ENDING STIGMA
Working together as a city to get London to zero HIV stigma.
Despite all the advances in clinical care, we know that for people living with HIV life can be difficult because of the stigma associated with HIV.
HIV stigma is often based on outdated ideas and made worse by discrimination in other areas like gender, sexuality or race.
We know that in order to get us to zero new cases of HIV, zero preventable deaths and 100 per cent of people living well, we must fight stigma. We have to work together with people living with HIV, the voluntary sector, doctors and nurses, the Mayor of London, London Councils, NHS England (London) and public health experts.
In 2019, the Fast-Track Cities London Leadership Group set up a stigma working group to look at the current evidence on stigma, review existing work and draft an action plan. This stigma group had a range of people on it from the voluntary sector, statutory agencies, the NHS, local councils, academics and people living with HIV.
The stigma group described three key areas we need to focus on, addressing internal and external stigma at the same time. A joint focus on these areas will speed up London’s response to ending stigma.
In December 2019 the stigma group shared the draft action plan and asked for feedback. We heard from over 100 people and agencies about what London should do to end the stigma around HIV.
The three key areas we proposed to tackle together as a city are:
Internalised stigma: We will create a course outline. The course will be adaptable for different communities, cultures and contexts. We will develop the course with HIV organisations and people from the community. We will then invite organisations to bid to deliver the course to the people they serve.
Stigma in the NHS and other public services: We will commission an organisation to create an HIV-friendly charter, working with representatives from the HIV community, NHS and London boroughs and the voluntary sector. We will pilot the charter in a few NHS organisations first to test and develop it before we role it out across London.
Stigma in society: We will commission a survey to set a baseline on the public’s knowledge and attitudes towards HIV. We will use this data to design work to tackle stigma and discrimination in London. The stigma group will invite organisations that run existing campaigns to get involved.
Read the stigma proposals for London following consultation here:
Updated stigma plans for London March 2020
Work during the COVID pandemic 2020/21
Following a pause during the first five months of the Coronavirus pandemic, we reconvened the stigma group in August 2020. The stigma group reviewed the proposals to make sure they were robust and appropriate for a post-COVID London.
What have we done since 2020
- Stigma in society: we commissioned the National AIDS Trust and BritainThinks to work with the HIV community to develop a public knowledge and attitudes survey. The survey results were published in July 2021. Read the national public knowledge and attitudes survey results and results for London on our website. We are now starting work on campaigns to tackle HIV stigma in society based on these findings.
- Internalised stigma: we brought together a community of practice from the voluntary sector, to create a framework for an empowerment programme to tackle internalised stigma. In October 2021 we launched a fund for the voluntary sector to deliver these empowerment programmes. In March 2022, we launched six new projects that will run empowerment programmes to tackle stigma with people living with HIV. Read more about these projects here.
- Stigma in organisations: we are working with two London hospital Trusts on plans to tackle stigma in the NHS. We are supporting them to roll out a survey to staff on knowledge and attitudes towards HIV. Following the results, we’ll look to develop a training and development package about HIV, stigma and discrimination and Undetectable = Untransmittable #UequalsU.
This feedback shaped the stigma proposals for London, which are published here:
Stigma plans for London March 2020
You can read more about the feedback process here:
Appendix A: How did we get feedback
Appendix B: Summary of what people told us
Appendix C: Results of fact finding survey on what work already exists in London
We want to keep everyone up to date with this work and need people to get involved, so please email us at hlp.londonftci@nhs.net.