Background
Fast-Track Cities London is a partnership between the NHS, London Councils, third sector, public health, the Mayor of London and people living with HIV. Fast-Track Cities is a global movement to end HIV by 2030. London is already leading the way in diagnosis and treatment but is now aiming to be the first city in the world to end new cases of HIV.
In 2020 we launched a HIV improvement community, which consists of 12 initiatives between 9 NHS hospital trusts and 22 voluntary and community organisations. The HIV improvement community is working towards the common ambition of ending new cases of HIV, preventing unnecessary deaths and ending HIV stigma and discrimination in London – Getting London to zero. The improvement community work as a learning network using Quality Improvement methodology, training and evaluation, to share their skills, information and experience.
Ambition
HIV remains an important problem in London, impacting Londoners more than any other part of the UK.
In 2020, there were 1,510 new cases of HIV, with an estimated 39,630 people living with HIV in London – almost 40 per cent of all those in the UK. Over the past 10 years, London has seen a significant fall in people newly diagnosed HIV positive, particularly in men who have sex with men.
However, this fall is neither uniform across all population groups nor in all areas of the city, and rates of late diagnosis, remain stubbornly high at 38 per cent. Late diagnosis significantly impacts people who are who are disproportionately affected by HIV like African, Caribbean and migrant women, trans women, gay men living with HIV who are also migrant men, men of colour and men who don’t have English as a first language.
London aims to be the first global city to get to zero new HIV infections, zero preventable deaths, zero stigma and discrimination, and the best health and quality of life for people living with HIV.
HIV services are excellent in London, but we knew that in order to get to zero we needed to do things differently. London needed to fully embrace the success and expertise of the HIV voluntary sector and people living with HIV.
In January 2020 London launched the 12 HIV improvement community projects that were awarded grants from the Fast-Track Cities HIV improvement fund. The fund, which launched in October 2019, offered grants to tackle HIV testing, ensure more people with HIV stay on treatment and support more people with HIV to live well. The fund was a £3 million investment over three years, the money was from NHS England London. We designed a procurement methodology to eliminate bias and level-up the playing field for community organisations that were closest to those we needed to improve care for.
The HIV improvement community projects operate through 12 partnerships between clinics in 9 NHS hospital trusts and 22 voluntary organisations.
The successful projects support the more complex, vulnerable or marginalised groups; immigrants, homeless people, people with substance misuse issues, people from Black and minority ethnic populations, women, younger people, people who are socially isolated and various faith groups.
The voluntary organisations lead the projects and are supported by Fast-Track Cities London Leadership Group through:
- training and evaluation
- using a Quality Improvement methodology
- ongoing sharing of skills, information and learning as an adaptive network
- focus on the whole person and not simply on health conditions.
Full descriptions of each project with their partners, target groups and what they are doing are here.
Outcome
The HIV improvement community has tested over 4,600 people across London for HIV. They have found 15 new cases of HIV and over 750 people are now receiving post diagnosis psychosocial support and are reporting feeling less isolated, lonely and more confident. There has been a 9 fold increase in referrals from doctors and nurses into peer support services, which help to keep patients on treatment and keep their HIV undetectable and therefore untransmissable. Over £1m in benefits has been identified for people living with HIV through the projects, contributing to improved quality of life. Finally, over 500 people are accessing holistic care and support planning, resulting in 75% of people now being undetectable for HIV, which means they cannot pass HIV on.
The peer support projects (Metro, Positive East and Positively UK/Plus Health and NAZ delivered by people living with HIV working with Kings, St Georges, Chelsea and Westminster, Barts and Barking NHS Trusts) have found that working directly within the NHS trust multi-disciplinary team has increased the number of people accessing peer support 9 fold. So far 265 patients have had peer support and over 1,000 hours of support sessions have been offered. One charity has reported that 68% of the people they have started seeing now have an undetectable viral load which means they cannot pass on HIV anymore.
Furthermore, over £1m in benefits has been identified for people accessing the projects, 5 people have had debt written off and 29 were rehoused. All of these are indicators of a big improvement in quality of life for people living with HIV.
The GROWS project will have trained 36 women by the end of May 2022 to be peer support workers supporting women who are over 40 and aging with HIV. The stay and play project are supporting 18 mums and children living with HIV with 100% of the women finding the sessions useful and educational.
Change Grow Live are working with 70 drug and alcohol users with HIV and 92% of them are now undetectable. Furthermore, the project has increased the number of people with a HIV status recorded from only 50% to 95%.
The Live Well project has provided over 2,500 hours of counselling, hypnotherapy and coaching to 235 people living with HIV across 30 London boroughs. So far 77% felt more connected and less isolated and 87% felt their confidence had improved. Also, 48% said their physical health had improved. 53% of people were from black and minority ethnic backgrounds.
The Volt project is training staff in homeless hostels across London about HIV, HIV testing and accessing services. So far, they’ve also tested 267 people in hostels and given out 300 leaflets.
Doctors of the world run a targeted clinic for undocumented migrant populations and have tested 150 people. No patients have tested positive for HIV yet, but they have found high levels of other STIs often present with multiple issues and are signposting people into other Doctors of the World services.
GMI’s mobile HIV testing bus reaches areas in London with identified high migrant communities. They have tested over 2,000 people and educated these communities about HIV, the importance of testing, U=U (undetectable=untransmissible) and PrEP medication to prevention HIV transmission.
Faithworks aims to normalise HIV within faith settings and has talked to 50 faith leaders and sent packs out to a further 80 faith centres. They’ve now run 10 training sessions and one Jewish community organisation has begun a review of their centres, youth groups and schools to tackle stigma and discrimination.
Finally, the Black African people living with HIV from the Positive Champions project have produced 15 stigma busting videos, which have now been viewed over 100,000 times and resulted in 850 test being sent out and 1,300 in person tests.
Spread
As new infections reduce, they become harder to find, so the partnership work is continually adapting and evolving our strategy, tailoring our efforts to new groups and needs, in order to find the last 2,000 cases of HIV in London and end the HIV epidemic.
Shared learning has been an almost constant and it continues. Within the first week of the HIV improvement community going live, we had shared all the funding documentation and our ways of working online with other UK and international Fast-Track Cities for clinicians, project managers, politicians and other cities – as well as created web pages and shared these widely to partners across the world via social media and direct contacts.
Within the first two years we had presented to four international conferences, with a further three planned for this year. We’ve produced a case study and film about the projects and the HIV improvement community way of working, that other cities across the UK and world can learn from and replicate in their journey to zero HIV.
Once the projects were up and running, Fast-Track Cities London ran two online webinars attracting over two hundred delegates. The focus was on running an improvement community to tackle major issues within a city working across the NHS and voluntary sector. We’ve also created information materials to share with other organisations via social media, WhatsApp groups, bulletins, meetings and websites.
All the above work supports the efforts, not just in London, but also nationwide and internationally to tackle HIV infections, stigma and quality of life for people living with HIV.
The projects are now producing toolkits and best practice guidelines for others to follow. We are working together in partnership to highlight to commissioners across London the value of the work the projects have been doing and supporting them towards a long-term sustainable future.
This way of working between the voluntary sector and the NHS through an improvement community, could be the blueprint for other long-term conditions to incorporate the third sector into treatment pathways. Therefore, the partnership is now planning an evaluation which will be shared with clinicians, ICP boards and internationally with other cities. We are also planning a showcase event for Tuesday 27 September 2022 to share the work with the rest of the UK, potential future funders and internationally. Email hlp.londonftci@nhs.net to find out more.
Values
It is difficult to accurately establish precise figures (lifelong HIV costs vary between £73k and £404k) but the projects have delivered significant return on investment.
The actual lifetime cost of treating someone for HIV will vary depending on the year and their age when they were diagnosed, whether they were diagnosed late, whether they developed any AIDS-related conditions or other co-morbidities, when treatment was started, and which drugs were used, amongst other things.
By taking testing to underserved communities where they live and work, rather than waiting for them to access NHS services with symptoms means we have diagnosed 15 people and ensured that they are on medication and support.
Treating people for HIV as soon as they are diagnosed means they are more likely to stay healthy, thereby generating fewer treatment and care costs. And because HIV treatment prevents onward transmission of HIV, it also helps to avert the costs of more people acquiring HIV.
There is huge value in the peer support service being part of the multi-disciplinary team in clinical services, as demonstrated by the 9 fold increase in take up of peer support leading to more people being engaged with HIV services, on treatment and becoming undetectable. This is keeping people healthy, avoiding hospital costs and preventing further HIV transmission.
The work that many of the projects are doing with targeted minority communities is critical to building trust. For example, for Doctors of the World with undocumented migrants and other professionals working closely with these very vulnerable people.
Involvement
As described in detail above, Fast-Track Cities London HIV Improvement Community has involved partners from the third and statutory sector and at all levels. Secondary care NHS clinicians are now working directly with peer support and outreach workers from the third sector. Partners from the GLA are working alongside the NHS and London Councils to guide the work of the HIV improvement community supported by public health expertise from UKHSA and OHID.
People living with HIV were not only instrumental in co-designing the HIV improvement community right from the start, but in some cases they are now running many of the peer support elements of the projects and employed by some of the third sector organisations.
Fast-Track Cities London convenes and hosts a community advisory group with 15 people living with HIV. This group supports the development and delivery of the partnership’s workstreams as well as serves to identify strategic issues and ensure that these are addressed in the Fast-Track Cities London Leadership Group.
We’ve involved wider communities too, engaging with faith leaders from different backgrounds and training them to talk to their congregation and peers about HIV. This year we are making videos with faith leaders and other communities so the work can be shared even more widely across London.
To find out more about working through an improvement community approach email us at hlp.londonftci@nhs.net.