Patients' experience survey of PID services

PID UK is proud to announce the publication of a report of the findings from the Patient's experience survey of Primary Immunodeficiency Disorders (PID) services. 

Measuring patient experience is important not only to guide service important improvement, but also because people's experiences of care may be linked to clinical outcomes and resource implications.

Over the course of 3 months (March-May 2016) those affected by PID in the UK were asked to answer questions about their experience of diagnosis and treatment. A total of 303 responses were collected.

The results of the survey highlight the importance of early diagnosis and providing access to different treatment options and modes of administration to ensure individual patient needs are best met.

The findings have important implications for all users of the data, and particularly for NHS policy makers, commissioners and providers and will guide PID UK in its work to improve the quality of care for everyone living with PID.

Five recommendations are made based on the key areas that have emerged and we want to now share these widely with patients, our NHS colleagues, policy-makers, and commissioners to help us all work together to deliver the best possible care for people affected by PID.

You can download the results of the survey and its recommendations in the executive report here.

If you would like to receive a copy of the full report then please contact us.

Click here to read our press release about this report.