So good morning everybody and thank you very much indeed for the opportunity to just talk a little bit about the research project that we have undertaken and the report that is being launched today. It’s a very daunting undertaking because if you’ve seen the report yet on the web it’s a hundred and something pages and it’s very, very rich and detailed reading so my task is to try and fit some of the key points, explain what we did, how we did it and some of the key findings which can then, I hope, whet your appetite to go and read the whole report.
You should all have a copy of the summary so you can actually see what we pulled out of that as the things that we absolutely must read.
Now of course, what we’ve heard so far this morning is the background and the foundations of where this research came from, and it’s absolutely clear that we have moved a huge distances in the last thirty years and when I first trained and qualified at St Mary’s Hospital in 1984 everybody who was a patient at St Mary’s Hospital with HIV died and today everybody almost lives, and that is an extraordinary change that has happened in my professional career and so we are now in a situation where we are really, I think, exploring change and hearing both Lord Fowler and Kevin Fenton, I think it’s just reinforced the fact that much of this research project has been about change and actually how to we maximise and optimise the opportunities that change gives us.
And change has been very difficult and I’m not going to underestimate the fact that for many people in this room, particularly we’re all living that change, some of the things that have happened in the last couple of years, politically and structurally have been particularly difficult. However, we have hope with this piece of research to explore them, to look at where those change processes are and to think what the actions are that actually need us now to move things forward along some of the lines we’ve heard about.
So, we’re looking not just at the change medically but the change in society and the things that Kevin’s talked about, about apps and knowledge and science and technology and the ways that things actually happen in our society, and again hearing Lord Fowler talk about finding the people who can reflect that back to society in a way that makes sense and will then take these messages forward but I think one of the things that we absolutely wanted this report to focus on is what are the needs of people living with HIV now and for the future? Because never before in this country, have there been so many people living with HIV. And that is the success that we are living, that the people who are HIV positive in today’s world are living and their needs are changing and the system is changing and this is not, as I think Jane very eloquently forward to us in the first five minutes, really the nub of the problem and yes, it would be fabulous if in a generation Kevin, we make this virus a thing of the past.
Until that happens, we have hundreds of thousands of people whose needs are changing and we must make sure that we are addressing those.
And of course, is the system ready for that? That was one of our big questions. And not only is the system ready, but the system has changed and the infrastructure, the commissioning, the ways that HIV pathways are commissioned has changed and the policy environment has changed and how that’s all going to reflect and playout in the lives of people living with HIV, the people providing the services, the way that the virus is constructed in this country are all absolutely crucial. So I think that was where we were coming from in the first place and really looking for where does that take us into the future and what needs to happen next to continue?
So, you’ve seen and we’ve been talking about this, more people with differing needs, ongoing infection, better treatment, fewer deaths and this graph shows you a public health link and data, fabulous data, thank you very much Public Health England, that the ages of people living with HIV is going up and as people get older, whether they’ve got HIV or not, they have other problems that arise, they take more pills, their care needs become more complex and again, HIV adds another dimension to that and how do we do it.
I really want to congratulate the design team at the Kings Fund because we’ve been trying to get a diagram that really shows the commissioning arrangements for the HIV pathway for some time and this I think actually does it very well. Yes, it’s confusing, yes it’s complicated, yes it’s got lots of colours, that is today’s reality of the commissioning structures and that is the challenge that I hope this report focusses on how, if we are living in this situation with this many people, with these needs, with these many players, how do we join it all up? How do we work together? How do we try and make sure that there is something which, as Tony Pinching said in 1984 I think, about HIV, the seamless road of care when we have this many different boxes, and I think it’s very appropriate that they’ve been put as sort of square boxes because actually people are working often in those square boxes and I think that’s one of the things that we absolutely have to overcome?
We also had the issue of what are we going to talk about when we talk about HIV services, because actually it could be enormous. So, this diagram really just shows where we’ve try to scope the project with prevention, testing and entry into care and ongoing treatment and care as the central planks if you like, HIV specialists, making it absolutely clear that the involvement, the meaningful involvement of people living with HIV all the way through, actually got the right interfaces with all the other services that people need and then putting this into this circle where system leadership comes and then the wider world and what is happening with attitudes and again we’ve heard a bit about that.
So, very quickly, the methodology, the project started in June 2016 and although the team would say that the data collection finished in January 2017, the work is continuing and today is part of a project so it’s like up to today.
Overall, the team interviewed 104 people, key stakeholders. We took four case studies sites, trying to think of where the differences might actually really show up. So, we looked at a very rural area with a very low prevalence, we looked at London because half the people living with HIV or nearly half the people living with HIV in this country are in London. We looked at another big city that was outside London and we looked at a very high prevalence much smaller city and we’ve agreed, for the people who spoke to us in those areas that we would not disclose who they are, but if they wish to tell you that’s fine, but those case study sites gave us, we hope, an overview of the differences and the diversity of what’s happening.
We talked to a lot of people living with HIV and Jane and Mel and Rob were instrumental in helping to design the focus groups and the work that we’ve done and knowing the system is different in Scotland, we had some calls to Scotland, we had focus groups and then we had workshops to just test out some of the findings with key experts and we did a dramatic analysis and have written up the report that you will be able to see.
The report has been out for external review and thank you to those of you who helped us do that, and all the way through we’ve had an external advisory board, many of the members of whom are in this room who have sense checked us, have helped us direct this project and without them we wouldn’t be here today, so thank you, that’s how we got to here today.
So, what I’m going to try and do now, in a lot of rather texty slides, is try and pull out those key things that this study has shown or added or that we think are important and in a way the first half hour has been filled with attitudes and stigma and understanding and it has come out in every case study area, in every stakeholder interview, it’s come again and again and again as the thing that is holding people back, and that actually the diversity, the epidemic and the way that the attitudes change is really important and the level of information out there about HIV is painfully small and the numbers of misconceptions about how HIV is transmitted is painfully small and the understanding that somebody who’s living with an undetectable viral load is not infectious is not well understood. So there’s a huge education issue that we have found in all the people we’ve talked to.
We looked in great depth at prevention and again Kevin talked quite a lot about this, but you know we’ve found over and over again different populations, different needs ,different approach, the need for combination prevention and in a number of areas we spoke to, a lot of our informants talked a lot about testing, they talked a lot about treatment, they talked a lot about prayer, but actually behaviour change, some of the other areas of primary prevention seemed to be much more complex, much less well addressed and so the sense that maybe there’s a biomedical magic bullet, may be something that has allowed us to lose sight of some of the other areas.
But the thing that really kept coming back, in case study areas, and our discussions, was the lack of a sort of strategic overview on the whole, on the whole. Not everywhere, but on the whole. One area that we spoke to which was a middling prevalence, not yet high prevalence but was heading that was and our advisory group suggested that we could have some of those conversations, really the sense that they were going to be a high prevalence area and what could they do to stop that happening was not a piece of planning that was actually yet hitting their consciousness.
And really, I think the other thing which has come back again and again and showing you that all those boxes, really hard to find consistent leadership across the whole system and the tension between central and local, coming back and forth and back and forth is a key tension.
And the accountability, after those 2012 reforms, and with all those boxes, is dispersed, complicated and is something that people have really highlighted over and over again, and it seemed to us that we were seeing fabulous examples of leadership within each of those many, many boxes, but it was very rare to find leadership that was joining the boxes up in a coherent and consistent fashion. It is happening and one case study area is doing it beautifully, but it was one of the areas and we were delighted, and it shouldn’t have been such a shock, to find it I think is what I’m trying to say.
We also looked very closely at how people living with HIV were being involved in design, in planning, in strategic thinking and it’s very clear that consultation is happening. Consultation is alive and well, but the changing nature of living with HIV makes it difficult for people to always be available to be consulted. Widespread, big geographical rural areas, very difficult to make sure that those views are heard and it was very clear that each organisation knows they have to involve people their bit, but nobody is involving people across the bits and again, it’s the same joining up question. So, nobody’s really ensuring, as Jane has just said, where is the engagement across the system as well as within each particular area and people told us they were being consulted but nothing much happened after they’d been consulted and JSMAs and local government are very keen to do surveys about what people thought, but whether that made any difference, was a real challenge.
So again, local authorities, local areas which are looking to help their communities and populations, the message is: thank you, great to ask and please tell us what happened next and whether, as Jane said, we were not just heard but listened to and acted upon and there was still a sense of suspicion about what changes might mean. Is it all about finance? Is it all about cuts? Is it all about trying to do things cheaper rather than better? and that kept coming through and I think that was something that came through, that the changes in the system that we’ve got have coincided with austerity. So, people sense is that change equals money cuts as opposed to change means difference or innovation and those two messages have become conflated as we went round the country.
Talking to people about testing and entry into care, I think the thing that struck us most is this really huge inequality and late diagnosis and the prognostic implications of that, because it is one of the key issues about whether you are going to live and live well, however how that happens is pivotal and here we are talking about these advances we’ve made, which depend on people being diagnosed in time, able to access treatment in time and that has got wide geographical variation that is one of the issues that we really think needs to be looked at.
We’ve heard from Jane ongoing treatment and care overall very highly rated and really loud and clear that peer support and social care services are seen as pivotal and one of the things that did come through was a sense that clinical care is baseline and is there and is good and if people are to live well, then the peer support, the social care has to be there as part of that package and without it, the clinical care is much less stable to deal with.
When we go back to the fact that many people are getting older, what’s happening for comorbidity management is much more inconsistent and of course each area is going to be different, so there are going to be local solutions for that. However, we didn’t see overarching strategic plans and we didn’t see overarching plans for models of care that might address that, and again primary care really interesting, some areas doing really well with some champions, other really not doing a great deal and one of the key national stakeholders who spoke to us about primary care, pointed out that for many general practices there may be only one or two patients. There may be very small numbers. The pressures on primary care mean that primary care practitioners, when they have the opportunity for study leave go and learn about diabetes or hypertension, because they’ve only maybe got one or two patients with HIV. So, they’re not necessarily putting their resources or their educational resources into the learning.
So, that, again, thinking about those boxes and a lot of people talking about primary care, central to this conversation, and yet very distant and not necessarily well joined up as this research is showing us.
And those interfaces with other services, being really crucial because actually as people live longer and better with HIV and their virus is suppressed, they’re coming into clinical HIV care much less frequently, so they’re not necessarily seeing doctors in between and if they’re not engaged with primary care or long term condition management services elsewhere, they may go for a year because as Jane said, they’re not telling anybody. They’re avoiding going to care services for other reasons. They don’t believe their GP will necessarily help them, and all that came through in the conversations that we had.
So, some overarching things. Quality of life really, really matters and biological suppression as an endpoint is essential, but it’s bigger than that, it’s more than that and it hasn’t gone away and ensuring wellbeing as opposed to dealing with ill health and that was reinforced by a member of the UK CAB talking to me yesterday, that actually are we thinking about the wellbeing agenda or are we thinking about the ill health agenda and how do we get that to work.
The system, the boxes that we’ve shown you, nobody, not one person we spoke to out of those 104 thought that the distribution of responsibilities made sense to do things well. However, we asked the question, should there be another reorganisation? And there was a universal no, so I think there’s an acceptance, that the message that we got, is that we’ve somehow got to make this work and that trying to turn the whole thing upside down again isn’t necessarily going to deliver something that’s going to be better and it also was pointed out to us, it wasn’t perfect before 2012. However, the 2012 reforms have shown up perhaps some of those cracks in the infrastructure.
The need to maintain the momentum, maintain the excellence, Lord Fowler’s talked about this, Kevin’s talked about this, the risk that we current face that actually with the good things that we may be risk losing if everything comes down to the bottom line and cost cutting and please, the message we got from many stakeholders, was don’t throw out the baby with the bathwater and remember what’s going well.
So, very briefly, and there’s lots of words in here and it’s all on the website so I’m going to try do it as quickly as I can, we felt this local national tension to be really important. So, to think, if those are the findings, if this is what we’re hearing, what needs to happen locally and the sense is there needs to be local system leadership and the recommendations that we’re going to make on what we have heard from the evidence we’ve taken, is that directors of public health know their patch and their lead HIV clinician knows the technical specialty and the issues around HIV and they are the two people who should, in every local area, be convening, bringing the system together, bringing the key stakeholders together, to try and formulate a plan, a single overarching local plan.
And we know one of our case studies areas is doing that and we’ll talk perhaps about that in one of the workshops, but then thinking about how these roles fit together, where the governance sits, where the relationship sits, because each area is going to be different. And then thinking what other structures are there already? So there are health and wellbeing boards, there are STPs, there are other structures that are brining things together. So where does that local plan sit in those new processes?
And thinking about where the relationships, with all the other services are that people living with HIV need, people at risk of HIV need for prevention and then thinking how we test and develop some of those models which again are not necessarily going to be one size fits all, in fact they are likely to be one size that fits all that will allow us to deliver long term best outcomes and reflect those needs for difference.
The national action, well this is more complicated and we did ask the question of a number of stakeholders and in a number of workshops; do we need another national strategy? Because we don’t have one, the UN recommends that each country has a national HIV strategy and ours ran out in 2010 / 2011 and we have the sexual health framework and the aspirations within that are very much around sexual health and prevention but we don’t have a strategic direction nationally about what good looks like for people with HIV and HIV services. So we would recommend that the Department of Health reviews the sexual health framework and reflecting today’s reality of living with HIV and trying to flesh that out to make that more HIV related and to ensure there’s some stewardship for the system, ensuring that all the people in those boxes know about their roles and their responsibilities and developing a more robust recognition for accountability.
For NHS England, clearly who have the responsibility for ensuring best possible outcomes for clinical care, then what are the service models? What actually is going to work best in each local area? So actually asking NHS England to really think and help to design and work together to make sure the service models meet current and future needs, and that they fit like the jigsaw puzzle with all the other things that people living with HIV need and making sure that the long term condition discussion which in NHS England is this masses of work going on, but HIV is not on the list. You read any of the long term condition management strategies in NHS England, and you do a word search for HIV, you don’t find it. So, there’s a piece of joining up there that the NHS England teams could do.
Kevin, Public Health England, again really thinking, very much I think as you said, that the national and local data which is like gold dust, that we actually use it to inform actions and that it’s in a timely appropriate way so that people can grab it and see what needs to happen and that it measures the things that are mattering now. So, things like the positive voices part of the HARS dataset. Those sorts of things give us an insight into how life is on the ground. Really asking you take leadership and prioritise prevention work that you talked to us about, and whether actually there are now in today’s world, a need for new indicators in the FOFF, whether late diagnosis alone is enough and we would ask whether you could reflect on that, and thinking really how to tackle late diagnosis variation, because this is health and equalities in the raw and really need to be something that we get on top of.
And of course, we need a workforce. So Health Education England, really to engage with services and their regional offices to help us to think how we can have the workforce, to make all this happen on the ground.
So, just to conclude, and this has been a whistle stop tour through the most huge sets of data and lots more that I could have said, but in particular I think the key issues, clinical HIV care remains world leading but there are risks to it in the future and the risks are, we’ve heard lack of planning, lack of money, lack of joined up attention to the problem. Local plans absolutely crucial and system leadership to deliver on those and to make them happen, and how to be inclusive across the pathway.
Thinking about care, partnerships that actually focus on quality of life, wellbeing, peer support, things that we are hearing you know, Jane has pointed out those things that are fundamental and yet are being lost because people haven’t got money and this is not necessarily out of any wish to do the wrong thing, it is trying to preserve budgets in silos and not to actually join things up. Making sure HIV is in the long term condition plans, and we really do believe that even as we talk about what’s needed locally on the ground, the national bodies have a role to play, strategic direction to think about where local people can hang things on and as we’ve heard over and over again, support for change and continuing priorities on things like stigma which again I think Lord Fowler due to be that is the quintessential national thing and could not the NHS be the first place to say, we will aim for zero stigma and discrimination in clinical care?
If the national body, it has the mechanisms to do that. So, maybe that could be the starting part for COO stigma.
So thank you very much for your attention, thank you for My Case Fund for funding the work, all the people from UK CAB who informed the work, Alison who really held the whole project together, that made all the administration work, all the interviewees, the advisory board, the workshop, everybody who read the report multiple times, sent us comments back and to all the staff who’ve supported us, thank you very much indeed.