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CHAPTER 28

Queen's Medical Centre, Nottingham

Introduction

This chapter describes a brain collection that resulted from different procedures to those used to collect brains at Manchester and Cambridge. The collection at Queen's Medical Centre (QMC) includes brains from Coroners' cases retained for diagnosis, but no brain was retained specifically for research. Brains from Coroners' cases were only used for research after the diagnostic process was complete.
The circumstances in which brains were retained from Coroners' post mortems came to light from enquiries made into the retention in 1991 of the brain of Mr Stuart Fayle. The investigation of Mr Fayle's death is described in Chapter 29.
This chapter describes the retention procedures, the policy of 'a full post mortem examination', and reporting arrangements for Coroners' post mortems.
The only reason brains were retained from Coroners' cases was the pathologist's intention to carry out a histological examination.
There were, however, other similarities with the brain collections at Manchester and Cambridge in that retention of the brains was not always reported to the Coroners. However, the relatives were not told about brain retention.
For hospital post mortems the position was different. The relatives of some hospital patients gave specific consent for brain retention. In other cases the post mortem consent form was considered in the early 1990s to include consent for organ retention, although this was not mentioned on the form.
Sources of information
This chapter is based on:
-  what happened to the brain of Mr Stuart Fayle;
-  post mortem reports provided to the Coroner;
-  the record books of brains investigated in the Department of Neuropathology;
-  the recollections of:
Dr Chapman, Coroner for Nottinghamshire since 1993;
Professor J Lowe, Professor of Neuropathology at Nottingham since 1985;
Dr K Robson, Consultant Neuropathologist at Nottingham since 1990;
Mr Mulligan, Chief Mortician since 1974;
Mrs Lianne Ward, Head Neuropathology Technician since 1989.
The mortuary at Queen's Medical Centre
This mortuary serves a dual purpose as hospital mortuary for the Queen's Medical Centre and as the main public mortuary for the City and surrounding area. The bodies of those who had died suddenly in the community and those whose deaths were reported to the Coroner for other reasons were brought to the mortuary to await a decision by the Coroner on whether a post mortem should be carried out.
The collection of brains at Queen's Medical Centre
This brain archive is located in the Section of Neuropathology. This is a specialist centre that, in addition to examining the brains from post mortems carried out by many different pathologists at the hospital, also receives brains and brain samples from other hospitals in the region for specialist histological examination.
The Section of Neuropathology moved to Nottingham from Derby in 1985. At the time of the move a brain archive at Derby was transferred to the new department in Nottingham.
Brain books
The number and identification of all brains and brain samples referred for diagnostic examination and held by the department are all recorded in the brain books. The books list all brains or samples received since the opening of the department in 1985. The oldest brain transferred dates from 1967.
Numbers of brains retained at the Queen's Medical Centre
The brain archive at the Queen's Medical Centre in 2000, as reported to the Chief Medical Officer's Census, included 1,700 brains from Coroners' cases. These had been obtained over the previous 20 years. Approximately 100 brains from Coroners' cases had been retained annually in recent years for diagnostic review, a procedure described later in this chapter, and for other purposes.
Examination procedure
Every brain was examined histologically after fixation, Chapter 7. As fixation takes four to six weeks, the brain was not returned to the body before the funeral or cremation.
Prioritisation of histology examinations
In the years 1985 to 1995 there was a very substantial backlog of brains awaiting histological examination. The backlog was inherited when the neuropathology service transferred from Derby. As a consequence, a prioritisation policy was put in place.
Surgical specimens and brains from Coroners' and hospital post mortems where there was a possibility of unexpected findings were given priority.
The histology of brains from post mortems which were considered to have a low probability of showing anything unusual or unexpected were examined when time permitted. Priority was given to examination of samples from patients over post mortem specimens. In some cases there was a delay of months before the histology on low priority post mortem samples became available.
Disposal procedure at QMC
For each brain or sample retained for histological examination, a 'processing sheet' was raised. This would record the number of tissue blocks kept and the different stages of the laboratory procedure. When the pathologist had completed the histological examination he would decide to retain or dispose of the brain by incineration.
When there were no new or unexpected histological findings the pathologist would generally decide to dispose of the brain and would write this on the processing sheet. Brains were disposed of in batches by one of the laboratory staff when sufficient numbers had accumulated.
After each brain had been disposed of, the brain book would be marked with a 'T' to show that the disposal instruction had been carried out. The 'T' was entered by the head laboratory technician. However, the date of disposal of each brain was not recorded.
Brains that were not to be disposed of were differently marked, such as 'UC'. This would indicate where the brain was held and that it had been retained. When a brain was later disposed of, the 'UC' was crossed out and replaced by 'T'.
The decision to dispose of or retain a brain was applied without regard to the status of the post mortem from which it had been retained. All brains were considered on the same basis.
In some cases criminal or civil proceedings might follow the Coroner's inquest and in these cases the pathologist might decide to continue to retain the brain or brain samples in case they were needed in evidence.
Some pathologists at the QMC never retained brains after diagnostic procedures were completed.
The policy of conducting a full post mortem
The Pathology Department at Nottingham has always followed the policy of carrying out a full post mortem. This includes examination of the brain in all cases. The policy was adopted to ensure that no significant pathological findings were missed, and had the endorsement of the Royal College of Pathologists, Chapter 44. The College's guidance on the scope of a post mortem was first made explicit in recommendations issued in 1993, but its view that a full post mortem should be routinely carried had been well known for years before the guidance was issued.	Appendix 29
At Nottingham no distinction was made between hospital and Coroners' post mortems. The policy was that all post mortems should be conducted to the highest standards.
Coroners' cases
In implementing the 'full post mortem' policy, the brains of all Coroners' cases were routinely examined. In most cases the brain was returned to the body at the end of the post mortem.
In a minority of Coroners' cases, for example when death had followed an injury to the head, the brain would be routinely retained for histological examination. In cases of sudden death where the cause was thought to be a stroke or other disease process affecting the brain, it would be retained for histological examination.
The brain would also be retained in Coroners' cases where for medico-legal purposes it was important to exclude any disease or injury to the brain that could be relevant to the cause of death.
The reason that reports to the Coroner did not routinely mention organ retention
The late Mr Jenkin Jones, the Coroner for Nottinghamshire until 1993, told a newly appointed pathologist that the post mortem reports should provide the Coroner with the pathologist's interpretation of his findings. If the pathologist considered it was necessary to retain the brain for histological examination, Mr Jenkin Jones was content. He had not expected to be asked about organ retention on a case by case basis.
In practice, the pathologists differed in the recording of brain retention. Some reports did not refer to retention unless the pathologist expected the results of brain histology to alter the cause of death. For the same reason Mr Jenkin Jones did not expect to receive the histology reports that revealed nothing new.
There are no contemporaneous papers that document Mr Jenkin Jones' instructions, but from reading the reports sent to him the Coroner could not have known of the frequency or number of brains that were being retained.
Cases where brain histology is relevant to the cause of death
In a small proportion of cases, the pathologist considered that brain histology was essential to determine, or might alter, the provisional cause of death. Histology was given priority in these cases as the inquest verdict might depend on the findings.
The pathologist would also inform the Coroner, so that the date of the inquest would be delayed until the histology results were available. The relatives would be informed of the reason for the delay. The initial post mortem report to the Coroner would indicate that investigations were in progress.
Cases where brain histology is unlikely to affect the cause of death
In cases where, following visual examination, the pathologist considered that it was possible, but unlikely, that histology would alter his conclusion about the cause of death, the brain would be fixed. The full histological examination was not, however, given priority and in many cases was not available until after the inquest had been held.
In such cases the pathologist would not usually mention the fact that the brain had been retained in the post mortem report. The Coroner would only be informed of unexpected findings that affected the cause of death.
The pathologists working for Mr Jenkin Jones believed he was well aware of their procedures.
The backlog of brain histology reports referred to above was another reason why there was a delay of months in non-urgent cases before brain histology became available.
When did the practice of brain retention in Coroners' cases change?
When Dr Chapman succeeded Mr Jenkin Jones as Coroner in 1993, he was unaware of the extent and frequency of brain retention. Few of the post mortem reports sent to him recorded the fact of brain retention.
Dr Chapman is clear that this practice continued until 1994. He then discovered that brain retention was being widely practised without his knowledge. This had come to his attention as the result of a particular, well-remembered, case. Dr Chapman gave instructions that brains and other organs must only be retained for diagnostic purposes and with his knowledge and agreement. Dr Chapman insisted that once the diagnostic process was completed, the brain could not be further retained unless the relatives gave their consent to the purpose for which further retention was requested. Some pathologists report that Dr Chapman's instructions were conveyed verbally and that the date was later than 1994.
Practices for brain and tissue retention were eventually unified and formalised in 1999 after further discussion between the Coroner and the pathologists. These included instructions regarding disposal of retained brains and other tissues once the diagnosis was complete.
Who was aware that brains were being retained from Coroners' cases?
The pathologists, mortuary staff, and neuropathology technicians were all aware that brains from Coroners' cases were being retained. Until 1994 they believed the Coroner was aware of the practice and was content, although retention was not routinely mentioned in the post mortem report. This changed when Dr Chapman gave instructions that he should be informed and agree to all organ retention.
For their part, the pathologists believed that once a brain was retained for diagnosis it could be held after diagnosis was complete without informing the Coroner or the relatives, for the reasons set out in Chapter 42. This mistaken belief was based on the fact that the brain had been originally held under the authority of the Coroner.
As in Manchester and Cambridge, the relatives did not know as the post mortem report did not mention retention. At QMC, unless the relatives asked specifically, there was no mechanism through which they could have discovered that the brain had been retained.
As Mr Stuart Fayle's case demonstrates, when relatives did ask they were not always given comprehensive information, Chapter 29.
Reasons for prolonged brain retention after the diagnosis was completed
There were a number of reasons why brains were retained at QMC:
-  some were retained for teaching as they exhibited unusual or important features, and would be valuable for teaching and training. Prolonged retention of these brains provided an archive that could be used in future research. The value and importance of brain archives is discussed in Chapter 46;
-  in some cases the diagnosis was not certain and the significance of some histological features was not clear. In these the initial diagnosis was, in effect, provisional. The brain and/or slides were retained to enable the diagnosis to be reconsidered at a later date. Retention in these cases was an extension of the diagnostic process;
-  brains were also retained at QMC for 'diagnostic review'. This term is generally used to refer to the reexamination of the slides to confirm or amplify the original diagnosis. That use of diagnostic review is directly relevant to the disease that affected the deceased;
-  following diagnosis, some brains retained for the purposes stated above have also been used for research into the classification of neuropsychiatric diseases, including dementia.
In summary, the reasons for prolonged brain retention were for teaching, 'diagnostic review', audit and research. Brains from Coroners' and hospital cases were retained for all three purposes.
The purpose of 'diagnostic review'
At QMC the term 'diagnostic review' was also used to describe a different procedure where groups of brains from patients who had died of similar neuropsychiatric diseases were reexamined to identify new and previously unrecognised diagnostic sub-categories. Brain archives and collections are essential for this work and the future of neuropathology would be seriously hampered without such reviews. The Neuropathology Department at QMC did not regard this type of 'diagnostic review' as research for the reasons set out in Annex 89.	Annex 89
It is argued that this form of 'diagnostic review' should not be regarded as research as no specific hypothesis is being tested. Also, with rare exceptions, the knowledge gained will not alter or affect the cause of death as reported to the Coroner.
However, in my view, when 'diagnostic review' is used in this way it is unquestionably a form of research. When brains are re-examined for previously unidentified features, the outcome of the process is unknown. The purpose of the re-examination is the enhancement of knowledge. This is a research process to improve diagnostic accuracy. It is a valuable procedure that has the potential to identify previously unrecognised conditions. One recent example was the identification in 1996 of variant CJD as a new condition.
However, the argument that diagnostic review is not research misses the central point of this investigation. The Human Tissue Act requires that relatives should be informed of brain retention when the purpose has nothing to do with the Coroner's investigation, as provided by the Coroners Rules. Diagnostic review, however, plays no part in the Coroner's proceedings as the cause of death has been given to the Coroner long before any review process begins.
At QMC the relatives were not asked for their consent to diagnostic review until 2000.
In Coroners' cases, should the views of the relatives influence the decision to undertake a full post mortem and/or brain retention?
This issue will be considered in Chapter 45, which discusses the purposes of a Coroner's post mortem and the extent to which the objections of relatives should influence the extent of the post mortem.
Were brains retained from Coroners' cases ever transferred elsewhere for research?
Some brains were referred to other specialist centres for purely diagnostic reasons and there is an audit trail of referred material held by the QMC laboratory. Importantly, all material referred away for such investigation has been returned to QMC where it is archived.
Apart from these diagnostic referrals, the only brains sent to other centres were some from patients with schizophrenia that were referred to the Neuropathology Department at Charing Cross Hospital in the early 1990s. These brains were all returned to QMC in 2000(1).
Apart from these cases, Professor Gavin Reynolds took some brain specimens for neurochemistry examinations when he transferred from Nottingham University to Sheffield University in 1989. He continues to retain the brain samples originally referred to him. Samples held are carefully documented.
No other brains had been sent or referred to other centres since 1989 except for particular diagnostic purposes, for example, the referral of a suspected brain to the CJD Surveillance Centre in Edinburgh.
Appointment of nurse advisers
The QMC responded promptly to public concerns and emerging guidance about retained organs and appointed three specialist nurse advisers to help, counsel and assist relatives who made enquiries about retained organs. The nurse specialists remain in post and are available to discuss organ and tissue questions with relatives of those who have died in the hospital and in cases reported to the Coroner. The nurse specialists also assist relatives who have made enquiries about retained organs and work closely with the QMC's bereavement services.
Summary
Approximately 1,700 brains from Coroners' cases are retained in the collection at Queen's Medical Centre, Nottingham. These have been accumulated mostly since 1970 but the oldest brain was retained in 1967.
All the brains were obtained or referred from other hospitals for diagnosis. None was collected solely for research.
Brains from Coroners' cases were retained as part of the routine of a 'full post mortem', with brain retention in all head injuries and other cases where brain pathology was considered likely, or needed to be excluded, from the cause of death.
Post mortem examinations at QMC were carried out to the 'highest standards' as widely practised in the late 1980s and early 1990s.
The large majority of brains were disposed of after the diagnostic process was completed.
No distinction was made between the way brains from hospital and Coroners' cases were investigated.
Some pathologists at the Queen's Medical Centre never retained brains for research, teaching or for 'diagnostic review'.
The fact of brain retention was, until 1994 with some exceptions, not reported to the Coroner or recorded on the post mortem report.
The relatives, with a few exceptions, had no way of knowing that the brain had been retained after a Coroner's post mortem.
When the diagnostic process was complete, the pathologist would decide whether to dispose of or retain each brain.
The relatives were not informed when brains were to be disposed of.
Brains retained for prolonged periods were kept for teaching, research and diagnostic review.
For Coroners' cases the purpose of the post mortem is to establish the cause of death. Diagnostic review has no part in establishing the cause of death in a Coroner's case.
Whatever the status of diagnostic review, the relatives should have been informed when a brain from a Coroner's case was retained for review purposes.
The nurse advisers at QMC provide a most valuable source of advice and counselling to bereaved relatives in Nottingham.
References
1.   Records of the Neuropathology Department at QMC.

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