Claire Roberts Name: Ian Young Title: Professor Present Position And

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Claire Roberts Name: Ian Young Title: Professor Present Position And Witness Statement Ref. No. 178/2 NAME OF CHILD: Claire Roberts Name: Ian Young Title: Professor Present position and institution: Professor of Medicine and Director of The Centre for Public Health, Queen’s University Belfast Previous position and institution: [As at the time of the child’s death] Membership of Advisory Panels and Committees: [Identify by date and title all of those between January 1995-August 2012] Previous Statements, Depositions and Reports: [Identify by date and title all those made in relation to the child’s death] OFFICIAL USE: List of previous statements, depositions and reports attached: Ref: Date: 096-007-039 Statement to the PSNI 091-010-060 4th May 2006 Deposition to the Coroner WS-178/1 14th Sep 2012 Inquiry Witness Statement 1 INQ - CR WS-178/2 Page 1 Response to reports of Dr.R MacFaul on Claire Roberts Professor Ian S.Young The purpose of this report is to respond to incorrect statements made by Dr MacFaul in relation to fluid management of Claire in 1996, which subsequently translate through to criticisms of the information given to Claire’s parents in 2004. I wish to highlight major factual errors in his original report, repeated throughout, which he corrects inadequately and to a limited extent in his supplementary report. Despite this limited correction, Dr MacFaul fails to withdraw criticisms based on the major factual errors which he has made. Factual errors in Dr.MacFaul’s report: Throughout his report Dr MacFaul repeatedly refers to the following information from the major paediatric textbook (Forfar and Arneil) in support of his statements and criticisms. This first occurs at 238-002-044 and the text in bold is then cited repeatedly in the remainder of his report: “206. The management of coma and encephalopathy relevant to the time has been included in the Advanced Paediatric Life-Support curriculum and its associated manuals. One important example is from the standard Textbook widely used in United Kingdom containing advice which would have been relevant and updated by the mid- 1990s. Textbook of Paediatrics. Forfar & Arneil Third edition 1984 Page 791 et seq. which includes : b. In many cases treatment of cerebral oedema is required to be presumptive. Fluid should be restricted to 60% of estimated daily requirements; low sodium containing infusions like 5% dextrose or 0.18% saline in 5% dextrose are contraindicated…...” 2 INQ - CR WS-178/2 Page 2 At the time of Claire’s treatment, the 1984 third edition of Forfar and Arneil was 12 years old. In many respects it was completely out of date and had been replaced by the fourth edition of the textbook, published in 1992 and reprinted in both 1994 and again in 1996. The section of the textbook which Dr MacFaul relies on and reproduces in annex A of his report had been re-written. The sentences highlighted above in bold by Dr MacFaul and referred to repeatedly throughout his report had been completely removed from the updated edition of the textbook and no comparable sentences or warnings are to be found. I am astounded that someone appointed to provide expert advice to a major enquiry of this importance would rely for a key aspect of his report on a 12-year-old textbook which had been out of date for at least four years before the critical period and would then proceed to criticise aspects of management and information provided on this basis. Any doctor providing treatment based on a recommendation in an out of date textbook, subsequently removed in the current edition, would, in my opinion, be subject to severe criticism. I include as an attachment the relevant pages from the fourth edition of the textbook (1996 reprint) which was the current edition at the time of Claire’s admission (page 771- 778). These pages are completely different to the 1984 edition pages cited and used by Dr.MacFaul. The 1996 edition (valid since 1992) makes no reference to the need to restrict intravenous fluids in the management of encephalopathy or to the need to avoid 0.18% saline. In addition I attach a key section from earlier in the textbook (479-480) dealing with the syndrome of low sodium and water intoxication, including the syndrome of inappropriate antidiuretic hormone secretion, which does not mention encephalopathy at all. The inquiry throughout has been keen to establish the knowledge which various doctors had of Forfar & Arneil and clearly views this as an authoritative source reflecting current practice in paediatric management at the time of Claire’s admission. It is therefore crucial that there is no suggestion from 1992 onwards that fluid should be restricted to 3 INQ - CR WS-178/2 Page 3 60% of daily requirements or that 0.18% saline in 5% dextrose in contraindicated in this setting. Sections of Dr MacFaul’s report which state this and the criticisms which flow from his incorrect citation of an out of date textbook are simply wrong and should be corrected or withdrawn. Dr MacFaul addresses his error in a very incomplete way in his supplementary report: “wording as specific and direct as in the 1984 textbook has not appeared in publications since then”. However, this correction is totally inadequate. The truth is that words to this effect are completely absent from the 1996 contemporary edition of Forfar & Arneil. They have been removed and nothing comparable is included. In reality, in 1996 there simply was not any general or widespread understanding that there was a routine need to restrict fluid intake in encephalopathy and to use fluid with a higher sodium content than 0.18%. Dr Scott-Jupp comments at 234-002-012 “As late as 2003 standard paediatric textbooks and pocket handbooks in both the UK and the US were still recommending hypotonic saline (0.18% or 0.25%) as a possible choice of standard IV fluid management.” There may have been occasional units (such as Dr MacFaul’s own) where this formed part of a local protocol. However, this guidance was not part of the recommended treatment in major textbooks of the time having, in the case of Forfar & Arneil, been removed as a recommendation in 1992. At 238-002-044 Dr.MacFaul indicates that the Pinderfields’ protocol had been in use since the middle of the 1980s. Therefore, this may have been drawn up based on the 1984 edition of Forfar and Arneil, and not modified following the publication of the 1992 edition of the textbook. Indeed, it seems that until recently Dr.MacFaul was simply unaware of contemporary guidance on management in 1996 as stated in the textbook, since this has only been drawn to his attention after he compiled his initial report. Dr MacFaul at 238-002-090 comments “Neither of the Coroner’s experts seem aware of guidance on fluid management of acute encephalopathy which related to 1996 and before aiming to prevent hyponatraemia”. At 238-002-086 he comments “Prof Young does not 4 INQ - CR WS-178/2 Page 4 seem aware of guidance on fluid management of acute encephalopathy which related to 1996 and before.“ However, the guidance to which Dr.MacFaul refers related to an out of date textbook. As stated by Dr.Bingham (Great Ormond Street) to the Coroner in 2005 and recorded at 238-002-090 in reference to the initial intravenous fluids provided to Claire: “This is a fluid prescription was in line with the practice of the time and although current guidance would be to use fluid with a higher sodium content in this situation this advice did not exist in 1996." The person who was unaware of guidance on fluid management of acute encephalopathy which related to 1996 is Dr.MacFaul. As indicated by Dr MacFaul in his supplementary report, by 2001 there was some recognition of the problem of hypotonic fluids in contributing to cerebral oedema which was beginning to gain more widespread traction. MacFaul refers to Kirkham FJ.Non-traumatic coma in children. Arch Dis Child 2001;85:303-312, where it was stated that hyposmolar fluids such as 5 % dextrose are contra- indicated, although even then it did not specifically highlight hypotonic fluids ( 0.18 % saline in 4 % dextrose is hypotonic not hyposmolar). However, this is five years after Claire’s hospital admission and does not represent relevant contemporary evidence, which is considered below. Guidance on fluid management before and after 1996: The purpose of this section is to indicate with reference to contemporary literature the level of awareness of hyponatraemia and its management before 1996 and up to 2004. Arieff et al. in the BMJ in 1992 described 16 cases of hyponatraemia in children undergoing surgery, 15 fatal (BMJ 1992;304:1218-22). This was not the first description of fatal hyponatraemia in children, but was the first paper which may have been noticed by a wide readership as it was published by a significant UK journal. They concluded that “The hyponatraemia in these children seems to have been caused by extensive extrarenal loss of electrolyte containing fluids and intravenous replacement with hypotonic fluids in the presence of antidiuretic hormone activity”. This was undoubtedly a key observation, though not of direct relevance to the management of Claire Roberts, but a considerable period elapsed before this significantly influenced routine practice, as demonstrated below. Arieff went on to publish a review of the management of hyponatraemia in 1993 5 INQ - CR WS-178/2 Page 5 (BMJ1993;307:305-8). This review again highlighted the increased risk of hyponatraemic brain damage in children, and indicated the following contributory factors: “Recent evidence suggests that contributory factors to hyponatraemic brain injury may also include (a) systemic hypoxaemia; (b) a direct vasoconstrictive effect of antidiuretic hormone on cerebral blood vessels; (c) female sex; (d) physical factors; and (e) pre-existing liver disease, alcoholism, or structural lesions in the central nervous system.” The only caution given against the use of hypotonic fluids relates to the post- operative period, and there was no mention of the need to restrict hypotonic fluids in other settings such as encephalitis/encephalopathy.
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