I did not know whether Mr Asaria would bother to phone me as I had trouble in even being acknowledged and getting past his PA. However I was pleasantly surprised today when first thing in the morning as promised Mr Asaria did in fact telephone me and dead on time. I would have preferred a visit but this is better than nothing.
I am a firm believer that communication is so very important and how you deal with someone can have either bad or good effect. For instance even is someone cannot give you the answer you need they bother to telephone you. At the weekend I came across a good example of communication under Cambian. My daughter Elizabeth telephoned me to say she had a lump on her head and had been referred to a doctor. I was naturally concerned as no one had said anything but it is all down to confidentiality and that can mean that the family and in my case Nearest Relative do not get to hear vital information. Anyway I telephoned the hospital and a nurse responded to me in a very nice manner unlike some of the response I have had in the past. This nurse obviously had to check with my daughter first before disclosing information but did not make a song and dance over it. I felt that I was treated well.
Also I felt that Mr Asaria dealt with me well too but whether or not he chooses to defend his staff and take sides is another matter as I have seen very defensive behaviour from teams when mistakes have been made and have had very negative responses when the team all try and stick together. I would respect honesty and even if a mistake had been made to own up to it or at least be honest. I am not the kind of person who would just go out there and get a solicitor and take someone to court just like that – the chance would be a fine thing anyway the law is heavily stacked against the weak and vulnerable and it is near impossible to find a lawyer to represent you beyond Tribunal level under mental health. What means far more to m e than any level of so called compensation I/my daughter may be entitled to is good communication. What more can you wish for than proper communication and this is something hard to find under the mental health system.
I appreciate there are many who would like to see change and I know what it is like to be on the receiving end of the worst kind of bullying and that is exclusion. I would rather be called all the names under the sun than suffer this kind of bullying where no one communicates and they erase you from the life of the person you care for even though you may have been distanced from that person. It is harmful trying to get a weakened patient surrounded by the team to take sides against her mother but this has been going on. I am not interested in any team member being reprimanded on this score – all I want is for changes to be made and instead of playing on capacity and confidentiality like they have been against the reforms that Mr Norman Lamb and David Behan want to bring about, it would be nice for the team to be open and honest and provide the next best thing to what is going on in Tornio Finland where they have 95% success rate. Families can often be the cause of distress to the person who is mentally ill but sometimes something may have happened outside of the family in terms of trauma – either way nothing is to be resolved by the current system of exclusion and trying to get rid of the mother as the Nearest Relative without even speaking to that person honestly and openly expressing their views.
I can honestly and openly tell each and every one of you the reason they want rid of me as the Nearest Relative is not because I have abused my daughter but because of my views on the drugs concerned. They think I will influence my daughter to stop taking the drugs or encourage her. Well I am not a doctor so I could not do this. I would not be able to cope and my daughter could die in coming off the level of drugs she is on . She is on the third most dangerous drug Clozapine and all I want is for her to not be held forever on a section that could go on 20 yrs or more as I know some people are stuck in this rotten awful system – not because they are a risk but because there is NOTHING in terms of decent supportive care. I then went on to speak to Mr Asaria about therapeutic communities as this is the answer. I would also like proper assessments done and that is why I have had private tests done which prove the drugs are doing harm and therefore a fresh approach needs to be made as far as nutrition goes. Yes it does work as I appointed private orthomolecular psychiatrist qualified to give both drugs and other therapies. I have never seen my daughter look so happy. I am thrilled that HRH Prince Charles has spoken out. I had written to him personally about my daughter’s shocking care at the Bethlem – it means so much that he has spoken out on this subject and he is quite correct. I saw a marked improvement – just to listen to my daughter saying how happy she was to not be dismissed. That says it all but then I was banned from the scheme when I spotted an email asking her social worker to be reduced off the drugs – none of my influence whatsoever in this and I demanded a copy. It was then difficult to administer the private prescription from the private orthomolecular doctor I appointed myself and it was for this reason I had to give up my police training as this clashed with the course I was on.
I congratulate Mr Asaria for listening politely to what I had to say – a mere mother but one who is prepared to speak out and fight to get changes implemented. I am not a professional but am in touch with some who have given me wonderful advice and led me to research into the drugs and what is available in terms of care and there is certainly a void in care. People kept on a section for years on end cannot manage in the community but why on earth should they be confined to a hospital when there should be choice and alternatives. These patients are written off as nothing when I do not believe that anyone should be written off. I believe that there could be more done to provide a choice in care not based on research but based on a patient’s wishes as at the end of the day everyone is individual and not everyone gets on with the drugs. Not everyone responds well to the shocking care on acute wards. Some patients like my daughter need peace and quiet to get well and rebuilt their confidence with peer support rather than strict domineering control of professionals and I am not for one minute saying all professionals are bad but I want patients included and to be made to feel worthwhile and not just written off and made to feel like nothing as I do as the mother they want rid of.
I hope that Mr Asaria does not just discount my comments and it leads to a bitter battle in court – whilst this is a secret court which I disagree with I think the public should know what is going on after all it is provided by public money. I just want things to be fair from now on that is all.