One year on: SHCA publishes follow up report on delays to diagnosis

The SHCA has published a new report on reducing delays to a rare disease diagnosis, analysing the progress made over the past year against existing government actions and commitments.

In June 2023, the SHCA published our original report, Navigating the labyrinth: reducing delays to a rare disease diagnosis. The report explored the impact of delays to a rare disease diagnosis based on the testimonies of our charity members, and made 10 recommendations to reduce long waits.

Today we are publishing a follow up report: Measuring progress one year on. The intention behind this new report is to celebrate successes made and hold policymakers to account where progress has been too slow or held up.

We have graded progress made across England, Wales, Scotland and Northern Ireland against the themes of our original report as follows:

1. – Testing for rare diseases – Amber
2. – Support for undiagnosed patients – Green
3. – Awareness among healthcare professionals – Amber
4. – Mental health support during the diagnostic journey – Red
5. – A blueprint for the future of rare disease diagnosis – Amber

The full report, with rationale behind each rating, can be read here.