'Once in a generation' sepsis research project launched
Sepsis is a life threatening condition that occurs when an immune response to an infection turns on the body itself. It can cause damage to vital organs and it kills around 50,000 people in the UK each year alone. Sepsis has been in the headlines recently following a tireless campaign by the parents of a 13-year-old called Martha Mills, who died from the illness in London in 2021. So, what should we know about it, and attempts to tackle it? Will Tingle has been speaking to Jo McPeake from The Healthcare Improvement Studies Institute at the University of Cambridge and Emily Perry who survived sepsis - but is living with its long-term impact...
Emily - I had my second daughter in August 2019. I had an emergency caesarean section and then had to have some emergency surgery afterwards because of a haemorrhage. So I'd obviously had a fairly traumatic few days and you know, was feeling pretty unwell and pretty tired. But I was discharged from the hospital, went home. I kind of continued to feel almost fluey for a few days, a few weeks. But I just put it down to the fact that I'd had, you know, all this surgery, my body had been through a lot. And also I had a newborn and a coming up two year old. So life wasn't exactly relaxing anyway. And then one afternoon, about three weeks after Victoria's birth, I was feeling really unwell and things had gone kind of very downhill quite quickly. My sister was luckily staying with us at the time and I said to her, 'you know, I think something's wrong. I suddenly feel very shivery but uncontrollable shivering.' And my temperature shot up and I was really struggling to speak. My hands and my fingers were starting to go quite numb. I don't remember too much more after that. I remember being taken in to hospital. And then it wasn't really until the day after I was admitted that the diagnosis of sepsis came through. I was in hospital then for the best part of a week. I was given really regular IV antibiotics, paracetamol to keep the fever down. It took a couple of days for the shivering to stop and that was really frightening because I think I hoped that, once I got into hospital, the medication would be an instant fix. But it was a really frightening time wondering if I could care for my baby and if I was going to even survive it. But then after a couple of days, they found the right antibiotics that started to make an impact and I started to feel better. It's not just what happens when you're in hospital, it's those weeks, months, years that follow. I had to have therapy for PTSD and I've had ongoing health anxiety. I think it's very difficult when you've had terrifying and life-threatening things happen to you to have that belief again that things will be okay, and that something else like that won't happen to you. You lose your faith that things will be alright and that these things happen to other people and that's a very hard thing to move on from.
Will - So, Joanne, to try and help those like Emily, the James Lind Alliance is launching this 'once in a generation' survey to ask people with firsthand accounts of sepsis, what they want studies about sepsis to look into. What kinds of questions is this survey going to ask?
Joanne - So the James Lind Alliance is going to be launching a priority setting partnership. And this has really been spearheaded by sepsis researcher FEAT. So this priority setting partnership, and the most important word in that is partnership, aims to identify and prioritise the unanswered questions or kind of the evidence uncertainties that, as a community, they agree are most important. And this is so that we can feed into policy makers and health research funders to make sure that they are aware of the issues that matter most to the people who need to use this research. So people who develop sepsis, family members, clinicians treating them.
Will - What questions are you expecting? What do you think are the hot button issues that people are going to touch on?
Joanne - I think there'll be a whole host and, you know, sepsis has a big journey to it. So there's that initial part of sepsis. How do we recognize it quickly? How do we treat it quickly? There's then the part of the actual treatment itself. What's the right antibiotics to use and how do we identify what are the right antibiotics to use? And then it goes on to recovery. How do we improve outcomes? How can we help people thrive after developing sepsis and actually some of those wider societal issues. So actually how do we support family members as well? How do we help people reintegrate socially? How do we help people get back to work? How do we help people's mental health in the long term? So what I'm really excited about with this is I think there could be right across the continuum of care that we see these research questions coming from.
Will - Emily, if this survey had existed four years prior, how do you think it would have benefitted you? What sort of questions would you have liked to have asked?
Emily - I think it would depend very much on when you asked me. I think as I started to make my recovery, it was the obvious ones of 'why did this happen to me?' What made me susceptible to sepsis and where did it come from? And is there anything I could have done to have prevented it? Was there anything that anybody else could have done to prevent it? But then I'd say now, four years on, almost to the day actually, it's looking back and thinking, well this has been a four year journey and I wouldn't say I'm at the end of it. How could I have been able to help myself in those six months following? The year following? I certainly feel that sepsis robbed me of the first six months with my newborn daughter. And that's something I can never get back. And I was so anxious and so frightened. I felt like I couldn't live in my own skin. And anything that could have helped me to process what had happened and understood what had happened to make a recovery, both physical and mental, would've been so incredibly beneficial. And I hope that this will bring about a situation in the future where mothers such as myself, but also you know, all other patients who suffer from sepsis will have a better journey and a better recovery as a direct result of this survey.
Will - With this survey coming out and national sepsis week starting on September 13th as well as Martha Mills' parents coming out this week and asking for more power to get a second opinion. All of this is putting sepsis into the spotlight, but for a disease that affects so many people, it perhaps doesn't get the coverage that other similar illnesses do. I mean, what needs to be done to address this?
Joanne - So, I think it's just a constant awareness raising. And that sounds, you know, quite vague, but I think it is about education and it's about educating all of society, but actually educating our healthcare professional cohort as well. I think the challenge in around sepsis is that sepsis can often be interlinked with other illnesses. So for example, somebody going for surgery for a certain disease process but then develops sepsis after surgery so it becomes mixed up with other illnesses. And so I think that's probably why there's kind of less awareness of it. But I think it is about raising awareness at a local level about education. Young people need to know the signs and symptoms of sepsis because the reality is if we can catch sepsis early, we can improve outcomes because people get treatment quicker. And actually the process that can often lead to death can be prevented. So I think it is about education and I think it is about raising awareness of sepsis.
Emily - Yeah, I agree. I think that there's obviously so many different groups of people that are at high risk for sepsis. You know, they're, they're very young, they're very old people who've recently had surgery, new mothers. I think it's about identifying those groups and how to reach those groups. You know, I certainly think that there have been lots of mums I've spoken to who just had no idea that they were at higher risk from sepsis, from having a caesarean or from just giving birth. And it's having that information available, making people know the symptoms and you know, finding a way to reach those groups individually I think is really important.