WayAhead

Mental Health - Education, Support and Prevention

2019 AGM and Stephanie Dartnall

WayAhead AGM with special guest speaker Stephanie Dartnall

WayAhead’s 2019 Annual General Meeting

Tuesday 26th November  |  6pm
Level 5, 80 William St Woolloomooloo

 
This year we have special guest speaker Stephanie Dartnell.

Stephanie Dartnall is a PhD candidate in the School of Psychology, Charles Sturt University and a registered psychologist (B Psych, M Psych [Foren], UNSW) with ten years’ experience working with families of missing people. Her research applied quantitative and qualitative approaches to explore coronial investigations into missing people in NSW, to reveal what happens in coronial proceedings and the perspectives and lived experiences of families and professionals involved in the Coroner’s Court. Stephanie’s research began with the creation of a plain language guide for families, and an examination of 322 closed coronial investigations in NSW, which revealed the frequency of missing persons’ investigations and the types of findings and recommendations made by coroners in “suspected death” cases.

At the 2019 AGM Stephanie will explore the findings from her most recent study based on in-depth interviews with 15 families and friends of missing people about their experience of a closed coronial investigation in NSW. Families shared their views on the impact of coronial proceedings on wellbeing, and best practice approaches to support and inform families throughout a coronial investigation. This is the first study to examine the views of families where a death is yet to be established by a coroner, and one of the few Australian projects to explore family views of coronial proceedings. The results shed light on measures that were helpful and unhelpful to families, strategies to minimise harm, and helps illustrate the coronial process for professionals and other families. Such information is vital to a vulnerable population who navigate this court process in the midst of the ongoing trauma of ambiguous loss. These findings are timely in the context of national legislative reforms focussed on improving information and support to families impacted by coronial proceedings.

Please RSVP to the AGM to elizabeth.priestley@wayahead.org.au 

Workplaces as communities – WayAhead Workplaces Annual Forum 2019

Attendees at the Workplaces forum

Workplaces as Communities. Workplaces as part of Communities. What is our Impact?

That is the question that was asked at this year’s WayAhead Workplaces Annual Forum. The yearly meeting brings together members of the WayAhead Workplaces Network to meet peers, learn from the latest research and hear about the newest programs encouraging good workplace wellbeing.

[For professional photos from the event, visit: wayahead-workplaces-annual-forum-2019]

This year, attendees had the opportunity to hear from, and engage in conversations with, a range of different speakers. Presenters included Pete Jensen from The Art of Work, Dr Michelle Lim from the Australian Coalition to End Loneliness and Swinburne University of Technology, Carmen Betterridge from Suicide Risk Assessment Australia, Mark Pittman from Allianz, and Steve Kimmens from my career habit.

Catherine Lourey, NSW Mental Health Commissioner, and Robyn Hobbs OAM, NSW Small Business Commissioner, opened the day with insights from their work speaking with people about their concerns around NSW.

Pete Jensen, Director of Wellbeing at Art of Work, spoke about the importance of treating the causes of unhappiness in the workplace. He used the analogy of using paracetamol to treat a headache, when it is caused by dehydration and can be more effectively treated by drinking water. In the same way, he encouraged workplaces to cultivate environments where employees and employers could have open and supportive conversations.

Carmen Betteridge, psychologist and Director of Suicide Risk Assessment Australia, spoke about the importance of workplaces working with managers, staff and families to put practices in place to support employees, including normalising difficult conversations. She spoke about workplaces as having an important role in the community in breaking down stigma.

Dr Michelle Lim, the Scientific Chair of the Australian Coalition to End Loneliness and Clinical Psychologist and Head of the Social Health and Wellbeing (SHAW) Laboratory at Swinburne University of Technology, spoke about her research and findings into loneliness and it’s impact in the workplace. She drew out the differences between loneliness and social isolation, busted myths about which ages felt most lonely and encouraged people and workplaces to destigmatise loneliness by recognising it as a need, like hunger or thirst, to connect.

Mark Pittman, General Manager at Allianz working in government services and workers compensation, spoke about a trial of a new workplace wellbeing initiative, Here’s a Thought, run by Matthew Johnstone. The program involved brief emails being sent to program participants to encourage them to engage with topics like stress and sleep.

The last speaker, Steve Kimmens, Career Wellbeing Facilitator and founder of my career habit, spoke about the importance of building connections at work for both personal mental and physical wellbeing, but also for the wellbeing of organisations. In fact, you can hear about what he spoke about in his own words.

Attendees enjoyed the topics covered and the theme of the day.

“I love the whole theme around the communities, it’s so, so important and vital…we did some research at the end of last year on leaders in workplaces and what it is that enables them to thrive,” said Sophie Hart of The Serenity Collective.

“Community and connection…came out as the most important thing for them so [the Forum] is certainly really topical.”

The team at WayAhead would like to extend a big thank you to Aon Australia for hosting us again.

For professional photos from the event, visit: wayahead-workplaces-annual-forum-2019

 

 

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The Buried in Treasures Workshops

Buried in Treasures

This October, WayAhead is bringing international leading experts in how to support people living with hoarding disorder who collect and clutter, Lee Shuer and Bec Belofsky to Sydney from Massachusetts, USA. Lee and Bec are in Sydney to run two events helping service providers facilitate workshops for people who collect and clutter and a public talk designed to educate the community on why people collect and clutter and pathways to recovery.

Buried in Treasure workshop – facilitator training

Wednesday 17 October – Friday 19 October
Collective Purpose – 80 William Street, Woolloomooloo
Only 20 places available – $750.00.

BOOK NOW

This three-day facilitator training helps prepare people to facilitate an evidence-based, life-changing workshop for people who struggle with too much stuff. Attendees of the Buried in Treasure facilitator training will: Attendees of the BIT Workshop Facilitator Training will:

  • Review the latest clinical and peer support research
  • Discuss the impacts of negative attitudes towards people with too much stuff and how to help restore hope and empathy
  • Learn how to facilitate The Buried in Treasures Workshop through demonstration and direct participation and practice
  • Gain facilitation skills and learn about group dynamics

How do we help people struggling with hoarding behaviors? Public talk

Monday 15 October – 6:00pm – 7:30pm BOOKED OUT
Tuesday 16th October – 6:00pm – 7:30pm
Collective Purpose – 80 William Street, Woolloomooloo
$5 Concession / $10 Full admission

BOOK NOW

This public event is designed to help anyone who has ever wanted to understand more about why people collect too much stuff and what the best ways to help people struggling with hoarding behaviors are. Lee and Bec will discuss the latest research and also explain how stigma negatively impacts people and ways to overcome it.

The latest in Australian memoirs

A number of new memoirs have been released in the last few months, exploring the experiences of those who have either experienced illness first hand or have cared for those with mental ill health.

Addiction in women isn’t often talked about but Woman of Substances, Jenny Valentish’s research treatise and memoir, never shies away. Having started drinking at 13, she writes about using drugs such as marijuana, ecstasy, speed, heroin, and crack in her late teens and early 20s. Valentish pairs her experiences with the latest in neuroscience and insights from social workers, academics and others experiencing addiction, in order to highlight the gendered elements of addiction and treatment.

 

 

 

Simon Gillard’s memoir, Life Sentence: A Police Officer’s Battle with PTSD, written with Libby Harkness, explores the highs and lows of his life as a police officer. Despite achieving his childhood dreams of joining the police force, the traumatic things Gillard saw and experienced had a profound impact on him. Despite experiencing nightmares, panic attacks and thoughts of suicide, he knew speaking about his Post-Traumatic Stress Disorder would end his career. However, he shares his experiences in the book to help others and tackle the stigma.

 

 

 

Cold Vein, written by Anne Tonner, a human rights lawyer and mother of four, details the harrowing struggle she and her family faced while supporting her 13-year-old daughter, Chloe, through an eating disorder. Tonner writes of her despair and desperation as treatments in Australia repeatedly fail and the eventual decision to fly Chloe to a specialist treatment clinic in Sweden as a last attempt. This beautifully written and unflinching book also won the 2017 Finch Memoir Prize.

By Tasnim Hossain

 

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Meet Alice Cheok: The Grateful Refugee

It is stories like Alice Cheok’s that remind us that while migrants have a past, they also have a future here and have so much to offer to the Australian community.

It is stories like Alice Cheok’s that remind us that while migrants have a past, they also have a future here and have so much to offer to the Australian community.

Alice (left) with Cindee (writer)

When I first spoke to Alice, I felt immediately at ease, like a patient confiding in their trusted counsellor. She had a soft voice – the kind where if you were having a bad day, she would be there to listen and guide you.

Alice was a refugee. Her journey began when she was just a child, getting ready to go on an exciting trip – or so she thought. Her whole family was there: her mum and dad, two brothers and her sister. She remembered it was dark and very quiet, with the sea huge and daunting. Alice was only 12 years old when her family had to leave their home in Saigon (now known as Ho Chi Minh City) in Vietnam, for a new life in Australia.

Alice and her family were one of the many Chinese-Vietnamese refugees resettled in Australia in the late 1970s.

She has come a long way since leaving Vietnam in search for freedom. When her family first reached Australia, they were immediately put into Pennington Hostel for refugees in South Australia where they stayed for two months.

At the time, there were lots of Chinese migrants working in restaurants as kitchen-hands or waiters and waitresses. It was a huge change for her family, especially for her father who was a businessman back in Vietnam. He had to work as a cook in a Chinese restaurant and eventually injured himself through years of straining his arms.

Like most migrant families, Alice’s mother also had to work in order to provide for their family. Alice’s father went from being the sole breadwinner to becoming very depressed because he felt like he was not doing enough.

He never addressed this, though.

“I think some sort of social support or even counselling would help a great deal especially for people like us. People tend to think everyone else is fine because no one talks about it. But when you have these issues, you should go to talk to someone, like going to talk to a friend or a professional,” Alice said.

“They see it as a weakness.”

Alice’s thoughts ring true for many Asian migrants coping in a new country. When Alice and her family were initially settled into the community, they received some help with finding a place to live, finding work and enrolling into school. But none of the social services at the time dealt with their mental health.

“My parents had a huge lack of understanding of what mental health is. They picture someone in a strait jacket or someone having severe schizophrenia and we feel like it is embarrassing or shameful to seek help but we should try to normalise this especially for people like my dad.”

Alice not only had to deal with family problems at home, she was also bullied at school for not knowing how to speak English. She attended a high school where she was only one of two Chinese students and the only one with a refugee background. Even though she had school and was working at the Chinese restaurant with her parents at night, Alice practiced her English every day until she could speak the language right.

It took Alice a long time to figure out which career path she wanted. With her soft voice and understanding nature, it is hard for me to imagine Alice as anything but a counsellor for young adults, but she told me of her struggles to the right path for her.

Armed with her hospitality experience and interest in science, Alice completed her first degree: a Bachelor of Science, majoring in Organic Chemistry and Microbiology. She did some sales training at an insurance company, but the only person she managed to sell insurance to was her own mother. For her, this was a stepping stone to get into pharmaceuticals but she also faced challenges there.

“I cried every Sunday because of the week ahead, I was so miserable with that job. I respected doctors too much to think I knew enough to sell them anything and getting past the receptionist was very hard because they were very mean to sales people.”

Alice wanted to change her career path so her friends told her to look into the marketing side for pharmaceuticals instead. Eventually she landed a marketing job where she worked for 20 years but one day it hit her that she did not want to be doing this for another 20 years.

“I realised what I liked doing was listening to other people’s stories and I thought about it – what job is that? I went to a career expo with a friend and there were many organisations advertising for mentoring and counselling banners. I thought, well that’s interesting and I found out I could do a Diploma of Counselling online.”

It took Alice seven years to complete her Diploma but during this time, she had discovered that she truly enjoyed working with young people after some volunteer experience at Raise, the Youth Mentoring Foundation.

“There is a big difference in wages but I had support from my husband so I committed to that area and then I had to build up my credentials and experience. Through Raise, I was able to volunteer at KYDS [Kids Youth Development Service] and I’ve been volunteering here for a year and a half, and now I have a job here.”

Alice hopes to work for a mental health organisation with a focus on adolescents and family mental health. She has realised that her different cultural background, as well as the training and communication skills from her sales job, have definitely helped her gain perspective on her clients.

“Because of my background, I definitely see kids experiencing the same challenges that I did. I had the Chinese side of me that really wanted to please my parents and I had my Aussie side with my friends. For young people, the majority of their friends have different values to their families but they cannot please everyone. They feel like they are letting their parents down,” she recalled.

Many Asian parents have a narrow view of success which essentially is getting good grades and then getting a good job that makes money. From many parents’ point of view this is because they may have lived a life of struggles where they were not given opportunities to gain an education or pursue jobs that looked after you. From their point of view, this success equates with happiness.

“They don’t understand that here in Australia, there are different types of success… If you don’t go to uni now, you can do it later. Aussies can do anything at any time of their lives.”

Alice didn’t know this but when she was talking about her experiences, I felt like she was mentoring me. I am a final year uni student without a clue about where I will end up after graduation. But speaking to Alice made me feel like it’s okay that I don’t have my life figured out yet and wherever I end up will be a stepping stone for me.

Alice said she was grateful to be given opportunities here in Australia and she plans to complete her Master of Social Work and Counselling. I wish her all the best in her studies and I have no doubt that she has so much to contribute to the Australian community.

Cindee Duong

An Update of Research into Anxiety

Summary of the paper: Anxiety Disorders, by Michelle G. Craske, Murray B. Stein, Thalia C. Eley, Mohammed R. Milad, Andrew Holmes, Ronald M. Rapee, and Hans-Ulrich Wittchen; (in press; 2017) Nature Reviews Disease Primers.

Precis by Ronald M Rapee, Centre for Emotional Health, Department of Psychology, Macquarie University.

In 2010 approx. 60 millionEuropeans experienced anxiety disorders leading to a cost of over 74 billion euros.

In late 2016, several international researchers, who specialise in different aspects of anxiety disorders, were asked to prepare an update and overview of what we currently know about anxiety disorders for a major scientific journal – Nature Reviews Disease Primers. This update is highly technical and is aimed at scientists, therapists, and students. In the following article, I will provide a short summary of the key points from this paper, hopefully in a way that is more accessible to everyone. I won’t try and cover everything in the original review, but will focus on areas that I think will be of most interest to readers. Anyone who wants to read the original is encouraged to do so.

Introduction

The paper begins by pointing out that anxiety disorders include the largest group of mental disorders, are a serious source of disability, and cost our society a great deal (one study estimated that in 2010, approximately 60 million Europeans experienced anxiety disorders leading to a cost of over 74 billion Euros).

The key features of anxiety include excessive and persistent fears along with extensive avoidance. Anxiety disorders often begin in childhood or adolescence and are typically long-lasting – without treatment, they can last for much of a person’s lifetime.

Importantly, anxiety is a normal emotion that varies in degree. Similarly, anxiety disorders can vary from mild to severe. In other words, people with anxiety disorders don’t “catch” some sort of “sickness” – rather, they differ from people without anxiety disorders simply in the extent or degree of their anxiousness and in the impact this has on their life. There is no simple cut-off point.

Statistics

The World Mental Health Survey is a large survey that measured the experience of a wide range of mental disorders from countries right across the world. They found that the chances of a person having an anxiety disorder at some point in their life ranged from 5% (China) to 31% (USA) with an average of 25%. In other words, on average, one person in four, will experience an anxiety disorder at some point in their life. Within a one-year period, an average of 12% of the world’s population has a diagnosable anxiety disorder. Anxiety disorders typically start early in life and most people who are going to experience an anxiety disorder in their life, will already have one by their early adulthood. Like the other anxiety disorders, generalised anxiety disorder also often begins in childhood or adolescence, but it can start for the first time in adulthood or even older adulthood.

Some features increase the chances of people experiencing anxiety disorders. Females are approximately twice as likely as males to have an anxiety disorder. People who have a parent with an anxiety disorder are approximately 2-4 times more likely to also have one themselves. Experiencing stressful life events can increase the chances of having a later anxiety disorder. Anxiety disorders are also more likely among people who were very shy and withdrawn in their early years, or who had a parent who was quite overprotective or negative.

People who have anxiety disorders, especially in their early years, are more likely to experience later depression and substance use problems.

Brain systems

Image showing where the amygdala is in the brainThe paper provided an overview of some of the latest understanding of the parts of the brain that underpin anxiety and fear and how these circuits work. I won’t try and summarise that here. However, a few interesting points can be summarised.

There have been some great advances in starting to identify some of the parts of the brain that are involved in experiencing fear and anxiety. One of the most widely discussed is called the amygdala, two areas deep in the brain that seems to be involved in learning about fear, danger, and safety and in helping to form fear memories. People with anxiety disorders seem to have a more reactive amygdala. More recent research is starting to identify important areas right across the brain that are involved in different aspects related to anxiety. One of the important findings is that these brain areas don’t seem to follow specific anxiety disorders. In other words, there isn’t a social anxiety part of the brain, and a separation anxiety part of the brain, and so on. This implies that the way that we talk about anxiety disorders in clinical practice, is not the way they are represented in the brain, and in the future, we will need to develop better ways of conceptualising these disorders.

Genes

One area where we have made huge advances in recent years is how our genes influence a range of issues and diseases. There is now no doubt that anxiety disorders are largely genetically affected. It seems that around 30-40% of the extent to which people vary in anxiety is genetic. The particular genes that are involved have not yet been identified and there are likely to be many, many of these.

One thing that is clear is that if genes affect up to 40% of the extent to which a person is anxious, then the environment must also be very important (up to 60%).

Current research is looking at ways in which genes and environments might work together. For example, a child who is genetically very shy and sensitive, might become a target for bullies. In turn, being bullied (part of the environment) might increase his/her anxiety.

Prevention

In more recent years, scientists have started to think that it might be possible to prevent people from developing problems with anxiety before they happen. There have been some real advances here – although we are still a long way from being able to properly prevent this problem.

One type of prevention has focused on teaching practical skills (such as problem-solving) to all of the children in a school year or even across a school. These programs are often delivered by the school teachers. Effects have been small, but nonetheless, these programs have started to show some real reduction in both anxiety and depression up to one year later.

Another form of prevention has tried to identify those children who might be at higher risk for later anxiety (and depression). As we mentioned above, two risk factors include having a shy, withdrawn temperament or having overprotective or negative interactions with parents. Very little research has been aimed at this form of prevention, but some results are very promising. In one of the biggest studies, teaching practical skills to the parents of very shy pre-school children, led to fewer anxiety and depression disorders 11 years later (when those children reached their middle teens).

A third type of prevention has focused on selecting those people (usually school-age) who are already showing some signs of anxiety. These studies are usually run in schools and use questionnaires to identify young people who have high(ish) anxiety, but not necessarily an anxiety disorder. These studies have shown some of the biggest effects that last up to one year later, but again, overall effects are not large.

Treatment

Treatments for anxiety have not changed dramatically in many years. But research continues to refine the treatments and to show which ones work. We now have a lot of evidence that cognitive behaviour therapy (CBT) works very well for people with anxiety disorders at all ages (younger, adult, older adult). Following CBT around 50% of people with anxiety disorders reduce their symptoms to the level of the general population. Of course, even among the remaining 50%, many of them show very good improvements. Other forms of psychological treatment have not been shown to work as well. This doesn’t mean they won’t work for some individuals but, either we don’t yet have the evidence, or their effects in general seem smaller.

Medications for anxiety have also been widely tested and show good results. The most widely studied are the antidepressants, especially those referred to as SSRIs. These medications work well for anxiety and their effects are roughly similar to CBT. Other medications also work, especially one group referred to as benzodiazepines (one example is Valium). However, because they have a higher risk for abuse, they are usually recommended as a second choice.

Ending

The paper finished with a detailed look at some of the newer and more experimental areas that are being explored for anxiety disorders. There are new and exciting possibilities in understanding the mechanisms and causes of anxiety, in the prevention of anxiety, and in its treatment. At this stage few of these directions has yet built up enough evidence to use them in any meaningful way or to recommend them to the public. The main exception is the use of distance therapies – that is, CBT that is run over the internet, via telephone, or through apps. These methods of distributing treatment are starting to be very well tested and they seem to show effects that are as good, or almost as good, as CBT in a therapist’s office. Their two biggest advantages are 1) they can be delivered to people anywhere (including rural and remote parts of Australia), and 2) they usually require less time from a therapist making them cheaper and easier to use within our public health systems.

Original Article on Understanding Anxiety site
 

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The Chatswood Mental Health Expo – A Volunteer’s Perspective

In April, WayAhead, in partnership with Willoughby City Council and Australian Chinese Psychological Association, held a Mental Health Expo in Chatswood that targeted the Chinese community for the first time. I was looking forward to volunteering on the day because even though I am Chinese-Australian, to participate in a conversation about mental health with the Chinese community was completely foreign to me.

Breaking into the Chinese community was difficult at first, not only because of the cultural and language barriers, but also largely due to the stigma and their preconceived ideas surrounding mental health. Many members of the Chinese community hold a very negative view of mental health, where it is embarrassing or even shameful to experience. Often, there is a belief that very serious mental health disorders are the only mental health concern and as a result of this, mental health is rarely addressed or talked about.

Out of sight, out of mind.

Except we were right at in the heart of Chatswood Mall, handing out specially-translated flyers in Chinese so that we could communicate directly to the Chinese community.

I was very surprised with what I learnt from this experience and I would like to share this with you.

In my experience, Asian communities – especially Chinese speakers – are generally distrustful of strangers who are foreign to them. Many were intrigued by the Expo, enticed by the free food, even dazzled by the tai-chi performances and stilt walkers, but they still needed more encouragement to approach our stall and start a conversation about mental health. They were more reserved than your usual shoppers. Luckily, our team at WayAhead had many bilingual volunteers and by speaking in Chinese to passers-by, I found that they were much more at ease and even became curious about what we were doing.

Through our conversations, I found that most of the Chinese community were quite disconnected with their mental health. Most seemed to equate mental health with feelings of sadness or depression. One woman told me that she was 70 years old and very happy – therefore she didn’t need our services. But before she left, I quickly asked if she had any children or grandchildren who may be under a lot of pressure from their work or studies. Her tone drastically changed when we started to chat about her grandchildren who I learnt were under so much stress because they were studying for their HSC this year. As I handed her some information booklets in Chinese, I told her that at WayAhead, we want to raise awareness and start conversations about mental health with the Chinese community because we all want our family and loved ones to be safe and healthy.

Cindee with the Kyds stall at the Mental Health Expo

My biggest find was that while many Chinese people from the older generation did not understand mental health, they did have family members who may have been diagnosed with anxiety or depression, or had seen that their family were under a lot of stress and wanted to learn more about it to help themselves help their family. This became a recurring conversation; I would ask about their family members and they would suddenly realise that they would benefit from this information – maybe not for themselves but for their family.

I was pleasantly surprised because I had expected the older generation to almost completely reject the idea of mental health issues (although this was also a common response). From personal experience, it is common that mental health issues within family circles tend to stay within family circles – almost a taboo to speak about to other people, as though it was something to be ashamed about. One of the reasons we held this Mental Health Expo was to normalise the conversation of poor mental health and create an open space where people from the Chinese community could engage and ask questions.

I am very pleased that WayAhead organised this event in Chatswood and was able to open up dialogue within the Chinese community to talk about such taboos.

By Cindee Duong

Link to Mental Health Expo Page

Change of Mind: Hep C Treatment

The prevalence of hepatitis C in people with mental illness is known to be higher than it is in the general population, but recent medical advances present an opportunity to address this. In a new campaign called Change of Mind, Hepatitis NSW is encouraging people who live with hep C and who also experience mental health issues, to reconsider treatment for their hep C.

Academic studies have found rates of hep C between 3% and 42% amongst people in Australian psychiatric hospitals[1], compared to just 1% population-wide.  As with other physical health issues, some health professionals may undertreat hep C among people living with mental illness. There are a number of reasons for this, including the difficult side effects of previous treatments.

However, the treatment for hepatitis C has been revolutionised in the past 12 months with the introduction of Direct Acting Antiviral medications with very high cure rates and minimal side effects. Importantly, these medications have replaced previous hep C drugs that caused mental health side-effects, including causing or exacerbating depression.

Hepatitis NSW is concerned that a lack of awareness of this treatment revolution is preventing greater uptake of these new treatments. To counter this, Hepatitis NSW is running a community-based hep C treatment campaign from now until July 2017, with a particular focus on engaging with mental health care coordinators. This campaign will emphasise three specific messages:

  1. Hep C is higher among people with diagnosed mental health issues
  2. The good news is that hep C can now be easily treated, and cured
  3. Even more good news: curing hep C can have multiple health benefits, including in terms of mental health benefits

Support groups across NSW are encouraged to foster discussion of hep C treatment. Hepatitis NSW will be working with NGO mental health service delivery organisations in NSW.  Community mental health organisations engaged in direct service delivery to people who experience mental health issues are also encouraged to get behind this campaign, and help make hep C treatment a reality. For more information about hep C, and the new treatments, visit www.hep.org.au or call the Hepatitis Infoline on 1800 803 990.

[1] Rose Grenville, Cama Elena, Brener Loren, Treloar Carla (2013) Knowledge and attitudes towards hepatitis C and injecting drug use among mental-health support workers of a community managed organisation. Australian Health Review 37, 654-659

The Big Black Hole: Functional Neurological Disorder [FND] / Conversion Disorder [CD]

Falling through the gaps in the system between neurology and psychiatry – The disconnect between Mind and Body

Like many people with functional [also known as conversion or psychogenic] symptoms it has been a difficult road to travel. My symptoms began suddenly. At the time I was very active, regularly going to the gym and enjoying competitive dancing. I remember lying down one afternoon while not feeling well, and when I went to get up, a short time later, I realised I could not move my left side, I could not ‘remember’ how to walk, and I could not even lift my left foot off the ground. It was a frightening and bizarre experience. I was rushed to Emergency and subsequently spent several weeks in a neurology ward. Initially the neurologists diagnosed me with a stroke. Sometime later the neurologists determined it was not a stroke, but because it was ‘presenting as a stroke they would treat it as a stroke’. It took several years before I found out the correct diagnosis, of FND.

Like people paralysed with a stroke, learning to walk again was challenging. I can remember watching my baby nephews learning to walk, and they seemed to be doing better than me. I was determined I would walk again. For a while I was in a wheelchair, and eventually on mobility aids. I told the physio I wanted to walk independently and she reminded me that I needed to ‘set a realistic goal’. I was placed in a ward where the average age of people on the unit was 89 years. I was in my 30’s. I didn’t want to be treated like the older people. I wanted to push forward, to take risks, so I could walk normally, and return to my active lifestyle and get back to work.

It did take a long time to be able to walk independently again. I left the hospital on crutches, and I struggled to find appropriate support services to help my walking. When it was eventually determined that I hadn’t had a stroke everyone seemed to be at a loss with what to do with me. I had severely disabling symptoms, I was totally unable to walk and stand independently, yet despite extensive testing there appeared to be no cause for the symptoms. I began to wonder if I had some dreadful, perhaps life threatening disease that the medical profession had not yet identified. It was a scary place to be in. After all the testing showed there was no organic disease or illness, I was placed in the too hard baskets, and there was no way to progress forward.

When the health profession seemed to give up on me, I took on the challenge of learning to walk by myself. I started using the stair railing at home to support my walking, and eventually I put down all the mobility aids and let my two dogs assist me with walking. The dogs helped to carry my weight and pull me forward, helping me to get the walking patterning happening. Slowly I got there, I had many falls, but I got back up and kept going, and about 18 months later I was walking reasonably normally.

Over time symptoms would re-emerge. When they first re-appeared I was scared at what was happening to my body and I would be rushed back to neurology, and again there would be nothing wrong and I would have to go through the challenges of learning to walk again. But each time, my walking came back much quicker. I started to see a pattern for when the symptoms would flare up. Knowing I could teach myself to walk again, I decided not to go back to the hospital or doctors when the symptoms came on; it was quicker, easier and less frustrating for me to manage on my own. The doctors still didn’t seem to know what was going on with me, but I seemed to be able to work out how to manage it and recover my walking on my own.

Many years later I was collecting a copy of my medical records from my GP, and found that on one occasion the hospital had noted the cause of my symptoms as ‘functional neurological disorder’, although it had not been discussed with me at the time. My GP did not know what this was, and couldn’t tell me anything about it. I began to research the disorder. I saw that it was also known as conversion disorder [CD], historically thought to be associated with trauma. The current understanding of FND/CD is that a combination of physical, psychological and social factors may contribute towards a person’s vulnerability to developing FND. I learned that functional disorders often present similarly to neurological diseases such as a stroke, Multiple Sclerosis, Parkinson’s and Epilepsy, and can be just as debilitating and distressing, yet they are not caused by structural disease of the nervous system, but a problem with the “functioning” of the nervous system1 . fMRI studies showed that the brain fails to send and receive messages correctly, impacting on how the body responds to different tasks such as, movement control, and that emotional triggers can impact on the motor pathways in the brain.

I started to trace the pattern of symptoms, when they occurred and how I seemed to manage to keep the symptoms at bay. It all began to fit into place. At the time no one had explained the diagnosis to me, what it was, what it meant, and how to manage it. Once I knew what I was dealing with, I was able to get a good grasp on how to manage the symptoms, to prevent reoccurrence.

I found dealing with the health system frustrating. After I got a good understanding of the diagnosis, I found none of the doctors or other health practitioners seemed to have an understanding of the illness. I was educating all the practitioners I was seeing. Following BAHA cochlear implant surgery, I had a relapse of my condition and this time I was worried I would be back in a wheelchair for life. But, a few months later I was back on my feet, walking dogs, doing aerobics and ready to get back into life.

There is an urgent need to increase awareness of the disorder across health and across community. Had I known what I was dealing with earlier on, I think my journey to recovery would have been easier. I was able to learn about the illness, and work out ways to self-manage the illness, as I could research and understand academic papers. Other people may not have access to those resources.

There is a huge amount of stigma and discrimination with this illness in health and society. Because the illness has a mental health association, the physical health sector doesn’t want to deal with it, and because of the significant disabling physical symptoms, mental health can’t deal with the problems. There needs to be a multi-disciplinary approach that addresses both the physical and mental health aspects of the illness. At the moment people are falling in the black hole between neurology and psychiatry.

In society I think people are scared of what they don’t understand. When people experience significant physical flare-ups of the illness, whether it is paralysis, seizures or movement disorders, it can look frightening and serious to others. Observers don’t understand what is happening and become worried and perhaps over-react or misinterpret what is going on. When this happens, those  who suffer from the illness then get excluded from society, they lose employment and other opportunities to engage and participate in the community. When symptoms flare up, I need to stay calm and grounded to help regulate the nervous symptom, but if others are panicking and overreacting, it exacerbates the problem.

I regard myself as lucky. While it has been hard work, I know I could have spent the rest of my life in a wheelchair. It is only through hard work, determination and fight, that I am able to walk, and because I had the resources to be able to research and understand the disorder, so I could understand how to help myself. I see others with FND/CD suffering severe physical symptoms, completely unable to engage in life, and desperately trying and failing to get answers from the medical profession.

I am currently working with FNDHope International fndhope.org to set up an Australian arm. I hope in the future to be able to offer peer support, information and advocacy to help others with this condition. I am looking to do a consumer-led research project on this disorder, to help the system understand the urgent need to address the problem, and also to capture stories of recovery, resilience and hope. Currently there are no treatment programs for the disorder in NSW, no organisations or support groups addressing this problem and little research happening in Australia. Hopefully FNDHope Australia can help to increase understanding and awareness of the illness, improve pathways to care, and outcomes for consumers to participate fully in life.

Dr. Katherine H. Gill
Australian Representative
FNDHope International
fndhope.org

Reference to Websites for Further Information

http://www.mayoclinic.org/diseases-conditions/conversion-disorder/basics/definition/con-20029533

http://www.fndaction.org.uk/

 

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