How Patients for Patient Safety are speaking out for victims of medical mistakes

When patients are let down by health service failings, the damage can be compounded by the failure of medics and managers to be open with them about what happened. One group is trying to teach healthcare professionals why the principle of ‘first do no harm’ should apply not only to the practice of medicine but to the management of mistakes too, writes Caroline O’Doherty

Suspicion, warns Bernie O’Reilly, is like a superbug. Once it gets into your system, it spreads and takes over.

“You can’t control it,” she says.

Bernie was already battling suspicion when her late husband’s medical file was stolen from the family home.

She treasures that file, not for the sad details it contains of Tony’s last three days of life, but for the signature on the consent form that is the first page she sees when she lifts the cover.

It was the last time he wrote his name, the last time he was well and looking forward to having his surgery over, returning home, and getting back to work.

I open the medical file to get ready for a talk,” says Bernie. “The consent form is the first thing inside the file and I see his signature. A signature is just so personal and when I see Tony’s on the consent form, it hits me like a death warrant.

Not long after she got the file from the hospital where he died, their house was broken into.

“The file was stolen and I thought that the hospital had sent someone to steal it,” recalls Bernie.

“A detective asked me where I’d kept it and I told him it was in a computer bag. He said to me they’ll have thought they were getting a laptop and if I go 500m either direction from here, I’ll find that bag dumped.

And that’s exactly what he did. They had dumped it and he brought it back to me. But if I hadn’t got that file back, I would probably still wonder if the hospital was behind it.

Bernie tells her story to a hall full of hospital people — doctors, nurses, consultants, administrators, risk managers — and if they shift a little uncomfortably in their seats, job done.

Fester

It’s nothing personal but Bernie brings them through the “cascade of things that went wrong” in the treatment of her husband and family in order to impress on them not only the importance of getting things right but of acknowledging when they go wrong, of telling those affected exactly what happened and learning from the experience.

Open disclosure is at the heart of her address. Without it, you leave open wounds where suspicion can fester.

Tony O’Reilly, from Ballyfallon, Athboy, Co Meath, was a slim and athletic 50-year-old farmer and father who’d never felt better in his life when he was diagnosed with bowel cancer in 2006.

Surgery to remove the tumour was scheduled for July and Tony’s only complaint heading into hospital was that he would have to take it easy when he got home to give himself time to recover.

It was harvest time and he just wanted to be out doing what he loved,” says Bernie. “He didn’t have any worries about the surgery — it was just the thought that he was going to have a recuperation period was making him cross.

Bernie wasn’t particularly worried either. It might sound a daunting procedure — an elective anterior resection with end-to-end colo-anal anastomosis and formation of a loop ileostomy — but it’s actually quite common.

“My dad had that surgery and lived to be 85,” says Bernie. “My aunt had that surgery 40-odd years ago and she lived to be nearly 100.

“I know 10 people who’ve had that operation and they’re all alive and well. It’s not the one you’d be terrified of.”

Shock

Tony had his surgery on July 10 and became unwell the next day. He was brought back to theatre, where it was discovered that there was a large leaking tear in his bowel at the spot where a section had been removed and a new join made and stapled in place.

Repairs were carried out and Tony was brought back to his room to begin his recovery all over again. But instead he rapidly became more unwell. Sepsis was diagnosed and he developed disseminated intravascular coagulation — which causes internal bleeding. Early on the afternoon of July 13, Tony died.

Despite her shock and grief, Bernie remembers clearly her encounter with the consultant who had operated on Tony.

“He was empathetic,” she says. “He felt that there had been an issue with the stapling device and promised us that he would do everything to get answers for us.

I wanted to hug him and say I’m so sorry that we’re all caught up in this horrible event. I felt compassion for him but then I sensed compassion in him too. I thought he looked like a broken man.

Bernie believed what he said and trusted the hospital would honour his commitment. But, soon after, the suspicion set in.

Missing

“Within a few days of her dad’s death, our daughter, who was 18 at the time, wrote to the hospital asking that the stapling device be kept, but it had already been removed by the waste management people.

I was given a copy of Tony’s medical file but it was difficult to make sense of it as, due to a clerical error, every second page was missing.

A month later, Bernie, accompanied by her daughter, a close friend, and Tony’s niece, had a meeting with the surgeon.

“He explained the operation and how unfortunate Tony had been in that his body had let him down,” says Bernie.

“He described Tony’s reaction as bizarre and overwhelming and he said he was baffled by it because he didn’t know how to change his practice to make any difference.”

Bernie’s friend, who had gone through the medical file with her, asked why Tony had been given three units of blood while in theatre.

“This was news to the surgeon. He went on to explain that that wasn’t his part of the operation, that the anaesthetist looked after maintaining the patient’s stability.”

Bombshell

This didn’t make sense to Bernie. If the surgeon wasn’t there to see a blood transfusion to his patient on the operating table, where was he? Then came the bombshell. The surgeon explained that he had left Tony mid-operation to attend to a trauma patient in another theatre. He was gone for over two hours before returning to complete the procedure.

Bernie could hardly believe what she was hearing.

Lots of things were listed on the consent form Tony signed, but sharing theatre time and surgical time with another patient was not one of them. The idea made me feel really uncomfortable.

Immediately after that meeting, Bernie wrote to the hospital for explanations and waited two months for a reply, all the time her unease growing.

When the letter eventually arrived, it confirmed that Tony’s operation had been interrupted by approximately two hours and 15 minutes, after his bowel had been opened, the tumour and surrounding section removed, and he was awaiting the rejoin.

Bernie felt there would surely have been an internal meeting to discuss Tony’s death and that there would be minutes recorded that might give her more information. To avoid another lengthy delay in correspondence, she telephoned the hospital directly.

“That was the day I realised I was on my own,” she says. “I was told that I had been given everything on Tony’s care, everything was in the medical file, there was nothing else.

“When I asked about the stapling device, I was told that it had been reported to the medical devices agency. I was then told that the hospital’s solicitor would deal with my solicitor.”

Bernie hadn’t engaged a solicitor. She was a grieving widow desperately seeking answers about her husband’s death but the hospital saw her only as a litigation risk.

So that was it. No advice, no bereavement counselling, nothing. I was left with an awful feeling that I wasn’t getting the truth.

And her suspicion grew.

Hostile

She accepted that sepsis was a risk of the operation — a 20% risk in a man, she would learn — but she wanted to know how that risk rose during the two hours her husband was left for another patient.

“The two-hour delay wasn’t mentioned anywhere in the medical file so I felt that other people in the chain of care were left at a disadvantage. Maybe if it had been mentioned, they would have paid a bit more attention to Tony.”

By the time Tony’s inquest was held a year later, Bernie had engaged a solicitor and she was hopeful of getting more information, but she found the experience “cold and hostile”.

Everyone portrayed that day as a normal day in a busy hospital where a man unfortunately died of sepsis, a known risk of his surgery, probably because of a faulty stapling device,” she says.

“My legal counsel was chastised for going down the route of the blame game, as it was termed, but we were just looking for answers.

“Why was the stapling gun used on Tony removed in the waste? Why, when the hospital sent four away to be tested, were only two tested?”

Blame

A representative of the multinational medical devices company which manufactured the device gave evidence that its tests revealed no flaws in its product.

The coroner recorded a verdict of death by misadventure — an unfortunate mishap for which no one was to blame.

Upset but more determined than ever, Bernie used her solicitor to push for more information from the hospital and engaged medical experts from overseas to give their opinion on the events.

Eventually, she would learn that Tony had received a precautionary dose of antibiotic before surgery but none afterwards. MRSA, the antibiotic-resistant hospital superbug, was becoming a serious problem and hospitals were trying to restrict the use of antibiotics to patients who really needed them.

Common sense would suggest that a patient left exposed for two hours in the middle of bowel surgery should really have an antibiotic, as a further precaution if nothing else, but Tony didn’t get any until he was in multi-organ failure. By that time it was too late.

When Tony became unwell, a blood test showed indicators for infection but it was dismissed as mistaken because it had been taken from the arm in which his drip had been inserted — a practice discouraged because the fluids entering the system at that point can distort results.

A second test was carried out but it was classified as routine so nobody rushed to read it, and even when it signalled infection, sepsis was not recognised.

Fear

Bernie thought long and hard about pursuing her case in the High Court but after three years going back and forward with legal and medical opinion, she had had enough.

I followed the legal route until it wore me down financially and mentally. It was enough to be battling life without my husband. It was an extremely challenging time and fear dominated my life.

“I was fearful I would lose everything or become unwell under the strain. I didn’t want money. I just wanted answers. But it was burning a hole in my pocket and it was going nowhere.

“To take a case involves suing a consultant, a hospital, the HSE, a multinational medical devices company, and a subsidiary. They were all protected. I was not. It was gambling against the odds.”

When the statute of limitations ran out in 2010 and she could no longer be viewed as a litigation risk, Bernie wrote to then health minister Mary Harney asking for help.

A few months later, she got a call from the hospital saying it was looking into her complaint. The language immediately bothered her. She hadn’t made a complaint — she had made a request for information.

Review

Another year passed and Bernie got a call from a senior HSE executive in charge of quality, risk, and safety who told her the HSE wanted to conduct an external review of Tony’s case.

She was kept informed throughout the process and in 2013, she received the final report. It revealed that there had been an internal hospital review into Tony’s death in 2007 — just as Bernie had suspected — but she had never been given an opportunity to engage in it or ask questions.

She discovered that the hospital should have had four consultants on duty the day Tony died, but only Tony’s surgeon was there and he had elective surgeries to do while also being on call for emergencies.

She learned that because of the delays and inadequacy of the internal review, and the length of time that elapsed before the external review, many of the people involved in Tony’s care and the aftermath of his death and not been interviewed and had since left the hospital.

Emergency

She found out that the patient the consultant left Tony to attend to that day, a car accident victim, subsequently died.

“That was a bittersweet thing,” says Bernie. “I had always sensed that the other person lived and I suppose I couldn’t help but think that it was at the expense of my husband.

It wasn’t that I was relieved to hear they died — there was another family grieving so I’d never think that — but it made me see the severity of the trauma, that it was a genuine emergency and that the consultant had to go to the patient who needed him most.

Bernie was adamant that this didn’t absolve the hospital, the profession, the system — whoever or whatever was responsible — from their duty of care to Tony and their duty of candour to his family.

“This hospital was on call for a large area. If there had been a minibus crash and multiple casualties, it wasn’t equipped to cover what it should have been covering.

“To have just one surgeon on-call while also doing elective surgery at the same time should never happen.

“I know surgeons might say ‘we can’t just be hanging around on-call waiting for an accident to happen’, but it needn’t be wasted time. They could be doing their paperwork or research or consultations. They shouldn’t be doing elective surgery.

They might say that there are interruptions in surgeries for other reasons — delays for biopsies, delays in transplants — but that’s all in the interest of the patient on the table. What happened in my husband’s case was not in his interest, it was in the interest of somebody else in the hospital.

“When you’re under anaesthetic, you’re kind of suspended halfway between life and death. You’re totally supported by the people around you, you’re not responsible for your own welfare anymore, you’re in a very artificial environment. You don’t want to feel that somebody’s attention is going to be taken from you and put somewhere else for any period of time.

“You wonder is this normal, is this happening all the time, but we don’t know it because people come safely through it. If Tony had come through this, there was never any need for me to know what happened that day, and it was only because I was picking away at it that I found out about it.”

Questions

To this day, Bernie still has unanswered questions.

I still don’t know if the stapling device was faulty or not used correctly or indeed perfect and used as intended,” she says.

“I still don’t know if Tony had a bleed, or the reason for blood transfusions or why blood tests which showed that Tony had sepsis were dismissed as erroneous.

“The fact I did not get open disclosure in a timely manner has deprived me of knowing the truth of what happened.”

She still has mixed feelings about Tony’s consultant. “I suppose I was angry that he accepted this situation where he was on-call and carrying out surgeries but then, can one person challenge the system?

“I believed he was affected by Tony’s death but then I remember a month later and at the inquest, he was so composed that it was like he wasn’t really affected. But then again, doctors have to get up and go to work whatever happened the day before.

“If you had been the next person being operated on after my husband’s death, you wouldn’t want a surgeon who’s a shivering shell of himself. I blow hot and cold. I can’t stand in his shoes. I can only stand in mine. I can only tell half the story.”

Safety

The HSE saw great value in that half and asked Bernie if she would come on board a programme that uses the experiences of patients and their families to educate health-service workers.

Patients for Patient Safety is an initiative of the World Health Organisation and runs in many countries worldwide but it has only been active in Ireland since 2013.

Bernie joined the group in February 2015, with some uncertainty.

“I wasn’t really sure it was for me because I still had an axe to grind and felt rather contrary,” she admits.

But telling her story for the first time was “like lancing a boil”.

The group’s members each have different experiences of health service failings and focus on particular aspects when talking to healthcare workers.

“My story fits in the area of open disclosure, sepsis, and healthcare-acquired infections,” says Bernie. “I’d be useless talking about maternity services because I had one child 30 years ago and it was a happy event with nothing to relate. But we do have a member who had a very different experience and she talks about that.”

Power

It’s important, she says, that they don’t generalise.

“It’s the power in your own personal story,” she says. It’s also important that they approach their task with the goal of enhancing learning, not punishing.

I know healthcare professionals don’t go to work with the intention of causing harm. I truly felt awful for all the medical people who were touched by my husband’s death.

“But then every day that passed opened a ravine that no one knew how to cross and it all got so complicated.”

The reaction from healthcare workers has changed even in the five short years she has been involved.

“There’s been a massive turnaround,” she says. “I’d say at the start there was a reluctance because you were dealing with people who might think, well, I’m a professor and I know everything there is to know about this condition so there is nothing that you as a patient can tell me. There was a closed attitude but I think that’s changing. I think people want to listen.

“There’s so much learning in an adverse event. I can’t bring my husband back to life but by people listening to what happened or what I feel was the cascade of things that went wrong in my case, I’m hoping that they’ll say, well, there were flaws, there were things that need to be changed, we did take our eye off the ball, things weren’t ideal that day, maybe we could have done better.

There will still be people out there who I’m sure will say, oh, that lady, she just hasn’t come to terms with her loss. I’m never going to come to terms with my loss but that’s not the issue, that’s for me to deal with in my private life.

“The issue is that things went wrong and you have so much to learn from patients. At the end of the day, the things you decide impact us, we’re your feedback, we’re your free market research, so you should be listening to us.”

Wrath

But have things changed enough?

“I read the Scally report [on the CervicalCheck scandal],” says Bernie, by which she means, no they haven’t.

“Dr Scally’s findings and observations give weight to what many individuals have felt. It’s time for people to stop dragging their heels and address open disclosure head on.

The non-disclosure issues raised in his report are recent. They happened when open disclosure was already HSE policy.

Open disclosure doesn’t just benefit patients, she adds.

“Over the years lack of open disclosure has given patients and their families anguish and given healthcare really bad press. Patients who feel let down either turn to journalists or solicitors.

“They go on Joe Duffy or up to the Four Courts. Television exposes bring the wrath of public opinion and they lower staff morale.”

Bernie was slow to bring her story to a wider audience. Her daughter has gone on to become a pharmacist so she expereinces up close the very real pressures that healthcare professionals carry.

And Tony was a very private person so she has asked for his photograph not to be published. He didn’t ask to be the public face of this initiative, she says, although she knows he would have supported her all the way. So long as she didn’t neglect his beloved cattle and tillage, that is.

“Tony absolutely loved farming,” says Bernie. “I’m the townie, London-born and raised until my family relocated to Wicklow, so I’ve had to learn on the job. Tony was a farm apprentice in my area and we met through Macra na Feirme — where love stories begin, as they say. In our case it was true.”

HSE lagged on Open Disclosure

Gabriel Scally was scathing in his comments on the issue of open disclosure in the context of the CervicalCheck controversy, describing its implementation as “deeply contradictory and unsatisfactory”.

That is not how it should be 10 years on from the publication of Building a Culture of Patient Safety, the report of the Patient Safety and Quality Commission, of which he was a member.

The commission was established by then health minister Mary Harney in the wake of the Michael Neary scandal, in which it emerged that hundreds of women had been subjected to unnecessary hysterectomies at Our Lady of Lourdes Hospital in Drogheda.

While the report was wide-ranging, looking at the issues of standards in hospitals, quality assurance and patient protection, it also explored in some depth the concept of open disclosure.

It noted at the time that the concept was not new but had been discussed, studied, implemented, and reviewed in healthcare settings around the world over the previous 20 years so, by the time Dr Scally’s report came out last month, Ireland was already 30 years behind.

According to the 2008 report, “national standards for open disclosure of adverse events to patients should be developed and implemented”.

It urged the removal of barriers to open disclosure: “Legislation should be enacted to provide legal protection/privilege for open disclosure.

Such legislation should ensure that open disclosure, which is undertaken in good faith in compliance with national standards developed in accordance with the recommendation above, cannot be used in litigation against the person making the disclosure.

It said healthcare workers should be very clear on their responsibilities.

“Open communication principles, policies, and standards should be included in the education curricula of all healthcare professionals and embedded in codes of professional practice,” it said, adding: “Specific training and support should be provided on open communication for all healthcare professionals.”

Finally, it said: “Mechanisms should be developed to monitor, evaluate and review the implementation of disclosure standards through patient feedback on the content and quality of the disclosure process as experienced by them.”

Open Disclosure formally became HSE policy in 2013. Training has been underway but to what extent is unclear. The HSE was asked for details for this article of how many staff had received training, how the policy applied to agency staff and numerous other questions but 10 days later, answers were still not available.

Mother of Cork student determined to help others

According to the World Health Organisation (WHO), one in 10 patients is harmed while receiving healthcare, a frightening statistic that amounts to 43m patient safety incidents each year.

In 1999, Margaret Murphy’s son, 21-year-old Kevin, was one of those millions but she was determined he would never be just a statistic.

Cork student Kevin died of complications from hypercalcemia, too much calcium in the blood, which is easily treatable in the early stages.

His elevated calcium levels were detected almost two years before he died, but through a litany of errors, omissions and communication failures between his GPs, his consultants and his hospital, he was treated for a worsening array of symptoms without the underlying cause being addressed.

Margaret repeatedly expressed her concerns and provided valuable descriptions of how her son was suffering, but was never properly listened to.

He was finally admitted to hospital on a Thursday in renal failure but still the extent of his illness was not appreciated and he died on the Sunday.

Margaret began a search for answers that began with sympathy and goodwill but quickly hit brick walls of bureaucracy and omerta. The family ended up going to court and in 2004, after a very stressful battle, they finally got a clear picture of what went wrong, an admission of liability and a modest financial settlement.

It was in that year that the WHO launched the Patients for Patient Safety (PFPS) initiative, a global network of patients and patients organisations who advocate for patient safety, primarily by bringing their stories and experiences directly to healthcare professionals.

Margaret was determined that other people like Kevin, and other families, be spared the kind of suffering they went through and she became one of the first tranche of 21 WHO patient advocates.

Since then, she has travelled extensively working for patient safety and open disclosure, and she is now lead advisor to more than 400 patient advocates from more than 50 countries.

In Ireland, the HSE supports the work of PFPS and its 18 local patient advocates, involving them in training sessions, consultative committees and taskforces on a range of issues to do with patient safety.

They receive training on presentation skills and their travel costs, but no fees and they can not advocate for individual cases as they all have their own jobs, families and responsibilities outside of their PFPS duties.

Anyone who is interested in learning more about PFPS Ireland or thinks they would like to get involved as an advocate, can get in touch with the HSE’s Advocacy Unit on 045-880400 or by email at opse@hse.ie.

‘Miscarriage’ foetus was still alive

Not all hospital errors end in catastrophe but if all patients adopt the ‘all’s well that ends well’ approach, serious failings can be overlooked.

Melissa Redmond had the best possible outcome to what could easily have been a terrible tragedy for her and her husband in 2010.

File photo.

Already a mother of two and in the early stages of pregnancy, Melissa from Dublin went for a check-up, only to hear the news that the foetus had no heartbeat.

Having already suffered four miscarriages, this was devastating news, leaving Melissa with only the options of waiting for nature to take its course, taking medication to induce the miscarriage, or having a D&C procedure to remove the contents of the uterus.

She had taken medication before and found it very painful so she declined that option. That was her first stroke of luck. Then she opted for a D&C but was told there was no slot available for another two days so she would have to come back.

That turned out to be a blessing because the next day, Melissa, still feeling pregnant, unlike when she had lost previous babies, confided in a friend, who urged her to get a second opinion from a GP in the area who, unusually, had a scanner in his surgery.

That GP delivered the astounding news that Melissa’s baby was very much alive and well. She went on to have a relatively incident-free pregnancy and to deliver a healthy baby boy. Throughout this time, she felt the hospital never fully acknowledged how close its mistakes had come to killing her son.

She heard locally that the hospital scanner was unreliable but found it still in use months later. Staff who attended her had no knowledge of what she had been through and at one stage the doctor who diagnosed her miscarriage arrived to attend to her again, despite her insistence that he would not be involved.

She also learned after engaging a solicitor that an internal review of her case was carried out at the hospital but she was not invited to be part of it.

She eventually went public with her story, prompting other women in other parts of the country to come forward with similar stories.

Many others contacted their hospitals looking for reviews of their cases, including some who had gone ahead with taking medication or undergoing D&Cs in the belief that the scans must be right even if their instinct told them otherwise. Sadly, they would never know whether or not their baby had died.

An independent inquiry was ordered that uncovered at least 24 cases similar to Melissa’s over the previous five years. The Irish Maternity Early Warning System was implemented in all maternity units in 2013 and there are new protocols for the detection and management of miscarriage.

Melissa is now a Patients for Patient Safety advocate.

Long road to legislation

Efforts to legislate for the management of medical errors and their aftermath have been going on for more than a decade.

When the Health Information and Quality Authority (Hiqa), was established in 2007, it was given significant powers — although it took years for them to be fully rolled out — to inspect and regulate a wide range of health and social care services.

But it has little control over the hospital sector in that it can not enforce recommendations, it has no remit at all in relation to private hospitals, and it can not investigate individual complaints.

The limits of its powers were vividly illustrated last month when the National Maternity Hospital took a successful court challenge against Minister for Health Simon Harris’s order to Hiqa to investigate the circumstances of the death of Malak Thawley who died during a botched procedure for an ectopic pregnancy.

In 2012, then health minister James Reilly announced plans to create an independent Patient Safety Authority which he said was critical to health service reforms.

Two years later, with the scandal over baby deaths and cover-ups at Portlaoise Hospital fresh on his mind, he repeated his commitment to the idea, but a few months later the plan was abandoned.

The underlying issues didn’t go away, however, and with compensation claims against the State for health service errors spiralling, the Government looked at what helped in other jurisdictions.

Apart from not making mistakes in the first place, a key influence appeared to be how mistakes were handled in the aftermath, with genuine open disclosure and early apologies being shown to have a calming effect.

The idea of mandatory open disclosure was considered in the drafting of the Civil Liability (Amendment) Act 2017 but it ultimately only set out the safeguards for people making disclosures, ensuring the information they gave and apologies they made could not be used against them in any subsequent court case.

Supporters of this approach felt it would help create the kind of culture within healthcare settings whereby open disclosure would be fostered and become the default reaction and that this was preferable to having practitioners act out of fear of the law.

However, the CervicalCheck scandal prompted a fresh look. Doctors were seen to have too much discretion over whether or what to disclose, with women and their families left feeling shut out of their own cases — sometimes with incredible callousness and insensitivity.

Mr Harris’s speedily drafted Patient Safety Bill, which was published during the summer, seeks to make disclosure a mandatory duty under threat of criminal prosecution for non-compliance.

The bill came under pre-legislative scrutiny last week and is due to be debated in the Oireachtas “this term”, the Dáil heard.

Some doctors have already expressed concern at the emphasis on them as individuals rather than the institutions they work for, and there are other aspects of the bill that are likely to prove controversial and difficult to implement.

One is the expansion of Hiqa’s powers to cover private hospitals, and also its role in the creation of a mandatory reporting system for serious patient safety incidents and follow-up audits.


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