To get you thinking deeply about quality improvement in health care, we want to introduce you to Sandra Jayacodi. Sandra shares her own personal health care journey and gives fascinating insights into her struggles with mental health and how she came to manage them. >> I'm here as a patient, a patient on her recovery journey. I will not be delivering facts and figures, run charts and graphs, sure you would have had enough of that already. I want to tell you a story, my story, a story which many patients and public will also share. A story that I hope will open your eyes to the plights of people like me, people with a mental health condition. Let me give you a bit of my background. I was born in this vibrant country called Malaysia, a country where I spent the best part of my life. From walking barefoot in the streets and crossing rivers with school bags over my head, building tree houses and falling down 100 times, to climbing trees, which I still do, but not taking the risks of hanging upside down anymore. My sisters identify me as someone who refuses to grow up. I still feel there's this little girl trapped in this body. I was a natural leader even when I was a child. If I think back, I could con any of my friends to doing anything I want. Childhood was the best days of my life. However, even then I was wearing a mask. There was sorrow behind that happiness, but no one knew. I left Malaysia when I was 30 for the UK to pursue further studies. On completing my studies, I settled in the UK, got married, had a child and set up a law firm. Life was good, so I thought, but that wasn't the case. There was the mask behind that face. >> In this next part of Sandra's story, you'll hear about quality improvement and Sandra's recovery, a road less traveled. Quality improvement, QI, for many is a means to an end, a way of making patients better, improving their care, reducing waiting times. But in mental health sectors, quality improvement is almost nonexistent when compared to physical health services. From my own personal experience, quality improvement is about recovery. Being a service user and a member of a quality improvement project in a mental health service has helped me find meaning in life. Our physical and mental health are inextricably linked, and people who live with a long-term physical condition, such as cancer, diabetes, arthritis, or asthma, are also likely to experience mental ill health, such as depression and anxiety. Long term conditions can't be cured, only managed. And they come with the risk of social isolation, low self esteem, stigma and discrimination. This can easily give way to a mental health condition if support isn't available. As the patient, you want to receive the same level of care for both physical and mental health. >> So what happened to Sandra? How did her patient story begin? >> Since 2000, I have been suffering from depression, stress and anxiety. It was a continuous battle, a battle I was willing to fight on my own for fear of the associated stigma. When you have been seen as the pillar of your family and friends, you want to maintain that at any cost, as I did. However, in 2007 things got worse. I was hearing voices, mostly derogatory ones, about how worthless I am and that it is not worth living anymore. Voices were telling me to kill myself. My relationship with my then husband was at breaking point. My poor daughter was constantly subjected to verbal abuse. I was always shouting at her. This was not my normal behavior. I was a qualified solicitor and a partner of a law firm. Staff who once respected me would shy away for fear of my anger. I took myself to my GP and he suggested I see a psychiatrist. That was shocking news to me. It took me along time to convince me to see one. When I finally did, I kept this from my family, again, for fear of stigma. Only my ex husband knew that at that time. After a few months of seeing the psychiatrist, things were still not good and I ended up being admitted to hospital for four months. I was diagnosed with bipolar psychosis adult ADHD and post traumatic stress disorder. They say when that things happen, they happen in a row. Well mine did. Following the admission, I lost all the will to live. I lost my law firm. I was divorced. I was made bankrupt and my house was repossessed. My psychiatrist signed me off as unfit to work. I'm sure you can see I felt, 'hey was the point of living anymore?' There's no reason apart from my 8 year old daughter. The drugs made me a zombie. Waking up time was 11 AM. I had no quality of life. I could not think straight, the medications were making me eat and put on weight. I told my psychiatrist I can't stop raiding the fridge at midnight as I feel so hungry. He told me to put a chain around it but forgot to say what I needed to do with the key. I was a wreck, but nobody saw my pain. I remember asking my psychiatrist and psychologist to wash my brain or re calibrated as I can't take it anymore. I've become this different, lifeless person, hardly recognizable personal hygiene was out of the window. I was so unwell that I could hardly take care of my daughter. So I had to send her to live with my parents in Malaysia, where, I was traveling back and forth. There was no more me anymore. >> Sandra story so far clearly relates the intense struggles, those facing mental health issues go through. Let's listen as she talks about how being part of quality improvement helped her come out of her shell. >> Fortunately enough, I had a good therapist who worked with me. A year into therapy she suggested I did a bit of volunteering and attend some recovery and well being courses. One of these courses was a coproduction in research. After doing this course, I put my name down for any opportunities to be involved in research work. It was known as facial and public involvement. At this point my life was still full of anxiety and I was struggling. In June 2014 I joined a wonderful multidisciplinary quality improvement project team as a member with lived experience of severe mental illness. The project was about improving physical health assessment for people with severe mental illness. People with diagnosed mental illness on average die around 20 years earlier than those without such diagnosis. Some because of suicide but mostly because of poorly treated physical illnesses. Mental illness has been assessed as constituting around a quarter of the disease burden in developed countries. There is much bigger treatment gap for mental illness than physical illness. This project gave me the platform to come out of my shell. There was a routine, at least for every fortnight. There were no hierarchy amongst the team. We came in as equal partners. Service uses were involved in every aspect of the quality improvement process. It created an opportunity for us to learn new things together. A shared understanding of the process, and have a similar perspective from start to finish. Process mapping sessions were facilitated to describe current systems and processes on the ward and identify when new activities need to be placed to achieve the project objectives. This identified the duplication of effort for recording and undertaking physical health care assessments of patients by different health care professionals. Also, the physical health care assessment was being recorded in different places by nurses and doctors, with no formal discussion of feedback to the patient. Furthermore, although a physical health assessment form was opened for a patient, not all the assessments were carried out. So we created different ways of tackling these issues. >> Sandra discusses some of the solutions she and the project members came up with in this next part of the story. Consider how important these are in the field of quality improvement. >> For example, one of us service uses raised a question as to whether the patients can be given a copy of their physical health records. It was agreed that patients can have a copy of their records. We co-designed a patient centered shared decision-making tool to facilitate discussions between health care professionals and patients about their risk factors for cardiovascular disease and diabetes. A subgroup reviewed existing booklets and tools and identified some of the key features that they wanted to include in the physical health plan. Some of the most important features were that it was held by the patients or service users, that it should be easy to follow and provide individualized personalized advice for the patient or service user. The booklet gave patients an opportunity to have a conversation with the staff about taking care of their physical health. We also co-designed training material and a video for recovery college on physical health and contributed to publications. So what are the lessons from our experience? It is still unusual for patients and the public to be involved in quality improvement projects from beginning to end. The reasons include a lack of confidence about quality improvement and working with patients and the public, poor experiences of quality improvement and patient and public involvement, limited leadership and managerial support. Limited understanding of how to do this well and lack of resources. But our project provides an example of how health care professionals and service users can learn to work together to make real and needed improvements to health and care settings focusing on what really matters. >> I'm sure you do join me in saying thank you to Sandra for sharing her lived experience, insights and for contributing to improvement of quality improvement in healthcare. [MUSIC]
