October 20, 2025
Immunodeficiency UK Launches Patient Experience Survey Report
Immunodeficiency UK has launched a patient experience survey report, Misunderstood and Underserved — developed in collaboration with and funded by Takeda UK Ltd. The report summarises the key findings of a 2023 patient experience survey and has invaluable feedback from patients on their experiences of immunodeficiency care, covering symptom awareness and diagnosis, the care pathway and non-clinical support. It sets out key recommendations for policymakers.
The survey found that 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). And despite agreed standards of care in the UK, experiences still vary greatly; just 52% of those who responded with primary and secondary immunodeficiency reported a good or very good quality of life following a diagnosis (n=288). Almost a fifth of respondents stated they were either not at all involved or not much involved in decisions regarding their care or treatment (n=292). 1 in 10 respondents may not have received guidance in relation to potential problems or complications to look out for following a diagnosis (n=290).
The report calls for all services to strive for the Royal Society of Physicians’ Quality in Primary Immunodeficiency Services (QPIDS) accreditation and for national policymakers to work with the patient community to develop an annual assessment on patient quality of life for local services.
