Sarah Markham: Patients have knowledge and agency which is essential to their recovery

The independent review of the Mental Health Act 2018 has given patients and carers the opportunity to share their personal experiences and views of detention under the act. These accounts of what it is like to be detained or have a loved one detained, have helped to raise awareness of the need to significantly improve the quality of mental health services and the ways in which individual patients and their “carers” (family and close friends) are treated. The final report says “We must improve choice and decision making, both prior to and within a setting of compulsion.” By acknowledging and centring the knowledge and concerns of patients and carers, rather than ignoring them, the review has focused on formulating pragmatic recommendations which will best support the wishes, preferences, and wellbeing of those that the Mental Health Act is supposed to serve.

One of the findings of the initial data gathering part of the review was the struggle that patients detained under the Mental Health Act have in terms of self-determination and asserting their choice within mental health settings. The review revealed that both patients and carers may often find themselves at the painful end of damaging epistemic relations with clinicians and other mental health staff. The review uses the phrase “epistemic injustice” to describe the feelings that patients described of having “their capacity as a person with knowledge wrongfully denied.” Patients described how their experiential knowledge of which treatments work best for them can be disregarded without explanation or justification by clinicians, and far too often patients who disagree with their treating team may be labelled by default as “lacking insight.” If a patient or a carer raises a concern, they can often find themselves facing a blank wall of denial from the service provider and practitioners concerned.

Unfortunately it is only too evident that the organisational norm of credibility within mental healthcare services is biased against patients and carers. This means that regardless of the conscientiousness of individual practitioners in giving due regard to their patients’ views and requests, the wider services may function to suppress patient agency and increase the epistemic marginalization of the patient body.

One way of challenging structural epistemic injustice is to examine the assumptions underlying legislation at the state level, together with the implications for clinical practice and service provision. The existence of flawed assumptions within legislation may legitimise, normalise and propagate these assumptions throughout the system and beyond. This is what may have happened over the last decade since the 2007 amendment of the Mental Health Act, which led to an increase in disproportionately risk averse decision making within mental health services.

It is important to remember that patients, even when oppressed by the disabling effects of a mental health condition have knowledge and agency which is essential to their recovery. Disregarding or suppressing this means of personal recovery with practices or rules which seek to eliminate all possibility of risk, may erode patients’ sense of self and potential to achieve meaningful outcomes for themselves.

The individual-centred practice of epistemic justice means disregarding one’s subjective biases in order to evaluate the value of information offered by others. While it would hopefully improve patient experience and outcomes to some extent if clinicians and multi disciplinary teams could adopt such practice, this fails to challenge the underlying organisational and legislative structures that generate and propagate epistemic disregard towards patients. What is required, in conjunction with improvements in individual clinicians’ epistemic practice, is more far-reaching transformative strategies which will challenge these structures.

The review of the Mental Health Act by its very nature has highlighted the role of the law and lawmakers in legitimizing and perpetuating potentially damaging and dysfunctional epistemic norms. This was recognised throughout the review and especially by members of the Service User and Carer Group. A concerted effort was made by those members who had been most exposed to epistemic contempt, for this to be placed within the recommended principles of the Mental Health Act. Although this was not ultimately achieved (principally because there was a concern within the review that practitioners would not understand what epistemic injustice meant) the new principles proposed by the review include recognition of the need to “enable and support the person to express their will and preferences, and to ensure that their will and preferences are given proper weight in decision-making.” Many of the individual recommendations of the review provide further weight to patient choice and autonomy, for instance the recommendations for statutory advance choice documents (ACDs) and collaborative risk assessment.

Another of the most radical aspects of the final report is the candid and clear recognition of the disproportionate risk aversion which pervades mental health service implementation and individual practitioner practice. Patient needs may be discounted unless the individual patient flags these up as a risk to themselves or others. Money follows risk within mental health services, not in the sense of providing quality care and treatment, but in the sense of resourcing secure services, which far too often prioritise restriction over the clinical wellbeing of patients. There needs to be a shift away from defensive practice and blanket restrictions towards clinical treatment which best serves the individual patient. This has been rightly recognised by the review. The final report recommends a systemic inter-agency approach to resolve defensive practice regarding risk and restriction, extending beyond mental health services.When I first became involved in the review, I had no idea of how firmly focused on improving patients’ experience of detention under the act it would prove to be. As someone with extensive experience of mental health services and the MHA, I would like to recommend strongly that the UK government supports the excellent recommendations of the MHA Review. They are all very much needed.

Sarah Markham is an academic mathematician and patient representative currently pursuing a second PhD in theoretical computer science. She is a member of the BMJ Patient Advisory Panel.

Twitter: @DrSMarkham

Competing interests: None declared