#33 Hep C Community News by Hepatitis SA

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Hepatitis

Community News Winter 2006

The Hepatitis C Council of South Australia provides information, education and support to the hepatitis C community and those at risk. Street: Mail: Phone: Freecall: Fax: Web: Email:

3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 (08) 8362 8443 1800 021 133 (08) 8362 8559 www.hepccouncilsa.asn.au admin@hepccouncilsa.asn.au

STAFF Acting Manager: Kerry Paterson Senior Administration Officer: Lynn Newman Administration Officer: Megan Collier Info and Support Line Coordinator: Deborah Warneke-Arnold Info and Support Line Volunteers: Fred Steve Lyn Will Mark Judy Anne Debra Janette Annette Michele Wendy Education Coordinator/Rural Education: Leslie Wightman Development Coordinator: Danny Gallant Metropolitan Educator (Community Programs): Sharon Drage Metropolitan Educator: Nicci Parkin Getting It Together Program: Michelle Morrison Information and Resource Coordinator: Cecilia Lim Resource Volunteers: Claire Maggie Thuy Lyn Phil Publications Officer: James Morrison Librarian: Joy Sims

BOARD Chairperson: Arieta Papadelos Vice Chairperson: Catherine Ferguson Secretary: Peter Underwood Treasurer: Barbara Williams Senior Staff Representative: Danny Gallant Ordinary Members: Leslie Dunbar Enaam Oudih Carol Holly Nick Taylor Anthea Krieg

Editorial

Useful Contacts & Community Links

This year’s National Hep C Awareness Week (1-6 October ) urges the community to “Take Control” of Hepatitis C. Besides the obvious call to hep C positive people to be in charge of their own health management, “Take Control” also sends a message to the general community to take steps to control the much-neglected hepatitis C epidemic.

Hepatitis C Council of SA Provides information, education, support to the hepatitis C community and those at risk of infection. The Council provides information and education sessions, as well as free written information. The Calming the C Support Group is also run by the Council.

This issue of the Hepatitis C Community News looks at some of the tools available to people with hepatitis C to improve their health situation: advocacy, meditation, library resources, web resources and an online forum. As sharing stories can be a very useful way of breaking down the isolation often felt by people with hepatitis C, this can be a therapeutic and enjoyable way of managing hepatitis C. HCCSA is currently gathering stories for the Works Well Project (see page 5), which will build a collection of truths, tricks and tips for being in control of hep C; a collection everyone can make use of. The Australian Hepatitis Council (AHC), in a similar vein, has a competition—Sharing Your Stories—for people with hepatitis C across Australia (see page 3). We also look at how the P.E.A.C.E. program supports its clients and works with them to support their own community (see page 6). Nunkuwarrin Yunti and the Flinders Medical Centre have launched a liver clinic which runs every Thursday morning, looking at all types of health issues that affect the liver, as well as making hepatitis C treatment more accessible (see page 11). As part of National Hepatitis C Awareness Week 2006, the Australian Hepatitis Council will be hosting a hypothetical in Sydney on hepatitis C in prisons. Entitled Hepatitis C and Australian Prisons – A Terminal Sentence?, the event will be facilitated by the ABC’s Dr Norman Swan (see page 7). The Hepatitis C Council of SA and our partner organisations will also be organising events and displays. More information on the South Australian Hep C Awareness Week program can be found on page 1, opposite. We invite all our readers to support the Council by participating in National Hepatitis C Awareness Week 2006.

Contents

Call the Council’s Hep C Info and Support Line for information on (08) 8362 8443 or, for rural callers, 1800 02 11 33 (freecall). MOSAIC & P.E.A.C.E. Relationships Australia (SA) provides support, education, information and referrals for people affected by hepatitis C through the MOSAIC and P.E.A.C.E. services. MOSAIC is for anyone whose life is affected by hepatitis C, and P.E.A.C.E. is for people from culturally and linguistically diverse backgrounds. (08) 8223 4566 Nunkuwarrin Yunti A health service for Aboriginal and Torres Strait Islander people. (08) 8223 5011

Clean Needle Programs To find out about programs operating in South Australia, contact the Alcohol and Drug Information Service. 1300 131 340 Partners of Prisoners (POP) Facilitates access to and delivery of relevant support services and programs which promote the health, wellbeing and family life of partners of prisoners who are at risk of hepatitis C, HIV/AIDS or are people living with hepatitis C or HIV. (08) 8210 0809 SAVIVE Provides peer-based support, information and education for drug users, and is a Clean Needle Program outlet. (08) 8334 169 Hepatitis Helpline This hotline operated by Drug and Alcohol Services South Australia provides 24-hour information, referral and support. Freecall: 1800 621 780

Other Features 10 Nunkuwarrin Yunti’s New Liver Clinic 11 HeplinkSA Forum 2 12 Speaking Positively Disclaimer: Views expressed in this newsletter are not necessarily those of the Hepatitis C Council of South Australia Inc. 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 Council members and the general public. This publication does not use Comic Sans. Visit bancomicsans.com to join the fight.

Aboriginal Drug and Alcohol Council of SA (ADAC) Ensures the development of effective programs to reduce harm related to substance misuse in Aboriginal communities. (08) 8362 0395 AIDS Council of SA (ACSA) Aims to improve the health and wellbeing of gay/homosexually active men, people who inject drugs, sex workers and people living with HIV/AIDS in order to contribute to the overall wellbeing of the community. (08) 8334 1611 SA Sex Industry Network (SA-SIN) Promotes the health, rights and wellbeing of sex workers. (08) 8334 1666

Are you interested in volunteering with the Hepatitis C Council of SA? Please give us a call on (08) 8362 8443 or drop us a line at admin@hepccouncilsa.asn.au and let us know. We rely on volunteers for many of our vital services. The Council offers the choice of two meeting rooms, both of which are suitable for workshops, presentations, formal and informal meetings. The ground floor has disabled access and can accommodate up to 20 people. Upstairs is a spacious area suitable for up to 30 participants.

Cover: Sketch of 3 Hackney Road by Nicole Carey Take Control: Self-Management 1 Hepatitis C Awareness Week 2006 2 Will’s Treatment Story 4 Meditation for Self-Management 5 Works Well 6 Helping Adelaide’s African-Australians 8 The Health & Community Services Complaints Commissioner 9 Self-Management Books

The Adelaide Dental Hospital has a specially-funded clinic where people with hepatitis C who also have a Health Care Card can recieve priority dental care. Call the Hepatitis C Council for a referral on (08) 8362 8443.

Meeting Room Hire at the

Both rooms have modern, self-contained kitchen and bathroom facilities. The upstairs room has an electronic whiteboard and the Council offers the use of an overhead projector, data projector, TV and video (subject to availability). Fees for room hire are $33 per hour (inc GST). Bookings over three hours will be charged at $110 (inc GST). Fees will be directed into programs for people living with or affected by hepatitis C. Organisations that receive funding through the HHPP of the Department of Health will be exempt from payment.

Community members affected by hepatitis C are encouraged to use the rooms at no cost.

Contact us at 3 Hackney Road, Hackney PO Box 782, Kent Town SA 5071 Phone: (08) 8362 8443 Fax: (08) 8362 8559 Web: www.hepccouncilsa.asn.au Email: admin@hepccouncilsa.asn.au

Hepatitis C Community News Winter 2006 â&#x20AC;˘

Will’s Treatment Story My name is Will. I’m a single man, 59 years old and living on my own. It was 1 October 2003 when I had respiratory problems and heart failure. I had been admitted to the Queen Elizabeth Hospital and was not very well at all. On top of all this, the doctors gave me the diagnosis that I was hep C positive. Well, this stunned me!

bit sick for a couple of days. The third week, it hit me, for six out of seven days, bang! Flat on my back! Couldn’t eat, couldn’t move, couldn’t do a damn thing! It was 1 August now, and I’d just turned 59. And I felt like shit! I thought I’d been given a death sentence. I was so scared, not being able to eat. I had to seek

juice, Sustagen, protein powder and vitamins. I really think that the combination of vitamins and supplements have assisted me greatly before and throughout treatment. Some eight months before starting treatment, I met a doctor through the Hepatitis C Council. He advised me that taking strong antioxidants such as selenium and

I had been feeling sick, with no energy, for five years or more, and getting worse by the month. The doctor, who had been my GP for the last decade, didn’t have a clue as to what was wrong, and had failed to diagnose the hep C virus, though I had been complaining that I was not well for years. Over this time, I had become a very heavy drinker (a bottle of whisky a day, sometimes more). This wasn’t doing my liver any good! But I was drinking to block out the sickness and pain of an illness that I didn’t know I had. I was losing weight, my appetite had gone, and I was depressed. This was before going on any treatment. I was in denial about the depression, so I took myself off the antidepressants. At this stage I changed doctors. I found one who was hep C-friendly, and he’s been able to give me great assistance. I followed through and had a biopsy: level 3 fibrosis. I decided straight away that I wanted something done about it. I then said, “I’d like the treatment”. A friend of mine came with me for support. I saw a specialist at the QEH, and told him I didn’t want to wait three months for appointments or treatment. He was quite good; he organised an ultrasound. I have heart and respiratory problems so they had to check me out before I went onto the combo treatment of pegylated interferon and ribavirin. The first week that I was on treatment, nothing much seemed to happen. This didn’t seem bad at all! The second week, I felt a Hepatitis C Community News • Winter 2006

the help of a dietician to look at alternative ways of getting sustenance. My body no longer felt like mine. It felt alien. Food didn’t taste the same, if I could eat at all. My illfitting false teeth that were rubbing on ulcerated gums, and the treatment gave me a sore throat. I was unable to look after myself. I had to seek help from Meals on Wheels, and when I couldn’t eat them, I had to substitute fruit

vitamin E in combination with fish oil and B-complex vitamins may help me. To this I added milk thistle, evening primrose oil and alpha-lipoec acid. I’ve kept taking these throughout my treatment, and I believe it has helped fight the side effects. It has also helped me greatly in beating this virus. At the beginning of treatment I had a viral load of 500,000. At three months, I had been waiting to find out whether I had a two-log drop. If so, I could stay on treatment.

Otherwise, I would be taken off the treatment, which I didn’t want to happen! It frightened me to think it would, and through no fault of my own. However, I had my two-log drop—I got it well in! I was down to a viral load of 1,600, so treatment continued. At seven months I had an extra blood test (the PCR test) and the virus was undetectable. Great news! And although still suffering the side effects of the drugs, I still had the will to go on with the treatment. I was positive when I entered into the treatment and I was going to finish, no matter what! I say this because all the way through, I’ve had to fight three major things brought on by the treatment. The first was similar to chronic fatigue syndrome: not being able to get up in the morning, not being able to do anything. The second was depression. Depressed from

the side effects of the treatment, I would sit there for two or three hours in the evening wondering whether to inject myself with the Interferon, or whether to just throw it away and give up. I’ve done that several times through treatment, and it was scary. Just the same, I feel that it’s all been worth it, judging by my health and the blood results. The third problem, the greatest of all, is the loss of appetite. Nausea, ulcers in my mouth and throat, illfitting false teeth so I couldn’t chew my food (even when I thought I wanted to eat), the feeling that food was going to come back up even if I could eat. It could take three hours to eat a bowl of cereal! I’ve taken tissue salts (recommended by a naturopath) to try and alleviate all this. I’ve taken medication (prescribed by my doctor) too, but there’s no relief. I didn’t know what to do.

I have genotype 1, which means 48 weeks of treatment. Right now it’s week 40, and so far it looks really good. My ALTs are normal and my blood results are great. So far, the treatment seems successful. I attribute this to having a good support system, my specialist (Professor Grove), my GP (Dr Peter Foenander), the interferon nurse at the QEH (Margery Milner), my naturopath (Susan McDonald), and Dr William Donahue, as well as all the support and information that I’ve gained through the Hepatitis C Council. I’d like to thank my friends, and I wish to thank Mosaic Counselling (which I have needed through some of my treatment) and the ‘Calming the C’ support group. To all the people who have stood by me and given assistance— without you I don’t think I could have made it through this far!

Share Your Hints to Win As part of National Hepatitis C Awareness Week 2006 the Australian Hepatitis Council is inviting people living with hepatitis C to share their hints for managing work, family and relationships with their health. National Hepatitis C Awareness Week will be held 1-6 October and will be focussed on increasing awareness of effective selfmanagement of hepatitis C. Self-management is the way you manage your life and lifestyle to maintain your health. There are many elements of effective selfmanagement and different things work for different people. The way you manage work/life balance, relationships and family can impact your health. The Australian Hepatitis Council is producing a website full of information about self-management and hepatitis C for National Hepatitis C Awareness Week 2006. Up to five contributions that discuss

balancing relationships, family and/or work pressures while living with hepatitis C will be published on this website. All material can be published anonymously on request. Those contributions published on the website will receive a ‘pamper pack’. How do I get involved? For your chance to win 1 of 5 ‘pamper packs’ please write a submission discussing the challenges and successes you have encountered managing work/life balance, relationships, and/or family while living with hepatitis C. Submissions should be no longer than 350 words and the Australian Hepatitis Council has the right to publish submissions on the website in part or in full.

the Australian Hepatitis Council to be received by COB Friday 8th September. Please note in your submission if you would like your submission to be published anonymously if it is selected. Send your entries to: ahcinfo@hepatitisaustralia.com or PO Box 716, Woden ACT 2606 Need further information? Call Damien at the Australian Hepatitis Council on (02) 6232 4257 or send an email to ahcinfo@hepatitisaustralia.com Australian Hepatitis Council PO Box 716, Woden ACT 2612 Ph: (02) 6232 4257 Fax: (02) 6232 4318

Email or post your submission, your name, your postal address and contact telephone number to Hepatitis C Community News Winter 2006 •

Meditation for Self-Management Insight Meditation as a Treatment to Prevent Relapse in Depression In the last four years psychologists from a number of different countries have been experimenting with a new treatment to help prevent relapse in people who have recently recovered from depression – it’s called Mindfulness Based Cognitive Therapy or MBCT (Segal, Williams & Teasdale, 2002). The therapy consists of teaching people to meditate using techniques identical to those used in Vipassana Meditation (also known as Insight or Mindfulness Meditation) This particular form of meditation practice encourages the meditator to view his or her stream of thoughts as a series of unrelated mental events or chatter. These should be acknowledged by the mind but not given any importance. The aim of Vipassana is to train the mind by focusing on the breath so that the meditator can eventually (we are talking about years) relinquish this chatter and replace it with some other form of conscious mind which is beyond description (Clements, 2006). The aims of MBCT are much more easily described. MBCT uses the techniques of Vipassana with the addition of some minor components taken from mainstream cognitive/behavioural therapy—I assure you they are minor—to break the cycle of ruminating thoughts in depression. MBCT also comes with a different view of the role of these ruminating thoughts. Unlike in mainstream psychology and psychiatry, ruminations are seen as the cause rather than a symptom of depression. MBCT courses consist of one two-hour session once a week for eight weeks. They use CDs for homework which will cost you $100 via the internet - you will need a credit card, or a friend with one. You can do MBCT in Adelaide courtesy of a joint project of the Royal Adelaide Hospital and Adelaide University. Apart from Hepatitis C Community News • Winter 2006

the cost of the CDs, the course is free, and is run by a psychiatrist and a psychologist. You will need to meet clinical criteria, that is have recently experienced a depressive episode. They may let you do it even if you are currently depressed; it will depend on their assessment .You can phone them on 8222 8100 for more details. For the more spiritually minded, the ascetics and those who are interested in learning to meditate but don’t fit the criteria to do the MBCT course - you can do a 10 day (that is the absolute minimum) silent meditation retreat with the South Australian Vipassana Association ph. 8278 8278. They do about three or four of these retreats a year, at Normanville. They are not for the faint hearted and probably not a good idea if you are depressed. Cost is by donation - remember that they are a not-for-profit/voluntary organisation. Apart from the above there are a number of small groups of people in and around Adelaide who

practice Vipassana meditation and who sometimes have visiting meditation teachers who conduct silent retreats, these are usually for shorter periods e.g. six days and are less demanding with better food. Most of these you can find on the internet under Vipassana. Cost, if you include the donation

for the teacher or guru, which is paid separately, you can reckon on about a $100 a day. Concessions are usually available and if you are genuinely poor they may reduce the price to something you can afford. Finally, for the loners and those who want no truck with gurus or psychologists but still want to learn to meditate, may I recommend Mindfulness in Plain English by Benhepola Gunarata (which costs around $35). Although he is a Sri Lankan Buddhist monk the book is remarkably free of doctrine. It is thorough and well written and should not offend the sensibility of anyone. Vipassana is taught in prisons all over the world. If you are in prison ask someone to make contact with the Vipassana Association on your behalf or phone them yourself—if you can—to enquire if they can send someone to come and teach you. It will be free. Leif Blackstream

References: Instinct for Freedom: New World Library, 2006, by Segal ZV, Williams JMG, & Teasdale JD. Mindfulness-Based Cognitive Therapy For Depression: A New Approach to Preventing Relapse: The Guildford Press, 2004.

Works Well A collection of truths, tricks and tips for being in control Hepatitis C affects us all differently. For some of us, for some of the time, the symptoms of the virus, or the treatment, or the attitudes of people towards us, can make us feel like we are out of control. As we manage the effects of hepatitis C, we become experts in our lives for what works for us, what we need to regain and maintain that control. This year, at the beginning of October, we celebrate Hepatitis C Awareness Week, and this

year we are looking closely at control. The HCCSA are looking for people to contribute their selfmanagement tips and tricks to be part of a multimedia collection called Works Well to be launched in Awareness Week. After the launch, the collection will be used to continue to educate, inform, inspire and illuminate via our website, our education program and our information resources. If you have hepatitis C, or have recently cleared the virus, and you would like to be part of this project, here’s what to do:

1. Think about it… What aspects of your life do you notice hepatitis C affecting? • Your physical well-being • Your mental well-being • Your social interactions • Your relationships with your partner, children and family • Your work performance and relationships • Your political views • Your attitude to life and yourself • Your plans and dreams for the future

What do you do to counteract the negative effects? What are the steps you take to regain the balance of control? What are the strategies that work best for you? What are the positives about hepatitis C? What makes you strong when you really need it? 2. Write about it… Write down your ideas. They don’t have to be brilliant, revolutionary,

or even sensible, but whatever is true for you. What you write can be as brief or as expansive as you like. Keep it confidential! Don’t identify yourself or others by using real names or specific references to real places or events 3. Contact Nicci to record it…. Nicci will discuss your options for recording you speaking your piece. We have portable sound-recording equipment that we can bring to

you, or you can come in to the HCCSA and record it here. If you do not want to record yourself speaking it, just submit your written piece and we will get someone else to speak it for you. Images will be added to your recording later that reflect what you have said. We have a bank of ‘general’ images that we can use, or, you can supply the images yourself—but remember, nothing that identifies you or others.

CONTACTS Phone 8362 8443 (metro) or 1800 021 133 (Freecall for regional SA) Email nicci@hepccouncil.asn.au Mail: PO Box 782, KENT TOWN 5071

Hepatitis C Community News Winter 2006 •

Helping Adelaide’s African-Australians Johnson Juuk speaks Dinka, Arabic and Nuer but that barely scratches the surface of the 143 languages and 600 dialects spoken in his native Sudan. Language is just one of the many complexities of working with immigrants from Africa. Johnson and colleague Jasmine Judah are community workers with the P.E.A.C.E. program at Relationships Australia. Jasmine works with people from Central and Western Africa, including Liberia, Sierra Leone, Burundi, Congo and Rwanda. Johnson focuses on the Sudanese community. Working mainly with refugees, Jasmine and Johnson provide support to community members in dealing with settlement and other more immediate issues. In

that process, community members come to know and trust them and will voluntarily raise other issues.

Men’s Group Jasmine facilitates a monthly men’s group. “Due to cultural issues, there is usually some difficulty in engaging African men in conversations about their personal health,” she said. “So we allow them to bring the issues up themselves when they’re ready. Or sometimes, where opportunities arise, when we discuss settlement issues, we may be able to link them back to physical and mental health issues. “African male immigrants usually have no social channel to talk about their problems, so the group is quite important for them.” After five months, the group has now moved past settlement problems and is now talking about health.

Messages Johnson works mainly through the Sudanese Association of South Australia and its 15 sub-groups. “We will be focussing on hepatitis and HIV/AIDS,” he said. “Hepatitis B is a bigger problem with African immigrants but, to begin with, our message is general as there is little understanding of the differences between the different types of hepatitis.”

Foreground: Johnson Juuk Background: Examples of Dinka, Arabic and Nuer characters Hepatitis C Community News • Winter 2006

The two community workers explained that people often felt that they needed to hide information about their health because they were unfamiliar with the ways of Australian health professionals. In African communities, doctors disclose diagnosis to an elder family member who then help them break the news to the person with the illness. Local health professionals on the other hand, maintain a high level of confidentiality. In giving a diagnosis, they would speak directly, and only, to the person with the illness about their disease. “Some people interpret this to mean they are very sick and fearing being shunned by others, they won’t talk about their condition or seek more information,” said Johnson. “Often, there is misunderstanding over the diagnosis. Some, on hearing the word virus immediately think it is AIDS. One father sent his son away to protect him from what he thought was his own incurable, infectious disease. Only after it was explained to him in his native language what his infection was did he realise it was okay.” Cultural awareness The concept of viral infections is unfamiliar to many rural Africans, they said. Many assume viral infections are sexually transmitted, so anyone who has a viral infection is regarded as promiscuous, particularly women. Other barriers to living well with viral hepatitis include cultural views of how sick people ought to be treated. “Illness is often associated with sorcery or divine retribution,” said Jasmine. “Sick people are also expected to be confined to their rooms, not have visitors or go out. So people prefer to keep quiet about their disease.” Reaching out to the community to talk about health issues is only the first step in overcoming these

Jasmine Judah (centre, in black coat) with members of the African-Australian community barriers. “Health practitioners need to be more culturally aware. We need more friendly African doctors, from different parts of Africa,” said Johnson. “Local health workers regard Africans, as they do Asians, as one homogenous group. In fact, Africa is a huge continent with a great diversity of cultures. We need more workers and more education for health professionals.”

Community Ambassadors Half of the participants in the P.E.A.C.E. African men’s group had been health workers in Africa. Some of them will undergo training to become Community Ambassadors to take health messages back to their community. “We hope to have four Community Ambassadors for each African community,” said Jasmine Judah. “We are currently targeting four communities. Hopefully, by the end of this program, we will have 16 ambassadors spreading health messages on the ground, and providing support to new immigrants, particularly refugees.”

Hepatitis Conversations in Khmer A series of conversations in Khmer for broadcast over local multilingual stations will alert local Cambodians to the risks of hepatitis transmission, particularly when travelling overseas.

Many Cambodians have cosmetic surgery and other medical procedures during return visits to Cambodia because of the lower costs there.

Produced by the P.E.A.C.E. program at Relationships Australia (SA), the five-part program features two people, one of whom is planning a trip to Cambodia with her family for dental treatment and cosmetic surgery.

The discussions touch specifically on this issue, warning of the dangers of non-sterile equipment and suggesting strategies for assessing the safety of cosmetic therapists and dentists. Listeners were also encouraged to get hepatitis A and B vaccinations.

The discussions introduce basic information on liver function, give a general background to hepatitis and goes into the details of transmission risks for hepatitis A, B and C.

Designed to be played weekly, the conversations have been provided to the SBS and other multi-lingual stations in Adelaide. For more information, contact Dara Khiev on 8245 8100.

Hepatitis C & Australian Prisons: A Terminal Sentence? Facilitated by Dr Norman Swan, this will be a hypothetical-style event, with a panel of experts debating the role of prisons in the hepatitis C epidemic and options for the prevention and treatment of hepatitis C in Australian prisons. Place: The Justice and Police Museum, cnr Phillip & Albert Streets, Circular Quay, Sydney Time: 10am-noon, Tuesday 3 October, 2006 Further information? Email ahcinfo@hepatitisaustralia. com or call the Australian Hepatitis Council on (02) 6232 4257. Hepatitis C Community News Winter 2006 •

Making It Fair If you have experienced living with hepatitis C, then you have almost certainly experienced discrimination. That, unfortunately, is a fact. What is even worse is that this discrimination is often committed by the very people who ought to be fighting against it. Doctors, nurses, alternative health therapists, health service workers and other community service workers are expected to treat everybody fairly and equally, but it doesn’t take much to show that this is frequently not the case. Complaints about problems with inappropriate behaviour, communication (or the lack of it), treatment, access or individual rights are common. A little under a year ago, in October 2005, South Australia introduced a new system and a new organisation to help change things. The office of the Health and Community Services Complaints Commissioner (HCSCC) was created to resolve complaints about health and community services in the public, private

Introducing Leena Sudano Leena Sudano’s background is in health, community services, law and management, including stints as a union leader, Occupational Health and Safety and WorkCover board member, anti-discrimination advocate and health service improvement leader. Her management experience in the community services sector includes youth homelessness, women’s employment and antidiscrimination advocacy. Leena holds a Law degree, Honours First Class, from Flinders University. “The anti-discrimination experience I’ve had has been in a couple of areas. There were issues raised by union members about what they believed to be discrimination on the grounds of sometimes gender, sometimes pregnancy, sometimes sexuality, sometimes race, sometimes age. “Particularly when I worked with the Brotherhood of St Laurence Hepatitis C Community News • Winter 2006

and community sectors. The commissioner is Leena Sudano (see accompanying interview). As of July this year, the HCSCC has also been empowered to respond to complaints about child protection services. Now that the HCSCC is operating, what does this mean? If you, or someone you know, have a complaint about a South Australian health or community service, what steps should you take? Usually, the best first step is to complain directly to the service provider. There are a number of things you need to keep in mind when you do this. Try to decide what you want done to put things right: do you want an acknowledgement of the unfair treatment, an apology, a change in employee behaviour, or something else? It’s also best to ask to speak to a staff member who is trained to deal with complaints, and you should request a copy of the service’s complaints policy. Keep a personal record of any discussions in Victoria, and I was working with youth homelessness, many of the parents of those children were people with mental health problems or drug and alcohol problems, so there were discrimination and stigma issues there. “When I was director of the Working Women’s Centre, which was in effect an NGO that provided the equivalent of union advocacy for non-unionised women, we helped women who faced threats of dismissal because of sexuality, pregnancy, age and the like. “In the course of doing my law degree I studied a lot of topics that touch on this, and that includes women, children, and so on. I had two years working for the Commission for Racial Equality in the UK, at the time of the new obligations for public bodies to root out race discrimination, introduced after the Stephen Lawrence murder [a black teenager

or correspondence you have with representatives of the service, as this will help if you need to go to the HCSCC. You can also ask the service provider to keep you informed about the progress of your complaint— you are entitled to expect a response within 30 days. Some disputes will be resolved by going through this process. However, many will not. In an argument between an individual and an organisation, the individual is almost always at a disadvantage. You may well feel that, in addition to the original problem, the response from the organisation is inadequate. It may also be the case that you cannot make a complaint directly to the service provider because you rely on them for ongoing help, who died in a race killing, which the police were found to have not worked adequately to solve]. The idea was that you can’t just rely on individuals in an organisation, as the prejudice can be endemic, and so we need to identify the problems in the whole organisation and root them out. “In SA, the view is not that this prejudice is endemic—the focus of the legislation really is the idea that participation and having people’s individual backgrounds and requirements taken into account, as far as that is appropriate, are important. If those things don’t happen, and it’s linked to a grounded complaint under the Act, which is very broad, then you have the right to raise it. You should speak up, not only to get redress for your individual matter, but also for the opportunity to take action to minimise recurrence of the problem. “The thing we hear with refreshing monotony from people is, ‘We know you can’t change what

and believe that anything negative you say might end up making your position worse. In either case, the HCSCC exists to remove the power imbalance and to act as a fair and independent arbiter. When you approach the commissioner’s office, someone there may be able to suggest a different method of dealing with the problem, or you may need to lodge an official complaint. To make a complaint, you can fill out forms available from the commissioner’s office or its website, or you can call or write to the HCSCC. If you have language or literacy problems, an interpreter or assistant can be provided to help you in making the complaint, and to ensure that everything you feel is important is considered. Again, remember to supply any written records or documents you have kept.

the service provider, or it may be offering conciliation to help resolve the problem satisfactorily. The HCSCC can also refer part or all of the complaint to a relevant registration board or authority, to ensure that you are not deprived of your rights and that the service

provider complies with all of their responsibilities. It’s important to know that it costs nothing to approach the HCSCC. All of the commissioner’s services are free.

A straightforward guide to the HCSCC’s services and how to use them is available for download from www.hcscc.sa.gov.au/ documents/resources/a guide for consumers_Feb 2006.pdf, or else by ringing the office directly. To contact the Health & Community Services Complaints Commission: Phone: (08) 8226 8666 (metro area) or 1800 232 007 (Freecall for regional SA), Monday to Thursday between 10am and 4pm Website: www.hcscc.sa.gov.au Mail: PO Box 199, Rundle Mall, Adelaide 5000 Fax: (08) 8226 8620 Commissioner Leena Sudano

The HCSCC will then be able to take appropriate action. This may be an investigation of happened to me, but I don’t want anyone else to go through this,’— which is refreshing. “Most people want an adequate explanation, an apology if there’s been distress, an acknowledgement if there’s been a mistake or oversight, and an undertaking to put things right for that individual, if possible. They want to put it right so that somebody else doesn’t have to go through the hoops to get fairness.” What powers does Leena Sudano have as commissioner? “People are always very impressed by the word ‘powers’. Basically, I have the power that, if I ask a provider to give me information, having obtained the authority of the person making the complaint to get that information on their behalf, it has to be provided or there will be fines. Now, we have yet to have a provider decline to give that information, and I wouldn’t even expect that to happen even once a year, so I haven’t even had to use those powers.

“I think people understand that providing information is a cooperative approach that everyone needs to be involved in. You’d be, frankly, daft not to comply with a request. “My powers are essentially recommendatory. If I think certain things need to be done to provide redresses for an individual, or, more importantly, to prevent recurrence, I can make those recommendations. There’s no compulsion for people to observe them, but I would suggest to you

that if people are given the chance to put their house in order, and they don’t, then I believe I have a public interest to put that into the public domain, and I think that as soon as anyone knows that the spotlight will shine on them, things will move. “I have to say that the goodwill that’s been shown by providers across South Australia augurs well for a constructive approach—it means I don’t have to get out the big stick.”

Hepatitis C Community News Winter 2006 •

Self-Management Books Understanding Depression Maria Prendergast Penguin Books, Australia, 240p, 2006 At last we have a balanced, easy to read book on one of the commonest conditions affecting our patients. Many health books aimed at consumers are written by individuals or organisations trying to push an agenda or claim to offer patients the only way of dealing with a problem, but Understanding Depression is different. Through a balanced thoughtful approach, the author takes a compassionate but “no stone unturned” approach to all aspects of this poorly understood health problem that has such a dramatic and often devastating impact on our community. Taking great care and respect for her subject, the author critically examines the practical implications of our myths and beliefs around depression and their impact upon family, friends, the workplace and society. No issue is side-stepped: antidepressant controversies, psychological therapies, drug treatment in pregnancy, discrimination, co-morbidity and suicide are amongst other often-overlooked topics that are included. Of particular value are the collections of stories of those living with and affected by depression. I think these will be of great value to patients coming to grips with their own depression, or for people around them, and doctors should read them to see how effective they can be in helping people. Easy to read, well written, and comprehensive, Understanding

Hepatitis C Community News 10 • Winter 2006

Depression is a sound and, above all, balanced guide for consumers that can be confidently recommended to anyone affected by this common but grave condition. Dr Ronald McCoy Reprinted with kind permission by DepressioNet. Visit them at www. depressionet.com.au for more valuable information.

Lawns into Lunch: Growing Food in the City Jill Finnane New Holland Publishers, Australia, 144p, 2005 So, you’ve been told that you need to have a healthy diet—eat lots of vegies and fruits. But it’s a drag going to the supermarket. Those perishables don’t always stay fresh, and they’re not that cheap these days, either. Well, you can have your own greengrocer right at your doorstep—on your (former) lawn or pavement, in fact. In Lawns into Lunch, Jill Finnane tells the stories of 19 people who turned their backyards, front lawns, pavements and nature strips into sources of succulent feasts. These role models range from young alternative lifestyle devotees to retired school teachers. Although the settings are urban, each story is different. One person grew beans out of potato sacks, while another group turned a barren strip beside an electrical unit on their street into a thriving garden of choko, passionfruit, artichoke, pumpkins, flowers and herbs.

Each story comes with recipes and tips on permaculture. The book is also sprinkled with useful instructions for propagating your own plants, dealing with landlords and neighbours, shared gardening and saving seeds. Many readers will also find useful the information included on the use of herbs, spices and plants, as well as their traditional medicinal qualities and their nutritional benefits. Cecilia Lim

Living with Hepatitis C for Dummies Nina L. Paul Wiley Publishing, US, 292p, 2005 Living with Hepatitis C for Dummies is almost perfect as an introduction for people who find themselves suddenly needing to know a lot about this virus. An immunologist and virologist, Dr Paul has produced a worthwhile and comprehensive guide to life with hepatitis C. Early in the writing process, she asked one of her HCV-positive patients for advice. “I want choices,” the woman said. “I need info. I want to defuse my fears. And please, keep it simple.” Dr Paul has also written with one other important fact in mind— everybody who lives with hepatitis C is, that common factor aside, an individual. Age, gender, sexuality, lifestyle, nationality: all of these differ, and all can change the ways in which hepatitis C affects a person’s life. Remember, though, that this is very much a book for Americans. This means that some of the medical information is not appropriate to Australians, and that some of the advice should be taken with caution (such as the recommendation to ‘inform your sex partners about your hepatitis C’). The best way to counter this bias is to back up your reading of this book with a handful of HCCSA pamphlets.

New Liver Clinic for Aboriginal Health Nunkuwarrin Yunti is an Aboriginal community-controlled health service in Adelaide, providing primary health care and community support services to Aboriginal and Torres Strait Islander people. Our name was adopted from the dialects of the two largest clans in the southern region—Ngarrindjeri and Narungga—to represent the community, the services and the spirit in which they are provided. It means ‘Working Together’, and proclaims our belief in one community sharing a united vision for the future. This simple belief has seen Nunkuwarrin Yunti at the forefront of initiatives to improve the health, life expectancy and lifestyle prospects for Aboriginal and Torres Strait Islander people. We work with the community and other organisations to improve and expand our services in areas neglected by the broader health system.

improved health and well-being for Aboriginal people and the broader community. A number of programs work together here, including: ‘No Pulgi’, providing primary health service to homeless people in the metro area; the opiate substitution program; and the prison health service. Many of our staff are licensed to assist clients in the clean needle program, providing a confidential, culturally appropriate and nonjudgmental service from 9am to 5pm, Monday to Friday at our Wakefield Street site. In collaboration with the Hepatology Department at Flinders Medical Centre, Nunkuwarrin Yunti has recently launched a liver clinic with a specialist hepatologist visiting the health centre every week. This clinic covers all liverrelated conditions, and as such we will see anyone with any liver-

related disease. This will provide greater access for our clients requesting hepatitis C treatment, support and follow-up from their Aboriginal community health centre. There is a plan to provide treatment for hepatitis B in the future. We have worked closely with the Hepatitis C Council of SA on a number of collaborative programs, including the It’s In Your Blood music CD, and this partnership continues to provide information, resources and support for many members of the community we represent. I would like to thank the HCCSA for giving us this opportunity to promote the work we are doing here at Nunkuwarrin Yunti for the members of our community affected by hepatitis. Leslie Dunbar

Nunkuwarrin Yunti on Wakefield Street

I am a Registered Nurse employed in both the ‘NU HIT’ clean needle program, and the Health Centre here. My role is to deliver an appropriate harm reduction program, concentrating on the prevention of blood-borne viruses, and working on other primary health care strategies to promote

HeplinkSA Forum 2 The question of universal antenatal screening for hepatitis C was looked at during the second HeplinkSA forum in July. This forum also made use of tele-conferencing, linking Adelaide with Berri in the Riverland. Prof. Paul Goldwater, Medical Director, Virology of the Women’s and Children’s Hospital in Adelaide said the South Australian Department of Health has a policy of offering HCV screening on the first antenatal visit. He said the Women’s and Children’s Hospital, “routinely screen, with

informed consent, for syphillis, hepatitis B, immunity to rubella and hepatitis C”. He said the risk of mother to child transmission of hepatitis C could be reduced by changes in obstetric care during delivery. This included avoiding foetal scalp electrodes, foetal blood sampling, vigorous aspiration or suctioning and instrumental delivery. Prof Goldwater said while the Royal Australian and New Zealand College of Obstetricians and Gynaecologists recommended universal antenatal screening for hepatitis C, other national bodies recommended selective screening based on identifiable risk factors. In his presentation, Prof Goldwater also discussed hepatitis C testing

and treatment in children, as well as vertical transmission risks and issues relating to breast feeding. Other presenters at the forum included Bill Gaston from MOSAIC Counselling who gave an overview of the service and Leslie Wightman from the Hepatitis C Council of SA and Sandra Crockett from the Riverland Health Service who spoke about hepatitis C treatment support services in the Riverland. Cecilia Lim from the Hepatitis C Council of SA gave a brief outline of proposed programs for the coming Hepatitis C Awareness Week. Presentations from the forum are available on the Hepatitis C Council of SA website: www.hepccouncilsa.asn.au Hepatitis C Community News Winter 2006 • 11

C Talk positive speakers training program firing up… The HCCSA is currently refreshing its positive speakers program ‘C Talk’, starting with a 14-strong batch of new speakers-in-training. The training program is an intensive 4-day course designed to build skills in story construction, public speaking and basic hep C knowledge revision. On graduation from the training program, the new speakers will be inducted into the HCCSA education program and offered opportunities to accompany the education staff to assist in the delivery of the program by speaking openly about their experiences of hep C, and its effect on their lives. This important service is highly valued for its ability to personalise and humanise hep C, leading to increased understanding of not only the physiological effects, but the social, psychological and lifechanging effects of the virus on hep C positive people. Speakers are typically drawn to the C Talk program as a confirmation of their acceptance of hep C in their lives, and a willingness to use

Photo posed by model

community news

Speaking Positively

the experience to effect a positive influence and educate others.

journey of ‘opening up safely’ with my peers.

As the new coordinator of the C Talk program, I have felt immensely privileged to participate in the training program, dually as co-facilitator with Relationships Australia (SA) and as a fellow trainee learning the ropes of positive speaking, and to share the

The C Talk program is offered free of charge to community organisations when they book an education session. If you would like to book a session, please contact Nicci Parkin at HCCSA on 8362 8443. Nicci Parkin

Do you have a Hep C-friendly GP? If you do, we need to hear from you.* We are updating our Hep Cfriendly GP list for metro and rural areas. Please call Deborah on 8362 8443 or 1800 021 133 (SA regional callers) *We approach GPs for permission before putting their names on our list; and we do not reveal who nominated them. Hepatitis C Community News 12 • Winter 2006

Invaluable Info & Support Line volunteer Fred Robertson received a certificate of excellence for his eight years of volunteering at the HCCSA at a morning tea during National Volunteer Week, hosted by Kate Ellis MP Federal Member for Adelaide. The certificate was presented by Jennifer Rankine, South Australian Minister for Volunteers. Kate Ellis looks on.