Doctors DON’T always know best, experts say as they urge GPs to ditch ‘paternalistic’ view and take patients more seriously

Clinicians have been urged to scrap the age-old ‘doctor knows best’ attitude when diagnosing illnesses.

Experts said the ‘paternalistic, and often dangerous’ view should change ‘to a more equal relationship’ where patients’ own experiences are taken on board.

It comes as a study led by the University of Cambridge and Kings’ College London found a patient’s view of their own symptoms or illness is not valued by the majority of clinicians.

Patients told how they were made to feel ‘degraded and dehumanised’.

Researchers analysed data from 676 patients and 400 doctors quizzed about their experiences of diagnosing neuropsychiatric lupus (NPSLE), an incurable illness that is notoriously tricky to diagnose.

GP workforce data for May 2023 shows there are 27,200 fully-qualified GPs in England. This is down from 27,627 one year earlier. GP numbers peaked at 29,537 in March 2016

Graph shows the ratio of GP patients to practices since 2015, with an average of 9,755 patients per surgery in May 2023

The condition has ‘invisible symptoms’ such as headaches, hallucinations and depression, with no specific biological test, meaning that diagnoses are often based on the patient’s reported symptoms. 

Despite this, the study revealed that doctors ranked patients’ self-assessments as the least important out of 13 different types of evidence used in diagnoses. These also include brain scans and response time to treatment. 

Patient self-assessments were ranked in the top three most important by just 3.8 per cent of all medics questioned. 

Doctors ranked their own assessments as the most important factor, even though they could not be confident in ‘invisible’ symptoms. 

Almost half (46 per cent) of all patients quizzed said they had never or had rarely been asked for their self-assessments of their disease, according to the study funded by the Lupus Trust and Lupus UK.

Just under a quarter (24 per cent) also reported that their self-assessment of disease activity was never or rarely consistent with their clinicians’. 

Writing in the journal Rheumatology, researchers said male doctors were more likely to believe that patients were over-playing their symptoms.

Ethnicity and gender were also felt to influence diagnosis, particularly a perception that women were more likely to be told their symptoms were psychosomatic. 

Sharing their diagnosis experience with the study team, one anonymous patient said: ‘You are giving up control over your own body, and I’ll tell them my symptoms and they’ll tell me that symptom is wrong, or I can’t feel pain there, or in that way.’

They added: ‘The entire thing has been so protracted, and degrading and dehumanising… If I had continued to have regard for clinicians’ expertise over mine I would be dead.’

One GP in England also told researchers: ‘It is common for women especially to be told that their symptoms are psychosomatic… as soon as emotion is displayed it all too commonly becomes the cause of everything else. This bias causes medical negligence.’ 

Sue Farrington, co-chair of the Rare Autoimmune Rheumatic Disease Alliance, said: ‘It’s time to move on from the paternalistic, and often dangerous, “doctor knows best” to a more equal relationship where the patients with lived experiences and the doctors with learnt experiences work more collaboratively.’

Meanwhile, Dr Melanie Sloan, the study’s lead author and public health and primary care researcher at the University of Cambridge, added: ‘It’s incredibly important that we listen to and value patients’ insights and their own interpretations of their symptoms, particularly those with longstanding diseases.

‘After all, they are the people that know what it is like to live with their condition.’ 

NPSLE affects the brain, spinal cord or other nerves, with symptoms such as seizures, strokes and psychosis. Despite this, the study found doctors ranked patients’ self-assessments as the least important out of 13 different types of evidence used in diagnoses. These also include brain scans and response time to treatment 

The researchers acknowledged, however, that some clinicians did value patient opinions. Others also raised concerns over the effectiveness of diagnostic test evidence.  

One psychiatrist interviewed for the study told the team: ‘Patients often arrive in clinic having had multiple assessments, having researched their own condition to a very high level and having worked hard to understand what is going on with their own body… they are often expert diagnosticians in their own right.’

Another neurologist added: ‘The disease is affecting your blood vessels, we often can’t test this, but that is very systemic, the nerves in your blood vessels are everywhere, so why wouldn’t that be an explanation for lots of these neurological symptoms these lupus and other autoimmune patients get? 

‘There is this systemic diffuse presentation that is very hard when doctors think in that very limited box of neurology to localise.’

Senior study author Dr Tom Pollak, of the Institute of Psychiatry, Psychology and Neuroscience at King’s College London, added: ‘No human being is always going to be able to accurately pinpoint the cause of symptoms, and patients and clinicians can both get this wrong.

‘But combining and valuing both views, especially when the diagnostic tests aren’t advanced enough to always detect these diseases, may reduce misdiagnoses and improve clinician and patient relationships, which in turn leads to more trust and more openness in symptom reporting.’