The Bristol Review, an inquiry instigated in response to the anxieties of parents whose children died or were harmed at Bristol Children's Hospital, is finally due to publish its findings on 30 June 2016.

The families have awaited this report for two years, becoming increasingly concerned by what they perceived to be delays in its investigations and questioning whether it would offer them the answers they sought.

Laurence Vick is the solicitor acting for many of the families involved in the Review; in anticipation of the report's publication, he writes on the events leading to the current situation.

Bristol Children's Hospital

The Bristol story is well known but, with the Review due to publish its findings later this week, it is more important than ever to revisit the inevitable question: have the lessons of the Bristol Scandal of the 1990s been learned?

I cover this in detail because it contextualises what I see as failures in the Duty of Candour, now in its second year of operation. A critique of the narrative since the Public Inquiry into Bristol, culminating in 2001, also raises issues that still arise today and, I believe, will be pivotal in determining the success of the new Review. Some of the systemic, cultural failures at Bristol in the 90s appear to be being repeated now, a generation later. Unfortunately, these are failures that I don't believe the duty of candour as currently framed is able to address.

Reconfiguration of our child heart units is still not complete, 15 years after the Kennedy report and 25 years since Private Eye first broke the news of the Bristol scandal. The NHS medical director, Professor Sir Bruce Keogh, has described the delay in implementing the Kennedy recommendations as a 'stain on the soul of the specialty'.

As well as representing many of the families waiting anxiously for the publication of the new Review this week, I acted for the families involved in the Bristol Scandal of the 1990s, leading to the 2001 Kennedy Report which heralded a sea-change in clinical accountability, audit and evaluation of NHS services on a national level. The Bristol Scandal had the most far-reaching consequences for healthcare of any inquiry in this country, not least for the families who suffered so grievously.

The story was played out in the Inquiry and the national media, casting huge scrutiny on the hospital and those who had risked the lives of patients. Equally, a picture emerged of the difficulties faced by those who sought to expose the failings at Bristol. Recently-arrived consultant anaesthetist Dr Stephen Bolsin, who became the Bristol whistleblower, raised concerns over the alarming surgical mortality rates with his superiors at the Trust, including fellow clinicians and managers, and escalated those concerns through all levels of authority up to the top of the NHS, Department of Health and the Royal Colleges. All refused to heed his warnings and children continued to die or suffer neurological injuries. The anxiety over cardiac surgery at the unit, muted in the 1980s, had grown to a roar by the 90s.

Joshua Loveday

The narrative began two decades ago, with the death of Joshua Loveday at the child cardiac unit. Joshua underwent an arterial switch operation at Bristol in January 1995 at the age of 16 months. This became the pivotal event in the Bristol story and the catalyst for the GMC hearings and Public Inquiry into surgery carried out at the unit over the previous 10 years.

Mandy Evans, Joshua's mother, last saw her son alive on 12 January 1995, just after 7am. The surgeon assigned to carry out this complex operation was Janardan Dhasmana. Unbeknownst to Mandy and Joshua's father, Bert Loveday, Dhasmana's survival rate for these operations was well below the national average – so far below that, on the evening before Joshua's operation, a secret eleventh-hour crisis meeting was held at the hospital. Despite these concerns it was decided that the operation must go ahead.

By the following afternoon, Joshua was dead after eight hours on the operating table. When later describing this meeting, at which he pleaded with his colleagues not to allow the operation to be carried out, Bolsin said he was overruled: he had been in a minority of one and his colleagues agreed that it must proceed. Professor of General Surgery Gianni Angelini contacted the Department of Health and asked it to intervene and stop the surgery. Officials contacted the Trust's chief executive, Dr Roylance, who said this was a clinical matter in which he had no right to intervene. The Department of Health said it had no legal power to halt the operation.

Bristol Royal Infirmary – supra-regional centre

Two surgeons, Dhasmana and Wisheart, were keen to keep Bristol at the forefront as a leading paediatric cardiac surgery unit, for which it received additional funding at that time as a supra-regional centre. Apparently blinded to the unfolding dynamics, Joshua's surgeon, Dhasmana, seemed wholly unaware that there was a problem. In his evidence to the Public Inquiry, he said he was shocked to learn of the severity of the situation, and why people had been so concerned about his 'learning curve'. In fact, he had never performed the ‘switch’ procedure himself but had assisted another surgeon once, five years previously.

Dhasmana conceded that, when starting a new operation, he did anticipate some infant fatalities as he improved his skills. In his words:

'Nobody exactly knew what a learning curve was except for saying that, whenever you start any new operation, you are bound to have unfortunately high mortality . . . I do not think any surgeon wants to be seen as in a way practising with his patients, but that is the definition of "learning curve"'.

Joshua's parents knew nothing of Bolsin's eleventh-hour attempts to stop the operation going ahead, or of Bristol's record for child heart surgery, or of Dhasmana's inexperience in the arterial switch.

GMC disciplinary hearings

The General Medical Council (GMC) disciplinary proceedings in 1998, against surgeons Wisheart and Dhasmana and the Trust's former Chief Executive Dr John Roylance, focused on the unit's mortality rates for the arterial switch and atrioventricular (AV Canal) operations. The hearings lasted 63 days and resulted in findings of serious professional misconduct against all three. Wisheart was struck off and Dhasmana suspended from carrying out paediatric cardiac surgery for three years, but cleared to continue adult cardiac surgery (conclusions arrived at without any analysis of his, and Wisheart's, adult surgical outcomes, over which there had also been reported concerns).

Roylance, as a qualified doctor, also fell under the GMC's jurisdiction and was struck off for failing to heed warnings and allowing the surgical failures to continue. Arguably, this stands as a poignant warning for Trust Medical Directors today who ignore concerns raised by whistleblowers.

The aftermath of the revelations

I met Joshua's parents during the GMC hearings. Haunted by his son's death, Bert Loveday became progressively more depressed and disoriented; he had never been in any kind of trouble before but was persuaded to take part, keeping watch, in an armed robbery. He was sentenced to three years in prison and, unable to cope, was found hanging in his cell at Winson Green Prison, Birmingham, a month into his sentence. He was one of four Bristol parents from the 90s to commit suicide.

Steve Bolsin's position became untenable after the Joshua Loveday operation and he had to emigrate with his family in 1995, to take up a position in Geelong, Australia

The lack of action over Bristol, in the face of all the media reports, was extraordinary. Private Eye first exposed the huge problems at the unit under the 'Killing Fields' and 'Departure Lounge' headlines in 1992, nine years before the publication of the Kennedy report. There were then no significant reports in the media until three years later, with Matthew Hill’s BBC Close-Up West regional news programme in April 1995 and the Daily Telegraph's 'hospital took 6 years to act over baby deaths' report of 1 May 1995. These were followed by the seminal Channel 4 Dispatches documentary of 28 March 1996, and Bristol-born William Rees-Mogg’s lead article in The Times on 1 April 1996, entitled: 'Why did they allow so many to die?

It was hard to believe that heart surgery had been allowed to continue at the unit in spite of the lurid headlines in the media, ignoring the concerns expressed by an experienced consultant anaesthetist after his arrival in 1988, and that it took so long for anything to be done. Apart from suspicions or sixth senses confirmed in hindsight, no parent at the time of the operations had any inkling of the problems at the unit. What occurred amounted to a betrayal of trust - not only by the surgeons but also by all those at Bristol and elsewhere who knew of their appalling death rates.

Parents of sick children in need of life-saving surgery had to cope with the cards they had been dealt. Bristol offered hope but, in so many cases, delivered despair.

The Inquiry and the Duty of Candour

In 2001, the Kennedy Inquiry into children's heart surgery at Bristol found serious, systemic failures at a unit that had clothed itself in a 'club culture' of wilful blindness to safety concerns and poor practice, with staff closing ranks to protect their colleagues. On the eve of publication of the Kennedy report, which documented the lethal consequences of a toxic culture of denial within the collusive community operating at Bristol, the British Medical Journal (BMJ) headed its editorial 'All changed, changed utterly.' The Chief Medical Officer at the time demanded that doctors should admit to patients when an error in their surgery had occurred.

The need for a duty of candour became obvious after Bristol: a duty on doctors and hospitals to report untoward incidents and to raise concerns. They should also, if necessary, blow the whistle on failings and incompetence of colleagues or systemic issues within their hospitals, with proper legal safeguards to protect them from dismissal or victimisation if they have cause to take action.

My experience of acting for parents of these very sick children has shown that they have a heightened awareness and a desperate desire to place their children in the safest possible hands for the best chance of achieving a successful outcome. They want to know the truth before and after surgery. They want to know that the surgeon and medical team have the necessary resources and expertise. As occurred at Bristol in the 90s, and as repeated across the country since, parents have to place their trust in their surgeons, and in the cardiologists who diagnose their children's conditions and refer them for their life-saving surgery.

Patients and families seek information and explanations if treatment has failed, and this is not 'hospital complaint' territory. It should not be left for lawyers, with the benefit of expensive expert reports, to have to explain to grieving parents what really happened to their child. In many cases, sadly, this was how they learned the truth.

Children's heart surgery has unique features, in that it is carried out at a number of specialist units across the country. One unit may have a specific expertise or superior safety record in a particular procedure, less so in another. A classic example from Bristol in the 90s was the truncus arteriosus operation. Although this is a highly complicated operation on any level, parents were not informed that the unit had a significantly higher mortality than comparable units in this operation. It was revealed in a BBC Newsnight programme in October 1998 that, prior to a truncus arteriosus procedure Wisheart performed on a child in 1993, he had performed 11 of these operations in which nine children had suffered 'early' deaths. The patient in the 1993 operation sustained catastrophic brain damage.

Seeking truth after the Bristol Scandal

Those who sought explanations after their children died received limited explanations from the surgeons. In most cases, parents only came forward in response to the news reports around the time of the GMC hearings in 1998 and the Public Inquiry that began a year later. Many of the operations had been carried out three or four years previously. Letters to parents from the Trust's new Chief Executive were written in sympathetic, compassionate tones but, as he was relying on medical and surgical staff still at the hospital for his information, they were of little benefit. The hospital sought to explain that the surgeons had encountered unexpected presentations of the children's particular defects or abnormal anatomies that could not have been foreseen. I do not recall any letter accepting that the surgeons or cardiologists or other members of the team had been in any way to blame.

Parents were given no insight into the experience of the surgeons and their medical support team. Before surgery, they had been given optimistic success rates in the various procedures, which reflected national but not local experience. They were not given the choice of a second opinion or a referral to another centre with a superior safety record. None of the 25-30 sets of parents of children who had suffered brain damage over the 10-year time span covered by the Inquiry were, to my knowledge, offered any explanation, even though they had to return to Bristol for their children's continuing cardiology care. We referred to these unfortunate parents and children as the 'forgotten families'.

All of the brain damage cases from Bristol in the 1990s were litigated and contested to the fullest extent, in spite of the findings of the GMC and Public Inquiry. The cost in human lives and the financial cost to the NHS of these claims was incalculable.

A generation later, how has the duty of candour affected the position?

In many ways, little has changed in children's heart surgery since the 1990s. Parents of a child with the extremely complex Hypoplastic Left Heart Syndrome, for example, may not know, but should be told, that Birmingham is currently the leading centre for corrective surgery on this defect. Inevitably, units with a greater degree of expertise in these immensely difficult procedures are going to achieve better outcomes in terms of lower mortality rates and a lower incidence of, and ability to deal with, post-operative complications. Units with this leading national expertise should of course be appropriately resourced so that they can admit these children. Sadly, Birmingham was unable to admit the child of one of the families we acted for; that child was operated on elsewhere and died.

So, what can parents expect from the Duty of Candour if their child has undergone surgery at a unit that lacked expertise in this procedure? They may be given a frank explanation of why their child died, or why he or she suffered complications, but in the same way that they should have been informed of the facts before surgery, surely they should be informed that there may have been a quite different outcome if their child had been operated on at another centre with a superior safety record?

Although the Public Inquiry concluded that, between 1990 and 1995, up to 35 children and babies had died as a result of poor care at Bristol, we calculated that in fact as many as 170 might have survived if they had been treated elsewhere. We never knew the numbers of how many children had survived surgery but suffered brain damage and other serious injury. The Trust denied that it held data to establish this. Even now, accurate, informative data can be difficult to locate and there is still no centralised collection of data on cardiac morbidity. So, we have no measure of success or failure of a surgeon or unit other than 30-day mortality rates – if a child survives for a month, he is regarded as a statistical success, even if he has suffered injury in the process.

Surely the failure to disclose this kind of information after a child has died, or survived with brain damage, is not going to satisfy a patient's understanding of what they can expect from the Duty of Candour. Families choosing a cardiac centre often struggle to interpret the data to make properly informed decisions about units and surgeons. The availability of readily understandable data is surely a facet of a wider duty of candour across the wider NHS. Reflecting this, Great Ormond Street hospital is currently leading an ambitious National Institute for Health Research (NIHR)-funded joint project to achieve a better understanding and categorisation of the non-fatal complications that can occur in children after heart surgery.

Despite cardiac surgery leading the way in the publication of data, serious problems relating to reporting in the field remain. As recently as March 2016, following reports of long-standing problems at the adult cardiac unit at Queen Elizabeth Hospital, Birmingham, an editorial in the Guardian referred to the unit's 'disdain for the data' and the fact that, two decades on from the Bristol Scandal, the NHS 'continues to harbour some dangerously defensive instincts'.

The families affected by the Bristol Review have waited with growing apprehension for two years. Many have expressed concerns that the inquiry will not address their concerns, or that its investigations may have been impacted by influence from the Trust itself. They await the findings of the Review with open minds but, given the complex and often unsettled history at Bristol, it is understandable that they expect a fearless investigation to put their misgivings to rest.

The Bristol Review publishes its findings on 30 June 2016.