—— Original Message ———- From: Nnennaya Aitalegbe DEPUTY WARD MANAGER<NnennayaAitalegbe@cygnethealth.co.uk>
To: Susan Bevis <
Date: 04 July 2020 at 14:26
Subject: RE: Visit – Tuesday 7 June 2020

Good evening Mrs Bevis

Thank you for your email.

Following our conversation, I have spoken with the responsible clinician she has confirmed that attending ward round at this present moment will not be ideal  as LB is currently very unwell. ******** currently reports that everything seems too much for her and she is worried about your  proposed visit. She is being supported on the ward and encouraged to remain focused.

Best wishes

Nena

I spoke to my daughter yesterday who sounded a bit happier on the phone yesterday. Not once has she phoned on HER phone. She told me she had made a couple of friends but they were all starving and could I bring some food with me so she could share with her friends. I asked if she wanted me to visit and she said “yes” – I asked her more than once and I mentioned that I had requested to come to the ward round and asked whether Nnenna had spoken to her about it and she said “no”. The letter above is in stark contrast to what I was told. Nnennaya Aitalegbe is the Deputy Ward Manager of Cygnet Godden Green Sevenoaks who is saying that Elizabeth does not want me to visit and THAT IS NOT TRUE AND I HAVE WITNESSES.

I told Nena that I would be coming anyway as I had promised to as I had agreed to bring her food. Never before has a Cygnet Hospital treated me this way or my daughter and this needs looking at. There seems to be different rules here at Cygnet Godden Green, Sevenoaks to other Cygnet hospitals. I am most concerned by the way Nnennaya is trying to deprive access to seeing my daughter just like Cambian did with RC Allyson Witts stating she was not well enough to come for Xmas yet she was brought down flanked by two nurses who were ordered to stay all the time with her.

I telephoned Cygnet Godden Green yesterday and spoke to Deputy Ward Manager Nnenna Yaaitalegbe and I am waiting to hear as to whether my visit will be agreed next Tuesday for ward round. She said she would have to ask Elizabeth and arrange with Dr Ruvini Senesinghe, the RC (Responsible Clinician). As yet I have not heard anything.

Elizabeth has been at Cygnet Godden Green 2 weeks now. Dr Ruvini Senesinghe said it would be Ok to visit and to contact the Ward Manager to facilitate. Normally Cygnet would have a visitor’s room so I enquired whether this could be booked as it is a long way to travel. When I asked whether an advocate could be present Nnennay commented that Elizabeth already had an advocate but I explained that the advocate was for me as Elizabeth’s sister could not come as planned. I am waiting to hear back from Nnenna. Mencap know of Elizabeth’s situation and were very helpful. They put me in touch with an organisation called access charity.

Access Charity

https://www.accesscharity.org.uk

The above organisation deals with:

Access to justice and enforcing the right to social care. We have set up a Legal Network to ensure that people get the social care that they have a right to so that they can live fulfilled lives in the community.

It has been social care that has failed. “there is no structure in the community” said Elizabeth, her days filled aimlessly with going out shopping alone, nothing to do, no mentor, no support worker, which I know in some areas is provided. Elizabeth has never had help in the community despite living alone in a flat so I had to help her clean the flat, cook healthy meals and not been able to shield as the Government recommended.

Yesterday was distressing hearing Elizabeth say she felt like she was going to die after the forced Paliperidone injection. She described 6 members of staff pinning her up against a wall and said for the next two days she felt so ill that she couldn’t move from her bed.

This injection should be given once a month only at the now lowered dosage of 100mg from 150mg previously prescribed by Suffolk Ward. However I am concerned that this has been given more frequently by Castle Ward as it sounds as though from what Elizabeth has told me this been given twice already and she has only been there 2 weeks. This is why I would like to go to the Ward Round. I have heard from leading experts that the administering of this particular drug is extremely specialised requiring a great deal of caution. I was led to believe the dosage had been lowered but from what Elizabeth told me it sounds like the injection is being given more frequently in which case it is in fact being increased.

I am in touch with those who have expert knowledge on drugs and I have welcomed opportunity for Elizabeth to be included most recently in the research by Professor Philip McGuire on CBD. However I was told by Dr Ruvini Senesinghe this would not be possible as not recommended by NICE. The only option was to put her back on a drug previously found to be allergic to because NICE have not examined the success of Professor Philip McGuire’s research. On section 3 there is nothing you can do to challenge treatment – of great concern is NICE do not seem to take enough into account harm done by their recommendation of such drugs known to cause harm, going through lawsuits in the US, some here in the UK. Doctors ignore their NICE guidelines and ignore manufacturer’s instructions/contraindications.

I was initially excluded from Elizabeth’s recent tribunal by video link from St Pancreas Hospital Ruby Ward on the grounds I disagreed with treatment. The team tried to use the usual excuse that Elizabeth did not consent. However Elizabeth had in fact given consent and I then had to be included at short notice. At the Tribunal I was asked was “are you a professional who has knowledge of the drug treatment” to which I replied “no” I am a mother but have sought expert opinion backed by research from more than one expert on the drugs in order to conclude Elizabeth’s treatment was wrong. It is not as though I as a mother know better than the doctors but had sought scientific research and gained knowledge from this via experts. Drug treatment is an area CQC should be concentrating on most of all (yet say their inspectors have no knowledge on drugs) as wrong prescribing can cause injury and death and here is an example of such:

PRESCRIBING AT CYGNET

Below medication prescribed by a different branch of Cygnet to just 1 patient.

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.

Surely on this level of drugs someone could suffer enormous injury and this could lead to death?

CQC I do not agree! If I as a mother can take time and trouble to contact pharmacologists/experts on the drugs then so can the CQC and that is exactly what I would do if I was an inspector with the CQC – if there was anything I did not know then I would find out about it by experts.

It is apalling Tribunals and courts take the same attituded “we are not experts on prescribing”, trust the doctors and brush aside scientific evidence backing prescribing at huge levels as above. The MHA criteria is “risk to self and others” – this should take into account the risks to the patient from faulty prescribing. I as a mother have accumulated vast scientific evidence on prescribing and if it was up to me I would have patients tested to see if they could metabolise the drugs first as Elizabeth has had the P450 liver enzyme test done which stated “poor/non metaboliser”, I had to appoint a private GP to analyse the test results carried out by world’s leading experts Erasmus in Rotterdam. This is disgraceful as the tests should be available to everyone on the NHS in all GP surgeries because in the long term, these tests could save money by less prescribing, resulting in less injury inflicted upon patients who suffer adverse reactions which are not symptoms of so called “illness”.

” It is utterly appalling that her life is being taken away and that at only 33 she has lost all the aspirations she should have enjoyed.

Yes, very true, Elizabeth once wanted to be a chef. She went to college, had a job, was learning to drive and wanted to travel. Her life and mine have been ruined by the NHS. She once looked like a model but is now a size 20. Doctors under NHS have worsened her condition by reckless concomitant prescribing at max levels experimenting whilst ignoring underlying physical health concerns. They all back one another and involve other doctors to support them when they do not want it to look like they are directly involved. So they send someone away from the local area and pay huge sums of public money in order to get backing. Elizabeth has been sent all over the country far and wide “we are guided by the local Trust” said the RC of Ruby Ward St Pancreas – they are instructed, and stick together on opinion.

 To: susanb25
Date: 22 May 2020 at 13:03
Subject: Re: Xeplion (Palperidone)

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

YES, ELIZABETH’S POTASSIUM LEVELS ARE LOW AND I HAVE EXTENSIVE TESTS DONE TO PROVE THIS.


To: susanb25
Date: 22 May 2020 at 12:47
Subject: Re: Xeplion (Palperidone)

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:

Conditions:


  • 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:Conditions:
    • breast cancer
    • diabetes
    • 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
    • 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
    • chronic heart failure
    • abnormal EKG with QT changes from 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
    • diffuse Lewy body disease
    • cataract surgery
    • floppy iris during eye surgery
    • abnormal muscle movements
    • chronic kidney disease stage 2 (mild)
    • chronic kidney disease stage 3A (moderate)
    • chronic kidney disease stage 3B (moderate)
    • chronic kidney disease stage 4 (severe)Allergies:
    • Risperidone Analogues


      https://www.netdoctor.co.uk/medicines/brain-nervous-system/a8793/xeplion-paliperidone/
    • “As for lesions in white matter there is evidence of this causing psychosis but this is normally in older adults or those that have suffered cerebral infarctions.  The Journal of Neuropsychiatry and Neuroscience does advise clinicians to scan for frontal lobe lesions in patients presenting with psychosis and the endocrinology journals advise examination of the thyroid and parathyroid, since lesions in the parathyroid can also cause psychotic symptoms.  Late onset psychosis is often associated with this type of injury.

Elizabeth had a cyst – how can this suddenly disappear? Also I appointed a private Endocrinologist who did extensive tests which revealed underlying physical health conditions that should have been monitored but HAVE NOT BEEN under the NHS – conditions such as thyroid/PCOS – she is also insulin resistant and this is why I cannot agree with the diagnosis. I know there is something that is physically wrong and I am not even a Doctor. Doctors stated throughout the files “lets rule out anything organic” – so what is happening in my opinion is that Doctors look for a quick and cheap solution and when a patient such as Elizabeth complains they do not feel well then this is simply ignored – they just carry on prescribing knowing full well that what they are doing is harming someone’s physical health and wellbeing and a Doctor should do NO HARM.

As for the ‘diagnosis’. The definition psychosis is not in itself a medical diagnosis but refers to presentation of behaviour the patient.  This can be delusions, hallucinations and agitated or violent outbursts unconnected with immediate environment.

 If Elizabeth presents with any of this kind of behaviour it will be described as psychosis.  It is for the purposes of immediate medical intervention irrelevant what the underlying cause might be.  The first intervention has to be directed at attenuating the behaviour and then it is possible to look for potential causes.

There is bias re the first paragraph above as the team who made home visits prior to the CoP case tried to make out home environment was wrong by nasty reporting – in actual fact it has been questioned at one tribunal as to why Elizabeth remained problem free whilst at home. Whilst I reduced the Clozapine that gave her heart problems and NMS she revealed the full truth about the abuse she had suffered under care which showed the diagnosis to be completely wrong. I only sought private help at enormous cost in Kent when Elizabeth developed a nasty cough – this was an anticholinergic reaction so I was told. My search for private help revealed there was no facility in the UK who could help someone who had suffered injured and come off prescribed drugs which was so wrong as I had proved Elizabeth’s condition to be trauma and not schizophrenia – in fact she spoke clearly and said “eleven years of my life ruined – eleven years on these drugs” . Facilities need to be provided in the UK to help with drug withdrawals and assessments particularly when the diagnosis has been proven to be wrong as in Elizabeth’s case.

  • As I have explained before section 3 MHA1983 is a legal mechanism for treating patients without their consent, informed or otherwise.  There is no necessity to obtain a patient’s consent on section 3, the criteria for treating without consent are simply to save life, to prevent a serious deterioration, to alleviate serious suffering and to prevent the patient from behaving violently or being a danger to self or others (as long as the treatment represents the minimum interference necessary).

The above wrong. Why are people under the MH treated like second-hand citizens? This is not saving life – lives are being ruined. Who can honestly say no harm is being done when you look at what doctors are prescribing as per example above that can lead to death. To alleviate serious suffering is wrong too – this has increased suffering to Elizabeth and I have proven that with the right care in the right environment Elizabeth could get well at a fraction of the cost. I would rather Elizabeth be sent far away to get the right treatment in the right environment which is not a PICU/acute ward. Also it is not recommended hypnotherapy under NICE Guidelines but when I sent Elizabeth to Susan Hepburn of Harley Street this worked brilliantly. I now know why the team tried everything to persuade Elizabeth not to go and that was because this could have revealed everything she suffered under a certain scheme in the community whereas my intention was to speed up the process of provision under the Person Centred Approach which had been going on 6 months and provided nothing for her to do in the community as her days consisted of aimless shopping – chores expected to be undertaken in her home – a studio flat within a MH scheme. On 800mg Quetiapine “how can anyone function on this level of drugs in the community?” This led to Akathisia and on Clozapine, Neuroleptic Malignant Syndrome. In other words more harm than good.


To:susanb25
Date: 12 June 2020 at 20:47

The informed consent legislation does not apply to psychiatric medications administered under s3 MHA 1983.  It only refers to non-related physical treatments so even Metformin can be given on the grounds it is related to the psychosis. ”

Well this needs to be changed! a

Xv Finland 34806/04 [2012] ECHR 1371, [2012] MHLO 128 …

www.mentalhealthlaw.co.uk › X_v_Finland_34806 › 04_(2012)_ECHR_1371,_(20…

Mental Health and Mental Capacity Law Blog, ‘X v Finland – Are we in trouble?’ (18/7/12). This article argues that ‘[i]t is at best highly doubtful that the approach in the Mental Health Act 1983, where compulsory treatment flows from detention automatically and with limited distinct procedural and substantive safeguards, is consistent with Article 8 of the ECHR’.

The above highlights total inequality between mental health/physical health and wellbeing and that treatment given is the cheapest option under mental health keeping someone drugged for life regardless of physical health is for convenience with diagnoses given on observation of so called “symptoms” rather than question of underlying causes.

This is completely wrong and to place people like Elizabeth on a PICU ward is wrong too “I will never get well in this place – I may be coming out in a body bag” Elizabeth’s most recent words at her distress of being on yet another PICU where she is on 1-1 and cannot even make a phone call without staff listening to every word. She is followed around everywhere. This is the most restrictive care ever that Elizabeth has had but could be ordered by the local area (Enfield) for all I know who are paying vast sums of money for a stay up to 3 months. Whatever happened with “least Restrictive Care” – I attended their conference at Royal College of GPs.

When are Doctors going to take note of:

Coincidentally Risperidone is also associated with raised serum aminotransferases which in effect has the same consequences as alcohol induced fatty liver.  
 

On the last point talking therapies and hypnotherapy do have some degree of success but they take years and enormous discipline on the part of the patient. ” 

Not necessarily many would opt for this rather than drug treatment for life. Choices are not given and there is inequality under MH as compared with physical health care.


Date: 16 May 2020 at 10:11
Subject: Brain damage caused by PTSD

  • Using data from the Swedish National Patient Register and other nationwide health registers, investigators in this population-matched and sibling cohort study identified individuals first diagnosed with stress-related disorders between January 1, 1987, and December 31, 2008.
  • Exclusion criteria were history of neurodegenerative diseases, conflicting or missing data, lack of data on family links, or age 40 years or younger at study end. 
  • A matched cohort design allowed comparison of 61,748 individuals with stress-related disorders (PTSD, acute stress reaction, adjustment disorder, and other stress reactions) with the general population (595,335 matched unexposed individuals).
  • A sibling cohort allowed comparison of 44,839 individuals with stress-related disorders with their 78,482 unaffected full siblings. 
  • Follow-up began at the later of age 40 years or 5 years after the diagnosis of stress-related disorders, and concluded at the first diagnosis of a neurodegenerative disease, death, emigration, or the end of follow-up (December 31, 2013), whichever came first. 
  • The National Patient Register allowed classification of neurodegenerative diseases as primary or vascular, as well as separate analyses for AD, PD, and ALS. 
  • Median age at the start of follow-up was 47 (interquartile range, 41-56) years, and 24,323 (39.4%) of individuals with stress-related disorders were men.
  • Median duration of follow-up was 4.7 (interquartile range, 2.1-9.8) years. 
  • Risk for neurodegenerative diseases was 57% higher in persons with a stress-related disorder than in unexposed persons (HR, 1.57; 95% CI, 1.43-1.73) in Cox proportional hazards regression models, controlling for multiple confounders.
  • Risk increase with stress-related disorder was greater for vascular neurodegenerative diseases (HR, 1.80; 95% CI, 1.40-2.31) than for primary neurodegenerative diseases (HR, 1.31; 95% CI, 1.15-1.48). 
  • Risk was statistically significantly increased for AD (HR, 1.36; 95% CI, 1.12-1.67), but not for PD (HR, 1.20; 95% CI, 0.98-1.47) or ALS (HR, 1.20; 95% CI, 0.74-1.96). 
  • Findings in the sibling cohort confirmed those in the population-matched cohort.
  • Sensitivity analysis showed some attenuation of the associations after additional adjustment for cardiovascular diseases diagnosed before the end of follow-up.
  • On the basis of their findings, the investigators concluded that stress-related disorders are associated with substantially increased risk for neurodegenerative diseases later in life.
  • There was a statistically significant association of stress-related disorders with AD, but not with PD or ALS, which may partly reflect the relatively young cohort and the low incidence of PD and ALS at a younger age.
  • The observed associations were independent of multiple confounders including familial factors, based on similar results in the population-matched and sibling cohort analyses. 
  • The stronger association for vascular than for nonvascular neurodegenerative diseases suggests a potential cerebrovascular pathway.
  • The lead investigator told Medscape Medical News that finding strategies to lower the risk for cardiovascular diseases in patients with stress-related disorders may also lower future risk of developing neurodegenerative diseases. 
  • Biological mechanisms may underlie the association between stress and neurodegeneration, as chronic, repeated, or intense stress may impair the hypothalamic-pituitary-adrenal axis and alter stress hormone levels.
  • Stress increases cortisol level, which may induce microglia and astrocyte activation, overproduction of proinflammatory cytokines, and oxidative stress, potentially causing chronic neuroinflammation and subsequently increasing the risk for neurodegenerative diseases.
  • Similar mechanisms may also explain the link between psychological stress and cerebrovascular impairments, and cardiovascular diseases are known to be long-term physiological health consequences of stress-related disorders. 
  • Vascular factors may therefore explain the association of stress-related disorders with neurodegenerative diseases and the relatively stronger association with vascular neurodegenerative diseases than with primary neurodegenerative diseases.
  • Vascular factors may also worsen symptoms and accelerate progression of AD; AD and vascular dementia often occur simultaneously and are difficult to distinguish clinically. 
  • Another factor contributing to the observed associations may be lifestyle changes after the diagnosis of stress-related disorders, such as increased smoking and alcohol use, substance abuse, or sleep disorders, which could increase risk for neurodegenerative diseases.
  • An expert commenting on the study for Medscape Medical News noted that poor lifestyle choices such as these could significantly affect brain and vascular health. 
  • That expert highlighted the potential for identifying those at risk for dementia based on stress disorders earlier in life, which might allow earlier interventions to try to change the brain and body’s physiological and behavioral response to stress. 
  • Educating the general population regarding these findings and their significance could help them seek the appropriate treatment for chronic stress or trauma. 
  • Study limitations include reverse causation and surveillance bias, as cognitive impairment, depressive symptoms, and other symptoms of stress-related disorders may be early signs of dementia and PD, or stress-induced decline in cognitive function may result in earlier dementia onset among patients with stress-related disorders. 
  • However, the 5-year lag time in all analyses argues against reverse causation or surveillance bias.
  • Other limitations include possible underestimation of the real association between stress-related disorders and neurodegenerative diseases, lack of validation studies for the diagnoses of stress-related disorder in the Swedish National Patient Register, insufficient statistical power for analysis of rarer outcomes such as ALS and PD, and potential residual confounding. 

Clinical Implications

  • Stress-related disorders are associated with substantially increased risk for neurodegenerative diseases later in life, based on a Swedish population-matched and sibling cohort study.
  • The stronger association for vascular than for nonvascular neurodegenerative diseases suggests a potential cerebrovascular pathway.
  • Implications for the Healthcare Team: Finding strategies to lower the risk for cardiovascular diseases in patients with stress-related disorders may lower future risk of developing neurodegenerative diseases.

The above should be taken into account when placing someone like Elizabeth who has complex PTSD on either acute ward or PICU wards which are noisy, volatile and stressful for the patient. In contrast, a care farm would be the answer – a natural environment with animals then it would be not necessary to restrain and inject causing further trauma to the patient. Consideration should be given in the UK to providing correct facilities such as this. Camphill Community Trust have good facilities where people who have learning disabilities and autism can learn new skills and work with specialist staff in therapeutic environments. Why should facilities such as this be deprived to MH patients who are misdiagnosed.

CQC logo

Cygnet Hospital Godden GreenCQC overall ratingRequires improvement4 July 2019See the report

CYGNET, GODDEN GREEN SEVENOAKS, KENT TN15 0JR

RC DR RUVINI SENESINGHE

RC OF SUFFOLK WARD CHASE FARM HOSPITAL DR HELEN MOOREY

TRANSFER DATE 25TH JUNE 2020

Having been held in seclusion since 7.00pm Saturday 20 June, Elizabeth was finally released from seclusion by Suffolk Ward this morning (24th June) following calls from myself /other family members and friends who had no luck in getting through to her. We knew nothing about what happened – someone apparently set fire to Suffolk Ward. This incident was not caused by Elizabeth. When I got to hear I was told by MH Reception member of staff that “noone was hurt” – it was just a little fire”. Around this time Elizabeth had complained that had been was cooped up on the ward for two days without fresh air and mentioned some patients had barricaded themselves into a room on Suffolk Ward and that staff wanted to inject them. Here is her exact message: “We’ve barricaded ourselves into the bedroom on ward with friends please come and call the police”. Elizabeth’s sister visited Suffolk Ward that evening to bring with her hot barbeque food but was not told her sister was in seclusion. Now we know Elizabeth did not get the food and no doubt this was thrown in the dustbin. No-one informed us about the incident of fire or the barricading by patients in a room but this all needs to be investigated by the CQC . Furthermore they need to speak to my daughter Elizabeth because I have seen nothing but error and distortion of truth by professionals in file notes and records by BEHMHTNHS (Barnet Enfield and Haringey MH Trust) that I have now had time to study in detail. They state that Elizabeth got into a fight but serious incidents that have occurred under their care through lack of observation in the past have been covered up. It is wrong to cover matters up as the truth always comes out in the end. It is best to be honest and open and I would have respected this. I am asking for Barnet Enfield and Haringey MH Trust’s Policy on seclusion. I thought seclusion should be no longer than 72 hrs? Elizabeth was in seclusion from Saturday 7 pm until sometime this morning and I would like to know how long? They knew Elizabeth has been multiply abused under MOTI VILLA THE RIDGEWAY ENFIELD EN2 where crack cocaine was being dealt and captured on CCTV a 2 hr ordeal for my daughter all covered up and the way this is done is to drug someone. We all know now so why cover things up? The other thing is they have taken her phone away and she has been without a phone for days at Enfield. Cygnet’s Policy is no phones at Sevenoaks but this was not the case at Cygnet Stevenage or Beckton. I am very concerned and I think that the CQC need call at Cygnet Sevenoaks to interview Elizabeth and check she is OK after her ordeal under BARNET ENFIELD AND HARINGEY MH TRUST. Whilst talking about Barnet Enfield and Haringey MH Trust I would point out they have two male wards and only 1 female ward – the other ward is mixed and they wanted to put Elizabeth on mixed Dorset Ward whose RC is Dr Greenside. This had already been tried before but Elizabeth reacted in terror – they all know this! – how can you put someone who is terrified of men on a mixed ward without any due consideration and why is there no other ward for solely females? If she had intensive trauma therapy in the first place she would not have gone downhill.

Due to lockdown since her admission we have not seen anything of Elizabeth as no visitors are allowed on wards however in light of lockdown special allowances should surely be made to let patients have access to their phones. I will be speaking to Cygnet Sevenoaks tomorrow about this. In terms of privacy and dignity special allowances should be made. These PICU settings can be very noisy and volatile and all they did at the previous PICU was forcibly drug her by depot (Paliperidone) metabolite of Risperidone previously found to be allergic to. They all knew this at Barnet Enfield and Haringey MH Trust and the RC of Suffolk Ward had indicated this fact on a drugs chart she signed previously.

ending my daughter a fair distance away is nothing new to Enfield as they have sent her all the way to Wales and worked together to restrict contact between myself and Elizabeth. It is cruelty and brutal punishment, not care and the environment is totally wrong. My blog Meds at Cygnet shows that disregard is been given to a patient’s well being and I am in touch with parents and relatives affected and know of those whose relative has died under Cygnet.

This expensive facility is all being paid for by the NHS and funded by Enfield Commissioning CCG as far as I know and I will find out the exact cost but it is bound to be at least £10000 per week? – correct me if I am wrong. Some people end up in facilities for life like this but Elizabeth has family and she has a flat and bearing in mind the review on this branch of Cygnet close scrutiny will be given I hope. I telephoned Cygnet today as I found out about the move third party – a nurse called Ade had phoned me on my old telephone number as they had not updated their records.

I presume this expensive facility is being paid for by:

NORTH EAST LONDON COMMISSIONING SUPPORT UNIT OR ENFIELD CCG?

I thought the NHS was short of money but it doesn’t appear to be the case. When a patient is sent away from out of area the local team are well and truly involved. I can prove it. Elizabeth is under the local team of BEHMHTNHS who are in close liaison with CYGNET CASTLE WARD and as Dr Sarker told me he was being guided by ENFIELD.

Elizabeth is being sent away for rapid tranquilisation and forced drugging second time in a short space of time by ENFIELD. ST PANCREAS HOSPITAL PICU RC DR NEIL SARKER drugged her with Paliperidone, contraindicated to her physical health conditions. So why send her so far away to a very expensive private hospital Cygnet Sevenoaks, Kent and how much is this costing. Perhaps Jinjer Kandola (CEO) will have the answers to this question and especially as to how much this is costing Enfield and why there are no decent facilities for someone who has been so badly abused and traumatised for people like my daughter.

https://www.cygnethealth.co.uk › locations › cygnet-hospital-godden-green

Cygnet Hospital Godden Green to open new PICU service for women. Castle Ward, our new 12 bed female PICU service at Cygnet Hospital Godden Green near Sevenoaks in Kent, is due to open on Monday 4th November 2019.

  • Location: Godden Green, Sevenoaks, Kent, TN15 0JR
  • Godden Green, Sevenoaks TN15 0JR · 01732 763491

 Cygnet Hospital Godden Green – Castle Ward – Specialist PICU Service for Women

Written by a member of staff14th September 2019

The nursing staff, (including ward managers and team leaders) MDT, Kitchen, Maintenance and doctors here are utterly wonderful, kind heroes. I had the pleasure of working with them. However they are sorely let down by the senior management (clinical/hospital manager and above). Cygnet is clearly more interested in profits than care. They treat their staff like dirt under their feet and take our their stress and anger on them. The CEO turned up to visit in a Ferrari! Well done care staff. Keep going. You guys are incredible.Recommend.

 Written by a carer21st November 2017

My child was drugged up to the eyeballs. After discharge, CAMHS were shocked at the amount of medication my child had been prescribed. I questioned the doctor during my child’s stay but was fobbed off; after all the professionals know what they are doing… My child did not engage much in the therapy offered and was not encouraged to. My child self harmed during stay, should have had stitches but was just given steri-strips. My child was there as an NHS patient, maybe if we were private my child would had had better treatment. Having said that, nurse Alice was lovely. There have been cases of theft; could only have been staff. Lack of communication- I always had to phone for information and updates.

Castle Ward – Specialist PICU Service for Women

Castle Ward is our new 12 bed female PICU service at Cygnet Hospital Godden Green and accepts emergency and crisis admissions. Referrals are accepted from all areas, including acute and prison services.

Our aim is a short, rapid intervention to help service users regain a sense of control and order in their lives, so they can move to a less restrictive care setting and ultimately return home.

The service will provide expert, intensive, short-term, individualised care for women detained under the Mental Health Act. Service users will present with increased risks that require them to be assessed and treated in a PICU environment.

Our service user profile:

  • Women, aged 18+
  • Detained under the Mental Health Act
  • Experiencing difficulties that present a risk to the well-being of themselves or others that cannot be treated in an open environment
  • Diagnoses may include:
    • Acute mental illness
    • Acute depressive illness
    • Psychosis
    • Schizophrenia
    • Bi-polar disorder
    • Personality disorder
    • Dual diagnosis
  • May present with co-morbid presentations:
    • Self-harm
    • Substance misuse issues
    • Complex needs

Sevenoaks Cygnet Hospital rated good after ‘care concerns’

  • 8 May 2018
Cygnet Hospital
Image captionThe CQC said significant but necessary improvements had been made

A mental health hospital in Kent that was criticised about its care standards has been rated as “good”.

The Care Quality Commission (CQC) inspected Cygnet Hospital amid concerns over ward environments and incidents affecting patients’ welfare.

Inspectors said the NHS provider in Sevenoaks had made significant changes.

Cygnet Health Care said it had taken “all necessary steps” to allay concerns raised and the wellbeing of people using its services was “top priority”.

In February, Anya Auckland, 17, criticised the care she received at the hospital in Godden Green.

Natasha Sloman, from the CQC, said concerns were raised over the ward environments, the number and severity of incidents affecting the health, safety and welfare of patients in children and adolescent mental health wards and a failure to report incidents to external bodies.

Anya Auckland
Image captionAnya Auckland said she was ignored and not supported

She said: “Cygnet Hospital has worked hard to make the significant but necessary improvements required to ensure the safety and well-being of its patients, including changes to the management.”

Nicky McLeod, Cygnet’s chief operating officer, said: “We have taken all necessary steps to allay previous concerns raised, including implementing extensive learning development programmes for all staff and establishing a specialist management team.”

She said Cygnet would continue to work collaboratively with the CQC and NHS.

‘Disgusting’ treatment at Kent mental health service

  • 19 February 2018
Anya Auckland
Image captionAnya Auckland said she was ignored and not supported

A 17-year-old mental health patient has described the care she received at a Kent hospital as “disgusting”.

Inspectors recently criticised the Cygnet Hospital in Sevenoaks, and issued three warning notices.

Anya Auckland was admitted last year and said patients aged between 12 and 18 were secluded, sometimes for weeks, to “control” them.

The head of Cygnet Health Care said they are looking at ways to “improve procedures, protocols and training”.

‘Worthless’

The Care Quality Commission (CQC) carried out an urgent inspection after concerns were raised over the safety of young people.

Inspectors found patients were not protected against abuse and “seclusion and segregation was used to control and contain young people in the absence of other behaviour-based approaches”.

Miss Auckland was admitted after feeling suicidal, but said staff made her feel “worthless”.

She recalled seeing a patient “dragged along the floor” because they were in the wrong corridor.

Cygnet Hospital in Sevenoaks
Image captionConcerns were raised over Cygnet Hospital in Sevenoaks

She added: “One time a girl was in seclusion in a room for one or two weeks.

“Once she was out, we were playing outside… The ward manager came out and said to her, ‘you’d better stop or you’re going to go back to where you belong’.

“You’re stuck in this world, which makes everything much more intense. When your words aren’t being taken into account, you work together.

“The most support I had was from other patients.”

Nicky McLeod, chief operating officer at Cygnet Health Care said: “We recognise we have not always dealt with issues raised around the care we offer as comprehensively as we might.

“But as a responsible mental healthcare provider we take any comments on our hospitals very seriously.”

Ms Auckland met with the new manager of the centre and director of nursing to give feedback, and the service is being re-inspected to check progress.

.0Team and EnvironmentStaff Nurse (Former Employee) – Sevenoaks, Kent – 3 May 2020Chaotic,disorganised, and not particularly friendly.
The staff employed are often those with extraordinarily little to no experienced taken on by those already working at the facility.
This is true of agency healthcare assistant – some may never have worked in such environment but is more often taken on because of who they know.
You are left very much to do a lot by yourself with those who are supposed to support having very little themselves to no experience in dealing with a crisis and is often finding excuses to do something else leaving you to carry the burden if mistakes are made.
The most enjoyable part of the job is when it is time to leave the premises, when you have finally finished certain aspect of the work that those scream at you, putting pressure on you to do the things that they themselves can do when it should be a shared experience.Pros Free lunch, either for the lunch time or evening, not twice a day when on duty. Cons You don’t exactly use the skills you begin the job with, and you never finish work on time. Was this review helpful?YesNoReportShareOfficial response from Cygnet Health Care7 May 2020Hi,
Sorry to hear about your poor experience with us recently, but thank you for providing detailed feedback.
Obviously, we’re keen to improve on any failings – could we speak to you, in confidence, to find out more details?
If could you send your contact details to review@cygnethealth.co.uk<mailto:review@cygnethealth.co.uk> – we will get back to you ASAPOfficial response from Cygnet Health Care7 May 2020Hi,
Sorry to hear about your poor experience with us recently, but thank you for providing detailed feedback.
Obviously, we’re keen to improve on any failings – could we speak to you, in confidence, to find out more details?
If could you send your contact details to review@cygnethealth.co.uk<mailto:review@cygnethealth.co.uk> – we will get back to you ASAP
Thanks for the positive feedback, really appreciated.Official response from Cygnet Health Care7 May 2020Hi,
Sorry to hear about your poor experience with us recently, but thank you for providing detailed feedback.
Obviously, we’re keen to improve on any failings – could we speak to you, in confidence, to find out more details?
If could you send your contact details to review@cygnethealth.co.uk<mailto:review@cygnethealth.co.uk> – we will get back to you ASAP
Thanks for the positive feedback, really appreciated.2.0

Poor ManagementSENIOR PROCUREMENT OFFICER (Former

Employee) – Sevenoaks – 8 November 2019

Management with no people skills or ability to Communicate and Manage staff properly.
Management that was given a position over a pint.
And many other issues they lack of as an organisation.
If they change those individuals, would be ok place to workWas this review helpful?Yes8NoReportShareOfficial response from Cygnet Health Care18 November 2019Hi,
Sorry to hear about your recent experience with us but thank you for providing feedback.
Obviously, we’re keen to improve on any failings – could we speak to you, in confidence, to find out more details?
If could you send your contact details to review@cygnethealth.co.uk – we will get back to you ASAP2.0

Management do not value their staffHCA/Support Worker (Former Employee) – Sevenoaks, Kent – 4 September 2019

Not a place to work if you want to progress further skills as a HCA
Only recognise nursing
No recognition for their hard working staff. And low moral within staff throughout the hospital which has an impact on young person’s progressWas this review helpful?Yes15NoReportShareOfficial response from Cygnet Health Care6 September 2019Hi,
Sorry to hear about your experience with us recently but thank you for providing feedback.
Obviously, we’re keen to improve on any failings – could we speak to you, in confidence, to find out more details?
If could you send your contact details to review@cygnethealth.co.uk – we will get back to you ASAP4.0

Last night I participated in an interesting Zoom discussion organised by http://www.bringingustogether.org.uk.

I, along with other parents with relatives locked away under the UK’s cruel, abusive system took part and had the opportunity to voice our opinions and discuss openly, all of which will be put forward to NHS England.

“Bringing Us Together is an independent and proactive voice for families. We are quick to listen and respond to the needs of our family members through our forums, web chats, resources, news and blog items on topics that we know are important. Our projects aim to move things on and change attitudes by highlighting concerns, show what good looks like, and raise awareness of important topics. We work together with family members, professionals and other parent led organisations to drive up quality and standards by addressing the real issues and barriers impacting our families. We are passionate about making the world a place where our young people are loved, respected, have an equal voice, rights, and opportunities. We want all our young people to grow up feeling strong, happy with their relationships with family and friends, positive about themselves and part of their communities. We actively encourage everyone to become a member so they can share details of events, consultations, surveys, news and resources in our forums. Only registered members can see all of these forums.”

It awaits to be seen if NHS England will take note and most importantly act upon this discussion.

Ray James: My priorities as NHS learning disabilities director

https://www.themj.co.uk › Ray-James-My-priorities-as-NHS-learning…

17/04/2018 · Ray James: My priorities as NHS learning disabilities director By Ray James | 17 April 2018 We all share a desire to help people with learning disabilities or autism to live the lives of their choosing in their local community and, at the same time, to reduce the use of in-patient settings.

I remember Mr James whilst at Enfield when Elizabeth had been dreadfully abused under her scheme. I had tried to get her referred to Integrated Learning instead of mental health who had tried to cover up extensive abuse suffered under Moti Villa, The Ridgeway, Enfield.

No-one took a blind bit of notice. An AMHP later appointed as “nominal NR” stated Elizabeth’s constant hospital admissions were “because of her mother” – however her mother did a thorough investigation to reveal the extent of abuse, joined the police and revealed what was really going on under that scheme, situated in one of the best areas of Enfield. Then you turn to those at the top, such as Mr James whose PA dismissed everything like rubbish in a desperate attempt to cover things up. File notes confirm conditions in Elizabeth’s flat were sub-standard, in breach of health and safety, yet social services will never confirm this to your face. Mouldy food, bins overflowing and I took photos to prove it. How can anyone function on this c800 mg Quetiapine, an enormous quantity of drugs in the community?

The reality was she was trying to avoid drug dealing on the premises – A 14 year old child drug dealer and crack cocaine was being supplied. Elizabeth was afraid of the drug dealers, as demonstrated by her behaviour so was constantly admitted to Chase Farm Hospital where she felt safe. However this was no safe place as Psychiatrists raised Quetiapine to 800mg together with other drugs. All the time Elizabeth was suffering from PTSD due to multiple abuse – CCTV went missing and so did all her possessions. MOTI VILLA – was that scheme.

Anyway, last night’s discussion was very good and great to get things brought out in the open. Sadly I am far from alone as a parent who is extremely concerned by the “treatment” given to their relative in the name of “care” leading to decline and injury. I was not the only one to mention over-prescribing but who listens to a parent? However I have sought advice on the drugs from leading professors backed by research and even then Doctors do not listen. If Doctors are continually allowed to prescribe away without due recognition of prescribing guidelines and contraindications to vulnerable patients then they should be held accountable but instead parents are having to fight for justice at inquests. This is pure evil what is allowed to go on in the UK to so many. This matter concerns me more than Covid 19.

Some parents who took part yesterday commented they were afraid to speak out for fear of what might happen to their sons/daughters under care if they did. However I take a very different view because when a doctor knowingly prescribes a drug previously found to be allergic to and one that is contraindicated, especially in light of Paula McGowan’s son Oliver, then this needs to be brought to everyone’s attention and openness and honesty is the way forward. I spoke about open dialogue last night and also my concerns on prescribing and in general how it feels to have someone locked away, not allowed to see that person or have any contact and no-one communicates effectively then you find out about incidents, some serious and that patients are not allowed fresh air for several days and things have gone missing so no-one bothers to ring, you are treated like nothing as a parent/carer – it is as though you do not exist.

I remember once a church service I attended at Mary Mother of God”, Ponders End where the Priest would talk of every day life situations in relation to God’s words. I will never forget his mention of speaking out openly and honestly against evil and not remaining silent or going along with things that are wrong and against God but this is happening all the time under mental health care of the UK, where staff are ordered by the RC and allowed by UK law to forcibly restrain and drug vulnerable people, such as Elizabeth who have been badly abused under the care of the local area which in this case is ENFIELD. There is plenty abuse going on in the UK which is against God under a mental health system not fit for purposes and in care homes, hospital settings and supported living. This abuse and cruelty goes on behind closed doors by unaccountable professionals and under lockdown even more control and deprival of liberty by a Government who have no idea and compassion.

I greatly sympathise with the mass protests in respect of George Floyd who suffered brutal treatment in the US. However it is not just the Police who give such treatment. In Elizabeth’s case it has not been the Police of the UK at all but professionals under mental health care who forcibly drug and restrain a patient face down – they are just doing their job and obeying orders from the RC but what they are doing is against God. There is also racism so I’ve noticed judging by the ranks of those employed from cleaners to the very top with two white psychiatrists/RCs presiding over them giving the orders that everyone has to obey or else lose their jobs or be threatened with bullying but what they are doing is wrong. Then you look to the very top o with the likes of Boris Johnson who I have previously written to about MH care and this shows how little they care. They allow abusive practices to go on under the law. Nothing has been done to enforce NICE Guidelines, with drugs prescribed at dangerously high levels leading to death and injury, with patients being used as human guinea pigs and experimented on. In Elizabeth’s case the Doctor knew full well that the drug Risperidone was previously recorded as being allergic to and has even signed a drugs chart to this effect.

I would also describe my daughter’s treatment at North Mid Hospital as degrading but the shocking thing is that had she died as a result, there would be no crowds, no demonstrations – nothing. Imagine being held down face down by several so called professionals who possess no communication qualities for a quick solution and use this abusive tactic allowed under UK law. Employees of all races/ethnic cultures are just doing their job but if someone dies then no-one wishes to be accountable and they cover everything up. In the next room Elizabeth could hear staff talking about resuscitation – face down restraint can be life threatening and the treatment brutal – these people are carrying out their orders from those at the top. When you look further you can see who is responsible and that is a Government whose leader Boris Johnson, Health Secretary Matt Johnson and others who sit back and allow for such abuse. The Government go on and on about Covid 19. Abuse under MH and LD being covered up because people have their eyes shut due to Covid 19 and abusive cruel treatment of those with LD, MH and autism if rife and something needs to be done about this urgently.

I have not seen Elizabeth for weeks on end and I am not alone. Many parents spoke of their distress regarding this.

Yesterday I phoned Suffolk Ward, so did other family members but none of us could not get through. Apparently Elizabeth was held in seclusion and her phone taken away. Noone was keen to speak no doubt fearful for their jobs and claimed to be bank staff with noone present on the ward other than bank staff last night.

I’m going up to Chase Farm today as I have given information to the RC on Professor Philip McGuire’s research at Kings College London on Medical Cannabis as well as research papers regarding the links below. No comment regarding this. I would not be sitting here writing this if I as a mother had at least been listened to and communicated with effectively. It is all to easy to push someone aside because it is too much effort to communicate with that person who might have a very valid concern. The way they speak to you over the phone is not good. You are spoken down to and dealt with in an evasive manner, staff keen not to disclose any information to you.

Here is some information and this shows that some Doctors show consideration to their patients – there has been promising results with the research of Professor Philip McGuire and this should not be dismissed by NICE.

  1. Access Medical Cannabis in the UK | Cannabis Access Clinicshttps://cannabisaccessclinics.co.ukThe Clinic Cannabis Access Clinics provides UK patients with access to specialist doctors with experience prescribing cannabis based products (also known as medical marijuana). Cannabis Access Clinics are focussed on helping doctors and patients navigate the regulatory pathway for prescribing medicinal cannabis products in the U.K.
  1. https://academic.oup.com/eurheartj/article/35/20/1306/2293020

Finally, I’ve just received a standard letter from Dept of Health all about Covid 19 and shielding which I have not been doing from the very beginning. Elizabeth was dumped into the community by Suffolk Ward without any care provided whatsoever so I was helping her from the start. Besides I am not afraid of Covid 19 neither do I trust mainstream news.

As for risk! I am more likely to suffer a heart attack because of the lack of decent humane care being given to my daughter and the reality of how past “care” and “treatment” has damaged her beyond recognition. So it says from 1 June shielding guidance slightly relaxed and they suggest you may wish to spend some time outdoors away from your home once a day. Here is what I think RUBBISH! some of us have been unable to do what the Government orders because of caring responsibility and lack of any provision. Now suddenly the Government are relaxing their decisions. Mention was of food boxes but whilst I was thrilled to received a call about this as I have never been offered any support under Enfield before so I offered my services to deliver the food parcels but never heard anything more as how could I shield when I had Elizabeth in need to help not provided. I see that the food parcels and medicine deliveries will be continued until end of July but because I have been going out shopping etc for Elizabeth this is something I have not received. During the time of shielding I had taken Elizabeth to the Chiropodist for an emergency appointment as she was in a lot of pain and I was helping her in general but no support of the kind needed to those who are carers.

The last paragraph of the standard letter states “it is normal during these uncertain and unusual times to feel anxious and low. Well that does not apply to me as I am far more concerned about the prescribing and injury caused to vulnerable people under MH/LD. The people shielding does affect are vulnerable people like Elizabeth who wanted an MRI scan and was upset when this could not be done and I was looking to pay for it privately then she got admitted and had again turned to phoning Police desperate for conselling and support not given by Enfield Community Treatment Team.

Elizabeth was discharged from hospital prior to the Covid crisis, but had no support in the community. She is now back on Section 3 which in the UK is for treatment of antipsychotic drugs, when she needed support in the community. So many others are in a similar situation because of lack of community care.

Treatment in the past has been Prozac, Risperidone (found to be allergic to), Aripiprazole, Olanzapine at max dosage, Quetiapine plus Haloperidal, Zopical, Lorazepam, Clonazepam, Promazine. When the drugs failed to work Doctors optimized the dosage. That didn’t work either. I then had the P450 liver enzyme which proved she was a poor/non metaboliser. Diagnosis states Aspergers/developmental and Learning disability and complex PTSD but Doctors under Enfield stick with paranoid schizophrenia which we dispute.

Doctors now wish to start depot injections and I am concerned because the drug they wish to inject Elizabeth has previously been found to be allergic to. I feel they should make referrals to experts in the field of Endocrinology and Neurology for necessary scans before treatment goes ahead. For the past month or so Elizabeth has been in seclusion for several days due to shortage of beds then sent to St Pancreas Hospital Ruby Ward where she was forcibly injected with Paliperidol twice. Bearing in mind during titration of Clozapine in 2012 she scored a Mews Score of 3 (critical) and developed tachycardia I feel that what they are about to do is very wrong. Under mental health law of the UK vulnerable people, (inc. LD, autistic) regardless of race can be treated brutally treated, pinned down with face down restraints like George Floyd and injected/restrained by as many as 6 members of staff and no one cares if they die. It is covered up and there is a wall of silence. Families have to fight for justice. These vulnerable people can be locked away, fed through hatches and denied contact with their families. Coercion and gaslighting is rife. Bullying can also be extended to the family if they dare to challenge. Then reports are written behind the vulnerable person’s back making them and their families look bad. At the Royal Bethlem Hospital that is supposed to be world-wide renowned, not one ECG machine was working and Elizabeth was critically ill. I sent an email yesterday along the following lines:

“I am not against treatment but feel that when there are risks of death, in light of evidence attached within the files, Elizabeth needs to be thoroughly assessed first by referrals to specialists such as Neurologists for MRI scans and ultrasound/ Endocrinologist to check on organic pathology.   In Dr A-B’s report it says “kindly exclude any organic pathology” but this should now be included and thoroughly looked into due to past allergies. After all, adverse reaction could lead to death. 

I therefore wondered if you could consider a safer alternative that the whole family would support in terms of treatment in her case where the Bethlem identified her as being “treatment resistant”.    It is Professor Phillip McGuire who is the top person for research on cannabis oil and psychosis based at King’s College London   https://kclpure.kcl.ac.uk/portal/philip.mcguire.html  “CBD could be “new class of treatment” for psychosis.  King’s College London researchers found that CBD could hold promise as a treatment for psychosis, according to reasonable benefits seen in a clinical trial. 

Please can Elizabeth be referred to Professor Philip McGuire (Institute of Psychiatry, Psychology and Neuroscience).  Please can Elizabeth be involved in the research.

https://www.kcl.ac.uk/academic-psychiatry/about/departments/psychosis

https://www.openaccessgovernment.org/treatment-for-psychosis/64091/.&#8221;

  Read More

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.

 

 

 

 

 

 

 

 

 

 

 

 

%d bloggers like this: