Is the BMJ – and the medical profession that it represents – really ‘listening to patients’ and the public?
Fiona Godlee’s recent Editor’s Choice ‘On the line between patient and population health’ (1) refers to research showing that ‘socioeconomic adversity not only shortens lives but also accelerates disability, the very opposite of healthy ageing’. She goes on to mention research that ‘new drugs are not the answer’ and touches on the tensions and moral distress felt by doctors expected to ‘act as guardians of both individual and population health’.
This editorial comment begs another question: what about the role of ‘medication’ in shortening lives and causing long-term ill-health and disability? It is no surprise that antidepressant prescribing is particularly high in areas of socio-economic adversity (2). Patients have for years been trying to flag up very serious issues with ‘lived experience’ of the effects of drugs prescribed for anxiety and depression and this factor will doubtless be contributing to – and indeed exacerbating - the socio-economic issues affecting population health and ageing.
Our Scottish Parliament public petition PE01651: ‘Prescribed drug dependence and withdrawal’, lodged May 2017, is gathering substantial published evidence on its Scottish Parliament web-page (3). This includes many actual patient experiences, as well as government, institutional, professional and individual input. Evidence is being submitted from Scotland and from other countries.
As explained in the ‘petition background’, we had previously already attempted to engage collaboratively with the medical profession and politicians. We have been involved with the British Medical Association (BMA) Board of Science project working on this issue since early 2014. Our Petition calls for recognition of the BMA published findings, 2015 (4) and BMA call for action, October 2016 and updated (5).
We are invited to participate in the BMA Board of Science round-table stakeholder meeting scheduled for 18 April 2018.
Our Scottish petition is being widely shared via Facebook and online patient self-help groups (these are un-funded and non-commercial). The patient-experience petition evidence includes personal accounts from individual men and women of all ages and backgrounds. For those who have had acute adverse reactions, some have been left with severe nervous system damage after just brief exposure to the drug. For others, many years may have elapsed before long-term problems made it necessary to try to ‘come off’ the drug(s) – and attempted withdrawal has been catastrophic. Several cases of life-threatening serotonin syndrome have been missed by doctors and the symptoms further poly-drugged. The accounts describe shattered lives, relentless desperation and deep enduring suicidality, suicide attempts and actual suicides. All accounts have been formally processed by the Scottish Parliament Petition team, according to their official rules, prior to online publication.
Whilst diverse and unstructured, this collected narrative evidence is showing up stark issues: patients’ suffering is variously described in the detail of the individual evidence – devastating effects on lives, relationships, employment and families. The thread running through every single patient account (100 +) is that of doctors prescribing powerful drugs which they believe to be ‘safe and effective’ but which have complex neurological (central and autonomic nervous system) effects which prescribers do not seem to understand. Patient experiences are being disbelieved and discounted. People have no idea that these common medicines ‘taken as prescribed’ are making them so unwell – killing them quickly or slowly.
It is especially alarming to see the number of individual submissions which relate experiences with start dates long after our (and even BMA) attempts to raise concerns – and to realise that all our awareness-raising efforts are simply being ignored and overridden by the medical profession.
This is a very significant public and population health issue. For individuals who cannot metabolise the drugs, suicide or fatal toxicity is a very high risk. For the majority of others, common side-effects of antidepressants include enduring serious sexual problems, weight gain, digestive problems, debilitating fatigue and numbed emotions – as well as other confusing and bewildering symptoms. Clearly these ‘side-effects’ contribute significantly to other health, relationship, social and economic issues – as well as the rising NHS burden of chronic ill-health. The published patient submissions illustrate consistently that the ‘first prescription’ came about at a time of human stress/distress such as study/work/relationship/family issues, new baby, bereavement, traumatic experience or other life transition.
Most worryingly, as time elapses it is becoming abundantly clear that ‘the evidence’ of prescribed harm is being actively attributed to vague psychiatric diagnoses such as ‘medically unexplained’, ‘functional’ and ‘somatic’ disorders. Patients suffering complex, serious and disabling symptoms - from prescribed drug damage and neurotoxicity - are being directed to websites such as http://www.neurosymptoms.org/ and encouraged to engage in (perhaps online) Cognitive Behavioural Therapy (CBT) and acceptance of their mysteriously acquired disability. There is emphasis on locating problems in the patients’ own early life experiences – and socio-economic circumstances - without any reference whatsoever to the all-important life-time ‘medication history’ and its own trail of havoc in the life and health of the patient.
On 18 January 2018 the petition committee took oral evidence from Scotland’s Minister for Mental Health and Principal Medical Officer: despite petition evidence to the contrary, it was asserted confidently that more people should ‘be prescribed antidepressants, at higher doses and for longer’.
On 24 January 2018 Public Health England announced that it was launching a year-long review into prescribing of medicines including antidepressants. Marion Brown wrote to BMJ on the topic of whether ‘action should take priority over further research on public health’ (6).
On 22 February 2018 the Royal College of Psychiatrists (backed apparently by Royal College of General Practitioners) issued confident national press statements about efficacy of antidepressants – and suggested that many more patients should be prescribed them. This was reported in the BMJ news article ‘Large meta-analysis ends doubts about antidepressant efficacy’ (7) and Fiona French, Des Spence, Peter Gordon and others responded. Alyne Duthie wrote to the Herald Scotland that ‘Antidepressants are not at all as benign as we would wish them to be’ (8).
GP Des Spence is publicly supporting our petition and has written in Pulse ‘Time to listen to patients about prescription problems’ (9). Between us we have had many other articles, letters and responses published in the Scottish press and medical journals including BMJ and BJGP over the past year.
A similar public petition, led by Stevie Lewis, is gathering evidence at the Welsh Assembly (11).
A public consultation about ‘suicide prevention’ is being formally conducted in Scotland. Beverley Thorpe has written about this in connection especially with antidepressants and another related Scottish Petition PE01627, ‘Paradoxically speaking … more drugs, more suicides’ (12).
It is becoming abundantly clear that the Royal College of Psychiatrists is vigorously promoting the drugs whilst downplaying the realities of withdrawal (13). GPs are prescribing them and having to deal with consequences which they do not understand. Patients are paying the ultimate price and being passed back to psychiatry and neurology, who have nothing to offer to alleviate the damage sustained.
The BMJ professes to encourage ‘patient engagement’, ‘patient-partnering’ and listening to patient perspectives. The events of the last few months especially seem to make a very sick joke of this. Patients are coming together themselves to try to communicate, via formal public petition, with the medical profession and politicians about the deeply questionable safety of these commonly prescribed medicines – and the devastating effects on patient and population health as a whole.
Fiona Godlee (1) quotes that “NICE guidance asks GPs to act as guardians of both individual and population health”. This is indeed deeply morally distressing for GPs, who carry prescribing responsibility and are obliged to ‘follow professional guidelines’- which seem to be deeply flawed.
We would like to acknowledge the very significant work that is being sensitively undertaken by the Scottish Petition Clerk team in the processing of the large volume of submissions received for PE01651, and sincere consideration by the Petition Committee.
We thank every courageous individual for sharing the immensely painful, personal and harrowing experiences as publicly available personal evidence for our petition.
Professional support is hugely appreciated, especially when risking professional repercussion for publicly expressing views and support.
(1) https://www.bmj.com/content/360/bmj.k1408 BMJ 2018;360:k1408
(2) https://www.theguardian.com/society/2017/apr/14/antidepressants-prescrib... .
(5) https://www.bma.org.uk/collective-voice/policy-and-research/public-and-p... .
Competing interests: No competing interests