From chains to cobras: how fixation is disturbing English dementia policy

Neurobonkers writes:

“Have you ever found yourself taking an exam, working on a tight deadline, or solving an important time critical problem and becoming stuck; unable to progress because you’re brain won’t let you move on until you remember a piece of information that is on the tip of your tongue?”

Martin Bromiley has been instrumental in describing this “fixation problem“.

Bromiley’s case, of failed anaesthesia in a critical situation, was described in a 2010 paper in the journal Anaesthesia which looks at the fixation problem with an experimental analogy. It has repercussions for patient safety in the contemporary NHS.

Consider the following “cheap necklace problem”. Your aim is to make a necklace that costs no more than 15 cents using the four chains below. It costs two cents to open a link and three cents to close it again. If you are struggling to solve this problem then you’re not alone – 97% fail to solve the cheap necklace problem.

CHAINS

To solve the cheap necklace problem we must break the links in one of the chains, costing us six cents and use these three links to join the remaining chains.

It turns out that over 90% of adults can’t solve this problem successfully – as they become fixated on the impossibility of it.

In dementia policy, the gaming of the ‘ambition’ for diagnostic rates has become much more significant that the value of the diagnostic rates themselves. Calling them ‘ambitions’ rather than ‘targets’ is a vacuous exercise of meaningless circumstance.

Through a change in algorithm, a GP practice can have wildly different rates of diagnosing dementias from one year to the next. And policy should rightly approach this issue with fear – when human mortality standardised ratios were gamed it led to real problems.

In the Australian jurisdiction, certain institutions were alleged to respond to an unfavourable HSMR by “gaming” administrative data and risk-adjustment models or implementing inappropriate changes to care.

And it became relevant to Mid Staffs too.

“A symptom of this cycle is the gaming of data and goals; if the system is unable to be better, because its people lack the capacity or capability to improve, the aim becomes above all to look better, even when truth is the casualty.”

The national pressure to make diagnostic rates appear better plays scant disregard to the actual epidemiological data from the MRC CFAS work to show that the prevalence of dementias in England has in fact been falling.

Also, the appearance of a greater number of dementias being diagnosed in primary care bears little or no relation to the ability of GPs to diagnose certain young onset dementias, for example the behavioural variant of frontotemporal dementia where insidious personality change is the presenting symptom not problems in short-term memory.

If you’re not worried about this situation, you should be.

Dr Martin Brunet in an excellent talk yesterday at the King’s Fund in a satellite session on diagnostic rates brought the audience’s attention to the “cobra effect”, which stems from an anecdote set at the time of British rule of colonial India.

The then British government was concerned about the number of venomous cobra snakes in Delhi. It therefore offered a lucrative bounty for every dead cobra. Initially this was a successful strategy as large numbers of snakes were killed for the reward.

Eventually, however, “enterprising” persons, ‘doing things differently’, began to breed cobras for the income. When the government became aware of this, the reward program was scrapped, causing the cobra breeders to set the now-worthless snakes free. As a result, the wild cobra population further increased. The apparent solution for the problem had no effect on the underlying problem; arguably it in fact made the situation ultimately far worse.

The rather-sensationally labelled “cash for diagnoses scandal”, with GP practices being paid handsome incentives for dementia-related work, was viewed by many to be a low-point in QOF overplaying their hand in England: “an ethical travesty“.

In my discussion at this satellite session for the King’s Fund, I argued that this fixation problem in English policy is a significant issue. It is setting patients with dementia up for a fall; in gaming the diagnostic rates, perhaps as a result of political pressure from the current Government prevents one from moving onto the other, at least as important, issue of post-diagnostic support.

Later in the panel discussion, Beth Britton, leading campaigner in dementia issues, called it a “black hole” of post-diagnostic support currently.

There was a strong consensus from the audience members of our Q+A session today that it was intolerable that social care was on its knees, with social  care poorly funded, care home standards for people with dementia often quite inadequate. Even though this is a historic problem, it appears not to be fixed by the current focus on ‘dementia friendly communities’ or diagnostic rates. But it is a pressing issue, and one of massive societal significance.

It is also, significantly, an issue of resource allocation. The ‘zero sum gain’ of more money being put into practices which can successfully game targets at the expense of money being put into an adequate social care is a very real one, but these funding inequities will take longer than one term of government to solve.

Possible approaches for ‘beefing up’ post diagnostic support or care might include dementia advisers, clinical nursing specialists, an enhanced social care practitioner workforce, or care coordination.

A redistribution of allocations must take place, and integrated, whole person care, is unsurprisingly therefore a top priority now, even though everyone has been talking about it for ages.