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 5: Quilt Graffiti #107days

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

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

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

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

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

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

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

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

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

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

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

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

I should know what he sounds like.

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

I should have my own stories to tell other people.

This should never have happened.

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

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

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.

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:

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.

Other edible fundraisers included a cake sale by Rosa, Ruby and friends:

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

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’.

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.

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

LB made it into Hansard, a significant and heart breaking milestone:

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.

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 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 98: An INQUEST intervention #107days

Day 98 was adopted by Deborah, Selen and colleagues at INQUEST to share what happened on the 10th June when they co-ordinated a meeting with Andrew Smith, MP for Oxford, with Deborah Coles, Selen Cavcav and Sara Ryan.

INQUEST and Sara Ryan, mother of 18 year old Connor Sparrowhawk, met with Sara’s MP Andrew Smith on 10 June to discuss a number of urgent issues arising from his death.

Connor Sparrowhawk, who had autism, a learning disability and epilepsy, died on 4 July 2013 in the Short Term Assessment and Treatment Team Unit (STATT unit) run by Southern Health NHS Trust. He was found unconscious in the bath.

An independent investigation published in February 2014 found his death could have been prevented.

INQUEST co-ordinated the meeting as part of the 107 days campaign.

Among the issues discussed were:

• the lack of support for families following a traumatic death
• the absence of an independent mechanism for the investigation of deaths in mental health care and the fact that Connor’s death was initially dismissed by the Trust as  a death from ‘natural causes’;
• that there is no automatic right to legal aid for Connor’s family – or any bereaved family – for legal representation at inquest, despite public funding being available for the Trust and other interested parties, resulting in a serious inequality of arms;
• the lack of openness and transparency about the number of deaths occurring of young people dying in units for people with mental health or learning difficulties;
• the provision of health and social care for people with learning difficulties in Oxford.

Through a combination of intensive pressure from the family and good quality legal representation set up by INQUEST, the family were able to secure an independent investigation into Connor’s death. This is highly unusual as deaths in psychiatric care are not subject to independent scrutiny.

Mr Smith responded extremely positively. He agreed to assist the family and INQUEST in addressing all these issues and pledged his interest and support.

In a turnaround for these blog posts rather than ask INQUEST why they are supporting #107days I asked Sara how she felt:

Have to say that if INQUEST, particularly Selen, hadn’t got in touch in those very early days, we would probably be sitting at home now, having had a speedy old inquest and no answers or accountability. They really are an organisation who act with integrity, sensitivity and a huge knowledge of this area. They rock it basically.

Day 96: Oxford Bus Museum #107days

Day 96 was adopted by Brigid Greaney and Kathy Liddell. They wanted to do something with some dudes and dudettes to honour LB and connect with one of his favourite places. Here’s why they got involved:

Like many others who have supported the #107days of action campaign we had never met LB or his family but were both following Sara’s blog, which quite frankly was often the highlight of certainly my day. So well written, funny, inspirational, I would devour it word for word and would frequently recite chunks of it to anyone who would listen regaling the antics of LB, even forwarding it on to my husband who became a convert himself. Then that fateful day. Will anyone ever forget that posting on July 4 2013? 18 words that turned the lives of a family upside down. We felt shock, rage, despair and we had never even met them… we couldn’t even begin to comprehend what they must be going through.

As mothers of young ‘dudettes’ with severe learning disabilities, one of who also suffers from epilepsy we are both well aware of what it is like to have to entrust our young adults to those who deem to know best. A fine balance between letting go so they can develop some independence but wanting to be involved so we can help smooth the path before them so that those inevitable challenges don’t seem quite so insurmountable. As parents we all want the best for our children so why wouldn’t we want to work with those also entrusted to support and care for our loved ones. 18 years of parenting doesn’t just stop overnight as I well know. I’m also a parent to a 21, 22 and 23 year old and am still very involved in helping them make decisions so why wouldn’t we still want to do so for our 18 year olds who need that extra support. Isn’t that what good parenting is all about? So to read that LB who so obviously adored his family, loved life to the full and enjoyed nothing more then making people laugh had died in the care of others was both frightening and heart wrenching!

Here’s what they decided to do:

Like many others we wished there was something we could do to help… but how do you make a difference to a family whose lives were torn apart by what we now know to be a preventable death in a supposedly caring and supportive environment? When the #107days of action was born we knew we had to support it somehow and wanted to do something that was meaningful to our young people, something that they could relate to and something that LB would have appreciated.

So yesterday we took a group of our young dudes and dudettes to visit one of LB’s favourite places, the Oxford Bus Museum in Long Hanborough. One of the things that came across in his Mum’s blog was LB’s passion for buses and all things transport and the enjoyment he got from visiting these places over and over again. Despite living nearby most of our young people have never been here before so we hope that by bringing them here, even though they will not have the pleasure or privilege of meeting LB they will be able to walk in his footsteps and see some of the things that were meaningful to him. And who knows… maybe just one of them will become as passionate about transport as LB and if that’s one of his legacies then his unnecessary death will not have been totally in vain and his family will have the pleasure of knowing that LB has left his mark in the best possible way.

 

Usually with these posts we don’t report on the success of an action because they’re taking place on the day (there may be more we can do re capturing them, more of that later on after #107days and we’ve had a wee break from blogging for summer). However, Kathy and Brigid’s trip happened yesterday which means we know how successful it was, we have the photos and they also sent this lovely covering email, the comment about the staff made my eyes leak a little:

Attached are a couple of  photos from our trip to the bus museum today. It was a glorious time – the staff were fantastic and put on a bus ride for us which was a great success and more importantly the kids loved it – including my own daughter who had a fab time going in and out of all the buses. So it achieved in a small way what we wanted it to do and introduced our kids to a place much loved by LB. More importantly the staff there remember him obviously very fondly and were really chuffed today to find out that LB stood for Laughing Boy. Thank you for allowing us to be part of such a worth while campaign! Kathy and Brigid

As ever, the thanks are all ours.

Day 84: Mothering in the extreme #107days

Day 84 was adopted by Chrissie. Here’s why she is supporting #JusticeforLB and #107days:

I think Sara is brill, and met her several years ago, along with Katherine Runswick-Cole (Mum’s and sociologists together), oh and we’re going to write a book, but it never happened, YET.

I saw Sara at a conference in Coventry, not long before LB’s death. Things were not okay, and Sara looked pretty drained… I went away with a heavy heart.

My daughter is 27 years old, learning disabled, fun, and one of her big loves is cutting out piccies from the Argos book – they tend to be bottom drawer items, and then she makes lists. She also loves performing!

I cannot feel what Sara is, but do worry for a future for my dude-ess and all others out there.

Chrissie wanted to do something to support the #107days campaign and today she is giving a seminar for staff and students at Aston University. You can check out Chrissie’s presentation below and we think it looks phenomenal:

 

Day 79: Buses, cake and prosecco #107days

Day 79 was adopted by Sara’s colleagues at Oxford, and Ulla explains below what they are up to and why:

What I’d really want to do today is to take Sara for a knees-up in London. Tequilas and all. That plan is still very much going to materialise but for now it will need to wait. Today we are doing something more constructive, as a collective of Sara’s colleagues. Various people from our group at Oxford have adopted days individually or in groups but we felt it was important to come together as a whole group too to adopt a day in support for Sara, and in Connor’s memory.

Let’s get one thing out there; Sara is one sublime academic. Many people following her blog online might not be as aware of her incredible academic standing and achievements, and the unparalleled speed and integrity with which her career has developed, under not a remotely standard set of circumstances. I personally have never met an academic quite as creative, engaged, straight-talking, believable, productive, inclusive and unassuming as Sara. Oh and did I say productive? She sits outside the box. If you check on Wikipedia (not that we’d ever do that), there’s Sara’s reluctant photo next to ‘lateral thinking’ (her picture is probably next to ‘publishing at speed’ too). Sara, like Connor, is one special person to know and to work with.

Our work is about listening to people’s stories, giving people space and respect and helping other people hear those stories. This, in essence, is what we hope that Day 79 will go towards achieving. We want to help more people hear Connor’s story. To listen and to act. What we are doing is hosting a ‘Buses, Cake and Prosecco’ event at our department, The Nuffield Department of Primary Care Health Sciences at the University of Oxford, on June 6. Connor loved buses, we love Prosecco and everyone loves cakes. Luring fellow academics and health professionals in with some cake is of course only a cover. What we really want to do is make everyone aware of Connor’s story, the appalling state of provision for young learning disabled people at our doorstep and to raise more awareness of and funds for #justiceforLB.

Not everyone in our group ever got to meet Connor, now everyone wishes they’d had. Most of us were in the office the day he died, gathered on the sofas for the devastating news, most went to his funeral and everyone has been shaken to the core. Many of us think of Sara’s and Richard’s pain every day, when we share a coffee or grab a sandwich together at lunchtime. When we read a new paper that triggers a thought or at the bus stop, waiting for the red bus. It’s not always said out loud but we always, always care. And that’s why we adopted Day 79.