Battling The Stigma of Hepatitis C

Care Appointments profiles an innovative campaign, launched to raise awareness of Hepatitis C and tackle stigma among care professionals across Scotland…

At least 16,000 health and non-health professionals, including GPs, NHS managers, Hepatitis C nurses, drug support workers and social workers, across the country are being targeted in a Scottish Executive led campaign to ensure people and their families affected by the Hepatitis C Virus (HCV) get the best care and support available.

The move fulfils a key objective identified in the recently published Hepatitis C Action Plan aimed at tackling rates of the virus thought to affect an estimated 50,000 people living in Scotland.

As part of the campaign, a website is being launched on January 30 which is based on the newly published Scottish Intercollegiate Guidelines Network (SIGN) on the management of Hepatitis C. Professionals will be able to access the website www.hepcscotland.co.uk to view the national managed clinical guidelines which include information on testing, referral and treatment of the virus. The website may be developed at a later stage for access by the public.

Work is currently under way to also develop a new suite of up-to-date information and materials for professionals and a talking heads DVD for GPs and patients. The materials will highlight the nature and scale of HCV across Scotland and explains the routes which the virus can be transmitted such as sharing drug equipment, unprotected sex, contaminated blood products, sharing razors, and ear piercing, body piercing, tattooing or acupuncture with unsterile equipment.

The DVD will feature people who have been involved in the diagnosis of the HCV and who have been treated for the virus talking about their experiences and is intended to be a ‘virtual support group’ for those affected.

Commenting on the information campaign, Dr Harry Burns, Scotland’s Chief Medical Officer, said: “Hepatitis C is a significant health problem in Scotland. I welcome the major steps which are being taken as part of the Action Plan to tackle this issue which includes a focus on improving knowledge among professionals to ensure those affected by Hepatitis C get the support they need and improved access to treatment. By tackling stigma through increased awareness and early diagnosis of the infection, we can help reduce future spread of Hepatitis C and prevent long-term complications.”

Hepatitis C is a potentially fatal liver blood-borne virus, however early diagnosis and intervention of people with the virus can prevent the transmission to others, a reduced rate of liver damage, and less risk of long term complications of HCV infection and treatment options.

Approximately one-third of those infected live in Greater Glasgow and a third in the Lothian, Grampian and Tayside areas. Two-thirds are male; the majority are aged less than 50. Testing is particularly important for former and current injecting drug users because of the greater risks of the virus being transmitted through sharing and re-using syringes and other drug equipment.

David Liddell, Director of Scottish Drugs Forum, said: “I welcome this drive to raise awareness about Hepatitis C and to tackle the stigma which continues to surround the virus. It is vital that the thousands of people in Scotland living with Hepatitis C receive the information and support they need. Providing relevant and up-to-date information to GPs and other health professionals and agencies working with people with Hepatitis C is an important first step towards improving our wider response to the issue. This in turn will help the quality of life for people affected by the virus.”

Approximately 20% of those infected with HCV will naturally clear the virus from their body and experience no long-term affects from the infection. However, for the remaining 80% a chronic long-term infection will develop. Many people don’t realise they are affected for some time afterwards, although generalized signs and symptoms associated with chronic HVC include fatigue  flu-like symptoms, muscle pain, joint pain, intermittent low-grade fevers, itching, sleep disturbances,  abdominal pain (especially in the right upper quadrant), appetite changes, nausea, dyspepsia, cognitive changes, depression, headaches, and mood swings.

{mospagebreak}The £4million Hepatitis C Action Plan launched in September 2006 aims to put in place mechanisms to ensure better coordination, planning and accountability of Hep C-related services and build on efforts to reduce the number of new cases in Scotland. The funding is being distributed to NHS boards to assist them in enabling improvements in these areas.

The move to provide professionals with up-to-date information and materials has been developed in consultation with key stakeholders, including the Scottish Drugs Forum, Health Protection Scotland, Hepatitis C Resource Centre, STRADA, and is based on research and evaluation of existing knowledge and materials available in Scotland. It is aimed at supporting specific key objectives identified in the Action Plan including reducing transmission of HCV among current injecting drug users, diagnosing infected persons, particularly those most in need of treatment, and providing the best care and support to those diagnosed with the virus.

Recent research carried out among professionals revealed they were aware of HCV but showed a marked gap between awareness and understanding of the condition in some sectors, particularly in primary care in the NHS. Some of those interviewed from the primary care professions believed HCV to be transmitted exclusively by needle sharing. Research demonstrated a clear need for an education campaign targeting key sectors of the health profession to raise awareness of how the virus is transmitted. It also revealed a very high drop off rate amongst patients who have been both tested and diagnosed with HCV and their follow up appointments within the NHS.

Professor David Goldberg, Health Protection Scotland said: “Hepatitis C virus infection poses one of Scotland’s greatest public health challenges and it is therefore vital to ensure that measures taken to prevent it, and diagnose and treat persons carrying it, fully addresses this challenge. I welcome this campaign to provide professionals in contact with persons who have the infection, or are at risk of becoming infected, with all the necessary information to diagnose and care for them effectively.”

Case Study: Recently Diagnosed With HCV

When former drug user Helen* discovered she had Hepatitis C, the news came as a bolt out of the blue, as for 25 years she didn’t experience any of the symptoms associated with the virus. It was through a routine check up, the 52-year-old was told she had the virus and as a result decided to undergo treatment which has since been successful.

“I was an IV drug user about 25 years ago and at the time I loved life and didn’t think anything of the consequences of my actions. I never had any of the symptoms which are associated with Hep C, so had no reason to think I was at risk from anything. In hindsight, it was naive not to think that the consequences of my past behaviour wouldn’t catch up with me. I was devastated when I found out I had the virus.”

Once diagnosed with Hep C, Helen had immediate fears for her daughter and grandson in case they too had contracted the virus. Helen explained: “I told my daughter and her reaction was ‘mum, don’t worry, it will be fine.’ She got tested for Hep C straight away and thankfully she was free of the virus. At first, I wished I’d never found out that I had Hep C but once I knew, I just couldn’t leave it and after much soul searching, I decided to get treatment.”

Reflecting on her experiences with health professionals, she said: “My own GP didn’t know much about Hep C but I had a good relationship with her and she was 100% supportive towards me. There was so much going on in my mind when I found out that I had Hep C and I just couldn’t think straight.

“Looking back, having more information from my GP about the virus and where to go for help, or even just being able to speak to people who also had Hep C, would have made such a big difference. I welcome any moves to provide updated information and raise awareness among GPs – I didn’t feel stigmatised in any way, although I know of people who haven’t been as lucky.”

Helen has since undergone six months of intensive treatment which had major side effects, including depression, feelings of paranoia and loss of appetite. At times she felt she couldn’t get through the treatment and thought about giving up, but with  the support of the Glasgow-based charity Anam Cara, she completed the course of the treatment and began to adopt a more positive lifestyle. Helen has since been told that the virus is no longer active in her system and has been able to start putting the experience behind her.

She said: “I feel I’ve been given a second chance at life and I have gone from a having a totally negative experience to a life that has never been better.”

* Names have been changed to protect identity
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Case Study: GP Experienced In Working With HCV Patients

Dr Kennedy Roberts has been working with patients with the HCV virus since the 1980s. In his current role, working with Glasgow Addiction Services, between 60 and 80 per cent of his patients either have HCV, or have markers for the virus (indicating they have had the virus at some point but cleared it from their system.)

The GP believes it is vital that services are linked to meet the needs of the thousands of Scots living with HCV and those unaware they have the virus: “I work primarily with drug users and the homeless and there is a high prevalence of HCV in homeless clinics,” Dr Roberts  explained. “It can be difficult to get drug users to focus on their health and the fact that they may be living with HCV but it is essential that we do identify these people and try to ensure they receive treatment for the condition.

“It is slightly more complicated for former drug users and people who may have contracted the virus in the past but have now moved on and changed their lives. These people often have no idea they are at risk and are unlikely to want to go back to drug treatment centres to be tested. It is vital for GPs and other primary care professionals to help identify these people and ensure they receive treatment and counselling.”

Dr Roberts believes that outwith drug users, there is a stigma around HCV which adds to the lack of awareness about the virus. He said: “There is no question or doubt that there is a stigma surrounding HCV and I think that this is down to the fact that people don’t realise you can contract the virus in different ways, not just through needle sharing.

“That applies even to health professionals and in some ways the stigma is worse than it is for HIV, where at least people now understand that it isn’t just drug users who contract it. We need to try make the transition that it should be irrelevant how an individual patient contracts a disease and offer evidence based treatment and care suited to the individuals affected.”

Dr Roberts welcomed the Scottish Executive’s campaign to raise awareness of the virus amongst professionals and to reduce the associated stigma: “There are a lot of doctors and health professionals who are interested in HCV and I welcome any efforts to raise awareness,” he said. “It is vital that we get professionals talking about the virus and the best ways in which we can help those patients living with it. By stimulating debate on the subject and reducing the stigma, we can make sure we are offering the treatment that is best for the patients themselves.”

Case Study: HCV Diagnosed Individual

Landscape gardener David* discovered he had Hepatitis C years after being mis-diagnosed as having a serious drink problem. The successful self-employed businessman from Glasgow knew there was something wrong when he went from having bundles of energy to feeling unwell. Fatigue, stiff joints, changes in temperature, and feeling nauseous, were the first symptoms of
the virus.

“I just knew within myself that something wasn’t right and I decided to go to the doctor to get checked out,” David explained. “They carried out blood tests on me and afterwards started questioning me about my drinking habits. Sure I liked a drink or two but I wasn’t what you would class as your stereotypical hard-drinking Glasgow male. I got sent home and told to cut down on my drink – all my symptoms and concerns were shrugged off, when, in fact, there was a timebomb inside me.”

He acknowledged: “This happened in the early-90s when there wasn’t the same awareness as there is now around Hep C and there was a lot of ignorance about the condition.”

The father-of-two returned home and ‘plodded’ on with his life until his health began to worsen many years later. He returned to his doctor who referred him to a consultant who carried out further tests, later revealing he had Hep C.

“What was Hep C? I had no idea what he was talking about,” explained David. “He started asking me whether I had ever been involved in doing drugs and other partners that I may have had. I had never dabbled in drugs, had a reasonably healthy lifestyle, and had never done anything which would have put me at risk from contracting Hep C, so how could this happen to me? I had reached a stage in my life where after working so hard to be successful, I had been looking forward to spending quality time with my family and enjoying life.”

David, 48, was eventually sent to a counsellor but found himself still experiencing misconceptions that he had been a former drug user. “I was an early victim of the early 90s, but there is definitely more awareness out there and more information available about Hep C. The condition at that time was still in its infancy, but I would hope that now people are getting diagnosed a lot quicker. If anyone is going to the doctor for with a range of symptoms similar to that I had, doctors should carry out a blood check to rule out whether it is Hep C. It is a condition that cannot be ignored. I welcome any steps taken by the Scottish Executive or other agencies to provide more awareness and tackle stigma.”

David has has since undergone treatment and is receiving support from the Glasgow-based charity Anam Cara, which is for people with Hepatitis C. “Groups such as Anam Cara are worthwhile projects which have given me tremendous support, and has helped me socially and professionally,” explained David. “At times when I have felt low, I know that I can turn to the group and find support in people who understand what I’m going through.”

* Names have been changed to protect identity

Professionals seeking more information can visit www.hepcscotland.co.uk