A breach too far

I’ve spent the day since talking to the Nursing and Midwifery Council (NMC) at lunchtime shaking uncontrollably, swearing and raging, laying on the settee in silent tears and, for the last two hours, drinking beer and now wine. ‘Luckily’ we are on annual leave so I can do all these things.

I think it’s fair to say that since Connor died we have been treated in a remarkably consistent and appalling way. We’ve had no equivalent of a police liaison officer to help us pick our way through the wreckage of his death and our shattered lives. We’ve had no support, kindness or understanding from any of the organisations implicated in his death (the Trust, the county council, the clinical commissioning group, NHS England or NHS Improvement).

Instead we’ve been smeared, pissed and shat on in extraordinary ways.

In addition, we’ve been expected to attend numerous meetings with the ‘great’, good and mediocre to try to improve practice. All at our own expense, all in our own time and not one single meeting held in Oxford where we live. We have been chewed over, sucked dry and spat out.

I think we’ve behaved pretty well in the circumstances. I’ve only started using the word cunt regularly in the last few months or so. It trips off my tongue now. Rich has stormed out of the odd meeting or raged down the phone to the odd Chief Inspector or two, but in the circumstances small fry really.

We’re a family, like so many others, who have experienced the worst possible happening; the preventable and brutal death of a beyond beloved son, brother, grandson, nephew, cousin and friend within the hallowed walls of the NHS. A young man with his whole life ahead of him, discounted as human because he was labelled as learning disabled.

We’ve sucked up delay after delay, obstruction, deceit, denial and mother-blame on a scale that is more than enough to generate long term mental ill health. We’ve battled on with remarkable support from many people. Dealing with the death of a child is horrific. Dealing with the accompanying shite and recriminations that come with the bullying, defensive and self obsessed practices of public sector organisations (and individuals therein) which have failed, is simply brutal.

Today I was told, after an opening filler of no substance whatsoever, that the NMC had ‘accidentally’ shared our personal details with the six nurses under investigation back in November 2016.

There was no whiff of an apology until I asked for it.

A couple of hours later, when I was able to speak, I found out that this data breach involves:

Our home address, my mobile number, email and bank details, my mum’s name and phone number, Connor’s date of birth, NHS number and his dad’s name and phone number.

 

The redaction policy of redacting personal information had been ignored when it came to our personal information. There were other redactions. From this, we can only infer that we, like Connor, were discounted as human. How else can you redact some personal information and not others?

This apparently came to light on June 26 2017. Over two weeks ago. Five out of the six nursing staff (or their counsel) were contacted by email on Monday with a request to destroy or return the disc containing this information. Four out of the five have apparently acknowledged receipt of the email with no accompanying action. The sixth staff member who only has a postal address hasn’t been contacted yet. The NMC haven’t bothered sending a letter.

Our personal information is still out there live and kicking.

The senior member of the fitness to practice team I spoke to after the first call spouted root cause analysis and learning shite after a delay of an hour between calls while she bothered to get the relevant information to hand to answer my questions.

I can’t articulate this violation other than in tears. A flood. The level of contempt and disrespect is generating weeping in a way I thought we’d kind of crawled beyond. A return to the Sooty tears. Almost worse in some ways because it is so fucking wanton.

The basics here – like don’t leave a patient with epilepsy to bath alone in a locked room and redact the personal details of the dead patient and their family when sharing information –  don’t need investigation or root cause analysis.

And the tears kick in again.

 

 

Tribunal torture

This post builds on Five tribunals and a dress code. Sadly.  A few weeks ago I had a three hour (yes, three hour) interview with General Medical Council lawyers. This grilling (they warned me in advance it would be) involved a barrage of questions in tortuous, micro detail.

It was grim. Documentation (and this blog) had been mined for any inconsistencies.

As I’ve banged on before, staff have legal representation at these tribunals and these barristers can ask anything they want of witnesses. Witnesses (including bereaved families) are not allowed representation. During the interrogation, in a hotel meeting room in North Oxford, I scrawled this:

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I went home afterwards, instead of to the work meeting I was supposed to attend.

This morning the Nursing and Midwifery Council (NMC) called to update me on the six nursing tribunals due to be held this summer/autumn. A preliminary meeting was held last week apparently and the independent chair agreed to:

  1. Lump the tribunals together to make one long one hearing.
  2. Postpone this until May 2018.

Apparently the NMC opposed this delay but staff representatives disagreed with a possible January 2018 date.

So, another year and another tribunal to dread. The brutality of forcing us to revisit what happened for at least another 12 months.

We had no one at the meeting to draw to the chair’s attention the utter inhumanity intricately woven into this process.

We simply don’t count.

 

The pigeon in the chimney

Nearly two weeks ago now, we had a pigeon in our chimney, in the bedroom. It took ages to come down, bringing years worth of chimney shite with it. The fireplace has one of LB’s bus pictures in front of it and once it landed, the pigeon just calmly poked it’s head round the side of it. Rich was ready with a cloth to catch it and release it out of the window. It did a massive loop around the houses then flew away.

Ten minutes later, the Health and Safety Executive rang. They said they will be prosecuting Sloven under Section 3 of the Health and Safety Act. Tears. The following day, Fran rang. She had been at a meeting with Oxford Health and commissioners where it was confirmed that, after quite a battle, the Slade House site would remain with Oxford Health. She said there were tears. More tears.

Jim Mackey, NHS Improvement, told Andrew Smith, MP:

“Southern Health will not receive a cash consideration and will record a non-operating ‘loss’ item in its accounts.”

I think that’s pretty much it now. Other than a shindig at the Oxford Magistrates court when the prosecution is held.

Thank you. I think we all did a bloody good job, as Connor would totally expect.

Five tribunals and a dress code

Coming up this summer; a two-week General Medical Council (GMC) tribunal for the consultant psychiatrist to be held in Manchester in August, and four Nursing and Midwifery (NMC) tribunals.

  • Four years after LB drowned, alone, in an NHS bath.
  • Over three years after an independent report found he died a preventable death through neglect.
  • Nearly two years after an inquest jury determined he died through neglect and serious failings.

It’s all going on this summer. The pipers are suddenly calling the tunes.

The NMC sent me (Rich has dropped off these communications without explanation) four identical letters last week which open with a cheery:

On behalf of the NMC, thank you for your time and commitment in helping us to investigate this case; your help is greatly appreciated. Without the evidence provided by witnesses we would not be able to safeguard the health and wellbeing of the public. We recognise the valuable contribution you have made to this investigation.

‘This case’? ‘My help’? ‘The valuable contribution…‘ Really?

Is humanity bypass a criteria for a job at the NMC?  I’m all for change but spare me the vacuous Dambuster shite. LB died.

The letter continues by ‘asking me’ to provide my unavoidable (in bold) commitments in June, July and August. There is no reflection of the enormity of demanding these dates (after years of crap all action) so breezily, four times over, with a response deadline of ten days. No. The reverse. If those pesky bereaved parents don’t get their act together to respond, there is a simple fallback position:

If we do not hear from you we will assume you are available and proceed to schedule the hearings.

I’m then directed to a lengthy weblink which I have to retype from the letter to find out more (there is so much so wrong here but seriously, if you ain’t sending a letter electronically, a URL is as good as fucking useless).

It gets worse.

At each of these tribunals, the staff member is represented by a barrister who can ‘cross-examine’ the witness.

Giving your evidence in person also allows the opposing side, if present at the hearing, to ask you questions and test your evidence. This is vital to ensure a fair and thorough hearing.

The opposing side? I don’t think that the staff who should have been looking after LB are on an ‘opposing side’. What a terrible way to frame the process. But if there are opposing sides, surely both (or none) have recourse to legal representation? (Witnesses are not allowed representation). How can this possibly be a fair or thorough process?

The concerns and focus of these regulatory bodies should be on the integrity, professionalism and abilities of the people they register, not putting (bereaved) members of the public through trial and examination. There’s a shedload of evidence to draw upon to do this, including two weeks of inquest recordings, staff and other witness statements.

James Titcombe described his and his partner’s experiences earlier:

I have spent days giving evidence to both regulatory bodies, checking this evidence, finding supporting documentation and waiting for action. In the next few months, I’m expected to travel to Manchester and wherever in the UK the four NMC tribunals are held (using annual leave and making sure I’m available at all times), to be cross examined by five different barristers.

You can fuck your denim, sportswear and trainers ban.

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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The solicitor, the student nurse and scholar activism

On Tuesday Katherine Runswick-Cole gave her inaugural  lecture which touched upon numerous highlights of her work over the past 10 years or so. Well worth a catch up if you missed it. One of the things she talked about was #JusticeforLB and the responsibility of academics to be scholar activists.

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The disability studies assemblage certainly did, as she highlighted:

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I particularly loved this comment.

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I remain chilled by the obscene focus of Sloven and Oxfordshire County Council on reputation immediately after LB’s death. And the eight months or so it took before his death made it into national news. That ‘random’ people now know what happened can only be a good thing.

Yesterday, a second year learning disability nursing student left a message on the #JusticeforLB facebook page. He wanted us to know how much of an impact LB’s story was having on his, and other students’, education.

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He went on to say:

Nothing could ever make what happened ok. It will always be a tragedy. But LB is shaping the education nurses receive. He is changing the way people work who have been nurses for years, and most important of all, LB is making the lives of other people safer but ensuring they get the care and support they need.

[Sob]. Spot on. Nothing can make it ok. And I so agree about the impact and change. I’m not surprised in some ways. I mean, remarkable campaign magic has included walking a cardboard bus 100 miles along the Camino de Santiago in memory of LB, Danny Tozer, Thomas Rawnsley and others. In the past few years, we’ve collectively managed to prise open a [new?] space for the scrutiny of, and engagement with, preventable deaths (and, hopefully, non lives) of learning disabled people. l1025096Sadly, this focus is not replicated among relevant health and social care bods. We need no more evidence to know that it’s time to properly address and act on the barbaric and inhumane treatment of certain people in the UK. The CQC swerved from this opportunity with their recent deaths review. There seems little effective action from other parts of the NHS (or social care). Just the inevitable, systemic compromise as always. With nothing inevitable about it.

Anyway, here’s to Prof Runswick-Cole, scholar activism and a new generation of brilliantly enlightened nurses. We salute you.

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Johnny Rotten and the legitimacy of anger

Rich met me at the bus stop after work yesterday. I was feeling a bit low. We wandered home across the London Road.

“You seem a bit despondent…”
“Yeah. I am. Fed up with raging. And the continued shite that just doesn’t change. Not sure I can bear another year of being so angry... I’m weary of being constantly angry.”
“That’s what happens.”
“What?”
“People get worn out. They stop being angry. But it’s right to be angry. Anger drives a refusal to accept the low bar, the unacceptable. It drives action and critical engagement. Without it, issues are reduced to vague problems too easily dismissed.”
“Hmm…”
“Like Johnny Rotten said, anger is an energy…”

Minutes after getting in, an old mate turned unexpectedly. Her son a year or so older than LB. We had a catch up over mugs of tea and a chunk of Christmas cake. She filled me in on the horror that has been her family’s recent experiences of adult services. Not a pretty story. But it so rarely is. We reflected on the way in which 18+ years of loving and bringing up our kids (along with their sisters/brothers) can be summarily dismissed or problematised by health and social care (with the eye watering irony they offer nothing in its place). The misuse of power and erasure of love and more (the right words don’t exist) too often, just extraordinary.

Before she left, she said;

Do you remember when N and LB were young? And we were so optimistic about the future…

Blimey. I’d forgotten. We were. There was a group of us parents. A right old bunch of budding agitators/activists [just mums really…] All with kids the same sort of age. So utterly convinced we could change what we thought was an already changing world to create rightful space for our kids. To live the lives other people lived. I was shocked to remember this, and that I’d forgotten.

Later, one of LB’s school mates posted two photos on Facebook from years ago. LB was sitting among the small group of kids. He looked so chilled in one and smiling, as he saw the camera, in the other. It was clearly before the fake, fixed cheesy Wallace grin period which lasted a good year or so. Until my relentless photo taking became commonplace again.

Rich is right. Anger is necessary. Or you get sucked into the malaise that is the myriad words/excuses/bullshit/reviews and recommendations that health and social care bods endlessly come up with. Non existent change… what’s about to happen. And never does. At best, a kind of hope soup. That never leaves the kitchen. And feeds no one but the cook.

So 2017. Another year. With anger. And focus on brilliance. The remarkable. And humour. That rightful space is still there, somewhere. We just have to collectively, and persistently, nudge the crap out of the way. And never stop saying this is simply unacceptable.

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Bindman’s published their first ever annual review today.

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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You can join, contribute to and keep up with Learning Disability England for £12 a year.  

 

 

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.

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.