Crocodile tears and the ‘do nothing’ advice

Early morning, a column by Clare Gerada appeared in my twitter timeline. Gerada is an ex-chair of the Royal College of GPs so no fly by night. She campaigns (as part of a heavily, heavily NHS England funded gig ‘Practitioner Health’) about doctors’ mental health. This week there has been coverage of doctor suicides with some loose reporting of figures (there were 81 suicides not 430*). Gerada is trying to extend the Practitioner Health service beyond London.

I dunno. You can sit on either side of the fence, or on it. As is too often the case with the NHS following the dosh is an instructive exercise.

‘Sensible advice’ say some replies to Gerada’s column. ‘Best advice I’ve ever seen…’

The heading kind of made my eyes water. Those blooming tears. Still.

Do nothing… immediately.’ I can only now imagine this ‘luxury’ over the past five years. There is no space to ‘Do nothing… immediately‘ for families. We face years of unrelenting, unremitting fighting, policing, and uncovering. Pretty much every NHS related scandal is the outcome of persistent, committed and astonishing actions by families and their allies. Activity that allows no downtime in a grief drenched space.

‘Do nothing… immediately’

‘When a complaint lands on your desk…’ says Gerada. Deliberately disembodying the ‘complaint’ from the person making it. And the space in which it materialises.

The person (human) who probably never dreamed of making a ‘complaint’ to the NHS. I mean why would you? Why would any of us**? It’s a national institution. A treasure. Free healthcare at the point of delivery and all that…

How often do we actually make a complaint about stuff? About trains, airlines, education, retail outlets, telecoms, restaurants? Why would any of us want to make an official complaint against the NHS? What would make us feel driven do this? Complaints in any setting are important for improving service. Complaints in the NHS are crucial because they involve lives.

For Gerada the complaint isn’t delivered or received. It ‘lands’ on the workspace. Disconnected from action and intent. Allowing her to (brutally) focus solely on the practitioner.

‘Do nothing’, she advises. ‘If you can, take the rest of the day off.’ Take the rest of the day off…

‘Do not rant and rave…’ I still can’t understand why the assumed position of a medic would be to rant and ‘rave’ about a complaint. Getting a 3/5 mark on student evaluations is enough to cause some right old soul searching/scrutiny of our learning and teaching practice at work (even after 10 years). The idea we would leap straight to defence of our practice – to ranting and raving – is baffling.

‘Wait for the first waves of shock to pass…’ Still no consideration of the person or family who made the complaint. Of what they may be experiencing; their pain, distress, grief. The piece descends into a google translate type extract. Clunky. Missing meaning. Swerving on substance. With the odd hand grenade planted between platitudes: ‘At the earliest opportunity contact your medical defence organisation (even if the complaint is trivial)’.

In short, Gerada’s advice seems to be ignore the substance of the complaint, buggar off for the rest of day and get your legal defence ducks in line. She ends with ‘don’t suffer in silence and don’t take it personally’.

Wow. Just extraordinary ‘advice’.

She has previous on complaining.

And clearly remains obdurate on the subject. A road traffic accident… From last night.

What I don’t understand is why there remains little critical (in a good way) and open questioning of what is clearly shite and offensive advice by medics. It’s as if once harm has happened or been done, the drawbridge is raised and the profession becomes a pack.

Where is the thought, the reflection. Humility. Or challenge?

*This is in no way to dismiss, belittle or otherwise every health professional who has died.

** For the sake of transparency, I made a complaint to Southern Health NHS Trust when LB was in the unit. I said they didn’t listen to my concerns about his care. About 5 days before he drowned in the bath I was told it was not upheld.

Sharks on the rooftops

I went for a wander round Headington late afternoon earlier. In part to practice taking photos with my new camera and because I remain so blooming upset/agitated by the description of LB in the NMC hearing ‘determination of (un)facts’. How dare a fucking ‘panel’ of a nurse and two lay people who never met LB and have done nothing to try to understand anything about him be so callously disrespectful of who he was.

No doubt they will argue their determination is based on evidence but evidence is not statements like so and so ‘seems to suggest that…’

Distressing, unnecessary and cruel.

In the late afternoon sun I wandered past the Co-op where LB smashed doing the shopping back in the day. Still makes me chuckle. On to Posh Fish, a go-to chippy for 20 years though our visits have dropped to rarely as the kids have grown older. My mum and dad took Rosie, Tom and LB there for some nosh on the day of my viva at Warwick in 2006. Rich and I pitched up later to have a celebratory beer with them. Such a joyful day. Posh Fish rocked. Reach for the stars stuff it seemed at the time.

Sharks on the rooftops.

Then round to the other Headington shark. The one we used to go and look at when the kids were tots. Rosie was convinced for years it had been a fish and chip shop. I think maybe as a way of trying to make sense of an enormous shark apparently falling head first from the sky through the roof of a terraced house.

At the end of the shark road is the funeral home LB was in before his funeral. Well in and out of because of the balls up over his post mortem. Behind the side window is the ‘viewing room’ or chapel of rest. It’s just a room really but a room completely and devastatingly not like any other room.

[For geography nerds, the John Radcliffe Hospital is up the road there on the left.]

As I waited to cross the road directly opposite a coach went passed blocking my view. Oh my…

Angel Executive Travel. No.fucking.way.

This coach passed me on the day of LB’s funeral. Walking in distress and agitation in the park across the road (the same road). A different type/flavour/density? of distress and agitation.

I didn’t know whether to laugh, cry or punch the air.

I’m taking air punching.

At the end of a week in which professional sharks (not our local fun and quirky ones) have once again been circling for blood and behaving like fucking spunktrumpetweeblewarblers we’re not going to let LB’s memory be sullied in a crass, ill-informed and deeply biased report.

On Friday we’re back to London to fight the fucking fight that never, ever seems to end; to try to establish the humanity of our fun, quirky and beautiful children.

A death anniversary distraction. In two Acts.

LB’s five year ‘death anniversary’ is slowly, oh so slowly, approaching. A now familiar tangle of dread, sadness, unexpected tears, and more sadness. With a sort of ‘five year’ incomprehensible label slapped on it. I’ve been snappy, irritable, weary, overwhelmed by the enormity of it all. Sad. So fucking sad. Tomorrow is five years to the day I last saw LB alive. I’ve been obsessively counting back for the last couple of weeks. Dipping into my blog to see the slow denouement captured in what was ‘real’ time at the time.

I’ve learned that death anniversary distractions are important, and almost impossible to identify in advance.

Act 1

On Saturday I had a meeting with the INQUEST Family Reference Group to talk about a new photography project they’re plotting. It was held in Lauderdale House, Highgate. I caught the Oxford Tube to London in the morning, reflecting on past journeys with LB (all hilarious). I functionally picked and plotted my way across London using a combination of Google Maps and my Oyster card. Hot, hot and hotter. Notting Hill to Tottenham Court. Out of the Northern Line steam bake to brilliant sunshine at Archway. The 20 summat bus up Highgate Hill.

I got off in one of those ‘drops of paradise’ spaces that exist in pockets around London. A beautiful, old white house on the edge of Waterlow Park. Parkland, lakes, a wild meadow, dips, low hills and easy like summer sunshine activity. BBQs, blankets, bunting and laughter.

The meeting was productive, moving and over (for me) by early afternoon. Walking back to the station I suddenly wondered how close Highgate Cemetery was. A cheeky Google in the shade showed it was a mile diagonally across the park.

Highgate Cemetery. Two sites divided by a road. The West side was guided tour only. The tour was about to start.

The next 70 mins was an exemplar in grief anniversary distraction. Stunning, idiosyncratic, unexpected, mystical, and enormous. Deliciously cool, green and death related. I devoured names, dates and stories on gravestones and learned various death nuggets.

A broken pillar signifies a death cut short.

After the tour I wandered round the more tamed east side of the cemetery, clocked Marx’s tomb and others before heading home. Distraction job unexpectedly and brilliantly sorted.

Act II

We’ve got a velux window above the sink in the kitchen which has hosted a false black widow spider (FBWS) for weeks, maybe months, now. High up in the corner. Balanced with kick ass authority in a tangled, sort of mussy looking cotton wool web set up. We’ve discussed this spider with vague concern (me and Tom) while it’s grown chunkier.

I’m not a close up spider fan. I regularly peer up to make sure it’s showing no dropping down signs when I’m at the sink.

This afternoon a small party of flies and one if those look-alikey wasp things were mashing it up in the window space. At one point the wasp flew directly into FBWS corner.

‘Christ’, I thought grimly, ‘game over’. After a determined shake with some sass, it pinged free and bounced to the other side of the window.

I got the mop handle. This wasp deserved to live. Within seconds, I’d opened the window and it flew free. I went back to the kitchen table to chop some lettuce and felt the lightest tickle my neck. Yelp (yep), flick and leg it to the living room to tell Rich. Let’s just say he was underwhelmed.

I returned to the chopping board.

Movement on the tea towel on the bench below caught my eye. The spectacular, shiny, brilliantly skull decorated FBWS.

I did a mangled scream/shout/’oh my fucking god’ holler combo [I know]. Rich immediately captured the spider in a plastic cup and took it outside.

“Are you sure you got it?!” I asked, “I mean how the hell did it get across the kitchen like that? Did it… [shudder] jump?”

“You do know it’s nearly the end of one of the most exciting World Cup matches so far..?” he replied.

Life.

Death.

Distraction.

Five years and four months

Time.

Approaching five years since LB died has been weighing heavily. Five years. Half a decade. Mostly taken up with a brutal fight for accountability. Leaving us barely standing at times. Irreparable, inexcusable damage and destruction.

Five years.

Five years since I last hung out with, touched, talked with, loved with my eyes as well as my heart, my beautiful, extraordinary boy.

Five years.

The Williams Review

Today the rapid policy review ‘Gross Negligence Manslaughter in Healthcare’ report by Norman Williams was published. Four months in the making. A ‘rapid policy’ route. Four months…

Four months.

Four months of hearing from ‘many individuals and organisations. Bereaved families, healthcare professionals and their representative bodies, regulators, lawyers, investigatory and prosecutorial authorities, as well as members of the public…’

A review conducted, written, signed, stamped and published within four months.

Four months.

Shorter than the length of time NHS England sat on the leder review before sneakily publishing it in May.

Four months.

And five years.

#bastards

Dancing around death…

Ben Morris, the STATT unit manager, was suspended for 12 months today at the beginning of the Nursing and Midwifery Council hearings. He admitted 17 charges and ‘accepted his fitness to practise as a nurse is impaired because of his past, serious misconduct’. I read the consensual panel determination (a 43 page document capturing the charges, admission of guilt and the now typically late to the table remorse) over the weekend.

More pieces added to the map of we’ll never ever know.

Morris offered no explanation as to why he didn’t do the things he should have done (other than ‘working’ beyond his skill set). He didn’t blame anyone.

The shadowy figures of clinical commissioners and Oxfordshire County Council dance around the edges of these documents. Again.

Quality reviews screaming ‘ACT NOW’.

Ignored.

Why the fuck didn’t you do something?

No engagement. No interest. No care.

Hollow, brutal and public erasure of humanity.

#Leder review

 

 

Entering the labyrinth; a leder tale

The leder report was published on Friday 4 May. Three years of the Bristol University project reviewing the premature deaths of learning disabled people.

[Blog commentary by Mark Neary, Mark Brown, two posts from Chris Hatton here and here. Opinion piece by Ian Birrell here. All worth reading (in any order).]

Key issues

1. The findings of the report (shameful).
2. The underfunding of the work (shameful).
3. The attempts to bury the report (shameful).

Here I reflect on the opaque and confusing labyrinth seemingly designed to make the premature deaths of learning disabled people disappear.

A song with no title 

No one knows what leder stands for. Including ‘go to’ Google.

leder

A (non) communication strategy

The report was finished in November 2017 and has been sitting in the grimy halls of NHS England while a communication strategy was devised. This took the shape of ‘timing, timing, timing and no communication’:

  • Bank holiday weekend and local election results.
  • No advance copies for the media.
  • No comment from NHS England or the Bristol team.

There would be no comment.

Holed up in the Holiday Inn Salford opposite the BBC studios on Thursday night there was no advance copy of the report despite repeated requests and cajoling from journalists.

I was sent a sneaky few bullet point findings to digest.

I went to the bar.

The coverage

8am-ish after fear-interrupted sleep still no public sign of the review.

Waiting outside the BBC Breakfast studio on the second or third floor, a 4-6 minute dash to the booth in the foyer for patching into the Radio 4 Today show was explained to me. Sofa to booth. Live coverage. Of premature death.

No report still.

The order was reversed. I beetled downstairs with Jayne McCubbins (who was instrumental in the coverage that unfolded). We worked out how to turn off my new phone, donned massive headphones and waited. In the small, darkened space. To speak to the Today programme.

The presenter wasn’t versed in the implications of the report. Jayne provided the headlines then I was asked about LB.

Nope. Don’t coat this scandalous evidence with a gratuitous dose of pity porn.

No.

It was a fairly tense interview. At the end a response from NHS England was read out. [Their only response to date.]

We welcome, they say, this interim report, the first of its kind in the world. These early lessons will feed into hospital and community services work including early detection of symptoms of sepsis and pneumonia prevention, constipation and epilepsy where there is significant progress. They go on to say another £1.4m more will be spent this year so that those responsible locally as well as the University of Bristol and NHS HQ can ramp up the speed and number of reviews.

There’s not much to say about this statement other than the absence of the gravitas, sensitivity, concern and commitment to action you would expect. A report that should have generated immediate and unqualified responses by the government, NHS England and others.

Ramping up the speed.

Ten minutes later I was on the red sofa with Naga and Charlie. They asked relevant, important questions.

“Who is listening?”

No one.

The label of learning disability is now the equivalent of being diagnosed with a life limiting illness. This report adds further evidence to a bloated evidence base.

The coverage that morning is generating the saddest (powerful) tweets from various families. George Julian is pulling them together here in a twitter moment.

Including Danny and Joey.

An urgent question and a bolt for the door

Today Barbara Keeley MP raised an urgent question about the report. Jeremy Hunt legged it as soon as she stood up to talk. An extraordinary moment. All that talk on December 15 2015 when the Mazars review was leaked to the BBC. Pomp and promises. The world leading champion of patient safety…

He left. He walked out. He couldn’t spare 20-30 minutes of his time to engage. His myopic and dangerous lens never more visible in this action.

The hapless and hopeless Caroline Dinenage was left to fend questions. The Minister of (no) Care. Parroting ill-informed and vacuous responses. It was a hard watch. The full transcript is here.

Questions were asked about the content of the report and the publication timing.

The Bristol team finally burst into action. Tweeting to say no, this ain’t true.

Too little too late

I’ve puzzled over the role of the Bristol team here. As a researcher myself. We’ve long known about the challenges the team have faced with a paucity of funding and unrealistic expectations. They have, in some ways, done the best they could do with that level of challenge. The problem I have is with their lack of challenge to the challenge.

Only 8% of the 1300 deaths referred to the team have been reviewed so far.

1300 people. With families, lives, history and stories. People. With mums, dads, sisters, brothers, grandparents, cousins, aunties, uncles, friends, pets. People. Some with no family. Still people. People.

Erased.

Rubbed out.

By an underfunded project that couldn’t cope with the number of people.
By the Bristol team who stood by.
By the actions of NHS England who remain silent (and so much worse).
By the action of Dinenage who was prepared to stand up and defend the indefensible.
By the silence of Jeremy Hunt.

Violence, silence and erasure.

 

Housecoats, aprons and mucky labour

Captivated by the women of Galicia along the last section of #CaminoLB.

“Can I take your photo?” I asked pointing at my camera. A few said no. Others stood tall. Looking me in the eye with quiet confidence. There was no artifice or prevarication.

Incredible, beautiful faces.

Lines. Life carvings. Contours of determination, humour, dignity. Resilience. Well earned, authentic resilience.

Glimpses of triumph and more. So many stories.

Housecoats, aprons and mucky labour.

Back to work tomorrow.  It’s been a long five years.


Light and the fatberg ingredients

L1031904-2

Crumbs. I’m feeling brighter. I’d anticipated a plummet to rock bottom land in the lead up to the Health and Safety Executive (HSE) sentencing hearing next Monday and Tuesday. A month after the MPTS sanction decision for Valerie Murphy. Two years after LB’s two week inquest. Five years to the day we took him to the STATT unit that cold, dark Tuesday evening on March 19 2013 [howl].

Other than the odd trip to London or Oxford I’ve been hanging out in the Justice shed for weeks. Crocheting.

A recognisable blanket of brightly coloured granny squares has emerged (will add a picture in the morning when it’s daylight). Griefcast has become my (late to the party) go to soundtrack. The (sometimes) humorous reflections of death and grief by comedians has been a gentle and soothing backdrop to the wool action.

I feel brighter.

Tom and I did a news interview this morning in advance of next weeks hearing. In our kitchen. The setting for numerous recordings over the last five years.

Doors have since fallen off cupboards and and half arsed drawer fronts carefully propped up. In preparation for the visit I did a bit of cleaning this morning.

“Mum! It smells really funny down here!” shouted Tom while I was upstairs getting out of my crochet uniform of grey tracky bottoms and a worn out old woolly red jumper.

“Ah I chucked a load of bleach down the sink. It might be that!” I replied. Visions of some right old ripe and until now undisturbed fatberg ingredients fighting back in the u-bend.

We ended up talking about five years of campaigning. Five years. Five of Tom’s seven teenage years. Pretty much the first five of Rosie, Will and Owen’s adult years. Half a decade. Half a decade of repeatedly poring over the hideous and distressing details surrounding LB’s death. Over and over and over again.

Of being blamed and vilified. Of persistent fat berg ingredients.

The interview was unexpectedly positive. There are no more nasties to come. No more bundle pages to turn over and ‘go to’.  No more oaths to swear. No more vicious counsels to face. We’re part of the audience for the hearing next week. And Sloven have pleaded guilty.

Tom made a comment at the end of the interview about the style of the campaign; the humour, creativity and fun. He was spot on.We’ve collectively written, blogged, spoken, tweeted, live-tweeted, presented, met, challenged, shouted, scrutinised, counted, drawn, produced, filmed, sung, shared, kayaked, run, walked, danced, travelled, stitched, photographed, baked, drunk, laughed, cried, wept, hugged, raged and laughed more.

Whatever happens next week we’ve done LB and all the other dudes proud.

Light.

L1032421

L1032418

 

 

 

Some right things and a humility glug

Hoping to head off ‘witch hunt’ commentators and silent but disgruntled medics I sense may be lurking. Valerie Murphy has had numerous opportunities to ‘do the right thing’ over the last four and a half years. Right things and responsibilities. Below is a list of suggested right things based on my observations and experience of the GMC process.

Right things

(a) The early days

  • Say sorry. Your actions may or may not have contributed to what happened but just say sorry. Someone has died. [As a bit of an aside, a key thread running through this interminable process has been the importance of demonstrating remorse and insight. This can only start with with a genuine apology.]
  • Welcome a full and frank investigation into what happened and contribute to it openly and honestly.
  • Scrutinise your professional practice and involve a range of colleagues and others to help think through and understand what happened and why, and how it might be avoided in the future.

(b) Across the investigatory process

  • Avoid trying to cast blame elsewhere.
  • Be transparent, open and honest. Don’t, for example, ‘save’ information like an earlier death to share in a particular setting at a particular time.
  • You have a set of duties to adhere to. Try not to get sucked into shite practices that may be demonstrated by the Trust executive board or others.

(c) Interactions with your counsel

  • Instruct your barrister to treat everyone involved with respect and sensitivity.
  • Take ownership of your position and role in the investigatory process. If, for example, your barrister begins to ask unnecessary or distressing questions of a witness, tap her on the arm and close it down.
  • If something in the evidence upsets you, try and suck it up. The process should enable embellishments and more to be exposed. You don’t need to have your upset recorded.

During the tribunal

  • If particular issues or concerns with your professional practice are highlighted, work out appropriate ways to demonstrate you’ve improved them. Ask for help if you are unsure how to approach this.
  • Try, as much as is humanly possible, to turn up to every day of the hearing.
  • Think carefully about who you ask to be a character witness and make sure they are properly briefed about the importance of this and what is expected of them.

A final reflection is the professional arrogance medics can exhibit. I witnessed this on twitter this week when a discussion effectively ended with non-NHS commentators being dismissed as ‘armchair critics who wouldn’t last 5 minutes in the NHS’. I don’t know at what stage in the education or experience of being a medic this arrogance kicks in (I ain’t a medic). But I do wonder if a glug or two of humility is a good tonic every so often.

 

The tribunal, two book launches and a dream

The five days between the General Medical Council tribunal weekend hearings have gone past quickly really. Filled with thoughts about a family operation (Tuesday/successful), new baby (due last Friday/born at 3am this morning… welcome to the world, Rory Joshua, you cheeky little cutesy), unexpected office move deliberations, the My Life My Choice AGM where the Queen’s Award was celebrated, and more.

Two book launches

Several people at work told me they’d been reading my book. Blimey. My book. I’d almost forgotten about it among the latest GMC hearing knocks, despite two extraordinary book launches last week. The Book Launch Extravaganza organised by Katherine Runswick Cole at Manchester Met on Oct 31. Six brilliant books, including ‘Don’t Cramp My Style’ by Simon Cramp and Kirsty Liddiard’s The Intimate Lives of Disabled People, a brilliant set of talks, discussion and nosh after.

On Nov 2, Helena Kennedy hosted and chaired a launch at Doughty Street Chambers with an all women panel; Caoilfhionn Gallagher, Deb Coles (INQUEST CEO), Helena and me.

It was another wondrous evening not least because of the open, welcoming and relaxed approach by the Doughty Street team who treated it as the celebration it was (a point I’d kind of forgotten en route on the Oxford Tube), and the sense spoken. The audience included family, friends, #JusticeforLB campaigners, journalists, human rights, mental health experts and some twitter legends. Michael Edwards, Dawn Wiltshire, Pam Bebbington and Paul Scarrott attended from My Life My Choice. The highlight of the evening was when Michael E encouraged Deb when she stumbled over the word ‘incredulous’ and then commented “I don’t use long words myself”.

A dream

I dreamed about LB this morning. Only the second time since he died. In the first dream, from what I can remember, I knew he was dead. It was more of an interactional/touching base/trying to prevent me from descending into madness type thing. He was wearing an unlikely bright red jumper.

This time we passed each other in a white corridor which kind of felt like home. I asked him how he was was. In his own style he said not brilliant. He wished he had a job. We sat down on a couple of chairs. Sitting close, leaning in together. Like we used to. I held his hand. There was that quiet intensity and comfort I’d forgotten about.

It took me a few minutes to remember he wasn’t alive when I woke up.

The GMC tribunal

The GMC tribunal continued today with the panel deliberating in private. They will be returning a decision on whether the charges against Valerie Murphy (LB’s responsible clinician) equal misconduct and, if yes, whether this misconduct amounts to a current impairment in her fitness to practice after 2pm tomorrow. Depending on the decision, two further dates may be arranged to decide on a sanction.

I hope she finds it in herself to turn up tomorrow. She was absent last weekend for undisclosed health reasons. I hope I’d turn up to face the music in such circumstances. As much for the family as for my own sense of self worth and integrity. Even if I felt utter shite. As I do.