A Path to Follow

Author name: Kirstie Edwards

Brain takes a break. Body keeps score.

The journey behind Mental Health Challenges: Brain takes a break, but the body always keeps score. I feel it would be highly hypocritical of me, given this is a Lived Experience Service, to only share my tools and strategies of past wounds from which I have healed. I feel it would also be highly hypocritical of me given my assertive community voice in decreasing mental health stigma and helping people to heal through sharing their very real and common experiences, to now hide behind mine.  The real story behind mental health challenges is not always pretty, is often raw and yes, it can be frightening. What it is often not (despite media representation), is violent or threatening, contagious or life changing for a bystander. What it is, is a strikingly common, lonely existence often hidden behind the closed doors of those you know. Not for me, not for my family and not for my community; not anymore. Mental Health Challenges: Then I remember parts of my first experience of *dissociation; some memories, but mostly feelings. Ben, a toddler, and Kyle, a few months old. I remember my sister-in-law dropping me flowers. I remember looking at my feet as breast milk splashed on the flower. I remember smiling and saying goodbye. I remember being on the bed, phone to ear trying to answer Anthony’s questions. Where are the boys?  I don’t know. Did you put them to sleep?  I don’t know. Tiredness. So tired, too tired, too scared to check on the boys. I could not have done something, could I? I could not check. I needed to sleep. The quiet, warm fog weirdly comforting. Of course, they were ok and of course I did not hurt them. I had put them down for naps and there they remained, I think, until Anthony got home. That dissociation, like this time, only lasted a short time. The subsequent fog, the disconnection from life and fatigue lasted well over six months. This was my first introduction to serious mental health challenges. Mental Health Challenges: Now… In the blink of an eye, all sense of time, place and self, gone… I may have even gone to IGA in my dressing gown. Yep, my very own customised dissociation. Some part of me knew I needed help. But *Self and the spoken word had suddenly evaded me; they were simply buried so deep I had no immediate access. There were no words for my boys; that it was happening again. No, not again. I text my mate, he respected my request to not call. I texted my Psychologist. She called. “Right. Back against something hard. Feet planted. Got it?” Unusually assertive, she went on, “who am I talking to?” I didn’t know, I only knew for certain it wasn’t Self.  I can’t clearly remember the rest of the conversation, common with a period of dissociation, but she reached Self enough to convince her/me that hospital was not the answer. Most parts of me, from my lived and professional experiences, actually already knew that. But there was a part of me that just wanted to sleep, didn’t want to talk, didn’t want to think and really didn’t care. An appointment was made for the next day and I went to bed. No one noticed Self wasn’t with me; I’ve gotten good at that. Holding onto Self I awoke the next morning like someone had siphoned every sniff of petrol from my tank. My mind was a fog, my body leaden and my voice unable to verbalise. Self was back, but she was totally and utterly exhausted. Son to school? Couldn’t drive. Shower? Couldn’t move. Eat? Desperately hungry but didn’t want food. Strangely I was not overly panicked by the experience, as I had previously envisaged I would be when I thought about it happening again. Apparently, my body had kept score. Like having a baby, my body had recorded that it had been here before. Like last time, my body had decided to put a stop to what my heart and mind could not; emotional and physical over-commitment. It became clear pretty quickly that I needed to re-prioritise my commitments and that doing it now, while my body (not my heart and mind) was in control, was the only way to do it. Fortunately, any negotiations with my heart and mind would be rendered useless by my body’s utter lack of functioning: movement (slow and limited), voice (by written word only), mind (one thought at a time, on only one subject at a time).  In a somewhat detached fashion I communicated my reduced capacities to my two volunteer organisations (knowing that once my heart and mind revived, I would grieve this and a part of me would take over and keep me doing what had brought me to this current state). My first experience of dissociation evoked a consistent experience of feeling present but not here. Of watching our two little (now big) boys and their dad living life. I was watching on, trapped within my silent and invisible bubble, disallowing me from entering their world. This time is eerily similar, but nowhere near as extreme. I am currently only becoming distressed when a part of me feels frustrated, sad or angry at my total lack of energy to engage. I am still in their world and I can still feel (but not yet reach) that passion and determination to continue toward their world. Moving Forward While my external voice and movement is slow, to the point where getting up and down is physically exhaustive, my internal voice and brain appear to be functioning as per normal. I think… Yep, there is the old doubt that creeps in and out still, as there is the sudden and crippling bouts of social anxiety when thinking about seeing anyone outside of my family, but those moments will pass. I know that now. My body has been keeping score and even though my tools are not yet working, I

All about Perspective

Lived Experience in Mental Health

Professional/Lived Experience. Who decides? Who sets the arbitrary line to determine if or when I share my lived experience with my clients? Who decides if I use my lived experience in a way that is safe, for the benefit of our community and in line with best practice? Great question. The answer?  You. And you know what? A person’s rapport with a service greatly influences the effectiveness of it.  Of course it should always be you. APTF provides a customised balance of professional and lived experience in mental health to support clients walking their mental well-being journeys. We recognise the need for consumers to feel supported by a team who can connect and journey beside you; personally and professionally. My Experiences. Don’t box me in. There is a growing body of evidence and overwhelming community and professional support for incorporating lived experience in our professional mental health services. That is how we already practice at APTF. I am more than one experience and one perspective. Don’t box me in. I am a Consumer. I am Carer and I am Professional. During physical isolation I participated in Tandem and Victorian Mental Illness Awareness Council (VMIAC)’s Royal Commission into Mental Health feedback sessions. Tandem represents carers of those living with mental health challenges. VMIAC represents consumers of mental health services.  I was also invited to bring “my perspective” to an Insta Live this week with the Discovery College. As a result of my participation and my Discovery Convo gig I got thinking more about my lived and professional experiences. How they serve my life long passion of supporting others in their mental well-being journeys. Consumer. Carer. Professional.  Three aspects of my life not looking to alter in the short term. Three aspects of my life I am proud to identify with. Three aspects of my life I know assists other people in their journeys as consumers, carers and professionals. Professional Limits A set of often arbitrary and ambiguous codes, discouraging the sharing of lived experience, were pervasive in my time working within the family and health services field. With time, I shared a limited version of my lived experience. The professional scene demanded a somewhat sanitised version, however. A stark difference to how these experiences played out in actuality. I felt disappointed and alarmed at not being able to share experiences that could help those who shared their vulnerabilities with me. Thanks to VMIAC, Tandem, Discovery College, other like organisations and passionate individuals, we are now looking at a new world. A new future where lived experience may take its rightful place in the mental health service system. A Path To Follow is already here; in the future. Our entire service is based on a customised balance of professional and lived experience in life’s challenges. We recognise there is a need and a place for all experiences to best support our community in their mental well-being journeys. The Right Balance But surely not everyone with lived experience is a good fit to provide such support I hear you ask? I agree and disagree. Fence sitter, I hear you say.  Yep, I agree with that. With appropriate desire, training, guidance and ongoing support, those with lived experience can support others in their journeys. Without those criteria fulfilled however, there are risks abound, for all parties. That is why at APTF, we provide the right balance of experience and customise a service that best suits the needs of our clients. Our Youth Mentors are not professionals, but they sure as heck have lived experience. They certainly tick off on the passion and desire. They are trained, guided and supported at all times, from both my professional and lived experiences. I understand risk. I am fully trained and experienced in assessing, working with and intervening in it. We practise with the best interests of clients at front of mind. We use a “do no harm” approach and constantly assess and monitor risk. Where our lived experience can be shared within the do no harm approach and in the best interests of our clients, then we will share. The Future I hope we are about to enter a new world where ALL professionals in the field are able share their multi faceted experiences. Where our clinicians can take the lead of Georgie Harman, Beyond Blue CEO, who speaks with honesty of her lived experience with alcohol and depression. Hearing the perspectives of fellow consumers and carers in recent times has only consolidated our approach at APTF as the right one for us. The feedback paints a service system where consumers and carers often feel disconnected from the clinicians caring for them. Very much a scene of “them” and “us”. We need to develop a “we” team.  All members on the same page, managing the same challenges, for a common purpose. A person’s recovery needs to take place with their chosen professionals, inclusive of that person’s family and community supports. A service that pays respect to and mindfully utilises lived and professional experience can attain all of that and more. I am very excited about that! I am also very excited we are already working within a model, providing services that our community is very loudly saying is needed. Professional and Lived experience; walking beside you. If you want more information about our services or are in a position to financially support our service, please contact Kirstie.

Let’s just blame Social Media, shall we?

This is a question that has puzzled so many over the past decade and lead to some very heated debates. A recent study has brought to light some statistics that can help us answer this question a little better. The study shows that in fact social media can have a negative effect on mental health, however if you dive a little beneath the numbers you will find that the way that social media is used and how often it is used is actually what we need to think about when looking at the correlation between social media and mental health. Things such as cyber bullying, lack of sleep and reduced physical activity are the harmful factors that come from the misuse and overuse of social media that can lead to mental health complications. However despite this I can say that social media is a great tool for connectivity and an amazing innovation if used safely. My hot tip is to not quit social media but rather simply not allow it to get in the way of important things in your life such as sleep, exercise and the things that make you happy. Social media should not be a dominating factor in your life. By all means use it to catch up with friends and share what you’re doing with your life; just don’t let showing everyone how cool what you’re doing ruin just how cool it actually is. To read more on this topic see here and here: Kyle (our newest volunteer)

Youth Mental Wellbeing Services

The following services are designed to assist young people while they are experiencing mild to moderate symptoms of mental health challenges. Connect Health & Community Ph: 9575 5333 Based in Bentleigh East and Cheltenham.  Services: Paediatric psychology, youth social work & Integrated Family Support. Top Tip: The Youth Social Work team are quite unique in this geographical area; offering a flexible settings for meeting young people, adept at shared care with other providers, experienced in monitoring all types of risk and provide great pathways for liaison with family members. Their work combines practical supports and therapeutic counselling, dependent on the young person’s needs. A Path To Follow recommended Bayside City Council Youth Services Ph: 9599 4622 Based in Sandringham, Highett & other co-located spaces within Bayside. Services: Counselling & individual support provided for ages 10 to 25yrs and their families who live, work, study or have significant ties in the Bayside City Council. Headspace Bentleigh office: 9076 9400    Elsternwick office: 9076 7500 Offices are based in Moorabbin and Elsternwick. Services: A free or low cost service where young people aged 12-25 can access qualified mental health and well being professionals, including GPs, psychologists, drug and alcohol counsellors, and You can self-refer if you like, but a mental health care plan is required to see one of our mental health professionals. We also have other workers and programs you can access without a mental health care plan employment service providers. Their online resources are also worth checking out and offer a good online or telephone services for those particularly need support outside business hours. https://www.eheadspace.org.au/ Top Tip: There are more services at Headspace then can be garnered well from their website. Although they are limited by the same funding criteria as other government funded services, it worth checking out their groups and services that sit outside those that require a mental health care plan. Kingston Youth Services Ph: 1300 369 436 Services: Youth Work, group programs, Psychology & Counselling. Top Tip: Offer a broad range of one to one and group services for young people. This includes practical supports, one to one counselling and a range of group activities. After an initial assessment, the most appropriate service is offered to the young person. Blokes Psychology Ph: 03 9994 1721 Based in Highett & Scoresby Services: One to one psychological therapy for boys and men. Mental Health Care Plan required. Top Tip: This service was designed by a young male Psychologist who saw the major gap in services customised for males and the low uptake rate of males engaging mental well-being services. It is a designed, developed and implemented service with men and for men (of all ages) A Path To Follow recommended. Melbourne Health Rooms Ph: 9029 4197 Based in Bentleigh Services: One to one psychological therapy for people of all ages, including adolescents. Mental Health Care Plan required. Top Tip: This service has been tried and tested by the Founder of A Path To Follow & other people she has recommended to the service. The specific practitioners seen include Donna Swedosh and Remy Lidner, but the other psychologists there do come recommended also. A Path To Follow recommended. A Path To Follow Mentor Program Ph: 0478 310 145 Based in South Eastern Melbourne Services: One to one peer mentoring partnerships for young people.

How A Path To Follow Was Formed: My Personal Journey Part 1

How A Path To Follow Was Formed: A Journey Through Mental Health System Challenges I started writing this blog post in 2017, around the time of navigating mental health services for our 16 year old son and eventually came to realise a couple of things: no amount of journaling is going to provide me the usual relief I get from writing and by the time I finish describing our experience, other potential families will enter this system under supported. So, I postponed procrastinating on my post and just kept volunteering and working; helping those I could, in ways I could. Yep, it’s now 2019 and last week our son turned 18. At times I didn’t think we’d be lucky enough to see that and although it’s been the hardest, most traumatic journey of our lives so far, we are so proud to have walked (often crawled) through this with him; alongside our other two beautiful sons. With his permission, we share this story, in the hope that it helps others; those navigating the service system, those who still live untouched by such experiences, but willing to learn, those who work within the system and the wider community.  It is also a tribute to him and our whole family; what we have faced, accepted and battled, as part of this journey, to be where we are today.  I have finally realised there will never come a time where our journey will make complete sense or, in some ways, be over.  We are a family still in tack; forever different and living separately but surviving and learning to enjoy the precious small moments that come our way. The mental health challenges our son faced and continues to face, along with the associated trauma and grief experienced by our family, are the determining factors, along with my professional experience in the field, in deciding to turn my volunteer initiative into a small business. Young People, families, community need more; need it differently and if we wait around for the royal commission into mental health report and implementation of those recommendations, thousands of more lives will be lost and more of our community will struggle to live with mental health challenges without appropriate support. I never, even as a parent who experienced mental health challenges, and as a professional with sound knowledge of the mental health system, could have foreseen the complexity, the gut wrenching pain, the drawn out time and sheer shock and trauma of what we were about experience and as a result, put our child through; vicariously traumatising our whole family unit along the way. So, what did we learn and why has this resulted in the launch of our peer support mentoring program, championed by lived experience?  Let me describe our Journey and hopefully it will become clear…   The major learnings That it’s not all bad; let me be up front. Although our journey was horrid and traumatising, there were shining lights in that journey, which enabled us to keep going. Here I talk of the Adult Alfred CATT team we had to consult out of hours & advocated for us from first phone call to eventual admission, the Austin hospital staff and one important member of Monash inpatient unit, who realised keeping our child as an inpatient was going to do more harm than good… We fully recognise and respect that there are good mental health clinicians, all of whom are working under constant funding model restrictions and resourcing pressures, for the good of our community. Lesson: Like every workplace; there are great staff and not so great staff. Unlike other fields, though, there is ALWAYS additional pressures they all work under due to the very nature of our country’s lack of commitment to mental health. Our Model: Committed to working with these awesome staff, who cannot, even if they wanted to, provide everything a young person and family need, in terms of support. Schools are not readily equipped or supported to effectively manage complex mental health challenges and suicide. Our son’s journey really began when he and his fellow students were largely left unsupported after the death by suicides of two of their classmates, within 12 months. Lesson: Sometimes the education system can still see behaviours related to mental well-being challenges as simply “naughty” and are not given sufficient mental well-being support to effectively guide our students. Our Model: Committed to advocacy with schools, on behalf of young people and their families. The youth semi acute system (where patients with more complex challenges are referred) also work under continual pressure and as a result, can fail those in need of their services to prevent them from entering the acute hospital system. We first sought their services close to discovering our son’s experiences of panic attacks, self-harming and voices telling him to hurt himself. On assessment he was deemed not acute enough to become a client of their service. He was justifiably scared, lied and/or minimised his symptoms, alone in a room with professional strangers. Even after we explained that we thought he was lying it was recommended we seek private psychology. Lesson:  The threshold to enter our acute (hospital) and sub-acute (CYMHS) has increased dramatically; to the point that you either need to be immediately deemed you will hurt yourself. Our Model: Not catchment bound, nor bound by any funding model that determines who we support, how long we support for and how that support looks. Flexible and customised. We did seek private psychological service. It seemed to work for a while, or did it? Turned out that our son went on hiding and minimising his symptoms, again justifiably in our current society, until he could no longer. Upon disclosing his voices; he was immediately deemed too complex for the current service and psychiatric intervention was recommended. There was no risk assessment completed; he couldn’t tell me who our son’s voices were telling him to hurt…only that they were.  I had to find that out, in the car,

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