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.  

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