Helpful Links

Support or advocacy groups and services: The IBTA maintains an extensive worldwide listing of patient groups here. Other groups of interest are available here.

We are endeavouring to identify groups and contacts (particularly brain tumour care coordinators) within Australia. If you know of any not listed here please contact: secretary@btaa.org.au

Victoria: Carolyn Gilpin of BrainLink Services Ltd (Melbourne) (www.brainlink.org.au) has advised: "We provide resources & information about services to people with Acquired Brain Injury, including people with brain tumours. We also keep a list of the (very few) support groups in Victoria, including our group in Blackburn for people with primary malignant tumours. We also hope to start another group next year, for people with benign tumours. Carolyn Gilpin, Information & Administration Officer 03 9845 2952 BrainLink Services Ltd "Reducing incidence & impact of brain disorders in our community" The Nerve Centre 54 Railway Road Blackburn VIC 3130 Freecall: 1800 677 579 Fax: 03) 9845 2882 admin@brainlink.org.au There is also a group at the Alfred Hospital, contact Helen Mott on 03 9276 3369. Di Legge is the Brain Tumour Support Officer at Austin Health - Cancer Services x 3315  e dianne.legge@austin.org.au t 9496 3315 PO Box 5555, Heidelberg VIC 3084. There is also a shared brain tumour care coordinator at Royal Melbourne Hospital (Marcia Fleet 03.93424589).
Grey Matters - A new support group for those living with a benign and low grade brain tumour. Grey Matters is affiliated with Cancer Council Victoria and associated with Melbourne Hospitals (including Royal Melbourne and The Austin). Meets 3rd Monday of the month at the Carlton North Library at 7pm for 7:30pm. Contact Janet - 0422 639 993. thegreymatters01@gmail.com See also www.braintumourahoyhoy.org which is an online support group for people with low grade brain tumours.

Western Australia: Brain Tumour Association Western Australia. Contact Heidi Cornelisson (Secretary), PO Box 251, Wembley, WA 6193. Phone:  0430196059 news@braintumourwa.com  They also have a website at: http://braintumourwa.com/go/ Sir Charles Gairdner Hospital: Medical Oncology inquiries 93461222, Radiation oncology inquiries 93464900, MRI Inquiries 93467900. The WA Cancer and Palliative Care Network has a cancer care coordination service whose webpage can be accessed here.  The contact numbers for the neuro oncology nurse coordinator are: 0400 021649 or office number 92220202

South Australia: Adult Brain Cancer Support Association. See their Facebook entry. Contact: Andy Stokes.   andy.stokes@sa.gov.au 

Queensland: Brain Tumour Support Service. Contact Sarah Thompson, Cancer Support Coordinator, Group Programs, Cancer Council Queensland, 553 Gregory Terrace, Fortitude Valley QLD 4006, or write to: Brain Tumour Support Service, Cancer Council Queensland, PO Box 201, Spring Hill Qld 4004 Or Call Cancer Council Helpline on 13 11 20 (toll free) Monday to Friday, 8am to 8pm. There is also a part-time brain tumour support officer at Princess Alexandra Hospital (Carley Mills).

From information supplied by the practice: "Brizbrain and Spine (http://brizbrain.com.au/) has employed Vivien Biggs RN, for several years as a Brain Tumour Nurse, and who is now Australia's first Neuro-Oncology Nurse Practitioner. Vivien sees patients independently in hospital and in clinic, before surgery, throughout hospitalization, and thereafter. She provides education and support and is a first point of contact for patients and their families. She organizes and coordinates care for Brain Tumour patients and works closely with the Neurosurgeons at Brizbrain and Spine, as well as other treating specialists (medical and radiation oncologist and others) and GPs. Vivien can be contacted on 07-38332500, 0447448400, or vivienb@brizbrain.com.au (N.B. The group has recently changed its name to the Newro Foundation and we are awaiting advice of the new email addresses.)

Gold Coast: A support group meets on the 3rd Wednesday of each month at 10.30 a.m. at the Tugun Surf LIfe Saving Club. Contact Pete McLaughlin 0422784885 or 0755983709. Email: petershark72@hotmail.com

NSW: Liverpool Hospital. Contact Kylie Wright or Teresa Simpson. Kylie Wright, Neurosurgical CNC/Nurse Case Manager, Liverpool Health Service, Neurosurgery Department, Level 1 Clinical Building, Locked bag 7103, Liverpool BC, NSW 1871, Telephone: (02) 98284078 (direct), Pager: 98283000 No. 49455, Fax: 98284305 E-mail: kyliem.wright@swsahs.nsw.gov.au Teresa Simpson, Senior Oncology Social Worker, Cancer Therapy Centre - Liverpool Health Service, Locked Bag 7103, Liverpool BC NSW 1871. Ph. 61 +2 9828 5224. 98283000 ask for Pager. #25558. E-mail. teresa.simpson@sswahs.nsw.gov.au

Marina Kastelan is a brain tumour care coordinator at the Northern Cancer Institute (02. 8425 3610)

The Prince of Wales Hospital, brain and spinal tumour support group, meetings held monthly, all welcome. Contact Alanah Bailey (02) 93823802 or email: alanah.bailey@sesiahs.health.nsw.gov.au

Westmead. Message from Emma Everingham: "I am one of three co-ordinators of NOgIN, The Neuro- Oncology Information Network. We run a support and information group for patients/carers from Westmead Hospital and Westmead Private Hospital who have had treatment for brain tumours. Please see our brochure for contacts and details." Emma Everingham | Clinical Nurse Consultant Neuroscience, East Wing | Westmead Private Hospital Cnr Mons & Darcy Roads, Westmead NSW 2145, PO Box 161 Westmead NSW 2145 t: 02 8837 8926 02 8837 9000, page number 9 email: everinghame@ramsayhealth.com.au

Hunter Brain Tumour Network meets third Sunday afternoon of each month in central Newcastle. Meetings are informal and patients, family members, carers and those whose lives have been impacted by a brain tumour are welcome. The interest of health professionals is appreciated in referring people. Please contact Kaye Duffy at kduffy@hunterlink.net.au or phone 0413 275 853 for more information. The group has a link to a website called Brain Tumour Australia Information.

Central Coast: There is also a support group and care coordinator associated with  the NSW Central Coast hospital and we have sought additional information.

ACT: ACT Brain Tumour Network. Contact Susan Pitt (62470632) or susan.pitt@netspeed.com.au or MaryAnne Rosier  (maryanne.rosier57@hotmail.com) Brain tumour patients in Canberra have access to a liaison psychiatrist at ACT Health. Dr Anna Burger advised in 2011: "I do not have a private practice, but see patients at The Canberra Hospital in Medical Oncology Outpatients in my Psycho-oncology clinic on a Wednesday. Referral from a general practitioner or medical specialist is required, and there is usually a 6 week wait, or thereabouts.  All patients are bulk billed.   I also see Home based Palliative Care Patients at Clare Holland House, and inpatients in the general wards at Calvary Hospital.  The best point of contact is through the Psycho-oncology clinic at TCH 0n 02 6244 2188." A care co-ordinator who covers brain tumour patients has recently been appointed (October 2011). See: Juliane Samara, Non Tumour Specific Nurse Care Coordinator, Capital Region Cancer Service Building 23, The Canberra Hospital Phone: 61744416 or 0478 402 288 Email: juliane.samara@act.gov.au

The Look Good Feel Better people also run courses at Pearce Community Centre in Canberra five times a year. Contact:

Joanne Meehan
NSW/ACT Program Manager
Look Good... Feel Better
Phone:9659 8559
Fax:9899 9843
Mob: 0411 696 776
Email: joanne@lgfb.org.au
website: www.lgfb.org.au

Australian Pituitary Foundation Ltd: A national organisation run by pituitary patients and their families. The Foundation has developed networking and educational resources to support children, adults and families affected by pituitary tumours and disorders. Ph 1300 331 807. Email: support@pituitary.asn.au Website: www.pituitary.asn.au

Acoustic Neuroma Association Australia: This group has useful information on its website for phone contacts for most States and advice about meetings.

Brain Foundation: Established to "reduce the incidence and impact of disorders of the brain, spinal cord and nervous system through the provision of support, community education and research". Website: http://brainfoundation.org.au/

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