JOURNEYS Palliative Care for Children and Teenagers

JOURNEYS Resource List JOURNEYS

Palliative Care Australia

PO Box 24 Deakin West ACT 2600 t: 02 6232 4433 f: 02 6232 4434 e: [email protected] w: www.palliativecare.org.au

Download updates of the Journeys Resource List at www.palliativecare.org.au Resource List

Contents

Information, support services, and resources...... 2 Other sources of information and support...... 28 Books...... 28 Audience...... 29

Parents and carers...... 29

Talking to children about dying and death...... 31

Grandparents...... 36

Friends and family...... 36

Teachers...... 37

Topic...... 38

Bereavement support...... 40

Deciding on another child...... 40

Funeral planning...... 40

Helping yourself...... 41

Symptom management...... 41

JOURNEYS Travel and transport transport and Travel

★

Symptom management Symptom

Rights and responsibilities and Rights Respite care Respite

★ Resources Resources

★ ★ Remembering your child your Remembering

★ ★

support Pastoral and spiritual care and and care spiritual and Pastoral

★ Palliative care information information care Palliative

★

support

Multicultural information and and information Multicultural

Medicines

Interpreting and translating translating and Interpreting

Home help Home

Helping your partner or children or partner your Helping Health information and services and information Health

★ ★ ★ Funeral planning Funeral

★ Financial support Financial

★

Equipment Equipment Entertainment

★ End of life decisions life of End

★

Deciding on another child another on Deciding Counselling

★ Complementary treatments Complementary

v ices a n d resources

Community and social support support social and Community Carer support support Carer

★

t ser Bereavement, loss and grief and loss Bereavement,

★ ★

holiday accommodation holiday Accommodation: hospice and and hospice Accommodation:

★

Islander information & support support & information Islander Aboriginal and Torres Strait Strait Torres and Aboriginal ★ ★ opic T pp or ion , su or mat Organisation Organisation or program Aboriginal and Torres Aboriginal and Torres Strait Islander Access Lin e Aboriginal Medical Servic e Angel Flight Australi a Assistance Dogs Australi a for Australian Centre t Grief & Bereavemen Australian Childhood Immunisation Registe r Australian Community of Child Photographer s Australian Counselling Associatio n Australian Funeral Associatio n Directors Donor Australian Organ Registe r Bear Cottag e I n f

Resource List

Travel and transport transport and Travel

Symptom management Symptom Rights and responsibilities and Rights

★

Respite care Respite Resources Resources

★ ★ ★ ★ ★ Remembering your child your Remembering

★

support

Pastoral and spiritual care and and care spiritual and Pastoral Palliative care information information care Palliative

★ ★ ★ ★

support Multicultural information and and information Multicultural

★ ★ ★ ★ ★

Medicines

Interpreting and translating translating and Interpreting

Home help Home Helping your partner or children or partner your Helping

★ ★ Health information and services and information Health

★ ★ ★ ★ Funeral planning Funeral

★ Financial support Financial

★

Equipment Equipment Entertainment

★ ★

End of life decisions life of End Deciding on another child another on Deciding

★ Counselling

★ ★ ★ ★ Complementary treatments Complementary

★ ★ Community and social support support social and Community

★ ★ ★ Carer support support Carer

★ Bereavement, loss and grief and loss Bereavement,

★ ★ ★ ★ ★ ★

holiday accommodation holiday

Accommodation: hospice and and hospice Accommodation:

Islander information & support support & information Islander Aboriginal and Torres Strait Strait Torres and Aboriginal ★ ★ ★ opic T e Organisation Organisation or program Bereavement Care Care Bereavement Centr Info and Bereavement Referral Servic e Better Healt h Camp Qualit y Cancer Council Australi a Cantee n Australia/ Carers Carers Association s h CareSearc for Genetics Centre Education for Palliative Centre and Research Care Educatio n k Centrelin Cochrane Collaboratio n

JOURNEYS

Travel and transport transport and Travel

Symptom management Symptom Rights and responsibilities and Rights

★ ★ Respite care Respite

★ Resources Resources

★ ★ ★ ★ ★

Remembering your child your Remembering

support

Pastoral and spiritual care and and care spiritual and Pastoral Palliative care information information care Palliative

★

support Multicultural information and and information Multicultural

★ ★ Medicines

★

Interpreting and translating translating and Interpreting Home help Home

★

Helping your partner or children or partner your Helping Health information and services and information Health

★ ★ ★ ★ ★ Funeral planning Funeral

★ Financial support Financial

★

Equipment Equipment Entertainment

v ices a n d resources End of life decisions life of End

★ ★ Deciding on another child another on Deciding

t ser Counselling

★ ★ Complementary treatments Complementary

★ Community and social support support social and Community

★ ★ ★ ★ Carer support support Carer

★ ★ Bereavement, loss and grief and loss Bereavement,

★ ★ ★ ★ ★

holiday accommodation holiday

Accommodation: hospice and and hospice Accommodation:

pp or ion , su or mat support & information Islander Aboriginal and Torres Strait Strait Torres and Aboriginal ★ opic T Organisation Organisation or program Commonwealth Carer Commonwealth Carer s Centre Resource Commonwealth Respite s Centre and Carelink Compassionate Friend s Consumers Health Forum of Australi a DonateLife ™ Dougy Center Education department s Good Grie f GriefLin k Australi a healthdirect HealthInsit e Health Ombudsma n J ourneys - I n f

Resource List Travel and transport transport and Travel

★ ★ ★ Symptom management Symptom

★

Rights and responsibilities and Rights Respite care Respite

★ Resources Resources

★ ★ ★ Remembering your child your Remembering

★

support

Pastoral and spiritual care and and care spiritual and Pastoral Palliative care information information care Palliative

★

support Multicultural information and and information Multicultural

★ Medicines

★ ★

Interpreting and translating translating and Interpreting Home help Home

★ ★ Helping your partner or children or partner your Helping

★ ★ Health information and services and information Health

★ ★

Funeral planning Funeral Financial support Financial

★ ★ Equipment Equipment

★ ★ Entertainment

★

End of life decisions life of End

Deciding on another child another on Deciding Counselling

★ ★ ★ ★ Complementary treatments Complementary

★ Community and social support support social and Community

★ Carer support support Carer

★ Bereavement, loss and grief and loss Bereavement,

★ ★

holiday accommodation holiday

Accommodation: hospice and and hospice Accommodation:

Islander information & support support & information Islander Aboriginal and Torres Strait Strait Torres and Aboriginal ★ ★ opic T e e Organisation Organisation or program Home and Community m Progra Care Independent Living s Centre IDEA S Just Better Car Kids Helplin e Leukaemia Foundatio n Life Catcher s Lifelin e Make-A-Wish Foundatio n Medicar Medicines Line Medline Plu s MensLine Australi a Multicultural Development Associatio n

JOURNEYS

Travel and transport transport and Travel

Symptom management Symptom

Rights and responsibilities and Rights

Respite care Respite Resources Resources

★ ★ ★ ★

Remembering your child your Remembering

support

Pastoral and spiritual care and and care spiritual and Pastoral Palliative care information information care Palliative

★ ★

support Multicultural information and and information Multicultural

★ ★ Medicines

★ ★ Interpreting and translating translating and Interpreting

★

Home help Home Helping your partner or children or partner your Helping

★ Health information and services and information Health

★ ★ ★ ★ ★

Funeral planning Funeral

Financial support Financial

Equipment Equipment Entertainment

v ices a n d resources

End of life decisions life of End Deciding on another child another on Deciding

t ser Counselling

★ ★ ★ Complementary treatments Complementary

★ Community and social support support social and Community

★ Carer support support Carer

★ ★ Bereavement, loss and grief and loss Bereavement,

★ ★ ★

holiday accommodation holiday

Accommodation: hospice and and hospice Accommodation:

pp or ion , su or mat support & information Islander Aboriginal and Torres Strait Strait Torres and Aboriginal ★ opic T Organisation Organisation or program Muscular Dystrophy Muscular Dystrophy Australi a myD r NACCH O National Association for Loss and Grie f National Carer m Counselling Progra for National Centre Childhood Grie f National Center for Complementary and Alternative Medicine s National Palliative Care y Service Director National Prescribing Servic e National Relay Servic e National Tay-Sachs & Allied Diseases Associatio n NSW Multicultural Health Communication Servic e J ourneys - I n f

Resource List Travel and transport transport and Travel

★ Symptom management Symptom

★ ★ Rights and responsibilities and Rights

★ ★

Respite care Respite Resources Resources

★ ★ ★ ★ ★ ★ ★ ★

Remembering your child your Remembering

support Pastoral and spiritual care and and care spiritual and Pastoral

★ Palliative care information information care Palliative

★ ★ ★ ★

support Multicultural information and and information Multicultural

★ ★ ★ Medicines

★

Interpreting and translating translating and Interpreting

Home help Home Helping your partner or children or partner your Helping

★ ★ ★ Health information and services and information Health

★ ★

Funeral planning Funeral Financial support Financial

★ ★ Equipment Equipment

★

Entertainment End of life decisions life of End

★ ★

Deciding on another child another on Deciding Counselling

★ ★ ★ ★ ★ Complementary treatments Complementary

★ ★ Community and social support support social and Community

★ ★ Carer support support Carer

★ ★ Bereavement, loss and grief and loss Bereavement,

★ ★ ★ ★ ★

holiday accommodation holiday

Accommodation: hospice and and hospice Accommodation:

Islander information & support support & information Islander Aboriginal and Torres Strait Strait Torres and Aboriginal ★ opic T Organisation Organisation or program Office of Complementary Medicine s and TissueOrgan Authorit y Australia Palliative Care (PCA ) PCA member organisations Paediatric palliative care service s Palliative Care Information Servic e S A Parenting Patient Assisted Travel Scheme s Pharmaceutical Benefits Schem e of Appliances Program for Disabled Peopl e Psychotherapy and Counselling Federatio n Redkit e Relationships Australi a

JOURNEYS Travel and transport transport and Travel

★

Symptom management Symptom

Rights and responsibilities and Rights Respite care Respite

★ ★ Resources Resources

★ ★ ★ Remembering your child your Remembering

★ ★ ★ ★

support Pastoral and spiritual care and and care spiritual and Pastoral

★

Palliative care information information care Palliative

support Multicultural information and and information Multicultural

★ Medicines

★ Interpreting and translating translating and Interpreting

★

Home help Home Helping your partner or children or partner your Helping

★ ★ ★

Health information and services and information Health

Funeral planning Funeral

Financial support Financial

Equipment Equipment Entertainment

★ v ices a n d resources

End of life decisions life of End Deciding on another child another on Deciding

★ t ser Counselling

★ ★ ★ ★ Complementary treatments Complementary

★ Community and social support support social and Community

★ ★ ★ Carer support support Carer

★ ★ Bereavement, loss and grief and loss Bereavement,

★ ★ ★ ★

holiday accommodation holiday Accommodation: hospice and and hospice Accommodation:

★ ★

pp or ion , su or mat support & information Islander Aboriginal and Torres Strait Strait Torres and Aboriginal opic T Organisation Organisation or program Remembering Sit e Ronald McDonald House Charitie s Siblings Australi a SIDS and Kid s Starlight Children’s Foundation Stillbirth & Neonatal Death Support Love Clu b Teddy Therapeutic Goods Administratio n TLC for Kid s and Translating Servic e Interpreting Authorit y Transport s Toe Twinkle Special Kid s Very J ourneys - I n f

8 Resource List

Information, support services and resources

Aboriginal and Torres Strait Australian Centre for Grief Islander Access Line and Bereavement t: 1800 556 955 Provides information on grief support for all ages and carries a number of publications in its library See Medicare below for further information and bookshop.

t: 1800 642 066 Aboriginal Medical Service (AMS) t: 03 9265 2100 f: 03 9265 2150 See National Aboriginal Community Controlled e: [email protected] Health Organisation w: www.grief.org.au p: McCulloch House, Monash Medical Centre, Angel Flight Australia 246 Clayton Rd, Clayton VIC 3168 A charity that co-ordinates non emergency flights for financially and medically needy people. All flights Australian Childhood are free and may involve patients or compassionate carers travelling to or from medical facilities Immunisation Register anywhere in Australia. A national register administered by Medicare Australia. It records details of vaccinations given t: 1300 726 567 (toll free) to children under seven years of age who live in t: 07 3620 8300 Australia. Its hotline provides information about f: 07 3852 6646 your child’s immunisation status. e: [email protected] w: www.angelflight.org.au t: 1800 653 809 p: PO Box 1201, Fortitude Valley QLD 4006 TTY*: 1800 552 152 (hearing impaired) TIS: 131 450 (Translating and Interpreting Service) e: [email protected] Assistance Dogs Australia w: http://doiop.com/acir Provides information about assistance dogs and their availability in your area. Assistance Dogs aims Download a copy of the ACIR information to deliver freedom and independence to people sheet [PDF, 137Kb] with physical disabilities. http://doiop.com/acirsheet t: 1800 688 364 or 02 9548 3355 For information about childhood immunisation e: [email protected] visit the Department of Health and Ageing’s w: www.assistancedogs.org.au w: www.immunise.health.gov.au or call the p: PO Box 455, Engadine NSW 2233 immunisation infoline: 1800 671 811

* What is a TTY? A TTY is a special device, also known as a teletypewriter or a textphone, that lets people who are deaf, hearing impaired, or speech-impaired use the telephone to communicate, by allowing them to type messages back and forth to one another instead of talking and listening. For further information contact the National Relay Service.

9 JOURNEYS

Australian Community Australian Organ Donor Register of Child Photographers Records patient consent details. It also contains a frequently asked questions section which briefly Dedicated to giving the gift of photographic explains when organ and tissue donation can occur. memories to families who have children with serious and terminal illnesses. The ACOCP is t: 1800 777 203 a volunteer organisation of child photographers e: [email protected] from all over Australia who have come together w: http://doiop.com/aodr to provide this gift to families in a caring, For more information about any aspect of organ compassionate and heartfelt manner. ACOCP and tissue donation you can contact any of the understands time is crucial in some cases and following organisations: is available to call 24 hours a day, 7 days a week. Kidney Health Australia e: [email protected] w: www.acocp.org.au t: 1800 682 531 e: [email protected] Australian Counselling Association w: www.kidney.org.au Provides an online directory of accredited HealthInsite counsellors and psychotherapists in Australia, Reliable information about organ donation including specialists in grief counselling. and other health topics. For contact details see HealthInsite. t: 07 3356 4255 t: 1300 784 333 ACT - DonateLife™ f: 07 3356 4709 e: [email protected] t: 02 6244 3071 w: www.theaca.net.au f: 02 6244 2405 p: PO Box 88, Grange QLD 4051 w: www.donatelife.gov.au p: Canberra Hospital, Yamba Drive, Garran ACT 2605

Australian Funeral Directors NSW Organ & Tissue Donation Service Association t: 02 8566 1700 f: 02 8566 1755 Can provide information on how to arrange a w: www.donatelife.gov.au funeral and contact details for accredited funeral p: PO Box 486, Kogarah NSW service providers. It also produces a booklet entitled: When a baby has died. NT - DonateLife™ t: 1300 888 188 (advice line for enquiries) t: 08 8922 8349 t: 03 9859 9966 f: 08 8944 8096 f: 03 9819 7390 w: www.donatelife.gov.au e: [email protected] p: Royal Darwin Hospital, 1st Floor Rocklands w: www.afda.org.au Drive,Tiwi NT 0810 p: PO Box 291, Kew East VIC 3102

10 Resource List

QLD - DonateLife™ Bereavement Care Centre t: 07 3240 2350 f: 07 3240 2999 The centre offers bereavement counselling and a w: www.donatelife.gov.au range of resources and information for bereaved p: Princess Alexandra Hospital, Level 4, Ipswich Rd, adults and children. Woolloongabba QLD 4102 t: 1300 654 556 e: [email protected] SA - DonateLife™ w: www.bereavementcare.com.au t: 08 8207 7117 p: PO Box 835, Wyong NSW 2259 f: 08 8207 7102 w: www.donatelife.gov.au p: Level 6, 45 Grenfell Street, Adelaide SA 5000 Bereavement Information and Referral Service TAS - DonateLife™ This service provides information and referral t: 03 6270 2209 assistance to members of the general public who need f: 03 6270 2223 information on bereavement services available within w: www.donatelife.gov.au Victoria. The service can also provide information on p: GPO 1236, Hobart TAS 7001 bereavement related issues. The service is unable to provide telephone bereavement counselling to callers. VIC - DonateLife™ t: 03 8317 7400 t: 1300 664 786 f: 03 9349 2730 w: www.donatelife.gov.au Better Health p: 538 Swanston Street, Carlton VIC 3053 A website funded by the Victorian Government to provide the community with access to online health WA - DonateLife™ related information. It has a section on funerals with t: 08 9222 0222 a summary of the issues to consider when planning f: 08 9222 0220 a funeral. Its brochure Funerals - some issues w: www.donatelife.gov.au explained is available through its website. p: 6th Floor, Albert Facey House, 469 Wellington Street, Perth WA 6000 t: 1800 126 637 f: 03 9616 2845 See also Organ and Tissue Authority below w: www.betterhealth.vic.gov.au p: GPO Box 4057, Melbourne VIC 3001 Bear Cottage A hospice in New South Wales. It is a place where Camp Quality children with a terminal condition and their families can A non-profit organisation committed to bringing stay for respite care or end-of-life care in a home-like hope and happiness to children living with cancer, environment. Bear Cottage is located in Manly, Sydney, their families and communities through recreational, and takes referrals from throughout New South Wales. educational and support programs. t: 02 9976 8300 t: 02 9876 0500 f: 02 9976 8303 t: 1300 662 267 (for your nearest office) e: [email protected] f: 02 9869 0688 w: www.bearcottage.chw.edu.au e: [email protected] p: PO Box 2500, Manly NSW 1655 w: www.campquality.org.au p: Suite 6, 44–46 Oxford Street, Epping, NSW 2121

11 JOURNEYS

Cancer Council Australia Canteen A national non-government organisation which A national support organisation for young people works to prevent cancer and reduce illness, aged 12–24 years living with cancer, and their families. disability and death caused by cancer. The council can provide information on cancer, links to patient t: 1800 226 833 (for your nearest office) support organisations and specialists, and the f: 02 9299 6322 Cancer Council Helpline (see below). The council e: [email protected] has member organisations in each state and w: www.canteen.org.au territory. To find your local office visit its website. p: PO Box 3821, Sydney NSW 2001 t: 02 8063 4100 f: 02 8063 4101 Carers Australia/ e: [email protected] Carers Associations w: www.cancer.org.au Carers Australia is a not-for-profit national p: GPO Box 4708, Sydney NSW 2001 organisation which provides carers with information and education resources. Several of its resources Cancer Council Helpline are available in different languages. For family carer support and counselling contact your state A free, confidential telephone information and or territory Carers Association. support service run by Cancer Councils in each state and territory. Specially trained staff are available t: 1800 242 636 (to access your local Association) to answer your questions about cancer and offer t: 02 6122 9900 emotional or practical support. The helpline can f: 02 6122 9999 provide callers with links to cancer support groups e: [email protected] and other community resources. w: www.carersaustralia.com.au p: Unit 1, 16 Napier Close, Deakin ACT 2600 t: 13 11 20 (8.30 am – 6 pm Monday - Friday)

The Cancer Council Helpline is available in See also Commonwealth Carer Resource Centres languages other than English through the Multilingual Cancer Information Line. Callers can CareSearch listen to cancer information recorded in their own An online resource providing access to evidence- language. They can also connect to a cancer nurse, based palliative care information and resources. assisted by an interpreter. Languages and numbers The CareSearch website also provides information are listed below: and resources about palliative care for Indigenous Arabic 9209 0160 Australians and information on state and national organisations involved in Aboriginal health. Cantonese 9209 0161 w: www.caresearch.com.au Greek 9209 0162 Italian 9209 0163 Centre for Genetics Education Mandarin 9209 0164 Information on specialist services, genetic Polish 9209 0165 counselling and prenatal diagnosis. The centre hosts a directory to help you find the closest genetic Russian 9209 0166 counselling unit. Spanish 9209 0167 t: 02 9926 7324 Vietnamese 9209 0168 f: 02 9906 7529 Other languages 9209 0169 e: [email protected] w: www.genetics.com.au p: PO Box 317, St Leonards NSW 1590

12 Resource List

Centrelink Multicultural Services can help if you Centre for Palliative Care need information in your own language, including free interpreter services for interviews and free Research and Education translation of documents relating to Centrelink The centre offers information on palliative care, business. Centrelink Multilingual Call also allows including definitions and/or words used in palliative you to speak to Centrelink in your own language. care. It also has a frequently asked questions section This is not an interpreter service. You can call this and information on who can help. service to have your questions answered directly by Centrelink employees in your own language. Service t: 07 3636 1449 in some languages is available by returning your call. f: 07 3636 7942 t: 13 12 02 e: [email protected] w: www.centrelink.gov.au w: http://doiop.com/cpcre p: Royal Brisbane and Women’s Hospital, Post Office, Herston QLD 4029 Cochrane Collaboration An international not-for-profit organisation which Centrelink offers up-to-date information about the effects of healthcare through evidence-based healthcare Provides information on how best to access a range databases. However the information is highly of Australian Government programs for financial technical in clinical detail and advice from a care support. As a carer you may be eligible for a number team member may be required. of payments and services. w: www.cochrane.org w: www.centrelink.gov.au

Enquiries about carer payment and carer allowance t: 13 27 17 Commonwealth Carer w: http://doiop.com/caring Resource Centres Operated by Carers Associations in each state and Services for people with additional needs territory of Australia. They provide professional TTY: 1800 552 152 (hearing and speech impaired) counselling, specialist advice and information.

Translating and Interpreting Service t: 1800 242 636 TIS: 131 450 (local call rate) w: www.carersaustralia.com.au (for contact details of Carer Associations in each Foreign language support and brochures are state and territory) available at www.medicare.gov.au A free Carer Support Kit is available in English and Centrelink Indigenous Call Centre 13 other languages. It provides practical information to support carers. An Aboriginal and Torres Strait Indigenous Australians living in regional and remote Islanders Carers Kit is also available. Kits can be areas can talk about Centrelink payments and services. obtained by: t: 13 63 80 1. Phoning the Aged Care Information Line Centrelink’s Indigenous Australians section of its on 1800 500 853 website has information on the Indigenous Call 2. Phoning National Mailing and Marketing Centre and Indigenous specialist officers and on on (02) 6269 1080 Indigenous publications and programs. w: http://doiop.com/indigenous 3. Visiting the Aged Care Publications website at http://doiop.com/ccrcorder

An Order form for the Packs in all listed languages is also available (pages 3 & 4 of the order form) at http://doiop.com/freepubs

See also Carers Australia

13 JOURNEYS

Commonwealth Respite DonateLife™ and Carelink Centres A national network of organ and tissue donation agencies. For contact details see under Australian Provide a single point of contact for carers seeking Organ Donor Register. information and advice about centres for respite services and support. These centres are run by a wide variety of community organisations across Australia. Dougy Center for Grieving t: 1800 052 222 (during business hours) Children and Families t: 1800 059 059 (for emergency respite Based in the USA, the centre produces a number of supportoutside standard business hours) publications on grieving. It also provides a check list TTY: 1800 555 677 and ask for 1800 052 222 for teachers and schools on helping grieving children. Speech-to-speech relay: 1800 555 727 and ask for 1800 052 222 w: www.dougy.org Translating and Interpreting Service: 13 14 50 The centre’s online support community connects e: [email protected] teens, young adults and their families who are w: www9.health.gov.au/ccsd grieving a death for support and inspiration. w: www.carersaustralia.com.au (for contact details of the Network of Carer w: www.inspire.com/groups/the-dougy-center Associations in each state and territory) Education departments Compassionate Friends Home and distance education programs and Offers self-help support to families after the death resources are available to support families that of a child. They also offer advice and information to choose to educate their child at home. Advice is relatives, friends and professionals who are helping available through the education department in each the family. Their website provides links to other state and territory (contact details are available in organisations that may be able to help. the White Pages® under the Business & Government Listings pages). Compassionate Friends of Western Australia Inc t: 1800 628 118 An example of the education resources available can t: 08 9486 8711 be found at: www.education.qld.gov.au/library/resource f: 08 9486 1299 e: [email protected] Other webites: w: www.compassionatefriendswa.org.au w: www.curriculum.edu.au p: City West Lotteries House, 2 Delhi Street, w: www.home-ed.vic.edu.au West Perth WA 6005 Hospitals may offer specialised hospital school programs to assist your child in their education. Consumers Health Forum of Australia Contact your care team or social worker for Can provide information and tips for consumers information and advice. about how to test information for its accuracy and credibility and about consumer rights and responsibilities in health care. Good Grief Has a Seasons for growth program for children, t: 02 6273 5444 young people or adults who have experienced f: 02 6273 5888 significant change or loss. It delivers a range of e: [email protected] services, including activities for primary and high w: www.chf.org.au school students, as well as adults. This program is w: www.chf.org.au/information-papers.php available in a number of areas. Information can be (for information papers) p: PO Box 3099, Manuka ACT 2603

14 Resource List

obtained by contacting the Seasons for Growth office or referring to the website. Health Ombudsman The Health Ombudsman in each state and territory can t: 02 8912 2700 provide information about how to make a complaint f: 02 9923 1655 about a health service or health care provider. e: [email protected] w: www.goodgrief.org.au Australian Capital Territory p: PO Box 1023, North Sydney NSW 2059 ACT Community and Health Services Complaints Commissioner GriefLink t: 02 6205 2222 A resource on death-related grief for all ages. TTY: 02 6205 1666 It provides information on resources (including Translating and Interpreting Service: 131 450 books and videos), bereavement services, e: [email protected] educational activities and courses, and information w: www.hrc.act.gov.au on other grief-related organisations. New South Wales e: [email protected] Health Care Complaints Commission w: www.grieflink.asn.au t: 1800 043 159 TTY: 02 9219 7555 (for the hearing impaired) healthdirect Australia e: [email protected] A free 24-hour telephone health advice line staffed w: www.hccc.nsw.gov.au by registered nurses to provide expert health advice. It is currently available to residents of the Australian Northern Territory Capital Territory, New South Wales, the Northern Commissioner for Health and Community Territory, Tasmania, South Australia and Western Services Complaints Commission Australia and is scheduled to be a fully national t: 1800 806 380 service by 2011. e: [email protected] w: www.hcscc.nt.gov.au t: 1800 022 222 w: www.healthdirect.org.au Queensland Health Quality and Complaints HealthInsite Commission Offers easy access to up-to-date and quality t: 1800 077 308 (toll free outside Brisbane) information about all health subjects including TTY: 07 3120 5997 access to information on complementary or e: [email protected] alternative therapies and medicines. HealthInsite is w: www.hqcc.qld.gov.au an Australian Government initiative funded by the Department of Health and Ageing. It cannot provide South Australia advice about individual medical cases. The SA Ombudsman w: www.healthinsite.gov.au t: 1800 182 150 e: [email protected] For advice about individual medical cases contact w: www.ombudsman.sa.gov.au your health professional or the healthdirect Australia telephone health advice line on 1800 022 222. Tasmania Health Complaints Commissioner See healthdirect Australia t: 1800 001 170 (Free call) e: [email protected] w: www.healthcomplaints.tas.gov.au

15 JOURNEYS

Victoria Queensland Office of the Health Services Disability Services Queensland Commissioner t: 1800 177 120 (toll-free within Australia) t: 1800 136 066 TTY: 07 3896 3471 or 1800 010 222 TTY: 1300 550 275 (for the hearing impaired) (toll-free within Australia) e: [email protected] e: [email protected] w: www.health.vic.gov.au/hsc w: www.disability.qld.gov.au p: HACC Unit, Citilink Business Centre, Western Australia Building 1, Floor 2, 153 Campbell Street, The Office of Health Review BOWEN HILLS QLD 4006 t: 1800 813 583 TTY: 08 9323 0616 South Australia e: [email protected] Department of Human Services w: www.healthreview.wa.gov.au t: 08 8207 0522 e: [email protected] w: www.familiesandcommunities.sa.gov.au Home and Community Care (Department for Families and Communities) (HACC) Program p: PO Box 70, Rundle Mall, Adelaide SA 5000 A joint Australian, state and territory government initiative. The Program provides services such Tasmania as domestic assistance, personal care as well as Department of Health and Human Services professional allied health care and nursing services, t: 03 6233 3185 to support older Australians, younger people with a w: www.dhhs.tas.gov.au/hacc disability and their carers to be more independent at p: GPO Box 125, Hobart TAS 7001 home and in the community and to reduce the potential or inappropriate need for admission to residential care. Victoria Department of Human Services t: 02 6289 8464 t: 03 9096 8692 e: [email protected] w: www.health.vic.gov.au/hacc p: GPO Box 4057, Melbourne VIC 3001 Australian Capital Territory ACT Health Western Australia t: 02 6207 8734 Department of Health w: www.health.act.gov.au/c/health t: 08 9222 4060 p: GPO Box 825, Canberra ACT 2601 w: www.health.wa.gov.au/hacc/home p: PO Box 8172, Perth Business Centre, New South Wales Perth WA 6849 Department of Ageing, Disability and Home Care t: 02 8270 2000 Immunisation Register TTY: 02 8270 2167 w: http://doiop.com/homecareservice See Australian Childhood Immunisation Register p: Level 5, 83 Clarence Street, Sydney NSW 2000

Northern Territory Department of Health and Community Services t: 08 8999 2400 w: http://doiop.com/hacc p: PO Box 40596, Darwin NT 0811

16 Resource List

Independent Living Centres (ILC) Victoria t: 1300 885 886 (service not available to mobile Provide access to information and advice on phone users) medical equipment and consumables (searchable t: 03 9362 6111 database of products and equipment) through the TTY: 03 9314 9001 ILC network. Local centres are able to advise on f: 03 9314 9825 programs for funding support. e: [email protected] ILC Infoline w: www.yooralla.com.au t: 1300 885 886 (You will be connected to your local Western Australia state/territory ILC for the cost of a local phone call. Independent Living Centre of Western NT callers are automatically directed to ILC at SA) Australia w: www.ilcaustralia.org.au t: 1300 885 886 (service not available to mobile phone users) Australian Capital Territory t: 08 9381 0600 t: 02 6205 1900 f: 08 9381 0611 f: 02 6205 1906 e: [email protected] e: [email protected] w: www.ilc.com.au w: www.health.act.gov.au/ilc

New South Wales Information on Disability & Education t: 1300 885 886 Awareness Services Inc (IDEAS) t: 02 9890 0940 A not-for-profit organisation that offers information f: 02 9890 0966 services and products for people with a disability, e: [email protected] their families and carers. It has resources and fact w: www.ilcnsw.asn.au sheets on disability and a database of information on disability services, equipment suppliers and Queensland accessible travel. LifeTech Queensland t: 1800 029 904 t: 07 3552 9000 t: 02 6947 3377 t: 1300 885 886 TTY: 02 6947 3377 f: 07 3552 9088 f: 02 6947 3723 e: [email protected] e: [email protected] (Information Officer) w: www.lifetech.org.au w: www.ideas.org.au p: PO Box 786, Tumut, NSW 2720 South Australia If you need an interpreter please call the Translating t: 1300 885 886 and Interpreting Service (TIS) on 131 450 and ask t: 08 8266 5260 them contact IDEAS on 1800 029 904 between f: 08 8266 5263 9:00 am and 5:00 pm. e: [email protected] w: www.disability.sa.gov.au See also National Relay Service t: 133 677 Tasmania t: 03 6334 5899 f: 03 6334 0045 e: [email protected] Interpreting Service w: www.ilctas.asn.au Provides 24-hour access to interpreter services. t: 131 450

See Translating and Interpreting Service (TIS)

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Just Better Care Life Catchers A network of locally owned agencies offering a Provides ideas on electronically storing photographs range of services including palliative care, nursing, in a variety of formats, such as PowerPoint slides and medication and wound care, domestic assistance, on DVDs. transportation, and meal preparation. They also offer respite care. Staff include community care workers, t: 02 6554 1960 enrolled nurses and registered nurses. They operate e: [email protected] in the Sydney metropolitan area, regional New South w: www.lifecatchers.com.au Wales, Queensland and Australian Capital Territory. p: 3736 Wallanbah Rd, Nabiac NSW 2312 t: 1300 587 823 The Life Catchers website is just one example of w: www.justbettercare.com.au the services available in this area. You can contact your local supplier through the Yellow Pages® telephone directory under photographic storage Kids Helpline or a similar term. Provides anonymous, confidential telephone, email Information on storing and preserving photographs and web counselling for young people aged from is also available from the Australian Institute of 5 to 18 years, 24 hours a day, seven days a week. Aboriginal and Torres Strait Islander Studies (AIATSIS) t: 1800 55 1800 (counselling line) w: www.aiatsis.gov.au/collections/advice.html t: 07 3369 1588 e: [email protected] w: www.kidshelp.com.au Lifeline p: PO Box 2000, Milton QLD 4064 Provides free telephone counselling and support services to people of all ages, 24 hours a day, seven Leukaemia Foundation days a week. The counselling line is staffed by trained volunteer telephone counsellors. A national not-for-profit organisation dedicated to the care and cure of patients and families t: 13 11 14 (counselling line) living with leukaemia, lymphomas, myeloma and t: 02 6215 9400 related blood disorders. The foundation provides w: www.lifeline.org.au practical care and support to patients as well as p: PO Box 173, Deakin ACT 2600 undertaking research. t: 1800 620 420 (for your nearest Foundation office) Make-A-Wish Foundation t: 07 3866 4000 f: 07 3866 4011 of Australia e: [email protected] A wish granting organisation which works to grant w: www.leukaemia.org.au the wishes of children with a terminal condition. p: GPO Box 9954 in your capital city t: 1800 032 260 (for your nearest office) t: 03 9426 0777 f: 03 9426 0799 e: [email protected] w: www.makeawish.org.au

18 Resource List

Medicare Australia MensLine Australia Provides access to subsidised health care programs The national telephone support, information and for Australians. It provides access to general referral service for men with family and relationship practice, specialists, radiology, pathology and concerns. The service is staffed by paid professional optometrists services. If your family needs a lot of counsellors, experienced in men’s issues. It also medicines in a year, its Safety Net helps you with offers resources and a database of men’s services the cost of medicines. Medicare also has a range throughout Australia. of multilingual information sheets. t: 1300 78 99 78 (24 hour support line) Medicare Public Enquiries Line e: [email protected] t: 132 011 (available during business hours) w: www.menslineaus.org.au e: [email protected] w: www.medicare.gov.au Multicultural Development Aboriginal and Torres Strait Islander Access Line Talk with your Indigenous health care worker to be Association certain you and your family are fully registered and Promotes multiculturalism and provides services ready to receive any benefits. in the areas of settlement support, community t: 1800 556 955 development and advocacy. Medicare customers in Northern Australia can access t: 07 3337 5400 Medicare Australia information and support via the e: [email protected] Centrelink Indigenous Call Centre. w: www.mdainc.org.au t: 13 63 80 p: 512 Stanley St, South Brisbane QLD See also Pharmaceutical Benefits Scheme Muscular Dystrophy Australia Medicines Line Offers information and support to sufferers of Provides consumers with access to independent, muscular dystrophy and their families. accurate and up-to-date information about t: 1800 656 632 prescription, over-the-counter and complementary t: 03 9320 9555 medicines. The information is provided by f: 03 9320 9595 experienced medicines information specialists and e: [email protected] clinical pharmacists. w: www.mda.org.au t: 1300 633 424 p: 111 Boundary Road, North Melbourne VIC 3051 (Monday to Friday 9am-5pm, AEST) w: http://doiop.com/medicines myDr You can also ask your pharmacist for information An Australian health care website providing health about medicines. information, articles and items of interest about a wide variety of diseases and conditions, tests and treatments, health and fitness issues, and MedlinePlus medications. It also has listings of health support Directs you to information to help answer health groups and allows you to search for a health questions. MedlinePlus brings together authoritative professional in your area using several criteria, information and has extensive information about including specialty and gender. medicines. w: www.mydr.com.au w: www.nlm.nih.gov/medlineplus

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National Aboriginal Community National Centre for Childhood Grief Controlled Health Organisation Offers support in a safe place where children grieving a death can share their experience as they (NACCHO) learn to live with its impact on their lives. The centre The national peak Aboriginal health body also offers education and training for individuals, representing Aboriginal Community Controlled schools and other organisations handling the grief Health Services throughout Australia. An Aboriginal of children and young people. Medical Service (AMS) is a primary health care t: 1300 654 556 service initiated and operated by local Aboriginal e: [email protected] community to deliver holistic, comprehensive and w: www.childhoodgrief.org.au culturally appropriate health care to the community p: PO Box 327, Epping NSW 1710 which controls it. To find an Indigenous health worker through an AMS contact NACCHO. t: 02 6248 0644 National Center for Complementary f: 02 6248 0744 and Alternative Medicines e: [email protected] or [email protected] The centre is a US-Government agency which (for further information on NACCHO) provides information about complementary and w: www.naccho.org.au alternative treatments particularly in regard to the p: PO Box 5120, Braddon ACT 2612 evidence that supports their use for specific health purposes. Information on this site is not intended National Association to substitute the medical expertise and advice of your care team. The site can be searched by medical for Loss and Grief condition and name of treatment. Runs a national telephone information and referral e: [email protected] service for people of all ages. The association also w: www.nccam.nih.gov accredits loss and grief counsellors.

National Association for Loss National Palliative Care and Grief (Vic) t: 03 9650 3000 Service Directory f: 03 9650 5777 Contains information about specialist palliative care e: [email protected] services, primary care services and other community w: www.nalagvic.org.au support services. Searches can be conducted by p: Suite 4, Level 1, 182 Victoria Parade, postcode or type of service. East Melbourne VIC 3002 w: www.palliativecare.org.au

See page 22 for a list of dedicated paediatric National Carer Counselling Program palliative care services. The Program is delivered by Carers Associations in every state and territory and is managed by Carers Australia. Carers are able to obtain counselling from qualified counsellors on issues that are specific to the carer’s needs such as depression, stress-related issues, grief and loss and coping skills. t: 1800 242 636 w: http://doiop.com/nccp

See also Carers Australia

20 Resource List

National Prescribing Service (NPS) National Tay-Sachs and Allied Offers information on medicines, including online Diseases Association access to all consumer medicines information and A US-based organisation dedicated to the treatment fact sheets which include the use, instructions, and prevention of Tay-Sachs, Canavan, and related actions and side effects of every prescription and genetic diseases and works to provide information many non-prescription medicines. and support services to individuals and families t: 02 8217 8700 affected by these diseases. f: 02 9211 7578 w: www.ntsad.org e: [email protected] w: www.nps.org.au p: PO Box 1147, Strawberry Hills NSW 2012 NSW Multicultural Health

Translated health information Communication Service about medicines Produces brochures on palliative care in 20 languages. The National Prescribing Service works with the t: 02 9816 0347 Federation of Ethnic Communities’ Councils of f: 02 9816 0302 Australia (FECCA) and other partners to provide e: [email protected] translated health information about medicines. w: www.mhcs.health.nsw.gov.au w: http://doiop.com/translatedhealthinfo p: Locked Mail Bag No 5003, Gladesville NSW 2111

Online medicines search w: www.nps.org.au/search_by_medicine_name Office of Complementary Medicines

See also Medicines Line See Therapeutic Goods Administration National Relay Service Organ and Tissue Authority A Commonwealth Government initiative which (The Authority) is an independent statutory authority provides an Australia-wide telephone access service within the Australian Government Health and for people who are deaf or have a hearing or speech Ageing portfolio. It works to establish a nationally impairment. It is also available to anyone who wishes to coordinated approach to organ and tissue donation contact a person with a hearing or speech impairment. for transplantation. It offers information on organ TTY/Voice: 13 36 77 and tissue donation. Speech-to-speech relay: 1800 555 677 t: 02 6198 9800 The National Relay Service has a Helpdesk to assist f: 02 6198 9801 people in using the relay service. w: www.donatelife.gov.au/The-Authority/About-us t: 1800 555 660 p: PO Box 295, Civic Square ACT 2608 TTY: 1800 555 630 SMS: 0416 001 350 Family Discussion Kit e: [email protected] The kit will help your family to have an informed w: www.relayservice.com.au conversation about each other’s donation wishes.

For general information, advice or training requests w: http://doiop.com/family-discussionkit relating to the National Relay Service See also Australian Organ Donor Register Voice: 1800 555 660 for details of the DonateLife™ Network. (Monday to Friday 9am to 5pm, Sydney time) TTY: 1800 555 630

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Palliative Care Council of South Palliative Care Australia (PCA) Australia Is able to provide information on palliative care t: 08 8291 4137 and palliative care services across Australia. Its f: 08 8291 4122 website contains various publications and resource e: [email protected] guides including a brochure on patient rights and w: www.pallcare.asn.au responsibilities. t: 02 6232 4433 Tasmanian Association for t: 1800 660 055 Hospice and Palliative Care f: 02 6232 4434 t: 03 6285 2514 e: [email protected] f: 03 6239 6030 w: www.palliativecare.org.au e: [email protected] p: PO Box 24, Deakin West ACT 2600 w: www.tas.palliativecare.org.au

Information and resources on palliative care and Palliative Care Victoria treatment options in different languages can also t: 03 9662 9644 be obtained from the state or territory palliative care f: 03 9662 9722 organisations listed below under Palliative Care e: [email protected] Australia member organisations. w: www.pallcarevic.asn.au

Palliative Care Australia Palliative Care WA t: 08 9382 9367 member organisations t: 1300 551 704 f: 08 1300 551 704 ACT Palliative Care Society e: [email protected] t: 02 6273 9606 w: www.palliativecarewa.asn.au f: 02 6273 9590 e: [email protected] w: www.pallcareact.org.au Paediatric palliative care services

Palliative Care NT New South Wales t: 08 8922 6769 Department of Pain Medicine and Palliative Care e: [email protected] The Children’s Hospital at Westmead w: www.nt.palliativecare.org.au Cnr Hawkesbury Road and Hainsworth Street Westmead NSW 2145 Palliative Care New South Wales t: 02 9206 2094 / 0403 669 491 t: 02 9845 0000 f: 02 9206 2094 f: 02 9845 2111 e: [email protected] e: [email protected] or [email protected] w: www.palliativecarensw.org.au Contact: Judy Frost or Sarah Potter

Palliative Care Queensland Bear Cottage t: 07 3633 0096 2 Fairybower Road, Manly 2095 t: 1800 660 055 f: 07 3633 0086 t: 02 9976 8300 e: [email protected] f: 02 9976 8303 w: www.palliativecareqld.org.au e: [email protected] w: www.bearcottage.chw.edu.au Contact: Narelle Martin

22 Resource List

Sydney Children’s Hospital Pain and Palliative Victoria Care Service High Street, Randwick NSW 2031 Very Special Kids 321 Glenferrie Road, Malvern, Vic 3144 t: 02 9382 2095 t: 03 9804 6222 f: 02 9382 7946 f: 03 9822 1252 e: [email protected] e: [email protected] Contact: Clinical Nurse Consultant – Palliative Care w: www.vsk.org.au Services: multidisciplinary, consultative service Victorian Paediatric Palliative Care Program Paediatric Pain and Palliative Care Service Royal Children’s Hospital John Hunter Children’s Hospital Parkville Vic 3052 Lookout Road, New Lambton NSW 2305 t: 03 934 55374 t: 02 4921 3387 f: 03 934 55585 f: 02 4921 3599 w: www.rch.org.au/rch_palliative e: [email protected] Contact: Jenny Hynson or Melissa Heywood w: http://doiop.com/johnhunterchildrenshospital Services: state-wide consultation-liaison team Contact: Dr Sharon Ryan Services: this service is Newcastle-based. It serves Western Australia the Hunter New England and Northern New South Wales regions. Please note that in order for the WA Statewide Paediatric Palliative Care service to be involved in the care of a child, a referral Programs from the child’s treating doctor is required. Princess Margaret Hospital for Children Roberts Road, Perth, WA 6006 Queensland t: 08 9340 8222 Paediatric Palliative Care Service’ f: 08 9340 8384 Children’s Health Services District e: [email protected] 1st Floor, South Tower Contact: Dr Marianne Phillips Royal Children’s Hospital Services: oncology/haematology and Herston Rd, Herston, QLD 4029 non-oncological life-limiting illnesses programs and services t: 07 3636 9480 f: 07 3636 9432 e: [email protected] Palliative Care Information w: www.health.qld.gov.au/cpcre/rchpallcare.asp Service (QLD) Contact: Lee-Anne Pedersen or Anthony Herbert A free community information based telephone Services: consultative service for children with cancer support service for Queenslanders. It provides and non-cancer life-limiting or life threatening up-to-date information on services available conditions in metropolitan, regional and remote areas of Queensland, information and links for people with South Australia a terminal condition and their carers. Paediatric Palliative Care Service t: 1800 772 273 Childrens Youth Womens Health Service t: 07 3632 8333 72 King William Rd, North Adelaide, SA 5006 e: [email protected] t: 08 81617994 w: www.pcis.org.au p: PO Box 2020, Windsor QLD 4030

23 JOURNEYS

South Australia Parenting SA Patient Assistance Transport Scheme Supports parents in South Australia with help t: 1800 188 115 through its Parent Helpline which offers information, w: www.rah.sa.gov.au/country/pats.php counselling and support. Parenting SA also has a range of resources, many of which are in different languages. Tasmania Parent Helpline Patient Travel Assistance Scheme t: 1300 364 100 (24 hours a day, seven days a week, every day of the year) t: 03 6222 8225– Royal Hobart Hospital t: 03 6348 7249 – Launceston General Hospital Parenting SA t: 03 6430 3673 – North West Regional Hospital t: 08 8303 1660 w: http://doiop.com/ptas w: www.parenting.sa.gov.au p: 295 South Terrace, Adelaide SA 5000 Victoria Victorian Patient Transport Assistance Patient Assisted Travel Schemes Scheme t: 03 9616 7777 (PATS) w: www.health.vic.gov.au/ruralhealth/vptas/index.htm Enable patients living in rural areas to access specialist medical services not available at local Western Australia level by providing financial help for the cost of travel Patient Transport Scheme (WA) and accommodation access treatment. Every state t: 1300 135 030 and territory health department has a scheme. w: http://doiop.com/wachs The eligibility requirements for the schemes vary.

Australian Capital Territory Pharmaceutical Benefits Scheme Interstate Patient Assistance Travel Scheme (PBS) t: 02 6205 3299 Through the PBS the Australian Government w: http://doiop.com/iptasact subsidises the cost of a wide range of prescription medicines. Medicare administers the PBS.

New South Wales t: 132 290 (enquiries and support call) Isolated Patients’ Travel and e: [email protected] Accommodation Assistance Scheme w: www.medicare.gov.au/provider/pbs/index.jsp t: 02 6058 4511 w: http://doiop.com/iptaasnsw See also Medicare Australia.

Northern Territory Patient Assisted Travel Scheme Program of Appliances t: 1800 186 026 for Disabled People (PADP) w: http://doiop.com/patsnt Each state and territory provides assistance for families who require access to a range of equipment Queensland to help them care for their child at home. In Patient Travel Subsidy Scheme some states the programs are called Program of t: 07 3236 4833 Appliances for Disabled People. Access is criteria- http://doiop.com/patienttravelscheme based and may vary from state to state. These programs will also be able to advise on services including home and care modifications and access to a specialist child occupational therapist. Ask your care team (specifically your social worker) for information on how best to access these schemes.

24 Resource List

Psychotherapy and Counselling Federation of Western Australia office Australia has an online Find a therapist list of t: 08 9382 3321 accredited counsellors and psychotherapists. f: 08 9380 4533 You can search by name, suburb, state or postcode. e: [email protected] p: 34 Coghlan Road, Subiaco WA 6008 t: 03 9486 3077 f: 03 9486 3933 e: [email protected] Relationships Australia w: www.pacfa.org.au Provides resources to couples, individuals and families p: 290 Park Street, Fitzroy North VIC 3068 to help enhance and support relationships. Its website includes a list of the locations where it operates.

Redkite t: 1300 364 277 An Australian charity that supports children and w: www.relationships.com.au their families through cancer by providing emotional guidance, financial relief and educational services. It offers professional counselling support for bereaved Remembering Site parents and other family members through telephone This is a USA-based not-for-profit initiative where and email Support. Redkite operates in New South you can upload your memories. It contains ideas on Wales, Queensland, Victoria and Western Australia. making memories of all kinds through story writing, photograph collections and recording. For information t: 1800 334 771 e: [email protected] e: [email protected] w: www.therememberingsite.org w: www.redkite.org.au A number of other websites provide ideas on scrapbooking - a way to store, record and share For support photographs and memories. t: 1300 722 644 w: www.scrapbooking.com (Monday to Friday between 9am to 5pm AEST) w: www.scrapjazz.com e: [email protected] w: www.scrapbooking.about.com w: www.creativememories.com.au National and NSW office t: 02 9219 4000 Local craft and art shops can also generally provide f: 02 9280 1518 information and can be contacted via the Yellow e: [email protected] Pages® telephone directory under art and craft. p: PO Box 3220, Redfern NSW 2016

Queensland office Ronald McDonald House Charities t: 07 3832 8853 Work to improve the health and wellbeing of f: 07 3832 8871 seriously ill children. Their work includes the Ronald e: [email protected] McDonald Houses which are attached to major p: PO Box 1889, Toowong QLD 4066 women’s or children’s hospitals and provide a ‘home-away-from-home’ for seriously ill children Victorian office and their families. Access criteria apply. t: 03 9857 4155 t: 02 9875 6666 f: 03 9857 4166 f: 02 9875 6588 e: [email protected] e: [email protected] p: PO Box 1220 G, North Balwyn VIC 3104 w: www.rmhc.org.au

p: PO Box 392, Pennant Hills NSW 1715

25 JOURNEYS

Other websites which include information Siblings Australia Inc on purchasing a star are: Develops and co-ordinates services for families, and in particular, brothers and sisters of children with w: www.starlight.org special needs such as disability or chronic illness. w: www.starregistry.com t: 08 83571214 08 8357 1216 e: [email protected] Stillbirth and Neonatal Death w: www.siblingsaustralia.org.au Support (SANDS) Australia p: 23A King William Road, Unley SA 5061 Provide details of local services for parents and Although Siblings Australia provides some services to families following the death of a baby. SANDS siblings and their families, they are not a crisis support has local offices throughout Australia. service. If you would like to talk to someone urgently about a concern, they recommend you contact: t: 03 9899 0217 (SANDS VIC) Kids Helpline – 1800 55 1800 e: [email protected] Lifeline – 13 11 14 w: www.sands.org.au beyondblue info line – 1300 22 4636 SANDS (Qld) Inc t: 1800 228 655 (outside Brisbane and within SIDS and Kids Queensland) or 1800 228 655 Provide access to information and support networks t: 07 3254 3422 for all ages across Australia. SIDS and Kids also has f: 07 3358 2533 a wide range of booklets for bereaved families. Hard e: [email protected] copies are available through your local SIDS and w: www.sandsqld.com Kids office. p: PO Box 934, New Farm QLD 4005 t: 03 9819 4595 SANDS South Australia f: 03 9818 4596 t: 08 8277 0304 e: [email protected] e: [email protected] (for general queries) w: www.sidsandkids.org e: [email protected] (for support) p: Suite 1, 98 Morang Road, Hawthorn VIC 3122 w: www.sandssa.org p: PO Box 380, Park Holme SA 5043 For advice or bereavement support t: 1300 308 307 (to contact your local SIDS SANDS Victoria and Kids member organisation) t: 03 9899 0217 (administration) t: 03 9899 0218 (support) Starlight Children’s Foundation f: 03 9899 0219 Australia e: [email protected] w: http://www.sandsvic.org.au The foundation runs various programs for seriously p: Suite 208, 901 Whitehorse Road, Box Hill VIC 3128 ill children and their families. Its programs include Starlight Express Rooms and Fun Centres in various hospitals, as well as Starlight Escapes and the Teddy Love Club (TLC) Starlight Wish Granting Program. It can also provide An Australia wide pregnancy and infant loss support information on how to purchase the right to name program. The club supports parents and families a star in your child’s name. who have experienced a neo-natal death. t: 1300 727 827 (for your nearest office) t: 1800 824 240 f: 02 9437 4634 w: www.teddyloveclub.org.au e: [email protected] e: [email protected] w: www.starlight.org.au

26 Resource List

Therapeutic Goods TLC for kids Administration (TGA) A registered children’s charity which provides support services for sick children in hospitals, medical centres, The TGA carries out a range of assessment and organisations working with sick children and children monitoring activities to ensure therapeutic goods available in Australia are of an acceptable standard receiving home care. TLC for kids only takes referrals with the aim of ensuring that the Australian from healthcare professionals and does not take community has access to therapeutic advances. solicitations from parents. All approved goods appear on the Australian Register t: 1300 361 461 of Therapeutic Goods (ARTG). f: 03 9372 2061 t: 1800 020 653 (for publications or general enquiries) e: [email protected] t: 02 6232 8610 (for publications enquiries w: www.tlcforkids.org.au t: 02 6232 8444 (switchboard) p: 15B Ascot Vale Road, Flemington, VIC 3031 TTY: 1800 555 677 then ask for 1800 020 653 Speech-to-speech relay: phone 1800 555 727 then ask for 1800 020 653 Translating and Interpreting Service f: 02 6203 1605 e: [email protected] (TIS) w: www.tga.gov.au Can help you if you need assistance with a language p: PO Box 100, Woden ACT 2606 other than English. It is a national service providing 24 hour a day access to interpreter services. Australian Register of Therapeutic Goods w: http://doiop.com/artg t: 13 14 50 w: http://doiop.com/translating Complementary medicines fact sheets and enquiries The Office of Complementary Medicines regulates Transport Authority and provides information on complementary State transport authorities may provide special medicines for Australians. parking permits to make it easy to park close to Enquiries about complementary medicines medical centres and hospitals, or in wheelchair parking. t: 1800 020 653 (freecall within Australia) To obtain a permit, contact your local transport t: 02 6232 8634 authority. You will require your doctor’s signature TTY: 1800 555 677 then ask for 1800 020 653 on the form. Check under transport in the Business Speech-to-speech relay: phone 1800 555 727 & Government Listings of your local White Pages®. then ask for 1800 020 653 f: 02 6203 1657 (preferred) or 02 6232 8577 e: [email protected] w: www.tga.gov.au/cm/cm.htm Twinkle Toes – p: Office of Complementary Medicines, TGA, Baby hands and feet sculptures PO Box 100, Woden ACT 2606 Provides a service for making a sculpture of your Enquiries about access to unapproved medicines child’s hands and feet. (includes Special Access Scheme, clinical trials, t: 1300 78 11 55 authorised prescribers, personal importation) w: www.twinkletoes.com.au t: 1800 020 653 t: 02 6232 8111 TTY: 1800 555 677 then ask for 1800 020 653 Speech-to-speech relay: phone 1800 555 727 then ask for 1800 020 653 f: 02 6232 8112 e: [email protected] p: Office of Prescription Medicines, TGA, PO Box 100, Woden ACT 2606

27 JOURNEYS

Very Special Kids (VSK) Provides counselling and support services to families caring for a child diagnosed with a terminal illness. The organisation also offers a sibling program and bereavement support. The Very Special Kids House is a hospice for children, providing respite and end-of-life care. t: 1800 888 875 t: 03 9804 6222 f: 03 9822 1252 e: [email protected] w: www.vsk.org.au p: 321 Glenferrie Road, Malvern, VIC 3144

wheelchair-friendly. To learn more about these Other sources of holiday places talk with your care team member. information and support Private health insurance. If you have private health insurance, the fund may provide reimbursement for Children’s hospital. Contact your closest children’s certain health care costs, depending on the level hospital to see what resources they may have and type of private health insurance cover you have. available. Contact your private health fund directly to be fully aware of the services you are entitled to claim. Community libraries and toy libraries provides access to books and toys to loan. Workplaces. A number of workplaces have dedicated employee assistance programs to Community support organisations. There are support staff members, and sometimes their family many community groups that provide support members. Contact the human resource team at your for patients and families with specific medical workplace for information and advice. conditions. These groups are a good source of information about treatment options and networking with families experiencing similar journeys.

To find a support group relevant to your child’s Journeys - Books illness: All of the books listed in this resource are readily • talk with your care team members available.

• contact the Commonwealth Carer Resource Centre Library/bookshop - the listing includes the full title, • look in your local Telstra phone directory or in the author and ISBN. This is all the information the library White Pages® online: www.whitepages.com.au or bookshop will need to find this book for you.

• check the Yellow Pages® directory under Hospital/healthcare centre - check with your care community service organisations or community team. There are many collections of books and health centres and services. reading materials available for loan.

Holiday accommodation. Access to holiday homes Internet purchasing - each of these books is currently in several destinations across Australia is provided available for online purchasing at any major online by many generous families and organisations. bookstore. Some are free of charge, while others charge only a minimal payment. Each has its own requirements, Where a book or resource is available from another conditions and availability with the majority being source, supplier contact details are included.

28 Resource List Contact w: www.dougy.org North Queensland clients t: 0448 684 379 e: [email protected] p: PO Box 1420, Innisfail QLD 4860 All other clients t: 07 3373 7855 e: [email protected] w: www.boolarongpress.com.au QLD 4105 p: PO Box 308, Moorooka t: 1800 500 853 or 02 6269 1080 w: www.health.gov.au w: http://doiop.com/healthfreepub Author/Publisher/Date Department of Health and Ageing Dougy Center for Grieving (1999) - Dougy Center, Children Sourkes, B. - University of (1996) Press Pittsburgh (1996) E. - Beacon Press Grollman, Press G. - Boolarong Crooks, (2005) Doka, K. - Hospice Foundation of America (1995) - Free & Espeland, P. W. Kroen, Spirit Publishing (1996) ISBN 1-890534-03-x 0822955652 1560324473 0807023078 1921054549 1575420007 u d ience y a Title 35 ways to help a grieving child Armfuls of time: The psychological experience the child illness with a life-threatening Support Kit Carer (available in English and 13 other languages. An Aboriginal Kit is also available) Strait Islander Carer and Torres mourning, mourning children Children Bereaved children and teens: A support guide for parents and teens: A support guide for parents children Bereaved and professionals Can I take my panda daddy? cope with the loss of a loved one: A guide Helping children for grownups B and c arers F or parents

29 JOURNEYS

Contact Dr Anthony Herbert Specialist in Paediatric Staff Palliative Care Hospital, Brisbane Royal Children’s t: 07 3636 1357 e: [email protected] w: www.health.qld.gov.au w: http://doiop.com/rchpallcare Grollman, E. - Beacon Press (1991) E. - Beacon Press Grollman, Zagdanski, D. - Warwick Publishing (2008) H.S. - Pan Macmillan Kushner, (2002) Press. M. - Woodland Heegaard, (1992) Author/Publisher/Date Baum, J.D. & Dominica, F. Baum, J.D. & Dominica, F. University R. - Oxford Woodward, (1990) Press Cancer Queensland Children’s Hospital, - Royal Children’s Centre Brisbane (2002) 9780807023631 9780330490559 0855723165 0962050245 ISBN 0192619616 What’s dead mean? How to help children cope with death dead mean? How to help children What’s When bad things happen to good people can learn When someone has a very serious illness: Children to cope with loss and change Title Listen - my child has a lot of living to do: The partnership with in caring for children and professionals between parents conditions life-threatening and child about death: A dialogue between parent Talking Palliative care for children with cancer: A guide for parents for children Palliative care

30 Resource List Contact Contact Golden, T.R. - Golden Healing Golden, T.R. Publishing, Inc (2008) - J.E. & Golden, T.R. Miller, Willowgreen Publishing (1998) (1998) Levang, E. - Fairview Press Author/Publisher/Date Author/Publisher/Date Wild, M. - Penguin Books Australia (1999) Mellonie, B. - Bantam (1983) E. - Celestial Arts Kubler-Ross, (2004) Wild, M. & Vivas, J. - Harcourt (1990) 9780965464918 9781885933270 9781577490784 ISBN ISBN 0140545255 0553344021 1883672791 0152006257 When a man faces grief: 12 practical ideas to help you heal loss from and how you When men grieve: Why grieve differently can help Title Title Swallowed by a snake: The gift of the masculine side healing Jenny angel Lifetimes: The beautiful way to explain death children Remember the secret The very best of friends alking to children about dying and death alking to F or men T 2 - 5 years

31 JOURNEYS Contact Seuss, Dr. - Gardners Books. - Gardners Seuss, Dr. (2001) Lucado, M. - Tommy Nelson (1992) Lucado, M. - Tommy Wilhelm, H. - Dragonfly Books (1988) Cohn, J. - William & Co Morrow (1987) Mills, J. - Magination Press (2003) Mills, J. - Magination Press Lanton, S. - Lanton Haas Press Lanton, S. - Lanton Haas Press (2001) Spurling, M. Working Title Spurling, M. Working Press (2007) White, E.B. Wild, M. - Allen & Unwin (2009) Varley, S. Harper - Trophy (1992) S. Harper - Trophy Varley, Marshall, B. - Centering Corp (1997) O’Toole, D. - Compassion Books O’Toole, (1988) Author/Publisher/Date 0099266598 0849909783 0517572656 0688066852 1591470722 0970248210 9781876288297 9781741757064 0688115187 1561231010 1878321250 ISBN Old Pig My many coloured days My many coloured Just in case you ever wonder I’ll always love you I had a friend named Peter: Talking to children about the to children I had a friend named Peter: Talking death of a friend Gentle willow: A story for children about dying Gentle willow: A story for children Charlotte’s web Charlotte’s chair Daddy’s Bilby moon Badger’s parting gifts Badger’s Animal crackers: A tender book about death and funerals and love Aarvy Aardvark finds hope: A read aloud story for people of finds hope: A Aarvy Aardvark all ages about loving and losing, friendship hope Title 5 -10 years

32 Resource List Contact Loss and Grief Centre t: 08 8301 4208 e: [email protected] w: http://doiop.com/starbear Shriver, M. - Golden Books Adult Shriver, Publishing (1999) Stickney, D. - Pilgrim Press (1997) D. - Pilgrim Press Stickney, Gleitzman, M. - Trophy Press Press Gleitzman, M. - Trophy (1993) Viorst, J. & Blegvad, E. - Aladdin Paperbacks (1987) Buscaglia, L. - Henry Holt & Company (2003) McGough, R. - Random House (2000) M. - Little, L.C. & Brown, Brown, & Company (2004) Brown Wise M. - William Brown, Morrow & Co (2007) Schweibert, P. & DeKlyen, C. - Schweibert, P. (2003) Grief Watch Mundy, M. - Abbey Press (1998) M. - Abbey Press Mundy, Coerr, E. - Puffin Books (1999) Coerr, Author/Publisher/Date Star Bear Foundation 0307440435 082981180X 006440482X 0689712030 9780805071955 9780099561316 9780316119559 0064436683 0961519762 0870293214 0698118022 ISBN When dinosaurs die: A guide to understanding death What’s heaven? What’s Waterbugs and dragonflies: Explaining death to young Waterbugs children Two weeks with the Queen Two The kite and Caitlin The tenth good thing about Barney The fall of Freddie the leaf: A story of life for all ages The fall of Freddie The dead bird Tear soup Tear Sad isn’t bad: A good-grief guidebook for kids dealing with Sad isn’t loss Remembering: Helping young children cope with death and Remembering: Helping young children loss (Book 1 - age 5-8) Sadako and the thousand paper cranes Title

33 JOURNEYS Loss and Grief Centre t: (08) 8301 4208 e: [email protected] w: http://doiop.com/starbear Contact Heegaard, M. - Woodland Press Press M. - Woodland Heegaard, (1988) Heegaard, M. - Woodland Press Press M. - Woodland Heegaard, (1992) Gleitzman, M. - Trophy Press (1993) Press Gleitzman, M. - Trophy Schweibert, P. and DeKlyen, C. - Schweibert, P. (2001) Grief Watch Coerr, E. - Puffin Books (1999) Coerr, Star Bear Foundation Paterson, K. and Diamond, D. - (1987) Harper Trophy Author/Publisher/Date 0962050202 0962050245 06440482X 0961519762 0698118022 0064401847 ISBN When someone very special dies: Children can learn to cope When someone very special dies: Children with grief When someone has a very serious illness: Children can learn When someone has a very serious illness: Children to cope with loss and change Two weeks with the Queen Two Tear soup Tear Remembering: Helping young children cope with death and Remembering: Helping young children loss (Book 2 - age 9-12) Sadako and the thousand paper cranes Bridge to Terabithia Title 10 - 15 years

34 Resource List Contact w: www.dougy.org/ Loss and Grief Centre t: (08) 8301 4208 e: [email protected] w: http://doiop.com/starbear Author/Publisher/Date Traisman, E. S. - Centering Traisman, Corporation (1992) A. - Companion Press Wolfelt, (2001) Dougy Center for Grieving - Dougy Center (1999) Children Zagdanski, D. - Michelle Anderson Publishing (1998) Wilhelm, H. - Dragonfly Books (1998) - Dutton Children’s V. Fry, Lynn Books (1995) Star Bear Foundation Press E. - Tricycle Kubler-Ross, (1998) (1993) E. - Beacon Press Grollman, House D. - Woodbine Gallagher, (2005) Library (1997) D. - Tandem Myer, ISBN 1561230561 1879651238 1890534021 0855721995 0517572656 0525450688 1883672791 0807025011 1890627526 0613776739 Title Fire in my heart, ice veins: A journal for teenagers Fire experiencing a loss Healing your grieving heart for teens: 100 practical ideas Helping teens cope with death How teenagers cope with grief: Something I’ve never felt before I’ll always love you survival among Part of me died too: Stories creative and teenagers children bereaved cope with death and Remembering: Helping young children loss (Book 3 - age 13-16) Remember the secret Straight talk about death for teenagers: How to cope with losing someone you love like to have a brother really The sibling slam book: What it’s or sister with special needs or sister up with a brother our shoes: Growing Views from with special needs T eenagers

35 JOURNEYS SIDS and Kids www.doiop.com/grandparents Contact Contact Author/Publisher/Date Buckman, R. - Vintage Books (1992) Zagdanski, D. - Michelle Anderson Publishing (1994) (2000) D. - Harper Perrenial Kessler, Galinsky, N. - Gal In Sky Publishing Galinsky, Company (1999) Gerner, M.H. - Centering Gerner, Corporation (1990) Kolf, J.C. - Baker Publishing Group (1995) Reed, M.L. - Baywood Publishing Company Inc. (1999) SIDS and Kids Author/Publisher/Date 0967441609 9781561230020 9780801052644 9780895032041 ISBN ISBN 0679732020 0855722371 0060958219 When a grandchild dies: What to do, what to say, how to When a grandchild dies: What to do, what say, cope Grandma’s tears: Comfort for grieving grandparents Grandma’s grandparents cry twice: Help for bereaved Grandparents to grandparent Grandparent For bereaved grandparents For bereaved Title Title I don’t know what to say: How help and support someone I don’t who is dying What to say someone who is grieving Stuck for words: The needs of the dying: A guide for bringing hope, comfort, final chapter and love to life’s or grandparents or friends and family F F

36 Resource List Contact w: www.dougy.org/ Cost $15 Department of Pain Sarah Potter, Medicine and Palliative Care Locked Bag 4001, Weastmead NSW 2145 t: 02 98452275 e: [email protected] for Grieving The Dougy Centre and Families Children w: www.grievingchild.org w: www.dougy.org Author/Publisher/Date Dougy Center for Grieving - Dougy Center (1998) Children Hospital at The Children’s Westmead Dougy Center for Grieving - Dougy Center (1999) Children ISBN 1890534013 1890534056 Helping the grieving student: A guide for teachers with life-limiting illnesses: A manual for children Teaching schools When death impacts your school Title or teachers or teachers F

37 JOURNEYS w: www.palliativecare.org.au w: www.palliativecare.org.au w: http://doiop.com/ajourneylived Bereavement Recovery & Bereavement Educational Consultants PO Box 286, Port Adelaide, DC 5015 t: 08 8248 6539 or 0429 674 598 Contact w: www.doiop.com/ababyhasdied ABC Shop w: www.shop.abc.net.au Komar, C.A. - 1st Books Library Komar, (2002) Lord, J. - Pathfinder Publishing of Lord, California (1989) Knapp, R. - AuthorHouse (2005) Palliative Care Australia (2005) Palliative Care Hipp, E. - Hazelden (1995) Lewis, C.S. - Harper San Francisco (2001) Peddey, E. - Winning in Life Peddey, (1991) Presentations Author/Publisher/Date Inc (1999) SANDS (WA) McKissock, M & D. - ABC Books (2001) 0759669678 0934793212 1418472220 0975229516 1568380852 0060652381 0646049712 ISBN 9780733304385 o p ic y t Coping with grief Coping with grief: A self-help guide Beyond sympathy: What to say or do for someone suffering Beyond sympathy: What to say or do for someone suffering illness or loss an injury, Beyond endurance: When a child dies A journey lived: A collection of personal stories from carers A journey lived: collection of personal stories from Help for the hard times: Getting through loss times: Getting through Help for the hard A baby has died A grief observed Don’t forget I hurt too forget Don’t Title B support Bereavement

38 Resource List Canteen t: 1800 226 833 e: [email protected] PO Box 1604 Alice Springs NT 0870 t: 08 8951 4457 f: 08 8958 4515 w: www.caac.org.au/social Contact Hill, P. - Inland Womensource, - Inland Womensource, Hill, P. (1994) Vercoe, E. & Abramowski, K. - Black Vercoe, Dog Books (2004) Webster Blank, - J. Baywood Webster Publishing Company (1997) Tatelbaum, J. - William Heinemann Tatelbaum, Ltd (1993) Sarnoff Schiff, H. - Penguin (1978) Schiff, Sarnoff Kubler-Ross, E. - Celestial Arts Kubler-Ross, (1991) Canteen Harris Lord, J. - Pathfinder Harris Lord, Publishing (2000) Edelman, H. - Delta (1995) Zagdanski, D. - Michelle Anderson Publishing (1998) Central Australian Aboriginal – Social Emotional Congress Branch Wellbeing Author/Publisher/Date 0646069004 1876372524 0895031787 0749309369 0140050434 0890876533 0934793689 0385314388 0855721995 ISBN The time in between: Motherhood grief The grief book: Strategies for young people The death of an adult child: A book for and about bereaved The death of an adult child: A book for and about bereaved parents The courage to grieve: Creative living, recovery and growth and growth living, recovery The courage to grieve: Creative grief through Tears of joy Tears parent The bereaved On life after death No time for goodbyes: Coping with sorrow, anger and No time for goodbyes: Coping with sorrow, injustice after a tragic death Loss and grief: Helping Aboriginal people cope, where to Loss and grief: Helping Aboriginal people cope, where go for help Motherless daughters: The legacy of loss How teenagers cope with grief: Something I’ve never felt before Title

39 JOURNEYS

Contact Centrelink t: 1800 050 004 http://doiop.com/whattodo Contact SIDS and Kids t: 03 9819 4595 w: http://doiop.com/anotherbaby w: www.dougy.org/ Contact SIDS Australia w: www.sidsandkids.org/publications w: http://doiop.com/funeralsexplained Kushner H. - Anchor, (2004) Kushner H. - Anchor, Author/Publisher/Date Author/Publisher/Date National SIDS Council of Australia Dougy Center for Grieving - Dougy Center (1999) Children Author/Publisher/Date 1890534048 ISBN 1400034728 ISBN ISBN What to do when one of ‘our mob’ passes away When bad things happen to good people Another baby: The decision is yours funeral Choices in arranging your child’s Funerals: Some issues explained What about the kids? Understanding their needs in funeral planning and services Title Title Title uneral planning uneral eciding on another child D eciding on another F Bereavement support Bereavement

40 Resource List Contact Contact – Children’s Centre Palliative Care Cancer Blood Disorders Hospital Sydney Children’s (02) 9382 1739 Hospital, Brisbane Royal Children’s (07) 3636 1357 Drew, D. - Sydney Children’s D. - Sydney Children’s Drew, Hospital (2005) Cancer Queensland Children’s (2002) Centre Author/Publisher/Date Lynn, J. - Oxford University Press University Press J. - Oxford Lynn, (2001) Doka, K. - Macmillan (1998) (1990) Siegel, B. - HarperPerrenial Publishing (1989) I. - Avery Gawler, - Dawn Publications (1994) King, P. (2000) D. - HarperPerrenial Kessler, (1989) A. - Ashgrove Meares, Author/Publisher/Date 0195146018 0787940488 0060919833 0895294478 188322005X 0060958219 0906798388 ISBN better better arrangement ISBN Handbook for mortals: Guidance people facing serious illness their illness: A guide for parents, Living with life-threatening families and caregivers Love, medicine and miracles Peace of mind: How you can learn to meditate and use the power of your mind Quest for life: A handbook people with life-threatening illness The needs of the dying: A guide for bringing hope, comfort, final chapter and love to life’s The wealth within Paediatric palliative care: Caring for your child at home Paediatric palliative care: with cancer – A guide for parents for children Palliative care Title Title Helping yourself management Symptom

41 GREY 19213 JOURNEYS Palliative care for children and teenagers

Journeys: Palliative care for children and teenagers is available in hard copy free of charge.

Journeys order form

name:...... address:......

......

...... postcode:...... telephone: ...... email: ......

number of copies:

Return this form to Palliative Care Australia. fax 02 6232 4434 email [email protected] post PO Box 24 Deakin West ACT 2600

NMM code: P1083

PO Box 24 t: 02 6232 4433 e: [email protected] Deakin West ACT 2600 f: 02 6232 4434 w: www.palliativecare.org.au