#66 HepSA Community News by Hepatitis SA

Community News

#66 • March 2015

300 LIVER TRANSPLANTS eBox in the Hills • Living Well with Hepatitis

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FREE! Please take one

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21 YEARS!

Hepatitis SA provides free information and education on viral hepatitis, and support to people living with viral hepatitis. Street: Mail: Phone: Fax: Web: Email:

This year, Hepatitis SA (formerly the Hepatitis C Council of SA) will be celebrating its 21st anniversary. Please get in touch with us with yo ur memories of the organisa tion’s early years, or with any ideas of what you’d like to see us do to celebrate our first two de cades. Email us at editor@hepa titissa.asn.au

3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1300 437 222 (08) 8362 8559 www.hepsa.asn.au admin@hepatitissa.asn.au

STAFF Executive Officer Kerry Paterson Administration Megan Collier

Kam Richter

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 1300 437 222 (cost of a local call)

CNP Peer Projects Coordinator Michelle Spudic

About the Cover: The newly decorated eBox and associated art: see p12. Photos by Lisa Carter Kylie Nikkas

Education Coordinator: Tess Opie Educators Claire Hose

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

CNP Peer Projects Officer Carol Holly CNP Peer Educators Andrea Bernadette Justin Margie Mark B Mark T Patrick Penni Sue

Lifeline National, 24-hour telephone counselling service.

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 Non-staff Contributor: Danella Smith

Shannon Wright

Hepatitis B Coordinator Jenny

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 1300 437 222 for a referral. beyondblue

MOSAIC Counselling service For anyone whose life is affected by hepatitis. (08) 8223 4566 Nunkuwarrin Yunti An Aboriginal-controlled, city based health service with clean needle program and liver clinic.

Positive Life SA Services and support for HIV positive people – including treatments information and peer activities. (08) 8293 3700 www.hivsa.org.au SA Sex Industry Network Promotes the health, rights and wellbeing of sex workers. (08) 8351 7626 SAVIVE SAVIVE has closed. Peer run CNPs are now run from Hepatitis SA. Call (08) 8362 8443. Youth Health Service Free, confidential health service for youth aged 12 to 25.

Contents

Hep B & Liver Cancer

Information and Resources Coordinator: Cecilia Lim

Hep A & Frozen Berries

Publications Officer James Morrison

FMC Celebrates 300 Liver Transplants

Living Well with Hepatitis

IT Support Officer Bryan Soh-Lim

Anthea’s Story

Information and Resources Volunteers: Jo Michelle

Lakalinjeri Tumbetin Waal

(08) 8447 8821

Outreach Hepatitis C Peer Education & Support Project Coordinator: Lisa Carter

SA Lived Experience Network

Peer Educator Mentor: Fred Robertson

What’s On

Peer Educators: Dean Karan Penni Will

headspace Mental health issues are common. Find information, support and help at your lcoal headspace centre

Margery - 0423 782 415 margery.milner@health.sa.gov.au Debbie - 0401 717 953 deborah.perks@health.sa.gov.au Trish - 0413 285 476 Lucy - 0401 717 971

In Our Library

1800 650 890 www.headspace.org.au

South

Hepatitis SA Helpline Coordinator: Deborah Warneke-Arnold Hepatitis SA Helpline Volunteers: Debra Karan Louise

Librarian Joy Sims Information and Resources Officer: Rose Magdalene

Mark

BOARD Chair Arieta Papadelos

Vice Chair Bill Gaston

Secretary Lindsay Krassnitzer

Treasurer Howard Jillings

Ordinary Members: Catherine Ferguson Jeff Stewart Kristen Hicks Kerry Paterson (EO)

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Judith Peppard Ratan Gazmere Nicci Parkin

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. Department for Health and Ageing, SA Health has contributed funds towards this program.

Mental health information line 1300 224 636 www.beyondlbue.org.au Clean Needle Programs in SA For locations call the Alcohol and Drug Information Service. 1300 131 340 Community Access & Services SA Alcohol and drug education; clean needle program for the Vietnamese and other communities.

(08) 8406 1600

Youth Helpline: 1300 13 17 19 Parent Helpline: 1300 364 100

P.E.A.C.E. HIV and hepatitis education and support for people from non-English speaking backgrounds.

Vincentian Centre Men’s night shelter run by St Vincent dePaul Society.

(08) 8245 8100

Assistance hotline: 1300 729 202

Viral Hepatitis Community Nurses Care and assistance, education, streamline referrals, patient support, monitoring and follow-ups. Clients can self-refer. Contact nurses directly for an appointment. Central & North

Rosalie - 0466 777 876 rosalie.altus@fmc.sa.gov.au Emma - 0466 777 873

Are you interested in volunteering with Hepatitis SA? Give us a call on 8362 8443 or drop us a line at admin@hepatitissa.asn.au. We rely on volunteers for many of our vital services.

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News

Massive Hepatitis B Impact on Liver Cancer Liver cancer now the fastest-growing cause of cancer death in Australia

B B BBBBBBBBBB BB B A

new report about hepatitis B in Australia was released in February to coincide with World Cancer Day.

cancer death in Australia. According to the Australian Institute of Health and Welfare, it also has one of the lowest survival rates.

For the first time, national datasets are being used to indicate the current level of diagnosis, monitoring and treatment, as well as vaccination rates and outcomes of infection.

In 2014 the Australian Government released its National Hepatitis B Strategy 2014-2017. The Strategy set clear targets for diagnosis, monitoring, treatment, access to care, and immunisation.

The second national report to be produced from the Hepatitis B Mapping project has found that only 57% of people living with hepatitis B have been diagnosed. Alarmingly, only 13% are receiving guidelinebased care.

“The national hepatitis B strategy sets a target to increase the proportion of people living with chronic hepatitis B who are receiving antiviral treatment to 15%. It’s currently 5%.

“There are now over 220,000 Australians living with chronic hepatitis B,” said Associate Professor Benjamin Cowie, one of the report’s authors. “Without appropriate management and treatment, up to a quarter of these people will develop advanced liver disease and/or liver cancer.” Liver cancer is now the fastest-growing cause of

“Increasing uptake of treatment is a means to achieving a significant and sustained reduction in mortality attributable to advanced liver disease and liver cancer.” The report serves as a benchmark for assessing progress with the national priorities. It provides detailed information at a national, state/territory and local area.

The first national hepatitis B mapping report highlighted the geographically uneven distribution of chronic hepatitis B across Australia, outlining the areas of Australia where the need for systematic responses to hepatitis B is greatest. “As the priority populations affected by chronic hepatitis B are subject to broader health disparities, the report allows for awareness and intervention campaigns to be targeted in the most efficient and appropriate ways. Our aim is for it to be used for planning public health and clinical responses which can reverse the rising burden of hepatitis B related liver cancer nationally.” said Associate Professor Cowie. Future updates to the report will be used to monitor and evaluate the progress of Australia’s response to hepatitis B. You can download the report at www.ashm.org.au/default. asp?active_page_id=630.

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News

The Frozen Berry Scare

atients in South Australia, Victoria and Queensland are among those thought to have eaten frozen berries linked to hepatitis A, which has now infected over 20 people nationally. All foodborne disease outbreaks are frightening, but the good news for this one is that hepatitis A is rarely lifethreatening. Hepatitis is inflammation of the liver and can result from a viral infection by one of five hepatitis viruses, which are called hepatitis A, B, C, D and E viruses. The viruses are unrelated to each other but are joined in name because they all replicate in the liver. Hepatitis A and E viruses are probably the least serious, although infection is still harmful. On average, the

blood-borne hepatitis viruses, namely B, C and D are nastier, mainly because all three can evade the immune system and cause life-long infections. This can result in continual liver damage over decades. When someone is infected by the hepatitis A virus they won’t become ill until two to seven weeks later. And they’re infectious around two weeks before and after symptoms first appear. The infected person will usually experience general “hepatitis” symptoms (tired, feeling sick, muscle aches, fever) for up to two weeks before they start to appear yellowish or jaundiced, as a result of liver damage. Jaundice lasts for between one and three weeks.

Infection could lead to the liver being enlarged so the upper right-hand side of the body may feel tender. Even after the jaundice has faded, hepatitis A infection can leave a patient feeling tired, off their food and weak for some weeks, or even months. The mechanism of all viruses is to replicate to enormous numbers so they can be transmitted to new hosts. Hepatitis is no different, and about ten billion hepatitis A viruses are excreted per gram of fæces. That’s why washing your hands is so important once you’re infected. It only takes about 1,000 virus particles to infect someone— you can do the maths. The hepatitis A virus is very common in developing countries, where human fæcal waste often

Photos CC by Sergey Kukota [flickr.com/photos/ks2891] & pda796 [flickr.com/photos/pda796]

A beginner’s guide to hepatitis A

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News NOT JUST FOR TRAVELLERS As well as travellers, it is highly recommended that the following groups consider getting vaccinated against hepatitis A: • persons whose lifestyle puts them at increased risk of hepatitis A and hepatitis B (sexually active men who have sex with men, sex industry workers, persons who inject drugs and inmates of correctional facilities) • persons who attend or work at residential or non-residential facilities for people with developmental disabilities • persons with occupational risks of exposure to both hepatitis A and hepatitis B • persons with chronic liver disease and/or hepatitis C • solid organ transplant liver recipients or solid organ transplant recipients who have chronic liver disease

Photos CC by Sergey Kukota [flickr.com/photos/ks2891] & pda796 [flickr.com/photos/pda796]

For more information, see the Australian Immunisation Handbook: www.health.gov.au/internet/immunise/publishing. nsf/Content/handbook10-4-4

contaminates food and water supplies because sanitation standards are much lower. But in developed countries, such as Australia, the United States and the United Kingdom, infection with hepatitis A is quite rare. Few people encounter the virus unless they travel overseas. This disparity in infection rates between wealthy and poor countries highlights the need for, and should strengthen efforts to, generate clean water supplies. Like most viral infections, adults fare worse than children. A third of infected adults will get sick from hepatitis A, so the disease tends to be nastier in Western countries where mainly adult infections occur. Only hepatitis A virus and hepatitis E virus are

transmitted through the consumption of food and water contaminated with human fæces. Vaccines can protect against hepatitis A and hepatitis B infection, but they don’t cure infection. Since 1988, all Australian babies get hepatitis B vaccinations. But as the hepatitis A virus is rare in developed countries and not life-threatening, vaccination is largely offered only to people travelling to places where the virus is endemic. This makes very good practical sense and it’s cost-effective. You should have the vaccine about a month before you travel because it takes between two and four weeks for full immune protection, which lasts about 25 years. Just like mumps and measles, once you’ve had a hepatitis

A infection or the vaccine, you’ll probably be immune for life. Our main weapon against the hepatitis A virus are immunoglobulins, which are antibodies that bind to the virus to prevent further infection of cells. These need to be administered two weeks after exposure to be effective. Other than this there are no real antiviral treatment options for hepatitis A. People with the virus are clinically supported with management of complications if they arise. Peter White Professor in Microbiology and Molecular Biology at UNSW Australia

Originally published on The Conversation AUTUMN 2015 • HEPATITIS SA COMMUNITY NEWS • 3 at theconversation.com/berry-scare-heres-what-you-need-to-know-about-hepatitis-a-37758 66 - internal pages.indd 3

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News Liver Transplants

FMC: Flinders Milestone Celebration Celebrating 300 liver transplants

he South Australian Liver Transplant Unit, based at Flinders Medical Centre, reached a significant milestone late last year, performing its 300th liver transplant since it opened in 1992. The unit, which serves patients in South Australia and the Northern Territory, now performs about 25 life-saving liver transplants each year, with the aim of significantly improving quality of life for patients with acute and chronic liver disease.

The committed team of doctors, nurses and other staff are on-call 24 hours a day, ready to perform a transplant which can take up to 12 hours. To recognise the unit’s achievements, Tracey Hutton, Media and Communications Officer at the Flinders Medical Centre, interviewed members of the liver transplant team to highlight their important roles in the transplant process.

Dr Darren Mounkley HEPATOLOGIST Dr Mounkley was the first Gastro-Hepatology and Transplant Registrar to work in the SA Liver Transplant Unit when it was established in 1992. As a Hepatologist, his role in the liver transplant process is to ensure the patient is well enough to undergo transplant surgery as well as manage their liver disease before and after surgery. “I am proud to be part of a successful team of doctors, nurses, coordinators, dieticians, social workers and psychiatrists all committed to the well-being of our patients and often going out of their way to provide a good service,” Dr Mounkley said. “It is always the greatest of pleasures to transform the life of a patient with severe liver disease to normal.”

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BY TRACEY HUTTON

News Ann Richardson ASSOCIATE CLINICAL SERVICE COORDINATOR Ann has been the Associate Clinical Service Coordinator in the Liver Transplant Unit in the Operating Theatre Suite since June 1992. Ann’s role involves coordinating the operation and the on-call theatre nurse roster, so the team is prepared for when a donor liver becomes available. “I absolutely love my job and I am so proud to be part of such an amazing team that has so much integrity,” Ann said. “The dedication of this team is truly a rewarding part of this job to me.”

Historical Background

Associate Professor David Roxby HEAD OF TRANSFUSION When the Liver Transplant Unit was first formed, Associate Professor Roxby was the diagnostic laboratory lead and, along with other senior infusions staff, provided intraoperative blood transfusion and laboratory support during the liver transplant operations: a service which continues today. Associate Professor Roxby said surgical techniques had changed since the unit started and there was now less blood required during surgery. “Over the years we have seen a significant decrease in demand for blood on standby from 30–40 units, to 8–10,” Associate Professor Roxby said.

The first successful liver transplant was done in 1963, in Denver in the US, and then in 1968 in the UK, at Cambridge. In Australia the first successful liver transplant was in 1985, in Brisbane. State-based liver transplant units started soon after that— Melbourne in 1988, Adelaide in 1992, and Perth in 1993. There’s now one in each State, with SA covering the NT, and Victoria covering Tasmania. The FMC Liver Transplant Unit is the only one in SA, so patients from other hospitals, like the Royal Adelaide (RAH) and the Queen Elizabeth (QEH), all go there for transplants. Doctors from each of the other hospitals also visit there as part of the unit. There are liver transplant physicians at the QEH and the RAH who can refer patients to the FMC. They attend weekly meetings there, and they also consult in the liver clinic once a week. The Liver Transplant Unit follows patients all the way through the transplant process. There are some who are referred directly for transplants, and some who the unit staff work up through the process for transplants. Then there’s the transplant operation period itself, and after that patients continue to see the Liver Transplant Unit staff for monitoring for the rest of their lives.

(continued over page)

James Morrison

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Liver Transplants

Professor Rob Padbury

Dr Peter Lillie

Dr Andrew Holt

SA LIVER TRANSPLANT UNIT FOUNDER

HEAD OF ANAESTHESIA

CRITICAL CARE SPECIALIST

Hepatobiliary and Liver Transplant Surgeon Professor Padbury was the first Director of the Liver Transplant Unit, having founded the service in 1992. The development of the unit was born out of his ongoing commitment to improving the quality of health care in South Australia. “From humble beginnings in 1992, the South Australian Liver Transplant Unit has grown to become a leader in the field,” Professor Padbury said.

Dr Lillie is the Head of Anaesthesia and was one of the first transplant anaesthetists to work with the liver transplant team. He works with consultants during the anaesthesia process. “I find it such a challenging job in terms of medical management but such a rewarding role with the quality of life these patients have after the surgery,” Dr Lillie said.

“The results from our service are comparable to the best units in the world and I’m certainly very humbled to have had such a strong association with this service.”

Dr Holt is a Critical Care Specialist in the hospital’s Intensive and Critical Care Unit (ICCU) and is responsible for looking after patients following their liver transplant operation. The care of the patient after the surgery is complex and the first 24 hours is critical to monitor the patient and observe any possible complications. Dr Holt played a significant role in the establishment of the Liver Transplant Unit as the ICCU Clinical Lead and part of the original anaesthetic team. “My roles in the establishment of the Liver Transplant Unit have been the most challenging, rewarding and enjoyable of my professional career,” Dr Holt said.

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Dr John Chen

Libby John

Dr Paul Dolan

SA LIVER TRANSPLANT DIRECTOR

LIVER TRANSPLANT COORDINATOR

LIVER TRANSPLANT SURGEON

Dr Chen has been the Liver Transplant Unit Director since 2006. He acknowledged the surgeons involved in the 300th transplant including Dr Mark Brooke-Smith, Dr Eu-Lin Neo, Dr Paul Dolan and others.

Libby has been the Liver Transplant Coordinator since 1996 – a diverse role which involves the coordination of liver transplant services for South Australia and the Northern Territory.

Dr Dolan is one of the surgeons who was involved in the milestone 300th liver transplant.

He said the SA Liver Transplant Unit had one of the best post-transplant patient survival results in the world, in no small part due to the dedication of the liver transplant team.

Libby and her transplant coordinator colleagues are responsible for organising liver transplant referrals and the transplant assessment process, and placing patients on the transplant waiting list (approximately six to 12 months).

“We have the highest liver transplant rate per population in Australia because of our consistent high donor rate and this could be attributed to the work of the intensive care staff in South Australia as well as the work of Donate Life,” he said.

“To be part of the 300th liver transplant makes me feel proud to be part of a fantastic and incredibly dedicated multidisciplinary transplant team who have made a difference to so many peoples’ lives,” Libby said.

His job involves removing the diseased liver and replacing it with a healthy liver from a donor. “It is satisfying to be able to help patients with a chronic illness – unfortunately these patients are left with no other treatment options and the liver transplant is all that’s left to fix their disease,” Dr Dolan said. “We rely heavily on our team, including the highly trained nursing staff.”

Originally published in Southern Health News, December 2014 AUTUMN 2015 • HEPATITIS SA COMMUNITY NEWS •

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Living Well

Living Well with Hepatitis Chronic disease self-management

iving with hepatitis B or C? Would you like to learn to manage your condition to improve the quality of your daily life and long-term health?

In the first of a series of articles, Rose Magdalene looks at the benefits of ‘chronic disease selfmanagement’ for people with hepatitis. Many people with hepatitis B or C experience many years of good health with no symptoms. Others struggle with fatigue, the side-effects of treatments or the longterm impacts on liver health caused by viral hepatitis. Being diagnosed, coming to terms with the possible outcomes of viral hepatitis and keeping track of the monitoring and life-style changes needed to manage your health can all be overwhelming, especially if it comes at a time when you’re experiencing ill health. Although there are some aspects of having viral hepatitis that are unique there are many others that are common to people with chronic ill health. Chronic Disease Self Management is an approach that is being used to help people manage diseases such as diabetes, autoimmune conditions and other chronic illnesses and is having positive impacts not just on long-term health outcomes but on the quality of people’s daily lives. Taking some time to think about how to manage your illness can help to establish or restore a sense of calm to your daily life and may lead to better health outcomes, a greater acceptance of your illness and a renewed sense of self. One of the most helpful and patient centred approaches used in chronic disease selfmanagement is Patricia Fennell’s Four-Phase Model as described in her Chronic Illness Workbook. Bringing together the experience of the many patients she has worked with

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Living Well

REFERRALS & RECOMMENDATIONS Practical help

over the years she describes the disruptive impact of the onset of chronic illness in what she terms the Crisis Phase:

Crisis You start experiencing symptoms and eventually they build up to the point where you can no longer deny that something is wrong. You or those around you might notice that something is the matter or perhaps your symptoms have started to impact on your ability to work, care for your children or other responsibilities. Things come to a crisis point and you seek out help and a diagnosis. If we consider this in the light of people living with hepatitis we could also describe an alternative crisis scenario:

Talk to someone who shares your experience—come to one of our Calming the C support groups (see page 15 for locations and dates). Get more information and support: call the Hepatitis SA Helpline on 1300 437 222. Access free counselling: call MOSAIC Blood Borne Viruses Support Service on 1300 364 277 Make sure you have a supportive doctor: call Hepatitis SA on 8362 8443 or 1300 437 222 for a HepatitisFriendly GP. Resources available from Hepatitis SA • Hepatitis C Guide to Healthy Living • Living with Chirrosis • Living with Advanced Liver Disease Available to borrow from our library • The Chronic Illness Workbook, Patricia Fennell • The Chronic Illness Workbook: the Exercises, Patricia Fennell

You have no symptoms but receive a positive diagnosis for hepatitis B or C. Although (continued over page)

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Living Well

Create a Health Care Tasks List (continued from p9) you feel perfectly well it can be emotionally devastating and keeping track of the tests, appointments and lifestyle changes you need to make while also coming to terms with anxiety about your future health can seem overwhelming and your world seems turned upside down. Fennell then offers a clear and compassionate path to developing a worthwhile life in the face of chronic illness, using a series of exercises to move through the remaining three phases:

Stabilisation You have a diagnosis and have become more familiar with your symptoms, which are more or less stable. Sometimes you feel quite well and you push yourself to go on as you always have, which can cause relapses.

Resolution You begin to realise that you can no longer be the person that you were because of your illness. This can be a devastating realisation involving much soul searching.

Record: • your medications including the dose and when and how to take them • any upcoming tests or appointments and any preparation (such as fasting) required • any lifestyle changes you need to make such as limits on alcohol or dietary changes • any special care tasks that you need to do regularly This is a good way to keep all of the information you need to keep track of available at a glance and can also be helpful to anybody providing you with care or support.

Integration Physically you may be stable or experiencing relapses but you have come to an acceptance of your illness. Although your illness may be a large and important part of your life it is not all consuming and you develop a new sense of self and purpose. Fennell says that “completing the exercises [in the Chronic Illness Workbook] throughout your journey helps you achieve your goal to validate the realities of your experiences, stabilize and structure your life, develop meaning for your experiences,

and ultimately enjoy the whole, complete life that you deserve”. This time I’ve included a basic, practical exercise ‘Creating a healthcare task list’ (see box inset). This is just one of the many exercises included in the Chronic Illness Workbook and in future articles I’ll look at some of the other exercises that explore practical and emotional aspects of chronic illness. If you find this exercise helpful and are interested in doing some of the others before our next magazine the workbook is available to borrow from our library.

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My Story

The Truth at Last Anthea’s story

“ was living in Queensland, and in those days you only had to look funny at a cop and you ended up in prison. It was Joh Bjelke-Petersen’s time, and it seemed as though everyone was bent as. The only drugs I ever used was a bit of dope here and there, but if you got caught with some on you, which I did in a pub in Rockhampton, that was it.” Anthea spent several months in prison in the early 1980s, and it was here that she now believes she contracted hepatitis C. “It was about 15 or 20 years later and I was feeling really sick, all the time, and I’d been to see several doctors about it. Finally one GP—I haven’t got much else good to say for him, but at least he did this right—ordered some blood tests that showed that I had hepatitis C. “I didn’t even really know what hepatitis C was, and when the results came back the GP told me I must gave got it in prison. I hadn’t even told him I’d been to prison, but it was on my medical record somehow. At first I thought he meant I’d contracted hep C from prison food, like it was hepatitis A. And he said no, he meant I must have been shooting up with shared needles.” Despite her GP’s initial disbelief, Anthea had never injected drugs in her life, in or out of prison. “There was a bit of that

going on in there, but I wasn’t interested and even if I’d wanted to I couldn’t have afforded any heroin anyway!” After excluding injecting drug use, the GP told Anthea she must have contracted hepatitis C sexually. “I didn’t know any better, so I assumed he was right. And I felt awful, thinking hep C must be like AIDS, and that I was going to die. And he gave me a couple of photocopied pamphlets which didn’t have much useful info in them, and sent me on my way.”

tattoos for people. She wasn’t crash-hot at it, to be honest, but she could do simple shapes like A few years later, and still feeling hearts and initials not too bad, and a heart was what I got. And pretty sick, Anthea was living of course none of the gear she in Adelaide. She’d moved to used was new or clean. So this Salisbury to help her father, mystery of where I got the virus who had dementia. “Some days in the first place was solved. I’d read to him from the paper, I was surprised how much because he always used to like knowing that helped me.” that—on good days he’d read it himself, pretty much cover to Through further calls to Hepatitis cover, and on bad days I’d read SA’s support and information to him. line, Anthea got the contact details of a hep C-friendly “One day I flip open the paper GP, and from that doctor she and there’s this little ad that was able to get onto antiviral says hepatitis C isn’t sexually transmitted, and there’s a phone treatment. number to call. So I ring up and Anthea is now studying to talk to someone at Hepatitis SA, become a nurse, with the and for the first time I’m getting ultimate ambition of working in some real info! a liver care clinic. “People need “I found out that hepatitis C isn’t more information when they’re sick, and I want to help give it to really a sexually transmitted them.” infection at all, and I also find out about other ways of You can call the Hepatitis SA contracting it. For the first time Helpline on 1300 437 222. things made sense. Wile I was James Morrison in prison this other girl did a few AUTUMN 2015 • HEPATITIS SA COMMUNITY NEWS •

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H@ e aling in the Hills At Lakalinjeri Tumbetin Waal

bout an hour from Adelaide, away from the main freeway, along a quiet dirt road there is a special place in the Hills. It is here, at Lakalinjeri Tumbetin Waal, that the Aboriginal Sobriety Group is able to provide non-medical drug and alcohol residential rehabilitation and holistic support for the Aboriginal men who stay there. Lakalinjeri Tumbetin Waal means ‘clan, family, and community’—this place is a healing place. It is known as ‘LTW’ for short, and there is an old sign

there that reminds us that it is also known as ‘Frahns Farm’. ASG workers, in partnership with other agencies, are able to assist the men towards their recovery. The program provides opportunities to explore the underlying grief which is often a factor with issues of substance misuse, as well as teaching and learning that encompasses traditional cultural methods that are considerate of differing clans’ beliefs and rituals. This allows for all communities to share an experience of healing.

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Outreach Peer Education

Our Outreach Peer Educators from Hepatitis SA take this road each fortnight to visit the men for a yarn, and together they do arts activities, while providing information, support and referrals about hepatitis C. As a recent arts activity the men painted an ‘eBox’ which Hepatitis SA has provided. The eBox is a concept that will allow all residents to access information about hepatitis C at any time. The computer within the art piece has software that facilitates the delivery of electronic resources such as slides, videos, interactive activities, music and electronic publications that we will update regularly. We hope that the eBox will be a long-lasting information vendor that will be utilised by all on their journey through LTW. It will enable the residents to access up-to-date information about viral hepatitis between visits from our Outreach workers. Lisa Carter Co-ordinator Outreach Hepatitis C Peer Education & Support Project

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Regional Treatment

South Australian Lived Experience Network

he South Australian Lived Experience Network (SALEN) has been established and meets quarterly. If you are a Peer Educator, Mentor, Peer Support Worker, Positive Speaker or anyone else actively drawing from your own lived experience in your work role (paid or volunteer) you are invited to join us at this forum. The value of people who are able to share their knowledge of what it is like to live with a particular health or medical condition, or has a firsthand account of what it is like to be a part of a minority or oppressed group, or has lived through a particular trauma or life experience, is becoming more widely recognised throughout the world. There are a lot of people working in South Australia, either paid or volunteer, who are utilising, or specifically

employed because of, their specific life experience. This includes workers in the community sector who support others with issues relating to mental health, hepatitis, injecting drug use, sex work, gambling and many other areas. SALEN meetings provide professional development opportunities and allow for you to hear from other lived experience workers, as well as share knowledge and develop/ refresh new and existing skills. Participants are also able to shape future topics for learning and discussion—it is your forum. Each forum is participatory and includes group work (such as case studies or scenarios) and peer speakers sharing their experiences of utilising lived experience in their work. Feedback has been extremely positive: participants tell us that they

have found the forums to be good opportunities to share information and experiences. Hepatitis SA collaborated with Mental Illness Fellowship South Australia (MIFSA) for the initial consultation and first forum, but has now taken on the SALEN co-ordination. The meetings are facilitated with in-kind support by the agencies involved as this network is not currently funded. SALEN recognises this work requires a special skill set that may not be fully understood in other fora, and the great importance of a network for lived experience workers. If this appeals to you, our next SALEN meeting is scheduled for June. Please join us by emailing carol@hepsa.asn.au or fred@hepsa.asn.au, or by calling us on 8362 8443 for more information.

Lisa Carter

• HEPATITIS SA COMMUNITY NEWS • AUTUMN 2015

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What’s On? Hepatitis C peer educators are also available to provide information and support to clients at the following services: Warinilla Outpatients Hepatitis C Treatment Clinic 92 Osmond Tce, Norwood Tuesdays monthly 2–4pm Upcoming dates: April 4 May 5 June 6 & 30 DASSA Southern Service 82 Beach Rd, Christies Beach Monday monthly 10am–1pm Upcoming dates: March 30 April 27 May 25 June 22 DASSA Northern Service 22 Langford Dr, Elizabeth Thursday fortnightly 10am–12pm Upcoming dates: March 19 April 2, 16 &30 Hutt Street Centre 258 Hutt St, Adelaide Wednesday weekly 10am–12.30pm WestCare Centre 17 Millers Court (off Wright St), Adelaide Wednesday weekly 10.30am–12.30pm

AUTUMN 2015 • HEPATITIS SA COMMUNITY NEWS •

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In Our Library

Resources to make life easier The library has a collection of books and factsheets that can help to make life easier – whether it’s managing symptoms, eating well, or just generally dealing with the stresses of living with an illness. The following resources are available for loan from the library, free of charge to members... feel free to come and browse anytime. Action for happiness: putting the science of well-being into practice Young Foundation (Headspace), London

High protein, high energy diet: for advanced liver disease Gastroenterological Society of Australia & Digestive Health Foundation, Sydney, 2012 Clear information, with charts and plans, to maintain a suitable diet for those with advanced liver disease Questions to ask your Doctor Cancer Council of NSW, Sydney, rev. ed. 2014 A one-page factsheet for people diagnosed with liver cancer. Available in multiple languages

A simple and practical workbook based on the latest scientific research relating to happiness

Drug use, chronic hep C and stress Australian Injecting & Illicit Drug Users League, Canberra, 2013 Addresses the unique stresses in the lives of people who inject drugs, with advice from a GP and a Naturopath Easyfeast: healthy homecooking made easy Community Foodies & Community Food SA, Adelaide, 2012 Recipes from the Easyfeast project aiming to provide healthy, nutritious, tasty and economical meals for people on a low income.

Check out the catalogue at hepsa.asn.au/library for a range of hard-copy or online materials. Our librarian, Joy, works on Wednesdays so if you need any specific information just ring or drop in. Otherwise there are lots of other friendly staff members who can help you to find and borrow resources. 16

• HEPATITIS SA COMMUNITY NEWS • AUTUMN 2015

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21 YEARS!

Hepatitis SA provides free information and education on viral hepatitis, and support to people living with viral hepatitis. Street: Mail: Phone: Fax: Web: Email:

3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1300 437 222 (08) 8362 8559 www.hepsa.asn.au admin@hepatitissa.asn.au

STAFF Executive Officer Kerry Paterson Administration Megan Collier

Kam Richter

CNP Peer Projects Coordinator Michelle Spudic

About the Cover: The newly decorated eBox and associated art: see p12. Photos by Lisa Carter Kylie Nikkas

Education Coordinator: Tess Opie Educators Claire Hose

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

CNP Peer Projects Officer Carol Holly CNP Peer Educators Andrea Bernadette Justin Margie Mark B Mark T Patrick Penni Sue

Lifeline National, 24-hour telephone counselling service.

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 Non-staff Contributor: Danella Smith

Shannon Wright

Hepatitis B Coordinator Jenny

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 1300 437 222 for a referral. beyondblue

Contents

Hep B & Liver Cancer

Information and Resources Coordinator: Cecilia Lim

Hep A & Frozen Berries

Publications Officer James Morrison

FMC Celebrates 300 Liver Transplants

Living Well with Hepatitis

IT Support Officer Bryan Soh-Lim

Anthea’s Story

Information and Resources Volunteers: Jo Michelle

Lakalinjeri Tumbetin Waal

(08) 8447 8821

Outreach Hepatitis C Peer Education & Support Project Coordinator: Lisa Carter

SA Lived Experience Network

Peer Educator Mentor: Fred Robertson

What’s On

Peer Educators: Dean Karan Penni Will

headspace Mental health issues are common. Find information, support and help at your lcoal headspace centre

Margery - 0423 782 415 margery.milner@health.sa.gov.au Debbie - 0401 717 953 deborah.perks@health.sa.gov.au Trish - 0413 285 476 Lucy - 0401 717 971

In Our Library

1800 650 890 www.headspace.org.au

South

Hepatitis SA Helpline Coordinator: Deborah Warneke-Arnold Hepatitis SA Helpline Volunteers: Debra Karan Louise

Librarian Joy Sims Information and Resources Officer: Rose Magdalene

Mark

BOARD Chair Arieta Papadelos

Vice Chair Bill Gaston

Secretary Lindsay Krassnitzer

Treasurer Howard Jillings

Ordinary Members: Catherine Ferguson Jeff Stewart Kristen Hicks Kerry Paterson (EO)

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Judith Peppard Ratan Gazmere Nicci Parkin

(08) 8406 1600

Youth Helpline: 1300 13 17 19 Parent Helpline: 1300 364 100

P.E.A.C.E. HIV and hepatitis education and support for people from non-English speaking backgrounds.

Vincentian Centre Men’s night shelter run by St Vincent dePaul Society.

(08) 8245 8100

Assistance hotline: 1300 729 202

Rosalie - 0466 777 876 rosalie.altus@fmc.sa.gov.au Emma - 0466 777 873

Are you interested in volunteering with Hepatitis SA? Give us a call on 8362 8443 or drop us a line at admin@hepatitissa.asn.au. We rely on volunteers for many of our vital services.

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Community News

#66 • Autumn 2015

300 LIVER TRANSPLANTS eBox in the Hills • Living Well with Hepatitis

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FREE! Please take one

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