Marie Curie and Terrence Higgins Trust create new HIV resources

Two PIF members have joined forces to create resources about end of life care for people living with HIV. Terrence Higgins Trust and Marie Curie partnered to create the resources across multiple formats, aimed at addressing specific challenges, stigma and misinformation. The resources provide support and guidance while trying to help with questions, concerns or wishes about the end of life. 

There are several online information pages covering topics such as telling health and social professionals you have HIV, taking HIV medication towards the end of life and planning for the end of your life while living with HIV. There is also plenty of advice about making plans while you are well enough, choosing someone else to make decisions on your behalf and planning for future treatment and care.

The resources also include: 

• A booklet for people living with HIV who may be having, or thinking about, end of life care. It explains their rights as a patient, how to manage medications towards the end of life and where to get support. It also has a space to record end of life care thoughts and wishes.
• Videos including personal experiences of HIV stigma and discrimination and discussion about what making plans for end of life care might involve and why it is important to plan ahead.
• A video answering questions about medication such as "should I keep taking HIV medications if I’m having end of life care? What happens if I physically cannot take my medication?"

Collaboration is essential 

The series of resources are based on research done in partnership between the Terrence Higgins Trust and Marie Curie. The charities also co-produced a report exploring the challenges and desires of people living with HIV towards the end of their lives. 

Louisa Dreja, Community Engagement Officer at Marie Curie, said: "Collaboration is essential when creating information and support for people with specific lived experiences. By bringing together our respective expertise and understanding, and involving people living with HIV right from the start, Marie Curie and the Terrence Higgins Trust have been able to develop resources that meet distinct needs. This kind of partnership strengthens our collective impact and ensures that the people who need us get guidance that is informed, relevant, and respectful of their individual circumstances."

Find all of the resources via the Terrence Higgins Trust website here.