Tonight we have had a great time at neighbour’s party. It was a fancy dress party – Elizabeth went as the Dalmation, her sister as Dorothy and myself as Cruella De Ville. Many others also thought of this too so there were many Dalmations and more than one Cruella De Ville at the party. It was good to meet neighbours I had not met and spoken to before and good to be able to take Elizabeth to a happy occasion like this. On the same day as the party, organisers of our new Zumba class went to the coast for the day – the events organised by the people there are very good and the people very nice who do a lot for charity and it is more of a social club. Again this is a good opportunity for Elizabeth socialise with decent people. The other group who have been very good and supportive since Elizabeth has come home from the care home have been Speak Out Against Psychiatry but I am conscious that this plus the party would have been too much for Elizabeth who gets tired and cannot cope with stress and rushing about trying to fit too much in for one day could be stressful for her. Anyway I telephoned one of the members of this group to keep them all informed of everything I am currently doing. Some of the people there have stepped in to help me when Elizabeth came home from the care home and I advised the group of my recent “safeguarding”. Yes – I have had to do some safeguarding myself as there is something in the files that is disturbing and the particular file has so far been refused to me, the contents of which will not just be of interest to Elizabeth and myself but to my carers. Anyway the files contain many things that are far from true and describe me as something worse than the character I went as today for the party! There are so many mistakes it could take a long time to correct them but the trouble is I am so busy it is finding the time to go through everything properly but this is at the top of my Agenda when I get a chance to do so. I try to take Elizabeth out with me as much as possible get her used to socialising with others as this is confidence building. Before the party we went to a neighbouring borough for lunch and did some shopping. Going back to Friday we had a visit from someone we met through one of the meetings held by the Natural Health Group locally. I was impressed the wonderful collection of videos that I viewed – so impressed that I may not only ask to feature some of these but to see if this person can help in improving my website so that it can go to even further depths, featuring not only abuse going on in psychiatry but other health related matters that could interest many more people. One of my favourite videos was about Prozac and the FDA which I would very much like to feature.
So tomorrow will be a quiet day for us and I will try my best to get Elizabeth to do household chores which are essential for her to be independent one day. Far from coming out of the system equipped to look after herself, she has gone downhill and become dependent on others to an extent however I have seen signs of improvement since coming home and she is making great effort to do things and sometimes thinks of things herself without being told. It does not help being on a high amount of Clozapine and not one person from the team has contacted us about a review of the current dosage. This drug not only takes away thinking ability that the team put down to “illness” but it has made Elizabeth disabled as she feels dizzy, she feels out of breath and it causes anxiety but I do not dish out tablets like the hospitals such as Lorazepam which is highly addictive. It is all wrong what is going on and it is about time proper monitoring was done as regards treatment of all patients under the mental health. In an acute hospital where the main treatment is high levels of drugs to someone suffering psychosis, this kind of treatment stretches far beyond short term and to the point where someone becomes addicted and you are not properly informed of this. This treatment leads to ongoing disabling and dependency as well as serious physical health problems if given long term. There are more and more debates about this and we are going to one in September run by the CEP – Council for Evidence Based Psychiatry and I wish something was done for people like my daughter but instead I am having to pay privately for certain tests. Anyway, I am going to centre my campaign on those patients incarcerated long term with their human rights stripped and the poor treatment given to them at huge cost to the public. I am lucky to have got Elizabeth out of the care system as she was being considered for such a place that I can only describe as worse than prison. Since coming home she continues to improve but her life has been ruined by these drugs which have been pushed at her and recommended by Doctors at high levels who do not consider physical health at all. I would like to highlight the problem in the UK.where patients are sectioned long term for convenience as they simply cannot manage in the community and need more one to one care. A label can open the door for benefits but not everyone wishes to be labelled and besides, how accurate are these labels anyway. I would certainly question the label given to Elizabeth by the bulk of the team as I have heard there is no such thing so the public are being misinformed. It will be a long time before Elizabeth fully recovers because of the treatment she has received but unlike the team I am full of hope that this is possible and I would like her to have a normal life and mix with positive people as coming home has undoubtedly benefitted Elizabeth. There are good things in the local area but I certainly could not say this about the mental health care based upon my own experience. I see a lot of money is being wasted and if the drugs are doing no good it is not right that they should be continued and help should be given to patients if they develop physical health problems as a result of these drugs.
This week I have advised my carers of the current situation with regard to my enquiries. I have told them all I will be happy to reveal the outcome regarding allegations and “plans” mentioned in the files. it is detailed that a CTO was being proposed for Elizabeth with restricted leave and there is a statement to the effect “with whom does she want contact” – what does that tell you for a start – well it does nothing to promote trust in professionals who are supposed to help. I see this as being control, not help but there is no need in Elizabeth’s case to do this. I wish to know more about their plans as I wish to reassure all of my carers. I have another ongoing investigation and I am waiting to hear about this as I am not happy with the outcome of the court and we thought there would be another Hearing but everything was concluded and agreed without us being present and I do not believe it to be fair as I could not help but notice how the legal team representing Elizabeth were more concerned about their own expenses and to offer Elizabeth £100 goodwill gesture is an insult so I see it. I needed to take Elizabeth for therapy to get her in the lift up five floors of the Court of Protection building as well as pay for taxis. Elizabeth had only just come home from the care home and was scared of heights, suffering from anxiety and could not at the time travel on public transport. We did not ask to be taken to court but the costs of travelling and the therapy is the very least they could offer. The firm of solicitors who I feel like naming withdrew the £100 offer when I suggested that this should be for the fares. How can this be considered a goodwill gesture. The Ombudsman are currently looking into my complaint where there are serious errors in a report which was prepared for court purposes and I noticed this error straight away and pointed it out and this was just dismissed so I would like this error amended and the solicitors have refused. What are they talking about – more funding! This is ridiculous as this report should be altered free of charge. With all the money being spent on court and legal fees I think everything should be 100% correct and I do not like the way this has been dismissed.
I now wish to help others who are stuck in the system and will be happy to disclose the results relating to what I am currently doing so that consultant psychiatrists of secure units all over the UK will be able to analyse these results and put them into practise so that patients can benefit from less drugs and wrong treatment will be exposed. Doctors are supposed to do no harm and I as a mother can prove that they are in fact doing harm.
I have written to our GP this week as Elizabeth has more than one diagnosis and I am concerned that she is properly assessed by experts in the field of Aspergers and PTSD – the other diagnoses mentioned in the files. If there is any question of diagnosis then this should not be ruled out by members of a team who are not experts in these conditions. I hope there is going to be no problem in getting these assessments done – as I have already had to chase up the GP about this and she is not sure this will be allowed by the NHS due to funding – well I have seen that an assessment is around £5-£600 but I can compare that keeping someone long term incarcerated in hospital costs astronomic amounts and I have the Freedom of Information requested to prove this. Whilst nothing is being provided for Elizabeth a lot of money is being saved locally. I have therefore told the GP that I wish to know the names of anyone involved in commissioning who refuses Elizabeth these assessments. I feel the treatment she has had locally has been degrading and in breach of medical ethics and the law as in the first instance the case was brought about by Elizabeth due to the deprival of the drug Clozapine. I can prove how her life was put at risk. I can prove that this was being done for court purposes and when you deprive a drug like this this can not only lead to relapse but injury and Elizabeth is able to tell me how she felt on the verge of withdrawing from this powerful drug and then Elizabeth was put under pressure to have an immediate capacity assessment and she did not even wish to see her social worker who told me to leave the room so she could see Elizabeth alone. Having bought a wonderful book on capacity that advises social workers I could see from the check lists everything I needed to know and I felt that an assessment should be done fairly and time given to Elizabeth as the titration of Clozapine was about to commence after four days. This was all done deliberately as the team were reporting back every word and making comments behind our backs.
I have marked on my calendar an upcoming event up where I can get up and speak held in my local area and meet those who are supposed to help residents of the local area but in this case they have chosen to avoid doing anything. It will be good to go along to this with Elizabeth and it will be better than writing on my blog to speak in front of other people – I have found that is the best way as if you write a complaint letter it gets copied in with a lot of people and you get nowhere for the most part.
At the last meeting I went to at the Natural Health Centre, I heard that meditation classes were being held and this is something else that could benefit Elizabeth and hopefully I will take her to this as well. Elizabeth does not even have a consultant psychiatrist in the local area – we do not even know the name of this doctor. This doctor has had a year in which to contact Elizabeth to review the drugs being given but Elizabeth has not wanted to see certain other people in the team and who can blame her especially in light of all that has been written in the files behind our backs, some of it extremely nasty. There seem to be others in the team standing in the way of Elizabeth seeing the consultant psychiatrist and the transfer of care has not gone ahead because Elizabeth refused to see the Enablement Team and as this is all to do with social services now that there are some serious allegations none of my carers wish to see them either until we get to hear more and see the missing files. I don’t blame them one bit and now I have had to do a separate access request for this information as my previous request did not cover the care home.
I will end my blog to say that the system itself is responsible for causing stigma. It is all about State control and this is not care and does not take into account trauma and other causes of emotional distress. Some patients have suffered serious abuse or incidents of trauma but this is not being dealt with properly. The drugs given that they call “medication” are no cure for people who have suffered in this way and go on to suffer great injustice by incarceration and they are the victims and there are the powers that profit from all of this who are well above the law. I think it is stigmatising to give someone a label – not every one wants to be labelled and there is no accuracy in these labels – everyone is different and some are happy to take “medication” – some are happy with a label but many are being deceived. The treatment given can ruin lives and some say the drugs are life saving however I personally would disagree and say that they are life threatening and I have proof of this. Last of all I have been told recently by a professional that Elizabeth is lucky to have a diagnosis – this shows how wrong some people think. Just by being amongst her family and close friends – people who really care there have been no signs of any so called symptoms and I am hearing more and more that some members of staff are not caring people and abusive but there is a culture of bullying and denial that this could go on but look at these comments “she would be happier amongst her own kind” – comments made by a previous social worker who has not got a clue in my opinion.