While I was looking for information about the use of ECT in Scotland I came across the incredibly sad story of Mr G, as told by the Mental Welfare Commission in their report, Not my problem: the care and treatment of Mr G.
Mr G had ECT as a young man in the late 1960s. Some forty years later he started to behave bizarrely and show signs of confusion. He was in fact suffering from fronto-temporal dementia, but none of the psychiatrists he saw over the next few years spotted this, even when he was incontinent, wandering, suffering from memory problems and eating sugar from the sugar bowl (apparently people with fronto-temporal dementia typically crave sugar). Instead they gave him a variety of diagnoses, including: “schizoid personality traits… depression and anxiety… dependent personality disorder… anxious personality disorder.. exhibitionism… avoidant personality disorder… inadequate personality“. Early on, a project manager at a hostel where Mr G was staying suggested that he was suffering from dementia, but this suggestion was dismissed by doctors on the basis of his score on the mini mental state examination (MMSE). As Mr G’s behaviour became more and more bizarre and on occasion violent, he had run-ins with the police and ended up in prison. Eventually, in 2004, the prison health services called in the Mental Welfare Commission as they believed Mr G was mentally ill and had been rejected by the psychiatric services. A doctor from the Mental Welfare Commission (by now we are on Dr10) decided that he might be suffering from dementia, although he could not rule out a depressive illness. Mr G was admitted to the state hospital and treated with anti-depressants and ECT. “Neither produced benefit”, and within 18 months Mr G had died.
The Mental Welfare Commission’s conclusions stated that:
“There was evidence of too much reliance on screening tests for dementia that have limited reliability and validity”
“There was evidence that the diagnostic process was based on inaccurate and unsubstantiated information and assumptions that lacked corrobative evidence from a careful analysis of previous case records and/or information from informants.”
Was there, I wonder, any connection between Mr G’s dementia and the ECT he underwent some forty years earlier? The risk factors for fronto-temporal dementia remain unknown, although one recent study suggested an increased risk in people who have had a head injury. However, fronto-temporal dementia is sometimes associated with Amyotrophic Lateral Sclerosis (AML or Lou Gehrig’s Disease) and there have been suggestions that people who are exposed to electric shocks have an increased risk of AML. In 2001 a report by the National Radiological Protection Board’s Advisory Group on Non-Ionising Radiation, chaired by Sir Richard Doll, recommended that:
“Case-control studies are, however, appropriate for investigating the aetiology of amyoptrophic lateral sclerosis and, in view of the rarity of the disease, are generally preferred to cohort studies. A large-scale case-control study might, therefore, be profitably undertaken in which special enquiries were made about:
employment in electrical occupations, with special reference to the occurrence of severe electric shocks; medical treatment with electroconvulsive therapy that could be confirmed from hospital records; exposure to transcranial magnetic stimulation… “
The Mental Welfare Commission’s report into the care and treatment of Mr G criticized psychiatrists for relying too heavily on the MMSE without understanding its limitations. And yet the MMSE is often used to test the cognitive function of people undergoing ECT. The investigation also found that Mr G’s history “became distorted to become consistent with the accepted diagnosis of personality disorder” and recommended that “an individual’s history and chronology of events are checked for accuracy with the individual or, where possible a reliable informant”. However, correcting mistakes in your medical records is no straightforward matter, as this guidance from the Information Commissioner’s Office explains:
“An area of particular sensitivity is medical opinion, where doctors routinely record their opinions about possible diagnoses. It is often impossible to conclude with certainty, perhaps until time has passed or tests have been done, whether a patient is suffering from a particular condition. An initial diagnosis (or informed opinion) may prove to be incorrect after more extensive examination or further tests. Individuals sometimes want the initial diagnosis to be deleted on the grounds that it was, or proved to be, inaccurate. However, if the patient’s records accurately reflect the doctor’s diagnosis at the time, the records are not inaccurate, because they accurately reflect a particular doctor’s opinion at a particular time. Moreover, the record of the doctor’s initial diagnosis may help those treating the patient later….”
The first recommendation made by the Mental Welfare Commission’s report was that: “The Medical Directors of the Health Boards must ensure that all psychiatrists dealing with patients over the age of 18 are competent in the assessment and diagnosis of the full range of dementias they may encounter“, a requirement which is surely not unreasonable given the length of the medical education undergone by psychiatrists.