This year’s theme for World Patient Safety Day is engaging patients for patient safety, recognising the crucial role those with lived experience of conditions have in supporting better patient care. Patient engagement has been essential to NHS England’s world-leading hepatitis C elimination programme, with the goal of eliminating the virus as a public health threat in advance of the World Health Organization target of 2030. Working in partnership with the Hepatitis C Trust, a charity dedicated to eliminating hepatitis C, it has been possible to elevate the voices of those cured of the virus to help find and treat the remaining patients in the country.
England is well on the way towards its elimination goals, with over 84,000 patients treated and cleared of hepatitis C, we have now reached the point where more people have been treated than are left to treat. However, there are still up to an estimated 70,000 people left to find – and what has worked to find patients so far, might not work so well for those that remain to be found. This is where former patients, also known as peers, come in.
Hepatitis C is more highly prevalent among injecting drug users, people from countries with higher rates of hepatitis C infection, or those that have been exposed via other blood-to-blood contact transmission routes. The Hepatitis C Trust recruits peers, who typically have been treated for the virus or who have lived experience, to help engage those who may be at risk with testing and treatment. These experiences give them an understanding of the wider issues affecting those at risk of hepatitis C, enabling them to reach into diverse communities, or provide support and expertise for third sector and NHS services to engage.
Rates of hepatitis C are higher in prison populations, where people are more likely to have shared items such as needles and other equipment used to take drugs, tattooing equipment, toothbrushes or hair clippers. Identifying and treating cases in prison at the earliest stage, before the virus has been passed on, will accelerate progress towards elimination within prisons and prevent wider spread.
Every prison in England has access to peers, many of whom have had direct experience of living with hepatitis C as a prisoner. Offering testing, education, support and access to treatment, the peers have security clearance to work directly with men and women on their wings. Alongside, supporting and encouraging testing at the point of entering prison, the peers also play a central role in preparing for and carrying out high intensity test and treat (HITT) sessions, regularly seeing more than 95% of people in each prison tested for the virus.
Peers have been pivotal in increasing the uptake of testing, providing assurance to new people coming into prison, often working outside of typical hours to ensure no one is missed. They will also go out into the wings to see those that have refused testing. The majority of people change their minds once they have spoken with a peer, and the peer will then complete the test and feed the results back to the healthcare team.
“Now that screening is so simple and treatment is available to everyone it is really propelling us to having hep C free prisons” says Lee Devereux, Southern England and Wales Prison Regional Manager at the Hepatitis C Trust.
“The main side effect of treatment that I witness is getting a spring back in their step and a greater sense of self-worth for taking responsibility for their wellbeing, it’s magical to watch these residents come back to life”.
As a result of the work in prisons, 16 prisons have now achieved micro-elimination, meaning 100% of people eligible have been offered a test, with 90% uptake in the last 12 months and 90% of those diagnosed with hepatitis C starting treatment. Many other prisons are working towards micro-elimination.
During the COVID-19 pandemic, peers worked alongside local health care teams, to reach homeless populations in hostels, raising awareness and encouraging them to leave their rooms and get tested. And through collaboration with organisations such as St Mungo’s, peers are able to reach even more people, helping them to access testing and lifesaving treatments.
People from the South Asian community also face specific challenges in accessing services and care, in addition to higher prevalence of hepatitis C. Cultural sensitivities, the stigma of being associated with the virus and limited awareness, or even misinformation, make pathways to diagnosis and care particularly difficult.
People from South Asian communities with lived experience have a better understanding of some of these cultural sensitivities – and being armed with the correct information and easy access to testing can make a difference within a community. Being accepted by religious groups and community champions can change perceptions of hepatitis C and encourage wider testing and access to care.
NHS England has started to make even greater progress in reaching these communities through the launch of the online testing portal this year, where people can confidentially order at-home testing kits. So far, almost 10,000 people have ordered testing kits, with more than 20% of those orders being made by people with South Asian backgrounds.
We know that the peer programme is effective in meeting the challenges of diverse communities and encouraging more people to take up testing and treatment. Elevating the voices of those with lived experience will be critical in finding the last remaining cases and bringing England closer to eliminating the virus as a public health threat.
If you are over 18, live in England and concerned about your hepatitis C risk, you can order a confidential at-home testing kit from the online hepatitis C testing portal.