6 December 2019
Source: Macular Society
Leading national sight loss charity the Macular Society has launched a dedicated new service for younger and working age people with macular disease.
The Working Age and Young People’s Service has been set up to provide a comprehensive range of support, specially tailored to meet the needs of younger people with sight loss and their families. Through the new service, the Society will offer guidance on access to work, benefits, welfare and housing, and expand its digital services for working age and young people.
It will also help parents with children who have macular conditions, establishing a monthly telephone support forum where parents can get vital information and support, which will be chaired by a parent. In addition, it will develop a variety of tools and resources for employers to support staff with visual impairments, and for teachers and schools to help students with sight loss.
As part of the launch of the new service, the Society has created a new Facebook group where working age and younger people with sight loss can go for advice and support, and share experiences with fellow members.
The new service will be managed by Colin Daniels, who was previously regional manager for the Society’s Central East region. Colin has more than a decade of sight loss sector experience, as well as specialist expertise in welfare, benefits, employment and housing provisions for visually impaired people. He was diagnosed with Stargardt disease, a genetic condition which causes gradual loss of vision, aged 11 and has been registered blind since he was 17.
Colin said: “Helping to develop our services for working age and young people is something I’m extremely passionate about. I’ve experienced many of the challenges they regularly encounter myself, especially things like accessing benefits, employment opportunities and housing provisions. We see our younger and working age members playing a crucial role in shaping this service. We’ve had lots of useful feedback from many of them already, helping us to find out exactly what they need and expect from us.
“And we’ve already made excellent progress. Our new working age Facebook group has had a very positive response, while our parents’ telephone forum has also held its first meeting. We’ll continue to work members to ensure our offering meets their needs, both now and in the future.”
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.
Trish Clements, aged 53, who has a rare macular condition known as Mac Tel type 2, had to give up her job as a trained nurse when her eyesight suddenly deteriorated. She contacted the Macular Society as she was starting to worry about covering her bills and needed support on filling out her PIP assessment. She was put in touch with Colin Daniels who was able to offer support.
Trish said: “Colin was able to offer me advice on what benefits I was able to claim for and gave me great support with filling out the forms, which were horrible to do. I would encourage people in my position to speak to Colin. Even just to talk to someone else who has lots of experience with all those technical things and paperwork, but he was also such a lovely chap to talk to and he helped so much.
“It’s a fantastic service and it’s nice to have someone to understand what you’re going though. Someone who has been through it that can be empathetic to what you’re going though and reassure you.”
For general information on macular disease, call the Macular Society on 0300 3030 111 or email