We are delighted to launch a new report, Misunderstood and Underserved, summarising the key findings of a 2023 patient experience survey and key recommendations for policymakers.
You may recall this project has been developed in collaboration between Immunodeficiency UK and Takeda UK Limited. Both Immunodeficiency UK and Takeda UK Limited have provided input into the development and roll-out of the survey and contributed editorial review of the summary report. Takeda UK Limited provided financial support.
We’ve appreciated your patience whilst the report has been in development. It was important to get it right with so many valuable insights shared during the survey around:
- Symptom awareness and diagnosis
- Experience of the care pathway
- Awareness of non-clinical support
What is striking is that that even after receiving a diagnosis – which in itself, respondents found very challenging – just 52% of those who responded with primary and secondary immunodeficiency reported a good or very good quality of life after diagnosis in 2023 (n=288).1
Please read and share the report as appropriate to help raise awareness of the unmet need facing so many patients. Immunodeficiency UK will use the report as the basis for further campaigning and engagement with those who can help to make much-needed progress.
Thank you again to everyone who took the time to participate in the survey and for your continued support in campaigning for change.
- Immunodeficiency UK and Takeda UK Ltd, Misunderstood and underserved 2023 patient experience survey of Primary and Secondary Immunodeficiency Disorders (PID & SID) services, 2025
