Community Voice - An Expert Reference Group with Direct Experience
The SLWG included a wide range of professional voices and experiences, including those of the third sector and health care professionals working at the 'front line'. The group were clear however that the voices involved in this discussion should not simply be those of professionals and policymakers but of people who might be directly impacted by the recommendations. Health policies that are well justified by other forms of evidence may be disempowering to people who live with discrimination or exclusion if those policies are not shaped by the evidence of their own lives and experiences. How the recommendations were to be developed would therefore be as important as the recommendations themselves. The voices of those with direct lived experience of the issues being discussed needed to be integral.
The SLWG therefore decided to engage a small expert reference group from a community which experiences multiple disadvantages and the complex health and well-being consequences of inequalities. Their involvement had to go beyond consultation and enable genuine participation in the process of planning and development of the report and recommendations. Given the short time frame, an established community group, called Chance 2 Change, were approached as they were already at a stage of sufficient development to be able to interact in this way. Dialogue was mediated through their peer-facilitator who helped the group to understand what was being discussed by the SLWG, created opportunities for them to explore the themes in a meaningful way, and then fed this back to the SLWG to be discussed at their meetings. A version of the draft recommendations was provided in plain English to help accessibility, and feedback from Chance 2 Change on the recommendations was taken on board by the SLWG.
The rigorous and in-depth contribution of the community voice is presented in A Chance to Change Scotland: Report of the Chance 2 Change Expert Reference Group with Lived Experience to the Primary Care Health Inequalities Short Life Working Group, with a summary in Annex B of this report. Their close involvement with the SLWG process has directly influenced the recommendations in this report.
"Some of our members have not been seeking medical support because they feel that during the current pandemic, with people dying and the NHS being overwhelmed, that they don't matter. For instance, one of our members who has been clinically diagnosed with poor mental health is currently struggling with impaired hearing, which is having a profound negative impact on their communication. This shows the positive impact of peer-support as it was through discussion with the group that the person realised that they do matter and sought support through their GP. However, following a referral they have now been waiting six months for a consultation, which reinforces the person's original thought of 'I don't matter'. Further to this discussion the group also highlighted concerns that as a result of Covid-19 a range of appointments such as diabetes/stroke check-ups as well as cancer clinics are being deferred and/or cancelled having a massive negative impact not only on those that are 'vulnerable' now but the many that will become our 'future vulnerable'."
Feedback from Chance 2 Change to the SLWG
The commentary from Chance 2 Change is robust and often very critical. All of the members have had negative experience of access to health care, and also negative experiences of interactions with health care workers. They are honest about negative perceptions ("unkind", "uncaring") but also reflect on why these perceptions arise, for example due to the absence of peer or psychological support for health care workers at the frontline of trauma and under severe stress themselves. This analysis from lived experience aligns closely with research evidence that consultations with GPs in areas of socio-economic deprivation are more stressful for patients and professionals alike, with more health and social issues in each consultation, greater pressures on time, and lower perceived empathy than in more affluent areas (Mercer et al. 2016). This has been considered to be one facet of an 'inverse care law', supported by numerous studies and recent additional analysis, commissioned by the Deep End Group, of data from the latest Scottish GP workforce survey.
Chance 2 Change's report describes in detail how the many barriers they have experienced in accessing health care have exacerbated their health conditions and worsened their mental health and that of others in their community. Their report includes a call to action for services, in particular mental health and addiction services, to be reconfigured around the needs of people rather than the structures of the organisation. They give highest priority to the lack of recognition of the effects of trauma in how services are configured and also in a lack of professional acknowledgement of the effects of poverty, stress and trauma. They call for all health professionals to become trauma informed and to have a better understanding of the impact they can have on health inequalities, for good or harm.
Chance 2 Change advice to health care professionals:
See Me – I am a person with feelings.
Listen – my opinion matters
Be Honest - even if you don't know because I would appreciate that.
Help Me Understand - please don't tell me what to do, offer me advice and where appropriate alternative solutions.
Remember I Am An Expert in your professional hands - 50:50 partnership, each valuing the other's expertise.
Consider Peer Support - it is our experience that people build confidence in people far more effectively than medication.
The focus of the group is not all on health services: they use video reporting and photography to tell their stories of the transformative effect of having been members of a peer support group. Community networks, local organisations, family and friends are essential to health and wellbeing. They describe the distress and anxiety that results from financial insecurity for groups such as theirs, and call for long term security and commitment to communities and community groups such as theirs.
The reference group are also scathing about how vulnerable communities are excluded by language and the structures of governance from decision making and strategic planning. They challenge what might even be described as a neo-colonial mindset:
"You wouldn't go to Switzerland and change their systems without first learning their language and consulting with their people – so why would you think this approach would produce a positive outcome in our communities?"
Chance 2 Change member
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