Lived Experience Advisory Panel (LEAP)

The Macular Society’s Lived Experience Advisory Panel (LEAP) is a vital group dedicated to ensuring that the voices of people affected by macular disease are heard and considered in shaping services and support.

What is the LEAP?

The LEAP is made up of at least 15 members, 12 of whom have lived experience of different types of macular disease. In addition, there are three members who support someone living with macular disease and may also have their own experience of living with macular disease.

It is beneficial if the friend or family member also supports people with differing types of macular disease. For example a parent with a child with macular dystrophy or a person with caring responsibilities of a family member with age-related macular degeneration (AMD). This mix of people will allow for different ideas and experiences to be heard. 

The panel represents a diverse cross section of people with lived experience of macular disease, including those living with the condition as well as friends and family members who support someone affected by it. Its membership reflects the people who use Macular Society services, representing a range of ages, cultural backgrounds and experiences.

By bringing together a broad range of perspectives, the LEAP helps ensure the voices of the macular disease community are heard throughout the Society.

What does the LEAP do?

The LEAP shares feedback and ideas based on members' lived experience to help shape both new and existing Macular Society services.

As services develop or new ones are introduced, the panel is asked to share its views on what they should look and feel like. Their insights help ensure services are accessible, inclusive and meet the needs of people affected by macular disease.

The panel provides advice and suggestions based on lived experience but does not make final decisions. By sharing a wide range of perspectives, the LEAP helps ensure the voice of the macular disease community is heard throughout the Society and supports our work to Beat Macular Disease.

How the panel works

The LEAP meets four times a year. Three meetings take place online, with one held in person each autumn.

The panel is led by a chairperson, who is chosen by its members and chairs the meetings. Macular Society team members also attend to discuss their services, projects and developments, and to gather feedback based on the panel's lived experience.

Throughout the year, panel members may also be asked to share their views on Macular Society activities by email or telephone.

A summary of each meeting will be published on this page. If you have any feedback or suggestions, please email leap@macularsociety.org. 

What have they been up to?

The LEAP panel has worked closely with teams across the Macular Society, including the fundraising, sight support and engagement teams, to share their experiences and feedback on a range of projects and services.

Examples of their involvement include:

• Helping to choose the new voice for the audio version of the Macular Society’s Sideview magazine.
• Reviewing patient information, including updates to Macular Society leaflets and website content, to ensure they are clear, understandable and easy to follow.
• Supporting the recruitment of the new Director of Services, with three panel members asking candidates about their experience of working with lived experience panels and community voices.
• Testing new website menus to help improve accessibility and usability.

The LEAP panel continues to provide valuable insight and suggestions, helping the Society develop services that better meet the needs of people affected by macular disease.

The lived experience voice

The LEAP is only the start. The opinions and considerations of this panel are not the only voice that needs to be heard. As the panel develops, the voice of the people living with macular disease will become louder.

The panel consists of at least 15 members, but there are still opportunities to get involved. We encourage you to share your feedback on LEAP's work. You can also apply to join the waiting list. As members step down, other people with macular disease will have the chance to join the panel and bring new perspectives and ideas to Macular Society services.