I realise it’s getting close to Christmas so will keep this reflection about the latest Southern Health (SH) report short and to the point. [Er, I badly fail on this. Sorry].

A Summary Action Plan by SH in response to the recent CQC inspection is available online. Not sure where exactly online, but it turns up in a search for SH/CQC. The document screams (more) questions for a whole cast of people/organisations and it would be fab if someone, some organisation, would wade in and answer something. It’s getting pretty dull continually flagging this shite up.

Context; the CQC inspection raised terrible issues around patient staff engagement (pretty much none) in the unit LB died in. A unit in which patients lived for months or longer. A lack of therapeutic environment, patients felt fearful/unprotected. A lack of anything really. People locked in and locked up. Ignored. Staff hidden away in an office, filling in forms/audits. Reports of faulty equipment (falsely signed as fully functioning) and issues around dangerous and dirty spaces. SH were referred to the Oxfordshire Safeguarding Board.

Let’s just look at the first couple of sections of this “summary action plan” [which apparently was comprehensive enough for the Oxfordshire Safeguarding Board to no longer need to meet with SH….]

Respecting and involving people who use services. When you’re pulled up for not respecting and involving patients, it isn’t really about care plans (“signage or leaflets”). It’s about engagement. It’s about humanity. It’s about chatting with people, listening to them and understanding them. Learning or being trained in how to “share care plans” is missing the point. Big time.

There is then talk about involving patients in “business planning workshops”? Eh? What business? Patients lives? Does anyone know what business? Or is this a typo?

Care and welfare of people who use services. Again, this bounces straight back to “care plans”. Horrible, bureaucratic bits of paper that dictate what patients can expect. There’s a sweeping statement that clumsily attempts to mop up various layers of failure captured by the CQC report (religious and cultural needs, families and carers and easy read versions). They might well have written: ‘Er, everything we did wrong, we will now do right. Honest.’ Completely meaningless.

This next sentence is breathtakingly astonishing.

We are reviewing the models of nursing care provided across the LD Division. Models of nursing are routinely used and we will continue to work with staff to ensure they are clear in relation to the ones being used.  

Hilarious really. What does this mean? Other than people at SH don’t appear to know what a model of nursing is? I wouldn’t know a model of nursing if it bopped me on the head. But it ain’t my business.  An NHS Trust clearly should.

And so it goes on. Training, training, more policies, more training, more policies, everything is ok now and staff are now being trained to, er, be staff like. Words vomited on a page with no sniff of patients anywhere.

And then it turns out the unit has been closed down. (News that made me cry almost as much as that first morning. We left LB in an NHS setting so poor it was subsequently closed… I can’t get my head around this).

So, where are we at now? Dunno who closed it. Doubt it was SH. They’d righted all those wrongs in about ten minutes. We do know the summary action plan can be binned. Stand down elite, troubleshooting SH team (picture the Hair Bear Bunch). We know that Oxon Safeguarding Board, local authority and Clinical Commissioning Group have serious questions to answer about having (and knowing about) this hellhole under their watch. And SH continues to demonstrate no understanding whatsoever of the provision of health/care for learning disabled people.

Bunch of muppets.

Received an update this morning from our lovely solicitor. I opened the first attachment, read the opening lines and felt the excruciatingly intense pain that comes with reading the incomprehensible. The enraging. The beyond saddening. Emotions kind of familiar now but still (thankfully?) alien. So beyond any understanding. So beyond any rules, norms, expectations of what is. And what should be. Everything we’ve been brought up to believe. To understand. Smashed beyond recognition.

I closed the document. Went for a work lunch (a work lunch, not a lunch jolly). Got back to the office. Did some more work. Felt intensely distracted. Re-opened the email/attachments and read more. Felt sick. Read some more. Did some more work. Printed off the documents. Failed to print them all. Did some more work. Slowly. Laboriously. Eventually gave up, left work and caught the bus home. [Having a flexible workplace is an essential component to even beginning to deal with this horror. Rich and I completely appreciate this on a daily basis].

I dug out the documents and started to read some more. The young woman next to me was on her phone. Her one way conversation punctuated the words I was trying (not to) focus on. The contrast between her Christmas arrangements – a bumper pack of Trill sprinkled over a cast of cheerful and feisty family members – and what LB experienced in the unit was impossible to reconcile. I bundled the papers back in my bag.

All the while, the new details bouncing around my brain. A refreshed form of torture. Almost impossible to engage with. But at the same time impossible to avoid. Any mother’s worse nightmare.

Rich met me off the bus and we went to the supermarket. I filled him in briefly while we shopped. He cried in the freezer aisle. Among the Christmas bustle. Among the fish fingers, oven chips and Birds Eye peas.

I can’t write publicly about these latest details. As I can’t write about the details we already knew. I can write about them though. And that’s what I’m doing.

I want to scream them from the rooftops. I want to shake the necks of the various people/organisations who were complicit in what happened to LB. And there’s quite a list.

How could you? How could you?

And I feel horror and despair that so many dudes like LB (though not necessarily quite as hilarious/artistic/eccentric and downright fucking brilliant as him, of course, cough cough) are more than likely experiencing such hideous treatment and non or anti-care.

What a fucking mess.

Nearly six months on. Grief check: yep. As painful. A mix of agony, numbness, horror, deep, deep sadness and rage. I miss him. A yawning, aching miss. He was such a colourful dude who filled our lives with his eccentricity, constant chatter and astute, cutting commentary on life. He was one of my cubs.

I’m impressed with the way in which most people (pretty much everyone) have dealt with what’s happened. Embarrassment and awkwardness has been non-existent. I’ve only had one person pretend nothing has happened (married to a surgeon). I don’t think people have avoided us (or if they have, they’ve done it seamlessly). And there’s been a cool balance of allowing space to talk or not to talk. (And to put up with ragey rant moments.) A patience, kindness and respect (never been a big respect person but it’s growing on me) I appreciate.

I was thinking about things on the bus home from work on Friday. Weekends are no different to weekdays anymore. The grief cloak standardises life. Largely ironing out difference between good stuff and the rubbish stuff. Everything is kind of the same. An odd, sad life. Enjoyment pockets with a colourless hinterland. (And before the kids start shrieking at me to get a life, I know (hope) this will change. Just trying to capture the moment and all that…)

Christmas is approaching. A whole newly defined space to manage, tip toe around, avoid as much as possible. A sledgehammer of normative behaviours and actions. Chuck into the mix a bucketful of memories. On a yearly basis. Very, very tough. The other day, at work, I managed to sneak an hours kip on the sofa area in our open plan office. Not many people were around and I was tucked away slightly. I only meant to grab a quick five minutes but the sound of keyboards tapping across a vast space and distant talk was strangely relaxing. I was out like a light. Bright lights and all.

I’m trying to reframe Christmas in the same way. We ain’t got the stresses and work associated with organising typical Christmas celebrations. Maybe this can be reframed as a different sort of white noise. Just gotta sort out the emotional dimension and I could be onto something.

Grief world.

I’ve revised the (now snapshot) Timeline of Shame. Only a couple of weeks after I posted the original. It needs to be viewed in full screen. And needs to be viewed really.  To put things in context. The aim of this is to illustrate how this isn’t just about what happened to the 48 people who were patients at Winterbourne View. And it isn’t just about LB. It’s about how learning disabled people are treated like shite in this country. Particularly those incarcerated in these holding pens of hell. [Thanks to Sam Sly, Rich Watts, Jo Pyrah and Chris Hatton* for reminding me of the broader context; Ely Hospital 1967, Longacre 1994, Budock 2006… known about cases.]

A census of learning disabled people living in Assessment and Treatment units was published yesterday. This contained shocking/horrifying statistics. It took a snapshot on September 30 2013. Over two years after the abuse at Winterbourne View. Nearly a year after the government planned a “dramatic reduction” in the number of people in these units.

The Department of Health also published  Winterbourne View: One Year On. I’ve only glanced through this report but, other than put into place a few processes [Have ‘Winterbourne Concordat’ jokes started circulating yet? How long does it take to put a process in place…?], nothing really has happened. All talk and no action. And there’s a naive emphasis on Winterbourne View and the people who lived there. As if they’re the only people who experienced abuse in this setting.

Abuse covers a range of practices and it’s clear from the CQC report of STATT that neglect and institutional abuse was occurring there. I don’t suppose these two units are the only two assessment and treatment units in which vile practice is operating**. They just happened to have been uncovered through a) a whistleblower and responsive actions of Panorama journalists, and b) the unexpected death in harrowing circumstances of an otherwise fit and healthy young man.

Norman Lamb, who seems genuinely committed to getting people out of these units, is forced to try and re-mobilise the outrage, revulsion and sadness people felt when Panorama was aired in his foreword to the report. It’s clear this wasn’t enough to sustain an effective commitment to change.

It isn’t just about the people in these units, of course, but the pain and distress their families and carers experience. You can hear some examples of this on You and Yours (around 45 minutes in). It’s a brutalising and dehumanising system.

And it’s not just a timeline of shame (national shame). It’s a timeline of consistent inhumanity, weakness, stupidity or deliberate dis-engagement, and inaction. The people incarcerated in these units are, arguably, among the most vulnerable in society. And should get the most protection.

No sniff of that. Forty six years after the Ely Hospital scandal.

*@SamSly2 @rich_w @jopyrah @CHRISHATTONCEDR

**A good friend’s son, James, was abused by staff in an out of county unit when he was 16.

I was getting on with responding to reviewers comments for a funding application earlier when the postie arrived. Bringing a letter from the (actual as opposed to acting) Chief Exec of Southern Health.  This included an invitation to meet with her to discuss what’s happened. Ok. We’ll think about this.

The rest of the letter was a lesson in how not to write an ‘apology’ letter. There’s a PhD to be done in a discourse analysis of the content of NHS fake apology letters if it hasn’t been done already.

Here’s a whizzle through it, with key tips in bold…

An obvious starting point and easy win is to (1) get the person’s name right. (For the record, I ain’t, and never have been, ‘Mrs Ryan’).

(2) ditch the fake apologies. Today’s ‘apology’ (letterofcondolence/version3/additionaladjectives) is a variation on the Acting Chief’s offering I quoted in Being open and saying sorry.

“May I begin this letter by offering my personal and sincere condolences on the death of your son, LB. I acknowledge this must be an incredibly sad and difficult time for you and your family.”

In addition to the crapness of the meaningless (non) apology, I feel a bit uncomfortable having someone ‘acknowledge’ what a sad and difficult time we’re having in this way. Particularly when the organisation they lead has actively contributed to our sadness and distress. (3) Ditch the platitudes. 

But then there’s quite a lot to feel uncomfortable about in this letter. Take the following section;

“I am aware my colleagues have endeavoured  to assure you that the investigation will be thorough and transparent, and the findings will be openly shared with you [cue a blast of Dambuster music]. I understand you remain reticent (?) about whether this will in fact materialise [cue a blast of Paranoid Android].”

We’re positioned as a force of negativity and the staff, heroic in their battle to do good. Breathtaking spin. Given the recent surprise expressed by the Chief Exec over the findings of the CQC inspection of the unit, you’d think she’d task herself with better information gathering. (4) Get your facts right.  It’s evident that the collective ‘endeavour’ of our solicitor, family, friends, colleagues and wider social media support played a significant part in the appointment of an external reviewer. (5) Ditch the spin. And since this reviewer was appointed, we’ve had no concerns whatsoever about the materialisation of a thorough and transparent investigation. Disingenuous to suggest otherwise.

And finally (and in no particular order) it’s probably best to remain mindful of the context and recipient when writing these apology letters. You don’t need to state you’ve “returned to the Trust from a period of maternity leave” in a letter to a bereaved mother (6) avoid insensitivity. I know. Small things that are kind of obvious but clearly need highlighting.

Now I need to get back to the reviewers comments. Later than I planned.

The things we now think about and do. That we never thought about before. Have to say, I was not a cemetery type woman. The handful of funerals I’d been to were crematorium jobs. Fleeting, discrete events. Very sad, very strange, slightly awkward, out of place and unanchored. That’s all changed.

Got a grave to tend now. A woodland one so minimum work really. We had a few months of watering. And some autumn planting for a spring display of wildflowers, organised by my mum and dad. Now it’s all about fallen leaves and changing colours.

The big news in cemetery world (I suspect it’s a fairly low key news space generally) is LB has a tree. The cemetery staff planted it so carefully we wondered if it had been there all along. We’d just not noticed it. They also carefully replaced his collection of lorries,buses and Eddie Stobart memorabilia around it. You’re not really supposed to have stuff in this section of the cemetery but I think the cemetery staff pretend not to notice. He was only 18.

LB is in good company. J.R. Tolkien is buried a hundred metres away, drawing a steady set of visitors from around the world. Co-founder of Healthtalkonline, Ann McPherson is close by. And local author, and husband of a friend/colleague, Tim Griggs, sadly joined LB under the trees only a few weeks ago.

Odd, but weirdly comforting, space.

I woke very early this morning. As I always do now. And grazing the internet (amongst Twitter and Candycrush) I came across the NHS Being Open policy. This was a revelation. A thoughtful (readable) policy for when things go wrong. Underpinned by insight and understanding. The benefits of Being open are laid out. These include, for the organisation, a reputation of respect and trust. For the professional, confidence in communicating effectively. For the patient, a reduction in the trauma felt.

There are 10 principles of Being open, the first three of which are’ acknowledgement’, ‘truthfulness, timeliness and clarity of communication’ and ‘apology’. Let’s take these babies one at a time.

Acknowledgement

When LB died, Rich was called by the A&E department and told very clearly to make his way to hospital straightaway, without passing go. The unit doctor who called me failed on this gig, saying at one point LB’s key nurse was with him and he would call me if there was any change. It doesn’t take a medical genius to know that there was going to be no change.  

Timeliness and clarity of communication

I don’t need to rehash the complete bollocks the Trust made of this. It’s detailed on these pages. A sample lowlight can be found here. As for timeliness, the internal investigation properly started on November 6th when an independent organisation was appointed to lead it. Attempts to get an appropriate chair had failed up to this point. This was 125 days after LB died. The Trust said they had to wait for the police investigation to finish (around day 82). A position which apparently prevented them getting everything (anything?) organised, ready to start.

Apology

Eh? Wha? Apo…what?

Let’s have a look at what Being open says about apology…

Pretty straightforward really. Kind of what you’d do in any situation when something catastrophic has happened on your watch.

The morning LB died, the consultant (exceptional guy) said three staff from the unit were in A&E and wanted to see us. He’d (already) told them it wasn’t appropriate. We were huddled in the relatives room in utter shock. Around twelve hours earlier Rich had been watching Andy Murray reach the semi-finals of Wimbledon with LB. In a hospital setting. Now he was dead. We didn’t want to see the unit staff.

A week later I received a letter from the Acting Chief Executive of the Trust.

Dear Sara,

I was deeply saddened and sorry to hear of the death of your son, LB on Thursday 4th July. I want to express my sincere condolences, both personally and on behalf of the organisation. My thoughts are with you and your family at this difficult time. I also wanted to offer any support you may feel you need at this time.

This isn’t a meaningful apology. Well it’s not an apology at all. A thousand people have said similar to us since LB died.

They clearly ain’t rocking the Being open policy in the Trust. Perhaps one of the learning points to come out of this terrible tale. Eh? What’s that? The process after LB died maybe isn’t covered in the investigation... Oh. Of course not. Another job for PALS then? Howl. 

I can’t speak for the Trust or the staff as to the implications of this most definitely not Being open approach.

For us, the trauma has been made so much worse. As always, stay classy Southern Health.

Today we went to the farm where LB and his classmates worked every Monday and Friday. For a celebration. LB loved working at the farm. He loved being outdoors and was very much an attention to detail/grafter type dude – an ideal combination in that environment. He also loved the homemade pasty and hot chocolate at the end.

Sue and Tina, two of the Charlie’s Angels, had been planning this celebration for weeks. We knew they’d organised a bench in LB’s memory but had no idea they’d organised such a fab do. Meticulous planning, thoughtfulness and love for LB shone through.

And the sun shone too.

The beautiful bench was in the small orchard where LB often worked. A bus plaque had been made by Wheatley Park school and a lovely collection of photos of LB working at the farm were on display. Including a picture of him gardening there three days before he died (pic below the plaque). His classmates had all drawn pictures for him (several with buses) that were displayed along the fence. Tina said a few words and read a message from a classmate who couldn’t be there. He said how he missed LB and how quiet it was without him, love him. Then we released brightly coloured balloons with tiny pictures of LB (eating a pasty at the farm) attached to the strings. Moving and lovely.

We walked back to the farm and had pasties and hot chocolate in the sunshine. They’d even arranged vegetarian pasties.

LB would have loved it. And I’m beginning to think Charlie’s Angels should take over running the country.

I’ve cut the heads off the bench photo but will include them if people are happy to be shown. 

I thought it was about time we reduced time frames. The press release by the ‘Post’ cough cough Winterbourne concordat was two years on. Too long. I also feel a bit of alarm about any body/group with such a grand title. A hasty response/performance to the horrific abuse uncovered by the (in my eyes) remarkable journalists. Without tools, thought or a clear plan about what to actually do. A concordat without backbone or bite. More concustard. And the press release said nothing.

What’s happened since Panorama aired back in May 2011? Well the unit shut. Good but doesn’t resolve the issue of the other 3000 or so learning disabled people in other units. Some people went to prison. Good. But I don’t think any managers/healthcare professionals were punished (or even lost their jobs – brain melt). And really, if this unit had been effectively managed/commissioned, abuse wouldn’t have happened. The patients are now scattered, many in other unsatisfactory, or unknown, settings.

There was some solid contextual research by the Improving Health and Lives Learning Disabilities Observatory. And meetings. A lot of talk, huff and puff. Mencap, clearly frustrated at the inaction, are focusing their efforts on the 40 or so patients who were in Winterbourne View. Understandable focus in a way. But possibly a bit simplistic. Winterbourne wasn’t some random, outlying occurrence. The CQC report of the Short Term Assessment and Treatment Unit, Slade House, published a week ago (yep, lets keep this baby moving) identified potential abuse happening in full view of the inspection team. Institutional abuse and neglect.

And the screaming question that will haunt me forever (one of several); if it happened in front of the inspectors what was happening when they weren’t around?

There are so many layers of wrongness here that it’s hard to keep tabs on them all. Details like the missing battery in the defibrillator. How you can remove a battery from such a piece of equipment and not replace it is beyond comprehension. How you can then tick a form to say it’s been checked is the point at which I’m almost ready to chuck the towel in. Not a single interaction between the nurse and person they were looking after in a 35 minute observation?? And this wasn’t an understaffed ward. This was a cushy number with 4/5 patients and a minimum of 4 staff on duty 24 hours a day. Backed up by an army of psychiatrists, doctors, OTs, essential lifestyle planners and so on. What were they all doing? The unit was overstaffed, cost around £3,500 per week per patient and provided care that was at pond feeder level.

But no jobs will be lost said the awkwardly nervous Southern Health representative on the news. What sort of gig do the NHS/social care run? A catalogue of beyond damning, and ultimately catastrophic, failure. With no apparent reflection on what it is like to experience living in such hell holes.

I have so many questions but I’ll stick to a few here. Just to keep you updated, the CEO of Southern Health hasn’t responded to my letter yet. Bit tardy. But I’m not sure that these questions relate only to Southern Health.

• Who is going to do something about how such appalling provision could exist? And I don’t mean what are we going to learn from this failure. We went through the whole hand wringing, serious case review, Concordat development and lessons learned bullshit with Winterbourne View.
• Who is going to hold the various agencies that were complicit in what was happening at STATT to account? Southern Health, Oxfordshire Clinical Commissioning Group, Oxfordshire County Council. All aware. All breezing over obvious failures because clearly these people aren’t important. Not human enough to bother about. (Note to all of the above; filing learning disabled people away as other is clearly a recipe for disaster.)
• And when are we going to say enough? LB died. He died. I know he’s our son, our dude. But with a different throw of the dice it could have been your child. Your brother, grandchild, nephew, niece. Your friend, your pupil, your dude. When are we going to collectively say “Enough. Things must change”? With backbone and bite.