Adrienne Cullen on what the Netherlands and Ireland could teach one another.
When I first read about Vicky Phelan, my heart missed a beat. The parallels with my own story – which I wrote about in these pages two weeks ago – were striking, and deeply disturbing.
Like Vicky, I had been diagnosed with cervical cancer.
Like Vicky, my cancer had spread and was now terminal.
Like Vicky, my life could have, should have, been saved – except we were both let down in the worst possible way by the very people we trusted to keep us safe.
Vicky’s cancer lay untreated from 2011 to 2014 as she got on with her life in Annacotty, Co Limerick, unaware of the lesion that threatened an early death.
My 2011 test results lay unseen for two years in my file at the University Medical Centre in Utrecht in the Netherlands, also promising a life sentence of tumours, surgery, radiotherapy and chemotherapy followed by a death, decades too soon.
We were in different countries, hundreds of miles apart, but our stories touched – not least because of how we were treated by health authorities when the consequences of their errors were discovered.
Both Vicky, in Ireland, and I, in the Netherlands, sick as we are, had to become litigants and go public in order to call those responsible to account.
Minister for Health Simon Harris declared during the week that no terminally ill woman should have to drag her case to court. But that’s exactly what seems to be expected of terminally ill patients.
In Ireland, as in the Netherlands, if we don’t shout from the rooftops what has happened to us, the wheels of Big Health just keep rolling on. Nothing stops, no one is accountable, nothing is learned and other lives are put in jeopardy.
As Ireland struggles with a health system in chaos, the Dutch approach is often pointed to as an example of how to do things properly.
It is true that many aspects of the Dutch system work better than ours: waiting lists are shorter, patients don’t usually languish on trolleys in hospital corridors, health care is free at the point of use. But when things go wrong, Dutch health leaders are arguably worse than ours at being open about their mistakes and putting the needs of their damaged patients before their own reputations.
Open disclosure and duty of candour protocols are internationally recognised as therapeutic tools. They instruct healthcare providers to inform patients and their families immediately about errors, apologise to them, provide specialist support, and involve them in independent investigations.
When my cancer was first diagnosed, no one at University Medical Centre in Utrecht ( UMCU) had ever come across these concepts. My husband, Peter, and I were left to fend for ourselves.
After a five- year- long battle, UMCU finally took advice on how to implement an open disclosure programme, and the first annual “Adrienne Cullen Lecture on Open Disclosure” was held there last month. The country’s seven other university hospitals are following suit, but these programmes are incomplete, voluntary and not overseen by any health authority.
In Ireland, we see from Vicky’s case that the execution of these protocols falls abysmally short. But at least the Department of Health, the HSE and health providers are aware of the need for them. HSE director general Tony O’Brien is on record for being “unambiguously in favour of a mandatory duty of candour”. Now would be a good time, HSE.
On the subject of apologies and their therapeutic value, it was quite something for me to read that Simon Harris picked up the phone and called Vicky Phelan to apologise personally. It was the right thing to do, and the decent thing. It wouldn’t happen here.
As Peter tweeted recently: “Hell would freeze over in the Netherlands before the health minister would phone a patient to apologise or ask how she was.”
I eventually succeeded in extracting a stiff, written apology from UMC Utrecht in 2016, three years after the negligence was discovered. It was the first ever apology sent by any Dutch hospital to a patient they had harmed.
Peter and I were very impressed to learn in 2013 that, in the Netherlands, when a hospital admits medical negligence, it starts to pay the patient’s ¤ 350- an- hour legal costs.
However, 2 ½ years later, we began to see the flaws in the system.
Almost no medical negligence cases ever go to court, and so awards are pitifully low in comparison with other EU countries. Our lawyer warned us that the highest award ever paid to a patient here was to a man with haemophilia who had contracted HIV from a blood transfusion in the 1990s. He was awarded, in guilders, about ¤ 130,000. Some 20 years later, our own lawyer cautioned that I would be offered a similar amount.
Worse than that, if I died before we could settle, my claim would die with me. Here, family members can’t sue for pain and suffering caused by the death of a husband, wife, father, mother or child.
So we stopped dealing with the lawyers and decided to go public. Just before the first story about my case appeared in the Dutch daily newspaper NRC Handelsblad, UMCU and its i nsurers off ered us ¤ 545,000. It was, by a country mile, the highest ever compensation received by a patient in the Netherlands.
Although the legal systems in Ireland and Holland are very different, there was no difference in the enthusiasm with which confidentiality clauses were produced in each country.
Vicky has spoken of her disgust at this, and her solicitor, Cian O’Carroll, reported that “enormous effort and energy were put into forcing Vicky to remain silent”.
Like Vicky, Peter and I refused, point-blank, to be silenced. On this point, under the Dutch system, we got less support from our lawyer than Vicky Phelan appeared to get from hers. The mediation- type system here is focused on keeping both parties “happy” and reaching an amicable consensus. With Ireland’s adversarial system, lawyers are more firmly rooted in their clients’ interests.
The issue of such clauses reached boiling point in the Netherlands in 2016 when the mother of a 21-year-old man who died at Tergooi Hospital near Hilversum signed a clause that prevented her from speaking to the media, taking a disciplinary case against the hospital, reporting her son’s death to the health inspectorate or disclosing the terms of the agreement to any third parties. She then promptly went to the media and told them everything.
The health minister at the time, Edith Schippers, publicly condemned the use of confidentiality clauses by hospitals against their patients. She strongly urged hospi- tals not to compromise their professionalism in this way, explaining that pledges of secrecy worked against any attempt to monitor the quality and safety of care given to patients. They are also grossly insulting, distressing and hurtful to those same patients.
The relationship between the Dutch health inspectorate ( IGJ) and the hospitals is based on trust. Hospitals alone are responsible for the quality of the care they deliver and how they deliver it.
The health inspectorate doesn’t question this, and believes that hospitals can simply be trusted to do the right thing when care fails. Yet the inspectorate admits that many calamities that occur in hospitals, which should be reported to them, aren’t.
In the case of UMCU alone, my case wasn’t reported to the inspectorate when it was discovered in 2013, nor were several other cases that came to the attention of the media in 2015.
In one of these cases, a patient’s carotid artery was allegedly cut during surgery and he died as a result. His death was registered as a death from natural causes and so the coroner was not informed. This calamity was also not reported to the inspectorate until a whistleblower at the hospital contacted an investigative TV reporter.
When I look at all the similarities and differences between the Dutch and Irish responses to medical harm, what stands out most for me is the way the media and the Irish public have responded to Vicky Phelan and stood alongside her. That doesn’t happen here.
The Dutch public doesn’t speak out in the way we gobby Irish do, or write angry books like this gobby Irishwoman is doing. They are a more compliant nation and direct public opinion plays little part in social change or influencing government. ‘Polder Model’
The “Polder Model”, which the Dutch depend on to form consensual opinion, moves piteously slowly. Nothing changes here unless it absolutely has to, and any change that does happen frequently takes place away from public scrutiny.
We have no opinionated and passionate radio phone-ins here like there are in Ireland, where everyone has a view and the facts get analysed and challenged and parsed until the truth comes out. Public displays of outrage, and the strong emotions that Vicky’s case engendered, would be regarded as aberrant here.
I think the Dutch are missing a trick. We might be doing lots of things wrong in Irel and but we’ve got this right. Vicky Phelan’s case has touched a nerve in everyone from the Taoiseach to the media to the general public. How better can we support her than by lending our voices to hers?
“By God, I’m going to take these guys on,” Vicky told RTÉ earlier this week. “They have fecked with the wrong woman this time!”
Those words took my breath away. I know the place inside that they come from. I know the finely honed pain and righteous anger that forged them.
I’d just like to say to Vicky, “Go girl!” And if there’s anything I can do to help you, just say the word.
Like Vicky, I had been diagnosed with cervical cancer. Like Vicky, my cancer had spread and was now terminal. Like Vicky, my life could have, should have, been saved
Adrienne Cullen at her home in Voorschoten: she found the parallels with her story and that of Vicky Phelan (left), striking, and deeply disturbing. PHOTOGRAPHS: JUDITH JOCKEL, COURTPIX