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Monthly Archives: February 2016

I’m looking forward to attending this forthcoming event with Elizabeth and possibly one of my carers, an expert on nutrition who I took to meet Dr William Shaw.    I’m looking forward to meeting Robert Whitaker again who I last met at the CEP’S Conference “More Harm Than Good” held at Roehampton University.    Sandra Breakspeare has organised wonderful speakers to take part in the 7th Conference of Chy-Sawel and I hope to meet up with all the other parents who are badly affected having sons and daughters stuck in a system that is failing so many.     I would like to draw attention to the fact that Sandra is trying to raise money in order to provide a much needed facility in the UK (suitable premises have been seen) so anyone interested in investing in this wonderful project please contact Sandra Breakspeare (info@chy-sawel-project.co.uk)  Tel:  07814489701 and 01736 795748 .    When beds are overflowing and demand high for mental health care/services it is obvious that the current care treatment is not working and there needs to be choice and proper assessments.   

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My above true story of when Elizabeth came home is why we need change and decent humane care. I attach the link for the Chy-Sawel Conference which includes Agenda and booking form below.   Elizabeth has been at home now over 20 months and care is through peer support, close friends and family.  

I intend to drive down and  stay a few days in Cornwall prior.  The Conference will be held at Sandy Park Conference Centre (Estuary Suite)  EXETER  Devon EX2 7NN on Friday 13th May.

I attach the link for Agenda and Booking Form and I’m looking forward to meeting up with everyone.  There are parents I know who are attending who are who have sons and daughters imprisoned in the system for many years, despite not having committed any crime yet treated like prisoners, deprived of the human rights and spending time with their families and these patients who are often sent many miles away from home are drugged at enormous levels.  Yes, this is the shocking reality about what is happening in the UK today which is not being publicised in the national press.   No institutions are in a hurry to let go of someone go quickly when they are receiving thousands of pounds per week and it is all about “business”, not care.    These young vulnerable people are left to go downhill in institutions and Elizabeth was sent to Wales and discouraged from  having family contact – supervised phone calls and restricted leave.   As a result she has come out of the system disabled.  This is why we need choice such as  CHY_SAWEL as they intend to take a very different approach that is humane and focuses on nutrition as this an area that is neglected under current mental health care.  It is good to see Nick Putman attending who is promoting the Open Dialogue Approach.  As I have told my local area this is what is needed – an open transparent system of care like in western Finland.

A new approach is definitely needed and Chy_Sawel is the answer.

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Elizabeth is out at the moment with her carer.    If it was not for my carers I don’t know what I’d do. Elizabeth would otherwise be stuck indoors and I would have to review everything in my life, including where I live and would have to even consider moving.

The other day, the telephone rang and Elizabeth went to answer which is something she would normally avoid doing.  When someone asked for her by name she dropped the phone thinking it was social services but it was in fact just a sales call.  Such is the effect caused by a team of professionals who used bullying tactics  at the time when we were due to be taken to Court.   Incidentally we have not been refunded the fares/expenses for the court which I think is really bad after all this time and we can all see the full extent in the files of how team members back one another no matter what and they all stick together.     This experience has had a devastating effect on Elizabeth and my carers are not too happy either at the comments made.  The result is that there is no trust.      It is now over twenty months since Elizabeth has come home and it would just be so nice if some of the people who are helping me right now received some recognition for what they are doing voluntarily and expenses fall on me but no-one cares.     Whilst the local Council wish to increase council tax/make savings by cutting back on services there is no end of money when it comes to taking people to court and all of this is decided as being in the “best interest” by certain professionals who really know little about my family. You certainly cannot go by the files as even past history is incorrect and there are plenty of errors so I can see.   No change in treatment has been suggested by the consultant psychiatrist and from what I can see from the files, the main concern of all the professionals was that Elizabeth complies with the “treatment” of  last resort drug Clozapine.  Clozapine is supposedly a “wonder drug” for Schizophrenia in cases where other chemicals have failed but Elizabeth is also recorded as being “treatment resistant” and this means poor/non- metaboliser but what about all the other diagnoses in the files and my request assessments have been ignored.  I do not have a good word to say for this drug Clozapine or any of the other drugs given.  This means that treatment could be entirely inaccurate and the team are taking the easy solution by ignoring the test results from Holland and   continuing with drugging for life by Clozapine.  No-one in the team will take any kind of responsibililty and if you dare to dispute their decisions regarding treatment you get the kind of treatment I have previously documented.      If other similar cases of wrong diagnosis are disputed these should be fully investigated and this can only be done by proper and thorough assessments like I have obtained in Holland by the world’s leading expert.

Today I had a call from someone as I had written to everyone in my local area such as the Leader of the local Council, the Director of Social Services and the Chief Executive of the MH Trust as well as my local MP who Elizabeth and I went to see not long ago and we asked to be transferred to an area where Dr Rassaque is coordinating Open Dialogue.    We have met some very good professionals by attending conferences organised through ISPS and INTAR.   Unfortunately I heard that Open Dialogue is apparently not being considered in my local area but in other areas I believe such as Nottingham and Liverpool things are moving forward by professionals who do listen and recognise the need for change and I am glad to see that we are not alone in waiting something better, a system of openness and honesty that does work unlike at present.

 

I have found wonderful care from a team of helpers, close friends and family but when someone has suffered trauma they need specialist help but who can you trust when even the art therapist likes to come up with labels.   Incidentally, I am waiting for these labels to be removed from the files but I have not heard from the CEO about this yet.   I think there needs to be other corrections made to the files and I need to go through them thoroughly and make a note of all of these errors but it is a question of when I can get round to doing this as I am so busy.

Elizabeth is due to undergo a review of benefits soon – I will let you all know how this goes and I have had to ask for my carers to be present at home.    How can someone deal with such matters and attend meetings and deal with appointments etc when they are too afraid to leave the house alone let alone answer the phone and to overcome this and, as Dr Bob Johnson recommended in his report “intensive trauma therapy” should be given. The fact that Dr Johnson’s report has been ignored is the reason Elizabeth has not got better and suffers from Agoraphobia and relies on my carers to take her out places.  As nothing has been provided for my daughter in 22 months I have been trying to find out about what is available myself.   Elizabeth needs help with cooking, washing up, ironing, prompting to do things in general – she is like a prisoner of her own mind. Elizabeth finds it hard to speak to people as she has been imprisoned in coercive environments.   Today, following a recent letter I’ve written, I had a call from someone wishing to investigate my concerns but I said that I can see exactly how complaints are handled and dealt with in my local area and always the answer comes back that they are “satisfied” and even excellent is a word mentioned to describe the care provided.     There is no accountability as noone wishes to admit anything to be wrong or make any necessary changes.

On a brighter note I had a good weekend last weekend and went to China_Life Tea where they had New Year celebrations taking place.  Elizabeth enjoyed this and the buffet and talks on teas.  I have a good selection of teas at home and now have no end of healthy food as I take more notice of the labelling on products.   Even in a health shop you still need to take notice.  Luckily one of my carers is an expert in these matters.

Elizabeth’s Birthday was a week ago and she went to see the rest of the family and they all went out to a vegetarian restaurant in Cambridge.

As regards the future for Elizabeth it is too early to say.   I would naturally like her to do something good with her life and have a job- we do not even have a care plan after all this time yet there is money in the Better Care Fund and now I have read an article in the Evening Standard about this fund but I would dispute the amount as I have seen billions mentioned nationally.    There seems to be a huge discrepancy.

To place someone in care costs £60000 a year and hospitals are even more astronomic.   The result is that Elizabeth is now disabled to the point of not going out like she once did, no longer able to go shopping alone or get on a bus as she once did.  No longer to even walk down the road alone a short distance and I have tried to encourage her.   Elizabeth has become dependant on others sadly and I do not know what any further investigation into my concerns will bring – it is action not words that are needed.   I said today that the whole system needs to be changed  – I believe no-one should be written off and this is where money is being wasted by writing people off and subjecting them to a lifetime of drugging and by keeping vulnerable patients incarcerated in hospitals/care facilities for years and years on end, drugging them to the hilt resulting in disablement.

It is a pity there is nothing better in the UK in terms of facilities and that is why I would like to see Chy_Sawel set up.  The Chy_Sawel Conference is coming up soon and is going to be held at the grounds of Exeter Chiefs – Sandy Park Rugby Club commencing 9.00 am on Friday 13th May – Exeter, Devon.   I shall soon be posting more details regarding this and the Agenda.  Robert Whitaker is speaking amongst other wonderful professionals.    It is natural that parents want the best in terms of humane care ie.,  care that is not all about forced drugging or ECT and proper assessments given with a strong emphasis on nutrition.   A place that gives proper assessments and not all about drugging at extreme levels like current treatment is needed.  It is no wonder beds are overflowing under the current system – it is because the treatment is WRONG!

 

 

 

 

“I know electroshock survivors, and I’ve been on a psych ward while it was being practised on my friends. While you may be aware of the hazards (heart attacks, brain bleeds, memory loss), what you probably don’t know about is what happens to them as people who you interact with. They have a stare in their eyes, where their eyes don’t move like a normal person’s. It seems to look through you. They may have a smile on their face, but it is a goofy smile, empty of real expression and emotion or comprehension of what you are talking to them about. Years later, you can still see these effects. They have been hollowed out somehow as people, the connections in their brains fried with electricity so that they are no longer complete persons. It is a sad thing to see, and to witness happening. Shock is not effective in relieving depression or anything else beyond the first few weeks after it happens, when the brain, having suffered an injury, is trying to repair itself and so it seems that the activity of the mind has changed. In fact, it has only been damaged, and the electroshock survivors whom I personally know are all angry and confused about what was done to them, but they have been too brain damaged and intimidated to try to fight back any more. Electroshock is not “treatment.” It is a form of brain damage and torture, and I hope that you will prevent anyone from allowing it, because once you do, it will become “required” and that many more people will suffer. This is how the system works. When doctors can’t help, they use whatever extreme methods might be available — regardless of the harm that is done. Please do not allow electroshock to become a first-line treatment. It would be devastating to the public, and to many people who do not deserve this — especially when you consider the absolute dearth of genuine informed consent in this country. Please make a principled stand against it.”

FDA: Stop FDA from Down-Classifying the Shock Device to a Class II Device Stop shock treatment. – Sign the Petition!

ERIC COATES JUST SIGNED THIS PETITION ON CHANGE.ORG.

“I think that psychiatry is winning because it deals with each one of its victims in isolation, alone, and without real friends who can help them. This has been true ever since the first asylums were opened in medieval Europe, where mad people were confined in buildings that can only be described as jails. Those who were loud were chained to the walls. Those who didn’t obey were beaten. Those who didn’t understand what was being said to them or who fought back a little to protect themselves were locked in little rooms without heat, without clothes, without a place to go to the bathroom, and starved into submission. This is not unlike the solitary confinement units of the worst prisons today. Every person who has mental problems is dragged in front of a psychiatrist, who, without any psychological training at all, simply prescribes a pill and then throws that person back into the ward. At the New Hampshire Hospital in Concord, New Hampshire, there are now only two psychologists. Two. For a couple hundred “patients.” But psychiatrists and nurses who dispense pills that pacify you like chemical chains now number in the dozens, and the jailers themselves — the “mental health workers” — number in the hundreds. Some of these people are genuinely there to help. But what they don’t realize is that every single person who enters the place is brought in in isolation, never gets to choose their own caregiver, never gets to choose their own lawyer, never gets to choose their own “treatment.” On the wall of the psych ward, there is a list of your rights, including the right to be “consulted with about your treatment.” This sounds great, but it never happens. To be “consulted with” means only that you are informed of what will be done to you, and if you resist — as I have — they will use the courtroom down the hall (hidden from the public, hidden from anyone who might help you) to take away your rights so they can do what they want to you. A psychiatrist, all by himself or herself, might seem like a noble person. But when you realize that they have the whole force of law, and of an institution that is designed like a prison, and a whole team of enforcers called “mental health workers” to enforce their will upon you, you have to realize that this is not “treatment.” This is a whole professional football team attacking the one guy who happened to wander out of the stands in confusion, and they do it time after time, day after day, year after year. When they’re done with you, most people would never have the courage to fight back again. And that’s how they’re winning. One victim at a time, isolated and removed from any help. Beaten down until they wouldn’t dare to help anyone else. Over and over and over. It’s time to fight back.”

 

 

 

 

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The true story above regarding Elizabeth’s return home from the care home reflects the need for Open Dialogue and change in the way care is given in my local area but sadly I understand from speaking to Dr Rassaque that my local area is one that is not included in the pilot scheme for Open Dialogue.    I would like to see open dialogue compulsory so that our experience is not repeated and nationally an open and honest system is adopted.   You have only got to look at the situation of wards overflowing, patients being long term incarcerated and the huge expense of this to the general public.  This affects everyone and it costs a fortune as I can see from my Freedom of Information Request to send someone to private hospitals and so called “specialist hospitals” where the “care” is just the same – drugging.    This is no answer at all and I have proven that treatment has been wrong in Elizabeth’s case as she cannot even metabolise the drugs.

At yesterday’s Open Dialogue Meeting held at Friend’s House in Euston I met up with others including professionals who wish to see change.   Thank goodness there are some decent professionals.   I met up with some of the mothers I am in touch with who have sons/daughters trapped in the system foryears on end, who are fighting for their release and an alternative to the current cruel and rotten system that deprives their sons and daughters of the basic human rights such as spending time with families at times such as Christmas, regular leave and the right to treatment of a humane nature.  Instead they are witnessing their sons and daughters stuck in hospitals or care homes a long distance away from home and drugged enormously with disregard to physical health and on a never ending sentence.   Sandra Breakspeare is one such mother I am in touch with  and I think it is apalling that her son has been incarcerated I think she said for circa 15 years and this had led to him going downhill.    Sandra wishes to set up Chy Sawel and myself and other mothers would love to see this up and running.  I think there is a need for such facility as not everyone is suited to acute wards and they should definitely not be used long term.  In Elizabeth’s case, she has been sent away from home to Wales and incarcerated for three years and she has come back disabled.  She has not been out alone since coming home and I have had to appoint friends and immediate family as carers as no one cares in my local area and as we have been have been through Court of Protection which was very stressful for Elizabeth and not the first time either that we have been taken to court, you just lose trust in those who are supposed to care but it was good to see that in other areas there are people working in the profession who are passionate about change.    I have proven that Elizabeth can improve at home by way of correct diet.   We took part in Open Diaglogue with some professionals through our membership of the wonderful organisation ISPS – it was good as there was no feeling of “them and us” –  there is a sense of equality – inclusion rather than exclusion and Elizabeth was encouraged to participate in the workshops.  Elizabeth commenced the session of open dialogue by talking about how it felt to be taken to court.   It is very important to be able to trust those involved with your care.   It is difficult to trust professionals in my area from reading all their nasty comments in the files.   There would not have been any problems if open dialogue was available but like the standard of care it is a post code lottery so I can see.

The Programme of Open Dialogue UK 2016 Conference was a full day of interesting discussions which encouraged audience participation commencing 9.45 am ending at 16.45 as follows:

9.45 am   –  Nick Putman- welcome and introduction

09.55 am – Jaakko Seikkula –  Open Dialogue Approach – value of openness & democracy

10.35 am  – James Davies, Sami Timini, Jacqui Dillon, Peter Kinderman – Reflections from                                                                                                                           Panel

10.45 am – Jaakko Seikkula – Response to reflections

10.50 am – Volkmar Aderhold, Petra Hohn – response to reflections

11.20 am – James Davies, Sami Timini, Jacqui Dillon, Peter Kinderman – Reflections from                                                                                                                            Panel

11.30 am – Volkmar Aderhold, Petra Hohn – Response to reflections

11.35 am – Questions from /dialogue with delegates

12.00 pm – lunch

13.00 pm – Pablo Sadler, Ed Altwies – The Parachute Project in New York

13.30 pm – Russell Razzaque, Val Jackson, Anna Arabskyj – Peer Suported Open Dialogue                                                                                                      pilot project.

14.00 pm – Anne Cooke, Rachel Waddingham, Sarah Carr, Julie Repper – Reflections from                                                                                                                          Panel

14.10 pm – Pablo Sadler, Ed Altwies, Russell Rassaque, Val Jackson, Anna Arabskyj –                                                                                                                      Respose from Presenters.

14.15 pm – Questions from /dialogue with delegates

14.35 pm – Iseult Twamley, Rafaella Pocobello, Amy Morgan, Werner Schutze – a taste of                                                                                                          international developments.

14.55 pm – Nutritional networking with tea,coffee and biscuits.

15.25 pm – Corrine Hendy/Leslie Nelson  – Peer involvement in open dialogue

15.45 pm –  Nick Putman, Olga Runciman, John Joyce, Lauren Gavaghan – Open Dialogue                                        UK –   Training and related developments within the NHS

16.05 pm – Anne Cooke, Rachel Waddingham, Sarah Carr, Julie Repper  –  Reflections                                                                                                                           from panel

16.15 pm – Corrine Hendy, Leslie Nelson, Nick Putman, Olga Runciman, John Joyce,                                                   Lauren Gavaghan – response from presenters.

16.20 pm – Questions from/Dialogue with delegates

16.40 pm – Nick Putman – Final Comments

16.45 pm – Finish

 

As you can see from the above – a full and varied day with wonderful professional speakers both from the UK including international speakers and this gives hope to people like myself.

Sandra Breakspeare of Chy Sawel showed me some fabulous premises which would be ideal for the alternative care centre Chy Sawel which we as mothers would like to see set up.   I hope that the funding can be found as there needs to be choice in care and there is certainly demand for such a centre.  I have come across professionals who dismiss the idea a nutrition approach to MH care  but I would dispute this as I can see that now Elizabeth is home I am seeing real improvement due to change of diet/nutrition and I am extremely lucky to have someone who is helping me right now and who is an expert on nutrition.   Chy Sawel  hopes to offer a holistic approach and have a conference coming up on the 13 May with speakers such as Nick Putman, Robert Whitaker – I shall feature the Agenda in due course and will attend along with Elizabeth.

It is some time since I have written my blog last but all is going well which is thanks to my brilliant carers.

I shall write shortly about the Chy Sawel Conference.

 

 

 

 

 

 

 

 
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