When I did my degree at Oxford Brookes I did a ‘thinking photography’ course as a floating module. I was a bit constrained in being able to turn up to the whole course, but I remember the content and loved the emphasis of turning attention from the (typical) focus of photos and smashing it up. For the coursework, I looked at family photos featuring alcohol and created a family album where the family members were the various glasses/bottles of alcohol rather than the people. There was a Baby Sham, Little Stella and Uncle Bud from memory.  (It was better than it sounds…)

Stripping away family again, it’s possible to imagine LB’s life from purely health/social service service terms.

Toddler times: Got ourselves a new one here fellas… He’ll need a childhood of regular appointments, prodding, pushing and obligatory report writing. Remember make sure access to ‘specialist’ services is closely monitored by gatekeepers, hoops and delay. Talk about services even though they aren’t available (it sounds better). An example phrase? “He isn’t going to amount to much but we may be able to help more when he reaches puberty. Respite may be available though is very much in demand“.

School years: He’s growing. Time to ease off and reduce attention to school medical reviews as much as possible. Weigh him on a regular basis. And make sure any issue, or potential issue is dealt with on an arbitrary, discrete, moment by moment basis. There’s no need to develop any understanding of the patient. I repeat, there is no need to develop any understanding of the patient. It’s about containment.

Unexpected medical events: Ah. Suspected seizure activity? Don’t panic. It’s often anxiety issues with these types. Try and do the relevant tests but if inconclusive discharge and suggest star charts.

Transition: Core time for ‘problems’ to emerge. Especially with these boys. Remember. Keep your eye on the main target; a smooth, undisturbed shift into mediocre (at best) services. As much as possible, make sure expectations are low or non-existent. It makes things much easier in the long term. Eh? What was that? He was diagnosed with epilepsy eventually? Ah. Not to worry. They don’t have real epilepsy.

Crisis: Eh? Tsk. Well just ignore for now. You could chuck more direct payments his way. Eh? What was that? Oh. Well ok, admit him to STATT. He can stagnate there for the time being. What was that? The cost? Well not for that level of service. It’s known as an example of good practice outside the county (I know, I know, but who are we to question?) And anyway, it’s out the way by the ring road. Out of sight. And most patients/service users stay for months or even years. Sorted.

July 4th: Eh? What was that? Fuck. Fuck. Fuck. Fuck. Remember. We did nuffink wrong. Did you get that? We.did.nuffink.wrong.

We received the response from the Interim Chief Executive of Oxfordshire Clinical Commissioning Group yesterday. After finding out that a commissioner had visited the unit last January as part of the Winterbourne View Joint Improvement Programme, seen it was shite and apparently done nothing, I’d rung him in a spin a week or so ago. After a bit of a rant, we agreed I’d email him the question I was randomly asking him;

Bit clunky but here it is;

Can you explain what the CCG has done since Connor died to investigate as to how and why the CCG continued to commission provision they historically knew to be inadequate?

The response is 10 pages long and contains a right load of old murky happenings and, more importantly, non happenings dating back to 2011. I won’t detail the content here. But I will say that it indicates (or reinforces) three things:

1. No one comes out of this well.

2. The response to Winterbourne View has to be up there in the ‘top 10 of ineffectual (or worse) actions’ ever.

3. LB was the victim of institutional disablism. As Jenny Morris said recently; what happened to him was the latest example of the “systemic failure to really value the lives, views and experiences of people with learning difficulties” and of the tendency to “devalue the knowledge, experience and role of parents [and other] family members”.

It really is time to say enough. Stop all the talk. Stop all the pointless meetings. Stop ‘learning lessons’ and other billy bullshit.

And act.

LB had a good chunk of sibs and friends. We’ve a trunk of photos, drawings, bus tickets, pictures and other stuff, drawn with and for him over the years, countless activities, do’s, parties, holidays, outings and just hanging out. Sort of organic person centred stuff. Stuff that just happened.

There was one dude that LB looked up to and idolised. And that was Dan Rolland. Dan has featured on this blog a couple of times (here and here). A few years older than LB, they were at the same school. Dan was a complete character. Fruity and edgy. I can remember a school concert where he was pretending to play the sax and generally having such an outrageously good time, he was show stopping. (I think some staff were probably worried he might literally stop the show, but he was comedy genius and I laughed till I cried).

LB found him completely hilarious, not surprisingly. He’d regularly come back from school, bouncing high on his heels with delight and announce that he and Dan had been smoking weed in the playground. They were going to share a flat in Blackbird Leys when they left school. I can remember going to school for meetings sometimes and LB would be in Dan’s class. Laughing his socks off at whatever Dan was saying.

Any mention of Dan continued to make LB laugh after Dan left school. I don’t know how many time billion times he was mentioned over the years. We only had to mention his name and LB would chuckle that magical chuckle and ask more questions about Dan.

More tears when this popped up on our #justiceforLB facebook page last night. A week in which the dude has three red double decker buses dedicated to him, his legendary friend left him a message.

Thank you Dan.

Oh my blinkin-blimey. With news of the NHS England review panel into the deaths of patients receiving mental health and learning disability services at Sloven Towers since April 2011, our backstage investigative tweeters were busy at work.

Before breakfast news was in:

The West Hampshire Clinical Commissioning Group reported 36 unexpected deaths as SIRIs (serious incidents requiring investigation) in Slovens mental health/learning disability provision across a ten month period. This seems astonishingly high (almost one a week)* but was no cause for concern (or even note) apparently. Back in May 2013, the Sloven board meeting papers brush over serious incidents with the following flimflam, completely erasing the human;

Eh? There were 10 serious incidents and 5 unexpected deaths involving SIRIs in April 2013 (in MH/LD services) and the Chief Medical Officer just gives a load of figure flannel?

And another peculiar thing. LB seems to be the only one of the 36 patients to get a mention in the board minutes in that period. That now infamous statement about the service user and natural causes back in July, a couple of weeks after LB died. Not a peep about the remaining 35 (and the however many other patients who died but weren’t categorised as SIRIs). That’s a bit puzzling, I thought.

I mentioned it to Rich when he got back from work.

Without a blink he said “Well we’d got our lawyer by then and had asked for all the records. That’s probably why he was mentioned in the minutes.”

Stinky Pete stench at Candour Crush Towers.

*To provide some comparison Surrey and Borders Partnership NHS Trust report 8 unexpected deaths among inpatients between October 12 and Jan 14.

Yesterday evening we were completely bowled over, and pitched into a tap tear space, by photos of LB’s buses. We’re trying to keep a lid on the #107days actions and not give too much away in advance but this was too much to not shout about. How.fucking.awesome?

What else is there to say? The dude had massive, steadfast, consistent dreams around ConnorCo and a fleet of vehicles. There are now three (3??) double decker school buses dedicated to him. Just makes me cry. With more to come on the fleet front…

Pretty much straight after seeing these pics, I got an email from the Real (and now retired) David Nicholson, responding to our Connor Manifesto. All power to Rodgers Coaches and the social movement that is #107days that I didn’t read this email straightaway. I hunkered down celebrating/weeping/reflecting on the realisation of LB’s dude dreams. Dreams I never thought imaginable.

But hey, how did David Nicholson respond?

Thoughtfully, comprehensively and apparently sensibly.

Some of the content is a bit chuck in the nearest skip because words won’t make a difference. Ambitions to do x, y, z …. “Commissioners undertaking visits to the services they commission in recognition of the importance that they see the service first hand” is meaningless given what we now know… They have to know what they are looking at and actually act if what they see is poor. Not just ignore it.

But there is commitment to following up all deaths in mental health/learning disability services provided by Sloven since 2011 with an independent panel, commissioned by NHS England, formed to review these deaths and make a recommendation about whether further investigation is needed.

There is a plan to take forward work to establish a national learning mortality review to deliver improved information about the deaths of people with learning disabilities.

And reference to the recent review of the Mental Capacity Act and work with the CQC in ensuring monitoring the use of the Mental Capacity Act in the hospital inspection regime.

I’m too caught up with thoughts of LB’s fleet, and what should have been, to respond sensibly right now. But I will say thank you for making LB a priority in your final days at work. It means a lot.

And I hope others follow your lead.