The Hepatitis C Trust
The Hepatitis C Trust
• Information Website. The Trust operates a website (www. Hepctrust. Org. Uk) dedicated to being the most authoritative, comprehensive and up-to-date information resource on hepatitis C in the UK.
• Survey. The Trust is conducting a major nationwide survey of people with hepatitis C, focussing particularly on their experience of different forms of treatment, both conventional and alternative.
• Training. The Trust has provided training for hepatitis nurses to help them offer improved support for patients undergoing the often difficult hepatitis C treatment currently available. We are also developing hepatitis C training for Drug Action Teams.
• Helpline. The Trust has a national telephone helpline manned by volunteers who themselves have hepatitis C (or who had it and cleared it). This offers a level of support and understanding that has been desperately lacking. The Trust is a member of the Telephone Helplines Association.
Disease Self-Management. The Trust has created and is running a new self-management course specifically for those with hepatitis C for whom treatment is not available or has not worked. We also host a monthly support group at the Trust’s offices.
• Lobbying. The Trust is in regular contact with MPs and continues to lobby the Government for a more robust response to hepatitis C.
• Patient Advocacy. The Trust works with Primary Care Trusts to ensure patients get the care and treatment to which they are entitled under National Institute for Clinical Excellence guidelines.
• Patients Association. Hepatitis C, unlike HIV, has not yet had a voice and this is one of the reasons it has been ignored so consistently. The Trust has established a Patients Association to change this.
• Awareness Campaign. Huge numbers of people with hepatitis C are unaware of it and at great risk of developing severe and ultimately fatal liver disease, literally dying of ignorance. The Trust continues to promote awareness through the media and is working with the DH on a national public awareness campaign.
Registered Charity Number: 1104279
Phone number: 020 70896201View charity accounts on the Charity Commission website