The time is now!

Last week I was lucky to be able to travel to Melbourne and participate as a consumer/Lived Experience representative in a couple of conferences.

The prompt for my trip was to attend the International Congress on Obesity (ICO) – I was part of a group of Lived Experience advocates, including some of the team from the national Weight Issues Network. This is a large conference – around 1,000 people from all over the world – that takes place every two years. This was the first year that people with lived experience were explicitly included.

As I was going to be in Melbourne anyway, I also went along to the Wild Health Digital Health summit. I was alerted to that by regular posts from someone I’m connected with on LinkedIn.

It was a massive week of learning, reflection, observation, and ideas sparking. It’ll take a while for me to make sense of everything – but here are some initial cross-cutting reflections from the two events. Some of these are reiterations of things I’ve known, others are new.

I think it’s time for a revolution in how we think about consumer, carer and lived experience input.

  • Having a consumer/lived experience perspective in the room changes the nature of the discussion
  • Speaking up when I’m the only, or one of very few, people with a consumer/lived experience perspective requires extra energy from me – I need to prepare for that and factor in recharge time
  • We need to move away from the idea that it’s ok to only have a handful of people with consumer/carer/lived experience perspectives in a room when there are hundreds of other people with professional/learned experience perspectives
  • There must be consumer perspectives at every table where decisions that impact us are being made – this includes at the highest levels of government: for example, when health service funding models are being conceived and developed
  • This mean organisations need to step up their level of investment in building capacity of people with consumer/carer/lived experience perspectives to also become “learned experience” experts – particularly in technical areas – while retaining a consumer/carer/lived experience lens.

Speaking truth to power

In many of the discussions I was in last week, I very much felt a responsibility to speak consumer and lived experience perspectives into the room.

There is currently no democratic forum in Australia where consumers, carers, and community members can hold our elected representatives to account for the state of our health and social care system.

We are required to talk to our State representatives on State-funded issues and our Federal representatives on Commonwealth-funded issues. I believe this is a massive contributor to the ongoing tolerance of a highly fragmented health and social care system. It is essential that consumer and lived experience perspectives are spoken into every discussion that impacts our health and social wellbeing – so that people can move away from “meh, what are you going to do?” to “right, what are we going to do?!”.

Time to “professionalise” the consumer/lived experience voice?

I am hugely privileged in that I have a paid job in consumer/lived experience systemic advocacy and engagement. This means I have time to connect with a wide range of people with diverse consumer, carer and lived experience perspectives, and I also have time to read (some of!) the tsunami of government and academic papers that are churned out relentlessly about how to improve our health and wellbeing, as well as the systems that support them. Reading these with a consumer lens can result in quite a different interpretation than some other lenses.

But at a very rough calculation, I’m probably one of approximately 200 people[1] across Australia who have that privilege. Compare this with 642,000 health practitioners working in their registered professions[2] in 2020 and a further 588,000 people[3] working in welfare roles. And that doesn’t take into account people working in health and social care policy/government roles.

So even if everyone of those 200 people in paid systemic advocacy roles are superstars (which I’m sure many of them are), there is no way they can be in every high level policy/agenda setting discussion where a consumer/lived experience perspective is required!

As an example: one of the speakers at the Wild Digital Health Summit commented how positive it was that there were now 32 Chief Nursing and Midwifery Information Officers across Australia. It occurred to me,

…what might it be like if we had 32 Chief Consumer Information Officers across Australia?

Building consumer leadership capacity and technical knowledge – while staying grounded in lived experience

When I was at the Wild Health Summit, I was very aware of my lack of technical knowledge of the subject. (At one point, the fabulous Heather Grain was introduced on a panel as being an expert in “fire” – which I thought was interesting, but not that relevant. I have subsequently learned that they said FHIR which stands for Fast Healthcare Interoperability Resources!)

So I’m left thinking – how do we ensure that there are enough people with both a strongly grounded consumer/lived experience focus and the technical knowledge to be able to add real value in some of these more technical discussions?

I wouldn’t start from here…

Another area that I think urgently needs more people with a grounded consumer/lived experience lens and technical expertise is that of health and social care system funding models.

At both the Wild Health Summit and the ICO event, the consequences of our current funding models for health and social care came up. Both the fee for service/Medicare funded primary care system, and the activity-based funding model in hospital services, incentivise clinicians and healthcare organisations to “do more things”.

How can we have a system that is focused on prevention of ill-health, and promotion of health and well-being, when we’re incentivising the system to deliver more healthcare?

The time is now

At a recent consumer/lived experience representative network event in WA, we discussed the need for a consumer/lived experience/community-led summit on health and social care.

If we as a community don’t take the lead on outlining our requirements for a system that truly focuses on the health and wellbeing of the people in the community, we will see the consequences of a health and social care system that is designed to meet the many and varied vested interests of people and organisations who are tasked with delivering that care, rather than the people who experience it.

Now that I’m back to my day job, I’m going to be thinking about how I can play my part in building this social movement for change.

Clare Mullen, October 2022

[1] Based on 6 states and 1 territory with a peak health consumer body, plus 3 other organisations, with an average workforce of 5 people focused on systemic advocacy; plus a Council of Social Services in each state and territory; plus national consumer/lived experience bodies