Day 77: Six degrees of separation #107days

Day 77 was adopted by Liz who has offered her thoughts on six degrees of separation, and how we can use it to support #107days and #JusticeforLB:

I started reading Sara’s blog after meeting her on Twitter through following somebody else who knew her. That is how Twitter works – we follow folk who follow other people we know and who we realise we have something in common with.

Sara was someone I wanted to know because I was doing PhD research around aspects of why the special needs domain is so problematic and I read some of her published work that resonated with me. In particular, she helped me with a minor dilemma when my PhD supervisor told me not to use the word ‘meltdown’ and Sara was able to point me to article she had written with ‘meltdown’ in the title.

As I read Sara’s blog, like many others, I was amused, challenged and inspired by her accounts of life with LB. When life got tricky, I was reminded of the struggles we had experienced with my son when we engaged in arm-wrestling with the authorities to get him the support he needed. My son was fortunate; he got a place in a specialist residential school where he was enabled to develop academically and personally. He is now living independently and studying for a foundation degree. But things could have been so very different when he was out of school and threatening to kill himself…

For LB and for Sara and her family things worked out differently. LB was a much loved young man who did not receive the care he was entitled to from those paid to care.

Last year, 4^th of June marked the day of my PhD viva. It seemed appropriate to adopt the anniversary of that day as my contribution to #107days because if I hadn’t embarked on that postgraduate journey, I would perhaps never have met Sara and never heard of LB.

But on the other hand, I might have done. Some years ago somebody came up with the idea that if you take any two people on the earth, they are no more than six acquaintances apart – there is more about it on Wikipedia.

By Laurens van Lieshout (User:LaurensvanLieshout) (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html) or CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0/)%5D via Wikimedia Commons

When I started to think about how to use today, I started thinking about who I knew that might not have heard about LB. What would happen if I told them LB’s story and asked them to pass it on to others? I started thinking about people I was no longer actively involved with, but I had known in the past and wrote a few letters – and I got some replies, including a couple from Bishops and one from a member of the House of Lords, each promising to speak to others.

So the challenge today to me – and to anybody reading this – is to go through our address books and identify people who we have spoken to about LB. They may be work colleagues (past and present), people we socialise with, former partners, whoever… Once we have a list of names, send an email, an LB postcard, a letter, a text – whatever is appropriate for that person – and tell them about LB, a much-loved young man who died a preventable death because those paid to care didn’t care. Then tell them about other folk, young and not so young, who suffer unnecessarily and about parents who worry about what will happen to their children if they are no longer able to care for them. Most importantly, tell them we can make a difference if we spread the word and demand change. Ask them to tell their friends, colleagues, neighbours and folk they meet in the pub or on the bus about LB and ask them to tell others too.

If we all tell somebody today about LB, we can get lots more people making a noise and demanding more caring and responsible support systems so that more young men like Connor Sparrowhawk don’t die. Let’s make sure Connor didn’t die for nothing! 

Over to you now. Get talking, emailing, sharing….

Day 70: Shadows of action #107days

Day 70 was adopted by Yvonne Newbold who wished to write this blog post to share some of her own personal reflections on LB and Sara’s experience, and the similarities to those of her and her son Toby. This is why Yvonne wanted to get involved:

I’ve never met Sara, nor did I ever meet her son, Connor (LB), yet the shock I felt when I first heard about his preventable death is something that will live with me forever, and which has developed into a searing sense of outrage and anger as I watch the NHS handling of this tragedy unfold.

You see, I also have a severely learning disabled son, who also has severe autism, and I also recently had to entrust his care to others due to my own ill health. His name is Toby and he is 20 years old. There is a real sense of ‘this could have been, or one day might be, our story’. I also know what it’s like to be fobbed off, discredited and abandoned by the NHS as Sara has been since LB’s death, because when you are a parent of a different child, these things seem to happen all the time.

Although I have never met Sara, there is an affinity which exists between parents of children with disabilities, an understanding that transcends normal communication, a sense that we each simply ‘get it’ in a way that the so-called expert professionals very rarely do. To me, LB, Sara, Toby and I, along with every family coping with the issues that disability brings, are all part of the same tribe, a family of sorts. What happens to one of us is personal; it hurts all of us.

This is what she has to say:

Something rather insidious has happened to our society in the past couple of decades since LB and Toby were born, and being a parent of a son who is reliant on the Statutory Services, I’ve watched it spread and become acceptable from a front-row seat.

A culture of fear has taken hold among those working within our health, social care and education services, a fear that paralyses them and prevents them from doing the job for which they are paid; which is to protect and support the most vulnerable members of our society. Instead this culture of fear has turned their priorities upside-down. They now seem to do all they can to protect and support themselves and each other, and maintain the reputation of the organisation they work for.

When organisations have their funding and future survival of services tied to the vagaries of abstract key indicator targets to the extent that we have allowed it to happen, there is a huge vested interested to paper over the cracks, bury any mistake that happens, and create systems that cover their backs rather than reach out to help those in most need. When this trend is also happening alongside a society becoming more litigious year on year, the focus becomes even more self-interested.

They have to keep up appearances make everything seem excellent and tickety-boo, with no room to admit that human errors sometime happen. The people who work in these environments are no longer able to make autonomous decisions; we have all seen the growth of the interminable meetings where even the smallest things are now decided by committee. Joint decisions are always watered down and become half-baked shadows of the actions really needed. No one is able to stick their head up over the parapet anymore and say something sensible, because they are all too scared. Using one’s own initiative is frowned upon but how can you truly care for someone in any meaningful way without being allowed to sometimes think on your feet?

No one takes personal responsibility in these organisations anymore because they aren’t allowed to. Meanwhile young people like LB die, because if no one takes personal responsibility, so no one can apply common sense, and it’s also, of course, no one’s actual fault.

The unspoken mantra is ‘cover our backs, cover our backs, cover our backs’. The staff feel compelled to collude with management to hide any weaknesses or failings. Reputation is king. Any weakness or failing that comes to light is minimised, or side-lined or hidden away. Truths are spun and twisted, any insider who tries to speak out is pilloried as a whistle-blower. If failings cannot be neatly filed away, they sometimes find a scapegoat, and publicly pillory them as well. No wonder the staff are so frightened.

The upshot is that staff bring that fear into every encounter with those in their care. The emphasis changes, again to protect themselves. For every few minutes they spend with those they care for, several more minutes must be spent writing down everything that happened during those two minutes, just in case something ever comes back to bite them on the bum sometime in the future. What they write doesn’t always reflect what did actually happen during those two minutes either; it has to be skewed to fit the text-book version of what would sound best.

So all the reports are written, all the boxes are ticked, and they can produce their swanky glossy brochures telling all and sundry how marvellous their service is. Their backs are turned away from those who really matter and meanwhile LB drowns, and countless others continue to be short-changed.

Our young people deserve better, and things must change for the better, too, and fast. The staff who work for these organisations don’t want to work in a culture of fear anymore either. The vast majority care passionately about making lives better, but their hands are tied by fear.

Mistakes happen, we all know that. When they do, parents like Sara deserve the level of respect that can only come from complete honesty, truth, compassion, empathy and sincere apologies. It is the only acceptable way to behave. Particularly in LB’s case, when that mistake was one that had been waiting to happen for far too long.

As Yvonne says in her post, this mistake had been waiting to happen, but not just that, now it has happened LB’s family and friends are left to raise funds to cover legal costs to bring Justice for LB. So, rather than use an image of LB for this post, I’ve used the party tickets, for the party night happening this weekend, Saturday 31 May and there is still time to get tickets and come along, all support gratefully appreciated.