Well I think what would probably make life a little bit easier is for people to stop being apologetic for what they’re trying to do, because they almost come across as like you know Really sorry to ask you thi you know and they’re almost afraid to ask, you can see when they’re coming in to do it that they’re afraid to ask the question because they think Oh, they’re in a traumatic tim you know. And the feedback from the nurse that was running the Chip Trial at [hospital] is You know I wish more doctors would get would ask parents to take part, I wish more doctors would actually get on board with i and I think they’re almost afraid to do that because either a) it gets in the way of what they’re trying to do or they think it will or they’re afraid they’re afraid of what the parent might say. You know just get on with it almost.

I suppose they deal with so many parents every day, like you say…

Every parent is different etcetera.

…and you have a lot of experience which and some may not have so maybe?

Yeah, I appreciate that but when you’ve got when you’ve got somebody coming in to ask you to do something they’re almost building that apprehension up by Really sorry, I don’t like to press you, you know would you like some time to think, you know, I’ll leave you, I’ll give you, read tha stepping they’re almost leaving information, stepping away as if to apologise for what they’re doing and it’s well just ask the question, tell me what it does. Tell me what it does and you know, yeah its fine, if I have any questions I’ll ask but.

I think one of the things they talked about a lot was that these things quite often happen at an absolutely crunch, critical time. You know, you have a child, a baby in a neonatal unit. I mean your life quite often is in terms of crisis. How then you begin to make a decision, if you do make a decision, and how best it is to approach parents, and what information you give them and what information you don’t give them. And how much somebody needs to know is probably different to the person in the next cot. And I think also for us a big thing was how much you trusted the doctors. Which sounds an awful thing to say but, you know. And personality plays a part, you know. Is it somebody you like? And you are trusting them with your child’s life you know and you don’t have a choice about it. It’s a choice that’s forced upon you. And I think that has a big part to play. And I think I hinted at that at the beginning on the atmosphere that’s created. Certainly I felt more than happy with the level of care we had, which I think was what has endeared us to kind of be part of things. And, and I’m sure had that not been there then I wouldn’t. But I think trust is a huge thing, you know, a really huge thing, and how doctors build up trust with parents. Which they need to do anyway, but actually if you want a parent to sign a form you’ve got to work twice as hard at it as well.

How they choose to communicate. I, I never felt, I have to say I never felt if I didn’t do the trial we wouldn’t be treated well. I never ever felt that that came in to the equation. And I jolly well hope it wouldn’t. But I never felt that. So I felt we were making a choice. But how freely you make that choice, I’m not sure. Because I think subconsciously

at some level you must surely think, Actually if I agree to this, then I’m being compliant, I’m being a compliant patient, maybe I get better care. And I know it doesn’t work like that, but I’m sure, I, I, you know, I don’t know how free I am from that thought and how much, it, and I think that’s quite a natural thing, isn’t it, you know. Oh, I don’t know, maybe it is for me and my personality. But, you know, if, if you agree to what somebody’s doing, life is going to be better for you. Because generally it is, isn’t it? And I’m not, I really, I really don’t know how much that has a part to play. Even though I’d like to think that for me my choice was entirely rational, I doubt that it was, you know, I really do.

Yes, I mean if it has to be done there and then, I’m wondering if they should contact you not there and then, do you know what I mean? if they should agree to make contact with you. They probably wouldn’t get as many people signing up. Because you sign up there and then, don’t you? And they need people to take part. And it doesn’t bother me. I mean if it had been a drug, you know, of course I would have asked hundreds more questions and it would have been a completely different decision for me to make. But it wasn’t. So it was a paperwork decision, so it was not a difficult decision to make.

I think just really for him, not really for me because I did understand things, I think sometimes some of the things how they bring it across might help other people by their terminology, they use for things because some parents might not understand certain things.

What type of things?

All about the growth hormone, I can understand, I, like how it works and things like that I think like some parents wouldn’t actually understand or know why they’ve got a deficiency and about the injections and things. Because the leaflets and things they do give you are quite hard in reading, but I suppose because I’m, can understand some things where I think certain parents wouldn’t be able to.

So in terms of what you mentioned earlier about the tests and not knowing quite what they were so, like you say, to having things explained…

Yeah, I think it’s just the…

with what it means?

…just the explanation and things sometimes people don’t understand.

So do you think the, the leaflets that they give you and the information that’s provided could be perhaps simpler?

I think so, more easily read for in terms what some parents would be able to read.

Sometimes you just need to break it down, don’t you? [Yeah.] In simple bullets?

In bite size bits.

That’s good. And if you could change one thing then to improve the experience, would that be it, or would there be something else if you could change anything about the whole experience?

Just really more information which you could understand a bit more.

Yes. I mean my feeling probably is, and I don’t know how right I am, is if you looked at social classes of people who take part in it, I am sure people who are confident and articulate and probably, I’m guessing, fairly well educated are more likely to take part in something. I don’t know what the social spectrum is. I, my guess is if that is the case then there should, somebody, people somewhere should be working really hard at trying to get that group that maybe are less reluctant to for a whole variety of reasons. And that’s where thought and money should be put into.

Yes, I think if the trial, which is where it perhaps needs to be explained more, if the trial is related to not just whether you get this pack as opposed to not a pack, but whether, what you get in the pack, then, yes, it would perhaps be helpful to have some questions. But I’m not sure if the questions were for Saskia she would care. She doesn’t read up about, she knows about her illness, she manages it herself, but she doesn’t read about it because she doesn’t want to think about it all the time. Children don’t really want to read stuff.
I think when they come to teenagers.

Yes, they’re not interested, are they? They just deal with what they need to deal with to get through the day. they’re not really bothered, are they? They don’t want to talk about it all the time.

I think, looking back now, I probably needed, not that it would bother me, but only now talking to you, a greater understanding of what we were actually doing, do you know what I mean? as in, Is this about what goes in the information pack? Or is this about whether you get the information pack I can’t really remember. So when you’re in hospital, when you’re in hospital doing that at the time, you’re also doing lots of other stuff. You know, you’re worried about what the results are going to be for your daughter, you’re doing the blood tests, you’re coming out of school, you’re going there, do you know what I mean? That, that, I’ve got to be perfectly honest, is the last thing to concern me, because that isn’t actually affecting Saskia’s health at that point. At the same time you’re being weighed and measured and blood sugars and diet and health and, you know. So that is just something that took some time at the end.

Well, I guess the only thing would be maybe to explain a bit more how the questionnaires related to what they were trying to get out of the trial really. Because as I, as I said earlier, it, sometimes I thought, Well, I really don’t know why they’re asking thi related to the topic of the, the trial. But, so I think that would have been perhaps useful. And also the follow-up. So, you know, informing us of the outcome. Obviously we’ve only just finished, so there’s time for that to happen. But there was no mention that that would happen in the near future. And I should have asked. But I think that would certainly be useful for any trial.

So when is the follow-up?

Well, we go back in another three months. But I’m not sure whether the, the research lady will be there, because presumably she’ll have finished collecting all her data.

So what happens at the follow-up?

Well, at the follow-up we just have our normal appointment with the consultant. And I guess at that point if, if they’ve had the results of the trial then maybe things will start changing for us, you know, the sort of information and things like that.

If there was a way of improving that whole experience that you had, do you think there would be anything that could be improved in future similar trials?

I can’t think of anything, because it was so quick. Only the booklets that I got in the beginning. Because I was going to diabetes, managing diabetes and it was difficult to fill in, fill in those. And she was not also in the school and most of the questions were when she is going to school.

So some of the questions weren’t relevant?

Yes. So, so maybe the questionnaire should be according to the age.

Yes. Then at that moment the brain goes blank, because she’s not going to school, whether to fill in, or whether not to. She was going in the nursery, so she wasn’t in the school but she was going to the nursery. So whether to fill in the form, question, or whether not to. Really difficult to decide on the, them. Because it was related like homework, school meals, things like that. So it was difficult.

I couldn’t really see why it couldn’t be done at your local surgery as such; there were certain parts of it which could have been done locally to save you. Because it’s not that much of a journey, it’s 15 miles, but it’s still that time of year, winter time when you have to you know, pack up, and it would have been easier to have been done at your local surgery. But that’s just me being picky really.

Yes, I think so, yes. And also I think it makes you feel less of an oddity in an area of medicine which is already very specialised. So you’re in the minority anyway, and then you become more in the minority to be eligible for this trial. So, you know, you feel like you’re, you’re dealing in small numbers. Now that might not be the case, but I think it’s quite nice when you feel connected to a wider community or actually, you know, I don’t know, There are a hundred people in the UK doing this trial You know, that, that’s nice.

I don’t know if it’s already done in certain studies, but I suppose if it was a, a potentially harder study or, or maybe in the early days of this study even, I might have benefited from being able to chat with other people who were taking part, maybe on an Internet-based, you know, a web-based thing. So I could have, you know, said, We, our baby isn’t really enjoying not having any clothes on while we oil her to begin with. Is anybody else experiencing this? Have you got through it? Is it, is it getting better And just, potentially just help each other out a bit on the, on the tough times. I suspect in other studies that that might already happen. And it might be very very helpful if it’s a, potentially a less, less pleasant thing that, you know, something with more side effects or something where you’re constantly worrying about whether you’re doing the right thing. Then, then a little bit of support from, from other people in the trial might be useful. Maybe that, maybe part of that is because, because it has to be, maybe it makes it more scientific if you’re not talking to other people. But, but potentially it, depending on the circumstances of the trial, there might be a little bit of that. Because I could always have, have rung the, the, the people involved in the trial and said, Oh, I’m having this trouble And I’m absolutely sure they would have given me lots of moral support. But it was just a thought.

And what they were interested in was really as a parent, how it, what it feels like, and actually what they can do as staff to ease any anxieties which, which comes about. Now the trial was actually stopped as it happened, so it was actually quite a short period of time that kind of, yes, reading all these emails and things. And I think kind of one of the things that was flagged up then is the confusion of names for parents. You know, it’s meaningless. it’s not meaningless if you’re a medic but, you know, if you’re not it just adds to confusion. One of the big things you talked about was mortality and how you convey, you know, at the end of the day a parent wants to know whether their baby is going to live or die, and, you know, and how you convey and how you use those terms. So, yes, and it was to do with insulin and neonates with a low birth weight in, in different hospitals all around. So, but the doctors, as far as I know, that were heading the trial were all based in [area].

So this is for another trial?

Yes, this is for another trial, which we weren’t part of it. It was just simply whether we’d be a parent representative. Which I think is a really good idea. The downside of it is the meetings are quite long. And I think in this case it was a group of absolutely lovely consultants meeting, who would make you feel incredibly welcome and really value your input. You do it for free, and it has to come at the right period of time when you feel you can do that. But I think it, in essence, it’s a really, really good idea because I think it’s very easy to lose sight, you know. You have all your tables and all your statistics and everything, and that’s how it needs to be of course. But actually there is a parent with a baby at the end of the day, and it’s a personal cost to them, you know. And nobody wants to be a, seemed that they are a set of figures or a box that you can tick. You know, they’re a person. And I think, I think the point we made was, was, was really, it was, it was just trying to encompass parents’ needs. Having said that, the feeling I got from reading through things and certainly talking to my friend who went to more or less every meeting was that people were incredibly thankful for parents who took part and actually had the utmost respect, respect for them. So it wasn’t a thing you did, you know, and it was brushed aside. They, they were absolutely, you know, grateful and, and, and really respected that.

It’s, and some centres are very good in all fairness, and they’ve certainly got better since this trial has been published. They will turn round and say, Well there is this diet you can have. Unfortunately there’s a long waiting list, or there’s this or that but some centres are a hell of a lot better at actually acknowledging there is this treatment now.

There are some centres that really, oh not centres, doctors. This is individual. it’s a whether they like it or not, whether they want to pursue it or not. Whether they feel it’s a valid treatment or not, I don’t know, I still can’t get behind the mentality of that one. As far as I’m concerned it can help a lot of children with intractable epilepsy and normally you will see a result within three months. And three months is not a long period of time, so I can’t understand why this isn’t being used more. Apart from lack of resources, We need a dietician etc, etc. But when you’re putting kids forward for a surgery such as VNS, which is more expensive than a diet, then I, that argument goes out the window as well. There is something to do with charging back on the costs, so do we start treating patients or are we just interested in our budgets, but that’s just something that’s with me.