In 2011 Dr Sathya Rao, Clinical Director of Spectrum Personality Service Victoria, gave an inspiring speech to the Victorian Mental Health Carers Network*. He spoke of the ignorance, stigma and discrimination surrounding borderline personality disorder (BPD) and surprised many of us by describing the way in which mental health professionals have created and promoted this negative culture.
Sadly, many staff within mental health services believe that a diagnosis of BPD means that there is no hope and no future due to their outdated belief that BPD is not treatable. The consequences of this negativity and paucity of adequate resources and trained staff are that people with BPD are characteristically turned away from mental health facilities and seek help from the private sector, if they can afford it, or struggle on trying to find a way to survive despite the ravages of this illness.
Too frequently this struggle is punctuated by self harm and/or suicide attempts. Tragically, as in the recent demise of Lucy Henry, attempted suicide has ended lives of great promise.
It is estimated that between 2 – 5% of the Australian population experience BPD and the rate of self harm and suicide attempts in this population is very high. This is to be expected given the difficulty of accessing appropriate treatment and the extreme distress caused by the illness together with the stigma surrounding it.
This is the past which sadly is still occupying space in the present.
In response to Dr Rao’s heartfelt portrayal of the stigma and discrimination surrounding BPD and the distress being experienced by so many individuals and their families, the VMHCN took up the challenge presented by Dr Rao and formed a working group to take action. With the support of Spectrum the Personality Service for Victoria, VMIAC (Victorian Mental Illness Awareness Council), Our Consumer Place, the Private Mental Health Consumer Carer Network (Australia), ARAFEMI^, the Bouverie Centre, Mental Illness Fellowship and several consumers and carers.
Concurrently a number of advocates had approached the Senate asking it to declare the 5th October each year as a National BPD Awareness Day. This was later expanded to a week ie the first week of October.
As a result the first National BPD conference was held on 5th October 2011 and a decision was made to form an organisation that could advocate for everyone impacted by BPD and to create an open dialogue between consumers, carers, clinicians, researchers where each could listen to and learn from each other
The conference was made possible by a grant from the Mental Health Council of Australia and was very quickly booked out with over 500 people attending. There was great interest from mental health professionals who particularly wanted to hear the perspectives of consumers and carers. The conference provided a great cross section of consumer and carer experience and excellent evidence based information about appropriate treatments and supports. Participants gained a real understanding of the distress caused by this illness, the needs of those experiencing it and the impact on families and friends and their needs for information and support as well as learning of appropriate and successful treatment and support.
Following the success of this conference, the 2nd National BPD conference was held in Adelaide in October 2012 and the 3rd National BPD conference was held in Sydney in October of this year. The Melbourne based BPD working group has played an important role in instigating and supporting these conferences to acknowledge and mark National BPD Awareness Day.
The Australian BPD Foundation was launched at the Sydney BPD Conference on 5th October 2013 by Prof Allan Fels, A.O. Chair of National Mental Health Commission followed by a rousing address from our Patron Janne McMahon OAM.
The Foundation is committed to getting the past out of the present by dispelling the myths and negative culture that has developed around BPD. The Foundation aims to create a more realistic culture of hope and optimism based on the reality that with access to appropriate treatment and support, the prognosis is positive! People can and do recover and lead meaningful and creative lives.
However it is a journey that requires access to appropriate treatment, support and understanding from family, friends, mental health professionals and the community.
The VMHCN has continued its support to the Australian BPD Foundation by providing office space for the foundation whilst it is in its formative stage. This enables Rita Brown, our hard working volunteer administrative assistant, to have a desk, computer and use of a telephone when needed. We thank the VMHCN for their generous support to the Foundation.
The interim board which was established during 2012 comprised of Julien McDonald Chair, Dr Sathya Rao Deputy Chair, Estelle Malseed Secretary, Keith Warren Treasurer, Catherine Bennett and Rita Brown, Board members. This constitutes a mix of consumers, carers and clinicians which is integral to the orientation of the foundation. The Board was delighted that Janne McMahon OAM accepted our invitation to be the inaugural patron of the Australian BPD Foundation.
The initial tasks of the foundation have been to develop a constitution, seek registration as a public company and obtain Charitable and Deductible Gift Recipient Status. The Board is extremely grateful to Keith Warren as Treasurer, Price Gibson Pty Ltd and Laura Loftus of DLA Piper for their pro bono assistance and guidance through these processes. I am delighted to advise that we have succeeded with all 3 aims.
So we are now in a position to actively promote membership of the foundation with tax deductible status and develop it as a truly national organization based on genuine partnership between consumers, carers and clinicians, acknowledging the diverse contributions of all parties to the partnership.
In October 2013, the Australian BPD Foundation was officially launched at the third BPD Conference by Prof Allan Fels, AO Chair of National Mental Health Commission followed by a rousing address from our Patron Janne McMahon OAM.
Since then we have tirelessly advocated for people with BPD (and their family, friends, kin) to be able to access appropriate treatment and support when needed and close to where they live.
We have also rolled our four Stage National Training Strategy to upskill and engage clinicians working alongside people with BPD and their families to improve mental health practitioners and service providers capacity to recognise, respond to and treat people with BPD, and provide better support to their families and carers. This Strategy was extremely effective in changing clinicians willingness and capacity to engage.
*Victorian Mental Health Carers Network is now known as Tandem www.tandemcarers.org.au
#ARAFEMI merged with Mind Australia www.mindaustralia.org.au/