HIV: leading and living beyond 90-90-90

Yesterday (Friday October 21st, 2016) a group of people convened to discuss the future of HIV services. National experts Prof Jane Anderson (National AIDS Trust, Homerton, ex PHE, now King’s Fund ) Dr Michael Brady (Medical Director, Terrence Higgins Trust and Clinician in South London) and David Buck (King’s Fund, leading the future of HIV services work) came and spoke. Their presentations, passion, vision (and from Michael Brady the mathematical modelling for an utter geek like me) were stunning.

Local experts (PHE epidemiologist, local HIV clinicians, vol sector services, social workers, commissioners and others) spoke. People with HIV were engaged (but really not enough, and not diverse enough,we recognise that.)

I opened the workshop with some slides on trying to understand where we are, what that means for commissioners, and where we might want to go. They’re here http://www.slideshare.net/jamesgmcmanus/future-of-hiv-services-hertfordshire .

I also wrote up some suggested conclusions at the end, and they are in the slides above. We’re still writing up the detailed work from people and we will share all slides and work online soon.

A strategic vacuum?

What national event was this?

It wasn’t. It was an event to try and navigate a local future for HIV services in our local area. It was held in what feels like a national policy leadership vacuum. At one point I almost put on an empty table the name cards for policymakers who seem utterly missing from this debate despite having being invited. NHS England were once again conspicuous by their absence from the table.

I thought a little while ago we didn’t need a new and another national HIV strategy. Well, I was wrong. We do. And it’s pressing.

Although the early years of HIV have gone, we still face challenges. Professor Jane Anderson pointed out that however good a thing it is in itself,  we risk seeing people who are maintaining viral load suppression as a success despite the fact that there are many other things going on for them, and for some folk a lot of work has to go into getting just that. 90-90-90

UNAIDS targets are, she says, a place within our grasp. But that isn’t enough.  I agree. That doesn’t mean we should just continue funding existing models of service either, by the way.

Back to the future?

In some respects we seem to have allowed our narrative on HIV go seriously awry. We talk about it as if it’s a manageable long term condition, with often very little nuance beyond that. And in some respects it may be. But the richness of narrative beneath and beyond that about what this means is needed. In and of itself this long term condition narrative is an impoverished one. It’s neither complex enough nor dynamic enough to articulate the similarities between and differences from HIV and other conditions like Diabetes or COPD.

Twenty two years ago I read a book called “Productive Living Strategies for People Living with HIV”. It changed my thinking at a time when we could only dream of what new generations of antivirals would bring, and the new health challenges which would come as a consequence of people living much longer were as yet unknown.

It’s time to survey the horizon, what we know, and go back to what we learned from those early years about what services need to be in place for what stages of living with HIV infection, and refresh this for our current situation.  We need a new narrative that providers and commissioners can coalesce around and one which takes us away from the simplistic “long term condition one.”

Dynamic condition, systems thinking

The long term condition narrative fails for me. When  I am faced with a friend who otherwise is holding down a job and is in terms of undectable load a success but needs a weekend of just collapsing in a heap and being cared for, or when I visit someone with multiple mobility and sensory problems which are transient and can’t get mainstream services to do what she needs, or when I visit someone whose anxiety and depression is partly caused by stigma, the long term condition narrative dissolves.

The dynamic nature of living with HIV and the fact that we need a variety of agencies doing different things, but probably one holding the ring, means we need a radical rethink using systems approaches.

I , for one, am excited about what the work of the King’s Fund on HIV futures will bring. Because expert people with and without HIV experience will look at the system and identify some local and national opportunities and barriers and feed into this. It’s long overdue. And the fact we got this bunch of folks to our local seminar was fantastic.

HIV in four voices

It seems we speak about HIV with at least four voices, none of them unified.

  • The voice of policy – seems focused on a one note monotone of treatment and testing and little else
  • The voice of experts – complex notes rising to a harmony which tells us we need a multitude of foci and a system wide approach to reduce transmission and secure quality of life
  • The professed voice of commissioners – has too often repeated the uncovincing melody that HIV is a manageable condition and not understood the nuance or complexity behind that, and seems increasingly out of tune with reality
  • The voice of people living with HIV – complex and not well heard yet vital

This discordance needs national and local leadership to once again sound in unison the state of HIV in England and the must dos which flow from this.

Renewal and re-engagement

We face some significant challenges, and we need to navigate a way through them. Some lessons from yesterday were:

  • HIV shows different epidemiological characteristics – no one strategy for testing,diagnosis and treatment will work everywhere in England
  • The treatment can cause as many problems as it solves
  • Official statistics even on testing uptake dont reflect all the work going on
  • People with HIV present needs beyond NHS testing and monitoring and these vary by stage of disease and by person
  • The unity of the person – physical, emotional, psychological, spiritual – has gotten lost in the discourse about getting folk to an undetectable viral load. That’s brilliant, but the melody of thriving, coping and surviving with HIV is more complex and we must recapture that
  • No single national one size fits all strategy is sensible, but there are some things which we need national leadership for – not least a push towards integration
  • You can read HIV into the principles of the NHS Five Year Forward View. Where is the leadership?
  • Can anyone point me to a single Sustainability and Transformation Plan which addresses this?
  • We need to still do more to engage people with HIV in service design
  • We need to refresh and renew self management
  • We need to ensure services join up
  • We need a clear comprehensive system wide view from preventing transmission to diagnosis, treatment and care and self care
  • The complexity of HIV as a consequence of all of this is often not well understood by commissioners

We need to articulate the new system from PrEP to Care and back.  On 6th December I have been invited to speak to the National HIV Providers’ Forum on something like this, as a commissioner.  I will probably learn and take much more than I contribute, but this is a discussion we need to have together.

Jane Anderson brought to life the complexity of HIV with three vignettes of three people who, while all virological successes in 90-90-90 terms, are complex and need more. Stories from people in the room of treatment need and experience ranged from those thriving with HIV who need their testing and monitoring to fit round their lives to those with a range of complications and issues who found existing services dont meet their needs.

Public sector finances

There is less money. Commissioners in a number of areas are cutting HIV services. What we should be doing is sitting down and doing re-visioning exercises to look at what is needed and for what cohort of people.

It is simplistic and untrue to say HIV is easily managed by all. Equally it is simplistic and untrue to say that the service models of fifteen years ago (lunch clubs) are what we need now.

We need a different dialogue on charting a course for services.  I attempted to do some of this in my population segmentation slides.

That doesn’t mean financial cuts won’t come. But it should mean that redesign, prioritisation and service integration become more important and fairer. This will continue to have profound implications for providers and commissioners. Jane Anderson suggested that some providers in HIV could branch out to other areas too. Rather than integrate HIV with other generic services, the stuff HIV services have learned needs to be shared with others. I can think of areas like Diabetes, COPD and Heart Failure where the expertise and know how in HIV could be easily transferred to the benefit of many. (My dad had COPD heart failure. Some of the most successful stuff I did with him I learned from friends I cared for years ago.)

All the more reason why we need all the system leaders to sit down around one table together and share one public pound. The taxpayer has a right to that, and so do people with HIV. NHS England, are you listening?  We know you have an impossible task with diminishing staff but we could help you out of this…there are ways.  Come, let’s sit down and talk about how we help each other.

So what next?

At the end of our workshop we had a range of actions. In short, we’re having a redesign to create a new strategic plan and we are going to try some new ways of engaging people with HIV in this. But several people said it’s about time to go beyond UNAIDS 90-90-90 targets.There were various ways of expressing this, but for now here is my (perhaps rather inadequate) take on this below. UNAIDS 90-90-90 tells part of the story, but everyone felt it wasn’t enough. And together we articulated some more tasks.

Beyond UNAIDS 90-90-90

UNAIDS 90-90-90

90% of people diagnosed

90% of people on treatment

90% of people achieving viral suppression

OUR ADDED 90-90-90

90% of people engaged in shaping and designing services

90% of people with optimal quality of life

90% of people aware of the facts on HIV and commited to reducing stigma

Light amidst the encircling gloom

Ambitious?  You’re dead right. Achievable? Yes, as a marathon not a sprint. Necessary? I believe so. If we take everything we should believe about HIV – we want an end to HIV ongoing transmission and it’s doable, HIV is manageable, it’s complex, it changes and stigma are huge issues – then these priorities naturally fall out of any decent strategy.

But we need national leadership in this, and that needs to be joined up across all national agencies, not just left to one, while others pick and choose whether to ignore or engage.

Who’s up for it?

 

 

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