GENERAL MEDICAL COUNCIL
FITNESS TO PRACTISE PANEL (MISCONDUCT)
Tuesday 21 August 2007
Regents Place, 350 Euston Road, London NW1 3JN
Chairman: Dr Surendra Kumar, MB BS FRCGP
Panel Members: Mrs Sylvia Dean
Ms Wendy Golding
Dr Parimala Moodley
Dr Stephen Webster
Legal Assessor: Mr Nigel Seed QC
WAKEFIELD, Dr Andrew Jeremy
WALKER-SMITH, Professor John Angus
MURCH, Professor Simon Harry
(Transcript of the shorthand notes of T. A. Reed & Co.
Tel No: 01992 465900)
A P P E A R A N C E S
MS SALLY SMITH QC and MR CHRIS MELLOR and MR OWAIN THOMAS of counsel, instructed by Messrs Field Fisher Waterhouse, solicitors, appeared on behalf of the General Medical Council.
MR KIERAN COONAN QC and MR NEIL SHELDON of counsel, instructed by Messrs RadcliffesLeBrasseur, Solicitors, appeared on behalf of Dr Wakefield, who was present.
MR STEPHEN MILLER QC and MS ANDREA LINDSAY-STRUGO of counsel, instructed by Messrs Eastwoods, Solicitors, appeared on behalf of Professor Walker-Smith, who was present.
MR ADRIAN HOPKINS QC and MR RICHARD PARTRIDGE of counsel, instructed by Messrs Berrymans, Solicitors, appeared on behalf of Professor Murch, who was present.
I N D E X
DAVID HOWARD CASSON, continued
Cross-examined by MR MILLER, continued 1
Cross-examined by MR HOPKINS 67
THE CHAIRMAN: Good morning everyone. Mr Miller.
DR CASSON, continued
Cross examined by MR MILLER, continued
MR MILLER: I am going to go through, in more detail, some all the cases we went through yesterday trying to deal with your involvement in them and your knowledge of the cases in a little more detail. It is going to be a slightly tedious operation, but you can at least help us with the sequence of events in which you are involved.
Before I deal with the first case, can I ask you about the approach for a hospital where a child is referred, either by general practitioner or by another consultant, and how the system works. I think it is important to get everybody’s position in context. In relation to any child who is sent to the hospital, a set of notes would be generated dealing with the first referral
Q however that came about. You may have a referral letter from whoever has referred the child, and then if there is an outpatient clinic appointment that would generate a note of what happened or what was found during that out patient clinic appointment and, in most cases, a letter to the general practitioner or the referring doctor to say what the outcome was?
Q The sequence would go on after that. If it was likely to lead to an admission at some time, the letter would explain to the referring doctor that that was what was going to happen and a copy of the letter would remain in the child’s notes?
Q You might be asked, and we have examples of it in some of the cases, to write a letter to the parents – the consultant having written to the general practitioner – telling them of an appointment for them to come in or an admission that has been arranged for the child to come in.
A Yes, they would probably also receive a letter from the hospital admissions department as well.
Q I think there are two instances of it where you have written and said “Come in”, but that may just be courtesy, I do not know. They obviously had a formal communication from the hospital in the notes. If, as appears to be the case in quite a number of these children, that you were the person who clerked the patient in, admitted the patient
Q you would have the notes in front of you with the history as it had been told earlier, and you would make your admission note with those notes in front of you, supplemented by what the parents told you at the time of admission?
A Yes. There may have been times when the notes were not available at that point.
Q The good practice would be to have the notes available because the history of how the child got there would be in the notes?
Q Again, as the child remained, in some cases, in fact most of these cases, for a period of several days, the different investigations would generate either a note or a report about what had been found which again would remain in the notes.
Q By the time you came to write your discharge summary, you would have an accumulation of detail in the notes with which to make that discharge summary?
Q Because we have seen, in a number of these cases, they are really quite detailed documents which set out not only what has happened while the child has been in hospital, but summarised the earlier background history as well?
Q You would have had the results of investigations, the histology meeting note if there was one, and the histology report before you wrote the discharge summary?
Q You may not, probably do not, have recall of any of these patients individually – we are talking about more than ten years ago – but that would accurately describe the system and the material you would have had at the time with which to write what were quite important letters?
Q The second general matter I would like you to deal with is consent forms. Every procedure carried out on a child which could be said to be invasive had to have a consent form signed by the parent?
Q Any child coming in, whatever the procedure, whatever the investigation, if it was invasive, would have to have consent. That was a standard consent form which would be generated for either each individual investigation, or, if they were grouped together, a group of investigations?
Q This would be a standard form as issued by the hospital, presumably?
Q A proforma on which you fill in details?
Q The practice at the Royal Free at the time you were there, in cases where there was a colonoscopy was that, in addition to the consent form for the colonoscopy, there would also be a consent form for the use of additional biopsies.
A Yes. I do not recall whether it was a different consent form.
Q We will look at it when we look at the individual cases. As you described it yesterday, that was, at the time anyway in 1996/1997, for the purpose of getting permission to take extra biopsies for the tissue bank, as you described it, for future use, so not specifically related to the care of a particular child?
A That is correct.
Q You were never asked to obtain any other type of consent when consent was taken for the procedures that were carried out on these children?
A I do not recall taking any notes.
Q We have not seen any in the notes. You did not think to use any other form of consent other than the one, the proforma standard consent, for the investigations that were being carried out?
A No, I did not.
Q Can I ask you to deal with the cases. I am going to start with Child 2, but after that I shall deal with them in numerical order because we have gone through them in chronological already, but I think it is easier to deal with them numerically. You need the Royal Free Hospital notes for Child 2. In most cases I am going to ask you to look at the Royal Free notes because they would be the notes you had seen at the time that you were caring for these children. Do you have those?
A Yes, I do.
Q You will appreciate that there has been a considerable amount of evidence already and the general practice side of the history of these children has already been given by the general practitioners in the case so I am going to confine you to what happened after the child was referred to the Royal Free. We have been through the records, or some of them, with Child 2’s general practitioner and it looks as though he saw a number of different doctors in the years before he came to the Royal Free. It also appears from the evidence that we saw that he saw Professor Walker Smith when we was still at St Bartholomew’s, that is when Professor Walker Smith was still there. I think he was seen for the first time in the Royal Free Hospital at an outpatient clinic on 21 June 1996. Would you have seen him at the same time – did you attend the outpatient clinics of the consultants at the time?
A I would usually have attended but also seeing patients, so the patient load would have been split between whoever was attending the clinic that day. It would generally have been a consultant and another junior doctor, such as myself. If there had been any problem with any patient I had seen, or any concerns, I would always have consulted with the consultant.
Q You may or may not have seen this patient at the time, but you would have been at the clinic, but there was a shared workload for the patients to be seen.
A If I had seen him there would be a clinical note.
Q I am sorry, you and I are relatively close and I can hear what you say, but even though there is amplified sound, you are dropping your voice a little. If you turn to page 159, there is a letter dated 28 June 1996 from Professor Walker Smith to the general petitioner.
A What page, I have a different letter.
Q Page 159. I think there is an additional volume of notes as well. Turn to page 159. Is that a letter to Dr Cartmel of 28 June?
A Yes, it is.
Q He says that he has seen Child 2 in the clinic.
“As you know I first met [the mother] via Dr Andy Wakefield who is concerned with measles immunisation and possible Crohn’s disease. I think Crohn’s disease is unlikely. Dr has the view that there may be some kind of other inflammation which may be a relevant factor in his illness and we now have a programme for investigating children who have an association with autism and a possible reaction to immunisation. I am arranging for [Child 2] to come in for investigation at the end of August.”
This is a letter written in June 1996. I think it is your writing on the letter?
Q “Discussed with Walker Smith” and there is a date 23 August 1996, which is the date of the admission, or prospective date of admission?
A I am not sure what that date refers to, I would have to confirm with the notes.
Q For colonoscopy and Schilling test on admission and it is signed by you?
Q So as far as that was concerned, the plan was that he was to come in for a colonoscopy and Schilling test?
Q Would that have got there following a discussion at the outpatient clinic about what was going to happen to this child do you think?
A I think if the note is dated 23rd of the 8th, it would have recorded a discussion of that date. As I say, I cannot say exactly when that would have been. I am sorry. I cannot tell you exactly what forum that would have been in. It may have been that I was aware of the admission and sought the advice of what was going to be happening – intended for that admission.
Q If we look back at page 151, the discussion was on that day, 28 August, because this is a letter to the parents. This is an example of you writing to the parents.
Q You are writing to the parents that the child is to be admitted to Malcolm Ward on 1 September for colonoscopy and Schilling test, so that obviously repeats the note and suggests that that is the day on which the discussion took place with Professor Walker-Smith.
Q As we saw on other letters yesterday when you were giving your evidence, there is a reference to:
“Any further investigations required will be decided on another occasion following consultation with Dr Wakefield.”
Am I correct in understanding that in effect you are saying to the parents, “If any further investigations were thought necessary they will be decided upon on another occasion”?
A Yes. It may have been that the investigation would be performed during that admission but that a discussion would take place to decide whether further investigations were required.
Q And those further investigations, as we have seen, might involve blood tests, MRI, EEG, lumbar puncture, which we went through yesterday?
A Possibly so.
Q Would you turn to the beginning of the bundle, page 8, please? You do not appear to have dealt with the admission of this child, or at least at this point. The admission note looks to have been made by the consultant Dr Thomson, and it says:
“Admitted for colonoscopy: Schilling test. History of neurological regression. 3 x obstructive jaundice episodes.
Multiple medical input.
Due to see GOS …”
Is that Great Ormond Street Hospital?
Q “ … [for] metabolic workup seen Dr Robert Surtees (James Leonard Department).”
Dr Surtees was a paediatric neurologist at the Great Ormond Street Hospital, was he not?
A I cannot remember his exact title.
Q No, but I think he was at Great Ormond Street?
A Yes. He may have been a neurologist. He may have been a metabolic physician, I am not sure.
Q Then it says:
“Mother reassured about the use of …”
Is that midazolam?
Q “And [something] tomorrow”
Q “Pethidine tomorrow”, so that is in relation to the sedation.
Q “Need to contact GOS with metabolic workup, especially in view of the CSF [examination and investigations] pre [lumbar puncture]”.
MR MILLER: So he appears to be saying that there is a need to contact Great Ormond Street about the metabolic workup and it is in relation to the lumbar puncture.
MS SMITH: This witness cannot answer these questions when he did not write these notes, so it is simply Mr Miller making assumptions about it.
MR MILLER: May I be allowed to conduct my own cross-examination? This witness has indicated that, as one would expect, if he has to deal with the case he will have the notes in front of him at various stages when he has to deal with them, whether it is at the admission stage or whether it is at the time when he writes his discharge summary.
It is wholly artificial for Ms Smith to say that this witness can only give evidence about documents which he actually wrote because he clearly, from the discharge summaries, has the contents of the notes to hand when he makes those discharge summaries. The Council has not chosen to call any other witness who can deal with these hospital notes, and he is the only person who is able to do so, and, frankly, the purpose of this cross-examination is to give a fair, or shall I say a fairer, and more balanced account to this Panel of what happened during this child’s admission and subsequent treatment. This is the only witness to be called who is able to deal with the clinical management of this child at the time that he was in the Royal Free.
Just before I leave that, sir. Very early in this case, we had the slightly surreal picture of a general practitioner giving evidence about correspondence that took place with her successor at a time when the child had left that general practice in order to put before the Panel evidence about what happened later in the course of the child’s illness. I made no objection to that because it was pointed out by counsel for the General Medical Council that that was the only way in which the general practice notes could be placed before the Panel.
We are in a different situation here because what we are talking about is a witness who would have seen these notes at the time (or subsequently) and would have reacted to them, and it is the only way in which this Panel can get a proper account of what happened to each of these children when they were at the Royal Free.
MS SMITH: Sir, I have absolutely no objection at all to Mr Miller doing that. Mr Miller is quite right, we did it with the GPs, we simply read out and said to the GP who was giving evidence, “Is it correct that that is what that note says?” Why I stood up and objected was because, having read out the note he then informed the witness that there was an assumption to be drawn from it, and that is what I object to. It is not because I mind this witness giving any evidence that he thinks fit to give but he cannot possibly say what the assumption to be drawn from someone else’s note is, and we tried very hard not to do that with the GPs but simply to read out letters which they were not involved with and say, “Is it right that that is what the letter said?”
THE CHAIRMAN: Legal Assessor?
THE LEGAL ASSESSOR: The problem may be that for a witness who is not a lawyer, understanding what leading questions are, and perhaps I might just say to Dr Casson, when you are cross-examined, that is when you are asked questions by representatives of the doctors, they can put propositions to you in a way that counsel for the GMC cannot. Because they state what appears to be a fact or make an assumption, you do not have to accept it. If you think what they are saying to you as a proposition is wrong will you please say so, and if when they ask you a question the question is not within your knowledge, will you please say you cannot answer that. Do not feel because a lawyer is putting something to you that you have got to accept it.
MR MILLER: May I say to the Legal Assessor one point? Clearly, we are talking about events that took place 10 years ago. I cannot expect this witness to remember all of the documentation. To the extent that it is in the file, I am going to ask him about documents which lead into his involvement, in order to give the whole of the picture but I cannot expect to remember any of the documents or any of the cases, but it is just to try to get the framework of the investigations that were carried out there, and ultimately to deal with his part in it as he can describe personally but to leave out bits of it, and I will certainly try not to put a proposition which he simply cannot answer. I accept entirely what the learned Legal Assessor has said, and you will see in a moment why I ask about this document, because I want to look at another document which we have not seen in the bundle.
(To the witness) You are caught in the crossfire, Dr Casson, none of this has got anything to do with you or anything you have said or not said, it is just a question of how we deal with the notes.
Can we look at page 152, please? I had been asking you about the document on page 8, which ended by saying, “Need to contact GOS with metabolic workup” and then if you look at page 152, this looks to be a fax, does it not, from Great Ormond Street Hospital, to Dr Thomson, who had written that note, from Dr Surtees, and it says:
“No. of pages (including this one): 3
Lactate, pyruvate, glucose.”
We will look at what happens when we see the results of the test but under the heading “CSF”, are those the types of investigation that were to be carried out on the CSF?
Q With this case and other cases we have seen your notes of the results, but these are what Dr Surtees is saying about what is either going to be or is necessary for the CSF.
A I do not know if that is Dr Surtees’ writing or not.
Q It says “From: Dr Surtees”.
A Or whether the note was made at a later date on the fax sheet, I do not know. I would have to see the contents of the fax itself.
Q There is a fax, that first page, and then there are two pages which follow it, which are a letter dated 23 August 1996 to Dr Hilary Cass, consultant, paediatric disability, which is his own report which has been referred to and in due course referred to again. We will come back to this when we look at your own note when the investigations were carried out. So on the face of it there is a fax from Dr Surtees to Dr Thomson relating to CSF, and CSF can only come from the lumbar puncture, can it not, in this context?
A Yes, in this context.
Q Would you look at page 351 in the same bundle? Just for identification, it is a document which is headed “Investigations for possible degenerative disorders of the CNS”, and it has the patient’s name and date of birth on the top of it, handwritten, does it not?
Q Are you familiar with that document or a document like that?
A I do not recall such a document.
Q Do you see your handwriting on it anywhere?
Q You spoke about protocols yesterday, a book of protocols, I think, that was kept on the ward.
Q What did that book contain? What sort of documents did it contain?
A There were many tests done outwith this study that the department undertook, and each of those required correct procedure and samples being correctly labelled and sent for analysis, so it would have contained information about all the various different tests that were done. That was the main importance of the protocol book on the ward, so the day-to-day management of, and investigations conducted on patients on the ward being investigated.
Q So it would tell you in relation to any procedure that was being carried out how it was to be done and what was to be recorded?
A How it was to be done and where the samples were to be sent, for example.
Q Would you turn to page 15, please? This is a clerking note rather than an admission note, is it not? It is a detailed note which sets out a short history. Is this your writing?
A Yes, it is.
Q The date is 20 September is it?
A I think the date is probably incorrect, I think it is probably 2 September.
Q Again, we looked at this yesterday and I do not want to go through it all again, but you have started off, and we see this repeated in a number of other instances with other children, it is:
“Referred for investigation of ? association between gastrointestinal disease [GI disease] autism/measles. Complaining of developmental delay from around 20 months and hyperactivity. Diarrhoea since 20 months. Intermittent and fluctuating”.
Is that right?
A Intermittent weight fluctuation.
Q Then: “Abdominal pain …”?
A Again, “since 20 months”.
Q Then you take an arrow down from diarrhoea, “appears to lose skills after each episode”, is that right?
Q And that relates back to the diarrhoea?
Q Then you set out a quite detailed history, presumably partly from notes that you had or partly from information that was in the notes, and partly from what you were told by the parents?
A This sort of note would have been made purely in consultation with the parents.
Q So you sit down and they tell you the history up to that point and you write it down?
Q Would you turn to page 18? This looks to be a note that you have written sometime afterwards, after the colonoscopy results have been obtained.
A It is indicated with “ward round”. That clerking would have been with me sitting with the patient and parents and then the “WR” would have been the note I made at or following the ward round.
Q The ward round would be with a consultant coming round and then after that you write your continuous note.
A I would have done a daily ward round for all patients on the ward anyway and there were consultant ward rounds as well. The decisions of the investigation to be taken here would presumably have been after a consultation with one of the consultants.
Q Just before we look at that, can we look back at the page before, the last block of notes on that page. The page unfortunately has been obscured, but it is page 17. It says,
“Presently → has ‘episodes’ every 18/12. Last in April. Last up to 3/52 ? Associated with jaundice + pale stools.”
Then is that “Poor sleep”?
A Poor sleep, yes.
“Increased diarrhoea and screaming”?
Q Then treatment is it “Mixture”?
“From Dr Hunter at Adenbrooke, contains 4 bacteria”.
What does it say underneath that?
A “Crohn’s.” I think Dr Hunter recommended specific dietary intervention for people with Crohn’s which were exclusion diets.
Q So it is Crohn’s which leads to an exclusion diet, the arrow I am talking about?
A The treatment of which was exclusion diet.
Q “I had previously only contained” and then you have a whole list of types of food have you not?
A Yes. This is a record of what the child’s diet would have previously contained.
Q The penultimate line there “other”?
A “Other foods”, I presume, “causes pain”.
Q “Started” and then you have the date there. At the top of the next page,
“Presently being investigated by Dr Hilary Cass”.
Is that right?
Q “Who deals with children with”
A I think it is communication problems.
“At the Wolfson Centre at 905”(sic)?
A Not 905, that is Great Ormond Street.
“Last week→ Dr Surtees at G.O.S (neuro metabolic)”.
A I presume that is his discipline.
“? for metabolic tests”.
Q To some extent, that ties in with what we looked at earlier, the fax from Dr Surtees in relation to CSF and the letter that he wrote to Dr Hilary Cass which followed the fax.
Q Then the ward round note,
“Blood tests → as indicated by list of metabolic disorder”.
What do you mean by that?
A I cannot recall specifically. There must have been a list which indicated what blood tests were required in order to exclude various metabolic disorders.
“Note multiple abnormalities on colonoscopy. Re check anti endomysial Ab”. That is to test for coeliac disease you told us yesterday. Then you went through the rest of those results that needed to be done and the arrangements that had to be made. Again, if you look at the CSF, which is there in the middle of the list, CSF “Cytocines, RT”, reverse transcriptions. What is “PCR”?
A Pulmonary chain reaction.
“Lactate pyruvate glucose”.
Q Where they what were on that list that we saw on the fax from Dr Surtees?
A I do not think the list contained reverse transcription PCR.
Q In that case, lactate, glucose, cytocines and measles antibody?
A I think so, yes.
Q Can I then just ask you to look at Dr Murch’s colonoscopy report which is at page 247. Again, I just want to get it in sequence, Dr Casson. You may or may not have been present when the colonoscopy itself was carried out; you may or may not have assisted Dr Murch. You cannot say and there is no note of it.
A I cannot say, I am not sure.
Q You would obviously have had to have access to it because in due course if you had to write a discharge summary you would draw from the report discussion about it and the same applies to histology reports in order to give the detail to the referring doctor?
A It may have been through discussion.
Q The discussion would have arisen at the time of the meeting on the Friday?
A It may have occurred at any time subsequent to the colonoscopy.
Q This is his report. Then it is indicated that the histology report is to follow. It reads,
“This colonoscopy was performed in the further investigation of disintegrative disorder, and was in fact abnormal.
The rectum showed very minor abnormalities of the vascular pattern, without frank ulceration, friability or contact bleeding. The appearances were largely normal (although the procedure technically difficult) until the ascending colon. One definite aphthoid ulcer was seen near to the hepatic flexure. Towards the caecum there were multiple prominent colonic lymphoid follicles, each with an eryhthematous rim and a central pale swollen core. These were densely aggregated in the caecum. The terminal ileum was also abnormal, showing lymphoid nodular hyperplasia although no ulceration or other abnormality”.
That is as he describes the colonoscopy. Then page 18, this is the next day, your previous note was on the 2nd, this is on the 3rd,
“Schilling Test Kit plus analysis performed by medical physics contact nos ... for Thursday as per protocol”.
Q Then on the next page, page 19, there is a note by another doctor. It is a note for 4 September which is on page 9. Is the order of these notes familiar to you?
A What do you mean by familiar?
Q The fact that it goes in this rather strange order?
A No, they should be found in chronological order.
Q There is a note on page 9 which is your note is it not?
“MRI √ LP √”
Q That means that both of them have been carried out does it?
A I am not sure if they have been carried out or that means that they have been arranged.
Q Then against “LP” you have
“CSF for proteins electrophoresis, lactate/pyruvate/glucose → bld glucose), measles Ab → Nich Chadwick.
A Yes. The fact that it says “Insufficient for cytocines” presumably means that we already had the sample.
Q Then page 264, this is the histology report which would have been generated by one of the pathologists, although it is difficult to identify who it was in this case. This comes from the lab does it not?
A From the Pathology Department, yes.
Q The details of what had been found. Date of receipt is 2 September and the date of the report is 5 September. That is an identification of what has been found under “Macroscopic description” of the tissues samples.
Q Then over the page,
“I These are fragments of small bowel mucosa with mild chronic inflammation within the lamina propria. No granulomas are identified.
II These are fragments of large bowel mucosa with a moderate chronic inflammatory infiltrate within the lamina propria. No granulomas are identified”.
Then sections III, IV and V:
“All these specimens show fragments of large bowel mucosa with patchy increase of chronic inflammatory cells within the lamina propria and occasional prominent lymphoid follicle with a germinal centre within the ascending and transverse colon biopsies. An occasional focus of acute cryptitis is present within the ascending colon specimen and there is mild crypt distortion. No granulomas are identified”.
What did you understand by cryptitis?
A Cryptitis is where there appears to be some inflammatory cells infiltrating into the crypts which are an architectural feature of the biopsy.
Q Section VI,
“This is a fragment of large bowel mucosa with mild chronic inflammation of the lamina propria and very focal cryptitis”.
Then under “Comment”
“The mild patchy generalised increase in inflammatory cells with lymphoid aggregates and follicles is not very specific but could be in keeping with low grade quiescent inflammatory bowel disease”.
There is an initial. It is Dr Quaglia? You may not know that.
A I do not know.
Q That is the report. Then what you have described as the histology meeting, which is at page 14, it is the 13 September histology meeting. Is that right?
Q Page 14 at the bottom, this is your note again and would have followed the discussion between the clinicians and the pathologists about all of the findings that were made during the course of this child’s admission?
Q Again, we went through that yesterday. You noted these meetings and then used that as well as the other material in order to send the discharge summary to the referring doctor?
Q That document is at page 127. This looks as though it is part of the discharge summary. Dr Casson, this document is actually distributed in the first bundle. It looks as though it has been sent by fax. The complete document starts on page 145. This seems to have been spread around and any parts of the letter copied earlier. The full copy is at page 145 is it not?
Q Obviously there were random pages earlier on in the bundle, but this is the complete document. You have seen that document went to a number of people on page 149, including the consultant child psychiatrist, Dr Wozencroft, who was involved we have seen from the general practice side and various other consultants who were mentioned as part of the history which you took from the parents. Is that right?
Q Including Dr Hilary Cass at Great Ormond Street Hospital. This, if I may say so, Doctor, draws everything together. It is a combination of your understanding of the history as taken from the parents, the results that had been obtained, including the colonoscopy and the histology results. Is that right?
Q Ending up with a suggestion to the general practitioner about the way forward. On page 148 we have a plan there. So we can keep an eye on it, in this discharge summary and it is mirrored in quite a lot of the other ones you break down your report into the various aspects which you considered important: history, investigations, colonoscopy, results of the other tests and the histology, so that the general practitioner or the referring doctor knows precisely what has happened at the Royal Free.
Q Is that your aim?
Q You end up on page 148 saying at the end of the heading “Barium meal and follow through”:
“There are still several results awaited. Nevertheless there was a significant finding of patchy inflammation within the colon. The significant of the slightly raised ammonia is uncertain. In view of the colonic inflammation it was decided to treat him with an enteral feeding regime” and you identify what you are going to use “This is a casein based formula with which we have had extremely good results in children with Crohn’s disease”.
Just pausing there, the department would have been well familiar with Crohn’s disease, would it not?
Q Appreciating that you had only been there by that stage for about a year, you are giving there the accepted experience at that department of using that particular type of enteral feeding?
“It requires that he has [the product] alone for 8 weeks. At this time we will consider re introduction of food. We will review him regularly throughout this period and subsequently to assess his progress”.
The plan is to introduce him to enteral feeding and to assess him to see what his response to that is going to be with a view to re introduction to food at a later date?
“With regard to [Child 2] neurological problems an opinion of a neurologist and a child psychiatrist have also been sought. I am sure that they will forward further information to you. We will review [Child 2] in clinic in 2 weeks’ time. As with all children who start on CT3211 enteral feeding regime he will need a repeated colonoscopy after having been on the diet for 8 weeks. We will also need to arrange an upper endoscopy in the near future”.
That you say was standard; if there had been enteral feeding you have to see what the response of the bowel is to it?
A It is standard practice, yes.
Q You are writing really on behalf of the department, are you not, a collective view which has been reached between you and the consultants who have been involved (a) about what has been found and (b) about how to treat it?
A Yes, it is a summary of everything that has gone on and everybody who has taken part in the department, yes.
Q My point is it is not just your own work.
Q You have put it together as a report, but it reflects the input from others within the department?
Q Was it the norm if you discovered some abnormal pathology at colonoscopy, confirmed by histology, that you would try to institute some form of treatment?
A That would depend on a discussion of whether the abnormal pathology note was sufficiently abnormal to merit intervention and that would be in association with the symptoms as described.
Q That would be a decision reached after all investigations had been carried out?
A After sufficient results had been received to make a reasonable assessment of possibly an ongoing disease process.
Q Here it was felt, and you were the mouth piece for it, that the best way forward for this child was enteral feeding, certainly in the short term?
Q In other cases which we have seen and will see, that was not the chosen path. The chosen path was either something to do with constipation, liquid paraffin or lactose or anti-inflammatories of one sort or another?
Q This child came back. The other loose ends were tied up. You may not have been involved in it. You told the general practitioner that there was input required from the child psychiatrist which came in due course later from Dr Berelowitz. I do not know whether you would have seen that. Can you look at page 143, please? This is a report from Dr Berelowitz to Dr Murch dealing with the psychiatric or developmental aspect of this child.
Q When you told the general practitioner that that was awaited, this is what you were expecting?
A That the report was expected, yes.
Q The child came back in for a repeat colonoscopy to assess his response to enteral feeding. It looks as though this was done by Dr Fell. If you look at page 248, it says:
“Examination date 11/11/1996.”
So that would be the right timescale, would it not?
Q And Dr Fell worked within the department?
A Yes, he did.
Q It is a planned follow up colonoscopy:
“Instrument passed to terminal ileum.
FURTHER INVESTIGATIONS: none.
Histology report to follow.”
The report as far as the colonoscopy is concerned:
“Essentially normal colonoscopy to terminal ileum, slightly abnormal vascular pattern in sigmoid, with follicles visible.”
So the significance may have to be explained in due course. The appearance was different from what it had been when the first colonoscopy was carried out.
Q We see at page 123 a letter dated 26 March 1997 from Professor Walker Smith to the school doctor, Dr Maule, reporting the outcome of an outpatient clinic on 26 March 1997. Do you see that, page 124 it is on, I am sorry.
Q We have seen and will see the pattern that, when the child comes back to the outpatient clinic, there is, in most cases, a note of the outpatient clinic followed by a letter from one of the doctors in the clinic to the general practitioner to explain what has happened?
Q Here Professor Walker Smith is saying:
“I was very pleased to see [Child 2] again in the outpatients clinic. When I saw him his behaviour seems to have significantly improved. Previously when he sat in the clinic he has been extremely active, today he was calmer and placid and I was able to examine him.
This change in behaviour was confirmed by his mother who enthusiastically tells me he is much calmer, more receptive, more affectionate and gentle, less destructive and has his long concentration spans. It is important to get some verification of this. I am asking my colleague, Dr Mark Berelowitz, to consider seeing him again at some point. Interestingly, he could not tolerate Sulphasalazine in suspension when colouring and flavouring was added but he is tolerating Sulphasalazine in suspension – 250 mg twice a day. It would seem that this regime together with a dietary regime has led to considerable improvement. His diet has been progressively liberalised and the volume of CT3211 is reducing, although I would still like to reduce it further. Our goal at present would be to get between 500ml to one litre with 24 hours.”
A copy of that to Dr Cartmel.
We moved on from the discharge situation, when it was suggested that enteral feeding, you suggested that enteral feeding, would be tried for a period and reintroduction to food, to the check colonoscopy, repeat colonoscopy performed by Dr Fell. By the time this letter is written, the child is being reintroduced to food and is being treated with anti inflammatories?
A This is a letter from March 1997, so that would have been four months, roughly, after feed was stopped. At that stage children would usually have been on a full normal diet.
Q It looks as though the child is still having partly enteral feeding, is it not, from that letter?
Q But there has been a reintroduction to food, which was what you had in mind when you wrote the discharge summary initially in September?
Q There is nothing hidden here, Dr Casson, just things have moved on and I am trying to take it on beyond to see where we get to while you are still at the hospital. The change has been that, although there is still partly enteral feeding, there is also the introduction of some form of anti inflammatory on a regular basis.
Q Which the child appears to tolerate and a description from Professor Walker Smith anyway, a report, on the behaviour of the child. Just to put this the again in its context, if you turn to the page before, page 123, this is a letter that was written to Dr Berelowitz, the child psychiatrist, saying:
“I was really quite surprised to see the progress [Child 2] has made in his behaviour since he had been commenced on Sulphasalazine. His performance in the clinic room was quite transformed. He was no longer destructive. He was quiet and calm. I was able to examine him without any particular difficulty. This change in behaviour is difficult to assess objectively. I have written to the school authorities to get their opinion. From my own perspective (and that of David Casson, who knew him before) there seems to be a quite dramatic improvement in his behaviour.”
So does it look as though you would have been there at the clinic when this observation was made?
Q And confirmed what is being described there?
Q I am not going to take you to any more of the notes, but the notes show that this child was followed up, continued to be followed up, in the gastroenterology outpatient clinic for a number of years, in fact a number of years after you left the Royal Free. I do not think I need to take you to the individual letters, but we get letters going into this century, I think, where there has been a return to the outpatient clinic and he is seen by various doctors. That is not something you find surprising?
MR MILLER: I would like to turn to Child 1. Can I reassure you we will not take nearly as much time on the remainder, I just want to get the format clear with these children. We do take it at more pace after this. Some will take slightly longer, but you are not going to be here for ever dealing with this.
THE CHAIRMAN: Child Royal Free notes?
MR MILLER: Yes please, sir. Do you have this child’s notes?
A Yes, I do.
Q If you look at page 13 it looks as those this child was seen on 20 June 1996 in the outpatient clinic, Professor Walker Smith’s clinic. I am not going to ask you to read the note, but that is the sort of note that would be written in the outpatient clinic and then followed up by a letter from the Professor to the general practitioner. We see that letter at page 54, a letter dated 21 June 1996 which the Panel has already seen, to the general practitioner who had referred the child and the plan at the bottom would be to see him again in three months’ time:
“If [Mrs 1] feels that it is appropriate we could consider performing endoscopy and further assessments neurologically and psychologically on of his autism to explain the possible link between measles immunisation, bowel inflammation and autism.”
On 21 July 1996, I think he was admitted to the Royal Free hospital. You were the doctor responsible for admitting him at page 9. Again, it is difficult to read, but I think it is your admission or clerking note.
Q Dated 21 July 1996:
“Referred for work up of ? relation between autism/measles/IBD.”
Inflammatory bowel disease, and that was your understanding of the reason for him being admitted.
“Complaining of classical autism”.
These are actually bullet points rather than knows?
A Bullet points, yes. Each presenting complaint would have been detailed before going into more detail.
Q Sometimes we find there is a certain, meaning know, but he is complaining of classical autism. Is that “Diagnosed one year ago”?
A “Diagnosed one year ago”, yes.
• Concern over deterioration of eye sight.”
You take the history again. As you have explained that would be sitting with the parents, or whichever of the parents, not both of them, was there and they would have given you a full history which you recorded as fully as you could?
Q If you look on page 10, under gastrointestinal tract, this is for the purposes of describing what his bowel symptoms are in as much detail as you can get from the parents?
“Diarrhoea started at around 18 months”.
There are a couple of rings there, but what happens – what is the next entry?
A That diarrhoea started at 18 months, which says that: “Diarrhoea is five times a day, still was watery but with no blood and no mucous and contained undigested food. Since then it has nearly always contained undigested food, the diarrhoea.”
Q Sorry, since then
A Since that time it has contained undigested food, “Now”, so at the present moment, “It is up to seven times a day. He appears to have no bowel control. There is no blood in the stool, possibly occasional mucous. The stool itself is not offensive smelling. It is occasionally pale. His appetite is small and he is a picky eater. He has occasional vomiting once every four to five months.”
Q After that I think you deal with his respiratory system, immunisation, drugs, family history. On the bottom of page 10, it seems to grind to a halt, but does it re emerge somewhere? I think page 10 is your writing and when you get to 15 we get your writing back again, but I think that may be at a later date?
Q It seems as though it is a natural end to that note?
A It would have been followed by my examination, impression and a plan.
Q I have not been able to identify it, but I think page 15 is a different note, is it not?
A That reports some blood results. It seems that blood results, certain tests, have already been done which would have occurred subsequent to the initial clerking, I think, although sometimes blood results are available from a previous tests.
Q Do you think that in fact is the note as it continues?
A No, I do not think so, no.
Q What we have on page 15 is a plan for obtaining further investigation results, is it not?
A It is, but it also records various blood results at the top there, although I cannot tell you when those blood results would have been taken, whether they, for example, were taken during this admission as part of this series of investigation or from a previous time.
Q We have in the middle of page 15, “Needs pyruvate, lumbar puncture” and then is that somebody else’s writing?
A Yes, it is.
Q “Protein electrophoresis, lactate, glucose, measles antibody and then DCR”.
Q PCR, sorry, and then Schilling, EEG, evoked potentials, “light protected samples for Nick”, you have written. “? barium meal and follow through needs to be ordered” is that?
Q “Done. As terminal ileum not entered on colonoscopy”?
Q So that would tell us that this was not after the Monday anyway?
Q Then you have the dates alongside when other investigations are going to be carried out and ending up with the EEG and EPs with sedation on the Thursday barium meal and follow through on Wednesday 23rd?
Q Maybe in the short break we may be able to identify the end of the previous note, but that is clearly after the colonoscopy but before the Wednesday and before the other investigations have taken place?
Q Could you turn to page 88 and 89. These are the consents, the colonoscopy and biopsy, signed by the mother, I think, and the name of the doctor is somebody else, it is not you. On the following page, “Consent Form for Research Biopsies” which is on the headed notepaper for the department. Again a different doctor has countersigned it, but is that the general form, extra biopsies consent, which you spoke about?
A Yes, it is.
Q Which is produced by the paediatric gastroenterology department in relation to colonoscopies that are carried out?
Q Could you turn to page 17. 22 July, the top note, is the ward round, is it not?
Q That is your handwriting?
A It is.
“Faecal loading ++ Needs probably repeat after…”
is it bowel prep?
A Clean prep.
Q “Nasal gastric tube”?
A Via the nasal gastric tube.
Q What is the last line?
A “Arrange repeat endoscopy with …” and obviously something has followed that but I cannot see it.
Q As far as the faecal loading is concerned, where would that have come from, the information about that?
A At this stage, presumably, there would have been an attempted colonoscopy and it may have been from that it was impossible to proceed because of faecal loading. It may have been on abdominal examination, it may have been from abdominal X ray, one of those potential reasons, for noting faecal loading.
Q When you refer to repeat endoscopy you are referring to colonoscopy?
Q If you look at page 100, this is Dr Murch’s report.
Q The examination date is 22 July which would be the Monday?
“EXAMINATION TYPE: Planned – first colonoscopy Instrument passed to sigmoid colon
FINDINGS: Severe faecal loading
FURTHER INVESTIGATIONS: repeat procedure
Histology not taken
Procedure abandoned due to gross faecal loading. Repeat later after clearout.”
So the explanation is in Dr Murch’s report. There had been an attempt to do a colonoscopy which had been aborted and that is why your note in the ward round on that day says it has to be repeated but he has to have bowel clear out in the meantime?
Q I think that colonoscopy was repeated on 25 July and biopsies were taken for histology which we will look at in a moment. On 9 August 1996, I think this is the best way of dealing with it, you wrote to the general practitioner, Dr Barrow, a discharge letter which we have at page 49. If you would turn to the second page of that letter at page 50, you set out the history as far as the endoscopy is concerned and just below half way is concerned.
“Initial colonoscopy was attempted on 22 July, however this had to this had to be abandoned due to gross faecal loading. He was subsequently cleared out and the procedure was repeated three days later. On this occasion, the caecum was reached although it was impossible to pass further due once again to accumulated faecal matter. Macroscopically…”
In other words, what you see down the scope.
THE CHAIRMAN: Sorry, was it macroscope?
MR MILLER: Macroscopically, that means without histology.
A It is the picture that you see.
“There was no abnormality noted. During the same time period an upper endoscopy was also performed. There was no obvious lesion to the 2nd part of the duodenum. A small amount of altered blood was noted.
Histological examination of the biopsies taken demonstrated a small degree of focal active and chronic inflammation within the caecum. Biopsies of the ascending colon, sigmoid and rectum were all normal. The small bowel series demonstrated occasional foci of chronic inflammatory cells with the limina propria of the gastric body. No active inflammation was seen. No helicobacter were seen. Further biopsies from the oesophagus were reported as normal. Samples were also sent for disaccharidase estimation in view of the chronic diarrhoea. We are awaiting these results.”
Those results, in terms of colonoscopy and histological examination, you would have taken from the reports that were generated, or the discussions that had taken place at the time of the clinico pathological meeting?
Q “We would like to review [Child one] in clinic to discuss the implication of the mild degree of inflammation seen in his biopsies. It is also not entirely clear whether his neurological condition in fact represents a neurological deterioration in view of lost milestones, or whether it is a classical autistic picture.”
Again, that would have been as a result of discussion within the unit with you and the consultants who have been involved in his care?
A That is most likely, yes.
Q As far as this child is concerned, he has come in and he has been investigated within your department. There has been quite a lot of input, as we have seen, from the number of people involved, apart from yourself, results have been obtained and then they have been analysed and discussed, and the end product is your letter that you were writing to the general practitioner?
Q This is all part of providing clinical care for the child, is it not?
A It is. It also, hopefully, provided a record for the notes, when everything is put together.
Q Yes, the whole picture as we get it – we have stopped at this point for the moment we will go on – but you have between you identified something which may or may not be wrong with the child’s gut, and it may or may not lead to some form of treatment: that is a matter that is going to be discussed by everybody in due course and a decision made.
Q I think you spoke to [Mrs 1] in October 1996, so three months later, followed up by a letter of 3 October, which is at page 47. It is written to the child’s mother following a conversation. It is to confirm that:
“ … [Child 1] should be admitted to Malcolm Ward on Wednesday 23 October 1996. He should arrive on the ward at 8.30 a.m., starved. If this is a problem do please contact the ward so that they can arrange admission the night before.
He is due to have a barium meal and follow-through on Wednesday. He will have an EEG and evoked potentials at 11.00 a.m. on Thursday. This will be performed under sedation. In association with this, whilst still sedated, he will need a lumbar puncture. During the admission various blood tests will also be taken. I hope this is satisfactory.”
So this is with a view to completing investigations which were not carried out on the previous admission?
Q We know from what you have written in that letter, so far as the investigation of the bowel was concerned, that it had not been possible to get to the terminal ileum because of constipation.
Q So it had to stop I think at the caecum.
Q At pages 43 and 44 there is a discharge summary from you, dated 5 November. This time it was sent to Dr Luckens, who I think had become the child’s general practitioner; there had been a move to another part of the country. You say:
“… he was readmitted in order to perform the various tests which were not performed.
Faecal loading throughout.
BARIUM MEAL AND FOLLOW THROUGH
Difficult study to perform, stomach and proximal small bowel appear normal. The mucosal folds within the terminal ileum appear normal.
No oligoclonal bands detected”.
Then there are the blood results and the EEC and results.
“We will need to arrange a further admission for [Child 1] in order to repeat the colonoscopy. Previously we have not visualised terminal ileum due to marked constipation.
I have advised that treatment for the constipation should initially be 10-15mls of liquid paraffin [twice a day].”
Then you raise the question about financial support for nappies, which I think you were involved with a little later, but, again, I think you confirmed yesterday that no question of treatment would have been as a result of discussion in the department.
Q Clearly, there was a history of constipation which had made it difficult to conduct the colonoscopies and indeed the barium meal and follow-through?
A The presence of faeces had prevented the colonoscopy on a previous occasion.
THE CHAIRMAN: We did not hear that answer.
THE WITNESS: I said, certainly the presence of faecal loading had prevented a full colonoscopy on the previous occasion.
Q In your last line of that discharge letter you say:
“I am undertaking to find out whether there is anything we can do to help her …”
That was in relation to financial support to pay for nappies, which was a financial burden for her, and I think you tried to intervene on her behalf, did you not?
A I do not recall exactly what ---
Q Look at page 46, would you: “TO WHOM IT MAY CONCERN”, which I imagine is a letter which you made available to her or the general practitioner.
A Presumably it would have made available to the parent.
Q Yes, in order that they could see whether, with your backing, they could get some assistance with the cost of nappies.
Q “[Child 1] has been under our care at the Royal Free Hospital for several problems including persistent incontinence of faeces. For this he requires a very large supply of disposal (sic) nappies. The cost of such an ongoing requirement is obviously significant and I would be grateful if any means could be found to assist them with this. This is a problem which is likely to be persistent.”
Unfortunately, I do not think that letter helped?
A I do not recall at the moment.
MR MILLER: 17 January 1997, page 23A, this is an outpatient appointment at Professor Walker-Smith’s clinic, and it is his writing, is it not? Do you have page 23A?
THE CHAIRMAN: The Panel do not have that page.
MR MILLER: We have all got it here but I think for some reason it has not been put in everyone’s bundle.
THE CHAIRMAN: I think that is probably an appropriate place to break as we will need to look at it, so we will adjourn until 11.25. Dr Casson, by now I am sure you are well used to my repeating the warning, please do not discuss this case with anyone during the break.
THE CHAIRMAN: Mr Miller?
MR MILLER: (To the witness) Dr Casson, have you got page 23A now?
Q (Same handed) It is difficult to read but we can probably pick it up from the correspondence. This is just an outpatient clinic visit, and that is Professor Walker-Smith’s writing, is it not? Do you remember?
A I am not sure.
Q I think it says:
“Had salazopyrin for one month. Takes paraffin 10mls in milk at night. Abdomen – no palpable faeces. Recommend continuing on present medication.”
Then there is a letter to the general practitioner, which presumably corresponds to that outpatient clinic appointment, 22 January 1997, at page 39. The clinic date is 17 January, which is the one we have just been looking at.
A Yes, I have that.
Q “I reviewed [Child 1] again in the outpatients. There has been some improvement with salazopyrin however, [his] mother has not really given it very long she was concerned at one stage that salazopyrin might have produced a rash. I think it is most unlikely that the rash she demonstrated is anything to do with salazopyrin. At present he is taking with paraffin 10ml a day and salazopyrin, I recommend continuing this for the moment.
I have made no definite appointment to see him again. I would recommend continuing on this medication as we have found other children who have had this kind of colitis have responded well to this therapeutic approach. [Mrs 1] also raised the question of whether we should investigate the brother [name given], I think it might be appropriate to do this in due course, although his gastro-intestinal symptoms don’t appear to be very severe.”
And then just taking it forward, I think there was later in the year another outpatient appointment, which reflected in a letter at page 38. Again, it is in similar form. The date of the letter is 15 July 1998, and the clinic date is 3 July, so by implication there has been an outpatient clinic visit:
“I saw [Child 1] again at mother’s request. She was keen to see how well his constipation had responded to treatment of copper and sulphur granules, prescribed by a Scottish doctor, Dr Flint, who apparently has been involved with the care of both [Child 1] and [his brother]. [Mrs 1] was very keen that I should see the child in order that I should be able to pursue some of the research activities suggested by Dr Flint. In particular the role of aluminium, trace metals, etc. This is certainly not in our area of expertise and I have told [Mrs 1] that really we are not able to help her further with the care of [Child 1] and accordingly I have not arranged another outpatient appointment to see him.”
So it looks like that is the last involvement, but up to the point that we have been going through from the time that he was investigated, various different things have been tried but it looks as though constipation remained a significant problem.
Q In 1998, albeit the mother is approaching it from a different direction. That direction was not something with which you were familiar in the gastroenterology department?
A Sorry, can you just clarify what you mean, the direction of …
Q The aluminium.
A Oh, no, no, that was not …
Q Would you put that file away and take out the file for child 3. You will need to hand the Royal Free notes and the local hospital records from the Royal Liverpool Children’s Hospital. Dr Casson you saw this child at two points, one when you were at the Royal Free and subsequently when you saw him at the Royal Liverpool Children’s Hospital at Alder Hey?
Q We will start at the beginning: again, there looks to have been extensive investigation locally before he came to the Royal Free Hospital. I should say, we have been through the history as far as the general practice is concerned already with the general practitioner, in which details were given of what had been done at her referral earlier in this, so we are picking it up at the time it comes to the Royal Free. If you look at page 50, this is a letter from Professor Walker-Smith to Dr Rosenbloom at the Alder Hey Hospital.
Q It looks as though Dr Rosenbloom, who is a paediatric neurologist, is he not?
Q Had sent this child’s notes to the Royal Free:
“We are arranging his admission for Sunday the 8th of September for colonoscopy, however the initial blood screens for bowel inflammation were negative, however Dr Wakefield is of the opinion that subtle changes n relation to inflammation may be present in such children, and we have arranged [Child 3’s] admission for a week to 10 days for a period of intensive investigation. We will let you know the results in due course and return his hospital notes to you then.”
Professor Walker-Smith wrote to Dr Wakefield on the same day, 18 July, which is at page 49:
“This child with autism has had no evidence of bowel inflammation on routine blood tests, however we are arranging his admission for colonoscopy on Sunday the 8th September, followed by your intensive investigations. I would be very grateful if you could arrange the other aspects of his admission.”
You have written, I think, on that, dated 23 August 1996, “for colonoscopy only and discussion on or after …
A As discussed with.
Q … as discussed with Professor Walker-Smith and Dr Murch.”
Q Then there is a letter from you to the mother at page 45, which is in almost identical terms to the one we saw I think in relation to child 2, where you are simply confirming the fact that there is to be an admission on 8 September for colonoscopy and again in identical form:
“Any further investigations required will be decided on another occasion following consultation with Dr Wakefield.”
Q Were you involved in the clerking of this patient on admission? It is page 12.
A It is not my handwriting.
Q It is in the same sort of form, is it not, but it is not you?
Q This could have been one of the other junior doctors at the Royal Free?
A I presume so, yes.
Q I think you wrote in the notes at page 16, which we looked at yesterday, and I think it is under the date of 13 September, so after the child had been admitted to the hospital, and you looked yesterday on the first page of the notes, page 16, you have what you said are the blood results with the pyruvate lactate and the ratio I think there, is that right?
Q On the left-hand side: “? deranged lactate metabolism e.g …” Can you help us on the next bit?
A “Decreased pyruvate dehydrogenate activity.”
Q The third entry on the left-hand column is what?
A “I presume that is lactate pyruvate ratio.”
Q So again you take that to be blood because I think on the following page you have what are plainly CSF results.
A I would think so, yes.
Q Because they say, “CSF protein, glucose, lactate”, which are obviously CSF results.
Q You wrote the discharge summary on 4 October, which is at page 26:
“Date of admission: 09.09.96 Date of discharge: 13.09.96.
Medication on discharge:
Liquid paraffin 15mls once a day.
[Child 3] was admitted for investigation of possibly inflammatory bowel disease and a possible association of this with his autism.”
Then you deal with the history which presumably, as with the other patients, you would have got from the parents?
A From the notes, yes.
A I do not think I was involved in clerking this patient so it would have been the notes.
Q Right so you got this from the notes?
Q So in this instance it is an example of having to get the information from the notes because you had not been given it first hand by anybody at the time?
Q At page 27:
“As regards bowel symptoms, he intermittently suffers from quite marked constipation. He has had occasional rectal bleeding although this does seem to accompany passage of a hard stool.
Colonoscopy was performed under sedation. This was reported as normal to the terminal ileum but with increase in the number of lymphoid follicles within the terminal ileum. An upper endoscopy was also performed on this occasion and was reported as normal.”
“Small bowel mucosa showed an increase in intra-epithelial lymphocytes but there were no architectural abnormalities. Histology of the terminal ileum showed prominent lymphoid follicles. Colonic histology was all reported as within normal histological limits. Overall there appeared to be therefore mild inflammatory reactive changes in the small bowel samples. No granulomas were identified.”
The source of those two separate findings would be either the reports generated at the time or the discussion that would have taken place when the clinicians and the pathologists got together?
Q Then you set out the results of the investigations, which are principally blood and CSF results.
Q Then at the top of page 28:
“Barium meal and follow through small bowel was normal with no evidence of inflammatory bowel disease. The terminal ileum was well visualised and appeared normal.
The MRI scan of the brain was normal: EEG normal limit.”
Then you conclude, and again this would be as a result of everybody’s input:
“Therefore he does not appear to have significant bowel disease. There are several mildly aberrant blood results specifically an elevated blood lead and an elevated lactate. No other metabolic abnormalities were detected. The significance of the MRI findings were uncertain.”
I said more, there as some possible ischemic damage that had been identified on MRI?
Q “We will have to reconsider these findings when we review him again in the clinic. As regards the protocol that patients who are being investigated as [Child 3] is concerned, we have been unable to perform the Schilling test and the evoked potentials.”
Did you send a copy of that to Dr Wakefield and Dr Rosenbloom at Alder Hey Hospital in Liverpool?
Q The child was sent home on liquid paraffin for constipation, but the histology results were re-evaluated in this case: if you look at page 25, which is a letter dated 31 December 1996 from Professor Walker-Smith to the general practitioner:
“You remember you kindly referred [Child 3] to me and we sent a discharge summary to you on 4 October 1996” – that would be your discharge summary – “Further critical analysis of histology results has led to an amendment to the discharge summary which I now am enclosing. Our final diagnosis is of indeterminate ileo-colitis with lymphoidnodular hyperplasia and we have no adequate explanation for his elevated blood lead or elevated lactate level. We sent him home on liquid paraffin. Since then I have not heard anything further concerning him although I have had a query from Dr Mahmood from the Contracts Directorate at St Helens & Knowsley Health about another outpatient appointment. I have not seen [Child 3] since discharge, I would be interested to hear concerning his progress. In the light of these histological findings, and if gastrointestinal symptoms persist, treatment with a drug such as Asacol (Mesalazine) might be of some therapeutic value. I look forward to hearing any comments you may have.”
Q I think you told Ms Smith yesterday that you cannot say when the re-evaluation took place, but it would probably have taken place as a result of discussion between the clinicians and the list of pathologists as to the interpretation of the slides that had been obtained.
A I cannot confirm that. I do not know how that result was arrived at.
Q We have a revised discharge summary at page 37 dated 31 December. Again, it appears to have been sent to Dr Wakefield, Dr Rosenbloom and Dr Alton. Dr Casson, we have seen from the correspondence with the general practitioner that Professor Walker Smith was suggesting treating the child with Sulphasalazine. Although at the London end the trail goes cold at this point, by the time you saw him in XXX he was still being treated in that way.
A I am not sure.
Q This is not a test of memory. If you look at the Royal Liverpool Children hospital notes at pages 125 and 126. Are we to assume that page 125 is an out patient clinic?
Q You are seeing the child and the foster parents. Is that right?
Q Again, we went through this note yesterday, but just above, since then, which was at the time of the colonoscopy, on salazopyrin.
Q There is no difference. It looks as thought from 1997 to 2002 the child was being treated in that way.
Q You, as we saw yesterday, changed that to deal energetically with the constipation which was a problem at the time.
Q Dr Rosenbloom on 12 November referred this child to you. He was asking you to have a look at it from the point of view of gastroenterology and saying that he had no communication from the Royal Free. It is about halfway down on page 124,
“My difficulty is not only the conceptual one of not accepting the concept of autistic enterocolitis but also the fact that nowhere within the Alder Hey records is there any correspondence from the Royal Free Hospital”.
In fact, we saw a moment ago that you had sent the discharge summary to Dr Rosenbloom as one of the recipients of the details of the child’s admission?
Q Earlier in the notes he in fact had said there had been correspondence with Professor Walker Smith and he had sent the Liverpool notes up to Professor Walker Smith.
Q Then you look over treatment after that?
Q The position ended up with a letter that you wrote to the general practitioner on page 133 in the Liverpool notes, copied to Dr Rosenbloom. This is a letter dated 20 August written to the general practitioner, Dr Shantha.
“Dear Dr Shantha [Child 3] has now failed to attend my outpatient’s clinic on two consecutive occasions. You will recall that he had a previous diagnosis of possible MMR associated colitis made at the Royal Free Hospital and had to have treatment with Sulphasalazine. He had been treated here for problems with constipation. I trust that his bowel symptoms are generally under control now and have therefore not sent him a further appointment.”
I think I am right in saying that is the last contact that you had. I do not expect you to remember.
Q Child 4, please, the Royal Free bundle, please Dr Casson. Just to put it in its context, this child came from Tyneside and the Panel has been told that he had been thoroughly investigated for his developmental problems in Tyneside and in Manchester before he came to the Royal Free. There was a referral to the Royal Free by his local general practitioner, Dr Tapsfield and arrangements were made for him to come into the Royal Free investigations. If you look at page 10 in the Royal Free notes please, the clerking note, do you have that?
A On page 10 dated the 29th.
Q That is in your writing is it?
Q Under “Plan” and we went through this yesterday “Needs: 1. OGD” which would be upper
A Endoscopy, yes.
“2. MRI. 3. EEG ERs.”
You have bracketed those three which needed to be booked and then,
“5. Blds as indicated”
6. ECG CXR” chest x ray.
Q The Committee have this photograph which is presumably the result of colonoscopy or the upper endoscopy.
Q This is in slightly shorter form than some of the other notes that we have. We do not have the detailed history of the time. It is the preceding pages at page 8. It is a mess, Doctor. It starts on page 5. Page 5 sets out in the form that we have already seen a detailed history of all aspects really of the child, his gastrointestinal problems which you deal with on page 5,
“Complaining of diarrhoea ? Food related behavioural ? Food related hyperactivity. Developmental regression. Sleep problems, skin rashes, eczema ? Food related and abdominal pain”.
There is then a detailed history of what the parent told you about the background to his referral to the Royal Free.
Q Page 8 under “Diarrhoea” you set out the history of that. We went through this yesterday:
“Became a problem between 1 1½ yr.”
Is that ago or age?
A I presume it was one to one and a half years of age. I presume it means age.
“Initially loose becoming watery and increasing in freq.”
A “Loose and watery with increasing frequency up to three or four times a day without blood or mucus”.
Q What is the next word?
A “Contained undigested food”.
“Till 4 ½ yrs.”
“Approximately the same time as behavioural deterioration. Increased frequency of stools, became increasingly watery and the frequency became 2 6 times a day. Stool contained no blood, possibly occasional undigested food. No known associated infection with this reported worsening. Weight had apparently decreased although his appetite had stayed stable and he was possibly lethargic. Problem was associated abdominal pain which caused him to cry. Three years ago he started with an exclusion diet. Seemed to respond to withdrawal of yoghurt”.
This means eight weeks following withdrawal of milk. I am not sure about what that time refers to, but presumably within eight weeks of having milk he did some have diarrhoea.
“Fruit juices and fruits” - I am not sure what the implication of that means, but that means four days, presumably building up with slowly reintroducing fruits and juices, but possibly again resulting in diarrhoea, although this is conjecture because it is not clearly noted.
“Presently is well most of the time. If he does get an exacerbation, it seems to be related to new foods. Opens his bowels once to twice a day and this appears to be normal without any straining. Pear juice and constipation are somehow associated and the abdominal pain is resolved”.
Q Then there is a note of a gastrointestinal infection?
Q Then you go on to deal with other aspects of it. Page 10 should come next which is the plan and then page 9 follows the colonoscopy.
A It should be. I think probably 7 follows 8 because there is an examination which would have come after taking the history and then, I suspect, 10.
Q Follows 7?
A Could be 7.
Q It looks as though 9 follows 10 because there you already have a colonoscopy result. There is a ward round on 30 September – Dr Murch:
“Note – colonoscopy result.
for Schilling test tomorrow.”
A Chronologically follows as well.
Q Then you have the image on the following page as well?
Q Obviously it is difficult to see. I think there is a colonoscopy in the right hand corner?
A That would be biopsy forceps.
Q And the next date is 1 October. Could we look at the endoscopy report of 30 September, at the time that these notes and the images are generated, at page 32. The date is 30 September:
“EXAMINATION TYPE: Planned – first colonoscopy
Instrument passed to terminal ileum
FINDINGS: lymphoid hyperplasia
FURTHER TREATMENT: No treatment: Await pathology
Histology report to follow
Mild granularity of rectum, with slight disturbance of vascular pattern (‘neovascularisation’). Normal colon but ileum showed marked lymphoid nodular hyperplasia.
NB Investigation performed because of disintegrative disorder variant of autism.”
It is signed by Dr Murch. I have not been able to find a formal histology note or histology report, and if somebody else has been able to find one I would be grateful to be told about it, but there would have been one?
Q You have written a note of the histology meeting on 4 October 1996 which is at page 13. This is at the end of the week after the investigations have been carried out, certainly after the colonoscopy and the histology?
Q The histology meeting:
“Ileum – dense lymphoid pattern.
– no acute inflammation.
– normal architecture.
Colon – prominent lymphoid follicles.
– no active inflammation.”
There is no note about anything wrong within the rectum and it finishes by saying:
Q I think this is what finds it way into the discharge summary. If you look at page 21, you demonstrate that the note of the histology meeting you have made at the time, the findings are reproduced in the discharge summary of 16 October at page 21. Do you have that?
A Within the diagnosis, you mean, the lymphonodular hyperplasia of the terminal ileum?
Q No, it is actually on page 23 under “Colonoscopy”. The third sentence:
“Histology of the ileum showed a dense lymphoid aggregate with no obvious acute inflammation and normal architecture. Within the colon there was noted to be several prominent lymphoid follicles but again no active inflammation Rectum was normal. There were no granulomas.”
Q This is demonstrating that, certainly in this case, the source of what you are writing to the general practitioner was what you have written at the time of the meeting at the end of the week?
A Certainly it reads exactly the same. I do not know whether the same was written on the former histology report, which I might have had access to.
Q I explained to the Panel before that that is the way it worked, that discussions at the clinico pathological meeting led to a consensus as to what the findings were and it was ideal, if you like, to have that in the discharge because that represented the final word on the subject after the meeting?
A It represented the consensus opinion.
Q Just looking back at page 21, the diagnoses are:
“1. Autism/developmental regression.
2. Food related symptoms including diarrhoea, rashes and abdominal pain.
3. Lymphoid hyperplasia of the terminal ileum.”
You are explaining in that letter, which the Panel has already seen, what it was, the reasons for his admission:
“Investigation of a possible link between a disintegrative disorder and colitis.”
As you have in other discharge summaries, you summarise the history and summarise the findings?
Q Also on page 24 you explain the fact that because this child had a period of vomiting and being generally unwell, it was impossible to complete all the investigations.
“We will therefore need to consider repeating these on a further occasion.”
You identify those as the BMFT and the lumbar puncture.
A The barium meal and the lumbar puncture.
Q I will be corrected if I am wrong, but I do not think those investigations were carried out and the child was in due course referred to a local consultant. I am not expecting you to comment on that. I say that, generally, as far as I can see I cannot see any subsequent admission and in his case there is not apparently any treatment suggested at the time of the discharge.
Q Thank you, Dr Casson. If you put that away and take out Child 5, the Royal Free Hospital notes. The Panel, again, has heard the early history from this child’s general practitioner. It looks from the Royal Free notes as though he was seen by Professor Walker Smith at the outpatient clinic on 8 November 1996. That is in the Royal Free Hospital notes at page 40. I am not going to ask you to read the hospital manuscript note that is there, but this is in an outpatient clinic note. It is followed up by a letter to the general practitioner in the same body of notes at page 361. This is a letter of 12 November relating to the clinic appointment of 8 November which we have just had a look at, and this is he document. It is written to the general practitioner:
“Many thanks for referring this child with autism and disturbed behaviour. He demonstrated how difficult his behaviour can be when I saw him in the clinic and we did not proceed with any blood tests.”
Pausing there, do you recollect that that was on occasions a problem that sometimes it was not possible to do tests on the children, particularly things which did not involve any sedation, because they were difficult to manage?
A I do not recollect particularly, but it would obviously be a problem with a child who was upset and agitated:
“He has a number of episodes which have been interpreted as abdominal paid when he draws up his legs and appears to suffer from abdominal pain. He has intermittent episodes of diarrhoea which apparently responded in part to Nystatin...”
What is Nystatin?
A It is an antifungal treatment.
“... which has been prescribed over the past year. Several of these children with autism have had gastrointestinal symptoms and on investigation proved to have into gastrointestinal pathology. I am arranging for him to come in for a colonoscopy on Sunday 1 December 1996.”
It does not look as though you were the person who was responsible for clerking this patient in. It is at pages 38 and 39 of the bundle. I have taken this to be the clerking note at page 38. It is not in the same form, it is not written by you, is it?
A No, it is not. I do note know if the dates tally, 10 December, when he was due to be admitted.
Q I think it may be that 1 December looks to be date of the admission?
A That was the 10th, I do not think it would be.
Q Something has been ringed. I have not been able to find anything other than that, but the difficulty is that you cannot identify it in your own handwriting if this is a clerking note. It is certainly giving a history, is it not?
“Autism since 2 years
Abdominal pain the last...”
half a year I think, “since last 06 year”, but you cannot help us about it because it is not your note?
Q I think this patient’s notes extend into another volume of the Royal Free. There should be a volume 2, part 2. We go up to page 500 and something, so I suspect it is all in the same volume. It is page 424, do you have that Dr Casson?
Q This is the colonoscopy report by Dr Murch. The date is 2 December, so by the way in which these things were ordered it is likely that the admission was, as you say, on 1 December?
“Planned – first colonoscopy
Instruments past to terminal ileum
FINDINGS – Proctitis
Histology report to follow
Colonoscopy for investigation of autism with diarrhoeal features. There was mild proctitis with granular mucosa and loss of vascular pattern, but no friability of ulceration. The colon was normal throughout otherwise, while the caecum showed patchy loss of vascular pattern without ulceration. There were prominent follicles in the ileum, but not sufficient to call lymphoid hyperplasia. The ileal mucosa appeared fully normal.”
Then the histology. There is a report at page 429. On the second page the description is given:
“Specimen 1 consists of fragments of small intestinal mucosa which includes lymphoid follicles but which is without pathological abnormality.
Specimens II, III and IV are large bowel mucosa fragments with normal crypt architecture. There is at best a minimal increase in chronic inflammatory cells within the superficial lamina propria. No active inflammation is seen.
Specimens III and IV show minor crypt architectural distortion including occasional bifid forms. Paneth cell metaplasia is not seen. No excess chronic inflammatory cells are seen. A very occasional polymorph is seen within surface crypt epithelium. No ova granulomas or parasites are seen in any of these biopsies.
Comment: Large bowel series; minor changes the significance of which are uncertain but do not amount to the diagnosis of inflammatory bowel disease.”
Somebody has written, and it is not your handwriting, is it, on the document?
A I think it is my handwriting.
“Report when seen by Professor Walker Smith seemed to be more significant inflammation than indicated in this report.”
That was your note as presumably at around the time?
Q Then there was a barium meal and follow through with this patient carried out towards the end of the week on 5 December, page 452. This is the report of the barium meal and follow through. If you look at the conclusion:
“There is a 5cm tight stricture just proximal to the insertion of the terminal ileum. The mucosal appearance of its terminal ileum appears granular. These appearances are highly suggestive of Crohn’s disease.”
That was the position when you wrote your discharge letter which is at page 357. 22 December, written to Dr Shillam, the general practitioner.
“Diagnosis: 1. Part of autistic spectrum.
2. Persistent diarrhoea.”
You chart in detail the history on the second page at page 358. You say in the second paragraph:
“He had a colonoscopy performed under sedation. This demonstrated a mild proctitis.”
What do you mean by “proctitis”, this is what you were writing at the time?
A Proctitis is inflammation within the lower part of the large bowel, so mainly the rectum.
Q It continues:
“ … a mild proctitis with a granular mucosa and loss of the vascular pattern, but there was no friability or ulceration. The colon was otherwise normal throughout. There did appear to be a slight loss of vascular pattern in the caecum without any ulceration. There were prominent lymphoid follicles within the ileum. The ileal mucosa appeared normal. Biopsies showed normal crypt architecture. There was a very minimal increase in the chronic inflammatory cells within the superficial laminar propria although no active inflammation was seen. Very occasional polymorphus were seen within the surface crypt epithelium. No granulomas were seen. Overall it appears that these are minor changes, the significance of which is uncertain.”
This is again a synthesis of the reports of the colonoscopy and the histology findings and any subsequent discussion.
Q But you return to the barium meal result at the bottom of the page:
“Barium meal and follow through demonstrated a 5cm stricture just proximal to the terminal ileum. This appearance is highly suggestive of Crohn’s disease.
We are still awaiting results of his CNS MRI scan and lumbar puncture. It is therefore apparent that although there is no histological evidence of overt inflammatory bowel disease, there was some hyperplasia of the terminal ileal lymph nodes. The barium would suggest the presence of a stricture which would be in keeping with Crohn’s disease. We will need to consider these findings at greater length when we review him in clinic.”
That was the position that you had reached when you wrote the discharge letter, that it was still being suggested from the first barium meal that there was a stricture which suggested Crohn’s disease?
Q As far as what was going to happen to the child it was on hold until matters could be discussed on review in the clinic?
Q There was a subsequent admission for a repeat barium meal and follow through, under sedation, and a lumbar puncture on 15 January 1997, which is at page 7 in the bundle. That is the note for the lumbar puncture. It is a note of the procedure that you carried out, is it not?
A That is a note for lumbar puncture, yes.
Q Is it not a note that you were actually doing it?
A I think it probably was, yes.
Q Because you give the sedation, midazolam and Pethidine, the site of the lumbar puncture, “unsuccessful first attempt, okay second attempt.”
Q Then bloods and then the CSF: what you required from the CSF, protein electrophoresis, lactate, glucose and meals analysis.
Q There is a note at the top of the next page that the parents were there and that there was a long discussion with mum and dad:
“Treat constipation with liquid paraffin and seno. Inflammation in the large bowel is significant as estimated when Prof. and Alan [Dr Phillips] reviewed the biopsies – start midalozam”
and have an outpatient clinic three weeks hence.
Q At that stage there was still the question mark about the previous apparent finding of the stricture which is resolved, I think, in the results of the subsequent barium meal and follow through that was done to deal specifically with that point, because if you look at page 363, and it may be available at the time you wrote the note about the discussion with the parents, but it says that the date of the examination was 15 January, and the report from the consultant radiologist is:
“The anatomy of the ileocaecal junction is unusual, the terminal ileum being lateral the caecum at the junction. However, no stricture was demonstrated in the terminal ileum. No evidence of Crohn’s disease. Small nodular imprints are seen in the mucosal surface which would be consistent with lymphoid follicular hyperplasia.
CONCLUSION: No evidence of small bowel stricture or Crohn’s disease.”
If we look back at page 8, this, as you described yesterday would be a similar type of meeting to the histology meeting where the clinicians and the radiologists would discuss findings, in this case limited I think to the barium meal result.
Q The discussion would have concluded that what had at first looked like a stricture was in fact an unusual anatomical feature in this child.
Q And there was some concern that it might be a twisted bowel, a volvulus.
Q And as a result of that, arrangements were made for the child to be seen at Great Ormond Street?
A I think possibly for the films to be reviewed at Great Ormond Street.
Q Sorry, not the child but the films to be reviewed by them?
A I cannot be definitive but I think that is probably the implication.
Q So what at first had looked as though it was evidence of Crohn’s disease turned out not to be after further examination to deal specifically with that point?
Q And we do not know what if anything Great Ormond Street did or did not do but at the time it was thought that it might be appropriate for the films to be reviewed?
Q Page 350 is a letter from Professor Walker-Smith to the general practitioner following an outpatient clinic appointment on 5 March 1997 and it says:
“I was to see [child 5] again in the clinic. It is interesting that liquid paraffin and Picolax has had a remarkable effect on his gastrointestinal symptoms. He is no longer having diarrhoea and has three loose stools per day. I think the vicious cycle of chronic constipation with overflow has been broken.”
Just help me about Picolax, what is that?
A Picolax is also another treatment for constipation.
Q So it looks like there was a decision made that he should be treated with those medications for the treatment of constipation.
Q And also tat there had been a decision that he should have Mesalazine as well because the next paragraph says:
“Of more interest is that when his mother subsequently gave him Mesalazine there was a further symptomatic improvement with the disappearance of his abdominal pain and apparent general improvement in his behaviour and well being. As you know, we did find some evidence of microscopic colitis and we have had several children who have now responded remarkably well to Mesalazine. However, the way in which the Mesalazine was administered was not satisfactory as his mother was smashing the capsule with a hammer in order to administer it. I have therefore changed the medication to Pentasa 500mg twice a day, this is provided as a tablet which cannot be crushed but when water is added it forms a slurry and I think he will be able to take this.
I would suggest that he continues on this medication definitely for the moment and if there is a measurably sustained improvement he should continue on this. I have not made an appointment to see this child again in the outpatients and will leave it to you and the parents to decide how long he needs to go on Mesalazine for the moment.
In relation to the research that is being done concerning this group of children I suggest that you or [Mrs 5] should be directly in touch with Dr Andy Wakefield who is directing the research aspect of this study. If you have any further queries please do not hesitate to contact me.”
So far as the treatment with liquid paraffin and Picolax and Mesalazine was concerned, were they any part of any research study or were they part of care for the child in this case?
A They were part of care for the child.
Q Again, if it is necessary, and it is probably something that we can deal with with the witnesses, the documents will give an indication as to how long the child remained being treated in this way. It does not look as though you personally were involved in any further aspect of his treatment. As we know, you left the Royal Free in 1998 I think.
MR MILLER: Would you now get out the Royal Free Hospital notes for Child 6? Sir, I think that in this patient’s case some additional records were obtained, and I hope it will be confirmed as an original Royal Free bundle, and then there is an additional one as well.
THE CHAIRMAN: Do we need the additional ones as well?
MR MILLER: Yes, you will need those.
(To the witness) Dr Casson, Child 6 and his brother Child 7 were referred by their general practitioner Dr N, so the same general practitioner for each of the children. We will deal first with Child 6. If you would look at page 3 of the records you will see a letter from Professor Walker-Smith to Dr N of 11 September, and then in the same bundle there is an outpatient clinic record, which is at page 38. I am not going to ask you to interpret the notes that Professor Walker-Smith made at the outpatient clinic but there is a letter from him to Dr N in the same bundle at page 6, dated 4 October 1996:
“Dear [Dr N]
Many thanks for referring this boy, he certainly fits into the spectrum of a child diagnosed as autistic who also has bowel symptoms, as there is a history of recurrent abdominal pain and diarrhoea with passage of blood and mucous over several years. I am arranging for him to come in to have a colonoscopy and entering our programme of investigation of children with autistic problems. He will be admitted on Sunday 27 October 1996. In the meantime I have arranged for him to have simple screening for inflammatory markers. I will let you know the results in due course.”
The child was admitted on I think 25 October 1996 but I do not think that you were the doctor concerned with his admission.
Dr Casson, we will do what we can, but if you look in the additional records at pages 48 to 50, I am not sure that the full note is there. Do you have page 48?
Q That is not in your handwriting is it?
Q It looks as though it has some element of the history and some element of the examination, does it not, on the following pages, pages 49 and 50?
A Yes. I do not know about page 50 but certainly pages 48 and 49 have details on the clerking.
Q There is the diagram at the bottom which says “dietary history” but anyway, I am not going to ask you about it because you were not involved in that aspect of his admission. If you look at page 43, 28 October 1996, a report by Dr Murch:
“Planned – first colonoscopy. Instrument passed to terminal ileum.
FINDINGS: Lymphoid hyperplasia.
Histology report to follow.
Colonoscopy and ileoscopy performed in the investigation of (possible MMR-associated) autism. As with the previous such examinations, there were abnormal findings. The rectum showed minor abnormalities of vascular pattern, although no ulceration or friability. Long looping colon, with no significant endoscopic abnormality until the caecum. The caecum showed prominent lymph nodes around the appendiceal orifice (biopsied) and a rather patulous [ileocaecal] valve. The ileum showed marked lymphoid nodular hyperplasia (as did all previous patients). Biopsies taken.
Endoscopic diagnosis: lymphoid hyperplasia of ileum. Low-grade caecal and rectal changes on borderline of normality.”
Then the histology report starts at page 150. Under “Microscopic Description”:
“I. Sections show pieces of small intestinal type mucosa with normal villous architecture and a piece of probably illeccaecal mucosa with prominent lymphoid follicles and a mild focal cryptitis. No granulomas or parasites are seen.
II V. Sections show large bowel mucosa, some with attached muscularis mucosae, with prominent lymphoid follicles. There is a mild patchy increase in inflammatory cells in the lamina propria with focal cryptitis but no crypt abscess formation. There is mild architectural distortion with focal irregularity of the surface epithelium. No granulomas or pathogens are identified.
Comment: Colonic series with a mild histological non specific proctocolitis”.
That is signed Dr Rees and Dr Dillon.
That is the combination of the findings in the reports of the colonoscopy result and the histology result which we have gone into the general bank of information that was obtained about this child?
Q You did a ward round on 1 November 1996 at page 46 again in the same bundle, the additional notes, at the top of the page,
“Dr Casson(sic): Episodes of upper abdominal pain, back pain”.
A I do not know if that is Dr Casson actually.
Q We have your writing underneath have we not?
Q We have a note, doctor, whoever it is and that is presumably a note done by somebody doing a ward round?
Q It says that the child has not opened his bowels since Wednesday and the plan is to start lactose. Then, “Home today.” Is that right?
A That is what it looks like, yes.
Q It is lactose which you have told us is a treatment for constipation.
Q Then your note of the histology meeting is at page 46. “TI”.
A Terminal ileum.
Q Perhaps you had better read it.
“Terminal ileum 3 lymph follicles in biopsy. Slight increase in chronic inflammatory cells of the lamina propria. A few cells infiltrating the surface epithelium in a patchy manner. Occasional polymorph [that is white cell] in crypt. Colonic series similar throughout. Normal crypt architecture. Minor goblet cell depletion with patchy polymorph infiltration of the epithelium.”
The conclusion is,
“Microscopic colitis not lymphatic patchy active pan colitis”.
That is throughout the colon.
“Treatment recommendation with asacol or olsalazine at the dose of 250 mgs times a day”.
Q There would have been a discussion about the findings and also about what treatment was appropriate?
Q The 250mgs three times a day, is that your writing or somebody else’s?
A My writing.
Q “Asacol” and is it “or olsalazine”?
A “Or”, yes.
Q Either one of those anti-inflammatories. Dr Casson, I do not think there is a formal discharge letter in this case from you to the general practitioner, but there is a letter from Professor Walker Smith following up an out patient clinic at page 10 in this bundle. It is dated 2 December following an out patient clinic appointment on 27 November. There has been about a four week gap between his discharge and this out patient clinic appointment. Professor Walker Smith writes to Dr N:
“I am sorry we have not had the full discharge summary to send to you, but it is in the process of being prepared. Basically the recent investigation did reveal some endoscopic abnormalities. The rectum showed minor abnormalities of vascular pattern with no ulceration or friability”.
Then he sets out in some detail what the findings were as far as the histology is concerned which we looked at earlier. Two thirds of the way down that a paragraph he says,
“It is not possible to make a firm diagnosis, but clearly there is an indeterminate colitis present which may be relevant to his Crohn’s disease or ulcerative colitis abdominal pain. We therefore commenced him on Olsalazine in a dose of 250 mgs 3 times a day. The other investigations are in the process of being analysed and will be part of the discharge summary, however there was no gross evidence of anaemia or other biochemical disturbance or evidence of iron folate or B12 deficiency. When I reviewed him in the clinic on 27 November, he had recently had an episode of mouth ulceration which had also affected his brother, but in general he was making excellent progress on Olsalazine 250 mgs tds. His mother said these episodes of abdominal pain did seem to be significantly less and his behaviour had also improved, apparently friends had noted a quieter behaviour. It is tempting to relate this to Olsalazine therapy, although it is difficulty to be certain of this. However, we do have definite evidence of bowel”...
Dr Casson, you appear to have been aware of the apparent progress that had been made by this child because you wrote a letter on 26 March 1997 page 12 in the same bundle. It is addressed,
“To whom it may concern”
[Child 6] who had previously been diagnosed as Aspergers syndrome and was investigated by us for intermittent abdominal pain and diarrhoea. Diarrhoea occasionally contains blood and mucous.
Investigations that we performed showed some abnormalities of the lining of the bowel. Specifically the rectum show minor abnormality of the vascular pattern, the caecum and ileum showed lympho nodular hyperplasia. Under the microscope the appearances of tissue taken during this procedure showed a mild patchy increase in inflammatory cells throughout the colon. There was also mild architectural distortion within this tissue. We have started him in anti inflammatory medication Olsalazine 250 mgs three times a day. He appears to have made a good response to this medication and therefore should continue on it for the foreseeable future. I hope this is sufficient information if you require more treatment” –
I think that should be explanation –
“Please do not hesitate to contact me”.
THE CHAIRMAN: Yesterday Dr Casson said it should read as “information.”
MR MILLER: (To the witness) Could you just remind us as to the purpose of a letter like that?
A Usually such a letter would have been written in order to provide some assistance to parents who could show this letter as an explanation of what had gone on and what we were considering as an underlying problem.
Q We see that he continued to be seen in the out patient clinic. If you look at page 14, which is a clinic dated 16 April 1997, from Professor Walker Smith to Dr N, again just reporting the progress, or the lack of it, over the period since the last patient clinic about which he had been quite optimistic. You then wrote doctor to Dr Bennett. I am afraid to say this is in a different volume altogether. This is in Child 7’s GP record at page 267. We can finish this patient with one other reference. We saw this yesterday. It covers both Child 6 and 7.
Q It is a response to a letter from the consultant community paediatrician, Dr Bennett. It is clear from that letter, which is dated 19 May, that you had also been involved with talking to other people, including the headmaster of the school where Child 6 certainly was.
Q This is almost by way of being a discharge summary is it not, not quite the detail we have seen in others.
“Thank you for your letter of 23 April 1997 regarding [Child 6 and 7]. I have also had a discussion with Mr XXX ... who has been involved in assessing the educational requirements of [Child 6]. [Child 6] was admitted to our Unit in October of last year. He is one of a group of children we have been investigating for a possible association between part of the autistic spectrum and gastro intestinal symptoms. There is also a possible association of these problems with measles immunisation”.
Then you give the history in relation to vaccination.
Then the next paragraph,
“We performed a colonoscopy on [Child 6] As with previous children investigated as part of this spectrum, his rectum showed minor and abnormality of vascular pattern and the caecum showed prominent lymph nodes. Furthermore, in the terminal ileum there was marked lymph nodular hyperplasia. Histology of biopsies taken were consistent with a mild indeterminate colitis. In view of these findings he was started on a dose of Olsalazine 250 mgs 3 times a day. Theoretically we have postulated that resolving colonic inflammation may in some way ameriolate behavioural problems. Obviously it is difficult to find an objective measure of this and it was with regard to this that Professor Walker Smith contacted Mr XXX”.
Pausing there, Dr Casson, was that your understanding at the time that if you could manage to sort the bowel problems it might have an impact on the behaviour of the children?
A Yes, there might be an effect.
Q Then you go on deal with the child to whom we will come back perhaps after the adjournment. This was you responding to a particular communication from the community paediatrician and involving yourself at least in speaking to the headmaster in order to provide assistance for the child’s educational placement.
A I assume that there was a specific letter addressed to the department from Dr Bennett to which this is a response. It is not specifically a discharge summary.
Q I just observed earlier that there is not actually the detailed summary that you usually sent out.
Q So this is the first time after the discharge that you appear to have written to any other doctor involved in the care of this child or these children?
Q Again, just taking it forward, before we break off, we can see from the note, and perhaps just turn it up, that the child continued to be seen on a regular basis in the out patient clinic certainly up to the time when you left and indeed after the time that Professor Walker Smith left. You can close those notes and look now at the additional Royal Free notes. If we take an example at page 22, this is a letter from the clinic dated 1 May 1998 to the general practitioner following a review of this child. There is then your letter on page 23, dated 23 June 1998, which follows the child’s readmission to the Royal Free to deal with constipation.
Q Relating to that, 6 August 1998 this is the discharge summary from that, so it refers back to 11 July 1998 and the discharge back on anti constipation medication in that case. There was continuing involvement with the child which other witnesses can deal with as to how long it went on. Certainly up to the left you appear to have been involved in looking after this child.
MR MILLER: Sir, would that be a convenient point?
THE CHAIRMAN: Before we break, can I just check with you, Mr Miller, roughly if you can give me an idea how much more cross examination you have for this witness? I do not want to put any pressure on you. Justice is more important than any time restraint, but I would just to get some idea.
MR MILLER: Sir, I should hope an hour.
THE CHAIRMAN: I was going to ask the same question of Mr Coonan first and then Mr Hopkins.
MR COONAN: Sir, at the moment I will have either very little or none at all.
THE CHAIRMAN: Mr Hopkins?
MR HOPKINS: Sir, it is difficult to estimate because I do not know what else is coming, but I anticipate twenty minutes to half an hour.
THE CHAIRMAN: I suspect, Ms Smith, you will have some re examination?
MS SMITH: Sir, so far two questions. Then of course there will be the Panel questions. I am sure that it will be helpful to Dr Casson to know now, so that he can make any plans that are appropriate, as to whether he will tip over until tomorrow.
THE CHAIRMAN: This is precisely the reason why I am asking this particular question. My intention, if at all possible, is to try to finish Dr Casson’s evidence by the end of the day. Of course if it is not possible, then we will have to wait and see. Dr Casson, from what I have heard so far, it should be possible to try to finish your evidence by the end of the day today.
We will break for lunch now and we will take a slightly shorter lunch break today of forty five minutes. We will resume at one forty five. (To the witness) Dr Casson, once again you are still under oath and still in the middle of giving your evidence, so my usual warning once applies again. Please do not discuss the case with anyone.
THE CHAIRMAN: Good afternoon to you all.
MR MILLER: Child 7. You will need the Royal Free Hospital notes and one reference in the general practice records.
As we have seen, this is the brother of the previous patient. Again, he was referred to the Royal Free Hospital by Dr N in XXX. If you look at the Royal Free Hospital records at page 89, do you have that?
Q A letter from Dr N to Professor Walker Smith dated 5 December 1996?
Q The referral letter:
“I would be grateful if you could see this boy who is a child whose brother you have recently investigated as part of your programme for colonoscopy for children with autistic problems. He himself probably does not have autism, although this is not certain at present but he does have convulsions which I believe may make him eligible for your study. He also suffers with bowel problems similar to his brother who is autistic.
I would be grateful if you could see him.”
We can see that he was seen in the outpatient clinic at the Royal Free on 15 January 1997. The clinic notes for that visit are in the Royal Free notes at page 11. Nothing turns on the note. It is difficult enough to do it in the original, but it is impossible in the photocopy. You will see that it is in the Paediatric Inflammatory Bowel Disease Clinic, Children’s Clinic. There is a handwritten note, which we have seen on previous occasions with other patients. I am not going to ask you to go through that note but there is a letter at page 60 which follows that clinic appointment up. It is addressed to the general practitioner:
“Many thanks for referring [Child 7]. I was very interested to hear the history of this child in which there does seem to be a clear relationship between symptomatology and the MMR. He had the MMR rather later than usual at the age of 21 months. His mother tells me 24 hours afterwards he had a fit like episode and slept poorly thereafter and she attributes changes in his behaviour to this event. I understand that he has not been fully investigated although I understand it is your opinion that he could be within the autistic spectrum although it is not your view that he does have autism. I understand that he had had an abnormal EEG in the past and was for a period of time on anticonvulsants but he is no longer on any kind of medication. From a gastrointestinal point of view from the age of 2 he has had intermittent episodes of passage of blood associated with constipation and diarrhoea with mucous. His mother says he has intermittent high fevers although I understand that he has had recurrent ear infections which have been treated by antibiotics. He also has some intermittent vomiting at night. His mother says he cries a good deal at night. He has a somewhat inadequate diet, but nevertheless he is gaining weight and growing satisfactorily and is on no particular dietary restriction. There is no clear history of any particular food causing symptoms.
Particularly in view of the findings in his brother, I think it would be appropriate for this child to be investigated particularly by colonoscopy and I am arranging for him to be admitted on Sunday 26 January 1997 and he will be having other investigations as part of the protocol. We will let you know the results of these investigations in due course.”
I think the child was admitted to Malcolm Ward in your department on 26 January 1997. It is at page 6 in that bundle, but this is one that you missed as this is not your handwriting, is it?
A No it is not.
Q It is 26 January, but it has a history, and looks as though, there are some examination as well on the second page on page 7. There is a signature about three quarters of the way down, Dickson, do you remember him as being one of the SHOs?
A I am afraid I do not, no.
Q On page 107, 27 January, the bottom of that page 27 January:
“Ward round Prof – colonoscopy today.” .
THE CHAIRMAN: Are these two different things, because this is on page 7?
MR MILLER: I think it must be because it says:
and the admission was on the 26th. I am taking it from the sort of timetable this witness has told us about. (To the witness) “Ward round Prof”, that would be Professor Walker Smith’s ward round?
Q You cannot tell whether you were on that ward round – you may or may not have been?
A That is correct, I am not sure.
Q On page 109, this is the colonoscopy report of Dr Thomson dated 27 January. It coincides with the date we have seen in that last note:
“Histology report to follow.
Slight evidence of vascular abnormality in rectum and sigmoid but otherwise essentially normal. The terminal ileum however demonstrated a marked degree of lymphonodular hyperplasia.
Pictures of this area were taken.”
Then the histology report at page 148. I think it starts at the bottom of page 147. Do you have two pages 147 in your bundle?
A No, just the one and it is illegible.
MR MILLER: You only have the illegible one?
THE CHAIRMAN: 147 and 148 are both illegible.
MR MILLER: I have replacements put in mine. Do you have 149, which is legible at all?
A Partially legible.
Q Under “Microscopic Description” and the two lines that follow, do you have that?
A Yes, I do.
MR MILLER: Sir, is your 149 legible?
THE CHAIRMAN: Just about. When you read it I think we can pick it up.
“Two pieces of small intestinal type mucosa with essentially normal villous architecture. There is no increase in inflammatory cells in the lamina propria or intraepithelial lymphocytes. Part of the lymphoid follicle is included. No parasites on granulomas are identified.
II VI Sections from all sites show large bowel mucosa with no abnormality of crypt architecture or significant increase in inflammatory cells in the lamina propria. Some of the biopsies contain lymphoid follicles. No granulomas or parasites are seen.
Comment: Small bowel biopsy and large bowel series without significant histological abnormality.”
That appears to be the finding from the histology, and as we looked at the previous case, there does not appear to be a detailed discharge letter, the sort of letter you usually wrote. You may not have been around at the time, but we do have the letter written by you to the consultant paediatrician, Dr Bennett, which we looked at earlier in relation to the brother, and we stopped off, you remember, when we got to the second boy. This is at least a summary in relation to what had been found for both children, is it not?
Q It is dated 19 May, so three or four months later and it is in that same bundle at page 57. The part that relates to Child 7 is on page 58. It starts in the fourth paragraph:
“With regard to [Child 7] he was referred to Professor Walker Smith by Dr N. He is not thought to have features of autism. There was concern over a previous fit like episode which occurred 24 hours following his measles vaccination. There was also concern that from the ate of 2 years he had intermittent passage of blood PR with alternating constipation and diarrhoea.
It was decided in view of the findings in his brother to investigate [Child 7] further. He was therefore admitted for colonoscopy on the 27 January 1997. This demonstrated very mild evidence of vascular abnormality in the rectum and sigmoid but was otherwise essentially normal. However the terminal ileum demonstrated a marked degree of lymphonodular hyperplasia. Histology from this procedure was reported as normal.
When [Child 7] was seen subsequently by Professor Walker Smith in the clinic, he felt that a therapeutic trial of Olsalazine was indicated. This was empirical treatment chosen as mum had reported a marked improvement in [Child 6].
I hope this is sufficient information and would be extremely pleased to keep in close contact with yourself, and let you know of any further developments. If you require further information, please do not hesitate to contact us.”
Again, you have explained that the circumstances in relation to the brother of writing that letter and you are offering to keep in touch if she wished to have any information from you?
Q By that you meant the unit, obviously?
Q You referred to a therapeutic trial of Olsalazine and that it was empirical treatment chosen because the mother had reported a marked improvement in the brother. You could see that as a perfectly reasonable approach at the time presumably?
A I think there were obviously bowel symptoms of uncertain cause which were causing considerable anxiety and concern and, therefore, in view of the history with his brother, it would be a reasonable thing to try and provide some relief to this child’s bowel symptoms similarly.
Q As far as the writing of this letter is concerned, again it would be the same sources that we have discussed already, the various reports, and if there was a clinico pathalogical meeting and discussion, it would all have come out of that?
Q Taking up the point about treatment, the suggestion to try Olsalazine had been made by the time you wrote that letter because it was something which had arisen when the child was subsequently seen by Professor Walker Smith and that event had passed by the time you wrote this letter?
Q It looks as though he was still taking it at the next review clinic which was on 9 July 1997. The letter that followed that clinic is at page 56 – 16 July, clinic 9 July – written to Dr N.
“When I saw [Child 7] again in clinic his mother says he continues to have diarrhoea now up to 4 to 5 times a day. A week ago he had an episode of blood and mucus in the stools which settled spontaneously. This is a bit surprising as he continues Olsalazine 250 mg tds but this is given as a syrup which he keeps in the fridge; I presume this is a satisfactory say to keep the medication but I will discuss this with our pharmacist. His behaviour however has become much more testing in that he is very much livelier than before and has considerably increased wordpower. This is really quite notable. When I examined him myself I could have quite a lively conversation with him. [The mother] believes it has ‘woken him up’. She also says he also has very few petit mal attacks since he started Olsalazine. Whether this is coincidence or not it is hard to judge as indeed is all this kind of response to this therapy. I would like to continue to review him and see him in clinic in 4 months’ time. At some point in the future it may be important to withdraw the drug therapy.”
Do you know who Steve Tomlin was?
A I recall Steve Tomlin was a pharmacist.
Q It is a copy to Steve Tomlin and the letter talks about a possible discussion with the pharmacist about keeping it in the fridge. I think you wrote a note on 9 September 1997 which is at page 14. I think this is 9 September – the hole punch goes through my date – that is your writing, is it not?
A Yes, it is:
“I have taken several phone calls from [the mother] who is concerned that the Olsalazine may be improving his behaviour but worsening his bowel condition. She has been advised to observe the effect of stopping Olsalazine for period of three weeks and subsequently restarting it. This appears to have confirmed her opinion. I requested an abdominal X ray to exclude the possibility of constipation. She has sent me the X ray it does not show faecal loading, but is suggestive of Riddells lobe giving the impression of hepatomegaly. I have discussed this today and on several and with the GP, Dr N. On this occasion he will arrange an ultra sound of the abdomen to confirm this. Now [Child 7] is off the Olsalazine, if the diarrhoea persists, we will arrange to review him in our clinic.”
Then you deal with the point you dealt with yesterday about contacting Jill Thomas almost everyday with concerns over Child 7.
“Dr N is aware that she seeks very frequent medical advice and has had difficult relationships in the past with medical personnel. We have agreed therefore that Dr N should control all dealings with [the mother] in order to coordinate help and advice in a most consistent way.”
That followed telephone conversations with the mother and Dr N?
Q If you turn to page 254 in the GP records, do you have the letter we saw yesterday?
Q It really mirrors the note that you put in the child’s notes at the Royal Free, quite a long note?
Q You end up by saying:
“Nevertheless, if his diarrhoea persists we will be happy to review him in clinic.”
That was the position, that the door was open and, if it was necessary, to see him back at the Royal Free?
Q That was the last correspondence you had on dealing with this child. Can you confirm from the notes that the child remained under the care of the Royal Free and continued to attend at the outpatient clinic right up to 2004?
A (No audible answer)
Q In that bundle, while you are there, if you look at page 135 – and again I do not want you to get involved because you had long gone since then – this is a letter from a specialist registrar in the department to a general practitioner, or a doctor in XXX, relating to a clinic visit review in the clinic on 17 March 2004.
Q It is a review in Dr Heuschkell’s clinic. Dr Heuschkell was a consultant who joined the department after you left and after Professor Walker Smith?
Q Would you put away those notes please. Child 8: in relation to this patient we only need the Royal Free notes. This is the child who came from the XXX. The Panel has already heard about investigations, or will hear about investigations, that were carried out in the XXX locally. We are only dealing with the Royal Free involvement. If you look at page 22, a letter of 3 December 1996, this is a letter from Professor Walker Smith to the mother. It is copied to you, is it not.
“I have had documentation concerning [Child 8] and I have heard that you (the mother) would like to go ahead with the investigations. I have arranged for [Child 8] to be admitted to Malcolm Ward on Sunday 19 January. The colonoscopy will be the next day and other investigations will be arranged during the week. [Child 8] should be able to go home on Friday or Saturday.”
That is the timetable which you described in relation to other children?
Q At pages 7 and 8, there is an admission note dated 19 January 1996, but it is not in your handwriting?
Q It would have been something which you would have seen in order to write your discharge summary because you did not have your own personal contact with the parents?
Q Would you turn to pages 96 and 97? Page 96 is a standard consent form, is it not, produced by the Trust?
Q So it is a Royal Free Hampstead NHS Trust consent form, and it is not you who takes the signature of that. The next page is the one, as we have seen before, designed by your department in order to take the extra biopsies.
Q There was a colonoscopy, I think, carried out by Dr Thomson on 20 January, and a histology report, also on 20 January. At that stage, after the child was discharged, there was not the usual discharge summary letter which you would habitually send out if you were involved around the time of discharge, is there? I think what we have is a letter dated 27 November, so about 10 months afterwards?
A Without looking through the notes I do not know.
Q I am not asking you to do that. Usually you manage to send these things out within a few days or a couple of weeks of the discharge but there is a detailed letter from you, which is a detailed summary, dated 27 November, which is at page 15 I think in this bundle. Again, it is not in any way a criticism of you, Dr Casson, it looks to be the same sort of document we have seen in other cases but it happens to be dated 27 November 1997.
Q It fulfils the same function, does it? It is a description, (a) of the history as you understood it, and (b) of the results of the investigation that has been carried out at the Royal Free?
Q On page 15 there is the history, which must have come from the clerking note done by one of your colleagues.
Q A colonoscopy was performed (top of page 16):
“… which was macroscopically normal except for mild increase in lymph node tissue within the terminal ileum. Histology of biopsies taken during this procedure noted lymphoid follicles within the terminal ileum. All pieces of colonic tissue demonstrated minimal inflammatory changes.”
So that is a synthesis of two sources of information and any discussions there may have been about it?
Q Then there are all the results of blood, certainly, following that, although I am not sure that I can identify from that any CSF results.
Q You conclude the letter by saying:
“These results therefore are not indicative of marked ongoing inflammation. The results from Dr Wakefield’s specific investigations concerning the measles antibody would be available from him.”
So the letter deals with the investigations carried out in your department. Other aspects, like measles, would have to come from Dr Wakefield.
Q If we look at the letter, there is no reference here to treatment having been started, or anything.
Q In the body of the letter it does not suggest that there is any treatment. Is there any reason why that would have been?
A I cannot be definitive about that but presumably again it was as a result of general discussion that it was not indicated in this circumstance.
Q Would you put that away, please, and we will go now to Child 9. We will need principally the Royal Free Hospital records. This child came from XXX. His first outpatient clinic visit was on 8 November, and the clinic note is at page 17. That was followed by a letter to the local paediatrician Dr Spratt from Professor Walker-Smith of the same date, I think 8 November 1996, which is at page 36:
“I duly saw [child 9] in the outpatients. From a gastrointestinal point of view it is interesting that he does pass 1 loose stool a day which in fact seems to be his pattern from the age of 2. He also has screaming attacks which are clearly related to food which his parents attribute to abdominal pain, it is difficult to interpret this. As you know his diet has become severely limited but despite this he is gaining weight and growing to above average with height and weight both above the 90th centile. We have now seen several children with autism and gastrointestinal symptoms, all of whom on gastrointestinal investigation have proved to [have] some kind of bowel inflammation. It is quite difficult to relate this directly to autism, Dr Wakefield as you know, believes that immunisation may play some part, although I remain neutral on this issue for the moment. However the parents are keen that we should endeavour to investigate [child 9] and I have therefore arranged for him to come in to have a colonoscopy. He will be admitted on 17 November. We will then endeavour to follow this by barium meal and follow through and also to do a repeat lumbar puncture. We will let you know the results of these investigations.”
As suggested, Dr Casson, in the letter, the child was admitted on 17 November, and the note of this admission starts at page 7, and then there is another longer note on page 9. Again, it is not your handwriting is it?
Q It would have been one of the other junior doctors. Just to help us, I think page 9 looks to be a note dated 18 November, does it not?
Q It is a rather long note and goes over to page 11, is that right?
Q The child had a colonoscopy and the report of the histology is at page 48:
Specimen I. Small bowel mucosa showing no histological abnormality.
Specimen II-VII. Large bowel mucosa showing prominent lymphoid follicles but no histological abnormality”.
Then the colonoscopy report by Dr Thomson is at page 73. It is dated 18 November 1996:
“Disintegrative disorder. No abnormality up to terminal ileum except for a small area at the hepatic flexure which was slightly erythematous. There was a marked increase in the size and number of prominent lymphoid nodules.”
So that appears to be the combination of the histology and the colonoscopy report results. On 3 November 1996 you wrote a note at page 35: I do not know whether you can help about this. It is not in the notes, it is a sort of note with no addressee but presumably it goes into the note.
A Yes, it will have been a record of a conversation.
Q “I have been contacted by Caroline Fertleman from the Poisins (sic) Unit who reports a lead level of 260 on [child 9], this requires further investigation. Specifically a history of pica should be sought. If there is a good history of pica the Environmental Health Department needs to be notified of this and they will attend the house and define specific sources of lead.
This lead level is roughly at the level at which chelation therapy may be suggested. It is felt that [child 9’s] level presently does not justify chelation but we may give consideration to it at a later date.”
That is just to be put in the note or is it a suggestion that there needs to be further investigation done at the Royal Free? At the end of the first sentence you say, “This requires further investigation.”
A It would have required finding out from the family whether there was a history of pica and then acting on the basis of that – and presumably consideration would have been given to further therapy for that if it was a persistent problem.
Q Just help us, Dr Casson, that is a problem where people eat foreign objects which may have a high level of lead in or on them which leads to high levels of lead in the blood.
A That is correct.
Q The involvement of the Environmental Health Department is to see whether there is an obvious source of lead within the house in order to see whether it can be eradicated or should be eradicated?
Q This child was readmitted on 9 December 1996 for MRI and lumbar puncture, and I think you have written the note which we have on page 12: would you read that to us?
A “9 December 1996: Readmitted for MRI under general anaesthetic with lumbar puncture and bloods. Basically well. On examination well – to continue” and I have signed it.
Q Would you look in the GP notes for child 9 at page 89? This is a letter from Professor Walker-Smith dated 31 December, and he writes to the consultant paediatrician, Dr Spratt, in XXX:
“[Child 9] was duly admitted. Endoscopy revealed a marked increase in size and number of prominent lymph nodes in the terminal ileum ie. lymphoid nodular hyperplasia. The colon was endoscopically normal except for an area at the hepatic flexure which was slightly erythematous.
Histologically there was an increase in chronic inflammatory cells throughout the colon with a moderate increase in intra-epithelial lymphocytes.
Other investigations were however normal and are being collected and you will have a discharge summary soon.
Our diagnosis is indeterminate colitis with lymphoid nodular hyperplasia.
A therapeutic trial of Mesalazine (Asacol) may be worthwhile.
We have now studied seven children all of whom have had some evidence of enterocolitis and disintegration disorder following MMR. Two of these may have Crohn’s disease. One of these has improved significantly on enteral feeding.
Clearly this is a difficult group of children and our work is only beginning but we will keep you informed.
I wonder if you have seen any other similar cases in XXX?”
I think the child was seen again in Professor Walker-Smith’s clinic in relation to his bowel condition. If you look back at the original volume at page 20, this is an outpatient clinic note of 18 March 1997, a handwritten note:
“On Salazopyrin suspension 10ml [twice a day].
Last [something] since 29 March 1997.
Abdominal pain much less.
Does not scream so much.
No change in stools.
High folate study”.
Then it is signed by Professor Walker-Smith.
Dr Casson, there were a number of other problems again we can go through with other witnesses in relation to the lead which continued from the notes to be a problem that required investigation. You may not have been involved in this. We will deal with it with other witnesses. The problem about the high lead level was one that had been to be investigated subsequently. That was something that you yourself had flagged up in your note which was placed in this child’s notes.
Q Can we turn to Child 10, please? We will need both bundles for this. Child 10 came from XXX. We know that from what we have already been told. We see it with your correspondence subsequently with the general practitioner and the local paediatric gastroenterologist in XXX. There is a referral letter in the Royal Free volume 1 notes at page 35. This is a letter from Dr Hopkins, general practitioner, to Professor Walker Smith with quite a detailed account of the history. He noted and it is picked up by you subsequently in the third paragraph –
“He had been given the MMR vaccine on 21.2.94. Of all the investigations performed by Dr Paul Davis, consultant community paediatrician locally, the only thing of significance was that his ‘measles’ antibody was significantly raised.’”
He is referring the child. In the form that we have seen already with a number of these children, there is an out patient clinic visit on 8 November and then there is a letter to the general practitioner at page 41. Page 17, the out patient clinic, again in what looks to be the same handwriting. It is in the second volume. Do you have the second volume? There are two volumes of these notes.
A Are we looking in the second volume?
Q Help me if you would, Dr Casson. Do you have two volumes of notes or one?
Q I am looking at a letter of 11 November 1996, page 33.
A “Dear Dr Hopkins”?
THE CHAIRMAN: The same letter is in volume 2 on page 439.
MR MILLER: This could be a short piece of cross examination Dr Casson if I cannot find the documents! We will try page 33 which is the letter which starts, “Dear Dr Hopkins”; do you have that?
“Thank you so much for referring this very difficult problem with [Child 10] history of loss of acquired skills, and somewhat autistic features which have improved. From a gastroenterological point of view, it is interesting that he has intermittent episodes of eatery diarrhoea and has episodes of screaming when he clutches his abdomen which could be related to abdominal pain”.
Can I just pause there, when we went through the last patient, you had noted abdominal pain. Was that something which you took note of at the time, a record or a report from the parents of apparent abdominal pain with these children?
A It would have been part of my questioning as well.
Q Would you have seen it as significant at the time?
A It was significant in as much as it was a symptom which possibly related to his gastrointestinal tract.
“The parents are keen that I should investigate him for possible gastrointestinal disease. It is very interesting that he has a high measles antibody and I think that this needs to be taken into account with the possible relationship of measles immunisation and inflammatory bowel disease. I am therefore arranging for him to come in to have a colonoscopy on Sunday 12 January. That was the earliest date that suited the parents. Many thanks for referring him. We will let you know the results in due course”.
You were responsible for the clerking note or the admission note for this patient, which I hope is in volume 2 at page 10. Dr Casson, it is a familiar pattern. This was your general history, history of bowel symptoms and a full account of what you were being told by the parents on all fronts.
Q The child was admitted in the same way as the others for colonoscopy. If you turn to volume 1 at page 57 this is the colonoscopy report by Dr Murch 17 February 1997.
“This colonoscopy was definitely abnormal, in probably a more striking example of the pattern seen in the cohort of the autistic children. The rectum showed definite mild abnormality, with a slightly granular mucosa and abnormal vasdcular pattern. Prominent lymphoid follicles could be seen throughout the colon, with no other mucosal abnormality. The caecum showed an eryhthematous, granular mucosa around a swollen ileo caecal valve, while the terminal ileum showed minor inflammatory change and striking lymphoid hyperplasia distally. I suspect that the biopsies will show unequivocal abnormality!”
The histology report is two pages further on page 59. Two thirds of the way down under,
“The specimen consists of small bowel and have sampled a Peyer’s patch. Where present, the overlying villi appear unremarkable. The lymphoid tissue shows reactive changes. Parasites and granulomas are not seen”.
Then sections II IV,
“All these biopsies show large bowel mucosa with occasional isolated bifid glands. The inflammatory population is within normal limits. Parasites and granulomas are not seen”.
Then under “Comment” it reads,
“No significant histological abnormality”.
The name at the bottom is Dr Jarmulowicz.
MR MILLER: Sir, this is a document which I would like to be inserted at page 59A in this bundle.
THE CHAIRMAN: This will be 59A in volume 1.
MR MILLER: Yes. (To the witness) Doctor, the document that we just looked at is a report in relation to this child. Then this green document which should follow is identical in terms of the first part down to Dr Jarmulowicz’s name. There is a supplementary report underneath that. Do you see that?
Q This is Microscopic description, and then it says:
These biopsies have been reviewed following a clinicopathological meeting. The ileo biopsy shows comfluant lymphoid aggregates within otherwise unremarkable small intestine. The large bowel biopsies show a very subtle scattering of chronic inflammatory cells within the lamina propria. The superficial lamina propria contains focal nuclear debris and the surface epithelium appears slightly degenerate. No active inflammation is seen. More levels have been cut and no granulomas have been identified.
Comment: Minor abnormalities ? significance.”
On the face of it, this looks like a supplementary report prepared by the pathologist following discussion at the clinico pathological meeting?
Q I think you described yesterday that that might happen if there were differences anyway between what had originally been written and what had been decided at the end of that meeting.
Q That is an example of that happening in this case.
Q When it comes to your discharge summary in this case, your letter in volume 2 at page 38, you again set out the history:
1. Learning difficulties.
2. Abdominal pain with occasional diarrhoea.
3. Noted Elevated Measles Titres.
4. Microscopic Colonic Inflammation of with Lymphoid Hyperplasia of Ileum.”
You note the history and on the second page of the summary you say in the fourth paragraph down:
“Colonoscopy was performed and demonstrated a granular rectal mucosa and an abnormal rectal vascular pattern. There were prominent lymphoid follicles throughout the colon but no other mucosal abnormalities of note within the colon. His caecum had a slightly erythematous granular mucosa and a swollen ileo caecal valve. The terminal ileum showed very striking lymphonodular hyperplasia with only minor inflammatory changes.
Biopsies were taken during this procedure normal crypt architecture but with mild, increased distribution of chronic inflammatory cells throughout the colon. There were also decreased goblet cells and focal abnormalities of the epithelium.”
In that description of the biopsies of the histology, did you draw that from the original or the supplementary report that was prepared – if we go back to pages 59 and 59a?
A Looking at the reports, it would seem that the letter was written with the knowledge of the supplementary report.
Q Because it is paraphrasing it but it is more consistent with that?
Q Again, to be fair to you, it follows what you said before that when you did your discharge summaries it would usually follow discussion about the histology and colonoscopy findings at that meeting?
Q Finishing up that letter in the last paragraph – we are back in the other bundle:
“In view of the definite inflammatory changes noted in his colonic biopsy we feel it would be appropriate with anti inflammatory medication and therefore will recommend treatment with Sulphasalazine, 250mg qds [four times a day] which we would be grateful if you would prescribe this.”
You said yesterday this was under consultation with Professor Walker Smith?
Q I think you made a referral, presumably, after discussion with one or other of the consultants, probably Professor Walker Smith you said yesterday, to Dr Jenkins in XXX which I think is at page 36 in that second volume:
“Professor Walker Smith would be extremely grateful for your assistance in managing this child. As you know we have now seen several children with a syndrome comprising a neurological disintegrative disorder (part of the autistic spectrum) and bowel problems. In [Child 10] we noted similar colonoscopic and histological findings to several of the other children. In view of this he was started on Salazopyrine 250 mgs qds. Nevertheless, [the mother] has not noticed a significant improvement and remains convinced that there may be an element of reaction to certain foods. On discussion with her it is also possible that constipation has a role to play in his symptoms.
Please find enclosed a discharge summary letter. Would it be possible for you to see them in your outpatients department as its obviously difficult for them to be seen in London.”
You enclosed your detailed letter which we have just looked at?
Q I think you then received a query from the general practitioner, Dr Hopkins, about the anti inflammatory, you were suggesting, should be used. That is at page 68 in the original bundle. I am sorry it is back to the GP records where we can find it there at page 68. Do you have that?
Q This follows telephone a conversation, and Dr Hopkins is concerned about prescribing this particular drug:
“Thank you for your phone call regarding the use of Salazopyrine in [Child 10]. I should reassure you that it is a medication that we have had very few problems with regarding adverse side effects. Nevertheless side effects are more noticeable with this 1st generation 5 ASA derivative as opposed to the newer one eg Mesalazine. Unfortunately however, the newer ones are not generally available in liquid form and therefore children such as [Child 10] find them difficult to take.
Side effects comprise very occasional idiosyncratic renal dysfunction. They also include ongoing liver dysfunction, skin rashes, haematological dyscrasias. There is no recommended protocol for following up these children, nevertheless I would recommend that he should have his renal and liver functions and [full blood count] with white cell count differential and amylase checked monthly for 3 months and then at 3 monthly intervals.”
So you were telling him, giving him advice, about what he should do in terms of following up and monitoring how the child was dealing with the drug?
Q You received a letter, turn back one page in the general practice records from Dr Jenkins, who was also a consultant paediatric enterologist:
“Many thanks for your letter regarding [Child 10]. I would be very happy to see [him] regarding his non specific colitis. He is at present looked after by Dr Paul Davis, Consultant Community Child [Paediatrician]. I need to have his approval, as well as the approval of [Child 10]’s general practitioner, before arranging to see him. I have copied this letter to both of them and will in the meantime send a provisional appointment for a couple of months provided that [Child 10’s] general practitioner and Dr Davis are happy with this.”
Effectively you were asking a colleague in the same specialty to look after the child and, subject to the approval of the consultant paediatrician and general practitioner, he was able to take on that referral?
MR MILLER: I think that was the position thereafter, that the child, as we heard from the general practitioner earlier in the hearing, was seen and looked after by the general practitioner, Dr Jenkins, rather than the Royal Free. Sir, I have one more to go, relatively short, but if you want to take a break now I am happy to accommodate.
THE CHAIRMAN: I think you might complete this.
MR MILLER: This is Child 12. At the risk of incurring the wrath of the committee, can I confirm that we have the Royal Free notes and general practice notes and that is all that there is – that you have anyway. In the Royal Free notes doctor, it appears that this child was referred by a general practitioner in XXX, Dr Stuart, in September 1996. We have seen when the witness gave her evidence her referral letter at page 69. The child was seen in the outpatient clinic on 18 October, of which there is a note at page 12. As we have seen – the pattern that has developed in all these cases – after that the first outpatient clinic there is a letter which comes from the Royal Free from Professor Walker Smith to the general practitioner dated, in this case, 21 October at page 67. Do you have that?
“Thank you so much for referring [Child 12], certainly he seems to fit the spectrum of autism. I am interested that he in fact does not have very significant gastrointestinal symptoms although as you say he has some soiling. I note that you found that his rectum was empty. When I examined him today he certainly had no evidence of faecal loading. He is gaining weight and growing satisfactorily. Some of the previous children I have had referred to me with autism have had clear cut gastrointestinal symptoms with quite severe abdominal pain and intermittent bleeding and we have gone ahead with our programme of colonoscopy and intensive investigation. However, in [Child 12’s] case there is very relatively minor gastrointestinal symptoms. I felt it right to perform a full blood count, ESR, CRP and I will discuss further with [the mother] concerning the need for intensive further investigation and if the parents wish us to proceed we could certainly arrange this. For the moment I have told [Mrs 12] to get in touch about the results of the blood tests and I have not given another outpatient appointment.”
There is a letter at page 38 to Mrs 12 dated 25 November 1996 from Professor Walker Smith:
“Many thanks for your letter of 20 October. I have now got back the blood tests .One was slightly abnormal. As I see that you are keen for us to proceed with investigation I think it would be appropriate for us to arrange for [Child 10] to come in for a colonoscopy. I explained in the outpatients what this involved. Basically he is sedated and the colonoscope is passed through the lower bowel and pieces of tissue are taken. The children are usually admitted for the course of a week and various other aspects of the protocol are undertaken. If you would like us to proceed with this, please let my secretary know and we will arrange for a date for [Child 12] to come in in the New Year.”
Somebody has written “Go ahead and arrange colonoscopy for the New Year. Mossin arranging”, is that your registrar colleague?
Q The endoscopy takes place on 6 January 1997. I think that the report that was carried out by Dr Murch is in that same volume at page 119. I have not taken you to the admission note because I think we identified it was not you who did that, although we have seen it when you did your discharge summary. The note of the colonoscopy:
“Appearances almost normal to caecum. Again there were minor changes in the rectum and caecum (slight changes in vascularity and prominent lymphoid follicles. The ileo caecal valve could not be identified.”
Then the histology report at page 84. If we simply look at the microscopic description, sections I IV, two thirds of the way down the page:
“Pieces of large bowel mucosa including lymphoid follicles with germinal centres. There is no architectural abnormality and no increase in inflammatory cells in the lamina propria. No organisms or granulomas are seen.”
That appears to be the end. Then there is a discharge notification by Dr Davey, who I think was one of the junior doctors, possibly an SHO on page 34. This is a proforma with some detail on it but not a discharge summary in the way we have been looking at your discharge summaries. We can see that the child is autistic spectrum, abdominal pain, started on paraffin, and then there is a prescription shown of liquid paraffin, which he looks as though he left the hospital with.
Q Then your discharge summary, which is at page 32, 22 January 1997, do you have that?
Q You give a short summary of the history:
“In regard to gastro-intestinal symptoms he was noted to be clean and dry by the age of 3 years, subsequent to this his soiling started and he is presently soiling up to 8 times a day. He does not realise he has opened his bowels and that he has soiled. The faces are very pale, loose and smelly. The abdominal pain occurs approximately once a week, occasionally associated with vomiting and anorexia.”
Where would you have got that information from? Would it have been written in the clerking note by whoever had been responsible for admitting this child?
A I presume so, yes.
Q The third paragraph on page 33:
“A colonoscopy was performed under sedation, this recorded almost normal appearances to the caecum. There were minor changes in the rectum and the caecum these consisting of slight changes in vascularity and prominent lymphoid follicles. The ileal-caecal valve could not be identified. Histological report on the biopsies taken on this series do not show any significant abnormality. A barium meal and follow through demonstrated lymphonodular hyperplasia of the terminal ileum.”
Again, this would have come through what had been discovered in the course of the colonoscopy and the biopsies.
Q Page 22 is an outpatient clinic note in January 1997, conducted by Professor Walker-Smith, and I think it says:
“Continues to soil. Soils each day. Can have bowels open. Normal diet. Liquid paraffin 10ml [at night]. Has not made any difference.”
On page 31, this is dated 25 April, so this is three months or so later, written to the general practitioner:
“We have had quite a remarkable success with the use of Sulphasalazine or 5 ASA derivatives in children with autism and evidence of lymphoid nodular hyperplasia and non-specific colitis as we found in [child 12]. I think it would be appropriate to consider a therapeutic trial of one of these agents, these drugs appear not only to help gastro-intestinal symptoms but also rather surprisingly helped behaviour symptoms. I have therefore suggested that you might consider a therapeutic trial of Olsalazine 250mgs 3 times a day for [child 12]. I would be very interested if you decide to do this to hear about his subsequent progress.”
That echoes what we have seen in earlier correspondence about a therapeutic trial to see whether it has any effect.
Q Then I think you saw him in the clinic on 30 May 1996, which is at page 14 of the Royal Free notes: do you see that?
A Yes, I do.
Q Is that your writing?
A Yes, it is.
Q Under the heading “Paediatric Food Allergy Clinic” it says: “Presently – recent chest infection from …
A “Treated with antibiotics”.
Q “Did try to take liquid paraffin – took it only for 2-3 weeks – still soiling ++. Occasional abdominal pain …
A “Coincides with temperature – appetite – variable.”
Q And physical examination …
A There was nothing on abdominal examination.
Q Then “discuss with Professor Walker-Smith.” Does 1 say “for chest x-ray” is that?
A Abdominal x-ray.
Q “Abdominal x-ray to exclude constipation. Start olsalazine and follow up in one month to assess any difference.”
Would you help me with the last one, No. 3?
A I think that says “even if constipation, no treatment at present”, so the abdominal x-ray would have been to exclude constipation and … I suppose as a general principle if two treatments are started at any one given time it is difficult to know which would have the therapeutic benefit.
Q He had had liquid paraffin, as we see from the beginning of that note, although it had not been taken regularly, it had only been taken for two to three weeks, and I think following up from that you wrote to the general practitioner on 2 June, page 29:
“I reviewed [child 12] in Professor Walker-Smith’s clinic today. Basically he remains as he has previously. Unfortunately he has not persisted in taking the liquid paraffin as mum was concerned that it made his soiling worse. He still experiences occasional abdominal pain. He is otherwise well. Abdominal examination was unremarkable.
An abdominal x-ray was performed today which demonstrated marked faecal loading …”
And that was what you discussed in the note which we have just looked at.
Q “I have discussed the situation with Professor Walker-Smith and we feel that we should initially start treatment with olsalazine 250mg tds to assess whether this makes an effect. We should hold fire on treatment his constipation.”
This is a decision which you discussed with Professor Walker-Smith to see whether the bowel inflammation responds to olsalazine.
A To see if the symptoms responded to olsalazine.
Q Yes, and therefore to know whether one treatment is working rather than not knowing which of two?
Q “We will review [him] in a month’s time at which stage it will be important to re-assess treatment and consider whether any further treatment is required.”
And you were putting this forward, albeit after discussion with Professor Walker-Smith, but you were quite experienced by this stage, and that was the strategy which you were encouraging the general practitioner to accept.
Q Then finally, if you would look at page 28, and I think this is following up what had been flagged up anyway in your previous correspondence but in fact it is Dr Malik who is doing it rather than you. It is a letter dated 7 July:
“Dear Dr Stuart,
I reviewed [child 12] in Professor Walker-Smith’s clinic today. He has been on olsalazine for almost 4 weeks. According to mother this has not made a remarkable difference in his behaviour although he has been opening his bowels more regularly. I have not made any further appointments to see him but I have taken a plain x-ray to ensure that his abdomen is better. He needs to continue with liquid paraffin. It is advisable that he should continue on olsalazine for at least one year. I would be obliged if you could keep prescribing 250mg [three times a day]. In our experience most of the children have improved on anti-inflammatory medicines.”
So that is the end point, that the one month follow up has taken place. There has not been a remarkable difference in behaviour but his bowels have been open more and therefore your colleague is suggesting that both forms of medication should be given.
MR MILLER: I think after that this child was seen locally in hospitals around the XXX area. Yes, thank you Dr Casson.
THE CHAIRMAN: Sorry Dr Casson, it has been a long afternoon but our intention is to try and finish your evidence this afternoon if at all possible, so can I first of all thank you for persevering with it and we will now adjourn and resume at 3.40 when I think there is a little bit more to go. Once again, my usual warning, to remind you that you are under oath and are in the middle of giving your evidence so please do not discuss the case with anybody.
MS SMITH: I wonder if it would be possible for those instructing me to have a quick word with Dr Casson although he is still under oath, just in case he wants us to make any provisional arrangement in case he does not finish this afternoon.
THE CHAIRMAN: I am quite hopeful that we should be able to finish this afternoon. What I am thinking is that we hopefully will not have to sit late but if it takes us a little bit later I am actually very concerned about Dr Casson so it is my intention to finish his evidence today if we possibly can. Would defence counsel have any objection to Ms Smith’s suggestion?
MR MILLER: No objection.
THE CHAIRMAN: Very well, you may have a word with Dr Casson.
THE CHAIRMAN: Mr Coonan?
MR COONAN: Sir, I have no questions, thank you.
THE CHAIRMAN: Mr Hopkins?
Cross examined by MR HOPKINS:
Q Dr Casson, I ask questions on behalf of Professor Murch. I do not propose to be too long in the questioning of you. I want to ask you about a couple of general matters to begin with and then just pick up a few strands with a few individual patients and then that will be it.
Can I go back to the general matter of the functioning of the gastroenterology department that you joined in 1995 and 1996. It was a department as we know that was headed up by Professor Walker Smith. When you joined it, it was a department that was well respected in the United Kingdom. Is that right?
Q Would it be right to say that Professor Walker Smith himself was regarded as a very experienced professor of paediatric gastroenterology with a national reputation?
Q Presumably you were pleased to join that department?
A I was.
Q The team there was recognised to be pro active in the investigation of children’s gastrointestinal problems. Is that right?
Q And chief amongst those investigations was colonoscopies.
A It was an integral part of the investigations.
Q As you have told us, it was regarded as an important tool in two respects: one it enabled the visualisation of the lining of the bowel to see visually if one could see any abnormality there.
Q Secondly, it afforded an opportunity to take tissue samples to enable a diagnosis to be reached on those tissues samples. Is that right?
Q I just want to explore with you the practicalities of the lead up to a colonoscopy. Usually a child would be assessed in out patients first before a decision was made as to whether or not a colonoscopy was required. Would that be right?
A That is fair, yes.
Q That assessment would usually be made by one of the three consultants: Professor Walker Smith, Dr Murch or Dr Thompson.
A Yes, though it may have been one of the junior staff that saw the patient initially and then discussed it with the consultants.
Q Indeed. If, as a result of that out patient assessment, a decision was made that the colonoscopy was appropriate, then the child would be on a waiting list to come into the hospital and arrangement made for admission and would then be admitted usually, as you have told us, on a Sunday if they were to undergo a week of investigation.
A That is correct.
Q Back in 1996 to 19997, the two people who mainly did the colonoscopies or upper endoscopies were Dr Thompson and Dr Murch. Is that right?
Q Let us just deal with it looking for admissions on a Sunday. There were two endoscopy lists, one on a Monday and one on a Wednesday. Is that right?
A As far as I recall, the Monday list was a well established list. The Wednesday list was a feature later on.
Q At the time we are concerned with, later in 1996/1997, the Wednesday list was up and running. Do you accept that?
A I cannot recall exactly, but possibly, so.
Q Let us deal with things from children coming in on the Sunday. Do you recall that each week on Thursday there would be a general meeting within the department at which mention would be made of the children who were due to come in the following week for investigation?
A We had a weekly business meeting. In my mind it was a Wednesday, but maybe it was a Thursday.
Q For my purposes, it does not matter whether it was a Wednesday or a Thursday. The fact is there was a weekly meeting in which there was discussion about children coming in the following week. Is that right?
A There may have been discussion about children. It covered many issues of relevance in the department.
Q If a child was due to be admitted on a Sunday, and therefore a Monday colonoscopy list drawn up, including that child, would it be right to say that sometimes the notes of that child were made available on the preceding Friday?
A Made available to?
Q To either Dr Thompson or Dr Murch, whoever was going to carry out the colonoscopy list on the Monday.
A I am not aware of whether they were made available or not.
Q From your point of view then, your involvement would usually be on the Sunday, as you have told us, clerking the children in.
Q Can we look it at from the colonoscopist’s point of view, either Dr Thompson or Dr Murch, as he then was, unless they had seen the child in out patients, the first time they would see that child prior to carrying out the colonoscopy would be on the Monday morning of the colonoscopy list. Is that right?
A That is possible, yes.
Q Can we consider the work load that they would have on a colonoscopy or endoscopy list; is it right that at that time, back in 1996/1997, the endoscopies were carried out in the adult endoscopy suite?
Q Your department was allotted a time slot of between nine in the morning and one in the afternoon?
A That was about the right time scale, yes.
Q Within that time slot the maximum number of endoscopies that would be carried out would be six. Is that right?
A It was usually four colonoscopies that were done. It may have extended beyond that on occasions.
Q I am dealing, first of all with the maximum and I will come back to what the average was. The maximum would be six. Would you accept that?
A I cannot recall exactly whether a maximum was stated. It sounds a reasonable number.
Q As you have indicated, the norm would be four patients being scoped on a Monday morning list.
A That is right.
Q That would be done usually under intravenous sedation. Is that right?
Q Those procedures, depending on the difficulty of the procedure, could last between half an hour to an hour if one includes the sedation time as well.
A That is a reasonable estimate, yes.
Q Prior then to these procedures starting in that nine to one slot, the endoscopists, whether it was Dr Thompson or Professor Murch, would usually visit the children on the ward before that list began. Was that the normal routine?
A I cannot recall I am afraid.
Q You have told us that at times you would accompany the endoscopists, not least because it was part of your training.
A I would accompany them in theatre to do the endoscopy, yes.
Q The endoscopist would need to have some familiarity with that patient before carrying out the list. Would you accept that?
A I am not sure what you mean by ‘familiarity’.
Q Let me put it in this way: an endoscopist would need to know a bit of the background of the child to know what he was looking for.
Q In order to do that, I suggest first of all one way that that happened was that there would be a visit to the ward, if time permitted, and you have told us you cannot recall whether that happened.
A That is true, I cannot recall.
Q Another way would be to look through the notes to see what referral letters had been written or out patient assessments had been written. Do you have knowledge of that?
A That would have been common practice to look at the notes before the endoscopy was performed.
Q If the child were accompanied by a parent, then that also afforded an opportunity for the endoscopist to get a history from the parent too. Did that sometimes happen to your knowledge?
A I am sure it did. In practical terms it would have been possible to do, although the short time period
Q That was the other point I wanted to come on to. Although these were opportunities to get some information, all this was happening under some degree of time constraint was it not?
Q Would it be fair to say that in reality the endoscopist was ascertaining sufficient information to be able to carry out the procedure, but this would not have be an in-depth assessment of the child. The endoscopist would have been relying on the assessments that had been made beforehand. Is that right?
Q Indeed, it would be normal practice for each child on that endoscopy list to have already have undergone preparation for colonoscopy, for example, the medication to give a clear out of the bowel.
A That would be an essential pre requisite.
Q When is that medication usually given?
A It is usually given on the Sunday.
Q So the child had already been prepared for the colonoscopy before the endoscopist would see the child on the Monday morning?
Q We can leave that topic. I want to move on to discuss a few things with you in relation, first of all, to Child 1, so if you could get the Royal Free records for Child 1. You will be relieved to know, I am not going through all the notes with you again. There are a couple of points I want to pick up with you. If you turn to page 9, we can see there the clerking in note for Child 1. Is that right?
Q There is one entry on page 10 I want to dip into the note that you have written just to pick up something that I do not think has been drawn to your attention so far. If we go about a third of the way down the page, we see “ROS” do we not?
Q Can you tell us what that stands for?
A Review of systems.
Q Then the first system you are reviewing is the respiratory system.
Q Then underneath that there is “UGS” what does that stand for?
A Urogenital system.
Q Can you read out what you have recorded on the next two lines, please?
“PU” passing urine okay. “No pain. No offensive stool”.
I do not know why that occurred there.
“x 1 episode of bleeding. Fresh red blood resolved”.
Q The reference to “One episode of fresh red blood” given that you have made a mention of stool, albeit saying “There is no offensive stool”, do you think the episode of bleeding you are referring to is bleeding from the bowel?
A I am afraid I cannot say whether it is or it is not.
Q Is that a possibility?
A It is a possibility, although I previously noted in my formal inquiry of the gastrointestinal system that there was no blood on either occasion.
Q I understand that. The reason I ask you, if we move on to page 60, you will see a note made by someone else made later in the year. You will see on 23 October 1996, as we know, the child comes back in for admission for further investigations as we see at the top of the page. If you go four lines down, there we see “HPI” is that history presenting? I do not know what the ‘I’ stands for; can you help us?
A I am not sure. It is usually HPC, which is history presenting complaint, but I do not know what those initials stand for.
Q Could it be ‘I’ for illness?
A I do not know what it is.
Q If we look three lines below that, do you see it says,
“Fresh blood in stools (mixed with stools)”?
Q Certainly in October 1996, there has been a history given of blood in the stools. I wonder, just going back to your note on page 10, whether that assists you in interpreting what your own note may have meant?
A I am afraid it does not help me in stating whether that refers to urogenital system or to stools. Where I have said “No blood and no mucous” I would have asked specifically whether there was blood or mucus in the stool, so I cannot explain that.
Q The information you have recorded on page 10 though would have come from the accompanying parent would it?
Q You can put away Child 1’s file now and take out Child 2’s bundle, the Royal Free notes and go to page 8. This is the note relating to the admission of the child on 1 September 1996 and you have been taken through this. This is a note by Dr Thompson “Admitted for colonoscopy and Schilling test” and then he sets out a bit of history. Then lower down the page towards the bottom, the need to contact Great Ormond Street as we have seen, for the metabolic work up. You were also taken to the fax. I want to do that again because I want to ask how that fits in with the note that you made. Let us have a look at page 152, please. Dr Thompson is making a record that there is a need to contact Great Ormond Street. We see on page 152 a fax consisting of three pages. Your attention was drawn to the entry relating to CSF and the record made under that heading. Can I then ask you to turn up page 9 to look at the note that you then made on 4 September. You might like to keep your hand at page 152. At the top of page 9 we see the date 4 September. The second line down is “LP” for lumbar puncture. Is that right?
Q This is your handwriting is it?
A It is.
Q From that there is an arrow going to CSF and then does it say “For protein electrophoresis.”
Q If we go back to page 152, we see that under CSF the first entry is “Protein electrophoresis.” If you go back to page 9, we then have,
If we look at page 152, we see that the last line has the same words in the same order. If we go back to page 9, we see the reference to “Measles AB” that is antibodies is it not?
Q If we look back at page 152 we see “Measles antibodies” also recorded then. Then the only other word that is on page 152 is “Cytocines.” If we go back to page 9, we see towards the left hand side circled “Insufficient for cytocines” is recorded. Just looking at that, do you think that the note that you were making on page 9 was dovetailing with the information on the front fax sheet from Great Ormond Street?
A Certainly the requests are the same.
Q Do you have any independent memory of this at all?
Q We know from this note for Child 2 that Dr Thompson was involved at the outset of the admission and we know from your evidence he was obviously one of the three consultants who would regularly review children, either in out patients or coming into hospital?
Q It is right, is it not, that because he was one of the only two people carrying out colonoscopies as a consultant, the other being Professor Murch, that he would have input into whether or not a child that he was seeing was going to undergo a colonoscopy?
A Can you say that again?
Q There were only two consultants carrying out colonoscopies at the Royal Free at the time, Dr Murch, as he then was, and Dr Thompson.
Q Dr Thompson was a consultant in his own right. You have been asked questions about who would decide whether children would undergo a colonoscopy, and Ms Smith asked you about that the other day.
Q The answer that you then gave her was that it would be a consultant’s decision. When she asked who you meant by that you said either Professor Walker Smith or Dr Murch. What I am suggesting to you is there is a third person to put in this equation is there not? There was also Dr Thompson.
A Yes, he also had a consultant role as well.
Q The Panel knows from its review of the patients we are concerned with that four of the patients, Child 3, Child 7, Child 8 and Child 9, as well as JS, had a colonoscopy carried out by Dr Thompson, so he was someone, was he not, who at the time was splitting the rota of carrying out colonoscopies with Professor Murch?
Q If any information or input was needed from a consultant about colonoscopies, it was not simply Professor Walker Smith or Professor Murch, but also Dr Thompson who had input into such a decision. Would that be fair?
Q When you have therefore been asked various questions by Ms Smith as to who would have given you instructions about the investigations for the children or the treatment they should be given, and you have replied that it would be the consultants, and when asked about that you said Professor Walker Smith or Dr Murch, should we also add into that Dr Thompson?
A From recollection many of those decisions would be made following group decision anyway where all members of the team would have been able to contribute.
Q I am not suggesting otherwise, but there was a third consultant there who was actively involved with colonoscopies who was participating in the decisions about investigations and treatment. Would you accept that?
Q Would it be fair to say that, apart from what is recorded in the notes that we have been through and given the passage of time, some ten or eleven years ago, you have no independent recollection of the role each consultant played in instructing you as to the child’s investigations or treatment decisions. Would that be fair?
Q Can I move on to a different matter. You can put away that bundle and take out FTP1 at page 200. You see the start of the ethical approval application form that Ms Smith asked you questions about yesterday. I think your evidence is that you do not recall having seen this document at the relevant time in 1996?
A That is correct.
Q We know from a few pages in, there is a date on this document of 15 September 1996. What I suggest is that there was a meeting on 12 September 1996 at which you were present, so Professor Murch believes, as well as Professor Walker Smith, Dr Thomson and Dr Wakefield in which Dr Wakefield gave a mini presentation of this document using an acetate with an overhead projection, discussing the issue of seeking ethical approval. Does that ring any bells with you?
Q Just to help pinpoint the point in time, I will move on to see if it jogs your memory or not. By this time Child 1 and Child 2 had already been admitted into hospital for the investigations as we have seen. Child 3 had already come into hospital, had the colonoscopy on 9 September, in other words a few days before this meeting, and was discharged on the same day as this meeting, which was the 12th. One purpose in this meeting was to discuss the list of investigations that were being mentioned in the document for which ethical approval was being sought. Does that ring any bells?
Q You do recall, I think, that there were meetings in which lists of investigations relating to children like Child 1 and Child 2 were discussed?
A My recollection is that it is generally that these – I cannot remember what forum or any detail – but obviously the investigations were discussed.
Q I think you do recall that the issue of lumbar punctures was discussed, certainly at one of those meetings if not more than one?
A I remember lumbar puncture was discussed, yes.
Q For my purposes perhaps the precise date does not matter. I think you recall that Dr Thomson, when the issue of lumbar puncture was discussed, said there was a clinical reason for carrying it out which was to exclude mitochondrial disorders.
Q In other words, metabolic disorders?
A Mitochondrial disorders, yes.
Q Do you recall him saying that he had experience of using lumbar punctures as part of a protocol when he had been working in Birmingham?
A I do not recall that; I do not recall that.
Q Do you recall that Dr Murch, as he then was, and Dr Thomson agreed with each other that the clinical reason for carrying out lumbar punctures in the cases being considered was to identify any undiagnosed metabolic disorder?
A I recall that the indication for doing the lumbar puncture was that. I do not remember any consensus or otherwise between the various people involved.
Q You have no recollection one way or other as to the context of that in relation to an ethical application?
A Could you clarify that.
Q You told us you recall discussions about lumbar puncture but, as I understand your evidence, you have no recall, you are neutral on the fact as to whether or not there was a discussion in the context of making an application to the ethics committee. Is that right?
A I think I recall that it was foreseen that it potentially would be an issue with an ethical application that needed to be addressed.
Q Your understanding was, and indeed from the content of the discussion with Dr Thomson and Dr Murch, that they saw a clinical need for the lumbar punctures to be carried out?
Q You can put away FTP1. I want to move on to Child 4. Would you take out the Royal Free notes for Child 4. Would you turn to page 26, which is a letter which has yet to be drawn to your attention. Just glance at that letter so you can see what it says. The Panel have seen it before. I want to put it in context for you. If you turn to the page before page 25. We see on 28 August 1996 a letter is coming from you to the parents of Child 4 informing them that Child 4 was to be admitted into hospital in September for colonoscopy, and it is a letter we have looked at before?
Q That is 28 August, your letter. If we go back to page 26, this is an earlier letter dated 4 July from Dr Wakefield to Professor Walker Smith relating to Child 4. I want to ask you about the handwriting that is to the right hand side of this – “TCI”, which presumably means to come in, “What for?” and there is a date under it, 1 August 1996, “Pos endoscopy”, then “Done 10 July 1996”.
Is any of that your handwriting?
Q Is this a document that you have seen before or are you able to help us with whose annotation it is that we see on this document?
Q Looking at page 25, your letter, do you have any independent recollection as to how it was that you came to be writing this letter and on what basis, of what information?
A I do not have any specific recollection of why, no.
Q You clerk in this child, as we know, if we turn to page 5. The child comes in on 29 September 1996. You have been taken through much of this note but there are some passages that we have not yet looked at with which I need your assistance. Towards the bottom of the page, three quarters of the way down:
Is that presenting complaint?
Q Then you have “Development”. Can you read through so you we can understand what you have recorded:
“Sitting at seven months of age
Pulling up and cruising at ten months of age but crawled at 14 to 15 months of age
Walked 18 months of age
Odd words 10 months of age and increasing vocabulary until about 15 months of age
Never completed full sentences
At 18 months of age noticed that he seemed to be losing words both vocally and in their understanding.”
Q If we turn over the page, the top few lines, I think we have been through before with Ms Smith. If we go again about a quarter of the way down you have a reference to him being very hyperactive, disruptive play, banging head – is that kicking out?
Q Can you read the next few lines:
“Until then had been placid.
Subsequently had a behavioural problem.
Also less affectionate.
No eye contact.
Loss of communication.
Also lost eating skills ie holding a cup or spoon
Seemed to be more clumsy – not walking so well
Seemed to refuse to walk.”
Then there is a section saying “Presently very active” and I think you come on to a section dealing with his diet, is that right?
Q Can you take us through the rest of this page?
“Present diet [includes] potatoes, rice, veg, quorn, pasta, soya milk.”
With the same bracket is food which makes him worse and underneath that is:
“Food which makes him worse
Wheat – after 3/52
Q Is that reactive?
“Very reactive to external stimuli, aggressive → junk foods → few hours. Same sort of behaviour with junk foods, colouring agents and additives, antibiotics/medicines → hyperactivity, sleep problem.
Fruit → similar behavioural problems.”
There is a bracket which includes several of those topics which indicates that the diet was initially taken with a dietician, which means with dietetic:
“But Mum now does it on her own.”
Going back to the main body of the text:
“Main changes since dietary changes → less aggressive, less tantrums, less hyperactivity, happier/less distressed, more affectionate/more eye contact, lest obsessive...”
Q It is it finger watching?
A It may be. I am afraid I do not know.
Q To see what you are ascertaining in this history, you ascertained a significant concern that food has led to behavioural problems. There has been a change of diet to try and deal with that and things have improved but they have not resolved, would that be fair?
Q Over the page, on page 7, if we go halfway down, “OE” is “On examination”, is it not?
Q This is setting out what you observed in carrying out your examination?
Q In respect of behaviour you have:
“Very, very active”?
A Yes, moving.
“Moving from end to end of room”.
What is the next word?
Slight response to verbal stimuli.”
Q Lower down the page you have diagrams of part of the anatomy that you were examining?
A That is correct.
Q The last diagram on this page is that relating to the abdomen?
Q You recorded no evidence of faecal loading?
Q Does that mean you carried out a clinical examination to see if the child was constipated?
A The examination was the same in each child and if I had found faecal loading it might have been a possibility that constipation was a feature.
Q Looking at some of the history that has been ascertained on the child coming in, I want to cross reference to what you record when the child leaves the hospital. We will come back to other parts of the notes. If you turn to page 22 – it starts at page 21 which is your discharge summary of 16 October. I think it is a document that we have been through before. If we look at the second paragraph on page 22, you are in the middle of giving the background history that we have seen in the handwritten notes, is that right?
A Yes, I presume it is the handwritten notes, yes.
Q I think you told us the system would be that when you write this you would look back through your notes?
A This judgment would be based on that plus any other information that became available.
Q In the second paragraph on page 22 you say:
“At this time he began to lose various words and developmental disintegration appears to have taken place from there.”
What is it that you are seeking to say by that reference to developmental disintegration?
A I am seeking, I think, to make a note that, from the history as reported to me, there appeared to be a point in time when developmental regression appeared to have started.
Q To just to look at another role you played in this child’s admission, if we turn to page 80, we see a consent form there for Colonoscopy, Upper Endoscopy and Biopsy?
Q I think that is your signature indicating you obtained this consent from the parent who, it would appear, was the mother in this case?
Q As you told us when we have looked at these documents in other cases, this was the standard consent form if a colonoscopy was to be carried out?
Q If we turn to page 79, again a consent form, the same date, this time relating to Research Biopsies to be taken during a diagnostic colonoscopy and upper endoscopy. As you have explained, this would have been the standard form for extra research biopsies that apply to all children undergoing endoscopy?
Q If we turn to the discharge summary again, on page 21where it starts, looking at the last page of that the four page letter at page 24, if you look at the last paragraph, you make reference to an ECG in this case being performed?
Q You go on to say:
“An echo cardiogram needs to be performed when we see him next.”
Q I want to pick up on that. If we look at page 10 into the clinical notes for this child, towards the bottom of that page, do we see that there was a ward round on 30 September 1996 with Dr Murch?
Q There is a reference to the colonoscopy results and the Schilling test the next day. We then see “OE” for “on examination” indicating that a systolic murmur was found. Is that right?
Q With a arrow “→ need to organise echo”?
Q Then below that:
“? bicuspid bowel
radiation to carotids.”
With that in mind, looking back at your discharge letter, do you think that the information in the discharge letter about the need for an echo cardiogram arose from what had been raised on the ward round that Dr Murch conducted on 30 September?
Q An echo cardiogram would obviously be a clinical investigation based on concern about this child’s heart?
Q Put away Child 4 and turn to Child 5, Royal Free notes for Child 5. Ms Smith alerted you to the fact that there was an issue as to whether or not a lumbar puncture was performed during this child’s first admission into hospital in December or only on the second admission in January. For the Panel’s note this relates to charge 60 that Professor Murch faces. This is a relatively minor point, but the Panel will need to wrestle with this, so that is why I am going to ask you a few questions.
Can you look at your discharge letter again which starts at page 351. It is the second page of that letter that Ms Smith took you too. It starts at page 351 and it is page 352 we need to look at. Just to orientate ourselves with the document it is your discharge letter to the GP dated 21 December relating to this child’s admission on December 1996. At the bottom of page 352 we have the one sentence:
“We are still awaiting results of his CNS, MRI scan and lumbar puncture.”
The letter is clearly suggesting a lumbar puncture has been performed and that is what I want to explore with you. Can we look to see what other documents there are. At page 360, this document is signed off by another doctor, Dr Davey, at the bottom left hand corner, but can you help us with this document first of all. As a form, this is a quick way of notifying the GP about what has been going on during the admissions.
Q We can see at the top it is described as a Discharge Notification?
Q If we look towards the top right hand corner, a few boxes down, we see in type:
and a list of the things that have been done during that admission?
Q This is the place, is it not, where if procedures have been carried out, you would expect them to be recorded?
Q We can see from looking down that list that lumbar puncture does not appear there?
Q If we look at the note you made in January 1997 when the child came back in, so turn to page 7, please. You have been taken through the note before, I need not go through the details of it but it relates to the January 1997 admission, does it not?
Q It records, I think in your writing, half-way down, the lumbar puncture that you carried out?
Q Just looking at what you have recorded there, there is no suggestion in this note that this was a repeat or second lumbar puncture, is there?
Q Can we then see what information there is in the notes about CSF, and if we move on to page 431 now, we see a biochemistry result relating to CSF glucose and CSF protein. It says “sample taken on …” and then it says 15 January in the top left-hand corner. It says CSF glucose and CSF protein, so that relates to CSF that would have been the sample taken on 15 January, is that right?
Q If we go to page 423 next, and this is the document Ms Smith took you to when she asked you some questions, four lines down, again we have the date of 15 January 1997 and then to the right of that, in the middle column “Sample” and under that CSF protein and CSF glucose.
Q That clearly would relate to the date of 15 January.
Q She also asked you about the date below it, 5 December 1996, so can we just see what sample that relates to, because if we go to the middle column, where it has got “Sample 14952” and go a few lines down do we there see it says “Specimen type” and in the left-hand column it says “blood”.
A (After a pause) Yes.
Q Let us go through that again to check we are in the right place: left-hand side of the page, about five lines down, where it says 5/12/96, have you got that?
Q If you go to the right of that, in the middle of the page it says “Sample 14952”.
Q If you go three lines below it it says “Specimen type”, is that right?
Q And if we go to the left-hand column it then says “blood”.
Q Would you take the information that we see on this form to relate on 5 December 1996 to a blood sample, is that what it is relating to?
Q In other words, not CSF?
A Not CSF, no.
Q I will be corrected if I am wrong but I do not think there is any record in these notes of a lumbar puncture being undertaken in the December admission or of any CSF fluid samples being analysed in relation to that, and the only record we have is the one line in your discharge summary note: do you think that in the absence of any such record that that may have been a mistake on your part?
A Yes, it may have been a mistake.
MR HOPKINS: Dr Casson, that is the end of your ordeal from me.
THE CHAIRMAN: I am looking at Dr Casson and I think he is obviously becoming a pretty tired man and I think his concentration is starting to waver so I do not think it is right at this stage to continue. I had intended to finish your evidence, Dr Casson, but I do not think it is to be. There is a little bit more to go but what we can do is to start tomorrow morning at 9 o'clock and hopefully we can finish your evidence pretty early on in the morning.
Ms Smith, I hope that will not upset your programme of witnesses for tomorrow.
MS SMITH: That is very kind. Can I say, as far as my re-examination is concerned, I know we are none of us terribly good at estimating how long we are going to be but I do not anticipate being more than about 15 minutes but I am conscious that there are then the Panel’s questions.
THE CHAIRMAN: Absolutely, and I think that is something which is an unknown quantity, even to me, at this stage.
Dr Casson, I think the Council’s solicitor did have a word with you and I hope you are all right to return tomorrow morning to finish your evidence. I promise it will not be very long tomorrow morning. Can I thank you again for persevering with us. We will now adjourn and resume at 9 o'clock tomorrow morning. Dr Casson, the usual warning, you are still under oath and should not discuss your evidence in this case with anyone.
(The Panel adjourned until 9.00 a.m. on Wednesday 22 August 2007)