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The importance of Patient Advocacy

An interview with one of the Focal Therapy Clinic's Patient Advocates, Eva Tomopoulou

Joining me today is Eva Tomopoulou, a patient advocate with the Focal Therapy Clinic. Eva is the first port of call for patients who approach the clinic, and she has engaged, guided and supported hundreds of men in their journeys to understand their prostate cancer diagnosis and ultimately to choose the optimal treatment for it. She’s here to talk about the role of patient advocacy and the benefits it brings to patients and their families.

The Focal Therapy Clinic is looking for new patient advocates. If this is of interest to you or someone you know, please get in touch: https://www.thefocaltherapyclinic.co.uk/patient-advocacy-a-critical-asset-for-men-on-the-prostate-cancer-journey/

Clare Delmar

Hello and welcome to on focus brought to you by the physical therapy clinic, where we engage you with issues facing men diagnosed with prostate cancer that are little known, less understood, often avoided or even ignored. Prostate cancer is the most commonly diagnosed cancer among men in the UK, and with this somber fact comes a multitude of challenges and opportunities. I’m Clare Delmar. As we move into 2022, I’m going to be diving deeper into some of the more challenging issues faced by both patients and clinicians, including technology, clinical adoption of innovations, inequalities and non-clinical aspects of prostate cancer. Joining me today is Eva Tomopoulou, a patient advocate with The Focal Therapy Clinic. Eva is the first port of call for patients who approach the clinic, and she has engaged, guided and supported hundreds of men in their journeys to understand their prostate cancer diagnosis and ultimately to choose the optimal treatment for it. She’s here to talk with me about the role of patient advocacy and the benefits it brings to patients and their families. Eva, welcome. Thank you so much for joining me today.

Eva Tomopoulou

Hi, Clare. Thank you so much for having me.

Clare Delmar

So let’s dive right in. It’s been a really interesting few months setting up the Patient Advocate program, and I think one of the things we’ll mention at the end is we are continually looking for more patient advocates and there’s been a very interesting recruitment drive and a lot of this you have led. But I’m interested in talking with you right now about what you actually see as the role of a patient advocate. How do you define patient advocacy?

Eva Tomopoulou

So the way I think about my role, the way I think about patient advocacy is that it’s all about active listening. And what I mean by that is that we’re there to listen to people’s experiences, particularly at The Focal Therapy Clinic the patients we usually get it will probably be the first time for them that they which have had a chance to have a lengthy conversation about their diagnosis. What were the treatment options that may have been given to them? So for a lot of them, they would be the first time someone would ask them questions about the diagnosis and try to help them make sense of it, which I think is really important. And another really crucial point of the patient advocate role is to really give this this people will come to us the sense that they’re not alone in this so that there’s other people that are going through this experience. There is support for them available and there is information for them available that can help them better understand either their options or their diagnosis.

Clare Delmar

So you mentioned about additional information. But you know what’s interesting about the patients at The Focal Therapy Clinic is they’re often coming for second opinions, so they already have a diagnosis. And so I guess I’m interested in observing that many of the men who come are pretty well informed. I think they’re pretty well informed. And and so I’m curious about how that level of information helps them or maybe even hinders them and how that plays into the fact that, as you say, not many people have actually listened to them before.

Eva Tomopoulou

Well, they are informed. I would say that’s quite a big topic, so they will have known what options are available to them. But it is very, very often that we see that patients have a very vague understanding of what their diagnosis means, and most of the time is not a very detailed understanding of what their diagnosis means. And we’re just talking here about the very, very basic information, like what does their biopsy, what what is their Gleason score, things that I did not do doing this job every day, I would expect people to be more aware of it or to have such, I guess a lot about. But it is very often that I find that patients are not really sure they have a vague idea of the staging. They definitely most of the times they would have heard about the treatment options that would be available to them. And those usually range from surgery, prostatectomy or radiotherapy and hormone therapy. And what I see is that most of the times they come out from this conversation is the understanding that their life will never really be the same after having treatment.

Clare Delmar

So you think that that’s a big motivator? So I guess when I ask about how much information they have, they have enough to know that they would like to inquire more about focal therapy and learn about other ways to approach their treatment.

Eva Tomopoulou

Yes, that’s that’s usually the starting point. The patients we usually speak to, all the people who listen to their options given to them by their consultants, and they just don’t feel certain that this is the right choice and they start looking for what else is out there. And I hope that there must be something out there that this can’t be just what is available to them. At this point, they start finding out about focal therapy, HIFU, and this is at that stage they would get in touch with us and we would start informing them, starting from the question that is usually what I hear most of the time is why? Why haven’t I heard about? Why has no one mentioned it? And yeah, that that’s usually the starting point, and it’s a very fair question, one that I find quite more complicated to answer the more I do this job, to be honest with you, because I also don’t understand why they haven’t heard about this.

Clare Delmar

Well, it’s not. It’s kind of like it takes two to tango when it comes to information, doesn’t it? I mean, it’s not so much that the onus is on them for not not having heard about it, but if you are and other people offering them this information. But that’s a different question. It leads me to ask you something else aside from information and maybe some asymmetry of information. What are the other, you know, more typical challenges that you hear from the patients that come to you? What other challenges do you think that men who are faced with a recent prostate cancer diagnosis are experiencing?

Eva Tomopoulou

A lot of the patients that we speak to at that stage, they’re quite overwhelmed with the diagnosis. It’s usually it would have happened, usually fairly recently. So that is a big part of the role of the patient advocate is to try to navigate that and to just kind of take it back to trying to be as informative as possible and reassuring that there are treatments out there; that this is a journey that a lot of people go through. We spoke recently about decision regret in one of the latest blogs that you did for The Focus Therapy Clinic, and this is something that I find quite crucial that a patient who’s informed and who is very well aware of their options and what would they mean for the quality of life as a patient who can make decisions that then they would feel much more comfortable with? And I think this is a really, again a really big part of the relationship we have with the patients.

Clare Delmar

So tell me some good news about patient advocacy. You know, tell me some interesting stories about men who you feel have particularly benefited from, you know, advocating for them.

Eva Tomopoulou

Going back to what we discussed in the beginning about our efforts to recruit a new patient advocates. It’s been really amazing to see that patients who have gone through The Focal Therapy Clinic we’ve spoken to are now active advocates in the field in different capacities, and they’ve been really inspired by their journey and their experience. And I think it’s just, like, invaluable that the role of the patient advocate seems to be such a crucial part of the journey that prostate cancer patients go through. And it’s really helpful and it’s really meaningful, and it’s always going to be an integral part of this of this process.

Clare Delmar

And it’s lovely to hear that people who benefited from advocacy from people like you or some of your other colleagues now want to become advocates themselves. And that’s kind of the ultimate sort of validation that they’ve experienced something good and they now want to share it with others.

Eva Tomopoulou

I’ve really been amazed by this, and it’s really I mean, it’s a great validation for all the work we do to see that, to be honest with you.

Clare Delmar

So can you tell us a little bit about what you’re looking for in terms of other people coming on board to join the patient advocacy team? Is there any particular thing you want to shout out before we close?

Eva Tomopoulou

Yeah. I mean, we were looking for people who may have had experience with prostate cancer themselves or in their immediate or, you know, some kind of other first hand experience. And who can really speak for that journey, starting from the diagnosis and not knowing what to do and how to move forth to go through treatment. And how did they felt? How are they now? You would be excellent to hear from as many people as possible who have things to contribute in other people’s journeys, who feel they would like to support other people and other patients going through this.

Clare Delmar

Or their families, presumably.

Eva Tomopoulou

Or their families, exactly

Clare Delmar

Wonderful. Will Eva, thank you so much for joining me today, and good luck with the recruitment program and doing wonderful work. Thank you.

Eva Tomopoulou

Thanks, Clare. Thank you.

Clare Delmar

A transcript of this interview and links to our patient advocacy program are available in the program notes at our website, along with further information on diagnostics and treatment for prostate cancer, as well as additional interviews and stories about living with prostate cancer. Please visit www.thefocaltherapyclinic.co.uk and follow us on Twitter and Facebook at The Focal Therapy Clinic. Thanks for listening and from me, Claire Delmar. See you next time.

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