We asked Clenton Farquharson, IMPACT’s thematic lead for lived experience, to reflect on our latest Ask IMPACT guide. Below, he shares his thoughts on self-funding and some suggestions for what we could do differently.
IMPACT’s most recent Ask IMPACT guide is about self-funding – the guide explores the expectations and realities, what self-funders and their families know about the care system and the skills and support they might need, and some things that might help.
People who draw on care and support reviewing this guide reflected that self-funders are not choosing a different route through the system, they’re often being “left at the side of the road with a map they didn’t ask for and no one to call for directions.”
They stressed that there’s a deep unfairness in expecting people to pay more, for less, with little support and even less transparency. They said, “being a self-funder in today’s system is like trying to board a train that doesn’t stop for you, and still being charged first-class fare.”
You’re paying, but you’re not being supported or informed. Instead, you suffer from a series of ‘myths’:
The myth of choice: The idea that if you’re paying, you’re in control is just that, a myth. What’s really on offer is a patchy market, unclear information, and too few hands to guide you through it.
A broken promise: Many people grow up believing that care will be there when they need it. Discovering it isn’t often at the worst time isn’t just a personal crisis. It’s a collective failure.
Emotional labour and silence: This guide makes visible the invisible toll on family, on trust, on peace of mind. That’s the real cost we rarely talk about.
So what could we do differently?
Start with values: People deserve care and clarity, not confusion and crisis. That means shifting the culture so assessments are seen as a right not a last resort and making navigation support a built-in offer, not a lucky find.
Turn data into action: If we don’t count self-funders, we can’t plan for or protect them. That invisibility creates vulnerability. We need national and local systems to treat their experience as core business, not a footnote.
Back trusted advice with public value: We can’t keep pushing people toward private financial advice and expecting them to swim. We need trusted, publicly backed resources that help people plan without fear or exploitation.
You can find the full guide and some resources here.
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