Overshadowed

A couple of years ago I did some work around inequalities in healthcare; the fact that people with mental health problems or learning disabilities tend to get significantly poorer access to and outcomes from health services. This was a reaction both to the many examples I’d come across through working with advocacy organisations and the BMA report that showed that diagnostic overshadowing (i.e.  ascribing physical health complaints to issues relating to mental health or disability) contributes to a shortening of life expectancy of between 10 – 15 years.

Sometimes these issues are framed in terms of a shortfall in the person; that the person can’t speak up or articulate their problems well. Or that there is an intrinsic interlinking of mental health and physical health pathology. I’d like to offer an alternative narrative, but to do so I have to give some additional context.

There was a time when I was able to keep personal and professional stuff completely separate. Some of you will know that this kind of ended when I was open about my experiences with depression. In one post I talked of trying to view my depression as a state from which I was recovering rather than a one-off incident like a car crash. The comparison wasn’t arbitrary. I’d recently been in car accident and was sure that the road to recovery would be swift. Now, almost two years later, I am still dealing with spinal pain. Though I am a fan of irony it is little compensation for the pain and the impact that has on my life.

So what does this have to do with anything? Well, a little while ago after the physio had said I had a clear and consistent problem relating to a couple of my vertebrae I was sent for an MRI scan. When I phoned my GP surgery to find out the outcome, the doctor that I spoke to said that the results were unclear as the image not good enough for diagnosis. No problem there, such things happen. The next thing they said surprised me, though it really shouldn’t have. In short it was along these lines (paraphrased for brevity) :

GP:         I see from your notes that there are references to depression. Are you sure that the pain isn’t just an expression of that?

Me:        I’m pretty sure. I think it’s more to do with being in a stationary car that was hit from behind by a car going over 30 mph. The pain started about an hour after the incident. It hasn’t changed for 2 years. I’m pretty sure that’s the more likely cause.

GP:         But you might not know how depression can affect the way you perceive pain. Are you sure it’s not about that?

Me:        No, I’m pretty sure it was the car accident. I know a bit about depression, this isn’t part of it. By the way, how did you jump from “the image isn’t clear enough for diagnosis” to “are you sure it’s not in your head?”

GP:         Erm…

There’s a wonderful idea in logic called Ockham’s (or Occam’s) razor. It basically means that  if there are a competing ways of explaining something, you should choose the explanation that relies on the fewest assumptions. The GP assumed that it was more likely that I would experience back pain as an expression of depression. I assumed that it was more likely to be down to being rear ended by a car.

The GP assumed that an unclear MRI scan was down to my depression. (No, I don’t get it either). I assume it’s more likely to be down to having to lie on my back for a scan on an injury that is exacerbated by any pressure being put on my back. I would say that I’d leave it to you decide which was the more likely explanation, but we’d both know I was lying.

I was able to talk this through with the GP, we got to a reasonable endpoint. But I absolutely felt as if a health problem with a definably physical cause (it even had a registration plate for goodness sake) was being put down to my past mental health. It takes a pretty big assumption to overshadow a car.

So I’m offering this up as an example. Whether we call it diagnostic overshadowing or the credibility gap, the problem can’t be located solely in the person who is disadvantaged in healthcare. It’s not just about being able to speak up; I can do that. It’s not about a lack of articulacy; I hope I’ve shown I can manage to string a few words together. It’s not even about mysterious causes. Cars have not been mysterious since the early 1900s. The problem is caused by the fact that, regardless of how  much it strains Ockham’s razor, too many people think that mental health problems somehow preclude physical ill health.

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.

Quality Performance Mark Update

In the last few months I’ve been asked by a number of people what is happening with the Quality Performance Mark. The future of the QPM has been up in the air for a while but now appears to be settled.

NDTI have taken on the QPM and are going to be going through a review process in the next few months. I understand that this means it will not open for submissions or renewals until April next year.

I’m proud of the role I played in developing QPM. Good luck to NDTI in their work of defining, assessing and celebrating protect high quality independent advocacy; protecting empowering services that make sure people’s rights are a reality. Something as important as advocacy has to be done well.


If you have any enquiries about the QPM they should be sent to a4aqpm@ndti.org.uk

Whitewash and Wonderland

Anyone who has been following @sarasiobahn’s remarkable blog My Daft Life will know about the death of her 18 year old son whilst he was in an NHS care facility. In Sara's blogs, her son (referred to as Laughing Boy, LB or The Dude) comes across as a remarkable person. This young man had epilpesy, and he died whilst having a bath in an assessment and treatment unit. It is appalling that she is having to face the aftermath of this loss. It is obscene that the investigation into his death has become a battle.

She is now having to navigate her way through an internal investigation into the death of her son, and the nature of that investigation is becoming a little strange. It’s a worrying example of the lack of transparency of the NHS when dealing with failings. All those words about involving families, learning from events, transparency and openness that have appeared in so many reports recently seem stretched to breaking point here.

One aspect of that bizarre process is the trust's odd use of the word advocate. I know a bit about advocacy - I've spent the last 10 years developing standards and quality systems in advocacy. I'm interested in the relationship between formal and natural advocates. I think both are vital. Until processes and services are designed to suit people rather than systems people will need advocates of one kind or another.

Sara was told that she could have an advocate at stages of the investigation. This could be seen as a way of bringing some transparency to the process. By “advocate” they meant a friend or family member. No problem there; friends and family members often play a natural advocacy role. It’s not the same as an independent advocacy role (the thing that I know most about) because family and friends automatically have a level of conflict of interests, they have another role in that person’s life. As I said, not a problem when that is the person that someone wants to be involved. It’s an odd use of the term advocate, but it does have an echo in a piece of research on the value of advocacy and supporters in child protection proceedings.

The trust could have suggested that she could have an independent advocate; someone who would have no other role in Sara’s life, who would look out for and avoid conflicts of interests. That’s something that would be a legal right if this were a complaint process rather than an investigation. But that’s not what happened. As it turned out Sara asked a friend who also happened to be an independent advocate to be involved.

Then something odd happened. The trust said this person couldn’t be the advocate because they had a conflict of interests; she occasionally volunteers for a charity whose Chair used to work for the trust’s predecessor. I find it hard to see that as a realistic conflict of interests. And let’s remember, the trust had specifically not tried to find an advocate without a conflict of interests.
How big is the possibility of conflict of interests? Well, if the “advocate” worked for the trust it would be a BIG conflict. Used to work for the trust? Some conflict. Worked for a former worker of the trust – potential conflict. Volunteered for an organisation, being supported by someone who reported to someone who had retired from the predecessor of the trust? The phrase vanishingly small comes to mind.

I make it four degrees of separation. There's a theory that you'll be able to connect to anyone in the world in six. Given that, it would be hard to find anyone in a local area that can’t be connected to someone else through in four links.

Then the trust appear to have made an even stranger decision. They said that Sara had now forsaken her right to choose an advocate and that one would be appointed for her. And that this “advocate” would not be able to tell Sara about what was happening in the investigation.

So that’s someone that wasn’t asked for and who will keep information confidential from the person they’re meant to be representing. That’s not independent advocacy. It’s not a natural advocate. It doesn’t conform to any of the principles or reasonable expectations of what any type of advocate might be. I don't see how it can realistically be described as any form of advocacy. In fact, the word advocacy can only be used if the trust are employing the Humpty Dumpty convention that “words mean whatever I say they mean”.


So there was no advocate. A measure that was meant to introduce some transparency into an internal investigation into the death of a young man had been warped into another aspect of the investigation from which LB’s parents are excluded. The window into the investigation was blocked up. The circumstances of the death of LB need to be thoroughly and transparently. But how can anyone have confidence in the process where transparency is whitewashed, where Humpty Dumpty investigates?

Pressure from Sara's team of supporters and social media has led the Trust to reconsider, and Sara's original advocate is now to be involved again. As she said on an update post,

"Thanks to Team LB for such an instant and remarkable response to her removal, and the power of social media for such dedicated and collective support. And good on the Trust for listening and responding."
I'm really glad that this has changed, but this should never have been necessary. There should never have been a need to struggle and battle for support. It wouldn't have been needed if the trust had remembered that the focus here must be on Sara, her family and The Dude. Here's hoping the change on advocacy reflects a wider change.

Comparative law - that's the way it is

Comparative law

Anyone remember the riots?

You know, the disturbances over a couple of nights in a few cities. A few hundred people were involved and the media was all over it. Come on, you must remember it. All night courts and massively harsh punishments delivered to make people clear that “this will not be tolerated”. Nick a bag of rice? That’ll be two years in jail. Remember it now?

OK.

Anyone remember the Mental Health Act? You know, that piece of legislation that was meant to protect rights of people in  psychiatric hospitals; a reaction against the barbarous excesses of the old asylums. The one that was amended in 2007 to ensure that people had support in understanding and making use of their rights. Oh you must remember it, the CQC report on it every year. They always say how people aren’t being given what is theirs by right. They talk about unlawful detention, of using the threat of being sectioned to keep people on the ward. They’ve reported year on year that the law is being broken in thousands of cases. God, the judges mustn’t be able to catch a break, eh? All night sittings for a few hundred offences, imagine what the work load is for dealing with these ongoing, systematic breaches of the law.

What’s that? No prosecutions? Not one? Well, surely it can’t be through lack of evidence, I mean there’s reams of the stuff in the CQC reports. And surely it can’t be through a lack of access to legal systems, I mean it’s the CQC. They must have a lawyer or two knocking around the place. Surely they’ve not been hamstrung by cuts to legal aid.

So what’s going on?

To the untrained eye it appears that depriving someone of their liberty and dignity are things best addressed by holding up a mirror and going tut. Depriving a supermarket chain of a bag of basmati will bring down the full force of the law. To my untrained eye this  is wrong.

It’s a comparative law system. Some laws are enforced, others are write only documents. What happens when a health service or one of its employees breaches the mental health act? What is the penalty when this is done again and again, year after year? Where is the motivation to change when your failings are reported on but nothing happens?

Laws or frameworks that are not enforced are mere fig leaves of protection; they tell us what should be and ignore what is happening. This has a corrosive effect on people’s understanding of the law and of their rights. As I remember the reason for punitive sentencing of rioters was that the rule of law would otherwise be undermined. The number of people who put up with injustices in the care system because “that’s just how it is” tells us that the rule of law has already been undermined here. Something needs to change.