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These words have been written to me on a piece of paper today by my daughter who I am fighting for right now.

Elizabeth has told me that it has been recent that she has had a large increase in her drugs and I may give Cambian a ring. It is between Cambian and the care home now as the care home manager has told me they have got their records wrong and that he had no idea that I was in fact the nearest relative which points to all the confusion. I find this very hard to believe myself as it is clearly documented and I have the papers so what is going wrong when there is such a “discrepancy” of information or misunderstand amongst certain members of the team and this information must have been put through to the GP. I was told by the manager of the care home that everything should be communicated through him personally whereas I have gone to the GP with my daughter’s consent. Not once has the consultant psychiatrist telephoned me back and I feel it is as though the manager of the care home is protecting certain people and just passing on messages. If a doctor does not communicate with you and you have the consent of the patient then this is very bad indeed and detrimental to the patient’s health. IN Wales the GP took concern about the 500mg of Metformine and phoned me back and acted professionally but I am not finding this at all where she has placed now by social services.

<So the drugs are running out today tea time and the care home manager is flatly refusing to release them for my daughter and insisting on her return to the care home.  I am willing to do over 4 hrs of driving today to collect the drugs from the care home but they refuse to release them.  Elizabeth has complained to me that a nurse has been "putting pressure" on her.  Behind all of this is yet again a further attempt to displace me as the nearest relative by social services with her father.   The care home manager wishes me to return Elizabeth tonight but at the same times says he does not mind if she does not come back to them however he is not prepared to give the drugs he has in case it comes back on him but what about Elizabeth and I have been referred to him by emergency social services as well as the Crisis Team. Elizabeth has said she does not want to go back to the care home and I am prepared to have her live at home as I am so concerned about the additional drugging but Elizabeth is worried about me being in trouble.  Elizabeth is not on a CTO and she is not sectioned and I am not encouraging or preventing her from taking the drugs as I am prepared to go and collect them today.   She has just come off a section 3 after about 3 yrs and is of no risk to the public or to herself but I know full well she needs the supply of these drugs. I am also most concerned that if she goes back to the care home she will be put under further pressure by members of staff, especially now she has given me the name of the nurse who has been standing in as manager but I did speak to the actual manager who was on a course yesterday who he has overall control I don't think he is medically qualified yet he is refusing the drugs prescribed to Elizabeth. The local GP surgery say I am no longer next of kin – (by this I think they mean nearest relative) they flatly refuse to speak to me and it is a weekend and you cannot get anywhere.  This prompted a call by Elizabeth's solicitor to the care home who managed to find out that behind all this was the local social services team yet again – the same team who have stuck together from the beginning and they have accused me of encouraging Elizabeth to stop taking the drugs and this is why I am unsuitable. That is a lie on their part. I may well not be happy about the drugs given but I know that my daughter has to take them and I am not a doctor so there is nothing I can do however I object to the extra drugs being given and the care home say she was already on them at Cambian but Elizabeth has told me there has only recently been a large increase in her drugs – before coming to the care home she was on 500mg Metformine and 350 of Clozapine. The CQC I spoke to yesterday say they will not get involved other than look at records and yet this leaves the question of all these extra drugs and why the entire team are choosing to ignore a report by an independent doctor appointed for the Tribunal even though there is evidence of PTSD in terms of research and how come a team can just stick together like this ignoring any underlying physical health problem. It is because I have complained that my daughter's physical health is being ignored that the team are ganging up against me and I am not imagining things either.

Anyway today I have made every effort to get the drugs Elizabeth needs. I have phoned 111 and I have spoken to operators who have now three times taken all my details. I have waited patiently for a doctor to phone me back which he did. I explained everything to this doctor – I said the care home manager refuses to give the drugs whilst I am prepared to collect them. He is insistent on Elizabeth going back there but the minute she is back she will be put under pressure by staff I know and questioned. The care home manager accuses Cambian of supplying all these drugs – it is the extra drugs lunch time that I complain of and I had no idea she was on so much. The care home manager states he never received the £200 worth of possessions from Cambian – Cambian say they sent them on. Cambian only were prescribing 500mg Metformine and 350mg Clozapine. Naturally I do not feel my daughter is in safe hands at this care home especially when they also accuse Cambian of not documenting correctly that I am the nearest relative and that her father is mentioned as nearest relative and this points the finger of blame at another hospital. It is one word against the other and the manager is profusely defending his staff. So Elizabeth is thanking me for my help – she has been put under pressure to get rid of me as nearest relative yet again and her solicitor has confirmed talks are taking place and that social services are behind it all once again.

In the meantime I have been on to this 111 number and I did get to speak to a out of hours GP who must have contacted the Home Treatment Team who have since telephoned me to say that they cannot help and neither can the emergency social services out of hours number or the Crisis Team either. So much for emergency help.

I am thinking who can I contact next and I need to get hold of a psychiatrist and of course Elizabeth and in fact any patient now can choose their own psychiatrist and the most reliable and honest psychiatrists are involved with a wonderful organisation called CEP. I am going to put out an appeal and I want a full investigation into all this because as the Nearest Relative that the team hate and want rid of I am the one who cares about my daughter's physical health and I am the one who has spent this weekend £1000 on checking her physical health with private Endocrinologist. No-one else has bothered as all they want to do is to overprescribe and drug my daughter and blame one another.

I will let you know how I get on but I have listened and taken advice and tried and tried to get hold of the Clozapine which is not readily available and yet none of these professionals are helping me. This shows that the whole system needs to be looked at and also the CQC cannot help either so where do you turn to – I would like to ask this question to every single politician and have it addressed in Parliament as this kind of thing is affecting everyone if they cannot get emergency help when they need it.

Since writing the above I have just had a call from another out of ours GP who advised me to go down to the local hospital. The local hospital has had tremendous cutbacks and I have read that the trust is being forced to spend over £1m with private providers and B&Bs instead of front line patient care. It certainly does not make economic sense whatsoever. and a ward councillor has said that the Government should look into this immediately and deliver the promise they made that someone with mental health problems gets the sdame level of care and support as someone with a physical illness. However I as a mother having seen the files question whether all along my daughter has in fact got a physical illness but is saddled with a label the team refuse to part with even though there is NO BIO MARKER FOR SCHIZOPHRENIA. THERE IS NO SUCH THING AS TREATMENT RESISTANT. THE GOVERNMENT SHOULD LOOK AT A NATIONAL METABOLISM PROGRAMME AND GIVE PLENTY OF FUNDING TO THOSE BEHIND THIS AS I HAVE BEEN TRYING UNSUCCESSFULLY TO GET ELIZABETH ON A PROGRAMME FOR THIS TESTING P450 CYTOCHROME AND PATIENTS LIVES ARE BEING PUT AT RISK AND MEDICATIONS PRESCRIBED UNNECESSARILY PUTTING WHEN THEY CANNOT METABOLISE THE DRUGS. Now I as a mother am far from happy and I cannot accept that everything should take years and years on end to put right. When my daughter’s life is at risk and I have proven drugs are being overprescribed then it is right that I should wish for something to be done right now and with all the closures of NHS services this is not unreasonable as money could then be saved for the NHS. Now I have to go down to the local hospital that has suffered closures of A&E and have no idea if they can help me or not and then I have to drive to a neighbouring hospital to see if I can get the drug Clozapine for short supply. I have spent nearly all morning on the phone trying to sort this out. This is far from satisfactory and I wish for this to be addressed as a matter of extreme urgency. When no one can help you I have no choice but to send the link of this to all the top politicians so that they can get together and sort things out.

I was just out driving with Elizabeth when the phone rang and I pulled over to take the call and it was the Manager of the care home who apparently was on a course all day today.  He had been approached by the Emergency Duty Social Worker today and the social worker did as promised and had a word with him.   The Manager of the care home is in complete denial of the fact that a member of his staff approached Elizabeth and suggested she replace myself as mother with her father as the nearest relative.  Elizabeth has complained that pressure has been put upon her and I think this is appalling.   There is no way that Elizabeth would lie about this and has mentioned the name of the nurse hence I feel uncomfortable about her returning to the care home as she could be faced with problems and who knows what goes on behind closed doors.  Prior to all this I was reasonably happy until I saw the drugs charts and there was much more on there than just the Clozapine 350mg.  The Clozapine I realise cannot be stopped  so I have done my best to try and resolve the situation and have spent a good deal of my time today on the phone to social services and the care home/crisis team.  The Crisis Team could not help – they  referred me to the care home and I was prepared to drive down there which would take four hours in total and I would have gone all that way for nothing if the drugs were refused. I told the duty social worker that I wanted assurance that the nurse would release the drugs.  The Manager of the care home would have the powers to do this. However I have just spoken to the manager  and he has flatly refused to release the Clozapine.  He totally denied that a member of his staff had been talking to my daughter about  displacement of myself as nearest relative with her father.  He said he didn’t know I was the nearest relative and that Cambian had recorded that I was not and this conversation was witnessed.  If the files are not read properly or recorded properly then this is a very dangerous situation. Anyway I could not argue with him as he was not going to budge on the subject. The bottom line is that no way would he be giving my daughter the Clozapine she needs for the evening and Monday  morning medication.  This is bad and the crisis team told me they could not get hold of this drug and therefore referred me back to the care home.

All of this shows unreasonable behaviour by the team and not me as I am willing to drive 4 hours to collect the Clozapine but I am not happy about my daughter going back to this home where they have been questioning her in such a way and putting pressure on her and Elizabeth has told the family she is not happy but she is worried for me that I will get into trouble.   The care home manager said that he had no problem  if she did not want to go back there but he did have a problem in releasing the Clozapine.   The solicitors who telephoned the care home said he was not giving out any information/being helpful  – however the solicitors are acting in my daughter’s interests here and eventually he was in contact with social services themselves and had been pointed in the right direction.   I am not asking for a whole large batch of drugs – the essential ones of course are Clozapine and  this is a very unsatisfactory situation.  I cannot think of a mother who would wish to take her son/daughter back to somewhere where you are told on the phone you are not the next of kin and her father is now the next of kin and hearing from my daughter that  a nurse under the home has approached her to ask about replacement of me with her father.  All of this of course was denied by the manager of the care home who tried to make it look like a misunderstanding –  I have weighed up the situation very carefully and it is a very real situation indeed.  I recognised the name of the person I spoke to today from the emergency social services as being someone I had met once before but he did not remember me.  Well I have a good memory and I can even remember what this person looked like and where I met him.  There is no way on earth I have got anything wrong at all.  The pressure on my daughter to go along with suggestions put to her could affect her health and make her stressed out.  I cannot take that risk by returning her on Sunday like I promised but then she is not on a section or CTO – she is complying with the drugs and is not aggressive or risk to herself or others – nothing like this at all.

If I was to take Elizabeth back and leave her there I would feel very uncomfortable as a member of staff has been named by her.  I will do my best tomorrow without help from the Crisis Team or anyone of these emergency staff to ensure that my daughter does receive the drug she has to take on Sunday evening thereafter.

 

 

Today I had hoped to take Elizabeth out somewhere nice but the weather has been so bad.  Elizabeth has been tired today and asleep and has had plenty of rest.  I have been up bright and early as I had shopping to do and I needed to buy some new clothes for Elizabeth as she has put on quite a bit of weight due to the drugs.  She has an enormous appetite like never before.   Anyway after the dramas of yesterday it has been peaceful today and I have had to ring again the emergency social services and they suggested I ring the Crisis Team which I did as I know I will need a further supply of Clozapine.  I also phoned the care home and was told the Manager was on a course and a message had been left for the manager to contact me.  After speaking to the Crisis Team they suggested I phone the care home as they could not help me with the Clozapine.  They suggested the care home send a supply of Clozapine to me but that was refused and I said she needed some for Sunday.  In response the care home told me I had to contact the Manager on Monday – well what good is this!  I then had to ring the emergency social services again and they also referred me to the care home and told me to go down and pick up the drugs.  Well I then said to the duty social worker that I could be driving for 4 hrs or more all the way there for nothing if this nurse who was put in charge refused to release the drugs and then that would be a waste of time so he did in the end after I had pointed this fact out telephone the care home and said he would get back to me once he had heard from the Manager who has to give this consent.  I do not know what I am going to do if I do not get a call back as I am not prepared to drive for miles on end to be told by whoever is in charge that I cannot have the supply of drugs at all.  I need this confirmed first and I have done everything properly and everything as the emergency social services suggested to me.

I am amazed that it is so difficult to get this drug and I know that this is needed for Elizabeth –  she has not needed any extra drugs since staying with me and she has had a relaxing time staying with me.   If I had not received such an approach stating ” were are not speaking to you – you are no longer the next of kin”  I probably would have taken her back.  However I am very pleased that I checked everything out as there seems to be a lot going on behind my back right now.

I would like to see Open Dialogue in the UK as I believe this is the way forward –  it is wrong to use a vulnerable person putting pressure on them in such a way that I as nearest relative will be displaced when I am not refusing the drugs – my complaint is hearing what I heard yesterday and the extra drugs on top of what I thought was the only prescribed drug – Clozapine – in other words I am concerned they are over-medicating my daughter and have already been told that the 350mg of Clozapine is rather high.  It is not doing her any good if she is in bed so early and having to sleep in the afternoons and I don’t see anything therapeutic in this drug whatsoever – however I do not mention this to Elizabeth so there is no excuse for anyone in the team to say that I am encouraging her to stop taking the drugs or putting words in her head.  It is not me who is putting words in her head that is for sure.  I am the one who is concerned about physical health whereas others are not.  I am the one who wanted the Endocrinologist appointment and P450 Cytochrome tests and I hope that by speaking openly and honestly about this something will be done to ensure improvements for everyone.  I have plenty of patience in dealing with this kind of thing – although I wish I had more time but there is expertise in this country and there are good professionals – you only have to look at the CEP (Council for Evidence Based Psychiatry).

 

Yesterday I decided to phone the care home as I have noticed they are giving what seems to be a lot of extra drugs on top of the 350mg of Clozapine which I am told is too high and should be 100mg for a therapeutic dose.  I have already complained about what I see as over-medication and showed my concern for Elizabeth’s well being.  The care home responded that they would be having a meeting to discuss all of this but then I heard nothing and not once have I ever been invited to any of the meetings or the rest of the family come to that.   When I was told by a new member of staff that the drugs were nothing to do with them and were being prescribed by her GP I then telephoned the GP.  “you are no longer the next of kin” I was then told.   I was shocked by their response – all I wanted was the team to have a meeting that included the family to discuss about my daughter being on minimal drugs.   I could not get hold of the Manager and he had not returned my calls hence my last strongly written blog called “communication”.    I think communication is very important and I have found that very lacking with the team as they do not include you.  Well I was not outspoken to begin with –  I have never felt that the drugs were the answer and Elizabeth should never have been put on so many.  These drugs have done nothing for her and my concern is for her physical health well being.  I have not been impressed by the GP’s strict 10 minute only policy.  I did not come across that with the previous GP in Wales –  Elizabeth did not know who her GP was and I was very concerned about the prescription of 500mg of Metformin a day – knowing this was contra indicated to Clozapine and I queried this and Elizabeth was with me at the GP surgery in Wales and gave me permission in front of staff in that I could help –  after all Elizabeth was not allowed out on her own and would not have been able to pick up the phone and dial the GP let alone her solicitor who never came near her and who called my solicitor a “dick head”  –  this solicitor was recommended to my daughter by Cambian who approached her and said “it would be better if you have a local firm as you are in Wales now” – these were the kind of words used and the solicitor never wrote back to my solicitor and this just ended up dragging the procedures of the Tribunal out making it lengthy.  When someone is highly sedated on drugs it weakens them and they do not have the strength to pick up the phone and deal with issues like this – that is why so many end up institutionalised not because they are a risk to the public or risk to themselves but simply because they cannot face having to go through a tribunal or dealing with even phone calls for instance.  It does not help either in the case of some patients who have had their phones taken away and discouragement in contacting their families – ie coercion.

Getting back to the care home –  I saw three packages of drugs marked “morning”  – “lunch time” and “Tea time” – it was the lunch time drugs I was questioning – these drugs were marked for “aggression/agitation”.   Well Elizabeth is not aggressive – she is on Clozapine last resort drug.     Elizabeth does suffer from anxiety but there has been no need to take these extra drugs whilst she has been at home.  Elizabeth has not suffered from anxiety as I have not been pressuring her to go to places where there are crowds, I have not been pressuring Elizabeth at all and she has had no need whatsoever for these extra drugs.  It was the extra drugs I have been complaining about and my worries for her physical health that I have accused the team of not caring about because all they have been doing is continuing the current drugging regime and what is more is that under this care home there would never be any review.  Elizabeth is young compared to most of the people in the care home –  there is 1 other person – male who is around the same age but hardly ever there.  Inside the care home it is spotlessly clean and the staff come across friendly – any inspector would give them full marks for an inspection and of course Elizabeth has been used to towing the line – ie when you are surrounded by staff you end up going along with things.  She has been complying with the drugs and knows this has to and she has not given the staff any problems.    I have also not up until now had any problems with the staff there and have even written a glowing report about them and how pleased I was with the services that was up until now.    Referring to the extra drugs I asked Elizabeth was she given these every day and got the impression they were dished out frequently –  the Manager had previously told me that they were given as and when Elizabeth needed them and of course I am against unnecessary extra drugs but I got the impression they were given more frequently and regularly and I am concerned about this.  For instance Elizabeth mentioned one member of staff there who I do not wish to name on my blog.  This member of staff said words to the effect “these drugs have been prescribed as when you came back last time from home you did not look too good and that the drugs were needed” – ………….words to this effect – this made me think back to Cambian where nursing staff tried to discredit me for missing 1 metformin tablet when it was not just me who had her but the rest of the family and also they commented along the same lines that Elizabeth came back to them looking stressed out.  I think this is go bad –  the truth is that Elizabeth has not need one of the extra drugs.  She has not been denied them by me but has not asked for them.  The truth is that Elizabeth has been no trouble at home, I have not even  had to remind her to take the drugs.  I see Elizabeth has started smoking since going to the care home – in the garden it is very pretty but this is like a smoking area.   Whilst under Cambian she had stopped smoking.    I heard she had been taken swimming – the OT at the care home had taken notice as I mentioned that if they had a swimming group this may be good for Elizabeth and that I would pay for any extras.

Anyway, I had a friend who came to visit me yesterday who has been through a lot – the friend like all of my friends is not someone who would give Elizabeth bad advice – in fact this friend could not have given better advice and how this person stayed away from drink/drugs – did not copy others and looked to keeping healthy and getting on with her life.   It is good for Elizabeth to hear how someone has recovered and getting on with their lives.

The care home have a nice lounge with TV and a communal kitchen – Elizabeth has a nice bedroom there.   The location is urban not countryside so there are shops and good facilities and bus routes nearby however not once has Elizabeth ventured out.  After 3 years in hospital someone can become dependant and completely lose confidence.   The people/residents under the care home seem nice however that is not the issue here.  When the manager does not return your calls, when no one in the team wants to work with you and excludes you, when extra drugs are given despite you bringing to the attention that the level of drugs is too high.  That is where they should be holding a meeting to discuss about doing what they can with Elizabeth’s physical health.    When I phoned the GP surgery they did not want to deal with me – the GP was out.  When I phoned the care home they referred me to the GP and said if it was a complaint about the drugs it was nothing to do with them but I should contact the GP.  Anyway a firm of solicitors telephoned the care home and told me that the manager did not seem helpful and forthcoming with information.  Finally he managed to find out that it was in fact all pointing in the direction yet again of social services.  Apparently instead of holding meetings about my concerns as to the wellbeing of my daughter on all these extra drugs it would appear that discussions are on-going about getting rid of me again as the nearest relative.  All this has been going on behind my back by the local social services team and I am not the only one being bullied by social services.   The team is the same that have been around from virtually the start of Elizabeth’s care.  The reason they do not like me is that I have had good cause to complain.  I have complained about serious incidents not only under hospital care but care in the community and once you complain then they do not like you.   If they had been helpful from the start and done what they could to assist I would have had no complaints but there is no openness or honesty with these people and whilst I was being open and honest with them, social services were being the opposite.

 

Anyway I have sought advice as Elizabeth who wanted to come home in the first instance was denied this by social services.  Social services pointed at the fact they did not want her to come home but they have no grounds to accuse me –  members of the team have tried to accuse me in the past of encouraging Elizabeth/influencing her to stop taking the drugs and this is untrue.  It was always Elizabeth who had complained of the side effects who wanted to come off them but I am not qualified to do things properly and nothing has been done properly as regards a withdrawal before resulting in failure and then Elizabeth has been told that she has to take the drugs for the rest of her life. 

 

I have been challenging the diagnosis and this is another reason the team do not like me.  The social services have dismissed a full report by the independent doctor and trivualised the contents therein.  Elizabeth had been denied sight of this report which recommends a very different treatment to what she is getting – intensive trauma therapy”  and it does not recommend Clozapine and this drug is not recommended for PTSD as I have looked up NICE Guidelines so again I have had cause to complain as they have not only excluded myself but they have treated Elizabeth like she is nothing by not being honest and open and giving her a copy of the report with new diagnosis.  All of this led me to seek further Professional advice at top expert level and from people who know better than most GPs and psychiatrists as to how these drugs work – how to safely withdraw someone and this has led me to question the knowledge of the medical profession in general when no one had heard of P450 Cytrochome tests and I then tried to find out where could I get such tests done as it is so important – if my daughter cannot metabolize the drugs then she should not be on them as this could be harming her physical health.  I believe these important tests should be readily available and I know of a university where there is a programme of these tests going on so I tried to get Elizabeth on this programme but the Professor concerned is out of the country.    The GP had not heard of such tests and the consultant psychiatrist does not want to speak to me so this is not a good situation where you have to pass messages through the care home manager  to the consultant psychiatrist and then the care home manager has written to say that I should communicate directly with him however I am now thinking that in all this time there must have been meetings going on, perhaps the centre of the meeting is their discussion on how to replace me yet again with her father.   I have accused social services of causing a rift in the family, putting my younger daughter in a position between myself and her father who lives a distance away and is working full time as I am now.  Anyway I wish to share the following about Nearest Relatives: 

“Husbands and wives are equally on the hierarchy of NR’s where offspring are concerned, both in the highest category (a) of section 26 MHA 1983.  Notwithstanding the general rule that persons higher up the list take precedence (not applicable here) where a patient ordinarily resides with, or is cared for by a relative before admission to hospital that relative is the nearest relative of the patient.  The legal authority is Re D (Mental patient: habeas corpus) (2000) 2 FLR 848.  He therefore can only be NR if he is involved in direct care and if he was so at the time of her admission.  They will of course try to invoke the test of unreasonableness on your part.  If your ex-husband is ‘appointed’ by the treatment team by operation of S26 MHA you can object on the grounds that he is not in the best position to act on your daughter’s behalf.”

This is all a terrible waste of public money – to apply to court, to have to allocate more solicitors – what a waste of public funds.  If I as a mother was going to take her off the drugs and do this myself fair enough but that is not the case I am not qualified and know Elizabeth cannot just come off them.   Whilst I thought a country environment – farm with animals was a better environment but Elizabeth  has not been sent there and I thought a therapeutic community would be more natural.

I am now looking at the local paper and on the front page is featured “Mental Health Patients Being Placed in B&Bs.”  – one of the reasons I thought it would be better for Elizabeth to get away from the local area was because the care had failed and serious incidents had occurred however to my disappointment I discovered there was even more shocking care elsewhere but I will now feature some of this article about the local area:

 

“Hundreds of patients being discharged into bed and breakfast accommodation to free up mental health services each year as a result of toxic combination of spending cuts and increasing demand.  There is a figure of £264,000 on discharging patients into B&Bs for 36 days on average spent over 2012/13.   The trust has spent 11 times more on placing patients with private providers compared to 2 years ago.  The budget increased from £89,000 in 2012 to just under £1,000,000 during the first ten months of 2013/14 with an average between £440 and £530 a night spent on securing a single bed usually with private health firms The Priory or Cygnet.  So now the massive increase in use of external beds has resulted in the Trust having to cut the number of inpatient services by a third over the past 5 years whilst demand has increased.  One councillor who I do not wish to name in this blog states that he is disappointed to see the trust being forced to spend over £1m with private providers who are making a profit from the NHS.  He quite rightly goes on to say that the money should go into front line patient care and that it doesn’t make economic sense.  He urges the Government to immediately look into the funding and deliver the promise they made that someone with mental health problems gets the same level of care and support as someone with a physical illness (HOWEVER I WOULD GO ONE STEP FURTHER THAN THIS – PERHAPS THE MH PATIENT HAS A PHYSICAL ILLNESS THAT HAS NEVER BEEN FULLY INVESTIGATED AND PERHAPS THEY SHOULD HAVE BEEN REFERRED TO AN ENDOCRINOLIGST AND HAD THE LATEST TESTS DONE AND MOST ACCURATE ONES WHICH UNFORTUNATELY I DISCOVERED ARE NOT AVAILABLE IN THE UK AND AM FINDING OUT ABOUT THIS).

 

In their defense the Trust said B&Bs were only used for patients who had been clinically assessed as ready for discharge –  however I would point out there were times that Elizabeth was discharged and she was in no way well enough to be discharged and just dumped into her scheme into the community without any extra support.

The spokesman said that significant pressures on services recently has been seen – no wonder why if the care is all about enforced drugging without looking at someone’s physical care – no wonder why the care in general is not working for everyone when patients are not given consideration and are told they face a lifetime of drugging –  this is abuse in my opinion and allowed by law to go on in a so called civilised country.   The try and say they attempt to locate a bed with another NHS provider firstly before looking at the independent sector and that B&Bs were only temporary.  Well the CQC have given them a warning when they found seclusion rooms being used as bedroom but the mental health trust now says that this is no longer being done. 

 

Well before all this became headline local news I could see the scenario of revolving door with Elizabeth being admitted time and time again and seeing the same faces back on the wards. 

On a ward the main care is drugs and with money being wasted not just on this but drugs to patients who may not even be able to metabolize them as there is no national testing programme in the UK – this denies lifesaving drugs to those who do need them for physical conditions as they are too expensive.  Money is being wasted on pushing drugs to my daughter and Clozapine is not a cheap drug and could lead to long term serious health problems if she is left on them for the rest of her life like the team see fit.  Plus all the extra drugs being given to Elizabeth right now on top –  what is this all doing to her physical health when she was a trauma victim.  As with many people under the MH they are victims of trauma and the drugs do not work for everyone but there is no choice and staff can be brutal by forcing a patient to have an injection rather than take the drugs.  One of the members of SOAP group Jean Cozens is a shining example here of someone who due to enforced drugging and level of drugs to the point she could no longer enjoy life ending with her taking her own life –  members of the group recently attended the Inquest.  So giving drugs to a treatment resistant patient is a waste of money and also much money is being wasted by social services by taking people like me to court and displacing nearest relatives.  Just think about it the solicitors are appointed by the council – the patient has a solicitor and the nearest relative has a solicitor and things can drag on and on and on depending on whether a patient is supported properly by his/her solicitor – a good solicitor would make a point of visiting the patient and instead of waiting for someone to telephone them especially when someone is vulnerable like Elizabeth.

 

Anyway to think this is going on for a third time whilst the team desperately try and replace me again when they could point the finger at me accusing me of being a danger to the patient – however by the way Elizabeth is not on a section any more – she is also not on a CTO so therefore she is free to do as she wants.  Her first wish was to come home but social services said no to this however they did not seem to mind her going to her fathers home – they cannot deny her leave as there is no grounds to do this.  I am not a risk to Elizabeth –  she does not return to them in a stressed out state – I would accuse the team of once again sticking together using tactics that amount to coercion.  When things are in such a mess locally the team should be looking at ways in which to save money not waste money.    Now they are all in discussions so I heard – these discussions are no doubt centred on myself rather than concerns to do with.

 

Anyway,  at the end of the day I finally got a call from the manager of the care home but did not realise he had left a message.  I have not spoken to him yet but spent over an hour trying to get through to emergency social services.   I have to praise the person who took the call and how she dealt with me –  I wanted to speak to someone there as Elizabeth has expressed her desire to come home.  It is no good if a team are questioning Elizabeth to choose between mother and father who by the way are on good terms and cause trouble in the family – this is what has been going on since the Bethlem and Cambian and now the care home – unbelievable!  What a nurse should be asking a patient is “how are you” – “are you OK” “is there any problems with the drugs”  “is there any problems in general”  – instead the nurse is asking Elizabeth if she would prefer her father to be the nearest relative which puts pressure on her and causes upset –  if this is what this team are doing then it is not doing her physical health any good to go back there and if it is Elizabeth’s wish to come home and she is of no risk to herself and others then this should not be a problem and would save money to the local council who are wasting a fortune by the looks of this front page article.

 

Yesterday I contacted the CQC  – they virtually told me there was nothing they could do apart from look at the records to see if they were being kept OK –  well what good is this!  there is far more to looking at the records and the CQC also do not investigate individual complaints even if they are serious and even if you point out there is more than one patient complaining of human rights.  Still the CQC do nothing whatsoever.

I was then advised to complain about social services by the CQC as though this was mainly their responsibility when I am in fact complaining of the extra drugging in the main.    So I was not impressed by this but not surprised at all.

I then wasted an hour trying to get through to the emergency social services to tell them what had happened and that I was most concerned as to what was going on and Elizabeth’s well being not only that she expressed her desire to be at home again.  Well I could not get through to them.  I will try again today. 

Now suddenly this care home manager has left me a message and I have not got back to him as yet.    There is suddenly a new person working there who told me to complain to social services – for all I know he could be part of social services keeping an eye on things but I am just assuming –  I responded that I was not on good terms with social services that they had tried twice to replace me as the nearest relative and that I had nothing to say to this team –  they should be the ones to get in touch with me and communicate but do not bother.  Even if you do not like someone you are paid out of public funds to communicate –  one of the reasons I so wanted to go into the Police Force was to communicate and work with those with mental health conditions as I was shocked at how I saw them being treated by professionals and I am not saying that all professionals are bad.

 

So now I have quite a dilemma –  I know that if I do not return Elizabeth to the care home social services will spring into action and I will get court papers sent to me by email like last in front of all my work colleagues.  On the other hand now that Elizabeth has mentioned a name of a member of staff who I would accuse of coercion I would be concerned for Elizabeth’s wellbeing if she was returned to the care home even if this manager gave me all the assurances in the world. 

There is also the issue of the drugs which will have run out by Sunday – the day I am supposed to take Elizabeth back. 

I would like to share this with everyone to show what is going on in reality behind the scenes and this is money being wasted  simply because the team do not like me.   People may think well she has herself to blame by her blog for instance I have been accused “she is not helping herself”  – there you can see that these words were said not to me but to my daughter.  “do you really want your mother to be the nearest relative” said the consultant psychiatrist at Cambian who left by the way and I found out that this consultant psychiatrist is also a GP so someone told me.   I did not have a blog in the first instance and this has come about as a result of my despair by what I have seen.  I find I am not alone in this despair and my reason for making this so open and honest is because I feel this is the way forward.  Forget anti-stigma campaigns if things were brought out in the open then there would be no stigma – it is secrecy and sensational press reporting and ignorance that cause stigma.  Anyway these campaigns are not doing anything to ease the overwhelming failure of the care system for MH patients and inhumane treatment of patient allowed to go on under the law.  These are human beings at the end of the day and can respond if they are treated well in a positive manner.  I am impressed by the intelligence of the former patients I meet up with and like I say many have been abuse victims themselves and getting back to the Metabolism Programme – if these tests were on offer then it could be the best solution of all as if this is ignored and patients continually drugged concomitantly with say contra indicated drugs for instance not only will their physical health decline but the adverse reactions in terms of behaviour could be the very cause of interactions from drugs that a patient is routinely given and kept on – that is why the system is not working and much money could be saved to the NHS rather than wasted on drugs that do not work for a MH patient who is ignored by the team as Elizabeth is. 

 

Well I am not criticising all consultant psychiatrists as there are good ones to be found on the website of CEP (Council for Evidence Based Psychiatry)  Also there was one good social worker at the Bethlem Royal Hospital and the social workers for my father who had Alzheimers were brilliant so as you can see I have come across good members of staff plus the junior nursing staff at the Bethlem and a couple of nurses who escorted Elizabeth to visit me before Xmas when the consultant psychiatrist denied leave over the Xmas period to the entire family. 

Anyway I will make a further attempt to contact social services emergency out of hours today and the care home unless the out of hours social services themselves wish to contact them. I would otherwise have taken Elizabeth back on the Sunday but now the situation has changed when I feel that this culd cause her stress and health problems if she is being questioned by her nurse about replacement of me as Nearest Relative yet again and that the risk is too great for Elizabeth – what is more, she expressed her wish to come in front of friends but was also very worried that there could be trouble for me and a vulnerable patient like Elizabeth should not be put under such pressure by a team who simply want to get rid of the nearest relative when there is no reason for this – I am the only one who is caring for her physical health by the looks of it whilst the team are pursuing their wishes to see me displaced with her father. I would conclude that this is a very nasty situation by people who are meant to help and assist not drag parents to court when there is no risk. It is a good thing that I am bringing this out in the open as I know of others affected.

 

 

 

  

 

 

 

 

I seem to be having more luck with communication via social networking than with the team these days.

I am still waiting for a phone call from the Consultant Psychiatrist and the GP. I may have to ring again. The care home were meant to pass on my messages and the last I heard they were having a meeting. Well I have not yet received my invitation and that was some time ago now. Communication works both ways and I have always been open and honest with the team giving them information but this has not been reciprocated. This is why I am in favour of Open Dialogue because when you are excluded and not kept informed then not only is this not very nice but not beneficial to the patient.

Anyway I have phoned the care home twice to ask their permission out of politeness that Elizabeth comes home this weekend. I was not able to have her over the Bank Holiday. I am waiting to hear if that is acceptable even though Elizabeth is not on a Section any more I would never just not bother to inform anyone in the team as the drugs need to be made available – until her treatment is revised there is no way that anyone in the family would try and intervene in a change in treatment as when it comes to the drugs I am not an expert and this would need specialist help. However, I question the expertise of some of the immediate professionals when they just plod on and continue when I have presented them with facts from someone who is a top expert. There was barely any time to discuss anything with the GP as only 10 minutes was allocated and I had never come across such a ruling before. I have sent on to the GP some very important medical records that they did not appear to even have.

Now there is the mystery of where the oils and the supplements disappeared to. How can a big box of supplements disappear into thin air. If these are not found I shall be issuing a bill and am waiting for Cambian to ring. It is no good them saying that they were sent on – where are they then? I may be a long way from Wales but Head Office is on my doorstep. The care home say they have not received the supplements so this is now down to Cambian and if Cambian have not got them then the question is did they actually get sent on from the Bethlem however I do know that the oils did. Aromatherapy oils that according to Eliabeth worked better than any single drug and they have disappeared into thin air! I am quite prepared to drive to all three locations. The private psychiatrist prescribed zinc, fish oils, B12, Niacin and vitamin C. Well I have found plenty of the B12 which I must ask the consultant psychiatrist to include but now they have asked me to supply the fish oils and I am not happy as they have gone missing – why should I have to supply these after so many things have gone missing costing hundreds.

Anyway, enough of this I am extremely happy with some new connections I made through my website and I spoke to one of these last night and I have purchased her book “Wonderfully Strange” this is by Becky Shaw by the way and what a remarkable person she is. I felt honoured that someone had contacted me who could really identify with my daughter’s case and see things from my point of view through again experience of her own family. I felt inspired by listening to her account of recovery and I have no doubt so would Elizabeth. This is someone who I believe could really help my daughter – someone who has gone through so much and come out on top. I can only hope that will be Elizabeth one day. I hope to meet up with Becky Shaw soon if she comes to London. Also via Twitter – I was contacted by a group called “Heal the Regulators” – apparently they are going to the BBC -not sure yet if I can get time off for this but I know lots of people who would like to speak to the BBC besides myself.

Another contact I made via my website has told me of the shocking fact of her son being offer £40 for trials at the Bethlem. I am not against clinical trials taking place but they should not be on offer to the most vulnerable patients – ie my daughter did not even know she was on Metformine or Clozapine and it is all well and good the team saying she agreed – how can they explain this – she signed an Advanced Declaration before going in to that Research Hospital against going on Clozapine and so they are in breach of human rights as far as I am concerned. These clinical trials should be advertised and I am sure they would be paying more than just £40 if they did this properly.

Also they have been offering unlicensed drugs – the Metformin was given off label for weight loss for example.

The spray someone else I know was given is also off label – this is the spray below and details of it:

Researchers Launch Study with Oxytocin Nasal Spray
A large clinical trial will test the safety and effectiveness of oxytocin nasal spray to improve sociability and communication in children and teens with autism. The federally funded clinical trial follows the promising results of a pilot study funded by Autism Speaks. The researchers hope to recruit 300 participants, ages 3 to 17, at centers in Boston, New York, Seattle, Nashville and North Carolina.

A naturally occurring hormone, oxytocin plays a critical role in sociability and affiliation. In the Autism Speaks-funded pilot study, researchers administered oxytocin or saline nasal spray to 25 children and teens twice a day for 2 months. The children who received oxytocin showed greater improvement in social behaviors compared to those who received the inactive nasal spray. Based in part on these promising results, the National Institutes of Health (NIH) awarded $12.6 million to fund a national clinical trial.

The hormone oxytocin plays a crucial role in social bonding.

“The Autism Speaks-funded pilot study was critical in getting the larger grant to test this treatment,” says lead researcher Linmarie Sikich, M.D., of the University of North Carolina, Chapel Hill. “We want to extend our great appreciation to Autism Speaks, the families and children who participated in the pilot study and the National Institute of Child Health and Human Development, which is supporting the larger trial.”

The study is called SOARS-B, for the Study of Oxytocin in Autism to improve Reciprocal Social Behaviors. During the first six months of the study, half of the participants will receive the oxytocin spray. The other half will receive the saline spray, for comparison. Neither researchers nor participants will know who receives which. During a second six-month period, all participants will receive the oxytocin spray.

The researchers will measure improvements in social skills and communication. They will also use blood samples to conduct gene-based tests. In this way, they hope to track whether and how the treatment alters gene activity associated with sociability.

“This exemplifies translational science,” says Autism Speaks Chief Science Officer Geri Dawson, Ph.D. “Autism Speaks funding of basic science on oxytocin and a pilot clinical trial with children provided the leverage needed to fund a gold-standard national trial. We’re tremendously grateful to our donors for making this possible.”

The researchers expect to start enrolling subjects in early 2013. Participating centers include:

* The University of North Carolina ASPIRE program, in Chapel Hill and Durham
* The Lurie Center for Autism, Massachusetts General Hospital, Boston
* Seaver Autism Center, Mount Sinai School of Medicine, New York
* Seattle Children’s Research Institute
* The Vanderbilt Treatment and Research Institute for Autism Spectrum Disorders, Nashville

For more information, visit the SOARS website. Please also see Autism Speak Participants Guide to Autism Drug Research.

Funding of the SOARS study is part of $100 million in federal grants awarded to nine Autism Centers of Excellence earlier this month. Many of these major research projects grew out of pilot studies funded by Autism Speaks. Please see our related news story here.

Autism Speaks is currently funding a number of studies on oxytocin. You can explore these and other donor-funded research projects using this website’s Grant Search.

Reported by Autism Speaks science writer Laurie Tarkan

These trials should not be given to patients who are extremely vulnerable as in the case of my daughter and others at the Bethlem. Neither should the drugs be enormous in order to challenge someone’s physical health to the extreme as in cases I know. What is going on when vulnerable patients are being used as human guinea pigs.

Anyway, Elizabeth will hopefully be down this weekend and may wish to write herself like last time. If the weather is good I will be taking her to the coast for the day – I have Friday off and then the weekend and will drive her back Sunday.

As I have discovered I receive more communication through social media that through all the teams put together but the biggest worry is when there is no communication between the psychiatrist and the GP – when medicine is overprescribed like the Metformin that I got taken off 500mg a day off label – this was given by the Bethlem and should not have been.

I am also hoping that the Professor who is the Country’s leading Expert in Cytochrome P450 Metabolism will soon come back to the UK as I would like Elizabeth to see him and be analysed as she is treatment resistant and if someone is treatment resistant what are they doing giving the drugs and why are the team dismissing PTSD and the report I have – there is a wall of silence about this and underneath all of this could well be underlying physical health problems not ever investigated by any team as they have been too busy coming up with new diagnoses and more and more different drugs to experiment with than think about the physical health of Elizabeth.

With Elizabeth’s care shrouded in secrecy since leaving the Bethlem and then being transferred to Cambian under Section 3 it has been hard to see what is going on under those circumstances but the truth always comes out in the end.  When you are only allowed 1 day and 1 night to share amongst the family and most of that time was spent travelling from Wales.  Never before have we as a family been allowed to have Elizabeth for a week like at Easter but that is when you see what is being dished out.

As you know I got 500mg a day taken off (Metformin) as the GP could see no reason why this was ever prescribed.  It was prescribed alongside Clozapine which is contra indicated.   I felt so happy as the least drugs the better as far as I am concerned as I know what damage this is all doing to Elizabeth.  However when I looked at the drugs chart given with the medication brought home there were others mentioned ie Bisoprolol which is a Beta Blocker used to treat hypertension.  I can only assume Elizabeth has high blood pressure or heart problems now associated with taking Clozapine.    Anyway I looked up this additional drug which was not included with the drugs sent home for her to take  –  “stopping suddenly may make your condition worse or cause other serious heart problems”  “Bisoprolol can cause side effects that may impair your thinking or reactions.”   

Tell your healthcare provider:

If you have asthma, bronchitis, emphysema

With diabetes – “Bisoprolol makes it harder for you to tell when you have low blood sugar

Thyroid Disorder/liver/kidney disease.

Also Raynaud’s syndrome which I am concerned about because Elizabeth was ice cold with her hands on a hot sunnyday.

 

It gives a list of other drugs that can affect Bisoprolol etc. – even vitamins

I am most concerned about this other list of drugs that the team are giving to Elizabeth which also includes Senna as of course Clozapine is a drug that can cause constipation and just take a look at Northampton Hospital as an example there where professionals do not give proper case leading to death.

I have also seen Lorazepam and Paracetamol prescribed so every time Elizabeth mentions she feels stressed or has a headache the staff dish out more and more drugs.

Anyway I have sought advice and Clozapine is contra indicated in heart disease for a start and Senna is often concomitantly prescribed with high doses of Clozapine (Page 222 BNF 60) and 350 mg is high.  Also I have been told it is strange that PRN Lorazepam is being used with such a high dose.  If 350mg is not controlling the agitation then it would make more sense to titrate Clozapine down and it has been suggested about titrating up with Risperidone which is another 5-HT antagonist.   I can see that the Clozapine is not doing Elizabeth any good at all.

 

I am appalled that I am having to ask about the whereabouts of the supplements which have disappeared into thin air alongside the oils from Dr Tracy.  The truth always comes out in the end and I will check thoroughly when I am next down as I am waiting for a response in writing – whilst £200 is not a huge amount of money I would like to know where these are – it is the principal.  This is why I am not happy at being requested by Elizabeth to provide more fish oil when these things have disappeared that I originally provided.  The GP should provide them instead of all the poisonous drugs she is on now.   I have been advised not to use some supplements which are interactive and toxic and that I should check the formularly and never to use St John’s Wort or any other herbal treatments as they are as dangerous as the pharma manufactured treatments.   Well I need to watch that the team do not plrescribe any other anti-pscyhotics as this drug Bisoprolol should be used with caution where other anti-psychotics are prescribed.  Just about all the D2 (Dopamine) antagonist drugs are associated with cardiac ventricular arrhythmias

Anyway I am not happy that all these drugs are given to my daughter and they are causing her to have side effects.

Because of my concerns the team are calling a meeting and I wonder if the family will be included as this has not been the case in the past.

The new Consultant Psychiatrist has failed to ring me despite my requests and I have made it clear I am far from happy.  It is not the care home or the staff or activities it is the treatment.  What kind of treatment is this when someone is treatment resistant and can remember everything for a start but worse of all is the treatment called ECT where people lose happy memories and this is forced upon patients under Section.   It is barbaric what is going on in the UK.

 

I am in favour of the research in metabolism as if is proven that someone cannot metabolise the drugs and they are doing more harm than good the this will lead the way for someone to be reduced off these drugs and unlike at present decent facilities provided for when things go wrong as in the case of Elizabeth as NONE of these mind altering drugs have worked.   For Elizabeth’s condition of PTSD (or underlying endocrinal disorder the drugs are ineffective and a waste of taxpayer’s money.  As you can see there is no end of drugs available for Elizabeth to take yet someone may need a life-saving drug for a physical condition and are denied this –  why not stop pushing the drugs at my daughter and then there will be more money available for those who genuinely need these life saving drugs – better as none of these drugs have worked for Elizabeth and the NHS would save a fortune by not pushing drug are drug at psychiatric patients when all along they could have a physical problem instead.  No wonder they do not get better and they could be doing more harm than good.   For example Clozapine given to refractive patients is a weak dopamine receptor antagonist meaning the symptoms cannot be linked to excessive dopamine in the brain.    Clozapine inhibits 5-HT serotonin, muscarinic, histamine and alpha-adreno-receptors.  I have received some very good advice about this which I have posted already. 

I am waiting to hear about this meeting right now.   I would be prepared to take Elizabeth abroad to get decent care and have proper assessments – this is where the money should be spent so that people like Elizabeth can get the correct treatment, not just a catalogue of psychiatric drugs. 

 

 

 

 

      

 

 

 

 

 

 

1-17-07VeraSharavTestimonyUNITED STATES DISTRICT COURT
EASTERN DISTRICT OF NEW YORK
2 ——————————x
IN RE:
3 ZYPREXA LITIGATION,
4 MDL 04 1596
5 United States Courthouse
Brooklyn, New York
6 ——————————x
7 January 17, 2007
11:00 a.m.
8
TRANSCRIPT OF HEARING
9 Before: HON. JACK B. WEINSTEIN, District Judge
10 APPEARANCES
11 Attorneys for Plaintiff:
12 DOUGLAS & LONDON, ESQ.
111 John Street
13 Suite 1400
New York, N.Y. 10038
14 BY: MICHAEL A. LONDON, ESQ.
15
THE MILLER FIRM
16 The Sherman Building
108 Railroad Avenue
17 Orange, Virginia 22960
BY: MICHAEL J. MILLER, ESQ.
18
19
20 FRED VON LOHMANN, ESQ.
Attorney for Electronic Frontier Foundation
21 454 Shotwell Street
San Francisco, Ca 94110
22
23
24
25
67
1 Attorneys for Defendant:
2 PEPPER HAMILTON
Attorney for Eli Lilly
3 3000 Two Logan Square
Eighteenth and Arch Streets
4 Philadelphia, Pa 19103-2799
BY: SEAN P. FAHEY, ESQ.
5 GEORGE A. LEHNER, ESQ.
NINA M. GUSSACK, ESQ.
6 ANDREW R. ROGOFF, ESQ.
7
8
9 McCARTER ENGLISH
Attorneys for Eli Lilly & Company
10 245 Park Avenue
New York, N.Y. 10167
11 BY: SAMUEL J. ABATE, JR., ESQ.
12
13 SHERMAN, SILVERSTEIN, KOHL, ROSE & PODOLSKY
Attorneys for Vera Sharav, David Cohen, AHRP
14 4300 Haddonfield Road
Suite 311
15 Pennsauken, New Jersey 08109
BY: ALAN C. MILSTEIN, ESQ.
16
17
KOOB & MAGOOLAGHAN
18 Attorneys for Dr. Eagleman
South Street Seaport
19 19 Fulton Street
New York, N.Y. 10038
20 BY: ALEXANDER A. REINERT, ESQ.
21
22
23
24
25
68
1 APPEARANCES: (Continued)
2
3 EDWARD HAYES, ESQ.
Attorney for Mr. Gottstein
4
5 JOHN McKAY, ESQ.
Attorney for Mr. Gottstein
6
7
8 Allan R. Sherman, CSR, RPR
225 Cadman Plaza East
9 Brooklyn, New York 11201
Tel: (718) 260-2529 Fax: (718) 254-7237
10
11 Proceedings recorded by mechanical stenography, transcript
produced by computer.
12
13
14
15
16
17
18
19
20
21
22
23
24
25
161
1 MR. HAYES: Right.
2 THE COURT: I think it’s reasonable to read the
3 letter plus the attachment as indicating December 20th as the
4 date for supplying the exhibits.
5 MR. McKAY: Your Honor —
6 THE COURT: Do you want to ask anything?
7 MR. McKAY: No, your Honor. I think that it’s
8 really argumentative. It’s the date of the deposition and we
9 agree with that.
10 THE COURT: Then I’m prepared to release the
11 witness.
12 MR. HAYES: Yes.
13 THE COURT: Have a good trip back to Alaska, sir?
14 THE WITNESS: Thank you, your Honor.
15 (Witness excused.)
16 THE COURT: Next witness.
17 MR. LEHNER: At this time we would call Vera Sharav
18 who is still in the courtroom, I believe.
19 VERA SHARAV, having been called as a
20 witness, first being duly sworn, was examined and
21 testified as follows:
22 THE CLERK: Could you please spell your name for the
23 court reporter.
24 THE WITNESS: Vera Sharav, V-E-R-A S-H-A-R-A-V.
25 DIRECT EXAMINATION
162
1 BY MR. LEHNER:
2 Q Good afternoon, Mr. Sharav.
3 My name is George Lehner and I represent Lilly in
4 this proceeding.
5 Can you tell us when you first met Mr. Gottstein,
6 under what circumstances?
7 A That’s hard to tell because I don’t really remember.
8 Face-to-face when did I meet him?
9 Q When did you first become acquainted with him?
10 A I became acquainted with his work with Psych Rights Law
11 Project.
12 Q When was that?
13 A That might have been two years ago. I don’t have an
14 exact.
15 Q 20?
16 A 2 years ago perhaps.
17 Q And over the last two years, what kind of contact have
18 you had with Mr. Gottstein?
19 A All kinds of contact. We have similar goals in certain
20 ways and we sometimes collaborate and I spoke, gave a
21 presentation at a conference that he held on November 17th for
22 the National Association For Rights Advocacy. I forgot the
23 last name but it’s NAPA. It’s an organization for psychiatric
24 patients’ rights.
25 Q So it’s fair to say over the last two years you’ve had
163
1 regular contact with Mr. Gottstein, is that correct?
2 A As I do with very many advocates.
3 Q And the conference that you mentioned on November 17,
4 that was, you were with Mr. Gottstein at that particular
5 conference?
6 A He organized it. I was invited as a speaker and went to
7 Baltimore and presented to them, yes.
8 Q At that conference did you and Mr. Gottstein have an
9 occasion to talk about Zyprexa and the litigation that was
10 ongoing at the time?
11 A No.
12 Q And if you let me finish my question, it will make it a
13 lot easier for the court reporter and I’ll try not to
14 interrupt your answer as well.
15 My question was, and I think if I understood, your
16 answer was that you did not have any occasion to discuss
17 Zyprexa with Mr. Gottstein when you were with him on
18 November 17?
19 A I was actually together with my husband so I didn’t have
20 these private conversations. It was a conference as I said.
21 Q Let me ask you, and you’ve been in the courtroom and
22 you’ve heard testimony about the documents that Mr. Gottstein
23 received from Dr. Egilman.
24 When did you first receive a copy of the documents
25 that we’ve been talking about here today, those documents that
164
1 Dr. Egilman produced to Mr. Gottstein?
2 A I believe it was on the 18th. I have the document with
3 me. The stamp was the 14th. In other words, it left Alaska
4 on the 14th. I didn’t get it before the 18th. It was a
5 weekend.
6 Q They were mailed to you?
7 A Yes.
8 Q You said you had the documents with you?
9 A Yes.
10 Q Is that a DVD version?
11 A Yes.
12 Q It’s the only copy you were provided?
13 A What I have is what I was provided.
14 Q Had you been alerted that these documents were going to
15 be sent to you before the time they actually arrived when they
16 arrived at your home?
17 A I had received word that the documents had been posted
18 and I was given the website and I tried to open it and I
19 couldn’t. So I sent Jim an E-mail and said I can’t open it.
20 Q Let take that apart a little bit.
21 You had received word. Who had you received word
22 from?
23 A I believe it was — I think it was Bob Whitiker. I’m not
24 sure but this was — you have to understand that when those
25 documents evidently went up, I was in Washington at an FDA
165
1 hearing where I had to conduct a press briefing about
2 antidepressants and suicidality so I was quite out of it and
3 came back on 14th at which time I had a barrage of E-mails
4 from different people about the Zyprexa documents being up on
5 the web.
6 Q So you came back from a conference in Washington or a
7 meeting in Washington?
8 A A hearing, an FDA advisory hearing.
9 Q On the 14th?
10 A Yes. I was there the 12th and 13th.
11 Q Which was a Thursday?
12 A I guess.
13 Q At that point you had a barrage of E-mails alerting you
14 that the documents that had been provided by Dr. Egilman to
15 Mr. Gottstein were on a website?
16 A That’s not exactly how it was put, but what was said was
17 that the Zyprexa documents were up on the website, yes.
18 Q And do you recall from whom you received —
19 A As I said, there were many. There is a network, people,
20 and you get actually lots of duplicates.
21 Q I’m going to ask you again, please don’t interrupt me and
22 I won’t interrupt you.
23 My question was: Do you recall some of the people
24 who sent you that E-mail? I understand it was a barrage but
25 from whom did you receive the E-mail?
166
1 A Actually from far and wide. There are advocate in the
2 U.K., Australia, Canada. Word travels on the internet and
3 that is in fact the big connecting factor for people who don’t
4 have great many resources and who don’t have many lawyers.
5 The internet is the way that there is a constant interchange
6 and that is how it happens.
7 Q Do you still have your computer on which you received the
8 barrage of E-mails?
9 A Probably some have probably been deleted but some I still
10 have.
11 Q Do you still maintain the same computer on which they
12 were received?
13 A Yes.
14 Q Did you have any conversations with anybody after you
15 received these E-mails and before you actually received the
16 physical package containing the disc containing the documents?
17 A No, I just —
18 Q Did you have any conversation with anybody about what
19 these documents may be that were in the mail on their way to
20 you between the 14th and the time they arrived at your home?
21 A I think you have to understand that many of us were quite
22 aware that the documents had first been obtained in what is
23 now referred to as the Zyprexa 1 trial, the one in which there
24 were 8,000 plaintiffs and Lilly paid some $690 million which
25 we regard as money to keep the documents out of the public
167
1 domain.
2 And so there was guessing as to what was in them.
3 We also know from documents from the FDA and from pre-clinical
4 — before the drug was approved as to some of the problems and
5 the fact that diabetes is now an epidemic —
6 Q What I want to really focus on are the conversations that
7 you had about how you learned what was in these documents.
8 You said you became aware even before the time the documents
9 were on their way to you what was in those documents.
10 How did you become aware of that?
11 A As I just explained, the adverse events that have been
12 observed in clinical practice —
13 Q So —
14 A I would also like not to be interrupted.
15 Q The first time I did it and I apologize.
16 A The fact that patients are getting diabetes,
17 cardiovascular dysfunction, hyperglycemia, that people are
18 dying, this is what is really the issue here. People are
19 dying from this drug. So getting documents that validate the
20 clinical evidence is very important to us.
21 Q Let me focus a little bit more on what you did when you
22 actually received the documents than on the weekend after you
23 got back.
24 The 18th was on a Monday?
25 A It could not have been before Monday and I get mail in
168
1 the afternoon.
2 Q The documents arrived in the mail, what did you do at
3 that point with this disc? It’s a computer disc?
4 A I had it. I didn’t do anything with it but I got some
5 calls.
6 Q Did you load it up on your own computer?
7 A Yes.
8 Q And you tried to open it?
9 A Yes.
10 Q And were you able to open it?
11 A Yes, I was.
12 Q Did you print up any of those documents?
13 A Yes.
14 Q And did you then distribute the documents that you
15 printed to anybody or give them to anybody?
16 A I read the documents or some of them.
17 Q Did you give them to anybody else?
18 A I had calls from a couple of press people and two came,
19 borrowed the disks, made copies and returned them. I didn’t
20 do it.
21 Q Who were these people?
22 A Wall Street Journal, Bloomberg News.
23 Q That was done on the afternoon of the 19th or the 18th?
24 A The 18th I think — 18th and 19th, morning.
25 Q Were you aware when you received these documents that
169
1 they had been the subject of what has been described here and
2 you’ve heard the testimony of a protective order that had been
3 entered into this case?
4 A I don’t know about a protective order about the case.
5 What I was given to understand is that the documents were
6 obtained legally, that certain legal procedures were
7 undertaken and that’s it and I accepted that. And of course
8 by the time I got them, they had been in the New York Times so
9 I figured that is the public domain.
10 Q Who had given you the understanding that they had been
11 obtained legally? Who told you that they had been obtained
12 legally? You said you had been given an understanding?
13 A That would be Jim Gottstein.
14 Q So you spoke to Jim Gottstein over the weekend?
15 A I spoke to him when I couldn’t open the link. Remember.
16 I couldn’t, in other words, download it myself so I said can
17 you send me it.
18 Q So you called Mr. Gottstein, said I’m trying to download
19 these documents from a link I have, I’m not able for open them
20 and you had a conversation with Mr. Gottstein at that time?
21 A Yes.
22 Q During that conversation you were led to believe that
23 these documents had been obtained legally?
24 A Yes.
25 Q And that understanding was provided to you by Mr.
170
1 Gottstein, is that correct?
2 A It was validated in my mind when they appeared on Sunday
3 in the New York Times front page, then again on Monday on the
4 front page. Then of course the editorial calling for
5 congressional hearings about the content of the documents and
6 that is really my interest. My interest is the content
7 because the documents document the fact that Eli Lilly knew
8 that the — that Zyprexa causes diabetes. They knew it from a
9 group of doctors that they hired who told them you have to
10 come clean. That was in 2000. And instead of warning doctors
11 who are widely prescribing the drug, Eli Lilly set about in an
12 aggressive marketing campaign to primary doctors. Little
13 children are being given this drug. Little children are being
14 exposed to horrific diseases that end their lives shorter.
15 Now, I consider that a major crime and to continue
16 to conceal these facts from the public is I think really not
17 in the public interest. This is a safety issue.
18 MR. LEHNER: I move to strike as being nonresponsive
19 to my last question and I would like to ask the court reporter
20 if he is able to — I think I remember my last question. I’ll
21 repeat my last question. Nonetheless, I’ll make a motion to
22 strike the last answer.
23 THE COURT: Denied.
24 Q My question was was it Mr. Gottstein who conveyed to you
25 the impression that you formed in your mind that these
171
1 documents had been obtained legally?
2 A Yes.
3 Q So the answer to that is yes?
4 A Yes.
5 Q Thank you very much.
6 Now, when he conveyed to you that the documents had
7 been obtained legally, did he tell you that they had been in
8 his view subject to a protective order at one point in time?
9 A By this time I don’t know any more about protective. The
10 next thing that came were an E-mail like I think from one of
11 your lawyers.
12 Q So at some point you learned that these documents were
13 subject to a protective order and were in fact considered by
14 Eli Lilly to be confidential documents, is that correct?
15 A I realized that there was contention around it. I did
16 not accept necessarily what Eli Lilly’s interpretation is.
17 Q I’m not asking you that.
18 You understood that there was at least a belief by
19 Eli Lilly and perhaps others that these documents were still
20 subject to the protection of the Court under the protective
21 order?
22 A No, I don’t really — I have to admit, protective order
23 pro se does not mean the same thing to me as it does to you.
24 Q You understand that they were designed to be kept
25 confidential?
172
1 A Except that they were open in the New York Times. That
2 signalled that they were open to the public.
3 Q Were there any documents that were actually reprinted in
4 the New York Times or was it actually a story?
5 A There were quotes from documents.
6 Q No whole pages or whole documents in the New York Times?
7 A No, but there were quotes from extensive documents.
8 Q Did you ever consult or consider consulting a lawyer to
9 determine the fact of whether you received this does put you
10 in any type of legal jeopardy?
11 MR. MILSTEIN: That would be attorney/client
12 privilege.
13 MR. LEHNER: I’m not asking whether she consulted a
14 lawyer.
15 THE COURT: Address your remarks to me. She is just
16 being asked about whether she consulted. That is not
17 privilege.
18 A I did not think I had any reason to.
19 Q Did you ever consider whether or not there was any
20 opportunity to contact Eli Lilly or to contact Mr. Gottstein
21 or any of the attorneys that you had become aware were
22 involved in this controversy and determine whether or not
23 there was a procedure that had been set up to determine
24 whether or not these documents should be kept confidential?
25 A I’m afraid that after they appeared in the New York
173
1 Times, I did not think that it was my obligation to go hunting
2 for what Eli Lilly considered or didn’t consider. That really
3 is not my purview.
4 Q Now, I’ll ask that this be marked as Petitioner’s
5 number 7, please — 8.
6 THE COURT: You are offering it in evidence?
7 MR. LEHNER: I am, your Honor.
8 THE COURT: Admitted.
9 (So marked in evidence Petitioner’s Exhibit 8.)
10 Q Have you had an opportunity to review what has been
11 marked as Petitioner’s 8?
12 A Yes.
13 Q And if I’m correct, this is an E-mail that was sent from
14 Mr. Jim Gottstein to Veracare. Is that your E-mail address?
15 A Yes.
16 Q And it was sent on Tuesday December 19th?
17 A Yes.
18 Q And it’s copied to Mr. Gottstein and Mr. McKay and Mr.
19 Woodin, somebody at the Lanier law firm, an address
20 emj@lanierlawfirm, an address rdm at the Lanier law firm,
21 gentleman at the law firm of Elaine Powell?
22 A These weren’t familiar to me, of course.
23 Q The only name that is familiar on there I take it is Mr.
24 Gottstein?
25 A Yes.
174
1 Q He sent you this E-mail on December 19 and if you would
2 read the first two lines of the E-mail.
3 A “I mailed you two DVDs with some documents on them
4 pertaining to Zyprexa and have been orally ordered to have
5 them returned too.”
6 Q Now you indicated earlier on that you received one DVD.
7 Did you receive one or in fact receive two?
8 A 2.
9 Q So you received two DVDs?
10 A Yes.
11 Q Have you brought both of these DVDs with you here today?
12 A Yes.
13 Q You brought both of them here with you today?
14 A Yes.
15 Q My questions earlier on about opening the documents
16 loading them on your computer, my understanding was we were
17 talking about one DVD but did you in fact open up both DVDs
18 and copy both DVDs onto your computer?
19 A I did one. I assumed they were duplicates.
20 Q Did you look at the second DVD to determine if it was a
21 duplicate?
22 A No, I didn’t have time. This is very laborious.
23 Q Was there something in the package to indicate to you
24 that these were duplicates of one DVD?
25 Was there anything in the packet itself that
175
1 suggested that these were duplicates of the same DVD?
2 A No, I had asked for two copies.
3 Q Who did you ask for two copies?
4 A From Jim.
5 Q So you had a communication with Jim?
6 A That was the same communication that I referred to
7 earlier. When I couldn’t open it and download it myself, I
8 indicated that to him.
9 Q And what was your interest in having two copies?
10 A I wanted to take one to the New York State Attorney
11 General.
12 Q Now, this E-mail goes on and gives the address to whom
13 Mr. Gottstein has been asked to send these DVDs back. And it
14 gives a link to the proposed order in the case.
15 Did you open up that link and read the order?
16 A No, I didn’t, actually because I noticed that he said he
17 was orally ordered and I didn’t think that orally ordered was
18 a Court order and I wanted to hear that there would be a
19 hearing or some sort of thing in court and then I would of
20 course follow that. But when it says I’ve been orally
21 ordered, that sounded peculiar to me. It didn’t sound like an
22 order from the Court.
23 MR. CHABASINSKI: Your Honor, I cannot hear the
24 witness at all.
25 THE WITNESS: Can you hear now?
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1 MR. CHABASINSKI: Yes, thank you.
2 Q Would you go on and read the rest of the E-mail after the
3 address. The address — we’ll stipulate the document says to
4 Mr. Peter Woodin. Then it gives a website, but if you would
5 read that paragraph that begins starting with a copy.
6 A “A copy of the proposed written order is posted at Psych
7 Rights — that is the organization and so forth — with a
8 comment about certain language which I strenuously disagree
9 with and we are trying to get eliminated from the signed
10 order.
11 Q Would you read the next paragraph?
12 A “Regardless, please return the DVD, hard copies and other
13 copies to Special Master Woodin immediately. If you have not
14 yet received it, please return it to Special Master Woodin
15 when you do receive it. In addition, please insure that no
16 copies exist on your computer or any other computer equipment
17 or in any other format, websites or FTP sites or otherwise on
18 the internet. There is a question in my mind that the Court
19 actually has jurisdiction over me to issue the order. I
20 believe I came into the documents completely legally but the
21 consequences to me if I am wrong about the jurisdiction issue
22 are severe so I would very much appreciate your compliance
23 with this request.”
24 Q I take it that you did not return the DVD to Mr.
25 Gottstein or to Special Master Woodin, is that correct?
177
1 A That’s correct.
2 Q And you did not return the hard copies or any copies of
3 the hard copies that you made to Special Master Woodin, is
4 that correct?
5 A That’s correct.
6 Q And I take it that you did not check your computer to
7 make sure that no copies of the documents once you had opened
8 them on your computer existed, is that correct?
9 A That’s correct.
10 Q Why not?
11 A In the meantime, I also had word that there would be a
12 hearing.
13 Q When did you first get word that there would be a
14 hearing?
15 A I don’t know the exact date but this was very much in
16 tandem because the first thing I heard, I think the first
17 communication was from your cocounsel —
18 What’s his name?
19 It’s not listed here. Fahey.
20 So that there were cross-signals going on and I did
21 see that there would be a Court hearing and I decided to wait
22 for that.
23 Q Was there anything in the notice that you received about
24 the court hearing that suggested that the order that had been
25 given here to return these documents was somehow being
178
1 withdrawn?
2 A As I say, this is coming to me not from the Court, it’s
3 coming from James saying that he was ordered orally and
4 telling it to me. That is not direct instruction from the
5 Court.
6 Q But the same time as you testified, you didn’t feel it
7 was necessary to even push on the link here where you could
8 read the order yourself, that was your testimony?
9 A It’s —
10 Q That was your testimony, isn’t that correct?
11 A Jim posted many documents during this time. I did not go
12 to each one because I was busy also with other things. The
13 Zyprexa thing, as important as it is, was not the only thing
14 that I had to deal with during this period.
15 So no, I did not go and download each of the
16 documents. They were coming fast and furious.
17 Q Let’s go back and look at the website address to see
18 whether that might have heightened your concern about what
19 this particular document was.
20 That website address reads
21 http://PsychRights.org/states/Alaska/caseXX/Eli Lilly/proposed
22 order.
23 Is that correct?
24 A Proposed order.
25 Q And you read that?
179
1 A Proposed order. It’s not a definite thing. I did not
2 take that as a definite. It says proposed order.
3 Q So you reread that in this E-mail and decided I don’t
4 need to open this?
5 A That’s right.
6 Q Do you recall receiving the order dated December 29 from
7 this Court which was I think transmitted to you by Mr. Fahey
8 among others?
9 A I do and I took that one seriously.
10 Q Did you return the documents as a result of receiving
11 that particular order?
12 A We weren’t told to return them, the Court did not order
13 us to return them.
14 Q But did the Court order you to do that at that time, do
15 you recall?
16 A I don’t know.
17 Q You took that order seriously enough so that you posted
18 it on your website, is that correct?
19 A Yes.
20 MR. MILSTEIN: Can you show the witness the order.
21 MR. LEHNER: Just so it’s in the record, I would
22 like to mark it.
23 THE COURT: Petitioner’s 9, order of Judge Cogan
24 filed December 29th.
25 Do you have a copy, ma’am?
180
1 THE WITNESS: Not yet.
2 MR. LEHNER: Just for housekeeping, I think we did
3 move the admission of Petitioner’s 8.
4 MR. MILSTEIN: I have no objection to the admission
5 of the order. I object to his characterization. He
6 characterized the order as saying it required the return of
7 the documents. The order requires no such thing.
8 THE COURT: That is true but for the sake of the
9 clarity of the record, I’ll introduce it as Petitioner’s 9
10 even though obviously it’s a part of the record.
11 (So marked in evidence Petitioner’s Exhibit 9.)
12 Q You have that order in front of you?
13 A Yes, I do.
14 Q Is that the order that you posted on your website?
15 A That may be. I have a blogger.
16 MR. LEHNER: Can we mark as the next exhibit
17 Petitioner’s 10.
18 THE COURT: Mark it in evidence Petitioner’s 10.
19 (So marked in evidence Petitioner’s Exhibit 10.)
20 THE COURT: Should you want a recess at any time,
21 just ask for it.
22 THE WITNESS: Thank you.
23 MR. LEHNER: May I approach the witness for a
24 minute?
25 THE COURT: Yes.
181
1 MR. LEHNER: Can I make sure they are in the right
2 order. They might have gotten — yes, that is fine.
3 (Pause.)
4 MR. MILSTEIN: Do you have a question?
5 Q Yes.
6 Have you had a chance to read that?
7 A I’m familiar with this, this is on our blogger.
8 MR. MILSTEIN: Just wait for the question.
9 MR. LEHNER: Your Honor, if I can hand her
10 Exhibit 8.
11 Q You said this is a blog that you maintained?
12 A Actually, it’s maintained by a scientist in the U.K.
13 Q This is a blog to which you post information, is that
14 correct?
15 A Yes.
16 Q And the particular information that is included on this
17 particular document that appeared on the website was posted by
18 you, is that correct?
19 A Not physically. It’s posted by the scientist.
20 Q It’s your content that you provided to somebody who
21 puts —
22 A Except for the first line, your esteemed author. I don’t
23 do that.
24 Q Other than that, these are your words that you wrote?
25 A Yes.
182
1 Q And had somebody put on the website, is that correct?
2 A Yes.
3 Q And the — I’ll turn your attention to the paragraph that
4 begins: “See the court injunction several of us received
5 below.”
6 Do you see that particular paragraph?
7 A Yes.
8 Q The — why don’t you just read that paragraph through to
9 the end, please.
10 A “See the court injunction several of us received below
11 but the internet is an uncontrolled information highway. You
12 never know where and when the court’s suppressed documents
13 might surface. The documents appear to be downloadable at —
14 and it provides two websites that I’m unfamiliar with. Do you
15 want me to read them?
16 Q No, that is all right. We’ll note there are two websites
17 here in the documents but these are website addresses that you
18 wrote put in this document that directs people to go to the
19 documents, is that correct?
20 A If they chose, yes.
21 Q And you were aware, however, that the order that you put
22 on the — and posted in this blog and had copied in there
23 suggested that those — suggested or not or ordered that the
24 temporary mandatory injunction requires the removal of any
25 such documents posted at the website?
183
1 A We did not have them at our website.
2 Q You read the order, is that correct?
3 A Yes.
4 Q And you understood that the order itself required that
5 the mandatory injunction required the removal of any such
6 documents posted at any website?
7 A Yes, but I have no control over what people put on their
8 websites.
9 Q But you did feel that you had not only the opportunity
10 but I guess you felt you had the obligation to direct people
11 the toward websites where you believed at least they could
12 find these documents which the Court had ordered to be removed
13 pursuant to the order of December 29th, is that correct?
14 A That’s correct.
15 Q Let me just ask one final question.
16 You mentioned that the group that you are associated
17 with the Alliance For Human Resource?
18 A Protection.
19 MR. MILSTEIN: Research.
20 A Research, Alliance For Human Research Protection.
21 Q That is a group?
22 A I am the president and founder.
23 Q Is that group affiliated with MindFreedom in any way?
24 A No.
25 Q Is it affiliated with NAPA in any way?
184
1 A No, we are strictly independent in every way, no funding
2 from industry.
3 MR. LEHNER: One more document to make sure that the
4 record is complete here.
5 THE COURT: Petitioner’s 11.
6 (Pause.)
7 Q Have you had an opportunity to review what has been
8 marked as Petitioner’s 11?
9 A Yes, I have.
10 MR. LEHNER: We move that into evidence, your Honor.
11 THE COURT: Yes.
12 (So marked in evidence Petitioner’s Exhibit 11.)
13 Q Why don’t you just tell us the dates on which this E-mail
14 was sent and received?
15 A It was sent on Sunday December 17th, the day that the
16 first article on the front page of the New York Times appeared
17 and I wrote a note to Jim: “Hope I get the copies.” I still
18 hadn’t had the copies. “I intend to call New York State
19 Attorney General Andrew Cuomo tomorrow to deliver, then will
20 send to other attorneys general. I think that is
21 ground-breaking. Lilly is finally haven’t a PT disaster. I’d
22 like to coordinate with you when you write up the summary of
23 threats, et cetera. Forward so that I can incorporate into
24 infomail and then P.S. your portrait is a third of the page.”
25 Q After you talked to Mr. Gottstein, you had asked him to
185
1 send you the DVDs because you had not been able to download
2 them from the link, is that correct?
3 A Yes.
4 Q And you signalled to him your intention then that it was
5 your desire to disseminate and spread this information as
6 broadly as you could at this point?
7 A In particular to the New York State Attorney General
8 after I read in the Times what was in the content of the
9 documents.
10 Q Before you read The Times, other than what you testified
11 to earlier about your suppositions of what might be in these
12 documents, did you have any other information that led you
13 specifically to believe — that led you to a specific belief
14 about what was in those documents?
15 A As I explained, there have been —
16 Q Let me strike that question and ask more particularly.
17 Did you and Mr. Gottstein when you talked to him
18 that day discuss the content of the documents?
19 A No.
20 MR. LEHNER: I have no further questions at this
21 time.
22 MR. HAYES: Nothing, judge.
23 MR. McKAY: Nothing.
24 CROSS-EXAMINATION
25 BY MR. MILSTEIN:
186
1 Q Ms. Sharav, can you tell the Court what the Alliance For
2 Human Research Protection is?
3 A We’re a group of professionals and lay people and our
4 mission is to protect the rights of human subjects in medical
5 research and to inform about concealed adverse drug events.
6 Q And if you can tell the Court something about your
7 background. Have you been asked the to testify or serve on
8 various government committees?
9 A Yes, I have. I’ve served, I have testified at various
10 government agencies including the FDA, the Institute of
11 Medicine, I presented at the National Academy of Science. I
12 was on the Children’s Committee of the — what was it called
13 then? The National Bioethics Advisory Committee and I’ve
14 presented before various bodies before the military, Columbia
15 University, Cornell University of Texas, primarily about both
16 unethical experiments and about the epidemic adverse effects
17 of drugs, particularly the psychotropic drugs but not
18 exclusively. Our organization focuses more generally but
19 there is a great deal in this area because vulnerable people
20 such as children and the elderly and disabled people are being
21 targeted to take drugs that are doing them more harm than
22 there is any evidence of benefit.
23 So that is why there is such a focus on this.
24 Q And in that experience that you’ve had, I take it you’ve
25 done a lot of research into the way drug companies market
187
1 their drugs?
2 A Yes, I have.
3 Q And the way they conduct research on their drugs?
4 A Yes, I have.
5 Q And I take it you consider it your life’s calling to
6 inform the public about unethical practices of pharmaceutical
7 companies like Eli Lilly?
8 A Absolutely.
9 Q Now, with respect to the conversations you had with Mr.
10 Gottstein, you did not receive the documents before the New
11 York Times published it’s front page article, is that right?
12 A That’s correct.
13 Q Mr. Gottstein didn’t tell you what the documents
14 contained?
15 A No, he did not.
16 Q Then you read the New York Times article?
17 A Yes, I did.
18 Q And after that, you received the documents by DVD from
19 Mr. Gottstein?
20 A Yes.
21 Q And did you have occasion to look at and read the
22 document?
23 A Yes, I have.
24 Q And what did the documents show with respect to the
25 practices of Eli Lilly?
188
1 MR. LEHNER: Objection, your Honor.
2 THE COURT: I’ll allow it.
3 A In my opinion, this is about the worst that I have seen.
4 It borders on indifference to human life. Eli Lilly knew that
5 Zyprexa causes hypoglycemia, diabetes, cardiovascular damage
6 and they set about both to market it unlawfully for off label
7 uses to primary care physicians and they even set about to
8 teach these physicians who were not used to prescribing these
9 kind of drugs to, they taught them to interpret adverse
10 effects from their drug Prozac and the other antidepressants
11 which induce mania and that is on the drug’s labels. They
12 taught them that if a patient presented with mania after
13 having been on antidepressants, that that was an indication
14 for prescribing Zyprexa for bipolar which is manic depression.
15 That is absolutely outrageous and that is one of the reasons
16 that I felt that this should involve the Attorney General.
17 Q What else did the documents say about the way Lilly
18 marketed its products?
19 A They marketed it, as I said, for off label uses which is
20 against the law. They told doctors — they essentially
21 concealed the vital information that they knew from the
22 prescribing doctors and covered it over, sugar coated it which
23 you can see the sales. The sales of a drug that was approved
24 for very limited indications, for schizophrenia and for
25 bipolar. Each one of these is about one to 2 percent of the
189
1 population. But the reason the drug became a four and a half
2 billion dollar seller in the United States is because they
3 encouraged the prescription for children, for the elderly, for
4 all sorts of reasons. The drug is being prescribed
5 irresponsibly because doctors have not been told the truth and
6 major study by the National Institute of Mental Health
7 validates this. It’s called the Catie study. It has been
8 published and they corroborate to such a degree the harm that
9 this drug is doing and the other so-called atypical
10 antipsychotics that leading psychiatrists who had been fans of
11 these drugs are now saying we were fooled, we didn’t realize.
12 It isn’t just weight gain. They are blowing up and it is
13 calling what is called metabolic syndrome, which is a cluster
14 of life-threatening conditions this drug is lethal and many
15 doctors now say it should be banned.
16 MR. LEHNER: Let me move to strike the testimony
17 again as being nonresponsive to the question that was being
18 asked.
19 THE COURT: It shows her state of mind.
20 Q In addition, are you familiar with a video recently
21 posted of a Lilly salesperson who talked about the way Lilly
22 markets the drugs?
23 A Yes.
24 Q Did that also mirror what these documents show?
25 A Absolutely. It appeared on U-Tube and we disseminated
190
1 that and in there the former Zyprexa salesman tells exactly
2 what they were taught and how they were taught to defuse
3 doctors’s concerns who saw their patients as he put it blow
4 up.
5 Q When you reviewed the documents, was there anything in
6 those documents that you viewed as trade secrets or
7 confidential information the way that phrase is usually
8 construed?
9 A Absolutely not.
10 MR. FAHEY: Objection.
11 A What it showed me was why they were willing to pay so
12 much money to keep them concealed.
13 MR. LEHNER: Same objection, no foundation for which
14 she could answer that question.
15 THE COURT: I’ll allow it. It shows state of mind.
16 Q After you received the notice from Mr. Gottstein, did you
17 disseminate the documents?
18 A No.
19 MR. MILSTEIN: That’s all I have, your Honor.
20 THE COURT: Anybody on the phone wish to examine?
21 MR. CHABASINSKI: No, your Honor.
22 THE COURT: Any redirect?
23 MR. LEHNER: No, your Honor, not at this time. The
24 only thing I ask is that the documents she brought with her be
25 returned to Mr. Woodin as they have been by the others in the
191
1 court.
2 THE COURT: Any objection?
3 MR. HAYES: No.
4 MR. MILSTEIN: We have an objection. That is what
5 this hearing is about, whether or not this Court will issue a
6 preliminary injunction ordering a person who did not act in
7 concert with nor did she aid or abet the distribution of these
8 documents by Dr. Egilman, whether this Court can order this
9 witness to return these documents.
10 MR. VON LOHMANN: Let me also just note for the
11 record, your Honor, none of the non-parties have been ordered
12 by this Court or any other Court to return these documents.
13 The January 4th order that your Honor signed also
14 asks simply that they not further disseminate the documents.
15 There is nothing in the January 4th order just as there was
16 nothing in the December 29 order suggesting that the Court is
17 ordering the return of those documents.
18 So what counsel here is asking for is not the
19 enforcement of a prior ruling, what counsel is asking here is
20 something entirely new.
21 MR. LEHNER: This Court asked Mr. Gottstein to
22 retrieve the documents and return them to Mr. Woodin, have
23 people return them directly to Mr. Woodin. That request was
24 based particularly with respect to the first order. She says
25 she has them. Other people felt compelled to comply with that
192
1 request.
2 MR. MILSTEIN: It’s a temporary restraining order
3 that was issued. If the court issues a preliminary injunction
4 order then Ms. Sharav is prepared to give the documents or the
5 DVDs to the special master.
6 If the Court dissolves the confidentiality order
7 with respect to the documents, as we have requested, or
8 decides not to issue a preliminary injunction, then she can
9 continue to hold on to these document and she can post them on
10 her website and distribute them to the public which needs to
11 see them to prevent further harm.
12 THE COURT: The order of December 18 from Judge
13 Cogan orders them returned, I believe.
14 MR. VON LOHMANN: I believe that order orders Mr.
15 Gottstein to request their return but especially considering
16 none of the parties are named in the order, I think it’s
17 certainly — I can’t speak for — none of these non-parties
18 even had seen this particular order at the time.
19 MR. MILSTEIN: And they did not request the New York
20 Times return the documents.
21 THE COURT: We don’t have the New York Times here.
22 We have your client.
23 MR. MILSTEIN: I understand that.
24 THE COURT: Unless you want to represent the New
25 York Times —
193
1 MR. MILSTEIN: The New York Times.
2 THE COURT: — and expand the orders to include it.
3 We can talk about the witness before us.
4 MR. MILSTEIN: The New York Times is noticeably
5 absent from the request of Eli Lilly to be ordered to return
6 these documents.
7 THE COURT: I understand.
8 Well, the order of December 18th requires Mr.
9 Gottstein to attempt to recover the documents.
10 MR. MILSTEIN: To request and she has refused Mr.
11 Gottstein. It doesn’t order her. It orders Mr. Gottstein to
12 ask her and she says no, I’m going to wait until the Court
13 orders me if the court can order me.
14 MR. McKAY: And Mr. Gottstein complied with respect
15 to that order.
16 THE COURT: He is here in court.
17 Paragraph 4 says: “Mr. Gottstein shall immediately
18 take steps to retrieve any documents subject to this order
19 regardless of their current location and return all such
20 documents to Special Master Woodin. ”
21 Come forward, sir.
22 Did you ask the witness to return the documents?
23 MR. GOTTSTEIN: Are you asking me if I did?
24 THE COURT: Yes.
25 MR. GOTTSTEIN: Would you return the documents?
194
1 THE WITNESS: I will return them if the Court orders
2 it.
3 THE COURT: You refuse to turn them over at his
4 request?
5 THE WITNESS: Yes.
6 THE COURT: I’m ordering you to turn them over to
7 your attorney to hold them in escrow.
8 MR. MILSTEIN: I’ll do that, your Honor.
9 THE COURT: Give the envelope to the attorney.
10 Are those all of the documents you have?
11 THE WITNESS: Yes.
12 THE COURT: You can seal it. Sign it. We’ll hold
13 them in escrow subject to — you’ll hold them in escrow
14 subject to the order of the Court.
15 MR. MILSTEIN: I’ll do that, your Honor.
16 THE COURT: Any reason why the witness should not
17 now be excused?
18 MR. HAYES: No, your Honor.
19 THE COURT: You are excused?
20 THE WITNESS: Thank you.
21 (Witness excused.)
22 MR. FAHEY: Your Honor, if we take a short break, we
23 can — if we can take a short break, we can have Mr. Meadow on
24 the phone who we believe will be a short witness.
25 THE COURT: It’s 10 to 4:00 we’ll break until 4:00

The weekends are always busy for me.  Today there was a meeting with SOAP.   I cannot attend all their meetings but today I was able to make it.   SOAP helped my  daughter move on from a place my daughter in her own words described as “prison”  – (documented  in my blog ‘Abuse at the Bethlem.’.   The group is made up of mainly former patients (survivors) who have had shocking care – some have written about their experiences and some have appeared on You Tube –  The group has a lot of members all over the country but meetings take place in London and today it was nice to meet two new members. We talked of experiences we have had with the services and current news and shared information.  I then went with a couple of members to further our conversation in a very nice coffee bar before leaving to go home.

I had spoken to Elizabeth earlier in the day.    With the long Bank Holiday weekend approaching I hope to have her to stay once again and then there is a family celebration shortly after this but need to see if I can get time off as Elizabeth will need someone there in the house with her.  The last visit went very well and was the first time  and I think benefitted Elizabeth.

I have posted on Twitter tonight in response of 10 minutes with the GP.   I pointed out that my daughter has been given a lifetime of drugging and also I had a lot more to say but my conversation was cut short as it was ‘not fair on the other patients.  Anyway at least I got to see the GP which is more than I can say for the Consultant Psychiatrist and I have asked to speak to her.   When you point out that the dosage is too high of Clozapine it is wrong that a consultant psychiatrist does not listen. and neither do they listen when a patients complains of serious side effects.    If Elizabeth is in bed around 6pm and has to rest in the afternoon it is obvious that the level of this drug is wrong and I have checked on this fact.  It should be minimal drugs not maximum and I did not like it one bit when the team gave me Lorazepam for Elizabeth and paracetamol on top.  Well I said to them that they should not prescribed these drugs on top as she was on quite enough.   I also pointed out how highly addictive Lorazepam is.  Elizabeth did not need any of these drugs during her stay with me .  The best cure is to lie down I did not have the need to give any further chemicals to my daughter – she is on quite enough in my opinion and the wrong dosage – too high.  Something is not right when Elizabeth sat in the garden with a thick coat and jumper on a hot sunny day and her hands were freezing cold.  I am now worried for her physical health which seems to be declining but the team do not seem concerned.  

TI hope there is better communication between the GP and psychiatrist.  I cannot believe how the team previously ignored the fact she was on contra indicated drugs.  I have made a point in discussing all of this with the new team as I do not want any more mistakes like this to happen with Elizabeth’s drugs and highly specialised advice needs to be sought if Elizabeth is going to be reduced off this level of Clozapine ie 350mg which is far too high.   If NICE have not got this down correctly then I will be phoning them  – I need to check on a few things in their guidelines tomorrow.    I am glad that Elizabeth reports that staff at this care home are nice to her particularly as I have been reading the most shocking reports about care homes and abuse to children.     One of the new members at the SOAP meeting revealed his experience of shocking abuse when he dared to request he took his medication in the evening as opposed to the teams demands and I cannot see anything unreasonable in this myself and he was not aggressive and certainly absolutely no signs of aggression was present in this member at all so what on earth is going on when 6-7 members of staff came in to restrain him and force him  to take the drugs there and then.  There are some professionals who really seem to like exerting their powers and I have come across much in the way of arrogance myself with staff smiling smugly during meetings.     When I look at the blog of MH Cop it makes me laugh when he refers to these wards as a place of safety –  it is not a place of safety and several of the patients including my daughter begged to go to prison instead.   I can quite understand why as you at least know when your sentence comes to an end –  under the MH a sentence can be like a life sentence.    Seeing as these patients are weak and vulnerable they are open to abuse but who is protecting them.  If you look on the Board of certain Advocates they have psychiatrists so nothing is done fairly.

MH Cop recently highlighted Nearest Relatives and the law however I can confirm that nothing is done in accordance with the law especially when a Tribunal is due to take place and the team wish to delay matters or when a team say they want someone to be on a Section 3 their behaviour amounts to harassment and anyone else would be cautioned for this.      it is easy to play on capacity and confidentiality.  After a while a patient becomes weakened on these awful drugs and loses strength to stand up to the staff –  then if they have a nearest relative who disagrees with what they are doing they try and get rid of that nearest relative instead of working with the family.   The excuse in my case was always unfounded in that they accused me of intending to take her off the drugs or encourage her to stop taking them.  It would seem that the  team care about more about the pushing of mind altering chemicals than the wellbeing of Elizabeth and her physical state of health.    How many times have I said I would not take her off the drugs –  I am not a doctor and she would need specialist help but if someone is suffering on these drugs where is that specialist help?  Coming off the drugs is risky but not impossible if done correctly and properly monitored and in the right environment.  No different that coming off illicit drugs yet no fuss is made about this. 

Lately I have passed on some very good advice I have received to the team  that 100mg is the therapeutic dose for Clozapine.- the easy solution is to just ignore matters.  Certainly the care home is not the right environment for any titration to be done that is for sure. 

Vast amounts of taxpayers money is being wasted on psychiatric drugs given to patients who are treatment resistant which means they cannot metabolize the drugs yet you read about patients with life threatening physical illnesses who are deprived life saving drugs because of cost.  When so much money is being wasted on psychiatric drugs that can be harmful if they do not work I just cannot see the sense in this at all.    

Anyway I have had a good day today and just a restful day at home to look forward to tomorrow.

At least now Elizabeth is not being deprived of seeing her family like before.

 

 

 

 

 

PITUITARY FUNCTIONI can identify with some of this article: the struggle to get the correct treatment – the damage that can be done to health if not getting the right treatment – the symptoms – Elizabeth has described some of these and over the weekend on a bright sunny day she was sitting in the garden with a thick coat and jumper and her hands freezing cold. I feel Elizabeth’s health is deteriorating and am trying to get the team to take notice of this. I have been looking up what tests should be done in terms of assessments and have had to go right to the top to get advice from Professors. I admire the strength of Christine – it should not be like this that you have to fight and struggle to get assessments etc. There should be proper assessments given for everyone before labelling a patient with a psychiatric condition when all along they could be physically ill. Before giving psychiatric drugs there should be tests to see if someone can metabolize them. There is no consideration for someone’s physical health whatsoever and this has a wider outcome – a strain to hospital resources – a waste of money to the taxpayer as patients become ill with serious long term health conditions. I would like to see change in this system as a mother who has had more than one person affected in my family and seen what damage these drugs have done to my elder daughter and to others.

HOPE SHARING THE FOLLOWING ADVICE BENEFITS MANY PEOPLE AS IT HAS DONE TO ELIZABETH AND MYSELF:
“It is an anecdotal case study and not a proper scientific paper. Hypothyroidism following brain injury is fully understood and detectable via observation on a number of endocrine pathways and pituitary dysfunction is one of the conditions I examined over a six year research programme on hormonal markers in cancer. You would be better off not frightening yourself by reading this stuff, it is of little value. Hyperthyroid states may cause symptoms similar to mania and physical signs of elevated thyroid hormones can be detected in the blood. Hyperthoroidism is associated with excessive activity, emotional instability, difficulty in interpersonal relationships due to irritability, excitability, impatience and liability to explosive rage. In predisposed subjects a schizophreniform picture may occur of short duration.

Classic schizophrenia is thought to be linked to dopamine which is why most anti-psychotic medications are dopamine receptor antagonists. The condition that biopsychs call ‘treatment refractive schizophrenia’ is probably not related to schizophrenia at all. They are using that somewhat all encompassing term because the refractive patient presents with signs similar to classic schizophrenia. This type of psychotic behaviour is common to many psychiatric states and occurs similarly in toxic states. A startling clue to the two conditions being unrelated is that Clozapine, given to refractive patients is a weak dopamine receptor antagonist meaning the symptoms cannot be liked to excessive dopamine in the brain. Clozapine inhibits 5-HT serotonin, muscarinic, histamine and most interestingly alpha-adreno-receptors. This links this condition irrefutable with endocrine dysfunction. It is because the drug companies have refused to accept this that thousands of patients have been forcibly drugged with medications directed at dopamine receptors when there was never anything wrong with that neurotransmission pathway. Millions of patients in the last 30 years have suffered the most severe extrapyramidal side effects because the anti-dopaminergic effect of these drugs has severely and irreversibly damaged their nervous systems and neurotransmission.

If patients have defective pituitary glands the entire endocrine system will be affected, parathyroid lesions also present in florid psychosis. So many of these medics do not even know this that it beggars belief. Any scientist studying the effect of iatrogenic injury to the nervous system will be familiar with this. I spent years looking at iatrogenic transmission of degenerative brain disorders via contaminated human growth hormone, a product of the pituitary gland and the effect that calcitonin has on the increase in cell motility in solid tumour metastasis. It took me a long time to get anywhere near an understanding of these processes and I know that many doctors have no idea of how this works.

Pass on this info to as many as you think may be able to use it, as ever. You never know, you may be able to get someone to listen to it one day.

Barry

I have another reason to suspect that the condition that psychiatrists refer to as treatment refractive schizophrenia is connected to endocrine dysfunction.  The drug Clozapine is the drug of choice in this condition, usually arrived at by a crude process of elimination after administering the range of drugs available for the treatment of psychoses.
 
Dopamine has been the main suspect in schizophrenia for years but to date this has not been categorically confirmed.  Nevertheless the main treatment for schizophrenia has been the drugs in the dopamine receptor antagonist class with some degree of success.
 
In treatment resistant forms of psychosis these drugs do not suppress the more florid symptoms  which indicate two possibilities.  The first is that the patient cannot metabolize these drugs due to deficiencies in cytochrome P450’s, the principal enzyme responsible for metabolizing anti-psychotic medication.  It is logical that a poor or non-metabolizer will not benefit from drugs requiring P4502D6, P450IA2, P4502C or P4503A. All the current drugs in the psycho-pharmacopeia  require these cytochromes for metabolism and apart from the possibility that the patient may be deficient, many other drugs interfere with the metabolism and pharmacokinetic properties. 
 
The drug Clozapine is unusual in that it is a weak antagonist at D2 receptors.  This casts some doubt on the dopamine theory as a cause of schizophrenia.  Clozapine inhibits α-adrenoreceptors, muscarinic, 5-HT and histamine receptors.  Risperidone is also a weak D2 antagonist and operates on 5-HT2 receptors.
 
The effect on 5-HT receptors is interesting in that elevation of cortisol after prolonged life stress may predispose a patient to mental illness by interfering with brain 5-HT function.  This offers an alternative cause of psychotic episodes less reliant on dopamine levels.  Endocrine disorders are associated with elevated cortisol.  Plasma cortisol is increased in about half of patients with depression but this is not specific to any particular depressive disorder and occurs also in mania and schizophrenia. 
 
Treatment refractive patients may not be suffering from classical dopamine related schizophrenia at all but their psychotic symptoms may be a result of an underlying endocrine dysfunction perhaps in the parathyroid or pituitary.    It is hardly surprising that they would not respond to the classic psychiatric medications based on dopamine receptor antagonists.
 

You may as usual distribute this to as many people as you think may be interested and I am happy that you cite me as author.  I am happy to join in any scientific debate on this subject with anyone interested.

 
Barry Turner

(Senior lecturer in media law, public administration and science and environmental journalism)

(NOTTINGHAM TRENT UNIVERSITY,  UNIVERSITY OF LINCOLN)