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.
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.
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.
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:
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
- a high prolactin level
- excessive fat in the blood
- low amount of magnesium in the blood
- low amount of potassium in the blood
- 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
- 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
- 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
- a prolonged erection of the penis
- weight gain
- susceptible to breathing fluid into lungs
- 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
- “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.
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
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.
- 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.