A whistle stop catch up…

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Been writing like a batshit from hell since Christmas. Weekends and evenings, just thundering away on the keyboard in the back room. Bess often keeping me company on a cushion by my feet. Sometimes not. The book contract is being thrashed out. I’ve pretty much reached the proposed word count; it’s a question of trying to make a tale that doesn’t typically float many boats, into a page turner that grabs attention and makes the likes of LB (Danny Tozer, Nico Reed, Thomas Rawnsley, and many more) human.

I’m on it, with remarkable support.

Other stuff that has been happening (in random/(reverse) order…)

  • The NMC only communicate gibberish so fuck knows.
  • The GMC tribunal date for Dr M has been set for two weeks in August.
  • The HSE are hoping to share further information in the next few weeks.
  • We’re getting an update from the police on Friday evening.
  • David Harling is in the final stages of his fourth animation… this one will include voices… [howl].
  • Caiolfhionn Gallagher was sworn in as a QC this week. Something so unusually right, something so deserved, and so blooming reassuring in terms of the ways in which she will, undoubtedly, continue to use her ferocious intellect, human rights expertise and extraordinary empathy to fight/right as many wrongs as she can in her waking hours.

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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.

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.

LB ain’t no Han Solo…

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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Thank you. From Berlin

Back from a weekend in Berlin with two mates, Ulla and Jorun. Special times. We met when we started working together nearly 10 years ago in January 2007. Ten years. Wow. [Howl]. Two beautiful babies, the death of two dads and one child, moving back to Finland and Norway (before any whiff of Brexit), getting a doctorate, a professorship, a new career in the charity field of women’s work in the Global South.

A weekend of talk about families, love, work… Laughter, health, life and shopping.

On Friday afternoon, in a coffee shop in Kreuzberg, my phone started to ring. I didn’t think it worked in Europe. And it rarely rings. I missed the first couple of calls. Unknown numbers. Something kicking off. Clearly.

We headed for the East Side Gallery. Later, standing outside the closed to the public, iconic television tower, the Fernsehturm de Berlín, my phone was still ringing. Katrina Percy had stepped down.

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Earlier, I’d decided to walk from my hotel to Kreuzberg to hook up with them. A 7km walk apparently. Armed with a cheeky tip from George Julian (for no phone or roaming wifi) I screen grabbed the route in my hotel room and set off early. CaminoLB training. It all went brilliantly until this point (screen grab 4):

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I walked in the direction of the blue dots, post canal, for what seemed like miles. I knew I’d missed screen grabbing one section of the route (because it was all the same road) but couldn’t remember which one, so just kept walking. And walking. And walking. Eventually I stopped at a junction, stared at my next screen grab (again) and a passerby asked if I needed help. He didn’t speak much English, my German is non existent. He looked at screen grab 6, pointed a sharp right turn and we started walking together.

We walked and walked. Managing to share, along the way, that he was Lebanese, living in Berlin and owned an Italian restaurant that did takeaways. And that I lived in Oxford and was going to meet mates. We walked in a comfortable silence after those few exchanges. Eventually, we reached the overhead railway. He pointed to the steps up to it and gesticulated one with his thumb. One stop. One stop…

“Can I take your photo?” I asked. He seemed chuffed.

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I caught the train, one stop, and met my mates. We chuckled (I’ve an embarrassing history of travel mishaps) and had a fab weekend.

This experience made me wonder, again, about the utter, utter failure of Sloven, NHS England, NHS Improvement, the General Medical Council, the Health and Safety Executive, the Nursing and Midwifery Council, the Care Quality Commission and the Secretary of State, to help bereaved families in any way whatsoever.

As always, it comes down to being human.

Thank you.

‘Second victims’ and calling a boat a boat

I’ve lost count of the number of scratchy NHS related tweet exchanges I’ve had with certain human factor fanatics over the past three years. Blooming tedious and always brings in the flying monkey types who don’t engage or discuss but just retweet the too often cultish, Stepford Wifey, non speak.

Sigh.

On a vaguely related note, there has been ongoing discussion over the past two days around ‘no blame’ cultures and accountability. I’ve kind of tried not to get involved but every now and again words like ‘witch hunts’, ‘equal parties’ and the like make me chip in. Earlier today the concept of ‘second victims’ cropped up. Second what…?

Blimey. Turns out there is a body of research around health professionals being ‘second victims’ when a patient is harmed. A concept introduced 16 years ago in the BMJ by AW Wu and apparently uncritically accepted as a ‘thing’. The US based paper shared earlier has the following findings and conclusion around the impact of ‘adverse patient events’:

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Six stages that conveniently sidestep any engagement with responsibility or accountability. What is astonishing – in this paper, I’m sure in the broader ‘second victim’ literature and in the twitter discussions I’ve been involved in or followed as a lurker – is the cosy, untouchable, (sadly too often smug) portrayal of healthcare professionals’ working practice being beyond scrutiny. No accountability (or heaven forbid, criminal prosecutions), here thank you. Move along now. We’re doing our holier than thou, extra special work. If anything goes wrong, we need help to start to enjoy our work again.

And zip all reflection about those  left brutalised by the death of their child, parent, grandparent, family member or friend…

The fakery and indulgence around this second victim nonsense is laid bare in the conclusion of the article where the authors state:

Regardless of sex, professional background or years of experience, all participants in our study easily recalled the immediate and ongoing impact of their specific career jolting event.

A career jolting event is nothing like experiencing the preventable death of a loved one. Please don’t ever pretend it is.

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Tama on vene [translation from Finnish: this is the boat].

Postscript: I’m not ignoring or denying that healthcare staff may/must be devastated by the death or serious harm of a patient here. It simply ain’t comparable to the experiences of families.

The GMC investigation (Part 2)

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Memorial bench lichen at Wolvercote Cemetery. August 2016

Delved back in time to trace the steps of this investigation and it’s worse than I remember. Part 1 covered how, after sending a lengthy and detailed letter of referral, I had to return the consent form to the GMC within 8 days or risk delaying the investigation. Back in June 2014.

So how have the intervening 26 months been filled? 26 months…? Good question.

We started with six weekly updates by letter (good) which tailed off towards the end of year 1.

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Blimey. Another tight deadline for us. Waiting on Sloven as ever. 10 months to get an expert report, get the referred doc to respond and, er, think about what to do next. But at least it looks like the investigation is pretty much finished.

In May 2015 I replied to an email from a journalist saying among other stuff the “GMC should really be any day now (they started last June) and it was at the final decision stage the last I heard, a few weeks ago”.

I look back on these exchanges now and wonder at the utter naivety they reveal on our part. And the (at best) indulgence demonstrated by the – no urgency here, fuck off and wait for as long as it takes, you bereaved families, you – General Medical Council.

The next communication was a letter from a GMC in-house legal person, sent by email on July 15 2015, with this vaguely hilarious subject heading:

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Please respond. That’s all we do. Like obedient (through regular beatings) puppies. Grateful for any crumb of progress. Though this particular crumb was a surprise. Fifteen months after our initial referral:

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What the actual fuck? Why/how does the need for ‘confidentiality’ erase the need for effective and sensitive communication? Is there a collective historical amnesia in operation within these regulatory bodies that means everything that came before is just tossed out with the rubbish? Did no one involved really not pipe up and say something like:

Er, this is a teensy bit awkward given the referral was made over a year ago now. And we’ve led this family to believe that the investigation is pretty much finished. We really should contact them to explain exactly why we are only now collecting statements*.

Nope.

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To be continued.

*We still don’t know.

 

The GMC investigation (Part 1)

Starting a series of posts about our experience of a GMC investigation. I don’t suppose it will be a big surprise to hear that this is utterly shite. I don’t  know what to call it. Journey? Process? Piss take? Shambles? I dunno. You decide. I’ve kind of held off from unpacking this [fill in from above] in case it somehow influences or ‘biases’ the outcome of the ‘investigation’ but have reached a point at which I sadly realise that there is no outcome to muddy, bias or de-rail. Just an inept, unwieldy, careless, brutal, inhumane (no)thing

Back to 2014. When I first referred Dr X after Sloven repeatedly refused to let us know anything about possible staff disciplinary procedures. We got wind that Dr X had relinquished her licence and gone to practice outside the UK.

The referral was harrowing. Having to lay out the reasons why we thought Dr X failed LB (it wasn’t (and isn’t) our job to do so) was deeply painful. Luckily our fab solicitor helped us.

A month later we receive an acknowledgement from our newly appointed GMC investigation officer. Kicking off with a breezy opening:

Thank you for your letter of 22 May 2014 about Dr X.

I will be investigating your complaint and will be your main point of investigation during the investigation.

Note to GMC. We really ain’t complaining about the actions of Dr X. Our son died. Something you seem to erase from this exchange. LB isn’t mentioned until the fifth paragraph. Halfway through the letter:

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This is the grist of the letter. The consent form. Five out of the 10 paragraphs focus on the urgency of returning the consent form. No acknowledgement that someone died. There is no empathy, understanding that we may be in a pretty crap space. The only vague mention of this is towards the end of the letter (before a final demand for the consent letter):

Some people find making a complaint to us a stressful experience… [link to Victim Support]

The irony in this sentence speaks for itself. I think I’ll leave Part 1 here. I returned that consent form before the 27 June 2014 deadline. The only deadline met in this brutal process.

The GMC (are they actually medics?) gave us 8 days. We’re now at 2 years and 3 months with no idea of the end date. Yet another classy bunch.

PS. Hoping I don’t need to spell out the ‘learning’ here but will in a summary post at the end.