Noise


I am often so very naive.  I know I am supposed to be an adult, who even has some semblance of a brain, but I am a marketer’s dream.

notificationsI have never considered social media noise before; never thought about how all the notifications were competing for my attention and how often I had got in to checking my phone.  It’s worse if I’m not focussed, so I can go all day at work and never look but one hint of a moment of boredom or procrastination and I’m there.  Cats and kittens always work…..

It was a presentation by Hany Rizk @Rizkhany last week that brought this in to sharp focus by showing this video.  I recommend that you watch it through to the end:

Also look at the website Time Well Spent

It got me thinking about how I manage my personal time and how I need to find some quieter spaces.  Hany managed to persuade me that I need to use settings better to manage my notifications and even switch off my phone (gulp).  I know, most of you are thinking; ‘where has she been????’

noiseI work in an environment where digital tools are seen as part of the future in the way we support health and well-being and I started to wonder how health related digital tools could compete with the existing noise.  How can we build tools that use notifications etc in a positive way, a way that enhances health related behaviours?  How can we compete with the noise of giants like Facebook and Instagram?  We need to think like Marketers!

If we are to build new digital tools that are successful and fit in with people’s lives we need to consider the noise that we create and how its positioned alongside the existing cacophony of social media.

I wonder who is thinking about that as they design new health tools.  I hope some clever people are!

52287225 - concept for mobile apps, flat design vector illustration.

#LanguageMatters


By Rosie Walker, Successful Diabetes and Anne.

DiabetesWe have both attended diabetes professional conferences and reflected on the language used about diabetes, for example, self-care is often labelled with words like ‘compliance’, patients are ‘suffering from diabetes’ and ‘poor’ is contrasted with ‘good’ control. These words carry a degree of stigma, or at the very least affect how people interact with those of us who have diabetes.   I have also blogged previously about the use of labels and stigma (check out #LabelsR4JamJars).

In other countries, most notably Australia, there has been a push to change the way language is used and Diabetes Australia have led the way in trying to eradicate words that are unhelpful when supporting people to live with diabetes and suggesting others. Their position statement ‘A new language for diabetes’ was drawn up by an eminent working group including clinicians, psychologists and of course, people living with diabetes. It is the basis for many events and presentations which quite literally ‘spread the word’ about language awareness and use in diabetes care. One such presentation was recently at the American Diabetes Association 2017 meeting in San Diego, where it was proposed that the USA might develop its own statement.

Inspired by attending that workshop and/or hearing about it through Australian diabetes advocate and blogger, Renza Scibilia, ourselves and Dr Partha Kar, Associate National Clinical Director for Diabetes in England, have decided to do something about this in the UK; working with people with diabetes, and also professionals and voluntary sector organisations, to create a UK statement that raises awareness of and promotes the best use of language in relation to diabetes and people living with it.

To start us off, we would like to hear your views:

What words or phrases do you think should be discouraged from use in referring to people living with diabetes, the management of their condition and/or diabetes care generally? Perhaps you could give us a list of your ‘top 5’ recommendations with alternatives?

To help you get started here is the Australian position statement

Please post your comments in the comments box below (if you would like to remain anonymous please say so in your comment and I will not post it openly on this site but will add your views to the debate).  You can also tweet us @anniecoops @successdiabetes using #Diabeteswords or #languagematters, by the end of July 2017.

You can also comment on other people’s ideas if you wish (politely of course!).

time to listenWe will be putting all the ideas together and will take all comments into account when drafting the statement.  The statement will be developed by a multi-disciplinary group but your voices can be heard.

Please contribute and also share this invitation as widely as you can – we would like to get the views of as many people as possible!

We will also be having a tweet chat on July 25th in the evening with @WeNurses using #WeMDT.  That should be a lively event so please put a place-holder in your diary!

Thank you!
Anne Cooper @anniecoops and Rosie Walker @successdiabetes

anniecoops diabetes

Fantasy Party Planning


Abracadabra

Abracadabra – I magic my own party!

I met some wonderful people this week. On weeks like this my job rocks; the chance to meet some really fantastic people who enrich my thinking and make life fun.

 

On the long journey home I was thinking about what it would be like if I could just put some of them in a room together what magic might happen! It was like one of those personal ‘dead or alive’ dinner party discussions – who would you select? But more importantly what could we achieve?

So, this blog is going to list some people who I would love to put in a room together to party! So how did I select my list? Each person has a set of unique super powers. Every single one of them I would think having coffee with them was a highlight of a day and finally I would just love to see what they would do if they were given a collective challenge.

The list order is alphabetically deliberately; there is no priority order and I know I will have missed some people, forgive me. Lists are written at a moment in time.

Here are where my party initiations are headed:

envelopeDeborah El-Sayed @Debselsayedd – Debs is someone to dream with. When we discuss ideas and make plans our conversations go to the most unexpected places. She’s is fun too and her parties are always the best ones, creative and expansive, in exactly the same way she thinks. She also makes things happen.

Emma Bearman @emmambearman – Emma is wonderful. I have never met anyone like her before. She is like a warrior, someone who gives part of her soul for her work on play in Leeds. Her passion is practically palpable and she would keep the party going with her energy (and play).

Hany Rizk @RizkHany – I went to a UX conference this week and his presentation blew me away. Hany is selected for his ability to make me think differently. I suspect he is also an ace UX designer. By the way he is also a super cool and from the Lebanon*. I think he brings values too.

Heather Henry @heatherhenry4 – this nurse is a super hero, who has taught me so much about asset based community development but she is also so determined and focussed. I use the story of Salford Dads and pub nursing as ways to describe an alternative way. Heather rocks.

Jenni Middleton @nursingtimesed – all parties need someone who can communicate with insight, wisdom, style and flair and that is what Jenni can do. Unusual for me to chose a journalist but Jenni is a real pro and she also has great style. All parties need someone with style!

Lance Gardner @LanceAACltd – selected for his creativity and his clear focus and insights into doing the right thing, the right way. No half-way measures for Lance, if it’s not done right he doesn’t do it. He’s also a trail blazer. Lance has a non-flashy way of working that I really admire.

Linda Whalley – Linda is a colleague. She is a great thinker and worth having alongside you but she is also one of the wittiest people ever. She has a way of seeing situations and people that is unique, wise and funny.

Lindsey Fallow @betabetic – what a treat Lindsey is to know. I don’t know anyone else quite like her. She is clever, wise, unafraid and has a groundedness about her that makes me feel safe. I don’t know anyone who has so many life challenges who remains so positive and un-beaten. She is just incredible.

Mark Davies @markpricedavies – ah Dr Mark. One of my favorite doctors. Mark is fun to be with but he is also a good person to think with, he will bring new ideas that others haven’t thought of. He also has a fearlessness about his persona, a non-traditionalist.

Mary Dixon-Woods @marydixonwoods – I’ve never met Mary (I would love too) but every party needs a professor and researcher and Mary is the one I admire most. She, too, is someone who is pushing boundaries and looking at things in new ways. I used one of her emergent research approaches in my MSc and my tutor thought I was being a bit alternative – which I consider to be an admirable thing! I will maybe meet her in real life one day.

Maxine Craig @maxine_craig – Maxine understands people like no one else I know. A deep meaningful insight into people and organisations wrapped in a beautiful soul. She is also so restful to spend time with! She will keep the party grounded and well.

Pete Thomond @petethomond – Pete is very special. I love the way he thinks – there are no blocks and barriers in Pete’s mind and his conversations reflect that. I guarantee at the party he would be an ideas generator, someone who asked interesting questions and could see the connections between ideas and concepts.

Rachael Dunscombe @UKpenguin – Rachael is in theory an IT person but when I look and see her that’s not what I see! I see someone who has so much insight into a wide range of things, not for her just pure IT but real breadth and depth! A linker of things…. Someone who I want to meet more in future.

Rob Webster @NHS_robW – Rob for me represents values. He is clear about his and would make certain we were clear about ours. He is also wise; his life and work have made him so.

Roz Davies @roz_davies – Roz is a very beautiful person. I don’t know anyone else who so consistently lives the values they express. She is someone who it’s cool to hang out with to explore values and find deeper meaning. Never under estimate her!

Simon Norris @simon_Norris – Simon is a creative if ever I knew one. His optimism is what strikes me though and his values. You would be surprised about where conversations with Simon go. Another value driven person. I love great UX designers too, they are the ones that bring IT alive for people.

Steve Wheeler @timbuckteeth – I don’t know anyone else like Steve. An academic but he is uber cool and another thinker. He is also a rebel I think. I admire rebels with values. They make me feel braver.

Susan Hamer @dollyblue3 – selected for her determination but also her incisive brain. She knows the right thing to do and does it regardless of what people think. She can be out-spoken but you will need to be at this particular party! She will help you to take an idea apart and work out what to do and bring evidence into play.

Teri Porritt @gbtpo – Teri is unstoppable. She is values driven and has so many facets to her professional persona. Peel away the layers and you will find many beautiful things that she brings to the party. Energy is the most obvious one, but you will also find a photographer inside!

Victoria Betton @victoriabetton – Victoria is another creative soul but one who can do serious business. She takes ideas and just makes them happen, like magic. Another values driven person who takes risks and walks the walk.

So how will this party go? I have no idea! But it won’t be boring that’s for sure! What ideas would we create and solutions could we find? What would we make happen?

I’ve no idea but I know that each one of these people brings gifts to my fantasy party. In writing my list I realised that there are some common themes: values, passion and the ability to think with me, play out through thinking – thought expanders.

I am grateful that all of these people have played some sort of role in my life from making me think differently to making me laugh out loud! Now let’s get on with this party!

Anne

47426673 - superhero kid at home. christmas holiday concept

Post Script: Writing this I kept on thinking of other people I couldn’t miss off (I am sorry if you are one! You will all know who you are I hope) and it was a great exercise in making me feel incredibly lucky.

*Correction:  I had originally thought Hany was from Germany but he is actually from the Lebanon – sorry Hany!

 

 

 

Ageing, marginal gains and #BigitupforOTs


IMG_7292I suspect that part of the problem about aging is that it’s an insidious process; it’s not like you wake up one day and suddenly you are ‘old’. It’s a gradual process noticeable by a series of small incremental changes; stiffness when you get out of bed on a morning that wasn’t present before, a memory that just isn’t as good at recall as it used to be and a fondness for reminiscence. I also know that for some older member of my family time starts to get stamped by loss; funerals become less unusual and more routine, if you can ever say a funeral is routine. What I mean is they appear more frequently in your diary as you lose family and friends.

For me it is important that I stay as independent as I can. I’m trying to exercise more, eat well and lose some weight. But there is likely to be a time when I need to take more steps to maintain my independence.

Julopi

Gill on her Jalopy

My Mother-in-law, Gill, is one of my role models. At 85 she is still independent and despite increasing problems with her mobility and the occasional fall she is adamant she will do what she can to cope. She has had bi-lateral hip and knee replacements and now her ankles are the problem and she can’t face 3 months in plaster that a fusion would mean.  She also enjoys life most of the time and has a sense of humour.

 

So that’s why I encouraged her to have an Occupational Therapy (OT) Assessment. It seemed to me that OT’s are often brought into care far too late and after this assessment I am convinced I am right.

I asked Gill today what it was she wanted to achieve and she told me she didn’t want to fall and that she wanted to carry on doing things she liked to do at home, such as cooking meals for family and a bit of gardening. She is lucky; she already has help with cleaning but maintaining independence is more than existing, it’s also continuing to do things you enjoy, while staying safe.

 

IMG_7295So, what did the OT assessment show us?

It’s about marginal gains. There were no big shock recommendations just a reasonable list of things that collectively will improve Gill’s living experience; some handrails positioned correctly in the shower, removing all the loose rungs, a ‘perch stool’ in the kitchen, a small walker so she can carry things without risk of falling and some exercise classes in the local pool. She is going to try them all. A list of marginal gains that I hope will help her to reduce her risk of falling and feel safe.

Sadly we had to have a private assessment; this means other people who can’t afford this will miss out.  Keeping people safe and well in their own homes should be a priority. I luckily found Lucy Leonard on Twitter (@lucyOTL) and she was fabulous. Gill loved her and the fact that she did a full assessment. She respected her professionalism and so do I.

So, aim for marginal gains and big it up for OT’s. If you have an elderly relative and can possible involve an OT, like Lucy, I whole heartedly recommend it.

#BigupOTs

IMG_7294

Jazzy, Gill’s companion

Post script blog: ageing well (Moves like Jagger)


Readers of my blog will know that a few days ago I posted about some of my personal reflections relating to ageing well. My reflections came from experiences that were not particularly positive.  This blog is to provide a counter-balance!

Last night I had the great pleasure to go with a group of women to a Michael Jackson tribute ‘thingy’.  We were in a restaurant so had food, some wine and then we sang our hearts out to songs most of us knew, because we were around when they were new.

But in addition to those of us who were gently starting to live our middle age (when does middle age actually start anyway?) I had the pleasure of the company of two wonderful women who provide a great role model for me.  Eileen and Pat are 86 and 85 years old respectively.  They were singing along with the rest of us until past 11 pm and much to my delight got up to dance with me.  And I mean dance!

Eileen in particular really likes to dance and I don’t mean tea dances either – I mean DANCE!  She explained that she had been dancing since she was 14 years old and told me she would go anywhere to dance; town halls, salvation army halls, church halls and she used to love to jive.  I loved dancing with her!  We danced to ‘Moves like Jagger’ and she can!

Eileen and Pat are sisters and whilst both of them have had sadness in their lives and I am sure like all of us have days where they are not so good they kept pace with all of us and I am sure enjoyed themselves.

My impression?  They don’t think they are old.  They see dancing now in the same way that they saw dancing then.  I was chuffed when Pat told me I was ‘quite trendy, wasn’t I?’  High praise indeed.

So, please take a look at these lovely pictures and I wish you the same joy and happiness I saw last night when we all sang together.

 

On getting older: my top tips


HopeA year ago, almost to the day, our 85 year old aunt lost both her two much loved children; a son of 53 and a daughter of 61.  They died within 36 hours of each other.  Aunty J was already a widow.  Her life, in her words, is now without purpose or meaning despite having one very close friend. She says she has aged 10 years in the last year and I don’t disagree.

Since this life changing event Aunty J has been severely depressed but also very lonely.  She seems unable to spend any time on her own at home.  It’s been hard to keep her occupied and have any sense of purpose.  I have become her main carer.

But this blog isn’t really about Aunty J; it’s about the things I have learnt that I think I need to apply to my life.  These are some of the things I have learnt:

  1. Work as long as you can; this doesn’t necessarily mean do what you do now but find something purposeful to do and do it for as long as you can. It could be paid work but equally it could be volunteering.
  2. Keep as wide a circle of friends as possible, don’t rely on one close friendship.
  3. Have lots of hobbies but critically things you do with other people but also things that you can find joy in alone, at home.
  4. Always be flexible and don’t fall into the trap of having a rigid routine where you do the same thing at the same time every day.
  5. Read widely and extensively.
  6. Keep in touch with church (or whatever this means for you) as there are always people there.
  7. Eat well, eat a variety of food and enjoy different things (see also link to 4 above).
  8. Embrace change and try new things in as many aspects of your life as you can.
  9. Always wear clothes that are stylish and represent who you are – ignore fashion if it pleases you.
  10. Grow things and enjoy the cycle of nature.
  11. Move about – keep active – walk every day.
  12. Learn how to use public transport –  don’t get trapped at home by an inability to drive.
  13. Cats make good companions and looking after them gives you purpose.
  14. Hug people – physical human contact is very important

Leeds-Portrait-PhotographyPlease if you have any tips do share by leaving a comment below:

I know not everyone will be able to do these things but nearly everyone will be able to do some.  Aunty J, as you may have guessed, hasn’t, and her life at 85 is less for it but we are making progress in building some sort of new life for her.

In pursuit of Resilience


It may be that in writing this blog I am cursing myself; I have fingers, toes and legs crossed and am holding on to a piece of good solid wood, all for luck and against sod’s law.  I hope nothing happens to derail me because I wrote this down!

I have spoken at events recently about ‘resilience’ and I have been pondering what it means.  If resilience is important for people with long term conditions to have full lives, where they bounce back from inevitable setbacks, how can we help people to build resilience? or do some people just have it and others not?

One of the meanings of resilience is the ability of something to spring back into its original shape, an elasticity that helps things to retain their form. But I think this is unhelpful when thinking about health or indeed most aspects of life; life events, no matter how positive or negative they are, shape us as people and for many of us leave indelible marks. I think the definition that includes the word ‘adjustment’ is more helpful; after things happen to us, it is our ability to adjust and move on that makes us resilient.

Remember Weebles?  Wobbling but not falling down? See also this brilliant blog from @betabetic about Resilience, Weebles and personal stones.

So, am I a resilient character? I think so. Having reflected, I think it is a learnt behaviour. I was a child of a broken home, although I still had a very happy childhood. The broken home part led to me taking up responsibilities probably beyond what you would expect of a 15 year old; I effectively ran the home and ended up moving out into rented accommodation at 17. I didn’t go on to do further study at 16, leaving school to earn money so I could completely support myself. My reflection is that my learnt behaviour, to be independent and self-sufficient, is an attitude that has continued into by Diabetes life. I have had a few curved balls thrown at me and I doubt that I have reached the point where no more can be lobbed, but I hope my resilience and ability to cope continue (keep those fingers crossed for me).

I am also as stoic as they come, even from Yorkshire. Stoicism is also an interesting word as it relates to endurance and acceptance, without complaint or emotion. I am not saying I don’t complain or get emotional, more that I seem to have a deep acceptance of life events. This leads me to a place where I can be more resilient; I adjust and move on.

So, has Diabetes caused me to face events and situations that require me to be able to adjust but keep focussed on positives and move on? Absolutely, my attitude continues to be that there are many worse things I could have, although it’s tricky and can be rubbish. I am alive and have a good life; I consider myself to be lucky.

So how can we help people to become resilient?

canHow we react when things happen for me is key. I once had my driving licence revoked due to my diabetes. It was a mistake and I did regain it but not for many, many weeks. I was also quite heavily pregnant and still working at a hospital 15 miles away from home. My attitude? Public transport is what I need to do and I quickly learnt how to manage and still get to work. The buses were OK and I learnt to read and gaze at the views as we went on the long tortuous journeys (bus routes are rarely direct). I can still get myself around on public transport unlike my 85-year-old aunt who has never been on a service bus and now can’t drive. I feel sure I would have my walking stick and umbrella and be waiting for the free Sainsbury’s bus – I developed a skill! She choses not to learn to use the buses and complains that she can’t get out and about like she could. Choosing public transport over going off sick or leaving work maybe isn’t a big deal but it demonstrates my attitude.

Electing to react in a positive way to an event is for me the crucial factor. I am not saying I don’t gnash my teeth and wail but I soon move on actively seeking a way of managing past the problem. I can be stroppy, though, as I hate people feeling sorry for me so people saying how terrible it is can sometimes get short sharp words (sorry!).

So we can actively encourage people to focus on finding a way forward. For me my resilience is about taking a very active stance – if something around my Diabetes management is causing real difficulties how can I deal with it?

Can I learn more about it? Can I change my behaviour or how do I get to a better place? How can I find a way forward?

Having an effective network of people who can help me solve problems is also important, despite my independence. I like to talk problems through and it helps if its people who understand. This is how the Diabetes Online Community (#DOC) is helpful to me, a small network of people where I have reasonably strong ties – comrades in arms!  I can seek advice and support from these lovely people in addition to my own family and friends.

Creating peer relationships for people with LTCs might help some people, whether this be in person or online.

47463096 - red hair one month old little kitten in the boxI like having things to look forward to and I feel this increases my resilience; setting goals, however small, helps me get past setbacks and put bad things that happen into an appropriate place in my life. I am a reasonably driven person and I always like to have something else in my life that can counter balance my health. Right now, for example, we are planning my husband’s 60th birthday party, we are determined to make it special and memorable and are having great fun doing so! It doesn’t have to be big grand goals that distract you (there are always cats and kittens).

So how can we help people to set goals and take positive action. What one thing each day will help them feel that they are in control?

I recently spoke to a group of Paediatricians who care for children with Diabetes and this made me reflect.  It seems to me that we might want to protect young people and try to shield them from life events that challenge them but I think it is vital that they find out how they will cope and build and strengthen their personal resilience. Wrapping children in cotton wool when they have to face a lifetime of coping seems to me to be wrong.

There are of course other strategies I could use. I am not particularly good at looking after myself. I work too hard, rarely stopping and I’m not very good at relaxing. I think I need to learn these skills as I get older. I have tried mindfulness but I seem to be too busy to fit it in!!  I need to practice more!

I found this information from the American Psychological Association to be very helpful when reflecting on my own resilience.

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This picture was taken around the time I was diagnosed as having T1 Diabetes