Hepatitis C patients and nurses highlight impact of the virus in new reports
Hepatitis C patients and nurses have made clear, in two reports launched by The Hepatitis C Trust today, the significant challenges still faced by people living with the virus, including societal stigma as well as the on-going restrictions on access to NICE-approved, curative treatments.
The reports, titled Patient Perspectives and Nurses' Perspectives, were written after a series of interviews with patients and an online survey with nurses, and lay bare not only the reality of how treatment rationing affects patients and nurses, but also the stigma, fear and isolation still felt by many people living with hepatitis C.
Key themes of the reports include:
· Hepatitis C patients continue to encounter stigma as a result of myths and misinformation around the virus, including among some health professionals.
· Opportunities to test people for hepatitis C continue to be missed, with many health professionals having a low level of awareness of hepatitis C. As a result, many patients are diagnosed many years (and often decades) after first becoming infected.
· Additional ‘wrap around’ support is often not available to patients, with many lacking the counselling and/or peer support that they feel is required in order for them to come to terms with their diagnosis.
· The on-going treatment cap is having a significant impact on patients, with some being told they face indefinite waits before they are able to access new curative treatments; waits that can cause severe psychological distress. Some are even taking matters into their own hands and purchasing generic drugs online.
The reports are being launched in Parliament today, at an event hosted by Baroness Randerson (Co-Chair of the APPG on Liver Health) that will bring together parliamentarians, patients and nurses to discuss the findings of the reports and the steps required to eliminate hepatitis C.
Charles Gore, Chief Executive of The Hepatitis C Trust, said: “This report demonstrates the challenges still faced by people living with hepatitis C in England, most notably the on-going restrictions on access to treatment. If we are to eliminate hepatitis C by 2030, as the Government has committed to, it is essential that we make these curative treatments available to all, and that NHS England, the Department of Health, and Public Health England commit to working with patients organisations and the clinical community to develop a more ambitious, dynamic response to the challenge of hepatitis C.”
Fiona Fry, Chair of the British Association for the Study of the Liver (BASL) Nurses Forum, said: "The Nurses' Perspectives report highlights some of the challenges that nurses face as we seek to move towards the elimination of hepatitis C. We are now treating and curing more people than we have before, but there are still a number of obstacles to overcome as we seek to ensure that everyone has access to hepatitis C care and treatment, including ensuring that we are able to test and treat key at-risk groups in community services."
Both reports can be downloaded below.