WillySenior Contributor
Finally Found- A CBT-p Practitioner- Part 5a
This is my fifth and last post about my experiences with Cognitive Behavioral Therapy for Psychosis (CBT-p). I started this therapy in February this year (2022) and finished it at the end of 2022 after 20 sessions.
CBT-p is a collection of psychological techniques and practices that have been proven to be effective for helping people to manage psychotic or manic mental health problems such as schizophrenia and bipolar disorder. I was first diagnosed with schizophrenia more than 50 years ago. I have tried many different things over the years to try and heal/manage/alleviate this condition including a wide range of medications and therapies. Overall, there has been significant improvements during this time with some very long periods during which nothing much happened.
How well did it work?
In my opinion, better than expected.
At the start of each therapy session I completed a 10 question assessment of the previous week.
Below is the questionnaire form which gives a total score between 0 and 40. A score of 10 or below is considered good or normal whereas a score above 20 suggests that life has been a problem over the last week.
Below is a chart showing the results of all 20 tests over the 10 month period. The down sloping red “regression line”, a sort of average, shows an overall improvement in the average score during that period. The blue line fluctuated up and down showing the fairly typical cyclic nature of my psychotic/manic episodes. There was one moderate- to-severe episode around mid October 2022. I will say more about this experience later.
Finding a Therapist
It was not easy to find a therapist. One of my earliest posts on the SANE forum was in July 2019 when I wrote about these challenges.
CBT-p for schizophrenia and looking for CBT-p therapist
About six months later @JJMary , another sane forum member provided me with a valuable link to a CBT-p online Udemy course. https://www.udemy.com/. I signed up and did this course. It gave me some valuable insights and understanding about the sort of therapy that I would eventually embark on. The course was run by a guy called Ron Ungar who it turns out is considered to be something of an expert in this area.
After about three years of searching I finally found a therapist . This therapist appeared to have all the right credentials and experience but about 15 minutes into the first session, she got triggered, by something that I said. She probably, quite wisely, terminated the session but this was a somewhat traumatic experience for me. I was left feeling that it was “all my fault again”.
Shortly after, I found another therapist who works in the public sector and sees a few private clients one day a week. After a telephone discussion we decided to “give it a go”. This relationship has fortunately been successful.
My current understanding is that this type of therapy is unavailable from the public sector in Australia except perhaps as part of an occasional research program. It is also not easy to access in the private sector although from my own experiences it is obviously possible.
I also know that therapy doesn’t work for everybody in fact, from what I read, it is apparently not much more effective than medication. I have used the services of psychologist in the past. Most, but not all of them were a waste of time and money as were many other “alternative” things that I tried. Why this seemed to work for me this time is hard to say. Perhaps it was because I went into this with my eyes open about what to expect and what I was hoping to achieve.
Perhaps I just got lucky this time.
Cost
After medicare rebates, my out of pocket cost were approximately $100 per session or a nominal total out of pocket cost of about $2000 for the entire program. Due to special Covid provisions, I became entitled to additional rebates so my entire out of pocket cost for the program was about $1250.
Therapeutic Technique
CBT-p is something of a generic term for a number of advanced cognitive based therapies that are generally referred to as “third wave” CBT techniques. At last count I had identified 9 of these systems developed independently by various individuals and groups. Two of these in common use around the world are Dialectical Behavior Therapy (DBT) and Acceptance and Commitment Therapy (ACT).
The method my therapist used was ACT however it is apparently normal practice to use techniques from different methods and we finished up using some DBT techniques. The use of DBT techniques was based on what I regarded as my own needs and interest. One particular concept, the idea of rational “shared reality” contrasting with emotional “unshared reality” and the need to balance these two very different faculties of mind to create what DBT refers to as the “wise mind” became an important concept for me. You don’t need lots of techniques. The therapist, guided by client feedback attempts to find ones that are a good fit. As the therapeutic process evolved I became more involved as a co-driver of this process.
I believe that it is the therapist more than the technique that is important. The client must also be willing to put in the considerable amount of work involved.
One of the things I learned from the Udemy course was the importance of the therapeutic relationship. It is vital for the therapist to see psychotic experiences as a normal and natural part of human behaviour. The intensity and frequency of the experience can vary significantly as can the outcome or behaviour that the experience may generate. If a psychiatrist or therapist is not completely “at home” with this idea, not only is the intervention likely to be unsuccessful but it can result in significantly increased damage to an already damaged individual.
Many of us have had the experience of a mental health expert who doesn’t listen to what you are saying or who just dismisses or ignores you or even worse blames you for not getting better. These are definitely the sort of therapist’s we don’t want to be dealing with.
Trauma based therapy
Despite having having experienced metal illness all my adult life I was quite unaware of the trauma aspect of mental health until I started this therapy. It has opened up a whole new world of possibilities for me. It has also explained why years of effort put into practices like meditation and mindfulness did very little if anything to improve my mental health.
My therapist pretty much ignored anything to do with diagnosis although we did talk about symptoms such as voices quite a bit in the early stages. In the context of trauma based therapy, diagnosis doesn't really make much sense. My diagnosis however was given to me many years ago and has been carried around for a long time as a rather heavy and unwanted burden. I can't just "drop it" because someone else thinks I should or feels offended by it. If nothing else, medical resources including funding are still dependant on it. No diagnosis means no help with money.
As I read and explored concepts about trauma I began to realise that this is just one more complex subject that the sound bite cowboys have hijacked and used to spread all sorts of misleading information about. All to frequently, people seem to take on board this misinformation as fact. I believe that this can easily result in substandard outcomes as well as wasted effort and resources.
Medication
I have not used any psychiatric medication since starting this therapy 10 months ago (touch wood).
For the last 20 years or so I have been using anti-psychotic medication on an “as needed” basis. This involved monitoring my prodromal psychotic symptoms and ramping up the dose as symptoms developed. I then ramped the dose down again after the episode had passed. This approach was worked out with the help of a senior psychiatrist at the Alfred Hospital in Melbourne. It worked reasonably well provided I started taking medication when needed and didn’t put it off hoping things would improve.
Unfortunately the Victorian mental health people are not at all convinced about this approach. They have challenged its the validity claiming that I needed to be on Long Term Injectable anti-psychotic medication. Without it they claim I am a danger to myself and the community. Given the problem I have with side affects, their attitude was obviously unwelcome. The are going to be even less impressed if they ever find out that I am no longer using any medication at all.
At the start of the therapy the therapist said she would get me right off psychiatric medication for good. I was pretty sceptical but it is starting to look like she could be right. I will still keep them handy just in case and use them if necessary. The very last thing I need these days is to be hospitalised with another psychotic episode.
Where to from here
On the 31st Dec 2021, police and Victorian mental health workers forced their way into my home on the false claim that I was a danger to myself and the public. They tried to take me into custody and place me in a geriatric home for the insane. Their efforts failed for a number of reasons including the fact that they had not bothered to obtain the necessary legal paperwork. A year later, despite multiple complaints and investigations, it is still unclear why this incident took place. Different government departments are pointing the finger at each other but overall, there has been a total avoidance of responsibility.
During these investigations, I became aware that both involuntary confinement and involuntary treatment for mental health are extremely common practice in Australia. What happened to me appears to be pretty much an everyday experience for people diagnosed with schizophrenia or bipolar who come to the attention of the state mental health authorities for any reason. Furthermore, Victoria has one of the worst records for the use of involuntary treatment and practices anywhere in the world. These practices contravene the United Nations Convention on the Rights of Persons with Disabilities (CRPD to which Australia is a signatory.
Another important issue for me is the involuntary use of anti-psychotic medication for the control of psychosis and hyper-mania. This controversial practice has been justified for many years on the basis that these drugs correct a chemical imbalance in the brain which causes mental illness.
It is now known that these claims are completely untrue and that this type of treatment can significantly worsen mental and physical health in both the short and long term. This places the state governments of Australia as well as a number of international pharmaceutical companies and medical practitioners in a precarious legal situation. Ten’s of thousands of Australians have been subject to this sort of treatment. (Ref 1,2,3,4,5,6,7,8, 9,10)
As this rather amazing story unfolded, I became increasingly interested in trying to do something about the problem. A few months ago I decided to become a lived experience mental health and intellectual disability legal advocate. This will involve attending court and tribunals in various capacities.
I discussed all this at length with my therapist. She is supportive of what I am proposing to do and will continue to provide me with support, albeit less frequently in the capacity of vocational training and guidance for this new role.
Continued.... Part b
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