‘Open Disclosure’ campaigner to be honoured at UCC
After Dutch doctors failed her, Adrienne Cullen, now terminally ill, fought the system and won. She went public with her story about how a major Dutch hospital lost her test results, leaving her with incurable cervical cancer. She’s now using the horror of those experiences to drive change in the medical profession.
Adrienne battled and won the biggest financial settlement for medical negligence ever paid in the Netherlands and will be conferred with an Honorary Doctorate of Laws (LLD) by University College Cork next Monday (December 10).
A UCC Sociology and Philosophy graduate, Adrienne, 58, has described the parallels between her own story and that of Vicky Phelan as "striking and deeply disturbing".
In 2011 Adrienne underwent hospital tests in the Netherlands after becoming ill. Some of the results of those tests went missing. Unaware of this, her doctor assured her that she seemed healthy.
With #MedicalError now the third-leading cause of death in the US, we need to tackle both the issue of medical error itself, and also how we support patients and healthcare staff devastated by these errors.— Adrienne Cullen (@AdrienneCullen) December 7, 2018
In this, the established mindset is part of the problem.
Thanks @UCC https://t.co/Wu9JZTsmBC
However, in 2013, a review of old pathology results found that a test for cancerous tissue which Adrienne's doctor had conducted two years previously had, in fact, been positive. By 2015, tests showed it had spread. Because of the delay, the cancer was now terminal.
After four major operations in as many years to remove five tumours, her treatment has been arduous, and has included two courses each of radiotherapy and chemotherapy. At the same time, she commenced a legal battle, that resulted in the hospital, University Medical Centre Utrecht (UMCU), to accept total liability and to settle.
An independent medical consultant, agreed on by both sides, concluded that if the test result had not been lost, she would have had a 95-98% chance of being ‘cured’. Instead, the diagnosis was terminal, with a life expectancy of 11 to 18 months, which she continues to confound.
Adrienne, who grew up in Dublin and Limerick, convinced the hospital that they had not abided by any of the international norms for what is known as Open Disclosure After Serious Harm.
"My husband, Peter, and I were shocked that, having acknowledged liability, the hospital did absolutely nothing to provide practical advice, psychological support or pastoral care of any sort," Adrienne says.
"They simply threw the case to their legal department and told us: “talk to us only through our lawyers”. That’s an unacceptable way for a hospital to behave – and we weren’t having it."
After putting pressure on the hospital to hold an annual Adrienne Cullen Lecture on Open Disclosure After Serious Harm, she and her doctors delivered the inaugural lecture in April this year.
"Silence and denial have no place”, says Adrienne. "It’s only when patients and their doctors stand together that change happens."
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. The exact chain of events that led to the failure in communicating Adrienne's test results to her doctor has never been definitively established. However, her doctors believe the mistake happened because the hospital was, at the time, in the process of transitioning from paper to electronic medical records.
In the Netherlands, relatively few compensation claims make it to court, and large settlements are rare. Adrienne and her husband eventually settled with UMCU for €545,000, including €350,000 to compensate for pain and suffering, and the rest for loss of earnings. Adrienne and her husband repeatedly refused to sign a ‘gagging clause’. The hospital eventually removed it.
Adrienne’s book about her experiences has just been sent to the publishers and will be available early in 2019.
And that 100K figure from the WHO doesn't include survivors of medical mistakes.— Adrienne Cullen (@AdrienneCullen) December 7, 2018
Almost 1 in 4 patients in the EU reports the've been affected by a #MedicalError.
How well do hospitals look after these patients and their families? @UMCUtrecht?
Thanks to @UCC for this honour! https://t.co/x3eHaPTijS
Great news that Irish Ambassador to #Netherlands, @kevinthehague, is to travel to Cork to attend the conferring of an Honorary Doctorate on @AdrienneCullen @UCC on Monday. He has been a constant practical support! #diplomacy pic.twitter.com/bsOirZOkXg— Peter Cluskey (@petercluskey) December 7, 2018
It's important and positive that institutions such as @UCC show support in cases like that of @AdrienneCullen and her campaign for open disclosure after medical harm. Change only happens when established mindsets are challenged ... and that's neither easy nor pleasant! Thanks! pic.twitter.com/zuoRXTGj9d— Peter Cluskey (@petercluskey) December 7, 2018