Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
Link to this: Individually | In context | Oireachtas source

7. To ask the Minister for Health when the clinical review of fatal foetal abnormalities since January 2019 will commence; the terms of reference of the review; and if he will make a statement on the matter. [26018/22]

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I raise this matter on behalf of Rebecca Price and Pat Kiely, whose baby Christopher was wrongly diagnosed with a fatal foetal abnormality in Holles Street in March 2019. Baby Christopher's life was ended wrongly in 2019. The family has sought a review to make sure this does not happen to anybody else and that no other family grieves in the way Rebecca and Pat do on behalf of their baby and with their baby. The family has met the Minister and his officials. I would like an update on the review of fatal foetal abnormalities to ensure this does not happen to anybody else.

Stephen Donnelly (Wicklow, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I thank the Deputy for raising this matter. In 2019, the HSE recognised the need for increased awareness surrounding the correct identification and diagnosis of fatal foetal anomalies. The clinical review of termination services, as provided under section 11 of the Health (Regulation of Termination Pregnancy) Act 2018, was commissioned by the chief clinical officer of the HSE. From notifications I receive under this Act, I understand that termination services are provided under section 11 in approximately 100 cases each year.

The HSE has confirmed that the clinical review group met for the first time on 29 April 2022. The terms of reference were ratified by the review oversight group in advance of this meeting. I will ask the Department of Health to provide the terms of reference directly to the Deputy. The HSE has advised that the clinical review will identify the requirements to enhance the provision of termination services under section 11 of the Act. It will work collaboratively with stakeholders and there are quite a number of stakeholders involved. This will cover both the delivery and management of termination under services regarding fatal foetal anomalies and-or life-limiting conditions diagnosed during pregnancy. The group will engage with service users so their experience of the service is central to the process. It is essential that we hear not only from the clinicians and scientists but from the women themselves and the people involved in using the services. Recommendations will then be made and submitted to the HSE oversight group.

The HSE has stated that the review will examine areas including screening, diagnostics services and genetics in the context of fatal foetal anomalies and life-limiting conditions. It will also examine access to the multidisciplinary expertise that is required and which is being invested in, including clinical genetics and other specialties, counselling services and genetic counselling, which must be put in place, bereavement and other service user supports.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
Link to this: Individually | In context | Oireachtas source

I am very glad to hear the Minister mention the role of clinical genetics. If they had been utilised in this case, this simply would not have happened. If there had been an external review, the parents would not have felt the need to go to the High Court to highlight the circumstances of this case. Hospitals cannot be allowed to review themselves.

I thank the Minister for expanding the number of public interest directors in the new national maternity hospital. That is an important response to cases like this and many others, where parents highlight problems within maternity hospitals and where maternity hospitals do not listen and do not allow for external review. That is essential. This happened in 2019, the parents met the Minister in July 2021 and the terms of reference are from 29 April 2022. It is essential that clinical genetics are included in the review. Parents need to have sight of that and I am not clear as to whether Rebecca and Pat have had sight of that on foot of the correspondence with the HSE. I see that a letter has been sent to their solicitor but I am not sure whether they have had the detail that is appropriate.

Stephen Donnelly (Wicklow, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I will engage this morning with the HSE and the Department to make sure they have full sight of this. The HSE has acknowledged that this has taken a long time to put together. A very eminent chair, Dame Lesley Regan, has been appointed to this work. She is a professor of obstetrics and gynaecology at Imperial College London. She was identified as suitably qualified to lead the review and is an independent person, which is one of the things that was requested and is very important. Professor Regan was also president of the Royal College of Obstetricians and Gynaecologists in the UK from 2016 to 2019 and is currently honorary secretary of the International Federation of Gynaecology and Obstetrics. It has taken a long time to put this together and the HSE has acknowledged that. One of the positives that has come out of this is the HSE has identified an eminent international independent expert to lead this review. I have no doubt she will bring very important international expertise to this important review. To answer the Deputy's other question, genetics and genetic counselling will be included.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
Link to this: Individually | In context | Oireachtas source

That is essential. We have very eminent geneticists in this country as well. Dr. Willie Reardon, who was involved in this case, is a very eminent geneticist and has been a great support to Rebecca and Pat. I thank the Minister for confirming the appointment of Professor Lesley Regan. Rebecca and Pat have looked to meet with her and I hope that can be facilitated.

Something going wrong in a maternity hospital is a tragedy for any family, from which it is very difficult to recover. Where something goes wrong, such as the death of a child or an injury to a child that could have been avoided, it is even more difficult to recover from than other cases. I know the Minister is aware of that. All the parents want is to ensure it does not happen to anyone else. That has been the motivation behind Rebecca and Pat's campaign, to make sure this can never happen to any other family who want a baby in the way they have wanted a baby, as lots of people do.

It is also essential that there is oversight of private fertility clinics. They are covered by the clinical indemnity scheme but it is not clear what is happening around notification to the incident management scheme with the State Claims Agency. I have raised this at the Committee of Public Accounts. It is essential that these clinics are overseen. If they are to receive the benefit of the clinical indemnity scheme, they must be overseen in every way too.

Stephen Donnelly (Wicklow, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I will ask the Department to revert to the Deputy with a note on the current oversight situation. She should feel free to get in contact with me to discuss the matter when she has received that note. Two additional things are happening that are relevant. First, in this year's budget I have allocated €1.5 million specifically to perinatal genetic services. We know more needs to be done and that we need more expertise in this area so €1.5 million has been invested in the national women and infants health programme, NWIHP, to grow that service. Second, as the Deputy may be aware, Dr. Peter McKenna, who was leading the NWIHP, is now leading an adverse incidents team and will be looking at cases around the country where things have not gone as they should have. Specifically to the Deputy's point, this will make sure we have very quick feedback, for all the reasons she has laid out.

Jennifer Carroll MacNeill (Dún Laoghaire, Fine Gael)
Link to this: Individually | In context | Oireachtas source

Would Dr. McKenna meet me?

Stephen Donnelly (Wicklow, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I am sure he would.