Thriving not surviving

What happens beyond cancer? Louisa Fleure, from London’s famous Guy’s Hospital, works with cancer survivors to address lingering issues and concerns, while also navigating the different anxieties faced by medical and nursing staff experiencing burnout.

Can you explain what that entails?
Clinically my role is to look after men from diagnosis through to end of life with metastatic prostate cancer. I usually meet men when they’re diagnosed. I’m involved in their treatment initiation and I run a number of nurse led clinics. So I look after men on hormone therapy and I also do some clinics following up men with castration resistant prostate cancer as well.
In the UK nurses can practise fairly autonomously, so I can prescribe, I can refer for imaging etc. Then my big passion is probably more the survivorship stuff. We do lots of events, seminars and forums, where we get men together for support, education and information.

What is cancer survivorship and is there a specific prostate cancer survivorship that is very different?
Cancer survivorship, or living with and beyond cancer, is an initiative to respond to needs of people that have had or are living with cancer.

It’s based on some research that showed that people with cancer felt that they still had some residual unmet needs after treatment and also a lot of people felt quite abandoned by their medical professionals once they were discharged. So it’s really a very person focused approach, where we initiate assessments along the way, holistic needs assessments, and then we also provide health and well-being events where we can attend to some of those unmet needs.

How did you find yourself in that area?
If I’m honest, in the UK it’s pretty much a must-do. We were basically given it as a target. All of our patients were going to be getting holistic needs assessment within 31 days of their diagnosis. And we would initiate a care plan from that where we were instigating nursing interventions and referrals to other professionals to help them with their unmet needs, and also that we would ensure that every man had access to health and well-being events.

So it was a big ask. It didn’t come without pain, but five years on and we’ve got a pretty good program now for our prostate cancer patients.

Is your model shared with Australia or do you think the UK is leading the way?
From people that I’ve talked to in the community here, I think Australia and the UK have got lots of similar themes in terms of survivorship. The feedback that I’ve got is that it’s quite patchy, so in some areas survivorship hasn’t really taken off yet and in others they are ploughing ahead.

I think it’s probably similar to the UK, it depends where you are and how far ahead you are with it.

When it comes to male survivorship and female survivorship, is there a divide?
That’s a really good question. I don’t know because I only deal with men.

In my hospital we have a central survivorship team, who have endeavoured to set up some cross-tumour site events, which haven’t been particularly well attended.

I certainly know with my patients, they’re very protective about their community and they have fed back over and over again that they like to be with other men with prostate cancer. We’ve tried to set up joint things and it’s not been very well-received.

That may just be our patients, and it may be something that we can work on for the future, but it’s not something we’ve been very successful with so far.

Do you feel it’s more of a need from the patient rather than what’s on offer that may be lacking?
Yes, I think so. Our survivorship program was set up based on a lot of things. We did some scoping work, looking at what the unmet needs were through questionnaires. We ran a number of focus groups and tried to get a really good representation of our patients, so we did a focus group specifically for black and African Caribbean men, because we’ve got a huge African Caribbean population where I work.
We did staff, we did patients, and we said to them, ‘What do you think would work?’ What came back over and over again was that they wanted groups where they could meet other men and other partners, and other family members with prostate cancer.

They felt really strongly that they had specific needs. There’s a real feeling in my patients that they’re special and they’ve got those particular unmet needs.

A lot of it is around sex, is around [lower urinary tract] symptoms, is around masculinity, and is around how they feel as people.

I think there’s a real safety for them at the moment in doing that in a prostate group.

Can you talk about workload? Is burnout a problem for nurses in your area?
I think it is. In the UK we’re facing various challenges with our nursing workforce. We’re in a position where more nurses are leaving than are joining the profession. Certainly in big metropolitan areas like London, it’s said that about one in 10 nursing vacancies are empty. So we’ve got a problem and that obviously comes through to us. I think as our roles develop as well, we find ourselves taking on more and more things. Often because it’s good for the patient, often it’s because it’s good for us professionally. But what we’re often finding is we’re in a position where we take on new things, but we’re still doing the old things as well. My mantra is always, who is doing what you used to do? If it’s still you, then there’s probably a bit of a problem.

I think it’s also inherent in nursing, you come into nursing because you want to help, it’s a caring profession. Things like compassion are absolutely essential to be a good nurse.

But all those things are also the things that keep you saying ‘yes’ to things and stop you saying ‘no’. So I think we’ve got a real issue where the clinical nurse specialist role is almost without boundaries.

It can expand and it can expand and if nothing is stopping it then eventually you find yourself in a position where you’ve got too much to do and I think that’s an absolute highway to burnout.

Do you think that’s a global issue just in the UK?
I think inevitably it’s a global issue. Certainly when I was doing some research, it seemed to be that every country I looked at, nursing shortages seemed to be fairly high on the agenda and I think it’s inevitable in our profession that we’re going to be particularly likely to experience that just because of the nature of our jobs.

What can you see that may improve that?
I think it’s got to come from us. I think waiting for somebody else to solve our problems probably isn’t going to work, it hasn’t done so far.

[This means] being very vocal, having the data about workloads. I job plan all my team. I look after 12 specialist nurses.

As part of my job planning I actually worked out how many hours it would take to do all of the things in their job plan and when there is a mismatch I highlighted that to my bosses and said, ‘I can show you that there’s not enough hours in the working week to do this, so what are we going to do?’ Looking at flexible work forces and having more admin support, having support workers, looking at what needs to be done and thinking, ‘Well, who is the right person to be doing this? Is it a specialist nurse or actually would an admin assistant be better?’

It’s a way forward. I think if you’ve got a workforce that are supported so that they can do their job and not everybody else’s, then you are in a better position.

We also did some work last year on resilience training. I’m ambivalent about that because I think you can go on forever and then it becomes your problem because you’re not resilient enough, when actually sometimes it’s, yes I’m resilient enough, it’s just I’ve got too much going on.

That must have a flow-on effect for the patient in cancer patient survivorship.
Absolutely, yes. I think it’s the old adage on airlines – that you have to put your own mask on first before you put anyone else’s on. You have to look after yourself because you can’t look after other people if you’re broken.

I think as a manager as well as a clinician, my role is often to say to people, ‘No, you’ve got to stop, go home, take some time off, you’ve had a bereavement. Don’t come back to work, you’re not safe to work.’ Sometimes you need to be that person that looks after your staff and steps in and says, ‘No, you’ve done enough.’

What is the effect that you may see in cancer survivors?
I think if your nurse is burnt out, you get compassion fatigue. Sometimes to protect yourself you can’t then take on other people’s problems. What a cancer survivor will see is a nurse that’s short, that’s snappy, that doesn’t have time, that can’t just sit and be with someone.

A lot of what we do is being. As I’ve got more experience I talk less and listen more. To sit and just sit with somebody and be with them and let them have that time to express themselves will disappear if what you’re doing is you’re looking at your watch and worrying because you’ve got 10 other people to see. That will definitely affect cancer survivors, because they need that, they need somebody that can just be with them and have the time and space to let them tell them what’s going on.

Are there resources that you point your nurses to, to get information or support or is there some sort of safety net so that some nurses don’t burn out?
I would advise all my nurses to have a mentor, somebody outside the organisation that they can bounce ideas off and to check in with and get a reality check.

I’ve got one; I would definitely recommend everyone did. We have a measure in the UK: nurses working with cancer should have clinical supervision. So every month they’ll be with a psychologist and they can talk through and debrief any challenging situations, which is really helpful.

I think your team is probably your biggest help. I’m really fortunate, I’ve got a fantastic team. We’ve got an amazing office. It’s our safe space, we can come in and we can offload and you can say what you need to say.

If anyone is having a hard time you can guarantee one of the team will step up and say, ‘You sit down, I’ll make you a cup of tea.’

I think that kind of camaraderie and support, and a bit of official kind of structured supervision as well, is a great combination.

Louisa Fleure is the Lead Urology Clinical Nurse Specialist at Guy’s Hospital in London. She manages a team of 12 specialist nurses, who work in urology, cancer and benign conditions. She is also the advanced prostate cancer CNS.

Image credit: Vadim Guzha via 123RF

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