Shelley - Interview 17

Age at interview: 37

Brief Outline: Shelley has a history of complications in pregnancy and lost her first two babies. She is grateful for the care at a special unit for high risk pregnancies, so she was very willing to take part in biobanking research there.

Background: Shelley is married with two children. She is a full-time mother. Ethnic background/nationality' White British.

More about me...

In her first pregnancy in 2001, Shelley developed severe preeclampsia and HELLP syndrome (Haemolytic anaemia, Elevated Liver enzymes and Low Platelet count). As a result she also experienced placental abruption and lost her first baby. In her second pregnancy she had moved to another part of the country and was referred to a specialist unit for high risk pregnancies so she could be monitored closely for signs of preeclampsia. Unfortunately she developed different complications and also lost the second baby. However, the quality of care they had received at the unit was so good that she and her husband decided they would try again, knowing that the unit would be there for them. She feels if the unit hadn’t been there, they would probably not have had the confidence to try again. She now has 2 healthy children, born in 2006 and 2010.

Because Shelley feels so much gratitude and trust in the high risk pregnancy unit, it was an easy decision to make when she was asked if she would take part in a pregnancy research biobank. There was very little involved for her, mainly giving extra blood and urine samples when she was attending hospital anyway for an appointment. The fact that the professor who had cared for her in her third pregnancy was leading the research was particularly persuasive for her. She trusts the staff to treat the samples appropriately and use them for whatever research is necessary. If they choose to share the samples with other research teams she trusts their judgement on that.

Shelley has mixed feelings about other kinds of medical research, especially if it is invasive or involves personal risk (and even more so if it involved any potential risk to an unborn baby), but recognises it is necessary to test things, including in animals and in human beings. But donating samples is so easy to do she almost feels it should be something routine that people expect to take part in.

 

Shelley thought the information was 'open, honest and transparent'.

What kind of written information did they give you? Was it clear and easy to understand?

 

Yeah. Yeah, absolutely. It just outlined what they were going to do and the reasons for it. It seems like an awful long time ago since being four months pregnant to now having a six-month-old. A lot has happened in my brain since then - or not happened perhaps [laughs]. But yeah, never did I read it thinking, “Oh this doesn’t make sense.” Or, “Hm, perhaps that’s …” It always just seemed very open, very honest, very transparent in the information that was there.

 

Can you remember what they said about how they were going to use the samples?

 

Do you know, I don’t know if I can. Isn’t that awful? I know it was to do with preeclampsia in pregnancy, but the exact specifics I don’t remember. I’m not suggesting that it wasn’t there in the information. I don’t recall the specifics although I’m sure I was told [laughs].

Shelley took part because she was so grateful for the care received during her pregnancy. She did not feel her participation made any difference to the level of care.

And it was with my last pregnancy, which will be our last pregnancy, [laughs] that we were approached by a research midwife who asked me would I consider taking part in a research study for the professor who - she only had to mention his name to me and I was happy to do it. There was just no question. He had been amazing when I was pregnant with [my first son]. And then although he wasn’t as directly involved with our last baby, there was just no question that if it was a research study, if he thought it was important enough to do research on, there was no question that I wouldn’t be happy to be involved in it. It made no, it made no difference to the level of care I received, as in it wasn’t, you weren’t made a different priority over anything or moved down as priority. And it was just really, really simple. There wasn’t no question that I would never consider doing it. 

Shelley has taken part in research about high risk pregnancy as a way of saying thank you for safely giving birth to her children.

We then took a long, long time to decide whether to have another try for another baby, which we did. And they had always said to us, “If you ever have any more, we will have you back as a patient.” And I always say I’m really lucky, but I’m unlucky to have had - I wish I’d never had to know about the high risk pregnancy unit, but I’m really, really, really happy that they’re there. Sorry, it makes me feel choked up. Because there’s no doubt in my mind had it not been for them, we would never have tried again, because we just knew that, knowing that they would take us back and the care that we’d get from them, as we’d already had, would just, was second to none. So, yeah, like I say I’m sort of, fortunately unfortunate to have come across them. And they were just wonderful.

 

I mean, units like that will always have to exist, I would imagine, unfortunately - but there’s a purpose for having this unit. And the fact that a lot of the money comes from donations and sponsorship and things like that, so that these studies can be done, that - to me - I could have almost not refused. Because it sort of like validates why that unit’s there and why people need the information and why the research is so important. And even if just helped – well, not even if - but if it helps one person have their baby, then fantastic.

 

So it’s like a sort of giving back for what you’ve had from them?

 

Yeah, definitely. I mean, I [sighs] I’m sure my friends and family get really sick. I’m like, “Anybody need a charity to do this for, do that for?” And we support them. Nothing will ever be - in my opinion - nothing will ever say thank you to them for my boys.

Shelley thinks donating blood and blood samples for research is like giving a gift, but is not so sure about other bodily fluids.

Does ‘gift’ sound the right sort of terminology for giving blood and urine samples to you?

 

Not urine [laughs]. Because I can’t imagine that anyone would want to make any use of that [laughs]. “Hello, happy birthday.” I do think with blood - I mean, because I’ve had a platelet transfusion in the past I’m no longer allowed to, I’m no longer qualified to give blood. My personal opinion on giving blood, having been the benefactor of it - and I think a lot of these things come out of seeing the work, or seeing how they benefit. I mean, lots of my family give blood and I’m like, “If you can, just go.” “Oh I don’t like needles.” I’m like, “That just doesn’t wash with me.” I would say, “Go and do it.” My personal opinion is anybody who can give blood, please go and give it.

 

And I do think that is a gift because it saves lives. I think people think with giving blood it’s just about people who’ve been in accidents. And it’s not, it‘s for so much more, you know, cancer patients and things, and it’s so easy. I do think blood is a gift. I’m not so sure about other bodily fluids being gifts [laughs]. But, yeah, definitely, blood is definitely a gift if…

 

Even if it’s for research purposes?

 

Yeah, I don’t see why not. I think because I’m always amazed at how much information they get out of how little. I mean, I would with all of, with my last two pregnancies - I mean, there was blood taken all the time, every time. And they’re like, “Out of this they’ll take like a hundred different things.” And I think for such a little thing to be able to gain so much information is invaluable.

Shelley doesn't really agree with animal research, but says you have to weigh up the pros and cons. It would be difficult for someone not to take a drug that works just because it has been tested on animals.

And you said you weren’t that keen on animal testing?

 

Mm.

 

Do you have strong views about that, or is it just one of those ‘necessary evil’ kind of things?

 

No, I do. I’m a vegetarian, so I obviously don’t eat animals or fish, so I wouldn’t want to see - and I do actively make sure that I’m not buying products, you know, makeup and things like that, that are tested on animals. Yes, so it’s not just a ‘because it’s trendy’ kind of thing. But, no I wouldn’t want to be advocating that, or supporting that by perhaps doing studies that would run alongside that. But then it’s very difficult. Lots of medications are tested on animals.

 

Well, that’s the difficulty, isn’t it?

 

Mm.

 

I mean, in a way it’s now quite easy to sort of find products that you can be sure haven’t been tested on animals.

 

Mm.

 

It’s quite difficult to find drugs that haven’t been tested on animals, I guess, but. –

 

Yeah. And I think there is again the risk versus benefit that has to be - that just sounds like I’m contradicting myself. It’s a can of worms, isn’t it?

 

It is. And I don’t think many people have the answer, really.

 

No.

 

I think most people feel quite mixed up about it, and unsure where to draw the line.  

 

Yeah. It would be difficult to say that if someone’s got an illness that can be cured by a medication that’s been tested in part on an animal, to not take that would seem ridiculous. But then you’ve got to look at both sides of it, haven’t you, and think that’s the risk and benefit, isn’t it?

Shelley explains that as the media often don't put stories into context, they can have a detrimental effect on the good work done in hospitals and tarnish reputations.

Do you have any views about how the media kind of represents medical research?

 

Well, I think it’s like anything that they represent. I think the Internet is a wonderful thing, but you can trawl an Internet site and find every side of a fifty pence piece’s opinion on it. I think that those sorts of thing get blown out of all proportion, mostly. They don’t get put into context. They don’t, generally don’t get put into context. And they’ll do it as a headline a lot of the time. And I think, as we were saying before, I think then it sort of can tar a hospital or a certain section of a hospital with the same brush and it can put them back a step, I think. And you think all of the good work that everyone’s done, and then perhaps one individual might have jeopardised all of that. And again that, I’m sure that affected their funding and any sponsorship, any sort of charity fundraising that they do. But, yeah, I think it’s like anything that you hear on the news. I think you have to sort of weigh up your own opinion and think, “OK.” And if you came across the institute that they were then perhaps talking about, wherever it is, you would have to take it on its own merit of what you see. I’m a firm believer in thinking you say as you see and as you find. And, yeah, I think a lot of those are done for headlines.

Shelley said that finding out the study results was not an important factor in her decision to take part.

Did they say anything about whether they would give you feedback about the results from the research?

 

No. I’m sure that information - perhaps if I ask, but I think the study was quite long. And I didn’t do it with that in mind, for finding out if that helps, because I know research can take years, it’s not just an overnight thing. No, that wasn’t something that, if they did tell me it wasn’t something I thought, “Oh I must remember. Yeah, I’d love to find out about that.”

 

Would you like to find out at some point?

 

I wouldn’t not want to. If it came up and they said, “Oh, you took part in this study, by the way here’s an email with the results”, I’d be like, “Oh that’s interesting.” But yeah, it wasn’t a deciding factor or a point that was of particular concern to me.

The research midwives always treated Shelley 'professionally, with a personal touch'.

Well, if they all had the team that I was lucky to come into contact with they’d be very, very lucky. I think they were just super professional, non-invasive in the fact that they knew my history and knew what a sort of emotional and sort of trying time it can be for me. It was always very much kind of like, they were never in your face with it. It was always done just really professionally, yet with a personal touch, if that makes sense. The research midwives would not see me from one month to the next, and I’m sure they had hundreds of women, and they always remembered my name and would always come up, and even after I’d him they came and said, “Oh, let’s have a look at the baby.” You know, just that nice bit that was like, “We are interested.” Yeah, so I mean, really if they were used as a benchmark you can’t go far wrong.