Shilpa Ross speaks to Robert James, Mel Rattue and Jane Shepherd, three people living with HIV, about what ‘involvement’ means and why it matters.
The King’s Fund is committed to listening to people with lived experience of our health care system. We have been reviewing HIV services in England to develop policy and planning recommendations for the next 5 to 10 years. It is common practice for our reviews to involve a broad range of stakeholders. It is less common – but no less important – for us to directly involve people with lived experiences in the design of our research and in influencing how services may need to change.
Today is World AIDS Day. For some, this day will inevitably bring memories of the lives lost to HIV. But, in 2016, much has changed and many people living with HIV have a ‘normal’ life expectancy. Now, it’s not about dying of AIDS, but living with HIV.
Below, we ask Robert, Mel and Jane to explain why the experiences of those living with HIV should be used to develop policy and planning recommendations.
Why is it important to involve people living with HIV in this type of work?
It can be very difficult for people to be open about their HIV, which means they can be ‘voiceless’. But, collectively, you can make change happen.
The Denver Principles adopted in 1983 and the ‘GIPA’ principle (greater involvement of people living with HIV) changed the response to HIV to one that is rights-based and one in which people living with HIV are self-empowered and involved in all decisions about their health care. We should have a seat at the table, but it is hard to find the table in the complicated maze of the NHS.
In any kind of policy, you should involve the people that are affected by decisions. It’s important to have the opportunity to share, because there is no other stigmatising long-term condition quite like HIV.
What's important to you about the work we're doing?
Following the Health and Social Care Act and austerity measures, the system is not working for people living with HIV. Everything has changed but people with HIV aren’t really involved. We need to find a way forward.
Being involved in The King’s Fund review is important because we want system leaders and service planners to understand the nuances of what living with a stigmatised long-term condition means. We are a diverse group of people with very different needs. We can be anywhere on the treatment and life continuum. We are also ageing with HIV and have increasingly complex health needs. Systems need to be flexible and robust enough to ensure that they can respond to these complexities.
What does good involvement look or feel like?
For me, meaningful involvement is being given the chance to reflect on my experiences, ideas and opinions, and having the time to discuss them with people who are going to listen and are able to influence policy. It’s not about being given a one-off chance to speak, but about being part of the process. ‘Involvement’ is when you feel you’ve been heard and you’ve been given the opportunities and options to have your voice heard. Involvement is feeling valued. That’s why The King’s Fund review has been great; we’ve been involved in every stage of the research process.
Policy and planning decisions should always be a negotiation with the people affected. It’s about having your voice heard. And if your views are rejected, there should be a reason for it that is communicated back to you.
Over the past few months, Robert, Mel and Jane have opened our eyes and ears to the challenge of being at the centre of a very complex health and care system. They have made us think about everyone’s role in ensuring the best quality of life possible for people living with HIV. It is important to us that we work together to develop recommendations that resonate with people with lived experiences of HIV services as well as the policy-makers.
We will share our recommendations at a conference in April 2017.
I would like to going into more detail about this, we have a website http://www.hadsupport.uk/.