Wednesday, 10 December 2014 from 17:30 to 18:30 (GMT)

 

 

Schizophrenia Genetics: settling the score

Speaker: Professor Michael O’Donovan, MRC Centre for Psychiatric Genetics & Genomics

Chair: Professor Anthony David

Vote of Thanks: Professor Sir Robin Murray
Wednesday 10th December 2014

5.30 – 6.30pm

Wolfson Lecture Theatre

A reception will follow in Seminar Rooms 1 & 2 from 6.30 – 7.30pm

Biography

Professor of Psychiatric Genetics Michael O’Donovan studied both Physiology and Medicine at Glasgow University, Psychiatry in Paisley (Scotland) and Cardiff (Wales) and genetics in Cardiff and Boston (USA).
Clinically, Michael specialises in diagnosis and management of schizophrenia and psychosis.
Michael has published over 300 scientific papers into molecular genetic studies of psychotic disorders, as well as a range of other disorders including ADHD and Alzheimer’s disease.
Michael leads a large international schizophrenia research consortium and is also the Academic Psychiatry Lead for the Royal College of Psychiatrists in Wales.

It was good to go along to this event held at Institute of Psychiatry and I met up with a few others who have been affected. After the event you can speak to the professionals involved and I was keen to show Professor O’Donovan the leaflets relating to my website.   I mentioned how I as a mother wish the label of “paranoid schizophrenia treatment resistant to be lifted – a patient should never be labelled for life and I do not agree with this label at all and neither do I agree with the label of ADHD.   I am at the same time not dismissing that there are symptoms but these symptoms are being misdiagnosed.  I have already proven Elizabeth has a physical condition and I want something done about this inaccurate label as the longer time goes on now Eliozabeth is at home there are NO symptoms and that is not because of the chemical Clozapine it is because Elizabeth is happy at home for a start.   Of course I am well aware if she was to come off this chemical which I just cannot call a medication, there may be problems but any problems experienced would NOT be as a result of a condition for which a bio marker has never ever been found.   One of the people I know who attended told me of cases where someone had successfully come off drugs but went through the process of “madness” first and then with that out of their system they were simply able to get on with their lives like never before.  I think it is wrong to suppress someone’s emotions by way of drugging and I do not believe drtugs should be given to someone who is treatment resistant (poor or non metabolizer).

The treatment of Alzheimers patients is wrong too so I believe – here is the treatment of my father which led to him having a heart attack:

Asprin 75mg

Omepraole 20 mg

Movicol

Temazepam

Perindopil

Quinapril 25mg

Attenolol

Quetiapine

Diazepam

This is wrong to give all these drugs to an elderly man in his eighties. By the way I am forbidden to talk about my father’s case and that says it all.

 

ADHD:

There is only illusive evidence for such a “disease”, the ADHD lobby will quote hundreds of papers written and claim scientific foundation for their belief. The existence of inconclusive research projects based on faulty methodologies and apparently there is no scientific evidence – unethical and deceitful statements made by those calling themselves scientists.  Consensus is far from proof – it is in fact a poor substitute for a lack of evidence and science was never advanced by consensus.  Consensus is the product of belief and not evidence.  Science is about questioning and the philosophy of science is doxasticism. The methodology of science is empiricism. Doxasticsm is a virtue by which the searcher after truth aspires to it by applying doubt and avoiding dogmatism and scepticism.  Consensus has no part to play;  the virtue of doxasticism allows us in our search for the truth to accept results that do not fit in with our preconceived notions and to courageously accept that we may never find the truth.

Empiricism is about being able to measure the results of our experiments and much more importantly for them to be repeated and tested by other impartial observers.  It is not about believing that this rock weights fifty tons it is about devising a method that can measure it and one that others can measure our findings by.

The belief system employed by the ADHD lobby can never assimilate such a philosophy or such an empirical evidence analysis.  They speak in absolutes without substance.  They quote authority in forms of belief and consensus without qualitative or quantitative evidence – the language of dogma not science.   Behind the individuals who love to describe themselves in terms of consensus is the huge power of the multi-national pharmaceutical companies who make astronomical profits from peddling of such fabricated diseases.

On the day there is proper aetiology arrived at through empirical validated and repeatable scientific study, on the day when there is proper diagnostic formulation, not a value judgement based on consensus ADHD will exist as a disease.

The Weekend

Today I may meet up with former patients and take Elizabeth shopping.  I am having to wait in for a plumbing contractor to arrive first. Last night I went to a very nice works do in Barnes – have been ill for the past week with a cold that developed into a terrible cough but these things are unavoidable when you travel regularly on crowded public transport every day. There is a lot to sort out before Xmas and hope to get as much done as possible today as well as catch up with friends

 

 

Elizabeth has the diagnosis of PTSD yet the team like to stick with paranoid schizophrenia.  In a most recent report the word treatment resistant seems to be dropped yet the team continue to treat Elizabeth with a drug(Clozapine) which is for treatment resistant schizophrenia.  I  do not accept this label of Schizophrenia.    I do not believe there is such thing as this label and underneath this label for which no bio marker has ever been found that there are problems of a physical nature.  It is wrong that such a label be given when the treatment may be completely wrong for the true underlying condition and why should a patient be labelled for life.  I am now seeing at first hand how inaccurate information is in the files and Elizabeth and I are amazed –  how can a professional go by such files written by some who may have a grudge and get an accurate picture especially when families are excluded. This applies particularly so in cases where there is disagreement not only with the treatment concerned but with the label given.

Such a label “paranoid schizophrenia treatment resistant” can be most damaging and Elizabeth kind of gave up on life not surprisingly but I have spent hours and hours looking into matters and it is only when you thoroughly look at research papers and seek the professional opinions of those who are  up to date with knowledge and read the right books that the horrific truth is revealed.

HOW MANY ARE BEING MISDIAGNOSED WITH THE ABOVE CONDITION WRONGLY AND SUBJECT TO A LIFETIME OF DRUGGING.  NO HELP OR FACILITIES GIVEN FOR SOMEONE TO BE REDUCED OR COME OFF THESE DRUGS.  PHYSICAL HEALTH IS BEING OVERLOOKED IN FAVOUR OF LABELLING SOMEONE FOR LIFE AND DRUGGING THEM FOR LIFE.  WHAT A WASTE OF TAXPAYER’S MONEY AND THESE DRUGS CAN THEMSELVES CAUSE THE VERY SYMPTOMS THAT PSYCHIATRISTS STATE ARE ASSOCIATED WITH THE CONDITION OF PARANOID SCHIZOPHRENIA TREATMENT RESISTANT.

Coming off such drugs is of course dangerous but there is the knowledge and horrifically some have to be taken off in the most horrific manner but only when they develop something like a blood disorder for instance.   I think it is a very cruel system that labels someone for life with a fictitious label and it shows that the system is uncaring the way that patients are forced  to take drugs for conditions they may not even have and the law is on the side of these so called professionals.

Well I will always stick with “there is no such thing as paranoid Schizophrenia Treatment Resistant and Elizabeth has PTSD which is a condition backed by research that is overlooked by the team, many of whom do not even have medical qualifications and yet involve themselves with the pushing of chemicals.  Yet another thing wrong with this rotten outdated system.

 

Elevated adrenaline or cortisol may be evidence that someone is suffering PTSD (or under chronic stress) but are probably best seen as a result of the disorder, (or of a chronically stressful environment) not as causal factors for PTSD.

 

In some life circumstances, (eg combat soldier, refugee from warzone, living as a victim of child abuse or domestic violence) the symptoms we call PTSD are perhaps best viewed as functional adaptions to the environment. I’d suggest that there are some life circumstances in which you want to sleep lightly, be hyper-vigilant, suspicious of the motives of others, etc. It is only a disorder if these behaviours persist when you are no longer in that environment.

 

As I believe has been mentioned above, there is a polymorphism in the serotonin transporter gene (locus, SLC6A4 ; variant, serotonin 5-HTTLPR) which affects vulnerability to PTSD.

People with one or two short alleles of the transporter gene are more likely to develop symptoms of PTSD after exposure to traumatic life events than people with 2 long alleles of the gene. People with one or two of the short versions are also less responsive to CBT or to pharmaceutical treatment of PTSD than people with two long versions.

 

So, the short alleles of this gene are a biomarker for vulnerability to PTSD, but it is VERY important to stress that they are neither sufficient nor necessary to cause PTSD, (ie you need to be exposed to the right sort of stressors whether you possess the shorter alleles or not in order to develop PTSD; and people without the shorter variants may still develop such symptoms if they are subjected to sufficiently traumatic  life-stressors).

This is clearly a gene-environment reaction. Anyone can develop PTSD, but some of us are far more vulnerable.

 

Genes are potential, not destiny. We are all phenotypic expressions of our genetic potentials being unfolded within complex and fluid physical and social environments. Jared Diamond coined the phrase “nature via nurture” (as opposed to “nature versus nurture”) to describe this dynamic complexity.

Serotonin transporter poly-morphisms, social supports, and liability to PTSD ;

 

DOI: 10.1176/appi.ajp.2007.06122007

http://ajp.psychiatryonline.org/doi/abs/10.1176/appi.ajp.2007.06122007

 

Serotonin transporter poly-morphism and response to CBT;

http://dx.doi.org/10.1016/j.biopsych.2010.03.016

http://www.sciencedirect.com/science/article/pii/S0006322310002453

 

Adding to the importance of considering the environment are studies like this one;

 

<<< Stratified analyses indicated that the “s” allele of the 5-HTTLPR polymorphism was associated with decreased risk of PTSD in low-risk environments (low crime/unemployment rates) but increased risk of PTSD in high-risk environments. These results suggest that social environment modifies the effect of 5-HTTLPR genotype on PTSD risk. >>>

doi: 10.1093/aje/kwn397

 

http://aje.oxfordjournals.org/content/early/2009/02/19/aje.kwn397.full

 

Good concise discussion of short allele, PTSD, Panic Disorder, and response to pharmacological treatments, here;

http://www.psycheducation.org/mechanism/2OtherShortsEffects.htm#PTSD

 

2 x short allele, 1 x short allele, 2 x long allele and liability to depression and other problems;

http://www.psycheducation.org/mechanism/1MoralityorGenes.htm#sobo

 

Adults having functional (symptoms without apparent cellular alterations) and organic (observable cellular changes in target tissue) diseases also have childhood stressful histories. Patients with rheumatoid arthritis not only report chronically stressful adult histories (e.g. unhappy marriages or relationships, difficulties at work, or with children, etc.), but also present histories of difficulties in earlier interactions with their mothers and experiences of considerable chronic threat (Baker, 1982). In addition, rheumatoid arthritis patients report childhood histories that are characterized by emotional neglect and abuse (Walker et al., 1997a). Later adult joint swelling is associated with an increased sense of depression in response to difficulty managing interpersonal conflict as well as conflictual coping with flares (Zautra et al., 1994, 1999; Marcenaro et al., 1999). Higher stress levels in this patient population are associated with androgen-stimulated estradoil negative feedback and higher stress neurohormonal prolactin activity. Both hormones have been positively correlated with the rheumatoid arthritis patient’s sense of depression (Zautra et al., 1994). With disease progression (or just prior to disease expression) patients assess and conclude that they cannot garner control over and cope with aversive interpersonal life events. This sense of “giving up” appears to underlie the chronicity of their physical illness (Zauntra et al., 1999). The intensity of this sense of loss of control is also associated with the degree of disease flare reactivity to stress.

Patients with systemic lupus erthymatosis present histories of marked childhood emotional deprivation (Otto & Mackay, 1967). Just prior to symptom expression, patients emit a sense of helplessness and hopelessness, “I give up”, that relates to the SLE patient’s inability to cope with the effects of current and prior stress (Blumenfeld, 1978).
The majority of multiple sclerosis (MS) patients, like healthy controls, tend to portray their childhood home life and themselves as moderately to very happy and also as relaxed and taking things in stride, respectively (Warren et al., 1982). Despite these similarities MS patients rated that they experience more anxiety in response to current stressors. Upon further inquiry MS patients disclose disturbing memories relating to wartime combat, an unpredictable urban attack, a major automobile accident and minor injury, raising oneself at the age of twelve years, and persistent beatings by step-father, etc (p. 829). Numerous adult stressors precede the initial onset of MS symptoms (Warren et al., 1982). Despite MS patients more positive outlook on life, psychiatric assessment has revealed that MS patients differ from healthy subjects in the insecurity that drives their need to seek greater love, their use of rigid defense mechanisms, i.e. as denial and minimization, and difficulty at resolving inner conflicts due to poor coping skills. Many of these personality characteristics date back to early childhood and correlate positively with symptom severity (Diana et al., 1985).
Chronic stress also appears to play a more obvious role in functional diseases like fibromyalgia and irritable bowel disease. Fibromyalgia (Taylor et al., 1995) is condition that is associated with different types of pain and other symptoms, e.g. headaches, stiffness, backaches, abdominal cramps, fatigue, numbness, etc. with no apparent structural abnormality in the tissue. The extent of pain is measured by tender point counts. Fibromyalgia patients report (Imbierowicz & Egle, 2003) having had very poor emotional relationships with one or both parents, particularly fathers (McBeth et al., 1999), and rated low levels of emotional security. The parents of fibromyalgia patients have also been described as being emotionally neglectful, abusive, and as of being psychologically unavailable (Walker et al., 1997b) to their children. In addition fibromyalgia patients seem to have difficulties in talking about and expressing emotional difficulties with their own parents as well as affection in the course of their roles as marital partner and parent (Imbierowicz & Egle, 2003). Fibromyalgia patients report witnessing parental violence in their families of origin (Imbierowicz & Egle, 2003), family disruption (Goldberg et al., 1999), and as having experienced physical and sexual abuse themselves (Boisset-Pioro et al., 1995) or the unwanted touch of another (Taylor et al., 1995). Childhood maltreatment is highly correlated with both psychiatric distress as well as fibromyalgia symptom severity as measured by higher tender point counts (Walker et al., 1997b; McBeth t al., 1999). A far greater percentage of women having experienced wide areas of intense pain, are those same individuals who tend to report prior childhood (and/or adult) sexual abuse (Finestone et al., 2000). Patients in this group, especially those with histories of emotional trauma (Aaron et al., 1997), tend to seek health care and report the greatest number of family physician visits and number of surgical operations (Firestone et al., 2000). In response to their stressful histories, fibromyalgia patients present symptoms of a lifetime of depression, history of somatization, anxiety, hysteria, and psychasthenia (Ahles et al., 1984; Hudson et al., 1985; Burckhardt et al., 1993; Walker et al., 1997b) as well as deficits in emotional and social role functioning.
Irritable Bowel Syndrome (IBS) is a functional gastrointestinal disorder (with symptoms of abdominal pain, bloating, and changes in bowel patterns in the absence of cellular abnormalities) that also presents comorbity with fibromyalgia and vice versa (Veal et a., 1991; Canataroglu et al., 2001). IBS patients also bring their chronic emotional and visceral responses to their histories of childhood (and adult if appropriate) physical and sexual abuse (Walker et al., 1995), exposure to threat (Dill et al., 1997), psychological family disruption (Lowman et al., 1987) as well as emotional and verbal abuse (Talley et al., 1995) into their current emotional and physical experience. They are more likely to present chronic depression, generalized anxiety, and symptoms of somatization (Walker et al., 1995) than patients with symptoms of inflammatory bowel disease (IBD) or ulcerative colitis. IBS patients who had endured chronic threat throughout their lives and prior to symptom expression are less likely to respond positively to treatment’s effects (Bennett et al., 1998). In a group of symptomatic IBS patients, psychosocial stress was negatively correlated with recovery from post-infective symptoms. Rectal biopsy specimens showed increased chronic inflammatory cell counts when compared with remitted IBS patients despite recovery from active infection (Gwee et al., 1999). Those patients with both inflammatory bowel disease (IBD) and psychiatric diagnoses tend to present histories of adult victimization of physical and sexual abuses (Walker et al., 1996) and suffer significantly greater symptom distress than an IBD population without psychiatric diagnoses.
The literature suggests that there is some link between childhood histories of adversity, (i.e. emotional neglect, disruption, and trauma, as well as physical and sexual abuse) and adult populations having autoimmune disease. Histories of adversity elicit chronic persistent stress arousal (as the reader will see later in this web site) that have the capacity to underlie the later development of physical disease by chronically stimulating stress neurocircuitry, neurohormones, and proinflammatory cytokines. Stress induced inflammation is not easily extinguished in persistently and chronically stressful environments, especially during early childhood when the brain and central nervous system is undergoing a remarkable rate of growth. Neurohormonal mechanisms for negative feedback and anti-inflammatory immune markers to cool chronic arousal and inflammation provide strategies that only work on limited complementary inflammatory responses. The interaction of all these neurobiological components allow for the later expression of physical symptoms.
Future sections of this web site will demonstrate how chronic stress underlies the later genetic expression for psychiatric symptoms (e.g. depression, PTSD, anxiety, aggression associated with anti-social personality disorder, etc.) and organic and functional disease (e.g. rheumatoid arthritis, systemic lupus erythematosis, multiple sclerosis, chronic fatigue syndrome, polymyalgia rheumatica, as well as fibromyalgia and IBS). The later expression of adult symptoms is dependent on both one’s genetic predisposition and the degree and duration of chronic stress. The intensity of the stress response is more important to an individual’s neurobiological response than its nature. The interaction of both these variables will determine the nature of neuroendocrine and neuroimmune synthesis, release, and secretion to life stressors at any point in the life cycle.
References
Ahles TA, Yunus MB, Riley SD, Bradley JM, Masi AT (1984): Psychological factors associated with primary fibromyalgia syndrome.  Arthritis Rheum, 27(10): 1101-6.
Baker GH (1982): Life events before the onset of rheumatoid arthritis.  Psychother Psychosom, 38(1): 173-7.
Bennett EJ, Tennant CC, Piesse C, Badcock CA, Kellow JE (1998): Level of chronic life stress predicts clinical outcome in irritable bowel syndrome.  Gut, 43(2): 256-61.
Blumenfield M (1978): Psychological aspects of systemic lupus erythematosus.  Prim Care, 5(1): 15-71.
Boisset-Pioro MH, Esdaile JM, Fitzcharles MA (1995): Sexual and physical abuse in women with fibromyalgia syndrome.  Arthritis Rheum, 38(2): 235-41.
Burckhardt CS, Clark SR, Bennett RM (1993): Fibromyalgia and quality of life: a comparative analysis.  J Rheumatol, 20(3): 475-9.
Canataroglu A, Gumurdulu Y, Erdem A, Colakoglu S (2001): Prevalence of fibromyalgia in patients with irritable bowel syndrome.  Turk J Gastroenterol, 12(2): 141-44.
Diana R, Grosz A, Mancini E (1985): Personality aspects in multiple sclerosis.  Ital J Neurol Sci, 6(4): 415-23.
Dill B, Sibcy GA, Dill JE, Brende JO (1997): Abuse, threat, and irritable bowel syndrome: what is the connection?  Gastroenterol Nurs, 20(6): 211-5.
Finestone HM, Stenn P, Davis F, Stalker C, Fry R, Koumanis J (2000): Chronic pain and health care utilization in women with a history of childhood sexual abuse.  Child Abuse Negl, 24(4): 547-56.
Gwee KA, Leong YL, Graham C, McKendrick MW, Collins SM, Walter SJ, Underwood JE, Read NW (1999): The role of psychological and biological factors in postinfective gut dysfunction.  Gut, 44(3): 400-6.
Imbierowicz K & Egle UT (2003): Childhood adversities in patients with fibromyalgia and somotoform pain disorder.  Eur J Pain, 7(2): 113-9.
Lowman BC, Drossman DA, Cramer EM, McKee DC (1987): Recollection of childhood events in adults with irritable bowel syndrome.  J Clin Gastroenterol, 9(3): 324-30.
Marcenaro M, Prete C, Badini A, Sulli A, Magi E, Cutolo M (1999): Rheumatoid arthritis, personality, stress response style, and coping with illness. A preliminary survey.  Ann N Y Acad Sci, 876: 419-25.
McBeth J, Macfarlane GJ, Benjamin S, Morris S, Silman AJ (1999): The association between tender points, psychological distress, and adverse childhood experiences: a community-based study.  Arthritis Rheum, 42(7): 1397-404.
Talley NJ, Fett SL, Zinsmeister AR (1995): Self-reported abuse and gastrointestinal disease in outpatients: association with irritable bowel-type symptoms.  Am J Gastroenterol, 90(3): 366-71.
Veale D, Kavanagh G, Fielding JF, Fitzgerald O (1991): Primary fibromyalgia and the irritable bowel syndrome: different expressions of a common pathogenic process.  Br J Rheumatol, 30(3): 220-2.
Walker EA, Gelfand AN, Gelfand MD, Katon WJ (1995): Psychiatric diagnoses, sexual and physical victimization, and disability in patients with irritable bowel syndrome or inflammatory bowel disease.  Psychol Med, 25(6): 1259-67.
Walker EA, Gelfand MD, Gelfand AN, Creed F, Katon WJ (1996): The relationship of current psychiatric disorder to functional disability and distress in patients with inflammatory bowel disease.  Gen Hosp Psychiatry, 18(4): 220-9
Walker EA, Keegan D, Gardner G, Sullivan M, Katon WJ, Bernstein D (1997a): Psychosocial factors in fibromyalgia compared with rheumatoid arthritis: I. Psychiatric diagnosis and functional disability.  Psychosom Med, 59(6): 565-71.
Walker EA, Keegan D, Gardner G, Sullivan M, Bernstein D, Katon WJ (1997b): Psychosocial factors in fibromyalgia compared with rheumatoid arthritis: II. Sexual, physical, and emotional abuse and neglect.  Psychosom Med, 59(6): 572-7.
Wallace DJ (1987): The role of stress and trauma in rheumatoid arthritis and systemic lupus erythematosus.  Semin Arthritis Rheum, 16(3): 153-7.
Warren S, Greenhill S, Warren KG (1982): Emotional stress and the development of multiple sclerosis: case-control evidence of a relationship.  J Chronic Dis, 35(11): 821-31.
Zautra AJ, Burleson MH, Matt KS, Roth S, Burrows L (1994): Interspersonal stress, depression, and disease activity in rheumatoid arthritis and osteoarthritis patients.  Health Psychol, 13(2): 139-48.
Zautra AJ, Hamilton NA, Potter P, Smith B (1999): Field research on the relationship between stress and disease activity in rheumatoid arthritis.  Ann N Y Acad Sci, 876: 397-412.

I attended this international conference with Elizabeth at the Tavistock Centre.  Elizabeth said she would be happy to take part in any future research programmes but once again I am hearing the same old story about lack of funding for any therapeutic care.  I as a mother am happy for a different approach rather than more and more mind altering drugs and Elizabeth has responded much better to alternative care but I have had to provide this myself and I think it depends on the area where you live as to whether you get this kind of beneficial care or not.  Elizabeth did say that CBT helped whilst she was a patient on the wards but nothing is provided in the community and in six months, Elizabeth has had nothing apart from what I provide myself.

I would recommend joining ISPS, particularly for professionals, in order  to keep up to date with the latest developments and to hear from Professionals such as Dr Bent Rosenhaum and how such care has benefitted service users which I was most interested in.   It is a shame so much money is being wasted. This could go instead towards a research programme and provision of such care, which could benefit my daughter and others who do not get on with the mainstream care of drugging.   I bought another book at this conference entitled “Understanding and Treating Patients in Clinical Psychoanalysis by Sandra Beuchler. There were clinicians, researchers, service users and carers who attended this event and I know most carers and service users would like to see choice and there is none at present.  When a patient goes onto an acute ward then drugs are all too readily on offer.  In view of the increased demand for beds and overflowing wards, a different approach is needed and I feel a patient should be treated as an individual.  In the current climate of austerity and evidence-based practice research can play a crucial role –  how I agree with this.  The event was held at the Tavistock and Portman NHS Foundation Trust and I found it very beneficial to attend.

More therapeutic care is what is needed as in this case, we are seeing some signs of physical decline shown by recent endocrinology tests and all the more reason to rely less on these mind altering drugs and look to a different approach.  I am told that this may not suit everyone but it is better than drugs.   No decent doctor should ignore physical illness in favour of pushing drugs to the maximum yet they do and do not check to see if drugs are contra indicated or care if there are adverse reactions and complaints of side effects.  I am told the dosage of Clozapine is too high right now and in any case Elizabeth has asked for it to be reduced However the consultant psychiatrist and team are ignoring this fact along with her request.   So I feel it is very wrong that a patient should be forced to take drugs for the rest of their lives regardless of physical illness for the sake of convenience and this is why there needs to be better facilities because to be able to do anything effectively there needs to be the facility such as Chy Sawel and Soteria.  A patient should be listened to by a psychiatrist instead of ignored.

The new social worker came again last week but I was out at the time and the carer told me there is going to be a new care coordinator appointed with medical background who I hope to meet this week.  I understand Elizabeth mentioned about the ISPS Conference we were going on and that is a good thing so that the team themselves can be aware of the benefit of them attending in future.   I am re- joining ISPS next year and Elizabeth will also have a membership.   I am very interested to hear that they have a conference in New York.  I very much like New York but did not have much time to look round last time.  I would like to take Elizabeth to see New York and am going to find out whether this will be possible.    If Elizabeth can stand amongst huge crowds at Winter Wonderland yesterday evening then I am hopeful that I can take her abroad to  New York and Finland -we are having no problems at all with Elizabeth so I have no idea why the team persist in labelling her as they are doing when the correct diagnosis is PTSD – which is backed by research.

At Winter Wonderland when we eventually got in, the crowds were huge.  We had to queue for a long while but it was a good evening and party atmosphere.

I have two days off next week- lots of appointments planned. The Neurologist appointment has been arranged and I must speak to the GP about the dietician following the private Endocrinology tests and the other tests I had done for Dr Walsh which the team have  ignored.  Whilst the  GP cares about physical health, the psychiatrist  experiments on different drugs.   Despite saying this there are a few who are good but the majority of psychiatrists do not seem to care about physical health and choose to ignore side effects and just raise the drug or give another drug or several at a time.  I wonder if they are up to date on their knowledge on these chemicals as they don’t look properly at the files for instance a consultant psychiatrist at the Bethlem said he had “enough reading to do” – they are not interested in looking right the way back in the files and want to start afresh and this is wrong in my opinion as a consultant psychiatrist should know what happened to that person in great detail and that can only be achieved by reading the files thoroughly.  Anyway I am looking forward to attending a specialist seminar on 10th December about Schizophrenia Genetics.  Professor Michael O’Donovan is going to be speaking who specialises in diagnosis and management of Schizophrenia and psychosis.  My father had Alzheimers and this is another speciality of his including ADHD –  I hope I get the chance to speak to him  –  Professor Michael O’Donovan leads a large international schizophrenia research consortium and is also the Academic Psychiatry Lead for the Royal College of Psychiatry.   This is the 15th Paul Janssen Lecture.

The last lecture was “Preventing Schizophrenia – easier than you think?    – Prof John McGrath, Queensland Brain Institute, University of Queensland, Australia, Prof Tony David –    I would entitle the lecture “obtaining a diagnosis of schizophrenia is easier than you think” 

Changing the subject, today I have put up Xmas tree and decorations –  still have a lot of shopping to do and must go to Westfield Shopping Centre –  Both centres are very good but the nearest to me is Shepherds Bush.   This is a fabulous shopping centre and this year I will take Elizabeth there to do Christmas shopping.

 

I was delighted to see advertised at a local health store this event last Wednesday about a treatment I had not heard of before and I had not even heard of the local Natural Health Centre.   I am all for alternative care as after years of drugging and a string of different diagnoses my daughter’s physical health is being affected as I have proven and I do not want this fact ignored by any of the team.  I was happy to see that some local doctors were looking for new approaches and this may help Elizabeth.

Elizabeth did not feel up to coming but no wonder why having taken the evening dosage of Clozapine.   After taking this chemical she has to lie down – that is the effect of this drug which is supposed to be used in cases of “treatment resistant Schizophrenia”  –  however this means poor or non metaboliser so I cannot understand why this chemical is being given when clearly there is a problem with metabolism and this could be doing more harm than good.  Anyway it is NOT recommended for the new diagnosis of PTSD.  I also cannot accept that a report which is highly accurate has been ignored and deprived to Elizabeth and I have made sure that she knows about this report which everyone in the family agrees with.  The team like to say she has Schizophrenia but have not come up with any scientific evidence to prove this whereas I have a full report that states PTSD by a consultant psychiatrist of many years experience which we are all in agreement with.   When someone is trying to withdraw from ANY drug they suffer withdrawal symptoms and sometimes patients are so affected by the side effects they are desperate to come off them yet are forced to take these chemicals and they do not address the underlying causes so in actual fact it is a complete waste of money.  It is a huge waste of money when a patient cannot metabolise the drugs and something should be done about this problem.  The less drugs pushed the more money saved and if there were decent centres like Chy Sawel then this would look at more than just drugging – physical health and nutrition and therapeutic care.

Anyway, I had a chat with some of these specialists and was impressed with what I saw of the Havening Therapy –  two people from the audience who had very real phobias/suffered trauma were helped.  If they can be helped then there is hope for Elizabeth and anything is better than more and more mind altering drugs.  I took away with me some literature “How may Havening Techniques help you or your clients? – treating phobias, panic attacks and chronic pain.  Treating emotional responses resulting from traumatic events.  Helping people let go of grief, anger and fear or stress responses.  POST TRAUMATIC STRESS DISORDER –  well I have nothing to lose  by referring Elizabeth to these excellent doctors –  the way I look at it is “nothing ventured nothing gained” –  I will never know until this is offered to Elizabeth and no doubt this is not on offer under the NHS like it should be.

“Havening , also known as Amygdala Depotentiation Therapy (ADT) is going to change the face of therapy across the world.  What used to take months to cure can now be done in minutes in most cases.  PTSD, trauma, pain, depression and many more disorders.  The initial study recently completed by Kings College London shows the remarkable effectiveness of this extraordinary set of processes.

At last I have found something decent in the local area and shall  be contacting these doctors and making appointments for Elizabeth.  Now I have discovered the local centre of Natural Health that hold regular events which I can go to in the evenings and I look forward to attending things like workshops to teach practical skills ie aromatherapy, homeopathy for instance – meditation evenings and courses – information /evidence to support therapies which will enable patients and doctors to make the best choices about treatment within the NHS.   Well that sounds interesting –  I am always interested to hear of best choices as this is something that has been overlooked in Elizabeth’s case but maybe now I know what care is available this can be given to Elizabeth instead of all these drugs especially in light of her diagnosis of treatment resistant.(poor or non metaboliser).

I am very impressed to see there is more than one GP involved and I have decided to join this organisation.

I shall write to some of these contacts tomorrow to enquiry about joining.

Today I have taken Elizabeth to a very nice vegetarian restaurant and then we did shopping and I discovered another very interesting place where you can get a variety of health drinks and products.

Tomorrow I am going to a craft fayre with Elizabeth and close friends I have known for years.

The social worker came to see Elizabeth and I believe is trying to arrange a meeting –  I have had to use up nearly all my holiday when the team deprived the Clozapine and I had to go to lengths to get this chemical  otherwise I knew that the team could accuse me of depriving the drugs like they have done all along.  So it is difficult but I have a day off soon for the Neurologist appointment so I hope they can fit this meeting in around my busy schedule of appointments.  I wonder what is this new team that Elizabeth is being referred to.  The very best thing would be to give her direct payments.  What she needs help with is to get out and in six months has not been out on her own and it would be nice for her to decide on who she wants –  it is very bad that nothing has been done for Elizabeth in all this time.  Had she been given just a little bit of direct payments I could have arranged for someone of Elizabeth’s choice to come round to the house and take her out to the gym or other activities.  Elizabeth is fine now she is not in a MH institution in terms of behaviour however she suffers panic attacks and is petrified before going out places.  She also feels dizzy which is probably due to the fact she is on far too much drugs – the dosage is too high and should be reduced.  I am paying for the personal trainer and she could benefit from more sessions and another thing about the drug Clozapine it causes tremendous weight gain and that means looking at diet –  my carers are very good but cannot take her out all the time and the more she gets out the better as I am keen for Elizabeth to move on in her life.

I have some friends right now going through a very tough time.  They have sons/daughters on lengthy sections.  It is important to know that not everyone on a section such as this or even in a secure unit has killed or harmed anyone.  I think the system in this country is appalling and injustice is when someone ends up imprisoned who was never a risk to society and further injustice of labelling someone for life and taking control of them to the extent of depriving their contact with family for instance.  THE PUBLIC SHOULD BE AWARE THAT THERE IS SUCH TERRIBLE  ABUSE GOING ON AND BREACH IN HUMAN RIGHTS LAW CONSTANTLY – IT IS DEVASTING TO THE FAMILY OF THAT PERSON AND THE PEOPLE WHO SHOULD BE DOING SOMETHING ABOUT IT IS THE GOVERNMENT AS THEY ARE WASTING HUGE SUMS OF TAXPAYER’S MONEY – how can anyone get better when incarcerated on shocking wards for so very long and some of these wards are horrific. There should be a complete  review and accountability to the public –  many of these patients that are made out to be a danger to society in fact are not.  They are being used as human guinea pigs with drugs given at high levels.  Others are left to struggle in the community with little or no support.   Physical health is being ignored in favour of drugging that can lead to permanent disability and serious physical illness.  As regards justice this is also denied to many vulnerable patients and some become too weakened to ask for things and deal with situations and end up permanently institutionalised – some are sent to private sector establishments like Elizabeth – this must cost a fortune and they are kept for as long as three years or even more in some cases.

I have been asked to speak at an event soon and I am delighted to say that Elizabeth’s sister will speak alongside me and Elizabeth herself is welcome to come and join us if she feels up to it and I am pleased to say that since coming home she is finding it easier to talk to people and has confided in some of my close friends.   I am not always around as I work and Elizabeth is more than capable of saying “no” to me whereas with the team she under strict control in an environment where coercion was rife and human rights forgotten. She is no longer clinging to my arm quite as much as before when out walking but I am concerned about the arm movements and when you tell her about this she is oblivious.

Christmas will be happy this year and there will not be the problem of driving there and back to hospital or care home picking up and returning Elizabeth – the hospital was a 5 hour journey away and even the care home was hundreds of miles away – I am looking forward to Christmas this year for the first time in a long while.

SPEAKERS;    THE GREAT PLAINS LABORATORY, KANSAS USA – WILLIAM SHAW Ph.D

 

On Saturday last week I took Elizabeth to meet other mothers who would like to see an alternative to just drugging by way of a specialist centre that treats patients as individuals and gives proper assessments and unique care based on nutrition.    These are a group of mothers/some fathers who have sons/daughters trapped, incarcerated long term on acute wards and in care homes, some being placed a long distance away from home and these parents would like to see change in a system that is failing – you only have to look at the overflowing acute wards and demand for “care” and patients do not seem to be getting better and end up in the system long term.   Many patients along with us parents are upset to  see a system that is abusive.  Forced drugging – exclusion of families and coercion by staff.    Not every case of long term imprisonment is because someone is a danger to themselves or others but because they are so weakened by the drugs they cannot go through with a tribunal or have lost the strength to speak out and they end up becoming dependant and under control and disabled by being institutionalised.  I do not think that labelling helps and believe this to be the cause of stigma as once you get a label it is for life – this is totally wrong as people get better despite being given these shocking labels and the public are being misinformed as many cases of psychosis are caused by the drugs that a patient is prescribed.   A patient may have an adverse reaction to a drug because they cannot metabolise the drug and nothing is done in the UK to test this before giving drugs to patients. The system itself allows for the weak and vulnerable to be used as human guinea pigs and the main “care”  is drugging and ECT and I think the system is in desperate need of change.     Dr William Shaw PhD of Great Plains Laboratory was speaking at this conference  held over two days in conjunction with Bio Lab.  I  bought a book entitled “Biological Treatments for Autism & PDD” by Dr William Shaw Ph.D.    It was good to see the other parents who I have met with before on other occasions.  It was good of  Dr Shaw to spare time to meet with us and I would like to see him involved in the care we wish to see.  I have already had several tests done at Bio Lab and it is wrong of the NHS to dismiss such tests on physical health that clearly show decline.  Whilst Elizabeth was in Wales I presented these tests as evidence –  I was hoping that Elizabeth would have holistic care but it was far from this and now I see that the private sector care is no better at all –  it was wrong of them to carry on with the Metformin being given off label for weight loss    Well after meeting Dr Shaw I am really determined to look further into matters.  I am looking closely at diet and nutrition and the GP is referring  Elizabeth to a Nutritionist.   However already physical health problems have come to light and the Bio Lab offer tests unavailable under NHS.  The tests are not expensive compared to the cost of  long term incarceration of patients who are not getting better on acute wards. If such tests determine food allergies/gluten/lactose intolerance/infections and other problems then this could save money as proper attention can be given to diet/nutrition, etc.   Unfortunately in respect of Chy Sawel it comes down to funding and we discussed ways in which to raise money for this unique centre to be set up and suitable premises have been seen in Cornwall and I hope these premises can be acquired.   There is huge demand for a unique centre offering with strong emphasis on nutrition and minimal drugging and a different, more humane approach that properly assesses a patient on an individual basis.  This is what we all want and it would wonderful if we had choice in this country.   Whilst Elizabeth has adapted well coming back home after years in the system,  ultimately environment is important  and I believe an acute ward can be traumatic and stressful for a patient who could benefit more from being  in a peaceful/ natural environment  that offers a completely different approach.  There are many assumptions surrounding family if someone within that family has a MH condition and this is why I would like to see Open Dialogue..  It is wrong to make assumptions and it is wrong the way someone is put under pressure by a team to say things against the family – if for instance the team do not like you because you have had cause to be outspoken then this is reflected in the files.    Psychiatry is based on belief/ assumptions and it is incredibly easy to get a diagnosis by way of what they call symptoms.  There are plenty of labels to give in the DSM.   If something is bad written in the medical records by one expert then others will go by this- it is a vicious circle.   No-one really cares to take account of what happened to that person in the first instance and that, together with treatment of drugs means that person may not get better.  Instead counselling and alternative therapeutic care should be given.  I am in favour of OPEN DIALOGUE. The drugs should only be used short term only and not forced upon anyone.

On Sunday, Elizabeth was tired as we did a lot of walking the day before so I went alone to the Good Food Exhibition held at Olympia which was very good.  I am thinking of cancelling the gym as she is not using the facilities – it is a waste of money – there is no help in getting her there and I am paying for a personal trainer to come round to the house.  I understand my daughter has asked for extra sessions but it awaits to be seen if this will be provided for her.  There is a new Yoga and Pilates studio which may well be better.  It awaits to be seen if any additional personal training sessions can be provided as this is beneficial to her.  When I took her to the gym Elizabeth was afraid to move from the edge of the studio and was not taking part properly in the exercises.   I am hoping the personal trainer will encourage my daughter to go up the road on her own but she has not done this since coming home.  She is more disabled now than previously because she was going out on her own places but it has only been six months and will take time to rebuild confidence.    She will cling to your arm and is afraid of falling as she feels dizzy but I have seen some signs of improvement since she has come home.  Being on Clozapine does not help as this is highly sedatory and Elizabeth has complained of feeling tired and lacking of energy.

Today we have met up with former “survivors” and later visited an old lady in hospital who we have known as a family for a long time.

Tomorrow meeting school friends who Elizabeth has known for a long time and we are gong to a craft fayre.

 

 

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