OPEN DIALOGUE UK 2016

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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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6 comments
  1. Eric Coates said:

    Thanks for keeping us up on this. Wish I could be there.

    • sbev2013 said:

      And Eric we are all getting together on May 13th for the Chy Sawel Conference – everyone is welcome and I will post the details of this soon

  2. redberry said:

    Well done for writing exactly what I was always thinking about this “drugging”culture. I hope more psychiatrist would pay attention to “OPEN DIALOGUE”although it could be difficult. I have a feeling that majority of them might not want to lose their power to abuse patients and carers. I always wonder, what is their so called “monitoring” and “observation”?

    • sbev2013 said:

      Absolutely! It is all about power and control but the public are not being informed how much money is being wasted that could be better spent on improving the NHS. It is not the answer to drug someone who may have themselves suffered extensive trauma or abuse. It is not the answer to keep someone incarcerated for the rest of their lives – some of these doctors as well as some professionals are absolutely ruthless- Article 8 HRA frequently abused and whilst A&Es are being closed and hospitals downgraded. It costs thousands to keep someone locked away and basic human rights are being abused – only very occasionally does the press feature abuse to the elderly and disabled when abuse is rife and open dialogue I believe is the answer. How can you trust some of these professionals who write so nastily behind your back. To come off these drugs there is no help. Instead a patient is told like Elizabeth that she has to take drugs for the rest of her life. It is like a never ending prison sentence and if you dare to disagree you get treated in the most apalling and stigmatising manner by a team of professionals and their professional body protects them as does the GMC and other similar organisations. All in the name of “care” under a so called democratic country. Elizabeth is not in a fit state to work – she needs prompting to do basic tasks. She is too afraid to go out alone and I have had to appoint my own carers as I work. So now Elizabeth has received a letter from the job centre. As much as I would like to see Elizabeth working and away from the apalling mental health system I know it is not possible right now and I am having to arrange for someone to take her to this appointment. I will let you all know how she gets on – for anyone who thinks it is that simple to get a job they have no idea when drugs are given such as clozapine and when someone has been long term incarcerated like Elizabeth who has had no help since coming home from the care home. I intend to feature this in detail.

      • redberry said:

        Is Elizabeth taking Clozapine?
        I guess majority of the people who have been hospitalized in mental hospital have been abused indirectly or directly by being drugged without their knowledge,being brainwashed, being labelled and stigmatized by the hospital staffs. The whole system has to change. Mental problems can’t be cured by chemical. If it is that simple, why do they not recover?
        I hope “Open Dialogue” training would be compulsory for those who work in mental health in near future.

      • sbev2013 said:

        Unfortunately yes she is on last resort drug clozapine – an advanced statement was ignored / having had a bad reaction to c800mg quetiapine was meant to have had a drug free period – do drugged up all she knew was that she was on a drug beginning with the letter M. You are so correct when you say MH problems cannot be cured by the drugs.

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