1000 days

Posted on May 20, 2016 by sarasiobhan

As we get to towards the end of the third year since LB died my rage is reaching levels I had no idea existed. Probably in direct proportion to the mountain of shite that continues to unfold at Sloven towers. Despite enough evidence to sink the Harmony there is still no action.

Sloven, and everyone else who should have acted and hasn’t, has now stolen a further thousand days of our lives. 1000 days… during which we’ve been unable remember LB properly.

I hate the word grieve. I don’t want to ‘grieve LB’. And I’ve a serious dislike of ‘models of grief’. I want to think about LB. I want the space to remember, in intricate detail, everything about him. His love, laughter, being, touch and smell. His sense of humour. His astonishing, duck like hair. His happiness, thoughts and reflections. His dislike of Simon Mayo and love of all things human rights. But I can’t.

I’m enraged that, like so many others, the remaining pieces of our hearts, those pieces that somehow hang in there despite the harrowing and incomprehensible death of our dude, are battered beyond recognition by state actions and non actions.

Inexcusable. And barbaric.

1000 days… And no end in sight.

Rebel engagement

Posted on May 18, 2016 by sarasiobhan

People, patients, self advocates, families, picnics. A crowd sourced room (after Tim Smart pulled the plug on the extraordinary board meeting with a threat of legal action).

An opportunity for the Council of Governors to meet the public and listen. They all had the date in their diaries after all…

Peter Bell, Arthur Monk, John Green and Richard Mandunya we salute you.

Photos, postcards and a meeting postponed

Posted on May 15, 2016 by sarasiobhan

We found some old photos yesterday. And a postcard LB sent to Stan in 2008. Tears, chuckles and family banter. The postcard is addressed to Stanley McRogers, LB’s name for Chunky Stan. And pretty vague address details. How the hell did it get here?

We decided it probably arrived because of the wonderful, intuitive work of a postman we had for several years. A postman who collected Marilyn Monroe memorabilia.

Tonight we found out the extraordinary governors meeting organised for 17.5.16 with a controversial agenda has been postponed. The official statement from Tim Smart, the recently board chair appointed by NHS Improvement, states:

You’d think a trouble shooting NHS Improvement appointed (interim) chair has sufficient understanding of the legal ramifications of proposed actions, or easy access to advice from NHS Improvement, to make authoritative decisions… But no. The flakiness of not only Sloven but the broader bodies around them once again laid bare. And yet more delay.

An hour ago I tweeted:

It’s nearly 1am.

Sloven leading, as always, with actions that make fuck all difference to patient care…. They can’t sign off an epilepsy bathing protocol until nearly three years after LB died but they can change a typo on a news release after a tweet, late on a Saturday night.

Where is the human?

‘Painted a different colour’ and the picnic spot

Posted on May 12, 2016 by sarasiobhan

Another day, another shower of Sloven related shite. The (one hour) Sloven extraordinary governor’s meeting next Tuesday has been ‘transformed’ [painted a different colour] into a set of observations by pretty much everyone other than the caretaker and cleaners who I suspect would have more sensible and insightful reflections than the newly appointed interim board chair, improvement director, nursing director, CEO and two other random peeps listed on the agenda. The emergency motion that generated the meeting has been pushed to a secret session after public questions. Within the one hour meeting.

Yep. Really.

[Essential context here from George Julian, Mark Aspinall and Peter Bell].

Beyond unacceptable. And so disappointing from Tim and the Turnaround Team. Big sis, Agent T, texted this morning in frustration to say ‘I don’t know why they surprise us every time. I think there must be a hint of not being pushed (or seen to be pushed) by some pesky families…’ This echoes Tom saying

The ridiculous thing about all of this is that when I look at what families demand from Southern Health and the way that they just don’t change I sometimes worry that maybe we are asking a lot or being unreasonable. But then I list the demands of the families and they shouldn’t even be demands, they are such basic requests that if asked on behalf of any other group in society would’ve been dealt with straight away with no barriers. So why does it take so long when it’s for those with learning difficulties?

Agent T and Tom are both right. We ain’t being unreasonable or pesky. We’re calling a failing trust out. Repeatedly. With enough evidence to sink a Sloven flotilla. Sloven, meanwhile, have shown no signs of recognising/acknowledging failings. Tom captures this brilliantly in his post.

Hey ho.

We’ll be heading to the Lyndhurst Community Centre on Tuesday for the unfolding of the fake governors meeting. Meeting My Life My Choice champs at Oxford station, picking up Agent T and Ally Rogers en route and hooking up with George Julian and others somewhere in the New Forest.

None of us should have to do this.
Thoughtful action by enlightened governors shouldn’t be closed down as it has been

I just hope there’s a good spot for a picnic after and a bit of sunshine. Sounds like we’ll be booted out sharpish.

In related news, My Life My Choice received a second mysterious letter recently. Written to then board chair, Simon Waugh, in May 2014. Copied into Monitor and NHS England. Wonder if they will be there on Tuesday? I’m sure we’ll have enough egg sarnies and a flask of tea or two to share…

The message

Posted on May 4, 2016 by sarasiobhan

My blood chilled, 20 seconds or so into the message left on my phone at work, when the caller seamlessly tipped from being sorry that LB died to calling me a vindictive cow. And didn’t hold back from sticking the boot in.

Another day. Another Sloven related failure.

The kids, love em, and their cousins/mates, were instantly outraged, enraged and upset. Their united, supportive and vocal position, that this is so fucking wrong, continues to be one of the lights shining through this complete fuck up. Combined with widespread condemnation by so many others.

The call is vitriolic, nasty and beyond inappropriate. But it’s simply part of a set of improbably, inappropriate, nasty and worse responses we’ve endured since LB died. Evidence of a system in which defensiveness, bullying and family crushing flourishes.

Just a few examples:

The letter from Katrina Percy.

The Dr Crapshite stuff and mother blame.

The Oxfordshire County Council commissioner’s letter to disability activists

The Sloven briefing to David Nicholson…

This afternoon, Luciana Berger tabled an Urgent Question in parliament about Sloven. There was anger, much sense and serious concern demonstrated by those present. (Not Burt). John Bercow concluded the debate stating that Sloven need to see the Hansard documentation of the debate. Good.

But not good enough.

We’re beyond weary. Bouncing between extreme love for the likes of Luciana Berger, Norman Lamb, Paul Lelliott and others at the CQC, Andrew Smith, Deb Coles (and the unfailing support and contributions of #JusticeforLB campaigners). And the pin drop pots of non action wedged within the Department of Health, NHS Improvement and NHS England.

Listening to this message was unspeakable. Reading the documents listed above was unspeakable. I don’t know how much more unspeakable we are expected to endure. We were, hilariously, stupidly, copied into an exchange about the governors response to us in which a Sloven comms person advises the governors to ‘soften the tone a bit’. Just astonishing.

Why don’t you all re-read Mark Aspinall’s emergency motion and recognise your craphole, seedy actions for what they are. We ain’t the problem here. As much as it makes you feel better to think so.

In the spirit of the openness of the campaign, I’ll just say you are all a fuckingpileoftosswankpisspotfuckscummerybastards.

Dark places and being peggable

Posted on May 3, 2016 by sarasiobhan

The leaking of the Sloven governor’s emergency motion was a bright spot. Whatever bickering and political wrangling it has generated, Mark Aspinall called it as it was, and is. Simple as. It’s now up to the remaining council members to demonstrate their integrity and act accordingly. With appropriate scrutiny from the regulatory and public gaze.

This latest twist has generated a lot of ‘thank fuck for that’ type comments from family, friends, colleagues and supporters. People have been coming up to us in the street, on the bus, in lifts, saying they can’t understand how the Sloven board are untouched (well other than Mike Petter’s (possibly stage managed) exit). Nope. Neither can we.

We get emails from people about how the campaign has given them the energy, confidence, fight to try to get some accountability and justice for the death of their child, sister, brother, partner, parent, friend. This is sort of good. Only ‘sort of’ because the system shouldn’t be so consistently shite. We shouldn’t have to draw confidence from other people’s experiences. The right thing should be done. With the lightest of family involvement. But we all know this is bollocks when it comes to preventable deaths in the public sector. Particularly those involving certain people.

There has also been a lot of ‘inspirational mum’ stuff…

One of the things that came through clearly from the STATT records was that LB fully expected me to come and bring him home. [Howl]. Of course he did. I was his mum. I fought his corner with every bone in my body from the moment he was pegged as peggable. From the moment he started at an ‘integrated’ nursery in which the induction session involved only certain parents and pointing out separate pegs for the special needs kids who ‘get transport’…

Endless battles. Transport, after school club, respite, getting a diagnosis of epilepsy, transition, direct payments, disabled parking bays….

And then, stupidly, thinking he was temporarily in a safe space, if nothing else…

When I got the STATT records, back in the day, I cried in a new way. A different way to when LB died. Which was also indescribable crying.

Over two years later, we sat through the inquest evidence. Further unfolding of the (inevitable) preventable death of LB. With a topping of toxic mum blame. And still no accountability.

The simplicity and truth and certainty LB felt, recorded in the records. Even in that space. A space in which he was brutalised and had pretty much everything he recognised stripped from him. A space in which he was told to attend stupid fucking tea and cake groups because he’d be allowed home earlier. A space in which he was given bonjela to put on his tongue by a careless and arrogant psychiatrist who denied he was having seizure activity.

A space in which a combination of Sloven incompetence, arrogance and obsessive focus on corporate identity and reputation (rather than basic patient care) together with disinterest from local commissioners, a wider inertia and disregard within health and social care, led to a vacuum in which he (like so many others) died.

A space now documented and evidenced at length. With no accountability. I’m not ‘inspirational’. I’m just doing what I always did for him, until I took my eye off the ball and handed the baton over to a (known to be failing) organisation. And I will continue to do it until there is justice. And accountability. Along with the other #JusticeforLB campaigners.

Sense and reason, at last

Posted on May 2, 2016 by sarasiobhan

After nearly three years of atrocious responses from Sloven to what happened to LB, this document arrived anonymously in the Justice shed earlier. An emergency motion presented at the governors meeting on April 26th. Apparently, from what we can glean from Michael Buchanan’s tweets and other sources, some of the governors were taken aback by the never before seen candour and transparency they were confronted with, without warning.

Petter, then chair, decided that the motion would be held back to an extraordinary meeting to be held within 7-10 days of the CQC report being published. I suppose to allow certain people the space to recover their shock and horror that, for once, their cosy slumbering and collusion with the board was being challenged.

I can’t describe what it feels like to read these words. Such a careful, reflexive, comprehensive and sensible engagement with the catalogue of failings since Mike Holder’s report in 2012.

I’m not sure I’d add anything other than, good on you, Mark Aspinall and the other governors who expressed support for it. What a refreshing contrast to the simply offensive letter we were sent on Thursday. And here’s looking forward to the extraordinary meeting in the next week or so.

-REBbBU_

H_jywKsp

The confidential confidentiality agreement

Posted on May 1, 2016 by sarasiobhan

confid

Back in October 2013, Fran was going to be the family advocate on the Sloven investigation into LB’s death. This descended into farce almost immediately as Fran was banned from being involved because of some trumped up nonsense around Oxfordshire Family Support Network. And then unbanned. Once back, Fran’s involvement only spread to one meeting before Verita were commissioned to do an external investigation.

At the meeting with two Sloven employees (one of whom wrote the leaked quality and safety review nearly a year before LB died; the report which Verita, NHS England and NHS Improvement are now arguing was disclosed (my arse)), Fran was given a lifelong confidentiality agreement to sign. She took a hard copy away to get it looked over, slightly bemused as it had bits crossed out and handwritten amendments.

She was surprised to receive several missed calls from the clinical director the next day (on her home phone and mobile) desperate to get hold of her and two messages. This is the first message (early evening). It was followed by a second message first thing the next morning asking her to get in touch. And more missed calls across the morning.

The life long confidentiality agreement itself was now confidential and not to be shared with anyone (not even a legal representative). Complete and utter Sloven nonsense. Typical bullying and bombastic approach. Terrible, terrible interaction with a family friend/member of the public. No whiff of care, concern or sensitivity around the fact that a young man drowned in their care. Just a dehumanising ‘mum and her solicitor’ and agitation.

What a sign of what lay ahead.

ps. Fran’s son, James, still uses Sloven services. Her willingness to publicly share this message and story is a testament to her not being cowed by bullying services who too often hold families over a barrel of fear. She said to me an age ago that she had been a whistleblower as a nurse in her early twenties. ‘Before ‘whistleblowers’ existed.’ She just called out poor practice. I think she’s right. This is the only way change will happen.

The governors response…

Posted on May 1, 2016 by sarasiobhan

Regular readers will know I spent ages writing a letter to the Sloven governors at the beginning of the year outlining the boards (barbaric? inhumane?) treatment of us since LB’s death. It was a deeply distressing task which took hours. I didn’t cover every bit of action (or non action) because it would have been unreadable. The letter can be read in full here.

It ended with this paragraph:

Only one governor, Mark Aspinall, demonstrated any interest in responding properly to my letter, as I chased up an answer every few weeks for four months. Apparently it was taking a long time to go through all the points I raised and getting the governors to agree to a reply. Last week we heard from Jim Mackey that NHS Improvement had followed up the non response with the trust and had requested a copy of the reply too.

I received this letter the next day.

[Before reading it, you should probably make sure there is nothing breakable within reaching distance. In all seriousness.]

Please hurry up someone and do something with this totally toxic, festering bunch of self satisfied and equally stupid, pointless people. I now have rage feelings in parts of my body I didn’t know existed before. LB died [he died???] and you – the board and now the governors – have treated us with contempt, disrespect and much worse.

How is this remotely acceptable? And how do any of you, and I mean all of you, possibly sleep at night?

Media melange and a missing CEO

Posted on April 29, 2016 by sarasiobhan

24 hours. The Today programme, BBC Five Live, BBC Breakfast News, Channel 5 and ITV News, Community Care and Oxford Mail. No words (other than appreciation for thoughtful and engaged interaction from all, and some photo captions).

Oh. And no sign of Katrina Percy.