LBBillContacted_25%MPs

Week 10: 1in 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.

LBChunkyStan

Week 10: LB and the #LBBill #107days

Yesterday’s post has got us off to a fantastic start with telling MPs about the #LBBill, so thanks to all of you for your help with that. Today we’ve a post from Sara reflecting on LB and the #LBBill.

A while back I was asked by a journalist (could have been on BBC Radio but I can’t remember now) if the #LBBill would have made a difference to what happened to LB. I am really not a natural or keen radio or TV interviewee, particularly when it’s to talk about something so horrific, and this question struck me as simply too sad. I fluffed it.

Now it’s time for action with the Bill, it probably is helpful to think through how the proposed changes to the law could have made a difference. [Howl.] First of all, LB should never have been admitted to the unit. If a range of meaningful ‘in-home and community support services’ were available [Clause 1] I don’t think LB would have become so anxious and depressed in the first place. He loved learning to be a mechanic at TRAX. He worked there the day before he died. If there were more opportunities like that and support available to help people access the stuff they want to do (i.e., the stuff that other people just get to do), I’m not sure LB would have got so down. Oxfordshire County Council (OCC) funded support included a 5 day holiday akin to a boot camp with learning outcomes attached to every waking moment that LB hated, and a peer buddy scheme which failed to attract young people and so LB was buddied by someone our age. Simply not good enough.

Once we reached crisis point, Clause 3 would also have prevented LB’s admittance. There was no crisis care. Just a number to call and be told to go to the out of hours GP. The modus operandi, certainly in Oxon but I suspect pretty much everywhere else, is to rely on families to do the graft and when things have escalated way beyond what most people could endure or ever dream of enduring, it’s off to the ATU. Instead of chucking more direct payments (as meaningless as trying to spend drachma in the local pub) and talk of ‘respite at a building with a snooker table’ at families in crisis, the local authority should make sure a suitably trained, experienced, enthusiastic and caring team are on call and available to work with people and their families to try to avoid the need for admittance.

Slightly ironically (and I still don’t really understand this), the commissioners were apparently happy to indefinitely pay £3500 a week for substandard care at STATT. LB had no desire to live anywhere other than home at that point so Clause 2 was less relevant to us.

Clause 4, which is about securing the most appropriate living arrangement, would also have offered LB some protection against what happened. A review of the new ‘living arrangement’ (which we thought was a short term fix) 3 months from the day it commenced would have happened around June 19th. As it was, nothing was done about getting LB out of the unit other than a meeting eventually organised for July 8th (with the pushing of LB’s head teacher despite OCCs grandiose claims to the contrary).

Clause 5 was also less relevant to LB again because he was still at school and should have been living at home. Like most kids do. This clause is very important to those people who are living independently however. Most people have a choice about where they live. It’s astounding really that we’re trying to change the law to protect people from being moved against their wishes.

One of the things #JusticeforLB has achieved is shining a spotlight on the murkiest of practices that continue in health and social care. I was chatting to someone the other day who said they read our posts with a mix of incredulity and horror. That light shining is embedded within the LBBill, particularly in Clause 6 which places a duty on local authorities and the NHS to report annually on all their living arrangement activities (with full disclosure on the when, why and hows involved), and the Secretary of State to summarise these in an annual report. This is bloody brilliant really and I hope, if the Bill becomes law, there is clear and careful scrutiny of this data at both a local and national level. Using lenses with aspiration, imagination and happiness etched in gold around the frames.

Clause 7 involves sensible rewording of the Mental Capacity Act and Clause 8, again sensibly, removes learning disability/autism from the Mental Health Act. Er, because neither are mental health issues. Clause 9 makes sure that despite Clause 8, people can still access mental health services. [I know].

I also love Clause 10 [I love it all really but some bits are stand out stars for me] which is about being open and transparent with the person whose ‘care’ or support this is about. A chewy bit of ‘nothing about us without us’ which is so blinking obvious. Invite people to meetings about them, give them free support to attend, let them respond in whatever form they choose and communicate the decision from the meetings in an accessible form. Bam. As simple as. And shameful it doesn’t already happen often.

LB was only invited to the last 10 minutes of the Care Plan Approach meeting during his 107 days in the unit. He wasn’t told about the weekly meetings or informed of what was said. Despite all the nonsense about making us get his permission to visit him daily, not one member of staff communicated anything meaningful to him about why he was in there. But that was because they didn’t know why he was there and no one bothered to put the support in place to enable him to come home. A situation that would not be possible (or certainly should not be possible) if the law is changed in the way we are proposing.

The Bill finishes with a bit of welly wielding stating how the Bill will be enacted [Clause 11] because there ain’t no point in changing the law if the law ain’t followed. So that’s it. A more coherent answer to the journalist.

And the short version:

“Yes. LB would probably be lying on the floor right now, playing with his footy guys and chattering away to Chunky Stan.”

Please support the #LBBillLBChunkyStan

Pledge Poster

Week 10: Tell your MP about #LBBill #107days

The #LBBill is an idea to change the law for disabled people so that they have more control over what happens in their lives. We need your help to achieve that.

So Week 10 of #107days is an action week and we’ve dedicated it to promoting the #LBBill to all the MPs (new and old) now in Westminster. For those of you who aren’t familiar with the #LBBill you can visit the Bill website here and read the full draft Bill here. As with everything #JusticeforLB it has been developed organically and collaboratively, gathering feedback from far and wide including hundreds of disabled people, family members and allies. You can watch a short film (6 mins) about the #LBBill, where it came from and why it’s important here:

We need to contact as many MPs as possible to make them aware of the #LBBill and ask for their support in the Private Member’s Ballot. You can write to your MP via the WriteToThem website (it’ll even tell you who your MP is if you’re not sure); you could also tweet your MP and ask them to pledge their support to the Bill. If you’re unsure of what to say, you could include any of the following:

Please tell your MP that you support the #JusticeforLB campign and that you’re asking them to support a Private Members Bill drafted by the campaign. Please also explain that supporters of the campaign have come together to draft a Bill which would promote and protect disabled people’s right to live in the community with choices equal to others and the support they need. It has become known as ‘LB Bill’ in memory of Connor Sparrowhawk (who was known as LB or Laughing Boy).

Your MP might like to know that the Bill is on its second draft and has had feedback from hundreds of disabled people, family members and allies. The Bill has mass support, as you can see on the campaign website https://lbbill.wordpress.com/supporters. It builds on existing legislation, including the Care Act 2014.

Sign off encouraging your MP to support this Bill and why not ask them to encourage their colleagues to do so. Also encourage them, if they are eligible for and successful in the Private Members Bill ballot, to sponsor the Bill. It would help us if you asked them to reply to let you know whether they support the Bill. It takes two minutes to pledge their support and they can do so here: http://eepurl.com/73mXX

Please add a comment to this post with your MP’s name (and their party and your constituency if you know it) once you’ve contacted them directly, this will help us keep track on how many MPs know about the Bill. If your MP replies and has any specific questions or wishes to discuss the #LBBill then they can email us at LBBillFeedback@gmail.com We look forward to the pledges of support flooding in.

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Day97Cat

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

LALOPEN8

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 8: It’s downhill from the top #107days

Today we’ve a post from Rich Watts, inspired by this advert!


What is expertise, and where should it be located within an organisation?


Traditional views suggest expertise – and with it leadership – sits at the top of an organisation. People at the top know their stuff, know what needs to be done, how it should be done, what it will cost, and who should do it. This then cascades its way all the down an organisation until it lands in the lap of a nurse, social worker, doctor, OT or whoever, themselves tasked with working with actual, y’know, people.

 

In NHS Trusts, the top of the pyramid isn’t the chief executive: it’s the Chair of the Board of the Trust. And if taking the traditional view, the role of the Chair of a Board seems to miss entirely the point what the people at the bottom of a pyramid do, and indeed what the purpose of the pyramid is.

 

At least, this seems to be the case when taking a look over any advertisement for the role of Chair of an NHS Trust.

 

Being a sarcastic type, I’ve adapted a recent advertisement for such a post so that it reflects what this traditional view of expertise and leadership might really feel like to people who use services, their families, and staff.

  

 

This is clearly an exaggeration; as Amanda Reynolds has said elsewhere, it’s cleary what Boards should be doing. But the exaggeration hints at a mindset regarding expertise and leadership that isn’t working for the people NHS Trusts are actually there for.

 

If this is the traditional view, what is a non-traditional view of expertise and where it should be located? This is easy: it has to be recognised that expertise is in all of us, wherever we are in a system. This is most obviously in people who use services and their families themselves, as well as in every individual who makes up an organisation


This also tells us that the location of expertise isn’t concentrated at the top: it’s distributed throughout entire organisations and systems. Taking this view, the role of those ostensibly at the ‘top’ of an organisation is to create the conditions in which everyone’s expertise can be recognised, irrespective of who they are or what their role is.

Experts

Week 8: Who are the experts? #107days

We’re onto Week 8 of this year’s #107days and this week will focus on the importance of listening to parents (with reflections about why this is something some professionals, be they social care, health or education professionals, don’t always seem to grasp). #107days this year has been as organic as last year with our weekly themes partly decided in advance but sometimes emerging as an outcome of a particular event or happening.

The recent experience Sara and family have had with an independent investigation commissioned by Oxfordshire County Council with the explicit intent to exclude the family from the process sparked off thoughts in the Justice Shed around this topic. You can read Sara’s reflections about OCC here, here and here. Kicking off this week, we have an excellent post by Rebecca. Please feel free to comment below or send us anything you would like included in this week. From recent discussions on twitter and facebook, this appears to be a topic very close to people’s hearts.

Experts

If there are 8765 hours in a year, then I reckon that very roughly – very roughly – I have probably spent at least 40,000 waking hours with my 11 year-old autistic son. This is based on about ten hours a day for 11 years, factoring in approximately issues such as part-time schooling, night-time wakefulness and other aspects of his life to date. But my point is that it’s more than say, a few hours, or even, none at all.

I was thinking about this when considering the precarious status of parents of children with ‘needs’. For example, an important meeting about my son was once postponed at the last minute because ‘a professional’, whose presence was ‘essential’, couldn’t attend. When the meeting finally took place several weeks later, the professional confessed rather shame-facedly that she hadn’t so much as clapped eyes on my son. Wow. That’s some expertise, isn’t it? You don’t even need to see the child to be able to understand him and pronounce on his future.

The polarisation into opposite camps of parent and professional is further reinforced by the generation of expert reports about your child from individuals who barely know them. Their title of ‘specialist’ is sufficient to give their opinions a prestige and importance that the ‘parents’ view’ can never hope to match. Parents are invited to offer their opinions, a few crumbs from the professional table being thrown in their direction because that’s what’s supposed to happen these days. It doesn’t matter if you are a good, bad or indifferent parent, or whether in all other aspects of your life you might be treated as someone worth listening to at least some of the time, your insight will rarely be treated as of equal – or greater – importance than that of the apparent experts.

There are a few glimmers of hope-giving exceptions, of course, where there is genuine listening to and engagement with care-givers, but the all too common casual and unquestioned dismissal of parental understanding can only foster distrust and deepen misunderstandings. Sadly, your 40,000 hours of playing, cleaning, feeding, listening, helping, keeping safe, teaching and indeed learning from your child, can count for very little, despite the oft-repeated – but evidently not believed – mantra of ‘you are the expert in your child’. This cannot be good for the child who, by the way, is the only actual expert in all of this, and really should be centre stage, but in fact rarely is (despite protestations to the contrary).

Could LB’s ‘preventable’ death have been avoided if the multiple professionals involved had listened more to his mother Sara? I don’t know. But what I do know is that the lifetime of love and understanding she brought him – which unravelled catastrophically during a mere 107 days that he was no longer directly under her care – gives her an expertise and insight which no professional could ever match.