Support group offers parents a chance to connect and share experiences

Posted: Tuesday 05 May 2020

Living with a visual impairment can be hard and talking to others affected can often be a lifeline.

As part of the Macular Society’s Working Age and Young Peoples’ Service we have a Parents’ support group, which gives parents of children with macular disease and parents who have macular disease a chance to connect and share experiences.

The Macular Society Parents’ Telephone Support Group meets once a month and topics of discussion can be anything from education and social activities, to the emotional development of their child.

Member of the group Kelly Ephgrave, who, along with two of her three children, has Best disease said she has found the group really helpful.

She said: “It’s a nice friendly group of people where you can feel free to talk about anything (it doesn’t have to be macular related). We talk about everything from kids, eye conditions, benefit related enquiries, work, etc.

She added: “I think talking in a group (especially about yours or your child’s condition) can be a daunting thought, but it’s really beneficial talking to others who understand your own personal situation.”

Colin Daniels, the Macular Society’s Working Age and Young Peoples’ Service Manager, said: “Parents having the chance to talk to other parents about their child’s social, educational and emotional development reduces the feelings of isolation for both the parents and their children.

“All parents can feel a little out of their depth from time to time, and more so than ever at the moment, when many parents have the added challenge of home schooling their children. You cannot underestimate how helpful it can be to speak to others who are facing similar challenges.”

If you feel that you could benefit from the Macular Society’s Parents' Telephone Support Group and would like either more information or would like to join the group please contact Colin Daniels. You can email Colin on Alternatively