Primary Care Health Inequalities Short-Life Working Group recommendations: progress report 2023

Expert Reference Group – Lived Experience

Alongside the SLWG Report in March 2022, we published a report from Chance 2 Change (C2C), a peer support group based in Drumchapel, Glasgow. Their report (A Chance to Change Scotland – Chance 2 Change Expert Reference Group with Lived Experience Report) reflected a range of views from those experiencing health inequalities every day. The connection with C2C has been maintained and C2C have been represented on the PCHIDG by Leanne McBride, the group's facilitator, and by Jenny Fulton.

Chance 2 Change (C2C) would like to thank the Primary Care Health Inequalities Development Group (PCHIDG) for creating the opportunity for people to have their voices heard on a platform that has the power to create real change that our communities so desperately need.

The C2C involvement with the group continues to offer challenge to use our collective power to make a real difference. We are grateful to group members for sharing often very personal and difficult stories of trauma and inequality, and for ensuring that we never lose sight of the purpose of the work. They have continued to highlight the reality of living in an area of deprivation and how the cost of living and pressures on a wide range of local services impact on lives and health every day.

As well as being members of the PCHIDG, C2C have also undertaken focused pieces of work to bring a voice of lived experience to important policy issues. Individual group members have shared their stories with other groups and projects to help them include the experiences of individuals and communities who live with the effects of inequality. They have done this on a range of topics, such as community pharmacy and the cost-of-living crisis.

C2C also undertook a significant digital project. This was partly in response to the SLWG recommendations around digital exclusion and literacy. More importantly, digital skills and exclusion were topics that C2C had themselves identified as top priorities. At the end of the project, they produced their 'C2C Does Digital report' and a video to capture their hard work and the valuable learning the project generated. This included lessons for health service providers and policymakers on how to minimise or avoid unintentionally making inequalities worse through digital initiatives. The project also captures the benefits for individuals of having digital skills and confidence which help them to manage their own health conditions, use online information, and use digital platforms, including virtual consultations. The Scottish Government supported the C2C facilitator to share her experiences and learning from the project with others, including Scottish Government colleagues, and there are plans to share the lessons from 'C2C Does Digital' with others.

Bringing a group like C2C into a Scottish Government development group was an ambitious approach, intended to bring in challenge and a different way of working. We have found the input incredibly valuable in ensuring our perspective is grounded and focused on current day to day experience. We are conscious that as a development group working at national level, many of the actions are aimed to take effect over the long term and the link between discussion at the group and change in circumstances for individuals living in poverty may be difficult to see. For example, while securing £1,000,000 investment for the IHAGP programme feels like a real achievement, the impact of that is not yet visible for individual patients. We know that this is frustrating for C2C and can make it feel that they put a lot in without getting a lot back.

Group members have highlighted their concerns that engaging with the group can sometimes feel like a "tick-box exercise (tokenistic) because they give so much in terms of sharing their experiences (selling their souls) with no positive change." This frustration was evident when asking the group to share their thoughts and feelings about being an expert reference group/community voice:

"I don't think they listen; they say they want people to speak out but only if it fits their agenda."

"No difference except a fancy title for the group – expert reference group."

"It is important to have community voice."

"What do you do with the information we give you? Write another report we can't understand."

"It is all about your agenda; what about us."

"We answered your questions and wrote the report, but you have never answered our questions."

We remain keen to support and involve C2C, and a key action for the next year is to respond to this feedback and find more rewarding ways for the group to be engaged, and to never take their input for granted, without response.

The facilitator for the group, Leanne McBride, also took on a dedicated role representing the group on the PCHIDG and her reflections are below.

I started my new role in September 2022 as The Voice of Health Inequalities, working in direct partnership with the Scottish Government (SG); as part of the role, I would sit on the PCHIDG. My new role is challenging because I do not speak the same language as the SG or the PCHIDG, sometimes creating frustration and anxiety. My role is to speak up for my community and give insight into the harsh realities that so many live and die by, which is a difficult job made more challenging by language and professionals who don't want to hear it. I have found that community voice sometimes does not fit with the agenda of the SG or the PCHIDG, and I often wonder what the point is, echoing C2C's feelings of tokenism. Community voice, people working in partnership with the powers that be, actively being part of the decision-making process is sadly a working theory that still requires masses of effort from us all for meaningful inclusion.

In contrast to my above thoughts/feelings, what a mind-blowing adventure; I have had the opportunity to meet and work with some of Scotland's most inspiring professionals. I want to give my heartfelt thanks to all the like-minded people who strive every day for positive change - to create a fairer, more just Scotland.

Leanne McBride - Chance 2 Change Facilitator/Voice of Health Inequalities working in direct partnership with the Scottish Government.