MISDIAGNOSED

When a report of many pages has been produced stating a different diagnosis then this should not be ignored in my opinion and not one person in the team has shown that report to my daughter and so I was left with the task of reading this long report to my daughter who has a right to know what is in there.  The report does not agree with the diagnosis of paranoid schizophrenia treatment resistant and I and the rest of the family thorough agree with this report and the treatment is INTENSIVE TRAUMA THERAPY.  Where do you go for such treatment – well this is something that I am looking into right now and will share with everyone in due course.  I would like the Country’s leading expert to be involved in this and am prepared to take my daughter to see such an expert myself in order that the files can be properly and suitably amended like they should have immediately been amended with the correct diagnosis.

 

I found from the beginning that the psychiatrist at local level was not interested in what happened to my daughter – this psychiatrist had come up with a label of Schizophrenia and insisted my daughter take anti-psychotics.  The reason for the psychosis in the first place was when the GP had prescribed anti-depressants and this affected my daughter’s behaviour.  I have since educated myself with all these drugs by reading suitable books such as Prozac Panacea Pandora and then I joined the website of Dr Ann Blake Tracy who was so impressed with my knowledge that she even suggested that I would be good as the London representative.  When I went into the meetings at the Bethlem I had brought with me plenty of information and advice including CDs – after all my daughter was meant to be there for a drug free period of assessment and I have the letter to prove this from Professor Robin Murray but then suddenly he distanced himself from the National Psychosis Centre.  This centre is aptly named as they cause the psychosis and certainly did a good job of this by mixing two drugs together and Dr Tracy told me that this would cause psychosis and the next plan was to section my daughter.  She had twice refused Clozapine and signed an advanced declaration and gave consent for me as the Nearest Relative to see the files.  Immediately this consent was withdrawn by the team.  Twice in 1 week the team approached my daughter asking her to go on Clozapine.  Twice she refused.   At first two weeks were spent in the hospital when nothing was done and then they tampered with the drugs in such a way that led to section.

The private sector is just more luxurious accommodation but the same kind of treatment – in fact it was even worse when a doctor did not like me and mentioned about my “past behaviour”  I had previously applied for the files as I have a right to see what is written about me but got nothing – nothing of relevant referring to “my past behaviour”.  If there was honesty in the profession someone should have had the decency to explain what they meant.  I had never threatened anyone – I even offered them references as I had every check done on me through job applications and wanted to be a police officer until my daughter had deteriorated so much that I had no choice but to appoint a private psychiatrist myself. 

Getting back to the report I had done – this report was done by a highly qualified and experienced psychiatrist who I greatly respect and it is disgusting how such a report should be ignored.

I have since sought more advice from other professionals and more than one back this report.

I have highlighted lack of communication with the hospital and GP as hospitals should pass on information to do with files and my daughter has been needlessly given Metformine for the past three years when this is contra indicated and I have proof of this.  Thanks to my complaint the GP is taking her off this drug but I have questioned that this is a diabetic drug and I have read that there could have been some underlying problem that led to this prescription and now I as a mother and nearest relative want a full investigation into this.  There needs to be more communication and I have said this before only last time I believe I referred to lack of communication between social services and the team.

Well my daughter is looking forward to getting on with her life but I want to make sure that everything is being done fairly.  When I did not hear from social services I contacted them today.  They refused to offer a stay at one placement which my daughter really liked and only gave one option and I pointed out that if this was down to money they should have discussed this with the family first and they did not.  They assumed just because my daughter liked it there that this would be the end of matters but I want my daughter to have choice.  She is not being allowed home which was her first choice and that is because the team do not trust me. 

 

However I have now been reading up on research that just cannot be ignored at all – no one whether a doctor or social services can ignore such research and this has highlighted where everything is going wrong as someone like my daughter could be misdiagnosed.  The reason I say this is because there are no proper assessments done.  I am having to pay privately for such assessments but in fact I believe they should be offered as once you put someone on these mind altering drugs it is not easy to come off them.

I have made some very good contacts via Twitter lately and cannot dismiss some of the information I have been given. Neither can I dismiss other information that has been passed on to me by experts and there is a lot of research going on in the background that the public are unaware of.

What tests do doctors prior to prescribing for tolerance, contraindications, concomitant prescribing or drug metabolites.  How much knowledge do they have on pharmacokinetics and pharmacodynamics, drug interactions and adverse reactions? 

How many times do social services attempt to replace nearest relatives?

Where can someone go in to safely come off the drugs when it has been discovered something serious is wrong such as blood disorders.

If such a reduction is done too steeply a patient would suffer terrible withdrawal – what knowledge is there on correct withdrawals and where are the facilities?

If there are no facilities then decent facilities should be provided as no one should overlook someone’s physical health.

If there was a decent facility provided then that would be better than a drug reduction in the community for instance.  A decent facility should offer professionals who know the proper workings of the drugs and are capable of monitoring a withdrawal properly. 

Why should someone suffer terrible side effects with their physical health becoming a burden to the NHS because there are no proper facilities for someone to go in and properly be reduced.   If a reduction was done as Dr Tracy mentions the patient would not suffer severe withdrawal symptoms.

 

What about the research into PTSD by Professor Healy and Professor Orner.    What about the fact that liver enzymes such as the P450 group might be compromised by an undiagnosed condition such as Selyes and if so the patient’s ability to metabolise drugs might be similarly compromised.  This would explain why so many different drugs have not worked for my daughter for a start.  This could also apply to many other patients who are consequently caught in revolving door style traps – no wonder the acute wards are overflowing.

Why is it that the endocrinal function is not checked out ?

I want to know now why the Metformine has been prescribed in the first place but the files have not been forthcoming so I understand and I have to wait 2 weeks as now the GP is doing some tests as I have quite rightly queried this.  The drugs are contra indicated and for this reason should never have been given in the first place.  The Metformine has now been taken off the prescription.

It is wrong to give drugs when a patient cannot metabolise them especially in concomitant treatment regimens.

 

There are people who are treatment resistant to any drugs.  More funding needs to be given to such important research as if someone like my daughter is never going to get better and become a burden to the NHS then this is a terrible situation especially as it would seem that more and more wards are being shut down  – A&Es and maternity wards and this is wrong.  I have discovered that the private sector offers just the same care but in a better setting and not everyone can get on and become well on a noisy acute ward and this is why there needs to be choice.

 

For example – SPEAKING OF CANCER DRUGS:   CYP3A is a liver enzyme that metabolises many drugs and can be inhibited by genetic variations and polypharmacy.  CYP3A metabolises Paclitaxel, a drug used in breast cancer.  If CYP3A is inhibited then the drug will not metabolise.  CYP3A also metabolises many psych drugs as does CYP2D6.  Somewhere in the region of 5% of Caucasians do not have CYP2D6 and consequently cannot metabolise the drugs that need it.  They are treatment resistant like my daughter is.   The P450 cytochromes play a critical part in metabolising many drugs and just about all psych drugs.  IF ANYTHING INHIBITS OR ENHANCES THEIR EFFECTS IT CAN HAVE A VERY SERIOUS CONSEQUENCE FOR THE PATIENT.   

With these facts in mind I wish to see the role of cytochromes written into mainstream prescribing why they sometimes fail.

This is of great importance to me as a mother that something is done about this situation as long term medication is no good as I am seeing nothing but decline and now the rest of the family are extremely concerned and we want every single test done and if someone is put on all these drugs without having proper tests done in the first place then these tests should be offered as a matter of course but I am having to pay for them to be done privately and this is wrong as not everyone can afford to have these tests done privately and in the circumstances may not get better because they have been misdiagnosed and are being given the wrong treatment.   Whilst some of the drugs can be effective for some people I am talking about the cases where the drugs do not work such as my daughter who will not get better on the drugs and I want something done about this situation.  Trauma can induce psychiatric injury and there needs to be more research and funding into this area.  Some of the drugs are associated with diabetes.

 

It is highly dangerous when withdrawals are not monitored properly and this is all the more reason for decent facilities to be provided especially when someone has been misdiagnosed or is suffering from serious side effects.   My daughter is on 350mg Clozapine right now but I have read that whilst a low dose of this drug on the one hand it is higher than necessary.  It would be better if say it was 100mg – the lower the better in my opinion.  I am fed up with being accused by the team of “seeking to influence the patient to discontinue her medication”    They do not know about the medication –  they are not considering my daughter’s physical health and have demonstrated complete lack of knowledge about the drugs in my opinion.  Social services do not know about the drugs and yet they use this as a threat!  I have said so many times I am not a doctor however I have looked into this thoroughly and have discovered that mistakes have been made.  It is not unreasonable to ask for the mistakes to be rectified instead of just plodding on giving the same dosage when in fact the Clozapine should be a lot less and the Metformine – now the GP can see no reason for this now that I have pointed out the drugs are contra indicated.   What is more I can provide proof of everything so the team cannot argue with what I am saying and it is unreasonable to use this as an excuse and then try and get rid of me as the Nearest Relative when I am looking into things thoroughly unlike the team as to the effects on my daughter’s physical health. This is where the whole system is going wrong as some patients are weakened and vulnerable like my daughter and would not have the strength to look into matters like I am doing and so may be getting the wrong treatment.  There needs to be an investigation into how this can be improved so that the patient is getting the correct treatment and is properly assessed before being put on the drugs in the first place but then again no one should be written off like rubbish.  I will not have my daughter being written off and want every single test done taking into account the important research I have looked at.

A specialist centre such as Chy Sawel should be set up providing the correct care with the involvement of Professors involved in vital research and the funding should be provided especially as money would be saved in the long term to the NHS if the physical health of patients was properly catered for and if the correct diagnosis was given as a result of proper assessments.  Endocrine problems could be behind cases of psychosis.  Defective thyroid and hypothalamus can manifest themselves in psychosis and the brain itself is a part of the endocrine system.  I want my daughter now to see an endocrinologist and this should be provided to ALL patients should they wish for a proper assessment as maybe their treatment is not working because they have been misdiagnosed.

It is important that I pass this on to Mr Burstow in order that something can be done about this and I do not want just a discussion as this requires action.

I am looking forward to meeting up with all the mothers again soon who want to see decent care set up in the UK and hope to discuss this in more depth with Mr Burstow again as there is too much information to incorporate in one blog as I have research details etc that needs studied and I would need to bring all this with me to another meeting as I am determined to get something done about this situation.

 

 

 

 

   

 

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1 comment
  1. Will said:

    Truth versus Ego, my view Truth will not remain hidden?, and the case of Susan & her daughters like many others will put psychiatry on the line (hopefully firing line lol)

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