https://bnf.nice.org.uk/drug/palperidone.html

Palperidone:  

For Schizophrenia, psychotic or manic symptoms of Schizoaffective disorder

Cautions:

Blood dyscrasias, cardiovascular disease, conditions predisposing to seizures, depression, diabetes (may raise blood glucose), epilepsy, history of jaundice, myasthenia gravis, Parkinson’s disease (may be exacerbated) (in adults); photosensitisation (may occur with higher dosages) prostatic hypertrophy (in adults) severe respiratory disease, susceptibility to angle-closure glaucoma.

Cautions – Further information

Cardiovascular Disease  –  An ECG may be required particularly if physical examination identifies cardiovascular risk factors, personal history of cardiovascular disease, or in cases where the patient is being admitted as an inpatient.

RARE   – SUDDEN DEATH – WITHDRAWAL SYNDROME NEONATAL

ELDERLY

For all anti-psychotics (other than quetiapine and clozapine) in patients with parkinsonism or Lewy Body Disease (risk of severe extrapyramidal symptoms)

increased risk of stroke

for use as a hypnotic, unless sleep disorder is due to psychosis or dementia – risk of confusion, hypotension, extrapyramidal side effects and falls.

for patients prone to falls (may cause gait dyspraxia, parkinsonism)

The above just some of the things listed.

Side Effects:

Agitation, amenorrhoea, arrhythmias, constipation, dizziness, drowsiness, dry mouth, QT interval prolongation, rash, seizure tremor vomiting, weight increased, movement disorders, insomnia

Agranulocytosis, embolis, Neuroleptic malignant syndrome  Sudden death withdrawal syndrome neonatal  Yes I have seen Elizabeth suffer Neuroleptic Malignant Syndrome on Clozapine.

appetite abnormal, asthenia, anxiety, cardiac conduction disorders, cough, depression diarrhoea, fever, gastrointestinal discomfort, headache, hyperglycaemia, hypertension, increased risk of infection, joint disorders, laryngeal pain, mood altered, nasal congestion, nausea, oral disorders, pain, skin reactions, vision disorders., sexual dysfunction, vertigo, oedema, muscle weakness, palpitations……etc etc

PREGNANCY –  Extrapyramidal effects and withdrawal syndrome, agitation, hypertonia, tremor, drowsiness, feeding problems and respiratory distress

FOR PALIPERIDONE  USE ONLY IF POTENTIAL BENEFIT OUTWEIGHTS RISK  =  toxicity in animal studies.   YES THERE ARE SUBSTANTIAL RISKS AND THE DRUG IS BEING PRESCRIBED AGAINST COTRAINDICATIONS

Manufacturer advises to consider long acting nature of formulation – Palperidone is detected in plasma up to 18 months after a single dose.

CHILDREN  – regular clinical monitoring of endocrine function should be considered when children are taking an antipsychotic drug known to increase prolactin levels.  This includes measuring weight and height, assessing sexual maturation and monitoring menstrual function.

Risk of relapse if medication stopped after 1 – 2 years.  Withdrawal should always be gradual and closely monitored to avoid risk of acute withdrawal syndromes or rapid relapse.  Patients should be monitored for 2 years after withdrawal of antipsychotic medication for signs and symptoms of relapse.

  • Dr Neil Sarkar is RC on Ruby Ward
  • Dr Helen Moorey is RC on Suffolk Ward Chase Farm Hospital

The “care” is being provided by local area ENFIELD at a cost of circa £450 a day to stay on a NHS ward  (or it may well be more as this is a PICU ward) or £900 a day on a private ward.   The care is not to assess Elizabeth’s underlying physical health conditions but purely put her on a power dangerous depot injection and try to justify themselves for doing that.   I had begged that she be sent to a brain trauma injury ward for assessment but ENFIELD MENTAL HEALTH have chosen to ignore the physical health of my daughter.   How many more I wonder have been affected in this way?   So they use facilities like Ruby Ward but they are the ones dictating behind the scenes as to the care as this is being provided by ENFIELD.

“Dear Ms Bevis,

Thank you for your e-mail.

I have read it carefully and appreciate you sending us information which you believe will help in your daughter’s care.

I cannot fully comment on all the points you raised, but will certainly investigate as much as possible. I will try to obtain some of these reports, especially the opinion from the National Psychosis Unit.  I have all their files of shocking content.

The Opinion of “Treatment Resistance” identified by Royal Bethlem has been dropped by ENFIELD despite the P450 liver enzyme test results.   The Opinion on diagnosis by several other doctors differs but I feel the correct opinion is Complex PTSD by Dr Bob Johnson and Selyes Generalised Adaptational Syndrome which has been completely ignored.   She has gone back to being a young teenager. Elizabeth was severely abused under Moti Villa scheme in the community going back to 2010.  She has a Learning Disability;  she has a brain injury noted by Dr Diane Caine in 2009 which has been ignored.  You cannot treat a brain injury with antipsychotic drugs.  Metformine was prescribed off label at Royal Bethlem – only an Endocrinologist should prescribe this off label.   Tachycardia was contracted on titration of Clozapine. 

  1. We do not have Elizabeth’s consent to discuss her case with you and we are not allowed to share information about her with you. However, we can receive information from you. Elizabeth has given her consent so now you can discuss and share.   

Elizabeth is likely to only be under our care on Ruby Ward Women’s PICU for a short period of time until any aggression and risk has been reduced. This is on average 2 weeks, but can be even less.  Noted.   However just look at the side effects of this drug agitation is noted as a side effect and skin irritation SO A DRUG LIKE THIS CAN ACTUALLY CAUSE AGITATION – HOW DOES THIS WORK THEN???

However I thought her time spent with you was to assess her properly.   She needs to be assessed by a Endocrinologist;  Neurologist.    

 When I spoke to my daughter on the ward phone yesterday she sounded very distressed about these injections.  She was complaining of chest pains yesterday.

Please confirm and also why you have not referred her to the Psychodynamic Psychotherapist for assessment.

https://www.psychologytoday.com/gb/blog/advancing-psychiatry/201904/chronic-schizophrenia-put-remission-without-medication

Overall responsibility for her care will be under ENFIELD mental health services thereafter and we need to work in close conjunction with them throughout.   How interesting – they have chosen to ignore “Anterior Region Medial Temporal Comprise back in a 2009 report.

Regardless of Enfield, you have duty of care for my daughter and better resources at your hospital than Enfield.                        

Enfield have neglected her physical health leading to her going downhill time and time again.   It was suggested at a previous tribunal that full hormone checks be done..   Neither referral to Endocrinologist or for MRI scan has been made.

Physical health should be paramount.  I am referring this fact to my local MP and The Rt Hon Kier Starmar.  My  daughter has suffered injury because her physical health is being ignored.

We therefore would not be making any major changes to her overall care, but just trying to stabilise her in the short term and then referring her back to Enfield services. I am very disappointed to hear this because you have something good on your site ie psychodynamic psychotherapy.   It would seem…

  1. I will pass on your e-mails with Enfield services, so they are also aware of your concerns and opinion, as your daughter’s long term care will be with them.   Then perhaps Elizabeth will only be treated fairly and not neglected in terms of her physical health if she moves away from Enfield.

I hope you can understand our position. I do not understand how any Doctor can ignore underlying physical health conditions documented in reports no matter what because every Doctor should have a duty of care.  The matter of mental health being on par with physical health therefore needs to be addressed.

The other reason I object to depot injections is the fact that Elizabeth is “treatment resistant” and a poor/non metaboliser. 

Prolongation of the QT Interval can cause heart arrhythmia to someone who has low blood potassium and at risk of a heart attack.

So what level of Potassium is the result? 

Potassium levels below 3,0 mmol/l cause significant Q-T interval prolongation with subsequent risk of torsade des pointes, ventricular fibrillation and sudden cardiac death.   
Elizabeth has had all the tests done years ago through  Peter Bennett of Rehealth which reveal “low”

 

What are the magnesium levels also and the prolactin levels?   –  magnesium also recorded as “low”

My daughter should not be having this drug because it is contra indicated and i am particularly concerned about the prolongation of the QT Interval. Throughout the files Elizabeth is recorded as having an irregular heart arrhythmia.  Also who exactly is responsible for the very specialised administration of this expensive  drug.  Risperidone was previously found to be allergic to but this has been ignored by ENFIELD? so Palperidone – metabolite highly dangerous to someone low in Potassium – prolonged QT interval – risk of heart attack.   WHY IS THIS DRUG BEING PRESCRIBED ENFIELD especially in light of the following contraindications noted in bold.

 

Who should not take Paliperidone Palmitate Syringe?

The following conditions are contraindicated with this drug. Check with your physician if you have any of the following:   Yes Elizabeth does have as highlighted in yellow.

Conditions:

  • breast cancer
  • diabetes  – not sure – has PCOS and is insulin resistant – private Endocrinology tests 
  • a high prolactin level
  • excessive fat in the blood
  • low amount of magnesium in the blood
  • dehydration
  • low amount of potassium in the blood
  • overweight
  • very low levels of granulocytes
  • a type of white blood cell
  • low levels of white blood cells
  • low levels of a type of white blood cell called neutrophils
  • confusion
  • suicidal thoughts
  • a type of movement disorder called parkinsonism
  • tardive dyskinesia
  • a disorder characterized by involuntary movements of the face
  • mouth and tongue   – seen that on Clozapine
  • neuroleptic malignant syndrome
  • a reaction characterized by fever
  • muscle rigidity and confusion
  • a low seizure threshold
  • a heart attack
  • angina
  • a type of chest pain
  • torsades de pointes
  • a type of abnormal heart rhythm  –  (has suffered palpitations and tachycardia recorded in files of the Bethlem and Mews Score 3 critical)
  • chronic heart failure
  • abnormal EKG with QT changes from birth  Not sure – were complications at birth
  • a disorder of the blood vessels of the brain
  • orthostatic hypotension
  • a form of low blood pressure
  • compression of the esophagus
  • priapism
  • a prolonged erection of the penis
  • seizures
  • weight gain
  • susceptible to breathing fluid into lungs
  • pregnancy
  • decreased blood volume
  • problems with food passing through the esophagus
  • metabolic syndrome x
  • dementia in an elderly person   I have had extensive private tests done  genetic tests done that point to interesting results
  • diffuse Lewy body disease
  • cataract surgery  Has complained of pain to eyes and index finger/joint pains like Arthrytis
  • floppy iris during eye surgery
  • abnormal muscle movements  –  yes on Clozapine
  • chronic kidney disease stage 2 (mild)
  • chronic kidney disease stage 3A (moderate) –  thought I had seen this in the files 
  • chronic kidney disease stage 3B (moderate)
  • chronic kidney disease stage 4 (severe)

Allergies:  Used to have chronic asthma as a child

  • Risperidone Analogues

I look forward to hearing from you about my main concerns on contraindications because of Xeplion (Palperidone).

ACCOUNTABILITY
Before Elizabeth was suffering from chronic pain and had come off a powerful drug (Risperidone) 2mg  previously found to be allergic to that brought her out in a rash.   She was under the “care” of Dr Helen Moorey whilst this drug was being re-prescribed. However it wasn’t only Dr Moorey but other doctors in the community team under ENFIELD COMMUNITY REHAB and at Huntercombe that chose to ignore file correspondence stating that Elizabeth was previously found to allergic to that drug.   Huntercombe Roehampton prescribed enormous quantities of Risperidone and Clonazepam then diagnosed her as having Aspergers.
In the case of Paula McGowan’s son Oliver, a Doctor chose to ignore advice from the family that the drug Oliver was prescribed he had previously found to be allergic to.  So the reason that I am making this public is that under the mental health and learning disability many vulnerable people’s lives are being lost by Doctors who choose to ignore physical health and prescribe dangerous drugs knowing that these drugs are not going to cure them but in fact can lead to death and then try to defend their actions through “confidentiality” and backing one another’s actions.   There does not seem to be any accountability and there should be when it comes to prescribing.  At a recent Tribunal it was suggested that full hormone tests be done and that should have involved an appointment with an Endocrinologist. Nothing has been done.  A faulty Endocrine system can mean the entire pituitary glands could be affected but a psychiatrist does not bother to refer a patient to see an Endocrinologist or specialist in the field of physical healthcare as they are after a quick solution that does MORE HARM THAN GOOD.       A Doctor’s decision is rarely ever doubted or questioned but many mistakes can be made in prescribing when they choose to ignore underlying physical health conditions.  When death occurs and they say it is “natural causes” it is terrible that parents have to go through the traumatic experience of having to fight for justice whilst full representation in court goes to the professionals, the LA and Trust and something should be done about this awful situation.
Communication is the key and when a vulnerable person like Elizabeth has difficulty in communicating this can lead to dismissal and misinterpretation by professionals.  This is why it is important that the sooner the better, mandatory training is put in place for professionals involved in care for  people with LD and Aspergers like Elizabeth (who has been deprived a proper assessment by independent experts under ENFIELD).  I would like to draw people’s attention into how those vulnerable people are being injured and dismissed like rubbish by Doctors who choose to ignore drug contraindications, past medical history as well as physical health concerns and most importantly choose to play on confidentiality.
Elizabeth’s physical health has been completely ignored and damaged by the local area of ENFIELD.  It is stated throughout the files she has Aspergers/LD and complex PTSD.
I’ve lost count the number of times I have seen Doctors smiling smugly as they appear to be above the law.   The only I have seen the smile disappear off a Doctor’s face was when I told them that I had got into the Police.   It is the Police who have dealt with my daughter in the community when she has phoned distressed.  I cannot praise more highly the Police and the Ambulance services.
As for the Community MH Team, the GP they have failed to provide care in the community.  There might be Covid 19 but if a vulnerable person wanted an MRI scan they have responded by stating everything is at a standstill which is NOT TRUE.  It all comes down to money – the GP surgery arguing with the CCG that it wasn’t them who refused the funding and in the end it all became too much for Elizabeth who became very upset.  I was looking into providing that scan myself like I provided the Endocrinology tests.
Physical health should be paramount before mental health labels but this is not happening in the UK.  It is heartbreaking to watch someone decline because of Doctors neglect and iand the fact they dismiss anything to do with underlying physical health conditions and arrogance – the way they stick together with a diagnosis that is disputed by other doctors throughout the files and this is what is happening under my local area.   The amount of money that has been spent on court action and priority on getting rid of myself as nearest relative is enormous together with the bullying I have had like never before by social services under ENFIELD COMMUNITY REHAB TEAM.   The pack of lies written in records putting blame on home and family –  I’ll give you an example –  back in 2010 at Moti Villa scheme in the community something bad happened to Elizabeth –  I was working full time and on the Police training course at the weekend.  It is recorded by a social worker that her frequent admissions were due to my constant visits “to escape her mother” –  I was taken to RcJ for displacement of NR where the LA wanted to step in and take control.  When I saw who that person was representing the LA as NR I decided to represent myself in court.   They tried to dismiss Elizabeth like she was non-existent.  I was not given court details properly and whilst I arrived in court I was guided by the receptionist to the wrong court.   They temporarily succeeded in displacing me but on the second occasion I was there and had prepared court papers for myself and the judge wanted to meet Elizabeth.  I then was forced to delegate my role short term to Elizabeth’s sister who was approached and told “your mother is going to lose in court and get enormous costs”  Elizabeth had also been told the same “go for your sister as NR” .  I delegated my role as NR because I was threatened by ENFIELD COUNCIL for costs of £5000 in a consent order.   They never went back to court so I found out then I discovered that the underlying S3 was due to expire so I simply took back my role as NR and challenged the S3.
All the time Elizabeth has been let down by the care and was discharged from hospital to a flat that was barely up and running.   There were just carpets, nowhere to sit, no bed assembled, no cooker, no furniture.   That was in July 2019.  It was towards the end of 2019 that Elizabeth was starting to go downhill and then followed a hospital admission.  So between 2019 to date no MRI scan or Endocrinology tests carried out so physical health is ignored under ENFIELD and I believe this is all down to money.  In the community there is no proper help for someone living in their own independent flat who needs a support worker.   For the first time Elizabeth has nice accommodation.
When someone has been made disabled like Elizabeth and is living in the community in her own flat then some support should have been provided.  That support should have been:
A specially trained support worker for someone who is autistic or as I believe brain injured.   This is why I turned to Headway who said it was the wrong kind of brain injury.  The only brain injury they recognise is from car accident or from birth yet it clearly states “Anterior Region Medial temporal compromise”  in 2009.
Whilst it is terrible what is going on right now with Covid 19 and lives being lost under the NHS many lives are being lost and destroyed because of Doctors who choose to ignore underlying physical health concerns in favour of mental “illness” and instead of providing  therapy they provide mind altering drugs to mask the symptoms of injury that could otherwise be dealt with in the case of trauma by psychotherapy and by referral to experts specialising in endocrinal disorders and neurologists / mri scans.
It is no wonder Elizabeth has suffered injury and this has a knock-on effect as other family members can suffer from serious health problems such as heart attack and stroke thanks to the neglect of some doctors.
Today, despite being classed as “extremely vulnerable”  I will be going to St Pancreas Hospital to bring Elizabeth some things she has asked for.  No visitors are allowed not even a solicitor is able to visit because of strict controls re Covid 19 and Tribunals /meetings on video link.
Elizabeth has made a friend on the ward and I am going out shopping first to buy some nice things.
I have met the support worker who seemed very nice when I last dropped some things in for Elizabeth and I was dealt with nicely on the telephone but I cannot praise what they are doing right now with the drug Paliperidone especially when they have a Psychodynamic Psychotherapy department on site and this is the kind of treatment that worked for Elizabeth without any drugs whatsoever back in 2016 when I provided private care.  There is no justification in ignoring BNF contraindications whatsoever.

There seems to be a problem with Elizabeth’s phone.  She phoned me tonight on the office phone from Ruby Ward.  Sounded disorientated.  On such a lovely day it is so hard to think of my daughter and others cooped up on wards such as this and it has been some time now since Elizabeth has had fresh air.   If she was here now I would take her for a drive to the coast but feel in total despair particularly when I finally heard from her tonight talking about an injection.   I decided to phone the ward and it sounded like Haloperidal.   Either she had had an injection or was about to.   I’m glad I did phone the ward as I heard the plan was to put her on depot injections tomorrow apparently.  Elizabeth’s condition is complex PTSD.   Under NICE Guidelines the following is stated:

Drug treatments for adults

  • Drug treatments for PTSD should NOT be used as a routine first-line treatment for adults (in general use or by specialist mental health professionals) in preference to a trauma-focused psychological therapy.

Elizabeth has been crying out for therapy not drugs and was trying to arrange this herself in the absence of any care whatsoever provided by the local area of ENFIELD.   I cant believe that Ruby Ward is considering this especially when they know that Elizabeth is “treatment resistant” and cannot metabolise the drugs.

She has twice now been put in the community without any care in place.

She has been let down by the PRIMARY CARE in ENFIELD.

I am going to write to Dr Sarkar who is the Responsible Clinician to voice my concerns tonight.   I have seen better things on offer at this hospital than in Enfield for instance Psychodynamic Psychotherapy.

Up until now I do not think that Elizabeth has had any therapy and has been drugged up on Clonazepam to the point that you could hardly hear what she was saying,as she was talking in a slurred manner.

My concerns are that under Secondary care due consideration is not being given to a patient’s physical health and I would like something done about this.  Elizabeth needs a thorough check on her physical health and it is negligent of any Doctors to ignore this.  I have already proven there are physical health problems.

Before any thought of depot injections is given Elizabeth’s physical health concerns need to be addressed by Doctors who specialise in the field of Neurology and Endocrinology as Elizabeth has a full report by Dr Bob Johnson stating Complex PTSD –  Dr Mukherjee from Enfield had to agree to this following the Wonderful care I provided for Elizabeth in 2016 when she came back from Australia well.   So it is not drug treatment that is the right thing for someone with complex PTSD and I have seen that at St Pancreas Hospital they have the right treatment on site.  Never before has Elizabeth had EMDR but Dr R D Laing’s friend and former colleague wrote to me: Psychiatrists are usually just physicians and not trained psychoanalytically.  Denis Berke and R D Laing were psychoanalysts.  It might take longer to treat someone with psychoanalytical psychotherapy and without drugs but it is successful.  It is up to a psychoanalytical psychotherapist to assess someone as suitable for that NOT A PSYCHIATRIST.”  “I was once asked at Kings College Hospital London what drugs I used when treating patients with psychosis.  When I said that as a psychoanalyst I did not use drugs they were shocked.  I was shocked that they were shocked”.

Today was a meeting at the hospital which in the end I was included but what I find happens is that Doctors try to say that the patient does not want to share information.  On so many occasions Doctors hide behind “confidentiality” only this time there were witnesses to the contrary.   If only there was a better system over here like in Norway and Finland with Open Dialogue.   I’m writing about this at the moment in my book.  Transparency, openness and honesty are the key and inclusion rather than exclusion.

Elizabeth has been totally damaged by her treatment under the mental health and right now it is worrying as no visitors are allowed on the ward and meetings are on line.

I am going to write now to Dr Sarkar as it is therapy not drugs that is needed and referrals to an Endocrinologist and Neurologist.  You cannot treat someone with a physical health condition with psychiatric drugs of any description and therefore these physical tests need to be done first as primary care comes first or should do and this is certainly not the case in Enfield.

Finally the GP surgery locally had been stating that all non emergency appointments had been put on hold but when something is bothering someone so much like Elizabeth who was suffering from chronic pain this should be another matter.  No it is not true that no scans were taking place because I enquired and these could have been done.

The other thing is Elizabeth has constantly complained that no one understands her and I cannot wait until the mandatory training is put in place.  How many like Elizabeth are lumped together with MH and there is a language barrier.  This training can’t be soon enough as far as I am concerned.

https://www.learningdisabilitytoday.co.uk/prevent-avoidable-deaths-by-making-autism-and-learning-disability-training-mandatory

Due to the Cornavirus crisis Elizabeth was discharged from Section 3 by Chase Farm Hospital Enfield.  She had ended up on section 3 through no  care provision in the community since July 2019.  She withdrew “cold turkey” from “medication” that was giving her terrible side effects and , as  seen before, too steep a withdrawal led to withdrawal syndrome.

I was initially going round  to help her within her in the flat with cooking etc and taking her out for drives plus assisting with shopping.  I took her to an emergency chiropody appointment but, once again, no support locally.

With nothing to do in the community what with social distancing/isolation Elizabeth was back in the same situation as she was previously.

Now she is in a worse position.  I could see her going downhill because of the steep withdrawal. With no doctors wishing to help in terms of slow, gradual withdrawals  for convenience sake vulnerable people like Elizabeth are kept on these drugs long term.  This is done with disregard to Manufacturer’s instructions of up to 6 weeks and has resulted in injury to physical health.

I have been challenging the diagnosis for many years now as there are so many different diagnoses in the files and would dispute Schizophrenia.  The term “treatment resistant”  (poor/non metaboliser) has been dropped since the Bethlem (Bedlam) where Elizabeth was prescribed 2 x bnf levels of drugs.

It has been like a brick in the wall trying to tell certain Doctors that there are underlying physical health conditions clearly recorded in the files as follows:

Anterior Region Medial Temporal Compromise –  2009  is a brain injury.  This is in a report from UCL.

Headway stated this  was the “wrong kind” of brain injury but what it boils down to is funding.  Their funding is through North Central London CCG and they provide brain injury/trauma services for Enfield so I told them a brain injury is a brain injury and NOT a psychiatric illness and was discovered way back.    I astonished that I as just a mother have to point out these facts to professionals.

Having come off the drugs cold turkey, Elizabeth was suffering from chronic pain, no doubt as a result of having been on these drugs for so many years. She did not feel at all well and being isolated without care and support she started to phone Police again who she regarded as “friends” then Ambulances were called and Elizabeth did not want or need an ambulance.  Eventually the care coordinator started to visit her home but just visiting was not enough  as there was no structure in care. If Elizabeth was in a place like Camphill Community Trust that offered activities then she would not be back to square one.  Elizabeth would be better placed in one of the Camphill Community Trust’s projects or a care farm and this would be a much nicer environment than a PICU ward and could benefit all the patients as Elizabeth loves animals.   There would be no need to drug her if she was in the right environment.  Whilst the flat is the best accommodation she has ever had without any support whatsoever this is not good.   The accommodation provided under supported living and housing in Enfield has been awful.

I spoke to Elizabeth today currently on Ruby Ward, St Pancreas Hospital.  She has got her phone back after being it without for about a week whilst held in seclusion from around 12 May to 16 May in a Section 136 suite at Chase Farm Hospital which is dreadful.  I sat in the foyer of Chase Farm waiting for news but was not allowed any contact then after she had been moved without the chance of even saying goodbye,  the phone was left behind in the safe on Dorset Ward so I had to travel all the way up to St Pancreas Hospital.  The nearest station was closed and so I had to get a bus part of the way.   I was not allowed to enter the building neither  I am not allowed to visit Elizabeth so I just left a bag of food and clothing and handed her phone to the support worker. Elizabeth has not been tested for Covid 19 yet as normally patients are kept in isolation whilst results are sent back between 24 – 48 hrs.

At least we can get through to her on the phone now but from the phone call I received today, Elizabeth  does not sound too good and sounded very drugged up and her voice was slurred.  She is apparently on Clonazepam again.

One reassuring thing is that a former patient has said good things about this hospital that there is far more going on than locally and I think I have heard good reports about the RC Dr Sarkar from a friend but I will check later to make sure this is the same Dr Sarkar. I was told he reads all his emails which is a good thing as I have sent lots of attachments including the P450 liver enzyme test results of NON METABOLISER.

I will probably go and visit later on in the week with some more things  but I am concerned that she should not be on the clonazepam for too long and that she needs to be referred to the Psychodynamic Psychotherapy Department that I spotted on my way out of hospital premises.

Dr R D Laing’s friend/former colleague told me: “I was once asked at Kings College London what drugs I used when treating patients with psychosis.  When I said that as a psychoanalyst I did not use drugs they were shocked.  I was shocked that they were shocked”.    I have sent these important comments on to Dr Sarkar.  Now I have spotted the kind of care onsite,  I hope that Elizabeth will be given the opportunity of a visit from a psychodynamic psychotherapist.     I have informed Dr Sarkar that Psychotherapy helped Elizabeth enormously in Scotland and Australia.   Therefore she needs to be on next to nothing of drugs and on the day of such visit, must not be given y Clonazepam at all.

I have also told Dr Sarkar that in light of Anterior Region Medial Temporal Compromise an  MRI Scan needs to be done.  Unfortunately Carlton House Surgery wrongly said  no scans were taking place right now so I have seen this in their text message.   Well I have looked into this – that is not true at all, as I was looking to pay for the scan.   With a brain injury how can this be treated with any anti-psychotic drugs and I do not wish for Elizabeth to suffer further injury when I have proven that in Australia and Scotland psychotherapy worked and EMDR should also be tried.  It seems to be that funding is the big issue but in my opinion enormous money has been wasted by provision of wrong care and treatment  so now I would like to see the right care and treatment provided, as if this was provided in the first place Elizabeth would not be in the current situation.

What is letting so many  vulnerable people down is total lack of care and support in the community which leads to them ending up back on the acute wards which could not be a worse place for them in my opinion as drugs given which are NO CURE.

The answer is to send such patients to nice quiet peaceful natural environments in the countryside and there needs to be more centres like Camphill Community Trust or Care Farms.  These are the right environments for Elizabeth to get well and I have proven this already  @Rightful Lives “My Wonderful Care” by Elizabeth.

Message for the RC  Dr Sarkar and Team: 

  • Elizabeth needs an MRI scan and special emphasis on the pituitary glands and candida/parasites
  • An Endocrinology examination follow up by a specialist which I will detail in my next email.
  • Referral to the Professor – an expert on PTSD in Lincoln.
  • A referral to Brain Injury Specialists and provision of the specialised trained support workers needed in the community
  • A referral to the Psychodynamic Psychotherapist on site and to try EMDR
  • I would point out that Hypnotherapy was more effective than the drugs and if any medication should be given it should be natural medication –  If Elizabeth is suffering from chronic pain then she needs to be referred to this clinic in Manchester.   I can take her there myself.

Britain’s first medicinal cannabis clinic opens in Greater …

https://http://www.theguardian.com/society/2019/mar/09/britains-first…

09/03/2019 · Britain’s first medicinal cannabis clinic opens in Greater Manchester A new private clinic in Greater Manchester has become the UK’s first specialist medicinal cannabis centre.

Instead of all the antispychotics previously prescribed stated as having “NO EFFECT”  medical cannabis is well worth a try.  This coupled with the Endocrinology and MRI tests and Psychodynamic therapy will be the cure of Elizabeth.   It might be a good thing to offer hypnotherapy as this treatment was most effective.

What is needed is to look at individual cases.  There might be some patients who may benefit from drug treatment and are happy to take it but when someone gains no effect from these drugs and are treatment resistant then other alternatives need to be found.

Also Physical health should be of prime importance.

Most of all we need the facility like Chy-Sawel where safe drug withdrawals in the UK can take place.  None exist in the UK so we need more therapeutic communities offering the facility and assistance for vulnerable patients who are not getting on well with the drugs to withdraw from them safely and proper assessments on physical health prior to mental health diagnosis.

PHYSICAL HEALTH MUST COME BEFORE MENTAL HEALTH LABELS AND PROPER ASSESSMENTS NEED TO BE DONE PLUS THE p450 LIVER ENZYME TEST THROUGH LIVERPOOL UNIVERSITY.

 

 

 

Ive been at Chase Farm Hospital Enfield most of the day waiting for news as none of us in the family can get through to Elizabeth who is without her phone and held in seclusion in the 136 ward whilst on Section 2.

Elizabeth was upset when she called into the GP surgery.  There has been dispute between the GP Surgery (Carlton House) and Enfield CCG about funding for an MRI scan. Elizabeth has been complaining of chronic pain not surprisingly when you have been put on massive dosage of drugs and 2 x bnf levels for instance at the Royal Bethlem Hospital as documented in the files.

Not only should an MRI scan be done but also Endocrinology and ECG and this is the responsibility of the GP but when someone is autistic defined as LD such vulnerable patients get ignored and this is what has happened so I had to get involved.  Same old story about confidentiality and I have POA too but no one would speak to me but I did get to hear that it was not the GP surgery but Enfield CCG who had refused the funding. Then Enfield CCG said it was not them but the GP Surgery so I have had to write to everyone about this important matter as the correct ward is a brain injury ward in order that all the correct assessments can be made and at the same time checks on the endocrine disorder that I have proven.

So I found out she was put on a mixed ward which was a big mistake and I said so but no one listened then left on the Section 136 ward in seclusion so today I have been up with some clothes and a phone charger and some food but none of us have been able to speak to Elizabeth to see how she is.

The little ward for brain injury trauma would have been the correct ward at Edgware for her to be assessed but now I have heard ENFIELD MH are looking for a PICU bed and this is not good.  Could be far away and I am not well and now I will have to travel a long distance.

No visitors are allowed on the ward and I did not see staff dressed in PPE yet the procedure should be that someone is tested for Covid 19 and put in isolation for between 24 – 48 hours which is fair enough but what if that person has got Covid 19 and none of the staff are wearing any protective clothing.  They might have a flimsy mask or gloves but not PPE.  I am extremely worried as they want to send her a long distance away.  The furthest she has been sent is Wales to Cambian and none of these private institutions have offered the right kind of care.  At Huntercombe she was so drugged up she could barely stand or see.  She spent most of the time asleep which I suppose is convenient to the staff.   She was prescribed massive dosage of drugs they knew full well she was allergic to so it is no wonder why people die in these places so today I wrote the following email to the following:

———- Original Message ———-
From: Susan Bevis
To: enquiries@braininjurygroup.co.uk, matt.hancock.mp@parliament.uk, boris.johnson.mp@parliament.uk, Jeremy Corbyn <corbynj@parliament.uk>, HSCCOM@parliament.uk, rosena.allinkhan.mp@parliament.uk, feryal.clark.mp@parliament.uk, NPL.Consulting.Ltd@gmail.com, carltonhouse@nhs.com, enfccg.communications@nhs.net, enfccg.patientenquiries@nhs.net, “KANDOLA, Jinjer (BARNET, ENFIELD AND HARINGEY MENTAL HEALTH NHS TRUST)” <jinjer.kandola1@nhs.net>, nora.brennan@headwayeastlondon.org, concerns <concerns@cqc.org.uk>
Date: 14 May 2020 at 22:27
Subject: DEPRIVATION OF LIBERTY CHASE FARM HOSPITAL ENFIELD – ELIZABETH BEVIS

My daughter is stuck on a section 136 ward since 12 May 3.00 pm in seclusion not allowed a telephone and not allowed to go out for any exercise.   None of us in the family can contact or speak to her to see if she is OK.

It seems like money is being put before the wellbeing of the most vulnerable people like my daughter in the UK when she has been refused an MRI scan and should have been checked with ECG and endocrinology and nothing has been done under Enfield.

 

Anterior Region Medial Temporol Compromise is NOT  a mental illness it is a brain injury and I want my daughter placed on the correct ward – (nearest I believe is Edgware) so that she can have all the correct assessments done on her brain injury and whilst she is on a Section 2, thorough assessments should be done on her PHYSICAL HEALTH including Endocrine System.    She has physical health problems that cannot be cured with antipsychotic drugs and is a poor/non metaboliser of the drugs so they do not work in any case.

I do not want to see her injury deteriorate further and would therefore like everything addressed in Parliament as to the Mental Health Act which is not fit for purpose and failing to protect vulnerable people like my daughtrer.  Physical health must come first after all it is stated in the DSM.

In Norway they have got it right thanks to Professor Goetszche – no forced drugging of mental health patients.  There needs to be better facilities – noisy/volatile wards are not the right place for my daughter to be sent to.  There has been no care in the community because so much money is being wasted on private sector institutions such as Cygnet and Huntercombe even the RCs there agreed that this was the wrong environment and is costing the public £14000 per week when this should be spent on community care and improving the care under the NHS.

I am not supposed to be going out because I am regarded as being extremely vulnerable but have no choice as I might have to travel to visit the hospital wherever my daughter is sent even if it is hundreds of miles away-  there are no decent facilities in the UK so at least please look into providing the right facilities to investigate the brain injury.

It is a really bad to put someone with LD/autism/PTSD and brain injury onto an acute or picu mental health institution and keep her like a punishment held in the Section 136 ward all this time.  Then I heard she is being sent to a PICU ward and I am most upset about this. PICU wards have not helped in the past and has been a complete and utter waste of public money.

I would like something done urgently before my daughter is moved God knows where because this is affecting my health severely and I have had a stroke because of having to fight for the right kind of care in this country that should be treating people in a humane manner but this is not happening.  She has been sent as far as Wales by the Royal Bethlem Hospital in the past.

I totally disagree with the email from Headway (Nora Brennan)  –  a brain injury such as detailed in a report going back to 2009 should NOT be dismissed and should be properly assessed not ignored. I feel my daughter is being discriminated against under the Equality Act as she has a brain injury.   If the brain injury was discovered as far back as 2009 then why has my daughter been experimented on and given 2 x bnf levels of drugs at the Royal Bethlem Hospital National Psychosis Unit in 2012 where she contracted tachycardia on Clozapine?   Doctors should do no harm and you need to look into some of the doctors who are prescribing dangerous levels of drugs to vulnerable patients and killing them – take a look at the attached example of polypharmacy and shocking degrading research on clozapine.   There needs to be tighter guidelines on prescribing and accountability.  When the GP and CCG do not wish to provide the assessments on physical health I am having to turn to everyone as this needs to be sorted out as my daughter visited countless times to Carlton House Surgery Enfield to ask for help as she was suffering from chronic pain.  Also no way should she have been left in the community in a flat on her own without any support whatsoever.  What is needed is more support in the community for vulnerable people, direct payments helped keep my father with Alzheimers out of home for years and this was refused by Enfield Community Rehab.  Once again down to funding.

I look forward to hearing from you.

 

Kind regards

 

SUSAN A BEVIS –  Mother, Nearest relative and McKenzie Friend

 

 

 

Dear Susan,

As I said in an email last August, Headway East London is commissioned by Enfield CCG to deliver the Enfield Brain Injury Service.

Under our contractual obligations with Enfield CCG we are limited by very strict criteria. In order to accept a referral we need documented evidence of an aquired brain injury. This must include scan results, date of injury, mechanism of injury eg: road traffic accident, assault. This can be a discharge report from acute admission following an injury or a therapy discharge report.

 

 

 


From: Susan Bevis
Sent: 11 May 2020 11:48
To: Nora Brennan <nora.brennan@headwayeastlondon.org>; carltonhouse@nhs.com <carltonhouse@nhs.com>
Cc: feryal.clark.mp@parliament.uk <feryal.clark.mp@parliament.uk>;  NPL.Consulting.Ltd@gmail.com <NPL.Consulting.Ltd@gmail.com>
Subject: ANTERIOR REGION MEDIAL TEMPORAL COMPROMISE

Dear Ms Brennan

I refer to your email back in 13 June 2019 at 16:29 in which you stated“unfortunately Headway are unable to diagnose brain injury or influence any medical investigations.”You also went on to state “we are only able to accept referrals for those who have a confirmed diagnosis of brain injury and can provide evidence of this”.

I have had a chance to look extensively at the file records I have and check with Headway where I spoke to a former mental health nurse who confirmed to me that Anterior Region Medial Temporal Compromise is in fact a brain injury whereas my daughter has been treated for a mental health condition by maximum amounts of anti-psychotics 2 x bnf level when all along she had a brain injury.

I have had extensive Endocrinology tests done on my daughter Elizabeth Bevis to prove that she has PCOS and is insulin resistant.  With a faulty endocrine system and being treatment resistant to anti-psychotic drugs the entire pituitary glands could be blocked and in addition cyst was discovered in an MRI scan and I am trying to get up to date scans done.

My daughter also has Neurology reports stating mild tardive dyskinesia as she was making sharp arm movements when she was walking.

She now has chronic physical health condition and suffering joint paints and has balance problems and this as affected her eyesight too.

I do not like the way my daughter has been dismissed or the way her physical health for many years has been ignored by doctors in favour of a mental health diagnosis that none of us can accept.  I would appreciate your comments in this respect.

Attention of The Rt Hon Feryal Clark MP

Please can you help get the referral to brain injury specialists Headway along with the services of specially trained brain injury support workers in who can assist and communicate effectively with her to enable her to live independently within her own flat and wider community  None of this is being provided under mental health services who are not specialists in brain injury.    I think it needs to be recognised that there are many more people like my daughter under mental health services who need more specialist input and if hospital admissions are necessary, then this should be on a specialist ward for brain and trauma injury not an acute mental health ward where antipsychotics are given to suppress not cure the symptoms that are not of mental illness but of brain injury.  After all, how can you treat a brain injury with anti-psychotic drugs?

I also feel that under the mental health, physical health is largely unexplored or ignored and not assessed properly and I am just a mother but have had extensive tests done privately to prove that there are underlying physical health conditions in this case and the diagnosis therefore can not be Schizophrenia.

It should be addressed in Parliament that vulnerable people who sustain injury or in Elizabeth’s case had a pre-existing injury identified from the beginning should have access to proper assessments before a mental health prognosis is given.

To Whom It May Concern – Carlton House Surgery

Please refer Miss Elizabeth Bevis  to Headway brain injury specialists as, it is clearly mentioned in files going back to 2009 in the report by Dr Diana Caine UCL that she has Anterior Region Medial Temporal Compromise.  In addition please refer her to an open scanner for MRI and to a Reproductive Endocrinologist specialist as recommended by Professor Hooper for the necessary check up on the PCOS already identified which should be done on an annual basis.  Also she will need ECG tests due to tachycardia sustained through the titration of clozapine – the irregular heart beat should be monitored regularly.   The Neurologist, Dr Kennedy also mentioned tests for Wilsons Disease but these were not done and should also include Ehlers Danloss Syndrome due to balance problems.  Everything should be explored as after all, it is stated in the DSM that a mental health diagnosis should NOT come before any physical health condition or in cases of drug induced/withdrawal psychosis as was the case due to Prozac withdrawal cold turkey which was prescribed by Carlton House Surgery in the first instance.

Att:  Sir Norman Lamb

As Chair of South London and Maudsley Foundation Trust I would comment on the fact that there needs to be much improvement at the National Psychosis Unit who prescribe drugs at 2 x BNF levels and did not carry out the drug free period of assessment recommended correctly and then sent Elizabeth to Wales where attempts were made to displace me as Nearest Relative and isolate Elizabeth from her family.   This is supposed to be a world renowned hospital but I am afraid I have not got a good word to say and have all the files on this hospital that I would rate rock bottom.  No contra indicated drugs should be given to treatment resistant patients like Elizabeth as I have proven that she cannot metabolise the drugs and what should have been done is extensive endocrinology tests which I paid for myself which revealed underlying physical health conditions.

Yours sincerely

Susan Bevis

 

What lengths do you have to go to in order to highlight what is wrong under the NHS in this Country.    I could not see that staff were being protected and patients and as I sat there in the foyer nearly all day long requesting that Elizabeth be sent to a ward where they can investigate the brain injury and refer to other specialists only to hear she is being sent to a PICU ward which has already in the past been a complete waste of money and these wards isolate patients and they are put on high levels of drugs such as Huntercombe Roehampton –  Every single drug has been tired on Elizabeth and Clozapine was one of the worse.  To this email I attached an example of meds prescribed at Cygnet and horrific research on Clozapine that caused tachycardia and also the P450 liver enzyme tests that showed NON METABOLISER.  Now that I have seen and studied the files going back to 2009 I want to know why Elizabeth’s physical health has been ignored and in addition why is everyone’s physical health being ignored under the mental health system especially when it is proven there are underlying physical health problems that the GP should have investigated.

ON two occasions now Elizabeth has been discharged from hospital to her flat where she lives independently but she had NO SUPPORT under ENFIELD.  This is an area that have spent a fortune on legal action against me and now in despair I have had to contact everyone as when a vulnerable person goes time and time again to the GP and is calling ambulance and police out this person needs to have their PHYSICAL HEALTH investigated especially when they are complaining of chronic pain.

I would also like to see accountability in terms of prescribing because such drugs cause injury.

I feel Elizabeth has been discriminated against – to be told by a brain injury specialist that this is not the right kind of brain injury is not satisfactory.  A brain injury is a brain injury and I have checked the condition Anterior Region Medial Temporal Compromise.

The care coordinator has sent me the following but I have responded with:

.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2927029/

https://pubmed.ncbi.nlm.nih.gov/9276847/

“I am sceptical about the brain study for a number of reasons.  The cohort is not, as the article suggests matched to the control by the very presence of neuroleptics.  In my school we would consider that a major confounder similar to the ADHD study done some years ago.  Neuroleptics significantly alter brain function and the study has not properly accounted for that as a factor in the MRI results.

Brain scans are notoriously inaccurate in determining mental functionality.  I was involved in a study like this some years ago where there was all an indication of ‘abnormal’ pre-frontal activity.  It was totally inconclusive and a number of us considered the study itself unethical.  

One of my students has just done a research project on how SSRI’s prescribed long term affect brain architecture.  Long term use of neuroleptics alters brain function significantly.  In short it would have been extremely unusual if the MRI scans of the cohort and the control matched.  The age range of the patients (18-65) is far too broad and is again a major confounder in considering brain function.  Some of those patients will have been on neuroleptics for decades including hideous drugs like Largactyl and Stelazine.  Extrapyramidal side effects in that group would be highly pronounced and not in the control.  Matching the images is therefore useless.   

The study talks of impaired cognition in the patients in the cohort.  The neuroleptics given over such a period would cause that just as acutely as any suggested lesion.  Once again this means the control is not matched.

The Harrow study has carried out a proper comparison of cognitive function between patients with psychoses continually medicated and a properly matched control of those who had psychotic episodes but were not medicated.  The cognitive function in the non medicated group was higher than that of long term medicated.  

My overall assessment is the study is flawed in the absence of a proper evaluation of the confounders.

I, by the way do not consider the ‘diagnosis’ of schizophrenia to have any scientific merit at all and no longer classify patients with this label.  ”   

A real life case of medication prescribed to just one person below – how is this allowed to go on in the UK with no accountability? 
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.

 

THE LABEL OF SCHIZOPHRENIA SHOULD THEREFORE BE ABOLISHED AND I have the most accurate report from Dr Bob Johnson (complex PTSD)  Intensive trauma therapy required and then Dr Moncrieff suggested Endocrine tests so why aren’t these tests being given to all MH patients first before a mental health label is given that is highly inaccurate and damaging in that the treatment caused injury when there are underlying physical health problems.   Why does autism now come under MH?  Under MH there is not the specialist care needed for brain injury, LD or autism and this is where something needs to be done.  If there is a shortage of beds under MH then Elizabeth could have been referred to the brain injury and trauma ward to have the referrals/assessments she requested which was not provided by her GP.

The MHA should be there to protect vulnerable people but vulnerable people are not being protected and their lives put at risk especially during this disturbing time and- every effort should be made to enable family contact which is not being done especially when you can no longer visit on the ward.

I will let you all know when or if I hear from any one of the above in this important matter that concerns so many under mental health.  This is certainly a test to see who really cares about the weak and vulnerable in the UK and this goes to the CQC – this is not just an individual case to be investigated as many people are being affected especially those who lack communication skills because they have a brain injury.

enquiries@braininjurygroup.co.uk, matt.hancock.mp@parliament.uk, boris.johnson.mp@parliament.uk, Jeremy Corbyn <corbynj@parliament.uk>, HSCCOM@parliament.uk, rosena.allinkhan.mp@parliament.uk, feryal.clark.mp@parliament.uk, NPL.Consulting.Ltd@gmail.com, carltonhouse@nhs.com, enfccg.communications@nhs.net, enfccg.patientenquiries@nhs.net, “KANDOLA, Jinjer (BARNET, ENFIELD AND HARINGEY MENTAL HEALTH NHS TRUST)” <jinjer.kandola1@nhs.net>, nora.brennan@headwayeastlondon.org, concerns <concerns@cqc.org.uk>

 

 

Just before Xmas I was admitted to hospital and underwent major surgery with intensive care in January.    I experienced the very best of NHS care and have since then made good recovery.

On my return from an outpatient’s appointment Elizabeth called in distress to say a professional had turned up at her home stating they had a warrant and that she had to go to Chase Farm Hospital for assessment and was subsequently held under S 5.2.  I do not know if relevant paperwork was in fact produced or the full details of what actually happened.   I did witness a prior visit from the community Consultant Psychiatrist and AMHP a week prior to Elizabeth’s flat where they assessed her as going downhill as she emotionally reacted in front of them.    Elizabeth had been calling Police who she trusted but unfortunately they would then call for an ambulance and Elizabeth would end up at the Horizon Suite, North Mid Hospital, where on one occasion they restrained her and forcibly injected her.    We all  dispute the MH diagnosis due to considerable conflict in the files and feel that Elizabeth has been misdiagnosed.  She spends a great deal of her time analysing what she believes to be her condition which is autism/Aspergers.  However, she has a full report by Dr Bob Johnson of accurate content which points to complex PTSD.

Before Xmas Elizabeth requested a  transfer to the Integrated Learning Team, River Front Enfield but the application was declined by a Doctor there without proper assessment/face to face consultation.

With Elizabeth sectioned once again solicitors were appointed for the forthcoming Tribunal which was cancelled twice.   I discovered paperwork was drawn up unlawfully which meant Elizabeth spent c7 days on the ward before correct paperwork was produced.    Elizabeth had won the grand sum of £1 in compensation for a previous illegal detention of 16 hours but now the same thing has occurred again but for a longer period this time.    I as  Nearest Relative looked into the unlawful paperwork thoroughly and Elizabeth shared with me section papers and reports for court purposes which I had a mammoth task in correcting.  I feared the hospital RC was deliberately trying to exclude Elizabeth from her own Tribunal so I as Nearest Relative sent all the corrected reports directly for the attention of the Judge, together with the most recent capacity assessment reports and others, which all pointed to the fact that Elizabeth had full capacity.    A different way of communicating confuses professionals to come to the conclusion that a patient does not have capacity when in fact it is the team who do not understand as they have not had the correct training.  This is why I support the campaign below by Paula McGowan for mandatory training for autism care.   Elizabeth’s mental health team were doing exactly the same, prescribing  Risperidone, Elizabeth was previously found allergic to and ignoring the evidence of this in the medical files.   The unscientific label of Schizophrenia is contested throughout her medical files which the team choose to ignore and stick with this label for their own convenience.  I would perceive this diagnosis as to be an umbrella label for underlying physical health problems that comes with it a treatment of harmful anti-psychotic drugs which some psychiatrists wrongly feel should be given for life.  Certainly they ignore the manufacturers instructions of 6 weeks.   It is clearly recorded that none of the drugs work as Elizabeth is “treatment resistant” – poor/non metaboliser.

A mother’s campaign for autism care equality for all – BBC …

https://http://www.bbc.co.uk/news/av/uk-politics-45941597/a-mother-s-c

22/10/2018 · A mother’s campaign for autism care equality for all Paula McGowan’s son Oliver died aged 18, after hospital staff gave him a drug that he had pleaded not to be prescribed, having previously suffered a bad reaction

Paula told BBC Politics Live she believed the death of Oliver, a high functioning autistic teenager from Bristol, could have been avoided if the nurses and doctors were trained about learning disabilities and autism.

Since his death, she has campaigned tirelessly for mandatory training for NHS staff. Her campaign will be debated in Parliament on Monday afternoon.

 

Covid 19 – Mental Health Care

The current situation of lockdown this has made things extremely difficult for those with mental health problems as well as many who have never had mental health problems previously because of social distancing.   Elizabeth is stuck under the mental health team and is supposed to get a phone call twice a week from her care coordinator.  Her trust has been understandably damaged in a team who have drawn paperwork up illegally for sectioning and not provided any support and the priority has been to get rid of her mother as the Nearest Relative when in fact her mother has thoroughly looked into everything in the best interest such as Open Dialogue for instance.

Elizabeth has been coping reasonably well at this awful time.  My life as a carer has always been under “lockdown” in terms of having little time to myself, juggling work with caring responsibilies.    As for social distancing as I am a carer I give Elizabeth practical help, such as shopping, cooking etc that enables her to be in the community but even with this support there are times when it is difficult.   It is practical help that is needed and also if Elizabeth could have psychotherapy over the phone.  This is something I have been looking into with the Free Psychotherapy Network as I am sometimes deluged with calls from her. With everything at a standstill all appointments are on hold – the mental health team are keeping their distance which perhaps is a good thing as their visits disturb Elizabeth who thinks they are going to section her.

Physical health is neglected on the acute ward and Elizabeth had been in agony with her feet.   I did manage to get a chiropody appointment and an operation which took place about a week ago.

I can understand social distancing in terms of professionals keeping away but this is a time during which even those who have never had mental health problems can suffer.

Elizabeth is not so anxious about Covid 19 but about getting her diagnosis for autism completed and a Neurology appointment to look at the benign tumour which is disputed most recently in the files.   I feel sure that Elizabeth’s condition is physical.

I feel sorry for those who are trapped right now in mental health institutions not allowed out or to have visitors and also care homes.    Elizabeth would quickly go downhill in such environment and also an institution where psychiatric drugs are given that compromise the immune system and are contra indicated to physical health treatment.

Certain drugs could raise the risk of serious coronavirus …

https://http://www.dailymail.co.uk/health/article-8109453/High-blood-pressure…

2:32

13/03/2020 · ACE inhibitors and angiotensin receptor blockers are medications take by at least 13 million Americans who have high blood pressure or diabetes  Coronavirus binds to cells by attaching to ACE2…

 

  • Author: Mary Kekatos Senior H

 

  1. Do you want results only for rsxsk drugs compromise immune system covid 19?
  2. Living With a Compromised Immune System and COVID-19 …

    https://http://www.everydayhealth.com/infectious-diseases/what-you-need-to…

    16/03/2020 · A weakened immune system can be at a greater risk of developing severe symptoms from COVID-19. iStock

https://www.gov.uk/government/publications/covid-19-guidance-for-the-public-on-mental-health-and-wellbeing

https://www.rcn.org.uk/clinical-topics/mental-health/covid-19-guidance

Inside a COVID-19 ward for mental health patients

https://http://www.msn.com/en-gb/video/news/inside-a-covid-19ward-for-mental

2:00

22/04/2020 · Inside a COVID-19 ward for mental health patients Sky’s Jason Farrell meets staff and patients inside Claybrook Centre, the UK’s first COVID-19 ward for mental health patients. msn back to msn home…

  • Author: Sky News

As a carer have to help Elizabeth in her home to cook, clean, look after the flat.  She can do some things for herself but suffers from anxiety and needs reassurance and so the phone is ringing frequently.  I would rather Elizabeth be in the community than on a mental health ward right now during lockdown.  The setting of an acute ward is totally wrong for someone like Elizabeth and right now she would go downhill on such a ward because of increased security and control and she would not be allowed out or have visitors right now.  However when you point this out she has been so damaged by her treatment that it is hard for her to appreciate as she is locked in her mind due to  injury caused by wrong treatment of psychiatric drugs at huge levels over so many years.

Doctors do not read past medical files and they try to justify such treatment as being best interest when the case of Oliver McGowan speaks for itself.

The main treatment is anti-psychotic drugs on the ward, not therapy.  Physical health is overlooked.   I was lucky to get an appointment for chiropodist as Elizabeth complained of having trouble to walk as she was in so much pain.  They even carried out an operation which I was able to take her too and bring her home.

Elizabeth is distressed right now that things are at a standstill not because of Covid 19.  Only half an assessment has been undertaken on autism and she would like this completed.  She also requires an an MRI scan.

Whilst Elizabeth has been fine,  yesterday evening she was not happy.  I had been preparing meals for her to take over to her flat and arrived later than usual.  She was disturbed by noise as the flat overlooks a car park.   She is hypersensitive to noise.  I did not stay long, just long enough to prepare her meal then I left to go home as she was not so happy and given space I hoped Elizabeth would settle down.

Today an ambulance was called but not by Elizabeth.  The ambulance crew were marvellous despite all the pressures they are under, visited Elizabeth who had been phoning me all morning and I had promised to go and see her in the afternoon.

For so long now I have been saying that Elizabeth’s condition is physical and I have pointed this out on many occasions.  Luckily the ambulance did not take her to hospital as that is the last place she needs to end up or referral to an acute MH ward right now.

I heard later that Elizabeth had a phone call from an AMHP from the mental health team  who we as a family know well who goes back to Cambian where attempts were made to displace me as NR and the care home Phoenix House where she had no food at the weekend where CoP allowed Elizabeth to come home thankfully.

Following the ambulance visit she had calmed right down but what should be provided to those like Elizabeth in the community I believe should be an on line counsellor but instead it has been me who has taken the brunt of phone calls today since 5.00 am.

Lockdown for me means less stress and more time to spend with Elizabeth.  Lockdown for Elizabeth is both good and bad.  Good in terms of the streets being virtually empty –  bad in terms of the cafes and shops not being open and not being able to see friends or move forward with appointments.

The appointments needed are an MRI Scan to check on the benign tumour that the Bethlem tried to dismiss – again conflict in the file as this was discovered back in 2009 where a report stated “Anterior Region Medial Temporal Compromise”.   I see this as a brain injury not a mental health condition and I am not even a Doctor or a Nurse to conclude this.

I do not trust Royal Bethnal Hospital and their dismissal of the tumour and want this to be clarified and so does Elizabeth.  The reason I do not trust them is that back in 2012 Elizabeth was given Clozapine against her wishes and Advanced Declaration.  She was seriously ill during the titration with a mews score of 3 but no ECG machines were in working order in that specialist hospital.  They were not working due to not being  charged and there was no paper.    So with reports of chest pain, high pulse, dizziness she could not be monitored due to the machinery being out of order.   How then can I trust their report of no tumour when there is reports of this nature recorded in the files.

When Dr Moncrieff suggested Endocrinology tests I had them done privately which proved a faulty endocrine system, insulin resistant –  if a faulty endocrine system then the entire pituitary glands can be affected.  None of this was done at the Bethlem from what I can see yet Metformine was prescribed off label and Bisoprolol given to counteract tachcycardia contracted during titration of clozapine.

https://www.hormone.org/your-health-and-hormones/glands-and-hormones-a-to-z/glands/pituitary-gland

The above is why I cannot accept Elizabeth’s mental health condition because I have had extensive tests done which point to a physical health condition and full hormone tests were recommended to be done at a previous Tribunal.    This takes more than a blood test.   This needs referral to an expert on hormones

https://www.wellness.com/blog/13277367/5-experts-who-are-wrong-on-menopause/beth-rosenshein

Real menopause experts would recognize menopause as a disease

Not one of these doctors showed an understanding of basic human physiology. Menopause happens because of organ failure not because the human body ever loses its need for its hormones. A person’s body works the same way at the age of 105 as it does at the age of 25. Our DNA and what fuels it (hormones, vitamins, and minerals) never changes. This means your body needs the same thing at 105 as it does at 25 to stay healthy. This means treatment should be lifelong.

What such treatment entails would need careful consideration but I have just now contacted a private clinic who are more than happy to help with any tests that the NHS may have omitted and I need to find out about these blood tests and what have been done so far.    I am awaiting a call from the GP at Carlton House Surgery in this respect.

There is no way I can accept a mental health diagnosis when it is clear the condition is  physical and I have taken top advice on this.   How many more people under the NHS are stuck under secondary care with a mental health label and told to take psychiatric drugs for the rest of their life when in fact they have an underlying physical condition and I have proven it.  Now I want the right treatment for Elizabeth in the circumstances especially when a previous tribunal panel recommended this some time ago and nothing has been done.

In light of Covid 19 it is all the more important to review and assess properly psychiatric patients for any underlying physical health conditions urgently.

 

 

 

 

 

 

 

 

 

 

 

 

Summary Prior to Lockdown:

Elizabeth called me on 21 January, 2020  that she was being held on Suffolk Ward.  Prior to that EH , Social worker had drawn up an Application for admission dated 21 January following Dr M’s visit on 17th January when he recommended Elizabeth be sectioned.   Elizabeth texted me “Mum you had better come to Chase Farm, I am being held”.   A warrant had been obtained so she told me.  I was concerned as I knew both environment and care would be wrong there.  In the absence of any care and support in the community under Enfield Elizabeth had been going downhill but this was evident leading up to Xmas and there was a lot she had to cope with including my operation.

I was suspicious by the  Application paperwork. Previously Elizabeth had been held unlawfully detained but when I challenged this I did not know about the Bostridge case: https://publiclawtoday.co.uk/litigation-and-enforcement/311-litigation-articles/22472-unlawful-detention-and-nominal-damages and we were offered the grand sum of £1 in settlement which I have had framed as a souvenir.  I have calculated the amount of compensation this time to be much more than just £1!    I was right to be suspicious as two tribunal cancellations brought this all to light.   For a  Tribunal a lot of time consuming paperwork has to be drawn up and it was even more time consuming on my part to correct all the errors contained therein on the Inpatient Nursing Report,  Inpatient Responsible Clinician Report and  Social Circumstances Report.   It took me hours and then I decided to correct the Responsible Clinician’s report full of inaccuracy.  When I saw the reports I thought here we go again!  I looked at the worst scenario – my Displacement of NR case and I thought I had better prepare all my court papers well in advance so I produced all the templates for this also.   It is very important to get the records correct and I am pleased Elizabeth showed me these papers in order that I could amend them correctly.

Elizabeth has been only just released from hospital after being detained on 21 January.  I am relieved especially in light of current circumstances.   Elizabeth is back on 2mg Risperidone –  previously found allergic to and (pink tablets too).   I am going to have to write requesting the 1.5mg of the white tablets but this should never have been prescribed in place of therapy and to ignore certain file evidence. This drug makes Elizabeth tired, she is complaining of neck pains,  problems with her eyes and joint pains.  I’ve always suspected underlying physical health condition.   An autism/Aspergers assessment was carried out but not sure if this was completed.  I am relieved she is out because of the Coronavirus and strict restrictions that could be imposed on patients under “care”  deprived of liberty and not allowed visitors and held just like a prisoner.

Covid 19 – UK

Up until this week I had been travelling to Central London on public transport but this is left open for critical workers travel to and from work.  Contrary to newspaper works showing photos of packed tubes and trains I did not experience anything like this this.   I took precautions and wore gloves to wear and mask and noticed others likewise doing the same. There was no cause for concern on social distancing as the tube carriages I travelled on were empty.  The tubes do not stop at quite a few stations now that do not have interconnecting services.  On the final day of travel I was the only one in the carriage.  On arrival  home I would further take precautions of washing clothes and showering  as apparently the virus can survive on surfaces at differing lengths of time dependent on which type of surface.

https://www.businessinsider.com/how-long-can-coronavirus-live-on-surfaces-how-to-disinfect-2020-3?r=US&IR=T

In the central area of London where I work, pubs are now closed, cafes and restaurants and now hairdressers.  It is like a ghost town – people are taking this seriously.  Supermarkets can be seen with queues waiting outside and security guards monitoring the amount of people allowed in to the store at any one time.  The area where I work is normally teeming with people and has markets on during the week but now there is like an eerie silence, deserted streets, very few people and cars on the road.   Most employees now working remotely from home abiding by Government guidelines.   Elizabeth’s sister no longer lives in London but works for a nursery school –  all schools now closed for the foreseeable future.

Restrictions on movement even greater now than before  with Police issued with greater powers.   https://www.express.co.uk/news/uk/1259275/uk-lockdown-fine-can-police-arrest-coronavirus-lockdown-boris-johnson-statement  “you should not be meeting family members who do not live in your home”.  “you should not be out except shopping for anything essential”   

I have just looked at the map where you can track local cases and can see that the numbers are up from when I last looked from 60 to 110 cases.  Looking at London as a whole, there is no doubt that this area is worst affected and because it is densely populated it is no wonder.  I would agree the necessity of the Government’s actions of self-isolation and measures in place for social distancing but where does this leave people like Elizabeth.

Elizabeth was discharged only recently and it would not appear that she has any care in place whatsoever.

The care Elizabeth needs in particular is help with budgeting, managing her flat in terms of paying bills, a buddy, help with attending some appointments.  All Ive heard from Elizabeth is that there are two people considered as being a “buddy”.  At the moment nothing has been provided and no one communicates with the family to let them know.  I only hear directly from Elizabeth.  Because I am her only carer right now I have no choice but to go out and get her shopping, bring the shopping to her flat because she is currently without a bank account due to disturbing transactions.  A vulnerable person might be taken in to a cheap foreign website for instance offering cheap goods but unwittingly doesn’t realise that regular money to the tune of £100 is coming out for a subscription –  thank I have Power of Attorney but if I was not checking on this who would?   This has left Elizabeth without her bank card and would have left her in a very difficult position if I had not stepped in to help with the shopping and money needed for food and to pay bills.  Elizabeth would have quickly gone downhill.   The new bank card has still not been received and due to the Coronavirus situation everything is virtually at standstill but over £300 had been deducted by scam companies and hopefully hopefully the dispute raised will be dealt with fairly in due course.

The current situation is disturbing to me but even more disturbing to many other people who perhaps have not had to deal with situations such as having a relative under mental health care in the UK who has been sent to the most atrocious institutions as far afield as Wales.   My heart goes out to people who have their relatives in such institutions right now – there has got to be a better solution as I know from the desperate phone calls I used to receive from Elizabeth that at times she was on the verge of giving up.    Visiting was very restricted in some of these prison-like private “hospitals”.   You had to book for a slot to visit as they did not have the facility, then a member of staff would stand over you recording every word.   Right now it must be even worse and I see other desperate parents writing on Twitter and look back to when Elizabeth was at Cambian in Wales. Now everyone is under lockdown and restricted with their freedom but for some, this has been the case for many years.    I am talking about the patients who are deprived of their liberty for sometimes as long as 12 years in these institutions and the knock-on effect to their families/relatives.

Current news is bleak and worsening but I keep an open mind and always look beyond for the real truth and notably there have been plenty predictions.

https://www.msn.com/en-gb/news/coronavirus/nhs-to-move-nurses-to-london-to-help-with-coronavirus-tsunami/ar-BB11L9sW?ocid=spartandhp

Coronavirus: London’s Excel centre set to open 500 hospital beds next week

https://www.express.co.uk/news/weird/1254439/Coronavirus-death-toll-rises-COVID19-Bible-prophecy-Book-of-Revelation-latest-news

https://www.express.co.uk/news/weird/1218614/ible-warning-end-world-2020-new-year-book-of-revelation-jesus-second-coming-spt

https://www.express.co.uk/news/weird/1260158/Nostradamus-2020-predictions-true-coronavirus-COVID19-latest-news

A few years ago I had persistent cough with temperature which I could not rid of. I’d never experienced anything like it before and thought I may have contracted this through travelling on packed tubes/trains.  Elizabeth was at home then and having to  cope without support probably led to decline in health and recovery from this viral infection took a long time.

Whilst I listen to mainstream news both papers and media I see far beyond this and what is “allowed” to be reported but cannot dismiss the current situation as being most disturbing:

https://talentrecap.com/bill-gates-has-been-warning-us-about-possibility-of-coronavirus-for-years-we-didnt-listen/

 

https://www.nbcnews.com/tech/social-media/coronavirus-conspiracy-video-spreads-instagram-among-black-celebrities-n1158571

Coronavirus conspiracy video spreads on Instagram among black celebrities

Instagram and Facebook have made a concentrated effort to rid their platforms of false information, but some conspiracy theories have proven hard to stop.
Image: Bill Gates

Bill Gates speaks about viruses in a 2015 Ted Talk.Courtesy TED

By Brandy Zadrozny

A video pushing the unfounded conspiracy that Bill Gates is responsible for creating the coronavirus has gone viral on Instagram, propelled by some black celebrities including comedians Cedric the Entertainer and D.L. Hughley, and professional fighter Derrick Lewis.

This video has been viewed more than 2.2 million times, according to data from CrowdTangle, a social media analysis tool owned by Facebook, which also owns Instagram. The current iteration of the video originated from the account @thefallbackup, a self-described “influential mystic” with 69,500 followers. The video was reposted by 20 verified Instagram users, and more than 50 other users.

“Bill Gates either predicted or planned the coronavirus outbreak,” the text on the video reads, before playing a clip from a 2015 TED Talk in which Gates explains that a highly infectious virus could be more deadly than war.

Cedric the Entertainer posted the video to his Instagram account and wrote, “So they knew!!!”. The video has been viewed 367,000 times since he posted it Thursday. “Watch out for Big Pharma,” he added.

“Hmmmmm….” Hughley wrote next to his post along with an emoji of a face with a monocle.

“Ok this is scary. Looks like someone or some corporations knew this would happen. Coincidence?? I’ll let you guys decide,” wrote Gary Owen, a comedian who once hosted the BET comedy show Comic View

https://www.bing.com/search?

q=american+university+funds+bill+gates+funding+into+compter+simulation+into+covid+19&form=EDGEAR&qs=HS&cvid=7733cc6eb7b042abb100e740fd8528b5&cc=GB&setlang=en-GB&plvar=0&PC=MSE1

COVID-19 Coronavirus: A Fake Pandemic? Who’s Behind It? Global Economic, Social and Geopolitical Destabilization

Unbelievable — Gates Foundation Predicted 65 Million Deaths Via Coronavirus 3 Months Ago!!!

https://www.bing.com/videos/search?q=David+Icke+Interview&FORM=VDMHRS

 

Breakthrough: Roche develops first commercial test for coronavirus

This scientific breakthrough may hold the key to defeating the coronavirus

https://www.fiercepharma.com/pharma-asia/china-turns-roche-arthritis-drug-actemra-against-covid-19-new-treatment-guidelines

United Kingdom cases:
Updated 27 Mar at 07:46 local

https://finolamoss.wordpress.com/2020/03/13/coronavirus-a-tool-of-global-control/

How I agree with what Finola Moss and David Icke report.

Today has been a busy day getting together all the food for Elizabeth’s Birthday party and fortunately I had help in doing this.

I’d ordered pizzas, from Sainsburys vegetable curry and rice.  It is not the weather for cold food but I prepared  a Greek salad – a nice mixture of food and cakes and healthy drinks.

I was grateful for the assistance by a friend in carrying so many bags onto the ward and everyone sang Happy Birthday.  This was a bit overwhelming for Elizabeth.

Suffolk ward Chase Farm Hospital kindly allowed me to do the little party for Elizabeth and all her friends.  She has made some very nice friends in the short time that she has been back on the ward.

It was last week I received a text message from Elizabeth to ask me to call and see her that she had been taken from her home to Suffolk Ward a- warrant had been obtained. I do not agree with the way that recall to hospital is conducted as a result of negligence by non provision of any kind of care in the community.

I had received a phone call from a social worker claiming to be an AMHP about a week prior to say that 2 Drs and 1 AMHP had recommended Section 2.

Since July 2019, Elizabeth had been living in a very nice flat –   the only decent accommodation she has ever had in the local area.    The flat is spacious, she has all her possessions together and it is within walking distance of the family home which means I can help her at weekends when I am around but I had not been well since Xmas and for a few weeks was unable to go round to help Elizabeth.

Friendships Elizabeth had formed in the community have not been good and have brought her down.  Some of these friendships have been disastrous and Elizabeth who has a different way of interpretation can take things the wrong way and this can push friends away.  Very sadly this has led to isolation with no help and support in the community since July 2019 decline was evident.  At this time of year many people can feel affected by the weather which is miserable, bleak and cold.

With nothing provided to do in the community – no support worker/mentor Elizabeth was turning to Samaritans, to my friends, then sadly Police to talk to as well as myself of course.  Police not knowing Elizabeth personally would hear that she was desperate for f help/support.   She had never self-harmed before but may have said that she did not feel like living.   Police would call for an ambulance and she would end up in A&E when all she wanted was someone to talk to.  Sometimes she would get brutal treatment under the MH suite of the A&E.   The last time Elizabeth told me she was injected and that she was pinned down by several staff and overheard them talking about resusc. in another room as this was a face down restraint which is appalling.   When Elizabeth’s friendship had ceased, a toxic friendship which was detrimental to both,  Elizabeth made other friends who also had issues and lack of understanding can arise without any guidance in the community from the professionals involved.  This friendship also appeared to be a disaster which led to isolation, a feeling of desperation as Elizabeth had told me that she had trouble processing information and that no one understood her.  For instance she could say something and mean the opposite.

Elizabeth was under the Community MH team again and they were contacted presumably by Police or Ambulance who sent round the Crisis Team.    The Crisis Team just sit and chat and what is needed is a mentor or buddy or support worker to give practical help even it is simply to do with socialising and social skills.   I am quite astonished that this was once again not provided because it was certainly promised and documented in the care plan that Elizabeth had full support to maintain the tenancy, to budget, and other forms of support which was not true at all.  This was not being provided by her care coordinator.    She certainly needed help with budgeting and most things fell on me.

Elizabeth called in to the Learning Disibility/Autism Group office.      She had tried to get a referral and when I heard that she seemed to be getting nowhere with this I tried to help.     The GP referred her.   I then helped her complete the forms and everything seemed to be going OK.   Elizabeth was waiting for an assessment by them in the hope  some provision could be made in the form of a mentor in the community who could understand and communicate with her effectively.    The content of the form completed was applicable in every way to Elizabeth in terms of developmental disability which goes way back in the files and since Elizabeth was off all medication she spoke very clearly that she had problems that went way back to primary school not secondary school –  the problems she described were developmental and this had been identified when I provided private care for four months.

I was with Elizabeth at her flat when the care coordinator called along with the Responsible Clinician of the community care team who hardly ever sees Elizabeth.   Elizabeth was not calm in their presence and flared up when she saw them and unknown to her they were there for the purpose of doing a MHA assessment.  She had trusted them and let them into her flat.  I could hear them talking about recalling her back on the ward and supportive housing was mentioned but look at the shocking places that Elizabeth has been provided under the local area.    Elizabeth told me this was  not what she wanted but she did want support in the community.    The care plan stated  S117 aftercare but this was never provided.   I had managed to obtain the new care plan.

In the new/current care plan it says No to S117 which I have found out is illegal following  Section 3 and that she should be entitled to such care.

I had also heard an Agency was approached to work with Elizabeth but declined and this led me to believe that under a MH team Agencies they used may not have the specialist communication skills of say a Learning Disibility nurse and I have seen Paula McGowan’s campaign that such training should be made mandatory which I could not agree with more.   This is why we both wanted the referral to the other team as it is not impossible to find someone to work with Elizabeth but if they are not correctly trained and do not have the right communication skills then the effect of such professionals can be as  toxic as the  friendships Elizabeth had formed.

It is sad that she is back on the ward and the ward is no place long term for Elizabeth  who also suffers from complex PTSD.

The entire family put in effort to making her flat nicer so she can now listen to music, play videos, watch TV.  We have done this for her Birthday and now she is stuck on the ward again and we are back to square 1.

I think Elizabeth enjoyed the little party today and I have to commend Suffolk Ward for allowing this to take place.    There was music and staff got up and danced and so did the patients.  They provided her with a Birthday cake.   I saw Elizabeth smiling a lot and one consolation is the fact she has made some lovely friends on the ward.  When you talk to these friends I feel what on earth are they doing on the ward and many are highly intelligent.

My view is that such wards should not be used long term and many end up on the wards because of lack of community care and I think they become isolated in the community  with nothing to do except go shopping and in this awful weather too it can affect anyone not just those with mental health conditions.

I believe community care is lacking and totally lets people down – there needs to be more investment in this area.  A solution would be a network of peer support workers is  and open dialogue so that people like Elizabeth do not become isolated and go downhill.  If someone called on people like Elizabeth to take them out in the community, to help build up their social skills and confidence this would be brilliant.

There used to be a very nice group where Elizabeth would be picked up and taken out in the evening for quiz nights, meals –  a little social group and this is where funding should be going on, not court and displacement of the Nearest Relative cases.   Funding needs to be spent in the right way and a start would be finding out the right things that are required by giving every patient a questionnaire to see what they would like provided in the community, not just dumping them back to their schemes/accommodation unsupported in any way.   The answer is certainly not medication –  in Elizabeth’s case the answer is friendship and help in terms of friendship and socialising, then practical support which should have been given in the first instance.

My final comments go on the new care plan.   I do not feel it should be allowed that strangers such as admin officers make entries that are completely untrue and misleading.   Records need to be accurately maintained and the new care plan is a disgrace.

I am having to correct this new care plan as it is totally inaccurate.   The admin assistants work at St Ann’s Hospital and I have previously complained about the inaccuracy of the care plan and some disturbing false comments therein.     No-one has taken any notice and I have had to complain to the Chief Executive of the Trust.

I now want these comments taken out of the care plan completely and I am correct it myself to ensure total accuracy.

 

 

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