When the proposal for the ARC was being drawn up years ago, helping to close the gap was a key aspect of what it set out to achieve. Projects within it can and do make a real difference. Yet, all around, things often seem to be going backwards.
The pandemic has highlighted, and deepened, existing divisions. While people from many sections of the population have suffered, people on low incomes, from Black and minority ethnic backgrounds and/or who are disabled have died in large numbers, and not only because of pre-existing health conditions. Domestic abuse has especially affected women, while lesbian, gay, bisexual and transgender (LGBT) people have often been left isolated and unsupported.
For instance, recent research by the Maudsley Biomedical Research Centre suggests that, during the first lockdown, deaths among people with learning disabilities were nine times higher than in the general population. People with certain types of mental health issues were also several times more likely to die.
Researchers elsewhere concluded that, even before the pandemic, austerity was resulting in thousands of unnecessary deaths. Also outcomes for pregnant women and babies are badly affected by socioeconomic and ethnic inequalities. Now many people are facing a sharp drop in income at the same time as steep rises in fuel prices, with predictable consequences.
Services are under pressure, in ways which may worst affect those already facing disadvantage and discrimination. The ‘Key points’ of the Care Quality Commission’s annual State of Care report present a disturbing picture of the current situation, which appears to be getting worse.
This does not mean that the efforts of our research teams, working with patient, service user, carer and public contributors, are in vain. Over the past few years there have also been advances in treatment and care, based in part on deeper knowledge and understanding to which applied research has contributed. Each person counts and the value of improving services and prevention in a range of ways should not be underestimated.
But I think it is also unhelpful to downplay the seriousness of the effects on the people whom the ARC seeks to serve, especially if talking about co-production, based as it is on sharing power and responsibility. Involving diverse people with lived experience can and does enrich research. However - as is already happening in some ARC work – more is needed. Our response to a leaking, perhaps sagging roof cannot simply be to bring out more umbrellas!
Perhaps it is time to do more pooling of knowledge and insights on structural and systemic issues affecting health and wellbeing, including with service user and community organisations and networks active among the hardest-hit sections of the population. Grim though the situation is in many ways, if we face it together, we can achieve more and better reflect the ideals behind the ARC.