I have not been to see my daughter Elizabeth since she has moved away from Wales.  However the rest of the family have been to see her.  They had to help Elizabeth sort out so many clothes that no longer fit her.  The drugs cause weight gain and she had according to her sister accumulated so much in the way of clothes that are no good any more. 

I myself have been away this weekend but hope to go and see her at the end of the month.  It is not so easy when the team place someone a fair distance from home and the conditions of Elizabeth’s release is that of course she remains under the care system and is not allowed to come home to live despite the fact she said this is what she wanted. I think the idea is to distance that person from the family making control of that person easier. I have every right to be concerned about Elizabeth’s treatment as for a start 500mg Metformine a day was given unnecessarily by ongoing teams, the initial prescription had come from the Bethlem. Noone stopped to question the fact these are contra indicated drugs so therefore no one cares about Elizabeth’s physical health and the drug Metformine was given for about 3 years prior but then what can you do as a parent when a team play on capacity and state all of sudden that the person you care for does not want you to see the files or have involvement in medical care. This was in stark contrast to when Elizabeth went into the Bethlem and had signed an Advanced Declaraton and said she did not want to be experimented on and also giving consent for the whole family to be involved and see the files. This is how the team play on capacity – the last thing they want is for you as a parent to see what they are doing with the drugs and I have attached a link of a good example on shocking care in the UK. This is the reality of the Bethlem. I admit that the area where I live is not the best for Elizabeth’s recovery and she needs to be in a more quiet and peaceful area but having seen what has happened to my vulnerable daughter in past care I am extremely concerned.  I have been thinking of moving out from London.  I am no longer happy here but I have a job in London and the problem is that there are other people at home who like living in London so it is like a trapped situation but I would have Elizabeth home and contrary to what the team say that I wanted this, at the time something very bad had happened to Elizabeth but no way did I expect such shocking care and truly thought that this worldwide renowned hospital would give my daughter the drug free period of assessment that had been denied to her locally because they do not have the facility on the local ward. This could not have been further from the truth. I even have a letter offering the drug free period of assessment but no sooner had Elizabeth arrived the team set about pushing the drug Clozapine “its all about Clozapine here you should have done your research”. Not once was my daughter referred to an Endocrinologist to see if there was any underlying health problem.

This weekend I have been away to a very nice and peaceful area. The best place for Elizabeth to get better would be somewhere like a coastal area where it is peaceful and can offer a more healthy lifestyle.   I certainly do not have a healthy lifestyle in London and a job is essential in order to keep things running.  

Elizabeth is drugged up on highly sedatory Clozapine thanks to the awful care she received at the National Psychosis Unit.

This is one example of the kind of care on offer there allowed to go on in the UK. 

Today I telephoned Elizabeth but could not get through “press 1 to leave a text message”. I often got this at the previous hospital especially when the consultant psychiatrist decided it was best that Elizabeth did not have much contact or so it would seem. I was not wrong as I have letters to prove it but it was not true that Elizabeth did not wish for contact as I have proof in my mobile phone which would rubbish claims that it was Elizabeth who did not want contact with me especially. I only spoke briefly with Elizabeth as it was time to give out the drugs – I cannot refer to these mind altering chemicals as medication simply because they do not work and Elizabeth has a diagnosis of “treatment resistant”. Anyway I had to phone the office and I had quite a long conversation with a member of support staff. The hospital had not passed on my address to the care home and I had to do this myself plus phone number etc – it is astonishing that I have had to do this because the hospital discharging Elizabeth should surely have passed these details on. Anyway Elizabeth sounded OK on the phone and the staff say she has settled in OK. I went on to tell the support member of staff about the new diagnosis of PTSD and he seemed unaware. IT IS ASTONISHING! THE NEW DIAGNOSIS IS PTSD and I have looked up NICE guidelines and the treatment is incorrect that Elizabeth is currently having. Not only that if it was true her diagnosis is what the whole team assume then she is on the wrong dosage of Clozapine and it is TOO HIGH. I went on to tell this support worker about the Metformine – CONTRA INDICATED DRUGS which I had to personally confront the GP about. I made sure they knew that the consent would follow from Elizabeth to the new GP – I have been told Elizabeth does not have diabetes however I want to know how such a mistake could have occurred with 500mg a day being given of Metformine since the Bethlem. I would urge every mother to check up on what is being done in terms of drugs as it is appalling that for all this length of time Elizabeth was put on this chemical for nothing. I told the support worker that I had lots of evidence suggesting that my daughter could have a problem with endocrinal disorder and that she may not be able to metabolize the drugs and I intend to find out and am prepared to pay for every test necessary. Elizabeth may even need a special diet and I shall look into this as well. All of these tests will be useful for when Dr Walsh comes over again which I cannot wait for. I was told by the support worker it is early days and I know this however if my daughter has a physical illness rather than a mental illness as it looks like I shall want something done about this and I hope that others will look to what I am going to do about this situation. If the treatment is wrong Elizabeth is not going to get better and that is why it is best to get everything checked out.

I will be visiting Elizabeth at the end of the month and I hope before then to speak to the consultant psychiatrist as I have been looking at lots of research lately and need to pass on this information. The care home tried to put my mind at rest by saying they were highly qualified in medicine and knew what they were doing however the support worker could not argue one way or the other that I have a lot of research which should not be ignored in favour of carrying on with the same old treatment that is never going to make Elizabeth better.

I hope they sort the problem with the phone out as it is no joke. It is not that we phone every second but if you cannot get through on the phone it is not good at all.

Over the weekend I plan to type up the minutes of the meeting for Chy Sawel and I have letters and emails from other people who are experiencing the most shocking care in the UK. I have referred them to Chy Sawel and what I hope will be achieved there with unique and humane care.

It is horrifying to read some of the emails etc that I receive and the suffering going on to so many others – all this makes me all the more determined to see Chy Sawel set up.

It is early days to comment but my daughter Elizabeth has just  moved to a care home still miles from home organised by social services.  Elizabeth is settling in at the moment and I plan to go and visit her at the end of the month however what is on my mind constantly is the ever increasing knowledge I am gaining by looking further into matters. 

I have read that if a patient has been wrongly diagnosed with Schizophrenia when in fact the psychotic symptoms are being caused by a neuroendocrine disorder it is possible that this will interfere with the metabolism of atypical antipsychotics. While it is difficult to determine any individual biomarker an endocrine dysfunction will be possible to diagnose. Damage to the thymus can cause psychotic symptoms and so could a defective pituitary.

Where this is suspected an endocrinologist should be consulted. Endocrine defects will affect drug metabolism and should be explored.

Neurosci Biobehav Rev. 2013 Jun;37(5):860-95. doi: 10.1016/j.neubiorev.2013.03.024. Epub 2013 Apr 5.

Current status on behavioral and biological markers of PTSD: a search for clarity in a conflicting literature.

Zoladz PR1, Diamond DM.

I have spoken to a member of the new team and this person sounded nice but I did point out that I felt that my daughter had a physical problem – therefore I would need to take her for tests and refer her to an endocrinologist.

I have looked up NICE guidelines but could not see any recommendation for the current treatment which is above the dosage it should be ie 350mg Clozapine whereas it should be 100mg and I need to take this up with NICE as others could be getting over medicated. Anyway I saw some recommendations but it is clear to me that the treatment is wrong and needs to be reviewed. Also now at long last the blood tests have been done I am awaiting the results and so are the rest of the family. What worries me is that Elizabeth has been placed somewhere where it is not a suitable environment to alter the treatment to what is correct and that is not 350mg. In an open and lovely country environment this would have been better in my opinion and this makes me all the more determined that Chy Sawel is set up. I am not the only one who feels this way and now everyone has passed on their email addresses to me and many people are keen to see such wonderful change. The mistakes that have been made with my daughter’s care should be learned from and that is why I am making it public and all the more reason for a centre like Chy Sawel to carry out proper assessments to check on someone’s physical health which at the moment is being totally overlooked in favour of drugging. If a terrible mistake has been made and someone given the wrong treatment then this shows the need for somewhere where there are proper and thorough assessments and not only that humane treatment.

It was good to meet with all the parents again and we have formed a Committee now and discussed the business plan.

I now have all the minutes to prepared from this meeting and this week hopefully will have the results of the long awaited tests and I need to ensure that the consent is passed on to the new GP in accordance with my daughter’s wishes so that I as the nearest relative can check on her physical health which is something that no one seems to care about and in terms of risk factors should come top and this is something that should be emphasised at Tribunals for instance and that report with the correct diagnosis of PTSD should not be overlooked.

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. 

www.psychiatrictimes.com/cme/metabolic-monitoring-patients-antipsychotic-medications/page/0/4?GUID=e7ed468c-BA8B-4A19-8A47-AC23F4C5219F&rememberme=1&ts=03012014#sthas.yhn2JlyN.dpuf  

Today I telephoned the GP as we as a family have been worried about Elizabeth’s physical health and Elizabeth has given me consent to deal with the GP which will be passed on to the new GP as Elizabeth was with me when she openly gave her consent.  I think Elizabeth knows that I am the one who cares about her physical health.  I am the one who has read a report by a consultant psychiatrist who I truly respect who has had many years of experience.  For once the diagnosis sounded right to the entire family who know the full background of Elizabeth and everything that has happened to her including the serious incidents that have been covered up.  The new diagnosis is PTSD and I as a mother and nearest relative am appalled by a team who have not given a copy of this report to Elizabeth when she has a right to know what is in it including the fact that the current treatment is NOT recommended.  So the team have knowingly been giving CONTRA INDICATED drugs until I as a mother pointed out how wrong this was.  Immediately 500mg of Metformine was taken off the prescription and I have been patiently waiting for the news –  we as a family need to know if Elizabeth has diabetes.  If Elizabeth has this then she would need a special diet.  So today I telephoned the GP to find out –  apparently Elizabeth was due for an appointment yesterday to have a blood test and did not turn up.  So the next thing I did was to telephone the private sector hospital where Elizabeth has been for over 2 years now.  I first of all spoke to the Manager and she said she would pass on the message to the new consultant psychiatrist.  For the first time I spoke to this new consultant psychiatrist yesterday and he sounded OK however he disagreed that the therapeutic dosage of Clozapine should in fact be 100mg and Elizabeth is on 350 mg –  I have sought top level advice regarding this and contacted NICE.  I have received an automated reply so far and am waiting to hear from them.  Surely the minimal of drugs should be given but it would appear that no one could care less about physical health and it is a good job that I am looking at this very carefully and I would advise all mothers to do the same and to check what is going on when there is more than one team involved as quite often there is not a good level of communication.  I am not blaming the GP but in fact the hospital should have provided every little bit of detail as to the real reason why Elizabeth is on Metformine.  I am assuming at this stage that something has shown up on tests and in fact now want further tests done as I have been reading about the research called Selyes Generalised Adaptational Syndrome – now I want every test done necessary including the P450 liver enzyme test.  I am more than happy to pay for these tests to be done privately but my point is that these tests should be readily available and if there is any problem then the family should be told.  

So, Elizabeth did not turn up for the appointment and that is because she was not taken and when I asked why she was not taken for this appointment I was told by the consultant psychiatrist that Elizabeth had eaten first and therefore these tests could not be carried out at and the tests happen to be crucial as even the GP is querying why Elizabeth is on Metformine.  Anyway I told the consultant psychiatrist that we as a family wanted to know the result as we needed to have this information in case Elizabeth had diabetes and needed a special diet.  I asked that the consultant psychiatrist re-arrange the appointment with the GP and I believe this has been re-arranged for tomorrow.  You can be sure that I am going to check on this and ring the GP.  An excuse was made by the consultant psychiatrist that they could not keep an eye on her as regards her eating something first – that to me is no excuse whatsoever and is making me all the more determined to find out what is really going on.   It was during this conversation which took place right at the end of the day that the consultant psychiatrist announced Elizabeth would be moving.  She would be moving by the end of the month.  Originally Elizabeth was told it could take a month and I thought she would be eased in gradually and allowed to stay for a bit longer but now all of a sudden the team want her out of this private sector hospital and away from Wales.    I as a mother really liked Wales –  the area itself is beautiful and it is peaceful but now Elizabeth is going somewhere else –  I cannot say where but she is going to a care home.  Elizabeth liked the placement but my objection is the way everything has been done.   The care home was what was earmarked from the start and the family wanted her to go to a farm-like environment – she was taken to see one such place but did not like it but when asked said she did not meet any other residents and she was not allowed to stay.  Then I was told in writing by her social worker that I should approach the other placement which was Elizabeth’s favourite and arrange it myself. I have previously documented what happened and I was told that social services had arranged the placement already at the care home and that it would be inappropriate for Elizabeth to even go and stay – talk about control and social services even think they know best about the drug Clozapine  –  what knowledge do social services know about the workings of the drugs and what is best in terms of medication for my daughter.  Why haven’t social services or anyone from the team come to that told my daughter about the report stating there is a new diagnosis.  My daughter was recommended a solicitor from the hospital and when I asked Elizabeth if this solicitor has visited the answer was no.   It is not surprising when I have been told that MH law can easily be usurped and I think that this is all the more reason that the law is revised because the weakest and most vulnerable people are NOT being fairly represented.   What gives a team the right to treat a family like they are invisible – I suppose the power goes to their heads and they forget they are funded by taxpayers and I am one of them and they think they are greater than God.   I call it bullying in the form of exclusion and bullying in the form of harassment when they want you to agree to a section 3 and then this section is dragged out for a lengthy time.  In fact under the private sector hospital EVERYONE IS SECTIONED and I have heard these sections go on for as long as 3 years.  How much money is that I wonder?    I would like to know how much the other placements are as opposed to the one that social services chose.   If Elizabeth had chosen herself without any influence and had been allowed the chance to stay at the other placement I would have felt happier. 

One of the conditions of Elizabeth’s release is that I do not interfere with the drugging.   I have sought top level advice. –  I have a right to know if my daughter has diabetes for a start or any underlying physical health problem and so does Elizabeth who has not been treated fairly at all.  Also I have a right to seek another appointment and pay for whatever private tests are necessary.  For instance it has been recommended that Elizabeth sees an endocrinologist and if Elizabeth is not metabolizing the drugs then the drugs could be doing more harm than good. 

What kind of profession ignores physical health for the reason of convenience.  Well I am not the kind of person to take the easy way out of anything –  if something is wrong I will seek to put it right and a team should have the utmost concern in relation to Elizabeth’s physical health.

It should not be ignored that more than one expert has advised me and if it has been covered up that my daughter has got a serious medical condition AS A DIRECT RESULT OF THE DRUGS GIVEN. then the team should have the decency to advise the family. 

Like I have previously said Elizabeth would need 24 hour care now.  Physically she has declined to the point the rest of the family are concerned.  A young person like Elizabeth should be out enjoying herself but she is exhausted – the drugs are highly sedatory and should never have been given to Elizabeth in the first place as it was against her wishes and she signed an advanced declaration.

I am not alone as others have written to me to tell me how they have been threatened with displacement  as regards Nearest Relative.

People are becoming more outspoken about what is going on not just in the UK but in all so called civilised countries.  There is a lot of money to be made out of someone like my daughter and the appalling thing is that no-one cares. 

Very soon I shall be meeting with the mothers/parents on 4th March to discuss the business plan of Chy Sawel –  if only this was set up  and unlike the team I respect and wish for patient input and involvement with my daughter’s care.  It is not about qualifications it is about the way someone treats another human being.  It is about listening and I will leave you with my daughter’s comments “WHY WONT THEY LISTEN, MUM?”

My daughter Elizabeth has been in hospital a long time now and has been away from the family for quite some time.  I have documented what I see as the shocking treatment of my daughter who was moved away from local care to a supposedly worldwide renowned hospital – The National Psychosis Unit.  I have watched my daughter go downhill and be experimented on with drug after drug that has not proved effective – this is why I am against drugging as in some cases the drugs do not work.  With a string of diagnoses I have become interested in looking further into everything and have uncovered things that are just not featured in the press.  I have come to the conclusion that it is either through fear of publicity or fear of stigma that people resort to silence and I can well understand why because I am not the kind of person who will sit back and do nothing when I see things are wrong.  Things are very wrong with the care in the UK –  you can hardly call it care – it is a system that is all about control and the people in control are none other than psychiatrists and social services who are often a law unto themselves.  Having said all of this I am delighted to say there are a few good people –  I unfortunately have not come across many.  These people may say that if they spoke out against their profession they would end up jobless – they stay silent because of their families and income but do not like what is going on. Then there are some outstanding people I have recently come across – people who do stand up against their profession and I am proud to know such people.  May God praise them.

As far as I am concerned everything on this blog is reported with the utmost honesty.  It is a simple blog – I am not a professional and I am just a mother.  I do not make out that I know better and that I am one above the so called Professionals however all I want is honesty.  I have not seen honesty and I am going to share with you in the hope that things can be improved what I am currently going through.

It is not long now to when Elizabeth is officially off a Section 3.  She should never have been put on a Section 3 in the first place.  If things had been done fairly Elizabeth would not have been treated the way she was treated going back to the Bethlem Royal Hospital.  However things were not fair well before then and there were incidents that I cannot report on this blog that led me to complain.  A complaint should be dealt with in a nice manner –  it should not be documented that you as a mother are for instance an overbearing woman, over protective – someone who abused her daughter as a child.  I can ignore most of the comments but the latter one prompted me to share what I had seen in the files with my younger daughter who showed Elizabeth who was on a hospital ward at the time.  “I did not say this”  Elizabeth was angry –  Elizabeth was on a cocktail of mind altering drugs as always as this is what the care is mainly about in the UK – MIND ALTERING DRUGS.  Whilst on these mind altering drugs the team think they can say what they like and they certainly do – if you dare to complain you get slated in the files and accused of being an unfit mother or words to that effect.  When files are not lost and actually passed on to the next team they can easily get the wrong impression and this can go on and on and on.  The teams are not interested in  meeting you and listening to what really happened in the past to that person.  It is NO WONDER THE CARE DOES NOT WORK.  If the underlying causes of what happened to that person are not addressed it is simple that person will never get better.  The team with all their high qualifications have failed to really address the underlying problems because it is far too easy just to drug someone up, control someone and there is money to be made in this “care” and treatment.  Private sector hospitals are taking over where the care on the NHS is failing people like my daughter and they are raking in the money to provide care of continuance of drugging but in better surroundings and perhaps nicer facilities.  “Whoever thought of this care, Mum – thank you – I hated it where I was”  Well I do not deserve thanks for thinking that my daughter would be better off under private sector care because a consultant psychiatrist did not like me and there is nothing like an angry embittered psychiatrist so I have been told by others who have experienced similar problems.  A psychiatrist and a social worker gets away with a great deal whereas myself and an ordinary member of the public would be prosecuted.  I have never experienced such bullying before but here is a comment from someone in the know –  this relates to the replacement of nearest relatives “I wish I had a £ for every time I have seen attempts made to displace nearest relatives.”  

How about this – professionals who have spent “many years observing faulty drug withdrawals carried out by psychiatrists who know absolutely nothing about pharmacokinetics or dynamics just as the doctors who prescribe without testing for tolerance, contraindications, concomitant prescribing or drug metabolites these people are a menace – and apparently there are loads of them about.   By the way my daughter has been taken off 500mg Metformine a day thanks to me challenging what was going on and my research into contra indicated drugs.  My advice to everyone is not to trust doctors if there is hospital treatment involved in addition as the drugs are being prescribed by two different sectors of care and there seems to be no communication and the GP when challenged could see no reason why my daughter was on all of these chemicals. 

MESSAGE TO ALL CONSULTANT PSYCHIATRISTS

100mg of Clozapine is a therapeutic dose –  how come my daughter is on 350 and how come someone I know is on 800mg?   I have today contacted NICE guidelines about this unsatisfactory situation however I think I need to speak to Mr Lamb and Mr Burstow again as guidelines are not being followed and the only thing that worked for my daughter is not even included under NICE guidelines and that is hypnotherapy – so how come this is available under SOME local authorities?  Why should there be a post code lottery?  Mr Cameron said there is plenty of money to spend as regards the recent flooding disaster but I do not for one minute deprive that going to the flood victims however all this time I have wanted decent care set up in the form of Chy Sawel and still there has been no Government help –  it would not take a great deal especially when you work out what is being wasted right now on care for people light my daughter who are written off like rubbish and classed as being TREATMENT RESISTANT.  I had originally thought this to be ridiculous but I have since had top level advice that apparently it is far from ridiculous  –  in fact there are many people who are  treatment resistant not only to psychopharmaceuticals but to other drugs and not surprisingly as some people cannot metabolize the drugs and no proper tests are given in the first place  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.  I could not agree more with this as I have seen nothing but shocking side effects and suffering of my daughter who has been told she has to take these chemicals for the rest of her life.    God knows what damage this extreme experimentation of so many drugs has done to my daughter but one thing is for sure this team do not care about my daughter’s physical health otherwise they would work towards a solution.

I am now going to share with you the latest on my daughter’s placement.   My daughter is not a risk to society or to herself and has not been for some time and she is soon to be released from section but that does not mean she will be allowed to come home and the reason they wont let her home is because they do not trust me – it does not matter how many times you say you would not attempt to get her off the drugs – they are using this as an excuse – a means of control.  The manager of social serveics tried to say the other day that I did not want her home.  That is far from true but in the past I have not had support in terms of direct payments and a person centred approach failed to provide ANYTHING. I tried to find out what my daughter wanted via hypnotherapy with a top leading hypnotherapist in Harley street so that they would provide something for my daughter but instead they just tried everything they could to stop this from going ahead and yet it benefitted Elizabeth who asked to go again. It was like a miracle – she was like her old self again and everyone was so happy.  I would have Elizabeth home but home is in an environment that is not peaceful – a city like environment and Elizabeth could not even stand going shopping near the hospital where she currently is. This environment where I live could make Elizabeth worse initially as she has not even been let out to the corner shop and suffers panic attacks worse than ever before. After 3 years I thought it would be better for her to go to a farm-like environment – somewhere peaceful before coming home again. However after th4 way Elizabeth has been treated I wonder if home would not be better than where she is now as it is the wrong environment for her also. The whole family were impressed by placements we saw in a country environment different to a hospital or scheme in the community.  Elizabeth did not like one placement but the only reason she gave for that was she met no one – everyone was on “allocated time” – in other words Elizabeth did not really get to see this placement properly and it sounded so good.  However I got a different opinion when I spoke to one of the staff and she sounded harsh and dismissive towards me as a mother when I approached the scheme as I felt that Elizabeth once again was not being treated fairly.  As much as I and the rest of the family liked this and one other different kind of environment to hospital and care home, Elizabeth would have had the family approval as to her decision.  However I totally object social services stating IT WAS MY DECISION.  Undoubtedly I wanted Elizabeth to go and stay there and see what she thought but she has not been given the chance by social services. 

Email from social services:

Dear …………….

Please accept our apology for late reply –  In regards to the …………………………..it is alright for you to make correspondence with them directly as you or your solicitor may have previously done before.  As you are aware I made a referral to them back in October/November 2013 so they still have the details they need to carry out an assessment.” 

This email was dated 19th February 2014 and sent by my daughter’s social worker copied in to her Manager.

My email to them:

“When I last spoke to …………..it was discussed that it could not be agreed to paying for 2 placements ie hospital as well as ………………………….

I said that we as a family could pay for a stay at ……………………but heard nothing since and I would like an update of what is going on and so would the family.” 

As I heard nothing from social services I contacted the placement today and they wrote to me the following:

“I understand that ………………..is happy with her choice of placement and therefore will be moving there in due course.  We do not make a charge for assessment stays at our service.  The confusion may have arisen as hospitals sometimes make a charge to accompany patients to our service and we categorically do not make any charge for overnight stays.  As ………. is happy with her choice of accommodation for her to visit our service Social Services do not wish to pursue the referral to our organisation  I am sorry we cannot be of any further assistance.”

MY RESPONSE TO THIS EMAIL FROM THE PLACEMENT OF TODAY’S DATE:

“I have spoken to ……………at social services.  I understand that they are not prepared to pay for a stay for my daughter in addition to the hospital and I have said that I would be prepared to pay and they said in return that they had already made a referral to yourselves and that I should contact you myself to arrange a stay at your placement.  She spent 2 days only at another placement but yours was the one she really liked and I do not think it fair if  my daughter has not got the opportunity to stay at the placement she most liked.  I therefore wondered if you could accommodate my daughter for a couple of days in order that you can carry out a proper assessment and please let us know how much this will be.  I appreciate you originally said any referral had to come from them but now social services have told me to contact you direct in this respect.  They say that they  have already referred my daughter to you but as I am prepared to pay that the emphasis is on me to deal directly with yourselves.  I spoke to ………………….her social workers.  In the meantime I understand an advocate has been to see my daughter to try and get her decision on the other placement but my daughter told me she was undecided about that and wanted to see what your scheme was like.  I only spoke to her at the weekend as well.”

FINAL MESSAGE FROM THE SCHEME:

Dear ………………WE CANNOT ACCEPT A PRIVATE REFERRAL FROM YOU OR YOUR FAMILY AS SOCIAL SERVICES  HAVE MADE A DECISION TO FUND A PLACEMENT ELSEWHERE FOR YOUR DAUGHTER.  THEREFORE IT WOULD NOT BE APPRORPAITE FOR HER TO STAY OVERNIGHT AT OUR SERVICE – WE CANNOT MOVE FORWARD WITH THIS ASSESSMENT WHEN WE HAE BEEN ADVISED BY …………….THAT ……………..HAS CHOSENTO MOVE TO ACCOMMODATION ELSEWHERE.  AS …………IS MOVING TO ANOTHER PLACEMENT WE NOW CONSIDER THAT THE REFERRAL IS CLOSED AND THE ASSESSMENT PROCESS CANNOT CONTINUE.  AS I HAVE ALREADY STATED …………..(SOCIAL WORKER)..WAS UNDDR THE IMPRESSION THAT WE CHARGED FOR ASSESSMENT STAYS.  THIS IS CATEGORICALLY NOT THE CASE.  OVERNIGHT VISITS AT OUR SERVICE THAT ARE PART OF THE ASSESSMENT PROCESS WOULD BE FREE.  I AM SORRY THAT WE ARE UNABLE TO BE OF ANY FURTHER ASSISTANCE”

I AM SORRY TOO –  I am sorry for all my daughter has gone through – she has not been treated fairly at all by a team of professionals who have created misery within my family.  They think they are above God but in fact God is more powerful than any of them. God has given me the strength to stand up to all of them.

I have been thankful for all the wonderful support I have had from complete strangers.  I have received both praise and criticism but am telling the truth about everything whether people agree or not with what I am doing my motives are of honesty and wishing to see a fairer system. 
I believe honesty is the best policy. If things go wrong with the care I would have appreciated a phone call but instead things were covered up.  When I complained this did not go down well.  I do not think I would work in a profession that is rife with bullying for all the money in the world.

I praise the honest people I have come across and I have had advice from some people because of my openness however I think it is right to be open and honest.  I have been told I should play them at their own game by more than one person but I would much prefer to speak openly and honestly any day and do not want to play games.  I just want Chy Sawel set up on behalf of all the mothers who are in despair at the shocking cruelty going on in the name of care in a so called civilised country.

MESSAGE TO SOCIAL SERVICES

You have won!  all I wanted was fairness – it would have been my daughter’s decision but she had no choice.  You have moved my daughter away but say it was my wish however she had to get away from the local area for more than one reason and you know it.  Now my daughter is disabled to the point she needs 24 hr care – the so called care she has received has led someone who once had a job, once was studying, learning to drive doing normal things to lead a live of none existence.  She is in  bed sometimes as early as 7.00 pm  I am naturally upset as you think you are truly doing the right thing by displacing me as the Nearest Relative which you have attempted on more than one occasion.  This placement has not been done fairly and you as a team have destroyed my happiness as all I wanted was for my daughter to be treated fairly.  If she had been allowed to stay at the other placement which we as a family would have paid for and did not like it and chose the other one she liked anyway that would not have been a problem but like everything that has gone on in this team everything has been controlled and Elizabeth has said “you have to go along with what the team say”  Even the solicitor was replaced –  then the comments “do you really want your mother to be the nearest relative” YOU CAN DISCREDIT ME AS MUCH AS YOU LIKE AND WHY DONT YOU DO THIS IN PUBLIC AS YOU HAVE UPSET THE FAMILY NOT JUST ME.

/p>

The New Psychiatrist:

Actually the new psychiatrist at the private hospital is very nice this time – be bothered to ring me back – it is communication that counts with me but there are certain things that should involve the family and the family are excluded.  When I told him I had sought top expert advice from someone who really knows about the drugs and that a therapeutic dosage of this awful chemical Clozapine should be 100mg which is much lower than what this private sector hospital is giving to which he refused to listen.  A reduction to this level of course would be risky and could throw Elizabeth’s behaviour off balance but if the team think it is the right thing to do to just plod on with the current treatment of my daughter for sake of convenience this is FAR FROM CORRECT and I have supporting evidence to this that I could produce.  At the end of the day social services should not be involved in anything to do with the drugs as they know nothing about drugs.  However it is the scientists who really know the full workings of the drugs and how things should be done properly.

THAT IS WHY WE NEED A FACILITY LIKE CHY SAWEL AS NOONE SHOULD BE WRITTEN OFF LIKE RUBBISH.  NO WONDER PATIENTS GIVE UP.

I have been to the Carers UK conference and nothing has improved.  I even got up to speak and say how it felt like to be treated like nothing – like you are invisible whilst a team play on capacity and confidentiality.  Elizabeth has seen my blog and has even written her own comments on it.  I do not show her my views on drugs as this would upset her however I have shown her the amazing support she has had from complete strangers and she was so happy. 

I hope one day Elizabeth will be well enough to take over this blog and that she will help others in a similar situation but many do not have families to support them and here is a message to all the parents:

FOR THOSE PARENTS WHO THINK THE BEHAVIOUR OF THEIR SONS/DAUGHTERS IS REASON TO TURN THEIR BACKS THINK AGAIN ESPECIALLY IF THEY ARE ON ANTI-DEPRESSANTS OR MIND ALTERING DRUGS.  I WOULD RECOMMEND YOU THE BOOKS I HAE READ ESPECIALLY THAT BY DR ANN BLAKE TRACY – PROZAC PANACEA PANDORA

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I spoke to Elizabeth today who told me an advocate had been to see her. This advocate was talking about a placement that my daughter has been to see. Whilst Elizabeth liked it, she also liked another one but social services will not pay for this and it would appear that the team have come to a decision as Elizabeth told me she had not agreed and wanted to see the other placement. I have offered to pay for her stay there and social services told me to contact the placement myself. In the first instance it was Elizabeth’s wish to come home but the team do not want for Elizabeth to come home and they have said that I did not want her home but the best place really would be the farm like environment – peaceful, natural and better than a hospital or London initially after she has been in hospital for so long. There were problems before locally – unsuitable friends – Elizabeth going missing from the scheme regularly and going downhill in general. Not surprisingly, Elizabeth was on a huge amount of Quetiapine. Anyway, Elizabeth has been stable for some time but is being made to take drugs – what for? For a start I have managed to get 500mg a day taken off her drug prescription. Whilst I visited Elizabeth she mentioned she did not know the name of her GP and when I found out I took my daughter there and queried the prescription of Metformine supposedly given for weight loss but knowingly being given contra indicated. Now suddenly the GP can see no reason why this drug is being prescribed. As regards the Clozapine at 350mg a day I am quite right to be concerned to query all the medication bearing in mind lack of communication whereby files were not sent on from the hospital of full details of the reasons for the Metformine not given. I have seen this kind of thing before where a GP will prescribe one lot of drugs and the hospital the rest and what about my daughter’s physical health – who cares about this but I found out that the drugs are contra indicated and I have quite rightly challenged things.

I have recently been told of the fact that 350 mg of Clozapine is a higher than necessary dose for the management of psychosis in most cases. 100mg of clozapine is recognised to be an effective therapeutic dose So the dose of Clozapine is too high. 100mg should be sufficient to manage a patient, even those who had manifested florid and extremely aggressive behaviour. 350mg and above may be appropriate to address acute and florid symptoms on admission, to be titrated down to the minimum therapeutic dose after the symptoms had subsided. It is laughable that everything in medical intervention is supposed to be measured by the risk / benefit equation – what about the risk to my daughter’s physical health.

Plasma levels are not the same as dose. The 0.35 mentioned here is not 0.35 mg of Clozapine but the measure of serum concentration of clozapine metabolites after its pass through the liver and metabolisation by the P450 cytochromes. There is no accurate determinant of how much the patient may have to take to achieve serum levels of 0.35 and it would vary from patient to patient depending on how they as individuals metabolise the drug. This is a very complex process and is not fully understood. With 50 active cytochromes in each patient all working at different levels of effectiveness it is impossible to be able to fully understand the process except in general terms, in reality every patient is unique. Unfortunately the care does not take that into account all too often as I have seen.

Significant numbers of patients are non-metabolisers or poor metabolisers. That will cause wide variations in the effective dose of many drugs and some will not work at all.

There are many cases where psychosis is caused by endocrine problems. It is very common and history’s most famous patient George III was one of them (Porphyria). A defective thyroid and hypothalamus can manifest themselves in psychosis and the brain itself is a part of the endocrine system. Many patients would benefit from a trip to an endocrinologist. For instance in the case where someone had major surgery on her thyroid – damage had been done to the thymus, the psychiatrist failed to take account of the endocrine disorder before commencing treatment When treated with drugs for the endocrine deficiencies she recovered fully. (those drugs also have side effects of course).

An expert I am in touch with has observed the mechanism by which PTSD might manifest itself (mimic) long term acute psychosis that is mistaken for conditions such as schizophrenia or bipolar. Autoimmune function can be seriously disturbed by shock and many people who have been exposed to PTSD inducing experiences develop autoimmune disorders.

Selyes General Adapational Syndrome is an extreme example of this caused by excessive stress response releasing glucocorticoid hormones which act on the immune sytsem. This can affect white cell count and block lymphocytes in the thymus. The thymus shrinks in animals subjected to severe stress.

Here are a number of papers implication hypothyroidism (endocrinal disorder) with psychosis

Balldin J, Berggren U, Rybo E, et al. Treatment-resistant mania with primary hypothyroidism: a case of recovery after levothyroxine. J Clin Psychiatry. 1987;48:490-491.

Josephson AM, Mackenzie TB. Thyroid-induced mania in hypothyroid patients. Br J Psychiatry. 1980;137:222-228.

Stancer HC, Persad E. Treatment of intractable rapid-cycling manic-depressive disorder with levothyroxine. Clinical observations. Arch Gen Psychiatry. 1982;39:311-312.

Asher R. Myxoedematous madness. Br Med J. 1949;2:555-562.

Heinrich TW, Grahm G. Hypothyroidism presenting as psychosis: myxedema madness revisted. Prim Care Companion J Clin Psychiatry. 2003;5:260-266.

Lehrmann JA, Jain S. Myxedema psychosis with grade II hypothyroidism. Gen Hosp Psychiatry. 2002;24:275-277.

Grozinsky-Glasberg S, Fraser A, Nahshoni E, et al. Thyroxine-triiodothyronine combination therapy versus thyroxine monotherapy for clinical hypothyroidism: meta-analysis of randomized controlled trials. J Clin Endocrinol Metab. 2006;91:2592-2599.

– See more at: http://www.psychiatrictimes.com/bipolar-disorder/hypothyroidism-important-diagnostic-consideration-psychiatrist/page/0/3#sthash.fmNwj8nI.dpuf

The thymus is very much associated with conditions which mimic full blown psychotic illness and if 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.

It is certainly well documented that those with damaged thyroid or thymus manifest psychotic symptoms that respond quickly to endocrine rather than psychiatric treatment.

With all these facts next week I shall be on the phone to both the private sector hospital who are drugging my daughter with a higher than necessary dosage of Clozapine which she did not wish to be on in the first place and the GP who will tell me if my daughter has diabetes or anything physically wrong. If I find out there is something physically wrong then this would explain all along the way I have been treated and why the team were desperate I did not see the files despite having consent prior to admission. My daughter has been on this dosage of drugs for the past few years now – this was the prescription of the Bethlem and all that fuss when the team thought I had missed one tablet of Metformine – now thank goodness I have consent to deal with the GP and sort this out as my daughter is being unnecessarily drugged without any thought for her physical health. What is more with the wonderful advice I have had and further knowledge gained through reading books etc I shall without doubt want further tests done at the Bio Lab and will take my daughter to see more than one expert in the field of PTSD and as recommended, an endocrinologist. I have always doubted the diagnosis as my daughter suffered extreme illness as a child through asthma and was in and out of hospital and still to this day no one has given a copy of the report by the independent doctor. Why should a hospital continue to drug my daughter if the diagnosis is wrong and it is certainly worth looking into that is for sure and this shows that everyone should be observant – in many cases of so called mental illness there could be underlying health problems which have not been properly investigated.

Anyway I am also determined that Elizabeth is treated fairly by social services. It is all down to money apparently why she is not being allowed to stay at the placement she really liked – this is totally unfair and they have made it clear that they (the team) would not wish for Elizabeth to come home and that is because of me. They use the excuse I will get her off the drugs or persuade her to stop taking them but this could be risky for Elizabeth’s health. They just use this as an excuse time after time again when all along my daughter’s life is at risk whilst she is being drugged wrongly. Elizabeth would be better off in a farm environment in peaceful countryside but the placement the team want her to go to is a residential care home. The team know nothing about the drugs – how come after all this time my daughter has been drugged wrongly and all the time she could have underlying health problems which have not been properly investigated. The team should recognise even if they do not like me that I as a mother am looking at risk – risk to my daughter’s health and this is something that is not even thought about at Tribunal level. Risk is only – risk to the public or risk to herself never is risk looked at in terms of incorrect treatment.

Elizabeth wants to see the family and I last went down in January but it is difficult to go down every month – it is expensive having to book into places and the travelling there and back – there is no help whatsoever financially if they move someone miles from home. A hospital environment can still be very stressful whether private or public but the countryside surrounding the hospital is beautiful – the farm where we stay regularly is a place where Elizabeth could get better but I would still have her home however last time there was no support as regards activities or direct payments forthcoming. If they had given a little direct payments this would have been the cheaper option.

Elizabeth would now need 24 hr care. Without a job I would not be able to see her. There is no information, no one telephones to let you know what is going on half the time and I have been trying to speak to the consultant psychiatrist about my daughter. As long as Elizabeth is taking her drugs the team are happy no matter whether this is wrong.

It is shameful what is going on and I have had letters from people via my website who have had terrible experiences not only with the care but with social services. Psychiatrists seem to be a law unto themselves and there does not seem to be observation as to what they are doing – same with social services who should never have got involved in trying to persuade my daughter to take Clozapine.

The worst thing is someone vulnerable like my daughter does not have fair representation when advocates are Government funded, some have psychiatrists on their Board and then a solicitor is doing nothing. This is typical in more than one case from what I have seen. Replacement of Nearest Relatives is rife – it is not just me affected.

Yesterday I went to a nice meal to do with work and today I spent a day at work. So tomorrow will be a quiet day thank goodness.

The other thing I am trying to do is help with the Chy Sawel meeting due to take place on 4 March. I am looking forward to this – we will discuss the business plan amongst other things and I hope that the next meeting will include Mr Burstow, Mr Lamb – the situation is urgent now as we have sons/daughters who need the right kind of care and this is not being provided in the UK. This centre would offer specialist assessments and the emphasis will be on nutrition – this is the care we as mothers want and minimal drugs. It is not impossible and there is the expertise to take someone off the drugs especially if they have been misdiagnosed or suffering from serious health problems. With the help of Dr Walsh who wants 20 doctors to train up, I feel there is hope for my daughter and I thoroughly agree with his book Nutrient Power.

Here are some recommended books that I intend to buy.

Grace Jackson’s book “Rethinking Psychiatric Drugs”

“The Sickening Mind” by Paul Martin. It covers in detail the effects of stress on the Brain and immune system and gives a detailed account of the effete of PTSD on the mind and body. It is quite an old book published in 1997 by Harper Collins but it is very informative. David Healy’s Images of Trauma is also recommended.

Mr Burstow already has the book called Nutrient Power by Dr Walsh and next time I have a meeting I will bring further facts for him to study. Hopefully once we have agreed the business plan of Chy Sawel then we can have another meeting as the sooner something is done the better – David Cameron said that money was no object so I read in the papers recently and the flood victims deserve this however it would not cost anywhere near as much to set Chy Sawel up and he should hear from not just me but all the other mothers and former patients as well. For this I would hope that a meeting room can be provided where they themselves can attend.

I have been busy since I got home letting people know about the meeting to be held in London.

I have had so much information lately and am certain that Elizabeth could well have been misdiagnosed.  I will write more about this later on but for now I wish to reply to a message that Martin L. sent me. 

I did not post it on my blog as it contained personal details however I sympathise –  Martin wanted to know how he could complain about his psychiatrist who he was far from happy with.    I can honestly say that I am very sympathetic but my answer to this is going to disappoint him as I would say that psychiatrists are a law unto themselves and the law protects them.  Unfortunately whenever I have complained I have got nowhere and even when the Chief Executive said Excellent – he was forced just to say “satisfactory” instead.  Well it was not even satisfactory in my opinion.  It is unfortunately true that you rarely get anywhere with the complaints system and the law is certainly not protecting the weak and vulnerable.

I am sorry to  hear Martin of your mother – the most encouraging thing I can say is that I heard from April you can choose a psychiatrist.  I am not just looking for the best psychiatrist for my daughter like Dr Moncrieff or someone from the Critical Psychiatry movement but I want a proper assessment.  I am most concerned about the misdiagnosis of my daughter especially now I have read of endocrinal disorders and that PTSD can be associated with this.  In the very near future I hope to have necessary tests done for Elizabeth to see if there is an endocrinal disorder  –  all this time I would not be surprised if she has been completely misdiagnosed.  I wonder how many others could be affected as well.

So, Martin it is not much longer to wait now until April when you can find a decent psychiatrist somewhere.  Please let me know where as I need a decent psychiatrist for my daughter.

I am very thankful to some of my new contacts on Twitter and enjoyed listening to the radio station broadcast.    Thank you so much Lorraine for sending me all this interesting information and I hope that we can meet at the forthcoming meeting and that you can make the date I sent you.

Thank you also Will for your kind comments.  This makes me all the more determined to succeed. 

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.

Dr Ann Blake Tracy has some very interesting articles on her website and this is one title I had been recommended to read in “Atlantic Monthly”

When I told Dr Ann Blake Tracy what they were doing at the Bethlem mixing Olanzapine with Quetiapine she said “switching someone from Coca Cola to Pepsi Cola hardly gets rid of any Cola problem does it?  – how very right she is.  She also said “But what they do know if they begin switching meds she will become out of control thus giving them more control via sanctions – it is a sick game they play”  Dr Ann Blake Tracy also mentioned that Olanzapine is notorious for causing diabetes and sure enough my daughter’s weight escalated whilst at the Bethlem Hospital and now the GP is waiting for the files from them.  I now have full consent from my daughter witnessed by more than one person and the truth always comes out in the end.  The Metformine is no longer being prescribed as the GP cannot see any reason for this whatsoever.  However the GP said that in about 2 weeks time the truth will be known.   

It would appear that the GP is interested in my daughter’s physical health whereas the hospitals both NHS and private do not care.  If my daughter has diabetes then the family should be told the truth and if two drugs are being given in this way that are contra indicated in any case this could be harmful to my daughter’s physical health.

Mental Health Cop:

I liked the blog very much – here was an honest police officer who was providing a truthful and very interesting blog and I want to see this reinstated.   I am not the only one who feels this way.

The public have a right to know what is going on in the UK especially the truth which all too often does not appear in the newspapers.