Joint Committee on Health díospóireacht

Awareness, Prevention and Services for the Treatment of Sepsis: Discussion

An Cathaoirleach

The purpose of today's meeting is to consider awareness, preventative measures and services for the treatment of sepsis. The meeting will be divided into two sessions. The committee will first meet with representatives from the Irish Sepsis Foundation, End Sepis, and Lil Red's Legacy Sepsis Awareness Campaign, following which it will meet with representatives from the HSE.

To commence the meeting's consideration of this matter, I am pleased to welcome Ms Doireann O’Mahony, chairperson, and Mr. Conor Callaghan from the Irish Sepsis Foundation; Ms Orlaith Staunton and Mr. Ciarán Staunton, End Sepsis; and Ms Karen Phoenix and Mr. Joe Hughes, Lil Red's Legacy Sepsis Awareness Campaign.

Witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against a person or entity by name or in such a way as to make him, her or it identifiable or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

Members are also reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official either by name or in such a way as to make him or her identifiable. I also remind members of the constitutional requirement that they must be physically present within the confines of the Leinster House complex to participate in public meetings. I will not permit members to participate where they are not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside the precincts will be asked to leave the meeting. In this regard, I ask any members taking part via MS Teams to confirm, prior to making their contribution to the meeting, that they are on the grounds of the Leinster House campus.

We have received opening statements from our witnesses. They have been circulated to members and will be shown on our website. In the interests of enabling witnesses and the members to contribute to the meeting I invite our guests to concentrate on key issues in their opening statements. The opening statements will be read into the record anyway so perhaps there are a number of points they may wish to highlight and that is up to themselves. T o commence our consideration of the dangers of sepsis, I invite Ms O'Mahony to make her opening remarks on behalf of the Irish Sepsis Foundation. She is very welcome.

Ms Doireann O'Mahony

On behalf of the Irish Sepsis Foundation, I thank the committee for the invitation to attend this very important occasion. As Ireland’s only sepsis charity we are delighted to see the issue closest to our hearts being put firmly on the political agenda this morning.

The Irish Sepsis Foundation was set up in September 2022. We have all been given a lot of hope and energy by the progress that we have made during that short time span. As a not-for-profit organisation we rely solely on the goodwill of our members and volunteers, all of whom have been affected by sepsis in some way, and all of whom share a very firm and strong commitment to furthering our goal of better survival rates and a better quality of life for those who survive sepsis. We all believe that the more people in Ireland who know about sepsis, the safer everybody will be.

I am accompanied by our member, Mr. Conor Callaghan, who is a sepsis survivor. I think it is important to hand over to him to hear what he has to say.

Mr. Conor Callaghan

I am 24 years old. Last March, I contracted sepsis - I was diagnosed after five days in hospital - which led to a bleed on the brain. I had an aneurysm from which I was meant to be left paralysed down my left side. Luckily, that clotted off and I am still here, and I am not paralysed. I spent a total of 12 weeks in hospital. Two valves in my heart were damaged, which required me to have open-heart surgery twice during my stay of 12 weeks. I felt that there was nowhere to go in hospital, nowhere to turn to and no one to talk to about my experience. I truly hope that correct procedures are put in place and that if anyone else has to go through this, they will not be alone.

Ms Doireann O'Mahony

I hope that everyone now appreciates that sepsis does not discriminate. Anybody can develop sepsis at any time. That is why it is so important that we are here today and why we continue to highlight the time-dependent nature of this deadly condition.

Conor is considered by many to have been one of the lucky ones. In certain ways he is but that is also why his experience, strength and hope is something that we all need to listen to and hear about. We believe that the HSE must not only to listen to survivors and bereaved people but really hear what they have to say. Listening to them is often the only thing required to help someone. We implore the HSE to do the following: pay attention; show that it is listening; defer judgment and respond appropriately. The response is the most important. We owe it to anyone who has been directly and indirectly affected by sepsis to do better. We believe that it is only by having proper risk management strategies throughout Ireland's hospitals that there will be any meaningful change and lessons learned. It is only through that we drive down the rate of mortality and morbidity from sepsis.

Finally, I thank the committee for the opportunity to be here.

An Cathaoirleach

I thank Ms O'Mahony and invite Mr. Staunton to make his presentation. He is very welcome.

Mr. Ciarán Staunton

Dia daoibh go léir. Níl aon áthas orainn a bheith anseo mar go bhfuil ár mac marbh.

Orlaith and I, along with our daughter, Kathleen, came by our son's grave this morning and that was a preventable trip. His death was preventable. When I spoke in Ireland in 2014 there were 1,851 preventable sepsis deaths and, in 2021, the number had increased to 2,700. We know the families who are here. We know that 15-year-old Lil Red's death was preventable, and his mum and dad are here. We know that the death of James Corcoran's sister, Tracey, was preventable and she left two young children behind. We also know that 42% of hospital beds in Ireland are filled with patients with either sepsis or infection. That is the reality of the numbers.

I thank the Chairman and this committee for hosting these historic hearings. I thank him for inviting my wife, Orlaith, myself and our daughter, Kathleen, to be here today because these are not numbers we are talking about. They are people. They are sons, daughters, sisters and brothers. I want to underline the word "preventable". These are preventable deaths, a preventable buying of coffins and preventable funerals.

My name is Ciarán Staunton. I am from County Mayo and my wife, Orlaith, is from County Louth. Our daughter, Kathleen, is with us. Kathleen was only ten years old when she had to bury her brother, Rory. Many of the members know our tragic story because his death should never have happened. It should never have happened anywhere in the world. What we have tried to do, and will continue to do, is try to ensure that what happened to our son in New York should not happen anywhere ever.

Rory Staunton was 12 years old when he died. Rory loved Ireland and came here every summer. He travelled from Ballydavid to Westport to Drogheda. Indeed, he was a guest here in the Dáil on many occasions with his uncle, Deputy Fergus O'Dowd. Rory is an Irish citizen and is buried with his grandparents in Drogheda.

I have given many speeches about Rory's death and our campaign. I will never be able to verbalise the hell every time we give the speech and we walk by his grave, which is a preventable graveside, because we are talking about the loss of a child, and the struggle to keep going. The last line of our speech continues always to be "his life could have been saved". When we were invited here by the committee we said "yes, it would be appropriate". As one can see from the statistics handed out by the HSE the numbers are increasing and the line that displays fatalities is ever increasing. These are "preventable" fatalities.

I will now hand over to my wife, Orlaith.

Ms Orlaith Staunton

I will tell the committee a little about Rory. He was a very healthy child. We are not talking about a situation where a child was immunocompromised or anything else. He was very healthy. He was 5 ft 9 in. tall, with big shoulders. He was a big kid.

What happened was that when he was playing basketball one day he fell and cut himself, resulting in a very slight scrape on his arm. Overnight he spiked a fever. We brought him to his doctor who said it was a gastric flu, but because he needed some fluids she sent him to one of the top hospitals in New York. We took him to the emergency department there, where staff concurred with her that it was a gastric flu. We brought him home but his symptoms worsened. We contacted the doctor - this is a familiar story for everyone here - and she said that it was still a flu and not to worry about it. That was on Friday. He fell on Wednesday. We brought him to the hospital on Friday night and he died in the ICU on Sunday evening. When we were told that Rory had died from sepsis, we had never heard the word. It was even more devastating for us when we found out that if his condition had been accurately diagnosed as sepsis when we first sought medical attention for him with his doctor or with the hospital, he would be alive today.

Since Rory's death, we have heard so many different versions of this story repeated again and again, specifically in Ireland with Lil Red and others. It is always parents or loved ones who have never heard of sepsis. Their loved ones' symptoms were missed and their concerns dismissed by healthcare providers. Rory spoke loud and clear when he was ill. He said, "I have a pain here and here. I don't feel well". Nobody listened to him. No matter how much I or his dad tried to get them to listen, they would not listen. I think that is the same the world over. It is not specific to New York. When Rory died, we thought this was just completely wrong. I never thought there was anything that could kill my child so fast that I did not even know the name of.

We then discovered that sepsis affects 1.7 million Americans every year, of whom a huge portion, 350,000, die. When Rory died, we embarked on a campaign to end these preventable deaths. In New York state, we started working with the department of health and hospitals there because we believe it has to be a coalition of hospitals, government or state officials and patient advocates. We worked with them and in 2013 they instituted Rory's regulations, which are a series of measures and protocols for the recognition and treatment of sepsis. Accompanying those regulations was a parents' bill of rights. The one thing I felt was that nobody heard me or listened to me. Before a child can be discharged from the emergency room in New York state, it has to be explained why that diagnosis of the child, or any other diagnosis that may have been considered, has been come to. At least that opens us all to understanding that there might be something lurking that we do not know about. In 2016, Rory Staunton's law was passed in the state. That is essentially about professionals working in healthcare, everyone from dentists to healthcare workers to doctors and nurses, having to complete sepsis coursework specifically in sepsis prevention.

We have met many of the people in New York whose lives we have saved. There is a huge number of them. Some 20,000 have been saved in four years. We also reduced paediatric sepsis deaths by 40% in those four years. We would like to see sepsis regulations expanded around the world. We would like to see all children have the same right to life. We do not think that the level of care that anybody receives should be different. If we can get regulations in place, no one needs to die from sepsis because it is a preventable death.

Mr. Joseph Hughes

I thank the committee for having us. The ground-breaking work done by Rory's family and the Irish Sepsis Foundation has been a great source of information and help for us as a family. Ms Phoenix will take over shortly. I have a cognitive impairment and my speech might be a little slurred or slow, but I will state a few things before handing over to Ms Phoenix.

Lil Red's Legacy Sepsis Awareness Campaign was set up in 2018 as a direct result of our son's sudden and preventable death from sepsis. We never heard of sepsis before it stole our son's life. It is now our mission to empower the public with the knowledge of how to recognise the biggest killer in the world. Lil Red's campaign came before the Joint Committee on Public Petitions in early March this year. We got great feedback from that and were very happy with it. The HSE were called before that committee shortly after that in April. We have been in Leinster House twice to give sepsis awareness presentations. We were very happy to have that opportunity.

The Irish public are being denied and deprived of a national sepsis awareness campaign that is available in other countries. Does the Irish public not deserve this? Of course they do. Responsibility and accountability need to be taken by the HSE. The information needs to be out there. There is no point having it on websites. It should be in parents' hands.

I am sorry; I am getting a little flustered and I will hand over to Ms Phoenix.

Ms Karen Phoenix

I thank the committee for having us. Seán Hughes, aka Lil Red: sunrise 3 July 2002 and sunset 12 January 2018. Seán was an up and coming rap artist who wrote and performed all his own material. He performed in the Aviva Stadium, Croke Park and the National Concert Hall to name just a few. Seán’s music can be heard on Facebook, SoundCloud and YouTube. He was a very fashion-conscious young man. He loved to be dressed in the latest designer brands. Friends of Seán have called him their role model. He was quick to help others and we are very proud to call him our son. Seán had no underlying health issues. He was a healthy lad. On Friday morning, 12 January 2018, we lost our amazing son, Seán Hughes, aka Lil Red, due to sepsis. Seán was only 15 years old. We had never heard of sepsis before it took Seán from us. Now we are doing all we can to raise public awareness about the dangers of the silent serial killer called sepsis.

There are almost 15,000 cases of sepsis in Ireland each year resulting in almost 3,000 deaths. A staggering 60% of all hospital deaths in Ireland are related to sepsis. That is an average of eight deaths every day in Ireland, and that is only what is recorded as death from sepsis. Medical professionals say that sepsis is rare, but it is not so rare and is quite common. Sepsis does not discriminate. Anyone can get an infection and any infection can lead to sepsis. Each year in Ireland, sepsis is responsible for a shocking 60% of hospital deaths, therefore, this life-threatening health condition is one that should not be overlooked.

Sepsis, sometimes referred to as blood poisoning, happens when an infection in the body triggers the immune system to turn against itself to harm the body’s tissues and even cause organ failure. The reason this happens is that a localised infection in the body has spread toxic substances into the bloodstream. The immune system tries to fight the spread but instead becomes overactive and causes widespread inflammation. This results in septic shock causing a severe drop in blood levels leading to oxygen not being able to reach tissues and organs. Bacterial infections are the most common cause of sepsis, usually starting in the lungs from a cut or wound in the gastrointestinal and urinary tract. Other than infection prevention, the best way to help protect yourself if you get sepsis is by knowing the warning signs. Studies show that 80% of deaths relating to sepsis could be avoided with early treatment and diagnosis. Administered early enough, straightforward treatment with intravenous antibiotics and fluids can halt the progress of sepsis and allow patients to make a full recovery.

Sepsis is the number one cause of preventable death and disabilities worldwide. Sepsis is a time-critical condition. If a person has sepsis, then preventing delay in diagnosis and treatment is key.

If sepsis is not treated immediately, it can result in organ failure and death. Yet with early diagnosis, sepsis can be treated with antibiotics. Sepsis deaths are preventable deaths.

An Cathaoirleach

I thank the witnesses for sharing their stories. Seán and Rory sound like lovely kids. I thank Mr. Callaghan for telling us his story as well.

Before I start, I should record that I have an interest in this topic. I have had sepsis as well, and, as Mr. Callaghan said, I am one of the lucky ones. We are also joined this morning by the Chair of the Joint Committee on Public Petitions and the Ombudsmen, Deputy Martin Browne, as well as some of its members, including Deputies Mairéad Farrell, O'Dowd and Deputy Conway-Walsh. They are all very welcome.

As we have about an hour left, I am going to go straight to business. Each member will have five minutes. I call Senator Martin Conway.

Senator Martin Conway

Deputy Colm Burke is in a hurry, so I have agreed to let him contribute ahead of me.

An Cathaoirleach

Okay. I call Deputy Colm Burke.

Deputy Colm Burke

Ms Orlaith Staunton

I am not a medical professional but it does obviously vary from case to case, depending on how fast the infection is passing through one's body and how fast the toxins are moving. In our case, by the time Rory got antibiotics, they did act to kill the infection, but the toxins had gone ahead by then. This meant there was no coming back and he was going to die. This is generally what happens. Patients go into septic shock, and it is very hard to come back again.

I call Deputy Cullinane.

Deputy David Cullinane

Sometimes evidence we hear presented before this committee stops us in our tracks and I think this is one of those days. I thank Ms Phoenix, Mr. Hughes, Ms Staunton, Mr. Staunton, Ms O'Mahony and Mr. Callaghan for their evidence today. It is important. As Mr. Staunton said, it should not be left to the families to do all the heavy lifting in terms of advocacy work and trying to seek improvements in this regard. There is much we can do, so it is extremely important the witnesses are here with us and that we are having this session. This committee needs to take on this issue as one of our top priorities in respect of seeking improvements in this regard. We will have witnesses from the HSE in with us next and that will be the first step in this process.

Equally, there was a conference a few weeks ago at which my office was represented. I took some notes regarding what feedback emerged from that conference. Included were comments suggesting that the sepsis programme in this State needs a publicly-funded research nurse in every hospital. This would not cost a great deal of money and it should be done. It was also observed that mandatory national guidelines exist but that there are questions around their implementation. We need to follow up with the HSE on this matter and seek a report from it on this matter. The feedback at that conference also included the fact that the national sepsis team audits hospitals for compliance but the guidelines in this regard are themselves inadequate. There is room for improvement in terms of basic research and diagnostics and updating against international guidelines. I think that we need to take the protocols in place in New York and those other states and examine how improvements in that context have come about, what they have done and how we can learn from them in respect of updating our own programmes and guidelines in this State. There is also a need for greater awareness among medical professionals, including, as the witnesses said, dentists, GPs, pharmacists and so on.

There is, then, a great deal that can be done. I will give the remainder of my time to the witnesses to comment, perhaps starting with Ms O'Mahony and moving on to Mr. Staunton, Ms Staunton and Ms Phoenix. I would like them to give us a sense of what they would say if they were talking to the HSE's representatives. What is the one thing they would ask them? What are the main priorities they would want to see being adopted by HSE in the very short term?

Ms Doireann O'Mahony

I thank Deputy Cullinane. We believe there should be a national sepsis strategy focused on prevention, detection and treatment. I got a taxi across town to be here. I told the taxi driver what I was coming to and asked him if he knew about sepsis. He said he had heard of it and that "It's deadly, isn't it?" and "It's pretty lethal". I then asked him if he was aware of the signs and symptoms of sepsis, and he said, "No". This is what we as a charity have consistently observed. I refer to families burying loved ones, just like this, and saying they had never even heard of sepsis until the post-mortem report came back or the doctors mentioned the word "sepsis".

The reality is that sepsis kills as many people in this country as heart attacks, strokes and some of the most common cancers. Yet very few people understand what sepsis is. We need to change this. We need to focus on, at the fundamental level, ensuring there is public awareness of the signs and symptoms.

As has been mentioned by Deputy Burke, time is of the essence. My understanding is that for every hour treatment is delayed, there is an 8% increase in the likelihood that the patient will die. That is why it is so vitally important we do that. I think the Irish Sepsis Foundation members would support me in my call upon the Government and the HSE to develop a national sepsis strategy, to show tangible evidence that they are committed to preventing avoidable deaths from sepsis.

Mr. Ciarán Staunton

We worked with the national sepsis group within the HSE. We have spoken at a number of its events and it has reached out, as have people like Professor Fidelma Fitzpatrick, Ronán Ó Cathasaigh and others. They have worked very hard with what they have got. That is the bigger problem - what have they got? We do not know. If I may go back to Deputy Burke's question, New York state has co-operated with any state or any country that calls to say it wants to know more about sepsis protocols. It is willing to talk to them. It is willing to go through it and walk them through right, left and centre. Someone else has put it together.

Mr. Joseph Hughes

We have had a couple of meetings with the national sepsis programme. One of the main things we took away from those meetings was that we asked how many full-time people work on the national sepsis programme and we were told there is nobody full-time. It goes back to accountability and responsibility. They say their hands are tied because they only have so much, they have other jobs they do, they do this and they do that. I will say again what I said earlier. The public are being denied and deprived of a national sepsis awareness programme where they bring in protocols, tied together in a package the way it is done in other countries. Do we not deserve the same?

Deputy Róisín Shortall

The witnesses are very welcome. I thank them for sharing their stories with us. We can only start to appreciate the tragedy involved in the loss of a child but when it is a preventable death, it must be absolutely overwhelming. I thank the witnesses for the work they have done. Not only are they dealing with their own grief but the fact that they are campaigning to stop this happening to other families is very commendable. I thank them for what they are doing and for raising their voices about that. I recall being at the memorial service for Sean in the local park. Clearly the family were devastated at that stage but I also recall the impact Lil Red's death had on a huge number of local young people. It was one of the most emotional events I was at. You could see how it touched so many lives. It was just so shocking that lives were being lost where the death could be preventable.

As I say, I thank the witnesses for the work they are doing. I just want to check in with them on the changes that were made in New York. What were the top three? Mr. Staunton mentioned the protocol. To what extent was that protocol, awareness of sepsis and the speed with which it moves ingrained into the training of doctors and nurses in New York? We want to learn from the success they have had there.

Ms Orlaith Staunton

Ms Karen Phoenix

We spoke to Dr. Colm Henry that day about what the procedure is when someone is suspected of having sepsis in an accident and emergency department or hospital setting. He said there is a protocol called Sepsis Six protocols. It is something like Rory's Regulations. Th HSE said it is working fine. We take its word on it that it is working fine but there are still 60% of people dying of sepsis in hospitals.

Deputy Neasa Hourigan

I thank all our guests for being here. I know it costs them personally every time they have to tell their story and advocate. I have three questions and we are short on time so I might just ask the three questions and then hand over to the witnesses. Deputy Shortall mentioned the training of doctors. I know that in other jurisdictions, such as the UK and France for example, there is training for pharmacists. When you have small children or healthy children you are more likely to run down to the pharmacy to get stuff for a child you think is fluey. Do the witnesses have any thoughts on that?

Second, today we have talked a lot about children who were very healthy but I know that sepsis often affects people who have underlying conditions. It strikes me, particularly in the US situation, that an overlapping issue here in that a lot of people with chronic illness utilise private services. I am thinking in particular of the hospital at home service. The person I was talking to recently about sepsis had a bad experience with that service and his sepsis was missed for an extended period of time. Is there a concern around how we can reach out to the HSE, and beyond that because we have a two-tier system? How do we reach out to those people with chronic illness who have a tendency to assign issues to their underlying condition?

On the third issue, maybe Mr. Callaghan could speak to this. I know the road back from sepsis is very long. For the person I was talking to it was a two-year process and they are only just back to work now. They needed occupational therapy and counselling.

Could our guests speak to that? Certainly, I would expect that any strategy would not just be about the early stages and identification but would also include that very long road back afterwards.

An Cathaoirleach

We will start with Mr. Callaghan and work backwards.

Mr. Conor Callaghan

I had it in March. I was in hospital for 12 weeks and I got out around the start of June. I am still struggling mentally to this day. I still cannot believe it happened. I was so fit that I had been training for a marathon just before it happened and I had no underlying conditions. I went into the accident and emergency department on that day and I asked them if it could be sepsis. They turned around and told me that I was too fit and well aware, so probably not. They said I would be okay and that I would be at home that night and on antibiotics. I had a seizure that night and things went rapidly downhill from there. The aftermath of it was probably worse than my time in hospital. I am still struggling day to day. I am only back to work full-time this week. It has been a mental battle more than a physical battle, even though I have had open-heart surgery twice. That was probably one of the easier parts of the past seven months that I have gone through.

Ms Doireann O'Mahony

If I can come in on that as well, what Deputy Hourigan has said about the long road back is very important, as is hearing from people like Mr. Callaghan. That is the reality. There is a huge personal human cost associated with a delayed diagnosis of sepsis when people die. This is also the case, however, when people get sepsis and they survive. The road back can be torturous.

There also is a huge associated cost to the State in the long term. For every patient who goes into intensive care with sepsis, according to the HSE's latest report the average length of stay is approximately three weeks. ICU beds are at a premium and it costs a lot of money to the State to keep people in them. If people come out of ICU, the picture is bleak. Many of them have post-sepsis syndrome, they have post-traumatic stress, it affects them mentally, they cannot get back to work or they cannot participate at the level to which they did before. They may have had amputations of digits or limbs. They may need therapies, adaptations to their homes or care in the home. Is the HSE looking at the cost of all of that to the State? We have to take a broader view. We cannot be short-sighted about this. I understand that every year, there is a budget and there are constraints but we have to consider the enormous cost and burden this is having on the State for people who actually survive sepsis. This is not just on a personal level, but on a financial level too.

Ms Orlaith Staunton

I will jump in to answer the Deputy's question on community care. It is crucial that sepsis is considered a community problem. We work very closely with the Home Care Association of New York State. We run several webinars with them. They are completely clued into training the people who are going into the homes. They have a list they have to follow when they go in to meet people. We also train others and under the Rory Staunton law, every medical person, pharmacist, dental assistant - you name it - has to do the sepsis training and that makes a big difference.

Mr. Joseph Hughes

We are very lucky that there are two local homecare companies that have taken this on board themselves and have included sepsis awareness training for their existing and new staff. They are the first port of call for much of our older population in terms of minding them and looking after them.

Sepsis deaths are preventable and sepsis is the number one cause of preventable deaths and disabilities worldwide. It all starts with awareness. That is the top of the pyramid and it all rolls down after that. The HSE is saying that the sepsis 6 bundle is working and that it has all the bells and whistles but obviously it is not. Maybe they could look at Rory's regulations and collaborate there.

Ms Karen Phoenix

One thing we said when we met the HSE and Colm Henry was that while Mr. Hughes and I are not medical professionals, a bit of common sense is needed. Would they not rule it out when someone admits themselves to hospital? Rule it out. Start at the worst-case scenario. That would save an awful lot of lives.

Mr. Joseph Hughes

We say they should just ask others who have had sepsis. Also, they should definitely rule it out with the medical professionals.

Deputy Gino Kenny

I thank everyone for sharing their stories at the committee today. As Deputy Cullinane said, this health committee has been going on for the last three-and-a-half years but it is extremely powerful to hear personal testimonies and stories. It is very helpful in relation to understanding sepsis.

It is obviously very important to get through that.

My final question is about intervention. Obviously, intervention is key in relation to sepsis and the sooner the better. Yet, what are we talking about? When somebody presents themselves in an accident and emergency department, what kind of timeframe are we talking about to prevent somebody from going into an almost irreversible state?

Mr. Joseph Hughes

That depends on the infection. In the most severe cases, somebody could die from sepsis within 12 hours.

I have not been given any information on anything since I got discharged. That was it.

An Cathaoirleach

I am conscious of the time. Deputy Durkan is next.

Deputy Bernard J. Durkan

I welcome the witnesses this morning for what is a watershed meeting. They have brought to the attention of the committee something that is highly important and has troubled many of us for a long time. Like the Chairman, I had experience in hospital not related to sepsis but related to other matters in recent times. I was appalled at some of the things I saw. The speed of identification of sepsis is the crucial and critical factor. A patient could be sitting in a waiting area for half a day and things could be getting progressively worse and we need to get ahead of that. My first interaction with the condition was in respect of pregnancies during the debate about repealing the eighth amendment to the Constitution. There can be fluctuation of blood pressure in the latter stages of a pregnancy and it can become very serious. The action taken by the medics is of huge importance at that stage.

The witnesses have confirmed everything that I have said before and, incidentally, have been contradicted before. I am sure they have been contradicted also well. During the debate to repeal the eighth amendment to the Constitution, I asked a medic how prevalent sepsis was. He said it was very rare in Ireland nowadays. I remember the exchange. I asked how many cases had happened in the previous 12 months and he stated it was three or four. I suggested that they must all have come to me at that stage and I doubted that. There was this pre-established notion that it was not a serious issue here for some reason and that it was not important; it is important. The diagnosis is very important. In half an hour, it can become a life and death issue and go past the point of no return. That is the thing we need to remember about it.

Accident and emergency departments in hospitals need to be alert to it. For example, a person going to an accident and emergency department may face a waiting period of two or three hours. That is not on; that does not work. That is the crucial time. If it is not arrested in the first three or four hours, it is too late. It is tragic for the families of people who have been affected. It would have been so easy to resolve the problem if the right intervention had been taken at the right time. We need to highlight this for professionals in accident and emergency departments and GPs as well.

In the cases dealt with, the GPs did their job and made a referral straight away. What should happen then is early testing, as that should show it up instantly. I do not know why that does not happen. In some cases, people can be waiting to be triaged in our accident and emergency departments for four or five hours. However, the full triage needs to be done as simply testing blood pressure and so on is not sufficient; it has to be blood tests and so on. The full range of events that need to take place must take place quickly to identify, isolate and come to a conclusion. It is very simple to treat, provided it is identified in time.

I again thank the witnesses for being here. They have confirmed all the things I have personally had to deal with in the past on behalf of constituents. In many cases, suddenly a person just dies and family and friends say nobody knew what the condition was. It is only through those who are persistent and follow it up that it suddenly gets recognition. The witnesses are to be congratulated on what they have done. I offer commiserations on the tragic circumstances in which they have had to do it. That should not happen at all. As far as I and the committee are concerned, the lesson to be learned is for quick action. The issue needs to be identified quickly and dealt with after which it is simple. It is like a circle. At a certain point when it reaches the zenith of that circle, it is too late - it is gone and all over.

An Cathaoirleach

I will move on to Senator Black, who I ask to confirm that she is on the campus.

Senator Frances Black

Yes, I am on the campus.

I thank all the witnesses for coming in today and telling their story. I am so sorry. I am a mother and a grandmother. I cannot even imagine what it has been like for them to go through what they have gone through, knowing that this could have been in some way stopped. That is the most difficult piece of it. Their beautiful children could have been here today if that awareness had been out there. Mr. Callaghan is going through a difficult time and I commend him on the work he is doing. I commend everybody on the phenomenal work they are doing. I hope that as a result of today's meeting something will definitely shift.

I believe Ms O'Mahony mentioned the importance of a public awareness campaign, which is absolutely vital now. There must be a public awareness campaign for sepsis. Why is it not treated as being that important? What is the thinking on that? Why is sepsis not highlighted? Why is there not as much awareness of sepsis as there is of cancer, heart disease and stroke? What is the block there? I am flummoxed on that.

Deputy Hourigan earlier mentioned pharmacies. What is the thinking on that? If somebody was aware that it could be sepsis, would it be an idea for them to go to their local pharmacy and discuss with the pharmacist what is going on? Perhaps the pharmacy could prevent this happening.

Is it hard to diagnose patients who may experience symptoms but already have existing conditions or illnesses? In the work the witnesses have done, have they ever experienced somebody who has symptoms of sepsis but they already have existing conditions or illnesses? Those are my questions. I hope I am not complicating things by asking those questions.

Mr. Ciarán Staunton

It is difficult to say why but let me provide some stark figures. Over 11 million people in the world die each year from sepsis. Fewer than 10 million die from cancer. Most people would say that cancer is the largest killer but sepsis is the largest killer of children in the world. Putting all that together, one might ask why there is not a national medical emergency for sepsis here. The HSE figures show it is almost 3,000 and rising. When Dr. Healy and I went to the Centers for Disease Control and Prevention, CDC, in Washington, there was not one piece of paper with sepsis on it. After Rory died, when we looked at the website under the letter S, there was nothing for sepsis. When we set up the international sepsis alliance, we were taking the lead on this. The chair and committee members are saying today is that not enough has been done but the buck stops now. I think out of here it will go.

As I said, one week I was in the pizza shop with my fine son being asked what kind of pizza we wanted. The following week I was in a funeral home and was being asked what kind of coffin we wanted.

Yes.

An Cathaoirleach

That is great. A number of non-members have indicated that they wish to contribute.

Deputy Rose Conway-Walsh

I particularly wanted to be here because of Ms and Mr. Staunton. I think it was in 2011 that I met Rory in Westport, County Mayo. I can relate to everything Mr. Staunton says. I thank everybody for sharing their stories today. I think this is a game-changer in terms of how we approach this. Mr. and Ms Staunton said they had never heard of sepsis. We cannot now say that as legislators.

Many of my questions have already been asked. My main question was why this happens when we can see the figures for heart attacks and strokes and so on. Senator Black asked that question.

The UK National Health Service, NHS, has care bundles and sepsis pathways. I even see some of the community and nursing stuff it is doing in places like Gloucester. It seems to be ahead. Is there a possibility for us to have an all-island approach in the same way as we have an all-island strategy with the cancer research institute?

Mr. Joseph Hughes

There is a possibility and a need, but the want has to be there. The HSE needs to want to do it. There is possibility and need.

Deputy Rose Conway-Walsh

I am thinking of something that need not completely come under the shared island initiative. There could be contributions from both sides for an all-island institute. We can look at this, so everybody across the island, not just every child, would have the same treatment and there would be a consistency of messaging.

Mr. Ciarán Staunton

I thank the Deputy for her welcome and all she has done. Rory met her in Westport, Ballycroy and a few different places. Her cousin Jimmy Campbell was good to him in New York. The all-Ireland or all-island situation is that anything is better than what we have. I have spoken to people from Daisy Hill Hospital. I have spoken at the conferences I named. Any place is better than buying coffins, losing limbs and losing loved ones. It can only improve from here onwards as far as I am concerned because "No" means coffins. The UK Sepsis Trust has an active and well-organised group. I do not know what it is up to but people are dying across the island of Ireland of sepsis and they are preventable deaths. If an area in that unit can be stepped up, I would welcome it.

Ms Doireann O'Mahony

It has been said, but I will repeat, that it should not be left to the likes of Mr. Hughes and Ms Phoenix or Mr. and Ms Staunton to constantly and tirelessly campaign for this. We must also bear in mind that the HSE published a national clinical guideline on the management of sepsis only after the death Savita Halappanavar, which made headlines worldwide for all of the wrong reasons. It is important we have these guidelines, and they are updated and so on. However, it should not be a postcode lottery either. Those guidelines should not be shelved. They need to be disseminated and implemented. Doctors and nurses need to be constantly retrained on them. They are only as effective as they can be if properly utilised. I endorse that all-Ireland approach of looking again at the clinical guideline but making sure it is in place throughout the country, so it should not matter if your child is sick in Letterkenny, County Donegal, Kerry or Dublin city centre. They will get the right treatment with the right implementation of that guideline.

Deputy Rose Conway-Walsh

On a scale of one to ten, where are we in terms of sepsis awareness?

Mr. Joseph Hughes

We are at one, two or three. We are rock bottom. The only way is up.

To go back to what Deputy Durkan said, it is all about the golden hour when people present with sepsis. People may as well go to the milkman as the doctor. Nowadays the milkman has a better possibility of knowing what sepsis is. What is there is non-existent. The tree needs to be shaken. In 2019, we met the then Minister for Health, Deputy Simon Harris, who said that €1 million would be put aside for sepsis awareness. Nothing ever happened. The Minister moved jobs. There is no continuity.

An Cathaoirleach

I call Deputy Browne who is Cathaoirleach of the Oireachtas Joint Committee on Public Petitions and the Ombudsmen.

Deputy Martin Browne

I thank the Cathaoirleach for allowing me to participate. I welcome the witnesses. Our committee has met them on several occasions. The first thing that jumped out at us was the figure that 11 million people a year worldwide die from something that is preventable. We thought after speaking to Mr. Staunton that we might get legislation similar to that in New York. We have asked the Oireachtas Library and Research Service to examine it to see whether the same type of system can work here. We are waiting for it to come back to us. I ask this committee to get on board so that, together, we can work on a cross-party paper. Deputy O'Dowd has been with us on this. We should all push to have a system such as that which the families are requesting.

Communication is a simple issue. It has been raised at our committee and again here today. September is set aside as sepsis month. This is crazy when we hear the figures involved. There should be communication every day of the week, 12 months a year. Ms O'Mahony said that sepsis kills more people every year than five types of cancers combined. No one would give out about the money spent on cancer campaigns, road safety campaigns or any other campaign that saves people's lives. As Mr. Staunton said, these are not figures; they are lives. Oireachtas committees and politicians need to get serious and insist that such a campaign is run 12 months a year across the board so that the Stauntons, Mr. Hughes, Ms Phoenix and the Irish Sepsis Foundation do not need to come before our committees to beg for help to get word out there.

When we get something back from the Oireachtas Library and Research Service on how we can move forward, I ask that this committee come on board in order that, between the two committees, we can try to get something done. I am not looking for an answer on this today; it is something the committee can discuss afterwards. This needs to be fought on a bigger scale, so that families are not the people who need to push the issue. It is we as legislators who need to push it from now on. I thank the Cathaoirleach for allowing me to speak and I thank the witnesses.

An Cathaoirleach

I thank Deputy Browne for attending the meeting.

Deputy Fergus O'Dowd

I thank the Cathaoirleach for the invitation to speak. It is very important that this hearing is being held. I am here in a personal capacity, different from everybody else here, in that my sister is the mother of Rory and of Kathleen. I pay tribute to Ciarán and Orlaith, and to Kathleen who is here behind me in the Gallery. Rory was her brother and her closest friend. He was her wonderful, amazing friend. Ciarán and I have different politics but Rory was very alert at 12 years of age and many a debate we had about Irish politics and where Ireland was going and where America was going. We agreed on people such as Bill Clinton.

Rory was an amazing person who brought light to his peers. He stood up and fought in his school for children who had disabilities. He insisted on equality and fairness in his life. I know that Kathleen, his sister, also has these qualities. Kathleen was speaking to my grandchildren last week telling them about Rory. They wanted to know where Rory is now. We know he is here, as are all of the people who have passed due to sepsis. They are all here because we have accountability and responsibility for them.

This is my role here today. I am not a member of the committee but my voice is loud and clear on this issue. I support fully the actions to be taken by the committee and the Joint Committee on Public Petitions and the Ombudsmen to ensure that all of the political parties in the coming election sign up to a programme, if we can put one together. If we all agree it, we can make it happen.

Our Lady of Lourdes Hospital in Drogheda, when it became aware of Rory's passing, met me and others. Every year, it runs a sepsis awareness campaign. Initially it was for a week. Everywhere in the hospital there are murals and paintings and there are people to advise on what sepsis is to make every person who visits the hospital aware of the evil that it is.

I will quote Senator Chuck Schumer, who is still the majority leader in the US Senate. He told Ciarán and Orlaith that rather than curse the darkness, they lit the light. Rather than curse the darkness, Karen, Joe and the Irish Sepsis Foundation are lighting the light. It is our job to make sure this flame shines brightly and clearly and dispels all of the myths and untruths so that people get the treatment they need. I very much honour all of the witnesses. The HSE will come before the committee later and we will ask it to explain its ways. It has been a privilege to hear the witnesses and I support them fully.

An Cathaoirleach

That is a lovely way to end this part of the meeting. Let us not curse the darkness. I thank the witnesses for coming before the committee and sharing their stories. As I said at the beginning of the meeting, I have a personal involvement and I have been on the journey. I had a near-death experience and people are never the same afterwards. I did not realise that for every hour of having sepsis, there is an 8% chance of dying. I was in the hospital for days. I went home after an operation and my body had started to close down. My face was roasting. My feet, hands and everything were going cold. I went to the emergency department and I was told I looked very healthy and there did not appear to be anything wrong with me. Then there were bells and whistles and I woke up on the ward. People asked me different questions such as whether I had been abroad. I had recently been in Tanzania with an Oireachtas committee. I was told that perhaps it was malaria. They did tests for that and all sorts of other tests. All the time, I was dying. I remember being awake one night and I knew I was dying. You just have to dig deep. As Mr. Callaghan said, you are never the same. I hope, as people are expressing their views here today, that we can move this on. Collectively, we all feel that we could do more on it. This will put big pressure on the next group coming before the committee, and rightly so. Perhaps we can attach a bit more urgency to the issue.

We are talking about a campaign in the second quarter of 2024. If we can bring that back a bit, we can possibly save some of the lives we are talking about here today. I thank the witnesses for their involvement this morning. It was really powerful. I appreciate they had to come in and relive the difficulties they have been through as families and individuals. There are probably many more people out there listening today. Today is not only about getting action. It is also about giving information to people out there. That is useful as well. I thank everyone very much. I will suspend the meeting until the next group comes in.

Sitting suspended at 11 a.m. and resumed at 11.11 a.m.

An Cathaoirleach

The committee will now resume its consideration of sepsis awareness, prevention and associated services. I am pleased to welcome from the HSE Dr. Colm Henry, chief clinical officer, Dr. Orla Healy, national clinical director for quality and patient safety, Dr. Michael O'Dwyer, national clinical lead for the sepsis programme, and Dr. Ciara Martin, national clinical adviser and group lead for children and young people.

I will read a note on privilege. Witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against a person or entity by name or in such a way as to make him or her identifiable or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. Therefore, if their statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

I invite Dr. Henry to make his opening statement on behalf of the HSE.

Dr. Colm Henry

I wish the Chair and members of the committee a good morning. I thank them for their invitation to meet the Joint Committee on Health to discuss awareness, prevention and services for the treatment of sepsis. I thank and acknowledge the important contributions made not just this morning but by the Irish Sepsis Foundation, the End Sepsis campaign and Lil Red’s Legacy Sepsis Awareness Campaign, some of which we have had contact with in recent months. I commend the very impressive testimonies and stories from patients, which they were brave enough to share with us this morning. I am joined by my colleagues, Dr. Orla Healy, national clinical director for quality and patient safety, Dr. Michael O Dwyer, national clinical lead for the sepsis programme, and Dr. Ciara Martin, national clinical adviser and group lead for children and young people.

Today, I will present under the following headings around increasing awareness of signs and symptoms, prevention and appropriate management of sepsis through: implementation of national clinical guidelines; education and training of staff; audit, quality assurance and governance; increasing public awareness of sepsis; and the five-year strategic plan for the national clinical programme for sepsis, including its key priorities from 2024 to 2026.

The national clinical programme for sepsis, NSP, was established in 2014 and the first national clinical effectiveness committee national clinical guideline for sepsis was published. The focus of the programme is to promote the early recognition and evidence-based management of sepsis. Implementation of Sepsis Management for Adults (including maternity): National Clinical Guideline No. 26 is advanced through audit, education, quality improvement and raising awareness.

The national sepsis report for Ireland is published annually by the national clinical programme for sepsis. The report highlights the burden of sepsis in the acute settings and its associated mortality rates. The National Sepsis Report 2021 was published in March 2023. The key finding in that report was a 22.3% reduction in age-adjusted mortality from sepsis or septic shock since 2011 in Ireland. The overall reduction has been contributed to by development and implementation of the sepsis management for adults, including maternity, guideline of 2021 and implementing the national implementation plan for the International Guidelines for the Management of Septic Shock and Sepsis-Associated Organ Dysfunction in Children, which provides a standardised approach to the recognition and management of sepsis in Ireland. The increased knowledge and awareness and action of healthcare staff was the key driver behind these improvements in care.

Accurate reporting of sepsis epidemiology has been complicated since 2020 with the emergence of the Covid-19 pandemic. In addition, the mortality rates of patients with sepsis from SARS-CoV-2 were higher than in patients with sepsis from other causes, as we have outlined in our national report. Furthermore, as the pandemic has waned, there have been some poorly understood changes in sepsis epidemiology, including the global increase in invasive group A streptococcus infections, which we have also noted in Ireland. Notwithstanding these recent changes, mortality rates from sepsis have decreased since the inception of the programme in 2014 from 20.3% in 2020 to 19.0% in 2021, which are the published data available. It is expected those data will be published for 2022 before the year end.

Regarding education and training of staff, in 2015, a nationwide education campaign was commenced for relevant healthcare workers in acute hospitals as part of the implementation of the guideline, and in 2016, we noticed a 67% increase in documented cases of sepsis or septic shock.

E-learning modules are available on HSeLanD, the online learning and development platform, for all relevant staff on adult, maternity and paediatric sepsis. Regular education sessions on signs and symptoms of sepsis and the sepsis 6 bundle are conducted across all hospitals throughout the year with audits to assess adherence to recommendations. In June 2023, the programme conducted a qualitative survey on sepsis awareness and management in acute settings, which was completed anonymously by a large volume of clinical staff. The survey analysis and results indicate that there is a high uptake of the e-learning training module on HSeLanD.

The national clinical programme supported the establishment of a pilot project to introduce sepsis recognition and treatment for GPs. This project is progressing and is developing many resources for GPs across the country such as, for example, a quick reference guide for GPs on the recognition and treatment of sepsis in adults, which will be ready for implementation in quarter 2 of 2024. Other education and training opportunities have been provided to GPs, such as a recent webinar on recognising sepsis with more than 1,600 GP attendees. Other resources include supporting the integration of software to GP clinics to aid with sepsis awareness and management and education and awareness activities increase during Sepsis Awareness Month.

With regard to sharing expertise through events, the seventh sepsis summit took place in Dublin Castle on 19 September. This year’s summit had a global aspect with international experts and family advocates among those presenting. Some 500 health and social care professionals and almost 100 members of the public attended the event. The summit heard from a range of speakers on the latest scientific research and the impact of the Covid-19 pandemic on sepsis care. Topics covered included improving early recognition of paediatric sepsis, the role of technology in sepsis diagnosis, the importance of antimicrobial stewardship and many more. The NSP invited public awareness champions and groups such as the Irish Sepsis Foundation and Lil Red’s Legacy Sepsis Awareness Campaign to the event and afforded them the opportunity to promote awareness at the event.

With regard to increasing public awareness of sepsis, a variety of resources were developed and widely distributed to all hospital groups, community healthcare organisations, CHOs, primary care and the GP network via the HSE and Children's Health Ireland, CHI. Communication links including animated paediatric videos and social media cuts and are currently being played in waiting rooms and public areas in all CHI hospitals and other clinical areas. These can be accessed via the link in the witness statement. Posters and credit cards with signs and symptoms of sepsis for both adults and children are widely distributed at sepsis awareness days and events and displayed locally in each hospital.

In 2023, a new sepsis information leaflet was developed, and I acknowledgment again the Lil Red's campaign, which was central to its development, to raise awareness of the signs and symptoms of sepsis in the community for adults, maternity and children and to provide advice on how to reduce the risk of developing sepsis. The leaflets were distributed to 1,700 GP surgeries and more than 1,800 community pharmacies and are translated into ten languages. Currently, all emergency ambulances carry signage on the signs and symptoms of sepsis and in the future, all National Ambulance Service, NAS, vehicles will carry this signage.

September was Sepsis Awareness Month, with World Sepsis Day recognised on 13 September. Many events and initiatives took place across our health service to mark World Sepsis Day. These included public awareness stands, staff education sessions, the provision of sepsis leaflets and the lighting up of public buildings. As part of our engagement with the media, we worked closely with patient advocates to highlight the symptoms of sepsis. All hospitals had information stands with pull-up banners and provided education to staff and the programme liaises with universities and schools and relevant charities to provide education services.

Regarding the national public awareness campaign, the HSE and national sepsis team are currently scoping out the optimum approach to a public awareness campaign to raise awareness of the signs and symptoms of sepsis and what action people should take if they suspect sepsis. It is envisaged that by increasing awareness of sepsis, the public will seek treatment earlier and, therefore, there will be a reduction in mortality associated with sepsis.

This new campaign is currently in a data gathering and research phase and will undergo engagement with families affected by sepsis and healthcare practitioners in the coming weeks.

Turning to quality assurance on the recognition and management of sepsis, retrospective audits against the national clinical guideline have been undertaken annually since the inception of the guideline, with the exception of 2020 and 2021 due to staff redeployment. Concurrent medical and surgical audits have been completed in all acute hospitals in 2023. Key learnings from the audits are used to improve care in the early recognition and management of sepsis. Paediatric audits will be completed by the end of the year, while maternity audits are scheduled are 2024. More than 95% of hospitals have a deteriorating patient committee, which includes sepsis. The national report for 2022 will be published in the coming weeks.

Regarding the five-year strategic plan, the national quality patient safety directorate and the clinical programme for sepsis have identified the priority areas for inclusion in the five-year sepsis strategic plan for the HSE. The plan will build on and enhance the existing priorities and work of the programme. The sepsis programme plan with clear objectives and outcomes for 2024 to 2026 will be completed by the end of this year.

Key priorities for the years 2024 to 2026 include addressing women’s health through sepsis awareness in pregnancy and post pregnancy, including the development of a public awareness campaign; the development of a quick reference guide for GPs on sepsis in children; a scope project on developing a flag system to be incorporated in all GP systems; the introduction of new metrics regarding sepsis governance, audit and education in acute hospitals to streamline deteriorating patient and sepsis programme key performance indicators, KPIs, and governance structures; and the development of a proposal to engage with academic and research partners to develop a research strategy for sepsis.

An Cathaoirleach

I thank Dr. Henry.

Deputy Róisín Shortall

I apologise but I will have to leave shortly because I am due to speak in the Chamber.

I welcome the witnesses. They will have heard the harrowing stories we heard in the first part of the meeting. We were all taken aback at the shocking numbers of patients developing sepsis and the very high death rate from that. It is especially traumatic for families where a loved one dies in circumstances that are preventable, and great credit is due to the families who are attending this meeting and, indeed, the support organisation for trying to raise awareness of this issue.

All the witnesses who earlier appeared before the committee were exceptionally critical of the circumstances that exist within the health service. We want to address that, and we hope this will be a turning point for sepsis and the country's performance in regard to sepsis. It is an issue we are all keen to stick with and see through to achieve huge improvements. Some of those improvements were outlined to us earlier by the Stauntons in respect of the incredible work that they have done in the US, the Rory Staunton law that was introduced in the New York and the fact those changed arrangements, and the protocol in particular, have resulted in saving approximately 20,000 lives, which is a fantastic legacy.

How can we do something similar here by learning from what was done in New York and introducing that kind of protocol that will change the whole approach, not only among healthcare staff but also in terms of public awareness and training for healthcare staff? I was disappointed to hear about the level of public awareness, which is so important. The families told us earlier about how they had a battle with healthcare staff in regard to their family member to get them to consider the issue of sepsis. They were brushed aside and their concerns were dismissed. How are we to put the issue, or the possibility of sepsis, front and centre when a person with serious conditions within a hospital? I am concerned to hear the HSE is only at the point of scoping out the public awareness aspect at this stage. How can HSE learn from what has been achieved in New York and what is it doing to put in place those kinds of safeguards?

Dr. Colm Henry

Further information for healthcare workers in acute hospitals and in primary care is a priority, and that begins with setting standards, measuring outcomes against those standards and ensuring people are adequately trained. I might ask Dr. Healy to address how we stand against the measures introduced following the intervention of the Stauntons in New York.

Dr. Orla Healy

Indeed, Mr. Staunton addressed our sepsis conference in September, and we have compared and contrasted the interventions in New York state in Rory's law with the actions that have taken place in Ireland. A sepsis guideline, which is a mandated guideline, was developed through the national centre for clinical effectiveness, dating as far back as 2013, and it has been continuously updated. In addition to that guideline, we have early warning scores in this country and they too are mandated. As part of the guideline, mandatory training for relevant staff was instituted, so doctors and nurses in our system are mandated to be trained. Many of the provisions made in Rory's law, therefore, are in place in this country, albeit under a different framework.

In regard to public awareness, the priority for the programme at the outset was addressing the area where mortality was highest, namely, the acute hospital setting. As was stated in the opening statement, there is a documented reduction in mortality of 20% since the introduction of the guideline and the mandatory training. Lest the perception be that all sepsis is preventable, regrettably, it is not, and I will allow my front-line clinical colleagues to discuss that in more detail at a later stage. There has been a reduction in mortality in the acute hospital setting, addressing areas where early intervention had the potential to impact on outcomes. Following on from acute hospitals, we moved on to GP awareness, and that GP quick reference guide is nearing completion.

In regard to public awareness, the next priority, that is well under way-----

Deputy Róisín Shortall

Okay, we have heard that. The HSE is at the scoping stage, which seems incredible at this stage of people's awareness------

Dr. Orla Healy

I have the timeline for that media campaign and it is going to the media company in December-----

Deputy Róisín Shortall

I will come to those. I am asking about this one. I want to go through these. I know there are other priorities. Is having a publicly funded research nurse in every hospital possible and is it on the agenda?

Dr. Colm Henry

It is certainly on the agenda, but as regards the hierarchy of priorities for preventing sepsis and intervening earlier, the education, training and awareness piece is a higher priority.

Deputy David Cullinane

Okay. Questions were raised about the effectiveness of the mandatory national guidelines and whether they need to be reviewed. Certainly, the feedback from the conference was that they do. Is that a priority?

Dr. Colm Henry

All guidelines are continuously reviewed. I will ask Dr. O'Dwyer to briefly describe the reviews since the document was first produced in 2014.

Dr. Michael O'Dwyer

In 2014 when our national clinical guidelines were produced, it was not done solely in Ireland. We collaborated closely with international colleagues and the international Surviving Sepsis Campaign, specifically. It provides guidelines for the treatment of sepsis and we adopted most of its recommendations. That is what is in the national clinical guidelines which follow the international best evidence. Those guidelines are reviewed every two to three years. Sometimes supplementary material is added, for example, around Covid-19, which brought with it a pandemic of sepsis. There were different suggestions about how to treat Covid-related sepsis. We tried to get those guidelines out to the hospitals at the time. Our guidelines are guided by international best practice.

Deputy David Cullinane

It is every healthcare worker's duty to be aware of sepsis because it can present at any time anywhere and in unpredictable, sometimes atypical ways. I will ask Dr. O'Dwyer to address the Deputy's question about the different healthcare workers and what we are trying to do to direct training and raise awareness.

Dr. Michael O'Dwyer

On the in-hospital piece, we have a model for adult sepsis and one for paediatric sepsis and all medical and relevant staff must take that module and get it signed off on their employment record. That is currently monitored at local level but we will bring it to national level next year.

We do not have enough GPs per head of population. We have a plan in place to draw level with the Scottish ratio, and we have a geographical disparity in GP provision. One issue I wanted to raise is that in our messaging rarely do we deal with issues in isolation in healthcare and medicine. One of the issues we also want to convey, which is a very important part of preventing sepsis, is that we do not take actions at a population level to promote antimicrobial resistance. We also have to convey a message to people that common viral illnesses do not merit antibiotic provision. We measure through our local hospital and through GPs how often we use antibiotics and whether usage is going up or down. We have seen in recent years a drop-off in those resistant bugs such as methicillin-resistant staphylococcus aureus, MRSA, and vancomycin-resistant enterococci, VRE, and others through more prudent use of antibiotics. The message we give is we want to increase awareness of sepsis and we want early intervention to promote better outcomes but on a population level we do not want people to resort to antibiotics for every single potential infection that is there, especially viral infections which do not warrant antibiotics.

With the greatest respect, a member of my family passed away five weeks ago. When being discharged from the acute system, he said he had overcome a lot and that he had cancer a few years ago. You could see people's jaws drop because they did not know this man had the type of cancer he had.

We are not medical people; the medical people sit across from us in a hospital environment. You depend on those questions to elicit information. Someone might not think it is relevant, seven or eight years on, to say they had sepsis. Yet, it is a scientific fact that 40% of people who have had sepsis will have repeat sepsis so surely it should be a mandatory question in the triage. You will not always elicit the information unless it is explicitly asked. I am no medical expert but surely if we are upgrading the protocols every two years that should be a mandatory question for whoever is in the room.

An Cathaoirleach

It is a fair point if it was a question of ticking boxes, bearing in mind the number of people who are getting sepsis. Maybe that is something we can follow up on.

Senator Eugene Murphy

I appreciate the Cathaoirleach letting me in because I am not a member of this committee but I am a member of the Committee on Public Petitions and the Ombudsmen and we have discussed sepsis there. While watching and contributing to another committee meeting this morning, I heard part of Dr. Henry's address. I want to ask about children, particularly those with disabilities, who have lost their lives from sepsis. I will not mention any cases but I have a particular case which is heartbreaking, because the parents are left behind. Are there special teams in the hospital for where a child is not able to tell a parent they have a sore throat or chest? Do we have special teams that can communicate with the family on this?

Dr. Colm Henry

I will ask Dr. Martin to answer as she is a front-line paediatrician in CHI.

Dr. Ciara Martin

Paediatrics looks after children from zero up to 16. For a number of the children and babies who come in, you cannot ask the same questions you would ask of an adult. When children come into paediatric departments and they are seen by the specially trained nurses and doctors, there are teams that are trained and you are trained to listen to the parents, look at the child and understand the vital signs and what they mean. Sometimes we need to hold onto a child for a little while to observe them and see how they are getting on. We need to see if they are sleeping and feeding or if they seem to be in pain. The answer to the Senator's question is that it is part of our training in paediatrics. Disability is a particular area where that comes into play because the children of seven or eight who may have an intellectual or physical disability need special consideration, and that is always part of our approach.

Senator Eugene Murphy

I know that when kids are young and they get sick, parental instinct should never be overlooked. I was glad to hear Dr. Martin mention that earlier because parental instinct is important to me. We all have to accept that the medical people are the experts but maybe parental instinct is not always taken into account and something that should have been treated on day one goes into day two. Sadly we have the loss of life of a little girl as a result, which caused great grief to the parents and all left behind. Do we get involved with parents enough and take enough account of parental instinct? I will not mention any case but I hear back from these people is that on the first evening, while the hospital tried to help out, it did not seem to be on top of it. On evening two, the parents will say that it was colossal and that a great many people were involved in trying to save the child. Sadly it was too late. There might be a feeling out there that parental instinct should be at the top of the list when people arrive at a hospital in this situation, particularly a child with a disability who is not able to tell their parents or anybody else they have a sore throat, pain or whatever.

Dr. Ciara Martin

I agree.

An Cathaoirleach

I have a few questions. A question was asked about blood tests and if sepsis would show up on a blood test. People are looking for simple steps that can be taken with sepsis. The witnesses might expand on what they said earlier on that. I know there are all sorts of challenges around it but some families have said to me that if a simple blood test had been carried out early on then that might have been the solution to it. Is it that simple or can other steps be taken with this issue?

Dr. Colm Henry

I will ask Dr. O'Dwyer to come in on this. He has addressed this earlier, in that the Holy Grail is a single test, which does not exist, but there is huge international collaboration.

Dr. Michael O'Dwyer

The diagnosis is incredibly complicated. The gold standard test is a blood culture test. A sample of blood is taken and you look for bacteria within that blood culture. We know that in patients who almost definitely have sepsis, that is only positive in about 40% of cases and it takes 48 hours or so to become positive, so it is not of any use when the patient comes in the door. Then there is a combination of different blood tests to look at the patient's immune response that can give an indication that something is going on but it is not definitive for sepsis. I go to conferences every year and a new test comes out every year but it is never proven robust in big clinical trials. Like we have said earlier, the easiest thing is to give everybody antibiotics when they come in the door. We cannot do that because of emerging antimicrobial resistance and allergic and adverse reactions. The solution to the diagnosis issue has been sought for many years and we are getting closer. The diagnostics are better but they are nowhere near perfect.

An Cathaoirleach

I am conscious that there is a public information element to this in the symptoms that people get. These include low blood pressure, fever and increased heart rate. Further, Lil Red’s Legacy Sepsis Awareness Campaign talks about shivering fever, feeling very cold, extreme pain or discomfort, pale or discoloured skin, being sleepy and difficult to rouse, being confused, feeling like you might die and being short of breath. That is not to frighten people at home or to make them think their child has that. If someone has a sense of something and they know their own child, they might tick one or two of those boxes. Is there anything the witnesses would like to add to that?

Dr. Colm Henry

There are two elements to this. The distinct transition from childhood to adulthood is not exact. There are different types of presentations, from children to adults, and Senator Murphy has highlighted the challenges among disabled children. In the interests of the public information exercise the Cathaoirleach mentioned, which is appropriate, I will ask Dr. Martin to comment on the signs or symptoms that parents might want to look out for and then Dr. O'Dwyer might describe how it is a little bit simpler in the adult world, although it is still not exact.

Dr. Ciara Martin

Public awareness is extremely important but it is also hard. We are sitting here saying sepsis is difficult to diagnose when you come into a hospital, even with laboratory tests. To put pressure on parents to be the diagnosticians is wrong. What we have done and what we are doing, including with Lil Red’s Legacy Sepsis Awareness Campaign, is highlighting to parents when they should seek medical help and when they should worry about their children, particularly in children as Dr. Henry mentioned. It is different if you have a baby. We say to pay attention and that if they have a fever you need to go and seek help, particularly if the temperature is over 38°C or 38.5°C. When it comes to whether the baby is feeding or vomiting or has wet nappies, that can be a lot of different infections, from a respiratory syncytial virus, RSV, infection to an early sepsis infection. A lot of it is helping parents understand what to look out for. We have a lot of information on mychild.ie for families to look at and in recent years we have tried to improve that to say on the website what there is to worry about for children.

It was a good exchange of ideas. Many things came out of this meeting. I hope we can inject greater urgency into it. I thank the families and organisations that came in, as well as the representatives of the HSE for their assistance to the committee on this important matter. It is useful for people. There is a public element to this.

The joint committee adjourned at 12.26 p.m. until 9.30 a.m. on Wednesday, 22 November 2023.

Joint Committee on Health díospóireacht - Wednesday, 15 Nov 2023

Awareness, Prevention and Services for the Treatment of Sepsis: Discussion

Ms Doireann O'Mahony

Mr. Conor Callaghan

Ms Doireann O'Mahony

Mr. Ciarán Staunton

Ms Orlaith Staunton

Mr. Joseph Hughes

Ms Karen Phoenix

Ms Orlaith Staunton

Ms Orlaith Staunton

Ms Orlaith Staunton

Mr. Ciarán Staunton

Mr. Ciarán Staunton

Mr. Ciarán Staunton

Ms Orlaith Staunton

Ms Orlaith Staunton

Mr. Ciarán Staunton

Mr. Ciarán Staunton

Mr. Ciarán Staunton

Mr. Joseph Hughes

Mr. Joseph Hughes

Mr. Joseph Hughes

Ms Doireann O'Mahony

Mr. Ciarán Staunton

Mr. Joseph Hughes

Ms Orlaith Staunton

Ms Orlaith Staunton

Ms Orlaith Staunton

Mr. Joseph Hughes

Mr. Joseph Hughes

Mr. Joseph Hughes

Ms Karen Phoenix

Mr. Joseph Hughes

Mr. Ciarán Staunton

Ms Karen Phoenix

Mr. Conor Callaghan

Ms Doireann O'Mahony

Ms Orlaith Staunton

Mr. Joseph Hughes

Ms Karen Phoenix

Mr. Joseph Hughes

Mr. Joseph Hughes

Mr. Joseph Hughes

Mr. Joseph Hughes

Mr. Conor Callaghan

Mr. Conor Callaghan

Mr. Conor Callaghan

Mr. Joseph Hughes

Mr. Joseph Hughes

Ms Doireann O'Mahony

Ms Doireann O'Mahony

Mr. Conor Callaghan

Deputy Bernard J. Durkan

Mr. Ciarán Staunton

Mr. Joseph Hughes

Ms Karen Phoenix

Ms Karen Phoenix

Mr. Joseph Hughes

Mr. Ciarán Staunton

Ms Doireann O'Mahony

Mr. Joseph Hughes

Dr. Colm Henry

Dr. Colm Henry

Dr. Orla Healy

Dr. Orla Healy

Dr. Colm Henry

Dr. Orla Healy

Dr. Orla Healy

Dr. Orla Healy

Dr. Colm Henry

Dr. Michael O'Dwyer

Dr. Ciara Martin

Dr. Colm Henry

Dr. Colm Henry

Dr. Colm Henry

Joint Committee on Health díospóireacht -
Wednesday, 15 Nov 2023