‘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

 

Exploring New Territories


It was a usual morning with an early start at 6 o’clock to get the train from Wakefield to London. It was all pretty much typical, Costa coffee in hand and sat waiting patiently, shivering, on the station platform, as I always arrive early. As is also usual, I’m filling in those pockets of time with my Twitter feed on my beloved iPhone and I notice that the HSJ were announcing their first ’Social Pioneers’. As I do, I flick it open and the first thing I notice is a lovely picture of the lovely Teresa Chinn. Then as I scrolled down, there I was: gobsmacked – me a ‘Social Pioneer’?

I am passionate about how information empowers. Information can bring independence and create changes and shift in social order. So bringing information to nurses can enable them to improve their practice, see things in new ways, revolutionise and encourage improvement as well as spotlighting where things might not be right. For citizens, information can drive real change, be disruptive in creating new paradigms of systems and behaviours; I think that ‘Patients Like Me’ is one of the best examples I can think of that shows this; have a look at this story to see what I mean:

Frustrated ALS Patients Concoct Their Own Drug’ The Wall Street Journal, April 15th 2012

This powerful very short TedTalk from Stanley McChystal is about how having the confidence to open up information can make significant differences to what happens and illustrates my point too.

 

‘Information is only of value if you give it to the people who can do something with it’ Stanley McChrystal 2014

‘Sharing is power’ Stanley McChystal 2014

So what has this got to do with me being a ‘Social Pioneer’?

In around 2010 I discovered social media. I’m naturally curious and experimental so, curiosity prompted, I wander into social media. Wandering is a good description – I had little knowledge beyond being a Facebook user, no skills and little insight = scary!

What I discovered was a space that I think has huge potential for nurses but also those people who have health needs – it has the power to transform some aspects of how we use information.

What I also discovered amongst the nursing community was a reticence, anxiety and resistance and sometimes all of these things are still present. It frustrates me sometimes that I sense a lack of professional confidence about using social media and experimenting with its potential amongst many nurses. I also discovered people who I now realise are social pioneers, people with long term conditions and experiences of the health system that I started to follow and watch – I was amazed.

I saw the huge untapped potential that I believe social media offers us. Yes, it breaks down boundaries and flattens hierarchies, but it also has the real potential to change the very nature of the power based relationship between systems and people. I also believe it still has untapped public health potential but it has to move beyond broadcasting to achieve the possible.

So in 2010 I decided that one of the things that was needed were some role models in nursing that showed what could be achieved and as no one else (other than a few notable exceptions like Teresa @agencynurse and a few other pioneers) were taking that on, I decided that I would. If I was to show the power of social media I needed to ‘show’ it, not just point at it; doing presentations about social media is one thing but living it is another. So my ambition was to be a good role model for nurses in social media. That’s when the real pioneer journey began. My delight on being identified as a social pioneer was partly to do with feeling that it was evidence that I had, at least partly, achieved some of what I had set out to do.

In my journey I also discovered a very eclectic diabetes community and I am proud to say that I have also been part of that, making I hope, a contribution based largely on my 35 years of living with type 1 diabetes but of course combined with my other skills and knowledge. I have written with another social pioneer – @parthakar (whom I have never met in real life but know that I will :)  )  about the use of social media in the professional interface between professionals and patients – this would never have happened without Twitter. Here it is:

‘A New Dawn: the Role of Social media in Diabetes Education’

pionee signpost

Famous signpost with directions to world landmarks in Pioneer Courthouse Square, Portland, Oregon

That’s why the word ‘pioneer’ was the part that gave me the most satisfaction when I read the piece in the Nursing Times and Health Service Journal supplement. I was also cited alongside many people I greatly admire – each has made a unique and significant contribution. I was delighted that the write up picked up some of the very things I was trying so hard to do, rather than just my level of frenetic activity! That’s exactly what I set out to do, to start to chart the new territory of social media for patients and nurses and other people who are part of the big NHS and social care extended family and I hope I am a little part of an enduring story.

FlorenceI also came to realise that being called a ‘pioneer’ gave me great satisfaction for other reasons; I have always taken on roles in leading (and sometime ‘bleeding’) edge environments; complaints management in 1990 (listening to complaints then was not what it is now), NHS Direct, the National Programme for IT and informatics is still, in its own way, pioneering. There is also the point that nursing has a strong history of pioneers like Mary Seacole and Florence Nightingale – fantastic role models.

So on Wednesday I celebrated with a very large piece of cake!

Anne Cooper – ‘Social Pioneer’ – who would have thought it! Now where is the next territory to explore?

So that’s enough about me (a very self-indulgent blog this week AnnieCoops!): A very big thank you to everyone who was kind enough to nominate me (you know who you are), the Nursing Times and Health Service Journal and the lovely judges: Jenni, Andrew, Shaun and Emma. But also I couldn’t be social without conversations and it is those people who increasingly have the confidence to share, debate, support and push conversations in social media that I need to thank. Your conversations, blogs, video blogs inspire me, help me to grow and learn, support me and enable me to see new futures – thank you.

Cake

 

 

My response to NMC and the revised Code


The Nursing and Midwifery Council in the UK is consulting in a second round on ‘The Code: standards, performance and ethics for nurses and midwives’.  This round of consultation follows a 6 month consultation on revalidation and links a revised code to the revalidation process.

The Code is the foundation of good nursing and midwifery practice, and a key tool in safeguarding the health and wellbeing of the public.

Since the last drafting of the Code social media has become an increasingly prevalent part of modern society; not just for nurses but also for the public they serve. As such, I am grateful that there is a reference to social media in the re-drafted code – it is important that the regulator and the professions recognise the emerging need for digital professionalism, that is the need for principles of personal and professional nursing practice to be applied in a digital space.

You can see the draft code here

This blog post contains the consultation feedback I will be offering in relation to point 114 relating to social media.

First of all it is important to point out that the code is also supported by NMC guidelines relating to social media that can be found here:

This is the current draft wording in The Code:

‘114. You must ensure that you use social networking sites and other forms of electronic communication responsibly and in-line with our guidance, in particular by not referring to employers, colleagues or past or current people you have cared for’ (page 19)

Of course the use of social media is also governed by other parts of the code, for example:
Maintain clear professional boundaries (page 7)
Uphold the reputation of your profession (page 8)
Be open and honest and act with integrity (page 8)
You must respect people’s right to confidentiality (page 10)

The main issue that concerns me relating to point 114, and what I consider to be responsible professional digital behaviours, is the draft wording ‘not referring to employers’. I do not see how this is needed as part of the code. Social media platforms often allow professionals to include details of their employer in a profile statement and indeed LinkedIn (a widely used social media platform) allows the use of an on-line CV where past and previous employment is cited. If nurses and midwives are also following the other parts of the code detailed above then the addition of ‘employer’ in this list seems overly restrictive.  I do not understand why nurses and midwives are unable, should they wish to do so, give details of where they work, in an open and transparent society.

I would propose that more appropriate wording could be:

‘You must ensure that you use social networking sites and other forms of electronic communication responsibly and in-line with our guidance, in particular by respecting the confidence of colleagues or past or current people you have cared for’

I would also recommend a subsequent review of the guidelines for use of social media by nurses who are skilled and understand the medium to take account of the emerging use of digital media in supporting patients, for example school nurses who are using Facebook to support young people and the use of social media for providing peer connections for patients with long term conditions.

If you would like to make your voice heard as part of the consultation – whether you be a member of the public or a professional – you can do so here:

These is my personal consultation feedback, as a registrant, and may not be the view of my employer.

social media network

Guest Blog: Compassion – a MARLARKEY or a CASE FOR CHANGE?


Maxine 2014This is a guest blog from my friend and colleague Maxine Craig who is Head of Organisation Development at South Tees NHS Trust and visiting Professor ( Sunderland University).

Maxine can be found on Twitter on @Maxine_craig and she would welcome conversations about this blog.

Maxine’s blog speaks for itself – so here it is:

This week whilst at a training event in the coffee break a lady approached me and asked me “Was I Maxine Craig who is part of this ‘NHS Compassion Malarkey’? ” – now this has hit a nerve!

Maxine nursing

I have worked in the NHS since I was 17 and this ‘malarkey’ has been my life for 33 years. Ensuring patients get the best we can give and staff are well and healthy is my purpose. It’s no malarkey!

 

This is what a malarkey is:

malarky

I believe there is a compelling case for change in the delivery of care; the latest Panorama programme surely reinforces that? – Yet I sense that a back lash about compassion is building.

For the past year I have been making myself available to help people think about the issues we face, making spaces where people can think more deeply about compassion in our lives. And I am learning that everyone I speak to in the NHS, social care and wider society recognises that something about it needs fixing. Everyone appears to have a perspective on the general lack of compassion in the wider world and that the NHS needs to ‘do’ compassion better.

elderly lady

This is a real puzzle for me. I work in a great organisation and I witness compassion every day, in abundance, and I see situations where compassion in lacking; It’s not as clear cut as the media would have everyone think. I am worried that being compassionate is becoming an industry in our health and social care settings, others also express this view and some are becoming cynical of anything with a compassion label. I would like us to pick out and continue the genuine good work.

In all of my learning I have found that people find talking about compassion rather uncomfortable. Yes, everyone has an opinion, a surface view. Some people have been deeply affected by a positive experience of compassion in their lives and some hurt by a gap in compassion. Everyone who comes to talk about compassion has some interest, and I have noticed that many have some degree of discomfort.

angry womanI think this is because it’s about all of us, not just the bad guys who don’t do it! It has the potential to make us feel guilty, uncomfortable about our personal struggles and challenges.

At a system level the NHS voices that it wishes to improve compassion but it continues to work in a non-compassionate way and I suspect the care sector is the same. This is a paradox. I do not believe this is a ‘problem’ that needs to be solved but see it as more of a societal context, leaving me as an OD practitioner with a complex and sometimes frustrating dynamic to work in. So I am working to explore and practice the ‘HOW’ of increasing compassion in our system – I want to get on and DO something about it not just talk about it!
 

The NHS is deeply evidence based. In some parts this might be more espoused theory than theory in use, but it is an important guiding principle. We also wear the cloak of evidence as a defence. Another important fact is that many professionals and managers (and I include myself in this group), actually were professionally socialised at a point in time when the control of emotions and ‘not getting emotionally involved with the patient’ were prized professional competences. The new world of the psychology of work offers a different view, with burn out, compassion fatigue and emotional labour as key and important phenomenon. It is important we remember the shift which has occurred within one generation. As a result of this shift the current reality of the compassionate intervention is very challenging for some.

the compassionate mindSo I have learned that the very best way into these conversations about compassion and the psychology of work and caring is via the science. The work of Paul Gilbert who established the Compassionate Mind foundation gives us the basis of the neuroscience of emotion (you can read more here) and I have been able to link this to stress in life and wider society.

Tree huggingI have witnessed the relief in people when they come to talk about compassion and are met with the evidence base. It welcomes them in, it is a context they know, it allows them to be open to the practice of compassion. When coming to a talk about compassion people have shared with me that they were worried it would be too soft and fluffy. When I have explored what this means some people say they don’t want ‘new age’ or religious or spiritual. So like all good change agents let’s start where people are at – let’s start with the science!change agent

Compassion is no malarkey; it’s vital and too important to be pushed aside because it makes us uncomfortable.

I am DIGGING IN for the long haul on this one – I want to make sure the NHS and care system is good enough for my dad. Will you join me?

Maxine's Dad