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Another meeting on Suffolk Ward before a team of 6, including RC where all were stating that Elizabeth did not give consent to share information with me.   I’d taken a day off where no one wanted to speak to me or give me any news.  Elizabeth was not encouraged to come in with me.

Present was RC, Clinical Psychologist plus care coordinator and two other doctors plus advocate.

Elizabeth has not been allowed to go out anywhere off the ward with me for many  weeks but on this occasion just 1 hour was granted.   We went out for lunch then I went home.  Whilst out with me, Elizabeth was more than happy to share every bit of information which is contrary to what I was told by the team that she did not wish to share any information.

I said to the ward manager Kirk Hopwell that what is needed is openness and transparency and inclusion in the local system of care which could only be achieved by way of “Open Dialogue”.

I suggested at the meeting that Elizabeth liked anything to do with music, animals, art.   When I mentioned about a music project I had heard about this was the most positive thing about the meeting.

I wrote a letter at the end of the meeting with a few other comments as I feel that thought should be given to the staff employed to work with Elizabeth. There was once a brilliant support worker who was helping her who I was very impressed with plus someone else who could also help but has limited time but nevertheless – 1 day could help specifically with certain things which I pointed out.

I was told the team wanted to work with me but so far all they have done is work against me.  That awaits to be seen.

I would like to say more about what I am currently going through but I cannot right now.  It is like living under a cloud.

 

 

 

 

Back in April 2014, Elizabeth had leave from the care home and I took her to Woburn Abbey but we had to leave early as she was feeling ill. She appeared highly anxious, felt dizzy and could barely walk.  She could not relax or enjoy the day out.  It is not the first time I have seen this and been concerned for her physical health.   It was a beautiful hot sunny day yet when we arrived home Elizabeth complained of feeling cold.   She put on a thick winter coat and scarf and sat out in the garden, her hands like blocks of ice.

I returned her to the care home but, following her return I experienced difficulty in contact which I was later told was due to a bad signal in her room.  I was concerned that she was in bed by 6.00 pm.  Something did not feel right.  On a previous visit home, Elizabeth mentioned a nurse putting pressure on her but would not emphasise further.    So I arranged another weekend’s leave and her booked in for an appointment to see an Endocrinologist.   I was interested to know why she had been prescribed 500mg Metformin off label at the Bethlem Royal Hospital. The team said for this was for “weight loss”  but I knew this was contra indicated. These drugs continued to be prescribed whilst at Cambian and I knew the  drug Metformine was for diabetes.  The GP in Wales was also not sure why she had been prescribed this but was told it was for weight loss.

8th May 2014: –

Elizabeth’s sister collected her from the care home hundreds of miles away and she stayed with her grandparents. The next day we saw the Endocrinologist but when Elizabeth showed me the drugs chart I was not happy.  There seemed to more drugs prescribed than I could remember previously.  All we were given was Metformin and Clozapine whilst at Cambian but she was granted hardly any leave and had none at all whilst at the Bethlem Royal Hospital.  Now suddenly there appeared Bisoprolol, Senna and Lorazepam (as and when required) on the drugs chart so I telephoned the care home but was told  “we are not speaking to you any more – Mr B is next of kin”.    I then asked a firm of solicitors to investigate and their findings led back to the local social services department which did not surprise me, as it was this department who had made repeated attempts to displace me as Nearest Relative in the past.    As Elizabeth was discharged from Cambian not on a CTO and I thought they might be trying to arrange a CTO or do something worse like restrict contact and make further attempts to displace me once again and I was correct.

9th May 2014 –

The Endocrinology appointment went well and I was rest assured that I would soon have the results seeing as this was a private appointment.  Elizabeth’s supply of drugs from the care home would run out on Sunday 11th May.

 

10th May 2014

Elizabeth said that she was no longer happy at the care home due to a nurse putting pressure on her to choose between Mum and Dad.   She said she did not wish to go back so I told her that since she was not on a section that she did not have to go back and could stay at home if she wished.

Sunday 11th May 2014 – Day 1 without the drug

I was due to take her back to the care home.  Drugs would run out that evening and I had spent most of the day on the phone talking to Crisis/Home Treatment Teams, NHS England and emergency out of hours social services, none of whom could help me and advised me to return her back to the care home. Eventually I spoke to the Manager of the care home but, despite offering to drive hundreds of miles there and back to collect the drugs, he refused to give them stating “it is more than my job is worth”.   I knew that if I returned Elizabeth she would be sectioned.   That evening I drove to two local hospitals to try and get a supply of the drug Clozapine but failed to do so.

Monday 12th May 2014:   – day 2 without the drug

I took Elizabeth to the local GP and got her registered. I obtained a prescription for the Clozapine but nothing prepared me for what was about to happen next.    Whilst at the Doctor’s surgery, the social worker called demanding I return Elizabeth to the care home “get her back we are paying for that”.  I refused because Elizabeth said she did not wish to return there and refused speak to the social worker on the phone.  Later that day I received another call from the Manager of social services who again demanded her immediate return to the care home and said I would not be able to obtain the Clozapine anywhere in the local area.

I had already taken Elizabeth to the local hospital where she had undergone the blood test necessary in order that Clozapine can be prescribed.  However, when  I presented the prescription to the Pharmacist we spent hours waiting until finally be refused to prescribe the drug.  He mentioned his conversation he had with the Manager of Social Services and said he could not help me, his excuse being that he could not get hold of a Consultant Psychiatrist which was necessary in order to prescribe the drug. I felt sorry for Elizabeth as we had spent all day waiting in that hospital but I was determined to get her to see a consultant psychiatrist so we then visited the mental health.  We again waited a long time, until finally a consultant psychiatrist saw us along with two other members of staff.   By this time it was late evening.  I was advised by him to take her back to the care home.  He said there was nothing he could do and that as it had been over 48 hrs, she would need to be retitrated from scratch.  I said that this was not true as it had only been c26 hrs without the drug but he refused to listen.   We had no choice but to leave the hospital and come back home without the drugs.

 

 

 

Tuesday 13th May 2014:  – day 3 without the drug

We again visited the local hospital Mental Health Unit in order to speak to the Director of Mental Health to see if he could help.    I was getting concerned now at the length of time Elizabeth had been without the drug.  She was becoming drowsy.  It was not fair on her that she was having to sit around waiting hours only to be refused the drug time and time again.    We were this time waiting a long time to see a member of the social services team in order to do an assessment but then we were given the news by the Assistant of the Director of Mental Health that he could not come.  It was midday by this this time, so I ordered a cab to Harley Street where knew we would get to see a private consultant psychiatrist immediately and hoped he could help us.    On our way there I received a call from the social worker who failed to turn up and explained what we were doing and that I would be left with no choice but to take legal action individually against him and two others who appeared to be standing in the way of “treatment”.   Whilst I am not happy with the  “treatment” of my daughter who is mentioned in the files as being “chronic treatment resistant” and on a last resort drug (Clozapine) in this respect, I knew that if she was left without the drug much longer she could suffer injury.  I had to extend my holiday in order to deal with this problem.  I had been in contact with someone that day who is an expert on the drugs.  He advised me that if this situation was to continue any longer this could result in injury.  The rest of the family were pressurising me to return Elizabeth back to the care but this was against her wishes – why should she return only to be sectioned by the team and all the team cared about was her compliance to the drugs yet there was no problem in this respect. Elizabeth was becoming weakened by the deprival of this powerful drug but it was pointless me driving hundreds of miles to collect it when I had already been refused. On coming back from Harley Street where I had failed to get the drug, I telephoned lots of different firms of solicitors to obtain assistance for myself in this matter.    One major firm of solicitors had spoken to Elizabeth and the next thing I knew they were appointed by her but I still continued to look for representation myself, making phone call after phone call as the matter was now urgent but no one could help me immediately.

Wednesday, 14th May 2014:   – fourth day without the drug.

First thing in the morning the social worker contacted me wanting to come round to see Elizabeth together with a Consultant Psychiatrist.   Perhaps the threat of being taken to Court by me was enough for them to act.

That morning I had made a further attempt to get the drug from the local Lloyds chemist.  The Pharmacist was constantly on the phone.   He had no doubt been speaking to members of the team and the outcome was he said he was could not help me.

When I advised Elizabeth that the social worker would be coming at midday she said that she did not wish to see them as she was not feeling well.  She was by now experiencing withdrawal symptoms and described the effects to me. She just wanted to sleep and I had to really persuade her to come downstairs, explaining the importance of their visit.  The social worker arrived mid-day with the Consultant Psychiatrist and I was immediately asked to leave the room so Elizabeth would be alone with them.   I believed they wanted me out so they could do a capacity assessment but I refused as I did not feel this was fair on Elizabeth who was not feeling well having been deprived of the drugs for several days.  The capacity assessment did not therefore go ahead.  The consultant psychiatrist was left to explain about the titration process and how this would involve members of the Home Treatment Team coming to my home twice daily to monitor her.

That evening was the start of many visits by the Home Treatment team.  They would come mainly in twos, would check her blood pressure and administer the drug.  This meant that Elizabeth and carers had to be at home practically all day which was very restricting for her.  Sometimes they would arrive at midday and again at 6.00 pm.  It was because of this that I eventually requested that visits be reduced to once daily.   Bearing in mind I work in a full-time job, I had to rely on many close friends for help and support. They would come and spend all day with her.  A close friend reported back to me that she had overheard a nurse saying “it won’t be long before you go back to the care home and that her social worker was coming to get her”.  It was obvious they were trying to get her back.  Questioning by some members of the team was becoming more and more intrusive.  It was as though they were recording everything.    So, having agreed to once daily visits, the team then tried to take away the supply of drugs to resume twice daily visits which we had to complain about.   Several letters from social services addressed to Elizabeth were either posted through the letter box or handed to her via the Home Treatment Team who seemed to be used as messenger service.   On one occasion, whilst I was at work, a social worker came to the house with another member of the team and they attempted a capacity assessment in front of my carers but Elizabeth did not wish to co-operate. Elizabeth had given her carers notes by way of written proof that she wished to be at home but this was not enough for the team.  Suddenly we received Court papers that we were being taken to Court of Protection.  They wanted to sever contact/deprive liberty and section her (according to the files I have now acquired).  Elizabeth Suffers from Agoraphobia not having been out much in three years and despite this being a crowded environment she handled it very well.  Elizabeth also had a fear of heights and we had to go up to the fifth floor of the court by lift. I had to arrange private therapy for her to be able to attend court.  Whilst Elizabeth had obtained representation I had none, due to the cost for which I was quoted around £900 per month.   I was not entitled to legal aid.  Following Court, months later we were still waiting for the outcome of the court Hearing but there was no news so in the presence of Elizabeth, I telephoned her solicitors to find out when the next Hearing would be. We were then told that it was unlikely matters would be going any further and that the only thing left to settle was the solicitor’s expenses.  There was no mention of anything to Elizabeth, not even her fares have been reimbursed.  If the Council had been successful in the Court, they would have destroyed my family and affected everyone therein.  Elizabeth and her sister were terrified of the prospect of their intentions becoming reality and did not wish to answer the door on one occasion.   Elizabeth has seen the files which portray the family in a very nasty manner.   Elizabeth has not wanted to see the team since reading these files and who can blame her.   My carers feel the same way, especially in light of serious allegations which I cannot mention at this stage.

Titration of Clozapine is very risky and I can see from the files that Elizabeth suffered high pulse rates which “was of some concern”  They titrated her back up to the 350mg she was previously on and requests from both Elizabeth and myself to reduce the drug was ignored by all three psychiatrists involved.  The team ignored chose to ignore the fact that Elizabeth was suffering with what appeared to be signs of Tardive Dyskinesia.  When walking she would make jerky movements with her arm and she constantly complained of dizziness.

When Elizabeth told the Home Treatment team she no longer visits they ignored her and continued phoning and visiting regularly. It was noticeable that some team members had name badges back to front.

Both Elizabeth and I requested the medical files which we eventually received, the contents of which are shocking.  No wonder they did not want me to see them.  Apparently we were regarded as a “special case” and that the Home Treatment team ordered to go in twos and report everything back.

Words such as  “aggressive” and “hostile/angry” are frequently mentioned which is totally untrue.  There were even worse insults towards me. For instance certain members of the team tried to arrange a MHA assessment on me using my GP. It is not nice when the team pick on the appearance of my daughter and make awful comments.  Everything stated in the files was a means of discrediting me, in particular, the family and home.  I even called the Police due to the harassment we received.  The Police visited and commented that I had a nice home but that there was nothing they could do.

A new social worker has now been appointed.  To this day, we do not even know the name of the new Psychiatrist.  The transfer of care has not gone ahead as Elizabeth did not want to attend a prior meeting with the social worker and a nurse.  She was denied the chance to see just the consultant psychiatrist.   None of my carers wish to serious allegations on which files are missing.

It has been a year now since Elizabeth came home.   She continues.  We have no support but she continues to do well.  Elizabeth has a personal trainer that comes to the house twice a week which I pay for.  This is helping regain her confidence but she still will not go out anywhere alone and suffers panic attacks.  It will take her a long time to recover and she is now disabled in this respect although in the home she can manage well herself.  Elizabeth has recently done a jewellery course which she enjoyed and at the weekends I do my best to take her out as much as possible.  I have taken her to my conferences/courses and meetings with former patients who have acted as peer support.  It is good for Elizabeth to see that there are some wonderful professionals who wish to see changes as at the ISPS and INTAR conferences.    The support we have had is from close friends and from the former patients themselves.   Elizabeth is free go out as she wishes but sadly is a prisoner of her mind, too afraid to venture out anywhere alone due to the agoraphobia and feeling dizzy whilst out walking.

I have taken Elizabeth out with me in huge crowds but I notice there are good days and bad.  She is improving as when she first came she felt physically ill and sometimes refused to go out. “Schizophrenia treatment resistant” is just one of several diagnoses given to Elizabeth.  The team choose to ignore two others such as Aspergers and PTSD.  I would like Elizabeth referred to experts in the field of Aspergers and PTSD but this has not been done.  Right now “Schizophrenia” is being questioned by leading experts as being a “valid” diagnosis and “treatment resistant” means “poor or non-metaboliser.     I have therefore turned to leading experts in Rotterdam who have agreed to carry out metabolism tests as we have seen adverse reactions more than once. (results since then are poor/non metaboliser of psychiatric drugs) Also, no one cares about Elizabeth’s declining physical health and wish to keep her on drugs for the rest of her life so having these tests done should lead to a lower dosage or complete review.     I have asked for a referral from the GP but do not know if this will be possible as yet and I have been told I may have to pay.

Elizabeth has been on maximum amounts of concomitantly prescribed drugs which have led not only to adverse drug reactions which can easily be mistaken for “symptoms” of so called illness but more and more different labels were given.    I think it is  important for more accurate assessments to be given before putting someone on anti-psychotics in order to see if someone has any underlying physical conditions and whether they can metabolize the drugs.   Endocrinologist appointments should be given as a matter of course – there could be other reasons why someone suffers from psychosis. I would obviously like my daughter on the very least amount of drugs as do all the other parents who have sons/daughters’ stuck in the system on never ending prison sentences. Such patients can be sent to secure units and locked away when they have not committed serious crimes and “sentences” can last for years on end causing disablement and some never get out of the system as they are too weak to challenge things or even pick up the phone to speak to solicitor.  Solicitors do not go near such patients and represent them properly so I have seen.  I think this is  terrible and an abuse of human rights to drug someone for life ignoring underlying  physical conditions.  The only way such people are incarcerated for life is down to convenience as they could not cope in the community and even in care homes patients are drugged enormously and no one is properly looking into this fact.   I believe no one should be written off and Elizabeth is proof that home is the best environment but patients are sent to care establishments in order to control them and this is done by giving them huge quantities of drugs – just continuing what kind of “care” you would encounter on an acute ward where a patient admitted who is disturbed will first and foremost be drugged and where restraint and other forms of “treatment” such as ECT are commonplace.        Drugs are raised to maximum levels and prescribed concomitantly on a trial and error basis.    Patients can end up becoming inured through wrong treatment and this is why it is important that accurate tests are carried out prior to prescribing the drugs.

I believe the answer to the current situation is Open Dialogue.  Open Dialogue is supposed to be available for everyone now but that is not the case as you are excluded if you are in hospital – regarded as an acute case or already have a MH team involved. It is run through North East London NHS Trust called “Dialogue First”.  Care is not working and this can be seen with overflowing wards. Parents/carers are often excluded and if you dare to complain you can get bullied by restricting contact or even attempts to sever contact altogether.   I believe that P450 liver enzyme tests should be given to patients first before prescribing in order to determine the accuracy of treatment. This could save money to the NHS and benefit the patient and I believe that drugs should only be prescribed at minimal doses.

There is no choice in care and an acute ward is not therapeutic and can be noisy and frightening to some.  I believe that there needs to be choice available in facilities, some offering specialist care for PTSD but not in prison-like institutions like some of these hospitals are all about.  To avoid patients going to acute wards they should only be used as last resort then there needs to be something like Healing Homes or Care Farms.   I would also like to see an end to forced treatment of restraint/injections and ECT which I think is barbaric and there should be more therapeutic treatment on offer. Advanced Declarations are ignored which is very wrong. I believe that peer support is so important and that if Open Dialogue were adopted then former patients themselves, where possible, should be included.  There are cases where a patient can avoid hospital admission and only former patients could really understand what they are going through.  There are many who wish to be involved and help others but former patients are often ignored the same as carers are.    I feel that in some cases there are families who really do care and want their sons and daughters released from never ending sections.  I believe that it would be cheaper to increase carers allowance to such families and give direct payments and with the open dialogue approach this could see an end to the current situation of overflowing wards and patients being drugged forever.

I would also like to mention that vast sums of money as much as £12500 per week is being spent on private sector hospitals owned by multi billion dollar corporations and the Elizabeth has not benefit from any of this private all for profit treatment.  For that money you would expect proper assessments to be given and there not to be shortages of staff leading to patients not being allowed out.  Such places are little more than prison and they are just drugging vulnerable people and holding on to them for years trying to make as much profit as they can.  All this is being paid for by the taxpayer whilst NHS wards and other services are deprived of funds.

 

 

Now on a Section 3 against my wishes Elizabeth is on Suffolk Ward the most restrictive position she has been on so far.   She was doing so well after so long in the wrong environment under so many different wards and hospitals all over London and mainly drug free but on this occasion Elizabeth was starting to show signs of distress.

The scheme is being kept open with no other options and dictated by what social services demand.    The freedom Elizabeth sought sadly has disappeared and her mind is now suppressed by drugs.  When someone becomes “unmanageable” on the wards, too demanding, confrontational this was bound to happen but in this kind of environment I can appreciate how patients can be confrontational as some are not even let out.   Elizabeth was in a better position before but now she is in a terrible situation and a section 3 can lead to long term imprisonment and forced treatment of the same nature she has had previously under Enfield of enormous quantities of mind altering drugs.  I am very concerned at what they are going to do next.    She is only allowed out half an hour a day and this is after well over the section 2 period and according to her apology her liberty was infringed upon so I see.  Because Elizabeth is not allowed out to go for walks she is gaining weight and it is not healthy.    Before when she was on Section 2 and made voluntary she could go out for two hours a day.   My concern now was on hearing from a close family friend who visited today that there were disturbing incidents on the ward concerning Elizabeth.     Another patient unwell kept shouting at her calling her “devil” – was coming up to the table and a lot of harassment from this other patient.  This prompted me to telephone the ward and report my concerns but what can staff do in the situation.    Elizabeth has well and truly settled down now and no longer hyper, confrontational.   What has happened today only reinforces my view that this ward along with every other PICU/acute ward is the wrong environment and costs around £900 a night.  Quite frankly I’d rather she be in a health farm or a nice hotel with a swimming pool would work out cheaper.  No longer any risk the environment is not the right one to get well and every other doctor has confirmed this to me and agreed with me.

So my dispute is and always has been diagnosis and deprival of assessment for the other diagnoses.   When you make suggestions you get ignored and yet the money is being spent on yet another facility that is a locked ward/PICU with disturbed patients instead of a peaceful and quiet location and such wards can be frightening.   Fights and disturbances break out all the time and when that happens a patient is forcibly injected or put in the seclusion room and then transferred to another private prison like facility.  However Huntercombe have diagnosed Elizabeth with Aspergers and I have kept the recording of Elizabeth’s voice and she was so happy.    I believe the report I have going back to 2013 by Dr Bob Johnson to be correct and that the correct diagnosis is “Selye’s Generalised Adaptational Syndrome.    It is horrible to be in this situation of not knowing what is going to happen next, Elizabeth does not have any leave except for just half an hour and that is barely enough to go down to the café from where she is situated.  I think it is truly horrible the way people are treated under MH, not just the patients but parents/carers etc.  If only there was more openness and honesty under the MH system and inclusion.  They system is all wrong.

The other day on the ward Elizabeth was upset as she felt a nurse had prescribed or tried to prescribe double the dosage so I went with her to write down exactly what she is meant to have and at what time and what dosage.   Today I laminated that copy, drove down to the hospital and gave her this and some healthy drinks.   Elizabeth was out for her half- hour break so I did not get to see her.

It has been a truly awful experience and whilst Elizabeth came home so well she needed ongoing counselling.   In these schemes it is not like someone can just relax and be free to do as they like.  There is a medicine room – drugs are given by support workers.  Elizabeth was on Lorazepam but this is addictive and clonazepam is still being given on Suffolk ward twice a day.     It makes her very drowsy and Rispiriedon also given twice a day.  It seems to have stabilised her as she was quite distressed.   It is good that she is taking an interest in what they are doing with the drugs.

The other day Elizabeth said I wish I could get away from here and have a nice holiday.  I told her that next year was a very big family occasion.  Next year abroad will be a family wedding and I hope that Elizabeth will be a bridesmaid at this special occasion.   Practically all my holiday has been taken up with appointments etc when I had hoped that this year would be a happy year but it has not been at all.   I just hope things get better.

 

I telephoned social services Enfield (Sandra Muschett) and she said she did not know details of the preliminary court Hearing today.  By late morning I still had not heard anything.  I then decided to phone the London Borough of Enfield Legal Department.  The switchboard operator said she could not give out numbers to me but I told her I needed to know where the court Hearing was going to be heard and it was late morning by this time and I knew it would be some time in the afternoon.   It was about midday and I suddenly heard from Sandra Muschett that the Hearing would be in London Royal Court of Justice but she did not know which court –  she gave me the time and I quickly made my way up to London.

I arrived early at the Royal Court of Justice and I went to the reception in the main hall to find out where the court Hearing would be heard.  The receptionist wrote down on a piece of paper where and I checked my messages to see if I had heard from social services where this would be held but there was no notification.    I waited outside the court which I had been given details of.    The Clerk to the Court spoke to me and I had brought papers of previous Hearings and things that I had just quickly thrown together as there was no time to do anything.   I had not been able to get any solicitors at such short notice and I am not entitled to any Legal Aid as Nearest Relative.

I was called in to see the Judge and they made further enquiries as they did not seem to have the details and a check was made to see if the Hearing was taking place elsewhere but nothing showed up.

I had presented the papers to the Judge who was very nice.  I was able to speak to the Judge personally which I do not recall doing at the least Hearing.  I could not bring Elizabeth with me – the Section 5.2 expire today and this has gone on to a Section 3 now which I objected to because of the fact that Suffolk Ward have dismissed the diagnosis and recommendation from Huntercombe –  they clearly do not want to provide an assessment with more specialist care.    On this acute ward there have been some pretty serious incidents.     A fire the other day where someone was smoking in their room, Elizabeth has been beaten up by another patient and hit around the head constantly in the yard outside so a member of staff told me.      That was why she was transferred to Trent Ward Edgware.   Another acute ward where it was noisy and volatile.   She’d also been on private sector Cygnet Beckton and last of all Huntercombe who put her back on medication and now Dr Helen Moorey and her team of psychiatrists want to “treat” my daughter for paranoid schizophrenia completely ignoring what Huntercombe had to say and their recommendations which I have in writing.  It was good to be able to show all this information to the Judge today but I puzzled as to why social services had not turned up when I had been given the correct information in writing.  It was listed late apparently so I did not question the fact that anything could have gone wrong.  I stopped to visit the Citizens Advice Bureau on my way out.  I then made my way back home but when I got to Oakwood I noticed I had a call from Elizabeth and she had asked for some Chinese food which is her favourite.  I stopped off to get this.

I then made my way to the hospital taking with me some drinks and fruit.

When I got to the hospital I asked if we could sit in the quiet room.  Suddenly there was a knock on the door and a member of staff said that Sandra Muschett wanted to see Elizabeth alone.  I wondered where her advocate was as this was quite late in the day but I wanted to see Sandra myself as why didn’t she let me know where the court Hearing was taking place?  I was left to make enquiries and rush up to London myself and then went to the wrong court but did see the Judge and was able to present papers and even speak.

When I questioned why Sandra could not see both of us together –  after a while she came to the quiet room.   Sandra had a General Form of Judgement or Order in her hand and told Elizabeth that “the London Borough of Enfield are now her Nearest Relative” and that I had been displaced by them.   I was told to get myself solicitors for the next Hearing.

It is not true (as mentioned on this Order) that I was notified by letters that this application was being issued today at all.  I only got a phone call right at the end of the day yesterday – too late to do anything about it.

So now I am having to arrange another day off shortly and hope I get to find a lawyer in time for the Hearing as otherwise I will be unrepresented as I was last time.

I am going to contact the Court and various Judges so they are aware of what has happened.

 

 

“If Elizabeth is sent back to a specialist unit, they can claim £13,000 per week, as opposed to £7,000, so it is to their advantage.
You are right to be worried, as this can only lead to more medication, which she will then eventually have to be weaned off.
As to her attacking, whilst difficult to cope with, all it shows is that their present ‘treatment’ is not working as this is a reaction to her dire situation.
I hope you get somewhere with Press, as revealing appears the only check/oversight and thank you for mentioning the information here.
Please let me know what happens and wish you all the best in the circumstances
Finola”
That is a lot of money for the specialist unit and this could be why the team in ENFIELD wish to keep her where she is on an entirely unsuitable ward (Suffolk) where she has been beaten up by another patient and constantly hit around the head so I have been told by a member of staff.   She has been forcibly injected.   What kind of treatment is this!   Also RC Dr Kunal Choudhary said that if she did not choose her Dad as next of kin she would be thrown out on the street homeless” .  What is the point of putting her back on huge dosage of drugs that do not even work as she cannot metabolise them as proven in the P450 liver enzyme test.   I do agree that Elizabeth should take minimal amount of drugs and could function on these but in a hospital setting Doctors do not care for the physical wellbeing of their patients on a psychiatric ward especially if they have a diagnosis of Paranoid Schizophrenia but now Huntercombe Hospital – Dr Ahmad and Ramadani confirm Aspergers and treatment seems to be different.
Anyway I was today advised Section 2 coming to an end on Sunday.  I received a call from Sandra Muschette AHMP based at 65cPark Avenue, Bush Hill Park, Enfield.  She asked me if I had objection to Section 3 and put it in such a way there was no choice in  as it was felt by Dr Moorey and Dr Al-Allaq that Elizabeth has Schizophrenia and needs “treatment”  however she is already medicated and not causing problems but what we as a family are upset about is that they have totally ignored the most recent diagnosis by Dr Ahmad and Dr Ramadani from Huntercombe as well about three other local doctors mentioned in the files.  If Elizabeth needs continued treatment I believe this should be further explored as the environment of Suffolk Ward is far from right and neither was Cygnet, Cambian or Huntercombe.  To be imprisoned and not allowed out, cooped up and “punished” – this is supposed to be care?    If someone who has been terribly abused under their scheme in the community called Moti Villa situated in the Ridgeway they needs compassionate care not enforced drugging and abuse.
This social worker (AHMP) was recently involved in safeguarding and she said she would be imposing some section 5 to stop Elizabeth from going out and she would be seeking to displace me on the grounds of being unreasonable as NR – here we go again!  How many times have this department gone to court – about 6 times now.  I have no doubt of their huge powers especially when they do not like you. THE TRIBUNAL“YOU ARE NO LONGER THE NEXT OF KIN” – “WE’RE NOT SPEAKING TO YOU ANY MORE – MR B IS NOW NEXT OF KIN”HUNTERCOMBE ROEHAMPTON AND THE FAILED TRIBUNAL
Elizabeth has told a few people that she has been told that paranoid schizophrenia is the diagnosis and this is hereditary.  Please can Sandra be more specific and provide evidence of this – to whom does she refer.
I had two calls from her today whilst at work first of all asking me for my opinion on Section 3.   She explained that Elizabeth had been sent to Huntercombe because she was unmanageable on the ward – she was originally drug free.  Elizabeth could not settle in the scheme in the community after being on acute wards for 15 weeks.  I think she missed the company of others and was feeling unhappy and lonely in the scheme.  On the surface it looks nice but it was regimented full of control and she didn’t bond with the staff “no one understands me Mum”.  There were incidents where Elizabeth showed her anxiety and also I do not think she was eating healthily there as she was at home.  Staff could not cope and the immediate action was to call Police.  There was one outstanding support worker but sadly she was no longer working at the scheme.  No young friends or things going on socially.  She would have been better off in her own place with her own choice of support workers or better still in a community –  I think somewhere like Camphill Community Trust.
I am appalled at the way we as a family have been treated by Enfield Barnet and Haringey MH Trust where there is no accountability so it seems, where everyone protects one another judging by the conversations I have seen in the files.
Huntercombe echoed the views of the private MH professionals who said “Elizabeth sees things very differently  –  “has a difference way of seeing the world”.  Her treatment by MH professionals in Enfield has been abusive, cruel, discriminating, forget the Equality Act – this does not apply as Enfield are a law unto themselves.  Only if they are forced will they apologise.  I do not know why they even bother to employ a Director of Quality – what Quality is there exactly?
Whilst I was not happy Elizabeth was in Huntercombe and put on so much Clonazepam she could hardly speak, there were some things that were good in this private hospital – therapy for a start, food was nice.  The RC agreed with everything I said.  He agreed this was the wrong environment.   Past RC’s on Suffolk ward agreed likewise.  The acute ward was not the right environment for Elizabeth.  She has not been allowed out for three weeks and now Sandra is disallowing leave and imposing what she says is a Section 5 to stop Elizabeth from absconding    – exactly where is Elizabeth going to go –  it is not like treating someone as a human being but an object.  I shall be looking into the law properly before the meeting on Tuesday.,   The law on capacity can be manipulated.    When I confronted her about the comments on schizophrenia being hereditary –  this is not a word Elizabeth would even come out with.  Now I would like to see evidence as I am aware that my daughter needs some kind of treatment but certainly more in terms of therapy rather than enormous quantities of drugs as has been given in the past.  Surely it is good practice for Doctors to give the minimal amount of drugs but this is not so under Enfield MH.  When there is conflict of opinion, this should be explored, not denied as wrong treatment can be given as a result and this can be harmful.  All I am asking is for fairness.
Enfield are using private sector expensive hospitals under the MH.  I cant help but think that taxpayers money could be better spent on care within the local area which in my opinion is appalling and I am saying this in terms of resources, facilities, lack of the correct care and assessments.  It is mainly all about drugs and there is not enough therapists but at Huntercombe there were therapists.
Tomorrow is a get together with Joan Ryan MP and I hope to attend this and I want to talk about this situation.
Meanwhile I am sorry I live in this area and am ashamed I live in the UK where they treat the weak and vulnerable in the most abusive and cruel manner.  I am sorry Elizabeth came home when she would have been better off away from this area.
I have had to take another day off to attend ward round meeting on Tuesday.  Once again displacement is mentioned- once again spending vast sums of money –  how many more times when for a fraction of the price we provided the most wonderful care with caring professionals who tried to help Elizabeth’s trauma.   Being on a ward like this is enough to make anyone traumatised.  This is far from a therapeutic environment unlike Scotland, travelling to some of the most beautiful parts of the world and Australia.
Elizabeth has retreated to being a teenager but because her emotions have been suppressed for so long by enormous quantities of drugs, this is where she needed psychotherapy  but we had no help on this or a previous occasion. As a teenager she was immaculately behaved and polite.  She wanted to be a chef.  She loved her stay in Finland.  She loves animals and children and enjoyed travelling she enjoys music.  Elizabeth could hardly walk when she went away but came back well and able to talk about what happened to her under care in this area.    It upsets me that she is now back in this area where instead of working with the family Professionals wish to split the family using their powers to achieve their aims in what they think is the best interest.   The last “best interest” was a care home hundreds of miles away  where Elizabeth got no food at the weekend.  Elizabeth has agreed to take a small amount of drugs –  but there is now dispute over diagnosis as Huntercombe have identified the care that could benefit Elizabeth provided she is in the right environment and I do not think any locked ward or prison facility is correct for her as she was doing so well in a quiet peaceful and unspoilt part of the UK.
As for “hereditary” in terms of Schizophrenia I have asked for proof of this and for scientific proof of the diagnosis they insist upon and why they are not acting on or dismissing Huntercombe’s recommendations?  When confronted there was a denial of having ever said this.
I will keep you all informed.

I have just received a letter from the CQC MHA enquiries and I am quite pleased with this letter.

Your Concerns – Huntercombe Hospital/Chase Farm.”

Elizabeth was discharged from Huntercombe on Wednesday 05 July and I waited in the foyer of the MH department of Chase Farm Hospital for her arrival.  She arrived at around midnight and was brought back to Suffolk Ward.

“The information you have given us is extremely valuable in helping us decide now or in the future if people using a service are receiving safe, compassionate and high quality care.  What people using services tell us informs our decision making and helps focus on areas of a service that may need attention by a provider.”

Definitely not in the case of Chase Farm Hospital where my daughter has been beaten up, forcibly injected so harshly her slippers broke, threatened by Dr Kunal Choudhary to be thrown out on the street homeless if she did not choose her father as next of kin.   It was already decided that an acute ward and PICU ward are the wrong environment for Elizabeth in any case.

I will notify you of the previous dates of section to Suffolk Ward.

Actually the majority of concerns relate to Chase Farm Hospital –  Elizabeth is not at Huntercombe any more and they have given recommendations for referral to Maudsley specialist unit for Aspergers.

My complaint is against Chase Farm is that someone cancelled the appeal against Section 2 without Elizabeth’s knowledge.  It is not true that she phoned the MHA office herself to do this.   That is what the MHA officer tried to say but I would dispute this and I would like to know why she cancelled the appeal and who told her to.  No way was this Elizabeth.

The letter gives the option of contacting the PHSO to undertake independent investigations into complaints about poor treatment.  I am very pleased with the PHSO’s recent investigation.

 

Elizabeth was first of all transferred from Suffolk Ward on the 19th June.  She was first of all placed on Upper Richmond Ward but then transferred to Lower Richmond Ward but she is not happy there and neither are we as a family.

Whilst probably the food and facility is better than local Chase Farm wards, it is a largely restrictive environment like prison where you have to book a room and where your visiting time is limited to just 1 hour.    This is no place to get well and should only be used short term.  I noticed a big poster on the wall stating on average they keep men for just 12 days and women for 18 –  I wondered why the difference and that both men and women should surely be treated the same.  So this is the second week and not once has Elizabeth been taken out.

Her religious needs are not being met either in this private hospital but I understand that this needs extra funding.   So despite the huge amount paid to Huntercombe in order to escort Elizabeth to the local church you need to pay extra so since Enfield have so much money surely they can provide this extra funding for religious needs.

Food is supposed to be better.

Elizabeth said the staff are OK.

On the therapy side they have much better provision –  it makes you think why this is not being provided on local wards.

The things I do not like are the smoking in a small garden area.

It can be noisy and other patients can flare up but Elizabeth is doing OK and has settle down so I am saddened but not surprised her Tribunal failed today.  She already had solicitors and I do not understand why they were replaced at the very last minute.  None of us want her to remain on this mental health PICU ward as we feel she is not being treated fairly.

Assessments:

They are supposed to carry out an assessment at Huntercombe when there are more than one diagnosis but I do not think this has been done or that they have the expertise on this particular ward geared for mental health to assess Aspergers for instance and they are dismissing complex PTSD.

All they want to do as they are being paid by ENFIELD is to confirm the diagnosis of paranoid schizophrenia treatment resistant.  None of us accept this as we feel she has Aspergers and complex PTSD after what happened to her at Moti Villa, The Ridgeway Enfield, where Elizabeth was terribly abused and this had been bottled up for all these years and suddenly on her return from Australia she started to open up about it.  Not once have ENFIELD provided anything in terms of specialist counselling.  However Dr Kajori Mukherjee – Clinical Psychologist actually did not deny the possibility of complex PTSD and Aspergers which is mentioned in files by more than one expert locally.

ENFIELD want to take the easy way out and drug her up but none of us in the family are just going to sit back and do nothing about this shocking treatment of my daughter.    I am happy to speak to every newspaper about the way my daughter has been treated locally by people who call themselves “professionals”.

I have just heard from Elizabeth that there will be a ward round this week – possibly tomorrow or Wednesday and I am phoning on both days to Lower Richmond Ward to speak to Dr Ahmad.    I want to know what expertise he and other doctors have when it comes to Aspergers which is something quite specialised and he is a specialist in mental  health.

Elizabeth has been on the same drugs they at trying to put her on now at Huntercombe and none have worked.   I am concerned at what they are doing.    I accept that Elizabeth needs “treatment” to tackle post traumatic stress disorder.    She talks in terms of not being fully grown.  She has retreated back to childhood and dissociates herself from recent incidents and does not know why she is on the ward.    It is wrong of the Doctors from Lower Richmond Ward to not properly look into the other diagnoses.

The whole facility is completely wrong for my daughter and I now want to know exactly what their expertise is in the area of learning/developmental/aspergers and complex PTSD.

Totally ignored in this hospital is the P450 liver enzyme tests.

Also being ignored is physical health and wellbeing in terms of endocrinal, heart, cyst, infection with MRSA, other tests for allergies as Elizabeth was severely ill physically as a child.

I feel this hospital is ignoring Elizabeth’s physical health and failing to do proper assessments as they promise.   This is therefore the wrong facility for Elizabeth.    If Elizabeth has been found in need of being sectioned please move her away from a prison environment that has only made her worse and to somewhere where she will get well like The Retreat or Khiron House.    I am sure that this facility must be astronomic in price so there cannot be much difference between this and the facilities I have mentioned set in beautiful grounds.  It is not a waste of money when the care provided is correct.

Even if these facilities are farther away from home if they are providing the correct treatment then this is what counts.  Sadly Cambian did not and neither did the Bethlem or Cygnet.   I just cant believe that this hospital wanted to put her back on Aripiprazole and I want a full enquiry as this drug I have reported for adverse reaction.

When I look at what wonderful weather it is outside I really feel for those patients who are kept prisoner on such wards and no way are facilities like this the place to get better or should they be used long term.

The public have a right to know that money is being misspent in the local area who are failing to produce the correct facilities to deal with conditions such as complex PTSD as well as assess people for other conditions when it is mentioned in the files by other professionals.

If they take Elizabeth off the Clonazepam I feel they should just leave her on the current dosage even though it is a drug that brought her out in a rash as noted in the files.  All want is for her to be on a low dosage.

Elizabeth would thrive in a natural environment such as Camphill Community Trust.  There are such facilities near to where the rest of the family live and I do not feel she has ever been treated fairly in this area of ENFIELD.

 

 

 

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