Charting the passage of time


 

My favourite shot from 2014

My favourite shot from 2014

Some of you will remember last year, on the final day of my 50th year I had some photographs taken with my best friend. We went to Scarborough and had fun having a series of lovely photographs taken in the fresh air at Scarborough Spa. I enjoyed it very much. I found Jess Petrie, the photographer, totally by fluke – I wanted a female photographer, who I thought was up for middle aged, some fun but also someone who did natural photography – no studio shots for us.

So one year on – I sometimes get funny ideas – and those photos and the pleasure they gave me, gave me ideas…. What if my BFF and I had a photo shoot with Jess every year for the next decade, charting our 50’s? A sort of record of our aging.

Leeds-Portrait-PhotographySo that’s the plan and I hope we make it, taking nothing for granted. I will count each year as a blessing and watch as we grow older, hopefully with grace!

Each year will have a theme – this year I chose shopping in Leeds, a place I love very much and Max and I used to work and have often shopped together.

Here are a sample from #Taketwo 2015

You can find out more about Jess Petrie, our photographer here. She is a wonderful photographer!

Leeds-Portrait-PhotographyLeeds-Portrait-PhotographyLeeds-Portrait-PhotographyLeeds-Portrait-PhotographyLeeds-Portrait-PhotographyLeeds-Portrait-PhotographyLeeds-Portrait-PhotographyLeeds-Portrait-Photographyanne max book shop

Trying to make it look easy


I stand. I’m not quite sure what to do, the lights are flashing, I look up to see if I can work out what I’m supposed to do but I feel confused. I know I need food but I also have to pay and I just can’t work out where the tills are. I don’t know how long I stand there, minutes, but I know I need to move.Diabetes

I had been busy, focussed, trying to fit stuff in and get everything done. I had popped out to buy a present for a girl who was leaving and we didn’t have too much time so we needed to crack on. I suspect I felt a bit light headed then but I was absolutely focussed on task, it was only afterwards that I realised I needed to eat.

No matter what everyone tells you about being prepared, that’s all fine, but when my brain is struggling and thoughts are fuzzy I am not always as logical as I could be. I did have hypo treatment tablets in my bag but I seemed to have forgotten all about those. Believe it or not in a city centre buying food, preferably fast acting junk food, isn’t as easy as it sounds. I bought some Jellies from Thornton’s and crammed a few into my mouth, barely chewing, merely trying to ingest as quickly as possible.

Sometimes, for some reason that doesn’t always seem to bear any relevance to logic, it seems harder to bring my blood glucose up. It’s a rare event but nevertheless happens now and again. I needed something to drink, something with sugar. I knew what I needed to do. I walked through the shop doorway and stood.drinks

I stand a while. No one seems to notice. I close my eyes and try to think. I walk a few steps, wander past the isles. I see a fridge and eventually a grab a drink. But where are the tills? I feel mildly panicky. I can’t drink the drink without paying can I?

This happened to me two weeks ago. I manage this day, as I have managed for 36 years. Eventually I feel marginally better and slowly make my way back to the office. I tell no one and get on with my work. I know that there will be an inevitable rebound high so I keep a close eye on my blood glucose but giving myself more insulin seems counter-intuitive and I worry – too little and I will feel rubbish through ketones, too much and I will bounce down again…. It feels a little bit like Russian roulette.

I tell no one because I don’t want pity. I get on with some work but pack up early and make my way home.

I feel like I have the worst hang-over ever. My head feels sore and slow, my brain reacting to the lack of glucose, objecting and asking me to slow down.

Somehow it seems worse, the recovery, as I get older. It takes me longer to bounce back, to be on top form. This time the feeling of other-world-ness and being in a different space to everyone else persists for another day.

Type 1 Diabetes is hard. It’s a bit hard every single day but that’s OK. But just sometimes it’s more than hard, it’s disabling and frightening.Jelly babies

Do you know what it’s like to feel seriously hypoglycaemic?

Here is what a few of my twitter friends with Type 1 said when I asked them:

IMG_3687

Me and my unofficial carer! He looks lightly scared I know!

Reflections on becoming a befriender


I think it was the autumn of 2013 but it may have been earlier; I watched the Hairy Bikers presenting a programme about trying to set up a meals on wheels service in Slaithwaite (pronounced Slawit) which is not so far from where I live. There was an old gentleman who cried when they arrived as he hadn’t seen or spoken to a soul since they had been the previous week; my heart broke.Loneliness empty bench

I mulled it over. Thought about it. I knew I wanted to do something but what?

I find the thought of loneliness distressing. This article from the BBC website  shows how people in 2001 were less connected to their communities (anomie) in 2001 than back in 1972. Age UK campaign to bring attention to the loneliness amongst older people:

 Loneliness is key indicator of social exclusion/disengagement and is a significant problem for older people. Approximately 10% of those aged 65+ in England report severe loneliness with a further 32% moderate levels of loneliness which represents 777,690 and 2.2 million individuals respectively. Loneliness has important negative consequences for both older adults and society being associated with a range of negative health, social and service use outcomes. Rates of mortality for older people who are lonely are reported as 50% higher; emergency hospital admissions are a third higher and GP consultation rates 3 times higher compared with their non lonely peers.

http://www.ageuk.org.uk/documents/en-gb/for-professionals/research/loneliness.pdf?dtrk=true

But Age UK, as I do, also recognise it is a complex problem.

As a result of these musings I decided at the start of 2013 that I would become a befriender. I made a public declaration on Twitter as I know if I say things out-loud I am more likely to do it.

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Friends

The story of my quest to do so is described here  on the blog site of Gill, otherwise known as @whoseshoes .

I did eventually find a way of helping. A great local charity that primarily offers Childrens’ and Learning Disability Services eventually found me on Facebook.

This is my reflection of the journey since then. I have thought hard about writing this down as I did not want to breach the confidence of my friend so the blog is focussed on the reflections from inside of me.

anniecoops Grandad and Trixie 1979

Granddad and Trixie. My grandparents were lucky. we had a close family and they lived in a great community.

The process of being matched to someone who may be lonely is an odd one for the use of the word ‘friend’. You are first (and rightly) checked over and then matched by the charity to someone who you might be able to help. I was complicated to match as I have little time – I’m time poor generally especially during the week – so it had to be weekends. I was almost matched with someone who needed some relief while they were caring for their partner with Dementia. But the be-friending service don’t like you to do that as its seen as more then be-befriending; that made me feel bad as I knew I could easily do that if I had more time. Eventually though I was matched with a lady who is much younger than I had anticipated.

It’s very surreal – my friend is so little like me. We have little in common. Our life patterns are so very different and even our family backgrounds but it’s amazing what eventually creeps through. The relationship is not what I expected. I suppose I expected it to be cosier really, more like the elderly people that I have cared for over the years but it’s not that, not that at all.

At first I found it quite hard. I had to draw on my natural communication skills (Yikes) but has time has passed its getting strangely easier. I try to go at least once a week and if I can’t go I try to ring. Even that is hard now I’m back to working full-time but we manage. When I arrive the kettle goes on and I am presented with my coffee in the same blue mug each week.

I know she likes me and my company – I can tell. I always ring to say I am planning on a visit and she always sounds pleased. I always do what I say I am going to do, keep my promises. We are not allowed even to take gifts but I sneaked two cheese scones down once and she said she loved them. Last week she had some photographs out to show me, her family past and present.

The thing that I have learnt is that loneliness isn’t always what you think it might be and you can be a comfort for people by just showing you care. My friend has family who visit rarely and can get to the shops but I think she is lonely despite these things.

I’m glad I made the commitment and intend to carry on for as long as I can and she wants me to.

When I retire I also plan to do more. I would absolutely love to set up a #henpower project and who knows, now I have said it out louds perhaps I will. You might want to as well if you watch this video – the Hen Men . See what a difference it can make – this project is also a great example of impact.

If you want to explore being a befriender Age UK have some information here:

Or check out Contact the Elderly here:

And look out for more information about hen-power here:

If you want some help if you are lonely please check out the Mind site here:

My little talk for #PDDigital15


This is the warm up talk I gave the evening before #PDDigital15 on 13th May 2015

I happen to have Type 1 Diabetes.

That means by default I am a data monkey; what I mean is someone who is concerned with data all day long, every day.

Raw data

A pile of test strips. Each one a finger prick. Each one a data point.

Diabetes is all about information. Yes, it’s also about your toes and their potential to fall off but it’s also about how we as individuals manage (or don’t) lots of information. This little bag is full of real raw data – a pile of test strips. Each one represents a finger prick and a result showing my blood glucose.

I’ve never been very good at meticulous writing down of numbers. Perhaps my attitude to my diabetes is the issue; it’s not my life, it’s just part of it. When I was diagnosed (in the olden days) the GP came to the house and knocked on the door to say I needed to go into hospital (we didn’t have a phone) but I was out with my boyfriend on his motorbike. I’m not sure my attitude to my health has changed very much!

In the years that followed I was never very good at it. I did test, sporadically, my blood sugar but was always poor at writing it down. It seemed to be the biggest pain in the bum ever. First of all I had to test my urine (yep in a test tube) and then it was what were called BM sticks. Each test took around 5 minutes from start to finish. Five minutes is a long time when most of it is spent watching the colour changes on a small stick. I had lots of things as a young person I would rather be doing! I had a blood spotted book I tried hard to write things down in…. boxes on forms in a little book.

But I never did.

new meter 2

My new meter – they do get better every time :0)

Innovation has always been important in diabetes care. The move to near patient testing where we were given blood glucose meters was a brilliant shift. It was almost life changing and is a great example of Christenson’s disruptive innovation – putting the power – information – in the hands of patients. Suddenly we had a meter that was accurate and over time the time taken to run a test got less and less. But we still had the little books, the need to write things down remained. I know I started testing more when the testing time gradually went down to the 5 seconds it takes today.

What health care professionals think matters isn’t in my experience actually what matters to patients and that’s part of the point of ‘People Driven Digital Health and Wellbeing’. Patients/people/citizens driving developments in the things they think are important.

So I test up to say 8 times a day; 8 data points every day plus all the data from my beloved insulin pump, the other innovation that has changed my life with diabetes.

Yet here we are in 2015 with few ways to analyse my data. Many of the solutions still involve multiple data entry – the 2015 version of writing things down in a little book. It’s just not the answer.

Why? What are the issues?

The first is that there is analytical software but the suppliers seem to think my doctor, who I see once, or maybe if I’m lucky twice a year, needs the data and the analysis tools more than I do – makes no sense. I make micro and macros adjustments every day to my regime – staying well and managing myself. The suppliers have created a system that allows the technology to send data to my doctor and them to use tools to manipulate it but only gives me the most basic functionality. The suppliers market to the doctors and nurses in an old paternalistic model where the clinicians are ‘in-charge’.

The second reason is they are trying to fix the wrong problem. Designers make assumptions about what matters, create solutions, then try to lock us into their system. In my experience they rarely listen*. I want something that is focussed on simple speedy collection of data – no duplicate entry please, and something that allows me to do trend analysis, that’s why I call myself a data monkey.Jelly babies

To cure these issues we need open APIs and standards that allow systems to talk to each other and allow us to move our data around!

Of course there are some very clever people who have diabetes or have children with diabetes, why wouldn’t there be? Brains are not exclusive to those people in the system. In the USA a movement started called #wearenotwaiting. A group of people with a vested interest who decided they would hack into the back of all the equipment we use, pumps, testing meters, analysis software and create something for us. They believe they can create the first closed loop system for diabetes faster than the system can. Of course I know this is a risk but I do believe this is the best hope for us for someone to create something that works for us and gives us more control.

Sadly we still have a long way to go. I know from my professional life that people in the system still think we should be creating solutions so doctors can see the data we enter and that is seen as the issue, whereas I believe we should start with the person with the Long term condition and meet their needs first. Taking a look at #wearenotwaiting would be a great start.

So, for those of us in the data game, every day, even Christmas day, we survive doing ratios, trend analysis, and measuring. We need better solutions and need to be more involved in their development, even in control, in order to get the pace and scale of development we need.

#PowertothePeople

  • Just a postscript to say I collected my new insulin pump the day after the conference – it has some nice new features so perhaps someone is trying to listen! Thank you Medtronic but please can I have the better analytical software? I think I might want it more than my Diabetes Specialist Nurse!

Diabetes

Social media and me


Private_Professional_SoMeFilmStillI think I joined Facebook in 2007; not exactly an early adopter but not a late-comer either. I can remember who sent me the link and why she said I would like it. She was right I did! Before that I was a user of ‘Friends Reunited’ too – you remember that? Where you could look people up from school? I became a Facebook fan and, as smart phones came into my life and I spent increasing amounts of time travelling with my phone in my hand, social media an increasingly important part of my personal life.

A little while later, in 2009, someone at work suggested I join Twitter. I am always curious about new things so I duly logged in and created my account – @anniecoops was born.

In February 2009, when I started my Twitter journey, I took ages to warm up. Like many people who I speak to I didn’t really ‘get’ it and after around 3 months of trying I gave up. Here is my illuminating first tweet :0) first tweet 1 (2)

I can’t remember what made me go back but after those 3 months but I suspect it was a challenge from someone who probably said ‘If you don’t get it, you are probably not trying hard enough’ and I absolutely can’t resist a challenge like that! I met some important friends along the way and by April 2015 I find that I have tweeted 74K times and now have 8600 followers. With the launch of a social media film that I have worked on with @NHSIQ I thought it was time to reflect on that journey and what has happened.

Here is a link to the film

annieAnnie was never my name, I always thought it was a bit twee for me, more of a nice girl name rather than the firm, straight and solid name Anne. I always say Anne is a good name, you can’t shorten it and it’s hard to mess with but I had no idea how ‘Annie’ was going to become part of my life. I had been called ‘Coops’ at work for quite a while and my son in the Cadets was called the same. When I tried to register @annecoops it was gone as was @annecooper. The addition of the ‘i’ to my first name was simply a pragmatic thing to do. I had no idea what was going to happen and that, by 2015, more people at work would call me Annie than Anne!

Facebook_BackyardFence_SoMeFilmStillMy social media journey has been a great addition to my professional life. Later in September 2012 started my wordpress blog and I re-discovered my love of reflecting through writing. By then AnnieCoops had taken hold as my ‘brand’ and also became the name of my blog.

I completely accept that social media is not for everyone – I dislike those who behave as zealots trying to pressurise people into using social media, particularly Twitter. It’s not for everyone but quite often there will be a platform that works for most people – I know lots of people who love Pinterest for example but I personally don’t get it as I clearly prefer the words and feelings that blogs evoke for me. I love Blipfoto as well but I am too ill-disciplined to be properly focussed on trying to improve my photography skills.

Social Media has been a positive experience for me and I thought it might be helpful to say why:

  • Professional inclusion

Working in informatics is hard. It’s like the geek club and most of the time I don’t actually belong in it – I’m tolerated and valued but not quite part of it either. Additionally in nursing informatics still feels peripheral. Back in 2009 I didn’t really think I was part of nursing, I had the sense, rightly or wrongly, that people didn’t really get the digital agenda and as a result I wasn’t really part of the nursing ‘family’ – I was labelled a geek* and therefore not part of where the nursing action was. Twitter changed that for me, I started to talk to other nurses and soon established a new network where I felt like I belonged and I continue to feel part of that family. It has given me a real opportunity to feel professionally re-connected and valued and to re-profile myself as more than the perceived ‘geek’.

  • Creating bridges

BridgesSocial Media has been great for me in making connections and creating bridges to new spaces. New spaces I have been given a glimpse into include connecting with more professionals including doctors, midwives, pharmacists, medical educators, people who working in housing and local government, the voluntary sector, leadership development, organisational development, education – the list is so long I can’t list everyone and I value all those connections more than I can explain. It has given my personal and professional life a greater breadth and depth that would not have been possible without social media. I value the eclectic nature of my connections and social media friends.

  • Being a patient

Being a professional who happens to have a long term condition like T1 Diabetes can be a challenge. I think for many years most of the time I ignored it. Social Media allowed me to not only find a Diabetes family but also to try to add value to that community. I have enjoyed blogging about my condition and also sharing via Twitter some of the ups and downs. I have tried to help others too and to share my expertise as a patient. I wish I had found this opportunity earlier in my life.

  • Access to resources and expertise

One of the very best things about Twitter is the generosity of the people I connect to. I have learnt more in the last few years about so many things and I believe that this is likely to make me a better professional but also a better person. Sharing is not just the technical stuff but thoughts feelings and emotions that help me to understand in a deeper way – it’s a better learning space than any lecture I have ever had at university.

* there is nothing wrong with being a geek it’s just that I’m not one by this definition: ‘”someone who is interested in a subject (usually intellectual or complex) for its own sake”social media film

Endings and beginnings


It’s been a tough few weeks and I feel sure it’s not quite over yet but I thought it might be better to write this in the middle of it rather than after it, if you know what I mean. I’m talking about endings and beginnings – moving from one job to another.Bridges

When I was at Roffey Park on my OD practitioner programme I fell in love with the Bridges Model of change. What is it that I love? I love the humanistic approach that it takes and how it almost ignores mechanistic approaches to change, placing a greater emphasis on how people react and eventually embrace change. I have been going through a change process and I think had people focussed on Bridges it could have been a whole lot less painful!

Bridges says there are 3 phases of change:

  1. Ending, losing and letting go
  2. The neutral zone
  3. The new beginning

Firstly I think good endings are important. They represent the chance to reflect back and unpick what has happened, good and bad, but importantly to celebrate achievements, to say thanks and to celebrate the moving on. Never leave people to go without acknowledging they played a part in whatever happened and say good luck. Marking the end for me appears to be important and without that I am left with a residual unpleasant aftertaste. Did anyone know I was even there?!old job new job

The second phase, the neutral zone, can be a scary place. It’s slow, it feels almost relentless, no matter how long or short it is, too slow for those of us who like pace. It’s like a grey middle ground, I am left with feelings of being neither here, nor there, with no sense of belonging. Fortunately for me I am old enough and experienced enough to know it will pass but it doesn’t stop me getting a lump in my throat and feeling tearful – it in other words it brings out less than the best in me.

So good beginnings, how can we do this? Create positive energy and make people feel welcome. Look after them like you would want to be cared for yourself. Look after the practical things to make the transition as easy as possible, for example make sure they have somewhere to sit and can make a drink! Simple things make a difference, no detail will go unnoticed. It’s a time when simple human kindness can help someone feel at home. Other tips include clarity about what will happen next but not too much, give them time to settle and also influence how it goes – no one wants to find themselves with no room for ideas, or manoeuvrability. I think a good beginning can colour and influence what happens next, where loyalties lie and how much of the discretionary effort people might be prepared to give as time moves on.Coffee

So what have I learnt? That we should celebrate endings, that people need support in transition and that good beginnings really matter. Simple messages really – maybe that’s why we forget.

#labelsr4jamjars


DUKA few weeks ago I was very lucky to be invited to speak at the annual Diabetes UK Professional conference. I do not have any involvement in Diabetes in my professional life and as a consequence I very much felt like I was attending as a patient, who happened to be a nurse, and the conference almost felt like it had been ‘flipped’ for me; I was an outsider looking in. (Here is the link to our presentation on Social media).

I am more used to being a more integral part of a conference these days and even though on this occasion I was also a speaker it felt very different. I was there in my own time, rather than as a professional, so that was part of it, but it led me to see the conference through a new lens.

I have noticed before how people who have a long term conditions are often referred to by professionals and always had a sense of unease. For example overhearing a doctor refer to ‘the diabetics in the clinic’ makes it sound like those people are a separate species, almost a sub- species, that the professional sees them as separate and different from themselves. This has long led me to think about labelling theory and how it might apply in these contexts.

DiabetesAt the conference I yet again experienced this dissonance around the use of language. People with Diabetes referred to as ‘Diabetics’, ‘Subjects’ (of research), and cohorts. That data points were not really about people but abstract concepts that are of interest. This type of language seems to place these people outside of what everyone else ‘is’ and although labelling theories seem to have fallen out of favour, I can see how certain groups are placed out of what might be considered as ‘normal’.

I am no sociologist and I hesitate to link my observations to any theories – I know someone will pull my thinking apart – but what I do know is that there is both a good part and a negative part of being labelled in this way.

Some people wear ‘Diabetic’ as a badge of honour. I understand why this might be so. It allows people who may be similar to group positively together and own that individual and group identity. Others, like me, see Diabetes as a part of themselves, but perhaps not the most significant, and prefer to be seen as person first (who happens to have x or y condition). There are many conditions where these language labels are used: Diabetic, Epileptic, Schizophrenic, Bulimic, Anorexic…..

Those who say labels don’t matter and its just the language we use are often people who have not experienced any stigma associated with a condition. My experiences are low level but nontheless present. When I was younger I never had to explain that I have T1 Diabetes, the assumption was I was young so I would be ‘one of those diabetics who injected’. Later in my life things changed, as a rotund middle aged woman, now I have actually been told ‘You should stay thin and then you wouldn’t be a Diabetic’. Other low level stigma includes conversations like ‘You shouldn’t be eating that (cake, chocolate, etc) should you?’

I feel labels don’t help, in fact they get in the way of empathetic relationships, they create a perception of what matters to the individual based on their condition. As Brene Brown says empathy is feeling ‘with’ the person and not applying judgements. I strongly believe that empathy should be person focussed not condition focussed.  I am, however, expressing a view that may not be popular and others may challenge. In a study by Ogden and Parkes (2013) they found no difference in the beliefs of those with and without Diabetes using the word ‘Diabetic’ vs ‘Person with Diabetes’ although they do recognise that their methods may have impacted the outcome as they used a scenario based assessment to test their theory.  I could probably have told them what they would find using this method. There is more evidence in mental health that labels are perceived as unacceptable – I think there is more debate in this area and also a deeper understanding of the impact of stigma.

labelr4jamjarsI know that not everyone holds my view but I believe #labelsr4jamjars – we should always say the person first ‘Annie with Diabetes’.  A long time ago, when I was a ward sister, we had labels we applied to beds to label the person in them ‘Diabetic’ in red letters. I didn’t like it even then and I removed these from the ward and talked to staff about how I expected everyone to know who happened to have diabetes and that the labels would not be reinstated.

As an anonymous person with diabetes at the conference I did wonder how far we had moved on. Looking at it from the outside, through a new lens, it did feel like we still had a long way to go.

Thank you to Dorcas Lambert for the inspiration and courage to write this blog – its been brewing for a while – here is her blog on the same.

‘A diabetic’ versus ‘a person with diabetes’: the impact of language on beliefs about diabetes’ Ogden J, Parkes K, (2013) Eur Diabetes Nursing 2013; 10 (3): 80-85

jamjars