Authors' reply

We have been pleasantly surprised by the positive tone of the responses to our editorial, as we had envisaged that it would attract criticism as well as support. However, this support has been very welcome, and we have been particularly impressed by the number of eloquent and authoritative responses from service users.

As Callard points out, the ability of service users to have a voice in academic and clinical journals is often missing, and the publication of several letters from service users in the British Journal of Psychiatry represents an important step in the right direction. We share her regret that the voice of service users, who have for years been making similar arguments to those in our editorial, but from a position of lived experience rather than scientific research, is often unheard or viewed as less legitimate. Jones, as one such service user voice, draws our attention to the often negative subjective effects that accompany antipsychotic medication, which is another important factor to consider in the cost–benefit profile. She shares experiences of service users being discharged from services if they choose not to take medication, which is a situation we have encountered many times, especially in recruiting for our recent clinical trial; this is clearly not to the benefit of anyone, and is only likely to result in crises that could have been avoided by a more collaborative approach to service provision. She also notes the lack of opportunities for guided discontinuation of antipsychotics; hopefully this is a situation that will change, given encouraging evidence from clinical trials that demonstrate that at least a proportion of people can be successful in their choices to discontinue medication. ¹

Campbell-Taylor provides a compelling argument in support of autonomy and the importance of the ability to make decisions about our life, regardless of whether others agree with those decisions or not; we would agree that service users should have the right to make such choices as long as there is no immediate risk of significant harm to self or others. However, even in such difficult circumstances, there may be other ways to manage risk, including alternative pharmacological approaches such as the use of benzodiazepines in order to reduce arousal, which can still accommodate peoples’ wishes and respect their autonomy.

Simmons suggests shared decision-making as a way forward in the promotion of choice, and we would agree that this approach has great potential to enhance the involvement of service users in decisions about their care. However, we would also suggest a note of caution, as there may be risks if this is delivered in isolation from the system that service users have to negotiate, given that the wider cultural context within services may discourage autonomy and involve coercion; indeed, as Hamann and colleagues reported, ² service users who received the shared decision-making intervention ‘were perceived as more “difficult” by their psychiatrists’. Thus, interventions should also aim to change the wider service context.

Francey et al discuss the relevance of a staging approach to the issues of choice regarding antipsychotics, which may certainly influence the relative cost–benefit profiles for service users at a particular phase of their mental health problems. However, we consider the issue of informed choice to be important regardless of whether it is an early phase or a more long-term condition. They also discuss their innovative clinical trial, which is a welcome development that will undoubtedly inform the evidence base regarding the possible costs and benefits of alternatives in comparison with antipsychotic medication, especially in first-episode psychosis, which is sorely needed. ³

Finally, Lobban asks for a strategy for translating the emerging evidence into changes to routine practice, which we can only endorse. It can be hoped that the increasing influence of recommendations such as those contained in the National Institute for Health and Clinical Excellence guidelines, ⁴ in combination with an associated programme of audit and incentives to perform in accordance with them, will promote such collaborative evidence-based practice. Similarly, we would hope that widespread provision of such information for service users and carers will help them in demanding change and ushering in genuinely collaborative care that embraces patient choice.