Week 12: I wrote 11,962 words on Southern Health’s crap communications so you don’t have to #107days

Ally has written a corker of a blog post for Week 12 that needs no more introduction:

Hi everyone! Just to give a bit of background to this blog, I’m Sara’s niece and I’ve just finished my linguistics degree in Leeds. During my final year at university, I had to write an 11,000-word dissertation. Or more specifically, I wrote about the transitivity and non-apologies in the communications from Southern Health to Sara, Monitor and the public, and how these structures were manipulated to assign responsibility for the positive and negative actions detailed in the texts.

The transitivity system deals with where participants are positioned in a sentence, and this can be changed to emphasise or hide these participants. For example, in an ‘active’ sentence like Sara wrote a blog, the ‘actor’ is Sara, and she writes the ‘goal’, which is the blog. Sara is positioned first in the sentence, so she is emphasised. In a ‘passive’ sentence like The blog was written by Sara, the blog is first and Sara is second. This hides Sara’s responsibility for the writing behind the blog itself, so the blog is emphasised. Passive sentences can also appear without an actor, e.g. The blog was written, where nobody is shown to be responsible. Active and passive sentences are very common and don’t always suggest deliberate manipulations of participant responsibility… but often they do, particularly in newspaper reportage.

Non-apologies are especially common in situations where public trust is at stake, such as from institutions and politicians. Non-apologies suggest that they are following social norms and expectations that they will apologise for what is perceived to be some kind of offensive act, but actually avoid performing a proper apology. Non-apologies come in several forms, but in general terms they can suggest that an apology will come or has already come, e.g. I want to apologise, or I have apologised, which doesn’t actually perform the act of apology. Non-apologies can also be selective about what they apologise for, such as I apologise for this distress, but not the act that causes the distress, or I apologise if this caused any confusion which dismisses the idea that anyone should have been confused.

The texts I analysed were the infamous Katrina Percy letter, the follow-up letter from Simon Waugh, the briefing note to Monitor (all on Sara’s blog), and the public statement that was issued after the Verita report was published. From these I chose the statements referring to positive events, such as improvements to services, previous good care etc., and the negative events such as LB’s death and the general failings of the unit.

My analysis compared the frequencies of features across positive and negative statements, including:

• Who was emphasised as being responsible and who was hidden in positive and negative statements
• If the participant responsible was hidden then which participant could be inferred from the surrounding context
• How often participants were shown to be doing actions, and how often actions were done to them
• The non-apology strategies present in the text

I won’t go into huge amounts of detail with the analysis, but there were pretty interesting findings (in my opinion!). In terms of transitivity:

1. Passive sentences (backgrounding responsibility) were more common in statements regarding positive events such as ‘improvements’, and responsibility seemed to be suggested to fall on Southern Health as an organisation.
2. When the responsible participant was removed, the responsibility could almost always be inferred from the surrounding context, and the participant suggested to be responsible was generally Southern Health as a whole in positive statements, but staff at the unit in negative ones. This seemed to create a divide between the ‘good’ organisation and the ‘bad’ staff.
3. Southern Health was most frequently shown to be doing things to something else, such as improvements, whereas staff were always positioned behind something else which backgrounded their involvement in actions.
4. Inanimate nouns such as ‘investigation’ were also often shown to be responsible for actions rather than explicitly naming who was driving these processes, further hiding personal responsibility.
5. Inanimate nouns often ‘helped’ Southern Health in positive events, but ‘revealed’ information to Southern Health in negative events. This frames Southern Health as being dependent on these inanimate nouns, and reduces their responsibility for actions.
6. Staff were often shown to be responsible for ‘failings’, whereas Southern Health was shown to be responsible for a greater variety of actions, again creating a divide between ‘good’ Southern Health and ‘bad’ staff.

The non-apology findings were:

1. 10/14 possible non-apology strategies were present in the texts, often with more than one example of each found.
2. The most common strategy was to use words like ‘incident’ to avoid explicitly stating what the apology was for.
3. The second most common strategy was to express a will to apologise or refer to a past apology.

I only looked at four texts so it’s not really possible to make sweeping statements about Southern Health based on these findings, but in these texts there is evidence suggesting some deliberate manipulation of Southern Health and its staff in assigning blame and taking credit for actions, as well as intentional avoidance of producing an actual apology and risking admitting responsibility for negative actions.

The division between ‘good’ Southern Health and ‘bad’ staff is interesting as it shows a lack of ‘duty of care to staff’, something that they emphasise throughout the communications. The findings also contradict the NHS Being Open policy that is designed to avoid shady communications, which suggests that this kind of communication isn’t widespread across the NHS and that Southern Health needs a reminder.

So, what now? As satisfying as it is to know that I managed to use my degree to give a giant middle finger to Katrina Percy et al, realistically I’m just an undergraduate with a long essay to wave at Southern Health. What would be ace is if someone who could use these findings for positive change (i.e. someone from Southern Health who reads this), actually had the balls to admit that their communications could do with a bit more openness.

Week 5: Censored #107days

We couldn’t let quilt week pass without squeezing in a post about the patch that didn’t make it. Ally Rogers, LB’s cousin, has been a quiet constant of the #JusticeforLB campaign, sending witty tweets and making acerbic observations, that have led to many a dark chuckle in the Justice Shed. Ally is currently completing her undergraduate dissertation, which is due in next week. With a working title of How to Make Friends and Impress People: A Case Study (to be replaced with something more yawningly academic in due course) Ally is conducting a narrative analysis of Sloven’s communications around LB’s ‘care’ and death. 12,000 words looking at the texts on blogs and Sloven’s public statement on their website, focusing on assigned and hidden responsibility for actions. Legend.

When it came to stitching a patch for the Justice Quilt, Ally went for subversive LB style. Committing to fabric LB’s bigoted tendencies, as captured in Sara’s blog post of 2011.

The arrival of this patch into the quilt makers pile posed somewhat of a dilemma for Janet and gang. Was such a blatant statement appropriate for the Justice Quilt? Would it make sense without context? Janet, Janis, Margaret and Jean discussed what to do amongst themselves and took advice from others.

After much careful and sensitive deliberation by the quilting team it was decided not to include the patch in the quilt. A decision not taken lightly.

Instead it proudly sits on the wall of Sara and Rich’s kitchen, as a brilliant conversation starter and chuckle inducer.

Here’s to LB, Ally and all the subversive ones.

Week 5: Quilt Graffiti #107days

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

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

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

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

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

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

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

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

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

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

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

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

I should know what he sounds like.

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

I should have my own stories to tell other people.

This should never have happened.

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

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

What a difference a year makes? #JusticeforLB

It’s now 74 days since the spectacular finale of the #107days campaign, 439 days since LB died, preventably in STATT.

Progress towards #JusticeforLB continues at a pace, in the last week alone we’ve unveiled the beautiful LB Justice Quilt, and yesterday we launched the LB Bill website. All this in addition to the other actions documented in our earlier post about maintaining momentum. Quite a lot of action for an entirely volunteer campaign figured headed by a family in the worst situation imaginable. So yesterday Sara and I were talking about how much has been achieved since the end of the #107days, in those 74 days.

Contrast that progress with the progress made in STATT in the 74 days that immediately followed LB’s death. Over to Sara:

Apologies for the somewhat ironic title for this post. A year ago this week, the CQC went into the Slade House site (which included the STATT unit) and did an inspection that (at last) made visible the level of disfunction/malaise/failure that characterised provision there.

A marker of how bad it was, LB’s death hadn’t sparked any apparent consideration around whether or not there might be issues around the quality of care provided. Nothing, in 74 days after the worse outcome of ‘care’ imaginable, no action, no change, no improvement.

The CQC inspection team pitched up for a routine inspection and did their job.

The full horror of what the team found can be read here. It’s a deeply sad, harrowing, unbelievable and enraging read. And was followed by similar failures at other provision in Oxfordshire.

Here in the justice shed we try to remain positive and optimistic so, in the spirit of 107 days of action, we raise a cuppa to the CQC and effective inspection of health and social care provision.

It is impossible to know, but our suspicion is that without CQC conducting routine inspections, issuing enforcement action and continuing to monitor the ‘progress’ at Southern Health, it is a very real possibility that STATT could still be open. The inevitable outcome of that is too much to imagine.

We have a long old road to get #JusticeforLB, but there are inklings that in small ways we may already be improving things for other dudes. So, as ever, thanks for all your support. Huge thanks also to CQC, for doing their job, but doing it with care, compassion and attention to detail, something the evidence suggest were rare commodities around STATT.

Progress towards #JusticeforLB in #107days

When we set out on #107days we weren’t really sure what shape the campaign would take. We thought we’d aim for an action, thought or reflection each day, but we never in our wildest dreams expected the degree of engagement, passion and conviction that emerged in the name of getting #JusticeforLB and all dudes. On Friday, the final day of the #107days campaign, and the first anniversary of Connor’s death, the most remarkable thing happened. The support and engagement and love was visible for all to see, as person after person changed their profile picture on twitter or facebook. This is what Sara had to say about it:

Friday was a day I dreaded with every bit of my being. When I woke, very early, I was surprised to see that overnight, people had begun to change their photos on twitter. Some couldn’t wait till the day. Rich and I went to the cemetery. We bickered on the way there about nonsense really, both stressed/distressed beyond words. The woodland section was beautiful and the cemetery was alive with rabbits, birds and insects. We lit a candle and placed it carefully among the long grass. Next to the buses and model policeman.

We had our usual ‘how.can.he.be.dead?’ looping discussion. Thinking about how, that time a year ago, he was still alive, looking forward to the Oxford Bus Company trip. How his death could have so easily, so fucking easily, have been prevented.

An hour or so after we got home, people started calling in and we spent the rest of the day, till the early hours of Saturday, hanging out, chatting, drinking and eating with family and friends. A couple of times during the day I had a quick peek at twitter/facebook and was astonished at the sea of black and white pics of LB. It was absolutely brilliant and so incredibly moving.

The next morning, I lay in bed reading through all the tweets. Hundreds of people. Stepping up in solidarity with the quirky guy who should still be here. Wow. I thought. Scrolling down and down. Wow. Wow. Wow. When I got to Divine Comedy, I couldn’t help laughing. Absolute genius. And the most brilliant timing.

#107days has been outstanding. And hopefully transformative.

Friday was the busiest day on the blog since it started, gathering 7,226 of our total 63,497 views. This post isn’t going to recap on all of the contributions to #107days, we will do that at some point but not yet. Instead we thought it would be good to share the image below… see how far #JusticeforLB has travelled, in the first 100 or so days. We’ve had 63k blog hits since this blog was established 113 days ago, an average of 550 hits a day, and we’ve reached more than half the world.

We also thought we should update people on the progress made so far to getting #JusticeforLB. At the start of the campaign we were explicit about what justice looked like, so going above and beyond in an attempt to engage the NHS, we’re using a performance dashboard to update on progress!! You never know we may write our very own robust action plan next. Anyhow, I digress. What follows is what #JusticeforLB looks like, progress so far, and an assessment of performance:

For LB

Staff, as appropriate, to be referred to their relevant regulatory bodies:
>> Waiting to hear what is happening from Southern Health: RED

A corporate manslaughter prosecution brought against the trust:
>> The Police investigation is ongoing: YELLOW

Meaningful involvement at the inquest, and any future investigations into LB’s death, so we can see the Trust and staff account for their actions in public:
>> No progress on the Inquest yet, pending the Police investigation. NHS England have been very open, and have fully involved the family at every stage in commissioning the pending Serious Case Review. The family will also choose one of two lay representatives on the SCR Board: GREEN 

For Southern Health and the local authority

Explanation from the CCG/LA about how they could commission such poor services:
>> Response One + Response Two = No progress: RED

Reassurance about how they will ensure this cannot happen again:
>> Meeting on 16 May with reassurances given that contracts are being looked at, but no confidence gained that it wouldn’t happen again: RED

An independent investigation into the other ‘natural cause’ deaths in Southern Health learning disability and mental health provision over the past 10 years:
>> An investigation has been commissioned by NHS England to look at all unexpected deaths since Southern Health came into being in April 2011: GREEN

>> Terms of reference yet to be agreed or communicated and there are concerns that the Southern Health Board Minutes present an alternative picture to that which the family were led to believe by NHS England: RED

For all the young dudes

A change in the law so that every unexpected death in a ‘secure’ (loose definition) or locked unit automatically is investigated independently:
>> No Progress: RED

Inspection/regulation: It shouldn’t take catastrophic events to bring appalling professional behaviour to light. There is something about the ‘hiddenness’ of terrible practices that happen in full view of health and social care professionals. Both Winterbourne and STATT had external professionals in and out. LB died and a team were instantly sent in to investigate and yet nothing amiss was noticed. Improved CQC inspections could help to change this, but a critical lens is needed to examine what ‘(un)acceptable’ practice looks like for dudes like LB:
>> There appears to remain a gap in understanding ‘what good looks like’, or in implementing what is already known. It greatly concerns us however that the body appointed to address this very matter, Winterbourne JIP, appears to fail to make any real progress. We were surprised that they chose to not engage with the #107days campaign, especially given the pertinence to their remit and the widespread support from key stakeholders: RED

Prevention of the misuse/appropriation of the mental capacity act as a tool to distance families and isolate young dudes:
>> Lucy Series blogged about this issue on Day 32 and also blogged on her own website when the Government responded to the recommendations of the House of Lords Select Committee on the Mental Capacity Act 2005.

>> It also came up on the webchat with Steve Broach on Day 103. Steve said this:

The most recent Supreme Court decision to directly impact on disabled young people is the Cheshire West case, which radically increases the number of disabled people whose placements involve a deprivation of liberty requiring justification to avoid a breach of their human rights – see the judgement here.

So in summary we’re confident of progress: GREEN

An effective demonstration by the NHS to making provision for learning disabled people a complete and integral part of the health and care services provided rather than add on, ad hoc and (easily ignored) specialist provision:
>> No progress. RED

Proper informed debate about the status of learning disabled adults as full citizens in the UK, involving and led by learning disabled people and their families, and what this means in terms of service provision in the widest sense and the visibility of this group as part of ‘mainstream’ society:
>> This is where you guys come in. We were blown away by the engagement with the #107days campaign which showed a version of collaboration and co-production that the social care textbooks could only dream of. LB and dudes were central, always central, there was no hierarchy, fancy job titles, pay packets, pecking order, communications strategy, spin or fact-finding visits. You stepped up, you debated and contributed, you made suggestion and led by example, and through it all ego never entered the arena. Most of all you gave us, and each other, hope. Hope for a better, brighter, alternative future. This is what Mark Neary had to say:

It has been a very moving 107 days but yesterday was quite phenomenal, with so many people recognizing the importance of the campaign. I do feel hope. In the last couple of weeks we’ve had several of the great and the good wringing their hands and declaring that they are at a loss about what to do about ATUs and the future of the people trapped in them. The Winterbourne JIP has failed to bring about any meaningful change. Norman Lamb says the right words but admits he has hit a brick wall. This week I was invited onto BBC Radio London to discuss adult social care and one of the leaders from ADASS was on, also confessing his fears of the future. Its looking like these people can’t do it. I’m not sure the will is there. Perhaps the system can’t be changed from within the system. Perhaps it will be movements like #JusticeforLB that change the social care world. The will, the passion, the energy, the humanity is there. I think we have to stop waiting for the leaders and the social care world to show its humanity. It ain’t going to happen. Apart from some isolated (albeit powerful) examples, I don’t see any drive from within social care to truly serve the people they are meant to be serving. Service is dead. The drive, the humanity is coming from the families, ordinary people and the legal world. Coming together makes us very powerful – we’ve already seen lots of examples of the system feeling very threatened by that power. Good. This isn’t the time for observing niceties. This is the time for action. I’m sick to death hearing about culture changes being needed. Sod organizational cultures – let’s start applying the law. The human rights act. The mental capacity act. If your culture means you can’t apply the law, in fact you break you law, then you’re not fit to do your job. Let someone else take charge.

So we’re giving this performance marker a big fat GREEN.

This gives us the following summary of confidence in performance:

 7 indicators RED: 2 Southern Health, 1 NHS England, 2 CCG/LA, 1 Winterbourne JIP, 1 unclear

1 indicator YELLOW: Police

4 indicators GREEN: 2 NHS England, 1 unclear, 1 JusticeforLB’ers

Each and every one of you who have contributed to the #107days campaign has inspired us, and renewed our hope, that there is a better way and it’s in our grasp. We aren’t waiting for anyone’s permission to shape it either. For those who have been asking #107days is over for 2014, but #JusticeforLB has only just begun. We will continue to update this blog, twitter and facebook, from time to time, and while the days of action have completed, you are welcome to continue to use the blogs to debate and discuss things. In the words of Mark Neary:

Pulling this post together, I guess I’m hopeful for the future for Steven, and for social care because the #justiceforlb campaign showed that you can have your guts ripped out but through love, humanity, downright common sense and a fantastic dogeddness, find the strength and compassion to fight on.

and Elizabeth:

#JusticeforLB and the #107days campaign has been amazing and inspiritional. To see so many people come together behind a cause shows something of what might be achieved in terms of a real and lasting legacy. It has made me feel hopeful that it is possible to change the way people with disabilities and learning difficulties are treated. As a mum to a young dude I am constantly thinking of how to keep him safe and cared for in the future.  I cannot imagine how difficult the last year must have been for Connor’s family, without him. The sight of so many LB profile pictures on Twitter today was a very fitting way to round off the #107days. A reminder of the person at the centre of it all. A handsome, quirky, funny, unique and special 18 yr old young man. He should not have died. x

and finally Anne-Marie:

“There is a saying in Tibetan, ‘Tragedy should be utilized as a source of strength.’
No matter what sort of difficulties, how painful experience is, if we lose our hope, that’s our real disaster.”
― Dalai Lama XIV

#107days is hope.

Thank you all for the support. Let’s keep the hope alive.

Day 107: Honouring LB #107days

Today we come to the end of #107days of action, exactly a year to the day that LB died, whilst in the ‘care’ of Southern Health, an entirely preventable death.

As accidental campaigners we never really could bring ourselves to plan for today, we’ve discussed it often, but nothing felt appropriate. Yesterday we finally settled on today’s action, in keeping with the rest of this entirely crowdsourced campaign, it’s over to you, our amazing, passionate, creative, committed, dedicated network.

We have two options for you today, you’re welcome to do one of them, or both of them (or none of course, it’s really your choice).

Firstly, please leave a comment on this blog post with your ‘take away’ message from #107days; what one memory, or thought, or learning will stick with you. How has LB, and this campaign in his memory, had an impact on you? We’re hoping for lots of comments and you’ll be able to read them as they grow throughout the day. If you’re a blogger and would like to write a post on your own blog please do add a summary, and a link into the comments here. Please remember that comments are moderated, so if your comment doesn’t appear immediately there’s no need to repost it!

Secondly, please change your social media profile pictures to LB for the day. You’re welcome to change it on twitter, or facebook, or tumblr, or instagram, or any combination of the aforementioned sites (and of course any others). We think this collective action will have quite a visual impact, to maximise that please download our profile pic below (right click on the image will allow you to save it to your computer and you can then upload it to twitter) so everyone is using the same black and white pic.

For maximum impact we ask you to only use the picture for the day, we very much hope you’ll join us.

More information on what next for the #JusticeforLB campaign will follow in a couple of weeks. You can follow this blog, or follow us on twitter, or facebook. We will seek your input before we make any decisions, but before we ‘move on’, we’d like to honour LB today.

Thank you all, for your support throughout #107days and today especially.

Day 60: 107 red balloons #107days

Day 60 was adopted by Beck from Frog Orange. At 3pm this afternoon everyone is welcome to join them at Shotover (at the top by the car park) to release 107 red balloons in memory of LB. Here’s what Beck had to say about why she wanted to support #JusticeforLB and the #107days campaign:

I wanted to adopt a day as part of the #JusticeforLB campaign for a number of reasons. I started reading Sara’s blog a few months before Connor was admitted to the treatment and assessment unit. I enjoyed Sara’s writing, her photography, her sense of humour.

I enjoyed reading about her musings about her family life and the little community we share. It was the only blog I ever requested to have emailed to my inbox. Naturally after Connor was admitted some of Sara’s entries made for really tough reading. I’ll never forget reading the few words she wrote on July 4th 2013. The horror, sickness and sadness I felt was so powerful.

I can not imagine the pain that Connor’s family and buddies are going through.

I was appalled by the non care that Connor received.

I was astonished how Sara and her family were treated during his stay.

I was horrified that Connor was allowed and left to drown in these circumstances.

And I have been disgusted by the way NHS Southern Health have behaved since.

I know Sara and Rich a little, we’ve hung out socially a few times and they have been customers (at Frog Orange) for years. Rich used to come in with Connor, his brothers and sister. He used to carefully herd them around the shop helping them spend their Christmas money.

One of the main reasons for taking part in this campaign is because if you know Sara and Rich at all, you know what utterly fabulous parents they are. They are just so bloody good at the whole parenting thing. It is just TOO cruel that they cared so well for Connor along with his brothers and sister, and within 107 days in the unit, he was gone.

So why balloons? Well, I don’t write a blog that anyone reads and so many wonderful people have written such powerful pieces in defence of Connor and his family. I thought maybe something visual would be good. A little time out in the fresh air thinking about the sunshine that LB brought to his family and friends. And if somebody finds a tag with #107days #JusticeforLB they might google it and spread the word. Let’s hope so.

Just to be completely transparent (it’s a style we’re deeply committed to), we had a comment on our post and facebook page from Vicky who was worried about the environmental impact of releasing balloons. It is something we have considered, and decided the risks are worth taking, you can read the discussion here.

Please do come along if you’re in the Oxford area and would like to join us and please do share any photos on twitter with the #JusticeforLB and #107days hashtags. Thank you.

Postscript

The super talented Izzi Crowther decided to produce an adaptation of Nena’s 99 red balloons for LB. So much love and so much awesome, here’s to the dude:

You and I, and the Frog Orange shop
Buy a bag of balloons with the love we’ve got
Set them free at 3 o’clock
‘Til one by one, they were gone…

One-oh-seven red balloons
Floating in the summer sky
Connor Co’s aerobus fleet
Go tell everyone you meet

One-oh-seven Shotover Park
One-oh-seven dogs will bark
Lorry lorry super-scurry
Call the troops out in a hurry

One-oh-seven knights of the air
Riding super high-tech jet fighters
LB is a super hero
LB is like Captain Kirk

With orders to identify, to clarify and classify
Scrambling in the summer sky
As 107 balloons go by
107 red balloons go by

107 dreams we’ve had
Every one a red balloon
It’s all over and we’re standin’ pretty
Overlooking Connor’s city

If I could find a souvenir
Just to prove LB was here
And here is a red balloon
I think of you and let it go

Day 47: Indignation and initiative vs ‘institutional inertia’ #107days

We are now on Day 47 of #107days, rapidly approaching our half way point, and we are delighted to share with you a post written by Saba Salman, who adopted today. Saba wrote the initial piece on LB’s death and #JusticeforLB, published in the Guardian on Day 0. It has been phenomenally heartening to see an independent person’s take on our campaign, but we’ll leave you to judge that for yourselves:

Imagine if you had £3,500 a week to run a campaign, consider the awareness you could raise with even a tenth of that.

Now multiply £3,500 – the average weekly cost of a place at an assessment and treatment unit (ATU) – by 3,250 – the number of learning disabled people in such units. That’s an indicator of the costs involved in using controversial Winterbourne View-style settings.

Just over a year ago, 18-year-old Connor Sparrowhawk, aka Laughing Boy or LB, was admitted to a Southern Health NHS Trust ATU where he died an avoidable death 107 days later.

In contrast to the vast amounts spent by commissioners on places like the one where LB died, the #JusticeforLB campaign sparked by his death is ‘funded’ solely by goodwill. No PR team crafting on-message missives, no policy wonks collating information, no consultants advising on publicity.

#107days of action began on Wednesday 19 March, a year to the day Connor went into Slade House, and continues until the first anniversary of his death, Friday 4 July 2014. Half the aim – and I’ll come to the other half at the end of this post – is to “inspire, collate and share positive actions being taken to support #JusticeforLB and all young dudes”. The goal is to capture the “energy, support and outrage” ignited by LB’s death.

This post, around halfway through #107days and written from the perspective of having reported on #JusticeforLB at the start of the campaign, looks at what’s been achieved so far.

I’m not describing the “abject failure” of progress to rid social care of Winterbourne-style settings – care minister Norman Lamb’s words – the sort of apologies for care where compassion is often as absent as any actual assessment or treatment. Nor do I write about the errors at Southern (you can read here about the enforcement action from health regulators after a string of failures). I want to explain, from my interested observer’s standpoint, the impact of #107days and what might set it apart from other awareness drives.

It’s a timely moment to do this. It is now three years since Winterbourne, less than a week after Panorama yet again highlighted abuse and neglect in care homes and a few days since new information on the use of restraint and medication for people in units like LB’s. The campaign reflects not only the importance of #JusticeforLB, but also an unmet need to finally change attitudes towards vulnerable people (and it’s not as if we don’t know what “good care” looks like).

There is a palpable sense that the #107days campaign is different. Talking to journalists, families, activists, academics, bloggers and social care providers, the word “campaign” doesn’t adequately define #107days. It’s an, organic, evolving movement for change, a collaborative wave of effort involving a remarkably diverse range of folk including families, carers, people with learning disabilities, advocates, academics and learning disability nurses.

It’s worth noting the campaign’s global reach. LB’s bus postcard has been pictured all over the UK and as far away as Canada, America, Ireland, France, Majorca and São Paulo. LB has touched a bus driver in Vancouver and brownies in New Zealand.

Because of the blog run by Connor’s mother Sara Ryan (launched long before his death), LB and his family are not mere statistics in a report or anonymised case study “victims” in yet another care scandal. Instead we have Connor: a son, brother, nephew, friend, schoolmate, neighbour – and much more – deprived of his potential. We forget neither his face and personality nor the honest grief of a family facing “a black hole of unspeakable and immeasurable and incomprehensible pain”.

Yet while anger and angst has sparked and continues to fan #107days, the overwhelming atmosphere is optimistic. There is the sense that outrage, can should and will force action (and it’s worth mentioning, as #JusticeforLB supporters have stressed, exposing bad care begs a focus on good care – lest we forget and tar all professional carers with the same apathetic brush).

Both in its irreverent attitude and wide-ranging activity, this is no orthodox campaign. It is human and accessible because of its eclectic and inclusive nature (see, for example, Change People’s easy read version of the report into Connor’s death). And at the heart of the campaign lie concrete demands. In its bottom-up, social media-driven, grassroots approach and dogged determination, #107days has a hint of the Spartacus campaign against welfare cuts (Spartacus activist Bendy Girl is supporting #JusticeforLB through her work with the newly formed People First England).

As for impact so far, daily blogposts have attracted over 25,000 hits with visitors from 63 countries. There have been 7,000 or so tweets (which pre-date #107days) 1,380 followers, the #justiceforLB hashtag has been used more than 3,560 times and the #107days hashtag more than 2,000 times in the last month (thanks to George Julian for the number crunching). So far, the total amount raised for Connor’s family’s legal bills is around £10,000.

I can’t list each #107day but suffice it to say that the exhaustive activities and analysis so far include creative and sporting achievements highlighting the campaign as well as education-based events (or as Sara described progress on only Day 6 of #107: “Tiny, big, colourful, grey, staid, chunky, smooth, uncomfortable, funny, powerful, mundane, everyday, extraordinary, awkward, shocking, fun, definitely not fun, political, politically incorrect, simple, random, harrowing, personal, in your face, committed, joyful, loud, almost forgettable, colourful and whatever events”).

Along with blogs, beach art and buses in Connor’s name, there’s an LB truck, the tale of two villages’ awareness-raising, a hair-raising homage, autobiographical posts about autism, siblings’ stories, sporting activities, and lectures. And patchwork, postcards, pencil cases, paddling (by a 15-year-old rower) and petition-style letters (open to signatures).

It’s worth noting that while learning disability should be but isn’t a mainstream media issue, there have been pieces in the Guardian and Daily Telegraph plus important coverage on Radio 4 , BBC Oxford and in the specialist press. BBC Radio Oxford‘s Phil Gayle and team have followed developments relentlessly and Sting Radio produced an uplifting show on the first day of the campaign. While some of this coverage pre-dates #107days, it reflects how media attention has been captured solely thanks to the efforts of Connor’s family and supporters (links to other coverage are on Sara’s blog).

As for reaching the key figures who could help make the changes #107days wants, the campaign has had contact with health secretary Jeremy Hunt, care minister Norman Lamb, chief inspector of adult social care Andrea Sutcliffe and Winterbourne improvement programme director Bill Mumford, care provider organisations and staff.

Earlier, I described the first half of #107days’ aims to “inspire, collate and share positive actions” and capture the “energy, support and outrage” ignited by LB’s death. Based on the efforts and impact so far, and the campaign is clearly on track.

But the remaining target – to “ensure that lasting changes and improvements are made” – is more elusive, largely because it lies outside the responsibility and remit of members of the #107days campaign.

Contrast the collective nerve, verve, indignation and initiative of the last 46 days to what Norman Lamb calls the historic “institutional inertia” of NHS and local government commissioners, a cultural apathy undermining plans to move more people out of Winterbourne-style units.

The existence and continued use of ATUs might be a challenging and seemingly intractable problem. But that’s not good enough a reason for commissioners – and those who run and govern such places – to ignore the problem. There are good intentions coming from some in authority; people just need to put their collective muscles where their mouths are. Doing that sometime during the remaining 60 days of the campaign for Connor seems like the right thing to do.

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.

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 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.

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.