Amsterdam, De Balie october 29th, 2018
When I was a patient at UMC Utrecht in 2011, something went very badly wrong. As a consequence, I’m now in the last months of my life – despite having undergone 4 major surgeries, 2 courses of chemotherapy and 4 courses of radiotherapy.
What went wrong was that my test results, which showed I had cancer, were sent out of UMCU’s pathology department – but never found their way to my patient file in gynaecology. As a result, my doctor didn’t see them until a research fellow found them by accident 2 years later.
By the time I was eventually given the news in April 2013, a large adenocarcinoma, a tumour, had grown in my cervix.
I was in shock. So was my husband, Peter. Not only were we dealing with a sudden and unexpected cancer diagnosis, we were dealing with negligence on the part of the hospital I had trusted to look after me.
Every day, when we went to UMC Utrecht, we expected someone representing the hospital to approach us and say: “We heard what happened to you and we’d just like to say how sorry we are and reassure you that we will do everything in our power to find out what went wrong.” We expected someone to say: “How are you coping? Tell us how we can best support you. We are here for you.”
But nothing like that happened. My doctor did his best and his genuine integrity shone through. But he didn’t really know what had happened. He was also no longer my doctor because he is not an oncologist. So I was transferred to a cancer specialist and expected to just get on with my treatment as though nothing had happened. I was sent for MRIs, X-rays, blood tests, but no one treating me along the way had any idea that I was the victim of medical negligence, so they had no understanding of what was going on with me. Sometimes, I tried to explain. But I soon realized the people treating me didn’t believe a word I was saying. So I shut up and tried to endure this hell in the silence the hospital had imposed on me.
What should have happened? We needed a contact person in the hospital – a professional trained to deal with the victims of calamities, and their families … someone who would be used to such situations and would be able to provide the practical, emotional, psychological, career, financial, medical and legal help we needed. For the first couple of weeks, we naively believed that such a person existed and would reach out to us soon.
But there was no such person. UMC Utrecht did not have the capacity to act appropriately with patients after a calamity. They didn’t even know that there was an appropriate way of responding to patients they had seriously damaged. We just became a matter for the hospital lawyers to deal with.
No apology came from the hospital. No investigation was being held into the incident which is costing me my life. There was nobody writing a report on the Cullen case. The hospital board was unaware of the calamity. No one reported anything to the health inspectorate. The message we were getting loud and clear was that nobody in charge had any interest in hearing what had happened to me or in finding out how it had happened. There was no record anywhere in the hospital that anything had gone wrong in the treatment of Adrienne Cullen – and there is still no such record.
In July 2013, I moved to another hospital, and tried to recover sufficiently to get back to work and pick up the pieces of my life. But in the spring of 2014 our thoughts found their way back to UMC Utrecht. Peter in particular was still seething about the shameful way that I had been treated after the cancer had been diagnosed. The hospital had accepted legal liability for medical negligence, but as far as human contact went, they remained tight-lipped. And I still had only the vaguest idea what had happened to cause the calamity.
My doctor had speculated from the outset that the changeover from paper to electronic files had been at the root of the errors, but no one had ever officially substantiated his hypothesis, and had certainly never contacted us to give an insight into precisely how this changeover had caused my cancer results to lie unseen for two years.
In 2015, the cancer returned. The cancer markers in my blood were rising. A PET-CT scan revealed two metastases. With that news, my fate was sealed. Metastasized cervical cancer is terminal. The only question that remained was how long I would survive. The wisdom at the time was that I might not have very long. The average survival time for women like me was 11 to 18 months.
My lawyer communicated the news to UMCU. No one representing the hospital saw fit to contact me. The silence I had experienced in the immediate aftermath of the calamity continued. The message it conveyed was the same: nobody had any interest in hearing from me or about me.
Our lawyer found an independent medical expert to look at my case. He was Professor Roy Kruitwagen, a gynaecological oncologist in Maastricht University Medical Centre. He examined the details of my case and concluded that if UMCU had not made errors in communicating my cancer-positive result to my doctor in 2011, I would not have needed the extensive treatment I had undergone, the cancer would not have metastasized and I would not be dying.
UMCU was sent a copy of the report. Did anyone from the hospital get in touch? I think by now you know the answer to that one.
So I contacted them. Which was no easy matter. This is how communication took place between UMC Utrecht and their patient …
SLIDE 5 THEN SLIDE 6 THEN 5 AGAIN THEN 6
I was not prepared to die without making sure that UMC Utrecht knew the extent of the damage they had caused and its consequences. I wanted to tell them exactly how much compensation their loss adjustors were going to offer me to make up for losing my health, my wellbeing, my career and now my life. Our lawyer had told us that the highest amount ever paid to a patient in the Netherlands for pain and suffering had been back in the 1990s when a man being treated for haemophilia was infected in a hospital with HIV. He was awarded, in guilders, the equivalent of €160,000. He later died of AIDS. No one else had ever received a sum that high. I was, I was told, unlikely to be offered much more than that. I was speechless. There were cars in the UMC Utrecht car park being driven by hospital leaders that were worth more than that. Is that what my life amounted to?
I was also acutely aware of time ticking past. I knew that if I died, my claim would die with me and UMC Utrecht would not be obliged to pay any compensation for damaging me. Dead patients are much more cost-effective than dying ones.
The compensation my husband would be entitled to would be calculated by the loss adjuster based on my net earnings. His compensation would be means-tested – in that any small pensions would be subtracted from the hospital’s liability. This calculation is not carried out to favour the patient’s family. By the time everything was taken into consideration, UMC Utrecht would have had to pay Peter very little to compensate him for my death. I was seriously worried. Piling financial anxiety on top of an already impossible situation was having a serious impact on my health.
I asked to meet the hospital’s chief executive, Professor Jan Kimpen. I was given an appointment for 2 July. Professors Arie Franx and Kit Roes would be there too. I felt sure I could explain my predicament to these three men, three human beings, three doctors, and make them understand that UMC Utrecht had an obligation to put right the damage they had caused. Compensation for damage someone has caused you is not like a lotto win. We didn’t want to get rich, we just wanted our lives to continue on the same financial footing they had before I got sick.
I started the meeting by showing them some photos I had on my iPad – pictures of me in Istanbul on holiday (SLIDE 7), in a trattoria in Amsterdam with my friends, Tati and Jaime (SLIDE 8), at the flower market in Voorschoten with my big sister, Paula (SLIDE 9) … a picture of my grandnephew, Leo (SLIDE 10), of the Christmas tree (SLIDE 11) that I always decorate and I always get teased about for putting too many lights on … a picture taken with Peter in Jerusalem (SLIDE 12) with me on a camel called Sammy … a more recent picture taken in Stockholm (SLIDE 13) with my friend, Yeokyung … a picture of my (SLIDE 14) garden … and a picture of my 18-year-old cat, (SLIDE 15) Georgie, the boss of the household.
I was trying desperately to paint a picture of my life, and to show what would be ending when I died. Even though they were doctors, I wasn’t sure they understood what dead meant. I wouldn’t be on any more boats on the Bosphorus, Tati and Jaime would be having their pasta without me, I wouldn’t be at the flower market any more with my sister, or on holiday with my husband. My cat wouldn’t know where I had gone, the garden would become overgrown and the Christmas tree wouldn’t have anywhere near enough lights on it. That’s what dead means.
They took the point, and Professor Kimpen asked me what they could do to help. I explained about the compensation that we were likely to be offered, and the prospect that I would die before I received it. I think they were surprised by what I was likely to be paid in compensation, and that financial concerns rather than my own health were at the forefront of my mind.
After a fairly intense 45 minutes or so, Jan Kimpen said it was clear that he needed to do something about this and to do it fast. He asked me if I trusted him. I told him it depended on what he did next.
What he did next was he went on holiday. And I never saw him or heard from him again.
Throughout July, I chased the three professors. Arie Franx and Jan Kimpen had gone on long holidays. Mid July, Roes replied to my email that he would be in touch with a proposal through my lawyer. So we were back to that again. That’s not what had been agreed. I persuaded Kit Roes to talk to me directly, and we spoke on the phone on 20 July. He told me that the hospital wanted to offer me €180,000 in compensation for what they had done to me – much the same as what had been awarded to the HIV victim twenty years earlier. They wanted to offer Peter €192,000 to make up for the wages I wouldn’t be able to earn after my death.
That conversation didn’t go well. I felt insulted and despairing; Kit Roes really couldn’t understand what the problem was. He tried to soften the blow by telling me the amount would be tax free. That didn’t help.
After the phonecall, I received an email from him telling me that any further communication would be through the lawyers.
So again, no support was available for the patient UMC Utrecht had damaged. As soon as I was harmed, lawyers were the ones who decided what would happen to me, and they didn’t have any care plans, empathy or intention to provide support.
I’m pretty stubborn though. I didn’t give up trying to make the hospital understand the consequences of their actions, their duty of care to us and their responsibility to put things right. And something had happened that made Peter and I realize we were not crazy and that what we had expected from the hospital from Day One was not at all unreasonable.
We met and spoke to Professor Prue Vines, an Australian Law professor whose specialist subject is on apology after harm. She was a visiting professor in the Free University in 2015 and she heard about my case. She listened to what had happened and how UMCU had responded after the calamity was discovered. SLIDE 16 Her verdict was that I had been “set adrift by the hospital”.
She promised to send a letter to the UMCU board explaining the systems that existed elsewhere to support patients after serious harm. SLIDE 17 She described in detail the systems and protocols in place in Australia, the UK and America – the ones she was most familiar with. They sounded so humane in comparison with what I had experienced. She said she believed the lack of such a system in UMCU severely compounded the damage and trauma I had undergone.
Around the same time, we also spoke to a journalist from NRC. The hospital wasn’t responding to our own efforts to communicate with them in a meaningful way, so we decided to exert pressure by another means. We saw the media – mainstream and social media – as a way to get through to the hospital via public opinion.
And it worked. Suddenly UMC Utrecht engaged. They wanted to make a newer, higher compensation offer. They suggested €300,000 to compensate me for what they did and a further €200,000 to compensate Peter. We made a counter suggestion just a little higher, and we agreed within days for €545,000.
Of course it wasn’t enough. It was never going to be enough, but added to our savings, it would allow Peter and I to continue to live as we had before, and for Peter to have the same security as he would otherwise have had into his retirement and his future.
Our huge relief at coming to a settlement with UMC Utrecht didn’t last long. In early November, just a few days after we agreed to settle, we were informed that the agreement would contain a gagging clause. SLIDE 18 It was written into the draft contract and it was in Dutch so our lawyer translated it for us.
We were horrified. Unfortunately, at the time, we were unaware that the health minister, Edith Schippers, had spoken out strongly against including such clauses in contracts between hospitals and patients. She had explained that such offensive clauses were the total opposite of the transparency that is needed in the health care sector in order to monitor errors, learn from them and create better healthcare. They represent a culture where the preference is to hide what is happening, to deny mistakes and to sweep medical negligence under the carpet.
We refused to sign. There was no way we were ever going to sign anything that meant I could never speak freely about what had happened to me. And then there was silence from UMC Utrecht. We were left to “sweat”. And sweat we did. My health was getting worse. No one was sure what was happening to me, and I was afraid that I was facing death leaving a financial problem behind me for Peter to deal with. I wanted the compensation that UMC Utrecht had offered us, but I wasn’t able to bring myself to sign an agreement that meant I could never discuss it. Peter persuaded me that would be the wrong thing to do.
On 9 November, my 55th birthday, we heard from our lawyer again. He wrote to us that he had made contact with his counterpart on the other side and had told her that we were not willing to agree to the gagging clause. He wrote that she had been adamant that the settlement agreement must contain “something of a gagging clause”.
So he attached another, amended gagging clause. It wasn’t much better, so we didn’t sign that either. Later that day, a third form of wording arrived from the UMC Utrecht side. Under this one, we were still forbidden to proactively contact any media, but if we did talk to them, we had to confine ourselves to facts and not make any negative comments.
We believed that such a clause could end us in a lot of trouble. In the circumstances where medical negligence was going to cost me my life how could we describe the facts without making negative comments?
So we didn’t sign that gagging clause either.
On November 10, we had another email from the lawyer. The gagging clause had been greatly softened, almost removed. Now we were allowed to disclose the facts of the case and describe the impact it had had on our lives. It instructed us not to use invective or not to say or write anything that would harm the reputation of UMC Utrecht. But we never would have done that anyway and had already agreed that we would never breach the libel or slander laws. The removal of the prohibition to speak and write freely and truthfully about my story was all we had ever wanted.
My next priority was to get to the bottom of events surrounding the handling of my data in 2011. Now that the legal issues had been dealt with, my doctors were finally allowed to speak freely to me.
Professor Arie Franx, my doctor and I met just before Christmas. It was a difficult meeting in many ways, but it also cleared the air and formed the foundation for the ongoing support I have received over the past two years from these two doctors. It was very late in the day to be starting to provide such support, and too late to prevent a lot of damage from being done, but it was welcome nonetheless and their support has been instrumental in my well-being.
I didn’t get many of the answers I wanted at that meeting, but they told me what they had been able to find out. SLIDE 20 Huge gaps remain in the understanding of what went wrong and many questions still remain unanswered:
- Was the calamity the result of the move to electronic files?
- Were adequate (or any) safety measures put in place to give extra protection to patient data during this transition?
- Were outside companies handling this patient data?
- If so, who were they? who was supervising them? and what training were they given?
- Were they allowed to access patients’ results straight from the pathology lab? In the policlinic? Elsewhere?
- Has anybody ever contacted the outside contractors to discuss my case with them?
- Have other hospitals using the same contractor been approached so that they can check for similar breaches?
- Was UMCU among the hospitals who allowed its patients’ paper files to be processed by prisoners in Leuven jail?
At the meeting, I asked for an apology from the hospital. UMC Utrecht had issued a statement to NRC in November where the new CEO, Professor Margriet Schneider said how they had failed me, how I had not received any support and how bad they all felt about the whole matter. But it seemed to us a strange thing for a CEO to make a public statement like this when no one representing the hospital had said any of those essential things to us personally. We were reminded of professor Prue Vines and her description of the importance of an apology as a therapeutic tool. Arie Franx said he would ask the chief executive if she would be willing to apologize on behalf of the hospital.
And she did. She sent me a letter. And it helped. It was, I was told, the first ever letter of apology written by a hospital CEO to a patient damaged by any hospital in the Netherlands.
Another thing I asked for, and not for the first time, was for a proper investigation to be carried out into my case. Arie Franx, who said that he too would favour such an investigation asked the board to carry out a SIRE. The board said “no”. They felt that the hospital would learn nothing from such an investigation, so they would not do it.
In the spring of 2016, I was back in touch with Professor Schneider again. I reminded her of a conversation that had been had … through our lawyer (of course) … while we were trying to agree the settlement. Peter had asked that UMC Utrecht show their commitment to open disclosure after serious harm by offering an annual award to the doctor who presented the best paper on the subject during the year. The hospital had declined to include this in the settlement agreement, but had agreed to give it “sympathetic consideration”. I was afraid that they had forgotten about it, so I sent a letter to remind Professor Schneider.
I was very pleased when she replied that SLIDE 21 “We would like to organize a yearly symposium on open disclosure. The key note of this symposium will be the ‘Adrienne Cullen Lecture’. Persons awarded for this lecture will have demonstrated extraordinary achievements on open disclosure in the past year.”
It was a much better suggestion than ours and gave much more scope for exploring the matter and developing an open disclosure ethos and system that best suited UMCU.
Unfortunately, it took a further two years of emails, requests, refusals and long silences from the board before the hospital finally allowed the First Adrienne Cullen Lecture and Open Disclosure Symposium to take place at the hospital. It seems that the hospital leaders had not anticipated that the organizers would invite me and my doctors to deliver the first lecture ourselves and to tell the Adrienne Cullen story. That was more than they had bargained for.
On the day of the lecture, the crowds were big and the atmosphere at the hospital was tense. Security guards stood at the top of each set of steps in the auditorium. They watched who came in. Certain people were questioned about their entitlement to be there – even though it was a public meeting. Warnings were given by a UMCU spokesperson not to post anything about the lecture on social media. Filming and recording were restricted to two TV channels who had promised to record me only and to leave after ten minutes. One of the country’s leading investigative journalists, Ton van der Ham, was refused entry and physically removed from the vicinity of the lecture, even though I had specifically invited him to be there. He ended up in police custody and was threatened with legal proceedings until the public prosecutor threw out the file.
The way UMC Utrecht chose to handle the lecture and limit the reach of its message (and its lessons) by refusing to allow it to be filmed, is one of the reasons I was invited to speak here tonight – where there are no restrictions on who attends, where all journalists are welcome and encouraged to ask questions, and where members of the public can engage in the debate on this most important matter of what hospitals should do when mistakes are made.
I think the late Professor Bob Smalhout, who was a professor at UMCU for many long years, would be pleased by what were doing – smashing the silence that has for decades characterized hospitals’ responses to medical error. We’re talking about it at last, and that’s a start.
I think he’d also be pleased to know that finally, 5 years after first asking for it and 7 years after the calamity itself, the UMCU board has finally given in and agreed to hold an investigation into what happened to me at the hospital.
What’s missing though here tonight is the presence of anyone from UMCU. And it’s not because they weren’t asked to come. Last I heard, they were still “thinking about it”. Looks like they’re still not ready for transparency and open debate.