Those bloody tears won’t stop today. The old tap effect is back with a vengeance. A year ago today we asked to get LB admitted to a small, specialist hospital a couple of miles from home for “assessment and treatment”.

He never came home.

Driving him to the unit was so sudden, so extreme, I’m not sure he even shut his laptop before we left home. Or said goodbye to Chunky Stan. It was a short term measure. A few weeks at the most…

It’s almost impossible to breath. The intense pain, the what ifs and the what.the.fuck? He wasn’t even ill. How the hell could he die? It’s completely incomprehensible*.

The #107day campaign is a good distraction. It’s remarkable to see so many people pitching in and supporting the campaign. Truly remarkable. And yesterday was a bit brighter. I spent the afternoon at Sting Radio on a show dedicated to a celebration of LB’s life. We chose five of LB’s fave songs at the weekend. The DJs asked questions about LB among news features, top 10 love songs and rock songs and a debate about whether independence for learning disabled people has improved. The genuine welcome, warmth, empathy, outrage and complete understanding the DJ dudes demonstrated yesterday was a tonic.

The songs:

1. Devine Comedy National Express
2. Gorillaz Feel good, inc.
3. Beatles Here comes the sun
4. Dexy’s Midnight Runners Geno
5. Keane Bedshaped

Thanks guys. You rock and I had a ball.

DJ Superhero reading through his script with DJ Sporty and DJ SweetDawn in the background

DJ Politics, DJ Sporty, Tom and DJ Master of Rock with the Oxford Mail photographer in the background

DJ Stingray Paul, DJ G-Myster, DJ SweetDawn and DJ Emma

DJ Superhero, DJ Horror, Tom and DJ Politic. And Geneva. Minus her head. On her last show with the DJ dudes

* We found out from the exceptional Saba Salman tonight that three staff are suspended. Sloven and NHS England were unable to tell us this.

We’ve been asked what  #justiceforLB looks like by various people over the past weeks. Tonight we received a reminder from the real David Nicholson’s office that we said we’d email this to them. A very cool and reassuring reminder.

We agreed we’d email our list during the meeting last week. But it seemed a bit too enormous to knock into ‘proper’ shape, too scratching at the surface, too insignificant really considering that LB died. Howl. And we were/are too weighed down/crushed and battered over years by the baseline level of shiteness that exists in learning disability provision to really come up with a meaningful list of anything.

But, hey, let’s run with our fledgling list (already emailed to NHS E towers). In advance of the launch of the #107days of action campaign (to coincide with the date LB went into the unit and the time he spent there), here’s our starter for 10 for actual change (and no more talk/lessons learned) to improve the lives of learning disabled dudes:

What does #justiceforLB look like? 

For LB

• To achieve all of the below
• Staff, as appropriate, to be referred to their relevant regulatory bodies
• A corporate manslaughter prosecution brought against the trust
•  Meaningful involvement at the inquest, and any future investigations into LB’s death, so we can see the Trust and staff account for their actions in public

For Southern Health and the local authority

•  Explanation from the CCG/LA about how they could commission such poor services
•  Reassurance about how they will ensure this cannot happen again
•  An independent investigation into the other ‘natural cause’ deaths in Southern Health learning disability and mental health provision over the past 10 years

For all the young dudes

• A change in the law so that every unexpected death in a ‘secure’ (loose definition) or locked unit automatically is investigated independently
• Inspection/regulation: It shouldn’t take catastrophic events to bring appalling professional behaviour to light. There is something about the “hiddenness” of terrible practices that happen in full view of health and social care professionals. Both Winterbourne and STATT had external professionals in and out. LB died and a team were instantly sent in to investigate and yet nothing amiss was noticed. Improved CQC inspections could help to change this, but a critical lens is needed to examine what ‘(un)acceptable’ practice looks like for dudes like LB
• Prevention of the misuse/appropriation of the mental capacity act as a tool to distance families and isolate young dudes
• An effective demonstration by the NHS to making provision for learning disabled people a complete and integral part of the health and care services provided rather than add on, ad hoc and (easily ignored) specialist provision
• Proper informed debate about the status of learning disabled adults as full citizens in the UK, involving and led by learning disabled people and their families, and what this means in terms of service provision in the widest sense and the visibility of this group as part of ‘mainstream’ society

And, if anyone would like an example of how the final point can be achieved, tune in to the Phil Gayle Show on BBC Radio Oxford where he, and his team, regularly cut through the crap, focus on what is important and have learning disabled people as guests on the programme to talk about what is important to them.

As it should be.

An anecdote. From yesterday:

“I remember when LB came to France to watch Myfi in the gym competition. ‘Myfi’s going to win the gold, Krissy’, he told me seriously.’Well, maybe LB, maybe..’ I said to him. Anyway, when it was her turn you should have seen him. He was transfixed. He watched her really intently and they all looked the same really, the five girls. But he watched her and she won. And when it came to the clapping? Well, you couldn’t ask for a better supporter.”

It’s late. Probably too late to write this. Rich has gone to bed. After an evening of recounting, revisiting and rehashing the same stuff we’ve now been talking/howling/raging and weeping about for eight months. We talk at home, at bus stops, in the supermarket. The most extreme stuff imaginable. In London yesterday, Rich said to someone in a cafe who asked what he was doing that day ‘You wouldn’t believe me if I told you’.

Extreme spaces and extreme non engagement.

LB, a fit and healthy, quirky, remarkable, self assured and beyond loved 18 year old entered an NHS hospital nearly a year ago now and died. Through proven neglect. This isn’t ‘news’. This isn’t well known (well outside of a grassroots campaign, #justiceforLB, that deserves a spotlight of its own). We’ve endured brutalisation through the actions of the “Trust” (Sloven) and, as the meeting today with NHS England staff demonstrated, a broader carelessness, disregard and disrespect. A simply ‘doesn’t matter’ attitude.

If LB hadn’t been learning disabled, his death would have provoked instantaneous outrage and engagement. We’ve lost count of how many ‘atrocity stories’ since LB died that have been headline news. We’ve fought like fucking billy-o to get accountability. We managed to get an independent investigation into his death commissioned and, with a fight, published. A report that categorically states that LB should not have died.

LB should not have drowned in a bath in a hospital. In a unit with four ‘specialist’ staff and five patients. He was diagnosed with epilepsy. He had documented increasing seizure activity as a consequence of the medication change imposed by the clinician responsible for him. It was recorded that he was sensitive to medication change. We told them he was having seizures when he was in there. Knowledge they chose to dispute.

Why would you dispute seizure activity in someone diagnosed with epilepsy, sensitive to medication change, when their family flag up seizure activity? Where in the the fucking curriculum/on the job experience does stamping out any sniff of a known risk feature?

And yet, the CEO of this shoddy, beyond unfit for purpose outfit, was interviewed on local radio a week or so ago, bleating about the ‘false positives’ that led to another CQC inspection fail. Those pesky selective false positives that led her, and her board, to assume they were providing adequate (we ain’t even reaching for good here) care? Sheesh. What is a Chief Exec and her board to do in the face of such insouciant staff actions?

Yowsers. This is horrendous. At the very least the relevant bodies must have collectively swooped in and sorted things out. A young man drowning in the bath in a specialist unit? Blimey. At least they must have supported the family in every way possible. The various bodies must have chucked in everything possible to ease the intense pain this family have experienced.

Yeah.

…

Another meeting with NHS England this afternoon. This did not go well. They wanted to talk pathways and processes. We wanted to talk people.

“Have any staff been suspended?” asked Rich.
“Yes”, said NHS E (2)
“No” said NHS E (1)

This was not a good start.

It got worse.

“Were the patients in the unit given counselling or support after LB died?” I asked. “It was a tiny unit so they must have witnessed what happened. And LB had a good relationship with couple of them. Were they supported?”

Silence.

“Were their carers/families contacted and told about what had happened?”
“Sloven did put something on their website because, as you know the unit was closed to new patients after the CQC inspection…” (This website piece includes a sentence about how ‘staff are being supported through this [improvement process.)

Rich asked them what had actually been done rather than what potentially might happen. Nothing.

Rich left.
And I left shortly after.

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.