Humanity, value, love and sunshine…

Today, as part of the International Day of Persons with DisabilitiesLearning Disability England and Spanish friends held an event in Aviles, Northern Spain, celebrating #JusticeforLB and all those who have died through neglect and indifference. Stitching, artwork, music, dancing, fun and so much more.

Just brilliance…

I felt a right old pang seeing the #JusticeforLB bus/quilt in twitter pics. And reading the shock, outrage, sense and warmth expressed by local kids, self advocacy groups and others…

Valued members of society. Blimey. ‘Reach for the stars’ type aspirations that seem to firmly remain the stuff of dreams here. Despite the continued and brilliant efforts of some/many.

Still. We gotta recognise steps made and there have been some. First, the General Medical Council (GMC). Having proceeded at a snails pace (over 2.5 years so far) in the investigation of Dr M, we were told we’d hear the case examiner decision this week. Sitting at my desk earlier [grey sky, gloominess and an all to0 familiar feeling of delay dread] I steeled myself for another weekend without news.

Then an early afternoon email. Dr M is being referred to a tribunal hearing.

A few hours later, a comprehensive (and spontaneous) update from the Health and Safety Executive (HSE) beautifully headed ‘Connor’.

If you’re embroiled in a serious investigation involving a preventable death [howl], your priorities may well be on the meticulous steps involved in evidence collation/examination. Keeping families informed may seem a less relevant, smaller, almost inconsequential part of the process.

It ain’t.

Keeping families informed demonstrates:

that beyond loved children/sisters/brothers/grandchildren/nephews/nieces/friends are valued.

serious consideration and scrutiny of what’s happened, allowing/enabling slightly easier rest in a harrowing (possibly lifelong) space.

a basic, deeply warming, and too often missed, humanity.

Thank you. To the GMC, HSE and ongoing Spanish based magic. For shining light and sunshine on the way forward.

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The curious incident of the earlier death in the bath

In June 2006, HC, 57, died unexpectedly in the same bath that LB died in. Days after two ECT treatments he was unable to consent to. This emerged during LB’s inquest in October 2015. The coroner, who was clearly surprised to hear about the earlier death requested statements from the key three people involved in HC’s death.

  • The student nurse present in the bathroom

Once I had H supported I managed to pull my alarm, whilst at the same time shouting for assistance. At that point a member of nursing staff entered the bathroom, it was a female member of staff but I cannot recall who it was, simply due to how long ago this incident occurred. I can however recall that [nursing manager] followed that female in to the bathroom. It was approximately 10-15 seconds from H starting to have a seizure to other staff members joining me in the bathroom. By the time they arrived the water was drained and H was still in the bath and [nursing manager] told me to leave the room, which I promptly did. I understand that he did this purely because of my age and experience and he felt it was best to be away from what was happening to H. I did not see what happened next and never saw H again.

  • The nursing manager 

At the time of the incident I know I was not on the Unit.

Later in his statement he says:

I am not sure if I arrived there before Dr J or after but she went into the bathroom and assisted in trying to revive patient. I also cannot recall whether paramedics were already present when I arrived at the ward or whether they arrived after.

  • 3. Dr J (who phoned me the day LB died)

As the attending doctor, I pronounced HC dead.

Later in her statement she says:

On 29 June 2006, I received a phone call from the HM Coroner’s Office asking me if I was prepared to complete and signed the Part 1 of HC’s Death Certificate as I was the attending doctor at the time of his death. They called me again after 15 minutes and informed me that the HM Coroner was not going to ask for a postmortem examination and open an inquest. They informed me that HM Coroner would sign the Part II of the Death Certificate.

The 2014 Sloven ‘investigation’

Another Sloven psychiatrist was tasked with finding out more about HC’s death in 2014. He wrote to the Sloven Clinical Director on March 25 stating:

[Dr J] confirmed that there had been a death some years before Dr M’s appointment. [Dr J] relayed that the circumstances were different in some respects to the epilepsy related death last summer, but similar in that an inpatient on STATT had a seizure in the bath. An attempt at resus followed but it was complicated by the difficulty staff had extricating the man from the bath. He died soon after.

On May 13, the Sloven ‘inquiry’ concluded:

As this was an unexpected death of an NHS inpatient it was reported as a SIRI. There is no evidence of an RCA being undertaken. The Coroner had pronounced the death as natural causes.

This is how you erase a life and a death in full view. Particular lives and deaths. Those that don’t count.

The CQC, Ford escorts and failings

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Oh dear. Andrea Sutcliffe, Chief Inspector of Adult Social Care at the Care Quality Commission, has written a blog that makes my eyes repeatedly blink. And my brain slowly and repeatedly turn and churn. Chucking me back to days of car sickness and towel caught vomit on the back seat of a Ford escort. Here’s a walk through…

Writing about the Panorama programme shown this week documenting abuse at a residential home run by the Morleigh Group. [I’ve not watched the programme. I need to develop guts of steel to do so.] Sutcliffe is both defensive and distancing in her ramblings. 

She kicks off in the first paragraph with the statement “We warned [in a report] that adult social care is approaching a tipping point…” Mmm. A better start, given the content of the Panorama programme, might have been something along the lines of “I’m horrified that such abuse continues to happen in care provision in the UK, despite our continued efforts… We clearly need to do better.”

And continues: “The Panorama footage was not shared with the CQC in advance so I watched like everyone else.”

Blimey. Not sure what the point of this statement is but it doesn’t half ring some serious ‘queen of the land’ bells. A moment or two of self reflection (or a good mate to pull you up on these developing tendencies) might be in order… 

Sutcliffe found that “two moments in particular made me despair”.

Phew. It wasn’t that bad. Only two moments. Allowing reference to the mum test.

“That could have been your mum or mine…”

This was followed by a remarkably weak defence of CQC actions around the Morleigh Group:

“these are services we have been worried about for some time; we had kept them under close scrutiny, inspected regularly and set out what they needed to do to improve through our reports and enforcement action”.

‘Worrying about’ services you know to be failing really ain’t a robust defence. And, clearly, close scrutiny and regular inspections aren’t working. These are people’s lives. A fact that an entire gamut of senior NHS bods apparently still do not get. I ‘worry’ about getting to a meeting on time. About meeting funding deadlines. Not about people (residents) being brutalised.

There’s a muddled and confusing tale of inspections before and after receiving info from Panorama and the (necessary) identifying of “a serious decline in quality”. The CQC never at fault. Failing services brought to public attention by the actions of public and/or journalists have typically ‘just declined’ between news breaking and the previous inspection. Removing any need for scrutiny of the inspection process and what might be missing in terms of identifying failing practice the first time round. Before people are brutalised. Or worse. 

The CQC role section is a cracker. Beginning with unqualified condemnation of the Morleigh Group. Of course. The responsibility lies with them. 

cqc-roleThen the bizarre statement ‘But it is not unnatural when dreadful things happen in the sector’. ‘Unnatural’?  Eh? How far have senior CQC staff become detached from reality?

The following paragraph is also deeply concerning.

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Setting clear expectations? They were kept under close scrutiny? Sigh. The Morleigh Group failed. The CQC failed. There is no wriggle room. Bleating about working hard while failings continue is deeply offensive (and makes utter mockery of the mum test).

Sutcliffe continues to dig a deeper hole. Including an extract from a ‘fairy tale’ letter from a punter which rings even louder alarm bells about CQC processes.

cqc3‘I think I should give you a resident’s viewpoint…’ ‘Recovering from the shock’? ‘Right the wrongs here… ‘ Eh? Really? I’m trying and failing to imagine the concerned ‘resident’, sitting in her bedroom, pen poised, reflecting on how much better life is now staff no longer do ‘wrongs’ to her and other ‘residents’. Nah. I can’t.

The overall message of this ill judged post: it wasn’t the Chief Inspector of Adult Social Care or her CQC kingdom what done it. The failings lie firmly with the provider. [And we all know, sadly, they ain’t an outlier.]

Writing what’s happened…

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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A hard hat, the Playmobile years and stuff…

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I found a Playmobile hard hat yesterday clearing out the rubbish under my desk. Reminding me of the Playmobile years (a good 16 of ’em) and LB’s fascination with emergency services.

Earlier I got this reminder on my ipad.

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I did the slide thing. There was no more.

LB’s birthday. 22 tomorrow.

The pain remains unimaginable. It becomes a bit easier to kind of cover it with layers upon layers of stuff across years. But the stuff remains wobbly and unstable. Sort of useless covering. At the same time, necessary.

You can’t extinguish the pain of a child dying. You have to get on with stuff…

We’ve marked LB’s birthday in random, kind of ‘brilliant’ ways… The first year, an organised and collective celebration at the Long Hanborough bus museum. Year two, Rosie, Owen and I went to the Tower of London. Marking a previous birthday celebration. We caught the final days of the poppy exhibition and grazed the Tower shop. Stocking up on London bus related Crimmy decorations. Tentative steps towards recognising Christmas could happen again.

Last year, viewing the #JusticeforLB quilt at Mansfield College and nosh in Oxford.

Tomorrow we’re getting on with stuff. Rosie is in Vietnam with mates. William and Owen at university. Tom at school. Rich teaching.

I’m working at home. The Sooty tears need space. Though not the space I might have imagined. Back in the darkest of days.

The wooden chest of LB treasures in our bedroom will remain closed. I opened it up for a few moments while packing for the #CaminoLB a few weeks ago. Looking for LB’s pouch of mermaid shells. The briefest glimpse and smell of the preciousness of LB’s life stuff, so carefully packed in those long, hot summer weeks after his death, was like having my heart freshly ripped out [and tossed to a pack of vicious, snarling, loosely chained, NHS guard dogs].

LB was beyond loved. He had an incredibly inquisitive and searching mind. Effortlessly unusual, determined, hilarious and loving. A razor sharp capacity for knowing right from wrong. For calling out injustice. He had a heart the size of a fucking super moon. And smile and laughter that could light up the darkest of dark times. I miss him.

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Conflict negotiation and Trump stickers

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

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 infoA 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

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?]