Podcast Interview with ICUsteps.org CEO and Co-founder Peter Gibb

Hi, it’s Patrik Hutzel from INTENSIVECAREHOTLINE.COM , where we INSTANTLY improve the lives of Families of critically ill Patients in Intensive Care, so that you can have PEACE OF MIND, real power, real control and so that you can influence decision making fast, even if you’re not a doctor or a nurse in Intensive Care!

Listen to this second INTENSIVECAREHOTLINE.COM podcast, where host Patrik Hutzel interviews the ICUsteps.org CEO and Co-founder Peter Gibb!

Patrik and Peter talk about Peter’s remarkable and inspirational story of how he survived his ICU stay as a Patient, what challenges he had to overcome and what eventually led him to start his own support group and help other ex-Intensive Care Patients and their Families to find meaning in their ordeal and how to effectively deal with their challenges after coming out of Intensive Care!

Sincerely, your Friend

Patrik Hutzel

Here’s the interview transcript:

INTENSIVECAREHOTLINE.COM Podcast

Interview with Peter Gibb CEO and co-founder of ICU steps.org

Patrik: Hello and welcome to INTENSIVECAREHOTLINE.COM , where we help Families of critically ill Patients in Intensive Care to instantly improve their lives so that they can have more control, more power and more influence!

I’m your host, Patrik Hutzel, founder and editor of INTENSIVECAREHOTLINE.COM and as part of our interview series, today I’ve got a very special guest, Peter Gibb, the CEO and co-founder of ICUsteps.org, a support website for ex- Intensive Care Patients, their relatives and ICU staff, to support ex- ICU Patients and their Families through the long road of recovery from their critical illness.

Welcome Peter, thank you for coming on to the show and how are you today?

Peter: Hello Patrik, I’m very well and thank you and thank you for inviting me!

Patrik: Your more than welcome, I mean we’re always looking for great stories and for inspiring people and Peter you are the co-founder of ICUsteps, which, as we mentioned is a support website for ex-ICU Patients that I mentioned in the introduction. And we come there to the first question straight away. What has led you and more importantly, what has inspired you and what was your main motivation to start such a great and much needed support platform? And I’m sure many of our listeners are probably also interested in your personal story, if you are willing to share.

Peter: Of course, of course not a problem. Well, it started for me 10 years ago, I was a keen amateur mountain biker and in training for a holiday in the French alps, I actually, in which near my home had a mountain biking accident, whereby I apparently, I don’t remember the accident, or the day of the accident myself, but in taking a jump that I’ve done many times before, something went wrong and I landed head first full speed, resulting thankfully I was wearing a bike helmet, which saved my life and, but I was still left with brain haemorrhage, a broken neck, a broken back in two places, a broken rib and a punctured lung.

I was fortunate enough to be airlifted by the local air ambulance to Milton Keynes Hospital, where I spent just over three weeks in Intensive Care.

My first memories were very late on in Intensive Care and I had no memories of the accident, I had no pain because I was being pain managed and because of the head injury and I believe delirium, I didn’t believe any of the stories that have been told to me. So it was very much like waking up in the matrix.

I spent a further three weeks on a general ward, where none of the other people around me or did the health care professionals seem to understand what I was going through. I believed that this was just me, this can’t be normal and it got to the point where I emotionally blackmailed my wife to help me escape.

Patrik: Wow!

Peter: I told her if she didn’t help me I would try when she wasn’t there and I probably end up dead somewhere! And again, it’s partly in retrospect I can see the immense pressure that relatives are under at that time as well! But she did help me, I think she was hoping that the staff would stop her and would understand the situation and get me the help I needed at that time. But they didn’t and so I escaped. I happened, luckily through several forms of help, partly through the follow up with the head injury nurse that I had seen.

I was also fortunate enough to be in one of the 30% of UK hospitals with an ICU follow up clinic and because of my head injury I also was seen by the local head injury clinic.

So that was the support that I had after the hospital. Then probably about 12-18 months after the accident and some follow up visits that I mentioned, I got a letter from the follow up nurse, inviting me back to a meeting, to see if there was something we could do, to help other people that are going through Intensive Care.

I felt a bit of a fraud because I didn’t really remember being in Intensive Care. I didn’t think that three weeks in Critical Care was that long of a time.

Three days is regarded as quite a long Critical Care stay.

I went along to the meeting largely because, well two points I think.

One, an immense amount of guilt, for all the trouble I caused so many people through my own stupidity and also because I believed that relatives needed something. If at that time I had an understand that during those darkest hours, when our lives as Patients are in the balance, we, we’re kind of OK, you know, we were being sedated, we were being pain managed, but it’s our relatives who are living each second not knowing what the outcome is going to be and I cannot imagine how dreadful that must be.

As it turns out when we end up and drop hints, it is actually still the Patients that need the support at those final stages of normalisation back to being a normal person rather than a Patient again. For relatives they find help as well to be able to talk to other people who can actually understand them, because they’ve been through those experiences as well.

Patrik: Absolutely! I mean what I can see, what you’ve just described, I mean, from my perspective, having worked in Intensive Care for 15 years, once the clinical things are under control, once Patients are being managed, quote and quote “managed”, then it’s all about Family management. But , what do you think are the main challenges that former Intensive Care Patients and their Families are confronted with? And I mean, I can see some of those challenges on your website when ex- Intensive Care Patients describe their nightmares, their pains their frustrations. And how does ICUsteps.org help those Patients? If you can sort of describe that a little bit that would be great.

Peter: I think, you’ve touched on it already. For people that actually are “in the know” and sadly it seems to be the minority, the people that actually work in Intensive Care, is the physical, the psychological and the cognitive deficits that Intensive Care Patients can be left with.

It seems to be a result of critical care and the treatment itself, rather than necessarily the specific reason for critical care admission. That’s always the thing that never ceases to surprise me, is despite the vastly different reasons for our admission to Intensive Care that we have this commonality of experiences, this great big ball of stuff to deal with and so often we go through it believing we’re the only person in the world that’s ever experienced this, because if it was normal somebody would have told us.

Patrik: And it sounds very personal what people are going through. It’s sort of, even though there are commonalities, the way people describe it from what I can see, it’s very emotional , it’s very personal, sort of, you know, it’s almost they can’t believe it themselves, that’s what it sounds like to me.

Peter: You’re absolutely right. I mean, I think, again, one of the cruelties for me, is that we will be managed, as I say pain managed, so we won’t be in our right mind, we won’t be fully aware of what’s going on and really in that time in Intensive Care and I know it varies depending on how long you’re in the ICU and the specifics of your treatment. But so often it comes to the point, where you start to be weaned off the drugs, you then start to get your own mind and personality back and then bang, you’ve gone out of Intensive Care.

And you’re removed from the people that actually understand and can explain what the after effects would be, what’s normal, what’s OK and the people around you from that point, be it general ward staff or afterwards into the community, say you’re GP, will have very limited understanding, if any, of the sacrilege of critical illness, the things that can follow on from the treatment.

Patrik: So what you’re describing there is almost like, OK well in ICU health professionals have an understand of what’s happening but as soon as Patients leave Intensive Care, whether it’s ward nurses, GP’s, any other professionals that you come in contact with have really no idea, understanding, empathy for the horrible experience you have been through.

And I believe as part of icusteps.org, you also have local support groups for ex- ICU Patients and their Families across the UK. I’m sure our listeners would like to know more about those groups. How do you structure those meetup groups and what value do you think people get out of those groups?

Peter: The group really, that was where we started and the website actually followed on as a result from that, but the very reason behind that was really what we already touched upon. It’s that point that, as soon as someone is no longer technically regarded as being critically ill, they can be bounced to anywhere in the hospital and when they get there, no one seems to understand what they’ve been through and what lies ahead for them.

And it’s that isolation from those like us who can help. Just say “oh yes, yes, I have that as well” and just knowing you’re not on your own, can take away so much of the worry and the concern and that’s where the support idea came from. It was about getting Patients back together just so that you can talk to each other, understand each other and share the stories with people that actually understood them.

Patrik: Yes. And I can see a lot of similarities when I read the comments on icusteps.org, I can see a lot of similarities what Patients have gone through in terms of nightmares, six months later they’ve still got depression and you know they look OK to the outside world physiologically, what’s happening inside seems to be very troublesome, worry some and nobody seems to understand them and that’s why I think, you know, what you’re doing there with icusteps.org, building a community of people who have been through the same experience that very few people actually seem to really understand on a basic level, I mean that must be, that must be extremely valuable for those ex ICU Patients

Peter: This certainly and speaking as an ex- Patient myself, I would have to say that I did as well, find it a great relief to feel, to feel that you’re not going mad, I mean that’s an expression that nurses who run follow up will often hear. And that could be one of the difficulties I think there’s still, something of a stigma around mental health issues and if you’re actually going through this, you can be quite reticent to raise it or even admit it, for fear of being classed as being mentally ill.

And it’s a horrible state of affairs to be in. and as I said it’s the, it’s the commonalities of the things that we experience. So once you can start peeling away, these things are actually normal, so the, you know, rigidness of your fingernails, maybe some hair loss, changes to your sense of taste, your sense of smell, muscle weakness, the psychological aspects, the anxiety, the depression, the nightmares, when you can actually peel away all these things that are normal, you will still be left with some things which are just you that are related specifically to the critical illness that you had and why you were in ICU. But when you peeled away all those common things, those, those still very serious issues that you’re left with, seems so much less daunting, because they are not wrapped up in all this other stuff.

And again, you know, being able to talk to people and just help evaporate these concerns away. It’s just, it’s such a simple thing to do, but it makes such a big difference!

Patrik: It sounds like to me like it makes such a big difference and what I can see, you know, what you’re describing there and what I can see form a health professional point of view, obviously being an ICU nurse, I find myself amongst my colleagues like a “Fish in water” and we simply don’t know what we don’t know. One of the challenges and frustrations that I find is that as soon as a Patient leaves Intensive Care, we as ICU staff have no idea what’s happening from there. It would therefore be extremely valuable for Intensive Care professionals to get feedback from ex Patients, in how they went, because then our work would probably feel more complete.

With the feedback, we would also be able to look at our current practices in Intensive Care and how we could improve those practices, in order to have ex- ICU Patients, not only deal with fewer challenges and issues after they’ve gone home, because again, for me it’s mind boggling what, the comments that I read on icusteps.org, because you know, obviously we do our work in Intensive Care, but until I read what’s, what people describe on your website, I really had no idea what people are going through after Intensive Care and I’m sure a lot of ICU professionals have no idea what people describe six months later after their stay in ICU.

Do you think that Intensive Care staff, whether Doctors or Nurses should know more about the challenges ex-ICU Patients are dealing with, in order to improve current practice in ICU? And what are some of the challenges ex-ICU patients are dealing with in particular, once they are at home? And I know you’ve touched on some of them, but maybe you can sort of describe them a bit more vividly or in detail?

Peter: Well, to answer the first part of the question, yes absolutely. There’s a massive appreciation, a universal appreciation I would say amongst ex Patients with gratitude. We understand that the Intensive Care professionals have quite literally saved our lives. If you’re not, if your life isn’t in the balance and you know, you’re not good to be lucky enough to get an Intensive Care bed. So it’s only the very sickest Patients and it’s that amazing job that the ICU professionals, the whole multidisciplinary team do, in turning us around from the brink and bringing us back.

And you’re absolutely right, we, when we’re no longer regarded as being critically ill and we’re on the path to recovery, we’re shipped out to a) another ward, with, if we’re lucky a care plan, which may or may not be fully followed through and implemented.

But as the emergency team, the ICU professionals may not generally see the Patients after that. Depending on whether you have follow up or any other sort of aftercare. I’m sure you will, you will get Patients and their relatives coming back to the unit. I certainly know many, many Patients and relatives who have wanted to go back to say “Thank you”.

But one of the strange differences with Intensive Care is this kind of break in responsibility, with another sort of serious health issues, say if it was cardiac or something along those lines, there seems to be a more consistent pathway and that they’re more acute sections and then more general sections and rehabilitation sections. But Intensive Care seems to a bubble, I mean sort of and as soon as you’re no longer critically ill then that, you loose that continuity of care.

Patrik: It really does.

Peter: So it’s a difficult, it’s a difficult area, particularly given the number of areas that Intensive Care can bring its own difficulties for the Patient going forward, that, they don’t have that access back to the people who understood.

So the experts, they may know, some of them may know the consequences that are followed on, but like you say, if that, that’s one of the things we’re trying to do, highlight those issues and encourage education amongst ICU professionals, on sort of follow on to what can happen from that. But that’s when it’s within a very specific specialism. As soon as you go to the next stage of general ward based care or even a further stage on to general practitioner, you’ve got such a dilution of experience with critically ill Patients, that there is an almost complete lack of understanding of what we’re going through. And that makes the, the recovery and rehabilitation that much harder .

Patrik: And I think what you’re describing there, one of the challenges that I can see is, you know, sort of, because Intensive Care is so specialised and as ICU professionals we tend to be so focused and absorbed in what we are doing, during that critical illness and there’s no excuse for that but I think we simply forget about looking after our Patients after Intensive Care and you know and I don’t know the answer to that issue, but I think, you know, ICUsteps.org is certainly one step to sort of looking after Patients, you know, after their ICU stay, but I do think there needs to come more out of, out of Intensive Care to sort of, you know, I think a lot of ICU professionals are just simply…they don’t know what ex- Patients are going through and it would be eye opening for, for most ICU professionals to, to have a look into that world, you know, sort of what people describe. I think it would change our, it would change our paradigm, hopefully. And a lot of medical and nursing practice in Intensive Care is evidence based and it’s frightening and scary to find reports on your icusteps.org website from ex-ICU Patients, what this evidence based practice is doing to them and the massive issues they are dealing with after they survived their Intensive Care stay.

How do you think ex-ICU Patients need to get involved in changing some of those practices and current clinical paradigms in order to come out better at the other end?

Do you also think that what some ex-ICU Patients report is a form of PTSD or Post-Traumatic- stress disorder?

Peter: Certainly a number of, a notable percentage of recovering ICU Patients will have PTSD and even, even those that aren’t actually exhibiting full blown PTSD will have many, many of them will have symptoms of post-traumatic stress, I’m sure. And of course PTSD can also effect relatives.

Patrik: Absolutely!

Peter: So it’s not just restricted to the Patients. It does seem to me that, that Intensive Care is a comparatively, a comparatively young discipline, compared to other areas of health care and so often it seems that people are just using their, their clinical judgement and their, for lack of better expression, their best guess, as to what can be done and because it is such a delicate moment, that life is in the balance and they’ve just got to do everything that they can and it’s only when they started to turn these around in a more repeatable way that we can start trying to improve things and I think it is happening. Even, even in Southern Europe it’s quite common that Patients, Intensive Care Patients be physically restrained and not sedated, which to me as an ex-Patient seems terrifying. And not surprisingly the evidence showed and Dr Christine Jones who’s one of our trustees now, was involved in a trial that highlighted this and that the practice in Italian hospitals actually had higher incidences of PTSD.

Patrik: Right!

Peter: But the simpler one, the equal but opposite side of that is that the previous practice in sort of northern and western Europe was to sedate Patients, to keep them out of the equation altogether . It made the healthcare professionals life simpler, because they didn’t have to worry about what the Patient was doing or as I did myself- and I put my hand up there- pulling out my lines and my tubes and we thought that it would be better if we didn’t remember this awful time and of course the truth of that is that the deep sedation brings its own specific psychological issues that we have to face.

And the missing time is, was certainly for me was one of the biggest issues that I couldn’t wrap my head around. And even there I mean, things now are starting to improve with things as simple as ICU diaries, as photographs of us in this state that we can’t remember. You know the old adage “a picture tells a thousand words”, it really, it really does!

We’ve still got the whole issues around litigation and consent, but they are really not reasons to not do it. Everything else has been done to us without our consent, because it’s in our best interest.

So, to get back to the question, I think now that we’re getting to a point where increasing numbers of Patients are imagined to survive from conditions that previously they couldn’t have done, we can start, we can start looking at how these things can be improved and I’m very happy to say that I’ve come across a great many Intensive Care health professionals, who believe passionately that this needs to be done and it doesn’t seem to be, certainly my, my experience, like so many other walks of life, where people just go in, they do the hours, they do the job, then they hang up the coat and go home, these people are very, very passionate and I’m convinced that things will get better!

And unfortunately, well, maybe not even unfortunately, but things have to be done on an evidence base. And that means that research has to be done, very difficult to get the nice gold standards of randomised control trials for Intensive Care, so we’re up against it there, but the best evidence possible has to be gathered so we can, we can improve practice and part of that will be recruiting Patients and relatives.

So that’s one of the things that icusteps does as well, is helping in healthcare research where we can.

Patrik: Right! And from what I can see as well Peter, is you know, I mean, the Internet is taking, from my perspective barriers down in many industries, you know, if you will and I think healthcare in a sense is only at the beginning there, I think it’s lacking behind other industries, for a number of reasons.

But I do think that in this day and age, the internet and social media is both on the rise obviously and you know, now we have the opportunity to share those stories online, like you do on your icusteps.org website, it hopefully gives, gives whoever is interested in that topic insight and hopefully it’ll drive change from there really, because you know, as you mentioned, it’s, I think it’s quite important to have ex- Patients and their relatives involved in evidence based care, to sort of change practice and hopefully avoid some of those nightmares that ex-Patients are going through.

Peter: Absolutely

Patrik: And do you think that what I’ve just mentioned with the Internet and social media on the rise, do you think that Patient and Family support inside and outside of Intensive Care is taking on a different sort of trajectory and do you think there is now more transparency and support regarding critical illness in Intensive Care?

And where do you see the future there?

Peter: I think that one, that one for me is a little bit trickier. The, we are such a diverse Patient population, we’re very small Patient population I should say and that means that we’re very widely spread, so the chances of actually just happening across to another Intensive Care Patient is fairly limited, so using online tools, it’s so much easier to get in touch with other people who can, who can understand you.

So, so if you’re not physically near a drop-in session or say an icusteps support group, there’s always the community, there’s always people that you can reach and obviously that is a big, big help.

But as a, in my day job, outside of ICUsteps, I’m actually a web-user- interface developer, so I’m also very much aware that you can, if, whatever you want to search for in the web, you can find something to support the belief that you have, whether it’s right or wrong.

And in medical issues that can be a little bit more concerning, because obviously you need to get honest answers rather than necessarily just finding people who will, will agree with you, but maybe the information is incorrect.

So there’s a little concern there, but that’s where I think the involvement of health care professionals with that, say with the online communities can be a big relief as well.

Again, one of the things we try to make sure let’s say in the drop-ins or in the community, is to suggest possibilities for Patients to take out with their own healthcare team.

Because we can only see one small aspect of what’s being presented, we don’t have access to the case notes or the full medical history. So we can give the benefit of our experience and what other people have said, but it maybe that when that’s applied to the wrong particular cases, it’s not entirely the same.

So this needs to be guided and dealt with, with care.

Patrik: So what you’re basically suggesting is, with, you know, obviously health being the industry it is, a lot of research, evidence based and that sort of stuff, what you’re basically suggesting is, it needs to be put in a framework in order, you know, to not only look at subjective experiences and maybe take them out of context, but keep them within a sort of framework guided by health professionals? Is that sort of what you’re…

Peter: Yes, I think that puts it well. I mean, there is a, if I can go off on a bit of a tangent for a second…

Patrik: Yes!

Peter: There is a very strong driver in healthcare at the moment that you know, “don’t tell the Patient what you’re going to do”. Tell the Patient what the conditions are, give them their healthcare options and let them make a decision.

But I think with critical care, there’s a chap called David Rear, who was a medical sociologist in Israel, wrote a paper back in 2000 on the disappearing voice of the critically ill Patient and he was very much in the camp of “don’t tell Patients what you are going to do, tell them what their options are, what the consequences are and let them decide.” Until he himself was critically ill and he tells of times when he wasn’t told just how ill he was and how he believes that that was crucial in his survival.

So, not, not that he was lied to but, but be in completely honest with people who are that ill can actually potentially have negative effects, which actually went again, again all of his beliefs in his training.

But in Intensive Care that kind of more old fashioned, almost paternalistic style of healthcare can actually still be beneficial. But there’s still a point where that, that approach needs to be dough tailed back into a more considered approach and returning self-determination to the Patient. (34 min)

I mean the other thing you were mentioning about, evidence based and obviously we appreciate with finite resources, evidence base healthcare is understandable. One of the things that we’re very happy to be working on is collaboration with an organisation called the “James Linder Lines” and what the “James Linder lines” do is that they gather information from Patients and their Families, as to what is it that they, as in Patients and Families find the issues to be. What are the areas, where they would like to see research done?

So rather than research just being driven, the research is generally driven by researchers, just based on what the particular person find of interest, actually sort of saying to Patients and relatives, these are the things that matter!

And so that then follows on and then the organisations who provide the funding for the research, start to pay attention and if you want to get your research funded, you have to be seen to be taking on the issues that actually matter to Patients and relatives. So that’s a very positive step for me!

And something that we’re only too happy to assist with.

Patrik: Right, right, that sounds very good! It sounds like there is definitely, sort of, sort of, there are some improvements happening in that area, where obviously Patients and Families are getting more involved, which I think is a great step, I mean and I personally think that there is a lot of room improvement in Intensive Care, to improve Family support and my personal experience has shown that once the Patient’s clinical issues in Intensive Care are under control and managed, it’s all about managing and supporting Families! I also think that Intensive Care teams tend to be extremely good clinicians and experts in their field, however I do feel that most ICU’s don’t offer enough support and communication towards Families of critically ill Patients in Intensive Care! I also believe that ICU’s have a long way to go there, which was one of the main drivers for me to start a support website, that’s specifically aimed at Families of the critically ill.

Because I believe Families are thrown out of their comfort zone in an instant, as soon as their loved one has been admitted to Intensive Care and they often feel helpless and totally out of control. What’s your experience with Family support in particular and do you see any room for improvement there?

Peter: I have to say, I mean obviously, having first- hand experience with critical illness, I don’t have first- hand experience of what it’s like to be a relative. I’m quite happy that’s the case.

But obviously I talk to many relatives over the 10 years that we’ve been going and generally, I don’t know if this is different in the UK, but generally the relative experience hasn’t been too bad. They felt that they have been able to ask questions of the health professional looking after their loved one, the Patient. They have obviously, they have the usual of not wanting to leave the Patient’s side, being worried, there do seem to have been some movements in the past couple of years with relative visiting rights becoming slightly more restricted, but that’s something we assisted the British association of Critical Care Nurses with, in producing their position statement on relative visiting and, and really letting people know that it’s not just about treating the Patient, it’s about treating the whole Family unit!

Patrik: Absolutely!

Peter: So there is, there is work to be done to ensure that that isn’t lost in the overall goal of saving a Patient’s life!

But the other thing that I found worse rather than the Intensive Care experience itself, which seems to be understood and when there’s difficulties the relatives understand why that is. It’s after we leave Intensive Care, to the point that relatives are- the Patient I should say, is assumed to have mental capacity far sooner than what actually in our right mind enable to make decisions for ourselves! So, on the general ward it would be quite possible for relatives to be excluded from consultations, from the decision making process, even from their opinion on the Patient’s mental state. Because after all who is gonna be in a better position to say whether the Patient is acting normally for themselves or not.

Patrik: Absolutely!

Peter: The person who actually knows them!

Patrik: Exactly!

Peter: So of course the general ward staff are almost trained to push the Family back. “You’re just an interested bystander, it’s the Patient that matters”! And then of course, as we know, the length of time it takes to recover from critical illness, both physically and psychologically, who is it, who’s going to have to provide that support when the Patient leaves through the front door of the hospital? It’s the relatives. You know they are proxy, caregivers and if they can actually be excluded from the whole process, even in the general ward stage and then expected to pick up the pieces afterwards, it just is an appalling failing in the whole continuity of care!

Patrik: Absolutely! And one thing that I always sort of say to Families and in Intensive Care, sort of, even though, you know we’re sometimes dealing with very critical situations, where, you know the outcome of our treatment is uncertain. The way I look at Patients often is, you know, I sort of say to the Family, you know, “what do you think?”, I mean, “How has your loved one dealt with adversity in the past?”, you know, “what do you think?”, you know and that goes off the beaten path of evidence base, you know.

I say to them, you know “What do you think? These are the clinical facts and it looks pretty grim, but what do you think? Has your loved one been in a situation like that before? How are they dealing with, you know, adverse events in their lives?” And you know, I sort of think that’s a good indicator in how they might actually come out at the other end.

And again that’s going totally off the evidence base, a lot of clinicians don’t want to hear that sort of stuff, but my experience shows that if a Family comes and says “Look, we want to continue treatment, because our father, mother has come out of this in the past you know, they’ve dealt with cancer 10 years ago and they survived that, we believe he or she will survive that as well and you know, I think, we should listen to those voices, because, you know, they know, what you’ve just said, they know their loved one best! It’s not us the clinicians, it’s the Families who know their Family member best and how they deal with adverse events really.

Peter: Well, it’s an absolutely valid point you have there, I mean some healthcare professionals may not necessarily buy into that straight away, but I haven’t met a health professional yet, who hasn’t agreed with the idea that a positive mental attitude has better outcomes!

Patrik: Absolutely!

Peter: And it’s really just a different point on the same sliding scale in my ideas.

Patrik: Absolutely! And Peter, where and how can people find out more about your website? And can people also help support ICUsteps.org through raising funds?

Peter: Well, you’ve hit the nail on the head there already, it’s ICUsteps.org is the website. We do have a community as well, which can either be accessed through the website or directly at ICUsteps.healthunlocked.com

And in terms of support, it’s not so much financial support that we need, it never really has been. It’s about people getting involved and volunteering their time and their expertise.

The support groups that you’ve mentioned, they are actually all independent groups. They have our name and the members of our organisation, but they tailor their groups to bring in whatever(44:10) works for them on a local level. The groups themselves that’s a whole other topic , but to cut to the chase, it’s a partnership between healthcare professionals and motivated, capable ex-Patients and relatives that can provide that service and whenever we can get that nucleus of health professional and ex-Patients and relatives together, then there’s a chance for a group to start-up!

The more of these groups that we have and that they’re able to feed back into ICUsteps as the national and after recent conferences, including one in Sweden, just this last week, it does seem there is more of a pressure for us to become international, but I’m not quite sure how that would work out…

Patrik: Look, I mean… Yes, sorry, go on.

Peter: I think the care is universal, but as we get more of these groups going and we get a, I mentioned how widely scattered and how small of a Patient population we are, but if we can get more of these individuals involved, then my hope is that we can actually start providing a clearer, stronger, louder voice for Intensive Care Patients, that is representative of all of us!

Patrik: And I mean you’ve just mentioned you know, obviously, it’s becoming more of an international movement already, but I believe your ICUsteps.org is sort of, it’s partly NHS supported or funded, even isn’t it? Like the National Health Service in the UK is definitely involved in that group?

Peter: It’s UK based. We recommend that our support groups are independent of hospitals, simply because that, that expertise isn’t needed. The health professionals have a very valuable and important role to play, but the Patients and relative members of support groups can do a lot of the heavy lifting. As I put in the talk, we don’t need a nursing degree in order to make the coffee.

So in actual fact, from my mind it’s actually being able to go from being the recipient of the care to being someone who is able to help other people is that final part of the journey, from being an ICU Patient, back to being a normal person again!

And I think if it’s something that’s formally attached to the hospital, that really takes the aspect away, it becomes more of a hospital service that you’re helping out with.

And I think it can increase bureaucracy and that sort of thing. That, having been said, links with hospitals are, of course, vital, because they are the providers of the raw material for support groups, the actual ex-ICU Patients and relatives themselves! So it’s kind of, there is a relationship, but it’s hopefully more symbiotic than actually entrenched.

Patrik: Yes. And what you’ve just mentioned, sort of, helping other ex-ICU Patients, do you think that’s helping, sort of Patients who are willing to share their experience and support other ex-ICU Patients, do you think that’s part of a healing process as well?

Peter: Oh, absolutely it is yes! Even being able to verbalise your own story, can help put things into perspective and let you be more at rest with them. But if you can actually end up helping someone else as well, then it just gives purpose to everything you’ve been through!

And that in itself for me was one of the big drivers that makes you feel that it was worth everything you’ve been through, even the more difficult, the hard times, there was a reason for that and you know you’re getting every ounce of goodness out that you can!

Patrik: That’s fantastic! Do you have, Peter do you have any final advice for ex-ICU Patients and their Families?

Peter: Advice? One of the things, we’re trying not to give advice, but what I would say to ex-ICU Patients and their relatives, the number one thing is, you’re not alone! There are other people out there, who have been through things and that they can understand you! The fact that no matter how badly we’ve had to endure, we always find people that are worse off then ourselves and being able to do something to help others is a massive, massive benefit in coming to terms with our own experiences!

And the other thing is, it does seem that although the experience, the consequences of critical illness are universal and I say that because from the contacts we get from around the globe, despite the different healthcare systems it’s so often that the common things just keep cropping up again and again and again. And although we are getting better at, the health professionals getting better at saving people’s lives, we do still seem to be stuck in this rather backward, almost post first world war mentality of, well “we’ve saved your life, what do you want?” and really, rehabilitation is so often seen as, as a fluffy ad-on that’s not necessary, when in actual fact, it’s absolutely crucial in returning Patients back to be normal, productive members of society.

And when so much money, time and effort has been spent on getting us to a point where we’re not, where we’re not expected to die, the relatively cheap treatments and facilities that rehabilitation offer makes such a massive difference. I mean my belief is that they would actually save money.

Patrik: Yes!

Peter: If you actually, sorry, if you were to look at the cost of rehabilitation as compared to the cost of an Intensive Care bed, maybe it’s like adding an extra half day’s Intensive Care bed or day’s Intensive Care bed on to the cost of treatment. But for that cost you get reduced ICU readmission, reduced hospital length of stay, reduced GP visits, you, you get less access to social benefits, because we go back to work sooner and we start paying tax sooner!

Patrik: Absolutely!

Peter: So I’m convinced, I’m absolutely convinced that if you look to the big picture, rehabilitation actually saves money, but unfortunately because it doesn’t come out of the right pots or people are looking after their own particular expense pots and they don’t have a helicopter view or for the big picture, sadly that seems to still be an uphill battle, but we’ll work on that one.

Patrik: Yeah for sure, because I think it’s a big challenge, I think Intensive Care is sort of a very close community and what you’ve just mentioned there, not looking at the bigger picture I think is part of many of the issues within Intensive Care and what you’ve just mentioned there “guilt” that some Patients may even feel, sort of “you know they’ve saved my life, you know I couldn’t ask for more, but as we know, there are a lot of other issues that come up after their ICU stay and we definitely do need a, I think a bigger picture view and see how we can tackle those issues from, from other ankles as well. Because it’s just not as simple as “yeah, we’ve saved your life, you know, now move on”, that’s not, that’s not what happens in the real world.

Peter: No., absolutely not.

Patrik: Well, Peter I really want to thank you for coming on to this interview and you’ve shared some tremendous insights there that I hope our listeners will find valuable and you know if, if they either have been through the experience of being an Intensive Care Patient, I’m sure they can get a lot of insight on ICUsteps.org or if they are a Family member of an Intensive Care Patient, they can find lots of FREE resources at INTENSIVECAREHOTLINE.COM

So again, really thanking you for coming on to this interview and being our guest here!

Peter: Thank you very much Patrik!

Patrik: Oh, you’re most welcome and yeah thank you our listeners to, to listen to this second episode of our INTENSIVECAREHOTLINE.COM interview series and we’d definitely continue this series next month with another special guest and thanks again for listening and good bye Peter in the UK and…

Peter: Good bye Patrik

Patrik: OK, thank you very much! Bye, bye!

Peter: Bye, bye

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Thank you for tuning into this week’s “BLOG” and I’ll see you again in another update next week!

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This is Patrik Hutzel from INTENSIVECAREHOTLINE.COM and I’ll see you again next week with another update!

Sincerely, your Friend
Patrik Hutzel