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.

Comment

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?

#justiceforlb

An odd form of parity

I've had concerns about access to healthcare for a long time now. When I started working in mental health in the early 1990s, it became apparent that access to basic healthcare was far from simple for many people. Whether because of being away from their home healthcare providers, fear tht saying the wrong thing would raise concerns (and lead to being sectioned), or feeling stressed of not being able to express the problem in a short appointment, getting the right healthcare wasn't easy.

That's without taking into account the credibility gap; the uphill battle of being believed, that this was not "all in your mind"   when you have a mental health diagnosis. The idea that you are somehow "unreliable" combinded witht the  pernicious term "attention seeking" often made people's  journey to healthcare harder. As I started to work with more groups of people I found the same issues. Mencap's report "Death by indifference" gives a chilling catalogue of how poor access to healthcare has led to many deaths. Most advocates will have a story about someone they work with finding out that a DNAR notice had been put on their notes, without their knowledge or consent. In a recent presentation to the Human Rights Law association, Joanna Owen of EHRC spoe of reports demonstrating that older people get less spent on their care packages than younger people with equivalent needs. It can make it hard to have faith in the idea of parity in healthcare.

Recently, the Care Quality Commission's report Monitoring the Mental Health Act 2012/13  raised the issue of physical healthcare of peoplep in psychiatric wards. The picture that emerged was not good. 14% of people were on wards with no access to a GP. None. It described the case of one woman in sever pain, limping badly who was not povided with access to chiropody. Having been forced to miss one appointment due to hospital transport not turning up, the staff felt it acceptable for the woman to wait another 2 weeks for an appointment.

Another case was described where a woman had been left without access to her glasses, dentures or a change of clothes for a week. She had also requested a dressing for an injury to her foot that was not provided. If someone were to not change clothes, put in their dentures, wear their glassess and leave an open wound on their foot when on a community treatment order it might be used as evidence of poor self care and self neglect. In a hospital environment it was seen as an unfortunate side effect of staff beign busy.

The  final example given in the report is of a woman on a psychiatric ward who, after returning from an invetigative procedure at another hospital, was told she must go out as there were not enough stafff on the ward to look after her. This was depite a letter from the hospital saying that she would need someone to remain with her at home after the procedure.  When she returned to the ward, unsurprisingly unwell, she was put into seclusion.

How can it be that people are having problems getting basic nursing care in a hopsital? How can the level of expectation for support be greater in someone's own home than it is in a building staffed by care professionals?  Surely you should be able to see a doctor in  hospital?

Looking at the CQC report into deaths in inpatient units, many are noted as having natural causes. I suggest that risk of death by natural causes greatly increases if you do not have access to healthcare.

The Royal College of Psychiatrists report "Wholeperson Care: from rhetoric to reality" sets out an agenda to tackle disparities in the provision of physical and mental health care. It's a bizarre way of achieving this parity, degrading the level of physical healthcare in psychiatric hospitals to that of mental healthcare in general. In both cases, the other side of healthcare is seen as another service's problem. So much for whole person care. So much for the person.

Short post, big problem

CQC have just launched their report Monitoring The Mental Health Act 2012/13.
I'll be writing about this in more detail soon, but here are some headlines to consider:

• 10 % of care plans don't include the least restrictive option
• 27% of care plans show no involvement of the patient
• 29% of care plans do not include a discharge plan
• 20% of visits showed evidence of  de facto detention

Many of the failings identified have remained the same for 2 years.

There is still highly disproportionate detention rates for the following groups:

Black African (2.2 times higher),
Black Caribbean (4.2 times higher),
Other Black (6.6 times higher)
and Other groups (2.1 times higher).

There was also a finding of the widespread usage of blanket rules that have no basis in law. The staff enforcing them were often unable to say why the rule existed. So, illegal and illogical then?

The section on access to healthcare whilst in hospital is shocking and distressing. Some would have thought that a hospital was the very place to get healthcare. Apparently not.

The report states note that access to IMHA has increased - 92% of ward managers say the ward has direct access to IMHA services but given that 18% of people aren't told of their right to an IMHA it's difficult to see how this translates into meaningful access. Also last year's report stated that the lack of consistent ward presence meant that many people had no meaningful access to an IMHA. Use of compulsory powers of the act have risen in the past year, funding for IMHA hasn't. Not sure how access to IMHA has significantly raised in this environment.

There's also a case study about IMHA that I find really unusual. I'll almost certainly be writing more about that, but if you're curious, please read pages 10 and 11. I'd like to hear your comments.