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The Investigation of Events that followed the death of Cyril Mark Isaacs
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| This chapter describes the reasons and methods used to correlate the features of the patient's neuropsychiatric condition with post mortem brain findings. | |
| Reasons for collection of medical details | |
| The research team needed to obtain information from the patient's medical records. For patients with neuropsychiatric disorders, one important reason for this information was to validate the diagnosis of Alzheimer's disease, schizophrenia or another condition. | |
| For control cases, access to patients' records was equally important as the team needed to check that the patients had not experienced any neuropsychiatric disease. | |
| A further reason for checking the records was to document any medication the patient had been receiving prior to death, and to obtain other relevant history or lifestyle information. | |
| Sources of data | |
| The mortuaries contributing brains to the programme provided basic details of the patient's name, date of birth, date and time of death, date and time of post mortem examination and cause of death. The name of the patient's general practitioner was also recorded when this was known. | |
| Retrieval of information | |
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Hospital patients |
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| A member of the research team would request the hospital case records some weeks after the patient's death in order to extract relevant clinical information. The abstraction of this data was not urgent and in many cases took place several months after the patient's death. | |
| Deaths in the community | |
| It was more complex to retrieve data about patients included in the programme who had died in the community. Many were sudden deaths reported to the Coroner so that the cause of death could be established. | |
| In these cases, the team would try to identify the name of the general practitioner who had looked after the deceased in life. If this name was not provided at the time the brain was received, the team would make enquiries through the Coroner's office. In all cases where there was no information available from hospital records, a letter signed by, or on behalf of, Dr Deakin was sent to the general practitioner. | |
| A copy of the standard letter was sent to Dr Rosenberg, Mr Isaacs' general practitioner. (Its discovery by Mrs Isaacs led to the setting up of this investigation.) This letter was used in the early years of the joint programme. It was later replaced by a different letter which also refers to 'post-mortem samples of brain tissue from the patient(s) for use in schizophrenia research'; and, as a footnote, 'this research is carried out under the auspices of all local ethics committees'. | |
| It will be seen that the format of the first form was designed to provide the research team with sufficient data to classify each brain into one of three categories: | |
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| The form used later was specifically about patients with schizophrenia. This form was only sent after an initial telephone conversation with the deceased's general practitioner. | |
| Further enquiries | |
| If the initial request form to the general practitioner was not returned, a further reminder form would normally be sent, followed up by a telephone call and sometimes a visit to the general practitioner. | |
| Enquiries about Mr Isaacs | |
| Dr Rosenberg was sent the form at Annex 15. He did not return it, Chapter 4. | |
| In Mr Isaacs' case, Dr Rosenberg would have known that his death had been reported to the Coroner, but this would not necessarily have been the case in other sudden deaths. The form sent to Dr Rosenberg is no different from other forms, copies of which remain in the brain books. | |
| Further communications followed, and some general information was provided over the telephone. While this referred to 'no formal psychiatric history', the information was not considered to be sufficiently detailed. For this reason, Mr Isaacs' brain was not used in the programme. The relevant entry in the brain book reads: 'Notes unavailable since civil suit against GP in action'. | |
| Features of the letter sent to general practitioners | |
| The misleading features of these letters were discussed in Chapter 18. | |
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Summary |
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| The design of the joint programme required collection of data from the deceased's medical records to establish the suitability of each brain for the research programme. | |
| For patients who had died in hospital, the hospital records were obtained by the research team at an appropriate interval after death. These records were abstracted for information on neuropsychiatric history, medication at the time of death and any previous contact with the psychiatric services. | |
| For deaths in the community, this information was requested by letter from the general practitioner of the deceased. Where the letter received no response, further attempts were made to obtain the medical history. The wording of the letter to general practitioners gave a misleading impression that brain samples only had been retained. In reality, the whole brain had been obtained in most cases. | |
| The reference to Ethical Committee approval obscured the fact that the Ethics Committees consulted had not been informed of the inclusion of cases of sudden death in the community and other deaths reported to the Coroner, Chapter 18. | |