Re: Judging the benefits and harms of medicines - who is to judge?
This is an interesting article and raises and discusses many valid points. There does however seem to be a lack of attention to gathering and responding to feedback from real patient experience of actually taking the medicines in real life circumstances - and perhaps over long periods and in combinations with other medicines.
I have spent the past 4 years trying to facilitate 'feedback' to the medical profession of the actual experiences of patients - and have found a very disturbing widespread response of 'blind eyes' and 'deaf ears'.
This has let to me raising a Public Petition at the Scottish Parliament (1) on behalf of a patient self-help group 'Recovery and Renewal' which I co-founded in 2013 . This petition urges the Scottish Government to acknowledge and take action on the issue of prescribed drugs associated with dependence and withdrawal, as called for by the BMA in their press statement in October 2016 (2).
Below is the statement that I gave for the Scottish Government Public Petitions Committee at their first consideration meeting on 29 June 2017:
"I am here today to represent many people in Scotland who are not well enough to be here in person. Some courageous individuals have provided clear evidence to the committee on the terrible suffering that is being endured as a consequence of taking antidepressants and/or benzodiazepines, as prescribed by their trusted doctors. We have previously raised our concerns directly with the doctors, with national health service representatives locally and nationally, with MSPs and with the Cabinet Secretary for Health and Sport. We actively contributed to the British Medical Association board of science’s 2014 United Kingdom research and are taking part in the BMA’s on-going work on prescribed drugs associated with dependence and withdrawal.
Our focus now is on raising political, press and public awareness of the issues in Scotland, complementing the activities of the all-party parliamentary group for prescribed drug dependence at Westminster (3). The Scottish Parliament information centre summary links to the current official medical guidance and policy, and it also outlines the recent BMA recommendations.
We have found major discrepancies between what the official medical guidance would have us all believe and the very different actual experiences of patients. The SPICe briefing states:
“despite the licensing procedures and guidance ... it is ultimately the decision of clinicians to decide whether or not a drug should be used in the treatment of their patient”.
That is a comment that seems to come back time and again in response to any questions.
Clinical trials of medicines are usually carried out over relatively short periods. Patients may be prescribed these medicines over very long periods, perhaps in combination with other medicines. We have found that individual reported patient experience is frequently ignored, put down and disbelieved by clinicians. The clear medical guidance is that benzos should be prescribed for a very short time only, but that is not happening. There is substantial evidence for prescribed benzo dependence and withdrawal issues going back decades. In contrast, medical guidance for antidepressants is that they should be taken for at least six months, and then they are commonly prescribed indefinitely.
There are now many people who have been on antidepressants and/or benzos for twenty years or a lot longer. Long-term harm is now clearly apparent. Safe tapering after different periods of prescribed treatment is fraught with difficulties for patients. The very few—mostly online—support groups that exist have for years been informally gathering evidence on a trial-and-error, ad hoc, patient-report and patient self-help basis. That genuine experiential patient learning and sharing has been largely dismissed, disregarded and even denigrated by the medical profession.
Now that there is a great deal of patient communication via online social media, as well as extensive internet availability of research and medical information, patients often come to know much more about their own conditions than their doctors possibly can. When patients try to discuss what they have learned, doctors patronise them and say that they should not believe anything that they find on Facebook or the internet. Those patients find themselves perceived by their doctors as troublesome and difficult heart-sink patients, and acquire psychiatric diagnoses such as personality disorders and medically unexplained somatic, functional or conversion disorders.
I refer to the diagram in my written submission, which summarises the pattern of the patient journey that we have now observed across numerous accounts by patients of what has happened to them. The fact that patient medical records are confidential to doctors turns out to have unexpected consequences for patients. Self-reported serious drug-effect symptoms have been noted in medical records but have not been acknowledged by doctors as drug effects, and instead further medicines have been prescribed for the reported symptoms.
Complaints procedures tend to be perceived as threatening to doctors. The medical defence organisations encourage doctors to do what any other doctor would do and to comply with current medical guidelines. If patients complain, it results in professionally defensive responses, so adverse drug effects continue to be unrecognised for what they are and are not reported to the regulator. There is no provision for systemic patient feedback and constructive learning.
To sum up, patients are suffering very serious harm from taking these medicines as prescribed. Dependence and withdrawal problems are causing untold damage; doctor-patient relationships are being destroyed; and all parties are suffering. The consequences are utterly desperate.
Long-overdue recognition of these issues will open the door to honest communication and genuine collaboration, leading to the establishment of appropriate national, regional and local support services and facilities for those who need them and, most importantly, urgent prescribing guideline reviews and updating of doctor education. The principles of the duty of Candour surely apply here. Given the focus of Scotland’s “Realising Realistic Medicine” (4) on “listening” to patients, “shared decision-making” and “collaboration”, I hope that we can show by example what that means in real practice.
This is raw genuine feedback from the public and patients.
I will end my statement by citing “Black Box Thinking: The Surprising Truth About Success” by Matthew Syed, who says:
"The anatomy of progress is adapting systems in the light of feedback."
Thank you. "
Competing interests: No competing interests