Martin Jones has lived experiences of the harms from gambling. Here, he reflects on his involvement with the Current Advances in Gambling Research conference as a panellist and organiser.

Involved from the beginning

So here we are, three months after the event, and nearly six months from the first ‘does anyone want to join a Lived Experience session at CAGR?’ call came out. What should the take-away lessons be for next time?

“Next time you are seeking Lived Experience input into your project, why not calculate the average day rate for the organising body’s team sitting at the table, and them ask yourselves whether or not the experts by experience should not have parity with that rate? I can’t see why not, can you?”

To be honest, it was so refreshing to be invited in at the outset of the planning. And even then, we were offered an apology for not having had the call to join the first organising committee meeting. I can’t tell you how unusual this is in the Gambling Harm arena. All too often Lived Experience is consulted two or three steps down the path, when scope and content are well established.

When organisations who ought to know better are called out on this, frequently all that happens is a ‘thanks for your feedback, we really value this’ message is sent, and things carry on regardless without any real notice being taken of that feedback. And when some organisations repeatedly ask for Lived Experience input too late to have a voice in the early stages of the project, you may well understand the frustration this causes. So well done to the organising committee for getting it right at CAGR.

A platform for lived experience

Joining the Lived Experience panel was well worth doing. Myself and the rest of the panel all have an intense passion to make things better, but for the most part whatever we do feels like wading through treacle. To have a platform in front of such a distinguished audience is a rare privilege.

It helped enormously to have Steve facilitating it. Several of us had worked with him on earlier projects. Initially there were no guidelines or ground rules, as it was set up as a genuine Lived Experience session for the panel to determine the content. So, we spent some time figuring out what to do, how to do it, and who would do it. Next time it might be better to consider appointing a Lived Experience panel leader to manage the process rather than searching for a consensus to be reached at each stage?

One microphone (no turntables)

The staging on the day worked reasonably well. Having to share the microphone (unplanned but there was only one spare!) helped as it prompted smooth handovers from A to B to C etc. We all had a different approach to our preparation: some just had a few bullet points for each topic around which to frame their answer; others had written a full script out ‘just in case’; and others did it off the cuff.

“Every time I read research report, I ask myself the question ‘So what?’. Having burned through the manhours and costs of doing it, how has it reduced gambling harm?”

All are perfectly reasonable, but we may have benefitted from a ‘dress rehearsal’ to become fully comfortable with the process. Next time the format might benefit from a tweak. Instead of five answers to the same question (variations on a theme), there could be one question or topic to each panel member. That way each of us could be talking directly to one of our passions, and five topics could each receive the intensity they deserve.

Impact

The acid test for the Lived Experience panel will be the extent to which the ‘messages’ hit their targets. It certainly seemed well received on the day, but I would say that wouldn’t I! These are some of the messages I hoped I could convey. Can you remember any of them?

  • Everyone with Lived Experience of gambling harm has two sets of experience to bring to the table: the experience of gambling harm (either directly or as an affected other), and the experience of their lifetime’s education, qualifications and experience. Very often the later will far outweigh the former, so don’t overlook it. (And apologies to those of you who had to listen to my synopsis of a thirty-year engineering, operational, contracting and consulting career to illustrate this point!)
  • Every time I read research report, I ask myself the question ‘So what?’. Having burned through the manhours and costs of doing it, how has it reduced gambling harm? Fewer suicides? Fewer attempted suicides? Fewer suicidal thoughts? Fewer people being harmed by gambling? Fewer people at risk of being harmed by gambling? If not, why not? We cannot continue to indulge in intellectual exercises without seeing some tangible results.
  • Perhaps the harshest example of the failure to meet the ‘So What?’ test is the National Strategy to Reduce Gambling Harm. To read the Gambling Commission’s progress reports, you might believe that it had been a success, with hundreds of ‘milestones’ being achieved. But in the real world, the measures of success should be the degree to which harm has actually been reduced. And that is the biggest failing of the strategy and of the Gambling Commission: no attempt has been made to measure the reduction in real harm:
        • Loss of employment
        • Experience of bankruptcy and/or debt
        • Loss of housing / homelessness
        • Crime associated with gambling
        • Relationship breakdown / problems
        • Health related problems
        • Suicide and suicidality
  • What value should be placed on Lived Experience contributions? As I don’t accept payment from anyone for any of the work I do in the gambling harm field, I felt that I could offer some thoughts on how little value is placed on Lived Experience. Next time you are seeking Lived Experience input into your project, why not calculate the average day rate for the organising body’s team sitting at the table, and them ask yourselves whether or not the experts by experience should not have parity with that rate? I can’t see why not, can you?

Overall, CAGR was a good platform for Lived Experience. I am sure the next committee will build on these foundations, and there will be no shortage of volunteers to stand up and speak truth to power.

by Martin Jones.

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