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.