PALIPERIDONE (XEPLION)

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.

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