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support Organisations

Cancer Connect telephone (13 11 20) The Cancer Council can put you in touch with a support person who has a similiar diagnosis. Volunteers are trained to provide practical information and emotional support. They do not give medical adv or provide professional counselling.

 

Brain Tumour Patients Telephone Support Group Freecall 1300 755 632 Monday - Friday 9am - 5pm or email tsg@nswcc.org.au 

The Cancer Council NSW provides the opportunity for you to talk with other people living with a brain tumour. Being telephone based you can join the group from anywhere in Australia. Brain Tumour patients telephone support group meetings are held on the FIRST and THIRD Monday of each month.  

Cancer Connections (online)  www.cancerconnections.com.au  

 

NEW Brain Cancer Support Australia

Brain Cancer Support Australia at the Centre for Community-Driven Research offers a virtual clinic via telephone where patients and their families can set an appointment with a registered nurse to develop a care plan, ask questions about clinical trials, support services, talk about referrals to clinical and local services, or just to chat. Patients will be assigned a nurse who will follow-up with them and family members for as long as they need so that you are never alone. If patients just want to talk to a nurse and be pointed in the right direction without a full consultation, that's fine also. Family members are also very welcome to access the service if they need someone to talk to. CCDR also have the capacity to develop support groups (face-to-face or telephone) if there are no other groups within a patient's local area. To access this service call 1300 42 68 77 or email nurse@cc-dr.org. www.13004anurse.org

 

Patient Support by Geographic Area - International, Victoria, WA, SA, QLD, NSW, ACT, Pituitary, Acoustic Neuroma

 

 

INTERNATIONAL - The International Brain Tumour Alliance (IBTA)maintains an extensive worldwide listing of patient groups here. Other groups of interest are available here

 

 

 

VICTORIA - BrainLink Services Ltd (Melbourne) 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. BrainLink Services Ltd. The Nerve Centre 54 Railway Road Blackburn VIC 3130 Freecall: 1800 677 579 Fax: 03) 9845 2882 info@brainlink.org.au 

 

 

 

 VICTORIA - The Brain Tumour Support Service based at Austin Health provides a range of services to people affected by the diagnosis of a primary brain tumour including a monthly support group, information/education programs, individual support appointments and support for carers’.  The Brain Tumour Support Group is held on the 2nd Wednesday of the month 11am-1pm at the Olivia Newton-John Cancer & Wellness Centre, 145 Studley Road, Heidelberg.  Contact person is Di Legge (Brain Tumour Support Officer) 9496 3315 or btso@austin.org.au

 An alternative contact for Di on Wednesdays is anita.talwar@austin.org.au or ext 3315

The support group is open to anyone affected by the diagnosis of primary brain tumour: patient, carer, family, friend & does not need to be an Austin Health patient. Anyone can attend, as long as they can get there.

 Wellness & Supportive Care email contact wellness@austin.org.au

 

 

VICTORIA - Cabrini Health Neuro Oncology Care Coordination

Cabrini Neuro-Oncology program, integrates care from diagnosis through-out illness with an extensive specialist multidisciplinary team. Cabrini Neuro-Oncology Nurses co-ordinate and deliver care to patients in hospital and people living in the community with primary malignant brain tumours. In conjunction with Monash Health, Cabrini Neuro-Oncology program conducts a monthly support group for people living with primary brain cancer. This group is not restricted to people receiving care at Cabrini or Monash Health. Anyone living with primary malignant brain cancers are welcome. The group meets:

When: Last Thursday of the month. 11-1230pm

Where: Shelton Lounge, Cabrini Rehabilitation

494 Glenhuntly Road, Elsternwick, Victoria

Contact: Cabrini Neuro-Oncology Nurses Tele: 03 9508 1544

For more information please visit our link.

 

 

 

VICTORIA - There is also a shared brain tumour care coordinator at Royal Melbourne Hospital (Marcia Fleet 03.93424589).

 

 

 

 

VICTORIA - Kathy Vickers is the Cancer Care Coordinator for the CNS tumour stream at Hume RICS: 107Hume Street, Wodonga, Vic 3690. Tel 02 6057 5206.

 

 

 

VICTORIA - Grey Matters is support group for those living with a non-malignant and low grade brain tumours. 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.

 info@ greymatters.org.au

 

 

 

VICTORIA - brain Tumour Ahoy Hoy

Brain Tumour Ahoy Hoy. Samantha Wright has her own website and twitter account which provides online support for people with lower grade brain tumours. Have a look around her site. A safe place to drop anchor and find merchandise.

 

 

 

VICTORIA - Talking Heads: Blackwood 8 have a Support Group called ‘Talking Heads’ for those affected by all types of brain tumours, those diagnosed, carers and friends aged approx. 25 -50yrs. Our purpose is to offer mutual support, education and resources in the local community. We meet every 3 weeks in Doncaster, Victoria.  For further details contact visit the Blackwood 8 website (www.blackwood8.com.au). It is free to attend and supported by Vic Cancer Council and Manningham City Council.

Please contact us for further enquiries. Call David 0418 372 961 or Daniel 0409824667


 

VICTORIA - Peace of Mind Foundation. Geelong.

Peace of Mind Foundation holds a brain tumour support group meeting in Geelong. Meetings are held every second Monday of the Month at South Barwon Community Centre, 33 Mt Pleasant Rd, Belmont. To find out when the next meeting is RSVP: Bec Picone on - 0411 382 457 or via email.

See more about the group here.

 

 

 

WESTERN AUSTRALIA - Brain Tumour Association Western Australia. Contact the group's support number (08) 6314 6680 braintumourwa@hotmail.com  They also have a website at: www.braintumourwa.com.

 

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 cancer  nurse coordinator (Anne King)  are: 0400 021649 or office number 08 92220202 Email:

anne.king@health.wa.gov.au

 jamescroftshopefoundation logo

WESTERN AUSTRALIA - James Crofts Hope Foundation The Foundation is committed to providing support and assistance to adults and children diagnosed with brain tumours, their carers and family, and also to the advancement of the treatment, and research of these conditions. Support group meetings on the last Tuesday of the month see more

here.

President 0416 118 077  Secretary John 0428 247 319

 

SOUTH AUSTRALIA - Adult Brain Cancer Support Association (South Australia). See their Facebook. Contact: Andy Stokes.  Run by Andy and Rosel Stokes  adultbraincancersa@gmail.com

 

 

QUEENSLAND - Brain Tumour Support Service (QLD). Contact 13 11 20 or email btss@cancerqld.org.au to access the Service. The Service provides: information about brain tumours, treatments, support agencies and rehabilitation services as well as practical support; regular information session in our Brisbane office, providing opportunities to meet with other people who have been impacted by a brain tumour and hear guest speakers including health pofessionals discuss topics of interest; and regular newslettes. View the Brain Tumour Support Servie newsletter online and other information here.

 

QUEENSLAND - Brisbane Brain Tumour Support Group - Peer support group that welcomes any patient with a brain tumour, carers or loved ones, to share their story and provide or receive support.  Meets on the 1st Thursday of each month (except January) at 10am - 12pm at Cancer Council Queensland, 553 Gregory Terrace. They are run independantly but supported by the CCQ.  Braintsg@gmail or call 13 11 20 for more information 

 

There is also a Brain Tumour Support Nurse at the Princess Alexandra Hospital in Brisbane - Emilia Hunt, Ward 2C, Neurosurgery, Phone 07 3176 2137. Email: btan_pah@health.qld.gov.au

 

QUEENSLAND - Sunshine Coast Brain Tumour Support Group - held in Buderim –

The Group meets on the last Friday of every month 10.30-12.30 @ Bloomhill Cancer Care, 58 Ballinger Road Buderim

Contact admin@bloomhill.com.au for further information. 07 5445 5794

 

 

QUEENSLAND - From information supplied by the practice: The Newro Foundation (formerly BrizBrain and Spine) 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 as well as other treating specialists (medical and radiation oncologist and others) and GPs. Vivien can be contacted on (07) 3833 2500.

 

PalAssist.  The service, operated by Cancer Council Queensland, can be contacted 24 hours a day, seven days a week. PalAssist is a no cost telephone and online service which offers immediate advice and emotional support for patients, carers, family and friends. Palliative care is all about improving the quality of life for patients facing life threatening illness and their families. 1800 772 273 Web site http://palassist.org.au/ 

 

 

NEW SOUTH WALES - Liverpool Hospital.

 

Theresa Simpson, 02 8738 5224 oncology social worker or Kylie Wright, quality and Accreditation manager, 02 8738 8415

The Dept of Neurosrgery and Cancer Therapy at Liverpool Hosp, host a monthly education and support programme for people diagnosed with a bt.

The meetings focus on various topics relating to bts and provide opportunities for attendees to share experiences and discuss issues of concern in a supportive environment while enjoying light refreshments.

The group welcomes family, friends and support persons to attend with the brain tumour patient.

Dates: every second Tues of the month from Feb to Dec

Time: 10 am til 12 noon

Venue: Thomas and Rachel Moore Education Centre Liverpool Hosp NSW

 

BTAA Sydney Peer Support @ Lifehouse

NEW SOUTH WALES - BTAA’s Sydney peer to peer Support Group.

The first Friday of the month.

Come to the main reception and you will be directed to our room.

Please come if you can. We would love to meet you.

Chris O’Brien Lifehouse is located across the road from the Royal Prince Alfred Hospital on Missenden Road, Camperdown, just three kilometres from the Sydney CBD. Lifehouse is easy to get to on foot, by car or using public transport.
See how to get there here http://www.mylifehouse.org.au/about-lifeho…/how-to-get-here/

RSVP : BTAA's Catherine@hindson.org or 0412 041 245 (for catering)

GOSFORD/WYONG

NEW SOUTH WALES - Colleen Stevens is the Uro/Neuro Cancer Nurse Coordinator at the Gosford/Wyong Hospitals, PO Box 361, Gosford, NSW 2250. Phone 0 2 43202187

 

 

 

NEW SOUTH WALES - Sydney Neuro-Oncology Group (SNOG) Brain Tumour Support Group. North Shore Private Hospital. Holds meetings every two months with a guest speaker. Next meeting Thursday 19 February.from 1pm - 3 pm. Dr Adrian Lee, Medical Oncologist. See more here. Contacts: 02-84253369, emailmailto: snog@snog.org.au  Open to the general community.

Marina Kastela. in the Neuro Oncology Care Coordinator at SNOG - contact 02 8425 3610 Email kastelanm@ramsayhealth.gov.au

 

 

 

NEW SOUTH WALES - Westmead

The Neuro- Oncology Information Network “NOgIN” is a support and information group for patients/carers from Westmead Hospital and Westmead Private Hospital who have had treatment for brain tumours. We also welcome any patients/carers from outside our area. Please click on our 2015 program.

Contacts: Emma Everingham | Clinical Nurse Consultant Neuroscience,  Westmead Private Hospital Cnr Mons & Darcy Roads, Westmead NSW 2145 t: 02 8837 8926  email: everinghame@ramsayhealth.com.au

Diane Lear, Clinical Nurse Consultant Neuroscience, Westmead Hospital, Hawkesbury Road, Westmead NSW 2145 t: 0408 184 833 email: diane.lear@health.nsw.gov.au 

 

 

NEW SOUTH WALES - Hunter Brain Tumour Network 

The Hunter Brain Tumour Support Network meets on the first Wednesday of each month at a Central Newcastle meeting point.  If you are a patient, carer, family member or health professional and would like to attend, or have more details, please call the co-ordinators, Kaye Duffy, 0413275853, or Laraine Cross, Social Work Department, Calvary Mater Hospital, Waratah. 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. 

Members of this support group maintain a very useful website called Brain Tumour Australia Information, with a range of useful and practical Fact Sheets. www.btai.com.au

 

 

ACT AND SURROUNDING DISTRICTS - ACT Brain Tumour Network: The ACT BT support network meets on the 4th Sunday of the month at either Woden or Yarralumla Southern Cross Club. The Yacht Club at Yarralumla is the summer venue. The meeting commences at 11 am, followed by lunch/fish and chips at 12.15pm. Please feel free to join us for either the meeting or the lunch or both. Meet at the reception for instructions re the location within the club. Convened by Susan Pitt , Philip Steel and Mark Dalliston under the auspices of BTAA. Email btaa@shout.org.au or call Susan on 0404255156. Brain tumour patients in Canberra have access to a liaison psychiatrist at ACT Health, Dr Anna Burger. The best point of contact for Anna is through the Psycho-oncology clinic at TCH 0n 02 6244 2188.

Juliane Samara is the Brain & CNS Cancer Nurse Specialist at The Canberra Hospital.

 

Gynaecology, Brain and CNS Specialist Nurse

Ph: 6244 4416

Email: juliane.samara@act.gov.au

Note the Cancer Support Group ACT Eden Monaro's Own provides financial support - currently up to $2,500 - for Pharmacy, Chemo, Food drink supplements, food/petrol, and/or gas/electricity.

Phone 02 6297 1261or email csg2@bigpond.com 21 Cooma Street Queanbeyan. Each case is assessed on its merits.

 NATIONAL - 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
 

NATIONAL - Acoustic Neuroma Association Australia: An Acoustic Neuroma (or Vestibular Schwannoma) is a benign encapsulated tumour which arises from the 8th cranial nerve. The 8th cranial nerve is actually two separate nerves, one associated with balance and the other with hearing and it is here that this tumour usually arises from either one of these nerves in the bony internal auditory canal between the inner ear and brain. The 7th nerve which services facial movement also passes through this canal as do important blood vessels. These tumours are usually slow growing but as they expand they begin to press on the hearing, balance, and other nerves. They can then extend into the area at the base of the brain and press on the vital structures of the brain, which can be life threatening.

Website: http://www.anaa.org.au/what-is-an-acoustic-neuroma/