Results of the 2020 Patient Experience Survey of the UK Pompe community

Results of the 2020 Patient Experience Survey of the UK Pompe community

Posted On: 19/02/2021 Recently Posted!

Last summer the LSD Collaborative distributed a survey to all members of their communities.

We have analysed 112 responses from the Pompe community and now can share the published report.

Last summer the LSD Collaborative distributed a survey to all members of their communities. We have analysed 112 responses from the Pompe community and can share the following published report:

Pompe Survey 2020 Final


The report makes very interesting reading and will help to shape future services provide by both the patient organisations and the NHS.

We give our massive thanks all those who completed the survey and contributed to such a rich tapestry of experiences.