Category Archives: Campaign stuff

Writing what’s happened…

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I’m writing a book. I know. A book. Lofty aspirations. I can barely read one these days. I’m determined to write a book. I’ve never written a book. I write all the time. I vomit out blog posts. I now struggle to write academic papers.

The process of writing this book is generating rage beyond rage. So much so fucking wrong. I’m beginning to reflect more clearly, three and a half years later, on the broader acceptance of the circulating shite. My initial rage at reading the brutal content of briefings, email exchanges and reports is shifting to those who read rather than those who write this content. And say nothing.

Those who received the Background Briefing of Mother’s Blog in their inbox on July 5 2013. A day after LB drowned. Can you imagine? And sucked it up. Those who received the ‘internal’ review‘ by Oxfordshire County Council two weeks before we’d seen sight or smell of the stench of this secret and tawdry investigation. A report chucked into my inbox without warning one Monday morning by an Oxfordshire County Council Social Care Director, strangely off sick for the rest of that day.

Could you try to step outside the smug, judgemental, self serving space you typically enjoy. And challenge this shit? Keep your eye on the human.

It may make you feel better about yourselves. And what you do.

Or maybe not.

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LB’s Fighting Fund. The postscript.

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Been a bit tardy with this, sorry. A few days before leaving for the #CaminoLB, we received a chunk of our legal fees back from Sloven. This means we are able to donate £20,023 of the funds raised to charity. We originally said any recovered dosh would be split between Oxfordshire Family Support Network and INQUEST but feel that the My Life My Choice champs have flown (and walked) the #JusticeforLB flag brilliantly so there will be a three way split. £6,674 to each charity.

Thank you to everyone who donated dosh, sold cakes, chocolates, jewellery, plants, ate cakes, did sponsored runs, head shaves, bus rides, cycle rides and more, bought cards, made pencil cases, bought pencil cases, made notebooks, bought notebooks, held work parties, discos, party nights, donated christening presents, the takings from comedy shows, recorded an EP, made Jack’s cats, bought Jack’s cats, photos and all the other magical efforts people made to ensure that LB was beyond brilliantly and effectively represented at his inquest.

We should never have had to do this [and shame on the Ministry of Justice for relentlessly misguided faith in the coronial system] but given we did, we couldn’t have done it better. Dipping into the remarkable #107days of action collection is a much needed tonic and continues to astonish me. A colourful, random, joyful, diverse, spontaneous and collective effort to get on and do stuff.

LB would have expected nothing less, love him.

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Conflict negotiation and Trump stickers

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I’m in a space of Trump denial. In a 4.5 star hotel booked for €120 for four nights in Santa Cruz for a work gig. An outside lift reminiscent of The Towering Inferno. Loo roll with a dark blue sticker (figure with upraised arms) on the end sheet. This figure appears variously on a cocktail stirring stick (I think) and other stuff in the room.

fullsizerender-3A Trump like figure. Directing me to the start of a loo roll/tug ritual I’ve mastered since I was a tot. There are no cocktails.

On the plane I had an aisle seat. The woman by the window was a conflict negotiator. With no one between us we bonded over her well worn walking boots and my dusty trail shoes. She trumped the #CaminoLB with 15 or so years of walking different trails/adventures.

We totally owned that middle seat as she quietly reassured me about the robustness, independence and power of the Health and Safety Executive. Apparently, being formally interviewed by the HSE is a deeply, serious step. I was reminded of the clear and sensible info given by the police back in the day.

“This isn’t your conflict any longer…” she said.

Just imagine.

History of a GMC investigation

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How long does it take to investigate a doctor? Good question. We referred Dr M to the General Medical Council (GMC) in May 2014. And were asked to respond promptish in a letter dated 19 June 2014.fullsizerender-7

I did so. Because we bereaved families do. There was a second request for information, again with a short deadline.

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Jumping ahead to March 2015. March 2015. By this point, the GMC had got careless in their updates. I was chasing them up for info. A letter in response to a frosty phone call from me. [Hostile… toxic… you know the drill].fullsizerender-9

Nearly two years after LB’s death [he died] and 10 months into the investigation. What does ‘regret’ mean? Where is the attention, the urgency, the respect, the humanity?

In July 2015, thirteen months after making the referral. I was asked to provide a statement. And then sign and return the statement sharpish.

This is your statement and so please ensure you are fully satisfied with its contents before returning a signed and dated copy to me. I would be grateful if you could amend and return at your earliest convenience, so that the GMC may progress its investigation as promptly as possible.

I did as I was asked.

Fast (well very slowly) forward to December 2015.

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A change of staff.  And another expert report (the third by that stage). No explanation why.

15 February 2016. I chase them up again. What is happening? Ah. They’d just received the inquest files from the coroner. [LB’s inquest finished four months earlier. I paid a fiver and got a copy of the files within a week.] Four months…  Another expert opinion was now necessary to consider the inquest evidence (taking 5-6 weeks apparently). Then Dr M would be written to formally and have 28 days to respond. So wrapping up in the spring then by my reckoning.

3 May 2016. I chased them up again. What is happening? The supplementary expert report was now expected by May 30th. The spring wrap up was not going to happen. I replied saying that it would be good if families were proactively updated because it was such a drawn out, painful process. I was told my comments would be passed “to our investigations enhancement team who are always looking for ideas and feedback about our investigations and the effect it has on the relatives of patients whilst we investigate”.

Clearly a bunch of comedians in the GMC. Still. Spontaneous updating kicked in at this point.

7 June 2016. The supplementary expert report was received, investigation complete and the legal team would draft the allegations to be put to Dr M who has 28 days to respond. More spontaneous contact a week or so later to let me know Dr M’s clock was ticking. 28 days to respond.

But Dr M doesn’t do obedience. We all saw that during her inquest performance. She asked for an extension and was granted an extra week.

14 September 2016. The Case Examiners want further expert opinion before they make their decision.

6 October 2016. The supplementary expert report is now with Dr M who has two weeks to comment before the case is referred back to the Case Examiners.

I called my friendly ‘caseowner’ today. The report is now in the hands of the Case Examiners (again) (a lay person and a medic). He was very apologetic for the delay. It’s not good enough I said. He said he’d do everything he can to make sure we get a decision as soon as possible. It shouldn’t take this long, I said. How can it take 30 months to investigate the conduct of one individual? No real answer. And no idea when we can expect a decision.

I’m a researcher. When we apply for funding we produce a gantt chart to show how the research process is broken down and the various milestones and end date. If something happens that means the end date can’t be reached (very rarely) we have to apply to the founder for an extension. And provide a clear rationale/explanation.

It strikes me, the GMC could up their investigation smarts in a similar way:

  • Keep families regularly updated and provide contextual information (e.g., why supplementary expert reports have been requested.)
  • Produce a gantt chart and give experts and other players clear deadlines.
  • Share these timings with families and the doctor under investigation.
  • Make sure the expert commits to the timings or find another expert who can.
  • If an investigation takes more than a year, the exec should be informed and a full explanation for the delay provided.

It really ain’t rocket science.

#CaminoLB reflections

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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

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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

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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.

LB ain’t no Han Solo…

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The makers of Star Wars: The Force Awakens have been sentenced after failing to protect the actors and workers while on set during filming at Pinewood Studio, Slough, Buckinghamshire. Harrison Ford suffered a broken leg and deep lacerations when he was knocked off his feet and pinned to the floor of the Millennium Falcon set, as a prop door closed on him. HSE’s investigation found that there was no automatic emergency cut off, to protect those on set, instead relying on the reactions of the prop operator(s) to bring the door to a stop. Aylesbury Crown Court heard how a combination of preventable events, starting with how the door was designed, led to the incident.

In 2013, Southern Health NHS Foundation Trust (Sloven) failed to protect patients in the Short Term Assessment and Treatment Unit, Headington, Oxford. Connor Sparrowhawk lost his life when he was left to bath alone despite a diagnosis of epilepsy. 

During dress rehearsals on the 12 June 2014 Harrison Ford walked back towards the entrance ramp of the Millennium Falcon and pressed the prop door button to ‘close’ the door. As the cameras were not rolling he did not expect it to close. The production crew member who was operating the prop believed they were in full rehearsal and closed the door. The door’s steel frame was overlaid with sheets of metal and had a tapered edge. It’s operation moved from ceiling to floor in a sharp downward motion. It did not have any automated safety mechanisms to cut out if a person was unexpectedly under the door.

On 4 July 2013, Connor went to have a bath. He didn’t expect to drown. Staff on duty didn’t think about his safety. There was no leadership from Sloven, both locally and at executive level, which meant the recently taken over unit was unsafe.

The risk of the door causing a serious injury or death had been highlighted by one of the health and safety officers for the production company. Foodles Production (UK) Ltd should have put a system in place to ensure the actors and production workers were protected. A different design with inbuilt safety features or using a different material could have guarded against any possible miscommunication on a busy film set.

The risk of seizure activity had been highlighted by Connor’s mother and wider longstanding health and safety failures by Mike Holder. Sloven should have put systems in place to ensure patients were protected. A different system with robust safety procedures would have guarded against any possible miscommuncation in a small unit.

Foodles Production (UK) Ltd, who had pleaded guilty at a previous hearing to Section 2 and Section 3 (1) of the Health and Safety at Work etc. Act 1974, were today fined £1.6 million and ordered to pay costs of £20,861.22 at Aylesbury Crown Court. 

Sloven have consistently tried to wriggle out of any accountability, blame Connor’s mother and ride the waves of executive level corruption over £millions wasted on nonsense training by an organisation led by the then CEO’s mate. 

HSE’s Divisional Director Tim Galloway said: “This incident was foreseeable and preventable and could have resulted in more serious injury or even death. The power and speed of the door was such that, had Mr Ford or anyone else had been struck on the head by the door as it closed, they might easily have been killed. It was only the almost instantaneous actions of the prop operator in hitting the emergency stop that prevented the door from continuing to press down on Mr Ford as he lay on the floor. I think everyone would accept that all the people who work in the film industry have a right to know that the risks they take to entertain us, including when making action movies, are properly managed and controlled.

End.

There has been no statement, report or court case about LB’s death. His death. There was no ‘might’ about what happened to him. No over sensationalised, dramatic rehash of what (nearly) happened with photos. He died a year before Harrison Ford’s knee injury.

The HSE, like the GMC and NMC, clearly have no interest in swift, efficient and timely investigations into the death of a young man with his life ahead of him. LB ain’t no Han Solo. Well, he aint human in the eyes of these organisations. But Harrison Ford is more so. As this salacious guff  highlights.

There is no whiff of respect, dignity, care or humanity around the deaths of LB, Danny, Edward, Adam, Thomas, Sarah, Nico and others. Along with complete disregard for their families. We are simply ignored, dismissed, bullied, battered and, I suspect, despised.

I’ve given up asking, pleading, demanding, raging or expecting any action. Here’s a selection of words. Please order them in any way you choose. Or don’t bother.

Bunch. Jot. Among. Fuckers. Sad. You. You. Of. Of. Self serving. Integrity. With. Among. No.

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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.

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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