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Agree with this.

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…

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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.

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