My 35 thousandth tweet

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:

The title and tag line to the article are:

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.

Life after Bobby: the first six months

Today it is six months since Dad died. I can’t quite believe it, one minute it feels like yesterday and the next like it was years ago, six of the longest and shortest months of my life. Time is a funny old thing, especially where grief and loss are involved. To mark the occasion this morning I went for a dawn walk down Meadfoot Beach, one of Dad’s favourite places, and I was there enjoying the view thinking of him at the time he left us.

I’ve been thinking a lot about Dad and loss and grief this week. When Dad first died I started making a list of the things that I’d have liked to share with him, I don’t keep up with it these days and in a way that feels like less pressure. Some days I still catch myself saying ‘Must ring Dad later and tell him about that’ or ‘Wonder what Dad will say about how I should fix X or Y’, it happens less often but it’s like the new neural pathways aren’t worn in enough yet for it to be default. One thing I’m confident about though is that Dad would be proud of us as a family, and particularly of my Mum, for how she is handling life.

I think my Mum is the living definition of resilience at the moment. The thing I think he’d be most proud of is how naturally she has taken to her newest acquisition – an iPad mini. My Dad was a bit of a technology fiend, or would have been if he could have afforded it. He used to love Tomorrow’s World and was a sucker for a new gadget! I remember him coming home pleased as punch with a CD player when they were very first released. Of course he could only afford one CD to play on it for months, but it was the feeling of being ahead of the game that counted for him. I’d held out from buying an ipad mini for the best part of a year (I’m not so interested in being cool obviously), I was waiting for v2 to be released but decided to stop waiting last month! As soon as Mum saw mine she was smitten, and less than a week later she had her own. She’s busy listening to her choir music on it, emailing, shopping, banking and kindling and touch typing like a digital native. Every time I see her use it I feel proud, and get a warm fuzzy glow just thinking of what Dad would say.

It’s not all been plain sailing though, especially the last couple of weeks. Yesterday, we had to have Dilys, my parent’s gorgeous, dignified, graceful and beautiful cat put to sleep. The vet said something rather lovely about Dad wanting his cat back, it made me shed a tear at the time (don’t worry it was a Cheryl Cole one) but it was such a comforting idea! Dilys knew when Dad was dying, she wouldn’t leave his bed the night before and last week she’d started sleeping in the room that he’d died in. We tried everything to get her to eat but in the end she decided herself that enough was enough. I watched on in awe as my Mum dealt with yet another loss with such dignity and resilience.

Since Dad died I’ve been trying to rebalance my own priorities in life. My ‘Work Less, Live More‘ board on Pinterest now has 45 things on it; I’ve only crossed one thing off so far (to watch a live Cross Country Ski race) but there are a glut of things that should get crossed off in the next month! Mum was always complaining to Dad that despite years of serving in the Army Cadet Force he never once took her camping, not properly under canvas. So next month we’re righting that wrong and my Mum, sister, my two nieces and I are going glamping! I can’t wait, I’m sure there will be lots of laughs, reminiscing, new memories formed and no doubt one or two crossed words, but I’m really looking forward to it. I also have a couple of birthday treats planned, more on those in due course.

So, it’s six whole months post-Bobby, life isn’t the same, the Dad shaped hole is still very rough around the edges, but I do think it’s getting easier with the passing of time. Like one of those pebbles down at Meadfoot this morning, the constant rhythms of life washing over us is gradually smoothing the jagged hurty spikey bits away.

Here’s to the next six months of building new memories and remembering the old ones.

Ticket booking with First Great Western – step two

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.

So, I trundled over to the trainline site and yes it’s available, if I’m prepared to stump up the booking fee:

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.

Compassion in Healthcare at Torbay Hospital

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?

Monday morning wisdom

Bus graffiti currently on display in Teignmouth, Devon. No more words needed really….

A letter to my niece on her third birthday

Dear Libbie,

I’m writing this the week after you turned three. Three whole years you’ve spent on this planet and what a three years they’ve been. I often use you as one of the reasons I started blogging, so it felt natural to write this as a letter blog post to you, so one day you may read it, but I’m hoping your mummy reads it too because I’ve something to share with her.

Three years you arrived into our lives, the long awaited and much loved first-born grandchild for Grandma and Grandad. My first niece or nephew. You took me by surprise right from day one, I didn’t expect to feel such a connection to you. If I’m honest Libster I was a little worried I’d be a bit rubbish as an aunt, not too interested, there have been so many little people in my life and I’d began to realise that I probably didn’t want my own family, but nothing could prepare me for what I felt for you. It was different to any connection I’ve had before. It was almost animal, when I held you for the first time I knew that I’d do anything for you. Maybe this is what love, true love, really is – an instant, physical, visceral connection easily induced for one so little and helpless, and one who at some subconscious level I know is one of my own.

In some ways I think it’s quite selfish, driven by ego almost. I watch you, your mannerisms, character, willfulness and I see me, a little Georgie! I love that, I love your spirit, your determination, your questioning. I love the fact that you are as happy dressed as a pirate as minnie mouse! I love watching you with your little sister. It’s ace having one, there will no doubt be times when she is a complete pain, she’ll irk you and irritate you but trust me there are few things as comforting in life as knowing you’re never really on your own, you’ve always got your siblings around to rely on if you need to. You’re doing a great job as a big sister, never doubt that!

So what can I share with you Libbie? I’ve listed ten things, there are more, these might not even be the most important things but they’re want came to mind:

1) Never, ever, let people tell you that you can’t do something because you’re a girl. You can do anything that you want to if you work hard enough. You can succeed and achieve if you believe, so don’t listen to people who say no.

2) Never stop asking questions – as you get older people play this trick on you where they suggest asking questions is dumb because it let’s on that you don’t know something. That’s ok, in fact it’s more than ok, it’s essential. People who pretend to have all the answers are just pretending. Even your teachers and your Mum and Dad sometimes.

3) Have fun and play lots – play with the dolls, babies and prams, but play with the lego, football and swords too. Dress up, pretend, make believe and discover. Play often and when you get older make time to play, life can be a lot of fun but sometimes it’s easy to forget that if you work too hard. Don’t take things too seriously.

4) Trust Grandma – if you ever need anything, or want to share something, or don’t know who to talk to then trust Grandma. Your Daddy will tell you a (true) story about Grandma talking to the fish the night you were born which makes her sound quite mad. So, ok, if you need to know about fish ask someone else but anything else ask Grandma.

5) Offer your opinion but don’t forget your manners – life is easier when people work together, sometimes people are shy about offering their opinion, sometimes it can be easier not to. It’s up to you but never forget your manners, and sometimes it helps to ask if someone wants to know what you think before you offer it! Remember also that some people offer their opinion silently by doing, some people communicate differently, there are many people who are more quiet than us and it’s important that we listen to what they have to say.

6) You can be friends with boys and girls – at some point in your life people will suggest that you can’t really be best friends with a boy, don’t worry this probably won’t happen for a few years yet. Never forget Harry and what fun you’ve had together and don’t let anyone tell you not to be friends with boys. It’s an old fashioned thing that some people haven’t let go of yet. Be friends with the people who make you feel best about yourself irrespective of their gender, age, nationality, sexuality – it’s all nonsense!

7) Don’t worry about what to do when you grow up – when I was growing up people were always nagging me to decide what I wanted to be as a grown up, I never knew. Sometimes I wanted to be a Blue Peter presenter, others a skip lorry driver, at times a special education teacher – I never did any of those, and I’m still not sure what to do when I grow up and I’m ten times older than you, so don’t worry about it. You’ll make good decisions when they come along.

8) Respect your Mum and Dad  - Auntie Georgie hasn’t got what it takes to be a parent, it’s really one of the hardest jobs in the world and your Mum and Dad are doing it brilliantly. The strange thing is that most jobs have long periods of training and preparation, people go to university or college, they study and get help to be good at it – there isn’t too much support for being a mummy, no-one gives you a certificate or tells you how well you’re doing. I guess you kind of have to figure it out as you go along, which must be very scary, especially when all of a sudden there are two of you. I am so proud of your Mum, she has worked so hard and she’s one of the bestest mummies out there. Remember that when she frustrates you or tells you no or insists that you sleep all night!

9) Wear hats – the secret to wearing hats is believing that you look good in them Libs. I don’t think you can have too many hats, they are a great talking point and they’re practical too, Grandad would always say that 90% of your heat goes out the top of your head, so wear hats, be confident, believe you look good and other people will believe it too.

10) Be friendly and love freely – this will probably seem a bit obvious. Life is much better if you’re friendly, look out for people, share your friendship and love. As you get older you might find some people aren’t what you hoped they were, some people might let you down, don’t take it personally. It’s not worth worrying about. The strange thing is if you worry too much, and try to protect yourself from being hurt, you miss out on so much in life. Don’t worry about being hurt, or losing friends, be friendly and kind and people will be good back. You’ll hear about lots of nasty and scary things in life but most people are good, and most things are positive.

So there you go some thoughts as you enter your next year. I hope this one is as much fun as the last three.

Lots and lots of love,

Auntie Georgie

xxx

A case of mistaken identity? A matter of life and death

My Dad died four months ago from bile duct cancer, cholangiocarcinoma. Since then I’ve seemed to blog less, and in a way that may be no bad thing, I’ve been doing lots of thinking and reflecting and recharging, but have had less concentration and less inclination to put fingers to keyboard. Then this week a chance conversation on twitter with the lovely @ChrisandHarvey got me thinking, and suitably wound up enough to write this blog post. I’ve followed Chris for a couple of years, he’s a hugely inspirational guy, Dad to his son Harvey, and he works as web manager for Weldmar the hospice in Dorset; go check him out. He retweeted this tweet:

This just left me feeling quite deflated, I wasn’t as philosophical as Mrs Glove and not as quick to just accept that was that. I have blogged on the life changing care that our local hospice, Rowcroft, provided for my Dad and our family in his final days. The Hospice at Home team made an immeasurable difference and I have committed to myself to continue to raise awareness of the excellent work they do, which is sort of where this post comes in.

So what’s the problem? Well luckily for you the CEO at Weldmar, Alison Ryan, wrote an excellent blog post outlining why this is problematic. I’m not going to repeat all that Alison says, you’d be better off going and reading her original post, but in a nutshell she is drawing attention to the fact that too often people in the local area are under the mistaken understanding that hospice care is provided by Macmillan. This matters for two principle reasons, the first is around fundraising, people going onto the streets to raise funds as a thank you, but mistakenly providing them to another incredibly valuable charity. The second reason of course is more pragmatic, if people don’t know who is providing their care and support, then what happens if they need to complain or make a request? Alison draws the brilliant analogy that not all vacuums are hoovers, the same goes for end of life care, not all hospice care is provided by Macmillan, in fact as I understand it in the South West very little (if in fact any?) is. As I understand it this is a common problem faced by many hospices, how do they get the message across that they are providing the service that they do.

Is it a case of overload? It’s a simple fact of life that by the time you encounter support from a hospice then you are already having to deal with some fairly harsh realities, life and death decisions and if our experience is anything normal you are probably quite simply overloaded. Whether you have been dealing with a terminal illness, or spent years living with a medical condition, or indeed if you have just found out that your life is limited, there’s a good chance that you are exhausted from the information and advice overload; you are likely to have met more professionals and individuals than you can even remember, you struggle to remember their name (and trust me it’s awful when you are so grateful and yet can’t remember the name of the person with you) never mind who they work for; you are dealing with so much that who funds the staff supporting you isn’t likely to be at the front of your mind. When Dad was in his final weeks one of the things I did once the hospice staff started visiting us at home was start a list on an empty cereal packet that happened to be in reach, of the names of the people as they arrived – this served two purposes, it meant that I’d be able to check each time I forgot who was upstairs with Dad, and it also meant that we had a list for when we came to thank people afterwards. It’s not like me to be so organised and I don’t know why I did it, but I’m glad I did.

Do we just not like talking money? So, at what point should the hospice be making it clear who funds the service someone is accessing. It could be because we’re terribly British about it, and because we don’t have a great awareness or general literacy around the cost of healthcare, but at no point was the cost of Dad’s end of life care discussed with us. That may well be completely appropriate, and I know that no-one who works for a hospice would want a family availing of their services to worry about the cost. Despite this, I know that my Dad for one was incredibly aware that other people could be benefitting from the support he had as an inpatient at the hospice, in fact I think it was one of the reasons why he wanted to return home. I’m not sure, even now, on the relative costs of providing an inpatient service versus the hospice at home service, I have seem some statistics about what it costs to run them but I’m not sure whether it was cheaper for him to be supported to die at home, I suspect not. 

Anyway, this wasn’t a post particularly about Dad, it was a more general sense of what limits us from discussing, or knowing, the costs of such a service. Maybe we have a long way to go before people are confident or comfortable in discussing the costs of care, I know when I blogged about this before it got a very mixed response in the comments and on twitter.

Is it simply a case of mistaken identity? Unfortunately it seems a bit of a case of David and Goliath, Macmillan are an excellent organisation, much larger than any of the independent hospices across the country providing palliative care. They are also very canny and often pump prime the establishment of services and fund a small number of posts (there’s more in Alison’s blog post about this) and I guess once you are established as a Macmillan Consultant/Nurse/Advisor then you aren’t likely to ever really change in people’s minds who you meet.

Macmillan are also blessed with a very strong brand, and lots of hospices aren’t in my opinion, although I do *love* the new Rowcroft branding! I’m sure that it’s a hard sell to trustees, colleagues and supporters if you want to spend what hard raised money is available on changing branding but I can’t but think it might help in some instances. Short of rebranding and awareness raising, I wonder whether a conversation should be happening at a more strategic level. I’m under no illusion that this blog post is likely to reach more than a handful of people, raising anyone’s awareness is a good thing, but a more straight forward honesty and awareness from Macmillan might be welcomed too, after all we all want the same thing, to provide a quality end of life care service and for people to have greater awareness within that of who is providing their support. If the recent horse meat debacle has taught us anything, perhaps it is that a case of mistaken identity is not one that the public take too kindly too.

So the next time you decide to give to charity or sponsor someone, or are looking for an organisation to raise funds for, then consider your local hospice, they’re likely to need your funding far more than some of the larger organisations.