A service user's story: advocating for better mental health care
Advance Statements for Black African and Caribbean (AdStAC) is a research project working with collaborates with Black (and mixed with Black heritage) service users previously detained under the Mental Health Act, their carers, and mental health staff to co-produce resources for advance choice documents (ACDs). An ACD allows service users to specify their treatment preferences for future crises, informing professionals of their wishes. The new Mental Health Bill 2024, which was introduced to parliament earlier this month, will help formalise the use of ACDs in UK services.
In part two of this three-part blog, an anonymous service user reflects on their personal journey with the AdStAC project and the importance of having a say in their mental health care decisions.
Black and ethnic minorities are three times more likely to be sectioned, which leads to some much bigger questions, both personally and for the wider demographic: "Should I have been sectioned?", "Was the traumatic experience of having my liberty removed avoidable?"
When I was first approached to take part in the AdStAC project, it felt as though there were a lot of forms to be filled out and consent forms to sign. I realised this was for the safety and precaution of all involved, though it made me wonder whether this was an indication of things to come.
The social worker I was connected with was initially nervous and I felt this energy from her; I believe it was because she was newly qualified and perhaps because we met at my home. As time progressed and we began to fill out the ACD it became an easier process. It was a detailed form, however, I do not feel the questions were geared towards persons of a black and ethnic minority backgrounds. There weren’t many questions around spirituality, preference in medication, and staff representation.
As a staff member for the mental health charity, Mind, I know there are services in the community which can support people in recovery. With assistance from my GP and holistic intervention there may have been a chance for a much speedier recovery. This angered me to think about. I also experienced the use of force to get me to take medication I did not wish to take. To think that my life may not have had to have been so badly interrupted was a distressing thought. The treatment and dismissiveness of the staff at the hospital is despicable to me, they refused to give me what I requested in terms of knowledge and a conversation about what medication was being used on me. It felt like an assault.
The creation of the ACD did bring up horrible memories and I am lucky to have family to discuss these difficult emotions. I am now looking to the future and hoping that these ACDs will be a pathway to a much fairer implementation of treatment for Black and ethnic minorities.
I can say from first-hand experience that there is absolutely stigma, misjudgements, incorrect perceptions and a lack of understanding towards Black and ethnic minorities within the mental health system. Unless this is recorded, reviewed and challenged we will not see vital change. I am therefore happy to have created my ACD and feel that this is an important move to a more equal system. This brings the opportunity for people be seen for their value, like their skills and talents, away from the reinforcement of negative stereotypes.
The AdStAC team have now received further funding from Maudsley Charity to scale-up the use of ADCs within South London and Maudsley NHS Trust. Find out more
Read the series
Introduction: Empowering Black voices in mental health care: the advance choice journey
Part one: A clinician's perspective: enhancing trust and autonomy
Part three: Co-production in mental health care: Insights from an advance choice document facilitator
