Well it was because you could chose and they did them on Saturday’s and Sunday’s so we elected to go into the city on a Sunday when it wasn’t very busy and we could park. And actually we ambled about and had a little walk so it was, we made it into a fun experience we took Will to look at some things and so you know it was good.

So that was a Sunday as well?

It was yes.

That was good then.

It was.

Flexible. If it had been in the week, would that have made a difference if it had been in the week day daytime in the week?

It would have been because both my husband and I work for the NHS Trust with commitments to patients and it’s difficult to then change things. And Will was at school in his final year at primary school so, I’m not saying we wouldn’t have done it but it would have been a lot more tricky.

And also with them with children in the research I always stress to the families about how long each visit will take. Because it could be that they’ve got other children and got to do a school run so it’s important to make sure that we explain to families how long the visits going to be, try and make them at the beginning or the end of the day or wherever’s appropriate and after school if necessary. And so I think parents just presume if we say can you come at nine, that’s the only time so it’s important I think for parents to say, you know, I’m working, I’ve got other children, when will the visits, is it likely to be, how flexible can you be. Sometimes you can’t be flexible so if there’s only a certain test done on a certain time on a certain day, it has to be that way. But as nurses and research nurses it’s important to explain, it may be inconvenient but that, it’s that time because it has to be that time. And I think most families accept that, but we must try and be flexible, you know, for the families.

In terms of the medication for the trial, did she have to stop any of her other medication? Or was, she wasn’t?

She wasn’t on any.

So how often does she have to take, what is it? Is it tablets?

Yes. She has three tablets of a morning and three tablets of a night. And she has her diuretics of a morning, and then she’s in the loo every, all day.

Does she remember to take those?

Oh, she does, yes. She’s really good with her meds, she’s really good.

So they’re kind of easy to take, are they?

Yes, they’re only small tablets.

Are they? And then it, they, you go back every sort of, or you get a phone call to say?

Well, we go back every month. But she’s been getting her bloods done every fortnight. And then if they need her to come in, as I say, this month they haven’t said to go back in a fortnight. So fingers crossed, they’re not there till the end of the month.

And does that sort of process, how long does this go on for? So how long is the trial? Does it change –?

Four years.

Four years? Does, she’ll be on this for that time or does it change at all?

No. It’s, they stop the treatment after two years and the, then the thyroid can either right itself, there’s a 50’50 chance that the thyroid can right itself, or there’s a chance that it will carry on. And then if it carries on, there’s a few options that they can go through. They can remove the thyroid. She can have the iodine drink to burn away the thyroid, or they can carry on with the block and release.

So will there be sort of a, did they mention at all what would happen after the two years or at the end of the four years?

I think they’re just going to wait after the two years to see what happens. But she will carry on with the thyroid trials for the four years. She’ll see the nurse for four years.

Does it impact you at all? You know, because it sounds like there’s a lot of visits and things like that to hospital.

Oh, yes.

How does it impact on you?

It’s hard, it’s hard. For the first couple of months it was like one or two appointments a week, and then it lessened to fortnightly. We’ve got, where are we now? August, we have about five appointments this month and we’ve got two for September. And we’ve got a couple in, one in October and a couple in December.

Does it take long? I mean are they quick appointments?

Some are. The eye specialist that she sees now with the, because she, with the Graves’ disease the eyes protrude. So she’s, they can take up to about four or five hours, because they have to put the drops in her eyes and they check her eyesight and they do blood tests on her while she’s there, in and out. The last appointment she had, I think it took about four hours.

And I mean does that, so when you go, is it just like a one-day thing or do you, is it, do you have to go more than that? You know, is, does it, because if it takes all day, it’s a lot of a day out, isn’t it?

Yes, it’s a long day.

We did agree to that with a little bit of reluctance really I think on my part, thinking, Gosh, I, oh, I really don’t know. But we did it for a year. Which meant extra bloods being taken at certain hospital appointments, but they would take blood anyway then. It just meant that they were going to take an extra two; I think it was an extra two vials for their research. And it meant blood pressure being checked more often than they would do normally in the first year. And we had a DEXA scan where they look at your body mass. Now one of the reasons we went ahead with all this is because we live ten minutes away from a major teaching hospital, so actually turning up for appointments and agreeing to these extra things was fairly minimal in terms of effort and getting there. You know, I can park on a friend’s drive and walk with the children and we can play in the park afterwards. I mean for us it’s fairly easy, it’s as easy as it gets really. We’re not travelling miles to, to do anything.

After the first year we then agreed to continue to have extra bloods taken. And also they do this day assessment where your children have to fast and they measure your blood glucose levels, and this extra scan. And we agreed to all that, knowing that we were having more tests than was absolutely necessary, with an overview of, Well, actually it’s going to be of benefit medically in years to come, but there’s actually no benefit for us now because it’s just an extra set of bloods, it’s just an extra test. So we did, we, we’ve done that and we’ve actually decided to stop now. We, we’ve come to the end of that period and they asked if you want to carry on and we’ve said, No; the reason being that our oldest child is eight and he’s at an age where he doesn’t want to have blood taken, and actually now he doesn’t need to have his blood taken. I think it might just be once a year, if that, or something. You know, we’re really down to the minimum, minimum things with the whole, the whole thing. And actually he doesn’t want to. And so that’s fine and I have to respect that.

And it takes time because you have to carve out a day to go into hospital for all these tests to be done. And actually with three children and working it’s slightly more than I kind of feel I’m willing to give. So from a totally selfish point of view I just kind of think, Well, actually, no, we, we, we’ve done that. And there’s a point now where I want to say we’re not going to do any more. And I think it’s mainly because of the discomfort now with an 8-year-old, where actually you have to explain everything to them. You know, You’re giving blood because you know. And that’s a, that’s a hard thing to do. And so we’ve decided no, also what was happening in order to juggle with the childcare and working I think my husband was taking a day off work. And we’ve actually decided that, you know, Okay, we’re going to call it a day and not be of any more help to you. I’m sorry about that. So that’s the growth hormone trial.

Well, we’d get there, and they’d take her blood I think to check for levels it wasn’t a sort of an instant thing or it wasn’t waiting for results or, I think it was to check if she got any antibodies or anything in her bloodstream. They would then inject her with whatever it was; they were injecting her either the placebo or the proper drug and then we have to wait for the hour. And then they take more blood, whether it was also to check for levels or, but certainly it was quite, it was quite time consuming. Only, I mean it was one day every, I forget when it, there was about four to six weeks, I think there was a window which we had to go for four to six weeks, it had to be done in that time because it’s not just a one injection thing it’s a series of injections that these children get. And I think that they so it was time consuming I think the fact that I was on maternity leave helped and things. Had I been at work it would have been more of a hassle trying to fit it in but the fact that I was off, it sort of just worked out quite well, you know, so but I suppose if you had been at work and you didn’t want to take part you could have the excuse of saying sorry I’m at work [laughter] whereas I had no excuse [laughter].

And then after two weeks, two weeks of being enrolled in this trial, I must admit I sort of delayed the start of the diet because it was so involved and because there was the paperwork to go with it and because I really wanted to do it right and I’d fought so long to get it, I kind of delayed starting it for a month until, I waited until Matthew had started the summer holidays because he was six weeks at home with me then and I could monitor him; I could watch him every minute of the day. And I cleared all the decks at home, I literally got, I had ironing piles that I got rid of, just everything and I thought, Right, if I’m going to do this, I’m going to give it one hundred percent And that’s what I did.

The diet was daunting at first when you’re given all this paperwork and all these meal lists and I must admit when I looked at it I was like Ahh, God you’re going to have to be organised with this And then the first few days of the trial I think or the treatment it felt like I was in the kitchen kind of eight hours a day, producing these tiny little meals. And I can’t live like thi but you soon get into the swing of it and Matthew just; and when you see the difference it makes to your child then it just motivates you even more.

So you know we got to the twelve month, the three months part the follow up appointment and Professor turned round to me and she said What, do you want to continue him and I just looked at her and went yea and she said Right now we start drug weaning And then like I say then the drugs started to come out and I got this beautiful, beautiful little boy left. But the trouble is he’d suffered so much brain damage because of the seizures he’d had before that he’s got scarring all over his brains so he’s very mentally disabled. But saying that you know after six months I got called Mum Mu for the first time and even now still at fifteen if, when I go to get him off the bus I get Mum Mu and he comes up for a cuddle and he’s so kissy and he’s so flirty. And we were on the trial for a year and we had a three month follow up and we had a six month follow up where he had to have an EEG and I had to submit papers at every one and I had to chart his progress and I had to fill in seizure diaries and food forms and ketone recordings, all those kind of things and it was great.

I suppose something that I kind of would want to hit upon, kind of we talked a little bit about financial implications. Obviously you’re not, paid to do a trial and it’s something you do voluntarily. And that’s strange. And I wonder if you were paid to do something, whether that would change your attitude towards doing it, and whether parents should be paid. You know, is it right to be paid to take part?

There is a debate there?

Yes, you know, is that right? And do your motives change? And actually would you get more people signing up? Or would you actually get less, because it’s then perceived to be more riskier if you’re being paid to do something?

That’s the problem.

So, yes, I just think that’s an interesting question. And if we’d been paid to do these things, how, how would it have affected our decision? I think for us it would have been wrong actually. And I think it needs to be something for the trials that we took part in to be done voluntarily. I think it would have been very wrong for money, because the motive becomes wrong and it changes. And also you perceive it to be something that’s risky because you’re being paid to do it. And I think it would be wrong. But I think it’s an interesting question to ask. You know, do you pay somebody for giving their time for something that actually could be hugely important, you know.

What about the young people themselves? Do you think it’s important to pay them?

I almost wonder, yes, I don’t know. Maybe. Yes, I mean maybe for an 18-year-old it is appropriate to be paid to do something. You know, maybe that is hugely important. And it would be interesting to hear what young people have to say about that actually. Because my feeling is that it’s very different and that’s a very different picture. Perhaps it is right, you know, especially if somebody is, has ongoing treatment and it’s something that they’re, you know, commit themselves to doing for x number of years, you know.

I think I’d be very split. There’s a big part of me that says, N that you shouldn’t be giving any sort of coercion to take part in a trial. And then there’s another part of me which is the researcher saying, But we need participants. So if that encourages participant. But, no, I think ultimately, I think it’s unethical to provide any form of payment. So I think it has to be on a subsistence type. I don’t think it would be appropriate to ask somebody to volunteer because they think they’re getting money from it. So, so no, that’s the bit that wins. It would be, No, I don’t I think its fine to provide, I think its fine to make it as easy as possible for someone to be able to take part. And if getting childcare, for example, or buses or taxis enables them to do that, then, yes, I think that’s a good idea. But I think they should just be having costs covered rather than being given payment.

No, because it was a voluntary thing. And I wouldn’t expect it in a child anyway. And I think I wouldn’t expect it. Because I, I’ve had friends that have done clinical trials before on medication that, that isn’t on the market, and they’ll get a one, one-off fee for spending five days in hospital. This isn’t like that. This is medication that’s already being used in treatment. If we had have been offered a payment, I wouldn’t have done the trial.

Well what happened, we went into the whole thing not expecting any reimbursement not for travelling, anything and it didn’t matter to us. As it happened in the last appointment Will was handed an envelope which was his expenses and it was £30 and he was absolutely delighted, he was saving up for something at the time and it was totally unexpected. And I have to say that I feel personally if when they were looking for people to take part in this trial if it had said there’s a monetary reward it would have made me feel well people perhaps doing it for the right reasons. And that’s an awful thing to say but I think it was very good that it wasn’t mentioned, you know, and nobody knew until the end really.

We’ve received some vouchers. My daughter’s received some vouchers. And I, I don’t remember them saying at the start that we would get them. But they’ve given her a voucher each time we’ve, we’ve filled the [questionnaire]

Was that each time you went to the clinic [Yes.] and complete, you completed a questionnaire?

Completed a questionnaire, and they’ve given her a voucher, yes. So that was quite good. And I don’t remember them saying at the beginning. They may have done. But
Do you think it’s important that the young people receive something?

I don’t think it’s important, no. Because I think in a way they should do it for the potential medical benefits that it might give, even not to them, to others with similar conditions or who’ve been through similar situations. But I think it’s nice. I mean it’s only a token. You know, you’re not getting paid hundreds of pounds or anything. But no, I think it, I think it’s nice that they appreciate that you’ve done, you know, sat there and done these for them. But I don’t, I don’t think it’s, it should necessarily be that you get paid or compensated for it really.

I think most parents have said that, that they wouldn’t want it to be in the information. it’s nice to have it afterwards. [Yes.] And a voucher is better than perhaps money?

Yes, yes, I think so, yes.

I’m just thinking in terms of possibly encouraging young people to take part in these things, whether it should be upfront or whether it should, better at the end?

Yes, I don’t know.

How did your daughter feel when she received?

Well, she was nicely surprised, yes. Yes, it was nice. She was pleased.

So we get our car parking fees back, which they did very, well the cheque always arrived in the post very quickly. Obviously compensating you in terms of time is slightly harder to, to quantify. And I guess like many parents you do give up chunk, chunks of your time. And I guess we’re not the only people who, you know, who would, who would say that at all, you know. You do very willingly give up big parts of your day and reorganise your day. But the bigger picture is down the line. it’s not immediately here in front of us. And so I think you have to keep that in mind and think, Well, the treatment we’ve got actually, if somebody hadn’t been pioneering and been willing to have done this ten years ago, well, we wouldn’t be here no you know. And that’s very much how it seems to work.

Chris’ Not for those trials, no. In fact, no, for none of them was there anything mentioned. I have to say I’ve never pursued and wouldn’t have taken it had it been. And I think they’ve probably picked that up in the past that we weren’t in thatBecause it’s quite, that specialist hospital, because it deals with so many children and some of them are vastly worse condition than Sarah, I know they do have a system where you can go to, there’s like a cash office and they do give assistance. And it is notifiable around the hospital for parking and travel and things. So I think they’d be like, it, because it’s not a general hospital, I think they know it’s available if you choose to take it anyway. But we wouldn’t have bothered anyway, would we?

It, do you know what? I think it would have been a lot more. The hospital is quite a distance from, from where we live and it’s, it’s not been open long, so it’s in the centre of town which is quite hard to get to, especially when you have a baby that you have to drag with you as well. I think it would have been extremely difficult to get back and forth to the hospital. But because Daniel had such a good team of doctors and nurses they came here. Apart from his original, his original one, they didn’t, we went to them. And that’s where they did all his height and his weight. And then the second one, which is when we went to get his tablets, that was like visit three, we went there. But they came to the house for the other visits, to bring him his tablets and to take his empty bottles away. So, rather than having to trek, which is, and it’s a good hour drive. It probably wouldn’t be with traffic, you’re probably looking at about 25 minutes without traffic. But there’s always traffic in town. So it’s a good hour drive, and then to find parking and, it’s, it’s quite a good few hours trek round, all round. But they came here for most of it, apart from his begin-, the beginning and the end. So, and they, they phoned as well, to check on him. So they, they made it a lot more easy than what I would have thought it would have been if we would have had to do his checks at the hospital.

To be honest it wasn’t I kept insisting that they gave it to the children’s heart unit. Because at that stage she was having cardiology appointments about twice every two weeks and having all the echo’s and by the time we’d had cardiology appointment about six qualified people had in some way or other they had some involvement in her care. Whether they would have been a dietician or the echo lady who does the echo or the ECG lady or the cardiologist or the nurse and so getting £7 for parking £7 for petrol or something in the days when petrol prices were slightly cheaper [laughter] seemed almost to me not being, not insulting towards me but insulting towards the hospital that I would even consider taking their money when they’ve given my child so much. And they’ve got at the hospital the children’s heart units got a fund and I just said please put it in there don’t give it to me. They made me sign for it to say that they had given it to me because they still had to get me to sign so that they could put the expenses through. So it was all paid for by the drug company it wasn’t paid for by the hospital. And the nurse was seconded to the drug company she wasn’t actually employed by the hospital and but it still just didn’t feel right taking money.

So did you give money to them?

Yes I did as a, but in saying that had I been like my mum who when I was a child my mum was a teacher, a single parent for her the money would have been a necessity, you know. I think if you had to pay the money, I was fortunate in a sense that I didn’t need the money. But if there was a point where I needed the money it would definitely have helped, you know, so I can see that having your expenses paid would definitely help so.

Yeah that’s why I’m saying, yeah I think he’d quite like that, well also you see we, not that we did it for that, because we didn’t know that. When we first, after the first meeting they said, And obviously we’ll pay your travelling expenses for doing the trial So, and we said, Well make it payable to our daughter And it wasn’t, it was, it was minimal, it was really just to cover the petrol and the parking. And our son said, So she’s getting paid as well as that she’s not going to die from Swine Fl. Oh is that all you think about is it. So when the cheque come through in her name he went, Here we go Yes, tiny tiny amount, but yeah. [But it’s something.] Yeah well it did, I mean but they obviously wanted you there at, they didn’t tell you that at all in the beginning that’s what they were going to pay you, so it was only after you turned up after the first one, they said that we’ll pay you a small amount for your expenses.

Yes, oh another thing that parents do ask and I always stress and then explain to them because sometimes parents are embarrassed to ask is about travelling expenses. Because if you’re coming for a study where there’s lots of visits it may be that it costs you money to come that you wouldn’t normally spend so there may be extra visits for the study. So in the information sheet if we are offering travelling expenses it’s important that that is in there and that’s one of the things that should be in there if we are. And it may be that parents make the decision to whether they’re going to take part in the study or not on the cost incurred to them.