I’ve been involved with the JusticeforLB campaign now for over six months, a number of people who work in communications roles, especially in the NHS, have been in touch in that time to say how useful this campaign has been for their learning, indeed one person described Southern Health’s behaviour as the ugly, of the good, the bad and the ugly of #NHSSM. Enough said. There have been many many times when I’ve been astounded at what I’ve heard, seen or read, I offer this to help with yet more learning. Last night Sara published a letter from Katrina Percy, the CEO of Southern Health NHS Foundation Trust, the trust responsible for Connor’s ‘care’ at the time of his preventable death. The chronology of this is as follows:
NHS Leadership Academy published Leadership: When the going gets tough sharing Katrina’s experience of leading in challenging times [I will refrain from offering commentary or opinion on that piece but suggest you read it]
Sara published Dear Katrina Percy in response, welcoming Katrina’s new commitment to transparency and openness with 16 questions relating to her son’s care and death
In the context of Board minutes being clear that the Chairman suggested all staff should stop pressuring Sara to meet Katrina, as she did not wish to do so [obviously that instruction didn’t get as far as the comms team).
Then silence until the reply. You can read it on Sara’s blog, Katrina Percy. The Reply I’m not going to include it here in full because there’s more than two pages of what I’ve come to realise is self-promoting, narcissistic leadership and dire PR speak. So I’m going to deconstruct some of it below, sort of interpretation and learning points from my perspective as an interested observer.
‘As you will have read, I believe one of the hallmarks of good leadership is a commitment to as much openness and transparency as can be provided within the context of providing health and care services to often vulnerable people, their families and carers in sometimes deeply challenging circumstances’.
‘As you will have read‘ is surplus to requirements and included simply to try and introduce a framing of KP’s knowledge as something that Sara should be deferential to.
‘I believe’ the first of many, you could argue this is a personal language, or you could consider it to be coming from a place of ego and belief that the authors position is of prime importance.
‘one of the hallmarks‘ so suddenly it’s not all about transparency and openness (it was in the article that initiated this exchange), suddenly it’s conditional and of lesser importance than initially suggested
‘a commitment to…’ not actually being open and transparent but committing to it, you know we have it on our intranet but no-one has to do it sort of thing
‘as much openness and transparency as can be provided…’ here we get another conditional clause, silly Sara, pesky of you to take us at our word, you obviously don’t understand the complexity of our working environment
‘often vulnerable people….in sometimes deeply challenging circumstances’ Really? This is in there? Did whoever wrote this not recognise the irony of informing Sara of this? Her son died, in their care, a preventable death, really you think she doesn’t live, breathe and grieve in challenging circumstances?
‘I also strongly believe that good leadership is founded on a determination and deep commitment to do what is right for all parties concerned, not necessarily what might be either easiest or most popular at any particular moment in time or demanded more loudly or persistently by one group or interest than another – no matter how strongly their views are held or how often they are repeated’.
‘determination and deep commitment’ to assert your own truth and belief of what is right in a situation. Subtext I know my view and I’m top of this tree so what I say goes, even to the facing of a grieving parent.
‘all parties concerned’ ohhh right, all parties, we’ll not be explicit about that, but as much as I’m all for equality and justice, I don’t think all parties in this situation have an equal footing, some of those parties are responsible for a young man’s death…
‘easiest or most popular‘ this astounds me, quite clearly this letter has been through multiple draftings, experts, members sign off – but somehow this reference to what is easy or popular remains. What happened to compassion and candour? Instead of somehow worrying about the impact on herself, ‘her staff’ and closing her ears to public opinion, has she once considered why something may be viewed as popular, has it ever entered her head that the popular opinion may be right, and her’s wrong?
‘more loudly or persistently’ really can’t imagine what this refers to, unless of course it’s these pesky online supporters who have gathered around Sara and Connor’s case, demanding better.
‘I am deeply proud to lead Southern Health NHS Foundation Trust and the around 9,000 dedicated people who devote their working lives to caring for and supporting their fellow human beings. The thousands of staff I lead do very many things brilliantly and I am always keen to support and promote them wherever and whenever they do. Some other things we do reasonably well and we are always looking to work with our staff and partners, service users and their families and carers, stakeholders and regulators to improve in those areas to match the best’
Phew, where to start with this paragraph. Think it reads clearly as for internal benefit, there are some soundbites here that will be recycled into staff briefings and slide sets and internal reports no doubt.
‘deeply proud to lead…’ yep, I’d hope so, that’s what your six figure salary is for (£165k rising to £225k if you include pension payments). When KP communicates she seemingly always manages to make it personal and never manages to acknowledge that all is not equal. Sara is a grieving parent, trying to find answers about her son’s death, with a grieving devastated family, her own job and life….this is KP’s job. They are not equals.
‘devote their working lives’ wowwww there. We’re not talking about callings or vocations, we’re talking about staff members paid to provide a service. I’m not doubting some are dedicated but this isn’t about devotion, it’s about standards of care and quality.
‘do very many things brilliantly’ Seriously? In paragraph three, we’re brilliant, what is your fuss about, we have thousands of brilliant staff providing brilliant support….we’ve little evidence of this, CQC and Monitor repeatedly find otherwise, but we’re brilliant, I say so, how dare you challenge us?
Even if we acknowledge that this is true, and Sara has been explicit since day one that there must be brilliant caring staff, indeed if you read the independent report that found Connor’s death was preventable you can see there were some brilliant staff, seemingly working in a vortex and vacuum of good leadership, brilliant against the odds, not as a matter of KP’s leadership. So if we take this statement as true. Connor still died, in their care, a preventable death….so to rub a grieving families nose in their brilliance just seems beyond comprehensible. Is it deliberately done to cause further pain?
‘reasonably well’ is then introduced, reasonably well. Surely not. Then the notion that services users, families and carers should want to work with them to make things better, to improve things. Is KP going to share her salary around to ensure those people are remunerated for their time and effort then? As for wanting to learn, Sara has been sharing her thoughts and ideas for years on her blog. She knows from FOI and personal records requested that her blog has been discussed by staff in Southern Health, so one would think this would be an appropriate time to acknowledge it and share gratitude for that? No, oops, moving on….
This is the first three paragraphs, I’ll leave you to read the rest and will revisit later if I have time or inclination. If you work in NHS Communications and you’d ever dream of sending a letter like this, please please please think again. Thank you.
Fallen cold and dead.
You’ve fallen cold and dead.
Fallen cold and dead.
Going to keep this one short, there is enough written about the limitations of fighting metaphors to last a lifetime (however long that is). Susan Sontag wrote Illness as a Metaphor back in 1978, since then many, many others have visited this territory. I was reminded today of Jay Rayners obituary for John Diamond (hat tip to Michael) and surprised to see it was 13 years since John Diamond died. I can remember reading his column and his book, years before cancer visited our family, and being humbled by his frank honesty, a quality also present in Kate Granger‘s writing in more recent times. The Metaphor in End of Life Care project at Lancaster Uni has also recently been exploring this in relation to death, dying and end of life.
So, why given all this am I still typing. To register my displeasure at the current Cancer Research UK campaign #WeWillFight. The campaign calls for people to ‘show cancer how they feel by sharing your fight faces’
— Cancer Research UK (@CR_UK) August 11, 2014
While looking at Cancer Research UK resources for this post I have to confess it wasn’t easy to identify what the campaign was about, or the thinking behind it, but I did find this video [click to visit their site in a new window and watch] on The Bank website ‘We Will Win the Fight’. Wow, apparently The Bank produced this ad, with a ‘bold creative concept’….that personifies cancer with a menacing male voice and a soothing woman who will make it alright. To be honest I found this ad almost as nauseating as the #WeWillFight campaign, although it’s not clear whether they’re related or not.
Those of you who have read this blog for a while will know that my Dad lived with cancer for five years. He described his own experience as a fight, ex-navy and military through and through, the metaphor worked for him. At his funeral I gave the eulogy and felt like I had to address metaphor:
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.
I think there’s a big difference between someone facing cancer choosing a metaphor that works for them, and a large well funded organisation using a fight metaphor to campaign with. I’m not convinced that Cancer Research UK should be encouraging people to ‘fight’ cancer, I’m really uncomfortable with the language and the implication. I have seen on twitter tonight that they ‘tested’ the campaign before launching. I accept that their focus group may well have said it worked for them, it doesn’t work for me. Oh and for the record testing ‘join the fight’ isn’t the same as implementing #WeWillFight.
The week after the centenary and commemorations of the start of World War One, with war raging in Gaza, Iraq, Syria should a cancer research charity really be encouraging people to share photos of themselves with fighting faces? I can’t help but feel this is an incredibly poorly executed campaign, almost lazy in its approach. Can imagine it now, the social media crew raving about the #nomakeupselfie campaign, which for those with short memories was not started by an agency or a charity, but completely by accident by a couple of punters. What verged earlier this year on a narcissistic trend is now becoming tired, it’s slacktivisim gone mad. I’ll watch and wait to see if Cancer Research UK can track and evidence their income as a result of #WeWillFight, or whether what they actually end up with is a short lived social media campaign of people posting pictures of themselves pulling ridiculous poses.
From my perspective the sooner this campaign is over the better, I can’t get past posting your picture online being more likely to indulge your self than ‘fight cancer’. If you really want to make a difference, look at what you can do to improve your own lifestyle; sure donate some cash, spend some time volunteering, do whatever works for you, but please don’t anyone ask me to post my fighting face and please don’t claim that you’re helping by doing so.
My small contribution to improving people’s experience of cancer, is this blog, and the posts within it. From my perspective the sooner we develop a more evolved language and understanding of cancer and illness the better, so feel free to join in the discussion.
For those wondering the blog title is a quote from Fight Club…it’s also worth remembering when you introduce fighting metaphors to cancer.
I appear to be developing a bit of a habit of marking the round numbers of thousands of tweets with a blog post, not sure why really other than it seems good to mark the symmetry in some way, and perhaps also to take an opportunity to highlight a few things.
My 35kth tweet was marked by a blog post about the amazing Kate Granger and the need to re-learn the art of dying. Written back in May 2013, I’m delighted that a year later I had the opportunity to meet Kate, and even more delighted that she is still here, helping and inspiring many of us to face death and our thoughts about it on a regular basis. Long may that last.
My 50kth tweet was marked by a blog post about the indomitable Sara Ryan and JusticeforLB. Written six months ago at the start of February, it introduced my world to Sara, to LB and to the campaign seeking to raise funds for LB’s family to have legal representation at his inquest. Anyone familiar with this blog will have seen my posts since, and my own attempts to raise awareness and funds.
This left me in a bit of a dilemma as my 60kth tweet approached. Kate and Sara continue to do their thang, so who or what was of similar magnitude of importance? This got me thinking and reminiscing.
Five years ago I had the absolute privilege of a place at the Do Lectures, a residential like no other, a whirlwind of hope and possibility on the beautiful Fforest campsite in deepest Wales. A truly amazing, life affirming and life challenging experience for me that I really should blog about some time. The following year once the 2010 Do Lectures videos were available I set aside a weekend to watch them. The stand out film for me was this one:
I can remember the first time I watched it. Feeling an intense optimism for the human race, balanced with a feeling of being sanguine, jaded and a little old, in fact it was possibly one of the first times that I realised I was no longer young! I’ve spent my life being told I’m naive and too optimistic, but no longer could I consider that youthful naivety! Fast forward four years and I was scrolling through instagram the other day when I realised that Maggie had to be the feature of my 60kth tweet.
Having followed the journey of this amazing woman for years now, the world needs to hear more of what she is doing. I don’t for a minute believe that every one of us can, nor should be, like Maggie Doyne in our approach. However I completely agree with her that the human family can, and must, do better. I watched Maggie’s Do Lecture again last night.
I was left with a similar sense of awe at what she has achieved, but also a glowing ember of possibility in my soul. Of hope for humanity, accompanied with a niggle and a doubt of whether I’m doing enough. More soul searching ahead for me I think, I’ll keep you all posted on that, but in the meantime please take the time to watch Maggie’s Do Lecture, it’s 25 minutes well spent.
I hope one day to make it to Nepal, and if I do I’ll hopefully visit Maggie and her amazing family at Kopila Valley, for now you can keep up to date with the happenings at the Blink Now foundation here.
Short post from me today because it’s Day 2 of #JSWEC, the morning after Social Care Curry and I’ve a workshop to run later today and I’m selling VivaCards, so lots and lots of reasons why this can’t be a long or detailed post. I offer that context to also point out that this is not a well considered or reflective post, it’s just me sharing where I’m at with the world.
Last week (following Bubbgate) I wrote a post about social cares love of a false dichotomy, this week I am seeing it invested on a micro level. Last night there was a panel debate at JSWEC on A Question of Social Work. Take a look at the hashtag on twitter to get a flavour, suffice to say I was completely underwhelmed. Lots of talk about social work or academia, ‘dead’ or inspirational practice, adults or children….we’re obsessed with these bloody dichotomies, and it helps no-one.
This morning I was greeted by a tweet clearly stating that ‘Only parents see the real crisis’ this was in relation to the #JusticeforLB campaign. Maybe it was just a slip of the finger, maybe it was actually meaning what the author went on to clarify, about her own fear for her child and so on. This is real, and valid, and needs to be acknowledged. The first statement though, that’s just exclusionary. The making an issue about parents, or about LD, or about ‘insert a.n.other group’, is no different to the level of dichotomy in our debate last night.
Debs flagged this in relation to the JusticeforLB campaign ten days ago, in her post Divided we fall:
However, the one thing that continues to amaze me is the fact that so much of our strife and stress comes not from practitioners and poor systems, but from other fellow-parents or from those who are supposedly there to support us – those who should know better – not working together or judging us.
Recently, there was an amazing social media campaign: 107 days – Justice for LB. The one thing I loved most about this campaign was the absolute solidarity it created. Everyone stood with LB’s family and supported them. Everyone was working together towards the same goal. I felt proud to be part of that amazing Community. We all left egos at the door, politics and personalities didn’t matter; everyone just wanted to get on board and work together.
Then the campaign finished, making some great achievements in the process, but with it went that feeling of togetherness and a true team. We have quickly reverted back to making it about ourselves and how these thing affect us rather than thinking “wow, we managed to achieve some great things together, what next?”
The minute you start identifying as a group or tribe by any characteristic, you immediately exclude some. The minute you reduce human rights issues to a particular group issue, you immediately exclude some. The minute you make discussions about social work or research, you immediately exclude some. Maybe I’m naive (I’m fairly confident I am) but why can’t we focus on a collective whole, what we all have in common, what we want to achieve. Why can’t we talk about our work or our passions and the difference it makes, rather than our professional/personal labels?
The only future I can see is one of collective response and responsibility. As someone tweeted in the debate last night we’ve been having these conversations for about 40 years, and I dread to think how many more people need to die before something is actually changed with provision to prevent that. Final thought on this for now is from Seth Godin:
‘“Life’s too short” is repeated often enough to be a cliche, but this time it’s true. You don’t have enough time to be both unhappy and mediocre. It’s not just pointless, it’s painful’.
Taken from his book on tribes ‘Tribes: we need you to lead us’, well worth a read. Oh, and this is the only sort of camp I’d want to be on these days:
Short post from me highlighting something that I think is growing more popular in our conversations online, and is to be blunt wildly unhelpful: the rise of a fascination of false dichotomies (I made up the collective noun). What is a dichotomy I hear (some of) you ask?
A dichotomy is a contrast or split, so what’s a false dichotomy? I’m sure you’re all familiar with it’s use, essentially its the suggestion that any situation must be a dichotomy e.g. black or white. This line of argument completely ignores the grey in between, or the full colour option of course. Painting something as one thing or another, explicitly or implicitly, completely misses the fact that in most situations there are more than two choices.
Rarely in life are there only two, completely contrasting options. When a task or situation feels overwhelming, it makes sense to try and simplify or reduce things down to manageable options, however, as tempting as they are to believe I think we need to be wary of false dichotomies. Very rarely is it simply a case that our choices are A or Z; that one political party is bad, a.n.other political party is good; that care is either exceptional or dire; that you only critique if you don’t care. Let’s turn to my friends on wikipedia to explain this further:
When two options are presented, they are often, though not always, two extreme points on some spectrum of possibilities; this can lend credence to the larger argument by giving the impression that the options are mutually exclusive, even though they need not be. Furthermore, the options in false dichotomies are typically presented as being collectively exhaustive, in which case the fallacy can be overcome, or at least weakened, by considering other possibilities, or perhaps by considering a whole spectrum of possibilities.
So why are false dichotomies on the rise? (This assertion is based on my twitter observations, complete anecdote, no fact involved). I think life is complex and simplifying helps people to become involved with your issue and understand complexity. I think sensational headlines sell media stories. I think we’re growing lazy in our inability to truly debate or consider multiple options, which leaves us in a race to the bottom.
There have been a couple of blogs this week focusing on the JusticeforLB campaign Divided we fall and Justice at the margins. These posts reflect on how the #107days campaign worked, why it managed to engage people and bring together a momentum around a loosely defined common cause, and the broader learning. It has been great to see other people’s interpretations and what struck me was the power of the diversity of actions in #107days. It was an antidote to dichotomy, there were 107 very different days, responding in a myriad of ways to the very open call for involvement. Everyone was welcome and everyone was accepted and there really wasn’t too much ego or sales or agenda pushing.
So why is JusticeforLB relevant to this, and why does any of this matter? Well, maybe it doesn’t, or maybe it does, or maybe it does sometimes for some people in some places. It really isn’t a black or white issue (see what I did there).
In a week when the learning disability world is yet again wondering whether they are taking part in some big endurance experiment in shite communication and appalling 1950s decision making, at the hands of Stephen Bubb via NHS England this time, I think it is important to remember that false dichotomies help no-one. The next time you read a blog post or a press release or a tweet from one of the ‘key players’ in this world, ask yourself what’s behind the words coming out of their mouth, and why they choose to construct messages as they do. In a nutshell I see a lot of people and ’causes’ using false dichotomies to try and, to be blunt, scare people into action or stupefy them into inertia.
People with a disability, their family and friends are expected to be grateful, to sit quiet, to not act, to accept that the options are: Fairly Rubbish Option One or Even More Rubbish Option Two. Occasionally an Even More Rubbish Option Three is offered. Of course people feel like they are backed into a corner, and of course the implicit alternative option is always nothing. You are left accepting rubbish in the belief that if you don’t, then you will get no support, no involvement or help. Crumbs from the table sort of thing.
There was a corker of a false dichotomy last night in a Mencap statement about their CEO’s involvement in Bubb’s breakfast:
I and Mencap have a choice about whether we want to influence and shape what happens or sit on the outside and critique activity….Currently, this is the only opportunity I see to transform the lives of people. As such I will be involved and do everything I can to make any group working towards this end a success.
Fairly Rubbish Option One: Whether we want to influence and shape what happens
Even More Rubbish Option Two: Sit on the outside and critique activity
Implication: Everyone should be grateful that Mencap (as stitched into the problem of learning disability provision as the next large charity that claims to represent people with learning disability, but is also a provider of services so has a MASSIVE vested interest) are involved.
There is also of course an appallingly passive aggressive inference at play in this wording too, that you join Bubb’s brekkie, become a Bubb’s babe (let’s not forget the indomitable Su Sayer from United Response), or you are an outsider (like it’s your own choice) and that critiquing activity is bad. Maybe if Mencap would care to look in at itself and critique it’s own activity they may not be so quick to dismiss alternative options.
Perhaps more importantly why, oh why, does the CEO of ‘the voice of learning disability’ see this as ‘the only opportunity to transform the lives of people’. Bloody hell, how uninspiring. Get out your office, ditch the breakfast meetings, work with your local groups, meet the people you’re the voice of, listen to what they have to say, listen again, and listen some more – then get on and do it. It is indefensible to me that an organisation that claims to be ‘the voice of learning disability’ claims its only option was to join that group, in that way (and of course waltz Bubb off to look at one of their own homes after breakfast to ensure he understands the complexity, and great work that they do).
Where are the values that should be threaded through the core. Where was the person saying no, I don’t think this is appropriate. Why wasn’t the voice of learning disability saying we should start by holding breakfast for 100 people with a learning disability, we will serve them breakfast and listen to what they have to say (yes feel free to take that idea and run with it, we can all look away while it’s hastily scribbled into The Plan). Why are we living in a world of false dichotomies?
I am of course aware that some may argue that my painting large charities as incapable of providing services and advocating for their ‘client’ group is a false dichotomy in itself. I’m not sure, I have no doubt that it should be possible to advocate and provide a good service, I just don’t see anyone doing it very well. What I did see in #107days was over a hundred different ways of addressing a situation, as personalised as you could make it, people with disabilities involved and at the heart of everything (can’t really comprehend why they wouldn’t be), no CEO on a large salary, no communications department issuing scary false dichotomy statements, no breakfasts provided, just a huge collective group of brilliance.
Please stop insisting on black or white, the answer is in the grey.
Wow, what a day. I pride myself on being quite good with words, they’re my preferred tool, and usually I can sit down, think for a moment and the fingers just start typing and the words come.
Today I can’t find the right words, or rather I can find the words, but not the syntax to give them the impact I’d hope for. The words merrily skipping around the edges of my brain include terrified, excited, intrigued, emotional, angst, joy, pride, nerves, laughter, cackle, waver, manic, loss, grief, proud, LB, Bobby J, death, life, hope, belief, conviction.
Luckily for me, and for you reading, and for my crowd-funders who have pledged their cash and financial support to #hairhack, the truly awesome Paul Clarke had volunteered his services to capture the day. What follows is just a selection of his shots, because when words fail, pictures speak – at least these ones do.
Lucy has been my hairdresser for about eight years. I’m the worst possible client, I have no idea what I’d like but I know what I don’t like, I get *very* easily bored but have zero commitment to maintaining any style, I’ve probably been close to the wire or late for about 70% of my appointments in that time, and I’m always hoping she can somehow work magic. In that eight years Lucy has had two babies and Selena and Laura have had to put up with me, but I can honestly say I’ve never met hairdressers that put me more at ease. When we arrived today Lucy and Selena had it all planned, they knew exactly what they were going to do. After a few tears, Lucy’s not mine, for once I didn’t cry, and a final selfie, we were off…
Once the deed was done, rinsed and tidied up, any mixed emotion or tension was definitely replaced with relief and joySo there you have it, my contribution to Day 105 of #107days. In honour and memory of Bobby J and Connor, in gratitude to Rowcroft Hospice, and in awe of Sara and Rich and their fight for answers and improvement.
I’m not sure I would have got as far as today if it wasn’t for all of you who pledged your support, if you’d been meaning to donate, you still can and really every penny does count. The current total is £5,440 but I’m hopeful we’ll find another £60 to make it a nice round number, unless of course anyone wants to pledge for a half day workshop on social media campaigning.
I’m very grateful to Abi and my gorgeous nieces, Libbie and Phoebe and to Em and Jo who all came along to provide moral support. I’ll be forever indebted to Paul for these amazing photos (there are more but you’re not having them all at once) and to Lucy and Serena at Stylz who jumped at the chance to support me in my headshave, despite a guarateed loss of business. So if you need any photos taking, or if you need a haircut (I promise they wont scalp you unless you ask them to), you know what to do.
I’d better finish before this turns into an Oscar style speech, but thank you, really, to all of you….now here’s me trying, and failing, to look mean! So if you’re reading this and you’ve yet to dig deep, please do so. Thank you.
Pick what you’re interested in…
- @jaimeelewis @JonathanGardam @eddiec10 @MattBowsher1 candy floss evidence #ncasc14 http://t.co/fTpeZpznSu tweeted 8 hours ago
- Feeling cheated @jaimeelewis promised me cocktail of candy floss greatness but instead we've samples and ice chunks! http://t.co/1hsV405253 tweeted 8 hours ago
- @mariamcgoretti reading his book about identity at the mo, is fascinating if you're interested in that article tweeted 11 hours ago
- RT @Crouchendtiger7: #ncasc14 Michael Bichard chair of @SCIE_socialcare challenge - doesn't want to come to conferences of bureaucrats talk… tweeted 11 hours ago
- Solidarity becomes an expensive luxury and makes way for temporary alliances theguardian.com/commentisfree/… nb @jaimeelewis this may interest you! tweeted 11 hours ago
- @DorisDayRobbins loved it Rachel, I met Olive once, at a conference couple years ago, amazing woman. As is @sarasiobhan #synergy tweeted 12 hours ago
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