The personal views of an angry old woman! By Hilary M Garrett - Public Advisor

Equity is the only acceptable goal” Paul Farmer (1959-2022) Medical Anthropologist

Like most other Public Advisors for Applied Research Collaboration North West Coast (ARC NWC), I’ve had my share of Acronym bombardment. So when HEMS (Health Equity Mainstreaming Strategy) came along I thought: ‘Here we go again! I just got my failing old memory around the HIAT (Health Inequalities Assessment Toolkit) and now we’re moving on to HEMS and For Equity’

But then I sat and thought some more about the acronym and realised: ‘Well that’s damned clever!’

A hem is an edge, a fringe, something at the margin, but this HEM Strategy brings the issue of equity absolutely centre stage. Not an ‘also to think about…’ or a ‘let’s not forget…’ It is no longer peripheral to the health research process. It has to be front and centre in everything we do when looking at health and social care.

In my opinion, the NHS, Social services, housing, education, employment and the reduction of poverty, (all the corner-stones addressed by Beveridge in 1942), were aimed at tackling social inequality and promoting equity. Sadly, the COVID19 Pandemic has thrown into stark relief just how far we still need to go to address the lack of equity that stalks our society, like a fifth apocalyptic rider.

Action to effect change starts with sound research! Investigation, interrogation, delving into the what, why, when, where, and how. The whole process of making a difference is built on a bedrock of sound research. But if that process marginalises the issue of equity, we might as well pack up, go home and do a job that pays more with less stress and more kudos!

I am not a researcher, but I contribute to research, as a patient, a carer, and a member of the public. In my opinion the core role of Public Advisor is to promote, advance and safe-guard equity in health and care research. I believe the HEMS has added to my ability to contribute, by enhancing my focus through an equity lens. It has enabled me to think more clearly about what I experience, rather than just reacting. It has clarified my view, helped to order my thinking and given me a clearer voice with which to explain what was, formerly, a swirling haze of frustration.

A recent example, I have been referred to the Muscular Skeletal Service (MSK) by my GP, for a knee cartilage problem. I know it’s not an urgent issue in the grand scheme of things, although it is seriously limiting my mobility and could have long term detrimental effects to my general health. I knew it would be a long wait and I’m not pushing for a quick intervention. About six weeks after referral I got a letter with a number to call. I made the call, it was answered after 3 rings, not bad, but it was the usual automated service. I was put on hold. I stuck my phone on speaker, sat in a comfy chair, in a comfortable room, doing some jobs on my iPad, as the phone played its annoying tune – we’ve all been there, right? I wasn’t too bothered, I was happily working on my emails etc.

After 43 minutes on hold my call was answered and I was asked if I still had the problem and told I would be contacted, by phone, in the next 6 to 8 weeks. I thanked the person and rang off.

I sat and simmered about the experience. Gradually a sense of unease developed into dissatisfaction. It then began to morph into irritation and, lo and behold, full-on anger at what had happened. It was no hardship sitting sorting out my emails, and paying some bills. So why was I getting so angry?

It was simple, my ‘ForEquity Goggles’ had dropped into place; the lens steamed up as my indignation at this experience grew. I realised what it would be like for a great many other people.

My friend Kath has a landline, but daytime calls are very expensive for her. She would have to do some nifty budgeting to pay the bill after a call like this. Or then again, it was more likely, she would just hang up and not bother.

Many of my neighbours don’t have a landline at all, they rely on pay-as-you-go mobiles. They wouldn’t wait on a call like this, they can’t afford it – it’s just too expensive! They would just give up on the call and on any possibility of following the pathway to a treatment programme. They would likely become more immobile and thereby compound their existing health problems with all that immobility brings, including furthering decline in health.

It could well be argued that the design of this particular system is, at best flawed, chaotic and not fit for purpose. The cynical amongst us though might wonder if it has been well constructed to bring about a high level of drop off. A sort of natural selection occurring to weed out those with less ‘serious’ need. If you’ve got the wherewithal, you can make it to the end of the pathway to treatment. In other words, whether by commission or omission, it does what natural selection does. It ensures survival of the ‘fittest’ and drop-off of the ‘weakest’. I wonder how much real public/patient input was sought in the development of this service?

I will leave you with two more quotes from the late Paul Farmer, who dedicated his career to fighting for health care equity : “We have to design a health delivery system by actually talking to people and asking, ‘What would make this service better for you?’ As soon as you start asking, you get a flood of answers.”

“The essence of global health equity is the idea that something so precious as health might be viewed as a right.”

Paul Farmer Quote o Paul Farmer. (n.d.). AZQuotes.com. Retrieved July 16, 2022, from AZQuotes.com Web site: https:// www.azquotes.com/quote/1215358 Paul Farmer. AZQuotes.com, Wind and Fly LTD, 2022. https://www.azquotes.com/quote/1215358, accessed July 16, 2022. “Paul Farmer.” AZQuotes.com. Wind and Fly LTD, 2022. 16 July 2022. https://www.azquotes.com/qu

“A response to an Angry Lady” FROM FELLOW PUBLIC ADVISER IRUM DURRANI

I am loving your “FOR Equity Goggles!!” trust me, we all need them!!

I will start with a quote from Michael G. Marmot’s book The Health Gap: The “But people’s ability to take personal responsibility is shaped by their circumstances. People cannot take responsibility if they cannot control what happens to them. ”

The health data reports are telling us that the life expectancy and even more so the healthy life expectancy gap is widening. That means that some groups are disproportionately affected than others. In other words, some groups are disproportionally offered less of a chance to live a healthy fulfilling life.

That is not just one group, it is not just the poorest of the poor who are affected, nor is it just income or gender that lead to those outcomes. For each individual, it’s an interaction of socioeconomic determinants, protected characteristics, geography, social class, ethnicity and other determinants the intersection of which forms a new social determinant of health. For example, Laila who is an eighty years old, South-Asian, working class woman and who therefore experiences disadvantages in relation to sex, age, race and socio-economic status that she just happened to be born as/in.

My dear Hillary, if abbreviations make you angry, imagine how infuriating it is when ‘FOREquity goggles’ – or as we tend to say an equity lens – are not used to see through and thus people are told they are not doing enough or are not doing things right to prevent ill health and improve their health outcomes.

That’s where the Health Equity Mainstreaming Strategy comes in. With the ‘research goggles’ on, as that is the remit of ARC NWC, we want to help those conducting and those consuming research to incorporate an equity perspective through every stage of research.

An equity lens helps a researcher to assess the potential impact of their research on health inequities. An equity sensitive research question will address the root causes of the issue being studied and will be co-developed with a diverse group of people, including those with lived experience.

A Public Adviser being an equal partner in research has the opportunity to influence conversations and shape the direction of the whole research process based on their insights from their own experiences. It is imperative, that those involved in the design , recruitment, conducting, and delivery of research apply an equity lens to their stakeholder and research team and consider representation not just based on race, ethnicity and gender but also other factors that might be relevant such as sexual orientation, income, immigration status and health insurance.

We know that the process of change is lazy in nature but at the same time not impossible when treated with patience and perseverance. What we want is a revolution although in reality we can only expect a slow, non-linear change of mindsets among the research community. If only we could produce and give everyone a pair of your ‘FOREquity goggles’!

And yes I couldn’t agree more on the language of acronyms but if that is what it takes, then we are stubborn to keep pushing for change an acronym at a time.