Wednesday, 12 March 2014

The Need for Care, Candour and Change

My last post talked about the poor access to healthcare for people in hospitals. No, really.  So I want to pose a simple question; what hospitals are for?

Now, I would have thought that hospitals are something to do with health. I'd expect hospitals to play a role in treating someone's health issues to make their life better. Or if you don't know what's wrong, hospitals might assess the problem. And during that process, when people are unwell,or injured, scared, and desperately hoping for things to improve, I'd expect hospitals to be a place of care. Not just because it's socially acceptable, or right, but because a lack of care creates stress - and that's not good for recovery.

So three purposes of a hospital; assessment, treatment and care.

Let's see what happens in a place called an "assessment and treatment unit". They've gone for a Ronseal approach to the name. And you'd expect care because, well we’ve all heard of the duty of care, haven’t we?
 “The right to a duty of care – health professionals must use reasonable care and skill and patients are entitled to receive care of a standard which a responsible body of medical opinion‟ considers to be appropriate to their condition.”
So assessment, treatment and care – they’ve nailed it. Surely assessment and treatment centres should be the zenith of the care experience. Only, they're not.

STATT, is an assessment and treatment unit run by Southern Health in Oxfordshire. That’s where 18 year old Connor Sparrowhawk went for care, and died.

I first heard about Connor through a blog that his mother Sara writes. There he was known as LB (short for laughing boy) or The Dude. The blog was outstanding, not only because of the beautiful writing, but because it celebrated the oddities and joys that life with Connor entailed. The blog was often one source of joy and hope in a world where both are too often lacking. The blog is still outstanding, but since Connor's death, that's for far sadder reasons.

The trust initially claimed that Connor had died of natural causes. He hadn't.

Connor had a condition called Klinefelter's syndrome, which includes learning disability and epilepsy. He died after having a seizure in the bath. He drowned. In the unit where he meant to be cared for. There was no effective plan in place to deal with his epilepsy. The awareness of his epilepsy seems sketchy. His parents flagged up indicators that he was having seizures. They were ignored.
An independent investigation began, but the trust didn’t seem to have its act together. Connor's family understandably feared a cover up. They engaged a legal team to prevent this and as a result they have run up legal costs. Despite the work of the legal team and the investigators, the trust still didn't cover itself in glory. For example, it found a bunch of documents only two days before the final report was published. Too late for any comment from Connor's family. The report was published, 84 days after the trust's own 60 day time limit for the enquiry had elapsed. Here’s a brief summary of the timeline relating to the investigation from Sara’s blog.

The trust did not appear to embrace the duty of candour - one of the key recommendations of the Francis report. It appears to have been more concerned with denying responsibility than responding humanely to Connor's parents or dealing with the problems that were so clearly apparent in their services. They've obstructed the investigation into Connor's death, marginalised his family, and tried to gag the person who was supposed to be providing support to Connor's family  in the investigation (to the point of saying that they couldn't pass on details to Connor's family and couldn't even say that they were operating under a gagging clause).

Despite this the report did finally come out, and Sara’s solicitors described the outcomes of the report as follows:
“The report, completed by the independent organisation Verita, investigated Connor’s death and found the following:
1. That Connor’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 Connor’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 Connor
5. That if a safe observation process had been put in place and Connor 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 Connor’s epilepsy and his epilepsy was not considered as part of Connor’s 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.”

Now stop for a second. Go back and read point 5. Sometimes things are horribly simple.
Now go back and read points 5 and 6 together. You might find yourself doing this for some time.

Just in case you think that Sara’s solicitors might be putting an overly dramatic spin on things, take a look at some of the extracts from the report itself. It can be found on Southern Health’s website .

F1 We found no evidence that an epilepsy profile was completed when CS was admitted to the unit. This was a key omission.

F2 We found no evidence that CS had a medical review on admission which should have included a review of his epilepsy.

F3 Epilepsy was not considered as part of CS’ risk assessment at or after his admission to the unit.

F4 The trust care pathway Epilepsy in people with a learning disability map (2012) had not been implemented in Oxford in 2013. This map is based on NICE guidelines which were in place at the time and should have been followed.

F5 There was no comprehensive care plan to manage CS’ epilepsy.

F6 The information in CS’ clinical notes was contradictory in relation to his epilepsy history and care.”
And here’s an excerpt from the report on what should have been expected and what actually happened

“6.8 Vicki Myson reviewed CS’ clinical notes for this investigation. She wrote in her report to us:

“There was no epilepsy profile completed for [CS] on his admission to the unit. Within the profile I would expect to have seen a history of [CS] epilepsy, a description of all seizure types experienced and a history of anti-epileptic medication. The care of [CS] was multi-disciplinary and, therefore, paramount for all staff involved being aware of seizure types so that they can be accurately observed and reported. When epilepsy was mentioned during written communications the seizure types are only named and not described.”

6.9 The records indicate that CS should have been seen by a junior doctor on admission (known as clerking in). This ensures a medical assessment on admission along with decisions about observations, medication and physical care. This would often be in conjunction with nursing admission processes. We have not seen any record of such an assessment.

6.16 We found no evidence in the clinical records to indicate that his epilepsy was explored. A number of physical and risk assessments were undertaken and updated during his stay at the unit but none that explored his epilepsy until 23 May 2013. Within CS’ notes there are no individual risk assessments about CS’ epilepsy or assessment of the risk of seizures.


Had the risk assessment been done it should have considered risks associated with activities like bathing and cooking.

6.17 S11 wrote in the health action plan on 14 April that CS had received an epilepsy risk assessment. We found no documentary evidence of this. “

So Connor died in an assessment and treatment unit that seems short on assessment, and treatment, and care. It's hard to see how the professionals there lived up to their duty of care. And the way that the investigation has been handled shows no real sign of living up to the Duty of Candour that was recommended in the Francis report.

So what now, what next? What can change?

Sara started a campaign called Justice for LB. It needs support. The truth about the system and people that allowed Connor’s death to happen must come out, and merely saying that lessons will be learned is not enough. Things must change. And simply put, someone who has lost their son should not be left holding the bill for ensuring that happens.

And it’s not just about LB, it’s for all the young Dudes. There were 5 people in the unit when Connor died. What was treatment like for the other 4? What is it like for others in assessment and treatment units in Oxfordshire, and up and down the country? What’s it like for so many people with learning disabilities, for so many people in residential care - given what we already know through the document Death by Indifference?

Good assessment, appropriate treatment, genuine care and candour when things are going wrong. We should not expect anything less from health services. No one should. Yet CQC’s report on mental healthcare show that physical health is too often ignored in psychiatric wards, how can we have hospitals that don’t provide treatment? Physical health problems do not disappear as soon as a diagnosis relating to mental health or learning disability comes along. Treating the whole person is the responsibility of whichever service, and whichever professional is meant to be providing care for you.

Similarly, the CQC report's examples of ward staff not doing anything to stop intense pain, get someone their dentures, glasses or even a change of clothes for over a week casts some doubt on the willingness of some hospitals to provide basic care. Doesn't that echo Mid-Staffs? Surely that must change? But what will change if even a case as clear cut as Connor’s does not provoke immediate and meaningful action?


1 comment:

  1. Martin - I am on a train back from an event with safeguarding and professional standards team for three London Boroughs - we are working together to keep people safe with three core values driving our activity and that of every health and social care professional in the area - Courage, Compassion and Accountability - I am persuaded that the leaders involved will make a lasting impact on both what is done and the way people do it. I am deeply grateful for your deep care and attentiveness. I had seen the campaign in Connors memory but had not engaged until now. We have much to do to create a world in which his tragic and avoidable death is not in vain. Andy