18 months and a day, 78 weeks, 13 thousand one hundred and twenty eight hours, that’s how long it is since Dad died.
There have been 547 sun sets and 547 sun rises since Dad left us. Well, true to form, this isn’t an easy calculation to make because technically speaking I think it should be 548 sun rises because Dad died just before sun rise, kind of apt really for a man who spent most of his working life as a postie, awake way before dawn, at 4am, best part of the day he used to say before everyone else woke up.
This week is Dying Matters week and I set myself the challenge to blog each day, so it seemed fitting to spend some time thinking about Dad now the 18 month anniversary has been and gone (not that it’s really an anniversary unless you choose to make it so). One of the questions I heard asked a lot this week was How would you like to be remembered? The amazing Kate Granger who I met on Monday, may have mentioned that a few times, says that she wants to be remembered for making the NHS more person-centred, how awesome is that, and she will be.
Stephen Sutton died this week, the 19 year old who decided to turn his cancer into a fundraising opportunity, and spent what time he had making other people’s lives better. An sharing the news of his death his mom said ‘My heart is bursting with pride but breaking with pain….we all know he will never be forgotten, his spirit will live on, in all that he achieved and shared with so many‘.
I remember having a similar conversation with Dad about how he’d like to be remembered, and him shrugging the question off with a swift ‘doesn’t bother me how I’m remembered I’ll not be here, that’s up to you lot‘, ever the pragmatist. Some of you may know I have a moderate obsession with memorial benches, I absolutely love them and run a blog (that needs updating) of photographs of them and their plaques. I often hunt them down and spend a few minutes imagining those they remember from the little tiny clues left in the dedications. When Dad died I remember talking about a memorial bench with Mum, but we both agreed it didn’t really fit him, he never sat still, was a complete jiffle bum and always on the go.
One thing that struck me when Dad died was the number of stories told of what a difference he made to people. In fact the one advantage of having a terminal illness is that, on occasion, you can hear these stories yourself! Dad was given some award at the annual dinner by the Army Cadets once he’d retired due to ill health, and he was proud as punch not with the retirement gift or award, but because one of the younger adult instructors came up to speak with him and Mum (early enough into the evening that it wasn’t the beer speaking) to say that Dad had been one of the few people who really showed an interest in him as a teenager, and he was confident he’d have got into serious trouble and have a very different life now, if it wasn’t for him. When we shared that Dad had died on facebook there were more stories shared, people got in touch and left messages full of happy memories of camp, drill evenings, uniforms and parades. But there were also a number of stories about the difference that Dad had made; it would appear that it wasn’t a one off, in fact it would seem his speciality was kids who weren’t that academically able who were walking a very fine line between playful trouble making and potential criminal record. It would appear that the combination of Dad’s discipline, interest, and personal narrative* was enough to see many of these lads right (*Dad didn’t enjoy school, severely dyslexic he didn’t learn to read and write till he was an adult, and joining the Navy gave him the escape he felt he needed).
Every time I’ve heard the ‘How would you like to be remembered?’ question this week I’ve found myself thinking similar to Dad’s answer. If I’m completely honest, in death, as in life, I’m not sure I’ll be too bothered what people think or remember, what matters to me is that I will be most happy myself if I think I’ve made some positive difference to someone’s life, in some small way. To that end I have decided to shave my head to raise funds for two causes very close to my heart, Rowcroft Hospice (who supported Dad, and continue to support our family) and JusticeforLB (the campaign set up by Connor Sparrowhawk’s family to raise awareness and funds to cover legal costs for his inquest).
Dad died a wonderful death at home in November 2012, four months later Connor was admitted to hospital for assessment and treatment, but he drowned in a bath 107 days later on 4 July 2013. I consider ourselves immensely lucky to have had such a good experience of Dad’s death, and I feel an immense injustice/pain/anger/there are no right words for Connor’s family and friends. The differences between our respective families experiences of death (coming to terms with it, preparing for it and support received after it) could not be more stark.
In a small attempt to make a positive difference for others facing the death of a loved one in our local area (South Devon), and to support those trying to come to terms with Connor’s death, get answers and improve treatment for people with learning disabilities, I will be shaving my head! I am sure I’ll blog about this again (at the moment I’m still in denial) but I hope that this act will raise awareness and money, for these two amazing causes. There is a catch however, I will only shave my hair off, if I raise £1,500 by June 20th, so if you can spare a couple quid, please donate. If you can’t, don’t worry, but please spread the word.
I wanted to write a post a day for Dying Matters week, about death and dying and life and grief and anything else that’s relevant really, but I’ll be honest I found yesterday quite an emotionally punishing day. Not sure why exactly, maybe it was because it was the half way point of a week dedicated to death, maybe because it was the 8 year anniversary of a family friend’s death, maybe because the news was shared yesterday that the amazing Stephen Sutton had died, maybe because I’d travelled lots and slept badly in the preceding days. Maybe because today is an anniversary of sorts (more on that tomorrow), maybe because I blogged yesterday about animal deaths and spent most of the evening looking at Mogs dreading when the day comes for him. Who knows, not sure it really matters, but I wanted to take a moment to acknowledge that even those of us who like (yeh really) to talk about death and dying, can find ourselves swamped by the reality of it at times.
So, I was delighted when I remembered that Annie C had offered at the weekend (well accepted the challenge really) to guest blog for me today. I’ve been blogging for a number of years and have never had a guest post, so I’m quite excited about this and am looking forward to pimping it far and wide. Annie, or Anne (depending whether you first met on or off line – she’ll always be Annie C to me) is a great tweep, a nurse who works in informatics (which means ensuring information gets used in health – I think), a wife and a mother, who shares her life with a coop of chickens, and the beautiful old man that is Henry. This is what Annie has to say:
I may be wrong but today life feels like an old cassette tape…. you know that brown magnetic tape, rolling along on little rollers…. You used to be able to buy them in different time lengths – 60 minutes, 45 minutes and 120 minutes but the 120 ones, although more expensive, seemed to get snarled up more readily – in my experience 45 minutes was the optimal length – just long enough to do a bootleg version of the top 20 off Radio 1.
But we can’t choose the length of our lives and sometimes the tape gets snarled up and stops working in a much shorter time than we expect. We might get warning signs, on tapes the music slows, distorts and sometimes needs a pencil to roll it back into the cassette. Sometimes I also used to patch up a broken tape with a tiny piece of sellotape and although there would be a little gap in the music, careful love and attention would make it serviceable again; so many parallels with life and health and well-being. We just don’t know whether we have a 60, 45 or 120 minute tape.
But on my old cassette player there was a pause button. I’ve been thinking that I’m probably on a 45 minute length cassette for my life. Having Diabetes means that there is a higher risk I will die younger. I remember once walking across a car park with an eminent surgeon who when I told him I had type 1 diabetes looked at me and said – ‘Oh no more than 60 then’ – I was bemused and slightly shocked and still hope to prove him wrong. He was a sweetheart but I was only about 30 at the time and it seemed like a slightly shocking thing to say but I guess he was much older than me – maybe 30 years – and care has improved greatly in my lifetime.
So it’s time to press down the pause button and think about how much tape is left and what I what the final tunes to be on the tape. My husband and I have chatted about some things, like funerals and bits and pieces but not the really serious stuff and it is time. We lost a great friend recently, he died suddenly and shockingly. We never had the chance to say goodbye. I never had the chance to tell him what a great man I thought he was. We don’t always have the chance to plan but if we do I want it to be right for me.
So I resolve to press down ‘Pause’ button for a while, the top 20 can wait, it will still be there when I come back, and to have the conversation with hubby. I will tell him I love him and how I want a good death to be for me and if I don’t have the luxury of the choice how I want them to mark my passing, with joy and love of life.
Please leave comments and thoughts on Annie’s post, whenever I’m asked I always say I blog to build discussion, think that is especially important this week, and I’d love you to join this conversation with us. Thank you and massive thanks to Annie C.
Last December my Mum had surgery, nothing too major but major enough to require an overnight in hospital (two as it turned out) and a couple months recuperation, including two and a bit weeks staying at mine. My Mum is, on the whole, very healthy but there have been a few causes for concern over the years, again nothing too major, but enough to just sit under the surface and mean I take nothing for granted. My Dad was the healthiest man I knew before he was diagnosed with cancer! Anyhow Mum was in hospital and I knew my sister was down as next of kin as I’d been travelling a lot and she lived closer to Mum and the hospital. I’d taken Mum into hospital on the day of her surgery, waited until she was called down to theatre, and headed home for a frantic couple hours of avoidance technique until we heard that she was in recovery. I visited her that evening, spent a couple hours and swung by my sister’s on the way home. All good.
The next morning I was awoken by a phone call just before 7am. I learnt over the years that Dad was sick that any phone call before about 11am is never good. Calls before about 8am tend to be bad news looming or in need of immediate intervention, calls before 7am are always bad news! My sister was hysterical, for the first few seconds I could just hear heavy breathing and these massive sobs, the sort where you can barely catch your breath because your heart is pounding so fast your rib cage feels like it will explode, those sorts of sobs. I wasn’t even sure who it was to start with but my immediate thought, as soon as my brain whirred into gear was Mum, and shit, why was Abi hysterical.
She couldn’t speak and so I checked if it was her and asked if Mum was ok, I could barely make sense of it but there was a yes through the sobs. Then what she said stopped me in my tracks again, all I could hear was ‘sob, eee-be, sob, died, sob, can you help me, sob’. My second niece, Phoebe, was less than 18 months old at the time. Again completely healthy but for a millisecond my brain kicked into, shit, Phoebe died. More sobs, tears, and me holding my breath until Abi said more. I just kept reassuring her that whatever happened it would be ok, and to take a breath and try tell me again. All of this probably took about 90secs but as I type it now I feel it in slo-mo again, I’ve replayed it in my brain a few times. It turned out that Phoebe hadn’t died, Nuby, one of their dogs (who Abi so eloquently described as her first baby, who taught her how to be a mother, gulp) had died in her sleep that morning.
Abi was calling to let me know and to ask me to take Libbie (number one niece, 3yrs old at the time) to school that morning. Fast forward half hour or so and it was with some trepidation that I walked up their drive and into the house, Abi was doing her best to be stoic and not scare the girls. I needn’t have worried, as soon as I arrived Libbie pipes up with ‘hello Auntie Georgie, come and see my Nuby doggy, she died‘. Just like that, completely matter of fact, she grabs my hand and takes me to see Nuby wrapped in a blanket in her bed. Libbie had absolutely zero qualms about what had happened ‘my Mummy is sad because she’ll miss her, but she’s gone to be a star with Grandad’.
I don’t know how you explain to a three year old that their dog has died, I don’t know how you explain to a two year old that their Grandad has died, or their great-Grandad months before that. I don’t envy my sister and brother-in-law at all but they’ve obviously got something right, because I think Libbie could teach us all a thing or two about discussing death!
Fast forward to today and a photo on instagram stopped me in my tracks.
OK I’ll be honest, I cried (although anyone whose read my posts before will know that’s not unheard of). Sticks was the most beautiful, funny, charismatic little kid, literally. A baby goat who battled to survive from the off, but who was nurtured to life by Farmer Meg and Neil. He had a short, but seemingly very content life documented on instagram and I can honestly say he made my days a little brighter, and judging by the comments left, those of many others too.
Meg and Neil are braver than most of us, choosing to run a small-holding and face the very real and authentic ups and downs, or ebbs and flows of death and life, on a daily basis. As farmers it’s their way of life, and yet seemingly we’re turning into a society where even farming and farmers, are feeling forced to suppress the reality of what that looks and feels like. Meg wrote an excellent blog post about this at the start of the year that is well worth a look (I borrowed this blog title directly from it):
The shadowy places that this voyage has taken me to are more dark than most things I’ve experienced, but the light in my life shines brighter than it ever has. The victories are certainly sweeter but the defeats feel like they will break your soul in half. The ebb and flow of death and life here is so real and extreme and I feel it truly mirrors my Gemini temperament.
She goes on to talk about the pressure to present a rosy perspective, the funny anecdotes and romantic images that the online audience crave. Oddly the reason I follow Meg, and seemingly more and more farmers on Instagram, is because they provide a pictorial map of the real ebbs and flow of life and death. I’m beginning to wonder if that is part of their appeal for me, in a society that is ever sanitised, it is unusual for this pic to be seen, but it’s very powerful juxtaposed against one of bunting, or cake, or fonts, or train stations (just my choice of people to follow). I am grateful to those smallholders who share the ups and downs on social media, whether that’s instagram, twitter, blogs or facebook.
Life is made of shadow and light, we can not appreciate one without the other. Life does go on, we don’t need to forget and whether the pain eases or we just get better at dealing with it I don’t know, but I am thankful to have known Nuby and Sticks, and I’m grateful to Abi and Steve, Megs and Neil for sharing their lives, and deaths, with me.
Last night I had the absolute honour to attend the Dying Matters annual lecture at the Royal College of Physicians. The theme You Only Die Once: Kate Granger’s story. Kate sent me a DM asking if I’d like to come a couple months ago, and I can honestly say I wandered around with a grin on my face for days.
It’s hard enough to explain to (some) people in my life the appeal of twitter, social media and all these people I’ve met on the internet. That’s doubly hard when I start babbling about Kate, it usually goes something like:
Me: Yeh, Kate, she’s a doctor, whose dying, and she’s amazing and she blogs and has written books about her experience
Person: Uhhhh huh, about dying?
Me: Yeh, you should read her books, they’re ace. I read them when Dad was dying.
Person: What, when you knew your Dad was gonna die you mean?
Me: No, literally when he was dying, I saved them up for when I knew I was gonna feel shit and cry lots anyway, but they were ace, really made me laugh and feel so much better about blogging our experience.
If you don’t know who Kate Granger is, you really should. Don’t worry I’m not going to go all Death Boot-Camp on ya, you don’t have to follow Kate’s story, I know some of you will be uncomfortable with her openness to discuss her death, but if you don’t know of her, at least check out her blog or her books (in fact why not buy one all profits to Yorkshire Cancer Centre).
Last year I wrote a blog post about the need to re-learn the art of dying, a phrase stolen from Kate herself. As someone who has spent a chunk of time surrounded by illness and death in the last five years, Kate’s willingness and openness to share her experience is like a tonic, doubly so because she herself is medically trained and in my experience many medics have as much difficulty discussing death as the rest of society seemingly do. Yesterday’s blog tried to suggest that the taboo isn’t as real as we’d be had to believe, today I guess I’m questioning that a tiny bit, but mostly as a result of some of the stories I heard last night. Stories of oncologists unable to talk of death, instead using the code phrase ‘when you’re very poorly’, hospitals uncomfortable having Dying Matters stands in public view, families who never come to speak out loud of the fact their relative is dying, often important conversations scrabbled and caught in the last few hours of someone’s life.
As much as I’m optimistic that we could, maybe some of us are, more open and comfortable than this, and as much as I acknowledge that last night was an audience full of the death brigade so a very skewed audience to hear and share these experiences (although one person was still desperately uncomfortable when I mentioned LB’s death in private conversation later – I guess negligence may be the last bastion even for those comfortable talking death – although several weren’t). Anyway, I digress, I guess last night reminded me of many of our own experiences as my Dad and my Grandad were dying.
We had some very similar experiences. I don’t think Dad’s oncologist ever mentioned death or dying and in the end we (my amazing Mum) had to self-refer to the hospice team once Dad, and we, thought he was past the point of treatment. The difficult balance between remaining positive and being realistic was also discussed, another experience that will stay with me for a long time, desperately not wanting Dad to think we were giving up on him, but wanting us all to be honest. Maybe, it’s exactly that which leads to oncologist to avoid the D word, maybe they can’t face their inability to cure someone, or maybe they just don’t want their patients to think they’re giving up on them.
Not sure, will muse further, but for what it’s worth my initial thoughts are that if as a medic you can’t mention and discuss death and dying then it leaves patients (and their family members) feeling like they’re failing you. Worst possible outcome for someone facing death is to feel they’re letting people down, especially medics who should be supporting them to plan for and have a good death. Speaking of which, last night was the world premiere of a new film made for Dying Matters by Kate and Chris, her amazing husband, who I get the sense has been pulled into a whirlwind of death, dying, tweeting perhaps slightly against his better judgement, or at least to support the woman he loves most in the world to have the life (and death) she wants. No mean feat in itself.
Kate and Chris recorded a film for Dying Matters. It made me cry, but that’s no bad thing. It’s a beautifully honest account of what they face and how they’ve prepared for it. I’d recommend watching, but maybe not one for your lunch break, or just before a client meeting, unless you want to kick start a conversation about death and dying there….and why not!
Today is the launch of Dying Matters awareness week, that is themed this year as #yodo You Only Die Once. A week long flurry of activity, awareness raising events, meet ups, socials, academic lectures, press coverage, everything and anything to draw people’s attention to death and dying, and the benefits of discussing your wishes with friends and family early.
There are a wealth of resources available here and the Dying Matters website covers what they’re focusing on:
- the taboo of discussing death – apparently 83% of people in Britain believe people have difficulty discussing death
- a call for death, dying and bereavement to be added to secondary school national curriculum
- an app that is freely available to download during Dying Matters week: Legacy Organiser app
- actors discussing death and dying
This week always gets me thinking, as I’ve blogged before in 2012, I’m (unusually?) comfortable with discussing death and dying. I put a lot of that down to my upbringing, my Mum was a probate executive, family friends were undertakers (you can’t avoid discussing death if there’s a hearse parked at the top of your garden) and I didn’t experience death of someone I was very close to on a personal level until I was an adult (all of my grandparents, great aunts and great grandmothers lived to their late 80s/90s). This week will mark 18months since my Dad died and I’ve tried to share the experience of his illness, death and life after his death through my blog.
In this post I’d like to explore this notion of taboo. The Dying Matters research shows that 83% of the public people ‘believe’ people are uncomfortable with discussing death and dying. I can’t find a link to the actual research so I’m not sure how it was conducted, or indeed how many people were involved. What it leaves me wondering is whether people really are uncomfortable, whether the taboo is as all crippling as Dying Matters week would have us believe, or whether we create a perceived social barrier to protect ourselves, in case we make someone uncomfortable, to protect ourselves from that embarrassment!
I’d like to unpick this a little. I have no doubt whatsoever that Dying Matters week is required, and having had relatively recent experience of a couple of close family members dying (one in hospital aged 94, the other at home aged 65) I believe we should be more comfortable with discussing death than we are. Yet, when faced with it, on the whole my experience has been a positive one. Perhaps it was because both my relatives had ‘expected’ deaths, my grandfather was old and frail and my Dad had a terminal illness, so his death was no surprise. It could have been simply because I am open discussing death (and as I mention above was brought up to be so) that other people didn’t feel as much discomfort discussing death with me. It could be because we were talking about ‘others’ deaths, my Dad and my Grandad, not my own or their own.
I think the film made by actors above usefully highlights some of these issues too. Apparently 9.7million viewers tuned in to watch Hayley’s death in Coronation Street, if society was as averse as we’re had to believe surely viewing figures would have been lower on that occasion, not higher? There have been an increase in the number of celebrity’s headlining programmes about their own death, one striking one was Terry Pratchett’s documentary Choosing to Die that aired in 2011, and just last week (episode two this week) Billy Connolly was fronting a programme discussing his own pending mortality, Billy Connolly’s Big Send Off (available on catch up for the next 28 days). Incidently, my most popular blog post in the last twelve months is Five things I wish I knew when my Dad was dying of cancer. My hunch is that people wish to know about death, and maybe even wish to discuss it, more than we’d care to admit to!
What I’d like to suggest is that we take natural opportunities to discuss death and dying as they arise, seems kind of obvious, but at the start of a week that by its design has an unusual (I hesitate to say unnatural) focus on death and dying, i’m reminded of two episodes of one of my favourite TV shows. I don’t watch much TV, but love a good documentary and quite like Kevin McCloud’s style (it’s as much what he doesn’t say as what he does) on Grand Designs. For anyone who’s not familiar it’s a fly on the wall coverage of people building, or renovating, a property, hence Grand Designs.
There is one episode of Grand Designs featuring Lucie and Nat, that I found particularly heart breakingly, gut churning.
Tired of living in draughty Victorian houses in the city, Lucie Fairweather and Nat McBride have returned to their home town of Woodbridge, Suffolk, to build a brand new home for their young family. What they lack in budget they make up for in ambition, planning a house that will be a stunning piece of architecture as well as a responsible, low impact, ecologically sensitive home. It’s a lot to ask, but they have a brilliant architect on board: Jerry Tate was involved in the design of the Eden Project, and this will be his first domestic building.
However, before work even begins, Nat is diagnosed with cancer, and a few months later, he dies.
Eighteen months on, Lucie decides to go ahead and build the house herself. But she has to divide her time between working as a teacher and looking after her two small children, and is forced to cut her budget and some of her eco principals. But despite the compromises, Lucie is determined to build the home she and Nat had wanted and in the process creates a clever, beautiful, and affordable family home.
You can see the original episode, and what life is like six years later in the revisited episode shown in November last year (2013).
I find that episode brilliant viewing, brilliantly optimistic despite the obvious pain and anguish. You see a young couple with so many hopes and dreams and you see them being taken away from them as Nat dies before they’ve even started work. What you then see is a remarkable testament to the human spirit, to love and community support. You see Lucie fulfil their dreams, adapting as necessary, shaping a future that very much has Nat’s vision, their shared vision, within the heart of it, but gradually continuing and adapting to life without him. You also see an amazing house being built, but for me it’s as much about death, dying and legacy as it is about the house – although what a house.
Last week I watched another old episode of Grand Designs, filmed in Brighton in 2009 Barry (a builder, property developer and artist) and Julie (a nurse who works in a local hospice) set out to build their own house.
Barry Surtees, who lives in Brighton’s most moneyed suburb, decides to build a four storey modern mansion, complete with pool, gym, artist’s studio, fantasy bedroom and Japanese roof garden.
Interestingly in the introduction Barry references the enduring presence of architecture and talks about wanting a little bit of him to be left after he’s gone, people to point and say ‘look Barry Surtees built that house’. Don’t worry Barry doesn’t die, it’s not all doom and gloom on Grand Designs. Within weeks of starting though Barry has ‘two heart attacks, five heart bypasses and a run in with the bank‘. Despite this the couple go on to complete the project, but as ever with these things, for me it was the people and dynamics at play that were as interesting as the house.
I’m speculating here, wildly, but to me it was almost as though you could see the dawning realisation of Barry’s own mortality hit him throughout the programme. Keep in mind the statement he opened with, this isn’t someone with deluded notions that he’ll live forever, but you could almost see the size of the project, the indulgence, and to some extent the excess increasingly sitting on him like a weight.
There is something about sitting with someone at the end of their life, or having a health crisis that leaves you very viscerally aware that you won’t live forever, that seems to focus the mind on what’s really important. I’m not sure what my overriding point for this post is, perhaps that we should question whether the taboo truly exists, maybe it’s about not focusing on what we can’t do or what we find difficult to do, and instead find naturally occurring opportunities. Or perhaps my personal view, I think if we’re all brave enough (is it about being brave? or honest? authentic?) to discuss death and dying more often, to take the opportunities as they arise, whether that’s as a byproduct of soap operas or property development programmes, my hunch is the world would be a slightly better place. Dying Matters week presents a perfect ‘excuse’ to start those conversations if you feel you need one. Let’s get talking people.
The more observant among you will have noticed I’ve been tweeting a bit about #JusticeforLB lately. I kind of figure that if you read this blog, or my tweets, you’re fairly used to me irritating you or over-sharing on things like death and dying. I know that’s not easy for everyone but as I’ve blogged before, I think it’s important that we don’t ignore pain and grief and that we develop a way in which we can talk openly about death and dying, if we wish to.
Last July I was absolutely horrified to read this blog post from Sara Ryan @sarasiobhan:
That’s it, the whole post. If you can bear to read more you can visit Sara’s blog and follow their story since July last year. Or better still start with this post: The day I got locked out the first one (written in May 2011), it’s worth reading from the start but you’re likely to need tissues and I wouldn’t recommend doing it at work!
The key facts are that LB (Laughing Boy – here’s why) was a fit and healthy young man, who happened to have epilepsy and autism, but was in good health. This is the same as any other young man, eighteen, with his whole life ahead of him. He was admitted to a specialist unit ran for the NHS by Southern Health NHS Foundation Trust on 19 March 2013 and he died 107 days later on July 4th. Some independence day.
The fact that a fit and health young man could drown in a bath, under the NHS Care, in the UK, in 2013 is beyond me.
You can read the full independent report into LB’s death here. It was found to be wholly preventable. It never should have happened. Many, many people have taken the time to share their thoughts on the report and the implications and you can read the commentary here.
What follows since then is almost as unbelievable. I would think if such a horrific thing happened that the least you’d expect from those responsible is that they’d hold their hands up, apologise and do absolutely everything within their gift to make things right. Sara has written some thoughts on what that might look like here. Sadly, the CEO of Southern Health has yet to be seen, declined to do media appearances and we all sit and wait for this award winning CEO (yes really HSJ NHS Chief Exec of the Year in 2012) to step up and take accountability. I’m not going to recount all the ins and outs of the last week here but you can grab a summary here.
I want to talk briefly about mama lions, privilege, pain and justice. There has been much talk over the past week of mama lions protecting their cubs. I’m not a parent, completely confident I’d not be a very good one, don’t really relate to the language or sentiment, and yet, from somewhere, I find I too have developed a sense of wrong, pain and defensiveness that I’m fairly sure would make any lion scared of my roar! I am *so* angry on Sara’s behalf, on LB’s behalf, on behalf of everyone who society has deemed is slightly less important by way of their disability, individuality, race, gender, hair colour, postcode, whatever the hell it is. My inner sense of injustice has every cell of my body in a raging roar. If I’m honest this scares me a little.
Then last week someone mentioned privilege. Like somehow Sara was ‘lucky’ because she has a privilege that allows her to fight this. Shit man, I get where that comes from, and yes she’s educated, and professional, and white, and eloquent (damn she’s eloquent while also being able to swear like a trooper), but there really aint no privilege from where I stand. Privilege flew out the window a long time ago, there isn’t any privilege when it comes to trying to get answers of how your son died, and trying to put an end to people’s deaths being ignored (see Death by Indifference for more).
Sara and her family have a long fight ahead of them. As Kay Sheldon, someone who knows a thing or two about fighting for justice, had to say earlier: Justice is hard to come by. You have to have money, nouse & resilience. Sara has nouse in buckets, resilience like few people I’ve ever known (but we should be wary because any bucket can spring a leak), when it comes to money you can help here.
Privilege does come in to play here, but maybe not in the way everyone would think. From where I’m sat if Sara, who wears that coat of privilege, who is intelligent and articulate, can be silenced and sidelined by staff. If that mother lion who fought for 18 years to raise her son and give him an amazing life, if she can’t keep her cub safe, then who the hell can? I am not for a minute inferring she could have done any more, I am in complete awe of her ability, dignity and resilience.
Sara, and many people with learning disabilities, friends, carers, strangers have added their voices to this conversation.
The regulator, Care Quality Commission, have added theirs – see the discussion at about 1hr in to their February 2014 Board Meeting (the discussion last about 15 minutes).
Where is the voice of social care? Where is the NHS? The CCG? I believe that the voices missing are those most needed. Where is the comment from the social care commissioners who somehow decided an Assessment and Treatment Unit was worth commissioning? Where is the CEO of the Trust that was responsible for LB’s preventable death? If we’re really talking about privilege, these are the people we should be levelling that at. These are the people who are on large salaries to make these decisions, where are they when they need to show some accountability? I’m not just talking about those in Oxfordshire either, most social care and health tweeps who I connect with have been shamefully quiet on this issue so far. I’m sure there’s an element of head down and hope something similar doesn’t land on your desk soon, but honestly, that’s half the problem.
Sara may have a better chance to fight this battle than some parents, or than some people with learning disabilities who have no-one to fight for them and are stuck in assessment and treatment units. But, a better chance, really? It makes no sense to me that she should need to fight at all.
At the latest count 722 people have joined the JusticeforLB campaign on twitter, all voluntarily, no salaries or union reps or workforce development opportunities here. We have no specialist media training, we have no public funds to get answers, we have no real privilege, but we have a whole heap of pain, determination and a set of values that mean we won’t give up.
In the words of Katy Perry (yeh I know, forgive me):
I used to bite my tongue and hold my breath, scared to rock the boat and make a mess.
So I sat quietly, agreed politely, I guess that I forgot I had a choice.
I let you push me past the breaking point. I stood for nothing, so I fell for everything.
I got the eye of the tiger, a fighter, dancing through the fire.
‘Cause I am a champion, and you’re gonna hear me roar.
Louder, louder than a lion,
‘Cause I am a champion, and you’re gonna hear me roar!
Please keep spreading the word about Justice for LB and do what you can to support. You can sign up for email updates here.
Less than a year ago I wrote a blog post about my 35 thousandth tweet. That post focused on the inspiration provided by Kate Granger and Philip Gould and my personal support for their beliefs that we need to relearn the art of dying. This is something I feel passionately about, even more now than I did then. I’d followed Kate’s blog for some time (and still do now) and love the way that she shares her perspective and stimulates debate. The post that I still return to the most is one she wrote about the media portrayal of cancer, go take a read, but please do come back because I want to tell you about someone else, LB.
I love following blogs, it’s like the perfect literary form for me as a pretty obsessive people watcher. Blogs seem to tend to give you a bit more human or authenticity than a newspaper article, a conference speech or a book. It’s that humanity and authenticity which hooks me in. I follow a number of blogs, an eclectic range, but amongst my favourite for some time has been MyDaftLife. Written by Sara, she describes the blog as:
This blog started as a record of random happenings that I’ve experienced over time. It
iswas also about capturing everyday life, through image and snippets of conversation and observations, at home, on the bus and just wandering through life. Key players in these events, apart from LB (see below) will probably include Richy Rich and kids; Rosie, Will, Owen and Tom. As for me, I am a sociologist by background and work at a local university focusing on disability, health experiences, difference and inclusion.
The main character in this beautiful blog is LB, or laughing boy. A delightful young dude who likes buses, Eddie Stobart, scrap metal, mechanics, bus tickets, London and the Bus Museum. Some of the conversations that Sara recounts on her blog bring proper laugh out loud moments, typical teenager moments. One of my favourite such examples was this:
“LB saw the dentist at school today…”
“Wow! Did you LB?”
“What did they say?”
“Open your mouth Mum.”
Sara’s blog is absolutely rammed full of such snippets, it serves as a record of their lives, an online diary I guess. Except Sara goes above and beyond the niceties and amusing anecdotes, she shares her thoughts, hopes, dreams, concerns – it’s a truly remarkable insight into parenting, family life and living with autism. LB had autism, and lately epilepsy, but this blog isn’t about that or any other disability labels, it’s about the highs and lows of living with a young dude with such a brilliant perspective on life.
It is a compelling read, and as someone with an a background in Special Ed I loved Sara’s blog because it painted an honest, realistic, witty and humorous account of life with LB in it. Sara and LB’s stories touched me, amused me, were so good at bringing alive the person that LB was, not just the challenges he faced as a result of his disability. I wish LB was the feature of this, my 50k th tweet just in his own right, just for his brilliance and awesomeness. Horrifically he is the subject of this post because him and his Mum have taught me yet more about death and dying, loss and grief.
In July last year, LB, an eighteen year old man in his prime drowned in a bath in an NHS treatment centre. The truly gut churning reality is that his family weren’t happy about him being in the unit, indeed Sara voiced one of her biggest fears in a blog post in May, The Unit: Day 63:
The thought of him having a seizure, in a locked unit, unnoticed, has generated a new level of distress I can’t describe. I don’t care how old he is, and I certainly ain’t treating him like a child, but I want to comfort him, and keep a watchful eye for any further seizures. And I can’t.
It makes me feel sick reading that and knowing what then happened to LB, Sara and their family. Seven months after LB’s death, Sara is still tirelessly fighting for answers; to find out and understand what happened; to ensure that no other family ever has to face the loss that they have. It is beyond comprehension to me that she should have to fight, and that in this society those responsible haven’t already been held to account. Grief is such an all encompassing experience, it’s 15 months since my Dad died and I still don’t feel like I am firing on all cylinders. The notion that LB’s family should have to try and shoulder loss, fill an LB shaped hole, and keep lifting their heads as the (metaphorical) blows rain down on them, makes my skin crawl with the injustice of it all. I simply don’t know how Sara does it.
To bring us back to this post, I wanted to use my 50 thousandth tweet to draw your attention to this situation, to this remarkable woman, her beautiful son, but also to what you can do to help. Sara is raising money to cover the legal costs of representation at LB’s inquest. Yes, on top of all the fighting for answers, she also has to fight for funds. This is where you can come in, you can visit LB’s Fighting Fund and buy some postcards or prints of his art work. That’s right, you too can forever own some of LB’s brilliance, more to the point you can then join the virtual record of where LB’s Bus postcards have travelled. You can see the LB Bus map here.
LB’s Bus postcard with a Vancouver bus, shared by Anne Townsend
For those of you who still insist on ignoring death, that’s your call, but I don’t feel that I can, or would want to. In the words of John Donne ‘Any man’s death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee‘. Kate Granger and Philip Gould taught me a lot about preparing for death and facing fears that we so often choose not to voice. Sara Ryan has taught me so much about living with the unimaginable. Her resilience, tenacity and dogged determination to get answers for her son, and so many other people at risk of being lost in a system, is beyond inspiring.
I’d like to share a story from my past, I’ll try to cut the detail and make it brief.
When I was thirteen or fourteen I volunteered for a week in a local play scheme for kids with special needs. Run by social services to this day I can’t remember how I knew about it, or got to go along to it, but attend I did and one thing that happened shaped me in so many ways. I’d always been interested in difference and disability and had very few qualms around the youngsters with their varying needs. Consequently I ended up hanging out with a teenage boy the same age as me who we’ll call Bill who the others were a little wary of.
Bill used a wheelchair, had poor muscle control which meant he often had his head strapped in, was non verbal in the traditional sense but had some sort of voice computer at home (which was a bit like the future to us then) and occasionally had quite scary sounding coughing fits. Most of the kids attending the ‘play’ scheme were more mobile, and more verbal, and there wasn’t a lot going on for Bill, so we spent a lot of time together. I can’t really remember too much about it (we’re talking about twenty years ago) but I remember feeling like it wasn’t very age appropriate (Bill was smart, I could tell he was smart by his reactions to me waffling on, and by the note that would accompany him in each day with his thoughts about the day before) and I can also remember feeling bored, for myself and for him. It was about the time when I had no idea what I wanted to do with my life but was probably still harbouring thoughts of a career as a special ed teacher (what I thought I always wanted to do), while having recently discovered psychology and I can also remember being intrigued by the very cool (and a little bit quirky) OT that came in every couple of days. So I’ve no idea what Bill and I did but I can imagine it was fairly random.
The one day I do remember was when we had minibus transport arranged to go down to the beach. This was great for the other kids who spent ages running around on the sand, throwing balls, making sandcastles, but for Bill and I this was yet another slap in the face….we were expected to hang with the adults on the promenade, dodging the pensioners out for their stroll, being generally bored. Until with a little too much time on my brain I indulged my mischievous streak and asked Bill if he’d had enough and fancied going for a run. I’ll never forget his smile and the blink of his eye (quick for yes, kept shut longer for no), I double checked whispering knowing I was being naughty. Yep a slap on his tabletop tray indicated we were to make a run for it…..and so we did. Off down the promenade as fast as a relatively unfit teenager, pushing another teenager in a wheelchair could go.
There were shouts from behind telling us to stop running and walk, but the laughter from Bill up ahead spurred me on and we pretended we couldn’t hear. We ran on, and on until we hit a stone and a raised paving slab and the inevitable happened, his wheelchair tipped over, I fell to the side and the shock kicked in. The adults got there as soon as I’d righted myself and I was given a right (well deserved) dressing down. They righted Bill and he didn’t look good, the elbow of his jumper was torn and his tray table had sprung up in the collision bashing him in the face. As the adults were fussing around him he looked at me and winked, and I promptly burst into tears (of relief I think) and got told off again.
The trip to the beach ended at that point, there ensued great fuss as the kids were rounded up and back to the bus and Bill was dropped home instead of going back to the centre. I had to sit in the minibus all the way back as the adults bitched about the incident and my behaviour and fussed about Bill and wondered whether his Mum would take him to the hospital or doctor. I felt sick. That aching sick when a ball of iron is sat in the bottom of your stomach, and worse still the ache of knowing you were responsible and had brought this on yourself. I went home that night feeling awful, explained what had happened to my parents and got another rollicking, this time from my Dad. I said I didn’t want to go back there and it goes without saying that was out the question, it was my mess and I’d be made to take responsibility for it, I’d be back there the next day if it meant my Dad frogmarching me to the door.
I cried myself to sleep that night and woke up with the leaden stomach again the next day. When I got there I was taken aside by a more senior member of staff, who to be fair was measured in her telling off but still quite clear that I was responsible. The worst thing was I couldn’t see Bill, he wasn’t parked by the door like he’d been every other day, and I was told he’d not got the bus in that day. I was told to make myself useful by playing with some of the younger kids, then five minutes later the door opened and a woman I’d not seen before wheeled Bill in. He looked like he’d been through the wars, he had a massive bump on his forehead and a graze on his nose, but I got the biggest smile. The unknown woman hurried into an office with the senior person and I left to go say hello to Bill. I remember saying how sorry I was and trying to not get upset and him holding my arm and chuckling, that turned into a coughing fit….and at that moment I was called into the office.
I just wished the floor would open up and swallow me, I was struggling to hold it together and was completely confident that this unknown woman would also be about to bollock me. Except she did a remarkable thing, she asked if I was Bill’s friend George, and when I said I was she gave me a bear hug. To cut a long story short the unknown woman was Bill’s Mum, he’d been going home each night telling her about me and the night before he’d told his Mum that this was the best day he’d ever had at the scheme (he’d been a regular since he was little). Battered and bruised and with his favourite sweatshirt torn, he’d apparently not stopped laughing while telling his Mum what we’d done. She said she’d tried to tell him off for encouraging me but that she couldn’t. She’d driven him in that day because she wanted to thank me, for treating Bill as Bill, and for enabling him to do what any other kid his age would do, including getting hurt!
Now I’m not for a minute, even to this day, claiming that what we did was the right thing to do; of course the outcome could have been far worse and I’m lucky that Bill didn’t do himself (or rather I didn’t do him) some sort of serious injury, but the lesson it taught me wasn’t one about breaking rules, or being personalised, or having fun. It was one about taking responsibility. If it had been up to me I’d not have gone in that day, the shame and guilt and responsibility felt so bad, I wanted to hide from it; but no, if there was one golden rule in our family it was that you take responsibility. That actions have consequences, and that if you mess up, you take responsibility, you apologise and you make sure it never happens again. For years I had a photo of Bill and me taken that day, it was carried around with me, pinned to numerous walls and pinboards above desks; I loved that photo and I hated it – Bill looked battered, but also defiant and had *the* biggest smile in his eyes, I looked a bit solemn and sheepish and guilty….as indeed I was. Somewhere along the way it got lost, I’ve not seen it for years, and unfortunately I didn’t manage to keep in touch with Bill – I think about him often and wonder what happened to him and his wonderful Mum, and am desperately aware of the positive impact they had on me.
Why am I sharing this with you? Partly because it’s a little of my history and I think it’s a nice example of how sometimes I greatest fears aren’t realised, and that taking responsibility and actually being held accountable is a good thing; but also because it’s been at the forefront of my mind as Sara Ryan and her family battle to find out what happened to her beautiful son Connor. I’ve read Sara’s blog about life with Connor or LB (laughing boy) for some time and the recent entries are heartbreaking, well they have all been since he died in July, in an NHS facility. Sara has managed to find words to share an immeasurable pain, to educate us who take that journey alongside her and I’ve physically felt that leaden ball in the pit of my stomach several times when I’ve read it of late. I feel sick, shamed and shameful that we live in a society where this happens, and no one is brave enough, or human enough to say sorry, to take accountability, to apologise unreservedly. Connor lost his life, it’s the least that could be done.
This morning Sara shared some of her thoughts about how it could be different; I think they’re worth a read for all of us, it’s time to take responsibility:Tweets by @georgejulian
NB Make sure you scroll in the widget to see all the nine tips.
About two years ago I read a brilliant article Twitter by Post in which Giles Turnbull had taken twitter offline, replying in real time via the post. During 2012 I attempted to make more of an effort to send postcards, and I’m delighted that a few tweeps have been on the receiving end.
I’m hoping you can help me out again. I am a complete card and postcard hoarder. I love them, I’m forever buying them, but this summer I vowed to not buy any more until I’d got rid of the bulk of what I have; this is just the tip of that iceberg:
Here is where you can help me out. I have fallen in love with some new postcards. They’re postcards with a conscience too, they’re being sold to raise money for legal representation at Connor Ryan’s inquest. Connor was just 18, at the start of his adult life, when he died on July 4th this year. Connor was taking a bath in an NHS treatment and assessment unit, as someone with epilepsy and learning disabilities, and never should have been left alone. His mum, Sara, has been blogging about life with Connor (LB: Laughing Boy) for a number of years, if you’d like to know more, grab a coffee, some tissues and prepare to read it and weep.
So, anyway, what has this got to do with you? I’d like to buy some of Connor’s bus postcards, I think they’re ace. I made a promise to myself not to buy more postcards until I’d shifted what I had….so please let me know if you’d like a postcard from my existing stash. You can email me your address and I’ll just randomly send you a postcard at some point in 2014. I promise not to sell your address, to spam you (other than with postcards), or to burgle you when you’re not looking….if I can shift twenty of my current stash then I can replenish.
If you’d like to support Connor’s campaign then please do go buy some postcards, cards or prints of your own. Thank you.
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.
Pick what you’re interested in…
- @jaxrafferty @AMLTaylor66 don't ask; important thing is am here and haz toothbrush for AMLT :-D tweeted 6 hours ago
- @AMLTaylor66 where are you Taylor? I haz nasher cleaner for you :) tweeted 6 hours ago
- @AMLTaylor66 @jswec @jlwestwood @AngieBartoli I'm still driving, do you want me to bring one for you? Am sure I'll pass shop? tweeted 8 hours ago
- @lizith nope, I can do that, smoothly done @jonbolton have to set @vivacards up so no lie in on cards anyhow :) let me know where/when tweeted 8 hours ago
- @HelenHSAUK wow, am honoured ;) my work and personal blogs are quite different in style methinks but @Crouchendtiger7 is consistently class tweeted 8 hours ago
- @lizith am mobile, hire car (nicer than mine!!) traffic and diversions mean will be late tonight but lots of time for social tomorrow #jswec tweeted 8 hours ago
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