Dementia Voice & Staffordshire Sight Loss

This week, Andrew met with Dementia Voice, one of our longest-running co-production partner groups and a new group, the Newcastle social group for Staffordshire Sight Loss (SSL). At Dementia Voice, we talked about the mental health support that is (and sometimes isn't) there for people who've just been diagnosed.

One member described their experience:

"When I was first diagnosed twelve years ago, I had an advocate to support me. I didn't want to put the pressure and the worry on my family. If I hadn't had the support - I was really down, mentally - if I hadn't had that advocate, I wouldn't be here, talking about this today. I wouldn't have known about this group. I felt to isolated. I don't know if it was the disease itself, or the fear of being told 'you have an incurable' disease,' but they helped me so much."

At Staffordshire Sight Loss we had a lively talk about many, many issues and ended up staying for an extra forty-five minutes because everyone had so much to say! Again, we talked about mental health support and people shared their experiences:

"I don't think people understand the impact if they haven't been through it. For me, being diagnosed with macular degeneration, it was like a bereavement. I was going to lose a lot of my life over time. I worked, I drove. That was the worst day, giving up my car was the worst of all."

"Vision loss, it affects so much of your life. You can be overwhelmed by it."

"Early intervention and support with your mental health after diagnosis, that's just missing. There's not enough."