After fighting the Dutch healthcare system for six years until she died on New Year’s Eve, Adrienne Cullen and her husband Peter Cluskey were totally at one about why so many bad things happen in hospitals in the Netherlands. It’s because, says Peter, the regulation of the hospitals is based on trust.

Hospitals need strict regulation not because they are filled with people with malign intent towards patients – though such people do exist – but because they are enormous, hugely expensive, multi-disciplinary ‘cities’ where communication is haphazard at best and the idea of any one individual having an overview is nothing short of nonsense.

Hospitals structured in this way are, of their nature, centralized, hierarchical, and therefore authoritarian, towards both patients and staff. Even very senior doctors – as Adrienne’s story shows – are expected to toe the line or remain silent. As for patients, their role is to stay meekly where they belong: in the waiting room.

When things go wrong

That’s not to be naïve. Of course, without organization nothing will work. However, the benefit of a 21st century culture of partnership between doctors and patients is that when things go wrong patients are less likely to feel aggrieved and sue, and hospitals are less likely to have their reputations dragged through the mud.

Unfortunately, there was no such culture at UMC Utrecht. Its lack of humanity was quite shocking. Worse still, there was every sign that this was its well-practiced response. Adrienne was “set adrift” – the term used by legal expert, Prof. Prue Vines – the moment it realized what had happened.

Contrary to everything you have ever seen in TV medical dramas, its answer to a woman in her 50s whose test results it had lost for two years, leaving her with terminal cancer, was: talk to us through your lawyers.

So she did. Over the next six years, Adrienne fought for and won the largest settlement ever paid by a Dutch hospital, though small by UK or Irish standards; the first written apology by the CEO of a Dutch hospital to a patient it harmed; and an annual symposium on open disclosure named in her honour, the first held amid much controversy in April 2018.

Gagging clauses

She also lifted the lid on the use of gagging clauses in medical settlements – something that was still going on despite government disapproval.

The last thing she did was to publish a terrifying account of what happened to her in a series of hospitals – UMC Utrecht, AMC in Amsterdam, and Bronovo Hospital in The Hague – over the past six years while she struggled desperately to keep herself alive.

Her book, Deny, Dismiss, Dehumanise: What Happened When I Went to Hospital was launched in March and will be published in Dutch in the autumn. As Titia Ketelaar, Royal Correspondent of NRC, tweeted, it was ‘a book launch without an author’ and all the more poignant for it.

The section of the book you are about to read is where Adrienne tells about the tensions in the run up to the first Adrienne Cullen Symposium in April 2018, when she and two of her doctors – by now her staunchest allies – stood together on the same podium and proceeded to criticize UMC Utrecht in the most uncompromising terms.

It’s a timely portion to read because on Friday, May 10, the second Adrienne Cullen Lecture will be delivered at UMCU by Andrew Foster CBE, CEO of Wrighington, Wigan and Leigh NHS Trust in the UK, regarded as one of the most innovative managers in NHS history.

The Trust has five separate sites and more than 4,500 staff and remarkably, especially in the current financial climate, all five are rated by the Care Quality Commission as Good or Outstanding.

Apart from his successful management style, Foster’s ‘quality champions’ scheme has demonstrated that substantial measurable improvements in patient safety can be achieved at minimal cost. That’s why he was chosen by Adrienne before she died.

‘I have just finished Adrienne’s book and I am in awe,’ he told me. ‘I’m just sorry we never had the opportunity to meet …’

Deny, Dismiss, Dehumanise: The final chapter…

December to April 2018

Never doubt that a small group
of thoughtful committed citizens can
change the world.
Indeed, it’s the only thing that ever has.

Margaret Meade

The day after Christmas I stopped being able to eat. We thought it was the result of too much rich food. Then we thought it was a virus. By the end of January, I had lost six kilos. I was admitted to AvL on 1 February and they discovered that I had two tumours blocking my small bowel in two separate places.

It looked at first as though surgery would not be an option. I was told they could put a tube directly into my stomach to nourish and hydrate me with a bag of food. I wasn’t gone on the idea and started to think about contacting the euthanasia team I had met in 2015. Then, with more diagnostic screening, the picture changed and surgery was an option after all.

The new tumours – Tumour 7 and Tumour 8 – were relatively high in the abdomen, in the mesentery around my small bowel, and so outside the previously irradiated areas. There was about a 15 per cent chance that my bowel would leak after surgery. But an 85 per cent chance of success sounded better to me than being fed bags of white liquid through a tube in my stomach for what remained of my life.

So off to the theatre we went. It was 8 February, 2018, Peter’s 60^th birthday. His present was that the complex surgery by the irrepressible Dr Christianne Lok was a success. Tumour 7 and Tumour 8 were successfully removed from two separate places and everything was looking good. Recovery was slow though. I spent three weeks in hospital. Starting to eat again took time and patience, as did getting back my strength.

And strength I surely needed. The First Annual Adrienne Cullen Lecture would take place at UMCU on Friday, 13 April, ironically, seven years to the day after I had undergone cryosurgery there and the ill-fated tissue sample had been sent to the lab and lost.

I was weak, anaemic and barely able to walk. If I were going to stand in front of an auditorium full of people, I wanted to look strong. I needed more Spitting Mad Adrienne and less Patient Adrienne. I had nine weeks to get myself fit enough to deliver this desperately important lecture that had been promised and denied so many times since June 2016.

The lead-up to the lecture was fraught. I was pushing hard for it to be advertised beyond the walls of UMCU, and the wider medical public was declaring its intention to attend. Suddenly, the 120-seat auditorium was not big enough and a 270-seat auditorium was arranged.

I wanted maximum media coverage to make sure our story was heard by the widest possible audience; UMCU favoured inviting certain ‘trusted media’ only. I knew that was code for non-critical. Filming was not to be allowed. Reporters were told that ‘Mrs Cullen is not available for interview’. The hospital suddenly became concerned that I was going to tell the details of the various iterations of the gagging clause. They were right. That’s exactly what I was planning to do. I’d said so from the start.

I contacted the media and told them that I was, and always had been available. I spoke to NOS radio, NRC, Algemene Dagblad, RTL, RTV, Een Vandag, The Irish Times, and several others. I contacted investigative journalist, Ton van der Ham, from Zembla.

I told him an agreement had been reached with NOS and RTL that allowed them to film some wide shots of the lecture theatre and a few minutes of my speech. After fifteen minutes, the cameras would have to leave the room. Ton said that arrangement would suit him too, and I asked him to come along and to bring a cameraman.

The atmosphere before and during the lecture was tense and uneasy. Franx, Van der Vaart and I were, understandably, apprehensive. The organizers were anxious too. They didn’t quite know what was going to happen – and they didn’t trust me. Each of the main doors had a security man on it.

Outside, security personnel watched who was coming and going. An Irish friend was stopped and questioned about who she was and asked for credentials before being allowed in. Another friend, who was taking notes while the lecture was underway, was questioned about what she was writing.

The security guard tried to take her notebook away. Unbeknownst to me at the time, Van der Haam had arrived and had been refused entry. He was promised that I would give him an interview after the lecture, and he sat down near the entrance to wait.

At the front of the auditorium, Hans van Delden, UMCU’s professor of medical ethics, who was chairing the lecture, was warning those in attendance not to film or record any part of the lecture or to post anything from it on social media.

The hospital had refused to allow its own communications department to record it for teaching purposes. The reason for this was, I was told, that Professor Van der Vaart didn’t want to be filmed. Not so. Van der Vaart had been crystal clear in a meeting just before the lecture that he was in favour of it being filmed and used for training.

In the front row of the auditorium, Margriet Schneider sat alongside Ronnie van Diemen, head of the Dutch Healthcare Inspectorate (IGZ). Beside them sat Kevin Kelly, Irish Ambassador to the Netherlands, who had been a huge support to Peter and me since he arrived in The Hague in 2016.

In the row behind sat UMCU’s head of legal affairs, Albert Vermaas, and other members of UMCU’s executive and supervisory boards. The rest of the audience consisted of division and department heads, senior medics from the Netherlands’ seven other university hospitals, patients, doctors, nurses and final-year medical students. Nothing like this lecture had ever taken place before in a Dutch hospital, or anywhere else in the world, for that matter. Nobody knew what to expect.

Van der Vaart spoke first. Then I spoke. Then Arie Franx. We took it in turns to unfold the events of the past five years and tell of the unbearable consequences they had had for all three of us. Franx and Van der Vaart concentrated on their own shortcomings (too much so, in my view). I concentrated on the more serious shortcomings of UMCU as an institution and on how shamefully it had behaved towards Peter and me.

The audience was appalled at the extent of UMCU’s failures. Someone gasped as I recounted my meeting with Jan Kimpen in 2015 when he had asked pointedly if I trusted him to consider my position and come back to me – and then never saw him or heard from him again.

There were more gasps as I displayed the text of the gagging clause that prevented Peter and me from speaking about my treatment at UMCU, what had happened, or about the settlement agreement. There was audible amazement when I said that no inquiry had ever been carried out into what had gone wrong in my case and that I was probably going to die without knowing precisely what had happened, and with those responsible (apart from Van der Vaart) never being held to account.

People were getting upset. They could see the human misery that had been caused solely in the interest of preserving the hospital’s reputation and the standing of its leaders.

In the front row, Margriet Schneider listened. At the end of the lecture, she said nothing to explain her hospital’s role in the fiasco we had just revealed. She shook my hand, thanked me, took credit for organizing the lecture, and left the room.

Outside, UMCU security guards had bundled Ton van der Ham into a room and called the police. He had, they said, been filming people, including patients, leaving the auditorium.

Van der Ham said he had approached the first people he saw leaving the auditorium to ask if the lecture was finished. He was still waiting for his interview. His cameraman was sitting away from the auditorium doors, and the camera was turned off. The police came and Van der Ham, a journalist doing his job, was arrested and kept in custody for several hours. Of course, he was never charged with anything. There would be no interview with me that day.

UMCU was no doubt glad when the lecture was over. They had, they felt, limited the damage to those who had attended on the day. The fact that there was no recording was a big plus for them. All they needed to do now was to keep their heads down and wait for it all to blow over.

I had a different plan. The latest imaging showed that the cancer had spread to my lungs, my liver and my pancreas. My left ureter was partly blocked again and the mesentery around my small bowel from where Tumour 7 and Tumour 8 had been removed in February showed recurrence. Tumour 6 in my groin had also started to grow again and I had tumour nodes coming through my skin.

I went on holiday. I spent a few days in a hotel by the sea in Ireland, finishing this book and planning my next move. Only Peter knew where I was. I wrote another email to Margriet Schneider and Jan-Willem Lammers and said it was my final request for an inquiry to be carried out into what happened in 2011.

I told them I was tired of having only an anecdotal and incomplete version of events, where professors Franx and Van der Vaart believed that the changeover from paper to electronic files had been central, but Professor Jan Kimpen, CEO at the time, denied categorically that this had played any role at all.

I told them it was unacceptable that I was floundering around still searching for answers. I pointed out that, only as a result of my persistence, UMCU now carried out independent investigations into serious-harm events because it now suddenly believed it was the right thing to do. So why was it still not the right thing to do in my case? I concluded by asking them if they were still unwilling to investigate, and, if so, I asked them to explain to me in writing why:

I got my answer the next day. Lammers replied and appeared to be agreeing … with me:

‘We also feel it is inappropriate that we did not do a thorough investigation at the time of discovery of this very serious incident, which is so harmful to you, your husband and your relatives.

‘After the lecture I have had several discussions both within and outside the UMC Utrecht whether we should initiate an investigation several years after this has happened. Most opinions were against it, mainly because necessary steps have been taken to very much reduce the chance that such a mistake happens again. However, it is, as you clearly mention in your email, not correct not to do so.’

I reread it several times, just to make sure I wasn’t misunderstanding. UMCU was going to carry out an independent investigation into what happened to my results in 2011. I would, finally, be given answers. All I needed now was to stay alive long enough for the inquiry to conclude.

ENDS

Peter Cluskey is the husband of Adrienne Cullen. Deny, Dismiss, Dehumanise: What Happened When I Went to Hospital is available in the Netherlands at adriennecullen.com