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Monthly Archives: June 2014

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. 

 

 

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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.

 

 

 

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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,

Thank you for all the support you have given to me in this bad time I’ve seen here at home – wish me luck and from God who created all of us to live on this earth and heaven above.

Love you lots

Elizabeth .

to be here at home.”

I have not altered the wording in any way or prompted Elizabeth to write this but she is very grateful for friends taking her out and helping right now in terms of support with regard to her being at home in accordance with her wishes.

I would also like to extend my thanks to those concerned who have gone out of their way to help me right now.

It is quiet in the house right now only I am at home.  Elizabeth is out with her sister having been out all day long.  Elizabeth has been taken out with a close family friend to do fishing which is ideal for her as there are areas close by where it is peaceful and rivers and lakes to fish in and she now has a License.  It was a beautiful day today and Elizabeth looks well having been in the sunshine today and as she is getting out more and more since being at home.  This is all thanks to my wonderful friends who have gone out of their way to help me.

So now the Home Treatment Team only come once a day which is a lot better – they leave the drugs in the morning the night before which the family give her and then they just call in the evening.  Tomorrow I have asked them to call a bit later.  I am really looking forward to going to the Bowlby Centre to do a course there all day long.  I did enquire if I could bring Elizabeth but it was too short notice and I am not sure she could take it in anyway so she will be taken care of tomorrow whilst I go to this course and increase my knowledge.  I will write all about this course tomorrow and I am looking forward to seeing a psychiatrist that I think deserves the highest award – it is a pity Elizabeth will not be there to see him in person.   I have other courses booked in addition to this –  one is in Liverpool and Elizabeth will enjoy going to Liverpool with me for this (INTAR Conference) and also there is much to see in this area and I am going with a few friends to this event very soon.

On Sunday I will have a peaceful day in addition as Elizabeth will be with her father and rest of the family.   If they are not going too early I would like to go to the Zumba class again like last week.  After a while Elizabeth joined in and enjoyed herself –  it did take a bit of persuasion though but all this is confidence building as when you have been in hospital for so long you are bound to lose confidence.    As I am not around during the day Elizabeth has the benefit of being in the company of wonderful friends who have known her a long time and has met some of my new friends who I would call “survivors”  –  I think they offer very good advice as these people have moved on and have coping ability having gone through the most terrible experiences.

I will write about the wonderful course I am about to attend tomorrow over the weekend.

  

Yesterday I told the Home Treatment Team we would not be at home early in the morning.  I would not be able to take Elizabeth to the new gym to try out the zumba class if she had just had the drugs given.  The Home Treatment Team turned up quite late last night in any case – in fact I telephoned as I wondered where they were and we were waiting in and it was gone 8pm.  They didn’t get the message this morning as apparently they called whilst we were out.  Anyway at first Elizabeth was a bit unsure and did not want to join in but the class was excellent and I hope this could be something we can do together at the weekends.  In order that she is encouraged I went out and bought some very nice clothes for the gym for her next visit.  Eventually the Home Treatment Team turned up at gone 1pm  and probably wont be coming until late today.  It is extremely restricting.  It means you have to wait in morning and evening and there is no saying when they will turn up but tomorrow things are going to change.  I cannot get time off to take her to a meeting to discuss the drugs but she has given consent to very close friends to go in my absence.  

 

Right now Elizabeth has gone out for a walk with a very close friend and another friend has offered to take her to the wonderful Dragon Café.  There is so much going on there and I have been along once but it is a bit awkward for me in terms of travel from where I am during the week  This and the Stuart Low Trust offer many interesting things to people who have MH problems and I have been along to Stuart Low Trust to listen to Dr Moncrieff speak once.

It has been a really good day and a positive one as Elizabeth really does seem to want to move forward with her life.  It has been lovely weather too –  every day I have seen improvement and she is doing things without being told and using her initiative.

It is good for me as well to go back to doing the classes I used to do at the end of each day and I need to get fit as I have said I would take part in a run soon but when I heard it was miles I felt like backing out immediately but I will at least try –  The Swimathon for Marie Curie was a year ago now and I gradually built up the fitness in my previous gym – I am not one to back out of a challenge and I hope that the consultant psychiatrist will reduce the drugs a bit so that Elizabeth can take part in more active sports as these drugs are highly sedatory.