Martin Browne (Tipperary, Sinn Fein)
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Our next business is Mr. Joseph Hughes's Petition No. 52 of 2022, Lil Reds Legacy Sepsis Awareness Campaign.

I wish to explain some limitations to parliamentary privilege, and the practices of the Houses with regard to references you may make to other persons in your evidence. The evidence of witnesses physically present, or who give evidence from within the parliamentary precincts, is protected pursuant to both the Constitution and statute by absolute privilege. Witnesses are again reminded of the long-standing parliamentary practice that they should not criticise or make charges against any 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, and it is imperative that they comply with any such direction.

Before we hear from our witnesses, I propose that we publish the opening statement on the committee's website. Is that agreed? Agreed.

On behalf of the committee, I extend a warm welcome to Mr. Joseph Hughes, to discuss Petition No. 52 of 2022, entitled Lil Red's Legacy Sepsis Awareness Campaign. Mr. Hughes is accompanied by Doireann O'Mahony of the Irish Sepsis Foundation. Mr. Hughes will read out the opening statement, and I suggest that he should make it for around ten minutes. We will then have questions and comments from members, and I would ask each member to stick to around ten minutes, which will let members come back in a second time.

I invite Mr. Hughes to make his opening statement.

Mr. Joseph Hughes:

Sean Hughes, also known as Lil Red: sunrise, 3 July 2002; sunset, 12 January 2018. From the first breath taken, you have always been an inspiration.

Sean was an up and coming rap artist who wrote and performed all his own songs and wrote his own material. He performed in the Aviva Stadium, Croke Park and the National Concert Hall, just to name a few venues. Sean's music can be heard on Facebook, SoundCloud and YouTube. He was a very fashion-conscious young man. He loved dressing in the latest designer brands. Friends of Sean's have called him their role model. He was quick to help others and we are very proud to call him our son.

Sean had no underlying health issues. He was a healthy lad. On Friday morning, 12 January 2018, we lost our amazing son Sean due to sepsis. He was only 15 years old. We never heard of sepsis before it took Sean from us.

On Monday, 8 January 2018, Sean came home from school and told his mother that he was not feeling very well. He was displaying flu-like symptoms, which were similar to symptoms of a chest infection: a persistent cough, a crackling sound in his chest, breathlessness, shallow breathing, aches in his muscles and a high temperature. On Tuesday, 9 January, he was feeling slightly better. The next day, Wednesday, 10 January, Sean’s mother Karen took him to the family doctor. The doctor examined and treated Sean for a chest infection with flu-like symptoms, and prescribed him antibiotics. The doctor stated that Sean had a high fever and a very bad chest infection. She was concerned that it might progress into pneumonia. The GP sent Sean home. Karen started Sean on the antibiotic. He was coughing up a lot of phlegm. Sean could not sleep at all that night.

On Thursday night, 11 January 2018, Sean was sitting on the sofa in the living room watching television with his mother. Karen was talking to Sean one minute and the next, he was unresponsive. Karen called for me, as I was upstairs. I ran down the stairs and saw that Sean was unresponsive and not breathing. I immediately removed Sean from the sofa and placed him on the floor. I checked his airways and began cardiopulmonary resuscitation, CPR. Karen phoned the ambulance. I continued to do CPR until the paramedics arrived. They took over and asked us to wait out in the hall. They asked us if Sean took anything, and we said just his antibiotic. They asked if Sean had any underlying health issues. We answered no. They told us that they were going to take Sean to the hospital. The paramedics put Sean on a gurney, took him into the ambulance, and brought him to Temple Street Children’s University Hospital in Dublin at 12.20 a.m. We followed in our car as they would not allow anyone to go in the ambulance with Sean.

The doctors in accident and emergency at Temple Street went to work immediately, assessing and examining Sean. We were asked to wait in the family room, and we were kept updated. Again, we were asked about Sean’s medical history and if he had any underlying health issues. Again, we said no; he was a fit and healthy lad. The doctors in the hospital were baffled. They had no clue as to what was wrong with Sean. One doctor told us that if Sean was to survive, there would be some damage to his brain as a result of the lack of oxygen. After a while, we were told that the doctors wanted to do a MRI scan on Sean and move him up into the intensive care unit. They also mentioned that we might like to have some family and friends around us. They said that all indications were that Sean will not pull through, and that it was only a matter of hours until he passed away. Sean passed away on Friday, 12 January 2018. He was six months away from his 16th birthday, and our world would never be the same again.

We were officially informed at Sean’s inquest that the cause of death was sepsis. We had never heard of sepsis before this. We were never educated on the killer called sepsis, which stole our son’s life. At no time was the word sepsis mentioned to Karen or me by the family doctor, the paramedics or the hospital doctors. We are educating ourselves about sepsis, and we are shocked at the low level of public awareness in Ireland around this global medical emergency. Early recognition and rapid treatment is the key to surviving sepsis. There are eight deaths every day in Ireland from sepsis. Any infection can lead to sepsis. There are almost 15,000 cases of sepsis recorded in Ireland every year, resulting in an average of 3,000 deaths. Sepsis kills more people in Ireland every year than breast cancer, prostate cancer and AIDS combined. Sepsis does not discriminate on the basis of age, gender, or strength. Where is the awareness? Lil Red’s Legacy Sepsis Awareness Campaign and members of the public who have signed the petition are asking the Minister for Health, Deputy Stephen Donnelly, and the HSE’s national clinical programme on sepsis to produce and fund an advertisement on Irish national television showing the public how to recognise the symptoms of sepsis.

When we met with the previous Minister for Health, Deputy Simon Harris in late 2019, he gave us an assurance that funds would be allocated in the Budget to ramp up public sepsis awareness. He also requested the members of the HSE’s national clinical programme on sepsis who were present at the meeting in Leinster House to keep us updated on their progress. The Minister, Deputy Harris, also mentioned at the meeting that a sepsis awareness initiative would be rolled out to schools. Unfortunately, none of this was followed through. The Minister, Deputy Harris, left his role as Minister for Health in June 2020. The present Minister of Health, Deputy Stephen Donnelly, has very unfortunately, for one reason or another, not had a meeting with us so we could discuss public awareness. The national clinical programme on sepsis failed to follow up and keep us posted.

In a letter forwarded to us by the petitions case manager, dated 9 December 2022, Mr. Ray Mitchell, the HSE's assistant national director of parliamentary affairs, said that the priority is to continue the focus on the sepsis awareness campaign in September, and that the programme will, in 2023, monitor how the campaign is run to establish their effectiveness and future type campaigns. In another email dated 19 October 2022, again forwarded by the petitions case manager, the same Mr. Ray Mitchell stated that the programme is applying for additional funding to develop a national television programme. We have had two emails saying that they are going to do it, but in the last email they came in said no, that they are only going to concentrate their efforts on September, which is World Sepsis Awareness Month, and 13 September is World Sepsis Day. The HSE thinks that just for that four weeks of the year, in September, they are going to concentrate on that alone. What about the other 11 months of the year? It is shocking to see, now that we know that sepsis deaths are preventable, and all it takes is early intervention and rapid treatment.

Martin Browne (Tipperary, Sinn Fein)
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I thank Mr. Hughes.

Before I call members, I would like to pass our condolences to Mr. Hughes and his family on the death of Sean. Reading the opening statement was frightening. I apologise for the ignorance I had in regard to sepsis. I did not realise the figures were so high.

Mr. Joseph Hughes:

Those figures come from the Central Statistics Office and the Royal College of Surgeons in Ireland. If we were to make those figures up, we would not make them as shocking as the truth.

Martin Browne (Tipperary, Sinn Fein)
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Looking at the symptoms, every one of us has had something like that. It is something to realise it could be something more serious and that it is in many cases. Deputy McAuliffe is here too. He has raised this through parliamentary questions and I thank him for that.

The big concern I have is that so little money seems to be involved here. As Mr. Hughes said, we raise awareness for cancer, speeding and numerous other things, all of which is justified and required. We have eight deaths a day, or 3,000 a year, and so little money is involved but there is not a massive campaign to make people aware of it. I do not like comparing it but if we had eight deaths a day from road accidents, there would be uproar-----

Mr. Joseph Hughes:

There would be, yes.

Martin Browne (Tipperary, Sinn Fein)
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-----if there was not an awareness campaign. I will ask Mr. Hughes more questions later and will let members speak. I ask Senator Murphy if I can call Deputy McAuliffe, since he is here now.

Eugene Murphy (Fianna Fail)
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I was going to suggest it since Deputy McAuliffe knows the witnesses.

Martin Browne (Tipperary, Sinn Fein)
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He is coming in and out from the Committee of Public Accounts.

Eugene Murphy (Fianna Fail)
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That is fine. I will give way to Deputy McAuliffe.

Paul McAuliffe (Dublin North West, Fianna Fail)
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I welcome the witnesses, Joe, Doireann and Charlie. I first met Sean when he was rapping at the Finglas Festival. We had a programme and many kids on and off the stage. Sean's group was so popular that they ran out of time but kept going and going. Of course, we rushed them off the stage. I said to Karen and Joe that I wish I had not rushed them off the stage that day because we did not know how little time he had ahead. I never got to know Sean the way I have Karen and Joe, all the family and all the lads who were friends with Sean. Joe is here today not because of any support I have given him. It was Joe who discovered the petitions process on the Oireachtas website, made the application and had that determination. Anybody who knows anything about sepsis will know that Joe's determination and Karen's patience for Joe's determination have been superb. That comes at a cost for anybody who has lost a child. They are giving time that they should maybe spend on healing themselves so that other people do not go through the same experience.

I pay tribute to Ms Doireann O'Mahony too, who, independently of all that, has seen the pain that many other families have gone through with sepsis and has established the Irish Sepsis Foundation. It will be interesting to hear more about that from her own perspective.

Remarkably, two or three years after Sean died, my uncle passed away with sepsis. His wife did not know the symptoms and was not able to recognise them. With all of the awareness that had been created in Finglas because of Sean's death, one would think that everybody would have good awareness of it, but it is so difficult to spot the signs and symptoms. That is why a public awareness campaign is so important. I acknowledge that the Minister has agreed to meet Joe later this month and I think that is important.

I tabled parliamentary questions in 2018, 2019, 2020 and 2021 regarding what was spent on sepsis. The Cathaoirleach is right that the sum of money involved is very small. There are two elements to this. Small amounts of money are spent on leaflets, t-shirts and stands, but Joe would say that it is hard to see the evidence of where they have been used and what they have been used for. Large amounts of money have been allocated. Last year, €47,000 was spent on a general practitioner sepsis lead for 12 months. In 2019, €87,000 was spent on an e-learning and education system. While GPs have been equipped and awareness created, it is hard for a family that has been so invested in this for the last five years to see the practical impact of this spending and I would like the HSE to explain it. It is not just for Karen and Joe. There is a wider group that Ms Doireann O'Mahony and many other people who have worked with her have established. I pay tribute to all the witnesses for that.

The television advertisement is one symptom of a public awareness campaign. I have no doubt that the witnesses would like to see far more. I see they created their own radio advertisement, which I am sure was expensive for them but would probably be inexpensive for the HSE. Will the witnesses talk to us about the Irish Sepsis Foundation and where they see a public awareness campaign going, including television advertisements?

Ms Doireann O'Mahony:

I thank the Deputy for all the tireless work that he has been doing over the past several years for the Hughes family and for others. Following up on the figures that he mentioned, I would like to add that there are some oddities. For example, the fifth annual sepsis summit cost €1,845 in 2018. The sixth summit in 2019 cost €10,502. It seems like a staggering increase in spending. Further, I see that €27,300 was spent on e-learning in 2021, when €87,950 had already been spent in 2019. That is a lot of funds. For people like Joe and other families, these are eye-watering figures, but we want to see tangible evidence of a commitment to driving meaningful change in highlighting and raising awareness of sepsis. With that in mind, we founded our charity in September last year, which is sepsis awareness month. We are delighted to have Joe and Karen on board as members, in addition to a number of others.

I had the idea for the charity because, in the course of my legal work over the past decade, I saw sepsis recur as a theme throughout the cases I was dealing with. I repeatedly saw cases involving people dying from sepsis. I saw sepsis listed on death certificates and at coroners' inquests. I met people whose lives had been destroyed by this condition. As the Deputy rightly points out, is quite startling when one considers how prevalent it is and how eminently treatable it is. We are not looking for anything ground-breaking here. To be fair to Joe and this petition, we are not asking for the sun, moon and stars. We are not looking for a cure. There is a cure. We are simply looking for awareness among members of the community.

I would like to report to the sixth national sepsis outcome report of 2020, which was published in May last year. On the second page of the report, the authors outline six processes which must occur to give patients the best opportunity to survive sepsis. The first of those is, "The unwell person, their family or carer must be aware of the signs and symptoms of sepsis and the need to seek early medical review." Following from that, we are asking what exactly is being done, if this has been identified year on year by the HSE. Why does sepsis remain this silent killer that nobody knows about until it visits their household?

Regrettably, we as a charity have no funding from the Department or the HSE. We are reliant on the goodwill of people like Joe and the Corcoran family from Cork, who lost Tracey, who would have had her 40th birthday today had she not lost her battle with sepsis in June 2020. We are reliant on the goodwill of people like them to keep this charity going. I am here on behalf of the Irish Sepsis Foundation to lend our voices to the petition. It might be interesting to draw the committee's attention to a comparator, which is Scotland, our neighbour, with a similar population to Ireland, of 5.3 million people and, broadly speaking, the same life expectancy, quality of life, and so on.

In Scotland in 2018, £70,000 in funding was secured. That was given by the Scottish Government and used to deliver Scotland's sepsis charity campaign. Part of the campaign was a television advert, which was extremely effective. The health secretary of Scotland agreed to the campaign in 2017 after meeting a campaigner, Craig Stobo, who had lost his wife, Fiona, and their unborn daughter, Isla, to sepsis, and it was on foot of that meeting that the funding was secured. Subsequently, a survey was conducted in Scotland and 77% of the respondents indicated they understood the signs and symptoms of sepsis after that campaign and television advert. Something similar should occur here. As the Deputy rightly pointed out, it would not cost the Department a huge sum.

Paul McAuliffe (Dublin North West, Fianna Fail)
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To highlight Ms O'Mahony's point, I have heard Mr. Hughes talk time and again about the messages he has received from people who have been affected by his campaign, which, while small, has had a big impact in saving people's lives. Will he give us some examples of the stories he has heard and some idea of how many lives could be saved if we were to hold a national campaign on this?

Mr. Joseph Hughes:

Our campaign is based mostly on social media. We also go to schools and colleges to give the sepsis awareness talk and we have attended a couple of business events. We will go anywhere to spread the life-saving message. At least 30 people have been in touch in the past five years to say their lives or that of a loved one was saved because of Lil Red’s Legacy Sepsis Awareness Campaign. They knew the signs and symptoms, knew to get themselves to a hospital and had the confidence to ask whether it could be sepsis. That question saved their lives and they would not have known about it otherwise.

I am not taking away from the HSE's work, but its representatives told us over and over that they were at the National Ploughing Championships spreading awareness. Where I live, however, nobody goes to the National Ploughing Championships. I was then told that the material is available online, but not everybody is computer literate or has access to a computer or Wi-Fi. We have told the HSE we think it would be a better use of money, energy and time to go to schools, clinics and sports clubs, as we do, and give the sepsis awareness talk there because that is where it is needed. Thirty people's lives have been changed because of what we do.

I would not like to mention names, but one person whose young child was taken into hospital said they were fobbed off and told it was just a stomach bug. They then got a second opinion and it turned out to be sepsis. As we now know, sepsis is very time dependent, which is why awareness is so important to ensure early recognition and rapid treatment. I cannot overemphasise that. The HSE has e-learning and its staff are expected to be up to scratch on what they need to do, but this information needs also to be in parents' hands. Who knows anyone's child better than their mother or father or guardian? The information should be in the public's hands.

Paul McAuliffe (Dublin North West, Fianna Fail)
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Mr. Hughes had some success in obliging some of the authorities to create awareness. Dublin Fire Brigade, for example, has a sepsis information message on the side of its ambulances. The HSE has created an entire campaign in Lil Red's image, with red hair, and that is the basis of some of the print materials. A lot of the material needs only to be scaled up. Is that correct?

Mr. Joseph Hughes:

Absolutely. The material is already there. We worked with the HSE to produce a paediatric video and leaflet. For one of the events we held, we asked the HSE for a number of the leaflets to hand out, but we were told we could print them out ourselves. We went around Dublin, to clinics and doctors' offices, and there was no information. There are boards in hospitals and doctors' clinics and there is information about everything from pregnancy and cancer to headlice and strokes but nothing about sepsis. In light of how prevalent it is, it is shocking there is no information about it. We asked the HSE for some leaflets to hand out at our events but we were told that, while it did not really have many, it had some left over from an event it had held. We were told to come into Dr. Stevens's practice to collect it, so we did, and I was given a box of leaflets. I went around all the clinics in Dublin with Karen and some of our campaign supporters and we filled the leaflet boxes in the clinics, having been given consent and told to go ahead. Now, however, when I go to some doctors' clinics, I see they are left empty, which is a shame because time and effort was put in to fill them and the idea was to have something in them rather than leave them empty. We have produced our own cards, stickers and fridge magnets and we hand them out at our events.

This started in Dublin, but it is throughout Ireland now and is going international too. If we had the resources and the budget the HSE has, we could put that energy into producing a sepsis awareness advertisement for Irish television. Every home has a telly or at least a radio. The radio advert was great and we funded it ourselves. At least at that point, we would have thought someone from the HSE would have reached out to offer help.

The Stauntons, a family originally from Mayo who now live in the US, lost their son, Rory, to sepsis after his elbow was cut. They visited here in December to get an award from the President for the work they do on sepsis awareness in the US. Their foundation commissioned a report that indicated 72% of the Irish population did not know what sepsis was. Why is it such a secret? Why is it not more widely known about? Years ago, it was called drug poisoning, then it was called septicemia and now it is called sepsis. If water is water, it will still be water in ten years. Why change the name of something? Public awareness is the key for early diagnosis and rapid treatment. The treatment for sepsis is not very expensive; it involves antibiotics and oxygen in a hospital setting. So many lives and so much time and energy would be saved by having an advert on the telly.

Martin Browne (Tipperary, Sinn Fein)
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Early intervention is the key. Given how much money would be saved by not letting the infection develop, as well as the potential for deaths and major health complications, that would pay for any campaign, as far as I can see.

Eugene Murphy (Fianna Fail)
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I was saddened listening to Mr. Hughes's story. He was very brave to come before the committee and give such a wonderful presentation, considering he and his wife and family have lost their beloved son. They have my sympathies. They have a really good advocate in Ms O'Mahony, who seems to be so committed and dedicated to this. Deputy McAuliffe and I will certainly bring forward this within our parliamentary party, and I know the Chairman will do likewise with his party, because I fully agree with Mr. Hughes on this matter. It might seem strange to say this, but when sepsis was known as septicemia, more people knew about it. I would have heard my mother and my neighbours talking about it. Nowadays, however, in general conversation I hear people ask what is sepsis. I do not know as much as Mr. Hughes about it, but it seems I often hear stories of somebody who was admitted to a hospital with an ailment and was due to get out in a day or two but, shockingly, dies, and then it turns out to have been sepsis.

That is the reality and it is happening more and more often. Unfortunately, the witnesses are right, many people do not understand what sepsis is. I am sure the Cathaoirleach and all members of this committee will have no difficulty with Deputy McAuliffe saying we will move towards ensuring there is a better public campaign and that we will engage with Irish Sepsis Foundation, ISF, on whatever else it believes should be done. Everything the witnesses say should be taken on board and should be done. I compliment Mr. Hughes on what he has done and Ms O’Mahony on what she is doing.

In regard to the publicity campaign, will the witnesses spread the campaign throughout the country, into schools and communities? I believe that is how to do it, in order that people know exactly what sepsis is and that it can be treated if dealt with quickly. However, as the witnesses said, the understanding is not there. I presume they would like that campaign to be as widespread as possible.

I have one question in regard to the cost of a conference. I see that a display stand and brochures cost €12,100. That is fine, I am not questioning the cost of it. However was that in different locations throughout the country or was it at a show? Have we a breakdown of that figure? It appears here a few times. It is based on a brochure. Was it at a conference or some sort of public awareness campaign that might be in some parts of the country?

Mr. Joseph Hughes:

I would have to look at that again and get back to the Senator about it. There is no breakdown stated.

Eugene Murphy (Fianna Fail)
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That is okay.

Ms Doireann O'Mahony:

I thank the Senator. We do not know but I assume much of that was among HSE staff and personnel themselves. It was learning for the HSE as an organisation rather than public or community awareness. That is my understanding.

Eugene Murphy (Fianna Fail)
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Okay.

Ms Doireann O'Mahony:

As a charity we come face to face with people who have actually had sepsis and survived it. While this is a leading cause of death some people actually survive it but with serious, devastating, life-long complications such as amputated digits and limbs. This has a huge knock-on effect on their lives, their ability to engage in the workforce and their mental health. The broader picture needs to be looked at. What we are asking for is not so great when one considers the cost to the State in terms of inpatient stays for people with sepsis who might spend a couple of weeks in intensive care at huge cost and who might survive it but come out and need rehabilitation on an ongoing basis for the rest of their lives. We cannot lose sight of that.

Eugene Murphy (Fianna Fail)
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I thank Ms O'Mahony.

Ms Doireann O'Mahony:

People from my generation, friends and contemporaries of mine remember the meningitis advertisement in the 1990s and 2000s. That was effective in getting the message across. People knew to look for a meningitis rash and that this was a time-critical medical emergency. They knew about the glass test. We are all familiar with the graphic television advertisements by the Road Safety Authority and for stroke, to act FAST, and heart attack. Sepsis is no different so it is only right that the television advertisement for which Mr. Hughes and Lil Red’s sepsis campaign have been looking for years, should be funded. He makes the point that not everybody has access to the internet and social media. The television advertisement, among other things, will have a mass reach. It will filter into homes throughout the country and it will be embedded into the consciousness of the Irish public.

Martin Browne (Tipperary, Sinn Fein)
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I do not think there is any doubt that the success of the radio advertisement is enough evidence for any Minister or Department to see that advancing it onto national television could have an unbelievable impact. The figures are that annually, 50 million people worldwide get sepsis, of whom 11 million die. Two out of every five cases are children. These are frightening statistics. As a committee we could help by doing a presentation in the AV room. As I said at the start, I apologise for my ignorance of much of it but there are probably other Deputies and Senators in this complex who are not fully aware of how serious it is. Perhaps the witnesses would agree to come in at some stage to give a presentation in the AV room.

Cormac Devlin (Dún Laoghaire, Fianna Fail)
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I welcome the witnesses. Like my colleague, Senator Murphy, I extend my sympathies to Mr. Hughes and his wife, Karen, on the death of Sean. I was not here when Mr. Hughes read his opening statement. Unfortunately, I was detained elsewhere. However, I have gone through it. I am aware that my colleague, Deputy McAuliffe, has raised the issue several times on behalf of Mr. Hughes, and he has also referred to that. That family has suffered a huge loss, which is understandable given the sudden nature of how it happened. As Senator Murphy said, there is not enough known about sepsis, about being in hospital and afterwards, and the detrimental impact that can have on a patient. Today’s forum is good not only for this committee to hear of the experience and the witnesses’ knowledge of the subject but also for us to see where we can assist both the campaign and indeed the work that Deputy McAuliffe has already undertaken. I suggest we invite in the HSE to discuss this matter. Other organisations have been in previously. It is important to keep up the momentum and the pressure. The Minister, Deputy Donnelly, is examining the issue. I have read a number of the responses to Deputy McAuliffe’s parliamentary questions. It is important for the witnesses’ sakes that they see progress made on this campaign, even in incremental steps. I too concur that radio or television advertisements are necessary. Training is also essential for hospital staff in particular. We need to explore the wider implication not just of informing the public but indeed all those within the healthcare sphere. In one of the documents, Mr. Hughes referred to it being the number 1 cause of preventable deaths worldwide. That highlights the impact of the situation here in Ireland. I have no questions per se. The statement covers a great deal of Mr. Hughes’s personal experience. Ms O’Mahony’s responses to questions so far have answered some of the questions I would have asked had I been physically here in the committee room. In order to progress this and to assist the campaign, we should bring in the HSE and ask that, out of its public relations budget, it should allocate something towards a national campaign that would have some impact on the causes of sepsis. I thank the witnesses for coming in today.

Paul McAuliffe (Dublin North West, Fianna Fail)
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I agree with Deputy Devlin's suggestion. As a non-member of the committee, I did not realise we could call in the HSE. That is a clever suggestion.

Martin Browne (Tipperary, Sinn Fein)
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We can call in the HSE. We can do the information session to help move things on. Why has the name of this been changed in the past couple of years? It is now called sepsis. Has anyone any idea?

Mr. Joseph Hughes:

I have a theory. We were saying that people go into hospital and are due to get out in two days' time. The next minute they have sepsis and, unfortunately, pass away within a day or two. These are hospital-acquired infections and nobody wants to raise their hands or to be seen to be saying anything about hospital-acquired infections.

It is something like the boogie man where if one does not see it, hear it or if it is not publicised, it is not there. Myself and Karen go around the schools and sports clubs and we do a great deal of campaigning. We stand in front of the children, young men and women, and say we are just ordinary people, where we could be their mother or father. If somebody was standing in front of our son and was given the talk that we gave; perhaps things might be different. Maybe I would not be here but would be out doing things with my son. There are many “maybes” in it.

My theory is to ask why did they change the name and why do they not want to talk about sepsis; it is because of the high number of hospital-acquired infections and they do not want high figures for that.

Martin Browne (Tipperary, Sinn Fein)
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As has been said, Mr. Hughes, if there is early intervention and signs-----

Mr. Joseph Hughes:

It is a no-brainer.

Martin Browne (Tipperary, Sinn Fein)
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-----there is no need to be in those hospital settings if that is where the infection kicks off.

Mr. Joseph Hughes:

An Cathaoirleach is singing my song and I have been saying that 1 million times.

Martin Browne (Tipperary, Sinn Fein)
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Following on from what Deputy Devlin has said, and this is not a criticism of anyone in the health service, but is it widespread within the health service that this service does not recognise the symptoms of this condition?

Mr. Joseph Hughes:

We are told that sepsis is a six bundle and that there are implementation checklists for the staff as soon as someone has sepsis. I know for a fact that in England the NHS has an app on its tablet where the patient’s temperature and vital signs, such as blood pressure, are recorded. This information will tally up and give the service the possibility to note if there is a high risk of sepsis with a "Yes" or "No", a high or a low recording.

There is nobody who could not do with a little bit more learning about sepsis.

Ms Doireann O'Mahony:

If I could just add to that, a Chathaoirligh, please. That is precisely why we are so pleased to hear that the HSE might be invited to appear before the committee because we are not medical professionals. We are ordinary people and are not really the appropriate people to answer questions like that. That is why it is so important for us that the HSE would work with us. Particularly in the case of Mr. Hughes, both he and Karen have managed to channel their grief over the loss of their son into something so positive over the past number of years with their campaign, and also with their involvement with the charity. For every Mr. Hughes, there are countless other people around the country who have not managed to do that, and who have suffered silently in the background in the throes of grief. We owe it to them.

That is why I feel that it is so important that people like Mr. Hughes should not be kept at arm’s length from the process. He is a person with real lived experience of losing somebody to sepsis. If the HSE plan on using moneys for a purpose, people like Mr. Hughes should have an input and a say as to how the money is used. His stated wish has been for this television advertisement. We are all in agreement that it would be a sensible and cost-effective use of the funding.

The radio advertisement we had on RTÉ Radio 1 in the lead up to Christmas was great. We managed to negotiate a very good package directly with RTÉ and many people heard that advertisement. It generated a great deal of traction through our social media and so forth. It would amplify that so much more if the foundation’s wish was granted and if the HSE came in, sat down, looked Mr. Hughes in the whites of his eyes, and agreed to work collaboratively with him.

Martin Browne (Tipperary, Sinn Fein)
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In the running of any campaign, upon which I believe everybody would be in agreement, one of the striking images from the speed ads, for example, which are on the television is when the family members are actually talking. It is the human factor, like Mr. Hughes's story, which very much hits home to people when they are watching ads on the television.

I have two quick questions before I ask other members to contribute. Is Ms O’Mahony’s foundation State-funded or does it have to fundraise itself?

Ms Doireann O'Mahony:

No. We do not receive any funding. We are in existence since September last year. For about nine months or so, while we were getting up and running, so to speak, and going through the process of registering with the Charities Regulator, we made many attempts to engage with people from the HSE and the national sepsis elearning programme but sadly to no avail. No, we are just volunteers and we have zero State-funding.

Martin Browne (Tipperary, Sinn Fein)
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I congratulate the foundation for the work it does and I would say I am speaking for everybody in saying that. Does Deputy Buckley wish to make a further contribution?

Pat Buckley (Cork East, Sinn Fein)
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My apologies, a Chathaoirligh, but we are being bounced through the committees today.

First, I congratulate the foundation. As I have often said here at this committee; this is a very different committee. It is last chance.com for somebody in the public to have his or her say and we are public representatives. It is our job and duty to listen to people but also then for them to have their own voice.

The point I would make, and I have said this across many campaigns, is to get the information out there. When this petition first came in to the committee, I said to myself that everybody knows about this, but they do not. My wife will kill me when I say this but prevention is better than cure. One does not have to elaborate on that statement.

Bringing the HSE before the committee is a great idea. We have always had an issue with many Departments in respect of accountability and oversight, or being able to get the right actual response to the question asked.

On a further question, which I am unsure if it has been asked already, but I ask about the disparity with respect to the letter supplied by the Department of Health in the figures or on the amount spent on the sepsis awareness campaign, and the fact that the two figures were very different. We are audited here and are fairly diligent when it comes to that. I again mention that because we are now talking about accountability and oversight. In the seven years since I have been here, and in my previous experience with town and county councils, the words which come up here all of the time are “accountability”, “responsibility”, and the final ones are “to be held to account” and it is there that this breaks down. It is so difficult to help people in this country because each and every Department makes it so difficult for people, such as our witnesses, to come inside and to enter into their patch. As they are now encroaching on it, and the first thing the Departments do is to put up their defensive wall. I know that when the issue is personal there is a stronger drive, but I will give the best example I can.

A good number of years ago I lost two brothers to suicide in the space of 16 months. The health system was crap and the coroner’s system was very poor. The courts were an absolute disgrace and after-care was not existent. When it is personal, one wants to make all the positive changes so that somebody else will not go through the same grievance, inconvenience. One scratches one’s head to say that no one else needs to die if it is done right. That is why I was mentioning the three points to our witnesses, where when one is trying to help people one meets a resistance. It is just mind-boggling.

I will finish on this point. I very much support bringing the HSE before the committee to ask the hard questions. At least, at that stage, we would get, I hope, some bit of accountability and the foundation might be able to move things forward a great deal faster. This is something that should be out there in the public domain. This is a preventive measure which is much cheaper and causes a great deal less grievance within families who are going through stuff like this.

We will not have to ask questions like this anymore as it will be dishing out good information and giving people answers. This is the way it should be going. I just want to say congratulations to the campaign group. I apologise again for being late but I do read my notes. It just goes to prove that. We get caught between committees. I thank Mr. Hughes very much.

Cormac Devlin (Dún Laoghaire, Fianna Fail)
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I wish to go back to one of the responses that Deputy McAuliffe received in the context of the awareness campaign and the funding the HSE says its spends on sepsis awareness: in 2018 it was €16,500; in 2019 it was €130,000; in 2020 it was nearly €3,500; in 2021 it was €27,300; and in 2022 it was €51,000. In the response received from the HSE it breaks down the amounts spent in those years. I notice it funded a national sepsis summit with €1,800. I note also from research that there was a sixth summit held on sepsis in 2019, but the HSE does not appear to have funded it or it does not include it in its funding.

Is Mr. Hughes aware of, or was he given information or is he satisfied, with the information produced by the HSE on awareness of sepsis? I am looking here at €12,000 spent in 2018 on a display stand and brochures. Going back, there is also e-learning support of €87,000 in 2019. These are quite considerable sums. Television advertising is expensive as are radio and national campaigns, but perhaps the information around sepsis and the awareness campaign it is currently undertaking is not satisfactory and is not reaching the cohort.

Mr. Hughes mentioned talking to youngsters in clubs and in sports organisations. If all of that money is being spent by the HSE but is not aiming for its intended target about raising full awareness, then apart from just a national TV or radio campaign, what else can be done? If we as a committee are to write to the HSE and ask it in here to include and to mobilise Mr, Hughes's suggestions around a proper campaign, it would be helpful for us to hear Mr. Hughes's thoughts about the existing campaigns and the vast amount of money the HSE is spending. Perhaps Mr. Hughes will come back to me on that.

Mr. Joseph Hughes:

Karen and I attended the sixth national sepsis summit. Upstairs we were allowed to put out our own pull-up banner, which we paid for ourselves - it was not bought with that money. At one stage I was on record as saying that in our house there was more sepsis awareness material than anywhere else in Ireland. We printed our own leaflets and we paid for our own pull-up banners and t-shirts. We did not have any of that budget.

With regard to the e-learning, I did that myself on the HSE website and I got the certificate for it. If I can do it then anybody can do it. There is a Facebook media spend listed there as well but our campaign, which I do, is more concerned with the social media that does not cost anything. There are differences around what we spent and what was spent on there, according to the two sets of correspondence that I got from the HSE and Deputy McAuliffe. Their sepsis awareness campaign was €30,000. One of the things we can see listed is the sepsis awareness month and world sepsis awareness day public awareness activity to promote awareness of the signs and symptoms. Any time I looked online to see what was being done by the HSE, and around Ireland, on world sepsis day the vast majority of the hospitals had banners that they had made themselves using crayons or markers. They would not have spent money on that and it would not cost much.

The HSE had also appointed a new national sepsis programme manager. I will bring the committee back. When Sean passed away we did not know anything about sepsis. The first thing we did was go onto the HSE website to find out what we could about sepsis. Lo and behold, we found out that there was a national sepsis programme, and there was a name given for the contact. We tried to contact this email address half a dozen times but no email came back. I was a bit frustrated so in the end asked if someone would please answer me. The response I got was that there was nobody in that role. It was still up on the website, however, that this person was still in that role but she was not.

A new programme manager was appointed, Ms Ciara Hughes, and we met with her. Looking back at it now it feels as though they threw the dog a bone and they were keeping me quiet. We sat down and developed some paediatric sepsis awareness leaflets that had Sean's likeness on it. We also did a sepsis awareness video but after Ciara Hughes left there was no contact from the HSE even though I sent at least half a dozen emails. They have said that they appointed a new sepsis awareness programme manager but, again, they did not reach out. The then Minister for Health, Deputy Simon Harris, sat down with myself and Karen and with members of the national sepsis programme. The then Minister assured us that money was going to be put in the budget for sepsis awareness. He asked the people from the national sepsis programme to keep us in the loop. When Deputy Harris left that role we did not hear anything more. As soon as he was gone we did not hear anything from the national sepsis programme either. So, that is where we are at.

Paul McAuliffe (Dublin North West, Fianna Fail)
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It is my experience, from sitting on other committees also, that before asking witnesses to come in we must be very specific on what we want to ask them or they will wriggle out of giving us an answer. Perhaps we might talk to them about the sepsis awareness campaign, on the spend that has happened in the past and also what their plan is for the future. We may take our lead from what Ms Doireann O'Mahony has said about the Scottish model and we may reference that specifically, or refer to what other countries are doing about awareness of sepsis. This will give us a way of benchmarking what they are doing rather than just, as Mr. Hughes said, taking the bone that is thrown.

While the campaigns might be grand, what other countries are doing may be far better. I do not know how this committee will work. We may find ourselves becoming the sepsis committee and I am aware that the Committee on Public Petitions cannot do that, and there is a health committee too, but I would certainly appreciate the idea of having another meeting. At that stage it will probably be the HSE in before us rather than with Mr. Hughes and Ms O'Mahony-----

Cormac Devlin (Dún Laoghaire, Fianna Fail)
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They could attend in the Gallery.

Paul McAuliffe (Dublin North West, Fianna Fail)
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Yes, and perhaps the witnesses could help us in advance of that meeting, which would be very useful. I thank the witnesses for being here today.

Martin Browne (Tipperary, Sinn Fein)
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The Deputy is taking the words I had written down here. The money that has been spent is actually frightening given it is having no effect. Something needs to change if an agency is spending the money that is being spent. Eight deaths a day is a frightening statistic for something that is so easily preventable. To be spending that kind of money, and those kinds of statistics are still appearing, then something has to change. As we said earlier, I have no issue whatsoever in any campaign with money being spent, but if any other campaign such as for cancer awareness or road accidents, if there were eight deaths a day and that kind of money was being spent with no results, there would be absolute uproar in this country.

Coming back to the bone that the HSE is throwing, I can assure Mr. Hughes that if the HSE comes in here we will try to prevent that ever happening to the campaign group again. I agree with the Deputies that the HSE will come in. The witnesses are welcome to come to the Gallery and we will try to get answers for them.

I propose that, as a small gesture, we hold something in the audiovisual room to try to raise awareness among other Deputies and Senators in the Houses. Is that agreed? Agreed. With Irish Sepsis Foundation representatives, we will organise for them to come in for an hour someday.

Do any members have any more questions? No. Does Mr. Hughes or Ms O'Mahony wish to make a closing statement?

Ms Doireann O'Mahony:

I thank everybody. Before Christmas, we marked the tenth anniversary of the death of Savita Halappanavar. That made headlines around the world for all the wrong reasons. We should not forget that sepsis was a feature in her death. It was only after her death in 2012 that the HSE established its national clinical programme on sepsis.

We are immensely grateful to members for their time and their kind words. We know that meaningful change will happen and, for that, we extend our thanks and thanks on behalf of the others from the federation who are not here.

Martin Browne (Tipperary, Sinn Fein)
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We are very sorry about what happened to Mr. Hughes and his wife, Karen Phoenix, and their family. If there is anything that we can do as a committee, we will. We will try to reduce those figures as much as we possibly can. We will help them try to raise awareness of sepsis.

We will suspend the meeting for five minutes.

Martin Browne (Tipperary, Sinn Fein)
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We have two petitions for consideration today. First, is Petition No. 21 of 2021 entitled Taking in Charge for Mr. Terence Coskeran. This petition relates to the request that the local authority takes in charge a residential development of five houses at Rocksprings, Kilross in Tipperary. This petition has been before the Committee on Public Petitions a number of times. The petitioner presented to the committee on his petition at its public meeting of 12 October 2022 and Tipperary County Council presented on the petition at the committee's public meeting on 27 October 2022. On request of the committee, Tipperary County Council has since submitted a set of documents relating to the planning and taking in charge processes as they relate to this petition. On behalf of the Joint Committee on Public Petitions, the secretariat wrote and thanked Tipperary County Council for supplying information requested. It was also agreed by the committee at its meeting on 27 October that this petition be considered again during Spring 2023. The petitioner submitted further questions which were forwarded to Tipperary County Council by the secretariat on 30 November 2022 on his behalf. Mr. Eamon Lonergan of Tipperary County Council responded with the answers on 2 December 2022. Mr. Joe MacGrath, chief executive of Tipperary County Council, provided a further update to the committee on 16 January 2023 as was agreed at the meeting of 27 October 2022. The petitioner submitted a further reply on 24 January in relation to Mr. MacGrath’s response. The committee agreed to forward this correspondence to Mr. Joe MacGrath, chief executive of Tipperary County Council, and received a further reply from Mr. MacGrath in relation to this petition. The committee recommends that the correspondence from Mr. Joe MacGrath of Tipperary County Council be forwarded to the petitioner for information. Do members have any views on this?

On my own behalf, I think Tipperary County Council has been very fair here and has tried to work as much as it possibly can with the petitioner. It seems at this stage its hands are tied and it can go no further. I suggest at this stage that we ask a representative from Irish Water to come in to explain the situation to us. Every time both Mr. Coskeran and Tipperary County Council seem to take a step forward, there seems to be another obstacle put in their way. I recommend we invite someone from Irish Water to our next meeting, or to a future meeting, to explain what the exact blockages or hold-ups are to it taking this estate in charge when one of the reasons given was that they did not know whether the system in the estate next door would be able for the capacity. It has been proven now that this estate has the capacity to take the five houses from Rocksprings but now there are other obstacles. That is my recommendation. Do the members have any views on it?

Pat Buckley (Cork East, Sinn Fein)
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I second that. I commend he work of the secretariat here and, in fairness to Tipperary County Council, it has come back with as much as it can. It has gone above and beyond would would be expected, and I thank its representatives. We have a good engagement with them here. The Chair is right. The fence seems to be moving all the time. It just seems to be a pressure test from Irish Water all of the time. There does not seem to be any will to go in. There always seems to be an excuse that it cannot go in or there is some technicality. Yes, things have changed over the years but it is a two-way system, pardon the pun; water in, water out. Reading from the raw reports, Mr. Coskeran actually paid for his own CCTV cameras to go up those lines. He had everything done. I worked in sewerage and water. If I go back to 1986, I can name a sewerage system that we put in and Irish Water are quite happy to use it at the moment. I am sure it is has been deteriorating. I am not saying this one has been but Irish Water seems to be able to pick and chose and I do not think it is fair. It has now been very frustrating for Tipperary County Council as well as for Mr. Coskeran. I suspect this is replicated in that county with other small estates and around the country in other small estates. This is what is holding up progress. I will try to be brief on this but I can remember going back to a country development plan in Cork County Council at one stage where there was a proposed development in Monard outside Blarney. That is not even my constituency but it was part of the county development plan which had proposed X amount of houses, schools, even a church and the whole lot. What scuppered that whole deal was Irish Water because it refused to service the plan at the time. That is wrong. I can actually remember being on the record asking the CEO at the time in Cork County Council if we now had a situation where an entity or company such as Irish Water were dictating to the county council where it can and cannot develop. Yes, there may have been a few mistakes made to and fro between Mr. Coskeran and Tipperary County Council, but at least through engagement and dialogue - engagement is the big word here - they have resolved as much as they possibly could. Then we are being stonewalled again because there is very little engagement with the other side, in this case Irish Water. After what we have discussed here, the last thing I want to see coming in here is a statement from Irish Water saying this is the rule and this is X, Y, and Z. That was not the rule in 1986, 1996, 2006, and 2016. Things change but surely there is a commonsense approach here. I do not think Irish Water is going to be at a loss in doing these works. It does get enough of taxpayers' money to carry out this work. It also has an obligation to do the right thing and that is what makes it very frustrating for me. There is the other aspect of it as well which is the mental anguish on people. It is grand if businesses want to make a profit but a bit of commonsense is needed, remembering that at the end of the day there are human beings with feelings here who want to get on with their lives. They thought they had done everything absolutely right. Years down the road they have the stress and the strain and the additional moneys they have spent which is probably all down to a lack of engagement, common sense and of humanity. I certainly agree with the Chair about bringing Irish Water in here and getting some accountability for both Tipperary County Council and for Mr. Coskeran.

Martin Browne (Tipperary, Sinn Fein)
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We will write to Irish Water and invite its representatives in to a forthcoming meeting. We will try to get answers and see what the story is.

The second petition is Petition No. 60 of 2022 entitled Save Clifton District Hospital, for Ms Anne McDonagh. This petition relates to a request that the HSE stop the services and resources of the hospital being systematically stripped and that the HSE restore the hospital to levels of service previously maintained in the past. The petitions case manager corresponded with Mr. Ray Mitchell, assistant national director, parliamentary affairs, HSE, on 7 November 2022 and received a reply from Mr. Mitchell in response to the petition on 15 November 2022. The petitioner responded on 15 January 2023 and this reply was forwarded to Mr. Ray Mitchell for reply. Mr. Mitchell responded on 22 February 2023. The committee recommends that the correspondence from Mr. Ray Mitchell, assistant national director, parliamentary affairs division, HSE, be forwarded to the petitioner for comment within 14 days. Do the members have any view on this?

Pat Buckley (Cork East, Sinn Fein)
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I agree with the Chair on that. These scenarios seem to be getting a bit repetitive.

I would be interested to see what the response will be and I would like to revisit that once the response comes back.

Martin Browne (Tipperary, Sinn Fein)
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I concur with that. Looking at some of the responses and thinking of other issues that have come up before this committee and all around the country, it seems that some responses are copy and pasted. Two words that stick out to me in this response are "design stage", which we have seen in other places. A fortune is being spent doing designs and drawings with no indication of what will result at the end of it. In most cases we have heard of, at the committee and in our offices, the next thing that happens is that it is claimed it is not possible to get staff. We will wait for its comment but it is time we brought in the HSE.

On Clifden District Hospital, we will see when we get the reply back from the petitioners. When they get the reply we will see what answer they got. It seems repetitive and I remember being at a meeting in Clonmel one day and we were told that 350 other short-term beds were going to be closed. This seems to be a repetitive pattern of picking off small places one at a time. I would hope that is not the situation but you see it happening over and over and there is no definitive plan for what will replace these hospitals. We are told on a continuous basis that everything is at design stage. Somebody needs to answer to this committee on what is going on in the health service. The committee recommends that we wait for the reply from the petitioner and we will probably have received that by next month's meeting. We will see where we can take it from there.

That concludes our consideration of public petitions this afternoon. I invite members of the public to submit petitions via our online portal, which is available at petitions.oireachtas.ie. A petition may be addressed to the Houses of the Oireachtas on a matter of general public concern or interest in any issue of public policy.

Next on the agenda is any other business. Would members like to make any final comments?

Pat Buckley (Cork East, Sinn Fein)
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I thank the committee secretariat and the case workers, as always. An amount of work goes on behind the scenes and that has to be acknowledged.

Martin Browne (Tipperary, Sinn Fein)
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I concur with that. The work they do on our behalves is entitled to be acknowledged.