HIQA Investigation into Midland Regional Hospital, Portlaoise (Resumed): Parents and Patient Advocates

I remind members, witnesses and those in the Public Gallery to turn their mobile phones off as they interfere with the broadcasting of our proceedings. Apologies have been received from Senators Henry, van Turnhout and Crown. Today's meeting was arranged at short notice to follow up on our meeting with HIQA regarding its report on patient safety and maternity services in Portlaoise and our quarterly meeting last Thursday with the HSE. Given the serious findings arising from the report and previous delays in its publication, I advise members to exercise caution, if they can, in referring to the issues without naming specific individuals. On Wednesday, the committee had a very thorough and strong meeting with HIQA, which presented a summary of the findings of its inquiry into safety, quality and standards of services provided by the HSE to patients in the Midland Regional Hospital, Portlaoise. The main purpose of today's meeting is to listen to a number of very important people, the families, parents and patient advocates. I extend a warm welcome to Mr. Ollie Kelly, Ms Amy Delahunt, Mr. Mark Molloy, Ms Róisín Molloy, Ms Sheila O'Connor and Ms Cathriona Molloy. I thank them for coming here at such short notice. I also thank them for their courage in speaking out and being very strong advocates for us as citizens.

Our second session this afternoon will give us the opportunity to discuss the HIQA report in greater detail with officials from the HSE. All members of the committee have been very focused on the report and our primary focus is on the families and parents who have experienced such sad tragedy and bereavement in Portlaoise hospital.

I have stated on the record previously, and I do so again this morning, that there is cross-party support for their tenacity and courage not just in the aftermath of this report being published but beforehand also. We all know that the story of childbirth should be a time of joy but in this case, and in many cases, it was one of loss. We need to allow the parents in this case to have an opportunity to speak to a committee in Oireachtas Éireann, the people's House.

I thank our witnesses for being here today. Our focus will be on the stories that will be told. We will hear first from Sheila O'Connor, national co-ordinator of Patient Focus, which advocated on behalf of many families in the Portlaoise hospital inquiry. We will then hear from the different people involved.

Before we begin, it is important for us as a committee to acknowledge the loss of baby Mark and baby Mary Kate, and the tragic loss of other babies also, whose memory is foremost in our thoughts.

I advise the witnesses that by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to the committee. However, if they are directed by the committee to cease giving evidence on a particular matter and they continue to so do, they are entitled thereafter only to a qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and they are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable. Members are reminded of the long-standing parliamentary practice and ruling of the Chair to the effect that they should not comment on, criticise or make charges against a person outside the House or an official either by name or in such a way as to make him or her identifiable.

As is the custom, I will begin by hearing from committee members after the opening presentations, and then move to non-committee members. I call Ms Sheila O'Connor to make her opening remarks.

Ms Sheila O'Connor

Patient Focus would like to begin by thanking the Chairman, Deputy Jerry Buttimer, and other members of the Oireachtas Joint Committee on Health and Children for their invitation to speak on this important occasion of the publication of the Health Information and Quality Authority, HIQA, report. I would also like to thank the clerk to the committee and his staff for their invaluable help in putting this together at such short notice.

I would like to tell the members about Patient Focus and patient advocacy. Most importantly, I will explain a little about our involvement in the Portlaoise scandal. I would also like to tell them about the beginnings of Patient Focus and what we have achieved through advocacy to date. I have provided a backup document, Problems Patients Experience, concerning the most common problems experienced by people who contact us and how we endeavour to help them through advocacy.

Patient Focus is an Irish national patient advocacy service. We were set up in 1999 and established as a company limited by guarantee shortly afterwards. We have charitable status. We have four staff and are funded by the Health Service Executive, HSE, at the rate of €216,000 per annum.

Why is patient advocacy necessary and what is it? Too many people are injured physically, emotionally and psychologically by health care. That is not widely known or understood. We listen to patients' stories which, sadly, are often chaotic. By listening to them we help them make sense of it. Their journey with us can be as short or as long as they want; it is entirely up to them.

Advocacy can mean something as exceptional and unusual as arranging last week’s meeting of the affected families in Portlaoise. More usually, it means providing assistance with regard to obtaining records, attending meetings with appropriate professionals to discover what happened, explaining processes or accompanying patients to investigations and reviews. All of that involves familiarity with and access to people within the health care system. It also involves working with outside professionals such as counsellors, doctors, coroners and lawyers, depending on the seriousness of the matter. We sit on various reviews at local and national level for the HSE, the Nursing and Midwifery Board of Ireland and HIQA. We give regular briefings to the HSE on the issues that arise. We have constructive relationships with decision makers in the political and health care areas. In this we are unique nationally and internationally.

Our ethos is patient and person-centred. We understand it is very important to listen, to go at the patient's pace and to be led by them at all times regarding the decisions they make. This approach springs from the view that the individual person's dignity, autonomy and power of decision making is protected at all times.

Staff members of Patient Focus have been involved in patient advocacy since 1996. In a short space of time, in the mid to late 1990s, the extent of the damage suffered by some patients became very clear to us.

Sometimes this damage and hurt lasts a lifetime. As we began to listen to many sad and disturbing stories, we resolved that the health care system needed to listen too and to take notice of the damage people experience. It also applies to relatives. It is very important that people find their voice. In the late 1990s, it became clear that people were no longer willing to be written out of the history of the practice of medicine. Damaged patients felt they were placed in corners, forgotten about and treated as an embarrassment by the very people and institutions tasked with their care. In the late 1990s, it also became clear to us that patients’ issues fell into a number of categories and the backup documents I have provided to the joint committee explain those categories. They also relate to all areas of the health service.

I will now talk a little about our involvement with the Portlaoise maternity unit and the people who have asked me to appear before the joint committee today, for which I have been very honoured and thank them. Our staff of four provided support to approximately 200 families affected by revelations about maternity care nationally but most particularly in respect of Midland Regional Hospital, Portlaoise. We met Mark and Róisín in 2012, when they told us the awful story of what happened to their baby. From early 2013, we worked with a small number of bereaved families and mothers to bring to the attention of the Health Service Executive, the Department of Health, the Health Information and Quality Authority and the public what appeared to be the unnecessary deaths of four healthy, full-term infants in Portlaoise. These babies were Mark, Joshua, Katelyn and Nathan. They died during labour or shortly after delivery as a result of oxygen deprivation. Then we heard of Amy and Ollie’s little baby, Mary Kate. These parents will explain much better than I can, during the course of this meeting, how difficult the entire process has been for them.

Stories of damaged babies and injured mothers in Portlaoise, as well as concerns about safety in other maternity units, came flooding in to Patient Focus after the RTE "Prime Time" programme. Within days we had approximately 180 contacts from worried people, 80 of which were from Portlaoise. Other concerns came from units throughout the country including, but not exclusively, Mullingar, Cavan, Portiuncula, Tralee, Letterkenny, Wexford and Sligo. There also were serious complaints about care at the three major Dublin hospitals. No hospital escaped. Heartbreaking stories emerged, some from as far back as the 1970s and 1980s, some recent and others as recent as the previous weeks. What united them is they were all visceral in the grief expressed at the loss or damage to babies. I think any human being can understand that completely. Within days of the programme, the Department of Health set up a scoping review of the hospital and concluded that the maternity unit in Portlaoise was unsafe. This caused huge challenges, both personal and financial, for Patient Focus and its staff. Commitments made at the time in terms of increased funding to cover the cost of increased travel, staff work, etc. have not been honoured by the HSE.

A number of reviews have been established, including HIQA investigations and an internal HSE review into some 200 cases. In some cases, individual clinical reviews were also established as a result of the information that came flooding in. The results of most of these reviews, with the exception of the HIQA investigation, are still awaited. We believe these delays are completely unacceptable. The families present will tell members about the effects of such delays and the energy necessary to obtain a review in the first instance. In Patient Focus, we believe that when adverse events occur, an external review of care should be offered immediately by relevant experts. We believe matters should be explained openly and sympathetically to the people concerned within a month of the occurrence. In the interests of patient safety and learning, the HSE can continue to conduct its own reviews. It became clear to us last week that the first anniversary had been reached for a number of other babies who had died in similar circumstances and the parents still had no idea why their little baby died. Moreover, they are still waiting and probably will wait for a considerable time to find that out, which in my view is completely inhumane.

How did Patient Focus develop and what are our achievements? Many changes have occurred since we began our work, much of it achieved by our clients, although many more changes are still required. Prior to the freedom of information legislation in 1997, Irish patients had no legal right of access to their own medical records. Indeed, such was the lack of interest in this legislation within the public health system at the time and even into the mid-2000s, it was very difficult for any but the most persistent patient even to obtain a copy of their medical records.

Today there is still no legal right to medical notes from private hospitals or institutions, or for private patients of general practitioners. That is totally unacceptable.

In the late 1990s, there was no formal complaint system in operation and often the only way patients could receive answers to their questions was to consult a solicitor. In the late 1990s, members of Patient Focus spoke to staff in the system about the establishment of a patient complaint office. They told us of proposals to establish patient liaison offices but that the word “complaint” could not be used because of strong negative feedback from some staff. Some staff believed “patients do not have complaints” or worried it would just encourage complaints from cranks or disgruntled patients. The expression I have quoted is an exact one heard at the time. Indeed, a medical member of Patient Focus who advocated support for damaged patients at the time was described by some colleagues as a "turkey voting for Christmas". This is not really all that long ago. It was ten or 15 years ago.

At this time, the regulation of doctors was effectively in secret also, behind the closed and secure doors of Lynn House, the headquarters of the Medical Council at the time. Poor performance as a doctor was not medical misconduct so medical error, however serious, could not found a fitness-to-practise inquiry and result in the removal of a doctor from the medical register. However, I am thankful the Medical Practitioners Act of 2007 changed all this. It must be said that this was mainly as a result of patients who persisted despite the huge financial and other risks involved to them and their families. These patients were supported by numbers of doctors and nurses actively engaged in their professional work at the time. This has to be said because it is true. Notably, among these patients are a number associated with groups who came together with Patient Focus to claim their pain and hurt as real and to make sure the system heard them. These are the victims of Drs. Michael Neary, Paschal Carmody and Michael Shine. All three of these doctors have been removed from the medical register for serial professional misconduct of different types.

We supported 200 symphysiotomy patients and are very pleased with the response by our clients to the payment scheme. We currently support people who had the DePuy hip implants and faulty breast implants. There were others also, and it must be said that Patient Focus was building on the work of other groups at that time, for example, Positive Action and Parents for Justice. We also worked with the members of what were to become Dignity 4 Patients and the Irish Patients Association. I should have mentioned the staff of Children in Hospital Ireland. They provided invaluable emotional support and support in many other ways.

Let me outline the main area in which Patient Focus works. In addition to the above, Patient Focus supports approximately 450 patients and their families in obtaining answers to their concerns and complaints each year. This constitutes the vast bulk of our work and it is ongoing. Patients without group support are particularly vulnerable because they are on their own. Sometimes even their own families are unable to assist them. This is where advocacy is most important. The concerns of the group of 450 people arise in all areas of health care, including general practice; public, voluntary and private hospitals; nursing homes and the older people sector; obstetrics and gynaecology; disability; nursing; the ambulance service; and children's services.

Historically in Patient Focus, if one can speak historically about such a young organisation, its role in regard to psychiatric patients was to assist them with concerns over their care in the physical health area. However, in 2014 we received an increasing number of requests relating to the mental health service per se. We help where possible, usually in relation to complaints, but our expertise in this is limited. In the past we did work with the Irish Advocacy Network, which we found very helpful and empathic. However, it does not seem to be funded currently. That is probably the reason for the huge increase.

With regard to the future of patient advocacy, Patient Focus welcomes the HIQA recommendation concerning a national advocacy service. We have been doing this work for almost 20 years with few resources but with some considerable success, of which we are very proud. We have the necessary skills to develop such a service and ask for the committee's active support to achieve this in the short term.

Thank you, Ms O'Connor. I call Mr. Mark Molloy to make his opening statement.

Mr. Mark Molloy

On behalf of Róisín and I, the parents of Mark, as well as Amy and Ollie, the parents of Mary Kate, I thank the committee for the opportunity to address it. In particular, we want to express our gratitude to Deputies Lucinda Creighton and Billy Kelleher for their considerable time and effort outside this forum.

The following is a statement to the Oireachtas Joint Committee on Health and Children regarding perinatal deaths, maternal and infant injuries at the Midland Regional Hospital, Portlaoise and a chronology of documentation relating to wider patient safety concerns.

On the morning of 24 January 2012, our fifth son, Mark, passed away moments after delivery at the Midland Regional Hospital, Portlaoise. In the intervening three years and four months, Róisín and I have fought against continuous considerable opposition to get an answer to our initial simple question - what happened? How did our boy die? It is a question, we now know, following receipt of additional information under freedom of information in April 2014, to which the HSE had answers within days of Mark's death. Despite being informed by the hospital obstetric and midwifery management that the death of a healthy baby during labour was extremely rare, it became apparent to us very early on that we were not the only family whose healthy child had died in similar circumstances at the hands of this and other regional maternity units nationally.

Can I stop Mr. Molloy for one second, please? If there is a mobile phone on, could the person please turn it off because it is interfering with Mr. Molloy's presentation. To be fair to him and the families, it is important they have their opportunity to speak without any outside interference. If there are mobile phones, they should be turned off. I will ask Mr. Molloy to start that paragraph again, please.

Mr. Mark Molloy

Yes. Despite being informed by the hospital obstetric and midwifery management that the death of a healthy baby during labour was extremely rare, it became apparent to us very early on that we were not the only family whose healthy child had died in similar circumstances at the hands of this and other regional maternity units nationally.

Consequently, a huge burden of responsibility became the overriding drive to get action and intervention to save other families suffering the heartache and loss that we were enduring. The details of our children's deaths, injuries to others and the experiences of families in their dealings with the hospital and HSE have been relayed to HIQA and formed much of the basis of their report issued on 8 May 2015. Therefore, we aim to use this opportunity today to set out the extent and steps in which we engaged since January 2012 to bring our concerns regarding the safety of these maternity units to people who had a duty to act and intervene.

In the immediate aftermath of Mark's death, we made a complaint to hospital management at the Midland Regional Hospital, Portlaoise. At every juncture thereafter, as we encountered a lack of action and-or urgency, we continually moved up to more senior HSE management levels, first regionally and then nationally, conveying both our own story and those of others of which we had learned since Mark's death, as well as our fears for the safety of other patients attending the unit. We also sent correspondence and sought meetings with the Secretary General in the Department of Health. At every single stage, we firmly believed we were informing each new level of management encountered of serious patient safety issues of which they were totally unaware.

We later learned of the State Claims Agency's attempt at intervention in 2007, the O'Doherty and Fitzgerald report following the breast cancer scandal at the Midland Regional Hospital, Portlaoise in 2008, staff concerns raised on numerous occasions, the Avalon foetal monitor operational recall in 2009 and update in 2011, the completion of and recommendations from Nathan Molyneaux's investigation in August 2011, and the completion of and recommendations from Katelyn McCarthy and Joshua Keyes' investigations in November 2011. Despite this, our concerns continued to be ignored.

The reaction and intervention noted in the aftermath of the publicity surrounding the death of Savita Halappanavar were apparent. We eventually made the difficult decision after two years of rigidly sticking with the HSE's procedures that highlighting our concerns through media was the only option if any meaningful intervention and-or change were to occur. The following schedule sets out a record of the main correspondence we have on file in the period of February 2012 to April 2013 in relation to Mark's death and our serious concerns for the safety of mothers and babies attending the Midland Regional Hospital, Portlaoise. I will take the committee through the schedule. It is quite long but it paints a picture when one reads it from start to finish.

SCHEDULE OF CORRESPONDENCES IN RELATION TO MARK'S INVESTIGATION and WIDER PATIENT SAFETY CONCERNS

On 22 February 2012, we sent a letter to the manager of the Midland Regional Hospital, Portlaoise and copied the national director for quality and patient safety. It was a letter of complaint concerning Mark's birth and death. The minutes of a meeting we had with the governance of the Midland Regional Hospital Portlaoise are dated 28 February 2012. The subject of the meeting was Mark's investigation. The minutes of a meeting dated 20 March 2012 are for a meeting with the HSE risk manager for the Dublin Mid-Leinster region the subject of which, again, was Mark's investigation. Correspondence dated 1 July 2012 was to the Secretary General of the Department of Health, facilitated through Patient Focus and relating to delays in Mark's investigation and concerns on the maternity service at the Midland Regional Hospital, Portlaoise. On 18 July 2012, a letter was sent to HSE national assistant director for acute services on delays in Mark's investigation and concerns about services at Portlaoise. On 15 August 2012, a letter was sent to the National Perinatal Epidemiology Centre, or NPEC, on the incorrect classification of Mark as stillborn and concerns about the maternity services at Portlaoise.

On 21 October 2012, a letter was sent to the Secretary General of the Department of Health on delays in Mark's investigation and concerns about services in the maternity unit at Portlaoise. On 22 October 2012, a letter was sent to HSE assistant national director for acute services informing him of our decision to escalate to national level due to inaction. On 22 October 2012, a letter was sent to the national director for quality and patient safety on delays in Mark's investigation and concerns about services in the maternity unit at Portlaoise and requesting a meeting. Next is a HSE internal e-mail dated 25 October 2012 from the risk manager of the Dublin mid-Leinster region to the co-chairpersons of the national incident management team, or NIMT, regarding an update on Mark's investigation. Next is another HSE internal e-mail from the national director for quality and patient safety to the HSE co-persons of NIMT on proposed response to the family regarding the concerns raised. Next is another HSE internal e-mail from the co-chairs of NIMT to the national director for quality in patient safety discussing high rates of harm in maternity and other services nationally dated 26 October 2012. Also on 26 October 2012 is correspondence received from the Secretary General of the Department of Health on delays in Baby Mark's investigation and concerns about services in the maternity unit at Portlaoise. Also dated 26 October 2012 is correspondence received from the HSE director general on delays in Mark's investigation and concerns about services in the maternity unit at Portlaoise. On 30 October 2012 there is correspondence received from the national director for quality and patient safety on delays in baby Mark's investigation and concerns about services in the maternity unit at Portlaoise.

On 21 November 2012 are dated minutes of a meeting Róisín and I had with Sheila present with the co-chairs of the national incident management team on Mark's investigation and concerns about services in the maternity unit at Portlaoise. That was a three-hour meeting. On 23 November 2012 is dated correspondence sent to the national director for quality and patient safety requesting a meeting as we were very unhappy with the meeting of 21 November. Correspondence dated 25 November 2012 was sent to the HSE Secretary General on delays in Mark's investigation and concerns about services in the maternity unit at Portlaoise. On 30 November 2012 there was an internal HSE e-mail from the HSE risk manager for the Dublin mid-Leinster region to the national director for quality and patient safety copying the co-chairs of NIMT and the assistant national director for acute services concerning an update on Mark's investigation delays and discussions regarding concerns at Portlaoise.

Dated 2 December 2012 are minutes of a meeting between the HSE director for quality and patient safety with Róisín and I in the presence of Patient Focus on Mark's investigation and concerns about Portlaoise. This was a three-hour meeting, again, which took place on a Sunday just before Christmas in Dr. Steevens' Hospital. Dated 3 December 2012 is a HSE internal e-mail from the co-chairs of NIMT to the HSE national director for quality and patient safety and HSE risk management for the Dublin mid-Leinster region on key actions agreed from a teleconference. Dated 6 December 2012 is notice of a meeting with no minutes received. It is on our file as just notice of a meeting between the HSE director general and the national director for quality and patient safety and it may be that an agenda item was baby Mark Molloy's investigation. Dated 8 December 2012 is a HSE internal e-mail from the national director for quality and patient safety to the HSE co-chairs of NIMT on concerns regarding the maternity services at Portlaoise.

Correspondence dated 10 December 2012 was a mapping document to the HSE, Health Service Executive, advocacy team on non-clinical complaints against HSE response and actions in dealing with Mark's death. Essentially, while there was the clinical investigation going on in to Mark’s death, we were also very unhappy with the way we had been treated to that point. We said people had misled us from day one which needed to be looked into. Accordingly, a separate investigation was launched by the HSE into that.

Correspondence on 13 December 2012 concerned a HSE internal e-mail from the HSE co-chairpersons NIMT, national incident management team, to the HSE national director for quality and patient safely on discussions regarding high rates of harm in maternity and other services nationally.

Correspondence was sent on 11 January 2013 to the HSE national director for quality and patient safety, amending omission from minutes of meeting of 2 December to include review of all perinatal deaths at Portlaoise.

On 13 January 2013, correspondence was received from the HSE national director for quality and patient safety confirming data from Portlaoise would be included as an action item for national director for quality and patient safety.

Correspondence on 15 January 2013 involved a HSE internal e-mail from the national director for quality and patient safety to the HSE co-chairpersons NIMT confirming data from MRHP, Midland Regional Hospital Portlaoise, should be reviewed.

On 13 February 2013, correspondence was sent to the HSE national director for quality and patient safety on baby Mark's investigation delays and the need to act on concerns regarding this unit.

Correspondence on 15 February 2013 comprised a HSE internal document from the HSE national advocacy unit to the HSE national director for quality and patient safety on clinical complaints to be investigated by NIMT to national director for quality and patient safety HSE. The advocacy team sent certain elements on to the director stating it was outside the scope of its investigation and should be handled by the director for quality and patient safety.

Correspondence on 13 March 2013 involved a HSE internal document from the HSE national director for quality and patient safety to the HSE national director for service user advocacy which was a response to above correspondence of 15 February 2013 stating he would take on that role.

Correspondence on 12 April 2013 comprised a HSE internal e-mail from the HSE national director for quality and patient safety to the HSE co-chairpersons NIMT, Department of Health and the HSE head of legal services for a request by the former Minister of State, John Moloney, on our behalf for a meeting with the Secretary General of the Department of Health regarding Mark's investigations and concerns for wider patient safety. The meeting did not happen.

The last correspondence was received in April 2014 regarding a HSE internal document prepared by the director of nursing at Portlaoise hospital on 30 January 2012. It was a desk-top review confirming the reasons Mark died, six days after he had died.

In October 2013, Mark's investigation report was finally completed. Following this, we requested a meeting and met with the HSE national director for quality and patient safety and the HSE national director for patient advocacy to discuss the HSE's plan for the implementation of the 43 recommendations contained in Mark's report which had both local and national service implications. Despite all of the foregoing meetings and correspondences set out, the numerous other correspondences, phone calls and meetings, coupled with the completion and findings of the investigation, both said they were there to listen to our story. At that stage we made the decision to speak to RTE's investigations unit.

Following the “Prime Time" investigation unit's programme which aired on 31 January 2014, Patient Focus received in excess of 180 calls from concerned parents. We were contacted directly by Amy and Oliver whose daughter, Mary Kate, had passed away in May 2013 in similar circumstances. We were also contacted by Nicki and David Reddington whose daughter, Síofra, passed away in February 2013 and another couple whose son received a severe birth injury in November 2013. All of these birth outcomes were after the above highlighted correspondences and meetings.

The harrowing stories of the many people who spoke of so many deaths and life-changing injuries at the meeting with the Minister for Health, Deputy Varadkar, last Wednesday, 13 May, after years of uncanny accounts of being misled, ignored and silenced by the HSE, disclosed the extent of the depths of this scandal.

We conclude by stating we vehemently disagree that this scandal was the result of ignorance or a "lack of escalation". There appears to have been an attempt at both local and national level to suppress repeated known red flags, which perpetuated failings, leading to repeated deaths and injuries, at huge emotional, physical and financial cost to families and patients.

Ms Delahunt will put the following recommendations to the committee.

Ms Amy Delahunt

As the mother of Mary Kate who died in May 2013, with the other parents in question, I demand to know how her avoidable death and the deaths of others were allowed to happen. The HSE must stop misinforming the public that these issues were not escalated nationally. The director general of the HSE must stop misinforming the public that these events occurred before his time in the HSE. Following the assertions made in HIQA report that financial matters were prioritised over all other considerations within the HSE, can the committee establish why funds from the HSE's budget are continually used to employ legal teams and senior counsel to limit the scope of inquests and any derived learning and why patients were continually encouraged to go down the route of litigation, thus invoking section 48 of the Health Act which states any matter that is or has been the subject of litigation cannot be investigated by the HSE?

Given this presentation, the Minister must initiate an investigation into all levels of HSE management relating to this scandal. This HSE management team is clearly incapable and cannot be trusted to implement the recommendations made in this or previous HIQA reports.

I thank Ms Delahunt, Mr. Molloy and Ms O'Connor for their presentations. Representatives of the HSE will appear before us this afternoon and have the right to reply. I will move to questions from members of the committee.

I welcome our guests and thank them for their presentations. I wish to be associated with the Chairman's opening remarks on what they have experienced personally through their tragic losses at the Midland Regional Hospital, Portlaoise. HIQA produced a report on maternity services and services more broadly at the hospital that makes for very difficult reading, even when one removes oneself from the emotional aspect, in terms of management and how the hospital was run and supported at regional and national level. It was said red flags were being raised and alarm bells were ringing, but it seems that they were continually ignored.

It is always said when issues such as this arise that it is a question of systems failure, but if we continually blame the system, we will never start to address the problems that may be endemic in organisations in people not believing they have responsibility or accountability when things go wrong. As evidenced by HIQA's report and given the testimony of our guests, there was sufficient information flowing from them, others and staff at the hospital to senior management at local and regional level to suggest it could not state it was unaware of the inherent dangers in maternity services and the hospital.

I do not want to ask a leading question, but did Mr. and Mrs. Molloy ever believe the HSE was genuinely interested, or was there a pretence that it was trying to assist and listen to them? Did they always believe barriers were being placed in front of them or did they have the sense that the HSE was genuinely interested in listening to what they had to say and trying to address the problems they were highlighting in the context of their tragic case and broader services at the hospital?

Do Mr. and Mrs. Molloy think they were led up the garden path by delays and prevarication in the hope that they would eventually go away or was genuine empathy shown at any stage in the process?

None of us would be here today but for the tenacity and bravery shown by the families concerned. Equally, however, if "Prime Time" had refused to take the telephone call from the Molloy family, HIQA would not have carried out an investigation of Portlaoise. This is a matter of concern for me because when families undergo terrible experiences, I would expect the system to kick in with a thorough analysis of what went wrong and how it can ensure such experiences do not happen again. Ms O'Connor's comments on the interaction between Patient Focus and the HSE in advocating for patients who were damaged by the health services suggests an inherent resistance to openness. This committee has previously discussed the question of developing transparent policies for dealing with patients who have had adverse interactions with the HSE. These policies do not seem to be progressing. The correspondence between the HSE and Mr. and Mrs. Molloy suggests this attitude lasted almost until the broadcast of the "Prime Time" documentary. This attitude is also evident in the chief medical officer's report and recommendations on Portlaoise. It should be a cause of significant concern for anyone who wants the HSE to provide safe maternity services that some of these recommendations have not been implemented.

Do the witnesses believe the HIQA report reflects their experience of dealing with the HSE in regard to the immediate problems with maternity services and the death of baby Mark and their subsequent dealings with local management? Do they think the report is deficient in any aspects? It is clear that alarm bells were ringing in the hospital for a number of years. Last week representatives from HIQA told us they had been investigating the hospital. I asked why HIQA did not carry out an investigation prior to being requested by the Minister for Health to conduct a full investigation under section 9 of the Health Act 2007. Can we learn anything from this sequence of events? What should be done to ensure the witnesses' experience is not visited on any other family not only in terms of the provision of maternity care but also in the subsequent experience of engaging with the health service?

Do the witnesses believe a statutory patient safety authority could play a meaningful role in facilitating other families who have had adverse encounters with the HSE to come forward with their experiences? Have the Molloys encountered any significant change in their dealings with local management at Portlaoise hospital between the time of baby Mark's death and the present?

I join the Chairman in welcoming the witnesses and thank them for their contributions and written submissions.

I am very conscious, as we all are, of the great pain the families have suffered, but we are also conscious that there are many others who will watch these proceedings either now or perhaps later as the day progresses. We send our sympathy to and express our solidarity with all of those families, some of whom I know personally.

On the statements which have been read, I will make a number of points and ask some questions.

I am sorry to interrupt the Deputy, but I forgot to do this at the beginning. To help the families, I ask members to indicate when they are putting a question. I will take three members together as it might be difficult for our guests to take notes.

That is helpful. Mr. Molloy made the point that it had become apparent to him at an early stage that his was not the only family whose healthy child had died in similar circumstances. How did it become apparent? From what engagement did it become apparent? How did it come to his attention?

Mr. Molloy made a point about each new level of management as he progressed from local and regional to national level and said it was clear to him and Ms Molloy that they appeared to be totally unaware of the serious patient safety issues involved. Did he believe that that was the case? Were they being less than upfront and honest or does he believe, therefore, that there was a suppression of the facts and the information at a level closer to the hospital and that it was not making its way up through the structures?

I refer to the point made about the engagement in October 2013 and I am conscious in referring to it that the experience of Mr. Kelly and Ms Delahunt happened earlier that year when they lost Mary Kate in May, a full 15 months following Mr. Molloy's tragic loss. There was the further case of the Redington couple and that of another couple. Apart from the known number of losses, there were a multiple of cases in which bad outcomes were a reality. While I do not in any way seek to reduce attention on the fact that five babies were lost, lives were also seriously impaired in a significant number of cases. Can he shed further light on this?

Mr. Molloy's decision to go to "Prime Time" was triggered by a meeting with the HSE national director for quality and patient safety and the HSE national director for patient advocacy. Can he identify whom he met? If he cannot, I will understand, but the two positions were national director for quality and patient safety and national director for patient advocacy. Despite the fact that the purpose of the meeting was to discuss implementation of the 43 recommendations contained in Mr. Molloy's report, all they had to say to him was that they were there to listen to him. That is not a discussion. That was totally and absolutely outrageous. In some way, their almost monkey-like see, hear, speak, know, etc. approach has done us all a service because it was the trigger that directed him in his frustration to go on the national airwaves, for which I thank him sincerely.

Mr. Molloy's closing comment about an attempt at both local and national level to suppress repeated known red flags is a very serious matter. Many of us are parents and have gone through the experience of childbirth either as the woman or as a partner in support. This is of major importance to each and every one of us and for our children, who may become parents in their own time. It is very important that the learning takes place.

I refer to what Ms Delahunt said, which was very important, about the extent of funding being directed to legal voices to limit inquests scopes and, most importantly, therefore any derived learning. I am making the link between both points by Mr. Molloy and Ms Delahunt because it is the learning that needs to happen. It needs to inform a system that is clearly deficient in so many ways.

That is not to take away from the many excellent people who work in maternity units throughout the country and are giving a first-class service, but there are deficiencies. There are clearly deficiencies within the reporting process and the address of these exposed deficient practices by virtue of the fact that there is no learning taking place. The sad reality is that any of the witnesses' experiences could be repeated today in any number of settings as a consequence. Therefore all the more important it is-----

The Deputy is up to seven minutes.

I will close with a last couple of points. I thank Ms O'Connor for her contribution and I commend, as I always have, the work of Patient Focus. She listed a number of hospitals throughout the country that had contacted Patient Focus, following the RTE "Prime Time" programme. She added a very important point about which some of us as members of this committee had been concerned heretofore, which is that these incidents and concerns are not confined to hospital maternity units outside major urban areas. She stated, "There were serious complaints too about care at the three major Dublin maternity hospitals". I ask her to elaborate on that because it is very important. There may be a section of the community which says this is only about Portlaoise, Cavan, Portiuncula or whatever, but it is an issue that every citizen, and in the first instance every mother and prospective mother, should be exercised about. It is imperative that this is addressed universally across the board. I ask Ms O'Connor to elaborate on that.

I refer to the delay in the publication of reviews, as highlighted in Mr. Molloy's report. There was a delay even in the HIQA report with a possible further delay in terms of threatened legal action with the possibility that it would not proceed. I am deeply concerned in my constituency that even though we have had four tragic outcomes, just one fewer than the experience in Portlaoise, we have still to see published a single report on any of those, going back to baby Jamie Flynn in November 2012. That report was suppressed through the courts. The second report is yet to show.

What of the internal HSE address of the tragic outcomes in April and May 2014? We are a full 12 months on. How long does it take for the learning process to get under way? The publication of speedy reports is vital. I ask Ms O'Connor to elaborate on that.

I offer my sincere thanks to all the witnesses.

I am conscious of the fact that there is a large number of members present who wish to address the committee on this issue, so I will be as brief as possible. I thank our guests and welcome them. I sympathise with the families. We owe them a debt of gratitude for highlighting these issues in difficult circumstances and against all the odds.

The HIQA report is shocking. It is difficult to believe the degree of failure at all levels throughout the service, local, regional and national. It appears that, at each level, the families were deliberately blocked when trying to establish what happened in their circumstances. Previously, I raised a question that needs to be asked again and needs to be answered, that being, whether the HSE is fit for purpose. Is it fit to organise and maintain medical and hospital services? Undoubtedly, the report is a damning indictment of the HSE at all levels.

I have one or two questions. Are the families happy with HIQA's report and recommendations? Are there recommendations that are not in the report that the families want prioritised? The report is excellent and shocking, but it has at least one deficiency relating to the recommendation on advocacy. I am strongly of the view that there should be an independent statutory advocacy agency or authority. It should also be independently funded. I am not criticising Patient Focus, but many advocacy agencies - I have been through this issue in terms of mental health services - are funded through the HSE. An independent statutory authority that is funded independently is necessary to ensure patients are properly represented. How does Patient Focus view this issue?

I am conscious that four committee members and one non-member have indicated. I will hand back to Mr. Molloy and whoever else wishes to speak.

Mr. Mark Molloy

Regarding Deputy Kelleher's first question on whether the HIQA report reflected our experience, it does absolutely. For me, what jumped off the page straight away was the fact that the HSE was aware at local, regional and national level that this was an unsafe unit. Members saw from the schedule that I went through that we had been screaming about this for 18 months through meetings and so on but the HSE did nothing about it.

The HIQA report reflected a dysfunctionality in various management levels, particularly regionally. We met various people who seemed almost unaware of the HSE's policies and procedures in the investigation of an adverse event such as our baby's death. They genuinely seemed not to know how to handle this investigation in accordance with their procedures.

In that regard, the HIQA report reflects exactly our experience during the period from January 2012 until publication of the report.

Ms Róisín Molloy

It is important to note that we met with officials at every level, to whom we believed we were bringing new information in regard to what was happening at each level below. We met with management, who told us there were no policies or procedures in place which allowed for an investigation into Mark's death. Our response to that was, "Oh my God" because we knew that was not true. We then raised at regional level local management's opinion in regard to its carrying out an investigation into Mark's death. We knew fairly soon into the process that people were only paying lip-service to us. While during many meetings people were very emotional when apologising to us and saying that they were sorry about our son's death no action was being proposed. What we wanted at that stage was an acknowledgement of Mark's death and the seriousness of it and to prevent this from ever happening again. However, the importance of learning from Mark's death to ensure this did not happen again was completely lost on every member of the HSE. We kept going. We utilised the HSE's systems to have Mark's death investigated and to highlight patient concerns in Portlaoise hospital. We followed the HSE system, from which the HSE constantly departed.

Mr. Mark Molloy

In regard to the point about alarm bells ringing with the key stakeholders, I have previously made the point, although not here today, that I do not believe anybody involved in this area has covered themselves in glory. We know that the State Claims Agency highlighted its concerns about the hospital in 2007 and that the INMO, on behalf of the midwives, had issued letters stating that the unit was unsafe and that a baby was likely to die as a result. The Department of Health and the HSE were also clearly aware of the situation as, I am sure, were various other interested parties. However, there was no coming together of that shared information. The issue for the State Claims Agency was whether there was under-reporting at Portlaoise hospital because it was not receiving as many reports about it as it was receiving in relation to other units. However, there was no coming together of the agencies on the issue. There are many stakeholders in this country involved in providing us with a decent health service, all of whom knew what was going on. They had a far greater platform than Róisín or I to tackle this issue yet all they did was issue a couple of letters about it. That is not good enough. Every key stakeholder in this country involved in the health sector needs to get involved in this if it is to be properly cleaned up.

In regard to the question about local management change at the Midland Regional Hospital, Portlaoise, I will never again set foot in that place. To be honest, I have no idea if there has been any change.

Ms Róisín Molloy

Deputy Kelleher asked about HIQA investigating individual complaints. We highlighted our concerns to HIQA but it does not have the power to investigate individual complaints. We thought at that stage that we were on our own. It is difficult to have individual cases addressed. It later became apparent that we were not on our own and that there were numerous other cases.

How long did it take the witnesses to establish that they were not on their own?

Ms Róisín Molloy

I have been told that it is normal in such situations for people to go into shock and that, when grieving, people can be stunned into silence. Unfortunately for the HSE, I went in the opposite direction and became the crazy mother telling everybody that my child had died when he should not have died and highlighting safety concerns in regard to the maternity unit at Portlaoise hospital. People then started sharing their stories with me. Baby deaths is not an issue that, I believe, people like to talk about. Neither Mark nor I would have talked about it. It is an issue people are not happy to talk about. However, when I started talking about it, it became apparent that there were other people in our local area who had not only experienced deaths at the hospital but had had very horrific experiences there and were treated similarly to us.

On the issue of baby deaths, we became familiar with two local people who had had a similar experience to ours, whose experiences are not in the public domain. I then heard the interview on the radio with Joshua Keyes' mother, Shauna, following which, when doing research into how I could have baby Mark's death investigated I came across a paper in the UK on Nathan Molyneaux's death. At that point, we knew that we were not on our own.

Mr. Mark Molloy

Deputy Ó Caoláin asked about each new management level and if we were aware of them or believed them. Very early on, as Róisín will say, we were very upset at these meetings and we would believe anything we were told. We had to learn to swallow it if we were to get some answers. We came away from many meetings saying, "That is it now, somebody is going to learn from this, we will get answers, it will be great". Suddenly, weeks would go by and there would be no answer or action. Once the Savita Halappanavar story broke, we knew there was a reaction. Mark had died nine months earlier and the HSE had told us we could not do this or that and policies had not stated this, that or the other. Suddenly, there was a total departure and an ad hoc reaction to Savita's death. It took ten weeks to nominate an obstetric consultant externally for Mark's investigation and it took four days in Galway. Mr. Praveen Halappanavar's account of events were seen as central but we were not allowed participate in Mark's investigation.

Will the witness explain what he means in saying "not allowed"?

Mr. Mark Molloy

We were told it would be based on the clinical notes and interviews with staff. These were clinical notes we had already proven were changed. We had the before and after. Somehow we got those. Eventually, our input was linked to a chronology of events. It took six attempts for them to transcribe what I sent in. They kept taking poetic licence with what I was sending in. We went back and told them it was not what I said and that I had said something else. Eventually, it was right.

Was that written testimony?

Mr. Mark Molloy

Correct.

You were not invited into a room to have a conversation.

Mr. Mark Molloy

We had that as well. Originally, we asked if this could be given over the telephone because we were given a very short timeframe to respond. We were told it had to be submitted in writing by a particular date. We worked through a 36-hour session and submitted it at 11.56 p.m. one night to get it in on time and meet the HSE date so it would get back to us on time. The HSE just dragged it out.

When the Savita Halappanavar story broke, it became very apparent to us that we were being paid lip service and being dragged along. I described this in the past as an attrition policy. Eventually, if people are worn down, they will go away. We got to that stage a couple of times. We were asking questions and sending an e-mail at 4 a.m., saying, "Jesus, we cannot do this any more". I will get upset when I say this but Mark hung on longer than he should have to be born alive, the one minute of life he had. We said there was no way we would give up on it.

Ms Róisín Molloy

To back up what Mark said about our involvement with the HSE investigation, the executive's policy indicates that families would be encouraged to take part with regard to a chronology. In reality, it does not work like that. It is like a token participation in an investigation. It should be noted that Mark's investigation is the only one of its kind into a baby death in Portlaoise hospital. The rest of the investigations were reviews done internally, and the parents did not have any knowledge of them. As yet, it is the only report into a baby death at Portlaoise hospital and we drove that report to completion. It should also be noted that one of the external experts brought in by the HSE did not get our account of our labour but just the chronology. The notes used were the changed notes and the copied notes were not used in the investigation. We only received a copy of the original notes under freedom of information after the "Prime Time" programme. Through a HSE investigation and inquest, the notes used were the doctored notes. If we had not driven and forced the process, Mark's report would never have been finalised-----

Could I just advise you to withdraw the word "doctored", if you could?

Ms Róisín Molloy

I am sorry. I withdraw that. The notes were changed.

Thank you.

Mr. Mark Molloy

At Mark's inquest, the particular person giving evidence did say that he changed Mark's notes six days after Mark's death. He said it at the inquest in Portlaoise.

We will have representatives of the HSE in later and we will put that to them. I am sure it will be part of that discussion.

Mr. Mark Molloy

Deputy Ó Caoláin asked about bad outcomes. We are speaking about five baby deaths.

At the meeting with the Minister for Health, Deputy Varadkar, on Wednesday in Portlaoise, there were 120 people in the room. Person after person told stories of their baby's death or cerebral palsy injury or horrific injuries that mothers were left with. This is not a figures game but the figure is far in excess of five baby deaths. People spoke of 1986. Two babies were lost to one couple in 1997 and 1998 while another couple lost two babies in the 2000s. Right through that period, including the boom years when we had a few bob, this was going on. A consistent theme emerges throughout. People were told: "You are the only person this happened to. You are very unfortunate. Go away, you will have more children." The same theme emerges and the number is far more than five babies.

Ms Róisín Molloy

On that note, it is advised that medical staff notify the National Perinatal Epidemiology Centre, NPEC, in Cork of incidents as it collates the statistics on baby deaths, near-deaths of mothers and maternal deaths. It should be noted that Mark's case was not reported to the NPEC. Mark was wrongly classified as stillborn even though he had been born alive. He was not reported to the NPEC and had we not pursued that issue and had it changed, he would not have appeared in any of the statistics. That is why we have strongly argued that there is a need for proper statistics and real figures relating to maternity services in Ireland. Such statistics cannot be based on volunteered information when there are babies missing.

Mr. Ollie Kelly

I join Deputies in congratulating the Molloys on what they have done. Unfortunately we are here as evidence that management and staff of the HSE failed to listen or to follow recommendations from inquests and from the report into baby Mark's death. Had they listened, our little girl would be here today. So too would baby Síofra and the damage done to another little baby would have been avoided. It has been tough on us to come in here today. I ask Deputies to bear with me because I am a little nervous.

We, like all other families, were led to believe that we were the only ones. I have heard Mark and Róisín Molloy speak about trying to make the services better. We met hospital representatives in December after Mary Kate passed away. They led us to believe we were the only ones and that they never wanted to see anything like this happen again in Portlaoise. We found out later, through the investigation into Portlaoise, that there were many baby deaths. In the period between baby Mark's death and the death of Mary Kate, another baby died. Ours is known as the fifth case but another little girl died in November 2013.

At all levels there were opportunities to learn, flags being raised and alarm bells going off but they failed. They failed us and they let us down unbelievably when Amy went into that hospital. A hospital is supposed to be a safe place; it is where you go to be cared for but she was not cared for. The fact that management knew that the hospital was unsafe but let that continue is unforgivable. Deputies spoke abut Cavan General Hospital and other hospitals throughout the country. The HSE has governance over all of the hospitals but it let this happen. That is so hard for us to cope with.

Mr. Mark Molloy

I wish to back up something Mr. Kelly has said by referring to the e-mail schedule I went through earlier. It answers the question as to whether the HSE is fit for purpose. I will not mention any names but one of the e-mails reads as follows: "I know you are aware that the high rates of harm that I allude to are reflective of what is occurring in other jurisdictions also." I stress the phrase "high rates of harm" as opposed to the "best" and "safest" country in the world in which to have a baby. The reference is not to "average" but to "high" rates of harm. This e-mail was written in December 2012 by the people who are responsible for the safety of all hospital services, not just maternity services, in Ireland.

That was the way those who were responsible for safety in all hospitals, not just maternity hospitals, spoke about this in December 2012, five months before Mary Kate died. It was absolutely disgraceful.

We will deal with that matter in the afternoon.

We will not do that now; we will leave it until the afternoon.

Is that the answer in identifying the two senior directors? Does Mr. Molloy feel he is not in a position to identify them today?

Mr. Mark Molloy

I suppose so.

Nevertheless, it is not beyond our gift to establish who they were.

Mr. Mark Molloy

It is one national role.

Thank you, Mr. Molloy. Is it possible Ms O'Connor might respond to the questions put to Patient Focus?

Yes, but I am conscious that seven other members wish to speak.

Ms Sheila O'Connor

I will be brief. I think HIQA's report reflects exactly what happened in the Midland Regional Hospital, Portlaoise, but I will go a great deal further and say it probably reflects what happens in most hospitals in the country. I was horrified at and shocked by the reaction of the HSE a couple of months back to the imminent publication of HIQA's report and its denials of patient stories, as if they were fabrications. They were the same stories we had heard morning, noon and night during the course of the past two years. For the HSE to imply that the parents were wrong, that they were over-emotional and that there was a lack of due process is an absurdity. I really find it very difficult to take that on board.

The structures in the hospital clearly had not worked. What both families are saying about the complaints process is correct. When Mr. Mark Molly said he and Róisín Molloy had got a good review, they were correct. In fact, they got a spectacular review in comparison to any other patient that we in Patient Focus had ever dealt with. That was as a result of their tenacity and courage in standing up for their baby. In our opinion, it is undoubtedly true and I do not think anybody who knows anything about this can contradict that view. It is totally true. Ms Róisín Molloy gave a description of being considered a crazy mother. If we had one pound for every time we listened to a patient tell us that they were considered to be "a crazy person, that I am this and that", Patient Focus would have a great deal of money. That is the standard reaction to bad events in a great many hospitals in the health care system. Sad to say, but it is true that the issue of safety is not taken seriously. It is a Cinderella process within the HSE. It is not true to say HSE personnel do not listen. They certainly do listen and hear, but they do not take on board, emotionally or psychologically, what is said. It is a self-defence mechanism that clicks in when they hear about terrible stories and they feel at some level that they may be or held personally responsible. They want to be able to go home and sleep at night; therefore, they do not take it on board.

On what should happen in terms of accountability, I have concerns, as one frequently finds, that the good people leave. I was very worried about the incentivised retirement scheme for HSE employees a number of years ago. It is true to say, from the experience of those involved in Patient Focus, that the best people, the ones who had supported Patient Focus, walked out the door. They have got jobs in other areas since, which is a terrible loss to the system. The people most interested in patient safety took a hike. I do not know if my colleague, Ms Molloy, agrees with me, but I think that is true. They were quality people who could go elsewhere.

People in the HSE have no power and the description of the complaints process brings this into stark relief. The complaints process is about following due process for staff; it is not really about finding out what happened. That is the reason it takes so long. People get up on their horse, go to the trade union, professional bodies or lawyers, or they go sick. Every single possible strategy an individual can use to delay things is used.

This should be about finding answers for people who have had dreadful experiences, but it is not. That is the reason external reviews should be conducted and answers provided quickly for those who have had bad experiences. That is not too much to ask.

The health care system is spectacularly bad at dealing with bad events. I do not know what that comes from, but it is part of our culture and history. It is part of the major power structures still within society and the general population are perhaps afraid of them. In the health care system there is a dependency relationship between the patient and the professional and the one thing people do not want to take on board is the fact that perhaps they were let down by their professional. It is incredibly difficult to take this on board. I do not wear hats, but if I had one, I would certainly take it off to the families here. The Molloys jumped on board immediately and sussed out exactly what had happened. Emotionally, it is incredibly difficult to do that and remain intact psychologically.

There were a few other questions. Deputy Caoimhghín Ó Caoláin and others raised the issue of a patient safety agency. Patient Focus has always been in favour of having a statutory patient agency authority. I was on the board of HIQA for a number of years and during that time I grew to have huge admiration for the former CEO. The other day I saw Mr. Phelim Quinn on television at the launch of the report and, to be honest, I thought to myself, "I would not like to get on the wrong side of that man." That was my gut feeling in terms of his body language and demeanour. That is my personal view which I have not discussed with anybody in Patient Focus. Mr. Quinn means business in bringing about a cultural and mindset change in the health care system in Ireland.

Things are much worse in private hospitals.

That would be for a different forum.

Ms Sheila O'Connor

My apologies. On advocacy, HIQA does not have authority to look at individual cases. I believe HIQA was very concerned at the prospect of a patient agency dealing with individual cases and how it would impact on its role. Perhaps that is something people should consider in the context of setting up a separate statutory agency. Perhaps Ms Cathriona Molloy might like to contribute something now.

Is that okay or do the delegates want to take a break?

Ms Cathriona Molloy

The day the "Prime Time" investigation unit's report on the HSE was broadcast, 31 January, was a very sad day for me because it was 18 years on from being a patient of Dr. Neary and the fact that these incidents were happening was very emotional. As Ms O'Connor can tell the committee, on that day I had a row with the HSE because it had not published information on a helpline. RTE wanted information on a helpline to be put up that night, but the HSE refused to do so because it stated not many people were affected. We had no choice but to put up the Patient Focus number and there was a row because we did this. We worked all evening and all-----

Where did Patient Focus publish its number?

Ms Cathriona Molloy

We put up the Patient Focus number on RTE. As soon as the programme was over, we got an e-mail every time somebody left a phone message. The e-mails were flooding in and it is difficult to express the grief shown in them. We were shocked by the response and the fact that the HSE did not recognise it is scary. The battle patients face to get answers was wrong and disgraceful. The balance of power is weighed towards the professionals, not patients. It is those who are investigated who are listened to. Blocks are put in the way of those seeking answers.

I met Róisín and Mark Molloy in June 2012. When I returned home the next day, a Saturday, and spoke to Ms O'Connor on the telephone, I told her that there were problems in the hospital. I said the same to my husband, who came with me that day. I said I was extremely concerned about the situation because it was like hearing similar stories all over again. I took two memories away with me that day.

The first is of listening to Mark describe standing in the theatre when baby Mark was being born and the second is of Róisín sitting on the stairs waiting to get a letter with answers. How can that be justified by anyone?

Patient Focus has been doing this for such a long time and we know that there are complaints in all maternity and general hospitals and the community. Ours is a small organisation of four people with a very limited budget. We do the job on a shoestring and the only reason we do it is we are passionate about it. A person could not do this on a nine-to-five basis. We work nights and weekends and jump to the support of people because that is what we want to do. Then we hear what happened to Ollie and Amy, Joshua Keyes and baby Katelyn. To be clear, the way we found out there were two other reviews carried out at Portlaoise hospital of the deaths of Joshua Keyes and baby Katelyn was through the legal process of the inquest. The HSE's barrister had to hand over the reviews. He handed over the one that mentioned baby Joshua, but the others were blacked out. We knew that there were two other babies, but families were not notified. When the "Prime Time" programme was broadcast, they were told it was because of social circumstances that they were not told. Everyone has a right to be told if there is an adverse incident.

This committee has power. It must never allow this to happen again. It is just not on and not good enough that this continues to happen and patients have such little power.

I thank Ms Molloy. I will take the next three speakers and then go back to the delegates. We will then hear from three further speakers and two non-members. I ask members to have questions rather than commentary because there is a lot to get through. I call Deputy Mary Mitchell O'Connor, Senator Colm Burke and Senator John Crown in that order.

I thank the parents so much for coming. We have had different groups here, but this is probably the most harrowing day we have had. It has been mentioned that a hospital should be a safe place and I understand it should be safe. At the same time, there is human error and things happen that should not. I get the feeling that none of the delegates wanted to blame anyone in particular on the day, yet they have been treated so badly. Will they comment on this statement?

Mr. Ollie Molloy perhaps said it all when he said he had come to give his evidence and asked what would happen next. Those working in theatres and maternity units where babies are being born should do their jobs to the best of their ability. Things happen and things go wrong, but when it is over, there should be a no-blame policy. People should put up their hands and not drag parents, patients and others through the courts. The delegates said they had to use the freedom of information regime to get answers. They have been treated appallingly. What is really sad is that there are many other patients who have been treated as badly.

I asked last week and ask again now what, in the name of God, the people on management committees at local level were doing. They seem to be reporting to a hospital committee. We can blame the HSE. By God, it is not covered in glory and its representatives will be here later. However, if something can come out of this process, staff in hospitals - doctors, nurses, anaesthetists, whoever they are - should do their jobs and if something goes wrong, they should have empathy and deal with people in a humane way. When a woman goes into hospital to have a baby, she is so vulnerable and expects people to help her. She needs help. The people in question are all paid. This is not voluntary work and many of them are well paid. They should do their jobs professionally and when it is over and if mistakes have been made, they should, at least, treat people humanely and with empathy rather than covering up, running for cover, being afraid of being sued and so on.

I thank Mr. Mark Molloy, Mrs. Roisín Molloy, Mr. Ollie Kelly, Ms Amy Delahunt and Ms Sheila O'Connor for their presentations. I know that matters have not been easy for our guests and that the past three and a half years have been tough. I hope the fact that they have managed to reach this point means that a great deal will be achieved in ensuring change.

I wish to put a question to Ms O'Connor of Patient Focus in respect of the reference on page 71 of HIQA's report to a 2006 review of the maternity department at Portlaoise hospital, which identified the need to appoint more midwives and clinical midwifery managers. This recommendation was not acted on until 2014. Given her experience of dealing with patient complaints, does Ms O'Connor find that understaffing and the use of locum and agency staff are contributory factors in many of the issues affecting the health service? I accept that I am moving slightly away from the matter under discussion, but eight years passed until there was a reaction in respect of the 2006 review. Are difficulties arising because too many locum and agency staff are being employed and as a result of the fact that not enough is being done to plan for the appointment of sufficient numbers of permanent staff?

Ms O'Connor referred briefly to the voluntary hospital sector. Does she find that a clear line seems to have been drawn between management within the HSE and medical and nursing staff in trying to deal with and manage complaints? There are certain people who seem to be prevented from dealing with complaints and actually should be on the front line in this regard. As a result of their absence from the process, inadequate explanations are being given. This would not be the case if all of those involved worked together and if a line such as that to which I refer had not been drawn between them. Will Ms O'Connor indicate whether there are differences when it comes to dealing with complaints relating to HSE hospitals and those involving voluntary hospitals? There is a master in each of the three maternity hospitals in Dublin and, in real terms, the buck stops with these individuals. Is there a significant difference between the HSE and the main maternity hospitals in Dublin?

The report before the committee highlights the problem of understaffing. During the past three to four years I have consistently referred - I apologise for doing so again - to the Hanly report of 2003, which clearly set out that there should have been 190 obstetricians and gynaecologists in the health service by 2012. On paper and according to the HSE there are 133 such professionals operating within the health service. In fact, there are only 104 whole-time equivalents. Is Ms O'Connor of the view that there is a need to expand the role of nursing staff and midwives and appoint more consultants rather than relying on the services of junior doctors?

I extend my sympathy to the bereaved and those who have suffered such terrible losses. I cannot begin to imagine the pain they continue to experience which has been compounded by certain factors which came into play following the deaths of their children. What they have endured is simply horrific.

I am terribly sad about the position in which our guests find themselves and I am also somewhat despondent about the remedy on offer. I have been back in Ireland for 22 years and it is apparent to me that there are really significant problems with the health system which I have been trying to highlight for a long period. The committee will be discussing this matter later in the afternoon, at which point I will be asking some very hard questions and making a number of extremely tough suggestions.

The notion of a cover-up is absolutely plausible to me. I have seen evidence of cover-ups within the health system on many occasions. A year after I returned to Ireland I discovered that the cancer service here was utterly abnormal by any international standard and began to make waves about the matter. Serious attempts were made to shut me up and have me disciplined or even fired. If I had not been operating under the old consultants' contract, after completing the first year in which I had security of tenure, I have no doubt that I would have been fired.

I recall going to meetings with senior figures of the Department of Health when this became a big news story after two or three years and I started rattling the cans. I was told they would try to do something about it but that I must shut up. I must not go public about it because the Minister did not want to read any more accounts about people dying unnecessarily from cancer treatment. When the Limerick cancer services disaster happened, a doctor on the ground, who saw real problems with the service, went to the Department of Health a long time in advance of it becoming public. The person in question had a position of responsibility in the Department and is someone who has often sat in these chairs. Nothing was done, though, and the doctor was subtly threatened. He was told that the course of action he was taking was inappropriate and it was suggested he should be the subject of disciplinary censure himself for not going through other channels. As a result, he shut up pretty quickly.

Why does this happen? The problem is that the collective health administration, the leadership class in the health service in this country, namely, the HSE, the Department of Health and even HIQA, has a corporatism about it. They see "us" and "them". "Us" are the only non-self-interested party in the whole potpourri of those competing interests who have their paws out for something. They believe they are the only people in the world, not just in the Irish health system, who are capable of acting without self-interest. In fact they do act out of self-interest. Their constituency is complicated by the fact that, while there are both "us" and "them", there are two different kinds of "them". On one hand there are the "them" who represent the patients who have suffered and who have asked for adequate resourcing and appropriate answers to harsh questions. On the other hand, there are the "them" who are the doctors, nurses and midwives who point out the deficiencies in the system but are dismissed as being shroud wavers. I was horrified to read in black and white today that folks in the Coombe hospital were raising issues which were clearly being ignored.

Where does the responsibility lie for this? I have given the Neary episode so much thought over the years. What an awful tragedy to be visited on people.

The Senator's time is up. Also, a telephone is buzzing.

It does not appear to relate to any of my material. I do not think it can be my pacemaker. I believe I can give that a few more years. How long do I have? I was told I had six minutes.

No. Spokespeople get up to ten minutes, non-spokespeople four minutes.

I did not know we had spokespeople. I am sorry. I will finish very quickly. In the case of Neary, responsibility was put onto the individuals who carried out the terrible, awful practice but there was something wrong with a system which allowed somebody to act, effectively single handedly, way beyond their competence and their surgical skills in a hospital which did not have an intensive care unit, a blood bank or any of the things it needed. It did not have appropriate levels of peer review which would have found that there was something wrong with this man and that he needed to be stopped. Not only does the responsibility devolve on him, it devolves on the system.

The case of Savita Halappanavar is telling. When that awful tragedy occurred, two and a half years ago, I pointed out that, from what I had read about it, the hospital in Galway did not sound like an optimally safe place to have a child. The problems were not unique to Galway but it was grotesquely understaffed. It did not have the kind of staffing one would expect in a modern obstetric service, one that hilariously boasts of having the best outcomes in the world when it manifestly does not. These problems were pointed out years ago but what is being done about them?

We can do a number of things. We definitely need a better complaints procedure and an appropriate culture but we also need to fix the system. In the Titanic analogy, we need not just a better inspector of lifeboats and not just a better complaints procedure for those who lost someone in the disaster but enough people on the bridge to make sure the ship does not hit the iceberg in the first place. Then one needs to have enough lifeboats in place. Some very hard questions will be asked this afternoon.

I give my sympathies to the witnesses. I cannot imagine what they have gone through and I commend their bravery for coming here today.

Ms Róisín Molloy

Mention was made of human error on the part of the local staff in the hospital. We know that, on the morning of 24 January, no staff actively went into work to cause harm to my child. We do know that human error occurs in all aspects of life.

The HSE has a department to oversee that. It acknowledges that human error occurs and that when it happens one has to investigate to prevent human error happening again.

With respect to what happened within the HSE, we had an investigation into Mark's death. The HSE's standard spin in the event of an incident happening is that the review is to establish why any failures occurred and, second, it is to identify the system's causes of these failures and the actions necessary to remedy these so as to prevent, or if prevention is impossible, to reduce the likelihood of a recurrence of such failures as far as is reasonably practicable. Mark's death in Portloaise hospital was not the first and neither was Joshua's death. This has been going on for decades. I can understand that human error can occur but at what stage does someone make a decision not to act? They had all the information there from the State Claims Agency, the doctors and the nurses. The public were trying to speak about this. I can point to the number of parents the other night who apologised and said, "We are sorry we did not keep going with it but we could not do it", and to the number of parents with children with disabilities who said, "We are sorry we could not force it; we could not fight the HSE because we are too busy caring for our child".

The issue here is that there must be collective responsibility. In terms of the medical staff that morning, there are the processes with respect to the Irish Medicines Board and An Bord Altranais. The HSE as an employer had a duty to discipline the staff who had deviated from their contracts or deviated from safe practice. We have already spoken about a doctor who changed his notes. He admitted he changed his notes. The investigation into Mark's death found that to be true. That doctor was never disciplined. No discipline procedures had started to be put in place in that hospital up until recently, up to about three weeks ago. Up to then nobody had been disciplined nor had a discipline process started.

To be fair, we will put some of those comments to the HSE later to have balance in this respect.

Ms Róisín Molloy

Yes. On the national issue, the HSE is a huge organisation. In terms of ensuring that human error is not repeated and can be prevented happening again, there is an audit structure, a department, risk management, an advocacy department and a complaints department, which are very well-funded and resourced. They have the policies and had they followed their own policies Mark and Mary Kate would not have died. They failed in their duty to do the job that they were paid to do. They were to undertake audits but audits did not happen in Portlaoise hospital in terms of CTG trace readings. They did not investigate the baby's death. When Mark died they went so far as to ask us: "Do you want us to investigate this? Do you want to be interviewed?"

We met the advocacy team. In one particular conversation with the national director of advocacy, and he was extremely difficult to deal with, he said to me: "Now Mrs. Molloy, you have had your say and you are very good at this, now I will have mine." We were up against the system. They had every legal advice. Every time we sent an e-mail, we got a reply stating: "We are seeking legal advice on this." We felt that pressure. The HSE had a responsibility. It had known. It had a complaints department. Every single one of the parents we met and to whom we have spoken in the past number of years has said that they tried to raise concerns, even down to the basics of: "What happened? Why did my child die? Why was he injured? Why was I left with severe injuries?" Each and every time their complaints were not listened to and they were not logged. There was no sense of getting a pattern here to see can we learn from this. The information was there and they chose for whatever reason not to act on it. That is something that we hope the committee will be able to ask the HSE today. The HSE does have a responsibility.

Mr. Mark Molloy

On the question of people being afraid of being sued, which Deputy Mitchell O'Connor mentioned, and to answer Deputy Crown's question, it may be an issue that needs to be taken up by the Committee of Public Accounts rather than this forum. Under section 48 of the Health Act, any matter that is or has been before the courts cannot be investigated by the HSE. People were encouraged to sue. We were encouraged to sue.

By who in terms of personnel or the HSE?

Mr. Mark Molloy

By the HSE personnel.

At local or regional level?

Mr. Mark Molloy

At local level. When we eventually got advice from a solicitor half way through this, the letter came in like lightning. When that happens the HSE stops its investigation immediately. We hear of people having had cerebral palsy settlements after eight, ten or 12 years with no admission of liability. There is no investigation in those cases.

If a family has to sue, that links in to the inquest part of the process. The HSE throws money at the inquests, including senior counsel, so we have to counter that. We had to hire senior counsel for Mark's inquest, and then we were left with a bill. The State picks up the tab for the HSE, which is seeking to limit the scope of the inquest, whereas it is left to the family to pick up the tab for seeking the truth. As a result of that a family has to serve papers, otherwise, they are left with bills amounting to hundreds of thousands of euro. Families have no option but as soon as they serve the papers, the investigation stops. As I said, it may be an issue for the Committee of Public Accounts to look into-----

We have a report coming on that area as well.

Mr. Mark Molloy

-----because taxpayers' money being used to limit the scope of investigations is a major issue.

Mr. Ollie Kelly

With regard to what Róisín said, it is the belief of all the families that no one in the hospital intentionally went in to cause harm to anyone.

Deputy Mitchell O'Connor wanted to know what the people were doing in the hospital to improve matters. Frankly, they were doing nothing to improve the situation. What they should have been doing was learning from previous injuries and deaths that had occurred even prior to the deaths of baby Mark and baby Katelyn, but they failed to learn from anything.

The Deputy asked how that could be enforced. Accountability is the only way it can be enforced. Accountability will drive performance. If someone has to answer for their actions or, more importantly, their inaction, I believe that will help them to be more productive in their work.

Senator Burke raised the issue of under-staffing. A lot of the problem is under-staffing but it is also the quality of the staff. The doctor failed to read the CTG technology, and our little girl was in distress. The killing aspect of that is that the midwife did so, and through the inquest we found out that if they had acted on that, our little girl would be alive today. That is so hard to take in. The issue of the quality of the staff must be addressed when consultants, doctors and midwives are being hired in that area.

In our December meeting we also asked were staff being shadowed, and the training process that would follow. Another issue I have concerns consultants who work in the hospital for about a year and then move on. When they move on, do the issues the hospital had with them move with them? That is a major concern of mine. This consultant failed to read our little girl's CTG, and I am afraid he will move to another hospital. Doctors should not be allowed move on to other hospitals, as part of their learning process, until the hospital is confident that all the boxes have been ticked in terms of them being good enough to move on.

On that, like everyone else we had to go down the legal route to force the holding of an inquest because a doctor wrote on Amy's chart, and it remains on it today, that she left the hospital against medical advice. Under no circumstances would she do that. No mother in the world would walk out on their child and to put that down on paper is not right. Amy had to take the stand at an inquest to prove her innocence. I am sorry-----

Are you okay?

Mr. Ollie Kelly

I am getting a bit emotional. That is the pressure they are putting on the families. What we are trying to do here, and this is a common theme among all the families, is make sure that this does not happen to any other family, not only in the Portlaoise area but in Cork, Galway, Dublin and nationally. The people who were in charge of these health services must be held accountable for what happened, and they need to stand up and acknowledge that. Their inaction is just not good enough.

Are the witnesses happy to continue or do they want to take a break?

Mr. Mark Molloy

I will finish the answer to-----

Are you okay to continue or do you want to take a break?

Mr. Mark Molloy

No, I am fine. In terms of what Róisín was saying, no one was reported to An Bord Altranais or the Medical Council throughout 2012 and 2013 with regard to our cases until the "Prime Time" programme and until Dr. Tony Holohan went into Portlaoise hospital, following which there were reports.

We were obliged to report a nurse to An Bord Altranais and a doctor to the Medical Council, not the HSE. No one was disciplined by the HSE. I will again go back to the note change. There was evidence during the inquest on the changing of a legal document. He had changed Mark's notes and was not disciplined. The statistics were incorrect. The National Perinatal Epidemiology Centre, NPEC, statistics were incorrect. Mark was not reported to it. A lady contacted Róisín yesterday to say her baby had died eight years ago. When she went to get the stillbirth certificate, there was no record of him.

Ms Róisín Molloy

Gerard was his name. She asked me to mention his name. Anne Griffith is the mammy's name and she actually stuck with the HSE's process and hers is one of the cases that have been brought before Peter Boylan with the HSE. For Anne there is a conflict in terms of her notes and her own recollection of what happened. She has yet to be contacted by the team. In addition, she went to Mullingar to get her baby's birth certificate - he lived for one minute - and was told he was not logged anywhere. He does not show up in statistics. It is still happening and the statistics are still not accurate.

Mr. Mark Molloy

To go forward, regarding staff rights taking priority over patient safety, I referred to the HSE advocacy investigation into the way we had been treated. It commenced in November 2012 and, as we sit here, is not complete. Three people identified in it launched a legal challenge to it in August 2013 and our update each month since August 2013 has been that we will be updated in another month. It has been like that since. Has there been a cover-up? Definitely, every single barrier possible has been put in our path to ensure the status quo.

Does Ms O'Connor wish to respond? There are five other speakers.

Ms Sheila O'Connor

I will not say much. On Deputy Mary Mitchell O'Connor's comment that people do not go to work to cause harm, that is patently true. We hear it being said all the time. We understand and know it. Were people to go to work to cause harm, it would put it in a completely different category of responsibility altogether and it is almost unnecessary to say it because otherwise, one would be dealing with something completely different.

Senator Colm Burke asked about staffing. We have neither the competence nor the ability to examine staffing levels in units when people come to Patient Focus with complaints; we simply do not. We deal with individual stories; we listen to people; we believe them and put them in the direction of those who can help them to find out the truth. I must acknowledge that, sometimes or frequently, people are wrong, but even in these circumstances, there normally is dreadful hurt caused by the lack of humanity shown to them when they start to raise issues.

As for the issue of locums on which the Senator picked up, it is a big problem. It was a problem in dealing with the cancer issue and is a problem now. It also is a problem in reviews because people are gone. They have left the country or go missing; consequently, people do not find out. Moreover, in respect of Medical Council inquiries, people are in Australia, South Africa or wherever else and this definitely is a problem in getting them to answer.

I agree completely with Senator John Crown when he states Drogheda was about more than a bad doctor or a doctor who was not up to scratch. Clearly, there were enormous system problems and there was a lack of audits, which completely remains the position in the country. I agree with the Senator that the health service is not as safe as it should be. One major reaction of Ms Molloy who was a patient of Michael Neary, when she heard about HIQA's report, was to ask where the Our Lady of Lourdes Hospital inquiry was in this regard. What about all of the recommendations made in 2007? There were recommendations on audits, clinical directorship and the complaints system, but they are missing. Moreover, in respect of the complaints system, in Patient Focus we have frequently believed the systems are at far too junior a level and that one needs people in a complaints office who are able to confront individuals with body language and skills in closing down questions.

Frequently, that is not what one gets and the personality-----

Does Patient Focus keep an inventory of reports such as the one just referred to, in which recommendations have been made that have not been implemented?

Ms Sheila O'Connor

No, we do not keep an inventory. Patient Focus is patient centred and keeps complete and utterly detailed notes of the story. On how a complaint is followed through, we do not know.

On the report we have to hand, the Minister has said he will implement in full the eight recommendations made.

Ms Sheila O'Connor

Each and every one of them has been made in previous reports.

I understand that. Is no record kept of what has been done or what has been followed up?

Ms Sheila O'Connor

Nobody does it, until something else happens. Some of the issues that arose in the cancer investigations about which Senator John Crown spoke arise in the case of certain staff such as locums, perhaps, and also in circumstances which I probably should not go into here.

With regard to inquests into the cause of death and the decision to hold an inquest, for example, we need to consider these issues very carefully. They have not yet been touched on to any significant extent.

With regard to the comparison in dealing with voluntary hospitals and the HSE, is there a difference?

Ms O'Connor will answer that question. Senator John Crown may ask one quick question.

I would just like to ask-----

Is this a supplementary question?

I did not get a chance to ask the question the first time.

To be fair, the Senator actually had more time than any other spokesperson. I want to be fair to everyone who has been here all morning.

My question is for the relatives, whom I am sorry to put on the spot. When they were interacting with professional staff in the hospital and at the critical moments when they believed the problems occurred that led to their tragic loss, approximately how often were they dealing directly with a consultant in a permanent post?

Ms Róisín Molloy

Yes, it was the consultant who was responsible.

In most of the visits during the pregnancy.

Ms Róisín Molloy

In all of my pregnancy visits it was a consultant. Although I had gone public, I saw consultants. I had gone private for my previous birth and had seen the consultant each time.

I thank Ms Molloy.

Ms Amy Delahunt

I was attending Limerick hospital, but on the day in question when I attended the hospital in Portlaoise, the junior doctor saw me. It was never escalated. He never saw the need to escalate it to a consultant.

I thank Ms Delahunt.

I will call Deputies Catherine Byrne and Regina Doherty and Senator John Gilroy. I will ask Ms O'Connor to answer Senator Colm Burke's question in one minute when she comes back. I will include Deputies Lucinda Creighton and Sean Fleming as part of this group also. The policy is to take committee members first and then non-committee members.

I am well aware of the policy. As the Chairman is well aware, I am not allowed join any committee.

I know, but I must state I am not being unfair to the Deputy, in case she thinks I am.

I know that and I am not complaining.

I acknowledge and appreciate that the Deputy has been here all morning.

I thank the delegates for being here and allowing us to listen to part of their stories about losing their babies. I have read the report. I was not here for the meeting last week, but I have read the transcript and listened to the playback of it. I learned that the delegates had been treated barbarically. "Barbarically" is the only word I can find having read the report on what happened. Many people have referred to the courage of the delegates in being here. It is more than courage; it is about determination. They have a clear agenda. Mr. Mark Molloy has spoken very well about that clear agenda and said he does not want any other family to have to go through the torture, torment and heartbreak his went through. The delegates, in their capacity as individuals and parents, are here to ensure no other parent will have to go down the road they went down.

As a mother and grandmother, I thank the delegates. I have not had similar experiences, but I recall that when my girls went to have their babies, it was a very difficult time all round. One is anxious when one's baby decides to have a baby and goes into hospital to have it. One spends the night walking the floor waiting for news. It is a terrifying time, not only for the young mother but also for the grandparents.

There is one point in the document that jumps out and which I find very chilling and heartbreaking. It makes me feel sick to the pit of my stomach. I used the word "barbarically" because I felt sick in the knowledge that people could be put through such a process and treated in such a bad way.

One of the things that jumped out of the report was that many women feared having future pregnancies. That is a terrible indictment on any hospital to have somebody leave a maternity unit feeling that way. We know that babies die before or during birth, but it is just tragic when healthy people go in to have a precious gift they were waiting for and not come out with it. The fear of not being able to have a further pregnancy caps it all.

I will refer to a short extract from the HIQA report's summary document because it jumped off the page at me:

However, it is apparent that, despite overwhelming evidence to indicate that the local management team at Portlaoise Hospital was struggling to deliver the service, there is no evidence to show that the regional HSE managers took effective control of the situation at that time.

To me, that is exactly what Mr. Ollie Kelly said a few minutes ago. There were many people there who would have been able to control the situation and look after it, but they did not think it was their responsibility, or they did not take on that responsibility.

When I listened to the playback on last week's meeting, I heard the Minister for Health, Deputy Varadkar, speak about incorporating the maternity service at Portlaoise into a clinical network with the Coombe hospital and St. Vincent's University Hospital. I heard him say that this procedure is not in place at the moment, but they hope to have it in place. Do the witnesses believe that in future this will help to alleviate some of the difficulties and prevent inaction at Portlaoise hospital for women going there to give birth? Will it help in any way?

I thank both couples for coming in today. I wish to say how sorry I am personally for the loss of their babies. I am grateful, however, for what Róisín Molloy described as turning into a "mad mammy" and not going quietly. Otherwise we would not be sitting here with her today. The system and process failure would be bad enough if there had not also been a systematic and intentional cover-up over the past four years at every level of organisation in the HSE. I am so ashamed by how they and others have been treated. The only commitment we can give is that we are four-square behind the witnesses to ensure that whatever the committee can do it will do.

Róisín and Mark Molloy have detailed chronologically all of the correspondence. I want to ask them specifically about their meeting with both Philip Crowley and Greg Price who are directors of the patient safety authority directorate and the patient advocacy authority. They are the two most senior people in the HSE for the matters we are talking about. Róisín and Mark Molloy had a meeting with them to discuss their experience. Can they describe that meeting, including how they were treated and how they felt? What were the outcomes of the meeting? Arising from that meeting, what actions were agreed by Mr. Crowley and Mr. Price? Have those actions taken place so far?

I welcome Ollie and Amy, and Róisín and Mark. They have my deepest and profound sympathy. I also welcome Sheila O'Connor and Cathriona Molloy from Patient Focus. It is terribly important that they are here today because while the HIQA report makes for powerful reading, the testimony we have heard gives an insight that nothing else could achieve. I salute them for that.

Ms O'Connor said that Patient Focus has four staff and is funded by the HSE. There seems to be a rather compelling case now that Patient Focus should not be funded by the HSE, but should have some independent funding.

Did Ms O'Connor say it was her understanding that funding towards advocacy in mental health services has been reduced?

Ms Sheila O'Connor

It has gone.

I am a psychiatric staff nurse myself and have worked in the service for 30 years. I noticed that when advocacy was brought in, in parallel with the new Mental Health Act, the culture changed overnight at all staff levels. It was remarkable how the culture changed overnight when there was outside scrutiny.

Mrs. Róisín Molloy alleges that case notes were changed.

I do not want Ms Molloy to comment and I am choosing my words very carefully. It rings very true to me because when I was working in the system there was never a top-down order to secure the case notes where there was an adverse event, it was rather a convention among colleagues. The first thing the nursing staff would do was secure the case notes. We used to lock them in a drug trolley. Is it not incredible? I just wanted to record that without further comment.

There seems to be a complete lack of leadership at every level across the HSE. When we think and talk about the HSE, it is normally about our faceless officials. I am not just talking about them, but about our nurses, doctors and staff at every level. There seems to be a blame game culture within the entire service. I remember at a debriefing one time a senior clinician came to me and said "If you had done this, this would not have happened" while pointing at me. Yet, this was a no-blame debriefing. These are the sorts of issues. Do the witnesses think that mandatory reporting of infant deaths is vital? The Minister was here last week and he reminded us that four different agencies are responsible for the collection of data in this area.

Mr. Molloy set out 33 items of correspondence with the HSE, which translates into many hours of meetings and extensive consideration of information and reading. How did Mr. Molloy feel when the report was published and there were early media suggestions that the HSE was threatening to bring HIQA to court over it? Did Mr. Molloy get a sinking feeling and did it surprise him?

I thank all the witnesses for their clear evidence to the joint committee. I am caught somewhere between being utterly depressed and very inspired by the commitment, tenacity and sheer doggedness of the witnesses in pursuing this on behalf of their babies. I have two questions. Mark and Róisín spoke about the report that was conducted about baby Mark. Other reports were conducted internally about which the parents were not even informed which I find deeply shocking. Has the HSE committed to conducting similar reports to the one that was conducted about baby Mark at the insistence of Mark and Róisín? Do the witnesses expect that other reports into those individual cases will be conducted which will involve participation by the parents, which is self-evidently a step that needs to be taken?

Specifically, I ask about remarks Ms Amy Delahunt made. It is up to the witnesses as to whether they wish to respond. Ms Delahunt said the director general of the HSE must stop misinforming the public that these events were before his time at the HSE. It is a very serious statement. I would like the witnesses to elaborate on some instances of that misinformation being given. This is very serious in terms of the persistent and consistent approach of the HSE at the very highest level. We are aware that the HIQA report has identified systemic and other failures at national, regional and local level. Unfortunately, the HIQA report does not suggest who is responsible and who should be held accountable. I would like to hear from the witnesses who they think is accountable or how they consider that accountability should be achieved.

At the end of the process, what will give the witnesses, not personal satisfaction but reassurance that others will not have to endure the trauma and tragedy their families have suffered over recent years?

While I am not a member of the joint committee, I wanted, of course, to be here today and I thank the Chairman for allowing me to speak briefly.

I thank Róisín and Amy, Mark and Ollie for attending. It is sad they have to be here. We are all here to make sure, as far as we can, that this does not happen again. I know people will never forget Mark and Mary Kate.

Following on from Deputy Creighton’s comments, what, if anything is possible, would it take to bring closure? What would allow Mark and Róisín to say, “We have done our best by Mark and it was not in vain”?

The HIQA report states it cannot confirm services in Portlaoise hospital are safe while the HSE says they are safe. The most qualified people to speak about any hospital are the people who use it. Do the parents opposite believe Portlaoise is safe today?

I have to say to Róisín that it goes without saying that she is not a crazy woman. She is the most reasonable and restrained woman after what she has been through. I imagine others have been through this but did not have the ability or the wherewithal within themselves to do what she did. If she had not had that determination, ability or wherewithal in every manner and respect to pursue this, we still might not know what was going on in the hospital. We thank her for bringing that to our attention.

I know Mark raised some other issues about the whole way they want to shove this into the legal process. That is part of the public service; they send out solicitors’ letters to close matters down. That is standard in the public service and a culture which we need to change.

Mary Kate passed away in May 2013. Mr. Kelly and Ms Delahunt were pursuing their individual case up until the “Prime Time" investigation unit's programme. Were they in contact with other families prior to that? Did they come up against stonewalling too before the broadcasting of the programme?

Mr. Mark Molloy

On Deputy Regina Doherty’s question about the meeting in October 2013, it was quite a short meeting. At that stage, it had been 20 months since we had copied the original letter to the director of national quality and patient safety. We had a meeting with him the previous December after meeting his own national incident management team four weeks beforehand.

When we got to this stage, it was 20 months after Mark’s death. We had the 43 recommendations and we went to hear how they were going to be implemented. When we were told they were here to listen, we said politely that it was the end of the meeting.

We were given assurances the recommendations would be implemented. It was not until Tony Holohan went in after the “Prime Time” programme that some of the recommendations started to be implemented. We were given that assurance. We were also given an assurance by the director of advocacy that the investigation into non-clinical matters would be progressed and finished in a shorter timeframe. As I said earlier, it still is not complete today. It was quite a short meeting. We had had enough at that stage of lip service.

Earlier, Ms Molloy said that Philip Crowley said to her that she was very good at talking but that he was going to have his say. What was his say?

I would prefer if members did not name people.

We all know it is the elephant in the room.

Ms Róisín Molloy

The context was that we were trying to get the investigation completed and also trying to get baby Mark’s report. As we had limited input into the final report, we needed to see the draft report to see its contents. We were told we would have to go for a judicial review to get access to a draft report, even though all the staff members would have had access to it prior to its publication.

Praveen Halappanavar then actually got the draft report into his wife, Savita’s, death. We told them they had set a precedent so we wanted the draft report.

That was the context. These are emails, but we are talking about thousands of hours. Every one of the emails was followed up by 20 telephone calls.

By Ms Molloy.

Ms Róisín Molloy

Yes. I never went on the telephone and we never went to a meeting without statistics and having researched every policy and the backgrounds and roles of the people we were meeting. It was very much about feeling completely isolated and that we were up against the system and wondering where we would go if the head of advocacy could not support me. At the end of the conversation I asked him what was his title. He told me that it was head of advocacy and I asked him what it meant. He explained what advocacy was and I said I had never felt so alienated and put down by somebody in that position. It epitomised the wall and the complete disdain with which they had treated us. We were treated with disdain. They hated us.

Mr. Mark Molloy

On Senator John Gilroy's comment about the presentation, it is a fraction. It was worked on from 4 p.m. on Friday when I got home from work until last night in an effort to condense it. Without time constraints, we could be here until tomorrow. We have a huge volume of information. It does not go into the inquest into Mark's death or him being classified incorrectly as stillborn. There are many other elements, but we had to try to condense the presentation today. We wanted to focus on what we had been hearing on the news for the past two weeks, namely, that "this was not escalated to national level" and that "this was not on my watch". This proves that both assertions are incorrect.

Mr. Ollie Kelly

Deputy Billy Kelleher asked me what we knew about the "Prime Time" investigation unit's programme. Mary Kate was born in May and we found out in September through a meeting in Limerick that the consultant in Limerick had made inquiries about the care Amy had received in the Midland Regional Hospital in Portlaoise. The consultant there confirmed that she had looked at the CTG scan and said that if she had seen it, she would have delivered Mary Kate straight away and that there were issues within the CTG. At that stage, we decided that we had to meet the doctors at the Midland Regional Hospital to find out what had gone wrong and why and, like all of the families, to make sure it did not happen again. We got on the telephone to make an appointment and eventually were given an appointment in December. We had to go to the hospital, which was very tough. We wanted to have it done before Christmas and if we wanted to have a meeting, we would have to go to the hospital where it had all gone wrong. We wanted to have it outside the hospital, but if we did not attend the December meeting, we would have had to wait until after Christmas. We were very anxious to have it before Christmas to get it out of the way in order that we could have some sort of normal Christmas. It should have been Mary Kate's first Christmas.

At the meeting we were told that they were very sorry. We were told by the consultant that if she had seen Amy's CTG scan or had been called, she would have delivered her straight away. It had been her day shift and she was probably only around the corner.

It is okay; take your time.

Mr. Ollie Kelly

We were also told at the meeting that they had never seen anything like this before and never wanted to see anything like it again. We were told that the nurse and doctor were very sympathetic and very sorry and that if we wanted to, we could meet them to hear their apologies.

A question was asked about reviews. We asked whether a systems analysis, related to severe accidents and deaths, had been carried out and were told that it had. We were also told that it had been completed and that we would have to apply to get it under the freedom of information regime.

On the way home in the car we pulled in to get a bite to eat. We discussed what we would do next. I forgot to mention that we said the doctor had failed to read the CTG scan properly and asked what could and would be done. We were told that they were not in a position to do this, that it was for another forum.

The language suggested that we would have to take a legal route to deal with the misreading. We were looking for disciplinary action and for the doctor to be shadowed and to learn from it. On our way home, we decided we would leave it at that. We accepted that the hospital had learnt from it. We had been told it had never happened before and that they never wanted it to happen again. At that stage, we believed that Mary Kate had died for a reason, that her death would make the maternity services in Portlaoise safer. We fully believed that. It is how we grieved as parents, by thinking that her death had been for the greater good.

Christmas came. We had never told our parents and families about what had happened and the fact that Portlaoise hospital had been to blame. We did not want to put that pressure on them. We wanted to get through Christmas and get back to some sort of a normal life and grieve for our little girl. Then, we saw the advertisements for "Prime Time", and we sat and watched Mark and Róisín Molloy, Shauna Keyes and Natasha Molyneaux talk about what has happened to them. We realised then that we were not the only ones, that Mary Kate, and many other babies, had died in vain and nobody had done anything about it. We were gut-wrenched. The following morning, I got up at 6 a.m. and watched it again on Sky+. We cried through it and we were disgusted at how we had been led to believe that we were the only ones and that it was "just one of those things". At Wednesday's meeting, it was a common theme that all the families had felt it had never happened before and that they were the only ones.

As time went on, we contacted the HSE and said we wanted to see Amy's report and find out the ins and outs of it. Only at that stage, when we requested it, was it posted down to me. In fairness to the man in the HSE who spoke to me, he told me it made for harrowing reading, that he was not happy with it and that he would have a proper system analysis review done. Given that it was a registered letter, I had to go and collect it. Although we had been told it was a system analysis report, it was a desktop report. According to the report, Amy had discharged herself against medical advice. When Amy got home from work, I had to sit down and tell her that according to her file notes she had discharged herself. It was a horrible thing for us, and it remains on her file in Portlaoise hospital. We had to go as far as an inquest to verbally right that wrong and have the doctor add to his deposition an apology for making us believe Amy had discharged herself against medical advice.

We went through the inquest procedure. As Amy said, she had to take the stand to prove her innocence, to prove that she had not walked out on her child. Members asked about the evidence that Mark and Róisín Molloy had gathered together. At that stage, they had given us that information and we knew, and everybody knew, that Mary Kate died due to a lack of interpretation of a CTG reading, and we wanted to bring it to a forum. This is the common theme among all the deaths, and everybody knew about it. The CTG interpretation failure happened because the hospital had failed to roll out or implement anything to improve the standard of care. Mary Kate died because the standard of care was poor in the hospital at that time.

It could have been, and should have been, improved. There have been recommendations. Deputy Doherty spoke about them and where they came from. Umpteen recommendations have been made going back years and none of them has been implemented because there is no one there to implement them or to follow up on them to make sure they are done. The HSE is great to say: "We accept these recommendations; we will put something in place." That is all fine for this week and next week but when the pressure comes off - we have a referendum coming up - it takes the foot off the gas. It fails to finish them out. It has finished out nothing. The CMR report has not been finished out.

Getting back to how we felt about all we were told at the December meeting, we asked if it ever happened again and if they had anything to tell us. We found out after meeting Mark and Róisín Molloy that the doctor was at their inquest the week before. That was the time to tell us that they had problems, it was the time for open and honest disclosure, the time to say, "We have errors here, we have made mistakes", and that is the time to implement the recommendations that have been made. I will not go on about it because it is still ongoing. It needs to stops now, it just needs to stop. Enough hurt and enough pain has been caused. There were more than 80 families in Portlaoise last weekend and those were the people who came forward. Members need to put the pressure on to get these recommendations implemented.

Ms Amy Delahunt

With regard to the meeting in Portlaoise last week with all the families, the microphone was passed around for more than five hours and everyone told their story. As has been said, everyone was told: "You were the only one." It was the same doctors' names and midwives' names that were being mentioned again and again. A couple stood up at the other side of the room and they talked about the death of their little baby boy in 2007. They had an inquest into their little baby's death in 2008 and they came out and they had eight recommendations in their report. I was thinking when we had Mary Kate's inquest in December that we came out thinking we had done a good thing, that we had done a service going to the public forum of having an inquest. We had the recommendations and that was her little purpose but to find out there was a family doing the exact same thing in 2008, 2009 and up all along, it just feels at times as if the HSE has one long to-do list and says, "We will do that and we will do that", but nothing ever gets done.

A few of the families mentioned doctors and medical staff having a God-like complex as if they were untouchable. If there is no accountability, it makes the parents and the families feel like the deaths of their babies and their injuries did not matter, that Mary Kate's life did not matter and baby Mark's life did not matter and all the other babies. They did matter and these staff should be held accountable. Until they are held accountable, there will be absolutely no improvement in service.

Ms Sheila O'Connor

It is very hard to follow that. I will let Ms Cathriona Molloy do so.

Ms Cathriona Molloy

Senator Gilroy mentioned the funding issue. We are in the situation we are because we are funded by the HSE and the background was our money came from the old North Eastern Health Board because the people on the health board at the time felt it was important to support advocacy and what we were doing and to try to put it on a proper footing. It started off there and the funding has moved all around the HSE. We are where we are. We never tell anybody that we are not funded by the HSE. Ms O'Connor has a great expression. She says the polluter pays. There has to be support for the damaged people within the system. We are honoured to be funded and to be in the job that we do, and to be able to listen to the stories of Mr. Kelly and Ms Delahunt, Mr. and Mrs. Molloy, Shauna, Katelyn and all the different stories. We are horrified and we feel so sickened in our stomachs from what we are listening to.

We have been listening to this for years. We are collecting information and trying to feed it back, but the system is not set up in a way that protects the safety of all individuals. That does not happen. Waiting for reviews takes too long. One must get independent and indemnified doctors. Any external person in a HSE review must have insurance. If one kicks up a big enough fuss and it gets into the media, people from outside the country become involved. I was on the Savita Halappanavar review. I was upset, not because I was on the review, but because I was supporting Róisín and Mark Molloy at the time and they were fighting a battle. Now we have media interest.

The situation in Portiuncula is the same. Someone from outside the country has been brought in to do the review. We are still awaiting the reports for those families that have been affected by what happened at Portlaoise. Seven obstetricians have been on the panel and there are 28 reports. If one works it out, that is four each. Go back to the Neary days. I know that is hard, but he cannot be left out. Ms O'Connor and I told the North Eastern Health Board that people needed independent reports into what happened to them. With the board's assistance, we brought two doctors from England. They saw 64 patients between them in four days. They produced their reports in less than one month and then an overall report of the care and treatment provided to those women. That was done and dusted. Why are we waiting so long to give people answers? Last Friday, I met a young couple who had had a bad experience in the maternity services. The woman contracted sepsis and became very ill. We sat down and had to try to convince an obstetrician that a review needed to be done.

I could list off countless places where we must give assistance. This is the energy that Patient Focus invests in trying to support patients, telling their stories and getting reviews, but there are obstacles in the way. This is important. Róisín and Mark Molloy are unique in what they have done. It is a credit to them, but I have always told them that it is sad that they must lose so much of their personal lives with their boys and their extended family. I did it and know what it is like to lose all of that. I understand their passion in believing that they must do it. The system should not be set up in such a way that this must happen. There is under-reporting to coroners and under-reporting of serious incidents. People on the ground have a duty. Deputy Mitchell O'Connor stated that people did not go to work to do harm. We know that, in the main, they do not. Neary was a different story. However, we must remember how many people worked with him. They moved on. Some are consultants. There is a particular doctor who is a consultant in a hospital.

Please, do not name names.

Ms Cathriona Molloy

Midwives have been affected. Many people are affected by it. It is not about going to work to do harm, but about the harm that occurs and how people can be affected by it institutionally. This is what is important. If there are unsafe practices and deviations from care, they need to be learned about. One must retrain. This is a constant job. Every hospital has a duty. The HSE has its remit, but one cannot take from the institutions and managers their individual responsibility for doing their jobs. Leadership comes from the people on the top right down to the bottom. Good people do good things, but if bad things are done, people get used to them.

I thank Ms Molloy.

Mr. Mark Molloy

I will answer Deputy Creighton's question on the HSE director general. The schedule that I set out mentions how, on 26 October 2012, correspondence that we had sent to the Secretary General of the Department of Health was referred to the director general. We have the correspondence between the two on file and how one told the other that he believed the other needed to deal with the situation.

Which one is that?

Mr. Mark Molloy

The 26 October 2012 one. After we wrote to the Secretary General, he sent correspondence to the director general stating that this matter was for the latter to handle. Members will also see how, on 25 November 2012, we sent further correspondence to the director general.

According to information we received under FOI, notice was issued of a meeting between the director general and head of quality and patient safety, QPS, of the HSE, the agenda item of which was baby Mark's investigation. In regard to who should be accountable, I believe that the Minister and not the head of the HSE needs to order an investigation and that whoever is found to be incapable, incompetent or unwilling to carry out their functions, resulting in catastrophic outcomes for patients, should be moved aside or removed from their position.

Ms Róisín Molloy

In regard to Deputy Fleming's point about what will bring about closure for us, I do not believe that will ever happen. As in the case of raising children, whom as the saying goes never leave, for us the same applies in this regard. There must be a legal obligation of open disclosure, both for the organisation and the individual. The focus of current policy is on individual doctors and nurses. We believe the organisation as a whole needs to embrace that and to end the culture of blame in terms of who is at fault. There is also need for an audit of where we are at in terms of maternity services in Ireland, to include mandatory reporting of deaths of and injuries to babies.

On the issue of patient advocacy, the voice of patients is a good indicator of how well services are operating. Patients must be listened to and viewed as equal partners. We believe that patients need to be the masters of their own medicine and that when something goes wrong they can speak up and have what they say acknowledged.

By way of information, the committee recently completed hearings on the cost of medical indemnity, one of the recommendations of which deals with open disclosure.

On the point made by Mr. Kelly regarding the lack of sharing of information between hospitals in regard, in particular, to agency and locum staff who make a mistake in one hospital and then move on to another hospital with whom that information is not shared, it is an important that point is highlighted within the HSE.

Mr. Mark Molloy

On the point made by Senator Burke, we made that point to the chief medical officer a couple of weeks ago. As there are particular colleges in England from which the NHS will not recruit but Irish agencies do, we also recommended that such information be shared on a European-wide basis.

We should not have any requirement or need for locums. We should have a sufficiently well-staffed service to enable cover when a staff member becomes ill or is otherwise incapacitated. It is wrong that we have locums in the first place. It is a Band-aid over the problem of under-staffing.

On behalf of the committee and non-members of the committee I thank Ollie, Amy, Róisín, Mark, Sheila and Cathriona for their presentations. Despite the tragic reasons we are here, it has been a privilege to meet them. I thank them for their presence, advocacy and courage.

We should acknowledge what the witnesses have done and applaud them.

Sitting suspended at 2.20 p.m. and resumed at 3 p.m.
The committee met in private session at 3 p.m. and resumed in public session at 3.15 p.m.