Been thinking quite a bit about this whole post-Winterbourne stuff (as usual). This is going to be a bit disjointed but I hope I make some sense by the end of it. To start, have a read of Chris Hatton’s post about Winterbourne View and institutional ‘care’ in the UK. I’m sure I’ve linked to this before but it deserves to be linked here, there and everywhere.

Quoting from this;

“Jim Mansell and a very talented team in Kent demonstrated in the 1980s that it was possible for people with learning disabilities and the types of challenges often used by specialist residential services to justify their existence to live fulfilling lives in the community, with the right, individualised support (see the revised Mansell report; 2007).

Jim was a remarkable man and, as a colleague who worked closely with him wrote to me recently, he’d be turning in his grave if he could see what was happening.  At least 3000 people still incarcerated in assessment and treatment units in the UK at the last (vague) count. So much research into provision for learning disabled people in the UK and no real change in many ways.

Then a friend messaged me after meeting her son’s adult social care manager;

We had a visit from the social worker to talk through an endless form about T and adult social care. I really struggle with it as I object to the way that she phrases almost everything! Always T’s problem – not crap communication etc on the part of others. Eventually we talked about independent living and I cried as I do every time it is mentioned. And I told her what had happened to LB and why I worry so much about putting T in someone else’s care. She was shocked but it wasn’t until I listed the lack of a battery in the defibrillator that she exhaled in amazement. No patient interaction, face down restraint, but the true shocker was the missing battery? Kind of explains why I cry, doesn’t it?

Many of the ‘post Winterbourne’ discussions tend to start with the caveat; “Er, horrific abuse uncovered at Winterbourne but this level of abuse isn’t apparent elsewhere… We’ve just uncovered a lot of non-compliant units”. It’s peculiar that ‘full on, nasty, physical, caught on (Panorama) film’ type abuse is given some sort of special status. As are missing batteries or out of date oxygen tanks.  The lack of patient/staff interaction, careless use of face down restraint and sustained neglect over months, or years, of people isolated from their families and their local communities is treated as somehow less important.

While I understand that the visual images captured at Winterbourne View are completely shocking and harrowing, surely people (particularly those who work in health and social care, and particularly those who have anything to do with these places) can understand that leading an incarcerated life without engagement, interaction, interest, activity or aspiration, behind locked doors, often a long way from home, is truly fucking shite.

Given that little has actually changed since the Panorama film and the bucket of money chucked at making changes ‘post Winterbourne’, I wonder what has to happen to lead to real change.

Here are a few (outlandish but hey, what is there to lose?) suggestions:

• A Big Brother type set up in the currently empty STATT with a selection of key health and social care figures living the life of the typical inpatient for three weeks. [Channel 4 would snap it up. Happy to come up with some names if necessary.]
• A mockumentary where an investigation is underway at a STATT like unit where household pets/animals are found locked in and deprived of therapeutic environment.  The missing battery is less relevant here. [There would be a stampede of ‘celebrities’ queuing to host, comment on and campaign against the filming of any further episodes. Media attention guaranteed. Ricky Gervais at the front of the queue without a sniff of irony.]
• A diverse group of secondary school aged kids go to work in an Assessment and Treatment Centre for a couple of week, overseen by a panel of learning disabled people, carers, relevant third sector organisations and interested ‘lay’ people. Tasked, through open discussions, unconstrained engagement and spontaneity, to come up with a set of suggestions and alternatives to inpatient life. Learning disability life and imaginaries through a set of fresh eyes.

Given our experience of the young people/children who have hung out with (or come into contact with) LB or his classmates, over the years, who have sucked up difference, unusualness, quirky and sometimes ‘in your face behaviour’, with little comment, slight adjustment and an embracement/incorporation that needs no mention or recognition, I can’t help thinking we’re looking at the wrong places for answers.

I dunno.

LB died six months ago today [yesterday..] I’m not sure I could tell you if it was six months, six weeks or six minutes very accurately. I hold onto fragments offered by others or time bouncing in and out of consciousness depending on what I’m doing. I’ve kind of thought in terms of Thursdays really. Becoming aware around 9ish to 11am wherever I am most Thursdays of the significance of this ‘time’. Often with a backdrop of a siren or two courtesy of living so close to the JR hospital.

But today is the six month mark. And, oddly, it’s 12 months to the day since LB had his first seizure for more than 18 months. The seizure was caused (almost definitely) by new medication for increased anxiety.

The story (is it a story?) I tell on this blog is largely about mothering. This isn’t to detract from all the other stories that could be told. I’m just telling it as his mum. That day, 12 months ago, I was terrified of SUDEP. This fear led to Rich, Tom and I sleeping in LB’s room. A kind of family solidarity event. It was one of those nights that lasted forever (which I’d conjure back in an instant if I could) and ended, in the early hours, with LB and I in the room. He was oblivious and paid no attention to this invasion of his sleeping space. Probably still basking in the attention of the paramedics.

The following weeks followed a pattern of increased anxiety, unpredictable behaviour, despair, tension and no support until we admitted him to STATT on March 19th.

The rest of the story will be told in time. It’s a story on hold for now. We’ve learned a new version of it in the last few months. A version that makes me weep, howl and almost want to disappear. A story that no mother should ever have to confront. Or endure. But a story under wraps for now.

I’ll keep recording my thoughts and reflections about the broader process for the time being. I’ll continue to analyse any inappropriate documentation/letters and minutes I come across (or get sent) [Appropriate ones will be acknowledged – and more than welcomed – too]. And basically continue to be a right old pain in the arse.

These actions don’t much help much. They highlight how crap and limited system and processes are. And shine some light on the culture that exists around learning disability provision. They generate a level of transparency that wouldn’t happen otherwise. Who knows, maybe they shake/provoke different engagement for some of those people involved? Possibly not.

They are displacement actions for me. The extent of the pain, anguish and rage I feel about LB’s death is beyond words or imagination. A pain that haunts every part of my being. But a mothering instinct kicks in with bells on when your child dies in such circumstances. When this child was always at odds with expected ways of being and completely unarmed to protect himself, particularly when he notionally reached ‘adulthood’. An unassailable rage.

I have to say (and I know Rich agrees) that the thing that has kept me from some sort of breakdown (so far) has been the support and actions of people we know – family, friends, colleagues and others (far ranging others). I’ve said this before, probably over and over again but the countless ways people have responded to what happened has been remarkable. And faultless. And again, a learning point for me (being slightly ironic here because I know I will feel like punting the ‘learning points’ that emerge from this process into the river like Baxter) when someone dies unexpectedly is don’t shy away or avoid, instead approach, say, write, email, text, tweet, leave a comment or whatever. Simply acknowledge in some way. However small.

Here’s to the countless people who clearly already knew this.

The NHS is a right old hot potato at the moment. Current debates remind me of the overly rehearsed tensions between medical/social models of disability. How can the challenges associated with having a particular impairment, or long term condition, be recognised without feeding perceptions of disability as something tragic? Fears that the NHS is under threat of privatisation seem to be stifling any sensible, informed criticism of the way it operates.

Our experience of Southern Health, the NHS provider running the assessment and treatment unit LB died at, has been appalling (not just for the obvious reason but also because of the way they’ve handled the situation since LB died). We’re baffled by this treatment and the silence surrounding it. I don’t know how many posts I’ve written detailing crap stuff after crap stuff, ending with the plea ‘Is someone going to do anything?’ I don’t know who I mean by ‘someone’, but not sure it’s my responsibility to do so. These are publicly funded organisations, for fuck’s sake.

Tumbleweed continues to gather around my pleas, despite discovering that more and more organisations were implicated in what happened. Our MP, lovely guy but completely ineffectual, sent me a letter from the Director of Community and Social Services the other day. A load of flannel; working closely with Southern Health, etc etc. Bland, meaningless drivel. I despise these letters now.

Then, one of the army of enraged ‘lay’ people forwarded me an email exchange with one of the Oxfordshire local authority commissioners. Yes, a commissioner. Let’s call him/her Commissioner X. Read this, weep, and ask yourselves if there is a serious issue with the NHS and the structure of health and social care services in this country.

“It is evident however that the quality of the service at STATT, which had been person centred at the point of transfer to Southern Health in December 2012, deteriorated significantly over the period of time in question and I am very sorry that what was held to be an example of good practice had such a poor report from CQC. I’m afraid we have to hold Southern Health responsible for that deterioration although we don’t say so publicly as we don’t want to knock confidence in such a large provider.”

Commissioner X, our son died in that dump.  And I really don’t give a rancid rat’s arsehole if their confidence is dented. It needs denting. Why wouldn’t you openly challenge this? It’s a matter of public interest. And the provision couldn’t have realistically deteriorated to that extent in that time. Nonsense. I’m shocked and ashamed that Southern Health’s dirty little business is being protected by commissioners and the local authority. What a set of deceitful, underhand, shoddy and stupid practices. Lacking in any decency.

I suppose the tumbleweed makes a bit more sense now. I’m giving up asking for anyone to do something now. You’re all a bunch of self serving sheep.

Bastards.

Still being nagged to post funny stuff and failing. I’ve drawn a cartoon strip type effort today.  Drawing this caused some laughter this afternoon so it possibly counts as funny. It took bloody hours as I’m obviously not a cartoonist (if a cartoonist wants to run with it, please crack on and share the spoils) so please just suck it up. It was kind of fun to do.

And, to add a note of authenticity/gravity, I photographed the drawings on the bag of LB’s clothes we’ve sorted out to give to school. I didn’t do this deliberately. Just functionally. But it’s a level of detail that keeps it real. Charlie’s Angels (Sue) were unable to think about taking this bag last time they came round.

Oh, and please read it carefully. It is completely shocking.

A new year. At last. Although my lovely mate Gail, whose husband died suddenly a few weeks before LB, captured the whole new year conundrum brilliantly yesterday. I knew I’d be in pieces as 2013 drew to a close. Relieved to be shifting on to a new (and hopefully less harrowing) one but also beyond devastated to start the new year without LB. With the kids warned and low key (no) plans in place, I wallowed in home movies and old photos yesterday afternoon. Sorting through disc after disc of LB’s school photos. By 10pm I was in bed, listening to music, Sooty tears in full flow. I missed the midnight celebrations. Instead I wept. And wept. And wept a shedload more.

This morning I woke feeling strangely calm. Kind of peaceful. A bit odd but good. Maybe because I’d been able to park all the shite around what had happened – the rage, the intense disbelief and incomprehension, the horrible, horrible details/actions – and just think about LB.

Maybe because 2013 was finally over.

I know this reprieve from the pain, the loss and the process that accompanies something like this, will be short-lived. The (internally commissioned) external NHS investigation will be finished in the next couple of weeks. Another battering before inquest plans are made. But for now here’s to a patch of peace. And a new year. Hopefully a better one.

And here’s a blast of LB’s later school experience. Love him.

I know, I know. It’s that jolly season. But I’m continuing my miserable series of deconstructing health and social care documents in true bah humbug fashion. Regardless. Once you start to read these papers carefully you realise what a sham a lot of this documentation is. Here’s Oxfordshire’s Winterbourne View stocktake summary. This was written before LB died. And it’s complete billy bullshit.

For example;

All those whose services are commissioned by Oxfordshire have received reviews and the Learning Disability Team is actively involved with them and their families to ensure they are well supported, they are receiving active treatment, and plans are made together for when they are ready for discharge to the community.

I’m always a bit suspicious when the same adjective turns up in the same paragraph in ‘official’ documents. ‘Active’ pops up twice in the same sentence here and, funnily enough, it’s the last word I’d associate with the Oxfordshire Learning Disability Team. Sloth-like maybe. Or slow loris even.  Active? Nah. The sad and sorry story of our experience with this team will emerge eventually but believe me, it wasn’t a story of activity. Of any sort.

Apparently a ‘register of all admissions and discharges is maintained and a monthly meeting reviews progress.‘ Seriously? How do the experiences of the patients in STATT fit with these claims? LB wasn’t the only (local) dude languishing there for months. And, a slightly off topic point but one that needs shouting from the rooftops; if the Learning Disability Team were actively involved with the patients in STATT, how could they not know of the appalling level of provision there?

[Sorry. I need a moment to scrape my brain off the floor again. It repeatedly implodes whenever I think about this… A mix of intense pain/horror/disbelief/incredulity and rage and a screaming HOW/WHY????…………………………….

Thank you.]

If Oxfordshire are turning out this shite, how many other areas are spinning their ‘post Winterbourne accounts’? Dressing up their actions? Does anyone check the accuracy of these reports? The difference between what is written and what actually happens?

This stocktake is part of the Winterbourne View Joint Improvement Programme. Something I have little confidence in. (The ‘little’ bit I have relates to Bill Mumford taking over the gig in the last few weeks as he seems a sensible, grounded guy). We almost need a grassroots movement of relevant families googling their local ‘Winterbourne Stocktake’ summaries and checking if they bear any resemblance to their/their dude’s experience*.

The trouble is, we didn’t know these reports were available online before LB died. We were too busy trying (and failing) to get appropriate support for him. We didn’t have the time or energy to do this. Even if we had known, we’d have worried that any troublesome actions on our part could have potential consequences for LB.

Wrong. So completely wrong. On so many different levels.

Take it away Mike…

*I think the summaries are available within (buried deep) the minutes/agenda/paperwork for the Health and Wellbeing Board for each area. The bare bones of each summary is available here.

Rosie asked for a funny post the other day. Like in the old days. When this blog was about fun, nonsense, chaos and life. Dug deep, couldn’t find funny words but some recent photos.  Capturing colour and light. The sea at Branscombe this week. Spectacular. Beautiful stitching by a lovely friend (better not name her as I haven’t asked permish) started on the train on the way to LB’s funeral. And a section of a family photo collage in our kitchen. Complete with Chunky Stan, the Simpsons, Spongebob Square Pants and a cheeky appearance by Martin Keown.

This is for you, Rosiebell.

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.