Whilst researchers are increasingly required to demonstrate patient or participant involvement in the design, implementation, and dissemination of their research, very often that involvement is lacking in continuity, is defined by the researchers themselves, and is subject to the criticism of being tokenistic. This paper discusses the role played by service users in advising on a longitudinal study of the health and social care needs of a cohort of homeless women in a major city in England. It explores the experience and impact of including service user advisors within research from the perspective of the advisors themselves and researchers. Although it was a steep learning process for all concerned, the advisors became a valued part of the research team and valued the experience themselves.
A Caucasian male in his early twenties suffering from treatment resistant schizophrenia was started on clozapine. After three days he developed tachycardia, a common side effect of clozapine induction. He had one temperature spike (38.9°C) on day ten after induction but remained clinically well. An ECG and blood tests were normal. Due to persistent tachycardia and an episode of collapse whilst seated on day 12, he was admitted to hospital for further investigation. A diagnosis of myocarditis was confirmed as a result of elevated cardiac enzyme levels and an echocardiogram. Following withdrawal of clozapine, supportive management, and initiation of cardiac medication, the patient made a successful recovery. He will be followed up with the cardiology team to ensure that his heart function returns to normal. Given the incidence of clozapine-induced myocarditis, the associated mortality risk, and diagnostic difficulties, this case raises questions about whether a formal system for identifying myocarditis should be adopted.
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