In this piece, Lilian critiques a recent NHS England policy that has led to doctors getting paid extra for diagnosing dementia in their patients. The author articulates important insights in her assessment, addressing both healthcare and social policy implications, and finishes by proposing a potential way forward.
By Lilian Kennedy (Editor)
In recent months NHS England has created a new short-term, one-time incentive scheme designed to increase the number of dementia diagnoses made by GPs (general practitioners). The scheme pays GPs £55 per diagnosis and is part of NHS England’s ‘Dementia Identification Scheme.’ This 5 million pound program incorporates the first financially backed incentive in England covering a specific diagnosis. The incentive shows the gravity of dementia extends beyond healthcare and is increasingly becoming both an economic and political issue. NHS England has been facing major backlash for this scheme, with many groups rallying to have it withdrawn.
The most common critique made is that such an incentive is ethically dubious. This concern has been voiced by GPs, notably by Dr. Martin Brunet who argues that “[t]o contaminate this process [of diagnosis] with a financial payment seriously undermines the doctor-patient relationship in a new and pernicious way.” (1) Qualms about what this financial incentive might do to the patient-doctor relationship rest largely on fears that it will threaten patient’s trust in their GPs. Dr Brunet goes on to ask, “How will our patients feel if they knew? If you can look them in the eye and explain why you should be paid according to the diagnostic label you apply then go ahead and sign up—I for one could not do that.” (2)
Critics are also concerned that this incentive plan might make patients feel they will be misdiagnosed for the sake of a £55 incentive. Dr Peter Gordon states that when a similar push for diagnosis was made by NHS Scotland in the past years, “…elderly patients were misdiagnosed with ‘early dementia’ as a result.” (3) Meanwhile however, other GPs "...don't think for one minute….[doctors] would make a false diagnosis in order to earn £55." (4)
This debate touches on the vulnerability of the relationship between doctor and patient, and how this very crucial and private encounter can be jeopardized by something very little. It calls attention to the inherently private and personal nature of the doctor-patient relationship in which both parties interact at an individual level. The nature of this relationship becomes threatened because it now takes on a public element. An elderly patient might feel as though they have become a potential quota tick, and that their very personal worries about memory and forgetfulness are not just concerns to be shared with their doctor, but part of a larger public policy with monetary implications.
I suspect that many who visit their GPs feel that their Doctor would not make a false diagnosis for cash. Such presumed facts of the matter can mean less however than that nagging doubt or hint of rumour that doctors might indeed be swayed, particularly when the gravity of a dementia diagnosis hangs in the balance. It also skates over what else is at risk for elderly patients and their families with concerns about dementia. A diagnosis is not only a medical affair, but instead extends well beyond the GP’s office. There is much at stake—socially, financially, legally, emotionally—for both patient and their family when a dementia diagnosis is made. Simply put, it is scary. A diagnosis is not a cure, instead the beginning of a tough journey for patients and families alike and seeking a diagnosis may feel too risky in the midst of even further uncertainty created by the £55 incentive.
Chief executive, Katherine Murphy, of the Patients Association has stated, “This is putting a bounty on the head of certain patients. Good GPs will be diagnosing their dementia patients already.” (5) This echoes Andi Silvester, manager of The Taxpayer's Alliance Campaign Manager when he posed the question, “Aren't GPs already paid to diagnose diseases and illnesses via their wages? It seems bizarre that you would hand out extra payments to GPs just because the patient walking through the door has dementia rather than a sore throat.” (6) This raises a valid point. While I do agree that this incentive is problematic, Silvester’s comment particularly, raises concerns of my own.
Comparison of dementia to a sore throat perhaps belies a certain ignorance about the complicated and contentious process of dementia diagnosis. While not the same as diagnosis, there is suspicion expressed among GPs about murky political motivations for a push for dementia diagnosis (7) based on the fact that currently, dementia screenings are not recommended by the UK National Screening Committee. (8) Further, a dementia diagnosis itself is not straightforward. Many forms of dementia cannot be diagnosed with certainty until autopsy, and presently there are no definitive tests and much contention about different tools. There are no agreed upon parameters among experts for assessing findings based on brain imaging and scans, memory tests and scales, blood tests, cerebrospinal fluid samples, among others. These tools are not considered a necessity by all doctors and may also not be an available resource. Given this diagnostic uncertainty, the process for diagnosing dementia is more involved than diagnosing a sore throat, and relates to what NHS England's Chief Executive Simon Stevens has named as one of purposes for the incentive, “...there sometimes are extra costs for GPs in going about those kinds of screening and diagnosis – that is what this is aiming to help.” (9)
The reality of the diagnosis process also relates to how contentious and complex the current state of dementia science is - there is currently no treatment or cure for the majority of diagnoses which fall under the umbrella of dementia, and no consensus on what causes most types or how it may be prevented. Instead, a few treatment drugs exist that may be able to slow down the symptoms related to dementia, but cannot alter the course of the disease. Current scientific and pharmaceutical research into dementia causation, pathology, prevention and cure is also slow-going, hindered by political and research obstacles alike. It also treats dementia as largely a biological problem. (10) The current state of clinical and pharmaceutical research into dementia places hopes for cure or treatment as a future possibility, at best. However, the call for dementia diagnoses, this incentive aimed at increasing diagnosis rates, and most importantly, the reality of living with dementia demands attention in the present. And it is with this in mind that I think some overlap between criticism of the incentive scheme and a long-term aim of the incentive might perhaps be found.
Many critics have argued that a problem with this initiative is its focus on diagnosis, rather than providing more funding to post-diagnosis social care. The personal patient-doctor relationship contextualizes diagnosis to show that it is not the most important part of an encounter between a doctor and patient with memory complaints—instead, what can be offered next to help in managing life with dementia, is far more important. NHS England has said it hopes that this incentive can “...ensure that people living with dementia are identified so that they can get the tailored care and support they need. This additional investment is part of a drive to ensure this.”(11)
While I have major qualms about this incentive, perhaps this shows a more realistic trend in how the growing problem of dementia care is being understood on a larger scale, beyond the doctor’s office. Or perhaps, it might allow for real conversation about what is needed in dementia care, a conversation that focuses less on distant hope of cure based in pharmaceutical treatments and more on the social reality of England’s growing dementia population. While I don’t think that incentivizing diagnoses is going to drive more GPs to make dementia diagnoses - current predictions point to growing populations that will be diagnosed regardless - the backlash this incentive has created securely position GPs on the side of the patient, and in defense of the doctor-patient relationship. This is powerful, and to be commended and harnessed.
NHS England released a statement late November that this scheme will not be renewed past April, incidentally, the governmental deadline to reach its diagnosis rate. (12) This points to its political unpopularity (13) though any regret over institution of the scheme has not been expressed by NHS England. (14) In taking a sliver-lining approach to the matter, GPs’ defense and outcry can be seen both as a salve to worries about ‘bribing’, and an importantly vocal demand that what dementia initiatives pay for and focus on, changes. A popular incentive funneling money toward ‘tailored care’ informed by GP, patient and family knowledge about the daily reality of dementia, instead of ‘increased percentage rates’, may just have to be the next move for NHS England in the aftermath of this unpopular scheme. In hopes of that, I’ll keep my fingers crossed.
- Lock M. The Alzheimer Conundrum. Princeton, New Jersey: Princeton University Press; 2013.