Fflur - Interview 49

Age at interview: 12

Age at diagnosis: 11

Brief Outline: Fflur was diagnosed with overlap connective tissue disease with features of arthritis, scleroderma and dermatomyositis at the age of 11 years. She recently took part in a study to find the best way of taking blood samples.

Background: Fflur aged 12, is Welsh, and lives with her parents, brothers and sisters. She attends a local school and loves to do crafts in her spare time.

More about me...

Fflur aged 12, is Welsh, attends a local school and lives with her parents and five brothers and sisters. When she was 11 Fflur was diagnosed with overlap connective tissue disease with features of arthritis, scleroderma and dermatomyositis. Recently she took part in a study to help find the best way of taking blood samples. This involved having blood samples with injections and a blood spot test that involves a simple pin prick to the finger.

The study lasted for three months. The first month Fflur had a blood sample the usual way and a pin prick sample taken at the hospital. The second and third month Fflur did the pin prick test at home using a special kit supplied by the hospital. She also had blood samples the usual way when attending her routine clinic appointments.

Fflur had to wash and dry her hands before doing the pin prick at home and make sure her hands were warm. She did the pin prick on her middle finger then had to apply a sterile plaster to protect it. She then had to allow the blood sample to dry overnight out of sunlight, and place in a special card called a Guthrie Card and put it in a wallet. The wallet was sealed in another special bag called a Ziploc bag that was posted back to the researchers. All the kits, postage and packing were provided by the researchers.

Fflur enjoyed taking part because it helps others and having a pin prick is better than having blood samples taken with needles.

 

The information explained that the study was about different ways of taking blood samples. Fflur...

So how did that happen, tell me how they invited you, did they talk to you or give you information?

 

They gave me like a leaflet and stuff and they talked to me about it.

 

Yes and is that at one of the routine visits that you have?

 

Yes.

 

Yes, so when they, was it the nurse that invited you?

 

Yes.

 

One of the nurses yes. And what did she say to you, I mean how, did she have to sort of you know, sweet talk you or how did she come, how did she approach you, or what did she say to you can you remember? Not exactly but just...

 

She just asked me to just take part.

 

Take part yes and, and did she tell you there and then about what the trial was about?

 

Yes.

 

Yes, what, can you remember what she told you, what it was?

 

That I have to take a pin prick every month for three months to see if it works, to see to measure the count of methodrexate.

 

Okay is that methotrexate?

 

Yes.

 

Is that the medication that you have?

 

Yes.

 

Yes. And did she give you, so she explained what they wanted to do; did she tell you why they were doing it? Did she explain the purpose of the trial to you?

 

Just because the pin prick was easier than taking blood every month, every month.

 

Okay so was it that; is that how you normally have is it, when you’re tested do you normally have blood taken?

 

Yes.

 

So are they trying to find a better way and a nicer way?

 

Yes.

 

Yes, do you like having blood taken?

 

No.

 

No. Do they have to take a blood sample ever time you go?

 

Yes.

 

So the trials about instead of taking pints of, what looks like pints of blood they just want to take a pin prick, is that on your finger?

 

Yes.

 

Yes, is it more than one finger or just one?

 

Just one.

 

Just one, and is it just a simple pin prick?

 

Yes.

 

That’s it. And that’s much easier isn’t it?

 

Yes.

 

Yes and did they give you something to read?

 

Yes, yes.

 

And tell me how, you know, was the information easy to read, was it a big booklet or what was it like that you had?

 

Just about three pages and a leaflet just telling me about the thing they had to do.

 

Why was it, you know, why was that, what made you say oh yes I’m happy to do that?

 

Because if they find out that it works it’s a lot easier just to take a pin prick every month than taking blood.

 

All the equipment was provided and special envelopes to send Ffleur's blood spot tests to the...

Just, I have to just take blood every time you go. And the pin prick I just have to do it for three months.

 

Just for three months?

 

Yes.

 

But how many times did you have it taken, how have you done the pin prick?

 

Three times I think.

 

Three times, so was that a visit every time?

 

No, I did it once in the hospital and then I did it at home twice.

I took blood in the hospital and the pin prick and then the next month I went to the doctors to take the blood when I did the pin prick at home and the next month as well.

 

Okay, so over the three months, so it was month’s later that you did yes?

 

Yes.

 

The first time was blood taken then it was a pin prick of blood?

 

Yes.

 

And then another pin prick of blood?

 

Yes.

 

And you did the pin prick at home?

 

Yes.

 

So how did that work then did you have to put it on, how did, was it tested if you did it at home?

 

I had to squeeze blood off my finger onto a piece of paper and send it.

 

Ah okay so now I see yes, see how I need you to tell me? So you did that and they sent did they give you all the sterilised needles or something to do it with each time?

 

Yes.

 

I have to put it in the fridge or in a cupboard overnight and then you have to send it.

 

So it had to go all the way over the sea?

 

Yes.