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.