‘Don’t think of all the misery, but of the beauty that still remains’


Anne FrankFor me it feels like it has been a dark couple of weeks. Looking with optimism has led me to look more closely at family, nature and good friends. I think, however, Anne Frank was a wise young woman when she said “I don’t think of all the misery, but of the beauty that still remains’ (The Diary of a Young Girl).

Acting on these words, this blog is dedicated to all those who continue to inspire me and give me hope. What do I mean when I say ‘inspires’?  This is my personal list of reasons people might inspire me:

  • Passion – they are themselves inspired
  • Tenacity – in the face of adversity
  • Imagination – They engage my imagination
  • Optimistic – They make me feel optimistic
  • Togetherness – They make me want to join in
  • Purpose – They work on things that I think matter
  • Moral compass – they have a clear moral compass that they operate from

The list below is not an exhaustive list – there are many people who inspire me  – these were the first examples that came tumbling out:

nightscout

Night Scout – #wearenotwaiting @nightscout

I find the story of Night Scout inspiring because it took the tenacity and togetherness of a group of parents whose children have T1 Diabetes to do this. Can you imagine being told that your child has a serious, potentially life threatening condition? Wouldn’t you want to do as much as you could to help them to secure a healthy and fulfilling life? That’s exactly how I think the parents who set up the Night Scout Foundation must have felt and the system just couldn’t keep up with them.  Waiting for technical solutions that might help takes an age in health systems, decades sometimes. This group of parents decided that #wearenotwaiting and have gone on to develop some technical systems that help the monitoring of blood glucose for children despite of the system. I love their slogan ‘Be Impatient’. I love that they used their collective skills and did it anyway, despite being told, I suspect, they shouldn’t.

Read more about the Night Scout Foundation

The power of community and the drive of wanting to make things better is inspiring.

The Hen Power Project – @equal_arts

Sometimes things are so simple they have a beauty that comes from that very simplicity.  We know that social isolation and loneliness can lead to poor health

Dealing with loneliness is a complex social issue, as my personal experience tells me. This is why I think the Hen Power project is so inspiring. It is creative and optimistic and make me want to join in and indeed one day I might!

The Hen Power project is a project from Equal Arts, a charity in the North East of England. They work with some of the most disadvantaged people who are in their older years.

‘Our work focuses on giving people the opportunity to explore their imagination and live in the moment.’

I defy you to watch this video and not feel inspired!

We Nurses – @agencynurse

wenursesMany of you will know some of the story behind ‘We Nurses’ but I think I am lucky enough to know most of it. I believe Teresa Chinn is the key reason for their success – what is it that so inspires me about Teresa? It is her values. She is focused on community, sharing and collective value, sometimes at her own personal cost. I think she has a clear moral compass that is inherently the reason why We Communities continues to thrive.

Dr Sue Black – @dr_black

SAVINGBLETCHLEYPARKSue inspires me being a feisty and passionate woman. I remember meeting her in London and being inspired by her story about Tech Mums. But not only that then she helps to save Bletchley Park. I won’t try to replay her story here, Sue tells it so much better than me, you can read most of it from her blog.

Sue is a great example of someone with tenacity and determination to do what she thinks matters.

 

Playbox Leeds @emmabearman

tiles

A sample of the lovely tiles the Playbox team created with the community to improve the benches in the park

A shipping container and a whole lot of courage, inspiration and belief in her community is what it took, I suspect, for Emma Bearman to set up Playbox. In an area of Leeds that is less well known than its city centre cousins, Armley now has a great focus for people and play. Emma is like a force of nature and I admire her passion but also how well her projects encourage people to join in. Watching the development of Playbox has been great to see and is a great antidote to much of what the media would lead us to believe was our current society and communities.

 

You can read more about Playbox here and follow Emma on Twitter to be inspired.

Michael Seres @MJSeres

MichaelMichael is another force of nature. I have been following him for quite a number of years now and have been lucky enough to meet him. I won’t try to tell his story here as you can listen for yourself here as part of the Spark the Difference Exhibition (there are also many other stories here that will inspire)

Michael is one of the humblest men I have met but his particular inspiring skill for me is, that despite the odds, he has an air of optimism and hope which makes me feel that things will work out and that all is possible.

This list is not exhaustive by any means and I may write about more people in due course but what inspires each of us seems to be more poignant and potent in darker times than perhaps when the sun shines perfectly down. I hope they help you feel inspired too.

Who and what  inspires you?

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Vocation – the pull of the bedside


ward sisterWe have had a busy few weeks. We have recently had much sadness in our family and this weekend an aunt, who has been left with no direct children at 84, was admitted to hospital. Her lovely best friend (oh to have such long lasting friendships), and the family, have been doing our best with rounds of visiting, making sure she had things to talk about, and more importantly perhaps, eat; a round of prawn sandwiches on special request, a lovely fruit salad, a fruit jelly studded with raspberries. Another friend gave her a lovely leg massage. We are all generally trying to make her feel better.

But this blog isn’t about her care it’s about my instinctual response to being at the bedside again.

I just feel I know what to do to care. I instinctively understand how to make someone feel comfortable or perhaps, more importantly, when they are not. I knew that she needed her own things, that food when you feel poorly comes in small packages and when tears are close, it’s time to take a hand.

There was another lady in the bed beside us. She clearly couldn’t see very well so was often calling out but once you got close she could focus. Her hearing was better on one side than the other and she likes tea. I couldn’t stop myself going to help her. We didn’t talk for long but in a few minutes I learnt that she too had lost her son at 60, she liked to garden and grew tomatoes and she regretted some things about her life. I pulled her tea nearer and opened a bar of chocolate for her that we had brought.  It was ironic that we were interrupted politely by a nurse who closed the curtains and did a memory test with her in a very loud voice.  I know she doesn’t know what year it is.

Nursing badgeToday I suggested our aunt had a shower – she looked at me and said ‘Can I?’ We went to the horrible institutional shower room and I handed her the nice shower gel and shampoo I had brought. I asked her if she wanted me to wait outside having sorted a seat for her in the cubicle. ‘No!’ she exclaimed ‘You have seen all this many times before’ and I guess she was right. I know she enjoyed her shower and we put on skin lotion and hand cream afterwards. It is the first time she has been in her own clothes for 4 days!

The thing about the last few days is I strongly felt my urge and instinct to care. This wasn’t just because it was family; it was more than that. I know I only had one person to help and that I had the luxury of time but the satisfaction I felt was immense.  I feel drawn to it, as if it fits somehow.

So, I suspect, this weekend I have been reminded of the meaning of ‘vocation’ the strong draw, almost a summons, to occupation. Sometimes I wonder if I’m kidding myself, if perhaps I have just been lucky to find something I like to do so much, but this weekend has reminded me that its more visceral than that.

As I was leaving the ward the two ladies in the beds opposite said to me ‘you were lovely with that lady – you should be a nurse’ and I smiled, and said ‘thank you’, after all what a huge compliment and wondered to myself what had dragged me away from the bedside all those years ago.

anne 1983

Sharing no more


Imagine this….

Woman aloneYou have had a really shit few years. The details don’t matter but suffice to say you feel you are moving on, you have met someone who you want to spend more time with and all of the things you have been through are being pushed back away somewhere quiet in your mind. You know you will need to talk about it at some point, after all its nothing to be ashamed of, but you are not ready. Your new partner doesn’t know about your loss and you are both enjoying the next phase of your life. You have decided to move in together and you have been clearing stuff out, sending old clothes and junk to the charity shop. Most of it you will never use again so you feel good pushing things into black bin liners and giving them away.

A few weeks later you are sat in bed on a Saturday morning having a lazy coffee when one of your friends messages you on Facebook. The next thing you know you notice you have a few messages which is unusual – you have an account on Facebook but you are not a big user as you are quite a private person really, but it just seems the thing to do right now. Your friend says have you seen the post of you on Facebook?

Loneliness empty benchYou open your Facebook timeline and staring back at you is a picture of yourself and David, before he died, when he was looking drawn and ill. The photo is a precious one but is not for sharing, yet here it was. You read the post and you realise that the precious memory stick that you kept all those memories on must have been left in one of the handbags you took to the charity shop and one of the assistants at the shop was trying to find the owner. You knew they were trying to be kind, to reunite you with your photos, but its unbearable.

You didn’t expect the next thing to happen either. Before you could blink an eye the post was being shared, posted and shared, posted and shared. The list of messages were people who recognised you and who wanted to bring the post to your attention.

You wanted it to stop. Your new partner had no idea about David and you weren’t ready to share the story.

The trouble is you just can’t stop it. The messages keep coming and no matter how often you ask someone to delete the post it carries on being shared. It is breaking your heart.

This isn’t a true story but the essence of it is true. I shared something on Facebook recently – I thought I was being kind and helpful and I had no idea what distress I would cause. The person who messaged me I don’t know them well but I could sense their hurt and distress. I removed my post but of course it was too late and I was just a link in a chain of many postings.

facebook likesThe lesson I learnt was that kind sharing acts can cause harm. I had no idea those photographs I shared would hurt but they did. We often talk about the negative aspects of sharing and I often see posts from teachers who are deliberately showing kids how far images can spread but I have shared things when I thought it was the ‘right’ thing to do. I won’t do this anymore. I have never really shared missing person pictures either and here is a great blog on why:

You never really know the back story and no matter how well intentioned you might be it can go wrong – so I will be sharing no more.

Anne

 

Digital Health – Big data, big business…big problems?


technology futureOn 26th April I was invited to join the debate facilitated by mHabitat and Leeds Beckett University as part of the Leeds digital festival.  I accepted with some trepidation – I have never participated in this way in a debate before.  The motion was:

‘the house believes that digital innovation in health is benefitting big business over patients’

I was to speak against the motion and was a seconder.

I really enjoyed the experience.  I realise I can be quite competitive and that comes out, even when its merely an academic exercise.  We did manage to sway the audience with the end result being 15:18.  I may have cheated slightly at the end by whipping my insulin pump out of my bra and waving it around as an example of digital innovation😉

The debate led me to think about the importance of ethics in business and in particular the health sector.  I do believe we need digital innovation but we need to be sure we act this out with a clear focus on an ethical approach to technology and the use of data.  I am not sure we yet have this sussed.

Here are my words:

‘To remind you the motion is that the house believes that digital innovation in health is benefitting big business over patients.  It’s my task to persuade you that this is not the case!

My proposition is that the relationship between big business and patients in relation to digital innovation is one of interdependency and not supremacy of business over patients, that is, that big business and patients have a mutual reliance in successful digital innovation.matching

I think most people would agree that innovation is only possible when innovators successfully fill a need or solve a problem.  I would suggest that those gaps and needs belong to patients and if big business fails to seek these out and productively meet these needs then their products will fail and join the lists of 1000s of unsuccessful apps piled on the mountain of useless apps.  We know that 90% of app install are generated by only 10% of apps – this means that understanding the needs of patients and meeting them is crucial to a successful business strategy; its a mutually dependent relationship.

In the past the biggest buyers of health technologies were health systems but today things have changed.  According to Ofcom (2015) 66% of adults carry a smart phone.  This shifts the technology infrastructure to the pockets of actual or potential patients – I have more computing power in my handbag than I would ever have dreamed possible in 1979, the year I was diagnosed as having T1 Diabetes.  But I also have buying power as the cost of technology has plummeted; the ability to chose and rate devices in increasingly transparent way is becoming the norm.  To imply people are not able to chose and can be hoodwinked by big business is paternalistic and wrong.  Meeting he needs of these increasingly tough customers is a priority for the technology providers. It’s tough out there with patients even going so far as to share recommendations!

The public need to work with technology companies.  We need them to be successful.  We need them to invest in creating successful innovative products that meet our needs.   High quality technology can take years of development and investment. If tech companies are to invest they need to invest in successful products – of course that’s those that meet the needs of patients (public and citizens).

But of course for those cynics out there you may think that it’s still just about the money….. well that maybe true but existing regulation and rigorous evaluation that needs to take place in health settings puts some brakes on industry – some might say it actually creates barriers to entry.  I might say that the rigor of assessment through mechanisms such as clinical trials means that big business has to care.

knowledgeSo my conclusion is that its a mutual relationship with power held in both camps, where the only way for big business to meet the needs of patients is to fill the gaps and this needs to be done in partnership with patients, or even by patients, who, god forbid, actually lead the technology innovation; innovation such as #nightscout and the #wearenotwaiting project.

Finally to quote Ghandi (because in a debate always end with a quote!!)

‘It is difficult, but not impossible to conduct strictly honest business’ (the emphasis is mine)

 

‘Why can’t we do it like Buurtzorg?’


buurtzorg
I was watching the Florence Nightingale Conference 2016 remotely last week and I was delighted to see Jos de Blok., the CEO of Buurtzorg on the platform describing the evolution of Buurtzorg neighbourhood nursing service – he never fails to impress and his charismatic leadership shines through his presentations. As a Florence Nightingale Scholar I was privileged to actually visit Buurtzorg and go out on visits with a nurse and I have blogged about that experience here.

What struck me again last week was the question I keep getting asked – ‘Why can’t we do it like Buurtzorg here in England?’

When we visited the Netherlands I remember someone asking Jos what, in his opinion, was the biggest challenge in the UK to implementing a similar model to Buurtzorg. His response? ‘You are a brownfield site.’

Brownfield is a term used in urban planning to describe land previously used for industrial purposes or some commercial uses. Such land may have been contaminated with hazardous waste or pollution or is feared to be so.

 

For those of you who are unsure what his meaning was the term brownfield site is used in planning terms to refer to a site that has already been developed, in contrast to a greenfield site where there is no existing development.

The same terms are also used in software development and deployment, where the presence of existing systems makes the transfer across to a new system more complex; there are legacy systems to consider and potentially old networks, boxes and wires to deal with moving from old to new.

When Jos set up Buurtzorg he didn’t have to worry about any of those things. He was able to start small and build and set up everything from new. He was able to learn and test the approach as he went along and could make decisions about how fast to develop without dealing with a concern about maintaining a nursing service to existing patients.

derelcit buildingSo the answer to the question ‘Why can’t we do it like Buurtzorg here in England?’ is a complex one. But here are some of the potential answers:

  • We have an existing service to maintain to patients, uninterrupted and maintaining safety – the shift from here to there is seen as too risky;
  • We have an organisational framework where there would be some people whose roles would no longer be required (similar to old boxes and wires). Middle managers don’t exist at Buurtzorg at all;
  • The Buurtzorg model requires executives to cede power to frontline staff and to stop many of the management processes that underpin the way we currently work;
  • It requires high trust and bravery from organisational leaders and commissioners – tearing up existing boxes and wires;
  • It requires nurses to stop seeing the hierarchy as the way to be promoted and to focus on increasing satisfaction through self-development of clinical interests;
  • The Buurtzorg model does not really have specialist roles and nursing seems to have increasingly become specialised in the last decades; Is nursing up for that?
  • Meeting regulatory requirements would be possible in the Buurtzorg model through the use of technology. But who would dare to have an organisation with such a small amount of checking and performance managing?

Just a few of my thoughts. If I had the power though, I would have a go. The experience of visiting with the nurse I spent time with was unforgettable and reinforced for me the reasons why I went in to nursing in the first place – as Jos would say ‘doing what is normal’ and what is ‘common sense’.

You can watch Jos talk about Humanity above Bureaucracy here.  Listen to why he says he started Buurtzorg!

 

 

 

Ordinariness


Can you remember where you were in 1979?1979.png

That’s how I started my TADTalk2016. I was privileged to be asked by Dr Partha Kar to speak at the inaugural TAD – Talk About Diabetes – talks. The event was a series of speakers who all had Type 1 Diabetes; each gave a story related to their experience. It is the first time I have really talked about Diabetes and my journey – I have talked about the menopause to a small group and talked about social media but never my personal account of Diabetes.

TADTALKThe other speakers were inspirational: Joe, who was a professional cyclist, Lis who has had T1 for over 50 years and at times has struggled with food, Laura who has had many struggles of her own including nearly losing her sight, Wes from the wonderful, inspirational #wearenotwaiting project where parents of children with T1 are taking action to find solutions, Jamie Reed MP who was diagnosed at a key time in his political career and went on to win his seat and Richard who was the first person to receive an islet cell transplant.

I felt inadequate – I had no dramatic story to tell. My story is one of ordinariness – I wondered why I had been asked to speak.

I decided to tell the story of my journey through three decades of care but I have no highlights, no major events or dramas that light up that path. Was that enough? Do I need to have struggled with the dark art of diabetes to have a story to tell and more importantly one that people want to hear?

So what was I doing in 1979?

diabetes 1979I was leaving school, in the same month as Margaret Thatcher became prime minister. I was wearing platform shoes and on occasions long white socks, as you will see if you look at my presentation. I had my first serious boyfriend and we spent our spare time roaming on his motorbike around the Yorkshire Moors the North East Coast and beyond. I was fiercely independent even then, as a child from a broken marriage. I had been in my first proper job for around 2 months when I was diagnosed, promptly via a blood test by my GP and spent a week on an adult medical ward where I saw people die and helped the nurses do the teas and fed old ladies at mealtimes. I was 16.

In the decades that followed there were many changes to my diabetes care. Sometimes those changes have been a challenge to accept. If you have been told you must do something for a decade and then someone changes the rules, on what often feels like a whim, it can be difficult to do. But I’ve coped. I have never been in hospital as a result of my diabetes, except one trip to A&E when I put my back out when I fitted as a result of a hypo – I was back at work the next day. I refuse to give in and I have not really had any time off work since 1979 as a result of having T1. I’m touching wood and the cat for luck as I type these words as of course anything could happen tomorrow, or the day after, or the day after that….

So what is the point of my story?

I think I have learnt to be resilient and I think that is a key skill and attribute for someone with T1 to build.

What do I mean?

Psychological resilience is defined as an individual’s ability to properly adapt to stress and adversity. Stress and adversity can come in the shape of family or relationship problems, health problems, or workplace and financial worries, among others.

Psychological resilience – Wikipedia, the free encyclopedia

https://en.wikipedia.org/wiki/Psychological_resilience

Sometimes Diabetes can feel like you take two steps forward, and one step back. Resilience is knowing that despite this you are still moving forwards.

Resilience can be learnt. For people with diabetes I believe that resilience is built not through the formal education for diabetes, important as that is, but developing the know ‘how’ of diabetes; the practical know how to live with the challenges of stress and adversity too.

Peers have been increasingly important to me in the last 6-7 years. Support networks, whether they by family, friends or peers can help you to stay focussed and pick yourself up. They can also be an incredible source of shared knowledge.

anniecoops diabetesI am intrinsically an optimist and that helps too. I like life goals, not HbA1C targets, but vital ones wanting to have a family (which I went on to do), I wanted to be a nurse and I still want to make an active contribution to society in any way I can – my life goals.

Looking after yourself is key, taking time to do what makes you happy. Keep a positive view of yourself and look after your mental health and well-being as much as you do your physical health. Taking time to reflect and mindfulness – living in the here and now and not worrying too much about tomorrow – can help.

Laughter is an important part of my life – I love laughing and making others laugh with me.

Stay up to date and keep on top of what is going on in the world of diabetes. I use social media to do this but there are lots of ways including being a member of Diabetes UK.

And finally knowing when to seek help is very important to maintain resilience.

So mine is a story of ordinariness. No drama and no crisis (yet). I hope that story was enough on Saturday as I represent the ordinary folk, those who just get on with it and cope with managing the dark art of diabetes. Long may my ordinariness last!

Resilience

Starting something new


imageI am starting a new job – there, I said it ‘out-loud’. I have been a bit worried about writing it down as I thought it might jeopardise it, as this is one move I really wanted to make, to do something where I hope I can make a difference. I also know I am nearing the last leg of my ‘formal’ career – I know I won’t stop doing ‘something’ but I suspect what that is might be very different 5 years from now.  I can also see that moving from a relatively high profile role to a local one might have its own teething pains too.  How can I change how I behave to reflect where I will live?

Most of the moves I have made in the last decade have been an evolution of where I was, a natural progression, easy in the simple growth of thinking and skills. This time it’s different. I’m moving to a community provider and trying to use all my new thinking and skills in a completely different way.

I am aware that in the last 5 years I have behaved as an instinctive manager and leader and perhaps have thrown in a little bit of organisational development as I have gone along. I have done OK, feedback has been generally positive, but I really want to develop more – that will require effort on my part.

ambitionSo I start my new role with some anxiety; I’m setting high standards for myself. I also know that, to do what I want to do I need to move into spaces that will be less than comfortable and may be lonely. I have written before about PWI (perceived weirdness index) and how being different can affect change; I also think that occupying a more neutral space allows others to lead, if you help to shed the light, rather than being the light.

So I have been thinking about my personal ambitions for the next couple of years and here are my first thoughts:

  • Organisations are complex and dynamic and are powered by humans – I will respect the unique nature of the organisation I work in and those people who make it the way it is;
  • I will endeavour to support others and create environments where people can give their best;
  • I will use my natural ability to see links and connections – I will support others through acting as a navigator rather than driver, shedding light on the paths available rather than choosing the path – ‘doing with’ not ‘doing to’;
  • I will work hard at developing others in the organisation and avoid dependency on me;
  • I will throw light on unmentionables and take difficult conversations out of the shadows by acting with honesty and integrity;
  • I will value conversation over process;
  • I will be opportunistic and work with the power of others to support change;
  • I will continuously reflect and learn;
  • I will draw others to the power of communities in action and in doing so support changes to practice;
  • I will operate from a position of expert rather than that of manager and in doing so act as a guide rather than through exercising managerial power;
  • I will respect partnerships with citizens/patients as a principle;
  • I will keep a relentless focus on citizens/patients/service users; the quality of what we do and how they experience it.

I think this is a challenging list. I will see how I go. You might too as I will blog about some of these things as I go along.

Is there anything I should have included on my list that I have missed?

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