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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Mindfulness…useful, not a panacea

Thinking of using or commissioning something involving mindfulness?  Good, but have a think about what it is you are trying to achieve.

I like mindfulness, I think it has a number of applications. While it comes from faith traditions, Mindfulness type techniques are increasingly found in non-faith settings. Why? Because Mindfulness seems for many people to have salience and usefulness in a range of situations including living with chronic illness, coping with stress, and coming to acceptance of one’s own identity.

Pace, for example, say it has value for LGBT settings and people among a range of other techniques and tools. It has been applied in long term conditions like neurological conditions and in Hertfordshire currently this is being researched by clinical psychologists.  At its heart mindfulness points us to the need for balance in our lives and relationships, both interior and exterior. And we should welcome this as a good step. Try the Royal College of Psychiatrists site for some good resources.

Mindfulness and cognate spiritual traditions: the balanced life

You may not think to look at or listen to me, but silence and contemplation are things I try to practice for a period each day. (Ok, stop falling about laughing, I am actually being serious. The experience of being centred each day on the relationships and the things I value are essential to me. As a Catholic and someone with an attachment to the Carmelite tradition I call this an aspect of contemplative prayer. As a psychologist I call this focusing using techniques which are essentially similar to mindfulness.)

And in the 500th Anniversary of the birth of the Spanish Mystic Teresa of Avila  (the great Carmelite reformer) it seems a useful time to take a look at some of the stuff,  healthy and not so healthy, which seems to be trending on mindfulness. Like any good thing which is trending, it seems that in the midst to rush and take up mindfulness-based techniques, we are busy both forgetting some of the things about its origin and tradition we should bear in mind, and at the same time not overtly doing the work of finding a framework into which we can place mindfulness as one of the tools for a balanced life.

Lessons from the origin and tradition

Mindfulness is NOT purely a Buddhist concept.  Almost every major faith tradition has some form of focusing or contemplation with methods, insights or rules similar to mindfulness. I know it’s enduringly trendy to see Eastern philosophies and religions as more simpatico to our atomist 21st century ultra diverse lives, but even in Christianity alone I could point you to multiple Catholic, Anglican, Presbyterian and other traditions akin to Mindfulness, starting with Early Monasticism and working through Carmelite and Quaker mysticism.  The Practice of the Presence of God, for example, is just one offering from 17th Century France.  And the Jewish and Muslim traditions are just as rich. Rant over.

A good thing psychologists have done is extract what seems to be a core of Mindfulness based technique and apply it to settings without explicit religious or spiritual overtones. That means it can have a wider application for some who find the religious or spiritual overtones off-putting or difficult.

But there is something being missed here…most religious traditions which have had techniques analogous to mindfulness for any length of time have developed in tandem with them tools and tactics for when all does not go smoothly with meditation type techniques. And this happens more than you might think. Miguel Farias and Catherine Wikholm writing in  New Scientist  on 16th May 2015 point out a range of downsides to mindfulness for some people – increased stress, anxiety even significant emotional and psychological difficulties.

What’s going on here?  Simply the fact that Mindfulness isn’t for everyone and some people collide into what in one Catholic (Carmelite) tradition is described as the dark night of the soul ; a period of aridity, darkness, futility, depression and loss.  Another form of what is going on is that if you really deeply hate yourself or have many unresolved issues, then mindfulness can bring you face to face with things you really may not like about yourself, feelings you may not always attend to, or may even supress. And when they are there in front of you, it can sometimes be overwhelming.

Using mindfulness in someone who has a life-threatening condition can bring them to the reality of their mortality in a way which can actually be overwhelming and cause panic, not calm, if you don’t help and prepare. And for some people with long term conditions, mindfulness can bring them face to face with their frailty and limitations rather than help them cope.  Some research seems to suggest outlook and personality factors could be important in determining when mindfulness helps and when it doesn’t. But as yet the traditions built up over long experience seem to have a handle on this which psychologists applying mindfulness are still to fully reckon with.

Spiritual traditions have ways of dealing with these issues and experiences, built up over centuries. Mindfulness-based techniques taken out of faith settings may not have.   But they need to develop them. Techniques like recognising when some people should be steered away from Mindfulness, how to build support in if aridity or desert experience or painful things come up are all important. And some practitioners and teachers both from a spiritual and non spiritual background do not seem to apply these safeguards.

We can add to this the fact that despite some neuroscience and some experimental psychology studies, we still don’t really know exactly how mindfulness works. We still are not yet fully clear of the mehanisms of mindfulness in a way we can really explain. This means we still need to be open to learn about where Mindfulness-based techniques are and are not useful.

I believe Mindfulness is not for everyone, contrary to what some commentators say. If you absolutely hate yourself, then training to focus on that and being left to sit with that can be devastating for some people rather than a spur for development. There can be a core of mindfulness type techniques that are probably very broadly applicable (focus, being in the moment, dealing with various cognitive and interpersonal demands across the day by focusing on the present) but let’s not assume this is a panacea. We did that with Nudge and got disappointed, and sometimes ended up using nudge less than we should have, just because it didn’t do everything we wanted it to.

Integrating Mindfulness into a coherent picture

It’s interesting to me that all the teaching sessions I have been asked to do on mindfulness in the last year were focused on how to integrate mindfulness into a public health, or psychological, or religious worldview. The most recent one was a study day for a mixed group in St Albans Cathedral (psychologists, public health types, therapists, ministers and others) which showed roughly similar issues across these disciplinary boundaries:

  1. An interest in mindfulness
  2. A knowledge of some of the techniques, sometimes very advanced
  3. Limited or little knowledge of what science there is behind it or even how mindfulness interacts with the biology of stress
  4. A searching for how to integrate mindfulness with their worldview, professional values and practice

Being clear about why you use or commission mindfulness is hugely important. We are not in a supermarket here, and treating spiritual or non spiritual forms of mindfulness “type” work as a “pick and mix” risks instrumentalising the technique and ourselves, and trivialising the issues behind mindfulness.

Having an eclectic methodological disposition in practice of psychology, public health or pastoral care is all very well. But not examining the fundamental assumptions behind a tool or technique means you can end up at best being inconsistent between values and practice, and at worst harming yourself or others because of the dissonance caused by that inconsistency.  If you believe everyone should use mindfulness to look at themselves, you have to put in place things to respond and keep people safe when what they see is something they find distressing. Equally, if you believe stress at work is at least partly or even mainly due to poor psychosocial work environment (and there is some good evidence to support this as at least one major factor in workplace stress) then mindfulness as the only answer is a cop-out, placing the onus on the employee when the solution really requires the organisation to change or act. Using mindfulness to make people more resilient to systems which dehumanise or dysfunction – whether care, education or employment – is neither ethical nor sustainable.

Kate Williams, writing in The Psychologist says that she is ” a strong believer in MBIs and can see the benefits it can bring. Yet we must remain ‘mindful’ of how we promote and talk about mindfulness to ensure we carefully promote its use and application to mental or physical health issues whilst in the early days of its research. If we can avoid overstating mindfulness as a gold standard or panacea, those new to mindfulness can start to practise with realistic expectations, under suitably qualified courses, and can begin to experience the wonderful world of mindfulness meditation.”

So, use mindfulness, but think aboutthe developmental nature of this field.

 

Leadership…it’s not all transformational in public health

I don’t know about anyone else but when I was training in Public Health, things like leadership education were largely missing. I was lucky to get onto the national Public Health Leadership programme over a decade ago now, and even luckier to have other training.

And yet leadership is an absolutely central function in public health, and leadership across systems especially. http://www.slideshare.net/jamesgmcmanus/leadership-and-ds-ph-update-oct-2014

You’ll be aware from a pile of postings, articles, slideshares and other stuff that I have an interest in (obsession with?) leadership in public health.  This is at least partly due to reflections on my own failures and a desire to try and get it right. And it’s partly due to my training as a psychologist. In the last few months I have reflected again on my own leadership roles but also have done a number of sessions for new public health leaders.

One thing I have noticed is that Transformational Leadership models seem to be the flavour of the month at present. I have found transformational leadership models, especially when adapted to the public sector (e.g. the work of Beverley Alimo-Metcalfe on local government) very helpful. Try these links for more reading on this:

The last link above on Post Francis enquiry approaches is especially interesting.

But there are some challenges with Transformational Leadership models, before we go running down the road to apply them in preference to anything else:

  • Some commentators feel transformational leadership is better in an organisation. When you work across a whole system, as public health leaders need to try to do, there are additional behaviours, styles and tactics you need, and you need to flex your style much more as a system leader across different organizational cultures than just transformational models would suggest
  • Transformational leadership training is not always good at explicitly integrating the scientific background of public health senior roles with the leadership tool portfolio they need
  • There is a very thin line between transformational leadership and dictatorship or bullying. Engaging people in your system and organisation is hugely important with transformational change and leadership and rightly many researchers are now emphasising this.  Beverley Alimo-Metcalfe, who created among other things the Local Government Transformational Leadership questionnaire, has spent a great deal of time on the importance of this.

Dennis Tourish’s new book The Dark Side of Transformational Leadership (Routledge, 2014, £24.99) is a salutary read on the strengths and weaknesses of Transformational Leadership as a model and theory.  He presents a significant amount of research on transformational leadership and case studies. The book has a good style, discussion questions and reflection questions and if you’re looking for a CPD text then do yourself a favour and give it a go.  Even if you only read the last chapter on new styles of leadership and better ways of thinking about leadership.

But he makes a range of important points that Public Health leaders who are attracted to transformational styles:

  1. Tourish spends some time in his book looking at the (usually catastrophic) consequences of leaders with vision whose decisions have not been challenged or helped to mature by being reflexive or open to others. There is always the potential that leaders in trying to transform do as much harm as good
  2. Unregulated power in a leader (I’m sure many of us have been there, on whichever end) is not a good thing and a key part of leadership in a system is about being held to account as much as holding to account. Leadership seen as service, as enabling a system is better at that
  3. Transformational leadership models in people who think they know better than anyone else can become a justification for arrogance. Public Health has not always been a stranger to that arrogance about its role, importance and abilities.
  4. Transformational leadership which is all about the leader and not about the team or organization or structure can have, like any leadership style, profoundly negative consequences on others.

Transformational leadership has its place. But if you are a public health leader in a system which doesnt want you, or is dysfunctional, or where others think they know your public health job better than you, then I am unsure that transformational leadership is the solution. An adaptive style which enables you to assess situations and use a menu of styles, tools, tactics and mechanisms is more likely to be helpful.  And indeed much recent research on leadership seems to be showing that across mutliple context systems that works. http://www.slideshare.net/jamesgmcmanus/adaptive-strategic-public-health-leadership

Trying to apply this is an interesting process, and I sat down one day with a group of colleagues when we were sharing challenges and perspectives. I have some rules of thumb on leadership which seem to be working at present:

  1. There is no Perfect style or perfect leader:
    • I will never be a perfect leader and there will always be fallout from what I do. But thats not an excuse not to do better. Doing better is the whole point
    • There is no single model of leadership which is right.
      1. The best “model” (or rather frameworkk which enables us to take different bits of different models) I can find at present is that of distributed, adapted leadership which is about leading systems. It takes in a range of elements including the transformational. You can find my presentations on this here   
      2. Leadership is a journey towards being authentically you and truly effective. That journey never ends and we can all always do better
  2. As with all public health, science and art must be held in dynamic tension to be effective and authentic
    • The science of leadership, good solid psychological science, needs to be taken seriously. But the more science I read on leadership, the more I realise it’s just as much art as science.
  3. Sources of reading and learning
    • Do yourself a favour and check out reviews in decent journals like  Harvard Business Review, The Psychologist or Management Today rather than buying blind in a book shop
    • Rarely trust anything you buy in an airport book shop
    • Do Read Harvard Business Review (even if you do find it in an airport bookshop)
  4. Models can be deceptive
    • If a model or course sounds too good to be true (you will become an amazing leader in one day) it usually is.
    • Be sceptical of people who espouse a model of leadership but have never led in your context. (If you haven’t spent a day in local government, how do you truly understand the context? .)
    • Models will change and my learning and style should change as knowledge develops
    • Over-reliance on one model is usually unhelpful because it limits your grow
  5. Think of Frameworks not models
    • A framework tells you what sets of thing you may need to be doing rather than prescribing “this is how you do it”. These rules of thumb are my framework
    • Ethics, Values, Vision and Context are as much a part of any good framework as tools and tactics and inventories
  6. Leadership cannot be context independent and be effective
    • Leaders are set into not apart from the contexts they serve (so the “independence of the DPH” needs to be handled carefully here).
    • Beware the “high” doctrine of leaders as great individuals. The context and the people make the leader as much as the leader.
  7. Leadership is a service to the common good or it is nothing
    • Leadership is a portfolio of influencing skills and tactics to get to the common good (ok this is my bias, but I bet you have one too)
    • That desired good will always be changing, like everything in life
  8. As the recent Kings Fund report suggests, as a leader across systems you need to be comfortable with chaos. Please note that my and your leadership style creates at least some of that chaos anyway!
  9. Dont expect people to be gentle and trusting of your leadership style if you cant spend some time being gentle and trusting of you and them
  10. Four golden functions: Nurturing, Guiding, Healing and Reconciling and Discipline (I dont mean sticks I mean holding a line and standard to keep people to) are important in leadership, and you need to be a receiver as much as a giver of these
  11. Leadership always has a dark side or down side
    • It may be just the fallout from your style. It may be just the dysfunction of being human and imperfect. But leadership ALWAYS has a down side, at least for some of those your leadership touches. If we don’t deal with this openly and work out what to do along the journey then our leadership is unethical.

Anyway, these are the things that help me. It may be different for you. Let’s help each other on our journey.

Influencing and tactics – some thoughts

We’ve been busy writing a review of what we’ve done and achieved since 1st April 2013, and from that several things have emerged :

  1. Our decision to invest in programme management infrastructure working alongside technical public health capacity was the right one. We have delivered over 143 workstreams in public health since April 2013, according to our overview spreadsheet (also known as “the workbook of Aaaargggh”.) This has won us a reputation for getting on with things.
  2. There are a few areas we need improvement in, like continuing the upward trajectory on chlamydia testing and so on
  3. The skill set needed to do public health in local government is a hybrid – technical skills + programme management + influencing + system wide working
  4. You need to have a game plan- a simple statement of where you’re going

And we had a fantastic Association of Directors of Public Health conference earlier this week. I got to spend an entire day with my  Cabinet Member, listening, learning and sharing together.  A really important thing to do. And her perspective had a good degree of helpful challenge from someone with significant political experience.  Which led me to reflect on and refresh my game plan. Sometimes the best conversations we have are not in the formal briefings but in the informal 1-1s we have over a meal, a coffee, or the brilliant café just along from local government house in Smith Square when we’re there for meetings or events.

The ingredients of game plan delivery

In order to get your game plan delivered, you need a series of things. Programme management, leadership and a host of other things.  But most of all you need people who believe in what public health can do at all levels, especially when there are sceptics or you come up against people who disagree with you, for whatever valid reasons.

I suspect I take a slightly different perspective on influencing from some colleagues in public health, and this obviously reflects my learning by experience (good and bad) having been a local government officer or worked in national roles with local government for more of my career than I was in the NHS. So, for what it’s worth, here’s my ramble  about this. I know lots of people may well disagree with me but the approach below works for me.

Influencing and “speaking out”

It seems to me we use this as a profession far too liberally.  The issue of “speaking out” is something which can be done in a range of ways, and sometimes speaking truth unto power is better done in quiet rooms though sometimes it must be done forthrightly in public. In both circumstances it is better done when all the public health family of agencies can see eye to eye.   But the point is not that agencies in the public health family “speak out” together. Writing letters to The … (insert name of newspaper or journal)  has to rank as one of the most ineffective influencing tactics of all time.  It’s done by most tacticians in my experience to underline an existing influencing tactic, and then sparingly. Useful as part of a tactical plan as one mere strand but in and of itself faintly pointless. And frankly, the immature party political “yah boo” noise coming from some of us just makes us look ridiculous. The trouble with schoolboy shout and pout politics is that you are forever seen as an outsider. You may feel good , but you are almost certainly not doing good.

There’s more than one way to influence and speak out, and the public health family could learn some valuable tactics from Stonewall, for example. Stonewall spoke positively and articulated how and why, things should and could be done, and built relationships. It’s easier to build alliances than being seen as a constant critic.  It also means when you do criticise that your criticisms will carry more weight.

Game plans national and local

For me the first rule of influencing is a game plan others can buy into. That may mean you need several iterations of game planning before you get where you want to be.  It also means relationships with others are key. And as a public health family some of our agencies excel at this. Others need to do more work on that. The differences between RSPH, FPH, ADPH and other agencies – however important the agencies are to us in what they do – can seem bewildering to people outside public health.  I look forward to RSPH, FPH, SSM, UKHF and ADPH bulletins because they give me valuable stuff.  And if you have to look up what the initial mean I think that only reinforces my point about bewildering array of agencies.

But there is an achingly heartfelt prayer for Christian Unity I love in the Scottish 1928 Prayer Book which prays “Give us the grace to lay seriously to heart the great dangers we are in by our unhappy divisions.”  I pray that in the family of public health agencies our differences do not become unhappy divisions. But it is time to lay to heart the need to work and understand together, and indeed our agencies are meeting and working together. In policy terms when we’re all asking government for something different, it makes the job of government to do public health more complicated than it needs to be. 

There is one enormous benefit to having such a number of agencies – if we really get together we can constitute an effective policy network at national and local level. Policy Network approaches are things I have written about before and have been enormously successful in some areas of policy. The public health family of agencies could be such a policy network. There are groundrules about how these work well. I’ve been part of one for 13 years which has lobbied on equality issues and recently by working directly with people who we have historically seen as opponents we have actually secured very quietly a change in national policy. And I have the gift of some new friends and colleagues I admire and respect. On our own, we would never have done this. I’ll write more about policy neworks another time but there is a respectable literature on it, especially in the Journal of Public Administration.

Articulate the possible

And this brings me to my second golden rule of influencing from experience: articulate the way forward in a way which makes it clear to do and buy into.  Two proverbs I try to bear in mind and I forget the authors – “if you can’t explain something simply, you don’t understand it well enough” and ” to complicate is easy, to make simple difficult.” Our challenge is to do that.  One of our Cabinet Members says that I can in the right time and place be ” a cantankerous git”  and “I love it”  (I prefer to think of it as robust and thorough). He can read a forty page document and spot what’s missing in ten minutes. And he can sniff the absence of a clear, simple, well articulated plan in the air long before it arrives.  I always think of him and three others when getting people to put together a plan.

Relationships

But the single most effective tactic in influencing I have ever used is investing time in building relationships. And if you want to do that with elected members please leave any ideas that your primary tactic is negotiating skills. Because that bombs in my experience. Mutual respect, an acknowledgement of their importance, an acknowledgement of my role, and a lot of effort on my part to get inside their heads and work out what they are trying to do is the key. And that has always paid off.  And they make just as much effort in my experience to work you out.  Whether their working you out is supportive is not is partly down to how well you engage from the start.

When members “get” the public health agenda, things start to motor. That may come down to some negotiating, but frankly it’s usually the last tool out of the bag. Articulate the outcomes and reasons in ways that resonate with their agenda. If you cant do that, then find a member in another authority who will mentor you.  DsPH as chief officers need officer and member mentoring often because we haven’t had the experience of working with members that other more long-standing chief officers have.

It may sometimes come down to you giving advice that a course of action would not be right, and sometimes even having to be robust in that advice, but the importance of DPH and members “getting” each other – a mutual understanding of each other’s agendas, limits and game plans – is the crucial thing. And being able to express public health ambition in the language which meets the ambitions of members is important.

A kick up the noughties

A next rule of influencing is be ready to renew and change your tactics regularly. Dominic Harrison the Director of Public Health for Blackburn with Darwen said at the PHE conference that “we have a definition of health coined in 1948, competencies set in the 1970s and we call ourselves change agents.” That comment made me go “ouch” and hug him at the same time.  He has a point, expressed it well and it resonated round the room with many. There are many ways to advocate change, and “speaking out” if it becomes a default just means you get isolated by the system. Our challenge is to be effective at being change agents, and so we need a large repertoire of influencing methods.

The independence of the DPH

The new system makes us an advocate and advisor for public health. That doesn’t mean we are independent of our authorities and in the NHS independence for non medics like me was really, I feel, a myth. I would argue it’s also a distraction. Constitutionally and legally being a Chief Officer in a local authority means a number of things about sharing corporate responsibility for the running of an authority.  (That’s written into my appraisal .) That provides me with far more opportunities to influence for public health than any speaking out would ever give. We are not, as DsPH, independent voices from our employers. We need to live with that and work out tactics for influencing which work within that.  Independent advocates eventually get streamrollered or ignored.

My ability to speak out now is no more compromised than it ever was in the NHS. As a non-medic (and remember there have been test cases on this) one did not have in either Agenda for Change or local authority contracts anything like the same contractual freedoms and leeway our medical colleagues would have been able to lay claim to about writing independently to the BMJ, for example. Speaking out in some ways is a very good sign either that relationships have broken down or the person speaking out doesn’t have the skills to influence in a different way.  Going back to Dominic Harrison’s pint about being change agents, the world has changed and we need to change how we change it.

So I think there are different styles needed for DsPH who, like me, are one of six Chief Officers charged with corporate responsibilities and those DsPH who are not chief officers.  And there is a nuance of approach we need to develop for those DsPH who are in local authorities which are uncomprehending, indifferent or where there are issues, however they arose.

Building the influencing skills

We should be supporting each other through providing leadership and influencing skills while the faculty nationally also does its lobbying and speaking out. For me that leads to two things in particular:

 a)    How we skill up DsPH to do their influencing role effectively and to take a leaf out of their more experienced chief officer colleagues in some respects.

 b)    being clear on boundaries, tactics and occasions.

 The upshot of this is, I guess, that I am saying we need to get much more sophisticated individually, as a profession and as system about this.

There are small groups of Directors, Consultants and others in public health who meet in learning sets around the country.  The ones I know about are about how people work as a network to influence and get what they need to deliver public health.

Values

A final word about values. If all this seems devoid of values, then you are missing the point. The whole point of this is that values are at the centre. If you don’t have values, why influence anything? Values are essential.

Public Health values about social justice, equity and so on are or ought to be at the ground of what we do as public health professionals. But just don’t assume that can only be expressed in one type of philosophical or political language. Public Health Influencing is done in context, and different contexts require different styles and languages.

For me, Catholic Social Teaching is a fundamental set of values which at least in part determined why I went into public health in the first place. You can read more at http://www.catholicsocialteaching.org.uk   And if you don’t believe that can be applied in a range of contexts including the corporate world I invite you to check out Blueprint for Better Business,http://www.blueprintforbusiness.org/Home which numbers some of Britain’s biggest corporates in its values-based agenda.

This may or may not work for you. Game plans, influencing tactics and personal styles are personal. But we do need as a profession to get more sophisticated.

What doesn’t kill you…what having lymphoma taught me

Lymphatic cancer awareness week is nearly upon us, and several people have said on numerous occasions I should blog  this experience, and a few of you have reminded me I haven’t done it. So here it is. Sorry, I think it took a while to feel this was ready to share quite so widely. This is a personal account . I haven’t wanted to share it because it somehow felt slightly self indulgent. But thanks folks, for nagging me into this.

I can only speak for myself. Some of you may find my perspective uninteresting or indeed you may find my sense of humour and dealing with it not something to your taste. All I can say is, this is how it went with me. And my apologies for the length.

Between December 2012 and April 2013, I had one of the most incredible experiences of my life, and one which has had both struggle and value. I had non hodgkin’s lymphoma, four months in hospital and four cycles of intensive (understatement!) chemotherapy.

But I’m busy enjoying the fact that I’m still here, and back at work.

As I write this I have had a session with Tony Kidd my amazing personal trainer where the muscle mass I lost (27kg) has been replaced, and from starting with Tony to get me doing exercises just to be able to strengthen my posture so my knee didn’t keep coming out of joint, I can now bench press 4/5 of my own body weight and leg press 300kg. That’s a long way from March 2013 when I couldn’t climb a flight of stairs without stopping for a rest after every third stair.

A funny thing happened on the way to the gym

I noticed a lump in my armpit one day which I thought had been caused by a sports injury at the gym. My GP felt it was probably an infected cyst.  And kept saying that until I pushed the issue. Only it wasn’t a cyst, one clue was in the fact it kept on growing despite three packs of antibiotics. I waited so long for referral for a scan I organized my own, and two days later was in front of a different GP, being referred urgently for an NHS CT scan. This happened quite quickly.

Interestingly, I still have had no contact with my GP nearly eighteen months on, though I have my copy of an impressive ream of letters from the hospital to them. They haven’t even invited me for my ‘flu jab despite my pushing them. We still have some quality issues in primary care to address!

Anyway, by the time I found myself in front of an impressive, capable, business-like and organized consultant Haematologist at Queen Elizabeth II Hospital in Welwyn Garden City

I had six tumours, one in my left armpit which reached round my shoulder and was 22cm, another 23 cm in my abdomen and four smaller ones elsewhere including one in each jaw/set of gums. I have never seen anything grow so fast. It was like being in a sci-fi movie.

It was a fast growing, high grade lymphoma. My family has a history of cancer including leukaemia so let’s be honest, it wasn’t good, but really, it could have been worse.

I was sent upstairs to Ambulatory Care  to await her doing a bone marrow biopsy (ouch) and tumour biopsies (nothing special after having my hip hammered into), and by the time she finished clinic I had gone from an outpatient referral for a fortnight hence to an inpatient referral to UCL the very same day. She probably saved my life.

The good thing (and it was a good thing, looking back) is that being so fast and aggressive it was very responsive to chemotherapy, so everyone kept telling me.

A really good MacMillan Nurse, that wonderful Haematologist at Welwyn, the fabulously irreverent and generally wonderful Dr who ran the Ambulatory Care unit at Welwyn with panache, compassion, joy and humour. And then the huge and impressive team at UCL.  The Welwyn team were trying to get through to me that there was hope while I was busy wishing I could be sitting in a street cafe in Rome, Barcelona, Madrid or Paris rather than watching it snow outside a 1950s hospital block while being in phsyical pain and emotional distress. And lots of cups of tea from the nurses with their tender and solicitous humour were amazingly therapeutic.

The journey through specialist care

After amazing diagnostics and care at Queen Elizabeth Hospital in Welwyn Garden City I had equally amazing care in Wards 13 and 16 and the MacMillan Cancer Centre at University College Hospital, London. If you ever wanted to see nurses and doctors, clinicians and staff dedicated to putting people back on their feet, look no further than these places.  And when I moved to the UCL Macmillan Cancer Centre, staying in the Cotton Rooms at night I had the ability to experience an awesome form of care there. One day I opened HSJ (Health Service Journal) and there was an article from an NHS Manager who had twice had lymphoma praising the very place I was being treated in.

Little projects helped….sitting with the wonderful Dame Jane Roberts in the cafe at the Cancer Centre while we both wrote the introduction to the British Academy report on health inequalities was surreal but rather fun, looking back. (Americano with your rituximab, Sir?)  When I got to ambulatory care the epic trip (actually 180 yards) to the little Italian where I’d get halfway through a bowl of pasta and the waitress would scold me till I finished then make me eat a sliver of pie was another project that took hours to prepare for.

The doctors were confident from the start I could be functionally cured (or have a complete response if you prefer.) Even when I got fairly ill, anaemic, neutropenic and with two infections and the palliative doctor wandered in one day they hadn’t given up confidence I could respond. The chemo was tough, but encouragement was always there.

My chemotherapy was M-Codoc R / R Ivac, which was two cycles of 15 days and two cycles of 5 days.  And seven or more days of aftermath at the end of each cycle where your body deals with having been flushed with something which has all the subtlety of Domestos. I have never known nausea or fatigue like it. Mind you, I have never seen tumours melt away so quickly either. So let’s keep this assessment balanced. It worked!

There were days I couldn’t find the energy to read the paper, and days when I devoured every piece of reading material which came in my direction. Dreadful food, though. We really need to do something about hospital food in this country.

It does seem to me that the inpatient bit of the hospital was not geared up for self management or for patients to keep some form of productive living while going through treatment, though. We need to do better at this.

While the pain was the worst I have ever had, I learned how to cope. And mercifully, it didn’t last more than a few days at a time, and then became low enough to manage using psychological techniques.

In at the deep end with the treatment and the pain actually turned out to be a mercy.  I remember I decided I would fill my water jug after my first day of chemo (the little things matter.) I reached out for the door handle (I was off to fill my water jug) a couple of hours after my first dose of Rituximab yelped (ok, screeched like a scalded cat) and then woke up on the floor with the nurses round me. It felt like someone was actually burning the tumour off my shoulder and armpit with a blowtorch.

I declined opiates to relieve pain. Yes, ok, fairly obstinate but I don’t like them. A single dreadful night on opiates was bad enough, thank you. I got through the pain with some paracetamol, the odd tramadol, the occasional well-judged slapping from a nurse and lots of sheer bloody-mindedness. The staff were great and kept offering me opiates especially for the four days of each cycle where I had massive mouth ulcers so bad I could barely swallow water and the lining of my mouth and throat kept peeling off.  But raspberry flavoured morphine syrup is just wrong on so many levels.  I discovered the relief that using soluble paracetamol as a mouthrinse brings after the initial sting. Bliss! Well, for two hours at a time, anyway.

The intrathecal injections were not fun. Sore and slightly scary, with the disbenefit of double vision and headaches afterwards. (But people next door to me were getting daily injections into their bone marrow, so let’s not go overboard, it REALLY could have been MUCH worse.)  One day someone casually mentioned caffeine before and afterwards helped…but nobody knew why. I didn’t need to be told twice. And it worked!

The anti-nausea drugs went through days of working well, and days of not working so well. I had symptoms like gout from the tumour breaking down after they started me on steroids (luckily I didn’t have full tumour lysis syndrome but they were very watchful). I had the menu of

  • constipation,
  • muscle wasting,
  • dehydration,
  • anaemia after every cycle,
  • neutropenia after every cycle,
  • severe fatigue,
  • insomnia (have you tried sleeping in hospital?)
  • multiple infections (chest and elsewhere),
  • a tooth extraction because the lymphoma made my gums grow up over my teeth on one side of my jaw – actually by the time the oral surgeon cut the gum it just fell out –
  • a visit from the palliative care consultant,
  • a fair (impressively large) amount of vomiting,
  • the odd bout of diarrhoea (or six),
  • two falls in the shower,
  • sore back from injections into the spine
  • and lots and lots and lots of mouth ulcers.

I have felt delightfully woozy on very strong antibiotics and totally zombified from fatigue from chemo. I also felt great comfort after steroids and chemo started and the initial few days were over.

Cycles 1 and 2 were, I thought initially, the most difficult.  Raging temperatures after Rituximab turned into raging temperatures after infections. One of the nurses thought I did better on cycle 2  than I did,  and after the first two days I think she was right. In terms of coping with the drugs I sailed through cycles 3 and 4 with the exception of the fatigue, anaemia and neutropenia; even with the mouth ulcers. I’ve never seen so much blood and platelets. Cycle four just seemed to be a walk in the park (all I had were mouth ulcers, fatigue, anaemia and intrathecals ) compared to the first two.

I discovered after I got home, when I read a letter from the hospital to my GP that they thought I had transient encephalopathy  on cycle 2 induced by ifosfamide , one of the chemotherapy drugs , but before they got round to giving me another chemical to come out of it (methylene blue), I came out of it by myself. Why did nobody tell me?

I remember my chemo nurse saying in March that I might be ready to go back to work one day a week in July. To which my response was “f@@@ that for a game of soldiers.” Cue doctors and others to give me an assessment and discuss.  I know myself, and one of the best things in this experience was learning to know what my body, mind and soul needed again. And I needed to get back to work.

Work

Every now and then you work for an organization which you realise is a gift to you. That doesn’t mean there aren’t challenges, but working in Hertfordshire is just such a gift. Colleagues have been loving and good, and assured me that my job was there. They also occasionally told me to get lost when I needed to rest.  And reminded me I needed to listen. Occupational Health and my boss were amazing, creating a back to work schedule and regular reviews. And my PA and immediate colleagues incredibly good. My PA still makes sure people remind me to eat.

Some good things

Going neutropenic after every cycle of chemo was a pain, not least because when you actually feel like eating, most of what you want (Strawberries, salad, sushi, rare steak, anything with taste) you can’t have. So getting to fruit and salads when I got back to normal after each cycle was a joy. A real boon.  I was still losing weight, though. A friend started feeding me scones, chocolate and anything else he could bring. This worked better than the high calorie pink emulsion of fat and milk protein they gave me, which usually spent thirty seconds down and then came back up straight away, all over the floor.

And one day when I was told I could go for a walk I went to Waterstone’s, had a coffee and bought a book. Another day I took a bus to Westminster Cathedral, sat down and an hour of quiet and peace passed. Which was just as well, I was so exhausted by the time I got there I didn’t think I’d get back again.

I had communion every day, often from a chaplain who herself was being treated for cancer. That was poignant, and educational.

 

What I have learned

  1. Yes, obviously, my Faith helped enormously
  2. To breathe in and stay calm when a needle is being shoved through your hip into your thigh bone or into your spine
  3. Sometimes it is a case of mind over matter. I was determined to overcome the fatigue. And I have.
  4. Sometimes self-management has to start in sheer bloody-mindedness, other times it has to start in acceptance of your limitations and a realistic assessment of how, whether and when you will overcome them. Being able to assess realistically what your options are helps.
  5. To rejoice in the small things when you can rejoice in nothing else

 

The thanks

  1. A million folk from the Chaplaincy
  2. The pack of visitors from Birmingham on Christmas Day
  3. A loving, caring family who sat quietly when I was too exhausted even to speak, washed my clothes and bedding, and loved me
  4. The Lymphoma Association and their amazing information and resources
  5. ditto MacMillan Cancer
  6. Friends who fed me and visited me and cared about me (including the visit late one new years eve by a colleague on his way to a dinner)
  7. The gifts from folk I worked with – chocolates from the church,  teddy bear from the LGBT network, the book from the BME leaders network and the flowers from the Bishop.
  8. The nurses…twenty times over. From the ward nurses to the chemo nurses. I still remember the chats and the laughs and watching the new year’s eve fireworks from ward 13.
  9. The doctors, even the complete Control Queen ( I mean very efficient and organised) Dr Beth, who was great but spent more time shoving needles in my spine for intrathecal chemotherapy than I care to remember…
  10. The volunteers…especially Rose who had been volunteering for several decades..seriously!
  11. The catering staff…solicitous and lovely even if the food was beyond their control
  12. The ambulatory care centre at UCL (these folk are just wonderful and rightly deserve the Lymphoma Association award for which so many of us nominated them) and the Cotton Rooms. You truly are jewels in a centre of excellence.
  13. Have I mentioned the nurses in ambulatory care?
  14. The guy who runs the newsagents in the Cancer Centre who had New Scientist, Nature and a cheese and ham croissant (which on a good day I ate most of across the day) waiting for me every thursday.
  15. The OT and Physiotherapist who helped me with an exercise regime that I could do in bed, even if it did look profoundly silly.
  16. The staff at Wellcome Foundation the day I managed to walk from the Cancer Centre in Huntly Street to the Wellcome Foundation, drink an earl grey tea and eat a scone. It took me an hour to get there, and nearly two to get back. And I couldn’t lift my own tray to my table. But I did it.
  17. The medical team and research team (being on a clinical trial can be quite interesting.)

Could do better

  1. The food -oh good grief, the food. I remember a three bean salad which was some lettuce, a handful of washed canned mixed beans and a sachet of salad cream. Really??????  It didn’t get much better. I realise some people liked the food. I didn’t. The sausages on Christmas day were nice, though. DO BETTER FOOD FOR CANCER PATIENTS!
  2. The dietitians…Oh dear. You pontificated from the end of a bed in a way which made me feel leprous, not to mention small and inconvenient.  The first one of your team I met had all the empathy and warmth of the sun glinting off the nails on a coffin lid.  I mean seriously, how can it take two weeks to refer someone, a week to get an additional diet pack ordered and delivered and a month to get the contents right?  I’d like to sit you down one day and ask in what parallel universe does a professional dietitian recommend salty foods and hard crackers for a patient whose mouth is full of ulcers from chemotherapy?  This should be basic.
  3. The initial “let me tell you loads of things about your chemotherapy”, scared the bejeesus out of me and meanwhile an hour of my life went go by where all I remember is being increasingly alarmed by what would go wrong during my chemo. I know you did this for the best of reasons and not sure how else you could do it, and actually very little went wrong. But the forty page information pack: AAAAAAAaaargghhh!!!! It left me confused, bewildered, scared and hurting until we spoke again. There must be a better way?

 

Accepting what happened

Now, contrary to what many folk say, I do take some things seriously. The people I love, the work I do, the family I have and lots of other things. But I like to have a bit of fun. Not a lot of point in life if you can’t.  I believe I was put here to live life to the full. And I like to lampoon things a bit.

I only partly jest when I say that the Lord is clearly not as anxious for me to join Him as we all first thought, which is a relief to Him, and an opportunity for everyone else to practice forbearance. I told  a version of this joke to a health audience. Cue embarassed silence apart from one guilty snigger.  I told it to a church audience. They howled with laughter. Being real about out mortality doesn’t mean we have to be sombre about it.

But as I look back, I assimilate the experience more and more. More than one person has had  cause to say to me “you just said ‘one of the good things about having cancer'” and pointed out to me how jarring this sounded. But it is true. Some dreadful things have happened to me in my life. And I wouldn’t necessarily wish it otherwise because looking back they have all made me who I am today.

Don’t get me wrong, there were some truly dreadful experiences, not least the weeks of no sleep, constant discomfort and regular pain leading up to diagnosis. I remember those nights through November 2012 of getting five minutes rest at a time before having to change position. In the end I spent three weeks “sleeping” upright in a chair.   Acupuncture relieved the pain in my side despite my scepticism about the evidence.

I learned some patience, I learned to empathise with others, I learned that I could cope with some pretty serious stuff and I learned that sometimes we just have to go through things. And here I am, hopefully out the other end, for how long we don’t know.

I also found it helped enormously to take the piss, quite frankly, out of the disease and the treatment regime. Some of the names of the drugs…methotrexate, ifosfamide, doxyrubycin…sounded like characters from a cheesy sci-fi movie. I could imagine Doxyrubycin, the curvaceous and sexy flame-haired harbinger of vengeance fighting off the evil Methotrexate in a battle to save the Neutrophils, the peace-loving agricultural people of Neutropenia. (A Freudian would say this was manic defence. But when things get tough you find ways of coping. So nuts to Freud. This was about coping by helping me feel more important than the disease while undergoing effective treatment. Try it with your health challenges if you’re sceptical.)

 

Building back to normal life

I am in remission. I still have a bit of short-term memory problem, for names especially (apparently folks call it chemo brain), have no feeling in my right foot and a bit of my right leg and no feeling in a bit of my mouth. My jaw was put out of kilter by the tumours so I now have an overbite and misalignment and endless dentistry from tumour damage to look forward to. My eyesight has gotten very slightly worse. And now and again I get pain in the tumour sites. Occasionally it feels like my armpit has toothache. I still get very dry skin. But all this is a minor inconvenience really compared with what has happened.

My faith was obviously very important and still is. I went into hospital in Advent, and came out during Holy Week, which for a Catholic is both ironic and poignant. I got a sense one day, after I had received the Sacrament of the Sick, (what we used to – wrongly – call the Last Rites) that everything would be ok. I can’t explain it, the psychologist in me can’t even begin to put words to it, I just knew.

This thing is unlikely apparently to come back. I may get a different cancer. I may die of something else.  I might take up underwater windsurfing…I don’t know.  As a Catholic I am taught to cherish life but embrace death when it comes. And I hope I will be able to do that, but with St Augustine, pray that it’s not yet.  People cope in different ways. This was mine, accept what I had to, assess the situation, work to do what I could and make sure I was in charge, not the disease.

There is much to cherish, and for as long as I am here, cherish it I will