Clare Bowen is an inspiration. She has suffered appalling medical harm but is determined to use her experiences to improve the training and insight of NHS staff, enshrine safety at the heart of healthcare and to prevent the tragedy of ‘have a go’ surgery happening to others. A film of Beth’s story is available at www.patientstories.org.uk
On July 27th 2006 Clare and Richard Bowen took their five-year old daughter, Bethany, to hospital to have her spleen removed. Like her brother Will, she had hereditary spherocytosis (spherical blood cells) and his life had been much improved by the operation.
Will had laproscopic surgery with the same surgical team, and they agreed it was the right choice for Beth to minimise the scar. The junior doctor ‘gained consent’ by saying: ‘Everything as planned. No need to talk about complications they’re not going to happen.’ They kissed Beth goodbye and told her they’d be there when she came out of theatre.
At quarter past six, the doctors came to Beth’s room, with no warning. One had blood on his gown. They stood in front of the Bowens and said, ‘Something awful has happened.’ They couldn’t say that Beth had died until Clare asked them directly. They told the Bowens they’d accidentally cut through a blood vessel with a new piece of equipment and they couldn’t save her. They had opened Beth up and found multiple cuts to her aorta, stomach and bowel.
More information proved harder to come by. A year after Beth’s death, the Bowen’s were still having meetings with the hospital management, who kept changing their story. They had to fight the hospital for copies of Beth’s notes, which turned out to be woefully inadequate in places and revealed errors and incorrectly followed procedures. They had a meeting with the senior surgeon and found out the new piece of equipment was a morcellator; a rapidly rotating blade used to dissect organs internally. The trainee surgeon was using it at the time of Beth’s collapse and it was the only piece of equipment in use at that time.
Despite such a catastrophic failure, there was no independent investigation. All the supporting evidence was thrown away: the bag holding the spleen, the disposable parts of the morcellator and most importantly the blood that Beth had lost during theatre. The surgical team had not kept records that are compulsory in a theatre, such as the labels from blood transfusions given to Beth so there was no accurate knowledge of how much blood she was given.
The Bowens discovered that the team had walked into theatre that morning, found the morcellator was free in the gynaecology theatre and a chance remark of ‘how about using a morcellator?’ resulted in a catastrophic tragedy. The surgeons had a quick briefing, asked a nurse who had never heard of the equipment to put it together and then didn’t read the manual or safety instructions. The manufacturer of the morcellator refuses to put it into a hospital without giving formal training sessions to whoever’s using it.
The operating surgeon had fifteen minutes of verbal, undocumented ‘training’ from a consultant who had used the morcellator five years previously. They completed no risk assessment and did not follow correct procedure in implementing a new technique into surgery. They had made no attempt to retrieve the discarded theatre items even though they knew of their importance in establishing the cause of death.
The surgeon with experience of this procedure was not even in operative area during the operation, but watching the view of an internal camera. This procedure had never been done on a child anywhere in Europe. Indeed, the morcellator wasn’t licensed for use in children at all. Had they known this, the Bowens would never have given their consent for the operation.
The Bowens did not want to sue for negligence, but found that legal action was the only way to force the hospital to release information to them. They received £10,000 – the price of a child’s life – and paid for the installation of an adventure trail at Beth’s school. However, they put great faith in the coroner’s inquest to help understand not just what had happened, but why it had been allowed to happen, and what steps would be taken to protect other children in future.
Clare Bowen describes the three-day ‘inquest’ as horrific. A specialist who had never seen a morcellator before, said that he used new pieces of equipment all the time, adding risk to patients, but didn’t see the need to inform parents prior to surgery. The trainee surgeon said under oath that he believed his fifteen minutes training on the equipment that day was sufficient. The coroner recorded a narrative verdict stating “damage to the aorta and adjacent organs by some form of unspecified surgical instrumentation”. Richard found avoidance of naming the morcellator as the cause of death particularly hard to take. On February 12th 2008, after an unbelievably stressful 18 months, he collapsed died of a heart attack aged 31.
Remarkably, Clare Bowen has continued to campaign for NHS staff to have training to understand the human factors that can lead to, or prevent, disastrous decisions.
Clare also wants the NHS to introduce rapid “independent investigation” of serious incidents and to ensure that learning from disaster is widely communicated as is routine in aviation and other safety critical industries.
As part of this work Clare has made a film of her families experience. “Beth’s Story” is produced by PATIENTSTORIES (www.patientstories.org.uk) an independent group of journalists, filmmakers and clinical human factors experts who document and analyse the stories of patients and professionals with the aim of learning lessons in ways that break the cycle of repeated errors in healthcare.
In 2007, less than a year after Beth’s death, six-year-old Shelbey Bomkamp of Iowa, underwent a laproscopic splenectomy for exactly the same condition. An almost identical procedure was used and the same disaster occurred. The morcellator punctured the bag used to collect the spleen’s parts, cut major blood vessels and severed part of Shelbey’s bowel. She suffered serious blood loss and permanent brain damage. She is now fed through a tube and can only communicate by blinking her eyes. She will require 24/7 care for the rest of her life. The operating surgeon was found to have performed the operation in a manner that was “inconsistent with medical standards” and damages of $17.3 were awarded.
The Department of Health admits ‘a culture of denial’ in the NHS (Safety First, 2006) and a National Audit Office report in 2005 found that only 24% of NHS Trusts routinely provide information to patients about ‘safety incidents’ and 6% never do it.
Patients’ stories play a crucial role in bringing about the cultural change that is undoubtedly needed to make open disclosure a normal part of medical practice.
Clare Bowen has begun to see this change take place when she recently visited the hospital involved in Beth’s case to show them the film she has made with PATIENTSTORIES.
‘We had many meetings with staff at the hospital since Beth died – always, it seemed, without any true understanding on their part of what we were going through and why we needed to hear the truth about what happened,’ she recalled.
‘But everything changed when we sat together and watched the film in which I had the time and space to tell the story of Beth’s treatment by the hospital from our point of view. For the first time, I was aware of true regret and empathy.
‘It was a huge breakthrough that gives me hope for the first time that the hospital’s policy on open disclosure will change fundamentally – and that can only help to prevent a recurrence of the kind of events that led to the death of my daughter and my husband.’
The government’s white paper, Liberating the NHS, made a commitment to ‘require’ NHS staff to be honest and open when things go wrong, and the Health and Social Care Bill aims to make it a contractual obligation. We owe it to the Bowens and many families like them to make sure it happens.