I do get involved in the feasibility stage. I get involved from the expression of interest stage. All the emails for paediatric research that is coming up, all the new, the new research comes to me. And then I’ll read it and if we don’t see that patient population and I know we don’t, I will reply, we will reply to it and say, We couldn’t consider it here. If it’s a population that I’m not sure whether we would definitely have that, because I don’t know everything, then I would forward it to the consultants. But if it’s, if it’s a study and I do think we could run it, I would roll it out and forward it to all the consultants in the Trust, not just the ones that are research active, to everybody, cos it maybe that one of the other consultants it’s their specialised area and they will be wanting, the ones that are interested in it.

And then I help with the expression of interest forms, we do them together, the consultants, myself and the R&D [Research & Development] department. And then when the feasibility we would all, once we-, and the sooner we can get hold of the protocols, the better. I don’t think they give us enough information at the expression of interest point for us to be able to make a, a decision about whether, or we would feasibly be able to run the studies.

And it may be at that point, you get the protocol and you think it’s not, I can’t-, there’s no way we can run this’, or we’ll, we will pick out areas where, of weaknesses within that, where we may not be able to, we might be able to say, Well actually we can do all this, this, this, this and this, but actually this part we, no we can’t provide that here, or, Are you going to provide it? or, or Actually we won’t be able to do that because we don’t have the out-hours pathology support to provide that, to be able to collect that sample at that point in time. And then we could negotiate, so there’s a, you can negotiate with the study team at that point.

I mean we have to phase them, so we would have to look at both the number of studies that the department can support at any one time, whether they’re the same pool of patients, and it may well be that you’re going yes well we, we can do this study, but we won’t be able to start recruiting until, you know, for six months, because we are currently recruiting for this study, and we can’t do both at once’, or, and that maybe cos there aren’t enough patients, or it may just be sheer resource, that it, and there is a limit to how many different protocols you can expect a clinical team to keep in their head, and to deliver and, and it is harder to treat patients to a clinical protocol as well, you know, so you don’t want to over burden the clinical team. So yeah, I think we have to be mindful of not over burdening the same group of people.

Well I just say, We’re doing this study, it’s going to be patients on this, in this area that we’re going to be looking at. The study is whatever it’s about this is what they’re looking for, this is what they think they might find, what do you think about that? Do you think we will find these patients here? What, how many, how do you think is the best way for me to come every morning and have a look, is the best way for you to give me a ring when you see, you know, when you see patients like that, how do you think we should play it? you know, and see what the feedback is. And then you’d get like you can judge then by the response you get, what input is gonna work the best.

I also do education for the unit, so every month for example there’s a study day where- so because of the size of our unit, so we have staff from Band 5’s up to a Band 7, on one day a month it’s like their sort of mandatory training update day. And we have a research slot on that every month, and so we give them an update on all the studies that we’re doing, any positive feedback, any areas where we’ve perhaps encountered any challenges, and also we give them the chance to ask us any questions about anything they’ve spotted. It’s also a chance for us to say if we’ve got any secondments, any posts coming up. If there were any conferences coming up and how they go about writing something up.

So we use that as our chance to kind of really engage with people from the unit once a month in a more sort of formal way, and that helps us to promote that research culture but also helps them to ask any questions. Cos I think it’s quite hard on a day-day basis, especially when families are there, for staff to turn around and go, Why are you doing this study? Like, Is this really necessary? But I think the important message that we give the unit is we know that research isn’t for everybody, but what we need them to do is just to support the activity and especially to support families if they’ve made the decision to take part in something.

I was, I was originally on the mentor register when I was on the wards. And research has only just started taking student nurses. At the moment from here. We’ve only had one student and they’re currently third year students. And we’re in the process of developing a training package for them because research is very, very intense. A lot of it can be quite boring and laborious, and it’s how we keep a student interested. So, I’ve been actively involved in setting up that, and we’re getting our second student coming, who’s going to be working with me, where initially my first student that I just had for three days on different times. I was more of a support mentor, this time I’m going to have them for two weeks so that we can actually be specific, and what we learnt from our last student in the feedback was that we’re not, we don’t need to be too broad. We need to be more specific. So, give them an overview of what’s going on and then say because they’re third year students, Is there a particular area that you’re looking at? Are you interested in breast? Are you in bladder? Is it lung that you’re more interested in? And then try and be, to, to guide them into one protocol, understanding one protocol. Because protocols are all the same, they just say different stuff. But you follow it and they’re all, they’re all the same at the end of the day.

So, getting them to understand about why we do the paperwork, what it involves, why we ask the questions we ask, why is that important? Knowing and trying to explain to them the different types of studies. Why it’s important that we look at toxicities when people are taking drugs. Why, the one that I’m going to be working on at the moment is my bladder cancer one, cos it’s a questionnaire one, and it’s looking at people’s experiences from diagnosis to treatment, and how that works. How people feel about the moment they’re told the bad news, to how long it took to get that bad news, and how that works.

So Clinical Trials Day is coming up and so, I’m pretty inventive. So for Clinical Trials Day which I’ll explain randomisation, so I don’t know if you remember the Wheel of Fortune?

Yes [laughs].

[Nods] So, I’ve actually -, what we’re going to do this year is use a Wheel of Fortune to explain generally. So and it’s going to have the Wheel, and patients will come over and they’ll turn it around and it’ll have like A, B, C, D, and then they’ll have four jars and have A, B, C, D with like I don’t know, sweets, chocolate, empty kind of thing just to explain. So you get-, you-, randomisation is actually random, so it’s an allocation that was not predicted by anyone. And then A would represent etc., but for the particular-, when I explain to them about the study I don’t use the Wheel of- randomisation; that’s just for clinical trials day, so having a bit of fun. I would explain to them that it’s done by a computer, so it’s not done by anybody in partic-, as a person, to reduce bias. And therefore, you going into the trial I can’t tell you what you’re going to be randomised to. And I just explain to them that it’s-, it’s not being based on any aspect of yourself kind of thing. I’ve had to put your details into create like a study number, but the random-, the actual randomisation bit is not specific to-, it was not created that-, so let’s say you get randomised to B, it was not created specifically, because, to B because of anything to do with you, if that makes sense?

Some people have been a bit hesitant on that though, cos they’ll be like ‘oh, computer’s gonna -, gonna destine what I’m going to be doing. And it’s-, we just have to explain that’s the safest way to do it cos if a human being was to do it they would be-, there would be some part of bias at least. And they’ve always got the option to withdraw if they don’t want to actually participate.

And I think, yeah just really spreading the word and working regionally, and being, being seen to do different things. We’ve done some charity work and we’ve raised some money for different charities and that particularly try to be involved with research, brain tumour research. We’ve had a bit of a high profile raising money for them. I think just the general social media thing has, you know, really gone out there. The staff bulletins, you know if we’ve got a study that a lot of staff can take part, it goes on the staff bulletin that everybody gets. We’ve had cake stalls in the reception that, you know, we have International Clinical Trials Day once a year that, you know, we try and put ourselves out there. [Regional event] that was a massive big publicity for us, which was great, you know, we had some banners and we had our own stand and it was we recruited really well to [regional health study] as well as screening for diabetes-, type II diabetes. So yeah, yeah, it’s, it’s really evolved over the last few years.

At the moment from a clinical research team perspective a lot of our research that we do is research delivery for portfolio studies, which are very medical, and there’s not much nurse-led research about at the moment. I think that’s something that will be of great benefit to our patients in the future, because yes, the medical innovations are, are fantastic, but we also need some nurse-led research for our professional growth to help the care of our patients and ensure that their experiences are as good as they can be.

So for example my day today has been a lot of work preparing work for conference submission, so very, we’re very careful to scrutinise all the work that goes in. So we’re very careful first of all to encourage our nursing and allied health staff on ITU to submit work for conferences, to share what we’re doing. Paediatric intensive care is quite a small community and especially in terms of units that have over ten patients, ten beds. And so actually we all need to learn from each other. And so we have a very strong approach on our unit to support people to put work in for conferences and to also write it up for publication. That side of it needs a bit more work, but the public-, the conference presentations we do really well at. And we have lots of really high-quality work and we make sure that when it’s written up it’s also conducted to a high standard. So a big part of my job is helping people to do that, so I spent four hours yesterday reviewing posters [laughs] but it’s a worthwhile investment because actually staff very quickly pick up those skills and then the next time they come to do a piece of work, actually it’s a lot easier. It’s a much better standard, so it’s takes less investment in the long run.

Yeah I haven’t, I haven’t got to that bit yet with any of the studies that I’ve been on, so, but I doubt it. I think there’s, there’s only one where I might potentially be required to say something, and I’d be very surprised, very happy, but very surprised if I was asked to contribute to the writing up of that. Also I think, you never really get mentioned do you, when the paper gets written up, you never get mentioned in the, in the writing up or you know there’s a whole tranche of people that work on that study that never get their name in lights, but I mean I kind of understand that from the other side now that I’m doing my own study, cos I think it’s my flipping name up there, not yours, get off.

Huh but it does seem like a shame really that you don’t, cos there’s a lot of work that goes into, to carrying out a study. But I guess it’s not part of our role to be, our role is to gather the most clean data that we can, and to keep it in as clean a way as we can so that when it comes to being analysed it can be analysed properly. That’s our role, I would say in it, you know my work life role is all about gathering good data and knowing, knowing what good data looks like and what bad data looks like. And, and being true, true to that really. That, that’s my role. So, I, a part of write up probably not, I’d be surprised. But I think we’re there in the fine detail because we will have gathered good data and if we haven’t gathered good data then the write-ups not going to be good, and it’s got to be true. So it’s important really.

Well at the moment the studies that, that the two, two of the studies are from a different university, so not really. Your data goes onto the online database and then gets fed back to the main site. So not with that one. With the main, one, the main microbiome study is from our Trust. Again we’re not really in that phase. I mean clinical research fellows tend to have their own projects going on, but not really, there’s not a lot of writing up involved. There is, there are small opportunities, so there’s an opportunity for some data analysis for a scanning machine that we’re using, it has a new type of technology, that’s needing to be analysed and it hasn’t yet. So, I’m hopefully going to try and take that up at some point in the future just because nobody else is. But there’s no real routine inclusion in that, which I think is a shame, I would like to be involved in, in the end, the endings, the more, more fully rounded picture of the of the study because you can be involved, you’re definitely involved in the initiation of the study, and then you run it, and then it finishes and then all the data goes out to, to whoever, and then suddenly a paper appears and there’s no mention of what you’ve done.

The actual practical tasks of the role can be sort of, maybe not a surprise, but there’s a lot of practical skills, so lab skills, becoming trained in basic processing of samples and centrifuges. And sometimes that’s a surprise because perhaps at the outset of becoming a research midwife, you’re actually thinking what all the -, burning ideas that you’ve been harbouring and wanting to get on to. So, there is a little bit of a dance and a readjustment I think, and I won’t say that it’s -, I won’t say that it’s disappointment, but it’s a regrouping of how perhaps I, or other people I can see, think of being of research midwife, cos sometimes it’s a little bit removed from the ideas. But it also affords you many, many, many opportunities and perhap -, like for example, working in a clinical research team that’s doing interesting things round early pregnancy or early embryology; it affords you a huge, rich window into that particular speciality.

That wouldn’t have been there had you continued in a -, a sort of clinic -, purely clinical role.

So, so, it’s interesting because it’s very task based.

And the practical side of things, and also it’s a bit like being in project management because understanding the process of how somebody in your team, or somewhere else, got an idea and how you actually -, how you actually get something out of the idea a question, a research question; how does that happen? And I actually kind of enjoy that sort of process thing. It maybe is the micro-manager in me; I like thinking about how it will run on the shop floor.

But sometimes I think that’s the difference between a well planned and well executed study or not; one that’s actually thought about ‘Well, how’s this going to sit in the setting? How’s that going to work with the antenatal clinic midwives who aren’t directly involved in the project?’ And I think you have to have a real sort of business almost mind for that.

I don’t mind doing other people’s work; I don’t mind that at all.

And I’m much more -. I think my personality type, I’m not a -, I’m not one of these what do you call them, these creator inventor type of people. I’m much better at you give me a job to do-, you give me a study to run and I’ll make it work’, whereas if you said to me, “Go and write a study,” I’m a bit like ooh, I don’t know what to do. But I sort of wonder whether it would be nice to push myself in that direction a bit. I sort of feel that I’m not the ideas person, but I do have a couple of ideas that might work maybe.