Research teams are often deeply committed to adding to the sum of human knowledge to relieve suffering and increase wellbeing. And researchers may seek to “follow the evidence” in addressing need. But how easy is it for staff and patient, service user, carer and public contributors not to be affected (at least a little) by the opinions and values widely held by decision makers, the media or our peers? And if research findings point in a direction different from the mainstream, does trying to persuade others to act on these findings require swimming against the tide?
To begin with, I believe people with serious (often multiple) health conditions, or frail older or other disabled people who require social care, are often talked about in the context of a burden on services or drain on society’s resources. The richness of their experiences, contribution to families and communities past and present, may get a mention – but sometimes it can sound as if the most important thing about them is that they cause, or indeed are, a problem. A variation on this theme is that it is assumed that their lives are necessarily so miserable that attempts to improve their wellbeing are pointless, even if this is very much at odds with reality!
If life is seen as a competition for scarce resources, for instance between older and younger people, this is maybe unsurprising. And for exhausted frontline health and care staff or managers fretting in the middle of the night about how to reduce waiting lists, each person seeking support may understandably result in a sinking feeling. Yet this is not the only way society can be organised, especially in a rich country where many sectors of the economy are still highly profitable (indeed some economics researchers think profits are a key driver of inflation at present).
A quick glance at the headlines – and sometimes a careful look at assumptions behind policies and practices – show that other sets of people are frequently portrayed as undermining their own health and wellbeing or that of others. Of course, practically all humans do harmful things occasionally, but stereotypes (sometimes contradictory) are too often used to explain away inequalities. Sometimes the tone is compassionate, if patronising, at other times more fearful or hostile.
So people on low incomes who are struggling to stay well-nourished and warm enough as prices soar may be seen as simply unable to shop or cook properly or as feckless “scroungers”. There may be a place for trading tips on how to do more with less, but this is hardly a complete solution. Those who are working class may be seen as lacking in drive and ambition, which is why they are paid less – though if they ask for more, they may be accused of doing so at others’ expense. Likewise women may be viewed as either unhealthily passive and hence failing to protect themselves or as too aggressive. The focus of alarming newspaper stories may shift, one moment on migrants and refugees, the next on other minorities, who may be depicted as demanding endless accommodations or adjustments from the rest of society or trapped in unwholesome lifestyles. Regional stereotypes may be thrown into the mix, in which south Londoners in general, from shop assistants sofa-surfing because they cannot afford a home to residents of Brixton Prison, are part of a “metropolitan elite” who are somehow to blame for suffering in other regions (which are stereotyped in other ways)!
Of course, those leading research will tend to reject crude caricatures. But is it tempting sometimes to seek out those seen as more reputable citizens to represent the public in research involvement, or more “responsible” members of the groups with high health and care needs, who might co-operate in reducing the, er, burden?
Yet locally and elsewhere, people with high needs often do a lot to care for themselves and others, though this may go unrecognised, partly because they may prioritise what for others is seen as easily achievable or irrelevant, though sometimes stress and mistrust may prompt unhelpful actions. And in neighbourhoods and places of work and study across south London, constant small acts of kindness and solidarity enable people to survive and sometimes thrive, despite hazards and hardships. Perhaps this was especially visible earlier in the pandemic.
Another common approach in research may be to focus on those being researched as having problems. This has its uses: modest interventions to address practical obstacles to good health or care can often make life considerably better for people with the kinds of issues studied in the ARC. Those with lived experience who get involved can shed light on the context, and human cost if difficulties are not tackled, and assist in developing and communicating about approaches which work.
However, on its own, this focus might miss out on some of what patient, service user, carer and public contributors can offer, and not address certain issues which may get in the way of acting on research findings, or undo some of the good done. Calling for more resources to be directed towards those who may be multiply marginalised, and their voices attentively heard, may be regarded as unrealistic, even disruptive. The pandemic, surge in inequity and growing divisions in society, including, in some quarters, stoking of prejudice, have shed light on the importance of broader factors shaping health and care.
Delving into the wider problems which drive up health and care needs, in partnership with those affected, their loved ones and communities, and exploring how these might be tackled, can also be of value.
Involving diverse people with relevant lived experience, increasingly using participatory research methods and seeking to bring about change can play a part in tackling some of the burning issues affecting so many people locally and beyond. These are difficult times for many. But together patients, service user, carers, communities, research staff, health and care workers and the wider public have a chance of more fully understanding, and seeking solutions to, the problems which get in the way of health and quality of life.