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.

 

 

A phone call from the NMC

“Hello Dr Ryan,

I just wanted to update you with where we are at with the tribunals. Since we last spoke we’ve held case conferences with the HSE and GMC and established a good working relationship.

One other thing that’s come to light is that back in November 2016 we sent out your personal details to all six registrants [nurses] and their counsel. We’ve asked them to send the hard disks with the details on it and to destroy any copies they may have made.”

No words.

Update:


The Mystery of Loring Hall and the CQC

Ok. This is hugely important. And devastating. I’m going to go through it in some detail because it is so fucking important. And devastating.

Here’s the rub. In November 2015, the CQC inspect Loring Hall, a care home for up to 16 learning disabled adults, run by Oakfields Care. ‘Good’, ‘good’, ‘good’, ‘good’ and ‘good’ on all five domains inspected. A clean bill of health.

The CQC then received concerns around the management of risk to people living at Loring Hall.

On April 28 2016 they reinspect the home focusing on how safe and effective the service was. This produced a remarkably different picture to the November inspection. The re-inspection was conducted by an inspector and specialist advisor with epilepsy expertise. The key findings:

The inspection report reads eerily like the September 2013 inspection report of the unit LB died in. Medicines not stored properly, untrained staff and inadequate risk assessments…

Despite the list of failings identified during this new inspection (including a striking lack of training)…

… the CQC decided not issue any enforcement action:

A last bit of detail on the process of the April 2016 inspection:

On April 13 2016 Elric Eiffert drowned in the bath in Loring Hall. He was 34 and diagnosed with epilepsy and autism.

His family were told about his death on April 30 2016.

Just a few scrambled questions and comments (I can’t make much sense of any of this) largely for the CQC:elric 7

Our son drowned in a bath in a craphole unit, six years after another patient drowned in the same bath.

The first patient’s death was covered up until October 2015 when it was used as a nasty little ‘weapon’ at LB’s inquest.

Nearly three years after LB’s death (and after a Prevention of Future Deaths report was issued by the Coroner), Elric Eiffert  drowned in a bath in a craphole ‘care’ home that five months earlier had received a ‘good’ CQC rating.

No one should drown in a hospital or care home bath in the 21st century. Or die unsupervised of a seizure in a ‘care’ setting. LB, Elric, Edward Hartley, Danny Tozer and countless other people, would all be alive if they had received appropriate care.

This is beginning to look a tiny bit like state supported eugenics. And no one who should appears to give a fucking shit. Still.

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:

IMG_2704

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.

 

A missing ‘apology’ in five parts

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Part I.

Michael Buchanan (who I suspect bereaved families across the country are developing serious love for) continues to fight the good fight of uncovering and shedding light on brutal NHS practices. He did a piece about the decision of the Health and Safety Executive (HSE) to prosecute Sloven for BBC News on Tuesday.

At one point, Huw Edwards, introducing the story, said:

“The Trust earlier apologised to the family…”

I nearly dropped my glass of cheeky and chilled vino.

“Eh? Did you hear from Sloven today, Rich?”
“No.”
“Neither did I. What apology?

The next morning, a local journalist rang and mentioned the apology.

We ain’t received an apology, mate.

I looked on the Sloven website. Maybe they’d issued a statement. [Putting an apology in a statement is not the way to apologise to a family, mind. I was curious about where this ‘apology’ was].

Nothing.

I continued to hear about ‘the apology’ as the day wore on. With no sign of it. Then bingo. This, on twitter:

carding

Ah. The apology was part of a statement the Trust were sending to journalists. A fake apology extraordinaire.

Part II.

In the same way that the Trust response to LB’s death was to write and circulate a briefing document about my blog to protect their reputation, their response (and this needs to be read within the context that three board chairs, a CEO and a complete set of non-executive directors have now been replaced)  to the HSE decision was to tell the British public, via the press, that they have, once again, offered their ‘unreserved apologies’ to us.

Now Julie Dawes, and your merry band of (shit and/or remaining) executives, here’s the rub:  this is no apology. It is nothing resembling an apology. It is so much worse.

What you have done is:

  • compound the barbaric treatment you have relentlessly dished out to us (and many other families).
  • Make visible the insincere, formulaic and performative ingredients of an NHS ‘apology’.
  • demonstrate you have learned nothing despite saying you have.
  • treat us with further contempt and disrespect I didn’t think possible.
  • show us you remain incapable, either wilfully or otherwise, of understanding basic humanity and decency.

Part III.

The statement is pure spin. A closer look at the wording:

carding2

The HSE has “informed the Trust of its intention to prosecute in relation…” [Prosecute who?] “Connor’s death whilst in our care…” [It could have happened to anyone, we just happened to be holding the parcel when the music stopped.] “Could have been prevented…” [Introducing uncertainty into the findings of the independent investigation and the inquest.] “We would like to…” [But we ain’t going to.] “Once again…” [We have apologised to this vexatious mother relentlessly.] “Offer our unreserved apologies…” [A prize for us to take with grateful hands.]  “To his family.” [Family for PR purposes, ‘the Mother’ for every strategic opportunity to stick the boot in.] “Continues to do everything it can…” [Apart from actually say sorry].

Part IV.

You didn’t get in touch with us to say sorry. You got in touch with the press.

Minutes after finding the ‘apology’ on twitter, I received an email from your administrator. On behalf of you and the Board Chair, Alan Yates, about meeting up with the group of families you have treated like utter crap.

dawes

You can email me about a meeting (to benefit you) but you can’t say sorry.

You didn’t get in touch with us to say sorry. You got in touch with the press.

I find this unforgivable.

Part V.

Rich and I have felt pretty low since the HSE news. People have been saying it’s remarkable that the campaign has achieved so much. It is. Bryan, from My Life My Choice, earlier reminded me of the time I sat in his office a year or so ago, dejectedly saying we didn’t have a craphole chance of achieving our aims… particularly around making sure Sloven didn’t profit from the sale of the Slade House site and a prosecution against the Trust.

The trouble is, of course, LB remains dead; our beautiful son, brother, grandson, nephew, cousin and friend, is forever absent and, within a shifting family landscape, newer family members will never meet their quirky uncle LB, brother in law, second cousin or potential godfather. We know this. Any bereaved family knows this.

What your latest ‘unreserved’ non-apology beyond shiteness this week has shown, is that you have zip all understanding of this, and that you couldn’t give a flying fuck. You have been beaten into a corner by a remarkable, and unprecedented, collective brilliance, and you’ve learned nothing.

Still.

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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.

Branch, burial or crematorium…

“Darling, I’m sorry but the undertaker wants to know if we want a burial or the crematorium…”

“I’m just filling in a HSIB Patient Safety Awareness form.”

“A what? What’s HSIB?”

“The Health Safety Investigation Branch… Some government thing.”

“We need to make  a decision. Apparently  the cemeteries are pretty full around here.”

“Sorry, I’m stuck on this question: Why do you think HSIB should investigate your incident?”

“What incident?”

“Jimmy’s death.”

“Christalmighty. He died for fucks sake.”

HSIB was launched this week. Led by Keith Conradi, an air safety expert and pilot, with over 40 years of experience. The new branch is allegedly independent despite being called a branch, based within NHS Improvement and funded by the Department of Health.

I’m sure Conradi is an ace guy. I’m sure he knows his air safety stuff. Patient deaths and bereaved families?  Not so sure. The ‘its’ and ”relatives of incidents’ on the HSIB website suggest not.

The gig is that HSIB will investigate 30 deaths a year using a Human Factors approach. There is a set of criteria for selecting these deaths; outcome impact, systemic risk and learning potential. Your daughter, father, brother, sister, mother has become a learning tool and the bigger the potential learning from their death, the more chance they have of making the cut.

If you understand the various hoops on the website and get through them, you eventually (after two pages with an identical ‘get started’ button)  reach a link to the Patient Safety Awareness Form. The potential gold ticket. This kicks off by asking:

When did the problem you want to share with us happen?
I kid you not. The problem... The incident. Relatives of the incident. Human Factors bods take the non-pursuit of blame to a level that doesn’t translate well into health care. Reducing death to ‘a problem’ will probably send most bereaved families who have got this far into further pieces. If they limp through to the final page of the form, they are expected to produce a coherent justification as to why the death of their loved one reaches the criteria for investigation.
I don’t know. There is something different about approaches to safety in the airline industry and safety in the NHS. Dragging Human Factors from the former to the latter (without some reflection, understanding, empathy and commitment to adapt the process to the very different context) clearly necessitates an erasure of the human and focus on nothing but systems. But health care is necessarily messy, interactive and drenched in human. It involves patients who die in a many different ways, at different times. In the airline industry I assume (please tell me if I’m wrong) that a plane crash generates an instant grouping of deceased passengers, and their relatives, who have some shared experience of this catastrophic event or happening.
On twitter tonight I was introduced to the concept of “second harm”. This is:
Blimey. Second harm. This is so important (and makes me want to scrowl given the battering we, and so many other families, have experienced because our beyond loved children, parents, sisters or brothers died in the ‘care’ of the NHS).
The information on the new HSIB site is offensively phrased, not accessible and the process of ‘referring incidents’ is exclusionary; it assumes particular levels of understanding, articulation and engagement. And, as importantly, ignores grief and humanity.
It has, in short, considerable potential generate more second harm. Classy stuff.
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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 tale of two releases

A Bermudian journalist, the only independent journalist on the island, popped up on twitter this week, tracking down details of the recent announcement that St Andrews Care (who were the subject of the documentary, Under Lock and Key) are going to ship patients from Bermuda to their ‘care’. He published this story.

Here is the original news release published by St Andrew’s. Tiny type, sorry.

St A bermuda news

And the revised one after the press started to get interested.

St A bermuda news 2

To save you squinting too hard at them both, the main differences are:

St Andrew’s has achieved a ‘new first’, not by winning ‘an [sic] contract to provide care to forensic patients’, as originally stated, but by ‘by being selected as a preferred provider to support the Bermuda Health Hospitals board in providing care…

Bit of a difference, raising questions about what is actually going on between St Andrews and the Bermuda Health Hospitals Board. And whether there is there any scrutiny of these negotiations.

The sentence about Bermuda being a small island with limited resources and people with mental illness being held in the island prison system has been removed.

Mmm. Probably best not bite the hand that feeds you. The original statement suggests that, possibly, there may not have been much consideration of the tender process, context and history on the part of St Andrew’s.

Instead of the the ‘contract being awarded at the end of February’, the story has changed to ‘contract negotiations are now being started’.  Puzzling. How these dance steps are being played out between the Bermudian system and St Andrew’s, outside of any apparent transparency,  engagement or public consultation is chilling.

The second press release drops any mention of three patients ‘set to travel to Northampton as part of St Andrew’s Men’s mental health pathway, with up to nine patients due to join St Andrew’s in the coming months’. I’m relieved this is currently disappeared. The way it was written sounded like the first three patients and the subsequent 9, were coming to join some sort of corporate team building exercise. Not wrenched thousands of miles from homes and families they will, more than likely, never see again. I’m sure it won’t stop this happening but any reflection on and consideration of what is being plotted can only be a good thing.

Finally, the statement from the Executive Director of Nursing and Quality has been revised. The opening sentence about ‘bringing the charity income from new sources’ is deleted. 

Income from new sources… Before the health and well being of these patients. Extraordinary. Since when did a massive charity need new income? Given the gargantuan salaries of the exec board and this latest money spinner, the Charity Commission should be having a bit of a snifty around this bunch. I can smell em from here.

A cull and a shedload of ‘shoulds’

So, the Sloven non-executive directors are no more. The interim Board Chair, Alan Yates, published the news earlier. He had the decency to let us know in advance which we appreciate. He’s also clearly got some sense getting shot of them. Though really you couldn’t get much more of a “fuck me, this bunch of muppets are utterly clueless” situ. Just look at the very potted timeline, the BBC pulled together:

The failings drag back to 2011 when the Trust gained Foundation Trust status, and have been well documented since then. A shedload of public dosh has also been spent on repeatedly reviewing the Trust governance. Simply shameful. Here’s hoping some of the remaining execs follow suit sharpish.

In other news, the National Quality Board guidance, an outcome of the CQC Deaths Review, was published yesterday. More guidance. Drenched in typical ‘guidance’ statements like; To ensure objectivity, case record reviews should wherever possible be conducted by clinicians other than those directly involved in the care of the deceased. 

I should start walking more again and give up booze and chocolate. We should keep the house cleaner. Of course case record reviews shouldn’t include the involved clinician. Seriously. Is this how far we’ve come?

New principles for engaging with bereaved families are included in the review, handily provided in a box on p15. Eight bullet points and 7 ‘shoulds‘. I remain so blinking relieved and delighted that #JusticeforLB has been an explosion of colour, fun, joy, beauty and brilliance. A tonic to offset the utter banality and mediocrity of official responses to scandalous practices… 

As part of the CQC Deaths Review spillage, there’s a swanky ‘Learning from Deaths Day’ arranged next week. In a move that both exemplifies a) the complete lack of understanding (still) of what needs to change by those who should know so much better, and b) the disconnect that exists between the different silos of NHS England, CQC, NHS Improvement and the like, this day was originally closed to families. I know. (Almost) cue the old, eye leaking emoji…

Eh? What was that Jezza? Sorry, stumbling on bullet point One right now. Here’s a reminder in case you’ve forgotten (or not been told): ‘Bereaved families and carers should be treated as equal partners following a bereavement..’ Oh and bullet 8: ‘Bereaved families and carers who have experienced the investigation process should be supported to work in partnership with Trusts‘…” 

You couldn’t make it up really. Just words. Put together in a report like shape. Same old words, same old order. Like browning blossom falling onto the damp ground below. Soon to disappear and be forgotten about until the following spring when new versions of the same appear.

With some agitation by various people, including George Julian and Neil Churchill of NHS England, families were eventually allowed to attend this day which is organised as a typical NHS exercise in heartsink pomp and ceremony. Swerving the opportunity for a humane, passionate, critical, efficient, collective and effective response to a scandal that obviously demands alternative and innovative responses, the same old turgid suspects are lined up to talk the same old, same old talk. Durkin, Richards, Mackey, Hunt and more Durkin. The 7.5 hour gig includes 10 minutes of a family member, an hour of scheduled discussion and 20 mins of Q&A.

 

We could probably write the script of the day now and save £££s. Not only in the laying on of the event but the time taken out of attendees’ everyday lives. I feel so sad that the brilliant and groundbreaking work of the Mazars team is being dragged down into this well trodden, hierarchical, tedious and mediocre NHS furrow. There was a moment, back at the end of 2015, early 2016, when actual change seemed possible.

Instead, it’s business as usual and a shedload more shoulds.

Postscript: Had a timely reminder via Twitter as I pressed publish that we have held the Sloven board to account (a CEO, 3 Board Chairs and 5 NEDs so far.) Yep. We bloody well did. Cracking work #JusticeforLB and continued drops of brilliance.