More Cooperation between psychiatrists and endocrinologists and a lot less between psychiatrists and drug companies is what is needed.
I wonder how many people like my daughter are being misdiagnosed because of lack of proper assessments and tests done. There is a condition called Selye’s Generalised Adaptational Syndrome where sustained stress has caused severe endocrine disruption and this is not just applicable to trauma cases in respect of armed forces. This can also be applicable to cases like my daughter and this would explain why the drugs do not work. Liver enzymes such as the P450 group might be compromised by an undiagnosed condition such as Selyes. It is no wonder why my daughter is not getting better if she is unable to metabolize the drugs which would explain why she has wrongly been prescribed Clozapine – it is worthwhile having the P450 liver enzyme tests done but why are these not provided to everyone diagnosed as being treatment resistant like my daughter and why are they not when someone’s physical health is at stake. By just carrying on with the same treatment it could be harmful to the patient like it is to my daughter. I have had some private tests done which have proven the decline on my daughter’s physical health. Patients who are caught in a revolving door style trap like my daughter was should be given the P450 liver enzyme tests as a matter of course and if someone has suffered trauma and the drugs are not helping then they should be given the correct treatment and in the file that my daughter has the correct treatment is intensive trauma therapy and I thoroughly agree with this. There should be specialist centres like Chy Sawel set up that properly look at assessments before these drugs are given in the first place and offer the correct treatment unlike what is currently available – continuous drugging regardless of any underlying physical problem caused by the severe stress over a long period for instance. My daughter was on Metformine for a long time and yet this should not have been given as the notes passed to the GP were vague. “Weight loss” but no proper explanation given – well I have read more about this and wonder if there is a problem with endocrinal function and now I want a re-assessment which I will have to pay for privately but this should be available to ALL patients as a matter of course and not just to assume that a patient has purely a mental health condition instead of investigating further into physical conditions. I have just been reading about C-reactive protein (CRP) which has been associated with a propensity to traumatic stress responses – thee seems to be some links with problems involved in drug metabolism. Some people have severe reactions to stress whilst others seem partially immune. I have read that C-reactive protein is involved in the inflammation process which is an endocrine function linked to the cytokine interleukin-6. Stress can affect so many people in different professions and having read this there needs to be more research done – I think the more I have been in stressful situations the more ability I have had to cope with this but yet there are others within my family who have not been able to cope and so I am extremely interested in what I have been reading especially when it could well be that response to stress, like response to impact injuries is partially biological rather than purely psychological.
Cytochrome P450 refers to a group of liver antigens that break down drugs and foodstuffs but some people are deficient in several of the crucial ones that metabolise psychopharmaceuticals and some psychopharmaceuticals inhibit some of the P450s- (CYP2D6 in particular). This could explain why patients like my daughter do not respond to drug interventions and in some cases suffer from very severe adverse reactions.
There have been observations made on the effect of stress on the endocrine system which clearly link hormonal damage to psychiatric episodes which has been observed over the past 100 years. Hypothyroidism as a result of extreme stress can manifest itself in psychiatric symptoms. When a patient is a non or poor metaboliser and when there is no evidence of any real psychiatric condition then psychiatric medication should not be given. Whilst Dopamine (D2) receptor antagonists seem to work in treating florid symptoms of schizophrenia they are dealing with outward signs- not causes or aetiology.
There are so many theories as to what causes mental illness when in fact people should be questioning the treatment and checking out the physical health condition of someone who could be suffering from a stress induced illness that involves a severely disrupted endocrine system which manifests itself in both physical and psychiatric symptoms. I have not yet read the book by Professor Healy called Images of Trauma but am going to order some new books now including that one which has been recommended to me along with Rethinking Psychiatric Drugs by Dr Grace Jackson and The Sickening Mind by Paul Martin which has been highly recommended to me and covers in detail the effects of stress on the brain and immune system and gives a detailed account of the effects of PTSD on mind and body. I am going to look on line to order these books shortly to add to my collection.
When I have spoken to professionals many do not even seem aware of Selyes Generalised Adaptational Syndrome and it is of concern to me as a mother that many do not know about this and yet happily prescribe drug after mind altering drug without any question and now I as a mother am having to question what is going on and intend to look into matters further. This aforementioned extreme condition, caused by excessive stress response releasing glucocorticoid hormones which act on the immune system. This can affect white cell count and block lymphocytes in the thymus. The thymus is very much associated with conditions which mimic full blown psychotic illness and it is damaged it will cause psychotic signs and symptoms which may be mistaken by psychiatrists for schizophrenia or bipolar.
IT IS ESSENTIAL THAT ALL PATIENTS HAVE A CHECK ON ENDOCRINE FUNCTION TO DETERMINE IF THE THYMUS IS FUNCTIONING CORRECTLY.
Some people known as high reactors have extra responsive hypothalamus-pituitary-adrenal systems and might have a psychotic episode triggered by a sever stressor causing an endocrine response in this system.
Since it is well documented that those with damaged thyroid or thymus manifest psychotic symptoms that respond quickly to endocrine rather than psychiatric treatment what on earth is going on that none of this has been properly investigated with my daughter and probably many other patients.
Anyway the last time I spoke to Elizabeth she was talking about packing for her move which will take place tomorrow to a care home organised by social services. One of the conditions of my daughter’s release is that I do not interfere with the treatment of my daughter but as you can see I as a mother have every reason to question the treatment of my daughter and next week I will phone the GP as I now have consent to deal with this GP that will be passed on to the next GP. It does not help when teams try their best to exclude families and play on confidentiality when in fact this whole matter is of public interest in my opinion. If patients are not being given the correct treatment then this is likely to put a strain on the NHS due to physical health problems. Neither the NHS or private sector hospitals have properly looked into this situation and have dismissed the private reports I had done and have also dismissed a report by the independent psychiatrist I appointed. They just wish to stick to a diagnosis which we as a family think is totally wrong and carry on with drugging as this is the easy way out. However I have looked at evidence of how very wrong the treatment is and how this could be harmful if no review of treatment is given when it does not work or if there is any question whatsoever as to the diagnosis.
Elizabeth liked the care home but only stayed there for 2 days and none of us have been properly told of her move. It was only when I telephoned the consultant psychiatrist right at the end of the day on Friday that I was told of her move. The location of where she will be sent is a lot nearer to Wales and that means I can go down for the day. No doubt the same treatment and same level of drugs will continue as this is hardly the place to do a proper review of the drugs. I have heard it said that being condemned to a life of drugging is whilst appalling to contemplate but being confined to a secure unit for life is far worse but I would say in response to these comments that this is of no consolation when my daughter has not had the correct treatment from the start and has been misdiagnosed and now has a new diagnosis which has been kept from her by the team and there have in the past been disputes by professionals over the diagnosis so therefore none of these comments give me any consolation. I also know for a fact there are experts in this country who know how a drug withdrawal should be properly done and this needs to be done with close medical supervision which would include serum level tests as well as monitoring for agranularcytosis. Also these drugs drain the body of nutrients and this is why I look forward to when Dr Walsh comes over here and would recommend his book “Nutrient Power”. If the right facilities were provided with proper monitoring by professionals who know how the drugs work properly then someone like my daughter could safely come off the drugs however nothing is being done properly in this country and someone is given a life sentence as there is virtually no help and no facility for them to go into even when a diagnosis is in question and perhaps all along they have been misdiagnosed when they have a physical condition that manifests itself in episodes of psychosis. I think it is shameful what is going on in this country and I want something done about it. I am not alone there and I am looking forward to meeting with other parents to discuss the setting up of Chy Sawel. Dr Walsh needs 20 doctors to get involved in this project and there is interest from doctors too who are quite rightly fed up with the current system which clearly is not working when the acute wards are overflowing and it is wrong there is no choice. It is highly unprofessional of some of these doctors and social workers to sit there throughout meetings and smugly smile and I have seen this more than once. In such a high risk profession what checks are being done on these people who are all too happy to dish out drug after drug to my daughter when her diagnosis is in question. They try and put all the blame on the family and upbringing and they try to get rid of you as the nearest relative by bullying and even saying nasty things to the person that is in their case about a mother who has questioned the care and found it to be wrong. If a system is wrong then how on earth can nurses and doctors provide the correct care – it is not that there is no decent staff and that they are all bad but I do not have a good word to say about a system that does not look at physical health first and is quick to label someone to the point they just give up with no hope and then there is not enough support in the community leading to that person going downhill.
I do not like the attitude of these psychiatrists who let power go to their heads or social workers come to that. Someone has warned that my challenging of these professionals could well put my daughter’s life at risk for the reason that they are only interested in their own power, position and money – nothing has improved in the bigger picture over the past 50 years that they will react by increasing the drugs and being generally nasty to the patient and their family. Some people have said to me that it is a waste of time that nothing will be improved however I would say that I have overwhelming proof that what is going on is wrong and that I can back this up with relevant research papers. For anyone who says – it is too late or you may as well give up now. I would say that it is never too late and as regards risk to my daughter well I am concerned right now about my daughter’s treatment that her life being put in danger as she has been MISDIAGNOSED and is not having the correct treatment so now I want all the tests done to ensure she gets the correct treatment.
It is risky to withdraw someone off drugs and if done too steeply this will fail and if not properly monitored it is life threatening to the patient however that is no excuse as when there is a blood disorder or serious problem I have heard that someone is in fact taken off the drugs but in the most shocking and terrible way. There are people who know a lot about these drugs and certainly these comments do not apply to social services or to all psychiatrists who do not know the full workings of the drugs in order to properly do any withdrawal.
Myself and other mothers want Chy Sawel set up where everything is done properly and there is proper monitoring, where there is such thing as open dialogue, where families are not treated like nothing and included where possible and proper look at nutrition as this is so very important. Antipsychotics are prescribed long term – therefore establishing a routine of metabolic monitoring is vital so that metabolic changes can be tracked and dealt with. The paper I am reading gives a lot of information on how things should be done, how to monitor, when to monitor, whom to monitor and the follow through ie. this would involve collaboration with primary care providers and other clinicians and referral to a dietician or metabolic clinic when high risk patients are identified like Elizabeth.