Sunday 21 July 2019

Irish woman who battled Dutch medical system dies aged 58

Adrienne Cullen died at the Netherlands Cancer Institute Photo: Peter Cluskey
Adrienne Cullen died at the Netherlands Cancer Institute Photo: Peter Cluskey

Olivia Kelleher

An Irish woman who was a "formidable warrior" for transparency in hospital care after she was left with terminal cervical cancer arising out of medical negligence in Holland has passed away at the age of just 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 at 10.15am Monday at the Netherlands Cancer Institute. Ms Cullen was conferred with an honorary doctorate in Laws at University College Cork earlier this month.

Her husband Peter Cluskey issued a statement about her passing via Twitter. He said his lifelong partner was "appallingly treated" and it "made her a formidable warrior." He thanked all those who had been loyal and generous to Adrienne particularly the staff of her former Alma Mater, UCC, where she was so warmly received at an intimate ceremony on December 10th. He said his wife had a "special steel" and had made a huge difference.

Professor Padraig G O'Se of UCC said Ms Cullen was "a beautiful resilient and compassionate person."  An obituary appeared on Dutch media which simply stated that "Staying silent was not an option for Adrienne Cullen."

The respected journalist settled a legal action with a Dutch hospital after it lost scans that showed she had cervical cancer. 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 Ms Cullen's had conducted 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% to 98% chance of being cured.

Earlier this month in Cork she said that she empathised greatly with those impacted by the cervical check scandal in Ireland. She stated that women such as Emma Mhic Mathúna had had much of their lives stolen from them.

"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 Mathúna ) 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. Or what education they will get. Or what guidance in to the future. Money doesn't compensate them for losing their parents.

University Medical Centre Utrecht (UMCU) has admitted liability in the case but Adrienne received compensation of just €545,000. However, this was a huge sum by Dutch standards and represented the biggest pay out for medical negligence in the history of the State.

Prior to her death Adrienne insisted that gagging clauses must be banned because they are another injury inflicted on the patient following the traumatic news that their lives are set to end prematurely.

She also spoke of her belief that gagging clauses continue to perpetuate a culture of silence which allows medical negligence cases to continue unchecked.

"We are handed over to the legal departments of hospitals like we are being thrown to the wolves. I will resist against that happening so no other patients are damaged in the future.

What I have achieved in Utrecht isn't nothing but it is only the first step on a very long journey. It has to be Europe wide.

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. That would be a very good first step."

Cullen convinced the hospital that they 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 the country’s seven other teaching hospitals.

Her book, "Deny, Dismiss, Dehumanize : What Happened When I went to Hospital" will be published in the coming months. Adrienne was a journalist, a best selling author and a highly experienced English language editor. She was a travel writer and lifestyle columnist and an editorial consultant to UNESCO.

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 are always told that it is a "once off."

"These are the lies behind medical error. In reality, across the EU each year, almost 100,000 people died as a result of an avoidable mistake made during medical treatment. The unpalatable truth is that hundreds of thousands of patients who die each year, and the many more who are damaged, are not "one off's" -- and too often it seems as though lessons aren't being learned either."

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