2025 Year in Review – Leading the Way | A year of steady mahi, meaningful connection, and practical advocacy
A Message from the Epilepsy Advisor
2025 has been a year of deep connection, steady advocacy, and growing visibility for epilepsy across the Waikato and beyond. As a small trust with a wide reach, Epilepsy Waikato Charitable Trust (EWCT) continues to demonstrate what is possible when support is personal, responsive, and grounded in lived experience.
It has also been a year of balance — holding close, relational work with individuals and whānau, while continuing to speak into the systems that shape their lives.
This year reflects a combination of continuity and responsiveness: From kitchen-table and couch conversations during home visits, to training staff in community organisations, to contributing to national policy conversations, the mahi this year has been about meeting people where they are — geographically, culturally, and emotionally. Much of the work has involved walking alongside people over time: returning for follow‑up visits, refining action plans, helping untangle systems, and being present during moments of stress or uncertainty. At the same time, opportunities emerged to strengthen partnerships, raise awareness, and contribute to wider conversations about epilepsy and disability.
2025 also unfolded in a challenging social and political environment. Rising cost‑of‑living pressures, ongoing inequities, and policy decisions affecting health, education, disability, and human rights have had real impacts on people with epilepsy. These realities reinforce why advocacy — both individual and systemic — remains essential. 2025 has seen relentless attacks on Te Tiriti, and basics like health, education, and housing becoming something we can’t all access. Our public sector (hospitals and public transport) has been privatised, putting profits over people.
Our Impact at a Glance (January–December 2025)
- Hundreds of one-to-one interactions through home visits, clinics, phone calls, and advocacy support
- 177 client contacts per month on average
- 10 home visits per month on average
- New clients supported across Waikato districts, and increasingly from outside the region
- 82 new clients supported this year
- 900+ clients now supported overall
- Clients were supported across Waikato, as well as several from Auckland, Wellington, and Tauranga, and individuals from Christchurch, Manawatū, and internationally.
- Dozens of education sessions and talks delivered to disability providers, schools, community groups, health services, and justice settings.
- 26 talks this year
- Strong student placements resulting in innovative outputs, including a podcast series and a Te Reo Māori dictionary for epilepsy.
- Ongoing policy and systems advocacy at local and national levels
- Many assessments for Total Mobility and Accessibility Concession Bee Cards.
- Increase in new clients with Functional Neurological Disorder and/or functional seizures.
- Attended many workshops and networking events to gain greater understanding of information and services available for clients.
Walking Alongside People and Whānau
At the heart of EWCT’s work has been individualised support (through home visits, phone and email support, attendance at appointments, and advocacy across health, disability, education, housing, income support or employment, and justice systems). Throughout 2025, clients have been supported with:
- Understanding epilepsy diagnoses and seizure types.
- Developing of personalised Action Plans.
- 81 action plans were created or updated
- 16 action plans and midazolam administration trainings were delivered
- Writing of Letters of Support.
- Navigating health appointments (GP and specialist), WINZ, housing, education, employment, and justice systems.
- Addressing compounding issues such as trauma, mental health, poverty, and isolation.
Many clients live rurally, where distance, transport costs, and limited services intensify barriers. Advocacy has been critical in ensuring voices are heard and people are not left to navigate complex systems alone.
We continue to network with returning, and new, social service and health providers, and make connections which would be beneficial to our clients as a whole. This networking includes through council monthly networks, and through expos around the region. Connections that have been made have enabled many people with epilepsy access to our services. We have deepened our connections with Brain Injury Waikato, Progress to Health, Pinnacle Health, and McKenzie Centre, as well as with community organisations such as Community Living Trust, HereToHelpU, and Aspire Community Living. We have also created new connections with Emergency Management, organisations that support the Rainbow community in the Waikato, as well as with Migrant and Refugee and Ethnic communities, and Te Hiringa Mahara Mental Health and Wellbeing Commission. Attendance at workshops on mental health and wellbeing, disability, and rights and advocacy held by Note2Self, Te Pou, and the Nationwide Health and Disability Advocacy Service respectively have also been attended. The expos we most enjoyed being a part of were the Activating Abilities Day (at the Velodrome in Cambridge), the Kaumatua Olympics, and Te Toi Ora Integrated Outreach Clinic.
“You guys do amazing work.” – feedback from a parent newly navigating epilepsy.
“I’m just so grateful for your presence, and for sharing your expertise… Thank you for your time, I really appreciate it, and we’re just really grateful for knowing that you’re there, and that you can assist us, and advocate for us” – voice message from parent of young person with epilepsy navigating financial and educational impacts of epilepsy.
We wish you season’s greetings. Hopefully you will be able to spend some time over the next couple of weeks relaxing, and have had a safe and amazing Christmas. The year 2025 is just around the corner and with it will come new challenges and opportunities. We hope that this year has been kind to you, and that you are now looking forward to a new year ahead and what that has to offer. We look forward to continuing to provide support and advocacy, as well as education and advice around epilepsy, in the Waikato region and beyond.
Our epilepsy advisor, Esther Liddle, will be out of the office from Monday 23rd December, and is looking forward to starting her new year on Monday 5th January 2025.
Keep safe and well.