Today we have had a lovely day out in Margate.

Elizabeth liked Margate very much in particular the sandy beach – there were quite a few people but not too overcrowded.

We had lunch out and walked along the front after paddling in the freezing cold water. There was an abundance of lifeguards on the beach – however Elizabeth did not want to go further into the water.

It is good to be able to take Elizabeth out with us and not think of her stuck in a hospital or care home miles away. She has missed out on so much but now I am very happy that we can share out days out and hopefully holidays in future.

Elizabeth spent 2 months in Finland working some years ago and still talks about what a wonderful place and I myself have been hearing about the brilliant care on offer. I would like to visit Tornio in Finland myself – this is place where they have got it right unlike in the UK where wards are overflowing and the system that allows enforced drugging and restraint is abusive in my opinion.

Open dialogue is the way forward and because quite often carers are excluded by teams it is no wonder why things do not work.

Anyway since coming home Elizabeth is slowly but gradually regaining her confidence. Today I handed her a pile of ironing to do and she got on with it after all I cannot do everything for her. The only problem I have is trying to get her to walk on her own outside the house and she has a fear of falling – even on the beach Elizabeth was clinging to me but we had to go shopping afterwards and I asked for her to bring some of the shopping in and it was only a short walk from the car to the front door but Elizabeth managed although in the first instance wanted me to come out which I refused because this is step forward that Elizabeth managed to walk to the car herself and I hope eventually will be able to walk halfway up the road without clinging to me. I am going to get someone to take Elizabeth to the local gym this week and see if there are any personal trainers who can come over to the house to collect her once a week. The gym, exercise plus nutrition and plenty of fresh air is the answer. Already Elizabeth is looking so much better.

I have just finished housework chores and hung washing out in the garden. Fluffy the cat is underneath one of the new garden chairs trying to keep cool but Elizabeth is in bed. After taking the highly sedatory drug Clozapine she has to lie down and is in no fit state to do anything much. I now need to go out shopping as I want to do a BBQ and I am waiting for her to come with me. Thank goodness I have my car back from the garage but at a cost – a BMW should be reliable and nothing should go wrong with this make in my opinion. It has been most inconvenient not having my car and last weekend I had to go out shopping alone and get a cab as Elizabeth refused to come. Elizabeth is covered with quilt but she says she is not hot. I do not know how she can stand to have this quilt on her on such a hot sunny day but Elizabeth has complained of feeling cold and has sat in the garden with a thick jumper on before.

My younger daughter is out working – a lot of her work is at weekends. She at home during the week rather than weekends which means I see little of her.

This morning I booked tickets for what I thought was an event taking place this weekend but when I looked at it again Big Feastival is end of August however I really want to go to this. I have now booked tickets but they have run out of the VIP tickets and the only good thing re this was that at Taste of London they had nice peaceful marquees to retreat to. I really wish that Elizabeth could meet Jamie Oliver and I have asked if there are any special tickets I could buy for this and the reason I would like her to meet him is that once she had applied to his organisation for work – it was once this line of career she so wanted to go into but Elizabeth was not well enough and that is when I found out about the anti-depressant drug. I did not understand at the time that the dangerous Cipralex could have been behind the change of character we so rapidly saw and change of appearance from someone immaculate to someone unrecognisable (she suffered from mood swings ranging from suicidal thoughts to aggression and skin problems on this chemical) but there were other factors too which I cannot mention. As a mother I did not think that this drug could be behind everything we witnessed and trusted these doctors and I never thought that this drug could lead to initial hospitalization and a string of different labels and over 14 mind altering drugs – a revolving door syndrome of hospitalization and desperation. I thought counselling would be on offer but was shocked at hearing that Elizabeth would “have to take the drugs for the rest of her life” I am in touch with former patients who have also suffered so much at the hands of professionals who similarly believe that drugging is for life and with total disregard for physical health. How wrong they are as I have met patients who are now not drug dependant but they have struggled without proper backing and support in many cases.

Anyway I spoke to yet another consultant psychiatrist (now three of them) in the course of the week so there is a Dr A, a Doctor M and now a Doctor W involved in the care and Doctor W telephoned to inform me that Elizabeth was meant to have a blood test and I did not know because every week I have to arrange someone to be there with Elizabeth whilst I work. I did not know about this test so I frantically had to contact the two people involved in the care for that day to ask them if they could possibly take her to the hospital so that this test could be done. I had to go out of the open plan office where I work and make a phone call on my mobile to arrange this. Anyway that is all out of the way now but whilst speaking to the consultant psychiatrist I told her about the symptoms I had noticed whilst out walking with Elizabeth. I could not believe it when the consultant psychiatrist said there was another drug for this. I immediately turned around and said she was already on too high a dosage and I have had to turn to top professionals to get advice – up to date advice only to discover that 100mg is the therapeutic dose not 350mg – Also there was no way any other drugs should be given as they may do more harm than good bearing in mind she is treatment resistant. I could also not believe it when the consultant psychiatrist said that as she was doing well at home this was a sign the drug was working. OH NO IT IS NOT. The fact is Elizabeth is very happy to be at home having experienced the most shocking wards and to think I thought there would be better care elsewhere as at the time there were other factors why she needed to get away which I cannot discuss here. I have since discovered two areas in the UK where the care could be good (thanks to universities providing top0 class training of professionals) but if I was to leave the UK and go abroad the best area of all is of course Tornio in Finland where they have open dialogue – I hope to visit Finland in the future with Elizabeth to see for myself what wonderful care is on offer.

Some of the mothers that I know are going to the Mental Health Capacity Consultations coming up and I wish I could come but it will be impossible for me to get time off from work then however I have written exactly what I think on the website of the Dept of Health. Also I intend to personally write to HRH Prince Charles to congratulate him on his views on homeopathic medicine and I quite agree with him and Dr Walsh – I hope Mr Burstow has read the book I gave him but he has not agreed to give a room in Parliament for all the mothers to come and see him and discuss the way forward. Unfortunately I cannot see any improvements as there is NO CHOICE and system that endorses enforced drugging for MH patients and when I recently turned up at the foyer of the MH Unit locally to try and obtain the drugs being denied to Elizabeth I was shocked to see many of the same faces still on the wards and many came up and spoke to Elizabeth. All the more reason for there to be choice and there is no way on earth I would wish to see Elizabeth back on any local wards.

Re Feastival:

It would be my dream to meet Jamie Oliver himself at Alex’s Farm to discuss what I wish could be his new project and that is to tackle healthy eating under MH care alongside Dr William Walsh and to look at the effects of the mind altering drugs in terms of nutrition. I would like to tell him about Chy Sawel and some of the wonderful advice and knowledge I have recently gained. There could be many patients who will get better within a specialist centre which could lead to others being set up so that those who constantly end up on the acute wards can be properly examined not only to see if they have underlying physical health problems but also to look very closely at diet and nutrition as many of these patients are dumped into the community and left to fend for themselves without proper help and backing so there needs to be better facilities available and nutritional care being made available for those who are too ill to cook and prepare food themselves yet are going downhill because of neglect and these drugs can cause someone to have no energy, be incapable to think straight etc. It is vital that such patients are given a service providing proper nutritional care and possibly meals provided to them. When Elizabeth was in the scheme in the community many times there was nothing in the fridge and she had ordered junk food. Now at home I throw away all the leaflets that come through the door and think of nutrition all the time and do not buy unhealthy food. Elizabeth really enjoyed going to Taste of London but this will be wonderful as there is so entertainment as well and it will inspiring for her to attend.

As for this weekend I am waiting for Elizabeth to wake up so we can go out as I have things to do this morning however she is more than capable of managing on her own as I have seen – the biggest help needed is someone to take her out and I was going to take her to the local gym which is within walking distance and to have her hair done which is now practically back to its natural colour and maybe I can pay for a personal trainer to come round and collect Elizabeth during the week and take her to the local gym as well as young people who can go out with her places. She does not want to go out every single day but I would like there to be something in place and it has been two months and my own friends have been wonderful in taking her out places but as there is nothing provided I will have to provide it myself and discuss with Elizabeth what she would like.

In relation to the extra drugs the consultant psychiatrist wishes to give for the onset of tardive dyskinesia well before any more drugs are dished out a specialist such as a neurologist should be consulted and also I am now able to keep a watch on what is going on after the shocking discover that Elizabeth was on CONTRA INDICATED drugs. Contra indicated drugs were METFORMINE AND CLOZPINE and I have looked into matters further to see that only an Endocrinologist can prescribe this drug off label. It was immediately taken off when I complained. This is why it is a good thing Elizabeth is home now especially since there are three consultant psychiatrists involved.

Finally I have still not heard from Cambian – I am losing my patience now and will have to personally go down to the Head Office to see the Chief Executive. I am going to write for an appointment as I never heard the outcome of my initial complaint. My complaint is that the oils and supplements are still missing and now that Elizabeth’s possessions have come back from the care home I have looked for these items. They are nowhere to be seen. Now it is between Cambian and the care
home and the cost should be refunded to Elizabeth whoever has lost them and I intend to find out.

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

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