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.

O

sbev2013:

Agree with this.

Originally posted on Mental Health Cop:

I think it’s interesting to comprehend the Mental Health Act 1983 from the point of view of what it’s actually there to do. The short-title of the Act suggests that it is all about mental health and wellbeing. Of course, we know it’s not – the Mental Health Act is of no relevance whatsoever to anyone who is mentally well. From that point of view it should have been called the Mental Illness Act 1983. Perhaps it should have been the Mental Disorder Act 1983 – after all, in its own long title it is described as “An Act to consolidate the law relating to mentally disordered persons”, whatever they are. It brought together all nineteenth and early twentieth century law on lunacy and vagrancy, replacing that awful terminology with stuff that hasn’t survived contact with the real world either.

I wonder, however, whether it should have been…

View original 1,164 more words

Today Elizabeth and I have been to a local Zumba class.  I am very happy that I have found this class just up the road from where I live, couldn’t be more convenient.  On the past two occasions I have had trouble persuading Elizabeth to come but I am trying to get her to socialise with other people and I could not have met a nicer crowd.  For the first time Elizabeth joined in the class and enjoyed it.  I deliberately did not give her the drugs first as these lead to her being totally incapable of doing anything but lying down and cause dizziness and many other terrible symptoms.  I am going to write to Novartis to complain about this chemical that is considered to be a wonder drug but it is far from this.  Every single pharmaceutical company needs to be doing something to help those who become injured as a result of their treatment or fail to benefit from it – but they are not interested when it comes to an individual. I intend to write to them all in due course and I will tell you how I get on as I feel these companies who make a huge profit out of the weak and vulnerable should be doing a heck of a lot more to help.  Elizabeth has gained weight on their dreadful chemicals and her face is full of scars – her body is full of scars and I want these scars rectified and I think that each and every one of these drugs companies should be helping Elizabeth and others. especially when their drugs do MORE HARM THAN GOOD.

So we had a great time at the Zumba class and later went for a coffee with other members of the class who spoke of pleasant topics like holidays and entertainment and this made a nice change to listen to others and their experience of their holidays.  The class is more than just a zumba class but one where people care about one another and do charity fundraising events and I wish I had found this sooner in my local area as I thought there was nothing.

Later today I went to buy food and nice things as a local church were holding a dinner for those who are homeless and I would like to say had more manners than most.  Elizabeth who once had a job and was doing well for herself helped served some of the people there and so did I.  The first thing I noticed was how appreciative people were for the efforts of those who really care, who are not funded to do this kind of thing but wish to do something however small, because they care.  It is a pity the Government does not care as I saw nothing but good manners and decent people that did not deserve to be on the streets. I would like something done about this problem, especially in light of how much money the Government waste and I can certainly prove this, and the fact that they award themselves a pay rise!  Well how about doing something for the people I have seen today and other such as Elizabeth who have been written off like rubbish.  I would like to feature this in detail in due course and I have not forgotten to feature the shocking effects of when Elizabeth was first put on Clozapine at the Bethlem.  I am going to look this out tomorrow to share with you all.

I cannot wait to share the results from Holland where the world’s leading expert is doing tests not available in the UK which could benefit everyone but first of all, I need to see these results but it could save money to the NHS who waste so much by giving the wrong drug treatment when they shoud be giving the correct assessments and checking these thoroughly.  If this leads to recommendations by a world leading expert of lower dosage of chemicals then I will be broadcasting this good news to everyone as this is something that the Government needs to take notice of.  Nothing is being done properly in the UK and I can prove how much money is being wasted on private sector care which is no better as it is all about huge dosage of drugs just like the NHS but I have had to turn to Holland for help.    The world can learn from top experts in Holland hopefully how to do proper tests so that patients are not on massive dosage of mind altering drugs and told to take them for the rest of their lives.  I have had to go to huge lengths to have these done and I want to see them available for everyone – the mere fact that Elizabeth can see that I as a mother listen to her is hope and that everyone can have hope and that mothers need to look much further than what a doctor has to say.  I have had to turn to the Professors and world leading experts for help as nothing is being done properly in the UK.

It was good for Elizabeth not only to join in the class today for Zumba but to come and help at the Homeless supper and I want everyone to stop and think that no one deserves to be abandoned on the streets and no one should just go ahead and judge these people as being worthless or having themselves to blame.  Everyone has a unique story and no one should be dismissed like rubbish.

Last week Elizabeth was away with the rest of the family by the coast which was nice for her whilst I, on the other hand was faced with travelling on crowded stifling hot trains and buses, due to tube strike action.    It should have been a peaceful week but it was not but never mind I am not going to let a strike prevent me from getting to places.   Not having Elizabeth last week was a  bit of a break for me.    I have to remind, encourage her and prompt her to do things.   Elizabeth gets very tired on the drug Clozapine which affects her motivation and at times thinking ability.  Sometimes Elizabeth will think of things herself,  there are good days and bad; it is not surprising as she has been  in hospital institutions and care for c 3 years.   I and I am lucky to have her out from the care system as once in it, a patient can easily become trapped and under never ending control and restrictions and this is especially easy for the team to do when sent a long distance from home.  When someone is drugged up enormously, this obviously affects their ability to speak up and request things and weakens them to the point they cannot face going through meetings or tribunals.  Solicitors do not act fairly if a patient is unable to contact them and deal with them effectively from what I have seen.  Patients can remain stuck in hospital or care institutions for many years/ a life sentence in some cases.   This affects their relatives/parents who become distressed at seeing their sons/daughters left under un-therapeutic establishments that  enforce unnecessarily in some cases such rigid control – all this allowed to go on in a system that disregards human rights and this is not being publicised in the press.  Luckily when I was regarded as Nearest Relative I had plenty of energy to challenge what I see is very wrong and was able overturn the section 3 which was entirely unnecessary and this can now be seen as  evidence to anyone who has seen/met Elizabeth since she decided to come home from the care home and this has been over a year now and now I would like to see other similar cases reviewed as I have met some very decent parents also affected.   I realise it will take a long while for Elizabeth to become fully independent as I would like to see but I do not see that this is impossible and neither is it impossible for others given the right kind of support to their families.   Elizabeth has lost confidence and fears going out alone but whilst she is no longer a prisoner to the system she is a prisoner of her mind as she was in a locked rehab institution sent miles away to Wales.  There should be more therapy available to such cases.   So in order to rectify the situation, I try to take her out as much as possible at the weekends and take her to my various groups and conferences run by ISPS which is a good way of encouraging Elizabeth to participate in workshops etc and speak up and join in discussions and mix in with very good and decent professionals/service users who are getting on well in their lives.   A good example of this is Rai Waddingham who is not on mind altering chemicals and has succeeded in freeing herself from this kind of “treatment”.   Of course going out at weekends means that it is not easy to get on with day to day chores at home but we somehow manage to get by and we have managed over the past year without any support whatsoever.  It was a year ago now when we were taken to court by professionals whose aim was to return Elizabeth to the care home hundreds of miles away from home, restrict visiting rights and put her on a CTO.  It was even being discussed in the files of placing her in  hospital where security was tight – more like a secure prison, which would have destroyed Elizabeth. I know of people being placed in such establishments because they are vulnerable, not a risk to society and for convenience as they cannot manage in the community.  The team’s main concern was compliance with the drug Clozapine from what I can see in the files and despite her request, no one in the team will consider reducing this chemical.  We do not even know the name of the consultant psychiatrist and the problem is that Elizabeth and my carers do not wish to see social services first and not once has the new consultant psychiatrist contacted us.  How can you trust such professionals who have spent a fortune on court instead of listening to Elizabeth’s wishes and also written some very nasty things in the files.    They see that this “wonder” drug should be taken for the rest of her life regardless of any physical health problems and I suppose this is why professionals like to keep someone locked away as if anything is wrong things can easily be covered up.  This drug is far from a “wonder drug” –  I can easily confirm this fact.   I wish to add to my previous blog about this when Elizabeth was at the Bethlem as there is something very interesting I wish to include but I need to look for this when I have time.  Anyway, parents and relatives are pushed aside and access to the patient can become impossible because of rigid security controls and a way of doing this is to ban you from visiting and take phones away.  Another way is by way of coercion to try and turn the patient against you.    When I look back on the contents of the files and previous court papers I see that the team do not consider me to be a fit mother because I have strong views against these drugs and they think that I am a risk to her in that I will just stop her on these drugs but it was the team who did this – they were the ones who made it impossible to get the drug Clozapine which was deprived locally in a bid to force return her back to the care home.    I have already documented all of this but a good way of ensuring that team members listen and force them to provide the chemical in order to avoid serious withdrawal effects and injury is to take individual court action against certain members of the team and then they will listen to you.  Non medical members of staff would not be understand how the drugs work or would think about what harm the drugs are doing to Elizabeth and they would therefore not understand the risks but I as a mother know full well that you cannot just come off these awful drugs as much as I would like this to be possible.  There is no help or support or facility when it comes to prescribed drugs and especially when you have been given a label and such a label, right of wrong, means drugs and it is convenient for a team to disregard other health issues and prescribe them for life when in actual fact someone could be completely misdiagnosed.   So risk to self and others does not take into account the risk to the patient and I therefore do not agree with the current system that allows this fact to be ignored.    A hospital/care environment does not suit everyone and neither does being labelled or taking the drugs and, far from making someone independent, it can have the opposite effect.  In some cases a patient can go downhill and just give up.  When Elizabeth was labelled (and she has plenty of different labels) this is what happened – the labelling is only to ensure benefit entitlement/access to the drug treatment that go with those labels.  However one of the labels is PTSD and I have looked this up to find Clozapine is not recommended for this condition.   Elizabeth’s lack of thinking ability is seen to be a symptom of illness rather than the effects of these extremely powerful drugs that make control of patients easy to a team of professionals.   The more drugs the better as I see from the files to my horror maximum amounts concomitantly prescribed were given to Elizabeth when admitted to hospital – these are supposed to be caring professionals but I can prove otherwise by the contents of the files.   Anyway, as Elizabeth has more than one diagnosis I have asked for assessments to be carried out by experts in the field of PTSD and Aspergers which are also diagnoses mentioned in the files which the team conveniently refuse to acknowledge yet they were given by other experienced professionals.     One assessment was given by an expert of their choice – a Neurologist based at Queen Square who saw Elizabeth for just a short visit yet comes to an agreement with the team on one diagnosis but how on earth can you count this as a valid assessment when this same professional who I am finding it very difficult not to name suggests optimising the drugs and Elizabeth was already on a high dosage.   How can you respect such an assessment and I believe every single diagnosis needs to be thoroughly assessed which I have requested from the GP.   If an assessment costs a mere £600 for instance as I told the GP, it should be borne in mind that £60000 a year is being saved by not providing anything in the way of care to Elizabeth.  These assessments are a small price to pay in my opinion and Elizabeth has the right to have them as it is like a lifetime of imprisonment of taking drugs that are ineffective when someone is treatment resistant or where diagnosis is in question.   I cannot accept any labels without scientific proof and need to see such proof of the diagnosis to ensure that the treatment is in accordance with the BNF and NICE Guidelines.

Anyway, this weekend I took Elizabeth to the Chilfest and we saw a variety of very good acts including Shakatak,  Odessey, Jocelyn Brown and Shalamar.   I took with me a close school friend and Elizabeth’s sister joined us later.  This was held in Tring and it was fabulous weather for this event.  Really enjoyed it.

Saturday, I was a bit concerned how I would encourage Elizabeth to get up in the morning after a late night  as I had booked for the ISPS
Conference called Walking Alongside.  After taking this powerful drug Clozapine Elizabeth has to lie down.   It causes dizziness, double vision, anxiety –  this is the effect of Clozapine and also she is very tired on this drug and it has caused huge weight gain   As always this was a very good event hosted by Rai Waddingham who is an example of someone completely off the drugs who now feels fit and well and I see her as an inspiration for Elizabeth and others.   Anyway there were various speakers, service users, carers and professionals taking part.   We were put into groups and later changed around slightly so we could take part in discussions with others I the room.  There was a very good attendance and quite a few consultant psychiatrists and other professionals.    On my table we had two consultant psychiatrists who had travelled from a very long distance away and I was very pleased to see that there were such professionals who cared about seeing changes to the current system and looked far beyond just check lists for instance.   Whilst we have had the very worst experience there were many interesting points of view to consider and looking beyond is not just a case of the labels given to patients or your perception of how someone should be but noting that is different.  It is easy to think all professionals are bad when you have had a bad experience yourself but, talking to those who attended this event made me realise that it would be possible to walk alongside – at least in some cases.  However I am afraid that this would only apply to the professionals who I met at this conference and spoke to as it is all about trust, openness, honesty and sharing whichs is why I am in favour of open diaglogue.

In order to walk alongside, you need to be able to trust professionals but I would need something in writing from the professionals in my local area worded to the effect that they would stop taking me to court time after time again before I could trust them especially having read the files.  If the court case had succeeded, I would have lost my daughter to the system and my family would have been destroyed. I am glad Elizabeth told me what she did and I put two and two together to realise what was being done behind our backs.  In contrast, I had faith in those professionals I met at the ISPS conference who spoke in a very honest way and I was impressed to hear that they looked far beyond just  medicating patients and my view of consultant psychiatrists in the main is that these are doctors who drug patients on enormous dosage of mind altering chemicals and that is their main form of treatment and so it was good for me to meet and Elizabeth to meet some professionals who had much greater insight and I would not have had trouble in “walking alongside” them.  I think the answer is definitely such courses provided by ISPS where professionals, service users and carers come together  and listen to one another and at this event I did not experience the feeling of “them and us” which made a pleasant change.

It is good for Elizabeth to attend such an event and to be encouraged to take part in discussions and activities with professionals and those who value the experience of someone with lived in experience and how they feel and good to see professionals who are willing to listen as this is a major problem with many of them.

Below are the details of this event we attended.

Walking Alongside?:

Navigating the tensions and opportunities for collaboration between lived and professional experience of psychosis

Saturday, July 11th 2015 @ Amnesty International, 17-25 New Inn Yard, London, EC2A 3EA

A conference for people with lived experience of psychosis, family, friends, therapists, nurses, psychiatrists, psychologists, social workers, OTs, the voluntary sector and other supporters.

Contributors:

A mix of people with lived experience of psychosis, ‘carers’ and professionals who will speak from their own experience of these issues to stimulate frank, respectful and open discussion.

This event provides a safe and inclusive space where we can respectfully hear from many different voices.  Rather than filling the air with information, we want to create an opportunity for meaningful discussion stimulated by the input of people with varying types of experience.  We want to openly explore a) what gets in the way of walking alongside one another and b) how can we address this?

Issues explored will include: language; power; risk; participation; culture; beliefs; rights; respect.

Theme 1: ‘Us & Them’, or ‘Only Us

Theme 2: ‘Whose Journey Is It? – Care, Ownership & Control’

Theme 3: ‘How Can We Walk Alongside? – Examples from Real Life, Big & Small’

I will end my blog today by posting a link regarding the CEP (Council for Evidence Based Psychiatry) and I am so pleased to read this – at last recognition is given but when I hear comments like “slowly but surely – things take time to put in place – you cannot expect things to happen overnight”   I would say rubbish as I have read in the files on two occasions how action has been put in place immediately –  this is done when there is an emergency or when something goes wrong.  So in my view this is an emergency that the Government needs to address and to  act upon immediately and as a matter of urgency as some young people currently in the UK are being wrongly incarcerated long term in un-therapeutic institutions worse than any prison, where they are not allowed phones or family leave/contact – in these institutions patients are drugged enormously and written off like rubbish and I would like the Government to act on such cases immediately as a matter of urgency.   I would accuse the Government of breach of human rights as when a patient has not done anything seriously wrong why should they be locked away for so many years and deprived of leave and just left to go downhill.  How many such cases are there and how much is this costing the taxpayer?   Such cases are not publicised in the press and parents I am in touch with would be happy to give publicity if something could be done about their situation.   Elizabeth was written off like rubbish from what I can see from the files and now  look at her attending conferences etc –  this shows that anything is possible and there are some families who need support which would work out much cheaper than the cost of long term hospitalisation.    How much is a weekly stay at a hospital as opposed to raising carers allowance or giving direct payments to be spent on activities of the patient’s choice? –  I think direct payments is an excellent idea which could provide assistance to get Elizabeth out places during the week but I disagree with a social worker’s comments “she is happier with her own kind”  –   I cannot think of anything more stigmatizing coming from a professional  Direct payments would be cheaper than long term hospitalization where a patient comes out of the system disabled.

Here is the link below for the Council of Evidence Based Psychiatry:

CEP APPOINTED AS SECRETARIAT FOR ALL PARTY PARIAMENTARY GROUP FOR PRESCRIBED DRUG DEPENDENCE

http://t.co/s5K2bxFlq3

I have never come across a complaint that has been satisfactorily investigated as what a team does when faced with complaints is to investigate themselves.

When a complaint is not resolved satisfactorily you can go to the next stage ie., The relevant Ombudsman. They have 40 days to respond to you but have only ever partially upheld my complaint. In the case of records, the ICO (Information Commissioner’s Office) is responsible.  There are also various Professional Bodies for the Professionals, such as HCPC for instance.

Different agencies who are supposed to investigate different areas of complaints.

Take the ICO – If for instance you are deprived information requested in the files, ICO is meant to deal with this but also if you receive something that you should not have received. This is the Organisation to turn to, or rather should be ………….. An extract by way of example of such response you could expect to receive is as follows:

Based on the information provided it is our view that the Trust is unlikely to have complied with the requirements of the Data Protection Act 1998 (DPA) in this case. The Records Manager will meet with the records staff to remind them of the importance of cross checking data and will complete additional training if this has not already been undertaken. In view of the above we do not consider formal action necessary in this case. However we will keep the concerns raised on file. This will help us over time to build up a picture of the Trust’s information practices. I note you would like to know whether note relating to another individual have now been provided – unfortunately the DPA does not place any obligation upon the Trust to confirm this to you so we are unable to provide any further assistance.   Thank you for bringing this matter to our attention.

(“The ICO’s mission is to uphold information rights in the public interest, promoting openness by public bodies and data privacy for individuals.” )

A case can be split into two despite being similarly related and in the case of additional matters of a serious nature, you can find this is dealt with by yet another case officer.    Elizabeth has had so many decent people willing to get involved in helping her when she decided to come home, this is why they should be protected if there is seen to be cause to act this way. Safeguarding can be a two way matter and I am safeguarding all of my carers.

Some things are not a mistake but deliberate.   For example it was deliberate to deprive the drugs, deliberate in terms of the fact that titration would have to be done by scratch and access given to care teams in respect of this and it is stated in the files Elizabeth was without the drug Clozapine for 48 hrs but in fact it was only 26 so it was unnecessary to titrate from scratch.

It is particularly worrying solicitors can turn a blind eye when it suits them.   Care staff can also turn a blind eye when something serious happens under their care.

A culture of bullying is evident and as regards the files they are inaccurate and untrue, spiteful remarks written so I feel I should make necessary corrections especially in terms of family history which I can see is incorrect.

Every little thing is recorded in the files like parrot fashion and this is particularly evident leading up to court.

There are some very personal things written against you – nothing nice and certainly nothing complimentary. A favourite word is “aggressive”, but there is far worse than this.

One of Elizabeth’s diagnoses is Aspergers but no-one has ever thought to refer her to a specialist to check this out. She has another report stating PTSD and, considering what happened to her whilst under care, this seems accurate however I am now wishing for Elizabeth to see specialists in the field of PTSD and Aspergers. If some experts have based their reports on these diagnoses then I feel it is only right that Elizabeth has these properly checked out by specialists as I would hate to think of my daughter with a label that is now under considerable doubt ie Schizophrenia and drugged with Clozapine for the rest of her life.   Elizabeth continues to get on with everyone around her and I have had no problems with her since coming home.   I can see from the files how specialists can vary in their ideas as to Elizabeth’s condition.   The latest Neurologist calls me a good mother but I am not the only mother who will research things thoroughly, looking up the chemicals prescribed and conditions and I have acquired an extensive selection of very good books to educate myself on the matter.

There is mention of Elizabeth’s referral to the Bethlem and I would like to comment on that as Elizabeth said she was extremely ill at one point – shrouded in secrecy in this hospital where it is all about Clozapine, no one would have known but I found out and now can read some shocking things such as:

I will add to this in due course.

It is not right to state in the files she had a drug free period. I can see she was put on maximum amount of Olanzapine.   What do they expect – as Dr Ann Blake Tracy states any change in medication can cause someone to feel unstable and I think anyone in the world would feel that way if placed in an institution such as this.   They say the drug free period failed but what led to her being sectioned was when they mixed the drugs together. Yet another mistake I note when Elizabeth was moved from Cambian after I as Nearest Relative overturned the Section 3 and quite rightly so.   Like I say Elizabeth should never ever have been placed on a Section 3 in the first place.    At home, Elizabeth is doing her washing, ironing, cooking and cleaning but does have to be prompted. Going out is another matter as Elizabeth is petrified in going out.   Thanks to reading books such as Emotional Health by Dr Bob Johnson I have a very good understanding now.

It is stated that Elizabeth was transferred to a home in Wales – Oh no she was not! Elizabeth was transferred to a care home hundreds of miles away which was not her first choice.   How on earth can they call it “Clozapine therapy”.   This is ridiculous as on this mind altering chemical Elizabeth has become disabled to the extent she cannot walk without feeling dizzy, suffers double vision and after every meal has to go out and it is as though she is suffering from bulimia but it looks as though she cannot swallow that well.   This drug is no good but under the local area we do not even know the name of the psychiatrist.

It is a load of rubbish written in this report by the Associate Specialist Psychiatrist Dr A – the reason being that it was 26 hrs without the Clozapine, not 48 as mentioned – so it was entirely unnecessary to ttitrate from scratch. It was done deliberately so that the team had to have access into my home and were asking intrusive questions for the purpose of digging up any dirt possible for court purposes.   “report everything that mother says – this is a special case”

Thank God Elizabeth got through all of that and I also bought a book all about the law especially on capacity.

Now Elizabeth is talking freely, she feels comfortable being amongst my friends, some of whom have themselves been under the care system and have great understanding.

This week Elizabeth is away on holiday with the rest of the family.   If the team had succeeded in what they wanted to do, she would have restricted leave and they were even considering a unit where Elizabeth would have been desperately unhappy and it sounds worse than prison.   I wonder how much such a unit would cost and Elizabeth would just have gone downhill in there and it would have been difficult to get her out of the system.  Many become lost in the system and end up as prisoners in such institutions where enormous quantities of drugs are given to them.  I would like something done about this terrible situation as I am in touch with mothers who care and would like to see their sons/daughters released as they are not a danger to others as the public would think – terrible that such young people are just left to go downhill and highly drugged to the point they give up. If there was open dialogue and direct payments given to some of these families to provide more integrated care into the community, it would be a lot cheaper than these un-therapeutic institutions where many patients are left to go downhill.

Elizabeth is now telling me about her time in hospital and how she was treated.   Elizabeth has joined in well with my courses and conferences. Elizabeth is not well in terms of her physical health and feels dizzy, as though she is about to fall.   I put this down to the drug Clozapine and where does it say this drug should be given for a condition such as PTSD?

Every night Elizabeth and I go for walks.   I have seen a meditation class once a week where I will take her. We have joined a local Zumba class together.   Elizabeth has a trainer that comes to the house and takes her out.   It is better now she is at home as at the care home sometimes she would be sleeping at midday and be in bed at 6 pm.

I can hardly wait to tell you all the latest news but first of all want to see the results.

On Friday I am very excited at going to the Chilfest and I am taking one of my former school friends.

Not having Elizabeth this week has enabled me to write my blog as there is little time to do this now, and I wish I had time to reply to all the wonderful supporters I have right now.

I will continue to keep you all informed with all my latest news and the wonderful developments – Elizabeth will be home midday Friday just in time to go to The Chilfest.   Hope the weather is good for this event.

The Natural Health Centre featured demonstrations of the Bowen Therapy tonight which was very interesting.

The Bowen Technique is a remedial, hands-on therapy that is applied using very gentle pressure. The practitioner uses thumbs and fingers on precise points of the body to perform Bowen’s unique sets of rolling-type moves which stimulate the muscles and soft tissue of the body. There is no manipulation or adjustment of hard tissue and no force is used. The experience of a treatment is gentle, subtle and relaxing. It is believed that the Bowen Technique prompts the body to reset, repair and balance itself and clients report the experience of pain relief, improvement of function and recovery of energy.

What Does It Treat?

What responds well to the Bowen Technique? In short, almost everything can respond well to Bowen treatment and this is why:

The Bowen Technique is a non-intrusive complementary hands-on therapy. The technique is based on the theory that gentle moves over precise points of the body can prompt the body’s innate ability to relieve pain, restriction and imbalance without the need for deep, manipulative or forceful treatment. Bowen practitioners work holistically with their clients and expect to work alongside allopathic health professionals to support optimum health for their clients. For example, one of the most common complaints for which people seek Bowen treatment is back pain.

The average number of treatments people have is three to four. There are always exceptions to any rule, and some people will need further or even on-going treatment.

 

Painful and restricted shoulders are also a particular favourite as are neck pain, respiratory conditions and headache patterns. Bowen is being widely used for sports injuries as well, with rugby clubs and premiership football clubs showing interest. Not only do sportsmen report fewer injuries when treated regularly but they also notice enhanced performance.

The Bowen Technique was developed in the 1950s by Australian Tom Bowen. Training courses in Mr Bowen’s technique were first offered in the late 1980s in Australia and came to the UK in 1993.

I am delighted I have found something good in the local area but unfortunately Elizabeth was not feeling well enough to come tonight.    Next time it will be best if she takes the Clozapine later as, after taking this, she has to lie down and never feels well.   Pity, as Elizabeth has missed out on a good evening but I intend to book her such treatment which in my opinion should be available on the NHS as a matter of choice and would do more good than harm, unlike the current treatment of enormous amounts of drugs which have not worked and are ruining her physical health.  What a waste of money that these chemicals are given to someone “treatment resistant” and with a diagnosis of PTSD when it is NOT recommended in NICE Guidelines.    If a diagnosis is in doubt like it is in Elizabeth’s case, no one in this area seems to care less and just wants to carry on drugging and drugging regardless and luckily I have looked into matters thoroughly and I now want thorough assessments done particularly when I can see what harm is being done and Doctors are supposed to do no harm.   I can prove that they are in fact doing harm.

Another good thing for Elizabeth would be the meditation classes run by a brilliant local Doctor which are in the evening at a time when I can bring her.
Elizabeth however is already worried about whether there are stairs as she is fearful of heights.  I can see these drugs are not doing her the slightest bit of good and have been told she is on too high a dosage but no one seems to care apart from the GP to be fair who at least is trying to help.     I have had once again had to delay the Neurologist appointment as Elizabeth would not go under the scanner.   Now I will probably be waiting months and months for an appointment for her to go under a bigger scannerin a hospital further away as another fear of Elizabeth is claustrophobia.

I am so delighted with the Natural Health Centre and thank God there are a few doctors who care about physical health and I have not come across many in my local area.  Anyway,  I am thinking of joining this excellent centre as I think it could benefit Elizabeth.

I see that the next meeting will feature Chakra Psychology – something I have not heard of before-  I am very interested in anything holistic and like the sound of this as well as the Bowen Technique –  (Naturopathy – Helping your body to heal itself)   http://www.chakrapsycology.co.uk – well this makes a change from the treatment of massive quantities of mind altering chemicals that Elizabeth has had under both NHS in this area and private sector care

On Saturdays we have now joined a new class doing Zumba.  I am keen to get Elizabeth out as much as possible to the point she can relax and enjoy herself  –  since coming home she refuses to go out alone despite having a key and knowing her way around.   She feels dizzy on this awful drug and is afraid of falling and can suffer panic attacks whilst out and that is because she has been incarcerated in “care” establishments where she as not got out enough.  Thankfully she is home now and I am doing my best along with my carers.  As regards the Zumba class, the people were so friendly and although Elizabeth did not feel up to joining in, towards the end of the session, she was starting to relax and get used to the people,   This is better than joining the gyms as the times of the classes were not good, could not make proper use of the facilities and this class is at a better time.   It is a very friendly class and held in a local social club where they have plenty going on and that will be good in rebuilding confidence.

As always I have been extremely busy over the weekend.

I attended the book launch of Bonnie Burstow’s wonderful new book called “Psychiatry and the Business of Madness”  – I did not expect to be beckoned to speak myself at this event but in the end could not resist!  Actually that is far from true.  Writing is one thing but speaking in front of people is another and I had nothing prepared so I just focussed on as much as possible but I was happy not to be in the limelight for very long.  I think I spoke about the amount of drugs given to Elizabeth and how they did not work and also about the ordeal we have been through with Court – it was a shame I did not have Elizabeth present on this occasion but one of my carers was with her that evening .

On Saturday I had a wonderful time with former school friends, one of whom has moved out away from my local area into a more rural location and we saw a show at the local theatre and walked from her house to the theatre and country town.   We are planning another day out very soon and a river trip to a nearby town.  Elizabeth has known my friends since she was very young as we all used to meet up regularly and go down to the coast – a whole crowd of us but with everything that has gone wrong –  I could not take part much in social events but now Elizabeth is back it is time to resume all of this and good to encourage her to get out and meet people and going out with a crowd is great fun.   We have set aside two weekends in the hope that the weather is fine.

We have appointments coming up to see the Neurologist but I am not sure whether to yet again cancel this as Elizabeth flatly refused to go under the scanner and now I need to take her to a hospital where they have a larger scanner.  In fact I must phone the GP this week.  There is more than one thing I need to discuss –  this appointment for one and also the referrals to the leading experts for the other diagnoses mentioned in the files.   If someone has more than one diagnosis it makes sense to me that each and every single diagnosis is thoroughly checked out by leading experts who specialise  in these fields and I have looked into this thoroughly and have suggested that Elizabeth is referred to one of the leading experts in PTSD as there is a strong probability Elizabeth has this diagnosis and nothing should be ruled out.   There must be no doubts about her diagnosis in my opinion otherwise the treatment may be doing more harm than good and this, in turn, is a complete waste of money.  It is cheaper in the long run to have a proper assessment done rather than just stick with one diagnosis just for the sake of convenience.  I am even more sceptical now since Elizabeth is home and feel her current diagnosis is completely wrong and as she is in the right environment (home) I have not witnessed any “symptoms” in over a year  relating to the diagnosis that the team think she has – what about the other two diagnoses made by two other highly qualified professionals?  These need further thorough investigations in my opinion and who better to do them than the leading experts who specialise in them.

I have had to contact world leading experts in order to get accurate scientifically backed assessments not even available in the UK.  I am delighted that hopefully this will lead to accurate treatment bearing in mind decline in physical health conditions. I do not wish to see anything more done on a trial and error basis and can only accept a diagnosis with evidence.    I am not only waiting to hear of the date of an appointments for all the assessments but also I am waiting to hear from various  Professionals who are looking into certain other matters for me right now.

I have ordered tickets for the conference in September I saw advertised on the C.E.P. website and will be bringing Elizabeth to this.   I am looking forward to meeting the Professionals who wish to see positive change,  there is a fantastic line-up of wonderful professionals speaking at this event to be held at Roehampton University.       http://cepuk.org/moreharmthangood/    –   all consultant psychiatrists should be listening to these experts and I would like to see this event widely publicised and this Government needs to listen to these professionals as myself and all the other mothers/parents are not happy with the treatment of maximum drugs.

There is also another event I would like to go run by ISPS:

Walking Alongside?

Navigating the tensions and opportunities for collaboration between lived and professional experience of psychosis.

10.00 – 4.30pm, Saturday 11 July 2015 @ Amnesty International,17-25 New Inn Yard, London, EC2A 3EA

Elizabeth will be going away on holiday shortly with the rest of the family and I have tickets for the Chilfest which I am looking forward to.

As regards holidays myself, I would not mind going to Ireland on holiday this year and am not planning to go away until later in the year.  I want to see how Elizabeth is with flying –   somewhere not too far away would be good at this stage as it has only been just over a year since Elizabeth has come home from the care home.

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