NEAREST RELATIVE UNDER MENTAL HEALTH ACT 1983 (Sections 26-30 Mental Health Act 1983)

The following are treated as “relatives” under the MHA.

  • Husband/wife/civil partner;
  • Partner who has been living with you as if they were your husband, wife or civil partner for more than six months
  • Son or daughter
  • mother or father
  • brother or sister
  • grandmother or granddaughter
  • aunt or uncle
  • nephew or niece
  • anyone else you have been living with for at least five years 
  • Can a Nearest Relative Change?

Rules regarding who your nearest relative is means sometimes your NR might change without you or anyone else doing anything.  Eg. – if you got married your husband or wife would normally become your nearest relative.

OR – in our case:

THE COUNTY COURT CAN ALSO CHANGE YOUR NR OR MAKE SOMEONE YOUR NEAREST RELATIVE IF YOU DONT HAVE ONE ALREADY.  

Normally an Approved Mental Health Professional (AMHP) makes the application for detention or guardianship.  An AMHP is someone “specially trained” to decide whether people need to be detained or put on guardianship.  Questions need to be asked as to why such professionals behave the way they do towards vulnerable people my true story describes exactly what we went through in 2014 when clozapine was deprived for four days:    get-her-back-we-are-paying-for-that-17-05-15

S2 had expired.  Huntercombe sent her back to Suffolk Ward, Enfield.  Elizabeth had been forcibly drugged on contra-indicated Clonazepam and Risperiedon at Huntercombe and was  OF NO RISK TO SELF OR OTHERS contrary to what was written in the previous tribunal papers deliberately negatively by the RC.  I was waiting to meet Elizabeth when she had arrived back to Enfield around midnight.

Elizabeth had been sent all over London to different hospitals on PICU/acute wards and was further traumatised by all this as she was allowed to come off 2.5mg Aripiprazole at her request in one go by the NHS but they did not titrate it down properly.   These prison types of hospital facility (whether public or private) are no place for someone suffering from PTSD to get better.   Huntercombe  assessed her as having “high spectrum Aspergers” whereas locally she is said to have low intelligence which is not true at all.  Elizabeth was so happy to be regarded as someone who was intelligent by the team at Huntercombe but for some reason local doctors do not listen.   They prefer to stick to the damaging unscientific labels of  “Emotional Unstable Personality Disorder” or “Paranoid Schizophrenia”  but suddenly for some strange reason they have dropped (treatment resistant)” – “Treatment Resistant” means “poor/non metaboliser”.     No bio marker has ever been found for this unscientific label.  However, the label of “schizophrenia” is just an excuse for “treatment” using antipsychotic drugs which should only be given short term. Locally they prefer to ignore physical health problems and do not read the files properly before prescribing but then again, the files are full of errors and fabricated by non-medical professionals who have written untruthfully however – they prefer to ignore the damaging things that have happened to Elizabeth under their own care.   This “treatment” of Risperidon has been tried and failed before and Elizabeth had to be taken off the drug due to allergic reaction, hence my objection.  

I was Elizabeth’s nearest relative until recently when I was forced to delegate my role, threatened that I would get enormous costs if I continued to defend myself in court against people who have written the most nasty damaging and untrue comments against us. On return from Huntercombe, Elizabeth was placed on Section 5.2 – and deprived of her liberty unlawfully.  They had put her back on the drugs Clonazepam as well as Risperidon –  Elizabeth was of no risk to anyone yet some very detrimental things were stated by two doctors who elaborate using negative comments which did not apply to Elizabeth as she was subdued and drugged once again.  Elizabeth was denied time off the ward with her family on section 17 leave. We were told she did not wish to share information with us and this is constantly used I suppose for the reason it is protection for themselves. 

APOLOGY LETTER FROM HEAD OF MH LAW CORPORATE DIRECTORATE BARNET ENFIELD AND HARINGEY MH TRUST DATED 12 JULY 2017:

 “your detention under Section 2 MHA which began on 12th July 2017 ceased at midnight beginning 10th July 2017 because the 28 day period authorised by Section 2 elapsed at that time.  You were subsequently detained again using MHA holding powers at 6pm on the 10th July.  (If during the intervening 18-hour period between expiry of S2 and your detention under holding powers you were not consenting to remain on the ward it is likely your liberty was infringed)  I am very sorry if this is the case and hope you will accept my apologies on behalf of the Trust.  We will be looking carefully at this incident to establish what went wrong and how we can prevent something like this happening again in future.”   

BARRING ORDER and COURT

London Borough of Enfield paid £308 to take me to court to displace me as NR with an AHMP I remembered back in 2010.    Elizabeth then lived at Moti Villa (a MH scheme in the community) and was dreadfully abused there.   The person appointed by the Local Authority as “nominal nearest relative” at the Royal Courts of Justice County Court Hearing I did not attend on 12 July 2017 was someone involved in the initial investigation into my complaint.  There were so many errors in the court papers I was surprised they were even accepted.  My address was wrong, names were misspelt.  “The Applicant seeks an urgent order displacing the Respondent as the nearest relative for her daughter ………………..and that the functions of the nearest relative shall be exercisable by the current DIRECTOR OF HEALTH, HOUSING AND ADULT SOCIAL CARE AT THE LONDON BOROUGH OF ENFIELD  – see below:

http://www.enfieldccg.nhs.uk/profiles/ray-james/10588I.   https://www.england.nhs.uk/2017/10/nhs-england-appoints-senior-local-government-leader-as-national-learning-disability-director/

Accompanying the Application was a negative report by Dr M stating  “it was the opinion of the treating consultant  (Huntercombe) that  …………. has Aspergers syndrome and he advised a specialist referral.”  However Dr M states:   “It is in my opinion that …………has an underlying psychotic “illness” which at times results in her becoming highly aroused and unable to manage her own behaviour.  She has been assessed as having borderline learning difficulties and this is complicating her current presentation.   I have reviewed ………………..past history  (Past History is wrong) following more prolonged in-patient treatment with antispscyhotic medication ………….seems more settled and more able to engage in activities within the community.”  (ELIZABETH WAS NOT IN THE COMMUNITY AND HAD BEEN HELD LIKE A PRISONER FOR AT LEAST THREE MONTHS, DEPRIVED OF CONTACT WITH  FAMILY OFF WARD FOR QUITE SOME TIME.  SHE WAS NOT RELEASED FROM S3 UNTIL SEPTEMBER 2017.  

HERE IS WHY I OBJECTED TO TREATMENT ON SUFFOLK WARD:

  • ANOTHER RC THREATENED TO THROW HER OUT ON THE STREET HOMELESS;
  • FORCIBLY DRAGGED BY SUCH FORCE HER SLIPPERS BROKE AND INJECTED;
  • SOLICTORS CANCELLED BY MHA OFFICE UNKNOWN TO HER;
  • BEEN ILLEGALLY DEPRIVED OF HER LIBERTY HENCE APOLOGY LETTER FROM MC of MHA DIRECTORATE;   
  • ATTACKED BY ANOTHER PATIENT, BEATEN AROUND THE HEAD  AND SENT TO EDGWARE – TRENT WARD;
  • DELIBERATELY NEGATIVE REPORTS FOR TRIBUNAL WHEN ELIZABETH HAD BEEN STABLE (done for a reason said the RC when Elizbabeth asked “why?”)
  • NOISY, VOLATILE ENVIRONMENT LIKE A WAR ZONE AT TIMES SECLUSION ROOMS SOMETIMES IN USE DAY AND NIGHT; 
  • FORCED DRUG TREATMENT INSTEAD OF PSYCHOTHERAPY – ONLY ONE PSYCHOLOGIST SHARED BETWEEN LOTS OF WARDS SO I HEARD 

OTHER RCS AGREED HAT A PICU/ACUTE WARD WAS NOT THE RIGHT ENVIRONMENT FOR ELIZABETH TO BE IN AND SHE WAS GOING DOWNHILL IN THAT PRISON LIKE ENVIRONMENT.

It was not Section 3 I objected to but the facility itself and “treatment” of the same nature which had been tried and failed before.  I asked for a second opinion – it is even mentioned in the files that Elizabeth gained no benefit from antipsychotics and this is because Elizabeth cannot metabolise these drugs as proven by the P450 liver enzyme tests.  I wanted a SOAD to assess on complex trauma and for the proper treatment to be provided in the right environment but there are no decent facilities apart from in York where they have a place called “The Retreat” and “Amitola Communities”.   If Elizabeth got the right kind of care which is therapy I would not have minded about the Section 3 but this would not have been necessary as Elizabeth would have been compliant with such therapy as she was in Australia and Scotland where we found the right kind of care through http://www.working-to-recovery and saw Elizabeth come back well after four wonderful months away where she travelled extensively with private MH professionals who do not agree with damaging labels and gave proper care in the right environment.

Dr M’s Report dated 06.07.17:

…………….. has complex mental health difficulties and was transferred from PICU ward yesterday (05.07.17).  She has poor insight into her condition and could not be safely managed on the ward if she continued to be informal.  She is disorganised in her thinking and expressing delusional thoughts regarding the devil and does not believe she requires treatment at the present time.”     But what exactly is her condition? – an entire team from another hospital has disagreed as well as conflict of opinion in the local area by various other professionals previously and a full psychiatric report on complex PTSD.  Elizabeth was detained longer than was necessary in a hospital environment like prison  and a particularly negative report was produced on purpose by the RC for the last tribunal  which upset Elizabeth who asked “why” to which she was told  “this is done for a reason”.

I received a call from the AHMP (SM) from Enfield Community Rehab team to say they would be displacing me as Nearest Relative for being “unreasonable”.   I was told verbally  the Preliminary Hearing would be on 12 July 2017 and that the next morning I would be given full details.  I was not and I had to find out myself by phoning the Council’s legal department as by mid-morning I still had not heard anything about which court number and the Legal Department told me it was at RcJ and time so I had to  rush to get to the RcJ.  The Hearing took place without me because I was given the wrong details (ie. court no.) and I ended up attending the wrong court but Lady Justice Roberts saw me and even read all my evidence I had brought together on why Enfield Council would not make a suitable NR.  She was kind enough to write to me afterwards “Her Ladyship hopes you managed to get to the correct court for the hearing.”   This was about my best experience in court.  She had asked me what I hoped to see as an outcome and I responded “all I want is to be treated fairly” but I can see that things are not fair in court.  When you are dragged to court as I was and called “unreasonable” for a start you cannot get legal aid if you work/own a property.  When it came to medication/treatment the Judge had no remit and when I was asked if I disagreed with the treatment this went against me but this is wrong as there is conflict of opinion on diagnosis and treatment by professionals and Elizabeth should have had a SOAD who was completely independent from the local team and not chosen by the local team.  No way should a team of professionals locally be allowed to carry out assessments on anyone vulnerable like my daughter unless it is done independently.

In my absence I was displaced by the Court giving temporary consent for the Local Authority to act as NR but I recognised the name of the AHMP going back to 2010 and I objected on the grounds that she was absolutely unsuitable to act as NR.   I have her notes and her response to our PHSO complaint regarding when Elizabeth had been multiply abused under Moti Villa Scheme (2010) hence my objection to her “suitability” for the role of NR.

I was invited to attend the next Hearing on 19th July by and this time given the correct details but when I visited Elizabeth after going up to RcJ and after missing the Preliminary Hearing, the AHMP who took me to court (SM) was there and announced “Enfield Council are now your NR and then went on to comment about my unsuitability for this role.  She had barged in to my visit and told me to leave the patient’s visiting room but I refused.  I had rushed up to see Elizabeth and I felt she was extremely rude by barging in the way she did and by the way she spoke, ignoring me and directing her comments at Elizabeth and waving the Court Order in front of Elizabeth in a gloating manner.

The Judge remarked on my substantial evidence and was interested in the P450 liver Enzyme test results. When he said “have you seen this?” the Council’s legal representative said “no” which was untrue of course.    I provided substantial evidence especially as to why the “NOMINAL NEAREST RELATIVE OF ENFIELD COUNCIL WAS UNSUITABLE  to be NR and did a Witness Statement as well as “Particulars of Claim” – I had to correct their Particulars of Claim from start to finish as there were so many errors.  It took me a long time to do this and to type and present the legal documents to look identical to theirs.    

Some evidence by the Council’s Legal Representative was handed to the Judge which we had not seen, not included in the court papers.    I was given a copy of the two AHMP’s comments relating to a visit they made to Elizabeth at a time when she was not well which of course looked extremely negative but I have seen that these people like to invent all sorts and some comments in the court papers were hilarious.  I will comment on that later.

So I decided to respond to this evidence and I copied everyone in including the Judge’s Clerk but this did not go down at all well but I have never been forced to have to stand up for myself like this before and I never got a  chance to at Court of Protection in 2014.  Thankfully that case went in my favour and I have nothing but praise for the Court of Protection who have fairly treated us all along.  Elizabeth was allowed to come home and live a care home  said to be “Best Interest” where she had no food at the weekend –  all recorded in the files and this care home is Phoenix House Stepping Stones in Northampton rated “good” by the CQC 

It was decided it was “best interest” for Elizabeth to live in her “supported living scheme” in the community.  However Elizabeth is more settled now – a scheme such as this where residents are not even given front door keys should be only be for 1 year in my opinion.

When the Judge asked me would I agree to the “treatment” I responded –  “what treatment exactly”  – a drug she was found to be allergic to in the past for schizophrenia when Huntercombe diagnosed high functioning Aspergers. This resulted in the AHMP being allowed to remain as nominal NR pending next Hearing.  The NHS negligently allowed her to come off the last chemical in one go when it should have been slowly and gradually titrated down.   The treatment that should have been given was psychotherapy and EMDR and I had looked up some suitable facilities having spoken to someone I know who was a colleague of Dr R D Laing – here are some of his comments:

“my late friend and colleague Dr R D Laing worked with such folk using psychotherapy and no drugs. He and Dr Berke successfully treated Mary Barnes (she wrote a book about her experiences from severe mental disorder to good health) Mary came to see me with a brilliant idea which I was able to put into operation but giving credit to her (Philadelphia Association).  He mentions the Cassel Hospital specialising psychoanalytical psychotherapy.     The Cassel is an NHS Hospital.   “Ronnie Laing treated folk with psychoanalytical psychotherapy without drugs – it takes longer but is successful.    Psychiatrists are physicians not trained psychoanalytically.  I was once asked at Kings College Hospital London what drugs I used when treating patients with psychosis.  When I said as a psychoanalyst I did not use any drugs they were shocked. I was shocked that they were shocked.   

 LONDON BOROUGH OF ENFIELD v SUSAN BEVIS PRELIMINARY HEARING 12 July 2017

Particulars of Claim as amended 13.07.17

  1.  “This is an urgent application made under Section 29(3) of the MHA 1983 to displace the Respondent (Ms Susan Bevis) as the Nearest Relative of her daughter ……..it is the Applicant’s case that the following grounds under Section 29 (3) (c) and (e) of the MHA to displace the Respondent are made out:
  • the respondent unreasonably objects to the making of an application for admission for treatment in respect of her daughter …………………..;
  • the Respondent is not a suitable person to act as Nearest Relative.

Her mother (the Respondent to this application) is his??????  Nearest Relative.”

……………….is being held on Suffolk Ward – Chase Farm Hospital, The Ridgeway, Enfield EN2 7JR under section 5(2) of the MHA.  Detention under this provision in hospital is authorised for 72 hours.  Authority to detain ………………..under this provision expires at 00.00 on 12 July 2017. 

Manufacturers instructions for drugs such as Risperidone are only for about 8 weeks but doctors like to keep patients on these chemicals for a long time.

Medical Condition stated in Particulars of Claim, as amended 13.07.17.

“……………… was detained most recently on 13 June 2017)???  Don’t think this is right at all.

The Applicant considers that ……………….meets the criteria for admission for treatment under section 3 of the MHA and would make such an application if the Respondent were not objecting to the same”    The Respondent objects quite rightly so because such a ward is the wrong environment to get well- it is noisy and volatile and also the treatment is wrong for complex PTSD and high functioning Aspergers so how comes I am labelled as unreasonable when Doctors have diagnosed these conditions and a SOAD has been denied to Elizabeth?   

Consultants “Drs M and AA’s Report 6th and 7th July recommend that “………………..be detained for treatment under section 3 MHA” handwritten in the Particulars of Claim  date of reading at being 10 July 2017.

It is my opinion that ………….has an underlying psychotic illness which at times results in her becoming high aroused and unable to manage her own behaviour.  She has been assessed as having borderline learning difficulties which is complicating her current presentation.  I have reviewed ………….past history and following more prolonged inpatient treatment with antipsychotic medication …………..appears more settled and more able to engage in activities within the community.  It is my opinion that …………..requires a further period of in-patient treatment in order to have a longer period of stability on antipsychotic treatment to allow a longer reintegration home with an exploration of her social activities and to allow a forensic assessment in order to try to contain any potential risk she poses to others.”    No she does not!

Past history: as documented in the files is inaccurate.    There is big conflict of opinion on diagnosis between various Doctors in fact, a huge divide in opinion with Huntercombe’s recent assessment but Elizabeth was denied a proper independent assessment by a specialist in the field of PTSD and Aspergers is being denied and recent opinion by a whole team at Huntercombe has been ignored in favour of “mental illness” “Emotionally Unstable Personality Disorder and paranoid schizophrenia.

The drug Risperiedon (2mg) is being prescribed and has been for four months and Elizabeth has not seen a SOAD (Second Opinion Doctor).   Doctors are ignoring the fact that Elizabeth had an allergic reaction to this drug back in 2012 and now she has a rash –  Here is an extract from the report on :

Drug History

she has been prescribed various antipsychotics including olanzapine, risperidone- to which she developed a rash) and aripiprazole with no response. She has been prescribed quetiapine for quite some time.  The current dose of quetiapine xl is 750mg once daily.    “on assessing her mental capacity formally around medication decisions on 2 December 2010 she was judged as having mental capacity to make a decision regarding her medication”

Risperidone – Current “Treatment” given by Enfield MH of which she is allergic and has  been prescribed Piriton.    Instead it would have been good if these doctors started to think along the lines of proper withdrawals such as by the following method – no way should people be forced to take these highly dangerous drugs long term, against manufacturers instructions.

https://www.change.org/p/provide-tapering-strips-to-help-users-who-want-to-stop-taking-anxiety-depression-drugs/d?source_location=combo_psf

We managed to get the poisonous dye tablets changed to white and every day Elizabeth’s support workers at her scheme give out the drugs.  They have built a medication room within the shared house and staff sit in there a lot of the time.  Elizabeth has come out in a rash all over her back and her GP at Oakwood Medical Practice has now prescribed Piriton but I have looked this up and found that this is contra-indicated.  There has been no review or reduction in the drug since her return to Suffolk Ward in July.   This is not good and also I note another prescription from Oakwood Medical Practice even more alarming is laxatives.   A known side-effect of the drug Risperidon is constipation and someone died of this recently.

Constipation death ‘wholly preventable’

Can I be forced to take medication when I am living in the community? – this piece below refers to something I have seen on the Mind website.

You cannot be compelled to take medication in the community. This is the case even if you are subject to supervised community treatment in the community under a Community Treatment Order (CTO). You may, however, be recalled to hospital if you have broken any conditions of your CTO, and you may be compelled to take medication there. For further information on the effects of supervised community treatment, see Community care and aftercare. Even if you are not subject to compulsion under any sections of the Mental Health Act, you may decide you have little choice about continuing to take your medication. For example, if you are still on section but your RC (or AC) has given you leave from the ward under section 17 MHA, they can revoke it at any time and require you to stay on the ward. Your RC (or AC) should not do this simply because you stop taking medication, but stopping may lead to a review of your health and a consideration of whether leave should continue. Similarly, if you have been conditionally discharged from hospital and are subject to supervision in the community, the Secretary of State for Justice may review your case, and has the power to recall you to hospital, if you are becoming a risk because you cease taking medication.

If you are discharged from section, you do not have to take medication. However, if concern is then expressed about your health or safety, the authorities might organise an assessment to decide whether you should be re-admitted to hospital, and possibly detained under the MHA. For further details, see Civil admission to hospital.

It seems like doctors are failing to inform patients of the risks and side effects of antipsychotics.  They are also failing to look thoroughly into a patient’s past history as if they did they would see that Elizabeth was taken off this same drug because of adverse reaction in 2012.  The unique P450 liver enzyme test results show “poor/non metaboliser” which means that Elizabeth is prone to adverse reactions on psychiatric drugs.      These tests I had done are not yet available through NHS but will be soon so I heard recently.  I had them done privately, recommended by the Country’s leading expert who referred Elizabeth to Holland.  “Treatment Resistant” = poor/non metaboliser of drugs as concluded with accurate lab tests.  Elizabeth’s symptoms have been mistaken for signs of “illness” when all along she could not metabolise these chemicals and was having a bad reaction to them plus of course she should have got counselling.  I was looking at my extensive records today back to 2010 when Elizabeth suffered serious abuse under Moti Villa – a scheme in the community.

By section 11(4) of the MHA an Approved Mental Health Professional (AHMP) may not make an application for admission for treatment under section 3 of the MHA in respect of a patient if the patient’s nearest relative has notified the AHMP that they object to the application being made.  The Applicant and the Consultant Psychiatrist consulted with the Respondent about the proposal to admit ………………. for treatment under Section 3 of the MHA. The Respondent objected to her daughter being detained for treatment under section 3 of the MHA.  But why unreasonable? when Doctors ignore manufacturer’s instructions giving contra-indicated drugs and keeping patients on  drugs longer than recommended by the manufacturers themselves. They do not titrate the drugs down slowly and gradually as they should and this leads to withdrawal symptoms which mistaken for relapse/symptoms of so called “mental illness”.    

https://www.youtube.com/watch?v=eAnVi3Zuay4    –  thank goodness there are some who care ie Dr Joanna Moncrieff – RADAR.

I think that my objection was far from unreasonable –  we sent Elizabeth to stay with MH professionals in their home for humane care for four months.  Elizabeth travelled from Scotland to France and Spain – then to Dubai then Australia.  We saw her come back so well – the best we’d ever seen.  Four months in a peaceful, natural environment with proper care such as psychotherapy and good food did her wonders.  It was possible to work with her on much less drugs – how can you effectively work with someone on enormous quantities of chemicals or expect them to engage when they feel terrible? 

I’m not the only parent who is fed up with what is going on in the UK.  Their sons/daughters are sent away hundreds of miles from home to “prison environments” owned by corporate providers where brutal treatment goes on and enforced drugging plus isolation from their families which is very detrimental.  It is profitable  for those offering the “care” which does not address the real causes and is a complete waste of money.   The law is failing to protect the weak and vulnerable and families are not supported in court to defend themselves and if someone is dragged to court like I was there seems to be no fairness especially as far as the Nearest Relative/deprival of liberty/mental capacity is concerned and these areas need to be amended under the MHA to make it fairer as mental health law can easily be usurped by professionals who are ruthless in their dealings as I will go onto further document.  There needs to be accountability so that the following abuses do not continue not just within hospitals both private and public under MH/LD but also in connection with private providers of supported housing/living accommodation – these should be regulated independently and NOT BY ANY LOCAL AUTHORITY.    

Dispatches (Undercover Inside the Priory: Channel 4 …  

‘Disgusting’ treatment at Kent mental health service – BBC …

AUTHOR ERIC COATES WRITES BRILLIANTLY ABOUT THE TRUTH OF WHAT IS REALLY GOING ON:

https://www.madinamerica.com/2017/09/invisible-holocaust-gene-hypothesis/

Abuse is widespread –  it seems to be going on everywhere in the UK as there is no accountability. No way should a nearest relative be constantly dragged to court when there are genuine concerns on treatment and conflict of opinion by professionals.    I can understand this route of action if a nearest relative was convicted of serious abuse for instance but not in the case of a nearest relative who has genuine concerns of a very valid nature. It is wrong how some professionals try and manipulate the law.

I along with other parents would like the right facility provided not an expensive profit making private prison – a facility should have beautiful grounds and no forced drugging. Many people under the MH have suffered extensive abuse and are yet further abused under the current system. 

Particulars of Claim: state “Applicant has consulted with …………sister on 11 July 2017 “she does not want to act as Nearest Relative (please see AHMP’s report attached).  …………………’s father was not consulted because he had in the past made it known that he does not wish to act as Nearest Relative.   THIS IS UNTRUE.   

Elizabeth’s sister was  not even asked. Elizabeth’s sister had written to the Manager of Enfield Comm. Rehab :

“My Dad is going to give you a call at some point either today or early next week to be filled in with information with regards to my sister.  Also when you phoned me last week you did not ask me if I wanted to be nearest relative for my sister.  However, this has been put in the court papers issued to my mother.  You never asked me about this – you just asked if my mum would accept …………..going on a section and you asked about my father but you did not ask me so I suggest you rectify that in your court papers as this is not true”

She responded:

“Dear 

I did not ask you because for you to be Nearest Relative your mother would need to transfer this to you –  it is not for me to give you this responsibility to you.  I hope that is clear I will check the papers to see what you mean.”

UNREASONABLE 

I objected to the AHMP appointed as “nominal NR” This person was meant to carry out an investigation into my complaint going back to 2010 at Moti Villa.  Instead she wrote nasty comments and put blame on me for what happened under care provided by them.

I do not feel that the Preliminary Hearing should not have concluded granting nominal NR status to this AHMP as there were so many errors in the court papers.  The case should have been thrown out in my opinion.

I decided to be a  Litigant in Person when I read the shocking comments written in  court papers by the other AHMP (sm)

D… (East Enfield Team) had written her response:

“In the first paragraph she makes reference to “something really bad happened to her” – Police were involved but sadly they could not find the CCTV camera anywhere yet it states in the files there was one and makes reference to this.  ,

“she has twice deliberately got herself in a short space of time recently into hospital” –

Yes and we all know why so there is no point in any more cover-ups.  After we provided proper care in Australia Elizabeth was able to tell us everything.

 “……………….is trying to escape her MOTHER!  Her admissions to hospital have been precipitated by her MOTHER being overbearing and intruding on her personal space.  Frequently going to her accommodation late into the evening/night and refusing to leave when …………………….asks her to do so resulting in a fall-out in which “MUM”   perceives as her being mentally unwell  therefore excusing her own behaviours or respecting that LB has feelings and opinions of her own.  Support staff have regularly noted significant changes in ………………..behaviour and mood following MOTHER’s visits to her flat.      MORE LIES!!!   Just covering up aren’t you!  I have never read such rubbish.   

I can see now reading the files why there was such panic when I appointed Susan Hepburn (Hypnotherapist) as nothing was provided from the Person Centred Approach after 6 months!   I could have found out in just 1 hour what Elizabeth would have liked and then the team could have provided it.   When we took her to Harley Street she could not eat or swallow on nearly 800mg Quetiapine.  When she came out after seeing Susan I was astonished at the miracle we saw  – like a different person – like there was nothing wrong with her.

D stated Elizabeth was found not to have a LD and “best interest” was a placement under MH where she was ABUSED wasn’t she.  However private MH professionals who had Elizabeth live with them for four months would completely disagree with labelling –  totally stigmatizing and only if you live with someone can anything accurate be documented about someone’s “condition” NOT ILLNESS!.

SAFEGUARDING

I’ve heard the word “empowerment” plenty of times and “service users finding their own voice” but in actual fact I would call it abuse as Elizabeth was dragged to meeting after meeting with nine professionals flanked by three members of staff,  sprung on her at short notice and she did not wish to attend such meetings.  She was encouraged to tick boxes unrepresented by any advocate and put under pressure by NINE PROFESSIONALS including GP to blame myself and someone else – a friend of the family of serious abuse. The AHMP SM) was involved in this Safeguarding  NO ADVOCATE PRESENT – they were in breach of the Councils Code of Conduct and I have since received an apology letter from Trust and Council.   Wehen I requested the missing minutes the team sent them with everything covered in thick black lines of ink so you could not read anything this must have cost the Council a lot of money in ink.  I thought they were supposed to be short of resources and yet no expense is spared when it comes to taking the NR to court they do not approve of.   There is a pack of lies in those minutes you can imagine.    How nasty can you get.  I am glad that I saw them and I reported them to the Police.

Getting back to the “nominal NR’s” 2010 report:-

it is not the role of staff to do things for LB  –  I turned up one evening to find Elizabeth with sitting alone in darkness as the light bulb had gone and there was no spare lightbulbs. Elizabeth became isolated in a flat surrounded by others with MH problems.  The music from a neighbour’s flat was so loud beneath her causing the floor to vibrate and this bothered Elizabeth.  She goes on to defend:  “the living area may be untidy and disorganised but this is not uncommon for young people without independent life skills of their own age”   NO DM  –  ……………..she could not function on 800mg drugs – COULD YOU???  The flat was squalid, bins overflowing – green potatoes, sink full of washing up.  No money taken from office upstairs to buy healthy food –   “WE CANT BE BOTHERED WITH HER BECAUSE OF THE MOTHER”- so a family friend was told.   Confidentiality is often played upon by staff to cover up when things go wrong but the truth always comes out in the end   “Currently she is in receipt of a self-directed care package requesting that the local authority manages her care and support needs on her behalf.   Yes and is that why nothing was provided after 6 months of Person-Centred Approach ENFIELD COUNCIL?

“To summarise there is a long history of mother making complaints of the same nature in addition to requesting …………….be taken off all medication that direct payments are given.   “Hypnotherapy being harmful that it is not recommended under NICE Guidelines for LB’s nature and degree of mental illness”   RUBBISH!!! ……………….WAS  BADLY ABUSED UNDER CARE PROVIDED BY ENFIELD COUNCIL AND NOW WE ALL KNOW.  MY DAUGHTER WAS DRUGGED TO HILT AND WAS UNABLE TO SPEAK AT THE TIME.  YES I DID REQUEST DIRECT PAYMENTS SO THAT ELIZABETH COULD CHOOSE PEER SUPPORT FRIENDS AND IF MY COMPLAINTS WERE OF THE SAME NATURE THIS IS BECAUSE NOT ONE WAS ANSWERED PROPERLY.

“CONSENSUAL”   STOP TRYING TO MAKE EXCUSES.  THERE ARE MANY WITNESSES –  NO WAY SHOULD MY DAUGHTER EVER HAVE TO BE DRUGGED UP TO THE HILT AGAIN OVER UP THE RUTH.   YOU ARE THE REASON I DECIDED TO DEFEND MYSELF IN COURT AS A LITIGANT IN PERSON ONLY TO FIND MYSELF AT A DISADVANTAGE IN COURT BY A SYSTEM GEARED TO PROTECTING THE  PROFESSIONALS AND NOONE WILL DEAL WITH YOU AS A LITIGANT IN PERSON WHO WANTED THE REPORT FROM HUNTERCOMBE VITAL TO MY EVIDENCE.

I am tired of professionals who lie to cover up the truth who are unaccountable.  Like many parents – all I want is to see my daughter on as little drugs as possible in the hope that she can eventually be taken off the drugs as she is a trauma victim and needs specialist counselling for what she has been through.   The NHS should have titrated the 2.5mg aripiprazole slowly and gradually  but they did it far too steeply and she suffered chronic pain when off the drug.  Drugs mask the truth and can be used to cover up abuse – they should not be given long term off label against manufacturer’s instructions.  Professionals use coercion, gas lighting, threats and play on confidentiality.  “……………has requested we do not share details with her mother”.     I know how safeguarding works too –  STRICTLY IN THEIR FAVOUR WHILST THEY ATTEMPT TO ISOLATE THE PERSON CONCERNED FROM THEIR FAMILY AND ACCUSE THE FAMILY WRONGLY OF ABUSE USING A VULNERABLE PERSON IN A DESPICABLE WAY AND NOT ONLY WRITING NASTILY ABOUT MYSELF WHO HAS DARED TO CHALLENGE THEM BUT ALSO ABOUT ELIZABETH IN A DAMAGING WAY “THAT’S NOT TRUE MUM” – HER RESPONSE TO SOME OF THEIR COMMENTS.   at such meetings Elizabeth is often asked  “you don’t want your mother to see the files do you”.   But when I was present once at a meeting together with Elizabeth, she was asked if it was OK  to share information and this did not go down too well when she said “OK”  Now they would have Elizabeth in first and then say “she doesn’t want you to see the files”  –  well I have enough files to prove my point.

Judging by the comments written about me I am not popular with the team but I have acquired extensive records – it is a pity they dismiss me and exclude me from open dialogue – if there was an open transparent system I would have no complaints.  If there was inclusion, not exclusion and playing on confidentiality constantly then there would be accurate file records and issues could be resolved and a clear picture gained –  my local area are trialling open dialogue but we have been excluded.

I have been called “that woman

Vexatious complainant but because my complaints were different they could not label me with this so I can see.   Prolific –  well that is understandable when you get fobbed off with the same old letters from the CEO and she has not even replied to one relating to the time when Elizabeth was denied “medication” in breach of Art 3.

Nothing is done fairly, they stick together to defend one another and give my complaint to the department to which the complaint is all about –  I find this very amusing.

Money is being misspent on providing the wrong kind of facility – there seems to be no end of money to take people to court like myself to get rid of them.

Just because they are paying for the facility should not be reason for these professionals to treat someone in such a degrading manner.

Hearing people discuss you in another room for instance negatively – all this contributed to Elizabeth not settling from the beginning but she is settled now but the result was she is currently on a CTO.   The date this took place was on 19 Sep 2017 so she was held quite some time on Suffolk Ward on a section 3.   The care coordinator is described as “new” but she is far from new as she goes back to when Elizabeth was at Cambian.

Outcome of Court Hearing:

The Judge wanted to meet Elizabeth to hear what she wanted which I thought was extremely fair.  It is disgraceful how the Council treated Elizabeth not providing her with a copy of the court papers like an object rather than a person and it was ordered that a capacity assessment be arranged but because I had no trust whatsoever in the AHMPs I insisted upon an independent capacity assessment and Elizabeth was found to have capacity.

It was proposed by LBE the interim order shall continue.     Elizabeth had been treated like she was invisible by Enfield MH and I was very pleased with the Judge’s comments that he wanted her included in proceedings. 

Parties to cooperate (as agreed by His Honour Judge ………) for the patient to be joined to the proceedings Capacity Assessment to be carried out asap”

Dr S visited on a Sunday during the time that I was visiting and carried out the assessment –   Elizabeth did very well in this Assessment.  Elizabeth had appointed solicitors of her own.  They advised her to choose her sister as NR as I would lose in court and get all the costs.  Elizabeth agreed and her sister agreed to act as NR and because I was threatened with enormous costs I backed out delegating my role as NR to her sister.  Although it was said this was what Elizabeth wanted in terms of NR there is no way she would have done this if she was not advised to go for displacement of me as NR putting me in the position of not wishing to fight for this role any longer in court where it would be likely I would not stand a chance but I wanted to prove my point that professionals were covering up something very serious that happened under their care and I feel that the treatment of my daughter has been abusive by certain professionals.

As a litigant in person I felt I was at a disadvantage.  Huntercombe ignored my request for the assessment report and refused to give it stating I needed solicitors.  They have also refused to give the report to Elizabeth and we have jointly complained to the ICO about this.

I was put under pressure to back out of court proceedings so I wrote to the Judge explaining I felt I had no choice in the matter.

The Council had sent me a Consent Order trying to try to get me to agree to their costs of up to £5K.  “The Respondent shall agree to pay the Applicant’s costs” I crossed this bit out but was afraid about continuing with the case as much as I wanted to

On 3rd October last year I was invited to a meeting with Enfield Community Rehab Manager/care coordinator and AHMP who took me to court for displacement.   I attended this meeting along with younger daughter and a friend.  We asked if we could record this important meeting but were told by the manager it was against their human rights.  What about our human rights not to be documented in such a nasty manner and accurate things documented in the files.   This is biased in my opinion.  There is no law that says you cannot record and especially in light of the fact that so many damaging things have been said that cannot be erased from their records and this again is wrong.    It was mentioned that Enfield Council’s Legal Team suggested to allow having someone she knew (apart from me) as NR.  The Council agreed to the delegation of  NR to her sister but this was meant to be granted only for the duration of the CTO but what I did not realise was that underlying the CTO was a S3 –  I knew this S3 had expired but I did not know that the S3 could just be renewed and was constantly underlying the CTO so my signature on the accompanying delegation form was only meant to be until the date CTO was due to expire middle of March 2018.   Elizabeth has now settled well into the community and there is no reason for her to be on a CTO but I fear what they will do is act unfairly and keep on renewing it.  For the first renewal is six months and thereafter 12 years at a time and people are stuck on CTOs that have unfair conditions attached to them.  For instance that person may have the freedom to come and go when they like unrestricted as they are of NO RISK TO SELF OR OTHERS. However, that person has no front door key and has to be back by a certain time because staff sleep through the night and no one would hear that person knocking on the door.  The door bell has still not been repaired and I hope the boiler has that packed up over the weekend.  Elizabeth has been allowed to spend time with other family members over Xmas but leading up to this she was anxious – Elizabeth gets anxious when it comes to going somewhere new at first and she was also excited at the same time.  Everything went so well over Xmas and she came back really happy.

I think without doubt the MHA needs to be amended -the sooner the better.

Activities section of the Care Plan is all about Medication – the employees are not nurses/doctors yet Elizabeth is expected to discuss with staff ensuring she understands why she is being asked to take medication -staff to encourage Elizabeth to take medication – staff to explain the benefits and importance of taking medication for her mental wellbeing and recovery – staff to discuss any mixed feelings (ambivalence) she may have about taking medication.  Current Medication is Risperidone tablet mg at night –  YOU ARE NEGLIGENTLY IGNORING THAT ELIZABETH WAS PREVIOUSLY TAKEN OFF THIS DRUG.  HER BACK IS COVERED WITH A RASH AND SHE HAS BEEN TO THE DOCTORS AS SHE HAS BEEN SUFFERING FROM CONSTIPATION YOU ARE IGNORING ELIZABETH’S PHYSICAL HEALTH AND THE DRUG SHOULD BE REDUCED AS IT IS OF NO BENEFIT AND HER DIAGNOSIS FROM OTHER DOCTORS DISPUTES THE LABEL LOCALLY. LIVING WITH MH PROFESSIONALS FOR FOUR MONTHS – NOT ONE OF THEM THOUGHT THAT ELIZABETH HAD SCHIZOPHRENIA.    

The people who have entered the diagnosis details are new names who have not been involved in past care – don’t know if they are social workers and I cannot believe what inaccuracy they have documented and could prove it.  I am stunned by what I am reading here especially an entry dated 01 Jun 2017.  I am disgusted by the comments of multiple drug – this is not true at all.  The only people I could accuse of multiple drug abuse is Enfield Barnet and Haringey MH Trust and I have the files to prove it.  The diagnosis details are a pack of lies – she has never been alcohol dependent – there is some really disturbing things said by complete strangers who are not familiar with the case.  The comments I am reading are heartbreaking.  There is no reference to their own failure they have ripped to pieces my daughter’s character – how nasty can you get.

 “Elizabeth to remain and live at her 24 hr supported accommodation and engage with her support workers”  –  “Elizabeth’s mother or family not to remove her from the supported accommodation or terminate her tenancy without agreement with ENFIELD COMMUNITY MENTAL HEALTH TEAM.  This is hilarious “Elizabeth or her mother or family members to discuss any concerns they may have about her placement at supported accommodation with her care coordinator and community mental health team.”  YES AND THEY TOTALLY IGNORE US LIKE WE ARE DIRT AND WE HAVE BEEN TREATED LIKE DIRT BY THIS PARTICULAR TEAM (ENFIELD COMMUNITY REHAB) .  If she refuses medication staff at ………………….. to report for intervention.   So the accommodation is provided by ENFIELD CCG and Local Authority at £551 per week  – personal budget of £244.44 pw  but I suspect this could much more than this – more like £2000 per week because there is care on top in the form of support workers and what about the drugs.  If you total it all up the actual figure is far more.

To begin with after so long on acute wards Elizabeth found it hard to settle in the community at this scheme.  There was no water or toilet facilities running when she arrived.  She was the only person at this new scheme with one support worker who I thought was brilliant but they got rid of her.  Elizabeth has been advised to attend their centre in Park Avenue but Elizabeth has said “I don’t want to attend I prefer to do my own activities and don’t want other activities to be imposed on me. She has never heard voices yet this is recorded in the report.    It is clear on reading this report that it is NOT my daughter who has the personality disorders and all these labels –  what is wrong with these people who wish to bully, rip someone’s character apart in such a nasty defamatory manner.  How would they like it.  The Past History is completely wrong and has not been amended.   They have failed to monitor Elizabeth whilst on Clozapine as she had stopped smoking when she came home.   They failed to check the file records otherwise they would have noticed that she was allergic to this drug.   Nearly everything is reported wrongly and totally negative.   If the doctors and team were to include and liaise with the family I would not be so unhappy but when you read such comments it is really disturbing and when someone else from another team picks up the file records they are totally misleading.  I wish they would get things right but the mistakes and errors in what I am looking at right now are unbelievable.

It is bad the way people like my daughter are treated.  They are treated like they are sub-human/objects and at the age of 31 no front door key has been provided.  It is absolutely degrading.   She is treated like a child but it is better than a prison locked ward facility full of distressed patients not getting the right care. However as she has no furniture we have ordered her some and have been told by the care coordinator that we will not be reimbursed a penny.   We were told to cancel the order by the owner, the manager of the scheme and care coordinator.    But it cant be cancelled.  We did not just go ahead without asking in the first place.  Why is there no communication.   I am just completely ignored like I am invisible.   The team only contact Elizabeth’s and do not speak to me or include me at all.

I often wish Elizabeth had stayed in Australia rather than come back to this Country who treat vulnerable people terribly.  Sadly I am not alone.   My experience is echoed by so many nationwide who are trapped either in prison-like hospitals or dumped into the community or prisons without proper support or understanding and a CTO is not meant to be restricting but it is –  it is saying “we are providing the accommodation – we are in charge of you – you do as you are told or else –  all about medication not about care and the right kind of therapy or choice –  There is no mention of the many things that have gone wrong under their care –  there is only negativity and appalling labels of no scientific meaning.  There are scathing attacks on my daughter behind her back in the most nasty manner.

A CTO is like a prison sentence – it is State punishment, incarcerating and controlling people so they have no choice in where they can live – deprived of liberty.  They can be bullied by staff with threats of being forcibly returned to hospital if they do not take medication or do as they are told.  It is about treating disabled vulnerable people in a degrading, undignified manner like second class citizens – treating adults like children.     It is all about business and profitable too as a scheme such as this can cost thousands per week.    There are two other residents at this scheme and support workers who are there night and day who learn about prescribing etc on line.

I hope that the law concerning DoLs, CTOs and Nearest Relative is reviewed – the current MHA is not fit for purpose and needs urgent amendment in my opinion and that of many others I am in touch with.   A CTO is degrading and restricting and a new approach is needed.   The amount of money that is wasted on taking the NR to court rather than communicating properly and bothering to work together in an open manner.  To deprive someone’s liberty is the most disturbing thing of all and something needs to be done about it.

The court system is geared in favour of the Professionals who are giving harmful treatment which should only be used in the first instance in extreme circumstances.

The reason we cannot accept any diagnoses through ENFIELD MH is simply because these have been used to cover up the most terrible abuse to my daughter under their care by “treatment” of drugging enormously and I objected to the Council’s Nominal NR having read her report not just going back to 2010.  I gave substantial evidence in court.

So you are forced to delegate the role of NR rather than face enormous costs in court.  Where is the justice?   especially if the NR has a good point as to why the Council would not make suitable NR.

 

 

 

 

 

 

 

 

 

 

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 https://youtu.be/L4X4VBaRJHk  – Just to update this is the link to the wonderful Better Mental Health:  The Beyond Words Approach.

I attended the above conference held at Royal College of Nursing last Thursday along with Sandra Breakspeare (Chy_Sawel) – Cornish for ‘House of Health’  and  another mother, Margarita who also wishes to see the right kind of care provided which unfortunately is not available in the UK.

Following a welcoming speech by Emeritus Professor Tony Butterworth CBE FRCN we  watched a video on the RCN Foundation, including interviews of nursing professionals.

The RCN Foundation is an independent charity set up in 2010 to support nursing staff to improve the health and well-being of the public.

www.rcnfoundation.org.uk

https://scadmin.rcn.org.uk/-/media/royal-college-of-nursing/documents/publications/2014/march/004602.pdf

Professor Tony Butterworth then invited Baroness Sheila Hollins – Emeritus  Professor of Psychiatry; St Georges University of London; Chair, Beyond Words Crossbench member, House of Lords; President Royal College of Occupational Therapists to present her speech on Learning Disability/autism and about effective means of communication with those who have such conditions.

“Listening means paying attention, wanting to understand, to value, to respect, to ponder what the other person says.

Knowing how to listen is a gift which we need to ask for, then make every effort to practice.”

How true this is.

“learning to listen to non-verbal communication, observing pain and anxiety by facial gestures, body positions, sounds.  Baroness Hollins mentioned her son who has Learning Disability/autism.  She spoke of gaining consent without words, to watch for  changes in behaviour and how attention should be paid to environment/comfort/safety and to make necessary adjustments in order to dispel fear and gain trust.

Baroness Hollins spoke of STOMP (Stop over-medication of people with Learning Disabilities).

http://www.challengingbehaviour.org.uk/learning disability-assets/stompfamilycarerperspective210517.pdf

  • Improve understanding of non-drug treatments and support which may help.
  • Make sure people only receive drugs for the right reason and in the right amount.
  • Improve understanding of when they should/should not be used.
  • Empower people with learning disabilities, autism or both and their families with the right information and support.

http://blog.rpharms.com/england/2016/06/02/stop-the-over-medication-of-people-with-learning-disabilities/

https://www.england.nhs.uk/2016/06/over-medication-pledge/

http://www.bbc.co.uk/news/health-33526166

It is a difficult campaign – there is no evidence that giving drugs helps

The drugs have not worked for Elizabeth.

Evidence for pictures is strong –  illustrated books re communication:

  • Supporting understanding through pictures was found to resolve difficulties in decoding words.
  • The pictures helped activate background knowledge, reflect and make predictions about what might happen.
  • A single channel of communication enhances both emotional and factual understanding and this is  really important

Picture narrative (as used in wordless books) is easier to process than:

  • Illustrated written information (as used in ‘easy read format’)
  • auditory or written information

Beyond Words have published 60 books telling health and social stories entirely in pictures.    https://booksbeyondwords.co.uk

Communication barriers  some patients have experienced were listed in the presentation:

  • using long words;
  • being asked questions they cant answer;
  • not listening;
  • overload;
  • not clear;
  • jargon;
  • memory;
  • unfamiliarity;
  • complexity;
  • anxiety;
  • fear;
  • time;
  • strangers.

Consequences of reduced access to good healthcare for people with intellectual disabilities and/or autism are:

  • Higher rate of avoidable and premature mortality than general population;
  • Higher rates of adjustment disorders and depression

 

A brilliant Empathy underpins everything:

  • relational aspect of the clinician/patient encounters
  • treating every patient with respect

there is much too little research in learning disability”

A really interesting presentation by Baroness Sheila Hollins which I could associate with and I wish my local area would take her approach.   Whilst I agree relationship with the treating clinician is important unfortunately so far we have never had a good relationship with local clinicians who do not wish to listen and ignore other professional opinion.   Hopefully Dr Ilyas Mirza will be different.

After the conference I spoke to Baroness Hollins and Professor Butterworth and shared our experience of care in Enfield and mentioned my story ” get-her-back-we-are-paying-for-that-17-05-15 “.

I mentioned I had found excellent care through http://www.working-to-recovery where she stayed with MH professionals of many years experience.  Elizabeth travelled from Scotland to so many wonderful places such as Bilbao, Carcassone, Marseille, aix en provence, Lyon, Paris (for the World’s Hearing Voices Congress).  In Paris Elizabeth stayed on a house boat and then to Caen, back to Glasgow to catch the flight via Dubai to Australia where she had Elizabeth had the opportunity to work with international MH professionals which included therapy such as music/art and psychotherapy.  The MH professionals concluded “we believe the more we get to know Elizabeth there are learning difficulties.  She needs to do everything slowly and will need some support for quite a while”.  Working to Recovery have recovery houses in Australia where professionals work with people through therapy not drugs.  I wish there was such a facility in the UK as we saw amazing results when Elizabeth returned to the UK. This care cost a fraction as compared to  Cygnet and Huntercombe prison type facilities and was very positive experience for Elizabeth resulting in enhancing confidence.   Not only have the private MH professionals feel that Elizabeth had a LD, Huntercombe assessed her as having high functioning Aspergers but they have so far not released the report despite repeated requests and consent.  Elizabeth is entitled to see this and was entitled to also see the report stating complex PTSD when she was at Cambian in Wales.

I mentioned to Baroness Hollins of our experience locally and how Elizabeth has not had a proper assessment independently however was found to have full capacity recently.

My local area (Enfield) have over-drugged Elizabeth but so has the Royal Bethlem Hospital (National Psychosis Unit) where  “its all about Clozapine here – you should have done your research”.  Despite an Advanced Declaration which was ignored The Royal Bethlem gave Metformin together with Clozapine which is contra-indicated. I was banned from visiting and was threatened with arrest when I found out, by staff who wore name badges back to front.  Here is the Medication as listed in the files:

  • Clozapine liquid 150 mg BD (level 0.37 on 3/7/12
  • Bisoprolol 1.25 mg OD
  • Metformin liquid 500mg TDS
  • Multivitamin T OD
  • Aqueous cream
  • ADcal D3 1 tablet BD
  • Omega 3 fish oil T TDS
  • Lorazepam 1-2 mg BD PRN
  • Promethazine 25-50 mg BD PRn
  • Olanzapine 10mg IM OD PRN – this was raised to 30mg

During titration of Clozapine Elizabeth developed tachycardia.    She experienced  dizziness whilst starting Clozapine.  she was noted to have a raised eosinophil count.

Quetiapine XL 750 mg ON – decreased to 600mg 20.04.12

It is not true as stated in the files that  “Clozapine was helpful”  – I can get so many witnesses to say the contrary and that in fact it caused injury.  IT WAS AGAINST HER WISHES TO BE PUT ON THIS – SHE LOST CAPACITY AS STATED IN THE FILES AND THAT IS WHEN THEY TOOK ADVANTAGE.

Cambian in Wales continued with this drugging regime until I queried with the GP in Wales about the Metformine and he did not know what it was being prescribed for but I found out that this should only be prescribed by an Endocrinologist so obviously they found something physically wrong and I spent a lot of money on tests privately which proved my point.

Private mental health experts we paid for through “Working to Recovery ” discovered LD and complex PTSD.  Huntercombe (high functioning Aspergers).  However I would disagree with them that an ATU is the right place for Elizabeth.  I believe a therapeutic community or care farm is the right environment but Elizabeth has been placed in the community not far away from home.

I took the opportunity of speaking to both Professor Butterworth and Baroness Hollins about the degrading treatment Elizabeth has had in Enfield and other private institutions.  I do not think that Elizabeth has not seen a second opinion doctor despite there being huge conflict of opinion on diagnoses in the files.

All Elizabeth needs is kindness and understanding and all she wanted was friends which she has gained by being back on the wards and they come and visit her.  Everything that Baroness Hollins spoke of made sense to me.  Elizabeth has had brutal treatment under so called “care” by professionals – where is the evidence she has “Emotionally Unstable Personality Disorder” when it should be “complex PTSD just like Dr Bob Johnson states in his report for court purposes.  Elizabeth has the condition of “Selyes Generalised Adaptational Syndrome – sustained stress caused by Endocrine disruption.  How true this is and I have proven through Endocrinolgy tests everything.  I have also had the P450 liver enzyme tests done.  I showed them the test results to Professor Butterworth and gave him a copy of the results that state “poor/non metaboliser” .  I also told him that I had recently spoken with Professor Pirmohammed who said that these tests will be widely available under the NHS in the near future although I spoke of very urgent cases I was in touch with who need the tests sooner rather than later ie those being held “prisoners” and drugged at enormous levels in institutions.   Instead of wasting money on private “prisons” and ATUs there should be investment in research on drug adverse reactions and these important P450 liver enzyme tests allowing the lowest dosage of drugs to be prescribed to avoid adverse reactions regardless of whether someone has a learning disability or MH condition.  Such funding should be given to Universities such as Liverpool and Lincoln where Professors are doing important research.   Less drugs should be prescribed in accordance with guidelines -The Mimms Handbook of Psychiatry advocates the use of the lowest clinically effective doses of anti-psychotic medication to avoid adverse effects.  The dose should be carefully titrated to provide optimum balance between good clinical improvement and the fewest side effects.   Elizabeth suffered involuntary muscle movements, tremors and neuroleptic malignant syndrome on Clozapine whilst at home – neurologic toxicity.

Whilst at the conference I also showed the petitions of Gillian Speke and Tracy Best as well as  the shocking pictures of Elizabeth Before and after “treatment”.  Attached to the petitions was a list of the drugs prescribed at huge dosage.  Something needs to be done about this.  Both were at Cygnet Hospitals but it is not just Cygnet who prescribed at enormous levels – there needs to be proper monitoring in this connection.

At Moti Villa Elizabeth was multiply abused and she is therefore a trauma victim and according to NICE Guidelines drugs do not work for Complex PTSD.  I would have had no objection to Section 3 if the right care was given such as:

  • Psychodynamic therapy
  • Psychotherapy
  • Eye Movement Desensitization and Reprocessing (EMDR)
  • Cognitive Behavioural Therapy
  • Group and Family Therapy

With regard to the latter I as a mother an excluded but we would have liked Open Dialogue but sadly it is a Post Code lottery.  Here is what my local area of Enfield under Adult Services have to say about Open Dialogue in their Annual 2016/17 Report:

“We have been investigating alternative models of mental health care since 2015 and over the last year have been trialling an approach known as “Open Dialogue”. Developed in Scandinavia it involves focussing on relationships and dialogue with family and friends rather than concentrating on symptoms which is the usual approach of traditional services.  Medication is still used although research to date has shown that it is not needed as much and that patients have better long term outcomes. 13 staff are being trained during 2017 over four residential training weeks.”    Well why haven’t we as a family been included in this trial.

Elizabeth has made some very nice new friends on the wards recently.   All that Elizabeth wanted was friends.  Whilst Elizabeth is placed under the current scheme on a CTO she did tell the team that she could not guarantee that she would stick to things in the community.  This is why CTOs are a waste of money.   One of the major issues is being forced to take drugs that should in fact only be given short term not long term according to manufacturer’s instructions.   The problem is that the local team will not budge on “paranoid schizophrenia – treatment resistant” and “emotionally unstable personality disorder”  –  I see this diagnosis as an insult when Elizabeth was  badly abused under the scheme Moti Villa as on CCTV which the police could not find. NOTHING WAS CONSENSUAL SO PLEASE STOP TRYING TO MAKE EXCUSES.

Elizabeth has not met her new Consultant Psychiatrist Dr Ilyas Mirza yet.  I doubt I will ever get to meet him as we seem to be excluded from the Open Dialogue trials.   Elizabeth was on 2mg of Rispiriedon – an anti-psychotic drug licensed for patients with Schizophrenia and Bi Polar.  Elizabeth has complained that the drug has made her feel very tired and in her own words “I cannot stand any more Mum”.  Elizabeth announced last week that she is no wishing to take any more of this drug but I advised her not to come off it without discussing things with her Doctor and negotiating a slow reduction like Dr Ann Blake Tracy mentions however Elizabeth did not listen.  So this coming Monday there is a meeting at her scheme that I have not been invited to.  Elizabeth wanted carers and therapists she is familiar with to attend this meeting –  I would have preferred her to come off this drug slowly but I think that this should be monitored by Dr Moncrieff and her researchers under the RADAR scheme.

Finally  Chy-Sawel (Cornish for ‘House of Health giving’ chy-sawel-project.co.uk is featured in “Cornish Christmas Giving Catalogue”.  Donations can be given via the website of Chy-Sawel (chy-sawel-project.co.uk).

“Chy-Sawel is Cornish for ‘House of Health giving’ which rather aptly describes the primary aim of the Chy-Sawel Project, to establish a ‘Healing House’ Treatment Centre that will provide respite from prescriptive medical practices.  Instead of a reliance on pills, Chy-Sawel hopes to improve mental health by utilising the latest advances in blood testing, alongside an holistic approach, encompassing a nutritious diet, practical activities, exercise, talking and creative therapies.  Helping get lives back.” 

Wonderful!  this is exactly what I and other mothers would like to see.  If only we can have this kind of care in the UK – much needed choice and also the recovery houses and unique humane approach of http://www.working-to-recovery in the UK based on the wonderful care that they provide.  We did not recognise Elizabeth when she came back from Australia.  Why cant this be provided in the UK instead of private prisons costing £13000 per week.

About the Speakers of the Conference “Better Mental Health – Beyond Words Approach”:

https://www.gov.uk/government/news/professor-tony-butterworth-cbe-confirmed-as-acting-chair-of-the-nhs-institute-for-innovation-and-improvement

https://en.wikipedia.org/wiki/Sheila_Hollins%2C_Baroness_Hollins

I thoroughly enjoyed the conference and your presentation.

I hope to come again to other wonderful events at the Royal College of Nursing and I would like to know if I can have the link to the recording of this sold-out conference to put on my website.

And finally to Baroness Hollins – I shall write to you privately –  I wish that more professionals would have such an understanding as you have in communication with those who have LD/Aspergers.

I don’t know what Dr Mirza will do about Elizabeth.  They might as well get rid of the CTO and instead give Elizabeth more therapy of the correct nature.   Baroness Hollins suggested RESPOND and I have previously asked for this.  I will keep you all informed.

 

 

 

 

 

THIS HOUSE BELIEVES THAT FUNDAMENTAL REFORM OF THE MENTAL HEALTH ACT IS REQUIRED TO REDUCE DISCRIMINATION AND UNNECESSARY DETENTION.

PROFESSOR ANTHONY DAVID – CHAIR

PROFESSOR GEORGE SZMUKLER (Emeritus Professor of Psychiatry and Society at              the Institute of Psychiatry    (For)

THE RT HON NORMAN LAMB MP (British Liberal Democrat Politician and Solicitor.  MP for North Norfolk since 2001.  Chair of the Science and Technology Select Committee.  (For)

AGAINST:  PROFESSOR ANNIE BARTLETT

AGAINST:  Professor Scott Weich – Professor of Psychiatry (Institute of Psychiatry)

 

E – petitition

Corinne

SANDRA BREAKSPEARE OF CHY_SAWEL WRITES:

My son has been in the mental health system for almost 28 years.

Despite all the interventions of psychiatry he has for the last 18 years been detained in various mental health hospitals and is delusional on a daily basis.

He has been given almost every drug in the system and also ECT so if this is the current cutting edge of scientific treatment why hasn’t he had some sort of recovery rather than sink deeper into the delusions he lives with now??

He wasn’t even 23 years old when he had his first psychotic episode which was brought on / due to a so called friend giving him LSD at Christmas 1989, he is now 51 he will never get those years back.

With my feeble brain I think if LSD a mind altering chemical can cause damage which it did to my son how can pumping him full of more mind altering chemicals help?? Over the years  I have seen many patients in the hospitals even longer than my son.

There definitely needs to be a new mental health act with psychiatry being brought into the 21st. Century with a more compassionate, humane way of care, dignity and respect for their suffering. Treating the whole person and not just the symptoms with the chemical restraint of today’s treatments

I vote for a NEW MENTAL HEALTH ACT.  –  Sandra Breakspeare.

(Mother/  Trustee) Chy-Sawel Mental Health Charity.

ELIZABETH ALSO VOTES IN FAVOUR OF A NEW MENTAL HEALTH ACT SO DO I.

What about all those locked away  who could not attend the debate – I would change the title of this event to read:

“THIS HOUSE BELIEVES THAT THE FUNDAMENTAL REFORM OF THE MENTAL HEALTH ACT IS REQUIRED TO ELIMINATE ABUSE, DISCRIMINATION AND UNNECESSARY DETENTION.” 

I attach a few links to my blog to highlight the need for change.

“GET HER BACK WE’RE PAYING FOR THAT” :-  A true story of how we were treated back in 2014 when Elizabeth did not wish to return to the care home provided by Social Services hundreds of miles away where she had no food at the weekend (as per files) and was asked to choose between Mum and Dad.   “We are not speaking to you any more Ms Bevis as Mr B is next of kin”

ROYAL COURT OF JUSTICE – DISPLACEMENT OF ME AS NEAREST RELATIVE  –  Fancy turning up at the court having been told the time at midday, having been given hardly any warning with just a couple of hours to get to RCJ, and not having been given the correct court number.  I ended up attending the wrong court in the wrong building whilst proceedings took place elsewhere.

HOW A TEAM GANGS UP  –  Yes they certainly do know how to gang up and mental health law can easily be usurped.

Adult Treatment Units to ‘Community Living’ – Turf War for Billions ? — finolamoss 

SECTION 17 Leave  –  Talk about stigma!  This is treating everyone like criminals.

YOU WILL LOSE ME FOREVER IF YOU ARE NOT CAREFUL, MUM   –  this can easily be done when a team send someone far away and take away the phone.  For instance I have a note from someone from SLaMs legal team “you may wish to consider taking the phone away as this is a means where mother can remain in contact”

ABUSE AT BETHLEM ROYAL HOSPITAL  I will never forget this prison and yet they could not get rid of me fast enough.  I was threatened with arrest. “its all about Clozapine here – you should have done your research”    They succeeding in putting her this and when I saw Dr MacCabe at the Maudsley Debates I was quick to say what I thought about this chemical he seems to support so highly in his presentations.

DRUG INDUCED PSYCHOSIS AT THE BETHLEM HOSPITAL

Professor George Szmukler spoke of the differences between physical and mental health and how patients are treated and whilst someone can refuse treatment for physical health under the mental health matters were very different and described a case of someone refusing physical health treatment who had capacity. He then stated if this person had a mental disorder and made the same responses under MHA compulsion is based on two different criteria “risk to self or others” (disorder plus risk formula).  The autonomy or self-determination of people with mental disorders is not accorded the same respect as is given to all other patients.  A psychiatric patient’s ability to decide for him/herself can be ignored; nor is there any notion of ‘best interests’ from the patient’s point of view, largely according to his or her deeply held beliefs and values –   not what the doctor thinks is best.

Mental health law formula has not changed for over 200 years.  The recent turn in medicine from paternalism – doctor knows best – to patient self-determination, sadly, has passed psychiatry by.

He spoke of ‘Fusion Law’ – a generic law applicable across all medical specialities in all settings. Where a person has a difficulty in making a serious treatment decision, involuntary treatment would only be permitted, first, when objecting person is unable to make a decision for themselves – from any cause (whether physical or mental disorder) – and second if treatment is in the person’s best interests.

The solution for eliminating that discrimination is a generic law.  Northern Ireland has taken the ground-breaking step of enacting such a principled, rights-based law.

I would add that once you are declared ‘mental’ no one looks at physical healthproblems as it is not profitable.

THE RT HON NORMAN LAMB also delivered a good speech in favour of change to the MHA and I agreed with what he said especially with my own shocking experience of the MHA and being the Nearest Relative that the team want rid of and constantly having to go through court.

Its impossible to fight a political system unless you change it. 

I mentioned to Mr Lamb about private providers such as Cygnet, the cost per week of such facilities and how they have not benefitted Elizabeth and she had come out worse from Cygnet Stevenage.  They are not offering the right kind of care, patients are trapped on wards and not allowed out.  I distributed the petitions of Gillian Speke and Tracy Best and had photocopied these to highlight the failure of the MHA in keeping vulnerable people incarcerated at huge cost hundreds of miles away from home and family.  They are just left to deteriorate on wards.  Whilst other NHS services are drained of funds there is huge provision for these expensive all for profit prison-like facilities under the MH.  These facilities seem provided by NHS England.

There seems to be no support in the UK – seems to be all about max profit and no accountability.  Cygnet for instance is one of the main venture capital max profit providers whose hospitals charge £12500 pw.  I understand Cambian are also taken over by Cygnet’s owners UHS. Simon Stevens (Director NHS England) was once CEO.

The other speeches were good also but I believe only if there is change to the MHA can discrimination and abuse be ended and I think if things are left as they are then things will become worse.   There are a lot of people suffering right now and deprived of contact with their sons and daughters.

The law needs to be changed surrounding Nearest Relative –  I have been taken to court so many times and treated like a criminal.  There needs to be political change to restore separation of powers and rule of law.

The law needs to be changed surrounding MCA/best interest and in cases where there is lack of capacity, Court Orders restricting freedom of speech.  Every assessment should be done independently, not by AHMPs.   Elizabeth has fortunately been found to have capacity.

The cases mentioned above are just a few I am in touch with, who would all be in favour of change in the MHA.   Lastly here are the votes.

Voting - 56 Maudsley Debate

Unbelievable!  –  I doubt there was that many in the audience who were affected by the true reality as reflected in these votes.   This shows that the majority do not have an understanding of the effects of such an unfair system with a MHA not fit for purpose in my opinion and of the opinion of many others also badly affected and let down.

Panel - 56 Maudsley debate

MESSAGE TO THE RT HON THERESA MAY PRIME MINISTER

After the debate there was a reception with drinks and canapes –  I took the opportunity to speak to a few people about the petitions and cases I am in touch with because of the failure of the MHA.  Just look at the case of Sandra Breakspeare’s son.  All have family who deeply care and look at the situation.

I would like to see urgent changes – it is appalling how people are treated in the UK both patients and their families.

 

 

 

 

 

 

8 years trapped in cygnet             Elizabeth has been under two Cygnet Healthcares – one in Cygnet Stevenage and one that is supposed to be the flagship in Beckton.  I have been to their conference at the Royal College of GPs and I went with someone I know who has a brother in this expensive private hospital who wishes to be transferred elsewhere.   I was extremely interested in the conference which was very well organised and took part in a workshop called “least restrictive care” –  well I had to say what I thought –  Elizabeth thought it was like prison and I could not disagree with this description.

Most disturbingly, drugs are given at enormous levels to some patients. I list below the drugs given to the young person photographed above who has given her permission for her case to be made public as she would like to leave Cygnet and be nearer her grandmother and I have evidence of this.  Elizabeth was on the same ward at Cygnet Stevenage and then this young lady featured was transferred hundreds of miles away to Derby just like Elizabeth was tranferred to Cambian in Wales.  Elizabeth had the drugs increased to 20mg of Aripiprazole at Cygnet Stevenage – a drug I had to report for adverse reactions – Yellow Card.  She was unstable when she came home.

However, even more disturbing is the huge level of drugs given to patients who may not have a regular visitor – who become stuck under “care” in a system rotten to the core where there is no accountability.  I therefore feel it is very important to speak out and reveal what one young person, who has been stuck in Cygnet for 8 years, is receiving in terms of shocking “care”.  The question is just how many other patients are being given drugs at this enormous level against all guidelines.  There needs to be a full enquiry into this.  Why isn’t there any accountability for treatment such as this?  What I am documenting is a real case of someone who is desperate to be released from a never ending prison sentence and has done nothing wrong under the care of Cygnet private hospital DERBY.  What kind of Doctor prescribes at such huge levels against all guidelines to a young person who is kept a virtual prisoner.  How many more are being treated in this way whilst the Government does nothing.  Who is responsible for this abuse?   Who is paying for it?” –  which Local Authority or Trust is responsible?  Well I have since found out it is Special Commissioning NHS England so I believe.  I hope that something will be done urgently about this as lives are at risk –  are there any more cases like this on the ward?   To think that this is “care” in the UK.   It’s not about stigma –  this is abuse.    Any more cases like this – please contact me.  I shall keep you all informed as I’m in touch with lots of other similar cases.

Regular Medication:

Sertraline 200mg mane; Depakote 750mg BD; Mebeverine MR 200MG BD; Metformine 1G bd; Atorvastatin 40mg OD; Omeprazole 20mg mane;  Furosemide 50mg mane; Dapaglifozin 10mg mane; Diazepam 5mg TDS; Colecalciferol T OM; Kwells 300mg TDS; Clozapine 225mg BD .

PRM Medication:

Ibrufen 200-400mg up to QDs; Epipen 0.3mg up to 0.9mg; Cyclizine tab 50mg up to 150mg;  Procyclidine 5mg PO max in 24 hrs 10 mg; Olanzapine 2.5-5mg max 200mg (PRN + regular); Promethazine 25-50mg max dose 100mg in 24 hrs;  Salbutamol 100mcg; Glucogel/Glucsgon T; Corsodyl ; Lactulose;  Stat dose of Clopizol Acuphase given on 3 occasions since admission – forcibly injected.

Estimated stay at Cygnet 2 – 3 years but this young person has been in there 8 years.

As Inspector Brown (Mental Health Cop says – “what the hell is going on”  Cygnet are making huge profits by drugging up vulnerable patients who they think do not have anyone who cares for them.

A Life has been lost on the ward in question – now in touch with the mother.

Are they trying to kill their patients – what kind of doctors prescribe this amount of drugs concomitantly.   Cygnet – what’s your answer to this – lets hear it on Twitter!

Here is a response from someone who is an expert on the drugs:

“This is an even more ridiculous dosing regimen than I have ever seen.  SSRI’s with atypicals are totally rejected in the Maudsley prescribing guide and Mimms.  Benzodiazepams, SSRIs and Atypicals even more idiotic.  What is the procyclidine for?  there are no neuroplectics in that list that justify an anti-parkinsonian agent.  This dosing regimen is utterly ridiculous and very dangerous.”

Are all patients under Cygnet under this huge level of drugs.  Questions need to be asked before yet another life is lost on this ward.  There has already been one death so I heard.

Any National Newspapers interested in documenting the widespread abuse of vulnerable people in the UK please do contact me.

 

 

The RC from Suffolk Ward is not in any hurry to discharge Elizabeth from Section 3 even though of no risk to self or others.  I’ve no idea how much longer she will be held on that ward. I thought there was a shortage of beds but obviously I’m wrong.   Elizabeth has said they wish to keep her longer –  I will keep you all informed as to why.  The truth always comes out in the end no matter how much secrecy the team like to play on.

More positively –  I took Elizabeth out every day over this Bank Holiday weekend.   I drive just to get away from the hospital and local environment.   Yesterday a wonderful visitor came to see Elizabeth –  one of several important ‘advocates’ who has therapeutic skills.  Will tell you more in future.    Friends like this who think of others before themselves when time is so precious are invaluable especially when someone like Elizabeth is stuck on a locked ward and restricted in leave.  There are several people who have gone out of their way to take an interest and care which is so encouraging for Elizabeth and I am extremely grateful.

Yesterday we went for a drive into the countryside.  Today we went swimming and every Sunday I will offer to take Elizabeth swimming so she can build up her confidence.  Her technique had already improved by the end of her swimming session.    I once did competitive swimming myself so was able to teach Elizabeth technique.   I will provide a membership for her eventually.

There is no communication – confidentiality played upon – no one wishes to inform you as to release date.  In my opinion and that of other doctors, this is not the right environment for Elizabeth.

I would question why the right environment is not being provided anywhere in the country as a noisy acute ward is no place to get well for someone with PTSD or those with Learning Disability/Aspergers.  It is not the right environment because there is nothing to do at the weekend,  there ought to be facilities such as swimming pool, gym/sauna but no one cares about MH in my local area so it would seem.    Vast sums of money being spent on private sector “prisons” instead of invested in good facilities that could provide suitable therapy to make people well.    People under MH get dumped into the community in schemes full of control where they are given nothing to do.   If everyone had a personal budget to choose which support worker they wished to work with, what activities they would like to do  – this is what should be provided rather than an expensive PICU or acute ward through Cygnet, Cambian or Huntercombe.   Sometimes vulnerable people are kept for months and months on end like prisoners in institutions such as these.  I would like to know how many exactly are being held in institutions who have suffered long drawn out tribunals etc.

I will keep you all informed.   At least now she can get out at the weekends and during the week can go for a walk in the grounds etc.  That is something and also after quite some time Elizabeth has had the ban lifted on seeing family outside of the ward.

 

 

 

Elizabeth remains on Section 3 (no risk to self or others) but it would appear that the team want to hang on to her longer in an environment (an acute ward) where other Doctors feel is totally wrong.   Last Friday, Elizabeth told me she visited her scheme which had been left open for her return again.  The scheme is situated a distance from the hospital and you need to go by transport.  I was surprised that she was left to visit alone but, at the same time, I was pleased as it shows Elizabeth is capable but she was anxious and upset at the length of time waiting for buses. It will take time for her to adjust and regain confidence.  Elizabeth spent a few hours at the scheme and there seemed to be no changes in staff, apart from the fact the very nice care support worker was no longer there I was disappointed to hear.   Elizabeth especially got on well with 1 support worker and Elizabeth had gone out of her way to find where she was.    I  was impressed with this member of staff who very dedicated and had that special quality in terms of her understanding of Elizabeth.  When she was not there, Elizabeth once said “no one understands me Mum”.  Certainly no-one understood what it felt like coming off drugs after so many years and this was a scheme like many others who encouraged the taking of anti-psychotic medication etc. I’m sad that this wonderful member of staff is no longer there and maybe she now works at another scheme and  I wonder why she left?

What went wrong at the scheme:

When Elizabeth was discharged from hospital there was no running water and no toilet facilities until late the next day.    The care coordinator recently tried to deny this.  Elizabeth asked me to visit the day after her arrival when services had only just been restored – this was late afternoon.   There were no cooking utensils or pots/pans etc.  I was surprised they could just discharge someone from hospital in such circumstances.  My first impression was – nice house – nice area close to all amenities -most of all a brilliant support worker and it is not often I can say this.    I later brought round garden chairs, Barbeque, saucepans and cooking utensils and a fridge for Elizabeth.     This scheme has not worked out for Elizabeth on two occasions so far.   She was drug free on both occasions but her behaviour could flare up if put under pressure by staff as Elizabeth was adjusting to new surroundings.   Elizabeth was immediately encouraged to participate but not everyone understood that she was not feeling very well –  she was complaining of physical/chronic pain and she was not given time to settle down and do things gradually in her own time and this is why it failed.   She needed time to adjust to new surroundings after weeks on various acute wards that had further traumatised her and should never have been rushed.  She could overhear staff members conversations to the effect they did not think she was doing well -and felt under pressure knowing she was on a month’s trial.  She did not wish to attend meetings which her care coordinator (known to our family since the 2014 court of protection case) tried to arrange so soon after arrival.  Pressure such as this triggered her behaviour and she acted in frustration and they have a zero tolerance policy and staff will threaten to call police unlike the private professionals we provided who could deal with any situations by talking therapy.  However, there was one outstanding support worker who had quality in knowing how to deal with such situations and understanding  when to stand back and give space.  Even if someone has loads of qualifications sometimes they lack insight.   I am astonished at some of the things the care coordinator has written, especially in the safeguarding minutes which I have.   A care plan she produced omitted huge chunks of information and only “paranoid schizophrenia” was stated as diagnosis, totally disregarding other doctor’s professional reports and opinions which I have.  I would therefore regard this care plan as being wholly inaccurate.

Further Comments:

I would like to correct recent wrong allegations/accusations that I did not request medication being stopped recently.   I was far from happy to learn that an addictive drug such as Lorazepam was being offered at regular intervals several times a day at this scheme by care support workers.  This drug should only have been given as and when required.  This was another reason why Elizabeth was getting upset.  Elizabeth was allowed to stay drug free on the NHS wards at her own request but she was in the wrong environment and able to witness the horrific things that go on to other patients on these wards. It can take five years to recover off psychiatric drugs so I have heard.     It might have worked out for her if she had been placed in a peaceful natural environment not an acute ward or a scheme where she was being put under pressure and no one understood that she was experiencing chronic pain.   There is not enough knowledge by doctors on withdrawal and the side-effects of this, misinterpreted as symptoms of “illness” so I am delighted that Dr Joanna Moncrieff is doing research into this right now.

I am now told by Elizabeth that her care coordinator thinks she would benefit from a longer spell in a psychiatric hospital.  What does she mean!   I would state that she is a “prescribing nurse”  – who has very strong conflicting opinions against that of several doctors who all state that acute/PICU wards are the wrong environment.   A prescribing nurse/care coordinator knows seems to know better than any doctors in my area to come out with opinions like this which I would say is very wrong.     There seems to be such huge divide in opinion by various professionals as to what is right or wrong for Elizabeth who have been involved in Elizabeth’s care or asked to report on same for expert opinion.  I would say environment is one of the most important factors. A peaceful natural environment is best.    I feel The reason things did not work out for Elizabeth is that she should have been given time alone to settle before being pressurised to attend meetings. Things like monitoring progress and procedures should wait until someone settles down first and not enough consideration was given in this respect.

I have just spoken to Elizabeth and told her that I am busy writing my blog which she knows all about.  Elizabeth has written herself on this and if she feels up to it I will go through her wonderful notes on Australia later and we will produce the second part of  “My wonderful Care”  To recap the first account of the wonderful care we provided was all about Scotland France and Spain and Elizabeth has kept a diary of her time in Australia too and Elizabeth likes writing.   Elizabeth could not wait to get away on holiday to Scotland and liked it so much that she wanted to stay longer and nothing could have persuaded Elizabeth to stay longer if she was not enjoying her time away.  She was with mental health professionals who had outstanding unique ways of dealing with trauma and used therapy instead of mind altering chemicals.   Pity we do not have care like this within the mainstream system.  Elizabeth said there was not enough talking therapy and something needs to be done about this as if less money was spent on the private sector then there would be more money available to spend to improve local care and I think a complete change needs to be made as there is so much wrong with the current system.

I am so pleased that Elizabeth’s progress is good as she has been through enormous ordeal and I put this down to the fact that she has learned a lot during her time away through http://www.working-to-recovery.  Now she has happy memories to look back on unlike before.  Anyway yesterday we had a good day out.  I had to take my car to the garage first as having just had it serviced  there was a problem but after this, we went out for dinner and did some shopping. Whilst out, we talked about the scheme in the community.    I just said to Elizabeth that surely this is better than where she is now on an acute ward and she agreed and only hope she settles without the pressure from certain members of staff to attend meetings.   I feel that Elizabeth has had a horrific time being sent from one shocking “hospital” to another (some that are more like prisons)  at least she would not be quite so restricted.   There are good amenities nearby to her scheme that she could join things and go out on her own so there are lots more options.   There are facilities such as  gyms, doctors/dentist, physiotherapists all close by – with good transport to get to areas further afield.  When she is confident enough she could meet me after work in London as the scheme is not far from a tube station.  The most crucial thing of all is how staff deal with Elizabeth and how she responds but I have said to her that if she is unhappy there are plenty of other options and she go out to get away from things. They need to give her a front door key as it is not good when you cannot get back into your home and have to rely on staff to open the door.   Right now on Suffolk Ward even getting off the ward is a problem with some staff making an issue.   Some staff are of the opinion that Elizabeth is not allowed out to see me at all like before.  They are either not informed or do not read the Rio notes properly.   I have come across treatment at Cambian and the Bethlem where staff tried to restrict contact between myself and Elizabeth –  Cambian even gave supervised phone calls and tried to make out it was Elizabeth’s idea which was untrue. On Suffolk ward they try to make out that Elizabeth does not want me to have any information – this is not true either.  They achieve this by having her in first at meetings amongst the staff and then I was called in separately but when I asked if Elizabeth could come in and join the meeting with myself staff quickly spoke for her and made an excuse.   It is pretty obvious that it is the professionals who do not want me to have any information and not Elizabeth.   Even with an advocate present this means nothing when surrounded by 6 staff, several of whom are doctors.  I think it is undignified treatment when someone encounters problems in coming off the ward and also when a member of staff refuses to disclose the basic of information such as where Elizabeth had been transferred to stating it “confidential” – I was at the time the Nearest Relative too so they did not wish me to know.  It was Elizabeth who told me she had been sent to “Huntercombe”  in Roehampton and she was having to use the hospital phone as they had confiscated her camera phone.   Now they have gone and lost this camera phone and I made a big fuss about this phone being taken away from her and I am still waiting to get it back and it would now appear they have lost it.    Huntercombe have corresponded to the effect that Elizabeth has signed for all her possessions but I was there on her arrival back to Chase Farm and that phone was missing and now I want the phone replaced as it is only fair that Huntercombe replace it.   I will let you know how I get on as I think they are trying to get out of this by arguing.  It is a matter of principal in my opinion.

Getting on and off a ward can take some time especially as there is not enough staff sometimes to deal with things.  A patient might be stuck outside their offices for a long time whilst staff are too busy in that office to deal with them.   Anyway eventually Elizabeth came off the ward yesterday and we could go out.

Whilst out Elizabeth enjoyed her time with me to the point that she said she would like to ask for more leave than just two hours a day.   In fact we were out much longer as I had trouble with my car but no one was chasing to see where we were.

The other thing that is evident is that staff like to put patients down and do not encourage them.   It is different from the care we provided in Scotland, France, Spain and Australia by “Working to Recovery” .   What a fantastic job they did.   In contrast when you look at the remarks by doctors, care coordinators, social workers and psychologists/nurses under mainstream care there are very few nice and positive remarks. There is nothing nice said about me as you can all imagine.   As regards Elizabeth they paint a bleak picture of someone who is complex and make that person out to be far worse and say things that are completely wrong/inaccurate.    Past history needs correcting – I told the team this many times.  I hope you are all reading this team!    I have re-written an accurate account of past history in “Summary of Care”  This needs to be included in the Rio Notes.  If you do not make necessary adjustments mistakes can occur in treatment.     I need confirmation that this is done.   Please can someone from the team confirm to me that you have amended “Past History”.

Private MH professionals saw no sign of psychosis during Elizabeth’s stay with her and recognised there could be a learning disability but there is contradiction in comments by certain professionals.   I can understand why Elizabeth does not like meetings – words can be twisted and the result is minutes and reports are inaccurate and need to be corrected.  The team can wrongly document or have misunderstand from a communication point of view as seen from the certain minutes and file notes.  This is a ward specialising in MH problems not complex PTSD or Aspergers so this is where the problem lies. Before meetings in the community take place, Elizabeth should have an independent advocate present at all times but I think that it is ineffective when the advocate comes in to a meeting and opinions are sought from Elizabeth.  I think that the Advocate should have discussed opinions first and then to be sure Elizabeth should be invited into a meeting with me and others afterwards.   It is against the Code of Practice of the Council and Trust not to provide an advocate and this is extremely wrong.  I have quite rightly had to complain about this and I look forward to seeing that changes have been implemented after the last safeguarding meetings.  It is wrong that every email and correspondence from me is to referred to the Deputy Leader of Quality who also chooses not to respond playing on confidentiality with the excuse of “resourcing” that they must think of saving money but this is laughable when you think what huge money is being spent her night after night on an acute ward c£900 per night and then Huntercombe and two Cygnets it strikes me that there is huge money in the local area so what is the cost of a response to my email in comparison?  The truth always comes out in the end no matter how much you play on confidentiality and Elizabeth is keen to discuss.  Elizabeth’s wish is that I “do something to change the rotten  system” but I do not know where to begin – it is a mammoth task that should be tackled right at the top at Government level.  Well I am only too happy to document what is wrong with the current system – EVERYTHING! and what changes should be made.

I will end my blog to say IF ONLY THERE WAS OPEN DIALOGUE – IF ONLY WE COULD HAVE BEEN TRANSFERRED TO DIALOGUE FIRST –   why does my local area not move with the times? – there would not be this problem of “resourcing” as I would not have any complaints for them to answer.  There would be proper communication unlike at present.

Message to the Team

If I was employed in Quality the first thing I would do is to make things open and honest and give an option to everyone as to whether they wished to be involved with Open Dialogue.   When we did Open Dialogue at ISPS I was impressed by professionals from other areas and Elizabeth did most of the talking all about when we were taken to court in 2014.   I must join again as they have some good events and this one was held at Leicester University.  I did not see anyone from my local area there yet there were social workers and professionals, including psychiatrists from other areas and it is a shame that Enfield is behind the times.  Thank God there are doctors such as Dr Russell Rassaque and Dr Moncrieff who are not afraid of change.    We met the criteria for Dialogue First on Elizabeth’s return from Australia but our request was denied and I would like to know why?   At ISPS regardless of whether you are a service user, a carer, an alternative practitioner, Doctor, social worker, nurse or any other professional everyone got treated the same and there were no barriers.   Why is this not the case locally?   Why aren’t carer’s and service users listened to and treated like they are nothing/invisible?   If a carer or service user dares to complain why are they treated with such contempt and why is there so much bullying against anyone who they should be working with and not against.    No, it is not impossible for me to work with professionals –  it is the professionals who do not work with me.    I would quote Dr Bob Johnson – “truth trust and consent” and I would recommend the team read his book called “Emotional Health” and  also “Images of Trauma by Professor David Healy.

Last of all Elizabeth said yesterday she would like more than just 2 hours leave and I hope that this can be accommodated –  it is wrong to assume that Elizabeth could ever be forced to doing anything she did not wish to do as she has a mind of her own.

OUTINGS

Outings at the weekends should be provided to those patients who wish to go out and are stuck on sections, many of whom are of no risk to self or others.   There is nothing to do at the weekends and I believe that these things would benefit the patients who would then have something to look forward to.

I wish that everyone could come along to the last of all fabulous summer camps run by http://www.working-to-recovery –  if anyone is going I look forward to meeting you and there are professionals, service users, carers all attending, some from abroad.  A different approach is needed throughout the UK – more therapy and more holistic care and emphasis on nutrition and proper assessments.

 

 

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.

 

 

 

 

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