An Irish woman who became a "formidable warrior" in pursuit of transparency in hospital care after she was left with terminal cervical cancer arising out of medical negligence in the Netherlands has died. She was 58.
Adrienne Cullen, who grew up in Limerick, successfully took on the Dutch health system and campaigned for a no-gagging clause policy in medical facilities right across Europe.
She died on Monday at the Netherlands Cancer Institute. Ms Cullen received an honorary doctorate in laws at University College Cork last month.
In a tribute on Twitter, her husband, Peter Cluskey, said his wife had forced the Dutch hospital system to acknowledge that she had been "appallingly treated". In doing so, he went on, she had become "a formidable warrior" for herself and other victims of medical negligence.
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The University Medical Centre, Utrecht lost test results that showed she had cervical cancer in 2011 only to find them two years later, by which time her condition was terminal.
The Irish Ambassador to the Netherlands, Kevin Kelly, who made face-to-face representations to the Dutch ministry of health last summer about Ms Cullen’s case, said he had been “honoured to have witnessed her bravery and integrity”.
‘Special steel’
Mr Cluskey, a former RTÉ and Irish Examiner journalist, thanked all those who had been loyal and generous to Adrienne, particularly the staff of her former alma mater, UCC, where she was warmly received at a ceremony on December 10th. He said his wife had a "special steel" and had made a huge difference.
Paying tribute to Ms Cullen, the chancellor of the National University of Ireland, Dr Maurice Manning, who had presented her with her honorary doctorate, said he had learned of her death "with deep sadness".
“While everyone was acutely aware that time was running out for her, the occasion of her conferring was joyful and life-affirming. Adrienne spoke with strength, vitality, grace and good humour, without bitterness or rancour, but on behalf of all women who fall through the cracks of a healthcare system. She insisted on their right to be heard and to be compensated when the failure of the system has resulted in their lives being cruelly cut short.
“It is hard to believe that less than one month later her eloquent and passionate voice has been silenced. She is my lasting memory of 2018. I wish her husband, Peter Cluskey, who was at her side throughout her ordeal, every consolation in his heartbreak,” said Dr Manning.
Prof Pádraig G Ó Sé of UCC said Ms Cullen was “a beautiful, resilient and compassionate person”.
In The Netherlands, the country's newspaper of record, NRC Handelsblad, in an obituary written by its health editor, Frederiek Weeda, said: "Staying silent was not an option for Adrienne Cullen."
The Dutch national broadcaster, NOS, in a report said Ms Cullen had shone a light on the unacceptability of non-disclosure, or “gagging” clause, in legal settlements for medical negligence – something that has always been opposed by the Dutch government.
Tests
She first underwent tests in the Netherlands in 2011 after becoming ill. However, she was assured she was healthy.
In 2013, a review of old pathology results found that a test for cancerous tissue which had been conducted for Ms Cullen two years previously had, in fact, been positive. By 2015 tests showed her cancer had spread and, as a result of delays, was terminal.
An independent medical consultant, agreed on by both sides, concluded if the test result had not been lost, she would have had a 95-98 per cent chance of being cured.
Last month in Cork, Ms Cullen said she empathised with those impacted by the cervical check scandal in Ireland. She said women such as Emma Mhic Mhathúna had much of their lives stolen from them.
‘Robbed’
“They have been robbed of being able to see their children’s birthdays. They have been robbed of Christmas photos, of having family holidays. Of seeing their children grow up. We have all lost so many things like that. Peter [her husband] beside me here is losing me.
"The big difference between [Vicky Phelan and Emma Mhic Mhathúna] and me is that I don't have children. The horror of being a parent is the idea that you have to leave your children behind you and not know what is going to happen to them . . . Money doesn't compensate them for losing their parents."
The University Medical Center Utrecht (UMCU) board offered a settlement of €545,000 on the condition that Ms Cullen stay silent about what happened to her, a common provision of medical negligence settlements in the Netherlands.
Gagging
Ms Cullen and her husband refused to sign a gagging clause as part of their settlement, the largest in Dutch medical history, through low in comparison with many other EU countries including Ireland.
Eventually the hospital agreed to drop the gagging demand.
Prior to her death, Ms Cullen insisted that such gagging clauses must be banned because they were another injury inflicted on the patient following the traumatic news that their lives were set to end prematurely.
She also spoke of her belief that gagging clauses continued to perpetuate a culture of silence which allows medical negligence cases continue unchecked.
“There has to be an absolute ban in the EU on using confidentiality clauses, which are gagging clauses in contracts between patients and their hospitals because they do not belong there.”
Ms Cullen convinced the hospital it had not abided by any of the international norms for what is known as “open disclosure after serious harm”. The open disclosure protocols that have since been put in place in UMCU are already being adopted by Holland’s seven other teaching hospitals.
Unusually, in a statement issued by its press office a short time ago, UMCU said it wished Ms Cullen’s husband, family and friends “strength” following her death.
Apologised
It noted that it had settled legally and apologised three years ago for what turned out to be “a sad and insurmountable mistake with the greatest personal consequences for Ms Cullen herself”. This was the first written apology ever issued by the chief executive of a Dutch hospital to a patient. It had also named an annual lecture in her honour.
Ms Cullen's book on her experiences , Deny, Dismiss, Dehumanize: What Happened When I went to Hospital will be published in the coming months.
She was a journalist, author and an English language editor. Her book Thursday's Child: The Romanian Adoptions Story chronicled the orphanages of post-Ceausescu Romania and was a best-seller.
On December 11th she wrote in The Irish Times about her experiences. She said people like her were always told that it was a "once-off".
Ms Cullen was the youngest of three daughters. Her father, Seán, was a co-founder of the pharmaceutical distribution firm APD. She went to Laurel Hill secondary school in Limerick and later to UCC where she graduated with a degree in sociology and philosophy.