It’s Not All About You – why we need new stories about healthcare

Our stories about healthcare sustain the status quo.

We like our stories. Neat beginning, a little bit of mess in the middle and a coming through to a tidy end.

We like them now in healthcare. The pathway, the journey… those gentle phrases suggestive of our story being akin to a stroll through a meadow, rather than traversing Hanger Lane Gyratory System.

Narratives are common place in medicine. Story-telling has become part of the improvement methodologist’s toolkit. Stories have become ‘embedded’ in healthcare practice, some might say (and I would like to suggest) ‘co-opted’ by institutional forces.

It’s the way we tell ‘em…

Those who plan and design healthcare ‘pathways’ assemble in rooms to try to focus on ‘what matters’. Those in the room become both the tellers of the story and the protagonists. They craft a story that is inevitably and unintentionally, largely about themselves.

The centre of the story becomes the institutional citadel. It is a narrative about punctuated periods of crisis when outsiders (patients) get visibly ill and come seeking succour and ‘professional’ help. It is a tale of access to the technology of wonderment and diagnosis and the wizardry of healers at dramatic moments. Hospitals, GP surgeries, pills and potions, powerful sorcery.

If patients or carers are allowed into the secret room where stories are told and written, they can and often do, shift the tale. They will articulate those moments of sheer terror, the consequences of illness on identity, the wobbly quest for certainty, and hopelessness when met with deeper questions and prolongation of angst, the fear of power, long waits in the valleys of unreason, travails that only momentarily meet the therapeutic masters.

The locations of darkness lie outside the city walls.

Our ordinary story

My story began at school, continued at college and work. The characters are mostly friends who could not cope, mum and dad baffled by the fall from grace, brothers reduced from gods to bit parts, colleagues who laughed at, or cried with me. And many who simply disappeared.

It was about early fears that were not requited. Forgiveness not granted. Gentleness towards myself and others unable to be given. Long days and nights. My brain an enemy. My stomach and heart cut off. Like so many others. This story is not unusual. It happened in bedrooms, kitchens, playgrounds, swimming pools, shopping centres, gardens, and many many winding streets (literally and metaphorically).

And when it all became too much. When my suffering erupted and was noticed by societal guardians, I walked into the gates of hell. The psychiatric system.

And within the citadels themselves, it wasn’t always the doctors or nurses that I recall – it was the porters, the cleaners, the receptionists… who touched me.

It wasn’t so much the psych unit that helped heal me. It was the hospital canteen. It was the local Chinese takeaway. The park. Those places where I began to re-learn liberation and autonomy. Even the church I strolled into once where I met someone who became my dearest friend. The tale of coming again to belong. The stories took place elsewhere. Often far away from the ward and GP surgery.

Yes, yes, yes… And

Yes, the clinicians needed (and need) to be able to listen, to communicate, to explain, to advise, to support.

But let us not continue to collude in the wrong story. They have their walk on parts at significant moments of emotional drama – that is why they are remembered. Because our brains are wired to respond emotionally and rekindle those moments of emotion when re-telling stories. We are Dorothy. The story lies on the yellow brick road mostly.

And yes, relationships with clinicians and staff are critical. And yes, all professionals need to learn the art of walking alongside us. But it’s not all about them. In fact, it’s often not about them at all.

However, when I tell my story in healthcare circles, all most people want to hear is about the contact and relationships I have with doctors or clinicians. Or about my ‘experience’ in a healthcare setting. And often that is the bit of the story I tell. Why?

Partly, I suggest, is that it is uncomfortable to realise that those who usually gather in improvement circles do not have the power and influence to change things as they might. They talk about ‘what matters’. But if ‘what matters’ is my contact with friends, then they may be unable to divert resources towards those avenues, even if they want to.

Maybe it’s about fear? About their own vulnerability? About their loss of authority? About them being reduced to signposts to healing sources, rather than fonts of wisdom and knowledge.

Blimey – if I had been trained long long hours to think I was part of an elite, suffered through years of being treated badly as a junior doc, pumped full of amazing arcane knowledge, got to wear the white robe, then I would want to feel I could heal and really make that crucial difference. And in many cases, they do…. But it’s only part of the story.

Are people afraid that if I tell a deeper, wider, bigger story, that the importance of doctors, hospitals and drugs will be demeaned? That the natural corollary of my story is to pump resources into schools, parks, local spiritual enclaves, helping friends who can listen better, helping my poor mum and dad to cope? Who might be the losers?

The stories we tell about ourselves give us meaning. And sustain us. Or can betray us – I have learned recently that my story about my healing from mental health problems has been wrong all along. I did not ‘recover’. I learned to adjust for a while before succumbing again. I need to learn to ‘live with’. That is hard to tell myself and hear. My new story means I have lost certainty and am vulnerable to further periods of unwellness, god forbid. I have lost something in the art of re-telling. And/or maybe I am still within a story that is perhaps never-ending.

Telling the wrong story?

When it comes to healthcare, perhaps we are all telling the wrong story. Perhaps we are all prone to telling and recasting the story from the wrong end of the lens. If we continue to do so, not only will we continue to uphold doctors, pills and hospitals as the overly-powerful actors that they are. But we also risk maintaining a story of healthcare that is not fit for purpose in a cash-strapped age – that reduces patients to the bit parts rather than the main protagonists.

If we want patients ‘at the centre’ then we need to retell our stories about health and healthcare. There is a risk that story-telling – the meta-story of healthcare – is being co-opted by those who sustain power? Or maybe I am telling it wrong?

What’s your story?

(c) David Gilbert, 2017

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