Working Age Group Project

Summary

Most important time to get the right information and support was at Diagnosis.

Help with information on how one’s Retinitis pigmentosa might develop in order to inform one’s work and career choices at diagnosis was the most selected top priority of all , followed by guidance on Access to Work and assistive technology. Information on how to manage possible work or employment difficulties was also a need. Tools and advice to help people remain in their job was also important. Retina UK should work with employers and people with RP to facilitate constructive solutions for both parties, such as adapting the workplace or finding new roles. There needs to be- work to raise awareness and understanding of Access to Work and assistive technology for those in or seeking employment were also very important.

Opportunities to learn new skills and to connect with others with retinitis pigmentosa to discuss work and career matters were also important.

The project aims to understand the gaps in service provision. Specifically, the research has explored:· –

• Signposting to and experiences of employment support upon, or after, diagnosis,
• Job choices and retraining,· Navigating job opportunities, interviews and selection processes,
• Attitudes of employers and potential employers towards RP and people with RP,· Experiences of Access to Work, assistive technology, advice, networks and support services,
• Support services which would have been useful earlier or would be useful now,· Challenges in maintaining employment,· Career progression.