The Victorian Responsible Gambling Foundation is seeking expressions of interest from people who have personal experience of gambling harm, including as an affected other, to join our Lived Experience (LEX) Advisory Committee.
LEX was established in October 2018 following a review of existing advisory committees in healthcare delivery, disability and mental health organisations, and of research related to best practice consumer participation in providing advice to organisations.
The committee’s primary role is to provide advice to the Foundation’s board and management on planning and implementing services for Victorians affected by gambling harm; gambling harm prevention strategies and project proposals, and research priorities and proposals.
Creation of the committee is an acknowledgement that the lived experience perspective is essential to further develop effective programs, policies and services to reduce gambling harm and address stigma.
From its first year, the committee has provided significant input into the development of the Foundation’s approach to stigma, including guidance on the language used to talk about gambling and gambling harm.
As LEX member Anna Bardsley explains, ‘I stopped using the term “problem gambler”: we are people harmed by gambling’.
Insights from lived experience
In 2020, Foundation-funded research ‘Lived experience of help-seeking in the presence of gambling related harms and coexisting mental health conditions’ was carried out by Dr Aino Suomi and Associate Professor Nicki Dowling. It found that a ‘wealth of literature suggests that engagement of people with lived experience of the target health condition can be a pathway toward achieving the goals of improved quality of care, better treatment matching, reduced health care costs, and improved public health’.
The research also established some core principles for engaging with people with lived experience including acknowledging the authority of their experience; meaningful inclusion, not tokenistic; inclusion of LEX from service and policy conception to delivery, and recognition that people’s understanding of their own experience changes with time and understanding – gambling harm is not fixed but fluid.
LEX participants consulted in the research established a comprehensive working definition of gambling harm which included:
- The experience of loss stemming from gambling, either your own or someone else’s, and the acknowledgment there are so many different types, including loss of: identity, dignity, sense of purpose, sense of order, faith, friends and family, sense of belonging, cognitive skills such as the ability to read and to concentrate, and material losses including money and possessions
- Lying about, and hiding gambling, including dishonesty, inability to pay for life necessities, employment impact, relationship breakdown, cognitive damage, sleep disorders, neglect of health, criminal activity, disassociation, overwhelming experience of fear, shame and guilt, brain changes, suicidal thoughts, feeling trapped, and hopelessness.
Why join the committee?
Current members represent a diversity of experiences in types of gambling harm and pathways to recovery. A significant group insight has been that everybody’s lived experience of gambling harm is different; an acknowledgement that respected individual differences.
This insight was also mirrored in the research with the report finding that ‘everyone has their own story and that lived experience of gambling harm involves both unique experiences to every individual and shared experiences among the individuals’.
LEX member Fred Rubinstein explains why he’s a member…
‘I joined … because I felt I had a lot to offer. The Foundation will run us through their ideas and their upcoming campaigns and operations and they will look for advice from us.
‘The most rewarding part of being on the committee is turning a really difficult time of my life into something … where I can contribute and give back and be part of a team. My input is worthwhile and helping in some small way.
‘I would say to someone thinking of joining the committee to just do it. It’s been a very rewarding use of my time. I’ve gained a lot of relationships and the feeling that my input is … listened to and acted upon is very rewarding.’
A pride-boosting experience
LEX member Lynda Genser explains why she’s a member…
‘Being on the committee is a safe place for all of us. We’re able to talk about things that happened to us; how they happened to us. Nobody ever looks down on us.
‘What the Foundation has done for me is make me be proud of what I am now, not only ashamed of what I did before.
‘You will find that you have done something not only for the greater good of others but to help yourself. It is one of the most rewarding things I’ve done and, at 80 years old, I can honestly say I’ve done quite a few rewarding things in my life.’
The closing date for expressions of interest is Monday 7 November 2022. Apply via our website.