VISIT TO ELIZABETH AND THE MOTHERS MEETING

Elizabeth’s sister has just got back from visiting and they had a nice time together in the beautiful peaceful setting of a farm.  This is the kind of place Elizabeth needs to be whereas I live in London and whilst I would have Elizabeth home she now seems to suffer more panic attacks than I have ever noticed before.  Elizabeth’s sister took her out shopping and for meals but it was a flying visit.

I have been busy at the last minute clearing my house for builders –  I am in such a mess now with boxes everywhere and I have managed to sort this out.  Tomorrow I am very excited at meeting up with mothers who are in the same position as myself and some have had to  make a long journey to London whereas the venue for this meeting is easy for me to get to.  I offered to have mothers to stay overnight even though I am in a mess with the decorating as this is just an informal meeting but I hope this will lead to a Facebook Page with links to Twitter so that all the mothers can write and talk about what is really needed in terms of care.    Mothers like myself who have sons/daughters sectioned for years on end who are written off like rubbish and drugged.  What kind of law allows this.  This is why we need a specialist centre to carry out proper assessments and offer humane care.  I am disgusted that in a so called civilised country this sort of thing is allowed to go on.  I have  not got a good word to say about the law that allows for this abuse.  I hope to address all these issues soon in a very important meeting on my next day off.

One of the mothers owns a restaurant and that is where we are meeting to discuss a unique care that is not on offer in the UK – however having said that I did look at one centre that looked extremely nice but was about £1000 a day!  The location of Central London would not suit Elizabeth and therefore I am happy for my daughter to make a fresh life in a more peaceful area just so long as the care is right.  The care is wrong right now as it is a hospital acute ward under private sector care yet the law in Wales I thought allowed for holistic care. If contra indicated drugs are continually pushed at my daughter at 800mg a day this is not a good situation but there is nothing I can do right now however that does not stop me from questioning things.

When I could see that NONE of the fourteen mind altering LSD like chemicals did not work and when I spotted in the files about 5 different diagnoses, the two main ones being Schizophrenia and Aspergers I started to question everything.    I started to buy books and these books have been very informative.   Out of a bad situation comes a positive situation – I would never have met so many wonderful people – strangers who have stepped in to help me like SOAP for instance and mothers who have written to me via my website and some have passed on invaluable advice. 

Some professionals have even stepped in to give me advice –  these professionals are lawyers, doctors,  scientists. 

The public are being misinformed about many things and it is only when you are in a situation like mine that you really look into matters but whilst many people may not wish to even think about mental health as it does not affect them they should be concerned about the public money being wasted and A&Es being closed down and I believe huge savings could be made if the mental health system was properly looked at.

There would be n o need to force drug someone or keep someone locked away forever if scientists were involved in relation to the drugs.  For instance a scientist would have experience and understanding in adverse reactions in psycho-pharmaceutical medications as well as interactions with drugs in general medicine.  Well not one psychiatrist has been concerned about this and I as a mother could see that the behaviour of my daughter was nothing to do with her diagnosis.  The behaviour was caused by the drugs – she really suffered on these drugs especially on 750 – 800mg of Quetiapine.  That is a large dose and in the end I saw the effects this drug was having on my daughter.  Not many people are questioning what knowledge do psychiatrists  have of the workings of these drugs.  Some may have knowledge but many do  not and even I as a mother could see that.

I am in touch with more than one leading expert right now who tell me faulty drug withdrawals carried out by psychiatrists who know absolutely nothing about pharmacokinetics or dynamics.  Not only this – Doctors who prescribe without testing for tolerance, contraindications, concomitant prescribing or drug metabolites.  Apparently I am astounded that there are many like this around.  What is the Government doing about this situation.  It is all well and good to impose CTOs and never ending sections costing as much as several thousand pounds to the taxpayer a week when NHS care fails and private hospital care takes over.  However it is no wonder the care is failing when so many professionals do not know the workings of the drugs.  It is like myself as a mother prescribing drugs.  Social services even tried to step in desperately to push Clozapine at my daughter.  What on earth do they know about the workings of the drugs and now I am hearing that psychiatrists do not know and as Doctor Tracy said some are on the drugs themselves –  well I would not be surprised to hear this at all judging by some of the behaviour I have seen.

 

If for instance someone is being reduced off the drugs the professional should know about the half lives of them and suggested rate of reduction and effects on any other medication.  This is very worrying.  What regulations are in place to ensure that patients are being looked after properly by psychiatrists if they do not know thoroughly about how the drugs work.   If a reduction is not done properly then this can lead to relapse and severe reactions and from what I have heard from other people this is commonplace.  I as a mother would insist on having a bio medical scientist involved who can demonstrate extensive knowledge of the drugs. 

I noticed at the Bethlem they present a sheet of paper telling a little about the drugs being prescribed however I have much more knowledge to share with them and the psychiatrist was extremely dismissive.  He even said that he had enough reading to do. 

It is no wonder there is so m any problems as patients are not being treated properly and the law should regulate who prescribes the drugs and the way the drugs are prescribed and proper extensive tests should be carried out for tolerance and contraindications, concomitant prescribing /drug metabolites. 

It is not good enough what is going on in the UK and I want something done about it.

I have been recommended to buy the book by Grace Jackson.

I think it is wrong that anyone should dismiss evidence in terms of adverse reactions and if an expert does a report that may make recommendations in terms of treatment and care in no way should this be dismissed under the law.

I will be going to see Elizabeth soon.  When we took her out last time she could not get out of the car and then it took two of us to support Elizabeth walking down the road as she felt dizzy.  Elizabeth is in bed by 8pm –  she is only 26 and should be out enjoying her life.  How can Elizabeth get a job – what is going to happen when she is released from hospital and is unfit and unwell to go down and fill out forms and advise the job centres.  However if there was decent care like Chy Sawel set up there is hope for my daughter and hope for some of the former patients who are doing well for themselves.  These people I would so like to be able to help my daughter not just professionals but inclusion of some of the former patients themselves and open dialogue. 

I hope Elizabeth  gets out of hospital soon and that there will be a team involved who communicate and do not not try and sever contact with her family just because they do not like me as a mother.  None of this would be happening if it was not for the law that needs complete change in my opinion.

 

I do not phone Elizabeth every day.  I do not advise Elizabeth to stop taking the drugs yet that is what I have been accused of doing but what if everything is wrong and professionals just wish to plod on giving the same treatment all the time.     It is especially sad if you have written proof by an expert of what is wrong and this is ignored.

I will write about the mothers meeting tomorrow- it is shocking that so many are affected and this makes me all the more determined to see Chy Sawel set up. 

 

 

 

 

 

 

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