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 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 have macular disease themselves.

It’s 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 is also representative of those people using Macular Society services based around their background – including age, cultural background and lived experience. They will ensure the voice of the macular disease community is heard throughout the Society.

What does the LEAP do?

The LEAP is used to offer their opinion and feedback based on their lived experience regarding both new and existing Macular Society services. The Society provides a range of services which support the macular disease community. As services change, or new services are considered, the LEAP will be asked for their opinion of what that service should look and feel like. The panel’s lived experience will support the Macular Society’s teams to start and continue sustainable services that are accessible and inclusive of everybody living within the macular disease community.

The LEAP is part of how the Macular Society will grow and reach more people in the future. Their lived experience, opinions and suggestions will help the Macular Society to Beat Macular Disease.

How the panel works

The LEAP meetings take place four times a year. The 15 members of the panel meet online three times a year and in person for the fourth meeting.

Macular Society team members also join the meeting to talk to the panel about things they’re working on.

The panel are also asked for their thoughts and suggestions on Macular Society activities throughout the year. This feedback is given when requested by email and telephone.

The panel is led by a chairperson who has been chosen by its members. Members of the Macular Society team are also invited to join the meeting to discuss their services.

What have they been up to?

The first meeting of the Macular Society LEAP took place in January.

All 15 members of the panel were able to join and were eager to get to know each other and to understand a little bit more about what the panel is going to do. The meeting lasted approximately two hours and everyone got the opportunity to introduce themselves and tell their story.

Each member has a type of macular disease and two members also have caring responsibilities for their parents with macular disease. Ed Holloway, the Macular Society CEO, also joined the meeting to meet the panel and express his hopes on what the panel may achieve.

Then, the panel was asked to look at some of the wording that the People & Culture team uses when recruiting new members of staff. The panel offered some suggestions on how the wording could be changed to encourage more people to apply from diverse backgrounds, including sight loss, as well as suggesting other places that the Macular Society may want to advertise vacant positions.

Updates on the topics discussed in LEAP meetings will be posted on this page. Please  free to review them and share any suggestions you may have.and add your suggestions on the topics. Any feedback you may have, please send to leap@macularsociety.org.

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 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.