We have one item of business remaining, which is the short debate in the name of Angela Burns on 'Sepsis—The Chameleon'. And I call on Angela Burns to introduce the short debate. Angela Burns.

Diolch, Presiding Officer. I'm going to talk at great speed because I have also promised to give a minute to Julie Morgan, to Janet Finch-Saunders and to Suzy Davies, and I have a lot to say on this subject.

It was a bank holiday weekend less than a year ago when Rachel knocked on her flatmate's bedroom door in the early hours of the morning and asked her to take her to hospital because she felt very ill. This vibrant 29-year-old had felt a little unwell the previous evening, but four hours later she was saying to her friend, 'I think I'm dying'. Rachel arrived at the Heath, and, after a few quick checks by the triage nurse, she was told that there was a five and a half hour wait to see a doctor, and that she should be okay and the best thing to do would be to go home, take some paracetamol and rest. In all, Rachel was in the accident and emergency department less than 30 minutes, but the awful truth was that Rachel was already in septic shock.

Her mum and dad, Bernie and Steve, decided on a whim to have a coffee near Rachel's flat and called her. Their beloved daughter managed to scream down the phone, and the distraught parents raced to her side. Ambulances were called for, and the first responding paramedic was rather offhand, refusing to let the sick woman lie down, because he couldn't take her blood pressure. The reality is that her blood pressure was now so low it was very difficult to discern, and that one fact, if nothing else, should have screamed a warning: 'This could be sepsis'. Rachel was taken to UHW, and in the resuscitation unit they told her and her family that she would need to be put into an induced coma, as she was in septic shock.

Rachel asked if septic shock was life-threatening, and the doctor responded to her and her family that, as she was being treated, it would be okay. Steve and Bernie never spoke to their daughter again. This very normal family had no real understanding what sepsis was, what septic shock meant, or what the possible outcomes were. Rachel was taken into theatre to have incisions in her arms and legs in order to relieve the pressure build-up. But, after the procedure, her family were told that Rachel would have to lose both of her legs and her right forearm. By then, they had learned how other sepsis survivors, like Jayne Carpenter, a nurse at the Royal Gwent, have coped with the loss of three limbs, and so they felt that agreeing to this surgery would still give Rachel a chance to have a good life and that she would want to fight for that.

Rachel was taken down for surgery, but, after just a few hours, doctors told them that she would also have to lose her left arm. The family struggled to process all this awful information; they were told to think on it overnight. However, the next morning, the doctors told them that the decision was no longer theirs to make. They said that Rachel would also lose part of her face, that her brain function was in doubt, and that her future would involve years of surgeries and skin grafts. And so the decision was made to let her slip gently away.

Bernie and Steve are members of the cross-party group on sepsis and have given me full permission to tell this story. I do not just tell a deeply sad tale, but it's to try and make everyone realise the awful, vicious reality that is sepsis, and because Rachel's story highlights the many gaps we have in understanding what sepsis is and how important it is that it's treated fast and effectively with industrial levels of antibiotics.

I've given this debate the title of 'Sepsis—The Chameleon' because sepsis can hide behind other illnesses—sepsis, a life-threatening illness caused by your body's response to an infection such as a urinary infection or pneumonia, or a cut on your body, or an implant of some sort. The list is lengthy and often only the primary problem is perceived. Sepsis develops when the chemicals the immune system releases into the bloodstream to fight the infection cause inflammation throughout the entire body instead. The inflammation is highly variable in severity and duration, and, on a superficial assessment, is often mistaken for flu.

I had sepsis. I was caught very early on by the nurse manager at Withybush hospital who refused to let the locum A&E consultant send me home. The consultant saw a woman with pneumonia; the nurse manager saw a leg so inflamed I couldn't put it to the ground, saw the scars of the knee replacements, saw the rigors, heard the pain and saved my life because I was kept in and immediately put on antibiotics. Even so, I still spent eight or nine weeks in three different hospitals, and don't recall much of what happened.

Rachel went to A&E, was sent home and told to dose herself with paracetamol, but those 12 hours made the difference between life and death, because Rachel went into septic shock. I'm here and she is not because I got those life-saving drugs. I had sepsis, but I didn't go into septic shock.

Septic shock is a life-threatening condition that can occur as a complication of sepsis. Your blood pressure drops to dangerously low levels. The amount of oxygen and blood that reaches the body organs is severely reduced, and that, in turn, stops your organs from working properly. Both sepsis and septic shock are basically when your body's reaction to an infection starts to damage the body's own internal tissues and organs; your body becomes overwhelmed, you're fighting on every front, and, if you pull through, the likelihood of you having some kind of residual damage is high.

They used to say that a third of those who have sepsis will die, a third survive with life-changing conditions, and a third are fine. But research now shows that even that is not so. There's a much greater chance of psychological morbidity, which is directly attributed to an onslaught of sepsis. 

I clearly remember sitting at my kitchen table a few days after I left hospital, and, as it happened, a national newspaper was carrying a sepsis story and talking about the third, the third and the third, and my guilty relief at realising I was in the lucky third. But that was before I understood, as I do now, the debilitating effect sepsis has had on my health—from my crumbling bones, my dodgy blood, through to the loss of my mental sharpness. I know that some days I operate in a fog. I know that some days I'm gripped with a sorrow and a sense of loss I cannot explain nor describe. I was as tough as old boots and bloody clever, and with a first-class memory. I'm not that person any more, and I can't get back to her; sepsis took her away.

John also appeared to have relatively few physical symptoms of sepsis, but he talks of the difficult time he had in hospital when he was transferred from the intensive care unit. He says the majority of the medical staff were not aware of the journey of a sepsis survivor, from his inability to remember what had happened to him to his anxiety, lack of appetite and inability to construct sentences. Now, he's been left with confusion and speech difficulties. He can't sleep and struggles to hear. That confident man has to rely on his wife to help him through life, and he would argue with conviction that no-one escapes sepsis scot-free. 

Gemma Ellis, who is the lead sepsis nurse for the University Hospital of Wales and manages their outreach team would tell you that there are two issues here: post-sepsis syndrome and post-traumatic stress disorder. We probably all have an understanding of PTSD, but post-sepsis syndrome is a condition that affects up to 50 per cent of sepsis survivors. They are left with physical and/or psychological long-term effects, such as insomnia—boy, do I know about that one—difficulty getting to sleep, nightmares, disabling muscle and joint pains, extreme fatigue, poor concentration, decreased cognitive reasoning and functioning and a huge loss of self-esteem and self-belief. These lasting issues can be explained, but there is more to PSS that has yet to be understood, such as the disabling fatigue and chronic pain that many survivors experience and is not fully understood. Sepsis survivors have described it as: 'You never feel safe. Every time some little thing happens to you, "Do I need to go to hospital, or is this nothing?" is what you think.'

Which brings me to the story of a lady who e-mailed me on Easter Saturday, distraught—not my constituent, but she'd somehow found me. She'd lost her child in labour and also contracted sepsis. She was treated and recovered. Nine weeks later, Easter Saturday, she felt very, very unwell, had the same set of symptoms as before and was terrified it was sepsis again. Reading her account is shocking. Not only was she rebuffed by A&E and out-of-hours, but there was no recognition that it might be sepsis again, and above all no recognition for the trauma she'd been through and her mental state. I'm in contact with her still. She didn't have sepsis, but she was very unwell. What a situation when an ill person turns to someone like me for help on an Easter weekend, because she was told to go away and get a grip. This is a very small excerpt from her e-mails: 'Doctors said it was found quickly before it could do any damage, but I can't help but think "What if it's back?" I don't even know what I want from this e-mail, but knowing you've been through this yourself, maybe you could help reassure me. I don't know much about sepsis. Doctors didn't really explain much, and Google has all sorts of stories. Thank you for taking time and reading my e-mail'. 

Cabinet Secretary, this sums up for me the real lack of awareness of what sepsis is in the general population, and the enormous gaps in the knowledge base and understanding of a great many in the medical and caring professions. My sepsis was three years ago. Rachel's was last year, and this lady's experience happened at Easter, 11 weeks ago. What has changed? Yes, there is a greater awareness amongst some, and I do recognise the intent of the Welsh Government, but on the ground, changes and training are slow to happen. There are some dedicated teams leading the charge in most health boards, but neither I or others on the cross-party group are convinced that this effort is able to make the changes we need. These teams are being supported enormously by the UK Sepsis Trust, which is led in Wales by Terence Canning, who also has first hand experience of losing a loved one because of sepsis. 

I appreciate that the Welsh Government are seeking to help sepsis survivors by signposting them to services and putting in place self-management plans, but sepsis survivors need far more dedicated support than that. I mentioned the indomitable Jayne Carpenter earlier. Having survived the trauma of losing multiple limbs, she and her husband then went through all manner of hell trying to get support so that they could carry on living in their family home. Social services simply didn't understand the issue. Adaptations to her home had to be fought for, and Jayne describes a punishing means-tested system. The reality is that their marvellous network of family and friends have paid for almost all of the adaptations that Jane needed to carry on with the new normal that is now her life. 

There are actions that can be taken, and I pay tribute to the UK Sepsis Trust for the work they've put into pushing this agenda forward, but I'm calling for more action by Welsh Government. I know there are costs and staff implications, but a public awareness campaign and much more training of everyone, from domiciliary care workers to consultants, is vital. This picture shows NHS England encouraging ambulances to display the UK Sepsis Trust's 'Just ask: Could it be sepsis?' poster. We could do something similar. The chief dental officer in England has agreed to mandate sepsis warning posters in English dental practices. Can we do the same here? The cross-party group survey of general practice showed a woeful lack of recognition and understanding. Can we run a campaign into general practice? Cabinet Secretary, we also need to have post-sepsis clinics, and an understanding that sepsis is a major illness with significant impacts on people. We need to support survivors and families and the bereaved in a much better way, and involve other public services, such as housing and social care. The NHS works in close collaboration with charities such as Tenovus and Macmillan in delivering support for those with cancer. The NHS could work in just such a manner with organisations such as the UK Sepsis Trust. Will you undertake to look at that?

The UK Sepsis Trust are working on a national sepsis registry in England, with a place at the table for NHS England, NHS Digital and the UK Sepsis Trust, amongst others. And here I know that Dr Paul Morgan is leading on developing a sepsis registry for Wales. Could you update us on progress? Because if we can get reliable data, we can target NHS resources more effectively. Can we look at other models that the UK Sepsis Trust are already engaged with and see if any are suitable for Wales? And, finally, Cabinet Secretary, with one voice, we all ask for a properly funded public information campaign in schools, in mother and toddler groups, in care homes, doctors surgeries, anywhere and everywhere, because we all need to ask, 'Could it be sepsis?'

I'd like to congratulate Angela on obtaining this debate and for her powerful and moving speech. And I'd also like to congratulate her on setting up the all-party group, the cross-party group, and for the work of Terence Canning, who is a constituent of mine from Llandaff North, and who first made me aware of this issue.

The point that I'd like to raise is the effect on the families of people who have sepsis, because this is such a sudden, such a devastating illness, that families can be thrown into total upset, total confusion and their whole lives turned upside down. I've met some of the people that Angela referred to in her speech and saw the catastrophic effects on their lives. So, I'd like the Cabinet Minister, when he does respond, to say what plans there are to help whole families cope with this devastating situation, and also to help the people who have lost someone through sepsis, because, again, that's a very sudden and traumatic event. Angela has vividly described the effect on the individuals involved and what is it that we could do to help people who are also bereaved by this cruel illness that is sepsis, but I also support the call for more awareness, because I don't think enough people yet recognise sepsis when it does occur. 

We're out of time, but I'll take two very quick contributions from Janet Finch-Saunders and Suzy Davies. 

Diolch, Llywydd. Again, I'd just like to endorse and pay tribute to Angela for her contribution there that covered so many aspects of sepsis. Daily, we're reading now about how brutal this disease is, and how people are still very much unaware. I would just like to touch on people who are 'hospital at home', who are in an environment where they are reliant on carers coming in, and how quickly things can escalate, such as a urine infection. And then, when they're taken to hospital, even now, I am being informed of cases where it has not been identified. Could it be sepsis when people are there? And, literally, their lives are ebbing away. Sepsis is a horrendous thing. And one thing is that once you've had sepsis, it is a fact that you can never, ever think that you'll—. It leaves its mark on you and it can come back at any time when your C-reactive protein levels are up, any time that your resistance is low. So, this is really an important debate here tonight, and it's one that I wholeheartedly support Angela Burns on. Please make an awareness campaign. Get that education out there in schools, in hospitals, in care homes, in hospitals at home, in people's own homes. And please, Cabinet Secretary; you have the levers, please use them and let's not see such horrendous scenarios that I am only too well aware of myself, but also with friends, colleagues and my own constituents in Aberconwy. Thank you.

Can I say thank you very much, Angela? For me, for the last 40 years, the word 'septicaemia', which is the same thing, was just the word on the bottom of my grandfather's death certificate. And when he died, completely unexpectedly, in hospital, he was my grandmother's carer and, as Julie has indicated, she ended up going into a home, having a stroke and the whole family was devastated within a few months. I think it says a lot that, even though the UK Sepsis Trust has done an enormous amount of work on raising awareness, it has actually taken a radio soap opera, which ran a very, very upsetting storyline, to really raise awareness within the population generally. And I think that has to be a prompt for you, Cabinet Secretary, to really take seriously the requests that are being made of you today to run a national, or at least a Welsh national, awareness campaign, not least for carers and care workers. As Angela said, this disease is a chameleon, and, as your Minister says, we are not quite in a position yet to confirm that all our carers and care workers are fully trained in sepsis awareness. Thank you. 

The Cabinet Secretary to respond to the debate—Vaughan Gething.

Diolch, Llywydd, and thank you to Angela Burns for continuing to raise this very serious issue. I want to start by recognising that sepsis can be a difficult illness to diagnose, particularly in elderly people, but also in children. And that is part of the challenge in dealing with this successfully. Sepsis is estimated by the UK Sepsis Trust to cause the deaths of around 44,000 people every year in the UK, and that would equate to about 2,200 people here in Wales. The figures show that, over the last five years, the number of people who have died annually in a hospital setting in Wales as a result of sepsis decreased from 2,112 to 1,687, so a real reduction but still a real number of people who have continued to die within our hospitals.

The number of incidents of sepsis in Welsh hospitals in the same period actually increased from 6,950 to 8,313. So, that does show that there is a greater awareness of the illness with more people being diagnosed, but the percentage of deaths is decreasing. Sadly, not all of those deaths will be avoidable, but we can be confident that a number of them are. That is why, since 2013, the Welsh Government has, together with the NHS, made the reduction of the avoidable harm and mortality caused by sepsis a high priority for NHS Wales. I well remember, on World Sepsis Day, when I was a Deputy Minister at the time, Mark Drakeford decided that he would do an event on World Sepsis Day to try and raise awareness, to raise the profile of the condition within the service.

Now, we do recognise, frankly and honestly, that there is always more that needs to be done to combat what can be a deadly disease, but I do want to recognise some of the progress that we have made to tackle this life-threatening condition. To be fair, Angela Burns has recognised this as well. We should be proud of the fact that we are seen as leading the way in the UK in making sepsis recognition and treatment a top priority. Our fight to combat sepsis continues, and a huge amount of work has been done since 2012, when we were the first country in the world here in Wales to implement the national early warning score system, known as NEWS. That should ensure the early escalation of patients who are seen to be deteriorating. And that simple step should ensure that we're using a common language throughout NHS Wales to communicate about deterioration and sepsis. NEWS and sepsis screening have been introduced in all acute clinical areas, in the Welsh ambulance service trust and in many community and primary settings. We should be proud of the fact that, in Wales, NEWS has been standardised in all of our hospitals since 2013.

The main vehicle for that change here in Wales has been the active participation of health boards and individuals in the 1000 Lives improvement service rapid response to acute illness learning set, commonly known as RRAILS—and I'm glad they have an acronym at least within the service. But it's clear that there's still lots of work for them to do. They're a huge important part in helping to try and drive system-wide improvement, because we have to continue to try and live up to the recognition that we received in 2016, when the progress NHS Wales had made in improving the treatment of sepsis was recognised by an award from the Global Sepsis Alliance in the 'governments and healthcare authorities' category.

But, as with all things, we can't assume that progress is obvious, easy and inevitable. We have to constantly review what we are doing to ensure ongoing improvement. There is always more that we are able to do in keeping learning and improving, and peer review is an ideal and important part of that. The RRAILS programme involves peer review of the management of acutely deteriorating patients, and it's been developed to enable each health board and trust to develop a proper plan to approve the acute deterioration services that they have. It is good to hear that this work is already well under way, with a series of visits to health boards already having taken place, and more planned. Both the reviewers and the staff being part of that peer review recognises that it's been an important and helpful conversation for each of them.

Recently, the public services ombudsman commended the 1000 Lives work around the peer review, and he acknowledged the impact that that work is having on improving services and saving lives. Other issues are under way, including the work on the development of a sepsis registry that Angela Burns referenced. But the results of a trial in the Cwm Taf 'sepsis 6 box' study suggest improvements in patient outcome, associated with the use of that box. That includes reduced mortality and intensive care unit admissions, and a significant reduction in NEWS at 24 hours, which is an important marker of patient recovery. I am seriously looking forward to a further evaluation of the trial results, so that final conclusions can be reached to see if we could and should roll that out across the whole country.

I want to try and address the difficult question of a public awareness campaign. I say it's 'difficult' because I understand completely the case that is made about wanting to raise broader public awareness in the hope and the expectation that that would save more lives. The practical problem and question for me is whether the money and the resource we'd put into a public awareness-raising campaign would deliver the outcomes we want in having improved outcomes for people.

Would you take an intervention, Minister?

Yes, happily. 

You talk about saving lives, and you're absolutely right, that's very important, but, actually, the thing about sepsis is the destruction it causes to the people who do survive it. So, if you can get into a hospital quicker, then you are less likely to lose your limbs, you're less likely to have your brain basically scrambled by the sepsis, you're less likely to be left with debilitating long-term conditions. So, when you talk about the fact that the deaths have gone down, which is great, and when you talk about the fact that you're seeking to improve it, I would say to you that there are still way too many people who present to GPs or to hospitals with symptoms that are not recognised quickly enough. So, even though they go on to live, they live with such catastrophic consequences that their lives are completely changed.

I really do recognise the case for wanting to raise broader public awareness, but there are times when you have to look people in the eye and say, 'I'm not sure the case is made to do that', and that is an honest reflection on the advice that I receive on the effectiveness of awareness-raising campaigns across a range of conditions. It's the reality of what, in part, my job involves: a fairly regular number of people who want the health service to conduct individual condition awareness-raising campaigns, and on a range of pretty common conditions, actually, with large numbers, like sepsis, and serious conditions as well. I always have to consider not just receiving that advice and then making choices but where is the greatest gain to be made—where is the greatest health gain to be made—and I actually think that part of our challenge is that I think that, at this point, most of the evidence points to—raising awareness amongst our health and care professionals will help to identify symptoms at an earlier stage, with more consistency, and then more consistency not just in the identification, but then in the treatment and support that people receive. I do, though, retain an open mind, and I would not say 'no' and 'never', but what I will say is that, at this point, I don't think there's a case that I could support with the advice that I have about what is the right way to deliver further improvement in outcomes to people in Wales. But I'm more than happy to keep on talking and keep on listening, and I know that there is a determined campaign to want to continue to review the evidence. And, actually, if the evidence in England is that it is not just the right thing to do from the very obvious passion that people feel around the issue, but it makes a real difference in outcomes—[Interruption.]—then I'll be more than happy to listen and look again.

The awareness amongst healthcare professionals is something that we do recognise feeds part of the inconsistency of our service responses. That's why the work that we're doing is largely aimed at health and care professionals, not just raising their awareness, but about thinking what they then do at that point in time. There's a pre-hospital sepsis group, which is a sub-group of the RRAILS programme. That's been established, and it draws together a variety of stakeholders to plan for improving practice in the outside hospital environment. A number of projects initiated from that work include collaboration with GP clusters about acute kidney injury and sepsis improvement, how to advise the out-of-hours and 111 groups on adopting NEWS and sepsis screening in a non-hospital setting, introducing sepsis and acute kidney injury tools in district nursing and intermediate care teams, and collaboration with the deanery here in Wales on clinical placements for GP trainees. 

The standardisation of best practice has led to a similar standardisation in training methods and the curriculum. RRAILS online in a modular e-learning tool developed by Abertawe Bro Morgannwg health board in collaboration with and funded by 1000 Lives Improvement. That is available to ensure that all NHS Wales staff, including medical and healthcare students, will be able to access the same level of training. Data on the uptake and the pass rate for that module to date has already shown 477 passes for one of each of the five modules. There is, of course, always more to do, but there are staff who are accessing it. I see on my regular visits around the hospital sector as well as outside hospitals that there is a raising of awareness amongst our staff about sepsis and an awareness of it and of its consequences. But the information gathered from this will feed into the data gathered as part of the ongoing peer review process.

I am pleased that we have a very good working relationship with the UK Sepsis Trust, which is a member of the RRAILS steering group. We have a shared ambition to raise awareness and improve the response to sepsis. I was very happy to be invited by Angela Burns, as chair of the new cross-party group, to attend the meeting in March where we had the opportunity to hear first-hand some of the personal stories of those directly affected by sepsis, much like the story that you opened this debate with, and of course your own experience as well. 

I do know that sepsis does carry a terrible cost, not only in terms of mortality but, as you and others say, the effects that survivors have to carry with them. And it is therefore important to listen to sepsis survivors to hear that often they have to cope with physical and cognitive challenges, which again have been set out within the debate, and that can radically change their life, and to understand their experience as part of what we then need to do to respond to try and make sure that we continue to help that person to live their life to its fullest.

So, I'm keen to understand those wider needs and what sort of arrangements need to be in place to help meet them. I'll be happy to come to a future meeting of the cross-party group to continue the openness and the conversation that I'm trying to set out and continue. We recognise we can't do this in isolation. It's important we continue to collaborate with all key partners to achieve our shared objectives. That's why I'm pleased that there is a collaborative project between the UK Sepsis Trust, the RRAILS programme, and the 1000 Lives education for patients programme, aimed at offering support to people who have post-sepsis syndrome. 

I'd like to close in recognising and expressing my own personal admiration for all of those people who have spoken out about their experiences with and of sepsis, people directly affected, people who have survived around them, carers, loved ones, and I recognise the tireless campaign of those people to try and make ensure there is further action, but, ultimately, that should lead to a further improvement, so that more lives are saved and more people who live through sepsis are supported in their recovery journey. That is a vital component of our shared fight against sepsis and to ensure that we build on our learning Wales-wide and we never take for granted the progress that we have made and concentrate on what more we could and should do.

That brings today's proceedings to a close.

The meeting ended at 20:23.