"My involvement has been a valuable part of my healing process. I have had insights into what happened to me; I have had opportunities to talk about my experiences and to be heard and also to feel part of a community of people who can bring about change."
Joan has previously used Sussex Partnership services and is now a service-user representative on the Brighton and Hove Patient and Carer Engagement Steering Group.’
"When I was asked to be the focus of one of this series of articles, I was somewhat reluctant, as I have not fully ‘come out’ about my mental health issues. Yet here I am writing this article. I don’t feel fully confident about discussing my mental health openly in print or online and being identifiable to everyone, hence the photo.
"What I have learned is that my lack of full disclosure about my mental health issues need not stop me from getting involved in the work of Sussex Partnership and that I can still make my contribution to improving services and to the debate around issues relating to mental health.
"Three years ago, I found myself (for the first time in my 60 plus years) in an acute hospital ward, via A&E, because of my extreme thoughts and behaviours. The majority of staff I met were caring and compassionate, wanting to do their best for me. Some aspects of my care I would rate as 11/10, (such as the attention I received in A&E), but other areas were somewhat lacking, (such as the opportunity to talk about my problems in hospital). Within a short period of time I was out of hospital and being supported within the community. I recognised that I needed help in making sense of what had happened to me and to discuss ways of avoiding a similar breakdown in future. I received some very useful advice and help in devising strategies for monitoring and staying well, but I was not able to access in the NHS the individual therapy I knew I needed to fully understand what had happened. I am grateful that I could afford to pay privately for this.
"When I was well enough I got angry about those aspects of my care which I felt had not helped me, primarily lack of opportunities to talk both in hospital and in the community. I was angry not only on my own behalf, but also on behalf of others, who for whatever reason, were not in a position to have their voices heard. I went to open meetings, consultation meetings, etc., run by Sussex Partnership determined to raise those issues that I felt so passionately about. Expressing my feelings was a big emotional release for me, however, as a friend pointed out, this wasn’t the best use of my energy if what I wanted was change. I needed to co-operate with those who worked for the Trust, to be constructive rather than just critical. This was my ‘lightbulb’ moment.
"I am currently a service-user representative on the Brighton and Hove Patient and Carer Engagement Steering Group which meets on a regular basis, serving the secondary care adult mental health services, including community and in-patient services. The intention is for staff to work in partnership with service users and carers and together improve care and build the services to meet community needs. I feel confident in proposing items for the agenda, and also in joining in discussions and decision-making. My comments are welcomed and encouraged. In my opinion this group improves the experiences of those of us with lived experience and our carers. I feel that in contributing to this group I can make a difference.
"I am becoming increasingly impressed by the People Participation team, with the efforts they are making to gather the views of those of us who have experienced the services in some capacity and to involve us in the work of the Trust. I feel heard when I attend meetings run by their staff. There are quite a few opportunities available through them in which we service users can take part (such as being on the interviewing panel for new staff, taking part in inspections, etc.). These sorts of activities may seem a bit daunting for some of us, but the team offer workshops and training so that we can gain the knowledge and expertise necessary. I hope to take part in their training in the near future.
"I do take every opportunity I can to take part in consultations regarding future developments in the Trust. I have felt fully involved in some consultations, in others I have felt very restricted in what I am asked to comment on and wonder if anything I have said will result in change. However I am aware that this is one of those issues that is being addressed throughout the Trust.
"I am hopeful for the future of Sussex Partnership but I am realistic about my expectations. From my experience things have improved considerably in the last three years, because of the commitment of staff throughout the organisation and through service user and carer involvement, which is being encouraged and valued. I am realistic in acknowledging that not everything I would like to see happen will, primarily because of what I see as a longstanding national underfunding of mental health services. Maybe this is my next venture…
"Fingers crossed, touch wood, etc., I will not have used Sussex Partnership services for 3 years come the end of 2018. If so, I will stop much of my local involvement because my experiences of the services will not be recent and I will happily make way for those service users and carers who are up to date with what is going on. This sort of involvement is not for everyone but I would like to end as I began by saying that there of ways of participating whereby you do not have to reveal too much about yourself and yet you can still make a difference to what happens within the Sussex Partnership Trust.
"My involvement has been a valuable part of my healing process. I have had insights into what happened to me; I have had opportunities to talk about my experiences and to be heard and also to feel part of a community of people who can bring about change for the better. I still get angry and frustrated at times and I express this, I feel vulnerable at times and I am learning that it is good to let others know when I am feeling this, and, should things feel overwhelming and I begin to feel stressed, then I take a step back for a while and get on with the other parts of my life. I have felt very supported by those staff with whom I have worked. My involvement has been a positive part of my becoming whole again and in the process I hope I have improved things for others who, like me, have issues with their mental health."