The pigeon in the chimney

Nearly two weeks ago now, we had a pigeon in our chimney, in the bedroom. It took ages to come down, bringing years worth of chimney shite with it. The fireplace has one of LB’s bus pictures in front of it and once it landed, the pigeon just calmly poked it’s head round the side of it. Rich was ready with a cloth to catch it and release it out of the window. It did a massive loop around the houses then flew away.

Ten minutes later, the Health and Safety Executive rang. They said they will be prosecuting Sloven under Section 3 of the Health and Safety Act. Tears. The following day, Fran rang. She had been at a meeting with Oxford Health and commissioners where it was confirmed that, after quite a battle, the Slade House site would remain with Oxford Health. She said there were tears. More tears.

Jim Mackey, NHS Improvement, told Andrew Smith, MP:

“Southern Health will not receive a cash consideration and will record a non-operating ‘loss’ item in its accounts.”

I think that’s pretty much it now. Other than a shindig at the Oxford Magistrates court when the prosecution is held.

Thank you. I think we all did a bloody good job, as Connor would totally expect.

Slade House, dude selfies and the stars

An incredibly difficult week for some Oxfordshire families who are living the lack of appropriate support at a knife edge, or so much worse. I’m going to briefly highlight some good stuff that is happening in between the shite.

Oxford Health are taking over from Sloven (in July officially). They have picked up a right old mess but the new learning disability lead seems to be a rare senior NHS professional who has human written all over her. At an extraordinarily tense and distressing meeting this week she got it, she acted and she demonstrated she was a force for good. Fran reminded me this week it was 16 years ago we did a survey of the experiences of families in Oxfordshire. This flagged up the terrible stress families were under. She messaged me; “Looking back we were so naive in our basic hopes and expectations.” [Howl].

Families are working with people like Noelle Blackman, from Respond, and Oxford Health to do their best to create something that actually works for Oxfordshire dudes. What that will be isn’t clear though the expertise families are offering, together with a Trust who listens and seems willing to run with thinking outside of the typical, constraining and soul destroying, is deeply reassuring.

Finally, the Slade House site is not being trousered by Sloven. Our relief that this particular fight has been extinguished is beyond words. Nearly four years now, of campaigning at an intensity that cannot be indefinitely sustained, the prospect of chaining ourselves to the railings filled me with despair. This is a fucking ‘victory’ [not the right word but there are no right words] against injustice.

The deal (not quite signed yet) apparently is if Oxford Health sell the site within 5 years, Sloven get 50% of the dosh. This seems fair. Here’s to some creative planning around how this site can be used. I mean, just imagine if Oxfordshire became a pioneer in actually getting it right? From rock bottom to actually reaching for the stars…?

Four deaths, heads and a medical director

Between Oct 2010 and May 2011, four men died unexpectedly in St Andrews, Northampton. All patients in the Grafton Ward; a 20 bed, low secure ward. Bill, one of the four, featured in Under Lock and Key a few weeks ago. You’d imagine that four patients dying unexpectedly within a six month period in the same ward would send shockwaves around St Andrews and wider.

A copy of the investigation into these deaths landed in the Justice Shed yesterday evening. The terms of reference suggest that there was some switched on thinking around these patients’ human rights:

No. The Charity clearly didn’t understand the word ‘independent’ or their obligations arising under Article 2 of the European Convention of Human Rights. The investigation was led by the St Andrew’s Medical Director supported by the Head of Research and Development, Head of Physical Healthcare, Head of Health and Safety Investigations and Head of Pharmacy. About as far from independent as you can get.

Unsurprisingly, there was zero consideration of the four lives that ended, prematurely. The remaining terms of reference were:

The executive summary states:

It was the patients themselves what done it. With their long standing medical problems (clearly untouched by the long term leading specialist care provided by St Andrews at enormous cost to the NHS and other commissioners). One patient had lived there for 18 years. The day before he died, he refused to have his vital signs checked on two occasions.

Whatever way you cut it, this strikes me as a catastrophic fail on the part of St Andrews. “The UK’s leading charity providing specialist NHS care.”

They couldn’t even be bothered to proof read the final report.

A tale of two releases

A Bermudian journalist, the only independent journalist on the island, popped up on twitter this week, tracking down details of the recent announcement that St Andrews Care (who were the subject of the documentary, Under Lock and Key) are going to ship patients from Bermuda to their ‘care’. He published this story.

Here is the original news release published by St Andrew’s. Tiny type, sorry.

St A bermuda news

And the revised one after the press started to get interested.

St A bermuda news 2

To save you squinting too hard at them both, the main differences are:

St Andrew’s has achieved a ‘new first’, not by winning ‘an [sic] contract to provide care to forensic patients’, as originally stated, but by ‘by being selected as a preferred provider to support the Bermuda Health Hospitals board in providing care…

Bit of a difference, raising questions about what is actually going on between St Andrews and the Bermuda Health Hospitals Board. And whether there is there any scrutiny of these negotiations.

The sentence about Bermuda being a small island with limited resources and people with mental illness being held in the island prison system has been removed.

Mmm. Probably best not bite the hand that feeds you. The original statement suggests that, possibly, there may not have been much consideration of the tender process, context and history on the part of St Andrew’s.

Instead of the the ‘contract being awarded at the end of February’, the story has changed to ‘contract negotiations are now being started’.  Puzzling. How these dance steps are being played out between the Bermudian system and St Andrew’s, outside of any apparent transparency,  engagement or public consultation is chilling.

The second press release drops any mention of three patients ‘set to travel to Northampton as part of St Andrew’s Men’s mental health pathway, with up to nine patients due to join St Andrew’s in the coming months’. I’m relieved this is currently disappeared. The way it was written sounded like the first three patients and the subsequent 9, were coming to join some sort of corporate team building exercise. Not wrenched thousands of miles from homes and families they will, more than likely, never see again. I’m sure it won’t stop this happening but any reflection on and consideration of what is being plotted can only be a good thing.

Finally, the statement from the Executive Director of Nursing and Quality has been revised. The opening sentence about ‘bringing the charity income from new sources’ is deleted. 

Income from new sources… Before the health and well being of these patients. Extraordinary. Since when did a massive charity need new income? Given the gargantuan salaries of the exec board and this latest money spinner, the Charity Commission should be having a bit of a snifty around this bunch. I can smell em from here.

Bedshaped…

Today was not a good day (Brexit aside), with a snippet of sunshine. A good mate and her family are enduring a family life that sits outside of the outer ring of anything remotely resembling acceptable. Their biggest fear right now is that their son will be admitted to St Andrews, in Northampton.

Yesterday, Channel 4 held a round table event to discuss the recent harrowing Dispatches documentary, Under Lock and Key, featuring St Andrews. Despite their glitzy website and talking the talk, St Andrews clearly falls short of providing the world class leading mental health services they claim to do. In fact, it’s hard to imagine what the £11,600 a week buys for some patients (other than the enamel removing senior executive salaries). This doesn’t stop NHS England and other commissioners flashing the cash regularly and consistently keeping people within their increasingly prison like walls.

Just this this week, the St Andrews adolescent provision received another ‘requires improvement’ CQC inspection report. Scrolling through the ‘view all reports’ link shows that their adolescent provision has required improvement since back in the day. Wow. Requiring improvement and charging more than it costs to live at Disney World*. This is, simply extraordinary.

The latest inspection report shows that, for your buck, you get a hefty wedge of seclusion and restraint. Of the four wards of 10 patients (adolescents) in each, the prone (prone) restraint figures per shite named ward (of an overall 905 recorded restraints in the past year) are; Acorn (52%), Bracken (33%), Fern (26%) and Brook (11%). This is, simply, scandalous.

Acorn, Bracken, Fern and Brook. Elsa, Mickey, Snow White and Mowgli …

The Channel 4 gig demonstrated the passion of the filmmakers and families featured in the film, and their commitment to ending the inhumane practices so many people are subjected. I’ve a lot of love for Alison Millar and team, who clearly forged relationships with families and did a shedload of research, and Channel 4 for hosting the event with gravitas, exemplary time keeping and breakfast. The lack of public outrage after the film was shown demonstrates the mountain they, along with so many of us, including the indefatigable Norman Lamb, are facing in trying to stop the careless brutality inflicted on so many people and families.

Sadly, this brutality doesn’t seem to penetrate the web of collective myopia too many senior people implicated cosy into. [There were no representatives from NSE England or the CQC.]

I was sitting next to Laura and Burt whose son, Bill, died from constipation in St Andrews. Laura, at one point, asked the Northants MP if he had ever stepped foot inside one of the new, enclosed quads that the swanky new build incorporates. A constrained daylight with no view. He didn’t answer.

I had a three hour meeting this morning, in a local hotel meeting room, providing supplementary evidence for the GMC. This is in advance of the tribunal of LB’s psychiatrist, scheduled for two weeks in August. Over four years after LB died. It was a deeply upsetting experience, despite the sensitivity of the solicitors collecting the evidence. How could it not be?

I’m listening to Keane tonight. The tears are back. Rich said earlier; “I feel we’ve gone back three years”. I dunno. I’m kind of out of ideas.

Where are we at?

  1. Certain people are dying premature and preventable deaths without scrutiny. Trying to gain any accountability involves unspeakable efforts by families.
  2. Commissioners/NHS England don’t know what good looks like and chuck dosh at crap. This generates ‘credibility’ and licence to provide further shite, leading to the growth of large scale institutions like St Andrews.
  3. There is little, or no, good local support to either prevent admittance or enable people to come out of units.
  4. Families endure unspeakable situations to avoid inpatient admittance.

It is a pile of shite. Just as it was four years ago when LB was admitted to the unit.

*Thanks to Tim Keilty for the number crunching here.

The solicitor, the student nurse and scholar activism

On Tuesday Katherine Runswick-Cole gave her inaugural  lecture which touched upon numerous highlights of her work over the past 10 years or so. Well worth a catch up if you missed it. One of the things she talked about was #JusticeforLB and the responsibility of academics to be scholar activists.

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The disability studies assemblage certainly did, as she highlighted:

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I particularly loved this comment.

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I remain chilled by the obscene focus of Sloven and Oxfordshire County Council on reputation immediately after LB’s death. And the eight months or so it took before his death made it into national news. That ‘random’ people now know what happened can only be a good thing.

Yesterday, a second year learning disability nursing student left a message on the #JusticeforLB facebook page. He wanted us to know how much of an impact LB’s story was having on his, and other students’, education.

comment1

He went on to say:

Nothing could ever make what happened ok. It will always be a tragedy. But LB is shaping the education nurses receive. He is changing the way people work who have been nurses for years, and most important of all, LB is making the lives of other people safer but ensuring they get the care and support they need.

[Sob]. Spot on. Nothing can make it ok. And I so agree about the impact and change. I’m not surprised in some ways. I mean, remarkable campaign magic has included walking a cardboard bus 100 miles along the Camino de Santiago in memory of LB, Danny Tozer, Thomas Rawnsley and others. In the past few years, we’ve collectively managed to prise open a [new?] space for the scrutiny of, and engagement with, preventable deaths (and, hopefully, non lives) of learning disabled people. l1025096Sadly, this focus is not replicated among relevant health and social care bods. We need no more evidence to know that it’s time to properly address and act on the barbaric and inhumane treatment of certain people in the UK. The CQC swerved from this opportunity with their recent deaths review. There seems little effective action from other parts of the NHS (or social care). Just the inevitable, systemic compromise as always. With nothing inevitable about it.

Anyway, here’s to Prof Runswick-Cole, scholar activism and a new generation of brilliantly enlightened nurses. We salute you.

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Reclaiming mother blame…

Revisiting the mother blame stuff again this weekend. For a mix of personal and academic reasons. On a fairly superficial first trawl (that is, the stuff immediately to hand) I came up with 17 statements explicitly blaming me in various ways for what happened.

I’m trying to work out some way of presenting these words creatively as the words themselves seem to lose meaning. This has involved some fairly absorbing messing around which is quite empowering. Cut and pasting, drawing pictures, stretching and recreating text. It unexpectedly allows a reclaiming of the statements and some power to subvert them. They are no longer the blunt and unthinking (at best) [cruel] things health and social care professionals have said about me (or so many other mothers/parents).

These things can’t be said about families/patients/people without us appropriating the words. And doing what we want with them. Who knows. This may make it less likely that ‘professionals’ thoughtlessly regurgitate them in future.

Revisiting these statements, the horror remains as raw. The pain and rage they cause untempered. I still cannot understand how anyone involved in LB’s death (and most of these 17 statements were made post publication of the Verita review which clearly stated LB’s death was preventable) can possibly think blaming his mum is, in anyway, acceptable. Even if you’d met me (I’ve met three of the people who made the statements so far uncovered) and I was/am the nightmare portrayed, this has nothing whatsoever to do with the health and social non care provided to LB. Even if I was/am a combo of May and Cameron, with a dose of Farage, Trump, Muntz from UP, Gove and Nasty Nick from vintage Big Brother, LB had a right to good and appropriate health and social care. Simple as…

[I can’t  believe I’m actually typing these words but given the persistence of health and social care inequalities, I just despair when I think of how many other people/families must have fallen foul of arrogant, ignorant, judgemental, incompetent, myopic, point scoring, thoughtless professionals with way too much power in their grubby paws.]

I’m left, on first reflections of this mother blame trawl, partly focusing on who said these things. Sloven and Oxfordshire County Council peeps (and I would assume private providers if relevant). But more importantly, those who didn’t say anything in response to them. These statements are not made in a vacuum. They are shared, agreed and circulated, either by email, in reports, letters and so on. The various Freedom of Information and Subject Access Requests that accompanied them revealed no countering, reflection or challenge. This bile is accepted without challenge. No whiff of this:

incredulity

Mother blame remains live and kicking. I can only think it’s up to us to start reclaiming it.

And for those who should know better but clearly don’t, some baby steps to more humane engagement:

  1. First and foremost, remember that a person has died a preventable death. They have died and they shouldn’t have. [Howl]
  2. Try to imagine (and keep imagining) what this must feel like for those who loved them. [Imagining it happened to someone you love is a very basic step here.]
  3. When you receive any documentation about this person’s death (emails, letters, draft reports, briefings), sitting in meetings when this is discussed, or chatting over the photocopier, keep remembering this is a person. A person who shouldn’t have died [Revisit step 2].
  4. Develop a careful close reading of any health and social care missives about the unexpected or preventable deaths of people in health or social care. Learn to identify/recognise typically defensive, over the top, and cruel blameworthy statements about these deaths and call them out for what they are.
  5. Refuse to be party to the callous, inhumane and brutal annihilation of family concerns.

Basically. Just be human.

Johnny Rotten and the legitimacy of anger

Rich met me at the bus stop after work yesterday. I was feeling a bit low. We wandered home across the London Road.

“You seem a bit despondent…”
“Yeah. I am. Fed up with raging. And the continued shite that just doesn’t change. Not sure I can bear another year of being so angry... I’m weary of being constantly angry.”
“That’s what happens.”
“What?”
“People get worn out. They stop being angry. But it’s right to be angry. Anger drives a refusal to accept the low bar, the unacceptable. It drives action and critical engagement. Without it, issues are reduced to vague problems too easily dismissed.”
“Hmm…”
“Like Johnny Rotten said, anger is an energy…”

Minutes after getting in, an old mate turned unexpectedly. Her son a year or so older than LB. We had a catch up over mugs of tea and a chunk of Christmas cake. She filled me in on the horror that has been her family’s recent experiences of adult services. Not a pretty story. But it so rarely is. We reflected on the way in which 18+ years of loving and bringing up our kids (along with their sisters/brothers) can be summarily dismissed or problematised by health and social care (with the eye watering irony they offer nothing in its place). The misuse of power and erasure of love and more (the right words don’t exist) too often, just extraordinary.

Before she left, she said;

Do you remember when N and LB were young? And we were so optimistic about the future…

Blimey. I’d forgotten. We were. There was a group of us parents. A right old bunch of budding agitators/activists [just mums really…] All with kids the same sort of age. So utterly convinced we could change what we thought was an already changing world to create rightful space for our kids. To live the lives other people lived. I was shocked to remember this, and that I’d forgotten.

Later, one of LB’s school mates posted two photos on Facebook from years ago. LB was sitting among the small group of kids. He looked so chilled in one and smiling, as he saw the camera, in the other. It was clearly before the fake, fixed cheesy Wallace grin period which lasted a good year or so. Until my relentless photo taking became commonplace again.

Rich is right. Anger is necessary. Or you get sucked into the malaise that is the myriad words/excuses/bullshit/reviews and recommendations that health and social care bods endlessly come up with. Non existent change… what’s about to happen. And never does. At best, a kind of hope soup. That never leaves the kitchen. And feeds no one but the cook.

So 2017. Another year. With anger. And focus on brilliance. The remarkable. And humour. That rightful space is still there, somewhere. We just have to collectively, and persistently, nudge the crap out of the way. And never stop saying this is simply unacceptable.

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Bindman’s published their first ever annual review today.

Goggles, faeces, pricks and shoes

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Oh dear. My pre-Crimbo sunshine has gone with the advent of 2017. Waiting for accountability still. Some random thoughts and reflections here. Apologies for any repetition. We’re getting mighty weary waiting. (Actually worse than weary, but there you go.)

First, a brief recap of some very key points:

2017

 

If someone told me back in the day we’d still be waiting for accountability in 2017 I’d have refused to believe it. We’re talking about the NHS, for goodness sake. Of course it wouldn’t take years…

Such naivety.

Like many other families, we’ve been consigned to a half life (at best) since LB’s death. Forced to ferociously police and push for interminably slow, and too often reluctant, processes to grind on. Fun, the small stuff in life, largely shelved. Work a distraction rather than the focus it used to be. Our lives have been transformed/brutalised because LB was not seen as fully human in life or death. And because he died in NHS care.

I was having a twitter exchange about patient safety/bereaved families the other day with a well known and influential GP. S/he refused to listen but tweeted a cloying ‘If you prick us we bleed…‘ Gordon Bennett. I was quite proud I wandered away from that exchange with no whiff of a swear or ten.

The comment sheds a bit of light though… About senior health and social care bods who seem to be pathologically unable to put themselves anywhere near the shoes of bereaved families. People so firmly focused on their own shoes (careers, status and the like) with the coatings of arrogance (and sometimes immaturity?) that seem to come as a perk of these positions.  People with the power to both discredit and further alienate families pushed to extremes through the heady combination of grief and injustice. People who should, really, know better. And do better.

Here’s a thought for the new year. Why not ditch those goggles, park your shoes to one side for a bit and give what happened to LB, and others, proper scrutiny and attention. Read the extraordinary and repeated unwriting of scandals, the limp dicked excuses and half baked non explanations/obfuscation in statements, reports and reviews. Look at the ridiculous time that’s taken to never get anywhere. Stop worrying about pricks and try to imagine what it must be like to endure life after the preventable death of beloved family members in NHS care. A particular hell with no end in sight. It may well be a cathartic experience. You never know.

It certainly can’t hurt.

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Raising a large glass of something…

Received a lovely Crimbo email yesterday which made me – blinking back those pesky tears – think, yep. We’ve rocked this gig. All of us. Here’s an extract from the email and some ‘highlights’ of the year:

I hope you all get a chance to reflect on your achievements this year:

  • real justice for Connor – forcing the NHS to acknowledge their failings and removing the CEO who set the culture that created so many problems for your family;
  • the prospect of real, meaningful change for so many other people within the NHS, in particular the families who’ll now expect so much more from the health service;
  • a new (albeit extremely belated) conversation about the lives of people with learning disabilities, with at least a path being set for how they can get closer to being treated with equality and respect.

There are undoubtedly many battles you’ll still want to fight, and plenty of people who need you to fight for them.  But I hope that over a large glass of something, you appreciate that you really, really are achieving Justice for Laughing Boy.

Jan: Campaigners and the gingers attend the Sloven Board meeting.
Feb: Jeremy Hunt meeting with Rich, Deb Coles and Andrew Smith, MP.
Mar: 12 Angry Women, Brighton, featuring ‘A Mother’s Song’ by Edana Minghella.
Apr: Mike Petter, Sloven board chair resigns; Simon Hattenstone wrote about LB in the Guardian mag; the CQC issue another warning notice to Sloven; revelations of Sloven financial irregularities.
May: Rebel governors meeting
Jun: Performance of A Child of Our Time, Warwick University; debate about Sloven governance in the House of Commons led by Suella Fernandes.
Jul: Talentworks  ‘Going Viral’ and exec salaries scandals hit the news.
Aug: Katrina Percy steps down from CEO into a made up post on the same salary.
Sept: BBC air Broken Trust, about Sloven failings; Tim Smart, interim Board Chair, resigns; Chris Martin removes the Talentworks website and pulls out of the Sloven contract.
Oct: Katrina Percy  resigns with a £250k pay off. The made up post remains unfilled; #JusticeforLB, Deb Coles and Charlotte HaworthHird win a Liberty Human Rights award.
Oct-Nov: #CaminoLB wondrousness.
Dec: Publication of the CQC Deaths Review; #JusticeforLB exhibition and day of celebration, Aviles, Spain; the GMC refer LB’s consultant to tribunal; the Health and Safety Executive appoint counsel to get specialist legal advice on complex points of evidence.

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Here’s to LB and all the other dudes who were (and continue to be) let down so badly.