Elizabeth is out at the moment with her carer.    If it was not for my carers I don’t know what I’d do. Elizabeth would otherwise be stuck indoors and I would have to review everything in my life, including where I live and would have to even consider moving.

The other day, the telephone rang and Elizabeth went to answer which is something she would normally avoid doing.  When someone asked for her by name she dropped the phone thinking it was social services but it was in fact just a sales call.  Such is the effect caused by a team of professionals who used bullying tactics  at the time when we were due to be taken to Court.   Incidentally we have not been refunded the fares/expenses for the court which I think is really bad after all this time and we can all see the full extent in the files of how team members back one another no matter what and they all stick together.     This experience has had a devastating effect on Elizabeth and my carers are not too happy either at the comments made.  The result is that there is no trust.      It is now over twenty months since Elizabeth has come home and it would just be so nice if some of the people who are helping me right now received some recognition for what they are doing voluntarily and expenses fall on me but no-one cares.     Whilst the local Council wish to increase council tax/make savings by cutting back on services there is no end of money when it comes to taking people to court and all of this is decided as being in the “best interest” by certain professionals who really know little about my family. You certainly cannot go by the files as even past history is incorrect and there are plenty of errors so I can see.   No change in treatment has been suggested by the consultant psychiatrist and from what I can see from the files, the main concern of all the professionals was that Elizabeth complies with the “treatment” of  last resort drug Clozapine.  Clozapine is supposedly a “wonder drug” for Schizophrenia in cases where other chemicals have failed but Elizabeth is also recorded as being “treatment resistant” and this means poor/non- metaboliser but what about all the other diagnoses in the files and my request assessments have been ignored.  I do not have a good word to say for this drug Clozapine or any of the other drugs given.  This means that treatment could be entirely inaccurate and the team are taking the easy solution by ignoring the test results from Holland and   continuing with drugging for life by Clozapine.  No-one in the team will take any kind of responsibililty and if you dare to dispute their decisions regarding treatment you get the kind of treatment I have previously documented.      If other similar cases of wrong diagnosis are disputed these should be fully investigated and this can only be done by proper and thorough assessments like I have obtained in Holland by the world’s leading expert.

Today I had a call from someone as I had written to everyone in my local area such as the Leader of the local Council, the Director of Social Services and the Chief Executive of the MH Trust as well as my local MP who Elizabeth and I went to see not long ago and we asked to be transferred to an area where Dr Rassaque is coordinating Open Dialogue.    We have met some very good professionals by attending conferences organised through ISPS and INTAR.   Unfortunately I heard that Open Dialogue is apparently not being considered in my local area but in other areas I believe such as Nottingham and Liverpool things are moving forward by professionals who do listen and recognise the need for change and I am glad to see that we are not alone in waiting something better, a system of openness and honesty that does work unlike at present.

I have found wonderful care from a team of helpers, close friends and family but when someone has suffered trauma they need specialist help but who can you trust when even the art therapist likes to come up with labels.   Incidentally, I am waiting for these labels to be removed from the files but I have not heard from the CEO about this yet.   I think there needs to be other corrections made to the files and I need to go through them thoroughly and make a note of all of these errors but it is a question of when I can get round to doing this as I am so busy.

Elizabeth is due to undergo a review of benefits soon – I will let you all know how this goes and I have had to ask for my carers to be present at home.    How can someone deal with such matters and attend meetings and deal with appointments etc when they are too afraid to leave the house alone let alone answer the phone and to overcome this and, as Dr Bob Johnson recommended in his report “intensive trauma therapy” should be given. The fact that Dr Johnson’s report has been ignored is the reason Elizabeth has not got better and suffers from Agoraphobia and relies on my carers to take her out places.  As nothing has been provided for my daughter in 22 months I have been trying to find out about what is available myself.   Elizabeth needs help with cooking, washing up, ironing, prompting to do things in general – she is like a prisoner of her own mind. Elizabeth finds it hard to speak to people as she has been imprisoned in coercive environments.   Today, following a recent letter I’ve written, I had a call from someone wishing to investigate my concerns but I said that I can see exactly how complaints are handled and dealt with in my local area and always the answer comes back that they are “satisfied” and even excellent is a word mentioned to describe the care provided.     There is no accountability as noone wishes to admit anything to be wrong or make any necessary changes.

On a brighter note I had a good weekend last weekend and went to China_Life Tea where they had New Year celebrations taking place.  Elizabeth enjoyed this and the buffet and talks on teas.  I have a good selection of teas at home and now have no end of healthy food as I take more notice of the labelling on products.   Even in a health shop you still need to take notice.  Luckily one of my carers is an expert in these matters.

Elizabeth’s Birthday was a week ago and she went to see the rest of the family and they all went out to a vegetarian restaurant in Cambridge.

As regards the future for Elizabeth it is too early to say.   I would naturally like her to do something good with her life and have a job- we do not even have a care plan after all this time yet there is money in the Better Care Fund and now I have read an article in the Evening Standard about this fund but I would dispute the amount as I have seen billions mentioned nationally.    There seems to be a huge discrepancy.

To place someone in care costs £60000 a year and hospitals are even more astronomic.   The result is that Elizabeth is now disabled to the point of not going out like she once did, no longer able to go shopping alone or get on a bus as she once did.  No longer to even walk down the road alone a short distance and I have tried to encourage her.   Elizabeth has become dependant on others sadly and I do not know what any further investigation into my concerns will bring – it is action not words that are needed.   I said today that the whole system needs to be changed  – I believe no-one should be written off and this is where money is being wasted by writing people off and subjecting them to a lifetime of drugging and by keeping vulnerable patients incarcerated in hospitals/care facilities for years and years on end, drugging them to the hilt resulting in disablement.

It is a pity there is nothing better in the UK in terms of facilities and that is why I would like to see Chy_Sawel set up.  The Chy_Sawel Conference is coming up soon and is going to be held at the grounds of Exeter Chiefs – Sandy Park Rugby Club commencing 9.00 am on Friday 13th May – Exeter, Devon.   I shall soon be posting more details regarding this and the Agenda.  Robert Whitaker is speaking amongst other wonderful professionals.    It is natural that parents want the best in terms of humane care ie.,  care that is not all about forced drugging or ECT and proper assessments given with a strong emphasis on nutrition.   A place that gives proper assessments and not all about drugging at extreme levels like current treatment is needed.  It is no wonder beds are overflowing under the current system – it is because the treatment is WRONG!

Today Elizabeth and I have been helping someone who we have known for many years (an elderly lady who is now very disabled and living at home).  She cannot walk, speak and has to write everything down on pieces of paper.  A few weeks ago I bought her a board to write on but she has gone back to writing on pieces of paper again.  Today I met with her social worker as a new agency has just taken over and it would appear no information has been passed between existing and current agencies as far as access to money is concerned so carers have no money to buy milk, bread and essentials and then I get a call that shopping is required.  There must have been previous access to funds prior to this agency taking over as there was never any problems like this.     Because there is no money to buy shopping this had led to a situation where there is no milk, bread and basics in terms of food.   Myself and carers have had to go out and buy food etc more than once.   It was attempted by the social worker today to try and take her to her bank but there was no wheelchair or transport arranged and I had to drive to a neighbouring area to pick up a wheelchair.   She refused to go in the wheelchair and I was handed another shopping list of things that were needed.  After I had done her shopping I took Elizabeth home and had to go back with the shopping and food I had purchased for her.

My thoughts turned to Elizabeth who has had nothing since nineteen months having come home from care but then that is understandable as she has not wanted to speak to the social services team as they have been so nasty behind our backs but today we saw another team of social services who I have previously had good experience with in their support for my father who had Alzheimers. Social Services have now taken control of the matter but it is not a good situation where you are asked to do shopping and there is no means of reimbursement right before Christmas, especially when there is no support for the person you care for (Elizabeth) which means expenditure falls on my shoulders.  What is happening when there is a Better Care Fund.

I think I have been blacklisted.  I always used to hear about all events going on at the local carers centre but now hear nothing and am no longer invited or informed of their parties or events or even receive literature.   They were the first people I turned to when Elizabeth came home from the care home but like many organisations, they rely on funding and I suppose this is why we never hear anything any more from them like we used to.

I cannot really sum up any enthusiasm for Christmas this year and have struggled to plan and look forward to this occasion as I once used to.    Every Christmas I take dinner to the elderly lady and I think that Christmas is a very sad time for so many people, especially those you who are elderly and alone or under mental health care and isolated for instance.  At one time, I had my father who had Alzheimers also to visit and cater for at Christmas.   I shall be thinking of those who are deprived of being with their families (and I know several such cases under MH care)  I would like to feature such cases on my website where young people are being long term incarcerated for many years and some do not get out yet many cases are not cases where patients  are violent and a threat to others.    I remember one year when Elizabeth was brought home a week or so prior to Christmas  Elizabeth was  flanked by two nurses whilst at Cambian like a prisoner.  It took hours to drive from Wales all the way to my home in London and because of bad traffic on the roads she only had about two hours at home before they had to set off back to Wales.  Now I can see that the rest of the family were treated differently and were granted unescorted leave and extra leave compared to me.

I am very happy now that Elizabeth is back home as also when someone is away from the local area there is no support  or having to stay in overnight accommodation and this can mount up. I just wish that something can be done for the other cases so that young people are not deprived of leave with their families at Christmas which I think is a breach of human rights and this is  going on in the UK today not being reported in the press.

“You pay their wages.  But the so-called public servants who run councils, the NHS and police are uniting to keep you in the dark about their greed, incompetence and corruption” A brilliant article by the Daily Mail featured on 10th December.  See below:

http://www.dailymail.co.uk/news/article-3353660/Public-sector-chiefs-unite-attempt-crush-FOIs.html

I can certainly identify with this and yet they say there is no money but when no one bothers to attend any overview and scrutiny meetings then the public will always be kept in the dark.

The first half an hour was held in secret and I was asked to leave.  Such meetings include Church of England Diocese and Catholic Diocese) –  I have just seen “vacancy –  (parent Govenor Representative) –  shall I apply?  and I’m pretty sure I would be turned down like I have been when I applied to NICE and just recently The Royal College of Psychiatry.  One of the most disturbing things mentioned is Point 3:   EXCLUSION OF THE PRESS AND PUBLIC   – I am a taxpayer and a Scrutiny Meeting should be as per the title in my opinion – (open, honest, transparent).      To emphasise further under the heading of EXCLUSION there is a sentence “To consider, if necessary, passing a resolution under Section 100A (4) of the Local Government Act 1972 excluding press and public from the meeting for the item of business listed in Part 2 of the Agenda on the grounds that it will involve the likely disclosure of exempt information as defined in those paragraphs of Part 1 Schedule 12A to the Act (as amended by the Local Government (Access to Information) (Variation) Order 2006), as are listed on the Agenda (Please note there is a restricted Part 2 agenda).   

The main thing I was interested in was the Better Care Fund as, in nineteen months since coming home from the care home, Elizabeth has had nothing provided and now there is someone helping and this person is doing miracles with Elizabeth.  On a new diet of mainly vegetarian/vegan food she is losing weight, she is being taken out places as Elizabeth is so disabled now she cannot go out alone as she is too afraid.  £3.8 billion is allocated to this Fund and there is detailed information as to how this is made up and distributed.

Getting back to the Daily Mail article it says “senior managers from across local government, the police, quangos, hospitals etc. all seized upon the chance to demand a draconian crackdown which could introduce fees for making a request.  Well I have to pay fees for information.  So Jonathan Isaby of the Taxpayer’s Alliance comments “Who do they think they are” and how disgraceful it is to be making the misleading and emotive claim that making information available to the public means less money for looking after the elderly and vulnerable.  I agree with his comments.

In my local area we have coming up soon a Budget Consultation – Have Your Say   “Government cuts and an increase in demand for Council services from a growing population means that difficult decisions will have to be made about the future of many Council services.  This is in addition to £118million savings made since 2010 – efficiencies alone are no longer enough.  We want to hear from you – tell us what’s important to you, your family and community. You will be hearing from me.  I  feel like putting the link up here right now but I am awaiting a response to my letters first.  As I am limited for time I have decided the best way forward  a letter copying in everyone at the same time.  The date the Budget consultation closes is end of January but I have already started to write the most important letter I have ever written and I will keep you informed of the outcomes.   I could go on in depth with my comments on the title of my Blog and Budget Consultation but in short I would state:   The Council is already saving money.  They have saved over £60000 a year + not having to provide a care home and even more money on not having to pay for a CTO when it is not in the slightest bit necessary.   They need to put the bulk of this money on the failing healthcare for mental health patients and the weak/vulnerable/disabled in my opinion but this is not happening.  Instead they are saving a fortune.   In nineteen months nothing but now there are more than one team involved as others have been helping and supporting Elizabeth whilst I work.   I have also been providing a personal trainer but there is no help or support even though they are supposed to provide something.   As I can see thousands have been spent/wasted on taking me to court.  Even more has been spent on private sector care for nearly three years and a hospital in Beckenham.  The bulk of the money goes on over prescribing and wastage on drugs that do not even work.   I have proven through metabolism tests in Holland that Elizabeth cannot metabolise drugs yet they still insist on giving Clozapine at a high dosage rather than reduce them.  The elderly lady I see from time to time has been prescribed lots of drugs she is supposed to take but she is only taking 1 of them as she cannot swallow these enormous pills.  What a waste of money and  I have quite rightly complained to her GP about this unsatisfactory situation.  If £2500+ was spent on court even more money must have been spent on the independent Psychiatrist’s report plus his attendance at my home.  Several more thousand pounds on top of the figure of £2500.  I will definitely be sending my comments to the Leader of the Council very soon.

In my local paper there is an organisation who support the disabled and they apparently held an event recently – wish I knew as I would have attended but basically it is noted that the number of people in the meeting room reflected the level of concern however they should have gone to the Scrutiny meeting in my opinion too.  Concern was voiced over the Council’s cuts and Government Policies.

On a positive note we are seeing huge improvement in Elizabeth now she is on an improved diet.  She is being taken out regularly by someone who has volunteered to help and who I would like rewarded for his huge effort.

Looking forward to Xmas only a couple of weeks away now and it is about the only occasion the family  get together as others are very busy.  We are inviting in neighbours this year.

The weekend was so busy as I went to visit a friend who is an elderly lady and I discovered she had hardly any food so I then to do some shopping  for her.

On Sunday I went to visit another friend who was on a mental health ward but has since been discharged.  I was shocked at the level of security in that hospital.

There is so much to think of this time of year. There are no longer young children in the family it is not the same any more.

Christmas can be stressful but extremely sad for some people.  On Christmas Day I take dinner every year to the elderly lady.  I shall be thinking of those in hospitals, those who have no visitors such as mental health wards as they are restricted and treated more like prisoners.    Elizabeth is very lucky as she has a team of people who voluntarily help me as there is nothing given in the local area.

I have put up two trees in the living room and it is starting to look more festive but I would like to see other parents united with their sons/daughters who are on stuck on MH wards and denied the opportunity to spend time with their families and I know of several. cases where human rights are seriously being breached.

I have joined the Human Rights Group Liberty and I hope to bring to everyone’s attention some most shocking cases I am touch with.   I am keen to help eradicate such abuse that is going on within the UK and will be keen to assist Liberty in this respect.   Looking forward to helping in any way I can.

Last year,  following the case of “Deprival of Medication, Community Care” I was taken to Court of Protection at short notice, which was very traumatic and stressful for Elizabeth and myself.   That was over a year ago now and the outcome was that she could remain at home and had capacity to decide on this herself.     The reason things came to court was Elizabeth’s reluctance and inability to effectively communicate well with the team and she did not want to speak to them which I feel was quite understandable.  She had been in the most coercive environments during that three year period.   How can a fair capacity assessment be undertaken when someone is on the verge of withdrawal from the drug Clozapine, having been left without it for several days by a team of professionals who were intent on returning her back to care hundreds of miles away from home and family which they thought to be in her best interest.  In addition, the question of contact was also raised  ie., with whom did she want contact with.   Now that I have jointly acquired the files with Elizabeth I can see the full truth –  how can someone be expected to manage on £30 per week, having been in care for three years or so.  Elizabeth blames herself for this and that she had no food at the weekend.  I do not – I blame “care” that allows such things to go on and expects someone to be able to just get on with everything as they once could have but now on large amounts of mind altering drugs, this makes  thinking quite difficult at times but by that of course I mean every day chores and it is vital that someone on a lot of drugs has the correct nutrition and this is the kind of help the vast majority of MH patients living in the community need rather than maximum amounts of mind altering drugs.

So the Court case ended and we were left to assume there would be a further court case or possibility of.  There was no such thing at all and we heard nothing and then by the end of the year we finally got to hear there would be no further case.    My reaction was mixed, one of relief and my other thoughts turned to Elizabeth – what had been achieved.    She had a report from an Independent Psychiatrist which, apart from the fact she has capacity, this was not a good report in many ways and contained numerous errors which I quite rightly pointed out.

Anyway, you get nowhere by complaining to solicitors who offer a nominal monetary goodwill gesture but it is not the money that is important here it is the principle.    Expenses for Elizabeth should have been the prime consideration and also altering of the report by the independent psychiatrist that contained a massive mistake in terms of “Applicant which I straight away noticed and pointed out to the solicitors.  An independent psychiatrist is appointed jointly by solicitors and Council and I think this should have been corrected but instead the solicitors said that the main thing was that it said she had capacity however I want everything to be correct and 100% accurate as it should be.

The advice given from the solicitors to Elizabeth I thought was very questionable.

Anyway, I thought at least the fares should have been paid and expenses if nothing else as I had to pay for counselling for Elizabeth who suffers from Agoraphobia and was required to attend court on the fifth floor.  So all of this was a huge ordeal for her to go through.    A goodwill gesture of a small amount of money is not a goodwill gesture when the fares and court expenses should have been dealt with in the first place. So, I took  my complaint to the Legal Ombudsman who thought the solicitors acted fairly and that the goodwill gesture was the only thing left to offer.  Typical of the kind of response you get when you put forward a complaint and how a major organisation such as this can protect and take the side of solicitors and does not consider properly the vulnerable person concerned.     I think that this matter should go to the top and there should be transparency within the court system.   I admire Sir James Munby for wishing to see such transparency.   Whilst this may considered a trivial issue I would disagree as, unless there is accountability, nothing will ever change in a system that treats the weak, vulnerable and disabled in the most disgraceful manner.   I have therefore written to Sir James Munby as I think there are many lessons to be learned by this case and reports should be altered certainly not at any further cost to the public but at the expense of who has made such an error and who has refused to do anything about it.   A report such as this must have cost £1000 or even more considering the home visit to meet Elizabeth.      When a report has a major error on it then this should be altered but the Ombudsman disagree.

Anyway, since that court case after sixteen months, Elizabeth is reliant on  close friends and family to take her out.  She has not been given any kind of funding for support, despite the huge local budget in terms of the Better Care Fund, not to mention the saving of £60000, per annum – the cost of the care home.

There is nothing further I can do but await the response from Sir James Munby himself as all vulnerable people should be entitled to their expenses for  court and not discriminated against.   After Elizabeth did not ask to be taken to court.

Last week we had a visit from the Consultant Psychiatrist, as already mentioned in my previous blog and Elizabeth has just received a letter from him.  This letter copies in everyone except for us, the family, despite the fact that Elizabeth has given her consent.  I have made a point today to correct the address wrongly recorded in the heading and to point out that there is not just me as next of kin.  Lets be fair about this – everyone closely involved in the care should be “next of kin” and there should be no favouritism.  The only way I could ever trust a professional again is through Open Dialogue having seen the full extent of what certain people have been saying/doing behind our backs.   I have also written to the Chief Executive and made a point of copying in everyone including the GPs and all the next of kin.

On a brighter note I have just returned from fabulous Belgium (Brugges) and this has been a fabulous break.  Next time I would like to take Elizabeth not just to Brugges but to Geel which I have read so much about.  At least there they have the right attitude to those who have MH conditions.

Elizabeth is currently out with one of the carers today which gives me a chance to catch up on work at home.

Now I am back from a fabulous break I have more enthusiasm and energy to deal with all of this.

Today we had a home visit from the Consultant Psychiatrist for the six monthly review but it has now been sixteen months since Elizabeth came home from the care home.

There was no time to contact all my carers as we did not know about this and were not given a letter advising us.  The letter went to Elizabeth but luckily she showed this to me.

Elizabeth wrote down lots of points.

I later wrote down points as well.

So the consultant psychiatrist, prescribing nurse who I have met before and a student turned up at my house.

Questions were asked of Elizabeth who was in favour of myself as mother being kept informed and allowed information from the files.  This has always been the case but some consultant psychiatrists tried to make out she did not wish for me to see the files and there was a lot of coercion going on.  I can see for sure it was the team who did not wish me to see the files but now I have.

Anyway I liked the fact that the consultant psychiatrist had the decency to ask what involvement and how often would Elizabeth like to see the professionals.   One of Elizabeth’s carers came and told the consultant psychiatrist about the nutritional diet and how Elizabeth was going out to different venues and this particular carer is doing a lot to help me right now.   Later on my other carer turned up –  Anyway the meeting did not last long and the main thing that was established was that they were not going to be pushy – I hope not as I can still remember the other team and their behaviour.

Whilst discussions were taking place Elizabeth’s cat, fluffy ran across the room and I could not help noticing that this nurse was not comfortable with the cat being in the room and looked quite terrified.  It was lucky I did not have a Rottweiler.

I asked the consultant psychiatrist a few questions myself.  He could not answer as to why Clozapine Chemotherapy was introduced at the Bethlem.

I was disappointed that this consultant psychiatrist did not recommend a reduction even though she is on a high dosage.  He also could not answer my question as to whether Elizabeth would be expected to take drugs for the rest of her life.  I pointed out recent neurology tests but it would seem the consultant psychiatrist just wanted to plod on with the current level of drugs and I have come across this before.

BY ERIC COATES:

The most important book to me in my life, not only in my own development as a writer but in who I am as a person was This Way For The Gas, Ladies and Gentlemen, which is a book written by the Holocaust and Auschwitz survivor Tadeusz Borowski. That’s probably not important, really, except that he showed me how evil and dehumanization really works, and he did it in the plainest and most direct language, which is how I cannot help writing most of the time as a result, and particularly when confronted by evil. I believe that there is good and evil in this world, and that you have to know it when you see it. I don’t watch TV shows about drug dealers and gangsters and enjoy them. I don’t watch movies in which people exploit other people or kill them and enjoy it. I have seen evil up close and personal, and it doesn’t give me a thrill to see an account of it. Evil is not entertainment. But I also don’t walk by suffering and ignore it, as people who spend their time watching cool TV shows about evil do; I think it’s your obligation to do something about it, and to do it RIGHT NOW. When I read this obituary I had to cry, not only for admiration of one of my heroes but for the suffering that he tried to help relieve. A lot of people are talking about the Syrian refugees right now, and that’s good. But what most people probably don’t realize is that there is 1 schizophrenic in the world for every 100 people, and that these people are now undergoing what I call an Invisible Holocaust. There are, by my reckoning, more than 3,500,000 schizophrenics in the United States right now, and what most people don’t realize is that every single one of them who is forced to take drugs will die 25 years younger than you will, and that their lives — especially if the Murphy Bill passes — will be spent in misery and hopelessness and unfulfilled potential, all due to the effects of the deadly and horribly uncomfortable drugs they are forced by others to take. The United Nations defines this forced drugging — literally — as torture, but the United States ignores this ruling and goes on regardless, because the pharmaceutical lobby and the psychiatric lobby (a $330 billion a year industry) have such a lock on control of what’s happening. Most people have no idea that the killing methods and hidden form of the Holocaust itself was designed by psychiatrists, and that the first 250,000 to die were schizophrenics — BEFORE they implemented the same program on the Jews. What made this man a hero was that he recognized that kind of evil when he saw it coming and he spent his life doing something about it. You can sit back on your TV and click to another cool show if you want, and ignore the cries of suffering in the world. Or you can do something about it. We’ve lost a hero, but even more important is that we need heroes who are willing to do what it takes right now, before it’s too late, and even more millions die.

“Those Who Have The Privilege To Know Have The Duty To Act.” —Einstein

Greg Charalambakis

Elizabeth and I are getting such wonderful advice right now from an expert on nutrition.

I am going to share some of this wonderful advice with everyone.   I am hoping to meet up with other former patients at the weekend.   Some of the wonderful advice I have received could be of benefit to them as well.

One of the treatments to help people get rid of excess oxalates is to take very high doses of magnesium, or in some cases, actually give intravenous infusions of magnesium. Because it has the least solubility with oxalates magnesium will help to dissolve them, so to speak.

MAGNESIUM