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 20: What’s a Board to do? #107days

Day 20 was adopted by Amanda Reynolds. Amanda has a lot of experience of NHS Boards, she offered her support to #JusticeforLB early on and kindly agreed to share a post for #107days on what an NHS Board Member is there to do:

I have been thinking about Boards and their key remit a lot recently. Last year I was on an NHS Foundation Trust Board and it was a water shed year for governance and leadership. It was the year when both the Francis Report and the DH response were published. We stopped, shuddered, shook and should have changed a lot. But, did we in the end do that?

I was also very aware, like many, of the failures of Winterbourne View and wondered how any Health and Social Care Board could get itself into such a distant and unknowing place in regard to what’s happening in its own services. And now via twitter another Trust is in trouble with the avoidable death of Connor Sparrowhawk. His family and learning disability experts are making a loud noise and are rightly outraged.

So, a few reflections on what is a Board for? I have a feeling CQC, Monitor and DH are asking such questions about Southern Health right now. What is common in each case is the first to make a big noise are not the Board or the staff but the families. Is there a pattern emerging here about who are the best people to spot, and be listened to when we need to assure ourselves of the quality of the care we provide?

But, do we have to wait for a Julie Bailey or a Dr Sara Ryan in every Trust, shouldn’t each Board be proactively in charge of quality? Absolutely, as without an effectively governing Board no service can assure us it is safe and of the highest quality. But worse none of us as users of the NHS can be confident in the care it provides us and our families.

Essentially the Boards job is to govern or as Plato would have said “to steer”, BUT the Board is a collective being, a collection of Individuals who come together to govern. So each individual with a vote is first and foremost part of a unified board and an accountable individual also. These two things are not mutually exclusive. They do need to be understood as each Board member has two key responsibilities  overall responsibility for quality and a personal responsibility to act effectively and to assure themselves the organisation is well run.

If you can’t sleep at night or you are a Board member there’s lots to read that can help you understand an NHS Board and its governance responsibility better here: published in November 2012, Standards for members of NHS Boards and Clinical Commissioning Groups Governing Bodies in England and from Monitor in April 2013, Quality Governance: How does a Board know that its organisation is working effectively to improve patient care, and August 2013, Your statutory duties: A reference guide for NHS Foundation trust governors.

So, back to a Board working day to day maybe you have heard something like  “the Board decided that but I did not know the full picture when we decided it”. This is never an acceptable position for a Board member (Executive or Non-Executive) to express. Each member must ensure they know all they need to know to govern their organisation effectively. This is not a small task but a core requirement if an NHS Board is to be well led. Really important when things go wrong in delivery of quality of care as in the case of Connors avoidable death.

Prior to the recent Southern Health Board meeting it was discussed on twitter whether the Chair and members knew all the information in relation to Connors’ death. So, in the context of excellent governance and the Boards key remit this is something the chair will need to be seek to address urgently. The chair must assure themselves that non executives have the full information on this avoidable death and any action the trust has taken since. Monitor excellently outlines their understanding of a Boards remit by challenging each NHS Board to really govern by knowing not just hearing and nodding through decisions.

Quoting from Monitors report on quality governance for Boards published in April 2013: “The Board should understand the organisation and what they are being told is true, accurate, fair and backed up by sufficient evidence.”

I have to say when I read the public board papers of Southern Health March 2014 meeting I was a little disappointed that their self-assessment was not more rigorous and there did not appear enough soul searching or challenge reported within the Board for me.  An avoidable death of a young man had occurred here.

There has been a lot of focus in the media on criticising the CEO and they do hold day to day responsibility for the running of the Trust. But, it is important to realise they work to an NHS Board like all others a unified board. So, individually and collectively each member with a vote is accountable here, not just the CEO and chair.

So, if I had a chance to question Southern Board I have pondered some of the questions I might start with:

Qu 1: does each Board member understand their individual and corporate responsibility here for this failure of care?

Qu 2: where are the NEDS in the current dialogue and responses by the Trust are they sighted and signed up to all actions?

Qu 3: can each of the Board members satisfy monitor and CQC that they know what went on, what went wrong and that services are now safe today? What evidence do they have to support this view?

Qu 4: does the Trust Board understand its responsibilities to patients and families enshrined in law as part of the NHS Constitution? Has it acted on them in relation to Connors death and engaging his family?

Qu 5: After Connors avoidable death how can the public be confident that the Trust are providing safe and effective health care to all inpatients with Learning Disability now?.

It is a huge challenge to govern a health care organisation effectively and I do not place my reflections or this challenge out there lightly. Each Board needs to work from a position of development and constant review. Challenging yourself, your Board colleagues and your organisation constantly. Gaining and interrogating knowledge so the Board collectively can be refreshed and reflect on the quality of what it does each and every day.

Specifically, a message for The Board of Southern Health. You should be listening to and engaging the family of Connor here.  First and foremost to address their concerns properly but to use this feedback to assure the Board collectively that your services are safe and each patient is getting good care. So, the Board can be confident in confirming to its community, commissioners and regulators that it is governing a quality organisation.

As Toni Collett said “ The better you know yourself, the better your relationship with the rest of the world”.

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