Day 89: Calling for candour #107days

Day 89 was adopted by Lisa Hinton, who works with Sara. This is why she wanted to be involved, and what she did:

I’m a colleague of Sara’s, and have followed her passionate blog about LB’s time in the unit, and the enormous struggles she and the family have had since he died. I wanted to do something for the 107 Days of Action. A former journalist, I decided to put my old journalists shoes back on. What could we do to raise awareness of what happened to Connor and the failings of the health and social care system in responding to his death?

After considerable thought Lisa decided to contact an expert in patient safety, who has been explicit in the need for candour in cases such as LB’s. This is what happened next:

This led me to Peter Walsh, Chief Executive of Action against Medical Accidents (AvMA) the UK charity for patient safety and justice.

Screenshot 2014-06-16 12.28.26

AvMA provide advice and support for the victims of medical accidents and campaign to improve patient safety in the UK. Peter agreed to meet me and we talked about why learning disabled people get such a raw deal in the health and social care system, why families have to fight so hard to get justice, and what changes need to be made to ensure that what happened to Connor never happens again.

What follows is two videos of the interview between Lisa and Peter.

[youtube http://youtu.be/OCcAujOkkQI]

The first video covers introductions to Peter, to AvMA and it’s work. The lamentably slow progress to improve services for people with learning disabilities is discussed, the lack of priority given to provision for people with learning disabilities and the need for greater priority to be given to the safety of patients with a learning disability. The role of tragic cases like LB’s is discussed, as is the progress in patient safety since the Confidential Enquiry into Maternal Deaths was established sixty years ago. Advice for parents of people with learning disabilities is touched on, as is advice for bereaved parents.

[youtube http://youtu.be/FR5rcCZRtXs]

The second video discusses LB’s situation in greater detail, including corporate manslaughter. It touches on the language, and reporting of never events, factors that contribute to system failure, and the yet to be introduced, new offence of Wilful Neglect. The Francis Report, the duty of candour, and what needs to change is also discussed.

Peter finishes with the following statement, one that we wholeheartedly support:

Families, families like Connor’s in particular, make an amazing difference. But it shouldn’t be so hard for them. They shouldn’t have to make so much noise. So the system has to be more responsive, the system shouldn’t need to be dragged kicking and screaming to the door of taking action to improve safety. And that’s the kind of approach we would like to see in the future.

We sincerely hope that Southern Health, and others in a similar situation, are paying attention to Peter’s advice. It really is time to move to a culture of candour.

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 0: Launching #107days

A year ago today Connor entered Slade House, the assessment and treatment unit where he died #107days later. Last month an independent report found that LB, short for Laughing Boy (Connor’s nickname) had died an entirely preventable death. Today the Guardian published an excellent piece by Saba Salman exploring what happened and the response since Why did Connor Sparrowhawk die in a specialist NHS unit?. Definitely worth a read, but do come back. The article was accompanied by My son died in an NHS residential unit. Every day I wake to the pain that featured extracts from Sara’s blog, which you can read here.

Screenshot 2014-03-19 11.34.14

The campaign seeks to inspire, collate and share positive actions being taken to support #JusticeforLB and all young dudes. We want to harness the energy, support and outrage that has emerged in response to LB’s death and ensure that lasting changes and improvements are made. You can read what those lasting changes might look like here: What does #JusticeforLB look like?

The #107days of action start today on Day 0: Wednesday 19 March, and will continue until Day 107, the first anniversary of LB’s death, Friday 4 July 2014. We will use this blog to share information, ideas and evidence of the changes made, big and small. Connor loved buses, London, Eddie Stobart and speaking his mind. These are themes that we’re delighted will feature throughout this #107days campaign.

We have a wide range of activities occurring over the next 107days including: fundraising events such as sales of friendship bracelets, cakes or art work, a number of letter writing opportunities, inclusion of #JusticeforLB at various conferences and meetings, a couple of twitter chats including three organised by WeLDNurses, beach art, the Jim Mansell Memorial Lecture, a couple of exhibitions, runners and triathletes raising awareness or funds, art days in the planning, various bus related activities, and the support of numerous bloggers.

We have 62 days that have been adopted so far and still have 45 that are up for grabs, but be quick, they’re going fast. If you’d like to adopt a day, let us know using the form here. We also have a number of people, with great stamina, who are doing actions across the #107days and we’ll feature these in a separate blog post shortly. We kick off in earnest tomorrow with Day 1: Postcards of Awesome. We really appreciate the phenomenal support that has been shown so far and look forward to everyone’s efforts to bring JusticeforLB and other young dudes.