Ann - Interview 57

Age at interview: 43

Brief Outline: Soon after Emily was diagnosed, Ann was invited to enrol her daughter in a randomised trial on improving the treatment of Grave's disease. Ann discussed it with Emily and they agreed to take part.

Background: Ann aged 43, is White British, lives with her son and daughter, and works part-time. Her daughter, Emily is aged 12, and was diagnosed with Grave's disease when she was 11. Grave's disease is a rare condition in young people and means that Emily has an overactive thyroid.

More about me...

 

Ann aged 43, is White British, lives with her son and daughter, and works part-time. Her daughter, Emily is aged 12, and was diagnosed with Grave’s disease when she was 11. Grave’s disease is a rare condition in young people and means that Emily has an overactive thyroid. Emily also has a heart condition that is thyroid related. It was a very frightening time for all of them. Soon after Emily was diagnosed, Ann was invited to enrol her daughter in a randomised trial on improving the treatment of Grave’s disease. Ann discussed it with her partner and Emily and they agreed to take part.

 

Ann received plenty of information although it was difficult to understand some of the medical terms. Anything Ann didn’t understand she asked the doctors. Ann was keen to enrol her daughter because she hoped it would help her to understand the condition better and because it could help others with the same condition and their parents too. She understood that her daughter would be randomised to one of the treatment groups, but she was happy and says that it is “all trial and error.

 

The trial is for four years and Emily has been in the trial for four months. Ann is really pleased at how well her daughter is being cared for and how they have tried to make it as easy as possible for her and her daughter to take part.

 

Ann would consider other enrolling her daughter in trials in the future.

 

Coping with her daughter's diagnosis, it was hard to take everything in, but Ann didn't mind...

And how did they explain, you know, what was, be involved and that to you at the time? Did they give you information and that?

 

We were given a little pack of little information and stuff. And they, I had a quick read through it. I’ll be honest with you, I haven’t read it fully. But it’s, I don’t, like I understand bits of it, but you do get a bit side-tracked as the days go on. You think, “Oh, I’ll read that later” and you forget all about it.

So they explained the purpose of the trial to you and what was involved? Did they talk about what potential side effects at all?

 

Oh, yes, oh, yes. They, they really, they went through everything with me. Some of it registered at the time, some of it didn’t. But as the weeks have gone by I’ve picked up odd, like little bits and bobs. Because when you, when you find out that your child’s ill, nothing sinks in first. It just goes in one ear and out the other. Because you’re thinking, “Oh, my God. What’s happened? What’s go-, what’s going through?” “What, what’s going to happen next?” is, you know, the scariest. We didn’t know about the heart. We didn’t think that she’d be rushed in to hospital with, with heart problems. And it was just, “Oh, my God.” It just . . .

 

Was that before the trial or after?

 

It was just after.

 

Just after?

 

But we didn’t realise. Even now you forget the severity of it.

 

Is that common to have a heart complaint as well with the thyroid.

 

With the thyroid, yes. Everything, she’s got, I don’t think she’s skipped, a symptom. She’s got the eyes, she’s got the palpitations, she’s got the mood swings, hyperactivity, a heart problem, the tremors, everything. And it’s frightening. And it, it’s, it’s hard to watch, really hard to watch your child go from an active 11-year-old in to a child that you’re watching 24/7. It’s just…

 

So how old was she when she was diagnosed?

 

She was 11.

 

And how old is she now?

 

She’s just turned 12.

 

Did you have any questions at the time? You know, when they were going through the information and the trial to you was there anything you wanted to ask or is there anything you wished you’d asked?

 

No, not really. At the time my head was just so chocker with it all, it just didn’t, nothing registered.

 

And did you mind being asked at that time?

 

No, I didn’t. Because, as I said, if I can help somebody else go through what I had to go through that day, and then these past few months, it might help somebody, it’s a bonus, it’s a bonus.

Ann was keen to help other parents and their children who may be diagnosed with Grave's disease....

Well, we just got, we just noticed a little lump on Emily’s neck. And at the doctor’s the next day we got a couple of tests done. And she was rushed in then, over the next week or so to get more tests done. We found out she had an overactive thyroid. We didn’t know the consequences of an overactive thyroid. But it’s frightening. It is that, yes, it’s frightening. You don’t understand it at first, but you get used to it. And then we went to do the trial, which, they randomly picked a treatment for her, to see which would be better to treat Emily, or to treat anybody really. Because they don’t really understand it. And we’ve just gone from there. She’s been rushed in hospital one time. Her heartbeat was 158 beats a minute. Which was quite frightening. It’s all thyroid related. She had, she’s got a, a heart condition, and her heart swells and she’s got fluid round it. But she’s dealing with it. She’s getting there. But, as I say, it, it is frightening, because you don’t understand it.

 

I can imagine actually. It must be quite, you know, how much they understand and how much they don’t understand.

 

Yes, well, I don’t think she fully understands the severity of her condition. She just thinks it’s one of them, the mood swings come along and her heart races and she starts panicking. And she doesn’t understand that if she does calm down her heart will calm down a little bit. But it will always be faster with the thyroid than without the thyroid problem. But she’s getting there.

 

And at that point, because it was soon after the diagnosis, they invited you both to take part or invited your daughter to take part?

 

Yes.

 

So how did that feel at that time? Because she’d just been diagnosed and then you know the trial and…

 

Well, to be honest with you, I was all for it because I didn’t understand it and maybe with, going through with the trials I would understand it a little bit more. And it will help other people. Because, as I say, you don’t understand and you don’t realise what comes with the thyroid problem. And if you go through the trials and you get explained different things, different times, it helps. It really does help. And the nurses with her and the doctors have been absolutely fantastic. I couldn’t ask for better treatment. It’s just, because you’re on edge all the time, and when you speak to the doctors it lifts it a bit. So you’re a bit more relaxed. So you get to understand it that little bit more.

 

So was that one of the key reasons for taking part, do you think?

 

The key reason was if I could help somebody else understand and get through it, the better it is for everybody. Because it’s so uncommon for a child to have an overactive thyroid, that to understand it, you need to do these trials. You need something there to help other people and help yourself. So, fingers crossed, we’ll get there.

 

Ann described randomisation as ‘pot luck' and ‘trial and error'.

Did they talk about all the randomisation and that and things like that?

 

Oh, yes, yes, yes, they did.

 

And what did you, what do you understand about that?

 

It was just basically that there’s different ways to treat it, and there’s no right way to treat. So if they can treat different people in different ways and then they can find out which is the happy medium. And, fingers crossed, they can use the one treatment for everybody. And hopefully they’ll find the right solution to it.

 

Did they explain that she might be in one group or another group and how that would work?

 

Yes, yes.

 

How did they explain that to you?

 

They just said that there was a couple of ways of treating it and they just randomly pick one. And, fingers crossed, it’ll work for Emily. And if it doesn’t, they’ll try something else.

 

And did you mind that, being randomised in to --?

 

No, no, because at the end of the day whatever treatment they try, it’s all trial and error, with any illness. You can’t say, “Right, this treatment will suit you and that treatment will suit that person.” It doesn’t always work that way. It’s all hit and miss.

What do those terms mean to you?What does randomisation mean to you, if you had to explain it, to another parent?

 

Pot luck. You just, you just, you just go, just go with the flow. At the end of the day if they randomly pick a treatment for you. All right, it might not be the best treatment for you. And they can change it. But it’s best if it gets, everything is trial and error.

 

Ann takes her daughter to the hospital every two weeks for tests, but this may change to once a...

So tell me about what actually happens, what’s involved in the trial.

 

She just goes, every couple of weeks she has her bloods taken, her height, weight. They check, as I say, they check her bloods. And just basically going in, having a little formal chat with the nurse. And she loves going. She loves the popularity of it. Because she, it’s so uncommon, she gets the, “This is, this is Emily. This is my little Graves’ child.” And she loves it. She loves the attention.

 

And is it regular? You know, I mean is it, do you have to go every..?

 

Well, we go every two weeks. Well, we’ve been going every two weeks. Hopefully this month we might have a break and go monthly. We haven’t had a phone call yet. So whether we’ll get one. Fingers crossed that we don’t.

 

So is that part of the trial? You know, how does it work then, the trial, what actually happens?

 

They just check her bloods; check her height and her weight to see how she’s gaining, just basically to see how she’s doing, how she’s coping.

 

Do they take any samples, blood samples or anything?

 

Oh, yes, they take her bloods every, well; they’ve been taking bloods every fortnight. Just basically checking her well-being and how she is.

 

So what are the, you say it’s a drugs trial?

 

Yes.

 

So what is it about the drugs? What’s being randomised and what’s actually Emily on?

 

Well, she’s on the carbimazole for the thyroid. And they, she, they’re doing block and release with Emily, which, they block the thyroid and then slowly release it to find a happy medium. So when the thyroxine goes up, the medication will go up. When the thyroxine comes down, the medication will go down.

 

And how does that work? Do you have to, who monitors that? How do you know?

 

It’s a blood test monitor. When she goes for a blood test they check this. And like they said that the tablets that she’s on, they can cause side effects. If she gets a sore throat at any time, accompanied by any blisters, she has to go and get her white blood count sorted and checked, because the carbimazole attacks the white blood cells cause problems with the medication. It can end up producing a sore throat.

Ann and her daughter sometimes have to leave early in the morning to attend hospital appointments...

 

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.