Cork University Maternity Hospital: Statements

Like many throughout the country, I was deeply concerned by what I saw on Tuesday's "RTÉ Investigates" programme on the disposal of perinatal organs in Cork University Hospital mortuary department. I cannot begin to imagine the hurt that has been caused to the 18 families affected. These families had already been through the unimaginable tragedy of having lost a beloved child and it is unacceptable that their child's organs were disposed of in this way. This simply should not have happened. While it would not be appropriate to comment on individual cases, I want to acknowledge the bravery of the couple who spoke about their experiences and heartbreak on Tuesday night's programme. In particular, I commend them on their primary concern that other families do not go through what they have been through.

It is right that the hospital apologised for what has happened.

If I may, there is another group of people who I would like to take the opportunity in this evening's debate to speak about and to speak to. This is the parents and everyone else who was involved in the initial scandal back in the 2000s that led to the Madden report. On Wednesday night, as I was on my way here from the Department of Health for the votes, I met a woman - a mum - who had been involved in that and who had lost a child herself. She was one of the people involved in Parents for Justice. She spoke about the years of work, fighting and campaigning at the same time that they were dealing with their own tragedy. She was shocked at what she saw on “RTÉ Investigates”. She told me she was concluding that all of the work they had done had been for nothing, if this was still happening. If she was still seeing this on RTÉ so many years later, their work had been for nothing. I want to pause and say to everyone who was involved in that campaign what I said to this amazing woman last night, which is that the work, the advocacy and the fight they spent so many years of their lives involved in had an enormous positive benefit. We will be legislating, and that will be debated tonight, but more importantly, the rules and the procedures around this issue were changed, and changed substantially. I want to say to all of those parents and everyone who was involved at the time that their work, their fight and their advocacy has spared many parents the trauma, the heartache, the hurt and the anger that they went through. Because of their work, real change did happen. What we are dealing with in Cork, we all hope, and we will discuss this at length this evening, is an isolated event. However, it is important that all of those people know that there was profound, important and positive change on the back of all of their work. I can tell them that the health service is absolutely committed to ensuring that what happened in Cork University Hospital does not happen again.

I would like to provide colleagues with some background regarding what happened. In May of last year, the HSE informed the Department of Health that the mortuary department of Cork University Hospital had disposed of perinatal organs on 25 March and 2 April 2020, and that that had happened through incineration. This affected 18 families and it must never happen again.

The HSE standards for post mortem examinations services, which were published in 2012, clearly require that organs are to be buried or cremated. Furthermore, Cork University Hospital has advised that its own policy clearly states that all perinatal organs, where the patients’ or parents’ choice is for disposal by the hospital, are to be buried. That did not occur. Instead, the organs were transported to Belgium for incineration. This was not in accordance with the HSE standards and not in accordance with hospital policy, and it is not acceptable.

Information has been given by the hospital group regarding why this action was taken. How this happened is a critical question for me and for the families, and I am awaiting the outcome of the hospital group’s review in this regard. When things go wrong in the health service, it is imperative that there is engagement and open disclosure with the families and that appropriate supports are in place. The HSE has informed my Department that open disclosure occurred with the families. The HSE has said that initial contact was in mid-May 2020 by phone, followed by registered letter. My Department was also advised that all families were offered a meeting and the full supports of the bereavement and pregnancy loss services. I watched the “RTÉ Investigates” programme and I understand that this position has been disputed by some of the families affected, which I acknowledge.

The provision of bereavement care is an integral part of our maternity services. In response to a recognised need for such services, the HSE’s national standards for bereavement care following pregnancy loss and perinatal death were published in 2016. The standards are designed to enhance bereavement care services for parents who experience a pregnancy loss or perinatal death, and cover all pregnancy loss situations. Since the launch of the standards, development funding has been provided to the HSE’s national women and infants health programme to establish bereavement specialist teams in all of our 19 maternity hospitals or units. All maternity units now have in place dedicated bereavement teams which comprise staff members who have undertaken specialist and extensive education in bereavement care, and include a dedicated clinical midwife specialist in bereavement care for each maternity unit. The teams provide support, counselling and information to parents and families. We have invested heavily in our maternity strategy and I fully intend to continue with that investment.

Regarding the ongoing review of this incident at Cork University Hospital, from the outset the hospital group advised that it was managing the incident in line with the HSE’s incident management framework and had commissioned two reviews. The first is a systems analysis review with external subject matter expertise, and the second is a regional perinatal service requirement review. The systems analysis review is the investigation to find out what happened and why it happened, and what can be done to stop it happening again. Families are encouraged to participate to ensure that their experience is incorporated. I am frustrated at the delay with this report. The hospital group has committed to completing it by early November. I am awaiting the report and my Department will work with the HSE to ensure that the recommendations are implemented.

I first learned of what happened when RTÉ approached my Department for comment. I immediately asked the HSE to provide assurances that this had not happened anywhere else and that all hospitals are, at present, fully compliant with the HSE’s post mortem examination standards. Initial assurances were provided by the HSE about current practice. However, a further review has been initiated by the HSE to ensure there has been consistent compliance with the 2012 national standards. I have received assurances from the HSE that this review is being undertaken in a timely manner and that the outcome is relayed to my Department.

By way of background, a number of steps have been taken to improve services in recent years, which goes to the work and advocacy of the group who fought for this so many years ago. Following the late 1990s, measures were taken to address concerns relating to post mortem practice, in particular those concerning consent, organ and tissue retention and the subsequent disposal of retained organs and tissues. Among these were the report of Dr. Deirdre Madden on post mortem practice and organ retention in 2006, and the Willis report, an independent audit of retained organs published in 2009. The Madden report outlined general facts in relation to paediatric post mortem practice in Ireland and included a number of recommendations relating to post mortem practices at both a hospital and a legislative level. The main recommendation was that no hospital post mortem examination should be carried out and no organ retained from a post mortem examination for any purpose without family knowledge or permission. Following a recommendation of the Madden report, the HSE commissioned Ms Michaela Willis, MBE, to conduct an independent audit of retained organs in the State both pre and post 2000 and to assist the HSE and inform development of national standards. The Willis report presented the findings of the retained organs audit in 2009. The report contained a number of recommendations to strengthen post mortem examination practice, particularly in regard to record keeping and training.

In 2012, the HSE published standards and recommended practices for post mortem examination services. These were drafted by the HSE national post mortem examination services advisory group, having regard to the recommendations of both the Madden and Willis reports. The overall aim of the standards is to ensure high-quality post mortem examination services. The standards emphasise that families should be and must be at the centre of decision-making and control in regard to consent for a hospital post mortem, and that communication in all aspects of care following death is of paramount importance to bereaved families.

The proposed human tissue (transplantation, post-mortem, anatomical examination and public display) Bill will create a modern legislative framework for consent for activities involving human organs and tissue. It will implement the key recommendation of the Madden report that no hospital post mortem examination should be carried out and no tissue retained for any purpose whatsoever without the informed consent of the family or next of kin.

The proposed Bill will ensure that the principles of protection of the bodily integrity of the individual before and after death, and respect for the autonomy of the individual and the rights of the bereaved, are enshrined in legislation. It will provide for a coherent overall policy framework and will ensure a consistent nationwide standard in relation to the process of seeking consent and record management relating to hospital post mortem examinations.

The drafting of this human tissue Bill is a priority for me and for the Government. Work on the drafting of the Bill in collaboration with the Office of the Parliamentary Counsel is progressing with a view to ensuring that Government approval is secured to publish the Bill before the end of this year.

This has been an extremely distressing situation for parents who have already suffered unimaginable loss. When an incident occurs, a core principle is that the health service concerned takes responsibility for ensuring that the incident is appropriately investigated so that there is service learning and improvement and this does not happen again. These families must know that the health service has learned from what happened and that what they have now gone through cannot and will not happen to any other families.

I thank the Minister. I want to start by saying that I realise this is a very difficult and distressing, and heartbreaking, time for everybody involved and I commend the courage and bravery of all the families that have spoken out in relation to this matter.

The revelations in the "RTÉ Investigates" programme about Cork University Maternity Hospital, CUMH, sending babies' organs to Belgium along with clinical waste for disposal has shocked everybody to the core. One of the most heartbreaking testimonies was when you heard people describe that it felt as if the remains were discarded as a piece of rubbish. That is devastating and heartbreaking for families who have already gone through such an incredible loss.

I welcome that there will be an investigation. However, we want to know more about this investigation. It is important that we get some answers today. Obviously, it is a very sensitive subject - everybody acknowledges that - and it has to be dealt with as such.

The investigation must be thorough and transparent. It must get to the bottom of this and establish how widespread the practice may be. The Minister made reference in his speech to the once-off nature of what has been described, but that has been disputed by a number of the families. The RTÉ programme further highlighted that it was not a once-off and that many organs had been released by the pathology department following post mortem examinations and they lay in storage in the hospital morgue, in some cases for several months. I am sure the Minister would agree it is important that we get answers to such questions.

I ask what specific form the investigation will take. How will it be conducted? What is the timeframe for a report? Will the Minister be receiving a copy of this report directly? What hospitals are part of the investigation? Is the investigation being spread out to all hospitals? That is really important because we have a history in this country of investigating one incident when clearly there could be examples of others. It is important to be as thorough as possible in this situation.

As I am sharing time with my colleagues, I will finish by saying that unfortunately, I am always struck by the lack of accountability and responsibility that seems to be shown in this country and in our history, particularly whenever we are speaking about topics that affect women and children. We need to start seeing accountability and responsibility. That is one of the best ways the State can show that it is truly sorry, it does not wish this to happen again, it wants to get answers for people and it wants justice going forward. There has to be such responsibility and accountability. This practice must end and we cannot have any more situations where families are placed in this horrific position.

The Minister has the balance of the time - five minutes - to answer some of the questions.

I am happy to do it now, or would Deputy Gould like me to answer after both Deputies have spoken? I am happy to do it whichever way the Deputies like.

I thank the Minister.

My thoughts are with all the families who have suffered unimaginable heartbreak and have had this further compounded this week. This has added to their grief when their grief is so overwhelming that they are already just trying to cope with it.

This week I was contacted by a lady whose son was born in January 2020 at 24 weeks. She has asked that she and her family remain anonymous but she wants me to tell his story here today. Her son was born in CUMH. He lived for one day. He spent that day surrounded by their love and then, sadly, he passed. CUMH asked for an autopsy to be carried out and she agreed. She signed the release form on the condition that her son's remains would be buried in the Garden of the Angels in Curraghkippane in Cork. She and her family held a funeral for their son and began what I can only imagine is the toughest grieving process anyone can go through. She has spent the past 18 months grieving her child and believing that his remains, as she had been promised, were in the Garden of the Angels. On Monday, she received a phone call from the bereavement nurse in CUMH to let her know that a family had discovered something - and "something" is the key word here - that also affected her baby and it would be in the media. She was not told what that "something" was and was instead left to find out on social media and the television, radio and newspapers. This is unimaginable and morally wrong. For the past three days, this grieving mother has waited for a phone call or an apology, or even a recognition of what has happened. She is still waiting because no one from the HSE or CUMH has been in touch. As soon as one family discovered this horrific tragedy, all families involved should have been informed. It should not have taken RTÉ for families to be told that something was coming out.

These families were left with so many unanswered questions. I was asked to ask the Minister three questions here today. When CUMH could not bury their son's remains as agreed, why were the families not contacted? When they realised that the remains could no longer be held in CUMH, why were the families not contacted? When the families were finally contacted on Monday, why were they not given the full story? Will the Minister make sure that someone makes contact with this lady and the rest of the families today to ensure they get the answers they need and the apology they deserve? A press statement is no way to issue an apology.

Does Deputy Funchion want the remaining time to be used for a reply?

Deputy Wynne wants to take some of the time.

Like my colleagues, I wish to take this opportunity to extend my sincerest and deepest sympathies to the families dealing with the aftermath of this scandal. It was heartbreaking to listen to the parents of baby Lee and to hear the story recounted by Deputy Gould. It was harrowing news for us all to hear, and all of the parents who have been affected by the recent revelations from CUMH are at the forefront of our hearts and minds. We must now ensure that this sensitive matter is dealt with in an appropriate, professional and sensitive manner.

In the wake of the last major similar scandal two decades ago, promises were made that history would never repeat itself. Devastatingly, however, we are here again in a sad and shameful situation that I have no doubt will forever stay with all of us, in particular the families impacted. This time, we should ensure that a way is paved for more preventative actions to be taken.

I have several questions about how the State will guarantee that families avoid this kind of trauma in the future. This is a sensitive subject and it must be dealt with as such. An investigation must be thorough and transparent and escalated to emergency status to ensure it is brought to a timely conclusion that avoids dragging out the pain and torture for the parents and families impacted. It must get to the bottom of why this travesty occurred. We should not be limited and should instead establish how widespread this practice may have been. What form will the investigation take, how will it be conducted and, importantly, who will conduct it and will it be overseen? Obviously, it should be conducted by an external independent investigator.

Like Deputy Funchion, I would like to know what hospitals are going to be included in the investigation. Will it be spread to all maternity hospitals? The Minister stated that he had contacted other maternity units across the country to confirm that this was an isolated incident. In light of the extremity of this scandal, however, what assurances will there be that that is the case?

CUMH has rightly recognised its mistake. However, in May 2020, hospital management sent an incident report to the Department of Health. Management did not categorise the incident as serious but did express concerns about there being adverse publicity. That the incident occurred in the first instance is alarming, but the lack of regard of its seriousness only adds insult to injury. Senior pathologists followed up directly with the HSE and called out the unacceptability of the hospital management's dismissiveness of the issue. It is important that the senior pathologists took the moral and ethical route by calling their counterparts out on the misinformation presented in the incident report, but it shows that there can be a culture of minimising breaches of standards and brushing things under the carpet.

What will be done to ensure this is the final time that families are exposed to a traumatic event like this one? Will there be a wider examination into the HSE's standards and practices around post mortems? Are these guidelines adhered to and do they need to be legislated for in terms of a human tissues Bill?

Once again, we extend our deepest sympathies to the families who have been impacted.

I might start with Deputy Gould. Cork University Hospital and the HSE have stated categorically that they have contacted the 18 families involved and that that was not done now, but last year around mid-May. If that is not the case, I will act immediately. There can be absolutely no question of other families who this may have happened to and who have not been contacted. If that was the case, it would be completely unacceptable. The Deputy might ask the family involved for their contact details and I will follow up on the matter immediately. There can be no question of this being more widespread. We have to act.

To clarify, the family were contacted, but only on Monday and only to say that there had been revelations in the media. They have not been formally contacted about what took place. There was an initial contact, but I have outlined the situation. I can contact the family after we speak and, if they are willing, pass on the details to the Minister.

If they are willing to do that, I will act on it immediately to find out what the situation is. I thank the Deputy for raising the matter.

I am conscious of the time and that the issue of the reviews may arise in other questions. There are three reviews happening. Two are being run by Cork University Hospital and one is being run by the HSE at my request. The first review is what is called a systems analysis review, the second is called a regional perinatal service requirement review and the third is a review based on my request of the HSE for absolute assurance around any other services. The first two reviews relate to Cork University Hospital and Cork University Maternity Hospital. The first, which is the systems analysis review and the one I imagine most Deputies will be interested in, is to establish what happened, why it happened and what needs to be done as a result. It is an investigation into the incident itself. The second, which is also important, examines the methodologies, standards and standard operating procedures to see if changes need to be made at policy level. With the third review, I have asked the HSE for assurances from across the system. Initial indications from the HSE are that all hospitals are in compliance now. The HSE is undertaking a look-back to see what the situation has been in previous years across the system in every relevant hospital.

None of us who watched the "RTÉ Investigates" programme on Tuesday night could not but be moved by the scandalous effect on the 18 families the organs of whose poor children were sent abroad for incineration. The courage, composure and strength shown in the programme by Leona Bermingham and Glenn Callanan, who lost their son Lee's organs, were incredible and I do not believe any of us will ever forget what we watched. I commend the "RTÉ Investigates" programme itself and the work of Ms Aoife Hegarty, who is not for the first time shining a light into the dark places of our health service, which needs to be done. I hope that some good and change will come from this.

In his statement, the Minister answered a number of the questions that I had planned on asking, those being, whether he would confirm that the practice had not happened in CUMH before and that it had not happened in other maternity hospitals. He has initiated a review in respect of the latter. When does he expect to have the results of the reviews and how will they be presented to the Oireachtas? If the reviews highlight that this has happened before, how does he plan to contact anyone who has been affected? I hope that no one else has been affected.

The Minister has committed to publishing the human tissue (transplantation, post-mortem, anatomical examination, and public display) Bill by the end of the year. Will he commit to prioritising it in the spring legislative programme? That would be very important, as we need to see it through. There is a gap. The audit's results were 12 years ago but we have not followed up with legislation.

I wish to focus on something. The Minister said that there would be three reviews and he would take and implement their recommendations. There has been a fundamental failure of governance. No matter the results of the reviews, we can see that. With whom will the buck stop and what will the ramifications be for any individual or department that is ultimately responsible for this? There have to be some ramifications.

The Minister's speech references future learnings and improvements for the future and how we can minimise the risk of this happening again but what he delivered was firmer in that he asked how we can stop this happening again or make sure that it does not happen again. I like what he said more than I like what was written into the speech. I hope we will see that in terms of follow-through by the Minister on what needs to happen in this area.

Another issue I want to raise is the blaming of Covid for what happened. Again, this does not hold water. It can be easy for people to forget how difficult things were in April and May 2020, but that said, given what we are dealing with here and the sensitivity of the matter, throwing Covid around as an excuse is not acceptable. People are sick and tired of that when it comes to trivial things in their lives. When it is thrown into the mix, without any reasonable basis to the ordinary man and woman, for something as serious and sensitive as this matter it angers people. I would welcome a comment from the Minister on that as well.

I thank the Deputy for his comments and questions. With regard to the three reviews, the first is a review of what happened and why. I am advised that we will have that around the start of November. On the second review, which is the perinatal review of standards and procedures, we have not been given a concluding time for it, but we are asking the question as to when we might have it. Regarding the system-wide review and whether this happened anywhere else, we expect to receive that from the HSE in approximately three weeks. That is the detail on the reviews.

With regard to who will be held to account and Covid, we need to allow the review to happen. I need to be conscious not to prejudice the review in any way. It will be a thorough review. I ask that it be allowed to happen, following which we can look at the results. We can discuss it here, but I imagine is something the Joint Committee on Health might want to engage on directly with the HSE. There are various different ways we can do that.

On the Bill, it is important. Believe it or not, it started with the Madden report in 2006. It was drafted in 2019. I have set it for priority in this Dáil session. If I were in the shoes of colleagues, I might be asking if this legislation is being prioritised because of what has happened. I give them my word that the Chief Whip and I prioritised this several weeks ago in drawing up the legislative priorities. Long before any of this came up, we had prioritised it. The human tissue Bill is important legislation. Essentially, it will implement the key recommendation of the Madden report that no hospital post mortem examination should be carried out and no tissue retained for any purpose without the informed consent of the family or next of kin. The Bill will ensure that the principles of protection for bodily integrity of the individual before and after death and respect the autonomy of the individual and the rights of the bereaved. The Joint Committee on Health will carry out the pre-legislative scrutiny of the Bill. On the timing in that regard, I hope to bring the recommendation to Cabinet in this Dáil session, and in the following Dáil session, to have it before the House. The following is not relevant to the conversation we are having now, but there is another reason the Bill is important. If passed by the Houses, it will enshrine in legislation an opt-out system for organ donation, replacing the current opt-in system, which can and will, we would all hope, save many lives in the coming years. It is important legislation.

I join the Minister and colleagues in conveying my deep concern in regard to what occurred with the disposal of perinatal organs and the hurt and upset caused to the families. It is difficult enough to suffer a loss without having to also deal with what occurred in this case.

For most people, the birth of a baby is a happy event. It is also a time of celebration for an entire family. Currently, most pregnancies lead to the birth of a healthy baby. It can be easy to forget that this is not always the case. Alongside the excitement that accompanies most births, there is the ever-present and unwelcome shadow of pregnancy loss and perinatal death. Despite the many modern advances in obstetric and midwifery care, one in four pregnancies will end in a miscarriage and one in every 240 babies born in Ireland will die just before birth while a smaller number will die shortly after birth. Globally, more than 2.6 million babies are stillborn annually. The high emotion of expectation in pregnancy, which changes suddenly as a result of a miscarriage, stillbirth or neonatal death is a very difficult experience and it has a long-lasting impact on parents and immediate family members.

The national implementation group of the national standards for bereavement care following pregnancy loss and perinatal death published a report in July 2021. It is a comprehensive report, which deals with all of the issues and carries out a review of the progress which has been made over the past five years. What occurred in CUMH in March-April 2020 is regrettable and should not have happened. I understand that the South/South West Hospital Group and CUMH have apologised to the 18 families who have suffered as a result of this error, whereby organs retained by the hospital were sent for incineration. The perinatal pathologist became aware of the removal of the perinatal organs from the hospital mortuary in late April 2020 and immediately raised concerns with the relevant authorities. CUMH staff volunteered to take the lead role in openly disclosing the error and apologising to the parents. I understand from the chief executive of the South/South West Hospital Group that all 18 were families were contacted by it and that the supports of the CUMH bereavement and pregnancy loss team remain in place to provide ongoing contact care and support as required by the parents.

It is important to note that organs are retained for a only a temporary period. They are retained to allow the pathologist complete an investigation into the cause of death. There was a full review of all maternity units last year by the monitoring group. It recommended that all maternity units have access to mortuary facilities, with a suitable area for families to receive and spend time with a baby following a perinatal death. CUMH, which is one of the top four maternity units in the country, still does not have a dedicated area, despite it taking on perinatal autopsies from five other maternity units over the past 12 months. It is important that this issue be resolved at the earliest possible date.

Professor Keelin O'Donoghue, consultant obstetrician, who is monitoring the implementation of the national standards for bereavement care following pregnancy loss and perinatal death, has confirmed that staff in the maternity unit at CUMH were not aware that organs had been sent overseas for incineration until after it had occurred. She has also confirmed publicly that the implementation team she chairs was assured earlier this year by all 19 maternity units in the country, including CUMH, that they had guidelines in place on autopsy consent, the disposal of remains and the retention of organs and that they had access to suitable burial ground. I understand that CUMH has access to a burial ground, which it uses. This incident should not have occurred. The parents of 18 children and their immediate families have been adversely affected not only by the loss of their loved ones, but by what occurred in the disposal of the organs retained.

I understand there is an external review and the Minister gave them further clarification on this. However, no matter what review takes place, it must be speedy and take place in the quickest time, because all the families need full clarity in this matter. It is also important that all the other 18 maternity units around the country set out quite clearly that they are fully following the guidelines and that there has been no deviation from same.

The report published in July on the implementation of national standards for bereavement care makes 40 recommendations. The report sets out what progress has been made in the past five years in dealing with this issue in each of the 19 maternity hospitals. It is a 65-page report and it goes into this in detail. Each of the 40 recommendations must be implemented in full in each of the hospitals. We should also take on board a number of issues that came up in the report. Under the heading "Public Awareness", it suggests:

The ... [HSE] in collaboration with the professional bodies and advocacy groups should implement an ongoing educational campaign to raise awareness and recognition of pregnancy loss in Ireland. This would include the role of bereavement care in helping women and their families come to terms with pregnancy loss, both early and late.

It also recommends:

... [the HSE] in collaboration with the professional bodies should implement a public health education programme on late pregnancy loss and, in particular, how the risk of late pregnancy loss can be modified. This should be reflected in antenatal education websites and hospital information materials.

It also suggests:

Senior Management Teams in all 19 Maternity Units should ensure that there is a hospital nominated point of contact for parents who have experienced pregnancy loss or perinatal death and have questions regarding their care - to guarantee that they can easily access information and have questions answered regarding their care.

It also sets out that the HSE "...should work to establish a national screening programme for fetal anomaly in conjunction with the professional bodies and the Department of Health". It further states the HSE:

... should continue to engage with the Coroner Service of Ireland (involving the Departments of Health and Justice) regarding the clinical management of perinatal death cases in order to allow timely reporting to families and hospitals of provisional information on cause of death e.g., consideration to providing a draft autopsy report as per other jurisdictions, as well as facilitating communication between bereaved parents and Maternity Units.

There is no point in reports being published and us then putting them on a shelf to gather dust. All the recommendations in this report should be taken on board and implemented in all the 19 maternity units. It is extremely important.

What has occurred in this case highlights how the procedures that were clearly set out were not followed. Organs of children who had died were retained in a mortuary for a long number of months. As I said, retention of organs should be for a temporary period only. In this case, they were retained for a long period and then sent for incineration. There are many questions to be answered and it is in everyone's interest that they be answered as fast as possible.

I thank the Minister for being present. The core of his opening statement was the last line when he said that these families deserve to know that the health service has learned from what happened to them so it never happens again. I am physically sick to my stomach because a long time ago I was in the situation of helping one of my best friends to bury a baby and it just brings back the scars now. I cannot imagine what those families are going through now. My condolences to all of them and their extended families.

I welcome the Minister's statement and his urgency on this as well. This is not about scoring points. It is a very difficult situation we are in now and a very difficult topic. Even this documentary has opened old wounds for these families. Deputy Gould said earlier that if the families reach out, every one of us can be supportive of them because it is the least they deserve. We as public representatives should help them on that. I welcome the three reviews but again I urge caution as we need these as fast as possible, because these families need closure and we do not want to be going on and on.

I have often said the two most difficult things to do in this country are probably to help people and to tell the truth. It seems to be a very difficult thing to do in this country. I listened to some of the testimonies of families and I commend them on their bravery as well because it is not easy. However, sometimes people have to speak out to ensure these sort of situations do not happen again. How people were treated 20-odd years ago has thankfully changed. People were not ignored, they did not have to go to court and they were not beaten down. I do not want to dwell on it because I was thinking of the Minister's remarks, and we are all sincere and genuine in here, and sometimes we have to pull together and work together. If we can do anything in this House that makes it easier for the families we should. We need to get this done as soon as we can so all these families and their extended families can have closure on this, and at least those old wounds will be closed again. It is a very hard thing and many families will be scarred for life. I refer to the use of counselling, or anything like that, because things evolve. I make an appeal to the families out there that they contact any of us, from any side of the House if they are struggling and we will relay it straight to the Minister. Let us try to work together on this and alleviate the pain for these families as soon as possible.

No words can describe the pain of the 18 families involved in this horrific incident. The loss of a baby is an unimaginable tragedy but the inhumane treatment of their retained organs compounds that pain and trauma. No one can imagine what these families are feeling. My condolences to the families involved; all our thoughts are with them. We acknowledge the strength and bravery shown by the parents who have been able to speak so powerfully on this matter. It is incomprehensible that an incident like this could happen. It is truly shocking and deeply distressing.

Leona Bermingham, mother of baby Lee, who died just over two years ago, has articulated the suffering and anger of her family and others. She explained:

I want people to know he had a name and he was beautiful. I want people to realise that he was a baby that was born alive. There is someone behind these organs that we speak about.

This scandal is about those babies and their families and we must never lose sight of that. They donated their children’s organs in good faith that it might help save lives. It was an incredible gift they gave in the hope that another family would not suffer the same pain. This wonderful, kind act makes the callous treatment of the organs even worse, if that were possible. The grieving families impacted by this scandal deserve answers. We, as a society, also deserve answers. This House must do everything it can to ensure this never happens again.

This incident is distressing for other families who have lost babies in CUMH and other maternity hospitals who are left fearful about the treatment of their children’s remains. We need robust mechanisms to provide assurance to these families as well. It also brings to mind the horrific history concerning the treatment of deceased infants and children by State-funded bodies in Ireland. It is a history that is still very much alive for many families and is the subject of legislation coming before the Oireachtas. When we hoped these types of practices were a thing of the past, a new scandal like this arises. There are no words.

It should also be noted that CUMH has a well-regarded bereavement care team for people experiencing pregnancy loss and perinatal death. These are incredibly important services, which need to be appreciated and fully funded. It is essential that scandals such as this do not stain the good work of these teams and caring professionals. However, we need answers and the establishment of unequivocal protocols to ensure this can never happen again. The 18 families directly affected and other families who have endured loss under similar circumstances need that reassurance.

After previous similar scandals dating back more than two decades, why were there no safeguards in place in CUMH in 2021? How is the Minister ensuring there will be safeguards in place now and that this will never happen again? Is the review the Minister references going to ensure this has not happened in any other hospital in the country?

I ask the Deputy to repeat her third question.

Is the review that the Minister is referencing going to ensure this has not happed in any other hospital in the country?

I thank the Deputy for her questions. She first asked why there were no safeguards in place, but there were and there are. There are very clear standards and protocols in place. The national guidelines are very clear. They say that the only two avenues available are burial and cremation. CUMH's own guidelines go further and state there is one option available, which is burial. What has happened here is that the safeguards, protocols and procedures which are national policy were not followed. The first of the three reviews which will be reporting back to me and therefore to this House in November is looking at exactly this issue. It will ask what happened, why it happened and what needs to be done about it, which leads me to the Deputy's second question. First, we will get this review, which will say what needs to be changed with regard to this specific incident. The second review, which is the perinatal regional review, is also looking at what needs to happen from a guidelines and standard operating procedures perspective. Third, we will legislate, it is hoped with support from right across this House. The human tissue Bill will enshrine all of this in legislation.

On the Deputy's third question, I immediately sought assurances from the HSE for the entire healthcare system. It will report back to me on that in three weeks. The executive is looking at the current situation, and the provisional view I have from the HSE is that all of the guidelines are currently being followed. What the HSE is doing now is looking backwards to determine if they were also followed in previous years.

Can I take it from the Minister's reply that there will be a review of all hospitals to ensure this has not happened in any other hospital?

I do not get much face-to-face time with the Minister so I wanted to raise quickly the issue of baby Kate from Dunmanway. I want to ask the Minister and the HSE to do all they can to approve Zolgensma, a drug used to treat spinal muscular atrophy. This has been called a miracle drug that could save the lives of very small children like Kate who have a rare muscular condition. Kate Mynard is 17 months old and this drug is generally only administered to children under the age of two, based on their weight. Kate’s parents are pleading with the HSE to strike a deal with the manufacturers of this drug in time for Kate to be able to benefit. I ask the Minister to do all he can to make this happen.

There is a drug that has been approved called Spinraza. I met the parents of a beautiful young boy earlier this week at the Laura Lynn Foundation who told me the drug their son is taking is having a real impact, which is very encouraging. The new drug the Deputy refers to has been raised with me and the National Centre for Pharmacoeconomics will be taking a look at it. I fully appreciate that for baby Kate and her parents, time is of the essence.

Most people will agree there is very little that is more traumatic than for a parent to lose a child. There is something very particular about the loss of a child through stillbirth or at the very early stages of infancy. We would all know, either through family members or friends, people who have had to go through that devastating experience. I was struck by somebody who once told me that the only people who could ever fully appreciate that particular type of pain are people who have gone through it themselves, parents who have found themselves in that situation. It is a particularly lonely loss because nobody else, other than the parents, knew the child or the baby. Therefore, it is impossible to imagine a scenario where parents have to go through that pain, have to try to come to terms with and manage their grief and who subsequently learn their baby's organs were shipped abroad with medical waste for incineration. I do not think anybody could expect parents to deal with that in an ordinary manner, for want of a better word. In that context, it is very important to reiterate our appreciation and esteem for the families who have told their stories this week in respect of what happened in Cork.

I welcome the fact a review is taking place and I encourage the Minister to ensure that it is timeframed so that we get the answers that are required as quickly as possible. Those answers must be comprehensive because, as others have said, potentially hundreds of parents are asking themselves whether the same thing happened to the organs of their baby and they need to be given assurances. I wish to quote from an article I read on the RTÉ website when this story broke. This is crucially important because there is no party politics to be played here but there are political questions that must be asked. The relevant segment reads as follows:

In mid-May 2020, hospital management sent an incident report on the incinerations to the Department of Health. However, management did not rate the incident as serious but did express concern about the adverse publicity for the hospital if it came to public attention.

That is absolutely scandalous. Even when management recognised that there could be an issue, they saw it in terms of public relations as opposed to what it might mean for the families involved and for the dozens if not hundreds of other families who might have concerns about it.

As well as the review, there also needs to be something that is almost unique in Irish public life, namely, accountability. Somebody needs to be held to account for the series of events that led to very serious, well-paid individuals coming to an agreement - this was not an accident - that children's body parts would be shipped off with medical waste for incineration. Will somebody, either a body or an individual, be held accountable for what has happened?

I was very concerned when I saw exactly what the Deputy has just described. There is a review going on right now and we will have the results of that in a few weeks. Early November is what the hospital is saying in terms of providing that review to me. When I have that review, I am going to share it. I imagine the Dáil, the Seanad and the Oireachtas Joint Committee on Health will be very interested in looking into it. I know the Deputy will appreciate that I do not want to prejudice that review. We must let the review body do its work. It will be a detailed review and then would be the appropriate time for us to all to debate exactly the issue the Deputy has just raised.

Leona and Glenn have been really brave and articulate in telling their story. I want to ask the Minister about the other 17 families. He said they were contacted in mid-May of 2020. They received registered letters and were offered a meeting.

When those registered letters were sent, were those families told their babies' organs and tissue had been sent to Belgium with medical waste for incineration? Were those families given that information?

It is a very important point. I will give a detailed response. The Department of Health has advised that the HSE South/South West Hospital Group, Cork University Hospital and Cork University Maternity Hospital have apologised to the bereaved parents. They very much regret the incident. The Department is informed that open disclosure did occur with the parents in line with the HSE open disclosure policy of 2019, which we are all familiar with, and as part of ongoing engagement. In line with the HSE's incident management framework, the families were encouraged to participate in the review. The HSE informed the Department that initial contact was made with the 18 families over 11 and 12 May 2020 through telephone contact. All families were also informed that a meeting could be arranged through their contact - that is because they were all in contact with bereavement supports before this - and that they would also receive this offer by letter. This was followed up with a registered letter to all families on 21 May 2020.

The HSE advises that two families accepted the offer of a meeting and the meetings were arranged. Families were offered the full supports of the bereavement and pregnancy loss service and this was provided as they required. One family had requested that very regular contact to be maintained and this request has been met. Cork University Maternity Hospital took the lead role in the open disclosure and it has continued to support the parents with the bereavement and pregnancy loss team.

The Department is informed that all of the bereaved parents affected were offered the support of Cork University Maternity Hospital bereavement and pregnancy loss service and were provided with details of the bereavement midwives to access any additional supports. As the Deputy will be aware, since we all debated it at great length in the previous Dáil, the HSE open disclosure policy from 2019 defines disclosure as open, consistent, compassionate and timely as an approach to communicating with patients. It includes expressing regret for what happened and keeping the patients informed and providing reassurance.

I am in favour of disclosure and communication which is open, consistent, compassionate and timely, but what I want to know is whether those families were informed their babies’ organs and tissue were put in with medical waste, sent to another country and incinerated. The two families that accepted - were they told that? The one family which asked for regular contact – were they told that? The other 14 or 15 families – were they told that? What is the answer to that question?

The families were contacted initially on 11 and 12 May and then on the subsequent dates that I have given. The HSE advises that the families were told. As part of the review-----

Can I clarify, were they told the organs and tissue had been disposed of or were they told the organs and tissue had been disposed of in another country with medical waste by way of incineration?

I want to make sure we get exactly the right information on the record of the House. Therefore, I will ask for a note on that as to exactly what language was used in the letters to make sure we have exactly the right information on that.

Is the Minister saying that, as it stands, he is not sure or clear whether those families were told their babies' tissue and organs had been disposed of along with medical waste in another country by way of incineration? He is not sure of the position and he needs to clarify? Could he clarify on that?

The specific details the Deputy seeks are not communicated either in this or in other events with the Department through the agreed protocols. This is why we need to look at the review. We will have the review at the start of November and it will include exactly these issues. For reasons of patient confidentiality, which I am sure we all support, those types of details do not get reported into the Department of Health or to me.

Finally, is the Minister aware of some reports that some of those parents received phone calls from the hospital the night before the "RTÉ Investigates" programme went out, telling them that their babies' organs and tissue had been disposed of along with medical waste by way of incineration in another country and that it was communicated to them by phone almost immediately before the programme? That is a story. I am asking the Minister to comment on it.

Deputy Gould raised a similar question. The very clear advice we have from the HSE and the hospitals involved was that the appropriate communication was made with the families in May last year. If it is the case, as the Deputy says, that very relevant details were only disclosed by phone before "RTÉ Investigates", I want to know about that and I will be taking that up immediately with the HSE.

The last set of questions were very important. The Minister is right to be cautious and make sure the correct information is put on the public record. It is very important to establish exactly what families were told at all times. That is what needs to happen.

We know that body organs of children who were deceased were incinerated in Belgium with medical waste. I know there will be an investigation and a review. I believe in due process and the investigation has to be given time to do its work and report back. I welcome the Minister's commitment that the Joint Committee on Health will have a role in looking at that report when it comes back in November. However, the HSE standards and practices for post mortems were first published in 2012 and revised in 2015. I assume the Minster will agree that disposing of or incinerating the body organs of children with medical waste in a foreign country without the consent of the parents is not in keeping with those guidelines. Is that the Minister's understanding of the existing guidelines?

What happened is completely unacceptable and it is outside the guidelines. The national guidelines state that when a parent or guardian has consented, the processes that should be used are burial or cremation, not incineration. Furthermore, Cork University Hospital and Cork University Maternity Hospital go further than that and say it is only burial.

It is clear there was a breach in the guidelines. It goes back to what Deputy Carthy was saying about establishing the actual facts and what exactly the breaches were, documenting them and then taking whatever appropriate action is necessary. That is very important because there has to be accountability. I welcome that the Minister has broadened the scope of the review to all maternity hospitals so that we can have certainty this was an outlier and was not happening anywhere else. That is important.

The Joint Committee on Health completed pre-legislative scrutiny on the human tissue Bill in 2019. The Minister might have been a member of it at the time it was done. That Bill would have put new standards and guidelines into law on a range of related matters, including disposal. Where are we with that Bill? Given what has happened, is it a Bill the Minister will now prioritise?

I thank the Deputy. Yes, the Acting Chairman and I, and perhaps other Members in the Chamber this evening, were part of that committee. I have prioritised this Bill. The obvious question I too would ask is "Has it been prioritised just now?". I can tell the Deputy, categorically, that the answer to this question is "No". The Chief Whip and I met several weeks ago to prioritise various Bills for this Dáil term, and the human tissue Bill was one of those Bills. My intention is to bring it to the Government for publication in this Dáil term and then to discuss it in the Oireachtas, and hopefully we will all pass it. It is important legislation. First of all, it puts on a legislative footing the standards and procedures we are talking about. It is not for debate tonight but the Bill also includes for the first time an opt-out with regard to organ donation, and various other technical aspects. This is very important and I believe it will save a lot of lives in future years.

There were a lot of distressing parts in the "Prime Time Investigates" programme and I am very sensitive in putting the questions to the Minister given that families might be listening in. There was a report that the burial space for the interment of organs in this State is full. Obviously, there are capacity issues there. Unsuccessful attempts were made to find an alternative plot. It was decided that cremation was not an option. While we need to conduct a review around what happened, we also must ensure that it does not happen again. Is this separate to the review of what happened and will it form part of the Minister's approach to this?

Exactly that question needs to form part of the review. There are three reviews. The first review will establish what happened and why it happened. It will then be up to us as the Legislature to see if policy responses and additional investment are required. Then it would be up to us to respond to that.

In the couple of minutes that I have, I would like to say how shocking it is that this situation has arisen again in the hospital services. We are aware that this issue was investigated previously and reported on through public inquiries. It must be a truly shocking situation for the families and my thoughts are with them at this very difficult time.

Management did not rate the incident as serious, but did express concern about the adverse publicity for the hospital if the situation came to public attention, according to an email sent by senior pathology staff in Cork, and as reported by RTÉ. This says it all.

Then we see the HSE's excuse for everything now. The hospital group said that the delays were due to the challenges in sourcing appropriate external expertise during the pandemic, and more recently the cyberattack on the HSE. It now expects the review to be finalised in early October or November. It is just shocking that at this stage this is still being trotted out as an excuse. It is amazing that after all that has gone on in the recent past, this would still be allowed to happen in the health services.

It shows a lack of management rather than management in the health services. How do we know that this is the only hospital in the State where this has happened? This must be the burning question today for every parent who has lost a baby in maternity wards in the State. I have contacted management at the Saolta University Health Care Group, which covers Letterkenny, Sligo and Galway hospitals, and covers my constituency, to see if they can categorically say that this situation does not exist there, and that they have checked. They have replied that they are fully compliant with HSE's Standards and Recommended Practices for Post Mortem Examination Services 2012. I am sure that Cork University Hospital would have given the same reply six months before this broke in relation to that hospital. We need more reassurance than this. I am glad to hear that the Minister will be asking all of the hospitals. All parents need to be reassured now.

I also find it amazing that these issues seem to arise in relation to women's healthcare in Ireland. Why have we never had a scandal in relation to prostate cancer in our health services? Why do we never have a scandal around testicular cancer? That question has to be part of any investigation and that question must be answered. Perhaps it is an indication of where the systemic problem is.

The Minister will forgive me if I do not put questions in the four minutes that I have, but I will raise a number of questions.

Notwithstanding the report on retained organs in adult patients by Michaela Willis in 2009, and notwithstanding the report by Dr. Deirdre Madden in 2006, and the 2009 Carter report into the Rotunda Hospital, at some stage along the line I believe there was a Dunne report that was not published, and perhaps the Minister might clarify that. Within that background we have practices and procedures that were clearly ignored and, unfortunately, perinatal organs were sent off to be incinerated along with refuse. We have heard that.

Let us see what has happened here. The management became aware of this way back in April or May 2020. They then notified the Department. Can the Minister tell me what the Department did? The Minister has not mentioned Department's role in this. The management contacted the Department, and I understand that they wrote specifically to the chief clinical officer, and in the incident report they pointed out what had happened. They were asked whether it was a serious incident. The answer was "No", but that there was a risk of adverse publicity. Again, there are more echoes of the cervical cancer debacle. It is the exact same thing: concern about adverse publicity. It is not about the patients, their families or the perinatal organs. Will the Minister tell me what the chief clinical officer and Department do? We are here today discussing this because of "RTÉ Investigates". We are not here due to a hospital telling us that they had made a mistake, that they had learnt from it and had immediately contacted the families. We are here because of "RTÉ Investigates". We learned from the "RTÉ Investigates" programme that some of the families had learned of what happened only the night before. This has been raised already but I am raising it again now.

Specifically, what did the Department do? What did the hospital do? This goes back to well before Covid. I understand that it goes back to the period from May to November 2019, which is way before Covid. Then we come forward into the Covid period, and of course there was a problem with Covid, but what happened in the meantime? What about the practices on the ground and the policy of open disclosure that should have caused the hospital to hold its hands up to the Department and say "we have been very silly here, we have held onto perinatal organs for too long, we do not have a proper system in place and we need help"?

Let us fast forward. How did this arise in the first place? I have had personal experience, which I will not go into, of systems review. I despair. I do not have much confidence in it but I will hold my words until I see it. Certainly, let me say that my own professional and personal experience is not good in relation to systems review.

The Minister has said that he is seeking assurances. The Minister will need to do a lot more than seek assurances. I am tired of assurances. As my colleague, Deputy Pringle has said, I am sure that if we asked CUMH for assurances they would have given to us the assurances we wanted. We do not want assurances. We want to know what happened. Since 2012 there was an obligation on them with regard to procedures, practices and processes with which they have failed utterly to comply. The Minister is telling us today about legislation, but that is the least we might do.

I listened to the Minister's speech. Is it the case that he only learned of this matter from the "RTÉ Investigates" programme and that he did not find out about it from his Department during the whole year when they knew? Are we to believe that the Minister knew nothing and only learned about it from "RTÉ Investigates"? What has happened with communication if that is the case? At any stage, did anyone realise that this was something they should report properly to the Department? If they did, the Department should have reacted properly by saying that it was serious, that it was more than an incident, that it was painful and wrong, and that the hospital had utterly failed to comply with procedures. Then they should have asked "Now what are we going to do about it?" with their hands up. Did that happen?

I am the first to say that we all get caught at committee meetings, but it is unacceptable for Government backbenchers not to be here to ask questions. It speaks volumes about what they place importance on. Then they complain when they do not have time for other subjects. I will be caught like this later on tonight, and I will be the first to put my hands up about it, but this is a very serious issue and a serious lack of participation.

Perhaps the Minister could address the Deputies' comments and questions first and then he can wrap up.

I would be delighted to. I thank the Deputy for her questions. I want to walk through exactly what happened in terms of how this is escalated and the classification of an incident as serious or very serious. This goes to the question that has very reasonably been raised, was raised by RTÉ, and indeed has been discussed by other Deputies. That classification is a matter for the reporting hospital when the incident is being reported through the HSE's incident management framework. The South/South West Hospital Group advised that the incident was escalated to the serious incident management team in Cork University Hospital, and was being managed in line with the HSE's incident management framework.

The framework is focused on identifying what happened, and, obviously, learnings and safety. Following an initial assessment by the safety incident management team in Cork University Hospital, two types of reviews have been commissioned, one which is a systems analysis review with external expertise. The systems analysis review aims to establish the factual circumstances leading to the incident, the key causal factors that may have occurred-----

We have heard all of that. The Minister has set it out clearly. We have asked questions. If the Minister does not wish to answer them, that is okay. It is most unusual for me to interrupt but we have heard all of that. I have read the Minister's speech and he has set that out clearly.

The Deputy directly asked me for the sequence of events as to what happened.

She did and I am responding directly. The Deputy asked specifically what the chronology of events was-----

I never asked that.

-----what reports were done and how the reporting was done, and I am answering her question in detail.

The second review is the regional perinatal service requirement. As the Deputy will be aware, I have instructed the HSE to start a third review, which looks at all hospitals.

With regard to the timing, the first incident occurred on 25 March last year when CUH mortuary sent perinatal organs and human body parts to Belgium for incineration. The second incident occurred on 2 April last year when CUH mortuary sent perinatal organs and human body parts to Belgium on a second occasion for incineration. On 22 April, CUH management were informed that perinatal organs were disposed of by way of incineration.

This was immediately escalated to the safety incident management team in CUH. CUMH attended CUH for a preliminary review of the incident. On 11 and 12 May, CUMH made the open disclosure telephone calls with the 18 families and contacted them. On 12 May, the South/South West Hospital Group informed HSE acute operations, the coroner, the National Women and Infants Health Programme and the quality assurance team.

To address the Deputy's question, the Department of Health received a patient safety communication on 12 May. There were then regular updates whereby the Department requested updates from the HSE in terms of the two reviews. The systems review is about what actually happened and then the perinatal review is with regard to the standard. Update reviews were request on 14 May and the Department received the update regarding the incident. Further updates were then requested on 26 May, 11 September, 13 October, 21 December, 19 April, 10 September and so forth.

To answer the Deputy's question, the first briefing I received was at the time questions were posed to the Department by RTÉ. That was the first time. I immediately sought assurance from the HSE and asked for a full system-wide look.

I think it is necessary but do not believe it is enough that there is a review into the specific incident and into the standards and procedures around that. I want to make sure there is a very thorough review right across our entire healthcare systems, both on what happened and what is happening today, because I think there will genuinely be parents out there who are worried. I really do. Parents who have suffered unimaginable loss will have watched that programme and been worried by it. As well as what is happening today, I asked the HSE to go back and look at subsequent years because there will be parents who will be asking questions on that. The HSE said it will be able to report back to me within three weeks.

The first review is the detail on what happened, why it happened and what needs to be done, which I know we will all be looking at with very keen interest. The HSE has advised that that will be with me in early November. Obviously, I will be publishing that review and I imagine we will debate it here and-or in the Joint Committee on Health. I thank the Deputy for her questions.

If the Minister is satisfied that he has incorporated everything into the reply, that is in order. That concludes statements and questions and answers on Cork University Maternity Hospital.