LAUNCH
OF BEYOND BLUE (BB) / BRAIN TUMOUR ALLIANCE AUSTRALIA (BTAA) FACT SHEET
ON BRAIN TUMOURS AND DEPRESSION AND ANXIETY DISORDERS AT PARLIAMENT
HOUSE CANBERRA, THURSDAY, 28 OCTOBER 2010
Speakers at
the launch: Left to
Right - Tracey Kristiansen, Matthew Pitt, Sarah Mamalai, Senator Bilyk,
Leonie Young, MaryAnne Rosier. Denis Strangman
|
An audience of about 40
brain tumour survivors, carers, former carers, mental health advocates,
Parliamentarians and staff, and Press Gallery journalists, attended a
function in Parliament House, Canberra, hosted by Tasmanian ALP Senator Catryna Bilyk,
where a new Fact Sheet on brain tumours and depression and anxiety
disorders was launched. (The Fact Sheet may be downloaded from here.)
Senator Bilyk, who is
convenor of the Parliamentary Brain Tumour Awareness Group, said that
as a survivor of brain tumours she is committed to raising awareness
about healthy living and wished to remind people that they should be
vigilant about seeking medical attention if they have concerns about
their health.
Representing the
Minister for Health and Ageing, the
Hon. Nicola Roxon MP, Senator Bilyk said
“Nationally brain tumours affect about 1,400 people diagnosed with
malignant brain tumours each year with another 1,400 diagnosed with
benign tumours. However, brain tumours can have a significant impact on
both the physical and mental health of sufferers." A copy of Senator
Bilyk's media release can be accessed here.
The six-page Fact Sheet
was jointly prepared by Brain Tumour Alliance Australia (BTAA) and the
anti-depression organisation beyondblue,
whose CEO Ms
Leonie Young, travelled to Canberra for the launch. Ms
Young said "Being aware of the early signs of depression and anxiety
means those who may be affected can get the right treatment. We know
that brain tumours increase the risk of depression and anxiety, but
people who are well informed about their illness are more able to make
decisions and get help early."
Several experts in the
area contributed to the development of the text of the Fact Sheet,
which is intended for distribution to patients, their carers and
families, and their treating Doctors. One of those contributors was Associate
Professor Jane Turner
from Brisbane who wrote prior to the launch:
"Coping
with a brain tumour
is challenging enough but when depression or anxiety are superimposed
the
situation can seem overwhelming. Unfortunately many people with brain
tumours and their family members struggle
with this double whammy because of the tendency to overlook depression
and
anxiety as disorders which require treatment, instead believing that
feeling
upset or down is normal. Whilst some distress is almost inevitable,
distress that undermines the ability
to be with and share in relationships and family life is not normal and
deserves treatment."
Sydney
Radiation Oncologist Dr
Eng Siew-Koh also contributed to the drafting process,
together
with Dr Ally Rooney
of Edinburgh, Scotland. Dr Rooney and his Department Head Dr
Robin Grant had undertaken a Cochrane review of the evidence base for
the diagnosis of depression in a brain tumour patient and had
discovered
very little in the way of recommended treatments. Dr Rooney has spoken
on the subject or presented papers about brain tumours and quality of
life problems at conferences in Japan, the Netherlands and the UK.
Mr Matt Pitt, Chair
of BTAA and a brain tumour survivor, thanked the Senator for her
involvement and also thanked beyondblue
for its collaboration with BTAA in the project. Earlier that
morning Matt participated in an interview with Radio National's Fran
Kelly which can be
accessed here.
ACT
resident Mary Anne Rosier, who is
involved with several community groups, and who
lost her brother and her sister to brain tumours, spoke of her initial
literature review of research papers on the topic, and her surprise at
the
strong association between brain tumours and depression and anxiety
disorders,
of which incidences range between 25-38% of patients in the most
authoritative
papers. Mary Anne spoke of the challenges in separating the symptoms of
a brain
tumour from those of anxiety and depression, and the methodological and
detection problems that this causes patients, clinicians, and
researchers
alike.
Young mother and 3-year survivor Sarah
Mamalai told the assembled guests
of her battles with the illness and its treatment, the enormous toll of
both
these factors on her mental health, and the difficulty in broaching the
topic.
Sarah also took the opportunity to remind those assembled on the need
for
funding specialist brain tumour nurses to assist patients meet the
complex
requirements of their care. A copy of Sarah's speaking notes are
available here.
Later, she was interviewed on video by Press Gallery journalist Peter
Veness who has stated publicly that he has a brain tumour.
That interview can be
watched here.
Caregiver Tracey Krstiansen spoke of the
difficulties of caring for her
young husband living with a brain tumour, and urged the audience to
attend the
Train for
the Brain Fun Run/Walk at Canberra's Lake Burley Griffin on
Saturday 6
November, an event initiated, planned, and overseen by Tracey. The
audience were
stunned and delighted to hear that the event is expected to raise tens
of
thousands of dollars for the brain tumour research foundation, Cure For
Life.
That Tracey organised such a large event while caring for her husband
and
working Full Time is remarkable. The audience was also told that the
annual Ben
Donohoe Run and Walk for Fun would
follow on Sunday 7 November at
Canberras John Knight Memorial Park. The event is in its sixth year,
and is
held in memory of Ben, who passed away from a brain tumour at the age
of nine.
The event has raised $150,000 to date for charities supporting cancer
patients
and their families, with proceeds this year going to the ACT Eden
Monaro Cancer
Support Group and Make-A-Wish Australia.
Denis Strangman,
Chair of the
International Brain Tumour Alliance, told the meeting that
this was the most important brain tumour-related event to have occurred
in Federal Parliament since 31 May 2004 when Government and Opposition
Members combined to co-sponsor a bi-partisan resolution in the House of
Representatives
drawing attention to the needs of brain tumour patients.
Part of the
audience at the launch function. Left to right, front row:
Mr John and
Mrs Jan Tucker (ACT Mental Health Carers' Network);
Robin Poke, who
assisted BTAA with media work for the launch;
Ms Leonie Young
(beyondblue); Sarah and
Oscar Mamalai.
Quite
a few MPs and Senators wore grey ribbons in their respective Chambers
on the day of the launch to signify their solidarity with the brain
tumour cause in the lead-up to the launch of the International Brain
Tumour Awareness Week on Sunday 31 October. A number of
Parliamentarians also attended the launch
function, including: Senator
Claire Moore,
Senator Dana Wortley, Mr Geoff Lyons MP, Mr Andrew Robb MP, Mr Andrew
Leigh MP,
Mr Tony Zappia MP, and Senator Steve Hutchins.
Staff were also present from the office of Senator Carol
Brown
and the office of Senator
Fiveranti-Wells.
Other MPs who had hoped to attend included: Mr Craig Thompson MP, Dr
Chris Back MP, Senator Sue Boyce, Michael McCormack MP, Gail Brodtmann
MP, and Jill Hall MP.
Apologies from among the
ACT and interstate brain tumour and cancer communities included: Dr
Charlie Teo, Dr Liz Hovey, Ms Val Lee (Bosom Buddies), Mr Russell
McGowan (HCCA), Ms Susan Murphy (MSD), Dr Yvonne Luxford (Palliative
Care Australia), The Anthoney Family, Sue Paice and Doug Riding.
A copy of the Fact Sheet
has been sent by BTAA to 65 key specialists and centres in Australia
where brain
tumour patients are treated and the Fact Sheet
will accompany free copies of the "Brain Tumor
Primer" sent to patients and family members who contact the BTAA
FREECALL number 1800 857 221 seeking information and support. Copies
are also available through beyondblue at 1300 22 4636
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Senator
Bilyk listens to Matt Pitt speak. |
Left to right:
Oscar Mamalai, Senator Bilyk, Sarah Mamalai,
Leonie Young,
Brooke
Eastley (Staff member in Senator Bilyk's office)
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Australian
tennis legend John Alexander, now an MP, wears his grey ribbon in the
House of Representatives, as does a colleague seated behind him.
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A
senator wears the BTAA grey ribbon in the Senate during Question Time.
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