Since coming home from the care home it is noticeable that Elizabeth suffers from Agoraphobia – there are good days and bad. This weekend has been bad as once again my BMW car is back in the garage despite it being taken to the garage a week prior and no one could find anything wrong with it. The AA were called out but being without the car has given me some problems this weekend. On Saturday I wanted to go out and meet some friends and Elizabeth did not want to go out. Immediately just beforehand she was on the point of making herself ill. I managed to get her out by ordering a cab and Elizabeth admitted to me afterwards what a good time she had and that she was grateful I did persuade her to go out as she enjoyed herself. Today again without the car is a big problem. I had shopping to do and Elizabeth once again was making herself ill before hand and refused to come out with me. Sometimes even a walk up the road is too much and the team are constantly asking “have you been out today – was you out yesterday – have you spoken with anyone today” They also ask if Elizabeth is suffering from any side effects and she never likes to complain. Elizabeth admits that just before taking the drugs she cannot express her words properly. She has to lie down- she is on 350 mg of Clozapine but before this whilst at the care home she was being over drugged with other things on top – I do not encourage Lorazepam as this is a highly addictive drug but it is given out like sweets in the hospitals and a patient says they are stressed then Lorazepam is given or similar.

When Elizabeth was walking out with me last week and she wanted to go out just up the road, I noticed her arms were making strange movement and this I see a sign as the onset of tardive dyskinesia. It is only noticeable when Elizabeth is walking out for a distance and I am most concerned about this. These drugs are NOT designed for long term purposes and especially not for someone who is TREATMENT RESISTANT and she now has a diagnosis of PTSD which is backed by research. When there is doubt such as this about a diagnosis it is appalling that in the UK this is just ignored and nothing done about it. Well if there are such things as Safeguarding a patient then there should be such a thing as safeguarding in terms of their physical health and this is something that I as a mother am very interested in. There are people within a team that have no medical knowledge and yet are involved in decisions that can delay or determine treatment and there are such people with NO medical knowledge that try to encourage taking of drugs which is something that I disagree with. Only someone who is medically qualified should be involved to do with anything regarding the drugs and that person is the one who should make medical decisions and not prevent treatment going ahead or delaying it. Whilst Elizabeth can cook herself dinner, feed the cat and do basic things within the house the help she needs is not being offered to her and because nothing is being offered I as a mother am left with no alternative but to try and find such care myself and pay for it myself. I have been told to pick up Elizabeth’s possessions from the care home and I have had to arrange for someone else to do this. Elizabeth is excited today as her father has telephoned and her father wishes to see her for a week and I am very happy for her. The rest of the family can now see how well Elizabeth is doing at home.

Today she could have gone out fishing with a friend – she now has a licence but did not feel up to it. Today she could have gone shopping with me but the thing I feel will restore her confidence is young companions of her own age. I have introduced Elizabeth to my friends and people I have got to know who are “survivors” now getting on fine with their life. This kind of peer support is equally very useful for Elizabeth and I am finding that it is friends that I have everything to be grateful for as they and only they are helping me and Elizabeth right now.

Every day I have to arrange for someone to be round with Elizabeth but she is not entirely helpless. She is not a child – she has a right to be treated like an adult. She is not a risk to herself or others and not on a section or a CTO.

I hope the Department of Health take note of my recent comments as it is not right the way mental health patients are treated in the UK.

I got up at 10.00 am, took my medication and my sister drove me and her friend to Camber Sands. We arrived at about 1.00 pm and found a car park to park and my sister bought a ticket for £10.00. We straight away went to the beach. It was a nice beach, the sea was calm and it was nice and sandy. We went for a drink in the café first of all which overlooked the beach. After that we went to sit on the beach and my sister had made a picnic which included sandwiches, crisps and many nice things. My sister and her friend went to paddle in the sea whilst I sat and watched and it was funny to see as her friend pushed my sister into the water which was cold and she screamed and was drenched whilst I sat on the beach and laughed.

We stayed for some time on the beach and then we had to watch the time as the Home Treatment Team come sometimes early and we had to be back but my sister was very upset as she got a parking fine. As she was helping me out of the car the ticket must have blown out and she is appealing against it but she was quite upset at receiving this ticket when she had paid and now has to prove it but there are cameras in the car park but staff would not give their names – I hope she does not have to pay the fine of £60.

I had a great time today and it was so nice to sit on the beach and be out in the fresh air.

Sometimes before I go out I feel nervous but today I was fine. I do not always feel like this though but today I feel good.

I have today gained a sun tan. It was not overcrowded on the beach.

It has been c2 months since Elizabeth has come home from the care home and we are all amazed by her progress.

Close monitoring of Elizabeth has been undertaken as she is on the drug Clozapine was being undertaken by the Home Treatment Team twice a day. This arrangement was pretty awful as it meant Elizabeth could not go anywhere or do much at all. Being on Clozapine meant that strict monitoring had to be done and they have increased the drug to exactly the same amount as it was originally. I also feel the visits by the Home Treatment Team are not just for health purposes but a way to record and report everything that is going on back to social services. The Home Treatment Team work very closely with social services – one of their nurses said to Elizabeth “it wont be long before you are going back to ……………… (The care home) …………….is coming to get you tomorrow.” Well one thing is for sure it is not for them or for me to decide upon. My close friend and family were sad to hear these comments and to read them. When I am at home in the evenings I have heard questions as to “have you been out today” said more than once to which Elizabeth will say “no” when in fact yesterday she was out with me in the evening and we went for a short walk. Today we went out for a longer walk as I am without my car right now, hoping to get it back from the garage tomorrow. I was talking to Elizabeth the other day – whilst she has been out with various friends of mine and has even gone fishing and now has a licence, we discussed about her having young companions to go out with and I am more than happy to provide/pay for this myself. I would consider suitable someone who is studying nursing/psychology and this could likewise benefit them as well. A young person could take Elizabeth to Zumba Classes during the week or swimming or cinema whilst I am at work. A young person – not me – could be just the thing to restore the shattered confidence of my daughter who now suffers from Agoraphobia. She is alright once out but the thought of going out can affect her to begin with – this is why I think someone from a nursing background would be most suitable or certainly someone who understands and who is caring. I would like Elizabeth to have a normal life and I believe integration into society to be very important not just mixing in with others who have mental health problems.

Elizabeth is complying with the drugs, is not a risk to herself or others she is doing well at home and can manage too. She has cooked dinner, she has tried to tidy up and clean, she remembers to feed the cat and said yesterday of her happiness to be at home. I am not pushing her to do anything much but do encourage her to go out with me at the weekends and was astonished that on three occasions she has come out in Central London with me amongst crowds and was OK.

This weekend we are going to a very nice event but I am not sure if Elizabeth will wish to stay all day – I hope the weather will be nice for this event.

I am also thinking of the possibility of a personal trainer coming to the house.

It is help for her to go out that is needed as she can manage in the house OK.

The weekend has been very good.

Today I wanted to take Elizabeth to join a gym with me my car is still at the garage and so we have had to walk/rely on public transport but this has been good for Elizabeth as before going out I notice she is making excuses not to and is suffering a bit from Agoraphobia but after going out she is happier. At the care home I understand Elizabeth was taken out once a week – it would either be swimming/walking. Here at home Elizabeth is getting out in crowded conditions more often and without all that extra drugging and this is rebuilding her confidence. She has not needed any of the highly addictive Lorazepam and I have read this can increase some of the symptoms of dizziness.

Needless to say everyone is commenting on the fact she looks much better since coming home as she can get out more easily and we are not situated on a main road.

Elizabeth is not being deprived of the chemicals by me as a mother as the team would like to think however she has not needed all the other extra chemicals on top:

If this regime of drugging was to go on for much longer I am sure her physical health would have been affected. Already there seems to be a problem. On a hot sunny day Elizabeth is freezing cold – her hands are like ice. These drugs have I am sure affected her physically.

Clozapine 350mg – is a highly sedatory drug which is being plugged by a Dr MacCabe who gives a shocking presentation and audio “Start Low – Go Slow” and pushed by the Nat Psychosis Unit who offer £45 so I understand towards their experimentations.

Elizabeth has complained it gives her double vision and she suffers dizziness to the point she has to hold on to someone when walking out. That could also be confidence as well since she has not been out that much over the past years. Going out is essential for her independence and being stuck in can lead to Agoraphobia – signs of which I have seen since her return home.

Social Services care most about whether Elizabeth is taking the drug but they do not know the first thing about drugs themselves. This is why I have had to turn to experts who know the drugs inside out even better than GPs and psychiatrists themselves as these are experts who work on the drugs. If the team knew about this chemical they would not have deprived it for several days and I was told to get her back there to the care home “we are paying for that”. Actually it is the taxpayer who is paying and how much is the taxpayer paying as I would like to know this information. Well it is far cheaper for my daughter to be at home as I am asking for nothing. If the team were to provide anything, the very best thing they could provide is a bit of funding in the form of direct payments in order that Elizabeth could go out more often with people of her own age which could also benefit those studying for say nursing, psychology as they can learn from a case at first hand and see fully her family background whereas at present if they look in the files they are likely to see some very wrong things written about me for instance and you cannot erase anything written. The things written are not nice at all or true and you can only get a true picture when you spend time with a family and not even from the visits by the Home Treatment Team who report back to social services so I have seen in papers. THIS IS WHERE WE NEED OPEN DIALOGUE AND THIS IS WHERE THE SYSTEM IS FAILING. The system plays upon capacity and confidentiality but should be open and transparent especially where taxpayers money is concerned and include the family – Elizabeth was upset when told to choose between her Mum and Dad and a member of the team could not seem to understand that when I spoke to this person not long ago. This was why Elizabeth did not want to go back and also she wanted to come home after her discharge from CAmbian but a condition of her release by the Tribunal was that she was NOT allowed to come home – they constantly play on the fact I would stop the drugs or encourage her to stop taking them but this is without foundation at all as you can see the lengths I have gone to get this chemical Clozapine not being a doctor myself and having read about the dangers of stopping this – not that it is impossible but in order to do this you would need very very close medical supervision and support from doctors so to everyone who reads my blog THIS IS SOMETHING I WOULD NOT ATTEMPT MYSELF WITHOUT HELP FROM A QUALIFIED DOCTOR AND I HAVE TO SAY THOUGH THAT ELIZABETH IS VERY STRONG TO HAVE COPED WITHOUT THE DRUG FOR SEVERAL DAYS ON THEIR ACCOUNT.

Well things are working out brilliantly at home with Elizabeth and we are all getting on – friends come in during the week when I work and at weekends I try and take Elizabeth out to nice places.

Recently in Liverpool I was delighted to meet people who really wish to see change in the UK and I am delighted with my new contacts.

Everything is wrong when the law allows enforced drugging to someone who is complying with the drug and a law that allows professionals to use such powers against families instead of helping them.

Anyway I do not think I will be getting my car back tomorrow so we will have to walk everywhere again but you can walk across fields nearby which takes you to the gym and you can even walk to the town and I wish to take Elizabeth into the town today to buy her some things to go with her outfit as we are going to a very nice event next week.

I thank God for the honesty and knowledge I have gained from various Universities and this is where to go if you want the latest advice.

I now have an important letter to reply to and have been putting this off so I must now do this – the letter is regarding Elizabeth and I show her everything and I will most certainly mention the report by the consultant psychiatrist of many years experience with the new diagnosis of PTSD and recommendation of INTENSIVE TRAUMA THERAPY. The people who are ignoring this report are not doctors and even if doctors do not agree with the report they have failed to give scientific evidence of the diagnosis “paranoid schizophrenia treatment resistant” – this is just a label in my opinion when underneath it could be a physical problem that remains unaddressed. If there was proper tests before giving these harmful drugs then there would be a more accurate case in giving out these labels and treatment of life time of drugging however there is not and that is why things are not fair in the UK. In Liverpool there seems to be a lot of support for change – then there are the Professors who would also like to see change but it is mothers like myself who have sons and daughters affected who want something done urgently – there is no excuse to say these things take time – this is nonsense in my opinion – time is money and they have a duty to the taxpayer in my opinion.

I have another reason to suspect that the condition that psychiatrists refer to as treatment refractive schizophrenia is connected to endocrine dysfunction. The drug Clozapine is the drug of choice in this condition, usually arrived at by a crude process of elimination after administering the range of drugs available for the treatment of psychoses.

Dopamine has been the main suspect in schizophrenia for years but to date this has not been categorically confirmed. Nevertheless the main treatment for schizophrenia has been the drugs in the dopamine receptor antagonist class with some degree of success.

In treatment resistant forms of psychosis these drugs do not suppress the more florid symptoms which indicate two possibilities. The first is that the patient cannot metabolize these drugs due to deficiencies in cytochrome P450’s, the principal enzyme responsible for metabolizing anti-psychotic medication. It is logical that a poor or non-metabolizer will not benefit from drugs requiring P4502D6, P450IA2, P4502C or P4503A. All the current drugs in the psycho-pharmacopeia require these cytochromes for metabolism and apart from the possibility that the patient may be deficient, many other drugs interfere with the metabolism and pharmacokinetic properties.

The drug Clozapine is unusual in that it is a weak antagonist at D2 receptors. This casts some doubt on the dopamine theory as a cause of schizophrenia. Clozapine inhibits α-adrenoreceptors, muscarinic, 5-HT and histamine receptors. Risperidone is also a weak D2 antagonist and operates on 5-HT2 receptors.

The effect on 5-HT receptors is interesting in that elevation of cortisol after prolonged life stress may predispose a patient to mental illness by interfering with brain 5-HT function. This offers an alternative cause of psychotic episodes less reliant on dopamine levels. Endocrine disorders are associated with elevated cortisol. Plasma cortisol is increased in about half of patients with depression but this is not specific to any particular depressive disorder and occurs also in mania and schizophrenia.

Treatment refractive patients may not be suffering from classical dopamine related schizophrenia at all but their psychotic symptoms may be a result of an underlying endocrine dysfunction perhaps in the parathyroid or pituitary. It is hardly surprising that they would not respond to the classic psychiatric medications based on dopamine receptor antagonists.

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

Barry Turner – Senior Lecturer Lincoln University UK

 
 
 
  • also connected to systemic candida infection or

    Causes of Schizophrenia – well-known, less-known, and almost unknown

    Well-known

    Dementia paralytica
    Pellagra
    Porphyria
    Hypothyroidism
    Drug intoxications
    Homocysteinuria
    Folic acid/B12 deficiency
    Sleep deprivation
    Heavy metal toxicity

    Less Well-known

    Hypoglycemia
    Psychomotor epilepsy
    Cerebral allergy
    Wheat-gluten sensitivity
    Histapenia – copper excess
    Histadelia
    Pyroluria
    Wilson’s disease
    Chronic Candida infection
    Huntington’s chorea

    Almost Unknown

    Prostaglandins
    Dopamine excess
    Endorphins
    Serine excess
    Prolactin excess
    Dialysis therapy
    Serotonin imbalance
    Leucine, histidine imbalance
    Interferon, amantadine, anti-viral drugs
    Platelets deficient in MAO (monoamine oxidase)http://www.alternativementalhealth.com/…/causesofschizo

I have just returned home from Liverpool with Elizabeth, having attended this wonderful conference which I would highly recommend to everyone. 

Unfortunately, when Elizabeth first takes the chemical Clozapine she feels dizzy and this is always the case but I have read that this is a common side effect reported by many.  Elizabeth was not feeling her best and so I did not force her to go up to the lectures – it is a shame though that I missed out on seeing lots of people I am in touch with via social media however we did take part in a workshop that was very good – this was held in a different building and Elizabeth felt comfortable to attend.  One thing I will say is that this conference was extremely well organised and there was so much going on there – I would have liked to attend more of the workshops.  In the Chadwick Building we were spoilt for choice as there were several workshops taking place in different lecture theatres at the same time but when I saw the one entitled “Story Café”  with Lisa Rossetti I felt this would benefit Elizabeth and she is here with my right now and in her own words she describes this workshop as “amazing” and it was very interesting to listen to the personal first-hand experience of Lisa Rossetti.  I am full of praise for this and was happy that we took part in something.  The buffet lunch was amazing and there was so much food.  Elizabeth started to feel better briefly but she was still not 100% and wanted to leave early.  I would have loved to have taken part in the workshop of Laura Delano and Peter Stasny “Organised self-help and mutual support as alternatives to the traditional mental health system: lessons from history and promising directions” and there were others too.  However II am not one to push Elizabeth into going as she clearly did not feel  her best that day.    We left early and rounded off the break by going to the Cavern Club which is something I wanted to do last time I visited Liverpool.  

The only thing I did not like in Liverpool was the SatNav did not work as there were roadworks and when you are not familiar with a place it was a nightmare and there were plenty of one way streets.  However unlike London there were many people to help and I noticed how friendly this place and there was plenty to do -  Elizabeth liked the Cavern Club which is open until 2.00 am and has non stop bands playing Beatles music. 

I am going to read through all the wonderful literature I obtained and I played Elizabeth a dvd featuring Jacqui Dillon (National Chair of Hearing Voices Network in the UK and it was both interesting and inspiring to listen to this -  I pointed out to Elizabeth that some of the people speaking at this conference were “survivors”  -  I would hope one day that would include Elizabeth herself.   I have also purchased the book Demedicalising Misery of which Jacqui Dillon is co-editor and I would recommend this book.   

I understand the INTAR Conference is held every two years and I will most certainly go again and would recommend it to everyone.

One of the outstanding things that interested me was a table the work of Peter Sedgwick and his classic text PsychoPolitics (1982).  Obviously with Elizabeth’s situation I was most interested in this and unfortunately did not get a chance to speak much however I have the email address and am going to write.  This will interest all the mothers I am in touch with   Organised by Department of Social Work Care and Justice, Liverpool Hope University and supported by Social Work Action Network (SWAN).  Asylum the Magazine for Democratic Psychiatry.  UCLan Schools of Social Work and Health, Journal of Critical and Radical Social Work.      “The Organisers welcome proposals for papers/workshops from academics, service users/survivors and mental health practitioners”.    I do not see the word “Mother” written however am most happy to submit my ideas and include those of Elizabeth’s.  Thank God there is someone like Peter Sedgwick and organisations such as these and to join their mailing list or submit a paper proposal the email address is: sedgwickconf2015@hope.ac.uk.   I am going to pass this on to all the mothers who have sons and daughters on never ending sections - it is important not to forget that these people do not have a voice and many are dumped into institutions such as private hospitals and care homes for many many years and drugged to the point where they become too weak to go through a tribunal at taxpayers expense when there could be many alternatives and maybe the drugs and the care is completely wrong for these people.   It is disgusting what is going on in the UK.  Some of these patients may have had a bad reaction to the drugs as Elizabeth did and that is because nothing is tested properly so how many more could be treatment resistant (poor or non metabolisers) and this is something else that Liverpool University is looking at Drug Metabolism with Professor Pirmohammed and I am going to make it my goal to fight for this programme nationally as with  the treatment Elizabeth is having when she is diagnosed as treatment resistant only proper tests can determine just how harmful this is and besides the point when someone has PTSD this should be recognised by the ENTIRE TEAM  – it is disgraceful to keep this report a secret from Elizabeth as she has a right to know and I have made sure she knows as I read the documents to her and do not hide the facts.  I also do not treat Elizabeth as a complete invalid either.  In my opinion she is more than capable and is really trying to get back on her feet and I happen to think that is possible.  Getting back to the diagnosis of PTSD there is research to back this condition. PTSD is the correct diagnosis and there should be tests involved that look thoroughly at everything.   The Endocrinologist test I wanted was not available in the UK much to my dismay and treatment needs to be updated in line with the States in my opinion.  I sought advice from a  leading Professor in this field and was most disappointed this test was not even available in the private sector as I wanted one that was 100% accurate.   

At the INTAR Conference there was a large room with many tables that had representatives from various inspiring organisations -  the SOAP group was one who was represented alongside  gallery of digital artwork by local artist Keith Croft and poetry by Val Walsh who I am in touch with alongside Shared Pathways Recovery: the journey not the destination.

I have another course to go on later on in the year.  All of this is increasing my knowledge, together with all my new books I have purchased. 

 

 

When I got home Elizabeth was not there so I asked her sister where she was and she is out enjoying herself with close friends.  I am delighted about this as at the care home she was in bed at 6pm and sleeping in the afternoon -  at least at home she gets out places and this is very good for her confidence.   Also she is on a lot  less drugs and I was horrified when I saw the list of chemicals being given at the care home – more than ever before by a consultant psychiatrist who not once telephoned you back.  

Anyway, I cannot wait to take Elizabeth to a wonderful conference in Liverpool and see some of the sights of Liverpool if possible.  At this conference I am looking forward to meeting some of the people I have written to on social media who are professionals wishing to see change and alternatives to hospital and I am certainly in favour of this.  An acute ward and oppressive environment does not suit everyone and with all the wards overflowing there needs to be alternatives and I shall be mentioning Chy Sawel as a good alternative and also the way forward I believe is Open Dialogue which includes the family unlike my experience.

Elizabeth has done a lot of walking tonight and that is a very good thing.   The more she gets out the better in my opinion as this is the right way to regain her confidence.  This is the way forward.

It will be educational for Elizabeth to attend the forthcoming conference and she may well have some good ideas of her own about what kind of care would work in her opinion. 

Anyway I am so looking forward to the INTAR CONFERENCE and I shall be writing about this in due course.   

 

 

 

 

 

 

 

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