The evolution of Whare Manaaki o te Tai Poutini
Eli-Ana Maiava created Whare Manaaki – a Kaupapa Māori community space for Mawhera (Greymouth) locals – knowing that a similar space was a valuable support system for her when she was a new mother. “My life was literally saved by a community space when I was living in the Hutt Valley,” she says.
“I had been experiencing some quite traumatic mental health issues and the scariest thing for me at the time was to be home alone with my baby. So, I could go there and be around other people, have a conversation and a cup of tea while someone held my baby.”
After moving to Mawhera from Wellington three years ago to connect with her iwi and Māori whakapapa, Eli’s aim was to work specifically for improving wellbeing of Māori on the West Coast, where her whānau are from. This led to a role in Community and Public Health (CPH) as Hauora Māori Health Promoter, when she noticed a gap in the community and decided to create Whare Manaaki.
What started out as a parenting programme, grew into a kaupapa Māori space for the entire community, offering a range of programmes to meet a variety of needs. Eli’s 20-year background of early childhood teaching, as well as mentoring, management, and a master’s degree in adult education was useful in creating and leading the programmes.
She also carried out research by interviewing 20 whānau on the West Coast about what their needs were and what barriers stood in the way of them being met. “How do we ensure our babies have good lives, with solid parenting? It’s about making sure that their whānau have their basic needs met so they have the capacity to then actively and intentionally think about the way they’re interacting and caring for their tamariki. That can be challenging when they’ve got a lot of stress hanging over their heads. We decided that a culturally safe, warm and inviting space where you can bring your family was the best way to support Māori parenting here on the Coast.”
“Māma or whānau can drop in for kai, community dinners or a cup of tea, and we’ve got plenty of resources for the tamariki to play with…”
The programmes range from gardening groups and breakfast clubs, to pepi and whānau coffee groups, and community Kapa Haka. “Māma or whānau can drop in for kai, community dinners or a cup of tea, and we’ve got plenty of resources for the tamariki to play with. We also do a Te Reo Māori playgroup where we do a bit of a song and a book reading session, to encourage use of Te Reo.”
An antenatal group is being developed and a Friday night rangatahi hangout programme has just started. Teenagers can come in off the street, have some kai, play some games and “just chill out together – there’s nowhere else for them to hang out on a Friday night.”
Community kai at Whare Manaaki
Staff at Whare Manaaki are currently working with other agencies to run a Safe Woman, Safe Family group, for women affected by violence in their lives, as victims or offenders. “We’ve also got a lunch programme where people can come and make kai and take it away for work or school, so that they’ve got full bellies. We offer everything with no judgement, we’ve got a pataka (pantry), vegetable garden and a freezer full of food to share with anyone. We’ve also got a community cupboard full of blankets and shoes and children’s clothes – people can help themselves.”
Eli, a mother of four tamariki aged 4 to 13 years, has resigned from her CPH role so she can dedicate more time to Whare Manaaki, which has grown exponentially. “There is just so much need, interest and support for it in the community. I’m not doing it alone, it’s part of a bigger collective and a community-led space and we all do our bit. It just took someone to take that first step and provide a space, and everyone else is filling it with all of these wonderful things.”
Eli is also a part of the South Island Alliance, Te Pā Harakeke/Nurturing Care in the First 1000 Days steering group, which is currently creating its framework principles for health services. “It goes back to well whānau and parents create well children, so looking a bit wider than just the children’s needs – what are the family’s needs in relation to doing well with that child?”
She says her ultimate goal in life is to raise wonderfully kind, confident and independent children. “And because I think collectively, like Māori tend to, I know that I can’t create those things for my children without them being surrounded by those things outside of our home as well. Ultimately, it’s about creating the environment I want my tamariki and other tamariki to grow up in, that’s going to instil a positive sense of identity and collective thinking around sharing of resources and wellbeing. That’s what I want in any project that I’m involved in, is to help create a better world for our tamariki.”
Staff Profile: Catherine Crichton
Quality Improvement Manager
Well Child Tamariki Ora Quality Improvement
Sudden Unexpected Death in Infancy
After nursing in mainly primary and community practice for 12 years, a change in direction and a passion for child health resulted in Catherine Crichton’s role with the South Island Alliance Programme Office (SIAPO).
From working in a neonatal unit, to a position at Starship Hospital, her nursing roles have been largely focused in the child health space. During Catherine’s most recent seven-year stint as a Public Health Nurse on the West Coast, she also worked as the B4 Schools Check coordinator, overhauling the process to be as streamlined, timely and cost-effective as possible. “It was exciting to be a part of change on a small scale, so that’s what attracted me to this position at SIAPO – I wanted to be a part of supporting change on a larger scale, across the Well Child spectrum.”
Lockdown was a catalyst for that change, and Catherine joined SIAPO in August 2020. “It’s been an interesting experience so far,” she says. “I’ve been able to network with a range of contacts much broader than what I could on the West Coast, where it’s so isolated that you make the most of who you meet, so I sort of carried that over into this role.”
Originally from Brazil, Catherine grew up in Wellington. From a young age, she had always enjoyed caring for others. “As a teenager, I helped look after special needs children, which gave me a lot of understanding about the difficulties that they and their parent’s go through. I also worked for IDEA Services, supporting children with intellectual disabilities, while I was training to become a nurse.”
Catherine is one of two Quality Improvement managers for Well Child Tamariki Ora (WCTO) Quality Improvement (QI) and Sudden Unexpected Death in Infancy (SUDI). The role is split to cover the South Island with her colleague Marijke Dryfhout, and they both facilitate the WCTO QI Steering Group.
Originally starting the role remotely, Catherine worked from her home in Westport while also keeping up clinical practice for a few months before moving to Christchurch. “Although it was hard leaving my close friends and support system in Westport, I love living in a city again and I’m really enjoying the SIAPO office environment.”
As part of the WCTO QI framework, she also facilitates the South Island Breastfeeding Working Group, supporting improved breastfeeding rates across the region. “It’s about looking at our data and assessing breastfeeding behaviour across the South Island, which has been a really interesting project to work on.”
Re-establishing the WCTO networking hui on the West Coast is another aim. “People have found it very beneficial and supportive to bring all the WCTO providers into one room and talk about what’s happening, so I want to help keep that momentum going to ensure everyone can keep doing the good work they’re doing.
“This way of working is completely new to me and I feel like I’m in a good place to branch out and see what else I can fit into this role.”
Step forward in quality improvement project for children with Type 1 diabetes
The five South Island DHBs have implemented a management database as part of a quality improvement project for children with Type 1 diabetes. Supported by the South Island Alliance Child Heath Service Level Alliance, the Diabetes Patient Management System (DPMS) collects patient data and provides benchmarking for Australasian quality improvement reporting.
Dr Martin de Bock, Paediatric Endocrinologist for Canterbury DHB and West Coast DHB, says the system also helps with collecting data for workforce planning. “This is really important as we think about our diabetes services and what we’re likely to see in the future, so that we can plan for it appropriately. Without the data, you can’t measure that. So, this is an easy, designed-for-purpose model that allows us to carry out that forecasting.”
With a five-year national roll-out plan, the long-term goal is to ensure equitable care for all New Zealanders with type 1 diabetes, he says. “Wherever you live in the country, we want to make sure you can access timely, equitable care and still get the outcomes and support you deserve, no matter which DHB you belong to.”
Ben Wheeler, Chair of the paediatric type 1 diabetes working group, says benchmarking allows both staff and patients at each DHB to advocate for areas where there may be needed. “After asthma, type 1 diabetes is the most common chronic illness in childhood, so it’s an important illness to focus on, as most units haven’t had a diabetes database that has allowed the opportunity for benchmarking before. This will allow us to see how we’re doing, celebrate any successes, and begin standardising activities across DHBs, so that we’re all working towards the same goal – we’re really pleased with the progress we’ve made so far.”
Stephanie Read, Child Health Regional Programme Facilitator, South Island Alliance, says it took a dedicated working group, support from each of the South Island DHB IT teams and engagement from all the clinicians involved to get the database up and running in each DHB. “Ultimately, this will support the provision of consistent services to children with type 1 diabetes and their families across the South Island.”
WCTO QI Steering Group Member Profile: Lydia Mains
After recognising a gap for mothers-to-be who needed extra support beyond the Well Child Tamariki Ora (WCTO) programme, Motueka Pūkenga Kaiwhakahaere Nurse Manager Lydia Mains created the Tūhono Service.
The kaupapa Māori programme, for young Māori parents in Waikawa and Motueka needing intensive and personalised support to nurture their babies, aims to strengthen connections and fill any gaps as early on as possible.
“We work closely with these women as they head into parenthood. They may not have family support or a secure relationship, or they may have had a traumatic childhood themselves. They could also have a mental health or addiction issue. It’s about early intervention, so their babies have the best start to life possible.”
Lydia and the team provide home visits to the parents, developing close, trusting relationships with them. “We provide support for any challenges they may be facing, so they can be the best parent possible and focus on enjoying their babies. To start with, we help them choose a midwife and look at any other needs they may have, such as finding suitable accommodation. You can’t address the need until you organise the chaos in their lives, while they’re in survival mode.”
Lydia followed her passion for Māori health, family and whānau throughout her career, after graduating with a nursing degree in 2000 and completing a post-grad qualification in WCTO. After working in Māori and sexual health in Nelson for a few years, Lydia became a WCTO nurse for Motueka, where she formed strong community connections.
In 2014, she began a role with Te Piki Oranga, a kaupapa Māori primary health provider for Te Tau Ihu o Te Waka a Maui (the top of the South) as a Māori community health nurse. A year later, Lydia was promoted to nurse manager, leading a multidisciplinary team working with referrals for vulnerable Māori. “It’s a real privilege to be working with whānau on such a holistic level,” she says.
Lydia developed the Tūhono Service last year after funding for the programme was approved by the Ministry of Health. “Navigating the health system can be hard and scary, so we support them to access these services independently. If they are feeling anxious about anything, they can just call or text their navigator for a debrief, comfort or just reassurance that they’re doing the right thing.”
The service also aims to connect them with their Māoritanga. “This can have a really positive effect on their health and wellbeing. Not only does it provide a sense of belonging and help them feel more connected to their culture, but they also want their children to grow up knowing where they came from.”
Watching the mother’s self-esteem and confidence grow is amazing, Lydia says. “It’s so rewarding to be able to be a consistent person in their lives. We want them to have access to high quality care, so they can reflect back and feel well supported – and have a positive outlook for the next stage.”
Lydia, who has a 19-year-old daughter, joined the South Island WCTO Quality Improvement Steering Group in 2019. Her extensive experience and wealth of knowledge is an asset to the team. “I really enjoy working with likeminded people, as we bring our own specialties to the table and collectively find solutions to any issues we’ve identified. It’s great that whenever I find any gaps or see how something could be done better through my nursing manager role, I can take those queries to a higher level and focus on making those improvements.”
Michael McIlhone Steps Down From WCTO Quality Improvement Group
Michael McIlhone, has chaired the WCTO QI group for the last three years.
Following over three years chairing the Well Child Tamariki Ora (WCTO) Quality Improvement (QI) steering group, Michael McIlhone is officially stepping down from the role. “It’s been a real privilege and thoroughly enjoyable,” he says. “I take pride in the collective and meaningful work that the South Island WCTO has completed during this time.”
With a new WCTO QI facilitator taking over the role earlier this year, Michael felt it was an opportune time for new thinking and leadership. “Three years is a good time to evaluate my effectiveness and relevance to the group. Our previous facilitator, Anna Foaese, has done fantastic work over the years and I equally appreciate the enthusiastic and different perspective that our new facilitator, Marijke Dryfout, has brought with her.”
He says the voice of the consumer and Māori is imperative for WCTO QI, which has been well- served and represented over the past few years. While Michael resigned as chair earlier this year, he has been guiding and supporting the group over the COVID-19 response, until a new chair is appointed.
He says chairing the group is a juggling act between individual DHB priorities and the overall needs of whānau and pepi across the South Island. “There’s still plenty of work to be done on adapting, adopting and not reinventing the wheel if it’s already been done somewhere else. Over the years, I have enjoyed the collaboration and willingness of everyone from the South Island to contribute and learn from each other.”
Michael has an impressive 40-year nursing background and was appointed in his current role as Director of Nursing for Pegasus Health in November 2014. He also sits on several other committees and health care working groups, including the South Island Mental Health and Addictions Service Level Alliance, Nurse Executives of New Zealand, Health Practitioners Disciplinary Tribunal, Kaikoura Health Te Ha o Te Ora facility Clinical Leadership Group, Canterbury Clinical Network Leadership Team and the Canterbury Infection Prevention Control Executive Committee.
Facilitating Change At The South Island Child Protection Forum
Canterbury DHB paediatric radiologist Kimberley Thomson presents at the annual South Island Child Protection Forum, held in Christchurch in February.
Every day, there is an average of around 40 family violence episodes in Canterbury alone – and 61% of those cases involve at least one child under the age of 18, living with the perpetrator or victim.
While police, health professionals, social workers and other dedicated staff are committed to ensuring the safety of families and whānau, organisations don’t often get the chance to get together and talk about what’s working and what isn’t.
The annual South Island Child Health Alliance Child Protection Forum was created to provide this opportunity. On 18 February, a range of paediatricians, family violence intervention coordinators, Oranga Tamariki liaison staff and other interested professionals from across the South Island met in Christchurch, to share best practice and hear from experts in child protection.
The forum was chaired by Canterbury DHB paediatrician Clare Doocey, who gave a presentation on the challenges for agencies and staff working in this field, titled When does it go wrong? Other speakers included Leanne McSkimming, director of Canterbury District Integrated Safety Response to Family Violence, as well as Helen Fraser, the Ministry of Health Violence Intervention Programme (VIP) portfolio manager, who spoke about the challenges, changes and future of the programme.
Kimberley Thomson, a Canterbury DHB paediatric radiologist, presented on Dating fractures in cases of suspected child abuse.The event provided a chance to network and spark discussion, says Pene Kingsford, Clinical Manager of the Child Safety Service. “I think it’s a great opportunity for us to meet, collaborate, listen and talk about our processes, thoughts and ideas – that’s how we upskill and facilitate change.”
West Coast Dhb Leads The Way With Safe Sleep Policy Audit
The most common cause of death in the first year of life is Sudden Unexpected Death in Infancy (SUDI). Nearly half of these deaths are due to accidental suffocation or strangulation in bed and many could have been prevented if the babies were put to sleep safely.
A graph showing causes of death for infants under one year old. Source: Numerator: NZ Mortality Review Database.
To help reduce these deaths, South Island DHBs adopted a Safe Sleep Policy for infants, from birth to six months. An audit tool was also developed to measure implementation of the policy and support any improvements – and West Coast DHB is leading the way.
West Coast DHB was the first South Island DHB to complete its three month audit of the policy’s implementation. The DHB provides information and models the best safe sleeping practices to young families, as well as smoking cessation advice and breastfeeding support. Resources such as safe beds and pepi pods are also discussed.
The policy ensures DHB health professionals have the necessary skills and resources to provide safe sleeping arrangements within its facilities; and consistent verbal and written advice about safe sleeping. This includes auditing between five and 10 infants every three months in both maternity and paediatric units, ensuring all relevant documentation is current, and that staff are well trained in supporting safe sleep.
Safe sleep is about ensuring baby sleeps on their back, on a firm surface with their face clear of anything that can make it hard to breathe, and in their own bed for every sleep. Babies also develop best and have lower risk of still birth or death if the pregnancy was smoke-free and if the home environment is kept smoke-free after birth.
West Coast DHB Acting Clinical Midwifery Manager Linda Monk says staff are very supportive of the audits and it’s a great way of making sure safe sleep is a high priority. “One of the reasons it’s working so well is that we’ve delegated someone to carry the audits out.”
The South Island Safe Sleep Policy Audit Working Group was established by the South Island Child Health Service Level Alliance (CH SLA) to develop the audit tools. The Safe Sleep Policy was endorsed by all the South Island DHB CEOs and implemented across the South Island.
The group has gained a significant amount of knowledge from the tool, says South Island Safe Sleep Policy Audit Working Group Chair, Dr Nick Baker. “It’s been excellent to see DHBs implement the policy and audit safe sleep practices. The results of the audit will help support improvement and effectiveness of the policy. Parents and caregivers have a right to know about keeping babies safe from preventable death, and the policy and audits are a powerful tool to help make safe care routine care – every baby, every sleep.”
WCTO Profile Michael McIlhone Chair Of The Well Child Tamariki Ora Quality Improvement Steering Group
Chair of the Well Child Tamariki Ora Quality Improvement steering group, Michael McIlhone.
Throughout Michael McIlhone’s 37 year nursing career, a strong focus on women and children’s health has been a reoccurring theme.
After becoming a registered nurse at the Christchurch Hospital School of Nursing in 1981, his first role was in the emergency department, before putting on a backpack and exploring the world. After his return to Christchurch and the Emergency Department, this was followed by some work in the surgical area and the STD clinic. A public health nurse position followed shortly after.
In 1988, Michael then moved into neonatal care, which led to a 20-year career in neonates that took him to Saudi Arabia – where he married his wife Elaine – then to Oxford (UK), Auckland, back to Saudi Arabia and then London again, and finally, home to Christchurch in 1994.
In 2008, Michael became the Nursing Director for Women and Children’s Health in Christchurch, including an 18-month secondment to Planning and Funding. He was appointed in his current role as Director of Nursing for Pegasus Health in November 2014. “Women and children’s health are an obvious and well-suited combination and my interest evolved from looking after sick children and babies in acute care, and blossomed over my 20 years working in neonates. I became interested in the child development side of things and it really opened my eyes to think – where do these children end up?”
So when Michael was asked to join the Well Child Tamariki Ora (WCTO) Quality Improvement steering group over two years ago, he says the decision was easy. “Equity is what drives me. This was an opportunity for me to champion women and children’s health and to have input into the development of services, ensuring there is a balance of care provided – equity of resources, equity of access, and equity of positive outcomes.”
Michael also sits on a number of other committees and health care working groups, including the South Island Mental Health Service Level Alliance, Clinical Informatics Leadership Team, Canterbury Clinical Network Leadership Team and recently the Canterbury Suicide Prevention Governance Group. This helps him link the systems together, he says. “I’m working with groups of people I either knew of or had professional relationships with, and my background gives me the ability to understand and contribute to the conversations being held around the table.”
He says the WCTO group is made up of people who truly believe in the work they are doing. “The members are all very committed and also well connected to their local communities. And our project manager, Anna Foaese, does a wonderful job. She gets the right people together and has a real insight on what needs to be done. She is great at project management, but is always keen to listen and learn.”
The role of chair is about governance and strategic thinking, with a good understanding of what’s going on, Michael says. “But it’s such a highly functioning group that I don’t have to do that much – I feel like I take just as much as I give.”
Ensuring the consumer and Maori are driving the conversation is also vital. “It’s so important to listen to their insight/experience/wisdom and take their advice, and this needs to take place in the form of a partnership in the initial stages of planning. We are all working towards a common goal, so the more we look at the system to ensure the best fit, work together and share ideas, the more the community will benefit.”
Improving Access To South Island Child Development Services
Photo credit: The Champion Centre
Following the Government’s announcement of additional funding for child development services (CDS), the South Island has agreed on a regional plan to improve access to specialist services.
As part of a regionally coordinated nationwide initiative, the Ministry of Health allocated over $2M to 10 South Island CDS organisations over the next four years, setting them a target to provide services for an additional 435 children on waiting lists.
To enable equitable distribution of the funding, a comprehensive implementation plan was developed by the South Island Child Development Services Working Group. Supported by the South Island Alliance’s Child Health SLA, the group includes representatives from the five South Island DHBs and five South Island NGO child development service providers: The Champion Centre, CCS Disability Action, Conduction Education Canterbury, Central Otago Health Services and Conductive Education Southland.
The plan outlines how additional FTE would be utilised across the South Island to make the most of the extra funding and address key pressure points in the services. Given the large disparity of CDS models of care, funding was not allocated based on a population proportion, says Chair of the South Island Child Development Services Working Group Jacqui Lunday Johnstone. “We agreed on a spread of FTE across the South Island CDS providers, taking into account their current service demands and waiting lists, as well as a realistic recruitment plan.”
In addition to capacity building (FTE funding) the South Island region was successful in receiving funding for two project proposals – supporting young adults with disabilities to work in CDS and delivering telehealth to rurally isolated families while also providing IT support for CDS staff.Jacqui says the plan focuses on improving cultural responsiveness and building more consistent, integrated and accessible CDS for children across the South Island, particularly Māori families. “Research shows how beneficial early intervention is. Waiting makes it even more stressful for families with children on long waiting lists to see a specialist practitioner. The additional funding is fantastic and will go a long way in helping these children and their families.”
CDS provides community-based early intervention services for children with physical, sensory, intellectual disability, autism, neuro-disabilities, by facilitating their developmental pathway to maximise their potential and support greater independence.
New South Island Service Provides Relief For Kids With Drug Resistant Epilepsy
07 Nov 2019
Zachery Dunn, 4, has drug-resistant epilepsy and his health has been greatly improved through ketogenic dietary therapy. The service has recently been expanded South Island-wide.
After beginning ketogenic dietary therapy (KDT) to control Zachary Dunn’s drug-resistant epileptic seizures two years ago, he went from having four hospital admissions and two helicopter transfers within three months, to a happy four-year-old with greatly reduced seizure frequency and no further admissions.
Zachary’s parents Danielle and Hamish Dunn had trialled five epilepsy medications that did very little to help him. “We were in and out of hospital and the medication doses were increasing, but Zach was still having a lot of seizures at home,” Danielle says. “He also had terrible side effects. It got to the point where he couldn’t move, sleep or feed himself and he was crying inconsolably. His quality of life was pretty poor and it was a really awful, stressful time for us as a family.”
The Dunn family live rurally in Alexandra, Central Otago. They are one of the families being assisted by the South Island Paediatric Ketogenic Dietary Therapy Service, led by Charlene Tan-Smith, South Island Clinical Lead (Ketogenics) and Paediatric and Ketogenic Dietitian, Canterbury DHB. The service, originally only available privately and in Canterbury DHB since 2016, has now expanded to cover all five South Island DHBs as a hub-and-spoke model (with Christchurch Hospital as an online hub).
Zachary’s seizures began when he turned two. Danielle says they had noticed his development was delayed at around one year of age and after his seizures started it was thought that he had a rare, underlying genetic syndrome that was causing the epilepsy. Danielle and Hamish found out about the use of KDT as therapy for refractory epilepsy through an internet search. After researching what was available in New Zealand, they were informed about Charlene’s clinic through another parent in an online epilepsy support group.
Zachary is now solely on KDT to control his epilepsy, after being gradually weaned off the medication he was resistant to. “We were lucky we found Charlene when we did, as Zach was so sick and all our DHB had to offer was more drugs. Many kids with refractory epilepsy spend their life on drug trials without being offered a ketogenic diet trial, while still having seizures and suffering the side effects. And once you’ve exceeded two to three ineffective drug trials, the chances of further trials being effective for controlling seizures falls exponentially, whereas the ketogenic diet – which has been used to treat epilepsy for a century – has a higher success rate.”
Danielle, Hamish and Zachery Dunn, of Alexandra. Photo credit: Emily Kerse Photography
About a third of children with epilepsy will eventually develop refractory epilepsy – meaning medicines don’t work well, or at all, to control the seizures. In the most severe cases, hundreds of seizures can occur each day, impacting on the quality of life of children, parents, siblings, grandparents, schools and the wider community. There has been no improvement in the rate of refractory epilepsy, despite the addition of over 10 new antiepileptic medications to the market in recent years.
KDT is a treatment used internationally for children with refractory epilepsy who don’t respond to anti-epilepsy drugs. It is not to be confused with the fad ‘keto diet’ and must be medically prescribed and monitored. KDT can significantly reduce seizures for some patients, with some even becoming totally seizure-free, says Charlene. “KDT is an evidence-based mainstream treatment, using medical nutritional ketosis to simulate a starvation state and provide the brain with fuel from ketones, rather than glucose from carbohydrates. It’s a very specific, tightly controlled diet. All the components have to be carefully calculated, weighed and measured, which is why it’s registered dietitian-led.”
For children and their families in the South Island who live outside of Christchurch, the service is available remotely via Zoom sessions, email and phone calls. Charlene provides families with the total amounts of fat, protein and carbohydrates their child needs each day and teaches them how to measure each meal and snack, depending on their specific KDT prescription. The family’s lifestyle and food preferences are incorporated into the prescription, which is also carefully adapted as the child grows. Ketone levels are measured at home using a funded blood/glucose monitoring machine and frequent blood tests keep track of nutrition levels to ensure there are no deficiencies.
“It’s a whole new skill we had to learn as parents,” Danielle says. “There’s so much more involved than just dishing out medication a couple of times a day. There’s a lot of effort involved in creating a diet that’s so precise and requires a huge amount of compliance from both the child and the parent. Learning to use the keto calculator to make all the macronutrients in each recipe balanced down to 0.1g took a bit of practice and it has been great to have Charlene’s support to get me up to speed. It’s a big change in lifestyle but parents will go to great lengths to help their sick child become well. The diet is our life saver and it’s so much easier spending some time in the kitchen than living with poorly controlled epilepsy.”
Charlene Tan-Smith, South Island Clinical Lead (Ketogenics) and Paediatric & Ketogenic Dietetian, Canterbury DHB.
Danielle says while the diet itself is a lot of work, the convenience of not having to travel to Christchurch is a huge help. “Once we had initiated the diet we were talking to Charlene every few days, as it takes a while for the ketones to rise and get to a steady state. Now that he is stable, we stay in touch every few weeks. It’s completely feasible to do it all from a distance.”
KDT is a highly specialised service. Charlene trained to become a ketogenic dietitian in Canada and at Matthew’s Friends UK Keto College, and has travelled to hospitals all over the world learning about how different countries use the therapy. She is part of the Ketogenic Dietitian Group in the USA, UK and Canada. “I’m very blessed to have connections with the major keto centres around the world and I’m so excited about our service for the South Island – we want to help as many families as we can.”
The service is not only benefiting patients and their families but is also saving health resources by reducing emergency department admissions and hospital overnight stays. The service was extended South Island-wide in August 2019, after Canterbury DHB put forward a case to the South Island Alliance’s Child Health Service Level Alliance, requesting improved access and equity for patients, no matter where they live in the South Island. The average time a patient may need to be on the diet is between two and five years.
Danielle and Hamish were one of the families who had written letters to the Ministry of Health and Canterbury DHB asking for the service to be offered across the South Island. “Zach has done really well with the diet, which probably helped the case,” says Danielle. “Within two months of starting, his tonic clonic and atonic seizures stopped. Now, he only has focal seizures, which are a lot smaller and usually triggered by illness or when he is really tired. Just to see the difference it’s made in his development is huge. He started walking earlier this year, at three and a half years of age. Obviously, that’s really delayed compared to a healthy child but I don’t think he would have achieved walking with the kind of protocol he was on before, with frequent convulsive seizures and drug side effects.
“His communication is increasing and he is just so much happier within himself. Seeing him smiling and playing again and his character come back is amazing. It’s greatly improved his quality of life and for our family as well, it’s just been massive. Opening the service up across the South Island for other families to benefit from it as we have, is great and definitely a step in the right direction.”