I had a conversation this morning about the Winterbourne View Joint Improvement Programme and proposed changes to learning disability provision in Oxfordshire. I have a bit of a problem with both endeavours. The first because it ain’t really achieved anything and the second because I suspect it won’t.

I won’t say much about the Winterbourne gig other than, yes, it’s good that the ex-patients are being well looked after by the Improving Lives Team (small candles, I was told, that are important). But there are an unknown number of dudes who have (and probably are) experiencing abuse or neglect in these hellholes (and in other spaces) without any attention or apparent reflection. Getting people out of inpatient units is the priority for the Winterbourne programme but there seems little or no reflection or consideration about the impact of the experience for those people who have stayed in them.

LB’s mate James, for example. Despite the authorities knowing about what happened to him in a unit in Norwich where he spent six months of his mid teens, he and his family were offered no support to help him recover (if that’s possible) from such brutal NHS inflicted treatment (not treatment in the medical sense). And his parents have got nowhere in trying to get some sort of accountability for James’ experiences in the unit. How can this be?

A random thought I had in the nine months since LB died was that James, and LB’s other peers, would get a bit of a gold plated service in Oxfordshire to get em through transition and hopefully set up in better spaces. A fit and healthy young man dying (dying???) as an outcome of completely shite provision would shake up the relevant bods/organisations to look lively and do their jobs properly.

This was so off the scale of naivety I wonder what the fuck I was thinking. Particularly given that LB’s death didn’t spark any ‘action/change’ in the unit for 8/9 weeks till the CQC pitched up. The Sloves and others really don’t have a clue how completely crap they are. James’ transition meetings in the past few months have been singularly and shockingly poor.

I dipped into an old favourite book earlier; Charles Lemert’s Social Things. He says in the now dated edition I have that ‘the oppressed are better practical sociologists and, possibly, the only ones truly awake to the social world’. Yep. I hear practical sociologists all the time in the form of dudes, family members and carers talking complete sense about how things are. And what’s wrong/what needs to change. I talked to Pat again earlier today. She’s now 83 and still fighting to try and get her son proper support. After sixty odd years. Sixty years???

There’s a malaise in the structure and culture of services. No one really has an inkling of what ‘good’ looks like and crap (or worse) is the default position. Not crap through any intent (necessarily) but crap through a complete lack of recognition that dudes like LB and James are young people. With their whole lives ahead of them. Same as the sons and daughters of the myriad professionals who work in health and social care. But. Of course. They ain’t to those professionals.

A draft project brief for changing services in Oxfordshire has been produced by NHS England, again, probably with good intent. I can’t understand a word of it. It’s just a tumble of jargon and nonsense; ‘pathways’, ‘quality’, ‘deliverables’, ‘interfaces’ and ‘dependencies’… Complete gibberish. We’re talking real people, with real lives (well other than LB of course) and families/carers. This isn’t only dehumanising and distancing language, it’s also stifling and blinking boring. Where’s the innovation, the creativity, the engagement, the celebration, the aspiration? Why, in the professional sphere, are the lives of learning disabled people so fucking cloaked in shite?

I’m a candy crush hound at the moment. I started playing it the week before LB went into the unit and I find it distracting, absorbing at a superficial level and enjoyable. I’m at a level (won’t say which one as I don’t want to incite envy or ridicule) in which a party popper comes out and blasts away the whole board of candies. Every time it happens (because I’m stuck at this level) I think about how this is what’s needed. The whole fabric of learning disability provision in health and social care needs to be blasted away. And replaced with a fresh and flexible system led by the practical sociologists – the dudes, families and carers – who actually understand. And recognise.

Day 28 of #107Days adopted by kara2008 is about little drops of brilliance; ‘the brilliant little things people have done to help [our dudes]’. Well there have been a lot of little drops along the way but two who spring to mind are Big Sue and Tina, two teaching assistants at LB’s school. These two (among exceptional staff there) have a love, commitment and determination to make sure the dudes have a great time and experience stuff they may not otherwise. The stories they have to tell about their exploits and adventures are both hilarious and heartwarming. An early morning trip to Blenheim Palace to visit before it was open to the public became an exercise in logistics as there was no wheelchair access and quite a few stone steps to negotiate. This was no problem for our top team but they did say, once in, they hadn’t thought about one dude who loved to lick furniture. They’d brought him to the equivalent of a sweetshop.

LB loved em both. Tina took him travel training and Big Sue pretty much everywhere else. When he developed an interest in mermaids, Big Sue drove him down to the river at Marston where he sent his message in a bottle. He received a reply from the mermaids, some shells to put under his pillow and, over time postcards from various sunshine spots around the world.

When LB was in the unit, Big Sue, Tina and other school staff did their utmost to enable LB to do the activities he’d always enjoyed. He clearly didn’t want to attend school any longer but they were prepared to pick him up and drive him directly to Trax and the farm. Big Sue was at Trax with LB the day before he died. He loved it as always. Working on his Nissan engine.

After LB died they asked if they could be pallbearers at his funeral. Sticking with him to the end. And dressing to perfection.

Two drops of brilliance. #107Days

Funny old five days at a symposium on ageing in Toulouse last week. Intense, lengthy,
(largely French) sociological theory saturated talk and discussion.  This proved challenging for the translators, Julia and Luke, up in a viewing box above the auditorium. Translating for the small number of non-French speakers.

The days were long. Punctuated by buffet lunches made by women from a local
refuge. Delicious flans, salad, red wine and more discussion. Time wasn’t important though it was a feature in many presentations.

I stayed in Toulouse when I was about 15. On a French exchange trip. I remember the
municipal pool, Murray Head and the Carrefour. On this trip I travelled from the university by Metro and bus. Past the neighbourhood I stayed in all those years ago. To the hotel. Across the road from the Carrefour.

I thought a bit about my pen pal Valerie on these journeys and tried to imagine what she looked like now. Or if I’d recognise her parents among the passengers on the bus. I
remembered her elderly grandad who lived with them. How he’d take his slippers
off after each meal and rub his feet carefully and methodically on the floor.

Saturday afternoon, the Swiss academics stepped up. Discussing frailty, fragility and ‘handicap’. Up in the translation box, Luke was alone. The translator two had become one. There were pauses in translation. One presenter, talking about the experience of Alzheimer’s disease critically raised the argument that if someone has ‘gone in the head’ [quote] they no longer have an identity.

We came back to this in the questions. The presenter talked about the ease with
which people can be treated as not fully human if they’re thought to have no ‘identity’. The translation faltered and stopped. The person next to me summarised the remaining discussion. Five minutes condensed into one. It was to do with violence, power and vulnerability. And the responsibility we all had to challenge the way in which
certain people are treated.

The next morning I walked across to the Carrefour to buy some sweets to take
home. It was shut. On the way back to the hotel, passing some elderly people, my
rage again grew at LB’s death. And how it captures and symbolises the complete lack of regard and worth attached to certain people.

Discussions over the last couple of days, with Rich, Rosie and others have got me thinking about what’s happened since LB died in terms of (official/professional?) support offered to us. And how if LB had been murdered, died in a road death, mass fatality, or any other ‘critical incident’, we would have had a Family Liaison Officer.

The National Policing Improvement Agency states;

“Family liaison is, without a doubt, one of the most demanding roles performed by the Police Service. It is also one of the most important because it is one of the the most significant relationships that we develop with the families of victims, at one of the most difficult times in their lives”.

The Family Liaison Officer role involves conducting appropriate investigation and the human rights of the family. Acting as “a channel for welfare, occupational health and support”.

Wow.

Now I don’t know how this works in practice. Maybe it’s shite. But I suspect not. When your child/relative dies a preventable death in the NHS you aren’t a ‘family of the victim’ for several months or years (or ever). Until that ‘preventability’ is established. You ain’t really anything. Even though you’ve experienced the same brutality as any of the criteria above. A brutality that is arguably worse because you thought your child was in a safe space. With people who cared.

So no Family Liaison Officer. To look out for our human rights, and welfare. Instead we were Ieft pretty much alone with varying crapshite communication from the Slovens. We got a letter a week after LB died from the Acting CEO. After running through the distancing “deeply saddened and sorry to hear of the death of your son” (as if it was the last thing she might have any responsibility for), she finished with the meaningless and completely throwaway sentence;  “If there is anything we can do to help or support you please do let us know”.

Hi Acting CEO… We’re all kind of falling apart at the seams here and struggling to hold onto anything. Not really in a space right now to think what help or support we might need. In fact, we can’t think of fucking anything other than being forced to think about coffins, clothes, flowers and cremation/burial for our dude who should never have died. Can you even begin to imagine that? Agreeing to switch a machine off that is fakely keeping your child alive? After he’s drowned in a bath in a specialist unit that you are responsible for? 

But hey, thanks for the letter.  

It was apparent to us from the moment LB died that his death was preventable. But the only support ‘offered’ to us was from an organisation (with others) responsible for his death. How can this model possibly work?

A recent report by the NHS Never Events Taskforce takes a sensible and informed approach to how the NHS should respond to so called ‘never events’. It encourages imaginative forms of ‘restitution’ such as offering practical and therapeutic help. And the importance of making ‘sincere apologies, not what looks like a standard letter from the Chief Executive’. The old Sloves may have an award winning and inspirational Chief Executive (stay classy Health Services Journal/judges) but they don’t half shine when it comes to exemplary ‘how not to treat families when you’ve let their child die’ actions.

But LB’s death didn’t even count as a ‘Never Event’.

It was too never ever for Neverland.

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.

I forgot to include a section for the Secretary of State for Health in my previous update post. Sorry. But I suppose this way he gets his own post, almost. It kind of pains me but I have to take my hat off to him. We received a handwritten letter this week in which he wrote about how shocked and sorry he was to hear about LB’s death.

“Nothing I can say can make up for the grief and sadness you and your family will feel at his loss – he was clearly a remarkable and wonderful young man…”

He apologised on behalf of the government and the NHS and said he’ll keep a close eye on the case. He ended by saying “In the meantime may I once again say how terribly sorry I am that this entirely avoidable tragedy happened.”

It’s a letter from a person. Without jargon. Saying it like it is. Thank you Jeremy Hunt.

We also got a copy of a letter from the Trust Chairman, written to my big sis. She wrote handwritten letters to each board member about the way in which Sloven have behaved since LB died. The response goes through the condolence spiel, talks a bit about accepting the findings of the Verita report, misunderstands her point about Slovens behaviour since last July and ends with the following paragraph:

To be fair to the guy, he has changed his position since writing this letter and mentioned during the board meeting this week that the non-execs may not have been as fully informed about everything that has happened as they perhaps should have been. Yep. And he put a stop to this relentless pressure. But setting that aside, what a contrast in the two letters. If there are any lessons to be learned about communicating with families in such terrible, terrible circumstances, I think Jeremy H has nailed it.

Drop the jargon, drop your own agenda, get your pens out and write as one human to another.