I was introduced to working in public and patient involvement (PPI) at the University of Manchester in 2011. Over the last 6 years I have had many changes in my own mental health and overall wellbeing. I wanted to get involved because my mother has been experiencing severe mental illness since I was a child and became recognised as a carer throughout most of my life. As a service user and carer I went through years of difficulties of accessing work and training and becoming involved in research gave me a step up into work experience alongside studying part time for my degree. These life experiences qualified and empowered me towards continuing my dedication and time to become a resident PPI contributor. My work experience at the university has increased my self-esteem, broadened my social skills and given me more professional experiences. The team at the department of primary care have been supportive and helped encourage me to be involved more in the department. I have been proactive and actively requested involvement in reviewing and offering my feedback on various aspects of the projects. One of my most memorable projects began in 2013, working on the advisory panel for the ClinTouch technology app to help people manage their long term mental health challenges. It was a big confidence boost to feel valued as part of the team. I was able to reflect on my experiences of mental health challenges and call upon the times when I was a carer to someone with severe mental illness. I could finally apply my experiences in an altruistic manner for wider benefit.
Research works more effectively with patients as partners. As a PPI professional and effectively working alongside researchers, I can now assist with the collaborative working between patients and health research and offer a unique perspective on how projects can be improved and developed. I am also interested to help broaden the range of people that want to participate in health research, especially those who are in hard to reach communities and have anxiety issues with travelling to the university. I still continue to challenge my own health issues on a daily basis due to my own diagnosis of PTSD (post traumatic stress disorder) and mental capacity to work, so can empathise with many people attempting to make the step into research opportunities. My latest involvement in DEPEND, designed to improve data collection and usefulness, has given me the opportunity of more meaningful ways of becoming involved in community mental health feedback and review specific parts of the work streams.
As a team, we have had to deal with bereavement with loss of one of my colleagues, Neal Sinclair. It was wonderful working with him and he will be missed. It also makes you realise how precious life is and to make the most of the good days when you are living with mental illness. It also highlighted how prestigious I feel my role at the university has become and feel very proud of this! It has also raised the important issue of making sure we get support in our work if we are managing other long term help challenges as sometimes we may disclose and access difficult memories and experiences that we have faced as part of our work. I have been invited to feedback on this issue to help protect PPI members and make them feel supported in their role whilst speaking up in small groups of new people. There is a great opportunity for the research time to continue their professionalism and to recognise the needs of the individual members of PPI groups. This may add value to PPI involvement and attract new individuals who would of otherwise have not considered being involved in research. I have always had the mindset that if would help me network, help reduce my social anxiety and reflect positively on my mental health challenges. I feel I can work towards managing my illness rather than it dictating my life.
For more on ClinTouch advisory groups, see information follow: