Wednesday, November 18, 2009

10th World Congress of WAPR/ a carers perspective

10th World Congress of World association of Psycho social rehabilitation(WAPR)

The 10th World congress of World Association for Psycho social rehabilitation was held in Bangalore from 12-15th November 2009. There were nearly 52 countries represented in the congress from all over globe. The theme of the congress was One world/ quest for integration. Even from developed countries the representation of Carers and consumers were almost nil. I found only one carer from Israel and one consumer each from Netherlands and USA apart from our own Anil Vartak from Pune. But WAPR is the only worldwide organisation which has members from carers, consumers apart from Psychiatrists,Psychologists,Psychiatric social workers and Psychiatric nurses. NGOs from India dominated the scene with their work and i found that mental health professionals from third world countries and even USA, Chinese experts appreciating the quality of India's work with meager resources and almost nil help from Indian Central/state governments. The African and Sri lankan delegates told me that this is something which can be replicated in their countries with meager resources. What impressed them most was the effort of Santosh of Maraiasadanam ( any mental health professional training has raised an orchestra and theatre group from abandoned wandering mentally ill. Meet the expert, Invited Symposia, Proposed Symposia, workshops,scientific and poster presentations dominated the conference. Sometimes one has to chose between two similar symposia on a topic on which I am interested and has to give the miss to one.While sometimes i found topics which are heavy are also held simultaneously and found to be boring by ordinary carer like me and so i spend time at the coffee stall.I always wondered why is it that human rights/ethical issues in administering ECT, modified ECT etc ( Biological Psychiatry) are discussed in these types of conferences in third world countries while ignoring human rights issues of Deep Brain simulation just because it may be administered by using anesthesia and is carried out in rich countries. ECT has helped many patients especially suffering from severe depression in India.There was this topic about changing the name of Schizophrenia as the name is stigmatizing. This name is NOT known to many in India except those 3000 odd psychiatrists and another 1000 other mental health professionals and also some carers who are educated in English.People in India call everyone affected by Mental illness who show abnormal behavior as PAGAL. In fact this term is used in derogatory term for anyone who doesn't show some basic common sense.Are we in India have to change this name? Britishers in India used to call all thosewho required Disability benefits in three broad terms. Lepers, Lunatics,Idiots and totally blind.No DSM IV, ICD 10 for them .They put the lunatics behind bar in prisons and gave them food and shelter and didn't allow them to wander the streets. Now due to a lobby of human rights lawyers these Lunatics ( now called Mentally ill) were released into streets of India without shelter and food. They had their so called Freedom and human rights lawyers got their medals but the lunatics roamed the streets with FREEDOM to beg and to be abused. WAPR must look at these issues with carers and consumers perspective instead of Human rights lawyers views.Russel D souza and Carlyle Perera, renowned disaster recovery experts of Australia gave their views and i found that RESILIENCE creation amongst the population who are prone to disaster prone areas in Bengal ,Orissa which frequently face cyclones and Assam which faces floods. Dr.Mushtaq A Marghoob from Srinagar University took the circuitous route of Earthquake in Kashmir and trauma to talk about conflict area trauma where innocent civilians are facing cross fire and suffer. India should be open about Trauma being faced by people living in areas like Kashmir,Manipur, Tripura where security forces and insurgents cause trauma to civil population. Soon we may have naxal affected areas facing Trauma.There was this debate for a proposition ""More mental hospitals not de-institutionalization is the need of LAMIC countries"". The debate was by eminent mental health professionalswho did not understand the need of the Families and consumers. We in India have not established a single new institution comparable to AIIMS of Delhi or NIMHANS OF Bangalore after 1950 and those mental health institutions which function have no adequate staff ,equipment, buildings etc. These were highlighted by NHRC study and NIMHANS study on various hospitals in India. Indian Psychiatric society or Indian Private psychiatric society could NOT succeed in convincing Government for more funds till the ERAWADY TRAGEDY in which 28 chained mentally ill persons perished in a fire. From 19 crores budget at the time of Erawady tragedy , today it has increased to nearly 1000 crores. But patients from northeast and Assam continue to pour into Bangalore for mental health care due to presence of NIMHANS braving enormous cost and distance. In spite of SUPREME COURT RULING in that case (W.P.(C) NO 334 OF 2001 and interim order dated 5th feb 2002, most of the provisions of that order remain unimplemented especially inclusion of MENTAL ILLNESS in the NATIONAL TRUST ACT 1998, establishment of more institutions like NIMHANS. Except the Home Minister of Karnataka who inaugurated the conference nobody in the Proposed symposia on legislation and human rights spoke about the changes being framed in India in the Acts involving Psycho social disability 1.The national trust act 1998 2. The Persons with disabilities act 1995 3.The Rehabilitation council act 1992.All the above acts and the ministry which is supposed to implement it SOCIAL JUSTICE MINISTRY of Central government and DISABILITY COMMISSIONER of state government were NOT REPRESENTED IN THIS CONFERENCE BY EVEN A SINGLE PERSON.
CLOZAPINE , a drug which evokes strong feelings from the Psychiatric community makes carers wonder about the so called study being conducted in various settings. Dr.Angelo Barbato presented a study in which he contrasted the benefits of various new age atypical medications like Quetiapine,Respiradone,Olanzapine with typical old age Haloperidol and concluded that there is no major benefit in prescribing the new age medications. What i found rather intriguing is that CLOZAPINE was not part of HIS study!! His reason for the exclusion is that it involves blood tests involved in the study though he admitted it is more effective. The doctor from NICE , UK who presided over the session even used the word "poison" to Clozapine!! But Prof Mansfield Mela and his team of 7 researchers from Canada presented a paper in which they opined Clozapine promotes employability,reduces offending among mentally disordered offenders.They also opined the effect of Clozapine is long lasting. For those who are interested in medicines and their prescription , please go to the following link for further information provided by NIMH. The study was conducted without involving patients who are suffering from Tardive dyskinesia while Clozapine was found to be very effective in treating TD which is major side effect of all anti/psychotics. My personal opinion after talking to some patients who take this drug is that it is very effective.Also the need for taking blood test to find total blood count decrease (which according to some scientists is common to ALL ANTI/PSYCHOTICS) is the major reason for its cost. Whether the decrease in blood count is common to ALL anti/psychotics and whether it is significantly more in clozapine or NOT should be studied in India so that this MYTH is cleared for the benefit of all consumers of the world. Prof Wolfgang Krahl from Germany is the only Psychiatrist who advocated for Inclusion of Clozapine in the W.H.O essential drugs list.

5 key findings from CATIE phases 1 and 2

  • Olanzapine was more effective than the four other antipsychotics (risperidone, quetiapine, ziprasidone, and perphenazine) in phase 1.2

  • Perphenazine—a first-generation antipsychotic—was as effective as risperidone, quetiapine and ziprasidone in phase 1.2

  • Neurocognitive function was no different whether patients were treated with perphenazine or SGAs, but adjunctive anticholinergic treatment worsened cognitive function.8

  • In phase 2, clozapine was more effective than other SGAs in patients who discontinued phase 1 because of inadequate efficacy.9

  • Antipsychotics differed in their adverse effect profiles, but no significant differences were observed between perphenazine and the SGAs in EPS rates or use of anticholinergic agents.2
This congress is being held in India is due to the singular effort of Dr.T.MURALI and his team consisting of Prof Mathew Verghese, Dr.Ravi Shankar Rao and Dr. Ajit Bhide. So personally I was disappointed to see that the next President is from Philippines while the honour should have gone to India's Dr.Murali. One cannot cover all articles by 300 odd Professionals.
Some of the snaps taken at the conference are below.I didnot know how to handle the Sony cyber shot which i purchased recently. Hope i take better snaps next time

1.Audience at my seminar including Susan Keter of Kenya
2. With delegates from SriLanka
3.A Delegate from Nepal, Prof Gayathri Ramaprasad from USA, Dr.Mrs.Mufti, a Dentist from Karachi Prof Khalid A Mufti of Pakistan PPS,captJohann
4.A volunteer and a Sanyasin from Divya Jyothi Jagrati Sansthan with Mrs.Joyce Shiromani of
Paripurnatha, Calcutta,Lifetime achievement awardee for Psycho scoial rehab, johann
5.Prof Michael G.Madianos of Greece,Mr. Eliahu ShAmir, of OZMA Israel,captainjohann


VLS said...

My cousin who has been suffering from unremitting symptoms of psychotis (despite treatment with other medicines) for the last 10 years has gained a new lease on life, with the Clozapine treatment advised by one of India's senir-most Psychiatrists Dr N Gopalakrishnan in Chennai. I totally endorse the positive press for Clozapine. Her blood count also has not changed at all.

captainjohann said...

Thanks VLS for sharing the truth.There are very few who have the courage to tell the truth.