I have lived experience with my daughter who has struggled with psychosis since the age of 14. The antipsychotic medications she takes have had limited success in keeping her symptom free. The voices she hears have prevented her from maintaining a job for any length of time. She is now 31 years of age and has a brilliant mind and a caring heart. I fear we will lose her to this cruel mental illness as we did our youngest son.
To me, open dialogue is a fresh approach and a model that encourages open doors rather than closed. How many times when I asked questions was I refused information because of “confidentiality”. Now looking back, it seemed counterintuitive for the primary care giver to not be involved in my daughters care. Open Dialogue makes sense.
I have applied to join a Mental Health and Addiction organization locally and will be meeting the board of directors February 18th. Where would I find the latest information and research on this model for me to present?
Opening a dialogue
Dear Hakala
Thank you for sharing.
As for your question, the latest research related to outcomes in Western Lappland is presented in the paper: “The family-oriented open dialogue approach in the treatment of first-episode psychosis: Nineteen-year outcomes”; https://pubmed.ncbi.nlm.nih.gov/30253321/.
To provide general information about the approach, I suggest this open access paper: https://medschool.ucsd.edu/som/psychiatry/research/open-dialogue/Documents/keyelementsv1.109022014.pdf.
I wish you and your daughter all the best!
Raffaella
Thank you Raffaella,
I appreciate your quick response and valuable information on Open Dialogue.
Helen
Dear Hakala,
Where are you located?
I am in Lausanne, Switzerland, but also very connected to Spain (Madrid and Barcelona). I am on the board of Mad in America, so maybe we can also get referrals through there. Medication is a very important topic to address, as you surely know.
If you are in a country that has not organized its Mental Health Services around OD, it is not easy to find, but if we know where you are, maybe we can refer you to an organization, group, professional.
Your daughter is lucky to have you fighting by her side! I wish you success and not to lose hope. I am sure she can come through.
Warmly,
Claudia (JAEC Fountaion/ claudia@jaecfoundation.org)
Good Morning Claudia,
Thank you for responding.
Medication has had a key role in my daughter’s life since her diagnosis in her teenage years. I agree medication is a very important topic. There is a clinic here that she attended with support for first episode psychosis until she reached the age of 18. She has remained in the care of a psychiatrist locally since that time. Our Mental Health and Addiction services have long waiting lists where I live. As far as I am aware, OD is not practiced here in Thunder Bay, Ontario, Canada. The approach of involving the family and friends in Mental Health Services organized around OD makes sense to me as a person with many years of lived experience. Thank you for your kind wishes. I will never give up hope for her and others who share the same struggle. I plan to keep researching OD and hopefully find someone to lead the way.
Have a wonderful day,
Helen
Hello Helen,
I have thought long and hard before replying to you. I have been involved professionally and personally with mental health for some years, first as the CEO of a major UK NHS mental health organisation and later as a regional director of care standards for the Government. Personally I have had to support my wife who has suffered from psychotic episodes for 20 years. During this time I have been actively involved in seeking to promote better practice and methods in dealing with mental health issues. I was accepted to join the Open Dialogue introductory programme in 2016 in the UK and found it a revelation in its approach. I was staggered that it was not widely accepted and utilised in Finland when the evidence was so clear that it could help acute psychosis. Later, living in Austria where I met my wife, I also discovered this same reluctance to explore the process of Open Dialogue and wondered why such resistance. It seemed so incongruous and frankly dismissive.
As the CEO brought in to turn around a failing yet internationally acclaimed NHS service in London I also faced similar attitudes from the clinical professionals and wondered why. The core issue that held their performance back was the absence of trust, even between colleagues, and this I sense is an issue you may well face in your quest. It took a while to change things in London, but it became impossible in Austria because I was merely a relative and as such had no ‘authority’ to speak, even if what I said was to help them. I discovered that in Austria there was such enmity between the various clinical disciplines that trust was absent and this had a massive impact on their ability to improve the quality of care. My wife was on high doses of a drug that had been superseded years ago because of the side effects. In the brief moments when I could speak with the Professor he refused to listen and dismissed me as if I were unimportant in the care of my wife. In the end and following the acquaint with Open Dialogue I helped my wife reduce her drug use and she became more confident and engaged with years between episodes. It quickly became clear that her family were the primary cause of her recurring states and were compounded by the psychologist being friends with her father and ignoring the potential for the impact their relationship had on her states. The journey to recovery seemed possible but only of we could persuade her professor to explore open dialogue as a means to facilitate improvement in her wider environment. In the end I was unable to do this and she has regressed and now seems lost to me, sustained by drugs and a very limited and solitary existence. I say all this because I firmly believe in the benefit of open dialogue, even in chronic psychosis, because it is the only process than engages everyone in the social circle of the sufferer in order to deal with what is after all a social issue.
So, my advice is to tread very carefully and not to push too hard until they (the professionals) have familiarised themselves with the process of Open Dialogue. The challenge for them is to let go of some degree of control as everyone begins to discover the challenge of words and their different meanings which we all assume to be common. The benefit in dealing with psychosis via OD is that when the meaning is shared and common to all progress can be made as the sufferer is better understood. The more traditional and entrenched the professionals are in their practice, the more resistance you will uncover. If the professional organisation isn’t one where trust amongst each other is high, it will be a struggle. Psychosis is not a personal issue, though that is how it presents, it is a social issue that a dedicated team in Finland have achieved astonishing results with. If there is any way I can help do get in touch. Best wishes Rex
Thank you so much for sharing your thoughts. You understand. You truly understand. I will gather my thoughts and respond later.
Helen
Helen, worth having a look at this paper if you haven’t seen it already: https://bmjopen.bmj.com/content/bmjopen/7/9/e017680.
Regards Rex
Hello HHakala,
I live south of you in the MIdwest of the States. For the last 13 years I have walked a healing journey with my wife. She hears voices, too, and we have experienced nearly anything you can imagine, minus anything drug related: ‘psychosis’, flashbacks, comatose states, severe anxiety, etc, etc. We were fortunate to figure out our way outside the mental health system using attachment concepts among other things. It was only recently that I found out about Open Dialogue and wished I’d had access to something like that for our own journey so we wouldn’t have to have started from scratch.
Let me encourage you to understand there are so many, many things you can do as your daughter’s primary attachment figure that will help her heal. If you have interest, I tried to condense our experiences into a 30-page quick-reference guide that is directly aimed for family and significant others. I hope it doesn’t come off as too, self-promoting, but I wish I’d had this information when we first started our journey. You can download it from the link I provided.
All the best,
Scott
Before You Call for Help
Thanks for taking the time to respond.
I know there have been courses on OD in Canada. That is already hopeful. Maybe you can research and find someone working along these lines.
Wishing you all the best,
Warmyl,
Claudia.
c
Thank you again Rex for your openness and willingness to share your experience in mental health, from personal and professional perspectives. There is comfort knowing others have shared a similar journey. I do not have a working background nor training in mental health however, I have 20 years of first hand experience as a mother of two children whose lives were interrupted by psychosis. I have sat with my daughter for long periods in an emergency department while she was experiencing a psychotic break. I have long wondered what the long term consequences of antipsychotic medications will be? Who will be her advocate when I am no longer able? There are no simple answers. In Canada, only 1 out of 5 children who need mental health services receives them (Canadian Mental Health Association) Accessibility to timely mental healthcare has long waiting lists and they are about to grow longer. CMHA reported “–Seven out of 10 Ontarian’s (69 per cent) believe the province is headed for a “serious mental health crisis” as it emerges from this pandemic and nearly eight out of 10 (77 per cent) say more mental health support will be necessary to help society.” When I first read about the OD model of care, what stood out was the immediate attention given to the patient. Also, a recovery process that engages everyone in the “circle of care” resonated. Educating and including the family and the social circle makes so much sense. Could reluctance to adopt OD be financial? Or is it the lack of will to try something different? Systems are slow to change.
Recently, I have applied to volunteer on the board of a local community organization whose mission is to provide individualized, recovery-oriented support and housing for people who experience mental health or addiction challenges. My daughter has been on a waiting list for their services for over a year. My hope is to introduce OD as a new approach to consider, explore and possibly adopt. If you have resources you would recommend and think as useful, I would be very grateful.
Once again, thank you for reaching out to me. When we choose hope, anything is possible. Helen
Thank you!
Hello Helen,
I suppose the one aspect we need to acknowledge is the philosophical basis for scientific thinking. I know this seems strange but it does offer insight when you realise that the development of science is based on phenomenological philosophy, if it doesn’t exist in a rational observable way it isn’t of interest. An opposing philosophical view is that of Cosmologists who consider events within the context of the universe and allow the experienced reality for consideration. Medicine and associated fields of interest are in the primary viewpoint and this is under challenge by the more recent developments in understanding form quantum reality. Reducing fear is the key to progress in any field of scientific thought.
Scott has also written to you about this issue and his experience with mental health services, and I am in agreement with his viewpoint. I am afraid to say that patience is the key issue here for all those who seek change. Those in power and that have power do not want to surrender any of it unless they are sure they can retain ‘control’. This applies to all but the most enlightened organisations and there are so very few of them about. I say this because your intention of joining an organisation with a view to introducing OD needs to be seen as a longish term proposition. What determines the speed you can influence them is the degree of trust you can create so that they will feel they can trust you. Overt evangelism will not work, we need to be more subtle. If you are willing to invest the time necessary to build the necessary degree of trust then it will be an enormous benefit. Too quick and it will not only fail but build up further resistance to any other change. It is worth remembering that dialogue is at the core of the process and Canada had achieved the largest dialogue event worldwide when it invited comment for its education programme years ago. Do check out Harrison Owens books Open Space Technology and Expanding the now for utilising dialogue in meeting challenges. Helen do drop me a mail to rex@simptr.com and we can explore more options. Best wishes, Rex