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Monthly Archives: December 2014

Christmas went well this year and it was wonderful to have Elizabeth home and not have to worry about who was going to drive there and back as in previous years and at Cambian we were really limited – 1 day and 1 night to share between all of us but now things have changed.  Elizabeth is not on a section or CTO and at home with the family and doing well and she is happy and so are we all.  The only thing that has spoilt Christmas for me is being so ill.  I have a viral infection that has led to a cough and unfortunately this wont go.  Yesterday (Boxing Day) I had a break from Elizabeth as she went to see the rest of the family and today I took her shopping in the sales.   Today Elizabeth complained of feeling dizzy on the drug Clozapine and would not let go of my arm.  She said she felt like she was going to fall.   Every day she has to lie down after taking this drug but usually after a while she is OK but dizziness is certainly a factor with this drug and she also complained of sharp pains and headaches today.  I took Elizabeth to the Neurologist just before Xmas and we have another appointment lined up.    Elizabeth is being transferred to another team –  I thought it was called the Enabling Team but now I am told it is the Crisis Team and they are based in the immediate area whereas the rehab team are based much further away.

Since nothing has been provided by the team I have arranged a therapist to come to the house on Monday. I was most impressed to see there was something good in the local area – a natural health centre and a few GPs seem to be involved and I like this as I thought there was nothing good – only drugging.   Of course the care I wish to provide is NOT available on the NHS.   What a pity but this did not surprise me as the bulk of the care has been one drug after the other and when all of these failed a transfer miles away first to the Bethlem (Bedlam) or as my daughter calls it “hell on earth” and then to Wales to Cambian and of course then the care home hundreds of miles away where there was a poor signal in the room and we could not get through on the phone.  Of course once under such establishments contact with families are not always encouraged as in my case –  it reminded me of a religious cult when someone is under the control of the team.

I am delighted that Elizabeth is responding well to the personal trainer and I plan to increase the sessions to twice a week.   I just want Elizabeth to be able to go out on her own – she is like a prisoner of her own mind now thanks to being hospitalized for so long – it has not done her any good that is for sure. Elizabeth has made huge efforts since coming home and is getting on with everyone in the family but needs prompting with most things. I as a mother would like her to be independent – with the level of drugging going on at the care home and whilst she was away how on earth can anyone be expected to function.   Well Elizabeth has asked to be reduced to a lower dosage of Clozapine as the level she is on is far too high.  Clozapine is contra indicated re heart conditions and I have seen in the files (I have been going through these with Elizabeth) that something has shown up in an EEG report –  well all the more reason to reduce this chemical and also the fact that sharp arm movements have been noticed when walking and the neurologist was most sympathetic to this.   I have also spent £1000 on private endocrinology reports and was most disappointed to find these had not been scanned onto the GP’s computer system.  Despite being so ill I went and got these and insisted that they be scanned as they are relevant too –  so much for the diagnosis of “paranoid schizophrenia treatment resistant” when all along I have proven there are physical health problems and shockingly these are not being addressed and nothing is being done about the level of Clozapine. Now there is a new consultant psychiatrist I have yet to meet  –  Elizabeth has two diagnoses the team have ignored ie Aspergers and PTSD.  I as a mother cannot ignore these and I have full reports –  so unless there is scientific evidence re Schizophrenia I am afraid I cannot accept this diagnosis and treatment resistant means poor or non metabolizer.  I feel that Elizabeth is not getting the correct treatment according to NICE Guidelines and the BNF does not recommend Clozapine for conditions such as TD.   I hope the new consultant psychiatrist is nice but I will soon find out – Elizabeth has made more than one request to be reduced off this drug to a lower dosage – anyway I will let you know what happens in due course.   I will also give you full details of my forthcoming speech alongside  Elizabeth and her sister  – it is only fair that they are present in case they themselves wish to join in and speak.      I do not hold meeting after meeting in secret like the team – I prefer to speak openly and honestly and I will be basing my speech on evidence.

It was good recently to meet some wonderful people that I have become acquainted with via the ISPS conference and what brilliant professionals you get to meet at such events.   I see they have a conference in New York – how I would love to take Elizabeth to see New York and I would also like to take her to Finland where they have open dialogue –    there is no need to drug to the hilt patients like they do in the UK in the most inhumane way by forced restraint and CTOs.   In Finland they have the right idea and it is no wonder in Tornio they have 95% success rate – well I want to see this for myself and take Elizabeth who spent the happiest time of her life working there once before being prescribed all these chemicals.

 

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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.

 

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