'Men cried. Women told of damaged babies ... abandoned by the services'
Sheila O'Connor of Patient Focus gives insider account of last week's emotional six-hour meeting between families and the minister
Last year was undoubtedly the most difficult for Patient Focus. We spent 2014 speaking to the broken-hearted families of babies who died or were injured in Irish maternity units. Last week, after the publication of the Hiqa report into Portlaoise, the Minister for Health, Leo Varadkar, wanted to meet them. He wanted to hear what they had to say.
The day of the meeting started badly. News broke of another baby that had died, in Cavan. Another investigation was under way. "Another broken-hearted family," one of the women on our group said. "We don't know the story there yet," I said. "We'll have to wait and see."
The woman was upset. How can she go to this meeting? How can she not go? Would she break down again, meeting a room full of others with hearts broken like hers? I told her, people at the meeting will be quietly spoken, considerate, nervous, shy at first. It is the Minister's meeting. It is his responsibility to ensure everyone he invites is safe.
"Yes, safe it the right word," she said. "Safe," she repeated again. I heard the silence of the families as they arrived. I watched them as they read the notice on the door saying "Private Meeting". I saw them seek out a seat around one of the small tables. Could all these seats be filled? Surely not. I watched them look round the room, perhaps in disbelief, perhaps scanning for a familiar face.
A queue formed to get in. Silently, one by one, they entered. In the end there was standing room only when the minister and his colleagues arrived. About 80 families, 160 broken hearts, came to listen and to speak. There was no agenda. Everyone who wished could speak. One by one, people told their stories of inhuman treatment in the midst of profound grief. Casual cruelty dished out by doctors and midwives as routine as tea breaks. Men cried. Women told of dignity denied during rough medical examinations, of damaged babies all but abandoned by the services, of their disbelief at the numbers attending this meeting. All alone, some spent 20 years believing they were the only one. Everyone listened respectfully, extended fellow feeling to those speaking and allowed them time, the time not given by the professionals in their hospital.
The minister sat quietly listening, almost receding into the background as he left the floor open to the assembled families having their say at last. "Old hands", still in their twenties, who had told their stories in public many times before, left the room to speak to the media waiting outside. Even they were shocked at what was unfolding inside. At the sheer scale of it.
In Patient Focus we put faces to names and broken hearts on Wednesday night. We know people were circumspect in what they said. They under told the story, perhaps to preserve their dignity in the telling, perhaps to protect those listening. Perhaps also to contain the communal grief in the room. The meeting that lasted for six hours was "safe". Heartfelt condolences were extended to the family of the baby who passed away two days earlier in Cavan. Then people left as quietly as they entered. We left at about 11pm, more than six hours after we arrived. The media that gathered outside were long gone.
The next day people told us of the exhaustion they felt. How glad they were to speak to the minister. How he believed them and maybe now something would be done. They believe he has learned a lot about what really happens in our maternity units. Not everyone, of course, was hopeful things will change. Let's hope they're not right. This time.
Sheila O'Connor is a founding member of Patient Focus, a national patient advocacy group.