Together with Mental health and Wellbeing

Report on the EU High-Level Conference “Together with Mental health and Wellbeing” Brussels, 13 June 2008

Let me begin by stating that this is in no way meant to be a comprehensive report as the amount of information available on the day was enormous and as the day was organised, I would need to be able to bi locate in order to attend each section of the programme. So what I am about to give here are the impressions that I took from the conference some thoughts in and around it and some opinion as to change.

In the opening remarks, if I could say in the general terms of it, that the priorities seem to be to use public health policy to attempt to identify best practice and while there was a lot of conversation or a lot of discussion around genetics and research there was very little as to any aspects of the emotional or spiritual side of mental health. There was a focus on delivery and how the European pact could do this.

We heard discussions as to discriminations in the work place, access to treatment, and medical research. In all of these presentations and throughout the day itself, in both the welcoming remarks, opening speeches, address by the guest of honour, the key note presentations, and the ministerial panels, we heard references to the part that politicians, academic research, the medical profession, the voluntary organisations and, unfortunately, as a sort of polite addition at the end of each presentation “and of course we must consult with the users and carers”. This appeared to me to be an afterthought, as a sort of sop to those of us who are the true experts in this field to keep us in our place at the bottom of the pile.

I do apologise if this offends some of you who may read this, but it was certainly how it appeared to me and after I made a number of interventions during the day emphasising the point it was confirmed to me that that was also the impression of many other members of the audience.

I raise this next point with great trepidation as I know it is going to be enormously controversial, but I do hope that those of you who read this will see that I make the point through concern and love and in the hope of gaining clarity around the whole issue of mental health as it pertains to so called “mental illness”.

As I listened to HRH Princess Esmeralda of Belgium make her beautiful presentation on behalf of those who live with and care for those with autism. We listened to Alzheimer’s described as a mental sickness by Mr Martinez the Vice President of the European Parliament. I wondered that as a person who lives with the normality of madness every day of my life was I actually in the right place, and at the right conference. Speaker after speaker spoke of Alzheimer’s and Dementia, and I have to ask the question as these three physical illnesses mentioned above, are identifiable both in life and post mortem as brain diseases and I live with emotional distress, which I chose to call madness, and I can state that there is no medical or physical evidence of either manic depression, depression, schizophrenia or any other so called “mental illness” to be found in my brain either in life or post mortem.

There are non specific signs and I can quote you if necessary, scientific evidence to prove that post mortem the long term effects of psychotropic drugs muddy the waters as to whether this is concrete evidence of so called “mental illness”.

So therefore, in the interest of both lobby groups, those who are lobbing for improved conditions for autism and for our elderly population should all be included in the pact that is addressing mental health and the question that needs to be asked is it in its essence addressing mental health and well being or is it addressing madness emotional distress or so called “mental illness”.

I certainly came away from the conference with no clarity on this issue.

It is appropriate to mention here that I was not invited to this conference by the organizers, in fact as a user expert I did not know it was on until my own MEP Kathy Sinnott fought for a place for me and three others. May I take this opportunity to publically thank her for her tireless efforts to raise the voice of the voiceless.

It was absolutely empowering to listen to the former Prime Minister of Norway address the conference with his presentation entitled “A Personal Experience – from a Government Prospective”. His outlining of how proper support not only allowed him to continue to function within the Government as the Prime Minister but also how his courage in standing up and stating that he was living with depression wiped out the stigma that secrecy leads to.

I found it quite distressing to later listen to Mr Paul Stoffels, Company Group Chairman, Global Research and Development, Pharmaceuticals Johnson & Johnson describe me as a person with a disease. He has neither the authority, nor the proof to do so without challenge.
In the year I was locked up in a mental institution, in the 10 years that I was taking pharmaceutical drugs for so called “mental illness”, when it was proposed to administer electric shock treatment to me, when I survived suicide, in all of that time I had never been given or asked to take as much as a blood test, an x ray or a scan to ascertain the so called chemical imbalance in my brain that would prove that I have this “so called disease”. There is no test to prove the theory that I have “so called mental illness”. Let me repeat that, there is no test!

Yet, companies like Johnson & Johnson perpetuate the disease theory to further their market share of the multi billion dollar pharmaceutical industry that surrounds mental health. I have no issue with the benefits of some drugs and their short term use, but common sense tells me that for science to evolve from theory, to quantifiable science, it needs to develop a test that proves the theory, we have no test, none exists and Mr Stoffels closing and triumphant remark that good health equals good business, as I said in my intervention, needs a reality check because in the case of the pharmaceutical industry bad health equals better business.

The afternoon session on depression and suicide, chaired by our Irish Minister for Equality, Disability, and Mental Health. Ireland, John Moloney TD. It was again distressing to listen to Kelly L Posner Phd, Professor of Psychiatry, University of Columbia, USA call on the forthcoming EU pact to take on board as a matter of urgency the need to MASS SCREEN our children so that we can have early diagnosis and early drug intervention. Is she proposing that we identify difference and uniqueness, those things that history has proven develop into creativity and art, and to cure us all into robotic sameness?

To listen to her unchallenged statements stating that the increase in suicide was due to the fact that people were NOT taking their medications. Again, the other side of this argument needs to be quantified and the research proving the opposite to be true i.e. that the medications themselves are a major cause of suicide needs to find a voice and a place within this forthcoming pact. I did make an intervention on this matter but Professor Posner had approximately 15 minutes to make her presentation and my intervention was limited to one minute. I would appeal for balance to be taken into consideration.

We heard statements telling us that we had a suicide every 9 minutes in Europe. We heard of the urgent and compelling need to address this whole issue of “so called mental illness”. There are more and more of us out there who are the true experts on how to survive and thrive and be proud of madness and understand the gifts that it gives to us. We are the community within your community that give you art, music, drama, poetry and you lock us out of society and bury us under ignorance, prejudice and stigma.