Author Topic: Paper, Mar/22: Surviving benzodiazepines: patient and clinician perspectives  (Read 445 times)

[Buddie]

The full title of this American paper is: “Surviving benzodiazepines: A patient’s and clinician’s perspectives”

The authors are Carrie Silvernail, RN (benzodiazepine survivor and spouse of a founding member of the Alliance for Benzodiazepine Best Practices) and Steven Wright, MD (the now-retired medical director for the Alliance).

Abstract
Although benzodiazepines have been used for 6 decades, many questions remain unanswered by research. The lived experiences of those adversely affected long term can provide insights into how these agents might be more thoughtfully prescribed. Here, perspectives of one such experience encompassing benzodiazepine initiation, ongoing use with adverse consequences and difficult discontinuation are presented through the eyes of an affected individual and a clinician. This experience highlights the importance of limited initiation and duration of use (2–4 weeks) as well as a supported, slow tapering process led by patients. Because researched evidence about deprescribing benzodiazepines is insufficient and because individual experiences vary so widely, it is the patient’s expertise—that of her or his lived experience—that should assume a primary role in determining the course and pace of discontinuing these medications.

Full Paper
https://link.springer.com/article/10.1007/s12325-022-02055-y

Citation
Silvernail, C.M., Wright, S.L. Surviving Benzodiazepines: A Patient’s and Clinician’s Perspectives. Adv Ther (2022). https://doi.org/10.1007/s12325-022-02055-y
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Thank you [...], Carries story breaks my heart but she's been such a strong advocate, we're lucky to have her.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

I found this article to be of sufficient interest and quality to add it to my bookmark list.

This article presents the perspectives of only one patient and her support team. Every patient who is prescribed benzodiazepines presents with their individual expectations, experiences and opinions.

Not included in this article are cases where the perspectives of patients and their support teams that conclude continuing the prescribed long-term use of a benzodiazepine may be in the best interest of the patients. I believe those patents' and their support teams' perspectives are as valid as Carrie's, the patient whose case is discussed in this article. Additionally I believe that those patients' and their support teams' expectations, experiences and opinions should not be diminished or dismissed by others who are not knowledgeable about those patients' cases. 

Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

I found this article to be of sufficient interest and quality to add it to my bookmark list.

This article presents the perspectives of only one patient and her support team. Every patient who is prescribed benzodiazepines presents with their individual expectations, experiences and opinions.

Not included in this article are cases where the perspectives of patients and their support teams that conclude continuing the prescribed long-term use of a benzodiazepine may be in the best interest of the patients. I believe those patents' and their support teams' perspectives are as valid as Carrie's, the patient whose case is discussed in this article. Additionally I believe that those patients' and their support teams' expectations, experiences and opinions should not be diminished or dismissed by others who are not knowledgeable about those patients' cases.

[...],

I don't think you have to worry about anyone outside of a benzodiazepine withdrawal support forum dismissing these patients experiences or opinions, these patients are in the majority, they are who the doctors, policy makers and pharmaceutical companies listen to.  Its the people who react badly to these medications who are dismissed, sidelined and labeled, in other words, our members.  If you find our language distressing I suggest you join a forum for those who are happy taking the drug.

Hopefully we can get back on topic now since the information [...] has linked to is validating to those who suffer this affliction.

[...]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

[...]: Thank you for preventing this thread from being derailed by a personal agenda that is contrary to the mission of our forum.

I share your hope that our members will find the paper both informative and validating.  I also hope the paper will inform the beliefs and practices of the clinicians who read it. 
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Thank you for the paper, [...]. I think many of our members will find it helpful.

[...]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

You’re most welcome, [...].

There are multiple ‘pearls of wisdom’ in this piece.  For example, I wish all members struggling to discontinue their benzodiazepine had a prescriber who said, “First, I believe you. Second, how can I best support you?” after hearing their story.

I’m also impressed by the quality and recency of the references (as you know, some clinicians dismiss Ashton’s work because it is ‘old’). For example:

Horowitz MA, Taylor D. How to reduce and stop psychiatric medication. Eur Neuropsychopharmacol. 2022;55:4–7.

Wright. S. Benzodiazepine withdrawal: clinical aspects. In: Peppin J, Raffa R, Pergolizzi J, Wright S, editors. The benzodiazepines crisis: the ramifications of an overused drug class. New York: Oxford University Press; 2020.
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

This is a wonderful article by a patient who is a BB member and a Dr who believed a whole bunch of patients with the same story.

This work will change the industry!
May take some time, but it will change it.

Way to go Carrie, I’ve never conversed with her, but everyone on this Board should be proud that she is so open about her story!!

Thank you Liberas

[...]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

Thank you for the positive and uplifting comments, [...].  I agree wholeheartedly with you about Carrie!
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.

[Buddie]

I PM'd with Carrie often several years ago when we were both acutely suffering with PFD. I knew that she had founded an NPO to address benzo issues, but I lost track of her once we both got a little better. I'm so glad that she's thriving in her new role. Thanks again, [...].

[...]
Suggestions, opinions and/or advice provided by the author of this post should not be regarded as medical advice; nor should it substitute for professional medical care. Consult your doctor before making any changes to your medication. Please read our Community Policy Documents board for further information.