BTAA e-News December 2017
Brain Tumour Alliance Australia E-news
BTAA is the umbrella organisation providing a strong national consumer voice for brain tumour patients, carers and their families. BTAA’s aim is to CONNECT, SUPPORT, REPRESENT, & INFORM the brain tumour community.
In this issue:
Merry Christmas!
Support is Available
Important Dates
The Third World Summit of Brain Tumour Patient Advocates
The Thoughts of Stephen
Brain Tumour ‘Benefits’?
Recommendations of the Senate Select Committee into Funding for Research
Patient Care: just a reminder for us all
AIHW Brain and Other Central Nervous System Cancers Report
Palliative care consultation paper: survey responses required by 15 December 2017
BTAA Member Sponsorship and Educational Grants
New National Clinical Trial Platform: Clinical Trial Refer
Link to the International Brain Tumour Alliance monthly e-news
Donate to the Nicola Scott Educational Fund
Join BTAA as a financial Member
New Resources from Cancer Australia
Help us – Donations and fundraising
Useful links
Merry Christmas
Hi Everybody
Welcome to the final e-news for 2017.
It’s been a massive year this year, we’ve collectively covered a lot of ground and we want to thank you for your continuing commitment to BTAA.
This year is full of highlights – combined, we’ve done so much:
- BTAA maintained a presence at this year’s COGNO (Cooperative Trials Group for Neuro-Oncology) meeting in Melbourne during October. The COGNO newsletter is available here: GOGNO Newsletter
Information about the program, speakers and some of the papers presented are available here: COGNO Conference 2017 - The BTAA and a number of members made submissions to the Senate Select Committee into Funding for Research into Cancers with Low Survival Rates earlier in the year and the report has now been tabled.
Its findings are available here: Senate Report - Catherine Hindson our Chairperson, attended the IBTA World Summit of Brain Tumour Patient Advocates in London in October. See a report in this issue.
- The work of our Cancer Australia Grant Team continues as they develop multiple language resources for all Australian brain tumour patients and their families and carers. Focus groups have been conducted across the nation to focus developing the best resources to meet patient and carers needs. Well done to Trish Berman and Dr Dannette Langbecker who are our project leaders, and the whole team who have contributed with so much hard work.
- The Sydney Support Group operating from the Chris O’Brien Lifehouse has gone from strength to strength under the guidance of our enthusiastic co-ordinators, Steve Newman and Alice Parsons. There have been a number of great speakers and strong discussions across a range of brain tumour care and support issues.
- There have many outstanding fund-raising events throughout the year contributing to brain tumour research and support organisations Our most recent was one run here in Canberra by committee member Billy Williams and the Ghana Association to commemorate Billy’s wife Lyn who passed away from a brain tumour earlier in the year.
- The fabulous Tour De Cure group travelled to Canberra recently and presented a cheque of $10,000 to the BTAA to support the development of more support groups across Australia. This donation will go a long way to ensuring our dream of an active support group in every capital and major centre across Australia.
- Our website is undergoing a major revisioning by brain tumour patient, committee member and IT expert Stephen Newman. Keep checking our webpage for updates.
All the best to you and your families however you celebrate this time of year – stay safe, stay well and be happy.
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Support is Available
To talk with experienced caregivers, call BTAA on the Freecall number: 1800 857 221, and see the support groups available in your local area at www.btaa.org.au – look for support organisations.
Cancer Connect telephone (13 11 20)
Brain Tumour Patients Telephone Support Group Freecall 1300 755 632 Monday - Friday 9 am - 5 pm or email tsg@nswcc.org.au
Cancer Connections (online) www.cancerconnections.com.au
Email btaa@shout.org.au
See the other support organisations in your area here.
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Important Dates
| Australian Brain Tumour Action Week | 6-12 May 2018 |
| COGNO Annual Scientific Meeting Brisbane Across Australia | 7-8 Oct 2018 |
| IBTA Brain Tumour Awareness Week World wide | 20-27 Oct 2018 |
| Society for Neuro-Oncology New Orleans | 15-18 November 2018 |
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The Third World Summit of Brain Tumour Patient Advocates
I recently represented BTAA at the Third World Summit of Brain Tumour Patient Advocates held in London in October 2017. BTAA received funding from IBTA to attend. The Summit was attended by 84 participants from 30 countries. Participants included patient advocates (some of whom were patients or caregivers/former caregivers), medical and research professionals, and representatives of the pharmaceutical industry. The presence of a diverse group of stakeholders ensured that there was an educational, collaborative, and transparent focus on some of the biggest issues facing the international brain tumour community today.
There was a wide range of topics including:
- State of the Art surgical, radiation and chemotherapy treatments
- The need for patient advocacy in basic aspects of palliative care and end-of-life issues
- The need to improve early accurate diagnosis. To this end UK is developing an e-learning module for GP’s and Optometrists
- Various countries discussed their brain tumour issues
- Poor funding in research
- No funding for chemotherapy drugs in Mexico
- In Ghana, there is no funding for brain surgery so families have to provide the money for surgery. Funding is channelled into infectious diseases
- The challenges in serving a geographically-dispersed brain tumour community in Australia
The day before the summit there was a meeting for the sub-Saharan Africa. The aim of the meeting was to organize a neuro-oncology educational course/conference in sub-Saharan Africa in 2018, to actively involve the sub-Saharan patient advocacy community in enhanced efforts to raise awareness of the challenges of brain tumours for patients and their families and to hopefully start to build the foundations for a Sub-Saharan Africa multi-stakeholder neuro-oncology society.
It was hoped that the collective energy, determination and resources would powerfully combined to improve the situation for brain tumour patients and their families in sub-Saharan Africa and to try to address some of the inequities and huge unmet need which exist in that area of the world.
It was a wonderful opportunity to meet and share information and experiences with advocates from all over the world. The Summit is held bi-annually.
Catherine Hindson
Chair BTAA
The Thoughts of Stephen
Follow committee member and Sydney Support Group leader’s regular posts on all things brain tumour, cycling and the world here: Link to Stephen's Thoughts
Definitely a must-read site for people navigating the brain tumour world for the first time.
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Brain Tumour 'Benefits'?
It is often said that having a child together makes a good marriage even better and a bad marriage worse. I believe that having a spouse with a brain tumour amplifies that statement tenfold. In my view, adding a brain tumour into the mix forces you to either find a way to work together to overcome all of the obstacles and hurdles or the marriage fails.
I don’t believe that anyone should ever be blamed if the marriage fails due to a brain tumour, it affects the entire family and sometimes causes an insurmountable rift. In my case, there have been times when my husband Mark has been left unable to speak. My being a strong communicator made those periods the hardest because, for me, communication is vital. We struggled through by using the computer, Mark would type and I would respond verbally, and thankfully those times only lasted weeks or months, not years. But we have had our share of difficulties with Mark’s physical and cognitive limitations and we have had to work incredibly hard to overcome them and still have a very happy marriage.
I remember watching an interview with Gail O’Brien, one of my idols and an incredibly inspirational woman in so many ways. She said something that, at the time, made no sense to me. She said that she was able to feel gratitude for her husband’s brain tumour. It was in the year of Mark’s diagnosis, he was still severely affected by the surgery and subsequent treatment and our lives were in absolute turmoil, just getting by one day at a time. I remember thinking “how can you possibly be grateful for this THING that ruins people’s lives and rips families apart?” She went on to explain that her husband, Chris O’Brien, was a brilliant surgeon but worked extremely long hours and was often called away from his family to operate late at night and on weekends. Once he was diagnosed, he stopped work and Gail and Chris spent more time over the next three years than they had ever spent together. I believe that in that time of gratitude, they would have developed a deep sense of appreciation and admiration for each other’s strengths and abilities and worked as a team through all of the challenges they faced. In essence, I now understand what Gail meant.
Being a carer is hard. But it’s not without its rewards. I can’t say I’m grateful for Mark’s brain tumour but I understand how it can make a good marriage even better.
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Recommendations of the Senate Select Committee into Funding for Research into Cancers with Low Survival Rates
Our team are still looking closely at the report, but in the meantime, we think it is important that you see the recommendation summary. A special thanks to Senator Bilyk for her role in leading the committee.
The full report is available here: Senate Report
The recommendations of the report are as follows:
- The committee recommends that the Chief Executive Officer of the National Health and Medical Research Council considers identifying low survival rate cancers as a National Health Priority Area in the upcoming 2018-19 Corporate Plan.
- The committee recommends that the National Health and Medical Research Council introduces the option for extensions to the duration of funding to recipients of research grants, provided that these recipients satisfy certain performance criteria.
- The committee recommends that the Australian government improves AustralianClinicalTrials.gov.au so it is more accessible and user-friendly.
- The committee recommends that state and territory governments consider:
- allowing low survival rate cancer patients participating in clinical trials to access patient travel subsidy schemes; and
- agreeing on consistent subsidy rates based on the distance and method of travel, and the average cost of accommodation in the city in which the patient is participating in the trial.
- The committee recommends that Australian governments improve access to international clinical trials for people with low survival rate cancers, including by:
- exploring ways to reduce the financial barriers to accessing international trials to the extent possible; and
- further developing the existing capacity for international collaboration on trials.
- The committee recommends that Australian governments, as a priority, further streamline ethics and governance approval processes for clinical trials, particularly where those processes differ between states and territories, and public and private research institutions.
- The committee recommends that the National Health and Medical Research Council develops a standard template and associated guidelines, including timeframes, for ethics and other governance approvals for consideration and possible adoption by each state and territory.
- The committee recommends that, through the Council of Australian Governments Health Council, the Australian government leads a process to ensure that arrangements for transitioning children and young people from paediatric to adult oncology services occurs in a consistent and co-ordinated way that preserves continuity and quality of care in the best interests of each individual patient.
- The committee recommends that the Australian government undertakes communication activities targeted at the public with the objective of reducing the amount of time taken to detect and diagnose low survival rate cancers.
- The The committee recommends that the Australian government works in collaboration with the Royal Australian College of General Practitioners and the Australian Medical Association to improve awareness of low survival rate cancers amongst general practitioners, including through continuing professional development.
- The committee recommends that the Australian government, in collaboration with state and territory governments:
- considers expanding the Australian Cancer Database to capture all cancers, including benign tumours of the brain and other parts of the central nervous system;
- in so doing, consults with medical researchers to identify what clinical and lifestyle data might be included in order to benefit oncology research; and
- addresses current barriers to data collection and considers ways in which data collection can be improved across Australia, in both public and private health settings.
- The committee recommends that the Australian government gives serious consideration to implementing a national network medical and population biobank that includes tumour samples and relevant clinical and lifestyle data associated with each tumour sample.
- The committee recommends that the Australian government ensures ongoing funding for genomic research into low survival rate cancers.
- The committee recommends that the Australian government implements any recommendation from the Medical Services Advisory Committee to list genetic tests for low survival rate cancer patients on the Medicare Benefits Schedule so that these tests are routinely available to these patients and reimbursed.
- The committee recommends that the Therapeutic Goods Administration, if necessary following the medicines and medical devices review, and the Pharmaceutical Benefits Advisory Committee:
- (re-)examine their assessment processes and the appropriateness of those processes for innovative treatments for low survival rate (LSR) cancers, such as immunotherapies; and
- pending that examination, consider adopting more flexible and innovative approaches to approving innovative treatments for LSR cancers and assessing them for listing on the Pharmaceutical Benefits Scheme. Recommendation 16 5.126 The committee recommends that the Australian government ensures funding is available to researchers investigating whether existing drugs may be suitable for treating low survival rate cancers.
- The committee recommends that the Australian government works with industry to consider a mechanism to repurpose drugs.
- The committee recommends that the Australian government considers a mechanism to permit access to and properly supervise use of off-label drugs for low survival rate cancer patients without further treatment options, on compassionate grounds.
- The committee recommends that the Therapeutic Goods Administration and Pharmaceutical Benefits Advisory Committee examine the appropriateness of their approval and assessment processes for existing drugs repurposed for use in low survival rate cancers.
- The committee recommends that the Australian government considers whether the Medical Services Advisory Committee and Pharmaceutical Benefits Advisory Committee processes can be streamlined where a diagnostic test and treatment for a low survival rate cancer are co-dependent.
- The committee recommends that the Australian government, in conjunction with its state and territory counterparts, works to improve access to specialist cancer care co-ordinators or nurses for low survival rate cancer patients in every state and territory.
- The committee recommends that the Australian government asks the Medical Services Advisory Committee to review the criteria for reimbursement of ongoing diagnostic testing for low survival rate cancer patients.
- The committee recommends that the Australian government further simplifies and streamlines the application process for low survival rate cancer patients and their carers when seeking to access the Disability Support Pension, or carer allowance or payment.
- The committee recommends that the federal, state and territory governments develop and implement a comprehensive Australia-wide strategy to increase 5-year survival rates for low survival rate cancers to above 50 per cent by 2027:
- taking into account the recommendations in this report;
- consulting with researchers, clinicians, patients and patient groups;
- considering the roles of research, early diagnosis and access to medicines; and
- assessing the applicability of international approaches, such as the Recalcitrant Cancer Research Act of 2012 (US), to the Australian context.
- The committee recommends that annual progress reports on the development and implementation of an Australian strategy to improve survival rates for low survival rate cancers are provided to the Council of Australian Governments Health Council and made publicly available.
Patient Care: just a reminder for us all
Not everyone recognises having a brain tumour as having an aquired brain injury but the damage caused by the tumour itself and by the treatments, surgery, chemo or radiotherapy, for some all three, can add up to a very serious brain injury. This article from Healthcaresolutionsplus will resonate with many people living with the aftermath. Please share it with friends, family and anyone you think needs to read this!
"I need a lot more rest than I used to. I’m not being lazy. I get physical fatigue as well as a “brain fatigue.” It is very difficult and tiring for my brain to think, process, and organize. Fatigue makes it even harder to think.
My stamina fluctuates, even though I may look good or “all better” on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.
Brain injury rehabilitation takes a very long time; it is usually measured in years. It continues long after formal rehabilitation has ended. Please resist expecting me to be who I was, even though I look better.
I am not being difficult if I resist social situations. Crowds, confusion, and loud sounds quickly overload my brain, it doesn’t filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.
If there is more than one person talking, I may seem uninterested in the conversation. That is because I have trouble following all the different “lines” of discussion. It is exhausting to keep trying to piece it all together. I’m not dumb or rude; my brain is getting overloaded!
If we are talking and I tell you that I need to stop, I need to stop NOW! And it is not because I’m avoiding the subject, it’s just that I need time to process our discussion and “take a break” from all the thinking. Later I will be able to rejoin the conversation and really be present for the subject and for you.
Try to notice the circumstances if a behavior problem arises. “Behavior problems” are often an indication of my inability to cope with a specific situation and not a mental health issue. I may be frustrated, in pain, overtired or there may be too much confusion or noise for my brain to filter.
Patience is the best gift you can give me. It allows me to work deliberately and at my own pace, allowing me to rebuild pathways in my brain. Rushing and multi-tasking inhibit cognition.
Please listen to me with patience. Try not to interrupt. Allow me to find my words and follow my thoughts. It will help me rebuild my language skills.
Please have patience with my memory. Know that not remembering does not mean that I don’t care.
Please don’t be condescending or talk to me like I am a child. I’m not stupid, my brain is injured and it doesn’t work as well as it used to. Try to think of me as if my brain were in a cast.
If I seem “rigid,” needing to do tasks the same way all the time; it is because I am retraining my brain. It’s like learning main roads before you can learn the shortcuts. Repeating tasks in the same sequence is a rehabilitation strategy.
If I seem “stuck,” my brain may be stuck in the processing of information. Coaching me, suggesting other options or asking what you can do to help may help me figure it out. Taking over and doing it for me will not be constructive and it will make me feel inadequate. (It may also be an indication that I need to take a break.)
You may not be able to help me do something if helping requires me to frequently interrupt what I am doing to give you directives. I work best on my own, one step at a time and at my own pace.
If I repeat actions, like checking to see if the doors are locked or the stove is turned off, it may seem like I have OCD — obsessive-compulsive disorder — but I may not. It may be that I am having trouble registering what I am doing in my brain. Repetitions enhance memory. (It can also be a cue that I need to stop and rest.)
If I seem sensitive, it could be emotional lability as a result of the injury or it may be a reflection of the extraordinary effort it takes to do things now. Tasks that used to feel “automatic” and take minimal effort, now take much longer, require the implementation of numerous strategies and are huge accomplishments for me.
We need cheerleaders now, as we start over, just like children do when they are growing up. Please help me and encourage all efforts. Please don’t be negative or critical. I am doing the best I can.
Don’t confuse Hope for Denial. We are learning more and more about the amazing brain and there are remarkable stories about healing in the news every day. No one can know for certain what our potential is. We need Hope to be able to employ the many, many coping mechanisms, accommodations and strategies needed to navigate our new lives. Every single thing in our lives is extraordinarily difficult for us now. It would be easy to give up without hope."
Contributed by Alice Parsons
AIHW Brain and Other Central Nervous System Cancers Report
Read the first ever official statistics report just on brain tumourss. Includes first ever effort to include data on the so called benign tumours in chapter 8. About time and thanks #AIHW who got it together for Senate Inquiry Info. It's a must read for health policy makers. Read the report here: AIHW Report
Palliative care consultation paper: survey responses required by 15 December 2017
The NSW Ministry of Health has released the Palliative Care Roundtables Consultation Paper. The paper has resulted from the ten roundtable and two community consultations on palliative care held across the state between April and October this year. The consultation sessions, a number of which were attended by members of Cancer Voices NSW, sought feedback from the community on what works well in palliative care, and the identification of priorities for the future.
The consultation paper can be accessed at Palliative Care Roundtables Consultation Paper. Priorities raised by participants included:
- making palliative care more patient-centred
- providing flexible access to care through a range of strategies
- ensuring a skilled workforce is linked with integrated care and support
- providing support for patients, families and carers
Reports from each of the ten roundtables, held in Sydney, Orange, Lismore, Kempsey, Broken Hill, Tamworth, Griffith, Queanbeyan, Kiama and Newcastle showing the priorities of those communities for palliative care services, have also been published online.
The Ministry of Health is now seeking broader comment on these priorities. Member of Cancer Voices NSW are therefore encouraged to read the consultation paper and complete a short survey, which can be accessed at health.nsw.gov.au/palliativecare or printed and mailed to NSW Health. The survey should take about ten minutes to complete. It needs to be submitted by Friday, 15 December 2017.
The survey is designed to gather input from individuals, not from organisations at this point. In that regard, you are encouraged to distribute the consultation paper and survey to family and friends.
The release of the consultation paper and the running of the survey are another important avenue for Cancer Voices NSW to speak on behalf of people affected by cancer. It is an ideal opportunity for us to help shape the NSW Government’s new palliative and end of life care policy that is planned for release in 2018.
Murray McLachlan
Executive Committee Member
Cancer Voices NSW
info@cancervoices.org.au
www.cancervoices.org.au
BTAA Member Sponsorship and Educational Grants
BTAA offers two types of sponsorship to our financial members. Educational Grants are available to our financial members who are nurses and other allied health professionals, or researchers, with a particular interest in supporting people living with brain tumours. Grants are available to attend events like COGNO in Australia and SNO, ISPNO and ASNO internationally. Download the guidelines here.
BTAA reimburses expenses up to $600 for a national event or $1,500 for an international event, upon presentation of receipts for travel, accommodation or registration. More $ may be available at the discretion of the BTAA committee.
Thanks to the Nicola Scott Educational Trust for the educational grant funding.
BTAA also provides grants to our financial members who provide peer to peer support. Financial assistance is provided to enable our members to attend the BTAA National Summit, held in conjunction with COGNO. e.g. Those who run support groups, those who volunteer for the Cancer Connect Service, those who manage a dedicated online support page.
Grants are on a case by case basis and depend on the distance to be travelled, other income sources etc.These grants are paid for out of BTAA's donation revenue. Thank you to our donors.
It is easy to become a financial member of BTAA - see here.
For more information on our grants and educational grants contact The Treasurer, c/- SHOUT, PO Box 717 Mawson, ACT, 2607.
Email btaa@shout.org.au cc Catherine@hindson.org.au
New National Clinical Trial Platform: Clinical Trial Refer
BTAA are monitoring the progress of the Clinical Trial Refer – a platform for any clinical trial portfolio. The ClinTrial Refer website and social media outlets was officially launched on 27th Sep 2016. You can now search through all existing apps for trials on the website at www.clintrial.org.au. Rolland Suen has been appointed as the ClinTrial Refer Project Manager. Funds for this position have been provided by the SESLHD and SLHD. ClinTrial Refer platform will increase recruitment to clinical research trials by collaboration.
http://www.clintrial.org.au/index.php?option=com_content&view=article&id=3:new-project-manager&catid=8&Itemid=156
Link to the International Brain Tumour Alliance monthly e-news
Keep up with the latest international brain tumour news through our parent / partner world organisation by clicking here: IBTA E-news
Donate to the Nicola Scott Educational Fund
The Nicola Scott Educational Fund enables BTAA to support travel grants for national and international events. Read more about the educational grants here.
See the Nicola Scott fundraising campaign and all the current fundraising for the BTAA here. 100% of the funds donated through these fundraisers go to BTAA to support those living with brain tumours.
Join BTAA as a financial Member
Become a financial member of BTAA and help us grow. We need people to help on our subcommitteeshttp://www.btaa.org.au/page/23/become-a-member
About brain tumours and key resources
See BTAA’s summary of resources, particularly useful for those newly diagnosed.
New resources from Cancer Australia
Do read the new guide Finding the Words – starting a conversation when your cancer has progressed to assist with the transition to palliative care. Palliative helps people live as well as possible, relieve symptoms and improve day to day life. Well before end of life. https://canceraustralia.gov.au/about-us/news/support-transition-palliative-care-people-metastatic-cancer
See the new Cancer Australia web site https://childrenscancer.canceraustralia.gov.au/
Help Us – Donations and Fundraising
Chair Catherine Hindson was delighted to receive a large donation from a generous person in Melbourne recently, the second such donation. Thanks to this person who wants to remain anonymous. Thank you very much.
You can help BTAA by fundraising for us. See how here. http://www.btaa.org.au/page/21/fund-for-btaa
Make a contribution by donating to one of our current fundraisers here http://www.btaa.org.au/my-fundraising
The funds raised by the Nicola Scott Education Grant in memory of Nicola help us to send nurses and allied health professionals to educational events, like COGNO and SNO.
http://www.btaa.org.au/my-fundraising/18/nicola-scott-educational-support-grant
Useful links - research and support
Clinical trials, and links to many brain tumour or general cancer organisations.
https://www.btaa.org.au/page/29/useful-links
BTAA’S FREECALL – 1800 857 221.
Thank you for reading.
Editor: Philip Steel
Assistant Editor: Mark Dalliston
Brain Tumour Alliance Australia
btaa.org.au
BTAA on social media
Facebook: Brain Tumour Alliance Australia
Twitter: @BrainTumourAA
