Balancing choice & autonomy: modernising the Mental Health Act

With one in four people experiencing a mental health disorder at some time in their life, the MHA has the potential to touch every family in the country.

Concerns about rising use of detention and protecting human rights within the Act have led to calls for its reform for many years. Reports on the rising number of detentions and the disproportionate use of detention on individuals from Black and other minority ethnic groups led to NHS Mental Health Taskforce recommending a review of the MHA.

In October 2017, then-Prime Minister Theresa May announced an Independent Review of the Mental Health Act (IRMHA), chaired by King’s Regius Professor of Psychiatry Sir Simon Wessely. King’s research underpinned and fundamentally shaped the review, resulting in specific recommendations to enable patients to plan for their own care and treatment.

Detention & mental capacity

When detained compulsorily under the Act, basic personal liberties are removed, and it can invoke enormous emotional strain on patients and their families. Between 2019-2020, there were 50,893 detentions recorded. The number is likely to be higher than this as not all detentions are documented. During this same period, Black people were more than four times as likely as White people to be detained.

To better understand the experiences of those detained, King’s researchers carried out detailed assessments of mental capacity and clinical characteristics in patients in 250 consecutive admissions to psychiatric hospital under the MHA. The research found that 86% of those formally detained for compulsory treatment were not able to make and communicate decisions about treatment i.e they lacked mental capacity.

60% of those patients who chose to be admitted voluntarily lacked the proper capacity to make decisions about their treatment and care. For voluntary patients, those who lacked the capacity to make these decisions were more likely to experience feelings of having been coerced and to refuse treatment.

These findings highlighted the clear failure of the MHA to give people a say in what happens to them during detention and the negative impacts this has for the person and the effectiveness of treatment.

Advance Care Planning

An Advance Decision is a statement of instructions about what medical and healthcare treatment you want to refuse in the future, in case you lose the capacity to make these decisions. These are sometimes known as “advance directives” and they enable people to make these decisions during times when they feel better able to plan for their care. However, even when patients have outlined advance directives about their care in the event of detention, the MHA did not require that these to be acted upon. This essentially bypasses the one route to which patients may be more empowered in the decisions about their treatment.

A major challenge in the development of effective models of advance decision-making is for those patients who have fluctuating mental capacity, such as in bipolar disorder. In collaboration with the charity Bipolar UK, King’s researchers surveyed service users on their own experiences and perceptions of ADM to gain insight into how to develop better models of ADM . 88% of those surveyed expressed a desire to be involved in the planning of their treatment in the event that they lose the capacity to make decisions, but only 36% had done so.

In 2017 King’s adopted a collaborative approach with service users, clinicians, policy makers and third sector organisations to form its Mental Health and Justice (MHJ) research project, recognising the importance of including all voices. The MHJ project was awarded £2.5 million by the Wellcome Trust. Building on King’s research from the early 2000s, the MHJ project developed a new model of ADM grounded in the lived experience of fluctuating mental capacity as well as in psychiatry, ethics and law.

In collaboration with service users, friends and family of service users, legal experts, and clinicians, the model was then developed into the Preferences and Advance decisions for Crisis and Treatment (PACT) document and guidance materials fit for implementation studies in clinical services.

The Review and Recommendations

Professor Sir Simon Wessely was asked to chair the IRMHA on the basis of the breadth and depth of his mental health research. He considered findings of King’s researchers working in collaboration with charities and service users, and these fundamentally shaped the IRMHA, shifting the recommendations of the IRMHA towards recognising mental capacity and patient involvement in care.

The Review was concluded and published its final report in December 2018. The Government committed to introduce new legislation to reform the MHA. It also immediately accepted two of the Review’s recommendations, both of which related to advance planning:

• Persons detained under the MHA would be able to nominate a person of their choice to make decisions about their care (replacing previous legislation that this role automatically fell to the nearest relative)
• Statutory ACDs would be introduced to allow patients to declare how they would like to be cared for and treated prior to experiencing a period of mental ill health and incapacity.

King’s researchers then worked with the Government to translate the recommendations into legislation. The recommendations were published in January 2021 in a White Paper (following a delay due to COVID-19). This involved organising evidence sessions for parliamentarians and senior civil servants, as well as directly engaging the civil servants responsible for drafting the White Paper.

A partnership with the charity Bipolar UK has made these new forms of autonomy freely available on its website, and a partnership with a service user artist has led to an exhibition of new work with autonomy at its heart.

Early implementation at South London and Maudsley NHS Foundation Trust enables people with serious mental illnesses to exercise new forms of autonomy before, during and after detention under the MHA. The initiative has allowed for King’s researchers to evaluate the success of implementation, and to provide a model for other trusts in the future.

In May 2022, the UK government announced details of a new draft mental health bill, due to be published later in the year.