Conundrums (the ups and downs of diabetes)


Woman aloneHave been working on my diabetes control this week – hard, harder than usual and it got me thinking about choices, dilemmas and conundrums.

If I eat in the evening at 6 or before, I get better control at night – but no one wants to go out for dinner at 5

If I eat healthily I am better controlled – but no one likes to be watched eating pudding alone

If I walk too far my feet burn – but everyone thinks I’m putting it on

I love latte coffee but it’s less good for me – Americano sucks

Being tightly controlled means more hypoglycaemic episodes – means I put on weight

When people are kind to me about having diabetes, I’m horrible and I hate it – what’s wrong with me?? I think I just want to be like everyone else

Diabetes BG testingI can’t be bothered to hide my insulin pump any more (getting too old to be bothered) – but then people stare

If I get on with my life and forget about Diabetes – it always comes back and bites me on the bum

My lovely son had a coarctation of the aorta when he was a baby and had to have surgery – I will never know if it was my fault = #guilt

My biggest fear is losing my sight, not being able to read my beloved books – but I take solace in knowing I would be able to listen to Radio 4 and the Archers

Diet coke is officially the most boring soft drink in the world – but often the only one served in bars (and then you are advised to check as they often give you full fat!)

I couldn’t join the Queen Alexandra’s Royal Army Nursing Corps because of my diabetes – but it didn’t matter in the end

Having a bad hypo during the day is awful but at night is even worse – thank god my pump has made this better

There is no such thing as a day off – but having a ‘kinder-to-self’ day is possible

I hate repeat prescriptions they are the bane of my life – second only to finger pricking

I am never going to run a marathon – but I never was a runner

When I’m going hypo my brain is working so hard to tell me to eat that I often overeat. It’s hard sticking to 15 grams of carbohydrate which is what is recommended

No one ever really celebrates a good day – as there are so many days to do!

I am very organised; planning is critical – but even then I forget stuff!

Diabetes isn’t static so you think you have worked it out then something changes – another ‘what the bloody hell’ moment!

But do you know Diabetes also contributes to who I am and some of who I am is not so bad.

Best friends at the seaside

Storytelling, tacit knowledge and a leadership Indaba


“If history were taught in the form of stories, it would never be forgotten.”

Rudyard Kipling

Stories matter; everyone seems to be taking on board storytelling – is it a fashion, a fad?

Storytelling bookHuman beings have been telling stories, transferring knowledge, values and history through hundreds of years and generations of tribes. Attention seems to be turning back to our delight in oral histories and stories. Even in electronic forms we see videos and read wonderful blogs that continue the ancient tradition of storytelling through generations, transferring some of our oral traditions to new digital media. It makes me glad – I enjoy stories and they make me laugh and sometimes cry – and I have learnt so much from these stories – they expand my mind.

My personal experiences tell me that stories are a powerful way for me to share my stories, find meaning and knowledge in what I know, that they have a power that charts and sterile traditional business words sometimes miss. My blog has become a place where I try to share stories and in doing so try to unearth some of my tacit knowledge that I wonder if has any value in the world. My stories and reflections are part of my endeavour to share and to move from ‘stuff that is in my head’ to sense making, making it social, transferring and transforming thoughts to a deeper understanding.

Tacit knowledge is deeply personal and hard to extract and measure. It flies in the face of much scientific study and is known to be hard to draw out and share. The spoken and written word, gestures and emotions are in my view part of its transfer and the recipient of it needs to be able to listen, watch and actively participate in the story to sense-make, participate and share.

It is also my view that it is a social activity for many, but perhaps not all; marrying together story tellers and listeners in networks creates a more fertile space for the development of concepts, ideas and taps into our imagination to assess possibilities and create new ‘castles in the air’. I understand that scientific enquiry is vital in our world but I believe that stories allow us to share and interpret experiences in a way that complements our more logical and scientific understanding.

This week I attended a Leadership Indaba.

Indaba is a South African word, with its origins meaning ‘gathering’ or ‘meeting’. More recently they are styled as conferences where there is space for creative thinking and where story telling is likely to have a strong role.

So this week a group of people with an interest in leadership gathered in Leeds as part of an Indaba organised by Centre for Innovation in Health Management in Leeds. The Indaba has an international flavour with colleagues from South Africa and the Netherlands – a great opportunity for story-telling across different cultures and experiences, a chance to collide our experiences and stories together in a way that creates new meaning informed by the people in the groups.

Everyone has a storySo, I went to the day thinking I knew nothing, I knew no theories, and that I may not be able to participate – that I might not be up to the task (Imposter syndrome at its most active). But Indabas are not styled that way…. Story-telling is what I think they are about. I came away bursting with stories and new ideas taken and processed alongside stories from others. It was a social activity, sharing stories, processing meaning and this was just the very first day we had met. I know not everyone was comfortable with the unstructured social nature of the day but I found it liberating. Telling stories links us to emotions that create new ways of thinking and behaving; maybe a creative way to find new and different solutions to complex problems?

So what happened at the Indaba? Storytelling started the process of weaving us together and started us on a new journey. For me it was, and remains, exciting; the chance to hear others talk about their experiences and to weave those stories through mine to create new understanding and meaning. Its early days, we are still building trust and confidence and we also need to work out how we share this learning more widely – I will blog more as our journey unfolds.

Finally, I think that there is a risk in having a single internal story. In this wonderful Tedtalk by Chimamanda Ngozi Adichie she explains about the danger of a single story. If you don’t think that storytelling and sharing is important watch the video – it may just change your mind.

I’ll show you mine, if you show me yours


Many years ago I learnt a very hard lesson. It’s about good intentions but still getting it wrong. We all like to think that our contribution to care is visible and valued by others but do we really take the time to understand the perspective of others who support patients and just as importantly what putting the patient at the centre really means?

NHS Direct

Three of these nurses worked at the site I did! It was a long time ago now!

My lesson is from the time when I worked at NHS Direct. It was a fantastic time we were breaking new boundaries and doing things across the country that hadn’t been done before. We were proud of our nursing assessment process. I was responsible for the technical system we used; not the algorithms, but the system functionality, that is how it works. We regularly referred callers to speak to or see the doctor in out of hours care. We were one of the first sites to integrate these services and we had a great relationship with the clinical leaders in that organisation. Providing seamless care was our aim across both organisations.

I was trying to develop a system whereby in our electronic referral to the doctor we included information about our assessment. The options were limited. We held a history of the full triage, all the questions asked and all the yes and no responses. Of course for a complex assessment this could be many many questions and as far as the nurses were concerned all of those questions were important, they all added weight to their referral. They were proud that they had done a comprehensive assessment, and wanted the doctors to see what they had done.

The doctors decided they didn’t want it- a stand off!

A difficult challenge to us at NHS Direct! I held firm. Surely they needed to understand why we had made the referral?

This went on for a while. We didn’t understand why they were so resistant, how could they refuse clinical information about someone we thought was ill enough for them to need to see them! Finally, in my wisdom, I decided I needed to find out more and persuaded one of the doctors to let me spend some time with them on a night shift. Arguably I should have done this earlier but, as you know, we all live and learn!

In the car in out of hours, in those days, the doctors were receiving referrals from the nurses directly and they only way they could view the referral was to print it off on a tiny portable printer. The doctor showed me what happened if he printed it off – ittoilet roll rolled out like an out of control Andrex* toilet roll….. Clearly not the communication that the nurses or I expected.

I learnt lots of things from this experience; a reminder of the need to listen, that we were not always the most important, that being proud can get in the way sometimes but most of all to stay focused on patients and their families. Fortunately I was able to put it right and improve what we did. We created a system where the nurses could create a short summary to transfer to the doctor; a better solution all round.

I think the lessons that I learnt then may be useful today too……

It is true to say that I really do feel that informatics is finally here to stay. Every meeting I attend everyone is talking about how important it is that everyone can see information about patients/citizens wherever they access services, that we need to reduce duplication and that this will contribute to a better patient experience. Sharing information is discussed as a fundamental enabler for service transformation. Excellent! I at least don’t have to have that debate any more.16571920_s

But then, I am rightly challenged on why do we have to ask for this now, why isn’t it here already? Surely if banking can do it we can? And so it goes on. I have worked with some of the most brilliant technical folk, they are so clever and awesome and I feel so lucky. They tell me that technically what we need, as an enabler for service transformation, can be delivered – so what’s stopping us besides money?

I am starting to wonder if the problem is similar to the one I faced at NHS Direct.

Everyone thinks that their part of any ‘record’ system is the most important, as did those nurses. There are many many conversations that loop round and round about standardisation of records, terms, datasets and about sharing agreements. But no one ever gives anything up. Equally the information governance debates centre on why not, rather than how can we, scaring the living daylights out of staff. And round we go. Although it’s never personal and it’s generally lovely people (most people in informatics are lovely :) )the conversations loop round and round like a merry go round. I think we circle focused on our records and our contribution to care, as we did back at NHS Direct, rather than looking at the whole system and from the patients viewpoint.

I’ve started to wonder if, like I did at NHS Direct, we are looking at it from the wrong perspective. I think what many clinicians mean when they say a patient centred record is ‘my view of a patient centred record’. What’s more, I think portals, the current trend, is merely each group agreeing to share ‘my patient centred record’. Better than not sharing at all but perhaps an ‘I’ll show you mine, if you show me yours’ approach that doesn’t really focus on the patient at all. I’m not so naive as to think that we don’t need some specialty systems – intensive care is intensive care – but I still think we might have got some of the principles wrong!Sharing It leaves me wondering if informatics needs to embrace co-production in its fullest sense; that is getting patients/citizens to describe what they mean by a patient centred record in collaboration with the people who provide care and services and those clever IT folk. Once we start this conversation then perhaps we need to accept that we have to find a way towards this goal in a way that puts aside our existing professional and organisational perspectives. It may be that it’s simpler than we think? Perhaps it throws away the concept of organisational records? Maybe that’s too hard but worth thinking about surely? If we muster all our brains and hearts along with patients perhaps we could co-create a new picture of the future?

Is informatics ready for such radical approaches? So why is it that we haven’t already embraced them? I’m not sure but I suspect it’s cultural and a difficult one to crack! Informatics is more about analytical approaches and logic and not quite so often about hearts and minds. The nearest I have seen is the development of hack days but these tend to retain control in the technical domain.

But as I learnt a long time ago listening and truly hearing are key to better solutions and I wait optimistically for the conversations to change.

*other toilet roll brands are available

Diabetes paraphernalia


IMG_3184This is an experiment inspired by the brave and lovely Charlotte (@bipolarblogger) but also to push myself to try new things.

Charlotte did a vlog to ‘show and tell’ all her medication for a week.  It was fascinating and helped me to understand.

So mine is a vlog to show you all the ‘stuff’ I use to manage my diabetes in a week. This is my personal list, everyone has their own approaches, favourites and tricks.  These are mine and mine alone.

Let me know what you think in the comments box :0)

PS I have learnt more than I needed/intended to know (ever) about video files, their size and how to compress them – #learningexperience

 

 

‘You don’t know what you’ve got till it’s gone’


Dr R waves a filament triumphantly at me; ‘Ah, he says, we are normal’!

My feetBut I know the truth, I may have passed the filament test and in Dr R’s eyes be ‘low risk’ but my feet are far from normal, in fact they feel odd. I just know there has been a change and it’s not a good feeling. They use a filament, a small, thin, soft piece of plastic, to test sensation on the feet of people who have diabetes. ‘Can you feel that?’ is their phrase. Over the last 5 years or so I have noticed a real difference in my feet. I can’t always feel sensations like I once could and they get sore and give me a terrible burning sensation if I walk a few miles – I suspect its neuropathic pain. It’s not so bad that I need to do anything in particular but I know it’s not as it was – I think I have early sensory neuropathy.

I’ve had type 1 diabetes for more than 30 years, to be precise 34 years and 9 months. I’m well and although not as fit as I would like to be I’m active and doing OK. The trouble is I also know it’s a bit like walking a tightrope; diabetes can just nudge you off balance at any time for no seemingly rational reason.

My feet 2012 in Italy

My feet 2012 in Italy

Feet are funny but massively important parts of you. I seem to have hypersensitive feet; it’s always been a thing that irritates me that I can’t wear the beautiful toe post sandals. I just can’t tolerate the bit between my toes. On the plus side I am not, and have never been, a smoker and I do look after my feet, they are treated to lovely foot cream at bedtime almost every day and I am very careful these days about being barefoot (although I still do it, I mean, after all you need to feel the sand between your toes).

A diabetic foot is what it’s called – not the toe post sandals part, that’s just me – but the risk that people with diabetes have, the risk of complications of ulcers that don’t heal and amputations. You are warned about the risks; your feet are precious and the risks are related to good control. However, beyond 50 years of having diabetes of the so called ‘medallists’ only 39% of people are free of problems with their feet – yep that’s right: 6 in 10 people had some symptoms of neuropathy according to the study by Sun et al (2011). (Great study by the way – if you are interested in what happens to people with diabetes over time but not for the faint hearted with diabetes). I think that’s a lot. At clinic they risk assess you against criteria a little bit like this.

But that’s all well and good.

I am 51 and not 101.

I want to wear fashionable and sexy shoes – that usually means heels.

There is not a healthcare professional in the land who thinks that is OK; I have been advised to wear ‘sensible’ shoes. I rebel and I refuse. My wardrobe is full of suitably unsuitable shoes……

flat pumpsBut this summer has proved different. It is with sadness that I report that I feel myself slipping into the comfortable shoes abyss – I even bought some wide shoes this week; it makes me sad.  Here they are my little (wide) black walking pumps.

I know that many people have issues with their feet and for many different reasons and I empathise. My compromise solution is to wear comfort for walking and heels for all else. So if you see me slipping on a pair of wide pumps you know why – I’m walking somewhere and trying to keep my fitbit steps up! The truth is I’m a middle aged woman with diabetes who is watching out for her feet. And for all doctors, podiatrists and nurses; please remember we are people who want to express ourselves through our footwear like many other people, give us a break for as long as we can hobble in the shoes!

I will be wearing suitably unsuitable sexy heels for as long as I can :)

My favourite suitably unsuitable shoes :)

My favourite suitably unsuitable shoes :)

The other thing is, numbers are about other people aren’t they? But the uncomfortable truth is that they are about you and me too.

Footnote: I wrote a blog for the lovely @whoseshoes about my mother in law and her shoes and you can read it here

The title of the blog is from the wonderful song by Joni Mitchell – thank you to Pete, @swelldiabetes for reminding me!

 

 

You never know!


conferenceI am sitting in a large conference room and a senior nurse is presenting at the front of the room. I know her face but I just can’t place her. I just assume I have seen her on my long conference circuit – I meet so many people these days I find it impossible to remember everyone – but my capacity to remember faces hasn’t gone away, so inevitably these day I often start conversations by saying ‘I know you, don’t I?…..’

Yesterday, I’m standing at the coffee station at another event and a nurse comes over to me and says I just wanted to say ‘hello’, I’m from this Trust and you came to speak to us and I’ve done this since then’.

Another day, I’m waiting in line in the loo (there is always a queue in the ladies and I’ve never been one of those women who is confident enough to dive into the men’s) and a lady comes up to me and says – ‘I just needed to say hello and tell you what happened. You made me realise that I had a passion for informatics, that my organisation at the time couldn’t give me the role I needed to feel fulfilled and now I have a new job in a new organisation where I love it!’ She was beaming.

ward sisterThe first of these examples culminated in the lady coming over to me at the end and saying ‘You are Anne Cooper aren’t you?’ She had been a student, and then newly qualified staff nurse, when I was a ward sister. For some reason, work related, 25 years ago, I had invited her to my home. She remembered it; she could recall my first little marital house and exactly where she had parked. I started to remember her a little. She told me that I had been ‘inspirational’, that I was doing all sorts of things (sounds like me I guess) and she had remembered me from all those years ago. Then we jointly reminisced about the good old days and our shared experiences; it was a good conversation.  The photo is of me at almost exactly that time.  The hospital that I loved no longer exists – its an Asda and a housing estate now – how time flies!

roffeyNow, words like inspirational make me squirm a little. It seems so ethereal, so non-specific and hard to pin down….. this post isn’t about that. It’s about impact and role modelling.

I wrote a post a while ago – you can see it here – about how we tend to focus on people we can role model from and less on how we, ourselves, are role models and what this means.

These conversations I have had this week bring me back to that thinking. Sometimes it’s the small things we say and do, that we see as having little consequence, that have a big impact on others. Being a leader is hard. Sometimes feedback takes its time to come back to you – in this case 25 years – but I was proud and humbled when these incredible women took the time to approach me and be so lovely.  It makes me squirm a little but it also makes me feel good that I may have had a positive impact on people.

‘Every moment and every event of every man’s life on earth plants something in his soul’

Thomas Merton

Reflections from me:

  • Try to be your very best with others all the time, be a positive role model, as you don’t know the lasting impact you are having.
  • If someone has done something that is important to you tell them! That matters too!

lead by example

‘Don’t judge each day by the harvest you reap but by the seeds you plant’

Robert Louis Stevenson

Informatics skills – If you always do


‘If you always do what you have always done,

you will always get what you always got’

I see this everywhere, urging us to change; I am a bit bored with it to be honest but it does have an irritating ring of truth about it.

Nurse keyboardI’ve been thinking about the skills that nurses, midwives and health visitors need now and for the future over the last week, as a result of meeting 100s of nurses and talking to them about informatics. What I do know is that technology has already impacted on practice and I feel sure it will continue to do so. These days, as I only spend short rare periods on the ward, I often can’t use a piece of new equipment and have to ask someone to help. Informatics – that is both the use of information resources and technology – have an insidious impact on practice and increasingly are woven into the work we do with patients.

dream jobWhy is it then that we continue to write job descriptions (JDs) that could have been written 2 decades ago when I was a ward sister? They seem old fashioned and if they are trying to describe what nurses need to do they are dull, dull, dull. Nursing is one of the most exciting and diverse jobs I can think of yet if you go and pick up a vacancy on NHS Jobs and open the job description I suspect you might feel underwhelmed. In a competitive labour market surely we need to do better than this? These JDs are like a window into your organisations!

Two years ago I collaborated on a piece of work with Professor Dawn Dowding. We randomly sampled job descriptions taken from NHS Jobs on a single day and analysed them to look for the skills relating to informatics. I was yet again underwhelmed. You can see the full publication here (sorry its pay walled).

In a world where using information and technology are almost routine parts of our lives these JDs were shocking. Few referred to using information in a modern way although there were oblique references to some of these concepts. 16571920_sOne of the most powerful feelings I came away with was the rules driven Information Governance agenda with the focus on ‘thou shall not’ with no focus what-so-ever on how sharing information can improve safety. I am pleased that since then the Caldicott 2 review has corrected this perception but a quick scan on NHS Jobs reveals that this is still not evident in JDs.

Nursing is a modern profession. It is continually reshaping itself to meet the needs of the people we care for. Job Descriptions reflect how we see roles, how we recruit people with the skills to do the job and these in turn inform workforce plans that help us to educate the future workforce. We need modern nurses who are skilled users of information and technology to meet the challenges of the future. But if we always describe nursing in the ways often expressed in JDs, we will always get what we always got!

Here is a my take on a redraft – Nurse Draft JD – as an example of a more modern JD. I am not saying it is right, it was developed with my particular focus and was drafted before the 6Cs Compassion in Practice strategy but I believe it has the informatics skills woven through it, just like the use of information and technology are woven into practice. I just wanted to show how informatics could be described without asking for ‘Computer Skills’!!!!

We need to up our game.

technology future