Shaking up the system inertia

February 7, 2015 Leave a comment

First blog here in an age, so happy new year everyone! This week has seen the publication of two reports into the appalling standards of care for learning disabled people in the UK. The National Audit Office published their investigation into the utter failure to transform care, as promised following the abuse at Winterbourne View being exposed by Panorama back in 2011. You can get a link to the NAO report on the JusticeforLB blog, where we also published our own audit of activity over the last 11 months.

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Following the Verita report into Connor’s death finding it entirely preventable (he died because of poor standards of care and poor leadership), refusing to be silenced or take no for an answer, we have relentlessly sought to actually improve care for learning disabled people. Not just talk about it, not plan it, not seek resources and funding for it, but just get on with it. There are many days when Sara and I have questioned if we’re making any difference at all, wary of getting sucked into the system inertia that weighs like a heavy invisible blanket on so many providing ‘care’ for learning disabled people, quickly smothering any radical or new thought. People tell us we’re making an impact, we met this week to discuss the feedback to the first draft of the LBBill and there was stacks of it, between it and/or the promised Green Paper, I’m optimistic some improvements can be made.

I’m still not sure, never sure though, that it’s enough.

Alicia Wood from H&SA blogged yesterday comparing the NAO report and the JusticeforLB report. Her blog led to conversations on twitter this morning about how we can actually change the system; whether existing solutions are enough, or indeed whether the existing system and those engaged with it (read propping it up) are part of the problem.

Personally I’m so fed up with seeing the CEO of Mencap (for one example) publicly ringing her hands about how difficult things are (on Twitter, on Newsnight or in The Telegraph), while simultaneously receiving funds to change this sort of thing. A quick squizz at Mencap’s annual report 2013-14 shows £7million was spent last year ‘engaging and influencing key stakeholders‘ yet no results are offered for the return on this investment. Sure the annual report includes some statistics of numbers of people attending events and grandiose stories of their role supporting bereaved parents to share their pain….but so what? Where has it got? What difference does it make?

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Next week the Public Accounts Committee will hear evidence from Stephen Bubb (a man appointed because he wasn’t an expert – some thoughts on that here), a CEO of a learning disability charity (Challenging Behaviour Foundation) that trades on it’s niche knowledge (no impetus to make this a mainstream issue) and a guy that used to work for Mencap and now advises the same charity, CBF. They’ll also hear from professionals employed to lead this diabolical system from the Department of Health and NHS England. Sadly the closest learning disabled people are likely to get to that committee is the stock photo used on the website.

I’m a relentless optimist so we’ll see what comes out of next week, but asking those leading a system so badly (as documented in your own report), what they’re going to do to improve things, four years after they promised and failed to improve things, feels a bit circular to say the least. Especially when it’s clear (see Alicia’s blog post mentioned above) that the challenges the NAO have unearthed were clear at the beginning, and shared with colleagues responsible.

So, what solution am I offering for shaking up the inertia? Well there are loads of ways it could be done, read the JusticeforLB audit report for what we’ve tried so far (we being the royal, collective, amazingly crowdsourced, everyone equal, everyone welcome JusticeforLB campaign). Last week we received some criticism from two disabled people that we hadn’t involved a learning disabled person in a presentation we gave. I don’t want to get into that here now, but I think the audit report stands for itself in how actively involved learning disabled people have been throughout the campaign, but I still know that we could do more.

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The person who had the most impact in the Newsnight report this week (34mins), wasn’t Sara and Rich (although I thought they were amazing), it certainly wasn’t Jan the Mencap CEO, for me it was Kevin from My Life My Choice who talked about feeding his cat and having some grub. You know, normal stuff like you or I do. Not concordats, not strategic plans, not poor data, not lack of money, just keeping it simple and keeping it real, a life like anyone else’s. A chance for Newsnight viewers to relate to Kevin, as someone like them, not as someone who is sooooo extraordinary he needs a charitable spokesperson to talk for him.

I’m not suggesting for a minute that we should leave things to learning disabled people to sort out themselves, although at this stage performance so far has been so dire maybe they’d make more progress. I am suggesting that the media should have more access to learning disabled people and that we should hear from them routinely. Foundation for People with Learning Disabilities has a campaign about this:

I’m talking about unfettered access as well, not just the ones who speak on message and protect the charities own agendas. We were contacted and invited to respond to the NAO report by several media teams in the run up to last week. Time restrictions meant that Newsnight was a yes, the others were a no, but what became clear was that the media aren’t easily able to access learning disabled people or their families, without attempts at upwardly managing the message by those within the system who are already complicit in the lack of progress. I’ve heard from two different sources that Mencap refused to introduce them to people to speak to, unless there was a slot for their media spokesperson. The people who shared this have no reason to lie, I wasn’t involved in the discussion directly so have not seen it with my own eyes/ears, but it certainly didn’t come as a surprise. This isn’t just about Mencap either (although Sara has brilliantly analysed why they’re failing people by their media responses), it’s bigger than them.

It’s time learning disabled people were more routinely involved in (read: got to make) decisions about their lives, in speaking about their lives, and in bringing about this long, long overdue change.

Pre-inquest review #JusticeforLB

November 25, 2014 Leave a comment

Didn’t want the sun to set on today without capturing something on paper (actually the sun set hours ago and this is just me and my keyboard, no paper involved, but lets not get caught on details!). Today I went to Oxford for Connor’s pre-inquest review hearing.

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I hadn’t set foot outside the station before Agent T tracked me down, completely unplanned, she’s spotted my diabolical hair, an occupational hazard of shaving your head to raise money for legal fees!

We decided to head to Yellow Submarine (an awesome cafe run by people with learning disabilities) for a cup of tea. An award winning cafe no less, they could teach the HSJ a thing or to, but I digress.

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Shortly after I met Sara and Rich and I grabbed a baguette before we headed for County Hall for the pre-inquest review hearing. Not sure if it was a hearing or a meeting really, it involved the Coroner, a court, two legal teams and a family devastated at their loss. The court room was adjacent to a cafe, so you could hear the gentle tinkling of glasses as life continued as normal on the other side of the door.

I don’t spend a lot of time in court and was struck by some of the archaic practices. We all had to stand as the Coroner entered, something I’ve not done since school more than half my life ago, but at least we didn’t have to recite ‘Good afternoon Mr Coroner’. Having asked permission to live tweet the proceedings we were declined, so copious note taking ensued. There were some gut churning, head reeling moments, the most severe of which was Sloven Health trying to claim (again) that Connor’s death was due to natural causes. We don’t need to get into that here, suffice to say that the Coroner was clear that in no uncertain terms death by drowning is not natural.

So what is my immediate reflection after today. I was fully prepped to feel despondent, the challenge with seeking Justice, is that no matter what the facts or truth is, there appears to be an awful lot of mud slung to try and muddy the waters. No matter how hard we try, Sloven Health are never far from a delaying tactic, an untruth, an accusation.

The outcome of the pre-inquest review was that the Coroner would go away and think (a good outcome I suspect) and he’ll come to a decision in the next two weeks about the full scope of the inquest. To that end there was no resolution today, no progress, and yet more hurtful untruths.

Yet as I sit here tonight typing this I feel positive and hopeful. It could be naive optimism (I’m relentlessly hopeful), or perhaps it could be from something more concrete than that. I had the absolute privilege today to meet Charlotte and Caoilfhionn, who make up two thirds of the legal team dedicated to securing #JusticeforLB. I sat in a pre-meet for an hour and can honestly say I’ve rarely felt I’ve been in the company of such professionals! They are a dream team, meticulous and knowledgeable, with right on their side – a phenomenal combination.

I also got to meet Rosie (Connor’s sister) and Agent T (his aunt). There were also lots of other family members there to support, along with three members of the press. The day after Stephanie Bincliffe’s inquest, and the day before the Bubb bull is published, it would be easy to feel despondent and helpless. But I don’t, I feel optimistic and hopeful. Nothing we can do will ever bring Justice for LB, but hopefully everything we do will improve things for all other dudes.

Sara and Rich you are remarkable. Thank you for sharing so much of yourselves with me, and with us, your collective campaign support.

It’s an honour and privilege to be part of this, and to be acting for real change, in LB’s name.

In answer to the Yellow Submarine cafe note on my lunch, it wasn’t quite a perfect day, but it was much, much better than I expected. Onwards #JusticeforLB.

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ps Apologies for the Bubb-esque tone of this post, I’m not normally so obsessed with food and cafes but I wanted to end with this pic so some context was needed!!

Life after Bobby: Life Journeys

November 15, 2014 Leave a comment

Today it’s two years since my Dad died, a marker of sorts, just another day, and an anniversary all at once. I’m never quite sure how to mark anniversaries, does your death day deserve a celebration? In a culture that so readily celebrates birth days, why not death days too? I mused this quite a bit yesterday and had plenty of time for it, as I spent most of it sat on a motorway. A fairly routine 4.5hour journey ended up taking 9 hours due to the M6 being shut.

The obvious metaphor for this post is one of journeys and snarl ups. Information is more readily available than ever before, and yet as we sat on the M6 trying to decide whether to make our own way on an unknown road, with no phone battery, or sit on the road we’d originally planned to take and wait for things to clear, it was hard to know what to do.

It got me thinking about life choices and life journeys. Regardless of the amount of information available, some days you just need to make a call, opt for a course of action and do your best. I said several times when Dad was ill that there was no manual for cancer, for knowing someone you love wasn’t going to be around any more. There’s similarly no manual for grief, for getting on with life, for remembering not wallowing; it’s sort of a journey that you’ve set off on, at a time when you’re least equipped to deal with it, without a map or compass….you get the picture.

One of the reasons behind me starting this blog was the arrival of niece one. I couldn’t bare to think that she’d grow up and not know how truly awesome her grandad was. She was two when Dad died, but she remembers him and talks about him often. The weekend before last I spent the day with her and we got chatting as we were out on our adventure. She was asking me if I remembered where she grew up (great question from a 4yr old – she lived in Wales until last year) and if I remembered visiting her with Grandad. I remember vividly the time she was referring to, it was the week after her little sister was born and Dad and I went on a reverse roadtrip. Stocked up on recent blood transfusions, we took a calculated risk to get to Wales and back before he became more ill. I honestly thought he was going to die in the service station car park on the way home. Instead he was wiped out for a couple of weeks from that trip and went on to die about 10 weeks later, but he got to meet his second granddaughter and we enjoyed that journey together.

I drove past Gordano on the way north yesterday and it got me thinking about journeys with Dad. My Dad’s family live in Lincolnshire, a good 5 hour drive from Devon. One of my earliest memories is of being picked up out of bed wrapped in my blanket and carried up the hill by my parents house to the top road and into their car. I remember being half asleep, noticing how bright the stars were, and thinking how cosy it was being cuddled up the hill. I can’t remember falling back asleep but we’d wake up as the sun was coming up, snuggled in the back seat with my big bruv and little sis, just in time to try and spot The Stump as we came into Boston.

One of my earliest, strongest and favourite memories. There was something remarkable about it, almost like time travel, you’d goto bed in Devon and wake up in Boston. Magical.

Me and Dad cuddle

I’ve come to realise in the last year more than ever before that my parents did an amazing job with our childhood. While we may have been a bit short on some of the material stuff and holidays that our peers had (I was 21 before I got on a plane), the one advantage was that we did a lot as a family. We walked on Dartmoor most weekends, we went camping or visited family for holidays, we spent time together, lots of time together. The other rule that my parents insisted on was that we had dinner together as a family ever evening, and you were never allowed to eat while watching TV (something that I mistakenly thought of as the height of sophistication as a teenager). The pay offs from this last a lifetime.

As much as I miss Dad like I couldn’t have imagined, I also remember him like I couldn’t have hoped for. Rarely does a day go past where I don’t think of Dad, chuckle at some childhood memory, or reassure myself that I’m doing ok and consider what he’d think. Proud Dads remains one of my favourite blog posts I’ve written, its an eternally useful benchmark ‘Would Dad be proud?‘. I hope so.

Whose edge counts? #theEdgeNHS

November 5, 2014 6 comments

Quick post from me. Today there is another NHS support programme being launched, the latest is #theEdgeNHS

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‘The Edge is brought to you by the Horizons Group of NHS Improving Quality. The Horizons Group is a small team operating at the edge of current thinking and practice of change and transformation in health and care. Its remit is about sharing the disruptive power of connecting to influence change, leading edge knowledge, transformation and innovation. The aim is to support colleagues in health and care to think differently about the ‘rules of change’ and make sense of it in their own context, leading to effective change practice and better outcomes for patients’

I’ve written before about my experience and concerns of these NHS leadership or support programmes. I have always been sceptical of any organised responses, my natural preference is to usually be outside the crowd. Too much conformity makes me nervous. However my thinking has moved on hugely in the last twelve months, mostly due to my exposure to the dirty reality of life for Sara Ryan and her family following their son’s preventable death. I am aware enough to know that Sara’s experience and LB’s death is just one experience, you could say one anecdote, however the messages that we have received since we started the JusticeforLB campaign would suggest that it’s just the tip of a very big iceberg. I’m not going to use this post to talk about the campaign, you can find out about it here, or about the draft #LBBill launched yesterday to try and really change where the edge is when it comes to support given to learning disabled people, you can find out about that here.

I’d like to just draw your attention to this excellent talk given by Anne Marie Cunningham in Canada at a medical education conference last week:

It’s an hour long, so find time and grab a brew, but it is brilliant. Anne Marie talks about how social media has, and can, change the way that doctors are trained. She also talks about how it can be used badly, my favourite slide on this:

I’m interested in The Edge, I’ll watch and see how it develops. It was suggested that it might be useful for campaigns, based on this page I’m not so sure. All of these suggestions appear to be about campaigning, within the constraints you’re facing. I’m not sure the focus should be on rocking a boat without falling out, I’d like to see a few more people within the NHS standing up, getting out of their boat, and swimming with those who were thrown over the cliff edge a long time ago.

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This is not to say it is all bad or deeply flawed. I suspect it will genuinely offer something to many people who work, and potentially feel trapped, within the NHS. I applaud it for that. I can not imagine how hard life must be for some of those people, especially those who raise concerns or blow whistles within the system, only to be ostracised and scapegoated. If The Edge will help with that, improve the wellbeing of those people, then it has a place.

What I can not see is how it can help those who the NHS has really destroyed. Those who it continues to destroy. Those who need it more and have no resources, HR departments or salary to support them. The aim, as articulated above on their website, is ‘to help colleagues’ so please can we not pretend everyone can join the conversation, why would anyone want to put the effort into climbing the cliff edge to join a conversation at the top that will benefit the system that is so quick to kick them back over the edge once they’re too controversial or too skilled at shining a torch on the dysfunction that exists within the NHS?

If we really want better outcomes for patients, then we need to start genuinely coproducing with them. If you really want to bring ‘patient leaders and front line change activists’ into things, then a professionally led campaign from within the NHS is unlikely to cut it.

I’m going to stop now and I wish The Edge success. I also wish people could be honest and open about what it is seeking to provide and how realistic its approaches are in that. I’ll leave you with some recommended reading of my own! The context for why this presentation was put together is here.

Feeling prickly #WMHD2014

October 10, 2014 Leave a comment

Today is World Mental Health Day 2014. As ever I’m a little uncertain and sceptical about the actual impact of awareness raising days, but genuinely believe we’ve a long way to go before discussing mental health is truly easy and accepted in society, so thought I’d add my two pennies worth. Today I’m feeling prickly.

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I feel fortunate that I’ve never really had a particularly bad period of mental health in my life, I have however had several prolonged episodes where life has been incredibly stressful, and as I look back at it now I was under immense pressure (self-imposed and from other factors) to perform to a certain standard.

There was a period when I was writing up my PhD when I was very stressed, but I felt it was normal, I almost expected to be so.

Then there was a significant relationship breakdown and my Dad getting sick, that was a particularly difficult six to twelve months.

Then there have been challenging periods at work where we’d undergone restructures, making people redundant, reshaping an organisational vision, merging with others with competing agendas, until eventually I decided to quit my job and go it alone as a freelancer.

If I’m honest the freelancer bit came later, I had no idea what I was going to do when I quit, I just knew if I didn’t stop the ever mounting pressure and remove one source of stress, I was most likely on a path to self-destruction. As it happened my Dad died my last week in work, so then life had no structure or shape and all of a sudden stress was replaced with grief and loss. I’ve blogged a few times about what that feels like:

Life is short and death isn’t rational or fair.

There is no rhyme or reason, we all have good days and bad days. Some of us are lucky enough to get some warning and chance to prepare for death and I’ll always be grateful that we knew Dad was dying, but you can’t really prepare for grief. It’s raw and real and visceral and painful. That pain lessens as time goes on, or maybe it doesn’t and instead our ability to live with it and accommodate it just increases, I don’t know which.

I’ve also blogged quite a bit recently about the #JusticeforLB campaign that I’m involved with. This week it became apparent that Southern Health have been surveilling Sara’s blog, which led to this post from Anne Marie Cunningham about the ethical implications and this one from Tim Turner on the data protection and FOI elements. It is somewhat ironic that after promoting heavily their new listening app, while having hundreds of stories without any changes on Patient Opinion, on World Mental Health Day they’re giving advice on mental health, while being solely responsible for the prolonged and relentless attack on Sara’s mental health.

Some days I wonder how much more stress Southern Health NHS Foundation Trust can put Sara and her family under. I really feel like it’s time that someone stepped in and stopped this. She’s endured bullying and harassment from the CEO, lies from the Chair of the Board, and all she wants is to get justice for her son and all the other young dudes. Is that so much to ask?

I’m going to finish this post with an animation made for the #107days campaign that captures what life is too often like for people with learning disabilities when they experience poor mental health. Watch this and see whether you’d be happy if it was you or someone you loved:

4 more Cs: callous, cruel, calculating and cowardly #6Cs #JusticeforLB

October 8, 2014 1 comment

I’m on holiday at the moment, enjoying being sporadically connected, but today I found myself lost for words again. A couple of weeks ago I blogged a post about challenging anything NHS and the difficulties of doing so. In it I suggested 7Cs that I think I observe in communications around the NHS: control, construction, centralisation, challenge, conformity, candour (lack of) and courage (in daring to question and challenge the NHS) – an intentional play on the #6Cs currently doing the NHS rounds. Today I’m adding four more: callous, cruel, calculating and cowardly.

Last week Sara Ryan had a phonecall with the Chair of Southern Health NHS Foundation Trust Board, to discuss the awful missive sent by the CEO of the trust, to her, a grieving mother. It took me four blogs posts to deconstruct that letter, they’re all available here, here, here and here. In the call the Chair, Simon Waugh, categorically reassured Sara that there had been no surveillance of her blog – this was offered in response to Sara questioning the bizarre communications around social media.

Today Sara received an FOI/personal records request response that categorically showed this to be a lie. Either Simon Waugh is woefully incompetent or intentionally misleading. I have no idea which, but it is hard to see any other interpretation. The most agonising thing of this interaction is that if the Trust had acted on what they surveilled Connor may not have died, instead they produced a dossier/briefing about Sara’s blog, and shared it amongst staff the day after LB died a preventable death to help shape ‘a tailored media response’.

If I retain some semblance of rational thinking about LB’s death I can see that Sloven’s communication professionals were doing their job. I can’t quite yet comprehend how so much focus and attention to detail can be shown after LB’s death, when so little was shown before. I also can’t quite comprehend why such a response should kick in to manage the ‘media response’ when so little attention was given to engaging with family members or those that knew LB in the run up to his death. How can it be that reputation management gets more attention than epilepsy assessment for example?

Of course cynical me would suggest that Sloven are solely interested in their reputation, that they are experts at covering up bad news and spinning a new line. Last week they ‘launched’ yet more nonsense about staff engagement, I can’t bring myself to link to it here suffice to say the video quality is dire, the messaging sloppy, the staff unconvinced and the Chair claiming it’s ‘going viral’ with less than 40 views (most of them from JusticeforLB supporters who needed a good laugh and loved the video bomber). This week we hear that there’s a new app to help them listen:

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All of this appears to miss the point that you need a humility and openness and culture of transparency to learn and respond to feedback. Southern Health also use Patient Opinion to ‘listen’ to feedback. Their listening appears to amount to a Complaints and PALS Officer thanking people for their feedback and promising learning. In over 3 years, there have been 146 stories shared by people using their services, 2 people have listened and 1 change has been made:

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This doesn’t fill me with confidence. At all. Rather than spinning more process, more procedure, more ‘ways of listening’, why not focus on actually improving things.

I’m reading a great book at the moment, really quite thought provoking, not exactly trashy holiday reading but feels a bit relevant ‘What about me? The struggle for identity in a market-based society‘. Verhaeghe discusses neoliberalism, market economies and uses the example of healthcare and a focus on procedure and measurability over quality and care:

‘a neo-liberal organisation invariably creates a non-productive top layer whose main task is to maintain its position by monitoring others, resulting in ever-proliferating rules and regulations. Performance measurement is fostered in the name of ‘transparency’, the idea being that the criteria are clear and apply equally to all. However, studies show that they only apply to those who do the actual work, not to those who do the measuring — that’s the difference between the worker ants and the manager queens…In no time, staff at all levels adapt their behaviour, ceasing to do things that ‘don’t count’. Everything is sacrificed to the juggernaut of measurability. Unfortunately, the unquantifiable nature of care can’t be demonstrated through figures, so actual care is fast vanishing.’

I’ve a dirty taste in my mouth this evening, as yet more Sloven callous, cruel, calculating and cowardly communications are unearthed by Sara. 16 months after her son died, and yet another smack in the face and another mountain of bull to climb up. How can this be allowed? At what point will someone step in and stop this? When will someone focus on what actually happened, and not how to manage/spin/claim learning from it? It’s not like Sara hasn’t done more than I’d consider humanly possible to explain her perspective.

Final gem of context, this wasn’t shared via Southern Health themselves, despite them responding to a request from Sara, this came via the same request to the CCG.

How’s that duty of candour shaping up?

Courageous challenge versus conformist control

September 20, 2014 13 comments

This morning I was up early (for a Saturday), scrolling through twitter, wondering how to kick start my weekend. Last weekend wasn’t my best one and I was hopeful for something to set a different path. Jodi Brown and friends didn’t disappoint:

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Genuinely killer question. I don’t know Jodi at all well, we’ve exchanged tweets occasionally but no more than that, Annie C had shared this and so I thought about replying and decided to jump in. The first point of reflection is that I did think about whether to join in, a couple of years ago I’d not have engaged in any thought, I’d have just jumped into the mix and saw what came from it, but these days I tend to be a bit more cautious about engaging in #NHS chat online.

A truly fantastic conversation followed, Jodi, Annie and I were joined by about ten others, including @Ermintrude2 @JaneStreetPPAD @mikechitty @RichardatKF @alisonleary1 @JennytheM @elinlowri @gleefulkaz @carollread @NHS_rants. Not surprisingly we didn’t agree with each other on everything, in fact there were some of us who probably didn’t agree with much that others were saying, but it was respectful, challenging and for me personally a reassurance that it was still possible to have a non-scheduled, chat on twitter and have your mind stretched with multiple perspectives. Here’s an excerpt from this discussion where Jodi and I were disagreeing over what/who counts as ‘radical':

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Our chat continued, others joined in, think we were at it for about an hour in total. Really made me think and question, what I consider radical and what it must be like to work in a system (the NHS) that was repeatedly described as, without putting too fine a point on it, toxic. Lots of talk about cultures of repression, fear and hierarchy. We all went about our ways, Jodi had to take her kids swimming, Richard was off to a food festival and I hit the gym.

I left the gym an hour or so later, grabbed my phone and was bouncing home to the weekend and was hit with this tweet:

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Booooooooom, smack, bang. Sorry, what just happened? I looked around for further discussion, NHS_Rants had questioned this but there had been no response. I checked the sender’s stream, they hadn’t joined in on any of the rest of our hour of conversation, just singled in on my one comment about NHS Change Day and decided that I was wrong. Not just wrong, but obviously wrong *and* stupid or deaf – I need to be told that BOTH of the previous change days had been groundbreaking.

I lost my cool, didn’t ignore this (which I probably should have) and questioned how they could be so rude. Thing is I think social media is a conversation, and when there are ten people talking, I imagine in my head it’s a bit like we’re all sat around in a room trying to understand each other, the reality could be far from that, some were travelling, others juggling family commitments, no doubt there were PJs and gym gear worn alike – so, unconventional, but still we’d had a great conversation. How I experienced this tweet was that the sender listened into our conversation, picked one bit that they had an issue (or pride about), walked into our room, shouted their opinion (literally in those capitals), in no uncertain terms and then walked out again.

This was the exact sort of conversation I’d been nervous about getting involved with first thing. You see there are loads more NHS people on social media these days, and that’s a great thing. It also means it’s much harder to hear balance, and to truly discuss things without being shouted down by the party line. In the context of our conversation about cultures of control and challenge this was a perfect example. The sender’s biog is clearly claiming expertise in this area, they’re a ‘Social Media Innovator – NHS Change Day 2014 Social Media Lead. NHS Leadership Academy SoMe tutor. Passionate SoMe practitioner’. Their response perfectly embodied what I’d been querying in the first place. Whether all of these NHS initiatives are now seeking to use #socmed and indeed the initiatives themselves to control and centralise the messages. Ironic that the very strength of social media could be lost in so many ways. As ever I wasn’t claiming this to be an absolute truth, or even a truth at all, hence my delight at the genuinely open conversation earlier in the morning.

When I got this tweet though, it’s safe to say I didn’t feel I’d been listened to. The sender hadn’t engaged in our conversation and didn’t seek to understand where I was coming from. They just let me know that I was wrong. I don’t want to make this about the tweet though, and the lovely Anne Marie pulled me up on ‘public shaming’, which wasn’t my intention at all, hence no identifying features on this blog post. I could have exercised more tact, but I also (strongly) feel that the tweeter was incredibly selective in what they picked on, and incredibly blinkered in their engagement. This was exactly the type of conversation that is all too familiar on social media these days, and precisely what I wanted to avoid.

The NHS seems obsessed with Cs at the moment, but rather than the #6Cs that are admirable yet seemingly a distant ambition in these cultures of ‘repression, fear and hierarchy’, I’d like to reflect on a few Cs of my own – I’m not offering an opinion, just a few (deliberately loaded) questions. I’d love to hear your thoughts:

Control: Are leadership programmes/away days/initiatives provided to help sustain and support weary folk in (toxic) cultures to really bring about change, or are they used to control and pacify?

Construction: Social movements are by their nature fluid, open and dynamic, has the new obsession with initiatives killed the very essence of these strengths through overly constructing them with approved hashtags, conversation times, and self-appointed experts?

Centralisation: Is it possible to develop and improve practice in one area, then try to roll it out centrally, without losing why it worked in the first place?

Challenge: When was the last time someone challenged you? Outwardly, openly and in public? Are the social media conversations of today vanilla in colour, weak in strength and just affirming our own biases?

Conformity: How many dissenting voices feed back into your viewpoint each day? How many patients or citizens are involved and attending the many leadership courses, initiatives and awards ceremonies that you frequent?

Candour: I’ve been elbow deep in redacted documents of late through JusticeforLB, I’ve seen the inner workings of the NHS Spin Machine at its worst, I honestly think there is a long way to go before candour becomes meaningful within the NHS; that said I’ll be eternally grateful to those medical professionals (especially our GP) who showed an extraordinary level of candour (and compassion) when Dad was ill. I’ve spent years praising the NHS and all it stands for, but if we can’t criticise openly we’re never going to improve anything.

Courage: It’s hard to be a lone voice, it’s even harder to be a lone voice when your voice can be taken out of context or one thing you say can be pounced on for someone else’s agenda. I’ve learnt so much in the last 9 months about courage from Sara Ryan. I’ve also experienced first hand how utterly exhausting (and pointless) it is to be a lone voice in the face of the NHS spin machine.

I understand why people are proud of the NHS, it’s care and it’s staff. I am too. That said, if people like me need to psych themselves up to engage in conversations, something is very, very wrong. I think it’s time we had some courageous challenge, I think it’s the only way the NHS will survive and people will retain their confidence in it. I remain grateful for the chat first thing this morning, and would love people’s views on my deliberately loaded questions, because I’m genuinely open to challenge and want to learn. Thank you.

PS Thought it was worth adding a note on here that I should have included when it was first published. I know it may take courage to disagree with me (not sure why but guess we’re programmed to avoid conflict or challenge), and I know sometimes adding a blog comment feels more finite than a tweet or an email or a DM, but I really *really* would like to develop this conversation further. Since I’ve been involved with JusticeforLB I’ve had more DM/email traffic of support, and less public agreement although not necessarily less challenge. Given the actions of the Trust where Connor was ‘cared for’ before his preventable death, I feel I have had to criticise the NHS, and I’ve been exposed to the worst of spin and poor manipulative communications; but I am not for a minute ‘tarring everyone with the same brush’, nor do I doubt the good intentions of most people (even some of those who seemingly lack competence or skill or support), so please, please do disagree or agree or comment or whatever, or don’t if you’d rather not, but please don’t feel afraid to do what’s right for you.

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