GENERAL MEDICAL COUNCIL
FITNESS TO PRACTISE PANEL (PROFESSIONAL CONDUCT)
Monday 20 November 2006
44 Hallam Street, London, W1W 6JJ
Chairman: Dr Jacqueline Mitton
Panel Members:
Mrs Leora Lloyd
Mr Alexander McFarlane
Dr Sameer Sarkar
Mr Arnold Simanowitz
Legal Assessor: Mr Robin Hay
CASE OF:
SOUTHALL, David Patrick
(DAY SIX)
MR RICHARD TYSON of counsel, instructed by Messrs Field Fisher Waterhouse, solicitors, appeared on behalf of the Complainants.
MR KIERAN COONAN QC and MR JOHN JOLLIFE of counsel, instructed by Messrs Hempsons, solicitors, appeared on behalf of Dr Southall, who was present.
(Transcript of the shorthand notes of T. A. Reed & Co.
Tel No: 01992 465900)
I N D E X
Page No
MRS H, Sworn
Examined by MR TYSON 1
Cross-examined by MR COONAN 34
Re-examined by MR TYSON 46
Questioned by THE PANEL 46
Further re-examined by MR TYSON 56
MRS D, Sworn
Examined by MR TYSON 57
THE CHAIRMAN: Good morning, everyone.
MR TYSON: Good morning, madam. So far as the delay this morning is concerned, it was caused by my side and I apologise. I am going to call Mrs H, but before then perhaps I can do some housekeeping, and I am grateful to my learned friend that further documents are now going to be permitted to be added to the bundle. Can I ask you, please, to look at C2 and insert into C2 a new section (k).
THE CHAIRMAN: I take it that this is in the section at the front, a continuation of 2 rather than behind any of the other tabs.
MR TYSON: Yes. It should follow 2(j). (Document handed)
The second bit of housekeeping is that I would ask you to look at 2(o), which should contain a letter dated 3 April 1990 from a consultant paediatrician, Dr Weaver, and I would ask that you put the document you are about to receive in front of that. It is a letter from the same paediatrician. One is to the parents and the one you are about to receive is to Dr Southall. (Document handed)
Can I now call Mrs H. I also indicate that my learned friend kindly informed me that I can lead Mrs H in a number of these matters by way of background. This witness deals with Heads of Charge 7 and 9 and is also involved in Appendix One and Appendix Two.
MRS H, Sworn
Examined by MR TYSON
(Following introductions by the Chairman)
MR TYSON: Mrs H, there should be a bit of paper and a pen in front of you. Would you please write your full names and address on that piece of paper?
A (The witness wrote on the piece of paper)
THE CHAIRMAN: Can I take this opportunity, Mrs H, to say that we will refer to your child as Child H. However, it does occasionally happen that names will slip out. Do not worry if that happens, but I would like to give a warning to any members of the press who are present that names of the families involved here should not be reported even if they inadvertently slip out.
MR TYSON: Mrs H, in the course of your giving evidence I shall ask you to look at two bundles of documents. One is what we have as C1. Towards the end of that bundle is a Section 2. Section 2 carries on in the next bundle, which is C2, so it is the back of C1 and the beginning of C2. I am going to ask some questions about the lead-up to your child coming to the Brompton Hospital in 1989, and I am going to do this by way of leading questions, so all you need to do is say yes or no or make any odd comment that you want to make. Was your child born on 20 September 1985 by Caesarean section?
A Yes.
Q Did the child need to be taken to the special care baby unit when he was born because he was cold and blue?
A Only very briefly. He was returned to me. As soon as I came out of theatre and regained consciousness he was brought to me.
Q Was he a sicky baby when he was born? Did he used to vomit his food?
A Yes. He used to have projectile vomiting which got progressively worse really. By “projectile vomiting” I mean when he vomited it would shoot across the room.
Q In November 1985 when he was two months old, did he have to have an operation for bilateral in-groin hernias?
A Yes, he did.
Q When he came back from the theatre, was there any problem with noisy breathing?
A Yes. When he was coming back from theatre we did not realise it was him who was being brought back because they put the child or baby on the trolley. You could hear his breathing coming down the corridor and when they brought him to us we realised it was our little boy. His breathing was very very noisy and in fact from that day on was quite noisy really. We were told later that that was a laryngeal strider.
Q At that time, as a result of what the consultant paediatrician at your local hospital did, did that consultant put your child on to an apnoea alarm?
A Not at that moment in time, no.
Q But a bit later.
A Yes.
Q In December 1985, he having been born in September 1985, was your child admitted to hospital with failure to thrive?
A He was admitted to hospital because every time we fed him he was being very very sick. As I say, he had projectile vomit. He was not gaining weight properly. He was not exactly skinny but he was not doing as well as he should, so yes he was admitted for failure to thrive. I was breast feeding him and it was very difficult to assess how much feed he was actually getting when I was breast feeding him and he was vomiting it back. So it was decided to put him on the bottle so that we could measure his feeds. Then it was thickened with Nestragel to make sure it stayed put in his stomach.
Q Did there come a time in February 1986 when your child was about five months old when there was an occasion when your husband was feeding him and the child suddenly went blue, limp and stopped breathing?
A Yes. Prior to that we had taken our son, following the in-groin hernia repair, we had taken him to the out-patients department and during that appointment they noticed in the waiting room that his breathing was very noisy, very irregular. He would breath very loudly and then he would stop, and they were getting very anxious. We were used to it, but they were a bit jumpy. The nurse said to me, “Has he got an apnoea alarm?” I said no, and she said, “I am going to ask Dr Hythe for one”, my apnoea consultant at the Lister. I said if you want to fine, but I am not going to ask for one. That is how we got the apnoea alarm. I am afraid I have lost track of your question.
Q I was taking you to February 1986 and I understand there was an occasion when your husband was feeding the child and he suddenly went blue, limp and stopped breathing.
A That is right. My husband was feeding him and he went blue and unconscious. I quickly got on the phone and said we are bringing in a child who is not breathing. As we grabbed him – it was a February morning – and I grabbed him off my husband because my husband drove, and as we went into the cold air he gasped and started breathing again. By the time we got him to the hospital he appeared perfectly normal and we said we would take him home, but Dr Hythe insisted that he stayed in. He said he would be happier if he did, and from that time he had what they call a number of blue attacks. At one time we were in supper, came back and they were giving him oxygen to bring him back. He had gone unconscious.
Q When the child was admitted on that occasion, was a special kind of tube, called a naso-gastric tube, inserted in the child to assist him feeding?
A Yes, it was. They thought he had something called an oesophagal fistula I think it was and they decided they would put a naso-gastric tube in to feed him, and it was decided that he would be transferred to Great Ormond Street Hospital in London.
Q Once the child reached Great Ormond Street, was there an incident there where the child went blue and unconscious, but you were told by the doctor that the EEG was normal?
A Yes. I think it was shortly after we arrived. They wondered if our son might have epilepsy because I have it and it is in the family. They decided to take him for an EEG and while he was in the EEG department, he went blue unconscious. The next thing I knew there were alarm bells ringing and they came in from all over. He regained consciousness. They took him back to the ward and it was very soon, within an hour or two, that they decided that it was not an oesophagal fistula, but that we needed to be on the respiratory ward. He was transferred to 5B in Great Ormond Street under the care of Dr Robert Dinwiddie.
Q So he is admitted first to the gastric ward and then transferred to the respiratory ward under Dr Dinwiddie?
A I think it was the gastric ward. We were not there long enough to know really.
Q Did he continue to have blue attacks when he was on that ward and was the child being transferred backwards and forwards between the respiratory ward and the respiratory intensive care unit next door?
A Yes, he was, and also during that time he was put into – I think it was an oxygen, it was not a tank but that kind of thing, because he was too big. They were doing readings on him and they were all over the place. His oxygen levels were dropping, etc., etc., and yes, he was back and forth between intensive care and the main ward.
Q Was it decided at that time to do a laryngoscopy or a bronchoscopy on the child?
A Yes, it was.
Q As a result of that were you told that the child had laryngeal stridor?
A Yes, we were told he had layrngomalacia and bronchomalacia, which meant when he breathed in his voice-box collapsed and crushed his airway and he could not breathe out.
Q Was there a discussion as to whether your child should have a tracheostomy or not?
A Yes, there was. There was a suggestion from the ENT team that they would do a new type of surgery which involved cutting away pieces of his voice-box. We were not sure about that and we consulted Dr Dinwiddie, who was obviously [Child H’s] clinician, well, he was the one person that our son was under mainly. So, we asked him what he thought and he said he thought he should have a tracheostomy because it would bypass his airway and give us a quick means of resuscitation should we need it. It turned out that the surgery the ENT team had suggested was very new. I think they said that when our son ---
Q I am sorry, we need not go down there.
A Sorry. Anyway, to cut it short, we had the tracheostomy on the advice of Dr Dinwiddie, yes.
Q I think you also just said that one of the advantages was that it would provide a quick means of resuscitation?
A Yes.
Q In March 1986, when the child was aged six months, did he have the tracheostomy and were you and your husband taught how to care for it, how to suction it, irrigate it, change the tube and how to deal with matters if the tube became blocked?
A Yes, we were.
Q Just in about three sentences, for the benefit of lay members of the Panel, tell us what a tracheostomy is?
A It is just an opening into the trachea which bypasses, obviously, the nose and mouth, so that the child breathes in through the hole in his neck, for want of simple terms.
Q Were you also shown how to resuscitate the child via the tracheostomy tube if necessary?
A Yes, we were.
Q Were you given oxygen and something called an ambubag in order to do that?
A We were, yes.
Q Thereafter, did your child continue to suffer apnoea attacks at any time and there was no pattern to them?
A Yes.
Q Were there occasions when you had to resuscitate Child H and did you do that in, as it were, a graduated way?
A I think in the time that we had our son at home we probably only had to resuscitate him using the ambubag about twice maximum. Mostly all you had to do to get him out of the apnoea really was to disturb him. It mostly happened when he was asleep, so you had to disturb him and then he would come back.
Q As time went on – and we are dealing with the child now up to about two years – did he have to be admitted to great Ormond Street because of asthma problems at one time?
A Yes. I took him for an out-patients’ appointment and he had been ill on the train going down. He was admitted to hospital because his breathing was not right and later on he was diagnosed as having status asthmaticus and was really quite poorly. It was the one time
I left him in hospital and my husband rang me to say they were moving him into intensive care. I do not drive, I could not get back, it was the middle of the night, and it was one of the worst nights at that point of my life, because my son was in trouble and I could not be there.
Q You are using quite a lot of technical terms, Mrs H.
A Sorry.
Q Do you have a background in nursing at all?
A I am a qualified nurse. I have not worked for many years, but yes. Sorry.
Q No, that is fine. Did there also come a time when your child had to have surgery for another inguinal hernia?
A Yes, he did. I cannot remember exactly when. I think it was around the same time as that admission actually.
Q In 1998, by which time the child was aged about two and a half years, did he also have a further operation to remove a cyst in his neck?
A Yes, he did.
Q Did he also have to have an operation because his stomach became twisted, so he has stomach volvulus?
A Yes. He was being very sick still, as I say, and eventually he was not well. He went into hospital for the thyroglossal cyst. He became ill – I think this is right anyway – and they did various follow-ups. They had done them previously, but on this occasion it showed that he had a twisted stomach, which I think is called a volvulus, so it was decided he needed to go to theatre for surgery for that. While he was in theatre they discovered that he had a diaphragmatic hernia and they repaired that. They also discovered that he had severe reflux and for that they needed to do what they called a Nissen’s fundoplication and they explained to us that they had to untwist his stomach and put a suture over his bottom rib to hold his stomach up so it did not twist. I think that Nissen’s fundoplication is slightly different but
I do not know.
Q So he had a stomach volvulus, a Nissen's fundoplication and a repair of the hernia?
A Diaphragmatic, yes.
Q During this admission did he have a number of apnoeic episodes when the child stopped breathing?
A Yes, he did. He was on the ENT ward as it happened for that because he had been admitted for the thyroglossal cyst and he was going through a particular bad patch with the apnoeas when he went to sleep, and so I deliberately sat at the nurses’ station at night and they saw to him and he had a quite a few attacks and I think on at least one occasion they had to use the ambubag to resuscitate him, to get him breathing again and give him oxygen, etc.
Q Did Dr Dinwiddie come over and see the child because I think the child was now on the ENT ward and Dr Dinwiddie was from respiratory. Is that right?
A Yes.
Q Did Dr Dinwiddie come and examine the child when he was on the ENT ward?
A Yes, he did. He came over and they called him because our son was having problems with apnoeas and it was on that occasion that Dr Dinwiddie told us that [Child H] had Ondine’s curse.
Q Ondine’s curse?
A Which meant that when he went to sleep, your brain tells you to carry on breathing, but in our son’s case it did not. That was the explanation we had at that time and that was the diagnosis.
Q Can you just look in a bundle please which we have as C2 and look under tab (j)? There should be a second letter within tab (j) and do you see that letter of 18 March 1989? Do you see that?
A Sorry, yes.
THE CHAIRMAN: Excuse me one moment. I think one of the Panel members has a problem.
MR TYSON: There should be two letters in (j). Has Mrs Lloyd got nothing in tab (j) or only one letter in (j)?
MR COONAN: We are missing it as well.
MR TYSON: Can I ask if anybody has not got the first letter in (j), which is dated 30 March 1990? There should be a second letter there of 18 March 1989, which we are just getting some copies of now.
THE WITNESS: I am sorry, what did you say the first letter was, Mr Tyson?
MR TYSON: Do not worry, Mrs H. We are just doing some housekeeping.
A I am sorry, I think I have got a different date, that is all, on the one I have got.
Q Let me ask you at this stage. Within your bundle (j) have you got two letters, one dated 30 March 1990 and the second dated 18 March 1989?
A Yes, I have. Sorry.
THE CHAIRMAN: Are additional copies being fetched?
MR TYSON: Yes, they are. (Further copies distributed)
(To the witness) If we look at the letter dated 16 or 18 March 1989, is this a letter signed by Dr Dinwiddie of Great Ormond Street Hospital, Consultant Paediatrician, and does it say:
“To whom it may concern
RE: [Child H] …
This letter is to confirm that [Child H] attended this hospital and that he suffers from Ondine’s curse (irregular breathing pattern) weakness of the breathing tubes and asthma. He also has tracheostomy (breathing tube inserted into the windpipe to help with his chest problems).
He will certainly benefit from an ultrasonic nebuliser for his treatment.”
A Yes, it does.
Q Is that a letter that you saw at the time?
A Yes. It is a letter that was given to me actually because we had recently moved from [named town] back to Wales, so it was for that purpose it was given to me.
Q We have had Child H in hospital having all these operations you have told us about, including the fundoplication and the hiatus hernia. We have got to the bit where Dr Dinwiddie told you that he came and visited the child on the ward and that the child had Ondine’s curse. Was there a discussion between you and Dr Dinwiddie as to what your child may need in order to deal with the problems that he had?
A He said he would need a ventilator but it had to be a particular type, a trigger system ventilator, which we understood was not available in this country at the time anyway. So, obviously it was not going to be something that appeared overnight, but that was what Dr Dinwiddie said that we needed, yes.
Q So he needed the ventilator and you said that there was a specific kind of ventilator but I think you used the word “trigger”?
A Yes.
Q If it was a triggered ventilator, how would that work? What was the triggering mechanism?
A The point was that if you put on a normal ventilator, the ventilator breathes for the child or the person. What Dr Dinwiddie wanted was a trigger ventilator which meant it would rely on our son triggering it. So, if his oxygen levels dropped for any reason it would actually trigger the ventilator, when his oxygen levels rose the ventilator would go off, because obviously a child or a person on a ventilator that is just getting breath anyway, the child would become dependent upon it.
Q So when there were discussions between you and Dr Dinwiddie about ventilators and triggered ventilators, did there come a time when you watched a daytime television programme where you saw Dr Southall on this programme?
A Yes. It was one of the early morning programmes that were on in the eighties,
I suppose, and I happened to be watching it and Dr Southall was on there talking about a new monitor that rather than telling you when the child stopped breathing, it would tell you when the child was about to stop. We wondered if that would be of any help to [Child H]. It sounded like a good idea, it sounded a feasible thing, and the next time we saw Dr Dinwiddie in Great Ormond Street my husband and I asked him if this ventilator would be any – sorry, not ventilator, if this monitor would be any good. He said that Dr Southall was a friend of his and he would contact him and ask him.
Q Do you now understand that Dr Dinwiddie then wrote a letter to Dr Southall in March 1989?
A Yes.
Q Could you look please at bundle C1 and the first letter under section 2 should be
tab (a). Did you see this letter at the time or only subsequently when you had access to the notes?
A No, actually I remember I did see it at the time. We were taking our son down to something like an ECG monitoring, or something like that, and we were given his records and I had a look and I saw this letter and I saw the question of Munchausen’s syndrome by proxy has been raised.
Q We are rushing ahead of ourselves a little bit.
A Sorry.
Q Did you see the letter at the time it was written?
A No. Sorry, no, I did not.
Q Can we look at it together, please? We see that it is a letter from Dr Dinwiddie to Dr Southall related to your son, who was born in September 1985, and this letter is March 1989, so he would be about three and a half years at this time. Does it say:
“I would be most grateful if you could please see [Child H] at his parents’ request. He has been having a number of unusual apnoeic attacks particularly associated with hypoxaemia and they are very keen to know if any of your new monitoring equipment would be helpful for him.”
THE CHAIRMAN: Mrs H, I wonder if you could keep your voice up. We do not always hear too well at this end of the room. If you can speak up – it is quite a big room – that would be helpful.
MR TYSON: That, as you just told us, was as a result of what you had seen on the television programme.
A Yes, that is right.
Q It says:
“His history is very long and complicated and I think it best to enclose copies of the case summaries from his numerous admissions here.
We have had him on the ward on a number of occasions for sleep studies and have not been able to document serious hypoxia during these episodes although he has certainly been pale at times. He has had various treatments as you will see including tracheostomy and more recently Nissen’s fundoplication, but according to his mother the apnoeic spells continue.”
Then there is a bit in manuscript which you see:
“The question of Munchausen by proxy has been raised.
He is also asthmatic and has been treated with Salbutamol nebulised on a regular basis and previously had Becotide but this has been stopped recently without any obvious detrimental effect.
I would be very interested if you could see him and arrange the necessary further investigations and advise in any other treatment which you think might be helpful in this particular situation.”
So did you then get a call from the Brompton as a result of which your child was admitted in September 1989?
A Yes, we did.
Q On that occasion, how long was Child H there?
A I think it was two nights that he was there and then he was discharged.
Q During those two nights and days he was there, did you meet Dr Southall on any occasion?
A Yes. We were in the ward with our son and Dr Southall came into the ward. He introduced himself to us, said who he was, said that he had only ever seen one child with the condition that our son had been diagnosed with. I have to say he seemed very charming. He did not spend any more than five minutes with us.
Q Can you recall the condition that he talked about?
A He referred to it as congenital hypoventilation syndrome, which I gather is the same as Ondine’s curse.
Q Could you look, please, at 2(b), which should be under the next tab from the letter you have just been looking at. The Panel has been taken through this document, but this is the clerking record of the doctor who first saw your child when he was admitted, and sets out, as you can see, that the history that you gave is that he had had:
“Difficulty in breathing since birth
[Patient] has been unable to breathe well since birth
- He was often breathless and intermittently stopped altogether going blue as a result.
- Feeding was difficult because of the breathlessness and was often followed by vomiting.
- At about 5 [weeks] he developed stridor following anaesthesia for Bilateral Herniotomy
- Parents complained [they] were not taken seriously until at nearly 5 [months] he collapsed in a local hospital and was referred to [Great Ormond Street] as a case of Tracheo-Oesophageal fistula.
- Thereafter his development regressed and it was another ... [year] before he could use his limbs.
- At [Great Ormond Street] he was said to have Laryngomalacea and Tracheostomy was done. A diagnosis of Ondine’s Curse was also suggested.
- However his problems occurred when awake as well as when asleep and sometimes apnoea can occur more than 40 times a night. Parents often have to bag him with the tracheostomy.
- He has been on an apnoea monitor since about 2 [months] ago ...
- For the last 8 [months] parents have been having a gruelling time waking up sometimes ’60 [times]’ in response to the alarm. They now feel exhausted and would like a system that will help the child breathe so that they can relax and sleep”.
It sets out that his development had been delayed, then the child was examined, various respiratory matters were dealt with, various other investigations were carried out, and then he is admitted for respiratory monitoring. Then it being a new hand, which I think the Panel has now become familiar with, which was Dr Samuels’ hand, and he said:
“Unusual story ... partial/intermittent hypoventilation syndrome.”
That is what you told us earlier you had discussed?
A Yes.
Q Then we see at the bottom there was a plan to “Need to observe respiratory abnormality … Discharge – re-admit when has problems”. Do you recall meeting
Dr Samuels and him saying that you can take the child home?
A Yes, we did.
Q During the time that you were in with your child in September 1989, was there any discussion with Dr Southall about any other paediatrician becoming involved in your child’s case?
A No.
Q When you were in with your child in September 89, was there any discussion with
Dr Samuels about any other paediatrician being involved in your child’s case?
A No, other than Dr Dinwiddie, of course, who was already my son’s clinician of record.
Q Sorry, I did not hear that, he was your son’s?
A Clinician of record.
Q Clinician of record.
A That is what we were told. That was the terminology that was used later.
Q Were you happy with Dr Dinwiddie being your child’s paediatrician?
A Yes. Dr Dinwiddie had been our son’s paediatrician for a number of years and we had great faith in him, and followed every instruction that he gave us to the best of our ability.
Q We see, after that admission, your child was discharged. Can you turn to 2©, please. We see this is a letter form the paediatric registrar to Dr Southall, and we see at the top right hand corner that your child was admitted on 27 September 89 and discharged on 30 September 89, and the “Diagnosis &Anatomical Site” says “Apnoeic episodes ? cause”, and the history is recording that:
“[Child H] was admitted for overnight monitoring. He has had difficulty in breathing since birth with intermittent apnoeas and cyanosis. He has a diagnosis of laryngomalacia made in Great Ormond Street in the past together with fundoplication. On examination he was well. Tracheostomy tube was in place. There were no other abnormal signs.
TREATMENT AND PROGRESS: Overnight monitoring was carried out which was normal and the plan is to readmit him when he is actually having cyanotic episode for repeat recordings.”
So we have reached September 1989. Did the child, after those sleep studies, then have to return to Great Ormond Street because there were problems with the child coughing, going red, then blue and then becoming unconscious?
A Yes. That had become a problem in the recent months really leading up to that admission. He was admitted on that occasion for ventilator assessment. During that visit to Great Ormond Street in February 1990 they witnessed him coughing, what they called coughing and stopping. He would cough, he would go blue, he would collapse on the floor, and they diagnosed that, I am not sure which it was, hypercapnoea or hypocapnoea, but it was something to do with blood flow crossing the lungs. I do not really understand it, but it was something to do with that.
Q The child was admitted to Great Ormond Street in February 1990 for a ventilator assessment, and during the course of that these coughing and stopping episodes were looked at?
A Were noted, yes.
Q Was the child at that admission also taken to the intensive care unit to be connected to a ventilator for an overnight trial?
A They thought they had found a trigger system ventilator that was suitable for my son. He was taken to the intensive care and put on it for one night. It turned out it did not actually do what it was supposed to do. It was designed to give a number of breaths per minute, I do not know how many, say four breaths a minute, which meant it automatically did that, rather than relying on our son triggering it himself, so obviously that was not suitable, that was something that Dr Dinwiddie and ourselves wanted to avoid. During that admission, in the intensive care unit the following morning, when our son had been taken off the ventilator, we were told it was not suitable, we saw the registrar who told us that he wanted us to take our son back to see Dr Southall because he wanted to do a test on our son that involved giving him a gas to breathe in to stall his breathing and then stand by to see what happened, to see if he was resistantly apnoeic or if his apnoeas were self-accommodating and he would start on his own. We were not keen on the idea, we did not understand what it was about, we were worried about our son’s safety and well-being if that kind of test was carried out, and
Dr Habbibi said it was down to us that our son was alive, without us our son would have been dead and most people would have put him in an institution the minute he was born and forgotten he existed, and that really shocked us.
Q Just moving on. As a result of what the registrar said to you, did the child go back to the Brompton Hospital in March 1990?
A Yes. He also told us that Dr Southall had the money and the resources to develop a suitable ventilator for our son, so on that basis we agreed to take him back.
Q Can I ask you now to look at section (d) in these notes. We see there are some clerking notes here which deal with the four problems that we can see on the first page there, that your child was admitted routinely for overnight monitoring under the care of Dr Southall, five problems were identified:
“cyanotic episodes and abnormal breathing; coughing bouts
stridor
jitteriness
developmental delay
cow’s milk/soya intolerance”
We see a history is set out over the next few pages. Can I take you to the page which should have “9” at the bottom of it. Under the paragraph that is headed “Summary” it says:
“4½ year old [male with] numerous problems but particularly abnormal breathing pattern
cyanotic episodes
apnoeic spells
For [overnight] monitoring
- neurology and dermatology opinions may be [useful]
- assess [something] lung function…”
Did the child have in March 1990 overnight monitoring?
A Yes, he did, I think it was two nights.
Q Were various leads attached to his body, which were then attached to various monitors?
A Yes, they were. We were in a cubicle overnight, and I was left in there with him. He had, as Mr Tyson says, various leads on him. On this time he had to wear a very, very tight vest, which was clearly not comfortable for him, and the sensors had burnt his skin slightly the previous occasion so he was not keen on it this time round obviously. I was encouraged to leave him, as was my husband. They had got a room for us a long way away from our son, but he was upset, he did not want to be left, and so I stayed with him, and he did, as
Mr Tyson says, I think it was two nights’ sleep studies.
Q Going over to page 10 we see the record for the next day, which is 16 March, where it says:
“Apparently had a good night [with] no problems ….. to be repeated again tonight ….. [discuss with] MS”, and I think that is Dr Samuels.
A Yes.
Q Did there come a time after the two nights of recording that you spoke to a doctor about the results?
A Yes, it was Dr Martin Samuels. He came and told us that they wanted to remove my son’s tracheostomy, they wanted to give him experimental drugs for his asthma, they wanted to put him on home monitoring, which was the monitor that we had mentioned before, and did I say they wanted to put him on continuous oxygen therapy? Our son was in normal school at that time, he was---
Q You have got to go a bit slower because this is important and people have got to write things down. So you say Dr Samuels gave a list of things that he wanted done. Can we just deal with it slowly. What was the first thing that he said?
A He wanted to remove his tracheostomy, he wanted to give him experimental drugs for his asthma, they wanted to put him on the monitor for overnight recording, and they wanted him to have continuous oxygen therapy. I am not clear if that was during the day and the night, or just the night.
Q What did you think of those suggestions?
A We were surprised by them because it was not the reason we had been told we had gone back to the Brompton Hospital. We had been told we were going back because Dr Southall had the money and the resources to develop a trigger system ventilator. So we were very taken aback because---
MR COONAN: Can you slow it down?
MR TYSON: Yes. Again, keep very slow, because this is an important section of your evidence. You said, “We had gone there because we thought we were going to investigate the trigger ventilator system”, and you were taken aback, you said. Why were you taken aback?
A Because our son had been a patient of Great Ormond Street for several years. As
I said, Dr Dinwiddie, we thought, was his consultant, we were certainly under that understanding, and we were following the treatment plan that Great Ormond Street were recommending. It was not something that we were wanting, it was something that
Dr Dinwiddie at Great Ormond Street was recommending. So we were surprised. Sorry,
I am going too fast again.
Q Stop. You said that this plan that was being put to you by Dr Samuels was not the plan that you were following at Great Ormond Street. In what way was what was being put forward by Dr Samuels separate and different from what was being put forward at Great Ormond Street?
A When our son was a patient in Great Ormond Street, I am going back actually to February 1990, he had had to go to theatre for a look down his throat to see how his laryngomalacia was doing. During that admission he had two respiratory arrests in theatre, and they brought him back to us and they said that he had had two respiratory arrests, they had never seen anything like it before, it was definitely not an ENT problem, it was a respiratory problem.
Q Keep pausing and watch pens.
A I have forgotten your question, Mr Tyson, actually.
Q Well, the question was in what way was what Dr Samuels was recommending different from what Great Ormond Street was recommending?
A We had been told it was a respiratory problem he was having the coughing and stopping. There was no intention by Great Ormond Street at all of removing the tracheostomy at that time certainly. It was just totally different – the removal of the trachy, the experimental drugs – it was not what we were expecting, so we asked – sorry.
Q You were not expecting it because it was different, in view of the experimental drugs and the removal of the tracheostomy.
A And the oxygen therapy.
Q And the oxygen therapy. As a result of what you were told by Dr Samuels, did you ask to see anybody else?
A Yes. We asked if we could see Dr Southall. Martin Samuels referred to Dr Southall quite often as his boss, so it seemed logical that we would ask to see Professor Southall.
Q Were you able to see him?
A No. A message came back via Dr Martin Samuels saying that Dr Southall was far too busy to come and see us, he was doing an interview for Sky television.
Q When the plan was put to you by Dr Samuels, did you have any discussion about whether or not you accepted this new plan?
A We said we would like to discuss it with Dr Dinwiddie. As I have said before, we had great faith in him, we had always followed his instructions, but we did agree that we would take the monitor home with us, and we asked if we could go home to give us time to discuss this treatment plan with Dr Dinwiddie. We were given lessons on resuscitating our son by Sister Jane Noyce in Dr Southall’s team, and we left the hospital and took Dr Southall’s monitor with us.
Q So you were trained in the use of the monitor?
A Yes, we were told how to put the sensors on.
Q Then you left, after training, with the monitor?
A Yes. We went home. We were very keen, as I say, to discuss this treatment plan with Dr Dinwiddie.
Q Just pause there for a moment. In the March admission, did you see Dr Southall at all?
A Absolutely not. As I say, we requested to see him, because Martin Samuels referred to him as his boss, and he was too busy doing an interview for Sky television to come and see us.
Q Can you put away bundle C1 that you have been looking at, and go to the first tab in C2, which should be under (e). This is an extract from the nursing records during that admission at the Brompton in March, Mrs H. Do you see that, half-way down, there is an entry for 16 March recording that the child slept well overnight,
“Cared for by mum [various measurements] PM up and about all care given by parents. Seen by Dr Samuels. To go home with PCO2 monitor”.
A Yes.
Q This session that you had with Dr Samuels, about how long did it take?
A It was not very long at all. I could not put a timescale on it, but less than five minutes. Slightly more than we had spent with Dr Southall the time before, but not very long at all really.
Q Dealing with the March admission, the two or three nights, can I ask you two questions. First of all, was there any discussion about involving any other paediatrician with Dr Samuels?
A No.
Q Was there any discussion with any other doctor at the Brompton about involving any other paediatrician?
A No, there was never a discussion about involving a local paediatrician at all.
Dr Dinwiddie was my son’s consultant and we had discussed with Dr Dinwiddie when we moved from (town named) to (town named) about a local paediatrician. We were not keen because Dr Dinwiddie had known my son and treated him, and my son, to quote
Dr Dinwiddie, was an unusual case and we did not really want to start off with another hospital who did not know him.
Q I need to control both your speed of speech and also I am afraid what you are speaking about.
A I am sorry, I am Welsh. We tend to talk a bit fast in Wales.
Q You told us that you did not see Professor Southall at all on that occasion.
A We are talking about the March, no.
Q Were you told, prior to discharge, the results of the sleep study that had taken place?
A Normal, I suppose. I do not recall any results as such but as we had not been told any different we assumed they were OK.
Q Would you look, please, at Tab (g), the third tab in in C2? Turning over the page we see that this is a document written by a Dr Bush, who was the paediatric registrar to
Dr Southall. It is what is called a discharge summary. We see going back to the first page that your son was admitted on 15th and discharged on 17 March 1990. There was a long history set out there by that registrar dealing with matters that you have told the Panel about, including his jitteriness and developmental delay. Going over the page, there is a record of the examination and the fact of the trachostomy was noted,
“He was pink. There was no digital clubbing. His breathing was noisy. Pulse 104. Heart sounds normal, cardiovascular exam normal, chest hyperexpanded with widespread bilateral expiratory wheeze. Scars from the abdominal surgery were noted and a faint arythomatous macular rash on the lower abdomen on the right and mild right convergent strabismus was noted. There were no other abnormal signs. Treatment and progress: He was monitored overnight and the results will be sent on to you. Follow up will be by Dr Southall’s dept”.
Do you agree with that?
A I do, but can I just point something out and I have never seen this document before? It talks about a macular rash. In fact that is a birth mark our son was born with. He still has it to this day. It is on the underside of his body and it changes colour. I say it changes colour; it goes slightly darker purple.
Q After you had been discharged and gone home with the monitor, how did the monitor work that first night?
A We used it for one night and it just went off all the time. We were checking on our son. He seemed fine. We really reached the conclusion that he was too old for the monitor, that it was probably designed for younger children. Our son was obviously very mobile. He was four year old at that time. So it was not very successful, shall we say?
Q As a result of that overnight test that you performed, did you telephone anybody the next day?
A Yes. The whole point of going home was to discuss this with Dr Dinwiddie. I rang him and he said it was not what they wanted. It was not part of his treatment; to return the monitor to Dr Southall and to continue to follow his treatment plan.
Q Pausing there, you spoke to Dr Dinwiddie and, as a result of what Dr Dinwiddie told you, did you decide to stay with the Brompton plan or stay with the Great Ormond Street plan?
A Obviously the doctor was familiar with his patient. As I have stated already, he was the clinician we had faith in and we were obviously going to follow his advice. So
I telephoned Dr Southall at the Brompton Hospital.
Q As a result of your conversation with Dr Dinwiddie, you then telephoned Dr Southall?
A Yes, Dr Southall at the Brompton Hospital. I thanked him very much for his time, because I was taught to be polite to everybody regardless, so I thanked Professor Southall for his time, and he said, “Return my monitor then” and slammed the phone down on me.
Q In the clinical setting is that the last time that you had any contact with Dr Southall?
A Yes. My total involvement with Dr Southall was less than five minutes.
Q Do you now know that following that admission, a letter was written by Dr Southall to Dr Dinwiddie?
A I do now, yes.
MR TYSON: Madam, I do not know whether this might be a convenient time, but I understand from messages I am getting that my witness would quite like a break.
THE CHAIRMAN: Yes, that is fine, Mr Tyson. We will take a break now. We will break for 20 minutes. I need to remind you, Mrs H, that while you are on oath you should not discuss the case or your evidence with anyone.
(The Panel adjourned for a short time)
MR TYSON: Mrs H, you told us just before the short break that you had had a discussion with Dr Southall and he had put the phone down on you. You had decided to remain with Dr Dinwiddie.
A Yes.
Q Did there come a time when you saw a letter that had been written by Dr Southall to Dr Dinwiddie after this admission?
A Yes.
Q Would you look at the bundle in front of you at (i)? Can you just read that with me? It is a letter dated 22 March 1990 to Dr Dinwiddie at the Hospital for Sick Children at Great Ormond Street from Dr Southall. It says,
“Re Child H: I thought I had better write to you about our latest contact with Child H and his family. The upshot of it was that we wasted a lot of valuable time, at the end of which the parents decided that they would like to continue along their own route basically with the parental belief that Child H has a severe, rare illness which warrants intensive care treatment at home.
I would just summarise his past history as we saw it, to try and put into context our recommendations. Child H has had a history of cyanotic episodes, wheezing and cough and has variably been diagnosed as having bronchomalacia with, or without, additional reversible airways obstruction. His previous treatments include nebulised intal, ventolin, becotide and acetylcysteine. A nebuhaler was suggested by the local consultant paediatrician in Cardiff, Dr Weaver, but was refused by Child H’s mother. He has had a Nissen’s fundoplication and a tracheostomy. The tracheostomy was performed for laryngomalacia but the parents now believe that it is most valuable for resuscitation purposes”.
Pausing there for a moment, Mrs H, when it says it is most valuable for resuscitation purposes, who was it who told you that it could be used for resuscitation purposes?
A Originally it was Dr Dinwiddie in the admission which we talked about before, when he came into the ENT ward and they told us that my son had Ondine’s curse. But after that it was in the admission in 1990 when our son stopped breathing in theatre and they told us it was not an ENT problem, it was most definitely a respiratory problem. He did the tracheostomy for reasons of ventilation.
Q Going back to the letter,
“The cyanotic episodes are intermittent and are treated by positive airway pressure applied through the tracheostomy. The parental view is that the tracheostomy is essential for resuscitation, that some kind of trigger ventilator is needed to cope with apnoeic episodes. They consider that Child H is neurologically normal, although it is pretty obvious that he has a tremor and central ataxia”.
Did you consider Child H to be neurologically normal at this time?
A My son had been born with a tremor. He just had a tremor, that was part of my son, but yes he had had problems initially, during the period in hospital in 1986 when, prior to the tracheostomy, he had had a lot of apnoea attacks and cyanotic episodes. We had seen a deterioration in him at that time in that he had been reaching out – I remember the Sunday before we were in church and he reached out and touched my friend’s wedding ring because he could see it glistening in the sun. He did lose that ability for a little while, he did not reach out, but we worked him very hard. We rolled him over balls, we did all sorts of things and we got him back basically, so yes, we did consider him to be normal.
Q The letter carries on in the third paragraph:
“Our impression is that the parents are used to Child H as being chronically sick. They want the tracheostomy. They want the ventilator. They like the idea of him having a rare illness and they treat Child H as if he was a baby”.
Did you like the idea of your son having a rare illness?
A Not at all, no. We wanted a normal little boy. He was not treated as being chronically sick. He was encouraged, in spite of the trachy, to lead a perfectly normal life. He had two elder brothers and we encouraged him to do everything that they could do. He was in a normal school. He was reading. He loved life. He was a wonderful little boy to have around and no, we did not view him as chronically sick. We did not even want him to have a ventilator. We were purely following the advice of Dr Dinwiddie. If at any point Dr Dinwiddie had said it was needed, that would have been the end of the subject.
Q Going down to the last paragraph, he says,
“Our suggestion to them was that firstly they use a transcutaneous PO2 monitor whenever he is asleep, that they get used to his baseline values and that in the eventuality of him showing lower baseline values, they institute temporary additional inspired oxygen”.
Pausing there, is that the advice that you understood you got from Dr Samuels?
A Yes. I mean that is put quite clear. As I said we were not sure about the inspired oxygen, whether that was all of the time or just some of the time, but it makes it clear here what he was talking about.
Q It continues,
“Secondly, we felt that reversible airways obstruction is a component of his problem and that maybe nebulised budesonide would help”.
Was that discussed with Dr Samuels?
A I guess that was the experimental drug for his asthma that he talked about?
MR COONAN: She never answered the question.
MR TYSON: She did answer the question. Were the words “nebulised budesonide” mentioned or were the words, “experimental drugs for asthma mentioned”?
A Experimental drugs for asthma.
Q The letter continues,
“In the long run we feel that if his cyanotic episodes can be controlled by monitoring and additional inspired oxygen, that he might not need the tracheostomy and that this could be closed”.
Was that how it was put to you by Dr Samuels?
A We were just told they wanted to close the trachy. It sounded to us like it was just something they were going to do, close his trachy and put him on experimental drugs for his asthma.
Q He says,
“We also feel strongly that his neurological state has not been adequately investigated. We feel that his tremor and ataxia could go along with a brainstem or posterior fossa problem which in itself could be related to its cyanotic episodes. We also feel that it is vital that child H has his overall care managed by a local paediatrician”.
You gave evidence about that before the coffee break:
“We put this regime to the parents last week and they initially said that they would like to accept it. We therefore spent 24 hours training them in the use of the monitor. They were discharged with this on Friday night of last week”.
Just pausing there, did you initially say that you would like to accept this or did you make it subject to any conditions?
A No, we told Dr Samuels that we wanted to discuss the “treatment plan” with Dr Dinwiddie. We agreed to take the monitor because obviously we lived in South Wales at that time and it would be a long way to come back to London just to pick up the monitor, so we said we would take it and then discuss with Dr Dinwiddie the so-called treatment plan.
Q The letter continues,
“In communication with them today, they have decided to reject this advice and go for the triggered ventilator approach. They are therefore returning the TCPO2 monitor to us by registered post”.
Is that a reference to the telephone call you had with Dr Southall?
A I presume it is, yes.
Q It goes on to say,
“Martin Samuels and I both feel that these parents are not acting in the best interests of Child H’s long term future. We feel that they have become involved with two special health authorities rather than their local hospital intentionally. We are very suspicious of their motives and view Child H’s long-term prognosis with great concern. I have left it with the parents that should they change their mind, we are here and willing to implement the approach outlined above. Please do not hesitate to contact us again if you feel that we can be of assistance. I am sorry that we do not seem to have been able to get through to these parents”.
Dealing with one aspect of that paragraph, Mrs H, he says,
“We feel that they have become involved with two special health authorities rather than their local hospital intentionally”.
What do you have to say about that?
A Our son was a patient in Lister Hospital in Stevenage. We were told he needed to go to another hospital. We had the choice I think of Addenbrooke’s Hospital, because it was close to Stevenage, or Great Ormond Street in London. We chose Great Ormond Street because obviously any parent wants their best for their children and we believed Great Ormond Street would be the best. As for the other one, as you know I saw a programme on television. I did not know it was a separate health authority. It was in London. To me they were one health authority so there was no intention to get involved with two, it was just an intention to see Dr Southall to ask if his monitor would be any use for our son.
Q We see that letter is copied to three people. Who is Dr Bailey?
A Dr Bailey was our GP.
Q Dr Weaver, who is that?
A She is the consultant at the local hospital, or what was the local hospital to us then, or one of them. Dr Weaver was the paediatrician at the University Hospital Wales, Cardiff.
Q Had she in the past been involved in any aspect of the care of your child?
A When we went back to Wales ---
Q Just pausing there a moment, you told us that you had lived in Stevenage for a time and then you moved back to Wales. At about what time are we talking about? What date are we talking about that you moved back to Wales?
A We moved back in 1988. We moved back to Wales. Both my husband and myself are Christians. I am getting there; I am getting to the point. We went back to what had been our local church before we moved from Cardiff to Stevenage in 1981. It seemed logical that we would go back to the church we attended previously; we had friends there, the best man from our wedding went there, and relatives of mine went there. However, so did the paediatrician, Dr Weaver. We were not aware of that at the time. During one meeting that we were at we were introduced to Dr Weaver and she asked us if we would like her to see him, our son. We were not very keen. I had worked with Dr Weaver in the past, I knew her. She did not remember me, but I remembered her.
Q Can I just cut to the chase here.
A Sorry. We had seen her once, yes, because at that meeting, that morning, she asked if we would like her to see him.
Q She had seen the child.
A She had seen him once. When she asked if we would like her to see him we could not really … It did not seem very polite to say no, so we did see her once.
Q You see the third person there mentioned is a consultant paediatrician at the Royal Gwent Hospital. Had the child ever been to the Royal Gwent Hospital?
A No, it seems to me it was actually Dr Southall who was trying to involve another health authority, because we had never been there.
Q Had there been any discussion with either Dr Samuels or Dr Southall about the overall care of your child being managed locally?
A No.
Q Were you asked for your consent by anybody to involve a paediatrician at the Royal Gwent Hospital?
A No, there was no need – to involve one, I mean, not for the consent.
Q Were you asked for your consent to a letter being sent to any paediatrician at the Royal Gwent Hospital?
A No.
Q Were you asked for your consent to this particular letter being sent to the Royal Gwent Hospital?
A No, absolutely not.
Q Do you have any views, Mrs H, about the fact that this letter was sent to an unnamed local paediatrician?
A I have quite a lot of views about this letter actually. My belief is that Dr Southall saw my child as nothing more than a lab rat. He was determined to get his test, never mind what, and ---
MR COONAN: I am sorry, but ---
MR TYSON: Yes, it may have been the width of the question which led to the answer.
A Sorry.
Q In terms of confidentiality, did you have any views about this letter, Mrs H?
A Yes. I mean, it gives confidential information. Why was it needed, that is the point? We were under Dr Dinwiddie. There was not any need to contact another hospital. There was no reason why we should go to it. It was a breach of confidentiality for which we were not given any choice, and it was an unnecessary breach of confidentiality. I would like to say that in this I drew exception to the fact that Dr Southall – I have just got to find it; excuse me a second – refers to my son as “its.”
Q Can I ask you, please, to look at section (o) in the bundle that you have in front of you. Can I ask you to look at the letter dated 3 April 1990, which has got the letterhead of the University Hospital of Wales. It is a letter that is written by Dr Weaver, who is one of the recipients of the letter we have just been discussing, to Dr Southall. I just want to ask you about the first paragraph, which says:
“Thank you very much for sending me a copy of your letter to Dr Dinwiddie. Everything I receive from specialists about this little boy confirms the impression which I made within 5 minutes of meeting him, that is they are a very unusual family! I notice you also sent a copy to the Paediatrician at the Royal Gwent Hospital in Newport, so I imagine that the parents have involved yet an other Paediatrician in [Child H’s] care – there are now three district Health Authorities in South Wales that have some involvement with them.”
Was it you involving a paediatrician at the Royal Gwent or was it Dr Southall involving a paediatrician at the Royal Gwent?
A Dr Weaver in this letter says she “imagined” it, and that is right. We were not doing it. Dr Southall had involved the other health authority, not us.
Q Then, going over the page, you see a letter to you by Dr Weaver of the next day where she indicates:
“I have recently received some further correspondence from my colleagues in London, and I thought I would offer to see [Child H] with you if you would like me to do so.
It is quite a long time since I saw him, but I know he has been attending at Great Ormond Street and I shall be interested to see how he is getting along.
If however you find that the Paediatrician at the Royal Gwent Hospital is easier to reach, then please just telephone and cancel the appointment which I am enclosing. Bedwas is just on the border between the District Health Authorities so that either hospital is appropriate for you.”
Is the Royal Gwent Hospital and the University Hospital about equidistant from that town there mentioned or not?
A No, they probably were not actually.
Q Which is the closest, as far as you know, or the most convenient one to you? The University one or the other one?
A Yes, the University. Having said that, if we had taken our son in, in an emergency, there was no casualty unit at UHW at that time, we would have taken him to Cardiff Royal Infirmary. Thankfully, we never had to take him anywhere. I suppose it would have been a toss up of which one we had gone to, but it never happened. Bearing in mind that we were being accused – and we did not know at that time – of Munchausen’s syndrome by proxy and one of the things apparently that go along with that is “doctor shopping.” You could say that we were being encouraged to “doctor shop” here, and surely if my husband or I, we were jointly accused of Munchausen's syndrome by proxy, if either of us had Munchausen's syndrome by proxy we would have jumped at the chance of another visit to another hospital.
Q I am now going to deal with matters that happened much later when you were seeking access to your medical records. Can I ask you, whilst I am going through this section of your evidence, to have in front of you section (k) in bundle C2, please? Again, I am grateful to my learned friend indicating that I can lead the witness through the documentation in this section. Did there come a time, Mrs H, where, as a result of the involvement of Dr Southall with your child, that the child became a ward of court?
A Yes.
Q In the wardship proceedings were you represented by solicitors Cartwrights Adams & Black?
A We were.
Q Turning to the first page in section (k), is that a letter dated 5 November 1991 and we see at page 2 that it is to the Medical Records Manager at The Royal Brompton. is that a letter from your solicitors? Perhaps I can just take you to the first two paragraphs:
“We act on behalf of the above named whom we represent in wardship proceedings concerning their children …
At present the proceedings revolved around [Child H] and we confirm that a full Wardship Hearing is listed returnable on the 15th November …”,
and it indicates the specialist that you had retained to advise you in this matter from the Department of Child Health at Bristol Maternity Hospital.
“He has however indicated that it is essential that he sees all medical records, to include all nursing care records, held by your goodselves with regard to [Child H].”
Then the bottom paragraph says:
“Accordingly, we enclose herewith our Clients’ signed form authority for release of these records and we would be grateful if they could be forwarded to us or sent direct to Dr Peter Fleming by return.”
Is that a letter that you recall, that in 1991 a request was made by your solicitors for the notes in relation to this matter?
A Yes. They made a request to every hospital he had been involved with. That included Great Ormond Street, but all the records at Great Ormond Street had gone missing. Anything prior to May 1990 no longer existed and to this day have never been found.
Q Then if we go over to the page which has at the top “A3”, do we see that this is an internal document from the Assistant Unit General Manager, dated 6 November 1991, to Dr Southall, about your child:
“We have today received a letter from a solicitors representing Mr and Mrs H in relation to a wardship hearing on the 15th November 1991.
They have requested disclosure of [Child H’s] medical records, and I am writing to you to requesting consent to copy and disclose. Many thanks.”
Do you see the manager has written under there “Consent Given” and I do not think it will be disputed that that is the signature of Dr Southall. You have since become aware of something called an SC file, for reasons that we will come to in the course of this hearing. Do you know whether records were actually sent to Dr Fleming at that time?
A Nobody knew that an SC file existed. All we had were the Brompton records and the GP records. The Great Ormond Street records, as I say, had gone. There was no SC file, nobody knew it existed, and so we had to rely on the records I had, which is largely where these have come from I think that you have got today; they have come from me, in relation to Great Ormond Street. No, we did not know of an SC file. We were told it was the GP’s records that had saved us.
Q Did there come a time in 1995 where you instructed solicitors, Messrs Huttons, to consider giving you advice on taking proceedings against, amongst others, the Brompton Hospital, dealing with the way that you felt that your child had been treated at the Brompton?
A Yes, in a roundabout way. We could not afford to litigate; we have not got money for that kind of thing, but I guess you would say it is a fishing expedition. We knew our son – and I am going to mention it because this is the truth – had been part of a research project and we wanted to see if any documents that showed what we were saying was right would come to light if we went to search for documents. In fact, that is what happened.
Q In 1995 did you ask your solicitors to obtain documents from, amongst other places, the Royal Brompton Hospital, with the idea of suing them, but in particular the idea to look at them to see the medical records?
A It was a fishing expedition, yes.
Q Are you aware that by 1995 Dr Southall had moved from the Brompton Hospital to Keele University?
A I was aware of that, yes.
Q In relation to the request made by your solicitors could I ask you please to look at the letter with “A4” at the top and numbered 4 at the bottom?
A I am sorry, I have missed that instruction.
Q It is the next page in the documentation we are looking at. It has got a number 4 at the bottom.
A Right, I have got it.
Q Did you become aware that this was a letter written on 22 February 1995 by Jennifer Jones, who we can see is the General Office Research Manager at the Academic Department of Paediatrics at North Staffordshire Hospital?
A Yes. I have only recently become aware of this letter. Can I just say that the SC file, it was claimed when we actually got a small part of it, that it was a social care file.
Q You are running ahead.
A Sorry.
Q We are back in 1995. From this letter do you note:
“Following the current legal communications regarding the above family”,
i.e. your involvement with Messrs Huttons,
“Professor Southall has asked me to request copies of any records you may be holding”,
that is, your local authority,
“on the [H] family. I have to say that subsequent to the move from the Brompton Hospital to North Staffordshire we can find no trace of relevant paperwork on this family.”
A Yes.
Q You note now that that was written.
“I understand from Professor Southall that you had copies of medical records, various statements, etc. necessary to pursue this matter into Court.”
A Can I just say, if this was a social care file, you would expect there to be social ---
MR COONAN: I am really going to object to this. This is a document which does not affect this matter.
THE WITNESS: Okay. Sorry.
MR COONAN: I understand my learned friend’s difficulties, but there are limits.
MR TYSON: I acknowledge I have reached the limit and I am moving on.
(To the witness) Did there come a time in March of 2000 where you contacted the Chief Executive of the North Staffordshire Hospitals to ask about an enquiry being made into Professor Southall, and also to find out if there were any medical records held on your child at North Staffordshire?
A In March 2000, yes.
Q Could you look, please, at a letter, which is letter 5 in the bottom right hand corner, and this is a letter from the Chief Executive to you, and did you receive this letter in March 2000, saying:
“Dear Mrs [H]
I am writing to confirm our telephone conversation of 23 March 2000. You were ringing because you were concerned about the involvement of Professor David Southall in your son’s treatment at the Great Ormond Street in 1991 during the time when Professor Southall was a Consultant at the Brompton Hospital.
Your request in relation to North Staffordshire was that we should seek to ascertain whether or not any medical records are held on your son at the North Staffordshire Hospital and whether or not any covert video surveillance tape exists.
You also indicated, however, that you did not wish Professor Southall to know that you had made this enquiry. I agreed, therefore, that we would review the files which are held within the Child Health Department here at the Hospital, but I gave you reassurances that we would not contact Professor Southall regarding your queries. Once we have made a search of our records I will write to you again with our response.”
Did you get a response in relation to that query that you wrote, Mrs H?
A Yes. We were told by both David Fillingham and the Data Protection Officer at North Staffs that no records existed on our son or our family.
Q You mentioned a name there; is that the Chief Executive?
A Yes, it is.
Q You were told by him and by the Data Protection Officer.
A Yes. I think you had to pay a ten pound fee, or something, to the data protection people for them to look, and we paid our fee. I have got no correspondence in relation to that, but we were told that nothing existed.
Q That is in March 2000. In May 2000 did you contact a Mr Chapman at the Royal Brompton Hospital to ascertain whether there were any matters relating to your son still held at the Royal Brompton?
A Yes. I mean, obviously the Brompton Hospital should have medical records because our son had been to that hospital, and we wanted to know if again they had the protocols that we knew existed, they had been part of our son’s medical records, we found that out in 1995, and we wanted to get copies of those as well, but I was told by Mr Chapman that the file no longer contained the protocols with the ethics approval for research, and all he sent was the hospital records as they stood at that time, but he told me how I could get the original set of records.
Q Pausing there, did you make a little note of your conversation with Mr Chapman, which we see at page 7?
A Yes, I did.
Q Mrs H, is this your note or is it Mr Chapman’s note?
A This is my note made of the telephone conversation.
Q Your note says:
“He said the SC File must have been Dr Southall’s own file regarding his research undertaking and that he must have taken it with him to North Staffs.”
Just pausing there a moment, we see the reference to the words “SC”; when did you first learn that there were some words “SC” in relation to a file that may be held on your child?
A I think it was in the late 90s I became aware that SC files existed. I did not at that time think that we would have an SC file, and I did not know about the files really, and it was not until about 2000, when we were originally bringing the complaint to the GMC, which started in 1999 the process started, that I decided to see if we could get the SC file. We found out that we had a number. Sorry, yes, I found out in the GP’s records that there was a reference to an SC file in there and I found the SC file number was 2026, and on the back of that I started searching for the SC file.
Q Did you mention that number to Mr Chapman of the Royal Brompton in May 2000?
A I think it probably did, yes. Certainly the SC file, I am not sure about the number.
Q Then did you in July get a copy of what medical records held at the Brompton were, still in July 2000?
A Yes, I did. Not the complete set that had been there in 95, but I did get what was left.
Q Can you just look at page 8, please, for a moment, and is that a letter to you from
Mr Chapman, saying:
“Further to our brief conversation [in] July ….. I enclose a copy of the content of [Child H’s] medical records at Royal Brompton ….. and trust you will find them in order. As you will see from the top left corner, [Child H’s] records have a reference WinDIP 2.1. This is the software reference for our optical disk scanner to which his medical records have been transferred. The page numbers are not in numerical order. They have instead been put into the order that the Hospital follows in storing medical records of patients.”
That material that you got in 2000, was it as ample as the material you had got earlier when you had involved Messrs Hutton’s?
A I do not think right at this point I had got the content of what Hutton’s had.
Mr Chapman had told me that the records were not complete, but, as I say the file had been sent totally to Hutton’s, so we sort of slightly crossed over here really because I do not think when I got this letter I had actually got the Hutton’s stuff.
Q Did this material, that you were provided in July 2000, did it include the SC file?
A No, no, there was no mention of it.
Q Did you also ask your solicitors for copies of what they had obtained in 1995?
A Yes, I did. As I say, Mr John Chapman told me where to go, that we were entitled, so I contacted Tim Musgrave at Hutton’s solicitors and asked him for a copy of the records that they had had then, and he sent them to me.
Q Go to pages 9 and 10, we have now reached August 2000, and was this a letter from Tim Musgrave, who you have just mentioned, to you, enclosing, as we see in the fourth paragraph:
“You may recall that I applied to the Court for an Order requiring the Royal Brompton ….. NHS Trust ….. to disclose relevant documentation to us for the purposes of the case. I received 3 bundles of documents from the Trust including documents which related to Professor Southalls research. I enclose those [three] bundles with this letter. Please note that I have not kept copies.”
Were you in the next paragraph given a health warning as to the use you could put to those documents?
A I was told I could get seven years’ imprisonment if I showed them to anyone.
Q Pausing there for the moment, did those documents that you got from Mr Musgrave include the SC file?
A No.
Q So that is in August 2000. In 2001 did you write to North Staffs, making observations about Professor Southall and also ask for the whereabouts of the SC file? Let me take you to the next letter, which is at page 11.
A Yes, I did write to Ms Smith, yes. I had found out that Dr Southall held information on us at North Staffordshire Hospital. Are we going to move on to that, Mr Tyson?
Q Yes, we are.
A Okay.
Q Did you write to a lady called Ms Smith at the North Staffordshire Hospital on
March 1, 2001?
A Yes.
Q This is a letter which has got “11” at the bottom.
A I have jumped ahead, have I not?
Q Does it start:
“Further to our telephone conversation this afternoon, we are writing to you in order to express our concerns about the conduct of Dr ….. Southall. The history of our case is long and complex, but it is known to all those who will be receiving a copy of this letter.
As you know from your records we approached North Staffordshire hospital some while ago after being told by the Brompton ... that a separate file referred to in our sons medical records at the Brompton … was probably a file in relation to
Dr Southall’s … undertaking in relation to [our son] while he was working at the Brompton ... and that this file had disappeared, and the suggestion was made that
Dr Southall had taken it with him to North Staffs. Our question to your hospital was looked into and eventually we were told that North Staffs Hospital held no records in relation to [our son]. While we were prepared to accept that the hospital had no record of [Child H], we still believed that Dr Southall was holding the SC File/other documents somewhere. However we had no real evidence in relation to this matter and therefore we had to let it rest.”
In March of 1991, letter 13, did you get a letter from a Mrs Sidoli, dated 25 March 2001, to you, saying:
“With reference to your letter ... I confirm that following an extensive search the special case file number 2026 has been found.
We are able to provide you with it as it related to the Trust and it’s employees and therefore enclose the relevant documents. Legally, we cannot disclose information which emanates from any other agency and you should contact them separately.”
What did you feel when you got that letter, Mrs H?
A The reason I had written the original letter to Mr Smith was because we had got sight of the hospital records. I should say we now lived in South Wales, so we are not doctor shopping; it was a local hospital. We caught sight of those records, we were shown them and there were three letters in there relating to Dr Southall. There was a letter from --
Q I am sorry, I need to start again. On 26 March 2001, you having first asked through your solicitors for the medical records relating to this child in 1991 – so 10 years later – you get a letter saying the SC file 2026 has been found. I was asking you to tell the Panel what you felt when you discovered that a file had been found and that it had been found at North Staffordshire Hospital where your child was never a patient?
A I already knew that they had information at the Academic Department in Staffs because I found reference to it in the Singleton Hospital records, so it was not a surprise to actually be told it was there. It was just that it had taken so long to get it, so much hard work, so many letters and so many phone calls and it had not been forthcoming. We had been obstructed every which way in our search for it, and to actually get a letter saying, “We have got a little bit of it”, was better than nothing.
Q Did it contain very much in it, that which you had been given?
A No.
Q Did it appear to have things missing from it?
A Yes. We were hoping that when we got the SC file, we would also get the Great Ormond Street medical records that had disappeared in 1990. They did not appear with this file. However to my surprise – I cannot find the words for it really – there was a poem there that had been written by me for my husband and children in 1992 and Dr Southall had a copy of that poem in his SC file. I think you will probably find a copy in the SC file you have got.
Q I need not take you to it but I need now to move on in the correspondence slightly. Can I ask you to look at the letter at page 14 at the bottom of the bundle. Did you write to
Ms Smith?
A I did.
Q Following receipt of the documents from the file did you say to her on 31 March 2001:
“Re SC2026,
Dear Ms Smith, it appears that documents have been removed from this file by Dr Southall or withheld by yourselves or another third party…You told me during our recent telephone conversation that you have withheld documents in relation to Social Services that were contained in the file for legal reasons. We appreciate the fact that as you state in your letter, we can apply to the agency to get these, but it would have been very useful if you had told us where the agency is located – i.e. Kensington and Chelsea SS. We would appreciate it if you could let us have the information referred to in the previous paragraph ASAP. It would also be helpful if you could let us have a list of the documents that we should request, i.e. letter from Dr Southall to …dated… We trust that you will not come back to us to say that the documents that we feel should be in File SC2026 are not on your premises as you did when we originally requested you look for the SC file on the 23 March 2000.
We have spent the last 12 years trying to get to the bottom of this with the support of our family and friends, but never in all those years has our search for truth and justice for our son had any support from professionals who were in a position to help us”.
Then you make various comments about the difficulties that you have had in getting the information. You conclude,
“There are two more concerns that we would also like to express: We find the contents of File SC2026 to be rather strange and in our view it could be seen as some kind of Trophy/memento, especially as Dr Southall took this file with him from the Brompton to the North Staffs. The Brompton Hospital admit that they have no record of this file and could only suggest that it was a file in relation to Dr Southall’s research undertakings in relation to Child H while he was working there”.
Is that the letter that you wrote on 31 March 2001?
A Yes, it is.
Q Did you get a reply to this letter from Ms Smith on 3April 2000, saying:
“I write to regard to your request on 29.03.01 to review the file 2026 to determine which correspondence refers to a particular Social Services department. Unfortunately I am unable to do this and I have been advised to ask you to contact each Social Services department that you have had contact with to request any information specifically related to your family”.
A Yes, but it is difficult to make a request when you do not know where you are looking. I did contact Kensington & Chelsea and got a letter back saying we had already got them.
Q Do not worry about your contact with Kensington & Chelsea. Did you then get a letter in December 2001 from the new Chief Executive, Mr Eames, at the North Staffs Hospital effectively stating that he considered you to be happy with the action that you had had which related to the North Staffordshire Trust, and that he considered the matter closed. Did you consider the matter closed?
A Far from it, but due to personal reasons in 2001 I had got off the band wagon, if you like, for a while. I was expecting another child so I was letting this lie. Unfortunately I lost the baby and so there had been a lull in the storm, if you like, so far as me going to them, so
I guess that was why he thought I had gone away. I had not actually been sent the documents; I had been told to go looking from them and I had not been given any more of the SC file. I guess because I had gone quiet, as I say, he thought that was enough. He considered the matter closed; I most certainly did not. My search for the SC file was not over.
Q You had some material that you had been given by North Staffs but not all of it.
A No, nothing like all of it, no.
Q Did you pick up the cudgel again and speak to Mr Chapman of the Brompton in April 2002, and did you contact him to tell him anything?
A Yes. We had come to terms with the loss of our baby at that time and I contacted him again. As Mr Tyson says, I took up the cudgel again and I informed Mr Chapman that they had found the file at North Staffs.
Q Did he confirm anything to you about what the words “SC” stood for?
A Yes. I asked him about the description we had been given, which was that it was a social care file. He said that that was not the case. The SC file number did not exist on any medical records or social services records generated at the Brompton Hospital. They only related to documents from Dr Southall’s department that had been generated there so he believed that it was a research file that he had taken with him.
Q After that telephone conversation with him did you write to him the letter at page 18 in the bundle, the next page, I think, on 19 April and did you say this,
“Dear Mr Chapman, thank you for speaking to me on the telephone this morning. You know of course that the questions raised were in relation to the SC file that was referred to in Child H’s medical records at the Brompton Hospital.
You once again clearly stated that this was a file that was held by Dr Southall in the academic department and that it was a file containing Dr Southall’s research work undertaken in relation to Child H. You told me that the entire academic department was relocated to North Staffs when Dr Southall moved there and that is why the file cannot be located at the Brompton Hospital.
You were able to clarify that the SC File was not a social care file, my understanding of this is that any file of that nature would be held by Social Services.
I was able to tell you that the SC file was in fact located in the academic department at North Staffs hospital last year following an ‘extensive search’.
We were able to show that Dr Southall did hold a file on Child H at North Staffs”
A Yes.
Q Did he reply to that letter, which we see at page 19, Mrs H?
A Yes, he did.
Q Does that come from Mr Chapman,
“Thank you for your letter of 19 April 2002 which followed our conversation as a result of which you asked me to clarify a reference on certain papers in Child H’s medical records containing the reference ‘SC2026’, when his hospital number is C47636. I wrote in my letter of 16 May that I did not know what SC2026 referred to”.
The 16 May there referred to in this April letter, was that an earlier year than 2002?
A Yes, I presume it was.
MR TYSON: I do not know whether my learned friend is able to make any admission in this regard. I can prove from another document what the year is.
MR COONAN: If you show me I will consider it. (Document handed)
A It might have been the year before.
MR COONAN: It is 16 May 2000.
MR TYSON: Madam, we will come to this letter in due course when we hear from Mr Chapman. Can I ask you to insert, as a result of my learned friend’s agreement as ever on technical matters,
“I wrote in my letter of 16 May 2000”,
instead of 2002, that he did not know what SC2026 referred to. The letter to you goes on, Mrs H,
“As far as I have been able to establish in the past two years, the SC2026 reference appears to have been applied by the Department of Paediatrics (Clinical Physiology) of which Dr David Southall was head until July 1992. It appears only on reports by this department. I can see no other use of the reference in any other documents in Child H’s medical records. It does not feature in any of the social Services documents so I am certain it does not refer to ‘social care’.
Dr Southall was head of a unit within the Department of Paediatrics in the National Heart and Lung Institute (NHLI) (see his letter of 27 June 1991 in Child H’s medical records). The entire unit headed by Dr Southall relocated to North Staffordshire Hospital at Stoke-on-Trent when Dr Southall left in July 1992 to become Professor of Paediatrics. The NHLI Academic Department undertakes medical education and research into heart and lung disease in infants and children. My enquiries in the Academic Department of Paediatrics for further records of Child H’s treatment and care revealed nothing. I concluded that Dr Southall could have taken further records to North Staffordshire Hospital. Your letter informs me that your inquiries to North Staffordshire Hospital found that Professor Southall held a file about Child H there.
I trust this letter is helpful. I have, with your permission, sent a copy of it to Mary Timms, solicitor at Field Fisher Waterhouse”.
A Yes.
Q Moving on from there, Mrs H, did you make further attempts with North Staffs to try and get the balance of the SC file?
A I did, yes. I decided to go on another fishing trip to see in fact if the Great Ormond Street records, the original records, would come out, so I went back to them and I was contacted then by Kath Sidoli, North Staffs, to say they held no records on my son at all.
Q I think you said that North Staffs held no documents on your son at all. Is that what she told you?
A Yes.
MR COONAN: I cannot see what the witness is reading. I do not know whether it is a document of her own that she is reading from.
MR TYSON: Do you just have in front of you the file that we have been going through?
A Yes.
MR COONAN: The witness came into the witness box initially with a sheaf of documents.
A I put those documents on the floor.
MR TYSON: Were you told by this lady that North Staffs held nothing?
A Yes. I contacted Kath Sidoli and she told me that they held no records on my son at all at the North Staffordshire Hospital, and no SC file. I contacted her and said that they certainly had had a record, and she said she did not know where it was, she would try to find it.
Q Did you then write again to North Staffs, the letter at page 20, in June? Ms Sidoli is the lady in the North Staffs Hospital, is that right?
A She is the lady who sent me the documents the year before and had obviously forgotten that she had when I spoke to her.
Q You say,
“You will remember telephoning me on the 24th May, the conversation we had was ‘interesting’.
During that conversation it was agreed that you would write to me iin the next two weeks telling me where the file SC2026 had now been sent, you were not able to give me that information at the time of our conversation, as the purpose of your telephone call was to tell me that you held nothing in relation to [Child H] at North Staffs. Of course I was able to remind you of a letter that you sent to me last year that told me that you did hold a file in relation to [Child H].”
Just going back a moment, can we look at page 13? Is that the letter that you got from this lady a year earlier, saying that she had found it?
A That is the one, yes.
Q You were able to remind her that she had sent you this letter a year earlier, saying that she had it?
A Yes.
Q Picking up the letter at page 20 at the bottom of the second big paragraph:
“Of course I was able to remind you of a letter that you sent to me last year that told me that you did hold a file in relation to [Child H].
It was in fact because we had requested that you send us a copy of that file that you were ringing me.
When I reminded you about your previous letter, and we had cleared up a few other equally feeble excuses you told me that the file had been sent ‘somewhere’ earlier that week, but was unable to tell me where or to whom it had been sent. I would like to point out that we had requested a copy of that file some weeks earlier, so you had in fact sent it ‘away’ after we and the GMC solicitors had requested it.
We look forward to hearing from you in writing in the very near future.”
Did you get a reply back from Ms Sidoli which we see at page 21, dated 13 June 2002, saying:
“I am writing following our telephone conversation recently when you requested information held by the Trust on yourself and your family, in particular the file number 2026. As I explained at the time the Child Health Enquiry has been concluded.
Information belonging to the Brompton Hospital and Professor Southall has since been returned to them and is therefore no longer held by the Trust. Shortly after your enquiry I received a letter from Field Fisher Waterhouse, who appear to be acting on behalf of the General Medical Council and yourself and your husband, also requesting the file number 2026. Therefore to avoid any duplication I have asked the General Medical Council to communicate directly with Professor Southall’s solicitor’s on your behalf.”
Pausing there, Mrs H, it says:
“Information belonging to the Brompton Hospital … has been returned to them.”
Did you contact the Brompton Hospital after receipt of this letter and ask if any material had been returned to them?
A I spoke to Mr John Chapman. I have always found him very helpful, very honest, and I asked him if he had had anything from North Staffs because I had been told that they had sent stuff belonging to them back and they had received nothing.
Q To this day, Mrs H , do you consider that you have received a full copy of the SC file even though you have received more than you have received before?
A No, I am sure I have not. Dr Southall did seek recordings on our son. They have not been found. Well, they have not been given to me. I think, Ms Ellson saw tapes, but no, we have not had the complete file. I do not think we will ever get a complete file.
Q There is one other matter. I just want to ask you something completely different,
Mrs H, and that is about the state of health of Mr H. Is he able to come to give evidence?
A No.
Q What is wrong with him?
A My husband had an emergency quadruple heart bypass in 1998. Three of the bypasses have failed. He has chronic angina and the stress of coming here would be too much, and the stress of the video link would have been too much for him as well. He could not have handled it. He tells me with angina pain you cannot concentrate on anything else and so his doctor considered it, as he did, too stressful. I am not going to lose my husband to something like this. He is the father of my four children and his health is more important.
MR TYSON: Thank you very much.
Cross-examined by MR COONAN
Q Mrs H, is your husband here today?
A No.
Q Not in the public gallery?
A My husband is not well enough to be here.
Q He has not travelled up with you?
A No, I had to come on my own.
Q How long has he had this condition?
A The ---?
Q The condition you have just described?
A I am trying to think actually. He originally started having chest pain in 1997, and out of the blue. He was a keen mountain cyclist, etc. It was decided he should have an angiogram, which they followed the blood through the blood vessels and it was discovered he needed a quadruple heart bypass.
Q When did he have that?
A He was waiting for that and he had it in the end on May 1 1998.
Q How has his condition been after the bypass?
A He has continued to have problems, and as I say, now they have discovered that three of the heart bypasses have failed.
Q When did they discover that?
A Last year.
Q Last year. So we are absolutely right about the date, 2005?
A Yes, I am pretty sure he went to see his cardiologist last year.
Q Does he work?
A Yes, he works in the hospital in Morriston, Swansea.
Q Doing what?
A He is a medical technical officer, dental technician.
Q A five-day week?
A Yes.
Q What is the feeling as to the reason why he cannot come to give evidence?
A Because the stress would be too great for him and he has had a doctor’s letter stating that.
Q You were asked for your opinion. Leave aside doctor’s letters.
A I am not a doctor. I cannot have an opinion on that. It is between my husband and his doctor. It is nothing to do with me.
Q Mrs H, you were asked by Mr Tyson a number of questions about your husband’s health and I am now exploring them with you. Do you follow?
A My husband’s health?
Q You were, just a few minutes ago.
A Right, sorry. Yes.
Q Yes?
A Yes.
Q That is what you and I have just been talking about?
A Yes.
Q So what is it about his condition that prevents him from, first of all, travelling to London?
A It is not the travelling to London, it is the stress of coming here and he has not seen Dr Southall since the meeting in 1991. It would just be too stressful.
Q Is the stress do you think associated with answering questions which are put to him?
A You would have to ask him.
Q You have told us that it is about stress.
A My husband just says if he came he would have an angina attack because of the stress. I can only say what my husband has told me. It is his judgement call, him and his doctor. He has angina and I cannot answer questions about his health really. All I know is that he does not cope, he has angina attacks and he does not feel he could come and give evidence.
Q You mean he does not feel as though he can answer questions about your son’s treatment?
A It would be too stressful for him to come and give evidence at a GMC hearing. It is very stressful. At a GMC hearing, yes.
Q Because your husband is not afraid or reluctant to answer questions in interviews carried out with journalists, is he?
A He has given interviews, yes. It is totally different circumstances, but yes, he has given interviews.
Q You see, on October 9 this year, about four weeks before this case opened, you and your husband appeared in a television programme in Wales, did you not?
A Yes, we did. It had been taped a little while before.
Q Maybe a little while before, but certainly in 2006. Is that right?
A Yes.
Q Your husband was interviewed by the journalist in that programme, was he not?
A Yes.
Q He was interviewed on his own, on screen?
A Yes, on his own on the screen. We were there obviously.
Q You were filmed and interviewed with your husband, walking along with your son and yourself which, I can only take to be near Swansea, along the beach?
A Yes. It was not along the beach, but yes, it was near the beach.
Q Along the strand path alongside the beach?
A Yes.
Q Your husband gave every indication on that programme of being willing to answer questions put to him by a journalist, was he not?
A Yes.
Q But he will not come here to answer questions put on behalf of the Panel?
A He says it would be too stressful.
Q Mrs H, can we just go back, please, to the first letter in time, which is, for my purposes, relevant, and C1, tab 2A. This is the letter of 7 March from Dr Dinwiddie to Dr Southall. Before we look at the content of that letter can I just ask you a preliminary matter and I am using that as a reference point. Prior to March 1989 had Dr Weaver provided any treatment or care to your child?
A 1990 – sorry, I missed the …
Q Prior to March 1989?
A As I said, we had seen Dr Weaver once.
Q So, as of the date of this letter Dr Weaver – she is a she – was no longer involved actively in your son’s care?
A No.
MR SIMANOWITZ: I am afraid I have not got that letter. The only letter in A is dated 23 January 1998.
MR COONAN: This is C1, tab 2 A. Mrs H, can we just pause a moment? It is 7 March 1989. (After a pause) Just to recap, I hope accurately, by the time of this letter Dr Weaver was taking no active part in the care or treatment of your child?
A I do not think she was. We saw her once, as I say. I cannot remember exactly when it was, but certainly by 1990, when we saw Dr Southall, she was not.
Q In other words, to make it clear, Dr Weaver had not taken part in any care or treatment of your son between March 1989 and March 1990
A As I say, I am not sure of the date that we actually did see her, but we only saw her once.
Q When you did see her, did she suggest a nebuhaler should be used?
A She suggested that we use an inhaler for our son, which is when you breathe in through the mouth. Dr Dinwiddie described a nebuliser, which you breathe through the trachea. We could not understand how our son could use an inhaler, used to breathe through the mouth, when in actual fact he breathes through a tracheostomy. So the nebuliser seemed to be the most logical thing, the thing that Dr Dinwiddie, who was his clinician of record, as
I say, had prescribed.
Q It is a short question. When Dr Weaver suggested, as I suggest she did, using a nebuhaler, that you in effect rejected that advice?
A Dr Dinwiddie was his ---
Q Is it “yes” or “no”, and then we will move on to the specifics.
A He already had a nebuliser that Dr Dinwiddie prescribed for him, so an inhaler is just another form of that. So he was already having a nebuliser via Dr Dinwiddie.
Q You are saying there was no need for the advice that she gave; it was superfluous?
A You would not use both. Yes, I guess we were saying “no.” Yes, we were following Dr Dinwiddie’s treatment plan.
Q So you rejected Dr Weaver’s suggestion?
A Yes.
Q Now let us turn to look at this letter of 7 March 1989. There are a couple of features of this I want to ask you about. During the course of the evidence this morning you told the Panel that you saw this letter, not at the time of writing it, but at some stage. First of all, can
I ask you, please, when did you first see this letter?
A I think it was probably on the first admission in 1999 to the Brompton Hospital.
Q The circumstances in which you saw that letter were what?
A We were taking our son for, I do not know, maybe an ECG or something, I cannot remember, and I was just given his records to carry down to the department. They were just handed to me, so I had a look at them and I saw this letter.
Q That was round about the first admission in September 1989?
A Yes.
Q When you saw the letter you would have noted perhaps, if you read it carefully, the last paragraph:
“I would be very interested if you could see him and arrange the necessary further investigations and advise in any other treatment that you think might be helpful in this particular situation.”
A Yes. I say I saw the letter. Really what jumped out at me was the third paragraph.
I do not think I read the rest.
Q You did not read particularly the last paragraph?
A No, that third paragraph is what jumped out at me.
Q When you saw the third paragraph and you saw what appears to be Dr Dinwiddie’s handwriting on the question of Munchausen’s, can I ask you, did you subsequently ask Dr Dinwiddie what on earth he meant by that?
A No, I asked Dr Martin Samuels when we went back to the ward. He said that if they had ever thought it, it certainly was not the case now, and not to tell his boss that we had seen the letter.
Q That was in September 1989, was it?
A Yes, it was the first admission.
Q But you never asked Dr Dinwiddie what he, Dr Dinwiddie, meant by that?
A I cannot remember, to be honest. I probably did, but I cannot remember.
Q I am going to move really to the central part of this, which is the admission in March 1990, and for these purposes please will you look at the next volume, which is bundle C2 at tab (i)? You told us that you did not see Dr Southall during this admission, and I am not in a position to dispute that, but I do want to ask you, please, about what you remember in particular Dr Samuels saying to you, right?
A Yes.
Q First of all, it is fair, is it not, that these events occurred in March 1990?
A Yes.
Q It is over sixteen years ago, yes?
A Yes.
Q This letter, which of course you did not see at the time but you saw subsequently, sets out what in this case Dr Southall is saying was their – that is using the plural, is it not, “our suggestion”, and so forth, it is the sort of royal “we”, as it were, do you see?
A Yes.
Q Let us just look together, please, at a number of these factors. You, I think, have agreed, and I am looking at the last paragraph on the first page, you had agreed that
Dr Samuels did suggest that you use a transcutaneous PO2 monitor, so that is correct?
A Yes.
Q Did he say to you that they would therefore, in using it, be able to get used to his baseline values?
A No. What he said to us was simply they wanted to close his trachy, give him experimental drugs for his asthma, give him oxygen therapy. It was not really explained out like it is here in this letter. I do not know what baseline values – I mean, baseline values do not mean much to me, I do not know quite what that would mean.
Q Did you not ask Dr Samuels any questions about these matters that he was putting to you?
A I think we just said that it was not what Dr Dinwiddie had suggested, and we wanted to ask Dr Dinwiddie, but really we wanted to see Dr Southall for him to explain, and, as I say, he did not come and see us.
Q That may be, but did you not ask Dr Samuels any questions about this treatment plan that was being put to you?
A It was totally different to the one that Great Ormond Street was saying, so, I mean, we were totally confused.
Q All the more reason, you see, to ask questions, and I am just probing as to whether you did.
A We were going to ask Dr Southall, he was not available, and obviously we are going to consult the clinician of record, which is Dr Dinwiddie, and, you know, if he thought it was right, he could have explained it to us. We had two opposing views – well, not opposing views, but different treatment plans, and, I mean, we knew Great Ormond Street, we knew
Dr Dinwiddie, we had had five years worth of dealing with him, and he could have explained it if he had agreed with the treatment plan.
Q You see, quite apart from the elements in that paragraph, and then the other elements over the page, do you accept that Dr Samuels mentioned that H’s neurological state ought to be further investigated?
A No.
Q He did not say that?
A That was not mentioned.
Q It was suggested that your child’s overall care should be managed by a local paediatrician.
A No. As I say, it did not happen.
Q You see, I suggest that this is a long time ago, and I want to suggest to you it is precisely because of that that your memory is at fault.
A My memory is not at fault. He did not mention it. I think I can remember quite a lot of this even though it did happen sixteen years ago.
Q So the subject matter of care by a local paediatrician was never even mentioned?
A With Martin Samuels?
Q Yes.
A No.
Q Well, I am going to have to suggest to you, you see, that it was, and that the whole of those elements that we see in that bottom paragraph and the top paragraph on the second page were put to you, and that you and your husband agreed at that stage to the constituent elements.
A Which were that we would see a local paediatrician, is that what you are saying?
Q Well, the idea of it, and you accepted at that stage.
A We accepted, as I say, the use of the monitor. All really that came up in that was the treatment plan and the difference between their treatment plan and the treatment plan of Great Ormond Street, you know. I do not think we really went anywhere else with it.
Q Following the proposal, and I suggest the agreement, you were trained by Sister Noyce in the use of the monitor, were you not, before H was discharged?
A Yes.
Q You went home, tried out the monitor, and you had a telephone conversation with
Dr Dinwiddie.
A Yes. I think we went home, we tried the monitor the first night, and obviously the next day I was going to consult Dr Dinwiddie, so that is exactly what I did.
Q Absolutely. I just want to understand really the thrust of your evidence here. Are you saying that in effect when you phoned Dr Dinwiddie he told you not to follow the Brompton plan?
A Dr Dinwiddie told us it was not what he had expected, and to continue with his treatment plan, and to return Dr Southall’s monitor to him, yes.
Q Again, I am sorry to press you, and allowing for the fact it is sixteen years ago, are you saying that Dr Dinwiddie was giving you the impression that you should stop the Brompton plan?
A Dr Dinwiddie told us to continue with his treatment plan, which was different to the Brompton Hospital treatment plan, so I guess you can interpret it in that way. I mean,
Dr Dinwiddie was my son’s doctor, we were going to follow his treatment plan.
Q It is not my interpretation that is important. What is important is your interpretation.
A We were following the treatment plan of Great Ormond Street, yes.
Q I know that you did, but it is important that I explore this. Are you saying to this Panel that at the time your strong impression was at the very least that Dr Dinwiddie was saying, “Do not follow the Brompton plan”?
A Dr Dinwiddie told us to follow his treatment plan.
Q Right.
THE CHAIRMAN: Mr Coonan, I would be looking for some convenient point to break for lunch. Mrs H has been on the witness stand---
MR COONAN: Now would be as good a time as any, madam.
THE CHAIRMAN: In that case we will take a lunch break until two o'clock now. I need to remind you again, Mrs H, not to discuss your evidence in the case with anyone, and I take this opportunity also, if there are any members of the press here, to remind them that the family in this case is being anonymised and should not be reported. So we will be back at two.
(Luncheon adjournment)
MR COONAN: Mrs H, I am not going to detain you very long. I was asking you some questions arising out of the letter of 27 March 1990. Just with that as a backdrop, could I just make it clear to you, so the Panel understand as well, that I am not suggesting to you that you were asked for or gave consent to this particular letter being sent, do you understand? Nor am I suggesting to you that you were asked for or gave consent to any letter being sent.
I have dealt with all I need to in relation to that letter, and I want to move on just very briefly to the telephone call you had now with Dr Southall a few days later. We have dealt with the phone call you had with Dr Dinwiddie, and we are now in the phone call with Dr Southall. You told the Panel earlier this morning, shortly before lunch, that you had seen, although perhaps not taken in, the final paragraph of Dr Dinwiddie’s referral letter.
A Yes.
Q Have a look at it again if you wish. It is in the previous volume, C1 1(a). You have told us it was during the admission in September that you managed to have a look at this because it was in the clinical notes which were accompanying your son elsewhere at the hospital. Again, I am not suggesting otherwise, but you may not have taken in the final paragraph, as you said, and did that remain the position by the time that he was admitted in March 1990; in other words, you had not fully appreciated that Professor Southall was being asked to advise about treatment?
A No, we did not appreciate that at all.
Q When you spoke to Dr Southall, can you just remember exactly what it was that you said to him?
A As I say, I thanked him very much for his time, I appreciated it, and I said I had sought Dr Dinwiddie’s advice and he had told us to follow his treatment plan and to return the monitor to Professor Southall – Dr Southall, sorry.
Q You told Dr Southall that. Again, I cannot put to you the exact words because it is so long ago, sixteen years ago, but did you have a short conversation?
A With Dr Southall?
Q Yes.
A Yes, very brief.
Q At the end of that brief conversation, then the phone was put down?
A Yes.
Q Simple as that.
A Well, I would have said it was slammed down, but certainly it---
Q It is terribly subjective, is it not, slamming the phone down or---
A Well, he said, “Send my monitor back then”, and the phone went down. There was no “Goodbye” or “Thank you for your call”, or anything like that.
Q Of course, you do not know what he was doing at the other end.
A No, I do not, that is true.
Q Also, can I just suggest this to you, and these are firm instructions, that Dr Southall left it with you that you were to come back if you changed your mind.
A No. He said, “Send it back to me then”, and put the phone down.
Q Because if you go back---
A I know that is what he says in his letter of the 24th.
Q In the letter, you see, that is exactly what it says.
A No, that was not – I mean, I could see when we left the Brompton Hospital to go and discuss with Dr Dinwiddie, I would presume then if Dr Dinwiddie had said, “Yes, go back to Dr Southall”, then I presume it would follow that he was there, ready and willing to implement his plan, but that is not how it went. We rang Dr Dinwiddie, but there was no mention of that particular paragraph to me. I suppose we just assumed that the one would follow the other really.
Q Mrs H, I do not want to, as it were, make a big thing of this, but the fact is that, what, a matter of three or four days after this phone call---
A It was the same day.
Q You are saying this letter was the same day as the phone call?
A I think it was, yes.
Q What day of the week did you make the phone call?
A Well, he says it is the same day, does he not, in the letter? He says that – I am pretty sure he does---
Q Well, he does. I am just wondering what your recollection was as opposed to what you can reconstruct from the letter, you see. Do you have a recollection that it was the same day, 22 March, that you phoned him?
A Well, I mean, I would not have known at the time that he had written this letter on the same day obviously, but I have seen this letter in the past, so the fact that he wrote this letter the same day as I made the phone call---
Q At any rate, let us assume it is the same day, the same day as the phone call,
Dr Southall is writing, and we look at it four lines from the bottom:
“I have left it with the parents that should they change their mind we are here and willing to implement the approach outlined above”.
That is the case, is it not? That is how you left it?
A No. We left it in the hospital, as I say, it was not with Dr Southall, it was Martin Samuels, that we would go home with the monitor, I would contact Dr Dinwiddie and see if that was okay, the new treatment plan in essence was okay with him. As I say, he said to follow his treatment plan. I cannot say anymore than that really. If Dr Dinwiddie had said to go back, we would have gone back.
Q Can I just, again leaving the phone call to one side, this phone call sixteen years ago, and move about nine years later. Did you instruct somebody called Penny Mellor to be your advocate?
A For the Griffith inquiry, do you mean, or---
Q Well, at any time.
A I heard of Penny Mellor. I thought she was part of the Griffith inquiry, so yes, I did.
Q That was the way to answer it, either a “Yes” or a “No”. So the Griffiths inquiry, since you have raised it, was an inquiry in effect set up by the Trust to investigate certain aspects of Dr Southall’s clinical management, and we will hear about this later.
A We were not part of that inquiry, but yes.
Q But you instructed her, in about, I suggest – at the latest – 1999.
A I think it was around 1999, yes, but “instruct” is the wrong word. We were in Wales. She was in North Staffs. She was giving evidence. I did not know who Penny Mellor was at that time. She was giving evidence. In fact I thought she was part of the Griffith inquiry, so
I gave her stuff, yes.
Q Did you give her documents?
A I think I gave her some to pass on to the Griffith Inquiry.
Q Yes, you did.
A Right. But we were not part of that inquiry, were we?
Q Two wholly separate matters. They concern documentation. During the course of your evidence this morning you were being asked about a document in C2, which is letter (g). Could you turn that up, please? This morning you said to the Panel that you had not seen this document before. I just want to explore that with you and I suggest that you are wrong about that. You must have seen it before because it is part of the main record.
A What main records?
Q The documents which were supplied to you, a long time ago, consisted at least of documents of which this was one.
A Sorry, documents supplied from where?
Q At any stage before today you had seen this before, you must have.
A I may have done but I cannot recall it.
Q I shall comment on this later and I give you an opportunity of answering. You now say you may have done but you cannot recall it. This morning you were positive you had never seen it.
A If you are saying I have, then maybe you are right, but I do not remember.
Q Finally, again a matter of documentation. Before I ask you to look at this document can I ask you a couple of preliminary questions to set the scene? During the 1990s, and in particular round about 1994, you were trying to get hold of the Great Ormond Street notes, were you not?
A The solicitor did, yes.
Q The solicitor acting on your behalf.
A Yes.
Q Solicitors at that time acting for Great Ormond Street were who?
A Field Fisher Waterhouse.
Q The same solicitors you have now.
A Yes. Sorry, you said acting for Great Ormond Street.
Q Yes. Do you remember – if you cannot I will jog your memory by putting a document in front of you – at that stage understanding that the Great Ormond Street Hospital records were in existence?
A No. They were missing up to a certain point which was 1990. After that they did have them.
Q After when?
A After the period of 1990. When my son went into hospital in February 1990 for the ventilator assessment, they went missing around that time or just after. They had the notes that followed on from that period of time so they had 1991 records.
Q Have you seen those?
A A couple of pages.
Q That is all?
A That is all.
Q I am going to ask you to look at this letter, please. Can it be distributed? (Same handed)
A I say a couple of pages. I cannot remember. I certainly have not seen any records prior to 1990.
THE CHAIRMAN: Would this be D2?
MR COONAN: Yes, madam. Thank you. Mrs H, you see it is a letter addressed to Mid-Glamorgan County Council in relation to you as the subject of it. I am looking at the middle paragraph,
“From speaking to some of the other solicitors involved in this case”.
Pausing there, was that a reference to potential litigation involving a number of parties being brought by you?
A A number of parties?
Q A number of potential defendants to legal action being brought by you?
A It was Great Ormond Street Dr Dinwiddie, I think, and Professor Southall from the Brompton. The solicitors were looking for those records yes.
Q So from your standpoint it was with the possibility of bringing legal action against Great Ormond Street and Dr Dinwiddie, and the Brompton and Professor Southall.
A It was a fishing expedition, yes. But yes, if you like. We instructed solicitors.
Q Whatever it was, their names were going to appear as defendants on a writ, to put it bluntly.
A Yes.
Q The middle paragraph says,
“From speaking to some of the other solicitors involved in this case, it is our intention to grant voluntary disclosure of Great Ormond Street Hospital records but to exclude documents which have been sent to the Hospital purely for information purposes. We would therefore indicate to Messrs Huttons, solicitors for the H family, that it would be necessary for them to contact either yourselves or the Social Services Department if they wish to obtain copies of such documents as the case conferences”.
Again, this is all about Great Ormond Street principally.
A Yes.
Q I want to ask you, as far as you know did you ever get those documents that Field Fisher Waterhouse appeared to have possession of?
A Which documents, sorry?
Q The ones being referred to here.
A If you are talking about records from Great Ormond Street, we have got a letter in our possession which states that Great Ormond Street did not have any records prior to 1990-91. I guess they got some records, as I say, after March 1990, but nothing before then. In terms of social service department letters, we had those anyway. We were given those by social services.
Q I just want to be clear about this. Do you think you have received everything that Field Fisher Waterhouse had, or apparently had, in 1994, or do you not know?
A that Field Fisher Waterhouse had? They are not our solicitors.
Q Acting on behalf of the hospital, do you follow? You see the letter says, Mrs H,
“It is our intention to grant voluntary disclosure of Great Ormond Street hospital records”.
Do you see that? They were acting for Great Ormond Street.
A Yes. Field Fisher Waterhouse were going to get the records, but that is not my solicitors so why would I see them?
Q Because they would then be disclosed to Huttons, your solicitors.
A Our solicitors at the time did not have any records prior to 1990. I have it in writing that they did not exist. Whether Field Fisher Waterhouse had them, I do not know.
Q Is the position this, that you do not at the moment know whether such documents as Field Fisher Waterhouse had were fully disclosed to Huttons, your solicitors? You do not know?
A We had to sign consent forms – I mean, I am not in control of that, am I? That is between solicitors. If Field Fisher Waterhouse withheld from Huttons, I do not know. All
I know is that we had a letter which was sent to Huttons, our solicitors, saying – I think that is right. Field Fisher Waterhouse wrote to them saying there were no documents to be found prior to 1990 in relation to Great Ormond Street.
MR COONAN: Thank you, Mrs H.
Re-examined by MR TYSON
MR TYSON: Presumably you could give that letter to your present solicitors once you get home, could you?
A You should have it somewhere, but yes. I certainly gave it to the General Medical Council. I have certainly given it to the General Medical Council to prove that there were no medical records in relation to Great Ormond Street prior to 1990.
Q You were asked, and it was suggested to you that you had agreed to a local paediatrician from the Royal Gwent Hospital becoming involved in your child’s care. Did you ever agree to that?
A Absolutely not. The Royal Gwent did not come into the conversation. If anyone it would have been a local paediatrician somewhere else, but it was not discussed.
Q You were asked about the Griffith Inquiry. Were you involved in that in any way, or were you not involved in any way because of where your child was treated?
A In March I wrote to David Fillingham in 2000 and I actually referred to the Griffith Inquiry and asked him if we were part of it. That was one of the reasons I wrote. We found that we were not part of it because anything that happened to our son in relation to us took place at the Brompton Hospital London so we did not form any part of any inquiry.
Q Did you understand that the Griffith Inquiry related to Professor Southall’s dealings whilst he was at North Staffordshire?
A We did afterwards. When I asked David Fillingham, I was later told we were not part of that inquiry, categorically told we were not part of that inquiry and that they could not look at any of the issues we had raised. As a supplement to the Griffith Inquiry the MSCHN put in a separate report which did include some of our documents, but I have never seen that report. I do not know what it said.
Q Did you understand that Miss Mellor was part of the inquiry team?
A That was my understanding at the time, yes.
MR TYSON: I have no further questions of this witness. I do not know whether the Panel have questions.
Questioned by THE PANEL
MRS LLOYD: Good afternoon, Mrs H. Mrs H, there are just one or two questions I would like to ask you for clarification. I understand it is your evidence that you tried the TCP02 monitor for one night with your son, and you stated it was not successful.
A Yes.
Q Why did you not try it for longer?
A It alarmed all night long. We checked our son, obviously and he was perfectly all right. It just was not going to work. It was designed for a younger baby. As I say, he was four and it just was not suitable really. As I say, I contacted Dr Dinwiddie and he advised us to send the monitor back. If he had said to me, “Carry on, persevere, try and use it”, I would have done. But he did not give me that indication at all.
Q Coming on to that conversation that you had with Dr Dinwiddie, you said that he suggested that you return it and you then contacted Dr Southall. In your earlier evidence, which you have already been cross-examined on, you said that Dr Southall slammed the phone down on you.
A If you are on the end of the phone you are left with an impression, are you not, and my impression was that he slammed the phone down on me, yes.
Q I am just wondering how you can get an impression if you are not actually in the same room.
A It was more that there was an abrupt end to the conversation. He did not say, like
I said “Thank you for your time”, etc., or “Thank you for your phone call”, something like that, which is how I would end a conversation; he did not say that.
Q When you were cross-examined by Mr Coonan, you later stated that he put the phone down. What I need to establish is whether he put the phone down or whether he slammed it down, because you were not in the same room. How can you state that he slammed the phone down?
A The phone went dead very rapidly. If I was slamming the phone down, that is how
I would slam it down, I suppose. The line would go very abruptly dead. There was no, “goodbye”. No, “Thank you for your phone call”. The line just went dead, or back to dialling tone.
Q The other thing I wanted to clarify with you was that you have used the term “trachy” several times in your evidence. Could you just advise the Panel as to whether this is a term you devised or whether it is a medical term?
A It probably is a term that is used within medical circles, if you like. It is probably just a shortened term. My son still has a patent tracheostomy and so it has just become, over
16 years, part of life, I suppose. I think it came out of the ENT ward in Great Ormond Street originally. It was shortened to “trachy”.
MR McFARLANE: Good afternoon, Mrs H. I can confirm that I do use the term “trachy” when referring to a tracheostomy. If we are looking at the time when you went to the Royal Brompton Hospital in September 1989, and afterwards, how many times did you see Dr Dinwiddie after that particular admission to the Royal Brompton Hospital?
A After 1989?
Q After September 1989.
A Our son was a patient of Dr Dinwiddie. We saw him fairly regular.
Q When you say regular, how many times a year?
A At least once every three months I would have said.
Q For how many years?
A After that point? We saw him up until May 1991. The last time we saw Dr Dinwiddie was in May 1991.
Q So just under two years, so you would have seen him six or seven times.
A The last time we saw him was when he told us that Dr Southall had intervened in his treatment plan and he was calling a case conference. That was the last time, apart from in the case conference on 10 July 1991, that we saw Dr Dinwiddie. As a result of the out of court hearing in November 1991, both Dr Southall and Dr Dinwiddie were ordered out of our case and told to have no more involvement, so we were actually under Dr Weaver from that point. She was my son’s paediatrician then, our son’s paediatrician from that point on. But Dr Dinwiddie had continued to treat my son. We continued to follow his treatment plan. He was still pursuing a ventilator. By this time we were using a Nellcor pulse oximeter at home and providing the recordings for Dr Dinwiddie, and based on that he was in negotiations with a firm called EMI to develop a trigger system ventilator, and that was still ongoing when Dr Southall intervened in the treatment plan. His intervention brought that all to an end, which is perfectly all right if our son did not need one. But our son has got medical problems which, since Dr Southall’s intervention, have been totally ignored and in fact could have cost him his life.Southall6d2mr – 2.30 p.m. – answer continued
And that snowball had started rolling and once it started rolling you could not stop it and it would keep gathering snow, and we had to go with the flow and that resulted in us losing our son for a year and all the trauma that brought with it.
Q If I can refer you to the referral letter that Dr Dinwiddie wrote to Dr Southall in March 1989, which is in ---
A It is all right, I remember it.
Q You remember that, yes. You said to us that when you read the little portion in manuscript which reads:
“The question of Munchausen by proxy has also been raised”,
you found that to be quite surprising. Did you ever discuss this sentence with Dr Dinwiddie?
A I may have done, but certainly Dr Dinwiddie never gave us any indication at all that he thought anything along these lines. I may have said to him, “Where did this come from?” If I did, then it was not an issue, obviously, because he continued to follow the treatment plan, we continued to follow him.
Q What you are saying is that you saw this, even though – certainly I got the impression that you were very upset when you read this in September 1989, inadvertently, but you were prepared to overlook it?
A When I got back to the ward I asked Martin Samuels. I pointed it out to him, Dr Southall’s – I do not know what he was. He worked with him. I asked him what it was about and he said, “Oh, if ever anybody had ever thought that, it certainly was not the case now”, and not to tell Dr Southall that we had seen it. I probably did – I do not know if
I mentioned it to Dinwiddie. I presume I did, but it was not an issue between us.
Q So what you are saying is you were reassured by Dr Samuels’ explanation?
A Stupidly, yes.
Q And you did not wish to take it further?
A That is right.
DR MCFARLANE: Thank you very much indeed.
THE CHAIRMAN: Mr Simanowitz is a lay member.
MR SIMANOWITZ: Good afternoon. I really would like to follow up that line of questioning because I am a bit intrigued. At that time to read a note like that in a letter from a doctor whom you trusted and to see for the first time that this is what he is saying, how is it that you did not phone him up, rush off to see him, say, “How can you say a thing like that?”?
A I may have done. I really cannot remember, but if I did or we did talk about it we were reassured by Dr Dinwiddie. If he thought that, you would expect Dr Dinwiddie to have taken some action or to inform social services or whatever, and that did not happen.
Q But he did think that because he wrote it in the letter.
A I do not know, I do not have your answers, but if he wrote that in a letter in 1989 why was it that nothing happened until 1991? Nobody made any approaches. In 1990 Dr Weaver and Dr Southall approached our local Mid-Glamorgan Social Services, unbeknown to us. There was a meeting held; it was found that our son was in a loving, caring home, he was in normal school and there were no concerns. Following that meeting my GP came and told me that they had had a meeting and I wrote to – that is right, yes, I did, because I contacted Dr Dinwiddie then and told him this meeting had taken place and he said he did not know about it. Time moved on, the decision had been made, our son was in a loving, caring home, and Dr Dinwiddie continued to treat him and then in 1991 of course we found that Dr Southall had intervened in the treatment plan and he had invoked Kensington & Chelsea social services, who had nothing to do with us, knew nothing about us.
Q Forgive me, I think you have answered the question.
A Thank you.
Q In the same pattern, almost a year later something else quite striking and serious happens because Dr Dinwiddie’s plan of action is changed completely, the suggestions made, and you were given a monitor which you decide to have a go, but everything is quite different from what Dr Dinwiddie was doing. Again, why did you not phone him up and say ---?
A This was 1990 and we were given the monitor in 1990.
Q Yes.
A Sorry, I think the question you asked a minute ago related to 1991, or have I got lost? I am sorry.
Q What I am trying to get at is that in 1989 something happened which you could easily have contacted Dr Dinwiddie about, but you did not, and then in 1990, a year later, again something happens. Forgive me, I would have thought that something ---
A The case conference?
Q The change when you went to Brompton and you were told they were going to change the plan of treatment, they were going to close the trachy and it was completely against what Dr Dinwiddie had told you. Why did you not immediately contact Dr Dinwiddie?
A I did.
Q You phoned him up, did you?
A Yes, that is the conversation we were talking about a little while ago. I phoned him up and he told me to return the monitor to him – sorry, to return the monitor to Dr Southall.
Q So you had a detailed conversation with him and told him all the instructions that had been given?
A Yes, I told him that they wanted to take [Child H’s] trachy out, they wanted blah, blah, blah, and that is when Dr Dinwiddie told me to return the monitor. That was in 1990, yes. Then following that, in the June, when I returned the monitor, as I say Dr Southall and Dr Weaver then contacted Mid-Glamorgan social services and tried to get our son taken off us, it now transpires. That did not work. I found out about it – sorry, just let me, before
I forget – I found out about that meeting and I asked Dr Dinwiddie about that and he said he did not know, so I got social services then to write to Dr Dinwiddie telling him, the clinician of record, that the meeting had taken place, and that was the first he knew of it.
Q I was not asking you about the meeting at all.
A Right.
Q I have one more question. Can I ask you to look at C2, tab (j), the second letter, the letter dated 18 March signed by Dr Dinwiddie, in which he says, “To whom it may concern.” How did that letter come about to be written?
A We had just moved fairly recently to a new area, 1988/1989. It was decided between Dr Dinwiddie and ourselves that he would remain [Child H’s] clinician of record, but as we were moving to a new area, in case we had problems with [Child H], caring for his tracheostomy or some kind of emergency, we would have to go to a local hospital obviously to get help. He wrote this letter so that we could give this to any doctor that we might come across in an emergency unit.
Q Did you ask for it or was it his suggestion?
A It was a mutual – yes, it was a mutual thing because [Child H] was not being referred to a hospital, it was just an introduction to show his background history, really, so they would know, and of course then they could contact him and he would fill them in on the whole picture.
Q So it was merely by way of an introduction?
A It was an introduction, yes.
Q The last sentence, when Dr Dinwiddie says he will certainly benefit from an ultrasonic nebuliser; did you ask him to put that in?
A That was in relation to the Corrie Weaver – I am sorry, I am getting tired – the Corrie Weaver appointment, when she suggested the inhaler and we had gone to Dr Dinwiddie and asked him about the inhaler and he said, “Well, you know, he’s got a nebuliser. How would an inhaler work?” and that is what that was really about, to say he needs a nebuliser. He did not say that an inhaler will not work, but that is what that was in reference to really.
Q This letter was written after you had moved to Wales and seen Dr Corrie Weaver?
A Yes, I would say it was, but … No, sorry, the ultrasonic nebuliser was a piece of equipment that children with trachys sometimes used to moisten the airway at night and that is what this was. It was a specialist piece of equipment that would have needed purchasing and we had to buy it, so that is what this was about. It was about the purchasing and the need for that nebuliser.
Q Did you ask for that to be put in so that you would get this?
A No, he is just putting in that [Child H] would benefit from an ultrasonic nebuliser.
I do not know why he put it in.
MR SIMANOWITZ: Thank you very much.
THE WITNESS: Sorry, I cannot really answer you on that one.
THE CHAIRMAN: Dr Sarkar is a medical member of the Panel.
DR SARKAR: Good afternoon, Mrs H. I have a number of questions, you may not be pleased to hear, and I will take you exclusively to a folder which we have been given as C7.
I hope that is in order. (After a pause) C7, as you will probably have noticed, is a copy of the SC file held on Child H. I now want to take you to page 13, which is at the beginning. It is a discharge summary by the ENT department of Great Ormond Street Hospital. The last but one paragraph reads:
“The patient was then referred to Dr Milla, Consultant Gastroenterologist. He requested that video recordings were made of the child swallowing when fed both by mother and fed by the nurses. The patient’s parents did not agree to this further investigation and he was discharged home.”
May I ask you for clarification why you did not agree to this?
A It was following the operation that he had had for the Nissen’s fundoplication, etc., and when he was feeding he seemed to be going like this. (The witness demonstrated) We could not work out why and they suggested that they wanted to video him. We said, again, can we see how it goes, and we went home and we actually realised the reason he was going like that was because he was teething and his back teeth were coming through and it was hurting him, obviously as he chewed, and that was the end of that. When the tooth came through, the problem went.
Q But when the video recording was suggested it says, if we are to believe Dr Robert Quiney, that the gastroenterologist had requested a video recording but you did not agree to that.
A It was Dr Milla who suggested it. We had a very brief meeting with – well, he just came to see our son. I do not know why he suggested the videoing really. If they said, “You’ve got to be videoed” we would have been videoed, but they did not say we had to be and we just wanted to see if it was just passing thing, and obviously it was, because our son was teething.
Q The next question is relating to that document again. Towards the very bottom you will see a circulation list and it says, in the penultimate line, “cc General Surgeon.”
A Yes. That would have been the person who did the surgery on [Child H]. He was a general surgeon within GOS. You would expect I think a doctor to send a letter within the hospital when you were sharing the care of the child. To my mind that is very different from sending a letter to somewhere else. This I would not class as a breach of confidentiality because all the doctors had been sharing the care of the child, particularly at that time. There were a couple of teams involved.
Q I wanted to just make two points. Number one, nobody actually had asked for your consent for the copy of the discharge letter to go to the general surgeon?
A No, but as I am saying, this is about him anyway because I think, if I can just have a look ---
Q 1988.
A It is following that operation. He is the guy who had carried out the surgery, or at least his registrars or someone, so I would have expected a letter to go to him.
Q The second point I want to make, and I want to see if you agree with me or not, that you will see that he was only called “General Surgeon”, there was no name mentioned. It could have been anybody in the big hospital, although you probably correctly identified who it was who attended. But with the internal post system of the hospital it would have been floating around, possibly?
A Possibly, but I imagine they meet in corridors and maybe they pass the letter … I do not know. It depends on the relationship that people have between them working together,
I suppose. They were working together, that is the point. They were a team, they were all members of that team, so you would expect them to share information, just as we expected Dr Southall to share information with Dr Dinwiddie, as Dr Dinwiddie was his doctor.
Q Can I take you now to another discharge summary and this is dictated and signed – well, not quite signed – by Dr Jane Ratcliffe, registrar to Dr Dinwiddie. That appears on page 16.
A (After a pause) Yes.
Q In the middle of the last paragraph it says:
“Dr C. Weaver, Consultant Paediatrician at the University Hospital in Cardiff has agreed to look after him locally.”
A Yes, it does.
Q This is in October 1988, after the relatively brief admission of seven days?
A Yes. As I said, we just moved. That is right, at this point we had literally just moved from Stevenage in Hertfordshire to Cardiff. We had met Dr Weaver in church, as I said to you. She was introduced. We said we would go and see her, but that was as far as it went. We had not said, “Oh yes, you’re now the paediatrician” because Dr Dinwiddie was, at Great Ormond Street, so I do not know if there was contact between Dr Ratcliffe and Dr Weaver.
I do not know. They must have had contact between them but it was not something we were aware of.
Q I wanted to make it clear for the Panel that this referral to Dr Corrina Weaver which Dr Ratcliffe talks about, who is working as a junior to Dr Dinwiddie, you were not aware of this referral being made?
A No. Sorry, can you just repeat the last bit again? We were not aware ---?
Q You were not aware that Dr Jane Ratcliffe, working under Dr Dinwiddie, had indeed referred Child H to Dr Corinna Weaver?
A No, we had no idea. As I said, we just met her in church. She said she would see him if we wanted her to. We thought we better be polite and say yes. In fact, if we wanted a local paediatrician involved we would have asked for Dr Peter Gray, who was a brilliant paediatrician and was a member of the same church. So I am sure if I wanted a local paediatrician I could have gone and there would have been ways to have got him to be consultant, but we did not need one locally.
Q How many times has Child H been seen by Dr Weaver in total?
A In total? He saw her once prior to 1991 when he was taken off us. As I say, in November 1991, in the out-of-court hearing, Dr Southall and Dr Dinwiddie were ordered out and Dr Weaver became the paediatrician then who cared for him. So, she saw him while he was away. I presume she saw him while he was away from home. He was away from us for a year. It was decided in the out-of-court hearing that our son should come home. He came home in … Our son was in hospital for four months and they took him off us in July of 1991. They kept him in hospital until mid-November of 1991, so I guess during that whole time she would have been there, she was the person in charge, if you like. He had been removed from our care, and then when he came back to our care she was the paediatrician until we moved to Swansea in 1993, when her involvement finished.
Q So she has actually seen Child H on a number of occasions – at least more than once?
A As I say, our son was in hospital for four months, so she would have seen him regularly during that time, and her involvement with us ended when the care order – was it when the care order came to an end – the care order came to an end and the supervision order ran out, and we never saw her again. That was in 1993, in about May of 93. The last time we saw Dr Weaver - our son still has a patent tracheostomy, as I say, which was not closed, although it was claimed that it was – and she decided that he still needed the tracheostomy, he was still using it, and he has to this day still got a tracheostomy. In fact, in the whole of that time he has never seen an ENT surgeon. He has really gone ignored for the last sixteen years. We now find out that in 91, when away from our care, he was diagnosed with epilepsy, which nobody chose to tell us---
Q Can I restrict you to the particular letter.
A Sorry.
Q No, it is perfectly all right. I now want to take you to page 64 of that bundle. It is a letter from Cartwrights Solicitors to Dr Southall, and the letter is dated 19 June 1991. In the third line from the top it says:
“…[you] have asked Dr Dinwiddie who is the clinician of record to attend and give full particulars of the case.”
A Sorry, I have lost it.
Q I will read the full paragraph:
“We act for the parents of the above [which is Child H] who learned with alarm that you have summoned a meeting at your hospital on 27th June to discuss their sons case and have asked Dr Dinwiddie who is the clinician of record to attend and give full particulars of the case.”
A Right. Yes, sorry.
Q So it goes on to say that at least you knew that Dr Dinwiddie was being invited to this meeting, because the lawyers must have learnt from you?
A Yes. We went to see Dr Dinwiddie in May 1991, as I say. We saw him in the playroom on 5B, the ward 5B, and it was during that out-patients appointment that he told us that Dr Southall had intervened in his treatment plan and he had called a case conference and he would have to attend, and he hoped that he would be able to go there and convince him that, you know, he was wrong basically, but we still did not know what it was all about. We did not know that we had been accused of Munchausen syndrome by proxy. So
Dr Dinwiddie had told us about the meeting, yes.
Q You said that by that time you had read the letter that Dr Dinwiddie had written, and the words “Munchausen by proxy”, although handwritten, did not escape your attention, but you did not take this opportunity to ask him, but here is a case conference being called for Munchausen by proxy, you thought about a year ago that that might be the case, “What is going on?”
A Yes. I suppose, as I say, we had asked Martin Samuels about it, then Dr Dinwiddie carried on with his treatment plan, we were following his treatment plan, and what we were told was that this was about the ventilator – no, Dr Southall wanted my son to undergo particular tests, he wanted him to undergo this test, and Dr Dinwiddie had apparently told
Dr Southall (this is hearsay, obviously, but this is what he told us), that he told Dr Southall that if he wanted to have his tests, he would have to write to us and ask us himself. Obviously, Dr Southall had not written to us to ask, and so he said that Dr Southall had intervened in his treatment plan in order to get the tests.
Q Okay.
MR TYSON: I hesitate to interrupt the questioning, but we are going slightly off the heads of charge, with respect.
THE CHAIRMAN: Dr Sarkar, have you got the clarification that you were seeking?
DR SARKAR: Well, the paperwork that has been submitted to the Panel, if they are no longer relevant I think it would help us if the paperwork was removed, because otherwise it confuses at least me to know what is relevant and what is not. If that is the case indeed, madam, I would request the GMC’s barrister to take a short break and remove the paperwork so that at least I am not confused.
A I have to say that this forms part of the bigger picture, in fact, it is the whole picture, but the GMC have not taken forward these aspects, so I cannot tell you, although I have sworn to tell you the whole truth and nothing but the truth, I cannot actually tell you the whole truth because it is not part of these proceedings, it is not in the remit of the GMC hearing.
THE CHAIRMAN: That is the point. I think probably Dr Sarkar is taking the view that material that has been put in front of us, even if you have not referred to it, may raise questions in the Panel’s mind if we have not been specifically told not to read it, so perhaps you could just clarify the position on that.
MR TYSON: Yes. I had to show you the whole of the SC file just to show you what the SC file was and had in it, but not to study it in detail. The heads of charge relate to original clinical documents that are in this file but nowhere else. That is what the heads of charge are, as we see from Appendix One how many originals there are in the SC file, that it would have been unfair of me not to have put before the Panel what the whole of the SC file is. I mean,
I do not want to stop any Panel questioning, provided it is just a question of relevance. The heads of charge relate to documents in the SC file that should not be in there, rather than documents that are in the SC file and perhaps have good reason to be in there.
A And actually would tell the whole story, but---
MR TYSON: It was just with that in mind I just sought to remind the Panel what the issues are that they have to deal with under the heads of charge, but I do not want to stop any Panel member asking questions.
THE CHAIRMAN: Dr Sarkar, does that give you reassurance?
DR SARKAR: It does give me reassurance, but the way I was viewing it is that if the information is in front of me and in relation to a case in front of us, unless Madam Chairman or the Legal Assessor tells me otherwise, I would need to establish the broader picture because it has relevance in my mind now, you may overrule me on that, but I was trying to understand Mrs H’s involvement with the various professionals in regards to her son’s treatment.
THE CHAIRMAN: Perhaps it would help if I asked the Legal Assessor to comment on this.
MR TYSON: Perhaps before the Legal Assessor does, I mean, there is enormous documentation in this case, and I could for instance produce this child’s records from the Brompton, or other hospitals, not Great Ormond Street for the reasons the witness has given. We have sought to reduce the documentation to a minimum, but, having said that, it was felt appropriate and still is appropriate that the Panel should be able to see the whole of the SC file, albeit not the whole of the others, in order to see what the gravamen of the charge is relating to Appendix One. If Dr Sarkar or anyone else wants to explore the professional relationship between this mother of a patient and other clinicians, then there are other files not before the Panel that could give a different picture that one got just by looking at the SC file; for instance, for what it is worth, I have seen voluminous correspondence, not voluminous but correspondence, with doctors dealing with the various technical people asking about trigger ventilators, and the like. If the object of this Panellist’s questions,
Dr Sarkar’s questions, is to seek to establish the relationship between this witness and clinicians involved in the child’s care, then the picture from the SC file is not going to assist in establishing those relationships. I remind the Panel that the two issues relating to this witness and the heads of charge are, firstly, whether or not it is appropriate to send the letter of March to an unnamed paediatrician, and, secondly, whether it is appropriate to have original medical records in an SC file. Those are the two issues relating to this patient. I am reminded of course there is a third issue, which is under 13©, which is an issue of why does the SC file relating to this child end up in the North Staffordshire Hospital when this child was only treated at the Brompton? Those are the three issues relating to this child, and none of those issues, though I will be corrected by the Legal Assessor or any guidance from the Panel, relate to, in my submission, the line of questioning that Dr Sarkar was embarking upon.
THE LEGAL ASSESSOR: Madam, Mr Tyson has encapsulated in his remarks the issues that are before the Panel in regard to this patient and the evidence that has been given before you. Of course, it is not at all unusual for quantities of information and documentation to be put before Panels when conducting their inquiries, but what is essential is that lines of questioning should be restricted to the issues which are germane to the decision which they have to make. Now, much matter will appear by way of background or periphery in the documentation here, as is quite often the situation in other cases, but the essential matter is to concentrate upon the specific issues which are before the Panel. Now, the line of questioning which Dr Sarkar is pursuing, you may think, is not specifically relevant to the issues which are before you. Of course, it is open to the Panel to ask questions which concern them, but it is important that they should have well in mind that they should concentrate on the issues themselves rather than on peripheral matters which may not be in any way germane to the issues.
My advice, madam, is that Dr Sarkar’s questions, which may well perfectly properly concern him, on the face of it do not seem to be specifically relevant to the issues, and in those circumstances my advice is that this is not a line of questions which would really be helpful to the Panel in regard to the issues which they have to determine.
THE CHAIRMAN: Dr Sarkar, you have heard that advice, and I hope perhaps it helps reassure you in the sense of the reason as to why we have the volume of material before us, that in making diligent enquiry we do not necessarily have to delve into the details of every document that is placed before us, and indeed, as I understand Mr Tyson is pointing out, that if we were to do so might even be unjust, because we then do not have other information that is pertinent to the same topics.
MR COONAN: Madam, could I just rise. I appreciate you in effect repeating the advice that the learned Legal Assessor has given. Might I suggest that in effect strangers withdraw while you have this discussion in private, because there may be other opinions to be expressed by members of the Panel on the document, I know not.
MR TYSON: Including us?
MR COONAN: Including us, yes, that we ought to withdraw whilst the Panel discuss it.
THE CHAIRMAN: I will ask Dr Sarkar if he would prefer to discuss this in private or whether he is now satisfied with the answers he has received so far?
DR SARKAR: Madam Chairman, I am very satisfied by the advice the learned Legal Assessor has given and I have no further questions.
THE CHAIRMAN: I think that matter is resolved then. Thank you. If there are no further questions from the Panel, I myself do not have any questions, are there any questions from either counsel arising from the Panel’s questions?
MR COONAN: No, thank you.
Further re-examined by MR TYSON
Q You were asked about your contact with Dr Weaver, and I think I noted down that you only had seen her once before you went to the Brompton Hospital, is that right?
A I am sorry, can you repeat that?
Q Had you only seen Dr Weaver once before you went to the Brompton?
A Yes.
MR TYSON: I have no further questions for this witness.
THE CHAIRMAN: Mrs H, thank you for coming. That now completes your evidence. You are released from oath and you may stand down.
(The witness withdrew)
MR TYSON: Madam, my next witness is going to be Ms D, for which we will need Panel bundle C2 at section 4. I know not whether, and I suspect not, you have just before section 5 a section (k). I do not think you have, but I would like you to insert a section (k). (Documents handed) Madam, the issue that this mother of a patient goes to, there are matters relating to this child in the SC files, which you will see in Appendix One relating to Child D. You may recall Professor David taking us through incoming and outgoing correspondence and the like. There are issues relating to this child in Appendix Two relating to material found in the Academic Department computer. There is one particular incident of fact you need to determine, which is dealt with at Appendix Three, which was the manner of a conversation that this witness who I am going to call had with Professor Southall on 15 December 1994. So those are the three matters, the three issues in the heads that this witness goes to. Again, I am grateful to my learned friend who indicated that I can lead this witness up to her child’s entry to the North Staffs Hospital. I call Ms D. Can I ask you to indicate, madam, what time you were going to rise for a break this afternoon?
THE CHAIRMAN: Well, I am content to fit in with what would be a convenient time.
I think we should take a break, and one looks for some point in the middle of the afternoon. Do you feel it would be better to take a break now before this witness?
MR TYSON: I am happy to call this witness. It was just if you gave a rough indication as to when you would want me to metaphorically draw stumps.
THE CHAIRMAN: In about twenty minutes perhaps.
MR TYSON: I will look to see how we are doing at about half-past.
Mrs D, Sworn
Examined by MR TYSON
(Following introductions by the Chairman)
Q Mrs D, there should be a piece of paper on the desk in front of you. Could you please write down your full name and address on there? (Witness wrote accordingly and same handed) Mrs D, I see that you have got three files in front of you. You will only need to be bothered, when I am asking questions, with File C2, at Section 4. Perhaps we could quickly go through the earlier matters in this section. Can I ask you to look at the letter under Tab (a), please, which is a letter dated 24 April 1989 from Dr Rodgers? Was he your GP?
A He was.
Q To the Paediatric dietician at your local hospital. It relates to your child who would appear to be about five or six months old when this letter was written.
A That is right.
Q It says,
“Thank you for seeing this baby who would appear to be one of the most allergic children I have come across. His mother is a nurse (RGN) who also has multiple allergies and is coping really very well with young D’s problems”.
Just pausing there for a moment, it says that you are a nurse. What kind of nurse were you for part of your career?
A I was a registered general nurse and I also did my paediatric training at Great Ormond Street to RSCN.
Q This is a letter at (a) asking for advice. Turning over to Tab (b), in July 1989, when your child was then about eight months old, did your GP refer him to the local paediatric consultant, Dr Connell, and again he was described as one of the most allergic specimens. Was the issue then that there had been a reaction to your child’s first triple and polio?
A Yes, that is right.
Q He asked him to look into the matter. At © there was a response to that from
Dr Connell dated 9 August 1989, saying,
“Thank you very much for referring this nine month boy with rather complicated multiple allergies, the main symptoms of these are episodes of apparent abdominal pain with colic and screaming, swelling of the eyes and urticarial skin rashes with eczema. In addition, as you say, a severe febrile reaction to his first DPT immunisation”.
Did that letter go over the page in the second main paragraph saying words to the effect,
“I would agree with you that the history leaves little room for doubt about the allergic nature of the problems. I think in practice his parents have done extremely well and it struck me that they have an extremely well balanced and sensible approach to his diet”.
A That is how things were.
Q Later that year in 1989 did Dr Connell refer your child to the Department of Immunology at Great Ormond Street?
A He did.
Q Just to pick up the first paragraph,
“I would be very grateful if you could give your opinion on this child who suffers from multiple allergies. The main clinical manifestations of these are recurrent urticaria and eczema, recurrent abdominal pain, swelling of the eyes and also a rather severe reaction to his immunisations”.
A That is correct.
Q Does it deal with the matter of immunisations at the bottom of the first page,
“His other problem has been one of reaction to immunisations”.
The main bit dealt with reactions and eczema,
“His other problem has been one of reaction to immunisations. His first DPT and polio was complicated by fever and screaming for a week. We therefore admitted him to the ward for his second immunisation at the age of 9 months. Despite this being covered with Piriton he had quite a severe generalised urticarial skin reaction with extreme irritability. He received intravenous hydrocortisone. He was never shocked. His skin rashes took about two weeks to settle down. He was also initially quite hypothermic following the immunisation, but then went on to make a good recovery. He is not a child who is particularly prone to infections and hasn’t had any features of immunodeficiency as such, but I think he does genuinely have a lot of problems with multiple food allergy. His mother has an extremely sensible and balanced approach to the problem and copes with him very well. I would be very grateful for your advice in general and also specifically to know whether you feel he needs investigation for any underlying immunological disorder. Secondly, for any particular advice you might have about his dietary management”.
A That is also correct.
Q Did Dr Connell get a reply at (e) from a Dr Strobel, who was then a senior lecturer and consultant paediatric immunologist?
A Yes.
Q The reason for not getting a reply from the professor he had first written to we can see from the first paragraph:
“Thank you very much for your letter addressed to Professor Soothill, which he has forwarded to me because after his retirement he does not see any new referrals.
Child D’s history is quite fascinating and I do not think there is any doubt that most of his problems have been food related possibly from an allergic background. The mother seems to cope very well with managing his diet. The next step obviously would be to reintroduce food items which had been excluded in order not to unduly restrict his diet”.
A That is correct.
Q Does he then go on to deal with the question of immunisation, and in the next paragraph the question of his urticaria? In the next paragraph does it go on to say,
With your permission I have sent the parents a direct appointment”.
Did your child subsequently see Dr Strobel on a number of occasions between 1989 and 1994?
A He did.
Q Were various food challenges carried out and the like relating to various aspects of your child’s allergies?
A There were only a few geo-food challenges carried out because Professor Strobel wanted to go the slow route. Because he could see my son’s reactions and how he was at the time, and because he was thriving on the diet that he had, he did go very slowly.
Q Did there come a time in 1994 – we have moved on five years – when you became concerned about your child’s sleeping at night?
A After the second immunisation, as the record shows, my son became quite hypothermic.
Q Pausing there, there are a number of lay people in this room, what do you mean by “hypothermic”?
A He would be quite cold and his temperature would drop. After he had his third immunisation in hospital in 1993, when he had another severe reaction worse than the second immunisation, these episodes became much worse. I therefore became even more increasingly concerned about my son’s problems at night time. He had been in a room on his own, but by then, because I was so concerned, I had him in a bed beside my bed because
I wanted to make sure that he was OK at night time. I then spoke to somebody from the Study for Infant Death Society to see whether a monitor would be possible to let me know when my son was having any difficulties at night time, so that he could go back into his own room and also to make sure that he was kept safe.
Q Did you discuss these concerns with your general practitioner?
A I did.
Q As a result of that did he refer you on to anybody?
A He referred me on to Professor Southall, because I was able to give the name of Professor Southall to my GP.
Q How had you got that name?
A From the Study for Infant Death Society. They recommended Professor Southall as being able to help with the monitor.
Q Could you look please, under Tab (f), which should be a letter of 6 October 1994? We see that is a letter from Dr Rodgers, who was still your general practitioner, is that right?
A He was.
Q He wrote here to Professor Southall at the Paediatrics Department, City General Hospital, Stoke,
“Dear Professor, re child D: I would be grateful if you could see the above child who is the most allergic patient I have ever known. His mother is an SRN and copes very well. There are relationship problems in that his father has alcohol problem. He attends Dr Strobel at Great Ormond Street. His mother is very worried about him at night as he gets frequent episodes of becoming pale, shut-down and query hypothermic. Would he be suitable for a PO meter”.
A That is correct. The “query hypothermic”, in Great Ormond Street on a few admissions it was recorded that my son’s temperature did drop down to about 33.5.
Q What do you understand by the words, “P O metre”?
A Proof of oxygen.
Q As a result of that letter, did you go and see Professor Southall for the first time in November 1994?
A We did.
MR TYSON: Madam, that might be a convenient moment.
THE CHAIRMAN: Thank you, Mr Tyson. We will break now for 20 minutes. Mrs D,
I have to tell you that while you are giving evidence and are on oath, during the break you must not discuss the case or your evidence with anyone.
(The Panel adjourned for a short time)
Q Mrs D, we have just been looking at a letter of October 1994, where your GP, at your behest, had referred your son to see Professor Southall about a monitor?
A Yes.
Q In November 1994 did you, your partner and your child go up to Stoke on Trent and see Professor Southall?
A We did.
Q Was there some minor logistical difficulty in actually finding his department because it is located in a rather bizarre part of the hospital?
A We went to the main part of the hospital and asked where Professor Southall’s clinic was and we were directed outside of the building. I can remember how far it was because we had heavy bags and it took quite a long time to get to this other department.
Q Then in this department was there a discussion about Child D?
A At this department I think there was just either a receptionist and a nurse and Professor Southall and I explained to Professor Southall my concerns for my son at night-time and I also explained about his allergy problems.
Q Can you look please at (g) and can you go to the third page in, which might on the bottom right-hand side have the page number 601 on it?
A Yes.
Q This is a note that was taken apparently at the time of this consultation and I just want to go through it quickly with you to see if these are the kind of things that were discussed.
A They were. Some is incorrect that I can see already.
Q Let us just go through it. It give his weight and height there. This is on 29 November 1994, I think it is. It says that the history of present complaint is low body temperature and multiple allergies. The first injection led to a too high temperature and he was unwell for a week afterwards. The second injection was delayed until two years ago and there was no pertussis, so he did not have the whooping cough.
A He did not.
Q Then it says:
“Face swelled.
Temperature dropped]
Flushing but T [temperature] still low.
IV Hydrocortisone given.
Went into ‘shock’.
LOC [loss of consciousness]
Blue lips
Unrousable.”
Then the note is recorded about the third injection, which was in hospital. Which hospital was that, Mrs D?
A In Wexham Park Hospital, Slough.
Q It says:
“Same thing happened.
LOC [loss of consciousness]
Blue – ↓ resps
Irreg. resps.
Similar happened whilst he was at home.”
There is slight difficulty with the left-hand side of the photocopying here, but it appears that there was discussion of things happening at home over the last three years, usually when he is asleep he gets very pale, irregular breathing, stops breathing for seven seconds, temperature goes down to 34.2 axilla, and rectal ( I think that is) 35.8.
“Space blanket no help.
Next day – very pale.”
Then he has been on adrenaline and steroids at home and there is a list of medication. Then under the history he is given, I think that may be – it is difficult to see – anaphylactic shock to egg, milk, apricot, strawberry, wheat. It is recorded that there is a very restricted diet and then it is recorded that the child has had eczema and is better since taking oral Becotide. It gives a family social history about your and your partner and indicates that the asthma is under control at the moment and there are some initials which I do not know the significance of. I am told it is “Short of breath on exercise”, and I am grateful. Exercise leads to a swollen face and flushed. It says that oral Becotide was dropped to one cap a day because of growth problems. Then it deals with allergy reaction to animals and that he had been under Dr Stroble at Great Ormond Street and he is not worried about these drops in temperature.
“Mum + GP concerned.
Under a dietician at hospital.
Skin very sensitive to many things. Under dermatologist …”.
Where was the dermatologist?
A That was Dr Atherton at Great Ormond Street.
Q Then:
“Fits related to high temps. Last one 2 yrs ago.”
Just pausing there on this note, are these the kind of things that were discussed?
A They are, but they are not quite correct.
Q Is there anything in particular that you want to draw the Panel’s attention to?
A The second injection was delayed but that could have been not having the correct time, but he did not go into shock with the second injection, he just had a generalised severe reaction and his temperature dropped. He did not have full shock for the second injection. The third injection he did go into an anaphylactic-type shock and it was a much more severe reaction. The problems that he was having at home were not as severe as that. He did have the odd allergic reaction if he maybe picked up something, which is how we knew he had a severe reaction to apricot. In the supermarket he just picked up an apricot, bit into it, then he had severe problems, but generally at night-time it was the paleness, very, very cold, and irregular breathing.
Q Then it is recorded that he was seen by Professor Southall:
“Cushingoid.
Urticarial + eczematous rash …
Mum concerned that recording may not show anything because of lack of allergies in hospital”,
and it was indicated that the child should be admitted in about ten days’ time for continuous temperature recordings, skin, axilla and oxygen recording. Is that more or less how it went on the first out-patient’s appointment that you had with Professor Southall in November 1994?
A This is basically what was discussed, but when it says about Dr Stroble not worried about these drops, he was worried because there is a letter in Great Ormond Street records to say, after his third immunisation, that these drops in temperature and reactions are a constant source of maternal and medical worry, but he was not worried enough to refer [Child D] because he did not know what was happening to my son at the time. He was worried about these reactions but he did not understand what was happening, which is why I did ask for a referral to Professor Southall to have some help because none of the doctors could explain what was happening to my son. Dr Atherton actually said it was as if he was hibernating. He could not understand what was happening either, but they did see my son like this in hospital.
Q How did Professor Southall come across to you at that first out-patient appointment?
A From what I remember nothing untoward. He seemed professional. I spoke about how my son was. He did not really ask many questions. He examined [Child D] and other than him not really asking any questions the meeting seemed to go okay and I got the impression that he was able to help my son.
Q Were you there for help with the allergies or were you there for help in getting a monitor?
A I did not ask Professor Southall questions about allergies because he was not an allergist. I was there really for some help to find out why my son had these problems at night-time and for some help in alerting to us when he had a problem. I do not know who could help explain why my son had these reactions but I did not go there for Professor Southall to see my son as a clinical doctor under his allergy problems.
Q I think you told us before tea about the purpose of you being there, because you wanted him out of your bedroom and you were worried about his breathing difficulties at night. Is that right?
A Not that I wanted him out of my bedroom, but I felt that at that time he was five, six, he should be in a room of his own, but because he had had these problems at night-time I was too scared to let him go back into his own room. But he was never in the bed with me, it was in a cot by the side of my bed, so that I could be aware and alert to when he was having these problems.
Q Was it agreed that you would come back in about a fortnight’s time and your child would be admitted for monitoring?
A Yes. Professor Southall said that we would hear from them re the date of coming back in.
Q Was he admitted on about 12 December and was in hospital for about three nights?
A That is correct.
Q If we go over the page that we have been looking at to page 606 we can see again on that , over the next page and over the next page, 608, the notes taken by the clerking doctor who admitted him. Indeed, it goes over the next page as well, 606, 607, 608, 603 and 604, where it says, two-thirds of the way down, “Admit for recordings”?
A Sorry, which page is that?
Q At page 604. It is not quite in chronological order.
A I have found it now.
Q It starts at page 606, goes to page 607, goes to 608, then to 603 and then to 604?
A Yes.
Q All those are the notes taken by the doctor who admitted the child in December and if you are asked about those matters doubtless you can answer questions about that note, but I am not going to take you to the note yet unless there is anything particular you want to raise about it.
A I actually do not remember seeing the doctor and giving an account but that could be because of the time lapse, I do not know, but on the first page, 607, the doctor states that my son needed adrenalin “x 6.” He had only ever had adrenaline at one time at that time, and he had had prednisolone x 6, but never adrenaline. He also calls my son “Stephen.”
Q Then we see that under that signature there is something that says “13/12/94”, and
I think that is the next day, a note for the 13 December 1994.
MR COONAN: I just wonder if you have the exact dates? I know they are cut off.
R TYSON: From a note that I have made it is 13/12/94 at the bottom of page 604. It says “Review.” It indicated that a tape had been saved and the matter had been discussed with
Dr Samuels and you were to stay for further ONR, and I think that is “overnight recordings.” It is recorded that there was a need to contact Dr Stroble and Dr Connell for copies of summary letters and lists of investigations and results. Then, over the page, at page 609, it is recorded that there had been a discussion with Professor Stroble of Great Ormond Street about the highly complex history and the child being a highly allergic child and various other matters there recorded, including, at the end of that, that Professor Stroble has seen an acute urticarial reaction. Then on the next day, 14/12/94, there is a review:
“When TCPCO2 attached last night ↓ … 19
- Sats - 98% - well in himself …
This morning dipped down to 17 …”,
but oxygen saturations normal,
“[Child D] well.”
Can you help us? Do you know when it is talking about down to 19 or down to 17, what those relate to?
A All I know is that it is the oxygen, but I do not really know the levels, but I do know at one time they were 50 and the alarms were going, so I assume that that was outside the normal limits because of the alarms going off.
Q Then it is recorded at the bottom of that that there is going to be a discussion with Professor Southall re further plans. On the 15th, which I think is the last day you were there, it is recorded here that there was a ward round, I think that is, with Professor Southall, and you recall seeing Professor Southall on the last day that your child was at the hospital.
A We did.
Q It is recorded in relation to that that:
“Mum worried about [temperature].
Mum has taken ….. rectal [temperature] – 35.6
When she tries to take it he moves around
Lowest axillary [temperature] 34.2
- he is ice cold
- no colour.
Mum is concerned because he does this when he is about to have an anaphylactic reaction.
He has delayed anaphylactic reactions
- mum is worried.”
Just pausing there, is that what you told the Professor, that he had delayed anaphylactic reactions?
A I did say at one time that I felt my son did have delayed allergic reactions, but none of this was discussed on that ward round, so the doctor that is writing this, whether this was before I came up to see them on the ward round, whether they were discussing this when
I was not there, but this is not a completely accurate account.
Q Was a discussion of the things we have said so far, are these concerns that you had raised?
A Yes, but I was concerned about the one delayed reaction that he had had which was observed at [hospital named] when he had his third immunisation, and that obviously had worried me that he could possibly have other delayed reactions at other times, because I just did not know what was happening to him at night time.
Q It is said that he had needed prednisolone 30 mg five times in six months. Is that what you had said?
A I may have said that. It could have been the five times, six times in that time because he did have an episode where he was reacting quite badly and he was obviously very overloaded, so I could have made that comment, but it was not adrenalin, it was prednisolone.
Q “…because of difficulty breathing, swelling ….. vomiting”.
A That is correct. At that time he was running around, hitting into things, and he was also having problems at school at that time.
Q “He has nocturnal hypothermic events [about] 3 [times a] week – feels very cold – pale”.
A That is correct.
Q He has “Angioneurotic oedema can occur every day” or “evening” – I am not going to say what that word is:
“other problems during day
– starts shaking
– pale
– cold.
Only needed [intramuscular] adrenaline [once] – when given” – is that “when given rice”?
A I cannot read that, but at that time he was only given adrenalin once, and that was by the casualty officer. I think that could be “milk”.
Q “If he was at home at the time, mum wouldn’t worry
He’s only been dropping [temperature] since he started school [and increased] frequency of angioneurotic oedema.
Mum [and] child sleep in same room.
Mum can’t sleep.
Has had blind challenges to wheat 2 [months] ago.
- reacted [very] badly
- serious [reaction].”
Listen carefully to the question: are those the kind of things that you told doctors at the hospital?
A I did tell the doctor at the hospital that I had taken my son’s temperature once rectally, because I had been told to do so by Professor Strobel when he became very, very cold, because they needed to know what his core temperature was, and that was on only one occasion that I ever took his temperature rectally.
Q That note that I have attempted to read out on 15 November---
A Basically they are the things that had been discussed in the past, yes.
Q What I want to take you now to is your memories of any discussion you had on
15 December with Professor Southall, and in your own words take us to how any discussion that you had with Professor Southall went that day.
A Is it possible to say that there is an omission on the 15th of the 12th prior to the ward round? The evening of the 14th was when my son became quite ill and a doctor was called to see him, because he was cold, clammy, his temperature had gone down to 33.5, and the TcPO2 had gone down to 9. When this doctor came to see my son, she went to make a telephone call, came back and spoke to the nurses. Nothing was done to my son. It was when I received records, it states that she had made a telephone call and no treatment was to be given, observe only. That is in the nurses’ records, but that is omitted from the doctor’s records, and those nursing records are also missing from the medical records.
Q Perhaps while you are making that comment, can you just go to the next tab, which is (h), where we have the nursing notes, and could you go to page 620 and see at the bottom of the page where it says:
“Very settled night. Saturated well throughout. However during early part of the night TcPO2 [to] 9, temperature via monitor 33.5-35.5 throughout, although when taken via axilla approximately 1° higher. Seen by Registrar last night when [taking temperature] and very ‘clammy’ to touch, nil ordered, to observe only. Mum resident.”
Is that the note you were referring to?
A That is the account, but the records that I have been looking at at home, that my solicitor for the civil case - those two pages are missing from those records, that is why
I thought that they were not in the medical records, but there is no account of that in the doctor’s records.
Q You told us that an incident happened, which we have just seen, on the evening of the 14th which is not in the medical notes but is in the nursing notes. Then I was asking you about on the next day to tell the Panel in your own words of when you told us that you saw Professor Southall at some time, how that went and what kind of things were said?
A I had been waiting with my son and ex-partner, which I believe was the play centre on the ward. It was coming to about early afternoon and we still had not seen anybody, and because we came from a long distance I was getting quite concerned because we needed to know what was happening because of travelling home. I then saw Professor Southall and a number of doctors and a couple of nurses on what I believed to be a ward round. I believe that it could have been in the corridor that they were walking in. As we were in this other room I thought that I needed to go out to speak to them otherwise they might miss us, and
I wanted to sort of, you know, know what was going to happen to my son, whether we could go home that day. So I went out to talk to the doctors. My son and my ex-partner were there at the time, but apparently when I went up to talk to Professor Southall a nurse came to him and asked him to go off and have a cup of coffee.
Q Sorry, asked who to?
A My ex-partner, but I was only aware of that at a later date.
Q So you went to talk to Professor Southall in this group?
A Yes, but initially my ex-partner and my son were there as well.
Q Then what happened?
A I might not get this all in the correct order because it did happen quite a long time ago.
Q Can you take it slowly because a note will have to be taken of this.
A I believe that Professor Southall stated that everything was normal. I questioned this, especially with my son having the reaction that he had had the night before, and I questioned Professor Southall that how could it be normal with alarms going off, and what was happening to my son. Professor Southall became quite angry and said that there is no such thing as delayed reactions, and---
Q He said?
A “There is no such thing as delayed reactions”.
Q Yes.
A The way he spoke to me, I just felt very, very sick in my stomach, and I just felt that he was stopping me from asking any more questions by the tone and the anger in his voice. At the time I did not understand why he was so angry with me, but in hindsight I believe it was because I was asking questions, and Professor Southall later went on to accuse me of exaggerating my son’s problems, and I believe that he did not want me to raise questions that things were not okay the night before, or indeed the three nights of the recordings.
Q Was there any other discussion about any other clinician to be involved with the child?
A Professor Southall said that he would refer him to Professor Warner, and he said that he was an allergist, and I got the impression that he was a world renowned allergist, and I felt from that that maybe he could help my son, because I then realised that Professor Southall was saying that everything was normal, and I then realised he would not be able to help my son, so I said, “Yes”, I would accept a referral to Professor Warner, but I was not given the real reasons why he was referring my son to Professor Warner, and implications. He did turn round and say that he would be contacting Professor Warner and if I had not heard from Professor Warner myself within two weeks, that I must ring Professor Warner myself, which I did do.
Q You told the Panel that he became angry and you felt sick because of the tone and anger in his voice. At what part of this conversation did he become angry, and what were the words that you thought were particularly anger making words?
A When he said everything was normal, that was a calm voice, and I believe, and, as
I said, I may have got things not in the correct order, but I believe now that, looking back and getting my head round that day, that I believe it was when I questioned Professor Southall that he became very angry and said there was no such thing as delayed reaction. It was the anger that I just could not understand at the time.
Q When he said, “There is no such thing as delayed reaction”, how was his voice in terms of volume?
A It was quite loud, louder than he had been speaking, but it was more the anger I think.
Q Were you given the opportunity to ask questions?
A I felt so sick, and also with Professor Southall sort of like raising and turning away,
I was too frightened to ask any more questions, or to raise the issue of how my son had been those three nights.
Q You say he turned away. Did he turn away in the course of this conversation?
A Yes, I believe he did, because I think that was a sign, that, no, you know, I cannot ask him any more questions.
Q Did he make any gestures at all that you can recall?
A I believe that he just put his hand up and he said that there is no such thing as delayed reaction, it was as if, like, dismissive of me,
Q You are showing, for the sake of the transcript, a raising of the right hand.
A That is what I remember. As this all happened so long ago there are some things that you do forget, but there are also things that are imprinted in my memory and you do not forget. If I can give another example, at the case conference in the room, prior to discussions---
Q No, I do not think I need to take you to the case conference.
A But there are things that – it was just Professor Southall laughing with another doctor, and that will stay in my head, the same as he was on that occasion.
Q We are talking about an incident now nearly twelve years ago. What are the aspects of this conversation that are really imprinted in your memory?
A Because of the sickness that I felt at the time.
Q What are the aspects about what he said or did that is imprinted in your memory?
A Because he had said that everything was normal and it clearly was not, and that made me feel, well, how can my son be helped if the doctor was denying what was seen in his own hospital and that other doctors had seen as well. I was worried for the safety of my son, because I had gone there thinking that Professor Southall would be able to help, which is the impression that he gave.
Q Is the phrase you told the Panel of “There is no such thing as delayed reaction”, is that imprinted in your memory?
A That is, because of the way it was said and the anger at the time.
Q Is his raised voice imprinted in your memory?
A Yes, it is.
Q Is his raised hand and walking away imprinted in your memory?
A The raised hand, it could be that he just turned away, I could not be certain that he walked or he just moved one step, but it was a turning as he waved his hand, and that is in my memory.
Q You say that you had gone to Professor Southall to see about whether your child could have a monitor. Was there any discussion, or did you have any opportunity to discuss whether your child could have a monitor?
A I just got the impression, because he had said everything was normal – I was not given the opportunity to ask him questions, but I just accepted that he obviously was not going to suggest a monitor, but because he had suggested Professor Warner I felt that there was some hope and some light because maybe Professor Warner could help.
Q When we mentioned Professor Warner earlier, you indicated that there was a question as to the real reasons why Professor Warner was going to get involved. What did you consider to be the real reasons why?
A It was not until two years later that I realised the real reasons and it was because –
MR COONAN: I am sorry, we are dealing with the events of 15 December.
MR TYSON: I will not take that any further. There came a time, which the Panel has heard about, when Professor Warner saw your child on a great number of occasions.
A That is correct.
Q Down in Southampton.
A Yes.
Q There is a document which the Panel has seen from Professor Warner, which is in the Panel bundle under Appendix one, dated 22 December. Could you look please at another bundle, C6? Let us look at page 25. By 1997 had you had a diagnosis from Professor Warner of what was wrong with your child?
A There was a diagnosis by Professor Warner at the end of July 1997.
Q Was the diagnosis that he had extensive and severe allergies; asthma, eczema; episodes of acute angio oedema urticaria and anaphylaxis?
A That is correct.
Q Turning to page 30 – that letter is 2(h) in Appendix One under this patient – at 1(i) in Appendix one. Do we now see a letter from Professor Warner to Professor Southall at the same time, 2 December, saying,
“Child D certainly has acute severe allergy. If he is exposed to any of the food allergens it may well be necessary for him to receive adrenaline, either inhaled or injected…With regard to being cared for in a wheelchair, as far as I am aware this is neither necessary nor actually happening”.
A That is correct.
Q Did there come a time – the correspondence I have taken you to is 1997 – where you started requesting your son’s notes?
A I did make a complaint to the General Medical Council, because I felt the seriousness of Professor Southall’s actions --
Q I am not asking about the complaint to the General Medical Council.
A It is because the General Medical Council asked me to get the medical records. That is when I started to access the records. That was in October 1997.
Q Could you look, please, at Section (k) in C2. Do you have that?
A Yes, I do.
Q Is this letter in your handwriting?
A It is.
Q It is a letter from you to a Mr Blythin. Who is Mr Blythin?
A I think he was under Mr Fillingham at North Staffordshire General Hospital. He was not the Chief Executive, but I had been given his name when I contacted the hospital by phone and they said that this was the person to write to.
Q So you wrote in October 1997 to that person at North Staffordshire Hospital saying you would like a copy of your son’s notes,
“He was an in-patient under Professor Southall in the City General Hospital December 1994”.
A That is correct.
Q As a result of that did you get any notes?
A I received 18 pages, because they itemised the bill and I was quite shocked at
the relevant few pages in the medical records that were sent to me.
Q So you received 18 pages. Did you feel that those 18 pages were complete?
A I knew that they were not complete because of other records I was aware that had been sent to Professor Southall before I had asked for the records. They were not in those records.
Q Did you then write, in November 1997 – letter number 2 – on 30 November 1997?
A I faxed this letter to Mr Fillingham at North Staffordshire.
Q Who is Mr Fillingham?
A He is the Chief Executive at the North Staffordshire Hospital.
Q Did you say,
“I have recently received copies of my son’s medical notes held at Staffordshire Hospital. These appear to be incomplete. It also appears that there are two files held on my son”.
A That is correct.
Q It continues,
“Under the Access to medical health Records 1990 I would ask for copies of these notes also.
According to the Act, exceptions can only be applied if information is likely to cause ‘serious harm’ – note, ‘serious harm’ not, for example, distress.
Therefore I see no reason for Professor Southall to withhold any notes held on my son. There are certain letters and reports that I am requesting”.
Did you go on to identify the file numbers after you said, “Yours sincerely”?
A I did.
Q Is one of them ending 22043, and is that the note that you received from that file?
A That is correct.
Q Does the other file end in SC3874. Did you receive anything from that file which you had identified?
A I received nothing from the file, but in the file I had received there were, on a few of the pages, the heading “SC” and it was because I noticed it was a different number. That is why I gathered at that time that there must be another file, because there were two different numbers in those medical records. Because it was incomplete, I felt that that would be the only possible explanation, that there were two files.
Q Did you get an acknowledgement of that letter on 22 December 1997? We can see the acknowledgement begins on page 4 relating to the letter asking for the file SC3874. On page 5 there is a letter from Mr Fillingham saying,
“I have since received your letter of 30 November and confirm that the issues raised in this letter will be investigated and that I will respond to the new points you have raised as soon as possible”.
A They acknowledged my letter, but they rarely referred to what I had asked, which was about the SC file, but they did acknowledge the letter.
Q Did you reply to that letter on 7 January 1998, which we have at page 6,
“Following on from my last letter I felt it was important that you were aware of the letter from Jonathan Haverson to Professor Southall 10 December 1996. This was not in D’s notes from Staffordshire. Also a letter from Dr Franklin May 1997, letters from Professor Warner as recently as November 1997. I requested my son’s notes from Mr Boughey and was charged £54. This was for incomplete notes. Also approx 18 pages were copied and sent and charged for”.
Did you get a reply to that letter of 12 January from Mr Fillingham indicating,
“Thank you for your recent letter providing me with further details of your complaint”.
At that time were you principally complaining about the treatment of your son at the hospital generally?
A That is correct.
Q He said,
“There are a number of issues on which you require clarification and further explanation. This being the case I have written to Mrs Hopper, Business Manager”,
asking her to look into the matter.
A I think he asked Mrs Hopper to investigate my original complaint.
Q Did you return to your chase for the SC file later in January, which we can see on page 8 where you said in the letter dated 16 January 1998,
“Dear Mr Fillingham, I would like to have access to my son’s file, letters in SC3874 as soon as possible. Does this file contain analysis of the tape saved during D’s admission in December 1994? Also, would it be possible to explain why I did not receive this when I first asked for access to all of D’s hospital records?”
A I did carry on chasing the file because Professor Southall was still not accepting professor Warner’s diagnosis and I felt that this may help with the complaint and also to show that my son indeed did have problems in the hospital.
Q Did you, on 20 January, set out a long letter – this is the letter at page 9 dated 20 January 1998 –
“Thank you for your letter of 12 January saying you have asked Mrs Angela Hooper to re-open the investigation of my original complaint”.
Again, your original complaint was about the treatment of your son generally in hospital.
A That is right.
Q You say,
“The hospital has now had more than three months to complete investigations into my complaint. Despite your kind offer of assistance, I cannot accept further delays.
I would ask for overdue access to the contents of my son’s SC file and any other files the hospital holds. Also the specific letters that were missing from the file sent to me by Mr Boughey”.
A That is correct.
Q Did you set out a number of matters that you felt outstanding with the hospital at that time? Can I take you, please, to paragraph 14 of the matters, which we see at the bottom of page 10? At paragraph 14 of your complaints did you set out:
“He kept a secret medical file …”.
A Sorry, that is “separate.”
Q I am sorry, I was corrected by the witness. I did not mean to raise the temperature with that and I do apologise.
“He kept a separate medical file on [Child D] into which part of [Child D’s] medical record was placed, which meant [Child D’s] official record was incomplete and he was denied his statutory right to access the whole of his medical record.”
A That is correct.
Q Did you add another paragraph, paragraph 15:
“The evidence suggests that the existence of this separate filing system was not known to the authorities of North Staffordshire Hospital, otherwise the contents of this file would have been disclosed earlier.”
A I did write that because I felt I did not understand the reason why the file was not being released.
Q Did you end by saying that you hoped that this clarified some of the issues along with the concerns in your last letter?
A That is correct.
Q Then did you get a reply from Mr Fillingham on 3 February, which amongst other things indicated (this is the fourth paragraph down):
“I appreciate your concerns relating to the release of [Child D’s] medical records. Given the complexity of your complaint and the nature of the medical records it has been necessary for me to seek advice from the Trust’s Solicitors, Lexington Partnership. I wish to assure you of the Trust’s co-operation in releasing the medical records as soon as possible.”
A I did, which I did not understand why they needed to contact their solicitors but that did have me worried.
Q Did you get an assurance, over the page, that if you had any further concerns or questions you were to contact him directly?
A Yes. Mr Fillingham was always as helpful as I think he was able to be.
Q On 9 March (page 14) did you write, effectively, a chaser seeking information?
A I did.
Q On 30 March did you get a letter from Mr Fillingham (page 16) and did it indicate that accompanying this letter was a document (which we will come to) and you had an apology for the length of time it had taken him to investigate all the points, and then did he go on to say:
“You have already had access to [Child D’s] medical records under unit number L22043 some time ago. As you are already aware, there has been extensive correspondence and copy documentation from agencies such as Staffordshire Social Services, Great Ormond Street Children’s Hospital …”,
and the health authority that is local to your home.
“The Trust us unable to disclose these documents as they are confidential and do not form part of [Child D’s] medical records. I would suggest that you contact these organisations directly for access to these notes providing them with your form of authority. However, enclosed are copies from [Child D’s] health records which we are at liberty to disclose under the Health Records Act 1990.”
Can you recall now what documents you got at that time in March 1998?
A I had still only received, I think on about two other occasions, just a few other letters that were just sent, I think about seven pages at one time and a few more at another, that I just put in the bundle; but they still were not significant and I did not understand why they were not sent at the same time. I did contact the other authorities at the time, especially in relation to when a strategy meeting was held on 6/3/1997 at Great Ormond Street Social Services, but I was told that because Professor Southall had chaired that meeting they were his property and that they were not allowed to release them. So, I had never seen minutes of that meeting, other than a handwritten note by Professor Stroble in Great Ormond Street records.
Q Accompanying this letter, as I understand it, was the report following the report that was made investigating your complaints generally?
A That is correct.
Q It sets out in the first page (page 18) the various matters of which you complained at the various times and it records that on 24 November part of your complaint was that it was wrong to charge a fee for further disclosure of your child’s medical records and the fee was excessive. Then it records – and these are the letters we have seen – you stated that the medical records released by the hospital were incomplete and you requested specific letters. On 5 and 7 January you raised specific complaints relating to the content of the medical records and the charge for the release of them.
A I did.
Q Then the matter re-opened and you requested, on 13 January, a response to previous correspondence and on 16 January – again, we have seen these letters already – a request for access to y our son’s files. On 20 January it is recorded – and I think it is the second point in – overdue access to your son’s special case file.
A This is the first time that I was aware that they were calling it a special case file.
Q Then the letter went on, as you see, to summarise the 17 points that you wished the Trust to address and we deal with the points 14 and 15 there, which we have read earlier under your manuscript. That is at the bottom of page 19. We have seen those in the letter you wrote.
A That is correct.
Q Then there were details given in this report of the investigation and there were details given out – and we see this at paragraph 20 – of the outcome in your investigation. It deals with the various paragraphs in your main letter of complaint, and if we go over the page to page 21 do we see that the matters relating to health records were dealt with below. Do you see that sole line on page 21?
A Yes.
Q Then coming over to page 22 is there this section on health records:
“Unfortunately we have, in error, disclosed information (letters, reports, etc.) to
[Mrs D] which were confidential to other agencies and did not form part of the health records.
The fee charged for access to [Child D’s] Health Record file was in accordance with the Access to Health Records Act 1980 and in accordance with this and North Staffordshire Hospital Trust Policy is regarded as a reasonable fee.
With regard to further correspondence requested by [Mrs D] we have, where appropriate, arranged for its disclosure.”
Did you consider that a satisfactory answer to your concerns about incomplete access to your child’s medical records?
A I did not really understand their comments because I felt that they had not answered my questions at all about a separate file and why I had not received that separate file. I think that when they said they had disclosed the information in error, that was when I did receive a few other letters that were from Professor Warner and other agencies, but they still did not make any comments on the SC file and why they were not releasing the SC file and other letters that I had specifically asked for.
Q As a result of your concerns did you take the matter up with the Ombudsman, which we can see at page 23?
A I took the complaint, yes, I did take the complaint with the Ombudsman.
Q We can see it is a letter of 22 January 1999 from you to the gentlemen there of the Screening Unit of the Office of the Health Service Commissioner for England (Ombudsman) and does it start:
“I am now in a position to provide you with all the documentary evidence you may require to investigate my case”,
and then do you go on in the bottom paragraph to say:
“It is my view that Professor Southall at North Staffordshire has not acceded to my request for access to all my son’s medical records, as the hospital claims that some of these are the property of Professor Southall, as they form part of his research. I must point out that my son’s referral was an NHS referral and at no time was my permission sought for my son to participate in any ‘research’ programme.”
A I did write this letter.
THE CHAIRMAN: Mr Tyson, we are approaching 5 o’clock. Were you intending to take Mrs D through the rest of this correspondence?
MR TYSON: I was. I was going to take her through the rest of (k), and it may be as good a time as any to stop.
THE CHAIRMAN: You do not feel the need to complete this particular section?
MR TYSON: No. She is going to come tomorrow in any event.
THE CHAIRMAN: So you can pick it up?
MR TYSON: I can pick it up. I had not realised the time, but I am perfectly content to stop now.
THE CHAIRMAN: In that case, if you are content we will stop now for today. We will reassemble at 9.30 tomorrow morning. I just need to remind you again that over tonight, this evening, not to discuss the case or your evidence.
THE WITNESS: I understand. Thank you.
(The Panel adjourned until 9.30 a.m. on Tuesday, 21 November 2006)