Lived Experience Advisory Panel
Why we need you
The Macular Society is the UK’s leading charity determined to beat the fear and isolation of macular disease with world-class research, and the best advice and support. We need to reach the thousands of people living with macular disease and sight loss, and we need your help to do this. We provide life-changing support, offer advice, information and guidance to people with macular disease and their family and friends.
Will it suit me?
If you get a buzz from helping others, then this role is perfect for you. We need reliable and friendly volunteers. To be part of the Lived Experience Advisory Panel (LEAP) you need to have lived experience of macular disease yourself, or be a friend or family member of someone who is living with macular disease.
Tasks may include:
- Joining quarterly advisory board meetings (in person or online)
- Using your lived experience to advise on existing support services
- Using your lived experience and understanding of macular disease and the Macular Society to influence service development
- Using your understanding of the Macular Society and how it supports people to support creation of new Macular Society services
- Using your lived experience to explain the emotional support that can be provided by Macular Society services and to influence change
- Using your lived experience of supporting someone with macular disease to feed back on both new and existing services
- Joining sub-committees to discuss specific areas of development i.e. digital services, in person services
- Reading service proposals and policy and feeding back ideas based on your lived experience and knowledge of macular disease
- Offering feedback on Macular Society services both digital and in person
- Creating and working within the terms of reference for the LEAP.
The LEAP will become an essential part of how the Macular Society creates and sustains services. Your lived experience is invaluable to how our services are developed. Your personal experience of living with macular disease, or supporting someone with macular disease is vital to our shared ambition to Beat Macular Disease. Your voice as a panel member with lived experience will help shape sustainable services, with the voice of people affected by macular disease at the heart of what we offer.
If you are passionate about supporting other people with macular disease and the wider Macular Society in our vision, then this vital role could be for you.
The panel will be made up of 15 people with lived experience of which three will be friends or family members of people living with macular disease. Panel members will have different types of macular disease such as age-related macular degeneration, diabetic macular oedema and macular dystrophies and will come from different backgrounds and ages. This will enable the Macular Society to get the views of people affected by macular disease regardless of background or condition.
Time commitment
The LEAP will meet four times per year for approximately 2 hours. However there will be reading of proposals and offering other feedback on services throughout the year, so flexibility to include this time is required. If you choose to join a subcommittee this may also take up some additional time.
Due to the nature and importance of this role we will request a minimum time commitment of one year or four meetings.
To ensure that the LEAP is representative of the macular disease community across the UK, we are particularly keen to encourage applications from under-represented groups. This will help make sure that what we do and how we do it is inclusive.
Supporting you
We value our volunteers and we provide the support you need to be confident and successful in your role. You will learn more about us, our work, more about macular disease and subjects that are important to us such as confidentiality and looking after yourself and others. Our programme is flexible, and you can take part in some of it from the comfort of your own home. The Working Age and Young People service manager is on hand for individual support, and you can enjoy the wider help offered as a member of our volunteer network. We will reimburse you for reasonable out-of-pocket expenses.
Offering you help
If you see yourself in this role, please get in touch. If this isn’t for you but you’re interested in volunteering, we’d still love to hear from you. We have other exciting volunteer opportunities that may be a better fit for your time and experience.
Contact
For further information please email Colin Daniels, Working Age and Young People service manager at leap@macularsociety.org
Apply for the LEAP
The LEAP will become an essential part of how the Macular Society creates and sustains services. Your voice as a panel member will help shape sustainable services, with the voice of people affected by macular disease at the heart of what we offer. Apply to be part of LEAP today.
Other volunteer roles
Our volunteers are at the heart of the Macular Society, helping to Beat Macular Disease. We have a variety of roles available, depending on what you would like to do and how much time you can give.
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