BTAA E NEWS DECEMBER 2011

Dear Friend

 2011 has been a year of great difficulty for many families and friends across Australia living in the aftermath of a brain tumour diagnosis and its treatment. BTAA pays tribute to the courage and resilience of patients and extends its condolences for those who have passed away and to those they leave behind.

 International Brain Tumour Awareness Week 2011 (30 Oct – 5 Nov): In addition to events across Australia to mark International Brain Tumour Awareness Week 2011, the Prime Minister wore a grey ribbon in the House of Representatives (see photo on the BTAA website: http://www.btaa.org.au/ ) . She was joined by other MHRs including Mr John Alexander AOM MP, and Senators, including Senator Catryna Bilyk, Joint Convenor of the Brain Tumour Parliamentary Interest Group. Thankyou to all MPs and Senators who wore ribbons during the week. It heartened Australians living with brain tumours and their caregivers to see their highest elected officials personally expressing solidarity with their situation.

 Hat for a day for BTAA: BTAA committee member MaryAnne Rosier initiated a very successful "Wear a hat for a day for BTAA" project which involved people in different parts of Australia wearing unusual hats and taking up a collection for BTAA. The project was part of the International Brain Tumour Awareness Week and there is a report of the various activities held during the Week at: www.btaa.org.au/2011WeekA.html MaryAnne has nominated Tuesday 6 November as the day for a repeat of this project in 2012.

 Donations to BTAA are now tax-deductible: BTAA has been endorsed by the Australian Taxation Office as a Deductible Gift Recipient. ABN 97 733 801 179. Please consider donating to Brain Tumour Alliance Australia Inc to support its peer-support and advocacy work: Account name: Brain Tumour Alliance Australia. Commonwealth Bank. BSB: 06 2900. Account Number: 10603153.

 Treatment plans and timeliness of treatment: While many patients were happy with their health care and interaction with the health system, BTAA continues to receive calls (Freecall 1800 857 221) from patients and caregivers who feel worried about delays in their treatment or who receive insufficient guidance on their treatment plan. This occurs in both the private and public system, but patients in the latter often feel that they have no option but to await further contact. Doctors in the public system informed BTAA that you have a right to a second opinion or treatment by another practitioner. This right is upheld in the Brain Tumour Patients' Charter of Rights, which we adhere to. This right is especially important to bear in mind if you feel uncomfortable providing consent to a procedure that you have not had adequately explained to you, or if you are experiencing delays in treatment. Have a consultation with a general practitioner to discuss your options in having your scans and records forwarded between health professionals or between hospitals or similar institutions. Please do not wait in silence if you are uncomfortable with an aspect of your treatment.

 Health Care Direct Health Advice Line: On the topic of patients and caregivers waiting in uncertainty, BTAA applauds the recent creation by the Australian and State/Territory governments (excepting Victoria and QLD) of the 24 hours-a-day, 7 days-a-week Freecall Health Care Direct Health Advice Line (1800 022 222) staffed by registered nurses with access to computerised decision support systems and offering healthcare triage, health advice and health information. The use of the hotline will be much welcomed by patients and caregivers, particularly those in the situations described in the paragraph above. More information on this service is available at www.healthdirect.org.au

 While applauding this move BTAA calls for the introduction of an after-hours brain tumour-specific national Freecall service for non-life threatening questions by patients and caregivers. In our recent satisfaction survey (see below) BTAA found that more than half the respondents supported such a program.

 COSA clinical professional day: The neuro-oncology group of the Clinical Oncological Group of Australia is holding a clinical professional day in Sydney on 9 March which will be attended by leading neuro oncologist Professor Martin van den Bent from the Netherlands. Interested consumer advocates are welcome to attend. Further information is available at:www.cosa.org.au/asm/cosa-neuro-oncology-clinical-professional-day.html Members of the BTAA national committee plan to attend and would be delighted to meet up with other brain tumour advocates. Please contact the BTAA Secretary (secretary@btaa.org.au) if you plan to be in Sydney for this meeting.

 Cancer Institute NSW ‘Evaluation of the role of Cancer Care Coordinator’:BTAA still considers that the best solution for the problem of patients and caregivers waiting in uncertainty is the establishment of an additional 10 to 15 ongoing brain tumour care coordinators positions across Australia (see: www.btaa.org.au/btaabudgetsubmissionv6a.pdf). On this note, publication by the Cancer Institute NSW of the ‘Evaluation of the role of Cancer Care Coordinator, Summary report, November 2011’ is a valuable addition to the evidence base in Australia for care coordinator positions, including for neuro-oncology, and was undertaken between early 2009 and late 2010.

 It stated that in regards to NSW, there are ‘…approximately 50 full-time equivalent cancer care coordinator positions [funded] under the Cancer Services Infrastructure Support Program (CSISP).’ ‘…Provided at a cost of $4.5 million per annum [$90000 per position]...’, and that they each have ‘…10 patient contacts [per] day’,·’…see about 23 new cancer patients per month’, and have approximately ‘2,300 patient contacts per year.’.

 According to the stakeholders in the study, ‘[t]he information cancer care coordinators provide is considered valuable, appropriate and timely in meeting the needs of both patients and health professionals…’, and ‘…cancer care coordinators have been particularly effective in tailoring information to suit the needs of the patients.’. The report also stated that: ‘Health professionals at sites without cancer care coordinators identified the lack of an advocate for the patient as a gap in service delivery.’, and concluded that ‘The value of the cancer care coordinator positions has been clearly demonstrated in the evaluation.’.

 While the report identifies many positives from the existence of these coordinators, BTAA maintains that due to their high and direct cognitive impacts and frequent detection only at the acute (late) stage of onset, brain tumour patients and caregivers have the highest unmet needs for cancer care coordinators. Having concluded that the generic positions are valued per se, the report is a very important resource for those advocating for establishment of additional brain tumour care coordinator positions, and it can be accessed at: www.cancerinstitute.org.au/media/147968/summary%20report%20minus%20es.pdf

BTAA's case for more brain tumour-specific care coordinators can be found at: www.btaa.org.au/btaabudgetsubmissionv6a.pdf

 Cognitive rehabilitation in children with brain tumours: On the topic of cognitive impacts, not only are brain tumours now the leading of cancer-related deaths in children, adolescents, and young adults, but they and their treatment leave survivors with far greater cognitive impairment than any other cancer type. For example, a recent study by Watanabe et al, (Watanabe et al, 2011; Intellectual development after treatment in children with acute leukemia and brain tumor. Pediatrics International. 53(5):694-700) compared intellectual development in children treated for acute leukaemia (N=26) and brain tumour (N=12) from 2000 to 2009 in a single hospital in Tokyo, Japan. They found that in patients with acute leukaemia, IQ was unchanged at both one year and three years on from initiating treatment. While in brain tumour patients, verbal IQ had significantly decreased by one year after initiating treatment, and further decreased for a further five years after completing treatment. The authors recommended that: ‘An innovative intervention may be needed for [paediatric brain tumour] patients.’.

 Driving after detection of a brain tumour and the aftermath of treatment: Each State and Territory has laws regarding health conditions that might affect a person’s ability to drive safely. Seizures, paralysis, or having had a craniotomy are notifiable conditions within the meaning of these laws and regulations, and drivers are obligated to report them to their Driver Licensing Authority. In response to BTAA receiving enquiries by patients, BTAA committee member Mark Dalliston has described his experience in returning to drive, outlined the guidelines and provided links to them for each State and Territory, and provided a link to the Cancer Institute NSW brochure “Brain Tumours and Driving – A guide for patients and carers”. Mark had seizures, and hemiparesis affecting the entire right side of his body that required modification on the steering wheel, and he would be happy to discuss his experience with anyone wishing to regain their driving license in the aftermath of a craniotomy. The advice is available at: www.btaa.org.au/Driving.html.

 Brain Tumour Forum: BTAA Secretary Denis Strangman was invited to speak at a Brain Tumour Forum held at The Austin Hospital and organised by oncologist Dr Lawrence Cher and care coordinator Di Legge. BTAA circulated all its Victorian contacts about the meeting beforehand, which was attended by 85 patients and caregivers, including our contacts and those who are part of The Austin brain tumour support group. Denis's presentation is available here: http://www.btaa.org.au/TheAustin021111.htm

 BTAA satisfaction survey: In November we emailed the most recent 102 people who had been in contact with BTAA and sought their feedback about our services. 43 people responded and these are the main results: Most had initially emailed BTAA and had sought general information, including a copy of its main published resource “A Primer of Brain Tumours”. The three printed publications distributed by BTAA (i.e. the Primer, Depression Fact Sheet and "Brain Tumour" magazine) were all highly rated as ‘useful’ or ‘very useful’. Most respondents regarded BTAA and the information it provided as ‘helpful’ or ‘very helpful’. The BTAA’s principal published resource, the Primer, was viewed by many others apart from the original recipient. Many suggestions were made to improve the situation for others who might undertake the brain tumour journey. A number of respondents were disappointed at only connecting with BTAA later in their journey. There was support for more information and access to specialised nurses, and support for continued advocacy at Federal and State/Territory levels and the provision of national telephone access for brain tumour patients and their carers to medical advice for non life-threatening events.

 Brain tumours and adolescents and young adults: A media report by the Australian Institute of Health and Welfare about the above subject stated: "In the period 2003–2007, 8,783 new cases of reportable cancer were diagnosed among adolescents and young adults aged 15–29. This represented an age-standardised rate of 419 cases per million. Cancers in adolescents and young adults accounted for 1.7% of all cancer cases diagnosed in Australia. The most common cancer diagnosed in this age group was melanoma. During the same period, there were 1,018 cancer deaths in adolescents and young adults, comprising 9% of all deaths in this age group. The leading cause of cancer death was brain cancer."

The Report can be downloaded from: www.aihw.gov.au/publication-detail/?id=10737420603   Page 38 contains the significant statement: ‘Cancer mortality in adolescents and young adults showed a downward trend during the entire 1983 to 2007 period, with rates decreasing by 1.9% per year.  Figure 4.4 shows mortality trends in adolescents and young adults between 1983 and 2007, for the top four causes of cancer death. Mortality from the two leading causes of cancer death—brain and bone cancer—showed no significant trend, with rates remaining unchanged for the entire period between 1983 and 2007. In contrast, mortality from melanoma of the skin decreased significantly by 2.5% per year for the entire period, while mortality from acute lymphoblastic leukaemia decreased by 8.0% per year from 1999 onwards.’

 Change of contact details for the non-malignant brain tumour support group in Melbourne, Grey Matters: As stated in the BTAA E-News of September this year, an article on this unique support group was published in the Melbourne Leader in July(http://melbourne-leader.whereilive.com.au/news/story/carlton-support-group-for-brain-tumour-patients). The group recently advised BTAA that it has a new official email address to use for all enquiries: thegreymatters01@gmail.com

 On the subject of non-malignant tumours, BTAA is evaluating a new handbook from our Canadian colleagues focused on such tumours and may import copies for free distribution to interested patients and families in Australia.

 Please advise BTAA of other subjects you would like to see described and published on the BTAA website.

 A list of known support groups in Australia by State and Territory can be found at:www.btaa.org.au/support_groups.html  Please contact BTAA if you know of a support group in Australia not listed on this page.

 BTAA Chair address to the Paperchain Bookstore Manuka Year 10 Excellence Awards, ACT: BTAA Chair Matt Pitt gave the ‘returning student’ address at the awards in which public school year 10 students from all high schools across the ACT received. The speech emphasised the importance of maintaining an open mind about areas worthy of excellence, the benefits of humility and listening to others, and the need to continually seek out inspiration. Matt Pitt was greatly honoured to be invited to the awards, and a transcript will be published on the BTAA website shortly. 

 Note that BTAA publishes all E-News editions on its website. For example, the most recent previous E-News update can be accessed at: www.btaa.org.au/BTAAENewsSpring2011.htm

 BTAA wishes you a relaxing Christmas break with family and friends.

 Thank you for reading.

 Matt Pitt, Chair,  Brain Tumour Alliance Australia. Email: chair@btaa.org.au Phone: 0420 804 828

 Denis Strangman, Secretary, BTAA, Email: secretary@btaa.org.au. Phone 1800 857 221 (BTAA Freecall number).

 BTAA Postal Address: PO Box 76, Dickson, ACT, 2602, Australia. 

Freecall number: 1800 857 221 

 Brain Tumour Alliance Australia Inc is a not-for-profit organisation run by brain tumour patients and current and former caregivers. It is incorporated in the ACT (AO4837), ABN 97 733 801 179, and has been endorsed by the Australian Taxation Office as a Deductible Gift Recipient. You can download a membership form for BTAA from btaa.org.au/MembershipForm.htm  

 Note: The recipient addresses in this email are hidden for privacy reasons. If you do not want to receive updates from BTAA in the future please contact: chair@btaa.org.au

 BTAA is also on Facebook and Twitter: You can join in discussion and follow announcements from the BTAA Facebook page (‘Brain Tumour Alliance Australia’), and on Twitter (@BrainTumourAA).