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.
#107days 
Thank you LB for reminding me that segregation and exclusion is still and will always be dangerous and life threatening. I wish with all my heart that the hate and human rights violation would not have costed you your life. I promise that I will do anything in my power to let your story be heard and work towards a society where disabled people don´t have to be afraid of loosing their life because of lack of independence, access and self-representation. To your family I want to say; thank you for using this devastating experience to change people (like me) and the world.
It has blown me away that such a horrendous event as the preventable death of a young, viberant man has brought so many people from different walks of life together in such a passionate and loving way. These people and this campaign has had more impact on changing crap use of ATUs than years of waiting for the system people to change it! But to me the most important thing about the campaign is seeing other families who have been in the same situation as Sara or are still in living hell with their child in an ATU get strength, come forward and grow in confidence about shouting from the rooftops that it is not acceptable and they are not putting up with crap anymore! Thank you for allowing me to be part of all this. Sam x
I’ve been a campaigner for 15 years but I’ve never seen anything like 107 days. Sara, George and everyone involved have finally fulfilled the promise of social media campaigning – by challenging everyone’s righteous anger about a preventable tragedy into real actions for change at so many different levels. The main thing I’ve taken away is to have something I’ve long known reinforced – the only people who are going to change the world are parents, families and the dudes and dudettes themselves. This is how we do it – together.
#justiceforlb has been the most inspirational, moving experience. It has given me so much hope, seeing what can be achieved when people come together. This is the real modern way.
#justiceforlb is a powerful reminder that if enough people care anything is possible. The creativity and passion is inspiring.
I never met Connor but thanks to the campaign his amazing family launched, I now miss him and feel sad he no longer graces this earth. My heart breaks a little every time I think of the terrible circumstances of his death. His family have responded magnificently as they live through the first year without their wonderful dude. In spite of the searing pain of grief and loss, they have brought love to the fore and gifted the world with Connor’s wonderful being.
This campaign has brought something good to the world by bringing together so many people who want the discrimination and oppression suffered by disabled people to stop. People who want love and compassion to take over from carelessness born of astounding arrogance. There are so many wonderful things to say about the campaign but of all those things my favourite is the way the campaign has allowed love to shine through when it would have been so easy to allow pain and bitterness to dominate. I can only thank you all for making that happen.
My thoughts and love are with all Connor’s family on this, the first anniversary of his death.
love Pippa
This is DIY campaigning at its best – and therefore has a resonance I could not have ignored. It has been so very moving and heart-breaking, yet hugely inspirational to me and my family. We will be thinking about LB today, and all the other young dudes – and we will keep fighting, raising awareness, stamping our feet and generally being the thorn in the side of those who won’t/don’t/can’t seem to get it: love, respect, kindness to all xxx
16 Brownies and Guides in Nelson, New Zealand now know what to do to help someone having a seizure. They also found out about autism, visual impairments and what it feels like to rely on someone else to feed you. LB’s legacy – they all know how dangerous water can be to someone with epilepsy. As for me, kia kaha (stay strong) to Sara and all those families whose dudes deserve so much better.
My thoughts are with all of you today and I think the campaign has been inspirational for all,a chance to share with many and a chance to reflect on a lovely young man who won’t be forgotten It reminded us of how much he was loved.It also reminds us of how important it is to have justice and fairness to protect the ones we love
Suzanne xx
I have been following and spreading about LB since I heard. Having a disability myself and working in care for nearly 20 years I have sadly seen it all but what happen here was unaccepeted. I remember doing voluntary work with students at mencap holiday and these volunteers have no experience but did have other skills such as common sense, passion, caring and most of all treated people like human beings. Since 1998 I have worked in care and seen very bad practice but when reported nothing done. This LB campaign hopefully even know very sad will open minds and changes will come into play here. I think organisations use key words such as person centre but how many of them young dudes get to do what they want? I think tis campaign should open people eyes of care and what it should not be. Very inspiring and for those organisations that do great job should keep it up and those who don’t need to change. As person who been in special needs system I have been lucky to express my views however those in these assessment units may express but do not get listen to and that is wrong.
Thinking of Sara and family today. Losing a child in the care of an organisation that was supposed to help and protect is unforgivable. But this wasn’t simply about a single unit – it was indicative of wider policy failings & societal indifference. The #justiceforLB movement has challenged the unacceptable status quo & is showing us in a truly inspirational way that things should, and can, be different. More to come in buckets (I hope).
The blog fills me with inspiration to make things better, change things and challenge what’s not right.
This campaign has inspired so many. Today we stand with you together honouring a young man who has become a lightbearer, a way-shower, for all young dudes. I believe everyone who has participated in some way, feels that something could finally change. There is such a groundswell of solidarity and energy that it cannot be ignored, and all the positive actions from this campaign have given me real and tangible hope. For a parent of a 10-year old dude (he is called Sami and he, too, is a brilliant artist), the future is mostly frightening and filled with worry. #justiceforlb has given me hope, and for that I thank all and everyone.
I hope that the result of the courage of LB’s loved ones and the action of many people who have connected and supported this campaign is that no other young precious life is lost in this entirely preventable way. Compassionate, mindful care must be at the heart of our healthcare system and society at all times without discrimination. Without this what do we have left?
LB has shaped my nursing practice. I will continue to fight to raise awareness. And every time I see a double decker bus I will remember him. Rest in peace Connor your memory lives on.
A beautiful young man, a preventable pointless death and the instinct to close ranks and protect those to blame. This campaign is helping to show that honesty, transparency & humanity is the only way. I cannot believe the strength of Connar’s family, I believe it will give others strength. I wish them peace in the future.
An inspirational campaign. The breadth of support was encouraging, it was good to see the CQC sponsoring a day. I will remember LB and keep pushing forward.
A daily reminder of how much has yet to be done for young dudes. The campaign has made me more determined to work with our commissioners to bring people closer to home after Winterbourne, to safe places they would choose to call a home… Never forgotten.
LB and his family have been denied so much. A campaign of support to achieve ongoing and sustainable changes to the lives of those, like LB, who have so far been seen as insignificant or challenging is amazing. We talk about LB alot and wish his family and friends strength, love and truth x
Thinking of Sara sand family today, your love for Connor shines through always. It shouldn’t have happened, ever, but I hope that the momentum that has happened behind this campaign can be taken forward and we can have real, lasting change for all the dudes
What a horrendous year it must have been for you all – but what inspirational people to keep this story in peoples minds, to keep putting it out there to draw attention to the fact this sort of imprisonment and lack of care is still going on in our country in this day and age.
This campaign has been inspirational, heartwrenching and heartwarming – what a wonderful young man Connor(LB) was. Your continual fight for justice is wonderful – just so sad it needed to happen at all 😦
I’m in genuine awe at the positive and hopeful way that #107days has emerged. It reminded me that so many people see the need for change and want to do something to bring it about. Glad to have been a tiny part of it. Next step for me is to set up a forum for people to share experiences of trying to make parity of healthcare a reality for people in care settings.
…and I’ll never hear National Express without thinking of LB
Out of all this sadness I have seen such strength and passion from people from all walks of life who actually care about the people ( dudes & dudettes ) we love most. I have also seen a great gap in the market for an independent ” overseer” other than the CQC, to remind both LA/ CP`s that they should be ultimately responsible for their actions big or small,( i.e. no get out clause.) I personally from this want to see the end of “no voice no choice” attitudes forever. With greater and easier powers of prosecution for all LA/CP`s who breach all / any Act`s made in parliament that are designed protect the vulnerable. I would also like to see more help for any family wanting to take legal action against LA/CP`s not doing their job according to the law and guidelines, without question.
This whole 107 days and the reasons behind it should be a learning curve for everyone and anyone who say they “care” for our family members in our absence to get it right.
My thoughts go out to Sara, Rich and family today, and from now on every day. Lets hope that LB did not have to die in vain, or indeed any other precious family member.
#107days has shown me how far there is to go but how many people are fighting for change.
Thank you LB for showing me the power that good people can still have. Thank you for showing me how a family’s love knows no boundaries.
A late comer to this campaign, but not the cause, I dedicate a post today about a journey from indifference to action. This post tracks the period of 8 days in June – from day 1 when I recognised my indifference, accepted it and then did something about it. And it’s only just the beginning… http://jessflanagan.co.uk/justiceforlb-an-end-to-indifference-an-8-day-journey-to-107days/
Sara and all at the JusticeforLB campaign. You continue to inspire and the work is NOT OVER. We’ll quote one of our daughters who said this week – ‘out of something bad so many good things have happened’. We are certain this will not comfort Sara and her family really but the sentiments are there: LB you ride on our shoulders every day, reminding us with a whisper and a prod that we will fight disablism together – Dan, Rebecca, Ruby and Rosa xxxx
When I find myself saying, “Somebody ought to DO something”, another part of my mind reminds me, “Since you’re the one who’s noticed, that ‘somebody’ is you. Get on with it!”
Today, however, does not feel like a day for actions. Today is a day for simply holding LB in mind, and for giving his family as much space and privacy as they want for remembering and missing him. We won’t forget him either. Thank you, Sara and family, for letting him be part of all our lives.
http://wp.me/p4qWcp-hK
#107 days shouldn’t have had to happen…the resilience and strength to fight against what did happen has been extraordinary. Nothing flaky here…May LB be forever remembered as the dude whose life (and preventable death) provoked changes…serious changes…
Hope that when the 107th day has passed, the indomitable spirit remains despite the grief.
May buses and Eddie Stobart be endless reminders and kicks in the gut to everyone – a permanent memory of LB.
I want to embrace you all in a huge hug and never let go….(however impractical that may be!)
#JusticeforLB has been an Incredible journey of hope and action. Thinking of Sara and family today, hoping you can take some time off, to return re-energised and keep this going beyond 107 days for LB and for all the others who need to see a permanent change. Well done team – you’re an inspiration.
I have always passionately believed that, to get through, I have relied on angels more than ‘services’. Those unexpected people who just get it….the ones who demonstrate the type of care you can’t buy, train up or fake. 107 days is all about hundreds of angels coming together for Connor and his family. An evolving, organic force which symbolises the power of acting together, using our vastly different talents to tell Connor’s story, offer hope to other parents struggling against the tsunami of ‘system Indifference’ and, most of all, to prevent the preventable. 107 days is stuffed to bursting with angels. 108 and beyond will be more of the same.
Wanted: NHS Mental Health with Learning Difficulties Professionals (all levels).
Qualifications: Initiative, common sense, dedication, energy, creativity and angellism*( oh, and all that theoretical, training stuff).
*If you have to google don’t apply.
My thoughts are with you all. Thank you LB for showing us what being a decent human being is all about. My own son has difficulties too and we have our own battles. The campaign has given me more strength to continue with those x
I never met you LB. but I will never forget your wonderful smile and how your fantastic family and friends let us into your life.
I feel we should judge our society by how they support and treat the most vulnerable , they let you and your family down badly LB.
I will personally strive to bring about the much needed change to stop this happening again, I wish your family and friends the strength to now face the future without you, I know you will be in many peoples hearts forever.
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Amazing love and support! That this happened to LB & his family in today’s world is beyond tragic for us all. Each one of us in our everyday lives need to stop, look & listen to what is going on around you and gift the world with action! You are an amazing Mother and LB’s legacy and the lessons and awareness his incredibly tragic passing created live on. Xx
This campaign and the preventable death of your cherished son will stay with me and others for some time to come (not least as the hard work aint over yet), but Connor will carry us forward and keep us in check and hopefully remind us to have a laugh along the way.
I have been moved by many aspects of the campaign and the actions of the people who have got on board. This has been stark against the failings of the Winterbourne Improvement programe and the inaction/wrong action/what action?!?!?! from Southern Health. Like many others I won’t look at another London bus or Stobart truck in the same way again. I will always smile when I see them.
Whether it is a recency effect, I don’t think I will ever forget Sara’s words in her interview about Connor (on the healthwatch website) about her worry of who will look after him when she is not there. This resonated with me on a number of levels. It hit me in the gut and in the throat, in way that I can only imagine Sara, you and your family have been feeling on a day by day, moment, by moment basis. I am sure it is not a feeling you forget, or even ‘move on from’, but by god have you taken that and turned it into something powerful. Something for all dudes to benefit from.
Connor has left a legacy, one that cannot and will not be forgotten. It is powerful. It will drive many people into days of action, beyond the last 107.
My thoughts are with you today.
First off, well done everyone on keeping LB’s memory alive and focusing attention on the shameful manner of his death.
My own Dude died in 2012. He died at home very quickly and unexpectedly. Since then many people have said to me how it must be the worst thing in the world to lose your child, and indeed it is. But I have discovered that there are degrees of awfulness within this. It’s one thing for your child to die at home, but for your abiding memory to be the knowledge that he was happy until the end, well cared for, as independent as he could be, and (frankly) lord of all he surveyed. A good death, if you like. Then I think of LB, neglected and dead at a supposed ‘care’ facility and quite honestly, my heart falters. A bad, bad way to go. Let the #107 days campaign continue, and be the focus of parent-led expertise and good practice in caring for all people with learning disabilities.
The impact of Sara’s post about LB’s death last year was shocking but that was nothing to the rage and impotence that was to follow. I thought: how could this happen and why aren’t politicians, bloggers, political commentators, journalists and charities shouting about this appalling and preventable death from the rooftops? Why the indifference? Why do some notable tweeters ignore requests for RT s? If this was a death in custody or in some other form of state detention there would be much more of an outcry from the usual sources. Why not for LB?
And then I thought perhaps the indifference masks something much deeper, something more significant. A fear. A fear that this is ‘too political’, a fear that the institutions we have built for ourselves and our own concepts of good and bad in terms of state action (police brutality = bad: NHS indifference =ignored) are based on false assumptions. But perhaps it also reflects the prevalent paternalistic culture towards disability, a culture which sees disabled people as something to pity and to donate to and not as individuals with rights. A culture which sees provision and care as something to be fought for and justified and not as something to which people are fundamentally entitled to. A culture which fails to see that disabled people have the same rights as everyone else. As the mother of a child with autism and sister of a brother with cerebral palsy, this outrages me to my core.
But this campaign has stopped those feelings of impotence and brought hope. It has, following the incomprehensible and needless loss suffered by Sara and her family, demonstrated what people can do when they stand together and shout as one. We don’t need people to speak for us and for our people. We speak for ourselves. And with amazing vibrancy and passion.
LB’s drawing of a bus sits on my desk and I think of him and his family daily. My boys talk about him: at 8 and 11 they are filled with righteous anger at his death. I hope in some very small way that that is part of LB’s legacy and I know that will never give up the fight for justice for LB and all the dudes
Thoughts are with you – so many thanks for sharing and making a difference. As one of the comments above makes segregation and exclusion are dangerous – building more welcoming communities for all is part of the way forward.
I’ve thought about LB every day since he died, and talked about him often. The #107days campaign has spread the word and allowed people to be involved, inspired and inspiring. I just wish it hadn’t been needed, but that, because of it, no other dudes will die in the care of an ATU. Today especially I am thinking of LB’s wide circle of family and friends. xx
LB’s campaign has been amazing and has achieved far more than I thought possible. Sara’s generosity in sharing her thoughts and LB’s personality with us all is deeply moving and it seems like we all feel we know him somehow – I was on Oxford yesterday and every bus I saw seemed to shout his name. I do hope that people maintain the momentum and fight the monolithic barriers to change for the many who still face the dangerous experiences of the ‘care system’ (that many of us can’t begin to imagine). As a former whistleblower and sister of someone who has endured this for 40 years I hope this anger remains and that we can use whatever roles we are in to fight the reality of this situation, putting this first before our own interests in keeping quiet.
The great love we have for our children fills our hearts with passion and our lungs with shouts. The campaign drew me in about day 25 and made me think of my own dear Katy, about the age of LB, who died two years ago. I knew Slade House well and am distraught at what has happened there in recent times. My heart goes out to Sara and LB’s friends and family. 107 days has been inspirational, influential and important. I have never seen a campaign like it (and I have been involved with lots). My great hope is that the fight and rights encapsulated in the campaign, and in previous work such as Valuing People, might change things for good for all our treasured children and dudes.
The message I take from this campaign is that all of us have an absolute duty to speak up for the vulnerable and for those who cannot speak up for themselves, for those who aren’t listened to, and for those who aren’t heard. And we have to fight every day and with all of our hearts and our capacity for values-based nursing and care – for nursing and care that puts compassion at its heart, and that cares about people more than it cares about profits and corporate mission statements.
Amazing, incredible, inspirational… just some of the words written above to describe the #107days campaign, all appropriate.
To take a situation as tragic as the passing of Connor and turn it into something so positive is a testament to both Sara and family, and all the people that have helped with the campaign along the way. From bike rides, dedicated buses and Glastonbury flags, to extreme haircuts. Raising awareness of the inadequate care that so many have received and are still receiving now, but with the spirit of LB. His humour, his drawings, his joy of buses, all played an integral part of the campaign. It all goes to show what a cool dude he was, and what a phenomenal effect he and his story have had on people.
Tonight I know I will be sitting down with a glass of something and reading through all the comments here and on the other social media sites in awe at the scope of the passion and determination to make things better for all the young dudes out there.
Having shared your journey through this campaign I have at times felt helplessness and great sorrow. I have also felt a degree of anxiety as I have a 25 year old son in a residential placement who although well placed and looked after by well trained and lovely staff is so vulnerable and I worry about him every day. As with Winterbourne it is disgraceful that action to address serious shortcomings in Care seems to need someone to suffer sustained and extreme hardship or die before anyone will do anything. We have to change the agenda and make sure that each person is at the centre of everything and that Care providers can prove that they are doing what they say they are doing. Glossy brochures and promises mean nothing and we must insist on robust systems, snap inspections and more involvement by experts by experience (us) to be able to influence how our young people are looked after.
We must also make sure that all staff are competent and for me this means that you need not only training but also experience of the person that you are looking after before becoming responsible for their care. I think there should be a National framework which states minimum standards for this to stop the use of, for example, Agency staff being parachuted in without ever having met the person with probably no idea how best to support them.
Providers must accept a responsibility to treat their staff responsibly and in addition to paying them properly must provide support and well as training so that staff feel valued and looked after. Staffing must include contingency to avoid a shortfall of Carers at all times. Commissioners beware, the lowest cost tender is probably not anywhere near good enough and the people who will ultimately pay for this are the ones being looked after. A recession is no excuse to put vulnerable people at risk.
Finally we really need to make sure that the law allows owners and senior executives to be prosecuted for failings as well as those lower down. At the moment they can literally get away with murder and this must stop. Though not relevant in this case, Care is increasingly being seen primarily as a profit making venture with the balance sheet driving everything. Safeguards need to be in place to again make sure that a high standard of Care is the thing that matters and not the bottom line. Every Care home should have a sign outside that reads SPECTULATORS NOT WELCOME HERE.
Really finally I just wanted to say how much I admire you for creating and driving this campaign, it has been so inspiring to see how LB’s story has motivated so many, probably thousands of people, to make their voices heard and I am certain this is going to make a big difference for us all. Thank you from me and thank you on behalf of my son as well who like so many others will I am certain benefit through hugely increased National awareness and reflection made possible by your stand.
I’ve been toying with the idea of studying for years (I “knew better” at 18 and didn’t go to uni, despite having a place) but I haven’t been able to decide *what* to study. Over the course of the #107days I’ve been reading more about the issues surrounding LB’s “care” (or lack thereof) and have decided that I’m going to register on an OU course to study Health and Social Care. I want to write policy, to make decisions that actually HELP people, that include families and friends, that WORK. #JusticeforLB has given me the kick up the bum that I needed to actually get out there and Do It. I’m sorry that it took something like this, but hopefully in a few years I’ll be in a position to ensure it never happens again
There is nothing gained from this experience that gets anywhere near the sense of loss. If only it hadn’t happened and LB was still alive. it’s still heart-breaking. Notwithstanding that, the experience has taught me so much about family, about acting for what is right, about understanding those in our communities who need us (we all need us!). On the trivial side I just uploaded my first fb profile picture and I made a crumble a year ago for the first time. I can’t make it better but hope to help in whatever way comes along.
With my respect and in order to improve conditions for young people i add my name to this campaign for recognition of LB and his kin.
The #107campaign has shown that there are many fantastic supportive and compassionate people out in the big wide world who have a wealth of knowledge in the area of learning disabilities.. If only this knowledge and common sense could actually be listened to and used constructively. We would then have a service that delivers quality care instead of which we are still subjected to organisations that blunder on and deliver the absolute minimum ticking boxes along the way. I hope that those organisations have read this blog, taken note that our young dudes deserve more and actually DO SOMETHING ABOUT IT instead of smiling and agreeing and then doing nothing. Connor and his family deserve so much more.
Just thank you for letting me part of #justiceforLB #107days No other words right now
People count. Feel very lucky to have met Connor. Not to mention Sara and Richard. Who are really making this count, along with so many other voices now. Onwards.