In recent years, the profound significance of lived experience has become increasingly recognised and understood.
At MS Australia, embracing and honouring the lived experience of people with multiple sclerosis (MS) has long been at the core of our mission.
Our President and Board Chair, Des Graham, lives with MS, as do other Board members and MS Australia staff. Collectively, they bring a powerful and deep understanding of our community’s unique challenges and experiences.
And our National Advocates Program has played an important role over many years, with our National Advocates engaging with their local politicians, and media to amplify MS Australia’s advocacy priorities.
Our research program integrates lived experiences in multiple ways, including participation in studies to gather invaluable information and data, involvement in the design and development of research projects, and leadership of studies by researchers living with MS.
As the landscape continues to evolve, MS Australia has continued to explore new ways to formally embed the lived experience of people living with MS in everything we do to ensure the greatest relevance and impact for the community we serve.
In line with this commitment, MS Australia established the Lived Experience Expert Panel (LEEP) on 18 October 2023.
The LEEP is made up of 22 people living with MS or carers of people with MS. The Panel brings a wide range of lived experience and expertise to the work of MS Australia.
LEEP Members have professional experience in the disability sector, professional sports, allied health, medicine, nursing, policing, research, government and federal politics.
Members also have personal experience with inter-generational and familial MS, disability including the National Disability Insurance Scheme (NDIS) and aged care services, a wide range of treatments and medications and participation in research.
LEEP members are drawn from a diverse range of backgrounds, including younger people, older people, people from culturally and linguistically diverse backgrounds, parents, including single parents, LGBTQI+ people, and people living in regional and rural locations.  Â
Many have previous experience with disability advocacy, speaking publicly about MS, running peer support groups and raising awareness by sharing their MS story on social media.
The LEEP members each bring their unique experience and insight to the advocacy work of MS Australia and ensure that it has a strong lived experience focus.
Since the establishment of the LEEP, MS Australia’s policy team has been consulting with the LEEP on a range of submissions. LEEP members have provided important input and feedback that has significantly enhanced our submissions, including:
- Aviation Green paper – LEEP members provided feedback on their experiences of navigating air travel and airports
- Disability Royal Commission – LEEP members provided their insights on the recommendations of the Disability Royal Commission, including the most important recommendations, what was missing and what the government should focus on next
- NDIS participant experience in rural, regional and remote Australia – LEEP members provided feedback on their experience of accessing the NDIS in rural and regional locations across Australia
The case study below is an example of how MS Australia’s policy team incorporates case studies to highlight issues that impact people living with MS.
This case study was used in the Aviation Green Paper to illustrate an aspect of aviation travel that is inaccessible for people who use wheelchairs or mobility aids.
Case Study – Janine
Janine is an athlete who lives with MS and uses a wheelchair. Janine regularly travels on commercial airlines by herself to attend interstate sporting competitions and events.
Janine does not take her day wheelchair with her as she already has a large amount of baggage, including a sports chair in a travel bag, wheel bag and suitcase. It is too difficult for Janine to independently travel with the extra sports chair when she has her day wheelchair, so she must manage without it.
If Janine is travelling with a team, she can then take her day wheelchair with her. Many athletes in her situation will have someone travel with them for this reason. Often Janine’s sport wheelchair will go to oversized baggage claim, but the wheel usually goes to a different collection point, even though the items are always checked together as oversized baggage.
To overcome this issue, she now travels with an Apple AirTag on all her wheelchair items to track them. Virgin Australia has implemented a bag tracking system to overcome this baggage issue.
Travellers receive a text as their baggage comes out, letting them know which collection point their items are located at. Janine finds this to be a helpful process and would like to see all airlines implementing a similar system.
In addition to regular consultation on submissions on issues that impact people living with MS, MS Australia’s policy team will hold quarterly online meetings with the LEEP members.
The aim of these meetings is to facilitate discussion amongst the members so they can share their experiences of the health, disability and aged care systems and the impacts of living with MS on a wide range of issues, including finances, housing and social issues.
The MS Australia policy team anticipate that these discussions will identify any emerging needs or issues for people living with MS. This is particularly important now as Australia’s aged care system and NDIS are undergoing significant reform.
The MS Australia Policy team look forward to more interactions with the LEEP throughout 2024.
