Survey demonstrates need for improvement of hepatitis C services

An estimated 160,000 people are living with hepatitis C in England. Yet, in 2015, fewer than 12,000 people were diagnosed and fewer than 10,000 people were treated (1). Infected individuals can unknowingly transmit the infection, which makes preventing new infections – and eliminating the virus as a public health threat – a significant challenge.

People who inject drugs are believed to represent around ninety per cent of total hepatitis C cases (2). Over the last three months the I’m Worth… campaign, in collaboration with DDN has been surveying professionals working in substance misuse services in the UK.* The aim was to help identify and address the barriers and educa­tional gaps around hepatitis C to ensure those working in substance misuse services and campaigns such as I’m Worth…, can provide meaningful support to those most at risk.

Throughout the responses, three major challenges were identified.

1. There is a lack of understanding about hepatitis C care amongst service users  

‘I regularly see service users who are partially or substantially ignorant of issues around hepatitis C.’
Drug and alcohol support worker

Sixty-six per cent of addiction support workers state there is not enough information about hepatitis C diagnosis, care and services available for people with substance misuse problems. There is a lack of understanding of hepatitis C among service users and not enough opportunities to educate them about the disease. This demonstrates the need for additional education and resources to be made readily available for people accessing addiction support.

‘We need loud voices explaining that safe treatment is now available and they [hepatitis C sufferers] are entitled to it. Clear, simple messages of getting everybody treated, and the possibility that hepatitis C could disappear from communities if everyone accessed treatment.’ 
General practitioner

2. Service users often have a poor relationship with health services

‘Most of our clients don’t have a good relationship with the NHS and hospital care through bad experiences.’
Nurse practitioner

Almost two thirds of respondents felt that the number of hepatitis C sufferers linked to care was poor. Stigma associated with both addiction and hepatitis C means that many of these individuals are often reluctant to engage with care.  It is therefore important to tackle the stigma around the disease and develop a more systematic approach to actively seek hepatitis C sufferers and provide them with convenient ways to access treatment.

‘Many clients feel that there is not enough help, support, compassion and facilities available. They suffer judgement every single day.’

3. Chaotic lifestyles are a barrier to care

‘The biggest challenge is their general lack of self-care. Often people will be aware that they have hep C or that they are very likely to have it, but won’t seek testing or treatment for years.’  
Drug and alcohol support worker

Given the challenges people dealing with addiction face, managing their health is often unlikely to be a priority. Many users do not take care of themselves and are therefore unlikely to have the motivation or resources to seek diagnosis, or if they are positively diagnosed, they may be reluctant to undergo treatment. Support is needed to improve the number of people linked to care and opportunities for sufferers to share their personal experiences via peer-to-peer meetings.

‘[Once diagnosed] It can feel like just one more thing they have to deal with and it’s not always clear to them how this may improve the quality of their lives when they are so unstable.’  
Drug and alcohol support worker

The survey results show that more needs to be done to support hepatitis C patients. Despite the WHO worldwide ambition to eliminate hepatitis C by 2030, the UK is without a written disease strategy and has no complete framework in place to trace, track and treat people with hepatitis C. In the absence of a complete care framework for hepatitis C, community-based services become a key component for HCV treatment and drug treatment centres become a gateway for people at risk to access care. It is therefore important that service workers feel confident in encouraging testing and providing service users with advice on next steps and available treatments.

The I’m Worth… campaign aims to help spread awareness and understanding of hepatitis C. It is designed to empower people living with the virus to get tested, access care and services, highlighting that all people living with hepatitis C deserve the chance to be treated and provided with the best care available, no matter how they were infected.

*    48 respondents which included peer support workers, GPs, social workers and nurse practitioners.

1 Public Health England. Hepatitis C in England: 2017 report. (2017).
Available here
2 Hudson, B., Walker, A. & Irving, W: Comorbidities and medications of patients with chronic hepatitis C under specialist care in the UK. Journal of Medical Virology. (2016). Available here

November 2017, HCV/UK/17-04/NM/1634g

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