Jumping the care gap with concrete boots

It’s an inevitable and anxiety-inducing bridge that every young person and their family managing complex chronic illness will find themselves at, and often stumbling across.

In amongst the challenges of growing up and leaving school  – for those of us who have been unwell since childhood  – we will at some point transition out of paediatric care and into the adult health system. Care teams will fade away, familiar faces and the reassuring presence of consistency in accessing points of care will be dismantled, and complex medical histories often spanning a decade or longer will be condensed into a handover brief that you will swear could fit on a greeting card.

You’re in a confusing position  – old enough to be an adult and therefore apparently capable of managing your care on paper, but in reality probably still laughing to yourself as you wonder how someone managed to put a garden gnome on the roof of the English building on muck-up day barely a month ago.

Add to that that on the days when your health is at its worst, you need assistance around the house to make sure you’re able to complete ‘simple’ tasks. So much changes so quickly. You’ve been looking forward to a feeling of freedom and liberation, but quickly find that without structure and formal supports you’re drifting, looking for something to anchor yourself to. For as long as you can remember your family, and your care team have supported you; have told you that they’re here to help you. But the adult system you face now expects you to grow up, to support yourself. That’s what being an adult is all about, right?

… a troubling empty space…

For all of the varied strengths that health systems around the world have, and the many we enjoy in Australia, one of the things that nobody really seems to do well is effectively managing the transition from paediatric to adult care environments.

Even with as strong a public health system as we enjoy here, jumping that care gap is still cost and time prohibitive and exists as a troubling empty space where two fundamental spheres of health services have failed to sit down at the table to talk about handover, preferring instead to keep their attention focussed inward and leaving patients, families, and carers to figure out how to vault the space in between.

It’s the first and the most important decision you’ll make about the future of your care  – where do I go to seek care and support, and which medical professionals will I trust with the rest of my life? Despite the importance of these decisions, many will end up with the first (or closest) specialist they see. And who can blame you? Specialists are expensive and can take months to get in to see. After four months and a few hundred dollars it’s understandable that many just want to lock someone in and get on with reasserting some stability and consistency in their care.

Reflecting on my own health journey to date, I credit much of the positive progress I have made to having the support of people and care providers with whom I have been able to build a respectful relationship in which my values and health goals have been recognised, supported, and a genuine effort made to share decision-making with me.

I was fortunate to have had the time, resources, and understanding of just how important those care relationships are when I made that transition myself. I dread to think where I would stand now had I agreed to continue my care with the first specialist I met after leaving the paediatric system – a specialist who had not familiarised themselves with my complex history, would not acknowledge the role of my parents in supporting my care management (going so far as to not even address them in the room when they accompanied me), and who openly derided a model of coordinated team-based care that had supported me successfully for the last 12 years.

…this is a point in our journey where we are at our most vulnerable…

Were I not able to afford to see more than one prospective specialist or was limited in my ability to commit time I, like many others, would in all likelihood have committed to continuing my care with someone I knew I would struggle to build a healthy care relationship with.  It’s hardly a good omen for our efforts to centralise care around patients and attempt to reform health care provision if we don’t make a more concerted and genuine effort to take the onus off health consumers to coordinate the transition to adult health environments.

For myself, and for many, this is a point in our journey where we are at our most vulnerable and the relationships that we build can determine the path that we follow. All of us, regardless of background, income, independence, or remoteness deserve to be able to make an informed and considered decision about whom we trust with our care.

The absence of this capacity to act with autonomy in our own interest is one of the most significant drivers of a culture in health of providing care based on the preferences of the system and not the needs and values of patients and health consumers. Requiring people in a state of vulnerability to jump this transitional gap is in itself an unfair and undignified thing to expect. Requiring us to make that jump with an absence of support, under the stresses of the personal costs represents the unconscionable expectation that we do so against the weight of the concrete tied to our feet pulling us down. As we approach reforming models of care provision in an adult health environment we must recognise that as it stands the very first hurdle is set unreasonably high for most.

For the ever-growing number of us who manage long-term and chronic health issues from an early age, continuity of care and the right to choose who you build care relationships with are exciting opportunities to redefine and expand on the capacity for individual agency and value-driven care in our health system.

About the author

Portrait of the authorHarry Iles-Mann has over 20 years of experience as a patient relying on health systems for the treatment and management of several serious chronic physical and mental health issues. In addition to working closely with Australian and international governments, private, and not-for-profit health organisations he is also a National Youth Mental Health Advocate with Headspace Australia, co-chairs the MyHealth Record Improvement Group, is a member of the NSW Agency for Clinical Innovation and NSW Clinical Excellence Commission’s Consumer Council, sits as a Consumer Representative on the National Children’s Digital Health Collaborative Steering Committee, and is a standing member of a number of technical working groups focused on large scale system change, quality and safety, digital transformation, and health innovation and policy initiatives.