#CaminoLB reflections

l1023817-2The #CaminoLB. Following the back end of a yellow shell for 8 days across the Northern route of the Camino de Santiago. Carrying the cardboard #JusticeforLB bus (made by the Boumelha family) to Aviles for an exhibition to be held on December 2. 160 kms of beautiful and constantly changing scenery (beaches, forests, mountains, towns, hamlets, woods, lakes, estuaries) and pathways (cliff paths, foot paths, dirt and gravel tracks, tiled sections, alongside dual carriageways, roads and railways). A backdrop of fresh air (with delicious whiffs of eucalyptus, rotting hay, mint, fig, lemon, orange and hazelnut trees). Constant and unexpected sunshine sometimes blocked by sea mist.

And hills… (mountains?)

Still trying to remember what joker told me the Northern Camino was pretty flat. Or maybe I dreamed it among the low level anxiety before we set off.

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Learning disabled people can’t walk (far?) was a message communicated to us in a meeting a few weeks before we set off. We’d crowdsourced £2k [thank you] to fund a group from My Life my Choice to join us for part of the journey. Sadly the language of social care diffused into everyday talk to threaten what was, essentially, a walking holiday. ‘Public liability insurance’, ‘support vehicles’ and the like, as ever working to bleakly colour and constrain the lives of so many people in the UK.

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As it was, we walked (miles), talked, ate delicious nosh, drank beer and cider, slept in dorms and laughed. The biggest [unanticipated] risks were snoring, farting, bangle wearing, decisions around the use of ‘she wees’ (we didn’t) and cheeks that ached more than legs because of hilarious contributions from John and Dave and, later, Dawn and Shaun.

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Fifteen people and two Great Danes pitched up at different points along the walk, facilitated by the extraordinary efforts of Mariana Ortiz, Alicia Woods and Henry Iles. We met all sorts of people en route intrigued by the bus. More officially we met members of a Spanish charity, Integra, and were welcomed at town hall receptions in Gijon and Aviles. A scruffy, cheerful bunch, carrying the battered but still brilliant cardboard bus, greeted by immaculately turned out dignitaries, film crews and photographers. Visible shock and horror expressed at the deaths of LB, Danny (Rosie Tozer’s son), Thomas, Nico and others.

“This is unimaginable…”

Reflection and clarity completely missing from public office/sector in the UK where LB, Danny and others were simply budgets and burdens.

There was other spontaneous support:

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And snatched moments of contemplation along the way. The enormity of why we were walking the Camino constantly with us. It was fitting that the walk coincided with the Dia de Todos Los Santos (Day of the Dead) on November 1. We marked this with (non risk assessed) late night candle lighting and tears on the beach.

l1024319-2With an irony meter the size of the hills we were regularly scaling, I ‘learned’ a shedload during this adventure. The biggy [howl] was the realisation (or  more accurately, recognition) of how I let LB down. No – no – response to this please (and don’t even go there Sloven, NHS Improvement, Jezza, NHS England, CQC, Health and Safety Executive and the like…) He was waiting for me to bring him home and I didn’t.

I also realised, or maybe recognised more clearly, that you just have to crack on and do stuff. Ditch the doubt, walk away from the blight that is big charity (non) work/public sector shite in the area of learning disability and just do stuff. Mencrap, NAS, Scope and other money spinning waste of space bastards totally miss the point. The conversations, chat, discovery, self reflection, delight and joy we shared/experienced across the journey – among those walking, people we met, and virtual campaigners – underlined this. Those who should do, simply ain’t going to. In the UK, anyway.

Spending time with Dawn, Shaun and Paul generated insights into life as a learning disabled adult. Dawn’s stories of living in a Mencrap home in the past were harrowing and her comment after an uncharacteristic stern moment – ‘Oh, I’d make a good carer’- was chilling.

I was surprised at how far we were able to walk. And the absence of complaint. There were some struggles, a few blisters and chafing (a story for another day). Endless uphill walks or clambering down rocky, chestnut and wet leaf strewn paths. I worried about the pain the walk would inevitably involve – I ain’t no walker – but it didn’t materialise. I wouldn’t advocate not training for a substantial walking trip but clearly backbone, guts and resilience go a long way.

It was astonishing how much we all gained from the experience. I don’t know whether this was the walking, the scenery, pilgrim life, the company or the underlying campaign… but there was an exhilaration, emotion and depth of something remarkable and immensely powerful. As Alicia posted on Facebook:

“It’s hard to know what to do after the incredible #CaminoLB. Such a powerful, hilarious and moving week that will stay with me forever.”

Whatever it was. It worked.

#JusticeforLB. Walking the walk.

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Flight of the Camino

Not long to go now before we set off on the CaminoLB. The route is here (it’s a bit anarchic organic and loosely formed). What we know so far: George Julian, John Williams, Dave Griffiths and I (me?) are setting off on Tuesday evening on the 24 hour ferry from Portsmouth to Santander. With the #JusticeforLB quilt and bus. Postcards of Awesome, the #JusticeforLB flag and anything else we can tuck in our pockets and socks.

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We hand the booty (other than the bus and the flag if I can find it) over to Alicia Wood in Santander in advance of the #JusticeforLB exhibition planned for 2 Dec. We start walking with the bus first thing Oct 27 with a cheeky 37 miles to cover in the first two days. Luckily John and Dave are doing those two days. Two comedians who are planning to train by doing a few laps of the deck on the ferry. John has Body Glide anti-chafe cream and Compeed. Dave will be wearing his crown.

Various people will join us along the route. With a build up across the final three days when five people from My Life My Choice (including Dawn Wiltshire, Paul Scarrott and Shaun Picken), Rosie Tozer, who is walking in memory of her son, Danny, and Ruth Glynn Owen join us. Paul points out that it may be the first time learning disabled people have done anything like it. I think it probably is. Demonstrating the limitations of the big charity guns – Mencap, Scope, National Autistic Society – who typically manage, orchestrate and erase the talk, enjoyment and involvement of people in a relentless drive for self promotion and self serving nothingness.

We’ll be meeting with Spanish school kids who are making gingerbread figures and local dignitaries during those last three days. Finishing the walk on Nov 3 in Aviles. Dropping the bus off where the exhibition will be held in December.

This afternoon my sis, Agent T (pitching up at Poo next Saturday to walk the remaining walk) and I caught up with packing plans. The weather forecast is spectacular. Coats/waterproofs ditched. Ipads/laptops still up for grabs (well, for me anyway). Various devices for having an unobtrusive piss en route to be tested. I’m running with some £4.99 jobby from Go Outdoors…

With the help of behind the scenes organisation magically sorted by Alicia, Mariana Ortiz and Henry Iles [thank you] we may well have the experience of a lifetime. Laughter, tears and, hopefully, more laughter.

Here’s hoping a few laps of the Brittany Ferry deck on Wednesday will reap rewards.

LB would bloody love it.

[And there’s always time for anyone (er, cough cough, Mencap, Scope, NAS… or whoever) to join us. Why not smash the boundaries and just do summat?]

Jeremy ‘witch Hunt’ and the mother blame

Was reminded all week about the terrible mother blame that went on across LB’s inquest which was held a year ago. Just a few tasters:

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Unspeakably awful. Again my brain weeps This is the NHS…

Sadly, blaming us has been a consistent theme since LB died. Sloven have sent extraordinary briefing reports to all and sundry blaming us for hacking into staff twitter accounts and trolling. Oxfordshire County did a corporate number with their sordid secret review of me, while one of their commissioners wrote a terrible letter tearing me to shreds (I’ve never met the woman who is apparently deeply christian).

Jeremy Hunt seems to have joined the blame brigade now. He was interviewed by David Fenton in a bizarre piece on BBC South last night. Between them, pushing a ‘witch hunt’ version of events. Fenton even described how Sloven staff are too scared to go out with their Sloven lanyards on for fear of reprisal.

Wow. A witch hunt. An unfounded persecution?

For the record.

  1. There was no ‘witch hunt’ after Percy. 
  2. She didn’t form part of our Connor Manifesto.
  3. We have consistently called for the resignation of several exec/non exec members (Gordon, Spires, Grant, Berryman, Stevens…)
  4. Percy, and the above, should have gone a long time ago.
  5. Our campaign has always focused on the executive board (and LB’s responsible clinician) and not the 9000 or so staff members, many of whom I’m sure do a brilliant job.

I wonder why we are blamed. It’s fucking outrageous. We’ve (collectively) done more to generate awareness of learning disability issues than major charities with enormous budgets. For free. #JusticeforLB has been like a second, full time job over the past 2.5 years. We’ve worked our socks off. We’ve been told we’ve encouraged other families to campaign, and fight for accountability for catastrophic events harming their loved ones. What happened to LB is taught on various undergraduate and post-graduate courses across the UK. School kids have written about him for homework. We’ve generated a shedload of brilliant resources (a justice quilt and other art, blogs, lectures, songs, short films, animations, the LBBill, the first ever inquest tweet archive and loads more… see below). We’ve been consistently reasonable in the circumstances (with liberal swears).

The families and ex-Sloven governors have shown remarkable restraint given everything they’ve endured. Peter Bell is under investigation by the trust (I know) and has declined to sign a gagging order in order to see the draft report of evidence against him (I know). (There was no investigation of Malcolm Berryman’s actions in sharing the Mazars review with his son before publication). John Green has been a model of reasoned, informed, restraint in trying to highlight failures in both Sloven and the wider organisation of the NHS [click here for the abridged version of his report]. Repeated appearances on national and local news by Richard West, Maureen Hickman, the Hartleys, Angie Mote and others have been remarkable for the consistently careful, considered and, again, restrained commentary in the face of such (continued) horror. The behind the scenes email exchanges are reflective and respectful.

It’s a very dangerous precedent if any member of the public who asks questions or seeks lines of accountability from those in power is dismissed as a witch hunter.  Cheap and lazy journalism by the likes of David Fenton, who has failed to have even analysed that which has been put in the public domain by campaigners, is simply wrong. The serial failings that we, and other campaigners and journalists have largely unearthed sit well and truly on the doorsteps of the Sloven board (and some governors), Jim Mackey and the NHS Improvement gang, and, er, Jeremy Hunt.

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An antidote to the above; some #JusticeforLB magic. The middle pouch is an Arabic justice pouch, the bus ipad holder is made from material used to decorate a lorry driver’s cab and the third pouch holds the complete music for Tippett’s ‘A Child of our Time’ to celebrate the performance in memory of LB at Warwick University in June. Brilliance.

Jeff Vader and getting it right

The day after posting LB ain’t no Han Solo, I received an email update from the Health and Safety Executive (HSE). There’s a pattern here that wouldn’t take the brightest social science analyst to identify. That is, being called out on social media for crapness can* be an effective mechanism to generate some action. This is a good thing. I mean let’s face it, us public ain’t typically served well by ‘official’, pigeon post type PALS and PHSO processes. (These organisations shouldn’t need calling out, of course. That we’ve consistently had to ask for updates over the past 3 years of so is an indication of how poorly families are typically treated.)

The action or response these blog posts or tweets generate varies. We’ve typically had stilted and clipped non updates that I read as woven with “vexatious” whisperings and stabbing needles. Them pesky parent-type stuff.

The latest communication from the HSE included acknowledgement and recognition that we shouldn’t have had to ask for an update. Good. A straightforward sorry, an explanation for the delay in updating and an update. Including notice that the investigation will be continuing beyond the expected end of October deadline. Not so good. But when you get an explanation for this delay it’s slightly easier to suck up. I replied with a brief, Han Solo, related question.

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Today I received a detailed explanation of the complexity of different investigations and differing time frames. This was followed by a second email again acknowledging a failure to keep us updated and some reflection on what the experience must be like for families. These emails have reduced my intense rage about the length of time this investigation is taking. No mean feat. I feel reassured and relieved.

This respect and decency stuff isn’t complicated. Treating people who have been battered into unspeakable spaces by the actions of  health or social care organisations as human, with honesty, care and thoughtfulness shouldn’t be so difficult. Hopefully the other involved strands of the NHS can learn summat from this.

1. Update families regularly (even if there is no news).
2. Try and put yourselves in their shoes. Imagine what it must be like.
 

LB funnily enough wasn’t a Star Wars fan. But he laughed until he cried each time he watched this clip. Which was a lot.

*The effectiveness of this mechanism needs scrutiny. There’s a social media campaign type ‘labour’ that needs unpacking to identify what works and what doesn’t. To help families and campaigners [and NHS and social bods] be more effective.

An exemplar in how not to

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An American sociologist, Harold Garfinkel, famously encouraged his students to go out and deliberately breach social rules (like being very shouty in public) to make visible the strength of these unwritten rules. When I was a student we could do this for one assignment and report how those present responded, or write an essay. I didn’t have the nerve to do the former.

The sacking of Katrina Percy (and the earlier unfoldings leading up to this) has been a kind of breaching exercise. Making visible the deep flaws in the organisation of the NHS. The internet/social media didn’t exist when Garfinkel developed his breaching experiments. These days, the ripples of (public sector) ‘rule breaching’ spread far with an unimagined immediacy. People are rightly outraged about the £200k pay off. How patients denied treatment or operations because of the cost must be feeling about this news is impossible to imagine. It’s simply obscene.

The handling of the Sloven debacle is worse than extraordinarily poor. On December 10 2015, Hunt stood up in the Commons and promised a series of measures in response to the publication of the Mazars review. The CQC so far seem to be sticking to their gig (albeit without using the powers they have effectively). NHS Improvement (NHSI) were tasked with sorting out the rot among the Sloven exec. They have bungled this task spectacularly. The wrong person was appointed to troubleshoot (alarmingly, Tim Smart has always maintained he contacted NHSI offering his help after seeing Tom question the board on BBC News). It was clear NHSI missed an opportunity to appoint a clear headed, sharp thinking, deeply experienced, no nonsense type of person.

Smart, as we know, failed to lift any stones (leaving it to campaigners and journalists to reveal the howlers that were in full view with the sending of the odd FOI request or ten), and decided the board were fit to practice. Etc, etc, etc.

What an almighty fuck up. The NHSI press statement is simply embarrassing.  I’m reminded of Shaun Picken, a trustee of My Life My Choice asking Percy: “Katrina, why didn’t you ask for help? You clearly needed it”, at the January board meeting. NHSI. You clearly need help.

I’m a lay person with no experience in public sector management (and currently on leave in Berlin for the weekend…Brilliant timing as always) but it strikes me there are some fairly straightforward things that should happen. Including:

  • Thorough scrutiny of financial irregularities around the Talentworks contract which, I’m sure, would provide evidence that Percy, supported by a bunch of longstanding exec-mates, has mismanaged public money.
  • A thorough review of the Sloven exec and removal of the remaining muppetry (Spires, Berryman, Stevens, Gordon, etc).
  • The appointment of replacement execs with mental health and learning disability expertise.
  • Full engagement with the public and a clear demonstration of a willingness to be open, transparent, honest and robust.
  • Stop relying on ‘reassurance’ and demand evidence. A reliance on ‘reassurance’ contributed to LB’s death.

Jim Mackey, Jeremy Hunt and others, you should feel ashamed at the handling of this. It’s an exemplar in how not to.

Weepage, seepage and who cares?

Dunno why, maybe the anniversary of LB’s inquest, but I’ve been having a weep fest over the past few days. I think about LB all the time. He’s never more than seconds, occasionally minutes and very rarely an hour or so, from my waking mind. I’d got to a state (hate to stage this grief stuff) where I could think about him in different ways. With the occasional, typically left field, gut punching moment. Sparked by a word, a smell, a thought, sound or memory. Moments of near meltdown (I know, the irony), fright, (at the) sheer horror, brutality and worse.

This week I’m back to just crying. Or weeping. Or something else. I don’t know what to call this thing. Maybe weepage. A sheet of tears. There’s no movement. No sort of sobbing and dabbing with a tissue action. No drama. Just moving wetness.

I cried last night re-reading my older sister’s handwritten letter to each Sloven board member. In 2014. Two years ago. Can you imagine?

I cried looking through another pile of photos that have shifted to the surface of home clutter this morning.

I cried sitting at the back of the Oxford to Heathrow coach this afternoon. For pretty much the whole journey. Watching a stream of heavy haulage lorries and coaches. After receiving an update from the General Medical Council. The supplementary expert report is now with Dr M (again). She has two weeks to respond before it goes back to the Case Examiners. Another never ending story.

The Nursing and Midwifery Council investigations? Who knows. Tumbleweed.

We were told, months back, during a meeting with Norman Lamb and the Health and Safety Executive, that some report was with some panel and we would hear something in October. No doubt we will have to chase up any (non) news ourselves.

I think my new tear configuration has (re) emerged because of the utterly shameful banality  of the public sector response to what has happened. A year ago an inquest jury determined that LB died from neglect. He should not have died. He was effectively killed. And nothing has happened. And a recognition that this sustained cruelty can’t continue indefinitely. We (a collective #JusticeforLB we) could not have done more to counter the darkness of the #NHS and social care at its worse, with light. And brilliance. And there is still no accountability.

I wonder where, in the structure of the NHS, effective support and attention exists for brutalised families. Who should know the answer to this. And why the fuck I’m having to ask.

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Talentworks, buses and the Oxford Bishop

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So the Talentworks contract with Sloven is over. £5.5m of public money flushed down the toilet but at least that particular leak is plugged. Hopefully the National Audit Office will scrutinise the whole, grubby process and take action. £300k to £5.8m is simply scandalous. As is an ex-CEO doing a made up, very part time, job for nearly £250k.

Jim Mackey must be feeling a little bit hot around the collar given everything that’s unfolded. We couldn’t have clearer evidence that NHS Improvement are a waste of space. Appointing Tim Smart who bizarrely refused to engage with what was under his nose (or families), gave an ailing and flailing board a clean bill of health then resigned without notice, was not a good move.

In other news, it was the inauguration ceremony of the new Bishop of Oxford earlier. The buses were pretty much backed up to the ring road but there was a real buzz among strangers on the High Street who wanted to know what was going on.  I suspect there was a similar buzz among Sloven staff this afternoon. And a huge sense of relief that they would no longer have to endure mandatory Going Viral nonsense.

Onwards and (hopefully) upwards.

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Antelope House and those old tear waterfalls

I’m stripping this post back to the minimum in an attempt to try to help Jim Mackey, Jeremy Hunt and others understand the gravity of what was/is happening here. Screen grabs, minimal text and links.

Going back to 2011 when the CQC found major concerns at a Sloven run mental health unit, Antelope House, after the death of Michelle Connor.

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In response to this inspection, Percy pitched up to a Hampshire and Southampton Health Overview and Scrutiny Committee Joint Meeting to answer concerns. She typically dismissed the seriousness of the inspection report. The deeply inappropriate ‘we’re no worse’ excuse dragged out five years later when the Mazars review was published:

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And went on to state:

Overall, a shift in the culture of the organisation was needed, and bad practices of the past needed to be left behind.

Bad practices of the past, eh? A set of responses were presented, summarised here (worth reading in full if you can bear to):

  • Internal inspections were currently going on across the whole trust.
  • An audit and completion of all care records was completed within 12 hours of receipt of the CQC draft report.
  • Care plans are now subject to regular, unannounced spot checks.
  • Implementation of immediate training and training scheduled for the near future.
  • The locked door policy was not being fully implemented.
  • Patient experience is important. Sloven want to return the trust and confidence of the public.
  • And a load of other utter bollox. Including training is embedded into practice, “a very senior nurse”has been brought in to provide the clinical leadership needed. Oh, and “The CQC unfortunately did not speak with service users whilst undertaking their inspection.”

Recommendations that have been regularly and repeatedly ringing ever since. With each death and inquest. Oh, and there was the usual evidence of the (Percy) Sloven way. A focus on ‘awards’ and glitziness to distract from the serious issues.

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The meeting ended with blankety blank type shite.

A year later Hannah Groves died…

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And other unfoldings…

ah3In the meantime, Sloven took over the Ridgeway provision in Oxfordshire. Apparently experts in mental health and learning disability provision (despite all these experts having left in the previous year or so). Ms Percy was huffing her puff and stuff online, regardless.

Once the lucrative contract was signed, Sloven withdrew from pretty much any engagement with the Oxon services. The white noise they talked about in the 2011 meeting didn’t translate into action. Just words to appease vaguely interested audiences. The 12 hour urgency type stuff was fakery. The exec never took the very obvious health and safety failings seriously. And haven’t since.

Here we are. Five years on. Deaths. More deaths. And closure.

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However, Southern Health did not believe that the areas requiring improvement were of a serious nature, and were not of the scale seen on recent documentary programmes (e.g. Panorama programme on Castlebeck). [2011]

Our beautiful, beautiful boy. A life (one of many) snuffed out because the Sloven exec (and those who should have been keeping watch from above) simply didn’t.

There was a ruling yesterday by the judge in the horrific Alton Towers crash case. So much resonates here.

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Sloven’s catastrophic failure to assess risk, woefully inadequate safety procedures, failure to communicate and being a shambles explains why LB, and so many others, died. Well, with a hefty dose of arrogance, an obsession with reputation and awards, and stupidity. Typing this through a now familiar waterfall of tears and rage, I don’t understand why we are still fighting. Why people are spending their time digging through this shite, committed to exposing the grubbiness that is publicly available, when so many are paid to do so and don’t.

If anyone from NHS Improvement, NHS England, the Health and Safety Executive or Department of Health (well anyone, really) could explain why we still have no answers or accountability over three years after LB’s death, please do.

This is state sanctioned cruelty.

Candour, what candour and the Camino training

Back in March 2016, the Sloven CEO included this section in her report to the board.

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Today this family received the response to the complaint they made about their treatment by Sloven, and Chris Gordon. There was no ‘contact with the family throughout this very difficult period‘. Instead, Sloven, true to form, continue to make something so agonisingly painful, nightmarish and brutal, even worse.

Just a few lowlights from the report:

  • The complaint was investigated by Capsticks who regularly work with Sloven and other NHS trusts.
  • Complaints about inappropriate comments made by Chris Gordon were dismissed because he said he didn’t make them.
  • The investigators couldn’t read board meeting notes relating to the death of this person because discussions were during the ‘private’ part of the meeting.
  • The delay of two months between Tim Smart receiving this report and the family receiving it today was because it was with Chris Gordon for reviewing. [Even though the complaint was in part about him and despite his current secondment to NHS Improvement.]

Candour and transparency clearly ain’t reached the southern regions yet. And another family left complaining about complaint handling and facing the dire Ombudsman route.

It shouldn’t be like this.

In more cheerful news, the #JusticeforLB cardboard bus has been expertly revamped by LB’s grandad and the My Life My Choice trustees began training for the #CaminoLB today.

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This film of their first walk is blooming brilliant. Keeping it real, funny, passionate and determined.

In search of rights and colour…

We must be getting closer. Surely.

An exemplar in absurdity (and conkers)

A sort of follow on from the (updated) The Talented Mr Martin and viral impact post. Underpinned by continuing incredulity at the removal of the Talentworks website. A ‘leadership’ consultancy with the tagline:

Meet the Talentworks team… hired for our large brains, love of psychology and impeccable dress sense.

Yes. Really. Well, and at least £5m of public money.

In the continued absence of any apparent scrutiny from NHS Improvement and others who should, we’re left digging deeper into shit we should never have to go near.

Talentworks. A virtual collective of people with large brains… etc have not only been getting obscene amounts of dosh from Sloven. They’ve also been working closely with Thames Valley and Wessex Leadership Academy (TVWLA). An academy led until last year by Katrina Percy.

I’m rubbish with figures but the Talentworks ‘blah blah’ work with the Thames Valley bunch (Financial Summaries available here) seems to involve a shedload of dosh for the two years Percy led the academy (around £500k and £370k)  dropping to around £20k after she stepped down. [As an aside, how could Percy dismiss Mike Holder’s safety concerns while championing Chris Martin and his jibber jabber? [howl]]

A brief browse of the Talent Management pages on the Thames Valley Leadership Academy pages:

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A teeth achingly meaningless statement. Just noise. How the Wessex leadership gang allowed this to be published on their website makes me want to weep. I’m left wondering (again) is this about stupidity, incompetence, fear, corruption, bullying, greed, narcissism or simple slumbering?  The focus on this hocus pocus crap, while staff were left without leadership, untrained and unsupported to provide the most basic care to keep LB and so many other patients alive [alive], is haunting.

More bollocks…

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Greater pipeline intelligence? A driver of culture change? It’s like the Stepford Wives meet NHS England.

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I’ve not read this blinky blonky table yet. The headings alone suggest nonsense. I just want to know who authorised payments for this ‘work’? Where were the internal (and external) audit processes? Did no one ask what is this about and is it effective?

Did Talentworks really have a blank cheque to do whatever?

What are the links between Chris Martin, Katrina/Iain Percy and others?

What does it mean that Talentworks have withdrawn their website?

What the actual fuck?

Here’s a photo of conkers we collected in the park earlier. I bloody love this photo. These are conkers. As simple and uncomplicated as.

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