Week 13: What I learned from 10 weeks working in a large disability charity head office #LDWeek15 #107days

This post offers personal reflections about an experience just over two years ago. It is my (George Julian’s) opinion, reflections and memory. I offer it as food for thought for #LDWeek15 as JusticeforLB Week 13 continues to explore whether charities are part of the problem.

This post is not an attack on all (or any) charities for an attack’s sake; it is not fiction or exaggerated; it does not question the intention of the many, many excellent people who choose to work for a charity, although it does question the blanket assumption that all who do are quasi saints! I’ll come to that point.

My experience

After eight years working in a (very) small national organisation, trying to make a difference to people’s lives within many constraints, not least working underneath the umbrella of a very confused, multi-purpose charity, it was with joy in my heart and a spring in my step that I pitched up for the first day of a maternity cover post in the (self-named) leading learning disability charity in the UK. I was due to hold the position of Head of Research and Impact, a perfect match for my skillset and professional expertise and qualifications. Having completed a PhD looking at the education of profoundly disabled children over a decade previously, I was delighted to return to the learning disability arena and confident with a focus on research and impact had a contribution to make.

My experience was short lived however and I left after 10 weeks. There were many reasons for this, including large scale restructuring within the organisation and my complete disillusion with what I found, compared to what I’d expected!! The thoughts that follow have percolated over the last two years and I offer them now for debate and discussion.

I have written a series of general statements that emerged from my experience, I’d welcome your contributions and comments and would love to receive examples of where my generalisations are misguided, I genuinely hope a lot of them are.

1) It is incredibly difficult to critique a charity I’m not sure whether this is a uniquely British stiff upper lip, terribly polite, hold our resolve thang, but it seems to be incredibly difficult to in any way to critique the work of a charity. Invariably it is met with at least some suggestion or kick back that you’re somehow a) being unfair b) denigrating the brilliant people who choose to work for charities c) are unaware of their exceptional work and so on, and so on.

2) It is also difficult to be a dissenting voice within a charity I suspect for some similar cultural reasons as are at play in the first point, together with an unhealthy dose of confirmation bias, it is hard to truly challenge within the hallowed walls of head office. A relatively new CEO and a senior management team looking to assert themselves all too readily overlook those within their teams, rushing to squash autonomy in favour of compliant flag wavers for their latest strategic plan.

3) Not everyone who works in a charity does so because they believe in the charitable cause, nor are they necessarily exceptional at their job Pretty much like any organisation, there are good and bad within charities. A quick glance at charity accounts will show that this doesn’t always come without a cost, seemingly huge amounts of charitable funds are spent on redundancy or termination payments.

4) Not everyone in a charity is poorly paid I’m not for a minute suggesting that they should be either, however, if your CEO is taking home over £100k I’d sort of expect them to be bloody good at their jobs, and at the very least for the charity to be effective and innovative.

To give you some perspective on this, I had a quick look at Mencap’s 2014 Annual Accounts and can share that their senior management team salaries minus pension contributions (I assume it is them given they’re all on £60k plus) are as follows:

£60–70k: 8 staff members

£70-80k: 6 staff members

£80-90k: 2 staff members

£90-100k: 3 staff members

£100-110k: 1 staff member

and presumably the CEO, one staff member, takes home £130-140k.

These are not insignificant figures, and this total spend on large salaries, sits alongside 7 staff members who took home over £60k when including their termination payments (1x 60-70k, 3x 70-80k, 2x 90-100k and 1x 110-120k).

5) Excessive staff turnover or excessive staff retention – pick your poison The uninitiated may look at the salaries and termination payments above and consider 2014 an unusual year, a new CEO obviously changed the strategy at Mencap.

However a tiny dig beneath the accounts surface reveals that in addition to the 7 staff members taking home over £60k including payments when their contracts were terminated in 2014, there were 5 in 2013, 13 in 2012 and 11 in 2011.

If we assume a mid range payment in the bands offered that’s £595,000 in 2014, £615,000 in 2013, £960,000 in 2012 and £975,000 in 2011.

How can any organisation defend such waste?

6) Large, national, leading charities are no more organised, slick/devoted/competent than many smaller charities or organisations with tiny staff teams Perhaps the biggest shock for me on arrival in head office was how inefficient, uncoordinated and generally uninspiring life was. I’d fantasised about a large charity being a slick operating unit, about IT services being efficient, strategies and action plans being in place, coherent strategy and measurement processes. Who knows, maybe it is unrecognisable in its progress over the last two years, but my experience was of a chaotic and confused organisation that struggled to understand what its priorities were, never mind any of the rest.

7) Business and turnover are key In one way you could argue this is par for the course, a sign of our times, inevitable – that business should dominate charitable activity. Indeed, given the salaries paid for the management team, you’d almost welcome efficient and competent business drivers underpinning all activity, that could then ultimately improve the lives of the people it is meant to support. The reality in my experience was that money talked, anything could be written into a funding bid to secure funds, that was more important than due diligence of the activity that followed. I suspect my experience was in no way unique but it appeared that on too many levels the money tail was wagging the dog; projects and bids were devised to meet funding calls, strategic plans (where they existed) were adapted and tweaked to meet a newly funded ‘need’.

I’m no business expert, it’s not for me to say whether this is an appropriate course of action or not, I’ll leave you to make your own mind up. That said, if you have no vision, or if your vision is embedded wherever the latest pot of money is, rather than where your end beneficiaries are, you probably shouldn’t call yourself a charity!

8) You can hide anything you like with ‘good’ reporting and messaging Call me naïve but I desperately wanted to believe that the focus would be on the charitable aims I’d researched before deciding whether to take the post; campaigning, improving people’s lives, supporting learning disabled people – what’s not to like?

What I observed was that reputation was key; managing the message was as important (if not more important) then delivering on quality or improvements for learning disabled people.

If any charity believe in what they stand for, then just get on and do what you’re aiming for. For example, if your focus is on supporting learning disabled people to get work, employ them. Not one or two tokenistic people who can be sat on the reception desk and brought out for public events, I mean really employ them. If you can’t manage to walk the walk within your own organisation how the hell do you expect the rest of society to? Which leads me to my penultimate observation…

9) Beware of values that are for wallpaper not for living by! Everywhere I looked during those ten weeks I’d see value statements, they were stuck on the walls, in the lift, on the screensaver that flickered across your laptop; bold, ambitious, optimistic values, but to be honest that’s where they mostly stayed. If you have to plaster your values everywhere then they clearly aren’t embedded within your organisation.

My experience, and I’d go as far as to say those of many other colleagues there at that time, did not reflect the values being espoused. If you can’t treat your staff well, if you can’t treat the beneficiaries of your charity well, if you can’t actually make progress to what you’ve been talking about for years, maybe it’s time to shut up shop, redistribute the wealth and let some others have a go.

10) Stop speaking for – give up the power I’m not sure how anyone can be the ‘voice of’ or how it helps. Maybe it’s time to stop speaking for and just give over the power.

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Week 10: 1 in 4 MPs contacted re #LBBill, still 75% to go #107days

Wow, what a weekend of #bankholidayactivism. Ever since the #JusticeforLB campaign evolved/emerged/was born (still not sure which of these is most true) we’ve been blown away by the responsiveness of people. This weekend proved no exception and we’re delighted to now share that slightly over 25% of all MPs in Westminster have been contacted about the #LBBill.

Seriously, that’s 1 in 4 who will know about LB, who will hear about his entirely preventable death, and who hopefully will read up on the #LBBill and lend their support to it. The responses from MPs on twitter and email has been overwhelmingly positive, where they’ve had a chance to engage, and let’s be honest MPs are allowed time off too and given it was a bank holiday and the start of half term for most people, we really didn’t expect to have had pretty much any response.

LBBillContacted_25%MPs

We’re not getting complacent though. As wonderful as it is to see that all MPs in Norfolk and Devon have heard about the #LBBill there are still whole swathes of white on our map where people don’t yet know.

So this is a quick thank you, a mini celebration and a call for further action.

If you are reading this, and you care about disabled people, please take action to contact your own MP and let others know about the Bill and what it proposes. You can read Sara’s post from yesterday for more on what difference the LBBill would have made to LB – short answer is he would probably still be alive today, playing with his footy guys and chatting away to Chunky Stan.

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We need to make sure no other family suffer the same loss that LB’s have, that no more disabled people are denied what are essentially very basic human rights. So please take action, we need to give the #LBBill every chance to be heard in Parliament.

Thank you all.

Week 9: The CEO – The Mystery Cat #107days

As Week 9, which has focused on Art and Activism draws to a close, we’ve had an excellent piece of poetry, an adaption of T.S.Eliot’s Macavity (you can read the original here) shared with us. The author/adapter wishes to remain anonymous, but we have their agreement to share this wondrous poem with you all. The photo attached to this post is one of Jack’s cats, that were made and sold to raise money for LB’s Fighting Fund by Jack. You can read more about that in this post from Day 97 last year. Now though, we give you 

The CEO: The Mystery Cat

The CEO’s a Mystery Cat: she’s called the Hidden Claw
For she’s the master criminal who can defy the Law.
She’s the bafflement of Monitor, the CQC’s despair:
For when they reach the scene of crime: the CEO’s not there!

The CEO, the CEO, there’s no-one like the CEO,
She’s broken every human law, she breaks the law like billyo.
Her powers of dissimulation would make an MP stare,
And when you reach the scene of crime – the CEO’s not there!
You may seek her in the unit, you may look up in the air-
But I tell you once and once again, the CEO’s not there!

The CEO’s an elusive bod, she’s very tall and thin;
You would know her if you saw her, for her eyes are sunken in.
Her brow is smooth with botox, her hair has shiny sheen:
Her coat is glossy with expense, her grin in public’s seen.
She sways her head from side to side, with movement like a snake;
And when you think she’s fast asleep, she’s always wide awake.

The CEO, the CEO, there’s no-one like the CEO,
For she’s a fiend in suited shape, to duty she says cheerio.
You may read her in a ghostwrit blog, for which she has much flair-
But when a crime’s discovered, then the CEO’s not there!

She’s outwardly respectable (they say she cheats at cards).
And her foot prints are not found in any file of Scotland Yard’s.
And when reserves are looted, and acquired estate is rifled,
Or when the staff are missing, and the truth’s again been stifled,
Or the ligatures are present, and the unit’s past repair
Ay, there’s the wonder of the thing! The CEO’s not there!

And when the investigation finds the records gone astray,
Or commissioners lose all integrity along the way,
There may be some scrap of paper from an FOI request
But it’s useless to investigate, at evasion she’s the best!
And when the crime has been disclosed, the regulators say:
“It must have been the CEO!” – but she’s a mile away.
You’ll be sure to find her ‘leading’, or a-licking of her thumbs,
On engaged in doing complicated renumeration sums.

The CEO, the CEO, defies the laws of gravity,
There never was a cat of such deceitfulness and suavity.
She always has an alibi, and one or two to spare:
At whatever time the deed took place – THE CEO WASN’T THERE!
And they say that all the cats whose wicked deeds are widely known
(I might mention NAME REDACTED, I might mention LAWYER, PHONE!)
Are nothing more than agents for the cat who all the time
Just controls the operations: Viral Leader cat of crime!

Day97Cat

Week 9: Art and activism #107days

We start with an apology that Week 9 is having its first blog on a Friday! An all time delayed performance, even for us, however that’s partly because we’ve been out on the campaign trail this week and doing ‘art and activism’ rather than writing about it! Before you delve in to this post we’d like to remind you that Live at LICA have their Family and Community Day tomorrow (Sat 23 May) so pop along to see the #JusticeforLB artwork, join the pop-up picnic and survey the quilt in all it’s majesty. For now, Sara has blogged about the brilliance that was Monday:

On Monday, as many of you will know, the Sparrowhawk Art exhibition took place at the Peter Scott Gallery, Lancaster University as part of their Open 2015 event. Parcels of #JusticeforLB art were sent up north over the past few weeks to create both an exhibition and a political space. Richard Smith, the gallery curator, described what underpins Open 2015;

‘We feel an art centre should be communal and tell us who we are and who we want to be; if not a social movement, it should at least provide a deeper awareness and sense of place. It should have a design that can situate all disciplines together in the search for knowledge and understanding and have at its core the unique process and language of art, which is able to articulate things that cannot be expressed otherwise. During OPEN 2015 we’ll start this journey, exploring what an art centre could be and what it should do’

Sparrowhawk Art was clearly in the right space.

One thing I particularly loved was the way in which the exhibition was created during the exhibition. It started at 10am and we pitched up everything was pretty much on the floor or in boxes (other than the quilt that was being displayed for the month). We became gallery helpers, sticking up the remarkable pictures of the Justice flag at Glastonbury, guillotining a copy of Jeremy Hunt’s letter, thinking of ways of displaying the Justice cardboard (but deftly reinforced) bus and, for Janet Read, doing some on the spot stitching repairs to the quilt.

It was amazing.

Late morning there was wondrous excitement as the Guardian online gallery was shared. So moving, so stunning, so remarkable that the artwork has been created spontaneously and created with love and care.

This also stood out among the gallery team. They were accommodating, sensitive and handled every item with respect. Later, during the panel, Chris Hatton reflected on how unusual this was to witness. Learning disabled people are not typically afforded such respect.

The panel

At 3pm, the panel convened, chaired by Chris Hatton and consisting of Graham Shellard (My Life My Choice), George Julian (#JusticeforLB), Janet Read (Chief Quilter), Dominic Slowie (NHS England) and Imogen Tyler (University of Lancaster).

Dominic (via a video link) described how “the pain, anger and frustration has been reborn into something that’s captured the minds and hearts of people” and how the campaign has grasped practical projects that can make a difference. George emphasised how the campaign is about everyone and how it’s demonstrated that people do care. Graham said that My Life My Choice “knew what it was like to be someone with a learning disability and have something happen to you”. He talked about some of the activities he’s involved in and announced that LB had been made an honorary DJ at Sting Radio. Janet described the campaign as a choir without constraint; people lending an ear and pitching in together. “A talented, unconditioned choir of excellence!” She described how the quilt not only records the terrible things that happened to LB but also his life and his personality. Finally, Imogen talked movingly and powerfully about her cousin Rachel who loved cherry coke and cheesy wotsits. She ended by talking about an event at Inclusion Scotland where George Lamb announced “We are the revolting subjects and we are here to revolt”.

The discussion involved powerful stories from ‘just two mums’ as the founders of Unique Kidz and Co described themselves, as well as reflections about the role of social work.

It was powerful, moving, emotional and pretty humbling (not sure of the right word here) to listen to this, surrounded by LB’s artwork. I think Imogen summed it up perfectly.

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Thank you to Chris Hatton for organising so seamlessly, and to LICA for hosting with generosity and welcome.

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Week 6: A different kind of revolution? #107days

Week 6 is exploring the question of whether we need another inquiry into learning disability ‘care’. Mark Brown has written the following guest blog, related to this question, calling for different kind of revolution.

I got a tweet a couple of nights ago. It was a great blog post from Chris Hatton called The Four Staplers of the Apocalypse. In it he argues that David Graeber‘s theories on bureaucracy can be applied to the way in which the state interacts with the families of people with learning difficulties. When I first read it I totally agreed with him. For so many of us the state and its systems are oppressive. It seems to exist for its own ends and there is a tacit acknowledgement on the part of most of us, that challenging it, is likely to end badly for us.

I agreed with all of that, but later I was kind of disappointed. Not with the essay itself but with how it left me. The sentence:

the increasing stranglehold of bureaucracy over all aspects of our lives has become almost total, such that any alternative to bureaucratic ways of organising society is literally impossible to imagine

hung over me for much of the day. As oppressive in its pessimism as the state that gives rise to it. And although Chris rightly cites the JusticeforLB campaign and Human Rights Legislation as reasons for optimism he loses me in the final paragraph:

Finally, I have hope in those professionals and organisations that are trying to reconnect to the human, based on human rights principles. Can organisations supporting people with learning disabilities and families operate by engaging people honestly, as human beings, without the threat of violence lurking behind inhuman rules that are impossible to fulfil? My hopeful answer is yes.

The issue is not that there aren’t professionals and organisations out there struggling to reconnect with the human. It’s that without our help they can’t, because practitioners with integrity are almost as much victims of the state and its bureaucracy as we are. It oppresses any who challenge it without discrimination. I don’t believe it’s time for hope. I think it’s time for action.

So how do we change it? I totally agree with Chris that the fundamental building blocks of any change can be found in the JusticeforLB Campaign and in the existing Human Rights Legislation. But as things stand the ability of both to bring about systematic change is limited by the inertia of the system and its ability to produce and control what we know about how it’s actually performing.

Or to put that in plain English, they get away with doing things as badly as they do because they have control of what we know. They decide what research to fund. They decide what to measure and perhaps more importantly what not to measure. They also marginalise and stigmatise those who challenge them. For me the principal purposes of a bureaucracy are to sustain the illusion of competence when none exists and to neutralise individuals who challenge it.

And perhaps that’s where the beginnings of a solution lies. What would happen if we knew exactly how things were for families across the country? What if we knew how many Carers hadn’t had a Carers Assessment? What if we knew how many local authorities weren’t meeting their obligations under the Care Act and Children and Families Act? What if we ripped away their ability to pretend that things are fine? Then rather than using the law to protect individual people and their families, maybe then we can use it to protect whole communities.

DataRevolution

A couple years ago this idea would have been absurd. But changes in social media and the web mean that our ability to develop this kind of data has actually become relatively easy. We can build on the networks that already exist, we can share experiences and create user led evaluations of local and national service provision, in short we can break their institutional monopoly on data and we can undermine their ability to isolate.

That may not sound that sexy and as revolutionary slogans go “power to the people – develop data” probably doesn’t represent one of the pinnacles of revolutionary rhetoric. But it would give us as a community and our allies, an enormously powerful weapon in our struggles against the inertia of the state and its bureaucracy. Because ultimately their legitimacy is based upon their bureaucratic control of our voices and their ability to convince the wider world that everything is just fine.

Like Chris I have hope in the ability of some practitioners to transform the system but I have much more hope in the strength of our community and the transformational power of our experiences. Personally I think it’s time for a different kind of revolution.

Week 5: Censored #107days

We couldn’t let quilt week pass without squeezing in a post about the patch that didn’t make it. Ally Rogers, LB’s cousin, has been a quiet constant of the #JusticeforLB campaign, sending witty tweets and making acerbic observations, that have led to many a dark chuckle in the Justice Shed. Ally is currently completing her undergraduate dissertation, which is due in next week. With a working title of How to Make Friends and Impress People: A Case Study (to be replaced with something more yawningly academic in due course) Ally is conducting a narrative analysis of Sloven’s communications around LB’s ‘care’ and death. 12,000 words looking at the texts on blogs and Sloven’s public statement on their website, focusing on assigned and hidden responsibility for actions. Legend.

When it came to stitching a patch for the Justice Quilt, Ally went for subversive LB style. Committing to fabric LB’s bigoted tendencies, as captured in Sara’s blog post of 2011.

DisabledsPatch

The arrival of this patch into the quilt makers pile posed somewhat of a dilemma for Janet and gang. Was such a blatant statement appropriate for the Justice Quilt? Would it make sense without context? Janet, Janis, Margaret and Jean discussed what to do amongst themselves and took advice from others.

After much careful and sensitive deliberation by the quilting team it was decided not to include the patch in the quilt. A decision not taken lightly.

Instead it proudly sits on the wall of Sara and Rich’s kitchen, as a brilliant conversation starter and chuckle inducer.

Here’s to LB, Ally and all the subversive ones.

Week 5: Quilt Graffiti #107days

This week of #107days is focused on the amazing Justice Quilt which is coming to the end of its residency at People’s History Museum, Manchester.

Chalkboard3

Jack, who took the awesome photos in the last post, wrote us a guest post about his visit to see it at the weekend:

I am truly honoured to have my photos on here. When we got there on Saturday, first of all I was trying to capture the quilt from every possible angle I could find (Sara if you want about 30 more photos of the exact same thing but with more blur, random building structures, people in the way and poor lighting, I’ve got you covered).

Then I began to look properly, still taking photos of course, but looking at each individual patch.

Ceri, Phil and I were there pointing out all the incredible intricate designs for about the next half hour and then when we went upstairs (I was looking for more angles) we found that we’d just missed another load of amazing ones! dude. was my first favourite, although I ended up with about half the quilt as my favourite in the end.

I think that’s what struck me the most when I was there, this absolutely huge quilt, full of so many different wonderful messages and memories. If I could stitch, I think I would’ve liked to have done one like dude. Sara, you’re one of the few people I know that still says dude and I think I associate it with you just as much as I do the blog!

For me that’s a happy thought and a sad thought. If I’m honest, I don’t read the blog as much as I used to. When I think of the blog I think of the fantastic stories I read when Rosie first told me about the blog one night in first year (2011). (I’m paraphrasing but) She described it as an embarrassingly great selection of stories from home that she looked at whenever she felt homesick or upset. A few months later I was trusted with the URL, read a few stories (Johnny English cave story remains a firm favourite) and signed up for emails much to Rosie’s dismay! I was experiencing the more entertaining part of the life of the dude in real time now, but I never met the dude, so I associate dude. with you and the blog. Even when I read the stories again now I’ll hear the TO FANCY OR NOT TO FANCY? THAT IS THE QUESTION in Tom’s voice (it does sound like something he’d say). I’ve never heard Connor’s voice, I don’t know what it sounds like.

But then again that’s something I find strangely wonderful. Having been around so much since his death, heard so many stories about what a caring, kind and funny young man he was (sometimes I’ll even work them into the conversation to get Rosie to re-tell them, sshh!) and reading them myself before this all happened I feel like I know him despite all this. I think that’s testament to all of you and I’m sure many of the people who contributed to the quilt or to #JusticeforLB or any of this without ever meeting Connor, just like me, feel the same.

I often think about how I nearly met Connor. If I’d been friends with Rosie just a few months earlier in first year, maybe even a few weeks earlier then I may have come down with Ceri and the other Manchester lot and met him during Easter 2012. Later on Saturday Ceri was telling me about how when she’d met him that Easter he was mostly watching videos of trucks on youtube and listening to techno music, from what I know I’d say she had a pretty classic experience of Connor, an experience she described as pretty cool. I’d say she was probably right.

But then I think about how that thought process is utterly ridiculous.

I should have met Connor in August 2013 when I was going to visit Rosie.

When I brought you lemon cake on the 8th of July 2013, he should have had a slice, or ten.

I should know what he sounds like.

I should be reading hilarious stories that come into my inbox every few weeks.

I should have my own stories to tell other people.

This should never have happened.

When we first saw the quilt Ceri pointed out the teardrop with HOWL written in it, she told me how whenever she sees a mydaftlife post with a howl caption, she feels compelled to read it. When we went upstairs Ceri saw a chalkboard supposed to be a discussion board about whether or not Nigel Farage and other politicians have right to a private life. Having seen the quilt she felt compelled to write #JUSTICEFORLB all over it instead.

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I saw the quilt and felt compelled to write Fuck Southern Health.

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Week 2: Inquest inequalities #107days

If someone dies unexpectedly in detention (in prison, immigration services, police custody or under mental health sectioning) there is a legal requirement that the coroner must hold an inquest. An inquest is a public investigation to establish who the person was, and where, when and how they died. If someone dies in the care of the state, then article 2 of the European Convention on Human rights (the right to life) is evoked, and the coroner may decided to hold an article 2 inquest. This is more thorough and far reaching than inquests into deaths that do not engage this duty.

For further info, INQUEST have thorough info and excellent caseworkers to provide advice.

This all seems fairly straightforward but in practice is a lot murkier and difficult for families to negotiate. Here are some of the issues that we’ve learned over the past year or so.

1. The NHS can use public funding to pay for legal representation at inquests

Astonishingly, NHS trusts are able to fund expert legal teams while families can only rarely access exceptional funding to cover their costs. The criteria for exceptional funding is enormously complicated and confusing. The cost of legal representation is not only for attendance at the inquest (and pre-inquest review meetings) but involves a large amount of preparatory work. Our solicitor has read through extensive documentation and records, identified issues to be brought to the attention of the coroner, written submissions, created a witness list and repeatedly requested missing documentation from Southern Health. So far, this has cost around £14,000.

Last month a High Court ruling in a case brought by Joanna Letts (who was trying to establish whether her brother’s death was related to hospital failings) says official guidance on whether to provide legal aid has been ‘misleading and inaccurate’.

2. Inquests are supposed to be inquisitorial and not adversarial

In practice, NHS trusts may be very keen to narrow the focus of inquests to reduce potential damage to reputation and avoid negative findings by the coroner. Sloven had an expert barrister in representing the police and medical defence organisations at the first pre-inquest review meeting. He argued that an article 2 inquest was not necessary because the article 2 procedural obligations were met by the various ongoing investigations relating to LB’s death. He also argued the conditions for having a jury were not met because drowning was not an ‘unnatural’ death. The Minister of State for Justice and Civil Liberties, Simon Hughes, argues that families do not need legal representation at inquests. The coroner should make the process understandable. This is clearly nonsensical given the legal arguments banging back and forth between the Sloven legal team and ours.

3. Witness coaching

Witness coaching is clearly common at inquests. Rosi Reed documented the obvious coaching Sloven employees had undergone at Nico’s recent inquest. There have also been repeated questions about the behaviour of staff at Joshua Titcombe’s inquest, and the common view is that staff were clearly coached. Indeed, Dr Bill Kirkup in his investigation into what happened at Morecambe Bay had this to say:

We also found evidence of inappropriate distortion of the process of preparation for an inquest, with circulation of what we could only describe as ‘model answers’. Central to this was the conflict of roles of one individual who inappropriately combined the functions of senior midwife, maternity risk manager, supervisor of midwives and staff representative. We make no criticism of staff for individual errors, which, for the most part, happen despite their best efforts and are found in all healthcare systems. Where individuals collude in concealing the truth of what has happened, however, their behaviour is inexcusable, as well as unprofessional.

Kirkup’s report had 44 recommendations for improvements, number 30 is as follows:

30. A national protocol should be drawn up setting out the duties of all Trusts and their staff in relation to inquests. This should include, but not be limited to, the avoidance of attempts to ‘fend off’ inquests, a mandatory requirement not to coach staff or provide ‘model answers’, the need to avoid collusion between staff on lines to take, and the inappropriateness of relying on coronial processes or expert opinions provided to coroners to substitute for incident investigation. Action: NHS England, the Care Quality Commission.

It is explicitly clear that if a family hopes to establish what actually happened to their loved one then a legal team with expertise in getting beyond learned statements is necessary.

Yesterday the Public Administration Select Committee of the House of Commons published a report Investigating clinical incidents in the NHS. You can read the JusticeforLB response to it here, while we welcome it’s recommendations, we do not think they go far enough.

It is crystal clear that more reform is needed of the inquest system in the UK. The system is archaic and there is no parity of arms.

Week 1: Here we go again #107days

It is with heavy hearts that we are back here again for #107days, still campaigning for #JusticeforLB.

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Two years ago today LB was admitted to Slade House, a specialist assessment and treatment unit run by Southern Health NHS Foundation Trust. 107 days later LB died, an entirely preventable death.

Last year we were blown away with the support for #107days, a truly inspirational, crowd-sourced campaign where hundreds of people worked together to support #JusticeforLB and all young dudes. It was our hope a year ago that we could ‘harness the energy, support and outrage’ that emerged in response to LB’s death, to ensure lasting changes and improvements were made. Here’s some of the magic that was #107days

A year on we remain inspired, encouraged and sustained by the wonderful movement of people working for #JusticeforLB, while simultaneously demoralised at the lack of accountability and real progress. That said we are as determined as ever to pursue Justice, and improve life for others. We have a slight change in approach, we’re not offering the days for adoption, instead we are focusing on key themes, one a week, for the next 16 weeks. Four of those 16 weeks will be given over to action weeks, where we’ll collect your ideas and contributions as we collectively work for #JusticeforLB. This will allow us to revisit those of you who participated in #107days the first time round, collect your experience of what impact it had (we’re hoping there was some), and also take new actions together.

The first week of activity will focus on recapping progress over the last year and setting the context of what happened to LB, why it matters, and what you can do to help. Week two will focus on inquests and the inequalities that surround them. The focus of future weeks will be announced in due course.

In keeping with last year’s #107days approach we are retaining two main aims for #107days activity:

1) To raise awareness: to share learning, experience and progress towards #JusticeforLB and improving life for all dudes. Much the same as last year, our success will be down to you all.

2) To raise funds: slight change in focus here, LB’s Fighting Fund has raised £26,410.88, which we hope should be enough to cover legal fees given the arrangements that are in place. However, when we started campaigning we never imagined that a year on we would still have so far to go. Everything we have achieved so far has been thanks to the dedication and donations of volunteers, however there are limits to what we can achieve with no financial resources. Therefore any further donations received will be put towards core funding for the Justice Shed to sustain campaign activity.

We’ll post at least one more blog post over the next week, sharing our progress in more detail. You can follow the blog by subscribing in the top right corner, you can join the discussions on facebook, chat to us on twitter, or drop us an email. We look forward to another joyous and positive #107days, hopefully our last in seeking #JusticeforLB.

Making LB’s Justice Quilt #JusticeforLB

We’ve a guest post today from Janet Read to coincide with the launching of the amazing quilt that emerged from #107days.

I’ve just seen a photograph on Twitter of George Julian taking LB’s Justice Quilt to the Lancaster conference where it will see the light of day in public for the very first time. If you were travelling north by train today and saw someone carrying a very large multi-coloured sausage, it was probably George.

Quilt_train

This reminded me that I’d better get a move-on with the post I promised Sara I’d write about the making of the quilt. I started it the other day but I was feeling a bit inhibited and it all turned out rather stodgy and boring. And the quilt (and the process of making it) is about as far from stodgy and boring as it’s possible to get.

The inhibition came from feeling that it’s hard to write honestly about something I’d had a hand in making, without fretting about looking as if I’m blowing my own trumpet. The thing is, there’s no getting away from the fact that I think the quilt is bloody marvelous and so do the other makers, Janis Firminger, Margaret Taylor and Jean Draper. It ‘s everything we hoped it would be and much, much more besides. It’s given us immense joy every time we’ve worked on it, looked at it and talked about it. We’ve been incredibly moved by it, too. But of course, the whole point is that it wasn’t really down to us at all. The main reason for its magic is that a whole bunch of you people who care about what happened to Connor and who want to change things for other dudes, rose to the occasion and set to. We said that we wanted to make something that reflected the campaign and its mood and energy. Well, you outsider artists sure didn’t need telling twice! The pieces that you sent us to work with were more arresting, inventive, moving, angry, irreverent, colourful, thoughtful, beautiful, affectionate and informed than anything we could have hoped for. They came embroidered, appliqued, crayoned, painted, felt-tipped, crocheted and knitted. They sometimes arrived with apologetic notes saying you hoped they were good enough. Good enough? Yes! Yes! Yes! More than! Every single one!

At the beginning, only Janis, Margaret and I were involved. We consulted Sara and George, did the post, asked people to take part and waited. Would anyone respond and if so, how many? We had no idea. We told ourselves that small could be beautiful but to be honest, ‘LB’s Justice Tea towel’ might have felt a bit of an anti-climax. On the other hand, where would Sara keep something the size of a football pitch? Then the contributions started coming in thick and fast– the patches and the gifts of thread and fabrics. I got the best job of opening the post and keeping tabs on what we’d had. It was so exciting. Apart from the individual contributions, we had the workshop at Cardiff Law School which Lucy Series wrote about on 107 days and the Messy Church in Kent organized by Beckie Whelton, also recorded on 107 days. I didn’t know what Messy Church was but I do now. I can tell you it sounds a whole lot more fun than the Sunday School I went to!

Shortly into the project, Janis, Marg and I found ourselves needing some help. Confession time now: we three are stitchers but we’d never made a quilt before in our lives! Sorry. I can almost hear a sharp intake of breath from all the proper quilters out there because they know better than most that The Great British Bake Off doesn’t have the monopoly on THE TECHNICAL CHALLENGE. So, we asked for a leg up from my big sister Jean whose day job is art textiles and who knows a thing or two about quilting and all sorts of other stuff involving fabric and thread. She loved the idea of the project and was busy stitching patches. After being bombarded daily with beginners’ quilting questions, she offered to join in.

One of the best times (and there were many good ones) was the very first time that we laid out all the patches in the same place. When we stood in front of this vivid mass covering my dining room floor, it took our breath away. We knew quite simply that we had something very special to work with.

And that’s about the top and bottom of it really. The end of May was close of play for contributions but of course, they came in for a while after that. What else would we have expected from a load of stitching rule-breakers? The patches came in all shapes and sizes, too, and were probably the better for it -though I did threaten at one stage, to stitch a patch that said’ Social justice activists can’t measure 4X6 inches’. When all the patches were in, we put the rather complicated jigsaw together ,and spent the summer machining, quilting and hand-stitching The People’s Art Work , as we sometimes called it. The final stitch went in a week ago.

JusticeQuiltfull

I don’t know how many patches there are because every time I started counting, I was distracted by something that I’d not looked at properly before. Living with the quilt has been a pleasure, and running our hands and eyes over your lovely work for the past three months has been an unforgettable experience. We’ve handled it nearly every day and that means that scarcely a day has gone by without our thoughts turning to Connor, his family and the other dudes. We’ve talked about them a lot too. We hope that the quilt will have the same effect on other people when they stand in front of it. Someone asked me last week when we were doing another one and the reply was that we’re not. LB’s Justice Quilt is a one-off for Connor, the dudes, Sara and her family.

Our heartfelt thanks, then, to all you patch-makers, protest stitchers and outsider artists. It ‘s truly brilliant that you created so many strong and beautiful fragments of resistance in response to something so terrible. What gifts you gave!

We couldn’t publish this post without acknowledging ourselves the absolutely phenomenal beauty of the Justice Quilt. There is so much love stitched into the quilt, which somehow perfectly captures the crowdsourced magic of the #107days campaign. The quilt would have certainly been a pile of patches if it wasn’t for the extreme dedication of Janet, Janis, Margaret and Jean, and we will be forever grateful to them for their work.

The quilt is officially being ‘launched’ at the #CEDR14 conference today (10 September 2014) and we will be looking for a number of venues to host the quilt over the next year. Given how delicate it is we don’t want it travelling every week so we’ll be looking for venues that can display the quilt, while also protecting it. If you have contacts in venues, organisations, galleries etc then feel free to leave a comment, drop us a tweet @JusticeforLB or send us an email with your suggestion and we’ll collect them in and make a touring plan. We are really keen that as many people get to see the quilt as possible, so we’ll keep you all posted on these plans.

Thank you to all our patchers, your contribution to bringing JusticeforLB and all young dudes is stitched into the fabric of this campaign.