Messages

Hannah, this is awesome and I am so very glad for you. Stories like yours are the reason I advocate for us to healthcare professionals and institutions. Imagine how things would have been if you'd had a clinician who knew about, understood and had experienced medical trauma way back when.

There is so much more science to each of us than even we know sometimes and as we all explore this terrible fate of CPTSD and what it does to us mentally and physically, hopefully we can shine a light on the impact and losses we experience so we have access to the care we need and deserve.

I hope you are on a good path that will help relieve a lot of what you've been dealing with!!      

    What BB asked.  If they do suffer from CPTSD it may be you can navigate this together.

someday i may have to drag a guy off a barstool and bring him home w/ me - there are things i can't do myself, after all!

You go girl! I say drag a guy off a barstool and drag him on home

There have been some issues with the site recently that should be fixed now. Just in case, however, if you don't want to lose a post you may want to write if offline and then post it, especially long ones.

Please let me know if you encounter any glitches (l.herod@yahoo.ca) and I will get back in touch with SquareSpace right away to get things fixed.

Kizzie

Ah San, I feel you. I wouldn't have said I was deprived before I realized in recovery that while I had a roof over my head, three meals a day, clothing, etc., the "necessities" of life as people common refer to these were not all there was. What I did NOT have was the kind of nurturing, care, warmth, safety, sense of worth, every human being needs to thrive. These things were neglected in my life and as a result like you I know now how deprived I was of the necessities of love, appreciation, worth, belonging... 

I remember telling a T a long time ago I had a memory of standing outside the house where we lived and feeling like I was safer outside than inside. It always stuck with me that feeling and it was only years, decades really that I understood what it was all about. Alongside the anger and tension in my family, there was a coldness, a lack of something profound, deprivation.

There are a lot of lovely things you and I can give ourselves now and I'm down with that. I don't want to wait anymore for it to come to me, I can bring it for myself and I hope you do too. 

Just my thoughts PT, but I think we are (or need to be) in the driver's seat when it comes to therapy. If you feel like you want/need to speak up/look for another therapist then absolutely do so. There are so many different therapeutic approaches for CPTSD that we need to find what works for us.


   

The forum is sorted but one thing I'd recommend is to write and keep a copy of your posts, long ones in particular, offline. We haven't had a ton of technical issues at OOTS but they do happen from time to time unfortunately and it's a real pain to lose them I know.

First of all, congrats on the illustration course, it sounds like it will be fun and may help with the career you are entertaining. 

I'm so sorry to hear about the state of your mental health system Teddy Bear. It's about what I thought sadly.
I know you have limited funds but I am curious if there is private care available which is not so politically fraught and something you could consider down the line if/when you are able to afford it? 

I hope at least being here is of some help. I have found (and as many other members have said) that being with survivors where you can speak freely and everyone gets it and is supportive can make a real difference in recovery.

 

I'm glad to hear you are recovering Teddy Bear, it sounds like you went through quite a bad period. Are you recovering on your own or do you have a therapist?

I'd personally be interested to hear about the mental health system where you live as Russia still remains a mystery in many ways. It seems odd that there is an acceptance of the ICD-10 but not the ICD-11 which does have CPTSD as a diagnosis. Is this something you could ask for from a therapist/the health system (i.e., that you be evaluated for CPTSD according to the ICD-11)? And may I ask what is "F20"?

Also, there is a guide we developed as part of a project a team of us completed recently which is for healthcare professionals and does cover complex relational trauma and complex PTSD, as well as trauma informed care, etc. It's here - https://www.outofthestorm.website/healthcare-project. It's only in English though so that may be prohibitive. If there is a T who does speak English though, it likely would be quite helpful.

I do hope you are able to carve out a career in the near future, it sounds like you have some ideas about what you'd like to do 

Unfortunately LadyBugBee is no longer coming to the forum but I think this is a good thread to carry on with given CPTSD affects our work life.

This is slightly different from what LBB posted about but working takes a lot out of us especially if we're dysregulated and trying to hold it together while at work. I remember coming home some days and just collapsing because of the effort of appearing like everything was "normal" with me. It would take cocooning all evening and overnight just to be able to slog through another day until I was able to regulate again. I am retired now and glad to not be dealing with work related stress and CPTSD symptoms I must say.

I think there are countries where CPTSD is classed as a disability now - if you happen to be in a location where this is available it would be interesting to hear from you and how it all works. 

Hi and a warm welcome to Out of the Storm Pelican Town! 

I am a fellow Canadian and share a lot of the interests you do. I love animals but sadly I am allergic - to cats especially - so watch a lot of cute animal videos.

One thing I remember Pete Walker (author, therapist and fellow survivor) saying about CPTSD is that we think and feel at quite a deep level which can be both a blessing and a curse. I agree and really it makes sense because when you've faced what we've all faced how could we be shallow? We're very aware of how much harm people can inflict and how that feels. I've always seen it as a kind of an existential crisis that non-survivors don't face which makes it hard to relate to them, make small talk in social situations, etc.

I hope you will find the community fits you quite well, we do tend to get things many (most?) non-survivors don't. 

Hi LucasLu - Welcome to Out of the Storm. If I may I'd like to suggest that you make an introductory post here in the Introductions section? It would help members get an idea of your trauma history so we know why you developed Complex PTSD. It also gives us some important context for what is happening now in the present and why.

Thanks,

Kizzie
Forum Administrator

LucasLu do you have a reference for this so we know where you got the original, compare your version to it and see how you've updated it?

Tks,

Kizzie, Forum Administrator 

Wow indeed! Tks for this Armee 

[It Was My Decision": How Adults Make Sense of withdrawing from psychiatric drugs after experiencing adverse effects, a qualitative online focus group study]

Below please find a request for participants for a qualitative study investigating patients experiences of withdrawing from psychiatric drugs from which they suffered adverse effects. Please note the views expressed in this study are those of the researcher and the institution. 

Kizzie

It Was My Decision": How Adults Make Sense of withdrawing from psychiatric drugs after
experiencing adverse effects, a qualitative online focus group study

 

Introduction

The aim of the study is to seek out the experiences of adults that have withdrawn from psychiatric drugs after experiencing adverse effects. The study is being conducted by Dawn Davis at Glasgow Caledonian University and Dr Martha Canfield. The study is being carried out by Dawn Davis as a part of an educational course for the award of DPsych Counselling Psychology.Before you decide whether or not to take part, it is important for you to understand what participation in the study will involve. Please take time to read the following information carefully and discuss it with others if you wish. Please contact us at the address below if you would like more information. 

Why is this study important?

Many people experience psychological distress, and mental health difficulties. There are many ways of offering support and alleviating this. Psychiatric drugs, prescribed by psychiatrists or GPs is one way, and many people find this helpful. However, many people experience adverse effects, and there is now an increasing view that prescribed drugs should not be the first line of treatment. In fact, there are psychiatrists that have found that psychiatric drugs can cause more harm than good.

Indeed, due to an increase in information on withdrawing from psychiatric drugs, the importance of a tapered and controlled withdraw is now more understood.  However, not all prescribers or the public are aware of this.  For instance, calls for a national dedicated support helpline for withdrawing was refused.  Due to this, there is a need for research to support a societal, legislative and health understanding of people who take prescribed psychiatric drugs own experiences.  Hence, this study proposes to explore adults' experiences of those that choose to withdraw from their prescribed psychiatric drugs because of these adverse effects, using online focus groups. 

This research has the potential to provide new insights into the experiences of people prescribed psychiatric drugs.  The findings will add to the current knowledge.  The findings can help advocate for those that choose to withdraw from their prescription drugs, because of adverse effects.  It is hoped the findings of the study can be shared with the public, legislators and mental health professionals to raise awareness of the experiences of people who take prescribed psychiatric drugs.

What will I have to do if I take part?

The research will be conducted through using small 'focus groups' of 4-6 people, who will discuss their experiences in an online meeting lasting up to 60 minutes.  If you are interested in taking part, you will be invited to give consent by completing a consent form which will be emailed to you. Those that require more information are invited to email that request to the researcher, who will respond by email, or with a telephone call at your convenience, depending on your preference.  If interested in taking part, you will be asked to sign a consent form through an emailed link. 

Once consent has been completed you will be offered a choice of focus group times and will need to send an email back confirming your preference.  We will be using the Zoom online application. You do not need to download any software; we will provide a link in the email invite, and you click to join the group opting to use through your internet browser.
 
The session will be audio recorded only using Zoom and the data will be saved directly onto a university restricted folder. We will ask you to not to share any identifying information about yourself during the session, such as your address, or full name. You are welcome to use a synonym name if you wish, or we can change your name for you.
 
The researcher will have some prompt questions, but it is expected that the discussion will be led by those taking part. A debrief email will be sent to you after the focus group. You are also invited to contact the researcher afterwards if you have any queries, thoughts, or concerns.
 
Do I have to take part?

No. You decide whether or not you want to take part. You can leave the focus group session at any time. If you wish to have your data withdrawn from the study, you can request it without giving a reason by contacting Dawn Davis, if this is done before the session is transcribed and anonymised, normally within two weeks after the focus group. Withdrawing from the study will not affect your medical care or legal rights.  If you decide to withdraw ahead of that deadline, any of your data contributions will be removed permanently from any transcript, within a two to three days and will not be used in any of the study. 

What are the possible risks with taking part?

All studies involve some level of risk and inconvenience. The possible risks involved with this study are data breaches, possible emotional discomfort and/or psychological distress from the discussion. To mitigate these risks, we ask only those that are not currently in any crisis (such as intense anxiety and/or severe mood instability) and are psychologically and physically resourced to take part, and ethical guidelines for psychologists conducting research are adhered to throughout, including how your personal data and the research data and handled. We would ask, if you decide to take part, that you have access to a safe, secure, and private location which can be used for the duration of the focus group. We will also make a group agreement at the start to make sure that everyone is giving their consent.

If you have any concerns about the possible risks of taking part in this research you can contact the researcher Dawn Davis, Ddavis301@caledonian.ac.uk or the research supervisor Dr Martha Canfield, martha.canfield@gcu.ac.uk. Your data will be held securely and confidentially unless there is a situation where the researcher needs to escalate any information to a relevant authority to protect you or another from harm. 

What are the possible benefits of taking part?

We can't promise the study will help you personally. However, some might find participating in focus groups rewarding, especially sharing similar experiences with others. You could benefit from having your experiences (which may not have been validated by others within the process of prescription and withdrawal of medication) heard, validated and taken note of. The results might offer insights that can be used to support the rights of those people who take prescribed psychiatric drugs. For instance, the findings could support calls for the national withdrawal helpline. The findings could also support a call for alternatives to psychiatric drugs as the first line of mental health treatment. Your experience could help raise awareness among mental health professionals in how the prescription of psychiatric drugs are experienced leading to improved care and support for these current people who take prescribed psychiatric drugs. It could prompt health professionals to consider these experiences before prescribing psychiatric drugs to new services users.  The findings could demonstrate to the health professional the importance of empowering a patient to make an informed decision about their treatment. Findings from your participant could also raise awareness in those working therapeutically with clients, supporting clients that are having adverse drug effects and who are considering withdrawing from psychiatric drugs. 

Your participation could help inform/empower other people who access mental health services. The findings could help raise awareness of having an informed choice ahead of taking prescription psychiatric drugs.  The findings could support those who are currently experiencing adverse effects and could highlight they are not alone if choosing to withdraw from them.  The findings could support a better understanding of the decision-making process when considering withdrawal.  Your participant could highlight some of the negative effects of prescribed psychiatric drugs and support the call for advocacy to support more informed decision making.

What happens when the study stops?

Written reports of the study findings will be available from the researcher Ddavis301@caledonian.ac.uk and the GCU library. 

What if there is a problem?

If you are concerned about your participation in the study and would like to speak with someone, please contact GCU HLS Ethical psychology committee, hlsethicspswah@gcu.ac.uk. 

What will happen to the information given during the study?

This section will explain what happens to the information you give during the study. The information collected will be anonymised. All those taking part will be asked not to use their real names to keep personal identifying information, such as home address, confidential during the group discussions.  A recording of group discussion will be made.  It will be transcribed and anonymised. The transcriptions and the recording of the focus group will be deleted once the transcription is completed. All information will be entered into a designated GCU SharePoint site, accessed only by the research team (Dawn Davis and Dr Martha Canfield). Transcribed data may be included in the write up in the form of quotations but will not be identifiable. 

The study will comply with the Data Protection Act (2018) and the General Data Protection Regulation (GDPR). The data controller is Glasgow Caledonian University. Information is being processed on the basis of Article 6(1)(e) of the General Data Protection Regulation and to perform a task carried out in the public interest. Enquiries specifically relating to data protection should be made to the University's Data Protection officer (DPO). The DPO can be contacted by email: dataprotection@gcu.ac.uk. If you are unhappy with the response from the University, you have the right to lodge a complaint with the Information Commissioner's Office (ICO). The ICO can be contacted by email: casework@ico.org.uk.

GDPR also gives study participants the right to ask for their personal data to be erased. If you would like us to stop using your personal data, then you can contact add your contact and ask for your personal data to be erased. However, it will only be possible to erase data that has not been anonymised and/or published. Further information about your rights can be found at: https://www.gcu.ac.uk/dataprotection/rights/.

Who is organising and funding the study?

This study is being organised by Glasgow Caledonian University and is not funded as it is part of the requirements for DPsych Counselling Psychology. 

What will happen to the results of the study?

The study results will be available to a range of people including e.g. the public, mental health services users, academics and mental health professionals. It will not be possible to identify any individual participant from these reports or publications. 

Who has reviewed the study?

All studies involving human participants carried out at Glasgow Caledonian University are reviewed by an ethics committee. The role of the ethics committee is the protect the safety, rights, wellbeing, and dignity of study participants. This study was reviewed by the School of Health and Life Sciences psychology departmental committee and given ethical approval.

What happens next?

If you are interested in participating and would like to know more then please contact Dawn Davis,
Ddavis301@caledonian.ac.uk.
 
How do I make contact with the study team?
Dawn Davis (research student), Ddavis301@caledonian.ac.uk Or Martha Canfield (research supervisor), Martha.canfield@gcu.ac.uk

Thank you for taking the time to read this information.