Not another video about HIV? Yes! Here’s why.

 

In less than a month, on 11th October 2017, a new and I think ground-breaking resource will be launched which tells the story of people living with and affected by HIV.

What, another one?  I hear some of you ask.  Yes, and I’ll tell you why.

Why another resource?

This resource is different. Funded by Public Health England, through their HIV Prevention Innovation Fund, this new resource will feature people prepared to talk despite the stigma.  It privileges the voices of people living with and affected by HIV above other voices. Multiple people living with HIV and affected by it are in the resource, have co-produced the resource and have been in workshops considering, commenting on, augmenting and amending the resource. This has been, in and of itself, a powerful experience.

This resource has a series of videos, accompanied by a website of resources, blogs and other materials. It features people with HIV prepared to share how they thrive, cope and how HIV, their health and the deepest issues of their lives come together, and the problems and the positives of that.

And I have been privileged to be the sponsor of that project, at PHE’s request.

This will be a tool to combat stigma.  It will be a tool to show people the nuanced reality of living with HIV. It is a tool for people with and affected by HIV.  And it is a tool for celebrating people with and affected by HIV.

The changing nature of life with HIV

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We are in a time when virological suppression is a major success story (People I work with, people I love who ten years ago would have died are still alive and well and every day I cherish that and them.)

We are in a time when we could achieve the end of new HIV transmissions, and tools like PrEP are further resources in the long travail which has been the journey since the first people I knew and loved with HIV died. Today, many people with HIV are thriving , some in jobs vital to our society, others quietly living and working and relating, living out their gifts and their talents.

But, others still aren’t thriving. And it’s not just about biology. Far from it. With the success of virological suppression – where the virus is essentially regarded as undetectable – come a range of opportunities, choices and still many challenges. Stigma, ongoing challenges of living, new health threats to people with HIV, and the need to renew our efforts to cherish those with and affected by HIV while reducing new infections.

People live longer, they contribute their talents and gifts to their loved ones and our society.  Great.   For some, cognitive decline, however subtle, diseases of ageing in an ageing cohort of people with HIV, negotiating social support, relationships and just coping with life alongside a lifelong health condition, remain psychological, social, practical and – dare I say it – spiritual and existential challenges.

Negotiating life with HIV still takes skill. For every person who accomplishes it with panache, there is a story of sheer hard work behind it.

In a world where Pre exposure prophylaxis is becoming more available (though I notice our trial in England is still dragging its heels) and undetectable status means different issues for negotiating intimate relationships than it once did, we need more than ever to reaffirm people, reduce stigma, and most of all, learn from our friends, colleagues, loved ones, partners and residents with HIV.  One of the world’s foremost HIV resources, Aidsmap has a great post on why it endorses the prevention access statement for HIV which makes you realise just how much has changed, and how much we still have to achieve.

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http://www.aidsmap.com

 

So come on, what’s special about this, really?

Well, two things.  First, the people in it.  Secondly, the people in this resource, and the resource itself, will address HIV through the context of Faith. Specifically, Christian faith in this resource, but other faiths may follow suit.

I want to tell you why, and why health professionals should take notice.

But let me say this first: this resource is not an exercise in Christian exclusivism. It’s an exercise in affirming the particularity of faith and producing a model others can use and follow. A one size fits all approach to faith is an immature approach to diversity. In the same way most of us have multiple protected characteristics. Seeing people through the lens of one shows how poor the imagination of much of our diversity policy and the assumptions around it still are.

The Project will be called Positive Faith (Launches late October 2017.) The resource features people from a range of Christian churches. I’ll speak about why later.

A few thanks to the people who’ve worked hard

The project is being managed and led by Catholics for AIDS Prevention and Support.  The wonderful Vicki has project managed it.  CAPS are a small charity which provides direct support and care including supporting Positive Catholics.    Our local Hertfordshire HIV Voluntary agency, HertsAid, has given significant support and effort to supporting this programme. And Public Health England have, of course, funded it.

Some reasons why we need this

First, we know from ever greater scientific evidence that for people of faith, their understanding of health challenges, their coping, even their health behaviour, is profoundly influenced by and mediated through their faith. People of faith – even those who feel excluded by it – greatly understand their health experience, even down to their efforts to live with HIV or stay free from it, in a way linked to their faith. We still lag behind in the UK with that understanding in many of our health services, despite it being a commonplace of Health Psychology for decades. We cannot do health without encountering faith in dialogue for people of faith. Ellen Idler’s 2016 book Religion as a social determinant of Public Health (Oxford University Press) is a lucid presentation of the evidence for this.

Second, health services sometimes still seem to remain squeamish, embarrassed or discomforted by the presence of faith. It’s the protected characteristic of the equality act many feel uncomfortable with. But over 40% of people in the UK still confess a religious faith of some kind. NICE guidance, NICE standards and more and more scientific evidence affirms that to personalise health care, we must recognise that we cannot treat faith as something totally private and separate from it. If a person of faith is in the clinical encounter, so is the issue of faith.

Churches struggle with HIV, Health services struggle with Faith

Faith is not going away. It is not dying. Even if you think it’s a minority pursuit, it’s important to that minority, which is still one of the largest in the country. And this resource is an attempt to redress an inequity in health – that of faith and HIV.

We must do better on this as a health system. This new resource speaks actively into that. If churches are sometimes uncomfortable about HIV, health services still feel uncomfortable about faith. This resource seeks to bridge that gap. To that extent this is a series of interventions about reducing stigma to build health equity for a population which still faces many challenges.

Why only a Christian resource so far?

Thirdly, this resource seeks to build inclusion of people with and affected by HIV in churches. To that extent, this clearly is a public health intervention. And this is why we haven’t produced a multi-faith resource. To understand HIV in the context of a particular faith, there needs to be dialogue in the language of that faith for people who have it. Yes, we need Islamic, Judaic, Hindu and more resources. And I hope people will use this approach as a template. But for a Christian black African woman to understand her HIV and her faith or for a gay male Christian to understand his faith and HIV prevention for himself or others, we and they need to relate that Christian faith specifically to health.

Is this really about prevention?

How will this prevent HIV? Well, by affirming and including people and pointing to them how much their health is something to be cherished and how much their faith acknowledges this. And we need to find a way to keep ourselves healthy and resilient to get the best from life. And health doesn’t mean a blissful state of freedom from any problem. It means adjustment to the realities of our physical, psychological and social challenges and limitations.

This resource sits firmly in the tradition of public health interventions to strengthen individuals and change communities.

More in-depth reflection

Nearer the time the Catholic Press are expected to cover this with some significant space. Articles have already been commissioned by The Tablet and The Catholic Universe .  The Catholics in Healthcare Blog will obviously carry a post. The Pastoral Review will carry a more in-depth article on the pastoral, theological and church issues around this.

The resource will be launched on 11th October 2017 by the RC Archbishop of Southwark and the Anglican Bishop of Southwark at an event in London in which people with HIV in the Video will speak. Fr Timothy Radcliffe, OP, the Master of the Dominicans, will speak alongside people with HIV.  For invitations contact Vicki Morris the Project Manager or Jim McManus the sponsor.

 

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Co-producing public health in local government, and top reads for councillors

 

A few days ago I tweeted, asking what folk would have as their top reads for elected councillors.   I did this the same week as we had our first Public Health and Localism Cabinet Panel .

So before I do the list of reads, allow me to digress a little (or indeed a lot) about the learning process both Directors of Public Health (DsPH) and elected members are going through. This is just my very personal take from what I’ve heard and seen from other DsPH and members, and colleagues at LGA and elsewhere.

I have been a local government employee on and off for over nine years, and have spent much of the rest of my career working alongside local authorities from national organizations. Local government is something I am passionate about. I feel privileged to be involved with the work at INLOGOV And I think Local Government is the right place for Public Health to be, for reasons I have enumerated ad nauseam elsewhere.

But I am on a very steep learning curve currently, with new arrangements and systems. And so are many of my colleagues. Our HR Dept and our Learning and Organizational Development function within that is helping us by finding experienced local government mentors for our senior team.

Passionate and strong elected leadership

At the same time as the officers are gearing up for this agenda, so are elected members. What became very apparent very quickly in the first public meeting  of our new Public Health and Localism Cabinet Panel was that not only do we have a very focused and commited Executive Member and Deputy but we also have a group of extremely interested and passionate councillors up for the debate, across County, Districts and Towns/Parishes. In fact our induction session on public health attracted nearly half of all councillors and over-ran into coffee time because of the number of questions.

The questions and contributions alone at the Panel have given us enough strategy and evidence work to keep us busy. My only regret was that it will take us time to do justice to the level of thought and questioning that had been going on before and during the meeting. Just one question on Obesity alone could have kept us going for an afternoon’s focus on what we want to achieve.

So I work in a system where people are up for the work and the challenge. I know it’s not the same for everyone, but this strikes me as a great place to be.

The councillors and evidence debate

During the run up to transition from 2010, I got rather impatient with the number of people who repeated what I felt was a not very well thought through mantra that “councillors are not evidence-based.”  Not only is it not true, it isn’t helpful either.

Councillors have to balance a range of factors in coming to a decision and a view. So do we as officers in coming to formulate our advice and proposals. Understanding and exploring that with each other is a journey I always find helpful. Our job as officers is to advise, guide and support using our expertise. And to be honest, I have never yet had a coffee with a councillor where I haven’t learned something about how to do my job better and serve them better. And I have never met a councillor who didn’t impress me by their work and enthusiasm for their population.  Approaching each other in a spirit of generosity is what I have found to be crucial, because in such an atmosphere, when each side makes mistakes, the other can help.

In the past month I have had some amazing discussions with officers and members, and overheard others, about why Lifecourse and Proportionate Universalism concepts are important to our public health agenda, and about the worrying patterns which emerge when you compare us against ourselves, rather than against England. In fact, all of these concepts have been taken up into our Health and Wellbeing Strategy with enthusiasm. We now have to deliver on them.

Our public health roadshow round elected members at all three tiers of local government always has a slide on the determinants of health. I have yet to have a single meeting on this where members don’t start trying to understand that within their context.  And I can add to that CCG colleagues, HealthWatch, voluntary agencies and a host of others.

Interested members

Here are just some of the questions elected members across all tiers of local government, and not just in our area, have been emailing me in the last month:

  1. What are the best reads for me in my new role?
  2. If I wanted a quick introduction to public health, where would I get it? (I tried to sell Oxford University Press the idea of producing one of their very short introductions, there are any number of people in the public health world who could write that well, to no avail)
  3. What are the best websites and newsletters for me to keep up to date given I am a councillor not an officer, and have limited time?
  4. I’ve found this research paper. Is it any good, does it translate from US/Australia/wherever to UK contexts?
  5. How do you as our DPH stay up to date with all this?
  6. I’ve had an email/letter from (insert national charity of choice) lobbying me on (insert health issue of choice)…can I talk to you?
  7. Can we have a CPD session on evidence in public health?

If that’s a sign of things to come, I think public health will thrive in local government. The key issue for us is to find the right way of working and the right way of supporting, providing the right balance of information, evidence and guidance without doing too much or putting people off with technicalities. That’s going to be a learning curve, but one I welcome.

One thing, however, is clear. our local Policymakers want public health to be right and to deliver.

Finding a way of working: co-producing public health

Dominic Harrison, the DPH for Blackburn with Darwen, recently gave his take on the DPH role in relation to policy.  This is clearly an issue which DsPH and elected members will need to work together on locally and nationally so we have clear lines, clear cultures and strong relationships. It does need some development time, and the nature of local government is that what works in one area may well be different in another. And if we’re honest, the NHS wasn’t necessarily all that different, was it?

I have been on a learning curve about working with users, patients, carers, third sector organisations and clinicians in co-producing health pathways over the past few years. In several roles I have had some fantastic help from an organization called Governance International, which has links with INLOGOV and are about to kick start more work on this locally.  Governance International believes that co-production is a better model for public services and communities  because it “is about professionals and citizens making better use of each other’s assets, resources and contributions to achieve better outcomes or improved efficiency.”

I feel this is a good model for supporting elected members in arriving at their new policy decisions in these confusing and overlapping worlds of Health and Wellbeing, Integration of Health and Social Care and Public Health in an informed way. It strikes me that the job of building robust and effective public health in Local Government needs to be co-produced with elected members deciding policy and also officers and members working productively with a range of stakeholders. And actually, that concept isn’t really new. The context, players and methods might be. But as DsPH we have experience and skills we can bring to this agenda. What we have done before can apply if we reflect through it.

I can think of endless reasons for why we should co-produce public health but let me just pick five:

  1. When we stop and think, we can’t do public health without co-production. And a lot of us have been doing this. We just need to apply our skills to the new world and learn the new context
  2. A little thing called the law and the legal role of elected members in an elected democracy is an added reason. They are there to decide policy and to govern. And in any case they have experience and understanding we as officers don’t. Equally, as officers we have expertise others do not
  3. The determinants of public health need a whole system approach and a variety of different strategies. No single bit of the system has all the pieces of the jigsaw puzzle, and we all need to work together
  4. In my experience, if you can get users, carers, the public, elected members, volunteers and professionals all understanding and agreeing with an agenda, then there is more likelihood that the agenda is the right one and will deliver results.
  5. Accountability to others for how we exercise stewardship of the talent and knowledge in public health is never a bad thing. And we should share our knowledge lightly as service to others.

So, while we are on this journey locally, we will be doing a number of things to try to co-produce public health from the Strategy to the services to the approach to learning and deciding.

Development of Directors of Public Health and their teams

It strikes me that some of the various development opportunities on offer for DsPH haven’t yet got to grips with this agenda. There is an overlap between public health and health and wellbeing Boards, and the Integration agenda,  but there are also very important distinctions and differences which public health needs to work on, which health and wellbeing Boards need to know is happening, but which they won’t get into the detail of.  Health Protection and infection control are just two examples of this.

We need to get the balance right here, and sometimes we do too much detail. Expecting elected health portfolio members to sit through an entire day on the technicalities of screening and immunisation, for example, feels a bit like expecting the Fire Service portfolio holder to sit through a day on the design and implementation of gas masks. We need to be clear what is important for members, what is important for officers, and what isn’t.

We still have a public health system in England which doesn’t yet understand local government as fully as it needs to. I don’t intend this as any criticism, it’s just a statement of how I see the world. Perhaps the best way to improve that is for members and experienced officers to work together with DsPH new to this world through learning sets or mentoring.

And those bits of the system which don’t understand local government or don’t understand public health need to admit this, accept that they have to learn, and learn with the rest of us. Otherwise we won’t move on as quickly as we need to.

There is a strong role for ADPH here, and I was immensely heartened by the discussion at the ADPH policy workshop recently, and by the presentation from Kevin Fenton at Public Health England (PHE).  I think ADPH will become increasingly more important as the voice of and support for DsPH in ways that other bits of the system cannot be. This is not a  criticism, it is just about recognising the complexities of local government are very different from the previous NHS system, and we need ADPH, FPH, PHE, LGA and others to do their roles well and in a way which also co-produces the new public health world.

Back to the reading list

In the meantime, here are those books people tweeted, and a massive thanks to so many of you who tweeted. This felt like the public health world being very supportive. You may agree or disagree or just wonder about these choices. I will think about my own suggestions, and invite you to add more using comments below. I’d also welcome comments on what you think this list is saying more generally about what we think elected members might want to know.

The straight into the detail

Status Syndrome by Michael Marmot

Essential Public Health by Donaldson as a primer

The Marmot Review of Health Inequalities in England

How to Stay Sane by Phillippa Perry

Ecological Public Health by Rayner and Lang

Bowling Alone, by Putnam

Disease Maps by Koch

Spirit Level

Unequal Health

The reads to help understand the strange and wonderful mindset of Public Health:

The Geek Manifesto, a compelling read on the politics of evidence

Ben Goldacre’s Bad Science

The Patient Paradox by Margaret McCartney

The quirky

Women on the edge of time by Margaret Piercey. Kathryn Ingold suggests this could stimulate councillors’ imagination, vision and ideas

The Jungle by Upton Sinclair  – the importance of social models

The Book of Leviticus (because it chronicles some approaches to population health. A modern version was suggested so here is the NRSV, a modern ecumenical translation and the King James for those of you who prefer that.  For a thought provoking translation try the 1930s translation by Msgr Ronald Knox.

The man who planted trees by Jean Giono

The Book of Nehemiah for , the importance of engaging communities in visioning and building. Again modern version (NRSV) and the King James.

And finally:

Paul Ogden at the LGA suggests Marmot or Brave New World, saying a society in thrall to science and regulated by sophisticated methods of social control.  I thought that was ASDA on a Friday.

I’m not quite sure what I could suggest after all that!  Comments welcome.