Stories that need telling

I bought "The Other Side" by Kate Granger (http://theothersidestory.co.uk/)  last week and read it in two gulps. It is a compelling read and it made me reflect on why I found it so gripping.  I think it is such a visceral and honest account of the patient experience that it is like you are there beside Kate. I felt moved to tears on quite a few occasions and also shouted to myself about the issues that resonated in other areas of health care. Cancer is the hook – life limiting and perilous – the treatment debilitating and the trajectory so uncertain. Knowing the ending and Kate’s current dilemma made it even more of an emotional roller coaster. My main thought was whether other life limiting illnesses create equally compelling narratives and whether the public and health care professionals would be as interested in an account of diabetes clinic visits, trips to neurology for a differential diagnosis of vague and diffuse symptoms. I am so grateful (if that sounds patronising then it is not meant to be) for Kate Granger for being so clear minded that she wrote her story during sleepless nights and had the courage to put it out in the public domain. I have been interested in the stories behind people’s experiences of disease and its treatment for over 20 years. That's quite a scary statement - as I realised the other day that it is 20 years since I started my MSc in Health Research - the beginning of my research interests and my resulting love/hate relationship with all things scholarly...

My career as a diabetes specialist nurse (DSN) didn’t last very long but it was, I hope, person-centred. I didn’t last as a DSN because I got frustrated by the profession centred approach and the focus on clinical measurements and the organisation of the clinic rather than a focus on what mattered for the person with diabetes. I used to get very irritated with the powerful decision makers in diabetes care. I started my PhD research in response to my disquiet about what was going on and wanted to find out what people talked about when they were given an opportunity to “tell their story”. Each interview started  like a stopper had been taken off a bottle of fizzy drink – they gushed forth with the beginning of their life with diabetes(diagnosis), the trials and tribulations ( follow up clinics and annual reviews) and then the current experience. I didn’t have to ask much or prompt– the stories just kept on coming – back in 1999 after I had these stories as my data I couldn’t find a way of keeping the experiences whole.

Narrative research in nursing was very new and even service user views were still quite novel and no one seemed able to help me find a way of presenting my findings in a way that  honoured the diversity and complexity of each person’s life with diabetes and their encounters with health care professionals. The frustration of hospital parking, the irritation of inconsistent staffing at clinics, the anxiety of retinal screening, the ongoing exasperation of a total oversight of the emotional and psychological aspects of managing a life changing, demanding and intrusive condition. All the people I interviewed thanked me for letting them tell their story – a fact that still makes me feel guilty that I didn’t get my PhD. Maybe this blog can help with that as more people will read this than would have read any thesis I might have produced.

I guess my thoughts are that many people experiencing ongoing and demanding health care deserve to have their stories heard and that is one of my areas of learning since I joined Twitter. I follow quite a few people with diabetes (mostly type 1) and a lot of what I read makes me very cross as it seems like a lot of what I learned during my research by listening to people with diabetes has yet to filter into diabetes care in any obvious way.

It happens a lot in my writing workshops – patients and practitioners have a different conversation – not disease or symptom focussed but person and life focussed… this has to be the better way of informing care needs. How can we make that happen??

Below is one of the poems I wrote in response to the stories people told me – this was the beginning of my need to write poetry. There are a quite few of these I might put them here for you to read..

 

Beginnings

Rapid onset

Gradual change

Everyone is different
No two are the same

Playing in the woods

Sitting in the car

Unexpected symptoms

A slight change in the view

Going in for something else

Didn’t know I had it

Had an itch that wouldn’t go away

Doctor said it was my age

didn't know that was part of the deal!

Thought I was thirsty, peeing a lot

Thought it was my age

Didn't bargain for this!