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.

 

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.

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.

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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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.

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.