The Bristol Files and the Untold Story of Brain Damage

The thirtieth of September 1993 is the day Mr Wisheart operated on our son Ian and it is the day his and our lives changed for ever.

Mr Wisheart told us the operation was a success and my wife, daughter and I held hands around Ian’s bed and gave a prayer of thanks.  Ian was an alarming sight; he was covered in tubes, totally comatose and on a respirator.  We maintained a bedside vigil beside Ian throughout the day and until late at night.    I sat for hours with Ian, holding his hand, praying and talking to him.  I thought that perhaps subconsciously he might hear and be comforted.  I wanted to be there for Ian when he “awoke”.

The operation and the period in intensive care when Ian was unconscious merges into a single hazy entity, but certain events stand out like jagged lightening strikes.  When Ian was weaned off drugs his body shook uncontrollably from what we were told were severe withdrawal symptoms due to the drugs being withdrawn too quickly.   I will never forget when Ian finally emerged from his drug induced comatose state and opened his eyes for the first time. They had a simply unbelievably awful emptiness.  When Ian’s head was moved from side to side his eyes just dropped to the corners of his eyes as if gravity was too much for them.  I was appalled – it haunts me to this day.   Even now, almost eighteen years later, I am still haunted by this memory – writing of it has reduced me to tears.

Dr Schutt, a paediatric neurologist, examined Ian on the 15th October.   He put Ian on his lap and pretended to hit him – Ian’s vacant stare never flickered.  He took a small torch and shone them in Ian’s eyes; apart from pupil dilation there was nothing.  Dr Schutt confirmed our fears, saying “he’s brain damaged it happened on the bypass”.  He said that our son needed normal stimulation in a loving family environment and the sooner we left hospital the better.  Shortly afterwards a nurse wanted to sedate Ian to stop his shrieking which was disturbing the other children on the ward.  Later that night I felt desperately ill.  I suffered stomach cramps and passed blood in my stools.

We did not cope. Ian’s endless shrieking and our inability to console him left us exhausted and suicidal. I went through the motions at work, but could no longer concentrate.  I remember Dr Rawlings, the Managing Director of our mining company, popping into my office to ask how Ian was.  As I started to tell him I just broke down – he immediately took me out for some double brandies and then packed me off home in a taxi.  At one stage I thought I was developing asthma.  I frequently woke gasping for breath and felt as if I was “drowning”.  I had to sit quietly, taking slow deep breaths before I was okay.     I finally gave up work on the 28th October 1994.  I could not concentrate or motivate myself.  I just could not go on.  There was a time when throwing my career away would have been unimaginable.  For months there was not a day that I didn’t cry uncontrollably – I hadn’t cried since childhood.  Everything about life seemed so unreal and meaningless.

Prior to the operation Mr Wisheart had said that brain damage during heart surgery is so rare nowadays that it just does not happen, but if it did, they would know. We returned to England to find out why Ian had suffered the damage he had.  In 1995 we instructed our solicitor to initiate proceedings against the BRI, the first step being a pre-action discovery hearing in the High Court where in September 1996 we obtained a court order entitling us to information regarding Mr Wisheart’s surgical performance.

The GMC Inquiry

In 1997 we submitted a complaint to the GMC regarding Mr Wisheart, Dr Roylance and the cardiologists.  Deeply concerned at how the GMC was approaching their hearing we took the GMC to judicial review on the 6 and 7 October 1997.  The Judge decided that the GMC had taken over our complaint and that as such the GMC were now the ‘complainant’ and we had no more legal standing than the general public and therefore had no right to challenge the GMC’s conduct of the hearing.  Just prior to the Judgement being announced on the 8th October, I was told that if we accepted the judgement and agreed not to appeal, that the Honourable Mr Justice Lightman would not award costs against us.  Prior to the hearing we had been advised that it was an ex-parte hearing and one would only be responsible for one’s own costs. I was told that the GMC’s costs were approaching 80,000 pounds and given five minutes to decide.  After spending the previous two days watching the Judge verbally kick our barrister around whilst engaging in a mutual admiration session with the GMC’s QC and barrister I knew this was no idle threat.   I accepted; I could not afford this.   Interestingly, the Judge’s brother was a consultant at the BRI.

Bronwen and I were called as witnesses on day 2 of the GMC hearing.   Bronwen attempted to reveal the mortality rate for truncus arteriosus, but was prevented from so doing by the GMC.  Not once during the GMC hearing were Mr Wisheart’s results for truncus arteriosus revealed.  I wrote to the GMC saying that if these figures were not produced then the charges re Ian would fail.  Inevitably, on the 29th May 1998, the GMC announced that the charges re Ian were not proven.  I stood up in the Public Gallery and demanded to know why Mr Wisheart’s mortality figures for truncus arteriosus had not been produced – the only reply I received from the GMC was to be removed by the police.

On the 27th October 1998 BBC Newsnight revealed that Mr Wisheart had performed 11 truncus arteriosus operations with nine “early” deaths prior to Ian’s operation.  For some time thereafter we received threatening letters from the NHS Litigation’s solicitors making unsubstantiated claims that we had broken the gagging order imposed when we won our pre-action discovery hearing and claiming that we were the source of BBC Newsnight’s information.  Incidentally BBC Newsnight also revealed that Wisheart’s results for the TAPVD procedure, an operation the GMC had not considered, were appalling.

On the 5th December 1998 the British Medical Journal published a letter from me wherein I drew the readers’ attention to the BBC Newsnight figures (I was under a ‘gagging order’ so could not directly refer to facts obtained from our litigation).  I pointed out that statistically, reconstructing the methodology used at the GMC, this resulted in an “optimistic” mortality rate for Mr Wisheart greater than the “pessimistic” rate derived from the figures for 1991 in the Society of Cardiac and Thoracic Surgeons’ voluntary audit (the United Kingdom Cardiac Surgical Register); both estimates were based on a 95% confidence interval. The GMC had accepted that 1991 is the year in which the figures from this register would have been available to Mr Wisheart when our son was considered for surgery in 1993.   These 1991 figures give a mortality of 25%. Excluding Mr Wisheart’s results reduces this percentage substantially. If Wisheart is excluded the 25% observed mortality drops to 16.7% (four deaths in twenty four operations from seven deaths in twenty eight operations).  It is quite amazing that a single surgeon could affect the UK CSR figures to such an extent.

I also pointed out that mortality in the United States and Australia was significantly lower than in the United Kingdom. The University of California, for instance, had no early deaths in 22 operations between 1986 and 1990 for this condition and that Mr Brawn (the expert at the GMC Hearing) was the co-author of a paper revealing that between mid-1979 and December 1983, 23 patients with truncus arteriosus were operated on in Melbourne. Three patients died; two of these were babies under 1 month and severely acidotic and that these results were obtained a full decade before Ian underwent surgery.

Liability Admitted

Some two weeks later we received a letter dated the 22nd December 1998 admitting full liability.  The letter stated:-

“The Trust admits that it breached its duty to Ian Stewart in that it failed to provide accurate information to his parents regarding the risk of brain damage associated with the surgical repair of his congenital heart defect.  It is accepted that his parents may have obtained a second opinion from another unit had they been advised of the correct risks of brain damage and that they may have elected to have had the surgery carried out elsewhere and as a consequence Ian may not have sustained brain damage.”

Interestingly the letter admits that false representations had been made regarding the risk of brain damage, not mortality.   This seems a clear acknowledgement that one, if not both, of the survivors suffered brain damage.

Our belief that the two survivors suffered brain damage was added to by the way our many requests seeking clarification of the status of the two survivors, that our pre-action discovery court order entitled us to, were never clarified.

Finally, in a letter to our Solicitors dated the 13th February 1997, Doctor Bolsin referred to Francesca Graves and the brain damage she suffered.  He says:-

“I have personally searched in the basement of the BRI for the chart and it is possible to find the case immediately before Francesca and the case immediately after but not her record; very strange.”

We know that of the 11 truncus arteriosus cases prior to Ian, 9 died and one if not both of the survivors suffered brain damage.  We also know from Dhasmama’s logbook that prior to Wisheart starting the truncus arteriosus operations, that Dhasmana had done five such ops.  The first 4 died and the last, Sophie Plackett, suffered severe brain damage.

I had naively thought that the GMC was a whitewash, I was to learn that compared to the Public Inquiry they were rank amateurs.

The Public Inquiry

After our experience with the GMC, when the Public Inquiry began our barrister at that time requested that Ian be allowed representation.  We had had enough of these public bodies playing their deceitful games by controlling just what was asked and what was revealed.  We therefore sought representation for Ian but it was not granted – in fact we never received a formal response to this.  We felt completely side-lined by the public inquiry and apart from publicly demonstrating on a few occasions about the whitewash they were conducting, plus writing to them on numerous occasions voicing concerns, which they very professionally fobbed off, we had no input or power to affect what they did.

I could write about why the PI was a whitewash for weeks, but for brevity’s sake I shall restrict myself to the following five examples.

Example 1

I believe that Dr Schutt, the paediatric neurologist at the BCH, was never called, nor were his notes ever examined to see how many children had suffered brain damage.  Dr Schutt is the first person any brain damaged child would be referred to, as was the case for our son Ian.  One would expect his notes to provide a prime source of information regarding the incidence of brain damage amongst the survivors, yet I believe they were never examined, nor was he asked to provide evidence as to how many cases of brain damage he diagnosed following heart surgery.

The impression I got when he examined Ian was that it was all quite routine and did not surprise him in the least that Ian had emerged brain damaged from surgery.

Example 2: Length of Operation & Incidence of Brain Damage

During the GMC Inquiry, it became obvious that numerous doctors called to provide evidence had grave concerns regarding the length of the operations.

On day 7, Dr Bolsin of the GMC hearing when questioned by the committee said that the surgery was slow and that they had long bypass and cross-clamp times.  On day 12, Dr Ian Davies (anaesthetist at the BRI) said that the length of the operations, morbidity and mortality seemed excessive.  On the same day Dr Prynn, another anaesthetist, said that the cases took longer in Bristol and that the bypass and cross-clamp times were high.  On day 13, Nicholson, a perfusionist at the BRI, said that the operations took longer at the BRI – up to twice as long as at Guys.  Later that day another perfusionist, Mr Downes, said complex surgery took much longer than he was used to – up to twice as long.  On day 16, Dr Baskett, an anaesthetist at the BRI, said he was concerned at the bypass and cross-clamp times for both paediatric and adult patients.  Professor Angellini said, ‘complications are a well known fact to be enhanced by prolonged operations’.

Mr Pawade said that the risk of brain damage is 1 in 1000 and that fate of the child is decided in theatre – it is a race against time.  Professor Angelini also stated that his belief that complicated paediatric surgery should cease was not based solely on Bolsin’s audit which as far as he was concerned was, “Just the final piece of the jigsaw.”  He went on to explain:-

“My opinion was the result of what I was seeing everyday of the week in intensive care.   At audit there was almost inevitably a dead child or a child with complications.”  And, “Mr Wisheart was a very influential individual.  There was apprehension about what it would mean for one’s future career.”

On day 19, Mr Brawn the cardiac surgeon from Birmingham and expert giving evidence at the inquiry said that if circulatory arrest exceeds 40 – 50 minutes then the risk of brain damage increases. On day 20, Mr  Brawn went on to say that long periods on bypass or going back on it reflects lack of expertise.

The textbook on cardiac surgery by Kirklin and Barrett-Boyes which was frequently referred to by the GMC contains a section, together with a diagram, showing clearly how excessive times on bypass are linked to morbidity.

Then there is the 1995 Great Ormond Street Hospital study (Incidence of neurological complications of surgery for congenital heart disease by P Fallon, JM Aparicio, MJ Elliot and FJ Kirkham) which says that patients with adverse neurological events had a significantly longer mean cardiopulmonary bypass time than normal survivors (113 v 93 minutes; p<0.05), as did patients who subsequently died (199 v 93 minutes; p<0.001).

Finally, an audit performed by Dr Bolsin, which we obtained during our litigation, provides bypass times for over a hundred of Mr Wisheart’s patients.  Over 60% of those patients had bypass times exceeding 113 minutes – my son Ian had a time in excess of 199 minutes.

The following statements were made in a letter from Doctor Bolsin to our Solicitors dated the 25th November 1996:-

  • “It was not possible for Mr Wisheart to have truthfully said that the possibility of brain damage occurring in a case of this sort was negligible.”
  • “I believe that the children (brain damaged) are more numerous than the dead children but have never been formally counted.”

I wrote to the Inquiry asking that they look into these excessive times and its effect on mortality and morbidity and for the number of children who survived, but were left brain damaged, be counted – they never were.

Example 3

On page 158, paragraph 13, of the Public Inquiry Report, it states, “The Inquiry heard no evidence of concerns about the quality of care in PCS in Bristol being raised with the Royal Colleges”.

At day 11 of the GMC hearing Professor Prys-Roberts (President of the Royal College of Anaesthetists from 1994 to 1997) said, “At the beginning of 1992, I felt I should, on his behalf (Bolsin’s), make a representation to the Chief Executive of the Trust (Roylance), as it was then, simply to draw attention to the fact that matters were probably considerably worse than had been brought to his attention previously.   I think the  phrase I used was that one could not sweep this matter under the carpet anymore, and that there was sufficient concern from Consultant Anaesthetists within the Trust and Consultant Anaesthetists from outside the Trust … that I felt that as the Chief Executive, he should have done something about it.”.

In October 1991 Professor John Norman of the Department of Anaesthesia, University of Southampton, wrote to Professor Prys-Roberts saying that he had been approached by young Anaesthetists from the BRI with their concerns, and offering help through his colleague Doctor Thomas Abbott.   Professor Prys-Roberts discussed this with Doctor Baskett, as a Senior Cardiac Anaesthetist, and thought Doctor Baskett had followed up this offer.    Professor Prys-Roberts told the Inquiry that all the Cardiac Anaesthetists had expressed concern about paediatric cardiac surgery at some stage

Professor Prys-Roberts, council member and later President of the Royal College of Anaesthetists, was therefore obviously well aware of the concerns about the BRI.

Royal College of Surgeons

On the 15th July 1992, Doctor John Zorab (the Medical Director and Director of Anaesthetics at Bristol’s Frenchay Hospital; President of the Society of Anaesthetists of the South West Region in 1990–1991 and later President of the World Federation of Societies of Anaesthesiology) wrote to Sir Terence English, President of The Royal College of Surgeons. Doctor Zorab had served on the Council of The Royal College of Surgeons when Sir Terence English was a Council member so they personally knew one another.  This letter was written 14 months prior to Ian’s operation.

The letter says:-

Sometime last autumn, I made one or two efforts to get to see you in order to discuss the delicate and serious problem of mortality and morbidity following paediatric cardiac surgery in Bristol.

It also says:-

Great anxieties were being expressed by some of my colleagues at The Royal Infirmary.

It enclosed a copy of the “Private Eye” article and went on to say:-

Matters have come to a head once again and the enclosed piece from “Private Eye”, whilst possibly having some inaccuracies, quotes some statistics which have been confirmed elsewhere.

And

There is a widespread feeling that the situation is well recognised but being ignored – possibly because no-one knows how to tackle it.

The “Private Eye” article enclosed is the one dated the 3rd July 1992, which Sir Terence English on day 18 of the public Inquiry acknowledges seeing.   Amongst other things, it says the following:-

Mrs Bottomley claims that whistle blowing through the correct channels will get results.  Staff at the United Bristol Healthcare Trust have been whistling about the dismal mortality statistics in the Paediatric Cardiac Unit since 1988 (Eye 793) and while UBHT’s Chief Executive, John Roylance, The Royal College of Surgeons and Duncan Nicol, Chief Executive of the NHS Management Executive, are all well aware of the problem they seem more concerned with silencing the blowers...Sadly, Consultant Cardiologists at the Bristol Children’s Hospital continue to refer patients to their surgeons to support the local unit.   As a recently retired and very eminent Cardiac Surgeon in Southampton says, “Everyone knows about Bristol”.

At the public Inquiry (day 18) Sir Terence English agreed that the recently retired Cardiac Surgeon referred to had to be Sir Keith Ross, whom he knew well.   Sir Terence English said he did not contact Sir Keith Ross concerning the “Private Eye” article as “I took it (“Private Eye’s” article) at face value and felt I needed to act on Doctor Zorab’s letter pretty quickly”.

As we shall see later, even though Sir Keith Ross is quoted as having said “Everyone knew about Bristol”, he was to play a part in the telephone discussions with Professor David Hamilton prior to the SRSAG meeting at the end of July.   Sir Keith Ross was also a member of the Working Party set up by The Department of Health and given that “Everyone knew about Bristol”, it is incredible that nothing was done about it in 1992.

At the time of receiving Doctor Zorab’s letter, Sir Terence English was about to go away on holiday and his tenure of the office of President of The Royal College of Surgeons had passed to Professor Norman Browse on the 8th July 1992.   On receiving Doctor John Zorab’s letter, Sir Terence English reviewed the Working Party’s figures and report which had been sent to The Department of Health on the 2nd July 1992.  He then spoke to Professor David Hamilton, the Chairman of the Working Party on 23rd and 24th July when they discussed the problem of the high mortality statistics from Bristol.  According to Sir Terence English’s hand written notes (public Inquiry day 18, page153) David Hamilton says he had “heard figures were pretty bad down there (BRI) and “They had to chase Bristol for them.”  He then goes on to say that they discussed specific mortality rates, which Professor Hamilton has access to.  He says that the Fallot’s mortality was high and that the total atrial ventricular canal was high too at 54%.

Zorab’s letter had originally in fact gone to Professor Browse who had sought Sir Terence English’s advice on how to deal with it.  Sir Terence English’s view was that Bristol should be de-designated and with Professor David Hamilton’s agreement he spoke to Norman Halliday, the Senior Medical Officer of the Department of Health responsible for cardiac services and Medial Secretary to the SRSAG and it was agreed that Doctor Halliday would inform the SRSAG meeting on Tuesday the 28th July 1992 that The Royal College of Surgeons and it’s Working Party did not support the continued designation of Bristol as a supra-regional centre.

Sir Terence English replied to Professor Norman Browse (President of the Royal College of Surgeons) on, per the public Inquiry about the 25th July 1992.   The second and third paragraphs paragraph read:-

“Although I was aware that Bristol was not one of the best paediatric cardiac surgical centres, I had not appreciated the situation was as serious as described by John Zorab…I have discussed the matter with Professor David Hamilton from Edinburgh, who was Chairman of the recent RCS report to the Supra-Regional Services Advisory Group on the future policy with regard to the designation of neo-natal and infant cardiac surgery.  In this report, which is to be considered by the Supra-Regional Services Advisory Group on the 28th July, Bristol was included as one of the centres for designation.  However, it is clear from the review of table 1 in the report that their mortality statistics, both for the infant age group and the older age group, is worse than any other centre.  David Hamilton agrees that sufficient attention was not paid to this by his Working Party.”

Sir Terence English then replied to Doctor Zorab, copying in Browse (President of Royal College of Surgeons), in a letter dated the 27th July 1992, saying:-

I shall make a full response when I return from holiday in mid August, but suffice it to say at this stage that Bristol is not included in the Paediatric Cardiac Surgical Unit recommended by The Royal College of Surgeons for continued designation for supra-regional funding.   The Working Party report will be considered by the Supra-Regional Services Advisory Group on the 28th July.   I shall be informed of the result of this following my return and shall be in contact with you again then.  In the meantime I should be grateful if you would keep this information confidential.

From the Public Inquiry (day 18, page 139) there is no record that Sir Terence English ever wrote to Doctor Zorab again.

However, on Sir Terence English’s return from holiday on the 16th August he found that Professor David Hamilton had, in his absence, spoken to Sir Keith Ross who had also been a member of the Working Party.  This conversation took place on the 27th July 1992.  Together, Professor David Hamilton and Sir Keith Ross, in consultation with the other members of his Working Party,  decided to reverse the decision Sir Terence English had agreed with Professor David Hamilton on the 23rd and 24th July, namely the recommendation to de-designate Bristol.  Sir Keith Ross then rang Doctor Halliday on the Monday and informed him of the reversal of this decision.

Professor David Hamilton then wrote to Sir Terence English by letter dated the 3rd August 1992 in which he says that one of the reasons for the reversal of the decision to de-designate was that there was;

A further feeling that the de-designation of one of the units would probably leak out in the course of time.

In summary it is clear that the Royal College of Surgeons plus numerous high powered doctors (Browse, Halliday, English, Hamilton, Ross, Hunter, Stark and Zorab) were fully aware of the BRI concerns.    They were worried that if Bristol were de-designated it would “probably leak out”.  Does the suggestion that the “mortality figures of specific units” could be “reconsidered” suggest that they considered deliberately doctoring the BRI’s mortality figures?  There was considerable political manoeuvring in the course of numerous telephone conversations about whether or not to recommend de-designation of Bristol and whether to invite the Advisory Group to ask the Working Party to reconsider its recommendations.  The Administrative Secretary to the SRSAG was Steve Owen and at day 12 of the Public Inquiry he was asked:-

From what you are saying, the expectation of the SRSAG would be that if they de-designated the service, the patients would go elsewhere?

Owen’s answer was “Yes, certainly, yes.

These events are scandalous and constitute an outrageous disregard by servants of the government ultimately of Ian’s rights as a patient.   It is blindingly obvious that the Royal College of Surgeons had been made aware that Bristol had serious problems.  That the Public Inquiry can conclude that they “heard no evidence of concerns about the quality of care in PCS in Bristol being raised with the Royal Colleges” is a disgraceful untruth.

Example 4: Senning Operation

Yet another example of Wisheart’s and the referring cardiologists’ complete disregard for the lives and welfare of their patients is the fact that Wisheart performed the Senning operations long after it was known to have been superseded by the arterial switch operation.

At the GMC hearing, Doctor Shinebourne, who was the expert Cardiologist for the Defence, said:-

In 1990, I doubt if there would be any paediatric Cardiologist or Paediatric Cardiac Surgeon … who believed other than that the arterial switch was the best operation … for transposition of the great arteries.  By that time there would be a concern about undertaking a … Senning procedure ….  Indeed one could see an action against the surgeon.

According to a BBC report dated the 24th April 1999 the Senning procedure was replaced by the arterial switch because the Senning procedure though prolonging life, led either to an early death or to the need for a heart transplant.

At the GMC Inquiry they wondered what happened to the children who needed the ‘switch’ operation after the anaesthetists at the BRI refused to anaesthetise any more children for this operation due to the excessive mortality rate.  Wisheart’s log provides the answer.  Rather than refer the children to a centre that could perform the switch operation, he performed the Senning procedure.

The following statements were made in a letter from Doctor Bolsin to our Solicitors dated the 25th November 1996:-

Interestingly the brain was not the only organ to suffer serious damage at the hands of these surgeons.  Mr Ash Pawade and his Cardiac Anaesthetists (Doctor Andy Wolf and Doctor Tim Murphy) are only now discovering children in such severe heart failure that the only treatment available for them is heart transplantation or premature death.  These children are the survivors of operations that should have been curative and left them with normal lives and life expectancy.  The children are already dying and may never be counted in the dreadful legacy that the Paediatric Cardiac Surgical Unit at the BRI is leaving behind.

Why did the Public Inquiry not look into this?  Why did the Public Inquiry not look into the ultimate fate of these children who were counted as ‘successes’ because they survived an out-of-date operation that left them with the prospect of an early death or a heart/lung transplant?

Example 5: Consent & Learning Curve

Before considering how we were lied to regarding the true risks of heart surgery at Bristol and thereby fraudulently induced into consenting to a heart operation for Ian, I would first like to consider the duties of a doctor.

The GMC’s announcement of findings of fact made on the 18th June 1988 stated:-

“A parent placing a child in a doctor’s care must have confidence that the doctor will put the child’s best interests before any other.  It is hard to imagine a situation in which trust is more essential.”

From the NHS Management Executive Handbook (1991) – guide to consent for examination or treatment.

“Patients are entitled to receive sufficient information in a way that they can understand about the proposed treatment, the possible alternatives and any substantial risks so that they can make a balanced judgement.  Patients must be allowed to decide whether they will agree to the treatment and they may refuse treatment or withdraw consent to treatment at any time.”

The GMC Charge Sheet – this makes it clear that information given to patients must:-

(a)                     Accurately reflect the surgeon’s own experience.

(b)                     Give adequate information about the risks of morbidity.

(c)                    Not mislead as to the risks of mortality/morbidity.

(d)                     Not deny information about the risks of surgery on which the parents can make a decision as to whether or not they were agreeable to that surgeon performing that operation in that unit.

When we asked Mr Wisheart (and to a greater or lesser extent the cardiologists Joffe and Jordan and the anaesthetist Dr Bolsin) they should have told us the following regarding the risk of surgery for Ian in their hands.

Nine of the eleven patients I have operated on for this condition have died.  Ian thus has an 18% chance of surviving and if he does it is highly probable he will be left severely brain damaged.  The cardiologists are aware that I have never specifically trained for this procedure and that I am still on a ‘learning curve’, but I am hoping that with a bit more practice on guinea pigs like your Ian I may finally learn how to do this operation successfully.  Incidentally there are centres in England where this operation is being carried out very successfully, but I do not intend going there to be trained.   My colleagues at the BRI have been raising concerns about high mortality rates since the 1980s for less complex operations than this one. You may also have read about my unit in ‘Private Eye’ a year ago.  There were a couple of articles which lampooned the unit and referred to it as “The killing Fields”.  Well, since then a troublesome colleague of mine, Dr Bolsin, has produced hard data which confirms the high mortality rates. In fact my colleague Dr John Zorab, Director of Anaesthesia at the Frenchay Hospital in Bristol was so concerned that he raised the issue with Sir English in July 1992 who was then President of the Royal College of Surgeons.  He in turn raised his concerns with the Department of Health and actually recommended that my unit should be de-designated because of its disturbingly high mortality rates.  However, I still propose to do the operation anyway.

Why did the doctors not tell us this, why did they deceive us?  Quite simply I believe there were clear political and financial motives for those involved both for the Trust and for the individuals concerned personally.

The surgeon with the highest mortality rate, James Wisheart, was also the most senior and became appointed to positions from which it became very difficult for subordinates to question his practice. If the unit’s abysmal incompetence had been exposed,  then not only would the BRI have ceased to receive it’s supra-regional funding worth £1 million per year but also Wisheart’s personal status as an eminent surgeon would have been destroyed.

At the public inquiry Doctor Bolsin said that patients were sacrificed to keep government funding. He believed the BRI’s wish to keep it’s designation as a specialist heart facility was the main reason for the failure to act over his concerns about poor outcomes.    Telling of a conversation with another Consultant Anaesthetist, Doctor Monk, Bolsin said:-

“ The analogy that was used was of a train where occasional passengers were falling off and the train had to keep moving in order to attract funding. My impression of this unit was that the commitment of staff was to keep doing the things they felt were important to designation irrespective of risks to patients.”

On the 12th May 1994 Professor Vann Jones and Professor Angelini wrote to Peter Durie, Chairman of the UBHT, and stated:-

As you know Gianni Angelini has been to see me at your behest to discuss the problems that we have with paediatric cardiac surgery.  I am sure you are well familiar with the history of this but it has run along in a rather half baked fashion certainly for all the time that I have been here. … however, our present problem is that we have good units on our doorstep, namely in Southampton and in Cardiff and if paediatric cardiac surgery is to survive in Bristol, the surgical side certainly needs a very major shake up.

It is clear from this that what concerned the UBHT was not patient welfare but rather the worry that they would lose their Paediatric Cardiac Unit.  Further on in the same letter, he says that unless something is done:-

Paediatric surgery in Bristol is going to fold and shortly after that paediatric cardiology will go with it.

There is no reference to further children dying or suffering profound brain damage.  Doctor Bolsin gave an interview on Radio 4 on the 9th October 2001 in which he says that he became aware of problems on his very first day – the operation took far too long.    He also said that as the BRI couldn’t do operations on the under 1’s well,  a decision was taken to delay the operations for as long as possible until the age of 11 months so that the child would still be under 1, which was important for funding.  He agreed that children were sacrificed on the altars of consultant’s careers.  He says that their jobs were interesting and rewarding and Bristol was a pleasant place to live and they did not want to jeopardise that.  He said that blaming Wisheart was “like trying to impeach the President.”   He again mentioned the Director Anaesthesia’s analogy of a train where the doors didn’t work and passengers were falling off, but that if they stopped to fix them they might not get the train going again.  He said they were prepared to sacrifice children to keep this defective train running.  He finishes by saying he believes he is still condemned for having committed the unpardonable sin of shopping his colleagues and as a doctor, “you never shop your colleagues.”

Dr Jordan – referring cardiologist – is on record as saying,

If we sent significant numbers of under one’s, then we would lose the money from the supra regional scheme … there were wide implications such as the loss altogether of supra regional funding

Dr Joffe when asked why they did not mention that this was the first or second such operation being done at the unit?” replied, saying

I do not believe we would have necessarily started that operation if the advice had been given to parents in such a way that they knew we had no experience at all in neonates and would most likely not have wanted to do the operation...That in a sense you could say is almost unfair, to put that kind of comment to parents because they would feel, well, there is a lack of experience in this unit and therefore we would not wish to have our child operated on here.”

The above is a clear acknowledgement that parents were knowingly misled because if they had not been deceived, they would have gone elsewhere and the unit would have folded.

It wasn’t only the doctors who deceived us. On the 15th September 1993 Helen Stratton, the cardiac liaison nurse at BRI, showed us the ICU and gave us a video to help prepare us.  She was very reassuring telling us the BRI was excellent.  On the day of the operation it was Helen Stratton who accompanied Bronwen and Ian to the operating theatre.   Subsequently she is on record as saying:-

At times I wanted to say to parents lets go back upstairs and go back to your GP and discuss going somewhere else.  I thought I wanted to pick the baby up and run out but I would never have done that.

Bronwen and I received a substantial out of court settlement for our own individual lawsuits that were brought primarily based on the tort of fraud/deceit.  The evidence advanced was overwhelming, hence why the NHS litigation authority did not contest it in court.

Conclusion

How then, could Kennedy (Chairman of the PI) write in his foreword that what occurred was “a tragedy born of high hopes and ambitions, and peopled by dedicated hard-working people”?   It was clearly no such thing.  It was a tragedy resulting from incompetence, indifference to patient welfare and lies.

In his foreword Kennedy acknowledges that “too many children died”, where is the acknowledgement that too many children suffered brain damage or were deliberately given inappropriate operations that left them facing premature death or heart/lung transplants?

In his foreword Kennedy speaks of the care being blighted “by being split between two sites and … by inadequate facilities”.   Why then was Mr Pawade able to say on day 9 of the GMC hearing that,

when I came here first …. I quoted my Melbourne figures because I believe that with present technology, if those results are being achieved in one place they could be achieved in another place and so far it has proven true.

Mr Pawade then stated that he had conducted six hundred heart operations, the initial 88 being at the same split site Wisheart had used with only one death, at the Paediatric Cardiac Unit at the BRI since taking over on the 1st May 1995 and that there had been roughly twelve to fifteen deaths (a mortality rate of 2-2.5%).  He then stated that no child had suffered brain damage. Further, he also stated that no child on whom he had operated had suffered brain damage during his entire career.   He stated that a textbook figure as to the risk of brain damage was in the region of one in one thousand.   On the very day that Pawade started at the BRI, Mr Wisheart performed his last operation on an 18 month old child, Andrew Peacock, who suffered catastrophic brain damage and subsequently died in hospital.

Clearly, it was not the split-site that blighted the care the children received.  It was the incompetent surgeons and the cardiologists who though knowing of their appalling record, continued to supply them with fresh guinea-pigs who were responsible for the ‘blighted care’.

In his foreword Kennedy speaks of the importance of lessons being learned to prevent such a tragedy from re-occurring.  This, coming from Kennedy, really is quite a sick joke.   Where is the lesson to be learnt from the fact that the Royal Colleges knew, yet did not act when the report falsely concludes that they “heard no evidence of concerns about the quality of care in PCS in Bristol being raised with the Royal Colleges”.

I believe the following document recording a telephone conversation with Doctor Peter Doyle of The Department of Health stating that there is a need for the Trust to consider how to minimise the legal consequences of affected families suing it, that goes onto state that:-

There is an increasing number of parliamentary questions.  These questions are presently inaccurate but should they become more probing The Department of Health may have to resort to a public inquiry in order to deflect such political difficulties.

That Doctor Doyle described the De Laval/Hunter inquiry as being “too quick and dirty to be effective” is most revealing.  To my mind it sums up the nexus for the Public Inquiry beautifully and why it so successfully carried out the whitewash that it did.

In Australia following the Public Inquiry into the Bundaberg medical scandal where the Base Hospital surgical director Mr Patel (also known as “Doctor Death”) was implicated in the deaths of up to 87 patients they recommended that he face criminal charges.  In June 2010, Patel was convicted of 3 counts of manslaughter and one case of grievous bodily harm and sentenced to seven years in jail.  Had the Bristol PI been similarly genuine, rather than the whitewash it was, one would have expected similar charges to have been recommended for quite a number of the doctors involved.   Had this happened, lessons most certainly would have been learnt.

However in England, with its dubious record on Public Inquiries – one only has to think of the Hutton Inquiry and the way the Independent’s front cover was all in white as a tribute to yet another magnificent whitewash – the BRI PI is probably nothing new.  No wonder Mr Kennedy received his knighthood a year after conducting such a magnificent whitewash.

Bristol Heart Children Action Group

Other parents, notably Michaela Willis and Maria Shortis, had started the Bristol Heart Children Action Group (BHCAG).  They’d done much admirable early work and I’d attended some of the meetings when the formation of this group was being considered.

I was not invited to the meeting where they formed the BHCAG group and set themselves up as its management. I felt this group lost its way and finally became little more than a convenient rubber stamp for the Public Inquiry’s whitewash.  On the day I was removed by the police from the GMC proceedings for standing up and asking why Mr Wisheart’s mortality results for truncus arteriosus had not been revealed, I later watched this parents’ group emerge and thank the GMC for all that they had done.  The management of this group were parents whose children had died and I do not believe they had any real interest in brain damage.  The impression I got was that the Public Inquiry was fairly happy to deal with mortality and better still body parts, but that brain damage – given the potentially huge compensation sums involved – was strictly off the table.

I’d received a letter from a solicitor representing this group telling me not to contact any of the members of this group.  This followed a letter with an attached petition for criminal charges against the surgeons, cardiologists, etc that I’d circulated to the members.   I felt it was warranted, but received zero support.  Pursuing it on my own seemed futile.   It reached the unfortunate stage where I was so annoyed that I told Michaela Willis that the PI would not be able to get away with what they were doing if only the parents would stand up and condemn them for the whitewash they were conducting.  At the end of the heated conversation I told her that ‘her son would be turning in his grave’.  Naturally Mrs Willis was very upset by this remark.

At this point I realised I was isolated and powerless, the PI had won, and it was pointless saying hurtful things to Michaela Willis.

I then re-examined our priorities as a family and decided to largely ignore the PI.  They’d beaten me, and it was best to concentrate on winning our own lawsuits (Bron’s and mine) and finalising the quantum claim for Ian and just surviving as a family.

I wrote to Mr Whitehurst the solicitor to the Public Inquiry on the 29th January 1999, saying:-

You also say you are not aware of any specific questions to which you have not responded.  My letter dated the 18th January to Professor Kennedy has not been answered.  This letter has been the subject of innumerable e-mails to the Inquiry, none of which has elicited a response.  For you to claim that you are unaware of my queries is simply inconceivable.

My son suffered the most appalling harm.  Every day of our lives is a living nightmare.  It was needlessly done.  Your sister department, the Department of Health, was fully aware of it years before our son was considered for surgery, yet (surprise, surprise) there is no reference in your draft issues list to the audit that the DHSS commissioned.

Our health cannot stand your endless sanctimonious hypocrisy and lies.  There are not words strong enough to condemn this evil Inquiry.  We disassociate ourselves from it.  We would rather there had been no Inquiry rather than this shameful sham that you are conducting.

The Public Inquiry was indeed a shameful sham and it would have been better had there been no Inquiry rather than the one there was.

The Family

These brief reflections that have largely focused on the Bristol PI would be incomplete if I did not pay tribute to Ian’s remarkable mother and sisters.

It is one of life’s cruel ironies that Bronwen, who forsook all alcohol and religiously watched what she ate whilst pregnant, nevertheless bore a son with a serious congenital heart abnormality.  The reason for this probably lies in a nasty virus she contracted early in the pregnancy.  Bronwen’s ability to care for Ian and for our two daughters, no matter how tired and distraught she was, was amazing.  There were times when I had to put Ian down and walk away – my ears were literally buzzing from his screams and I felt that I would crack if I didn’t. Not once did Bronwen do this, not once did she not get up and go to him and try and comfort him – I do not have the words to express my admiration, it was well beyond anything I was capable of.

Ian’s eldest sister had her idyllic life shattered by what happened. It is a wonder she was not left traumatised by our fears and depression.  Yet she coped remarkably well, making pancakes for herself and getting ready for school all on her own because her parents were unable to give her the time and love that they once had. Witnessing what happened to Ian awoke an interest in medicine and she is now in her fourth year of study – patients will be lucky to have her as their doctor, she is remarkably caring and ethical.

I owe Michaela, Ian’s youngest sister, an apology for not having given her the time and love I know I should have.  I did my best, but I was just too tired and at times emotionally numb to have been the father that I wish I could have been. Bronwen and I were diagnosed as clinically depressed and suffering from PTSD due to what happened to Ian. Despite this, thanks to Bronwen and Jess, Michaela is a remarkably loving child who formed a very close bond with Ian – his death affected her greatly.    She is growing into a remarkable young lady with many of my wife’s attributes.

The Present

We lost Ian a few years ago.  His end was both terrible and prolonged.  He was in constant pain and the pain relief patches and medication became ineffective. Even his Australian paediatrician cried when he passed away – something I can’t imagine a British one doing.  Ian’s life was completely destroyed by the botched operation, the suffering that he endured due to it was truly appalling.

I still feel depressed and empty and at times I suffer intense flashes of anger for completely inappropriate reasons.   At times I suffer from excruciating back pain due to spondylolisthesis.  The constant lifting and carrying of Ian, per my GP, led to the stress fractures in my lower spine.

The knowledge of how we were lied to and deceived and how Ian never stood a chance is something I brood on.

The GMC hearing and especially the Public Inquiry greatly magnified the deep sense of anger that I feel for what was done to Ian.

Our lives were blown apart, yet Wisheart, the source of so much death and hurt was awarded an A Merit for ‘excellence’.  Financially the bonus was reputedly worth £38,995.00 per annum when it was awarded in 1994 and forms part of his pension.     Whilst Wisheart received the bonus, Dr Bolsin felt obliged to leave the country.

Those receiving these awards (Sunday Times – 18th January 1998) are first recommended by colleagues and hospital managers.  A regional committee including senior medical specialists in the field, then examines the application.  Finally, they are approved by a national thirty strong committee including the Chief Executive of the NHS, Presidents of The Royal Colleges and British Medical Association representatives.  It is inconceivable that those responsible for this award were unaware of the concerns then surrounding his surgery.

It is sad to learn that Mr Pawade whose surgery was indeed excellent did not receive the same award – it sounds like nothing has changed.  Given the Public Inquiry’s whitewash it is however not in the least bit surprising.

 

JAMES STEWART

 

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5 Responses to The Bristol Files and the Untold Story of Brain Damage

  1. Daphne Havercroft says:

    James, thank you for making this public. As you say, the children who were left brain damaged, and their families have been overlooked.

    I hope that your story, together with all the others, will help to break the sick culture that allows these terrible things to happen in Britain’s health services.

    Edmund Burke, MP for Bristol 1774 – 1780 said “all that is necessary for the triumph of evil is for good men to do nothing”.

    How many health scandals does it take for the good women and men in Britain to join the whistleblowers and do something about it?

  2. Neil Douglas says:

    This is a sad and tragic indictment on the established British Medical Health System. The last time there was callous thinking by professionals on this scale, was by the belligered generals on the WWI battle fields of the Somme, Ypres, Verdun and Paschendale.
    What a gigantic and courageous, David v’d Goliath story this .
    It took one very brave family to stand up to the establishment and to fight with all they had for what is right and win against all odds.
    This is testament to the fact that truth will prevail over evil.

  3. Peter says:

    Truly horrific. A nightmare come true. And I had not realised how poor the PI was.
    Ian Kennedy clearly is a man without integrity.

  4. karen stothart says:

    A courageous and necessary story exposed. The Stewarts are a truely loving caring family that showed extreme strength, courage and belief in doing what it took to expose this medical cover up. We need more people like the Stewarts to keep our systems honest. Lets hope the Stewarts can recover and heal emotionally from this dreadful ordeal and find peace and happiness, which they truely deserve.

  5. sarah campbell says:

    my dear son son FRANCIS who is now nearly 21 had the miss fortune to go under heart surgery with Dr wish hert in 1992 at 11 months old he had the misfortune to encounter this so called expert in infuntile heart sugery which has now left my more than beautiful son inable to do any much things for hmself , one would hope of university and or many pleasant things for our children . But for my dear francis he has only the laughter of the day to grt him and us all by . as said Francis is becomming 21 soon but we and he live with a 18 month child mentaly we have heard from none of the staff, parents , or anyone ,

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