Campaigns
Raising Awareness of Issues Important To You
WE ARE PASSIONATE ABOUT AMPLIFYING THE VOICES OF PEOPLE LIVING WITH NF2
We are one of three patient representative organisations in England which forms part of our campaign work. This means we engage with the NF2 Clinics to share experiences from our community and focus on areas of need reported by NF2ers.
Lived experience drives the development of our own services and we are committed to building on this work. Currently, we are campaigning on two key recommendations from our report in June 2020.
Priority Areas
We recently provided 8 recommendations to improve patient experience in the NF2 clinic service. In light of the feedback, we believe that 2 recommendations need to be prioritised.
- Psychological Support
We want to see all clinics offering consistent and accessible psychological support. All patients must be aware of what is on offer and how they can access help. - Communication Support
Communication is the gateway to all decision making. We want patients to be informed about their rights to professional communication support. Options for support must be clearly provided in order to help the patient understand what might be suitable for them. We do not believe that apps should be used other than in emergency settings.