Saturday, November 16, 2013

Stories that need telling

I bought "The Other Side" by Kate Granger (  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..



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!



Sunday, November 10, 2013

Friday, November 8, 2013

My Shadow Side - the courage to share

Last week I had the privilege to be part of a retreat around courage, compassion and choice at the Global Retreat Centre, Oxford (more details here) . I was invited to attend by Andy Bradley founder of  Frameworks4change via twitter.

I have been thinking a lot about my learning from the Retreat last week. I found it difficult and returned home feeling uncomfortable about my experience. It wasn’t what I had expected and I guess as a somewhat impatient and restless soul I thought it would be a call to action. I have been looking for that rallying call to be in my vicinity and give me the chance to step forward and answer the call. I have been looking for my heroic leader, the one I can follow and to whom I can align my mission. Looking back this has been a recurrent theme throughout my career and has been dogged by disappointment and disillusionment; people who I have looked up to have not been up to it and have failed to see my potential. I have been over looked and ignored. As a consequence of this I have been quite cross for a very long time. Upset and hurt I have been festering away with resentment.
I took this to Oxford last week and hoped to find that hero within the participants. I realised I was a bit desperate to find people who I could follow (be asked to join their mission) but that wasn’t the focus. The retreat was about stillness and listening. I did a very good job in resisting any learning at the retreat. I wanted to run away the first morning and I felt somewhat disturbed by the proximity of the Retreat to my childhood town, Reading. We were even on the bloody bus route that my dad often uses when he goes on one of his jaunts. I felt quite distracted by this to begin with but sat with the emotions and recognised that the loss of my Mum 7 years ago is still unfinished business and maybe I ought to be a little gentler on myself.

Once I leaned into the stillness and began listening I started to feel calmer and less anguished, I stopped being miffed that there would not be any rallying calls and that action would come later. I also started paying more attention to what I was hearing about myself and taking on board  what wonderful folk were telling me about the skills I might have to offer.

I am still processing a lot of the learning and still inpatient to get on with using listening and support in practice. I want practitioners in healthcare to know that some of us are looking out for them, I continue to be frustrated about the distance HE has from practice but I also have started to spend less time in my head, reduce the drain of thinking. I have started to believe in role modelling compassion and thoughtfulness.
 I still get grumpy and I can still see that my default setting is melancholy and anger but I am also enjoying the times when I am feeling brighter and also hearing the positive in my interactions with other people.
Twitter is a wonderful place for learning and sharing and over the last few days I have a number of conversations that have helped begin to provide a solid foundation for my thoughts and ideas.

Thanks to a session facilitated by Francis Briers I have come to know about U theory ( more details here) and have also begun to see my own blind spots. I have always been fixated about writing things up and getting them published. This has often culminated in nothing, nada, depression and low confidence. I have often bleated on about how much better I am verbally, how I can express myself well and also that I really quite like an audience!! Well how about doing some clips about some of ideas, thoughts and projects? Thanks Andy for the suggestion I will explore this and as my daughter is skilled in the use of information technology I will make sure it will happen. Seems a bit scary because it might be ridiculed and mocked but that is a risk I am happy to take to see if I can share my thoughts around supporting practitioners and the role of values and beliefs in their practice.

When I stop thinking too much and I allow myself to calm I find the poems come..

Switching The Mind

It is in the stillness
that we can listen.

It is only in this time
can we really hear.

Nurture stillness, silence,
connection, clarity.


It is only by stopping
can we start again.

Hope, courage, growth
peace, resistance.
It is only by persistence
can we share the way forward

Together stronger –  joy.