Speaking from experience: shaping the Mental Health Act Review
By Dr Sarah Markham
As someone with years of experience of being detained and/or restricted under various sections of the Mental Health Act (MHA), Theresa May’s commitment to address ‘the burning injustice of mental illness’ was very welcome news. The MHA Review is being chaired by Prof Sir Simon Wessely who has been very forthright in his criticism of the mental health care system, stating that the current environment “could hardly be designed worse” to assist recovery.
The Interim Report of the Review was published in May, drawing evidence from national service user and carer surveys, focus groups, stakeholder workshops, and a call for evidence together with wider discussions with organisations and professionals. The report doesn’t hold back in stating the extent of the suffering experienced by people detained by mental health under the MHA.
Prof Sir Simon Wessely has been very forthright in his criticism of the mental health care system, stating that the current environment “could hardly be designed worse” to assist recovery
I was first detained under the MHA after experiencing a prolonged period of depression and persistent failure to receive appropriate treatment and support from primary healthcare services. This ultimately led to me becoming overwhelmed by intense suicidal ideation and making a suicide attempt. This left me with a shattered jaw and facial bones and in need of immediate surgery.
Once detained in a secure hospital in Sussex I was dismayed to find myself not in the caring or supportive environment I had hoped for and needed, but a very rigid and coercive one. My fellow patients and I were treated predominately as risk entities, and our illnesses and symptoms regarded as problems to eliminate by the imposition of restrictions, not psychiatric conditions in need of compassionate and medically informed treatment. It was, in short, an appalling experience.
[We] were treated as risk entities, and our illnesses and symptoms regarded as problems to eliminate by the imposition of restrictions, not psychiatric conditions in need of compassionate treatment.
My salvation came in the form of an opportunity to become the ward’s first patient representative in the hospital’s secure recovery steering group. Thanks to the group’s lead, I was allowed to develop my role in accordance with my abilities. The consequent boost to my self-esteem and sense of empowerment was the trigger I needed to recover, and I have never looked back since.
Sir Simon has committed to patients being at the heart of the review and the Service User and Carer Group is part of the actualisation of this promise. I applied to be a member and hand on heart, I can truly say that no application has meant more to me. The group is composed of individuals who are or have previously been detained under the MHA, or have experience caring for an individual who has been. Our role, from the first meeting in February, has been to provide perspectives on the MHA informed by our diverse lived experience, together with reflections on the experiential knowledge we have gained through contact with other service users and carers.
Sir Simon committed to patients being at the heart of the review and the Service User and Carer Group is part of the actualisation of this promise
At monthly meetings we have discussed key aspects of the MHA and its implementation, such as the effects on patient autonomy and the extent to which carers are able to play a consensual part in their loved one’s care and treatment. At each stage the Department of Health and Social Care (DHSC) secretariat for the Independent Review have encouraged us not merely to voice our opinions and concerns, but also to put forward questions and requests for further data, information and research. What stands out regarding this involvement group compared to other instances of Patient and Public Involvement I have experienced is the extent to which we have been given the opportunity to voice, discuss, explore and contribute what we believe is of real importance to the review.
I can speak only with admiration for the eloquent and unflinchingly open testimonies of my fellow group members and of their determination, which I share, to do our best to contribute to positive change in the legislation. Given that the MHA can impact patients to the extent of depriving them of their freedom and qualifying of some of their rights under the Human Rights Act (HRA) for significant periods of time, it is essential that the service user and carer voice is heard and informs every aspect of the review and final recommendations.
What stands out regarding this group compared to others is the extent to which we have been given the opportunity to voice, discuss, explore and contribute what we believe is of real importance to the review
Some mental health and service user organisations have been critical of the interim report, questioning the scope given to people to ‘express more fundamental views about the extent of change needed’. As a member of the Independent Review’s Service User and Carer Group, I can report that the DHSC have worked very hard to encourage contributions from those affected directly and indirectly by the MHA. We are all committed to achieving an objective and thorough review. This can be seen in the interim report which strikes an adaptive balance between long-term future aspirations e.g. incorporating aspects of the Convention on the Rights of Persons with Disabilities into mental health legislation, and what is feasible to achieve in the short term.
My hope is that all mental health trusts will take a cue from the Interim Report and seriously consider how their services are implemented. The interim report recognises that “the inherent power imbalance means detained patients are vulnerable to potential coercive mistreatment, abuse and deprivation of human rights leading to physical and psychological harm”, and it is therefore imperative that mental health services put the report to practical use and, where necessary, implement robust improvements to the care and treatment they provide.
This is a longer version of a piece that was originally published on BMJ Opinion, available here
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