Peter Burke (Longford-Westmeath, Fine Gael) | Oireachtas source

I acknowledge the life of Stephen, and welcome Caroline and Martin to the Visitors Gallery. I want to also acknowledge Senator Doherty and in particular Senator Seery Kearney for that very moving and emotive contribution in which the Senator outlined a life-changing experience that so many in our society go through in their daily lives. It is poignant to note that October is the month set aside to mark pregnancy and infant loss and it is good that this House is contributing to recognising the unbearable losses suffered by parents, especially mothers, but also their families.

This past week was a time when events to commemorate pregnancy loss were held across the country and internationally. I know that many have joined in these events to mark the trauma that impacts many families throughout the country. I have listened with great interest to the contributions of Senators. It is difficult not to be moved by the stories of the families impacted by such loss and the commitment and support each of them provide. We are fortunate to have support groups and those wonderful professionals working within the HSE who provide care, guidance and solace during very difficult times.

Looking back, it is clear that a higher profile is being given to parental bereavement issues. Whereas, before, many people felt that they did not know how to approach the subject or what to say, we are increasingly seeing people coming forward and offering words of understanding, sympathy, kindness and condolence. Parents are also being more open about their losses, which in the past were not disclosed or discussed, even within families. This openness is to be welcomed and our appreciation must go to those who are providing practical supports and leading the arguments for greater recognition. Pregnancy loss affects many families. Department of Health and HSE data indicate that, each year, as many as 14,000 early pregnancies end in loss, while 320 to 350 stillbirths and early neonatal deaths occur. Many parents deal with this loss in silence and do not share their stories or seek support.

Senators Doherty and Seery Kearney have drafted the Bill that is before us today. As the Senators have indicated, the purpose of the Bill is to establish a non-statutory register called the certificate of life. In doing so, the process will provide an option to recognise and commemorate a loss in pregnancy where it cannot be registered in the stillbirth register. I think this is the first such initiative to have been put to either House.

On behalf of the Minister, Deputy Humphreys, I want to reference the forthcoming proposals which will soon be considered relating to the stillbirth register. The General Register Office, GRO, is notified of all births, stillbirths and neonatal deaths that occur. Something of the order of between 300 and 350 families are affected each year by loss due to stillbirth and early neonatal deaths. The GRO also observes that due to the voluntary nature of the stillbirth registration process, around half of parents elect to register, meaning that a significant number of parents do not register, perhaps in part reflecting the effect of the huge loss suffered by them and their wider family. While we accept that parents may not consider registration at the time of their loss, we feel that the stillbirth registration process confers a recognition of their stillborn child that in later years would bring a degree of comfort to them, and we would encourage parents to register. Proposals are being advanced by the Minister, Deputy Humphreys, which I hope the Government will agree to, that will see legislative change to the criteria and give greater access to the register.

The report outlines that the threshold of foetal viability has progressively lowered over time. In the 1970s, the limit was set at 28 weeks' gestation and, over the subsequent 30 years, it has decreased to 24 weeks' gestation. More recently, the threshold of viability has reduced to 23 weeks' gestation with advances in medical care and practice. I understand the report has taken account of the opinions of neonatologists, obstetricians, neonatal nurses, midwives and parents.The report notes the psychological and emotional toll of a very pre-term birth on the parents and extended family.

I hope the House will join with me in expressing our deep appreciation to the many midwives, nurses, doctors and other professionals who deal with parents, and especially mothers, at a crisis time in their pregnancies and where the outlook can often be bleak and unforgiving. I think Senators will agree that these are very welcome developments and ones that will need to be reflected in our legislation. In mentioning this, I wish to draw the attention of the House to work that is being undertaken in respect of a commitment the Minister, Deputy Humphreys, made in the Dáil this time last year to examine the scheme of registration for stillbirths.

The Civil Registration Act provides that no person other than the Registrar General or a member of the staff of the GRO, is authorised to search the Register of Stillbirths. The GRO provides whatever assistance it can to enable searches. There are restrictions on providing copies of the information held in the form of a certificate to anyone other than a parent. The Minister, Deputy Humphreys, has asked the GRO to examine the current restrictions and to bring forward proposals to improve access and to identify any legislative implications involved in making the stillbirth register more open and if it should in fact be fully open to public access, as with other public registers it holds.

In examining this matter, the GRO considered several approaches and took account of representations made by Féileacáin and others, and I am happy to summarise these for the Members. The first option is to leave the current access arrangements as they stand. That is, access is restricted to the parents of the child recorded in the register and staff of the GRO. A second option is to provide full public access along the lines of other registers held by the GRO. A third option would fall short of full public access but would provide access to a wider cohort of family members and family representatives.

In determining an approach, the Minister, Deputy Humphreys, accepted the view of the GRO and others that the status quocannot be maintained. Limiting access to the parents of a child is far too restrictive and this is borne out by representations made over the years by advocacy groups and others. The current arrangement does not provide for situations when parents finally pass away where siblings and other family members wish to access the register. I know that parents are worried that when they die, access to the register might not be facilitated. That is a real concern which we need to address. While the GRO facilitates access in such circumstances, I accept that a better solution can be achieved.

The Minister, Deputy Humphreys, is of the view that full public access to the register will not meet the needs of parents and families who have children recorded in the register. Such a proposal, in her view, does not respect the sensitivities involved and that other, less limiting, forms of access could be considered. Suggestions have been made that if public access is enabled, that an “opt-out” could be provided for parents with respect to the nature of future access to the register. The Minister does not consider that such an approach is feasible given the principles underpinning registration law and practice and how a position could be sustained into the future to deny access to interested family members if such an opt-out was in place. A third option is to reflect the practice employed elsewhere in the registration system where access is permitted to a wider group of family members and representatives. This is an approach favoured by the GRO, in that it balances the sensitivities of parents, while also providing for broader access, without going as far as enabling full public access. The Minister plans to bring legislative proposals in this area in the near future to reflect the range of opinions expressed. It will ultimately be a matter for the Oireachtas to determine the approach.

On behalf of the Minister, Deputy Humphreys, I also wish to raise a number of issues which merit consideration in the context of being helpful in regard to this Bill's passage through the House. The Long Title of the Bill sets out that its main aim is to amend the Civil Registration Act 2004 to establish a non-statutory register called the certificate of life where a child is lost during a pregnancy and does not meet the stillbirth registration criteria. Essentially, what the Bill purports to do is to create a statutory framework for a registration scheme. However, there is a concern in respect of the discretion on parents and I note that parents were not referred to initially in regard to having a role in the registration process. Also, there is no reference to the voluntary nature of the registration in the Bill, and this is at odds with how stillbirths are registered.

As the Bill seeks to amend the Civil Registration Act, no mention is made of the GRO or of its role with respect to registration matters. It is unclear if registration should be voluntary, given that the obligation to register is placed on medical practitioners and others. It is also unclear if the registers should be hosted by hospitals or the GRO, although I understand that the former is the intention of the Senators, given that it is proposed that certificates will be issued by medical practitioners or the hospital or medical institution.

While the Minister, Deputy Humphreys, fully accepts the spirit of the Bill, the aforementioned notes are essentially provided to be helpful to the Senators.

The Ministers attention has been drawn in recent weeks to work that has been undertaken in England and to a recently published policy paper on a women's health strategy for England. The policy paper contains a recommendation from the Pregnancy Loss Review. This review has been under way for a number of years in the UK and is expected to be published later this year and has been mentioned as a useful resource in determining an approach which could also be applied.

The government there has accepted a recommendation to introduce a pregnancy loss certificate in England. My understanding is that will be a voluntary scheme operated by hospitals and will enable parents who have experienced a pre-24 weeks' pregnancy loss to record and receive a certificate to provide recognition of the loss of their baby. Unfortunately, very little detail is offered other than that of a certificate which will have no legal standing but will act as an acknowledgement of a life lost.

The Minister, Deputy Humphreys, considers that such a scheme could have application and would go some way to meet the needs of parents. However, as I already mentioned, consideration of any scheme along the lines that are proposed for England would be more appropriately undertaken by the Department of Health and the HSE.

This is an area on which the Government wants to work with all Senators and there is much work we can do in order to get a clear and common understanding of what people require and how we can meet those demands. I want to acknowledge the commitment shown and to applaud those who have shared their personal stories and the stories of the people they represent. The comments I have just made on behalf of the Minister, Deputy Humphreys, are intended to be helpful.