GLIOMA 2005 CONFERENCE, Sydney 17-18 March 2005

The role of the brain tumour support group - Presentation by Denis Strangman (Chair, BTA Inc)

I would like to thank the conference organisers for inviting me to speak about the role of the brain tumour support group. It is evidence of a willingness to include consumers in the equation.

In a message to a national workshop which Brain Tumour Australia held last June Prime Minister John Howard acknowledged that brain tumours are "among the most confronting and challenging of medical conditions".

A similar recognition has been expressed by the Federal Health Minister Mr Tony Abbott and the Opposition Health spokesperson Ms Julia Gillard.

And well they might.

It is worth restating the facts:

It is a devastating illness wreaking havoc in the community, responsible for more than twice the number of deaths than the lethal mesothelioma which has received much publicity recently.

Obviously, the patients, their relatives and carers, need a lot of support - very specifically targeted support, often for a concentrated period when they are experiencing high levels of stress.

Seven groups in Australia

At my reckoning there are seven formal or traditional adult brain tumour support groups in Australia. That is not a large number, when you consider there are at least 700 cancer support groups of one kind or another in this country, including 217 in NSW alone.

These are some of the things we associate with a brain tumour support group: they meet at a physical location, arrange talks and presentations, distribute information to their members, and provide an environment for facilitated sharing and discussion.

Poster for Liverpool Hospital Brain

Tumour Support Group meeting.

Collection of verse, writings, and drawings

published by the Irish Brain Tumour Support Group.

There are two brain tumour support groups in Queensland, one in Brisbane and one in Townsville, and both are facilitated by staff of the Queensland Cancer Fund.

There is a group at Newcastle facilitated by Ms Laraine Cross, hospital oncology social worker at the Mater and also secretary/treasurer of Brain Tumour Australia, a group at Liverpool hospital facilitated by social workers and a neuroscience nurse, a combined group at the Sydney Neuro Oncology Group which services both RNSH and North Shore Private, a group at RPA in Sydney and a group at the Alfred in Melbourne. On a recent visit to Prince of Wales in Sydney I also heard of plans for a group there. The group at Monash is in abeyance. The Children's Brain Tumour Association (CBTA) and the Parent Connect service run by the Cancer Council Victoria provide invaluable help to parents.

That leaves many major treatment centres without a brain tumour specific support group.

I realise that there are general cancer support groups willing to accept anyone. There are also groups for those with an acquired brain injury. Some of the ABI services can be of assistance for specific deficits experienced by the brain tumour patient but not in a general sense.

Queensland research project

The Queensland Cancer Fund has commenced a research project about the support needs of brain tumour patients and their carers and through interviews and focus groups conducted late last year they have identified the following preferences:

I will return later to this question of hope - a very difficult challenge in the brain tumour environment.

They are the physical brain tumour support groups but there are other less obvious and even virtual forms of group support.

Other forms of support

The NSW Cancer Council has been running a program whereby they link people who have a brain tumour by teleconference at a set day and time. The participants might be hundreds of miles apart but they exist in a virtual group.

Here is another, less obvious, support group of two people. We tend to overlook the major support function of family, relatives and friends.


This is Andrew Brown, formerly of Wodonga and Northern NSW, parachute jumping in tandem shortly before he died from his glioblastoma brain tumour. Note how his paralysed leg is taped securely to his good leg so that it wouldn't fly around.

It took quite a support group to help Andrew achieve his objective but that group has no name, no facilitator, and dissolved after it had achieved its immediate purpose.

Similarly, 10 year old Eleanor from Hobart who has a brain tumour has a very special support group today - she is being visited in her home by Princess Mary. Eleanor's mother is here today as an allied health worker listening carefully to what is being presented and discussed.

One cannot produce a photo of some other forms of support group because they exist in a virtual world of computer-mediated communication.

Internet-based groups

I am referring to Internet discussion groups, be they chat rooms, on-line groups, or e-mail Lists.

In the brain tumour world e-mail discussion lists are used extensively by those who know about them, which is a growing number of patients and carers.

The longest established discussion group is the US-based BRAINTMR List, with over 700 participants. Australia and the UK have thriving lists and I understand they flourish in Germany as well.

Now, some of you might suspect they are hotbeds of irrational discussion and anti-medical attitudes. I assure you that the ones I am familiar with, are not. I can give you several hints, however: If a patient starts talking about boswellia then you can be sure they have been in contact with some Germans somewhere, and if they ask to be placed on the Clomipramine trial then they have probably been in contact with someone in the UK.

For the partner or parent or carer of a glioblastoma patient the discussion lists perform a very important role, as does the web-diary of a patient's journey - and I have links to 48 such diaries on my private brain tumour website which has been visited by over 100,000 people since 2000.

These discussion lists and web diaries provide a supportive and kindly introduction of the most likely course of future events for a person with a glioblastoma. They can fill in the landscape which the specialist might only have sketched in broad outline. They enable people to follow the journey of others to the extent that they are comfortable with, at different stages, and even to learn about the dying process.

Your fellow members of this virtual group become your "companions on the journey", travelling with you and providing comfort and support as you undertake the roller-coaster ride.

I know, for I have been there.

Another form of support for the patient and carer comes from the provision of soundly-based information.

Brain Tumour Australia activities

Brain Tumour Australia was established in 2003 principally because of the absence of specific support, information provision and advocacy for brain tumour patients and carers.

We have conducted two national Workshops for patients, carers and allied health professionals. Our next Workshop will be held at the Royal Children's and Royal Melbourne Hospitals on the weekend 16-17 July. Please encourage your patients, carers and health professional staff to attend, if possible.

3rd National Brain Tumour Workshop, 16-17 July 2005,

at Royal Children's Hospital (Saturday) and Royal Melbourne Hospital (Sunday).

Through a sponsorship grant from Schering-Plough and the support of Mr Hubert Stuerzl BTA imported 500 copies of the book "100 Questions and Answers about Brain Tumors" from the USA.

240 complementary copies have been distributed to neurosurgeons, the staff on neuro wards, the directors of all public radiation oncology centres, oncology treatment units, and relevant allied health professionals throughout every State and Territory in Australia.

The book contains a bookplate encouraging patients or family to phone a national Freecall number - 1800 282 912 - to receive their own personal, free copy.

Since August last year we have distributed over 100 copies in response to calls on the Freecall number.

If your hospital or treatment centre does not have a display copy of this book please give your business card or postal address to me so that we can remedy this omission.

When copies run out it will be replaced by the latest edition of the US Primer of Brain Tumors of which we have imported 700 copies for free distribution in Australia.

The 100 Q&A book.

The bookplate inside each display copy.

A Primer of Brain Tumours.

Hope

I want to conclude with some thoughts about the subject of "hope".

Last November I attended a brain tumour conference at Wimbledon which was held in conjunction with the Royal Marsden Hospital. Seated next to me at a set of tables in the front entrance was an ex-Kiwi who had been treated for a brain tumour, Cameron Fulljames, who had moved to the UK to pursue his career as an airline pilot.

Cameron was selling copies of his book "On a wing and a prayer". I bought a copy and my son took this photo of me, Cameron and his beloved fiancee Sarah. They planned to marry in 2006.

 

Cameron Fulljames, author of "On a Wing and a Prayer".

I didn't read his book immediately but after I returned home I received an e-mail from the UK to say that Cameron had passed away and would be buried in Edinburgh on Christmas eve, so I read his book in one sitting on Christmas Day.

Cameron wrote that on 30 August 2000, just six weeks after his first seizures, he had an important meeting with a Professor from the Department of Clinical Neuroscience. "My parents were desperate to hear something positive and they weren't disappointed," Cameron wrote.

The Professor told Cameron and his parents that surgery could be performed and later there will be radiation therapy.

Cameron wrote: "I wanted a prognosis and asked the question, How long did I have to live? The professor shrugged it off quickly and replied, 'Ask me again when you're seventy, Cameron.' 'You mean he will live to an old age?' my mother asked excitedly. 'Of course madam. There is not a disease, illness or cancer on this planet that somebody hasn't made a full recovery from, and that includes full-blown AIDS'. The mood in the room had changed completely. The positivity was electric."

The Professor had certainly given everyone hope, an abundance of hope, but was it false hope?

Mr Henry Marsh

I prefer the approach of Mr Henry Marsh, a British consultant neurosurgeon who was featured in the documentary "Your life in their hands" shown on BBC television last year. It has not yet been scheduled in Australia for screening but if it is, I encourage you to watch it.

At one point in the documentary Mr Marsh has just delivered some bad news to a young couple, telling the husband that without an operation his life expectancy will be much reduced. The wife's eyes immediately dart in panic to her husband's face and Mr Marsh explains to them:

"My feeling is it's always best to be honest with people and then you know what you are up against".

Mr Henry Marsh.

I don't pretend to have the answers and all I can do is to pray that you people, in conveying bad news, can be inspired to say words that are appropriate to the person and the occasion and that nothing you say will ever prevent a patient and their loved one from having sufficient time to prepare for their death and their loss, if that is to be the likely outcome.

Thank you for the opportunity to make this presentation.

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