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.

Chalkboard3

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.

Chalkboard1

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

Chalkboard2

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.

Day96

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.

Day96Bus

 

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 57: My son’s not rainman #107days

Day 57 has been adopted by John Williams, an incredibly funny man and casual baker  whose blog will make you laugh and cry: ‘John is a comedian and single dad. His son is twelve years old and autistic. He isn’t a genius. His only special power is making his Dad laugh. A lot’. We were delighted when John got in touch to offer his support to the #107days campaign, after all LB is short for laughing boy. LB, whose giggle captured the hearts of so many, so if you’re going tonight (or if you spend the day reading John’s blog – highly recommended) please laugh long and laugh deeply. It’s very special that we have a day of intentional laughter and stand-up comedy within the 107days.

This is what John had to say about getting involved:

I had been following Sara’s blog for a couple of months – it had been recommended to me by a friend. I was struck by the warmth of it, as well as the writing. Incidentally, this was, and still is, my favourite blog post. And then I remember the day Sara posted that LB had died. I remember the numbness that followed the initial punch in the kidneys, this strange feeling of mourning someone who you hadn’t met but you felt in some small way you knew.

As the days, weeks and months followed, and Sara continued to share their story, the treatment of the family by those responsible became difficult to comprehend. It moved from the realms of incompetency to something far more sinister. To this day I am dumbfounded by the behaviour of Southern Health in all this. On every level. They’ve become like the King Midas of healthcare, only in their case everything they touch turns to shite. I can’t even begin to imagine the indescribable pain of losing a child, but their behaviour and inability to take responsibility and even just-bloody-say-sorry is akin to continually poking at an open wound with a stick. Katrina whats-her-face, “Chief Executive of the Year”, bloody shame on you.

I suppose if I’m honest there’s a selfishness behind my getting involved in LB’s story. In many ways my own blog is the “acceptable” face of autism – heartwarming stories of the life of me and my son. At times it seems we live an almost Peter Pan existence, he’s the boy who’ll never grow up, and Dad’s so embroiled in the battle with the education system that he never thinks for one minute about the world beyond it. But LB’s story has brought things into focus. It’s made me confront my own fears for the future. The seemingly terrifying world of Adult Services beckons sooner than I care to acknowledge.

And so for Day 57, and my plans. I’ve written a blog about LB on my website. And tonight I’m performing a show at the Kenton Theatre in Henley that is dedicated to Connor. I’ll share his story, his video will be played and when his brilliant face fills the big screen and the Divine Comedy blares out across the auditorium the audience will be in no doubt as to why he was called Laughing Boy. I’ll donate my fee for the night and sell his postcards in the interval and generally pester and badger people like a great big pain in the arse to get involved and ensure they shout Connor’s name across the rooftops as they leave into the night.

We learned yesterday of the very sad death of Stephen Sutton, an incredible young man who has left a legacy that will live on well beyond his years. Well Connor Sparrowhawk was also an incredible young man, and we must do all we can to ensure his legacy lives on for a long, long time to come.

And so I’ll leave you with the same request I made on my blog this morning. Make a point of telling someone Connor’s story today. Set up reminders on your telephones 1, 5, 10, 20 years from now to keep his memory alive. Let’s ensure his legacy is to lead to lasting change for the young people and adults that follow.

Let’s keep saying his name.

Day57JW

Day 46: The violence of disablism #107days

Today was adopted by Katherine Runswick-Cole; when I asked her why she’d got involved with supporting #JusticeforLB and #107days, this is what she had to say:

I first met Sara at a Disability Studies conference, we were both studying for our PhDs. Meeting Sara was exciting because we shared the same research interests but also because we were both mothers to young dudes. Sara and I stayed in touch, wrote a couple of academic papers together and every so often we would find ourselves at the same conference and have a bit of a gossip about life, the universe and everything! In fact it was Sara who introduced me to the joys of Twitter and, of course, I followed her blog.

Like many other people who have been touched by #JusticeforLB, I never met Connor, but through knowing Sara and reading her blog, I felt as if I had. The stories Sara told with such love and humour remind me of my own dude, and her family stories so often overlapped with ours.

Katherine, has written today’s post with Dan Goodley (who you’ll also meet again on Day 100). This is what she is up to:

I’m now Senior Research Fellow in Disability Studies & Psychology at Manchester Metropolitan University and I’ve been invited to give a paper on the theme of disability and violence on 6th May, 2014 at the Norwegian Network of Disability Research 6th Research Conference in Lillehammer, Norway. The blog posted today, co-written with my friend and colleague, Dan Goodley reflects on some of the things I’ll be talking about in Norway, including #JusticeforLB.

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This is what they have to say:

The Violence of Disablism 

Like many people, we’ve been following the #JusticeforLB #107days closely. We’ve been inspired by the actions of others in support of the campaign and horrified by the revelations of the terrible treatment experienced by people with learning disabilities that continue to unfold as the #107days continue.

We’ve followed many of the blogs that have commented on the tragic death of LB including those of Chris Hatton, Rich Watts, George Julian, Jenny Morris and of course Sara Ryan‘s own powerful and deeply moving blog, and we’ve wondered what we have to add to what has already been said so clearly and carefully by many others.

However, it was Jenny Morris’ claim that Connor was a victim of ‘institutionalised disablism’ that prompted us to write this post. We agree with Jenny and her comments made us reflect on what we had previously written about disability and violence.

In 2011, we published an academic paper called “The Violence of Disablism” in the Journal of Sociology of Health and Illness. The paper was written as part of a wider research project focused on the lives disabled children (“Does Every Child Matter, post-Blair?: the interconnections of disabled childhoods”). Violence was not initially a focus for the study, but, sadly, in our work with children and families violence emerged as a distressing and disturbing theme.

We heard about disabled children being bullied on the bus, in toilets and on the street. We heard about families being marginalized and excluded because their children were “different”. We heard about schools where children were man handled and emotionally bullied by staff. We described this as the “violence of disablism”.

The violence that Connor experienced tragically ended in his death: the report of inquiry into his death documented that he was subjected to numerous incidents of ‘face down restraint’ in his 107 days in the unit. In the end his life was rendered so value-less that no one thought it worthwhile to check on a young man with epilepsy while he was alone in the bath.

The report of inquiry made it clear that individuals played their part in Connor’s death.  It is right that the staff members who left Connor alone to drown should be held to account, but there is a danger that if we focus our anger at individuals alone, then we will be failing Connor and all the dudes who continue to be subjected to the violence of disablism. Focusing on individuals allows wider communities to distance themselves from the bad acts of few bad individuals. Much of the response of the service provider has been to suggest that focusing on individuals means that we don’t have to pay attention to the multi-faceted, mundane and engrained ways in which the violence of disablism operates in peoples’ lives. We desperately need to address the systems and cultures that contributed to Connor’s death.

Winterbourne View and Slade House were located on industrial estates, how many other Assessment and Treatment Units are located on the margins of their communities? What other group of people, apart from people with learning disabilities, would ever experience a ‘stay’ or, indeed, live on the edge of an industrial estate? Currently, despite Winterbourne JIP, 1,500 people still live in ATUs, 14 of them are children.

As we saw in our research project, the processes that de-value the lives of people with learning disabilities are everywhere and they start when disabled children are young. To recognise that we live in a world that is inherently disablist permits us to start addressing a number of urgent questions:

  • Why are adults with learning disabilities endlessly placed in the periphery of our communities?
  • What kinds of things do we value about human beings and how might we broaden our values to include those human beings who might not fit with the ‘normal’ category?
  • How helpful is it to talk about normal? Might it be more helpful to think of all of us as abnormal, anomalous, different and divergent?
  • What needs to be done NOW to honour #JusticeforLB?

Katherine will be sharing this paper in Norway in a few days time; as the ripples of what happened to Connor, and the JusticeforLB campaign, spread ever further, it really is time for change. The final word goes to Katherine (and Sara):

In the midst of the tragedy and devastation that follows Connor’s death, I do believe that change is possible and that through the #107days tweets, blogs, papers, presentations and marathons, we can begin to build that change. So our post is written as we hold on to Sara’s words that “if anyone can effect change in the way in which learning disabled children/adults are treated, I’d lay my money on a bunch of (raging) mothers of disabled children”.

#RagingMother

Day 40: Musings from the Magic Roundabout #107days

We were delighted when Ermintrude offered to write a blog post for #107days. Day 40 shares her thoughts and musings, and we’ve named the post in honour of her pen name, but also in acknowledgement of the constant sense of being stuck on a merry go round in dealings with Southern Health.

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This is what Ermintrude had to say in support of #JusticeforLB:

I wanted to write something to remember and honour LB, his family and people who are in similar situations now. I wanted to rage against systems that allowed this to happen but as I’ve read people’s contributions, I realise I can’t add more honesty than those who have experienced the utter despair and despicable treatment in the hands of health and social care professionals.  So I am just pondering some memories, fitting them together and thinking about what I can do to promote better care and better systems for people who have learning disabilities and for all people who are subject to the vagaries of a disjointed and unempathetic system.  Here is my modest contribution.

When I was at school, we had weekly trips to a local residential home for people with learning disabilities. It was billed as ‘community service’. We could go instead of playing hockey. My aim wasn’t very noble when I volunteered, I have to say. I wasn’t very good at sports. Looking back though, at some of those afternoons, I remember how we didn’t really see an us/them and it became more than a way to avoid hockey. We laughed, we joked, we played silly board games, chatted about music and television and school. It became a fun way to spend the afternoons because we were simply hanging out with people who laughed at our jokes and who we enjoyed being around.

Looking back over the thirty years since then, I wonder whether this was really anything revolutionary we were doing. Or if we just need to stop looking for answers and try and find some of the solutions we have already found but just do them better.  I went to university and dabbled in a little voluntary work with older people. I joined one of those countless ‘societies’ which are on offer which did little jobs around the house for older, isolated people. I pity the poor women (it was mostly women I happened to visit) who had me wallpapering their front rooms for them but in my defence, I think, in return, we always chatted for far longer than we worked. Big society. Right.

And then past university, which is where I’m going to settle a while, I picked up on the voluntary work with CSV and went to spend a year in a residential home (with staff accommodation attached as it was in the middle of nowhere) for adults with learning disabilities and epilepsy.

It is here that I’m going to settle a while because it was where I learnt a lot about epilepsy, learning disabilities and the relationships between the two. Everyone who lived in the home had epilepsy. We were given core training in managing situations, particularly when people had seizures and as a new volunteer, while I was supposed to be doing the ‘fun’ stuff in addition to the staff – like taking people out in the local area, running games groups and discussion groups in the evenings and generally just wandering around ‘being sociable’, a big part of my morning routine was supervising baths.

I remember feeling quite awkward initially about having to watch people having baths. Of course, we did it as subtlely as we could. We had privacy curtains surround the bath with a small gap to observe and often I (as all the staff would – this wasn’t something different I did) we would chatter away to people as they sat in the bath, just making sure there were no long silences or that I didn’t monopolise the conversation too much. Always, we listened out for any splashes. I did have to pull the plug out a few times when people had seizures in the bath (that was the first thing we were to do). And thinking of a man, who drowned in an NHS run hospital where the care and supervision should have been there, I often thought back to those days when we would all be taught, from the very junior people like me how to manage seizures in baths, it makes me angry. That was 20 years ago.

I moved on after that job to work in learning disabilities services for a number of years until I qualified as a social worker and switched to work with older adults but a part of my heart stayed there.

So how have we got to a situation where services exist and an organisation exists which provides them in an NHS healthcare setting where the minimum standards were not met. We aren’t talking good quality care here, we are talking about providing dangerous and neglectful care. Care which contributes to the death of people, to the death of Connor.

There are a number of things which can be put into the basket.

Firstly, poor organisations delivering poor services. This is no excuse. This is not about ‘modern’ or ‘not modern’ ways. I was doing this in 1993. I’m sure there were many problems with the places I worked in but they provided far better care, 20 years ago, than Southern Health manages now. And the CEO talks of ‘not working in a modern way’. I wonder how often she has sat outside a bathroom, listening for someone in a bath and listened if they had any seizure that she would have to act on. I wonder. I wonder how often, and maybe I’m misjudging her, she has sat with the people who receive her services, in the settings and environments which have failed to provide the basics like safe seclusion facilities, like functioning defibrillators and listened. Truly listened.  While there are poor services and these services are allowed to continue to exist without censure, we can’t claim that we have a health service to be proud of. I worked in the NHS for many years. I am proud of the work I did. I’ve come across many many wonderful doctors and nurses but as an organisation, we have to be able to criticise parts without being made to feel we are criticising all. Some parts don’t function.

Secondly, and this is linked, poor oversight and lazy commissioning. Commissioners have a responsibility to check the quality of the services which they are paying for and to hold providers to account. They hold the purse-strings and have to be assured that they are happy with what is being provided. This is not about ‘avoiding scandals’ although I fear sometimes it might be. It is about seeking the best. There seems to be a lack of aspiration around some services for people with learning disabilities and my feeling is that this gap is particularly evident in health-based settings. We can talk Winterbourne endlessly and good work may be being done but we need to see more action and less rhetoric. The commissioning and commissioners are lazy because they don’t scrutinise or challenge.

Thirdly, there is the societal assumptions and expectations for people with learning disabilities. We talk about the watershed of Winterbourne but Connor died in the post-Winterbourne landscape. We talk about people moving nearer home as if that is a cure-all but poor care happens near home too. And not everyone has a home to go back to. I remember some work I did once with a man with profound learning disabilities who had no family. We can’t make assumptions about people having families who will advocate and fight for them. As a society we need to fight as strongly as those families might for those without. We fail miserably here. The expectations and assumptions are set low because there isn’t much thought or consideration for difference. Some organisations say the right words but there are often lazy assumptions made.

So is there scope for change?

I hope so. We have developed a health and social care system which is routed in jargon and exclusion. I worked in health and social care for 20+ years and it confuses me. How can we expect others to understand when we can’t ourselves. We have different funding streams and different funding levels for different things. Some pots are mixed up and some are centrally commissioned, some locally commissioned, some contracted out by provider services. Some are charged and some aren’t. What a mess we have created.  Instead of transformation being what it actually means, it has been tacking on poor systems (such as the extra complicated way that personal budgets have been rolled out) onto poor systems. Where is the complete redesign? The NHS moans and groans about too many changes. No, it’s too many of the wrong kinds of changes. There needs to be change. There needs to be integration but there need to be sensible people driving it. People who experience the services as recipients – not those cozied up to each other in Whitehall and local government/CCG silos chatting to the same people they have done for years and exchanging thoughts over golf in Surrey.

My hope is that we can drive these changes. For LB, and for all who need to have their voices amplified so that things can move on. Because they need to.

Day 37: When care goes missing #107days

Today’s post was written by Sally Donovan who adopted Day 37 to share a blog post on absent care and compassion.

Last summer I shared a table on a train with a man I’d never met before. It was a quiet carriage and he wanted to engage in conversation. I’m ashamed to admit that at first I was a bit reticent. I was travelling with my two children and between us we are used to attracting a bit of attention. I didn’t want to risk attracting any more.

He was a confident man, an academic who was interested in people. He immediately engaged with my children and was unphased by them. He was someone I’d have liked to have had a proper, loud conversation with, but we were in the quiet carriage and people were tutting.

I can’t remember how we got on to the subject, but he shared with me his experiences of visiting his mother in Stafford Hospital. As he described it, her care had been both severely lacking and delivered with conscious cruelty. He had been left unable to explain the lack of humanity in those supposedly caring for her and other patients and in those whose job it was to safeguard patient safety and communicate with the relatives of those who had suffered. What he described was not only an absence of care, it was planned cruelty and those who dared to argue otherwise were represented as being misinformed, unhinged and working against the common good.

Misrepresenting and discrediting those who act as advocates for vulnerable people is a theme that plays out with depressing frequency in the health and social care systems in this country. We the parents, the carers are misinformed, we are wrong, we are hysterical, we have got things out of perspective, we are awkward, we are standing in the way of normal service, we are disloyal, we kind of deserve the life we have.

Sara, the mother of LB (Laughing Boy) has found herself in this situation. I started following her blog just as LB entered the assessment unit where he would die either from ‘natural causes’ or from lack of care, depending on (in my non-expert opinion) who pays your wages. I was attracted to Sara’s blog because she writes with clarity, humour and compassion and because her photographs are lovely. Families of vulnerable children and young people get used to things being a bit crap, a bit worn out, a bit out-of-date and so it was refreshing to see something presented with style and grit. Little did I know that what I was following was a human tragedy about to unfold.

One of the ironies of health and social care is that when a tragedy takes place, a son dies, a mother is left unfed, the horror is then often made so much worse. Firstly, it seems that those with a professional role to play find it difficult to appear to care. They may care, but what matters is acting like you care, demonstrating it. Where ‘care’ is demonstrated it is around spurious things like reputation, PR and ‘patient confidence’ and I guess probably careers and budgets and funding. Underneath the guff, no matter how much of it there is, is the waste of a life and a family left in grief and loss. When the family try to get answers, the ‘bureaucracy’ effectively then tortures them by locking up communication and acting defensively in bizarre and cruel ways. It has systems which don’t lead anywhere, tests which cannot be passed, the simple and obvious is made complex and cumbersome until everyone apart from those grieving have all but forgotten what the original tragedy was. It leaves one wondering when personal morality became so negotiable.

Strong men and women, who lead a whole other life outside being parents and carers, who are perhaps professionals, experts in their field, well-practised, well-respected in what they do are stripped of all that as though it is of no import at all. Take off your robes of experience, your education, your talents, your knowledge and leave them in the bin at reception. From hereon in you are a nobody, you know nothing, you stand for nothing.

I was brought up to do the right thing, to tell the truth, to respect authority and to generally think the best of other people. I thought that ‘society’ generally acted in the best interest of its citizens and if you found yourself outside its protective walls then it was probably your fault.

Some years ago I went to the NHS for help. Our adopted child was displaying some extreme behaviours and to me (a non-expert) and to our Social Worker, was clearly traumatised and in need of some kind of therapeutic intervention. I sat in a crappy reception area, not yet realising that I had left the best of me in the bin at the door. We were seen by a consultant who either discredited or ignored almost everything I said and who steam-rollered over issues I had expressly asked him to take care over. In my opinion (as a non-expert), he was an egotistical, stupid, know-it-all, know-nothing rude little shit of a man and his conclusions were sloppy and entirely wrong. I walked out of that crap hole crushed but nevertheless resolving to never ever seek the help of the NHS on matters of child trauma and adoption ever again. I should have complained, but those who have a caring or an extra parenting role will perhaps understand why I didn’t have the energy to do so. An earlier visit to our GP had resulted in the word ‘depression’ being used. Not only was I ill informed, I was mad too. I had fallen through the protective walls of society. It had been incredibly easy.

Since I’ve come out of the fog of exhaustion and secondary trauma that can come with caring for children who are deeply traumatised by their pasts I have connected on social media and in real life with many parents and carers of children and young people with additional needs, including Sara and have discovered that many of us find ourselves living outside the city walls.

How does this happen? How do job-holding, tax paying, law-abiding citizens, advocating on behalf of their vulnerable loved ones find themselves cast out and their loved ones on the receiving end of poor quality care?

Here’s my (non-expert) take on it.

  • Experts and I guess I mean health and medical experts in the broadest sense here are designed to give information and not to receive it. Some of them are egotists. Egotists are not that great at valuing the talents and knowledge of others. It’s a classic power game – I have the power over you, you are the recipient of my wisdom.
  • The NHS is apparently sacrosanct and staffed not by fallible humans but by angels. Criticise its angels at your peril. They can do no wrong. Wrong is in the eye of the beholder. This lack of critical thinking around any service is dangerous.
  • Without strong and challenging leadership, tribes flourish in enclaves in health and social care, just like they do in other organisations. Tribes look after their own and don’t like to be encroached upon by ‘outsiders’ (the vulnerable people they are meant to be caring for and their parents). ‘You are not one of us. This is not how we do things around here. You are not welcome.’ Some of the members of the tribes are poorly paid and poorly educated, but I’m not convinced that’s an excuse for cruelty. Tribes operate under their own rules and codes of morality where it kind of becomes acceptable not to care and not to do things properly. If you’ve ever worked in a big organization, with lots of departments, you’ll know what I mean. Sometimes groups ‘go tribal’ because the organisation they are part of doesn’t value them. Sometimes it’s because its members enjoy being awkward and lazy and moaning about everyone else and they all egg each other on. They need to be encouraged to find alternative employment. When a tribe is in charge of booking out conference rooms it is annoying. When it is given responsibility for caring for a vulnerable person it is dangerous.
  • There is no ultimate case to answer. When a young person, or an older person dies unnecessarily in the care of the state no one is in fear of being sat in a dock and they should be. When the state fails to point the finger it is tacitly saying it doesn’t take cruelty or lack of care that seriously. Threat of legal action focuses the mind when morality and care have gone missing. Those who disagree with me claim that the threat of legal action would only encourage cover ups and discourage whistleblowers, like the current state of affairs doesn’t.
  • When vulnerable people are excluded from society to such an extent that ‘normal’ people never have to come into contact with them, they become something ‘other’; annoying to care for, or dangerous. It becomes acceptable to treat someone who is seen as somewhat less than human with a lack of humanity.

I asked the man on the train what if any conclusions he had come to about what causes some people to act in such a careless and cruel way towards those in their care. He shook his head. Everything he had thought he’d understood about people and compassion and care and morality had been over-turned.

You can read Sally’s blog here.

Screenshot 2014-04-24 03.18.36

Day 36: Cry me a river Katrina Percy #107days

Sarah got in touch with us over on facebook when she heard about #JusticeforLB. Sarah is a Canadian blogger, freelance writer and disability advocate who writes the Girl with the Cane blog. She was appalled at what had happened to LB and wanted to ensure that his story was heard on the other side of the atlantic, and so she kindly agreed to write the following blog for #107days, the context you are likely to be familiar with, but her thoughts and reflections are well worth reading:

I’ve recently been made aware of the story in the UK of an autistic young man that’s not getting any press that I’m aware of in the U.S. or Canada. I’d like to tell you about Connor Sparrowhawk’s story.

Connor, known as “Laughing Boy” or LB to his friends and family, was autistic and, from what I can gather, intellectually disabled (it’s difficult to tell when going by British sources sometimes, as they tend to refer to what North Americans call “intellectual disabilities” as “learning disabilities”). He also had epilepsy. In an interview with BBC Radio, LB’s mother, Sara, talks about how when her son turned 18, his normally happy disposition changed:

When he turned 18 in November, his behaviour sort of…he become very unhappy and anxious. And over the space of those 5 or 6 months, he became increasingly sot of unpredictable in his actions and very unlike himself, and he became very difficult for us to manage. We couldn’t get any help to look after him in school, really, and we were struggling to keep him in school.

LB punched a teacher’s assistant and was increasingly unsettled. The family felt that they had no choice but to send him to Slade House, a small treatment and assessment facility (seven beds) run by Southern Health NHS Foundation trust.

Sara talked to the BBC about her hopes the staff at Slade House would be able to figure out what was causing the changes in their son, and that they’d be provided with strategies to manage his anxiety and unhappiness. She feels that Slade House did very little to help either way. But if only that had been the worst of it.

LB was in Slade House for 107 days before he died on July 4, 2013. Sara got the phone call at work from a staff member when LB was on route to the hospital, she told the BBC. He’d been having a bath, and been found unconscious. Sara was told when she reached the hospital that doctors weren’t able to revive him.

The portmortem showed that LB had drowned, likely as a result of having a seizure, and was originally declared a death by natural causes by Southern Health NHS trust. However, an independent report found reasons to conclude otherwise, as indicated in this summary of the report’s findings on bindmans.com:

The report, completed by the independent organisation Verita, investigated LB’s death and found the following:

1. That LB’s death was preventable
2. That there were significant failings in his care and treatment
3. That the failure of staff to respond to and appropriately risk assess LB’s epilepsy led to a series of poor decisions around his care
4. That the level of observations in place at bath time was unsafe and failed to safeguard LB
5. That if a safe observation process had been put in place and LB had been appropriately supervised in the bath, he would not have died on 4 July 2013
6. That the STATT unit lacked effective clinical leadership
7. That there had been no comprehensive care plan in place for the management of LB’s epilepsy and his epilepsy was not considered as part of a risk assessment, in breach of NICE epilepsy guidance

The report follows a highly critical CQC inspection published in December 2013 in which the STATT unit failed on all 10 essential standards of quality and safety. Since that inspection report, the unit has been closed to new admissions.

Wow. Doesn’t seem to me like there’s much for the NHS to do but to try to determine what adequate compensation is in this situation (as if there is such a thing, when the death a loved one is involved), determine who was responsible and to what extent, “clean house” of those who were responsible, and commit to reviewing all the policies and procedures that may have contributed to LB’s death…and actually do so, of course.

But these things rarely happen that simply.

No Justice for LB
There’s not enough space today to get into the ways that justice has been put off for LB and his family, although Sara documents it all very well herself in her blog. Even a small facility like Slade House can be just as destructive as the larger warehouse-like institutions that are falling out of favour; it’s all a matter of attitudes and workplace culture. And like most stories involving professional misconduct in an institutional setting, this one gets uglier the more you find out about it.

I’d like to single out one person in particular.

Katrina Percy, chief executive of the Southern Health NHS Trust, doesn’t see why she should resign over this. After all, she’s apologized. She laments the lack of a “culture where people are able to be open when things don’t go as well as they possibly could.”

Cry me a river, Katrina Percy. That might go over if, after careful preparation and planning, LB had tried to go somewhere independently and gotten on the wrong bus to come home (he apparently loved buses). It doesn’t cut it even remotely when a young man with with multiple disabilities and epilepsy dies in the bathtub after a seizure because a medical unit (which turned out to be unsafe for patients anyway) for which you are ultimately responsible left huge gaps in both his care plan and its policies around observation during bath-time. And you don’t get to slam the family with vague comments about “people” not being “open” because you don’t want to take responsibility for this (or for the other two Southern Health facilities subsequently found to have safety failings after Slade House was investigated).

But then, as Chris Hatton has observed, all’s really not been well at Southern Health for the last while, has it? Quite sketchy indeed, Katrina Percy.

It never should have been acceptable for anything like this to happen, but isn’t this era where families couldn’t trust institutional care to meet the basic safety needs of their loved ones supposed to be over? Aren’t we supposed to know better, and act out of a ethos that demands we treat vulnerable people with dignity, and compassionate, responsible, reliable care?

I’m thinking about all the places that I’ve covered in this blog where people got hurt or died because disabled people were considered expendable and just given the absolute minimum of care. The abuses at Huronia Regional Health Centre in Ontario, Canada, happened a long time ago…Willowbrook State school in Long Island been closed for decades…but the abuse at Winterbourne View is still quite fresh in the UK’s memory, the New York State group home abuse scandal broke soon after I started this blog in 2011, and the men profiled in the New York Time’s recent “The Boys in the Bunkhouse” piece were only removed in 2009 from a horribly abuse group home/sheltered workshop situation that went on for decades.

This must stop.

The next time someone tells you that disabled people aren’t at risk in our society, point them to this video, and ask them what they think it would feel like to have a seizure in bathtub full of water and not be able to call out for help.

I know that it’s something that I don’t want to think about.

River Thames

Sarah drafted this post a month ago and has been (patiently) waiting for a #107days slot – what can I say, you’re all amazing and keen to get involved.

Since then her thoughts have become even more topical in light of Katrina Percy’s ‘performance’ at the Oxfordshire Learning Disability Partnership Board, see Gail’s brilliant blog posts on this meeting Dinosaurs and Elephants in the Room and How things could have been…and the float that sank.

Then yesterday KP faced more media attention after yet another critical report and a warning notice from CQC, and Monitor announcing they are taking enforcement action against Southern Health. You can read Sara’s latest post, Love tennis in health (and social care) towers, for her thoughts on this latest development.

To repeat Sarah’s catchphrase Cry me a river Katrina Percy, it’s time to do the decent thing.

Day 28: Drops of brilliance #107days

Day 28 was adopted by Kara2008, mother to Grenouille, who has a rare genetic rearrangement. Kara explains that she was motivated to get involved with #JusticeforLB because:

We’ve met many wonderful therapists, educators and medical staff since Grenouille was born, and the people who stand out, the ones we will always remember and be grateful to, are those who do their jobs – and then a wee bittie more.  Who take the time to notice that something isn’t quite right, and take still more time to think of a way to help fix the problem. Those little sparkles of flair, kindness, thoughtfulness, sheer brilliance, turn a typically difficult day into a day to celebrate.

When thinking of what to do for #107days a discussion was had on facebook about little acts that make a big difference, and that conversation has grown into today’s #107days challenge:

I’d like to invite dudes with additional needs, or their parents, to share with us the brilliant little things that people have done to help them.  If we can collect at least 107 Drops of Brilliance, then perhaps they will be enough, pooled together, to give everyone a chance to reflect on what good practice really looks like.  You can post your Drops of Brilliance here in the comments of this post, or on the Justice For LB Facebook page.

raindrop shamrock

Kara has kicked off our #107days drops of brilliance with one of her own:

Amongst a myriad of medical conditions, Grenouille has a growth problem which results in a tiny frame and weak muscles. To be able to concentrate and learn, Grenouille needs to sit stably, which means having thighs parallel to the ground and feet flat on the floor. But when we went to school for the first pre-Reception Induction Day, we found that even the minuscule Foundation Stage chairs left Grenouille with legs swinging, and trunk and head wobbling. The classroom staff ransacked the school furniture store for footstools, but none was right, this one was too high, pushing G’s knees up to armpit height; that one was too light and kept skidding skittishly out from under G’s feet; the third was a typist’s swivelling footrest, which was so unstable that it nearly upended G into a toy-bin.

Just then the caretaker came rampaging in, wanting to know who was raiding his furniture store. He swept all the unsuitable footstools away and returned, grumbling, with a selection of telephone directories in various thicknesses, which he arranged and rearranged under Grenouille’s feet until they were just the right height.

When we went back for the second Induction Day, the following week, I expected to see the pile of directories again, but no, Grenouille now had a custom-built foot platform. After we had left on the first day, the caretaker had measured the stack of phone books and, using stout 1.5cm plywood, had made large, shallow, open-bottomed box to the same height, neatly covering the plywood top in an offcut of the classroom carpet. It was perfect – too heavy to slide about, the carpet muffling any noise from G’s feet and providing a non-slip surface.

Of course, eventually, Grenouille did grow, and needed a lower platform. It wasn’t a problem. Without being prompted, the caretaker would turn up with his assorted phone-books at the end of every half-term to do a spot of measuring, and if the platform proved too high, he just sawed a centimetre or two off the bottom over the holidays. Myself, I’d have been reluctant to destroy by half-inches something that I’d made with such care, but the caretaker, by now G’s friend Richard, positively relished the measurable progress that the gradual dismantling of the box represented. At last, all that was left was the top of the plinth, which Richard ceremonially binned to cheers and applause from the entire class once Grenouille had, finally, outgrown it.

So that’s Kara’s and Grenouille’s Drop of Brilliance and we can’t wait to hear your stories of kindness, brilliance, ingenuity, adaptions or special consideration that make your lives easier. Feel free to share a story about a person, or about a particular location or venue, or exceptional service, anything really, but this challenge is all about the positive. We can’t wait to hear what you have to share. If you blog and would prefer to write in more detail please do and post a link in the comments. Thank you.

Thanks to K. Cusick, of Daffodil’s Photo Blog, for the use of the photo in this post. Last words to Kara:

I wanted some brilliant raindrops, and I wanted them on a shamrock, partly because we have been so lucky with people willing to drop brilliance into G’s life, partly because of the heart-shaped leaves, but mostly as a reminder of LB’s love of Ireland.

So please do get sharing your drops of brilliance, and spread the word of this challenge. Thank you.