Not long after Mark Molloy was appointed to the board of the HSE last year, his wife Roisin met a very "senior figure" in the health service. "How is Mark getting on on the board?" he asked. She replied: "It's really difficult."
"But he's enjoying it?" She looked at him in disbelief.
The Molloys had been an ordinary family raising four boys in Laois with a fifth on the way. But baby Mark died at the Midland Regional Hospital in Portlaoise on January 24, 2012 and the trajectory of their lives changed forever. They were told their baby was stillborn and had to fight to find out he was alive for 22 minutes. They fought for an inquest that found he died of medical misadventure. They fought for accountability that, so far, has resulted in a professional misconduct finding against one doctor who altered his medical notes. Their case contributed to the major review into baby deaths at the hospital.
When pursuing answers over baby Mark's death, Roisin said, Post-its covered the walls, and the kitchen table was piled with files. When the children complained "we're sick of the HSE", she used to tell them: "When we're going to school and we pass a gate open in a field, we don't own the field and we don't own the animals, but we have to get of the car and close the gate."
They never wanted to be patient activists but felt a burden of responsibility to share what they found out on their journey to establish the truth about their baby.
Last year, Mark Molloy was invited by Health Minister Simon Harris to become one of two patient representatives on the HSE board. Mark confirmed last weekend that he had resigned from that board after less than a year. At home in Laois last week, Mark and Roisin explained why in their first detailed interview about their decision.
The couple considered the appointment carefully. "There were many discussions around the kitchen table. We felt that for over seven years we had been working from the outside, and we achieved a lot," said Mark.
"We had been through the process of it not going right for us, and having doors closed in our faces, and we were determined to take a position on the board to ensure that reactions to adverse events were improved for patients."
Mark, a quantity surveyor, is an experienced director of a construction firm and, although this was his first time serving on a state board, he was fully aware of his corporate responsibilities. He served on two HSE board sub- committees - the people and culture committee and the quality and safety committee.
Early on, he said, he had concerns about the level of scrutiny applied to the "big ticket" items coming before the directors and he felt his concerns were not always reflected in the minutes of board meetings, which are published on the HSE's website.
"I was concerned that the questions that I did ask, pretty serious questions on aspects of the running of the HSE, were not fully reflected in the minutes of those meetings," he said.
If anything, the full unabridged minutes would show that the HSE board was fulfilling its function by "asking the difficult questions", he said.
"I was a dissenting voice at the meetings, there is no doubt about it. I always approached every topic from our own experience."
He felt that patient safety did not feature highly enough on the agenda.
From "day one", he said, he felt a "lack of scrutiny", adding: "I felt everything was rushed through, too fast, for the mammoth [issues] that you were dealing with and the level of detail that you should have to get through. And I felt that the level of scrutiny you would imagine would be needed wasn't there. So that was a concern."
He was concerned also at how the HSE's efforts to cut the acute hospitals budget overrun from €200m to €100m would impact on front-line services.
"To stay within that €100m acute overspend, what were the patient safety concerns?" he had asked. "I was given assurances that these decisions were made with safety in mind."
The Molloys know lots of front-line healthcare staff, including in their own community. What Mark was hearing at board meetings did not always chime with "what people were saying to us on the side of a football pitch on a Saturday morning".
He gave another example - the HSE's patient safety strategy for the next five years, launched late last year. "It is a rehash of what was there when Mark died, with the same people responsible for its implementation," he said. "I would go a bit further to say these policies have to be funded as well. When Paul Reid wants to bring in accountability, if he hasn't funded those policies, how can you hold anyone to account? If you don't give people the tools to do a job, how can you expect to hold them to account for not doing that job?"
Mark said he raised these funding concerns at board meetings but was not reassured that it was fully funded. The plan was still approved last year by the board.
"It has to be recognised, that this is a new board, it's a new CEO and everyone is finding their feet," he said. And there is a lot to get through, with different sectors of the health service crying out to be heard, as he puts it.
However the "last straw" came in November when the HSE's national service plan - which outlines spending commitments for the year ahead - came before the board for approval.
The plan awarded a fraction of the promised funding to the national maternity strategy, which emerged from Savita Halappanavar's death in a Galway hospital, and which the Molloys and other families had pushed for.
The strategy was launched in 2016 by Leo Varadkar when he was health minister, with a promise that €8m would be ring-fenced to fund it. Many of its 77 recommendations have yet to be implemented. The Molloys discovered last April that the ring-fencing of funding had been removed. Before last November's HSE board meeting, they learnt that decision had been taken in the Department of Health.
"I was the only one at the table who was going, 'we are talking about a maternity strategy which was getting €1m but that was supposed to get €8m'," said Mark.
"If you wanted to pin my resignation on one thing, it is the lack of trust that comes from that. We felt the cutting of funding was symbolic of the greater patient safety ethos we would have had to accept if I stayed on the board.
"When you consider the number of cerebral palsy injuries, maternal deaths and baby deaths that were accounting for more than €200m of State Claims Agency money. And for some reason - and I don't know the reason - the funding for the national maternity strategy was decimated, it makes no sense," added Mark, who sat on the expert group on tort reform and management of clinical negligence claims.
"We have a strategy in place that we know can prevent possibly four or five cerebral palsy cases a year and we have decided not to fund it. I can't reconcile it. And I don't want to be around it, I don't want to be signing off on it, I don't want to be accountable for it.
"Integrity goes out the window. The trust is broken."
Mark and Roisin discussed his future on the board up and down before reaching their decision that he would resign over Christmas. "If you are going to be on the board, it has to have meaning, otherwise the sacrifice is for nothing," said Roisin.
The couple plan to continue their advocacy, and Roisin remains on the advisory council for Slaintecare.
Sitting in their kitchen in Castlebrack, Mark recalled the "very senior" health person who inquired if he was "enjoying himself" on the board "Enjoying it?" he said. "We were up until two or three in the morning reading 200 or 300 pages of notes that really mattered to people's health - older people, people on trolleys, children.
"This was heart-breaking stuff and the burden of the responsibility was phenomenal. Not enough money in budgets, policies we thought could have been done better. It was a huge responsibility and it was anything but enjoyable. But we were doing it for the greater good."