Posted on: 8 January 2019
Sandra Jayacodi, a Trust service user said working on projects to improve services turned her life around, after she was first diagnosed with mental health problems.
“When I thought my world was about to close in on me, I saw hope when I started to involve myself in quality improvement (QI) work on mental health. As a service user involved in various QI projects, policy making around mental health helped me find meaning in life,” she said.
She was giving the keynote presentation on her recovery journey at the last annual International Society for Quality in Health Care (ISQua) conference, held in Kuala Lumpur.
Sandra had attended various courses at CNWL’s Recovery and Wellbeing College, which helped her to share her story at the event.
The mask
“You can’t tell how much suffering is on the face that is smiling,” said Sandra at the event.
She appeared to have it all. She’d gotten married, had a beautiful daughter, practiced as a solicitor and had set up her own law firm.
“I thought all was well but it was not. I was still wearing the mask. The mask covered what was going on in circles in my head over and over again, and when alone the pain was unbearable.”
Sandra was admitted to hospital for four months after being diagnosed with bipolar disorder and psychosis.
“Following my admission, I lost the will to live. I lost my law firm, I was divorced, I was made bankrupt, my house was repossessed, and my psychiatrist signed me off as unfit to work. At one point I was even made homeless because estate agents wouldn’t rent me properties because my credit rating was bad,” she said.
“Fortunately enough I had a good therapist who worked with me. After a year into therapy she recommended I volunteer and do some recovery and wellbeing courses, where I learnt about coproduction and patient involvement in research.
“After completing the course I put my name down to be involved in research work in CNWL. It was known as the CNWL Research Partnership Group then and it opened the door to my first involvement in a QI project – Shine (Improving physical health assessment for people with severe mental illness).”
‘Valuable resource’
It wasn’t easy at first, but Sandra’s involvement in improvement projects gave her confidence and eventually led to her first paid employment in nine years. She’s since travelled the world sharing her story at conferences and mental health hospitals, including in Malaysia, Singapore and Berlin. She is involved in many projects in the UK too.
“I learnt how to take care of my physical health. I learnt what QI methodology is, I learnt about process mapping (which she presented on too at the conference). I learnt to make suggestions and challenge the team if implementation didn’t take place. I was not afraid of being vocal,” she said.
Sandra urged health care professionals to involve patients in any work to improve services.
“We are a valuable resource that you should not let go to waste. Get us involved in your improvement work. Support us, guide us, train us, educate us. You understand us better. You may say ‘I’m not paid for this,’ and ‘I don’t have time’ but it’s easier for us to ask you to spend extra time with us because you know us.”
“When you learn from us, it builds our confidence. When you appreciate what we do, it keeps us motivated. When you publish what we’ve contributed it makes us proud,” she said.
Lucy Palmer, CNWL’s Head of Patient and Carer Involvement said: “Sandra shows what can be achieved when staff, service users and carers work in genuine partnership together. Sandra brings fantastic ideas to all the projects she’s involved in, ideas that staff probably wouldn’t have come up with on their own. There are many others like Sandra whose expertise can truly transform services and benefit patients, family and staff. At CNWL we’re encouraging and supporting QI teams to involve people with lived experience and we’re already seeing the benefits of this.”
ISQua was established in 1985 with a vision to promote quality and safety in health care through international co-operation and collaboration.
See Sandra’s full presentation below (starting from 16:55)