Episode 151: Patient Advocacy: Could you get involved? | Hernia Talk Live

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Speaker 1 (00:00:10):

Hello everyone, it’s Dr. Towfigh. Welcome to Hernia Talk Live. I am your host, Dr. Shirin Towfigh, your hernia and laparoscopic surgery specialist. Thank you for those of you who are joining us live via Zoom and also Facebook Live. You can find me at Dr. Towfigh. As you know, I’m on Twitter and Instagram at Hernia doc. At the end of this show, all of the prior episodes, including this one, can be looked at watch shared on my YouTube channel at Hernia Doc. And as you may have heard, we are also now a podcast. So if you prefer the podcast type of interaction and just driving and listening on your phone or radio, you can follow. You can follow me and subscribe to my podcast, Hernia Talk Live. So very happy to have a guest today. She is one of my new friends. Jackie Bullock is a patient advocate. She’s based out of Manchester in the United Kingdom. I was very lucky to have met her last year. She is a definite, strong, active patient advocate. She runs the Hernia Patient Support group on Facebook. You can follow her on Instagram at SFSGRP two. It’s very difficult to do that one. I would just do it on Facebook. It’s much easier. That’s the Hernia Patient Support Group. So welcome Jackie. Hi.

Speaker 2 (00:01:38):

Hello. Thank you for having me. Nice to see you again.

Speaker 1 (00:01:41):

Almost a year ago. I personally met you. We’ve been interacting online, especially with Twitter for many years, but I got to put a name to a face and it’s been a fantastic relationship ever since. So thank you

Speaker 2 (00:01:56):

For that. Yes, it was lovely to actually meet you face to face and then again in Barcelona.

Speaker 1 (00:02:01):

Yes. And then to follow up in Barcelona, and I hope next you’re in Prague. Is that true?

Speaker 2 (00:02:04):

Absolutely, absolutely. Wonderful. I was in Prague last week and it’s a beautiful city.

Speaker 1 (00:02:10):

So Jackie is involved not only with her own work, but also as a patient advocate with the European Hernia Society. The meeting was last year in Manchester, this year in Barcelona and will be next year in Prague. And so as a representative of the patient population via the European Hernia Society, I get to see her at all of these meetings. Congrats.

Speaker 2 (00:02:39):

Thank you.

Speaker 1 (00:02:42):

What was very unique, and I did do a show after the Manchester, meaning I thought, by the way, it was one of the best European Hernia Society means.

Speaker 2 (00:02:50):

Yes. It was very good. We were there with the British Hernia Society on that.

Speaker 1 (00:02:53):

Yes. Well, because the president was British that year, so it was held in Manchester. Dr. Ali Sheen, who was a prior guest on our show as well, but he did a really, really good job. I think he

Speaker 2 (00:03:07):

Did. It was a really good conference.

Speaker 1 (00:03:09):

Absolutely one of the best ones. He addressed a lot of controversial topics that we don’t see a lot in our meetings. We had a whole section on women’s hernias, which was packed. People were lined up, not all across the wall, in addition to sitting down. Very, very good session. And then we had a very unique patient session, patient advocacy session with multiple patients present and running the session actually. Right?

Speaker 2 (00:03:43):

That’s right. Yeah. It was groundbreaking. And you’ve got to applaud Ali for taking that step and putting patients there, but we got a lot of really positive feedback from that presentation. And surgeons were coming up to us afterwards and saying that they thought it was one of the best of the sessions because it was real and it was talking about what patients want from you as surgeons.

Speaker 1 (00:04:05):

Yes. And it’s very well attended. It was very well attended.

Speaker 2 (00:04:08):

Yeah. We were really pleased with that, how well it went and how well received. We just couldn’t get over how popular it was, and people were coming up to us afterwards and saying, oh, can I just talk to you? Can I ask you this question?

Speaker 1 (00:04:22):

Yeah. I would say it was the first time I had seen a meeting where the patients ran the session within a surgical meeting that was very unique.

Speaker 2 (00:04:31):

Yes, it was unique. It was a great honor for Sue I and Paula to be involved in that and to have, can you explain, sorry,

Speaker 1 (00:04:43):

Can you explain how you got involved? How did this come about?

Speaker 2 (00:04:49):

I used to be a very anti Mesh person, and then I attended a conference as a guest in Edinburgh. It was Andrew just before he finished his presidency, Andrew Debar invited me up and I, that was the turning point for me. I understood then why you use Mesh, what it’s about and why it is, and you go through, you have to deprocess afterwards and unlearn everything. It’s like a cult of the anti Mesh groups and it becomes like a cult and you do process yourself. And then I started tweeting and getting the odd tweet and keeping going and saying I was really sorry for all the wrong messages I’ve been given out. I understood what was happening, why Mesh was being used. And then the British Hernia Society advertised for patient representatives and somebody suggested, why don’t you apply? So I did. And I was fortunate that I was accepted as a patient representative on the board of the British Hernia Society. And from there it was history. I got involved with the European Hernia Society because I said about the anti Mesh groups and there’s not a lot of places for patients to get factual, unbiased information. Yeah.

Speaker 1 (00:06:19):

Now, are you the only patient on that board as a representative

Speaker 2 (00:06:25):

On the board of the British Hernia Society? No, the Sue as well. Oh,

Speaker 1 (00:06:31):

That’s right. Sue, yes. Who’s been involved for a very long time.

Speaker 2 (00:06:34):

Yes. Sue and myself are the patient representatives.

Speaker 1 (00:06:38):

Sue was on our show too.

Speaker 2 (00:06:42):

And then obviously the European Hernia Society. We got involved, we started the Facebook group in just over 18 months. We’ve got nearly 3000 members, so that’s quite a good thing.

Speaker 1 (00:07:00):

So this is a new group?

Speaker 2 (00:07:02):

Oh, very much. It’s a new group.

Speaker 1 (00:07:04):

Wow. I try and follow as many groups as I can, and I was like, why did I miss this one? I didn’t know about this one, but it’s because it’s new.

Speaker 2 (00:07:15):

Yeah. We’ve been about 18 months now, and our members have the benefit that they have the e h s surgeons as admins. So if we have somebody ask a question that I can’t answer or I feel that it needs a surgical input, I can just tag one of our admins in and they can answer and it’s great. It’s fantastic. And everybody’s aware that it’s the surgical group, that there are surgeons there, but they also learn from it as well. They tell me it makes them better surgeons because they understand the patients better.

Speaker 1 (00:07:54):

I’m seeing that. I’m seeing that more often. So for everyone who doesn’t know, there’s the American Hernia Society, which is really northern central and South America, all combined. There are other countries that have their own. So there’s the Mexican Hernia Society and Brazilian Hernia Society, much, much smaller. And then in Europe, every country has their own hernia society. There’s a German Hernia Society, the British Hernia Society, but then every year they come together as a European hernia society, and they choose one of the countries based on the president and the society that hosts the presidents hosts Society for that country hosts the entire meeting. It’s very unique. It’s very different, but it’s so great that the British, her society started this, but very rapidly the European Hernia Society also incorporated into their annual meeting. It’s been great.

Speaker 2 (00:09:05):

Yeah. Last week we were in Prague and it was a pre-conference meeting, so we had brainstorming session to see what industry wanted from the society and what society wanted from industry. And it was really interesting.

Speaker 1 (00:09:23):

That is very interesting. And let me tell you, the American Hernia Society mean just finished this past weekend, and they announced that they not only have a patient advocacy committee, but it includes patients that just started. So American Hernia Society is a little bit behind on that. We’ve always had a patient advocacy society. I was the chair of that or committee. I was the chair of that many years ago, but it was a little bit flailing. We mostly focused on making sure they have enough resources on our website and so on. But this is much, much more active in involving patients. So that’s really great. And I was sitting next to Dr. Hakan who was a prior guest on my show, and very active from a patient advocacy

Speaker 2 (00:10:20):

Standpoint. Oh, Hakan’s lovely. He’s a real patient friend.

Speaker 1 (00:10:24):

Yeah, he really is. Dr. Gök. You can look him up and I believe he’s on right now as well

Speaker 2 (00:10:31):


Speaker 1 (00:10:32):

He’s in Turkey and Turkey. They’re awake right now, so thank you.

Speaker 2 (00:10:37):

It’ll be late for him. Then

Speaker 1 (00:10:41):

We were sitting next to each other actually in Austin when the president, Dr. Yuri Novitsky gave an overview of what’s going on and what’s new, and he announced the patient advocacy. And can I tell you one more thing? So another society is called Sages, S A G E S. It’s the world’s largest laparoscopic meeting that’s being held next year in Cleveland. And they put me in charge of the hernia, women’s hernia section. And they’re trying to integrate having live patients there for as many of their topics as possible. And they don’t just do hernias. They do a lot of general surgery stuff.

Speaker 2 (00:11:24):

I think it’s great.

Speaker 1 (00:11:25):

How cool is

Speaker 2 (00:11:26):

That? It’s fantastic. It’s really progress, and I think it really helps break down the barriers that are between surgeons and patients. And I think patients today, they want to work together with you. They want to be active in the care. They don’t want somebody who’s just going to say, oh, well, this is what we’re going to do. Let’s break down them barriers and talk about it and make the choices together and work together. And as surgeons, you’ve got a lot to learn from us and vice versa. We can learn from you as well.

Speaker 1 (00:11:57):

So when I first started Hernia Talk Live, I would reach out to my colleagues and there were a handful of colleagues that didn’t want to come on as guests because they just weren’t comfortable interacting with patients in such a public way. It’s very interesting to me because I never felt that, but I understand it. And then that’s like three years ago now many of them are asking or hoping to be on the show, which is awesome. And I was sitting at a meeting and there was a surgeon who, I actually didn’t know him. He was a community surgeon I believe, and he kind of leaned over and he said, Hey, you’re doing a great job with this Hernia, Talk Live. I said, oh, thanks so much. He’s like, we all watch it. I was like, you do as surgeons. He said, yeah. So the audience was really intended for our patients to help promote, improve pertinent care by educating patients. And he’s like, yeah, but it’s important for us surgeons to know what the patients are concerned about and what they’re asking and what their thoughts are. I was like, wow, I’m so happy that you think that way.

Speaker 2 (00:13:12):

Yeah, it’s true that, I mean, we try to do it once a month through our Facebook group. We do a live chat and surgeons are really happy at the moment to be involved in that. Yes. Great. So we’ve covered a range of subjects and we have one next month on robotics with Martin. So yeah, it’s fantastic that surgeons really are enthusiastic to talk to patients now.

Speaker 1 (00:13:35):

Yeah. Hakann Dr. Gok sends his love.

Speaker 2 (00:13:38):

Hi, love you too. Hack can.

Speaker 1 (00:13:42):

So, okay. Tell me a little bit about your hernia patient support group on Facebook.

Speaker 2 (00:13:49):

Okay, so we have over 3000 members. And as I say, I’m the main admin. We’ve got Hakan, William Zans, we’ve got Alexis, Andrew, Barbara. We have quite a few. Barbara

Speaker 1 (00:14:06):

Was on my show as well. Yeah.

Speaker 2 (00:14:08):


Speaker 1 (00:14:09):

Dr. Barbara East.

Speaker 2 (00:14:10):

Yeah, she’s lovely.

Speaker 1 (00:14:12):

The new president of the Society for next year.

Speaker 2 (00:14:15):

Very good. So members can come to us for support at any point throughout the hernia journey. Some come before surgery, some come after surgery, but we’re there throughout the whole hernia journey. They have a variety of questions. Some will ask us and they’ve seen some of the adverts in America with the lawyers, is it safe? What shall I do? We try to give them all the unbiased information we can. I’ve put together a list of that. We suggest patients ask their surgeons. They’re not intrusive questions, but they’re just questions. What?

Speaker 1 (00:15:00):

That’s fantastic.

Speaker 2 (00:15:01):

Everybody tends to do, and I hear a lot about surgeons saying that you need to manage a patient’s expectations, but it’s difficult for us to think about that when we’re actually sat in front of you in that consultation room. So part of the questions is for the patient themselves to say, how does your hernia affect you now? How does it affect you physically? How does it affect you socially and with your family? How does it affect your body image? Does it affect you sexually and financially because it is a full package? And then what do you want from your surgery? What do you expect? Because if we’re going to go back to weightlifting or extreme sports, then your surgeon needs to know, or I have a man on the group and he’s a lovely man and he’s been with us since the beginning, but every time I speak to him, he just says, Jackie, I want to go back to work. I need to learn. For the last two years he’s been unable to work.

Speaker 1 (00:16:06):

Well, I’m definitely going to promote your new group on my sites because you need as many patients as possible. It’s such a great, great opportunity. The other Facebook groups are also excellent. They tend to have more of a niche, whether regarding meshes or pelvic problems and so on. But this is a really good general one. It’s a good

Speaker 2 (00:16:26):

General one On the whole, they’re all very, very supportive of each other. We have very few anti Mesh people. There’s probably about six or seven, and the other members tend to control them. So if they do start to say, oh, you shouldn’t be doing this and you shouldn’t be doing that, the other members tend to say, no, hold on. We’ve had Mesh and we haven’t had a problem with it.

Speaker 1 (00:16:52):

Well, I’ll tell you, I feel that your efforts, our efforts, it’s taking the two extremes and moving it more towards the middle. So on the surgeon side, I really do see that they are appreciating that we are overusing Mesh. And I gave a talk at the American Hernia Society about new innovations in surgical techniques, and I talked about minimally invasive options without using Mesh, which is unheard of. Right. And what I said, which is very true, is when we start doing laparoscopic surgery, there was no way to do a laparoscopic repair of any hernia without Mesh.

Speaker 1 (00:17:33):

It mandated Mesh, whether it’s inguinal, ventral, any type of hernia. So by definition, by offering a better or less invasive easier recovery, you had to use Mesh. So that pushed you into somewhat overuse of Mesh, I believe. But now with the robotic technology, it mimics more of the open surgery technique and therefore I can now offer robotic surgery without Mesh, not for everyone, but it is an option. And the fact that they’re having me give these talks and they have sessions specifically about whether we’re overusing Mesh or not, means that the surgeons are listening a little bit and they’re moving away from saying everyone needs Mesh and kind of trying to tailor it down towards the middle where maybe they’ll offer non Mesh options to patients.

Speaker 2 (00:18:27):

I think in the UK, I had a meeting recently with somebody from a Mesh provider, and we were looking at the data on the surgery, on the surgeries that had been done recently, and it showed that umbilical surgery in the UK is now mostly Mesh free.

Speaker 1 (00:18:54):

Oh, that’s good.

Speaker 2 (00:18:55):

Yeah. It showed the trend that it’s come down, the use of Mesh has really come down, and it’s mainly the majority of surgeries now are Mesh free for umbilical surgery.

Speaker 1 (00:19:06):

And I see that discussion too now, surgeon on the podium, it makes no sense to open up a small hole to put the Mesh in.

Speaker 2 (00:19:15):

No, to make it bigger, a bigger hole.

Speaker 1 (00:19:16):

I mean, it makes mean you would think that that would be, and then I think on the patient side too, I am feeling maybe it’s me, we can, I don’t know if you feel the same. I feel that patients have moved from you’re murderer for putting Mesh into people. Mesh is toxic, your evil doctor to, okay, I understand there’s risks and benefits with Mesh and non Mesh, so I’m okay hearing both and being open to the fact that my humongous hernia just cannot be done with that Mesh.

Speaker 2 (00:19:53):

No. What we tell patients is to have that discussion with your surgeon to be open-minded about it, because not all hernias can be repaired, as you’ve just said, some of the bigger ones are not suitable for it. But also to ask the surgeon what Mesh they’ve chosen and why and what benefit is it to you to have that particular Mesh. We all know there’s many, many different me available when patients aren’t just one size fits all.

Speaker 1 (00:20:23):

Yeah, that’s very true. But my concern has always been that unless I’m me or other people like you and others are providing a balanced discussion, what’s left is what the lawyers are feeding on commercials on Twitter, on ads. Right. You saw

Speaker 2 (00:20:52):

My talk. I’ve seen some of those adverts. You’ve

Speaker 1 (00:20:54):

Seen my talk about what we see on TV in the United States.

Speaker 1 (00:20:58):

And so it’s not uncommon for me to have patients say, I don’t want migration of the Mesh. I’m like, Mesh doesn’t migrate except for the plug. Besides the plug. There’s no migration. So I saw a patient who traveled to see me. He was lovely male, older, and a huge hernia in the groin, huge. And he specifically came to me because he knows I provide non Mesh surgery. Now, for him, non Mesh is not a good idea. He doesn’t have enough tissue to close it. This is a humongous hernia. He needs Mesh. So I sat with him, I said, what’s your concern? And he says, sepsis, sepsis. For ral hernias, it’s like, first of all, infection is almost non-existent. It should be a fraction of a fraction of 1%. And I said, I know that there are problems with meshes, especially for the abdominal wall, and there has been reports of Mesh erosion to the bowel and fistulas and infection and sepsis, but that’s for the abdominal wall.

Speaker 1 (00:22:06):

He said, yeah, I know three people who have been septic and I guess maybe one or two had died. I said, where any of them have been in the groin? No. Have you heard of anyone who’s had that in the groin? No. In the groin, we don’t deal with the intestines. It’s not an issue. So I tried to kind of give him some perspective that what he’s saying is maybe applicable to the abdominal wall and there are ways we can discuss that. But for the groin, sepsis, fistula dying is really not an issue any more than walking in the street. So I try to balance that out, but when that’s all they’re reading,

Speaker 2 (00:22:50):

Yeah, I understand that. I tell people as well, my story is not a secret. I have post-surgical chronic pain. I live with it every day. I’m getting treatment for it. And if you do have chronic pain, you don’t have to put up with it. But I also tell them that I would have Mesh again, if my hernia came back, I will have Mesh again, but I will choose my surgeon wisely. I think I’d be more frightened, more particular about choosing my surgeon than whether it’s the Mesh.

Speaker 1 (00:23:26):

Can I ask you the one thing that I’ve noticed on hernia talk.com, just the discussion forum is a lot of frustration because there’s no correct answer.

Speaker 2 (00:23:42):

No, it’s trial and error

Speaker 1 (00:23:44):

Rate. What’s the chronic pain rate? What’s the rate of Mesh reaction? It depends on the patient, the surgeon, the surgical technique. We don’t have data like that right now. So one of the members who’s currently watching has the same question. What’s the true rate of after issues, be it autoimmune problems, movement pain, organ urinary problems from Mesh usage, inguinal Mesh versus ventral Mesh? I try and say, okay, this is what the data show. There’s a range. There’s no exact number. Chronic pain can rate. Some data showed 3%. Some people say 20%, somewhere in the middle you are thin and healthy and male and older, so you’re going to be on the lower end of that scale. Or you got autoimmune disease and you are super thin and are female, you’re going to be at the higher level of that, that kind of stuff. But it’s very frustrating because they’ll go to another doctor

Speaker 2 (00:24:56):

Who tell them something completely different. Yes.

Speaker 1 (00:24:59):

So how do you address that?

Speaker 2 (00:25:02):

I don’t know. A lot comes down to how the patient feels. And we also tell them to question you on your successes and not just yours but the institution because we know that some surgeons will cherry pick the easier surgeries, but then at the end of the day, you go with your gut, don’t you? It’s hard because who’s telling the truth, but you’ve just got to put your trust in your surgeon. If you feel confident in their abilities and you’ve done all you possibly can with your prehab, you’re in the best possible physical health you can be before your surgery. The risks are low.

Speaker 1 (00:25:52):

It’s low, yeah.

Speaker 2 (00:25:54):

The risk. And there’s risks with any surgery and the risk of chronic pain, Mesh free. You can get some studies that will say it’s just as much or even higher with that. So I would say get yourself as physically fit as you possibly can and make sure that your surgeons, your trust them, you’ve got confidence in them and then the risk is low.

Speaker 1 (00:26:22):

And what do you say to patients? What’s your advice on how to find surgeons? I tell people, see more than one surgeon.

Speaker 2 (00:26:31):

Absolutely. Do your

Speaker 1 (00:26:32):

Research, have your questions prepared when you show up. But at the end of the day, I don’t feel that patients need to get a surgical degree before they get their hernia

Speaker 2 (00:26:42):

Repair. No, no. And I think sometimes

Speaker 1 (00:26:45):

Of this suture and this how many knots you’re going to put in it and which is going to be tap or tap or I feel like find one trust that they’re going to do the right doctor.

Speaker 2 (00:26:57):

To be honest with you, I’m not interested in whether you perform, if you’re going to perform a tap or a tap on me as to whether you’re going to fix me, what meshes you’re going to use, I would ask you. I’m not particularly bothered about that, whether you’re going to do it open, laparoscopic, if you’re going to use the robot, those are the questions I will be asking. The surgical procedure, maybe ask about how you’re going to fasten the Mesh in place. That’s fine. But then again, the other questions, I don’t think really patients need that. I think you can find too much information and it just fogs your brain then you just,

Speaker 1 (00:27:41):

It does need,

Speaker 2 (00:27:42):

It does

Speaker 1 (00:27:43):

Very frustrating

Speaker 2 (00:27:45):


Speaker 1 (00:27:45):

I get, I just got a flat tire, I took it to the dealer. I’m not asking him what brand tire he is putting in and what size and everything. I mean, it’s different I understand than surgery. I’ve had my own surgery before. I’ve been very open with it here and I know who these surgeons are personally. We’ve shared patients, et cetera. But I still would see multiple surgeons and then make sure that they’re thinkers. I think surgeons that are thinkers are the best. And the reason why I say that is not everything is straightforward. So if they’re in there doing their operation and they get a surprise, I want that thinker.

Speaker 2 (00:28:30):

Yeah, you want yes, absolutely. To

Speaker 1 (00:28:32):

Know what to do.

Speaker 2 (00:28:34):


Speaker 1 (00:28:34):

If they’re not thinkers in their plan for me, then probably during surgery, they won’t be thinkers either. That’s the way I think of it.

Speaker 2 (00:28:44):

And I think somebody who’s got the time, if I went into a consultation and say, now my surgeon rushed me before I had my hernia surgery and I knew then know now what I didn’t know, then I just went along with it for the ride, but I would’ve insisted on another surgeon. Now I was rushed. I wasn’t given the opportunity to ask questions. And if surgeons like that and they won’t sit down and discuss things with you, if you feel you’re being hurried that you can’t ask what questions you need to go somewhere else, if you surgeon hasn’t got time and they can’t answer your questions, then go somewhere else.

Speaker 1 (00:29:34):

Here’s a

Speaker 2 (00:29:35):

Comment, don’t get to The worst doctor you can go to is Dr. Google,

Speaker 1 (00:29:40):

Dr. Go. And I also don’t recommend after tooth failures, maybe after one failure you can go back to the same surgeon if they know what they’re doing. But after tooth failures,

Speaker 2 (00:29:50):

Tooth failures, no. Someone else. Yes, absolutely.

Speaker 1 (00:29:54):

Here’s a comment in question. I have a concern about when my doctor put the Mesh in me and when it became an issue, that same doctor said they don’t remove Mesh or it’s impossible to remove all Mesh. I think the Mesh can be a good thing, but to me not a good thing. When doctors say they don’t remove Mesh, if a doctor is trained to put Mesh in, why are they not trained to remove it when it becomes a problem?

Speaker 2 (00:30:18):

That’s a fair comment, but I’ve seen patients who’ve gone back to the hernia doctor and more damage is done removing the Mesh than if you’d left it in. I think hernia, it’s complex and they need to go to, anybody can do, a general surgeon can do a hernia repair, but for something like that, it needs to be a hernia expert.

Speaker 1 (00:30:47):

I mean, there’s not enough of us around for patients to go to a hernia expert.

Speaker 2 (00:30:51):

No, they’re not. Definitely not.

Speaker 1 (00:30:53):

Usually the thinkers will at least say, okay, this is outside of my purview. You definitely need a hernia specialist. I’m going to send someone to you. So I think that’s why finding a surgeon that doesn’t just, not just a hernia. I’ll take care of it, not think twice about it, but if you feel like they’re sitting down with you, it’s not a rushed appointment, they care about hernias, then that’s usually good enough because once there’s a problem, you would suspect them to either take care of themselves if they can or have a connection or understand they have to refer.

Speaker 2 (00:31:29):

I also think it’s a good idea if they’re member of a society like the A H S or the E H S or the British and Society because then they’re keeping up to date with all the latest research and all the latest procedures. And you also run the training courses, don’t you? They have the robotic courses, they have the cadaver courses, so they’re keeping up to date with everything. So I think that’s important.

Speaker 1 (00:31:54):

Yeah, I mean I have surgeons that I know that want to brand themselves as hernia surgeons, but they don’t do anything based on the guidelines even. It’s so interesting how people want to just call themselves names. Dr. Gok is on here. He is wondering, have you had people reach out to chat G B T to get answers from

Speaker 2 (00:32:24):

No, we haven’t. For

Speaker 1 (00:32:25):

Their problem?

Speaker 2 (00:32:26):

No, we haven’t. And I’ve seen that doing this thing at the moment, aren’t they on Twitter comparing your answers to what chat gpt is? No, I think the questions I’ve seen and the ones that chap G P T have given are quite good. I think you did something, or was it Vaughn who put on, he’d asked Chuck g p t to recommend himself and Nick gave up a list of questions.

Speaker 1 (00:33:05):

Yeah, said is Dr. Nikolian, by the way, he was a guest on as well, Dr. Vahagn Nikolian from Oregon Health Sciences.

Speaker 2 (00:33:14):

I actually shared that in our group because I thought that gave up a really good set of questions that Chap G P T should ask. So yeah, I thought that was quite good.

Speaker 1 (00:33:26):

He posted two questions, I think one was about a hernia repair and the second was is Dr. Nikolian in a good surgeon or something?

Speaker 2 (00:33:33):

Yeah. And he said, I couldn’t comment on that because I dunno, but these are the questions that you should ask a surgeon.

Speaker 1 (00:33:40):

Yeah. Here’s some live questions. How do I know if my issues with pains, small bowel obstruction and the inability to poop without MiraLax and the stool softener is due to adhesions or incisional hernias. Issues start six months after surgery. Now the surgeons don’t want to touch me with the two meshes to free up my intestines and mobile cecum to repair the intestines. Should the Mesh be cut to get to the issue? How do patients know that there are issues related to Mesh and non adhesions? I mean, you need to see a specialist who understands where is the Mesh, what was the technique used? What are the risks of adhesions with that Mesh? And sometimes imaging also helps identify that you

Speaker 2 (00:34:27):

Need to see a hernia expert for that.

Speaker 1 (00:34:30):

Yeah, I would say so. I would not mess around by seeing three non-specialists, just save your money and go see one hernia specialist. That’s kind of my shtick. Can we talk about prom? P R O M, which is patient reported outcomes measures. It’s the idea that in addition to the surgeon putting information into a database saying, I did this operation, I saw them at two weeks, they’re doing well. I saw them at one month, no hernia recurrence. That same database also reaches out to the patient. How are you doing? Do you have any pain? Are you able to go to work yet? It’s such a vital portion of the data that we’re trying to gather, but we have a very difficult time having patients fill out these feedback forms.

Speaker 2 (00:35:29):

Yeah, I think sometimes because the majority of patients who do have hernia repair just go on to have a happy, healthy life and never look back, don’t they? And so to them it’s not an issue. They just get on with it. It would be great if everybody would fill it in

Speaker 1 (00:35:48):


Speaker 2 (00:35:48):

And it would be ideal. I know the British Hernia Society are almost ready to start their database to start capturing data in the UK, and the more you can get, patients are going to be able to access that data as well to look at their own data.

Speaker 1 (00:36:07):

I feel that the more patients can provide that data, the more we can help this difficulty they have of saying, well, what’s really the data? What’s chronic pain? Well, the patients need to tell us if they’re in chronic pain, the patients need to tell us if they’re going back to work because after maybe a month, most doctors do not that do hernias, do not see their patients. That’s the reality. Those they’re interested to follow our patients forever, but we don’t know if a year later they went to the emergency room or to a different hospital and had this lady adhesions. I’m sure her surgeon, unless she went back to the surgeon, but if she didn’t go back to her surgeon, all these adhesions and bowel obstructions that she’s having, that surgeon may never capture that as a complication of the home. No,

Speaker 2 (00:36:58):

Yeah, I understand that. And that’s the one thing what we do see in our group was that patients are still exhibiting pain months later, but it’s not necessarily chronic pain. It’s not there all the time. And I think as well that surgeons need to manage patient expectations on what recovery is going to be like after the surgery.

Speaker 1 (00:37:19):

Yeah, this is true.

Speaker 2 (00:37:22):

It’s a difficult surgery to get over.

Speaker 1 (00:37:26):

You mentioned you were part of the guidelines. Are you involved in the guidelines for

Speaker 2 (00:37:32):

We’ve put together a group of patients to take part in the incisional guidelines, not the incision, the inguinal ones, and we have done some incisional with the Italian Hernia Society.

Speaker 1 (00:37:48):

That’s fantastic.

Speaker 2 (00:37:50):


Speaker 1 (00:37:50):

The process?

Speaker 2 (00:37:54):

We had to answer some questions to start with. We had a Google form from Chere and it was interesting because as a surgeon you deal in small percentages of if I did one procedure, if we said this one procedure and then maybe 2% better success rate with the other procedure, which would you prefer? Well, 2% to a patient wasn’t coming out as enough of a difference. We wanted bigger odds than that, and then we had a couple of hours zoom call, so we talked through everything and at the end of it, it came through that for a surgeon, a recurrence was a failure of surgery. Yes, but to the patient, recurrence wasn’t a failure. Chronic pain was a failure, the risk of chronic pain, so that was quite interesting.

Speaker 1 (00:39:01):

Yeah. We’re starting to appreciate the fact that hernia recurrence is not as important to patients because when we say, oh, that has a high recurrence rate, we’re seeing like 5%, 10%, maybe even up to 30%, whereas patients like, oh, that’s like 70, 80% success rate. That’s not bad.

Speaker 2 (00:39:21):

That’s what we were saying, that we need bigger odds and those odds are very small, so it wasn’t really an issue for the group.

Speaker 1 (00:39:32):

With regard to chronic pain, breast implants, when you get those in, patients are told after about 10 years you’re going to see contractures and you need to replace it. Or if you get a knee replacement after 15 years, you need a new knee hip. The same. We don’t say that about hernia repairs. No. We kind of promise a perfect repair with no need for anything for the rest of your life. What do you think of that? You think we should change how we talk about hernia

Speaker 2 (00:40:02):

Repairs? Yes. Yeah, I do you think

Speaker 1 (00:40:06):

Patients will be okay with that? I feel like the patients expect higher or maybe they don’t. They’re just worried about the client.

Speaker 2 (00:40:12):

They just want the truth. They want to know the risk, don’t promise things that don’t happen. I was told that if I felt it, just take it out, but then when it came to it and I can feel it, it can’t come out. Nobody would take it out and it’s not an operation. So then patient gets angry. You need to just discuss slightly that there is this risk of chronic pain, but there are treatments available and you don’t have to live with chronic pain. If you do experience chronic pain, find a hernia specialist, a pain specialist, a hernias surgeon who deals in pain management, and there are things that can be done and they’re not always difficult and invasive procedures that you need to go through.

Speaker 1 (00:41:08):

I’ve had several patients lately and in the past that have a designated patient advocate. Sometimes their health system provides it. Sometimes they actually pay someone to be their advocate. Can you talk about that a little bit?

Speaker 2 (00:41:25):

We don’t really have that. Patients can message me. I’ve never done one-to-one patient advocacy, but patients, they message me, they ring me, they can email me, they can post. I’m there for any patient. If any patient needs anything, I will be there for you no matter where in the world you are. I have people in America, I have people across Europe, I have people in UK. I’m there for patients. They only need to private message me through the group. They can email patients@europeanherniasociety.eu. We are always there for you. I will support anybody whatever they need. If they need just a friend or just a ear just to hear somebody, we’ll give you that.

Speaker 1 (00:42:15):

So amazing. Yeah. In the United States, there are professional people that are patient advocates. They will come with you to the office, they’ll take notes. They will make sure that you understood

Speaker 2 (00:42:30):


Speaker 1 (00:42:31):

Because there’s a lot going on in the minds of a patient. They come out with, I forgot everything.

Speaker 2 (00:42:38):

So you’re

Speaker 1 (00:42:38):

An objective person and then they’ll help you maybe get approval for your imaging study or get an approval for your surgery. There’s also a handful of patient advocates that are assigned to patients within a system. So let’s say it’s usually a ligation issue. So for example, you fell at your job and you got a hernia. That company, your employer may assign a patient advocate to you because now you’re suing your employer for having the water on the floor that made you slip, that kind of stuff. So they’re assuring that you’re getting efficient care in the system to keep you happy and to make sure that if you need a CAT scan or whatever, that your employer’s insurance company readily approves it because you’re kind of a ligation risky person potentially. And they’re trying to diffuse that by offering you a patient advocate. Sounds like you don’t really have that issue so much in the

Speaker 2 (00:43:48):

No, we don’t. We don’t. No, that’s not something that we actually do. We can advise patients and we can just support them and say, I’ll listen to anybody but to go to appointments and things like that because we have people from everywhere all around the world. It’s not really practical.

Speaker 1 (00:44:10):

There’s some doctors that do that too, but often they’re not doctors. They’re people that are just savvy

Speaker 2 (00:44:16):

And I think that’s great that people can do that and they’ve got that support and if they need it, that’s fantastic.

Speaker 1 (00:44:28):

What’s your message about the lawsuits? Are patients just getting used in these lawsuits?

Speaker 2 (00:44:36):

Yes. There’s only one person that them lawyers are looking out for and that’s their pocket. I think they do a lot of damage and cause a lot of upset. Those, I call them ambulance chasers. They do a lot of damage. They’re not looking out for the patient. They’re just looking out for you. There have been issues. We are all aware of that, but no, try not to listen to them. Try not to listen to us.

Speaker 1 (00:45:06):

I get patients that have a serious problem that needs to be addressed, plus they’ve heard that they have a case and I often tell them, put that case on hold. Get yourself better.

Speaker 2 (00:45:20):


Speaker 1 (00:45:20):

One a case or money is going to make you feel better and have a good life. And then if you want to pursue lawsuit, whatever, go ahead. But don’t expect millions of dollars.

Speaker 2 (00:45:29):

No, because the only person that’s going to get millions of dollars are the lawyers.

Speaker 1 (00:45:34):

And can you explain why you say that?

Speaker 2 (00:45:37):

I’ve seen all the stories where people have got these big lawsuits and then they say that they’re not getting that much. It’s only the lawyers are taking such a big percentage that the patient is actually at the end of the day, left with not a lot, and the patient is the one that’s going through all the stress, reliving everything. It is like a post-traumatic stress disorder you’re going through and you’re bringing it all up over and over and over again. I can understand being angry. I really can, but life’s too short to be angry. That’s true. Life’s too short. And if that’s what you want to pursue, pursue it. But I maybe go for someone who’s not doing a class action,

Speaker 1 (00:46:27):

Not a class action. That’s where you get the least amount of money. Yes. Yeah. And do you feel that? Well, I must say though, there has been some good that’s come out of these lawsuits because industry also is, has their own best interests in mind and often it can conflict with the patient’s best interests. So there have been things that have been exposed

Speaker 2 (00:46:58):

By these

Speaker 1 (00:46:59):

Lawsuits about how Mesh is manufactured and so on that

Speaker 2 (00:47:02):

Where they’ve got the product from. There has to be more transparency. I think industry needs to be a little bit more open with them and a bit more transparent, but they are getting better. I can go to conference and have a conversation with them and they’ll be open about how the Mesh is manufactured and all the issues. So it is getting better, but I do think there needs to be a bit more transparency. A bit more openness.

Speaker 1 (00:47:34):

Here’s a clinical question. It says I have an umbilical hernia. It’s small, about two centimeters. So two centimeters is not small. One centimeter would be small, two centimeters is a medium size. Because of my second pregnancy, I’m looking into surgery without Mesh. And the surgeon said he does not do absorbable sutures. He only uses permanent sutures, but he couldn’t tell me why. He said it is how he was trained. Do you know why surgeons don’t use absorbable sutures for this? Well, he was trained correctly. Hernias that are repaired with absorbable sutures have a higher recurrence rate than with permanent sutures because once it’s absorbed, you no longer have the permanent, the scaffold. Scaffold for the suture two centimeters. It’s really at a level where you would want to consider using Mesh or if you’re a tummy tuck candidate, get a tummy tuck and use the tummy tuck as your biologic Mesh. And definitely I would personally use permanent sutures. You’re already at risk of recurrence with a primary non Mesh repair of a two centimeter hernia. So that’s my answer to that one.

Speaker 2 (00:48:47):

Also, possibly, have you finished having your babies yet?

Speaker 1 (00:48:52):

Oh, that’s good point. Good point. Yeah. You don’t want to fix your umbilical hernia if you can live with it until you’re done with your pregnancies. Because what happens, right? Yeah. You have your third baby and a pop

Speaker 2 (00:49:06):

Pop again,

Speaker 1 (00:49:07):

And now you have a four centimeter hernia. Then you really need an abdominal wall reconstruction. You mentioned you had a meeting that included industry. Can you tell me how that went and

Speaker 2 (00:49:21):

It went really, really well. We were really well received. It was planning for the hernia conference in Prague, so we talked about all different subjects for the industry symposiums, what subjects they could cover. And to be honest, everybody was like, oh, it’s a patient. Can we talk to the patient? I’ve got email address. So next month we’re doing a talk on our Facebook group on robotics. So I was able to email somebody, say, can you send me some information about the robot? Then I can prepare to talk about it. So it’s to have those contacts I keep in touch with, there is a lady from Telebahia who lives nearby. There’s a lady from Bard who lives nearby, so they contact me sometimes to tell me what’s happening and keep me up to date. That’s great. There was somebody from binders, some QualiBelly Reuben binders. He lived nearby and they’re really comfy about them binders, especially for people like me who aren’t very tall. So we had a meeting and I said, well, it’s okay to have these binders in the hospital, but the patients are the ones who need to be able to obtain them because it’s for patients. So now they’re going to sell them on Amazon as well. So that was a product too.

Speaker 1 (00:51:00):

Oh, tell me more about that.

Speaker 2 (00:51:04):

They’re going to open a store on Amazon so patients can buy the binders because binders can be very, very uncomfortable.

Speaker 1 (00:51:13):

The abdominal binders? Yeah.

Speaker 2 (00:51:16):


Speaker 1 (00:51:16):

It’s hard to know. It’s hard to know which are the good ones.

Speaker 2 (00:51:21):

Yeah, so the Ruben, they weren’t cheap ones, but they were comfortable and they were in staff. We have a

Speaker 1 (00:51:30):

Handful that we like. I should do a poster. I did a post on Inguinal hernia trusses. Those are very difficult to wear and they’re not some good ones. The Comfort Tru is my favorite brand, so we did a show on that, but I should do one on binders. I’ll make a note of that to myself because people are always wondering, what’s the best binder to use?

Speaker 2 (00:51:52):

I wear

Speaker 1 (00:51:53):

Some of them are not good.

Speaker 2 (00:51:54):

No, they’re not. I like the vests, the hernia vest.

Speaker 1 (00:51:59):

Oh, does it have a shoulder?

Speaker 2 (00:52:03):

Yes. It’s just like a vest, but the abdomen is the supportive bit.

Speaker 1 (00:52:10):

Which brand do you remember?

Speaker 2 (00:52:13):

I like vanilla blush.

Speaker 1 (00:52:16):

Oh, vanilla blush. Yeah,

Speaker 2 (00:52:17):

With it.

Speaker 1 (00:52:19):

That has a lot of pregnancy stuff.

Speaker 2 (00:52:21):

Yeah, lots of pregnancy, lots of stoma.

Speaker 1 (00:52:25):


Speaker 2 (00:52:26):

Goods and I like the Rueben as well. Those are Theen.

Speaker 1 (00:52:33):

There’s one called Condon. What’s the name of it? With the C Caroled? I like the ed. The three panel. Those are very soft, like a t-shirt.

Speaker 2 (00:52:51):

Okay. The vest are like that. It’s just wearing a T-shirt.

Speaker 1 (00:52:55):


Speaker 2 (00:52:56):

Very good. But also what we can also recommend sometimes is that patients wear the shapewear, like Spanx.

Speaker 1 (00:53:06):

Yeah. The problem with Spanx itself is so tight that I feel like putting it on and off actually stresses you more, but their made and form I think is a good brand. It’s not as tight.

Speaker 2 (00:53:18):

Yes. Yeah. We have shapewear over here and sometimes you just put a pair of them on,

Speaker 1 (00:53:27):

But sometimes you want the tank top that out or the underwear that goes up to the breasts. Yeah, that’s very true. What do you tell people that feel that any industry relationship is a bad one?

Speaker 2 (00:53:43):

I think it’s only a positive thing. We’ve got so much to learn from each other. True industry. I know they have a bad press, but they do put so much back into it. They put stuff into research, into education. They sponsor the conferences. I’ve been on training courses at hospitals that industry has sponsored. I don’t have a problem with it. I think you have to be open about it, but nobody’s getting a foreign holiday for a fortnight out of industry, or at least hope they’re not. But going to a No, I haven’t got a problem.

Speaker 1 (00:54:32):

Yeah, I feel well. The United States is much more strict about relationships between physicians and industry. We have a public database. You can go look up everyone. We have to let all patients know that they can do that. The relationship is a little bit more lax and actually stronger in Europe. Most of the surgeons that I know in Europe have some type of connection with industry where it’s not so necessarily in the United States. There’s some hospitals, you can’t even have a pen with the company’s name on it, like a pharmaceutical company. They used to give out pens.

Speaker 2 (00:55:13):

Oh, I got allowed to collect them.

Speaker 1 (00:55:17):

Yeah. Well, in the US meetings, there’s none of that. They can give out chocolate and candy. That’s about it.

Speaker 2 (00:55:24):

No, I like the pens, but one thing we did tell them at the meeting in Prague was that they had to have a good coffee counter and a good tea counter.

Speaker 1 (00:55:34):

This is true. They need actual a true well is Czech Republic known for its coffee? I’m not so sure

Speaker 2 (00:55:43):

It was coffee, but there wasn’t a lot of tea there and it’s like a cup of tea.

Speaker 1 (00:55:50):

The tea was fabulous in Manchester. I must say. I brought home a lot of tea with milk kind of

Speaker 2 (00:56:01):


Speaker 1 (00:56:01):


Speaker 2 (00:56:03):

There was none of that in Barcelona that I missed that in Barcelona.

Speaker 1 (00:56:06):

This is true. This is true. Dr. Coke says only beer in Prague. That’s true, actually. True. We’ll have to do that. Non-alcoholic beer. Let’s see. Here’s some more questions. Question, would you recommend a particular type of Mesh? Really? No. There’s lightweight heavyweight. It depends on the size of your hernia as opposed to the actual brand. There’s no one brand that I think makes a difference. Well, that’s question. I hear people say their hernias are painful before repair. I’ve never experienced any pain just when maybe I have some gas, but that’s it. That’s a very important detail. If you don’t have pain, you often don’t need a hernia repair at

Speaker 2 (00:56:54):

Least. No. There’s nothing wrong with watchful waiting as a treatment option. So long as you are happy with it and the patient’s happy with it and you’re aware of what symptoms to look out for and what problems you monitor it not an issue with what we’re waiting, and that’s one thing that I did say on the Twitter post last week with the chat. G p t nobody had asked the patient, does the patient actually want an operation? Because not every patient wants a hernia repair. Some of them are actually quite happy to live with the hernia for the time being. Don’t automatically assume that we all want to go into surgery

Speaker 1 (00:57:38):

And also don’t automatically assume that you shouldn’t be seeing a surgeon if you don’t want surgery because we have a lot of non-surgical options like trusses and changes in your health and your medications or changes in your bowel regimens or your bladder function that maybe weight loss that can help you actually get less problems from your hernia.

Speaker 2 (00:57:59):

That’s one thing that my next project is going to be with the new patient group is we want to put together an advice for patients to help living with the hernia, which is practical tips that they can help with the diet and they sleeping and wearing clothes. What

Speaker 1 (00:58:19):

That, listen, anything you’d like me to share either on my website or on my own social media, I’m happy to do Absolutely.

Speaker 2 (00:58:26):

Come and have a look our, I’ll send you an invitation. You can join.

Speaker 1 (00:58:30):

I’ll definitely do it. Do you want share with people how they can get involved and

Speaker 2 (00:58:35):

They can get involved? They can join our group. It’s called Hernia Patient Support Group. Maybe Hakan can post a link. He’s our tech group hack. He’s the master. Everything.

Speaker 1 (00:58:51):

Yeah. He can go on my Facebook page for this actual Facebook and just add, just

Speaker 2 (00:58:58):

Pause the link. That’ll be great. And then anybody’s welcome to join us

Speaker 1 (00:59:01):

If you’re still awake. Are you awake?

Speaker 2 (00:59:05):

We have also started chat rooms. We’re aware not everybody speaks English, so we are trying to get people involved who don’t actually speak English because we feel that they’re not getting the support all the time that they need.

Speaker 1 (00:59:19):

That is so true. That is so true. But I don’t know. I feel like we have a lot of international people on hernia talk.com. We have some Indian,

Speaker 2 (00:59:30):

We do have some Indians have a lot of Philippines, but not a lot of Europeans, so that’s something that we are trying to push with the E H S members to get their patients to join us because the 3000 people we have, they all really found it useful to have us there, and we get a lot of positive feedback. a lot of thanks saying, oh, I might not have gone through with this. I’ve really struggled. You’ve really helped me. So thanks for the group.

Speaker 3 (00:59:59):

Positive feedback and lots of thanks and oh, I, Matt not have gone through with this. I’ve really struggled. You’ve really helped me, so thank you. Thanks for the

Speaker 1 (01:00:07):

Group. Yeah, exactly. Totally agree. Okay, well this has been fantastic. So much great information. Thank you. It’s been

Speaker 2 (01:00:17):

Really good fun

Speaker 1 (01:00:18):

Being a fantastic guest, but this is beyond what I thought because

Speaker 2 (01:00:22):

It’s gone really quick. It’s been great fun.

Speaker 1 (01:00:25):

I just really love that you’re a patient that’s very logical and you approach all of this not too emotionally.

Speaker 2 (01:00:35):

No, we’ve got to take a step back

Speaker 1 (01:00:38):

And I think that’s a great, great perspective and I hope other people appreciate that in you.

Speaker 2 (01:00:43):

Yeah, sure. I hope so too. No, it’s been great to chat with you, Shirin, and I hope See you soon.

Speaker 1 (01:00:49):

I can’t wait. See you soon. I’ll actually, I may come to London right before Prague, so we’ll see. Yeah, I’ll let you know.

Speaker 2 (01:01:00):

Say I’m in lit plans. I’m in Lithuania next month at the conference.

Speaker 1 (01:01:06):

Oh my, oh, one more thing. Since we’re talking about patient advocacy, soon, hopefully before the end of the year, there’s a website that I will be launching called the hernia score.com, and it is a machine-based learning algorithm that provides you sex-based prediction of whether your groin pain is or pains, whatever, as due to an angle hernia. So you plug in your information, all your symptoms, it spits out a score from zero to a hundred as to the percent chance that a hernia repair will help you, because sometimes people don’t really know if their pain is from their ovarian cyst or their hernia, so I’ll announce it.

Speaker 2 (01:01:52):

Yes, absolutely. We’ll look forward to seeing that.

Speaker 1 (01:01:55):

Okay, very good. All right, everyone. That’s it. Thank you. That’s a wrap. Thank you. Thank you being a fantastic guest and staying up at night, and thanks everyone else for joining and you’re great questions and interaction. Do subscribe to my YouTube channel at Hernia Doc and our new podcast, Hernia Talk Live, because you can catch up with all the previous sessions we mentioned. Many people who have been my guests before can go back and listen to their stories and how they answered your questions. I’ll see you next week and hope to see you also online and we did share that link on our Facebook page already. So congratulations. Thanks everyone. Thank you. Bye. Bye.