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Monthly Archives: March 2016

Since 15th March, Elizabeth has been held at Cygnet Private Hospital, Stevenage for assessment purposes under Section 2.  There was an initial two week period without drugs (three weeks in total) where Elizabeth seemed to be improving day by day and was stable without any problem and she was refusing every drug on offer.  We have never seen her look so good and she was alert being without any drugs and were no problems on the ward during this drug free period.

After the initial two weeks – 10mg of Abilify was given and the Psychiatrist was not there on duty when I found out about this.    I had advised Elizabeth to take something as I heard injections can be forced upon people whilst under section if they refused the drugs being offered.  And so Elizabeth took my advice and complied without any problems.  I thought this would be the quickest way to ensure her early release and a week ago at the last ward round I was full of hope as I was told that there was no reason why she should not be allowed out for the family holiday which is only next month.

The problem is that there have been two changes in the drugs only recently, just prior to  Ward Round and of course someone is bound to feel the effects of this.   I was therefore most disappointed today to learn that yesterday that drugs have been increased to double the amount of Abilify (20mg).  I wanted to speak to the Consultant Psychiatrist to see if he had granted any leave yet but it did not appear so –  when I asked about her progress, having visited throughout the Easter weekend on the ward when she was fine, witnessed by friends and the rest of the family,  he said that she was not too good right now and I was not surprised when I heard that the drugs had been doubled to 20mg.    I wanted to hear whether my daughter would be allowed to leave hospital shortly and come away with us on a family holiday we had booked on farms in both Devon and Cornwall as I needed to pay the final balance but no definite answer was given. I now do not know what to do about this holiday that we were all so looking forward to.  What is the point in paying the rest if she is not allowed to go – this will spoil things for everyone in the family and getting away to a place where there is fresh air, good food, hopefully sunshine would do her the world of good.

I am invited to the next ward round which on Wednesday  6th April and according to the consultant psychiatrist will then be told the full facts.  I have already been asked to agree to a CTO (Community Treatment Order) – this is just another name for forced drugging to ensure compliance in the community and costs extra money on top – I wonder how much extra this costs.    I said that it would not be necessary or words to this effect at she was happy to take the Abilify and I see this as a much better alternative to the Clozapine (made from talc and aspartame) previously prescribed that resulted in her having this terrible life threatening condition (loss of control of her tongue) which got stuck at the back of her throat- ie NMS – which is why I felt I had no choice but to take her off the drug slowly and gradually so she did not suffer any pain or withdrawal symptoms throughout titration and was going out up to the last minute – taken out by my carers.  It was four days after stopping the drug completely that she developed a nasty cough/virus and this was when  I immediately sought private professional help outside of my local area (Enfield) and turned to Kent where I was prepared to pay a lot for a luxury rehab facility.

Cygnet Hospital must be costing my local area (Enfield Mental Health) a fortune – I reckon it must be costing circa £10000 per week and yet I am more than happy and quite prepared to pay out of my own pocket so that my daughter can experience a more therapeutic environment as she wishes to make friends of her own age.  I have seen some very good places and healthy alternatives to a ward.

Previous care homes have been a disaster.  In one local care home that must have had say c.12 occupants she was dreadfully abused whilst on maximum levels of drugs Quetiapine 800mg.  How can you function on this!   Every time it was time to go back to this scheme she reacted and certainly something extremely serious happened there.  I turned up one evening to find the Sapphire Squad and the Drugs Squad there speaking to my daughter who apparently had gone missing.   This is written in detail in the files.  With a member of staff sleeping in throughout the night there was no security and whilst the police were there in my presence someone kicked the door open in the hallway as the latch had broken.  So absolutely anyone could get into the building and Elizabeth’s flat was on the ground floor which made her a prime target for people visiting other residents which I wont go into here.

The other care home based in Northampton was where she was sent from Cambian Healthcare in Wales.   At least a two hour journey from home  and she was there for  a few months and first of all she liked it but soon it became difficult to get through on the phone and their explanation was that there was a poor signal in her room.  They then tried to get her to choose between Mum and Dad for next of kin and a solicitor I appointed did some enquiries which led back to local social services who were trying to arrange a CTO.  They did this by depriving the drug Clozapine when my daughter told me she did not wish to return back to care.  It is really shocking what lengths they went to and this prompted me to write my account of what happened called “Get Her Back We Are Paying For That”    Yes the taxpayer is paying for this and the treatment of my daughter was appalling.  I had to appoint solicitors in a case that was all about “Deprival of Medication – Community Care”.   We then were subject to constant visits and infiltration of social services staff with the Crisis Team who were visiting at the time to ensure re-titration of the drug Clozapine and this was done to report any negative things back to social services for court purposes.

It is not the case that I deprived the drug Clozapine -this was done due to serious concerns for her physical health and the titration was done extremely slowly and carefully thus avoiding withdrawal pains with plenty emphasis put on healthy diet and nutrition, whereas when the team deprived the drugs, she was left to withdraw without anything at all.  Wherever I turned the answer was always the same -take her back to the care home but now I can read to the full extent of everything in that the care home refused to release the drugs so even if went to collect the drugs as I had offered, this would have been refused to me.

It grieves me to see my daughter on another ward however nice staff might be as so much effort went in to cooking healthily and using pure ingredients and other efforts by my carers since coming home.   Elizabeth stopped smoking since coming home.   I made a real effort to buy only the best organic food and drinks with no additives.    She was talking well and able to reflect clearly on her time on previous wards and shocking memories and was just starting to open up to some of my friends who have suffered themselves from similar experiences ie. peer support and together Elizabeth and I attended conferences, meetings with former patients, open dialogue workshops where we took part with professionals. When she came home after nearly three years away I bought nice chairs to lie on in the garden and I had to buy her all new clothes as many of the clothes were too small as she had piled on the weight with the Clozapine and could hardly walk.  Elizabeth had to cling on to our arms like an elderly person.  She complained of dizziness, blurred vision, heart/chest pains and she had developed tachycardia on Clozapine and been given for some reason Clozapine chemotherapy and metformin which is contra indicated.  She had developed Agoraphobia from being on a locked ward and not allowed to go out much.   I have been trying to find out the real reason why she was given Metformin but the Bethlem have not been forthcoming with this information.  I thought she had diabetes so I booked extensive private tests.  I even went a step further as it had been recommended that I have the P450 liver enzyme tests done.  I never did think my daughter was mentally ill but rather a victim – a victim of the most terrible form of abuse that had occurred in the first instance and due to vulnerability under the care system as documented in the files in-depth.  No-one will take any responsibility or provide the trauma therapy that is really needed as drugs certainly are not the answer.  Knowing that in my local area Enfield I would get no support at all especially having read all their nasty comments and conversations I then tried to get the care transferred to another area as I have found that we got on with professionals who attended the INTAR and ISPS Conferences but these were from areas such as Liverpool, Nottingham who were keen to see change but it would seem like this is a post code lottery – some areas are prepared to look to the future and wish to see a better system whereas others are content to just carry on as normal.

 

I hope by writing this blog everyone can see the full extent of what is wrong with the current system.  There is supposed to be a shortage of money but it does not appear my local area Enfield are at all short of money judging by what they are paying out right now.

Everyone at home is missing Elizabeth but I respect her wish to “find herself” –  however I do not think this could be achieved either at home or on the ward where she currently is.  Something different needs to be tried other than secure units and care homes.

I have shown Elizabeth pictures of some wonderful schemes that are a bit different from the average care home where good friendships can be formed in a therapeutic environment.   The cost is a fraction of what is currently being paid.  Elizabeth looked at these pictures and showed an interest.   When a placement is being organised the team give a choice of three different placements and I myself have found three different placements of a therapeutic environment completely different to what has been tried and failed in the past.  Last time this was done at Cambian –  there were two therapeutic communities but she only saw two placements and the cheapest option was a care home but Elizabeth was not amongst many people of her own age there and became isolated and did not go out much.  Being stuck on a hospital ward long term did her no good and she was dependant and reliant on staff within the care home to take her out.  When we took her to Woburn Abbey she struggled with issues such as panic attacks but since coming home some of my dedicated carers have taken her out in crowds and to places where she could socialise – places like china life tea and saunas, hairdressers, parties, exhibitions, shopping for healthy food, out with other people for drives, fishing, outings, cinemas and shows in London.   We have tried to do so much in the absence of any care of help whatsoever by our local area Enfield.   I have a care plan which I have just sent to my MP Joan Ryan but there is nothing on offer and it wrongly states that we are happy.

From May 4th there is hope in the form of Open Dialogue and I have already applied for  transfer of care to another area where they have  Open Dialogue. I can’t wait for this to commence.    At one recent conference we took part in Open Dialogue with  professionals from other areas and Elizabeth was the one who started off the conversation and spoke voluntarily on how it felt to be taken to court. Professionals were in tears when they heard her speak.  I will never forget that phone call I had whilst at work to say that the girls were hiding in a cupboard under the stairs as social services were yet again knocking yet again at our door and they begged my lodger at the time to say they were out.   As Elizabeth said in her own words “its not fair Mum – they are asking me to choose between you and my Dad” .   This shows the system up for what it is in my opinion and how much there is need for complete change and a more humane system.

I have lots of friends who have sons and daughters stuck in institutions for many years and I think it is so important to bring this sort of thing out in the open as it affects everyone, which is what I am doing.  The spending of huge sums of money affects everyone at a time when there are huge cutbacks and I am willing to pay myself  I am not running down the hospital but just observing everything that is going on in respect of my daughter’s time there as I would not wish for her to be trapped on a locked ward that is meant for assessment purposes where she cannot even have her own possessions in her room for too long a period of time and she will always has a home with us but, at the same time, I am happy to let her go and for her to get the trauma therapy she needs in order to become well and it is not drugs that are the answer as even on the highest levels of drugs, she could still remember what happened and this is all too easily dismissed by doctors.   In this case the Consultant Psychiatrist is a man but Elizabeth told me she found it difficult to speak to men and therefore is holding things back.  She even admitted this fact. In order to get well she needs to go somewhere where she is not alone in her experiences.   For instance when she stopped taking the Clozapine I heard over and over again “you don’t know how I feel”  – intensive trauma therapy is what is needed in a pleasant safe, humane therapeutic environment where even if this is a fair distance from home, contact with the family is encouraged.

I will keep you all informed as to how things progress and today I contacted my local MP just to inform her of our current circumstances and following on from our joint visit to her not long ago.

 

 

 

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My daughter Elizabeth is at Cygnet Hospital Stevenage under assessment and has been there several weeks.  I have not challenged this as I felt that Elizabeth needed time to adjust and the environment although not therapeutic long term seems to be peaceful whenever I have visited and staff helpful.   There is no pressure on Elizabeth to cope with since coming off the Clozapine.  Whilst Elizabeth tells me this drug has been offered to her since her arrival she is adamant she did not wish to take it and apparently she has told a friend of mine that she is grateful that I took her off it.   I had no problems in doing this until four days after stopping the final piece of the drug and she had developed a very nasty cough so I then contacted a luxury rehab centre.  The waiting around to be assessed affected Elizabeth and she was rude to an ambulance driver who then called the police and things went from bad to worse but all the time in the ambulance whilst waiting to be transported to a hospital in Margate I was determined to find somewhere else for Elizabeth so she could get nursing care and peer support as she kept saying “you don’t know how I feel”.   How can any of us know how it feels to come off these chemicals and I could not help so I went out of my way making phone call after phone call until I found somewhere else.   I then told the police it would not be necessary for Elizabeth to go to another hospital as Margate could not help and we were destined for Maidstone by this time.  They refused unfortunately to lift the section.  Elizabeth just threw a drink in frustration at being kept waiting for ages which is understandable.  Just to reflect I had little choice – when someone complains of not being able to control their tongue, the tongue going to the back of their throat  and other serious symptoms and the fact that there was no one I could turn to in my local area.  As I have said everything went smoothly until four days afterwards and she developed this awful cough.

Anyway I am pleased to tell you all Elizabeth does not have a nasty cough any more.  She looks slim and I was pleased with her appearance today.  She is happy to stay on this assessment but this is not the place for Elizabeth long term.

I have shown her some good alternatives where it is not a care home –  Elizabeth has been either put on locked wards which is entirely unnecessary and the last one at Cambian was more than one year leading to disablement.   This place at Cygnet has a gym, they have a music room and an exercise yard and garden downstairs.   There is more one to one care and I cannot fault the staff.    They have not treated me like I have been treated by local services and other previous places where Elizabeth has been sent.   I even liked the Consultant Psychiatrist and that is saying something.  He seemed to listen and respect the fact that Elizabeth did not want to be on huge quantities of drugs and he noted her behaviour was exemplary.

It is a fair drive from where I live to Stevenage and I cannot get along there during the week.   I have been to visit most days and brought with me some friends too.   The rest of the family visited yesterday so I decided to do some decorating at home and tidy up the house.  I have stripped all the wallpaper off Elizabeth’s walls and I also want to do the hallway too.  I feel that this will be nice for her assuming she will be allowed to come home again.  I am not disputing the Abilify which I see as a better drug than the Clozapine.

I have listened to Elizabeth when she said she want to “find herself”.  I agree but I hope that I can get the rest of the family together for a meeting to discuss this important thing.  I have shown Elizabeth some of the wonderful facilities but none of them are near to home.  If Elizabeth wishes to make friends and be independent I realise she needs to move and I wish to support this but at the same time I would not like her to move to a care home like the last one where according to the files she was expected to manage on just £30 a week and when she did not manage no food at the weekend.  How can anyone get well like this.  Now this is not the place I wish to see Elizabeth go to.  What I could not provide for Elizabeth was the help psychologically and only someone like a peer supporter who has been through trauma could really help her and understand.    Elizabeth was feeling well during the titration and was on hardly any of the chemical Clozapine for quite some time.  She was going out and about and not lying in bed like I have read some patients describe on social media.  Elizabeth was fit and well apart from showing signs of tardive dyskinesia and she mentioned once about loss of control of her tongue which I could not ignore but when I stopped the drug completely she developed a nasty cough and was not eating properly.    Anyway I asked the hospital to do a thorough assessment of the condition that I recognised NMS (neurological malignant syndrome).

Easter has been quite sad being without Elizabeth as like Christmas I would have cooked dinner for the family and we could have all been together but the weather has been so awful and I am thankful as I would have hated Elizabeth to miss out on the sunshine and good weather where I could have taken her to the coast.

I have written today to the Consultant Psychiatrist as I have a holiday booked and I have paid money for this but will Elizabeth be allowed to go to this –  I do hope so.

Not having Elizabeth has given me the chance to look into matters thoroughly and I am so pleased to hear that Open Dialogue will be set up in May through primary care referrals.  I have applied already for this as I am totally in favour of open dialogue.  I even thought of moving to Finland myself to find the correct care ie Open Dialogue.  I think that a friendly “community” type scheme would be best for Elizabeth as in previous care homes some have been older than her – often she has been the youngest or there have been mainly men rather than women.  I would like to see a mixed environment of young people that Elizabeth can make friends with.

I have also looked into a summer recovery camp but Elizabeth needs to agree to this and right now in hospital this is not the time to ask her but first of all is this family holiday if she is allowed to go.   I have booked farm accommodation in a peaceful therapeutic environment near to the sea.  I wish to visit a friend of mine who lives in St Ives so the first part of the holiday will be there then in Devon where I have booked accommodation on an organic farm.

First of all Elizabeth might like to come home and relax and consider all the options for respite that I  have looked into and I have made enquiries as to cost too.  Hospital must be the most expensive thing of all.

Whilst there are good facilities at this hospital what I do not like is the fact that Elizabeth cannot have her things in her room and things are kept on a tray in the kitchen.

You are thoroughly searched before going in to this hospital and you have to wear alarms and I just feel that this is only suitable for a short stay because of these types of restrictions when for the past two years Elizabeth has been fine at home – no problems.  You are bound to  have some reaction when you come off a chemical such as Clozapine –  I was expecting this!   As I told the consultant psychiatrist this behaviour is not mental illness but withdrawal symptoms:

Here is some information re: Clozapine and withdrawals:

Cholinergic rebound is a likely explanation for the mild to moderate withdrawal symptoms and is easily treated with an anti- cholinergic agent. Mesolimbic supersensitivity, as well as specific properties of clozapine, are dis- cussed as likely causes for rapid- onset psychosis.

Cholinergic Rebound and 5d Rapid Onset Psychosis …

schizophreniabulletin.oxfordjournals.org/content/22/4/591.full.pdf

BECAUSE CLOZAPINE CAN CAUSE SERIOUS BLOCKAGES OF THE BOWELS, AND YOU CANNOT HOLD DOWN FOOD IN THE END, AND GIVING UNDER THE TONGUE (SUBLINGUAL WITH THE SPRAYS) PREVENTS MALNUTRTION

 

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. 

RE CLOZAPINE WITHDRAWAL:

When someone goes off a psychiatric drug
they might have anxiety, mania, panic, insomnia,
depression and other painful effects. They can
become “psychotic” or have other symptoms from
the psychiatric drug withdrawal itself, not because
of a “disorder” or condition.

This may be the same,or even worse, than what

got called psychosis or mental disorder

before the drug was taken. Typically

people are then told this shows their illness has

come back, and that they therefore need the drug.
However, it may be the withdrawal effect from the drug
that is causing these symptoms.
These withdrawal symptoms do not necessarily
prove you need a psychiatric drug any more than
headaches after you stop drinking coffee prove you
need caffeine, or delirium after stopping alcohol
shows you need to drink alcohol. It just means
your brain has become dependent on the drug,
and has difficulty adjusting to a lower dosage off it.
Psychiatric drugs are not like insulin for a diabetic:
they are a tool or coping mechanism.
However, when you have been on psych drugs for
years, it can sometimes take years to reduce or go
off them, or you may have long term physical or
psychological dependency. Sometimes people on
these drugs develop ongoing withdrawal symptoms,
chemical brain injury, and damage. This may not
be permanent, or sometimes people live the rest
of their lives with these brain changes.

There are facilities for people to go in and withdraw from illicit drugs but I found out there is virtually nothing as regards prescribed drugs even when you are prepared to pay a lot of money.  Because of Elizabeth’s diet virtually no symptoms were seen of withdrawal throughout and Elizabeth is so happy that I helped her especially since I have been looking into not only the ingredients of these chemicals but also the ingredients of food and it is disgusting that on the supermarket shelves there is food that you think is healthy but contains no end of additives so I was cooking in coconut oil, using Himalayan rock salt and palm sugar.  I was paying special attention and not buying rubbish food.  No wonder Elizabeth felt well throughout everything.  Elizabeth is happier on the Abilify now.

It was very quiet – not the lively atmosphere of when I used to step in the house.  Very sad.  You can hear a pin drop and the house was in darkness whereas once the atmosphere would have been more happy and lively with the TV on and Elizabeth would be eating nutritious meals prepared by her main carer and this carer remains loyal – it is good to know that some people stick by someone no matter what.  These are what I call real friends.

I have to say that Cygnet care staff are very polite when answering the phone and not once have I encountered rudeness.  This makes a pleasant change.

I spoke to Elizabeth today and she told me that she had refused the chemicals but a leading Professor has just written the following horrific details:

“When someone is on a  s.2 assessment section it is inevitable that they will move on r to s.3 especially if a patient does not agree to take the “medication” voluntarily.  They will probably use Depixol depot injections if that happens.  Until the assessment section is completed they will attempt to put her on PRN medication such as Haloperidol or Lorazepam.  They have already done this ie the Lorazepam but why push drugs if someone is settling down? ”  THIS MAKES THINGS LONG AND DRAWN OUT WITH A SECTION 3 THAT CAN GO ON FOR YEARS AND I TOLD THE CONSULTANT PSYCHIATRIST WE HAD A HOLIDAY BOOKED IN MAY AND I HAVE PAID FOR THIS HOLIDAY AND THAT INCLUDES ELIZABETH AND MY CARERS. 
 
“As we have discussed before Clozapine is not normally associated with TD or NMS except at very high doses over a long period, the problems with the tongue could be hyper salivation or conversely dry mouth. They are noted adverse effects.  Again as we have talked about before it is not a good idea to resort to quack nostrums in place of medication, medication has serious side effects but so do vitamin treatments etc..  There is no evidence that Choline powder has any efficacious properties or that fad diets can help in mental illness, vitamin B absorption problems are associated with serious illnesses and are rare.  “
“Well I have seen signs of TDS and NMS.   I do not necessarily agree about quack nostrums.”  Well I do not agree with this comment above as I have witnessed the symptoms and so have my carers but all too often such symptoms are ignored and such symptoms means the chemicals need to be stopped. 
 
“I am very sorry that your daughter is back on an acute ward.  That is never a good thing but sadly inevitable if the police are involved.  It is not likely that she will be a prisoner for the rest of her life but it is likely that she will need medication of some sort and at some dose or other.  I really do think that you are going to have to accept that at some point.  I am no fan of psychiatric drugs as you well know but risk-benefit is the issue here.  If a moderate management dose is the key to a life outside of hospital then that must be the better option.  All drugs are risky as are all fad diets and quack remedies, the risk is sometimes worth it. ”  I DO NOT AGREE ABOUT THESE QUACK REMEDIES AS MANY ALTERNATIVE TREATMENTS WORK IN MY OPINION. 
 
Returning to the section 2 I doubt that the medical staff will allow anything other than a Mental Health Act second opinion doctor to see her.  I do not think they will agree to anyone looking for NMSWELL SOMEONE SHOULD LOOK VERY THOROUGHLY IN MY OPINION AS WE HAVE BEEN DESCRIBED SUCH SYMPTOMS BY ELIZABETH AND I DO NOT LIKE THE WAY THIS HAS BEEN DISMISSED.  This condition, where it occurs is usually very obvious with very acute symptoms.  If these occur they would have to deal with it as a matter of course, it is a dangerous condition but if the acute symptoms of NMS are not present it is unlikely she has it.”  I KNOW IT IS A DANGEROUS CONDITION AND THAT IS WHY I HAVE TAKEN THE TIME AND TROUBLE TO TELL THE CONSULTANT PSYCHIATRIST
 
Elizabeth is now drug free and has been refusing to take drugs but I must warn her about the above from the Professor.   “YOU DONT KNOW HOW IT FEELS “-  ELIZABETH WAS REFERRING TO BE FORCIBLY DRUGGED.

 

When someone is placed on a section II for instance and refuses the chemicals – ie Elizabeth is off these chemicals altogether and will recover from the withdrawal symptoms by the following:

I have seen a  Section 2 go into a section 3 and a hospital stay prolonged after all it is very profitable to keep someone in a long time.  .  I reckon it must cost thousands per night for a facility like Elizabeth is in.     Elizabeth is not eating much at the moment in any case.  I spoke to her today and I spoke to the consultant psychiatrist and told him of our holiday and he said “that is a long way off*  ie May  but it is best to tell them in advance.

I am visiting Elizabeth on Saturday with some of my carers.  It is a fair drive in Hertfordshire.

Anyway I don’t know how I got through things today.   Then I stepped foot inside an empty house.

I want to be transferred to an area with Open Dialogue as there is nothing like this in my area

 

 

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.

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