In April 2016, I was in a very difficult pace in my life. I had been diagnosed with depression, anxiety and emetophobia in 2011, and these difficulties led to the end of my 20 year career in the Uk Civil Service in 2013. I was prescribed an antidepressant and tried various psychological therapies, sadly with no improvement in my condition. Not being able to work, I felt a failure as a husband, as a father, and also as a person.
Having realised that my antidepressant drug was not making any difference to my emotional distress, I visited the doctor to ask about stopping them. At this point, I had been taking the drugs for 2 years. The doctors advice was “just take half a tablet for a week and then stop completely”. I found the process of stopping to be deeply unpleasant, I made repeated attempts to reduce, only to suffer physically with insomnia, nausea, panic attacks, dizziness, restlessness and agitation. This inability to reduce my medication intensified my feelings of being a failure.
My Doctor told me that what I was experiencing was a return of my original symptoms, but I didn’t agree because the physical effects were so much more pronounced and highly variable in nature too. Eventually I managed to reduce to the lowest possible dose available in pill form, but I wasn’t able to reduce further. I asked for a liquid version of my medication, but it was too expensive for my local health service to provide. I felt stuck and trapped, with no option but to continue with the drugs for the rest of my life.
Out of this frustration, I started a petition in April 2016 to raise awareness of the issue of withdrawal and to ask the medical authorities to look into helping those suffering protracted and difficult withdrawal from psychotropic medications. Following the petition, I was interviewed by the BBC, and contributed to a small number of newspaper and magazine articles. This was followed in April 2017 by a podcast, dedicated to sharing the experiences of those who had, like me, struggled to withdraw from psychiatric medications.
Having researched this problem, it is easy to see that many are struggling with these issues. Doctors lack any formal guidelines that enable them to support their patients and the advice that they do have access to cannot be complied with by their patients.
In 2014, a study1 of New Zealand adults taking antidepressants reported that 55% suffered withdrawal effects. The Royal College of Psychiatrists in their own survey2 found that 63% reported withdrawal effects (with some antidepressants as high as 82%).
The British Medical Association has recently highlighted the issue of prescribed drug dependance3. In May 2017, they wrote:
Prescribing of psychoactive drugs is a major clinical activity and a key therapeutic tool for influencing the health of patients. But often their use can lead to a patient becoming dependent or suffering withdrawal symptoms.
In the absence of robust data, we do not know the true scale and extent of the problem across the UK. However the evidence and insight presented to us by many charity and support groups shows that it is substantial. It shows us that the ‘lived experience’ of patients using these medications is too often associated with devastating health and social harms.
This represents a significant public health issue, one that is central to doctors’ clinical role, and one that the medical profession has a clear responsibility to help address.
That is why we have undertaken a project working collaboratively with key stakeholders to start to identify what positive action can be taken for the future benefit of patients. This has had a particular focus on the prescribed use of benzodiazepines, z-drugs, opioids and antidepressants.
On the 12th March 2017, an email arrived in my inbox from Dr. Peter Groot who was working at the User Research Centre of Maastricht University and it is a day that I will forever remember. I leaned with absolute amazement that Dr. Groot and his colleagues in the not-for-profit Cinderella Therapeutics foundation had been working since 2010 to create exactly what my petition referred to: Tapering Strips.
Wanting to know more about this project, Dr. Groot and I arranged an interview for the podcast. Like many great ideas, Tapering Strips are elegantly simple, they utilise pills of small dosages in combination and independently packaged, to create a foolproof method by which a patient can steadily and gradually reduce their psychotropic medication dosage. Dr. Groot and colleagues had made Tapering Strips available for 24 different psychiatric medications and had trialled the concept by Dr. Groot himself undertaking a blind trial4 to test the concept. The team have now helped over 2,000 Dutch patients to either withdraw completely or to reduce to a minimum, effective dosage of their particular drug.
Tapering Strips are an elegant, brilliant and simple solution to a problem that the medical profession has struggled with for many years: how to best help the users of psychiatric drugs withdraw safely and gradually, minimising the risk of relapse or withdrawal effects and giving the patient the best possible chance of successfully stopping their drugs.
I strongly urge you to back the campaign to implement this work globally, it has the potential to help millions of people, both patients and doctors alike. The work achieved by Dr. Groot and colleagues is groundbreaking and it needs your support. As usual with such paradigm challenging work, the politics are often more difficult to navigate then the scientific or technical aspects. Add your voice to the campaign to increase awareness of this work and petition your local politicians, health authorities and regulators to encourage them to understand, trial and implement this approach in your country too.
I want to personally thank Dr. Groot and his colleagues for this amazing project.
James Moore started a campaign in 2016 to raise awareness for the difficulties users face when they want to stop taking psychoactive drugs. Check out his website for more information.
James held an interview with Dr. Groot’s about tapering strips, you can listen to it here: http://www.jfmoore.co.uk/LTW_episode_24.html
Long-term antidepressant use: patient perspectives of benefits and adverse effects. Cartwright et al. Patient Prefer Adherence, 10, 1401-1407, 2016.
Coming off antidepressants. Survey of the Royal College of Psychatrisits.
Supporting individuals affected by prescribed drugs associated with dependence and withdrawal. British Medical Association.
Critical Slowing Down as a Personalized Early Warning Signal for Depression. Wichers, Groot et al. Psychother Psychosom, 85(2), 114-116, 2016.