We set off early to meet David Nicholson, Chief Executive of NHS England, this morning. Timely. Two weeks before he stands down. It was foggy. The bus was full. An accident on the Westway creating a random/no knowledge/in the moment decision to jump off at Hillingdon and catch the tube to Great Portland Street.

This led to an unexpected coffee and potato bread space in a Brazilian cafe round the corner to NHS E Towers. An odd but good space. An unusual level of attention by the staff. A spontaneous touch of care and compassion… [And hey, if a couple of waitresses can do it…]

Jane Cummings joined the meeting to create a link between David Nicholson’s (Sir D? The Real David Nicholson?…) [I’m struggling here because a formal meeting is a different context to a curry ambush. I don’t want to be too inappropriately informal..] departure and the new Chief Executive.

Anyway. The meeting was one LB would have signed up to. Well on the NHS England side anyway. We talked, described, railed and ranted. We were listened to. David Nicholson was, as I expected given his twitter presence, a ‘cut through the crap’ kind of person. He held his hands publicly up over Mid Staffs last week. Whether this means anything to the patients and and families involved, I don’t know. I suspect for some (a lot, most? of them) it’s a case of too little, way too late. There is something about holding your hands up and admitting you got it wrong though.

The meeting. A lot packed into an hour. David Nicholson talked sense. Jane demonstrated understanding/empathy. At the end (after we’d shared our ‘draft’ view of what justice looks like for LB and other dudes, a draft version we’ll share here shortly) some ‘meeting Katrina Percy pressure’ crept in. We remain unconvinced as to why we’d want to do this but are happy to leave it that we’ll pipe up if this changes.

After another meeting, we wandered for a bit in the sunshine. And came across burgers and bananas in Covent Garden. A tasty alternative to another ‘Meeting….’ post title.

Thank you both for meeting with us. And for listening. We are delighted the dude is making a few waves.

We’re very aware, through various avenues, that Katrina Percy would like to meet with us. The subtext is that ‘this is a good thing’. It’s important for her to hear, first hand, our ‘story’. It’s clearly a ‘good thing’ for various bodies that we ‘move on’. (I’m trying to forget this statement from a Sloven employee on local television news because it makes my head howl, but there was also the email from a commissioner stating that they didn’t want to publicly finger Sloven for the blame.)

I think our ‘story’ is captured on these pages. If you don’t want to read back, try to imagine having your heart wrenched out, scorched to a crisp and crushed into dust in front of you…

Got that?

It don’t come within a sniff.

Our beautiful and remarkable dude was completely defenceless. Sloven, the local authority and the Clinical Commissioning Group had a duty of care to keep him safe. All three bodies really (effectively) took this duty, chucked it in the nearest skip and then, when the most devastating thing imaginable happened, tried to cover their own, or each others, backs.

If LB hadn’t died, the same beyond shite provision would be in place. No one (other than the constantly and effectively sidelined, excluded and silenced families) would be any the wiser.

Our son died.

Every single day I go to bed thinking about this. Every single day I wake to the pain of remembering it. A constant pain that varies from sheer agony to a dull ache of intense sadness (on a ‘good’ day).

Meeting the CEO of the most immediate piece of the jigsaw of shiteness isn’t high on our list of things to do. It doesn’t feature at all to be honest. And we wouldn’t be thinking about it (well Rich ain’t) other than this ‘should’ biz. Not least because the potential cost to us of having to listen to some fake, PR informed, pre-rehearsed bullshite is too awful to imagine. (Phil Gayle’s legendary interview with the CEO on local BBC radio is probably no longer available but a razor sharp summary is available here).

In the spirit of lack lustre engagement I tweeted earlier inviting thoughts about this.

The responses were a mixed bag of thoughtful and considered responses (click on ‘load more’ for further responses)

Thank you. We remain unconvinced. But remain open to a good ‘should’…

[An afterthought. I cried while writing this post. I don’t always].

Bit of a lengthy summary post capturing our interaction with Sloven Health up to the publication of the independent report into LB’s death, but maybe useful for new readers. I’ve included a set of tips in the text to try and inject a bit of positivity into what has been experienced as a form of torture for us. These tips are largely summarised in this post where I daydream about how it could have been (at pretty much no cost).

So, our beautiful dude died on July 4.

Sloven apparently sent in an investigation team immediately. No idea what they did given that the CQC found a complete fail when inspecting the unit eight weeks later. There was some communication between my mum and Sloven in the next few days. She was told the investigation would take around 4 weeks and the Divisional Director was willing to meet with us.

July 11 Acting CEO wrote us a condolence letter stating “I also wanted to offer any support you may feel you need during this time”. [Tip 1: Our child had just died. Completely unexpectedly. We had also just found out we would need legal representation to avoid a potential cover up. And that representation would cost us £1000s. This offer,”of any support” framed so carelessly, was received as a bit of a kick in the teeth. If you’re going to make such a statement maybe give it some legs; indicate what sort of support you are thinking of, based on an understanding of what has helped other families in the past.]

The Slovens sat back at this point and did fuck all. The internal investigation (this time with a 60 day time limit) started on Oct 1 after the police finished their investigation. Nothing was in place to do this investigation. [Tip 2:  Sort the investigation panel straightaway. It doesn’t interfere with the police work. And start preparatory work, like reading notes. It makes the whole process quicker and less distressing for the family.] 

A Serious Incident Panel was booked for Dec 6.*

Oct 10: We’re told we can have an advocate on the panel. Sloven present this as a gift to us but it turns out (personal communication) the CCG insisted we should have one.
Oct 17: It was confirmed our advocate (Fran) can attend all meetings and staff interviews.
Oct 21: Fran is sacked. Sloven are to choose a replacement advocate from an advocacy organisation of our choice. S/he will no longer be able to sit on the staff interviews, and will have to sign a confidentiality agreement.
Oct 25: Fran is reinstated. And she can sit in on the staff interviews. Sloven continue to  try and find an independent chair for the investigator. [Day 24/60] [Tip 3: Don’t mess about. Chopping and changing like this is not only hugely stressful but also whacks up the legal costs.]
Oct 30: Fran met with the investigation panel (still no independent chair). Only 2 of the 4 members turned up. She was asked to sign a lifelong confidentiality agreement and took it away to read. Later that evening and the following morning she received several calls on her mobile. A bullying message from a panel member was left [and remains] on her mobile saying she was not under any circumstances to share the confidentiality agreement with anyone (including us or a solicitor). Could she confirm this asap? Tip 4: Sorry. No tip. No words. 

Into November and still no independent chair.
Nov 6: The Slovens ask (agree to) Verita taking on the investigation independently.
Nov 15: Verita start the investigation. [Day 36/60]

A welcome period of peace for us at this point in some ways. The investigation is clearly in capable hands. Verita engage with us sensitively, keep us informed and get on with the job with the minimum fuss. Tip 5: Hugely important to be kept informed of what is happening and why. 

A new year. Sigh.

The Sloves want a meeting with us and Verita on Jan 23 to discuss the draft report.
Jan 18: We receive the draft report and, given the content, want our solicitor present at the meeting. The meeting is postponed to Jan 30 so she can attend.
Jan 23: Brain melt email received from the Sloves asking who we want present at the meeting because it’s “our meeting” and they want to offer us an apology in light of the findings of the report. [Tip 6: Try to put yourself in our shoes and imagine what we are going through. Announcing an apology will be forthcoming because a report ‘proves’ that you are to blame for our dude’s death is pretty inappropriate.]

Jan 24: Our solicitor lets the Sloves know we only want to discuss the content of the report at the meeting and not do the whole ‘apology’ business.

Jan 27:  The Sloves decide Verita are not to attend the meeting. Instead, we’re to share our comments about the report with the Sloves who will pass em on to Verita. We are to put our concerns in writing in advance. [Tip 3 again, Tip 7:  Pretty onerous suggestion really. Four days before the meeting.]
Jan 28: Verita are allowed to attend the meeting again. [Tip 3 again.]
We arrange to meet Verita on our own to discuss our concerns about the report. At this point, we don’t want to meet anyone from the Sloven family. The final version of the report is due on Feb 4.

Feb 6:  We find out from Verita that the final version is delayed because Sloven have decided that staff can comment on the draft after all. Final version is now due Feb 21. [Tip 3 and 5 again.]

In the meantime we’re confused because the report has some findings that are not apparent from the documentation we received from the Slovens back in July. We also seem to have a different set of minutes to those quoted in the report. Verita follow this up and it turns out that there is a load of previously undisclosed documentation. This is given to Verita on Feb 19  two days before the final report due. [Tip 4 again.]

We receive the final report on Feb 21 [day 144 of the 60 days allowed to complete the report].

232 days since LB died.

*We have no idea if a Serious Incident Panel was ever held.

Managed to meet Norman Lamb this week. In an Indian restaurant. There were some fairies working behind the scenes on this (thank you). Unfortunately, by the time I got to sit next to him, I was well into my second pint of lager [Rich and I don’t get out much these days] and hadn’t given a thought about what to say.

Ho hum.

“You know that young man who drowned in an assessment unit last summer? I’m his mum…” I started.

“Yes…I do… well, er, talk me through what happened again,” said our Norm, looking a tiny bit caught on the hoof.

“You don’t know about him, do you?” I said. “How could you not know about him?” Blubfest approaching, I started to fill him in on the briefest details but then he remembered. He did know. He’d been in a meeting where what happened was discussed that day.

And he was off. Full of rage, passion and commitment to getting people out of these terrible spaces that were considered their homes by so many commissioners, local authorities and others. By the time swears were appearing I thought ‘You’ve got it mate’ and left him to eat his curry.

“I’m sorry I didn’t immediately remember LB,’ he said, as I got up to go. “I have quite a wide remit and cover a lot of things.”

“Yeah, I understand that.” I said. “He’s the top of our list though”.

Photocredit: @georgejulian

Think the first word from the up to now missing Sloven CEO deserves cloud treatment. Quick and dirty. And not duplicating the repeated sections of today’s underwhelming interview or our Phil’s cutting questions and commentary. Speaks volumes.

One or two pretty important words missing.

Blogging way more than I want to. That’s my measure that things are wrong. I wish they were more right and I could fuck off out of this space for more than a day.

Anyway. Big charities have been playing on my mind since LB died (and earlier). I had a bit of a pop at Mencap and The Challenging Behaviour Foundation a week or so ago for releasing a press release stating they were supporting us. We didn’t feel they were ‘supporting us as a family’. We discussed this with them and appreciate they are working to support our efforts for change and are working for broader change. Some issues around communication…

My sister, love her, emailed the NAS (among other organisations) last week. The way in which family, friends and others are doing things to help just makes me dissolve. Every time. She got some craphole, round the houses response, along the lines of ‘thanks for flagging this up’ loser.

This was duly tweeted (unfailingly) by #justiceforLB and eventually ‘acted upon’ with a tweet from the NAS saying that what happened to LB would be shared with their followers and friends. Not sure what the difference is between the two groups but suspect money may be a defining factor. #Allegedly

The big share from NAS turned out to be tweeting the link to our solicitor’s press release. Eh? Big commitment by a charity founded in the 1960’s by families of children with autism. No statement about the death of a young autistic dude in an NHS hospital? No engagement at all really.

The Tizard Centre, also love em, called on the NAS to show the 90 second video montage of LB at their conference this week. Silence. Of course. Then the CEO tweeted this, earlier tonight (the day before the conference);

Seriously? Bit late to ask this really. Shouldn’t this be a call to arms for a charity set up to support families and people with autism? A scandalous level of care in an NHS setting leading the death of an 18 year old young man. Isn’t this sending shock waves through the NAS?

If it isn’t, what the fuck do you do?

Update: Mark Lever mentioned LB in his speech and various NAS people have been in touch offering help.

I was thinking about how so many of the posts I’ve written here relate to a small geographical area. Here’s a selection with a ‘map’ to give some idea of this. It’s good to go back to the funny times.

1. The bath and the bell
2. Lorry heaven and tea time
3. Saturday morning
4. Suing the dishwasher
5. LB and the Co-op
6. LB, the unlikely ethnographer
7. LB, Bollo and the voices
8. LB and the failed kebab
9. Taliban telecon
10. [fell outside the space limit, just beyond the JR Hospital, but included cos it’s so fab] LB and the mermaids
11. Medical spin and the sleep study
12. The EEG and the asylum
13.  “A picture of mum?”
14. The eel bus
15. The do
16. The park
17. LB, the bugs and the rubbish bin

I was reminded today of the fear parents of dudes like LB have of the future. The constant fear of ‘what will happen when I’m no longer around to protect her or him?’ A terrible, terrible thing to live with. A clear indication that, despite historical change, shift towards ‘community’ living and the introduction of ‘personalisation’, ‘personal budgets’ and other policy prescriptions, life for learning disabled people, and their families, remains uncertain, pretty much shite and impoverished.

And, as we found out, sometimes dangerous.

This was further underlined by a woman in her 80’s I met recently who said she was kind of relieved her son’s cancer was ignored for so long (because he was learning disabled) until it was advanced. Can you imagine?

Can.you.imagine.any.mother.saying.that? 

In amongst the positive support for #justiceforLB this week on twitter, a clinician (unnamed) got embroiled in a protracted debate around mortality and learning disabled people. His original point was to defend “the NHS”. Atrocity stories like LB’s death were unhelpful in the fight to protect this organisation for the better good of all (a typical middle class position that completely overlooks the sustained health inequalities that resolutely remain despite extensive evidence that they exist – yep, brain melt stuff). Doc Anon’s point seemed to be that learning disabled people die earlier anyway. They embark on an inevitable journey of (tiresome) co-morbidity, leading to early death. Get over it.

To cut about a billion tweets down to a sentence or two, there was robust rebuttal of his position supported by strong evidence to the contrary. I don’t think he really shifted on his thinking. And I don’t know how many other medics support his position.  Explicitly or implicitly facilitating/colluding with the labelling of unexpected deaths of learning disabled people as ‘natural causes’. That is ‘deaths that don’t matter’, ‘deaths that don’t count’.

If you expect particular ‘types’ of people not to live as long as other, more valued, ‘mainstream’ people (and think it ain’t no bad thing), it becomes easier to sweep the former under the ‘let’s not bother with’ carpet.

And our dude (along with potentially countless others) was swept into this space last July.

A week in which the independent report into LB’s death was published, the #justiceforLB campaign started in earnest on twitter. And the CEO of Sloven Health (crappit let’s ditch ‘health’ from now…) disappeared.

Before reading on, you might want to read Questioning Southern Health’s future fitness for purpose for some context.

And reflect on the way in which people are openly sharing difficult, harrowing or up till now, unspoken experiences to contribute to change. Just one example; I remember his jeans were wet… There are so many more.

… Back to the missing CEO. Well she seemed to be around Monday evening when the report was finally published. Tuesday evening, local news led with the ‘Connor Report’ Such a fab title for the dude who so consistently and so rightly ‘Connor’d’ everything.. ConnorCo, Connortown, ConnorCoscrapyard… He would have bloody loved it. And a big thank you to the local media geezules for getting what happened and calling it.

Medical Director spoke for Sloven. She popped up again on local radio the following morning and took a hammering. Wednesday, the CEO was due to be in the Radio 4 studio to discuss what had happened. Medical D by this time was probably lying in a dark room.

She chose not to appear.

By this point, our exceptional (accidental) campaign manager and the star behind the #justiceforLB tweets*, was creating a series of ‘Where’s Wally CEO?’ pics.

Where was she?

0ne of the key failings of the unit identified by the independent report was a lack of effective leadership. The CEO was, kind of awkwardly for the health biz world (I’m assuming), the Health Service Journal’s (HSJ) Chief Executive of the Year last year. The HSJ ran a short (damning) piece today about what happened to LB today. The CEO, again, was not visible. Where the fuck is she?

A year ago she was quoted as saying;

I am passionate about leadership because great leaders transform the lives of staff and our community. Leadership in Southern Health is about empowering our patients through working in a joined-up, cost-effective way. This means that in their own way, everyone here [9000 staff] is a leader.

Blimey. Empty words chased by more empty words. I know pretty much fuck all about management but 9000 leaders?

One would have kept LB alive.

*@GeorgeJulian

Since LB died, quite a few journalists have contacted us. We’ve referred em to our solicitor, Charlotte, and kept our heads down.  Charlotte spoke on our behalf a couple of times on ‘You and Yours’ on Radio 4. This felt like luxury. She was calm, confident and informed. With the report due to be published we knew we couldn’t continue to avoid some sort of media engagement. Not if we want action.

‘You and Yours’ asked us to be interviewed about LB and STATT (redacted) this week. Pre-recorded. The Chief Exec of Sloven was allegedly going to be live in the studio. Ok, we thought. Gotta be done.

It turned out Rich couldn’t do the allotted time as he was teaching. So I went to BBC Oxford yesterday afternoon. Dreading it. I’m happy to teach, give papers at conferences but talking on national radio about LB’s death? Eurgh. Serena, a cheerful and sensitive, broadcast journalist (first one I’ve met) (broadcast journalist that is), took me to a small, windowless room on the third floor (or 2nd floor), talked me through what would happen and left. I sat with a set of headphones on. And started answering questions from Winifred, in Salford. (Bit familiar to call her Winifred but it was a bizarre situ).

Awkward, uncomfortable and kind of excruciating. When it was over (about 20 mins) I sat there. Not knowing if I was supposed to press a button to hang up. There wasn’t a phone or anything. ‘Eurgh,’ I thought.

Serena pitched up and took me to the ground floor for a cheeky BBC Radio Oxford interview. We agreed if it was crap she’d bin it. She’d read the report, been part of the social media wait-athon on Monday before the report was published and obviously understood the key issues. She asked an unscripted set of searching questions. Much easier.

This morning we listened to Phil Gayle give the Sloven Medical Director a bit of a hammering (around 1 hr 7 mins, available for a week). When he said, in relation to the CQC inspection in November, ‘… and it’s staggering to those of us outside that a young man can die in a hospital, in a medical unit, and no improvements be made. She [his mum] said to us how could this happen and how could his death not be a flag that something was wrong?’… we kind of cheered and made a note to sign up to the Phil Gayle fan club.

Lunchtime it was ‘You and Yours’. My interview first. Halfway through the programme. A few minutes of eurgh. Then Winifred.

“We invited the Southern Health Trust to come on the programme. They didn’t want to. They sent us a statement…”

Oh.

Fuckers.