Draft:Adrienne Cullen

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Adrienne Cullen

Adrienne M. Cullen (9 September 1960 – 31 December 2018) was an Irish journalist, editor and healthcare campaigner who died in the Netherlands at 58, after a university hospital, UMC Utrecht, admitted losing test results in 2011 showing she had cervical cancer.

Biography

During her last years, although increasingly ill, Adrienne was a vocal campaigner in the Netherlands for mandatory open disclosure by hospitals when patients are damaged in the course of their treatment. Among many other public occasions, she spoke at De Balie in Amsterdam in October 2018, and at a TedX talk in The Hague the following month. Adrienne also campaigned to have gagging clauses (non-disclosure agreements) banned across the European Union in medical settlements with publicly funded hospitals. There was positive talk about both but no action.

As the Dutch newspaper, NRC, observed in the heading on its obituary, written by its health editor, Frederiek Weeda, and published the day she died: “Staying silent was not an option for Adrienne Cullen (1960 – 2018)."

The Irish national broadcaster, RTE, paid tribute on its prime daily news programme, Morning Ireland, on 2 January, 2019. In a moving video interview with the Dutch patient welfare organisation, Patiëntenstem, Adrienne explained why she campaigned despite her illness. She also spoke on video for The Irish Times in Dublin.

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.

Deny, Dismiss, Dehumanise: What Happened When I Went to Hospital, her book detailing her experiences in the Dutch healthcare system, was published in English by Dutch publisher, Uitgeverij van Brug on 25 March 2019. The book has not been published in Dutch.

Covering the launch by whistleblower Dutch surgeon, Dr Volkert Wreesmann, The Irish Times said that in a letter to Adrienne’s widower, the Irish foreign correspondent Peter Cluskey, then Dutch prime minister, Mark Rutte, had described her death as “indescribably tragic".

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. Cluskey wrote an account of the encounter in The Irish Times, some days later.

For her courage and persistence, Adrienne 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.

The Adrienne Cullen Lectures

Adrienne Cullen speaking about open disclosure after medical harm, and the unacceptability of gagging clauses in medical settlements

As part of her legal settlement with UMC Utrecht, an annual lecture named the Adrienne Cullen Lecture on Open Disclosure After Medical Harm, was established by the hospital in memory of Adrienne Cullen, who lived in the suburb of Voorschoten, near The Hague, until her death at the Netherlands Cancer Institute in Amsterdam.

In April 2018, Adrienne Cullen was joined by two of her senior doctors, Professor Arie Franx, a divisional director at UMC Utrecht, and his colleague, Professor Huub van der Vaart, head of gynaecology, to deliver the first Adrienne Cullen lecture – which was heavily critical of the hospital. It is possibly for that reason that no recording of the lecture, audio or video, was permitted.

That first lecture was attended by the Irish ambassador to the Netherlands, Kevin Kelly; the director-general of the Netherlands healthcare inspectorate, Dr Ronnie van Dieman; the CEO of UMC Utrecht, Professor Margriet Schneider; representatives of the country’s seven university hospitals, and by many friends and former colleagues. The 270-seat auditorium was packed.

Adrienne speaking at the first Adrienne Cullen Symposium on Open Disclosure after Medical Harm in April 2018.

The lecture became controversial when UMC Utrecht officials refused to allow highly regarded Dutch investigative journalist, Ton van der Ham, to enter the lecture theatre and he was taken away by police while waiting. An official investigation found five years later than Van der Ham had done nothing wrong. A video clip recorded by Adrienne with Van der Ham for his employers, BNNVARA, was crucial in that finding.

The second lecture was held on 10 May 2019. The keynote speaker was Andrew Foster, CEO of Wrightington, Wigan and Leigh Foundation Trust (a UK-based NHS Hospital Trust) who shared his experience of reducing incidents in his organization and on improving the quality of care.

During the third lecture, held in 2021, participants discussed the importance of patient and peer support after an incident and what UMC has learned about improving openness after an incident. A recording of the lecture (in Dutch with English subtitles) is available via YouTube.

Hans Brölmann (co-founder of the foundation for Openness after Incidents) gave the fourth lecture on 25 March 2022 on ‘Learning from incidents; pure culture!’. He talked about the importance of open communication by healthcare professionals after incidents or calamities. This lecture is also available on YouTube.

The fifth lecture on 10 March 2023 was on openness when something goes wrong in healthcare: the patient and the young doctor. The lecture was given by Dr Shirin Bemelmans-Lalezari and followed by a panel discussion. Again, this lecture can be watched on YouTube.

Vicky Phelan and the CervicalCheck scandal

Adrienne was also struck by the parallels between her own fate and that of the late Vicky Phelan, with whom she struck up a long-distance friendship. Vicky was first to go public about the CervicalCheck scandal in Ireland in which more than 200 women were left with cervical cancer after they received incorrect smear test results. Adrienne wrote about the striking similarities in a piece entitled “Vicky Phelan, cancer and me” – and Vicky, in turn, penned a review of Adrienne’s book. In an article in the Irish Times, she described Adrienne’s end as “another needless death”.

Earlier life

About to fly over Malta in an ancient Cessna

Adrienne Cullen was born in Tubbercurry, County Sligo, on 9 November 1960, to pharmacist, Sean Cullen and Margaret (Peg) Cullen (nēe Carroll). She has two older sisters, Paula and Carol Anne. She graduated with a BA (Hons) in Sociology and Philosophy from University College, Cork. She had many dearly beloved cats during her lifetime.

Books by Adrienne Cullen

Cullen, Adrienne (2019) Deny, Dismiss, Dehumanise: What Happened When I Went to Hospital. Uitgeverij van Brug. ISBN 9789065232236.

Cullen, Adrienne (1991) Thursday’s Child: The Romanian Adoptions Story. Kildanore Press. ISBN 1872455166