Are you a young person or of working age?

The majority of people living with macular disease are older people with age-related macular degeneration (AMD). The working age and young people’s service supports people who have other types of macular disease and who may not have reached retirement age. These groups are:

• Working age people
• Parents and children with macular disease
• Young people (14-25 yrs old)
• Professionals supporting these groups

Working age people

This group of people is anyone who has not retired, and is over the age of 16. We offer advice, information and peer support for all aspects of daily life when living with macular disease.

The Advice and Information Service is able to answer questions on living with macular disease as well as giving advice around more complex issues through the Working Age and Young People’s service.

The society can offer advice on:

• Employment Whether you are in work or searching for a job.
• Access to Work – Advice around how the scheme supports people with central vision loss.
• Welfare benefits  – Advice about what welfare benefits you may be entitled to including Universal Credit and PIP
• Registration and Statutory Entitlements
• Using technology - The latest in how to access and use technology
• Peer Support – Through a network of working age and young people support groups
• Working Age and Young People’s Facebook Group
• Mentoring – We provided employment mentors to offer support around specific job roles.
• Counselling Service 

Parents of children with macular dystrophies

After diagnosis, parents might contact the society to ask for support with their child’s prognosis and talk more about their condition. It is a very worrying time and the Macular Society is able to offer advice to try to address some of their concerns. The Advice and Information Service can offer information and advice on:

• Education and School – Including SEND and EHCP Assessments
• College and University – Including Disabled Student Allowance with support from other charity partners
• Welfare benefits – including Disability Living Allowance and Child Tax Credits and Universal Credit
• Counselling Service 

We also have a Parents Forum, which meets on the telephone, once a month. The group offers peer support to parents of children with macular disease or parents with macular disease the opportunity to connect and share experiences. For more information about the Parents Forum, please call the Advice and Information Service on 0300 3030 111.

Young People

There are a number of macular dystrophies which affect young people between the ages of 14-25. With the pressures of growing up, education and social development, sight loss can increase the stress felt at this already difficult time. Our Advice and Information service is able to offer advice to both the young person and their parents/guardians with all aspects of living with macular disease. These include:

• Further and higher education
• Apprenticeship
• Employment and job searching
• Welfare benefits
• Registration and statutory entitlements
• Counselling service for young people over the age of 16
• Peer support through Facebook and support groups

Professionals

The Advice and Information service offers support to professionals who support working age and young people with central vision loss. The information offered to professionals can be:

• Information about diagnosis and prognosis
• Advice on welfare benefits and employment
• Teaching resources for QTVIs
• Information on Skills for Seeing and Technology
• A library of large print, expert-reviewed information leaflets, to educate and reassure your patients.

Further Details

The Working Age and Young People’s service offers specific advice around all aspects of people’s lives. The service can advise on and will try to find ongoing support in your local area. The Macular Society has additional services including Befriending, Skills for Seeing and more, which can be accessed on our Support for you page.