How we help
How we help
At Brain Tumour Support KIDZ, we know that once diagnosed with a brain tumour, children and families feel scared, and isolated. We know that the diagnosis has a huge impact, but you don’t have to go through this alone.
Brain Tumour Support Kidz has developed a range of information and resources for New Zealand families that we hope you find helpful.
Our Online Support Community
Our support communities offer a safe online space where you can connect with others who know what you’re going through.
You’ll find a welcoming community of people who have been there and understand how you feel.
You can ask questions, get support from others and share your own experiences at any time of the day or night – it’s a safe space where you can be totally open. Or you can simply read people’s stories, knowing that there are others right there with you.
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New Brain Box for Kidz!
If you are the parent of a child with a brain tumour, we offer a Brain Box for Kidz. This contains our education guide Supporting students with brain tumours as well as a number of educational toys, puzzles and games for your child.
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Facebook Private Group
Parents connect - a group of parents with children who’ve been diagnosed with a brain tumour, either recently or a longer time ago.
Our aim to provide a safe and supportive space for parents with children who’ve been diagnosed with a brain tumour. It is easy to join… you just need to go to the page and ask to join. -
Support Friends
A Support Friend is a volunteer who has experienced what it is like to care for someone living with a brain tumour. They provide one to one support. They will be able to share their knowledge and insight, and also listen to you, to help you to get through this difficult time. This service is offered to families and whānau who have a child who’s been diagnosed with a brain tumour.
Useful Links
Click on on the drop down arrow for more information
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Your main treatment and health team will usually be at Starship or Christchurch Hospitals at first. Your regional or local hospital may stay involved and see you more after you return home.
KidsHealth NZ
website is a reliable source of child health information for whanau in New Zealand.
https://www.kidshealth.org.nz/
Healthpoint keeps an up to date list of services including for people with brain tumours. It may also list some local services for your area.
http://healthpoint.co.nz/
The High Cost Treatment Pool (HCTP) is funding available for patients requiring high cost treatment or procedures that are not otherwise funded or provided by the public health system in New Zealand. You can find a HCTP pathway here.
https://starship.org.nz/guidelines/high-cost-treatment-pathway/ -
Child Cancer Foundation provides support to children and families on their cancer journey including through a Family Support Coordinator for each newly diagnosed family.
https://childcancer.org.nz/support-for-families
CanTeen provides a wide range of free support services to help families and their children manage the specific challenges they’re dealing with.
https://www.canteen.org.nz
Cancer Society NZ works to help people with cancer and their whānau including through information, counselling, and a range of support services
https://www.cancer.org.nz
Carers NZ supports family carers with a range of services and support including information, carer retreats and support groups
https://carers.net.nz
Frankie to the Rescue supports child palliative care families with practical support including food, parking vouchers, toys and gift packs and contributes to other child cancer resources including our Brain Box for Kidz.
https://www.facebook.com/frankiesrescuecrew
Hospice NZ provides a wraparound service of care to anyone with a life limiting illness. It includes music therapy, a biographer, counselling, spiritual care and physiotherapy and other individualised services.
https://www.hospice.org.nz/
Kenzie’s Gift provides early intervention and mental health support for young Kiwis and their whānau living with serious illness, including cancer or a bereavement in the family. Support includes 1 to 1 therapy, a journey kit for children with cancer and other resource kits and guides
https://kenziesgift.com
Support crew is a free online support platform that coordinates meals and other support from family and friends when dealing with a life changing event
https://www.supportcrew.co
The Tahu Hikuroa Foundation provides practical support for brain tumour patients and their whānau currently through a Prezzy Card
https://tahuhikuroa.org.nz
White Matter Brain Cancer Trust provides financial assistance for activities that help alleviate stress within families and enhance the quality of life of brain cancer patients.
https://whitematterbraincancertrust.nz -
Your child may have additional education support, initially through the Regional Health Schools and then from your local school e.g. from a Special Education Needs Coordinator.
https://www.education.govt.nz/school/student-support/special-education/school-high-health-needs-fund/
Our guide for New Zealand teachers and families called Supporting Students with Brain Tumours is available online here. The booklet is also provided free for families and schools in our Brainbox for Kidz. It has lots of links to online New Zealand resources for strategies to help with specific effects of brain tumours. -
Ministry of Health Carer Support: The principle of Carer Support is to provide full time carers with time to themselves as a break from their full time carer role. This can mean reimbursement of some of the costs of engaging a support person to care and support a disabled person or purchases which provide the disabled person with self-directed entertainment
https://www.workandincome.govt.nz/eligibility/carers/care-child-with-a-disability.html
https://www.tewhatuora.govt.nz/our-health-system/claims-provider-payments-and-entitlements/carer-support-claims#about-carer-support
The National Travel Assistance Scheme helps people financially who are referred by their specialist to see another specialist, and need to travel long distances or travel frequently.
https://www.tewhatuora.govt.nz/our-health-system/hospitals-and-specialist-services/national-travel-assistance/
Work and Income Supported Living Payment is a weekly payment to help you if you have, or are caring for someone with, a significant health condition, injury or disability.
https://www.workandincome.govt.nz/products/a-z-benefits/supported-living-payment.html
Work and Income Caring for a child with a health condition. There are additional benefits that you may be entitled to dependent on your circumstances.
https://www.workandincome.govt.nz/eligibility/carers/care-child-with-a-disability.html -
There are a number of overseas websites with lots of useful and reliable information for families of children with brain tumours.
These include:
The Brain Tumour Charity (a UK website) has lots of information for children and families. They also have a range of animations that explore and explain a variety of subjects for children who are diagnosed with a brain tumour and their family. “Jake Animations for children” can also be found on YouTube.
https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/children-and-families-service/support-families/animations-explaining-brain-tumours
Pediatric Brain Tumour Foundation (USA) provides resources for families.
https://curethekids.org
Imaginary Friend Society is a series developed by them that explains complicated cancer topics in a way that children can understand and that takes “the scare out of cancer care”. These can be accessed by visiting this website:
https://www.imaginaryfriendsociety.com
Little Brains Trust is a UK website that provides lots of age appropriate resources and information.
https://littlebrainstrust.org.uk
The Brain Child Foundation is an Australian website that offers resources and information to families with children diagnosed with a brain tumour.
https://brainchild.org.au
The American Brain Tumor has information specific to childhood brain tumours and an interactive kids’ section (ABTA kids) with appropriately targeted information and support.
https://www.abta.org
