Information Governance Ironies

Going to the hospital always frustrates me but it is an opportunity to watch – people and processes, communication and clues on culture.

waiting chairsI’m actually writing this sat patiently in the waiting area – we have just been told the clinic is running more than an hour late. So I watch people come and people go.

Last time I was here I wrote a blog about information governance, about how, when you arrive in clinic, you have to declare all your personal details to the full waiting room. I did give them this feedback by the way and I also recognize the challenges in the clinic area. Today the same ritual continues.

[pause – I’ve been in to see the doctor who was lovely. But I’m back for another wait…. so I continue…..]

I am not sure that declaring your personal identifiable information in public is best IG culture.

notesThe next thing made me smile. A man with a big trolley arrives in the clinic. The trolley is piled with notes – over it is a sheet. He gallantly throws it back to reveal and remove a set of notes. Then back again when he is done. Either he is keeping the dust off or he is trying to protect them from view. I gaze on as people adjacent to him continue to declare their full name, address, date of birth and GP including the GPs address!

Meanwhile I overhear someone near me, after seeing the man with the notes tell a story: ‘eeee*’ says the lady to her (assumed) daughter: ‘you will never guess what they told me about my notes?’ The daughter asks for more information. She continues ‘they parceled mine up into a brown paper bag and sealed it with tape when I was going for my scan. I asked them why. They are MY notes after all. She told me they sealed them so I couldn’t open them as they could charge me £15 to look at my notes. This was to stop me looking at them!’

I listen and I watch and I despair.

Nothing really ever changes very much.


I’m being called again…..

*’eeeee’ is a Yorkshire expression that preceeds an interesting fact!

Practicing what I preach – role modelling and social media

This blog is a bit of an experiment :0)

lead by exampleDespite not really setting out with any grand intentions in mind, I was identified as a Social Pioneer by the Nursing Times in 2014, mainly for both my promotion of engagement with people with long-term conditions on Social Media but also for my work with professionals in encouraging and role modelling.

I believe that in a modern society nurses should be digitally competent and have a high level of digital professionalism in order to:

‘uphold the reputation of your profession at all times. You should display a personal commitment to the standards of practice and behaviour set out in the Code. You should be a model of integrity and leadership for others to aspire to. This should lead to trust and confidence in the profession from patients, people receiving care, other healthcare professionals and the public.’ (Extract from the Code, NMC 2015)

I try hard to do this at all times and aspire to role model digital behaviours. Here are some examples of how I try to do this:

  • I work hard at holding professional conversations at the same time as maintaining a balance of being human and authentic.
  • I try to help others if they seem to be struggling.
  • I add value through adding content and materials that further nursing.
  • I share my knowledge of social media and have worked with NHSIQ to produce a simple film for practitioners – see here.

As part of my nursing revalidation I need to collect feedback about my practice.

It would be really brilliant if you could leave a comment for me below that I can use to further reflect for my professional portfolio!

Constructive feedback from anyone is welcomed, not just other nurses. Feedback from patients and students is particularly welcomed.


Thank you so much xxx

Thank you so much xxx

Dear anniecoops

I had a complicated teenage years. At 14 nearly 15 I found myself looking after a house and Dad after our Mam had left; Dad was clueless, he didn’t even know how to write a cheque let alone look after all the household affairs. Mam had done it all. I picked up where she left off.Anne 1975

The foundations of our lives are laid down in our early years. As a result of these circumstances independence has always been really important to me. I left school at 16, having been one of the top stream at school, and started work in a bank. I was, of course, advised to go to University – nearly all my contemporaries did exactly that – but wanting to be able to look after myself was a key objective for me and financial independence a key driver.

It was 6 weeks into my first proper job that I started to feel unwell. There was a small supermarket next door to the bank and I was buying can after can of pop to drink – I felt so thirsty. As a result of my drinking I was constantly up going to the loo at night. Classic, had I known it, symptoms of type 1 Diabetes.

I think it must have been the tiredness that did for me and after a little while I decided I really didn’t feel right and went to see my GP. In those days he took a blood sample himself to send off to the lab.

Two days later I was out with my boyfriend – on the motorbike where we spent all our spare time – when the GP came knocking on the door to ask me to go to the hospital. He was non-too pleased when Dad told him I wasn’t at home and of course we had no mobile phones back then so I was summoned to North Ormesby Hospital early the next day. It was there, at 16, on my own, I was told I had Diabetes.

005The experience of being on an adult female medical ward at 16 was fundamental, I think, to my deciding to become a nurse. But this blog is more about what things I would tell myself, the things I have learnt about having Type 1 Diabetes in the 36 that have passed; things I couldn’t have known. They are not all things I have done wrong – some of them are a celebration of things I feel I have done right too.

You can do it yourself

For me taking control and being independent has been key to the way I have managed to live the last 36 years. There are only two times in the last 36 years that anyone else has given me my insulin injection – the first was the very first time when a nurse showed me how, the second was when I let my husband have one go to see if he could do it, ‘just in case’. Diabetes usually needs you to do exactly that – take control. I think I have done this well and I have refused to let Diabetes be the dominant part of my life.

I would say: ‘Don’t worry – you can do this yourself’

Finding Diabetes friends

I learnt this lesson much later in my Diabetes career but I wish I had known it sooner – knowing other people who have Type 1 has really been helpful in the last 5 years or so. I have found new friends on social media, people who inspire me, have helped me, make me laugh and I know I have helped some people too. I just wish someone had told me, encouraged me and helped me 36 years ago when I was 16. I really could have done with a mate!

I would say: ‘Go find people to connect with who have type 1 too, they will understand better than anyone else’.

Never stop learning

It took me a long time to realise that keeping up with what is happening in Diabetes care can be really powerful. For many years I took no interest. I let my (then) British Diabetic Association (BDA) membership lapse and just carried on in exactly the same way for many, many years. Diabetes is complicated and I wish I had carried on learning constantly throughout the last few decades.  I think this is partly about ignoring my Diabetes; I don’t mean not looking after myself, but only caring about knowing enough to live.

I would say: ‘Never stop trying to learn more about Diabetes, it will help you to both improve the quality of your self-care but also make sure you know when treatments have improved as no one will necessarily seek you out to tell you’.

Almost everything is possible but some things are a bit harder than others

ward sisterI have never let my Diabetes get in the way but it can be a bit of a challenge. I remember people doubting that having a baby would be OK but it was, I remember a school of nursing telling me that they didn’t take people with Type 1 Diabetes for nurse training but someone else did and I remember working night shifts and wondering if I would cope but I did. Sometimes things are a bit harder than others but I have never let my Diabetes stop me from doing things I really wanted to do.

I would say: ‘Almost everything is possible but you might have to plan a little bit more than other people, perhaps less spontaneous but doable nonetheless’.

Ignoring it won’t mean it goes away

Finally I would tell myself that trying to ignore Diabetes and pretend it isn’t there doesn’t mean it will go away. I learnt too late that testing blood glucose is a good thing to do and to do it for me not for the doctor. It’s better to know what’s happening and I care more about it than anyone else. But then it’s easier these days – 5 seconds was unimaginable back in the late 70’s, we were still testing urine in test tubes then. Technology has improved our ability to feel in control without it being the centre of our lives; for this I am grateful.

I would say: ‘Test more and learn about your body. Ignoring it and doing the minimum isn’t the answer but you can be in control of Diabetes without it being in control of your life.

Finally, AnnieCoops, love, laugh and hug more. Diabetes doesn’t stop you doing any of those things :0)IMG_3687


Anne 1986A good friend and colleague, Dr Mark Davies, blogged this week and set me thinking. His blog was his reflections on leaving general practice having been a GP for 21 years; what things had he wished he had known at the start of that journey. This blog is my attempt to guide 19 year old Anne on her journey and career in nursing that started on 31st January 1983 – what #5things would I like to tell myself.

They are not listed in any particular order:

  1.    Put your hand up

It took me a while to learn this but I did get it in the end – when there are jobs to be done, projects to develop and deliver – put your hand up. It doesn’t matter what the project is really and in many ways the projects that no one else really wants to do have been the most rewarding. I learnt slowly that my nursing career was often enriched by un-expected things. I think the point where I really got it was when I became fascinated by complaints from patients and their friends and families. I didn’t think what we did with these precious letters was right, so I set about looking into the process as a project for a management course. I ended up telling the Chief Executive that the organisation should have a complaints manager and that should be me. He offered me the job and I never looked back – it was one of the best opportunities I have ever had to really understand the experience of patients.

Never fail to volunteer – you are unlikely to regret it.

2.     We never know the impact of what we doward sister

I remember once meeting a nurse on a platform at a local station. She knew me but I didn’t know her. She approached me and told me that she had been a student on the ward where I had been a ward sister many many, years ago. I, sadly, couldn’t remember her. She went on to tell me how that ward experience had been fundamental to the choices she went on to make in her nursing career.

I think it’s scary to think that people watch us all the time and we may make an indelible mark on their lives. Patients will remember if we were kind, or not. Relatives will remember if we were helpful and smiled. Students will remember if we were patient and supportive.

Being watched all the time can be a burden but it can also be a fantastic opportunity to make a real difference.

Hold that thought in your head in everything you do.

3.     The importance of rehabilitation

My Grandad who had COPD and always wanted to do as much as he could including walking Trixie

My Grandad who had COPD and always wanted to do as much as he could including walking Trixie

I learnt this far too late in my career, I wish I had known it 30 years ago – the importance of rehabilitation and letting the patient set their own targets.

I have worked in acute settings for nearly all my hospital career. I was always in settings where we were dealing with the most acute type of medicine; chest pain and respiratory failure in the main. Looking back it strikes me that we had a ‘fix them up’ attitude and ‘get them home’.

More lately I have spent a small amount of time working with a fabulous advanced nurse practitioner in elderly rehabilitation and I learnt so much.

The most powerful thing was asking an elderly patient ‘What’s the best that you think you can be?’ then working with them on helping them achieve their goal.

I believe that we should have patient driven care – the phrase patient centred care no longer satisfies me.

My learning – how can we support people to take as much control as they feel able to take and achieve their own goals?

4.        Politics (small p) is not a dirty business

When I was a fresh faced staff nurse I didn’t believe I needed to understand or get involved in politics, but I was wrong. Over time I came to realise that power and politics go hand in hand and even if you don’t want to dabble in the Machiavellian arts you need to understand them.  It’s naïve to think that you can get difficult things done unless you understand where the power is and how it all works. I still think it would be simpler not to need to understand these things but I now know that that is unrealistic.

Get to know where the power lies and how the system really works if you want to do things for good.

5.        Love yourself and be kind to yourselfkindness

Like many people there is no one harder on me than me. I drive myself hard, I take on too much and I hate it when I do something that hurts someone or is tactless; beating myself up through sleepless nights and tears is not unknown.

But I have learnt that no-one is perfect and that I know I am essentially a good person and although I still find it hard I can forgive myself more readily.

I have learnt to love myself a little and try harder to be kind to myself.

#5things I wish I had known. I am sure there are more and these are the things that came into my head today – I am sure my learning is not done yet!

never stop learning

People Drive Digital Reflections

networkI have been to NHS EXPO today. As always it was great to meet lots of people I have met and worked with over a number of years; I love seeing them, giving them a hug and re-connecting with them (you all know who you are). It is one of the privileges of my working life that I have met so many fabulous people.

Today was interesting for me as I didn’t go to EXPO in my professional capacity but in a personal one, as someone who has an interest in digital innovation but from the perspective of a citizen and patient and today felt very different – but is it EXPO that has changed or me?

PDDigitalToday I briefly presented with Victoria Betton and Mark Brown the work we have done on People Driven Digital and the PDD Awards (HT to the others too Michael Seres, Kat McComack). I realised that I had changed from a year ago.

I spent many years as a nurse giving patients advice and information. We thought it was the right thing to do and of course it is but it’s also paternalistic, based on the assumption that ‘we’ know and ‘they’ don’t.

Over the last year my experiences of working in collaboration with other people like my fellow collaborators for #PDDigital, and many others in my social network with Diabetes, has made me realise that the system doesn’t know what problems people face as intimately as they do. We can make assumptions, we can guess and in doing so we may well get it wrong; we may hit the target and miss the point. Mark spoke eloquently today (you can read what he said here and it’s well worth a read) about focussing on trying to find digital solutions to those issues that really matter to people, not necessarily the big things but those that in people’s lives make a real difference. You can see our presentation here

So today, whilst I wandered around EXPO, I reflected on what felt ‘real’ and what maybe mattered the most. There was little evidence of people driving solutions and creating ideas and I realised I had changed. I have come to realise that unless we engage at the start with the citizens, we are unlikely to make the differences we need to make. We might create elaborate solutions but may completely miss the point. We need People Driven Digital Innovation.

pump openerI have an example: I was a grateful receiver of a new insulin pump a few months ago. It has a snazzy screen and some new functionality that means if you are a user of a continuous glucose monitor (I am not funded to be one) then it will switch off the delivery of insulin if your blood glucose goes too low – very clever indeed. But what was it that delighted me when I collected my pump? On my old pump, in order to access the battery to replace it (yes insulin pump are powered by a traditional AA battery!!) I had to carry a 20p coin in my bag. It’s the only reliable way to be able to open the battery space – it’s tricky but fairly crucial to be able to get in! On my new pump there is a removable clip that had a snazzy little device on the end that enables you to open the battery space. A simple remoulding of the clip – inexpensive and functional – I know, I know, so simple – but it was the snazzy solution for the battery opener that delighted me. A small but delightful improvement and now I don’t worry about 20p pieces. Let’s try focussing on the small things that might matter to people.

How do you think we could develop the ideas from #PDDigital? Let us know.

About being Kind and Adjectives

cropped-img_16971.jpgI am very lucky; people often say nice things to me when I work with them or meet them professionally.  Not all the time of course  – I feel sure I irritate some and that others actively dislike me but I do my best to be myself, to set my own standards and to be authentic.  I have previously blogged about authenticity so I feel confident they are responding to the real me these days.  I have relaxed into being me and increasingly only know this way.

What I find confusing though is the feedback I get and I can’t decide if it matters or if its just another thing I need to relax into, I mean is this enough?

When people say nice things to me I often ask ‘What do you mean? Can you tell me exactly what I did that made you feel x or y?’.

Their response is most often ‘you are kind’.

kindnessI struggle with this – I wonder why kindness is something that isn’t ordinary and deserves feedback in this way.  Am I being damned with faint praise?  I’m not being disingenuous (or looking for reinforcement) – but isn’t kindness ordinary? I honestly don’t understand the feedback.  I’m not looking for more kind (there it is that word again) words but why is the quality of being friendly, generous, and considerate (definition of kindness) seemingly of note?

So I have thought about all of the adjectives I would like to be and am thinking perhaps need to try a bit harder! Here’s the list:

  • Clever
  • Musical (I think I can sing but I fear its not musical)
  • Creative
  • Loving (I need to practice this a lot more)
  • Generous (there are some things I would struggle to give away)
  • Knowledgeable
  • Funny ( I would so love to be funny – if you don’t know what I mean look up @gussiegrips)
  • Sassy
  • Agile
  • Flexible (I can’t even touch my own toes)
  • Athletic
  • Brave (r)
  • Focussed (To say I’m butterfly like is being kind!)
  • (more) organised

Don’t even get me started on the list of things I don’t want to be!

Well that’s my list for today.  Do you have a list of adjectives you would like to be described as?

Passing on the baton

passing the batonFor any of you who know me today, you might find this hard to believe, but I was often picked for the 4×4 100m relay team at school. OK – I wasn’t the first choice, probably the fourth – but, hey, chosen I was, and I learnt how to pass the baton.

For those of you who have ever run in relay you might remember being taught how purposeful that baton passing on needs to be; a process of firmly slapping the baton into the hands of the recipient, so they know they have got it and they can confidently stretch and run to the end of their leg. As I was often the second or third to run I was both the ‘receiver’ and ‘passer’ of the baton. Being passed the baton as efficiently and effectively as possible with no margins for error is a learnt skill and although my speed might not have always been what they hoped I don’t remember having a problem with baton passing.

So here I am many years later reflecting that now is the time to start to think about my baton passing technique in earnest again but it’s a slightly different race.

I was always ambitious and serious. Even when I was a student nurse, I secretly wanted to be the nursing officer or manager because I believed that way I had more influence over what happened to patients. I was shrewd, I knew that managers wielded the power to make a positive difference. I then went on to make some less orthodox choices, still related to trying to change things, and in many ways that’s how I ended up in informatics, I believed (and still do even more so) that information and technology can help citizens and patients for good.belt and badges

But I find myself at a time in my career when I’m thinking differently about the future, having conversations with friends saying things like ‘I have one big job left in me’, talking in ways I have never spoken before, as if the end is in sight. Sounds dramatic? Feels it too and slightly scary.

Perhaps its natural progression as I gaze forwards to times when I have more time to choose what I do and where I give my time and effort to making a difference in other ways – I don’t mean not working but I do mean working in different ways.

What I know is that this means I need to brush up on baton passing on again. If I hold any knowledge and skills how can I pass them on; how can I baton pass without taking my eye off the forwards race and still keep running as fast as I can?

I have written about eldership before and my thoughts keep coming back to the same thoughts. How can I help the people picking up the race beyond me? How can I make sure we don’t stall and drop any batons?

Supporting and investing in leaders of the future is what I need to do but it’s not always easy.  Broach a conversation about succession planning and people gaze at you as if you are giving up, rolling over and lack ambition – I’m not and I don’t. What I am doing is adjusting my focus, making sure I pass my baton on. Informatics is still hard, the hardest gig I have ever had, in a profession that, in the main, still seems to kick back against it despite predictions that digital is part of the future of health. So I’m focussed on finding the nursing digital leaders who I can pass the baton on to, but it’s a long time since I’ve passed any batons so I may be a bit clumsy at first but I will improve so watch out… I could be passing the baton to you! ;)hand waiting for baton