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Monthly Archives: February 2014

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.

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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.   

 

 

  

 

My daughter was prescribed this drug at the Bethlem where she had been put on Olanzapine  that they mixed with the Quetiapine which made my daughter extremely confused – “which tablet should I take Mum” –  I had a day at work where I got call after call from my daughter who sounded mixed up and scared –  I could tell they were doing something with the drugs and mixing them and that I know for a fact causes adverse behaviour.   I felt sorry for my daughter and helpless as there was nothing I could do for her.  She had signed an advanced declaration and yet they had ignored everything and she had given her consent to the family to see the files yet suddenly the team were intervening and stating that my daughter did not want me to see the files.  Anyway I noticed that Elizabeth had piled on enormous weight in this hospital and I had read that the Olanzapine was a drug notorious for weight gain.

I visited after this and my daughter seemed very sedated and could barely walk and had to cling on to me and this must have been when they put her on Metformine and Clozapine.   Elizabeth did not want to take Clozapine and made it crystal clear but I do not think she was aware they had put her on this – she was so mixed up and confused.  When I came to visit one day Elizabeth could not cope with running and I know for a fact an emergency doctor was called out as I spoke to Elizabeth on the phone who complained of a strain to her heart.  When I came back to the ward, the emergency doctor had left and I had already asked what they had put Elizabeth on but she did not know herself and said it was a drug beginning with the letter M.  Anyway she verbally gave her consent to me knowing what the drugs were and when I heard she was on Clozapine against her wishes despite a letter from Professor Robin Murray to say a drug free period of assessment I was far from happy and I had demanded to know because Elizabeth did not look well at all.  After this I got a letter copied in by many people accusing me of aggressive behaviour and my time with Elizabeth was already sanctioned but it was a ban.  I have documented previously about the time I was banned in my piece called “Abuse At the Bethlem”.  Anyway Elizabeth has been on Metformine for quite some time now and I am not happy at the level of drugs she is being given and whilst the team have said all along that this is being given for weight loss – I need extra reassurance as I have been looking into this drug and it is for Diabetes Type II.    I have found out my daughter’s new GP and they are very nice and helpful.  Elizabeth immediately gave her consent for them to deal with me as everything is shrouded in secrecy and a team can pretty much do what they like especially when dealing with someone vulnerable and drugged up like my daughter.   I have discovered that the combination of Metformine and Clozapine are CONTRA INDICATED drugs.  I am concerned about the harm being done to my daughter’s physical health by 850mg in total of these two drugs per day.  I have quite rightly queried this with the GP who did not even have all the files.  This is terrible that files are not passed on to the GP who is then going by a previous prescription without anything for them to query themselves.  IN other words if I as a mother and Nearest Relative had not looked into matters then the Metformine and this unsatisfactory combination of drugs would continue to be prescribed forever.  Now that I have drawn this to the GP’s attention the Metformine is being discontinued.  However I am concerned as if this is done too steeply like at the Bethlem it could be harmful to Elizabeth.

I am going to write to Dr Ann Blake Tracy about this and also there is an organisation called APRIL that would know about any adverse effects this could bring about.  Now that Elizabeth has a date in February when she is being released I want things done properly and Dr Ann Blake Tracy states a reduction needs to be done slowly and gradually.  She is quite right as far as I am concerned.

I am also sending to the GP other documents that I have  concerning other important health issues as a GP should know all of this and this should have been passed on.   I am most concerned that the GP was not told of something that showed up on an MRI scan that could be of great importance and I intend to send these documents.

So now Elizabeth will be down to 350mg of Clozapine and because some of the files were not forthcoming the GP could not answer my question “does Elizabeth have diabetes”?  –  in two weeks time the facts will be know as I have queries everything and I am very very pleased that I have done this.  

If nothing is done about any drugs that are harmful to my daughter in light of any such physical health problems I shall personally take some holiday off work to deal with this and sort things out.   

There is research being ignored and some that I had not heard of before that has come to my attention and I reminded the team that my daughter had a NEW DIAGNOSIS now.  I felt as though the team have pushed this aside and it is not just me but the whole family who agree with this new diagnosis of PTSD.  The treatment for PTSD is INTENSIVE TRAUMA THERAPY.  There is no mention of drugging for such a condition and therefore I as a mother want the correct treatment provided and I heard Mr Cameron saying that there is plenty of money available –  whilst I fully sympathise with the victims of the flooding,  there people like my daughter who are receiving the wrong treatment and need a proper assessment and a specialist treatment centre.   Coming off drugs is a very risky business and needs proper supervision especially with what Elizabeth is on and I as a mother want to ensure that everything is done properly as I have heard shocking reports that can lead to permanent damage in terms of health.  After this I am leaving nothing to chance and there needs to be a complete review as far as prescribing and reductions of drugs are concerned as this needs to be properly monitored.  I also want proper testing before the prescribing of drugs to see if someone can metabolize them or not.  None of this is being done properly in the UK and after so many drugs now my daughter’s physical health has been damaged so it would seem.  The GP said that within 2 weeks the facts will be known and I am bracing myself for bad news as Elizabeth was once healthy in terms of her physical health.

 

 

Yesterday I telephoned Elizabeth and could not get through on the phone and had to go through the office.  Today was the same as there was a problem with the charger.  The phone was probably in the office charging no doubt.  I had to hang on and wait to speak to her and wished her a Happy Birthday.  I am pleased the package arrived that I sent but I also bought some chocolates which the rest of the family can bring down however I am worried about these now as I am not sure there is a problem with Elizabeth.

Just lately more than one expert has been giving me advice that I cannot ignore.  I have become knowledgeable myself about the drugs having read so many books on the subject.  At the very beginning I trusted the doctors but then I got to see the effects of the drugs and questioned what they were doing.  I was told by one psychiatrist at local level that my daughter would have to take the drugs for the rest of her life.  However I have one thing that is making me query everything right now and I just cannot allow this to be dismissed by anyone. 

Today I had an indepth conversation with social services about the placement of my daughter and someone is supposed to have several choices.  One place Elizabeth did not like, the care home she did like but what about the other place?  When I got no call back from social services I rang again and questioned this and was told that they would not pay for this place for her to go and stay for a short while as well as pay for the private hospital at the same time.  However we as a family were not given the option to pay for this short stay if this was what Elizabeth liked.  I felt that my daughter had been given no choice and when I used the word manipulation this did not go down well – in fact I almost felt as though I was being mimicked when I said this word.   I will give you some examples of manipulation my daughter has had.

Change of solicitor

“you’ve got to go along with what the team say here Mum, it is very strict”

making contact with me difficult – letter stating supervised phone calls at a time I could not phone

Now the placement as there is no choice.

If Elizabeth had made the choice of the Care Home herself when given choice of the other placement I would not have had a problem with this but I am not happy as I do not feel my daughter has been treated fairly.

Whilst in conversation I happened to mention about the treatment of my daughter and drugs being given which are contra indicated.  I felt as though social services and the team were being dismissive of the report by a highly qualified and experienced psychiatrist of many years.   Social Services are not doctors and neither are they experts when it comes to the workings of the drugs.  So I explained that I had more than one expert stating that Metformin is given for diabetes and I just want the truth.  I have just bought chocolate/sweets for Elizabeth – do I as a mother need to give a special diet for my daughter and if she has such a condition or even the onset of it then we as a family need to know then my daughter should have a complete review of her treatment.

I have asked for an honest answer as every time I have brought up the subject I have a terrible feeling that the truth is not being revealed to us as a family.

The truth always comes out in the end.

Apparantly Clozapine interacts with 600 other drugs and Metformine with 200. 

There is research conducted on adverse reactions to drugs and I have come across some research to do with PTSD which I am most interested in.  In the report my daughter is recommended to have intensive trauma therapy and I as a mother want this provided.

If there is something seriously wrong with my daughter and I will get to find out about it then this cannot be dismissed by anyone.

I look forward in the near future of speaking to Sir Simon Wessely about how to improve the image of psychiatry as well as his advice on the correct treatment for my daughter’s new diagnosis of PTSD and intensive trauma therapy. 

 

   

 

It is Elizabeth’s Birthday tomorrow but I will not be seeing her.  She will be spending yet another Birthday in hospital but she is miles away from home and no one in the family is going down.  I think other family members will go next week but I am hoping that when the weather gets a bit nicer to spend more than just the usual day or two  but by this time Elizabeth may be somewhere else – I do not know where.   Anyway I have sent a parcel of things for Elizabeth which I hope she will get in time for her Birthday tomorrow but today when I telephoned there was no answer.  I have  not spoken to Elizabeth for some time and wanted her to know I had sent something so I had to go through the office and patient’s phone and it turns out that Elizabeth’s phone charger has gone missing.  I then telephoned the Manager and asked if someone could help her find the charger as it could upset the rest of the family if they also could not get through.  It is costly to hang on and wait on the phone for a long time whilst staff go looking for Elizabeth so hopefully this will be sorted out.   There is a new consultant psychiatrist I think but he or she has not introduced themselves to me yet and it is impossible to go down for every meeting but then I have never in the past been included in any case.

I went into a very nice store today on my way home from work called Hotel Chocolate.  They always give out free samples and I am supposed to be on a diet but I suppose one wont hurt however I was tempted not only to buy something for Elizabeth today but also something for myself too.  I am hoping the rest of the family can bring this down when they visit shortly. 

When I think about it I do not know how on earth I would be able to see Elizabeth if I did not have a car and did not have a job.  There is no help whatsoever financially and if a mother or family have no means to go and visit it must be very hard for the patient because not all patients have terrible relationships with their parents.  If I go down and visit it is too far just to go for 1 day and I have to book in somewhere and this is costly.  There is no help and there is no advocacy and I tried so hard to find advocacy for myself but because I do not live in the area the advocates could not take on my case and local carers groups could not help me.  I do not think the advocacy is fair for my daughter either as not one person as far as I know has shown her a report stating a different diagnosis.  I am not happy with this at all and I as the Nearest Relative have had to read this report and the other one I have and this should have come from her advocates/solicitor as far as I am concerned.  I am far from happy and do not feel my daughter is being represented fairly.

Anyway I must ring up social services tomorrow –  it is difficult to get hold of them sometimes and I want some answers to my questions raised last week about the placements.

I have sent some money and hope that the team will buy another charger if this cannot be found and that they take Elizabeth to the shops so she can buy a nice cake for everyone.

Whilst on a local ward I went to Nandos and bought food for everyone to take on the local ward.

The food is supposed to be much nicer on the private sector ward and in my opinon more needs to be done about the food and this is why I want Dr Walsh involved and Elizabeth has agreed to this.  The correct diet and nutrition is vital and I have been recommended some tests to be done with Dr Shaw as well.   It is all the more important that with all these drugs my daughter has the correct diet and if she is on Metformine for instance this especially needs to be looked at in depth and I want to know why these tests that I have paid for costing hundreds of pounds are not available to those who do not respond to the drugs.  Well I am prepared to pay hundreds of pounds more for even more tests to be done however unless such tests are done the treatment may be very wrong and could affect someone’s health.  This is why a specialised assessment centre focusing on nutrition and involving leading experts in the Country should be set up as in my daughter’s case a close watch needs to be given to her physical health which I as a mother feel is being totally ignored.

It is wrong to continue with a treatment when it does not work and when harm is showing as per the private test results I  have had done.

Why is there no centre in the UK when in the States there are several Alternative Care Centres?   Whilst there are therapeutic communities there needs to be something even more specialised as if someone is receiving the wrong treatment that could be harmful to them like my daughter on contra indicated drugs then they will become a burden to the NHS if something is not done.   There could be underlying health problems and there are no proper tests or assessments given under the NHS.  I have had to pay privately for these tests which prove my point.  What I do not like is the way these reports are being ignored by the professionals and this is totally wrong.

 

  

 

 

 

Revelations 18:23-24 – “in the latter days the merchants of Bablylon with be the “great” men of the earth (great, generally meaning rich and powerful)  And that by their “sourceries” would all nations of the world be deceived and that many would die as a result of this deception.  The Greek translation of sorcery is “pharmacopeia”.

Isaiah writes about what we will face as a society whilst John speaks of everyone being deceived by pharmacopeia. 

Isaiah 28:7-8 points out even leaders of religions will be “out of the way” through intoxicating substances.    Isaiah states no one is exempt “they err in vision, they stumble in  judgement” –  he goes on to explain why this will happen to our society “For all tables are full of vomit and filth – No place is clean”   Just look at what is happening today – food is being toxicated with pesticides and other types of chemicals, stripped of nutrition and stripped of enzymes.

On the maximum huge dosage of Quetiapine Elizabeth was emotionless and seemed to be in a dream like state and complained of suffering vivid nightmares during the day.   She was on 750 -800mg which she was forced to take for numerous years – the dosage always raised on hospital admission and other drugs given on top.    The effects of this awful drug were wearing off and serious side effects were being experienced by my daughter who also suffered restlessness –  Akathisia “I feel like I am crawling out of my skin, Mum – please help me, please help me come off these drugs” .  (what could I do –  I am just a mother and have no knowledge how to take someone off the drugs yet social services and the team use this as an excuse to get rid of you as nearest relative).      It was on Cipralex she suffered  suicidal thoughts.  On Aripraprazole she suffered what would appear to be an eating disorder and felt ill after eating every meal.   On all of these drugs she suffered terrible skin irritation leading to scratching her face leaving permanent scars and a further prescription of the drug Lymecylcyn prescribed by her GP on top of a huge quantity of drugs already being given.  To top it all they prescribed paracetamol and Lorazepam – sometimes my daughter was being given 3 drugs at a time.  I had to point out to the GP that the Lymecylyne should not be given long term according to the instructions which I had read and I am not even a doctor and the drug was then immediately stopped.  Psychiatric drugs can shorten life by 25 years or so,  leading to shrinkage of the brain, Tardivia dyskinesia, Neuropleptic malignant syndrome, Akathisia.  When I was at the IOP last year the Dean was giving a speech saying that smoking caused shortage of life however afterwards I confronted him about this and referred him to my leaflet detailing 14 mind altering drugs given to my daughter.   It has nothing to do with smoking –  I know someone in my family who died at 100 and was a heavy smoker.  Elizabeth started smoking on an NHS ward of all places – this was through boredom and stress.  It must be very stressful to be on one of those wards and on the particular ward I am referring to Elizabeth was the only girl amongst about 9 men.  This is totally unsuitable for someone who is vulnerable. 

Amongst some of the interesting correspondence I receive through my blog from various  I could not help agreeing with the comments in one of them  “according to Peter Breggin – drugs cause indifference in the brain and apathy”.  I very much respect Peter Breggin.  He opposed reintroduction of lobotomy in the 1970’s once believed to be good practise.   I agree with my reader’s comments – the drugs are a form of modern lobotomy and especially the fact that if the drugs are not given for too long there is a chance the brain can rebuild itself.  Very true indeed –  I do know of people who  have got better completely and I also doubt the accuracy of some of these labels too.   The drugs can cause suicide –  Elizabeth was suicidal when put on Cipralex back to when she was 19 years of age.

 

WHO CARES?

The fact is unless someone is personally affected no one  really cares –  if the Government cared they would provide the facility for someone to go into but now they wish to silence people and I think this will lose them many votes.  They support anti-stigma campaigns without doing anything to help people like my daughter who have been stuck in hospital for years on end, some of whom are abandoned by their families and alone.  The advocacy is recommended by the hospital and patients are often referred to solicitors recommended by the hospital and then if someone is very vulnerable that solicitor does not bother to go or explain about a report showing a completely different diagnosis.  Where is Elizabeth’s support in dealing with a form for instance.

 

It is when you disagree with the system that you get huge backlash and you are treated like a criminal and can suffer bullying by the team with threats to remove you as Nearest Relative.

One of my readers mentions that if they do not follow protocol these professionals would be kicked out so  bullying is rife in the profession and on huge dosage of drugs anything can happen in a hospital and then what!    I heard from other patients who have shocking cases of abuse that they get nowhere with the legal profession.  I would like to see more accountability as I do know that not all psychiatrists are bad.  I also know you can choose a psychiatrist in April and I would like my daughter to have someone like Dr Moncrieff.

Psychiatry is a great machine to oppress people.  

Advance Statements are ignored –  I am not the only one judging by the letters I have received from others. 

They do not do proper blood tests  B12 magnesium, calcium, folic acid, estrogen level, gastrointestinal causes, under thyroid/over thyroid laboratory tests.  Well I had these done privately twice costing hundreds of pounds and they were ignored by the local team and current.  Now the GP is having to obtain files from the hospital due to me questioning the Metformine and I have full consent to deal with the GP now witnessed by members of staff at the surgery.  A family has a right to know certain things if not everything.  If Elizabeth had diabetes for instance we as a family should be told.

When you stand up for the person you care for a team tries to put blame on you.  They try to discredit you and I was accused of not giving the drugs properly recently.  I have been accused of influencing my daughter when in fact I have backed her decision in the past.  However I know now speaking from leading experts that the level of drugs my daughter is currently on would be very very dangerous for me to attempt a withdrawal and would need expert assistance.  So, this team have given my daughter a life sentence and knew all along all the serious incidents that have happened to her.  They have dismissed the possibility of her suffering from trauma, ignored a report by a professional psychiatrist of many years and that too goes for absolutely everyone involved in my daughter’s care.

I have read the Government wishes to look at physical health well for a start it is not good enough when a GP has to retrieve more files from the hospital to explain why someone is put on the drug Metformine.    It is not good enough to wait until someone has a blood disorder before they take someone off the drugs in the most dreadful manner.  How about a facility such as Chy Sawel that has professional involvement where when in the case of serious physical illness someone can go in to be humanely taken off the drugs.    There are facilities for someone on illicit drugs for instance and any drug withdrawal should be done with proper medical supervision and slowly and gradually. 

The drugs can mimic the mental disorder which may be wrong but when the treatment does not work they still continue the same treatment of drugging at the same level and nothing different is given.  If no proper tests are done in the first instance on complete blood chemistry it is no wonder things do not work.  Such tests are not available on the NHS. 

I know of more than one person cured despite a label of Schizophrenia and now off the drugs completely and that says it all. 

A visitor to the group I go to from the pharmaceutical industry referred to the testing of the drugs that it is only when the drugs are released to the wider public that the full results are truly known –  a reader says “you only need 2 positive tests to put drugs on the market even if you get 40 negative ones.  They test for 6 weeks and many tests are manipulated.

Anyway as regards Elizabeth I believe she is still at her placement being given the chance to try out somewhere different as she is being discharged from Section 3 soon.  However conditions are attached to this and social services and the team are using the excuse that I will persuade her to stop taking the drugs or stop the drugs myself.   A leading expert has told me such a thing would be very dangerous on the level of drugs Elizabeth is on and it would take 4 years to come off them and she would need proper observation and assistance and this is something not given in the UK UNLESS someone has a serious condition such as a blood disorder.    What is upsetting is the team completely ignore you when you say you would not attempt this.

I would agree that the UK is becoming more like something out of book I once read by George Orwell!  Just look at what is going on –  The Gagging Law due to take effect in September –  this is not a free country and I have been elsewhere in the world to see what martial law is like and rationing of food etc.  Well in the UK there are food banks –  people can barely afford to meet the cost of living, the weakest and most vulnerable people are targeted unfairly and as for the benefits system how will this affect my daughter Elizabeth on 850 mg of drugs how can she function.  

The social worker said Elizabeth had not completed a form regarding a prospective placement –  well who is helping my daughter Elizabeth? –  who is supporting her?  – it would appear that no one is really supporting her and that instead of choice of placements Elizabeth is being guided towards just one.  It so happens that Elizabeth does like this placement but in light of the unfair treatment she has received I as a mother wish to see choice and whilst I have no intention of influencing my daughter as regards the placement or drugs –  shame on this Country that the system is so very cruel, rife with control and bullying and I would agree with the description of  one of my readers  “Totalitarian Country” and I would add to this that I believe the treatment of such people like my daughter is AGAINST GOD

I pray to God that he can help my daughter and bring about an end to this shocking abuse.  I pray that the religions of the world take an interest in the abuse going on.      

Anyway now to my weekend.  I have had  a nice weekend so far and have met up with all my old school friends, all of whom have known Elizabeth from a baby.  We went shopping together and had a meal out which was very nice. 

Tomorrow I am going to make some new acquaintances through an organisation I got to hear about on Twitter – Stand Alone.  My case may be very different from others but I am most interested to hear about what others are going through. I know that some mothers who have not read the books I have distance themselves and do not want to know and some of the patients on the ward with Elizabeth have said to her ” you are lucky to have a mother like yours” .   Well I am only too happy to educate some of these mothers myself with the knowledge I have gained from reading so many brilliant books and I hope to acquire more from say Dr Peter Breggin and Dr Grace Jackson.  With lack of understanding of some parents,  it is all the more reason to have open dialogue.  It is also a good reason for a team to take a second look at some of their actions which can result in harm to the family.  Instead of working and communicating together with a family they will resort to taking you to court to get rid of you as the Nearest Relative when you as a mother may have researched the treatment and questioned it quite rightly so.  This is bullying in my opinion. They need to put themselves in my position as a mother and think how they would feel if they were in my shoes as if this was their relative and it would not hurt them to go out and buy some of the brilliant books that are not apparently according to my reader available in the Libraries.  Such books should be available for all to read and be properly educated.

I will telephone Elizabeth tomorrow – it is her Birthday and she will be 26 very soon but I will not be seeing Elizabeth on her Birthday.  I only hope wherever Elizabeth is sent she will be under a more understanding team who do not wish to get rid of me as a mother but wish to communicate properly for a change.  It is all down to communication and if Elizabeth is happy for me to deal with her GP then this says it all.  I am not interested in every detail but I am as a mother interested in her physical health and I do not think that the team appreciate the full facts and certainly they seemed to lack knowledge of some of the research that I have been looking at that you cannot dismiss these facts.  

 

 

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