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The Investigation of Events that followed the death of Cyril Mark Isaacs
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| This chapter sets out: | |
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Sources of information |
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| The chapter is based on copies of contemporaneous correspondence provided by Professor Deakin. Other letters and documents were obtained from LREC records. | |
Background |
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| By 1988 the research team had made good progress and had reported exciting findings to the NWRHA. An application for further funds had been made to the NWRHA. To build on their earlier work and to investigate the role of glutamate on the neurotransmitter systems, the programme needed more brains to investigate. | |
Disseminating information to clinicians in nearby hospitals |
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| Dr Deakin's successful discussions with consultant psychiatrists at Prestwich Hospital and North Manchester General Hospital in 1985/86 had shown that, when the programme based on research on hospital inpatients was explained, clinicians would generally support it. | |
| To encourage doctors in other hospitals to refer suitable patients, the research team prepared separate papers, one for doctors, the other an explanation for relatives. The latter described in less technical terms the purpose of their investigations of the neurotransmitter systems of patients with Alzheimer's disease and schizophrenia. | |
Letter for doctors |
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| The letter explains: 'The physiology department had developed a way of assessing the integrity of the cortical glutamatergic neurone' and requests: 'It would be a great help to our research if you would ask the relatives of a patient who has died, for permission to carry out a post mortem examination'. | |
| A copy of the letter for clinicians dated 17 October 1988, prepared by Dr Deakin, is at Annex 45. | |
Explanation for relatives |
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| To accompany this letter was a single page explanation which the doctor could give to the relatives of the patient when raising the question of consent for brain retention. The note explains: 'At Manchester University a programme of research has been set up to investigate the brain chemistry in people who have died and who suffer from Alzheimer's disease in life. Some significant new results have already emerged.' | |
| A similar note was prepared for the relatives of patients with schizophrenia. | |
Approaches to Ethics Committees and consultants at 'new' hospitals |
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| Between 1988 and 1991 Dr Deakin wrote to consultants at hospitals in Bolton, Macclesfield, Oldham, Rochdale, Stepping Hill, Warrington and Wigan. There may have been approaches to other hospitals but any correspondence is no longer available. | |
| The initial letters to a 'new' hospital were sent to a consultant psychiatrist or, occasionally, to a consultant pathologist. These letters would follow the draft referred to above and would enclose a copy of the notes prepared for relatives. | |
| Other letters followed to chairmen of the ECs. These invariably mentioned approval of the research by Salford EC and the Ethics Committees of North and South Manchester. | |
Form of acknowledgement for brains collected |
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| The joint team introduced, on an unrecorded date, a form to acknowledge the collection of brains for the programme. The form appears to have been intended for pathologists and possibly morticians who had already provided a brain. | |
The hospitals and ECs contacted |
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Bolton |
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| Very little information remains available about the approach to consultants at Bolton. | |
| Dr Deakin received a letter dated 20 April 1990 from Dr Mahadevan, Consultant Psychiatrist at the John McKay Clinic, Royal Bolton Hospital. Dr Mahadevan wrote: 'The Psychiatrists in Bolton would be happy to co-operate with your research, provided of course that the proposal is approved by our District Ethics Committee'. | |
| No brains were obtained from hospitals in Bolton. | |
Macclesfield |
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| Dr Deakin wrote on 17 October 1989 to Dr Williams in the Department of Pathology at Macclesfield General Hospital: 'My psychiatric colleagues at Parkside Hospital have agreed to request academic post-mortems on any of their schizophrenic patients who die in hospital. However, this cannot go ahead unless the department of pathology and the mortuary staff are in agreement'. | |
| On the same date Dr Deakin wrote to Dr Walter Brodie (sic), Consultant Psychiatrist at Parkside Hospital. He enclosed a copy of the leaflet for patients' relatives. | |
| Dr Braude replied on 23 October 1989: 'Do we need to get specific written consent from relatives and if so, could you supply us with the relevant forms?' Dr Braude also advised Dr Deakin to write to Dr Wills, chairman of the local Ethical Committee, to obtain approval for the research project. | |
| Dr Deakin wrote to Dr Wills on 9 February 1990: 'This application has been approved by the South Manchester Health Authority, by Salford and by North Manchester'. | |
| On 13 February 1990 Dr Deakin wrote again to Dr Braude: 'Written consent should probably be obtained from the next of kin'. Dr Deakin added: 'Often chronic inpatients don't have next of kin, in which case there is no difficulty'. | |
| In a letter to me dated 10 January 2003 Professor Deakin states 'This is the sole reference to patients without next of kin in correspondence with hospitals in the NW. The next paragraph refers to obtaining the necessary consent forms for the post mortem from the Pathology Department'. | |
| What was not mentioned in Dr Deakin's correspondence to Dr Braude is that in cases of patients who die in hospitals but without known relatives, guidance in HC(77)28 applies throughout the NHS, see Chapter 5. This guidance requires consent by the 'person lawfully in possession of the body'. It should not have been assumed that consent would be given in every case, particularly when the patient was suffering from mental illness at the time of his death. | |
| The reply and decision of the Macclesfield Ethics Committee are not available. | |
| In the brain books there is a single reference to 'Parkside' as the source of one brain but it is not clear if the brain in question came from Parkside Hospital, Macclesfield. No other brains are recorded coming from Macclesfield. | |
Oldham |
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| On 10 September 1990 Dr Deakin wrote to Dr Wallis, chairman of the Ethics Committee for Royal Oldham Hospital, enclosing a copy of the protocol that had been submitted to the South Manchester Ethics Committee in 1986 and requesting the Oldham Ethics Committee's approval of the joint research programme. Dr Deakin had previously written to the Division of Psychiatry at Royal Oldham Hospital. | |
| Dr Deakin was invited to attend a meeting of the Ethics Committee on 18 October, but was unable to do so. On 2 November Dr Wallis replied giving the EC's approval adding: 'It was the considered opinion of the members that a direct approach to the relative was preferable to a telephone call and that contact should be made either by you or a senior clinician'. | |
Brains obtained from Oldham |
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| Oldham is part of the district of the Coroner for North Manchester. | |
| Between 1986 and 1996 six brains were obtained from Coroner's cases. These were all from patients with schizophrenia or other psychiatric disease. No brains were obtained from hospital post mortems(1). | |
Rochdale |
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| On 10 September 1990 Professor Deakin wrote to Dr Purnell, chairman of the Rochdale Ethics Committee. The Committee had responsibility for Birch Hill Hospital, Rochdale. Dr Deakin enclosed the protocol dated 17 July 1986, adding that 'The research is approved by the South Manchester Health Authority Ethics Committee and in Salford and North Manchester'. | |
| On 7 November Dr Purnell asked Dr Bowker, Consultant Psychiatrist at Birchill, how many patients would be involved and whether these patients would normally be submitted to a post mortem examination. | |
| Dr Bowker replied on 17 December that the number of patients involved would be not more than half a dozen in a year: 'It would not be our usual practice for these patients to have post mortem examinations'. | |
| Dr Deakin was invited to the Ethics Committee meeting on 15 February but was unable to attend. | |
| Dr Purnell wrote to Professor Deakin on 22 February 1991 indicating that the study had been approved. The title referred to 'Brain Research in Schizophrenia (Trial No. 120)'. Dr Purnell asked whether a full post mortem would be carried out and 'whether your department would be paying for the post mortem examination'. | |
| On 5 March Professor Deakin replied: 'A full postmortem is not always carried out, this is at the discretion of the pathologist. We pay a small fee to the mortuary technicians and any undertakers fees.' | |
Brains obtained from Rochdale |
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| Rochdale, like Oldham, is part of the district of the Coroner for North Manchester. The retention of brains from Coroner's cases, on the instructions of the Coroner's office, was confirmed by PC Rigg, the Coroner's Officer for Rochdale, and Mr Owen, the mortician at Rochdale mortuary. | |
| Thirty-four brains from Coroner's cases were obtained from Rochdale mortuary between 1986 and 1996. Three of these were categorised as 'controls'. Many of the other cases had psychiatric conditions. Only one brain was obtained from a hospital post mortem in Rochdale. | |
Stepping Hill Hospital |
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| Dr Deakin wrote early in 1990 to Dr Bhattacharyya, Consultant Psychiatrist at Stepping Hill Hospital. On 25 April 1990 Dr Bhattacharyya replied: 'Our Divisional Meeting approved your request regarding brain research into schizophrenia. I have written to Dr Dymock'. | |
| Dr Dymock was the chairman of the Stepping Hill Hospital Ethics Committee. | |
| No other correspondence is available and there is no record of the Ethics Committee reply. | |
Brains obtained from Stepping Hill Hospital |
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| Five brains were obtained from Stepping Hill Hospital between 14 April 1990 and 12 March 1992. Four were from hospital post mortems and one was a Coroner's case(1). | |
Warrington |
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| The correspondence and retention of brains from Warrington General Hospital is described in Chapter 15. | |
Wigan |
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| On 28 March 1990 Dr Deakin wrote to Dr Thomas, Chairman of the Division of Psychiatry at Billinge Hospital near Wigan, to inform him of the neurochemical research in schizophrenia. | |
| Dr Thomas replied on 23 May indicating that the consultants in the Department of Psychiatry would support the programme after ethical approval had been given by the Wigan Ethics Committee. | |
| Dr Deakin wrote to Dr McGucken on 10 September requesting Ethical Committee approval and enclosing the protocol dated 17 July 1986. | |
| On 29 October the secretary of the Committee replied that approval had been given, subject to: 'satisfactory arrangements being made with the responsible Consultant for either yourself or that Consultant to approach the relatives for permission to carry out a post mortem'. The Committee asked for progress reports and enclosed a proforma for that purpose. | |
| There is no record that any brains were obtained from Billinge Hospital. | |
Central Manchester Health Authority |
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| Dr Slater and Dr D'Souza, consultant in the University Department of Child Health, submitted an application to the Ethical Committee in April 1991 for a study entitled: 'The Development of Amino Acid uptake sites and receptors in human brain'(reference number 37/91(I) (d)). | |
| The Central Manchester Clinical Research Ethical Committee approved this application on 22 July 1991. In doing so, the Committee: 'wished to be kept informed of progress during the course of your research activity'. | |
| After this study was approved, Dr Slater and Dr D'Souza approached Dr Barson, Senior Lecturer in Pathology, about obtaining brain samples for this investigation. | |
| Dr Barson replied on 18 December 1992: 'I write to confirm that I am willing to supply samples of human brain tissue to you for the purposes of your medical research funded by the Medical Research Council subject to the constraints laid upon me by the Human Tissues (sic) Act'. | |
| Although research on brains of children was not part of the joint programme, Dr Barson's reply is relevant as it should have reminded Dr Slater of the constraints of the Human Tissue Act. The Ethics Committee had emphasised the importance of the Committee receiving progress reports on projects that had been approved. | |
Approach to pathologists in 1995 |
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| On 28 March 1995 Professor Deakin wrote by fax to Professor John McClure at the Manchester Royal Infirmary to ask for his comments on a draft letter that had been prepared for circulation to pathologists in the Manchester area. | |
| The draft letter entitled 'Research Programme on Neurodevelopmental Abnormalities in Psychiatry' includes: | |
| 'At present, we are collecting brains from patients who undergo a hospital post-mortem. We are, however, also discussing with Local Coroners whether we can have access to tissue from Coroner's cases. We anticipate the number of brains collected from each hospital to be small - perhaps as little as one or two a month, as we have set very stringent criteria for the quality of the brains'.(2) | |
| The wording of this paragraph is notable as it implies that discussions with Coroners were a new initiative. This overlooks the fact that at the time this draft letter was prepared more than two-thirds of the brains already collected had been obtained from Coroners' cases. | |
| Professor McClure replied to Professor Deakin by fax on 4 April 1995. | |
| 'Thank you for your recent draft letter regarding the above. I am afraid the matter is now not very simple. Several years ago it was relatively easy to allow materials from post mortem examinations to be used in the manner in which you describe. Unfortunately the vast majority of our cases coming through the mortuary are cases which the local Coroner has asked for the post mortem examination. It is, therefore, necessary for you to obtain from the Coroner permission for the use of brain tissue which you outline. I know from previous experience that he will probably say 'yes' but you will also have to obtain permission from the immediate relatives of the deceased and it is your responsibility to do so. This may not be particularly easy in cases of sudden and unexpected death in the community. For the very small number of cases which are not reported to the Coroner and which are hospital cases, then the consent form which the relatives sign will allow you to have the materials which you requested. I and my colleagues (I have discussed it with them) would have no objection whatsoever to letting you have tissues from these cases. Unfortunately for you these cases are likely to be very small in number and you will not be able to collect at the rate which you suggest. The bottom line is that you need now to discuss your proposals with Mr. Gorodkin, the Manchester Coroner'.(3) | |
| Professor McClure's response appears to have led Professor Deakin to request the meeting with Mr Gorodkin which took place on 26 June 1995, see Chapter 22. | |
| It is not clear from the papers available to me if any letters were sent in an amended form to local pathologists. The brain book entries show that no brains were collected from mortuaries that had not previously been involved. | |
Lack of progress reports to Ethics Committees and LRECs |
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| No progress reports are contained in the records of the Prestwich and North Manchester Ethics Committees and no other reports to any Ethics Committee by the joint programme were identified during the course of this investigation, although several Committees had specifically asked for these. The NHS circular HSC(91)15 required researchers to provide these and to inform the LRECs of any changes to projects that had been approved by Ethics Committees. | |
Summary |
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| To increase the number of brains retained, Dr Deakin approached consultants in seven hospitals near Manchester between 1988 and 1991. | |
| Standard drafts were used to interest clinicians in other hospitals in providing brains for the joint programme. | |
| The clinicians all required Ethics Committee referral and approval before agreeing to participate in brain collection for the joint programme. | |
| When Ethics Committees were contacted, the protocol dated 17 July 1986 was offered and reference was routinely made to approval already given by Salford and North Manchester Ethics Committees. | |
| Brain collection at Oldham and Rochdale had started before the Ethics Committees were approached. | |
| Dr Slater was reminded in August 1991 of the importance of providing Ethics Committees with progress reports. | |
| In December 1992 Dr Slater was reminded of the constraints of the Human Tissue Act. | |
| In March 1995 there were further proposals by the joint team to enlarge the programme. The draft letter which would have been sent to local pathologists implied that the collection of brains from Coroners' cases was a new initiative. | |
| Following advice that brains from Coroners' cases would require consent of the relatives, Professor Deakin requested a meeting with Mr Gorodkin. | |
| No copies of progress reports to Ethics Committees or LRECs have been provided by the research team or can be found in the Salford and North Manchester Ethics Committees records. | |
References |
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| 1 Data
in
the
joint
programme
brain
books. 2 Extract from fax dated 28 March 1995. 3 Transcript of fax dated 4 April 1995. |
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