Last week there was a little storm brewing in my twitter stream. Patient Opinion, who have been an active participant on social media and have been using it to power good for a number of years, were suddenly inundated with concerns for their future. Tim Kelsey, the National Director for Patients and Information at NHS England had given an interview to The Guardian re-launching plans for NHS Care Connect.
Paul Hodgkin, the founding father of Patient Opinion has written an incredibly informative and dignified response, setting out what has happened so far and their plans moving ahead. It’s worth reading that as context to my thoughts…..but do come back!
I should start with a disclaimer. I’m an unashamed Patient Opinion fan girl, I’m invested in them, their work and their ideology. If I was feeling melodramatic I’d tell you that three years ago Patient Opinion changed my life! In fact given there is so much confusion and bold claims and aspirations coming from the NHS England camp, I’ll stick with that statement. I had the privilege of attending an unconference organised by Patient Opinion and heard a descriptor of an angry patient that was a little too close to home. Up until that point I wasn’t aware that I was so angry, but really it’s no surprise. My Dad was diagnosed with cholangiocarcinoma (bile duct cancer) six years ago, and he experienced the very best and some not so great treatment from the NHS. He died last year having lived far longer than anyone expected. This post isn’t about Dad or his care though, it’s about what Patient Opinion did for me.
1. They allowed me to realise that I was angry and hurting
I was angry at life, at cancer, at myself for wasting so much of my teenage years bickering with my Dad. I was angry with the ‘system’ being understaffed, the overworked staff who made mistakes through little fault of their own, the mush that was passed off as food. I was (and if I’m honest probably still am) angry with the junior doctor who with all due respect-ed me (needless to say there was no respect to that statement) and tried to send my Dad home with antibiotics during the swine flu outbreak because he didn’t want Dad spreading his germs having scored high enough on his checklist that he was certain he had swine flu…..one day I’ll write that blog post, safe to say a second opinion found Dad had septicaemia that required two weeks of intravenous antibiotics to shift. Hearing someone outside of the NHS talk about angry patients was like a penny dropping for me; I had to stop being angry and start working to improve things.
2. They convinced me of the value of story
I’m a researcher. I like data. Evidence. Anecdote, story and narrative just doesn’t cut the mustard….or so I thought three years ago. My write up from that conference was quite clear about this:
Stories are everywhere; we all know that they’re a good idea, we know they’re the secret to winning hearts and minds and that without them we can kiss goodbye to any real behavior change. Let’s take that as a given. What I desperately wanted to know, and the nut I failed to crack today but hope to muse over further in the next few months, was how do we use stories and, most importantly, how do we know they’re effective in making changes? This is really a question of how do we apply them to instigate change, not why should we use them, or whether they are valid….
Except what Patient Opinion are able to evidence is *real* change. A quick click here will take you to their website where you can transparently see the changes made as a result of the stories shared. Evidence not anecdote.
3. They inspired me to share my story
One of the biggest challenges of cholangiocarcinoma is how rare it is (1,000 new cases 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). That means with all the will in the world the NHS isn’t too familiar with it; we were exceptionally lucky that my Dad lived an hour or so from our regional specialist at Derriford, but there aren’t many people who know an awful lot about it. There certainly isn’t much information online about it, relative to most cancers or illnesses anyhow. I started blogging in earnest after that Patient Opinion conference because it felt like some small action I could take, to share my experience and hopefully provide something of use to other people – something I’ve had repeatedly confirmed in recent months. I doubt I’d have done that if it wasn’t for Patient Opinion and the catalyst they provided, for us all to work together to improve things.
4. They engage(d) me
The thing is Patient Opinion is a social enterprise, and they really take the social element to heart. They’re not a feedback mechanism per se, they’re not a bunch of faceless bureaucrats trouble shooting the NHS, they’re way more personal and social than that. A quick scan of the Care Connect NHS twitter feed will reveal absolutely zero of their 51 tweets or RTs being from anyone except someone related to themselves or their pilot sites. That’s 51 tweets in 4 months by the way, and part of the rationale for the pilot is to test multiple mechanisms for engagement! It must be hard to have to field so much confusion and energy (positive and negative) following one press article….and yet Patient Opinion haven’t stopped fielding it, have responded to tweets and have blogged – Care Connect have posted one bland statement and RT’d Tim Kelsey:
Patient Opinion lives and breathes it’s punters. In my experience it’s like a virtual family that all are welcome to join (or not if you’d rather). It’s social, predominantly social. They’ve been on twitter a lot longer admittedly, but 18k tweets ahead of Care Connect NHS and a truly engaged approach suggests that maybe Care Connect NHS should be listening to Patient Opinion and its customers and supporters, rather than talking. Patient Opinion were the first people to truly change the way that feedback for the NHS was collected, and have steadfastly stuck to their values. They’ve been co-productive and patient centred since 2005, way before it became fashionable or the NHS caught up. They have done the ground work, they have systems and customers in place. It baffles me as to why NHS England would seek to replicate or duplicate that for themselves instead of investing in systems that work.
5. They travelled a journey with me
The most important thing that Patient Opinion did went way beyond what any feedback mechanism could or should. I felt like Patient Opinion travelled a journey with me. I felt like I had a conduit for my feedback if I needed it, and an ally for my attempts to improve things. I seriously hope that Tim Kelsey and his colleagues do what they can to learn from Patient Opinion, and do all they can not to undermine them and their sustainability. Life is confusing enough when you’re attempting to navigate the NHS, the work from Patient Opinion over the last eight years to build their brand, profile, model and approach is more valuable than we probably realise, the last thing anyone needs is confusion about how or where to feed back or feed forward. I’m really looking forward to some clarity on this.
Waking today I remembered that twelve months ago, the 29th November, was an equally drab and grey November morning. Not too much different to any other autumn morning when the sun stays at half light as though its too apathetic to break through the clouds. It suited me, felt like an honest reflection of my mood as it was the day of Dad’s funeral. Two weeks had passed since he died, two long and short weeks, not dissimilar to how time has passed since – so fast it feels like a lifetime ago, and so slow that it’s as real as yesterday. In that fortnight I had spent many hours ruminating on giving his eulogy, something that felt like a huge privilege and a huge responsibility in equal measure.
1. Ask permission before it’s too late
I only asked Dad if I could give his euology in the last couple weeks before he died. It’s no exaggeration to say I’d been thinking about it for years but I was slightly anxious about asking in case he said no! My Dad was a complete paradox of traditional Lincolnshire stock, but also the proudest Dad on the planet, so it could go either way. In the event he started off ambivalent What do I care I’m not going to be around to worry, and ended up all behind it, telling me to make sure I didn’t go on too long (he knows me well) and also saying he hoped it’d appear on my blog!! This conversation has brought me much comfort over the last twelve months, the confidence he had in me to do a good job, but also in his acceptance, indeed his enthusiasm for my blogging.
2. Make sure family members know about that discussion
Pretty much immediately after Dad died we set to discussing his send off. The first time I mentioned me giving his eulogy it’s fair to say my Mum and siblings were lukewarm to the idea. No-one objected outright, but no-one was exactly brimming with enthusiasm either. This threw me, then upset me and eventually made sense. It wasn’t that they doubted my ability to do a good job (although that’s exactly what I heard and interpreted at first), it was partly about a concern that it would be too hard for me, and partly a concern that it would be too hard for other people and it would be better that someone more removed did it.
3. Start writing it as soon as possible
In the end I did give Dad’s eulogy, we spent hours crafting it, luckily Dad had made some notes about his early years before he met Mum which made it easier to talk intelligibly about that time. Google also came into it’s own when checking out the passage that his first naval trip had taken. We gathered stories and reminisced for hours. Mum and I played with words, perfecting and perfecting and were almost at a danger of over perfecting.
The priest that came to discuss Dad’s funeral with Mum and I was hugely supportive of me giving the eulogy, stressed how it’s always good if someone who knows the person is able to share a sense of personal; that helped a lot, boosted my fragile confidence about the whole thing. The other thing that boosted that belief was the lovely twittersphere and I am so grateful for those who reached out. I had slowly returned to twitter after Dad died having been very sporadic for a week or two; the advice that stuck with me was from Andrea Sutcliffe:
So, I rehearsed. I read it out loud and I read it in my head.
I am perfectly used to speaking to groups of strangers, rooms full of them. Less used to talking to family and friends, especially on such occasions. I remember repeating slow down and breathe in my head in the hymn before I had to get up. In fact I remember repeating it on loop in the days that preceded Dad’s funeral, I was on a short wick and felt like I was inpatient with everything and everyone. I was completely hypersensitive, everything illicited a stronger reaction, good and bad. What this meant on the day was that every emotion was magnified, including nerves.
Luckily, we had the logistics sorted, I had a printed copy of Dad’s eulogy, double spaced with a few stars scribbled on where I needed to breathe and take a pause. I’d rehearsed enough to know the two points where I was at highest risk of cracking up – the point where I mentioned my sister’s best mate, Dad’s honorary third daughter; and the point where I insisted that Dad hadn’t lost his fight with cancer (I really need to blog about that analogy some time). We also had a back up plan (Bobby would have been proud that we were that well prepared), my brother in law had a copy in his pocket and had promised he’d finish it off or do it if I didn’t feel able to.
5. Remember that everyone there is with you, not waiting for you to fail
The climax to this was actually much better than I thought. A calm came over me as I stood at that lectern and looked at the sea of faces in front of me. I was so proud that the church was full, those from the cadet force were in full uniform, something that made my heart swell as I thought about how proud Dad would have been. My gorgeous, lovely, ever supportive PA from work was in the audience and I spotted her in the sea of faces before I started talking and that made me feel much calmer. I couldn’t look at the front row, at my nearest and dearest although my Mum was the definition of serene and dignified, I wasn’t sure I could handle the anticipation and the pain. I took a deep breath, gathered my thoughts and started.
It went well.
On reflection I’m sure I could have been slower, allowed more time after the laughs (I’d not anticipated them, not at a funeral), almost certainly should have made more eye contact, but the stakes were high and I couldn’t risk that. I didn’t crack up giving Dad’s eulogy, I channeled Dad’s stoicism and held it together until back in my seat. That’s when the nerves really kicked in, the hands were shaking and the sobs rattling around in the back of my throat.
It was done though and I felt an immense relief.
All good researchers tell you that you measurement and feedback is key. I felt humbled at the number of people who made a point of congratulating me after the funeral, the biggest compliments were those that said it was exactly as Dad would have wanted, and we’d captured his essence perfectly. A year on as I sit thinking of Dad, thinking of that day, remembering the love that was shared with us, in words, in actions, in company, it feels right. I’m so glad that I risked giving Dad’s eulogy, that I spent the hours perfecting it, that I asked him and got his support. They’re only words after all but they’re probably the most important words I’ve ever written.
If you’d like to read Dad’s eulogy it’s available here.
It’s twelve months, one year, 365 days since my Dad died.
It doesn’t feel real and yet I’ve developed a low level awareness that’s constantly there.
It feels like yesterday but it also feels much longer than a year.
If there is one thing that I can emphatically say I’ve learnt over the last year, it’s how contradictory grief is. It’s such a paradigm, I’d not have thought before that a rational person could experience such swift changes of mood, of happiness straight to joy, and back again. Brought on by a memory, a smell, the sound of a distant laugh, visiting a place shared before, or the ache that comes from a thought of ‘can’t wait to tell Dad that’ and the sinking realisation that’s not to be.
I guess the reality is grief isn’t rational, and any of us living with it, in it, aren’t either. Not sure how many people get through life without experiencing some loss or grief, for themselves and loves or lives lost, if not for someone else….so guess the reality is that we’re all irrational at times, some of us more than others. I can live with that. In a world where we’re geared away from showing true vulnerability, where being irrational is considered an unhealthy state, it’s good to take time to realise that we’re all on a rationality spectrum all the time, and yes grief intensifies your trip up and down that spectrum some what. I asked Oxblood & Co if I could borrow their doodle for this post (above from instagram) and Adam astutely observed that ‘It’s not the best mood to be in, when the feeling comes back it’s great…like when your arm is asleep’ – aint that the truth! I’ve had quite a few times when my arm (insert head/heart) has been numb and asleep over the last twelve months, but when the pins and needles wear off it’s like there’s a renewed energy to appreciate life.
It has taken me most of the week to try and find an appropriate photo or image to illustrate the last year, and grief in general. You get lots of dandelion clocks, which are lovely, but far too whimsical for me. I drew a blank and decided this was a task too far until mindlessly looking at the photos on my phone and tripping over this video I took on Remembrance Sunday. I’d taken my parent’s dog down to the beach to clear the cobwebs and do some remembering of my own. This video is the closest I can come to illustrating grief:
That’s exactly what it feels like for me. You’re running headlong into life, determined to make it happen and feel again. Then before you know it you’re heading back in the opposite direction. One step forward, two steps back, but still with time to enjoy the sun and the beach. What I didn’t manage to capture on the video was the sea sneaking up and catching us both unawares and soaking our toes.
Over the last year I’ve blogged about Life after Bobby; a quick scan of those posts reveals some of the highs and lows. I feel so proud of my Mum and siblings, and quietly of myself, for how we’ve coped/handled/lived/loved (as my autocorrect keeps telling me) Dad’s death. I know none of us could have done it without support, and for me that support has come from some unexpected places. To each and every one of you who has taken the time to read this blog, to comment, to tweet me or DM me, to drop me an email, who sent flowers or cards a year ago, the hugs, the cake, the space to just talk and share – please know that you’ll always have my gratitude.
For those who have encouraged me to keep blogging, to share my life and loss of Dad, a special thank you. There’s no rule book about blogging death or loss (or about trying to find your way and meaning), I’ve done what I can to share openly and authentically and to those who read and encourage, thank you, it’s more appreciated than you know.
Here’s to the next year, to remembering Bobby J and looking ahead and keeping working at embodying his one mantra in life, which was to ‘let it go’. Not there yet, but definitely on the way!
I started writing this on a train to Bath where I’ve the absolute pleasure of spending the night with Rich Watts (my virtual twin) and his family, before heading into Bristol bright and early tomorrow for TEDxBristol. I’m really looking forward to tomorrow which will allow me to spend a whole day focusing on failure, you can check out the schedule here and see what you’re missing. Organised by the phenomenally talented Nat Al Tahhan with a volunteer crew, this event promises to be a highlight in my year.
I don’t think we talk enough about failure, I don’t think we’re honest about it and I don’t think we’re very good at learning from it. Sweeping statements I know, but as someone with a background in research and more recently in sector-led improvement and knowledge transfer, it’s all too tempting to get stuck on evidence, what works and good practice. It’s what audiences claim they want, whether it’s the best way to learn or not.
I try to blog something ahead of a day like tomorrow, it’s sort of a prep/homework task I set myself to ensure I’m thinking about it and have my head in a good space before the day. As enjoyable as it is to just turn up, I like to frame my soup of thoughts somewhat. I’d intended to start musing on failure over the weekend as last Friday I had the pleasure of attending Meaning Conference in Brighton. You can read my musings ahead of #MeaningConf Life after Bobby: In search of meaning which unsurprisingly were about life, love, loss and the search for meaning. There’s a little bit about failure in there actually, probably underlining points 7 and 9…especially the thoughts on vulnerability and self doubt.
So where does this leave me ahead of a day of failure? My first thought was that there’s loads I could write about and share: my thoughts on failure; some of my most epic fails; my fear of failure; reframing failure and questioning whether it’s really fail or whether it’s wrong people/place/time; life and death and where meaning fits; and of course how we talk (or don’t talk) about death and whether we subconsciously view death as some sort of failure. I definitely have a blog post brewing about language and cancer, my Dad often talked of fighting cancer when he was being treated for cholangiocarcinoma, but I was at pains to point out that Dad didn’t ‘lose that fight’, in fact I don’t think it’s a great metaphor because it implies if you survive you win the fight and if you die you fail….and yet I don’t think that Dad failed or lost his fight, in fact I was explicit in his eulogy about that:
Dad didn’t lose his battle, or succumb to cancer; he stoically, bravely and steadfastly lived his death as he lived his life, with courage, dignity and a concern for others.
Anyway, as you probably can tell, there’s loads I could blether on about with regards to failure. I thought I’d have a think at the weekend and come up with something. Instead in the midst of Meaning Conference on Friday I saw an email notification whizz across the top right of my screen. This email was from Winston Churchill Memorial Trust. It would contain good news (please come for an interview) or bad news (sorry you failed at the first hurdle). WCMT gives travelling fellowship grants for people to travel overseas to ‘bring knowledge and best practice for the benefit of others in their UK professions and communities’ (see best practice again, no-one wants failure, but I digress). Last year I didn’t apply because I had a full time job and a seriously ill father, but this year (having quit my job a year ago, at the same time as it happens that Dad died) I decided to give it a go and apply for funds.
Eurghhhh, it felt like someone had winded me, a breeze block thrown at the chest maybe. To not make too fine a point about it, it hurt. I found myself physically affected, nothing too major, and certainly it wasn’t beyond my grasp to refocus (luckily on the truly excellent Meaning Conference) but it actually pained me to get that email.
I strongly suspect that there will be people reading this thinking, yeh right, get a grip love. I’ve played those voices in my head ‘what makes you think you should have got the money anyhow’; ‘your idea wasn’t of the most use and who cares about talking about death…what were you thinking’; ‘oh come on, you’re obviously not half as clever/relevant/good/useful/smart as you think you are’ and so on, and so on. I’ve played them on loop most of the weekend.
Thing is I don’t think the odds were that bad, just over 1k applications, over 100 fellowships, that’s a 1 in 10 chance of getting one, so who knows how many they interview but to not even get that far, to fail at the first hurdle, it hurts. This is where the introspection was quite revealing…I think I’ve put myself out there a lot this year, I’ve risked more and been out of my comfort zone a lot, I don’t think it’s the failing itself that hurts in its own right, it’s something I care about failing.
Where I get to is that to apply for funding like that I had to construct a ‘what if’ dream scenario. I had to construct it and allow myself to live in it a little in order to put (what I thought was a good) application in. As with any of these things the thinking didn’t stop there and I’d been building mini scenarios in my head ever since I submitted it. I had great plans and ideas and I think, no scrub that I know, it’s a really important topic. This is work that I believe needs doing, and I screwed up, I failed and that hurts.
The physical hurt stopped fairly soon after, the more I think about it the pain subsides a little, guess its like bruising rather than anything more severe. Just a bit flat, deflated, disappointed and frustrated at myself. As the weekend has gone on the bruise is a little more present, altho I’ll be honest it doesn’t leave me feeling confident or wanting to risk much onto is topic again just yet, don’t want to catch another breeze block until am feeling more recovered.
Guess in the end it all comes down to self belief. I believed in the need for that work, I believed I could have done it well, I believe it’s important….hell I still believe all those things. Maybe I’ll try again next year, maybe I’ll try to crowd fund the money (thanks to Mike Baldwin for that idea), maybe I’ll reframe and reshape and move on. I’m not sure but if nothing else I guess it was a humbling and important reminder ahead of tomorrow….for now I need to focus on getting into TEDxBRS as I managed to leave my ticket in Devon (an unintentional #fail) that I hope I can recover from, I’ll listen attentively, muse some more and see where I get to. Sleep now, fail tomorrow, can’t wait.
Fifty one weeks, four hours and about 15 minutes ago my Dad died. Bobby J let out his last breath, peacefully, at home very much knowing he was loved. I’ve written about his death before. My Dad’s life and death, have provided the lens through which I viewed my own life of late, and challenged by him last summer ‘when are you going to do something about it’, I quit my job and stepped into the unknown.
I’d like to claim that I’ve been on a journey since then, an active search for meaning but the reality is far less purposeful or structured than that. I’ve been meandering through life, taking time to appreciate the little things, travelling and thinking (lots) and generally feeling my way towards some sort of meaning in the last twelve months. What follows are a few thoughts and reflections that may be of interest:
1. Do what works for you
First up, some people love lists, some people hate them! I don’t consider myself to be a particularly structured person and am not renowned for list making, but I do love a list when it comes to blog posts. It appears lots of people don’t. I’m past apologising, formulaic it may be but it works for me, so the lists are staying! Hopefully the next nine thoughts will be slightly more profound!!
2. People are naturally curious, share and ask
I’ve noticed over the last twelve months that people often want to know more, but lots of people are afraid to ask! If I listened to what people told me I’m not sure I’d have blogged about Dad’s death, that was a taboo too far, and yet my web stats show that people are interested, even if they aren’t prepared to say so in public. I’m a massive blogging fan so I’m biased, but if you’re not sure what you can do to connect with others I really would recommend it. I think lots of people are interested and curious and the more you share the easier it is for those connections to be made.
3. How you spend your time is your choice
I’ve been on the road a lot lately, I promised myself I’d spend November at home. It felt important to ground myself in one place for a bit. Then I get seduced by Meaning Conference and found myself in Brighton. I’ll work at the weekend to pick up other things, some opportunities are too good to miss, and it’s incredibly liberating to remember that you really do choose how you spend your time, even if an employer or customer is paying for some of it.
4. Unless you’re a brain surgeon, no-one is likely to die if you stop working after four/eight/ten/twelve hours
Until we get to a point where flexible working really is a reality there’s a good chance that many people will work over their allocated hours. I don’t think that’s a bad thing, regardless whether you’re paid for those hours. I’ve always struggled with work-life balance, since I started working for myself it doesn’t bother me nearly so much. I used to worry I was setting a bad example to my colleagues and staff, now I am embrace it. I’m a night owl, I work into the early hours of the morning irrespective of what is driving it, but I also stop work when I want and nearly always start work later. I have rarely had a meeting before 10am, my 5am starts for trains have been cut to about 1/4 of what they were, I probably work as much as I ever did but half of it I don’t view as work!
5. Good colleagues and good leadership is worth at least half your salary (or more)
Kind of what it says on the tin. Work for yourself and you soon realise a couple of things, one of which is it can be lonely without colleagues, the things I miss the most are my colleagues and some of our customers. The thing I’m grateful for the most is being able to lead myself and not be badly managed. I have taken home much less money this year than last, I’m under much less stress (personally and professionally) and far more aware of what really matters to me…people and experience. I don’t need to earn a lot to survive, having good people to work with, and inspiring people to work alongside is way more important to me than money.
6. People care
Not everyone has the words or means to show or say it in an easily found way, but nearly everyone I’ve met this last year has cared. They might not care about the same things as me, but they do care. If we’re thinking about meaning it’s worth spending some time trying to identify what people care about, especially the ones that get under your skin, if you need to have them in your life then it might be easier to work together or understand them if you figure out what they care about. I’ve also been overwhelmed by how many people care about me, or the same things I care about, there are lots of people out there, it’s just about finding them.
7. Admit when you don’t know and never stop asking questions
That’s it. Hard one to fight the blag urge and to admit you don’t know or don’t have a view about something. Really, really important to say when you don’t know and proudly ask questions. Think life would be much better if more people asked questions instead of just jumping to a view and defending it to the hilt.
8. Connectivity matters – but on your own terms, in your own time
I’ve blogged before about extroverts and introverts and declared myself an off the scale extrovert. I love social, I love people, I love people watching, I love connecting. People are easy for me, but this year has taught me, or reminded me, that I really love time alone too. I need to recharge my batteries, I need time to think, that means I have to say no occasionally, that’s hard but necessary. I have no doubt that connectivity and collaboration are the future, but to do that and perform well in it there are two things I definitely need: sleep and downtime.
9 Fight your inner self doubt and keep yourself open to new ideas
This is related to many of the above points. As human’s I think being vulnerable comes easy, but is uncomfortable for us. We’re all born vulnerable and yet by the time we get to teenagers most of us can’t wait to ‘be independent’. I think this is interlinked with a need to be seen to have all the answers and not admit to having doubt in ourselves or our abilities (or only to admit it to a few chosen friends and close colleagues). Of course the reality is that we’re all living and making it up as we go along, working for yourself makes it much easier to embrace that inner doubt and admit you don’t know. It’s also liberating when no one person is paying your salary, far easier to remain open to new ideas when you don’t have to worry about how they link to targets or business plans or one organisational view.
10. Grief isn’t linear, life isn’t linear
My Dad had cancer for five years before he died, his death wasn’t sudden or unexpected and we thought we were prepared. I don’t know that you can ever really prepare for a death, not completely, however much it’s expected. Almost a year since Dad died I’m fairly certain about one thing, grief isn’t linear. I’ve blogged before about missing Dad and most days I’m ok with it, some days I physically feel a loss but the thing I’m most surprised about is how random it is. Grief hits you like waves, fine one minute, stopped in your tracks by a smell, sound, person the next. It’s powerful. I’m beginning to think life is the same, if you let it, but that’s a post for another time.
If you got to the end of this post thank you; as ever your thoughts, contributions and musings on meaning are very welcome. I’ll try and blog again after Meaning Conference with some more focused thoughts.
I’m the first to admit that when it comes to social media there are no rules, just preferences. However I’m so disappointed to see the same mistake/missed opportunity/confusion two years running by people who, as communications professionals, I think should know better @LGAComms that I’m venting here.
My ideal would be that they see this, perhaps acknowledge it and better still make sure they don’t do it again!!! All of that said, the disclaimer stands, I’m not the arbiter of good social media practices, this is just my view, end of.
So what am I venting about? Hashtags, that’s what. I think there are only really two rules when it comes to hashtags:
1) Make them short and relevant
2) Pick one and stick to it.
Last year I blogged after the National Children and Adult Services Conference about how it appeared that #socialcare was finally getting on board with the potential of social media. This year it appears to be even more so as there are 123 tweeps attending next week according to the delegate list, you can access a twitter list of all of them here (and let me know if you’re missing and would like adding).
So what is the problem I hear you ask? #NCASC is a short and relevant hashtag, indeed it was even publicised early (first appearance circa June 2013) and it’s obvious. Great, better still people had started to use it. Then last week the confusion starts and the Local Government Association (LGA) decide that they’ll go with #NCASC13.
2) Why has this happened again? Last year the opening slide and programme each had different hashtags, yep you’ve guessed it #NCASC and #NCASC12… resulting in lots of confusion, back channel grumbles and missed opportunities to connect and make the most of the opportunity to engage people (especially those not in the room) with the conversations at conference.
If this was some small, locally organised get together I’d forgive the error, but two years running, from an organisation that is meant to represent local government, seriously tweeps, is time to get the act together!!
PS: LGAComms confirmed this evening that the official hashtag is #NCASC13 and that they’ll share that with partners. It appears that emails were going out as late as Friday still using #NCASC so hopefully someone will take the time to find and replace all the instances and also to let exhibitors, delegates and speakers know. I hope not many exhibitors have bothered to incorporate the hashtag into their marketing efforts or they might be slightly non plussed, but for now it is good to have clarity as to what should be used from here on in.
Can also confirm that next year’s will be #NCASC14 …heard it hear first, if anyone is still using twitter by then of course.
One of the objectives of Hospice Care Week is to raise people’s awareness of the work that hospices do. There are many myths and misconceptions about hospice care that could do with being busted:
1. That hospices are just where you go to die and are all about death – of course death is part of it but they are very much about living a good life before having a good death, and the support doesn’t end when the person dies
2. That hospices are only for people with cancer – hospice care is for anyone with a life limiting or terminal illness, and their family and friends, the support provided is eclectic and holistic
3. That hospices are provided by Macmillan cancer – of course some hospices are provided by Macmillan but there are many independent hospices and the support provided in my local area (Devon) is not linked to Macmillan
4. That hospices are paid for by the NHS – some hospices are funded by the NHS but the vast majority rely on fundraising to cover their costs, with only a small proportion of funding from the NHS. Despite that hospice care is always free of charge.
So why am I blogging (incidentally from the highest Starbucks in Canada) and claiming it’s relevant to Hospice Care Week. Last year my Dad spent two weeks in our local hospice, Rowcroft, before returning home where we were provided with support by their fantastic Hospice at Home team that allowed him to die at home. You can read about our experience on the Rowcroft website.
Eleven months later there is rarely a day goes past when I don’t actively think of those amazing staff and the fantastic support that we were provided as a family. Since then I have heard many stories of people whose relatives had less than ideal deaths, for whom the support was not available as it was to us. Nearly every time for a short period I feel guilty when I hear one of these stories, I feel like I should hide away Dad’s and our experience for fear of rubbing people’s noses in it. Then I give myself a talking to and usually return to the same point, that we were incredibly fortunate to have such an empowering experience of hospice care, and that is important for people to hear. I also think I have a responsibility to ensure that people understand that hospices are about life not death, and that they need our support to raise awareness and cash, so that even more people can share the experience that we did.
Dad was ill for five years with cholangiocarcinoma before he died. His health fluctuated wildly throughout that time and we all developed our own coping strategies. I had many, but the hardest thing I found was balancing work and family. I travelled a lot for work and it got to the point where I always drove to the train station so that my car was waiting for me if I had for return early and get to the hospital; I would try and ensure that I wasn’t away at weekends if I’d been away in the week so I could visit my parents; when it came to holidays I agonised, knowing I was away for work if anything went wrong was always far easier than being away for my self!!
Fate seemed to play its part too, I can remember at least three weddings I travelled to in that period (two in Wales and one in Ireland) and on each occasion Dad was admitted to hospital, either with neutropenic sepsis or needing a blood transfusion. Towards the end of his life Dad’s trips to hospital became more frequent; my last function before quitting my job last year was NCASC and again I remember wandering Eastbourne promenade on the phone to Mum filling me in with the details of his latest admission and me having to try and make the call remotely about whether to leave early and return home. I didn’t, and later that week Dad was discharged home where he stayed another week or so before being admitted to the hospice.
I have done *a lot* of travelling in the last eleven months. To some extent I think I’m catching up on lost time, I’ve always loved travel and it had been missing its usual ease and carefree spirit the last few years. I still very much loved travel, don’t get my wrong, and I had one amazing holiday to the Maldives about half way through that kept me going in the dark times, remembering the sun and beaches, but nothing of travel while Dad was ill came close to the feeling of freedom and adventure I now have. Every time I walk to Newton Abbot train station, or take a work trip away, or plan a curry adventure, or manage as I have the last couple weeks to see friends in the USA and attend a brilliant conference in Canada, without worry I remember the support from Rowcroft. Not just the support while Dad was alive, or immediately after his death, but the ongoing relationship and support provided. It is ten times easier for me to travel away knowing that my Mum isn’t alone with her thoughts, that she has new friends and contacts through the Rowcroft Choir and through her volunteering at the hospice (and it also helps massively that my little sister and family have moved back to Torquay).
I too have got a lot from being able to share our experience, not just with you guys via this blog, but also with Rowcroft, who have shared our experience to raise awareness on their website and in a newsletter. Giles (the CEO), Rachel and other staff at Rowcroft have also have been very open to feedback and suggestions. It’s incredibly humbling to know that there is some small way in which we can give something back. So I hope by writing this post a handful more people will think twice about what their local hospice does, that you’ll hear that the support doesn’t stop at death, that in fact it is about so much more than that.
Hospices are about living and that’s something that’s common to all of us. I sincerely hope that you and your family never have to experience hospice care, but I also hope that if you do, the support is available to you. So check out your local hospice this Hospice Care Week and maybe see what you can do to help, give time or money or just talk about them and raise awareness amongst your family and friends, I bet they do far more than you realise.
Pick what you’re interested in…
- @jaxrafferty was checking in before disappearing for some shut eye, you got lucky ;) @mattplaysdrum @NotSureJustYet tweeted 6 hours ago
- @mattplaysdrum hi Matt, sorry to hear about yr Dad....gd luck on Fri, post @jaxrafferty mentioned wp.me/pOLqj-Gw cc @NotSureJustYet tweeted 6 hours ago
- Postcards To Josh Postcards to Josh was the brainwave of his good friend Victoria Trow. Victoria cr pinterest.com/pin/3575436578… tweeted 7 hours ago
- @clare_horton will give you a shout before I visit and maybe we could grab coffee together if you've not been already? tweeted 8 hours ago
- @clare_horton now that is a *great* question :-D Don't know but will have to find out... tweeted 8 hours ago
- @PublicInvolve @trishgreenhalgh I'd be disappointed if he knew tbh!! My post from yday might explain why a little georgejulian.co.uk/?p=467 tweeted 8 hours ago
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