Strengths, imposter syndrone, uncomfortable but cathartic

I was privileged to be interviewed by Ian Pettigrew for his strength based podcast.

As I listened to it I wonder if I share too much but what it is, is authentic.

I post here as this is a place of record, for me. Of documenting thoughts and events.

Here it is

Speaking the Right Language – a Triple Aim for Health Informatics

technology future

During some of the most exciting (so far 😉) times in my career I have been working on doing new things, creating new solutions and developing new approaches – setting up a new complaints service, being part of a team developing a new NHS Direct site and developing the national Summary Care Record.  I might reflect that some of these were not as successful as I might have wanted, but they were all exciting projects to be part of.  What drove me, in all those projects, was the opportunity to try to make something better, to deliver better care, to find new ways to help people get information, to make information more accessible, so that it improved outcomes – laudable goals.

At the time of these projects we didn’t really talk about digital, nor digital transformation.  We were just focussed on trying to solve a problem and technology happened to be part of solution.  More recently there seems to be a whole new language developing focusing on digital transformation – for me this is missing the point.

I have long thought that the annex that is the informatics department would do well to move nearer to the point of care and be part of it, rather than a separate, specialist environment.  Instead the informatics world has developed its own language which is impenetrable unless you have a qualification in computer science or similar.  Don’t get me wrong, I don’t want to dumb down health informatics, but I think those specialists would do well to get closer to the language of health care delivery.

What could ‘digital transformation’ be called?

The specialists in informatics might do well to use the language of safety; patient safety   is the avoidance of unintended or unexpected harm to people during the provision of health care. Care providers would recognise this language and understand the intent.  It is generally what informatics specialists are aiming at too.

coding code program compute coder develop developer development

For me the language of improvement is a way of connecting to health and care staff who are not specialists.  Improving quality is now well recognised as key for high performing NHS organisations.

If Digital Transformation was described as projects that aimed to improve quality and the language of quality improvements used, I feel sure it would resonate more clearly with staff and service users.

As someone who likes frameworks, I developed and used a variation of the IHI Triple Aim when I thought about what we were trying to achieve, in any project.

Digital projects should always be focused on:

  • improving outcomes,

  • creating efficiencies, and;

  • improving the experience of both staff and/or service users.

Projects should be able to show how they improved all the areas of my adapted triple aim.

We need to stop talking about digital transformation as an thing in its own right and use language that resonates with staff who are working at the point of care.  I recommend the language and aims of quality or service improvement.

I know that’s what we all want, but we need to get our lexicon right.  Surely we all just want to make things better?


Make things better


A tiny flickering light

HopeIt has taken me a long while to pluck up the courage to write this blog.  It’s sensitive, for lots of reasons.  It’s about my relationship with a very close friend who happens to have Bipolar disorder.

We have been friends for decades; we have many shared memories, most of them great or good.  My friend has a great sense of humour and can make me laugh – proper belly laughs, where I can hardly breathe.  We have been on holiday together and once shared a strong social network.  Our families were close too.  But we  haven’t laughed like this in a long time.

Bipolar had already thrown this family some challenges and we have had experiences of both mania and severe depression.

Life can be cruel; a bereavement took my friend into a manic phase.  Unlike in the past, they had no one to help to counter-balance some of their more destructive behaviours.  At the start of this episode I tried to help but there was no talking to them.  They could be mean and did some not so nice things to other friends.  A couple of us tried to get mental health services involved but my friend was having none of it and gradually I came to realise that I needed to back off, that nothing I could do was going to change what was happening.

A couple of years went by.  I stayed in touch with my friend’s son and offered him support where I could.  My friend systematically went about destroying much of their social network.  They spent lots of time with people who perhaps were less good for them.  Eventually my friend’s son got in touch to ask if I would go see my friend, as things had changed.

My friend has long swings of mood, lasting months, and by now was not taking any medication and was on downward path towards a deep depression.  They had moved into a new house and although they had been there for months it looked like they had moved in the day before, with packing boxes everywhere and little that was recognisable as their home.  They had lost lots of weight and were not eating properly.

Loneliness empty benchWhat has followed is the reason for writing this blog:  I have been visiting every week now for almost two years.  It feels relentless.  There is no longer any laughter and the visits can be quite functional where I do a small amount of cleaning or changing the bed.  There is no joy in this process at all.  It is devoid of most of the things that made this a great relationship.  We have had episodes where my friend has told lies to avoid seeing me, where they have sat for long periods and barely spoke.  The house still looks barely inhabited and my friend is eating a poor diet and has questionable personal hygiene.

This is not about blame – I know my friend is has a complex mental health condition.  Nor is it about looking for plaudits.  But it is joyless being a friend in these circumstances.  We discovered they hadn’t been taking their medicines recently and we have had to step up the care, working with the mental health team.  It’s hard feeling the need to ask your friend if they feel like they might take their own life.  It’s a gruelling endurance test of a friendship.

The feeling of hopelessness and lack of joy in what had been a great friendship is difficult and I understand why many people walk away.  There is almost a sense of bereavement on my part – I had lost a friend who was important to me. There doesn’t seem to be much online about this, about the challenge of friendship in these types of circumstances but I am sure many people will recognise my descriptions.

So, what to do about this? The most important thing is to make sure that you look after yourself.  I am lucky; I have a loving partner, a fulfilling life and cats and hens – they help me to stay resilient.  I do what I can, but I don’t feel guilty because I can’t do more.  Friends and family of people with long term mental health problems need to understand it’s a marathon not a sprint and be prepared for a difficult journey on some occasions.

bright light in the end of tunnelBut! There is a tiny light at the end of the tunnel; I can see it flickering.  Its not very strong yet but I feel optimistic. It’s still hard though, as there are still down days, and there is still a long way to go.  I sense we are on the upward curve and am prepared for all the things that it will mean.

If you are close to someone like this, I send you warm wishes of love and strength.  It’s a long and arduous journey, as you know, but love and compassion must be at the heart of it.  Stay well and look after yourself, it can be a long road.

I say to my friend that we will laugh again soon and I hope it’s the sort of laughter where I can barely breathe and where I snort my cup of tea.  That day will be here soon, I hope.

If this blog affects you personally, there are resources here and here that may help.

In praise of stridency

Girl with microphoneI am, apparently, known for my directness.  I would like to think that I was just a straightforward northern lass and, as they say where I come from, ‘Shy bairns get nowt’ (for the meaning click here , I guess you are not from the north east of England 😉 ). Other ways people describe me; ‘calls a spade, a spade’.  So far so good, I guess that means that people are likely to trust where I am coming from.  I certainly try to do my best to speak truths and where I can ‘speak truth to power’.

But I do wonder whether that means you have nowhere to go.  What I mean is, is it like swearing all the time, you know where the shock value wears off?  I have been shouting out as loudly and clearly as I can for more than a decade about several issues relating to my work and other parts of my life.  For example, speaking up to senior nurses about the inexorable march of technology and its impact on nursing.  I don’t think I have ever been slow to speak out and often publicly too.  Yet I don’t always feel people are listening.

Sometimes it works, and people listen.  If you can match your voice to their ear, if you can get them to listen, really listen, to what you have to say, sometimes, sometimes you can change things.

38530579 - gestures in a contemporary version of butoh danceBut what happens when it doesn’t?  You know what I mean, when you have said it so many times and in so many different ways that you feel like a broken record.  You have reframed it as many ways as your imagination will allow you to.  When you have written about it, performed it, sung it and practically modern danced it….. What do you do? Do you accept you must be wrong and move on?

I call this ‘Giving Up’ and I am not sure its part of my character.  I must be one of those irritating people who continues with the same theme over and over.

I found myself shutting myself down a while ago on social media.  I felt my voice was changing and I was stepping into stridency.  But I have been reflecting that perhaps stridency has an undeserved poor reputation and stridency in relation to women certainly has; we are sometimes condemned for speaking in a higher pitched way than our male counterparts and sometimes described as shrill and screechy.

I think its time we reclaimed stridency!

So, what does stridency mean?

 ‘If you use strident to describe someone or the way they express themselves, you mean that they make their feelings or opinions known in a very strong way that perhaps makes people uncomfortable.’

Collins English Dictionary 

When I found myself being strident that is exactly what I wanted to achieve; I wanted to make some people feel uncomfortable.  Is that so wrong?  There are times when people have said things to me that have made me uncomfortable and almost always they have led to periods of healthy reflection.  Why should occasional stridency not achieve that?

I’ve reflected that, so long as stridency means that someone is making their feelings about something known in a very strong and direct way, as long as its not personally directed, or unkind, what the hell is wrong with that?

I think stridency has an undeserved bad name.

64977012 - elderly fighter


‘And what do you do?’

Most of you will have been in this situation…. picture the scene…. you are at a social event and making small talk with people you don’t know. Someone asks you ‘What you do?’ – How do you reply?

My response most often is that I am a nurse and my friends often reply with a similar answer relating to their job or career.  It can be described as social identity or cultural identity relating to the roles that you play in your life.  So, what happens when you are no longer playing that role as a major part of your life, how then do you view yourself?

retirement cake

I recently left my long-term career in the NHS as a nurse. I am finding the transition tricky and I think this is because my social identity and personal identity are tightly bound together. I find it hard to say I am ‘retired’ partly because it acknowledges a loss of the social identity that I hold so close. Plus, the fact is, I am still working, but not in the same way and not in the type of role I held for decades. I see ‘retirement’ as something my parents and grandparents did when they completely ceased working and think that this just doesn’t fit me! They seemed so ‘old’ too, much older than I feel.

the girls aug 2018

So how does it feel? It is sort of an identity crisis. I am having to think carefully about why I feel the way I do. I feel the need to strengthen other aspects of my identity and I am doing this through reconnecting with old hobbies and looking at starting new ones. Some of this was planned but some was not. My new little flock of hens was very much planned but some of my volunteering was not but I am enjoying them all and have more plans in the pipeline including learning to bake some amazing bread. – it’s helping.


I also recognise an amazing freedom where I can make different choices; exactly who do I want to work with now and do our values align. I am choosing in different ways that feel more aligned to my preferences – because I can! Sometimes it feels incredibly liberating but can also be very scary and lonely. Unlike most of my working life there is no one to turn to, no work friends who are sat at the close next desk, many of whom I became incredibly close to. The good thing about those people is that most of them are still there and many are very happy to meet socially and have coffee and sometimes more – we have been known to imbibe other fluids! I hope I would be there for them too.

What I did find slightly disconcerting at first was several people who I thought were great work colleagues clearly only saw me as my work role alone. I knew this would happen with some people, but I was surprised who behaved like this. It is as if Anne, who was the Chief Nurse, is no longer of any consequence. I hope I have never viewed people like this and nor would I treat them in the same way!

So, how will I answer the question now? What do I do? I dislike the ‘portfolio career’ cop-out. So, I am going to take a lesson out of my husband’s book. Ask him what he does, and he is likely to say: ‘I am a musician, a maker of costumes, a learner of new things and I make great pasta!’ How will you answer when someone next asks you ‘And what do you do?’

Endings, Beginnings and Being Scared

ward sister

It’s a big deal.  I have worked in the NHS since 31st January 1983, when I first started my nurse training.  I have also been in a salaried role since I was 16 years old.  I have never had a sabbatical and only took 14 weeks off work when I had my son, returning and expressing milk everyday on the midwifery unit at the hospital where I worked so I could continue to give my son breast milk.  I have worked hard, chosen difficult roles and never been afraid to volunteer or do extra.

I have some regrets.  It was impossible to stay at the bedside back then and influence things at a more senior level.  I am of the ‘Management Generation’, where nurses moved in to management if they wanted to be involved in a wider range of things and, as I saw it, have an influence on how things were ‘done’ for patients.  There are lots of my generation like this.  It’s sad because we are castigated for not staying at the bedside and, as I have said in blogs previously, accused of selling our souls.  I was ambitious but all I ever wanted to do was make the biggest difference I could.  I also know I was a good bedside nurse, because patients often told me.

best way to prediuct the future

I hope I have made some difference.  In the last three decades I have always done new jobs; a complaints manager before there were any, setting up NHS Direct, moving into nursing/clinical informatics.  That’s one of the reasons its been hard; being one of the first is often harder than following someone else.  I have given as much support and help to others as I can, even when it was difficult.

Now those times are finished, and I have set myself adrift.

I no longer have a ‘proper’ job and for someone like me that is a big deal.  I think I probably have around 10 more years of career left, at 55 that seems reasonable. I am fed up of being a slave to a job, although I have been very lucky in the roles I have had.  My ex-boss says I had earned autonomy (I think he means he never really knew where I was or what I was doing!!) but clearly, I still needed to deliver what the organisation was paying me to do.  I loved my job, but the timing was right to go; plus, its someone else’s turn to do something with the role.  I don’t want to be the person everyone wishes would get out of the way!

So, I am forging out a new path and I am discovering the things that seem to be the things that make me ‘tick’.  I want to rediscover my voice and use it well. I am increasingly interested in the experience of patients and how we make sure their voices are heard, especially in the digital space.  I haven’t finished in informatics yet where, in particular, I would like to do something about the gender divide.  Its better than it was 20 years ago but I still feel that we have some way to go.

It appears that I need a cause, something to drive me on, so that’s what I am focusing on doing – working out what makes me tick.

I will be doing some work to keep the wolves at bay and feed my family.  As is usual with me though its far from straight forward.  So the trendy way of describing this is a portfolio career.

I will do a small amount of independent work.

I have also decided to join a tiny (a small number of staff compared to NHS Digital) fledgling social enterprise called Ethical Healthcare Consulting.  Why would I want to take huge sums of money from the NHS, working as a consultant? The NHS that has fed me, paid for my house and educated me in the last decades?  This way, as part of a community interest company we can aim to try to put something back and to do some good, whilst bringing our expertise back to the NHS and without making huge profits.  I see us as sitting just outside and alongside the NHS in values and ambitions.

I will also be working with the glorious mHabitat team and trying to help the Leeds Care Record team to deliver the Person Held Record WITH the people of Leeds.

What else, I am not so sure.  The diary isn’t full but that is perhaps good for now.  There is a house to reclaim as mine, new chickens to bring to the garden.  There are books to read and blogs to write.  I have never had a greenhouse and I want to grow tomatoes and blooms like my Granddad did.


Exciting, I guess.  But bloomin scary too!  Wish me luck!

Indelible marks for #70nursebloggers

After 34 years I can still remember her. Why is it that some people we care for seem to make an indelible mark on our memory?

She was the wife of a patient. I worked in Scarborough so lots of older people came on holiday, lots and lots of them; seeking sunshine, the Spa and the long line of  slot machines, ice cream and bingo on the front. They came in droves when the sun came out, despite the continued chill of the North Sea. Of course some of them became unwell.

He had chest pain. An older gentleman. He was tall, upright and smart.

She in contrast was tiny, like a little bird. I can’t remember where she came from but she had a strong accent, possibly Eastern European. She seemed very exotic.

I was a nearly qualified third year student, close to my finals and, as a result, was allowed to work on the three bedded coronary care unit that was part of the male medical ward.

I was always wary of getting too close to families but she was all alone. No family nearby. No other visitors but her. It was before open visiting but we used to let her come and go.

She seemed to take a shine to me. She used to chat ten to the dozen and sometimes I just couldn’t keep up.

Eventually their hotel or b&b booking must have finished because she moved into a room we had for relatives. She asked me daily to go and have tea with her. She wanted to read my tea leaves! I wasn’t sure about this at all!

Eventually I relented and we had tea. She tipped my china tea cup up and looked inside.

She said: I see a place, it’s name starts with ‘L’, I can see money, not riches but enough. She looked up at me, with pale blue eyes and said I can see a tall dark stranger and you will marry him within the year.  I thought she was so sweet; I hugged her and went off to my early shift.  I also thought she was a little bit strange and had a little laugh to myself!

Eventually they went home together. He recovered and I hope he did well.

The other girls had quite a laugh at her predictions. I had no boyfriend and what place started with an ‘L’?

18 months later, I was married to my now husband and living in a little tiny house – 10 Leeds Road.  I smile now. Perhaps my memory has gone awry!

One of the best things about nursing are those people we are lucky enough to meet along the way. We are part of some of the most difficult parts of their lives and we must leave our own marks on their memories but they leave their indelible marks on us too.

Sent from my iPad

Are you digitally ready?

The essence of the session I presented at #NIPEC18 today

Are you digitally ready?  I am hoping I am!

Maybe you are expecting a technical presentation; this is not that.  That’s because I actually believe that this whole agenda is about people.  Its not about a list of technical capabilities – its about how people respond to technology and its about everyone in this room, so how do you know if you are digitally ready?

First of all, for context, I would like to reflect back.

Its 1983 and I am a fresh faced student nurse. Much of the technology we have now didn’t even seem possible then.  We had no mobile phones and as a patient I was boiling my insulin syringe in a pan in the kitchen.

Over the decades since then I have assimilated technology into both my professional and my personal life, as I am sure you have too.

I have had no training in any of these things but I bank online, I order my meds online, I look loads up on google, I have an insulin pump and a Continuous Glucose Monitor.  I love the connections I gain on social media and I use this in both my social and professional life.

I feel I am digitally ready in many senses.

But what is it exactly that makes me so?

Here are the 5 characteristics that I think make me digitally ready:

The first is that I am change positive; that is I have a positive professional orientation towards change, seeing it as an opportunity rather than something to be avoided.  I like doing novel things.  I was the first complaints manager at our Trust, I was part of the team that set up NHS Direct, a nurse led telephone triage service and I think was one of the early nurses to work in an informatics role.  I experiment (safely of course) all the time, like I am experimenting today with you, presenting without slides.  You will have to let me know how it goes!

For me being change ready means exactly that, prepared to try new things, experiment and play.

I believe that all nurses need to be change positive as nursing as its taught today is unlikely to be the nursing of the future.  The pace of change is ramping up and technology is a large part of that, for example genomics and personalised medicine is likely to be come a reality in my lifetime.

I have already seen significant professional change. I used to be a staff nurse on a cadiology ward.  The only way we could do surgery on someone’s lungs was a large incision in someone’s chest.  It took days for them to recover.  It was painful. Now, today they can do this type of surgery using keyhole surgery. Think of the massive difference it makes.  It improves recovery but just think about the changes it makes to caring for these people!  It shifts the focus for nursing too.  And I predict it will be robotics next.

Being change ready is a good life skill as well as a professional skill too!

The second trait is Curiosity, when I mentor people I always advise them to remain curious.

Curiosity drives progress.  If we are not interested in ‘what if’ then things will always stay the same.

Curious people can be intimidating though – they challenge the status quo and make people feel uncomfortable.  I have often asked developers difficult questions about the art of the possible and hopefully driven better outcomes for patients as a result.  Its part of being able to see a wider perspective and to be able to see how technology and data can be used to a fuller strategic perspective.

So what am I currently curious about?  If we want to care for more people at home how can we lever technology to help?  I visited a brilliant care home near Coventry last week where these are using noise detectors in a large home to help to identify when things happen at night.  This increases rather than decreases privacy as it prevents the night staff having to actually go in to rooms at night for checks which in turn frees them up to support people who don’t sleep and focus on their ‘Wide awake club’ meaning care overall improves (and falls have reduced too).  I am interested in technology like Alexa and exploring how we can use it with patients.  Artificial intelligence too……. I could go on…… technology is a rich seam of interesting stuff for a curious person.

Curious people often have great imagination too and can describe how things might be, having conversations, visioning, and leading strategic change.

The third trait is a relentless focus on improvement.

I care deeply about the experience of people we care for, their carers and families.  This is fed from my own long term condition but everyone has the potential to empathise.

Sometimes the status quo is fine when you are on the right side of the service.  But it might be less so when you or your loved ones are unwell.  It changes the dynamic and you suddenly have what I call ‘real skin in the game’.

An example:

This week I received a letter from my GP.  It pointed out that I have a prescription for pre-filled insulin pens but I have no prescription for needles and it enclosed a  leaflet on how to give injections.  It concluded that they had set up an prescription for me to have needles.

What they failed to do was check my record.

The data they hold about me should have told them that I have an insulin pump.  I only use pens as a back up and rarely use them.  I have a box of 100s of needles prescribed 10 years ago that I have yet to use.

If the people focused hard on improvement using data they would have realised a number of things:

I am a pump user so don’t need many needles

I have had diabetes since 1979 and maybe sending me a leaflet about giving injections was slightly patronising (I suspect I have given more injections than the practice nurse).

I think using data is an important part of improvement science.  But use it well. Focus on outcomes and do proper PDSA cycles.

I would love to know what outcome they expected when they sent me the letter.

Improving my injection technique might be the aim and I am grateful for that but they need to use the data in a better way.

Data is the lifeblood of improvement science.

If they wanted to make things better what outcome are they measuring? And how will they judge if they have made a difference.

Nurses who are digitally ready focus on service improvement informed by data!  I can’t stress strongly enough that a digital ready nurse understands the value of data and the contribution it makes to better outcomes.

My fourth point is resilience.  Its quite a trendy word right now so what exactly do I mean?

Resilient people keep trying.  They are bouncy and in this instance keep advocating for the technology no matter how many times they are shouted down or doors slammed in their faces. When you innovate using technology it doesn’t always go well but you have to keep adjusting, reframing until you get the best outcomes.

Its OK to say ‘That didn’t work did it?  Now how can we try to make it better?’  It takes a particular tenacity and resilience to safely fail and keep trying.  It’s a mind set.  I suppose another word for this might be an optimistic mindset.

I honestly think that technology and data create a great opportunity to make the lives of patients and nurses better.  But it’s a journey. Its not a one off.  It takes hard work, as an ongoing endless journey.

I have been in this space for 17 years and I have often felt like I was talking to myself.

Things are changing but digital nurses need to not fall over at the first hurdle but believe data and technology CAN make things better.

Finally trait five!

Networking and learning from each other.

I believe in stealing other peoples good ideas and building on them, if it improves care.  I don’t mean stealing patents, and those type of ideas, but I do mean the sort of mentality that looks around to see what other people are doing to see what you can learn!

Social media is one way of doing this.  Digital in this sense has created a whole new way of learning and communicating across the world.

Networks are a fantastic way to feed your curious traits, or your creative skills.  I urge you to connect and look around.  Are you well connected?  Do you have fantastic networks?

I am lucky that I am often these days asked to judge awards.  It shocks me how often nurses describe their projects to us and see them as unique, special – when in fact the trust in the next county or in NI or Scotland or wherever, are doing the same thing better!  Just think of the potential of networks when they are cumulative for the development of ideas.

Networks are generous spaces; if you don’t believe me take a look at the Fab NHS Stuff site where people are generously sharing their ideas.

So, finally – why do I think I might be digitally ready?

The five characteristics:

I am change positive, curious and relentlessly focussed on improving the experience of service users and importantly outcomes.  I am resilient, prepared to try new things and learn from others.

How are you digitally ready?

curiosity and my cat 🙂


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

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.


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