24 June 2021
Name: Louise Hansford
Location: South England, UK
Job title: Hepatitis C Elimination Coordinator South for the NHS APA (NHS Substance Addiction Providers Alliance)
Specialisms: Peer-to-peer support
In our latest Meet the Members interview we spoke with the inspiring Louise Hansford who shared how lived experience has shaped her work with people who use drugs.
Louise is the founder of a peer-to-peer initiative in the South Coast of the UK, which helps previously unreachable communities access treatment and care for hepatitis C.
In our interview, Louise discusses the importance of peer work, the stigmatisation of people who use drugs, and how – although the improvement of HCV treatment is important – it is only just the beginning.
Tell us a bit about your background. How did you come to work in hep C?
I had an active heroin and crack cocaine addiction from 1996 -2003. When I was 16, my first boyfriend was a haemophiliac who had been infected with HIV and hepatitis C from contaminated blood products. Because of this, I had a good awareness of the risks associated with injecting and started with clean equipment.
However, following a motorbike accident in 2001, and a subsequent wrong diagnosis, my choices to use clean equipment were restricted. At the height of my addiction, I didn’t care about using clean intravenous injecting equipment.
I went to prison in September 2001, and at this point, I had a broken hip, osteomyelitis (bone infection) and was very poorly. Whilst there, a nurse who I liked asked me if I wanted a hepatitis C test. I didn’t really understand what it was, but because I liked her, I said yes. A couple of weeks later she told me I had hepatitis C.
This didn’t really bother me until my release in 2002 when I became paranoid about my razors and toothbrushes. I felt ashamed about my diagnosis.
I joined a 12-step fellowship where lots of people had hep C and I heard nothing but horror stories about treatment. At this time you needed to be drug-free for two years to be referred for treatment, but because of my other health conditions, I was offered Interferon and Ribavirin for the first time in around 2004.
I originally said no as I was scared about relapsing, mental health issues, and the impact on my relationships. I secured a job in February 2007 and a few days later was offered treatment again. After speaking with my partner and daughter we collectively decided I should do it. They said I would lose weight, but I didn’t, which devastated me! I worked all the way through, did my degree and maintained my life. I also spoke often with a friend who was also doing it, which really helped.
Tell us about your initiative, HepCHants P2P.
In 2012, Southampton recognised they had a hepatitis C problem that they weren’t getting on top of, and commissioned The Hepatitis C Trust to come and deliver peer-to-peer training. They opened this training out to Hampshire and the organisation I worked for sent three volunteers.
The approach was to deliver peer-to-peer workshops detailing five key messages, dispelling myths, and breaking down stereotypes. When our volunteers came back I said to my manager, ‘hey, you don’t know this, but I’m in recovery and I’ve also had lived experience of hepatitis C’. I asked if I could set up our own project, she said yes, and Hep C Hants P2P (peer-to-peer) was born.
I founded the project because when I was diagnosed with hepatitis C I had very little awareness of what it meant and I was scared to undertake treatment. I had also been on the receiving end of discrimination at dentists, hospitals, etc, where I felt very much stigmatised.
I wanted to offer people support to get tested, access the treatment, and ultimately save lives. You never know what is round the corner and earlier treatment can only be a good thing.
Why do you think peers are important to hep C elimination?
People can have a lack of trust in healthcare professionals due to their own experiences. Peers can help break down those barriers and share stories of hope. They can identify on a level that people without a hep C experience cannot. They also have more time available and are not so constrained by organisational policies and procedures.
Peer support is essential to break down barriers, dispel myths and tackle discrimination.
Do you think peers are currently used to their best advantage?
This is a difficult question, as I think every service needs peers, but they need to be used effectively and not just tick box. There needs to be ways of exchanging information and simplified referrals, but this can be challenging because learning about confidentiality, boundaries and appropriateness and timing of interventions comes with experience. However, the only way our peer force is going to learn this is by getting experience.
It is also really important that information about what peer support has been given to someone comes back to the service so that records are complete.
How have your own experiences shaped the way that you work with others?
I have people who never gave up on me, despite having every reason to. But I have also been on the receiving end of negligence due to discrimination and this ensures I advocate for our patients and challenge stereotyping and discrimination.
Recently we started four people on treatment whom I have been having conversations with for over 10 years. I will never give up on anyone. I genuinely believe that if I can become drug and crime-free, improve my life and maintain relationships, career, and studying, then anyone can.
What is the topic/challenge most on your mind at the moment when considering the health of people who use drugs?
We have a vast array of resources to eliminate hepatitis C now but the issues are much bigger than that.
Hepatitis C is often such a small part of a drug user’s life, and whilst I acknowledge our interventions have been life-changing, there is still limited resources to support people in other areas of their life.
We need to be focussing on the overall health and wellbeing of people who use drugs. We also need to raise awareness amongst health professionals around addiction and associated problems.
What is the one thing you’ve come across in your career that you think everyone should know if they work with people who use drugs?
That it can happen to anyone. Everyone is someone’s daughter or son. I chose to take drugs, I didn’t choose the seven years of devastation and degradation that came with it.
You could be the person that saves someone life. If your first thought is NO or we cannot do this… challenge it. I feel very privileged to have positively impacted over 500 lives by meeting people where they are at and empowering them to get tested, treated, and cured.
Why should someone join INHSU? What do you get from the network?
INHSU connects me with like-minded individuals, who are all committed to improving the lives of people who use drugs. Being part of INHSU has helped empower me to do my Masters in Public Health. Join now whilst we have a once-in-a-lifetime opportunity to eliminate hepatitis C.
Persevere because it is very rewarding and you never know when your intervention will sink into place and the person will take action. Together we can influence and enforce change at every level.
If you’re a member and would like to be profiled in our Meet the Members series, contact us at [email protected] with the subject line ‘Meet the Members’.
