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Monthly Archives: September 2014

I believe that exercise and diet are extremely important.   Since coming home Elizabeth is not living off takeaways but I buy fresh food and prepare the meals at the weekend for during the week.  Occasionally thought Elizabeth will order a takeaway despite the fact I throw away all the leaflets.  More and more leaflets are delivered and I do not believe takeaways to be at all healthy.     Elizabeth has been having personal training sessions but I noticed how much she enjoyed the Zumba class that I took her to a while back and a friend took her on Tuesday evening.  Today I joined her in this gym where they have a swimming pool and classes.  I was able to join in and I have given up a fabulous gym membership in the Chelsea area –  I was getting home so late but the classes were good and they had a nice swimming pool – a private gym that had a beautiful l roof terrace.   Since Elizabeth has come home from the care home I like to be home early now and there is a class I could fit in on Tuesday and take Elizabeth at this local gym.  Anyway in addition to this I am appointing a trainer to come to the house – someone who does Zumba classes.  This should keep Elizabeth occupied during the week.

Today as usual it is difficult to get Elizabeth out of the house.  She is suffering from the condition of Agoraphobia and feels physically sick at the thought of going out and sometimes goes out of her way to try and get out of it.   I do not believe the answer is addictive chemicals and an expert said the answer could be psychotherapy.  Well this is something I may have to consider as well as the trainer coming to the house as I would like to see Elizabeth making her own way out and going out places but it is like she is still a prisoner – a prisoner of her own mind –  the drug Clozapine causes her to have double vision so she told me and she feels dizzy.  At today’s class she stood at the back of the class and there was hardly any room for her to  move as she was between gym equipment and I tried my best to get her to move forward but she flatly refused.   I think the classes I plan to arrange at home will benefit her as it is just a matter of regaining the confidence lost by being institutionalised for so very long.  It is not good to place someone too long in a hospital environment and then onto the care home hundreds of miles away from home where she could not get out on her own.  She would know her way around the local area but has not once ventured out alone in 5 months and this is because she feels dizzy.  Elizabeth has told me that she did not feel well at the care home and I am not surprised when I saw the level of chemicals they were pushing at her.

Today in addition to doing this class we went shopping –  I wanted to go to my usual meeting with all the Survivors but I had so much to do and we did not make it.

I am very pleased with Elizabeth’s progress but will try to do everything I can to regain her confidence so she can go out places on her own and tomorrow I am going to see if I can get her to walk halfway up the road by herself.  If this does not work then I may look at what is on offer at the Bowlby Centre where there are experts who could possibly help Elizabeth and I went to a brilliant course there not so long ago with Dr Bob Johnson on Psychosis.

Tomorrow I am getting Elizabeth up bright and early to do another class with me.  This exercise is good her as she has quite n appetite and is always hungry on this drug.    Today I made sure that when I got lunch out it was a very healthy lunch –  I am very happy that I can share the things I enjoy with my daughter and really look forward to the weekend.

I hope to finish the decorating  and then I can arrange for the CCTV to be up and running.  It is partially installed and I can remember a member of the Home Team seemed panic stricken about this well I will have peace of mind with this CCTV up and running like I said.

Elizabeth mentioned about Finland and I would be willing to take her to Finland where she once worked.   I would like to see the fantastic care on offer which the world should take notice of – it is no wonder why they have 95% success rate.

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Yesterday we went to one of the good things based in the local area (the local carers centre) which I do not have time to go to during the week when they have most of their activities but yesterday they thought of those who worked or who could not attend during the week and did a lunch and discussion, gave advice etc.  I had no one to stay with Elizabeth being the weekend and had to bring her along and I was asking about something there that could benefit Elizabeth but was told there was a six month waiting list prior however they are looking into things now.  Elizabeth has been back home for around 5 months now since coming home to stay from the care home and not wanting to go back.  Elizabeth has made good progress at home and there has not been one sign of abnormal behaviour because she is mixing in with my close friends who have kindly come into the house every day and to begin with it was made all the more difficult with the re-titration of the drug Clozapine whereby staff were coming in to the home twice a day and reporting their findings back to certain people.  Likewise my carers were reporting to me their findings but now we are left alone with no visits which is good.  If someone is to lead a normal life then this should be encouraged and less restrictive.   Since complaints were made to the Director of Mental Health locally the intrusive visits by the Home Treatment Team on nearly a daily basis have ceased and Elizabeth is with the community mental health team.  The drugs are running out now and not one person has been in touch from this team to speak of new arrangements to collect them.  It was easy before when she was under the Home Treatment Team as I could just go and pick them up on a weekly basis at the hospital on a Saturday morning.  I had to wait for quite some time but at least Elizabeth did not have to wait all morning like in some cases before.   Now it is left for me to telephone their office to find out where the prescription can be obtained which I will try and fit in tomorrow.

So we did not go out and do too much yesterday but we have not long got back from Leicester from the fabulous ISPS Conference where the professionals speak the truth which made a refreshing change.  I have already said that the place to go for honest advice is the universities like Liverpool, Leicester, Lincoln and Nottingham.  The only thing I wish is that all these experts/Professors would get together and do something to help my daughter and others given a life sentence of drugging with a label that is incorrect so therefore with misdiagnosis comes wrong treatment and that means the patient does not get better.   I have already told you that even without all of this advice I was suspicious and that is because I have two in the family who are on top of the world – where did these labels come from?   Well there is a book called the DSM and there are so many diagnoses in there it is laughable.    I would need to see some scientific proof before I would ever accept any label myself and when top leading experts tell me there is no bio marker for Schizophrenia I cannot just dismiss such good advice.  It is only when you research things thoroughly you get the full picture of what is really going on that is not documented in the press.

With wards overflowing through lack of beds everyone should be questioning mental health care as even if they are not affected then they should surely be concerned about the costs involved here for care that does not work simply because there are people who cannot metabolize the drugs and nothing is being done and others are given prescriptions of more than one drug and suffer from adverse reactions.  People should question what knowledge there is in the prescribing of these drugs by some psychiatrists.  People should be questioning the use of private sector care for MH patients for as long as three years especially when Elizabeth has come out of this “care” as disabled.  She is now disabled to the point she will not go out anywhere alone and is petrified of going out anywhere and it takes her often the day to relax and enjoy herself at all.  I was watching her at the conference and no sooner had we arrived she wanted to leave – the last conference in Liverpool INTAR she was not feeling well enough to attend any of the lectures.  I had already booked these conferences before I knew Elizabeth was coming home.   At the Tribunal in Wales when Elizabeth asked to come home it was simply not an option and none of them agreed to this.  So it has now been 5 months at home and I have not been the one that has denied the drugs as I have been accused.   It has been the team who have done this and still nothing is up and running smoothly and I am left to find out about obtaining the prescription.

Anyway  it is a nice day today and I do not want to be stuck in today so we are going for a drive to Hampstead where we have been invited to visit  by someone who attended the group I go to.

Close friends are back from holiday and have offered to take Elizabeth out during the week for activities and she has a personal trainer but I can only take her at weekends.   There is no support from anyone else in the local area at all.

Various people are writing books, making films, organising events, speaking out about stigma an discrimination however drawing attention to things is one thing – there’s plenty of people like this but then there are those who really know about the drugs and “treatment” with up to date knowledge and they are quietly working behind the scenes.   Then there are the survivors and former patients who bravely speak out and the parents who get in touch with me and we share the same experience of bad treatment ruled by a system that  that is cruel and abusive..   Who really cares about these patients,  if people really cared there would be a place like Earth House set up ie Chy Sawel or Soteria offering alternative care and I do not see why things should take so long especially when MH is now at crisis point and wards cannot cope – public money is being wasted whilst other services are suffering and there is no support in the community as I have documented.  Open Dialogue is the way forward.

The UK’s primary care of drugging/enforced drugging and ECT is not working for everyone.  Even if someone is treatment resistant or reports terrible side effects they are just ignored in favour of continuing with drugging regardless and drugs are often raised.  It is all about control and making money – if someone becomes disabled then they will need care and this care is provided by institutions as there is no help to families as no one cares.  It is a post code lottery where you live too.  It is not just long term institutionalisation causing disablement but huge money is wasted on tribunals long and drawn out.   So there is money being spent/wasted but not in the right direction – towards decent care.

Once someone has been given a label such as for instance “Schizophrenia” they are told by a psychiatrist they have to take drugs for the rest of their life.  Well at the ISPS Conference I met more than one person there who has learned to cope with hearing voices and is living a normal life since not being on the drugs.  One person I met was even studying for a degree and that reminds me of Eleanor Longden – here is another prime example and Rai Waddingham.    More than one leading expert has told me that THERE IS NO SUCH THING AS SCHIZOPHRENIA AND NO BIO MARKER HAS EVER BEEN FOUND.   THERE IS ALSO NO SUCH THING AS TREATMENT RESISTANT.  Well I as a mother have always doubted this label and have only seen problems with Elizabeth’s behaviour as a direct result of the chemicals pushed at her.

It is business because keeping someone on these drugs long term these professionals know full well they are going to have an effect on that person’s physical health.  As far as they are concerned they are not bothered.  As long as that person is sedated and drugged so they can barely move in some cases and are weakened to the extent it is easy for them to control then this is what they want.   They want someone to control and this brings money to in house services and employment to staff within the “business”.   It is also big business for the pharmaceutical industry and they can continue to use a person like my daughter as a human guinea pig for life as when that person develops a serious physical condition such a diabetes and such as Parkinsons Disease then there is a new market for drugs to be given and more experimentation on the poor patient.  Elizabeth is showing signs of injury as a result of these chemicals.  I do not call them medication as they are not there to make her better at all –  I have already proven to the team the damage they are doing by tests I had done at the Bio Lab which the entire team have dismissed.  I have had these tests done twice.  Now Elizabeth has been offered a new drug –  the drug is not one for psychotic symptoms and I did not ask what it was because I was so horrified but an expert suspects it could be to do with Parkinsons Disease.  So Elizabeth is showing the onset of Tardive Dyskinesia but none of them could care less in the local team.  I have told the GP and the GP is referring her to a Neurologist.

Under the mental health the more drugs pushed the better as I have seen done to my daughter.  Every admission to hospital saw an increase  and when several drugs are given at one time no proper tests are made.  I have proven that drugs are given without thought to the patient’s physical health and even social services have got involved in trying to push Clozapine in the past and they are not even doctors.

When Elizabeth was sent to the private sector no one was in a hurry to see her go and she was going downhill as witnessed by the entire family.  I heard they keep people for three years under a section and I supposed they get sent those people who like Elizabeth was constantly in and out of hospital.

The taxpayer should be asking questions about the treatment of mental health patients as this is having a knock-on  effect to other areas of the NHS such as A&E and maternity – why should these services be cut back on account of care that is not working and it is all because of the system of forced drugging and restraint and cruelty to patients.  It is about lack of support in the community and drugs being pushed without any thought –  I can see at first hand where the money is being wasted.

I have attended this conference today with my daughter Elizabeth.  I thought it was very well organised and had some excellent speakers.  I was particularly impressed with the workshop run by Rachel Waddingham.  Elizabeth took part in most of the conference this time as at the INTAR conference I missed the bulk of the lectures as Elizabeth did not feel well enough but enjoyed the workshops.

For Elizabeth to be there at this conference it is an ordeal at first.   Whenever we leave the house Elizabeth feels does not feel well but this is because she hardly got out at all whilst under ” care” for the past three years.  Gradually I am hoping to build up her confidence but there is no help for someone like me as a mother because no one cares less.  A team prefers for someone to be in care rather than at home and home is clearly benefitting Elizabeth everyone has commented on this.    So I am taking Elizabeth to all my courses as I want her to hear from the professionals that are good and honest and very brave to speak the truth.  Jaakko Seikkula gave a very interesting talk about the wonderful care in Finland.  I had tried to obtain this wonderful care in Finland for my daughter previously by contacting the Embassy and being put in touch with the professionals but I was disappointed there was not a chance of me getting the right care as I would have taken Elizabeth to Finland personally.  She has spent some time working there and has happy memories there and has asked to go to Finland and I as a mother have been researching where the correct care is myself only to find there is nothing in the UK as yet to give choice to patients who do not appear to get better on the acute wards and this is causing problems with shortage of beds.  Jaakko Seikkula talked about Open Dialogue and this is something I myself as a mother and all the former patients and other mothers would like to see in the UK.  It should not be dismissed the fact that in Tornio, Finland they have a huge success rate and it is no wonder why.  Over here families are treated as invisible and especially if you dare to disagree with what these professionals have to say.  So I thoroughly enjoyed listening to the professionals who do have good things to say today.   I think if my daughter had this treatment she would get better and it would be nice to be included.  Elizabeth has always wanted this and has said so in the past. Jaakko Seikkula has been involved in developing family and social network based practices in psychiatry and psychosis and other severe crises and since the early 1980’s was a member of the team in Western Lapland, Finland for developing the comprehensive Open Dialgoue Approach.    See more at http://www.taosinstitute.net/jaakko-seikkula-phd#sthash.ihSFPWnZ.dpuf.

We attended one workshop by Rachel Waddingham, manager of the London Hearing Voices Project at Mind in Camden.  This was very interesting.  I I have witnessed someone in the family hear voices due to severe trauma over something that happened however Elizabeth has never heard voices which led me to question the diagnosis of Schizophrenia –  the only time I saw any kind of adverse reaction was purely down to the mind altering chemicals that would affect anyone.  I have listened to and witnessed severe reactions on more than one of these drugs.  The symptoms could well affect anyone whether they have a so called “mental illness” or not and that is another thing –  Eleanor Longden is right to use the word “condition”  – so Rachel is someone Elizabeth can identify with and she has been in and out of shocking acute wards  herself.  I quite agree with her about self help and peer support in recovery from extreme states of mind and holistic approaches –  I wish every professional could listen to what she has to say. How beneficial it was to take Elizabeth along to the conference and this workshop.   See http://www.hearing-voices.org and http://www.behindthelabel.co.uk.  I thoroughly agree with everything she has to say.  Other good speakers were Lucy Johnstone and Professor John Read who I spoke to as well at the conference.  I told him how much I would like to see action over here.  Now that things have been discussed there is the expertise in the UK however they all need to get together and do something urgently.  When peoples’ lives are at risk then more of these experts should be coming up with a plan of action  – Open Dialogue is one solution as it includes family unlike at present where you are treated as if you do not exist.

Any way I am glad I attended this conference and was very happy to show Elizabeth that there are Professionals out there who wish to see much needed change.

I would like to join Elizabeth as a member of ISPS and I would recommend this Conference to anyone.

I have been out nearly all weekend as I make the most of my spare time and take Elizabeth out places.

Saturday she has a personal training appointment at her gym.  I also had a meeting to attend where survivors get together to talk and express ideas and the aim of the group is to educate and members there have suffered terrible abuse and have been hospitalised and have experience of services, mostly bad.  However the group campaigns for improvements to current care and to draw attention to a system that is simply not working and I was shocked to hear about the experiences of some of these former patients.  If anyone should be listened to it is the members of this group (SOAP) who have experienced abuse and I know of others also outside of this group too and it is  not just former patients I am in touch with but mothers/parents who are affected and not all are bad –  if training for the police for instance and mental health professionals is ever going to be improved then these people in this self-supported group should be listened to by all professionals.  So the meeting was well attended and some new people came to this.  It is good for Elizabeth to hear the enthusiasm of these people to see change in the current system and humane care in place and it is good for her to see the strength in character of these survivors.   After the meeting I took her to see her grandparents, the grandfather is not at all well.  If Elizabeth was hundreds of miles away at the care home she would not be seeing the rest of the family like she is now and today she has gone again with her sister.

Today we have been to a fabulous party near Cambridge and I have not long since arrived home.

I had better get on now with all the housework and things I have not been doing this weekend and I am going to ISPS Conference next week and looking forward to meeting those Professionals who are talking about Open Dialogue and I am really interested in meeting them.

I will tell you all about this wonderful conference later on this week.

BY TOM COLLINS

In essence, the legal and commercial remit of the Psychiatric profession, as an agent of social control and financial gain, has been greatly extended (to help the police), beyond the considerable power it currently has with NO balance to provide protection in the other direction.  The legal reach and responsibility of Psychiatric Care stops as soon as a patient is on a locked ward.  This is a further gross imbalance to a system that has been in disequilibrium for decades.  It is likely to be profitable for Debuty Reichs Furher Boris’ “Golden Triangle of Opportunity between Oxford, Cambridge and The South East because we have a genetically diverse population of 8 million” (paraphrasing here) on which to test drugs. Laughing all the way to Astrazeneca’s payroll. (Oxbridge gets a £330 million biomedical lab. Ra, Ra, Ra). http://www.ft.com/cms/s/0/e86805f6-0e64-11e4-b1c4-00144feabdc0.html#axzz3D7IHDi00

The culture of West African christian animism has to be tackled because many staff hold the unconscious bias that clients with mental health difficulties are possessed by Satan.  There is a culture within the staff of using white sheets on furniture so they do not catch the demons like a dose of influenza.  No bibles, no promotion of 15th Century Bible values on the wards please, there is a chaplaincy for that. There is enormous unconscious bias towards Carribbeans in terms of the History of Chattel Slavery, in that this group were sold in to slavery to the Europeans by other West Africans and sent away. (From my experience and from what I’ve studied there is a “We didn’t want you in the first place” from West Africans towards Carribbeans and a “You sold us out to Babylon” from Carribbeans.  What would be useful is ensuring that ethnic foreign nationals are not homgenised collectively amongst the staff  (eg, for example a Yoruban primary nurse would be discouraged from employing Yoruban agency staff, encouraged instead to employ Igbo or Carribbean and other ethnic backgrounds to ensure patients have access to a diverse range within the staff team).  I have heard a Primary Nurse argue with another member of staff over not giving a shift to an agency worker because he was Igbo and not Yoruban.

There is currently, at least within the South London and Maudsley, a clearly definable caste system amongst the staff.  At the bottom rung there are the cleaning and auxilliary staff, which tend to be european, carribean male and african female. Then you move into the nursing staff and it is predominantly West African Male and Carribean Female. Then you move up to the Doctors and there are staff of mainly European, Indian and
Chinese heriatge. Then you move up the next rung and you have predominantly white European clinical directors and service managers, mixed gender.  Then into the Professors, which is Predominantly white male.  The Neo-Patriarchy in action, with a heavy dose of Neo-racism, with it’s base undertow of neo-colonialism.

The staff who I feel most sorry for are the nurses because they are stuck. Little option to move up but plenty of options to move sideways only.  There is a sense that they are trapped, like the patients, but the agency power differential means that abuses against patients are common as a means to vent their personal frustrations, and benefit the higher rungs of the hierarchy because it creates business opportunities and more pathologising of a vulnerable and  silenced patient group.

If the Department of Health wants to be seen to protecting the Human Rights of patients and staff the above two options are the only way forward. However the Department of Health is not serious as there has been a year long campaign to target children, pay lip service to symptoms (i.e. Mental Health Foundation’s month long “Anxiety Festival”), the disgusting silence of the Mental Health Charities as to this consultation (I call them the Trauma Vampire Industry as they have spent a lot of resources in encouraging the populous to look the other way and yet they have had sufficient contact with Parliamentarians due to May’s publication of a manifesto for mental health for the next administration and have remained silent to the point of feigning ignorance).

The consultation should be implemented in April 2015 in time to be drowned out by the next general election.  Most service users see the staff and the industry as evil. I think this is a mistake.  It’s just business. In the same way that chattel slavery and collateral damage is just business. Iatrogenic business practices will continue and increase because someone has got to invest in Dave, Gideon, Nicholas and Alexander Boris’ penicillin city.  The Police have become too expensive and problematic so it’s cost effective to push vagrancy, street drinking and criminal anti-social b_ehaviour into medicine.  A lot of cattle can become economically productive without having to go to work.

I apologise if I have caused offence.  There are complex ethnic, cultural and social problems for which most staff and patients are not responsible for. However the Department of Health is.

9.00 Tea, coffee and registration

9.15 Introduction and Welcome: Alison Summers, Consultant Psychiatrist, Lancashire

Care NHS Foundation Trust

Plenary Session 1: Alison Summers (Chair) _______________________________

9.30 Jaakko Seikkula, Professor of Psychiatry, University of Jyvaskla, Finland

Title: Challenges in developing Open Dialogue practice

10.30 Discussion session: applying Open Dialogue approaches

11.30 Tea and coffee

Plenary Session 2: Miriam Hodson (Chair) ________________________________

12.00 Lucy Johnstone, Consultant Clinical Psychologist, Cwm Taf Health Board

Title: Time to abandon psychiatric diagnosis: Arguing for a formulation-based

approach

1.00 Lunch

Workshop Sessions 1 __________________________________________________

2.00 Choice of 7 parallel workshops

3.30 Tea and coffee

Plenary Session 3: Jen Kilyon (Chair) ____________________________________

4.00 John Read, Professor of Clinical Psychology, University of Liverpool

Title: Creating evidence-based, humane mental health services: overcoming barriers

to a paradigm shift

Space for discussion & reflection ________________________________________

5.00 Panel discussion

The opportunity to ask questions of all key note speakers, share your reflections and

bring together the day’s learning

5.30 ISPS UK Annual General Meeting

Optional, but we hope that members and potential members will join us.

Open Dialogue in the UK (optional – following AGM)

An opportunity for further discussion with individuals actively involved in taking this

forward.

8.00 Conference dinner

Included in residential conference fees, non-residential attendees please enquire.

Wednesday 17 September 2014

Stamford Court, University of Leicester, Manor Road, LE2 2LH

Plenary Session 4: John Read (Chair) ____________________________________

9.00 Rachel Waddingham, Hearing Voices Network, Mind in Camden & Behind The

Label. Title: On The Edge? Talking about, understanding and living with ‘taboo’ and

‘violent’ voices

10.00 Jim Geekie, Clinical Psychologist, NHS (Lancashire Care)

Title: 10 Tall Tales from my travels: reflections on 15 years working in early

intervention in psychosis.

11.00 Tea and coffee

Workshop Sessions 2 (7 parallel workshops) ______________________________

11.30 Choice of 7 parallel workshops

1.00 Lunch

Plenary Session 5: Rachel Waddingham (Chair) ____________________________

2.00 Marius Romme & Sandra Escher, Association “Living with Voices” Maastricht

Title: Focus on the symptoms instead of on the illness and solve the ‘schizophrenia’

problem

3.00 Tea and coffee

Plenary Session 6: Brian Martindale (Chair) _______________________________

3.30 Arnhild Lauveng, Consultant Psychologist and author

Title: Which words can we use for unspeakable lives? Psychotic symptoms as

symptoms of life and life stories.

Space for discussion & reflection ________________________________________

4.30 Panel discussion

The opportunity to ask questions of all key note speakers, share your reflections and

bring together the day’s learning

5.00 Conference ends

Thursday 18 September 2014

Stamford Court, University of Leicester, Manor Road, LE2 2LH

We are no longer being bothered by the Home Treatment Team visiting our house nearly every night.  The Deputy Manager of the HTT phoned me at work and told me they were handing over are to the community health team and I was right to have my reservations.   I was told by the HTT Manager of a date next when the necessary blood test could be carried out but I told her that we would be away then.   Because I rely upon lots people to take Elizabeth to such appointments it is difficult sometimes to fit in  but I know this appointment is necessary at the end of the day so I went out of my way to arrange for more than one person today to be involved.  I thought it would just be a simple case of turning up to the local clinic and having this blood test done as I had already found out the times this clinic was open when I phoned previously. Elizabeth is not capable of getting herself anywhere at the moment.  She suffers severely from Agoraphobia and needs help in getting out places due to this and also she can hardly walk now since being put on Clozapine.  Whoever said this was a wonder drug!  Far from it as it is affecting Elizabeth’s physical health to such a degree that she is limited to what she can do.  It also causes weight gain apart from dizziness and she has complained of double vision to us.  Elizabeth has now been referred to a Neurologist as I am concerned about the sharp arm movements I have noticed whilst she is walking out and others in the family likewise have noticed this.    So I had arranged for someone to take Elizabeth for this appointmen at the Clozaril community clinict between 9.30 and 12.00 pm today but unfortunately I got a call whilst at work to say she could not have this blood test.   My first thoughts were that it was refused and I had to go out from my office and call the Home Treatment Team as the drugs were running out this weekend and without the blood test, the drugs would be refused and plus I had arranged in place people to help me which is what I have had to do all along in order that Elizabeth can stay at home in accordance with her wishes.  I later found out that the blood test had been refused because the nurse did not have the right sized needles and the ones she had were too big  so that meant that the carer I had appointed for Elizabeth had to hand over to someone else in order to get her to the hospital and she had the blood test done there and that meant having to go and collect the drugs from the pharmacy so two lots of waiting time for someone who is not well!  So when there was the problem about the prescription being given at the hospital the carer had to make calls but apparently a receptionist at the community team  was very helpful and went out of her way to ensure the carer was  initially able to collect two weeks of the chemical – things should never have been so complicated as this.  The nurse apparently said that if she had known Elizabeth was going to the clinic she would have ensured she had the right sized needles.  However I made a point of telephoning this clinic.  Before I knew that the drugs had been given for Elizabeth I got on to the Manager of the Home Treatment Team who was in a meeting and not one person has phoned me back.  My thoughts were that if things were not working out with the community team she needed to continue with the current arrangement.  Anyway tomorrow someone from the community team is ringing me and this person will speak about future arrangements – lets hope she rings.   For me to go mid-week to collect the drugs is far from convenient so I have to appoint people to help me myself.    Why cant I pick the drug up from a local chemist –  previously the drug was delivered to Boots and I could get there on a Saturday to collect.      I was told by someone there was not a clinic in the local area where I could collect the drugs and the only place was the community health clinic and I am going to get on to Novartis about this as I just cannot believe that an arrangement cannot be made to collect the drugs on a Saturday.  What on earth is going on.   It has been a very upsetting day for Elizabeth today especially as at the clinic she spotted someone she knew and I cannot say more than this but you can guess that this is not good at all and is a matter of health and safety.  Something needs to be done and it is a good job that Elizabeth has mentioned this to me as it could be detrimental to her health to suffer stress as a result of spotting someone she knew that I cannot talk about.    Anyway I hope I get that call tomorrow as it is important that things run smoothly from now on.   It is not fair on Elizabeth to have to go through all of this.

Elizabeth calmly said it all turned out well in the end but the impression I got from the carer was that all the waiting around  did affect Elizabeth and none of this should have happened in my opinion.

Anyway on a brighter note I have a party to go to at the weekend and a full day on Saturday where we meet up with friends, some of whom are survivors who can pass on good advice for Elizabeth having moved on in their lives despite their shocking care.  I am also excited about the course I am going on “From Diagnosis to Dialogue”  – thank God there are some Professionals in the UK who really want to see decent care and especially since I know of some decent professionals who have been trying to change the system for over 30 years and it is the Politicians who are the ones who should be listening to the patients and carers not just to the Professionals.  It is the taxpayer who is having to foot the bill for care that is not working and the system is abusive and it is a travesty that this abuse is allowed to go on in a so called civilised country.  Perhaps some of the Government ministers should attend these wonderful courses themselves so they can learn what needs to be changed.

It is not a long drive to get there from where we live and we had a wonderful day today.  The weather brightened up later on.  We first of all crossed the road to look at the sea and beach.   The sand was not as nice as Margate but Shoeburyness is a lovely quiet location and was not overcrowded with people.  We found somewhere decent to have lunch and after that we walked to the shopping centre in Southend which is very nice.  Elizabeth had presents to get for her Grandfather and father who have birthdays one after the other and the grandfather is currently in hospital.  If Elizabeth was miles away it would be difficult to organise things like this and help her as she asked to get the presents.  After getting these gifts we looked around the shopping centre and I was impressed and we made our way back for one last view of the sea and found a lovely café where we could sit outside that had a balcony overlooking the beach.   We then made our way back to the car and on our way back visited a friend I have in Southend.   The journey was good there and back with no excessive traffic.

As always when Elizabeth goes out she suffers panic attacks but I think the more she gets out the better – it is just a case of building up her confidence.   I do not know if staff ever said “Ok you don’t have to go out if you don’t want to” – however I think it is best to persevere and as always Elizabeth relaxes and enjoys herself and forgets her fear of going out altogether but walking is like walking with an old person.  She clings to me as she feels dizzy and I put this down to the drug she is on.  Inside places she can seem to walk OK it is just when we are out so she does seem to have a fear of open spaces and that is because she has been inside for a very long time and perhaps more should be done to ensure that patients are not kept in a hospital environment for too long to the point they lose their confidence like Elizabeth has done and can no longer go out easily – she has not once been out on her own but there are no activities provided so the best thing I can do is get other people to work with her – for instance she had a personal training session and came out of this like a different person.    I would like to have someone call to take her out places too this would benefit her.  The more she gets out the better but in the house she is OK.

As regards the Home Treatment Team we are no longer being harassed with all the visits and phone calls.   I got a call from the Deputy Manager to say they were stopping the visits and the “care” would be in the hands of the community treatment team.  Well someone will have to bring Elizabeth as I will be at work and I have had to arrange all of this myself as Elizabeth has to have the blood tests done with this drug.  I am glad that all the visits and phone calls have stopped and even collecting the drugs was better this time as it had been arranged that the drugs be left at the hospital foyer.  I do not know why this could not have been done all along and I have reservations about the other team and so does everyone else in the family but all that is needed is that Elizabeth is able to have the drugs as unfortunately nothing is being reviewed and I  have now properly registered her with the GP and she has had necessary health checks done.

Such a shame the weekend has gone so quickly but we try and do as much as possible  and I try and fit in all the chores with going out places  and I was up until 2.00 am doing the ironing in order that we could go out all day today.  

I am all in favour of this and cannot wait until Dr Walsh comes over here again and if there are 10 doctors out there who would be interested in training under Dr Walsh please contact me.   Myself and other mothers would like humane care like Chy Sawel and Soteria in the UK and you can see why if you look at my blog at some of the shocking examples –  I am in touch with lots of former patients who are all doing well for themselves and mothers who want to see a complete change and who can blame them.   Anyway Elizabeth has been for her second personal training session.  I dropped her off at the gym and went shopping.  I have been up really early today as I have had an important appointment but Elizabeth was resting whilst I was out and ready for me to take her to the gym when I got back.  She is starting to take initiative now and even got on with the ironing without being told.  This is very good because the more she is doing on her own without me telling her the better and this bring hope of independence.   I am hoping that with more sessions at the gym and it will take time Elizabeth will go out on her own.  It has been over two months now but Elizabeth relies of other people to take her out and can suffer anxiety initially before she even goes out the front door – the more this is encouraged the better but I have to rely on friends to help me during the week and I have the weekend to do what I can to help her.  The biggest help though will be the personal training sessions and I have been in East London today and I will be taking Elizabeth back to East London later for aromatherapy.  Where on earth did all those oils go.  I am going to have to contact Dr Tracy and get some more and these were beneficial at the Bethlem Royal Hospital where the care was all about Clozapine and was worse than any prison.   I would like such wards livened up at the weekends with entertainment and relaxation classes which is something that I myself was going to bring to the ward before I got banned.  Anyway  in a different area where there were markets and shops it is all too easy to get carried away and I ended up spending money on both myself and Elizabeth.  It is a good job that I had to watch the time in order to get back for the personal training session as the longer I spent the more money I would part with.   I have my car back now and it has been MOT’d etc and has yet again cost me but never mind.    Elizabeth want to go to the Yoga studio which is up the road and I may take her there before this other appointment.   As usual the weekends are extremely busy for me and I have a course coming up “From Diagnosis to Dialogue – run by ISPS at Leicester University 17 – 18 September.  I am hoping to take Elizabeth to further her knowledge.  There are some interesting speakers Arnhild Lauveng, Marius Romme, Sandra Escher, Rachel Waddingham, Lucy Johnstone  Prof John Read, Jim Geekie and Jaakko Seikkula and I would be interested in going to Finland myself with Elizabeth to see what care is available in Tornio and all the more reason that the UK adopts this successful care over here as I can see that the care is not working here.  Open Dialogue is the way forward.  The Conference is about experience of psychosis, their family and friends.  Family is something that is forgotten about in the eyes of the team so if this is a conference for Professionals and for people with experience I am looking forward to this very much.  In my opinion politicians should get themselves down to this conference so they can learn what changes need to be made.   I am also booked on the carers UK Conference and I have seen an interesting one run by Soteria in Manchester –   I may see if I can attend this too.    All of this is confidence building for Elizabeth as there are usually people who speak who are now getting on with their lives and set a good example.  Elizabeth also enjoyed taking part in a workshop at Liverpool’s INTAR Conference where I met wonderful people who wish to see positive change – social workers of all people!  Definitely well worth a visit to Liverpool and now Leicester –   well it is good to see so many professionals  who wish to see change and the best advice can be found at the universities where professionals there are up to date with things.

Anyway I had better stop here as I need to get out and see all the wonderful shops in East London with Elizabeth this time and then she has her appointment in the early evening.

I have found wonderful care in East London namely Dr Health –  Acupuncture, Massage and Herbal Medicine although I booked for Elizabeth Aromatherapy.    As regards herbal medicine it is worth checking as to whether there could be any interactions with the drugs that person happens to be on but I was recommended Acupuncture for Elizabeth and I keep an open mind about these alternative solutions and there were many letters up on the wall to show how effective they were but such care on a regular basis may be expensive but then perhaps this would be better than what Elizabeth is currently on  I am willing to try the acupuncture that Elizabeth has shown interest in.  It does not make sense to me if the drugs are not working then this is a waste of money and there is other care that could be on offer instead that could be effective for the patient.  When all else fails it is worth trying other things rather than just plod on with the same drugging one drug after another and force this upon a patient.   When something is forced upon someone then this kind of care is no good and not therapeutic in my opinion and the minimal rather than maximum drugs should be given.  

Elizabeth has spoken today about a shocking drug called Quetiapine and that this gave her a bad reaction and nothing is properly tested but when someone is on 800 mg or more then this should be looked at very careful and this shows that there is no regard for physical health of a patient.   Elizabeth’s verdict on Dr Health was “excellent”.   This is the kind of care that should be on offer in order to help patients come off the wards and would this not work out cheaper than having a patient stay for weeks or years and years on end in an acute ward.  I have seen nothing but progress since Elizabeth has come home.    She is doing things using her own initiative and I am amazed.  They may be things that people do or take for granted however I am well aware that Elizabeth has been in the system for a long time and to me this is a great sign of improvement the fact I am not having to tell her every step of the way and she is thinking of things herself.  

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