Tēnā koutou. What a year 2024 has been! Not only have there been changes in Epilepsy Waikato Charitable Trust staff and trust board members, but also in leadership in Aotearoa more generally. This year our own country has seen its fair share of unrest and discontent. The elected National-led coalition government brought in some controversial new policies, but despite that there were still some big wins for EWCT in the political space. I highlight these wins and celebrations below.
Firstly, I think it is pertinent to set the scene of this year in politics, as with people with epilepsy being a minority group, these policies will likely have affected our members in some form or another. As a nation we saw protests around Māori language policies and Treaty Principles legislation. We also saw the passing of the Fast-track Approvals Bill, reinstatement of the 90-day no-cause evictions, and repeal of the previous Labour Government policies including Three Waters, the Māori Health Authority, and legislation that would create a smokefree generation. To top it off, crackdowns on people who receive benefits have also been imposed. Policies that were originally put in place to look after people, have been tossed aside, and we’ve had what ActionStation refers to as “a Coalition Government blasting through the most harmful political platform we have seen in modern history”. They say we are “on a fast-track to an economic recession, increased poverty, a trampled Treaty, an underfunded public service, and social division”. We sadly also bid farewell to the Māori King, Kīngi Tūheitia, in late August this year. His daughter, Ngā Wai Hono i te Pō became the Māori Queen. I hope that we see Kīngi Tuheitia’s call for a way forward that “brings kotahitanga to all of Aotearoa” in 2025.
Firstly, I think it is pertinent to set the scene of this year in politics, as with people with epilepsy being a minority group, these policies will likely have affected our members in some form or another. As a nation we saw protests around Māori language policies and Treaty Principles legislation. We also saw the passing of the Fast-track Approvals Bill, reinstatement of the 90-day no-cause evictions, and repeal of the previous Labour Government policies including Three Waters, the Māori Health Authority, and legislation that would create a smokefree generation. To top it off, crackdowns on people who receive benefits have also been imposed. Policies that were originally put in place to look after people, have been tossed aside, and we’ve had what ActionStation refers to as “a Coalition Government blasting through the most harmful political platform we have seen in modern history”. They say we are “on a fast-track to an economic recession, increased poverty, a trampled Treaty, an underfunded public service, and social division”. We sadly also bid farewell to the Māori King, Kīngi Tūheitia, in late August this year. His daughter, Ngā Wai Hono i te Pō became the Māori Queen. I hope that we see Kīngi Tuheitia’s call for a way forward that “brings kotahitanga to all of Aotearoa” in 2025.
However, it’s not all bad. We would like to highlight the celebrations that we have had at EWCT this year.
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The biggest wins this year were regarding two petitions that Maria Lowe (the outgoing Epilepsy Advisor) put to Parliament, over her time in the role. The first petition was put forward in 2018 to Fund ketogenic dietitians at Waikato DHB for people with uncontrolled epilepsy. After six years, a dietitian is now being trained to help children with intractable epilepsy. We are disappointed that it isn’t going to extend to helping adults with intractable epilepsy, but some movement is better than none. The second petition, Fully fund the vagal nerve stimulator for adults with intractable epilepsy, Maria put towards Parliament in 2023. This year in August (2024) the petition was heard by the Health Select Committee at Parliament, and has recently been reported on. Esther (our new Epilepsy Advisor) travelled with Maria to attend the hearing of the Vagal Nerve Stimulator (VNS) petition. Belinda Crawford-Brown (of LivaNova – the company that manufactures the VNS device), Dr Peter Bergin (Auckland-based neurologist), Sarah Fitt (of Pharmac), and Dr Joe Bourne (of the Ministry of Health) provided support at the hearing, and talked on behalf of the petition. It seems that the key to making the VNS a treatment option for those with intractable epilepsy in New Zealand, is through Pharmac. With the Government increasing Pharmac funding by $1.7 billion over the next four years (reported in April this year), this increase may make this goal more realistic. LivaNova and Pharmac appear to already be in positive discussions regarding this. Esther and Belinda are also in conversations about how LivaNova may be able to help raise more awareness around medication-resistant epilepsy in New Zealand, including through regular VNS education sessions in Epilepsy Awareness Month, on Purple Day, or on International Epilepsy Day. Following the petition being heard in Parliament, an article was published about this in the Waikato Times. A NZ Listener article has also been published by health journalist, Nicky Pellegrino.
Along with positive achievements and celebrations regarding petitions, we also saw a number of other positive outcomes and celebrations. EWCT continues to ‘lead the way’ as the regional epilepsy provider in New Zealand. We are a strong grass-roots organisation serving people with epilepsy in the Waikato and beyond. We are non-government funded and rely entirely on funding and donations. Thank you for your support.
Our other achievements for this year include:
- The continuation of our work with those directly and indirectly living with epilepsy in the Waikato and beyond. We regularly have contact with communities around clients including social service providers, ethnic providers, advocates, disability support services, health providers and medical staff, transport providers, charitable trusts, Ministries of Health, Education, and Social Development, councils, community housing providers, education centres (schools, special schools and early intervention, and tertiary providers), medical alarm providers, employment providers, and housing providers. Our guidance to clients, whom we meet in their homes, is personalised and tailored to their individual needs. We both prepare client-specific epilepsy action plans, and provide guidance on how to follow these plans, and how to administer emergency medication, to ensure safety and well-being of people with epilepsy. On average this year, we have had 240 client contacts, 340 community contacts, 10 home visits, and 8 new clients, every month, seeing an approximate 15% increase for 2024. A total of 126 action plans have been created/updated, and 23 trainings of these action plans and education around emergency medication have been provided this year.
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We continue to advocate for clients in meetings, correspondence, and online interactions with medical practitioners, government agencies, (such as MSD and Kainga Ora), social service providers, hospitals, schools, landlords, and employers. Our advisor has written many letters of support for clients, and attended several doctors’ appointments, as well as Work and Income appointments, with clients.
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Our advisor, Esther, was invited to attend the initial Paediatric Epilepsy Training (PET) course at Starship, in Auckland, to enable professional development, and allow for our younger clients, their families, and the communities around them, to receive the most up-to-date, and relevant, support regarding epilepsy and its impacts. The information in this training will be used to update our education talks and in-service training, which have been a real hit this year (with organisations that have received talks in the past, wanting regular talks, and other organisations receiving them for the first time this year). Our advisor has given a total of 33 talks, and received comments on them being “really interesting”, “easy to follow and understand”, and “insightful and eye-opening”.
- We began to create a series of pictorial books about epilepsy (an abridged version of our fact sheets), and continue to provide our books: last year’s A Quick and Easy Read About Epilepsy, as well as previous books, Ariana and Jack, Ben’s Buddies, and Understanding and Managing Epilepsy: An Introductory Guide, to families, and education and health providers, to encourage awareness and understanding of epilepsy, as well as to reduce fear and stigma around epilepsy. Discussions have begun regarding making our ‘easy read on epilepsy’ available online, and its translation into many languages. So far, we have completed pictorial books on:
• Our Epilepsy Care Team
• Epilepsy Types and First Aid
• An A-Z guide for young adults with epilepsy
Books on Causes, Diagnoses, and Treatments, Children and Epilepsy, Safety in and out of the home, Pregnancy and motherhood, and Epilepsy and the body, in the works. We had hoped to have both of these projects completed in 2024, but clients come first, and we have had a total of just over 100 new clients this year alone. When the time permits, Esther (who has a background in social and cultural anthropology) would also like to work more alongside Research Associate, Dr Isabelle Delmotte, investigating the social, cultural, and political aspects of living with epilepsy.
- We began to create a series of pictorial books about epilepsy (an abridged version of our fact sheets), and continue to provide our books: last year’s A Quick and Easy Read About Epilepsy, as well as previous books, Ariana and Jack, Ben’s Buddies, and Understanding and Managing Epilepsy: An Introductory Guide, to families, and education and health providers, to encourage awareness and understanding of epilepsy, as well as to reduce fear and stigma around epilepsy. Discussions have begun regarding making our ‘easy read on epilepsy’ available online, and its translation into many languages. So far, we have completed pictorial books on:
- 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.
- We farewelled two trust board members, and one employee, this year: Cyril Markham and David Lowe, and Maria Lowe, respectively. These wonderful people have been with Epilepsy Waikato Charitable Trust since its inception in 2011. They worked long and hard hours to make our organisation what it is today, and their blood, sweat, and tears are recognised. Maria Lowe, our previous Epilepsy Advisor, worked tirelessly, and for many years volunteered her time and wisdom, to help those with epilepsy in the Waikato region. She left, for Esther, some huge shoes to fill. Her husband, David Lowe, was the trust’s chairperson for more than 8 years, and his abilities to run the board and keep EWCT fighting the good fight are certainly missed. Cyril Markham, was our hugely experienced go-to man on making sure we spent our funds wisely. He also ran the Alarms section of our organisation, providing seizure products including alarms, anti-suffocation pillows, and harnesses, to enable the families we support to have a better quality of life. Maria and David Lowe were both presented with Life Memberships to Epilepsy Waikato Charitable Trust by our Patron, the Hon Tim Macindoe, at EWCT’s AGM this year in September.
- EWCT appointed David Nicholls as our new administrator/secretary (info@ewct.org.nz) in late August, 2023, and Esther Liddle was appointed as an epilepsy advisor (esther@ewct.org.nz) from November, 2023. Both have hit the ground running. David and Esther are combining their skills and interests on IT and inclusivity of all peoples, to enable a service that is structured and easy-to-follow, and is welcoming to those of all genders, ethnicities, and ages. Esther intends to make inroads with more isolated, and smaller, communities in the Waikato, and began this by partaking in a radio interview with Craig Mitchell of Raglan Community Radio. David and Esther are currently improving the client database, and getting an idea of where social/support groups would be best located. We have continued to offer our bi-monthly social events in both Tokoroa and Hamilton this year, thanks to the kind support of the United Community Centre and Café Fresca, respectively. With the changes in politics this year nationally, and specifically for our organisation, David and Esther, through the Trust Board, have had to look at other funding avenues for clients and for our organisation. EWCT has also brought on three new board members: Rebecca Cupples, Tui Sarsfield, and Jacqui Elphick.
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We have continued to reach out to our clients through social media providing updates, and sharing interesting articles on our Facebook page throughout the year.
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 13th January 2025.
Keep safe and well.