In this interview, the first of a series called #PeerSupportMeans, Samantha May who has managed The Hepatitis C Trust’s helpline since it started in 2004, talks about the support that she and her team have been able to give people with hepatitis C over the years.
How did you first become involved with The Hepatitis C Trust?
I was diagnosed in 2002. Long before then, I had been tested for hepatitis B and also HIV, after the infamous HIV/AIDs “Don’t Die of Ignorance” TV campaign started in the mid-80s, but I had no awareness of hepatitis C, nor was the test ever offered to me or the possible risks discussed. It was only when a former partner from my late teens got in contact and told me that they had tested positive for hepatitis C that I decided I should go and get tested
At the time, I felt okay, I was very active working, and there was nothing to suggest anything was wrong, but she was insistent that I get tested. When I went to the GP to arrange this, they weren’t that worried about it either, saying “if you’d had it for over 20 years it would have been picked up or you would be feeling unwell by now”.
It hadn’t, I didn’t, and the test came back positive.
In terms of information, there was nothing out there at that time. The GP couldn’t say much, on the internet there were just a few sites, some of which were, on reflection, quite sketchy with confusing information. I tried to find a book but there was just a general one about liver disease with a page about hepatitis C but little more.
It also wasn’t something I really wanted to talk to anyone about. It soon became apparent that other people get scared and (wrongly) worry you are going to pass it on to them. I felt very alone and it was awful not having any information. I could talk to a few close friends, and they were very supportive, but there wasn’t anyone who was remotely informed about it to discuss my concerns with.
Then, one of my friends happened to find this scrap of paper on a noticeboard in a youth club in Tottenham. It was from a fellow patient inviting other people with hepatitis C to get in contact with him for support. When I spoke to him, it was a massive relief to not feel so alone and to understand that there were, in fact, so many of us out there. He was the one who told me about a new organisation that was being set up called The Hepatitis C Trust.
When I called them, it transpired that it was just two people working from a desk in a shared office at the time. On my first call I spoke to Charles [Gore] who was the founder and he was just so patient, kind and supportive. I had felt dirty and ashamed, but Charles was so relaxed and open about it and it was a total revelation to hear that he’d also had it himself. We could have been talking about having something like a cold, there was no drama and I just felt like I was talking to an old wise friend. I asked a million questions and he answered them all and simply gave me the time I needed, which was incredibly empowering.
I came off that phone call feeling so much more hopeful and like I was a “normal” person again, I can’t tell you how wonderful that was. I called back a few more times over a few months, speaking to Charles and also Jane, another fellow patient who was working alongside him, and each time my experience was the same. It had such a huge positive impact to not feel alone, have proper information and be supported and not judged.
In 2003 I started a six-month-long interferon and ribavirin treatment, which was very punishing in terms of both mental and physical side effects. For the first time, I felt really ill and it took a further six months to feel better, even after it had finished.
Having been supported by Charles and Jane during this time, I really wanted to give something back and get involved in some way to help them.
At first, along with my new friend from Tottenham, we secured funding for several thousand hep C badges, (the red and yellow ribbons) and we jointly approached Charles to see if he could make use of them.
I think Charles could see that I was keen to get involved and after a very short stint volunteering with them, he suggested I come and set up the helpline. Without any hesitation, I left my existing job and it was launched in July 2004, just months after I had been given the news that I was cured of hepatitis C.
What were those early days at the Trust with the helpline like?
It’s been 17 years since we launched the Helpline, and in that time with the dedication of fellow staff and the commitment from our volunteers, we have taken over 53,000 calls to date encouraging people to get tested, come to terms with their diagnosis, motivate them through treatment and assist them with the multitude of other problems it can throw up in their lives.
It didn’t take long for me to realise that the difficulties I had faced were very small in comparison to some of the stories I have heard and sadly continue to hear on the helpline.
Having hep C is so complex: aside from the direct worry of how it will affect us health wise, families break up, jobs are lost, relationships break down, prison sentences are started, mental health deteriorates, relapses occur, some live in paralysing fear of passing it on and others are misjudged or stigmatised – simply because they have it.
Thankfully, we are now in a much better place and things have improved a lot over recent years, with more research, more information and support through the internet or through services and treatments are easier, shorter, safer and way more effective.
And yet we still hear from patients about how GPs have little or no information on hep C or, even worse, give bad information or are insensitive to people when they are just diagnosed.
Appointments with the consultant or the nurse are few and far between and people still find it hard to be open with friends or family because of the stigma.
Here on the helpline, however, we filled these gaps by providing ongoing support, information and lifestyle guidance to people, whenever they needed it and for as long as they needed it.
By callers being able to identify with us in a friendly, safe and confidential space, it ensured any barriers were dropped, so they can talk freely and we can seize the opportunity and take the time to inform and reassure on every call. This is so important to do because it may be the only time that person reaches out for help.
The helpline is the heart of The Hepatitis C Trust’s work and aside from our website, was the first major service we provided for patients. The issues we hear about feed in to all the Trust’s work and help keep us focussed on all the difficulties people are facing out there.
Charles knew from the start how important this peer-to-peer contact between patients was. It’s especially important with something that is so stigmatising and awkward like hepatitis C.
In terms of the volunteers, over the years we’ve had all sorts of people, young and old. People who caught it through drug use, through infected blood via transfusion or from blood products as a result of haemophilia treatments, medics who had had needle stick injuries in the course of their work and others who simply didn’t know how they had caught it. We have also had people with cirrhosis, those who went through early clinical trials, liver transplants, were coinfected with HIV, those who chose not to do treatment at the time and those that did and it was not successful.
I think the collective learning we got from each other, really helped us to be relatable, informed and accessible to others.
Could you describe the types of issue people generally called with?
Charles’s first task when he set up the Trust was to create a website dedicated to hepatitis C. Given there wasn’t much information around elsewhere, this really covered everything: the tests, the treatment, the side effects, where you can go if you were being discriminated against, what food to eat to support your liver, how to tell others about your diagnosis … everything.
As a result of this resource, you didn’t have to be an expert in hepatitis C to answer calls on the helpline. We trained people with listening and counselling skills and learnt as we went along. If someone asked a question that was outside of your knowledge, you could simply go to the website and refer to the information there, or if it was more complex, we had access to a panel of helpful liver specialists who could guide us.
In the early days, calls would usually be from very distressed and traumatised people who were really concerned about their confidentiality. You could tell how worried they were, and they often asked things like “Is this confidential?”, “do you know where I’m calling from?” or “are you going to tell anybody I’ve got hepatitis C?”. People were really that frightened of talking to others
A lot of our callers back then were people who’d just been diagnosed. They had all these questions, just like me when I was diagnosed: they didn’t know where to go or what to do and if they had heard about the interferon treatment they were absolutely terrified about it. It cannot be overstated how reassuring it was for people to speak to any of us on the helpline, speaking openly about our experiences, just as it had been for me when I called Charles. And as we all had slightly different experiences, whoever you spoke to you got a slightly different angle and perspective, but backed up with the core information from our website.
It also enabled us to often match callers up with someone in the same boat, so not only the hep C connection, but also the route of transmission, or that treatment had also failed them, or they had been through a liver transplant.
That in turn had a positive impact for our volunteers too. Although we never had a big sign on the building saying ‘The Hepatitis C Trust’ people would often arrive for their first shift feeling very anxious that someone would see them, often covering their faces with hats and scarves. But as soon as they came inside they were able to relax, sit down, pull up a chair and feel really comfortable and be supported. Many of us still had our own questions, needs, worries and paranoia about it in those early days, but we were all able to learn from and support each other.
You could hear the relief in their voices, they often started the call so quiet and nervous – and by the end of the call they’d be chatting away freely and happily.
How important was the lived experience of the people answering the helpline to those calling?
It was absolutely crucial to establishing trust and open, frank discussion. It still is, it is hard to describe how very dark the experience of being diagnosed with this illness and going through the interferon and ribavirin treatment was. It wasn’t just that the old treatment physically made you feel awful – for anything from six months to a year or longer – but there was the psychological effects of living with all of this, compounded by the actual side-effects of the drugs on your mental health, which wasn’t really discussed by doctors.
That could be quite shocking for people, the treatment could really pull you down, you could become very paranoid, over emotional, tearful, and very quick to anger.
For people to go through all this, unsupported, on their own, when their doctor hasn’t talked about the full range of side effects and you’ve got an illness that no one knows about, feeling stigmatised and isolated … to be able to call and get through to somebody who could say “I was like that”, answer their questions and reassure them, was just transformative.
You could hear the relief in their voices, they often started the call so quiet and nervous – and by the end of the call they’d be chatting away freely and happily. And even if they found themselves struggling with something else the next day, week, month or year, they’d trust us and feel comfortable enough to call again. In fact, even now we still hear from some of our early callers. They may have got rid of their infection years ago, but often the practical problems that hep C causes, the long-term effects of the early treatments and other physical and psychological issues may still continue to affect their lives. It is great that they feel they can pick up with us again many years later and lovely to be able to provide that continuity to them.
It felt incredible to be part of such a small and dynamic organisation. Even in those early days we were still able to make giant leaps, just purely by being able to support each and every person, give them time and space to speak, share our experience, give sound information and help motivate and encourage them to make positive changes to take control of this illness.
That was, and still is, our real strength.
How has the helpline’s work changed over time, as treatments have improved and as we’ve started to work towards eliminating the virus?
In the early years, we were very much a port of call for people who’d just been diagnosed or people going through treatment. Many of our callers in the early days were from those who had used drugs in the 60s, 70s and 80s.
If it wasn’t about doing treatment, being on treatment or recovering from treatment it was about managing your lifestyle, so not drinking alcohol, managing stress and eating well. The Trust would run health day workshops which focused on this but equally were a space for people to come together and learn from each other in a friendly and open way. Then the Trust started running support groups, which were very well attended and provided a safe and confidential place to meet others. Little by little, the helpline would link people into these other services and slowly the Trust took on more staff to offer this additional support.
However, even in those early years from 2004 onwards, we heard from people infected through blood and blood products given by the NHS before 1992, but back then it was once in a blue moon.
Over time, callers from this group increased steadily and it has now become a huge part of our work. We take calls from people with all sorts of queries: people who had blood and blood products in the past but who have never been tested, those who have just been diagnosed after decades of infection, people needing help accessing financial support from the Blood Support Schemes set up to help them, or people who despite being aware of their status for many decades, still have many questions that others have not been able to answer.
We are also a Core Participant in the Infected Blood Inquiry, and continue to work closely with them, providing awareness-raising sessions to their team, informing them about the issues we have heard about in the course of our work and supporting and encouraging those infected and affected to come forward and give evidence
Over time, we’ve also started to hear more from professionals in drug services, prison staff and medical professionals and they in turn signpost people to us for information. The range of people who call has grown hugely over the years; services working with people who are homeless, GPs, students, the media and researchers and increasingly, with growing awareness about hepatitis C, the general public.
Whilst the helpline is about supporting people with hepatitis C and being a source of information on that, the issues people come to us with range massively. It is not simply just about hepatitis C, it never has been, it’s about all the issues linked to it like people’s addictions, poverty, impact on relationships, employment, their self-worth, other health conditions and more. I think we’re really the only place people can come to and bring all other that stuff as well and we do all we can to make sure they get help in all these other areas too.
Looking forward, now we are looking at how we can better continue to develop the scope of the helpline as a central hub and resource to support our plans for elimination of hepatitis C by 2030. For example, with drug services or healthcare professionals, we can now link them in with our network of peer support workers. And if I have somebody call wanting to be tested but they don’t want to go to their GP, now I can put them in touch with one of our growing team locally, who will be able to get them tested and also accompany them to any follow-up appointments, deliver the treatment to them and so on.
To be able to offer that kind of face to face/hands on support is just so amazing and illustrates how much we’ve been able to move forward.
Hepatitis C remains a serious illness of course, but with this additional support for people to now get tested and treated with new highly effective tablet only treatments, in such a quick, easy and supported way, it reduces the impact and the stigma it can have on people by getting it dealt with swiftly.
According to Public Health England/Health Protection Agency figures, there are practically as many people out there undiagnosed as diagnosed and so we all need to come together and focus on finding those who don’t know they have hep C to ensure they have access to treatment, know their rights if they have had a blood transfusion, slow down the rates of transmission and most of all, don’t find out too late when serious liver damage or other health issues have started.