In the Autumn of 2017, Theresa May, the prime minister, announced an independent review of the Mental Health Act (MHA). The aim of the review is to make recommendations on improving legislation and practice around mental health detention. As someone with over 11 years of experience of being detained and/or restricted under various sections of the MHA, I welcomed Theresa May’s commitment to address “the burning injustice of mental illness.” The review is chaired by Simon Wessely, former president of the Royal College of Psychiatrists. Simon Wessely has been very forthright in his criticism of the mental health care system, stating that current environments “could hardly be designed worse” to assist recovery.

In May 2018 an interim report of the independent review was published. The evidence considered was drawn 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 under the MHA.

One of the commitments of the review was to involve patients. A service user and carer group has been set up to action this. I am a member of the group, which means a huge deal to me.The group is composed of individuals who are or have previously been detained under the MHA, or have experience of caring for an individual who has been. Our role is to provide our perspective on the MHA, informed by our diverse lived experience and experiential knowledge that we have gained through contact with other service users and carers.

At our monthly meetings we have discussed key aspects of the MHA and its implementation, such as the effect it has 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 every stage, the members of the Department for Health and Social Care secretariat assigned to work on the Independent Review with us have encouraged us to not merely voice our opinions and concerns, but also to put forward questions and requests for further data, information, and research to inform our contribution to the review. Between meetings, group members discuss issues and share information with each other.

What stands out about this involvement group compared to other instances of patient partnership involvement that 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. We have also been able to advise on the best means of engaging with our peers to ensure that the widest range of perspectives are considered by the review. Prior to the publication of the interim report in May, our main role was to help shape the review’s principles and emerging priorities. Now we are in the second phase of the review, we will be involved in working with specific topic groups, developing recommendations, and reviewing emerging recommendations from other groups who are supporting the review.

I have great 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 the impact that the MHA can have on patients, to the extent of depriving them of their freedom and influencing their human rights, for significant periods of time, it is essential that service users and carers are heard and inform every aspect of the review and final recommendations.

One of the challenges of engagement work is that its perception is subjective and a whole range of views on how successful it has been is important. Some mental health and service user organisations have been critical of the interim report. I can only speak from my perspective, but I feel confident and reassured that the Department for Health and Social Care have worked hard to encourage contributions from those affected directly and indirectly by the MHA. We are all committed to achieving the most objective and thorough review we can.

Sarah Markham is an academic mathematician and patient representative currently pursuing a second PhD in theoretical computer science. Twitter: @DrSMarkham

Competing interests: None declared.