had a cup of tea, and then thought, oh, and if hed come back half an hour later and said now I’m going to tell you again, and I’m going to tape it and I’m going to write it down and then you can go home and then well meet again in a week and you can talk to me then or you can talk to some, anybody, it doesn’t have to be him. I know they’re busy. It doesn’t have to be him. And well meet again in a week, and we can talk again.

That would have been great in an ideal world but I understand they haven’t got that time. And, or have you? It would have made a big difference I think. I think the fact that I had nothing to bring home, other than my memories and my memories weren’t clear. Because all my memory was, was fear. I think in a very, very, very, distressing situation having to rely on your memory is not a good thing, not for the hospital and not for the parents. And certainly not for the baby. So that needs addressing I think.

They always used to sort of tickle his tummy while they was listening to him and say silly things, doctor’s looking in his ears, they used to say ‘Oh weve carrots growing today, Luke or ‘Have you cleaned you ears?’ They always used to play with him and ask him what hed been doing either at nursery or at school. Ask him about his home life and his food and ‘Have you been to MacDonald’s?’ and ‘Where are you going on holidays?’ and ‘What are you doing today?’ They always had plenty of time for Luk; which is, I think really important to build a relationship and it felt like wed got a relationship with the doctors rather than just going to see a doctor. They’d always got time for him. Wev; some of the time weve seen the doctors down the corridor and they’ve stopped to pass the time of day with Luke to build Lukes confidence with the doctors, I think is extremely important and they definitely had Lukes confidence as well as our own.