Who is the expert on the BIPOLAR Patient Recovery Action/Plan? = Is it the Professional or the Patient?

01 January, 2013

Dear All,

SINCERELY HOPE this may serve as a discussion prompting or a brain storming session for people affected by Bipolar Mood Disorders, family and friends (4.5% of world population is affected by BMD, World Health Organisation, 2003). For everybody’s benefit, I feel need to show my cards and credentials here, already said in a previous posting “I’ll play straight bat” and have no reason to change like a true front row forward that takes the shortest way between A & B.

I’ve been a consumer/patient/sufferer/client (all are very valid terms) except: BIPOLAR! because I am not “the illness”, my personality is not sick, my mood is affected and this may cause at times some strange or affected behaviour). Let it be known, I cringe when sombody says: “I am Bipolar”………….

Have been a “consumer” of mental health services for 25 years and a Consumer Advocate, albeit I experienced 3 different stages: 1) During my first 8 years 1988/1996 was completely ignorant of what I had, experiencing ups and downs calling on personal tougher attitude to life. 2) Was diagnosed in 1996 and for another 8 years medicated but going around like the proverbial yo-yo thinking that it was another tough scrum and that will beat it with my rugby background and tough mentality. 3) In 2004 saw Prof. Gordon Parker at the Black Dog Institute (Mood Disorders Unit, Prince of Wales Hospital) and here is where my attitude took a 180 degree turn for the better. I started studying papers, books on psychiatry, psychology and never stopped since.

Consumer advocates are those that choose to speak in public and advocate for the mentally ill) for the last 10 years and have an extensive background in elite sport (Triple Rugby Union International) with a strong emphasis in “teamwork” (Scrummaging).

Should you feel none the wiser, please visit: www.theartofscrummaging.com or http://www.toporodriguez.com to research my diverse activities. I used to run the BIPOLAR Education Foundation www.bipolar-edu.org  (now closed up in May 2013 due to lack of funds and funding)

For quite some time psychiatry has been very strong on applying an “Evidence Based Medicine” strategy. This is of course dictated by the professionals and their peers (i.e. peer review papers). Also one of psychiatry’s best alleys has always been: philosophy which most of the time utilizes subjective (hence not scientific) deductions to derive to its conclusions, sometimes correct and others times not so.

Most of those developments are very subjective and come from the same professionals. The need to source experiences, knowledge and expertise should be shared between both sides of the counter (each one in its own dish). You may have heard before of “Narrative Based Medicine”, this concept is well encapsulated and explained by Patrick Bracken and Philip Thomas in their book “Postpsychiatry, mental health in a postmodern world”, Oxford 2005.

It is my opinion that when a patient is given time, consideration and respect, their internal healing forces and resilience will kick in. Conversely, if the patient is stigmatized, ignored and lied to you don’t need to be Einstein to guess the likely outcomes.

A social-psychological component I think it’s worth mentioning, is that in this over-competitive world many people and professionals in trying to defend their territories and professions go to extremes reaching zealotry levels, extreme selfishness and self-centered behaviour (after all it’s only human) forgetting that the patient is the “raison d’être”.

Therefore, a more moderate and pluralistic approach (that generally comes at mature ages) needs to be adopted, yet active and dynamic that embraces teamwork wholeheartedly.

Therefore, Who is the expert on the recovery action for Bipolar Disorders patients? Is it the professional or the patient?

I’d like to add two more questions to it:

Is the treatment and recovery algorithm in accordance to the patient’s requirements?  and…

Does it cover all the influential areas and contributing factors?

At this juncture I’d like to introduce a not-so-new concept I have learnt from one of the most eminent and respected worldwide psychiatrist from Sydney, Professor Gordon Parker, which is the need to enforce a more “Pluralistic Strategy/Method”. This is akin to a wide lenses observation and approach, as against a blanket cover (one size fits all).

Disclaimer: Professor Parker is not endorsing or supporting my views albeit he may or may not share them, as I have learnt a lot from him. I’m alone in this crusade and take full responsibility for my writings.

Mental illnesses have a very varied and irregular spectrum of contributing factors (originators). I will narrow my comments to bipolar disorders which is the area I am fully conversant and confident with. The above mentioned factors are: genetic, social, psychological, pregnancy, environmental and even the biological damage caused by the same illness bringing up other conditions or side effects with it (i.e. anosognosia, allostatic load, etc.)

I believe we need to go right to the top of the psychiatric tree and shake up the Bipolar Disorders’ treatment believes. Some entrenched practices are clearly not beneficial (medication and DSM need a major ethical revolution and divorcement from Big-pharma; otherwise the Recovery Movement would not be so vocal). I challenge the “weighing” of medication inside the total formula by saying: it is important but not exclusively. Many other additional items/areas of attention exist in a similar non-exclusive vein.

There are no less than 25 areas for attention with possible supplementary “solutions and strategies” to adopt in the form of Personalised Wellbeing Plans (PWP). This may contribute to the betterment and management of the mental illness condition with just about the same weighing or more than the medications. In turn these strategies will help the psychiatrists in dealing with the illness and their patients. We need to revert the 19th century model of “Doctor please fix me” to “Doctor what can we do together to regain control on my health”.

Therefore, academia, scientists and consumers need to come up with a “new formula or algorithm” which will be unique to each individual (accepting all variances). Definitely NOT a blanket cover! We must admit there is always the time constrained urgency to standarise and uniform treatments in the name of the pernicious “cost-efficiency” but this must not be done with human beings.

PERSONALISED WELL BEING PLANS (PWP’s)

The order of the below items has adegree of important however it may differ from person to person, please be your own judge (trial and error seeem to be one of Bipolar patient’s best friends (doctors use it all the time!)

1) Articulate and Share problems, conditions, experiences (open up – first up!)

2) Consult with professionals regularly (adhere to medications if prescribed to start with)

3) General Education (own) + Psycho-education (with professionals)

4) Strict and regular sleeping regime (very precious, LACK OF SLEEP COULD KILL)

5) Establish a regular well balanced diet (food, drinks, everything that goes through your          mouth)

6) Regular Exercises (must be pleasant, endorphins generator, No pain/No Gain is a LIE)

7) Meditation (establish stress reduction or management strategies to control brain activity and un-necessary stimulation)

8) Regular Mindfulness practices (just think of MINDLESSLY and do the opposite)

9) Cognitive Beheavioural Therapy + Psychotherapy (full attention to language and              self- expression. Positive thinking vs. Negative thinking)

10) Omega3 Fish oil supplements (regular intake)

11) Time Management (more efficiency/less wastage, TIME only travels in one direction:     IT GOES and never comes back.

12) Monitoring Mood Variations constantly (being the boss of your own body and reactions is extremely important)

13) Social Life Management (outings, events, venues: “restrict when you must” and increase when you want to!)

14) Secure PAID WORK, if unable do volunteer work instead (society recognise and appreciate us fully when we are producing and earning our way!)

15) Control as much as possible your work and home environment (not easy, but must try)

16) Control Luminic Over-exposure/stimulation of the brain (TV, VDU’s, and LED’s)

17) Reduce Acoustic Pollution (bad music, machinery, including bad arguments)

18) Life Plan / Goals Setting (short, medium and long terms)

19) Organise complementary and/or additional activities of your interest (creativity, hobbies, outings, etc.)

20) SHARES ALLOTMENT STRATEGY (A mental picture: Give out 49% shares on your “recovery business” (you know well who to) and retain 51% of them for yourself (you are the boss)

21) The above will earn you 100% responsibility for your own actions and behaviour

22) Have a laugh at yourself, enjoy it because ALWAYS will be somebody else worse off than us, without counting the deceased……

23) Cultivate your Spirituality needs in whichever form they may come (for some people this is the religion bracket)

24) Companionship is vital whether human or animal

25) Exercise Self-determination

26) Exercise Self-belief

In conclusion, this is what I mean by a “pluralistic approach”, we must open up the umbrella of observation, diagnosis and of treatment

Thank you

Enrique TOPO Rodriguez

About toporod

Triple Rugby Union International (1977-1991) The ART of SCRUMMAGING - 2013 Gold Medal Winning Author - [IPPY] - 2014 Silver Medal Winner [eLit Awards] - Enthusiastic writer on Rugby and Bipolar Disorders - International Rugby Consultant and Public Speaker - www.expertrugbyconsultants.com
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