My views on mental health care in the UK are based on personal experience and I am in touch with a lot of people who are suffering right now who have their sons/daughters under the UK’s unfair system where they remain in hospitals and care homes for so many years on end and become disabled and then the excuse is risk to self when all that is needed is more support and for a team to work with the family in a fair manner and for psychiatrists to take note of the harm they are doing by giving maximum levels of drugs in care establishments and to understand why a parent would wish to see their son/daughter on minimal amounts of drugs when it is proven that there are physical health conditions.  However all you get is dismissal and exclusion if you dare to request this.

Degrading Treatment – which is commonplace in the UK

I have not only seen this but experienced it myself.

Distressed patients waiting outside nurses’ offices for a long time and the way you are treated if you dare to complain.   I have witnessed more than once professionals smiling at meetings.  If you show emotion, you end up getting labelled yourself.  Psychiatry does not recognise emotions – this is where they go wrong in my opinion – emotions are seen as symptoms of illness instead of helping someone who has suffered trauma, drugs are given at high levels which is no cure at all.    I was never imagining things or being delusional when Elizabeth and I were being harassed a while back -now that I have acquired the files I can see why the team did not wish for me to see them.  The team were visiting for a purpose to report everything that mother said and this they certainly have done to their credit in the files in a nasty manner.  Comments were not just confined to me but to my carers and also to Elizabeth which is awful in my opinion.  By all means go ahead and say what you like about me but why pick on my daughter and my carers.   The contents of these files go on to be read by other professionals who are influenced by them “we have heard all about your past behaviour”  it is like a diagnosis – once given a label sticks for life and there is preference given by the bulk of the team – many of whom are not medically trained to just one of say 5 diagnoses with disregard to whether the label is accurate or not.  It is like having a life sentence.  Whilst some may be happy with a label there are others who are not like Elizabeth.   All these stigma campaigns are never going to do anything good whilst the system allows for someone to be treated in this way –  stigma campaigns are only directed at the public but how about looking at the reality of how patients are treated in the care system itself.

The words “angry” “aggressive” “hostile” are favourite words of professionals that they like to use constantly in the files but there are other much more disturbing things – some too disturbing to put on this blog which I want a full investigation into.   It is easy to write behind someone’s back – how many bother to get the files and this is made extremely difficult.  If a patient originally consents to this the team will change this “you don’t want your mother to see the files”  – in actual fact it is the team who do not wish that mother to see the files for obvious reasons and now I have and I am neither shocked or surprised by their contents.  It is good to know which members of staff are saying certain things about you behind your back and I should feel flattered that I am regarded as a “special case” however I feel this status discriminates against other patients who need attention and who are ignored.   A special case is when there is money or jobs involved –  £60000 care home fees.  A CTO about to be organised costing/needing more funding of public money.  A special case relates to anything that has court proceedings when anything said or done can be used against you in court by the team as again it costs thousands to take you to court.   Deprivation of Liberty is not being handled well and patients are not being treated fairly.  To withdraw “treatment” is to try and force return a patient back into care where it was planned to place a section upon that person.   Instead of working with the family they work against the family.   Instead of understanding they bully and harrass.

We spent hours and hours waiting for professionals to help at local level but were told to take her back to the care home in order to get the drugs.  I was afraid my daughter would suffer injury so I ordered a cab to take Elizabeth to Harley Street as no one cared locally.   In Harley Street you can get to see a consultant psychiatrist immediately however none could help me re the Clozapine so I contacted Novartis and they could not help either. In the end I have to contact solicitors as I felt her life was being put at risk by professionals.  I may not be happy with the drugging of my daughter but I know that you cannot just stop taking the drugs.    The team ignore physical illness for instance –  there is no genetic links to kidney disease in the family.    There are other disturbing things too in this respect. Past family history is incorrect.  Everything I thought was going on has been confirmed so I cannot be accused of imagining things.   If something serious has occurred under care this recorded as “Delusions” .   I am disappointed in the Police –  I am not impressed with certain comments.   I am disappointed with the legal profession as I do not feel they care for anything much apart from their expenses.  I am disappointed in the whole system as there is no backing for someone like myself in the court system. My own experience of Ct of Protection is good but when you read the shocking contents of the files which are highly inaccurate,  when presented to Court who will be believed especially when  the entire team can write what they like about you behind your back in a nasty way.  Complaints are dealt with unfairly as  they investigate themselves so when the complaint goes further up to say the PHSO for instance or the CQC who is going to believe a mother or a patient in preference to the entire team who stick together like glue to protect one another.

My main concerns just like other mothers is the huge level of drugs being prescribed to young vulnerable patients in hospitals and care homes.  When someone is so drugged up they are too ill to contact solicitors and are at the mercy of professionals who ignore physical health.    I have seen the comments in the files “optimise the drugs!” from a Neurologist going back to when my daughter was originally under local “care”.

I am sorry for mothers/parents who wish to get their sons/daughters out of the system but cannot as professionals play on risk factors and some of the parents have to been able to find a firm of solicitors willing to help them.  Some have been in the system for years on end and are being deprived of phones and contact with families, leave etc .   Some have developed serious physical conditions as a result of the huge amounts of drugs given and there is no accountability in the UK –  I know of several cases.   Certain professionals it would seem are above the law.

Elizabeth is improving at home now because she is being treated like a normal person and encouraged to do things for herself she is getting better and I have a wonderful trainer/nutritionist who comes to the house twice a week.   She needs prompting to do basic things and could not manage on her own 24 hrs but that is no excuse to keep her stuck in the care system for years and years on end to the point of complete disablement with destruction of her physical health due to huge amounts of drugs given.

When Elizabeth first came home she did not want to go out .  All the time she would cling to my arm and that of my carers – sometimes it was impossible to get her to come out and she was ill at the thought of going out.  She is getting better now thanks to being in the right environment.

Whilst at the care home we took her to Woburn Abbey – Elizabeth could not sit in he café for long and could not enjoy the day out.  Same applied to when I took her to Big Feastival – Elizabeth was not well and wanted to go home on arrival.  Now things are different –  I am able to take Elizabeth out to London and in crowds.  She is walking better now and has proven that she is not an entirely hopeless case.   How many more young people are treated like this?   Well I am in touch with parents who are extremely upset as their sons/daughters are stuck in hospitals and care homes a long distance from home and being drugged up to their necks.  Professionals are abusing patients’ human rights and huge sums of money are being wasted by keeping someone in hospital long term or care homes instead of helping families.  £61 does not go far on carers allowance and should be increased.  Direct payments should be given to families – this worked well with my father who had Alzheimers.   When everything about home and family is written about behind your back in the most nasty way how can you trust the professionals?  When consultant psychiatrists do not wish to see you or speak to you on the telephone – I do not think this is good at all and this shows that they do not care.    I do not think that managers or non medically trained professionals should be as involved as they are in terms of “medication” to the point they themselves push the drugs to patients.  I therefore do not agree with integrated care as I have seen that total disregard has been given to the wellbeing of my daughter by non medical personnel who have a lot of power – power to take you to court and sever contact. – power to put someone back on section even though they are doing well and this I would call abuse.  I would also call this a waste of public money.

Some contradictory Points:

In a letter addressed to me, following my written concerns regarding “medication” given at high levels – here is the response from a service manager.

“You are certainly right in emphasising that medications can have side effects and that the dosage should be reduced to the lowest level.  A psychiatrist treating a patient will explain possible side effects and will help a patient who has mental capacity make an informed decision about their treatment”

He continues in saying “I am satisfied that this process is being followed with regard to present anti-psychotic medication.”  

My response: You are not a doctor and how can you be satisfied especial with the maximum drugs given to my daughter? 

He then talks about mental capacity:    I would agree with the following points:

“For someone to be classed as seriously incapacitated they would normally be very severely handicapped and incapable of feeding themselves for instance”.   

I recently got slated on social media for using the word “handicapped” – well in the case of my father I pointed out he was severely handicapped in the later stages of Alzheimers –  I fail to see what is so offensive about this when I have seen the most shocking things directed at me as a mother and my daughter in the files.

I would comment that capacity can be played upon – for instance huge levels of drugs as are given on the acute wards can destroy thinking ability – when it suits them a team can say that someone has or hasn’t got capacity but Elizabeth did not want the capacity assessment as she was not feeling too good it is assumed she does not have capacity when all along this without doubt.   Deprivation of Liberty was used to try and force her back into care and to sever contact with me.

The service Manager talks about Physical Health and the importance of regular physical checks/contacting the GP – all well and good but I would like to see this service manager cope on huge dosage Quetiapine – maximum 800mg and other chemicals on top of this –  I was shocked to see that Elizabeth was given even more chemicals on top of this such as Haloperidal and Chlonazepam.    It would appear the team have not properly read the files and it is a good job that I as Nearest Relative have acquired them as I am looking after my daughter’s physical health and when these professionals talk about “best interests” – it certainly is the best interest that Elizabeth has come home – at least I am not dishing out Lorazepam and contra indicated drugs constantly  Even the GP in Wales did not know why she was put on the Metformine.

Parents/Carers:

As a carer/parent you are excluded – confidentiality and capacity played upon so as to deny access to any information and this can be done to cover things up.  I have been looking into capacity as this really interests me –  capacity is the ability to make choice.  This would apply in Elizabeth’s case and she certainly did make a good choice to come home and has had the capacity to tell me all about the coercion going on at the care home.  My father with Alzheimers in the later stages was regarded as someone who had no capacity however I knew that he could understand some things – just because my father could not communicate effectively, emotionally he showed signs of understanding when once a nurse stood over his hospital bed discussing delaying of his release from hospital.

Writing someone off:

The trouble is with the care system in the UK many young people are currently being “written off” –  when someone like Elizabeth is labelled “treatment resistant”  they are not given hope or encouragement and left with little/no support in the community.  It is wrong to write someone off as being beyond help and dismiss emotions and what may have happened to that person.    It is not a case of shortage of beds – it is a case of wrong treatment.  The very fact that there is a shortage of beds means that the treatment is  wrong.

At home Elizabeth is safe and happy.  It is insulting to see how she has been described in the files.   Elizabeth sometimes needs prompting but will always get on and do her own washing/ironing. She can cook basic things.  She is gradually gaining confidence thanks to the personal trainer who comes to the house twice a week.  Elizabeth suffers from Agoraphobia but despite this I manage to take her out but she is too afraid to go out alone.   I  hope she will eventually as there are so many nice things around this area all within walking Studio nearby and another gym that is closer.  The trainer took her out today.   No help is given to the family but £60000 and more is being saved to the taxpayer.

Last Weekend:

Where Elizabeth has gained weight – the drugs are notorious for weight gain,   I try and get in very healthy food. We went shopping in East London and Elizabeth bought some very nice clothes.  On Sunday Elizabeth did not want  to go out at all so we had a restful day at home.

This weekend:

Taking Elizabeth out with me into London to an exhibition.  Hoping to meet former patients./survivors.

I try to make the most of my time with Elizabeth at the weekends to encourage her to go out and regain her confidence – by meeting former remarkable patients who are getting on with their lives is wonderful inspiration and by going to the courses/conferences and listening to decent professionals speak gives us hope that one day the Government will take notice and do something like raise carers allowance and ban ECT and huge levels of drugs being forced on patients long term and recognising that there should be choice and decent care that is based on holistic/therapeutic /nutrition just like Chy Sawel wish to offer.   I would like to see politicians attend the forthcoming Maudsley Debates.  Elizabeth and her sister will be with me on this occasion and there will be other mothers going too who wish to see action and not just words.

Today I’m am very happy – it’s Mother’s Day in the UK.   What better gift could I have but my daughter Elizabeth being home again after so many years.  I’ve been thinking today of all the mothers and people who have relatives currently held prisoner under the cruel MH system of the UK, a system that you cannot easily get them out of.  The public are unaware of this as it is not being reported.  I am in touch with many people in this sad situation where sons/daughters are sent hundreds of miles away – in some cases they are not allowed phones to stay in contact.  The way families are treated is terrible in the UK and when I have spoken to such parents they are heartbroken –  many cannot afford to visit very often, bearing in mind distance.   It was not easy for me –  Elizabeth was sent to Wales and you cannot just get in the car and drive down for the day there.  Not only was it expensive but there was not one ounce of help in terms of advocacy.  Once someone is moved away from home and family, they are put in a situation where there is strict control  in a coercive environment.    The patients are not cases where they have killed someone,  they are cases where someone cannot cope in the community and need extra help.  The mothers and families are people who care and are desperately unhappy.     The Government pays only £61.35 for Carers Allowance under a hospital thousands of pounds are being spent a week.   Under a care home £1150 per week.    I do not know how much extra it is to put someone on a CTO in order to force them to take drugs for the rest of their lives.   All of this is going on whilst A&Es and maternity units and other things that affect everyone are being cut under the NHS.

I am getting more and more letters and have spoken to several parents/husbands etc who are at their wits end.  I am finding that what I was faced with is commonplace.

The other area where huge sums of money being wasted is under the legal sector.

If you are a Nearest Relative you can overturn a section.   First of all the patient has a Tribunal – quite often this will fail.  As the Nearest Relative you can appoint solicitors paid for by legal aid at this level.   You have to go through a Manager’s Hearing first but at the Manager’s Hearing they refused to release the files to my solicitors.  This did not go ahead.    I meanwhile had arranged with a nicer psychiatrist who was covering duties for tests to be done for Dr William Walsh.  I had arranged for these tests to be carried out at the Bio Lab and of course they came back showing significant decline in terms of physical health.   Tests such as these are not cheap and the team are quick to dismiss them as they do not care about physical health and like to concentrate on maximum drugging.   So Elizabeth said she was unhappy – eventually an independent psychiatrist was appointment – the choice being that of the Nearest Relative.    Being so drugged up in this private sector hospital, not seeing the family regularly, it was difficult for things to progress quickly.   Elizabeth’s solicitor should have visited her and helped her but I did not think that was the case.   Things just became long and drawn out and the more correspondence involved the more expense at all at public expense.   This is where the money is going.

Under the Court of Protection where a Council can deprive liberty stating the patient to have no capacity, you get no representation in court.  It costs about £800-£900 a week if you have a job and home to provide your own solicitor.   I do not think it is a fair system at all.    For a family to have a child or vulnerable person taken away is terrible and so is it terrible for families to have someone stuck in the system when the parents are decent and care – in instances where the patient may have reacted badly to drugs in the past and I am talking about prescribed drugs.  Not everyone has taken illicit drugs to get themselves into the situation of being admitted to acute wards.  Not everyone has abusive parents.   Most have suffered some form of trauma and being on a noisy overcrowded ward is untherapeutic and can affect someone’s behaviour.  I never want to see Elizabeth back on any acute wards again as I know these are places where psychiatrists dish out drugs at huge levels and I can see that this kind of place just resulted in Elizabeth becoming worse.   Since being home, her behaviour has been completely normal but disabled due to being on last resort Clozapine which is far from a wonder drug in my opinion.  I have read the files of shocking content with Elizabeth who has a right to know.  Even past history recorded in the files is wrong.  The words “hostile” and “aggressive”  are frequently used out of context – when something goes wrong this is covered up – if you complain or show any kind of emotion you get labelled yourself.  Never have I ever threatened violence to the team but that does not stop them from labelling you as they so wish.  There are things missing and other things I did not expect to find amongst the files.   I have requested certain papers that are missing and have been refused them.    To get rid of a Nearest Relative can be a convenient way of covering things up when there are serious things to hide.

Taxpayer’s money is being wasted, vulnerable people are kept for years on end incarcerated in hospitals and care homes.  They are being drugged excessively and end up being disabled.

If the Government were to give more money to individual carers that would be good but £61.35 does not compare with the cost of a care home or private sector hospital for instance.  Diabetes is a condition caused by the drugs, Parkinsons disease and blood disorders.  I suppose keeping someone away from their families is a way of safeguarding themselves for when things go wrong.  If someone does become injured as a result of care the legal profession does not want to know.  I do not think the legal profession is treating vulnerable patients fairly – it is wrong that a hospital should recommend either advocates or solicitors.

I do not think it fair that there is no legal aid representation at higher level in courts especially in cases such as Deprivation of Liberty and severing of contact with a family member.

I think the complaints system is wrong as I have seen at first hand how they investigate themselves.  Who is going to question these professionals when they stick together like glue and make you out to be a terrible person all behind your back.

The Council has cut funding for the local Carers Centre but they have no end of funding for “special” cases – “go in twos – report everything that mother says”.  All this, when there are some people who  would like attention.

I wish we had a fairer system in the UK such as Open Dialogue.

I wish we had a National Metabolizing Scheme –  it is all very well saying “risk to self or others” being the criteria for release from section but most important of all, underlying physical health problems are ignored –  if someone is chronic treatment resistant –  this means poor or non metabolizer – the treatment being given could be doing more harm than good and only experts who are familiar  with the drugs themselves should be allowed to prescribe them.  I was appalled that doctors had not heard of the tests I wanted to have done (P450 liver enzyme) and I came to the conclusion that many were not up to date with their knowledge.  What do they know about adverse drug reactions ?- drugging of patients is being done as a means of convenience/control with total disregard for physical health.  They are driven by blind ideology.  Many do not even know how the drugs work.  To prove capacity under Court of Protection once again an independent psychiatrist is appointed – must cost thousands for a report to be prepared on top of the court fees.  The correct regimen for administering psychopharmaceutical medication is by titrating to a minimum therapeutic dose, not only to  protect the patient but to reduce the cost of treatment.

Degrading treatment against mental health human rights seems to be commonplace.  The withholding of drugs is in breach of Article 3.

Kucheruk v Ukraine (2007) ECHR No. 2570/04 6 December – lack of adequate medical treatment and lack of adequate investigation into the applicant’s complaints of ill-treatment.   (The person investigating the complaint passes it to the department the complaint is against, the complaint is investigated by themselves)  all of this  very relevant in Elizabeth’s case.

Being at home has meant that I can share all the nice things with Elizabeth such as wonderful shows and we went to see the brilliant show “Once” last night which we both enjoyed.   We have seen two other shows recently and I want to go and see “Beautiful” again. Yesterday we met with former patients and today we have been to the cinema to watch  the sequel of Marigold Hotel – a very good film.

It is cheaper to pay more Carers Allowance than put someone in care and more thought should be given to this by the Government.

Apparently I cannot be regarded as a vexatious complainant  – however they regard me as being Prolific –  that is because none of my complaints have been answered satisfactorily.

Prolific complainants are those who raise the same issue despite having been given “a full response“.  The kind of behaviour they  display are as follows:

Complaining about every part of the health system regardless of the issue; 

No this is wrong!  I as a mother think that there are good things within the NHS – I am not talking about MH care though.   I admit to disliking a system that I personally regard as abusive , that allows the forced drugging and restraint and ECT to vulnerable patients who can be easily coerced if given huge quantities of mind altering drugs. I  think that the system is failing many vulnerable people like my daughter but when you  as a parent/carer point things out you are disregarded and labelled yourself as someone who is troublesome or vexatious.  Patients risk being further labelled as having symptoms if they complain or show any kind of emotion as to how badly they are treated.

Seeking attention by contacting several agencies and individuals;

When someone is not receiving adequate response who can blame them for going to other “agencies” as naturally that person would like to see something done at the very least.

Always repeating a full complaint;

If a complaint has been brushed aside and not answered – this is a reason why complaints are repeated.

Automatically responding to any letter from the Trust;

Well that rules me out as not only am I too busy the content of any such letter is always the same.  The words “satisfied” and “excellent care” have been mentioned in response so it is a waste of time and energy even if your complaint is very serious and something really bad has happened.

Insisting that they have not had or received an adequate response;

Well if a complaint has not been dealt with properly it is no wonder someone insists they have not had an adequate response.  I will explain later about this where marked  **

Focussing on a trivial matter;

When there have been incidents leading to serious investigations whilst under care, I can see that the Trust’s procedures are to regard these matters as “trivial”.  No-one will ever admit responsibility or say “sorry” – unless they are forced to and this can only be achieved in court or as previously ordered by the Ombudsman.  If an apology is not forthcoming then they have to back down on certain things and even forced to apologise.

Being abusive or aggressive.

It is easy to label someone as abusive or aggressive. This is not said to your face but behind your back so that when the next team look at the files they believe everything unfairly written and that can in itself have a detrimental effect on the care of the person concerned.  Also in Elizabeth’s case there is disagreement between more than one professional on diagnosis and treatment.  

My interpretation of someone being abusive or aggressive is threat of violence ie to kill or hit someone, which is not something I have ever done.  Neither have I been abusive in swearing the F word  yelling, screaming and shouting as a visitor on the ward but if something badly goes wrong and you dare to criticise or complain this is regarded as aggression. The worst I have done was  in fact to criticise the placement of my daughter locally when I could see that things were not working out.  I have also criticised the “care” of maximum drugging and inability to protect my daughter whilst under care.

Whilst under local care this is the medical attention given to my daughter:

Concomittantly prescribed drugs at huge dosage regardless of serious health problems:

Quetiapine XL given at 750 mg and this was raised to 800mg

On top of this Clonazepam 1mg

Lorazepam 1 – 2 mg – max 4 mg/24 hrs

Haloperidal 5-10mg (30mg max/24 hrs

At the Bethlem enormous amounts of concomittant drugs given:

Maximum dosage of Olanzpine mentioned – this mixed with the Quetiapine.  800mg of Metformine given with Clozapine 300mg despite the Advanced Declaration of no Clozapine,  then Bisoprolol .  Elizabeth was not allowed any leave at all from this hospital and I was only aware of the contra indicated Metformine and Clozapine and or course no doubt Lorazepam was given and paracetamol as Elizabeth would complain of headaches.  One drug to counteract another and when you mix two together this can cause adverse behaviour and so a section is placed on that person.  The answer I got when I queried the Metformine being for diabetes Type II was that it was for weight loss and I knew this was being given off label.  I had no idea that my daughter was on Bisoprolol for heart problems.   Now I know everything that is kept from the family and made secret and when a patient is drugged so steeply they can hardly have consent/capacity at times to agree to a drug that they have previously said no to by way of an Advanced Declaration.  To gain “consent” this is achieved by means of coercion, the whole team working closely together with one Agenda in mind.  If a person is drugged so highly they are like “putty” in the hands of the team and made to feel bad if they do not agree and that could mean agreement on drug treatment or ECT for instance, or change in solicitor or to even sever contact with a parent and displace that parent as Nearest Relative for example but sometimes this coercion can backfire.  Sometimes despite the enormous amount of drugging a patient can still retain capacity to say “I am being put under pressure Mum to choose between you and my dad and I do not think it is fair – I do not want to go back there Mum”

HERE IS THE TRUST’S POLICY:

Trust’s Policy and Advice from Ombudsman and here are the guidelines:

Regardless of the manner in which the complaint is made and pursued, its substance should be considered carefully and on its objective merits.

Well I thoroughly agree with this above.  A very good guideline.

Complaints about matters unrelated to previous complaints should be similarly approached objectively and without any assumption that they are bound to be frivolous, vexatious or unjustified particularly if a complainant is abusive or threatening.  It is reasonable to require him or her to communicate only in a particular way – say in writing and not by telephone – or solely with one or more designated members of staff but it is not reasonable to refuse to accept or respond to communications about a complaint until it is clear that all practical possibilities of resolution have been exhausted.

Again agreed and by the way practically all my complaints have in writing as I like to keep records of things.  Responses are usually copied in with many different members of staff when you write or they respond to a complaint and as I can see, the same names are involved time and time again.

It is good practice to make clear to a complainant regarded as unreasonably persistent or vexatious the ways in which his or her behaviour is unacceptable and the likely consequences of refusal to amend it before taking drastic action.

It would seem like any complaint does not go down well and is clearly not acceptable but if a complaint has not been addressed how can someone be regarded as having unacceptable behaviour in being vexatious or prolific in their approach?

Apparently it is stated “it is inappropriate for SB to be labelled as a vexatious complainant”  “she keeps bringing up new issues which makes it impossible to label her a vexatious complainant”   Had I gone to the Ombudsman, there was a great deal of concern about the Trust being criticised and the feeling was that the Ombudsman would take the view that because different issues were raised in the complaints, SB would not therefore be considered vexatious.   So I could not be called vexatious, despite the whole team wishing me to be labelled as this, so I have read in the files.  In order for this to be done someone would have to check that all her complaints had been answered and that she did not raise anything new.   I can save the bother by stating that “No my complaints have not been answered” – the latest one being the deprival of Clozapine for several days.

A team will try and restrict a complaint to one person – it is all too easy to fob someone off when certain management personnel look upon you as being “troublesome” – I am even called that “poor” woman.  Well I do not consider myself to be a “poor uncontained woman”.  This is not the worst that I have been called – yes there is even worse comments.

Below is what one professional has to say:

“in the context of SB’s serial communications over her daughter ‘s care and treatment these in my view do not warrant further formal investigation”

Between 7 – 10 names are copied in – the responses all the same “we are satisfied our treatment and care arrangements are satisfactory”.  It is interesting but not surprising to read what is written behind your back by professionals, the bulk of which are not medically trained.

If a member of staff believes that a complainant is being unreasonably persistent or vexatious they should raise the issue through their line management to  Director level if necessary.   I have had to do this myself when my daughter was being visited in twos by members of the Home Treatment team despite telling them not to call – it was unnecessary as the titration had been completed and all they were doing were asking personal questions.  I complained to the Director of MH and the visits stopped but they were ordered in the first place “go in twos and report everything that mother says”.  I had to call the police –  I invited the police to my home as I would rather have dealt with the police as the team were ignoring Elizabeth’s wishes.

The Trust has a zero tolerance policy which applies to verbal as well as physical abuse and aggression.  If a complainant is abusive or threatening staff should make a written report using the incident reporting form.  A complainant who is abusive or threatening should be reminded verbally in the first instance and in writing if he/she persists about the Zero Tolerance policy.   This is all very well and good but is biased as aggression and hostility can be shown towards the vulnerable patient and family yet this is allowed.  

I have found staff to be aggressive and have been threatened quite a few times  and that is why I address my complaints in writing.   There is a 100% tolerance towards staff as they all stick together and investigate their own complaints.   I am laughing about this –  I wish I could investigate myself.  In any other profession this would not be allowed.

MY COMPLAINTS AND THE COMPLAINTS PROCEDURE.

Not everyone has viewed my complaints as trivial – for instance the Healthcare Commission criticised the way/ manner in which my complaint was dealt with over a very serious incident.  This led to an apology at top level.

This is how complaints are dealt with in the local area:

You write a letter to the Chief Executive of the Council.

They supposedly investigate – in my case my complaint was deprival of Clozapine for several days putting life at risk.

You then chase up a response as there is a wall of silence.

You then get a letter from someone dealing with the complaint (someone with whom I actually spoke to on the phone)  this person could not see why Elizabeth should be upset by being asked to choose between Mum and Dad.

Now this is interesting …………. the person assigned to look into/ thoroughly investigate the complaint decides that the best person to answer that complaint is none other than the person who the complaint is mainly about as in this instance –   so the complaint is answered by the person or department that the complaint is all about  ……………..”you know the family well and are best placed to deal with this” – words to this effect.  This same person who was assigned to investigate the complaint is quoted as saying “I have no doubt that this patient would benefit from a hospital environment”  “We have to be more robust regards to why institutional care would absolutely benefit this patient.  In a nutshell it is about proving why your assessment as Care Coordinator is paramount in setting the agenda of care needs required.”

You have clearly not done your investigation properly. You passed my complaint on deprival of drugs to the department who you saw as “best placed” to investigate in other words the department to which the complaint was addressed so that they could investigate themselves.   You have not thoroughly read through the file –  in the file it says how distressed Elizabeth was in hospital so where do you get this idea from that a hospital environment is best? It is clearly not as it is mentioned that hospital environment had a detrimental effect on Elizabeth yet you say differently.   

Then comes the usual letter from the Chief Executive’s office – they are satisfied everything has been dealt with fairly however I can prove otherwise  as I can see exactly what has gone on and this would explain why none of my former complaints have been properly dealt with and by the way  they were not trivial complaints. They were very serious complaints and new issues as more and more serious things came to light.  For anyone who doesn’t know Clozapine is a last resort drug for Schizophrenia and given to those regarded as “treatment resistant”.  I thought this term at one time was ridiculous but I have learned a great deal about “treatment resistance” – poor or non metabolizer.   The dosage is said to be too high by those who really know about the drug – the pharmacologists- not the management team involved.

Since  coming home no longer is Elizabeth in bed at 6.00pm and sleeping lunch time.   I am trying my best to get her out to regain her confidence as I want her to be independent and not dependant  on others.   Elizabeth has a Freedom Pass but unfortunately she cannot use it freely -she relies on people to take her out as she has developed Agoraphobia.  When someone is institutionalised for so long they become dependent and disabled so how can institutionalisation be best?.  It awaits to be seen whether Elizabeth will be refused a this Pass which is due for renewal end of March based on current relations that are rock bottom not only between myself but Elizabeth and my carers who want certain reassurances  in light of disturbing things in the files.  Unfortunately Elizabeth is not able to work – very disabled due to the high amount of drugs given and could not get herself out alone to attend appointments or even go for the regular blood tests without the help of close friends.  If I did not have this help I would have to give up my job which is full time.

In May 2014 when Elizabeth came home  to say from where she was placed after long hospital admissions I had every intention take her back as agreed until I heard her disturbing account of what was going on and when a member of staff said “we are not speaking to you any more as Mr B is next of kin”.  At first she was happy until  a nurse put pressure on her to choose between Mum and Dad and Elizabeth quite rightly felt upset about this and did not wish to return –  to cut a long story short she has been at home now for nine months and is doing well.   There are shocking things written in the files but I see a first hand that my daughter is gradually getting much better and I have plenty of witnesses who would agree with that.

When the drug Clozapine was deprived I did everything I could despite my feelings about the drugs to get it as I know you cannot come off these drugs immediately in one go.  I wrote to Councillors and received no response.  I wrote to my MP who does not involve himself with issues on care. I sent my blog documenting my failure to secure the drugs to all leading politicians via social media.  I offered to drive hundreds of miles to pick them up and went to Harley Street in desperation having contacted solicitors when attempt after attempt failed at getting the drug locally.-   When someone is not on a section or CTO it sounded very suspicious to me and I was absolutely correct to be suspicious.   There is a lot of money to be made by keeping someone in care at taxpayer’s expense at a cost of £60000 a year plus extra money to be made by arranging a CTO.   But why should someone who is complying with the drugs, having been imprisoned for several years, sent hundreds of miles away from  home and family, denied contact with a mother the team regard as a vexatious complainant be forced back into care/institutionalisation when they are unhappy.  Why should that person be treated in the most despicable manner with their life threatened by deprival of drugs by a team of professionals who had one agenda to re-section  her and sever contact, restricting visiting rights.    Whilst in care not only did hundreds of pounds worth of possessions go missing but I am unable to mention certain things that happened whilst under care which are too shocking to put on my blog here.

Elizabeth was traumatised at being on the local acute ward which was not peaceful and she was displaying signs of adverse reaction such as Akathisia.  She was under the “care” of a scheme in the local community where she went missing.  She is lucky to be alive after what happened to her.

The Royal Bethlem hospital also gave maximum amounts of drugs too – this regime was followed by private sector Cambian and then the care home.

I can see now why they did not want me to see the files or Elizabeth –  physical health is ignored but who is going to find out with a team working so closely together who will stop at nothing to achieve what they want to displace you, to sever contact and no one would ever find out about anything serious then – the person concerned would be distanced from their family and be so drugged up time  that this person could not be in a fit state to answer questions, things would be covered up completely then.

ON A HAPPIER NOTE:

Saturday – a busy day out all day long with Elizabeth in Central London.   We went to see a Healthy Eating Show at Olympia.  I took Elizabeth to lunch at the wonderful Wholefoods store in Kensington High Street.  On the top floor there is an abundance of choice in regard to restaurants.  Elizabeth chose Japanese food which is very healthy.  At the last minute decided to see a show second week running.  Last week we saw “Beautiful” – the Carole King Musical which I hope to go and see again.  I wanted to see the Musical “Once” but this was sold out.  We were in the end very lucky and fortunate to get tickets to see the show “The Commitments”  –   I thought this show was very good and at the end everyone was standing up and singing along and dancing in the aisles – like a party atmosphere.  I have booked tickets to see a festival later on in the year and my course through ISPS in Liverpool.  I hope to meet up with one mother I have go to know via social media who has also gone through a shocking experience with the care of her son.

It is good to be able to share nice things with Elizabeth in light of all that has been unpleasant – none of this would be possible if it were not for the support I have had from close friends/family.  Thank you all.   Many thanks also for the wonderful support I have had from complete strangers via social media.

This weekend I am hoping to go to the Healthy Eating Show at Olympia.  I have been to other exhibitions held there in the past which were very good.Last Saturday I was taken to London to see the show Beautiful –   a musical -tribute to Carole King –  I thought the show was very good and my Mum wants to book again – the seats were very high up but I coped well because normally I am very afraid of heights but I had not taken the drug Clozapine beforehand so maybe this made a  difference. I have to lie down when I take this first of all and I cannot eat anything after taking this drug – it makes me feel dizzy but if I lie down for a while I feel better after some time.    We also went for a meal to the Opera Tavern in Covent Garden where they do Tapas.  I liked it very much – the food was good.

I have a nutritionist/trainer that comes every Monday who puts a lot of emphasis on eating the right foods.  I am trying to keep a record of that at the moment – sometimes I crave for chocolate but I know I must watch this now more than ever.  The drug I am on causes tremendous weight gain and I never had to watch diet before like I do now as I never seemed to put on weight before.  The last consultant psychiatrist did not alter the dosage like I had hoped and I requested this but no one took any notice.  I am supposed to have a new consultant psychiatrist but have not met him yet.

Today I have had a very nice day.  I went to  Bannatyne Spa Luton with my sister as she got me tickets for Christmas.   I had various treatments, sauna, steam and I went swimming.  It was a wonderful calm experience and I felt like I was in heaven.

Since coming home although I have not been out anywhere on my own yet, I have been getting out much more than before and I do not feel the severe panic attacks I used to.    I used to feel physically ill and make all sorts of excuses to avoid going out anywhere.  I am also doing more for myself but sometimes I do need a reminder.  The drug I am on does make me feel very tired and I get out of breath sometimes when I am out walking and have to stop.

This weekend I am hoping to go to the Healthy Eating Show at Olympia.  I have been to other exhibitions held there in the past which were very good.I will write about the exhibition soon.

I am hoping to go somewhere nice on holiday this year as I have not been anywhere in three years and away from my family.  Right now I feel happy. I would definitely like to this spa again.

 

 

Elizabeth is 28 today and it made my day to see a message left for her by a friend she has known since nursery school.  I telephoned to pass this on to her.  Tonight she is out with her sister and friend at an activity centre called “Top Golf”.  I understand they are taking her out for a meal too.  I have appointed someone to look at her diet regularly as unfortunately the NHS only provide 1 visit with a nutritionist and I am worried she has diabetes as I have read in the files some disturbing things and have had private tests done myself.

It is peaceful in the house so now I have a chance to read my new book called Emotional Health by Dr Bob Johnson.

 

I thoroughly agree with Dr Johnson  emotions are the single most vital ingredient in all human affairs.    I can relate to this book as I have observed  how Elizabeth refuses to emphasis on certain issues that she suddenly and out of the blue will mention. She will end her conversation by saying “not going into it”   I feel when the time is right she say more but I will not pressurise her on this.  Since coming home she is becoming more open as it is not an oppressive environment like the institutions she has been sent to.  Training of professionals from what I can see appears to discount emotions and this shows where things are wrong.  Emotional health means us controlling them rather than the other way around – I would agree with this.  The trouble is not just Elizabeth but other former patients who I am in touch with complain that their feelings are ignored.  This is quite upsetting to patients when they are treated like they are invisible.  Training is supervised by institutions where discussion of emotion is taboo.  “Why wont they listen, Mum”.   I have come across this myself and total lack of understanding on their part.   On my blog I feature something written by a former patient who describes psychiatrists like robots and I would agree.    This book gives a great understanding on the subject of emotions.   A decent psychiatrist should place themselves in the position of the person and understand the importance of truth and gaining trust and consent.  If you do not trust someone that person is not going to share their emotions and Elizabeth is often referred to as being “guarded.   Coercion is something often used in psychiatry but when dealing with matters of the mind there is the question of whether consent has been sought and obtained and I doubt this in Elizabeth’s case.    I see Trust having been betrayed as Elizabeth signed an Advanced Declaration stating she did not wish to take Clozapine whilst at the Bethlem.   Truth was not evident as Elizabeth was so drugged up she did not even know she was on Clozapine and so the team had therefore coerced her into having this chemical whilst weakened on a maximum dosage of Olanzapine plus other drugs on top.   I reckon this was when they introduced a drug with the letter ‘M’ . (Metformine) This is when I got to find out the truth – another patient urged Elizabeth to find out saying it was important she knew what they were giving her  and this is when Elizabeth gave consent for me to know as well and shortly after this I was banned from visiting completely.  Trust has therefore been betrayed and in its place deceit and coercion.  This is how I view mainstream psychiatry.     Truth Trust and Consent are vital to gaining Emotional health – without them, the mind becomes a battleground of flailing emotions. “If there is insufficient truth, trust and consent available the victim of the irrational emotion will strenuously decline to examine the cause of the irrationality which thereafter takes on a life of its own”

Frozen terror is applicable in Elizabeth’s case.  “Frozen terror underlies all serious emotional disorders.”  Something traumatic happens to that person that can go back years but memories remain buried that person.  “To remedy fear rational or irrational is to find where it is coming from and remove the danger it portends.

Dr Johnson in this wonderful book explores emotions rational/irrational, examples of how he has  dealt with certain situations and gained the respect of those considered by the professionals as being “untreatable”.   Well Elizabeth is “treatment resistant”  however I know for a fact she responded well to Dr Johnson.

Dr Johnson talks about ECT which apparently Elizabeth has been offered.  To think that I as a mother once thought this was better than drugs –  how wrong I was but I have since become knowledgeable  –  I was horrified to hear Elizabeth was offered this barbaric treatment and if you object under a section, your objections are overruled and you can be given this treatment under a section of the Mental Health Act.   Elizabeth thinks she refused this but one day I turned up at the Bethlem and her face was covered in bruises and to this day I am left wondering what happened to her.  The lead nurse said “I am happy with this” – the ward manager claimed not to have noticed anything.   There have been cases of lasting mental impairment resulting from ECT such as inability to read or tell the time and I spoke to someone once who told me that a huge chunk of memory had gone and she found this extremely distressing.  ECT induces convulsions, amnesia or memory loss.

Yes I agree with Dr Johnson that prison is not the answer for many as how is this going to help someone who is themselves  a victim of terrible abuse which in some cases goes back to childhood.

What a shame not everyone appreciates the good work done by Dr Johnson and in testimony to this there are letters – why should something successful be closed like the Special Unit at Parkhurst Prison  perhaps ifother psychiatrists took his approach there would not be wards overflowing and patients would be treated like human beings which is not the case at present.

Whilst Dr Johnson worked in the Special Unit at Parkhurst Prison for exceptionally dangerous and disturbed prisoners too violent for Broadmoor he reduced the level of violence by 92%, the consumption of tranquillisers by 95%. No alarm bells were ringing for 3 years. His work has been widely reported and formed the basis of a documentary investigation by Panorama on BBC1on 3 March 1997.

Dr Johnson was the independent Doctor for the Tribunal who has given the ONLY accurate report and correct diagnosis which the team choose to ignore.  With the vast  experience of Dr Johnson and the very fact that he managed to earn the respect of my daughter who according to the team is chronic treatment resistant I can honestly say I could not have chosen better for an expert witness and this shows what is lacking today in terms of decent care and understanding for those who have mental health conditions.

Perhaps the team would like to borrow this book which could benefit them all and I would like an honest explanation from them as to why Elizabeth was denied the report by Dr Johnson and why they stick with a label none of them have proven to me scientifically.  I would welcome open and honest responses by the team directly on Twitter rather than the things written in the files which is another thing I am reading right now.  I shall be featuring extracts from all my new books soon which could change psychiatry for the better in my opinion but that is  wishful thinking.  Psychiatry  is mainly about drugging and the care is centred around “business”.   Huge amounts of money are being spent not on care as I can see but Elizabeth is now home and her care in a care home would have cost £60000  a year so how many are on long term sections in untherapeutic environments who are not of risk  to self or others  –  I know of quite a few cases. Elizabeth does not need to be on a CTO either which is a further saving of taxpayer’s money.

Elizabeth is still out with her sister and now I am going to finish this wonderful book which I would recommend to you all.

Elizabeth may wish to write the next blog herself and I am going to take her with me to meet with other “survivors” at the weekend as I have not been around to celebrate her Birthday today and  so will do this at the weekend.

 

I am now nearing the end of this wonderful book and under the heading  “Sociably Sane” is written “when the mind goes wrong it does so because it is being driven not by one but by two intents at the same time, pushing in opposite directions.  Dr Johnson talks about infant and adult survival strategies and how right he is to comment that “those who deny we have any possibility of intent in the first place, by this very decision exclude themselves from any understanding of the painful agonies of mental disease”.   He talks of the problems of continuation of infantile survival strategies into adult life causing many problems.  With Elizabeth  I think this is applicable because it is as though she does not wish to be an adult at times and there is certainly evidence of “frozen emotions” –  when someone has suffered trauma in adolescence and further trauma relating to the care in terms of hospitalisation I believe this is her way of coping – Elizabeth could not cope in the local scheme in the community and was unhappy there whereas at home she feels safe.  Since going away for nearly three years and coming home again Elizabeth is a changed person and is calm – I put this down to not being on such a huge dosage of drugs any more.  One can only imagine how terrible it must feel to be forced to take 800mg Quetiapine and on top of that Clonazepam,  Haloperidal and Lorazepam together with skin medications.  She was clearly having adverse reactions to these drugs but in psychiatry this is regarded as symptoms.  Tonight I have been working with Elizabeth to try and get her motivated to do things herself –  she never refuses.  I am teaching her the basics –  to wash up properly, to iron properly, to throw rubbish away and recycle.  Washing, ironing and cleaning and eating healthily.  I cannot just leave Elizabeth to do these chores and expect them to be done properly so I have to stand with her and encourage this.  She takes it well as she knows I am trying to help and she needs motivation.   It is a good thing that Elizabeth is calm about all of this as some people could react – Elizabeth appreciates the support as it is no use me doing everything for her.  I would not only like her to be able to go out without me but to be able to look after herself.   I am seeing improvement compared to when she first came back.   “Emotional health applies as much to societies as to individuals” – that’s true.  Dr Johnson talks about the importance of independence and I am going to do everything possible to see that Elizabeth gets the help she needs.   Help to go out places as she suffers from Agoraphobia now.  Help and encouragement around the house but I am so lucky to have so many good friends helping me.   I have learned a lot and adopted a difference approach thanks to wonderful books like this. To begin with I had little knowledge of anything to do with psychiatry –   since reading all these wonderful books this has provided me with a much clearer understanding than ever before.

Elizabeth continues to make good progress.  She is taken out regularly by close friends.  Others help towards the blood test essential for her being kept on the chemical Clozapine.  We are still waiting to see the consultant psychiatrist. I am really happy today at the start of the weekend.

This weekend we have a show to go to “Beautiful” – Carol King. I have booked a deal where you get a meal as well.  There is no other plans but I will help Elizabeth tidy her room and encourage her to hoover over the weekend.

My thoughts are on holidays right now and I would like to go abroad and take Elizabeth.  It will be so nice to have Elizabeth with us on holiday as in the past she has been in hospital miles away from home and family.

Elizabeth has given consent to share her note of thanks to close family friend and carer Krystyna who has gone out of her way to help us.

“I have become much stronger in character thanks to Krystyna taking me out places and I’m really feeling much better.  I went into town Friday and was not afraid as usual.  Today I did cookery with Krystyna and she is encouraging me to walk places and I would like to say thanks”

Elizabeth has been out every day this week with my friend and has had her personal trainer round.

Meanwhile Krystyna has just telephoned me with her concerns about Elizabeth.  All the team are concerned about is that Elizabeth is kept on drugs for the rest of her life and they refuse to accept any other diagnosis apart from Schizophrenia.  They have suddenly dropped “treatment resistant” yet she is on a drug for treatment resistant Schizophrenia.   She has about 5 different labels.   Anyway I too am concerned right now –  Elizabeth is complaining of pains to her legs and is very out of breath whilst out walking having to stop every so often.  Elizabeth has complained more than once about pains to her joints and we are very concerned right now.    Elizabeth has also complained about dizziness and double vision to myself and my carers.  We were out on Saturday together in London.   I took Elizabeth to my hairdressers and she looked very nice and had her nails done too.   After that we got a bus to a market nearby –  by the time the hair appointment finished it was too late to do all I wanted to do but Elizabeth need lunch so I took her to a nice Thai restaurant.   The last consultant psychiatrist refused to reduce the drug Clozapine even when asked by Elizabeth. I have been told by experts the dosage is high but no one seems to care. The team care more about getting rid of me altogether by any means.  I know of others on huge dosage of drugs too prescribed concomitantly regardless of them being contra indicated.

The NHS only provides a one off appointment with a nutritionist.  What a shame the NHS only provides 1 appointment, as it would be surely better if they provided more visits and saved money by less drugging   Whilst I am working in a full time job I am lucky to have such good friends who are helping and this is benefitting Elizabeth too who has spent the past few years in hospitals a long way from home where she was not allowed out and appeared to be going downhill not surprisingly when you look at the “treatment” below.    It is benefitting her to be amongst family and friends at home and not in an oppressive environment with others who are seriously ill and Elizabeth said she is happy to be at home.  She is behaving normally without sign of  “symptoms” and now it is over six months at home. Apart from physical conditions have seen and agoraphobia there is nothing to fit the diagnosis of Schizophrenia but Elizabeth would not be fit for work for instance because of the effects of this drug for which no one wishes any reduction to be made by the looks of things.    Here below is an example of the “care” my daughter has had under both NHS and private sector and from this you will see my point about a one off dietician appointment.  It is no wonder there is no money for the NHS with this huge amount of drugging going on resulting in physical illness.  The NHS is wasting money on excessive drugging and without proper tests to see if a patient can metabolize them, thus doing more harm than good to the patient in cases where someone is treatment resistant for instance.

Local Hospital:  750mg Quetiapine; 1mg Clonazepam; 4mg a day Lorazepam;5-10mg Haloperidol; (30mg max)  – skin medications were also given such as Lymecycline –  being on all of these drugs and Quetiapine has also been given at 800mg.

Bethlem Royal Hospital:Clozapine liquid 150mg; Bisoprolol 1.25mg; Metformine liquid 500mg Aqueous cream; Lorazepam 1-2mg; Promethazine 25-50mg; Olanzapine 10mg; Quetiapine 750mg then they reduced it to 600mg – so much for the drug free period promised by Professor Murray!

This puzzles me:

Cambian Healthcare:Clozapine raised to 350mg by Dr A W.  Metformine 500mg – so how come the rest of the chemicals were not given when Elizabeth came home from Cambian –  I must find out for sure.  I complained about the Lorazepam and Metformine which the team said was being given for weight loss but I pointed out to them it was off label.  The GP told me he could see no reason why this should be given and immediately took her off the Metformine quite rightly so.   However I found out that Metformine and Clozapine are contra indicated drugs and should never have been given off label and I told the Tribunal that what they were doing was wrong.   When I explained to two members of staff at Cambian the drugs were contra indicated they looked to the floor.  At this private hospital (Cambian) funded locally I was accused of missing a tablet of Metformine yet I pointed out this and Clozapine are contra indicated so they were in fact doing wrong. I am interested in what the care home are saying that she had been on this large amount of drugs all along for quite some time yet we were unaware of this as we were only allowed short visits despite her being in Wales and only saw Metformine and Clozapine given- no other drugs.  This drug should never have been given in the first place –  It is after all for diabetes.  Surely if my daughter had diabetes the team would have told the family ?  They assured me it was for weight loss and then I found out that only an Endocrinologist could prescribe this off label and for what reason was it given.  Well I have found out why with £1000 worth of private tests and in addition I have found out other disturbing things too.

Care at the Care home:  350 Clozapine; Bisoprolol 1.25 mg; Senna; Lorazepam as and when required.

At the care home I thought Elizabeth was only on 350mg of Clozapine but got a nasty shock when I saw the drugs chart  and when I complained I was told I was no longer next of kin    Elizabeth told me she was being put under pressure by a member of nursing staff to choose between Mum or Dad –  so she was capable of telling me this on not just this occasion.  I can confirm what was going on there now as I know everything having acquired all the files and £1150 per week is being saved to the taxpayer.  “who does she want to visit?”   –  well Elizabeth wants to see both parents and nurses should not be getting involved in family relationships and I was amazed that the person carrying out an investigation into my complaint said that this was standard practise but I would point out that there are no nearest relatives if someone is not on a section so it looked to be like something was happening there and I was absolutely correct and no delusion on my part.

We were given so much attention by the home treatment team who would not stop visiting but they carried on regardless and writing their reports – which I now have.  Some of them asked intrusive questions and I was quite right to think they were reporting back everything.  There was no need for their continued visits as they had done the titration of Clozapine so they were not offering any help – it was harassment – phone call after phone call, visit after visit “go in twos”   “record everything that mother says”.   Well there is no need to record everything as I am writing in a very honest and open manner here on my blog which I hope Elizabeth will take over one day.   It seems unfair that we got so much attention when it was not wanted when others are crying out for attention and help.

We are now waiting for an appointment to see the new consultant psychiatrist to transfer to another team but I am sure I will know people in that team.  In the local area the A&E and Maternity wards have closed.  It would save money if they cut back on the level of drugs given to my daughter who is treatment resistant but too much emphasis is put on risk to self or others when no one cares what harm they are doing to my daughter and I thought a psychiatrist must  DO NO HARM.  As you can see concomitant prescribing  at high level – max dosage of Quetiapine and Olanzapine – these two drugs given together at the same time.  These  drugs are not making my daughter better they are causing harm to her and now I can see everything and nothing surprises me – the long term drugging of patients causes harm and this should be investigated – I know that patients are taken off the drugs in a horrific way if for instance they develop a blood disorder or serious condition. The drugs are for one purpose only – to control someone –  I am pleased to say Elizabeth is starting to open up since coming home and talk to me about past experience without any prompting from me at all.  I have learned a lot by reading the correct books which should be read by everyone in the profession as nothing is being done properly.

Emotional Health by Bob Johnson (what are emotions and how they cause social and mental diseases)  I wish there were more consultant psychiatrists like Dr Johnson and this book has given me a greater understanding.  (www.TruthConsent.com

“the emotions described in this book are the real thing – and they can be deadly.  However, nothing written here excuses nor remotely justifies any atrocity but if we don’t look at the reasons why they occur, we can never prevent them happening again, and again, and again and again .  If we do, we can.”  sychiatrists are taught that emotions don’t matter and I agree with Dr Johnson that emotions need to be understood and- how right he is.      I would thoroughly recommend this book to all students of nursing, psychology and psychiatry.  I would also recommend it to patients to read and parents.

I am waiting for one more book to arrive by Dr Moncrieff – I wonder if these brilliant books are available in the library as they should be – another person I am in touch with said he had difficulty in getting a book by Dr Peter Breggin in the Library –  I must go down to the local library to check on this.

In the press I have noticed some interesting articles:

–  NEW STATINS BOMBSHELL – medical experts angry that doctors will be paid to prescribe the controversial drugs to anyone at low risk of ever developing heart disease – could mean 1 in 10 adults put on regular doses.  Well I am not going to be one of them.  If these doctors really cared I would challenge them to look at Elizabeth’s drug of Clozapine and assure me they are doing no harm.  I thoroughly agree with the fact medical experts should be angry but the term “angry” is something I could never describe myself –  you should see what has been written about me!  “part of the doctors’ complex funding depends on meeting Government targets.  Well Elizabeth and I do not want these drugs that is for sure.  In the Prescriber Journal it is warned statins do nothing to increase life expectancy for low risk patients.  Health Professionals have until Feb 23 to send comments to NICE.   Congratulations Sunday Express for this wonderful Article however  there is another article featured about Dementia cure within a decade and I am cautious about this when Alistair Burn’s – clinical director for the brain disease (NHS England) mentions drug – Aricept slowed down the process but when my father was taken off he rapidly went downhill and ended up in a wheelchair.

Daily Mail:  NEW WELFARE CRACKDOWN ON WORKSHY

So David Cameron is determined to ensure welfare is no longer a “lifestyle choice” .  Well Mr Cameron how about rewarding the carers who devote more than normal working hours looking after those who are severely disabled.  A paltry £65 a week does not go far does it?   Why should someone have a label in order to get disability benefit.  Elizabeth is at home now and no longer is the cost of £1150 per week paid to a care home.  In addition I have further saved money by avoiding the team putting Elizabeth unnecessarily on a CTO.  As a taxpayer myself I would like to know how much this cost??  There  are no symptoms so no need to put her on a CTO – so  I am lucky thanks to close friends and family to be able to work but many cannot and you are doing nothing about those who care for others which is more than a full time job and I would know because my father had Alzheimers.  Re my daughter, sadly she is so drugged up thanks to 350 mg of Clozapine which is not recommended for the diagnosis of PTSD as I do not accept Schizophrenia or paranoid Schizophrenia – show me the scientific proof – there is evidence for PTSD and I wish to know why this diagnosis being ignored when the report, denied to my daughter by the team is 100% accurate and perhaps you and other politicians should investigate the huge amount of taxpayer’s money being wasted under the NHS through drugging long term of psychiatric patients and as for my daughter if she was not on the level of drugs and this particular one maybe she could have a job so this is where facilities need to be provided like Chy Sawel and reductions done on the high level of drugs in a proper humane manner so that people like my daughter who are not happy with being labelled or drugged can have choice.  There is the expertise in the UK to be done and I and other mothers are fed up with the shocking care in this country and if you wish to look at savings in money then psychiatry is an area that needs close attention.   Whilst writing I would point out that I am far from happy with the DWP –  Elizabeth has been in “care” – the Royal Bethlem, private sector Cambian and a care home and now she is home and thank goodness for that as when I saw the drugs being given I was absolutely appalled.   I was also appalled to read all about what has been going on in the name of “care”.   Anyway I am appealing against their decision –  people who sit behind a desk have no idea how disabled people are coping and what support they need and instead of refusing help to the point of making some desperate they should come and visit that person.  Not everyone can come down to their offices and they should appreciate that.  I do not think anything is being done fairly in the UK.   What you should be doing is cutting back on the drugging of psychiatric patients and providing more therapeutic care as the “care” of drugging is not working for everyone.

Also featured in Daily Mail – Elderly “illegally restrained in care homes”   –  well I think this should be made illegal under the mental health.  If someone is not posing a threat to others and may not wish for instance to take the drugs by injection then they should be respected.

As for Deprivation of Liberty – is this supposed to be a civilised country!    This is more like the dark ages.  Most people would wish to be in their own homes and most have capacity – they should not be subject to  bullying and harassment that goes on when social services wish to force someone back into care and they do this by any means such as depriving a drug like Clozapine for nearly four days.   All of this is costing a fortune – thousands are being spent on every court case.   Whilst you are looking to cut benefits I can prove to you where the money is being wasted.  Elizabeth has capacity and did not want to go back to the care home where she was expected to choose between parents as next of kin when not even sectioned or on a CTO.  I have saved money by having Elizabeth home and without support.  The care home were already calling her father next of kin and refused to release the drug Clozapine or speak to me over the phone saying I was not the next of kin.   I am sure you will agree that this needs to be urgently addressed.  As Elizabeth is ‘treatment resistant’ it could be that she cannot metabolize the drugs – then this treatment is a complete waste of taxpayer’s money.

Message to the Team –  you are supposed to do no harm –  here are Elizabeth’s comments  “I will be glad when its all over Mum – I wish they would leave us alone” .   Elizabeth is just one case – there are many; more suffering and parents who are heartbroken who have their sons and daughters on never- ending sections in the UK.

I would like to feature one such group of patients/former patients/parents and a group who wish to change the NHS for the better and also care in the community.  These are the people who should be listened and their ideas taken on board such as Crisis Houses and then there are the mothers and fathers of patients, (parents of some patients whom are incarcerated long term at huge expense to the public unnecessarily) who wish to see holistic care and minimal drugging and centres like Soteria and Chy Sawel set up along with Open Dialogue – this is something the SOAP Group would like to see along with an end to the barbaric treatment of ECT.   I would like to see choice as everyone is different.  Some like my daughter are unhappy to be labelled and no wonder why when you look at the files and see so many of these labels along with the effects of the drugs etc.

Message to Mental Health Cop   –  I wish you would stop calling acute wards “safe” places –  well in my opinion that is not the case.  They can also be traumatic for some and untherapeutic and should not be used long term.  If only there was open dialogue and emphasis on nutrition as the best thing about the private sector was the food was better.

The Avengers Fights Back wishes to accumulate stories from people who have experienced mental health services in order that changes can be brought about.

The SOAP group wishes to bring awareness and campaigns against forced treatment of patients and ECT but both groups and others I belong have one thing in common and that is to see improved care under Mental Health and I  have pointed out a few things above and throughout my blog.

I would also like to commend SWAN  – Social Workers Action Network –  you have the right idea and I would have no complaints with your agenda for change.

 

Anyway we await an important meeting with the new Consultant Psychiatrist  hopefully this week –  Elizabeth did not want to be in last time but I understand in order to see the new consultant psychiatrist we have to go to their premises and so I will have to take a day off to come to this meeting with my carers and Elizabeth.   Elizabeth wanted to go out last time but all we wish to know is the new procedures under this team who will be taking over.   I will let you know how we get on with this important meeting in due course – it is essential that this meeting is arranged soon due to concerns regarding Elizabeth’s physical health.

 

 

 

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