Professor Chloe Orkin, Chair of the British HIV Association (BHIVA) and Consultant Physician at the Royal London Hospital, outlines the challenges of delivering HIV services and discusses BHIVA's work in reviewing the standards of HIV care and advocating for better HIV services.
This presentation was recorded at our conference on The future of HIV services in England on 25 April 2017.
Thank you very much for the opportunity to speak and it’s an even bigger opportunity than I realised after listening to today’s discussions and how absolutely fantastic they’ve been.
In terms of my invitation to speak I’m not a policy maker and I’m not somebody who works for PHE or NHS England, I’m a clinician from the Royal London Hospital and I am the elected chair of the British HIV Association which means that I speak for other people just like me, doctors at different hospitals, nurses, members of the community, junior doctors. So this is the only perspective that I’m able to bring to the meeting so that's the perspective that I’m going to bring.
So when we think about the future of HIV services for those of you who can’t decode the picture it’s a few little zebra trying to cross a river through some crocodiles. Being South African it seems a very obvious image to use, but I think in terms of the future of HIV services sometimes it can feel like that. We’re trying to negotiate very, very difficult waters at the moment and many times we’re doing this on our own, okay, or following behind somebody but not very well represented and as we know there are enormous challenges to delivering HIV care, a lot of them have been mentioned today, and this is certainly not an exhaustive list, this is a very small number of challenges, issues that range from changes in our curriculum to trainee vacancies, dislocation of services are secondary to the health and social care bill, more social and political issues such as criminalisation of HIV, a recent decision to share NHS record demographics with the Home Office, issues around condition of PrEP and then the issues that affect clinicians like me which is little money or time to attend conferences to develop my education.
We’ve been talking at a macro level all day but my perspective I’m afraid is a micro perspective and in terms of the King’s Fund report it’s an amazing piece of work and it talks a lot about what larger bodies should do and what they could do to try and improve things such as PHE, Department of Health, NHS England, Health Education England and in terms of local services.
So a lot has been said about macro politics and I can’t say much more than what has already been said because it’s all been said so eloquently and with such a lot of insight, but as a job in clinician I understand this affects my daily ability to work as it does the ability of other people and this macro politics affects us as clinicians in terms of our ability to deliver things like PrEP, like HIV testing and the question is could professionals advocate more effectively on policy than we currently do? Okay, can organisations like the British HIV Association, like the British Association for Sexual Health what can we do separately and together to try and advocate more effectively on policy to bring our professional voice, the voice of clinicians, into the policy domain?
So I guess the question is in my view this is what we should do, okay, we need to try to unite to get across this difficult river together and try and find ways of making it out and it’s an obvious analogy but it’s really what I believe is at the heart of the way forward.
In terms of our own organisation in terms of BHIVA we are engaged with a number of different activities. What we are undertaking at the moment is we’re trying to review the standards of HIV care, we’re looking at guidelines, I’m sure BASH is of course doing exactly the same looking at other guidelines, putting on conferences and we are doing audits and we’re also trying to advance the way in which to deliver education through apps etc etc. So this is our run of the mill work, this is our bread and butter, this is what we’ve always done as an organisation.
The question is how might we adapt to advocate for better HIV services and our traditional structure has involved a number of subgroups to deliver guidelines, audit, education and conferences but we’ve this year developed a new subgroup which is external relations and that is to deal exactly with policy issues, and it’s really to look at what should we say in terms of the traditional media, how do we improve our spokespeople, how do we improve the responsiveness, the speed of our social media responses, develop dynamic content to Facebook for example because some people use that to try and make it come alive? How do we invigorate our organisation to try to engage the membership to try and bring people in to feel as though they belong within this organisation, to feel a part of this organisation, to champion and to recognise the good things that have happened, our longstanding relationship with each other, with the community, to develop Instagram accounts looking at photographs, to try and come together and cross the river basically?
So we’ve been trying to engage and as I said to you this is a micro perspective and it’s going to look like a micro perspective to all of you who have been listening today by people who are making public policy for the whole nation and here I’m telling you about the BHIVA response to the Medical Protection Society article on HIV testing. You might be thinking oh my goodness, but the important thing is we’re not NHS England, we are clinicians and what we can do is we can respond to things that are not okay, that we as professionals can react to, issues which are … for example this article which was written by an advisor to the Medical Protection Society. Now the Medical Protection Society are incredibly influential, they provide the indemnity for all doctors across the UK – well, those that aren’t with the other organisation – and essentially they published an article about HIV testing, exercising caution and citing ethical dilemmas, cultural sensitivities, occupational consequences and this was exactly in response to the NICE guidance suggesting that every person should have a test. If they have a prevalence greater than two per thousand in their population they should be tested if they come in because they’ve stubbed their toe. Instead of which we were listening to arguments about cultural sensitivities.
So we were involved in a strong antithetical reaction and there were hundreds of Tweets, but more importantly we were able to try and create a space for our voice on HIV testing on this occasion and this facilitated the ability to go and meet the Chief Executive of the Medical Protection Society to try to work with them in the future. We’re going to be writing cases to go out in their publications about testing, about HIV issues, we’ve raised issue around criminalisation. Hopefully we’re going to open the door. It was a very unfortunate event, it was upsetting when I saw an article I was absolutely incandescent, but the important thing is it gave us the opportunity to say that.
On International Women’s Day we were able to engage with colleagues in the community and develop an educational campaign on Twitter with hourly Tweets with links to educational articles and also championing people’s stories such as Silvia Petretti spoke up about her story.
So I think really it’s about creating an audience and actually BASH has probably a more sophisticated public and media facing approach than we’ve ever had and they have a very quick responsiveness, but the question is about how we as organisations in our own ways and sometimes together can try and push the voice of the oppressional forward.
So today we’ve heard a lot about STPs and the question is … if you forget all the text, I’ll just talk about the first point first. So in terms of STPs those people who have engaged with STPs, okay, with sustainability transformation plans, understand what it involves to be at that table. I’ve never been to one and I sat in the audience putting up my hand and asking Simon Barton, “So how can we develop a toolkit for clinicians? So if we go what should we say?” and all these sorts of questions and the trouble is once you understand a certain strata of the hierarchy you forget that other people who are a strata down don’t actually understand what is happening and I don’t understand this. So Elizabeth Kahn and I were sitting there together and we said to each other, “Maybe we should look to develop together some frequently asked questions for members on how to engage with this process, how to get ourselves to the table and if we do get to a meeting what should we actually do at that meeting?” because I wouldn’t know even if I got there.
For example it is opportunity for collaboration to develop campaigns, it’s 30 years since the original Iceberg campaigns, what are these opportunities? I’m not saying these are things we’re definitely going to do but I’m saying these are things we could do, these are things we could think about as organisations and not just be the own contributions in their own areas that they may wish to develop and I’m speaking as a professional who works in an organisation.
Obviously in organisations we represent on the CRG this is an opportunity for us. They are regional representatives who come from all the different parts of the UK but then there’s me from BHIVA and there’s Laura from BASH and we are not representing the regions and I think perhaps today I understood for the first time when I go there I am representing the members of my organisation and therefore I need to know what the views are in my organisation of what are the problems to bring to the CRG. I'm not just there as another person at the table and it’s important that we need to use online tools to educate on policy at our national conferences to give people the facility and the ability to understand.
I write a newsletter trying to talk about issues that affect BHIVA members, my perception is that about three people read it but nonetheless I try very hard to write about it and particularly about the policy issues. The policy issues that are occurring in terms of clinicians and how to deal with them and how to understand them and what to do if they happen to you and I think perhaps this is part of the thing that we as clinicians can contribute to the table.
So I’m very open to ideas, I think anyone in this situation would be very open to ideas from the membership to try and understand what people think, what people want so I think that’s pretty much all I’m going to say at this point, but I'm happy to take questions at any stage.