On getting older: my top tips


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

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

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

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

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

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

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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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!

 

‘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