#87 • September 2020
Community News
World Hepatitis Day 2020 Plus Positive Speakers and more
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Hepatitis SA provides free information and education on viral hepatitis, and support to people living with viral hepatitis. Street Address: 3 Hackney Road, Hackney Postal Address:
PO Box 782 Kent Town SA 5071
Phone:
Fax:
(08) 8362 8443 1800 437 222 (08) 8362 8559
HEPATITIS SA BOARD Chair Arieta Papadelos Vice Chair Bill Gaston Secretary Deb Perks Treasurer Michael Larkin Ordinary Members Julio Alejo John Beeslee Catherine Ferguson Sharon Jennings Bernie McGinnes Sam Raven Kerry Paterson (CEO)
ISSN 2651-9011 (Online)
Online: www.hepsa.asn.au HepSAY Blog: hepsa.asn.au/blog Library: hepsa.asn.au/library @HepatitisSA @hep_sa Resources: issuu.com/hepccsa Email: admin@hepatitissa.asn.au Cover: ‘Let’s Go Viral’, the heart of Hepatitis SA’s 2020 World Hepatitis Day campaign (see p2 for more information) Correspondence: Please send all correspondence to The Editor at PO Box 782, Kent Town, SA 5071, or email editor@hepatitissa.asn.au. Editor: James Morrison Some photos in this publication have been altered to disguise identifying details of members of the public.
Contents
1 Education & Quilts 2 World Hepatitis Day 4 World Hepatitis Day & the Chinese Community 6 Positive Speaking 8 David’s Story 11 What’s On? / CNP Info 12 Farewelling Fred 14 In Our Library Disclaimer: Views expressed in this newsletter are not necessarily those of Hepatitis SA. Information contained in this newsletter is not intended to take the place of medical advice given by your doctor or specialist. We welcome contributions from Hepatitis SA members and the general public. SA Health has contributed funds towards this program.
Recovery
What does it mean to you?
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hat is recovery? What does it look like? What does it mean to you? Love. Kindness. Forgiveness. Support. Laughter. Freedom. Healthy living. Balance. Selfcare. Life. These were the key themes identified in 2018 through a quilting project we carried out as a community health promotion using art. Inspired by a similar project completed for World Overdose Day, the Hepatitis SA education team worked
with two community groups living with alcohol or drug challenges to explore the idea of recovery: the Englishspeaking and Vietnamesespeaking Users’ Groups at Community Access and Services SA (CASSA), and residents at The Woolshed therapeutic community. Hepatitis SA educators led group discussions on issues including viral hepatitis, prevention and staying safe, support services, and exploring hopes and goals for the future. The participants were then invited to create a quilting square with a message or image about recovery. More than 40
One of the finished quilts, 2020
community members participated in the project across the two sites. With the group sessions completed, the next step was to put the individual squares together on a quilted backing—a sizable amount of work. It was not until 2020’s COVID-19 lockdown period that the team had the opportunity to devote the time and skill needed to finalise the project. The finished result of this work was two beautifully colourful and textured quilts which will be presented to CASSA and The Woolshed to display on site. A special thank you to educator Gary for his sewing expertise, and to all the community members who shared their stories and contributed to this project. v
Making the quilt squares, 2018
September 2020 • HEPATITIS SA COMMUNITY NEWS 87
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World Hepatitis Day 2020 Going viral
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n July 28, Hepatitis SA celebrated World Hepatitis Day. Of course, this year activities had to adhere to social-distancing guidelines. To mark the occasion, we launched the Let’s Go Viral online trivia competition for all South Australians, a Let’s Talk Hep competition for people in prison and clients of peer-staffed Clean Needle Programs, and ran a quiz with the Overseas Chinese Association (see p4). South Australians who participated in the Let’s Go Viral online trivia quiz had a chance to win a one-night stay in a Piccadilly Valley View Room with breakfast included at Mount Lofty House (Travellers’ Choice ‘Best of the Best’ Award Winner in 2020). With travel bans, restrictions on socialisation,
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and a luxurious prize up for grabs, 516 people entered to win a night away, and 340 completed the bonus question for an additional raffle entry. 857 people visited the page but not all were able to enter as the draw was open only to SA residents. People throughout the world have necessarily been schooled in the facts of COVID-19 (also known as the coronavirus). The trivia quiz sought to test their knowledge of this new virus, as well as other viruses found in our community. As commonly reported by the Hepatitis SA workforce, people often know some information about hepatitis B, hepatitis C and HIV, but get confused over other aspects of these viruses, or mix up the details. This quiz aimed
HEPATITIS SA COMMUNITY NEWS 87 • September 2020
to teach participants the facts, and then test their new knowledge. Feedback about the quiz and prize was exceedingly positive. Overall, participants felt sufficiently taught and tested by the quiz, and were highly motivated to participate by the prize! One participant wrote, “This is a fantastic idea. The information is really easy to digest and the interactive elements are fun!”. K. Hauxwell from Morphett Vale won the prize. In consultation with each prison in South Australia, Hepatitis SA organised World Hepatitis Day Let’s Talk Hep quizzes. In most prisons, posters directed prisoners to call the free Hepatitis SA Helpline, and correctly answer “What date is World Hepatitis Day?” The correct
WORLD HEPATITIS DAY 28 JULY
WORLD HEPATITIS DAY 28 JULY
WORLD HEPATITIS DAY 28 JULY The cure for hepatitis C is now just pills for 8-12 weeks
!
AND WIN
For your chance to win a $50 Gift Card call the Hepatitis SA Helpline on 1800 437 222 between 9am and 5pm weekdays before 7 August 2020 and tell us the cure for hepatitis C.
!
AND WIN
The cure for hepatitis C is now just pills for 8-12 weeks !
AND WIN
Tear off the slip, circle the answer, write your name, and give it to Education Staff for your chance to win a Toiletry Pack:
Call Hepatitis SA (9am-5pm, Monday to Friday) before 31 July and answer the following question for your chance to win a prize:
What date is World Hepatitis Day? Hep SA Prison Helpline: dial #8 (10-minute free call)
How long does it take to be cured of hep C? The winner will be contacted by telephone on 10 August, 2020.
1800 HEP ABC Visit our website www.hepatitissa.asn.au for more Talk Hep and Win! Enter our World Hepatitis Day promotional quiz online for your chance to win an overnight stay at Mount Lofty House with breakfast included.
answer (July 28) was stated on the poster. Once answered correctly, participant’s names were added into a raffle draw. At the end of the competition, names were drawn from the raffles and winners were declared. Prizes included Toblerones, Tim Tams, sunglasses, hats and toiletry packs. The phone calls provided a valuable opportunity to discuss viral hepatitis with participants. These casual conversations
facilitated discussions about an array of topics including transmission risks, testing, the hepatitis C cure, hepatitis B vaccinations, and available services. Let’s Talk Hep quizzes also took place in peer-staffed Clean Needle Programs (CNPs). Clients were encouraged to call the Hepatitis SA Helpline to tell the phoneline worker in how many weeks it takes to be cured of hepatitis C. Callers who correctly answered “8-
CIRCLE THE CORRECT ANSWER
Name:
A) 8–12 weeks B) 12 months
12 weeks” were entered into a raffle to win a $50 Visa Gift Card. A lucky participant from Christie Downs won the prize! Hepatitis SA would like to thank everyone who participated in our 2020 World Hepatitis Day activities, and congratulate all the winners! We would also like to thank everyone who volunteered to hand out flyers for the Let’s Go Viral competition! v
Mount Lofty House
September 2020 • HEPATITIS SA COMMUNITY NEWS 87
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Horses for Courses
Chinese groups find different ways to participate in WHD
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epatitis SA’s World Hepatitis Day activity, Let’s Go Viral, managed to engage with the Chinese community in different ways. While some community groups have valiantly returned to face to face activities, as some TAFE English classes have done (see p2), other groups have remained cautious.
One organisation we contacted was unable to participate because they had still not reactivated their group activities. Another group offered to include information in their newsletter. The Overseas Chinese Association (OCA) lunch group and a TAFE class accepted our invitation to provide information and
The lucky winners of the OCA quiz
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HEPATITIS SA COMMUNITY NEWS 87 • September 2020
facilitate their members’ participation in the Let’s Go Viral quiz. The OCA group participated in the quiz in a socially-distanced arrangement. The 40 participants were part of a weekly “hybrid lunch” activity which combined takeaways and socially distanced sit-downs. To minimise contact, for the peace of mind of participants, the OCA lunch organisers acted as intermediaries for Hepatitis SA. The key lunch organiser received an information briefing from Hepatitis SA staff the day before the activity. She was then provided with printed information and quiz sheets based on the online quiz. On the day itself, lunch participants were divided into smaller groups in separate rooms where the organisers went through the information with them before handing
What is World Hepatitis Day?
World Hepatitis Day (WHD) takes places every year on 28 July, bringing the world together under a single theme to raise awareness of the global burden of viral hepatitis and to influence real change.
them the quiz sheets to complete. Quiz entries were submitted on the spot and a draw made. The first all-correct entry drawn received a hamper. A link to the online quiz was also provided for those who wished to enter the draw for the Mount Lofty House prize offered with the online quiz. In contrast to the OCA’s distanced face-to-face activity, the class of Chinese TAFE students which accepted our offer, chose to do a Let’s Go Viral session during their Zoom lesson.
questions such as: how long hepatitis B immunity lasts after vaccination, where they could get various vaccinations, how and where to get tested, whether Hepatitis SA screening clinics included hepatitis C testing, how children can get catch-up hepatitis B vaccinations and whether it was possible to get HIV from mosquito bites. There were about 20 participants with some couples signing in on a shared account. v Cecilia Lim
Worldwide, 290 million people are living with viral hepatitis, many unaware that they are infected. Without finding the undiagnosed and linking them to care, millions will continue to suffer, and lives will be lost. On World Hepatitis Day, members of the World Hepatitis Alliance call on people from across the world to take action and raise awareness to find the “missing millions”. WHD is a day for the world’s hepatitis community to unite and make our voices heard. It’s a day to celebrate the progress we have made and to meet the current challenges. It’s also an opportunity for us to increase awareness and encourage real political change to jointly facilitate prevention, diagnosis and treatment. v
Hepatitis SA’s viral hepatitis nurse, Bin, was invited to join the class and was given the platform to talk about the different viruses and the diseases they cause. This was followed by a Q&A before the class tested what they had learnt by doing the quiz online. Participants had lots of
The Let’s Go Viral Zoom session in action
September 2020 • HEPATITIS SA COMMUNITY NEWS 87
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Telling Your Story
A Positive Speaker learns about autobiographical storytelling
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s a positive speaker with Hepatitis SA, I relished the opportunity to participate in a two-hour online workshop titled “Telling Your Story”. It was delivered by Jenny Valentish, a well-known journalist and author of the book ‘Woman of Substances,” which investigates the female experience of alcohol and drug use. In this 2-hour online Zoom workshop, participants were interested in expanding their creative skills and increasing their knowledge, while collectively expanding their personal and professional toolkit.
support clients to then tell their own stories. There was also an abundance of content for those considering telling their own personal story, which was my main interest. As a woman now 62 years of age and “nanny” to three grandchildren, I find myself telling them endless stories from my past: memories from my childhood, the valuable lessons learned, powerful quotes and the values my parents instilled in me—all
these contributed towards building positive character. I clearly recall that whenever my father taught me a lesson I usually felt lectured or preached at in a way I resented. As the storyeller to my grandchildren, I am mindful of delivering in a different manner so they can respect and appreciate, as I now do, those valuable lessons and precious times.
Valentish’s presentation focused on building capacity for workers in the Alcohol and other Drugs (AOD) fields who were interested in exploring the therapeutic power of writing stories to Illustration designed by Macrovector/Freepik
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HEPATITIS SA COMMUNITY NEWS 87 • September 2020
Valentish says there are many reasons why we tell stories. We tell them to be heard, to pass on wisdom, to gain perspective and to document information that may be useful later. As a Hepatitis SA Positive Speaker I tell my story to educate others, pass on experience, share knowledge and as a way of making sense of past decisions or choices that were not always the wisest. Taking responsibility for your actions and your past regrets, and having control over how your information is presented or remembered is important. Valentish spoke passionately about “writing from the scar, not the wound”. Most participants related well to this metaphor and this is something I have grappled with before as a speaker. Is it possible to overshare and have too much detail? And how can we be careful not to relive the trauma or shame within the story over and over? I think this is a concept that you need to explore and be comfortable with before you share or write your story or support clients to do the same. This may alter over time as you change, your children grow up and your parents pass on and the lens you view the world through expands. A useful indicator for me is, who is the audience and what are they looking for? Balance this with your vulnerability and generosity of spirit.
There was a list of memory prompts provided as part of the presentation to assist with gathering information for stories which I found very useful. They included ideas such as music, Google Earth, medical and criminal records, other people’s recollections, and priorities or turning points at key times or ages throughout your life. How you structure your story can be done chronologically by utilising a timeline to work from, or you can write about a theme and pick the parts that fit under each anecdote. The term “crusades” was described by Valentish as a way of keeping on track when writing a story. It is a technique to ensure you keep referring to and checking the focus on those key points throughout the writing. Narrative therapy was presented as a useful way for the writer to reflect on the dominant narratives that are used to tell a story. There are comments that can give yourself a hard time, such as, “I am a bad mother”, “I always fail”, “it is all my fault”. The idea is to deconstruct these negative thoughts and instead look for and practice finding your resilience, courage and strength. Other practical advice Valentish spoke about throughout her presentation included the use of humour, writing in the third person, utilising a theme, considering a description in the form of a review, and the use of
metaphors. These are all potential ways of presenting your story. As everyone’s story is unique it is necessary to consider focusing on what works best for you and your style of writing. Other tips suggested were to be sparse, don’t run away with your internal thoughts and lose the reader, recognise that a reader can read between the lines and work it out without excessive explanation, and avoid creating a ledger of bad deeds by repeating yourself and focussing on a story of shame. Valentish advised that there will be many drafts before you are satisfied with the final version, and that it is then a good plan to ask people you trust to read your work and provide feedback. The story’s opening can describe the most exciting moment that hooks in the reader right at the beginning, or that you can leave the cliffhanger until the end, but such decisions will depend on where you want to take the reader. I really enjoyed the workshop and recommend anyone taking up this opportunity, next time it is offered. I gained a real benefit from participating in this training, sharing ideas with others and being inspired by people’s creativity. Thank you to Hepatitis SA for suggesting this workshop to me. And please visit Jenny Valentish’s website at valentish.net for further information. v Kath Leane
September 2020 • HEPATITIS SA COMMUNITY NEWS 87
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David’s Story
When treatment, and everything else, goes wrong
I
have been reading this magazine for a long time, perhaps since its inception! I have always been interested to read other people’s stories of living with hep C. The time has come for me to tell my tale. I have been living with the hep C virus for over 30 years, contracting it some time in the mid-to-late ‘80s. In my late teens and early twenties I discovered that injecting various drugs was a wonderful form of escape. My need to obliterate myself during this period was the result of having been sexually abused in my early teens by the leader of a NSW Church of England Boys Society group.
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HEPATITIS SA COMMUNITY NEWS 87 • September 2020
Photo by Freepik
After hitting rock-bottom at the age of 23, I moved interstate to start afresh. Slowly my life got back on track and my career started taking off. I felt relieved that I had gotten through that dangerous period without dying from an overdose or
contracting HIV. Little did I know there was a danger lurking inside me. During the ‘90s life just got better. I got married, my wife and I bought a house together, and my job was exciting and satisfying. I was still drinking and smoking pot, but in relative moderation. In the late ‘90s my GP got me tested for hep C and the result came back positive. It was crazy to think that this virus had been with me for at least 10 years, as I was asymptomatic. I remember attending an information evening put on by what was then the Hepatitis C Council of SA, and my GP referred me to a liver specialist. At first the specialist appointments were just monitoring my health. However, once interferon became available in the early 2000s, my specialist recommended that I undergo treatment. From my own research, and reading accounts in this magazine, I decided that the risk/ reward of taking interferon was not acceptable to me. Unfortunately, this led to me ceasing to see my specialist, as every session would be a stand-off between his recommendation and my refusal.
Life continued: I got divorced, gave up pot, but kept drinking and occasionally taking recreational drugs. My job was taking me on overseas trips, and I loved it. I met a new partner, fell in love, and we had a son in 2008. As the new decade got underway, I started to hear about the exciting new drugs that were being developed to treat hep C. This eventually led to me having my GP refer me to the RAH liver clinic in 2015. Now that I had a son—I love being a father—I wanted to rid myself of this virus. There was always this feeling that at any time it could make its presence felt, and now I really had something to live for. Amazingly my CT, MRI and fibroscans showed that my liver was in reasonable shape, with only moderate fibrosis. I was one of the first to start on daclatasvir/sofosbuvir direct-acting antivirals in March 2016. My specialist put on me on a 3-month course. I stopped drinking, saw my psychologist regularly to help me keep on track, and tried to be as healthy as possible during the treatment. The blood tests at the end of the 3-month course came back with no virus detected. I
was excited but I knew that we had to wait another three months to see if the treatment had been effective. I remember sitting at my desk at work after having the 3-month follow-up blood test. The phone rang and it was my specialist. He told me I had cleared the virus!! I just sat there for a while taking it in, then I shot off an email to my parents telling them of the good news. While thinking about who to break the news to next (only my immediate family and very close friends were aware of my hep C status), the phone rang again. My specialist said he had read the pathology report in the wrong chronological order. The latest results showed my ALT’s had increased again and the virus had returned. I was shattered. Instead of doing the sensible thing and continuing to see my psychologist or draw on help from those around me, I did what I had always done in times of crisis. My drinking ramped up and I stated taking drugs a little too recreationally. I could not believe I was one of the less than 5% that didn’t respond to treatment. I missed my next appointment with the specialist. However, he rang
September 2020 • HEPATITIS SA COMMUNITY NEWS 87
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me to let me know he was retiring. His last words to me were, “It may be a while until new treatments are available for people who have failed the current directacting antivirals. Keep your eye on what is happening and contact the clinic once you see that new options are available.” I wished him a happy retirement. Fast-forward to 2018 and, following prompting from my parents, I went to my GP and we looked at where treatment options were at. It appeared that I might be eligible for some new treatments in the near future! My GP referred me to the liver clinic, now located in the brand-new RAH. The usual round of tests started. Bloods, ultrasound then fibroscan. It was during the fibroscan, on a brand new machine, that the liver nurse started to look worried. I could tell the results were unexpectedly poor. CT scans and an MRI followed. I knew something was up, and in early December 2018 the locum at the clinic rang me. Indications were that I had cancer and to be eligible for transplant it was best that I stop drinking immediately. I did—my last drink was on 15 December, 2018, at 2pm. The formal diagnosis was
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delivered to me two weeks later. I had hepatocellular carcinoma—liver cancer. What a lovely Christmas present. This news came on top of my partner and I negotiating a separation agreement. Our relationship had been in trouble for some time and it was time to part. My life was falling apart dramatically. I sent an urgent email to my psychologist seeking an appointment. Luckily, she got me in straight away. Since then I have been seeing her regularly and those visits really help hold me together. My diagnosis presented some serious issues. There were various tumours in both sides of my liver; surgery was not an option. There was no chance now of treating my hep C. Use of the hep C drugs would likely cause the cancer to proliferate. It also turned out that I was not eligible for transplant due to the extent of the cancer, which would likely return after transplant. It seemed I was now on death row, having exhausted all my opportunities for appeal. It was now a case of delaying the executioner for as long as possible. In 2019 I underwent two rounds of TACE treatment, where chemo drugs are
HEPATITIS SA COMMUNITY NEWS 87 • September 2020
injected directly into the liver. This helped control and stabilise things. However, the treatment is not very subtle— it’s rather like throwing hand grenades into the liver. It blasts the larger tumours but is ineffective against smaller ones. This year I started on a relatively new anti-cancer drug which hopefully targets the cancer at a molecular level. Results are due soon. On a personal level I am now co-parenting my wonderful son, still working, exercising, going about life and trying to have a positive attitude (the latter being a big challenge). I have come to terms with the fact that my life will be cut short. I am OK with that except where my son comes into the picture. The tears on my keyboard as I write this are for a son who might lose his father way too early. My aim is to try to be there for his eighteenth birthday. Time will tell. I can’t pray to God to help me as it was one of His flock, in one of His institutions, whose perverted, selfish acts eventually led to me being where I am today. Instead I continue to try to find the inner strength to be positive, and writing this article is part of that journey. v David
Calming the C E NEED FOR • Information and support in a confidential, TH D N A 9 -1 ID V CO O T DUE friendly environment CALMING THE LL A , G N CI N TA IS D L SOCIA • Speak to others who have had SPENDED SUtreatment BEENwelcome E friends HAV SSIONS • Partners, family and C SE OTICE: UNTIL FURTHER N 7 222 Please ring 1800 43 ation for hepatitis inform
•
Hutt Street Day Centre: 258 Hutt St, Adelaide SA 5000; call Margery on 0423 782 415 to make an appointment • Information and support friendly environment • WestCare Services: 11/19 19 DVI CO TO E DU • Speak to others Millers Ct, Adelaide SA 5000;who hav R 415 FO Partners, and frien call on ED 0423 family 782 THE• NE DMargery AN , to make an appointment NG SOCIAL DISTANCI •
Now meeting at HACKNEY, ELIZABETH and PORT ADELAIDE Call Us! For information, phone 8362 8443 Free, confidential information See over for dates and support on viral hepatitis:
CLINIC Wonggangga L LIVERTurtpandi AL Aboriginal Primary Health SESSIONS HAVE Care Service (Pt Adelaide meeting ENDEDat HACKN SP SU EN1Now st BE CNP); Wednesday of each and PORT ADE L FURTHE month, amR , 11 UNTI9.30–11.30 ChurchNO St, For Port Adelaide SA : TICE information, phon 5015
•
•
1800 437 222
Calming
Free Fibroscan Clinics
ring See over for
e Pleas Anglicare Elizabeth Mission; 7 22 18001443 17 April, Aug, 132Nov, 9.30am –12 pmpa , 91-93 titisElizabeth he for Way Elizabeth (Bookings via mation for in reception in person, or call 8209 5400) Noarlunga GP Plus; fortnightly, Alexander Kelly Dr, Noarlunga Centre SA 5168 (Bookings via Noarlunga CNP
A Note to Our CNP Clients We are approaching the COVID-19 pandemic with an abundance of caution in line with the recommendations of health experts.
We ask that you arrange for someone else to collect your equipment, if you have • any flu-like symptoms such as fever and cough, or
• We will place equipment on a table for you to pick up: this will maintain social distancing • We will fill out the data sheet
• We recommend that you collect a month’s supply of equipment (in case of any upcoming closures or supply delays)
• recently returned from travel overseas.
• If you can ring ahead, please do so in case any further changes have taken place.
When collecting equipment, we ask that you cooperate with ‘social distancing’ recommendations:
These measures are for YOUR safety as well as ours. Please respect the CNP workers so we can keep this service going!
September 2020 • HEPATITIS SA COMMUNITY NEWS 87
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Farewelling Fred
A pillar of the Hepatitis SA community retires
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red Robertson has been beloved by all at Hepatitis SA for more than 22 years. When he retired at the end of July this year he was my right hand. He was known to the clients of various services as the ‘Chupa Chup Man’ because he handed out Chupa Chups to those who stopped to chat with him about viral hepatitis transmission, testing and treatment over the years. His colleagues know him as an all-round great guy. Whenever anything was asked of him, the word ‘no’ was not in his vocabulary. He was wonderful to work with and his well-earned retirement is a great loss to Hepatitis SA. When asked recently what he liked most about his work, Fred told me that he felt that the people he worked with were like family to him. He commenced as a volunteer at what was then known as the Hepatitis C Council of South Australia in 1998 by working
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on the phone helpline, and his role evolved to Peer Mentor after about 8 years. He supervised a team of peer educators, working with a number of coordinators, during that time. I remember that I first met Fred when I attended workforce development training about blood-borne viruses 17 years ago. I crossed paths with him many times in a professional capacity, as he attended a variety of my workplaces to provide peer education and information to the clients, and I always found him to be the most affable fellow. When I joined Hepatitis SA as the Coordinator of his team 8 years ago he was the most valuable worker that I have ever had the great pleasure to work with. Speaking about his role, Fred explained that he found his work as Peer Educator very rewarding, enjoying the fact that he got to witness the health of clients improve after being cured of hepatitis C and hearing their gratitude for being informed about
HEPATITIS SA COMMUNITY NEWS 87 • September 2020
the latest treatments from someone with a lived experience of hepatitis C. He said that he did his job for the satisfaction that he felt from being a part of the facilitation of the improvement of people’s health. Fred personally lived with hepatitis C for 20 years, first attempting Interferon treatment in 1996 before finally achieving a cure with a second attempt on the old Interferon and Ribavirin combination therapy in the year 2000. He recalls that, for many, “Interferon treatment had some very nasty side effects such as flu-like symptoms, hair loss, depression and anxiety—to name just a few—and the duration was for either 6 or 12 months depending on which genotype of hepatitis C one was infected with.” He said that he was glad when he was eventually able to promote the Direct-Acting Antiviral (DAA) treatments, saying, “It is so great that the new treatments are just one or two tablets per day for just 8 or 12 weeks,” and how he saw the new DAA treatment for hepatitis C improve even
further since 2016. “This cure is easily prescribed, much more effective than the previous treatment, mostly free from side effects. The all-oral treatment has made it so much easier to promote to our clients.” As part of his role as Peer Educator, he would travel to rural areas with an Educator to provide his lived experience of hepatitis C to thousands of prisoners over the years. A conservative estimate of the kilometres he covered while working for Hepatitis SA is around 48,000 kilometres, which equates to having travelled from Adelaide to Scotland (where he was born) then from Scotland to Adelaide and back again. While it is impossible to list
all of his accomplishments over the years, it should be known that he facilitated the distribution of more than 33,000 printed resources to the thousands of people he engaged. Fred was farewelled at a socially distanced gathering of his colleagues, who attended both in person and via Zoom. Gifts from Hepatitis SA and SA’s viral hepatitis nurses included a deed proclaiming him as a Lord with an established title of a one square foot of land in western Scotland. Therefore, it is with wholehearted pleasure that I am able to announce that he may be addressed as Lord Frederick
Robertson when we happily see him return as a volunteer, part of his retirement plan in the near future! v Lisa Carter Coordinator – Hepatitis C Treatment Peer Education & Support Project
September 2020 • HEPATITIS SA COMMUNITY NEWS 87
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Mental Health and Chronic Illness: how to deal with stress and anxiety
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iving with a chronic illness—or with the fear of contracting one— can have serious impacts on mental health. This in turn can further effect how our body copes with existing physical disorders. This is particularly relevant to our current situation: with COVID-19 being a constant presence in our lives. The impact of living with any ongoing health
How chronic stress changes the brain: and what you can do to reverse the damage The Conversation, Melbourne, Sydney, 2020. 4p. Explains how repeated or prolonged stress can impact on physical and mental health and what changes can be incorporated in our lifestyle to ameliorate the impacts. Provides numerous links to supporting evidence in medical journals. bit.ly/conversation_stress
condition, added to the anxiety of living with the fear of contracting the coronavirus, can seriously influence general wellbeing. Continued underlying stress can manifest as sleep disturbances, anger, tiredness, physical pain and a general lowering of physical strength or the ability to cope. There is much evidence that learning how Staying strong and healthy during the coronavirus outbreak Gayaa Dhuwi (Proud Spirit) Australia, 2020. 10 posters, plus webpages. Series of posters containing tips for staying healthy and strong during the coronavirus outbreak. Designed to appeal to wide cross section of Indigenous audiences – remote and urban, and young and old. Each of the numbered tips corresponds to those on the website for more detailed information. bit.ly/32pYldo
stress affects us and how to manage it can have positive effects on physical health. Below are some resources that provide evidence of the effects of stress along with information about how to build resilience, especially when living with chronic illness or its consequences. v Joy Sims
Living with advanced liver disease Hepatitis SA, Adelaide 2013. 22p. Put together after conversations with people who have lived experience. Topics covered include eating difficulties, low/no salt foods, itchy skin, emotional upheaval, confusion and memory loss. bit.ly/hepsa_ald (read only
online: contact admin@hepsa. asn.au for print copies).
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HEPATITIS SA COMMUNITY NEWS 87 • September 2020
Hepatic Encephalopathy (HE) action plan Flinders Medical Centre, Adelaide, 2017. 1p. HE can be one of the symptoms of prolonged liver disease and can cause changes to mood, sleep, memory and concentration. This chart has brief information about what it is, how to recognize it, what may trigger the symptoms, useful hints for how to manage at home, and warning signs for when to seek medical help. bit.ly/fmc_he Chronic physical illness, anxiety and depression Beyondblue, Melbourne, 2018. 7p. Anxiety and depression are common in people with chronic physical illness. The encouraging news is that there are a range of treatments, health professionals and services available to help with anxiety and depression as well as information on what you can do to help yourself. bit.ly/beyondblue_illness
Chronic physical illness, anxiety and depression
Living with or experiencing a chronic illness can result in many adjustments and changes, such as loss of independence and not being able to do all the active things you used to do or usually enjoy. Anxiety and depression are common in people with chronic physical illness. The encouraging news is that there are a range of treatments, health professionals and services available to help with anxiety and depression as well as information on what you can do to help yourself. With careful management, the symptoms of anxiety and depression can be treated along with those of many chronic physical illnesses.
What is a chronic physical illness? A chronic physical illness is an enduring health problem that will not go away – for example diabetes, asthma, arthritis or cancer. Chronic physical illnesses can be managed, but they cannot be cured. People who live with a chronic illness have a greater risk of developing anxiety and/or depression. There are many different types of chronic physical illness and each presents its own challenges. Here is an overview of some of the more common types.
Heart disease Of the different forms of cardiovascular (heart and blood vessel) disease, coronary heart disease is the heart condition most closely linked with depression. www.beyondblue.org.au
Coronary heart disease is a long-term condition that affects around 685,000 Australians1 and is a common cause of death and disability. Depression is a significant risk factor for heart disease.2 Depression is more common among people with heart disease and it affects recovery and increases the risk of further heart-related incidents such as heart attack and sudden death.2 People who do not have good social support networks (such as someone to confide in and opportunities to participate in social activities) are also at greater risk of developing heart disease. Anxiety can also be a risk factor for heart attack and other heart-related events.3
Stroke Stroke is Australia’s second biggest cause of death after coronary heart disease and is a leading cause of disability.4 In 2012, about 50,000 Australians suffered new and recurrent strokes – that is 1,000 strokes every week or one stroke every 10 minutes.5 In 2012 there were over 420,000 people living with the effects of stroke and 30 per cent of these people were under the age of 65.5 A stroke occurs when blood flow to the brain is interrupted. Having a stroke can result in many changes. On a physical level, it can lead to people finding it difficult to move and swallow. Having a stroke can also cause stress, worry and sadness, and affect the way in which people think and feel. There is a strong link between depression, anxiety and stroke.
1300 22 4636
Cancer Cancer is a leading cause of death in Australia – more than 43,200 people are estimated to have died from cancer in 2011. An estimated 128,000 new cases of cancer will be diagnosed in Australia in 2014, with that number set to rise to 150,000 by 2020. Half of Australian men and one in three Australian women will be diagnosed with cancer by the age of 85.6 Cancer is a disease of the body’s cells. Normally cells grow and multiply in a controlled way, however, if something causes a mistake to occur in the cells’ genetic blueprints, this control can be lost. Cancer is the term used to describe collections of these cells, growing and potentially spreading within the body. As cancerous cells can arise from almost any type of tissue cell, cancer actually refers to about 100 different diseases. The most common cancers in Australia (excluding nonmelanoma skin cancer) are prostate, bowel, breast, melanoma and lung cancer, accounting for over 60 per cent of all cancers diagnosed in Australia.7 Men with prostate cancer are nearly twice as likely to develop depression as men in the general community.8 Research shows that anxiety and depression are common among women with breast cancer, and one study found that up to 50 per cent of women with early breast cancer may experience anxiety and/or depression in the year after diagnosis.9
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Grieving the loss of addiction Psych Central, Newburyport, MA, 2019. 4p. Acknowledges that recovering addicts have a lot to grieve: activity that has been central is now something they can never do again. This grief can manifest as anxiety, loneliness, loss of sleep, anger and depression. Written by a psychiatrist specializing in addiction this article gives advice for how to deal with this specific issue. bit.ly/psychcentral_grief Mindfully Aust Broadcasting Corporation, Sydney 2020. 5 sound files. Sydney Swans legend Brett Kirk teams up with the experts in Mindfulness, Smiling Mind, to show how to use mindfulness in different areas of life - with a special focus on relaxation in the time of COVID-19. ab.co/3htiw0c
Looking after your mental wellbeing during the COVID-19 pandemic Australian Red Cross, Canberra 2020. Multiple webpages. Four main sections: Get in the know about how stress can affect you and others during the outbreak; Get together while staying socially distanced; Get a plan to help maintain wellbeing for yourself and others; Get checking on family, friends and people in your community who might need extra care. bit.ly/redcross_covid
Coronavirus: it’s tempting to drink your worries away but there are healthier ways to manage stress and keep your drinking in check Stress symptoms: effects on The Conversation, Melbourne, your body and behaviour Sydney, 2020. 6p. Mayo Clinic, Rochester USA, Describes the negative effects 2019. 2p. From ‘Little B Hero’ ofHep drinking on the immune Outlines the common effects system, sleep and mental of stress on the body, mood health. With advice about and behavior - with ideas of managing drinking patterns how to manage these. Links to and stress. further detailed information bit.ly/conversation_drinking about stress management techniques. mayocl.in/3llFCIH
hepatitissa.asn.au/library September 2020 • HEPATITIS SA COMMUNITY NEWS 87
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COVID-19
MENTAL HEALTH SUPPORT COVID-19 has had a range of mental health impacts on the community through:
Isolation from loved ones and usual supports Changes to normal daily routines Changes to or loss of work Difficult financial situations Anxiety about becoming unwell Our Virtual Support Network is here to help by providing a range of specialist mental health services based in South Australia.
Call 1800 632 753
for mental health support by phone and video. Available 8am to 8pm, every day. See all Virtual Support Network services and other helpful resources at:
sahealth.sa.gov.au/ COVID19MentalHealthSupport https://creativecommons.org/licenses Š Department for Health and Wellbeing, Government of South Australia. All rights reserved. FIS: 20061.5 Printed May 2020.
hepsa.asn.au
hep B Take Action We did
Tested
Vaccinated
Treated
Call Hepatitis SA - 1800 437 222
www.hepsa.asn.au
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HEPATITIS SA COMMUNITY NEWS 87 • September 2020
SA Health has contributed funds towards this program.
Useful Services & Contacts Hepatitis SA Free education sessions, printed information, telephone information and support, referrals, clean needle program and library. (08) 8362 8443 admin@hepatitissa.asn.au www.hepsa.asn.au Hepatitis SA Helpline 1800 437 222 (cost of a local call) Adelaide Dental Hospital A specially funded clinic provides priority dental care for people with hepatitis C with a Health Care Card. Call Hepatitis SA on 1800 437 222 for a referral. beyondblue Mental health information line
Hutt St Centre Showers, laundry facilities, visiting health professionals, recreation activities, education and training, legal aid and assistance services provided to the homeless.
Nunkuwarrin Yunti An Aboriginal-controlled, citybased health service, which also runs a clean needle program.
258 Hutt St, Adelaide SA 5000 (08) 8418 2500
PEACE Multicultural Services HIV and hepatitis education and support for people from nonEnglish speaking backgrounds.
Lifeline National, 24-hour telephone counselling service. 13 11 14 (cost of a local call) www.lifeline.org.au Mental Health Crisis Service 24 hour information and crisis line available to all rural, remote and metropolitan callers. 13 14 65
1300 224 636 www.beyondblue.org.au
MOSAIC Counselling Service For anyone whose life is affected by hepatitis and/or HIV.
Clean Needle Programs in SA For locations visit the Hepatitis SA Hackney office or call the Alcohol and Drug Information Service.
(08) 8223 4566
1300 131 340 Community Access & Services SA Alcohol and drug education; clean needle program for the Vietnamese and other communities. (08) 8447 8821 headspace Mental health issues are common. Find information, support and help at your local headspace centre 1800 650 890 www.headspace.org.au
(08) 8406 1600
(08) 8245 8100 Sex Industry Network Promotes the health, rights and wellbeing of sex workers. (08) 8351 7626 SAMESH South Australia Mobilisation + Empowerment for Sexual Health www.samesh.org.au Youth Health Service Free, confidential health service for youth aged 12 to 25. Youth Helpline: 1300 13 17 19 Parent Helpline: 1300 364 100
Viral Hepatitis Community Nurses Care and assistance, education, streamlined referrals, patient support, work-up for HCV treatment, monitoring and follow-ups. Clients can self-refer. Contact nurses directly for an appointment. Central: Margery - 0423 782 415 margery.milner@sa.gov.au
Debbie - 0401 717 953
North: Bin - 0401 717 971 bin.chen@sa.gov.au
Michelle - 0413 285 476
South: Rosalie - 0466 777 876 rosalie.altus@sa.gov.au
Jeff - 0466 777 873
Specialist Treatment Clinics Subsidised treatment for hepatitis B and C are provided by specialists at the major hospitals. You will need a referral from your GP. However, you can call the hospitals and speak to the nurses to get information about treatment and what you need for your referral. • Flinders Medical Centre Gastroenterology & Hepatology Unit: call 8204 6324 • Queen Elizabeth Hospital: call 8222 6000 and ask to speak a viral hepatitis nurse • Royal Adelaide Hospital Viral Hepatitis Unit: call Anton on 0401 125 361 or 8222 2081 • Lyell McEwin Hospital: call Michelle on 0413 285 476 or Lucy on 0401 717 971
Free Blood Safety + Viral Hepatitis Professional Development via
Book your online education session. All you need is internet access. Sessions cover: ¤ Blood and bodily fluid safety ¤ An overview of hepatitis A, B and C ¤ Transmission risks/myths (including issues like needle-stick injury) ¤ Testing and treatments ¤ Best practice after blood exposure ¤ Standard precautions ¤ Stigma and discrimination ¤ Disclosure ¤ Available Services Cost: Free Duration: 1 hour How to book: Contact education@hepsa.asn.au with your preferred date/time (we will then send you instructions, and a link, to access Zoom) 2
HEPATITIS SA COMMUNITY NEWS 87 • September 2020
