Challenge: Navigating Support When It Matters Most

People living with a serious or terminal illness, and the family and friends caring for them, often face a complex range of practical, financial, legal and social challenges alongside their health and care needs. Support may be available through the NHS, local authorities, charities, welfare organisations and community groups, but understanding what help exists and how to access it can be overwhelming. At a time when people are already under significant emotional and practical pressure, they are often left asking the same fundamental questions, what am I entitled to? Who can help? Where do I go? What do I do next?

The challenge is not simply a lack of support or information, it is a navigation problem. A number of organisations and initiatives have developed valuable approaches to helping people navigate aspects of the system, but these often address particular conditions, needs, communities or geographic areas. This has resulted in a landscape that remains fragmented, with significant gaps in provision and unequal access for different groups. People can experience very different levels of support depending on their diagnosis, circumstances, digital access, confidence, socioeconomic background, cultural needs and where they live. Existing information and services are often designed around organisations or specific groups rather than around the individual and the problem they are trying to solve. As a result, those who may be most in need of support can be the least able to find or access it.

Research undertaken through Routes to Rights has demonstrated both the scale of this problem and the depth of the existing support landscape. The opportunity is to create a more accessible and intelligent navigation layer, one that starts with the individual rather than the organisation, understands their circumstances and helps guide them towards the most relevant support, services and organisations available to them. Crucially, this navigation needs to take account of who the person is, what they need and where they live, while being accessible to people who may face barriers to existing services. The aim is not to duplicate or replace the valuable work already being done, but to connect the fragmented landscape, close gaps in access and make existing support easier for everyone to find and use.

However, creating a valuable navigation service is only part of the challenge. It also needs a sustainable model for funding and delivery. Too many initiatives that seek to improve access and navigation depend on short term grants or project funding, creating a risk that valuable services disappear when the funding ends. For this model to have lasting impact and achieve national scale, sustainability needs to be designed in from the outset. The challenge is therefore to develop a service that creates sufficient value for the people, organisations and wider health and care system it serves to support recurring, sustainable income, rather than relying on a cycle of one-off funding.