Research
Putting lived experience in the spotlight
LIVED EXPERIENCE SHOULD BE AT THE FOREFRONT OF ALL NF2 SERVICES
NF2 is classed as a rare disease which means that it is not widely understood.
Clinical research has significantly improved our understanding of Neurofibromatosis Type 2 however, there are few studies looking at the psycho-social impact of the condition.
We believe that researching lived experience can help guide clinical services and provide incredible insight into life with NF2-related schwannomatosis.
WHAT DO WE MEAN WHEN WE SAY LIVED EXPERIENCE?
We believe that only those who have first-hand experience of NF2 can truly communicate them to the outside world. As a result, it provides an understanding of the condition from those who actually live with it.
Many people can be affected by NF2 but only those diagnosed with the condition can know what it is like to live with it. If it seems simple, that’s because it is.
When we look at research, we seek to understand the experiences of people who live with NF2 using methods such as phenomenology.
NHSE Patient Experience Report
We recently conducted a survey in the UK NF2 community to research patient experience of NF2 Specialist Clinics in England. Summary of findings and subsequent recommendations can be found below.
Key Areas Highlighted
- Psychological Support
- Communication Access Issues
- COVID Strategy
- Digital Access
- Consistency across clinics
- Patient Expectations
- Consistent Patient Experience Measures
