Public campaign after her cancer test results were lost
Adrienne M. Cullen (9 November 1960 – 31 December 2018) was an Irish journalist, editor and healthcare campaigner who died in the Netherlands aged 58,[1] after a university hospital, UMC Utrecht, admitted losing test results in 2011 showing she had cervical cancer.[2] The hospital initiated an investigation into the medical mistake and in 2019 published the investigation report and hospital's reflection on it.[3]
Adrienne Cullen was born in County Sligo,[4] on 9 November 1960,[5] to pharmacist, Sean Cullen and Margaret (Peg) Cullen (née Carroll).[citation needed] She graduated with a BA (Hons) in Sociology and Philosophy from University College Cork.[6][7]
Career
In 1991 Cullen was a freelance journalist, and published a book Thursday's Child: the Romanian Adoptions Story, having also reported on Romanian topics for the The Irish Press and the The Cork Examiner.[4]
Campaign for open disclosure by hospitals
Adrienne Cullen speaking about open disclosure after medical harm, and the unacceptability of gagging clauses in medical settlements
After she had been treated at UMC Utrecht in 2011, Adrienne Cullen's test results went missing, only resurfacing two years later. The results diagnosed Cullen with cervical cancer. Only after a prolonged public campaign did the hospital investigate how the results went missing and offer Cullen an apology, although by then her condition had become terminal.[8]
In the following years, although increasingly ill, Cullen was a vocal campaigner in the Netherlands for mandatory open disclosure by hospitals when patients are damaged in the course of their treatment.[9] She revealed the inadequate systems and deep-rooted culture in hospitals that can lead them to act in ways that are self-protecting rather than in the best interests of their patients.[citation needed]
Adrienne Cullen became an activist and public speaker on disclosure of medical errors by hospitals. Among many other public occasions, she spoke at De Balie in Amsterdam in October 2018,[9] and at a TedX talk in The Hague the following month.[10] Cullen also campaigned to have gagging clauses (non-disclosure agreements) banned across the European Union in medical settlements with publicly funded hospitals.[11] There was positive talk about both but no action.[12]
As the Dutch newspaper, NRC, observed in the heading on its obituary, written by its health editor, Frederiek Weeda,[13] and published the day she died: “Staying silent was not an option for Adrienne Cullen (1960–2018)."[14]
The Irish national broadcaster, RTE, paid tribute on its prime daily news programme, Morning Ireland, on 2 January, 2019.[15] In a moving video interview with the Dutch patient welfare organisation, Patiëntenstem, Cullen explained why she campaigned despite her illness.[16] She also spoke on video for The Irish Times in Dublin.[17]
Adrienne Cullen was the first patient in the Netherlands ever to receive an apology in writing from the CEO of the hospital that had harmed her. That apology came from Professor Margriet Schneider from UMC Utrecht.[11][18]
Deny, Dismiss, Dehumanise: What Happened When I Went to Hospital ( ISBN978-9065232236), her book detailing her experiences in the Dutch healthcare system, was published in English by Dutch publisher, Uitgeverij van Brug on 25 March 2019.[19] In his preface to the book, Dr Arie Franx argued that Cullen brought to the fore "...the many lessons to be learnt ... not just by doctors and hospitals, but by patients themselves, by healthcare regulators, and by legislators."
Covering the launch by whistleblower Dutch surgeon, Dr Volkert Wreesmann,[20]The Irish Times said that the then Dutch prime minister, Mark Rutte, had described her death as "indescribably tragic", in a letter to Cullen's widower, the Irish foreign correspondent Peter Cluskey.[21]
In July 2019, King Willem-Alexander of the Netherlands, on a state visit to Ireland with Queen Maxima, held a brief private meeting with Cluskey on the fringes of a performance by the Netherlands Dance Theatre in Dublin. This was reported by the Dutch state broadcaster, NOS.[22] Cluskey wrote an account of the encounter in The Irish Times, some days later.[23]
For her courage and persistence, Cullen was conferred with an Honorary Doctorate in Laws by her alma mater, University College, Cork, in Ireland, three weeks to the day before she died.[24]
In an article published by the Royal Dutch Medical Association (KNMG) discussing new legislation on medical mistakes, the chair of the KNMG praised Cullen's campaign, using it as an example of the importance of openness by hospitals when dealing with cases of damage to patients as a result of their treatment.[25]
The Adrienne Cullen Lectures
Adrienne speaking at the first Adrienne Cullen Symposium on Open Disclosure after Medical Harm in April 2018.
An annual lecture named the Adrienne Cullen Lecture on Open Disclosure After Medical Harm was established by the hospital in memory of Adrienne Cullen.[26] The hospital states that "This lecture is named in her honour so that as a hospital we learn from things that go wrong, patients feel better supported, and through openness prevent similar mistakes from being made again."[26]
In April 2018, Adrienne Cullen was joined by two of her senior doctors, Arie Franx, a divisional director at UMC Utrecht, and his colleague, Huub van der Vaart, head of gynaecology, to deliver the first Adrienne Cullen lecture – which was heavily critical of the hospital.[27] It is possibly for that reason that no recording of the lecture, audio or video, was permitted.[12]
That first lecture was attended by the Irish ambassador to the Netherlands, Kevin Kelly; the director-general of the Netherlands healthcare inspectorate, Ronnie van Dieman; the CEO of UMC Utrecht, Margriet Schneider; representatives of the country's seven university hospitals, and by many friends and former colleagues.[12] The lecture became controversial when UMC Utrecht officials refused to allow Dutch investigative journalist, Ton van der Ham[nl], to enter the lecture theatre and he was taken away by police while waiting.[28] An official investigation found five years later than Van der Ham had done nothing wrong.[29]A video clip recorded by Adrienne with Van der Ham for his employers, BNNVARA, was crucial in that finding.[citation needed]
As of August 2024, UMC has hosted six such lectures covering a number of topics related to open disclosure and patients' rights.[26]
Vicky Phelan and the CervicalCheck scandal
Cullen wrote about the striking similarities with the CervicalCheck scandal in Ireland in a piece entitled "Vicky Phelan, cancer and me"[30] – and Phelan, in turn, penned a review of Cullen's book.[31] In an article in the Irish Times, she described Cullen's end as "another needless death".[32]
Personal life
Cullen was married to Irish journalist Peter Cluskey. In 2023 he was awarded a PhD by Dublin City University, and dedicated his thesis, "The Co-evolution of Networked Terrorism and Information Technology", to Cullen.[33]
Utrecht Science Park is a neighbourhood in Utrecht and the largest science park in the Netherlands. It is located to the east of the city. It is the largest campus of Utrecht University. Apart from the faculties of Law, Humanities and University College Utrecht, most of the university buildings are located in Utrecht Science Park. It is also a main location of the HU University of Applied Sciences Utrecht and the University Medical Center Utrecht, and houses the main university library, student housing and botanical gardens.
Else "Els" Borst-Eilers was a Dutch politician of the Democrats 66 (D66) party and physician. She was granted the honorary title of Minister of State on 21 December 2012.
University Hospital Galway is a major acute hospital in Galway, Ireland. It is managed by Saolta University Health Care Group.
VU University Medical Center Amsterdam is the university hospital affiliated with the Vrije Universiteit Amsterdam. It is rated one of the best academic medical centers in the country in terms of patient care and research. It is located next to Amsterdam's A10 ringway in the southwestern part of the city, next to the campus of the Vrije Universiteit and close to Schiphol airport.
Ronald Hans Anton Plasterk is a Dutch retired politician of the Labour Party (PvdA). He has a PhD degree in biology, specialising in molecular genetics. He is founder and CEO of Frame Cancer Therapeutics. He was appointed professor at the University of Amsterdam in September 2018.
Maastricht University Medical Center+ or Maastricht UMC+ is an academic hospital in the city of Maastricht (Netherlands) and affiliated with Maastricht University. Maastricht UMC+ is one of the eight university medical centers in the Netherlands and is part of Netherlands Federation of University Medical Centres (NFU)
The University Medical Center Utrecht is the University hospital of the city of Utrecht, Netherlands. It is affiliated with the Utrecht University. Since the foundation of the university in 1636 an academic hospital has existed in various forms. Nowadays the UMC Utrecht comprises the academic hospital, the faculty of Medicine as well as the Wilhelmina Children's hospital. In total approximately 10,000 people work at the UMCU including medical staff, nursing staff, residents, support personnel and researchers, making it one of the largest hospitals in the Netherlands.
Cork University Hospital is a large university teaching hospital in Wilton, Cork in Ireland. Its academic partner is University College Cork. It is the only Level 1 Trauma Centre in Ireland. It is a public hospital managed by the South/Southwest Hospital Group, a part of the Health Service Executive.
Johannes (Hans) Carolus Clevers is a Dutch molecular geneticist, cell biologist and stem cell researcher. He became the Head of Pharma, Research and Early Development, and a member of the Corporate Executive Committee, of the Swiss healthcare company Roche in 2022. Previously, he headed a research group at the Hubrecht Institute for Developmental Biology and Stem Cell Research and at the Princess Máxima Center; he remained as an advisor and guest scientist or visiting researcher to both groups. He is also a Professor in Molecular Genetics at Utrecht University.
The Bijvoet Centre for Biomolecular Research is a research institute at Utrecht University. The Bijvoet Centre performs research on the relation between the structure and function of biomolecules, including proteins and lipids, which play a role in biological processes such as regulation, interaction and recognition. The Bijvoet Centre houses advanced infrastructures for the analysis of proteins and other biomolecules using NMR, X-ray crystallography, electron microscopy and mass spectrometry. The institute is named after famous Dutch chemist Johannes Martin Bijvoet, who worked at Utrecht University.
René Bernards is a Dutch cancer researcher. He is professor of molecular carcinogenesis at Utrecht University and head of the section of molecular carcinogenesis at the Netherlands Cancer Institute-Antoni van Leeuwenhoekziekenhuis. Bernards is a winner of the 2005 Spinoza Prize.
Johannes Lukas "Hans" Bos is a Dutch biochemist and cancer researcher. He has been a professor of physiological chemistry at Utrecht University since 1991. He is also employed by the University Medical Center Utrecht.
The CervicalCheck cancer scandal first emerged in 2018 and involved several women in the Republic of Ireland suing the Health Service Executive (HSE) after they received incorrect smear test results for cervical cancer.
A gender identity clinic is a type of specialist clinic providing services relating to transgender health care.
The COVID-19 pandemic in the Netherlands has resulted in 8,644,095 confirmed cases of COVID-19 and 22,986 deaths.
Johannes Ernest Everard "Jan" Keunen is a Dutch ophthalmologist, professor, and politician. After studying medicine at Radboud University Nijmegen and receiving his doctorate in 1988, he worked at academic hospitals in Utrecht, Leiden, and Nijmegen. He served as a member of the Senate between 2020 and 2023. Keunen is a member of the conservative–liberal People's Party for Freedom and Democracy (VVD) and has supported banning the sale of consumer fireworks.
Debby Bogaert is a Dutch physician who is Professor of Paediatric Infectious Diseases at the University of Edinburgh. Her research considers the physiology and pathophysiology of respiratory infections.
Amsterdam University Medical Center, often shortened to Amsterdam UMC, is a collective of two teaching hospitals in Amsterdam. Formed, in 2018, after the administrative merger of the city's two university medical centers: the Academic Medical Center and the VU University Medical Center.
↑ Patiëntenstem.nu (28 March 2019). "UK versie boek Adrienne Cullen gelanceerd"[UK version of Adrienne Cullen's book launched]. Patientenstem.nu (in Dutch). Retrieved 25 April 2024.
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