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 83: H&SA and BILD respond #107days

A number of the remaining #107days are shared days, and today is a powerful duo of H&SA and BILD. Alicia, from the Housing and Support Alliance (H&SA) and Ann, from British Institute of Learning Disability (BILD) both got in touch to adopt a day with a real urge to do something to make progress. We are delighted at the actions they have taken and feel confident that they will support real progress towards #JusticeforLB and all dudes.

So, first of all why did they want to get involved with supporting #107days and #JusticeforLB? Alicia, from Housing & Support Alliance had this to say:

H&SA is supporting #JusticeforLB firstly because Connor and his family only wanted something simple and straightforward, to get the help they needed and had a right to in difficult times, and it ended in the most unimaginable tragedy. We know that people with learning disabilities that have the most complicated needs can and do get good help, a good place to live and the support they need to live there. It is doable and affordable yet all over the country there are still many people with learning disabilities and families getting poor and mediocre support, being sent away from the people they love because there is no decent support locally and being needlessly hospitalised when all they need is for professionals to listen and respond. It is an outrage.

and Ann from BILD:

Like so many, we at BILD, the British Institute of Learning Disabilities, were dismayed to hear of the death of Connor Sparrowhawk, yet another young person dying whilst in ‘care’.

We were then shocked, again like many others, when the independent report made it clear that his death would likely not have happened had the right kind of support been in place in the unit where has was staying. We can only imagine the distress of his family and friends knowing that his death was preventable.

So many people with learning disabilities and autism have suffered from the lack of the kind of support they have every right to expect and should have. Too often organisations who are there to provide care and support fail to do so. It is people with learning disabilities and autism, and their families, who pay the greatest price.

Then we saw that the organisers of #107days wanted to harness the outrage that emerged in response to Connor’s death to fuel a campaign aimed at ensuring lasting changes and improvements are made. We wanted to join in.

As you can see they both wanted to help make real change. Alicia and her team are doing this:

To support the #107 days campaign H&SA are going to do something practical to help get people with learning disabilities out of institutions. In the latest Winterbourne View Concordat data it says that are 2358 patients living in ATUs that do not have a transfer date.  There are various reasons given for why most of those people do not have a transfer date. For 165 people it says that the reason they are still there is that there is not suitable housing provision locally.

H&SAs commitment to #107days is to try and find out what the local issues are and offer help to get housing for each of those people. We will do this by:


Also happening today is BILD’s action and you can follow it and participate on twitter using #BILDepilepsy.

To show our support we decided to organise a free event on 10 June, called, ‘Epilepsy – what matters?’, aimed at front line staff, families and anyone interested in epilepsy and people with learning disabilities and or autism. As well as the sessions taking place in Birmingham, we will also use the web, social media, and BILD’s many members, to help raise awareness of the issues around epilepsy support for young people with learning disabilities and or autism.

We are delighted to say that the event is full and there was a waiting list.

The topics the event will cover are:

  • Epilepsy misdiagnosis
  • Epilepsy and behaviour
  • Describing seizures
  • Epilepsy – Isn’t that just seizures?
  • Impact of epilepsy on learning and behaviour
  • The link between epilepsy and autism

We are very grateful to Pam Morris, Nurse consultant, and Emma Tingley, the National Services Programme Manager for Young Epilepsy, for being our speakers, and to Janet Cobb for helping to organise and promote the event.

Beyond 10 June, we will capture the available information on epilepsy in young people with learning disabilities and or autism and make sure this is available on the BILD website for visitors and those looking for support.

We would like to wish the #107 Days Campaign every success.

You can check out the programme for today below, and join in on twitter. We’d like to thank the Housing & Support Alliance and the British Institute of Learning Disabilities for their actions.


Day 81: We won’t ever stop the bus #107days

Day 81 was adopted by Izzi and it builds on yesterday’s post Busking for Justice, while also standing alone (so you don’t have to have read yesterday’s, but really why wouldn’t you?). This post also includes links to awesome performances which are well worth checking out.

This is why Izzi wanted to support #107days and #JusticeforLB:

I’m struggling to know where to start, my whole life I have wanted to write and I always have plenty of middle but no beginning or end. Much like Connor’s and the Augustines’ stories, both ongoing and timeless. I wasn’t there for the start of either story and I know they will live on far beyond me in the hearts of all who hear them.

I heard about Richard, Sara and Connor before I met them. Back in 2007 the new fella in my life, John (aka Busker John/Kid Rage) as Richard’s new ‘employee’ spoke fondly of them and very highly of Sara’s lectures. I can’t remember when we first met but I felt like I had always known them and was immediately accepted into the fold. I am the baby of my family and as my older brother and sister grew up 5 years ahead of me I wished that I had younger siblings. Connor and his brothers and sister very quickly came to feel like surrogate little sibs.

At a bit of a hard time for me in 2009, returning to the ‘real world’ after travelling with John in India, straight into the recession, struggling over whether or not to be a traditional classroom teacher, Sara asked me to do some child minding for Connor and Tom and I leapt at the chance. Who wouldn’t want to hang out with those dudes of an afternoon.

Some of my fondest memories of Connor are simply sitting in the living room: Bess snuggled beside me; Stan adoringly attached to Connor’s lap; Tom on the floor with his Lego; Coach Trip, Police Interceptors or Horrible Histories on in the background. I used to watch Connor more than the TV, not to ‘mind’ him but taking delight in his absolute focus and dedication to the things he loved. I learned so much from our LB.

Actually I don’t think my career mentoring children in care would have started without LB and his family, and I know John feels similarly about his work. I definitely mentioned Connor in my interview. Real people, real emotions, real face-aching laughter and bundles of genuine love and care for friends and strangers alike.

We moved further away and naturally lost touch a bit but always revisited stories of Connor. I was thrilled when Sara started her blog as I could keep up with their lives despite the distance. Just like Beck from Day 60, it was the first and only blog I’ve had email alerts for. I would read out the stories to John and we’d be crying with laughter, then gradually pulling our hair out as times became increasingly difficult and scary. I wish I’d let Sara know more often how much their battle raged within us and about the thoughts and good vibes we were sending their way.

Then those words, seared into my mind’s eye, appeared in my inbox one sunny afternoon last July.

Never have any words affected me so completely or baffled me beyond any recognition or belief. I had to show John as I couldn’t say them out loud but he wouldn’t believe it was a real post for a long time. I rang my parents crying down the phone in a way I only remember doing as a young child realising that I could never be Peter Pan.

So that’s why I love Connor and his family so wholeheartedly and what made me want to do something, however small, for #107days. I owe Connor so much and he taught me to keep listening to and learning from young people.

To be honest at this point I think if Izzi had just shared that context it would have given me enough food for thought today, but no, context isn’t enough for Izzi and here her post continues with why she has adopted today.

Connor’s story needs to be shouted on the rooftops until something significant changes. I wish I held the magic wand. I was humbled and in awe of everyone’s creativity throughout this campaign and struggled to think about what I could do (beginning issues strike again!) I was very fortunate that the answer found me in a surreal, ‘this only happens to other people’ way.

Nearly 2 years ago, 364 days before Connor died, I took John to the O2 Academy Oxford on a whim to a BBC Introducing gig for about 6 quid. A band whose album he had just bought, We Are Augustines, (now just ‘Augustines’) were headlining. Sweet, we thought, we like the sound of them. It turned out to be one of the best gigs we’d ever been to. Despite only hearing a couple of their songs in John’s little green fiesta (which, incidentally, came to a sticky end on the M40 on the way to Connor’s funeral), I was bouncing away at the front and singing along in no time. To our surprise, the whole band came out afterwards and sat with us, chatting and just hanging out. Again, real people, real emotions and bundles of genuine love and care for friends and strangers alike. We listened to the album on the way home, completely pumped and blown away by the energy and emotion in every song.

We found out more about the band and learnt that a lifetime of tragedy and grief had been poured into this record, which went some way to explaining its gut-punching impact on heart and soul. (You can read more about their story here: Augustines) Billy McCarthy, the frontman of the band was in foster care in the US as a child which again struck a massive resounding chord on my ‘corporate parenthood’ strings (hate that phrase but the sentiment behind it is genuine).

I’m not one to exaggerate but if you’ve ever read Philip Pullman’s ‘His Dark Materials’ or watched the movie of ‘The Golden Compass’ the silence at the end of each song or gig feels a little like, I imagine, the intercision of your daemon. A little vital piece of you that you didn’t really know existed, is torn away and left exposed. I bought the (now vintage!) T-shirt, spread the word and started a fairly healthy obsession with their record. Like Connor with Keane (then drum ‘n’ bass!) I would listen on repeat, watch YouTube videos and basically never get enough of them.

Last year, John mentioned one day that one of their songs ‘Headlong into the Abyss’ made him think about Connor and he’d unconsciously adapted the words in his head. I realised it had also started to mean more to me and I would sing at top volume driving to work wondering how I could still see past my blurry eyes. The lyrics that resonated so much with Connor’s life were/became:

“We were headlong into the abyss…in a red routemaster [four-door sedan] and a kid that always questioned [stuttered]. We stole it for the feeling of stealing. And drove it like our days had been stolen…

Our wheels touched the highway we travelled on down from the valley that raised us up to shrink down. It gave us the drive to keep driving from dreary and dread, to make bets we could not afford to; Call the police! Call your shrink! Call whoever you want but I won’t stop the bus [car]! Call the police, call your priest, call whoever you want call in the National Express [National Guard] I ain’t gonna wait around, ain’t gonna wait around for some pill to kick in…”

Last month we were able to see Augustines for the 4th time, back in the O2 Academy Oxford, now just down the road having moved back. After another ‘is this really happening’ gig, Billy and the gang took to the streets (our very own Cowley Road) for an acoustic set then on to The Library pub for a final singalong. We were able to meet the band again, buy them a drink and sit with Billy into the early hours (on a school night too!). What I love about their second album is that their past experiences and grief run like a lifeline throughout, but there’s an overwhelming twist towards hope and the joy of living, especially in ‘Now You Are Free’, which I feel is mirrored by the hope and passion of this campaign.

I plucked up the courage and inspiration from #107days to ask Billy if I could share a very sad story about ‘Headlong’ with him. He listened intently and was clearly moved, drawing some parallels with his own personal story. Amazingly, Billy offered guest tickets to their final gig of the UK tour that Friday in my home city, Birmingham, along with the possibility of doing something for Connor during the gig. I explained how much that would mean to all of us and we left feeling rather stunned.

After a few emails with Billy I realised that it was quite an ask for them to change the very last UK show of their life-changing tour at last minute, especially as ‘Headlong’ was their opening song. I told him that even the offer was enough and he said he’d be around for a hug and a chat after. I don’t have to tell you that the gig was phenomenal (skipping over a brief issue with the guest tickets not being on the door!)

Day81_Izzi and Billy

Ever true to his word, Billy had more time for us than I could have anticipated (possibly not out of choice?!). In tribute to Connor, I gave Billy an LB bus postcard, which I hope will travel at least as far as New York with him (photo please Billy?!) and also a little Travel West Midlands toy bus. The bus was a gift from my oldest friend, Leanne Curl (who also came to the gig) when I moved to Oxford, in memory of all the buses we shared on our long trip to school every day for 7 years. We never lost the excitement of being upstairs on a double decker (to this day!) I asked Billy to hold onto it for me as it was even more special since Connor died; it poignantly found its way onto our bathroom sink soon after 4th July and became a bittersweet reminder of our favourite dude and his bus collection. I hope it has great adventures with Billy and the band, wherever it ends up.

So this is as good a place as any to stop writing, but it is certainly not the end and Connor, my little brother, I still see you riding off into the distance on the top deck of the U1; we won’t ever stop the bus.

A huge hug and thank you to John, who keeps me smiling even when I don’t feel like it; Leanne; Sara, Richard and co; Billy and all the Augustines for being the most ‘real’ band I know. And last but never least, Laughing Boy, for everything.

You can hear Augustines for yourself singing Headlong into the Abyss and see them after their Oxford gig in two street appearances, here and here.

Day 80: Busking for Justice #107days

Day 80 was adopted by John, variously known as Busker John or Kid Rage! John’s piece is one of two this weekend that offer a personal perspective from people who knew LB, and the lasting impact he has had on them. Here’s what John had to say:

So many of the contributors to 107 Days are so experienced and knowledgeable about learning disabilities and autism. I would like to add something about ignorance. I met Connor in 2007 and was, like most young people who didn’t know anyone like Connor, pretty ignorant about his experience or other young dudes like him. I learnt a lot within five minutes of meeting him; he liked asking questions, he had a sharp sense of humour and knew where my nearest coach company was. I didn’t know how to speak with Connor, (as if there was a way to do so that was different to anyone else). I was not wilfully ignorant, but had considered very little about people with learning disabilities due to having so little to go on. There’s very little air-time for people like Connor or their relatives. When there is, it’s usually about something terrible happening.

Due to a change in jobs two years ago I’ve learnt a fair bit about services for people with learning disabilities. I’ve learnt a lot from reading Sara’s blogging, and more recently other people’s. Among other things, the Justice for LB campaign sheds light on a health and social care system that revolves around the rhetoric of person centred care. From all these contributions and what I have seen myself, the system is not always good at hearing and more importantly considering the voices of people who are very vulnerable, or those who know and love them. I’ve seen how this allows ignorance to exist where people who are ‘voiceless’ need empathy and understanding in order to make sure they are looked after, safe and feel safe. If a dent is made in that ignorance due to 107 days then that’s one success.

I am proud to say I did know and learn from Connor…. we made each other laugh on a few occasions. The last time I saw Connor he had some more questions for me and we’d just had a big breakfast in Headington. A good last memory!

Day80_Busker John

Last week I busked for a while in Oxford.


I played some songs which Connor and his family like and which remind us of him. Apparently I looked a bit angry and gained the stage name ‘Kid Rage’ in time for the gig with The Amazing Geoffrey at Connor’s party on 31 May.

Day80_Party performance

One song I played always makes me think of what Connor’s reaction would have been to a red route-master pulling up outside his house on a hot July day last year. The song is about a young man who stole a car and “drove it like our days had been stolen.”* I think Connor would have wanted to take that bus and ride a long way with his family with no thoughts of the future or consequence.

The lyric that John references above is from ‘Headlong into the Abyss’ by Billy McCarthy, more on that tomorrow….

Day 76: Airing views #107days

Day 76 was adopted by Aisling and the team at Certitude who provide personalised support for people with learning disabilities, autism and mental health needs. It is worth acknowledging that when we started #107days a number of organisations rather tentatively got in touch.

Some decided not to publicly support the #JusticeforLB campaign, some decided to adopt a day but then cancelled (presumably when it became clear that we were not afraid of challenge or questioning the establishment) and some stayed the course. We are delighted that Certitude were one of those who adopted a day and have embraced the spirit of openness, transparency and learning that is so key to the #107days campaign.

Here’s why they are supporting #107days and #JusticeforLB:

At Certitude we were truly saddened to hear of Connor’s death and our thoughts are with his family and friends. As an organisation supporting people with learning disabilities and those who experience mental ill-health, we work to enable people to lead happy, rich lives. It is vitally important to us that it is the people we support who define what a good life is for them, and that they are able to express this. That Connor and his family felt marginalised, isolated and unsupported by the care provided makes organisations such as ourselves surely question the care we provide.

We were shocked to hear about the circumstances surrounding Connor’s death. That it was preventable has rightly made us look more closely at the support we provide: Are we truly doing the best we can for people who have epilepsy? How do we best support people, involving and learning from them and their families? How do we make sure we engage with all the services which provide support to people with epilepsy? As an organisation, we didn’t want to sit on our laurels. We wanted to use this terrible event as an opportunity to discuss whether we are providing the highest level of care and support to people.

This is what they’re doing with their adopted day:

On Tuesday 3rd June, we are holding an internal round table session to reflect on what lessons can be learnt from Connor’s death and to address how we best support people with epilepsy, balancing both safety and independence. Another focus of the discussion, which was sadly lacking in Connor’s case, is how we can ensure families are central to the support we are providing to their relative.


Chaired by myself (Aisling, their CEO), we will be sharing ideas on how can we ensure the support we give people with epilepsy is right for them, so we can we offer people the best possible care we can. We’ll be hearing from staff within Certitude working directly with people with epilepsy, as well as a family member who has a son with epilepsy. It will be an informal occasion where people will have the opportunity to air their views, whether positive or negative. I’m really hoping it will be an honest and productive discussion, where we will learn more about  challenges and issues , and explore ways we can increasingly work in partnership with people we support, their families and other professionals. We’ll also be showing the ‘Here comes the Sun’ film about Connor at the event and will be posting updates via Twitter during the discussion to continue to raise awareness of the #107days campaign.

At Certitude we strongly believe everyone has the right to a good life and receives the care and support they need to achieve it. We are wholeheartedly behind this campaign and hope that out of this tragic event there will be lessons learned far and wide to ensure it does not happen again.

We are confident that Certitude will have a great day, with a positive environment where negatives can be discussed as freely as positives and the focus is on what’s really important, supporting people to have a good life. We really hope that other people follow their example.

Day 19: ATUs – a tweet a day #107days

Day 19 features Sam who has very generously agreed to share her learning across #107days. She is doing this through a tweet a day, and so far it’s been fascinating what she has managed to share in just 140 characters a day. As with all contributors to #107days we asked Sam why #JusticeforLB mattered to her and this is what she said:

I and Doreen Kelly set up Beyond Limits nearly three years ago in conjunction with the then Plymouth PCT (now NEW Devon CCG) to set up what I now come to realise was an inspiration project to plan with the 20 people with learning disabilities and their families who had been cruelly placed in Assessment and Treatment Units across the UK, to bring them home where they wanted to be. Inspirational because the commissioners were taking a leap of faith, admitting they had got things wrong and would work in real partnership with us as a Provider, and families and people, for probably one of the first times.

This was not the first experience I have had of working with Assessment and Treatment Units having worked for the previous five years as part of the Change Team brought in to close Budock Hospital in Cornwall and transform their services and then managing for Bournemouth & Poole PCT the closure of their NHS Units. These experiences set a fire in my soul to help people get out and get a life, but the process has been long, hard and frustrating with fighting all the way against the blocks, crap systems and sheer discrimination that exist in the very services that are meant to be helping these people.

We have worked hard to set up tailor made services for people and they are now getting lives and what is more important lives that involve their families again. Every small achievement and smile that I see on a person or family member’s face makes it all worth it. A knock on effect is that we also see that the teams that support people in the personalised way we work also get great rewards from the close relationships they develop with people and they grow in confidence about what can be achieved meaning we are growing a small army of freedom fighters down here in the South West!

However, it was with a heavy heart and yet more tears that I came across Sara’s tweets and blogs in November of last year to be reminded of the scale of the problem and the devastating outcomes that will occur for as long as Assessment and Treatment Units still exist. The death of a loved one must be excruciating in any circumstance, but the needless and wasted life of Connor Sparrowhawk is a national disgrace and I could not but get involved in the campaign. The passion with which Sara has driven the campaign reminded me so much of all the families we work with whose resilience, against all the odds, has been the major contributor to getting people home. My small contribution to the campaign has been to tweet everyday on the things I have learned from the work I have done over the last eight years with Assessment and Treatment Units.

Beyond Limits is a small Organisation and that is how we will stay because to us small is beautiful and small means we can be there for each and every person we support, but the challenge is how to help others to do the same across the UK so when we get heartbreaking calls from families elsewhere we can confidently sign post to other organisations that share our values and will make things happen.

Finally, and just as important and crucial to a new culture that I hope is developing, is stopping the tap that drips people into these units. If the tap is turned off by commissioners Assessment and Treatment Units will not survive. Cultural change will then happen and as long as people think creatively and do not set up local Institutions instead. We then have a fighting chance to stop what happened to Connor ever happening again.