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.

 

 

Death, dosh and what the CQC knew

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An update to this post.

The CQC knew.

The ‘incident’ referred to here involves a man diagnosed with autism and epilepsy who drowned unsupervised in the bath in April 2016. He drowned. Alone, unsupervised in a bath.

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The CQC re-inspected the ‘home’, found various failings and referred to Elric Eiffert’s death as an ‘incident’. They found inadequate, or no, risk assessments around epilepsy:
cqc1

They took no formal action despite identifying risks to life that ended in death.

Instead asking the provider to:

send us a report that says what action they are going to take.

Send us a report…

The CQC knew.

At the same time they knew LB drowned in a hospital bath three years before. A death that should have been, by then, high profile enough to make any provider or NHS Trust pay close attention to bathing risks for [‘”vulnerable”‘] people diagnosed with epilepsy.

The CQC knew.

At the same time they were conducting an investigation into the way in which NHS Trusts respond to unexpected deaths. The irony. The wanton, careless, unjoining of dots that demand to be joined. That scream to be joined. How much money is wasted on this shite? While people continue to lead impoverished lives or worse?

The CQC knew.

Today #7daysofaction launched a campaign focusing on the profit made from the incarceration of learning disabled people in assessment and treatment units.

Dosh or death. Death and dosh.

The CQC knew someone had drowned in the bath when they inspected that place on April 28 2016.

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:

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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.

Slade House, dude selfies and the stars

An incredibly difficult week for some Oxfordshire families who are living the lack of appropriate support at a knife edge, or so much worse. I’m going to briefly highlight some good stuff that is happening in between the shite.

Oxford Health are taking over from Sloven (in July officially). They have picked up a right old mess but the new learning disability lead seems to be a rare senior NHS professional who has human written all over her. At an extraordinarily tense and distressing meeting this week she got it, she acted and she demonstrated she was a force for good. Fran reminded me this week it was 16 years ago we did a survey of the experiences of families in Oxfordshire. This flagged up the terrible stress families were under. She messaged me; “Looking back we were so naive in our basic hopes and expectations.” [Howl].

Families are working with people like Noelle Blackman, from Respond, and Oxford Health to do their best to create something that actually works for Oxfordshire dudes. What that will be isn’t clear though the expertise families are offering, together with a Trust who listens and seems willing to run with thinking outside of the typical, constraining and soul destroying, is deeply reassuring.

Finally, the Slade House site is not being trousered by Sloven. Our relief that this particular fight has been extinguished is beyond words. Nearly four years now, of campaigning at an intensity that cannot be indefinitely sustained, the prospect of chaining ourselves to the railings filled me with despair. This is a fucking ‘victory’ [not the right word but there are no right words] against injustice.

The deal (not quite signed yet) apparently is if Oxford Health sell the site within 5 years, Sloven get 50% of the dosh. This seems fair. Here’s to some creative planning around how this site can be used. I mean, just imagine if Oxfordshire became a pioneer in actually getting it right? From rock bottom to actually reaching for the stars…?

Four deaths, heads and a medical director

Between Oct 2010 and May 2011, four men died unexpectedly in St Andrews, Northampton. All patients in the Grafton Ward; a 20 bed, low secure ward. Bill, one of the four, featured in Under Lock and Key a few weeks ago. You’d imagine that four patients dying unexpectedly within a six month period in the same ward would send shockwaves around St Andrews and wider.

A copy of the investigation into these deaths landed in the Justice Shed yesterday evening. The terms of reference suggest that there was some switched on thinking around these patients’ human rights:

No. The Charity clearly didn’t understand the word ‘independent’ or their obligations arising under Article 2 of the European Convention of Human Rights. The investigation was led by the St Andrew’s Medical Director supported by the Head of Research and Development, Head of Physical Healthcare, Head of Health and Safety Investigations and Head of Pharmacy. About as far from independent as you can get.

Unsurprisingly, there was zero consideration of the four lives that ended, prematurely. The remaining terms of reference were:

The executive summary states:

It was the patients themselves what done it. With their long standing medical problems (clearly untouched by the long term leading specialist care provided by St Andrews at enormous cost to the NHS and other commissioners). One patient had lived there for 18 years. The day before he died, he refused to have his vital signs checked on two occasions.

Whatever way you cut it, this strikes me as a catastrophic fail on the part of St Andrews. “The UK’s leading charity providing specialist NHS care.”

They couldn’t even be bothered to proof read the final report.

Bedshaped…

Today was not a good day (Brexit aside), with a snippet of sunshine. A good mate and her family are enduring a family life that sits outside of the outer ring of anything remotely resembling acceptable. Their biggest fear right now is that their son will be admitted to St Andrews, in Northampton.

Yesterday, Channel 4 held a round table event to discuss the recent harrowing Dispatches documentary, Under Lock and Key, featuring St Andrews. Despite their glitzy website and talking the talk, St Andrews clearly falls short of providing the world class leading mental health services they claim to do. In fact, it’s hard to imagine what the £11,600 a week buys for some patients (other than the enamel removing senior executive salaries). This doesn’t stop NHS England and other commissioners flashing the cash regularly and consistently keeping people within their increasingly prison like walls.

Just this this week, the St Andrews adolescent provision received another ‘requires improvement’ CQC inspection report. Scrolling through the ‘view all reports’ link shows that their adolescent provision has required improvement since back in the day. Wow. Requiring improvement and charging more than it costs to live at Disney World*. This is, simply extraordinary.

The latest inspection report shows that, for your buck, you get a hefty wedge of seclusion and restraint. Of the four wards of 10 patients (adolescents) in each, the prone (prone) restraint figures per shite named ward (of an overall 905 recorded restraints in the past year) are; Acorn (52%), Bracken (33%), Fern (26%) and Brook (11%). This is, simply, scandalous.

Acorn, Bracken, Fern and Brook. Elsa, Mickey, Snow White and Mowgli …

The Channel 4 gig demonstrated the passion of the filmmakers and families featured in the film, and their commitment to ending the inhumane practices so many people are subjected. I’ve a lot of love for Alison Millar and team, who clearly forged relationships with families and did a shedload of research, and Channel 4 for hosting the event with gravitas, exemplary time keeping and breakfast. The lack of public outrage after the film was shown demonstrates the mountain they, along with so many of us, including the indefatigable Norman Lamb, are facing in trying to stop the careless brutality inflicted on so many people and families.

Sadly, this brutality doesn’t seem to penetrate the web of collective myopia too many senior people implicated cosy into. [There were no representatives from NSE England or the CQC.]

I was sitting next to Laura and Burt whose son, Bill, died from constipation in St Andrews. Laura, at one point, asked the Northants MP if he had ever stepped foot inside one of the new, enclosed quads that the swanky new build incorporates. A constrained daylight with no view. He didn’t answer.

I had a three hour meeting this morning, in a local hotel meeting room, providing supplementary evidence for the GMC. This is in advance of the tribunal of LB’s psychiatrist, scheduled for two weeks in August. Over four years after LB died. It was a deeply upsetting experience, despite the sensitivity of the solicitors collecting the evidence. How could it not be?

I’m listening to Keane tonight. The tears are back. Rich said earlier; “I feel we’ve gone back three years”. I dunno. I’m kind of out of ideas.

Where are we at?

  1. Certain people are dying premature and preventable deaths without scrutiny. Trying to gain any accountability involves unspeakable efforts by families.
  2. Commissioners/NHS England don’t know what good looks like and chuck dosh at crap. This generates ‘credibility’ and licence to provide further shite, leading to the growth of large scale institutions like St Andrews.
  3. There is little, or no, good local support to either prevent admittance or enable people to come out of units.
  4. Families endure unspeakable situations to avoid inpatient admittance.

It is a pile of shite. Just as it was four years ago when LB was admitted to the unit.

*Thanks to Tim Keilty for the number crunching here.