The Patient Experience:  What works well?  What is not working well?

The Office for Rare Conditions Glasgow aims to enhance healthcare and improve the quality of life for people living with rare conditions. By telling us of your experience of living with a particular condition and the healthcare you receive, we can learn about the condition and the impact it has on your life and the life of those around you.

Your experiences can give the feedback necessary to understand what to improve and what to replicate in other areas.  It also gives you, as a patient, the power to bring about change and become an active and engaged participant in your own care.

Some of the different ways to share your experience are:

Patient Reported Experience Measure Survey

The purpose of this survey is to understand what it is like to live with a rare condition, what kind of support works well or not so well, and what services and support you feel might be helpful. We are keen to identify gaps in the provision of services and areas of good practice. Your responses will help direct priorities in the future work of the Office for Rare Conditions, Glasgow.

Care Opinion

Have you had a recent stay in hospital?  Share your experience with NHSGGC here https://www.careopinion.org.uk/tellyourstory

Hospital Experiences

We have asked some of our parents/patients to write up some of their experiences when using hospital services or having a procedure. If you would like to write about an experience that you have had then please contact shannon.mullen@glasgow.ac.uk.