Support with Serious Illness

He nui maunga, e kore
e taea te whakaneke.
He nui ngaru moana,
mā te ihu o te waka e wāhi.

A great mountain cannot be moved.
But the canoe’s bow
can find a way
through the great waves

This directory has been developed to support young people and their loved ones living with a serious illness and those who are receiving end-of-life care. Although hosted on the AYA Cancer Network website, many of these resources and links are also helpful for young people with a serious illness other than cancer. Where applicable, the eligibility criteria for each resource are specified.

Helpful Printables

The following printables were developed alongside two resource booklets for young people;

Ka Whai Awa, Ka Whai Ara: A young person’s guide to living with a serious illness

Mā Tōku Reo e Tohu: A young person’s guide for decision making when dying

Thank you for your offer to help postcard

Reflections template

Letter to my visitors

For those in distress

Lifeline: Call 0800 LIFELINE (0800 543 354) or send a text to HELP (4357) For free confidential support – 24 hours a day, seven days a week.

Samaritans Aotearoa New Zealand offer a day and night caring listening service for all callers.

Skylight Trust Skylight Trust is here to help you through difficult times. They can assist you in a variety of ways with information appropriate for your situation and counselling support services for children, young people, and their whānau who are experiencing tough times.

Aunty Dee is a free online tool for anyone who needs some help working through a problem or problems.

SPARX e-therapy equips young people and rangatahi with life skills to power through stressful and negative emotions.

0800 What’s Up is a safe place for tamariki and rangatahi to talk – about anything! It’s New Zealand’s only national children’s helpline where young people aged 5-19 years old can talk to or chat with a trained counsellor.

Talking to Tamariki

Mana Ake - Stronger for Tomorrow Mana Ake are a Christchurch-based group providing health and wellbeing support for children during challenging times. Their website includes links to useful resources for parents, many of which are relevant to those living anywhere in the country.

A great website to go to for medical information in an easy to understand, child-friendly format.

An organisation supporting people of any age through change, loss, and grief. It provides downloadable information and resources.

Provides information for friends, whānau, and teachers and free counselling for children and young people with a sibling or parent with a life-limiting illness.

Provides support for parents of a young person with cancer aged under 20, and support for their siblings aged 13 and younger

Canteen is a safe space for rangatahi aged 12-24 to connect, share the tough stuff, and get a break from cancer

We provide wraparound support for young people and their families living with cancer in Hawke’s Bay.

Work

Cancer Society - Cancer and insurance, employment and legal issues

Handling Advice

Accepting Help

Lotsa Helping Hands is a digital platform (also an app) where family and friends can create a community to support someone. Functionality includes a shared calendar for tasks (meal delivery, rides, appointments), notifications and reminders, groups to target tasks and messaging, announcements to keep your chosen community updated, and well wishes to provide the patient and their whānau.

The b-there app was developed to help adolescent and young adults with cancer to easily connect with their supporters by sharing updates, managing activities, and requesting needed items. It is free to download on the App Store and Google Play and is suitable for anyone with a serious illness or in need of some extra support.

Hospice & Palliative Care

Hospice provides holistic wrap around care and support for people with a life limiting illness, and their whānau. Everything provided is free of charge.

The Hospice NZ website provides more information and a helpful link to all hospice services around the country.

There are also three charitable palliative care services around the country that specifically provide children and young people and their whānau with support and end-of-life care.

Rainbow Place is located in Hamilton and is the dedicated children's service of Hospice Waikato. It provides specialized palliative care and support for 0-21 year olds in the Waikato region with life-limiting or life-threatening conditions, as well as their whānau. The service offers includes medical care, counselling, respite care, and family support.

Rei Kōtuku provides specialised palliative and bereavement care to children and young people up to 19 years in the Central Region of Aotearoa New Zealand, and their whānau. They are not clinic based and ‘go where the child is’ to support them to get on with living as best they can.

Nurse Maude Paediatric and AYA Palliative Care Service provides end-of-life care and support for children, adolescents, and young adults aged up to 25 years who live in the South Island. Their team focus on the comfort and quality of life of the young person and their whānau. Referrals can be made by any health professional involved in the patient’s care.

'Bucket List' Supports

TimeOut is a New Zealand not-for-profit charity and connects generous holiday homeowners willing to donate a stay in their property to a person diagnosed with an incurable illness. This invaluable opportunity allows whānau and friends to take a much-needed break and spend quality time together.

White Matter Brain Cancer Trust was established to help those facing brain cancer to experience moments of joy, comfort and peace. The application process invites anyone with a brain cancer diagnosis to request something tailored to their personalised needs.

Make A Wish is dedicated to making every eligible person’s wish come true. All New Zealand children and young people aged 3-18 years old battling a critical illness are eligible.

End-of-Life Planning

Go With Grace offers gentle guidance, support and peace of mind for those planning for end-of-life and for people facing the loss of a loved one. Some of the areas they cover are accounting, legalities, insurances, funeral planning and more.

The Citizens Advice Bureau cover topics such as wills, advanced directives, power of attorneys, and more.

Te Hokinga ā Wairua End of Life Service provides clear guidance and tools to help make end-of-life planning easier. The site also supports whānau by guiding them through what to do when a loved one dies and providing information that they can read in advance to help them prepare.

End of Life Doula Alliance Aotearoa is a person or service, offering non-medical, holistic care, to those living with life limiting illness, and those supporting them. They accompany, educate, empower, and advocate for them, as and when needed, in order for them to prepare well for their dying, death and beyond, so that they can live their best life, right up to the end.

Bereavement Support

Any condition:

1737 Free call or text 1737 any time, 24 hours a day to talk or text with a trained counsellor about any type of grief or loss.

Te Hokinga ā Wairua End of Life Service In addition to supporting end-of-life planning, the website contains links to bereavement supports available to whānau when a loved one has died.

Healing Hearts is a private Facebook page of parents and siblings who have experienced the loss of a child. They don't run grief support groups or provide counselling themselves but do help parents connect with others and share resources. Private Facebook Page.

Kenzie’s Gift supports the mental health of tamariki (children) and mātātahi (young people) aged 3-24 years old affected by serious illness or grief. We provide up to 12 fully funded 1-on-1 therapy sessions with registered mental health professionals, support kits and a private Facebook Page.

Coping With Loss There’s no one way to grieve, we know that. But there are ways of thinking and acting that will ease your pain and helplessness.

Grief Centre We provide loss and grief counselling, resources and support groups for youth, adults, families and whānau experiencing any form of significant loss. We also run a professional education and training programme, present at community talks and events, and we partner with funeral homes to provide grief care after funerals.

Bittersweet Siblings Facebook Group and Parents Facebook Group - Bittersweet Siblings is a safe place where you can speak to others who know what it is like to lose such an important part of your future

Grief Relief supports and educates with sound information, stories, tools, skills and strategies for understanding loss and grief, managing self and supporting others.

Support for Specific Conditions

Child Cancer Foundation (note: this is only available for families of children and young adults up to 19 years old) Through the Counselling Project, families can access counselling support in their hometown once children have left their treatment providers (either Starship or CHOC) and throughout the ongoing challenges of childhood cancer. CCF is funding the project as well as covering the cost of counselling sessions for parents and families.

Brain Tumour Support have facebook groups as well as hold online support group meetings for patients and caregivers, one of the support groups is the Bereavement Group - meets on the 1st Tuesday of each month.

BCFNZ funds free sessions; either face-to-face, over the phone or via Skype. Your GP or a member of your breast team can refer you, or complete a self-referral online.

Sweet Louise provides support for incurable breast cancer. Support Line 0800 112 277

We provide wraparound support for young people and their families living with cancer in Hawke’s Bay.

Heart Kids New Zealand Heart children, teens and adults, and their siblings and wider whānau are always welcome.

Muscular Dystrophy New Zealand funds up to three counselling sessions per year to eligible MDANZ members. Counsellors can request more funded sessions which can be considered on a case-by-case basis depending on the need, and available funding. This service is also available for immediate family who have experienced a bereavement.