Last November my Dad died from bile duct cancer, cholangiocarcinoma. Bile duct cancer is an incredibly rare cancer with current estimates of 1,000 new case in the UK each year and 2,500 in the US and an annual incidence rate of 1-2 cases per 100,000 people in the Western World.
Search twitter for people talking about most cancers and there are hundreds of tweets, search it for cholangiocarcinoma and there are a handful of faces. One of those faces is Myra Kohn. Myra’s father was diagnosed with bile duct cancer in April 2012 and has been receiving treatment ever since. I’ve been following Myra’s Dad’s journey on twitter and was devastated to see that this weekend he was admitted to hospital and has not yet regained consciousness. He has dangerously low blood pressure and Myra and her family, while hoping for the best, are almost certainly preparing for the worst.
Back in November last year, a couple weeks before Dad died I wrote a blog post called: 5 things I wished I knew when my Dad was diagnosed with cancer. Myra got in touch to say thank you. She had also paid me a fantastic compliment in July last year when we were discussing blogging, she said this:
So as the last few days have progressed Myra and her father have never been far from my thoughts. I keep googling ‘What time is it in Puerto Rico’, to keep track of what is happening over 8000 miles away, with a family who I have never met, and yet whom I feel remarkably connected. There is very little any of us can do to ease their situation, I’m not religious and don’t pray, but I do blog, and I’ve done my best to blog my Dad’s journey with cholangiocarcinoma and so I offer this post to Myra, her family, and anyone else who stumbles across it in such a desperate situation. I wish you all virtual strength.
What follows is five things that I wish I knew when my Dad was dying of cholangiocarcinoma. I’m not suggesting they will be similar to anyone else, I don’t offer them as truths, I offer them as crumbs of solace in the hope that they may help those who find them.
1. Time slows down and fastens up all at the same time when you’re waiting for someone you love to die
My Dad took an age to die, a couple weeks all told and he was unconscious for about a week of that. My Dad died to soon, it was over before I’d had a chance to tell him enough times how much we cared. Both of these are true, I suspect there is never enough time, but deep down now I know Dad knew he was loved, I know he knew we all cared, and I know he’d be proud of how we dealt with his death, as much as we are with how he showed such resilience and dignity in his death. At times I remember getting incredibly inpatient, I remember wishing it over so he did not die on my cousin’s birthday (his favourite niece, he was never going to do that really), I remember wishing he would somehow gain consciousness just once more. We had a brilliant healthcare assistant from the Hospice at Home team who quite sternly said to my unconscious Dad ‘In your own time Rob, there’s no rush’, turned and looked me in the eyes and told me ‘He’ll go when he’s ready and not a moment before’. I felt guilty for weeks afterwards, what would she think of me, wishing him away. Of course it wasn’t that, and I don’t worry about that any more, she was right, she was focused on Dad and that was the right way to be. There’s certainly no roadmap for death or end of life, and there’s no linearity to it either. It is such a mix of emotion and experience. So worry not about time and instead focus on the experience.
2. It’s true what people say, you do need to eat, drink and sleep – it’s a long journey ahead of you
Of course the difficult thing is that you have to balance the unknown, the lack of timescale, the courageous spirit that you’ve seen your loved one exhibit, with a few basic needs. Everyone nags you to eat, to drink and to get some sleep. In the early days of Dad’s death I was petrified of sleeping, when I look back at it now I wish I’d got more sleep then because I sure could have done with it later. It is incredibly hard to leave someone, even to goto the loo, or to goto work like I had to for my leaving do a couple days before Dad eventually died. In the end I used to focus on what would Dad say, he’d have hated the fuss and would have wanted life to go on. So we tried to balance that. It’s almost a year later and I’ve still not got back into a particularly good diet or sleep regime. No excuses, I’ll sort that soon, but do take the time to look after yourself too.
3. Most people don’t know what to say, but they do care
This is a biggy. I’ve blogged before about people’s discomfort talking about cancer, or talking about death. I’m fairly confident some of this is cultural, but in the UK we’re mostly rubbish at it. What I realised very quickly though, was when my Dad was dying, and shortly after his death, people didn’t know what to say, but I know they did care. I received emails, texts, DMs, tweets, cards, flowers, cookies – all sorts of acknowledgements but very few people were able to actually talk about Dad’s death. That didn’t matter really, they were able to talk about him, and about the impact he’d had on them and their lives, and that was really comforting, especially the facebook comments and messages from his cadet colleagues and former cadets once he died. I think it’s really safe to assume that even though most people don’t know what to say, they do care, they’re just fearful of making a bad situation worse.
4. Your hands and feet go cold when you’re close to death, but…
Once Dad lost consciousness, and it became clear he wasn’t going to regain it (he did that a few times), we asked the hospice team what the signs were, how would we know when he was close to death. It is surprisingly hard to find out what happens when someone is close to death, and there was no way I was risking googling at that time. The one fact that did come true was that eventually, as his heart shut down the blood flow to his extremities reduced his hands and feet went cold. The ‘but’, of course, is that my Dad was never going to be textbook; three times in the course of the time he was dying his hands or feet started to go cold, there was much checking and concern and we readied ourselves for the worst, only for them shortly after to start getting warm again. In the end my Dad died just after 7am and from memory his hands had started to go cold an hour or so before, his feet didn’t follow suit at the same time and we joked they were just well trained due to the miles of walking as a postman. It may be a useful indicator though.
5. It’s ok to talk about it, your experience, your Dad, your hopes, frustrations, all of it. It’s what we’re here for.
At the time of Dad’s death I’d been staying at my parent’s house for a few weeks. I had been working at home, writing handover notes preparing to leave my job, and I had not really seen many people or spoken to anyone except family and medical staff for weeks. I remember feeling anxious about contacting my closest mates to let them know what was happening in case it was another false alarm, my Dad was a bit of a prodigal patient when it came to his cancer. He had defied so many odds it felt slightly surreal to really believe that this was it. I had also gone a bit quiet on twitter (a relative concept of course) but I was concerned people didn’t need their day ruining with me tweeting about death or dying. This is something I consider a lot, I joined an #endoflifecare online conversation last week and fear I may have offended some people with the volume of my tweets. I think it’s important that we speak about death and dying, and I was provided with the greatest virtual support, complete strangers sent tweets, close online friends (who I had never met in person, most of whom I still haven’t) sent messages, one or two sent messages in the middle of the night that could not have been more perfectly timed. When Dad did die I felt the need to blog, to share it, to acknowledge it, and again the support I received from this virtual community was humbling to me.
So Myra, please do share your journey with us, if you wish to. Tweet often or sporadically. Share what you can and wish, when you can, but know there is always someone thinking of you. I hope one day that we may meet in person and share more of the journey’s with our fathers, and I very much hope that your experience is as positive as ours was. Much love.
I wrote a blog post yesterday about the role of troublemakers and radicals in change. It built on this:
and even included some thrown together graphics, a little bit inspired by Kirsty Newman’s blogging e.g.
Anyhow, if you landed here hoping to find it and/or if you are now interested please pop over to my work blog, have a read and share your thoughts. Thanks.
Many, many years ago I started following Paul Clarke on twitter. I wasn’t sure who this man was particularly, and until today I had no real notion how digital he was, so either he was very modest or I wasn’t paying enough attention, but I liked his tweets. He was eclectic, witty, said it as it was, and he took awesome photos.
As context, I have a strict twitter rule with myself that I don’t follow over 100 people. I did for a while years ago and felt I was losing something of the experience, so I culled and have kept it at less than 100 people ever since. I interact with and pay attention to more than 100 people of course and I (sporadically) use lists and scour hashtags etc, but a lot of the regular input in my twitterstream comes from those 100 people. The plus side of that is that you get a relatively in-depth insight into their worlds, well actually we could probably argue whether it’s in-depth or shallow insight, however you get to see quite a lot of it. In a very unique way I feel like I know these people, the snippets gathered from twitter, their habits and behaviours, what people don’t talk about, all of these jigsaw pieces fit together to reveal something of the person. The reality of course, is that we rarely *actually* know people, there are people I’ve known offline for years who still surprise me, and there are many more people who I have forged relationships with online who are just different in the flesh. Hold that thought.
A little more context. Coming up for three years ago (in November 2010) I wrote a blog post called Cancer: the cost of no cure where I discussed the cost of cancer treatment, QALYS (quality adjusted life year measurements), my Dad’s terminal illness and the rationing of NHS resources. Paul left a comment that cut to my core, I had no idea at the time of writing but as I was musing on the theoretical issues of a parent with a terminal illness, Paul’s Mum was dying. If I were ever asked to pick my top ten blog posts, his post A pie for my mum, would be in it without a doubt. I am physically incapable of reading it without tears, even as I type now they are pooling, ready to spill over the minute I stop blinking furiously.
That blog post, that picture, that relationship that Paul described with his Mum resonates so loudly in my ears. Then, and now, it makes me stop and think about my parents, about myself, and about making the most of what time we have and forgiving the learning that we are all engaged in as we communicate with each other. I’m ruining it, if you’ve not read it please abandon this now and go do it. So it was almost three years ago that I realised that Paul Clarke wasn’t only an eclectic, witty, honest guy who took great photos, he was also a writer. A communicator. Shouldn’t have been such a surprise really, given his photography skills it was clear he could communicate, but I rarely read blogs that have such an instant impact.
Fast forward two years and my Dad was dying. A long anticipated, yet inevitably unknown death. Throughout the last few weeks of Dad’s life I kept remembering Paul’s blog post. I became fixated on thinking about it, wishing, hoping that there would be a pastry moment for me to blog about, to honour my Dad in that way, to remember him. I told Dad about that post, we discussed it and he reassured me that I’d better blog about his last days (a huge comfort ever since to know that he was comfortable with what I was doing), we also discussed his eulogy. I had been dreading asking him if he was happy for me to give it, he was a traditionalist at heart and I was worried he’d object. He didn’t, he was quite happy for it, and told me where he’d kept some notes he’d written about his childhood. In the end my Dad’s eulogy, writing it and giving it, became a little work of art for me. I wanted to get it right, I had no pie post, but I had his eulogy and having re-read it the other week I think it sums him up well. In some small way I think Paul Clarke has a lot to answer for there, it was his post about his Mum that I mused on for the best part of two years.
Last month Paul stole my attention again, combining my love of travel, with sleeper trains and photography. He travelled and documented what is quite simply, in my opinion, an amazing adventure at a ridiculous speed! The Great Circular European Railway Challenge, saw Mr Clarke and a small gang of people, travel around Europe by train for two and a half weeks, snapping as they went. I had the absolute pleasure this afternoon of having a guided tour of that trip as Paul talked me through his photos and we sifted out favourites. There were over 800 photos, mostly taken from a train, all taken by Paul. I’m no train spotter but it was one of the best afternoons I’ve had in ages. Thing is to call Paul a photographer is a bit of an understatement, he is a photographer and then some. What he really was for that trip was an ethnographer, documenting people, cultures, their relationship with the railway. He has scenery, landscape, machinery, people, dynamics, everything. He also has self reflection of the smack you in the chest and make you think kind. It’s linked there if you want it, or skip here if you’d just like pretty pictures.
Over the years my respect for Paul, or as I always call him in my head Paul Clarke (he is one of those people who has earned the double element of his name), has quite simply just kept growing and growing and growing. This is a bit of an odd thing really when you step back and look at it. I don’t know Paul, I’ve never spoken to him on the phone, never had a Skype chat, never bumped into him at an event, he was quite simply someone who to all intents and purposes lived in my computer or on my phone. Apart from his awesome pictures, but then they lived on the internet too. Until today. Today I got to meet Paul for lunch and spend the afternoon geeking out over european train adventures.
There are few people who I meet for the first time and feel that at ease with, like instantly from first hug. As an aside there aren’t that many people I meet offline for the first time and think they look younger and better looking than their avatars either! Paul Clarke in the flesh just confirmed what I’ve known in my heart for a long time. He is quite simply one of the most authentic and genuine people I think I know. I know a little more about him from talking this afternoon, but I think I know a lot more from just being in his company and it has just confirmed the mental image I’d created over the years. Confirmation bias if ever you needed an example of it I’m sure.
There was a beautiful sunset as I travelled back to the Westcountry this evening, I’m not for a minute suggesting my photography (caught with an ipad mini) touches on that of Mr Clarke’s, but I felt inspired and couldn’t not act on it. So I give you Taunton, UK, as evidence of what just being around someone positive can do for you! There’s a lot of stuff written about the problems and dangers of online interaction, but I’m bored of bad news, so in an attempt to focus on the positives, there are some amazing people out there just waiting to connect with you. Whether you need someone to capture the story of your wedding or event, inspire you to take photos, make you stop and think, or just accept who you are, then you too need a bit of Paul Clarke in your life!
As a disclaimer I should point out that about four years of connectivity between us has led to one meeting, so it isn’t a quick fix, but I’m sure your life will be better for having him in it!
Last week there was a feature on BBC Radio 2′s Jeremy Vine show discussing memorial benches; they were responding to a news story about a family’s flowers and belongings being removed from a bench they had left in memory of their daughter. Within this feature, Paddy O’Connell, who was standing in for Jeremy Vine, kept stating that ‘we all love memorial benches’. He described his own behaviour pattern as this:
1. Find a bench and sit down
2. Read dedication and admire view
3. Imagine the person and their life and experiences or memories
4. Reflect on one’s own.
This resonates for me, I’ve always been interested in memorial benches mostly because of point three in that chain, imagining the stories or lives of others.
A few years ago (April 2011) I started the Memorial Bench blog. It’s a very simple concept, based on the premise that I’m not alone in my love of benches, I ask people to email in or tweet photos of benches they come across. Ideally we have a picture of the dedication plaque and then a picture of the view, thereby enabling us all to virtually engage in a similar process of memory and imagining, without needing to visit in person.
Since I started the blog there have been 83 posts, most of them benches, but there is also a hanging basket hook, a plaque, a tree and a fence. There seems to be a growing following on the twitter account @memorialbench and also an increasing number of people sharing benches, so if you love a memorial bench why not hop over and follow the account, so you get notified when new benches are posted, and please do share the blog with people and keep sending in your contributions, it makes for a much better spread of memorials than I’d manage on my own.
I’ve been thinking about writing this post for a while, it’s probably been formulating in some way or another since I decided to leave my last job (a year ago), initially it felt too raw and too personal, then it felt too risky, then it felt pointless, and then this week it felt necessary again. It’s a blog post about leadership, management, connection and self – feel free to jump off now if that’s not your bag. This week three key things influenced my thinking:
1) Terry Dunn, a manager at Wigan Council, caught the headlines due to his unique email style. Terry who has worked for the council ‘man and boy’ since starting twenty years previously as an apprentice, now as Head of Environment, was communicating with colleagues about staffing restructures and also commented on his weekend plans and forthcoming wedding. A spokesman for the council said that Terry was ‘acting on feedback from employees that said they wanted to know more about senior managers’. A union spokesperson compared him to David Brent, we’ll come back to that in a minute.
2) I watched Ken Loach’s film Spirit of 45 a stunning documentary made using archive film and recent interviews, it charts the phenomenal achievement of the post war Labour government who established the Welfare State, the NHS, national infrastructure for transport and so much more. The most striking impact for me came from hearing people describe the power of the collective, the shared vision, the wish and want for a better existence, ‘The Spirit of ’45 hopes to illuminate and celebrate a period of unprecedented community spirit in the UK, the impact of which endured for many years and which may yet be rediscovered today’.
3) Finally, I started reading The Icarus Deception by Seth Godin. I’m not sure why I started it this week, I’ve had it for months, but I decided to start it on a flight home and I couldn’t put it down. The basic premise of the book so far (I’m forcing myself to take the second half more slowly because I don’t want to finish it!) is that Godin is laying the challenge to his readers to identify what their art is and treat work as such, the opportunity to create art. The title draws on Icarus who disobeyed his father, flew too close to the sun and plunged to his death, ‘The lesson: Play it safe. Listen to the experts. It was the perfect propaganda for the industrial economy. What boss wouldn’t want employees to believe that obedience and conformity are the keys to success? But we tend to forget that Icarus was also warned not to fly too low, because seawater would ruin the lift in his wings. Flying too low is even more dangerous than flying too high, because it feels deceptively safe’.
What does all of this have to do with leadership and management I hear you ask? As someone who has held several management positions over the past ten years, I’ve been thinking a lot about my fit with a management role. Considering myself, my skills and attributes, what drives me, what drains me, where I’ve come from and where I might be going. I’ve also been thinking about what I admire in others, especially quiet leaders and the power of introverts. Anyone who has read this blog before will know that about twelve months ago I quit a job I’d loved dearly, with no certain path for the future. My father’s (long anticipated) death coincided with my last working weeks, a perfect storm in some way. Since then many hours have been spent considering the future, I’ve established myself as a freelance knowledge transfer consultant, which has afforded me the opportunity to take more time deciding where to focus my energy and to pick and choose my work, the novelty of which has yet to wear off. It also affords me the freedom to structure my time and effort, to spend time working for love not financial reward, whether that is supporting the development of Social Care Curry Club or taking photos of the Rowcroft Hospice Choir, and it also allows me to work anywhere with a decent wifi connection.
One thing I’ve come to realise, helped this week by the three influences above, is that while I don’t think I was a particularly bad manager, in fact if I’m completely honest I think I was an alright manager, it still didn’t drive me or satisfy me enough. The act of managing people just doesn’t resonate well with me, shepherding people to conform and obey, and neither does the notion of being managed either if I’m completely honest. There’s a line in Godin’s book where he says ‘Just because you’re winning a game doesn’t mean it’s a good game’, twice in my career I’ve taken a job with less responsibility than my previous one, a significant pay drop to boot, and on both occasions I’ve climbed up a ladder quite quickly to end up with managerial responsibilities. It would be easy to start applying for management jobs again now, but just because I can be a manager doesn’t mean I should be.
Leadership however, that’s a related but different game. I love leading and I love being led, I seek out leaders all the time and I love watching people lead others. I particularly enjoy watching leadership on social media. One of the things I love most about social media is it’s flat structure, I love analysing communities and discussions and watching people lead, from within the network. The flip-side can be watching people who think they know more, the self appointed gurus, stumble around offering approval and advice, some of which seems to me stuck in an old school management culture. For all the talk of digital leadership, what we seem to be too often stuck on (at least in discussions around social care) is digital management – issues of access, barriers, permission, control. Trying to shepherd people into conforming and using the right platforms, the right hashtags, fitting in to some pre-arranged mindset.
I’ve already raved about Dan Slee and colleagues work on Best by West Midlands, but the more I have thought about one element, the discussion around barrier vaulting, the more I’m not sure I agree with the observation that it’s harder to take a JFDI approach in 2013. If people wish to remain in their organisations, their silos, then yes, social media is much more above radar now, but if they really want to make a break, to change the status quo, to do it differently then I think they absolutely need to take a JFDI approach, if they can afford to live with the consequences. They could be inspired to harness the Spirit of 45, to consider a different future, a brighter future, to expect and deliver on that. They need to dig deep and find their grit!
Grit is the enemy of the industrial age! The industrialist prioritises conformity and obedience to ensure efficiency at all costs, the last thing they need is grit clogging up the machines, or scratching their goods. To quote from Godin ‘Digital smoothness is the antithesis of grit’. I wonder in our discussions of digital leadership whether we are focused on ironing out the grit, creating a digital smoothness, when instead we could be releasing true individualism, encouraging people to stand out, supporting outliers and creatives. Instead it seems that the focus is subtly on control, external motivation and approval as a weapon to ensure compliance (hence the obsession with Klout scores and other measures of influence).
Where does this leave us then? I think we have a workforce that craves connectivity with their managers, who wish to know about them as people, and we have managers with the best of intentions getting it wrong. How does this happen? I would hazard a guess that HR had informed the management team that staff when surveyed had indicated a desire to know more about their managers. Of course they do, because staff aren’t robots, they’re not machines, they wish to be led, they crave connectivity, they want to know that their managers are as human as they are. There isn’t a management text book that will successfully teach you to care authentically; I don’t know but I’d reckon that Terry Dunn is hampered by his environment, a man who does genuinely care about his colleagues, but whose sincerity is lost in translation in that email. Personally I think staff ‘wanting to know more about their managers’ is code for ‘staff wanting to feel connected and trust their managers’.
Which brings me back to Godin who argues that the future lies in the connection economy. One that rewards the leader, the initiator and the rebel, where value is directly related to the information we produce, the trust we earn and how often we innovate. The future he paints is one where we each need to identify a journey with which we wish to commit our heart and soul, one where we are willing to speak up, to speak our truth, not to just conform and perform, he defines grit as ‘the attitude of someone who realises he has the power to care and is intent on doing something about it’.
I’m not sure where my personal journey will take me just yet, I’m taking my time to figure it out, but I intend to continue to carve my own path, to not buckle to conform to fit in with the crowd. I’ll not apologise for it either, I am that irritating piece of grit in the bottom of your shoe, I am the lump of grit that clogs up your smooth efficient machine and asks the difficult questions, I have no manager to rely on to motivate me, I will motivate myself and not give that responsibility to someone else, and better still I will not seek the crowd’s approval. For once if this post gets no hits, no comments or reaction, I’ll not assume it’s because it’s not good enough, or didn’t resonate, I’ll not try to identify the lessons for next time so I can change my style so it gets more attention or hits. I’ll accept it for what it is, I’m creating my own tune, not seeking to dance to someone else’s, this is my view and that’s ok as it is. It doesn’t need the crowd to approve, in the words of the management guru David Brent, I’m riffing:
A month or so ago I wrote about positive fundraising and a bit about crowd-funding on my work blog, you can read it here if you’re interested. It led to quite a lot of discussion on twitter about the role of positive and negative in getting attention to your product or brand, and also a bit about how appropriate it was to crowd fund certain activities or services. It seemed that lots of people were cool with the idea of crowd funding one off projects or start up business ideas, but less convinced that it should be used as a model for other services. So this post is hoping to capitalise on that energy about funding new businesses, ideas and projects.
Oxblood & Co. is the work of Adam Greasley, a graphic designer from Salford. Adam is launching a small range of hand lettered t-shirts that you can pre-order through Kickstarter. Each t-shirt will be a hand pulled screen print (I’m not sure I really know what that means but it sounds good) and for a mere £20 you get to support a new business, an all round sense of ‘I’ve done good today’ smug satisfaction and a unique t-shirt.
You may be wondering why I care so much. I quite simply love the iceberg tee, as a southerner I’d love it more if it had another ‘the’ in it, but I love it nonetheless. I can think of so many situations in life where I’ve been doubted, or in some way judged, by people. I think this is normal, but this t-shirt speaks to that in some way, all anyone is ever seeing is the tip of the iceberg, in any interaction. It’s deep for a t-shirt and worth remembering in life, it’s also worth remembering all we ever see of others is the tip of their iceberg!
Annnnyway. I don’t know Adam, I can’t guarantee this will come good, I do know it’s a risk I’ve been prepared to make, and I also know that Kickstarter rules are that if the idea isn’t funded by the deadline (July 27 2013) then Adam will have no cash and I’ll have no t-shirt! This is a very sad situation I’m sure you’ll agree. So you know what to do, visit Adam’s kickstarter page, watch his video and if you like what you see there, dig deep, pledge away and walk around feeling good about yourself for a bit and knowing you’ll be getting a cool t-shirt in a couple months!
20 July Update
Adam has changed the design so it’s lost it’s Yorkshire twang but (in my opinion at least) gained a better comprehension.
There are only seven days left to show your support and get your order in. This is your chance to support a young designer who has chosen to take the plunge to try and establish his business, through working hard in his spare time. He has drive, ambition, skill – all the things the media would have us believe aren’t apparent in our country any more. Not only that, but by pledging your support to his kickstarter campaign you’ll be giving work to the printer who will hand press each of the t-shirts in Leeds, thereby supporting the local Yorkshire economy. To top it off you get your own t-shirt, a more perfect t-shirt for your annual appraisal I can not imagine, or for graduation, or even a job interview. I’m also quite excited about the fact that you’ll also get the designs as wallpapers to use on your laptop or PC, I’m already imaging my ‘All you’re seeing….’ screensaver!!
Adam’s not asking you to part with your cash just for the sake of it, this isn’t about handouts, it’s about investing in someone’s potential, after all it’s worth remembering All you’re seeing is the tip of the iceberg. Go on, it’ll be the best £20 you spend this month: KICKSTART ADAM’S BUSINESS BY CLICKING ON THIS LINK
Earlier this week I had a brief conversation on twitter with @crouchendtiger7 and @GilesCharnaud in response to Andrea sharing that she was on the panel for the HSJ Most Inspirational Women in Healthcare Award. Andrea was asking for views (especially from people outside the NHS) about who inspires them and why. I offered two suggestions, @amcunningham for her relentless quest to support, encourage and engage people in discussions about healthcare in the broadest sense (that’s more than 140 characters so it probably wasn’t that coherent) and my second person was Sister Clare from @RowcroftHospice‘s Hospice at Home team. Clare has been involved with the service since before it was established, talks about it with a passion I’ve rarely seen when people describe their jobs, and of course for me she is the figurehead of the phenomenal service that supported my family when my Dad died. To be fair each and every one of the people from that team equally deserve the credit, they are all inspirational, to me at least.
I guess that’s a bit of a challenge when you start identifying individuals to award praise or gratitude to and I guess I’m guilty of that by responding to Andrea’s question. I commented that I’m not overly keen on awards and was reminded of the value of recognising those who would not nominate themselves:
Giles touched a nerve for me here as often inspirational people nominated for awards are exactly that. A quick sweep of my twitter archive would reveal a number of people who I am regularly inspired by being nominated for (and on occasion winning) titles like this. That’s great, it really is, I don’t think there’s enough good news or celebration in the world. However it does sometimes feel like there’s a bit of a formula to these things and a pattern in those chosen. Rarely am I struck by someone I’ve not heard of, nominated for keeping their heads down and solidly, reliably, quietly going about their work. My hastily thrown together theory or hunch is that a quick survey of ‘inspirational award winners’ would reveal a preponderance of louder, more extrovert, self confident and voluble individuals.
I can’t help but wonder whether we are overlooking quiet inspiration and leadership and simply suggesting we should all aspire to an extrovert ideal.
I’ve recently been reading @SusanCain‘s book Quiet: the power of introverts in a world that can’t stop talking. As someone who readily identifies as an extrovert, albeit with bookish tendencies, Susan Cain’s work has been a fascinating insight for me. I first stumbled across her giving a TED Talk last year, I think it should be recommended watching for everyone, extroverts and introverts alike.
It’s an engaging, inspiring and educational talk. Cain’s book (I’ve not finished it yet) details her thinking in more detail. Quite early on she sets the context as follows:
As adults, many of us work for organisations that insist we work in teams, in offices without walls, for supervisors who value “people skills” above all. To advance our careers, we’re expected to promote ourselves unabashedly.
In response to that reality, this post is to start the ball rolling in acknowledging five women who quietly inspire me, who you may not know or have previously heard of, who are not promoting themselves unabashedly, and yet who are as pivotal and necessary and inspirational as those that you do.
1. @amcunningham Anne Marie is a very visible presence on twitter, but I don’t experience her as promoting herself or forwarding her own causes. As mentioned above she collects, collates and supports discussion like no other and I’m quite convinced she never sleeps! Im not sure where she gets the energy and enthusiasm from but for me it’s contagious. You can check out Anne Marie’s blog here.
2. Sister Clare and the Hospice at Home team @RowcroftHospice Life changing, quiet, competent, steady midwives of death (my Mum came up with that phrase) with a palpable compassion that I will never forget. You can learn more about their phenomenal work here.
3. Anji Mehta, you’ll sometimes find Anji on the @PSSRU_LSE twitter stream but you wouldn’t know it was her! I’ve known Anji for a couple years now, I don’t know her well, but I do know that she is as reliable and steady as they come. Resourceful, creative and the definition of calm, I have never had an interaction with Anji that hasn’t left me feeling better about life. I think it’s safe to say that the bridge between getting research into practice would be even more flimsy if it wasn’t for the Anji’s of this world; check out the Social Care Evidence in Practice project that she is a driving force behind.
4. A year or two ago I met Nat through work @NatAltDesign when she came to draw one of our meetings. Nat went on to live-draw several events and I’ve followed her on twitter ever since. I should confess that I’m a little starstruck by Nat’s art. I have spent a lot of my career facilitating discussions and writing lists on flipchart paper, despite the fact that I often see things in images! I live in hope that one day I’ll learn to draw properly, but until then I get a creative kick from Nat. You can see her work on her website, and you can commission her too!
5. @GrangerKate An almost celebrity these days, Kate has chosen to share her life and experience of living with cancer with the world. I find her humour, resilience and courage show-stopping. I’m not sure that she would seek the attention she is getting but she is doing all within her gift to share her learning with us all – check out her blog for more.
So there you have it, my starter for five. I’m not saying these women are introvert, and I’m not saying they are more important than anyone else, and the fact they’re women is sort of irrelevant (I’ll do a male list another day) but they are all people who (quietly) inspire me and you can follow them all on twitter if you wish (another criteria for this list).
I’d love to know who else I should be paying attention to and who are the quiet inspirations for other people.
Unusually for me I didn’t check twitter the moment I woke up this morning, instead I visited the twitter website as soon as I turned my mac on. It was this that meant I spotted something quite surprising, to me at least – that last night I’d reached the (completely meaningless really) marker of 35k tweets.
That got me to thinking about how much of my life is contained in my twitter archive. I joined twitter on 8 September 2008 and really had no idea of what I was letting myself in for, or what would come of this new social media thing. I also couldn’t have predicted the twists and turns my life would take over the last four and a half years. So, I find myself 1714 days later, pondering how many amazing people I’ve met, the adventures I’ve taken, the loved ones I’ve lost.
It’s this last point that really sticks. My 35 thousandth tweet fell at the end of
#dyingmatters week and it was sharing an article in The Telegraph that talks about the amazing Kate Granger @GrangerKate:
We need to relearn the art of dying
A doctor tweeting from her deathbed deserves our attention – and our thanks
It’s worth a read, as is Kate’s article at the start of Dying Matters week in The Times, and perhaps more importantly as is her blog which you can find here. To get back to the topic of this rambling, pondering blog post, quite a few of my 35k tweets have focused on death. I’ve always been interested in death, fascinated by our inability to discuss it as a society and simultaneously intrigued and grateful for those that do.
My experience of death has been unavoidable in the recent past, in fact it is unavoidable for us all however much we may hide from the opportunity to discuss things. Six months after Dad died I find myself with less of an urge to talk about death, but with more of a drive to study it and watch how others face it. This past week has thrown up some fascinating resources and conversations that I’ve tried to capture on Pinterest here on my various boards.
The thing that stopped me in my tracks the most was a video from Lord Philip Gould, filmed a couple years ago as he faced death with oesophageal cancer. The film, When I Die, is beautifully shot and starts with the words ‘In six weeks time I will be dead, I will be cremated, I will face huge fear but it is an extraordinary experience’.
I urge you to take ten minutes out of your day to watch this film. It captures a courage and strength that stopped me in my tracks, a sense that I often feel when eavesdropping Kate Granger’s life as I do through the power of social media. Dying Matters week has been and gone for another year, my 35k tweets have passed us all by, charting the conversations and support of friends and strangers alike.
I do think we need to relearn the art of dying, and I think we need to continue to develop and learn the art of dying with social media. Philip Gould and Kate Granger are pioneers in this, sharing their most intimate experiences with us so that we might be better equipped and prepared when we face these situations for ourselves or with those we love.
My 35,001st tweet will share this blog post in gratitude to them. Thank you.
A couple months ago I blogged some feedback about the new First Great Western online booking system. I also blogged about one particular member of their staff who I felt had dealt with me, and my fellow tweeters, particularly well – Ollie. Since then I have received lots of tweets and comments from fellow train users, I’ve learnt about the background of the booking system, had it inferred that I’m a simpleton, moron and indeed zombie, and also been promised a new upgrade to the system in April that will make it easier. Check out the comments on the first post for more of the picture.
So imagine my frustration when I went to book a ticket to Gatwick airport for later this month. Strangely trains seemed to run every hour but the FGW site didn’t allow me to book the 10.32 train direct to Gatwick – it would allow me to book two separate journeys – to Reading and then again on from Reading, at higher cost of course, but the 10.32 isn’t given as an option.
Reg, on the FGW twitter account today, replied to let me know that they all use the same booking system so it shouldn’t be any different – which is what I’ve been told before. I’m partly writing this post to share with Reg to provide evidence that there’s a gap between what *should* happen and what does happen. I’ll wait to see if this changes but in the meantime I’ll be taking my zombie arse down to the station to book in person later today and will have to hope the price hasn’t escalated in that time.
There’s nothing like technology making life easier, and more efficient….not.
Last month Mum mentioned she’d seen a talk advertised in the library, it was being held at our local hospital and was being given by Sarah Tobin. It was on a Monday evening, a day I worked at home, Mum was curious and thought it might be of interest to me from a work perspective. So we agreed we’d go and I did a quick google to find some info and came across this. The event was the first attempt at a Health Science Cafe event being held at the hospital and most importantly they’d be free parking, a small but important manner. If you were to play a word association game with anyone who has had anything more than casual use of the health service I’m confident it wouldn’t take long before they mentioned parking – finding a space only being half the battle. Anyhow, I digress, this was an early evening event with free parking and Sarah Tobin, what was not to like.
Who is this Sarah I hear you ask? Sarah was one of the many professionals who provided support for my Dad, and all of his family, when he was first diagnosed and through his treatment for bile duct cancer. Specialist nurses are worth their wait in gold, they have intricate knowledge of what you are facing, have always made themselves readily available, always *always* return your phonecall if you have to make one, have the ability to unlock doors and generally give a sense of confidence in a quite daunting experience. I guess you could think of them as nursing sherpas who guide you through it all….we were lucky to have the support of several different ones and they all helped enormously.
Last Monday we arrived at Torbay Hospital, parked up and I checked in on Foursquare and was delighted to see I’d not been to the hospital in nearly six months. Dad died last November and until then I think I had visited at least every four months and in the latter stages of his life far more frequently, with a large number of visits as an emergency admission. The last time I’d been at the hospital was to drop Mum up to deliver thank you tins of chocolates to the staff who had cared for Dad. I still wasn’t really sure what to expect but off we went.
We were greeted by Helen, the Trust librarian who came up with the idea of the Health Science Cafe at Torbay. She had mentioned in the press release linked above that she felt it was important for people to have the chance to visit the hospital site for occasions other than just to meet medical need. One of my take home thoughts from the evening was how good it had been for me to return to the hospital that has played such a significant role in our lives over the last five years, with a positive reason. To drive up without the nagging doubts, the butterflies, the anxiety, the stress. To be honest it felt a little odd, after we’d parked up I had to remind myself that there was nothing to worry about!
The talk was very informal, there were about ten of us there although I think most people were previously associated with the hospital in some formal way. Sarah introduced herself, she now works 0.5 as a specialist nurse and 0.5 in teaching and education. She told us a little of her own personal experience, and indeed what fuels her interest in this area, and about her masters that focused on whether you can teach compassion and her current PhD studies in the same area.
She went on to talk about a number of key approaches adopted within SDHT (South Devon Healthcare Trust) to support work on compassion. These included:
Patient storytelling – this was introduced as a benefit to patients, where they are given the opportunity to share their experience. Their experience is tape recorded, transcribed and then shared with teams in a facilitated discussion designed to identify future improvements.
Observations in care – after a day long training session people are given 2o minutes to observe a ward/healthcare experience. Observers work in pairs, they note down what they see, hear and smell, purely as objective observations with no reasoning or judgement attached to them. They compare and contrast their notes after 20 mins and feed back to the staff members they have observed.
Schwartz rounds – this approach developed in the US at The Schwartz Centre and piloted in the UK by the Kings Fund provide a monthly, one-hour session for hospital staff to discuss difficult emotional and social issues arising from patient care.
Other approaches discussed included the development of a Leadership Programme for nurse leaders and ward managers, the introduction of the Friends and Family test, and Jeremy Hunt’s new requirement that nurses work for a year as healthcare assistants before training. The discussion was wider than just the steps taken to increase compassion, we also discussed the issue of complaints (90% focus on communication in some way), the changing shape of training over the years to include a greater focus on communication skills, the balance of positive to negative feedback (3:1), pride in nursing, how to gather feedback to get a hospital wide picture, the number of patients in hospital and their reasons for being there (80% of the surgery carried out at Torbay is now done as day surgery – this leads to changing methods of patient care, changing demographic of inpatients and so on).
Media Impact Mention was also made of the media and the negative expectations that many people have of hospital care, before experiencing it for themselves or those they care for. Initial analysis of the Friends and Family test feedback at Torbay commonly reports ‘it was loads better than I was expecting’. The local paper had been invited to advertise the Health Science Cafe and run a story on it, they had declined the opportunity. I can’t help but feel bad news sells more newspapers than good! Maybe they’ll get behind the later events, perhaps even send a reporter along to share with a wider audience.
Our discussion of the impact of the media also extended as far as two fly on the wall documentaries currently showing on TV, 24 Hours in A&E filmed at King’s College Hospital now in it’s third series, and Keeping Britain Alive: the NHS in a day filmed across the NHS on Thursday 18 October. I have a real interest in these documentaries, part morbid fascination with something new, part as an example of human behaviour and within that the compassion captured, part also as a reminder of how lucky we are to have a national health service.
While I imagine only certain people are interested in these programmes (best viewing figures for an episode of 24hours in A&E just top 3million people, Eastenders and Coronation Street routinely get double or three times that), that is still a large pool of people who do appear interested in this user generated content. One Born Every Minute, another Channel 4 documentary series now in it’s fourth series is set in an NHS Maternity Ward and clocks viewing figures of almost 5million; it’s not clear what exactly it is that people are interested in but I’d hazard a guess that it is part real-life stories that could as easily feature us and our family members as players that attracts them. Thinking about the three approaches Sarah had discussed one of the common features of them is reflected in this documentary approach, they all give a real-life focus and focus on the experience (of patients or staff) and allow for reflection on that experience as a prompt to identifying learning points, or building resilience, and also in humanising people.
This blog post was designed to share the experience a little more widely, partly because I was left with quite a few ideas and questions I’d like to think of further, so your own thoughts and experiences are very welcome. A lot of my thoughts were about how it’s possible to create a common team/organisation wide focus that focuses on an individual’s experience of compassion; how you define, or develop a shared definition of compassion; how you keep learning and reflections alive and tangible; whether there is enough focus on positive feedback as well as negative; how important and value laden compassion is – perspective being key; whether certain environmental circumstances are likely to reduce, or increase, compassion; and whether greater focus on staff members’s as individual’s could create behaviours among patients that increase their own chance of being treated compassionately (and vice versa)! What do you think?
Pick what you’re interested in…
- @DrUmeshPrabhu @JamesTitcombe @KayFSheldon @cmoMD @RoyLilley isn't there a consultation on new processes open at the moment? tweeted 7 hours ago
- @rich_w @jaimeelewis Don't, because Jaimee and I will feel obliged to celebrate your life in a non-cash related manner :) tweeted 16 hours ago
- @RoyLilley @JamesTitcombe I guess this is what I'd like to hear more about Roy - what could be done differently, within CQC remit. Thanks. tweeted 16 hours ago
- @rich_w @jaimeelewis Double grumpy, this made facebook + twitter - don't test the theory tho Rich, or I'll be forced to keep my wallet shut! tweeted 17 hours ago
- @rich_w @jaimeelewis Ironically of course the guy was running for an average, almost niche cause, he had identified w the norm. tweeted 17 hours ago
- @RoyLilley I share your frustrations about the slow pace of change, but unsure who are the right people/place to target. tweeted 17 hours ago
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