Volunteer leader needed for Sussex sight loss group

The East Grinstead Macular Society support group provides practical information, emotional support and friendship to anyone affected by macular disease, the UK’s biggest cause of sight loss.

Since the pandemic first hit last year, the group have been holding regular conference calls to keep the members updated on the latest in research developments to find a cure, sharing tips with each other on how they cope with sight loss, and providing much needed social contact and support when getting together face to face has not been possible.

The group, which is run entirely by local volunteers, is organised by leading sight loss charity the Macular Society, and is one of more than 400 such support groups nationwide.

Maureen Taylor has been the group leader for the last three years but is moving away from the area.

She said: “It’s a very popular and thriving group, and the person who takes on the role will find themselves supported by a very active and willing band of committee members, including a volunteer who turned 100 this year.

“Along with regular monthly telephone meetings, we also have a variety of speakers, and a range of social activities, all of which we’ve been able to continue with our monthly calls.”

“I’ve enjoyed my time as group leader immensely. It’s been rewarding, worthwhile and a lot of fun.”

Stella Black, senior regional manager for the Macular Society said: “Maureen has been a marvellous leader; very proactive in organising the meetings, and supporting all the members.

"She has contributed a huge amount and I, and the group members, cannot thank her enough for her energy, time and hard work.

"The group is a very friendly bunch, and we’re looking for someone who is enthusiastic, sociable and who likes organising things for the benefit of others.

"You don’t need to have macular disease or any other sight loss condition to apply but it does help if you have some understanding of visual impairment.”

The group leader will work with a friendly committee to organise and run the monthly meetings. They will also act as a point of contact for the group members.

The successful applicant will receive training and will be supported in their role by a regional manager for the Macular Society.

They don’t need to have a sight impairment themselves but some understanding of working with older people would be an advantage.

Stella added: “Anyone who is interested, please get in contact with me for an informal chat, so that I can explain a little more about what’s involved and how to apply.”

The Macular Society introduced a range of new telephone and online support services after suspending all of its face-to-face activities following the coronavirus outbreak last year.

The East Grinstead Macular Society Support Group currently hold their calls on the first and third Tuesday of every month at 2:30pm, and their next call takes place on Tuesday, August 17.

The calls are open to anyone affected by macular disease, including family members and friends.

Macular disease is the biggest cause of sight loss in the UK. Nearly 1.5 million people are currently affected and many more are at risk. The disease can have a devastating effect on people’s lives, leaving them unable to drive, read or see faces.

Many people affected describe losing their sight as being similar to bereavement. There is still no cure and most types of the disease are not treatable.

Age-related macular degeneration (AMD) is the most common form of macular disease, affecting more than 600,000 people, usually over the age of 50.

The Macular Society are the only UK charity solely dedicated to funding medical research to beat macular disease, a sight loss condition that affects the central vision.

For an informal chat about the role or to find out more about the East Grinstead Macular Society Support Group, please contact Stella Black on 01306 644908 or 07494 467 980, or email [email protected]

For more information on macular disease, call the Macular Society on 0300 3030 111 or email [email protected]