23 - Patients’ and carers’ perspectives on ECT

Summary

Patients’ perspectives

The NICE technology appraisal on ECT (2003) that preceded the last edition of The ECT Handbook was informed by two systematic reviews. The group tasked with assessing evidence for efficacy (UK ECT Review Group, 2003) concluded that there was evidence that ECT was an effective treatment for depressive disorders. There was also an review of patients’ perspectives on ECT – specifically their views on the benefits of treatment and adverse effects on memory – conducted by the Service User Research Enterprise (SURE) at the Institute of Psychiatry (Rose et al, 2003). The NICE Committee's decision of recommending ECT only when illness was life-threatening or resistant to other treatments was significantly influenced by service users’ views (National Institute for Clinical Excellence, 2003: para. 4.3.8).

Rose et al (2003) reviewed 26 studies carried out by clinicians and 9 studies led by patients or undertaken with their collaboration. It was noted that clinicians asked fewer questions and their research had less complex schedules and was undertaken shortly after treatment. Clinician-led studies were much more likely to find that patients had found ECT helpful (Fig. 23.1). Studies that were undertaken in hospital settings by the treating doctor were more likely to report positive views of ECT. Of the 35 studies, 20 considered memory loss. Reported rates of memory impairment were 29–55%. There was no difference between patient- and clinician-led studies in the frequency of memory complaints.

The service user perspective was again explored in two further publications from the SURE group (Philpot et al, 2004; Rose et al, 2004). In the first of these (Philpot et al 2004), a patient-designed 20-item questionnaire was posted to the home addresses of 108 patients 6 weeks after they had completed a course of bilateral ECT. Of the 43 respondents who answered this question, 41% of all forms were returned, although not all were fully completed: 19 patients would have ECT again, 7 would ‘possibly’ and 17 would ‘never have ECT again’. Patients who had found ECT helpful and those who had received previous courses were more likely to accept the idea of future ECT; out of 19 patients having their first course of ECT, only 4 said they would definitely have ECT again. Thirteen patients felt they had no option to refuse ECT, of which one patient was detained and treated under a section of the Mental Health Act 1983.