Research ethics approval and discrimination.

Abstract

We read with envy Galappathie et al’s study1 of detained patients’ awareness of the mental health review tribunal (MHRT). We applaud their decision to regard their study as part of service evaluation rather than as a research project requiring National Research Ethics Service Committee (NRESC) approval. We applied for NRESC approval for a study asking patients detained under Section 2 or Section 3 of the Mental Health Act 1983 about their views on the chances of the MHRT rescinding their detention if they appealed. The crucial question was ‘What do you think are the chances that you will be discharged by the Tribunal if you appeal?’ The NRESC which reviewed the application did not have a mental health patients’ representative, carers’ representative or mental health professional as its member. Therefore, it sought expert opinion from a retired clinical psychologist. The NRESC ruled that ‘the study should not be done in the acute phase of treatment when participants are detained and it would be more appropriate once they have been discharged. This would remove concerns about the ability of the participants to give informed consent whilst under detention and in a vulnerable condition’. We appealed against the decision and our application was referred to another NRESC which also did not have a mental health patients’ representative or carers’ representative, but had a psychologist as a member. We attended the review and explained that we endeavoured to assess detained patients’ views and that post-discharge retrospective assessment would be futile. We argued that the first principle of the Mental Capacity Act 2005 is the presumption of capacity. The General Medical Council guidance also states that one must not assume that a patient lacks capacity to make a decision solely because of their medical condition, including mental illness. We confirmed that patients who did not have capacity to decide whether to take part in the study will not be offered the opportunity to take part. This second NRESC agreed with the first one for the same reasons, that is, detained patients don’t have capacity to decide whether to take part in the study. This is an example of ignorance and consequent stigmatising attitudes held by those in authority, resulting in discrimination against mental health patients, carers and professionals. Members of NRESCs believing that those who are mentally ill lack the capacity to make simple decisions could significantly hamper research into mental illness and perpetuate the myth that psychiatry is the most unscientific medical specialty. Mental health professionals and patient groups may share part of the blame by not representing themselves on NRESCs.