_De Backman-Hoyle: Speech to National Mental Health Commission Jan 24, 2012
__ It is with great pride, honour
and solemn responsibility that I am given this opportunity and privilege to
speak to you today.
I would like to begin by asking that we acknowledge those that are not here to speak for themselves about the impact their mental health has had on them, because for them their alternative from their mental illness was to choose to stop living. This represents thousands of Australian lives each year, and leaves a legacy of unimaginable grief, loss and suffering for thousands more fellow Australians each and every day.
My lived experience as a carer spans almost 30 years; my lived experience has been within two very significant relationships, one as a wife and now as a mother.
My husband died too soon, too young, he was only 33, for him death was his option to the pain that no one could seem to grasp, the mental health system in the 80’s and early 90’s could be described as quite primitive compared to some aspects of mental health reform that taken place since, but sadly also so similar to some of the same challenges being faced by many today as well.
The gift Andrew left me with is a beautiful daughter, who was a precious little girl of 4 ½ when she lost her father, explaining to a child that death is an option to life with them in it, is one of the cruellest responsibilities I have ever had to endure.My beautiful daughter shares many of the traits and attributes of her father, a dynamic personality, a desire to connect with others, and their adventurous spirits.
She has also inherited her fathers illness, in his time it was labelled manic depressive disorder, several years ago she was diagnosed with the fresher label of bipolar disorder – some could say regardless of the term you give the illness it doesn’t describe the very personal lived experience because that is so uniquely different for each individual that is given any diagnostic term.
Both of these loved ones have spent time in the hospital system, we as a family have an intimate understanding of the public and private mental health system, for me personally this has the benefit of hindsight over many years, one thing is for sure, from my perspective and many others there is still a massive opportunity to improve both.
My experience of the system (a single example)
I was asked to provide a single example of an experience; a wise move as I may have been here until tomorrow taking you through our personal history and stories.
My daughter whose name I will choose to not share with you because respect for her privacy is important to us, spent some time in a private psychiatric hospital both in acute care as well as on a more general ward. Her first admission was at the age of 18, to say she was vulnerable would be a complete understatement, as so many youth admitted into mixed adult wards could testify.
One day on my way to the hospital I received a call from my daughters psychiatrist, who very tentatively told me that something of great significance had taken place and he needed to discuss this with me. I met with him immediately and he made a decision that must have been hard for him professionally because technically he could have been breaching confidentiality by sharing private information but legally as my daughters recognised carer he decided he would inform me because my daughter was in extreme peril at the hands of a hospital staff member.
Please put yourself in this situation, you have entrusted your 18 year old child to a adult hospital system where there is a perverse individual on staff that has the opportunity and motive to remove your child from the hospital and take them to their private home were your child is sexually assaulted by this individual and taken back to the hospital as though no one will ever know. I thank god that she had developed rapport and a healthy relationship with her psychiatrist that she felt safe to share this with him.
This was 2008 not the dim dark ages; it is obscene to think that some of our most vulnerable people are still at risk in modern psychiatric hospital systems. Yes, this man was removed from the system, yes there was an apology from senior management at the hospital as to the lack of security systems that allowed these events to take place, yes my daughter knew that this was unacceptable and nothing she did or said made her in any way responsible but all of that is irrelevant, these incidents should not have been allowed to happen in the first place.
My daughter was offered the opportunity to press legal charges against this perpetrator; she didn’t because simply there are only so many traumas you can endure.
People with mental illness live with the very real risk of constant re traumatisation by just being in the mental health system. This is why there is so much faith in advance for those of you charged with your authority at this commission, we have needed you for so long and many of us pray that you will be the representatives of the eyes and ears of those of us without formal responsibility or authority.
What I’d like to see for the future of mental health reform
My dream for the future of mental health reform could be described by some as lofty aspiration, for me and many other carers I represent we would describe it as pure necessity.
An integrated system:
Not a big list, but a very worthy list
How this will help change my experience
Many carers are also consumers which is quite easy to understand; there is the social impact of caring, the financial impact of caring, the need to fight for your rights and the rights of the person you love whilst caring, the impact of physical exhaustion and mental fatigue, this tests the strongest of people and speaking for myself I totally acknowledge the fact that I know I am a mere mortal.
For the carers that I am privileged to represent we say thank you to you in advance, and we look forward to your leadership and drive to provide us with the certainty that someone is measuring true reform and accountability.
I want to finish by saying that my lived experience as a carer has had its positive experiences also, I have meet some truly amazing families and friends of those suffering with mental health challenges, these people like me are sometimes confused by the term carer, to these people they are mum, dad, brother, sister, lover plus an array of differing types of friends. For us caring is not an optional choice it is our choice because of our love and at times responsibility of those who are not well.
I have learnt to value and appreciate life, it has taught me that living through pain provides proof of tenacity and strength, that to laugh is ok, that to cry is ok, that to be angry is ok, and to experience joy is also ok and to love again is more than ok.
Our family is now a different dynamic, but still full of love and the usual garden-variety family issues but we have hope, optimism and a sense of future, something that could be described as a basic human right for us all.
Thank –you
De Backman-Hoyle – Carer Representative Roles
Blue Voices Representative, National Mental Health Consumer and Carer Forum
Co chair, Victorian Mental Health Carer Network
Member National Suicide Prevention Working Group
Carer Representative 4th National Mental Health Plan Cross Sectoral Working Group
Mental Health Council Australia – Pharma Collaboration expert reference group as a Blue Voices Carer Representative
Beyond Blue – Ambassador Speaker and Blue Voices Carer Representative
Mental Health First Aid Instructor
A member of ARAFMI VIC & MIF VIC
I would like to begin by asking that we acknowledge those that are not here to speak for themselves about the impact their mental health has had on them, because for them their alternative from their mental illness was to choose to stop living. This represents thousands of Australian lives each year, and leaves a legacy of unimaginable grief, loss and suffering for thousands more fellow Australians each and every day.
My lived experience as a carer spans almost 30 years; my lived experience has been within two very significant relationships, one as a wife and now as a mother.
My husband died too soon, too young, he was only 33, for him death was his option to the pain that no one could seem to grasp, the mental health system in the 80’s and early 90’s could be described as quite primitive compared to some aspects of mental health reform that taken place since, but sadly also so similar to some of the same challenges being faced by many today as well.
The gift Andrew left me with is a beautiful daughter, who was a precious little girl of 4 ½ when she lost her father, explaining to a child that death is an option to life with them in it, is one of the cruellest responsibilities I have ever had to endure.My beautiful daughter shares many of the traits and attributes of her father, a dynamic personality, a desire to connect with others, and their adventurous spirits.
She has also inherited her fathers illness, in his time it was labelled manic depressive disorder, several years ago she was diagnosed with the fresher label of bipolar disorder – some could say regardless of the term you give the illness it doesn’t describe the very personal lived experience because that is so uniquely different for each individual that is given any diagnostic term.
Both of these loved ones have spent time in the hospital system, we as a family have an intimate understanding of the public and private mental health system, for me personally this has the benefit of hindsight over many years, one thing is for sure, from my perspective and many others there is still a massive opportunity to improve both.
My experience of the system (a single example)
I was asked to provide a single example of an experience; a wise move as I may have been here until tomorrow taking you through our personal history and stories.
My daughter whose name I will choose to not share with you because respect for her privacy is important to us, spent some time in a private psychiatric hospital both in acute care as well as on a more general ward. Her first admission was at the age of 18, to say she was vulnerable would be a complete understatement, as so many youth admitted into mixed adult wards could testify.
One day on my way to the hospital I received a call from my daughters psychiatrist, who very tentatively told me that something of great significance had taken place and he needed to discuss this with me. I met with him immediately and he made a decision that must have been hard for him professionally because technically he could have been breaching confidentiality by sharing private information but legally as my daughters recognised carer he decided he would inform me because my daughter was in extreme peril at the hands of a hospital staff member.
Please put yourself in this situation, you have entrusted your 18 year old child to a adult hospital system where there is a perverse individual on staff that has the opportunity and motive to remove your child from the hospital and take them to their private home were your child is sexually assaulted by this individual and taken back to the hospital as though no one will ever know. I thank god that she had developed rapport and a healthy relationship with her psychiatrist that she felt safe to share this with him.
This was 2008 not the dim dark ages; it is obscene to think that some of our most vulnerable people are still at risk in modern psychiatric hospital systems. Yes, this man was removed from the system, yes there was an apology from senior management at the hospital as to the lack of security systems that allowed these events to take place, yes my daughter knew that this was unacceptable and nothing she did or said made her in any way responsible but all of that is irrelevant, these incidents should not have been allowed to happen in the first place.
My daughter was offered the opportunity to press legal charges against this perpetrator; she didn’t because simply there are only so many traumas you can endure.
People with mental illness live with the very real risk of constant re traumatisation by just being in the mental health system. This is why there is so much faith in advance for those of you charged with your authority at this commission, we have needed you for so long and many of us pray that you will be the representatives of the eyes and ears of those of us without formal responsibility or authority.
What I’d like to see for the future of mental health reform
My dream for the future of mental health reform could be described by some as lofty aspiration, for me and many other carers I represent we would describe it as pure necessity.
An integrated system:
- One that starts at the community grass roots level, the GP that knows and understands about mental health and respects mental health illness with the same legitimacy as physical illness, and is financially compensated in an equitable way.
- The GP’s that have created strong ties with mental health specialists and have created a feedback loop were both professionals are informed and are across patient care and progress and that this is just a daily normalised practice of ongoing collaborative care.
- That carers are involved in the co design of best practice support by mental health specialists. That new carers are supported by other carers perhaps a little further down the path of their caring experience who have learnt to navigate the mental health system, that there is funding for support groups for carers that can offer ongoing sustainable services. That programs are developed and available to support carers to learn how to care for themselves from the inside out, rather than the outside in. That carers are recognised as a very diverse group, with special attention paid to CALD and other marginalised carer groups.
- That education continues to remove the fear and stigma of mental health issues in the community, within schools and workplaces.
- That the psychiatric service systems including hospitals never forget that each patient belongs to communities, that there is no faceless de-identified people, each and every person has their own unique story to tell and are valuable members of society.
- That funding gets to those that need it and they have a choice as ‘consumers’ to choose services that understand and can support their uniqueness and needs.
- And
finally that the lived experience of both the consumer and carer is recognised
and respected as legitimate information and valuable data that can inform and
educate. That the lived experience is
used as a form of real measurement of reform and change experienced within the
system, that respect for carers and consumers lived experiences are genuine and
not experienced as tokenistic.
Not a big list, but a very worthy list
How this will help change my experience
Many carers are also consumers which is quite easy to understand; there is the social impact of caring, the financial impact of caring, the need to fight for your rights and the rights of the person you love whilst caring, the impact of physical exhaustion and mental fatigue, this tests the strongest of people and speaking for myself I totally acknowledge the fact that I know I am a mere mortal.
For the carers that I am privileged to represent we say thank you to you in advance, and we look forward to your leadership and drive to provide us with the certainty that someone is measuring true reform and accountability.
I want to finish by saying that my lived experience as a carer has had its positive experiences also, I have meet some truly amazing families and friends of those suffering with mental health challenges, these people like me are sometimes confused by the term carer, to these people they are mum, dad, brother, sister, lover plus an array of differing types of friends. For us caring is not an optional choice it is our choice because of our love and at times responsibility of those who are not well.
I have learnt to value and appreciate life, it has taught me that living through pain provides proof of tenacity and strength, that to laugh is ok, that to cry is ok, that to be angry is ok, and to experience joy is also ok and to love again is more than ok.
Our family is now a different dynamic, but still full of love and the usual garden-variety family issues but we have hope, optimism and a sense of future, something that could be described as a basic human right for us all.
Thank –you
De Backman-Hoyle – Carer Representative Roles
Blue Voices Representative, National Mental Health Consumer and Carer Forum
Co chair, Victorian Mental Health Carer Network
Member National Suicide Prevention Working Group
Carer Representative 4th National Mental Health Plan Cross Sectoral Working Group
Mental Health Council Australia – Pharma Collaboration expert reference group as a Blue Voices Carer Representative
Beyond Blue – Ambassador Speaker and Blue Voices Carer Representative
Mental Health First Aid Instructor
A member of ARAFMI VIC & MIF VIC
