Hidden in plain sight: Gold standard epilepsy care at Southern Health NHS Foundation Trust #JusticeforLB

This weekend I’ve spent some time revisiting the fascinating tomes that are the Southern Health Board Papers, Annual Reports and Quality Accounts. The errors, inaccuracies, contradictions and spin make your head woozy after a while so I had to take a step away to catch up on Casualty, I find it a more realistic interpretation of reality! Anyhow this afternoon I decided to focus on epilepsy.


In case you’re not familiar with learning disability or epilepsy (and I’m no expert on either) it’s worth remembering that 1 in 4 people with a learning disability are likely to have epilepsy. Yup, that high, one in four. So it’s reasonable to expect those working in, or providing services for people with a learning disability, to be aware of epilepsy. It’s not rocket science.

So with this in mind I decided to take a look at what I could find about epilepsy care for people with a learning disability under Southern Health and their award winning CEO, Katrina Percy. This blog post reports what I found.

1) Epilepsy has been a known area of concern in Oxfordshire since 2011, before Southern Health even took over

You don’t have to dig too far into the past to find the paperwork related to Ridgeway Partnership. Prior to being gobbled up/taken over/acquired by Southern Health, healthcare for people with a learning disability in Oxfordshire was provided by Ridgeway. A quick look at their Quality Accounts for 2011/12 reveals this:

Ridgeway Partnership Oxfordshire Learning Disability NHS Trust Quality Accounts 2011/12 [archived here]

Priority 1: Reduce the risks to the health and well-being of service users who have epilepsy

Reported progress: Accident and Incident Statistics for Social Care are reported on a monthly basis and comparisons can be drawn between 2010/11 and 2011/12. Statistics demonstrate that there has been an overall reduction in the number of reported Accidents and Incidents relating to seizures over this time. An audit of training delivered in 2011-12 has been completed and the training need for 2012-13 has been calculated and planned for. Due to changing priorities within the Learning Disability Teams (LDTs) in response to Commissioning targets and the BeeHive Project, there has been a limited capacity to undertake the Audit of Epilepsy Management Plans. This target will be carried over to the 2012-13.

Additional action for 2012/13: Completion of Audit of Epilepsy Management Plans

2) Deciding… to do nothing about epilepsy

Before Southern Health officially won/bought/acquired the running of Ridgeway they conducted lots of due diligence and lots of important consultants wrote lots of reports, many of which flagged concerns. You can read more about it in Verita 2 if you’re super interested. It is crystal clear that epilepsy was a known concern. Southern Health, under the exceptional leadership of Katrina Percy and her Board (none of whom knew anything about learning disability at the time), decided that despite there being a known need in relation to epilepsy, and despite having what they claim is a ‘gold standard’ toolkit, they wouldn’t worry about epilepsy once they’d got Ridgeway in the bag. So they develop a toolkit but it doesn’t have any impact on practice. Got to ask what the point is?

3) Gold standard toolkits

I can’t cover this point without mentioning the audible sighs in the Coroner’s Court when Dr Lesley Stevens (LS in the @LBInquest tweets), Medical Director for Southern Health actually tried to brag about the quality of their epilepsy toolkit… at an inquest into one of their patients dying from a seizure, in a bath, unwatched; the same patient who was subjected to prone restraint while having a seizure; the same patient whose mother and family members were actively ignored when they raised concerns that he was having seizures.

The Medical Director actually had the bare faced cheek, not to mention inhumanity and delusion, to claim their toolkit was gold standard. At an inquest.

4) Panic responses, scrutiny and epilepsy patch up

Once LB died it looks like there was some trickle down effect, at least to appear to be responding to epilepsy issues. Verita 2 states:

A lot of work has been done by the trust since Connor died in relation to epilepsy e.g. the epilepsy tool kits, epilepsy map, embedding practice etc. A huge drive to provide epilepsy training to all nursing staff and occupational therapists was carried out at the end of 2013…

A full programme of epilepsy training for all learning disability division staff was started during the last quarter of 2013.

Prior to this, training was not mandatory and it wasn’t administered by learning and development so there is no record of it on individual’s training records. We heard at LB’s inquest that cuts imposed since Southern Health took over and reduced time for handover of patients meant this occasional training just wasn’t taking place.

In a Learning Disability Quality Booklet produced in September 2014, Jackie Roberts, a Clinical Nurse Specialist focused on epilepsy describes her role as such:

‘I was appointed as Clinical Area of Practice Lead for Epilepsy (Oxfordshire) in July 2014. The main aim of my role is to embed the implementation of the Epilepsy Map (2012) within clinical practice and across Oxfordshire’

I’m a bit at a loss as to why someone would only be appointed in July 2014 to implement something developed over 18 months previously. Unless of course it is just about being able to show (belatedly) that you are addressing something, an entire year after someone dies from an epileptic seizure and it becomes clear his family isn’t going to accept your natural causes claims.

5) Quality improvement or reputation management?

This is the second of these ‘hidden in plain sight’ blog posts I’ve written about Southern Health, you can read the first one here. When considering epilepsy care at Southern Health, certainly for people with a learning disability, I’m left only really able to draw the conclusion that recent developments are in response to a need to manage risks to their reputation, rather than from a position of caring about this group of people.

That said, even within this it feels like Southern Health haven’t really grasped that writing a policy, designing a toolkit or forcing people to attend training, in and of themselves won’t change anything. The staff who gave evidence at LB’s inquest, who had all been subjected to this flurry of activity after his death and in the intervening period, still could not describe basic seizures. Even though they all knew that they were appearing before a jury, at an inquest into the death of a young man with epilepsy in their care.

So while I hope that the end result is an actual quality improvement, I’d not be too confident and for now I’ll leave you with an extract from the jury at Connor’s inquest:

Connor Sparrowhawk died by drowning following an epileptic seizure while in the bath, contributed to by neglect.

Connor’s death was contributed to by very serious failings, both in terms of systems in place to ensure adequate assessment, care and risk management of epilepsy in patients with learning disability at STATT. And in terms of errors and omissions in relation to Connor’s care while at the STATT.

Contributory factors include:

  • a lack of clinical leadership on the unit
  • a lack of adequate training and the provision of guidance for nursing staff in the assessment, care and risk management of epilepsy
  • a very serious failing was made in relation to Connor’s bathing arrangement

Other failings included:

  • the failure to complete an adequate history of Connor’s epilepsy
  • and complete an adequate epilepsy risk assessment soon after admission

Opportunities were missed to undertake completion of the above thereafter.

Evidence also exists of inadequate communication with Connor’s family and between staff regarding Connor’s epilepsy care, needs and risks.

The full jury verdict includes 14 mentions of epilepsy, all of which are failings.

Patient safety failings hidden in plain sight 

Reaction and activity does not equate to improvement.

Policies and toolkits are useless if they do not reach staff.

Award winning leadership is (not worth the trophy its written on) pointless if you’re only leading yourself.

It is hard to really take on board that patient safety can be gamed in this way. Yet another example of patient safety failings being hidden in plain sight.

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