There were wild peacocks in the grounds of the Sheraton Hotel in Tunis' Diplomatic Quarter, which juts out into the circle of calm water formed between La Goulette and the Berges du Lac. Tunisia is still, according to the UK Foreign Office, a "Fragile and Conflict Affected State" (FCAS), with all but essential travel soundly contra-indicated.
Beyond the security fence, serene elderly men in cashmere cardigans, powdery relics of Tunisia's ancien régime, were pottering around their small villas with watering cans, gossiping with their neighbours in that surreal mixture of French and Arabic Tunisians have developed to deal with the labyrinthine complexities of their heritage: Carthaginian, Roman, Phoenician, Arab, French. No doubt former civil servants or government officials, these men had been pensioned off, and were descending into a valedictory slumber as delicious as a glass of sweet tea with pine nuts floating in it.
Just six years have elapsed since the "Arab Spring" was launched here and a world of change has unfolded. Tunisia is no longer a totalitarian State. But, like the twists and turns of the crumbling Crazy Golf course that leads down to the Sheraton's bullet proof Guard House - all part of that most exclusive and reclusive international hotel's curious idea of grandeur - the transition is proving far from straightforward.
Public health, and public healthcare, are pillars of the resilience of any country, whether in transition or not, and when my company Patient Powered Medicine was asked on behalf of the British Embassy in Tunis to contribute to a change management course for Tunisian medics we leapt at the chance despite advice to the contrary. The 'plane clearly felt the same (only TunisAir flies to Tunis from London) its left engine complaining loudly on the ascent out of Heathrow and for most of the three hour flight.
Tunisia's two recent Islamist massacres - one on a beach in the southern resort of Sousse and the latest at Tunis' Bardo museum - have done one thing other than cause untold misery and loss. They have once again demonstrated that Tunisia's ordinary people will not have their country taken back to any version whatsoever of the Bad Old Days. "We Could Fly So High, Let Our Spirits Never Die" was the endearingly blue-sky slogan on the banner carried by students protesting these atrocities. "Not In Our Name".
My own first experiences backed this up. Imed, a waiter in the Sheraton's cornucopia of a self-service restaurant, married to a British Pakistani, glued himself to me like a modern day Jeeves, and would not let me do anything at all without imparting lashings of local wisdom. My first attempt to send laundry for cleaning was accepted by the duty porter, who immediately invited me to accompany him to the underground laundry, where he introduced me to The Man Who Loads The Washing Machines, The Man Who Loads The Drying Machines, and The Man Who Does The Ironing. Not forgetting The Man Who Does The Folding. The staff at "Harry's Bar", spotting a visitor who enjoys his bevvies, shepherded me carefully along a shelf of oddly-named and even more oddly priced spirits. In a country where there is still a popular brand of bathtub gin called Old Lady, this was reassuring.
I was badly in need of refreshment after a day spent cajoling some of Tunisia's grandest medics with a charming local interpreter glued to my shoulder like a parrot. No cake walk, this, especially when negotiating the minefields inherent in any comparison of their system with ours.
I was there when Tony Blair threw all the money he could print at the NHS, and results were understandably pretty spectacular. But how can you even talk about that story in a country where every pip is constantly squeaking, without flinging the peel in their faces?
I left with some beautifully folded laundry and an indefatigable sense of the potential of ordinary, loyal, hard working, committed-to-change Tunisian people. If only Tunisia could find a way to do what we in the UK were able to do for a whole, precious, transformational decade. Management structures. Management training. Putting the people in charge.
That's the way to iron out the crazy golf.
Good Morning. My name is Kate and it is a great privilege to be here today to speak about my experience of cancer and its image.
If you had told me two and a half years ago, I would be here this morning, I wouldn’t have believed you.
Because, in July 2014 I was taken by ambulance, to A&E and then stayed in hospital for three weeks. On the first night, I was too fragile to be moved to Intensive Care and, they almost lost me. Two days later I was diagnosed with Stage Four B Hodgkin Lymphoma. And I have been living with cancer ever since.
I’d been unwell for some time but, busy teaching six days a week at a boarding school, I ignored it. The initial signs, tiredness and weight loss, I attributed to stress and overwork.
Later symptoms such as night sweats and extreme itchiness, I did not give myself the time to question.
By the time, I could feel lumps in my neck, armpits and groin, I was petrified and in denial. Even if I had seen a doctor I would not have found the words to describe what was happening to me. I worried about upsetting my friends and family and how I would be perceived with cancer.
I have had five courses of chemotherapy, four batches of radiotherapy and, courtesy of my amazing donor brother, one allogenic stem cell transplant to get me to where I am today; well enough to attend this conference.
My immune system and blood cells are now a copy of my brother’s. My blood type has changed to his, my blood cells have Y as well as X chromosomes, so if either of us left blood at the scene of a crime, we could both get blamed!
The last two and a half years have been quite a journey. Today we have this incredible opportunity to gather, discuss the state of cancer in 2016, and inspire plans for change. There are three things that I’d like to talk about – specifically on the image of cancer.
Why am I talking about the image of cancer? And particularly to an audience like you; with amazingly expert knowledge. Surely the most crucial thing is to develop more effective treatments? Medical advances are vital and I look forward to some of today’s speakers providing insight into the latest developments. But, as we all know, a diagnosis of cancer means much more than a discovery of uncontrollably dividing cells. Cancer has affected every aspect of my life and its image has been central to how I, and importantly others around me, have understood cancer. Much of my journey would have been easier if cancer was perceived differently and I would therefore like to encourage a discussion about how we can improve its image in the future.
The status quo: the image of cancer in 2016
I’m firstly going to explore two popular images of cancer. These are stereotypical not universal images but they help to highlight some issues with the popular understanding of cancer.
The first image: And this I will call the ‘survivor’.
The second image: And this I will call the ‘sufferer’.
For some, one of these images is the reality but for many, including me, it is not. In an era where 1 and 2 will develop cancer, there is no longer a simple cancer dichotomy; it is not just kill or cure.
Turning to those images.
Firstly, the ‘survivor’. Their experience is often summed up as; a lump, an operation, radiotherapy, chemotherapy, the all clear, remission, survivor. The language around this framework is all about fighting. A recent campaign that subscribed to this idea called for a ‘revolution’ or a ‘rebellion’ against cancer. It is something to be ‘beaten’ and ‘overcome’. For a time, I identified with this image. I was apoplectic with rage about my diagnosis, I wanted to scream at the sea and crush cancer but, after a time, I realised this attitude would only get me so far. I see three main problems with the idea of ‘destroying’ cancer:
Secondly the sufferer.
Their experience of cancer is often summed up as: a lump, more lumps, inoperable, a terminal diagnosis, chemotherapy, palliative care, death.
This image is all about tragedy. It would be misleading to suggest that cancer is not, at times, tragic. But thankfully tragedy is becoming less common. More than half the people receiving a cancer diagnosis will now live ten years or more.
Even if the sufferer does not ‘succumb’ to cancer, this image encourages pity. In a recent radio broadcast, a person being treated for cancer remarked ‘Cancer takes your dignity away’. This sufferer was being portrayed as a victim.
I want to challenge this image too because:
The future: how should cancer be perceived?
1. Cancer can be, and is increasingly becoming, a chronic condition:
There are many, including me, who are living well with cancer. Those who are no longer in treatment are also living chronically with cancer. For example, those in remission cannot help but worry about previously dismissed aches and pains. Whether someone who has been affected by cancer is still in active treatment is in many ways an arbitrary point. A person living after an ‘all clear’, is still dealing with cancer. The real distinction in experience comes between those who have had a cancer diagnosis and those who haven’t yet. What if we stopped just celebrating ‘survivors’ and instead everybody who has been affected by cancer?
2. Cancer is as much a mental as a physical condition – which treatment should reflect
The hardest challenges I am facing are currently mental.
Macmillan have provided counselling to help me adapt my life, and the lives of those around me, to make permanent room for cancer.
At a time of stretched NHS mental health services, I’m extremely grateful for the counselling which was provided within weeks of my referral.
Even for those who are no longer in physical treatment, the mental effects are ongoing. When the routine of regular hospital appointments disappears, the loneliness can start to creep in.
Imagine a world where it was publicly understood that the mental side of cancer needs to be treated as seriously as the physical side. It would transform the lives of everyone affected by cancer.
3.It is possible to live well with cancer
I have, as much as possible, lived well throughout my cancer journey.
I walk, run, sail, ski, read, paint and I have kept a blog about my experiences.
I volunteer for the National Trust and for my local school. I haven’t yet returned to work but I am hoping to do so soon.
Our working world is not always very accommodating for people with cancer as the unpredictability does not fit well into the workplace. If we truly began to accept cancer as a chronic condition, in the way that diabetes or HIV are, it would be even more possible to live well with cancer.
4.Call cancer ‘cancer’
We find so many ways to avoid calling cancer ‘cancer’. We call it ‘the big c’, euphemistically say ‘she’s not been well’.
But as soon as it is called anything apart from cancer it suggests that there is something to hide. Making assumptions about cancer is difficult; people say ‘you must feel so poorly’. ‘you must be suffering’.
Everybody’s cancer is complex and unique. Call cancer ‘cancer’ and if you want to know how somebody with cancer is feeling, then ask.
We should talk even more openly about cancer and those affected should never feel like they have anything to hide.
I have never, since my diagnosis, felt ashamed of my cancer. I lost my hair, twice, and I proudly wore my bald head, always with earrings, and sometimes, courtesy of an artistic friend, with decoration on top.
Sharing the new image: we should be increasing cancer education
As much as people know that cancer treatment may involve chemotherapy, and or radiotherapy, and or an operation, so few people know what this means.
Walking into my chemo ward for the first time I expected to see cancer patients, ill people, people who were not like me. I was delighted to realise that the others in the ward were just people.
I wrote a blog piece on chemotherapy which was well received; people want cancer demystified.
We have had ‘24hrs in A&E’, ‘One born every minute’, ‘Inside the Portland Hospital’ why have we not had ‘A day in the life of the Royal Marsden’?
Fantastic people within the NHS and Macmillan have helped me to look at cancer in a different way. Messages about cancer should radiate out of hospitals and Macmillan centres. If people knew more about cancer and the reality of treatment, fear and stigma would decrease.
In conclusion, I hope we can all agree that the two conventional images of cancer; survivor and sufferer, are insufficient to understand cancer in 2016.
While my speech has been all about images and labels, I have not suggested a new label for those affected by cancer in the future. This is because I don’t think one label is enough – we instead need an infinite number of labels. We should all be creating our own images of cancer.
I have been surprised to find that I no longer want an identity without cancer but, equally, I do not want it to be my entire identity.
I’m not a survivor, I’m not a sufferer. I’m a tall, cat loving, skiing addicted, history teacher from Emsworth.
I am Kate and I am living with cancer.
Robert Francis QC lambasted an NHS culture that "measured care out of existence". But data doesn't have to be reductive. To be truly human is to know what you believe, and to put your beliefs into action.
In Mid Staffordshire inconvenient people and facts were systematically massaged out of the way so that a pre-written story of organisational success - designed in this case to win for the Trust coveted 'foundation' status - could be trumpeted. This was a management culture big on value and short on values, a culture that "measured care out of existence."
A nurse interviewed anonymously on Radio 4's Today programme on the morning the Francis Report was published told how a national regulator had sent inspectors into one of the Mid Staffs hospitals and the nurses told them 14 audits were taking their eyes off the basics of patient care. The inspectors said: "Oh dear, we'd better have an audit about that". Professions of all kinds have encouraged - either explicitly or implicitly - a culture of collective emotional detachment, a merging of the individual into the collective, and justified this via a doctrine of self-preservation.
But medicine is different. And it started with Hippocrates of Kos, the first doctor to promote a culture that put values into action.
The honourable foundations of the NHS were also all about values-into-action, and were backed by important currents in post-War philosophy. Oxford's Gilbert Ryle invented "behaviourism", the idea that the right values lead to the right actions. Classical renaissance philosopher René Descartes had argued that mind and body were radically different, and questioned how one could directly influence the other, but Ryle dismissed this as the "myth of the ghost in the machine", and argued that beliefs were the mother and father of their corresponding actions.
Behaviourism lives on, thank heavens. As recently as December 2012 a nursing document Compassion in Practice proposed a Rylean view of mind and matter in dynamic relation, with the regular use of a "cultural barometer" to test whether values are really understood, owned and put into practice. Then, in April 2012, the NHS announced a £1m fund aimed at "creating wholly patient-focused organisations".
I responded to this at the time by proposing a series of pan-organisational interventions based on storytelling, where an agreed theme - such a caring for patients with learning disabilities - was explored from the perspective of both individual patients and individual staff. Stories could then be compared and analysed using a method developed in the 1960s by two US sociologists called Glaser and Strauss, overcoming language differences and identifying shared themes. Hundreds of ideas were voted on, and this one came top in the country.
In response to findings from the work, one of the hospital trusts introduced a training course for nurses and a volunteering scheme to help local disabled people get more involved in the hospital, building new networks of peer support. There was a 60 per cent reduction in complaints, and an eight-fold increase in formal compliments received by staff, accompanied by an Olympic leap in performance in the Net Promoter Score of the then new Friends and Family Test.
When the NHS was founded, it was undoubtedly a little easier to line people up behind a single set of beliefs. Most people wore the same clothes, listened to the same wireless programmes. In today's super-connected world people pick and choose their identities in ways our ancestors could only dream of. The modernity paradox is that no system can arrive at consistent values and standards without engaging the people who use and deliver its services as individuals. Data that links values with action doesn't have to be reductive, in fact by sharing it in the right way you can cause it to drive the very actions to which the values aspire.
Next time a thousand people die who should not have done; next time people's loved ones are physically or mentally abused, or left in their own urine, which individual will say 'stop'? Just like medicine itself, it has to start with someone.
1. Include the voices of clinicians.
For far too long patient experience has been hived off to managers, who then tell clinicians “how to do it”. This is infuriating for people who’ve had to study for twenty years and pawn their Elton John collections to get where they are. When you start listening to the voices and stories of clinicians - at all levels - and using them to improve everyone's experience of being in the workplace, you won’t believe the enthusiasm and knowledge they bring. And if you keep on being this stressed you might need them one day.
2. Avoid the Data Jitters
Waking up with the data shakes? Take this one with a glass of water. Big data can be intimidating, especially if you’re not the kind of person who opens a spreadsheet as if they’re cutting into a birthday cake. Such people exist. Hire one. And don’t forget their birthday.
3. Don’t "Survey-Worship"
Don’t wait until The Survey Says patient information is poor, then run off and drop 300,000 leaflets on your strategies for the avoidance of bed sores from your brother-in-law’s single-engined aircraft. You'll crash. Don’t wait until The Survey Says Receptionists could be nicer, then go round and tell them they’re being replaced with Siri and a cardboard cut-out of Gary Lineker. You owe your staff and communities more than that. And the Receptionists will kill you, smiling all the time as they do it.
4. Use Stories
Stories are the product of open, rather than closed, questions, and so they reach the parts other data sources don’t, and can’t. Trust me. Collect and analyse stories in the right way, and it’s like waking up from cryogenic suspension. You’ll understand the people who matter most to your organisation better than you ever thought possible. And then you can name your next salary. And people will bring you bunches of fresh chrysanthemums. And chocolate.
5. Avoid “Five Things” lists
Most of them are rubbish. Become a cookie monster instead.
NHS Trusts are run by Boards composed of Directors, Executive and Non-Executive. In foundation trusts, Non-Execs are appointed by governors, a role transplanted from education. As in education, NHS governors can be either appointed or elected. They can be drawn from the communities who use the service, or from the staff body.
These structures and roles have grand-sounding titles, and many control hundreds of millions of pounds worth of public services. But in a world of unprecedented financial pressures, has the clout been taken out of them?
All too often, pressure to react to resource crisis after resource crisis means that however well-intentioned the people around the table are, there just isn’t time to amass the rich evidence required to look at systems and processes intelligently.
If only some cool-headed time could be found, along with the cool-headed evidence needed to fuel the kind of root and branch discussions that can make systems connect better with the people who use them, millions of pounds of taxpayers’ money could be saved.
As a former BBC employee, who worked as an NHS non-executive director and was an independent convener for complaints, told me, “A lot of talk about quality in the NHS is actually about quantity. The orchestrated reporting of data can begin to ring hollow for NHS boards. There needs to be a way of rooting these discussions.”
A former Patient Experience lead added, “Very often the way the NHS organisation operates is designed for a world that vanished thirty years ago. We’re stuck in a loop. It’s like a computer running old, slow software. We don’t just need to find the keyboard shortcuts. We need to re-program.”
“Facts” as traditionally understood, the formal ones that pepper the paperwork ascending through the system, are part of the old software. New information is required. As a distinguished former NHS Chair revealed to me that he gets “very little assurance from the paperwork that flows upwards”.
So, if some cool-headed time could be found, what kinds of data could inspire the right kind of safe, honest, intelligent conversations, engaging hearts and minds at the same time in way likely to deliver real, money-saving change?
But what kinds of new information?
NHS leaders know in their bones that the information they need is the stuff that bridges “system” and “non-system”. It is information about the way the system they operate connects – or fails to connect – with the day to day lives of the people who use it. And that means "rich data", "crossover data", data that shows how things connect, as well as how they function.
According to the Cabinet Office, billions of pounds a year are wasted as a direct result of ‘disconnect’: millions on drugs that are wasted because people don’t understand what are or how to take them; many more millions on the results of that in terms of avoidable readmissions to hospital, and the resulting stays; and even more millions on people not being able to attend their appointments because the nuts and bolts of their lives mean they can’t.
What would you do if you were suffering from mild depression, had financial anxiety, were expected at Outpatients, and the bus service was unreliable? And who should the conversations be happening with about that? Not the hospital, surely, but the bus company, the CCG, the local Third Sector.
“Storytelling is a powerful way of doing this,” adds my ex-BBC friend. “Complaints, for example, are stories, and community narratives can do that very effectively, but it needs to be done systematically and not just on a whim or in pockets.”
So, stories, including complaints, can, and should, be used in board business; but they need to be woven into the fabric, rather than just sitting, however compellingly, on the surface.
“It’s the opposite of touchy-feely; it’s the ‘how do we know?’ question that every board member should have in their mind and on their lips. The data should challenge the stories; the stories should also challenge the data,” he explains.
In the case of another non-executive, who influenced the improvement of a vital local wheelchair service, the trick was just this: finding the data behind the stories and the stories behind the data. “Data can be true; stories are more than true. They bring a problem to life. ”.
A former lead governor at University College London Hospitals Foundation Trust took a similarly systematic approach there, setting up and chairing a high-quality patient care group for the governors. “The majority of governors have a democratic mandate, but they also need to know what’s happening on the ground. ”
Hearts and Minds
So non-executives and governors need an organisation culture where the heart can be engaged along with the head. “You have to mind when things are wrong; it has to make you angry”, says the ex-BBC non-executive, recalling an “inspired” away day for both non-executive and executive directors where they were walked through the human implications of their decisions.
These are the signals to follow: non-executives and governors armed with the tools they need, where necessary, to “break the spell of the organisation” as another eminent former governor, put it.
Christine Hancock, a leading commentator on global health, who has been a health authority chief executive as well as general secretary of the Royal College of Nursing, told me: “Whatever systems you put in place those systems need a conscience. That might sound a bit flaky to some ears; but you have to ask ‘what makes really busy people stop in their tracks and act swiftly on something that doesn’t fit the accepted picture?’”
Governance needs to be understood experientially as well as structurally. Where both sides are in balance, and with the right rich data, analysed and presented in a way that will drive safe, honest discussion at decision-maker level, the engine of accountability can really sing.
It’s the difference between patients and communities shouting from the sidelines, and all of us pulling together: from patient power to patient powered.
Monday. In Old English it was the Day of the Moon, lunatic fringe peeking from under the week's hat.
Blue it is, this Moon-day, china blue, fragile, breakable day, day for keeping again in the air all those china blue plates.
Or a harvest moon perhaps? Day for gathering the fruits of our labours into barns. "Harvest moon, harvest moon", (Ted Hughes this time), "booming softly through heaven like a bassoon./And earth replies all night/Like a still drum."
Or a moon that shines its love-light, pointing to places where new life will begin, with a kiss. The moon is a spoon, according to Bob Dylan. "That big, fat moon is gonna shine like a spoon/But we’re gonna let it/You won’t regret it/Kick your shoes off, do not fear."
The Great Wall of China is the only man-made thing that can be seen from it. "It's a great wall", according to Ronald Reagan, wittiest President ever.
Monday. Day of beginnings.
"In my beginning is my end", wrote T.S.Eliot. "Houses rise and fall, crumble, are extended,/Are removed, destroyed, restored, or in their place/Is an open field, or a factory, or a by-pass./Old stone to new building, old timber to new fires,/Old fires to ashes, and ashes to the earth."
When he arrived on the moon Buzz Aldrin smelt moondust for the first time, and it smelt of ash, like gunpowder.
Monday. Day of new smells, day of fireworks, day of explosive, soaring possibilities.
Numbers in their birthday suits were a scary thing for Mr Sutter, my Maths Master at school. Mr Sutter could not bear the mention of a number without its being assigned to an object. Being of a ruddy, rural disposition - fond of fresh air and the frying pan - his complaints would usually take the form of “Twenty-three WHAT, McDowell? Twenty-three cows? Twenty-three sheep? Twenty-three pigs?” He would shuffle about, his beer belly wagging from side to side. We watched eagerly for the moment when a button would fly off and hit the class swot in the eye.
Greek philosopher-mathematician Pythagoras had a more wet-eyed view of numbers, believing them to be God-like, their truth a free-floating thing, existing entirely independently from the imperfect, human world to which we were fond of attaching them. Pythagoras "proved" this using Geometry. In any possible world or universe a circle would still be a circle. And it would still be a circle regardless of whether there was anybody around to admire it (this idea was later developed by Idealist philosopher Bishop George Berkeley into the assertion that the figure of a tree in an Oxford quadrangle was an emanation from the mind of God first, and a set of electrical signals in the grey matter of the viewer second).
When Einstein met Indian priest-poet Rabindranath Tagore - Tagore was the first non-Westerner to win the Nobel Prize for Literature, and was W.B. Yeats's favourite poet - they were meant to have a debate about religion versus science.
What, they were to ask, was the difference between the sort of belief process we engage in in response to a scientific fact, and the sort of belief process we engage in in response to the compelling narratives and powerful group dynamics of religion?
But the resulting intellectual dance involved both thinkers encroaching delightfully on each other's sacred space. For Tagore - as a Hindu - religion was no more, and no less, than the human experience of the Divine. For Einstein, scientific fact was always weightier than any possible human experience, and so Einstein was nervous about placing such apparent limitations on it.
"We humans", says Einstein, "attribute to truth a superhuman objectivity. It is indispensable for us—this reality which is independent of our existence and our experience and our mind--though we cannot say what it means." (about as handy a definition of the popular God of Western culture as it is possible to imagine).
Tagore's reply to this is like a wrecking ball: "If there be any truth absolutely unrelated to humanity, then for us it is absolutely non-existing." "Then [replies Einstein], I am more religious [he means in the Western rather than the Hindu sense] than you are!"
We would do well to ponder this. When BBC Radio 4's File on Four examined foreign aid impact assessments, some of the senior Civil Servants interviewed were so microphone-shy their voices had to be scrambled. The resulting honesty made for an entertaining thirty-five minutes. The apparatchiks talked about how numbers could be used to "kill" an embarrassing issue by "striking people dumb". Numbers can certainly be a cudgel in our culture, heavier even than facts.
When public servants use numbers to reach a decision in work - a decision which may have an impact on the lives of thousands of people - the real truth of the matter is not so much what the numbers have proved, as what those numbers may make us, as a society, do in the world.
If numbers are indeed the gods that drive decision-making in public service, they should not be experienced as untouchable, remote, fear-inducing, striking people silent; but as gods in the Hindu sense, defined by their relationship with us, with the humans whose lives may be altered by them forever, by the impact they will have in the world.