In 2013, the then minister for health, James Reilly, along with the minister for justice, Alan Shatter, developed the national open disclosure policy, which was followed by the Patient Safety Bill, launched by the current Minister for Health, Leo Varadkar, in November 2015.
If you have been the unfortunate victim of medical negligence in the past, you will be all too familiar with the adversity of the HSE and several of its employees.
In 2009, at the age of 18, I lost my first-born child, Joshua, during childbirth in the Midland Regional Hospital in Portlaoise. His death was not a consequence of understaffing but human error. More than 100 families were affected by the maternity service in that same hospital over the space of 20 years. Many, thankfully, escaped unscathed. Others were left with anything from a minor injury to a serious birth injury, even death. It was a game of life and death and there were far too many losers.
Let's take the example of a high-profile case involving a 14-year-old girl, Roisin Conroy, who should undeniably be worrying about her love life, undertaking her Junior Certificate exams in the coming year and looking forward to spending the weekends with her friends. She instead has cerebral palsy and can communicate only with her eyes. Following the High Court case against the HSE, her parents, Kevin and Mary, described their anguish at the failure of the HSE to give a full and accurate account of the circumstances surrounding their daughter's birth.
Because of the HSE’s lack of truthfulness in the immediate and ongoing aftermath, she missed the opportunity to avail of badly needed services which could well have allowed her to walk, to have some independence. Instead, this family was met with silence. The proverbial “brick wall” we have all become familiar with.
Responsibility
This theme is not exclusive to Portlaoise. It is common in other hospitals. The same techniques were used for years countrywide. Many women fear the prospect of ever becoming pregnant again. Parents were wrongly made to feel as though the outcome of their child’s life or death was their own responsibility.
HSE policy has required for some time, in the event of an adverse incident, that an “incident report form” be completed. This is a short, simple, six-page document mostly comprised of boxes to tick. Ordinary mishaps for Portlaoise hospital such as: death, birth injuries of all types, stillbirth, forgotten instruments . . . Once the form is filled in, it goes to management where it is decided whether the incident warrants further investigation. Until recently, many cases did not escalate beyond that stage.
What happened to our son was one of those “incidents”. A cold word to candidly describe a cold, dead, heartless system. Joshua’s death did not warrant any further investigation until two years later, when evidence of substandard care in two other cases was uncovered. The HSE report into these cases was not shared with families whose care was criticised. Families were not consulted in the process, which contradicted HSE policies. Nobody cared as long as no questions were asked.
The big breakthrough was when families became aware of each other in 2013. By chance, Róisín Molloy, mother of baby Mark Molloy, came to hear me on a local radio station. Along with friends, I was raising money to provide the maternity ward in Portlaoise with a cold cot, a mobile cooling device that allows babies to stay with their parents following a perinatal death.
Róisín contacted me within days of the interview and we met, along with another mother from the same area, Natasha Molyneaux, mother of baby Nathan Molyneaux.
Inquest
We spoke in depth about our babies’ deaths and quickly realised the details were spookily similar. In September of that year, after the enlistment of a solicitor, Joshua’s inquest took place. A mere three years and 11 months after his death. I and Joshua’s dad, Joey, had begged and begged for this day to come.
We just wanted to know the cause of death and the permission to receive a death certificate. The coroner returned a narrative verdict in Joshua’s case, but his was the first in a long series of inquests to come from that hospital relating to baby deaths.
During the course of Joshua's inquest, a reporter from RTÉ introduced herself. She explained that she had heard stories and that her RTÉ team were certain that there were a lot more than three baby deaths in Portlaoise hospital.
‘Prime Time’
One month later, Róisín Molloy told me by phone that she and her husband, Mark, planned to contact
Prime Time
. I agreed, as this seemed to be the only thing to do because nobody was listening to us. We were hurt, frustrated and exhausted. After the programme, we didn’t need to contact the HSE or the
Department of Health
. They came to us. Unwittingly, our babies became the impetus for change.
The floodgates opened on Portlaoise hospital, the HSE and the Department of Health, as blame was apportioned equally. It has taken a further two years for a full systems analysis review to be completed in relation to Joshua’s care. The report was written by two women within the HSE who I’ve grown to respect, deeply. They are different to those I’d encountered previously. Finally, somebody within the HSE listened. These two ladies dug to the core to find the answers that had been withheld from us.
Problems in finding independent experts, yet again, held up the process for a further six months.
At least 50 families are still waiting for the truth regarding their care.
The HSE has tried to expedite or possibly remove the necessity for families to endure the review process by allocating a team of experts from within its own doors to give them the answers that they so desperately seek. I’m not convinced this is the solution. Most families do not have faith in the system that not only failed but deliberately misled them. In fact, their own versions of events aren’t being accounted for. Can we truly begin to restore trust in the system as it is today or do we merely sit idly by and anticipate the next “big scandal”?
What can the professionals do to put an end to these disgraces and rectify some of the damage?
They should tell the truth as soon as they are aware of what they have done. We were taught this as children, right around the time that we were taught to finish our food or it would upset the starving children around the world. This truthfulness will lead to fewer lawsuits. This has been proven in the University of Michigan hospital where, following the introduction of candour, the hospital found that law suits reduced by 40 per cent.
Damaged people do not want money. They want the truth; to leave and to recover in peace.
Aftermath
Patient Focus has been at the core of healing these maternity scandals and the review processes. Four brave women received more than 200 phone calls in the aftermath of the
Prime Time
programme. Half of which pertained to Portlaoise hospital alone. It is only now that I have decided to voluntarily work for Patient Focus that I appreciate the work and dedication that one small, grossly underfunded organisation has undertaken in two years. It has supported many families through some of the most difficult times of their lives.
If we want to rectify the damage done in our maternity hospitals, we must demand in-depth, independent reviews of individual cases, bring them before a judge and once and for all, show the powerhouses of this country that we neither fear nor trust in them.
I have seen at first hand the changes that have been made in Portlaoise. There are 70 midwives, where there were 39. There is a specialised bereavement team whose responsibility it is to comfort both families and staff following the death of a baby. The hospital is beginning to practise open disclosure. Vast amounts of mandatory training in various monitoring technologies have been made available. I gave birth to my daughter, Maisie-Ann, in the same hospital in December 2014. But it has become a different place. Staff seem calm. Patients are well cared for. Basically, service users are being afforded the respect and dignity that they should have always received.
I am really quite hopeful for the future of the HSE and indeed, the maternity services. A new national maternity strategy is before the Cabinet. The law must change to burden clinicians with a legal obligation to inform patients of errors. In time, this will restore trust.