Ellen

Ellen has been a stroke research nurse for 11 years. Starting the post involved a lot of adjustment and Ellen struggled with not feeling like a proper nurse. Once she had settled in, she found the job very rewarding despite the challenges.

Ellen has been a research nurse working on stroke studies for 11 years. Before this, she was a ward nurse. She applied for a research nurse post (technically advertised as a clinical trials officer’) because her ward was closing down. She had young children at the time and was drawn to the part-time, sociable hours which would mean no longer working nights, weekends or bank holidays. Since Ellen has settled in, she has found the job very enjoyable and rewarding. The main activities Ellen’s post involves are: identifying and approaching suitable patients, taking consent (if allowed in the study), arranging data collection, and inputting data. Over time, Ellen has taken on new studies, including one about rehabilitation which branched me out into the community and home visits. Ellen has found that the research nurse role has involved a big reduction in patient contact compared to being a ward nurse. However, she finds there is still a lot of scope to support patients clinically. This includes flagging medication issues and being a direct line to the hospital, because we have the ear of the consultants.

Becoming a research nurse and working with stroke patients took some adjustment for Ellen. It was also a new role at the stroke unit because previous studies had been run through ward staff. In her first few weeks in post, Ellen worked through outstanding data queries and organised the paperwork. She had a mentor from the Stroke Research Network who gave her an induction pack and sent her on training. Ellen also had support from the Principal Investigator (PI) on the studies and developed good relationships with the study centres. She recalled how the first monitoring visit was almost a training session for me really. A challenge for Ellen concerned her identity as a nurse and her inclination to do’ nursing: it was hard to resist nursing people [‚] and to stand back from that. Distancing herself from the day-day care of patients became easier with time, but also resulted in Ellen feeling she had gradually become deskilled, because they change the machines and they change all the policies. Ellen struggled with feeling that she was not being a nurse any more. At first, she didn’t find much satisfaction in the work she was doing but then the bigger picture clicked into place in terms of where we [research staff] all fitted in and I thought oh yeah, it’s a big-, I’m a tiny little cog in a massive machine [for improving patient care]’.

Ellen speaks about challenges in her role. This includes difficulties arranging appointments (including with radiology as stroke studies often involve brain scans): it’s just learning about the hospital departments [‚] a lot of juggling. At times, she feels there is pressure to recruit patients. She feels it is important research nurses advocate for patients; whilst it is good that some PIs are keen, they just don’t always get the little grey areas. Ellen finds that talking to clinical staff can help gage whether a patient is likely to be receptive to hearing about a study and can flag cognition issues that might be a barrier. Ellen finds that patients and their families often have questions more broadly about their health condition, not just about the study. Ellen also thinks that study sponsors/centres are not always very good at passing on findings to research staff, clinical staff or to patients, and this is a source of frustration.

Owing to practical arrangements around responsibility for the Stroke Research Network that originally employed Ellen, her contract is with a different Trust to the one she actually works in. There are some complications as a result of this, for example, about where mandatory training takes place or the practicalities of demonstrating certificates to avoid duplicating training. Ellen’s contract was initially fixed-term but became permanent after a few years. Her previous experience of having her ward close down meant she felt relatively okay about taking a fixed-term post as she was sceptical about the meaning of permanent’ jobs.

Ellen’s key message to new research nurses is don’t be afraid to ask for help from study centres or line managers. She also encourages research nurses to build good relationships with clinical staff. She has always tried to remember how busy it was as a ward nurse and that research activities are not the priority for these staff. Ellen is due to start a new post in a clinical trials unit at another hospital soon. The role will involve managing and leading a group of research nurses. Although she is unsure about leaving the specialty of stroke research behind, she felt it was time for a change and an opportunity to pass on her knowledge and experience.

Ellen advised new research nurses to ask for help if they needed it. In her experience, study centres have been more approachable than someone might expect.

Age at interview 50

Gender Female

So if I’m speaking to them about the day-day role, I would say – don’t be afraid to ask for help. From the study centre, probably. And from your line manager, but from the study centre. Because I think maybe you think that they’re not very approachable. They’re probably scared to reveal to the study centre that they don’t know something.

But actually they’re very, in the main, they’re extremely helpful. Particularly if you say you’re new. And ask for help from anyone around you.

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Ellen found that good relationships with the staff who book appointments was important. Making arrangements for the study was often a case of juggling and getting to know where there was flexibility.

Age at interview 50

Gender Female

We’ve built up a relationship with the staff. Mainly the appointment staff [laughs]. Who basically, they’re the ones that make the appointments.

And then what we try and do to accommodate the patients for this particular scan-, they have to have an MRI scan, a Doppler scan, of this is neck arteries. An MRI scan, a Doppler scan, a consultant appointment, and see us. So it’s trying to get all those four appointments-. Well, we’re flexible really. The other three appointments on one day and in really in half a day. Because you don’t want one at nine and one at five. So it’s deciding which of those three appointments is the least accommodating, [laugh] or least hard to get, and which is the-. So we usually get the MRI first, and then book the consultant, and the Doppler’s always very accommodating.

It’s just learning about the hospital departments isn’t it and what’s the easiest way to do it. It’s a lot of juggling

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Ellen took a research nurse job when the ward she was working on closed down. The experience shaped her views on the meaning of a permanent’ job.

Age at interview 50

Gender Female

So I was on permanent contract with my Trust that I work at. So when I left to work for the other Trust, I was giving up a permanent position. And I did think about that. But all I thought was ‘as a qualified nurse, I’m going to find work somewhere in the NHS. And I think because my ward had been closed down, I thought ‘well, nothing’s permanent’ [laughs]. It felt a bit mmm, well, you know. I really felt if they could shut that ward that we thought was really important, with highly skilled people, then that could be anywhere. So I thought right. That probably affected my decision actually, when I think about it. If I hadn’t had that experience, I might have hesitated more.

And I met- when I was brand new, I met two cardiology research nurses, not from where I worked, who were working in another speciality. And I said, Oh, why? and they said their funding ran out for cardiology. Then next time I saw them, they said they got the funding back [laugh] and they’d gone back to cardiology. But anyway, that made me think ‘oh, there’s probably jobs going somewhere, you know, in research. Or, as I said, as a qualified nurse.

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Ellen’s new job would be a move away from the clinical areas she was familiar with. She hoped to channel her experiences as a research nurse into being a manager.

Age at interview 50

Gender Female

So I’ve been offered a Band 7 team lead at the other hospital, the one with all the staff in the big offices [laughs], so that’s to manage a team of Band 6 research nurses in clinical trial offices.

So I should still be doing some of what I do now. I’m going to keep my stroke patients that are in follow-up and do that as part of that clinical thing. Because you build up a relationship with them. And so, and then- but stroke actually isn’t-, is only at the centre I’m at now, it’s not at the centre I’m going to.

So I will be involved in other specialities. A lot of overseeing. And a lot of supporting staff with study set-up. And managing staff really, which I haven’t done before, and all the annual leave and sickness and all that stuff that my line manager now does. Appraisals. And I have to do the nursey bits because the other Band 7 isn’t a nurse by background. So I have to do all the revalidation thing.

It’ll be interesting. And I’ll be taking part in a lot of the more managing, management meetings. Which we’re not privy to at the minute, so. Well I’ve already been to one. So it’s interesting. It’s interesting to see where- well, the pressures they’re under [laughs]. And that’s why the work filters down to my level.

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Ellen opted to wear a uniform when she was first in a research delivery post, in part because she was struggling with not being a nurse any more. Over time, the uniform situation for research staff at her hospital has changed.

Age at interview 50

Gender Female

So, when I started, I was told it was a non-uniform job. But I could wear a uniform though if I wanted. So, I- because I was struggling with not being [laugh] a nurse any more, I did wear my nurse’s uniform for a very short while. But obviously became mistaken for a ward nurse, the whole time. So I went into non-uniform pretty quickly. And then that went on for several years. Probably- yeah, about five years. And then they put all the research nurses into ward sister uniforms. And that was nice. And it was nice to be-, I like to be in a uniform, that is my preference. And then after another sort of two or three years, they changed us because we were being mistaken for ward nurses and asked management type questions all the time, into specialist nurse uniforms. Which- and I think they decided we were specialists in research. So that’s what we wear now. We don’t get asked questions because it’s a specialist nurse uniform – we could be anything. You know, there are lots of different specialist nurses. But the CTOs, the clinical trials officers, aren’t allowed to wear a uniform because they’re not a nurse. And they- that’s difficult. They want to wear a uniform and I can see why. And they’re going out and doing exactly the same job as me. And it’s just as clinical. So personally, I think it would be nice if we all had the same uniform and it was just for the Research and Development Department. For when you go into a clinical area. But that’s your answer. At the minute, research nurses – yes, they wear a uniform. But the clinical trials officers don’t.

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Ellen couldn’t take consent from patients in all of the studies she worked on. Even so, she sometimes had a role informally translating the information in simpler terms after doctors had explained the study.

Age at interview 50

Gender Female

The emergency one, that was always them [doctors taking consent from patients]. I was, you know, it was too much of , it was a CTIMP [Clinical Trial of an Investigational Medicinal Product] and, you know, quite an important one – you could kill somebody with it. So that was always them, I was just there helping. So for that one, I would be doing-, you know, what it’s like, the doctor explains to the patient and then they go away and the patient says, What do they mean?

So I’d be doing that bit, which I was used to [laughs] as a nurse. Doing a simple explanation. And paperwork. And that sort of thing. And I also helped administer the drug. Because I’d come from an area-, you worked in chemotherapy and I was used to working with drugs, and. And things like that. And the ward staff actually, it was quite new, thrombolysis, then. And the ward staff were quite- a lot of them were quite under-confident about it, so I brought my previous nursing skills to that. I was more confident in a way.

And then the other trial, the one that was acute but not emergency, you could- that was a CTIMP [Clinical Trial of an Investigation Medicinal Product] but they allowed nurse consent. So for that one then, yeah. Within a few weeks I was probably recruiting. And the other one was just to do with a medical device, but not a drug.

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Ellen described various forms of data from studies and how she managed them.

Age at interview 50

Gender Female

They’re nearly always inputted electronically onto a secure website. Samples are often frozen and you have to arrange collection by courier. By, in bulk. It’s not per sample. I know some trials do, but ours- ours haven’t. Scans? That’s a- radiology’s a big [laughs], a big issue with stroke. Because obviously they nearly always want the brain scans. And then they want MRI. Often they want MRI brain scans because they give them more information. But they are- we don’t do them routinely. Radiology are always so busy. Anyway. So they’ve done them. So, sometimes we upload them electronically. Then they have to be anonymised and it’s all very complicated. Apparently. Yeah, we used to fax a lot but we’re not allowed now. So we scan and email, and anonymise. So yeah, you’re kind of, you’re kind of doing your work twice with the paperwork. Because you collect the data on paper and then you input the data [laugh] electronically.

One or two trials have said you only need to- they don’t really- some- they vary. Some say keep the paper, some say just-, it’s an electronic trial, just do it all electronically. But that doesn’t work, to my mind, with an MHRA inspection in the future, when the electronic data’s not accessible [laugh]. So, we just keep the paper.

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Ellen described the extra support that research participants sometimes had which was not strictly study related.

Age at interview 50

Gender Female

You’re, you’re the- if they weren’t on this research study, they wouldn’t be having-, a lot of them, if they didn’t come on the research study, they wouldn’t be having this contact with the hospital. And they’ve got our direct number, so they’ve really got a direct line to the hospital, because we have the ear of the consultant. So they phone us with a problem, which is nothing to do with the research [laugh] or- well, usually it’s something to do with stroke. And we go and speak to the consultants and get back to them. So it’s quite valuable. Well it’s very valuable, I would say.

So, I get satisfaction from that, that we’re providing them with a good service. I was going to say a holistic service. It isn’t really, is it. But we do cover lots of different aspects. Because they’ll get into-, because it’s stroke, and we’re trying to prevent another one so they’ll get into weight loss and oh, depression and anxiety and, you know, mindful-, all sorts of different things that we could maybe recommend and find out about for them. Local groups they can go to and that sort of thing.

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Ellen said that sometimes the clinical staff will not be known to research NMAHPs and she emphasised the importance of how we ask for assistance.

Age at interview 50

Gender Female

There are, there are sometimes occasions where you have to go to other wards and ask them. And we don’t know their staff. Sometimes we start to get to know them as you go there regularly. So I would say that is more about how we ask. Yeah. And how we- we make it as easy for them as possible. So we’ll say-, it’s an ECG [Electrocardiogram] and a blood test that we need for this, for example. So we’ll say, Do you have an ECG request book? Does someone come round every day and do ECGs? When-? Most of the wards will have a blood request box, which the doctor will pick up every morning. You know, it’s just, What’s the easiest way? So that you actually don’t have to, as a member of, as a ward nurse, go and take that patient’s blood and do an ECG, because we can probably tie it in with when the ward ECGs are getting done anyway [laugh]. Or something like that. So yeah, it is just, it’s definitely how you ask. Because some-, I have heard of cases where someone, a research nurse or CTO [Clinical Trials Officer], might go in with a different attitude and sort of say, This needs doing for the research, you know what I mean, and then, and then people get resistant.

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Ellen realised how her role fitted into the bigger scheme of patient benefit when she attended a conference early on in her research post.

Age at interview 50

Gender Female

And it took me going to a conference, a national conference, quite early on, when the bigger picture clicked into place really. There were big presentations and things, and pictures of maps and [laugh] where we all fitted in. And I thought ‘oh yeah, it’s a big-, I’m a tiny little cog in a massive machine. But you need all those little tiny cogs. And then you, as you obviously know, you’re changing- changing patient care and changing practice. And if it wasn’t for research, all the little things I’d been doing as a ward nurse, I wouldn’t have been doing [laughs], because we wouldn’t know about them.

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When she first started in a research post, Ellen found it hard to resist nursing people. Eventually, she stopped when her time and abilities to do this got less and less.

Age at interview 50

Gender Female

It’s difficult to help with nursing someone when you’re not- you’re not a nurse on the ward, so you haven’t had a handover for that patient. So you can actually do more harm than good, because you don’t know the full story, the full picture. And also, you gradually become deskilled, because they change the machines and they change all the policies, and. Little things like that. Like checking a blood sugar, you needed a log-in for the machine and you didn’t used to need all that. So it became less and less feasible for me to do any nursing. And I became more- more and more busy. It wasn’t as busy at first with the research. I was sort of finding jobs for myself. Which is amazing, now [laughs]. Cos I’m very busy with it. But it became more and more busy with the research, so.

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