Cynulliad Cenedlaethol Cymru

Yes, Chair. I'd like to announce that I'm the chair of the cross-party group on sepsis and that Terence Canning in his role as UK Sepsis Trust provides a secretariat, and also that I am a sepsis survivor. 

Good morning. It was six years ago now that I was admitted to the Royal Gwent Hospital for a routine procedure, for a prostate biopsy. I've got no recollection of that, I may say, because I lost 10 days of my memory. I returned home and, during the course of the evening, I felt unwell. My wife, obviously, was concerned how I was. Anyway, during the night, I got worse. In the morning, my speech had become slurred and I was anxious, et cetera, et cetera. My wife had contacted the urology department at the hospital. It was suggested to her that I be taken back to the hospital, by my wife. This proved impossible because, in a very short space of time, I had deteriorated rapidly.

Thankfully, my wife rang 999 rather than the GP surgery and I was rushed into hospital. I think this was at 12 o'clock. My wife may be able to correct this. I'm reliant for everything on my wife to update me, but I think it was about 12 o'clock that I went in. Obviously, they updated what had happened the previous day. I had no intravenous antibiotics or anything, I was kept there waiting for an update from the Royal Gwent to Nevill Hall, and four hours later—thankfully, whist still in A&E—I had a cardiac arrest. Obviously, my family were in attendance. My heart had stopped for 28 minutes, but thankfully, due to the expertise of the consultant and the medical staff there, they saved me. I transferred to the intensive care unit, where my family had been told that it was a very slim chance of me surviving, and—

John remained in intensive care. That first evening, we were told that he wasn't going to survive because all his organs had closed down. They thought it was to do with the heart; nothing was mentioned of sepsis to me at that point. He was put into an induced coma. He remained in that for a good few days. It was only days, days later that I was told that he'd gone into septic shock. He stayed in hospital for four weeks. His condition was he had very little speech, he couldn't walk—if he did, he could only do it with a zimmer—his kidneys and everything had failed. One way of putting it was, everything needed to be rebooted; it's like if your computer had been switched off. Your body closes down, apparently, with sepsis. The non-important organs go first, and it ends up the heart goes. So, that's just a generalisation of it.

But moving on, after four weeks, John was told I could take him home. But I was not told that sepsis was going to be a long journey or that we needed help. John was just discharged with no out-patient appointment. I wasn't told to go to a GP. Nothing. I was just told to take him home. And that was the start of John's sepsis journey, really, because whilst in hospital he was cared for. Nobody asked where I lived, nobody asked whether there were any steps—which you are asked if you have a stroke or other illnesses—there was nothing. On his return home—I don't know if you want to get back in and say how you felt.

I can remember going home and being so grateful that I was in a position to return home, because I honestly felt on my return, with good care from my wife and my family, good food, I'd have a speedy recovery. I thought, if you have surgery or an illness, you get over it quickly. Nothing could have been further from the truth. I had to go to an international normalised ratio clinic, but I obviously physically couldn't make it. So, I had district nurses for four weeks at home.

That was only after I got the GP out.

Yes, that was the perseverance of my wife, because obviously I had difficulty in speaking. If I started a sentence, I couldn't complete it. I didn't know what I was talking about. It was quite a shock to me that I'd never heard of sepsis. I know I'm talking six years ago, and I hope that things have altered since then; that when people are discharged from hospital, that it's explained to them what the journey is likely to be. I didn't have that.

But I was devastated that I couldn't speak properly, I couldn't eat, my muscle wastage, I'd lost three stone in weight, my hair was falling out—everything. I thought, 'Why is this from an infection?' But there was nothing available for me. My wife had, obviously, been in contact then with UK Sepsis Trust, and I remember months later speaking to Terence and I had some idea of how serious the condition was. But still, it was a long and arduous journey.

The support that I had from the NHS was diabolical, because there is no referral clinic—or there wasn't at that time—where you had sepsis and you were referred to a clinic where they could address all the issues: problems with your speech, problems with your hearing, joint movement, psychological. And, obviously, your mobility. I wanted my mobility to improve, and this wasn't happening. I think it took me eight months—which is disgraceful—to get my first physiotherapy appointment, and that was only because of the perseverance of my wife.

The physiotherapy that I received—I think I'd still be going back and fore there today if it had been maintained at that low intensity, because I used more effort to get up the steps of the hospital and into the physiotherapy department than what I was receiving. I'm so thankful that, due to my previous occupation—I was police officer for 30 years—I was told by an ex colleague of mine that I was entitled to go to the national police rehabilitation centre up in Goring-on-Thames. I went there for intensive physiotherapy and also, thankfully, counselling. That was my first major step on my recovery from sepsis. When I came home, actually, I didn't go back to the NHS for physiotherapy, I saw a personal trainer who gave me assistance in my mobility. But it's been a long, hard road. It must have taken me two years, I think, to finally realise, 'Yes, there is light at the end of the tunnel.' 

I think what's really, really required is that there has to be support there for sepsis survivors, because I know I'd had a cardiac arrest, but if there had been major problems with my heart, if there was surgery or orthopaedics, you'd have rehabilitation. Unfortunately, the health service seriously lets down sepsis survivors, because that is what is required, the input from the NHS to get these patients back on the road to recovery. Because before I was ill, although I was retired, I was active. It absolutely destroyed me. I think it's affecting me now because, even six years on—like I was talking to you earlier on—you do get emotional.

I thank the NHS for saving my life. When you go through that door, nobody questions cost. Nobody asks you if you've got an insurance policy. They save your life, and that's their main goal. And I thank them; I'm eternally grateful to them for that. However, when you go through the exit doors, home for your recovery, the support is practically zero. It has to change because that has a knock-on effect. The cost, if I'd been working, the cost of losing your job, you couldn't pay your mortgage, is huge. It must cost billions of pounds nationally.

Can I just come in there a minute? I think, as well, it's raising awareness with GPs, district nurses, health professionals. They know what sepsis is maybe now, but I do not think people are aware of the post journey and how long that lasts. Because you could take John to a GP and they'll say, 'That was a year ago'. Yes, but it's still—. We're not making this up. Emotionally, psychologically, it affects John, it affects his family members as well. But wherever you go, whichever specialist we see, we have, 'That was a long time ago.' No. I think that's the message we need to get across: sepsis survivors need help, not for six weeks, as if you've broken a bone, it's for maybe six years. And, as well as medical professionals, I think it's time occupational therapists and employers are made aware of it. Because although he looks fine—and I used to say it myself, 'He's looking so much better now'—he's not. It goes deeper. It is a psychological problem as well.

Well, in view of that, and I appreciate the stress of giving evidence, we'll call a halt there for the time being, because there are some more questions to follow, which you'll be involved in. And I can feel some recommendations coming on now, actually, from what you've just said. So, thank you very much indeed for that. We're coming to some more detailed questions that are obviously going to involve Terence there, who's been very patient. 

Happy to be patient.

[Inaudible.]

You can ask one question and then we'll go to Rhun.

Just one short question. We talked of the surviving and the role afterwards. You mentioned that you'd had a cardiac arrest. When did they first identify sepsis as a condition? Because I think that's what's most interesting to me as well.

About three days into intensive care. When he went into intensive care, I think they were working, thinking he'd had a heart attack or there was something wrong with the heart—not an infection.

So, it wasn't the first thought in their minds.

No. But you've got to bear in mind, when you go into intensive care, they are pumping—. They were trying to save his life. I don't know, because I was in the relatives' room, I wasn't—

Were you also aware of the speed with which sepsis has to be treated as well?

No.

I think one of the problems that there are, and this links to my own brother's story, is that, often, they are being treated for a heart attack, and John won't mind me saying this—it's quite a common pathway for people who are seriously ill with septic shock. It happens to most people—most people that die, it's the heart attack that gets them in the end, which is what happened to my brother. So, as a follow-up, when his treatment started, he was being treated for a potential gallbladder gallstone issue until his heart attack, so his sepsis treatment started post cardiac arrest, which I'm sure everybody would agree would be far too late.

But there's a lot going on and lots of competing parties when someone is unwell. Sometimes the treatment does start too late; treatment after a heart attack. The survival rate for heart attacks is already very low. If you're in septic shock as well, it gets even lower, and John won't mind me saying that he's a very lucky man to be sat here today, giving his evidence. I'm glad he can be here and I just want to say now myself, while I have the opportunity, we're all very, very glad to be here as part of this process, and being given the opportunity to bring the outside world into this arena, so we thank you for that.

We'll move on to some formal questions. Rhun.

Again, thank you for speaking so openly about your experience. Mr Canning, the fact that you're here now is a symptom of the fact that we are learning more, we are getting a clearer picture of what's happening with sepsis, but can you give us an overview about what we know about the levels of incidence of sepsis in Wales currently? And perhaps you'd like to comment on the quality of data that we have, because there are some concerns about what is coded where, and then—. Do we really know what's happening?

I think it's impossible to talk about the levels without accepting that the data isn't brilliant. The way data is collected and recorded, not just in Wales, across the UK, is not great. Robust and reliable data is hard to come by. It needs looking at, and I'm sure through this process and through the consultation papers, that's going to be a huge focus, but with the data that we do have, you can say on examining hospital episode statistics across the UK—which is what the UK Sepsis Trust has done, and it has been backed up by a recent—very recent, actually—global report on sepsis, which has only just been released, which I don't have here, but it will be available—we can say with some confidence that across the UK, there are probably—I'll break this down into Welsh statistics in a second—234,000 hospital admissions across the UK with approximately 48,000 deaths. So, for Wales, that equates to 10,500 instances, with approximately 2,200 deaths, 3,500 life-changing effects of sepsis, and 25,000 children's cases across the UK each year, which is about 1,100 for Wales. So, to give some context to that, for cancer in the UK each year: for bowel cancer, 15,903 in the UK—722 deaths for cancer in Wales; 520 for breast cancer in Wales; 512 for prostate cancer in Wales. That is a total of 1,754. And we think—again, difficult with the data—that around 20 to 24 per cent is the mortality rate in Wales at the moment, which is quite consistent with the rest of the UK, so although this is a UK and global problem, our focus here is in Wales, and we should take this opportunity to do something really, really special with this.

Where are the weaknesses in data collection?

You'd probably have to ask your health boards for this, but I think the way the data—. There's no consistency in how data is recorded and collated, so some people might do it from notes, some people might do it from electronic systems. So, the data that's being sent into Welsh Government—you have to question how robust it is. For example, in one of the consultations—and I know the Royal College of Nursing have flagged this up—somebody's reporting 100 per cent compliance, but it doesn't say what that relates to, so if you're looking at one patient, and you get it right, you're at 100 per cent. They can't have just had one patient when they filed their report, so there has to be an element of nonsense there. If there are 40 patients, that's not 100 per cent compliance, so we need to understand the data. I don't blame health boards. I don't think they know how to report it properly, and they don't have the facilities to do that. So, there are lots of inconsistencies. It's very difficult to take a standardised approach to data when everybody's providing it in a different way.

So, finding that model of standardisation is important.

Well, yes. However bad your data is, if you're all collecting in the same way, at least you can understand that data. If everybody's collecting in different ways, you can't do that. So, a standardised way of collecting and reporting data around sepsis I think would be essential as a first step.

And what kind of data? I mean, the top-level stuff—how many people have been diagnosed with it and how many people lose their lives? What are the levels of data that might be important here—how quickly it was diagnosed, for example, or when it was diagnosed?

I think all of the above, and you have to look at this in terms of mortality. It's very easy, often, to say what someone has died of. So, the mortality data—and it'll get better with the registry when it comes out, and they are doing that in England as well. So, saying how many people have died from sepsis because of how that's now being coded is relatively good. But capturing somebody like John, who didn't know he had sepsis until a long time after, is very, very poor. So, for someone in intensive care where, obviously, the data is very, very robust, they're very, very strong probably telling you what's wrong with people and what they've died of, but what we don't or can't do is track the survivors. So, the data around, actually, incidents of sepsis within a hospital, and not just in critical care, and not just with mortality—there's a massive gap there. How can we help sepsis survivors if we don't know who they are?

Angela first and then David.

Just a really quick one. Of course, a significant number of people who have sepsis do not end up in ICU, so they're either on ward or in care home, and I wonder if you just want to make a comment on the data collection in those areas.

Again, they're the experts on this, but anecdotally, it's poor. There's no point saying here and having a discussion about great data—we don't have great data. It's poor across the board, and one of the major issues around not being able to understand the scale of the problem of sepsis is we don't have the data to tell us the true scale. People were saying to me a while ago, 'Sepsis has gone through the roof—there are now 50,000 cases a year in the UK.' There wasn't, they just changed the coding and did it better. So, they didn't get a new figure, you got a true figure. And when you have the true figure, you know what you're fighting, otherwise you're just guessing, and you can't afford to guess with something as serious as this. You need to know. If you're going to make decisions, you need to know the scale of the problem.

Okay. David and then back to—[Inaudible.]

The same thing on data collection, what's important to me is how we actually identify who are actually suffering with sepsis. And I've got two cases—one family member who had prostate cancer, had a urinary infection in hospital, whilst in hospital contracted sepsis, survived sepsis, lived for a few years afterwards. But, obviously, we don't know whether the sepsis and the consequences had an impact upon the length of life afterwards. So, it's that type of data collecting so you know the number of people who are actually treated for sepsis at some point during their condition.

And the second one, again, is another very good friend who has recently passed away—went into hospital with a condition, and who was in ICU, during that time in ICU had sepsis, was treated, but then passed away because of another condition. How are those types of data recorded to ensure that the incidence of sepsis is reflected upon the cases?

Again, I'm coming back to the same thing. Unless somebody mentions sepsis in that person's notes, you would not know. So, you have to have a clear diagnosis of sepsis that is then recorded and written up. So, John, for example, could well have been discharged with a cardiac arrest, but fortunately, in his notes, sepsis was written up. Unless it's in your notes and you're being diagnosed and discharged back to your GP in the community, being told that you have had sepsis, you're not bound to know about it. And those people are walking around—people are coming to our support groups and they didn't know they had sepsis up until maybe four weeks, five weeks after their discharge.

So, the collection around sepsis generally is poor, and whatever I'm asked about data today, I'm afraid my response is going to be that it's so poor, and I'm not going to be the only person who sits here and says that. Everybody in the health boards are going to be saying, 'We wish we had better ways of, firstly, collecting data and then getting the feedback on it so we can improve.' This is about improvement; we're here to improve things. You can only improve things if you recognise the scale of the problem. But the short answer is there are numerous people walking around in communities who often don't realise they've had sepsis until they go back to the GP or they hear somebody else say, 'That's what I had.' So, there's a massive gap around the collection of data for people who are outside of the intensive care units.

I can feel another recommendation coming on. Rhun, are you—?

We heard the First Minister Mark Drakeford saying in a full Senedd meeting last month that he believed Wales was leading the way on sepsis within the UK. Could you comment on that claim and expand a little bit as to how Wales does compare, in your view, with other UK nations?

If I'm being honest, I'm not sure what that quote relates to, but what I can say is that, historically, Wales certainly were leading the way. We've won awards from Global Sepsis Alliance to prove that, and we do okay, but the Global Sepsis Alliance award was a good few years ago. I think the mortality rate success was from statistics from five years ago, so I don't know how people know this stuff. I hope it's true and I'd be very happy to champion it if it was, but I'm not as sure that we are as at the forefront of things now as we have been previously. I think other countries have caught up. Scotland are doing well and so are England. So, we've stagnated a bit, I think.

I'll just read a few more of the First Minister's words, just in case that gives a bit more context:

'I should just make it clear that sepsis numbers in Wales are falling...that is because of some really groundbreaking work that has been done by clinicians here in Wales, led by some very far-sighted and committed clinicians, who have developed the early-warning signs system that we have for sepsis here in Wales'.

He goes on:

'I think we can genuinely claim that we have been in front of this debate in Wales, and that's why the figures in Wales have been falling.'

I agree we've been at the front of the debate, and I am a massive fan of the national early warning score. It is a common language and it will make a huge difference. But I would dispute that you would quickly be able to demonstrate that the rate has gone down, because I would think that, with better definition and recognition, it would probably slightly go up at the start. I would expect that—I don't know, because, again, there are no statistics around that. I would expect to see a spike before the improvement, because you should be finding more cases if you're improving your recognition, but, again I don't know the—. We're coming back to the same old point: there's no accurate data to pin those statements on, and I don't have that either.

But, yes, Wales has been very good. We're right up there. I think if we're going to be leaders, we have to do something to prove that we're leading. We can all sit around, England, Wales, Scotland, saying we're leading, but we have to demonstrate it. We have to do something to demonstrate that we are doing more than England or Scotland, and say, 'Actually, we're better than you at this, because we're doing this and you're not.' It's those bold things that will make the difference, because I can say I'm excellent at my job, but someone can say, 'Prove it to me.' Hang on a minute, I'm not sure, how do I prove that? We need to be able to say, 'We are better, because yours is 20 per cent mortality, and ours is 15.' We don't have that data, which is the issue we've got. We need to say, 'We have support for survivors, you don't have that. We're supporting our survivors.' That's what we need to do—put the things in place to say, 'Yes, we are the best and this is why.'

We can't talk about it forever, we have to move the conversation forward, and that's why we're so pleased to be here, but we can't live off former glories. We have to say, 'We've listened, we've acted. This is what we're doing now.'

So, saying numbers are falling in Wales doesn't really do it for you.

Well, it doesn't do it for me, because I need it demonstrated to me with cold hard facts. I'm not saying anyone is wrong, but you have to be able to prove that you are better than somebody else. I have to be able to prove that I'm good at what I do. Everybody here has to be able to prove they're good at what they do. You can't just say, 'We're good at it.' You have to prove it with good hard facts, otherwise it's too easy to challenge, because if you get challenged and you don't have a definitive response, then it's questionable. So, we need to put ourselves in positions where we're not so easy to challenge. Because if I went to England tomorrow and said, 'We're brilliant in Wales because we do this, this and this', somebody would dig into the archives, dig into Google or whatever and say, 'I can't find anything that suggests that beyond what you've just said.' It's so easy to do these days. They'd be disproven. So, I don't make bold, sweeping statements about improvement if I can't back them up.

Diolch. Thank you.

Diolch, Gadeirydd. I suppose it's back to this question of—you talk about data, it's awareness that you mentioned, as well, earlier. I don't want to go into the awareness of professions at the moment and post survival, because I know colleagues will have questions on that. You've identified that an awareness campaign is required. Now, clearly, in the more recent years, we've seen greater awareness in the news of sepsis, but how can we actually create that greater awareness? Is it a campaign? Is that the real solution?

I come in here to represent the public. And everybody who's a member of the public who's affected by sepsis is screaming for a campaign, and I understand that. I totally do understand that. If John had known more about sepsis—. I've got countless examples of where awareness would have worked, within a certain demographic—that could have probably saved their life, or given a better outcome from their survival, their aptitudes, et cetera. Awareness is a huge thing.

I'm also very conscious of the fact of how difficult this is to do. So, I'm not going to say, 'What you do is hang something up off the Severn bridge saying, "Think about sepsis".' That's irresponsible. What you need to do—. Because there's a huge problem around the worried well, et cetera, we need to do something that targets the unworried unwell, that kind of thing—a very sensible, sensitive campaign with the public that doesn't send people flooding to A&E because you've given them such basic information that they cough and they think they're really unwell, but gives them a chance to make informed decisions about their health. That includes the person, the advocate for that person, the first person that person—. So, let me give you an example of a chain. I'm sick in the community, and, five years ago, I don't know what to do, so I do nothing. So, five years ago, I get worse and worse and worse, I seek healthcare, like my brother did, it's too late—my clock started ticking four days ago and I've started now. What you want to happen is the person in the community—. Because this is a chain from community to Cabinet and everything in between. So, the person in the community thinks, 'I feel unwell'. Not unwell as in, 'I've got a bug like I had last week', or 'My son's come down with a bug I had last week'—this is unusually unwell. I know this person—. We're experts on ourselves and the people that are close to us. I know this person, and something with this person is wrong. What could it be apart from the ordinary? That's when you start thinking about things like sepsis, and, when you think that in the community, you go to the next, first person. Now that could be the pharmacist or the GP, depending on how sick this person is, and then that person needs to know. You could present and say, 'My mother'—I use her as an example—'she never sees doctors, but she's confused, she's unwell, this is not normal for her. Could it be sepsis? She hasn't been to toilet.' So, these basic things you can tell members of the public that they can use when they're presenting to healthcare, to health professionals, to inform their diagnosis and decisions—. My brother was in A&E for a good number of hours, and I didn't realise—. And he was confused; I didn't know the significance of that. I didn't know he probably hadn't been to toilet for a day or two. I didn't know to ask. If I'd known that, I would have asked both things. I would have said, 'Confusion relates to infection'; I didn't know that. People in the community need to know that. They need to know the importance of somebody being sick for three or four days isn't normal. And then from you up is key. So, you go from the community to your first person, whether it's the pharmacist who says, 'Okay, I can escalate up. I'm not an expert but I can escalate up. Go to your GP'. The receptionist can do that. If the receptionist is educated, she can say, 'This person looks really, really unwell'. So, you go from community to first primary care—GP, pharmacist, whatever—they recognise something and they escalate to A&E. You pre-alert, so everybody knows.

So, we started educating in A&E. Now, if I'm sat in the community and I don't know I'm unwell, they could be brilliant, but I'm sat at home, so they can't help me. So, we need to be part of the decision-making process, right the way through the line. I'm unwell, I flag it up. The person I flag it up to thinks, 'Okay, this is serious. I'm going to tell my GP'. The GP thinks, 'Yes, I'm going to tell A&E'. Get these guys in quickly. The biggest thing around sepsis is time. Because people don't have the information to act quickly enough, they have bad outcomes. So, it's very sensitive information sharing. I don't think we give the public enough credit for what they can do with information, and, in Scotland, one of the reasons they had their campaign was because somebody said publicly—ill advised—that they don't want to give the public too much information because it's too dangerous. I disagree with that.

Okay. David.

I think that's very interesting, because there are two audiences, effectively. There's the public audience; there's also the professional audience, when you reach that point. But Public Health Wales seem to have indicated that they're resisting such a campaign, and I think they've said—quoting—it's

'extremely difficult to maintain the delicate balance between "spreading the message" to the public and possibly increasing demand on General Practice and Emergency Departments with those concerned.'

Now, what you've just said, really, is to an extent a rebuttal of that argument.

Well, I'm not rebutting that particular argument, because I hadn't heard it before I was asked the question, but what I'm saying is that I think the worried well, et cetera, would be—. They're not sepsis specific. Any illness has a worried well. You could have a bad arm and think you're having a heart attack, or indigestion and think you're having a heart attack. I think that's something that's part of any health condition when you're considering campaigns, but it needs to be mitigated. If you look at the stroke campaign, I'm sure there were plenty of people that saw the FAST campaign that said, 'I'm having a stroke', but they weren't. But the important thing is that people who said, 'I'm having a stroke', and they were, were seen very, very quickly. And it's like who do you focus on the most—the worried well or the unworried unwell? Because they're the ones that die in communities—it's the unworried unwell, because they don't have the information. The FAST campaign was very, very successful. I know that Welsh Government have said that. And the public campaign was part of that. It reduced strokes. Actually, it didn't reduce strokes; it gave better outcomes from strokes. Because people still have strokes; they just survive them better.

Can I ask you then, again—? Because the Minister has responded to a petition in relation to this and indicated that, whilst recognising 

'the importance of raising public awareness of the dangers of sepsis...it is...important to strike the right balance with messages about the appropriate use of antibiotics and the risk of creating public anxiety.'

Do you have any sympathy with that type of message, because it seems to indicate that there's an expectation that you would expect an antibiotic straight away as a consequence of just simply being aware of the symptoms? 

Everybody is aware of the issue of antimicrobial resistance. It's a huge, huge argument across healthcare. Again, this isn't sepsis specific. The difference with sepsis within this argument is that you only can get sepsis if you have an infection, and, in the vast majority of cases, the treatment for that infection is antibiotics. So, on the one hand—. You can't say, 'You shouldn't give antibiotics because it's ruining resistance'; if you don't give this guy antibiotics, he's in serious trouble. So, I am sympathetic with the argument but the treatment of sepsis is antibiotics. So, it's—. If you identify quickly and diagnose quickly and treat quickly, and this is all done with the right screening tools and you introduce reviews, then it shouldn't result in a massive over-giving of antibiotics. Maybe at the start—. I know there's a study in England. They have the CQUIN, commissioning for quality and innovation, thing up there, which is basically—. I learnt what CQUIN is; it's like a financial incentive to deliver antibiotics within an hour, because what it was—. The CQUIN was—if you're suspected of having sepsis, you have to deliver antibiotics within an hour and they hold back money, and you get funding, et cetera, et cetera. I don't like financial arguments around things, but that's what it was. When they studied it afterwards, with a similar kind of argument, across the period of the CQUIN over the hospitals, the increase in antibiotics overall was 1 per cent. It may have been a bit front-loaded, but it was 1 per cent overall; it wasn't huge. I think there's sometimes a bit of a misconception around this massive over-introduction of antibiotics that aren't necessary. We don't know if that's true or not. 

I understand it, but the message for—. It's very dangerous to give people the message to stay away from antibiotics if they have infections and they need them. So, I think it's a broad—. This is the health professionals' argument. And the other thing to consider is, if someone goes into hospital with suspected sepsis and they're given early antibiotics, like an eight-day course, it doesn't have to last for eight days. You get a senior clinician to review that within five or six hours and they say, 'Actually, on review, we don't think this person does have sepsis. He's very sick or she's very sick, but it's not sepsis', they will stop them. They're not going to say, 'Have eight antibiotics; you don't need them, but take them anyway'. With proper reviews, that won't happen.

I think we need to have a very responsible approach to this and look at the detail of what is actually happening, rather than the headlines of it. Yes, there's going to be anxiety around it, but what's the trade-off? Is it worth giving somebody that's potentially seriously ill one dose of antibiotics? Is that better than not doing it because you don't want to affect antimicrobial resistance.

Okay. Joy wants to say something. You can come back then. 

I think the argument against giving and not giving antibiotics—if you go to a GP now and you've got a water infection, they give you a course of antibiotics when they send your sample off. Then you get a phone call from the doctor saying, 'You don't need those antibiotics', you stop taking them. Surely, that could be the same sort of thing with sepsis, if somebody's got an infection. If you're showing that you're not weeing or you've got a high temperature, start the antibiotics. If then when the blood tests or something comes back and it's proved you haven't got sepsis, stop taking them.  

David.

Yes. I just want to close with a last question. Listening to those types of messages, then, are you disappointed to hear that type of message as a justification as to why there isn't a campaign, public awareness campaign, being proposed by Public Health Wales? 

I'm of course disappointed, because obviously one of the key things we want from a process like this would be some kind of campaign. Because I'm a big—. I know the importance of awareness, and I can exemplify that, et cetera. I understand what they're saying, but I don't think you should just stop there; I think you should examine it further. I think you should look at it and say, 'Okay, it is a possibility that this will happen'. We've never had a sepsis campaign. We don't know that's going to happen, and there have been other campaigns where I'm sure they had questions before these campaigns that they weren't sure of, but you mitigate and you see how you go. I don't think you should—. Given the scale of this problem, I don't think you should always put obstacles in the way of doing something. This is one of my frustrations—there are always reasons to not do something rather than to focus on, 'How can we mitigate and actually do that thing? Is there another way of doing it?' And this is—. Again, I'm not a clinician, but, from my perspective and my opinion, I think we can overly focus sometimes on reasons not to do something rather than focusing on the reasons why perhaps we should do something.

Fine. We're having this review to alter that. John. And then we'll come to Angela.

Yes. Just picking up on the public awareness campaign, it sounds to me that in Wales we haven't got that, because my daughter lives in Avon and Somerset, and on the sides of ambulances you see all the symptoms for sepsis. You go to the doctor's surgery—her doctor's surgery—you've got the awareness of sepsis. Here in Wales we haven't got that. So, has that caused a stampede in the health boards that have got those campaigns in England? Perhaps you need to do data on that and see what the percentage increase was.

But it saddens me, six years since I was unfortunate enough to have this illness, I still read in the media of—. I won't mention names and that, because it wouldn't be appropriate, but one identical case to mine was in the media—I think it was in the last fortnight. In the local hospital, prostate biopsy—a chap that wasn't highlighted as a possible sepsis case and died in intensive care.

I think the health professionals ought to be ashamed of themselves when they're letting people down on that standard, because, surely, the health professionals now should be grasping the nettle. Cardiac arrest—you're seen within an hour, or the target's an hour. The same if you have a stroke. It's not happening with sepsis. People aren't being seen within that golden hour, and this is why we're losing people.

I go to my GP—it's frustrating. I was there last week. You see leaflets—if you're over 65 you can have your nails cut and all this done. Not one iota of information on sepsis, and a lot of elderly people go there with ailments that lead to sepsis, and that's why people are dying. I would like to see the data from England analysed by the Welsh Government to see if it has caused a stampede in those various health authorities.

Fine. That may well be a recommendation as well. 

Can I just make one point?

A brief point then, because we've get to move on as well.

It's only because—. Obviously, we're so focused on things not going well; I also want to give you an example of when things do go well, because this is what we're fighting for. So, there's a case study, which I put into the notes, by a guy called Matthew. So, Matthew had a prostate biopsy. And it's the inconsistency of this that's frustrating. He had a biopsy, and he was told, on discharge, 'You may have an infection post-biopsy, and this is what it looks like; this is what it feels like. If that happens to you, do something. Do this, do this, do this.' That's safety-netting. So, back in the community Matthew realises he's unwell. He remembers the safety-netting advice, and his wife thinks, 'You are unwell—let's hear the GP.' Patient awareness. That's community awareness and timely action. He goes into the surgery. The receptionist knows him from previously and she recognised this is not usual for this person—he's unusually unwell. She escalates it to the GP, who also realises Matthew is unwell, knows he's had a biopsy, knows he could have infection and know he's a sepsis risk. Therefore, they ring the University Hospital of Wales, they pre-alert, he's taken in. He's given intravenous antibiotics within 30 minutes—quick diagnosis, quick treatment, and he leaves after four days, and apart from a bad shoulder and a few bits and bobs, he's otherwise well. So, that's when it works well. But it's so inconsistent. Why is it so good in that situation, and so bad in that situation? So, I don't want to always come in here and say, 'Everybody's rubbish'—that's not what we're saying. When it works well, it works really, really well. We need to get to a point where it works that well more often.

Great. Angela, some of your questions have been addressed, I think.

Yes, absolutely. I'll gallop through these. So, we've talked a lot about the hospital setting and the acute setting, and I'm sure we can come onto rapid response for acute illness learning sets and so on, but, actually, I really want to ask: do you think that the awareness in the community, within GPs, care homes et cetera, so the professionals who work in the community, is as good as those in acute hospitals? And would you like to make just a brief comment, perhaps, on whether or not you think that those who work the triage system within hospitals are really as sepsis aware as they could be?

In the communities, I would say that it isn't. I don't think that enough training is being received in those areas, and often, even if it has been, they don't have the—. I know that NEWS is being rolled out in terms of the community, which will make a difference, but often nurses in the community might not even know or have the facilities to take a temperature or blood pressure properly. So, there's a resource issue around that. So, the short answer—community nursing, I think it's quite low, the awareness and the training around it. GP surgeries, I did read their submission, and I think the way they paint the picture is different to how it actually is, because I go into GP surgeries and do talks, and they are very, very engaged. They're very happy to put a message up on a digital screen. But I think what's been submitted by the Royal College of General Practitioners doesn't reflect the real situation.

I think in the—. What was it? Was it A&E?

The triage—before you even get into the A&E bit.

Yes, triage. It's difficult. I think if somebody's seriously, seriously unwell, it's pretty good because you pick it up; people can tell when somebody looks unwell, but the more subtle things that are hard to spot, maybe not so much. And I think it's such a hectic environment with such a changeover of staff that it's a focus for real, consistent training around it because missing the one or two is often fatal. I think a lot of work has been done in that area, and I don't want to criticise the amount of work that's been done, but I do think we need to measure the effectiveness of that, and I think sometimes, we measure compliance more than outcomes. So, if somebody has been trained to triage, to spot sepsis, how do we measure that that's effective? So, there is some training concentrated in those areas, but I couldn't sit here and tell you what the effectiveness of that is at the moment.

And do you think that they are all being trained, so not just the ones who have been trained and if it's effective—do you think that that message is actually getting out? I'm thinking of, perhaps, Rachel's case and things like that.

Yes. I think it would absolutely depend on who you ask and their experience. So, another case you're referring to, Rachel Day, in that case, very often not; maybe there wasn't the right safety-netting in that case. Other people might say that they went into A&E and it was a different experience. I think the issue, more than it being around individual cases, it should be more about consistency across the board so we don't have to compare a Rachel against a Matthew. Otherwise, that's about luck in a way, 'Did you see the person who got trained yesterday?', or I'd been to talk to them the day before, or it's 14 September after World Sepsis Day and everybody's thinking about it and doing it—are they doing it in the middle of the year at the same rate?

You see it with things like hand washing in hospitals. You have a hand-washing campaign, and for a week or so afterwards, you see the infections and things drop off, then they go up again because people forget about it. So, you need a concentration of training and to revisit it, but I think you have to look at whether the training that's being given is adequate for the outcomes that we hope to get.

And could you just make a comment on whether or not you think that ambulance crews, paramedics, and, indeed, the ambulance service in terms of the call centre are sufficiently sepsis-aware to pick up somebody with potential sepsis?

In my experience, and having had them at the cross-party group, I would say that they're one of the better ones. I don't know whether you're inviting those guys in to give evidence, but I think there's a lot to learn from the Welsh Ambulance Services NHS Trust, to be honest. They're very open to engaging. They have a slight issue around that they're not having a sepsis protocol card for sepsis when they have it for so many other things, but they were willing to go away and think about that. They have introduced something into their call handlers, I know, to escalate to a clinician for advice if there's a suspected sepsis in the call they receive.

So, I think they're doing pretty well, WAST, to be honest, and I think other arms of the health service could probably learn from the way they approach things. They need to be good because, as I was saying earlier, the first people you see are really, really important. They're the first responders often. They need to be good because they're the ones who are going to make these really quick decisions. I think that they are the best of the bunch, to be honest.

I agree, although I would like to just re-emphasise the consistency point, because when I collapsed on my kitchen floor and the ambulance came, they thought I had severe flu and they said, 'Do you really need to go into hospital?', and with that typical Brit thing, 'Oh, gosh, no, I don't want to—'. It was only the fact that my husband laid down in front of the ambulance, practically, and said, 'She is going', and that one action saved my life. 

Again, compared—. I was just going to say, 'In my experience—', but I've never been picked up by an ambulance. But, no—

No, but it's the consistency. So, that was just a bad experience and a good experience. 

I think, in terms of being realistic in what we hope to achieve, perfection isn't going to—. It's not going to be perfection. We have to be able to accept that we're not going to be able to be perfect every time. The same as when we say—. When we talk about people who die from sepsis and people who can be saved, we're not saying that we can save every person who dies from sepsis in Wales—or should we think about—? They're extremely ill. But there are people within that group of people in there where deaths are preventable, and that's where ambulances come into it. Everybody's a part of making sure that the sepsis outcome has the best chance of being a good one.

Joy and John, is that your experience of ambulances?

When John was taken ill, I thought he was having a transient ischaemic attack, because my mum had had a TIA, and again, it's about awareness, isn't it? He had slurred speech, and confusion and I thought, 'Oh God, he's having a mini stroke'. That's why I rang 999. When the ambulance arrived, when the ambulance people came out, they realised he was very poorly, because they sent for a paramedic, but no, they didn't recognise sepsis at all. They thought—.

Sorry, Angela.

We've already touched on this to an extent, but I just wondered if you wanted to add to anything at all to the post-sepsis care and what happens when a person who's had sepsis is discharged from hospital. You covered it very eloquently, to be honest with you, John and Joy, but I just wondered if you wanted to add anything—any of you?

Like you say, John did a brilliant job of giving his experiences. What I'd add to that is that John's experience is not unique—I wish it was, but it isn't. There are lots of—they're not all as nice as John, but there are lots of people who have had John's experience, and they continue to do so. We've spoken to Public Health Wales, and we have chatted about this. That gap has been identified. There's a huge gap in support for people who have—sepsis survivors. There are majors issues with it, often. John said it took him four months to speak to us at the charity, and that's been really helpful. That's a long time if you've just left hospital.

Some simple measures, I think, should be introduced, when somebody is discharged with sepsis. We've got a post-recovery booklet in the Sepsis Trust that we developed here in Wales that we're really proud of in Cardiff and Vale. It's great. It tells you all the things that might happen to you, or they might not, but it prepares you for what's coming. John didn't know that he was going to feel tired and wouldn't be able to get out of the car. If he doesn't know that, that's a major setback for John. But if someone says to John on leaving, 'You're not going to be good for quite a while yet, mate; you're going to struggle to walk from that car to the door, but you're better off being at home where your wife can look after you, et cetera, and you can all be together. But be prepared: this could happen.' Being told that four months down the line does not help John get out of that car, so that needs to be done a lot earlier. So I think simple information on discharge would be huge.

Good. Done?

Just one quick question I omitted to ask you: what would be the next stage of work that you would like to see the rapid response for acute illness learning set programme focus on?

It's Improvement Cymru now, isn't it? They've gone through a—.

I get so confused, I can't keep up with the name changes.

I think there's a lot still to come from Improvement Cymru. I think we need some commitment, really, around support—that's clear. I think we need to revisit the training that's out there and the data they collect, and is that adequate? What I would really like to see Improvement Cymru be able to answer would be—. I know they are working on this so I'm not here to criticise them. What they implement, the measurement needs to be based on outcomes, not compliance—'What we implement, does it all work?' And that's the first thing. I would like them to do a lot more around support and a lot more around awareness but I know that they—.

I was part of the RRAILS steering group and there's been a period of reflection about where that's sat and what it could do within its remit. I think they're moving on from that, and I've spoken to John Boulton from Improvement Cymru, and he's very open to—. As I said earlier, I'm very honest with him, and I said, 'The conversation is stilted. It's gone a bit stagnant and we need to move it on.' So, I'm looking forward to having those conversations with them and having some commitments to them from—. Sepsis is only part of what they do, so they look at deterioration overall and acute illness, but I would like to see a commitment to really move the conversation from sepsis a bit further forward.

The comprehensive nature of the answers so far is going to overtake the remaining questions, I fancy. Lynne?

Well, I do think that my question's been covered. Can I ask something else?

Yes, absolutely.

Thank you for sharing your story with us. I'm just struck with how incredibly traumatic it is, and I'm interested to know whether there are any—you did refer to it, the lack of psychological support—examples of good practice where people have been able to access counselling, or some sort of therapeutic support afterwards?

I'm going to have to say I don't know them; I'm not aware of them. It often depends how ill you are. So, for example, one of our volunteers and ambassadors, Jayne Carpenter, she was in intensive care and was an amputee. So, her follow-up was fantastic due to the nature of the severity of her outcome. So, in certain circumstances, the follow-up is excellent; it's the people in John's situation where it's not so great. You only get a follow-up from ICU if you've been there for four or five days. If you're on the wards, you don't get anything. I'm not aware of anyone coming to our support groups who are saying that, or people I speak to, but to be honest, if they're coming to us, it's probably because they haven't had it somewhere else. So, I wish I could give you a good example of that, but I can't.

Can I just add something on the RRAILS thing as well? I do want to compliment them on the introduction of the common language you can use. That's going to make a big difference down the line—that standardised common language of risk is really important. They've also done a peer-to-peer review, and I'm looking forward to, throughout all the health boards, the outcomes of that. So, they should have a body of work to bring back to say, 'This is where we are and we can take this forward'. But they need to do that.

Great. Jayne, to round things off.

Thank you, Chair. And thank you so much for all of your powerful evidence. You've given us so much to think about, and I think, as the Chair has said, so many recommendations already.

You've mentioned hospital discharge and the lack of support that you had there, and you mentioned that you sought support from the UK Sepsis Trust. Do you just want to say a little bit about the support that you have given, or you were given, by the UK Sepsis Trust?

When John was in hospital, I went on the internet to look at what sepsis was, because I didn't have a clue, and that's when I first saw the UK Sepsis Trust, and there was some help on there that gave me some idea of what things were. But then, like I said, I had support from the support group that was held down in Cardiff. But we live in Abergavenny, so, I mean, it's quite a jaunt to come down once a month. And if you're not well and you can't drive, you haven't got access to that support. But the support we've had from there has been terrific. Obviously, they give you—. It's listening to real stories by real people when you go to those support groups, isn't it? And they've actually been through those things. The other support group we attend is the ICUsteps, which has been a good help, because that is held in Abergavenny as a monthly support group. But, yes, that's really the support we had to talk about it.

Could I just make one point on that? John, I don't think he'd mind me saying, is a very different man to when I first met him. So, he's a clear success story of support. But I think the main thing around that peer-to-peer support, or only the information that we can give people, is that it normalises their condition, their recovery. Because people often think that they're the only ones, and they're suffering in silence, but the information and the peer support, it normalises it. You're not the only one who forgets your name, you're not the only one whose hair fell out, you're not the only one who can't walk up the stairs.

And when people walk into support group rooms, they either see themselves five years, three years, two years ago, but they all have something in common, and it's the commonality of it, I think, that speeds up the recovery. But they often find that out too far down the line. So, if you bring all of that forward closer to discharge, that'd be a huge advantage to people's recovery. People who leave hospital with sepsis are often back in there within 60 days or whatever, so they're going back into the system that's just put them out. And is there a real need for that if somebody's having something that is, really, known to be associated with their original condition? So, we're treating people twice. So, it's, 'No, you're going to go away and this will happen, so do this, this or this, otherwise you're coming back and maybe it could've been dealt with earlier.'

Okay, thank you. And just finally, are there any points that you think that you haven't had a chance to raise or any things you want to put on record as priorities or—?

I have a couple, if I've got time. I have to reiterate that it's really good for us to be in this position with you guys in here. We've worked hard to get here. We're really happy that you brought us in and you're interested in our opinions. It's really good. I represent people, including myself, who have had the most horrendous experiences with sepsis. I don't deal with too many people who are saying to me, 'I've had a brilliant experience with sepsis'. We're in here representing them, and it's an honour to be able to do that.

I think the thing that we need to bear in mind is: what do we need? Education saves lives, awareness saves lives; with sepsis, it's about speed, and that saves lives. We need to be proactive and not reactive in terms of prevention. I know the health Secretary himself has said that prevention is at the heart of a healthy Wales, and that was part of a body of work called building a healthy Wales. So, that's what we need to do; we need to give people the chance to be able to do that.

So, we need to review current health professional education to see if it's adequate. We certainly need to consider committing or at least scoping out the possibility of a campaign, so we can complete that chain, because it is a chain. It's a chain from the community, through schools, surgeries and clinicians, right the way through—it's a chain, everybody's link in that chain is really, really important, and that's what's going to lead to better outcomes. The final thing would be that we need to support people like John and the 25 per cent, 30 per cent, 40 per cent of people who survive sepsis with ongoing issues.

So, they're the three things I would say: review of current education processes around sepsis for health professionals; consideration of a sensitive and responsible campaign to inform the public to make informed decisions; and it's absolutely essential that we provide support for the survivors, because the better we get at diagnosing sepsis, the more survivors we're going to have, and they're not all going to survive it well, because it's a very, very serious condition.

My final point before I hand to these guys is: I was at the NHS Confederation conference yesterday, and I was sat there, listening away, but what was up on the wall, their banner for the day, was in big red letters, 'Working together towards a healthier Wales', and that's what I want to do. That's what we want to do, and I think everybody here wants to do. We all want the same things in this room; it's very important that we listen to each other, collaborate, and that whatever's learnt through this process in these rooms doesn't stay in them. It needs to leave and be looked at seriously.

So, those would be my closing points, really. Thank you for involving us in the process. If there's anything else you need from me or us throughout the process—if we haven't covered everything today—I'm very happy to provide it. I'm very happy to work with you, because I think we all really want the same thing.

Good. John, any closing remarks?

Just one closing remark: the only reason Joy and I attended here today and support the UK Sepsis Trust and do talks to medical professionals in their training is to get the awareness out there and, by doing it, giving our voluntary time. If we achieve that, it's all been worthwhile over the last six years. But quite honestly, I think more needs to be done on awareness. I don't honestly believe you would have the stampede that has been suggested by getting that public awareness up. And I think we need more training, also, within the A&E departments for identifying the early stages of sepsis when they're admitted.

Can I just add to that, John, because you've prompted me with something? The very last point, honestly: we are in danger of having a front-page-story campaign that is out of our control. Once or twice a month I see a sepsis horror story in the media, and that's more of a risk to the public, really, in creating anxiety, than maybe an informed campaign where you can control the information that comes out. Otherwise, you have a media-driven scaremongering campaign that we have no control over. We can't prevent that happening. I tell you now, I could put a horror story in the news tomorrow, but I couldn't put a good news one in there. So, I think we need to take control of the information that we can get out to people, and that would be more responsible than having a media-driven campaign.

Okay. Joy, final word.

I didn't have sepsis, but my husband did, and all I can say is: sepsis affected John, it affected me, it affected my family. Nobody will ever know the true extent of how it affects you when you're told to say farewell to your husband because he's not going to pull through. The effect on our family has been terrific, and that's one of the reasons why I would not want anybody to go through the hell that we've gone through and, in a way, we're still going through, because John is still not well. I would just like to prevent that, and if we can in any way help you in future, we always will, and obviously the Sepsis Trust as well.

Great, thank you very much indeed. That's the end of the session. Thank you very much indeed for your attendance and for your very valuable, precious evidence. We do realise the strain that you're under, so that's why we tried to be on the gentle side of things, but we're very glad that you've been here. We're very grateful for the written evidence beforehand as well, and we're always grateful for the excellent work of UK Sepsis Trust. So, diolch yn fawr. You will receive a transcript of this conversation for you to make sure you're happy with it as well, at your leisure. But with that, thank you very much indeed. We'll break now for five minutes before the next witnesses come. Thank you very much indeed.

Bore da, diolch. Thank you very much for inviting me to come and talk and give evidence today. I think it's a great question, and I think this is one of the things that has been challenging not just Wales but many countries: do we really understand the incidence of sepsis? I think if you actually look at the work that we've done across Wales, I'm going to argue that actually I think we're leading the way, to a good extent, in some of the work that we're doing in terms of gathering evidence and data. There's some very good research that has come from across Wales, some of it from within my team, when it was formerly 1000 Lives. Other teams, other departments across Wales, really are seeking to understand the prevalence and the incidence of sepsis, and that has contributed to international literature. I think there's the opportunity to do more. I think there's the opportunity to do more about us really understanding—and I'll open this up broader than sepsis and acute deterioration—about how we really do seek to understand the incidence, the prevalence of these conditions. It's really important, and I'm sure in the previous session you heard this as well: the earlier we can intervene, hopefully, the better the outcome.

In the earlier session, we heard real concerns about the gaps that the Sepsis Trust saw in the data that were gathered. Could you tell us a little bit more about where you think the improvement has been seen? It's quite a claim to say that Wales is leading the way on data collection. How are we leading the way, and what are the gaps that you think still remain?

So, leading the way in terms of really seeking to understand the prevalence of sepsis within healthcare systems. There have been numerous papers over the last several years seeking to understand that. The evidence across Wales suggests that, at any one time, we have roughly about 5 per cent of patients within a hospital who are suffering from sepsis, which seems quite high. It surprised me when I was looking at that data. That has fed into the international literature and again, I think, really pushed that need and the agenda to actually really think about and address sepsis in a different way.

I think there are still opportunities for us to actually think and really seek to understand are we truly seeing and picking up and identifying all patients who are at risk of either—even stepping back, even before they get to a diagnosis of sepsis, those who are at risk of acute deterioration, or are on the cusp of acute deterioration. I think there's a real opportunity to move, certainly as a nation—and I think we're well placed as a nation to actually think about this—further upstream and identify those patients a little bit earlier.

Moving to the other side of sepsis, we're starting to develop a sepsis registry that will be housed within Public Health Wales, which actually provides us with a fantastic opportunity to really understand in more detail sepsis, how people undergo sepsis, what are the risk factors for these individuals, what are the demographics of these individuals who suffer with sepsis, and then starting to help identify—and I do think this is where there is a gap, and I'm sure the Sepsis Trust also said this—how we identify and support those in the post-sepsis environment.

Yes, we'll come back to those issues in more detail later on. Just a couple more general questions. Again, on your claim that Wales is leading the way on data, the First Minister said last month that he believed Wales was leading the way in the UK on sepsis. Now, on that, I assume he means on early identification and treatment and outcomes. It would have to include all that if we are to make that big claim that we're leading the way. Do you think he's right to be making that claim? Because the UK Sepsis Trust said, 'Nice claim, where's the evidence?'

I think there's more to do, and I think there's an opportunity at the moment. We've shifted from 1000 Lives into Improvement Cymru, and we're starting to reflect on the way that we lead our work and we support the healthcare system. I think there's an opportunity to actually do things in a slightly different way and start to accelerate some of that. 

In 2013, we were the first nation across the UK to embed a national early warning scoring system in the UK, and that went across the system. We have evidence that, as we embedded that, there was around a 20 per cent reduction in mortality from sepsis across Wales. I think one of the things that we're seeing is that's not continuing to improve. It's dropped, we've got a sustained drop, but actually we need to accelerate that. I think we need to be looking at some of the other issues. We've got really great recommendations, and I think the rapid response to acute illness learning set steering committee over the last several years has produced some very good recommendations. I think one of the things that we need to do is help the system embed those recommendations reliably. 

And if I may just add, the next rapid phase for us when we've got the registry up and running isn't just, as John has said, the key of identifying who, not only just to say who's gone through the system with sepsis, but identifying what are the common attributes of people who would be more at risk. It's also about outcomes as well. In addition to identifying people who have been diagnosed, which is what we do as a public health observatory, it's following on the linkage then to outcomes at discharge within an appropriate series of time frames after that. Because that will then give us the picture, because it's about what difference are we making. So, we're training a lot of people, and John can talk a little bit more, I'm sure, about that later on, but it's how do we basically learn from what's the impact, what are the outcomes, what do we need to differently. And when we've got the data in one place, we'll be able to do that in a much more agile way. 

Okay. Angela wants to come in on that point.

Yes, just on the registry. From the evidence that we've received, I understand the registry is only for patients in the acute ward. So, therefore, how will you be able to pick up all the sepsis cases that happen on ward, or indeed in places like residential settings? 

I think probably what I would say is that we need to develop it and broaden it. We're starting to work in the community in terms of introducing some of the early warning scoring systems, so we can start to look at how we look at acute deterioration in the community. As we do that, I would suggest and hope that what we do is we start to extend that sepsis registry into surveillance of the community environment as well. 

With hindsight, would you have started going out to the community with some of that work earlier, rather than concentrate quite so much on the acute setting? 

No, not necessarily. I think, as a team and as a nation, we have to start where we think we'll get the most value and the most impact, and I think working within secondary care we've seen that impact. I would argue that there's still work to do in secondary care; I don't think that we're there yet. I still think that we need to support the secondary care system, but we do need to move out into the community and actually look at how we support communities, certainly with acute deterioration, but much more broadly around the broader safety agenda as well.

And we established a national care home improvement programme for the first time last year, which is key. So, this is treating people not only about detection of sepsis, but what do you do and the whole improvement methodology for that. It's also about insight. It's people recognising early, and when we've got that training and that awareness and that language, it's easier then for us to track it through and detect it. So, that's going to be quite key, and how we evaluate the impact of that going forward will give us more knowledge about what the gaps are.

And if I can just follow up from what Tracey has just said there, we've been working with care homes for the last year now, and one of the things—this is very significant learning and I think this does speak to your question—is the understanding of the improvement methodologies that my team teaches, to some extent, well embedded within secondary care and healthcare, is a very, very different language to what we're seeing in care homes. So, actually embedding that knowledge, that skill set for improvement, as well as bringing in these tools and techniques, has been a challenge, and we're learning our way into that. I think there's a real opportunity for us to actually shift in that direction, but it has meant that we've had to really refocus and change the way that we're actually approaching some of this work.

Just to look back again in general at nearly 10 years of the RRAILS programme—sorry, if I'm asking you to repeat yourself a bit—how would you assess the main gains and main challenges that you've faced over that decade of RRAILS?

I think they've been a very useful support network that has managed to synthesise the literature, the evidence, the data, collate and demonstrate evidence of improvement as we've embedded tools and techniques such as the new score supporting the early identification of sepsis. So, we're actually able to demonstrate much better compliance with the delivery of antibiotics within the first hour in the emergency department.

I think one of the challenges that we've got is the demands on the system, how we're able to actually support a large system, and I think one of the things—and it's certainly a reflection that we've been through over the last 12 or 18 months as we've shifted from 1000 Lives to Improvement Cymru—is that we need to increase our support to the wider system, not less. And I would take that across Wales in acute deterioration as well as other programmes. I think we'd recognise that whilst we'd done good work—we did embed NEWS across the nation, we have seen a reduction in mortality, we are seeing better compliance with elements of the bundles—there's more to do. There's more to do. There's more to do in terms of supporting, there's more to do in terms of training and educating people, there's more to do in terms of helping people understand, and educating people to recognise the signs of sepsis early.

And as I say, we'll come back to some of those issues in more detail, but finally from me, I think, looking forward and the new Improvement Cymru programme, you talk in your written evidence about a broader safety programme, what does that mean, and will sepsis still be a priority within that? What are your plans for NEWS and NEWS2? And just in general, I guess, where are we headed on sepsis? Where does it fit in?

One of the things that I've reflected with the team on is that we were asked over the last 18 months by Welsh Government—and this was on the back of the parliamentary review—that we must reinvigorate, we must refresh, we must respond differently to the system. And whilst we've had 12 or 13 programmes of work, they've felt at times quite siloed—that they're not sharing the learning and the opportunity. And I think that also puts pressure on the wider system in bringing people out to events when, actually, I do think that we could actually do something more collaboratively and share learning across some wider pieces of work.

I've always had a desire for a wider safety programme, and if we wound the clock back 12 or 13 years to when the RRAILS steering group was starting to form and we were starting to think about acute deterioration, we had something called the safer patient initiative, which is where the 1000 Lives campaign originally started. Now, that was a broader safety initiative that actually encompassed acute deterioration, healthcare-acquired infections, and other components such as venous thromboembolism and pressure ulcers. I'd like us to return to that, because I think there's an opportunity to actually share learning across a broader system, and I think I would like safety to rise up on the agenda—much more than it has been. And I think that's where we're at at the moment. I think we've done good work and please don't think that I'm here criticising the work, because I'm not. I think there is the opportunity to actually look at how we support the system, how we support this notion of spread and scale. There's a lot of innovation, there's lot of very good work in the system, but I think we need to find a different way of pulling people together and actually sharing that learning. Yes, it's about education, but a lot of this is about embedding systems and processes that are then reliable.

Can I, just quickly? All of those health issues that you mentioned there are very, very important, of course. I can imagine some people who have a focus on sepsis in particular listening to that and saying, 'Isn't there a danger here that sepsis gets lost among all those other very, very important things?'

So, my answer to that is 'no'. It's one of the leading causes of mortality. We need a focus on sepsis, but I'd like a focus on safety because a number of the elements in terms of the early identification of sepsis could be taken across some of those other components as well. Healthcare-acquired infection and sepsis are inextricably linked. Antimicrobial resistance and antibiotics stewardship are linked and we need to be pulling these together. There's a need for us to actually recognise that there's a lot of burden of work on staff in the health and care system who—. We're asking them to come out to these events and you will often see people coming to one, two, three events for different programmes, and I do think there's an opportunity that, actually, we need to respond in a different way. So, if I'm pulling nurses from a ward for three different events, when, actually, it could be one event, I think there is an opportunity for us to actually help and support in a very different way.

Okay, thank you. Diolch.

Can I—? Sorry, just to add to that, a few things I've mentioned previously to the committee in my former role as head of a health and social care regulator in the Republic of Ireland, and the way we got traction was actually about patient safety, and that is from early detection that it's simply not safe enough to not treat somebody appropriately, and that's really what the focus of this is and sepsis is a key, key element of that.

The second thing is the register. That will give us knowledge that will identify what targeted interventions are working and that aren't working in a way that we haven't had before. And we've taken the point absolutely about how we roll that out into the community as well. So, getting the traction around behaviours and the threshold for patient safety, which needs to be at the right place in Wales, sepsis has to be part and the centre of that because, actually, it is back to the silo thing. There are people who may not, I think, identify it as potential sepsis, but they should identify that there's something wrong with this patient, that they are acutely deteriorating and they should be doing the observations that we would expect, even if they don't recognise it as sepsis, it's unsafe not to. So, it's about, 'How do we get that traction to drive it through?', but not using the focus of sepsis, absolutely not.

The answers I've heard to date have very much focused upon recognition of early intervention, early awareness, but everything I've heard has also been about the development of that early awareness amongst professional staff. Surely, we should also be looking at early awareness amongst the public because, in your own written paper, you say,

'Sepsis...carries a terrible cost, not only in terms of mortality but...the consequences that survivors may have to carry with them for the rest of their lives.'

As you say, you identify five per cent of patients in hospitals are suffering from sepsis. So, that's a large number, with 30 per cent—only 30 per cent, I would say—recovering fully, whether the others have had other consequences or mortality. So, surely we should be doing more to also help the public become aware so that as they are, sort of, getting to the feeling of being unwell, some of those symptoms, they might actually realise themselves, 'If I go and see now, it's not going to be too late', because I've known of circumstances where people have been literally within an hour of being too late because they don't always feel it's appropriate to go down under those circumstances.

So, why aren't you doing a public awareness campaign? You've done one for other conditions. It's very difficult, I appreciate, to talk about effectiveness, but stroke is a perfect example of where it's a generic one, anybody could be impacted by it, you don't target particular people with stroke, you target the whole public. So, why aren't you doing one for sepsis just so they are aware of particular conditions? You've identified those symptoms yourself in your paper. So, why aren't you doing it? 

Great question. I think there's the opportunity, and one of the things that I would like to actually consider is—. You can take this away and actually say, 'Why aren't we doing it?', and, 'What's the evidence for us not doing it?', and, 'What's the evidence for us doing it?'. I think one of the challenges that we have—. Stroke is a great example, but the symptoms of stroke are really quite specific. The symptoms of sepsis and the signs of sepsis often present in very varied ways, and even for trained healthcare professionals can be difficult to pick up. So, a broad campaign may be difficult for us to do. There is little evidence to suggest at the moment that that broader campaign with the public about sepsis necessarily would give us the outcomes that we're actually looking for, and part of it may well be that we're not seeing those outcomes because it is so very, very difficult for us to actually assess.

But the other thing, as well, is, one of the challenges that we've got is who's at risk of sepsis. And it's the entire population—anybody could be at risk of sepsis. I guess one of the questions is: what do we mean about a public awareness campaign? Is it the whole population or do we think about targeting specific groups? Those who we do know are at risk of sepsis are those people who are immunosuppressed for whatever reasons, whether they've got a medical condition or whether some of the therapies and treatments that healthcare gives them, should we be focusing on some of those? And I think there's an opportunity for us to think about how we could support some broader education and awareness in that space.

There is already some awareness campaigns that we do do in and around infection and acute deterioration. We do have a flu campaign, and that is very much addressing, and trying to address, some of those vulnerable groups, and whilst flu itself doesn't necessarily cause sepsis, a secondary infection on top of it when you have flu almost certainly does. Likewise, pneumococcal vaccination in certain high-risk groups, we do make people aware.

I was a trained rheumatologist, and if I go back to when I was giving patients some really quite considerably strong drugs that did impact on their immune system, there was always advice and awareness—'You need to be really aware that if you get an infection, you feel unwell, you do need to actually seek medical advice.' So, one of the things I'd like to explore is, 'Is it a broad public awareness campaign or should we be more targeted?' My feeling is that we should do the latter, but I would like to work with the UK Sepsis Trust and see what we can do in that environment.

In the example you've just given me, flu being a possible option, many people do suffer with flu, and as you've just identified, sepsis can come as a consequence of flu. How many people who are caring for loved ones who have flu would understand those symptoms or see those escalations and think, 'Actually, rather than just ride it out because it's flu, I need to get hold of somebody fast.' And that is a very serious concern. I might be aware of it, but if I'm the one with the flu, my family are the ones looking after me, and will they see things such as, actually, I haven't been to the toilet for a while and perhaps I'm starting to be delirious, is that flu, is the temperature of the flu causing that? But these are factors, so, surely, whether you say targeted or not, everybody needs to understand the consequences. And if they see these things in individuals, you may want to even highlight the example of, 'This can come from flu, but if you see the symptoms, it may actually be more than flu.' So, you say a target audience, it's actually a wider audience, because anybody can get flu and anybody cares for that person.

Can I just—? Yes, and we would all absolutely agree with all of our family members as well. I think the challenge is, how do we—? This is about behaviour change, as well, and I don't mean behaviour change as in saying people should change their behaviour, it's about making a decision or an option based on something that you have knowledge around in a way that perhaps you wouldn't have done before. So it's really trying to understand what would be the messages and how. Because I'm a great believer it's how we do it, not just what it is that a campaign says; it's how and who and at what point in time are we engaging with different parts of the population?

We've set up a behaviour change unit for health and well-being in Wales that we're establishing at the moment, and that works with and engages with different parts of the population, different groups, different places in Wales, to really understand, with them, what are the insights that will mean that 'I'm paying attention to this message that's coming at me' rather than, 'I'm not.' So, what is it that would trigger someone to recognise those? And, actually, one size doesn't always fit all because we will all receive information in different ways. So, I guess where we're at, which is, as John's saying, we want to do more work on it. Because we keep coming here and saying that there's no evidence that it actually demonstrates that it impacts on outcome or, necessarily, is sustained, and that's the other thing for me, is actually sustaining it. But that may mean—and I'm not criticising colleagues who have done it in other countries—that how it was done then may be that, actually, we could do it differently now in a way that does have an impact. So, as John said, we're keen to work with the UK Sepsis Trust to explore what that would look like, and work with the behaviour change unit to see if we can work with parts of the population around some insight work.

Because if we're going to do it, we need to be really clear who in the population we want to exchange that message with and make it easier for people to do something about it. We've run campaigns, we do lots of campaigns, and the word 'campaign' means different things to different people. But we do those that we know will be sustained, and we've been quite successful, to give a bit of an example, with a social marketing company, working with different parts of the population in Wales around Help Me Quit and smoking cessation. This was targeted by understanding different messages for people to make different choices in different age groups. What we've done, and I'm not saying the same applies here, but we've actually worked with them to do social media targeted prompts and messages for people that reflect the different parts of the population and that's made a significant impact on people who've been accessing support. But that was about really understanding our population and what makes people want to do things differently. I'm not saying that there's an analogy there; I'm saying that, perhaps, the evidence that has suggested that campaigns that don't necessarily realise an impact—it may be how they were done then. There could be something different that we could do now that could realise an impact. So, we want to take that away and do some work with the trust—

I've listened to that, and there are two points in your answer. I heard the word 'if' we want to do it and I would've liked to have heard the word 'when' we do it, rather than 'if' we do it, because I appreciate that you say when we do it—

Well, I said we would like to take it away and work with the UK Sepsis, so we will be doing it—

Yes, but the word 'if' was there and I think it shouldn't be an 'if', it should be a 'when'.

Okay, apologies.

My second point is that you've identified in your own paper that this condition is something—. We haven't got a full set of data, we know that, but even from the data we've got, we know that this is a serious and widespread condition. So it's something that is not so narrowly focused; it's quite widely focused, and, therefore, I would have thought would require you to take a serious agenda on this, to say, 'Right, when we do this, how quickly can we do it and what do we need to find out do it?' I think that's the answer I would have preferred to have heard rather than 'if it's a possibility'.

Well, I'm sorry, can I just add that I did say we would take it away? I think I said, 'We will take it away and work with UK Sepsis Trust', so, we will do it, but whatever we do, we need to make sure that it's right for Wales, and I don't mean taking three years to do it, because there's no point in investing public money when it's not going to make a difference to how people understand sepsis. So, it is about getting it right. So, I agree with you.

Angela.

Thank you, I'd like to really take the same kind of question and move it into the professional sphere in terms of awareness within healthcare professionals. I did read your evidence with interest and your submission to the consultation response. I just wondered if you might give us an overview of the differing levels of awareness between acute, residential and community settings.

I think it's varied. I think the level of knowledge for the acute deterioration, certainly within secondary care, is considerably higher than community, be that nursing homes or otherwise. Part of the reason for that is because that's where much of the focus around acute deterioration sepsis has been in the past. Not just within Wales but internationally, there's a recognition that we need to be moving that education further upstream, out into the community, and, certainly, from a professional perspective, it's helping those who are working with, caring for and supporting individuals at risk to be more effective in identification of that.

In terms of the work that we're doing, and, again, there are a number of educational programmes that the RRAILS and the acute deterioration team have set up, a lot of these are electronic, online. There's a lot of training and teaching that the team and the broader network actually deliver. And I know that Health Education and Improvement Wales aren't here, but there are, at the moment, conversations between my team and HEIW to look at how we get acute deterioration and the broader safety agenda into the undergraduate curriculums as well. So, all of that training is taking place.

Now, what's happening in the community, at the moment, I would say that there's a gap; it's not as well embedded in terms of understanding and recognising some of those early signs of acute deterioration, and we need to move into that space. I think we're recognising some of that as we're working with the care homes. These are different tools and techniques, different ways of actually looking at and working with the residents, and I'd probably extend it even further—should we be doing things with district nursing, et cetera? I would argue that we probably do. Some of it, unfortunately, is probably going to take time just because of the size of the ask. 

A bit like your answer to David Rees's questions, it seems to be a very slow process to get there. We've had conversations about this in the past, and only now, 'Yes, we'll work with the Sepsis Trust'—we could have done that a year or so ago. Again, with the out-of-hospital settings, I think the acute settings are really steaming ahead, but in my capacity as chair of the cross-party group on sepsis we wrote to every single doctor's surgery in Wales on this issue, and the responses were basically disheartening, to say the least, because it's not just the doctor, but actually quite often, it'll be the nurse practitioner who sees somebody who presents now, or it'll be an occupational therapist who's out in the community who might see somebody, or a chronic condition nurse—they all have multiple levels of training, and there is no clear protocol or step system. When we tackled the care sector, we've got care homes that don't even practice septic techniques, let alone spot sepsis. So I would say that it's not just a gap. I don't know what's a bigger word than 'gap'—it's a gulf, and I'd be really interested to know how you would address that.

I picked up two things, actually, from your response. One is the comment that there'd be scope to make modules mandatory for some professional groups—I'm surprised it's not already mandatory, and I'd be interested to know how resolute you intend to be on this. You wouldn't say to somebody, 'It's up to you whether or not you learn about stroke'. That's what you learn about, so ditto with sepsis. 

The other thing is that, in your response to the question of identification and management of sepsis in out-of-hospital settings, you give us a list of things that can be done, but again, an awful lot of that list is hospital-based. It's about huddles, it's about hospital board deterioration steering group, but those guys don't actually really filter out to the residential home with 40 elderly patients, an awful lot of whom might get urinary tract infections, which, as we know, is a classic sepsis generator. So I just wanted to get your feel on how you're really going to get out to those areas. 

So, if I can pick up the one around education first, I agree with you that, actually, recognition of acute deterioration probably should be mandatory for all professions. That isn't within my gift as director of quality improvement and patient safety. We're having conversations at the moment on the back of the peer review about how we take some of this forward and ensure that these are actually being embedded, because the recommendations— 

Sorry—in whose gift would it be?

I would see some of this—. This is where I think there are good conversations that we're having, and regulatory bodies such as the General Medical Council, the Nursing and Midwifery Council—I think there's the opportunity for myself and Health Education Improvement Wales to actually support this and drive this as well. I completely agree with you that we should be educating and training people appropriately in this space, and what I can say, and can reassure you on—and I did have a conversation about this yesterday when I was at the NHS Confederation—is exactly this: how do we embed this and actually get everybody trained? Those conversations are starting.

I think one of the things, when you take the recommendations of the peer review, to some extent, the peer review was secondary care focused, which is probably why a number of the recommendations look like they're from secondary care. The evidence base around sepsis and the interventions in primary care and community setting isn't necessarily there, and it's certainly not as well researched in the literature. I think that gives us an opportunity, and I actually think it's quite an exciting opportunity that we can contribute to that knowledge base as we're starting to move out into the community on two fronts. One is the introduction of the national early warning score into community settings as part of the acute deterioration programme, but also taking some of the learning in care homes about how we help educate and embed some of these tools and techniques to actually address how we identify acute deteriorating patients. 

So, is my take away from that, because you're talking to the GMC and the Nursing and Midwifery Council, that, actually, sepsis training isn't part of the standard training to be a doctor or a nurse? Or does it just get subsumed in the welter of everything else? 

Reflecting back on my own training, sepsis training was part of my training and I would expect that it still is part of the training. I am not part of training curricula development, so I can't say 100 per cent definitely, but I would expect that it would be. I think one of the challenges as well is that it isn't just education and training, and this is well recognised within the literature. Education and training alone do not necessarily improve outcomes; it's actually helping and designing systems and processes that enable that education, training and learning to be effectively applied and reliably applied. So, I'm going to say that it's both: it's education and training—and I think this is where my team, as Improvement Cymru, comes in to support how we really build systems that give the professional staff the capacity and the capability to design a system that enables it to be reliably embedded. 

And whilst it's poor in undergraduate qualifications, when you go into the real life in any profession, it's a different world. It's about sustaining that competency and, as evidence evolves, and our requirements for people to work differently, detect differently, intervene differently, it's got to be part of an ongoing process. Otherwise, people lose that skill. So, it is about continual professional development as well as the undergraduate, and now that we have Health Education and Improvement Wales, at least there's an entity that we can go to that covers everybody that says, 'Actually, how do we enforce this?' Because as you rightly say, the secondary care, we've immersed it. The whole issue is about what impacts they're having and what improvements they're having for outcomes, and then the follow-up for people, but the gap is primary community care. And often, what people say is people don't have time to do that training, so we've got to find a way around that because that is a gap, and that's the source—you go into hospital from the community. Of course, you could develop sepsis in an in-hospital environment but, of course, by far the majority is people who are coming from the community. So, what we need to do is sustain effort to really try and immerse that and work through the systems to make sure that there is an ongoing modular development for people.

The care homes issue is interesting, and having been immersed in care homes in a former world, the people who work in care homes support the most vulnerable of our population, and yet they are really not—I'm sure some are—as trained to the level that we would want, and it's not just around sepsis; it is about tissue viability, it's about nutrition, it's about everything that deteriorates someone that puts them into hospital avoidably where they could be exposed to healthcare-associated infections. So, I think we violently agree with you on this one, and I think one of the actions for us is to really try and find some solutions with HIW about how we ensure that we systematise this, because it is about systematising a way of working and detection, really. 

Do you have a timescale? 

Not immediately. The conversations have already started. The peer review was submitted to Welsh Government and we've already started those conversations about how Health Education and Improvement Wales and our team actually start to think about working together. I'm going to make this a priority action to actually make sure that this is embedded. Again, going back to what Tracey's just said about care homes, there is so much learning that we've done over the last year about how we need to do this very, very differently. For example, the staff of care homes don't travel; they can't. We've got to go out to them. That means that we have to do the model in a very, very different way. This is a priority and I'm going to say that this is a priority beyond sepsis and acute deterioration; this is a priority to embed a system so that, actually, we make sure it's as safe as we can make it. 

Can I make one final comment on this on the role of regulators, because some care home settings are privately run? So, it's how do we ensure, through the commissioning of those services as well, that, actually, people are trained appropriately, and the regulation is obviously ensuring that you've got sufficient numbers of suitably-qualified staff, but to do what? So, there's a regulatory element in this as well, and a commissioning element, just to make sure that for those public sectors—. Public sector—it's much easier for us to work with. But, actually, the private sector is what's the locus, and often it's following where the money goes and financial flow and the commissioning arrangements for that, and the regulator who will come in and scrutinise. So, Healthcare Inspectorate Wales will be excellent in driving us forward, but it's also about how we work from a social services inspectorate, but also from Healthcare Inspectorate Wales as well, because there's a dual role in those. That's a really important driver around sepsis and safety in its own right.

I'd just like to make two very quick observations on what you've said. The first is: please don't forget domiciliary care. We have an awful lot of elderly people who live on their own. Or not just elderly, actually, but people who are just, by life's circumstances, very isolated, and their carer is the only person who's really going to spot the difference in their behaviour.

And the second goes back to the point that David Rees made, that—it's very difficult as a GP or as a nurse; you're presented with somebody, there's lots going on. But if you have a family member who can say, 'You know what? John doesn't normally behave like that', or, 'Fred is—. I know Dad's got dementia, but this is something different; this is a confusion above and beyond, and he's got a wee infection and he's got this', it helps to flag up. And it's got to be, I would have thought, a benefit to the professionals, because they will not know that person as well as the people closest to them will.

And, as we've said, we're keen to explore the option and possibility of a campaign and an awareness campaign. There's a huge amount to do, even before we talk about public awareness. Like you say, domiciliary care: what are we doing in terms of actually raising the competency of those professionals to actually identify sepsis? And it may well be that, in the first instance, as we're exploring what we do in terms of public awareness, we start to think about what we do with those groups.

Absolutely. Thank you.

Okay. Moving on, Jayne.

Thank you, Chair. Following on, just looking at acute settings, do you think that the ambulance service has the right processes and protocols in place to effectively respond to suspected sepsis cases? You've talked about, John, processes and procedures. What's your view on—?

We're working with Welsh ambulance—we're seeking to embed the NEWS score within the ambulance service. I think one of the challenges that the ambulance service has had, certainly over the last several years, is just responding to the ever-increasing demand on the service and identifying the individuals, the high-risk individuals. It's a real challenge.

I wouldn't want to necessarily comment in detail about their processes as I haven't sat there and actually gone through their processes in detail. I suspect there's probably more that we can do to support and help them redesign their processes. I know that there's a lot of work within the Welsh ambulance service in terms of redesign, continuously focusing on improving their processes. We continue to work with them to support them, but one of the reflections again that we've had over the last year, and it's part of the reason why we've changed to become Improvement Cymru—we've had significant support from Welsh Government in terms of a larger budget to enable us to do that. I do think that we need to be providing greater support to the system to enable it to change and make sure that those processes are as reliable as we can make them.

Okay. And, John, opportunities at discharge, when people are being discharged from hospital when they've had sepsis or suspected sepsis. There seem to be opportunities perhaps missed there to provide information about symptoms and to monitor as well as possible after effects. Are there any plans to look at the work there or any—?

Yes. I think there's—and, again, there are gaps, probably a chasm, again. Within the literature, there's a real lack of evidence in terms of post-sepsis support. What should we be doing? How should we be supporting these individuals? There is much more that we can do in terms of information, support groups. I know that the Sepsis Trust produced a report in the middle of 2019 looking at what post-sepsis support could be. I'm quite keen to actually explore that. I think there's a real opportunity to actually think of some really great work within Wales in terms of what person-centred care would look like in that post-sepsis syndrome for the survivors of sepsis. Even those who recover fully—. That 30 per cent that recover fully probably will have and be at risk of quite significant psychological challenges, and I think some of that we need to be teasing out. The sepsis registry gives us an opportunity to identify who those individuals are, but I think there's a huge opportunity for us to do some work within that space and I'd really like the opportunity to.

Okay. Thank you, Chair. 

David Rees to round things off, then.

Thank you, Chair, again. In your own paper, you identify that 40 per cent of sepsis survivors will have life-changing effects, and, before I go on to my question, I want to express my disappointment at the wording in your paper, and I hope you'll reflect upon it, when it says that those who survive, basically, represent

'a significant burden to health and social care.'

Survivors are not burdens to our society. They do require, as a consequence, additional resources, perhaps, but they're never a burden. So, it might not be interpreted and meant that way, but, please, when you use words, please be careful how you use them. It isn't appropriate.

And I apologise. That's an oversight on my part. I apologise.

But, clearly, what we heard earlier in our first evidence session was deep concern over the lack of support post-discharge of that. And you say—you've identified yourself that a large proportion would have these more complex needs as a consequence of that. So, how can we actually now resolve—? If you're talking about awareness, are you also talking about awareness to the professions to ensure that people who are being discharged are actually given more information and more support to understand the implications and the symptoms they may face as they leave hospital so that, if you get a condition that makes you less mobile, as we heard earlier, they understand that's part of the condition and that can be overcome rather than thinking, 'What the heck? Where am I? What is happening to me?'

I think there's a significant opportunity, and, again, I think there's a gap in this area—and this is not just in Wales, this is internationally—in terms of support for people who have survived sepsis. It is a challenging condition and it's probably—. Even without physical symptoms, it is probably incredibly tough for people to make sense of what's just happened to them in the way that they've been through an intensive care unit and had all of those interventions, or whether it's been managed on a ward—there will be significant challenges.

I think there's real opportunity for us as a healthcare profession and caring professions to actually be more effective in how we share information, and I think there's opportunity for us to be more effective in how we bring groups together who have suffered with sepsis and how they share some of those experiences.

I haven't suffered with sepsis. I'm very fortunate that I haven't, but I think the opportunity to bring people together who have had experience and actually support and share some of that learning, actually provides a real opportunity. I think what we really need to do is explore what those support mechanisms are, what the interventions are that we can do to help, and what the information is that they need to actually help them and get them back to as normal a state of living that we can get them to.

So, are you, therefore, telling us that you are going to champion the aftercare support and, as part of your programme on sepsis, that's going to be one of your agenda items, to make sure that all organisations who are discharging are aware of it, everyone should be given some form of package of support or identification as to what the conditions are, so that the awareness is not just about awareness of a symptom but also awareness of the consequences post-discharge?

I think I'd probably extend it beyond that: what's the support post-discharge? What both physical and psychological support—? Are these support groups—? Part of the programme of work that sits within Improvement Cymru is the educating patients programme, which the Sepsis Trust did report on. That does some very, very good work, but it doesn't appear to be the right vehicle at the moment for post-sepsis support. So, what would that be? I'd be really keen in actually thinking about what is person-centred care in that support space for this cohort of the population. So, yes, it's about giving good information at discharge, and the onus is on the healthcare professions. But then what's the more medium to long-term level of support? And, at the moment, I don't know. If you look at the literature, the literature doesn't know either. I think there's an opportunity here where, actually, we could learn and we could do something potentially quite exciting in Wales to actually support it.

And I entirely agree. It's working out what's the mechanism—who and what's the mechanism—and to really look at what's the solution to it. There are a couple of things in my mind, and one option—and we need to work this through with survivors of sepsis; they are the people who need to design this, not us—is whether or not we adapt the expert patient programme for one option.

The second thing is that there's a big push in the NHS at the moment about what's called prehabilitation, which is really about support and advice for people before a procedure and after a procedure. It's wellness and well-being—mental well-being as well as physical well-being. And whether or not there's an opportunity—. Because it's got to be close to home and local for people. And, of course, you may be discharged, and this may not manifest itself for a couple of weeks after you're discharged.

The third thing is, as NHS chief executives, we lead on a number of areas, and one of the areas for me is cancer. Macmillan have been absolutely superb in providing that kind of community support for people in the way that they want it when they need it. So, there's a potential funding model that we need to look at to say, 'Well, what do people want?' People will want different things at different times in different ways, so how can we adapt to that? Because it is about people's well-being, but it's also about people being able to get back to living their life in a way that they want to live their life, and the effect that it has on family members as well. Again, for us, it's working—and I think you've already spoken to the Sepsis Trust—through what are the questions we need to ask to identify a model for that, and how do we co-design it with people so that it can meet the needs. How we resource it, how it's done—we need to work that through.

Okay. I appreciate that very much, and I appreciate the fact you're agreeing and in touch with the sense that you need to work with survivors to put that package together and to have those discussions. What are the timescales we're talking about? Because, clearly, again, as you said, we can't leave this for three, four years.

I'm keen for us to think about the person-centred care approach from Improvement Cymru in the next three to six months. Having reflected and prepared for this evidence session, and a couple of other conversations that have come together more recently, I think post-sepsis care feels like it might be the one that I'd like to look at and test first. So, hopefully, this year, as we start to get something up and running in the next 12 months—I'd hope it would be within 12 months, if I was perfectly honest.

You may want to call us back in to see what we've done in—

Yes. Very happy to come back in.

I'm sure we can do that before the end of this Assembly.

I'm happy to do that, and provide more information.

Good. Okay.

We'll move on to the next item.