The days afterwards… sharing experiences

I found out the fullish details of the unexpected death of another dude we knew about in Oxfordshire this afternoon. Kind of lucky (is that the right word?) I had the day off. His mum (I’ll call her Maria for now) was worried about how upsetting it would be for me to read this. Yeah. It was. As upsetting I’m sure as it was for her to write it.

It was also shocking. And harrowing. Damning of health and social care for dudes. And so illustrative of how completely inconsequential our dudes lives are to those who are paid to provide care and support for them. Not necessarily to those who actually work directly with them, but certainly pretty much everyone above that tier. How can this be?

I just wanted to flag up a few things that leapt out at me now about those early days.

When an unexpected death happens within the NHS, families have no idea of “the process” about to unfold. And not knowing means that the NHS holds all the power and, probably reasonably regularly, the ability to keep things unexplored, unexplained and out of the public domain. I know in the post-Francis world of candour and transparency this should no longer be the case. But as the old world shows no real signs of waking up and joining in, I’d advise families to think the worst. Sadly.

I was contacted pretty much straightaway (on twitter I think) by a wonderful barrister who had been reading my blog. She advised contacting INQUEST immediately. I think I spoke to her the day or so after LB died but I can’t quite remember. It was such an unimaginable time. I emailed INQUEST on the Monday morning so suspect I must have done.

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LB died on the Thursday not the Monday. This email alone illuminates how fucked up the system is. Can you imagine emailing an organisation less than four days after your child’s death in hospital to ask for advice? Advice? How can this be?

At the same time, it underlines how important it is to be informed. Within four hours of sending this email an INQUEST caseworker was in touch and phoned to explain exactly what would happen, what we needed to do and what to expect. It was a terrible shock. The cuddly NHS suddenly seemed a whole lot less cuddly.  We were recommended a solicitor within days and I was making calls to the Coroner’s Office to demand that LB’s autopsy was done properly. Can you imagine?

Maria and her partner weren’t given early warning of what they should do and what lay ahead of them. So they dealt with different horrors. Just as damaging. What was similar were the throwaway emails from Ridgeway/Sloven Health. ‘If there’s anything we can do’… type comments. These statements are so awful they should be banned from any interaction to do with unexpected deaths in the NHS (or any setting really). How are you supposed to respond? Where on earth do you start given where you are? What can you do? What are you offering? What do you mean?

Maria’s husband received a mobile phone message from the manager of her son’s ‘care’ home stating they should let him know if he could ‘help with the funeral arrangements’. Eh? You’ve just found out your child is dead and some suit is lobbing meaningless ‘small talk’ at you. Vague comments around ‘help with funeral arrangements’ is nonsensical to a bereaved parent. What help? Making sandwiches? Finding a venue? Stumping up the cost? Choosing a coffin? Deciding on burial or cremation?? It’s at best a careless offer and at worst a dirty trick. To tick a box and scarper as far from the fake offer as quickly as possible. Not sure there needs to be much of a sprint at this point as I can’t imagine many parents/family members will pipe up with any suggested ways of helping.

I don’t know but suspect this whole vile crap, uncomfortable offer comes from empty policies coloured by the discomforting thought of unexpected death within an organisation designed to sustain health. I’d suggest get over the discomfort and work out the type of support families in such situations would want (practical support like food, cleaning, clothes washing, money to cover being out of work, funeral costs, paying bills, contact with schools/university/employers, emotional support like counselling, etc, etc) or withdraw the empty offer. Even with good intentions it all becomes nonsensical given the seemingly unavoidably enormous costs involved in preventing the NHS steamrollering over what’s happened.

Er, yes, thanks, can you provide the egg sarnies at the funeral? Cheers…” [Up to £25-30,000 of legal costs? Wha??? … ]

In the meantime, the anniversary of LB’s death is getting closer. Something I’ve been able to avoid dwelling on largely because of the remarkable distraction of #107days. If any influential NHS or related peeps want to openly chuck their Post-Francis commitment and belief into the transparent, democratic and collective joyfulness captured in these days of actions, I’m sure we can fit you into existing days. In the spirit of making the incomprehensible/baffling simpler. And hopefully to show early steps to different ways of doing and being.

An antidote to the obscene. And inhumane.

“A place I call home”

Warning: It’s 12.30am. I’m on Madison time after a full on, action packed four days in the States followed by Epic Party Night. My ability to think, write and judge is probably a bit wonky. I just caught up with the latest ‘news’ from the Winterbourne Joint Improvement Programme and I’m going to be a bit short and to the point. LB died (he died?) and I really don’t want to hear more shite about shite.

    1. Ditch the niceties and stop thinking there is some “treat” space to ‘focus energies and attention on what can be achieved’. Real people are experiencing crapshite experiences that would not be acceptable to most people’s pets.  Stating ‘We are where we are’ as if there is, or has been, no agency involved is offensive and unacceptable.
    2. The passive, hopeless ‘we’ve only got a year to go so what can we achieve?’ is nails on blackboard stuff. If you take on a tough gig, you should really have an understanding of the terrain.
    3. Ditch the ‘we must give hope to the individuals and families who are currently in hospital settings…’ Those individuals and families really don’t need your empty words. They have a much more sophisticated understanding of the landscape of provision and horror they or their family members are experiencing. They want action.
    4. ‘We must not decide the challenge is too difficult and give up’. Er. Not sure what this is supposed to mean/achieve. But if you want to bung me whatever salary scale to work within such parameters, please do. “Ah, thank you NHS/social care employer, I took on the task with good faith but the challenge was a bit tricksy so I’m giving up… Oh and that tiny blip about abuse in one of my residential provisions? We really don’t need to go there, I’m doing my best…”
    5. ‘I’m pleased to announce there has been a 100% return from NHS local and national commissioners’. Eh? So there is a choice attached to providing these figures?  As ever, I can’t help wondering if there is some sort of longstanding joke going on. The whole system seems to be hamstrung by nonsensical demands and yet in areas in which attention really needs to be focused, there is an ‘opt in’ attitude.
    6. Stating ‘if you want to know what the situation is in your area please do ask your local CCG’ is a bit like saying ‘Rarra hoo ho, bolowlo, bloooblom gara‘. Most people don’t know what a ‘CCG’ is and if they do, contacting them is one of those mysterious (utterly frustrating) processes.
    7. The discrepancy between the figures and ‘what was agreed by the partners in the Concordat’ is something you should be dealing with. Presenting a set of unexplained figures that don’t fit with the model of what you expected to achieve at this point, with a bit of a curious question mark attached is, erm, fucking unacceptable.
    8. Not sure now you have ‘robust and detailed quarterly figures’ this will actually lead to change.
    9. Talking in terms of ‘local heroes’ is pretty offensive. It shouldn’t be seen as ‘heroic’ to provide appropriate support/provision.
    10. As I always bang on about, the focus on the well being of people who were in Winterbourne View ignores people in other, similar settings.
    11. ”Unsticking’ complex situations’… ? Eh? What does this mean?

Basically, what a pile of old crap. It strikes me that we have an extreme case of provision for a group of people that no one cares for or about, other than their family (if they have one), that have a historically designated space (despite a body of evidence that challenges this space) in which all bets are off. Restrain, medicate and leave to fester. And yet Commissioners can find around £200,000 per year to keep people in places you wouldn’t leave your dog in for a weekend.

LB died (he died?). Can you imagine? Can you imagine your 18 year old son losing his life through sheer carelessness in a hospital? Nearly a year ago now. The only concrete response other than the crap hole unit he was in closing (which is a cheap shot to avoid actually changing provision), is a blanket ban on bathing for remaining patients in the next door unit.

I want to ask the Winterbourne JIP/Department of Health/NHS England;

What the fuck are you actually doing?

What have you done all this time?

How much funding has been spent on the Winterbourne JIP?

 

The Epic Party Night

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Last night was ‘the party night to end all Justice for LB party nights’ (Day 73 of #107days). We don’t do things by halves on this campaign. There was a two pronged approach to this night; a big bash at the Oxford Sports and Social Club organised by Becca and the life raft and an English Country Dance at Bletchingdon Village Hall organised by Caroline. I work with Caroline and she came to the JR hospital with me on July 4th last year. I don’t know what it’s like to be with someone in such unspeakable circumstances (my mate Mary who works in A&E was also there). Caroline shared that experience.

ryan5-679The big bash caused Becca and the gang quite a few sleepless nights. Volunteers queued up instantly – two great bands from Oxford (Mean Montage and Yowash), Alan Joyce, the bacon bap seller from outside Oxford Rail Station, NansforJustice who covered the cost of the room which was offered to us at a great rate by Jenny O’Loughlin, the General Manager at the Oxford Sports and Social Club (OSSC). The most stylish tickets imaginable were designed by Vic, Sam and Trev from Identica, and LNS Print produced em for free. Frog Orange produced an Eddie Stobart themed balloon bouquet and backdrop ‘LB’.

The ticket sales were less hot off the press and given the ballroom at OSSC holds hundreds, there were some anxious moments around ending up with a handful of peeps kicking around awkwardly in the face of such generous contributions. This was an anxiety Becca, her family (particularly Chris, Rory and Julian) and the life raft absorbed and ran with. And, on the night, there was a brilliant turnout. Nothing like a bit of ‘if you build it they will come’ with a hefty dose of behind the scenes organisational graft and magic.

And it was a truly great party. The music was fab, the baps and ice cream fantastic. Charlie’s Angels were there along with other school staff, LB’s classmates, friends, family, Parasol, the young dude from Day 41 and many, many more.

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What helped make it such a good party was the space. The giant ballroom (Emperor Ballroom) at the OSSC is a legendary space; enormous, vintage decor, opening out onto a patio (right word?) with tables and chairs,  a cricket pitch and playing fields. With a good value bar. It’s a space that allows different levels of party going/attendance and young kids/dudes or adults to randomly roam, run, spin, withdraw, play a spontaneous game of footy and/or dance their socks off.

ryan5-686 For us, it’s a space in which Rosie stood in for Rich when she was about 12 to hand out medals to the tiny footy team he coached (and she assisted) in his absence. A fear inducing experience she carried off brilliantly. Around the same time, Rich was hoiked out of the enormous line dancing class we went to for being too disruptive. He was made to first stand at the front, then excluded. Last night he returned to the stage in triumph as The Amazing Geoffrey and Kid Rage (aka Rich and Busker John) did a short set of LB’s fave songs to a delighted audience. Their first ever gig together.

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It’s also where we held the party after LB’s do last July.

Sad times that the club is due for demolition in 2016. But an epic ‘party night to end all Justice for LB party nights’.  In Bletchingdon and Roman Way, Cowley. LB would have loved it.

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More talk and the bath ban

LB’s death shone a spotlight on the inadequate provision for learning disabled people provided by the Sloves (and Oxon local authority). I don’t expect they’re out of the ordinary across NHS Trusts though some of their actions are breathtakingly shite. Once visible (well, once published in a CQC report a few months later), the Sloves were compelled to look lively. That LB’s death sparked no action indicates the level of problem we’re looking at here.

So what did they do? They flew in a trio of experts to examine their pathways and provision. KP, her merry women and man went on tour, meeting the Oxon Learning Disability Partnership Board and other people/organisations. A big, big new plan was developed, discussed at length in their board meeting/minutes. The modern way… In the meantime, they became subject to enforcement action by Monitor. Serious stuff. The march of change backed up by big guns.

Wow. A blast of fresh air through learning disability provision in Oxon. LB died but hey, other local dudes will be getting service with bells on. Person centred, buffed, polished, informed and thoughtful. New committees formed and a Quality Director post created.

Meanwhile, back at Slade House, the John Sharich unit was re inspected by the CQC. They couldn’t inspect STATT as that was conveniently closed. The inspectors found that a lack of therapeutic environment remained, staff were still in the office and a blanket ban on baths was in place. Yep, a ban on baths. Despite none of the remaining patients having any risk factors associated with bathing. And despite a patient staff ratio of pretty much 1:1.

A bathban?

The Sloven journey for the last 11 months has been largely one of performance, waste and prevarication. An exemplar in talking the talk to persuade the great and good they’re up to the task. Meanwhile on the ground, clearly a million miles from any understanding of person centredness or good provision, LB’s peers are being punished for his death with breathtaking disregard for their human rights.

This news caused disbelief and incredulity over on twitter. One person tweeted, if a patient choked to death in their care, would they implement a ban on eating? Sadly a young dude did die in circumstances a bit like this a year before LB. But because the Sloves have so far managed to keep a lid on the circumstances surrounding his death, nothing has changed.

Breathe easy dudes and families of Oxfordshire, eating ain’t banned yet.

Taxiing on the runway

imageI flew to Madison on Monday on a work trip. This involved two flights. On the first, to Chicago, I took some work to do then planned to watch a film and chill a bit. There were no freely available films. I worked till my laptop battery ran out. Leaving three hours left of the flight. This was a bit weird as I always look up at the sky when I think about LB. (Dunno why really. I just do…) When I was up there, without much to distract me, it felt odd.

I sat next to a woman who did sudoku, without break, for the entire length trip. On either side of us were elderly couples. One of the women flicked through her holiday pics on her camera. I couldn’t help having a peek. Sunshine, sea, her and her partner, other people, celebrations, sunshine, blue sky. I felt consumed by an intense and raw sadness about what had happened to LB. And to us.

A few hours later I was on the second flight to Madison. Without taking off. Storms meant we did a slow taxi for a couple of hours, in and around the runway spaces. Trailed by a queue of different sized and decorated airplanes, passing catering trucks, transit vans and stationery trucks. It was like a careful tour of the inner world of the outside space of an international airport. ‘LB would bloody love this’, I thought. Looking up at the sky.

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At what cost and who really cares?

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

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

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

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

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.