“We must listen, learn and change the way we do things”: a Public Health perspective on vulnerability and inclusion during the pandemic
I want to share with you my perspective of working in Public Health in the UK, specifically the reality of responding to the Covid-19 crisis and the concept of vulnerability. I share this because I know we have to listen, learn and change the way we do things.
The Covid-19 crisis has proven how quickly we can adapt and mobilise, but it has also highlighted gaping holes in the system. It took us months to establish basic, meaningful networks of people who might reach excluded or vulnerable groups and in some areas we had to start from scratch.
I can’t help but wonder, would we have done things differently if the Council I was working in was already more connected to these communities? If there had been established ways of listening in place before the outbreak that could have sought out and heard about the experiences of people from the start. Unless we consistently commit to building these types of connections, the same problems will keep playing out and marginalise the same people. We are seeing it again now with who and how we prioritise groups such as the homeless or ethnic minorities for the Covid-19 vaccine.
Including the excluded will inevitably always feel like paddling upstream, but my experiences during this pandemic have indicated to me there is more to do than I first thought.
Describing people as ‘vulnerable’ in the health and social care world has always been contentious, but intended to mean those who are systematically given a harder time of life. For example, being poor, or homeless, or having a mental health condition. For those dealt these cards there is no reason why their lives should be more difficult than for others, except that our society has, over time, developed norms and biases that work against them. Such groups and individuals will consistently have more hurdles to jump, more setbacks, more fear, and more grief than those who are exactly the same but do not have a ‘vulnerable’ feature.
Although a flawed concept, having some ‘vulnerable group’ language provides a lens to re-bias activity in a direction that equalises. Talk of ‘vulnerable groups’ should, at its core, be motivated by wanting to ensure outcomes like having a happier, healthier, longer life are equally available to everyone. But achieving such improvements and equality requires more good to be channelled to the people that our structures and systems would otherwise neglect, marginalise and discriminate against. Sir Michael Marmot describes this as ‘proportionate universalism’, a type of positive discrimination.
The Covid-19 context
During a crisis resources get tighter and need to be allocated urgently to where the greatest good can be done. Reconfiguring society to ‘protect the most vulnerable’ is a concept that suddenly has to be made real or certain subgroups of the population may be lost. In a global pandemic, who and how do we decide to prioritise?
The rise of Covid-19 moved science, politics and health to quickly identify those who were most likely to die from the illness that the virus can cause. Data gathering and research found distinct cohorts – those over 75 and those with particular medical conditions. These cohorts were labelled ‘vulnerable’ or ‘extremely vulnerable’. Hospital care, GP surgeries, national health databases and commissioning groups scrambled versions of lists of these people for any given area. In local government the people on these lists were then prioritised for support on the basis that they were suddenly housebound.
Covid-19 mainstreamed prioritising the vulnerable through the huge collective effort of society. However, the definition of ‘vulnerable’ narrowed almost overnight to mean nothing more than ‘at greatest clinical risk from the virus’ rather than ‘at greatest risk of harm’. This happened despite an early Local Government Association (LGA) document outlining the other important categories of vulnerability (such as inclusion health groups) and the roles of the Council and Voluntary sectors in supporting them1.
In the first six months of response to Covid-19, the Council I worked at so heavily prioritised the newly defined clinically vulnerable group, that we worked against directing additional support to anyone else, with a few politically sensitive exceptions such as the homeless.
The narrow lens of vulnerability in action
With tremendous time, energy and financial investments from across the Council, within about two weeks our teams created a helpline staffed by a range of re-deployed staff and community development workers, able to signpost people to support for almost any need. Call handlers gave reassurance, put people through to financial aid, or arranged for someone to get their shopping. But the helpline was exclusively for those who were on the new Covid ‘vulnerable list’; the phone number was only distributed in the letters to the clinically vulnerable. Everyone else had to go to our webpage which listed the same charity and volunteer groups that we already had in our database, with no idea which of them were still active.
This same pattern of who got attention applied to everything we did. An impressive food parcel delivery system was established, giving out weekly food to those who were clinically vulnerable and had requested this support. A lot of people didn’t want the food but wanted to stay on the ‘list’ so just donated it on. Meanwhile, food banks ran out of food, and the queues outside shelters giving hot food stretched on. And yet we never investigated who those people queuing were. It was many months before we began to collaborate with the food banks to see who they were helping.
Some months into our helpline and food parcel support, our Early Years team presented several business cases before getting agreement for the food parcel offer to be extended to families with young children who were financially at risk. This involved collating different sets of council data to generate a new list, then sending out letters to the chosen families in potential poverty, inviting them to use the helpline and to let us know if they wanted food parcels. Many families were confused about why they were being told they were vulnerable and used the helpline to complain.
Our NHS volunteers were used in part to provide medicine delivery for those who were clinically vulnerable, as part of the offer through the helpline and in collaboration with local pharmacies. At the same time, people who used needle exchange systems at pharmacies were not able to get a needle exchange box. One woman informed me that her and her partner had had to share one needle for four weeks and tried seven different pharmacies. Her partner was currently critically ill in hospital with an infected groin abscess as a result.
Getting the message across
Communication to the public was a large part of our role, constantly repeating the guidance and the need to stay at home as much as possible. The messages were delivered with little variation, and no feedback system to understand the different contexts into which the messages might be received. Locally and nationally, the delays in getting clear messages out in alternative languages were considerable, and even then, they were mainly shared only on social media.
In late July, I joined a virtual meeting with some ‘health champions’ for new migrant groups. None of the health champions knew the symptoms of the virus, the definition of being more clinically vulnerable, or any support options. They told me that all of their community contacts were at risk of physical, mental and emotional harm. Those who did not speak English had not been able to get any medications or medical appointments because they couldn’t use the phone and no longer had the option of turning up at their GP to try to explain what they needed. Most people didn’t have the internet so relied on a telephone call or a face to face visit that no one could do, and many were too anxious to leave their house. Most of the charities that used to support these people were not able to see or contact their beneficiaries.
The same disconnect
It was not possible for a Council to reach or support everyone, rather, a wider collaboration was needed. Mutual Aid groups forming as a community response to Covid-19 were part of the LGA guidance for supporting vulnerable groups. However, as some community organisations were seen to be political, and the level and safety of the support could not be guaranteed, the Council I worked for took a stance to be wary and not to advertise these groups. We did not find out what support was being provided where, or any needs that they might have raised.
There are many other examples like this, and whilst I am not proud of these things, we were doing our best in a very difficult time. You cannot judge the quality of decisions made in the face of uncertainty by their outcome, but on the care with which they were made2. I share these reflections because in the patterns of our decisions, there was an important disconnect, a misalignment. It was the same disconnect we almost always have, made even bigger by rushing in a crisis to do the thing that is most obvious to our already biased, medicalised view of the world.
Deciding who is vulnerable and what they might need is important as part of a prioritisation of resources, but to do this without any system for listening to those who are not in your predetermined ‘inclusion’ list is dangerous and unjust.
Whilst we catered exceptionally well for the newly vulnerable groups based on the direct risk of the virus, we abandoned many of those who were already at risk of harm. By not being particularly known to us or appearing on a ‘list’, people already facing inequalities simply had their marginalisation compounded.
If we had already been a listening organisation, a listening city, that sought out and heard from the start the experiences of people like our health champions, would we have done things differently?
Widening our view of vulnerability
The best thing that any person, organisation or institution can do with all this is learn. Over time, we began to learn, to listen, as did many others. Although the term ‘vulnerable’ in Covid-19 settled to encompass only the direct risks from the virus, there was a growing recognition that the initial pressures on health care, and the initial increase in deaths amongst the clinically vulnerable, is not the only or the most severe harm that a pandemic can cause.
A useful diagram that we began sharing more widely was this:
Figure 1: Four waves of the Covid Pandemic
The ‘fourth wave’ hints at what we often call the ‘wider determinants of health’ i.e. the things that significantly impact peoples’ health but have nothing to do with health care.
Public Health England (PHE) did some work to consider how these wider impacts of Covid-19 could be mitigated for health equality and health inclusion groups3. They brought together what had generally been separate categories for equality (those legally protected characteristics) and inclusion health (vulnerable groups), as well as those experiencing inequality as a result of socioeconomic or geographical factors, as shown in Figure 2 below.
Language is always moving us on, and the current umbrella term for all these groups that we most need to discriminate towards, is ‘health inequalities’ groups. As part of this PHE developed a Health Equity Assessment Tool (HEAT) to support organisations to think more systematically about the impacts of their services on these groups.
Figure 2. Overlapping dimensions of health inequalities4
Leaning on the work from PHE and the concepts from their tool, we began to identify our key groups beyond the clinically vulnerable. We then developed more targeted engagement to hear how Covid-19 was impacting these groups and what they felt they needed.
We developed this work as a three-way collaboration:
- Public health’s remit to support communities to understand the guidance on Covid-19 and stay safe
- The city’s Recovery Strategy to understand the impact of Covid-19 and how things might need to be reconfigured around ‘the people who matter most’, and
- The diversity and inclusion ambition to improve equality monitoring and engagement.
The initiative highlighted a lack of natural, routine processes to hear from a wide range of the people that have most insight into inequalities, i.e. the ‘vulnerable’ spots of our system are out of view. Unlike the lists of clinically ‘vulnerable’ groups, none of our data collection had prioritised equality or inclusion health characteristics. Not only this, but we were mainly unaware of who across the system might have good relationships with different groups so that we could begin to connect.
In this context, developing even basic networks of people that might reach equality and inclusion health groups, creating and then facilitating focus group sessions, was hard work and took months.
Although our work to identify and listen to groups was not primarily about preventing the spread of Covid-19, and more about understanding its impact on health inequalities, the two issues are not separate. It should have been obvious; without a two-way relationship to understand and then share information that was relevant, with the right support, the public health guidance often could not be followed.
Figure 3. Comms out of human context
No matter who we spoke to, people from all sectors and of all experiences were of the same mind: we have to do things differently, urgently, and from now on. The sense that Covid-19 could be the catalyst for social change and greater equality was fuelled by observing how the indirect impacts of the virus exposed our current systems as discriminating.
With all the groups and people we started to engage with, we collectively concluded we must develop genuine relationships and networks that position communities and those with lived experience of health inequalities to share, influence and make decisions. A more participative way of working, with the required processes to make this work, is necessary. Without doing this systematically, we will only know how to do things the way we always have.
The Council now plan to focus on leadership accountability for action, better data capture and linking on key groups and equality characteristics, and citizen participation, engagement and co-production around issues highlighted already, such as equality in access to services and digital inclusion.
Even as the virus continues on its rampage, and swathes of our front line are in a frenzy of testing or vaccinating or treating, somehow we have to keep stepping back to find energy and resource to re-bias everything towards the people we have not been very good at finding or listening to.
In large part due to the pandemic, health inequalities, as the catch all for vulnerability, is now a much-used term in public health. Where we previously struggled to get thinking about ‘vulnerable’ or marginalised groups in routine decisions, many organisations are now appointing to roles called ‘health inequalities lead’ or similar. Just in the last month, I have attended multiple events with communities, voluntary groups and professionals to discuss health inequalities. Phrases like ‘doing things differently’, ‘participation’, ‘inclusion’, ‘co-design’, ‘whole system’, ‘grass roots’ and ‘share power’, roll off the tongue and all the usual attenders at such groups nod enthusiastically.
There is clearly no easy formula for narrowing the gap between the beneficiaries and the disadvantaged of our current system. If there was, we wouldn’t be talking about the same issues four decades after they were first described5.
I believe some of the answers are before us if we are willing to look, listen and learn beyond ourselves. Working it out together will require listening and therefore patience, humility and courage to avoid simply moving chairs about on the deck, possibly scary mistakes, and I expect some economic upheaval. In the excitement of everyone saying the same words in the same (virtual) rooms we must be very careful that our words can trace clearly to some real-life change.
Does Amir, who at 17 years old has been excluded from education and housing, and lives in daily fear of being deported to a war zone, have better chances in life because of the words that we speak? Real people with real lives that we open up to and allow to change and influence us will keep us accountable for our words. We must ask ourselves: what marginalised person or people, are part of our lives, and are included in this decision-making process, that we might have the privilege of keeping our words accountable to them?
If the answer is not immediately obvious, let us be very careful before banding about health inequality motivational phrases, or we might end up convincing people that we are doing something, when we are not. And that is even worse than doing nothing at all.
About the author: The author of this blog is a Public Health Registrar. They have a clinical background and believe that nurturing and advocating for healthier, more equal societies in the real world is the most essential medicine.
Banner photo by Volodymyr Hryshchenko
- Protecting vulnerable people during the Covid-19 outbreak: Local Government Association https://www.local.gov.uk/protecting-vulnerable-people-during-covid-19-outbreak#:~:text=%20Overview%20of%20the%20system%20for%20supporting%20vulnerable,a%20group%20of%20volunteers%20supporting%20local…%20More%20
- Personal Communication: Mulley AG. Assessing Patients’ Utilities: Can the ends justify the means? Med Care 1989; 27: S269-S28l
- Covid-19 Suggestions for mitigating the impact on health inequalities at a local level: Public Health England https://www.local.gov.uk/sites/default/files/documents/COVID-19%20Suggestions%20for%20mitigating%20the%20impact%20on%20health%20inequalities%20at%20a%20local%20level%20%282%29.pdf
- Adapted from PHE HEAT in December 2020 by the author, for Ideas Alliance https://www.gov.uk/government/publications/health-equity-assessment-tool-heat/health-equity-assessment-tool-heat-executive-summary
- Global Strategy for Health for All by the Year 2000: World Health Organisation https://iris.wpro.who.int/bitstream/handle/10665.1/6967/WPR_RC032_GlobalStrategy_1981_en.pdf#:~:text=PREFACE%20In%201979%2C%20the%20Thirty-second%20World%20Health%20Assembly,Health%20Care%2C%20held%20in%20Alma-Ata%2C%20USSR%2C%20in%201978