REPORT BY DENIS STRANGMAN, CHAIR, BTA INC, TO THE AGM, NEWCASTLE, 13 AUGUST 2005.

  1. This is my last report as the foundation Chair of BTA Inc. I am unable to attend the AGM and will not be standing for re-election as Chair nor as a member of the national executive committee. In the future I will concentrate my activities on the International Brain Tumour Alliance (see later) and the various cancer and palliative care organisations in which I serve as a council or committee member. My position as Chair of BTA has been virtually an unpaid full-time job during the past two years and while it has been very rewarding it has also been very demanding.
  2. BTA was founded at a national workshop held in Sydney during the weekend 12-13 July. I was appointed as Chair of an interim committee of eighteen people. At the 2004 AGM, following the drafting of a constitution, the national executive committee was reduced in size to seven positions in an endeavour to make it more manageable. With the combination of the secretary/treasurer's positions six people comprised the national executive committee during 2004-2005: myself as Chair (ACT), Tim Downing (WA) as Vice-Chair, Laraine Cross (Newcastle, secretary/treasurer), Rochelle Firth (NSW), Susan Pitt (ACT) and Clare Vivian (Vic).
  3. In October 2004 Rochelle Firth tendered her resignation due to her other commitments and I would like to thank Rochelle for the valuable contribution she made during the 15 months she served on the national committee. I would also like to thank the Vice Chair Tim Downing who is also not standing for re-election to the national executive committee.
  4. In January 2005 Kaye Duffy (Newcastle) was co-opted onto the national executive committee vice Rochelle's vacancy.
  5. The deliberations of the national executive committee have been conducted for the most part via a closed e-mail discussion group since July 2003 and also by regular teleconferences since September 2004. During 2003/2004 there were 1481 messages exchanged in the e-mail discussion group and during 2004/2005 (to date) there have been 2045 messages. Many of these have been short messages conveying just a brief comment, however, the volume also reflected my attempt to keep the other members of the executive committee fully informed of what was happening and to strive for a consensus approach.
  6. An attempt was also made in 2004 to initiate votes by way of an on-line polling system within the Yahoo group but this was not pursued. Eventually, a form of electronic voting did emerge but in my opinion this does not cater sufficiently for the development, refinement and alteration by discussion of the wording of motions that are already on the table for voting. Also, the actual voting numbers comprised an even six people, with several tied votes being decided by the Chair's casting vote. I have recently suggested that we increase the size of the executive committee in order to widen our representation and to arrive at a committee size with an odd number. Such a move would require a "special resolution" and a general meeting and it is a suggestion I commend to the incoming Chair and new national executive committee.
  7. One of the most satisfying, if slightly challenging, endeavours of the past twelve months has been the importation of 500 copies of the patients' handbook "100 Questions and Answers about Brain Tumors" and 600 copies of the eighth edition of the "Primer of Brain Tumors", both from the American Brain Tumor Association in Illinois.
  8. I say "challenging" because, lacking a corporate credit card, we used with their permission the personal credit cards of the Vice Chair, Tim Downing, and a former executive committee member Bronwyn Beattie to pay the freight charges. In Bronwyn's case and again in my case in a similar episode on behalf of BTA in December 2004 the charge of several thousand dollars was registered twice. This is a further matter for examination by the incoming executive committee.
  9. Nevertheless, the importation and distribution of the 100 Q&A resource book, which was funded by a sponsorship grant from Schering Plough Pty Ltd, through the good offices of the late Herbert Stuerzl, represented an injection into the Australian brain tumour community of a resource which has a commercial value of over $15,000. That is not the amount we paid for the books but is based on the recommended retail price.
  10. 240 copies were sent to all key neuro specialists and treatment centres in Australia and a further 260 copies to patients and carers who contacted BTA via the Freecall number. In May, while visiting the ABTA headquarters in Illinois, I presented the Executive Director (Naomi Berkowitz) and President (John Hipchen) with a plaque on behalf of BTA in appreciation of ABTA's assistance in the provision over many years of patient handbooks to people in Australia, particularly prior to the founding of BTA.
  11. Hubert Stuerzl from Schering Plough was a great friend of the brain tumour community in Australia and I wish to pay tribute to his foresight and assistance to BTA. How ironic that he should be struck down by a glioblastoma brain tumour and pass away after just a short time.
  12. For the book distribution exercise Tim Downing (Vice Chair) created a bookplate which was affixed to each copy and which advised readers to contact BTA's Freecall number to obtain their own personal copy. Committee member Clare Vivian personally distributed copies of the book to many specialists in Melbourne and I am indebted also to other people in Perth, Hobart, Brisbane and Adelaide, who travelled around their cities personally delivering copies of the book. The main national distribution was by way of post from Canberra. In recent times national executive committee member Susan Pitt posted a complementary copy of the book to each major State library.
  13. The Freecall number - 1800 282 912 - was established in September 2004 and in the past 10 months more than 350 calls have been received, which have been answered either by myself or another national committee member, Susan Pitt also from Canberra, in my absence. Most calls have related to the book, and later, the Primer. It has been suggested that this figure is not reflective of the actual situation because some of these calls are simply of a short duration with callers leaving a message on the answering machine. That is correct but it needs to be pointed out that each of those messages generate in turn a further swag of outwards calls when they are followed up.
  14. There has been only one message call which was not followed up and that was because of an indistinct return number. Interestingly, callers invariably believe they are speaking to someone in their own State.
  15. In the lead up to the 2005 national workshop the Freecall number was also used to receive inquiries and bookings. The rental of the number and the costs of calls received (we pay, not the caller) has averaged $2.25 per call. I have not sought reimbursement for any extra phone costs apart from the outwards calls generated by messages left on the answering machine. Most requests for books have been actioned in under twelve hours from receipt of the request.
  16. Each copy of the resource is accompanied by a BTA brochure, BTA postcard, and a covering letter from myself as Chair inviting the recipient to join BTA. I understand that this has been a principal source of new memberships, and some donations, for BTA but I have not seen any study of the correlation.
  17. The distribution method whereby staff at relevant centres show the book to a patient or carer and point out the bookplate with the contact information, has the dual purpose of the staff preserving patient confidentiality and of BTA establishing contact with people who are interested in its work. I am not sure if this system would work as well if BTA was to simply deposit bulk copies of the resource at major treatment centres and rely on sympathetic staff distributing the book on our behalf. We need to establish an on-going relationship with patients and carers so that we can alert them to meetings and developments which may be of interest to them well after they have ceased regular contact with a treatment centre and the current distribution method achieves this.
  18. Because of the turnover of staff it is important that new staff in cancer treatment centres and neuro specialist wards are reminded regularly of the existence of this valuable resource. Members of the national executive committee in each major city really need to embark on a program of personal visits or phone calls in order to develop a relationship between BTA and key staff at the frontline. In February 2005 I was able to establish personal contact with a number of key staff at treatment centres at Liverpool, Royal Prince Alfred, Royal North Shore and Prince of Wales Hospitals, when travelling to Sydney to speak at a meeting of the North Shore Hospitals' brain tumour support group.
  19. Regrettably many of the subsequent callers to the Freecall number involve someone who has been diagnosed with a glioblastoma, of which there are about 700 new diagnoses in Australia each year. Many callers are so relieved to stumble across someone who knows what a glioblastoma is and I have tried to put them at ease because many are simply wanting to talk about the unwelcome journey they have commenced. I am prepared to continue answering the Freecall number and despatching copies of the Primer, in conjunction with Susan Pitt for those times when I am absent, but this will be up to the incoming executive committee of BTA and will also depend on my availability.
  20. Another matter which was the subject of great satisfaction during the past year has been the achievement of endorsement as a deductible gift recipient, which was notified to BTA by the Australian Taxation Office on 10 September 2004. This was granted with effect from 8 August 2003. I would like to express my appreciation to Sally Crossing (NSW) and Clive Deverall (WA) for their invaluable assistance to me in this exercise which, at times, became very complicated.
  21. The question of the parameters for the use of this status arose during the course of 2004 and 2005 when BTA received approaches from two individuals, with a view to utilising BTA's DGR status to "auspice" funds for brain tumour research donations which were intended for a third party. It was not possible to achieve a consensus within the executive committee as to the proper response and both approaches were not pursued.
  22. The issue again arose when I and the Vice Chair sought permission to use the DGR status to raise funds from outside BTA to help pay for the costs of our planned attendance at the World Neuro-Oncology Conference at Edinburgh. Again a consensus could not be achieved. Lacking funds to obtain professional paid advice I approached a person at Philanthropy Australia and, through their good offices, was put in contact with the national pro bono officer for one of the major taxation law companies in Australia.
  23. After several months of examination advice was received that the activities proposed by the two intending fund-raisers mentioned above, with certain provisios, should be deductible gifts, as would have been fund raising by the Vice Chair and myself. By that stage both Tim and I had attended and returned from the Edinburgh conference where we occupied two registration places paid for by a pharmaceutical company and each received a part contribution to our expenses from a donation given to BTA by a long standing friend and associate of myself. All other expenses were paid for by our own fund-raising or personal contributions and not by utilising BTA's DGR status.
  24. To avoid future complications similar to those which arose in relation to these three fund raising activities it may be useful to quote the relevant part of the advice: "... the funds raised under the first two examples should be deductible gifts, if BTA has sole discretion at to how these funds are to be disbursed and its decision must not be in any way dictated by the donors. It is, however, acceptable for a donor to express his or her preference as to the application of the gift, provided that BTA does not bind itself to follow the wish of the donor". Within the parameters of that advice there is plenty of room for BTA and potential donors to come to a mutually satisfactory agreement.
  25. Now that BTA has become better known within treatment centres and among the brain tumour community it has attracted several donations in memory of those who have passed on. In one such generous case the executive committee has decided, with the involvement of the donor, to devote the funding to the development of the BTA website.
  26. The BTA website was established by me in July 2003 and for most of the time was hosted on a server for which I paid a monthly subscription fee. No remuneration was sought for the hosting or maintenance of the website. It was a basic website containing essential contact information and occasional presentations and news. The hosting responsibility has now been assumed by Ross Symons (Vic) on servers which he owns and I am grateful to Ross for his generosity. The executive committee was keen to obtain further funding for professional development of the BTA website and, at the suggestion of the original donor mentioned above, made an application to the Paul Newman Foundation. That Funding Round closed on 30 June with the final decisions to be made in the USA. I have not heard of the outcome of the application. Another funding application involved a request under a small equipment scheme sponsored by the Australian Government but I understand that application has been unsuccessful.
  27. Within the area of donations an issue can sometimes arise concerning what the potential donor believes is a very worthy activity on which to spend funds but which might not accord with what officials of the organisation believe to be its top priorities. During the past twelve months there has been much discussion within the national executive committee about how we should arrive at a priority listing of the work challenges facing the organisation and I anticipate that will be further debated in the next twelve months.
  28. On 6 June 2005 I was very pleased to receive a letter from the Federal Department of Health and Ageing informing me that BTA would be offered a four year grant of $69,100 under the Cancer Support Groups Grants program to develop and improve the information available to people with brain and CNS tumours. I have subsequently signed the contract for this project and the first payment of $5,000 has been received. Our application was drafted in the main and coordinated by executive committee member Susan Pitt and I am sure that our success is due in no small part to the merit of our application and its skillful drafting. However, it needs to be stated that government funding for the brain tumour community is long overdue and this is the first funding from any government, State or Federal, which BTA has received.
  29. The terms of the contract require the appointment of a project committee and regular reporting to the Department of Health and Ageing and I am sure that this will occupy much time of the incoming national executive committee. While the funding will give BTA room to manoeuvre and to engage in activities which it has been previously unable to do so, it could also generate two challenges: (1) there is a danger that commitment to the project and its implementation may leave little time for involvement in other activities, including advocacy work; and (2) because the brain tumour community has been starved of any government funding for so many years there is an obligation, I believe, for the implementation of the project to be undertaken in a manner that involves as many components of the wider brain tumour community as is possible, while honouring the obligations contained within the contract.
  30. Another success during the past twelve months was the inclusion of the new concomitant therapy of radiation therapy and temozolomide on the list of subsidised PBS items. Prior to this decision brain tumour patients were having to pay thousands of dollars each month to obtain the chemotherapy as a private patient. They will now only pay a $28.60 co-payment per prescription.
  31. That result was achieved after much work and representations by many people, particularly from within the medical community. BTA circulated a petition, issued media releases, and wrote letters. Many members of BTA were very active in this campaign and I regularly received petitions generated from our website and elsewhere which were on-forwarded for presentation to Federal Parliament. The approval process was achieved in record time and I believe that this speedy processing may have resulted in an extra 150 newly diagnosed glioblastoma patients having an opportunity at seeking a chance for extended survival. Patients in New Zealand are currently fighting a desperate battle to achieve a similar outcome and I have travelled to Wellington in another capacity to assist them with their efforts.
  32. As Chair of BTA I received several invitations during the past twelve months to make presentations at brain tumour and cancer gatherings. In November 2004 I gave a presentation at the neuro speciality meeting of the Clinical Oncological Society of Australia (COSA) conference in Canberra. In March 2005 I gave a presentation at the Glioma 2005 Conference in Sydney and in the same month addressed a Cancer Voices Conference at Wellington, New Zealand. In November 2004 I made a private visit to the UK and Ireland where I also promoted BTA at a Brain Tumour Conference at Wimbeldon, at a UK Cancer Voices meeting at Liverpool, and at the World Cancer Conference meeting at Dublin.
  33. Attempts to establish links with and make BTA better known in several other professional areas were not as successful. Former national executive committee member Rochelle Firth ensured that BTA material was made available at a large teaching seminar for nurses which she coordinated and we were given permission to provide our information brochure to a national gathering of neurologists in Perth but we were unable to obtain permission to make anything available to a national conference of neurosurgeons held at Newcastle, which was a disappointment.
  34. In relation to the meeting of COSA scheduled for later this year I was invited to serve on an advisory committee planning the half-day consumer forum scheduled to be held prior to the scientific conference. On learning that the pre-eminent neuro-oncologist Dr Skip Grossman from the USA was a scheduled speaker for COSA I have subsequently recommended that the Queensland Cancer Fund (QCF) and BTA hold a jointly-sponsored meeting for Brisbane brain tumour patients and carers during Dr Grossman's visit. At the time of writing Dr Grossman has advised the QCF that he is considering its request to hold the meeting on Monday 14 November. If Dr Grossman accepts it will be an excellent opportunity to cement our connection with the QCF, first established by our joint sponsorship of a similar meeting in November 2003. This is another matter for consideration by the incoming national executive committee.
  35. During my private visit to the UK I discovered that brain tumour activists in the UK were eagerly awaiting the World Neuro-Oncology Conference to be held at Edinburgh in May when 1200 delegates from many countries were expected to attend. This prompted me to think of the concept of the promotion of an international alliance of brain tumour support, advocacy and information groups. This became known as the "international collaboration project".
  36. The project eventually came to realisation when Tim Downing and I travelled to Edinburgh and, in collaboration with Mrs Kathy Oliver of Surrey and others, particularly Mrs Zoe Hoppe, executive officer of Brain Tumour UK, 50 people from eleven countries met during the Edinburgh conference and formed the International Brain Tumour Alliance (IBTA). The meeting appointed myself as Chair and Mrs Oliver as Secretary.
  37. It was as Chair of that organisation that I travelled again to Wellington to arrange a meeting with the Minister of Health, Hon Annette King, together with two New Zealand brain tumour patients, to argue for similar treatment for NZ patients as had been achieved in Australia for the concomitant therapy for glioblastomas. I was grateful that a group of Wellington athletes covered my expenses and provided accommodation in return for my conducting a track and field coaching clinic on the day prior to my meeting with the Minister. No BTA funds were expended on this visit to our Tasman neighbours. I feel very sorry for NZ brain tumour patients, the man who accompanied me to see the Minister is paying $6,000 NZ per month for his treatment, and the woman is paying $4,000. Their friends and relatives are just about at the end of their tether.
  38. The IBTA has a number of projects on the drawing board, including the launch of an international competition to design a suitable logo for the group and a distinguished panel of judges has been assembled, which includes neurosurgeon Dr Peter M Black from the USA and artist Tarsh King and her husband Chris from Melbourne. Tarsh's painting appears on the BTA postcard which is distributed as a fund-raising activity for medical research into brain tumours. The question of the expenditure of these funds and any other funds raised for medical research is another subject that needs to be examined by the incoming national executive committee. I am also appreciative of the generous donation of three prints of another painting by Tarsh which were presented to the medical presenters at the recent national workshop. These prints were professionally framed by BTA members Andrew and Sandra Jakeman of Wentworth Falls (NSW) as a tribute to their 18 year old son Rueben who passed away as a result of a glioblastoma.
  39. On 20 April 2005 six members of BTA - Susan Pitt and her son Matt, Clare Vivian, myself, and John and Sue Paice - appeared before the Senate Committee Inquiry into services and treatment options for person with cancer. This followed a carefully drafted submission to the Inquiry which is available on-line via the BTA website and represents an agreed position of what needs to be done to achieve a better outcome for brain tumour patients and their carers. In the absence of anything else this six-page submission represents a "position paper" on a range of issues facing brain tumour patients and their carers.
  40. The hearing, which was listened to attentively by the Senators and which went overtime, followed the summary contained in the written submission: "Tumours of the brain and central nervous system (CNS) can have a devastating effect on the patient, their family, and carers. The prognosis for a person with a primary, malignant tumour is poor. The range and effectiveness of available treatments is minimal. There is insufficient expertise and specialisation. Much more could be done in the areas of research, clinical practice, and support for patients and carers." I would like to particularly thank Matt Pitt and John and Sue Paice for their evidence which was clearly appreciated by the committee members. John, who has a glioblastoma brain tumour, later that day suffered two grand mal seizures probably as a result of the stress and excitement.
  41. On the weekend 16-17 July the third national workshop organised by BTA was held at the Royal Children's Hospital (Saturday) and the Royal Melbourne Hospital (Sunday). I have not yet been advised of the total attendance but at least 76 people attended either one or both days of the Workshop and came from all States except Western Australia.
  42. The Workshop was coordinated in the main by committee member Clare Vivian with the help of a number of Melbourne-based people, including Ross Symons, Marg Henley, Gabrielle O'Connor and Kylie Cursio. National Executive Committee member Kaye Duffy secured a tote bag with BTA logo for each registrant.
  43. The Workshop was preceded by a general meeting of BTA. A special meeting of health workers who are involved with brain tumour patients and carers on a regular basis was held during the lunchtime on the Saturday. This latter meeting was attended by twelve health workers, including a nurse counsellor from the Wellington Cancer Centre in NZ who is the process of establishing a brain tumour support group. The links established at the meeting of health workers will be invaluable in progressing the grant received from the Australian Government, which obliges us to promote the development of support groups around Australia and the distribution of information aids.
  44. It proved very difficult to obtain pre publicity for the Workshop in the main Melbourne metropolitan media, despite strenuous efforts by a number of people, including Kylie Cursio and Ross Symons. A promotional story written up by a journalist with a major newspaper was abandoned when a more important news story crowded out all general reporting. The development of a media contact list and the identification of relevant journalists is another task awaiting the incoming national executive committee. Valuable publicity was obtained by some Melbourne supporters in several suburban publications but invariably those newspapers seek to write the story around a person or family living in its geographical distribution area and not too many people are willing to promote themselves or their condition in this way.
  45. General publicity for BTA is difficult to achieve. While several media releases were issued nationally during the past twelve months and more than 200 copies of a Workshop media release were distributed to all Victorian outlets either by fax or e-mail, very little was obtained by way of publicity. In an endeavour to keep our membership informed of what was happening Tim Downing came up with the idea of a back and front A4 "BTA in Brief" newssheet and printed three issues of this publication in Perth for posting to members. No issues of Brain Storm News were produced during the past twelve months and my long hoped for "display edition" of a national newsletter never materialised.
  46. The Melbourne Workshop was our first major venture outside of the Sydney metropolitan area, apart from a regional meeting in Melbourne in September 2003 and a similar meeting in Brisbane in November 2003. The Workshop was supported in our promotional brochure by the Childrens Brain Tumour Association (CBTA) and Brain Foundation Victoria (BFV). Sponsorship funds from the following organisations and individuals enabled BTA to offer a full range of catering and a very reasonable registration fee and I would like to thank them for their generosity: Matt and Sue from Peaches N Cream, Brain Foundation Victoria (particularly CEO Sharon Strugnell and administrative officer Rachel Wilken), Dr Charlie Teo and his Centre for Minimally Invasive Neurosurgery (CMIN) in Sydney, Schering Plough, Dr Kate Drummond, Stryker Pty Ltd, and Roche Pharmaceuticals.
  47. An intended outcome of holding the Workshop in Melbourne was to aim for a "legacy group" that could continue the work of BTA in the Victorian environment, playing its part in serving on relevant advisory bodies, representing patients and carers and making representations about Victorian-specific issues. With the emerging development of a cancer consumers movement this matter is quite important. I serve in an individual capacity on a national advisory sub-committee monitoring this project and I understand Clare Vivian has joined a Victorian-based group which was established at a recent meeting sponsored by the Cancer Council Victoria.
  48. The legacy group is another activity which will need to be considered by the incoming national executive committee as is the development of groups in other States. Only recently a concerned health worker contacted me suggesting that BTA make a submission to one of the current inquiries into the Queensland hospital system following the cessation of administrative backing for a brain tumour support worker in a major Brisbane hospital. While it is quite possible for BTA to make such a submission, should any of its officials have the necessary time, a submission would probably be listened to more carefully if Queensland residents and electors were associated with it.
  49. Conclusion: Finally I would like to thank all members of the national executive committee I have worked with during the past two years, including the secretary/treasurer Laraine Cross who has maintained the accounts, the BTA Post Office Box and various other secretarial duties, together with her full-time employment. The departure of Rochelle and I leaves only Laraine Cross and Susan Pitt from the original committee, but I am certain that some "corporate memory" will be retained.
  50. While I will be concentrating on my work with the international group I do not intend to neglect completely a continuing involvement with brain tumour matters in the wider Australian scene and will intervene when suitable opportunities arise. A BTA member asked me recently "Just what has BTA done for the ordinary person with a brain tumour?" I hope this report will go some way to answering that question.

6 August 2005