Pain Awareness Month: What Happens When Pain Isn’t Visible?

We often talk about primary, secondary and tertiary care as though they are clean, connected steps. But for families affected by rare disease, these steps can feel more like three separate worlds, with significant gaps between them. The issue isn’t clinician willingness, it is the way the system is designed.

Primary care is the first door; GPs want better tools, clearer pathways and faster ways to recognise potential rare disease signs, but they are often expected to do this within a 10-minute appointment, without the integrated support needed.

Secondary care is where answers should begin, yet families can find themselves moving between clinics and specialties, repeatedly having to tell their story. This is partly because the system was not designed around conditions that cross “traditional” clinical boundaries.

Tertiary care provides vital specialist expertise through genetics, metabolic medicine and specialist centres.
But while this is often where the deepest rare disease knowledge sits, it can also be difficult to access and even harder for patients to remain connected to the right specialists.

The reality is that rare disease families don’t fall through the tiers, they fall through the gaps between them.

If we want the UK Rare Disease Framework to become a reality, we need clear referral routes that every clinician can follow, integrated specialist collaboration rather than siloed clinics, patient-generated insight built into everyday care, and visible research pathways for families and PPIE contributors.

GPs aren’t the blocker, nor is Secondary care, or Tertiary care! The blocker is the space between them, and that is exactly where rare disease innovation needs to land.

If this resonates, share it! The more people who understand these gaps, the faster we can work towards closing them.

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