Melanie

Age at interview: 43

Brief Outline:

Melanie is a lead research nurse in dermatology. When she started in her first research nurse post seven years ago, it was “both exciting and a bit tricky”. She had to do a lot of “learning on the job and teaching myself” about the job.

Background:

Melanie is a research nurse. She is married and has children. Her ethnic background is White British.

More about me...

Melanie is a lead research nurse working in dermatology. She has been in post for seven years, and now has line management responsibilities for a research nurse team. Before she worked in research, Melanie was a nurse in a number of different settings; for example, she was a blood transfusion liaison nurse in the National Blood Service for six years. She then took some time out to have children. Her nursing registration was due to be renewed but she was unsure whether returning to nursing would be suitable with a young family, so “decided that I would just have a look and see what was out there”. Melanie came across a six month research nurse post – the fixed term contract was an “appealing” opportunity to try the role out and would give sufficient hours to renew her nursing registration. She enjoyed the job and the funding for the job continued to roll-on. After four years, Melanie gained a permanent contract through her Trust who annually receives renewed funding from the Clinical Research Network. Melanie is not overly concerned about the funding ceasing for her post or the research nurse team, because “we’ve always recruited to target […] I pride us on doing what we say we’re going to do and doing a good job. However, the risk is always there and the wait for confirmation of funding is always a bit tense”.

Starting in the research post was “both exciting and a bit tricky” for Melanie. The previous post-holder had left before Melanie had started, and both research and dermatology were new areas for her. She recalls that “the first couple of years was a bit sort of cobbling it all together and learning on the job and teaching myself and trying to grab as many learning opportunities that I could”. Melanie thinks it is good that there is now much more training for nurses new to research posts, as she feels there were aspects that should have been explained to her right from the beginning: “nobody had taught me about research, nobody had taught me what the different phases were of a study, or how you put a protocol together, or what should be in a site file”. 

Melanie has worked on observational and interventional studies, including phase II and III clinical trials, with a mixture of paediatric and adult participants. The activities involved include recruiting patients from clinics, consenting participants (“if it’s not a drug study”) and collecting data (including taking blood samples). Some studies are “simple” and involve a quick appointment with each participant, others require frequent follow-up over many months. When approaching patients about studies, Melanie thinks it’s important to convey the impact that participation might have on their lives – for example, if they need to come back for additional appointments. In her current role, Melanie is also involved in checking the feasibility for potential new studies and closing down studies.

Melanie talks about whether or not it is really necessary for someone doing a research delivery role to be a nurse by background. She thinks that, ultimately, the experience of being a nurse does help because it gives “lots of skills” and values which become “intrinsic […] that I don’t really think about anymore, they’re just a natural part of who I am”. In the course of carrying out research activities, she thinks the role of being a nurse in supporting patients often comes to the fore – whether that’s helping explain what the consultant has said or being someone to listen and “really talk through” any concerns the patient has. In Melanie’s experience, this support often goes beyond the research remit and having the time to explore these concerns is “quite a luxury in the current NHS”.

Melanie isn’t sure about her plans for the future. She’s happy in her current role and has no plans to leave. A previous study funded Melanie to undertake a Master’s module and she would like to do another in the future. She plans to take any “opportunities of training and/or education that come along”, but adds that these will have to be balanced with her busy family life. Melanie feels she is good at implementing research studies and that she is not a “creator inventor type”; however, she does have a few ideas for research and thinks it would be nice to “push myself in that direction [of independent research] a bit”.

Melanie’s key message to nurses thinking about moving to research is that “it is a real privilege to be able to work closely with people” to shape future health care. She likes that study participants can gain from the experience too and that, in her experience as a research nurse, there’s more time to offer this support. She encourages clinical nurses and student nurses to shadow their research colleagues, and hopes that doing so will challenge negative notions people might hold about the role. Melanie thinks it is important that her research department is integrated well into the dermatology department as a whole – “if the clinical nurses are really busy, we can help them out […] and vice versa”, which she thinks ultimately makes a better experience for patients.

Melanie thought it was important to clearly explain expectations and any extra commitments involved in study participation.

And I always try and make sure that they understand the impact on their lives. So, often people might be quite interested, especially if it's a new drug that they think might have a wonderful effect, and they're very keen to be part of the study. I do just try and make sure that, OK yes, it might, but you're also going to have to come for 20 appointments, and you might be here all day on some days, and sometimes it's really boring and, you know, we try and make it as pleasant for people as we can, but you know, the nature of the work that we do there's a bit of hanging about and waiting for pharmacy.
 
So, I just try and tell people that upfront cos I don’t like -, I wouldn’t -, I wouldn’t want to be part way through a study and, you know, have a nasty surprise, or think, 'Oh well, you know, I can't do this anymore,' or 'I'm too busy or work's too much,' or whatever, and we do try to be really flexible and accommodating and, you know, have an appointment when, when people can come in, cos I appreciate people work and they’ve got families and all the rest of it. So, I guess it's just trying to be as honest and upfront with people as early as possible.
 
And then they’ll have a conversation with the consultant as well as us, and yeh, we can go back and forwards as many times as they want really till they're happy to take part, or not, whichever.

Melanie described there being a different approach to Adverse Events (AEs) in an observational study compared to an interventional study involving dermatology patients.

It depends what the study is I should say. So, we've got an observational study where we're following patients up who are on particular systemic drugs for their psoriasis, and an adverse event is reported to us in-. So, we follow them up and we want to know what's happened to them in the previous six months, so an adverse event can be any time in that previous six months. So, those aren't necessarily urgent because they’ve been dealt with by the appropriate medical team at the time, and we're just capturing that data, and that’s captured on a paper CRF [Case Report Form] and then uploaded onto the database. And depending on what it is, depends on how much information we will try and capture. If it was hospitalisation they’ll want to know how many nights and IV [intravenous] antibiotics, and all that sort of thing. So, we try and capture all that information. Adverse events for drug studies, I'm sure you know need to be reported much more expediently. So, we've had the odd -, fortunately, we haven’t had anything awful where patients have been really poorly, but we have had the odd few events that we've wanted to report quickly. And I guess it's just about -, it's knowing -, it's knowing who to report to before you need to do it, so I try and make sure that we all know whether it's a level one or a level two study, and do we just need to report to the sponsor or do we need to report to sponsor and to R&D as well.
 
And I've found that instead of trying to collect all the information before you let anybody know, it's better actually, as soon as you know when you’ve got a sketchy amount of information, just let the sponsor know and just let R&D [Research & Development] know, and at least they're aware. And then you’ve reported it within the 24 hours or whatever that particular study says, and then you can collect the rest of the data afterwards, still within whatever specified timeframe it happens to be.
 
But I think when you first look at those adverse event forms, or especially the SAE [Serious Adverse Events] forms, they're, you know, X amount of pages long, and you think 'how am I going to get all of this data right now?' But I think, I think there's an understanding that get what you can and then sort of work, work on the rest of it afterwards. Sometimes it does mean that you have to prioritise because if you’ve got to get that information over to them within 24 hours, and you do need to work with a consultant cos they’ve got to have input into whatever it happened to be and 'was it related to the drug?' and all of that sort of thing. So, there is some, some -, there are some times when you just need to sort of prioritise that over everything else. And that has happened but yeh, not too -, not too frequently, thankfully.

Although Melanie had thought about writing her own studies one day, she enjoyed her role as it was and felt it suited her.

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.

As a research nurse, Melanie found it rewarding “being part of something” that could have significant patient benefits.

I think it's a real privilege actually to have the time and the ability to work with people to improve their health, and I think it is about not necessarily being rushed from one-. We are -, sometimes we are; sometimes we are rushed from one thing to another and, you know, you don’t know whether you're on your head or your feet, but that’s normal for lots of people doing lots of things. But I think on those occasions like we were talking about earlier that you do have the time to sit with people and you do have time to make a difference.
 
And I think it's also a bit about being part of something that’s, that’s a bit new and a bit -, a bit unknown. I do particularly like -. I take lots of different things from lots of different studies, but I do quite like being part of the sort of the new drug studies, and there's a stud-, there's a drug that’s just received NICE [National Institute for Health and Care Excellence] approval-, well last year, got a NICE approval, and another one that will get NICE approval later on this year, and it's sort of nice to know that you're being part of making that -, you know, even if it's a tiny part, you know, we had a couple of patients on a study that was this big, but without lots of people with just a few patients it wouldn’t have worked, and I suppose it's quite rewarding being part of something like that.