Rapid Responses to:

EDUCATION AND DEBATE: Edmund Hey, Iain Chalmers, Rod Griffiths, Terence E Stacey, and Joyce Struthers Investigating allegations of research misconduct: the vital need for due process • Commentary: Response from members of the Griffiths inquiry BMJ 2000; 321: 752 [Full text]

Rapid Responses: Submit a response to this article

Rapid Responses published:

Investigating allegations of research misconduct

Carl Henshall, Deborah Henshall   (25 September 2000)

BAPM welcomes Hey and Chalmers analysis of the Griffiths report

Andrew Wilkinson, Janet Rennie   (25 September 2000)

Credit where credit is due

Penny Mellor   (25 September 2000)

The vital need for honesty

Mark Struthers   (25 September 2000)

Speakers corner

John Hopkins   (25 September 2000)

The real scandal is your attack on parents.

Brian Morgan   (26 September 2000)

Trial by witch-hunt

G Wheatley   (26 September 2000)

Re: Trial by witch-hunt

Brian Morgan   (27 September 2000)

Okey dokey

John Hopkins   (28 September 2000)

The whole truth

David Southall   (28 September 2000)

Re: Re: Trial by witch-hunt

G Wheatley   (28 September 2000)

time to learn the lessons from Stoke

David Hall   (28 September 2000)

Children are being denied CNEP as a result of this campaign

David Southall   (28 September 2000)

Comment by Griffiths on the nurses in Stoke

Edmund Hey   (29 September 2000)

Re: time to START the Inquiries

Lisa Blakemore-Brown   (29 September 2000)

Not Okey dokey

Brian Morgan   (29 September 2000)

......and nothing but the truth so help me God

Penny Mellor   (29 September 2000)

Are children really being denied CNEP as a result of a campaign?

Brian Morgan   (29 September 2000)

The Griffiths Report - the worst outcome would be that it becomes increasingly difficult to do resea

Terence Stephenson   (29 September 2000)

Support for and experience of nurses undertaking the CNEP trial

Teresa Wright, Kate Lucking   (29 September 2000)

When you are in a hole, stop digging

John Hopkins   (30 September 2000)

Do such Medical Ostriches really want a Speaker’s Corner?

Peter Morrell   (30 September 2000)

Re: When you are in a hole, stop digging

Brian Morgan   (1 October 2000)

Re: The Griffiths Report - the worst outcome would be that it becomes increasingly difficult to do r

Penny Mellor   (2 October 2000)

Moving up the evolutionary ladder

John Hopkins   (2 October 2000)

Paranoid and Conspiracy-prone

G Wheatley   (2 October 2000)

View from Sarajevo

Armin Alagic   (2 October 2000)

Re: When you are in a hole, stop digging

Penny Mellor   (2 October 2000)

Re: Paranoid and Conspiracy-prone

Brian Morgan   (2 October 2000)

Some facts please.

Mike Planigale   (3 October 2000)

A journalists' ethics committee?

G Wheatley   (3 October 2000)

Re: Re: Paranoid and Conspiracy-prone

Mark Cotton   (3 October 2000)

Reconciliation and consent

John Hopkins   (3 October 2000)

Competence of the Griffiths Review

Ivor Rowlands   (3 October 2000)

Re: Some facts please.

Penny Mellor   (3 October 2000)

Re: Reconciliation and consent

Penny Mellor   (3 October 2000)

Re: Reconciliation and consent

Brian Morgan   (3 October 2000)

Re: Competence of the Griffiths Review

Brian Morgan   (4 October 2000)

Repulsive distortions and overreactions

Peter Morrell   (4 October 2000)

Fallacious arguments (continued).

Joseph Watine   (4 October 2000)

Wrong end of the stick?

Joe Kerr   (5 October 2000)

Calm that fevered brow

G Wheatley   (5 October 2000)

As A Parent

Gloria Brown   (5 October 2000)

Bullies on the web

John Hopkins   (5 October 2000)

Re: Calm that fevered brow

Penny Mellor   (7 October 2000)

Re: Bullies on the web

Gerard Foxley   (7 October 2000)

Re: Bullies on the web

Peter Morrell   (8 October 2000)

What is the rapid response for ?

John Hopkins   (8 October 2000)

So little value and respect for children

Charles Pragnell   (8 October 2000)

The Griffiths Inquiry into research in Stoke on Trent failed to use due process

Edmund Hey, Iain Chalmers   (9 October 2000)

Shouting at an empty room

John Hopkins   (9 October 2000)

Re: Bullies on the web

Ian Nesbitt   (9 October 2000)

Re: The Griffiths Inquiry into research in Stoke on Trent failed to use due process

Brian Morgan   (10 October 2000)

Re: Re: Reconciliation and consent

Mark Cotton   (11 October 2000)

Re: "Doctors -v- Journalists"

Paul Davison   (12 October 2000)

Re: Re: "Doctors -v- Journalists"

Brian Morgan   (12 October 2000)

Re: The Griffiths Inquiry into research in Stoke on Trent failed to use due process

Brian Morgan   (17 October 2000)

Re: Re: Re: "Doctors -v- Journalists"

Mark Cotton   (17 October 2000)

Re: Re: Re: Re: "Doctors -v- Journalists"

Brian Morgan   (19 October 2000)

Re: The whole truth

E Dunn   (20 October 2000)

Further errors in Griffiths Report

Martin Samuels   (3 November 2000)

Investigating allegations of research misconduct 25 September 2000
Carl Henshall, parents/carers/campaigners home, Deborah Henshall Send response to journal: Re: Investigating allegations of research misconduct	Hey and Chalmers' propaganda is bereft of factual accuracy and logic and is simply an attempt to discredit ourselves and the Griffiths review(1). Hey and Chalmers base their conclusions on limited evidence and have not approached any of the complainants in order to gain a balanced view. The authors are quick to discredit the Griffith's report(2) for not investigating or pursuing issues beyond their remit whilst they themselves are conducting a biased, blinkered review. Hey and Chalmers rely heavily on the testimony of Professor Southall and attempt to give this enormous credibility. However, there are blatant inconsistencies in his testimony as we shall highlight. Furthermore, in a television interview for Channel 4 news Professor Southall categorically stated that no randomised trial into the use of CNEP for bronchiolitis had been conducted yet this article refers to such a study by this research team. This casts doubt of the plausibility of all of Professor Southall's 'evidence'. We feel we do not need to argue points of fact with Hey and Chalmers through a medical journal as, unlike as inferred by the authors, all our allegations can and will be substantiated by records written by the researchers themselves. This has been widely acknowledged by various bodies who have or are investigating issues around the CNEP study(3). Hey and Chalmers state the trial design was "of high quality". If this is fact then we despair of research in this country. However, we know that this statement is grossly inaccurate. If Hey and Chalmers had bothered to scrutinise the study design in depth as we have, they would be left in little doubt that this was indeed a study designed to fail. The poor science of the CNEP experiments meant that it was impossible to procure any meaningful conclusion or indicators of benefit or detriment for the technique. It is also wrong to conclude that parents were not subjected to the enthusiasm of the researcher simply because consent was only obtained by a member of the eleven authors of the report on four occasions. The Griffiths' report clearly states that all the parents interviewed described the CNEP technique as a "kinder, gentler treatment", the same words as used by the researchers when describing the technique to the review team. It is obvious from this that the researchers had given the staff a set dialogue to use when parents were being approached. Therefore, the parents were "subjected to the enthusiasm of the researcher" albeit by proxy. The scoring system has been proven to allow bias in favour of CNEP over IPPV. It was possible for a baby who died on CNEP to score higher than it's matched pair on conventional treatment who survived intact. If this scoring system and the statistical approach were supposed to enable termination of the trial if the subjects suffered harm why did the study continue after the 10th infant in the study was strangled to death by the neck seal ? Why did it continue after children suffered from hypothermia due to an inadequate neck seal or hyperthermia due to over zealous correction of hypothermia ? In any event it has been and will be again proven that the trial did not run as it was designed to. Protocols were ignored, aims were shifted and criteria overlooked all of which rendered the study results invalid. The "Pediatrics" paper(3) should, in fact, be retracted. The secondary outcome measures that were designed as indicators of technical, nursing and adverse reaction problems associated with the newly devised equipment did not allow for long term neurological follow up, despite intercranial bleeding and cerebral hypertension and ischaemia being well documented known complications of negative pressure ventilators. Indeed the only head monitoring claimed as proof, supposedly in pilot work on CNEP, to show no detriment from venous occlusion, upper airway obstruction, neck excoriations and subsequently fluctuations in cerebral blood flow was another experimental, unvalidated procedure Near Infra Red Spectroscopy(4). This technique has proven to be of no clinical use due to it's unreliability and problematic application. To make a point about the history of CNEP, if Hey and Chalmers had also bothered to do their homework when looking at the status of the research and the validity of the claims made by Professor Southall and his team, they would know that the so-called pilot work concerning the safety of the latex neck seal and whether it affected cerebral blood flow using the NIRS technique (devised at Keele University by Professor Peter Rolfe) was indeed not done until half way through the study published in the medical journal "Pediatrics" and in fact used children who were already part of the CNEP study(3,4). This suggests that the trial on premature neonates with Respiratory Distress Syndrome was carried out without the researchers knowledge of it's safety and efficacy. The researchers had provided an agreed "parental information sheet" to the ethics committee, to be given to all parents prior to them giving consent. This sheet stated that the new technique had been shown to be safe and effective. The study report publication(3) concludes that further study is warranted to determine the value and safety of CNEP in reducing the incidence of chronic lung disease of prematurity. This is coercion and fraudulent practice and renders any consent form, including those where parents are happy they were signing for research, invalid. Indeed there is no documentary evidence of either CNEP or CNEP + IPPV`s safety or efficacy. There are however plenty of reports and documentation to show the many adverse and catastrophic events causing extreme morbidity or mortality in the unfortunate infants who were exposed to the experimental ventilators.(3,5,6,). Hey and Chalmers refer to the way in which the Griffiths team seem to have relied on allegations of poor practice by an unstated number of parents whose children received care in the CNEP trial to reach their conclusions. This is an absurd statement and totally inaccurate. Professor Griffiths opened up the inquiry to take information from ANYONE with an interest from either direction. Southall et al had every opportunity to produce so-called documentary evidence to counter parents first hand knowledge of the allegations they were making.. They chose not to because they could not produce anything different or more authentic than the material already provided by those parents interviewed. Hey and Chalmers admit they have only seen photocopies of documentation and not originals because the Trust, who hold those documents, are obliged to abide by laws on patient confidentiality. The Professor and his colleagues have already been accused of altering medical records, falsifying results and producing consent forms without true signatures. (An allegation being investigated by the Police, GMC and looked at by the Griffiths review panel and subject to legal proceedings) How then does this scenario make this review any more credible or reliable? On the subject of whether or not there was any peer review of the CNEP issue, Hey and Chalmers State that Professor Southall sought advice from the National Perinatal Epidemiology Unit in 1990 and the MRC and National Heart and Chest Hospital research committee in March 1990. How is this peer review when the trial began in 1989(3) and the pilot work supposedly sometime before ? We are also confused over the questionnaires claimed to have been sent to all parents whose children took part in the study in Stoke who survived. The questionnaire given to ourselves (an identical sample copy of which appears in the Thesis produced by Dr. Joseph Raine for his M.D.(6)) is entitled 'Bonding Questionnaire' and asks parents how they bonded with their children given the constraints of neonatal intensive care techniques. Nowhere in this questionnaire is it inferred that CNEP was anything but standard practice nor does it ask about the consent process It is therefore surprising that some parents specifically chose to mention the consent process and eight people out of 137 stating they definitely gave consent is hardly proof that all parents were adequately informed and indeed is not proof that these parents were adequately informed. Were they told of the previous adverse incidents or told that there was no evidence of the safety or efficiency of CNEP ? Furthermore, the covering letter supposedly sent with these questionnaires states "The information from the questionnaires is confidential and will only be used for the purposes of the study." Has parental consent and ethics committee approval been obtained to use this information for this retrospective study ? We believe this questionnaire was devised some way into the study to answer concerns of the nursing staff who felt that the restrictive nature of access to the infants may well interfere in the bonding process. The concern of the nurses on this issue was portrayed in many ways during our child's confinement in the CNEP tank. We were constantly discouraged from handling or comforting our children because of the real danger of leaving a child with inadequate ventilatory support due to the loss of negative pressure when entering the chamber through the portholes. Again, no research has been conducted on the effect of opening a porthole on an infants cerebral circulation despite the researchers having concerns over this(6). This lack of opportunity was justified in the researchers eyes as it was said to be highly beneficial to promote minimal handling. This is ironic considering the nurses highlighted their own concern that transferring a sick infant into a CNEP chamber so soon after delivery and before they had adequate time to stabilise after initial handling compromised the rules on minimal handling(3,6). It could take up to 1 hour and at least 2 nurses to establish the infant in the CNEP chamber. Dr.Raines thesis on CNEP refers to one infant who died when he developed a pneumothorax during transfer and others that developed hypothermia and bradycardia. The issue of the consent forms is a fundamental part of the GMC investigation. Hey and Chalmers disagree with the review teams view that "it is not possible to be sure who completed some of the consent forms". Perhaps the review team concluded this because, like ourselves, they find it inconceivable that any parent would misspell their own name or produce a perfect signature at a time when they were unconscious due to the effects of morphine. We have already pointed out the irrelevance of the ECMO study to our complaint(7,8). If all this information that validates our allegations is thought to be factually inaccurate and misinformed then you should contact the authors of the publications from which they are taken i.e. Southall, Samuel's, Spencer, et al. The most crass and outrageous inference in this article is that CNEP could actually be beneficial from a neurological point of view. It has been proven that some of the children who scored maximum points for having no cranial ultrasound abnormalities had gross and irrefutable damage to their brains. In one case an independent post-mortem examination gave the cause of death for a child as Grade 4 PVH. The report of this post-mortem was, by their own admission, available to the researchers when assessing the score for this infant. Not only did this infant score maximum points for having no cranial ultrasound abnormalities the researchers actually gave him a bonus of 20 points, giving him double the maximum possible for this parameter. The retrospective audit being set up, as per the recommendations of the Griffiths review, will definitively answer the question of the true number of children neurologically compromised by the use of CNEP and Hey and Chalmers should not pre-empt this analysis with such an inept statement. This report cynically attempts to vilify parents who have a valid complaint about the treatment afforded their vulnerable children and undermine the extremely important and vital recommendations of the Griffiths report. Hey and Chalmers' attitude is typical of the outdated and perilous belief of maverick researchers who believe they have the right to attempt any technique on any person without properly procured consent or care for the well-being of the subject or that patients have an obligation to take part in research as some sort of redress for free NHS care. If this study was so conclusive and CNEP of such a great benefit to infants as Hey and Chalmers would have us believe, why is it no longer used anywhere in the country for the treatment of Respiratory Distress Syndrome in premature neonates ? Research is essential to the furtherance of medical knowledge and practice and one would expect honorable researchers to welcome the improvements to the research framework suggested by Professor Griffiths and his team. One must question the motives of Hey and Chalmers in producing such a fallacious report. Were they really reviewing the Griffiths report or simply trying to provide a defence for Professor Southall and the Medical Defence Union. It is irresponsible of the BMJ to publish this paper and will seriously damage its reputation. We fear the repercussions will be immense. Conflicting Interests - Parents of a child neurologically damaged by the CNEP trial. ______________________ References 1. Investigating allegations of research misconduct: the vital need for due process. Hey & Chalmers: BMJ Vol.321;Sept 2000 2. Report of the review into the research framework in North Staffordshire. Griffiths et al: NHS Executive. 3. The use of continuous negative extrathoracic pressure ventilation in neonatal respiratory distress syndrome. Samuels et al: Pediatrics 98 Vol 6 Dec. 1996 4. Effects of positive and negative pressure ventilation on cerebral blood volume of newborn infants. Palmer et al: Acta Paediatrica, 1995;54:132-139 5. Negative extrathoracic pressure in treatment of respiratory failure. Samuels & Southall: BMJ 1989;299: 1253-1257 6. Continuous Negative Extrathoracic pressure in the Neonatal Respiratory Distress Syndrome. MD Thesis Dr. J. Raine 1993 John Rowlands University Library, Manchester 7. Reactions of participants to the results of a randomised controlled trial Snowdon et al: BMJ Vol 317 July 1998 8. Re: Experience from ECMO trial may be relevant to the problems of parental recollection of consent C. Henshall: eBMJ www.bmj.com/cgi/eletters/320/7245/1285
BAPM welcomes Hey and Chalmers analysis of the Griffiths report 25 September 2000
Andrew Wilkinson, President and Hon Sec of British Association of Perinatal Medicine Oxford and King's, London, Janet Rennie Send response to journal: Re: BAPM welcomes Hey and Chalmers analysis of the Griffiths report	From: Professor Andrew Wilkinson, President of BAPM & Dr Janet Rennie, Honorary Secretary of BAPM RE: The Griffiths enquiry Dear Sir, 'Incompetent' would not be too harsh an adjective to describe the Griffiths Report, particularly considering that the authors of the report use equally strong language after their cursory indictment of the randomised controlled trial of continuous negative airway pressure (CNEP) in North Staffordshire in general and of Professor David Southall in particular. From the moment it was published many professionals and parents have suspected that the conclusions of the report were wrong. Now, as shown in the analysis published in today's BMJ by Hey and Chalmers, we have convincing evidence that the Inquiry team's report was indeed deeply flawed. Hey and Chalmers considered in detail documents which the inquiry team could have consulted but did not. Their assessment reveals an alarming degree of incompetence by the inquiry panel, which appears to have been content to rely on allegations made in oral evidence offered years after the events in question. The editor of the BMJ, Dr Richard Smith, acknowledges that his previous editorial was based on a false assumption that the enquiry had been well conducted. Hey and Chalmers have done patients, clinicians and researchers a great service in showing that what has been suspected by many of them is true. Following external scientific and ethical review the CNEP trial in Stoke was carried out to well established standards. Indeed in many ways it was ahead of its time, a fact reflected in its publication in the worlds leading paediatric journal. Neonatal research in the UK has always set high standards and has an excellent record of collaborative trials to evaluate and established more effective and safer treatments. As in all fields of medicine, good research is essential if we are to serve our patients well and the understanding and willing involvement of parents will always be required. The Griffiths panel failed to appreciate this, possibly because the distance of the panel members from the clinical arena clouded their interpretation of the facts. The response of the Griffiths panel members to the Hey and Chalmers paper ends with a statement that they consider their "job done" and will not take part in further debate. It is disingenuous of them in the extreme not to defend their report, considering the extent of the damage it has done, not just to the doctors and nurses in Stoke-on-Trent, but to all those caring for newborn babies and their parents. We trust that Hey and Chalmers painstaking analysis of this affair will set the record straight about the quality of the research and care in Stoke-on-Trent in the early1990s and re-establish confidence in the governance of UK neonatal research after the damage done by the Griffiths inquiry. andrew.wilkinson@paediatrics.ox.ac.uk janet.rennie@kcl.ac.uk www.bapm-London.org Competing interests In addition to their office in BAPM, the authors are practising clinical and research neonatologists
Credit where credit is due 25 September 2000
Penny Mellor, "self styled" Child Advocate Home Send response to journal: Re: Credit where credit is due	My first response when I read Chalmers and Hey's press release on Tuesday evening sitting in a Hotel bar, after a second day in Sunderland Magistrate's Court was to burst out laughing, I thought to myself is this the best they can do? My second thought was for the parents of the children who were either dead or brain injured, because I saw not a mention of how sorry the authors were that children had either died or had brain injuries, still this is about saving careers, I mean what are children compared to that? My next thought was this, how blatantly obvious all this is, in fact, after Marcovitch's totally inaccurate tirade of abuse in Diagnose and be Damned, which is still published in the BMJ uncorrected, what more could we expect! Well, we will see who has the final word, because lest you all forget, Hypoxia, CVS and the diagnosing of MSbP are still being investigated. The RCPCH MDU and the BMJ can continue in their mission to send life boats out to what is now Titanic, it will not make a blind bit of difference, because the evidence that I have, that has never seen the light of day as yet will make you all wish that you had kept quiet. Well you've pitched your cap in on David Southall's side, let's see how many of you will still be there when the truth begins to emerge. Thank you to Rod Griffith and his team and to North Staffordshire Hospital, for throughout the last few days and indeed during your Inquiries at least there has been recognition for the grief of parents. Competing Interests Campaigner against the use of the term MSbP Currently still submitting evidence to various inquiries into the work of David Southall. Submission of evidence to Griffith Inquiry Now Publish this ........ if you dare.
The vital need for honesty 25 September 2000
Mark Struthers, General Practitioner Leighton Buzzard, Bedfordshire Send response to journal: Re: The vital need for honesty	I am amazed to read the Chalmers and Hey attack on the Griffiths report. Is attack the only available form of defence? "Leaving aside the unanswered question as to whether some consent forms were forged ....." If forgery took place, how can it possibly be left aside, when this obviously has far-reaching implications as to how research is approved and monitored in the future. Fraud at any level in clinical research is scandalous. In the conduct of research, 'honesty and integrity' cannot be left aside if it is to have any validity. However well designed the trial, how can there be confidence in the outcome if these values are absent.?
Speakers corner 25 September 2000
John Hopkins, GP Darlington Send response to journal: Re: Speakers corner	Dear Dr Smith, This is probably none of my business, and I shall doubtless be told so, but there seem to be two distinct communities using this rapid response. There are those who use it to respond to articles in the BMJ and those who use it as a platform for their own views and concerns. Nothing wrong with either group but might it worthwhile considering a "Speakers Corner" where those who feel the need to get something off their chest can do so while allowing the rest of us to potter quietly through the fine print. John Hopkins
The real scandal is your attack on parents. 26 September 2000
Brian Morgan, Freelance Journalist Cardiff Send response to journal: Re: The real scandal is your attack on parents.	Before I begin my response, some of your readers (but perhaps not all) will be pleased to hear that the charge of conspiracy brought against me by Sunderland police last year in connection with the alleged abduction of a nine year old girl, on the eve of care proceedings, was thrown out in Sunderland magistrates court last week (1). Now that I have got that out of the way what I have to say about last week's further self immolation by doctors on the pyre of ramshackle reputations, with tinder from the splinters of self regulation, is this: Carl and Debbie Henshall's response is, from my personal knowledge of their case and the history of CNEP, a model of accuracy, and for them (and other parents of research subjects) to be the subject of an ill- informed attack such as appeared in the BMJ is the true scandal. The facts as they present them are unimpeachable - I shared some of their research - the lack of prior knowledge of the safety of the CNEP equipment being a prime example - the paper in Pediatrics carries what can only be described as a false claim to the contrary (2). I submitted my synopsis of uncovering this and other malpractices to the Griffiths Inquiry, and anyone who wishes to see what I wrote has only to ask - indeed I wholly stand by it and offer to make it available to be published in the BMJ. Let me turn to the paper cited twice in the BMJ as being available at www.baspcan.org.uk. Search as one might, it is just not there. This is not the first time that the BMJ has cited an unavailable article by a member or members of the North Staffs research team. An item cited in an article on CNEP the BMJ in 1989 as being 'in press' in Archives of Disease in Childhood is also not available (3). I always thought it was important that referenced articles should be available for reading, otherwise how can one verify claims? But this is clearly not necessary where medicine is concerned - 'don't confuse me with facts, my mind is made up'. In the case of the Baspcan article, there is a brief comment on the Baspcan website, where it claims there is a link between the CNEP parents and those campaigning on false allegations of MSBP. (4) Well, just like the magistrate in Sunderland actually said to the CPS about the spurious allegations being brought against me, 'so what', you might comment. They are after all campaigning about the same researchers - but it's more significant than that - by attempting to establish a link between the CNEP and MSBP campaigners the critics seek to sully the reputation of bereaved parents and those with brain damged children, quite disgracefully, by hinting at 'child abuse'. There is no link between the two groups - they have kept themselves quite separate - different strategies, different individuals. What really is sinister is that the word is being spread that CNEP campaigners are displaying MSBP like behaviour - so is this what is in the Baspcan report? We should be told. I respectfully submit that it is unethical to publish articles within which there are references that cannot be read. The BMJ should halt the practice and should insist on articles being withheld until such time as their source material is available, and when told this is not the case - withdraw articles already published. Brian Morgan Competing Interest - being a freelance journalist. References 1 Cleared journalist set to sue police, Sunderland Echo 23/9/00 http://195.172.106.37/news/story4.html 2 Samuels MP, Raine J, Wright T, Alexander JA, Lockyer K, Spencer SA, Brookfield DS, Modi N, Harvey D, Bose C, Southall DP. Continuous negative extrathoracic pressure in neonatal respiratory failure. Pediatrics 1996; 98: 1154-1160 3 Samuels MP, Southall DP. Negative extrathoracic pressure in neonatal respiratory failure in infants and young children. BMJ 1989; 299:1253-1257 4 http://www.baspcan.org.uk/news.htm
Trial by witch-hunt 26 September 2000
G Wheatley, GP Surrey Send response to journal: Re: Trial by witch-hunt	Congratulations to Hey & Chambers, for throwing some objectivity into the snake pit to which the investigation of the Stoke CNET trial now resembles. That an investigation was necessary is undeniable. There is the important issue of how consent was obtained for a number of the children involved. However, it is frankly amazing that Griffiths did not feel it necessary to make further inquiry, and simply accepted the account of witnesses hostile to David Southall. Griffiths in the commentary obviously does not feel it necessary to answer the specific and serious criticisms in Hey & Chambers' paper. Unfortunately, he gives the impression that he has no answer to them, or worse still, that he does not feel he has to answer them. The assertion that the views of parents revealed by survey were irrelevant as they didn't turn up at the inquiry is disingenious considering the often severely hostile and intimidating atmosphere. His lack of interest in any further comment is an unfortunate statement about an seemingly indefensible process. The impression Griffiths himself creates is of an inquiry with a chairman who was out of his depth, whose conclusions were decided in advance as being self-evident, and which was held simply as a ritual to scapegoat David Southall for the crime of not, ultimately, having a successful treatment. There are still questions as to how some individuals obtained consent, but unfortunately now there are even more questions about the witch-hunting frenzy that the investigation seems to have become. The sad truth is that the ultimate losers will be both research itself, and the ill children in the future who may be unable to benefit from the advances research might bring.
Re: Trial by witch-hunt 27 September 2000
Brian Morgan, Freelance Journalist Cardiff Send response to journal: Re: Re: Trial by witch-hunt	Dr Wheatley says Griffiths 'simply accepted the account of witnesses hostile to David Southall'. Well he might, in some cases, but as other electronic responses explain, many of the 'hostile' witnesses, as he describes them, took with them documentary evidence, much of which was written by Professor Southall himself. There is a suggestion, in what Dr Wheatley writes, that critics of Professor Southall cannot be relied upon to tell the truth, but of course the word of any doctor may be relied upon as truthful. This must be the case, because of course being honest and truthful is an absolute sine qua non of being a registered as a doctor - truthful - OK, not truthful - out. Let us take the Griffiths Report as source for an example of the 'truthfullness' or otherwise of one of its key witnesses. In the section devoted to the history of the introduction of Covert Video Surveillance Griffiths has this to say: “12.3.1 He used the technique of covert video surveillance (CVS) to assist in the identification of what was causing the child’s symptoms. When he was at the Brompton Hospital this was instigated by, and undertaken with full co-operation and support from, the Police and according to a protocol agreed by the local Kensington & Chelsea Area Child Protection Committee.” I checked this claim with the Royal Borough of Kensington and Chelsea in July 2000. They said: To Brian Morgan: Covert Video Surveillance Kensington and Chelsea Area Child Protection Committee (ACPC) is the group responsible for developing child protection policy locally and promoting good practice in accordance with relevant legislation and government guidance. It has representatives from Social Services, Health, the Metropolitan Police, Education, the Inner London Probation Service, the Independent and Voluntary Sectors. Minutes of Kensington and Chelsea ACPC meetings have been examined as far back as 1988 and no record has been found of any consideration of or agreement to the use of Covert Video Surveillance (CVS) as a tool for establishing whether family members were involved in causing deliberate harm to children. -Ends- I put this rebuttal of the entry in the report to Professor Griffiths who assured me that the claim was one made to him and to North Staffordshire Hospital by the witness concerned and it was accepted in good faith. I leave you to work out the identity of the witness and what this says about truthfullness. Brian Morgan
Okey dokey 28 September 2000
John Hopkins, GP Darlington Send response to journal: Re: Okey dokey	Dear Dr Smith, Apologies for getting into this maelstrom again but there is a place for those with a grievance to get justice and it is called at a Court of Law. Before the law, we are all equal, doctors receive no special favours, evidence is taken on oath and witnesses are subject to cross examination in public. I am not entirely sure what Morgan, Mellor and others are trying to prove, but if they believe they have been wronged then let them put their case before a Court in this country or in Europe and let us await judgement. In the meantime, like the Prime Minister, we have got the message ! John Hopkins
The whole truth 28 September 2000
David Southall, Professor of Paediatrics Keele University Send response to journal: Re: The whole truth	The various investigations currently being undertaken by the North Staffordshire Hospital Trust, by the General Medical Council and by the Police, into the allegations first made about the clinical staff in Stoke in April 1997 make many issues 'sub judice', as Professor Griffiths and his colleagues say in the commentary you published on September 23rd [1]. However, the inquiry that Professor Griffiths undertook is not itself 'sub judice', and comment on the way this was conducted seems legitimate. Griffiths et al say: "We took evidence from 60 people, some of whom also provided written material. There were repeated calls for everyone who had relevant material to come forward. We could do no more than ask every witness to provide material that they thought was relevant." The problem with this is that my colleagues and I were never told, except in very general terms, what was said to have been wrong with the conduct of the one neonatal trial on which the Panel focused nearly all its attention. Because of this we had no way of knowing what material might, or might not, be "relevant". Had we known, the panel would have been offered, eighteen months ago, the material that Hey and Chalmers refer to in their critique of the inquiry.[2]" The Panel make one further statement to which I would like to draw attention. They say "We are given to understand1 that by reference to the nursing record, the consent forms, and Professor Southall's own logs (which he did not provide to the panel) it is possible to work out who obtained consent and when they did so". Leaving aside the assertion that the logs are "mine" when they are, of course, part of the centrally preserved record of how the trial was conducted, this carefully phrased statement is - while technically true - deeply misleading. It leads the reader to believe that I would not let the panel have the log when they know perfectly well, because it is in the transcript of the interview I underwent on July 23 1999, that the Trust asked me not to give them the log.[3] Such half-truths can be very damaging. It is time the whole truth came out. David Southall Professor of Paediatrics, Stoke on Trent ST4 6RY davids@doctors.org.uk I must make it clear that I am writing this as an individual and that the contents of this letter are my responsibility and mine alone. 1. Hey E, Chalmers I Investigating allegations of research misconduct: the vital need for due process. BMJ 2000; 321: 752 2. Griffiths R, Stacey TE, Struthers J Commentary: Response from members of the Griffiths inquiry. BMJ 2000; 321: 752 3. Response to a Report of a review of the research framework in North Staffordshire Hospital NHS Trust (The Griffiths Report), released by the NHS Executive on May 8th 2000 www.baspcan.org.uk/news.htm
Re: Re: Trial by witch-hunt 28 September 2000
G Wheatley, GP Surrey Send response to journal: Re: Re: Re: Trial by witch-hunt	It is obvious that the account of any witness in an inquiry - medical or non-medical - should never be accepted without question. It is a fact of life that different people watching the same events can have widely different recollections, perspectives, points of view, and explanations - just think of the differing views of any random group of football spectators watching the same match (let alone the commentators, or the other team). Recollections differ - they should all be sought in a trustworthy investigation. Hey & Chambers provide evidence that in this case they weren't. The investigators' job is to weigh and balance the different accounts from all witnesses, representing all the points of view expressed, and then come to a best estimate of what actually went on. The unfortunate impression given by the inquiry chairman is that this is exactly what didn't happen - the truth appeared to have been decided in advance. There is no doubt that the CNEP trial was a disturbing setback - the proposed new treatment didn't work and there are legitimate questions over how consent was obtained in some cases. There are questions for the study's organisers about, for example, the training and supervision of the staff who were obtaining consent from parents. However, none of this justifies what appears to be a sustained character assassination of the senior researcher involved. The researchers aren't expecting immunity from investigation - but they deserve a fair investigation, and that is manifestly what they have not received. It was surprising to me that the old chestnut of covert video surveillance (of parents suspected of abusing their children) was dragged into view, presumably to try to discredit the senior researcher. Covert video surveillance is certainly not polite - it would be rude (and illegal) to organise it on your neighbours - but what it has revealed is not polite (or legal) either. One report of 39 children observed by covert video surveillance commented that 12 of their 41 siblings had died in unusual circumstances (1). The sad truth is that there exist some very unpleasant people. Those who try to identify these unpleasant people often stir up fear and hatred, as an inevitable effect of attempting to protect children from harm. No surprise then, that David Southall has been seen as an enemy by some. It may be comforting to have enemies - just look at the falling suicide rate during World War Two. In such unsettling circumstances as the CNEP study, some may find it very comforting to gleefully sacrifice a convenient hate-figure, but no-one should pretend that it is anything other than what it is - a self-indulgent spasm of hatred, a sort of social lynching, born of a kind of Pulp Fiction approach to life. Brian Morgan, as a freelance journalist, is probably aware of the phrase "not letting the facts get in the way of a good story". A climate of unjust vilification will not encourage talent into paediatric research. He may be unconcerned by the professional and personal destruction of one researcher, but he should pause to give some balancing thought to the damage being done to the interests of ill children in the future, who desperately depend on paediatric research. Conflicting interests: none. (1) Southall DP, Plunkett MCB, Banks MW, Falkov AF, Samuels MP. Covert video recordings of life-threatening child abuse: lessons for child protection. Pediatrics 1997; 100: 735-760
time to learn the lessons from Stoke 28 September 2000
David Hall, president RCPCH sheffield / london Send response to journal: Re: time to learn the lessons from Stoke	Dear Editor Re: paper by Hey and Chalmers on the Griffiths report – BMJ, 22.9.00. The careful and scholarly analysis of the |Griffiths report by Hey and Chalmers is most welcome. The multiple enquiries into the research and the child protection work of Professor Southall and his colleagues at the North Staffs hospital have unavoidably been very damaging – not only to the doctors and other professionals caught up in this, but to the clinical investigation and management of child abuse (1), the readiness of academics to embark on innovative and therefore high-risk research, and the reputation of the NHS for impartial handling and investigation of complaints. It is easy with the wisdom of hindsight to be critical of Government, the management of the trust concerned, and the panels of investigators, but the serious allegations which had been could not be ignored, and doubtless everyone involved acted in good faith. Unfortunately, those ordering and carrying out the investigations lacked adequate guidelines which could inform the proceedings and this must now be rectified urgently. Unless enquires are conducted with the same rigour as the research which they purport to investigate, their findings will always be subject to criticism, but to do this adequately will need substantial funding. Furthermore, such enquiries will be subject to the same variability of opinion as the refereeing of research papers, so panels must be chosen with great care. No research team is perfect and any clinical or academic unit subjected to the scrutiny which Professor Southall has undergone (2) would surely reveal imperfections, errors and omissions - but one may doubt whether many of us would come out of it as well as he has, especially some ten years after the events that were the subject of the original complaint. The original charges against Professor Southall were to do with his work in the child protection field. One disturbing result of the whole saga is an increasing reluctance on the part of paediatricians to take part in child protection work. This has always been a difficult area of practice because clinical decisions can easily be challenged, uncertainty is the rule rather than the exception and giving evidence in court is often intimidating. As a result of the attacks on Professor Southall’s work on how parents fabricate illness, this reluctance has escalated. The complaints procedure must now be re-visited and re-structured where child abuse cases are concerned. If the lessons are learned and acted upon swiftly, this unhappy series of events may yet have some benefits for research, clinical practice and children. Professor David Hall President, Royal College of Paediatrics and Child Health 1. Marcovitch H. “Diagnose and be damned” www.bmj.com/cgi/content/full/319/7221/1376]. 2. See www.rcpch.ac.uk
Children are being denied CNEP as a result of this campaign 28 September 2000
David Southall, Professor of Paediatrics Keele University Send response to journal: Re: Children are being denied CNEP as a result of this campaign	There are a number of inaccuracies and misconceptions in the letter from Mr. and Mrs. Henshall (25 September 2000) that I would like to correct. 1. They make this statement: "in a television interview for Channel 4 news Professor Southall categorically stated that no randomized trial into the use of CNEP for bronchiolitis had been conducted yet this article refers to such a study by his research team. This casts doubt of the plausibility of all of Professor Southall's 'evidence'." Reference to the attached transcript of that Channel 4 news program, including the preceding short film with which I had no involvement, shows that I made no such statement. 2. They make this statement "why did the study continue after the 10th infant in the study was strangled to death by the neck seal?" Reference to the published MD thesis of Dr J Raine [1] shows that pressure from the neck seal did result in skin damage in two very ill, hypotensive and oedematous babies cared for in the early stages of this study. This was openly reported and addressed at the time. The most severe case (of neck trauma) occurred in a 25 week triplet whose birth weight was <900g. No further problems of this nature occured once staff provided additional protection to the neck with a silicone gel dermal pad (similar to that used in walking boots) as the thesis clearly reports.[1] Nursing staff were also required to check the pressure of the seal every 6 hours and more frequently if the infant was below 28 weeks gestation, oedematous, hypoxaemic, hypotensive or hypothermic. In neither case was there any suggestion that the neck seal had interfered with breathing or with blood flow to the head. In the presence of oedema and a very severe reduction in skin perfusion, the seal clearly contributed to the skin damage. Damage to the skin had nothing to do with the deaths of either of these two children. 3. They make this statement: "Indeed there is no documentary evidence of either CNEP or CNEP+IPPV's safety or efficacy. There are however plenty of reports and documentation to show the many adverse and catastrophic events causing extreme morbidity or mortality in the unfortunate infants who were exposed to the experimental ventilators". There is documentary evidence in peer reviewed medical journals for the effectiveness of CNEP in many conditions involving respiratory failure in children (see www.baspcan.org.uk for a summary). It is true that there are also many sensational newspaper reports falsely claiming that there has been mortality and morbidity directly due to CNEP. The journalists writing these reports do not appear to have even a basic knowledge of science and in particular statistics. Such newspaper reports do a disservice, not only to families such as that of Mr. and Mrs. Henshall, but also to many children who are currently being denied this treatment because of the campaign against my work. 4. Mr and Mrs Henshall also wrote: "all the parents interviewed described the CNEP technique as a "kinder gentler treatment", the same words as used by the researchers when describing the technique to the review team". Since I have not been told which parents or which researchers spoke to Professor Griffiths and his colleagues, I am unable to comment further. None of the literature given to parents contained this phrase. However I think it is important to reiterate that the main use of CNEP is to ease the breathing in children who are breathless, tired and distressed. Nurses and parents do not use it instead of intubation and positive pressure ventilation, but to reduce the likelihood of this becoming necessary. The phrase " gentler treatment" is borne out by our experience of many hundreds of patients treated. The word kinder is less appropriate because it implies that intubation is unkind when usually it is undertaken to save the child's life and is therefore unavoidable. These issues and many others are addressed in my report on the web site of the British Association for the Prevention of Child Abuse and Neglect (www.baspcan.org.uk ) David Southall I must also make it clear that I am writing this letter as an individual and that the contents are my responsibility and mine alone. 1 Raine J The use of continuous negative extrathoracic pressure in the neonatal respiratory distress syndrome. MD Thesis. University of Manchester 1994
Comment by Griffiths on the nurses in Stoke 29 September 2000
Edmund Hey, Retired paediatrician Newcastle Send response to journal: Re: Comment by Griffiths on the nurses in Stoke	Since the senior nurse referred to by Griffiths and his colleagues in their commentary [1] on my paper with Iain Chalmers in this journal on September 23rd [2] remains under investigation by the central nursing regulatory body (the UKCC) and is implicated in enquiries that the Trust are still conducting into complaints about the conduct of the CNEP trial lodged three and a half years ago, it may be appropriate for me to report what I know of the matters in contention. Questions have been raised as to whether this nurse had the necessary experience to coordinate the Stoke element of this Study. The enquiry members say "The nursing sister involved said that she had never undertaken research before the trial, and had received limited support", whereas we say she had previous audit and research experience. She had, amongst other things, been involved in setting up a small study in several centres to look at the use of CNEP in bronchopulmonary dysplasia. It would have been highly unprofessional of her to take on work for which she lacked adequate experience, so the issue is of some importance. What she had been trying to convey to the enquiry team was that she had never undertaken a study as large as this before. Neither had any of the medical staff. That did not mean that she was ill equipped for the task. The appointment's panel at the National Heart and Lung Institute did not think her ill equipped. Neither did we. Her modesty under interrogation has done her a disservice. Her considerable unhappiness over the nature of the accusations being faced by the nursing staff in Stoke, resulted in her failing to correct the draft minutes of her interview by the panel adequately. More importantly they say she only received "limited support". That is true but, as the amended transcript of her interview shows, she made it clear that she was never left unsupported by Dr Samuels or Professor Southall. The enquiry team, by their selective report of what she said, will have left readers believing that she was criticising these two people when she was not. Had the enquiry team shown everyone what they were planning to say prior to publication, these misunderstandings would have been resolved before the NHS Executive ever published their final report. [1] Griffiths R, Stacey TE, Struthers J. BMJ 2000;321:755-6. [2] Hey E, Chalmers I. BMJ 2000;321:752-5
Re: time to START the Inquiries 29 September 2000
Lisa Blakemore-Brown, Independent Psychologist UK Send response to journal: Re: Re: time to START the Inquiries	I can understand professionals wanting to `put behind them` nasty little allegations. I can also understand them wanting to have little to do with `unpleasant people` and not wanting witch hunts. I also dislike unpleasant people and witch hunts but we cannot put behind us issues which have yet to be properly and publicly scrutinized. The Griffiths Inquiry was set up to examine research protocols and given the overwhelming amount of work undertaken by Professor Southall, some of it in child protection work,it is inevitable and appropriate that a consideration of methods of practice extended into other areas of work. With Professor Southall at the pivot of concerns, many who read the Griffiths Report were of the opinion that issues around MSBP were grossly under-represented. However, given the remit, more could not have been expected, which leaves us still in need of a full exposure of how MSBP is actually determined. Professor Griffiths recognised from Professor Southall's evidence that there can be profoundly disturbing instances of child abuse through fabrication/inducement etc. and this comment was made in association with comments about Covert Video Surveillance. He appropriately advised that a working party should be set up to clarify issues around accusations of what has become known as MSBP - we still wait the setting up of the working party. In the media and indeed in responses on this site, there is an assumption that an allegation of MSBP follows irrefutable evidence from video surveillance and that cases either always include video evidence or some other solid forensic proof of vile abuse. This is grossly incorrect. Indeed the ignorance about this issue leaves me astounded. In MOST `MSBP` cases (rapidly on the increase since this term was given credence and gaining strength by the lack of knowledge of its evolution and the secrecy which shrouds it and the blind protection of those who believe in it) there is NO use of video at all! Many are `diagnosed` through email contact between workers. Many cases are based on beliefs, not factual evidence, as are witch hunts, wholly wrong, as another respondent aserts. (1) These beliefs are made more powerful when figures such as Professor Southall put their name to them, especially given their well accepted success in other areas of work. Nothing was directly achieved by the Griffiths Inquiry in terms of raising awareness of the false beliefs which nurture the MSBP phenomenon, as this was not their remit. That has now been handed to politicians who were advised to set up a working party. We still wait. If respondents to the bmj want honesty and integrity and an end to secrecy and to witch hunts then they must call for a public inquiry into how phenomena such as the false MSBP phenomenon, is triggered and maintained and how a lack of knowledge of these issues could easily lead to vilification of BOTH innocent parents as well as innocent professionals. No-one should be falsely vilified in any decent society. False Illness or False Allegations? Blakemore-Brown The Therapist June 1998
Not Okey dokey 29 September 2000
Brian Morgan, Freelance Journalist Cardiff Send response to journal: Re: Not Okey dokey	I cannot and do not speak for Mrs Mellor, so I cannot say what wrong she may have suffered, as questioned by Dr Hopkins. I would say that it is the parents of babies who died or suffered brain damage during research who were wronged, and the babies who have suffered, as well as the victims of false allegations of child abuse, their children and families. It consistently astonishes me that your profession sees this as a campaign to inflict suffering on doctors, rather than supporting a campaign by parents to get answers and reasons for their own and their children's suffering. What is the matter with you all? You have no comprehension of the devastation suffered by families when these things happen, and the cost to them and to society. Where is the independently reviewed evidence for the deaths and harm allegedly the result of MSBP abuse - it's time the papers so regularly cited in support of these claims were independently reviewed. Many of the claims have been authoritatively challenged but now surely is the time for proper review of the video tapes and claims for deaths - what is the actual scientific and medical evidence that babies died at the hands of parents with this unrecognised esoteric psychiatric and/or personality disorder? Who has seen the tapes? Who knows what the doctors said to the parents before 'incidents' happened? Well we do know in some cases and it explains what happened afterwards - but parents were still accused and their children taken into care. Why have some tapes been wiped? I have seen video extracts where the alleged abuse was absolutely not happening - in one case officially acknowledged in court, yet still claimed as such in research papers - and I am therefore uncertain of the accuracy of the claims made for the others. On the other hand do you know that the cost of pursuing just one allegation of Munchausen Syndrome by Proxy through the courts was estimated conservatively in excess of £1 million ten years ago. The doctors who give expert evidence in these caes earn thousands of pounds in fees for writing reports and appearing in court. There have been many hundreds of cases in the last decade or so. It is a veritable industry - some might say gravy train. How many hospital doctors or nurses would this pay for - how much support could be bought for families where there is suspected abuse of this nature and they could be helped as the law says they should under the Children Act 1989 s 17 - but aren't? Has a single child actually been protected? How many were institutionally abused after being taken into care? Do the doctors who initiated proceedings know what happened to the children afterwards - do they really care? How many mothers 'admitted' doing something unspecified to their children on legal advice just to get them back - I know of some who gave in - and I know of many more who refused to 'admit' guilt. Some lost their children and others fought and won. There are nevertheless two wrongs that I have suffered - minor in relation to the above - one is to be wrongly arrested, imprisoned, charged and prosecuted on a false allegation that I was part of a conspiracy involving the disappearance of a nine year girl in Sunderland. This was allegedly on the eve of her being taken into care in child abuse proceedings resulting from the same kinds of medical diagnosis which the present fuss is all about. Two doctors at North Staffs are presently suspended during investigations into these child protection issues. One of them was involved in the abuse allegations at North Staffs which precipitated the disappearance. Where have you read about this? Not in the BMJ I hazard. But read this months issue of the Journalist, my union's journal. (1) I was 'triumphantly' cleared according to my solicitor, though my triumph is sadly tempered by the knowledge that 8 others remain under prosecution - including 5 family members and 3 supporters - persecution is a word I would prefer. I am taking legal advice which I hope will confirm suspicions of who my accusers were. However some of those still being prosecuted submitted voluntarily, offering no rebuttal, in order to have the opportunity to subpoena into court all those who might shed some light on why the abuse proceedings were brought in the first place, why the child was taken away and why the conspiracy charge was brought. The other wrong - of a sort - is to be repeatedly accused of being a 'campaigner', though it is a label I might be proud to wear in other circumstances, but for the fact that I am only a freelance journalist doing my job, which is exactly what the magistrate in Sunderland said I was doing during this so called conspiracy I was said to be involved in - it was a myth just like the myth being promoted that there is some kind of well funded campaign against the doctors (2) My unfinished investigation into the conduct of doctors implicated in unethical research - covering child protection, cardio-respiratory medicine and drugs research - will form the basis of a feature length documentary film currently being completed in the US by a much praised investigative film maker and director, drawing on cases from both sides of the atlantic. She began filming after I had been arrested and had faith enough in my integrity to carry on filming right through the proceedings until I was cleared. Thankyou. By labelling me 'campaigner' doctors hope to deflect attention from their actual conduct and evade answering the questions I have put over the years about false claims in research papers and covering up of secret sinister research projects involving children and the absence of consent. What is alleged to have happened in Stoke in connection with CNEP consent surprised me not at all. Par for the course I would say. Putting questions is what journalists do - well investigative journalists anyway - there are other journalists sadly who swallow any old guff hook line and sinker and get taken in by it and and print it. What I intend doing over the next few days is to collate all the unanswered questions, with the conflicting answers where they have been given, and email them to every one of the correspondents who have been so kind as to take an interest in this - and other interested parties, and we shall see who really has damaged the prospects for future medical research and child protection. Brian Morgan 1 'Police spied for my accuser' Journalist, October 2000 p10 NUJ London 2 Marcovitch H. “Diagnose and be damned” www.bmj.com/cgi/content/full/319/7221/1376].
......and nothing but the truth so help me God 29 September 2000
Penny Mellor, "Self appointed" Child Advocate Home Send response to journal: Re: ......and nothing but the truth so help me God	Perhaps Professor Southall would like to explain to the BMJ readers how he came to have copies of the consent forms he sent to Hey and Chalmers and if he had parental consent to release part of a child's medical records to a third party. He may also like to comment upon the fact that he has stated that an investigation into his child protection work at North Staffordshire Hospital was undertaken because of two statements attributed to myself (www.baspcan.org.uk) when the truth of the matter is, that I went to North Staffs with a parent and presented documentation written by him which was full of innacuracies and the parent herself laid a number of complaints about the way in which her case had been handled (she has now been fully vindicated, with complaints relating to coercion of social workers by himself and two other doctors being upheld by Staffordshire Social Services.) So serious were the concerns, that as I presented more and more documentary evidence, again written by him, that two independent expert panels were convened to take a further and more indepth look at his work. He may also want to explain why he told his Trust and Griffith that he had Area Child Protection Committee approval for the setting up of CVS at Royal Brompton when in actual fact he didn't (Witch Hunt Brian Morgan Rapid Responses BMJ) nothing but the truth? The Griffith Inquiry was set up to look at the research undertaken at North Staffs, CVS was research, it has been published as research and therefore did fall within the remit of Griffith Inquiry, Ms Nash and Dr Harrison visited my home just as the Inquiry was being set up, I presented them with a police statement written by Professor Southall in 1992 in relation to a CVS case. The content of this police statement showed a total disregard for the health and safety of a child by the doctors viewing the events, it was also pointed out that whilst this had happened, there had been absolutely no approval from either Staffordshire Police or Social Services and in fact Social Services had refused to become involved because of the dangers to the child. The suggestion by Professor Southall that the CNEP campaigners are trying to sabotage his child protection work is outrageous and shows a distinct lack of compassion for the parents who have lost their children during a clinical trial and I am appalled that anyone would stoop to this level, let alone somebody who claims their lifes work is for children. I don't suppose for one minute that this letter will be published, but if it is I want to make something categorically clear and that is I stand by every word that I have ever printed about Professor Southall and at no time has there ever been a concerted effort to stop the protection of children, the exact opposite is true, it is for the sake of children that I have campaigned so hard and the "whole truth" will emerge and the "campaigners" will be vindicated.
Are children really being denied CNEP as a result of a campaign? 29 September 2000
Brian Morgan, Freelance Journalist Cardiff Send response to journal: Re: Are children really being denied CNEP as a result of a campaign?	I welcome the addition to the corps of correspondents of the one really key figure in this debate. It provides a valuable continuing (I hope) opportunity to get to the heart of the issue - which I contend isn't whether or there not a campaign exists, and who is or isn't 'conspiring' with whom (not me - official - thanks Birmingham Stipendiary Mr B Morgan - no relation) - but what really went on during this lengthy trial comparing CNEP with IPPV, supposedly. Because we have already learned some really helpful things - we now have an explanation never given before as to why there are photographs of babies in the trial with both IPPV and CNEP being applied - CNEP wasn't just being compared with IPPV - some children had both - but there's no mention of this in the Pediatrics paper - it's only to be found in the Dr Raine Thesis, locked away in the medical library in Manchester. So what validity is there to the data published in Pediatrics - should we be told more about this? Turning to the matter of the neck seal and the injuries suffered by a London baby before dying. "This was openly reported and addressed at the time. The most severe case (of neck trauma) occurred in a 25 week triplet whose birth weight was <900g." says Pofessor Southall. Where was this reported? The parents weren't told - I checked by contacting the mother (yes we have ways of finding people, it took a day in a register office, we do it sensitively and keep them away from the public as well - it's not a case of a story at any cost) - there is a photograph of her dead baby and its neck injuries in the Raine Thesis in Manchester - I obtained a copy and after my first contacting the mother and telling her of its existence she agreed I should post one to her. She did not know photographs had been taken of her dead baby on mortuary slab - how sick is that? She was not told about these injuries - she was entitled to be told in my opinion - so was the ethics committee at North Staffordshire, so were the parents in Staffordshire - even if the problem had been solved - was it really solved? Was the ethics committee at Queen Charlotte's told? They and the researchers there have refused to answer questions about the study. Their turn will come one hopes. And why did the study terminate early at Queen Charlotte's but continue at Stoke - we should be told. What is the researcher's explanation for the Action Research funded NIRS study on cerebral safety supposedly being completed before the CNEP study began actually not starting until part way through, and a false claim being put in the Pediatrics paper? Don't false claims in research papers merit some kind of response? This is not a campaign - just looking for answers where none are being offered. There are plenty more questions like that. Griffiths was not allowed to look into what happened at Queen Charlotte's - it's time for some frank answers and for the NHS Executive in London to begin its own serious inquiries.
The Griffiths Report - the worst outcome would be that it becomes increasingly difficult to do resea 29 September 2000
Terence Stephenson Send response to journal: Re: The Griffiths Report - the worst outcome would be that it becomes increasingly difficult to do resea	Editor - The Griffiths Report contained a critique of two specific research projects and proposals on the regulation of research generally. Hey and Chalmers (1) express no view on these proposals. However, the accompanying editorial "agrees with the report's main recommendations on the need for better research governance in the NHS" without citing supporting evidence. The Griffiths report made three main recommendations which could inhibit clinical research. Firstly, concern about consent for research at times of stress. Most intensive care research requires consent at times of stress and if the researchers waited, this research would be impossible. The financial cost of the suggested 'third party consent' would inhibit research. Secondly, the inquiry stated that brain damage could not be reliably assessed at a short period of follow-up and criticised that follow-up was determined by the amount of funding available. To place a requirement that all research in children involves long term follow-up studies would abolish much research. The resources required are not addressed. Thirdly, Trusts should ensure that arrangements are in place for active monitoring of the progress of research. There is no indication that new funding will be available for this. Furthermore, "research involving vulnerable groups should be subject to an even greater degree of independent supervision than clinical research in general". Not for the first time, there will be the paradox of well-meaning discrimination against children. This has been the case for trials of new drugs where the perceived obstacles deter research in children.(2) The Department of Health's draft research governance (3) "to protect participants, improve quality and stop research fraud" gives no evidence of the magnitude of these problems and no discussion of the resource implications of implementation. "There are already powerful incentives to adhere to many of the principles" in the framework including the law, duty of care and high professional standards of researchers. No evidence is quoted to assess how often these safeguards fail. Un-referenced "recent enquiries into adverse incidents relating to research" are inadequate justification. Patients must be protected from inappropriate research and informed consent must be obtained. However, extrapolating from the Griffiths Report to clinical research throughout the United Kingdom must be thought through. Currently, 40% of drugs prescribed for children (4) are not licensed, in part because of the existing deterrents to research in children. More hurdles are likely to inhibit research further (5) and ultimately it is children particularly who will suffer. Professor Terence Stephenson Professor of Child Health, Academic Division of Child Health, University Hospital, Nottingham NG7 2UH References 1. Hey E, Chalmers I. Investigating allegations of research misconduct: the vital need for due process. The British Medical Journal, 2000;321:752-756 2. Aynsley-Green A, Barker M, Burr S, Macfarlane A, Morgan J, Sibert J, Turner T, Viner R, Waterston T, Hall D. Who is speaking for children and adolescents and for their health at the policy level? British Medical Journal, 2000;321:229-232 3. Department of Health Research Governance Framework ( www.doh.gov.uk/research) 4. Conroy S, McIntyre J, Choonara I, Stephenson TJ. Drug trials in children: problems and the way forward. British Journal of Clinical Pharmacology, 2000;49,93-97 5. Anon. UK paediatric clinical research under threat. Archives of Disease in Childhood, 1997;76:1-3 Competing interests I undertake research within an NHS Trust and a university, some funded in the past by industry. I was a member of the Trust LREC for 5 years and am lead clinician for the Directorate's R&D. I am a member of the Committee on Safety of Medicines and Chair of the joint Standing Committee on Medicines of the Royal College of Paediatrics and Child Health and the Neonatal and Paediatric Pharmacists Group, both of which have advised on drug trials in children. However, the views expressed are my own and not those of any of these bodies.
Support for and experience of nurses undertaking the CNEP trial 29 September 2000
Teresa Wright, Community Paediatric Sister and Health Visitor. Formerly Clinical Nurse Specialists North Staffs Hospital and Premier Health Trust, Kate Lucking Send response to journal: Re: Support for and experience of nurses undertaking the CNEP trial	The Griffiths Panel wrote the following: “9.3.5 The Review Panel is in no doubt that the nursing sister assigned to the project worked many more hours than she was contracted for, but she did not appear to have been provided with a protocol or system of documentation which made sure that everything was complete for all patients. Nursing staff and the sister in particular had not been trained or had adequate research experience for the job that they were being asked to do. Supervision from the researchers was inadequate, and the staff were poorly supported by trust nursing management.” As the Clinical Nurse Specialist employed for the project, one of us (TW) took on a support-nursing sister (KL) shortly after the trial had started. KL covered periods of leave and helped in the running of the trial whilst also working as a sister on the neonatal unit. She then took on the role of Clinical Nurse Specialist on a full time basis to supervise the last six months of the trial. Thus we were the two senior nurses running the project in Stoke. We strongly refute the suggestion that there was an inadequate protocol or means of documenting all of the material relating to each of the patients in the trial. We kept each patient’s data in a dedicated folder and all of this material we understand is available at the Trust for relevant personnel, and the quality of our work is there to see. The Panel did not ask to see either of our curriculum vitaes which would have revealed the previous research experience of TW, including involvement in the West Midland’s Perinatal Audit, a small part in a research study comparing two preterm milk formulae and the development and organisation of a small randomised controlled trial of CNEP in chronic lung disease of prematurity. It is also a matter of record that the panel interviewed only one of us (TW). It was intimated in the Griffiths Report that we did not receive support from Professor Southall during the period of the trial. Despite the fact that Professor Southall was based in London for a large part of this time, we always found him to be available to talk to and extremely approachable if we had any queries or concerns,however minor, regarding the trial. He provided us with continuous support,advice and reassurance, being available seven days a week day and night on a rotational basis with Dr Martin Samuels, who was also extremely supportive.
When you are in a hole, stop digging 30 September 2000
John Hopkins, GP Darlington Send response to journal: Re: When you are in a hole, stop digging	Dear Dr Smith, There was nothing in my earlier response to suggest the medical profession is indifferent to the suffering of families. My position is that of a provincial GP with no particular knowledge of these matters. I visit the rapid response daily for professional reasons and, presumably like others, have found myself reading rounds of submissions from those involved in the Griffiths enquiry. These submissions are damaging to all concerned: 1) They clearly damage the doctors involved. I've never met Professor Southall and know absolutely nothing about his work. However, he is as entitled as anyone else is to natural justice. If he is to be accused of malpractice then he should have clear notice of the detail of those charges, the chance to prepare a defence and an opportunity to question those who accuse him in public and under oath. A terrorist accused of the most heinous crimes is innocent until proven guilty and is protected by law from public comment prejudicial to his case. However, we seem to be approaching a situation where leading clinicians can be routinely denounced on the Internet with little regard for the normal rules of evidence. 2) They damage equally those who represent, or claim to represent, the interests of patients. It is clear from the intensity of their contributions how strongly they feel and yet, as an outsider reading these contributions it is impossible to judge their validity. The impression is simply one of overriding anger and pain which totally obscures any rational assessment of what is going on. 3) It is perhaps arguable that, by using the rapid response facility as an instrument of denunciation, rather than informed debate, these contributions will undermine the BMJ's own commitment to wider access. The Internet is not the place to get justice. That has to be done in the real world by cross examination, dialogue and, ultimately, by reconciliation. Yours sincerely, Dr John Hopkins
Do such Medical Ostriches really want a Speaker’s Corner? 30 September 2000
Peter Morrell, Hon Research Associate, History of Medicine Staffordshire University Send response to journal: Re: Do such Medical Ostriches really want a Speaker’s Corner?	Sir, I would like to comment upon two emails from Dr John Hopkins [1, 2]. What I have to say will focus upon an evaluation of the sentiments he expresses rather than the person who expressed them. When Dr Hopkins says that certain people in eBMJ letters are not responding to articles so much as ‘getting something off their chests’ [1], he implies that such people have their own agenda, which they wish to forward, which might not be entirely medical or may even be of only trivial interest to BMJ readers. As Dr Hopkins’ emails refer to previous emails by campaigners and investigative journalists and concern serious medical malpractice, and some alleged underpinning ‘cover-up mentality’ that seems to pervade medicine, which has been figuring prominently in the press in recent months, we are entitled to ask what exactly he is talking about. In particular, and more specifically, this train of thought seems to imply that the obvious and long-continued unimpeachable behaviour of medical practitioners requires no public discussion or comment and should not be placed under any type of journalistic microscope. And that such campaigners and journalists [‘busybodies’, perhaps?], working in a democracy like ours, have no right to do their work and express their views. Or make their contributions to these rapid response pages. Is that a fair interpretation of Dr Hopkins’ view? Well, the problem is, that while these campaigners probably would normally be working mainly at the margins of medicine, and would indeed, in happier times, be focusing only upon a tiny minority of events, yet more recently, in less happy times, as we all know, such matters have been dragged from the margins very much into centre-stage by the relentless flow of events. Certainly, therefore, these people can make their valid contributions here regardless of any agendas they may wish to forward. They make many valid points and it is not only in a court of law [2] where such matter are to be decided, but also in the public mind, and among the medical profession, which is afterall one of the solemn and laudable duties of a free press in any free society - to bring to public attention matters of wide concern and which affect all people - especially where such serious matters seem to have been carefully hidden for so long. Far from being excluded, therefore, these people should be welcomed to these letter columns so they can unburden themselves of their vast cargoes of information. What they have to say is very often 'exclusive' material of great interest. How else can the profession evaluate this material, without it being brought out in public? This is most certainly and absolutely a function of a free press. Some dialogue between the centre and the fringes of medicine is therefore, manifestly, valid and useful. I sincerely hope one further implication of Dr Hopkins letters is not that no-one within medicine should really bother to listen to these tiresome people, because they only have hidden agendas to forward, which in truth comprise so much hot air. I think for the public perception of the profession that would be a very worrying conclusion to draw. Does it not mean that at ‘Speakers Corner’ there will only gather a herd of ‘medical ostriches’, intent not on listening to these people ‘getting things off their chests’, but to ignoring them? If that were the case, then I disagree with the sentiment Dr Hopkins has expressed. Indeed, one would be hard pressed to do medicine a greater disservice, in these unhappy times, than for medical practitioners to blithely stick their heads in the sand so publicly and to pretend that what has been happening did not happen, and that no blame could be attached to the conduct of the profession in these woeful events. Surely, that is precisely the type of professional arrogance from which emanate all these dismissals, strikings-off and court cases? Have you learned nothing? If medical practitioners regard themselves as somehow elevated above such mundane matters as child deaths, non-consentual organ removals, patient murders, riding roughshod over parents’ wishes, etc, then clearly they have learned nothing from these events, and seem determined never to learn anything from them. Such ‘medical ostriches’ may not wish to listen at ‘Speakers Corner’ to critics thundering from their soapboxes, like the Methodist Lord Soper did for so many decades, but what choice have they got? So many serious and unpleasant matters have recently been brought to light [not one of which would have seen the light of day without the effort of these researchers], which amongst other things show that a form of professional arrogance has become entrenched, endemic and unquestioned within the medical profession. That is the focus of these campaigners’ and journalists’ activity, and not the good work that most medical practitioners do every single day of their working lives. Such professional arrogance also seems to be endemic among certain elite groups of males in society more generally. The police, military and government ministers all display this same sickening attitude from time to time, combined with a stubborn insistence that they have done nothing wrong and are above reproach. Any criticism of them seems always to be received in such circles in a hostile, flippant and dismissive manner. What is so lamentable is that they seem completely and uniquely incapable of seeing themselves as others see them. They do not see the arrogance and power dynamics of their social interactions and refuse to question their own authority in making decisions or how they deal with people. This is arguably the heart of this matter. Would it not, therefore, be far more gracious if such practitioners were to listen more attentively to what is being said, ‘get the message’ [Tony Blair style] and do something about it, rather than attacking the campaigners and journalists, who all too often spend many hours of their own precious spare time, for little or no financial gain, conducting their researches? Which is more than can be said for the people within medicine who they mostly heap scorn upon. What do such campaigners and journalists personally have to gain, from their investigations, except the truth? I hope this letter will not be regarded as yet another critic ‘getting something off his chest at Speakers Corner’. It is in fact an attempt to contextualise both sides of a complex debate. In addition, to speak of such serious matters by using phrases like 'okey dokey and ‘speakers corner’ might in itself be construed as dismissive, flippant and inappropriate. It does not signal to the world that they are listening or that they have 'got the message'. Far from it. More likely, it signals that someone has shot themselves in the foot by choosing to trivialise and make fun out of a serious issue. [1] BMJ letter, Dr John Hopkins, Speakers Corner, 25 Sept 2000 [2] BMJ letter, Dr John Hopkins, Okey dokey, 28 Sept 2000
Re: When you are in a hole, stop digging 1 October 2000
Brian Morgan, Freelance Journalist Cardiff Send response to journal: Re: Re: When you are in a hole, stop digging	A famous quote, attributed to Dennis Healey. It was meant to be a warning to people who were in trouble to stop making things worse for themselves. I am chagrined to see it used by Dr Hopkins - I had hoped to entitle one of my responses with it, for I believe that the profession, as it exists now, is burying itself with very little assistance or provocation from outsiders. It does not need campaigners or conspiracies - it can manage very well on its own. Stop digging - start answering questions.
Re: The Griffiths Report - the worst outcome would be that it becomes increasingly difficult to do r 2 October 2000
Penny Mellor, Child Advocate Home Send response to journal: Re: Re: The Griffiths Report - the worst outcome would be that it becomes increasingly difficult to do r	I see Terence Stevenson also failed to declare a conflict of interest, in as much as he appears as an expert witness in MSbP cases along side Professor Southall and also gets paid phenomenl amounts of money for court reports (average £2000-4000 per report). Oh well I suppose this is par for the course. Let's talk about research shall we? Let's talk about Cisapride and the terrible side effects of this drug including the deaths of God knows how many children. (Ref FDA adverse event reports 1997-2000 yes I do my research properly) Let's talk about how many parents were accused of causing their child's illness, when with the help of toxicologists, coroners, pharmacologists and police we are now proving it WAS this drug causing the apnoea, blue limbs, hypoglycaemia, hyperglycaemia etc and all the sypmtoms associated with these conditions. Everyone thinks they are so clever, they accuse the parent, the child is removed, all medication is stopped and the child gets better, therefore it MUST have been the mother. NO it was the drug. But of course nobody ever bothered to check this small detail out did they. There again why would the medical profession admit to the overdosing of an unlisenced drug to a child, it would make them liable wouldn't it? How many parents were ever informed of the dangers? How many were ever asked if they minded the prescribing of a drug that was surrounded by controversy? Still if research is to take place, then you musn't tell us too much because of course we would say "not on your life!" Then let's also talk about the funding of some of the "munch bunch" doctors, I don't suppose for one minute that the drugging of children has ANYTHING to do with the fact that the pharmaceutical companies are typically backing the individuals???? (Janssens Peter Milla Rome 11 project) God when will you all wake up and smell the coffee? You want research to carry on then YOU be honest, because at the moment the needs of the many outweigh the needs of the few and children are the sacrificial lamb on the altar of scientific advancement and just one child's death is one too many. You want research to take place in this fashion use your own children, let's see how many of you would be prepared to do that. Penny Mellor Conflict of interest Campaigner "self appointed" child advocate Currrently submitting evidence against Professor David Southall in all investigations Working with two investigative documentary makers into the use of drugs in children Respondent in person conspiracy Sunderland Advocate for over 50 parents false allegations of child abuse Not paid. No funding.
Moving up the evolutionary ladder 2 October 2000
John Hopkins, GP Darlington Send response to journal: Re: Moving up the evolutionary ladder	Dear Dr Smith, Having lately been compared by another respondent to an arthropod I should perhaps be flattered at promotion to an antipodean flightless bird. It is not my intention to trivialise anything; I earn my living dealing with the consequences of ill health and social deprivation and need no lectures on the seriousness of these matters. The problem for those of us ( including myself ) who use this facility regularly is that we may end up taking ourselves seriously. Dr John Hopkins
Paranoid and Conspiracy-prone 2 October 2000
G Wheatley, GP Surrey Send response to journal: Re: Paranoid and Conspiracy-prone	Believe me, there is nothing “trivial” or “fun” about the allegations made against the researchers in the CNEP trial. I was struck by the calm and measured replies made on this site by those researchers, which provided a refreshing contrast to the rather dreary synthetic outrage expressed by the likes of Messrs. Morrell & Morgan. On the subject of a Speakers’ Corner, I suspect that it would not work, not because it isn’t a good idea, but because the very suggestion was seized upon by the paranoid and conspiracy-prone as being wholly unacceptable, apparently on a moral plane similar to murder or rape. Indeed, their reaction is so scathing one wonders what language they have left to attack such crimes. Somehow the suggestion as to where on the website to have these discussions, became in Morrell’s reply a statement that he and others of similar persuasion had “no right to do their work and express their views”. No mere distortion here - rather a complete and fraudulent change of meaning. If that is a typical example of the logic used by such contributors it reveals a glimpse of the fantasy world that they inhabit - an Orwellian world in which if the facts don’t fit, they are altered accordingly. It does throw some light though, on their rather bizarre comments on press freedom. British Medical Association members provide this forum for debate, for all, at our own expense. I suspect the profession deserves some small piece of credit for this. The open discussion on this site is a clear demonstration of the profession’s commitment against censorship. I would be slightly more impressed by the dramatic foaming outrage of Morrell & Morgan if there were, for example, similar websites run and paid for by freelance journalists to allow the rest of us to pass comment on their more disreputable doings (rich pickings there, I suspect). Perhaps the collected body of honorary research associates in the history of medicine could provide a site as well, to allow others to pass comment on whatever it is they do. I have checked, and I’ve found no such sites. Perhaps you two gentlemen could come back when you have your own houses in order. But perhaps I’ve missed the point. What particularly taxes Mr Morrell is the medical profession’s “power relationships”, “authority” and “the same sickening attitude” that we apparently share with the police, military and the government; doctors are “seemingly incapable of seeing themselves as others see them”. Suddenly it all becomes clear. Leaving aside the fact that the discussion was originally about the CNEP trial rather than the rather dry topic of the characteristics of whole professions, the issue that Morrell is really concerned with is plain, old-fashioned class warfare, of a type that went out of fashion for everyone else a generation ago. He appears to gleefully seize on the personal tragedy of children and their families and, treating them with cynical contempt, uses their plight as a weapon to further his own rather dated political fantasy. In this contorted Stalinesque vision of wish-fulfilment, doctors stand with bowed heads, contrite and silenced, to be shouted at - “Have you learned nothing?” Given this, it’s a bit rich to complain if doctors answer back. I wonder if what really annoys Morrell about doctors, the police and the military is that, despite regular media attack, they all have poll ratings that show consistently high levels of public esteem and approval. Not that doctors can afford to be complacent - but then I can hardly turn the page of a medical journal without finding out more about revalidation, audit and ever-tightening regulation. The rather precious and self-important grandstanding of Morrell & Morgan gives the unfortunate impression of having no real interest or concern into the CNEP children and their families, other than as a weapon against both the hapless researchers and doctors in general. Their actions are akin to the vandalism I see, with depressing regularity, on local public buildings. Morrell & Morgan rightly demand high standards of conduct from the medical profession, yet they singularly decline to reach anywhere near those standards themselves. At no point do they consider any responsibility for the damage their random and self-indulgent accusations may have to the interests of ill children, who rely on research. It is high time for Morrell & Morgan to start acting like the considered contributors they claim to be.
View from Sarajevo 2 October 2000
Armin Alagic, CAI Country Officer, Bosnia and Herzegovina Sarajevo Send response to journal: Re: View from Sarajevo	Further to your article of 23 September, titled Investigating allegations of research misconduct: the vital need for due process, we wish to state our indignation at the presentation of the Griffiths panel’s report to the public via the media. The inconclusive but strongly suggestive report gave rise to endless, often irresponsible media speculation. The article included below, which entered the local press here in Sarajevo from an unknown source, affords an excellent example of the destructive sensationalism which has flourished so richly in the wake of the panel’s report, and which has spread from the CNEP trial to cover all aspects of research activity in which Professor Southall has been engaged. Clearly, the panel was not concerned with any of the possible effects of its implied accusations – one effect being the appearance of headlines such as NEW VICTIMS OF MONSTROUS PROFESSOR (see below) in the Sarajevo press, undermining the work of Child Advocacy International in particular, and British medical aidwork here in general. We were alerted to it by the British Embassy in Sarajevo, which was alarmed at the potential effects both upon our own work with the local paediatric and maternity units – work which the Embassy has consistently supported – and upon the reputation of all British aidwork in Bosnia and Herzegovina. We therefore warmly welcome the article published by the BMJ, since it opens a forum for reasoned debate and accurate reportage of the facts. There is clearly much more to the case that the public has never yet been apprised of – the media, like, it would seem, the Griffiths panel itself, have tended to build their impressions of the case on unverified, individual claims. We hope that in the wake of the BMJ article more enlightened presentations of the facts will result. Armin Alagic, CAI Country Officer Paula Blurton, EN, RGN, RSCN We, The authors of 'View from Sarajevo', would like to declare our interest, as members of Child Advocacy International, the UK children's charity founded by Professor Southall. Evening News Vecernji Novine Sarajevo, 13 September 2000 Evil experiments on children New victims of monstrous professor Professor David Southall recently used to be very respectable in medical circles. He even received a reward for his activities in helping Bosnian Children. His world started to collapse when it was found out that the good professor is not that good. Under his charge, at least 28 children, premature babies, died or received severe brain damage. New accusations have arrived against him. 900 babies were victims of his experiments with his twisted “Black box”. The babies were connected to the box, as part of an uncontrolled procedure in which samples of the dreams(?) of children in cots were measured. Police agreed to investigate the complaint of one mother, Elayne Dunn, who said that her baby got burns caused by the machine. Ms Dunn (38) and another parent, claim that they were accused of child abuse when they confronted Southall with proofs that the box hurt their children. Southall was suspended And his work is under investigation by the main medical council. During the experiment with the black box parents were told that babies were connected to a monitor the size of a small briefcase, with several wires. They were warned to keep children in a cage -that is, a playpen - as much as possible otherwise they might interfere with the work of the instruments. The boxes which were designed by Southall were paid for by charity funds and cost 100 000 pounds. The machines were supposed to heat the blood so that it would be possible to measure the oxygen level. Similar monitors are used in hospitals but for short periods and in controlled circumstances. Mr. Dunn said that her now nine year-old daughter got severe burns. When she complained to the professor he warned her that they could take her child away from her. Ms Dunn said that later she saw notes by professor Southall in which she was said to be suffering from neglect. In other words Southall thought that she was deliberately hurting the child in order to attract attention to herself. After she recently read an article about Southall’s experiments on premature babies (which was published in the tabloids) Elayne approached the police “ I believe this is a job for Police. Wounds were caused when she was a baby and somebody must be responsible for her sufferings”, she said. The Dunn family was directed to Southall when little Inessa (?) started to have sleeping problems, and started fainting. He said that he would like to connect her to some new machine which measured the level of oxygen in the blood. Altogether it looked harmless, and I agreed, said Mrs Dunn. But I experienced a shock when I saw the equipment. A big black box with wires. She was told that even at home she should connect Inessa to it. ‘I was told as well that I should keep my daughter in a cot or some other surrounded space and that she should be connected as long as possible to the machine. I did not like this nor did Inessa. I had to connect wires to her chest, arms and legs. Iness was very depressed but we kept going for months until burns started to appear on her skin, in the places where the wires were located. She kept repeating “it is burning, Mother, burning”, and it obviously hurt but we continued. She said that Southall went totally mad when she showed him the wounds and at that point Ms Dunn was told about her diagnosis. In the beginning I was broken “And afterwards I became angry. I asked myself – who gave Southall the right to pick on me like this.” Southall later in a medical journal admitted that the experiments were not conducted in controlled conditions. To a New Zealand TV Company he mentioned a machine he had made with the help of a medical electronic company. He said that they had observed 900 babies. ‘I am pioneering this special field.’ Mr. Bozier is the second parent who accused Southall, because his daughter Hannah got burned because of the black box. After Bozier challenged Southall, his child was also designated as suffering from “neglect” He was not as lucky as Ms Dunn. His daughter was taken from him. After eight months of strong battles, social workers returned Hannah to her father, because two pediatricians managed to overturn Southall’s diagnosis. Mr. Bozier (34) said, “All this experience was real hell. Our lives were destroyed.”
Re: When you are in a hole, stop digging 2 October 2000
Penny Mellor, Child Advocate Home Send response to journal: Re: Re: When you are in a hole, stop digging	Dr Hopkins must be under the impression that the internet was our first choice to expose malpractise, well for the uninformed here is what was done before we had to use the only resource left open to us. Us being parents trying to expose false allegations and the use of unethical and unconsented research practises whilst children are under an MSbP allegation. The following can be supported with documentary evidence and includes many families. 1989 Serious complaints to MPs, the DOH and GMC about David Southall's research activities. 1990 DOH GMC further complaints about David Southall. 7th July 1991 Mail on Sunday voicing serious concerns about research practises David Southall. July 1991 complaints to the GMC, Ron Davies MP, Virginia Bottemly MP, Department of Health. 1992 serious complaints about research activities David Southall GMC, DOH, North Staffs NHS executive Staffordshire Police. 1993 more complaints GMC, Staffs police and social services, North Staffs Trust, DOH. 1994 RCPCH complaints, DOH complaints, Police complaints, GMC complaints, North Staffs NHS complaints. 1995 RCPCH, DOH, Police, GMC, North Staffs NHS. 1996 RCPCH, DOH, Police, GMC, North Staffs NHS. 1997 RCPCH, DOH, Police, GMC, North Staffs NHS. 1998 RCPCH, DOH, Tony Blair, GMC, Jack Straw, North Staffs NHS, Brompton NHS, GOSH NHS, North Wales Police, South Wales Police, Staffordshire Police. 1999 RCPCH, GMC, Tony Blair, William Hague, Jack Straw, Anne Widdecombe, Liam Fox, several police forces, Health Select Committee, Welsh Assembly. 2000 All of the above still and Amnesty International. We tried every complaints procedure open to us ALL failed us, every single one. Tell me Dr Hopkins just what else are you supposed to do, it is only through the internet that the police have now finally acted, because the evidence is now irrefutable. The medical Mafia is a closed shop. There was no other choice, I wish there had have been, because this has bankrupted so many of us, financially, emotionally and physically. Where were any of you?
Re: Paranoid and Conspiracy-prone 2 October 2000
Brian Morgan, Freelance Journalist Cardiff Send response to journal: Re: Re: Paranoid and Conspiracy-prone	Well well, still digging I see. What exactly have I personally said that upsets Dr Wheatley so much? He says: 'I would be slightly more impressed by the dramatic foaming outrage of Morrell & Morgan if there were, for example, similar websites run and paid for by freelance journalists to allow the rest of us to pass comment on their more disreputable doings (rich pickings there, I suspect).' Dramatic foaming outrage - disreputable doings - rich pickings there. Strong language - please extract the quotes from my writings - chapter and verse - to which these descriptions apply. Perhaps Dr Wheatley thinks it is acceptable to photograph a dead baby's neck injuries on a mortuary slab and not tell the parents about the injuries or the photograph - we should be told? The parents from Oxford and the John Radcliffe episodes seem to think they had a right to be told what went wrong over there. Freelance journalists do not have a bulletin board - not that I am aware of - but we do have a trade union (just as doctors do) and we have an ethics committee to which Dr Wheatley may refer any complaints he has about my style or actual words I have used. I would suggest that in the first instance he writes to my General Secretary, Mr John Foster, National Union of Journalists, Acorn House, 314 -320 Gray's Inn Road, London WC1 8DP, in the first instance, who will pass his complaint to the appropriate committee chair. Mr Foster is of course familiar with the ways of doctors. He went to see your secretary Dr Armstrong about Professor Southall's defamatory dossier on me - now there's something you could describe as foaming - and got the BMA to withdraw it. What neither Dr Armstrong or anyone else in the medical profession seems to realize is that the doctors supposedly the target of a so called conspiracy are actually proxies for a very widespread anxiety about the profession itself. This team has left behind it a trail of very angry parents like no other researchers I know of in history (I stand to be corrected Mr Morrell) - mothers particularly - who say their children have been wrongly removed and taken into care, put up for adoption, on the basis of an unproven medical theory of child abuse - you do not wrongly take children from their parents without making a lot of enemies. That's leaving aside but not minimising the anger of another group of parents who more recently said they were not told their children were in a ventilator research project. The more the profession leaps to the defence of these practices the more it will be condemned. It is not so much individuals who are on trial but the profession, and its reactions repeatedly condemn it. Of course any accused individuals have the right to a fair trial - but the parents have been vainly asking for a fair investigation of their complaints for more than half a decade - in May 1994 a small group of mothers publicly asked Professors Meadow and Milner at the BPA headquarters in front of the press for an investigation of false allegations of MSBP with very great similarities and all emanating from the research team led by Professor David Southall. I was there and I have a tape recording if anyone would like to email me for my address and a copy I will send it - I won't hold my breath. Send me a blank C100 (preferably) tape with a reply paid envelope, otherwise C60 or C90. Needless to say the BPA did not listen to the parents - they weren't listening then and the RCPCH isn't listening now - is it any wonder there are some very angry people out there? Dr Wheatley - make a complaint to the NUJ about me - put up or shut up.
Some facts please. 3 October 2000
Mike Planigale, Husband of Paediatrician / Student Glasgow Send response to journal: Re: Some facts please.	I think that correspondence about medical issues from non-medical professionals is a valuable part of 'Rapid Responses'. The BMJ frequently has articles putting the lay experience. I do not think that most email (including this)are appropriate for publication in the BMJ qua scientific journal, as they do not add to understanding of the topic debated, that is can inquiries be trusted? However, I think that even lay correspondents should be encouraged to keep emails pertinent. Mr. Morgan please do not go on about your brushes with the law, whether you were convicted or not would make no difference to the validity of your arguements. Interesting though it may be to you it is boring to the rest of the world. Emotive comments obscure facts eg 'how sick is that?'in relation to photographic recording of a post mortem, a photographic record is no sicker than a written description. You may have some valuable information, but I find it dificult to disentangle form your prose, perhaps with a film or book forthcoming you are reluctant to present this as it may act as a spoiler. I understand that as a professional journalist you have to earn a living. I know, the above is not pertinent, mea culpa! Now to the subject at hand. I think an important question and one not addressed by your correspondents is why the inquiry was poor. (I think the evidence is that it was). I assume that like much in the NHS it was done on a restricted budget. I do not know how much time and support Griffiths had, but obviously not sufficient. I have no doubt that he is competent, and given resources could have done an excellent job. I think there should be an inquiry in to inquiries, good practice should be defined, minimal levels of support established. It is vital that we can all have confidence that inquiries, public or otherwise, will have carried out a careful and systematic scrutiny of all evidence easily available or not. Perhaps retired detectives could be recruited to provide professional expertise! I think there is a real question about research in the NHS, and involving children in particular. Any intervention may result in harm to an individual, even if beneficial on a population basis. In a therapy that is being researched one may not know the balance, informed consent then becomes informed ignorance. Conveying this uncertainty is dificult, and a particular problem in time critical research such as in resusitation. Yet research on life saving treatments is important. I would suggest a no fault compensation scheme for research, but this could be seen as iniquitous if some one in the conventional arm received compensation for a side effect that was not compensatable in normal practice. Equally I sense that the parents of children who believe they were harmed by the experimental intervention do not seek compensation, but are angry at the failure of the health service to protect their child. The Griffiths inquiry seems only to have muddied the waters. Any real report on research in the NHS has to ask is there sufficient support for research? Is good quality statistical support available, do independent reviewers have sufficient time to help improve a project etc? All to often the project that emerges is not ideal but what is possible to do with the resources available. If too many hurdles are put in the way of researchers this may result in harm because new therapies are delayed. A research policy needs to support bredth and depth. The question of diagnostic criteria for MSBP and the duties of health and social services practitioners required by the Children's Act and departmental policies in cases of suspected child abuse are important but extraneous to the articles published.
A journalists' ethics committee? 3 October 2000
G Wheatley, GP Surrey Send response to journal: Re: A journalists' ethics committee?	I’m fascinated to hear from Brian Morgan that the national union of journalists, of all bodies, has an ethics committee. Perhaps the medical profession should take a look at it, to see if there is anything we can learn. Does the committee contain any public representatives who are not journalists? Does it have any members with any special ethical expertise? Does it, for example, approve stories before they are unleashed on the public? If not, what does it do? If it is a disciplinary body, when was the last time a journalist was censored, and for what? Do journalists risk being banned from work for a minimum of 5 years? How often are journalists found guilty, and what penalties do they suffer? Does it feel successful in imposing high ethical standards across journalism? I feel we should be told!
Re: Re: Paranoid and Conspiracy-prone 3 October 2000
Mark Cotton, Consultant Physician Airedale Hospital Send response to journal: Re: Re: Re: Paranoid and Conspiracy-prone	Editor - As a journalist you may be able to elucidate Brian Harris's eMail. He says that one can complain to the NUJ's ethics committee about journalists. On the NUJ website http://www.gn.apc.org/media/nuj.html there does not appear to be such a body. There is a disciplinary committee but this only accepts complaints from other members of the NUJ, the committee only consists of journalists and only deals with breaches of union rules. The code of conduct which describes the ethical code of the NUJ appears unenforced. Where is the equivalent of the GMC? Just as journalists treasure the confidentiality of informants, doctors treasure patient confidentiality, technically this does not cease with death. Informing relatives (excluding guardians of minors) is not something we can freely do. Why should journalists not be required to be open but others so to be? As part of the drive to improve practice confidential inquiries in to complications e.g. CEPOD have been developed. There is an important question about publication of such audits. In pragmatic terms it is more important that action be taken to reduce the chances of an adverse effect in future than to inform people of what has happened in the past. Ideally both should happen, but while the culture of blaim characterised by much of the correspondence persists, then confidentiality may be a necessary evil.
Reconciliation and consent 3 October 2000
John Hopkins, GP Darlington Send response to journal: Re: Reconciliation and consent	Dear Dr Smith, Forgive the daily responses which are made in the spirit of debate. Twelve or so years ago there was an inquiry into the handling of child abuse in Cleveland. This was conducted by a High Court Judge, Mrs Butler-Schloss and, although expensive, her report commanded the confidence of all those involved. The background to her report was of a clinical team using an untested technique. Only two out of four Consultants thought it was effective and, in their haste to implement it, they were unable to command the confidence of the parents of the chidren. The result became known as the Cleveland Child Abuse Scandal. Butler- Schloss drew two key conclusions. The first was that when dealing with new techniques it is important to have agreement among the clinical team. The decision making should not be left to one or two individuals. The second recommendation was that parents need to be involved at every stage. In the aftermath of Bristol and Griffiths it is tempting to ask if we have learned anything. However that is unfair to clinicians. The pressure on front line teams is such that it can be almost impossible to set aside the time needed to build relationships on which true consent depends. This is particularly true where children are concerned. The bitter paradox of their care is that the more critical the situation the less time there is to talk to the parents. The only way to establish the truth of the Griffiths case may be some form of judicial review. Neither side has anything to lose from a thorough examination of the truth by an experienced Judge and the issues are of such importance that cost should not be an issue. When the facts are agreed, the interpretation of them may continue to vary. However, even the most profound and intractable disputes must, sooner or later, be reconciled. Yours sincerely, Dr John Hopkins
Competence of the Griffiths Review 3 October 2000
Ivor Rowlands Send response to journal: Re: Competence of the Griffiths Review	As a retired physicist and mechanical engineer I am perhaps at an advantage in criticising the Griffiths Review [ Ref. 3 ] simply as a document since I have no knowledge of medicine and hence cannot usefully comment on those issues. I became interested in the human rights and welfare of the NHS aspects of this issue purely as a reader of The Independent whose coverage has been particularly deplorable - purely sensational and not at all concerned with the damage it has wrought. My only connection with David Southall [DS hereafter] is that I have acted for him in pursuing complaints about media coverage on his behalf, primarily because the Press Complaints Commission do not think that unwarranted attacks upon the NHS and its staff are a matter of public concern and would therefore only consider complaints by directly involved parties such as DS; complaining to the PCC is an occupation about as exhausting and productive as the labours of Canute. I hold no remit whatever for DS's professional competence or behaviour. Being the sort of person who likes to have at least some idea of what it is I am going to be talking about, DS kindly sent me a copy of the paper reporting the CNEP trials [ Ref. 1 ] so that I could understand their nature and scope: with this single document as reference it is possible to come to the same conclusion as Hey and Chalmers that the Griffiths Review is incompetent. Now having learnt that neither DS nor others criticised saw the report before publication I can add that it also constitutes a grave violation of their human rights and if it is not in conflict with the European Code then it ought to be. It is certainly in breach of the duty of care the NHS as employer owes to DS and his colleagues. I wrote to Professor Griffiths on the 5th of June last with six pages of comments on the Review to give him the opportunity to correct the factual points and comment on more general points. He replied courteously but did not respond to a single point raised - even the factual ones I raise below. It is fair to say he did offer a discussion but facts do not need discussion. I did not respond to his letter since DS advised me of other rebuttals being prepared but now ask the Panel to respond in this public forum. None of the issues I raise concern anything other than the Review itself. Error 1. Ignoring a primary source. It barely seems credible but the paper reporting the trials [Ref. 1] is not referenced in the Review. This could have been a clerical error but it is not since those parts of the Review concerning the CNEP trials read as though the Panel had not read the paper. This entirely destroys the value of the Review in the affected parts because while the Review is not an academic paper in the sense of the format and language used it certainly must comply with the relevant disciplines if it is to have any credibility. The discipline here is that the published paper must be taken as the authoritative prime source of information on the trials, if only because it has gone through the peer review process upon which the Panel is so keen. This error has many repercussions; for brevity I give just two examples:- (a) Clinical outcome score. Review para. 7.1.3 says "The Panel asked Prof. Southall how the score had been constructed." Why? The paper is explicit and states [page 1157] "The score was developed by six paediatricians and a statistician". So far as I can judge this includes staff from two centres and 2 or 3 FRCP's - no mean task force - but the Review gives no credit or feel for this. (b) Brain damage follow up. In paras. 7.1.7, 9.4.2 and 9.4.3 the Review is critical of DS and his colleagues for lack of follow up but on the last page of the CNEP paper it states "An important omission from our study is the lack of incorporation of long term neuro developmental follow-up." The Review gives no credit to DS et al for being aware of this issue and raising it in this manner. Why not? As Lady Bracknell might have said "For one professor to lose a primary reference might be carelessness but for two professors to lose it is surely incompetence". Panel Q1. Why was Ref. 1 not listed in the reference list of the Review? Panel Q2. Did the Panel members read Ref 1 before commencing the investigative work? Panel Q3. Why was Ref. 1 not used as the prime source for the relevant parts of the Review? Error 2. Inconsistency and lack of fairness to DS. (a) Review para. 1.5 says that the Review does not attempt to apportion blame but paras. 9.4.1, .2 and .3 discusses the lack of brain damage follow up noted above. The Review paras. conclude "If he was unable to raise the additional money Professor Southall could have decided not to go ahead with the trial. Instead he went ahead anyway." This wording is clear that the Review Panel thought that DS should not have proceeded with the trial and is a hindsight judgement contrary to para. 1.5. If the Panel thought that DS merited criticism it should have stated its position unambiguously and modified para. 1.5. (b) Review para. 1.6 says that performance would be reviewed against contemporary guidance and practice but in paras. 9.2.6 to 9.2.8 there is criticism of DS without any comment as to how his performance compared with what might be expected at the time or comparison with others in his situation, i.e. the supervision of work at remote sites. Thus the Review fails to meet its own, self set standards. DS [Ref 2 ] says there are 9 such direct criticisms of him; I can well believe it. Panel Q4. Why did the Panel depart from their terms of reference and their own stated rules and make direct criticisms of DS and his colleagues? Error 3. Duty of care. As line managers of the NHS, Messrs Griffiths and Stacey have a direct duty of care to NHS employees. Blind to this duty, they have published a highly critical Review of the work of a distinguished colleague without giving him any opportunity to respond to those criticisms or to defend himself. This is totally unacceptable by any civilised measure. In this context it is wholly immaterial as to whether the criticisms were warranted or, as we now know, were entirely without foundation. Unchallenged, the criticisms were career destroying and were piled on to an individual whom they almost certainly knew has already suffered 7 or 8 years of press and other harassment [including death threats] due to his work on child protection and in the immensely difficult field of MSPB. Our treatment of fellow human beings is an absolute duty on us all and there can be no passing the buck. By this action, which they have had many months to consider, Messrs Griffiths and Stacey have shown gross contempt for the rights of others and that they are not fit persons to hold positions of their responsibility and for this reason alone should withdraw their Review, unreservedly apologise to DS and his colleagues and resign. Unfortunately the issue does not stop there; the Review was issued by the Department of Health and must have been, or certainly should have been, reviewed there. It is highly probable that it was also reviewed by staff at the three NHS regions involved. I therefore put the following question to those named below for their individual responses since they each have their own responsibility. Question. What steps did you or your organisation take to ensure that the rights of NHS employees were not infringed by the publication of the Griffiths' Review and how did you discharge your duty of care to these employees? This question is addressed separately to Mr Alan Milburn, M.P., Secretary of State for Health. Mr David Fillingham, Chief Executive, North Staffs Health Trust. Mr Stephen Day, Regional Director, West Midlands Region. Ms. Barbara Stocking, Regional Director, South East Region. The parents. Finally , there is one very important group who seem to be little considered in all this mess and that is the 120 odd sets of parents who participated in the trial. Regardless of how their child thrived and especially if the baby did not survive it is easy to imagine the concern or worse they have experienced with all the sensational publicity on this issue. Mercifully the Griiffiths Review did not attack the clinical outcome of the trials directly but it did its worst to paint the trials in a poor light, encouraged the media witch hunt and certainly did not help. Now that the medical profession has effectively endorsed the clinical excellence of the trials and supported the outcome analysis of Ref. 1 which indicated an outcome benefit of some 10% over the current treatment, it would seem that some reassurance can be given to these parents that their child did receive the best treatment available. I suggest to Mr Fillingham that it is now perhaps timely to write an appropriate letter to those affected. This aspect also raises the issue that if it is now accepted that CNEP is the best available treatment for appropriate patients then it should be introduced as the "standard" treatment for such cases. Thankfully that is not a matter for a mere engineer. Over to you, Mr NICE. Ivor Rowlands. Contact at ibiltd@compuserve.com References 1.Samuels MP, Raine J, Wright T, Alexander JA, Lockyer K, Spencer SA, Brookfield DSK, Modi N, Harvey D, Bose C, Southall DP. Continuous negative extrathoracic pressure in neonatal respiratory failure. Pediatrics 1996; 98:1154-1160. 2. Southall D. "Response to the Griffiths report." Available at www.baspcan.org.uk/ 3.NHS Executive West Midlands Regional Office. Report of the review into the research framework in North Staffordshire. 8 May 2000
Re: Some facts please. 3 October 2000
Penny Mellor, Child Advocate Home Send response to journal: Re: Re: Some facts please.	A picture speaks a thousand words and if pictures are of no validity in science or medicine then why are there so many published in the BMJ to illustrate injury or disease? I am also offended that you obviously think it's OK to photograph dead babies injuries and publish them without the consent of a parent. God help your children.
Re: Reconciliation and consent 3 October 2000
Penny Mellor, Child Advocate Home Send response to journal: Re: Re: Reconciliation and consent	Dr Hopkins I would welcome a judicial review, in fact I go one step further and ask for a public inquiry for the truth of this terrible set of events is shrouded in secrecy by the very Children's Act 1989 that was set up to stop anything like Cleveland happening again! If I were ever to be prosecuted for the contempts of court I have committed in my efforts to alert the world of the most appalling abuse of children, I have calculated that I stand to serve over a thousand years in jail. How sad for our children and their parents, that the very act put into to place to protect them is actually used to silence innocent parents leaving children bereft of their families. I see you practise in Darlington, so Cleveland is very close to home for you. All we have ever wanted was the truth, that is all and the truth is as elusive now as it was over ten years ago when concerns were first raised. I came out of the North Wales Care Homes investigation, working with the male victims of abuse from care and entered into a world that I never dreamed existed, and believe me I thought I had learnt all there was to know about child abuse, never in my years of working with victims of abuse have I been so shocked at the out and out abuse of children by the very people who swear to preserve their health and well being, a world of slamming doors, arrogance, lies and deceit. The needs of the few outweighing the needs of the many, with zealots running the show. Is parity so much to ask? Is asking a parent if you can attempt to help their child with "revolutionary" treatment beyond some clinicians? Do they see the child as "theirs"? Are they so good at their jobs they know it all? Is medicine that definite? Please all readers note one thing, where in any of this have the clinicians and nurses under fire ever expressed any sort of sadness that babies died, or acknowledged the deep grief of the parents? All you hear is "me me me" from all of them and that's all you have ever heard. Sorry would seem to be the hardest word of all, because I am sorry, sorry that I belong to a society that has so little regard for the life of another human.
Re: Reconciliation and consent 3 October 2000
Brian Morgan, Freelance Journalist Cardiff Send response to journal: Re: Re: Reconciliation and consent	What a breath of fresh air - thank you Dr Watkins - at last! What have we been saying for more than half a decade - Cleveland yet again? If the authorities had taken notice in February 1994 when my Dispatches was broadcast and I reported the comments of doctors like Professor Colin Morley saying this, and Dr Paul Johnson speaking about the methods being used, we would not be arguing the toss now. All those wasted years. But as for Dr Cotton - my name's Morgan not Harris - he may be thinking of Brian Harris, one of the Independent's greatly respected photographers, with whom I have had the great privilege to work on stories for that newspaper and who inspired me to want to become a professional editorial photographer as well as a reporter. And the NUJ does indeed have an 'Ethics Council' - as I have said before do please write to John Foster my General Secretary. If any restrictions exist I will attempt to have them waived. As it happens I have been complained about before - the leader of MUM, Mothers under Munchausen, the defunct organisation which I am supposed to be in cahoots with actually complained to the union because I was too soft on Professor Southall and had publicly defended his research on London Weekend Television in 1995. Never hear about that do we? We don't have a 'General Journalism Council', because journalism isn't a statutory self regulated body as medicine is - we are subject to common law, and we don't have recourse to the protections doctors enjoy. We can be sued however, and I wonder, if I am such an awful person telling such awful lies, and attacking people with unjustified criticisms, why I haven't been sued - be my guest if anyone thinks I cannot support what I say with evidence? Make my day - I'll enjoy getting more information using disclosure - and they know it. Dr Wheatley - John Foster is waiting for a complaint from him - attacking my union may be his best form of defence but I don't see how it answers the public's concerns about the medical profession. Why doesn't he offer to help my Ethics Council with advice and examples of good ethical practice from the medical profession - there must be some I'm sure - but he might get cross examined on some of its worst practices. Mr Planigale - I only mentioned the false criminal allegation because both Dr Harvey Marcovitch and Professor Southall had thought these charges sufficiently interesting to mention them in the BMJ: 'Another individual has been charged with conspiracy to abduct a child' (1) and in a BMA press release: 'In 1999 both Mr. Morgan and Mrs. Mellor were arrested by the police for Suspicion of Conspiracy To Abduct A Child; Mrs. Mellor has since been charged with this offence'. (2) In my opinion the phrase 'brushes with the law' is pejorative suggesting that I regularly court confrontation with law enforcement agencies. Not true. He says: "Emotive comments obscure facts e.g. 'how sick is that?' in relation to photographic recording of a post mortal, a photographic record is no sicker than a written description." Perhaps he should look at the photograph of a baby upended with ruby red excoriation of its genitals and posterior showing in the current issue of the BMJ at Minerva. This picture is worth a thousand words - some might say it's publication is inappropriate - but please note the BMJ requires parental consent before publication of case studies such as this - I hope the parents did give their consent - I have no reason to think the BMJ would not see proof of this. But the parents of the child suffering severe neck excretions in the CNEP study were not even told about them - so of course they could not be told about the photograph. And the neck damage - I will tell you in passing - this was not even recorded on the death certificate. 1 'Diagnose and be damned' Marcovitch H BMJ 1999;319:1376 ( 20 November ) 2 BMA Press release and dossier, Monday 11 October 1999 'LEADING PAEDIATRICIAN HITS BACK AT ORCHESTRATED CAMPAIGN TO OBSTRUCT CHILD PROTECTION WORK' 3 http://www.bmj.com/cgi/content/full/321/7264/842/Fu1
Re: Competence of the Griffiths Review 4 October 2000
Brian Morgan, Freelance Journalist Cardiff Send response to journal: Re: Re: Competence of the Griffiths Review	Well well, how interesting - Professor Southall complained to the Press Complaints Commssion in 1997 following the publication in the Independent on Sunday of the first article in any national newspaper reporting the concerns of families in North Staffordshire who had learned their children might have been included in research without fully informed consent. I was co-author of this national exclusive along with Chris Blackhurst. This article followed a substantially similar story published in the Stoke Sentinel by David Blackhurst - no relation. Mr Rowlands and other readers of this column may not realize that stories such as this come from the public - the sources are the parents who have complained - we as journalists would not know about these scandals if the public and parents did not bring them to us. Perhaps when Mr Rowlands suggests as he did towards the end of his response that the parents are in some way victims of sensational publicity is so disingenuous as to be breathtaking - it was the parents who sought the publicity - and campaigned for an inquiry - not journalists. It is distinctly possible - given Ivor Rowlands' critical opinions of the Independent - that he may have been involved in helping Professor Southall draft this complaint - I am happy to declare that I helped the Independent draft its response - for which the newspaper is of course fully responsible as publisher. My role was simply to deal with the facts so that the publishers would know they were on firm ground when responding. The Press Complaints Commission rejected Professor Southall's complaint. Readers of this column know who I am - where I live, what I do - I would like to know a little more about Ivor Rowlands, other than the information that he is a retired physicist and engineer. I am a physicist too - and like Mr Rowlands I have a great respect for the facts, for science and logic. You do not have to be a doctor to read and generally understand scientific papers that also happen to be about medicine. It's just as well given some of the misreporting one comes across in such papers. Yes the paper referred to by Mr Rowlands, describing the CNEP study, is about facts - one inescapable fact (peer reviewed or not) is that it says cerebral safety research was done before the study started - it wasn't and this is a false claim - which Ivor Rowlands ought to have been able to spot - so should the peer reviewers. It is not a trivial matter - and here I depart from the facts to offer an opinion that it was critical safety issue. No one is addressing this - except the parents and myself. Tell me that putting a false claim in a bioscientific paper is immaterial - or that the substantive matter is trivial but please do not keep ignoring it - it will not go away. Then in respect of the statistical scoring sustem - untested but crucial to deciding if the trial should be halted - if the scoring system and the triangular decision algorithm were so perfect why did the trial stop in Queen Charlotte's - some facts please. Mr and Mrs Henshall have explained how a child dying during the study was given a higher score than a child surviving with brain damage - what kind of scoring system is this? Then I think crucially there is the matter of the identity of the experts who devised the scoring system - six paediatricians and a statistician - tell me please that they were not the same six paediatricians and statistician who ran the trial and authored the report - not possible surely? But tell us who they are - it is not fair to the parents to keep their names a secret.
Repulsive distortions and overreactions 4 October 2000
Peter Morrell, Hon Research Associate, History of Medicine Staffordshire University Send response to journal: Re: Repulsive distortions and overreactions	Sir, I am shocked and disgusted at the unwarranted ferocity of Wheatley’s [1] self-righteous histrionics. Clearly, the only mouth that is ‘foaming with dramatic outrage’ seems to be his own. How anything in previous letters can remotely justify such diatribe from Wheatley, beggars belief. They are such repulsive distortions, it would be an injustice to give them the oxygen of any further discussion. BMJ claims not to publish material that is inflammatory, defamatory and adds nothing to a debate. This letter should not have been published. It contravenes all three. They read like the sad ramblings of a deranged mind. While most emails on this subject were “calm and measured replies” Wheatley's bears little resemblance to what was actually stated, and clearly demonstrates considerable anger and outrage. Why? The medical profession deserves not a molecule of compassion - it is merely reaping what it has sown. Pity does even come into the picture. We are right to be very suspicious of people like Wheatley, who can overreact in this melodramatic fashion, to what were very mild, intelligent and carefully-reasoned criticisms of medical facts. What motivates a professional man to behave in this weird fashion? We can be sure it is entirely contrived and tactical. Any threat to money, power and influence can motivate a fit of such strange foolishness. Meanwhile, reaching for his gun to shoot himself in the foot yet again, Hopkins [2] prefers to trivialise and poke fun at the valid, “calm and measured” points that have been advanced against the medical profession, the like of which he would probably defend to the death if asked to do so. Are they hiding something or just standing shoulder to shoulder in defence of their poor brothers by closing ranks? Any sober and sustained perusal of this type of insane language and over-the-top reaction, reveals much that is wrong with the profession more generally, and which Wheatley claims to represent. What self-respecting professional person could publicly behave in this absurd and grotesque manner without reproach, other than someone spawned by and steeped in a deeply entrenched, self-righteous and unquestioned professional arrogance and monopolistic domination of an occupational field? Medicine, law and the Church have all enjoyed that type of high status. Yet, no legal or clerical person who would dare or dream of behaving in this insane fashion in public. Who, one wonders, is he trying to impress with this dazzling display of feigned outrage? The reaction is totally out of all proportion to anything that has been stated in previous emails. The points I have previously made mostly regard the nature of the duties all professionals have towards the people they serve. There is undoubtedly a 150 year backlog of arrogance and incompetence that modern medics have inherited and which is now swollen like a dam set to burst. Unfortunately, for Wheatley, that singular fact cannot be laid at my door, nor that of Brian Morgan. That medicine has failed to deal with this backlog and mend its ways, modernise, make itself more user-friendly and accountable, more open to public scrutiny, rid itself of arrogance, etc, is also, while comment-worthy, once again, “not my fault, guv’nor”. That UK medicine has signally failed in 150 years to "grasp that nettle", is probably why we see all this mess today. If they had not been so arrogant and monopolistic and been left by successive governments, to manage their own affairs, largely unscrutinised, then, arguably, this mess would not now be coming to fruition. There is doubtless much more pain to come, and much more ‘dead wood’ still to be cleared from the living tree of medicine. It is clearly a very painful process, but also a very necessary one. I hope more sober, detached and neutral persons will read all these emails and compare the vitriolic and hateful drivel poured forth by Wheatley, with my own detached and eloquent, mild and reasoned composition, which was assuredly “calm and measured” by comparison. And draw their own conclusions. The power dynamics of a profession are centrally important to this discussion. It is highly relevant how the medically qualified have tended to conduct themselves in dealing with others and in their social and professional interactions. This may well seem to be some ‘dry academic matter’ to Wheatley, but in considering the way the words ‘professional arrogance’ crop up with such amazing regularity, this signals a real cancer at the heart of medicine. And to try and argue otherwise is certainly to behave like a ‘medical ostrich’. There seems little doubt that an excess of science and a deficiency of social skills and ethics has contributed to forming that unfortunate recipe which has caused these recent disasters. I make no apology for alluding to this in my previous email. The parallels, therefore, between some medical professionals, some police officers and some politicians is a valid one and they exemplify certain aspects of social theory, of no interest to the likes of Wheatley, but also confirm his manifest bereftness of such social skills. Public scrutiny of medical practitioners appears to need tightening and the profession has been for too long accountable to no-one but its own. If Wheatley is seriously suggesting to BMJ readers as a sound and reasoned [dare I say sober?] appraisal of this matter, that the medical profession can draw no conclusions about itself from these sorry events, or that the public still have no right whatever to judge them by their own actions, then he is of course inhabiting precisely the type of fantasy realm to which he would consign the likes of anyone who dares to mouth even the mildest criticism of the medical profession. He stands as an utter disgrace to that profession if he genuinely holds such a view, precisely because he demonstrates the same resolute and arrogant indifference to the people who this profession serves. That alone makes him unworthy, and places him beyond reasoned argument and thus bound and gagged into the madhouse of contempt. One imagines that even many of his colleagues now find him a contemptible and tiresome embarrassment. This is the same arrogance which is pointed to every time these examples of medical incompetence and cover-up reach the newspapers. I repeat the sentiment I expressed before – many see this as the root cause of the current problems facing the entire profession, and for which many will confidently predict further sustained condemnation until it reforms itself, surrenders to greater public scrutiny and starts behaving more decently. The medical profession has been brought into painful disarray by such events and needs to pull itself together. But shooting the messengers just because you don’t like the message is not really a viable response. [1] BMJ letter, G Wheatley, Paranoid and Conspiracy-prone, 2 October 2000 [2] BMJ letter, John Hopkins, Moving up the evolutionary ladder, 2 Oct 2000
Fallacious arguments (continued). 4 October 2000
Joseph Watine, Consultant, Eur Clin Chem Hôpital de Rodez, France Send response to journal: Re: Fallacious arguments (continued).	Having read the report written by Hey et al. and all the ensuing e- responses to this report, I still do not clearly understand all this rather complicated mess. Nevertheless, I can see that, once again [2], fallacious arguments were used by some. In addition to the examples already given in another e-response [2], these fallacious arguments include: - argument from authority: the claim that the writer is an expert, and should be trusted; - saying an opponent must be wrong, because if he is right, then bad things would ensue; - assuming that something true in general is true in every possible way; - over-simplifying; - if an argument or arguer has some particular origin, the argument must be right (or wrong); - if you learn the psychological reason why your opponent likes an argument, then he is biased, so his argument must be wrong; - snobbery that very old (or very young) arguments are superior; - ideas from elsewhere are made unwelcome (this is the way we have always done); - arguing that evidence will someday be discovered which will (then) support your point; - getting the audience to cut you slack; - appeal to pity, appeal to sympathy (I did not murder my mother and father with an axe! Please don’t find me guilty; I am suffering enough through being an orphan!); - threats of lawsuit; - etc. Unfortunately, in this case [1], most writers used one or several such arguments their e-responses. If this were to be a contest, I do not precisely know who would be the winner. [1] Edmund Hey, Iain Chalmers, Rod Griffiths, Terence E Stacey, and Joyce Struthers. Investigating allegations of research misconduct: the vital need for due process. Commentary: Response from members of the Griffiths inquiry. BMJ 2000; 321: 752 (and all the ensuing e-responses to this report). [2] http://www.bmj.com/cgi/eletters/321/7259/471.
Wrong end of the stick? 5 October 2000
Joe Kerr Send response to journal: Re: Wrong end of the stick?	I fear two or three of your regular correspondents may be confused. These are meant to be "rapid" and not "rabid responses".
Calm that fevered brow 5 October 2000
G Wheatley, GP Surrey Send response to journal: Re: Calm that fevered brow	I read Mr Morrell’s recent response (4 Oct: Repulsive distortions and overreactions) with some amusement (his thesaurus must be well-thumbed) but also mounting concern over his health. Unless done with extreme care, it must carry a medical danger for anyone to reach such a level of heated invective. As Mr Morrell considers that I should be “bound and gagged into the madhouse of contempt”, I suspect I may have touched a raw nerve. He is not pleased at being accused of engaging in conflict with various groups of society (though he does list those groups himself), but if he is upset by this, I ask him to imagine being accused of causing the death of children by careless neglect or worse - the very accusation he and others make against the unfortunate CNEP researchers, in the face of evidence to the contrary. One of Mr Morrell’s criticisms of doctors is that we are “seemingly incapable of seeing themselves as others see them”. I suggest that this supposed lack of insight can work both ways - that the same can be said of his and other accusations on this site. Readers can judge for themselves whether Mr Morrell’s comments are really “very mild, intelligent and carefully-reasoned criticisms”, or even “a detached and eloquent, mild and reasoned composition”. It is also possible to see their attacks as self-indulgent vilification of carefully chosen targets, and anyone else who thinks differently or gets in the way. Another frequent charge against doctors in the responses of Morrell, Mellor and Morgan is that of arrogance. My Collin’s dictionary defines arrogance as to “show an exaggerated opinion of one’s own importance, merit or ability”. Perhaps Morrell, Mellor and Morgan might consider if any aspects of their own responses might be described as such. Mr Morrell will have to learn to live with those who disagree with him, as his wish to condemn them to “the madhouse of contempt” is fortunately unlikely to come to pass. His demand that responses that upset him should not be published sounds surprisingly like censorship, that others accuse doctors of - I smell here the having of cake and the eating of it. Civilised people should be able to discuss disputed issues in a constructive, objective and professional fashon, in a way intended to bring benefit to all. Discussion is a two way process; you cannot insist that everyone should agree with whatever point of view you put up - unless you are of a totalitarian persuation, agreement has to earned, by reasoned arguement. Others will reply, even if you insist on shouting. Those who engage in highly personalised abuse of Professor Southall, and now myself, should ask themselves now how far this really furthers the interests of children.
As A Parent 5 October 2000
Gloria Brown Send response to journal: Re: As A Parent	As a parent of which two of my Children Joshua and Aaron who were placed into the cnep I would like to state that I was not informed that this was a trial nor was I given any documentation about the trail anI do not understand where they get the idea that the notes of the children were kept in order. In Joshuas notes his gestational ages go form 26,28 to 29 weeks his name goes from Jacob as on the consent form to boy to his right name Joshua if I had signed the consent form for my son to be used in this so called Cnep I would have noticed that his name was wrong. Also as for Sister Teresa Wright she telephoned the Brompton Hospital expressing her concerns for Joshua as she stated over the phone she was unhappy about Joshua as when the tank was open Joshuas blood pressure shot up and his saturations droped she was told to leave Joshua in the Cnep do not worry as this was a transient. I would like to know what gave them the rights if they knew something was wrong to keep Joshua in the Cnep I learnt from the statement that Mr David Southall wrote that Sister Teresa Wright had been fully trained with the use of Cnep well before it came to Stoke well in the case she shpuld have used her own judgement and removed Joshua from this treatment.
Bullies on the web 5 October 2000
John Hopkins, GP Darlington Send response to journal: Re: Bullies on the web	Dear Dr Smith, One doesnt need to agree with either side of the Griffith's enquiry to wonder why, ten years into this, it has not been possible to establish a watertight inquiry to get at the truth (1). If the answer is one of cost then, given some of the things the country is prepared to spend money on, that is not good enough. In an ideal world what might come out of such an inquiry would be a better understanding of the principle of consent and how doctors and patients can share ownership of what is going on, particularly at the leading edge of medicine. It would be unfortunate if this debate were to be hijacked by a particular individual whos postings are qualitatively different from all others, including those of Ms Mellor and Mr Morgan. This individual's postings are concerned not with the BMJ, or with other substantive matters, but instead with knocking the contributions of other respondents. This is often done in highly personal terms and across a wide range of topics. A while ago the idea of 'house rules' for the rapid response was suggested on the basis that those who consistently broke them would be barred. I cannot speak for others but for myself I would like to be able to follow the debate, and learn from those with whom I may not always agree, without also having to read unseemly attacks on myself and other respondents. Yours sincerely, Dr John Hopkins (1) http://www.bmj.com/cgi/eletters/321/7263/752#EL27
Re: Calm that fevered brow 7 October 2000
Penny Mellor, Child Advocate Home 6 Coven Mill Close Coven WV9 5HX Send response to journal: Re: Re: Calm that fevered brow	Doctor Wheatley "methinks the man protesteth too much"! You don't by chance know the good professor personally do you? So near Crawley Hospital and all! Oh well, you have your opinion and you're entitled to that, however you represent a fraction of the population and I am part of the masses, I see things very clearly thank you. I see them clearly because I have the DOCUMENTARY evidence and I can read. I might be a "lay" person, but I know research fraud when it's screaming at me off the pages and medical notes. I use the BMJ because doctors read it, I use the BMJ because I am a patient of those doctors and sometimes they need a helping hand with their sources of information and I use the BMJ because it's a free country (well almost) and I am entitled to put forward rebuttals to publications. Don't forget it was doctors that dragged all this back up not us the "campaigners" or housewives from hell as we are now being called, a label which is particulary pleasing as it implies there's more to us than feather dusters! (God forbid, we can even read now whatever next!) When the medical profession so disregard the wishes of parents and take the lives of our children into their hands using techniques that are purely research, then just what did you expect? That we would remain silent like good little school children, because after all you know best? Mr Morrell is well versed in the history of the wrongdoings by the medical profession and Brian Morgan has spent years researching particular aspects of unethical and UNCONSENTED research on children and both are also entitled to air their evidentially supported points of view. I think this has far more to do with your profession being bought down a peg or two than anything else, you see your status within society eroded and you don't like it one little bit. Sorry but the Internet provided us with medical knowledge that was shrouded in secrecy before now and we've discovered that what you do isn't that clever after all and what some doctors do is down right illegal and you feel threatened and postings here are indicative of that fear. The game's up, the pedestal on which you have all long been allowed to sit upon has crumbled, the mask has been pulled off and we see you for what you are, human beings with all the quirks that other humans have, your profession has it's fair share of killers, rapists, child molestors, drug addicts, alcoholics, thieves, con men etc it's just you all kept it so well hidden, you allowed yourselves to be held up in the way that you have and now you will all take the biggest fall.
Re: Bullies on the web 7 October 2000
Gerard Foxley, retired Send response to journal: Re: Re: Bullies on the web	Editor, I do wish these tiresome doctors would stop whinging and making personal attacks on other readers. If they have nothing intelligent to add to the discussion, then why do they keep sending in all these hateful e- mails? It is not clear who Hopkins is pointing his finger at: Wheatley or himself? Yet none of the many e-mails of Morrell that I have read, for example, have been anything other than intelligent, well-referenced and actually about the subject under discussion. They are usually quite delightful compositions, which is more than can be said for those from Drs Wheatley and Hopkins. G Foxley, retired
Re: Bullies on the web 8 October 2000
Peter Morrell, Hon Research Associate, History of Medicine Staffordshire University Send response to journal: Re: Re: Bullies on the web	Sir, Bullies on the web? Is he serious? Another example of Hopkins’ unfortunate use of language, perhaps. I am a very unlikely bully. I have checked many of my emails to BMJ in the last 10 months and I can categorically refute the claim by Hopkins that I have been ‘knocking the respondent’. In 99.99% of my emails, I have sought to intelligently discuss the substance of an article that has appeared in BMJ, and in only a very small minority of cases, have I even mentioned a respondent, let alone ‘badmouthed’ them. When that has happened it has always been in response to the same type of ‘ad hominem’ behaviour from someone else. The evidence simply is not there for what Hopkins says. If it were then I would gladly admit it. I would therefore ask Hopkins to have the good grace to withdraw his claim and apologise for the intended slur he made. I also stand by the previous remarks I made. It is trivialising a very serious matter to use words like Okey dokey and Speaker’s corner when speaking about child deaths. Maybe Dr Hopkins would like me to ring one of the Stoke parents involved and ask them what they think of his emails. I have a phone number here. This must give a very bad impression of doctors to see them speaking in such terms. In a previous email, he actually claimed he knew nothing about Professor Southall’s work. For purposes of clarification, I would merely add that in all my emails I try to make intelligent points about the article in question. Admittedly, my views are more historical, sociological and philosophical, rather than clinical, but I think I have made many useful points. This statement is easily confirmed by reading them. I am happy to be judged by the contributions I make. Those articles I have nothing to say about I stay silent about. That is more than can be said for some respondents who insist on ‘muscling in’ on discussions about which they know nothing, end up by mouthing inanities, and thus irritate other readers. Can we please now get back to discussions and leave behind these personal attacks?
What is the rapid response for ? 8 October 2000
John Hopkins, GP Darlington Send response to journal: Re: What is the rapid response for ?	Dear Dr Smith, I am sorry that Gerard Foxley is irritated by my mails. I agree with him that there is a lot of hate floating around parts of the rapid response facility, which is a pity. The rapid response's credibility depends on it being seen as a forum for balanced international debate. That is nowhere more important than on issues around the accountability of the medical profession. If it becomes used as an outlet for the expression of emnity that will benefit no-one. For most doctors, life is complicated enough without battles in cyberspace ! John Hopkins
So little value and respect for children 8 October 2000
Charles Pragnell, Social Care Consultant (Children and Families) Freelance Send response to journal: Re: So little value and respect for children	My major concerns in these matters are for the 28 children who are reported to have died during the CNEP medical experiments, the several others who suffered brain injury, and others who were directly caused harm by the experimental equipment. Although medical correspondents and researchers express concerns that children may not `benefit' from their research in the future if more stringent controls are applied to medical research activities, I can find little in their writings (or in those of Hey and Chalmers) which in any way shows regret or remorse that these children have suffered such appalling deaths and injuries, and also so little in the way of sympathy for the parents and relatives. In fact some medical correspondents seem now to want to vilify those parents and thereby add insult to the injury they have already suffered. I find however in the writings of the medical correspondents and researchers a great deal of defensiveness of the reputation of professional colleagues and others, of their own research activities. Self -interest is a powerful motivator, especially where future reputations, social standing, professional approbation, and not least large amounts of funding, may be at risk. I am not opposed to research, per se, as I have done a great deal of research myself (not I would add on human guinea pigs) but it does appear that medical research has now become driven by the large sums of money available for investment in medical research and for the professional aggrandisements of the medical researchers. If Griffiths achieves nothing else, it must be that if just one child dies or is seriously harmed during any form of medical research, then such medical research project is immediately suspended until a comprehensive, scientifically and legally based inquiry has been held into the causes of the child's death or injuries. The lives of 28 children appear to have been of little value to the medical profession and the serious harm to others has been of so little concern, it is to be hoped that their suffering may at least result in future children being protected from such Iatrogenic Child Abuse.
The Griffiths Inquiry into research in Stoke on Trent failed to use due process 9 October 2000
Edmund Hey, Retired paediatrician, and Director, UK Cochrane Centre , Iain Chalmers Send response to journal: Re: The Griffiths Inquiry into research in Stoke on Trent failed to use due process	Many of those who have contributed to your correspondence columns have missed the point of our article. This was not to say whether the CNEP trial was well conducted, but whether the Griffiths Inquiry was well conducted. It is clear that the Griffiths Inquiry was not well conducted. Had it been, the report of the Inquiry would not contain the factual errors it does contain. Others apparently share our conclusion. Jeremy Laurance’s article in the 22 September issue of The Independent states that “Health department officials are known to have had strong reservations about the quality of the (Griffiths) report” (1). We have not concluded that there were no irregularities in the way the CNEP study was undertaken. We could not possibly reach such a conclusion without even knowing what criticisms some families raised with the panel, or examining relevant papers to which we have not had access. We have seen documents that some others have not seen; others have seen documents that we have not seen. What remains extraordinary is that the Griffiths panel apparently never sought, let alone examined, many of the relevant documents. Griffiths et al. say they still do not understand why the Stoke clinicians never offered them some of the documents to which we referred, but they knew that NHS Trust managers had asked the researchers not to hand over some relevant documentation, and the Panel should have acknowledged this openly in their commentary on our article (2). More fundamentally, however, like us, the clinicians in Stoke did not know, except in the most general terms, what concerns parents had raised with the panel about the conduct of the CNEP trial. People cannot be expected to defend themselves until they know what they have been accused of. Many of the factual errors in the Griffiths report could have been avoided had the Panel invited those they criticised to comment on a draft of the report, as was done, for example, before publication of the report of the Ritchie Inquiry into the work of the disgraced gynaecologist, Rodney Ledward (3). It is easy to understand the frustration of families who still feel they have not been told what went on in the CNEP trial, four years after some of them raised concerns about its conduct. Many of your correspondents have chided the medical profession with arrogance and secrecy in these matters. Everyone now demands public accountability. Indeed, this was the main point made in the editorial by Richard Smith that accompanied our article. For the record, we have seen correspondence showing that, years ago, the Stoke clinicians wanted to meet with the parents who had first raised these concerns, but NHS trust managers would not allow them to. Perhaps it is NHS managers who need to heed the words attributed to Lord Hunt, Under Secretary of State for Health, when commenting on our article: “The NHS belongs to the public who have a right to know what goes on in it”.(4) Until there are proper 'ground rules' for the conduct of inquiries of this sort nobody is going to receive much justice. Some parents clearly feel that justice has still not been done to them or their children. Equally, many of the doctors and nurses in Stoke who tried to provide care for these children, and to find ways of improving the care of all vulnerable preterm babies, also feel that their efforts have been criticised unjustly. Others, not as directly involved, are confused by partial information and continued lack of transparency. Consensus has been sought and reached on the elements needed for the conduct and reporting of some other forms of research. The CONSORT statement is one good example (5). The obvious inadequacies of the Griffiths inquiry and report make it abundantly clear that consensus is urgently required on how official inquiries should be conducted and reported. Until that happens, they are unlikely to serve the interests of those using the NHS, let alone those working in the service. References 1. Laurance J. Top doctors hit back at 'witch hunt' inquiries. The Independent 22 September 2000, p 10. 2. Griffiths R, Stacey T, Struthers J. Commentary: Response from members of the Griffiths inquiry. BMJ 2000;321:755-6. 3. NHS Executive. Report of the Inquiry into quality and practice within the National Health Service arising from the actions of Rodney Ledward (Chair J. Ritchie), 2000. 4. Blackhurst D. Southall criticised by CNEP report author. The Sentinel, 23 September 2000. 5. Begg C, Cho M, Eastwood S, et al. Improving the quality of reporting of randomized controlled trials. The CONSORT statement. JAMA 1996;276:637-639.
Shouting at an empty room 9 October 2000
John Hopkins, General Practitioner Darlington Send response to journal: Re: Shouting at an empty room	Dear Dr Smith, This correspondence has perhaps run its course, perhaps I can close my contribution by responding to P Morrell. My original posting " Speakers Corner" was a serious proposal to separate comment on routine BMJ papers from more polemical submissions. Some of those close to the Griffiths Inquiry accepted this as a debating point and there followed constructive exchanges on reconciliation, consent and the background to the Inquiry. The title "Okey Dokey" was intended to lighten what has become a chillingly hostile debate. The content of this posting was anything but trivial however and, in the week the Human Rights Act became law, it concerned the issue of where justice can and cannot be found. Mellor's posting on Medical Ostriches mischievously misrepresented these points and went on to allege that medical practitioners are indifferent to the suffering of children. As the medical practitioner named eight times in this posting I found these remarks deeply offensive. At least one other doctor seems to have shared this view. In responding to Dr Wheatley's posting, Mellor talks about the sad ramblings of a deranged mind and describes medical professionals as arrogant, absurd and insane. If Mellor and Mr Foxley consider this to be intelligent and well referenced comment I should be interested to what, in their opinion, constitutes invective. As to "tiresome doctors", it should perhaps be pointed out that the BMJ is written for doctors and its credibility, not least among advertisers, is based on the assumption that it is read by doctors. The rapid response is a bold and imaginative attempt to bridge the gap between doctors and the public. That can only be a good thing (1). However, if that wider access is abused then doctors will inevitably avoid those parts of the journal where they know they are going to be traduced. To the extent that it hasnt already happened Morrell and others may find themselves shouting at an empty room. Yours sincerely, Dr John Hopkins (1) Hopkins J Could the Internet become a forum for public debate on healthcare quality and funding. Br J Healthcare Computing Info Management 2000: 17(4): 29-30
Re: Bullies on the web 9 October 2000
Ian Nesbitt, SpR Anaesthesia Newcastle Send response to journal: Re: Re: Bullies on the web	At the risk of perpetuating the personal nature of recent correspondence, and of attracting his vitriol upon my own writings, I would take issue with some of Mr Morrells statements. He describes his writings as: “detached and eloquent, mild and reasoned composition”. Indeed, Foxley feels these are “delightful compositions”. Examples of such delightful pieces include personal attacks such as: “repulsive distortions… they read like the sad ramblings of a deranged mind…insane language” “spawned by and steeped in deeply entrenched self-righteous and unquestioned professional arrogance and monopolistic domination of an occupational field” “the vitriolic and hateful drivel poured forth” “150 year backlog of arrogance and incompetence that modern medics have inherited” (posted 4th October) PM complains that Kumar patronises (5th October2000), yet his whole posting of 23rd September is both patronising and arrogant. As for mouthing inanities and irritating other readers: “The infinitely more artistic Celts, always innately superior to the English in art, music and literature, and tirelessly creative, nevertheless have never boasted of this but simply let their natural talents shine out, like a light they cannot hide. Consider Yeats, Augustus John, Swift, Berkeley, Dylan Thomas, Shaw, James Galway, Michael Flatley, etc, etc.” (posting of 17th September). This is simply anti-English racism. (sorry- eloquent composition). To claim that the Celts are a “Largely sweet-natured people who do not elevate themselves above others, or snootily look down on the less fortunate, like the English do, but who help them out as best they can according to the sentiments of true Christian charity, with which they seem more generously endowed than the English.”(posting of 17th September) is rose-tinted nonsense: I grew up in Ulster and am glad not to experience the effects of “sweet-natured, artistic” bombers here in England. On the simple matter of facts, contrary to his statement, Morrell does actually name respondents in the vast majority of his recent correspondence. I would also like to see less of the personal attack in these columns, but cannot let Mr Morrell shout loud and long without some reply: perhaps it is he who should apologise? Conflict of Interest: shared penchant for soapboxes!
Re: The Griffiths Inquiry into research in Stoke on Trent failed to use due process 10 October 2000
Brian Morgan, Freelance Journalist Cardiff Send response to journal: Re: Re: The Griffiths Inquiry into research in Stoke on Trent failed to use due process	Ivor Rowlands says: 'I became interested in the human rights and welfare of the NHS aspects of this issue purely as a reader of The Independent whose coverage has been particularly deplorable - purely sensational and not at all concerned with the damage it has wrought.' Hey and Chalmers, on the other hand rely on unattributed hearsay evidence from the health editor of the same newspaper: 'Jeremy Laurance’s article in the 22 September issue of The Independent states that “Health department officials are known to have had strong reservations about the quality of the (Griffiths) report”' Is the Independent deplorable, sensational, not concerned with the damage it has wrought, or is it instead a reliable source of information - make your mind up? Conflict of interest: freelance contributor to the Independent and other papers, source of numerous exclusives - including breaking national news about the MSBP controversy, CNEP scandal and the suspension of Professor Southall and Martin Samuels from North Staffs Hospital - and more to come - keep your eyes and your options open I would say.
Re: Re: Reconciliation and consent 11 October 2000
Mark Cotton, Consultant Physician Airedale General Hospital Send response to journal: Re: Re: Re: Reconciliation and consent	I believe there are elements of the 'two cultures' that trouble us in this discussion. I think the post mortem picture of injuries is a good example. Should the post mortem findings be recorded? I think that without explicitly mentioning this in a consent form it is reasonable to assume a report will be produced of the post mortem. 'A picture is worth a thousand words', is a picture so very different from a written description that it requires explicit informed consent if it is forming part of the record? I did not think so, but perhaps I am wrong. If this is the case then the consent forms for many examinations need to be changed because many investigations X-rays, endoscopies, ultrasound result in reports with written and photographic images. There are many unpleasant things one does as a doctor, I do not regard myself as 'sick' for doing them. Recording these things is part of the patient record. The issue of consent for publication or teaching is another question. While I do not want to get caught in the press vs. medics debate there seems to be a view that journalists take that consent is not needed for publication of words or pictures when in the public interest, surely all scientific reports. The medical profession in this instance takes a stricter view and requires consent for identifiable data (including pictures) to be published.
Re: "Doctors -v- Journalists" 12 October 2000
Paul Davison, Senior House Officer Leicester Send response to journal: Re: Re: "Doctors -v- Journalists"	While not really at all relevant to the original title, I feel that journalists as a profession did themselves a great disservice as a result of the wholly inaccurate reporting during the so-called "Do Not Resuscitate" scandal, when no research whatsoever appeared to have been undertaken to learn about cardiac arrest and cardiopulmonary resuscitation before printing stories with wild abandon. "Not treating in the event of a heart attack or stroke" was how DNR was interpreted by The Sun, The Daily Mail and the BBC to name a few examples. Whilst attempts to make the workings of the medical profession and research more transparent can only be commended, creating an ethos where all doctors are made out to be self-serving, uncaring and unable to care about the welfare of their patients is disappointing and destructive. The use of emotive prose, such as when describing photographs of dead babies taken at post-mortem, is a little misleading. Is it also immoral to take photographs of a freshly murdered corpse at the scene of a crime without the relatives' consent? I've not yet heard apologies from the journalists concerned with publishing the inaccurate stories about DNR - the damage and fear caused to our patients by this irresponsibility was far reaching...
Re: Re: "Doctors -v- Journalists" 12 October 2000
Brian Morgan, Freelance Journalist Cardiff Send response to journal: Re: Re: Re: "Doctors -v- Journalists"	Dr Davison is right to say this is not relevant to the substantive issues, and I wonder therefore why his response was published. However, as it has been, may I say that this journalist contributed nothing to the press or TV in respect of DNR - though if asked I do have a number of harrowing personal stories of such cases, where DNR has been written into nursing notes without the knowledge of the individual or relatives and patients have died without resuscitation being attempted. I am not confused at all as to what the meaning of this is and in the cases I have gathered there is ample information. As for the photograph of the dead baby from the CNEP trial - I don't believe anyone has criticised researchers for taking photographs - the more photographs the better as far as I am concerned. It is (a) not telling the parents about the baby's injuries (b) not telling them photographs exist (c) putting the photographs in an academic report which is available for the public to read without telling them and (d) the photographs ending up in a national Sunday tabloid without the foreknowledge of the parents, which is so wrong - and sick - there I've said it again. Please excuse me being so emotive - try speaking to some the parents and remain unemotional. Why don't you try it sometime? You just don't get it do you - any of you. You have this idee fixe that anything doctors chose to do is OK - and none of us outsiders have any right questioning what you get up to. Well as the great Bob said: 'The times they are a'changing' - you'd better believe it..
Re: The Griffiths Inquiry into research in Stoke on Trent failed to use due process 17 October 2000
Brian Morgan, Freelance Journalist Cardiff Send response to journal: Re: Re: The Griffiths Inquiry into research in Stoke on Trent failed to use due process	Hey and Chalmers clarification of their position regarding the CNEP trial is welcome. They say: "We have not concluded that there were no irregularities in the way the CNEP study was undertaken." However there was one further clarification which Dr Iain Chalmers could have offered, indeed might have thought helpful to declare as a conflict of interest, perhaps even have drawn to the attention of the MDU when reviewing this sad business, which is that international collaborators with the Cochrane Centre, in Oxford, are very likely going to review the CNEP study as part of important ongoing updating of clinical interventions - unless they decide to exclude it altogether. For example, a recent Cochrane Library review of Continuous distending pressure for respiratory distress syndrome in preterm infants, 1, omitted the Queen Charlotte's/North Staffs CNEP study, despite a report having been avialable since 1996, saying that this study was "awaiting assessment". Dr Cochrane's lively criticism of the Griffiths Inquiry will I am sure not influence the neonatal editorial group responsible for this aspect of Cochrane reviews. I hope it doesn't prejudice them against it. Reference 1 Ho JJ, Subramaniam P, Henderson-Smart DJ, Davis PG. Continuou distending pressure for respiratory distress syndrome in preterm infants (Cochrane Review). In: The Cochrane Library, Issue 4, 2000. Oxford: Update Software.
Re: Re: Re: "Doctors -v- Journalists" 17 October 2000
Mark Cotton, Consultant Physician Airedale General Hospital Send response to journal: Re: Re: Re: Re: "Doctors -v- Journalists"	Mr. Morgan's letter is helpful because in it he has described clear problems that can be learnt from. In general it would seem proper that parents be informed of the findings of the post mortem. I assume the post mortem was not a coroner's post mortem, because when this is the case doctors are often told the findings are confidential and can not be disclosed to relatives. I think that this is clearly wrong, but change depends on the legal system not the medical profession. The question about whether parents and patients need to be explicitly told about the existence of image records is important, as these are produced from many investigations, some clear general policy is needed. Publication of images is clearly another important issue, should this only require informed consent where the image allows possible identification of the individual, or should all images require consent even micrographs? The publication of photographs in a newspaper without agreement of the parents would seem wrong, but criticism here would seem to be best directed at the editor, I was under the impression that photographs of minors should only be reproduced with guardians consent. (I am afraid I do not know the details so I have generalised the issues, this is not intended to diminish the particular case.)
Re: Re: Re: Re: "Doctors -v- Journalists" 19 October 2000
Brian Morgan, Freelance Journalist Cardiff Send response to journal: Re: Re: Re: Re: Re: "Doctors -v- Journalists"	In the way I have observed scientific correspondents often beginning their responses to papers or letters, intending to tear strips off later, but being so polite to begin with, may I say how kind Dr Cotton has been - to say that I have described problems from which one can learn. However, the child in question was dead, so the question of parental consent does not arise in any formal sense - I was raising an ethical question - but in respect of consent for publication - here I believe I am on strong ground as a journalist, photographer and member of my union's Freelance Industrial Council, which frequently discusses matters connected with the Copyright Designs and Patents Act 1988. What the Sunday Mirror did when publishing the photograph of the baby which died in the CNEP trial at Queen Charlotte's was to breach the rights of the photographer if a freelance or his or her employer if a staff member. The space taken up by the photographs would entitle the owner of the rights to several hundreds of pounds as a fee for reproduction, and in addition, if published wthout consent to further payments in damages. The report from which copies of the photograph were taken is clearly marked as copyright, as I can testify. The fee could of course be donated to an appropriate charity. Perhaps the copyright owner would step forward and claim his or her fee and damages, and name a charity as recipient.
Re: The whole truth 20 October 2000
E Dunn, Parent Send response to journal: Re: Re: The whole truth	I'd like to respond to this to offer another view for the benefit of those who feel that the examples given in 'The Whole Truth' are fair comment on how unfairly things were investigated and used against Professor Southall and his work. I was particularly drawn to, 'this carefully phrased statement is - while technically true - deeply misleading. It leads the reader to believe that I would not let the panel have the log when they know perfectly well, because it is in the transcript of the interview I underwent on July 23 1999, that the Trust asked me not to give them the log. Such half truths can be very damaging. It is time the whole truth came out'. Such truths can indeed be very damaging and I am pleased to see that this is acknowledged as this can apply to many situations, including those between Doctor and patient. Let me offer the following scenario, one of many possibilities and variations. A child is on a home monitor, data is collected but the hospital refuse the data on numerous occasions and when accepted, the parents are told that the machinery was faulty and therefore the data was not recorded. The parents are unhappy with the situation, they complain to those concerned and others, seek alternative help and when this is discovered the parents are accused of fabricating and causing the childs problems, a summary of the reasons being that they had complained and sought help elsewhere and had not forwarded the data to prove that the problems were genuine when they had been given every opportunity to do so. Despite the parents protests that this was not so, they are then threatened with removal of the child if they seek help elsewhere again and claim that there is something still wrong with the child, be it the same problem or a new one. The result of the lack of 'The whole truth' in a scenario such as this or anything similar is that the child or children in a family that has been put in this situation will not recieve proper medical care in the future due to the parents lack of trust in the medical profession, fear of removal of children and belief by other doctors that the parents are fabricating their childrens or indeed their own illnesses in the future due to the label they have been stamped with. These doctors do not of course know 'The whole truth' and can indeed be classed in the same 'readers' category that Professor Southall refers to. They are led to believe one thing by what is written and declared on one side of the picture but the 'The whole truth' could indeed paint a very different picture. I have to agree therefore that half truths can be very damaging, deeply misleading and it is indeed time for 'The whole truth' to come out for Doctors and families alike.
Further errors in Griffiths Report 3 November 2000
Martin Samuels, Consultant Paediatrician / Senior Lecturer in Paediatrics North Staffordshire Send response to journal: Re: Further errors in Griffiths Report	In this correspondence column, Mr Morgan implies that a key medical witness was not telling the truth to the Griffiths Inquiry (Trial by witch hunt, 27 September 2000). He based this on a statement in the Griffiths Report that the Royal Borough of Kensington and Chelsea’s Area Child Protection Committee (ACPC) agreed the protocol for the use of covert video surveillance (CVS), which Professor Griffiths informs Mr Morgan was accepted in good faith from a witness in his inquiry. Mr Morgan quoted a letter from the ACPC dated July 2000, which stated that the ACPC minutes contained no record of any consideration or agreement to the use of CVS as a tool for establishing whether family members were involved in causing deliberate harm to children. Mr Morgan’s implication is clearly directed at either Professor Southall or myself, and is an example of how the truth may be manipulated. Professor Southall and I never claimed the protocol for the use of CVS was agreed by the ACPC in London. This can be confirmed by examination of the minutes of our interviews with the Griffiths panel. The correct information is that the protocol for the use of CVS at the Royal Brompton Hospital was agreed on a multi-agency basis. This included multi-agency discussions, including involvement of a principal social worker and legal advice. The protocol was about to be submitted to the ACPC, but our departmental move to North Staffordshire precluded the need for this. The draft protocol became the basis for the Staffordshire ACPC protocol, which was circulated by the Department of Health in 1994 to all Area Child Protection Committees. Martin Samuels