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

 

 

 

The significance and impact of living with fear


Thank you to Anne for again letting me take up space in her blog.

liz-cloughMy name is Liz Clough; you may recall a previous blog from me as a guest in Anne’s site in Aug 2016 called ‘Wondering if we have got it all wrong’ where I blogged about my experiences in the health system when I was diagnosed with breast cancer.

In the cancer world there has been quite a bit of publicity recently about a lady called Sophie Sabbage. Sophie got me reflecting again about my experiences and how cancer affects things.

Cancer permeates every aspect of your life but for me the fear was driven by my NHS care process; from the NHS letters dropping on the mat, to the text reminders. From saving the change from my everyday shopping in a tub for the pay and display carpark at the hospital, to writing a social engagement in my diary and noticing again a forthcoming appointment, scheduled in. From the overwhelming, trembling shakes and immediate urge to throw up in the waiting room, to staring lovingly into my families eyes and seeing the fear reflected back at me. From the doe-eyed look of sympathy and sorrow as results are shared with us, to the absence of any potential hope.

41537383 - white flower growing on crack street, soft focus, blank textSearching for glimmers of hope that are, if you can find them presented as a by-product of the real reason we are here.  I remember being told following the surgery to one breast that they could do the same to the other to re-balance the size. It didn’t have any impact at the time, I was too consumed, reeling from my (and my family’s) shock of the situation but, reflecting much later on my journals, I read into this that they must think I might live long enough to have that done.

Based on my experience and my individualised needs what would have served me better was some element of hope and a future.

Conversely I found hope and a focus on future in abundance across the range of my non NHS support. The significance and impact of living with fear is highly underestimated in our NHS system with little or nothing done to address it.

For me I believe receiving my results by post and then having a follow on Skype consultation in the comfort of my own home (clearly only possible where no physical examination required) would help to address much of the fear associated with attending clinics, sitting waiting in nervous anticipation as the clock ticks endlessly round, often past your allocated time – so much negative energy used up. Energy needs to be preserved for keeping well and enjoying life, for living well with cancer, not drained from us as part of the process.

Sophie Sabbage is so right (for me anyway) about getting sorted on the fear front. For anyone who has not read THE CANCER WHISPERER (either in the capacity of a health worker, patient or carer) I whole heartedly commend this book to you.

Thank you Sophie, I continue to work on it, for my family and I. With love Liz xxx

The Cancer Whisperer: Finding courage, direction and the unlikely gifts of cancer

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#AnneSwims and #Sod53


There is something that happens to you and the way you think when you reach middle age. I think it’s got something to do with your joints and the first few moments after getting out of your bed you feel stiff and its takes just a few minutes to limber up.

Then you start to see people you know dying. It is with a regret that you recognise you too are destined for the end game and that you have passed (and maybe wasted) more time than you have left.

That happened to me this year at 53.

Of course, I have compounding factors to consider; long term conditions that may mean I have a shorter spell here than some others and there is a realisation that this too is a done deal.

So, in the Summer, I decided it was time to act and that if I wanted to emulate Sir Muir Gray in his mission to   #Sod60 and #Sod70, there was no better time to start than now, right now, this minute.

It was with this purpose in mind I started on trying to readjust my life just a little bit. The first thing I did was to start to lose weight and I am now 1 ½ stone lighter but still with a long way to go. The second and possibly more important was to start to exercise.

That’s how the hashtag #Anneswims started. I focussed on swimming or exercising in water twice each week and used Twitter as a virtual diary that I can look back on and see how much progress I have made. Twitter tells me I have made 10 entries into my #AnneSwims diary in the last month and it has been really motivating to add each entry as I have gone along, it’s become a routine, doing a blood glucose test, taking a picture and posting. NB learning for me – I can’t do a count of how many times I have used my hashtag as I didn’t register it, I didn’t know I needed to and Twitter doesn’t keep historic data forever 😦

But 2017 is a new year and time for a new approach to #sod53. So this year I have a new way to keep motivated. I have a new jar to fill with buttons, one each time I exercise. It’s a big jar, there is plenty of space so let’s see how full I can make it. The little tin next to it is full of buttons and was one of my Grandma’s button tins (I have no idea why she had a button tin with Sloane Square on it – I don’t think she ever left Yorkshire!).

So, here’s to a new year, not with changed resolution, with an extension of an existing one – so #Sod53 and to a great active 2017.

I do have some other resolutions for 2017; the first is to work with the very lovely peeps that are Victoria Betton and Roz Davies to somehow find a way to deliver #PDDigital17 and to drive strong clinical leadership more deeply into the culture at NHS Digital. These things will be fun and I am very much looking forward to 2017.

Happy New Year everyone – I hope you achieve your ambitions while staying happy and well.

PS Thanks to Sir Muir Gray for the inspiration and I hope he forgives me for #Sod53

Postscript 3rd Jan:

The first button is in the jar and look at my new button tin thanks to Auntie June

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What does ‘frugal’ mean to you?


img_6503For me ‘frugal’ has a very personal meaning. I was brought up in a frugal household; rarely did we throw anything away. Recycling was an art; buttons cut off items of clothes that were worn out, then the cloth used for clippy rugs. Shirt collars and cuffs turned and boots and shoes re-heeled. Post war habits lived through my parents and grandparents.

Some of those habits have persisted into my adult life and my husband has much stronger frugal habits than I.  I delight in nice jam jars that I can reuse for jam and marmalade and I increasingly recycle ribbon from parcels and paper, if I consider it special. I find myself looking at buttons as having potential.  I sometimes reflect that I am turning into my Mum or Grandma!

My husband has a garage full of ‘stuff’. The pleasure he gets when we have a practical problem to solve and he says ‘ah, I have just the thing for that!’ and off he goes to return with a surprising solution, usually something I would have thrown away, something that we can repurpose.

So, what is frugal innovation?

‘Through minimising the use of resources in development, production and delivery, or by leveraging them in new ways, frugal innovation results in dramatically lower-cost products and services. Successful frugal innovations are not only low cost, but outperform the alternative, and can be made available at large scale. Often, but not always, frugal innovations have an explicitly social mission.’

Nesta 2016: See more here

So some of the aims of frugal innovation are the same as my parents or my husband; that is to use resources wisely and in unexpected ways for solutions that work well. Perhaps it is the very scarcity of resources that makes us more creative and focus on something unexpected that sorts out a problem.

I am really looking forward to the debate tomorrow for #PDDigital16 – this is the motion:

This house believes frugal innovation has the potential to create better solutions to citizen challenges in health and care than traditionally designed digital technologies

The debate will be streamed live so why not listen in to see if you can learn more about frugal innovation (follow #PDDigital16 for more information) and meanwhile here is a short video from RSA with Charles Leadbeater to whet your appetite!  How can we use the limitless opportunity we have to connect, to create solutions with scarce resources, for social purpose?

 

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Apps – hitting the target but missing the point? for #PDDigital16


52287225 - concept for mobile apps, flat design vector illustration.I had a developer say to me recently ‘It’s OK, we do lots of user research where we test our products and how well they work!’ – he was clearly proud of his product and through this research thought they were very well connected to their users. Clearly their plan couldn’t fail? Or could it?

I was less impressed. I was unclear if they understood what the issue was that they were trying to resolve and had made a huge leap to creating a solution that they were then going on to test. Their intentions were honest and good but I wonder if we can do better if we understand what it is products need to ‘do’ to help in the health system.

I also recently read this blog from Mike Fritz at Userzoom that eloquently describes the issue; fundamentally you can create a highly usable (probably very beautiful) application but it will possibly never get used, unless you understand utility.

41935551 - road sign to diabetes managementHaving Type 1 diabetes means I understand utility very well. There are hundreds of digital tools/apps available to me, a simple search in the apple app store shows the variety; carbohydrate counters, games, coaching, glucose monitoring. But the truth is, I only use one consistently and that’s an App called Carbs and Cals. It has a clear utility for me; it easily helps me to identify the carbohydrate content of food just by looking at things – no scales, just looking.

I think I am a reasonably activated patient, so why is it that I only use one app and does that make me different to everyone else? I think that the research is starting to show that most of us only use 5 apps that are not native to our device and if you think about your own use (Twitter, Instagram, Facebook, Whatsapp) you are likely not to have too much room in your smartphone life for much more than a very special few apps. Despite this the health system continues to see Apps as a potential solution to the challenges faced by health and care systems.

Potentially it’s a classic case of hitting the target but missing the point.

So how could we reverse this? How can we help to make sure technology offers valid usable utility solutions? I believe that utility is the key not beauty; we will tolerate poorer user interfaces to achieve beneficial utility. It’s about what it does to support and help people not whether it was merely a great idea in the mind of someone or has a very smart user interface. The best example for me of hitting the target but missing the point are Apps that ‘help’ people with Diabetes to monitor their blood glucose but require extra entry of information into a separate and standalone app… in the days of interoperable devices why would you bother? No one I know likes them or uses them in a sustained way. Their utility does not stack up.

So, if we are to capitalise on technology how might we do it, how might we find the pieces of utility that really help?

app-developmentThe answer for me lies in where the ideas and solutions arise. If we look to citizens and patients who have real skin in the game they will know where technology has real utility. From this, great designers and developers can collaborate with citizens and patients to create high utility AND high usability solutions. My view is that this type of ideas generation and co-production has the potential to create innovative scalable solutions. But only if we stop thinking the system knows best and properly tap into the ideas and creative thinking that sits behind People Drive Digital. Co-production in the digital development space could have real potential to help but it requires more working together to identify areas of potential utility and then combine these with fantastic design and development. We have the skills and talent – we just need more conversations.

Follow #PDDigital16 for more conversations.

More information here

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Empathy not sympathy #Morethanmeetstheeye


henryI don’t like a fuss about anything much.  I dislike being the centre of attention at birthdays and parties; its not that I don’t like them, more I like to be part of a bigger thing not at the centre of something.  But when it comes to my Diabetes I had an insight this week that my inherited stoic approach to my personal health might not be for the best.

There is no doubt in my mind Diabetes is tricky every single day.  I can’t do many things without thinking first: a latte with a friend (how much milk and how much carbohydrate), a long walk (where are those pesky glucose tablets and where shall I carry them) a night away (do I really need to take all this stuff?), and that’s just the tip of the iceberg.

Through personal preference I don’t talk about this all very much.  I have to do it, not you, and why would you want the boring details?

But of course this behaviour masks what is going on and renders my Diabetes, a big part of my way of life, invisible.

Does that matter?  Sometimes it does, sometimes, knowing these things about me is helpful, it might explain my tubing poking out of the top of my tee-shirt or my seemingly sudden lack of focus, or my trying to cram biscuits in to my mouth.  Not very glamorous is it really?

So what is it that I feel inhibits me?  Is it about me or is it about the environment in which we live?  Sadly, its about both.  I am not predisposed to share and people are interested in differences but not always for the right reasons.  Responses like: ‘Should you be swimming?’, ‘Shouldn’t you be at the Medical Aquafit not the normal one?’, ‘Should you be eating that?’ and ‘Did you really have a baby?’ are irritating narratives in my life.

My contact with more people with Type 1 via social media has encouraged me to be more open but I still do so with a feeling of unease.

Jelly babiesSo why do I think it matters?  I think it matters because it is really hard. Much as I want to be seen as a strong woman who copes with really well with her life, sometimes, sometimes, it stinks.  And if I don’t tell you, how will you know?  Because when life stinks its always helpful to have the kindness of people.  So if you know someone like me, empathy but not sympathy is the best answer.  I don’t want sympathy but I would like people to know how hard it is!  This week has been a hard week.  High readings that make you feel frankly shocking for no perceivable reason other than that it’s Diabetes.

So don’t judge me if you see me in the supermarket cramming food that hasn’t been paid for yet into my mouth.  The choices are stark…. eat or pass out on the floor!

People with Diabetes are not alone in having an invisible disability.  Watch this great video by Pam Relph for some insight into invisible disability and if you are on Twitter have a look at #morethanmeetstheeye.  Its an old hashtag but worth a look through.

PS Why do I still feel whingy writing this post?  I hate feeling whingy!

 

#FabDigital


53123679 - business people meeting corporate digital device connection concept

Each of us has the power to make change happen…. or at least that’s how we look at it.  Small acts together can make big changes and if we volunteer to do them they have a great sticking power.

So what could we change? We embrace digital in most aspects of our lives. We talk to our family and friends, shop, arrange our travel, find our recipes for meal planning and order taxis.  How do you feel when your battery runs down on your phone? Disconnected? Unable to do stuff ?  Frustrated?  The tools we use to live our modern lives are woven through them like invisible strands.

Yet in healthcare it often feels like a history tour; we are transported back in time. The Nuffield Trust report published earlier this year tells us on average NHS organisations are a decade behind.  Think of all the opportunity we are missing to deliver better care!

It’s easy to overlook existing digital tools as part of new ways of doing things in health and care; maybe because in everyday life for many of us it is so invisible and integrated, unless it goes wrong we pay it little attention – so how do we change that and make it a more obvious part of the future? I don’t believe it’s about politicians or indeed policy it’s about people and that’s you and me.

How about if everyone made a pledge to do something ‘digital’ would that be a start? Just think what might happen if we then also encouraged our colleagues and family and friends to do the same.  The leadership of change often takes a group of focused people who create a tipping point that starts a process of change.  It often takes ‘doing’ rather than ‘talking’ so perhaps we could start some of the ‘doing’?

lightbulbSimple acts such as all of us committing to learn a new digital skill, for example, tackling that tricky process online that you have been avoiding, or learning how to order your own repeat prescriptions online.  You could also do something digital to improve your own health such as download a new app to check your weight, ask for access to your GP record or use the NHS Choices Couch to 5K App – or persuade your partner to do the same.  Or it could be helping your parents to work out how to get access to their health record with their GP.  If you work in health, find out what is happening around digital and commit to help and support the substantial changes we need to make. Go and meet the people who work in your information department or the technology team as part of a #RCT – ask them what they do and how they can help you to deliver care. Look at how you can use the technology you already have to contribute to doing things differently – perhaps show patients resources online that they can look at in their own time or link them to online peer networks. What would you expect if you were a patient in 2016? If you don’t work in health but you are a patient, carer or service user ask the people who help you how digital might be able to help you….

In the NHS we depend on incredible people and there are 1.2 million of us. Just imagine the impact we could make with a million digital pledges.  The fact is the staff in the NHS are the best resource we have; if we all mobilised behind the digital age it would make a real difference.

If you think this is useless/pointless have a look and be inspired by the work of the Tinder Foundation and some of the digital heros in the video:

fab-change-dayIf you want to make a digital pledge tell us about it on Twitter using #FabDigital and register your pledge on the FAB Change Day App:

A modern NHS should be digital – what part can you play?

Let us know what you do and what you think!

Deborah El-Sayed @debselsayed

Anne Cooper @anniecoops

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.

Margaret Mead