Welcome to Words Of Sepsis, the podcast from Sepsis Research FEAT to mark Sepsis Awareness Month 2022.

In this episode you'll hear from Craig Stobo, the founding chair of Sepsis Research FEAT and Professor Kenneth Baillie, who leads one of the key research projects funded by the charity.

Craig explains why he set up the charity after his wife and baby daughter died from sepsis and his own experience of contracting sepsis.

Professor Kenneth Baillie offers insight into the GenOMICC study from the Roslin Institute at the University of Edinburgh since 2018.

The research programme is looking into our genes and how they can impact our likelihood to develop a critical illness like sepsis.

Sepsis is a condition that still takes the lives of some 50,000 people in the UK every year.

That's about five lives lost every hour.

Our hope is that through these podcasts, many more people will become aware of sepsis and that some of the loss and suffering related to sepsis can be prevented as you increase your knowledge and the knowledge of others.

Do check out all eight episodes in the series and share them as widely as you can using them to start conversations with friends and family about sepsis.

It could save a life possibly even your own.

If you've been affected by anything you've heard, or you'd like more information about the groundbreaking research into sepsis that the charity funds please do visit our website. www.sepsisresearch.org.uk, where you can also make a donation.

You'll be helping us to save lives today and fund research for tomorrow.

Abi Dawson

Hi, I'm Abi. And I'd like to extend a very warm welcome to these Sepsis Research FEAT, Words Of Sepsis podcasts. Over the course of eight episodes, we'll be talking to sepsis survivors and their families about their experiences of sepsis. Some of the stories you hear may be quite painful, many are uplifting. They are stories of shock, fear, sometimes loss, often courage, but also of hope.

Sepsis is a condition that still takes the lives of some 50,000 people in the UK every year. That's about five lives lost every hour. Our hope is that through these podcasts, many more people will become aware of sepsis and that some of the loss and suffering related to sepsis can be prevented as you increase your knowledge and the knowledge of others.

So do please listen, share these words of sepsis and help to raise awareness and save lives.

In this episode, you'll be hearing from Craig Stobo, who's the founder and chair of Sepsis Research. Feat.

Craig Stobo

Craig Stobo

Unfortunately, things didn't improve after that because although the doctors tried their best to stabilise Fiona throughout the rest of the Saturday and into the early although Sunday morning, she was profoundly ill with septic shock at this point. And every time they gave her a blood transfusion, effectively what was happening was they would give her a blood transfusion, it would stabilise her for a short while and then she was effectively just bleeding out. And they decided to take her into theatre around about midnight on the Saturday going into Sunday. Meantime, I'm going up and down to still receive treatment as well for my condition because originally there wasn't a bed for me so I was in a waiting room. So I was going up and down to the A&E part of the hospital to get treatment. So I went through to see her, I knew she was going in to theatre and throughout the day we'd all been speaking to her, encouraging her, trying to tell her to fight on. And I went down for my treatment and she went down to theatre and unfortunately when I came back up the doctors who treating her were waiting for me and they told me that unfortunately she had arrested in theatre at 1.50am on the Sunday morning.

So within the space of a relatively short space of time I'd almost lost my own life, but fortunately hadn't and I had lost my daughter and I'd lost my wife all as a result of sepsis which I hadn't really heard much about. I was aware of blood poisoning septicemia, but I didn't really know much about sepsis. And what happened the following day was one of the consultants in the hospital on the Sunday came to talk to myself and the family and we were all profound shock at this stage. And he just started to go through some of the numbers that that individual hospital, Fourth Valley, that people who would come in with sepsis and also the numbers who would recover and the number of mortality rates as well and I was absolutely horrified. And essentially there was no Scottish charity at that point to deal with sepsis. So I decided at that point that I would set one up, which is what we proceeded to do. I was fortunate because my background is legal and I also knew a lot of medics. I was able to speak to lawyers to do all the kind of technical stuff and also business people and also all the doctors and we got together a board and that was how we originally set up what was originally known as the Fiona Elizabeth Agnew Trust with those two objectives. One was to raise awareness because awareness of the condition is very low and as it's evidenced by my own case, the quicker you recognise it and diagnose it and get people to hospital, the better the outcomes are. And equally there was a real need for research because I know that Fiona is not the only case where the doctors do everything they can but the existing treatments just simply don't work. They obviously worked for me, but for some people they simply do not work. So one of the big areas of research for the charity that we're trying to fund over the last several years is to find out why that is and that will remain a key focus and ultimately what we hope to do by raising awareness and doing more research to hopefully find new and better treatments and overall improve outcomes for the people who don't have existing good outcomes or bad outcomes.

Abi Dawson

Craig Stobo

First of all, raising awareness, which is an ongoing campaign. We really started from a standing start and amongst the things that we've done, I've been profoundly touched and moved by the sheer number of people who have got together and done fundraising as groups. And we started off doing feats for FEAT and some of the feats that people did were fantastic and they raised a lot of money and they really got behind the charity. And that was the initial critical period where it helped us to establish and then to grow. And we then developed a name, we've changed the name to Sepsis Research FEAT to try and put the focus on research. But, I mean, milestones have been that we did a national awareness campaign with the Scottish government. That was a key milestone because, again, it's just trying to get that message out there for the first time more widely and also just the start of the seed core funding with the University of Edinburgh into looking at potentially genetic differences that may cause different outcomes with people given the same treatment. That I think has been a critical milestone for us as well, but fundamentally, I'm just profoundly grateful for all the people who've got behind the charity, be it professional medics or just ordinary people who, like myself, have lost somebody or a friend that they've lost. And again, I'm always amazed and moved by people's resilience and by their determination to try and do something positive out of something so negative. It's something that I and my friends and the people in the charity have tried to do. And we just took our hats off to everybody who gets behind us because without the people who supported us in the beginning and continue to support us, there would be no charity and we wouldn't be able to do all these things. So we're profoundly grateful for that. And our commitment is to keep on raising awareness, there's still more to be done on that front. And also to keep funding more research until hopefully at some point, it may take some years, but we will get some better treatments and some alternative treatments and we'll have a real impact on the numbers and bring those numbers right down.

Abi Dawson

And where does Craig see the research going and developing in the future?

Craig Stobo

I'm not a research scientist or an expert medic, so this is very much a layperson's answer, but where we see it going, we always envisioned that it would take time because we are looking into the genetic components and what our biggest strand of research, and we will have other strands of research as well. But just as with all types of research, we will make discoveries along the way and like you said, sometimes a negative return can be a positive because you're ruling things out. And we have a good bunch of people, a fantastic bunch of people at the University of Edinburgh who are making great strides towards doing this, just in terms of getting people to sign up so we can actually start on the research. Because of the initial seed core work that we've done in taking samples and setting up the network, the people were actually able to pivot during the COVID pandemic and were able to pivot the research to actually focus on that as well. So that has obviously been something that's been beneficial, in a kind of wider aspect as well. And now, hopefully that we are through the worst of the pandemic, the team can go back to focusing more on sepsis. But that was a good example of an unintended outcome. Nobody was expecting it, but they were able to pivot what they had already done and then scale it up. And that was a real insight into how useful it can be. In terms of the time scale, it may take a very long time. Just as with other types of research, like cancer research, there's no immediate magic, bullet oftentimes but as I always say, you always have to start somewhere. And we've taken the first several steps down the road that we hope will ultimately lead to some fresh discoveries. It could take years, it could even take decades, frankly, or we may get lucky and find something in six months, 12 months, 18 months, and I think one has to be prepared for any eventuality. But the key thing is you've got to start. You have to start doing it. So we've started.

Abi Dawson

Craig says he's feeling positive about the future and what Sepsis Research FEAT wants to achieve over the next five years.

Craig Stobo

We expanded out across the UK now, so although we started off in Scotland, we have started off expanding across the UK. And the focus will continue to be we need to still carry on raising awareness because it is fundamental. And so we will always do that, just as all other medical research charities will do that as well. Cancer research charities raise awareness. But our focus will be to try and scale up as much as we possibly can, more research. And again, this will be across the UK. So if we are contacted about other interesting projects across the UK, then we will back those. What we're effectively trying to do is to place sensible bets on research that we think could ultimately lead to interesting outcomes, useful outcomes, and perhaps different treatments as well. We don't know where they will come from, but we are very much operating now with a UK remit, so the more that we can, effectively, the more money we can raise and the more awareness we can raise and the more research we can fund. Of course, there are other ways if people are financially strapped, as many people will be and are going to be unfortunately, because of the situation that we're in. A lot of people will give us time. We've got our sepsis advocates now as well and that's another way that people can get involved. So we always stress that you don't have to be out there fundraising or donating money. The giving of time is equally as valuable if we're able to get out there. And that's another way that we can spread the message by people being effectively trained up to go out there and actually tell other groups of people about the message and that is something that I've done, other board members have done, our team has done, and we've now got a whole bunch of people who are trained up to do that as well. And it's very important. And often times they will have their own personal stories and reasons for wanting to get involved and it makes it much more relatable. You can talk about statistics and about symptoms and about awareness all you like, but actually, if you just tell the story of, I guess, how simply it can happen, how quickly it can happen, it really cements that in people's minds. And we found that to be very important and relatable. And I think that's another critical component. And the idea being that, again, the more we can spread awareness right across the UK, hopefully the more we can prevent people having bad outcomes. And also ultimately we want to try and raise more money and fund more research right across the UK. Sepsis doesn't really stop at the border, it's a global problem. But we're focused on UK research.

Abi Dawson

One of the key research projects that Sepsis Research FEAT funds is the GenOMICC Study. Professor Kenneth Bailey is the GenOMICC Study's Chief Investigator and a consultant in Critical Care Medicine at the University of Edinburgh. He explains what it's all about.

Professor Kenneth Baillie

Abi Dawson

Professor Baillie says that working with the charity gives his team a real boost.

Professor Kenneth Baillie

Research funding across the whole world really is generally very specific. It's short term, there's an attraction towards low risk projects and what you do with the money is extremely specific from the very outset. Sepsis Research FEAT took a long term vision. They said they wanted to do something that could be transformative. They accepted that it might not work and they gave us the flexibility to use funding as we needed it at the time. And that enabled us to very rapidly extend recruitment across the whole UK for a study that was obviously very high risk and might not yield anything at the time. If the pandemic hadn't hit, we would still be in the situation of saying this could take a decade before we find anything that might be useful. In my world of science funding, that's a really refreshing way and practically a very useful way to have funding. The second is much more important and it is that when we meet Sepsis Research FEAT and the Sepsis survivors and the relatives of people who died of sepsis. My entire lab group, you know groups of scientists and clinicians who are studying the immune system and sepsis and genetics related problems. We all have our feet held to the fire by this extraordinary, compelling group of people whose objective is to find better treatments for this disease. And it stops us getting distracted because of course, we find things that are interesting along the way. Everyone gets into science because they're excited about solving mysteries and there's a great deal of value to solving mysteries for their own sake. But that's not what my lab does. We are entirely focused on picking up the threads that will lead us to or that might lead us to new treatments for sepsis. And so if there are things that might lead us into really interesting new areas of science or biology, we don't follow them, we publish them, we point others in that direction, but we keep our focus on finding new treatments and it's really because of the direct interaction with this extraordinary group of people that we keep that focus.

Abi Dawson

Craig says having the charity has been a real focus for him and his family.

Craig Stobo

I do view myself as fortunate to still be here. So there's an element of, okay, well, I'm going to make the best use of my time that I can and the charity is inherently integral to that. And again, just as I say, there's a real, with myself and the family and all our friends, we were all kind of shopping what happened. There's also a real drive within all of us to try and prevent it happening to other people, other families, because we just know from the numbers, the sheer number of people who are affected every year the number of people who die every year is thousands and thousands. But actually, if you look at the number of people who are then affected by that, all the friends and family of those people who lose their lives far too soon, you're probably into hundreds of thousands, maybe even millions. So it's a serious condition and it needed to be tackled. And so, yes, it has given us a focus. And you hope, one always hopes, that everything you can do will maybe help other people. And I said this at the outset, if we can stop it happening to one other family, it's been worth it. And fortunately, we've been able to do much more than that. But obviously there's still much more to be done and there remains a group of people, a cohort of people, for whom existing treatments just don't appear to work. And we want to understand why that is and to do more about it, to try and cope with new and alternative treatments.

Abi Dawson

And we'll leave the last word for this episode with Craig.

Craig Stobo

Just to say thank you to everybody over the last nine years of the charity who's supported us. Particularly all the folk who have done so many great feats and fundraising and help spread the word. All the medics and all doctors and nurses and public health officials and the people we deal with in government who have been so supportive and who want to ultimately try and improve outcomes for everybody. And the great team who run the charity, they've done a great job steering us through some very, very choppy waters over the last couple of years. And finally, just to my fellow trustees, because, again, they've helped oversee that through very difficult times, lots of Zoom calls, lots of difficult decisions to be made, and just to friends and family as well, for the initial support of getting going. And hopefully, you know, we're always very grateful for any kind of support we can get from people and hopefully people will continue to join and help out right across the UK and we'll try and help out as much as we can back by raising more awareness and funding more research.

Abi Dawson

Craig's story is a hugely powerful one. It's also a testament to one man's resolve to prevent others from going through what he and his family and friends suffered. The work that he and his fellow trustees and the team have done over the last nine years has been phenomenal.

We really hope that listening to this Words Of Sepsis podcast has helped increase your awareness of sepsis. Do check out all eight episodes in the series and share them as widely as you can using them to start conversations with friends and family about sepsis. It could save a life, possibly even your own.

If you've been affected by anything you've heard, or you'd like more information about the groundbreaking research into sepsis that the charity funds please do visit our website. www.sepsisresearch.org.uk, where you can also make a donation.

You'll be helping us to save lives today and fund research for tomorrow.