We are lucky Meadhbh is still with us . . . we can only hope that she will get her transplant soon
A worrying absence of planning cost my daughter her vital liver operation, writes Joe McGivern
THE night of July 2, 2011, will be etched in the memory of our family forever, a night that could have given our child a new lease of life. When we received that call -- a call we had been waiting 11 months for -- from the transplant co-ordinator at 7.20pm, we were elated.
Meadhbh and her sister hugged so tightly before we left for Sligo airport, without uttering a word, but we could read their body language: "Good luck, dear sister -- I hope we will see each other again." They are close.
We are all so aware now of the events that unfolded that night, every parent and every donor recipient's nightmare -- 'we have a suitable organ but we cannot get you there to receive it in time'.
Behind our decision to go public on the events of that night was the fact that not only could this have happened to any child in Meadhbh's situation, but that such a mix-up could have resulted in a death.
We are lucky in the fact that Meadhbh is still with us and we cling to the hope that she will get her transplant soon.
She holds the unfortunate title of being the longest ever on a paediatric liver transplant waiting list in Ireland.
In the days that followed, we were contacted by an investigation team from HIQA and were interviewed in relation to the events of that unforgettable night. We gave our account of events and our wishes for consideration in the course of the inquiry.
We also outlined a number of issues to the inquiry team that we wished to be addressed, all of which are outlined in their report.
The report, which was the result of weeks of interviews and collating of information, clearly outlines the sequence of events on the night and arrangements for transportation of transplant patients. Its findings have confirmed what we had thought -- there was never a plan in place.
The findings are frightening. We are glad that we brought this to the fore. Had we stayed quiet on this, nobody would ever have known of the lack of plans and protocols.
The findings, the 78 pages of which I only received yesterday -- are so extensive that I will only touch on the ones that struck me most.
The central thread of the report, from my reading of it, is that there was no evidence of governance or accountability in relation to transport arrangements for transplant patients -- at any stage.
The highly bureaucratic nature of the HSE is outlined in several pages of the report and stifled genuine attempts to put in place arrangements of this nature: "It was difficult and highly bureaucratic to obtain financial approval for a private aircraft in an emergency situation when time is crucial to a patient's survival or eligibility for availability of a transplant organ." This is the stuff of nightmares.
A service-level agreement was made with the Air Corps in 2007 for the provision of air ambulance services. There was never a formal agreement with the Irish Coast Guard.
Yet, this was the option chosen for our child -- the slowest mode of transport available from the west coast of Ireland to the south-east coast of England, with two stops en route, totalling four hours.
The offer of two jets was turned down because "the protocol stated that if a state asset was available in the timeframe required then it must be utilised".
But this was based on an assumption that the helicopter travel time from Sligo to London was one-and-a-half hours. How wrong can you be?
Evidently, none of the agencies involved with making the transport arrangements had any aircraft logistical experience. This was not their fault. Again, bureaucratic protocols opted for the cheapest form of transport available.
The HIQA report has raised a particular concern in relation to this.
On the topic of transport, it makes reference to a number of hospitals involved in transplantation of organs. All have defined plans for each transplant recipient. Of particular note are the Mater Misercordiae Hospital in Dublin and the transplant system in Northern Ireland.
Both effect transfer by fixed-wing aircraft, obviously the quickest, safest and most comfortable mode of transport for a person about to undergo up to eight hours of major transplant surgery. Not so for our children.
A state asset is the first choice. A fixed wing, if available. If not, a helicopter from wherever. Good God -- how did we ever let our children be subject to this flippancy? We never knew. We thought all would be okay. Arrangements would be in place. Now we know.
The Air Corps Gulfstream 4 jet, better known as the government jet, is used for "presidential, ministerial, VIP and military transport". But what about transport for sick children trying to get to Kings College Hospital in London for liver transplant? Should that not rate up there among its "intended uses"?
The Air Corps is not to blame in this. It made its asset available that night. It would have gotten us there in time. It has completed these types of missions before.
We contacted a private air ambulance company in Dublin after July 2 to formulate a Plan B if we got another call from London. It was ironic to learn that Health Minister James Reilly launched this same company in March of this year as Ireland's first commercial air ambulance service, saying: "As an island nation, the importance of this facility cannot be overstated."
Our Lady's Hospital in Crumlin, Dublin, has since contracted this company, also for air ambulance transport, at least until the end of August at this point.
I could go on. The findings of the report are pretty damning. None of the agencies understood or managed the risks in the model of care. No agency or person was accountable for co-ordination or accountability. There was no plan B -- ever.
The process map of events highlights 21 critical factors on the night of July 2. It was an accident waiting to happen. Blame cannot be attributed to nursing administration in Crumlin. They followed bureaucratic protocol -- use the state asset where available.
The recommendations outlined in the report, if implemented, will provide a transport service that will be second to none.
We cannot compliment the inquiry team enough for all they have done, their professionalism, empathy, and -- most importantly -- their findings and recommendations. Every family of every transplant patient in Ireland will acknowledge this and follow the implementation process with great interest.
And finally, to the agencies involved. You did your best on the night. The 76 inter-agency phone calls highlight that. There was no proper protocol in place -- bureaucratic malfunction yet again.
We hope that the recommendations will be put in place. Our children deserve this. We must protect them.
In the meantime, Meadhbh goes into her second year on the waiting list. Her condition remains unchanged. She has her good days and bad days.
This week, there were some bad days. She is in pain. She is still on the high priority list.
Another winter looms. Infections and winter flu viruses prepare. We hope she gets her transplant soon.