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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Linking up Health and Faith: re-learning old lessons

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The Ecstasy of Saint Teresa by Bernini. Santa Maria della Vittoria, Rome

One of my scientific and theological interests has, for some time, been dialoguing scientific evidence on health and medicine with faith.  I believe dialogue between health and faith needs to be scientifically, theologically and epistemologically rigorous in equal measure.  A growing body of robust scientific research is remembering what people of faith seem to have not quite forgotten, than people mediate their understanding of health, and their coping and living strategies, at least in part through their belief systems. That has profound implications for our health and wellbeing.

 

 

Some practical examples

Less than a month from now, in October 2017 a new series of videos, and in November a website Positive Faith will be launched as one embodiment of this. This will be series of videos and resources by, about and for people living with and affected by HIV. This exercise has been funded by Public Health England, and led by Catholics for AIDS Prevention and Support.  The resource privileges the voices of People with HIV over professionals of any kind. People with HIV explicitly address these issues of health and belief.

The FaithAction health and faith portal remains, for me, one of the great things to come out of Public Health England’s partnerships with the community sector because it works at applying these lessons and collates practical examples.  There are many more. I have been privileged to work with  FaithAction for some time. Their report contextualising the evidence on faith and health for UK commissioners and policymakers is important reading.   Their work on mental health and dementia friendly places of worship has much to offer a prevention and community engagement agenda.  FaithAction have created a series of resources for commissioners, practitioners and faith communities to use together.

A series of Catholic mental health demonstration projects has been delivered.  A mental health access pack for Churches – written by professionals and experts by experience – has been created by a charity whose values commit them to work on disability and health. You can read my invited blog on why I endorse the pack, here.

The University of Leeds with Leeds Public Health team has explored the links and barriers between religion and public health in some really exciting work on mental health.

I don’t claim any of what I say here makes people of faith better or more special than those of no faith in the world of health and care. I merely say that we have legitimate and understandable motivations and values to be in that world, and we have a contribution to make every bit as valuable as anyone else.  And our values inform that. We can no more leave our values or identity at the door that anyone else.

Faith cannot be the one “protected characteristic” that is private when every other one is recognised to be part and parcel of the person. But that’s for another blog.

The scientific evidence behind this

Most of you who know me well know this is an area of interest. I do my job because of my value base.  Early next year my review article on some of the best recent publications in health and faith will make its appearance in Reviews in Religion and Theology

In the process of entertaining this interest I have amassed a smallish library of 200 volumes in several languages, including volumes which stand out like Ellen Idler’s (the polymath Epidemiologist and Sociologist) recent and rather excellent Public Health volume on Religion as a social determinant of public health , the brilliant theological/philosophical work Flourishing by one of my theological heroes Neil Messer  and a range of materials on psychology, psychopathology and religion.  I’m preparing this collection (well the stuff in English anyway) for donation to a library where people will get easier access to it.

Faith still relevant to our population

Some of you may think Faith – especially explicitly religious faith – is a minority interest. Well you may be right, but that minority is still between 37% and 43% of the population depending on who you speak to.  We wouldn’t now be so discriminatory as to dismiss LGBT populations because they’re 2% – 3% of the population depending on who you read, would we?   So let’s recognise that our value bases inform who we are, and most of us are part of some minority. It’s inclusion of every minority’s best offerings which makes social life vibrant.

Prof Stephen Bullivant a sociologist at St Mary’s University has undertaken analysis of ONS data (I believe as yet unpublished) which suggests that, for example, Catholics are present in the health and care field in numbers around eight times more than they would be if they were just present in the same proportion as their presence in the general population.  Incidentally, Stephen Bullivant’s recent report on the “No Religion” population is a good read for anyone in public policy.

People still understand and filter their health experiences, beliefs, behaviours and life choices (including the choice to serve) through their religious belief.  NICE guidance recognises that and has stated there is a strong evidential case for its salience in care.  It is folly not to engage with this. My invited paper to the Equality and Human Rights Commission on what this means for healthcare employers in terms of workforce strategy, service quality and equality and diversity law explores the practical and organisational implications of this further.  The growth of non-religious spiritual and pastoral care in our hospitals, recognising that humanists and others who describe themselves as non-theist and non religious, have spiritual needs too, is welcome and valuable alongside care for those who do have religious faith.

The Guild of Health and St Raphael

A short while ago, I was approached by the Guild of Health and St Raphael to become their president, a role which I shortly take on, after a bit of reflection and dithering on my part. I look forward to this immensely.  It came, to me at any rate, as something of a shock. I did the “why on earth would they want me, couldn’t they find anyone better?” And “why  on earth would they want a Catholic? ”  thing. I then thought of suggesting Archbishop Justin Welby before realising he’s a patron already.  And then I thought of Lord Rowan Williams, who’s a patron of something else they do already. Whoops!

In discussing this with a good colleague , she reminded me that she calls me “the health and faith babel fish”. By which she means I seem to be good at translating the field of health to the field of faith. She asked me “do you think the Guild does important things?” “Yes”, I answered. “Does it have a sound theology?”  “Yes”.  Have they got people who are scientifically credible?”  Again, “yes”. Just for starters, the Director, Gillian Straine is a PhD qualified Scientist and an ordained Anglican priest.  “Does it resonate with your desire to make clear the links between health and faith?” “Yes, vey much so.” “Well, then in your own words -get on with it.”   And so, with that kick up the motivations, here begins a journey.

Formed in 1904 to bring together members of the clergy and medical professions to study and promote the healing ministry of the Church, it claims to be the oldest organisation in the UK working in the field of Christian health.  Anglican in heritage it is now ecumenical in outlook. The two Anglican Archbishops of York and Canterbury are Patrons along with the Methodist Church’s President, and now the Guild has let in a – rather stumbling – Catholic President! (What were they thinking, I hear you ask?)  An academic journal is coming. And practical resources. We have plans!

Academic community of interest

The academic community interested in the crossover between health and faith in the UK is growing. From Professor Chris Cook (psychiatry and psychology) at Durham, to the Guild’s newly launched Raphael Institute collaboration with epidemiologists, scientists, medics and psychologists, through to the work of Professor Michael King at UCL and many others I could mention, a body of work is beginning to be pumped out in a UK context examining the links between health and faith.  Similar communities in German medical schools, Swiss Universities,  Italy and, of course, the United States are creating work of use and value to the public health community.

Putting effort where my mouth is

There are a number of reasons why I am delighted to take on the role of President. First, Health and Faith, and the links between it, are an enduring interest.  My paid professional role as a Director of Public Health seeks to improve and protect the health of a population, something to me which resonates deeply with the call I believe all faiths – including the humanists I am lucky to know and learn from – have to improve human life and hold in good stewardship our earth.  I have written elsewhere, in The Universe about the vocational aspect of this.   And I guess as part of that I need to play my part in dialoguing the health and faith world constructively and rigorously to help us find what mitigates for maximum human flourishing – for those of all faiths and none.  That doesn’t mean those of us of faith leave our values at the door of the office, by the way.

The second is that participation in the work of ensuring people are as healthy as possible, in all dimensions, is a direct participation in one of the ultimate purposes of what most people of faiths do – the cherishing of and service to the human. Visit a Sikh or Jewish social service centre if you haven’t ever done so. You’ll be amazed.

The third is that because of this insight, people of faith have much to offer from “all our best traditions” as the hymn goes to the world of healthcare, and to the whole issue of what health means.  In fact, we were here first. Long before the NHS, before organised health care, we were there.  And people like the Historian of Science Gary Ferngren and others are writing the history of that engagement.

Christian Social Teaching as a Health Inequalities Manifesto

A further reason is that this provides a much needed opportunity to explicitly link Catholic Social Teaching (sometimes called the Catholic Church’s best kept secret) and its seven principles embodying Justice, dignity of the person and so on to issues of health.  Read any book on inequalities in health and a book catholic social teaching side by side and they say very similar things.  People have a right to health, and the means to health including good , healthcare, education and so much else and this is part of doing justice to our world. Good quality healthcare is framed as an exercise in justice and love in such teaching. I can find that link implicitly or explicitly everywhere I look. The founder of the Science of Healthcare Quality and Healthcare Improvement, who was not a Catholic, explicitly defined Quality Improvement in Healthcare as an exercise in love.  The links are significant. For more on the seven principles of Catholic Social Teaching, read here. Recent changes over the past fifteen years in US health care policy have generated a significant body of Catholic thought on Just Health Care policy including a whole body of thought on access. I’ll be discussing my take on what Public Health and Catholic Social Teaching agree on with regard to access, equity, justice and commissioning policy at an International conference on mental health in Oxford in summer 2018.

The fourth reason is that now, explicitly in the policy frameworks of all of the four devolved administrations of the UK, there is the recognition that health has many social dimensions, and needs social actors. This is a Kairos moment – an auspicious time when we can speak into the agenda of what it means to be healthy, and what health and social care is about. We have things to say.  And that means re-energising communities about what they can do on their health.  Faith communities can be a part of this. And examples of good practice here abound, from dementia friendly places of worship to social inclusion programmes and projects for people with long term conditions.

The riches of tradition informs the progress of today

The fifth reason is that while each of us can offer things from our own tradition – I have a particular tradition which feeds my commitment to improve and protect the heath of the population.  I don’t claim it’s better, I just claim it has enduring relevance. Catholics founded religious orders dedicated to health and healing, for example. Countless people we call saints have been engaged in health.  The St Vincent de Paul Society is a Catholic charity providing help from white goods to holiday breaks to clothing to utility crisis payments and has a bigger volunteer workforce than CAB last time I looked.  Entirely funded by Catholics.  Mary Aikenhead, founded the order which created the hospice of which I am a trustee. Her values of advocacy for and inclusion of the most excluded (and said in those words) are a constant reminder to me not to become complacent in a public health system where it would be easy just not to try  to find a way through the cuts being imposed on us.

Those Catholic religious orders still run health and care services across the World and the UK (and over 150 centres from hospices to refuges for victims of human trafficking in England today).  One of those orders is the biggest non-governmental emergency aid agency in the world, among whose volunteers I am proud to count myself. My tradition is supposed to roll up its sleeves, include and serve. (and it often needs a good kick to remind it of that.) Moreover, my tradition attests to the fact that health is social as much as it is individual.  These must go together. No human being is anything other than precious.  Justice, Love and Hope are the hinges on which we embody that insight.

Institutions sometimes get decadent and fail people. That happens in the NHS and public sector as much as it happens in the churches. The point is that continual renewing of our purpose – maximum human flourishing. Every faith which has a sense of the divine is at its best committed to human flourish and justice – even if at its worst we shamefully can and do at times betray and sully that commitment – because we believe that’s what God wants for God’s world.

The whole person

The sixth reason I am keen to do this is because the scientific evidence supports these insights as much as it informs them. We are becoming increasingly aware that health includes the whole person, and especially for those who cannot be cured, health is about making a good response to the realities we face. Like the Guild’s Director, Gillian, I am a cancer survivor, lucky to be alive after a Grade IVB lymphoma. Like Gillian, that experience has shaped how I am rediscovering the riches of the Christian tradition to speak to today’s world on health. Her book Cancer: a pilgrim companion is a brilliant read.

For those with long term conditions or disabilities, those with long term mental health challenges, those who are dying, the World Health Organization’s definition of health as a complete state of psychological, physical, spiritual wellbeing is hopelessly optimistic, and unreal. It implies they are less than fully human, and with that comes the risk they become devalued.  That is not a Christian view. Suffering, limitations and disabilities are not valueless.  It is also not a view that sits with the science of health inequalities, otherwise why bother with the discourse of tertiary prevention?

The World Health Organisation’s vision is valuable, but its valuable because of where it points us. It is future rather than present, a hope for the future. That means we have to revisit what health means here and now. And I would argue that the science and our theology are mutually affirming on this, and the Guild is ideally placed to do that work from the academic work at one end of the spectrum to the work of caring, praying and doing at the other.

Called to serve

Earlier this year, The RC Diocese of Westminster led a season of events entitled Called to Serve the Sick. I hate the term “the sick” but that’s for another time.  The series was intended to be a practical continuation of Catholics being recalled by Pope Francis in 2016 to serve and welcome, when we sometimes exclude too easily.  A series of roadshows, which I was privileged to present at, discussed a Catholic Understanding of Health and Social Care, why Catholics should feel a particular importance of committing to health, social justice and social care, and what local communities can do about it. We had an audience of health and care workers, and people struggling with health issues. And people of all faiths and none. We’ve been asked to do more. There is a demand for this work.

The Bishop who led this season, Bishop Paul McAleenan said that “It is fitting that this season comes as a continuation of the Year of Mercy, giving us the opportunity to practice that most important act of Christian love, care for our neighbour. Good health, poor health, disability and ultimately our death, are integral aspects of what it means to be humans precious to God, and so they are of huge importance to us as people of faith.

On this, I hope, people of all faiths and none can make common cause.