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.
image

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.

Day 91: Lunching for LB and Three Lives #107days

Day 91 is another shared day. It was originally adopted by Lisa Trigg and Jo Moriarty, and has been shared with the Care Quality Commission who today launched their Three Lives report.

This is what Jo had to say about getting involved:

Mydaftlife was one of the first blogs I started following when I joined Twitter just over two years ago.  I know two dudes just a little bit older than Connor (LB) and I knew a bit from their parents how hard it is to find the right sort of support. Although I had never met @sarasiobhan I felt as if I knew everyone she wrote about in her blog. When Connor went into Slade House, I imagined that he and his family were about to get expert advice and support from a specialist NHS unit. Like everyone else, I was horrified 107 days later to read that he had died a preventable death. I wanted to get involved in the #107days campaign because we need to make sure that other families do not experience the devastation that Sara and her family have had to go through and to make sure that dudes like LB get the sort of support that makes them feel their lives are happy and fulfilled.

And this was why Lisa was lending her support:

I’d met Sara a couple of times at meetings for a project involving our research units (she’s at Oxford, I’m at the LSE). Last July I was chatting with a colleague about contacting Sara about a work question and she told me the terrible news about LB and told me to have a look at Sara’s blog. I don’t have kids, but still I can’t imagine anything worse than losing one of your children, and for it to be in such a tragic and pointless way is inconceivable. As more and more information became available via Sara’s blog and through Twitter, the situation just became more and more heart-breaking and difficult to believe. It became difficult NOT to want to do something.

Lisa and Jo decided to get involved and support #107days with Lunching for LB:

We work around the corner from each other but met at a Social Care Curry event. Our first real contact was via Twitter about doing something together for #JusticeforLB and #107days. We really wanted to do something crazy and/or dramatic (we particularly liked the bus drawing in the sand!), but plumped for the opportunity to bring people from our research units (from LSE and King’s) for some lunch and informal discussion.  Not very crazy, but definitely worthwhile.

Viv Cooper joined us from the Challenging Behaviour Foundation to give us a very compelling and beautifully delivered presentation about why and how families need to be included in the care of young (and older) dudes, and by extension, in our research projects. Viv also told us a bit about Lisa, one of the three stories, alongside LB, in CQC’s 3 Lives report (see below).

Much discussion ensued, with debate about carers and compassion, the place of regulatory inspections and whether they can improve care, and how commissioners should know and understand the quality of services they are commissioning.

We’d like to thank Viv and our colleagues for joining us and we hope that our event helped even just a little to raise awareness of what happened to Connor and the fight for better care for all the other dudes out there and their families.

Day91Lunch

We were delighted when the Care Quality Commission got in touch to adopt one of the #107days. We believe that they are an incredibly important part of the jigsaw that will bring JusticeforLB and improve provision for all dudes. This is why they wanted to get involved:

CQC adopted today as it coincides with the launch of their new Three Lives report, published jointly with CBF. The report features LB’s story, alongside that of Kayleigh who spent ten years in assessment and treatment units (including Winterbourne View), and Lisa, who was kept for the majority of time in a locked area at an ATU with staff ‘interacting’ with her through a small letterbox style hatch. These stories were shared at an event chaired by CQC Board Member, Prof Louis Appleby and the report is one of the outputs from this event. The report concludes that ‘the quality of provision of care for people with learning disabilities and their families is too variable across England. Services should be community based and person centred, close to family and local contacts. Families should not be excluded from decisions about care’. It also outlines actions that CQC, and others, have committed to take in order to help people in the same situation and it comes with a promise that progress against these actions will be reviewed in Autumn 2014.

Prof Appleby states that’ The care of people with learning disabilities should be a touchstone for the values of the NHS as a whole and how the care system responds to the stories in the Three Lives report should be seen as a key sign of its progress on safety. Everyone involved in services for people with learning disabilities, commissioners, providers and regulators, need to make sure that they put the needs of individuals first and wherever possible provide care close to home.’

Sara is also quoted in the press release that accompanies the report with a call to action ‘Three lives, and three stories that are beyond shameful. It’s time to stop talking and act to change the paucity of aspiration and provision for learning disabled people’.

We hope that all of those who read the Three Lives report, or who enjoyed Lunch for LB today, will reflect on their own role in improving things, and once again we thank you all for your support in our campaign for #JusticeforLB.

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.