http://www.goodtherapy.org/drugs/clozaril-clozapine.html

.. not recommended for use by older adults with dementia or dementia-related issues as it may increase the risk of death. If you have or have ever had heart disease, heart failure, irregular heartbeat, stroke, liver disease, kidney disease, diabetes, glaucoma or seizures, you should talk to your doctor before you take this drug. Tell your doctor if you have ever had urinary issues or problems with your prostate.
Let your doctor know if you have phenylketonuria. Orally disintegrating Clozaril tablets contain aspartame (Click for SHOCKING VIDEO), which forms phenylalanine.

Clozaril may interact with other medications or supplements, including antihistamines, antidepressants, antibiotics, antifungal drugs, vitamins, minerals, herbal products, sleeping pills, HIV medications, high blood pressure medications, and more. If you are taking other prescription drugs or supplements, you should check with your doctor or pharmacist before taking this medication.

A single tablet of Clozaril may be extremely toxic to toddlers. Confusion, involuntary muscle movement, nerve damage, coma, and respiratory arrest may occur if toddlers ingest just 50-200 mg of clozapine.

My comments:

This is the dreadful drug – a last resort drug for so called “treatment resistant Schizophrenia” for which there is no such thing anyway as terrible things happened to Elizabeth before coming under MH care and under their care as well.  Since Elizabeth has not been so drugged since coming home she has been talking to us about things. The P450 liver enzyme tests from Holland proved her to be a poor/non metaboliser.   As regards “Schizophrenia” it really is just an “umbrella” label and there are  other diagnoses in the files such as PTSD and Aspergers.   If someone has suffered trauma then PTSD is the likely condition and Elizabeth has not had the treatment needed to make her well as far as PTSD is concerned and trauma.     Clozapine/Clozaril is not recommended for PTSD and this is why I am not happy about such treatment.   Why wont they recognise PTSD when someone has experienced trauma like Elizabeth has?   Elizabeth has  also developed tachycardia on this drug Clozapine.  Elizabeth felt dizzy whilst walking has suffered fever like symptoms on this drug and shows signs of tadive dyskinesia – Iwould like a proper and thorough assessment done for the life threatening condition of  NMS.  That is why I took her off it.  The Consultant Psychiatrist recommends that she resumes taking this drug but Elizabeth does not want to and has told him that today. She is adamant she does not wish to take any more drugs.  I believe she should be allowed to settle down before being pushed drugs and that nothing should be forced upon her.   She does not wish to take any drugs but if she is not eating then she will not be feeling well obviously.  She sounded upset and said she was not happy yet she was so happy at home to be with her family and her cat who was so loyal to her when she was ill recently.

When Elizabeth  came home from the care home back in May 2014 she was on  Clozapine plus Bisoprolol and Senna as well as Lorazepam.   Elizabeth remained on the Clozapine/Clozaril for a while since coming home.   Doctors from my local area refused to budge on the quantity of Clozapine prescribed and when I told the doctors that this was considered to be too high a dosage by a leading professor and that patients could manage on much less this was ignored.   When the consultant psychiatrist visited last year he did not recommend any change in the quantity of this chemical being prescribed and Elizabeth was sent a letter to say that we were all happy about this drug when in fact that could not be farther from the truth.   So I realised that no one in my local area was going to help us.  Social workers have previously got involved in the pushing of this drug to my daughter and throughout the files the main concern of the team was compliance.  However not one of them in the team considered the damage being done to my daughter who had developed tachycardia on this drug and had palpitations.  When Elizabeth complained of her tongue being stuck at the back of her throat and high temperatures/fever there was no one to turn to as in the past no one was concerned so I set about the slow reduction of this drug together with supplements and special nutritious diet and it was a great success – Elizabeth remained on a small dosage without problem and said she was feeling much better.   She was no longer clinging to our arms when walking and more alert.  She was not going to bed at 6.00 pm every night but up late.  I realised that not one Doctor would help so in light of that I had no choice but to help my daughter myself according to her wishes.  “you have no idea Mum what it feels like to be on these drugs and to be forced to take them” …………….her words.    By doing that I have learned a lot about what is missing in care and also about symptoms.  I have seen withdrawal symptoms before and what it does to someone and this is how Elizabeth came under mental health services in the first place – withdrawal from Prozac and then withdrawal from Abilify.   None of these withdrawals were prompted by me but I understood why Elizabeth wanted to be free of them but nothing was done properly – no trauma therapy given and I know it is not just a case of coming off the drugs – the underlying trauma needs to be addressed particularly when abuse has happened to someone and Elizabeth has told us all about the abuse she suffered whilst under a local scheme.   I knew little about nutrition in the past but have become more and more knowledgeable – and this is the way someone can become well again.  It is all about gut health.  I paid for private treatment and everything that was needed.   Elizabeth suffered little side effects coming off the drug Clozapine until I took the very last tiny piece away which was so minute.    Elizabeth had developed a nasty cough but because we had already knew about NMS the obvious thing to do is to take someone off the drug and she also had tardive dyskinesia which is caused by the drug itself and not one Doctor would have cared to help in my area so I had to because I care about her physical health.  I accept that Elizabeth needs medical help right now but I do not think that she is mentally ill as described because she was able to talk to us freely and tell us all about what happened to her.  She was too afraid to go out places.  A drug withdrawal was not easy to do at home and my carers and I had to cope the best we could but then Elizabeth displayed classic signs of withdrawal NOT RELAPSE FROM MENTAL ILLNESS BUT WITHDRAWAL  –  This is the reason no one wishes to help as withdrawal from Clozapine is acute – withdrawal symptoms are mistaken for symptoms of mental illness.  There seems to be no facilities to cope with someone withdrawing from drugs such as this and little knowledge. Doctors do not want to take the risk.   It is far easier to keep a patient on the drug for the rest of their lives and not deal with the behaviour of someone withdrawing from the very drugs that they prescribe but by doing this they are not addressing the serious physical health or psychological problems that long term drugging can cause someone.

I had to deal with this withdrawal the best I could at home but when things became too much for me and a bit risky,  I spotted a facility in Kent that sounded ideal.    They would not take Elizabeth when they saw the symptoms she was displaying  of drug withdrawal and I then had to look for another facility and found one this is called REHAB RECOVERY   –  I was so happy at their response …….. instead of turning me away they were willing to help – Thank you Oliver and Jamie – you made my day.  I quickly told the staff involved but by this time Elizabeth was in the ambulance and unfortunately the Police had sectioned her under Section 136 which I asked for them to remove this as I had found the correct facility needed and was prepared to pay for it but the police refused to lift the Section 136 and had already made plans to take her to an NHS hospital (we went to two separate hospitals in Kent but she ended up in Maidstone) I was in despair as I thought she would just be transferred back to the same kind of wards she had already been on that would not have been able to cope with drug withdrawal and again she would be put back on huge levels of psychiatric  drugs  and be back to square one but now she is at Cygnet Hospital.  I reckon a place like this must be extremely expensive but nothing had been provided for two years since Elizabeth came home from the care home.    I was pleasantly surprised as when I visited last night I was welcomed onto the ward which made a change.  I have been banned from visiting wards before and this is not because I am aggressive or a volatile person as I have been described. This is how you are portrayed if you dare to disagree with “treatment” which is normally high amounts of drugs.   So the ward is not at all like what you would find under NHS care – the staff I met were wonderful and looked happy and they have been very helpful to me. They don’t turn around and say that they cannot discuss anything with you – in other words you are not excluded.   There was a brilliant ratio of staff to patient and Elizabeth is getting one to one care there.   Today I have had a call from members of staff.  Instead of ignoring they are listening.  Well done Cygnet Hospital – it felt good and reassuring to see that my daughter was in a place that I would describe the opposite of what I was expecting.  I was ready to contest the section and demand her release but Elizabeth at the moment is not well enough.  She said tonight she could not eat anything.   Proper assessments are done at this hospital too and I have asked Elizabeth to be assessed for the life threatening condition of NMS and to take into consideration the other diagnoses that have been ignored by my local area.     All this is being paid for by my local area but the fact remains that the facility and treatment being provided by Cygnet Hospital I have seen so far is a huge difference to previous experience.  If Elizabeth is to be put back on any drug it should only be given at very small dosage because she was managing on very little and doing so well and could think and could function better than ever before when she was drugged to the hilt. Elizabeth had wanted to be slim and she had lost weight from being taken out to nice places and was going out regularly with a close family friend and socialising.   I do not want her stuck on a hospital ward for very long and being stuck on a ward for many years.   I am hoping that Elizabeth will not be put back on huge levels of drugs again.   I am also hoping that I will not be displaced as the Nearest Relative or next of kin yet again because I have gone out of my way to obtain proper decent care and was prepared to pay for it all myself thus saving them a fortune. I would pay anything to get the very best of care in a lovely environment.   The farm would have been that kind of environment – healthy.  I believe this facility should not be ongoing for too long and that Elizabeth should be allowed to come home again and be with her family and see her cat again.    We also have a holiday booked in Cornwall and Devon.

Conclusion:   THERE NEEDS TO BE  FACILITIES TO COPE WITH THE EFFECTS OF WITHDRAWAL FROM PRESCRIBED DRUGS SUCH AS THIS SO THAT THIS CAN BE DONE SAFELY RATHER THAN JUST CARRY ON WITH THE SAME TREATMENT FOR THE REST OF SOMEONE’S LIFE AND IGNORE PHYSICAL HEALTH.   THAT IS WHY WE NEED FACILITIES LIKE CHY SAWEL. 

This morning I had quite a journey to make.  I had to get a cab, get a train to Victoria and then come back into London via the Victoria Line and when I got home even more hassle as my younger daughter was driving my car and instead of leaving the keys out somewhere concealed she had put them in a cupboard in the living room.  How on earth am I going to get those to get into the house.  So I had to order a cab and pick up the keys from a friend and bring me back again but whilst I was waiting outside the new lawnmower arrived and I had to put this in the back of the car along with all my possessions.  At last I am inside the house and I am busy sorting out what to take for Elizabeth when I drive down there.  In Victoria I was overwhelmed with support and was busy making enquiries which I will tell you all about later.

So far I have a good impression of the way someone spoke to me today over the telephone from Cygnet Hospital.    Again I will tell you more later.  Elizabeth is on a special diet and I have made sure I have packed the Himalayan rock salt and other good things.  When I asked how long Elizabeth would be there as at Cambian she was there three years which is far too long and came out disabled!  I hope this will not be the same as we want her home where she belongs.

So Elizabeth is not on any Clozapine and has come off this chemical and I have made a point of saying there are numerous diagnoses.  I am going to show the team the therapeutic doe of this chemical not the huge amount of 350mg.  I am only too aware that hospitals drug to the hilt and that being in a hospital will be disturbing for Elizabeth so I do not wish for this to be long and drawn out and it is not necessary for this to be the case.  They just need to sort out Elizabeth’s cough and I have researched that everything can be resolved if her dopamine is normal but her brain thinks it is sky high causing the problems – to balance the balance between Dopamine and Seratonin you therefore have to:

INCREASE HER SERATONIN (feel good chemical).

I wonder if I will get to meet the consultant psychiatrist – the private consultant psychiatrist at the luxury rehab said he was looking forward to reading my blog and now he can read about how I have looked into everything with some help if I’m honest – I want to tell him about the worrying symptoms I have seen and this is why the Clozapine has been reduced –  no one in the local area cares to help as regards any reduction, neither are they  concerned about the physical wellbeing of my daughter and they all assume she has a mental illness and refuse to accept that the treatment they have given may be wrong.   I have proven this by having the P450 liver enzyme test results “poor/non metaboliser” and no-one can argue with the World’s leading expert in metabolism.  I intend to take the result along to show the team.  I will look for the care plan to show everyone what has been provided for Elizabeth in two years since coming home from the care home and that is nothing.   Even if Elizabeth did not wish to meet the team who were the very people who took us to court so no wonder why, why have they discriminated against her – is it just to get back at me I wonder because my name is mud in the files.  I am going to write to the consultant psychiatrist next as problems that have not been addressed and neither has the trauma that she has experienced in the past.   So many horrible things have been said in the files and Elizabeth has been no trouble at all for the past two years.

It is about time investment was made for proper facilities for someone with psychosis to go into and there is absolutely nothing and that is why I support Chy Sawel  –  Everywhere you get the same response practically and I thought I had found the perfect place – the very place Elizabeth could have got better and they wouldn’t take her.  I then went out of my way making phone call after phone call to find similar places and again mostly I got the same response however I must praise one place in particular who did not refuse to have Elizabeth and I was gutted as this had only six people.  In contrast there are 14 and this is not so good in my opinion as Elizabeth needs a calm and peaceful environment so  I need to write my letter and tell the consultant psychiatrist to immediately do the necessary assessments so as not to hold up Elizabeth’s discharge as I am afraid a hospital is not the right place for her to be.   The hospital is in Hertfordshire so that is not too far away –  it is notably another private sector hospital.  Why isn’t the NHS being refurbished as these admissions are extremely expensive and once again the same process of defending the right to lift that section yet someone may behave totally different whilst cooped up on a ward in a noisy environment than in a peaceful homely environment and I have more than proved this fact.  Elizabeth does not like noise.

Anyway must get ready now to go and visit Elizabeth.  Will let you all know later how I get on. It is quiet in the house without her –  I just wish that a proper facility was available like Chy Sawel and I would move to be near such a facility.

• Elizabeth is here tonight has just been assessed by AHMP Gemma but the two doctors who carried out the assessment ie  Drs Singh and Sayd have come and as far as I know gone and did not bother to see me as I would have liked them to.  I am contacting solicitors  – Elizabeth was happy at home with her cat and surrounded by family – I was told that my local area would be funding a new hospital placement  –  this is highly expensive and it just doesn’t make sense to me to spend all that money.  I have mentioned to the AHMP that I was willing to pay for private care myself and that I had found somewhere but they do not wish to know.   Elizabeth was on a lot less drugs over two years since coming home but when we noticed serious physical health symptoms we tried to stop the last little bit if Clozapine but perhaps if she had been given Clolline or a dopamine antagonist suppressor then she would have been Ok –  I don’t believe and neither do the rest of the family that Elizabeth is “mentally ill”.   Abuse can come from all sources not just home and family.  The AHMP had never heard of open dialogue yet this is on offer in the area of Kent –  I believe the plan is to send her once again onto a ward, ignoring what everything we have said –  the symptoms I and my carers have seen of Neuroleptic Malignent Syndrome. No one wishes to admit the drug treatment could be to blame.   I am saddened by the fact they are looking for a bed no doubt far away from home and family again.  More legal activity – more expense .    All that was needed was  stabilisation  for instance  –  a dopamine antagonist suppressor.  Sadly  the first thing on offer is all too often drugs  which is my sole reason of complaint –   The care that has worked most of all has been being at home surrounded by people who really care – her family The area where we live  have tried time and time to displace me as a mother who really cares for the physical health and wellbeing of my daughter and who is still here waiting at Maidstone hospital at 3.00 am.   I have no car with me as I was driven to this area by Elizabeth’s sister –  I have no idea if she will be transferred somewhere tonight or tomorrow.  I would arrange for a cab to take me wherever .  All of this yet I am prepared to pay myself for a centre that have just six beds and more one to one care offering therapy and have found a place  thatcould help her with her one of her diagnoses of PTSD as it has been suggested she should have had intensive train therapy.   Elizabeth has such a wonderful friend who really cares, a family who love her but sadly according to the files I have been labelled myself very badly as I have dared to disagree and have complained about the overdrugging of my daughter.   I am critical because the files state she has been on maximum level of drugs concomitantly prescribed and it is the drugs that have destroyed my once happy daughter who wishes to be drug free.   I am also  rightly critical of the fact that several extremely serious incidents have occurred under my local area of care – Enfield Mental Health trust and there is integrated care alongside that provided by Enfield Council and this is who want to fund such a placement at huge expense to the taxpayer. Even whilst on huge levels of drugs,  Elizabeth has told us the most disturbing things, following her coming out of care after three years and in that care home Phoenix House apparently she had no food as noted in the files and all of these things have resulted in Elizabeth not wanting to see any MH professionals especially those behind the deprivation of drugs is social services based at Park Avenue and Lucas House hence my story called “get her back we are paying for that”. –  I am now seriously worried where Elizabeth will be sent – probably hundreds of miles from home yet again –  I just want her home again –  I have been so happy to have her home and myself and carers have gone to so much trouble to get healthy food and look after her physical health.  I was told it could be  a private sector care hospital but look what good Cambian did for her –  she ended up more disabled than before holding on to your arm like an elderly person. It was hard to get her out .   The placement I had found had a bed available to go to tomorrow  and sounded so nice –  a few weeks would have been enough to stabilise her and I would have paid saving taxpayers money.  My local area who wish to make cutbacks etc is Enfield Mental Health Trust and you would think that they would be happy I am willing to pay for care myself.    I will let you know when I hear more as I am waiting as I want to be able to see my daughter before she goes and to know where she is being sent.  I shall contact solicitors tomorrow as Elizabeth should have the right  of choice and I want her treated fairly also I thought there was a shortage of beds –  well I don’t want her to be once again treated like she was when she was at Cambian –  if you are paying I have found you get treated much better and this is why I wanted to pay.

This is a rare life threatening effect of being on anti-psychotics like Clozapine.   Elizabeth has complained to myself and my carers of feelings of burning up and she told one of my carers that her tongue “locked” in a position  at the back of her throat temporarily – she lost control of her tongue stuck in an awkward position –  please can you all pray for my daughter Elizabeth right now.   I am  at Maidstone Hospital in Kent.   I am looking for a specialist centre to pay privately so that Elizabeth can recover and have intensive trauma therapy and then come  home as soon as possible.  I want to move from my area to an area where the professionals are kind and where you are not constantly taken to court, an area where they have open dialogue.   I  am going to sit here all night and wait in this hospital –  I have gone to huge lengths to find a facility  and they have a bed for Elizabeth – only six people – a small place and I am prepared to pay for this.  However I do not know if Elizabeth will be released tonight – she may need a few weeks in such a specialist private facility –  at least they won’t take a phone away and treat her like rubbish.  I would give my house to pay for the correct treatment as Elizabeth means so much to me . In my local area the staff have been extremely nasty behind our backs –  all they care about is compliance  – not about physical health and no notice is taken as regards physical health.  We only say the psychiatrist in December 2015 and yet Elizabeth has been home since May 2014 and after all that happened it is no wonder she did not want to see them as they behaved like bullies.    I thought I saw a brilliant facility here in Kent –  a beautiful farm in a lovely area –  wonderful facilities and kind staff that could really help Elizabeth and I thought this was the right place for Elizabeth to get well.  Prior to arriving in Kent  I had been up with Elizabeth several nights as she has a nasty cough and this was making her choke to the point of being ill.  I slept one night with her and our cat fluffy has been so loyal –  he has been sleeping at the end of her bed each night.  He has been following Elizabeth around –  Elizabeth said “you don’t know how it feels”.  Sure enough –  I have not been on such chemicals let alone sectioned or forced to take drugs when proper therapy is really needed but no way should Elizabeth be put back on clozapine at 350mg –  several doctors have agreed with me –  Elizabeth has managed wonderfully on a tiny dosage and we have not had one bit of trouble in two years –  two years of not having any professional help whatsoever –  I expect Elizabeth is tired now and possibly asleep.  We have been waiting around practically all day and I was gutted that Hay Farm would not take her –  I so wanted a natural environment not a hospital ward –  I so wanted her to have the kind of specialist help that only someone who has gone through PTSD could offer.   Intensive trauma therapy is what she should have been given but unfortunately my local area have given only a care plan giving nothing as having read what has been said behind our backs how can you trust those who have tried to sever contact,  spent thousands on costly court action,  caused a divide in the family but this divide has closed due to seeing her thoroughly improve upon coming home after two happy and joyous years where Elizabeth was able to join in all family occasions and be with the people who really care – her family.  I wish to move with all my heart but at least in Kent they have Open Dialogue.  I wish we had this in my local area.  Anyway I am going to stay close to Elizabeth all night –  I am not leaving Maidstone Hospital. Have to wait here until 10 pm another hour to be seen and I want to pay for the right care not all about drugs and get this care immediately.

http://www.standard.co.uk/comment/comment/nick-clegg-we-ve-made-progress-on-mental-health-but-there-s-still-work-to-do-a3194841.html

I would say to Nick Clegg that there is a long way to go before anyone can say there is any progress.

Currently in the UK young vulnerable people are being held for many years in psychiatric institutions when many have not even committed any crime.  How many – I would like to see the figures for this. The reality is that if someone is seen not to manage well in the community independently this is an excuse to keep them locked up for years on end and I am in touch with cases like this.  Elizabeth is a good example of where someone has come out of the system disabled worse than before.  She is now too afraid to go out alone, despite the fact she has a key and can come and go as she likes.    When a patient is sent hundreds of miles away from home as care locally has failed, they are not allowed to go out freely at all.  Patients are being over-drugged and denied basic human rights.  There is a heck of a lot more work to do Mr Clegg and when I went to see Mr Burstow I suggested a room be provided so that not just me but the other parents can be included in any meetings.  The whole system is extremely wrong and there is lack of accountability, there is lack of communication and this is why I am in favour of open dialogue – I am not surprised in the slightest bit that there are not enough beds.

I have featured in my last blog the kind of care myself and other mothers would like to see set up in the UK – Chy-Sawel looking at a nutritional approach and providing proper assessments unlike the care currently being provided which is practically  all about drugs – perhaps there should be proper testing like I have had done in Holland available to everyone and then that would ultimately save money and the leading professor in Holland suggested nothing like the high dosage of drugs currently being prescribed.   I have now proven by these tests that she is a poor/non metaboliser and I am happy to share what tests have been done so that everyone can benefit.

Elizabeth has just received her care plan and absolutely nothing has been provided but this has not surprised us at all.  We have finally got this after 23 months and I see this as ridiculous.  I also feel that Elizabeth has suffered discrimination just because the team do not like me and that is solely because I have criticised the maximum drugging of my daughter and quite rightly so.  I have no regrets about this at all.  Anyway the care plan is in draft form and there are some mistakes that need correcting  the most negative comments have been written about Elizabeth and I intend to correct these along with my carers who may also wish to contribute. It would seen that under Psychiatry, once a label has been dished out this is a license to drug someone for life like a never ending prison sentence regardless of whether there is doubts as to correct diagnosis.   A proper assessment only costs £5 – £600 – cheaper surely than giving the wrong treatment for life.  Of course if you dare to criticise even the art therapist gets in on the act of diagnosing in my local area and everyone I know is laughing.  I am laughing most of all as I would like to talk about this on Twitter directly –   is his title Dr as well as art therapist?

This week Elizabeth has just had a visit from the benefits officer – He came to my house as Elizabeth cannot get out and I understand from my carers that his visit was very brief which I thought was good as Elizabeth is afraid of meetings.    Elizabeth could not manage to get herself to appointments – she has not been out of the door on her own, despite being encouraged to do so since arriving back home from the care home.  She has felt dizzy when walking – a side effect of the Clozapine.  She was making sharp arm movements when walking and I have seen slight tongue movements from time to time – a sign of tardive dyskinesia.   Even answering the phone is an ordeal for Elizabeth who dropped the phone in fright the other week when someone asked for her by name  but that is not surprising at all when you have been taken to court in the way we have and been subject to teams of professionals who came only to report back to social services for the purpose of court and to make the family look bad.

If it was not for her carers, Elizabeth would be stuck indoors which is hardly ideal and I am delighted to have a very good carer on board who is encouraging her to go out places.  Slowly but surely she is regaining her confidence and no longer is physically ill before going out.  I am disappointed there is no mention of any direct payments within the care plan and I will let you all know what response I get after I have sent this back duly corrected.  There are major cutbacks in my local area whose better care fund stands at £20.585m.  They are saving huge sums of money now Elizabeth is no longer in care.  I am spending a lot on decent organic food as this is so important as part of her nutritional plan.

So today Elizabeth is out with her carer which has given me the opportunity to visit the elderly lady who I have known for so many years.  I helped her make a shopping list as food was running low.  There was a meeting held at Council offices that I got to find out about but could not attend.   It would appear that I am the last person that the Safeguarding team wishes to speak to as just like with Elizabeth I am happy to be very supportive  – this elderly lady may well be disabled to the point of not being able to speak but I shall be extremely unhappy with my local Council if they try and say she has no capacity like they did with Elizabeth and that is of course untrue.  She has full capacity.   I have been in touch with the  Chief Executive of the mental health,  The leader of the Council and the Director of Social Services.  Why then do I need yet another person being assigned to respond to my letters/emails.  It is much simpler to stick to writing to those mentioned above rather than someone completely new.  This is why things are never dealt with properly in the first place.  I now want action not words/ correspondence.     Everyone in my family with support this elderly lady stating she HAS GOT CAPACITY.    I can prove it too. If she wishes to stay in her own home  as she does then I sincerely hope that my local Council respects her wishes.  I will keep you all informed.

Just reflecting on the brilliant writing of Elizabeth’s advocate from the Bethlem  “Bedlam” as it’s known or “Hell on Earth” (Elizabeth’s description)  he has written good words on the subject of Governance.  As it is rather a lengthy piece of writing I am going to feature a few main points:

“More and More governance – you’ve got to be kidding”

And you’re so proud of your latest ****

Where has the training, coaching and things like SLaM Partners got us in the past?  absolutely nowhere.

More and more time as far away from the coalface as possible!

The biggest problem is that no one expects anything of anyone so that no one can fail!

“I can substantiate “in spades” everything I am saying here, and I will do so publicly if I have to”.

He then suggests the only answer is to put him in charge of creating and delivering the necessary transformational new paradigms. I personally think that there is so much wasted talent if you look at patients who could otherwise be working positively within the team, especially those who are very enthusiastic and outspoken in their comments like Elizabeth’s Advocate.  Their contribution could be extremely valuable and as I can see there so many copied in to his email and I am impressed as this is what I call great communication – a far cry from what I have come across.

Another brilliant writer I have previously featured is Eric Coates and I have seen the following posted by him and would thoroughly agree.

 “I am not a conspiracy theorist in any way (except in the way that, if you’re not totally naeive you realized that, yes, politicians and corporations and potential mates are all very calculating creatures). But it strikes me as an odd coincidence that “antipsychotics” — once known as “major tranquilizers” — have the convenient effect not of healing but of keeping the “psychotic” very quiet, which results in their needing food and housing and medical and other subsidies, but also of killing them off at an average of 25 years before their otherwise expected life span, which would, of course, take them off the welfare rolls. I am not, as I say, a conspiracy theorist, but the psychiatric profession also designed the Holocaust by first happily agreeing to exterminate 250,000 “schizophrenics” — the part of history that no one talks about — and it would not strike me as at all strange or out of the character of the average psychiatrist I’ve known to do the same thing or at least to ignore it while it is happening. They kiss the heels of their masters, and the drugs are what pays their bills.”

Yes,  well said Eric    Schizophrenia is just a label given by Psychiatrists in order to drug and disable someone but the Government goes on about anti stigma but where is the scientific proof of this label – there needs to be action in terms of proper assessments as people like Elizabeth are being given the wrong treatment when in actual fact the Government should be looking to improve the training of Doctors on nutrition –  I have found the most excellent care and I  am going to prove to every professional how wrong things are – the drugs are there to silence someone and can be used when things go wrong –  however Elizabeth is “treatment resistant” – poor or non metaboliser so these chemicals have not worked and therefore Elizabeth has not been silenced.  Now all my carers know everything and all the more reason that there is proper communication in an open and honest manner.    It is good that there are organisations such as ISPS where I take Elizabeth to show her that there are some good professionals but where is the choice in care both treatment and facility?  I have been speaking recently to quite a few mothers who have young people long term incarcerated – stuck in the system for years  and none of them are happy.  I can understand why –  their sons and daughters are being drugged enormously and many of these parents  would be happy to speak to the press.   I feel most fortunate that Elizabeth is out of the system and is starting to show signs of improvement thanks to being in the right environment and that is because one of my carers is an expert on nutrition.   Chy-Sawel  wish to provide a facility with emphasis on nutrition and proper assessments leading to correct treatment.  I would like to see this set up in the UK as there is nothing other than the usual facility that provides treatment of forced drugging once someone is sectioned.  Worse still the barbaric treatment of ECT is given in the UK.    I know where the money is being wasted – where families have to fight to get their sons and daughters out of the shocking “care” system – the cost of these institutions amounts to thousands and thousands of pounds per week of taxpayers money so no wonder they do not wish to let go of someone.  It is profitable for lawyers as tribunals can be long and drawn out.  Noone is in a hurry to see a patient leave when they are getting paid lots of money each week.

 I would like to see a fairer system and some of the cases I am in touch with brought out in the open – it would be cheaper to give more support to the families involved.  There is no mention of support in Elizabeth’s care plan – I do not think she has been treated fairly at all but I am so very lucky to have people helping me right now who do care – non professionals –  without which I would have to move to another area but we have asked our local MP about being transferred to an area where there is Open Dialogue.    It is a post code lottery and for those who live at home there needs to be more choice and I do not agree with forced drugging and ECT.   The remarkable parents I am in touch with continue to fight for the release of their sons/daughters, some of whom are being denied basic human rights and contact with their families .  It is terrible what is going on in the UK and what the public don’t know is affecting everyone when you look at the closure of hospitals, A&Es and as for Junior Doctors I fully support their campaign –  this money being wasted under the mental health by sending vulnerable people away for years on end to the point of disablement, drugging them at huge doses of mind altering chemicals ie 600mg lithium and 800mg Clozapine – just one example – some are drugged so highly on numerous concomitantly prescribed drugs and this all needs to be brought out in the open.    I have said to all the parents they are welcome to use this blog to highlight what is going on their local areas and how long their relative has been incarcerated and what extent are they being drugged.  All this should be headline news at it is affecting so many people and being kept very quiet.   Taxpayer’s money is being wasted and could be better spent in my opinion.

Very good premises have been viewed by Sandra Breakspeare that would be suitable for Chy-Sawel who are holding their conference on 13th May as I have previously posted.  Doctors who care about patients physical health such as Dr William Walsh and Dr William Shaw should be involved in training up doctors to look at underlying health problems – gut health nutrient deficiencies and allergies etc . There needs to be such a specialist facility in the UK providing accurate treatment rather than that currently provided on a trial and error basis.  If it is not possible for patients to completely come off the drugs then they should be on minimal amounts not over-drugged and this surely must in any case be against NICE Guidelines –  it is apalling  what is going on. I am bringing Elizabeth and my carers along to the forthcoming Chy-Sawel Conference.

I believe environment to be very important and as you can see that I have featured on Twitter even more than just mind altering chemicals.  I have posted about smart meters which is something that we do not want for health reasons-  Elizabeth needs to have a natural environment and also I have featured chem trails and additives in food.  I look very carefully at the labelling of foods now and only buy organic produce.

I am fed up with hearing all these campaigns on obesity when  these drugs doctors call “medication” are the cause – they cause tiredness, increased appetite and craving for sugary/unhealthy foods.   I have seen huge improvement now in Elizabeth and it is all thanks to my carers.

I’m looking forward to attending this forthcoming event with Elizabeth and possibly one of my carers, an expert on nutrition who I took to meet Dr William Shaw.    I’m looking forward to meeting Robert Whitaker again who I last met at the CEP’S Conference “More Harm Than Good” held at Roehampton University.    Sandra Breakspeare has organised wonderful speakers to take part in the 7th Conference of Chy-Sawel and I hope to meet up with all the other parents who are badly affected having sons and daughters stuck in a system that is failing so many.     I would like to draw attention to the fact that Sandra is trying to raise money in order to provide a much needed facility in the UK (suitable premises have been seen) so anyone interested in investing in this wonderful project please contact Sandra Breakspeare (info@chy-sawel-project.co.uk)  Tel:  07814489701 and 01736 795748 .    When beds are overflowing and demand high for mental health care/services it is obvious that the current care treatment is not working and there needs to be choice and proper assessments.   

  get-her-back-we-are-paying-for-that-17-05-15

My above true story of when Elizabeth came home is why we need change and decent humane care. I attach the link for the Chy-Sawel Conference which includes Agenda and booking form below.   Elizabeth has been at home now over 20 months and care is through peer support, close friends and family.  

I intend to drive down and  stay a few days in Cornwall prior.  The Conference will be held at Sandy Park Conference Centre (Estuary Suite)  EXETER  Devon EX2 7NN on Friday 13th May.

I attach the link for Agenda and Booking Form and I’m looking forward to meeting up with everyone.  There are parents I know who are attending who are who have sons and daughters imprisoned in the system for many years, despite not having committed any crime yet treated like prisoners, deprived of the human rights and spending time with their families and these patients who are often sent many miles away from home are drugged at enormous levels.  Yes, this is the shocking reality about what is happening in the UK today which is not being publicised in the national press.   No institutions are in a hurry to let go of someone go quickly when they are receiving thousands of pounds per week and it is all about “business”, not care.    These young vulnerable people are left to go downhill in institutions and Elizabeth was sent to Wales and discouraged from  having family contact – supervised phone calls and restricted leave.   As a result she has come out of the system disabled.  This is why we need choice such as  CHY_SAWEL as they intend to take a very different approach that is humane and focuses on nutrition as this an area that is neglected under current mental health care.  It is good to see Nick Putman attending who is promoting the Open Dialogue Approach.  As I have told my local area this is what is needed – an open transparent system of care like in western Finland.

A new approach is definitely needed and Chy_Sawel is the answer.

CHY+SAWEL+CONFERENCE+FRIDAY+13+MAY+2016 (1)

Elizabeth is out at the moment with her carer.    If it was not for my carers I don’t know what I’d do. Elizabeth would otherwise be stuck indoors and I would have to review everything in my life, including where I live and would have to even consider moving.

The other day, the telephone rang and Elizabeth went to answer which is something she would normally avoid doing.  When someone asked for her by name she dropped the phone thinking it was social services but it was in fact just a sales call.  Such is the effect caused by a team of professionals who used bullying tactics  at the time when we were due to be taken to Court.   Incidentally we have not been refunded the fares/expenses for the court which I think is really bad after all this time and we can all see the full extent in the files of how team members back one another no matter what and they all stick together.     This experience has had a devastating effect on Elizabeth and my carers are not too happy either at the comments made.  The result is that there is no trust.      It is now over twenty months since Elizabeth has come home and it would just be so nice if some of the people who are helping me right now received some recognition for what they are doing voluntarily and expenses fall on me but no-one cares.     Whilst the local Council wish to increase council tax/make savings by cutting back on services there is no end of money when it comes to taking people to court and all of this is decided as being in the “best interest” by certain professionals who really know little about my family. You certainly cannot go by the files as even past history is incorrect and there are plenty of errors so I can see.   No change in treatment has been suggested by the consultant psychiatrist and from what I can see from the files, the main concern of all the professionals was that Elizabeth complies with the “treatment” of  last resort drug Clozapine.  Clozapine is supposedly a “wonder drug” for Schizophrenia in cases where other chemicals have failed but Elizabeth is also recorded as being “treatment resistant” and this means poor/non- metaboliser but what about all the other diagnoses in the files and my request assessments have been ignored.  I do not have a good word to say for this drug Clozapine or any of the other drugs given.  This means that treatment could be entirely inaccurate and the team are taking the easy solution by ignoring the test results from Holland and   continuing with drugging for life by Clozapine.  No-one in the team will take any kind of responsibililty and if you dare to dispute their decisions regarding treatment you get the kind of treatment I have previously documented.      If other similar cases of wrong diagnosis are disputed these should be fully investigated and this can only be done by proper and thorough assessments like I have obtained in Holland by the world’s leading expert.

Today I had a call from someone as I had written to everyone in my local area such as the Leader of the local Council, the Director of Social Services and the Chief Executive of the MH Trust as well as my local MP who Elizabeth and I went to see not long ago and we asked to be transferred to an area where Dr Rassaque is coordinating Open Dialogue.    We have met some very good professionals by attending conferences organised through ISPS and INTAR.   Unfortunately I heard that Open Dialogue is apparently not being considered in my local area but in other areas I believe such as Nottingham and Liverpool things are moving forward by professionals who do listen and recognise the need for change and I am glad to see that we are not alone in waiting something better, a system of openness and honesty that does work unlike at present.

I have found wonderful care from a team of helpers, close friends and family but when someone has suffered trauma they need specialist help but who can you trust when even the art therapist likes to come up with labels.   Incidentally, I am waiting for these labels to be removed from the files but I have not heard from the CEO about this yet.   I think there needs to be other corrections made to the files and I need to go through them thoroughly and make a note of all of these errors but it is a question of when I can get round to doing this as I am so busy.

Elizabeth is due to undergo a review of benefits soon – I will let you all know how this goes and I have had to ask for my carers to be present at home.    How can someone deal with such matters and attend meetings and deal with appointments etc when they are too afraid to leave the house alone let alone answer the phone and to overcome this and, as Dr Bob Johnson recommended in his report “intensive trauma therapy” should be given. The fact that Dr Johnson’s report has been ignored is the reason Elizabeth has not got better and suffers from Agoraphobia and relies on my carers to take her out places.  As nothing has been provided for my daughter in 22 months I have been trying to find out about what is available myself.   Elizabeth needs help with cooking, washing up, ironing, prompting to do things in general – she is like a prisoner of her own mind. Elizabeth finds it hard to speak to people as she has been imprisoned in coercive environments.   Today, following a recent letter I’ve written, I had a call from someone wishing to investigate my concerns but I said that I can see exactly how complaints are handled and dealt with in my local area and always the answer comes back that they are “satisfied” and even excellent is a word mentioned to describe the care provided.     There is no accountability as noone wishes to admit anything to be wrong or make any necessary changes.

On a brighter note I had a good weekend last weekend and went to China_Life Tea where they had New Year celebrations taking place.  Elizabeth enjoyed this and the buffet and talks on teas.  I have a good selection of teas at home and now have no end of healthy food as I take more notice of the labelling on products.   Even in a health shop you still need to take notice.  Luckily one of my carers is an expert in these matters.

Elizabeth’s Birthday was a week ago and she went to see the rest of the family and they all went out to a vegetarian restaurant in Cambridge.

As regards the future for Elizabeth it is too early to say.   I would naturally like her to do something good with her life and have a job- we do not even have a care plan after all this time yet there is money in the Better Care Fund and now I have read an article in the Evening Standard about this fund but I would dispute the amount as I have seen billions mentioned nationally.    There seems to be a huge discrepancy.

To place someone in care costs £60000 a year and hospitals are even more astronomic.   The result is that Elizabeth is now disabled to the point of not going out like she once did, no longer able to go shopping alone or get on a bus as she once did.  No longer to even walk down the road alone a short distance and I have tried to encourage her.   Elizabeth has become dependant on others sadly and I do not know what any further investigation into my concerns will bring – it is action not words that are needed.   I said today that the whole system needs to be changed  – I believe no-one should be written off and this is where money is being wasted by writing people off and subjecting them to a lifetime of drugging and by keeping vulnerable patients incarcerated in hospitals/care facilities for years and years on end, drugging them to the hilt resulting in disablement.

It is a pity there is nothing better in the UK in terms of facilities and that is why I would like to see Chy_Sawel set up.  The Chy_Sawel Conference is coming up soon and is going to be held at the grounds of Exeter Chiefs – Sandy Park Rugby Club commencing 9.00 am on Friday 13th May – Exeter, Devon.   I shall soon be posting more details regarding this and the Agenda.  Robert Whitaker is speaking amongst other wonderful professionals.    It is natural that parents want the best in terms of humane care ie.,  care that is not all about forced drugging or ECT and proper assessments given with a strong emphasis on nutrition.   A place that gives proper assessments and not all about drugging at extreme levels like current treatment is needed.  It is no wonder beds are overflowing under the current system – it is because the treatment is WRONG!

Today Elizabeth and I have been helping someone who we have known for many years (an elderly lady who is now very disabled and living at home).  She cannot walk, speak and has to write everything down on pieces of paper.  A few weeks ago I bought her a board to write on but she has gone back to writing on pieces of paper again.  Today I met with her social worker as a new agency has just taken over and it would appear no information has been passed between existing and current agencies as far as access to money is concerned so carers have no money to buy milk, bread and essentials and then I get a call that shopping is required.  There must have been previous access to funds prior to this agency taking over as there was never any problems like this.     Because there is no money to buy shopping this had led to a situation where there is no milk, bread and basics in terms of food.   Myself and carers have had to go out and buy food etc more than once.   It was attempted by the social worker today to try and take her to her bank but there was no wheelchair or transport arranged and I had to drive to a neighbouring area to pick up a wheelchair.   She refused to go in the wheelchair and I was handed another shopping list of things that were needed.  After I had done her shopping I took Elizabeth home and had to go back with the shopping and food I had purchased for her.

My thoughts turned to Elizabeth who has had nothing since nineteen months having come home from care but then that is understandable as she has not wanted to speak to the social services team as they have been so nasty behind our backs but today we saw another team of social services who I have previously had good experience with in their support for my father who had Alzheimers. Social Services have now taken control of the matter but it is not a good situation where you are asked to do shopping and there is no means of reimbursement right before Christmas, especially when there is no support for the person you care for (Elizabeth) which means expenditure falls on my shoulders.  What is happening when there is a Better Care Fund.

I think I have been blacklisted.  I always used to hear about all events going on at the local carers centre but now hear nothing and am no longer invited or informed of their parties or events or even receive literature.   They were the first people I turned to when Elizabeth came home from the care home but like many organisations, they rely on funding and I suppose this is why we never hear anything any more from them like we used to.

I cannot really sum up any enthusiasm for Christmas this year and have struggled to plan and look forward to this occasion as I once used to.    Every Christmas I take dinner to the elderly lady and I think that Christmas is a very sad time for so many people, especially those you who are elderly and alone or under mental health care and isolated for instance.  At one time, I had my father who had Alzheimers also to visit and cater for at Christmas.   I shall be thinking of those who are deprived of being with their families (and I know several such cases under MH care)  I would like to feature such cases on my website where young people are being long term incarcerated for many years and some do not get out yet many cases are not cases where patients  are violent and a threat to others.    I remember one year when Elizabeth was brought home a week or so prior to Christmas  Elizabeth was  flanked by two nurses whilst at Cambian like a prisoner.  It took hours to drive from Wales all the way to my home in London and because of bad traffic on the roads she only had about two hours at home before they had to set off back to Wales.  Now I can see that the rest of the family were treated differently and were granted unescorted leave and extra leave compared to me.

I am very happy now that Elizabeth is back home as also when someone is away from the local area there is no support  or having to stay in overnight accommodation and this can mount up. I just wish that something can be done for the other cases so that young people are not deprived of leave with their families at Christmas which I think is a breach of human rights and this is  going on in the UK today not being reported in the press.