inquest

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.

Connor's Grave

Week 1: Campaign context #107days

In our last post we re-launched #107days and shared the video that captured some of the wonderful action last year. In this post we wanted to provide some further context for the campaign. The simplest way of doing that is by sharing one key document, the #JusticeforLB Audit Report, and a Newsnight feature, both produced in response to the National Audit Office report into learning disability published at the start of last month.

So, grab a cuppa and have a watch of this, it’s only 5 minutes long, but captures succinctly the last couple of years for LB’s family:

Our Audit Report is called Actually improving care services for people with learning disabilities and challenging behaviour. You can download it by clicking on the cover below, or the link here. The report examined the challenges faced in delivering key commitments of the #JusticeforLB campaign manifesto, the extent to which these have been achieved, and the barriers to achieving JusticeforLB and actually improving care services for people with learning disabilities.

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Our headline message was that we believed that the JusticeforLB campaign demonstrates that a considerable amount can be achieved if you strip away layers of tired bureaucracy, hierarchy and vested interests and just get on with it. In a genuinely collective way.

So many of you spontaneously, creatively and magnificently got involved with #107days last year, and we’re extremely grateful for your support. One of the things that we tried to capture in the audit, but would like to understand further, is the impact that the campaign has had. To that end, please share with us what difference the campaign has made for you.

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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.

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What a difference a year makes? #JusticeforLB

It’s now 74 days since the spectacular finale of the #107days campaign, 439 days since LB died, preventably in STATT.

Progress towards #JusticeforLB continues at a pace, in the last week alone we’ve unveiled the beautiful LB Justice Quilt, and yesterday we launched the LB Bill website. All this in addition to the other actions documented in our earlier post about maintaining momentum. Quite a lot of action for an entirely volunteer campaign figured headed by a family in the worst situation imaginable. So yesterday Sara and I were talking about how much has been achieved since the end of the #107days, in those 74 days.

Contrast that progress with the progress made in STATT in the 74 days that immediately followed LB’s death. Over to Sara:

Apologies for the somewhat ironic title for this post. A year ago this week, the CQC went into the Slade House site (which included the STATT unit) and did an inspection that (at last) made visible the level of disfunction/malaise/failure that characterised provision there.

A marker of how bad it was, LB’s death hadn’t sparked any apparent consideration around whether or not there might be issues around the quality of care provided. Nothing, in 74 days after the worse outcome of ‘care’ imaginable, no action, no change, no improvement.

The CQC inspection team pitched up for a routine inspection and did their job.

The full horror of what the team found can be read here. It’s a deeply sad, harrowing, unbelievable and enraging read. And was followed by similar failures at other provision in Oxfordshire.

Here in the justice shed we try to remain positive and optimistic so, in the spirit of 107 days of action, we raise a cuppa to the CQC and effective inspection of health and social care provision.
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It is impossible to know, but our suspicion is that without CQC conducting routine inspections, issuing enforcement action and continuing to monitor the ‘progress’ at Southern Health, it is a very real possibility that STATT could still be open. The inevitable outcome of that is too much to imagine.

We have a long old road to get #JusticeforLB, but there are inklings that in small ways we may already be improving things for other dudes. So, as ever, thanks for all your support. Huge thanks also to CQC, for doing their job, but doing it with care, compassion and attention to detail, something the evidence suggest were rare commodities around STATT.

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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.

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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.

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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.

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Maintaining momentum after #107days

A month now already since the ‘end’ of #107days and we’re delighted that the momentum continues. With little/no effort from those of us in the #107days shed (which is lucky as the shed has been largely empty for the past four weeks). So here’s a taste of some of the post #107days actions… in no particular order:

Chrissie Rogers (and Eamonn) ran the British 10k London Run in LB’s name with remarkable cheer and good humour. Wonderful to see the photos.
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Continuing on a running note, Natasha @notsurejustyet is celebrating her 40th birthday shortly and has decided to mark it by running a 10k race to fundraise for LB’s Fighting Fund and SNAAP.

In another one of those remarkable coincidences or happenings that have sprinkled magic dust over this campaign, we received the following message and photo on our facebook page:
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We are very grateful to all these healthy fundraisers.

Away from the exercise track, My Life My Choice held their monthly Sting Ray night club evening in LB’s memory with a raffle and ticket sales for the fund and LB’s favourite songs on the playlist. It was a brilliant evening with punters from across Oxford dancing their socks off all night. Amy Simmons wrote a wonderful and moving song titled Laughing Boy:

How could the world keep spinning?

Why does this house no longer feel like home?

Who are you to judge the value of his life, claim the cost is far too high?

Deciding who should live or die?

I no longer feel like smiling,

I’m surrounded by friends, but still I feel alone.

His life was never yours to take! My heart was never yours to break!

The choice was never yours to make!

I will not lay down my sword, for the world can ill afford,

To grow war weary, tired or bored, I cannot go back on my word.

For the battle must rage on, until the battle has been won,

Until justice has been done, for a life that’s been and gone…

Nothing lasts forever,

But eighteen years is hardly time at all.

I fight because I have to, there’s no happy ever after,

My world no longer filled with laughter.

My world no longer filled with joy…

Laugh on, laughing boy.

In other fundraising news, Pru has created chocolate buses for sale at her online chocolate shop and is selling them for £1.07 plus P&P, with proceeds to the fund.
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Other edible fundraisers included a cake sale by Rosa, Ruby and friends:

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…..before the flag was washed and Dan Goodley and Katherine Runswick-Cole continued the global march of the LB flag.

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As Katherine emailed ‘Just to say that the response to #JusticeforLB was amazing in Melbourne and Singapore and it was so exciting for us to watch the #LBBill emerging on twitter while we’ve been away’.
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Over the last month, awareness raising has also continued at a pace. Chris and Becky were tweeting from the IASSID Conference in Vienna and Max presented on #JusticeforLB at the #PDXGathering in Portland.

Closer to home #JusticeforLB was introduced to the JSWEC audience by a number of supporters including Hannah, Liz and Jo.
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Jackie also worked her magic on the Social Care Curry punters and arranged a donation for #JusticeforLB.

Sue Bott, of Disability Rights UK also raised the experience of LB through our amazing animation, with those at their Independent Living conference #ILVision

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LB made it into Hansard, a significant and heart breaking milestone:
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In other news, we are submitting a chapter about #107days and #JusticeforLB to a new edited book about social media and disability published by Ashgate. Animated and committed discussions are happening around the development of a Private Members Bill (currently ‘nicknamed’ the ‘LBBill’) to ensure that people have the right to live in their own home (an idea extraordinary with its simplicity). A facebook group has been set up to capture early discussions around this.

Finally, the Justice Quilt is being finished by the magical team of stitchers led by Janet Read and rumours are, it will be launched at the forthcoming Disability Studies Conference (9-11th September at Lancaster University) before being displayed at three other UK destinations across the next 12 months, yet to be decided.

So, as you can see any hopes of #JusticeforLB becoming quieter or less visible post #107days are entirely unfounded. Thank you all for your continued support.

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Progress towards #JusticeforLB in #107days

When we set out on #107days we weren’t really sure what shape the campaign would take. We thought we’d aim for an action, thought or reflection each day, but we never in our wildest dreams expected the degree of engagement, passion and conviction that emerged in the name of getting #JusticeforLB and all dudes. On Friday, the final day of the #107days campaign, and the first anniversary of Connor’s death, the most remarkable thing happened. The support and engagement and love was visible for all to see, as person after person changed their profile picture on twitter or facebook. This is what Sara had to say about it:

Friday was a day I dreaded with every bit of my being. When I woke, very early, I was surprised to see that overnight, people had begun to change their photos on twitter. Some couldn’t wait till the day. Rich and I went to the cemetery. We bickered on the way there about nonsense really, both stressed/distressed beyond words. The woodland section was beautiful and the cemetery was alive with rabbits, birds and insects. We lit a candle and placed it carefully among the long grass. Next to the buses and model policeman.

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We had our usual ‘how.can.he.be.dead?’ looping discussion. Thinking about how, that time a year ago, he was still alive, looking forward to the Oxford Bus Company trip. How his death could have so easily, so fucking easily, have been prevented.

An hour or so after we got home, people started calling in and we spent the rest of the day, till the early hours of Saturday, hanging out, chatting, drinking and eating with family and friends. A couple of times during the day I had a quick peek at twitter/facebook and was astonished at the sea of black and white pics of LB. It was absolutely brilliant and so incredibly moving.

The next morning, I lay in bed reading through all the tweets. Hundreds of people. Stepping up in solidarity with the quirky guy who should still be here. Wow. I thought. Scrolling down and down. Wow. Wow. Wow. When I got to Divine Comedy, I couldn’t help laughing. Absolute genius. And the most brilliant timing.

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#107days has been outstanding. And hopefully transformative.

Friday was the busiest day on the blog since it started, gathering 7,226 of our total 63,497 views. This post isn’t going to recap on all of the contributions to #107days, we will do that at some point but not yet. Instead we thought it would be good to share the image below… see how far #JusticeforLB has travelled, in the first 100 or so days. We’ve had 63k blog hits since this blog was established 113 days ago, an average of 550 hits a day, and we’ve reached more than half the world.

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We also thought we should update people on the progress made so far to getting #JusticeforLB. At the start of the campaign we were explicit about what justice looked like, so going above and beyond in an attempt to engage the NHS, we’re using a performance dashboard to update on progress!! You never know we may write our very own robust action plan next. Anyhow, I digress. What follows is what #JusticeforLB looks like, progress so far, and an assessment of performance:

For LB

Staff, as appropriate, to be referred to their relevant regulatory bodies:
>> Waiting to hear what is happening from Southern Health: RED

A corporate manslaughter prosecution brought against the trust:
>> The Police investigation is ongoing: YELLOW

Meaningful involvement at the inquest, and any future investigations into LB’s death, so we can see the Trust and staff account for their actions in public:
>> No progress on the Inquest yet, pending the Police investigation. NHS England have been very open, and have fully involved the family at every stage in commissioning the pending Serious Case Review. The family will also choose one of two lay representatives on the SCR Board: GREEN 

For Southern Health and the local authority

Explanation from the CCG/LA about how they could commission such poor services:
>> Response One + Response Two = No progress: RED

Reassurance about how they will ensure this cannot happen again:
>> Meeting on 16 May with reassurances given that contracts are being looked at, but no confidence gained that it wouldn’t happen again: RED

An independent investigation into the other ‘natural cause’ deaths in Southern Health learning disability and mental health provision over the past 10 years:
>> An investigation has been commissioned by NHS England to look at all unexpected deaths since Southern Health came into being in April 2011: GREEN

>> Terms of reference yet to be agreed or communicated and there are concerns that the Southern Health Board Minutes present an alternative picture to that which the family were led to believe by NHS England: RED

For all the young dudes

A change in the law so that every unexpected death in a ‘secure’ (loose definition) or locked unit automatically is investigated independently:
>> No Progress: RED

Inspection/regulation: It shouldn’t take catastrophic events to bring appalling professional behaviour to light. There is something about the ‘hiddenness’ of terrible practices that happen in full view of health and social care professionals. Both Winterbourne and STATT had external professionals in and out. LB died and a team were instantly sent in to investigate and yet nothing amiss was noticed. Improved CQC inspections could help to change this, but a critical lens is needed to examine what ‘(un)acceptable’ practice looks like for dudes like LB:
>> There appears to remain a gap in understanding ‘what good looks like’, or in implementing what is already known. It greatly concerns us however that the body appointed to address this very matter, Winterbourne JIP, appears to fail to make any real progress. We were surprised that they chose to not engage with the #107days campaign, especially given the pertinence to their remit and the widespread support from key stakeholders: RED

Prevention of the misuse/appropriation of the mental capacity act as a tool to distance families and isolate young dudes:
>> Lucy Series blogged about this issue on Day 32 and also blogged on her own website when the Government responded to the recommendations of the House of Lords Select Committee on the Mental Capacity Act 2005.

>> It also came up on the webchat with Steve Broach on Day 103. Steve said this:

The most recent Supreme Court decision to directly impact on disabled young people is the Cheshire West case, which radically increases the number of disabled people whose placements involve a deprivation of liberty requiring justification to avoid a breach of their human rights – see the judgement here.

So in summary we’re confident of progress: GREEN

An effective demonstration by the NHS to making provision for learning disabled people a complete and integral part of the health and care services provided rather than add on, ad hoc and (easily ignored) specialist provision:
>> No progress. RED

Proper informed debate about the status of learning disabled adults as full citizens in the UK, involving and led by learning disabled people and their families, and what this means in terms of service provision in the widest sense and the visibility of this group as part of ‘mainstream’ society:
>> This is where you guys come in. We were blown away by the engagement with the #107days campaign which showed a version of collaboration and co-production that the social care textbooks could only dream of. LB and dudes were central, always central, there was no hierarchy, fancy job titles, pay packets, pecking order, communications strategy, spin or fact-finding visits. You stepped up, you debated and contributed, you made suggestion and led by example, and through it all ego never entered the arena. Most of all you gave us, and each other, hope. Hope for a better, brighter, alternative future. This is what Mark Neary had to say:

It has been a very moving 107 days but yesterday was quite phenomenal, with so many people recognizing the importance of the campaign. I do feel hope. In the last couple of weeks we’ve had several of the great and the good wringing their hands and declaring that they are at a loss about what to do about ATUs and the future of the people trapped in them. The Winterbourne JIP has failed to bring about any meaningful change. Norman Lamb says the right words but admits he has hit a brick wall. This week I was invited onto BBC Radio London to discuss adult social care and one of the leaders from ADASS was on, also confessing his fears of the future. Its looking like these people can’t do it. I’m not sure the will is there. Perhaps the system can’t be changed from within the system. Perhaps it will be movements like #JusticeforLB that change the social care world. The will, the passion, the energy, the humanity is there. I think we have to stop waiting for the leaders and the social care world to show its humanity. It ain’t going to happen. Apart from some isolated (albeit powerful) examples, I don’t see any drive from within social care to truly serve the people they are meant to be serving. Service is dead. The drive, the humanity is coming from the families, ordinary people and the legal world. Coming together makes us very powerful – we’ve already seen lots of examples of the system feeling very threatened by that power. Good. This isn’t the time for observing niceties. This is the time for action. I’m sick to death hearing about culture changes being needed. Sod organizational cultures – let’s start applying the law. The human rights act. The mental capacity act. If your culture means you can’t apply the law, in fact you break you law, then you’re not fit to do your job. Let someone else take charge.

So we’re giving this performance marker a big fat GREEN.

This gives us the following summary of confidence in performance:

DashboardRed 7 indicators RED: 2 Southern Health, 1 NHS England, 2 CCG/LA, 1 Winterbourne JIP, 1 unclear

DashboardYellow1 indicator YELLOW: Police

DashboardGreen4 indicators GREEN: 2 NHS England, 1 unclear, 1 JusticeforLB’ers

Each and every one of you who have contributed to the #107days campaign has inspired us, and renewed our hope, that there is a better way and it’s in our grasp. We aren’t waiting for anyone’s permission to shape it either. For those who have been asking #107days is over for 2014, but #JusticeforLB has only just begun. We will continue to update this blog, twitter and facebook, from time to time, and while the days of action have completed, you are welcome to continue to use the blogs to debate and discuss things. In the words of Mark Neary:

Pulling this post together, I guess I’m hopeful for the future for Steven, and for social care because the #justiceforlb campaign showed that you can have your guts ripped out but through love, humanity, downright common sense and a fantastic dogeddness, find the strength and compassion to fight on.

and Elizabeth:

#JusticeforLB and the #107days campaign has been amazing and inspiritional. To see so many people come together behind a cause shows something of what might be achieved in terms of a real and lasting legacy. It has made me feel hopeful that it is possible to change the way people with disabilities and learning difficulties are treated. As a mum to a young dude I am constantly thinking of how to keep him safe and cared for in the future.  I cannot imagine how difficult the last year must have been for Connor’s family, without him. The sight of so many LB profile pictures on Twitter today was a very fitting way to round off the #107days. A reminder of the person at the centre of it all. A handsome, quirky, funny, unique and special 18 yr old young man. He should not have died. x

and finally Anne-Marie:

“There is a saying in Tibetan, ‘Tragedy should be utilized as a source of strength.’
No matter what sort of difficulties, how painful experience is, if we lose our hope, that’s our real disaster.”
― Dalai Lama XIV

#107days is hope.

Thank you all for the support. Let’s keep the hope alive.