Sunday, 28 February 2016

"Thank God for Clozapine": @Davidiris1 GP Dr Shiers #PsychosisScotland 26Feb16: I don't agree

I don't agree that we should thank God for Clozapine.  

Dr David Shiers, retired GP from England, was interviewed by Prof Andrew Gumley at the Psychosis Scotland conference, 26 February 2016 in the Assembly Hall, Edinburgh.  Prof Gumley should have interviewed me on stage to give an alternative viewpoint, to bring balance.

I speak as an unwaged carer and mother of 3 sons who have experienced psychoses and coercive psychiatric treatment, and who has another family member on Clozapine.  A toxic, disabling drug which affects balance, blood levels and walking abilities. 

I am also a psychiatric survivor, having experienced psychoses and coercive psychiatric treatment in 1978, 1984 and 2002.  Making a full recovery by tapering the drugs under my own steam, against the advice of psychiatry.

I had to take my 3 sons into psychiatric settings and advocate for them.  At times they had suicidal thoughts.  At other times they were at great risk, given cocktails of 5 neuroleptics, subject to sub-human treatment in psychiatric settings.  My youngest son locked in a seclusion room of a locked ward, no toilet or water to drink, in the dark, broken hand, left unobserved for hours:

Scottish Sunday Express 5 October 2014
HOSPITAL HORRORS: Patient locked in cell with no toilet, food or water 


Tweets from Psychosis Scotland event, Dr Shiers and Prof Gumley:

Thursday, 25 February 2016

bridging the gap: looking forward to the time when we are all "peers" in mental health matters

I am wondering when the playing fields in Scotland's mental health world will be level and everyone involved, whether on the side of service provision or service receiving, in government or in society, will admit to experiencing mental health challenges and being at risk of "mental illness".  For I believe it could happen to any one us, a psychosis or a neurosis, a depression or a mania, although only some of us will end up in a psychiatry setting, with a diagnosis and drug treatment, voluntary or coercively, declared to be "without capacity". 

The peer support agenda which drew me in to sharing my "recovery" story in 2005 on the Scottish Recovery Network then updated in 2008 seemed to usher in a new way of working, level playing fields and recognition of the value of "lived experience".  I believed in the message that was being delivered because I had recovered, survived psychoses and psychiatric treatment in 3 different decades, by self management, and had helped other family members to do the same.  

However the reality was different to what I'd envisioned.  As a qualified and experienced professional, an "expert by experience/EbE", I expected that my skills would be welcome, just as they were in the world outside of mental health specific.  I was 55yrs old with a wide and varied background in community education, having set up projects, and had gained another postgrad award at Stirling University in Jun08.  Yet none of this seemed to count and I was expected to toe the line, jump through hoops as if a youngster who had just left school.  I called it hierarchical shenanigans at the time.  Straitjacketing.

This type of behaviour continued on in many of the groups I participated in as an EbE, including local Fife statutory mental health user groups, the DClinPsy groups at Edinburgh and Glasgow University, the SRN WRAP network, the VOX service user meetings, the mental health nurse training at both Dundee and Abertay Universities.  The Scottish Crisis and Acute Care Network steering group was better and the nurse managers really tried to involve me as an equal.  

But the psychiatrists on this group were problematic, had links to big pharma and it resulted in bullying behaviour by them towards me and the nurses.  During this time my son was being subject to psychiatric abuse in the locked seclusion room of Stratheden Hospital, Feb12.  I had to pick up the pieces while campaigning for justice.  No doubt our whistleblowing and my campaigning had an effect on my involvement in local and national groups.  My speaking out about the abuse would have raised the emotions of others taking part.  Couldn't be helped.  I had to speak out.  That was and is a priority.  Human rights abuses in psychiatric settings have to be exposed and stopped.

To be fair to the DClinPsy groups, the beginning of my involvement on these coincided with the psychiatric abuse of my son in the Stratheden IPCU.  Emotions were running high.  The clinpsy academics did try to include me but the group dynamics were problematic, in each area.  Other agendas and differences of opinion.  I'd had enough by the end of 2014.  It felt like treading water and going nowhere fast.  The law of diminishing returns.  Too long an apprentice when I should have been teaching, mentoring and sharing my experience.  Which I'd been doing in community settings for decades.

This year I am looking forward to being involved in more positive pursuits, promoting alternative ways of working with people in psychoses, safe havens and therapeutic communities.  Writing and campaigning so as to level the playing fields and bridge the gap between care givers and care receivers, professionals and volunteers, experts by experience/peers which could be any one of us, depending on circumstances.  I will continue to be a questioning and critical voice, a truth seeker, whether others like it or not because I live with myself 24/7, not others.

the lonely road of psychiatric survivor activism in Scotland; the disempowerment

Something happened the other day, causing pain, which has brought home the inequalities and isolation of the mental health activism and campaigning role which has been my lot since 2012 when my son was subject to psychiatric abuse.  And I was blamed for causing psychological harm, in an adult protection investigation report.  

It stretches further back to January 2008 when I got fully involved in Scotland's mental health world by setting up Peer Support Fife and Chrys Muirhead Associates website, updating my story on the Scottish Recovery Network website and committing myself to the movement for change, which I heard first at the December 2005 Glasgow Peer Support Conference, organised by SRN and others.

Peer Support Fife website

In the four years up to February 2012 I ran a number of events through PS Fife and delivered many sessions on WRAP and Peer Support, to individuals and organisations, while providing caring support to my son.  I also got involved in various mental health groups locally and nationally, from the carer and survivor perspective, including the clinical psychology training (DClinPsy) at both Edinburgh and Glasgow universities.  

Firstly in 2009 to a meeting facilitated by Prof Andrew Gumley and Dr Ross White in the Mental Health and Wellbeing Unit, Administration Building, Gartnavel Royal Hospital, Glasgow.  Then in 2011 to Stirling University for a national event, following which I joined both DClinPsy user/carer groups, until my position on the groups became untenable.  I believe this was mainly due to my unbelief in the mental illness mantra and having a psychiatric survivor perspective.  Being in opposition to biological psychiatry.

I recovered from "mental illness" because I didn't believe in the psychiatric diagnosis of schizoaffective disorder which had been written in my "notes" 2002.  Tapered the drugs under my own steam.  Helped family members do the same after episodes of psychosis and psychiatric treatment.  For nearly 50 years I have been helping my family to survive and recover from mental illness and psychiatric system coercion and abuse.  

On 1 January this year I submitted an application, including a 15 page CV, to Glasgow University, for the post of Research Fellow/Project Manager EMPOWER, Chief Investigator Prof Gumley, and was not invited to interview, the reason given that I did not meet the "essential" criteria for the post.  Although I was told that my CV was "impressive".  

I heard via Facebook late yesterday evening that Simon Bradstreet, SRN Director, got the job.  I would have appreciated getting the news by other means than social networks.  In a personal Email would have been respectful, considering the work I do, and have done, to inform, educate and empower people like me who are "experts by experience" and others, including academics in their ivory towers.  Unpaid work which has often left me out of pocket.

I shall recover from the feelings of pain and disempowerment, of having to soldier on without due recompense or recognition.  I will get over it. 

Selection of pages from my CV for EMPOWER post, Glasgow University:

Thursday, 18 February 2016

Staying Well After Psychosis: avoiding the research evidence

I had sent an Email to the authors of Staying Well After Psychosis, Professors Gumley and Schwannauer, saying:

"I'm sceptical of research, tend to think there is a lot of bias and agenda, particularly among academics who have a point to prove.  I prefer action research undertaken by independent folk although this is hard to find.  It requires the researchers to be truth seekers, I think, rather than paid pipers.  So I will probably skim your research bits and only stop to look if something catches my eye."

Then it dawned on me that the research in their 2006 book would be out-of-date anyway.  Phew.  That's fine then.  Makes it a lot easier to read, for me.

Starting on Chapter One and this paragraph caught my eye on page 6:

I think this may still be true today, 10 years later: "CBT studies seem to have been concerned with symptomatic improvement ... psychiatric ratings of outcome ... less concerned with emotional recovery, quality of life, social functioning and staying well.". 


'What's really wrong with cognitive behavioral therapy for psychosis?' Neil Thomas, 27 March 2015, Frontiers in Psychology

"However, what does CBTp actually offer? CBTp mainly provides a framework for adapting existing cognitive and behavioral methods to psychosis, thereby primarily being suited to delivery by practitioners with advanced levels of cognitive-behavioral skill, typically clinical psychologists. Indeed, the competency framework described for CBTp (Roth and Pilling, 2013) indicates a high and exclusive bar for delivery. In practice, the CBTp intervention we have validated as evidence-based practice within RCTs outlines a treatment protocol requiring such high prerequisite skill that it can only be used by a small—and expensive—segment of the mental health workforce."

 Concluding paragraph:

Sunday, 14 February 2016

“Schizophrenia” does not exist #BMJ: Prof Stephen M Lawrie's "trite assertion" response & my reply

“Schizophrenia” does not exist: Prof Jim van Os, BMJ 2Feb16

12Feb16: the response from Prof Stephen Lawrie, Head of Psychiatry, University of Edinburgh Kennedy Tower, Royal Edinburgh Hospital, Edinburgh EH10 5HF; @lawrie_s 

My response to Prof Lawrie's piece submitted on BMJ website 14 February 2015:

"Re: “Schizophrenia” does not exist and Prof Stephen M Lawrie's "trite assertion" response

As a mother who has survived, and made a full recovery from, 3 separate episodes of psychoses, two of them postpartum in 1978 and 1984, the other menopausal in 2002, and the subsequent coercive psychiatric drug treatment (for I resisted the antipsychotics, preferring talking therapy which wasn't available), I agree with Prof Jim van Os's Article and concluding paragraph:

"The best way to inform the public and provide patients with diagnoses, therefore, is to forget about “devastating” schizophrenia as the only category that matters and start doing justice to the broad and heterogeneous psychosis spectrum syndrome that really exists."

I was given the diagnosis of schizoaffective disorder in 2002 which, even after my recovery, remains in my notes like a label.  And I have family members who received the schizophrenia diagnosis/label.  Resulting in "family history of ..." being written in the notes of any of us who happened to be treated for psychosis in the same health board area of Scotland.   The schizophrenia and related diagnoses are very difficult to get erased from one's medical notes, regardless of recovery.  In my case I tapered the drug cocktail in 2003, of Risperidone, Venlafaxine and Lithium, under my own steam.   Stigma and discrimination, in my experience, are linked to the diagnoses and "family history of" assumptions. 

Dr Lawrie writes of genes and increased risks however it is my understanding that the gene research is not conclusive.  There are many ifs and buts.  Not least the fact that long-term psychoactive drug treatment can disable the person neurologically and systemically.  Parkinsonian side effects, problems with walking and balance, increased agitation and anxiety, loss of agency and ability to make decisions.  I know about these, in the short term, having experienced  the discomfort when having to take Chlorpromazine in the earlier treatment years and Risperidone later.  

I was only on antipsychotics for a year maximum, with all 3 psychosis episodes, as I did not feel that I had quality of life on the drugs, they made me feel zombie-like.  I know that other people may have different views and prefer medication.  However for those of us wanting alternative therapies for psychoses or altered mind states the psychiatric diagnoses can exclude us from receiving psychological interventions.  The psychiatrist may prefer using drugs, especially if they have links to pharmaceutical companies as consultants or "experts".  [And may receive payment from these drug companies, the amounts of which only their taxman will know, which is the phrase Prof Stephen Lawrie used at a conference on psychosis I attended where he was a speaker, in July 2014 Edinburgh .  I am wondering therefore if Dr Lawrie does have "competing interests"? edited out by BMJ]

I do not agree with Dr Stephen Lawrie's closing paragraph:

"Just because a word like schizophrenia is mis-used does not mean it should be abandoned; and replacing it with something else of unproven value is likely to do more harm than good.". 

Schizophrenia is more than a "word" to the people who bear the label and live with the stigma, also their family members.  It is a scapegoating term which has been used to separate some people from society, a form of alienation.  Why should it matter to Dr Lawrie that the term be changed?  Unless he has a lot invested in the matter.  For when it comes to "unproven value" then that could be said of all psychiatric diagnoses.  Which are only relevant at the time they are written down so as to "treat" a person/patient.  People recover from "schizophrenia" and in their recovery prove the diagnosis wrong.  What does cause "more harm than good" are the claims by psychiatry that the mind can be understood by science.  They are clutching at straws and in so doing demonstrate the bankruptcy of their claims and positioning."