Bloomsbury Patient Network

Day Four – AIDS Conference Melbourne

Day Four – AIDS Conference Melbourne

Good morning/evening/whatever time it is there!

Wednesday was my busiest day as far as my own involvement in sessions was concerned, as I was set to speak in a morning and afternoon session. The day started messily, after some initial confusion about room locations, but the first event was a discussion session on user-driven care, which I’d been invited too because of my work as first paid Patient Representative at the Bloomsbury Clinic and Chair of the Patients Network. It was a multi-national/agency meeting to explore different models of clinical service provision for people living with HIV, looking at how user participation and empowerment is critical for the kind of service models that will be successful in the aim of ‘getting to zero’.

Dr Ole Rysstad opened with experience of what happened when his clinic asked patients how they would organise the clinic if it were up to them. Following the consultation, the patients have been actively involved the formulation, governance and implementation of the project, in terms of decision-making and ownership. A crucial part of the project was providing training courses for patients to get them up to speed on how service delivery happens, so that they can make fully informed choices. I know from my experience that to suddenly be thrown into a senior management meeting without knowing what a PCT was at the time, was a very bizarre and unsettling thing, so I’m fully behind the idea of upfront training. The new model has flipped the doctor-patient, top-down approach by making the HIV Coordinator the person who coordinates the care, leaving only clinical duties to the doctor and being the patient’s guide for the service. They map patient needs and draw up an individual care plan and follow up where necessary. The results show a better and more cost-effective care pathway, as it better uses time, resources and money. It also improves the social network of patients as they are linked into social and peer support, as well as showing improvements in STI and serious health problems because of earlier interventions.

This was followed by a presentation from the Ukraine, which has faced very different issues when trying to put together patient-led services. Although the Ukranian Network of Positive People had managed to put together community-led projects, the unwillingness of the local clinical services (and more importantly, government) to take a collaborative approach meant that for every success they had in engaging patients in their care, they were blocked and blocked again in providing support.

The UK perspective was provided by Dr Tristan Barber, who spoke of the peer navigator system that is at the Homerton Hospital, where he currently works, but focused mainly on his experiences when working at the Mortimer Market Centre, of the Patient Rep and Network support in-house there. His enthusiasm for including much stronger patent-led care related to both the ease and comfort of patients having peer support in house as well as the clear costs savings that are created by such a model. He cited the Bloomsbury Clinic as being the most cost-effective service in London with some of the best outcomes and retention in care, due to the wrap-around services it provides. He was very clear about the fact that in his opinion, the Bloomsbury Clinic model was the gold standard for the UK, as far as inclusive and patient-focused services are concerned.

The practical presentations were followed by spokespeople from the World Health Organisation (WHO) and UNAIDS who compared and contrasted the differences in Western and Eastern Europe (where patient involvement is often discouraged), while highlighting that similar patient-led approaches are more common in some of the African countries where services are poorly funded and task-shifting has become a useful way of prioritising health-care professional’s time to meet the clinical needs, while the support and softer care is delivered by peers. The open discussion that we had was useful in highlighting the need to take things forward in a systematic and well managed process, as there was general agreement that good practice needed to be shared more widely and collaborative work done in order to strengthen and improve local, national, regional and global systems. The WHO are looking towards a more public health-driven prevention and care package, and the idea of user-led services is a very good fit in moving this forward. UNAIDS intend to request the WHO to change the top-down medical approach in all areas and to put the patient at the heart of everything they do. There was an agreement from the major players/funders to continue the discussion, so the group will stay in touch and plan further conversations and meetings to advance this work, which I loo forward to being involved in.

The afternoon session was on criminalisation of HIV transmission/non-disclosure across Europe and was made up of a panel of 10 contributors from different countries. The issue was flagged up as being a distraction from the real work needed to be done in relation HIV (prevention, testing and care), but that it was necessary to engage with the issue as it has clear ramifications on all those areas if it continues in the way that it has done.

I was speaking for the UK (though there was a second speaker discussing Scotland, as their laws are slightly different in criminalising potential risk, making non-disclosure a problem North of the border). The overall picture showed variation from the relatively good relationship that we have in the UK with our Crown Prosecution Service (CPS), following much work by THT and NAT to highlight and campaign on the issues, over to the woefully deteriorated situation in Greece, whereby ‘high risk’ communities such as sex workers are being arrested on the strew, forcibly tested and incarcerated! The processes of engagement with the legal system have produced some good results elsewhere, with the Swiss statement providing some technical back-up when there are cases of non-disclosure where the positive person is on effective medication with an undetectable viral load, but a lot more work is clear needed to address wider issues of increasing numbers of prosecutions happening (most often between heterosexuals). It does seem as though heterosexual prosecutions happen more, potentially because this group do not see themselves as being at risk of contracting HIV, and potentially feel more need to be ‘avenged’ of the injustice within the criminal justice system. For example, in the UK, 73% of complainants in prosecutions are caucasian women, whereas no African woman has ever tried to take out a case and gay men account for 13.6% of complainants, which is a very low figure when you consider that we are the group most likely to contract HIV in the UK.

One thing that was relatively common across the board was sensationalist media reporting of prosecutions, with misrepresentations of people ‘intentionally’ infecting others, which is definitively not the case, or even the charge that has been brought. Working to influence and inform the media was seen as being a priority for all present apart from the French, where strangely, prosecutions are on the increase but media interest has declined dramatically. Another major anxiety expressed by delegates was the rise of right wing parties across Europe, with great concern that if gaining power, we would see increasingly harsh laws and penalties, especially in relation to migrant populations.

One of the most useful solutions suggested was the kind of work that THT did with the CPS in the UK, providing briefing documents and guidelines so that only cases that potentially justified prosecution would come to court. The Netherlands is currently ahead of everyone else, however, as after taking this approach and removing these laws from the statute and effectively stopping prosecutions of HIV transmission. All were more in favour of a public health approach to HIV transmission, which factors in the kind of support, counselling and behaviour change interventions which can potentially allow people to go on to live healthy and productive lives rather than ending up in prison.

The rest of my afternoon was spent at the European Networking Zone, where the various county representatives talked about how we link in more effectively and support greater collaborative working across national boundaries. IT is often these kinds of discussions and connections that prove to be the most useful part of conferences such as these, and I will certainly be coming home with some new allies and colleagues to share information and resources with.

I will update you all again tomorrow – I hope you’re all enjoying the sunshine I see you are continuing to have in my absence! Cool


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Richard, London

Thank you for sharing your time, knowledge and experience and courage with us!

Mohammed, Westminster

Thanks for giving me back my life and thanks for giving me hope. From now on I will be seeing my life differently. Thanks for everything over the last three weeks it has been a great course.

Ola, 43, Bow

May I take this opportunity to thank you for your time, support and more importantly faith that we can embrace our HIV status with a degree of confidence and pride

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