What efforts are being made to ensure the 'once in a generation' review of the mental health act is shaped by people who have been detained in hospital themselves? Mental Health Today spoke to suicide survivor Steven Gilbert, the most senior member of the review team with declared lived experience, to find out.
Mental Health Today: A 'service user and carer survey' is available until February 28, as part of the Mental Health Act Review. How important is it to the review team that there is a significant response from individuals who have been sectioned and how much weight will they have in the review?
Steven Gilbert: It is hugely important to the review team that there is a significant response from individuals who have been affected by the Mental Health Act, either due to being detained, caring or supporting someone who has been detained or others who are keen to see change.
"If in five years’ time the review has led to a reduction in the number of people detained, for shorter time periods, with fewer people being re-detained, I will judge the review to have been a success."
We are fully focused on creating recommendations that will improve the outcomes for people detained, ensuring that the act is used only in those situations where it is absolutely necessary, and that it is used to deliver therapeutic treatment. Hearing the voices of people who have direct experience of the Act is essential to understanding what needs to change.
MHT: How many survey responses have you achieved so far and how many would you like to see by the deadline?
Steven Gilbert: The survey has received 1484 responses (1430 online and 53 paper). There is still a lot of work to do in the final week to ensure we reach as many people as possible. Our aim was to have to have at least 1,000 so we are pleased to have achieved this milestone. Of course we want to receive as many as possible, so if you are reading this and you haven’t responded please complete the survey. We want to hear from you.
- See also: Simon Wessely - 'This is a once in a generation opportunity to make mental health care civilised not coercive'.
MHT: What assurances can you give that the identities of respondents will be secure?
Steven Gilbert: All of the information people share with us in the survey is confidential and will not be linked to a person’s identity. The online software securely stores personal information and the survey responses are collated without a person’s name and email address. This means the data that will be analysed is anonymous. If anyone feels uncomfortable with including their name and/or email address but would like to complete the survey, they are able to skip this section and continue with the rest of the questions.
We have asked for some additional details such as people’s ethnicity, age and gender to help us identify any issues that may be impacting a particular group. This information will always tell us if we the survey is truly representative of the people who have been sectioned. However, people can also skip this section if they would prefer to do so.
"I want to see the disproportionate experiences and outcomes for BAME communities and specifically people of African Caribbean heritage or descent reduced."
MHT: How many people currently under section will have access to the survey?
Steven Gilbert: We have attempted to share the survey with as many survey user groups, health organisations and individuals as possible including those in secure care. A paper version of the survey can be posted to the review team at 39 Victoria Street, London, SW1H 0EU.
MHT: Many of us are excited by the prospect of the review - how quickly do you expect changes can be made though? In what year might the law or code change?
As a review team, we are excited for the opportunity to make recommendations for how the Mental Health Act can be changed and how associated practices and policies can be positively influenced. It’s hard to say at this stage, and depends on a number of factors. We’re keen to ensure the review produces recommendations that can be implemented quickly wherever possible. That said, this is a complex area and some changes may take time to prepare.
MHT: As the most senior member of the review team with declared lived experience, please sum up what would represent success for you, in terms of the spirit and practicalities of the new Act?
Steven Gilbert: As a Vice Chair to the review who has not only declared his personal living experience of a serious mental illness and detention under the Act, but who also has numerous family members who have been detained, this is an incredibly important piece of work. It is vital that we don’t just talk. We need to grasp this opportunity and seek to realise real improvements in the experiences and outcomes for people.
In terms of what success looks like - that is an interesting question. Our role is to make recommendations, the adoption of those is for the government to decide. Ultimately success is an individual experience, for each person who comes into contact with the Act. There are so many factors that influence the experience and outcomes a person has. We are seeking to address as many of these as possible.
If in five years’ time the review has led to a reduction in the number of people detained, for shorter time periods, with fewer people being re-detained, I will judge the review to have been a success. I would also want to see the disproportionate experiences and outcomes for BAME communities and specifically people of African Caribbean heritage or descent reduced.
We’re expecting to publish our interim report around Easter, which will identify priorities for the review’s work.
Please do get involved and take this opportunity to share your views with us. On a personal level it is important that we have as strong a voice as possible from people who are central to the Mental Health Act, who have been there and who know exactly how it feels to go through it. For anyone who has already completed the survey I want to extend a heart-felt thank you. I appreciate that it is not always easy to share, what can be very difficult experiences. So thank you.
Steven Gilbert lives with bipolar and PTSD and is Vice Chair of the Mental Health Act review team.
How does this story make you feel? Join our Twitter chat this Wednesday 21 February at 12pm using #MHTchat to share your views on how cultural awareness can be improved in mental health care.