Clinical trials: Parents’ experiences

 I don’t, no, I don’t think they’re going, there’s no follow-up, they won’t keep checking on her. Six months is the end of it. But I will just be interested to know the outcome in the fullness of time, see what the results were. Obviously very keen at the six-months check-up to get the results of the, genetic test, take full advantage of the appointment with the consultant where he, where they will check Beth over really, really thoroughly, and take any advice that the skincare consultant gives. Particularly if she is showing signs of, of eczema, then at least I’ll feel like I’ll have a head start.

 After the trial was up at twelve months I refused to leave our neurologist. I wasn’t going back to the old neurologist because as you can imagine I wasn’t too happy. And I realised the difference of having a good relationship with your neurologist, somebody who would listen and work with you and not just dictate to you. And Professor is very much one of those where “Okay, let’s work together” and I you build that relationship where you go “Yeah I trust what you say now.” And I actually I’ve got to the stage now where I don’t trust anybody else and I will run everything past her before I even sort of think about it. 

 I regret not pushing harder for the diet, but I don’t think it was available, and I think it was being done badly anyway from, from families that I’ve spoken to, that were that had tried the diet beforehand, said, “Oh no, we tried that and it didn’t work.” And I’ve said, “Well what did you actually have to do?” When I’ve looked into it closely I’ve realised the diet was done very badly. And that’s why it couldn’t have worked. There was a plethora of drugs on board as well as the diet. 

 The trial, like I say at the end of the twelve months you were supposed to go back to your own local centre and a local dietician was supposed to liaise with the trial centre, but look after and monitor the child. Dieticians around the country wouldn’t touch it. They just went, “Ketogenic Diet – not a chance. I’m not touching this.”

 Well, I mean I suppose, I feel that I would quite like to know the outcome of the trial and to see, you know, to see what then they will change as a result, if anything. Because I guess things may stay exactly the same. But it will be useful to know that, you know they had assessed everything and then decided that they would stick delivering information in the same way. But apart from that, no real feelings as it ended, you know.

Because obviously they’re going to have to do something with this information, aren’t they? Otherwise it was pointless doing it in the first place, wasn’t it? So then if it is something to write up for the children to read, then, yes, it would be helpful, wouldn’t it? If that’s what they’re, doing with it. To say, “Well, you could be feeling like this, but don’t worry. So are other children of your age group.” I should hope that’s how they were going to use it. Because if Chloe could have got given something like that, “Don’t worry. You might be scared. You might feel this way or that way. But this is how these other children feel as well.” But I’m not really sure in what way they’re going to use it really.

 No, it was a six month thing where she was injected for six months then it gives cover for I think three or four years they said. And certainly even though I don’t know the results I just anecdotally think that whatever she had, helped or we were just particularly lucky. Because certainly for the first four years of her life you wouldn’t have known that, she was a lot less ill than people had predicted she would be. People had, you know when she’d seen the cardiologist they had said that she would need if she got a cold it would hit her hard etc and none of that happened so. You know at one point I actually started thinking maybe they’d got it wrong and there’s nothing wrong with her [laughter] a bit of wishful thinking I mean because she was doing so well, you know, it was impossible to even contemplate that she would need open heart surgery she was doing that well so.

 No, no, I think, I mean because the trial, like it was quite a while afterwards the results took to come out. But I remember phoning up and saying was she covered by the swine flu because we hadn’t heard. They’d given us a date, I can’t remember what the date was, they’d given us a date and said that you should hear by this date. And I’d contacted them and said, “We haven’t heard.” And they said oh it’s because, I think the postal strike, there was a postal strike on or, so they said “We will contact you.” And they did contact us. And then they phoned again to check that everything was okay. So it was; they were very informative. Yeah.

 I think Toby will be relieved not to have to take eight tablets a day. But then maybe he’ll just go on to one tablet a day or what, whatever the dosage is for the medication. I don’t think it’ll make much difference to us, because it’s not a major thing to take medication in the morning and in the evening. I know it is for, for children. But I think because he’s got used to it and he knows that it could possibly lead to something that’s going to help him, I just don’t think it makes that much difference. Sort of two seconds out of your life, isn’t it? So, no, I don’t think it’s going to make much difference at all.

 It was, for three days she had to chew this cotton wool as soon as she woke up. And on the third day, that afternoon we went to the hospital and they did the, the test. And it was the following morning that we got the phone call to say, “Come straight back and, and we’ve got medicine here for her.”

I think that’s, that’s quite a nice thing to think about, that it is actually your child, this is their results. 

Yes, it is, yes, no, definitely. Well, actually what’s interesting was when we had all the scans for him at the hospital, they print out and they give you a copy that they give to the doctors, and actually he’s got them all, I think tucked away in his red little book somewhere, and found it really interesting, I mean to, percentage of body fat and all the rest of it. And, you know, and I feel, well, it’s important though, you know, they are his [results] I was quite kind of pleased that he took them into school. I don’t know what anyone made of them, but he took them into school. And he has asked questions about his blood, you know, “Where does it go? Where’s the lab in the hospital?” You know all really relevant questions that need to be answered. Because it’s quite a bewildering thing really, “Here’s mum and dad. We’re going to sit you in a room and, you know, let some, you know.” It is, it's a difficult thing for a child. And of course you manage it and the hospital manage it and we make it as nice, but you know those are real questions. Now fortunately for us it, we haven’t, you know, it’s not been too much of a drama. But, you know, it could be, it could be very, very easily, you know. And the other two children have had to watch that as well quite often if childcare has been a bit cobbled together and not there, you know. The, yes, middle child has watched the eldest one having blood taken. You know, and okay that’s fine, you know, but question, you know, you do have to have answers as to, you know, why we do this. And actually we’re doing it for the good of others we think really. You know, it’s a hard thing for a child to understand, you know, it’s very hard. It’s a hard thing for lots of adults to understand but, you know, it’s a hard, it’s a hard thing for a child to, to grasp.

 And also it’s a day off school, and actually as you get older that starts to matter more, you know. When you’re little and you’re 4 or 5 it, you know, it’s not such a big deal. But actually as you get, you, as you get bigger it, you know, it, it’s a bigger, it’s a bigger deal. And I think also part of me thinks, you know, our child is fine. He had this very difficult start to life, not that we don’t want to dwell on it, because it’s part of him and it would be wrong to, to write that off, but actually you do need to move on as well and say actually, you know, “This is where we are as a family. We do growth hormone. For us it works and it works very well. You know, I would recommend it because it’s worked very well for us. We haven’t had any difficulties at all with it. I, you know, that’s where we are really, you know.” So it’s a kind of, it’s psychological, you know, “We’ve done that. We draw a line, draw a line over it and kind of we move on now really.” And it is nice not to have hospital appointments hanging over you. When you look in your diary, “Oh, right, okay” you know, to have that kind of freedom is actually, you know, no, it is nice. You do feel quite liberated from, you know, from many clinic appointments.