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.
Priority Areas
Based on feedback we receive, we provide recommendations to NF2 clinical services. Working together with our clinics enables them to identify ways they can improve our experiences and helps to inform decision making within their teams.
Our goal is to identify key priority issues which shape our campaign work. Our current area of focus are:
- Accessible Information Standard and Remote Captions
Many people with NF2 face communication barriers during healthcare appointments. Despite the Accessible Information Standard, there remains little understanding of what good communication support looks like. Too often, free speech-to-text apps are used instead of qualified captioners, raising ethical concerns and compromising accuracy. We are campaigning for better awareness, policy guidance, and training to ensure the NHS meets its legal and ethical duties in the age of AI. - Patient Advocates and Informed Decisions
Communication barriers can make it difficult for people with NF2 to fully participate in their own healthcare decisions. Family assistance, while well-intentioned, can sometimes lead to unbalanced dynamics. We fully support family assistance if it is the patient's choice. What we are campaigning for is greater awareness, and choice, of using Patient Advocates, trained individuals who support independence, understanding, and patient-led decision making.