GambleAware calls for more input from experts by experience

1 September 2020

There is little evidence that those with experience of gambling-related harm are involved in discussion of the subject, according to a new report commissioned by charitable funding body GambleAware.

The report from King’s College London, a review of 130 studies into gambling harm, said there was “a lack of any substantial evidence of PPIEP [patient and public involvement, engagement and participation] being undertaken within the UK gambling sector”.

However, it added that rather than there being a lack of lived experience participation occurring, it may be more likely that it does exist but “is not being recorded and/or reported in a formal manner”.

The research called for a “national level forum, network or infrastructure” to facilitate involvement from experts by exprience. Through workshops with those with lived experience, the report found that such a body should ideally be independent and fully funded.

“Workshop participants were keen to see an adequately funded, independent initiative, separate to any run by the NHS or other bodies, as in their view, this could lead to a lack of ownership and potentially be bureaucratic,” it said.

Among the areas highlighted as those in which people with lived experience wished to contribute more to the debate were self-exclusion, online safeguards, regulation and ensuring independent sources of funding for research.

In addition, it said the gambling sector should “consider undertaking a priority-setting exercise to involve people with lived experience”. This would involve those with experience of gambling-related harm helping to create a list of priorities for future research.

The report added that organisations such as regulators and gambling support services should create plans on how to engage experts by experiences, including the challenges that may be faced along the way.

These organisations should also have a “recruitment strategy” to help reach a “diverse range of views and experiences” and should consult those with lived experience about how to facilitate further such  engagement, it said. Workshop participants highlighted the importance of flexible timings and different locations for discussions in order to allow a more diverse range of people to take part.

“Workshop participants acknowledged the importance of widening participation and including people affected by gambling-related harms who are harder to reach and lack experience of engagement, rather than regular consultation with the same ‘expert’ individuals, a debate which is well covered in the literature about other sectors,” the report explained.

As well as this, these organisations should hire a lead worker to focus on PPIEP.

Other recommendations included one that communication with those who have experience of gambling-related harm be “timely, appropriate, accessible and constructive”, as well as one suggesting that “remuneration, reward and expenses payment policy should be in place so that people with lived experience are reimbursed as quickly as possible for their involvement and are not out of pocket due to their participation”.

Marc Etches, chief executive of GambleAware, said the report highlights a weakness in the current level of engagement with those with experience of gambling-related harm.

“GambleAware commissioned this research to better understand what engagement methods work best in order to successfully draw on the knowledge and expertise of those who have experienced gambling harms,” Etches said. “While the research suggests there is already some engagement with these groups, the report has highlighted a clear lack of reporting of such conversations.

“The findings have shown how important it is to capture the diverse range of views available to help improve and strengthen existing research, education and treatment and prevention initiatives, while making clear that any new representative network of people from the lived experience community would need to be entirely independent.”

Caroline Norrie, research fellow at the Health and Social Care Workforce Unit (HSCWRU) at the Policy Institute at King’s College London, said she hoped the gambling sector would consider the recommendations in the report.

“Our research identified a number of recommendations that organisations across the gambling industry could adopt to help strengthen and improve engagement with those who have first-hand experience of gambling harm,” Norrie said.

“We were also able to identify a clear set of requirements for any future forum or network to ensure participants had the right platform to share their experiences, discuss and engage in key policy and priority setting conversations.

“I look forward to seeing how these recommendations are taken forward across the industry.”