David Cullinane (Waterford, Sinn Fein) | Oireachtas source

I have ten minutes and I am sharing time with some of my colleagues. I welcome this Bill. I am sure the Minister will agree it has been a long time coming. Sinn Féin will be supporting this Bill and we will work with the Minister to ensure it is enacted as quickly as possible.

I wish to first address Part 3 of the Bill relating to post mortems before returning to Part 2, which deals with transplantation and the new soft opt-out organ donation system. We have been waiting for too long for this legislation. A human tissue Bill was enacted in Britain in 2004. It has taken 20 years for the Government of this State to do the same. That has not been without its costs and consequences. Since then, we have had the Madden report in 2005, the retained organs audit by Ms Michaela Willis in 2007 and the Carter report in 2009. Each of these identified serious irregularities, from minor inconsistencies to very serious and egregious negligence with organ retention and disposal practices at hospitals across this State.

Most strikingly, the 2007 audit, confirmed by the 2009 review, identified serial malpractice by the so-called Consultant A at the Rotunda Hospital, who named himself in 2009. The inquiry into his malpractice identified many incomplete post-mortem reports, instances of retrospective completion of reports and the inappropriate retention of organs far beyond the permissible period. What happened next is what truly shocked me and many people. An audit published last summer by the HSE conducted on 10% of post-mortem files relating to post mortems between January 2018 and October 2021 found that multiple hospitals had improperly retained organs for more than one year despite all the previous reports. In particular, the report stated "significant delays were noted in relation to the sensitive disposal of organs" from post-mortem examinations performed by one consultant, a retired perinatal pathologist, on whom the HSE is "overly reliant".

This consultant practised at a number of sites on a locum basis and was recently named by "RTÉ Investigates" as the same Consultant A, who had been relieved of his clinical duties more than ten years ago. Due to delays waiting for approval from Consultant A, University Hospital Galway had retained the organs of 28 children for more than one year between 2018 and 2021. Other hospitals that retained organs of children while waiting approval for release from Consultant A include Portiuncula, Galway, St. Columcille's Hospital, Dublin, Midland Regional Hospital Tullamore and University Hospital Limerick. There are still serious questions that have yet to be answered by the HSE, particularly around the governance arrangements that were in place to prevent a repeat of the earlier experience. It seems that no effort was made to ensure that Consultant A was complying with HSE policy. If any formal governance arrangements even existed, they were clearly inadequate, which underscores even further need for this legislation to be robust.

Separate to Consultant A, University Hospital Limerick and Drogheda hospital continued to incinerate remains between 2018 and 2021.

Connolly Hospital also incinerated remains during this period. Children's Health Ireland at Crumlin held organs from 24 post mortems for more than 12 months during the period 2000 to 2021, with one sample dating back to 2000. At the same time, there was the tragic incineration in Belgium of the organs of deceased babies, which were disposed of in a panic by Cork University Maternity Hospital. These families have felt the pain of losing a child compounded by an inappropriate and insensitive disposal of some of their remains, which were retained for further examination and never buried.

This was followed by another report laying bare the tragic consequences of the failure to govern in law the retention and disposal of human remains. We are now told these tragic errors were made in the throes of the pandemic because the mortuary was wholly inadequate. The pathology team needed to clear space in the freezers in anticipation of Covid deaths. We also learned in this report that the graveyard for Cork hospital was at full capacity by the end of 2019. It is clear these mistakes took place because of underinvestment and unpreparedness. That is not a reflection on the staff in most instances, but on a system which failed time and again. All these failures were totally avoidable.

This Bill will put in place legal requirements around the retention and disposal of remains and I welcome that but it will not address the serious capacity deficits which led to these decisions. It will not address the dire shortages of pathologists or the HSE’s reliance on too few staff and it will not address the failures in clinical governance and oversight which the HSE failed to anticipate when consultant A began working for it again. These were failures of management and cannot be legislated away.

That is why I have a significant concern around part of this legislation. While the series of offences and provisions would seem to cover all of these instances, none of these issues are dealt with directly in the Bill. The Bill leaves the detail to regulations which have not yet been published. That is a concern for me. It is always a concern when significant and fundamental aspects of legislation are reduced to enabling powers under which the Minister must issue further regulations. However, when it comes to organ retention and post-mortem practices, I understand and appreciate that primary legislation may not be the best way to handle such matters. I hope we can tease all this out on Committee Stage and get a better sense from the Minister of what exactly those regulations will do.

An ask that has come from some of the families affected by the scandal in Cork is a prohibition on sending organs overseas for incineration. Will the Minister address in his closing statement whether he intends to do this and believes it is feasible. If not, why not?

While there remains some work to do in regulating organ retention, disposal and post-mortem practices, Part 2 of the Bill, which deals with transplantation and donation, is very welcome. This part introduces a new soft opt-out organ donation system. That means consent will be assumed, except where a person has registered an objection in their lifetime. Importantly, the Bill requires consultation with close family where a person has neither formally consented nor objected in their lifetime. It is welcome that families will have a say in ensuring a person's true wishes are carried out. Sinn Féin fully supports this system and I hope it will lead to a significant increase in organ donations in the years to come. The Bill also makes provision for altruistic donations during a person’s lifetime. This is particularly relevant for kidney donation, for example.

I have a concern that this approach will encumber the health service with a much more significant administrative burden than a hard opt-out system without family consultation. It is right to include the family but we must ensure we are resourcing the system sufficiently to increase the number of donations. The legislation places a heavy burden on the medical practitioner and our doctors are already stretched to their limits. To make this work, the Minister will need to put funding aside to build the system and ensure clinicians are supported to conduct the rigorous outreach and form-filling that will be required.

The Irish Kidney Association made this point in a submission to all Members. It said passing the legislation without adequate resources and infrastructure will not result in additional donations. We should listen to that body’s advice carefully. It has proposed several amendments to the Bill which would help to ensure transparency and accountability on this front. It proposes the annual publication of detailed data, along with a potential donor audit. This exists in practice in Britain. It asks that the report detail at hospital level the number of deaths; the number of potential donors; the number of donors requested to donate; the number assured for medical suitability for a donation; the trend of responses from families and next of kin to donation requests; the number of organ retrievals, including information on cases where retrieval is not feasible; and the number of transplants, to include detail on where and why transplantation is not feasible. That association has also requested that the legislation be amended to introduce a required request policy, under which hospitals would be required to record evidence showing all families of potential organ donors have been approached to give consent under the legislation for their loved ones’ organs and tissues to be used for transplant.

The Irish Donor Network underlines the concerns about capacity and infrastructure. In its submission, it states that additional resources are needed for organ donation, transplantation and post-transplantation care, such as additional beds for pre- and post-operation care, more post-transplant specialised doctors and multidisciplinary teams and additional investment in organ assessment and retrieval practices. The network also highlights the need to optimise the use of theatre time to maximise the number of surgeries.

There is a bit more I wanted to say but I will leave it at that. We will have an opportunity to tease out the legitimate and constructive proposals those associations have made but I commend the Minister on bringing forward the Bill.

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