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 #LBBill

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.

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.

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.

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.

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.

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.

#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.

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:

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

1 indicator YELLOW: Police

4 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.

Day 107: Honouring LB #107days

Today we come to the end of #107days of action, exactly a year to the day that LB died, whilst in the ‘care’ of Southern Health, an entirely preventable death.

As accidental campaigners we never really could bring ourselves to plan for today, we’ve discussed it often, but nothing felt appropriate. Yesterday we finally settled on today’s action, in keeping with the rest of this entirely crowdsourced campaign, it’s over to you, our amazing, passionate, creative, committed, dedicated network.

We have two options for you today, you’re welcome to do one of them, or both of them (or none of course, it’s really your choice).

Firstly, please leave a comment on this blog post with your ‘take away’ message from #107days; what one memory, or thought, or learning will stick with you. How has LB, and this campaign in his memory, had an impact on you? We’re hoping for lots of comments and you’ll be able to read them as they grow throughout the day. If you’re a blogger and would like to write a post on your own blog please do add a summary, and a link into the comments here. Please remember that comments are moderated, so if your comment doesn’t appear immediately there’s no need to repost it!

Secondly, please change your social media profile pictures to LB for the day. You’re welcome to change it on twitter, or facebook, or tumblr, or instagram, or any combination of the aforementioned sites (and of course any others). We think this collective action will have quite a visual impact, to maximise that please download our profile pic below (right click on the image will allow you to save it to your computer and you can then upload it to twitter) so everyone is using the same black and white pic.

For maximum impact we ask you to only use the picture for the day, we very much hope you’ll join us.

More information on what next for the #JusticeforLB campaign will follow in a couple of weeks. You can follow this blog, or follow us on twitter, or facebook. We will seek your input before we make any decisions, but before we ‘move on’, we’d like to honour LB today.

Thank you all, for your support throughout #107days and today especially.

Day 106: Talking and remembering #107days

Today, our penultimate day, is shared between Laurie and Sara’s colleagues, Jo, Adam and Luis, at Healthtalkonline.

Laurie is a 53 year-old person with Asperger’s syndrome. Connor’s death had a profound impact on her life because she is, herself, the parent of children on the autism spectrum.

Laurie wasn’t diagnosed until January 2006, but she had this to say, “it [being diagnosed with Asperger’s syndrome] has changed my life. I immediately started educating myself on autism and the Asperger’s side of it and getting involved with autism research. It’s how I met Sara”.

Laurie was interviewed by Sara, in September 2007, for the Healthtalkonline series of interviews, she recalls:

She let me give her a lift back to the train station, I’d been involved with care services since I was 9 and wasn’t used to being treated like a human being. Just because we’re on the receiving end of ‘help’ doesn’t mean we cannot, at the same time, give something in return.

Out of curiosity, I asked Sara what made her so interested in autism and it was in that short car journey Sara told her about her son, who was autistic, LB.

Laurie volunteered to write a blogpost for Day 106, that she’ll publish on her own blog too and she is asking for donations for LB’s Fighting Fund for her birthday.

It’s my birthday today; or, at least, should be. Providing this story gets published on the right day after being completed and submitted in a timely manner, it ought to be July 3rd. If it is, then well done all of us for coordinating everything to such sweet perfection. If not, well, there’s always another year. At least we like to think so. Birthdays have always been rather more significant than Christmas, for me, never having been a lover of the melee surrounding such a communal festival. While we may share our special day with several million other people around the world, we do not know most of them and, unless we are one of a multiple birth, will probably be the only person in the family celebrating their personal ageing process that day.

Do others tie global dates and events to things we can pin to our personal experiences? Like remembering what we were doing when JFK was shot. Bit before my time but you get the point. Where were you when you heard about Elvis? And how did you first hear the news of Princess Diana’s terrible car accident or the Twin Towers ‘tragedy’? What is it that makes me remember November 14, 1972 as the day Princess Anne married Captain Mark Philips? Heaven’s sake. That their wedding day fell on Prince Charles’ birthday? Why would anyone outside the immediate family remember that in the first place? Maybe my brother had a point when he said I was always good at remembering dates, which was astonishing news. How could I possibly be good at something I forgot most of?

Days and dates and measurables are important, very often, to people on the autistic spectrum and I am pretty typical in that aspect. This year, on the day before the first anniversary of Connor’s death will no doubt see it adding a lot of reflection on life, death and the passing of time. I will be thinking back to how I spent the day on July 3 last year. What were you doing? I cannot remember. Some birthdays are more memorable than others.

There is a Biblical proverb which says: For to him that is joined to all the living there is hope; for a living dog is better than a dead lion. (Ecclesiastes 9:4, JPS 1917 ed). None of us wishes to be old, although many have longed for the wisdom acquired by years to have been more evident in our youth.

As the 107 days has passed and we have, together, counted them, a personal image has grown in my head, brought back from a dusty recess of a childhood memory and a visit to old Mrs Abbot. It was almost forty years ago and shortly after Christmas. Let me take you there.

There’s a clock standing in a dark wood panelled hall; a grandfather clock, standing to the left, set there by Old Father Tyme himself, surely. A dusty Persian runner stretches from one end of the polished floor to the other. Behind each door lurks a terrifying secret; maybe a monster ready to leap out and interrupt the sound of the languid tick (breathe) tick (breathe) tick (breathe) as its pendulum ambles from one side of the clock’s glass door to the other, hypnotising the dark Victorian house into submissive torpor. Maybe the door to the right will slowly creak open to allow a bent old hag to shuffle through on her slowly unwinding mortal coil? Perhaps the incumbent ghost is about to roll in from underneath the cellar door, like a sticky fog to rise up to the ceiling before stealing the souls of the petrified child shivering with fear in the gloom?  Words from Shakespeare grow like creeping ivy across the memory.

Tomorrow and tomorrow and tomorrow creeps in this petty pace from day to day, 

the clock ticks and breathes. Old Father Tyme stands at the door.

To the last syllable of recorded time;

and all our yesterdays have lighted fools the way to dusty death.

Out, out brief candle!

Life’s but a walking shadow, (Macbeth, 5:5:19-25)

Terrified, the frozen child stands like alabaster, hypnotised by the minute hand defying gravity to reach the top of the hour and chime.

This year, I will spend much of my birthday thinking about a remarkable young man I was never privileged to meet and whose family, no doubt, be thinking back one year to the last time life had some kind of ‘normal’ attached to it. To his family, I extend a Jewish traditional greeting on the death of a loved one and wish you all ‘long life’. May the memory of Connor, your lion, your Laughing Boy, remain in your hearts forever with the certainty the shadow of his life never leaves you.

Laurie was being interviewed by Sara for Healthtalkonline. Today is also shared by her team of colleagues and this is why:

As friends and colleagues of Sara, the Healthtalkonline team have all participated in the #107days campaign individually with contributions including music, sewing skills and a guided tour of London. But we wanted to contribute as a charity too.

For those who don’t know, Healthtalkonline is a charity website that provides health information in the form of people’s experiences. We do this by interviewing people on film about their experiences of health issues and making the videos available on the website. The interviews are carried out (and the data analysed) by researchers from Sara’s research group, The Health Experiences Research Group (HERG) at Oxford.

Sara has worked with HERG and the charity since 2006 and is responsible for our Autism and Learning disability health sections. In fact we share today with Laurie who contributed her story to Sara’s Autism experiences project. Although separate, the two organisations have been closely intertwined from the time we were founded over 13 years ago and have shared an office for almost a decade.

The charity and research team were all together in the office on the day Connor died, in shock and in tears for our dear colleague’s beloved son. The day before this, in a sad twist of …something (for which we cannot find a word), Sara agreed to be interviewed about Connor so that a member of the team, Sophie, could practise her interview skills for another Healthtalkonline project. This interview was never meant to be made publicly available but in the days following Connor’s death, it became a valuable memento for his family.

We could think of no more fitting way for us to take part than by adopting day 106, exactly 1 year after it took place, to share this interview (with Sara’s permission) on Healthtalkonline. We’ve divided the film into 4 parts:

Sara talking about Connor and what a dude he was

Sara and Connor’s journey to diagnosis

What Sara had to say about accessing decent support for Connor, something that proved difficult throughout his life, long before he went into the unit

Sara talking about her blog, which has become a bit of a phenomenon, and the value of social media

In editing these videos it occurred to us that this will be the first time many followers of the JusticeforLB campaign have heard Sara speak or even seen what she looks like. Many people may not know what life was like for Sara’s family before Connor went into the unit.

By putting a face and voice to the name, we hope these videos will add a new dimension to the story and a chance to say again what made Connor great and how loved he was.

Day 105: Textile art, provider challenge and a headshave #107days

Day 105 forms our hat-trick of three way adoptions for the week, it is shared by Briony, Mark and myself, George.

First up is Briony, who had this to say about supporting #JusticeforLB:

I wanted to be a part of #107days and the #JusticeforLB campaign after reading Sara’s blog. It was heartbreaking to read and difficult to walk away from. It also hit me hard because my youngest daughter has autism and at nine years old I am aware of the realities of trying to access the support that she needs. It almost always becomes another battle with the system. You get tough, your priorities change and the little things don’t matter anymore. In fact, she is probably the reason that I am finally doing what I’ve always wanted to do.

Briony made the most beautiful wall hanging for #107days, read on for more:

The textile piece that I have made for #107days is centred around a quote from one of Connor’s favourite songs, ‘National Express’ by Divine Comedy and includes a London bus representing his love of buses and the Twitter bird representing the positive impact that social media has had in gaining support for the campaign. I chose this particular quote from the song because I felt it best captured the spirit of #107days and the positive actions people have taken to try and secure a better future whilst fighting for justice for LB.

As it developed into quite a big piece I realised that I could do more than just share photographs of it through social media. I contacted Louise who runs a creative social enterprise called Scrap in Sunnybank Mills, Leeds and she was happy to display it for me in their cafe during 107 days next to Connor’s story. Many different people pass through Scrap so it seemed like the ideal place to reach a new audience and spread awareness of Connor’s story and the campaign.

Whilst making it my youngest came up to me and said, “You’re always making LB stuff!” I started to prepare for what was coming next thinking, Oh here we go! Just because it’s not about you! But then she went on to say, “You should start an LB sewing support group and make buses and signs with his name on…and cushions.”

This insight, together with her unique sense of justice (be it in the form of Dog the Bounty Hunter!) leads me to think that she could definitely teach Southern Health a thing or two.

Next up today is Mark Lever, the Chief Executive of the National Autistic Society (NAS). Mark wanted to adopt a day to write something to challenge himself, and other social care providers. Here’s what he had to say:

Social care providers and the regulators are coming under the spotlight more than ever – and why shouldn’t they?

When a family makes the decision to place someone they love in the care of a ‘third party’ they are vesting more trust in that decision than any other. Local authorities making a placement are rightly concerned that they are spending significant public money on a good service. Everyone has an interest in ensuring the person being supported is well cared for and achieves the best outcomes possible.

If we’re all striving for the best outcomes, why is there not a more open discussion of the lessons learnt when things go wrong?

I am not talking here about the systemic institutionalised failures we witnessed at Winterbourne View. Rather, the incidents that occur even within services run by respected and reputable organisations working to do the best they possibly can for the people they support. As someone running one of those organisations, I can confirm that, of course, they do happen.

Working in social care is very challenging – and simply isn’t the right job for everyone. The people who choose to make it a career are dedicated and passionate about their work. They are certainly not doing it for the money where, for many, the pay is barely more than the minimum wage. To do the job well, they need an incredibly strong temperament and values base.

My concern is that, as services come under increasing pressure, including financial pressure, people being supported risk being seen as commodities and ‘good’ support can mean ticking the right boxes. The values base is in danger of being lost and forgotten as organisations strive to be seen to be doing the right thing and maintain contracts.

As more pressure is placed on providers, we should feel confident that we can share our occasional failures openly so that we, and other providers, can learn and constantly improve.

Instead, we’re currently too often on the defensive. This can lead to us being the opposite of open and get in the way of making changes for the better. We’re necessarily and properly held to account, given we care for often very vulnerable people at public expense. We also have to acknowledge that we’re in a competitive environment, where one organisation’s failure may be another’s opportunity. But this should not lead to a blaming culture, shut in on itself.

I’m not arguing for a ‘stuff happens’ attitude. Rather, greater openness and honesty should reinforce the values base and build on a wider commitment to challenge all service failures with energy and rigour. We owe this to parents, carers and the people we support if we are to live up to the trust they have placed in us.

Here’s what Mark has pledged to do, in addition to offering this blog post:

My commitment to action to support the #107days campaign is to convene a roundtable of 8 to 10 service providers to explore how we as a sector can share more openly the lessons learned from failures in service delivery. The aim will be to learn more and, as a consequence, to support and inform the work to reduce the risk of similar events occurring again.

Finally today, it’s over to me, George. Here’s why I wanted to support #JusticeforLB and #107days:

I’d like to suggest that I considered my involvement in #JusticeforLB, that it was something I deliberated about and mused over, that I was reconnecting with my early career in Special Ed, that I was giving something back, but the reality was it was nothing of the sort. I’m supporting #JusticeforLB because I couldn’t live with myself if I didn’t, it wasn’t so much a choice, as a compulsion. I was one of Sara’s many legions of fans who regularly read her blog about life, and I felt sick to the pit of my stomach on July 4th last year when I read this.

It was 361 days since my grandfather had died, and 231 since my Dad had died and I felt like I’d had enough death to last a while. But for LB to die, this wasn’t right, he was a fit young man, spending time in a specialist unit, with experts, to help make some life choices and changes. He couldn’t die. For the last year I’ve oscillated between disbelief and anger, and my internal pendulum has yet to stop swinging and come to rest. What Sara, Rich and family have had to face, is like the yin to our family’s yang. We had the knowledge that Dad was terminally ill, and the truly amazing support of our local hospice’s Hospice at Home service, that allowed him to die a peaceful and dignified death; LB was fit and well, his death was preventable, and those responsible have done their best to shirk all responsibility ever since. If you wanted to compare and contrast a bad death experience, and a good death experience, Sara and I would be a good place to start.

In February, before the independent report into Connor’s death was published, I was appalled to read Sara’s account of how they were being treated by Southern Health. I ended a blog post ‘They [LB’s family and friends] need to be able to grieve and let go of the pain, not be constantly poked and prodded and let down. Someone please make it stop. Now’.

A month later, nothing had improved. Worse still I’d been a key instigator in creating a social media storm around the publication of the Verita report, and I suddenly felt like if we couldn’t make progress and turn this into something good, then I’d have just added to Sara and Rich’s angst and pain. Rather than waiting for someone else to step forward to make it stop, I felt compelled to act, to climb into Sara’s virtual cave, and share her pain. This was only sealed for me when I had the chance to meet Sara and Rich for the first time in March.

As for #107days, if no-one with a remit to sort this stuff out was going to make things easier for LB’s family (and to be fair CQC were making efforts early on, but social care and providers were deafeningly silent), then I’d do my best to connect with Sara and try to make some sort of sense out of this madness. Even before the Minister publicly stated that the Winterbourne JIP (established to improve learning disability provision after Winterbourne View) was an ‘abject failure’, there was a growing consensus of such. So what could we do? We could try to improve things, get stuck in and do what those paid to do it evidently didn’t (don’t) consider their remit…so #107days was born. It emerged out of a desire to mark and witness LB’s life and death, to improve things for other dudes, to raise awareness and get people talking and sharing and collectively responding, and most importantly acting.

So what am I doing?

I’m shaving my head!

To raise awareness and funds for the local hospice, Rowcroft, that supported our family, and for #JusticeforLB. You can see more of what I’ll be losing in the video that follows:

So far I’ve raised £5,270 but I’d love to raise a little more, so please do donate if you can afford to. You can pledge any amount, and if your organisation would like to know more about how to use social media campaigning you can even pledge for a half day workshop with Sara and myself. Plug over.

I just wanted to finish by saying what a truly inspiring campaign #107days is. Each and every person who has adopted a day, or pledged an action, or shared their experience, has made it what it is. It has been an absolute honour to be involved and I’m left in awe at what you can achieve when you set your mind to it and don’t worry about who gets the credit, or the blame. I feel confident that the power of our collective, will continue to improve things for all dudes, in LB’s name. Thank you all for your support with that.

Day 104: Voices to be heard #107days

Today is another three way share, this time between Sunnyside Rural Trust, Bringing Us Together, and inControl.

First up, Sunnyside Rural Trust who adopted today to share a report of the celebration and launch (yesterday) of a special and innovative Memorial Garden. The garden, which is a physical representation of the poems collected in The Memoir Garden, has been created as a place for remembrance.

A group of 18 trainees from Sunnyside Rural Trust, who all have learning disabilities, worked with local author Emma Claire Sweeney. She explored their reminiscences and collaborated with each one to produce a poem. The resulting book, The Memoir Garden, was well received both by literary critics and by the learning disability community.

The participants valued this all too rare validation of their experiences. At the launch, Roxy Simmons, one of the 18, read a speech prepared by the group, saying “We thought it was important for people to understand about our lives. We don’t want people to think that we are thick. We want people to know that we have the same feelings, relationships, and experiences as everyone else. We will maintain the garden together as a place of peace and quiet where we can sit and reminisce. In particular, this is a space where we will remember our old friend’s Leon and Marie”.

The garden was completed within 107 days to support the #JusticeforLB #107days campaign. The work on the garden has been carried out by the team at the Activity Centre along with volunteering help from Berkhamsted Waitrose. Painted glass bottles, depicting images from each poem along with the poet’s names, hang from the trees. The garden’s centrepiece, a wooden sculpture of a book, was unveiled at the launch. The sculpture is engraved with the words ‘Voices to be heard’.

You can read the full press release from the event yesterday here. Next up, Bringing Us Together:

The #JusticeforLB campaign highlights our fears as parents. It has had a profound impact on many of us and has brought us together as we reflect, feel emotional and share our fears. Each of us knows that this could happen to our own son or daughter.

We are fearful that our young people’s voice will be lost, that they will not be listened to and that we, the people who love them the most, will be left out of vital decision making. We have huge concerns about the following questions:

• What happens to our young people when we are dead or no longer able to look after them ourselves?
• How do we keep them strong and supported to make decisions that have a huge impact on their lives?
• How do we keep our young people safe as they grow up into a world that is full of prejudice, fear, abuse and discrimination?
• How do we keep their voice at the centre of all planning and decision making?
• How do we convince others that our sons and daughters, whatever their level of impairment, have a voice that must be listened to if they are to be happy, strong and safe?

For many of us our years of involvement and knowledge of our own children and the systems they encounter brings us a deep insight into our children’s well-being. We know what makes them happy, how they communicate and what support they need. We know what they are trying to say and we work hard at sharing that information with others.

However, only too often our understanding is ignored; our young people are misunderstood and problems arise. We want our young people and adults to be independent and safe. We want our children and young people to grow up knowing and feeling what it is like to be in the ‘driving seat’ and to understand the real power of making decisions, what good looks like, and what support they need to be part of their communities.

Our event to mark Day 104 of #107days of action for #JusticeforLB will give families the opportunity to come together to talk about and share stories of:

• The madness of the system and what we can practically do amongst such madness
• How can we make the system less mad? We will look at what is working and what is not working in the current system
• How do we keep ourselves strong within the current madness?

Through telling our stories and using positive ways that families have used it plus ways in which it has been abused will enable families to learn from one another.

The event is a collaboration between The Cameron Trust, Bringing Us Together and the Centre for Welfare Reform.

Last, but by no means least, is In Control:

For the past eight years, In Control has been working with a growing number of services, children, young people and families. Although this work often focuses on the systems needed to make personal budgets work, the real drive to this work is ensuring good support for all children and young people, and the recognition that some may need more support than others. We never loose sight of what this is really about…valuing and cherishing every child’s right to aspire, learn, enjoy and take part in the life of their family and local community in ways that make sense to them, and for families to get the support they need to provide a healthy, happy and nurturing home for their children.

The experience of LB and his family is one of many recent reminders that we, somewhere along the line have a gone a bit off track, have forgotten why we are supporting children and young people and have ended up with systems and support that lead to tragedies like those of LB and his family. We are starting our day (Day 104), chaired by Miro Griffiths, with a presentation by two parents, Nikki and Tricia. Nikki Delgarno, mum of Ethan, and Tricia Nicoll, mum of Ella and Cieran, both share a powerful story of the challenges of the system and the resilience needed to keep going.

But what does the future hold for Ethan, Ella and Cieran? With over 100 people from children’s services, including many parents, we have a chance to discuss and set out how we can change the future for these and many other children and young people, for us and the community we work with every day. Day 104 is an opportunity to step towards ending such experiences as those of LB and his family, of Josh and his family in Cornwall, of Nico and many others.

Following Nikki, Tricia and a group discussion we will be hearing from those involved in leading the Winterbourne programme and from Action for Children who will share a great example of what is possible if everyone commits to working together and supporting a child and their family. We will share presentations and notes from the whole morning and as suggested by #JusticeforLB we will be asking everyone to commit to taking one action which will make a difference for children and young people they know.

With so much awesome happening today, we’re feeling ever more confident that #JusticeforLB really will result in improvements for all dudes. Thank you all.

Day 103: Person centred practice, nursing students, and a legal webchat #107days

Day 103 is our first three-way share of a day. It is shared by Max of the UK Learning Community for Person Centred Practices, Bridget and Sarah from School of Nursing Sciences at UEA, and Steve Broach from Doughty Street Chambers.

When asked why they were supporting #JusticeforLB and #107days the UK Learning Community for Person Centred Practices had this to say:

We wanted to support the #JusticeforLB campaign because it highlighted how far we still have to go in the UK with promoting person centred planning, thinking and approaches. Even though these approaches were right at the heart of the ‘Valuing People’ strategy for people with learning disabilities since 2001, staff at the Assessment and Treatment Unit where Connor Sparrowhawk was confined in the 107 days running up to his avoidable death did not understand what Connor’s family were trying to achieve by holding a Person Centred Review at the ATU, and did not respect this work, saying it “Was not the Care Programme Approach”. It seems clear from the Verita’s report, and from other accounts, that if the ATU had listened properly to Connors’ family when they told them what was important to Connor now and in the future, and the things that would help to keep him healthy and safe (such as a proper approach to his epilepsy), his death could have been avoided.

This is what they decided to do:

I contacted the campaign on behalf of the UK Learning Community for Person Centred Practices. Our national gathering was coming up on April 30 2014, and I wanted to ensure that everybody there heard about Connor’s story. At the closing of the gathering, Gail Hanrahan, a close friend of Connor’s family spoke to everyone so passionately and movingly about Connor and his life. We shared a #JusticeforLB postcard with every participant (about 50 people) and asked them to make 2 pledges:

1. Firstly to tell us how they would use their postcard to share Connor’s story, and
2. Secondly what they would do in their work to ensure that within their sphere of influence, people and their families were listened to.

We’ve followed up those pledges asking people to let us know what they’ve done. Here are some of the responses we’ve received.

Cath Barton said ‘I always read Sara’s blogs and share and have made a pledge for George Julian’s #hairhack fundraiser which is raising money for Justice for LB and Rowcroft Hospice’.

‘My action is to always support people and their families to have a voice and be listened to. I hope my role as Community Circles Connector will help people develop relationships and networks which will support them to be heard and valued’.

Penny Jackson said ‘I am due to deliver Person Centred Thinking training in July to our Independent Futures staff and will be including LB’s story within this’

Max Neill took the big #JusticeforLB poster to share with the Preston Learning Disability Forum. They displayed it at events during Learning Disability Week in Preston.

Every story about how these person centred skills have worked and made a difference increases the impetus for change. If we can succeed in turning these person centred behaviours into everyday habits, at scale across whole services and sectors, then we can create fundamental lasting change in the culture, in the way we include and involve families and in the way we regard people.

Max and TLCPCP have written a fuller write up of their context, their gathering and the actions that have followed. You can read it in full here.

The second group sharing Day 103 are staff with interests in safeguarding and learning disability from the School of Nursing Sciences, UEA, Norwich. When Bridget Penhale and Sarah Richardson were asked why they were supporting the campaign they said:

We didn’t know LB personally but followed his mother’s blog from before he was admitted to Slade House and were very upset at the news of his untimely death. We have followed and supported the development of the campaigns since.

They were keen to ensure that a large number of staff and students at their university heard LB’s story. This is what they have planned:

On Day 103, sessions in the Essential Nursing Practice module for first year undergraduate nursing students are being dedicated to LB. The module covers the role of the Community Learning Disability Nurse and one of the specific topics today is about epilepsy; this is a core condition that our students learn about from the beginning of their programme (but also focus on throughout their course).

The Enquiry Based Learning Package is dedicated to Connor and students taking the module will be introduced to him at the beginning of the day. The Lecture on Introduction to Epilepsy will also be dedicated to Connor.

Information about Connor and the campaign will also be available for everyone working in or visiting our building on that day (through a slide on our plasma screen in the reception area of the building). We will continue to raise awareness about Connor, his life and untimely death throughout the coming year(s) – for as long as it takes.

The final person sharing today is Steve Broach, a barrister at Doughty Street Chambers. Described on twitter yesterday as a miracle, a ‘competent barrister able to put suffering people at ease’, Steve has very generously offered to run a legal webchat, an hour long Q&A session tonight at 7.30pm.

Steve will be holding a free web Q&A on the law in relation to education, health and care services for disabled young people in England. Steve will look at both the current law and the changes coming soon under the Children and Families Act 2014 and the Care Act 2014. He will also cover what the Human Rights Act 1998 should mean for the standard and quality of care disabled young people receive. Steve can only answer questions about the law in England, as the other UK nations have different legal frameworks, although some of the general points he makes will be relevant across the UK.

We are very grateful to Steve for his offer, and know that many of you will wish to make use of this opportunity. To participate you can send your questions in advance using the hashtag #JusticeforLBLaw, or add them on our facebook page, or as a comment to the web-chat blog page, and Steve will answer as many as possible tonight.

Please note Steve can only answer general questions about the law and cannot provide advice on individual cases during this session.

Please share the information about the web-chat far and wide, this is a great opportunity, and one that we hope many people will be able to learn from.

Day 102: Three cyclists and a christening #107days

Day 102 is another shared day, in fact all remaining days are shared so I’m going to stop saying that! Day 102 reports on two events that took place yesterday (Day 101), both of which were linked to #JusticeforLB and #107days and honouring LB. The first, a christening, was adopted by Jemma, Simon, and the star of the show Eseld, and the second, a 107mile bike ride/marathon/torture trip across the Chilterns, was adopted by Martin, Chris and John.

Here’s what Jemma had to say about why they were supporting #JusticeforLB:

We’ve known Sara, Richard and their family since we moved to Oxford nearly a decade ago. Connor was always an exuberant presence keen to share his unique view of the world. We were appalled to hear of his death. It is remarkable and moving how Sara and Richard have used the passion of their grief to protect other young dudes.

Jemma and Simon decided to adopt a day to coincide with Eseld’s christening:

We knew we wanted to be a part of #107days but were unsure what to do. When we realised that our daughter Eseld’s christening would fall within the period it seemed a perfect opportunity to make all of our friends and family aware of the campaign and to raise funds for #JusticeforLB by asking them to donate instead of buying a present. Many of our guests wanted to know more and started reading Sara’s blog. We are honoured that our celebration was able to include Connor.

While Jemma and Simon and their family and friends were enjoying Eseld’s christening, about thirty miles away, (fab Uncle) Chris Newman and Dad’s Martin McCarthy and John Sparks were putting themselves through all manner of physical effort and pain. Here’s why:

We are ‘life raft‘ hubbies and Connor was one of our own who was much loved by us all and who we miss. As parents of dudes we are appalled by the way Sara and Rich have been treated since Connor died. Our dudes deserve better.

So John, Martin and Chris decided they would jump on their bikes to raise awareness and funds:

The cycle ride through the very lumpy Chilterns was 102 miles long and included 6000ft of climbing. Our trio of intrepid cyclists intent in honouring #107days legitimately added on an extra 5 miles to ensure they covered 107 miles.

That’s 8.5 hours of peddling. In addition to raising funds (details on how to donate here) they also raised awareness, including amongst fellow cyclists who asked about LB as they peddled past.

A truly phenomenal effort.