At what cost and who really cares?

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Extract from a special Inquiry.

‘We now report, with sadness, our findings and, in a spirit of hopefulness, make our recommendations […] We believe the public, as a matter of right, as well as by reason of the fact that it pays for the NHS, is entitled to sound and reliable standards from those employed to administer it’. 

Principal conclusions; the failure of staff to cooperate (largely because of the actions of the consultant psychiatrist who, through arrogance, withdrew from the original inquiry), the failure of duty by the area local authority and lack of effective monitoring by the regional health authority. A lack of implementing current government policy. No evidence (pretty much) of cruelty or ill-treatment of patients but extremely low standards of nursing care and accompanying poor quality of life of patients. A lack of effective nursing leadership.

A few years earlier, a member of staff flagged up that nursing staff ‘had lost their way’. A report pretty much ignored. Eighteen months later an officer visited the hospital and was disturbed by what she saw. Her views were ignored and no substantial improvement effected. Aside from some excellent nurses, there was excessive and improper use of seclusion.

The hospital buildings were neglected and dangerous. Standards of hygiene were often appalling. Faeces and urine were left unattended. Morale was extremely low and could be attributed to the psychiatrist who was a poor appointment in terms of personality. Other medical colleagues were reluctant to work there because of the ‘current practices‘.

Administration was poor at every level with no clear lines of communication. When the hospital was taken over after reorganisation it was already run down and experiencing difficulties. The ‘new administration at an area level adopted a philosophy of seeking to improve the situation by non-intervention and persuasion. This policy was soon shown to be ineffectual but it was nevertheless persisted in for too long. […] Even though there was a failure on the part of certain members of the area management team to keep their colleagues properly informed of adversed developments, the area management team was well aware that the situation was deteriorating but lacked either the will or the skills to do anything about it. There were fitful, sporadic manifestations of concern, but regrettably, these were often more ritualistic than realistic contributions to a resolution of the difficulties.’

A ‘wait and see‘ attitude was adopted at regional level despite knowledge of the price of waiting paid by patients.

The Normansfield Inquiry, 1978

Thanks to Chris Hatton for tweeting this link earlier. 

 

Jane and Peter; No voice, no choice… just put up with it

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The second in this series of ‘Tales from the community’* features Jane’s fight to try and get her adult son’s care provider to engage with her and involve her in decisions around his care. Peter moved to a shared home with 24 hour care in 2001. Jane was excluded from decisions around his care. A Best Interests meeting was held in 2009 in which it was agreed that Jane should be involved in decision making for Peter. Two years later, still excluded, Jane applied to the Court of Protection to act as Peter’s deputy in decisions around his health and welfare. This led to no change on the part of the provider who continues to exclude Jane.

Jane then attempted to change Peter’s provider:

“So last year in December, I applied again to the court and somehow the provider and commissioners persuaded the Official Solicitor that as my son was autistic, he would not cope with change. So he had to stay BUT I had yet another court agreement saying everyone had to work with me on decision making as before.

Well here we are less than 6 months into this agreement, I have just found out that sometime last year my son had a new tenancy agreement and landlord which I knew absolutely nothing about. Also my son appears to be very short of money due to his benefit money being spent like water by staff over a long period of time, again without discussion with me.”

So what is Jane being excluded from? Here’s a couple of examples:

“From 2001 through to when I first took legal action in 2008, not one person involved me in contributing to Peter’s annual care reviews. A care manager told me later in 2010, “we did not know about you””.

 

Peter was rushed to hospital late one night, “supposedly injured due to falling from a seizure. No one told me about it until 9am the next morning. The staff member involved left Peter, who is autistic and without speech at the hospital alone from the early hours. He was left traumatised for a long time after this by being totally silent. He usually vocalises by “grunts”- poor man, I felt like I had let him down. No one spoke about this after. No enquiry, just pretend it did not happen. No voice, no choice… just put up with it.”

Jane has complained to the provider, to the local authority and to the CQC (the latter are taking forward Jane’s concerns, the former two are bouncing the blame between each other).

Jane ended her email;

“Sadly the money just runs out when dealing with these people, and quite frankly several thousands of pounds and two court agreements later they still can’t get it right.”

*These tales are presented without comment from me (which is proving harder than I thought). Names are changed. Other tales are also being told elsewhere… For example, you can read about Chris, about David, about Claire and Steven Neary. Here’s hoping that the public recording of these stories leads to some change, somehow. Positive tales are, of course, very welcome.

Pain, Dan and the dentist

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I’ve had a toothache on and off for a while now but ignored it. Pain schmain really. That’s the name of the grief game. Then it got worse and the dentist prescribed root canal treatment. I got a cancellation appointment for this afternoon. I was fairly practical about the whole gig. Noshed a load of pasta and tried to think what I’d do for the 45 or so minutes it would take. One good outcome of this whole happening is that I’ve ditched a load of worries/concerns. I got some new ones but happy to get shot of dentist fear.

As it was, I thought about LB. And the last time I’d been to the dentist with him. Sitting in the same chair. He loved his dentist. Dan was like a young Indiana Jones. A bit nerdy, enthusiastic, funny and clicked with LB straightaway. (LB had been banished to a ‘special’ dentist after biting his original dentist there when she tried to x-ray his mouth). We smuggled him back in a couple of years later and he was assigned to Dan. From that point, dentist trips were a highlight in LB’s social calendar.

In between appointments “Where’s Dan mum?” was a constant refrain. Often (not sure why) on a Sunday evening. I ended up concocting a bit of a life for Dan to satisfy LB’s questions.

“Where’s Dan mum?”
“Dan? Ooh, I should think at home now…”
“Where does Dan live mum?”
“Mmm.. I think he lives in Boar’s Hill..”
“Does Dan have a girlfriend mum?”
“Probably.”
“Has Dan got a car mum?”
“Yeah, I bet he’s got a sporty number.”
“Why mum?”
“Cos he’s a sporty type of guy.”

And back to the beginning.

Funnily enough, when he was at the dentist, LB was pretty quiet. He did what Dan told him with some gravitas. And a bucket of cool of course.

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The unit staff took LB to the dentist last June. They were surprised the receptionist wouldn’t tell them when LB had last been.

Dan had left.

So the story changed. For a couple of weeks.

“Where’s Dan gone mum?”
“Dan? Blimey, he was heading places. I bet he’s set up his own practice somewhere like Harley Street.”
“In London mum?”
“Yes. In London.”
“Where’s Dan mum?”

Weaving, ducking and diving

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Just a few rambling thoughts about the latest news, schmooze and misery to emerge this week. On Saturday news broke (in the most low key news breaking way possible) of alleged ‘bullying’ at a small residential school for learning disabled children run by a provider, MacIntyre, in Wales. Saba Salman provides a summary of this story here. Abuse Bullying at any provision for learning disabled people, particularly children, you’d think would be ‘news’ post Winterbourne.

Particularly if the CEO of the provider involved is the new lead of the Winterbourne Joint Improvement Programme (JIP). But the link wasn’t made.

NHS England also published the latest dismal stats/update around the JIP. No words really. I suspect some of the people involved must be looking back and thinking “Why the fuck did we call ourselves a concordat?”

Good intentions I’m sure at the heart of this group/concordat. At the same time I’m getting a bit uncomfortable about the constant waving of the ‘Winterbourne’ flag. Particularly given the abuse and neglect identified at STATT, Piggy Lane, Evenlode and now Womaston (the latter run by a very respected provider). Consistently referring back to one particular moment among so many is a bit self defeating really. I say this without wanting in any way to detract/play down the utter horror experienced by the patients/families at Winterbourne View.

The link between Bill Mumford and the school was made on twitter on Sunday. Today he issued a heartfelt personal statement; Doing the right thing. Action has clearly been taken, the police are involved, etc etc etc. Etc with bells on.

What’s the problem with this?

Well this really:

Bill Mumford

And what this means.

And?

How long does it take to approve a personal statement about abuse discovered in March? By a concordat who, er, have seemingly achieved little else? In a timely fashion, the JIP approved the statement two days after it almost became news.

I’m confused/alarmed about the ‘power of the process’ in instances of horror involving state organisations to keep things secret. What we could and couldn’t (and can’t) say about LB’s experiences seems to be mediated by the spectre of various processes that lie ahead (the police investigation/the inquest). What this really means is a bit of a mystery really.

Now that BBC Wales has reported the allegations at Womaston, the publishing of statements by MacIntyre and Bill Mumford suggest that the secrecy aspect is a little bit contrived.

Another interpretation to the above is that there was a bit of (explicit or implicit) wishful/hopeful thinking that the link between Bill and the school wouldn’t be made. That a bit of abuse bullying at a small school in Wales would be largely ignored by the media. Not an outlandish wish in the circumstances. Again, quite possibly with the ‘best intentions’ in line with concordat aspirations. Not rocking a rocky boat and all that.

A third interpretation is that the workings of top level dealings in this area are so infused with incompetence that reaction rather than action is the norm. The old procrastination model.

I don’t know which of the above fits the Bill, if any. But I hope, if I was anything to do with a concordat (sigh), and/or head of a leading light provider and abuse bullying happened on my patch, I’d shout from the rooftops about it. To alert the whole shebang (people, families, commissioners, providers, NHS England, local authorities, social workers, teachers, support workers, clinicians, health professionals, whoever) that this shite happens. And if it can happen in my blinking state of the art (in the context) organisation, it could happen in yours.

It’s time to cut the crap, whatever shape that takes. These are people’s lives we’re talking about.

Procrastination, the never never and Barry

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I watched a set of podcast lectures the other weekend about research methods. This was a novel development. I was able to crack on with a bit of much needed clearing up/cleaning in the space close to the computer while learning some stuff. I could probably turn the sound up louder and apply this focus beyond this immediate area (a metre or so) but it was a good start.

I was also struck, from a teaching perspective, by the procrastination in several of the lectures. The “and I’ll come back to that..” refrain. Without ever doing so.

“Ooph”, I winced, shovelling dust mountains off paperwork dating back ten years. “Not good. You can’t push the tricky bits to the never never.” [Gulp]

STATT was an exemplar in procrastination. Week after week community team meeting minutes recorded what was going to happen. With no actual doing. And no one bothered to check that the proposed doings had been done. It was like small scale performance of hot air to the tune of £3500 a week per patient. Pretty spectacular really. Our dealings with the Sloves since include some cracking moments of procrastination. The bullshite detector must have a missing battery or summat.

When someone dies a preventable death in the NHS, one of the first things that should happen is the stamping out of procrastination (and prevarication). It’s inhumane and offensive. And is experienced as a type of ‘the dog ate my homework’ excuse to the shattering of lives. Allowing or enabling either of these two ‘Ps’ (and the ever present billy BS) is further evidence of glut, disregard, disrespect, indifference and an enormous finger at an agenda allegedly prioritising transparency and candour.

There should be a ‘procrastination police’ type person (the old caped crusader even) to stop faff, procrastination and prevarication on behalf of families.

A Barry will do. It really ain’t rocket science.

 

 

For the nerdy, for learning and toast

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Been chewing over whether or not to share this chronology here. I recently received a copy of the “Chronology of Trust actions with the family from the time of Connor’s death to sharing of final investigation report with Connor’s mother” amongst a few documents as part of an Access to Records request. The Slovens circulated a snappy little version of our communications with them to key stakeholders. Oh my giddly gawd.

I have to warn that my revised version, with the gaps filled in, presents such a micro level of grubby detail it’s a visual version of nails screeching down a blackboard. So this is really only for the nerdy* and for feeding into learning how to communicate better with families when you’ve allowed your provision of healthcare to slip so far down into shitsville, a young man with epilepsy is left to drown in the bath. Within feet of four members of staff. In a specialist unit.

For those of you who choose not to read it, here’s a bit of Tori and Toast.

*Nerdy is good in my book.

Poohead and wnakers

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Yesterday John Williams adopted Day 57 of #107days and dedicated his comedy show, ‘My son’s not Rainman’, to LB. He was performing at the Kenton Theatre in Henley along with Dave Griffith, aka King Cnut. Dave in a bizarre coincidence given we’ve followed each other on twitter for a while, is actually Will and Owen’s uncle. Funny world. The show was a sell out.

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John (I think I can call him that now as we had a big old hug and he is like one of those people you feel like you’ve known your whole life) was hilarious. He captured the whole randomness of life with a dude like LB and his son, Fin with the funniest of funny anecdotes. Stories of crazy golf, blue tac and biting. A letter his son wrote him when he went away, signed ‘lost and lost of love’ with a matchstick drawing of the pair of them. A letter he later defaced adding Poohead and drawing a turd on his dad’s head. We laughed till we cried. What made the show so powerful was the deep love and affection that John openly demonstrated for Fin throughout. And what was even more blinking brilliant was how much the audience laughed, everyone getting a dose of a wonderful dad son relationship that is just a bit different.

John ended with a massive shout out for LB, #107days and played Divine Comedy/LB film on the big screen. More tears…

After Marcus Richardson’s debut as a comedy poet (very, very funny with moves that have no name), it was King Cnut’s turn with ‘C U in Court’. This is a hilarious story about ‘the little man’ taking on a giant corporation over the use of ‘CNUT (French Correction)’ on t-shirts. Dave’s strong sense of justice combined with remarkable determination and tenacity meant he not only refused to be bullied by the French Connection monster (who seem to have PR/Comms staff fresh from the Sloven School of Staff Training) but became an expert in trademark law and set about policing their design activities. Brilliantly funny and astonishing.

It was a right old belly laugh of an evening and seeing John at the end of the show, working his bollocks off selling LB’s postcards in the foyer was awesome. 58 days of something you couldn’t make up.

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Versions, power and duplicity

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Among the flimsy paperwork I was sent for my Access to Records request was a Sloven briefing to Monitor about LB. Before I have a bit of a chunter about this document, it’s worth having a speedy recap on a few points. We know LB shouldn’t have died. His death was preventable. We know the unit he was in (and other Oxfordshire provision run by the Slovens) was/is shite and this level of crapness was no real surprise to anyone involved (other than patients and their families neither of whom really count because of the old learning disability obliterator).

Over at Sloven Towers, KP and her crew are able to seemingly draw on unending resources to buy in whatever expertise they want to try and maintain the different, now flapping, bits of their reputation. There will be a bundle of Freedom of Information requests I’m sure around how much they’ve spent trying to scrabble out of the pit they themselves dug.

All funded by, er, taxpayers.

So, the Monitor briefing. Well it’s more of a version than a briefing really. A version that skips through a sunny and bee-buzzing orchard, plucking rosy red apples from the trees, carefully positioning the maggoty rotten ones beyond view. Bit like the chronology of communication with us the Sloves produced for their key stakeholders. A chronology so full of holes it’s (not) laughable. But these documents can be circulated without scrutiny (well, until someone in the know points out you can request them) behind closed doors. The Sloves free to construct a version of events which paints them as ‘doing right’ and me (because I’m always a random lone ranger in Slovenworld) as unreasonable and irrational. Because that’s how it works. The same lack of real scrutiny in overseeing their provision in Oxfordshire until LB’s death apparently extended to their actions since.

The Monitor version has a whole section on social media, some of which I tweeted yesterday. A core paragraph;

Sadly, since the publication of the independent report the Trust has been subject to trolling on Twitter, a number of staff have been directly targeted and have felt intimidated by the Twitter traffic, we are aware of at least one staff member’s account having been hacked and a bogus Trust Twitter account set up.

Eh? Really?? Trolled? Sadly? Wow. Hacked and intimidated? Breathtaking. Hacked and intimidated? Really? For the record, sadly doesn’t come near the preventable death of a completely vulnerable young man in ‘healthcare’ provision milked at a cost of £3500 per week. And doesn’t touch what we’ve experienced since.

The Sloves go on to inform Monitor that:

We should be clear that there is absolutely no evidence that Sara Ryan is personally responsible for this trolling, hacking or intimidation but there are clearly some people who wish to use this case inappropriately.

You are kidding me? This is a wind up, surely?  A briefing document to a government regulatory body containing such a snidey, spurious, pointless sentence. What sort of level are we operating at here? I have an image of the people of Monitor sitting around, puffing on pipes (dunno why) muttering ‘Ooof… Trolling eh? Nasty business.. I put my money on that bloody mother again. And the lead piping…No, no the candlestick. The candlestick!’

Do Monitor care about alleged ‘trolling’? Is it relevant in any way to what they do as an organisation? If there’s ‘absolutely no evidence’ I was responsible why bother to mention it? Other than to discredit?

Awful. And so wrong. For so many reasons.

Not least because it completely disregards the organic and transformative level of engagement that #justiceforLB/#107days reflects and has generated.  A drop of positivity to emerge through such a catastrophic and unimaginable happening. If I was in any way connected (through work) to such an awful event (that simply added to long known about shortcomings, failings and the complete shiteness around how a particular group of people are treated) I’d welcome the emergence of a movement that seemed to capture something fresh, different and open up different ways of engagement. Of making some sense of the incomprehensible.

The Sloven briefing/version was written a few days before the start of #107days. At a point at which they were clearly completely internally focused, denying LB any humanity and relentlessly working silly discrediting lines of action. Stuck in the groove of the last century.

Given that we’re now at the halfway mark of a campaign/movement that’s broken campaigning rules (by not having any) as well as illustrating the ‘power’ (not sure if we have any real power but hey ho, hopeful till proved otherwise), potentially democratising space, and inertia smashing of social media, maybe Sloven staff/directors (and other relevant organisations) could try take a moment and think beyond themselves and their reputation?

Maybe have a bit of think about how they would feel if LB if had been their child? Their brother, grandson, nephew, cousin or friend. Try and kick aside the stale and worn bolt holes of defence, discredit and denial as a default position. Who knows. Maybe this will encourage an authentic turn to openness and transparency?

Which may lead to something.

Postscript 1: Victoria Betton has written a thoughtful response to the trolling accusation here with sensible suggestions for better NHS engagement on social media.

Postscript 2: I can hear the reverberation of ‘Well she calls us Sloven on her blog and Twitter which is pretty rude/disrespectful…’ Yep. I do. Because, as I’ve described above, we don’t really have an awful lot of power here. Irreverence is something LB had in buckets and one of the (many) characteristics I really admired about him.

Postscript 3: I despise describing LB as a vulnerable young man. It’s something I fought against his entire life. Until the end. When he was completely vulnerable. And should have been properly looked after.

Postscript 4: I’ve now changed the last sentence of this post about five times because I don’t have a last sentence. Just throwaway words that don’t mean anything. Maybe we can have a pending end to the post. If anything actually happens.

Today, the tanker and other stuff

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ryan5-156 ryan5-155Today LB’s grave was looking beautiful in the spring sunshine howl, I pretty much finished my patch for the justice quilt (bit wonky but every stitch imbued with love and memories) and a couple more remarkable days were pledged on #107days. 107 days fit to bursting with complete wondrousness in so, so many ways. Action, in any shape or form. Big or small. Individual, collective. Just action.

Action.

Rumour is, we may be making some progress. The tanker (of some change) may be turning. Our bar is, as ever, in the realm of anything learning disability related, set to below zero. A shameful, shameful position of expecting nothing. But word is that relevant people may be listening. That what has become visible since and because of LB’s death is a little bit too much to sweep aside and ignore howl. Here’s hoping…

In the meantime, you can get involved in the campaign here. And our (completely voluntary) campaign manager, the indomitable George Julian is plotting to shave her head.

We need to keep that tanker turning.

Models of disability and ‘real’ epilepsy

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Having some serious ‘what’s the point of a lot of academic research (my own right up there with a few others) thoughts at the mo, particularly given the wealth of research around learning disability provision. We sort of know so much in many ways and yet so little has changed for learning disabled people in the UK. Yes, there are pockets of good and brilliant stuff (anecdotally, largely where some cracking person or group of people have got together to just do something.) But overall, it’s pretty crap or worse.

Yesterday, this was tweeted by Chris Hatton…

costs

Whoa. Really? Really???

Half a £billion a year? For being warehoused, out of sight, on the edge of towns. Restrained, subject to abuse or other acts of violence and neglected.  Half a billion???

The Winterbourne Concordat (sigh) aimed to get people pretty much out of these hell holes by June 1st. The outrage generated by the original Panorama expose of abuse has clearly lost any welly. People have moved on, learning disability really ain’t sexy and no one with any influence is prepared to do anything. (I’m losing count of the people who mention how well we’ve done to get the publicity/momentum we have on #107days… It’s like trying to crawl out of a 30 metre deep mud pit with some cocktail sticks and a cotton reel).

Today Rich and I had a ten minute revisiting what happened to LB (various versions of this happen several or more times a day… typically underpinned by despair, disbelief, rage, intense sadness and inevitably tears). Today we focused on the consultants involved who, in their wisdom, decided to ignore, pretend or insist that LB didn’t have ‘real’ epilepsy and wasn’t having increasing seizure activity.

(This reminds me of a conversation with someone who said (after LB’s death) that she worked with children with epilepsy who had “proper seizures”.) Eh? LB was ‘medically’, ‘officially’, and about as blinking properly as you can be, diagnosed with epilepsy. (Eventually). Numerous people, us, his teachers, paramedics and A&E staff witnessed him having seizures. I’ve never seen anyone having a seizure before and I saw him having various types of seizure include tonic clonic which really is in your face seizure activity. He had epilepsy.

His sensitivity to changing medication was also known and recorded. The consultants at the unit were told that he was having increasing seizure activity, by people who knew him better than anyone. And yet they sat in a meeting two weeks before he drowned in the bath and decided he wasn’t.

In a unit costing around £3500 a week.

In some ways the cost is completely irrelevant. We’re talking about the life of a young dude who had only just nudged into ‘adulthood’. But at the same time, the enormous cost of these places contrasted to what’s actually delivered speaks volumes about the ambivalence and (maybe fear?) attached to people like LB. The cost of keeping em penned away from the rest of us is paid. Seemingly indefinitely. Seemingly without question. Even when the extent of the atrocities that happen in these spaces are known about.

And any aspect of their lives, including clear, pretty straightforward medical issues can be ignored. The ‘learning disability’ trumps all.

The disability (studies) movement in the UK has been caught in circular discussions/debates/disagreements and revisiting distinctions between social and medical models of disability for years now. Pretty tedious and dusty really. But what’s astonishing, and illuminating, is that the medical profession denied LB the right to be epileptic. They denied him his medical label.

They denied him his right to be epileptic. Because they couldn’t see beyond his ‘difference’. And this, ultimately, denied him his right to life.

Anyone got a copy of the Hippocratic Oath handy?