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Power, participation, and change – whose responsibility is it to improve the lives of Londoners living with HIV?

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HIV Improvement Community leaders and advocates.


The following blog was written by Bessie Bulman, a Transformation Partners colleague working as a Project Officer for Thrive LDN, a pan-London mental health initiative. 

Why do we ask people to share their stories? Is it for personal interest? Professional development? Meaningful change?

These are questions that were on my mind as I engaged with more than 90 Londoners living with HIV, learning about their experiences of life, their condition, and how it affected their mental health.

Over the course of 2022, Thrive LDN worked in partnership with the Fast-Track Cities Initiative in London to carry out a participatory action learning and research project to develop a deeper understanding of Londoners living with HIV’s mental health and the factors which influence. We engaged with people across London to better understand how their mental health and wellbeing is impacted by living with HIV.

We wanted to understand more about life in London living with HIV, find the levers to challenge current statutory service provision which relate to people living with HIV’s mental health and wellbeing, and influence change and innovation in the way services are provided, ultimately so they are more effective, efficient, and sustainable.

This project made it clear that the good intentions we entered this work with were not adequate in the face of an oppressive and multi-faceted system which creates unjust and unequitable experiences for those living with HIV. In conducting focus groups, surveys, and interviews, we heard a resounding anger, frustration, and fatigue from these individuals with professionals coming in to gather their insights and no change happening as a result.

Here’s one anonymous example from a participant and person living with HIV:

“It’s vital that people living with HIV are consulted because we are the service users. Our voice needs to be heard. When I was diagnosed, I went through the full cycle of ‘grief, anger, shame’ and felt very alone, even though I thought I was pretty clued up about HIV. Our views need to be heard to ensure services are effective, caring and compassionate.”

The act of telling their story can be traumatising in itself, and with no meaningful transformation occurring within the system it is understandable and perhaps expected that communities may react with some trepidation at the thought of repeating themselves.

The challenge we face

This brings me onto a challenge we, as professionals, researchers, and changemakers, must face head-on:

How do we avoid empty promises of change? How do we tackle the current power imbalance and ensure health and care providers better protect and care for marginalised and disadvantaged groups? What is the opportunity for meaningful service transformation and how can we be the ones to demand it?

My answer to this is simple. A participatory approach is essential to shape actions which could be implemented where they are needed. It is our duty to break the chain of insights gathering, report publication, and no action taken. We should aim to get people around the same table to discuss action-oriented findings that bring about structural transformation and solutions, rather than the avoidance of responsibility and ownership over change.

Although the answer may be simple, achieving this means challenging the system quo, which can often feel like pushing back the tide. The conflict here is between us knowing the problem, and knowing the solution, but unsure on how to get from ‘a’ to ‘b’ in a way that is empowering and sustainable.

The following quote is taken from the Children and Young People’s Mental Health Listening Project Report in which Dr Jacqui Dyer, Thrive LDN co-lead and Mental Health Equalities advisor for NHS England, speaks about the power of sharing insights to generate change. My hope is that we take these words as a call to action, getting the right people around the table with the power to transform our care, utilising the stories and voices trusted to us from those communities we aim to serve:

‘This work represents the beginning of a conversation. I hope that you can fully engage with its honesty and are inspired to take action to implement the recommendations that emerged from the experiences and ideas put forward by the […] people and community organisations involved. […] have spoken and invited us to work with them to achieve positive change. The question for us all is whether we will seize this opportunity, commit to our personal growth, and be open to working collaboratively to rethink what is needed to build a health system that works for [them]. Most importantly, we must move from speaking about prevention towards taking action that ensures […] people from communities who are often marginalised are protected, nurtured, and live in an environment where they can thrive.”

Looking ahead

My hope for the future is a joined-up system that is supported by professionals who are empowered to make community-led change, listening to stories that are shared with us and taking those insights further into action. In doing so, we will better enable those people who trusted us with their stories to lead happier and healthier lives.

In terms of this project specifically, I asked the following question: What are we going to do differently to ensure that the experiences and opportunities for good mental health and wellbeing of the people living with HIV who took part in this participatory action project, and many others like them, are improved on?

The solution to this is well-known and can be achieved. Through joined-up care, we can enable a workforce that is:

  • Informed on the psychosocial model of mental health and wellbeing;
  • Knowledgeable around the conditions affecting people living with HIV;
  • Aware of stigma and work to prevent it;
  • Able to empower those living with HIV to lead healthy and happy lives.

Specifically, this means:

  • Specialist training and education around HIV for all healthcare professionals – targeted first towards primary care, mental health, and dentistry
    • Including increased knowledge around HIV medication interactions and HIV progression symptoms
  • Holistic, person-centred care within primary care and mental health provision, looking at the root of the problem before prescribing medication
    • Involving social prescribing where appropriate
  • Better joined-up care and communication between professionals who are knowledgeable of available services and pathways
  • Increase funding and provision for peer support workers who can act as a bridge between the NHS and voluntary sector
  • Support for people growing older with HIV – specific services and a community of practice around wellbeing and ageing
  • Education and empowerment work done within specific communities who are at higher risk of HIV, in order to reduce stigma and encourage social cohesion

These thoughts, suggestions, and recommendations have been shared by people living with HIV and the professionals that support them, telling us in their own words and based on their own lived experiences, the changes they want to see from services.

Building a coalition

We must consider building a coalition of shared interests to leverage total system change. This gives us the best chance for a fairer future.

I hope these insights will motivate services and changemakers to consider how and where changes can be made as they consider the next steps to implement the recommendations resulting from this piece of work.

As Silvia Petretti, CEO of Positively UK and living with HIV herself, said recently about the #FightHIVStigma for London Pride 2023:

“One of the most important things for us at Positively UK to make sure we can end stigma, is to make sure that people living with HIV are visible and heard. That we provide opportunities and support, so that ‘us’, as people living with HIV can challenge stigma and be seen at the centre of our communities as a resource. Something that is vital to create a more just world for all of us.”  

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