NHS Long Term Plan - Barnsley Macular Society - Support Group

Healthwatch Barnsley undertook research on the experiences and support needs of people living with macular degeneration as part of engagement on the NHS Long Term Plan. The discussion took place with the Barnsley Macular Society Support Group on 10 March 2019 and involved 12 participants. The group explored how health services could better support people with sight loss and age-related eye conditions. 

Participants highlighted difficulties accessing hospital and specialist appointments, particularly because of insufficient public transport and the need for some patients to travel to Sheffield for treatment. They called for more flexible appointments and the development of community-based eye clinics with specialist staff to reduce the burden of travel and improve access to care. 

A strong theme was the need for better support following diagnosis. Participants reported that people diagnosed with macular degeneration can feel isolated and uncertain about where to turn for help, making them vulnerable to anxiety and depression. They recommended the provision of Eye Clinic Liaison Officers, specialist nurses and counselling support, alongside greater access to leisure activities and befriending services to promote wellbeing and reduce loneliness. 

The group also identified concerns about hospital booking systems, accessibility within healthcare settings and staff awareness of sight loss. They recommended improved disability awareness training, more accessible technology and better-designed services that take account of the needs of people with visual impairments. Key outcomes included concerns about transport, appointment access, community-based eye care, support for newly diagnosed patients, mental wellbeing, technology and booking systems.