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

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.   

I bought some VIP tickets for this event to take Elizabeth to as she was very interested at one time in being a chef. and I have been before to this wonderful event.  I was unable to take her last time as she was in hospital but as Elizabeth is home now with the family I booked these tickets and she thoroughly enjoyed this event and so did I.   There was so much to see and you could sample the food being prepared and watch demonstrations from top chefs. We watched a Thai food demonstration and after you could try some of the food.  In the VIP tent Elizabeth could have a drink but of course could not have the champagne on offer but they made her a fruit cocktail instead, It was peaceful inside these areas.  Considering Elizabeth has been  in hospital for the past few years and at a care home where she was not getting out that much, she did well to travel up to London on the underground and mix with large crowds.  To begin with I noticed before we had left home she seemed to be panicking.   I did not offer Lorazepam as I heard this is a highly addictive drug.  Elizabeth is on already too high a dosage of chemicals as it is but at the care home she was on an enormous amount.  Elizabeth favourite was the Thai food and we entered a competition for a holiday in Thailand –  I hope we win it – now is the time for Elizabeth to build up her confidence as I am surprised at how quickly this is happening since her return home.  I as a mother am encouraging Elizabeth to go out and at the weekends I do my best to ensure that no matter how busy I may be I find the time to take her out somewhere.  After this wonderful time at Taste of London I decided to take Elizabeth to meet some of my wonderful friends from SOAP in Camden.    We could not stay long as I knew the Home Treatment Team would be coming but normally they would come much later – sometimes as late at 9.00 pm but this time of all times they turn up early and we were out.  Luckily Elizabeth’s sister was at home and to remind the home treatment team to leave the drugs for the next day.  I am happier with this arrangement as it is less restricting and these drugs are given  to Elizabeth no matter what my personal feelings are and any unjust criticism in the past by the team .There is no excuse to turn around and say I am the one depriving the drugs.  I have already documented all of this recently however what is worrying is that Elizabeth has a new diagnosis (PTSD)which is being completely overlooked by the team despite research and I would like to see proof when I have been looking into research by Professor Healy and Professor 0rner and thoroughly agree with the report the team have failed to discuss with Elizabeth and the new diagnosis of PTSD. Now I wish to know why this diagnosis backed by research is being completely overlooked –  the cure is intensive trauma therapy and it would seem that Elizabeth has a very good memory and today I was most surprised as we walked in Regents Park at the level of observation as I had not noticed this –  Elizabeth noticed a private care expert from Harley Street driving a car –  I was absolutely amazed.  I have had to turn to Harley Street for care when the drugs were deprived locally.

Anyway Elizabeth was very happy to meet some of my new friends who I would call “SURVIVORS”  and I am proud as a mother to attend meetings from time to time.  Elizabeth despite suffering initial fears (Agoraphobia)  came out with my encouragement into huge crowds in Regents Park  –  I had no idea there were massive crowds nearby demonstrating about cuts nearby as I would have liked to have contributed in a speech on how huge savings could be made.   Well I as a mother am waiting for a room in Parliament to discuss how such savings could be made and it would be great if Mr Clegg for instance did his “question and answer” session not just to school children but to the mothers who have sons and daughters locked away unnecessarily forever in a system of care homes and private hospitals.  I am sure the mothers would have many questions and I have some good ideas too on how money could be saved to the NHS.  Why push so many drugs at someone like Elizabeth who is “treatment resistant” and it is not recommended in NICE GUIDELINES for the drug Clozapine with a diagnosis of PTSD.  It does not make any sense to me when drugs are deprived to someone who may have a physical problem because they are too expensive.   100mg is the therapeutic dose and I have had some excellent advice from more than one top professional as I have had to turn to universities for advice and I am going to Liverpool soon and Elizabeth will learn so much by accompanying myself and others to a wonderful conference very soon attended by some of the Country’s leading experts.  There is a leading expert in drug metabolism based in Liverpool and I am going to make enquiries as to whether he is back yet as he has been abroad – the necessary tests should be carried out to ensure that the correct treatment is given “I am not sure the drugs are doing me any good Mum”  –     As Elizabeth once said “you try taking them, Mum”  -If someone cannot metabolize these drugs they could be doing more harm than good and why is there not a National Metabolizing Programme in the UK as this could save money?   Despite everything that has been written about me in the files I have not stopped these drugs or encouraged her to stop taking these drugs but I would like her to be on the minimum dosage and bearing in mind the cost to the NHS for ill health as a result of long term problems then this is something that is totally overlooked by professionals.  The long term physical health of my daughter is being overlooked.    At least she has stopped smoking now she is home and I make sure there is plenty of healthy food in the house.  Elizabeth has cooked dinner on a few occasions and is doing tremendously well.  Tomorrow she is going to her grandparents for dinner –  the only help she needs is as regards getting out places as she would not go out on her own but it is only a matter of time.   All I can hope for is that Elizabeth has a normal life and she is not totally incapable but needs help in getting out places as her long stay in  hospital has resulted in disability in this respect.

I attended this yesterday all day and I very much like what is on offer at this centre.  When mainstream care fails, this centre offers a welcome alternative and I was about the only non-professional there and the only mother. 

“The aim of the workshop is to equip those working with psychotic symptoms with a deeper understanding of its traumatic roots and its relational contexts.  Empowering intent evaporates psychosis”  – how very true! 

There were films based on interviews of patients and discussions where everyone could join in.

One consultant psychiatrist (Dr Bob Johnson) did an introductory talk on trauma, psychotic symptoms and attachment which I found very interesting especially as Elizabeth’s new diagnosis is PTSD.  It is a great pity so many consultant psychiatrists mainly think of drugging as the “cure” –  well this is no cure at all and they should be concerned about the long term health implications and should listen to the patients.    Dr Johnson’s approach of cutting the strings of past trauma so they float off into the past worked for some of these patients I was impressed with the film presentation in this respect.   I understand he has a book called Emotional Health which describes his approach and I shall be adding this to my collection.

Also speaking was Kate Brown, UKCP Psychoanalytic Psychotherapist.

Much was covered in this all day course going to back to history and possible future developments and definition of psychosis and I thoroughly agree that psychosis is treatable and patients can recover from this.

The course covered Attachment theory, categorisation and research.

Also Life events which could contribute to psychosis and better understanding by way of attachment theory.

Inclusion of social and cultural

In conclusion Hope, Acceptance and Courage.

I found this course to be very interesting and when all else is failing perhaps this should be the way forward  – I would certainly say that Dr Johnson is one of the best psychiatrists alongside Dr Moncrieff who I have been fortunate to meet.

I have another course to look forward to coming up soon in Liverpool called the INTAR Conference.

Someone has just told me that there are trials going on with Open Dialogue right now and I am going to look this up as I like the approach and feel this could work here.  If there is 95% success rate in Tornio, Finland then it should be adopted here in my opinion.

Right now Elizabeth is out with her sister and I hope she will be back in time for the Home Treatment Team.    They did not turn up until really late last night and there seems to be different people coming lately.

As regards progress –  Elizabeth is becoming more and more confident in the home.  She surprises me with her memory and can cook and prepare meals.  She can certainly order a takeaway and I have had to hide these leaflets that come through the door as it is very important that she has healthy food so we went shopping today and bought food for during the week.

Elizabeth seems very happy right now and it is getting out she needs help with.  Getting to and from an appointment would be a problem for her.  She says she feels afraid of open spaces – she was not even allowed to the corner shop in the private hospital and so of course someone can feel more anxious and suffer panic attacks and Elizabeth has to hold on to my arm when walking.    I am sure that this as well as her confidence will return slowly and gradually to the point that she is going out on her own places.  Being in hospital for so long just makes someone more dependant and disabled but it is not too late for Elizabeth and it is encouraging so many care.

ly

Card from Elizabeth

I found this card Elizabeth must have made during the night on the floor of her room whilst hoovering this afternoon.

“To Mum and Family friends,