We run a range of services that provide support, information and representation for people with hepatitis C. We are also committed to raising awareness by working to highlight the advantages of getting tested. As well informing the general public about the truths of hepatitis C to reduce misconceptions and promote support and understanding around the subject.
The aims of the Trust are:
- to help those with hepatitis C, primarily by providing them with both information and support
- to raise public awareness of the disease. Half a million people in the UK have hepatitis C but 9 out of 10 people who have it still don’t know.
- to campaign for a sensible and vigorous government response to this epidemic
- to initiate research into the many areas of hepatitis C that continue to be poorly understood.
Hepatitis C Trust Projects and Services
INFORMATION
Website
www.hepctrust.org.uk is dedicated to providing the most comprehensive information on hepatitis C in the UK. Constantly updated with the latest news, it is increasingly interactive, with a discussion forum, surveys and ways to get involved in raising awareness with politicians and with the media.
Email Information
Staff at the Trust will provide patient centred responses to questions emailed in to us. If we cannot answer a question ourselves, we make use of our advisory panel of doctors.
Online Discussions
The Trust regularly invites experts in a wide variety of fields, including clinicians, nurses and also complementary practitioners, to answer questions from patients live online. Up to 5,000 people at a time have logged in for these discussions.
Leaflets
We produce a range of information leaflets that target specific sectors of the population that may be at particular risk, such as the South Asian community and HIV+ gay men.
Newsletter
A free tri-annual newsletter that provides information for both patients and professionals is produced and distributed by the Trust.
Information Talks
Demand for basic information talks on hepatitis C continues to grow, particularly from prisons and drug workers. We give these talks, mostly for free, but with our small core staff this is becoming increasingly difficult.
Training
We have a professional module for Drug Action Teams. We have also developed training for hepatitis nurses to improve support for patients
undergoing the often difficult hepatitis C treatment.
SUPPORT
Helpline
The Trust's confidential national helpline 0845 223 4424 is run by staff and volunteers who themselves have hepatitis C (or who have had it and cleared it). This makes it much easier for callers to be open and candid. Callers often ring and ask for information but also need emotional support. We are a member of the Telephone Helplines Association.
Online Support
Our website includes a number of patients' stories as our research with University College London revealed that some patients, at least initially, found it daunting to call a helpline but nevertheless wanted the support of reading
about other people's experiences of hepatitis C.
Support Groups
We currently host four different support groups at the Trust's London offices: a mixed diagnosis and treatment issues group, one for those living with the virus, a women only group and a gay men's group.
Health Day Workshops
The Trust runs disease self-management workshops specifically for those with hepatitis C for whom treatment is not recommended or has not worked. Based on the NHS Expert Patient Programme, these courses show patients how to take control of their disease and manage it effectively.
REPRESENTATION
Parliamentary Work
The Trust provides the secretariat for the All-Party Parliamentary Hepatology Group and continues to lobby the Government for a more robust response to hepatitis C.
PCT Report
We regularly audit the performance of the NHS in England in relation to hepatitis C and created the Anita Roddick Memorial Award for the best
performing Primary Care Trust.
Patient Advocacy
Our advocacy staff work with the NHS to ensure that Hepatitis C Action Plans are implemented and that patients get the care and treatment to which they are entitled.
Patients Association
We have established a Patients Association to build a patient community with a strong coherent voice and to foster active participation in awareness raising.
Consulting
The Trust provides the patient perspective to a range of organisations including NICE, the Department of Health (DH), the Scottish Government and the Welsh National Public Health Service.
AWARENESS RAISING
Poster Campaign
We are running a poster campaign in GP surgeries and on public billboards throughout the UK to raise awareness of hepatitis C so that those at risk of developing severe and ultimately fatal liver disease have the chance to get tested before it is too late. We also support the DH's national public awareness campaign.
Media
The Trust continues to promote awareness through the media by placing hepatitis C stories in both local and national media with the objective of pushing hepatitis C higher up the national agenda.
What Not To Share
Our ongoing prevention programme aimed at 15-to 30-year-olds uses celebrities and others in the music industry to engage their attention and
focus on harm minimisation. The website www.whatnottoshare.com features a variety of opportunities for interaction.
HIV+ Gay Men
A campaign to alert HIV+ gay men to the risks and the consequences of co-infection has been initiated as new sexually transmitted hepatitis C
infections are increasing 20% year on year amongst this group.
South Asian Community
The Trust is researching the best ways of communicating awareness messages to the Pakistani population in the UK, where prevalence
rates are much higher than in the general population.
Fighting Stigma
Hepatitis C is stigmatised as both a drug users' disease and as a sexually transmitted disease and the Trust is committed to correcting these
misconceptions that serve only to discourage people from coming forward for testing.
INTERNATIONAL
ELPA
The Trust is a founder member of the European Liver Patients Association, an umbrella organisation with 20 member associations in 17 countries founded in 2004. Our chief executive served as ELPA's first president.
EU Parliamentary Work
The Trust worked with other ELPA members to secure the support of 470 MEPs, ensuring that the EU Parliament adopted a Written Declaration
in 2007 calling for concerted EU-wide action to tackle hepatitis C.
World Hepatitis Alliance (WHA)
The establishment of this new Geneva based NGO representing patient groups across the world was driven by the Trust. WHA is committed
to raising global awareness through World Hepatitis Day every May 19th.
RESEARCH
South Asian Project
The Trust is conducting research into the prevalence of hepatitis C amongst the South Asian community in East London with the help of a large Lottery Fund grant
Online Post-treatment Survey
The completely neglected area of the patient experience after treatment has been researched by the Trust, clearly demonstrating that further investigation is required.
Interactive Health Communication Applications
In conjunction with University College London we researched what patients want in relation to a health website. This informed the inclusion of case studies and other functions on our website.
Complementary Therapies
We commissioned research from Exeter University into the use of complementary and alternative therapies for hepatitis C as well as carrying out our own patient study in this area.
