In 2022, our current medical director, Nicole Lamberson, PA, and our late medical director, Dr. Christy Huff, participated in the James Lind Alliance Priority Setting Partnership, known as PROTECT PSP (Priorities for Future Research on Reducing and Stopping Psychiatric Medicines). This initiative aimed to identify the top 10 research priorities for stopping psychiatric medications.
The James Lind Alliance is a UK-based nonprofit that brings together patients, carers, and clinicians to identify and prioritize unanswered questions deemed most important. By doing so, it aims to encourage researchers and funders to focus on the issues that matter most to those who rely on the research in their daily lives.
In addition to our contributors, the partnership included Miriam Boland, Agnes Higgins, Claire Beecher, Wendy Burn, Anne Cody, Adele Framer, Toto Gronlund, Mark Horowitz, Sandra Jayacodi, Dolores Keating, David Kessler, Åsa Konradsson-Geuken, Luke Montagu, Ruth Smith, and Cathal Cadogan.
Surveys to establish these priorities were distributed through various networks, including ours. The resulting research was published in BMJ Open in November 2024. The study aimed to identify the top 10 research priorities for reducing and stopping psychiatric medications, reflecting the perspectives and unmet needs of three key stakeholder groups: individuals with lived experience, family members/carers/supporters, and healthcare professionals.
The top 10 list was developed through extensive engagement with these stakeholders and highlights significant uncertainties and gaps in the existing evidence base that future research should address.
These are the top 10 priorities, ranked in order:
- What is the most effective way to safely reduce and stop psychiatric medication in terms of tapering approach, rate of taper and duration of taper?
What individual service user characteristics (eg, age, gender, pregnancy, other medical conditions/diseases) and drug characteristics (eg, medication type, duration of treatment, use of other medication) determine these? - What are the most effective ways to provide support to individuals who are reducing and stopping psychiatric medication? These may include, but are not limited to, family/peer support, educational support, financial support, psychological support, and healthcare support.
- What are the best ways to educate current and future healthcare professionals about reducing and stopping psychiatric medication in terms of the tapering process, associated risks/difficulties, withdrawal symptoms and supporting shared decision- making? What is the impact of education on clinical practice?
- What are the views and experiences of individuals who have reduced/stopped psychiatric medication or are currently reducing/stopping psychiatric medication on the tapering process and accessing tapering support?
- What are the views and experiences of service users, family members/carers and healthcare professionals around shared decision- making in relation to starting and stopping psychiatric medication? This includes informed consent. How can the process of implementing shared decision- making be improved when starting and stopping psychiatric medication? What factors influence this process?
- What are the positive and negative long- term consequences of reducing and stopping psychiatric medication on an individual’s physical and mental health status? For individuals who experience negative consequences, what are the best ways to manage these difficulties? Negative consequences may include withdrawal symptoms, relapse and protracted withdrawal syndromes.
- What are the perspectives of key stakeholders on the professional, ethical and legal responsibilities of healthcare professionals and/or the pharmaceutical industry in relation to reducing and stopping psychiatric medication? Stakeholders include service users, family members/carers and healthcare professionals. What are the best ways to enact these responsibilities?
- Which factors influence the prevalence, duration and severity of withdrawal effects that appear during or after reducing and stopping psychiatric medication? What is the best way to control these factors and reduce an individual’s risk of developing withdrawal effects or relapsing?
- How best can the withdrawal symptoms that appear during or after reducing and stopping psychiatric medication be identified and differentiated from other causes (eg, relapse/return of underlying condition, distress)?
- What are the barriers and enablers to reducing and stopping psychiatric medication? These may include, but are not limited to, the service user, the healthcare professional, family and society.
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Thank you so very much for this very important work!!
Thank you. I was put into a rapid withdrawal by a primary Dr. Of 28 or more yrs., I had been on Xanax ,later changed to Clonazepam and Morphine for 22yrs. Or more. Was seen by the head director of a major hospital after many attempts at other pain clinic options. I never once asked for these medications. And same with Benzos. Many ER visits. And when I was admitted and had all kinds of tests run. Endoscopy. I was told I would have to take Xanax. As I had no other choice. I got extremely upset. And said I would not take those bc of the addiction and being labeled a drug addict. The next day, they had to send in a psychiatrist who again said I have no choice. And that it was called, medically necessary. And I would not be labeled a drug addict. I finally agreed. I am 68 yrs. Old and never deviated in all those yrs. I live alone and have been divorced since 1999. My health conditions are, heritable connective tissue disease/EDS. Multiple chemical sensitivities (many drug reactions) since a child.and ER visits., Mast cell histamine disregrulaton, Severe IBS-D., Peripheral Neuropathy, Raynaurds syndrome, Fibromyalgia, Panic disorder,Oral mandibular manifestation, Myofacial pain, Carpal tunnel, Ostio arthritis, Osteoporosis, Orthostatic hypertension, Extensive Dysautonomia. Neck to lumbar. From serious almost fatal Truck accident at 5 yrs. Old and failed surgery at 40. Food allergies are soy,whey, dairy, casein, egg. My past primary care wanted me to try a medication called Clonidine. I asked what it was. He said it would help with my occasional Tics. And then said, don’t take your Clonazepam the same night though. I asked if it was the same. He said yes. So I did as he said. I went into a rapid withdrawal and went completely psychotic and didn’t even realize I was in a withdrawal. I ended up in my car driving around thinking people were trying to kill me, That was so dangerous to me and others. I even thought people could hear what was going on in my phone. So I broke it. Also afraid my bank acct. Would be hacked. So I changed the pin, and forgot what it was. So I couldn’t get any money out. After 3 days I ended up out of gas in a restaurant parking lot, lost. I never went in. I thought I was dying of Cancer by then. In so much pain. And afraid to get out of the car. No gas and no heat and freezing. In the morning, a manager showed up and I honked the horn till she came to the car. And asked her to call a ambulance, because I thought I was dying. She did and my car was left there with everything in it. In the E R they couldn’t find any info on me and ran lots of tests including a spinal Tap . Then because I was so psychotic they put me in a drug rehab. Oh my gosh! It was Hell and I was put through a second abrupt withdrawal from Morphine. And put on strong anti Psychotics and having serious side effects, a requiring another ER visit, when I almost died.( I wish I would have now) I kept trying to refuse them, and nobody would listen, and blasted me with all kinds of meds I have on my do not take list, bc of severe adverse reactions in the past. They finally stopped after 7 weeks of getting worse , but kept me on what they called a low dose of Quetipine 100mg. That I was still having problems with. But at least I snapped out of the horrible Psychotic hallucinations. Then I was labeled a substance abuser! ( I was no longer clinically necessary) And no longer a woman with a debilitating disease that nobody has heard of and is very painful in itself. When I saw the primary care dr. When I got out. He kept trying to deny that he prescribed a off label Clonidine to me until I told him I had the bottle at home with his name on it. He freaked out completely. And I got up and left in a really bad tremor and crying. Only to find out he had just recently had his license to prescribe taken away and was on charges of misdiagnosis of several patients and was responsible for the death of 2 amongst other discusting things. And now he is refusing to release my medical records to me. Which we know now he had not been keeping. Thank gosh I have them all from specialists and ERs. Etc. so I had to report him again over that. It’s been over 2 months I have been trying to get them. Since then I have had no medical care for the last 11 months. And can’t see a new primary care Dr. Until next. Mo. 3 months to be seen. And have so much anxiety about starting over with so much wrong. I never thought anything could cause so much intense pain and especially nerve pain in my life. And still feel like I have a rubber swim cap on my head squeezing me with chronic headaches, now have tardive disconagia from the months in recovery, and horrible Psychotic drugs that made me feel like I was on high doses of amphetamines.that is also very painful and also keeps me up. I can’t lay down without electric shocks running up my legs now. I can’t sit very long because of back and neck pain and I can’t walk very much because my legs go out. So I am up and down every 10 min. Day and night trying to stop this nightmare of pain. I’ve had 6 seizures since I have been home and refuse to ever go back to a emergency room and all kinds of other things I never experienced before. I now hope every night that one of these will finally end my suffering. I hope this never happens to anyone again. I am discussted with the medical profession and big pharma. I hope you make a difference and share my story. Also stop the off label use of anti Psychotics. These are soooo dangerous and have serious long term and permanent side effects. I tried to tell drs. For yrs. About the horrible side effects of anti depressants when I was 1st. diagnosed with Fibromyalgia. Nobody cared. Now 2 decades later they have a name for that as well. They were the 1st. Med I was ever on. And had severe insomnia and was tried on many. I stopped them slowly and can’t help but wonder if that was the beginning of sleep disturbance for me. Anyway I can’t hold this phone and type anymore. Thank you again for being there. I hope you reach the ones who need to hear this.
I love #8, with an additional element. What is the best way to reduce an individual’s risk of developing withdrawal effects and/or effectively addressing withdrawal effects before they cause drastic deterioration of health, well being and quality of life?
For me that’s what it’s all about, reducing the severity and duration of withdrawal.
My email adresse
Sorry, I have not managed to leave my email adresse
We have an experience which could be useful ( or interesting) to researches in the area of Enzo dependency. It can hopefully safe many years of suffering to somebody. So unusual case ( from the point of view of our pharmacologist, that many doctors had missed ” the point” and had damaged extensively the health of my husband. Nobody knows here ( Switzerland) where to restore it.
I would like to share some points with your ” working group”. And i would like to know where can we go to restore my husband after many ” not-clinical-crazy-trials” by ignorant doctors.
Best wishes
Melanie Davis REST Team Leader also took part in the study.