I have not written a blog for a long time as I have been concentrating on my forthcoming book but recent events have led me to write the above blog which I will be adding to.
When you reach the end of a complaint which has gone nowhere you get labelled:
Elizabeth was discharged from Chase Farm Hospital on the 28 May and was discharged without a Discharge Note or care plan in place to my knowledge. The Discharge Note detailed only physical health concerns.
I was pleased that she had been discharged from Chase Farm Hospital and became a full time carer as once again the Community MH team had failed to support in any way apart from administering a depot which made Elizabeth suffer so much before and after administering because she had developed a fear of needles.
So the depot was being reduced and titrated down to nothing and every six weeks a review was given.
The complaint with the PHSO to address the brutal treatment of my daughter under NHS care was largely on hold because of Covid and had been for some time. Suddenly an “investigator” contacted me under Ref C-2006177. Caseworker LM responded stating in his email dated 25 June 2021 that the discharge note had been added to the case file “we have everything we need from you at this stage”. “As previously advised, please note that in order to consider your complaint further we would need to see evidence your complaint has been fully investigated by the Trust and all points raised have been addressed”.
I think I gave more than enough evidence that things had not been fully investigated and how could they possibly have been when this went right to the very top and noone responded to the complaint despite Teams Meeting with Pals and Chief Nurse nothing was resolved because my complaint involved letters I had received as well as disturbing things that had happened to Elizabeth on the ward. Nothing was dealt with once again.
“If you have any questions please contact us quoting your unique reference number that has been assigned to you ie C-2006177.”
When you are labelled a vexatious complainant who can you turn to especially if those named such as Pals and a manager of social services do not respond? Was it justified that those at the very top of the Trust wrote such a letter accusing me in the way they did and was it justified that no response was given to the MP from the very top of the Trust. This has all been done before but this time the PHSO were not so dismissive.
Anyway a new case worker was appointed namely ZH. She has sent various correspondence and refused to send a written response to explain why the complaint had been disregarded. However she pointed me in the direction of the Local Government Ombudsman and the Police. This is just passing the buck and dismissing a year of the most disturbing abuse to my vulnerable daughter under NHS care. It is integrated care in Enfield so why not involve LG Ombudsman jointly? Instead I was told the complaint was nothing to do with them but the LG Ombudsman so I have today contacted the LG Ombudsman and I believe Nigel Ellis is the CEO. I printed off a form and completed it with my new address on. Yes, I have moved away from London where I have lived all my life because it became so unbearable.
Here are just some of the extracts from my complaint in an email sent to previous investigator LM:
Every complaint avenue has been exhausted – there were only two avenues of complaint and got nowhere either through non response or ignoring the concerns even when a Teams meeting was called.
Being labelled “vexatious” is just a means of silencing someone and making it difficult to voice valid concerns.
Discharged in such a state she could hardly walk and her breathing sounded terrible even picked up on my her former CC. Elizabeth relied on me for everything and every day I would visit her independent flat to help her in every way in the absence of a scrap of care being put in place. She could not even use her bath – she was around a size 24 from being held prisoner on a ward amber categorised where for some time following Xmas no fresh air or exercise allowed. This meant that the bath was totally inadequate for her and no measures had been put in place before discharge to tackle this despite there being ample time so the first thing I did was to try to help but between 28 May and 15 September absolutely nothing done about this and this was a risk factor under health and hygiene surely. This shows no communication or care from professionals under the NHS and LA – that is if the CMHT come under LA when they have NHS email addresses.
Most of the complaint was to do with NHS care and treatment on the ward and there was great confusion in ZH stating this had nothing to do with the PHSO when the NHS were the providing body of all care over the past year.
I used to go round to the flat to cook, clean, go shopping, buy food and other provisions, help with benefits, nursing care, try to persuade her to come round to the house for a shower. There was nothing provided. The GP was suddenly taking matters seriously with regard to her physical health because on the discharge note it was mentioned “abnormal findings on scan relating to CNS” – What is this exactly? Noone could give me an answer when I had questioned which CNS condition did Elizabeth have or is this pointing to injury?
This is not private care provided by myself but funded by local Commissioners with the involvement of the local team who quickly recalled Elizabeth from one OOA institution when an autism assessment was offered by a specialist there.
The care she has had is fit for a Panorama programme in my opinion.
So having been dismissed like rubbish I have been advised that the entire matter is nothing to do with the PHSO but the LG Ombudsman and Police.
I will be adding to this blog in due course once I have the LG Ombudsman’s response because no I do not think this matter comes solely under the LG Ombudsman but jointly.
We have had to move away from an area where we have lived all our life to a new area where we know noone and there have been enormous problems but first of all before I write about everything I must give the LG Ombudsman the chance to look into the dismissal of the PHSO investigators.
I have been impressed in the past the way the LG Ombudsman dealt with a safeguarding issue where I managed to obtain the minutes so let’s see what they have to say about this whole matter and who is responsible.
No way should any complaint be dismissed like rubbish with no accountability and trying to pass the buck and this is how I feel we have been treated by the PHSO.
The complaint will now be sent to LG Ombudsman according to the advice of ZH and her Manager. I will inform you all of their response but I always thought that in areas where there is supposed to be integrated care then with NHS email addresses does this not come under NHS now? In other words who is actually responsible?
In blue I have highlighted the side effects Elizabeth is experiencing on the above drug which was prescribed at maximum level of 400mg now reduced to a still high dosage of 300mg. Below is taken from BNF Guidelines, link of which was sent to me when I contacted NICE recently to find out their recommendations on the withdrawal of the above depot. It is horrifying to note that NICE do not have any recommendations. The depot is being withdrawn by 50mg at a time following a review at every six weeks by ENFIELD COMMUNITY REHAB TEAM whose RC is Dr Ilyas Mirza. Elizabeth has just had a review from Dr Ahmad from the Community MH Team resulting in the reduction of 50mg bringing it down to 300mg. It is shocking to see so many terrible side effects that my daughter is suffering right now on this prescription but because of the fact that this is contraindicated to CNS she is having to go through agonising pain of withdrawal without any support and then all she wants is to be left alone as she recognises that she has been abused – she sees the depot as abuse. The question needs to be asked as to why she was ever put on it in the first place when although she took herself off Risperidone in one go cold turkey she was suffering terrible side effects on this and just look what Risperidone and Paliperidone causes in cases of autism which Elizabeth (not me) recognises as being HER condition. We await to hear the verdict from the Maudsley on diagnosis but one thing is for sure they can no longer pin the unscientific label of “paranoid schizophrenia” on my daughter and I await answers to my query on what is the correct diagnosis and I am not going to allow anything or anybody to cover this up.
I last spoke to Beatrice Awudu who completed the Discharge Note stating only physical conditions and I was told to contact Runa Bhoobun next but the question needs to be asked as to why this Discharge Notice did not come from Suffolk Ward itself rather than from the Home Treatment Team nurses. It is no wonder why my daughter does not feel well right now with this prescription in mind.
Indications and dose
Schizophrenia and other psychoses
By mouth Unfortunately the guidance needed is on the depot
For Adult Initially 20–30 mg daily in divided doses, increased if necessary up to 150 mg daily; usual maintenance 20–50 mg daily (max. per dose 40 mg), for debilitated patients, use elderly dose.
For Elderly Initially 5–15 mg daily in divided doses, increased if necessary up to 150 mg daily; usual maintenance 20–50 mg daily (max. per dose 40 mg).
Apathetic states; CNS depression; comatose states; phaeochromocytoma; withdrawn states Yes this explains why Elizabeth is being taken off it.
For all ANTIPSYCHOTIC DRUGS
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 This is not looking good as it would appear that certain doctors have ruined my daughter’s physical health by their enormous prescriptions of antipsychotic drugs without a second thought to not doing harm to the patient.
Cautions, further information
An ECG may be required, particularly if physical examination identifies cardiovascular risk factors, personal history of cardiovascular disease, or if the patient is being admitted as an inpatient. AWAITED – Appointment recently cancelled by Inhealth private clinic referred to by NHS due to covid.
for all antipsychotics (other than quetiapine and clozapine) in patients with parkinsonism or Lewy Body Disease (risk of severe extrapyramidal symptoms)
in behavioural and psychological symptoms of dementia (BPSD), unless symptoms are severe and other non-pharmacological treatments have failed (increased risk of stroke) I cannot understand whyquetiapine and clozapine are in brackets. Quetiapine caused Akathisia and Clozapine NMS, and other extrapyramidal symptoms.
for use as a hypnotic, unless sleep disorder is due to psychosis or dementia (risk of confusion, hypotension, extrapyramidal side-effects and falls)
in patients prone to falls (may cause gait dyspraxia, parkinsonism)
if prescribed a phenothiazine (other than prochlorperazine for nausea, vomiting or vertigo; chlorpromazine for relief of persistent hiccups; levomepromazine as an antiemetic in palliative care) as first-line treatment (sedative, significant antimuscarinic (anticholinergic) toxicity in older people, and safer and more efficacious alternatives exist)—
if prescribed an antipsychotic drug with moderate or marked antimuscarinic effects (e.g. chlorpromazine, clozapine, flupenthixol, fluphenazine, pipothiazine, promazine and zuclopenthixol) in patients with a history of prostatism or urinary retention (high risk of urinary retention).
Agranulocytosis; confusion; embolism and thrombosis; neuroleptic malignant syndrome (discontinue—potentially fatal) Already had that on Clozapine which is why I took her off it.
Rare or very rare
Sudden death; withdrawal syndrome neonatal
Side-effects, further information
For depot antipsychotics—side-effects may persist until the drug has been cleared from its depot site.
Phenothiazines cause less depression of consciousness and respiration than other sedatives. Hypotension, hypothermia, sinus tachycardia, and arrhythmias may complicate poisoning. For details on the management of poisoning see Antipsychotics under Emergency treatment of poisoning.
Extrapyramidal effects and withdrawal syndrome have been reported occasionally in the neonate when antipsychotic drugs are taken during the third trimester of pregnancy. Following maternal use of antipsychotic drugs in the third trimester, neonates should be monitored for symptoms including agitation, hypertonia, hypotonia, tremor, drowsiness, feeding problems, and respiratory distress.
For all ANTIPSYCHOTIC DRUGS
There is limited information available on the short- and long-term effects of antipsychotic drugs on the breast-fed infant. Animal studies indicate possible adverse effects of antipsychotic medicines on the developing nervous system. Chronic treatment with antipsychotic drugs whilst breast-feeding should be avoided unless absolutely necessary. Phenothiazine derivatives are sometimes used in breast-feeding women for short-term treatment of nausea and vomiting.
Manufacturer advises caution—monitor serum drug concentration.
Manufacturer advises dose reduction of half the recommended dose.
Halve dose in renal failure; smaller starting doses used in severe renal impairment because of increased cerebral sensitivity.
For all ANTIPSYCHOTIC DRUGS
Monitoring of patient parameters
It is advisable to monitor prolactin concentration at the start of therapy, at 6 months, and then yearly. Patients taking antipsychotic drugs not normally associated with symptomatic hyperprolactinaemia should be considered for prolactin monitoring if they show symptoms of hyperprolactinaemia (such as breast enlargement and galactorrhoea).
Patients with schizophrenia should have physical health monitoring (including cardiovascular disease risk assessment) at least once per year.
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.
For all ANTIPSYCHOTIC DRUGS
There is a high risk of relapse if medication is stopped after 1–2 years. Withdrawal of antipsychotic drugs after long-term therapy should always be gradual and closely monitored to avoid the 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.
Prescribing and dispensing information
For all ANTIPSYCHOTIC DRUGS
Patient decision aid
Antipsychotic medicines for treating agitation, aggression and distress in people living with dementia. National Institute for Health and Care Excellence. June 2018.
For the NHS to take someone off psychiatric medication this means that something they have discovered is wrong. The Drug Paliperidone was prescribed at the following hospitals:
Chase Farm Hospital Enfield
St Pancreas Hospital Ruby Ward
Cygnet Godden Green
Elysium Thornford Park
The Discharge Note points to CNS and all physical health but and no-one wishes to say what it is. The GP Surgery said they were told it was a mistake by Admininistration staff however we know this to be a lie. When I have confronted professionals to say that what they were doing was wrong the response has been one of arrogance. When I called at Chase Farm Hospital’s Foyer and complained that no-one could get through to Elizabeth and that we as a family were concerned. I was shown into an office on ground floor by SE with two others present.
When I complained about the medication Paliperidone (Risperidone Depot) previously found to be allergic to the response from AB was “Are you a Doctor or Nurse?” to which I replied “no” – I am just a mother. Her response then was “I went to University and I have a degree in nursing”. In other words you as a parent/carer are seen as nothing – your concerns are dismissed in that how could a parent/carer have a clue about the prescribed drugs. So I then stated that I had 5/6 drugs charts to indicate allergy to Risperidone. The RC told Elizabeth that “Risperidone is not Paliperidone” however I turned to leading experts for advice on the drugs/drug metabolism.
In conclusion, catatonia could be observed several weeks after titration to a therapeutic dose of paliperidone in a patient without other psychiatric or medical comorbidity. Prompt discontinuation of the implicated drug and giving benzodiazepines are beneficial in patients presenting with catatonic symptoms associated with antipsychotics.
Risperidone, an atypical antipsychotic, has been reported to induce catatonia in several patients, 1 4 Paliperidone, a major active metabolite of risperidone, was approved by the United States Food and Drug Administration (FDA) in December, 2006, for the treatment of schizophrenia.
Catatonia Associated with Initiating Paliperidone Treatment
Catatonia Associated with Initiating Paliperidone Treatment *Oregon Health & Science University, Department of Emergency Medicine, Oregon Poison Control Center, Portland VA Supervising Section Editor: Eric D. Isaacs, MD Submission history:
We present a case of catatonia, which occurred shortly after starting a new antipsychotic, paliperidone, an active metabolite of risperidone.
Catatonia may be caused by a variety of conditions, including metabolic, neurologic, psychiatric and toxic processes.
Interestingly, risperidone, which has been thought to cause several cases of catatonia, has also been recommended as a potential treatment.
We discuss potential mechanisms for causes of drug-induced catatonia as well as potential treatment options. [West J Emerg Med. 2010; 11(2):186-188.]
INTRODUCTION Catatonia can be caused by a variety of metabolic, neurologic, psychiatric, and toxic conditions. Risperidone, an atypical antipsychotic, has been reported to induce catatonia in several patients,1,2 although paradoxically, antipsychotics, including risperidone, have been used successfully to treat catatonia.3,4 Paliperidone, a major active metabolite of risperidone, was approved by the United States Food and Drug Administration (FDA) in December, 2006, for the treatment of schizophrenia.
We report what we believe is the first case of catatonia temporally related to paliperidone, after a single dose.
CASE REPORT An 84-year-old female with history of major depression and anxiety was evaluated by her psychiatrist for worsening anxiety and given a single dose of 3 mg of paliperidone. Eight hours later she became increasingly agitated and, according to her daughter, “looked like she was going to crawl out of her skin.” She then told her daughter “make it go away, make it go away,” and subsequently stopped speaking and responding to any physical or verbal stimuli, although she appeared awake and alert. She had no prior documented episodes of catatonia. Her daughter brought her into the local emergency department (ED). In the ED, she had a temperature of 37.3°C, pulse 80 beats per minute, blood pressure 161/72 mm Hg, respiratory rate 20 breaths per minute and oxygen saturation of 98% on room air. Her medications were citalopram, trazodone, levothyroxine, and paliperidone. She lived with her daughter, who related no recent trauma. The patient previously took risperidone, but it had been discontinued after several months because of mild akathisia, with both restlessness and tremor. Physical exam showed an alert, well appearing elderly female in no acute distress. Her pupils were equal round and reactive to light; she would not comply with extraocular muscle testing. She did open her mouth on request and stuck out her tongue midline; there was no erythema, and mucous membranes were moist. Cardiopulmonary exam was unremarkable; abdominal palpation did not cause any change in her facial expression and was soft without masses. While she complied with several requests for the cranial nerve exam she would not move her fingers or toes when asked, but was noted to turn her head in all directions and roll from side to side, moving all extremities equally. Her brachioradialis and achilles reflexes were equal and Babinski reflexes were downgoing. She exhibited stupor and mutism with fixed postures. Finger-stick glucose was 114 mg/dL. Intravenous diphenhydramine, 25 mg and benztropine, 0.5 mg were given for dystonia without any change. Noncontrast head computed tomography (CT) was performed due to concern for stroke and was unremarkable. Laboratory tests showed white blood cell count of 7.4 K/mm3 with 60% neutrophils, her hematocrit was 37.6%, and platelets were 203 K/mm3 . Electrolytes and renal function showed sodium 135 mmol/L, potassium 3.5 mmol/L, chloride 101 mmol/L, bicarbonate 20 mmol/L, calcium 9.8 mg/dL, blood urea nitrogen 12 mg/dL, and creatinine 1.0 mg/dL. Due to the lack of inpatient psychiatric beds, she was observed in the ED for 12 hours. Psychiatric consultation had no specific recommendations. Sixteen hours after the dose Western Journal of Emergency Medicine 187 Volume XI, no. 2 : May 2010 of paliperidone, without other therapy, she began to talk and interact. More detailed neurological exam showed no focal deficits. Her mood and affect were appropriate. She did not recall the events of the previous evening but remembered her daughter talking, although she was unable to respond. DISCUSSION
Catatonia is a neuropsychiatric syndrome characterized by a combination of mental, motor, vegetative, and behavioral signs and symptoms.
It has been described as a syndrome with prominent motor signs, with positivistic or excitatory symptoms, including mitgehen, in which there are excited movements with light stimulation, even with instructions to the contrary.
Other signs include stupor, immobility, mutism, and negativism, including gegenhalten (increasing resistance to passive movement of the limbs), waxy flexibility, posturing, stereotypic movements, echolalia, and echopraxia.6 Mutism and stupor are generally regarded as principal signs of catatonia, although neither are certainly pathognomonic.
The Diagnostic and Statistical Manual of Mental Disorders, DSM – IV, defines catatonia as the presence of at least two of the following: motoric immobility, excessive motor activity, extreme negativism/mutism, posturing/ stereotyped movements/prominent mannerisms or grimacing, and echolalia or echopraxia.6 Our patient exhibited several of these features, including immobility, with posturing at times, and extreme negativism, including mutism.
While her presenting differential was broad, lack of fever, headache, and a normal white count were inconsistent with infection. A lumbar puncture was not obtained, but complete reversal of symptoms without other therapy would also argue against meningitis or encephalitis. Non-convulsive status epilepticus or partial complex seizures should also be considered, although there was no history of a previous seizure disorder. An electroencephalogram (EEG) should be obtained if clinical suspicion warrants.
Catatonia has been associated with schizophrenia, major depressive disorder, as well as other medical conditions, including alcoholism, bi-frontal tumors, encephalitis, transient ischemic attack, chronic obstructive pulmonary disease, rheumatic heart disease, Alzheimer’s and vascular dementia, central diabetes insipidus, closed head injury, end stage renal disease, and renal tubular acidosis.8 Neuroleptic malignant syndrome, as well as severe extrapyramidal reactions, may also present initially with catatonic features, and has been considered by some to be a subset of catatonia.9 While no studies have specifically evaluated the prevalence of drug-induced catatonia, studies regarding general causes of catatonia suggest that 17-19% of all cases diagnosed as medical catatonia are actually drug-induced catatonia.
Another study found that antipsychotic-induced catatonia accounted for 24% of all catatonic patients referred to the ED of a general hospital.
Drug-induced catatonia has mostly been reported with psychotropic drugs, including fluphenazine, haloperidol, risperidone, and clozapine,non-psychotropic drugs such as steroids, disulfiram, ciprofloxacin, several benzodiazepines, as well as drugs of abuse, including phencyclidine, cannabis, mescaline, LSD, cocaine and ecstasy.
While psychiatric disorders may simply cause catatonia, it does appear that medications themselves can either cause or unmask an underlying predisposition to catatonia. The mechanism by which medications cause catatonia is not known. Mechanisms have been proposed based on animal models: 1) dopamine hypoactivity at the D2 receptor, 2) GABA hypoactivity at the GABAA receptor and hyperactivity at the GABAB receptor, 3) serotonin hyperactivity at 5-HT1A receptor and hypoactivity at 5-HT2A receptor, and 4) glutamate hypoactivity at the NMDA receptor.
Paliperidone is the active major metabolite of risperidone. It was approved by the FDA in December 2006 and released to consumers in the United States in January 2007. Its therapeutic activity is believed to be a result of both central dopamine type 2 and serotonin type 2 receptor antagonism. It is also an antagonist at α1 and α2 adrenergic receptors and H1 histaminergic receptors.
Plasma concentrations are estimated to peak approximately 24 hours after dosing with a terminal half-life of approximately 23 hours. Bioavailability is 28% with apparent volume of distribution of 487 L. Plasma protein binding of paliperidone is 74%. Unlike risperidone, paliperidone is not extensively metabolized by the cytochrome P450 enzymes and is not expected to cause clinically relevant pharmacokinetic drug interactions.10,11 ED evaluation of patients who present with catatonic symptoms requires a comprehensive evaluation and a wide differential and should not be initially attributed to the underlying psychiatric disorder. Treatable common causes of catatonia should be ruled out. Further diagnostic and laboratory studies may include complete blood count, comprehensive metabolic panel, thyroid stimulating hormone, urinalysis, cerebral spinal fluid evaluation, CT, magnetic resonance imaging, EEG, and other studies as clinical history and physical findings dictate.
In most cases of drug-induced catatonia, stopping the implicated drug and supportive care is usually sufficient.
Benzodiazepines and electroconvulsive therapy have also been recommended as potential treatments.5,12
Typical antipsychotics such as haloperidol should be avoided, although a trial of atypical antipsychotics (e.g. risperidone, olanzapine) has been suggested for patients who do not respond to other measures.3,4,13,14
Caution should be taken in considering using paliperidone in patients who have already had previous adverse reaction to risperidone.
Anticonvulsants, valproate,1 and carbamazepine2 have also been reported to be effective but may take longer to work than benzodiazepines. The Naranjo scale of adverse drug reactions15 is a validated score that assesses the probability of a causal relationship between a drug and a clinical event and is Paliperidone-Induced Catatonia McKeown et al. Volume XI, no. 2 : May 2010 188 reported based on several criteria as definite, probable, possible, and doubtful. Although this medication-catatonia relationship was scored as “possible” on the Naranjo scale, there had been no other change in medications or initiation of other medications, which may have been responsible for her condition. Also of note is no previous history of catatonic-like symptoms presented prior to initiation or after discontinuation of the paliperidone.
SUMMARY: A number of medications have been associated with catatonia, including antipsychotics. Providers should consider multiple etiologies when evaluating a patient who presents with catatonia-like symptoms. Paliperidone, similar to risperidone, may be a cause of drug-induced catatonia.
Address for Correspondence: Nathanael J McKeown, DO. Oregon Health & Science University, 3181 SW Sam Jackson Park Rd, Mail Code CB550, Portland, OR 97239. Email: email@example.com.
Conflicts of Interest: By the WestJEM article submission agreement, all authors are required to disclose all affiliations, funding sources, and financial or management relationships that could be perceived as potential sources of bias. The authors disclosed none. REFERENCES 1. Bahro M, Kampf C, Strnad J. Catatonia under medication with risperidone in a 61-year-old patient. Acta Psychiatry Scand. 1999; 99:222-6 2. Parraga H, Harris K. Catatonia under treatment with risperidone. J Dev Behav Pediatr. 2006; 27:369 3. Cook EH Jr, Olson K, Pliskin N. Response of organic catatonia to risperidone. Arch Gen Psychiatry. 1996; 53:82-3 4. Valevski A, Loebl T, Keren T, et al. Response of catatonia to risperidone: two case reports. Clin Neuropharm 2001; 24:228-31 5. Duggal HS, Singh I. Drug induced catatonia. Drugs of Today. 2005;41:599-607 6. Fink M, Taylor MA. Catatonia: A Clinician’s Guide to Diagnosis and Treatment. Cambridge, UK: Cambridge University Press; 2003 7. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th Ed. Washington D.C.: American Psychiatric Association; 1994 8. Huang TL, Ree SC, Huang YC, et al. Catatonic features: Differential diagnosis and treatments at an emergency unit. Psychiatry Clin Neurosci. 1999; 53:63-6 9. Taylor MA, Fink M. Catatonia in psychiatric classification: A home of its own. Am J Psychiatry. 2003; 160:1233-41 10. Paliperidone (Invega) for schizophrenia. Med Lett Drugs Ther. 2007;49:21-3 11. Invega (paliperidone) package insert. Janssen Pharmaceuticals. Issued 12/2006 12. Fricchione GL, Cassem NH, Hooberman D, et al. Intravenous lorazepam in neuroleptic-induced catatonia. J Clin Psychopharmacol. 1983; 3:338-42 13. Duggal HS, Nuñez CY. Risperidone treatment of periodic catatonia. Can J Psychiatry. 2005; 50:241-2 14. Hesslinger B, Walden J, Normann C. Acute and long-term treatment of catatonia with risperidone. Pharmacopsychiatry. 2001; 34:25–6 15. Kruger S, Braunig P. Intravenous valproic acid in the treatment of severe catatonia. J Neuropsychiatry Clin Neurosci. 2001;13:303–4 16. Kritzinger PR, Jordaan GP. Catatonia: an open prospective series with carbamazepine. Int J Neuropsychopharmacol. 2001;4:251–7 17. Naranjo CA, Busto U, Seller EM, et al. A method for estimating the probability of adverse drug reactions. Clin Pharmacol Ther. 1981; 30:239-45
Catatonia and catatonia-type breakdown in autism
Published on 06 December 2016
Author: Dr Amitta Shah
Dr Amitta Shah is a Consultant Clinical Psychologist with over 35 years’ experience in working with autistic children and adults. She has expertise in the diagnosis and management of catatonia in autism and has published papers on the subject with Dr Lorna Wing. Here she shares her insight and expertise of this under-recognised and poorly understood condition.
What is catatonia?
Catatonia is a complex neuro-psychological disorder which refers to a cluster of abnormalities in movement, volition, speech and behaviour. Historically, the term catatonia has been associated with schizophrenia and psychoses,but it is now recognised that it can occur with a range of conditions.
Catatonia in varying degrees can occur in autistic children and adults. Studies suggest that between 12-18% of autistic people may present with varying levels of catatonia (Wing & Shah, 2000; Billstedt et al. 2005; Ghaziuddin et al, 2012). However, actual prevalence is likely to be higher as there are probably a lot more people with autism and catatonia who do not have a diagnosis and are not known to services.
Clinicians do not generally recognise the gradual presentation which occurs in autistic people rather than the full blown catatonic stupor state which is easy to diagnose and familiar to clinicians. Thus, catatonia type breakdown is rarely picked up at an early stage, and often misdiagnosed and mistreated. However, if it is picked up early, it is easier to treat and can be reversed. Catatonia type breakdown can progress to full blown catatonia which is extremely difficult to treat and can lead to total immobility, dependence on all aspects of daily living and can become life-threatening.
Catatonia-like breakdown causes enormous stress to families and affects the quality of life of the individual concerned in extreme ways. It is acknowledged that it is difficult to diagnose and treat especially as the symptoms and severity can fluctuate from day to day and also over time. It is one of the most enigmatic and challenging aspect of autism but the lack of clinical and research interest in this condition is of great concern and needs to be addressed.
Symptoms of catatonia in autism
As early identification and diagnosis is important, it is crucial for all relevant professionals, clinicians, parents and carers to be aware of early indicators of a catatonia-like breakdown in autistic people. In particular, catatonia-like breakdown should be considered as a possible diagnosis for any autistic individual who shows a marked and obvious deterioration in:
level of activity
a regression in self-care, practical skills and independence compared to previous levels.
Specific indicators of an onset of catatonia type breakdown may include any of the following:
freezing during actions
increase in repetitive movements and hesitations
difficulty in crossing thresholds and completing movements
marked reduction in speech or complete mutism
difficulty in initiating and inhibition of actions
increased reliance on physical or verbal prompts for functioning
increase in repetitive and ritualistic behaviours
getting locked in postures.
There is very little research evidence to guide medical treatment of catatonia in autistic people. The studies which are published on the treatment of catatonia in autism spectrum disorders (ASD) are mainly single case studies using various psychiatric medications or electroconvulsive therapy (ECT) for cases with acute catatonic stupor.
There is a recent paper (De Jong, Bunton and Hare, 2014) which has reported a systematic review of the literature on all interventions used to treat catatonic symptoms in autistic people. The conclusions are that the quality of the studies is poor and there is no convincing evidence that any particular medication or ECT is effective for catatonia type breakdown. The studies also worryingly ignored the side-effects of these treatments and rarely reported long term follow-up of effects.
In the absence of relevant good quality evidence based research, it is important for professionals and carers to refer to guidelines developed by experienced clinicians. Treatment guidelines based on clinical experience are given for mild, moderate and severe catatonia in Dhossche, Shah and Wing (2006). It is imperative for clinicians not to overlook that psychiatric medications may trigger or worsen Catatonia in autistic individuals. Also, drastic treatments such as ECT and/or high doses of lorazepam should only be tried as a very last resort in cases of severe catatonia which is life-threatening.
We recommend a psychological approach which is based on our finding that stress and anxiety, and side effects of psychiatric medication are the main causes of catatonia-like breakdown (Wing & Shah, 2000). This is an individual approach which investigates the particular stress for the person concerned and addresses this based on a comprehensive psychological assessment and working with carers and local multi-disciplinary teams to implement a holistic plan. This is described in Shah and Wing (2006). The main aspects of this approach include the following:
early identification of possible indicators
psycho-education to promote understanding of the condition, in particular to carers, professionals and service providers
searching for and eliminating any possible causes such as psychiatric medications
assessment of the person’s autism and their vulnerability to stress
identification of stress factors which may include environmental, lifestyle, and psychological
reducing and eliminating stress factors which may include changes in the environment, daily programme, increased staffing and support, etc.
providing verbal and physical prompts to overcome movement difficulties
maintaining and increasing activities which the person enjoys or has done so previously
providing external stimulation and motivation at appropriate levels to keep the person engaged and responsive and active
increasing structure and predictability and occupation.
Exhaustion (fatigue) and then burnout can happen to anybody. Being autistic can make fatigue and burnout more likely, due to the pressures of social situations and sensory overload. If your child or the person you care for is experiencing fatigue or burnout, helping them to manage their energy levels is essential, as this guide explains.
What is autistic fatigue and autistic burnout?
‘Autistic fatigue’ and ‘autistic burnout’ are terms that came from autistic people, and we are learning from the experiences of autistic adults.
Fatigue, and then subsequent burnout, can happen to anybody. Autistic people, however, can be more susceptible to both, due to the pressures of everyday life, having to navigate social situations and sensory overload.
Trying to cope with these pressures can lead to exhaustion (autistic fatigue) and over time this can lead to extreme exhaustion or autistic burnout.
Autistic adults have described various ways that autistic fatigue and burnout have affected them. Autistic fatigue has often been described as exhaustion with additional difficulties such as:
increased meltdowns and sensory sensitivity
physical pain and headaches
physically shutting down, including the loss of speech.
Autistic burnout affects all aspects of a person’s life, and this makes it different from professional burnout, which is related to work.
What causes autistic fatigue and burnout?
There are various things that can cause autistic fatigue. Autistic adults suggest several causes, including:
dealing with social situations
masking or camouflaging their autistic traits
a sense of not meeting other people’s/society’s expectations of them.
Changes in your routines or day-to-day life, such as a change of school or job, can increase anxiety and can be additional causes for autistic fatigue and burnout.
Due to increased sensitivity and stress levels during autistic fatigue, your child may be less able to recover quickly from meltdowns. This exacerbates the exhaustion and stress they experience.
What can I do if the person I care for is experiencing autistic fatigue and burnout?
Use energy accounting
Energy accounting is a system used to set manageable limits on your energy levels so you do not deplete yourself to the point of burnout.
Help your child or the person you care for to set a limit on how much energy they have in a day or week and estimate how much certain activities drain them. Also work out how much certain activities energise them.
You can then try to plan and balance their activities and energy over a day or week to try and manage stress limits. Make sure you build in time for relaxation and recovery.
Time off and rest/relaxation
Whether you use energy accounting or not, time off from work or school and other high-stress activities is key to managing stress levels. Ensuring time for activities/interests that re-energise and promote relaxation is key. This could be connecting with family and friends or enjoying hobbies or interests.
Time without having to mask
Autistic people often feel the need to hide or mask their autistic traits in public, for example by suppressing the urge to stim. It can be important to factor times into your child’s day for things like stimming, somewhere they feel comfortable and able to do so.
Anyway there is no doubt my daughter Elizabeth has had the most horrific time prescribed drugs that all physicians were well aware there was previous allergy recorded yet they continued. The Doctors were well aware because I sent the drugs charts with a line put through Risperidone as being allergic to. Most concerning of all the SOADs provided by the CQC did nothing to protect Elizabeth and allowed maximum levels of drugging to the point she is recorded as being of “high risk of mortality” Mews Score 3.
The rest of the family came to visit Elizabeth yesterday and were in tears at her decline.
Elizabeth spent most of the time asleep in her bed. She also suffers incontinence – there is something wrong with her breathing. They have discharged Elizabeth with Catatonia – now they are having to take her off the antipsychotic drugs which caused this condition. I would accuse Barnet Enfield and Haringey MH Trust of causing injury and all the other hospitals of going along with treatment that clearly was not working resulting in seclusion after seclusion – nothing but punishment.
Elizabeth knows there is something very wrong with her right now. She has spoken that she is too damaged to fix.
Parents/carers like me are left to pick up the pieces and I believe there was a reason why Elizabeth was scheduled to go to the Priory – all of this would have been simply covered up if that had happened.
A big thank you to NAS, Mencap and Access Charities for helping us.
We stayed in a nice hotel overnight and arrived by cab today at the Maudsley Outpatient’s Department. I struggled to push and control the wheelchair which is very heavy but staff there were most helpful. Elizabeth suffers from vertigo and blurred vision now she is on fortnightly Clopixol depot which I have looked up to be side effects of the drug currently being prescribed. There is also there is something wrong with Elizabeth’s breathing (noticed by her previous care coordinator). Elizabeth is recorded in most recent files as being of “high risk of mortality” and having a “Mews Score 2”. She was discharged from “care” in a bad way, barely able to walk and with only physical health conditions stated on the Discharge Note; I assume this is why she is being taken off all psychiatric “medication”. No-one will explain exactly what is meant on the Discharge Notice. Anyway, on London Underground as well as over-ground the services we experienced were first class service. I was most impressed with how staff dealt with us and went out of their way to help. Dr Cumming carried out the assessment alone with Elizabeth whilst I was interviewed separately by someone whose name sounded very familiar, (Alex). I do not know if Elizabeth communicated well with Dr Cumming during the assessment because she finds it very hard to talk to men, having been so badly abused whilst under care. She said words to this effect that she was not going to speak much during the assessment and felt very uncomfortable that the assessment was with a man, despite my reassurance that Dr Cumming was an expert in the field of autism. As for the other Doctor who interviewed me, I am not sure if this is the same “Alex” who was present previously at an assessment back in 2012 when Elizabeth was referred to the National Psychosis Unit. Elizabeth was panicking about this autism assessment prior to it but autism is what she identifies as her diagnosis and has done so for quite some time now, having researched it extensively. She hates meetings of any kind and was fearful, thinking that this would be similar to an exam where you pass or fail as it meant so much to her to have this Autism diagnosis. It took all my effort to even get her to come downstairs to the dining room for breakfast. I had to virtually dress Elizabeth and she kept saying “I do not think I can go through with this” over and over again and then accused me of being abusive in taking her to Maudsley yet she desperately wanted this appointment. The most recent screening at Elysium pointed to autism Cygnet commented to this effect also but neither of these institutions carried out a proper autism assessment and therefore they would not budge from mental health labels given locally. St Pancreas Hospital commented that they were “guided” by the local area and of course they were being funded by local Commissioners (North Central London CCG – JR and JM). Since I have been accused of influencing Elizabeth I told Dr Cumming and Alex that it was Elizabeth who thought she had autism but I would not disagree with this, having read past file notes going right back to the first referral plus the extensive research that Elizabeth had sent to me. I had little contact with Elizabeth whilst at Elysium and Cygnet and so could not have put words in her head about her diagnosis. The assessment took place between 1.00 pm and 4.00 pm today which again concerned me as I knew that Elizabeth would be very tired. She has to constantly rest and sleep during the day which is not normal for a young person of 34. She was not like this before her admission back in May 2020. I’ve no idea of the outcome of this assessment as Dr Cumming commented that this was a “complex case”, stating he could not give an immediate answer and this would entail having to liaise with other professionals. However this concerned me especially because of the way Elizabeth has been treated locally under Chase Farm Hospital Enfield MH whose RC did not complete the discharge note, leaving this to others in the Home Treatment Team to do so. The worst thing is that this assessment may not have Elizabeth’s desired outcome. I was questioned by “Alex” separately who went right back to early childhood between the age of 1 – 4. Many of the questions I could not answer because I was working, not around to observe the pattern of play etc. Apart from mentioning that Elizabeth was extremely reserved and did not mix well with others, there was nothing of huge concern, except for her physical health. I commented on lots of activities I provided in the hope that this might help Elizabeth such as ballet, swimming, piano lessons and Brownies etc. I knew nothing back then about Autism and was not looking out for abnormal behaviour because I was swamped with caring responsibilities for my father who had Alzheimers and working too. What I did point out was Elizabeth’s ill health as a small child who suffered from asthma so badly I changed the entire windows to my house as I felt they affected her due to condensation. I mentioned that Elizabeth was prescribed steroids by her GP as a small child and underwent a hernia operation as an emergency case and that this was not identified immediately by her GP Surgery. She had a strangulated hernia and steroids were prescribed when Elizabeth developed a bright red rash so she was not at all well as a small child. I verbally corrected certain things going way back wrongly recorded in the files – told them about an MRI scan revealing a cyst and that there were complications at birth recorded wrongly as “normal”. I also advised Alex that doctors right from the very beginning thought her condition to be developmental/Autism. There was no mention of Schizophrenia. There was nothing in particular to make Elizabeth stand out re behavioural problems as a small child but it was at secondary school it became evident she avoided certain lessons and played truant to avoid lessons she either found difficult or did not like. According to someone related to a friend of mine who was in Elizabeth’s class at school, she was totally “spaced out”. Classes consisted of over 30 pupils and so perhaps this was just not noticed by teachers. There were several occasions where Elizabeth went out of her way to avoid going to school and once washed her entire uniform and put this on the washing line in freezing conditions so she had nothing to wear but I went out and bought new uniform and insisted she went to school. Then there were situations such as work experience where she worked in a kitchen and it was the time of the World Cup where the canteen would be busy and Elizabeth refused to go in so I insisted. This she has not forgotten and now says I abused her for making her go to school etc. She even refers back beyond secondary school to primary school that she was struggling but no-one noticed this so I have no idea whether what I said to Alex ticked the right boxes.
After my interview by Alex I was shown out of the room and joined Elizabeth who looked very stressed out and not at all happy. Dr Cumming and Alex then saw us together and there were further questions. The whole thing had been an absolute ordeal for Elizabeth who insists she is Autistic and will probably continue to say she is autistic no matter what the result of the assessment. I certainly respect this and have seen traits that match the description of the Autism condition. Elizabeth has spent many hours researching the condition of Autism extensively on the internet and has sent me the research papers/articles which she can associate with. Elizabeth has also researched pigeons, species of pigeons and birds in general plus the kind of music she likes which is not to my taste at all as I find it very depressing but Elizabeth says I do not understand but she takes huge note of the lyrics.
There is much mention of Autism whilst she was under Elysium Thornford Park where she underwent screening which is recorded in file papers/emails plus other disturbing matters since Elizabeth admitted the abuse suffered at Moti Villa and prior to this which she does not usually talk about. Elysium were fully aware yet it is constantly mentioned in file notes that Elizabeth had male patients outside her door at night which was very triggering for her.
It is the local area who have consistently refused to budge on autism and carried out their own assessments against Elizabeth’s wishes which I see as conflict of interest. Commissioners at first refused the CTR until Mencap/NAS and Access got involved. We are so grateful to them as otherwise Elizabeth would have been sent to the Priory “to establish her greater on medication” which says it all and the findings recorded on the Discharge Notice would not have been known about. Local doctors/team at Chase Farm Hospital Enfield (Suffolk Ward) and in the community have stuck with “Paranoid Schizophrenia” for so long and prescribing drugs such as Risperidone knowing full well that she was previously found to be allergic. However now they can no longer state Schizophrenia as the Discharge Note clearly points to “abnormal findings on scans” -not one mention of ICD10 F20.”
Extracts from Elysium’s Files “of high risk of Mortality and choking”
File note dated 13.08.2020 an entry by BY 15.40 1-1 Psychology: “her belief is that she has high functioning autism”. (this is what Huntercombe reported) “EB appeared fairly focused on her belief that she has Autism and with attaining a diagnosis of Autism though she avoided questioning on what led her to believe she had Autism she personally finds difficult, which could relate to Autism”. In another file note “EB was feeling distressed about her medication and her diagnosis.” OTA recommended her to speak with the doctor or nurse in charge to which she responded that “they were males.” this signified that Elizabeth found it difficult to speak to any male professionals.
File note 06.08.2020 Psychological by TM 16.04: “EB does not agree with her diagnosis of Paranoid Schizophrenia and believes she is Autistic.” She confirmed “I have not been diagnosed formally with Autism but want an assessment done.” All along Elizabeth mentioned of her dislike of male nursing staff.
In another file note Elizabeth enquired “when is the the ASD screening taking place”.
Elysium file note dated 24.09.2020: “I have autism you know, they keep giving me medication for Schizophrenia but I have autism”. She referred about flashbacks and nightmares of rape under care at Moti Villa which is wrongly recorded as being consensual. Absolute rubbish!
File note dated 09.09.2020: I do not agree with my diagnosis and want to come home and not be sent away to a locked rehab. Despite this she was assessed for Bromley Road locked rehab where she did not want to go. JM Commissioner at NCLCCGEnfield is mentioned as it was referred to her that Elizabeth wanted to go to somewhere where they had animals not a locked ward.
File note dated 20.08.2020 (BY): “a full autism assessment would not be completed at Curridge Ward”. During two months of incarceration costing not far off £6000 a week it should be questioned as to why Elysium could not do an Autism assessment and why she was sent back to the local area just when Dr Harinder Bains took over and promised an autism assessment. She was not meant to come back to the locality as it was decided against her wishes for her to be sent to another locked rehab despite the fact she clearly emphasised she did not wish to go and wanted to come home. Why have the Commissioners paid so much public money on wrong facilities that have not helped in the slightest bit and have led to her being discharged even more disabled than we have ever witnessed before.
File note 04.08.2020: “she denied having a mental illness stating she has autism” – “Why cant I go to my own flat instead of being here?” (good question!). There is also disturbing evidence that Elysium could not read writing which was illegible on a drugs chart no doubt from Suffolk Ward about the frequency of the depot injection which is most disturbing.
File note 14.08.2020: “she phoned police to report she was not being looked after well as she is Autistic yet held as a MH patient”. This led to her being placed in seclusion as a punishment by Elysium where they kept offering her medication which she refused but accepted PRN when they threatened her with IM medication. It was mentioned that she received two IM injections. “no further management issues!” (this is what is recorded). Her mobile phone was confiscated by Elysium for “improper use” for calling the police. When Elizabeth asked for her mobile to be returned to her nursing staff said “her behaviour did not warrant having her mobile back”.
File note 07.09.2020: this mentions about her pigeons and her feeling of being unsafe around men who worked on the ward.
With regard to the ASD screening this is mentioned in file note 28.08.2020: it had to be abandoned due to the depot making her feel so tired.
My daughter’s treatment at Elysium was quite shocking – in another file note it is stated that a second antipsychotic not authorised by the SOAD (Haloperidol) also prescribed by Cygnet Godden Green was discontinued.
File Note 21.08.20 (DM) ignored the SOAD stating that Elizabeth required a second antispychotic approving IM if she refused tablet form. So this went against SOAD advice. They tried to cover up a prescription of Procyclidine which was questioned at the Tribunal but Elizabeth had refused this Parkinsons drug apparently.
File note 05.10.2020 states: “EB does not believe she has a mental illness but has physical health issues and referred to the private tests done through endocrinology”. (quite right too yet this is recorded as lack of insight despite the extensive private tests done through Endocrinology pointing to endocrine dysfunction) Elysium put two male nurses on 2:1 obs outside Elizabeth’s room which was really triggering and yet they knew this as she had admitted the truth of what happened under Moti Villa and beyond. I honestly feel that this was cruelty on their part and lack of insight as stated in file note 14.09/2020 and further referenced in file note 09.09.20 “she dislikes having too many male staff around and struggles at night.” File note 30.09.2020 stated “paranoid about staff especially male staff she feels uncomfortable around” then disturbingly ignoring the P450 liver enzyme test results “Sought T3 allowing up to 150% BNF max antipsychotics “no allergies recorded” (Oh yes there were allergies recorded they were made well and truly aware of” File note 25.08.2020 records how Elizabeth was triggered by male members of staff. “I feel I am being abused”. (yes I have no doubt of that) “Disturbed by male members of staff talking outside her door last night” as per – file note 07.08.2020. All the time whilst at Elysium she was missing her flat and pigeons. All the time Elizabeth was talking about having autism and wanting an assessment.
File note 29.09.2020: “I have received the SOAD certificate regarding increasing antipsychotics to 150% BNF max. EB has been angry today about her medication so I decided not to inform her today. I will inform her should we ever decide to increase the dose or add in a second prn antipsychotic.” (But this is against SOAD advice!) and also it is stated that at the time whilst being prescribed max medication she had no capacity by Elysium.
So the outcome of the autism assessment is up in the air, pending further investigation and contact no doubt with local team who will deny such diagnosis whilst they desperately stick together and try to cover everything up and the harm they have caused. What concerns me is that Elizabeth has not been treated fairly all along by them for so many years and not been listened to by anyone other than me, which has led to be being extensively bullied when I have spoken up for her and then taken to court so often to get rid of me as the Nearest Relative. Most recently I have featured about being labelled as Vexatious which previously they tried and failed to do. This only occurs when there is something big to cover up and in steps the Medical Director and Chief Nurse to assist staff and even higher up the Chief Executive Officer to not respond to my MP in over a year.
I do think Elizabeth has Autism traits as she is constantly extensively researching topics of interest to her such as her condition of autism, her taste in music, favourite bands and certain places she would like to visit, ie countries such as Germany as she describes herself as a German lady even though she was born here in the UK. That is because her Grandma was German and she was close to her Grandma. Also she extensively researches medication currently being prescribed and about her pigeons that visit her balcony, all of whom she has named. She has a very different way of communicating and interpreting situations which was discovered when she went to stay with private MH professionals in their home on the Isle of Lewis and in Australia, who saw no sign of any psychosis but thought her condition was developmental which I would not disagree with at all. No way did any of these professionals in four months think she had paranoid schizophrenia.
I was asked the question by Dr cumming “if the diagnosis did not come out as Autism what would be my reaction?”. I told Dr Cumming that it is not me who wanted the Autism diagnosis but that it would mean so much to Elizabeth and I described how overjoyed Elizabeth was at being told by the whole team at Huntercombe, Roehampton, that she had high spectrum Schizophrenia. Joy soon turned to despair when this entire team was ignored by Dr HM of Suffolk Ward who also ignored her her own drugs charts stating Allergy to Risperidone. I told Dr Cumming that if in his opinion the diagnosis was not Autism, especially after he consults with the local area, now that the Discharge Note states all physical concerns and no mention of mental health, I would want to know which of the following CNS conditions applied and I showed him the Discharge Note which states:
OTHER ABNORMAL FINDINGS ON DIAGNOSTIC IMAGING OF CENTRAL NERVOUS SYSTEM
OTHER AND UNSPECIFIED SYMPTOMS AND SIGNS INVOLVING COGNITIVE FUNCTIONS AND AWARENESS
The central nervous system is the largest and the most complex part of the nervous system. It works to align the activities of all the body parts and is vulnerable to different disorders and diseases. The article throws light on the various disorders of the central nervous system.
The central nervous system (CNS) plays an important role in controlling the human behavior. It comprises two main components: the brain and the spinal cord. This system is held within the dorsal cavity, with the brain in the cranial cavity and the spinal cord in the spinal cavity. The nervous system is made up of nerve cells, called neurons, which allow the various parts of the body to coordinate with each other through the brain and the spinal cord.
A person affected by any type of disorder of the CNS may be identified due to the symptoms such as delay in developmental milestones, changes in activity, reflexes or movements, abnormal head growth, variations in level of consciousness or mood, muscle rigidity, tremors or seizures, severe headaches, visual changes, and lack of coordination.
Disorders of the CNS
Transverse Myelitis (TM)
It is an inflammatory attack on the spinal cord, with no brain or optic nerve involvement. It is mainly a monophasic condition where the attack occurs only once. In rare cases, the patient may experience more than one inflammatory attack on their spinal cord, and this condition is called recurrent TM. Some patients may also experience an inflammatory attack in the spinal cord along with an underlying rheumatic disorder like Lupus or Sjogren’s syndrome. Since the underlying cause is unknown, it is also referred to as idiopathic TM. The symptoms of TM develop quickly within a few hours to a few weeks. The spinal cord is responsible for carrying motor nerve fibers to the limbs, trunk, and sensory fibers from the body back to the brain. Inflammation within the spinal cord disrupts these pathways and causes symptoms like limb weakness, sensory disturbance, bowel and bladder malfunction, back pain, and radicular pain.
Neuromyelitis Optica or Devic’s Disease
It involves inflammatory attacks in the spinal cord and optic nerve. A person affected by this condition is at a higher risk for multiple attacks of spinal cord inflammation or optic neuritis, or both. The main symptoms of NMO are loss of vision and spinal cord dysfunction. The visual impairment is manifested by visual field defects, loss of color vision, decreased visual activity, etc. The spinal cord dysfunction causes muscle weakness, reduced sensation, and loss of bladder and bowel control. Patients may also experience an acute and severe spastic weakness of the legs (paraparesis) or all four limbs (tetraparesis).
It involves an inflammatory attack that may occur anywhere within the CNS, i.e. brain, spinal cord, or optic nerves. The disease usually occurs in young adults, and is more common in females. Most of the patients have brain lesions during the onset of the disease. A person affected by multiple sclerosis may observe symptoms like muscle spasms, dysarthria, lack of coordination and balance (ataxia), hypoesthesia and paraesthesia, visual problems, and loss of bladder and bowel control. Its relapses are quite unpredictable and happen without any warning or obvious inciting factors.
It is a progressive, neurodegenerative disease that affects the brain and is a common form of dementia. It reduces thegeneration of certain brain chemicals which are essential for communication between the nerve cells like norepinephrine, soamtostatin, acetylcholine, and serotonin. The causes for the disease are not completely known butabnormal protein deposits in the brain, environmental or genetic factors are some suspected causes. Alzheimer’sdisease leads to impaired memory or judgment, language deterioration, emotional apathy, and impaired visiospatial skills.
Some other disorders are Parkinson’s disease, epilepsy, amyotrophic lateral sclerosis (ALS), Huntington’s chorea, etc. Presently there’s no cure for these disorders but treatments like medication, rehabilitation activities, clinical trials, and assistive technology may be beneficial for the patients.
There has been a wall of silence since I have tried to find out about the above. If the diagnosis does not come out as autism then one of the above must apply and I as a mother want some answers especially as regards the abnormalities discovered in scans. It is all very well the Community RC Dr IM stating that diagnosis is unimportant. Well of course it is especially when you need to inform the DWP on what the real diagnosis is. There is such an enormous backlog by the DWP going back to February apparently so Elizabeth is not in receipt of benefits she is entitled to now she has come out so injured by her treatment over the past year to the point she can barely walk.
After the assessment was over, it was hard work getting back home, as home is a fair distance away and a bit of an awkward journey which meant having to get the wheelchair onto trains and buses but once again I could not fault London Transport and their help and support.
By the time we were on the Tube bound for Oakwood Elizabeth was not at all happy and kept moving from one seat to another. – a man sat on the sea next to her with a guitar which disturbed her greatly and so did young children on the carriage. I struggled to push the wheel chair with Elizabeth on it and I decided to return Elizabeth straight back to her flat as she was clearly traumatised and not at all happy at all. This is when she can flair up and no amount of drug treatment can calm her when she is like this and just needs rest and space from crowds of people and unfamiliar surroundings of detrimental effect on her. Much of the traits I have noticed in her behaviour I have seen similar to that of my father who had Alzheimers who did not take well to changes and displayed fear in his behaviour. He also took to certain carers better than others especially his regular carers rather than at the care home where he attended day centres.
I have noticed that Elizabeth also does not like any changes. She does not like to engage with people and often says that she is not a person and is totally mixed up as to whom she is. Sometimes she can flare up and say the most hurtful things and the word “abuse” is a big word in her vocabulary she uses this all the time. This can apply to even my effort to take her to various GP referrals because she does not like attending anything like this. She especially refers to mental health professionals who give her the depot as being abusive.
I told the doctors today that I did not disagree with autism and have respected Elizabeth’s understanding that this is her condition which most certainly is not schizophrenia. Elizabeth has even sent me research papers to educate me on autism and says no-one under MH understands her. However, I think there is something else wrong of a physical nature in addition that is neurological rather than mental illness. You only have to look at the files from Elysium and how they drug people to the hilt ignoring STOMP which could point to injury or perhaps the abnormal scans took place before admission going back to May 2020 as Elizabeth recalls having scans done then. I believe Elizabeth’s treatment over the past year has led to further decline to the point that she now has serious physical health concerns. Finally the GP surgery is taking things seriously unlike before when she was begging for help and attention and now they are making referrals for ultrasound and ECGs. There is clearly something wrong with Elizabeth’s breathing, she has excess saliva – I am not even a doctor to conclude this. Whatever were these doctors doing and especially the CQC SOAD allowing prescription of drugs to the max level without a thought for Elizabeth’s physical health which has now been destroyed or has this in fact always been evident right from Birth but ignored by physicians.
Whatever the outcome of the Autism Assessment there needs to be a full and thorough investigation because Elizabeth is entitled to know what her real diagnosis is as it has changed so dramatically. I am not letting this drop or be dismissed even more so if her diagnosis she feels applies as “autism” is rejected. How many more people are affected by misdiagnosis and treated wrongly to the point they become completely disabled like Elizabeth which then has a knock-on effect on their families who suffer as a consequence.
“Autism is like a sponge absorbing everything around you then you become stressed”
Because my Mum’s car has been damaged she ordered a wheelchair for me as I have balance problems walking. It was fantastic to be in the wheelchair. When we arrived at the GP surgery we were early and had to wait I then began to feel stressed as there were other people waiting but my Mum explained we were early and that she had to allow extra time to get there without a car. I became irritated by my Mum moving the wheelchair which was on a slope. Also she could not control the wheelchair which I found irritating. I was then asked to come into the surgery to be weighed but at first the machine did not work. I then was asked to put my arm into a machine to test my blood pressure which I did not like at all.
I became irritated again by a further wait outside and shouted “why are here here” and who is Dr ……..” “I want to go now” but my Mum insisted we were early and should wait a bit longer. She pushed the wheelchair away from the other people because she could see I was getting stressed.
Then someone announced a room suitable for a wheelchair had been found and that they were getting it ready or something. I was not happy by the time we got in there and it was a small room and I felt claustrophobic and there were two female professionals in there plus my Mum. My Mum had again failed to control the wheelchair in getting into the room. We were asked if we did not mind a student doctor to carry out the health check. I did not mind and Dr ……………….was very nice. She asked me how I was feeling. I have trouble answering questions because of my autism – I think I said fine but I am not fine really and sometimes things I say come out wrong and I cannot stop this from happening and neither can I stop my reaction to some things. My Mum started to talk and said things were not fine and was going on about it. I feel uncomfortable in answering questions but I was asked questions regarding my mental health too and autism is not a mental health condition and I have looked everything up on the internet about autism which is what I have. I was also asked about whether I was suicidal. Sometimes I have felt that way especially when I was on the ward but I have not ever tried to take my life. I just find it hard to cope sometimes and do not feel part of the community and I do not feel like a person at times. I have been told I have a hormone imbalance and have had endocrine tests done. I am glad I am now getting physical health attention as under the mental health and during the lockdown I felt my physical health declined and I spent most of my time in my room on the ward because I could not stand the noise.
I was then asked about my living accommodation which is an independent flat. I have been in supported living and housing before which has been awful but I found it triggering to hear my Mum talking about how dreadful the schemes have been and I reacted to this. I am happier living in my own home because it is more comfortable. From my balcony I can see the birds and my pigeons. The thing I do not like is the noise. There are major works going on right now and scaffolding outside my flat and builders shouting to one another. I have sensory issues and found it difficult on the wards so this is not good.
The health check did not take long but now I am getting messages on my phone to book appointments for assessments. I tried to do this but gave up because it was too stressful and I find it difficult to talk on the phone. I usually text my mum and I asked her to book the appointments in the end.
After the health check my Mum pushed me in the wheelchair through the town to the garage to pick up her car. It needs a new exhaust and catalytic converter but it is not cheap but when I got to the garage I became stressed again because my Mum was taking her time getting the wheelchair in the car – it is not a suitable car for a wheelchair but eventually we got back to my flat and I felt happy to be home as I get stressed out when it is not quiet and peaceful
Tomorrow I have to be up early for another blood test for B12 and Folate Acid but I refuse to take the folate acid any more as this made me ill.
I have written this on a piece of paper and asked my Mum to post it on her blog.
For many years there has been massive dispute on Elizabeth’s diagnosis and Elizabeth disputes the diagnosis herself which shows she has FULL capacity. Her exact words are:
“When I said that I had autism they didn’t believe me. This is very bad the way I’ve been treated. I have been treated for Schizophrenia when I did not have it.”
How can an initial diagnosis be so totally overlooked and then switched to “Schizophrenia unspecified”, then to paranoid schizophrenia “treatment resistant” and then then it is recorded in files as “Developmental/autism” but it is also recorded “Anterior Region Medial Temporal Compromise” and this is NOT a mental illness but brain injury.
The significant entries under ICD10 codes on the Discharge Form dated 5 June 2021 prompted me to enquire further but today I encountered difficulty and there appears to be a wall of silence. The Clinician on the Discharge Form is not the Responsible Clinician from Suffolk Ward which is surprising for a start. Surely a Responsible Clinician would be the person to complete the Discharge Notice? The Discharge Notice was completed by BA who is a nurse under Home Treatment Team and who visited Elizabeth at her flat after discharge. Upon telephoning this morning I immediately felt as though others were shielding her when it became evident I wanted an explanation as to the real diagnosis. The Discharge Notice states:
Other abnormal findings on diagnostic imaging of central nervous system
Other and unspecified symptoms and signs involving cognitive functions and awareness
Other abnormal findings on diagnostic imaging of central nervous system
The above is stated under ICD10 Codes regarding Principal Diagnosis (on Discharge) and ICD10 Codes Care Cluster.
This means that Elizabeth does not have a mental health diagnosis as Schizophrenia is F20. All the diagnoses are physical and physical ICD10 codes come FIRST as does primary care as opposed to secondary care. This is all mentioned in the DSM. This is the most significant report and most accurate I have ever come across under Barnet Enfield and Haringey MH Trust.
Elizabeth’s GP had tried to play things down and reassure me that she had spoken to the Responsible Clinician of Suffolk Ward and mentioned the ICD10 codes were erroneous and recorded by an administration clerk. I got the impression the codes were entered by BA, a qualified nurse under Crisis/Home Treatment Team but to even get to speak with her I had to go through an astonishing barrier.
I was told that this person did not work there but I insisted that more than one person told me to the contrary and I had contacted Healthwatch Enfield. I was then given another number to phone which led me to Enfield Community Treatment Team who are not whom I wanted to speak to. I was then given – 0800 151 0023. When I phoned I was told that BA was working from home. Eventually, I was put through to BA which was a relief. BA thought I was complaining about her decision making to discharge Elizabeth but I was not complaining about that at all. In any case it would have been the RC of Suffolk Ward’s responsibility to discharge Elizabeth and who surely should have completed the discharge notice. BA then explained she could not discuss the diagnosis with me due to confidentiality. I told BA that I was next of kin, a McKenzie Friend and had Power of Attorney. Despite this, BA would not reveal any information but because I persisted I finally got another name out of her – namely RB, her Boss. Before I ended the call I commented that Elizabeth, who now had only physical health conditions relating to central nervous system should not in fact be under the mental health team at all but under a team specialising in neurological conditions. All the community MH team are doing is administering Clopixol Depot fortnightly (Enfield Community Rehab Team) so why cant this be done through another avenue.
I have yet to speak to RB but will have to go through all this rigmarole again and I do not have hours to spend today. I definitely wish to speak to RB at some stage as I am trying to find out what the real diagnosis is. I will make sure I am with Elizabeth so there are no excuses not to answer our questions ie which central nervous condition does Elizabeth have?
In addition to trying to sort my car/insurance out I have had to organise a wheelchair for Elizabeth as I am now without a car. I have to walk to Elizabeth’s flat which is time consuming, carrying heavy shopping is a problem because I have weakness in my arms due to having had a stroke. It is not just the inconvenience you are then faced with lack of communication from professionals who ignore you, treating you as though you are invisible. The fact is I would not have a complaint if communication was good or even if something went wrong but what the NHS does is cover things up. Staff stick together protecting one another, whereas if they were honest I would not have a single complaint. If they are trying to protect their jobs, this could be because the NHS is rife with bullying, not just towards me as a carer but towards their own staff. Previously I remember a Registered MH nurse during the time Clozapine was deprived for four days stating that it was more than his job was worth to give me the medication I needed to stop Elizabeth from going into cold turkey withdrawal. This was when the team wanted to force return her back into care rated good by the CQC, whose inspector sympathised with the team. I have it all in records but now I am faced with this current situation of trying to get to the bottom of the truth and encountering such protection from colleagues towards one another making matters near impossible whilst they play on confidentiality, dismissing Power of Attorney again and again.
I have not been able to clarify the real diagnosis but am aware Elizabeth did have a scan about year ago prior to her admission to Chase Farm Hospital Enfield. We are still awaiting the CTR minutes which NAS is escalating.
I then had to ring Elizabeth’s GP surgery. I was told by Elizabeth she had received a text message to make a health check appointment but no-one had told me. Elizabeth requested me to make the call and now she has an appointment at 2.30 tomorrow with a doctor I had not heard of before. I pointed out that I could only bring Elizabeth if the wheelchair had arrived tomorrow morning.
As featured in my last blog on top of everything else I am having to deal with the above.
Today I spent a very long time phoning Police to get a crime reference number as well as for an update. No update could be given as the adviser could not access the notes but I obtained the crime reference number. I then received a call from Mr Clutch who have gone out of their way to try to obtain the very best price for both catalytic converter and exhaust. Having tried over four sources they were told only a BMW dealership could help and received a rip-off price from Stephen James for £3000. After negotiation Stephen James reduced this price to £2,300. I find this price drop quite amazing and still think this is a rip-off price.
I now have loads of inconvenience thanks to these thieves as I have to turn my attention to my insurance as well as to Elizabeth as I relied on my car to get from A – B.
I have had to shop around and I have managed to get a better quote for £1400. I have then had to put in a claim through my insurance.
Tomorrow a wheelchair is coming for Elizabeth because she has an appointment with her GP Surgery who once again have only notified Elizabeth and treat carers like nothing. If it was not for Elizabeth I would not have known but when I spoke to the reception I had to clarify when the word “mental health” was mentioned. It was really upsetting to me to hear these words mentioned and I then asked if the doctor concerned, Dr D was a psychiatrist as I have heard of GP’s doubling up as psychiatrists before. I needed reassurance that this was not the case and this was not done as a MH assessment and some kind of trick. Elizabeth has not long since had a health check and that is why I was concerned. The GP surgery is now taking an interest but have tried to play down what is written on the discharge note and today I made some enquiries. I will write this on a separate blog including Elizabeth’s very own comments that she had written on a piece of paper. I will add to my comments on the BMW car in due course but at the moment it is with Mr Clutch who did try their best to get a reasonable price but in the end the prices were still too high at £2,300 for just the exhaust.
The GP surgery is the same that Elizabeth has been under since she was born.
The GP surgery is divided into two. Front entrance is for covid vaccinations, very busy with people queuing and the back, for appointments and reception. All appointments have to be made on line or by telephone. It is not always possible to access internet or even get to speak to a GP when you call. I was told last week I should call at 8.00 am as I was too late for an appointment by midday but I was impressed with the receptionist I chatted to who seemed to understand fully Power of Attorney, unlike so many professionals including doctors. In terms of communication when I explained I often felt ignored, disregarded and treated like I was invisible by the surgery it was nice to hear that it was wrong to dismiss POA for Health and Welfare especially when Elizabeth needed help not only to make appointments but to attend them as she has come out from a year’s incarceration under MH more disabled than ever.
Today I phoned the GP surgery at 8.00 am and was No. 25 in the queue. I waited patiently for a long time until finally I spoke to a receptionist. I requested a telephone appointment with Elizabeth’s Doctor and gave my mobile number. I was told it would not be possible to speak to Elizabeth’s doctor as she was fully booked but another doctor instead.
After this, I tried to enquire about Elizabeth’s benefits and spent more time on the phone to DWP. Absolutely noone has tried to help with her benefits since PIP stops when someone goes into hospital but Elizabeth was discharged on 28 May and not so long ago her entire benefits stopped due to error by someone under DWP. Good job I noticed and thankfully Power of Attorney over finances was not dismissed like the one for Healthcare with the excuse that this is only effective when no capacity and thankfully I was able to deal with matters. To think that Elizabeth once was working. Had she been given the right kind of support instead of mountains of mind altering drugs she might not be in this position to this day.
It just so happens that it is has been recorded in the GP’s records about loss of capacity as the surgery obtained advice from an organisation called MDDUS regarding what to write in a letter excusing non release of medical records on the basis that Elizabeth had no capacity – I could not believe it when I saw this in the files however this would mean for sure that the surgery should deal with me as POA, especially since it was Elizabeth’s request under GDPR Rules to have sight of her medical files which are still awaited. It makes you wonder what there is to hide in such files, especially when I have read the discharge notice and other disturbing things.
The hospital discharge notice is not signed by the Responsible Clinician from Suffolk Ward Dr HM but upon enquiries today I have found out this has been produced by a doctor (Dr BA) from the Home Treatment Team under Chase Farm Hospital Enfield. There is not one mention of mental health disorders. Schizophrenia is, for instance F20, but only physical health ICD10 is mentioned. I wanted clarification from the GP as to what was the real diagnosis for Elizabeth and so did she. I also wanted to speak to the Practice Manager who has not phoned me back on two occasions.
Anyway, getting back to the GP, I had noticed a text message on my phone stating that she had phoned Elizabeth. I specifically wanted to speak to the GP myself to clarify the above and to inform her of recent updates in terms of appointments that I had made but only thanks to Elizabeth informing me of text messages she had received herself. So from this, you can gather that Elizabeth does not mind sharing information with me and in fact found it far too stressful to deal with making the appointments herself holding on the phone for ages going through different options.
I then had to phone the GP surgery again and this time, I was this time No. 9 in the queue. Elizabeth had spent most of the day lying in bed exhausted. She is on a high dosage of Clopixol depot that just makes her so tired and incapable of doing anything much. I have never seen Elizabeth so drugged up and sedated and question how this could possibly be doing her any good. I was advised that the Consultant Psychiatrist would be taking her off the drug but here are the side effects of Clopixol Depot and there is no guarantee he will take her off it as it is subject to six weekly reviews apparently.
Here are the Clopixol Depot withdrawal symptoms:
Nausea, anorexia, diarrhoea, rhinorrhoea, sweating, myalgiass, paraesthesiass, insomnia, restlessness, anxiety and agitation. Rare side effects are slow heartbeat and abnormal ECG heart tracing. Life threatening irregular heart beats.
Elizabeth has already been recorded as being of “high risk of mortality and high risk of choking”. What kind of Dr puts someone who is a poor/non metaboliser on such a high dosage. 400mg is maximum and they have entirely ignored the fact that in the files it already states that there is an irregular heart beat and she is treatment resistant. There is definitely something wrong with her breathing. This probably all been covered up if she had been sent away to the Priory for another six months. Thankfully, Mencap, NAS and Access put a stop to this but where are the CTR minutes? That is a very good question after all this time they are nowhere to be seen. I wish I had taken the minutes instead as these would have been immediately ready.
After I finally got through to the receptionist I explained that I was not at all happy as I had spent so much time on the phone this morning out of concern for Elizabeth’s wellbeing. Elizabeth’s phone was practically dead but I got to hear that the GP had phoned Elizabeth excluding me, when I needed to speak to her myself. I then finally received a call from the GP but only after I had made a fuss about this. The GP insisted she speak to Elizabeth first to ask if it was OK to talk to me. I found this astonishing as I am the one who needs to know about appointments in order to be able to take her to them as Elizabeth can barely walk. So I explained I had Power of Attorney and was told that this did not count because every time the GP would need to gain Elizabeth’s permission before speaking to me, despite the advice from MDDUS to say she had no capacity. Elizabeth gave her permission to the GP to speak to me and then the GP spoke to me briefly and I told her that I was concerned about Elizabeth’s breathing and what was written on the Discharge Notice. The GP was dismissive about the diagnostic findings written on the discharge notice ie “abnormal findings on diagnostic imaging of central nervous system”. This was trivualised by her stating this was entered by a administration staff in other words, hence of no consequence. The GP further tried to reassure that she had checked with Dr HM (RC) of Suffolk Ward. I then went on to say that this discharge notice had a doctor’s name (Dr BA from the Home Treatment Team) on it as well as the care coordinator from Enfield Community Rehab Team (PM). Under Allergy – absolutely nothing written. Under Carer’s contact (unavailable Data). The abnormal findings on diagnostic imaging is not just mentioned once but twice. There is absolutely nothing under mental health re ICD10 codes and that is because under the DSM, primary care diagnoses come first. When I checked with Elizabeth she did remember having a scan so such comments should never be dismissed in my opinion. Elizabeth was discharged to her independent flat on 28 May and referred to Enfield Crisis Resolution and Home Treatment Team so how comes this discharge note was prepared by Dr BA of the Home Treatment Team when Dr HM was the Responsible Clinician from Suffolk Ward and I had requested the discharge note many times. The discharge note was dated 05 June but the referral date is noted to be 24 May 2021.
It is stated “future management by GP and Enfield Community Rehab Team” but surely this should only be the GP because no mental health diagnosis is mentioned on the discharge notice so what is Elizabeth doing under a MH team?
I spoke to the GP about my concerns that I was not informed about the most recent referrals for ECGs and blood test. If it was not for Elizabeth I would not have been informed at all and been able to make the appointments. To top it all , Elizabeth received two calls from Enfield Community Rehab team about another appointment which I would not have known about otherwise. Sometimes Elizabeth forgets to tell me immediately when this could have all been arranged sooner.
Because Elizabeth is disabled and unable to communicate effectively over the phone – for instance she gave up when she tried to make an appointment herself and became stressed out by the lengthy wait and she would also would need taking to such appointments. It is a great pity that there is not better communication. Her care coordinator has commented on Elizabeth’s breathing and we have all noticed there is something very wrong but this is not surprising when certain doctors have not shown any regard for her physical health or the fact she cannot metabolise the drugs according to the P450 liver enzyme tests and they have prescribed at maximum levels – it is no wonder therefore Elizabeth’s physical health has been damaged and she has suffered injury.
I was not in the slightest bit reassured by the GP trying to brush aside the comments on the discharge note as though they were of no significance. On the contrary, when files are refused under GDPR Rules, it makes me all the more curious to know exactly what is meant by “abnormal findings on diagnostic imaging of central nervous system”.
The appointments for ECG have been made and diarised plus the blood test but this seems to be a duplicate. Elizabeth was prescribed Folate Acid but this made her very ill but what about B12. The other blood test is for Folate Acid and B12 but B12 has not even been prescribed.
The GP wanted to speak to Elizabeth and asked how she felt to which she replied “not good”. The GP discussed about weight gain. Again I pointed out that this was due to the drugs prescribed as well as underlying physical conditions such as PCOS and it could even be thyroid.
I mentioned that Elizabeth had to frequently rest during the day and had no energy whatsoever. I questioned her current treatment to which she said she would speak to the MH team. I then said what is Elizabeth doing under a MH team when she has all physical health conditions? When someone has a neurological condition they should not come under a MH team and I had written to JR, Commissioner of North Central London CCG because I thought Elizabeth should be under “Headways” who are brain injury specialists. The GP said she was referring Elizabeth to a Neurologist. The last time Elizabeth saw a Neurologist was back in 2014 when he saw signs of TD (tardive dyskinesia) and commented she would be better off all psychiatric drugs altogether. He mentioned about a referral to a geneticist and so I mentioned about a referral to Dr Hakin, not only a Geneticist but Rheumatologist and this would be appropriate because Elizabeth has complained of chronic pain and this could be rheumatoid arthritis. Whilst I am not a doctor I am a witness to Elizabeth’s pain discomfort which has been ongoing for far too long without investigation.
Elizabeth was also a frequent visitor to the GP and calling ambulances and Police because she was suffering from chronic pain but nothing was done about it up until now that I have obtained the most disturbing current files and read the discharge notice.
As I am writing more drama which I could well do without. I have had to shout out of the window and run downstairs to confront thieves trying to steal the catalytic converter of my BMW car. Unfortunately, I was too late to confront them and I have just had a visit from Police to whom I reported that there had been a spate of such thefts along my road. I only wish I had got outside sooner but I did get a good look at one of the men concerned who was not wearing any face covering I could most probably identify him and hopefully one of my neighbours had captured some footage on his CCTV.
I have spent the day helping Elizabeth in the flat and most of the day on the phone. The benefit system is at breaking point. For instance, once paperwork has been received, the DWP refer things to a private company for assessment. I telephoned this private company and they have a backlog going back to February would you believe. I mentioned my concerns regarding a telephone assessment because Elizabeth, who has autism, is unable to communicate well in phone calls but was told that not all cases were referred to see an assessor so we will have to wait and see.
Elizabeth has phoned me many times this evening out of concern when she heard about my car. Quite often she will show concern for the wellbeing of others and especially animals.
I have enjoyed listening into a zoom meeting by “Stronger Together” and there were some very inspiring carers and people of experience speaking. Unfortunately I could not listen in all day and hope that I can do so at a later stage as it was all being recorded. I am going to ask as I would like to share this if this is at all possible. I know that Elizabeth would have benefitted by listening in to some of the wonderful speakers.
Yesterday was a very special occasion which went well despite the not such good weather but it was touch and go whether Elizabeth would attend. Any events such as this are a complete ordeal for Elizabeth now whereas once it was not a problem.
The wedding was not a lengthy church wedding but a Registry Office service booked in a library setting. Only two witnesses were allowed and there was a very strict policy of wearing masks. A limo took us there in style and it was the first time Elizabeth had travelled like this. Just myself and Elizabeth were witnesses and after that photographs were taken in a nice park location prior to the venue which was a local pub. The official occasion was followed by a very small reception as many people could not attend the main reception arranged in August. Elizabeth looked nice for this occasion and had her hair and makeup done. The main reception later on in the year is to be held on a yacht in Gibraltar but Elizabeth has refused to go to this and is not well enough. I may have to to come straight back to the UK afterwards.
Elizabeth’s sister wore a white wedding dress but this is not her main wedding dress. We stayed overnight in a hotel nearby as ceremony was early the next morning.
Elizabeth had the depot injection the day before and I was worried about how she would be afterwards. This “medication” does nothing for Elizabeth and is administered by a psychiatrist and nurse who visit her flat fortnightly. She is on a high dosage which was 400mg but has been reduced to 350mg. I thought there would be a further reduction of 50mg down to 300mg but the RC Dr IM from Enfield Community Rehab refused to reduce it any further and we were told that it will remain at 350mg pending a review which would take place every six weeks. There is nothing in writing to confirm this or any guarantee that there will in fact be a further reduction but just a review. Meanwhile Elizabeth’s breathing is really bad and very noticeable whilst we were away and I stayed with her in the hotel room. Various tests are being carried out by the GP but I fear too late. Elizabeth was admitted to hospital in the first place following a visit to her GP surgery when she became distressed as she thought they were ignoring her but it was the height of the lockdown and everything had come to a standstill. However leading up to all this Elizabeth was constantly calling into her GP and phoning ambulance services complaining of chronic pain. Noone took any notice and it is only now the GP is taking things seriously as according to the Discharge Notice there is nothing but physical health concerns noted. I feel that there is something seriously wrong with Elizabeth and it is no wonder as I have acquired the latest files which indicate what disturbing treatment Elizabeth has had over the past year.
The discharge notice was clear in stating “abnormal findings on diagnostic imaging of central nervous system and other and unspecified symptoms and signs involving cognitive functions and awareness. No-one has yet explained what this means. The GP was not sure herself and was going to check but has not got back to us with her confirmation. Dr Beatrice Awudu was the clinician who produced the Discharge note from Barnet Enfield and Haringey MH Trust. Having looked up central nervous system conditions I sent an email to Dr IM of Enfield Community Rehab Team and Dr HM of Suffolk Ward as well as the GP at Carlton House Surgery Enfield but have received no response or clarification as to the above comments and when this was in fact discovered and how long such condition had been known. My question would be as to why Elizabeth is even under a MH team and bearing in mind physical health conditions she should therefore only be under her GP surely or another specialist team.
In my email I listed several conditions of the nervous system amongst which included Parkinsons and MS and I then enquired as to what the correct diagnosis is now for Elizabeth. So far it has proven impossible to find out as noone is responding. The GP only seems to respond to Elizabeth yet I am the one who has to take her to the blood tests and various other appointments. If it was not for Elizabeth sharing information and informing me I would never have known about any of these tests or appointments and I see this as bad communication because now her physical health has been compromised. Because Elizabeth has informed me I have now been able to arrange appointments for two Echocardiograms at two different clinics. One is for US Transthoracic Echocardiogram, the other is for an ECG 12L. In addition another blood test for B12 and Folate Acid but the latter has just been prescribed which had terrible effect on Elizabeth.
Surely under the Informed Consent Act Elizabeth would be entitled to know all about how the reduction off Clopizol Depot will be carried out. I realise that such reductions should be done very slowly but find myself questioning whether 50mg is too steep a reduction. Elizabeth has only had mild symptoms of withdrawal – no different from what she was suffering prior to this. If no reduction is done in six weeks I will most certainly be questioning matters bearing in mind the concerning physical health condition relating to central nervous system.
In the meantime I will look up prescribing guides in this respect. The depot injection is extremely distressing for Elizabeth and I would question why all these doctors who have been involved over the past year have ignored allergy to Risperidone as well as prescribed maximum dosage when they were made aware Elizabeth is a poor/non metaboliser. It would seem that such doctors do not care about any consequences in respect of decline to physical health. I would further question as to how long these central nervous condition abnormalities became apparent Has from and did this injury occurred during the last year or prior. When institutions such as Elysium and Cygnet drug to enormous levels resulting in “Mews Score 2” and “of high risk of mortality and choking” this is why vulnerable people like Elizabeth die and it is not due to Covid but because of neglect in prescribing by teams of professionals whose doctors were responsible for dismissing the fact that Paliperidone (Risperidone depot) was previously found to be allergic to and the P450 liver enzyme test results and other private tests. They failed to check back in the files as it was recorded by Elysium there were no such allergies. The CQC SOAD also failed to take into consideration evidence which pointed to underlying physical health concerns. It is only now the GP is looking into matters but all too late. Elizabeth’s physical health has been neglected and there should have been such referrals in the first place especially Endocrinology and MRI.
Last of all, there is no sign after all this time of the CTR minutes. NAS are looking into this. These minutes should have been received two weeks after the CTR but it is much longer than that now and now things are being escalated to NHS England. Elizabeth has no care plan, no care in place whatsoever apart from the depot they are supposed to be reducing her off completely. I have had no care act assessment – the only assessment according to the files which was attempted back in 2014 was a mental health act assessment on me which is very disturbing. Luckily I did not go. Elizabeth has come out of NHS care completely disabled and dependent upon me and this has left me in a position where I have had to forget about working for the time being. It awaits to be seen whether permanent damage in terms of injury has been caused to Elizabeth. Whilst there is an abundance of money to spend on facilities there is nothing in the community but yet social services can spend a fortune on legal action against you taking you to County Court for displacement or Court of Protection as has been tried. When you try to find out information from this same team who are still involved in the “care” and only “care” of administering clopixol depot which does nothing for Elizabeth, it makes you wonder how this is allowed to go on. The money spent by Commissioners from North Central London goes on out of area facilities such as Priory, Huntercombe, Cygnet. You only have to look at the files to see how inadequate the local NHS wards are and that all they do is hold on to a patient and drug them before releasing them back into the community more disabled than ever. If they cannot manage a patient they send them away for punishment to the above private facilities and yet when there is sufficient doubt on diagnosis the commissioners refused a CTR until Mencap, NAS and Access got involved.
When you challenge the Trust and they have nothing to say, they call you a vexatious complainant and gang up against you. They give you one point of contact ie Pals but I also was given the Manager of Enfield Community Rehab Team. There was a long list of nasty comments against me by those at the very top of the Trust and it is when you encounter such defence and wall of silence that you know they have plenty to cover up.
I have turned to NHS Resolution in respect of the £100 of items that have gone missing from the ward, a second unlawful detention and now evidence of serious physical health concerns. They have appointed Weightmans Solicitors and outlined that the last time £1 compensation was awarded because of the Bostridge case so I pointed out that this time the unlawful detention was longer but in addition the missing items plus serious physical health concerns should be taken into account. So far absolutely nothing but a wall of silence by the NHS (Barnet Enfield and Haringey MH Trust who have provided in one year:
Ruby Ward St Pancreas PICU
Seclusion – Chase Farm Hospital Enfield
Cygnet Godden Green – now shut down (Required Improvement)
Seclusion -Chase Farm Hospital Enfield
Elysium Thornford Park Thatcham Berks – two months of hell where they drugged to the hilt and gave face down restraint.
It would seem that the night bed management alongside nurses from Suffolk Ward only wanted to be rid of Elizabeth and gave no consideration towards her or her family in the location of facilities only in respect of whether these facilities could accommodate further punishment by way of seclusion. This callous attitude extended to Xmas Day when a bed had been found at the Priory Darlington.
Not one of these locked facilities have done anything whatsoever to help Elizabeth get better. Sending her away time and time again in just a short space of time has been damaging to Elizabeth and her family.
This morning, I decided to visit Suffolk Ward, Chase Farm Hospital Enfield, to find out whether Elizabeth’s possessions had been found and, if not, sort out reimbursement to the value of circa £100, which included Birthday presents going back to February 2021, including M&S leggings and top. These items valued at around £35 were never replaced and the Deputy Ward Manager who took the receipts never got back to me. Also a brand new tuppaware container containing the Birthday cake went missing. Whilst not much money, it is a matter of principle. Elizabeth has recently been discharged from Chase Farm Hospital, Suffolk Ward and several more items of possessions have gone missing ie., black and white Morrisons jacket, new pair of Sainsbury’s sandals and a pair of mock sheepskin slippers. Also, when Elizabeth was chased around the room by four male “nurses” she did not recognise and dragged into a seclusion room to be injected, during this scuffle her handbag was broken and I am requesting this to be replaced too; it was ripped off her shoulders and during all of this she lashed out with her feet and was kicked in the leg in retaliation by a male member of staff. I am sure the Morrisons jacket was more expensive but when I found out the price recently it had gone down to just £12 so with these items plus the Birthday presents everything amounts to around £100.
I was advised by the new Manager of Suffolk Ward (KS) that everything was in Pal’s hands so I decided to visit the office of Pals who said they had received absolutely nothing in terms of paperwork. I was advised to call at the ward which I did. I was told the Manager was coming first of all. I stood there patiently for a very long time and then was told again that the Manager was coming. I waited again for a very long time then a male nurse came to the door and offered to take the receipts off me but I then said that not only did I wish to give the receipts but I also wanted to discuss the Discharge Notice Elizabeth has just passed to me. It must have been about an hour I patiently waited in total and this male nurse disappeared but it was obvious that no-one was going to come out. I then called at reception and asked to speak to someone more senior. I was told to wait in the foyer which I did and all the time Elizabeth was phoning to see where I was as she was waiting for me at her flat. Then I noticed the person coming towards me was someone who is described in her previous response letter to Elizabeth’s complaint as “Covering for Suffolk Team Manager” JA. I had previously had contact with JA but was unsure of her title. Anyway, JA’s response was typical in terms of being defensive when challenged of anything wrong and I was not impressed with her response to Elizabeth’s complaint as I had nothing to do with this. In my opinion it takes guts for a patient to voice their concerns which I will outline in this blog. When I complained to JA that £100 of items went missing she was unsympathetic stating that it is a patient’s responsibility to look after their possessions on the ward. I responded that this was highly unsatisfactory since when things had gone missing on other wards such as Huntercombe and Cygnet, items had been reimbursed so I did not see why Suffolk Ward should viewed as a special case. She repeated it was a patient’s responsibility to look after their possessions. I said “easier said than done” when a patient such as Elizabeth was drugged to the hilt like a zombie and had found patients entering her room late at night on more than one occasion. I also questioned as to what Elizabeth was doing on their MH acute ward as she had autism to which JA responded that none of the patients on Suffolk Ward had anything other than a mental health diagnosis to which I said “rubbish” and showed her the 24 Hour Discharge Notification with ICD10 codes purely on physical health only. I also pointed out that Mencap/NAS and Access would not have got involved had I not been able to produce substantial evidence from the very beginning and referred to substantial divide in opinion by other professionals. She pointed out that the ICD10 code was for mental illness ie Elizabeth is said to have paranoid schizophrenia for which the team have refused to budge, however I have looked up ICD10 and this is what I have found:
ICD-10 is the 10th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD), a medical classification list by the World Health Organization (WHO). It contains codes for diseases, signs and symptoms, abnormal findings, complaints, social circumstances, and external causes of injury or diseases. Work on ICD-10 began in 19…
This is the first time ever I have come across a list of physical health conditions such as:
Other abnormal findings on diagnostic imaging of central nervous system
Other and unspecified symptoms and signs involving cognitive functions and awareness
I am not a doctor or nurse but this reads to me as though Elizabeth has suffered injury in the course of one year’s incarceration where she has been drugged to the hilt on drugs previously found to be allergic to by several doctors and the depot version of Risperidone administered now switched to max level of Clopixol depot for which it has been promised regular reductions and titration right down. The Community RC explained that a reduction of the max level of Clopixol would commence at the next due depot injection which Elizabeth says is due on Monday and the first reduction is 50mg but this sounds quite high to me. Previous attempts at reduction have been too steep/cold turkey and had failed but this was recorded as relapse of mental illness, whereas it was withdrawal syndrome. This time the community RC explained that care would need to be taken on the very low dosage and that this could cause delusions/hallucinations – all the symptoms said to be of mental disorder when in fact these are the side effects of withdrawal. He also said he would have to increase his visits to see Elizabeth but this alone might be triggering for her as even a phone call from the MH team affects Elizabeth’s mood and puts her on edge.
JA could not explain re the Discharge Notice and said she was not a medical professional but KS new manager of Suffolk Ward is a medical professional who did not wish to come out and see me.
Since being discharged from Suffolk Ward Elizabeth is looking better but her breathing is of great concern. Never before was she like this. I know something is wrong and I am not even a nurse/doctor.
Elizabeth has had a chest Xray which I took her to. She has a blood test coming up and eye appointment, all of which I have to take her to. She says she has blurred vision and balance problems, that she has chest pains and headaches. She can barely walk.
Today I decided to ring Elizabeth’s GP to ask for a Neurologist appointment. The GP said she had to justify this appointment so I told her that I had the discharge papers that highlighted what appeared to be physical health concerns under ICD10. I also said that last time Elizabeth saw a Neurologist the Neurologist suggested genetic tests for rare condition of Wilsons Disease and that nothing should be ruled out as it says in the files “Lets rule out anything organic” but now I want everything organic looked at properly including the MRI scan Elizabeth wanted in the first place. The GP did not understand about the Discharge Notice contents and said before any referral could be made to see a Neurologist she needed to find out more about the things listed as the tick boxing had to be done very carefully otherwise the request would be rejected.
Elizabeth telephoned frequently to see where I was and I was mainly stuck at Chase Farm Hospital waiting in vain.
I have the letter in response to Elizabeth’s complaint by JA in front of me. To summarise:
You reported that nobody has explained to you why you are sectioned as you do not believe you are mentally ill. JA responded listing Tribunal’s decision going back to 2008, mentioning CTO and section 136 and that everything was explained to her. “I am sorry you do not believe you have a mental illness but would like to assure you that the correct process have been followed.“I am sorry that you do not believe that Elizabeth has been misdiagnosed as otherwise the wonderful organisations of Mencap/NAS and Access otherwise would not have got involved and as for the recent discharge note it would appear that Elizabeth has suffered injury and would assure you that there was nomention of mental disorder whatsoever – the first time this has ever been seen.
You told us that we have informed you that we are sending you to another hospital and you do not know why and you think that we may be waiting for a bed: “The team has a conversation with you in January 2021 that they were considering longer term placement as part of your care plan ie Priory placement. I hope that following this meeting you now are up to date with any plans for ;you to move. Likewise thanks to NAS and Access thank God stopping another six month OOA placement at Priory. Yes, definitely Elizabeth was right as per the latest files. For instance beds in hospitals all over the country were being considered where seclusion was the option, hence Cygnet Godden Green (Requires improvement) now closed by CQCwho agreed to take Elizabeth for 5 weeks.
In addition to all of these above, Priory Darlington, Priory Hemel Hempstead, Elysium locked Rehab Bromley Road, Elysium Thornford Park (2 months) St Pancreas Hospital Ruby Ward.
You stated that the office staff (Suffolk Ward) keep telling you to speak to Dr HM but she does not listen and does not give any information: “On Suffolk Ward we empower patients to have discussion with their consultant if the information they are asking for is not within the remit of the nurses. We encourage patients to speak for themselves during their meeting with the consultant or other ward doctors. Nurses prompt patients during this meting if they are having difficulties to express themselves or have forgotten the points they wanted to raise at their meetings. This is the reason the staff were encouraging you to speak to Dr HM. An example of such discussion is “you have got paranoid schizophrenia” “no I have autism”
You reported that you were taken to seclusion when during your admission about a year ago your bag was ripped off and the manager kicked you in the leg. “I am sorry but I have been unable to find any evidence in your record to suggest that this incident took place. However on 29 July 2020 you were reported to have lashed out at staff, kicking the ward manager in the groin and punching female staff repeatedly. ” I am sorry but what we have heard is that Elizabeth was chased around the ward by several nurses she had not seen before who got hold of her and got her in some kind of seclusion room to give the depot to which Elizabeth did lash out but there were no female members of staff present – all male and her bag got ripped off her shoulder in the process and she got kicked in the knee. She did not punch female staff repeatedly as what we heard was there were only male staff present.
You stated that your mother could not see you because of breach of social distancing on Xmas Day. Your mother reported there has been Covid 19 on the ward but no communication and wanted you to be treated fairly. Elizabeth’s mother’s blog describes the shocking experience on Xmas Day and how her car was surrounded by staff threatening to call Police which they did do despite the fact that permission had been given by the RC but the bed management overrode that decision and that was because it was proposed to move Elizabeth that day, due to the ward being changed to Amber category.
JA then talked about the CTR (which was cancelled 3X due to a completely independent and person of experience being appointed by NAS who were not happy at the lack of support for Elizabeth leading up to this meeting by advocacy, minutes of the CTR still awaited.
JA then explains re S17 that they were unable to grant this on the grounds of Covid 19 other than to attend urgent physical health appointments. This rule was explained to you and your mother. It certainly was not explained to me at the time but I found out.
You reported that you have not been treated fairly and we are trying to treat you for schizophrenia when you have autism. Your records show you have been receiving treatment for paranoid schizophrenia since 2008. You also have diagnosis of Asperger Syndrome since 2016. You are administered Clopixol 400mg depot injection (intramuscular) every 2 weeks as part of your treatment for schizophrenia. We would like to know the aspect to which you reported that we have not treated you fairly so that we can improve the care and support we provide you. Since you ask, you recognise the diagnosis of Asperger Syndrome was given since 2016 (in fact it was given in 2008 also) so how come the change to schizophrenia and where is the term “treatment resistance” meaning poor / non metaboliser. You only have to look at the treatment over the past year and see how many institutions were being considered out of area at huge expense by various nursing staff/night bed management. You only have to read the latest file records of which Elizabeth’s mother has acquired in which she herself was being labelled behind her back with a MH diagnosis by a junior doctor who has never met her.Then you only have to look at how the CTR was handled and cancelled three times with the Chair stating “the whole thing stinks”. Then take a look at the discharge to her flat – nothing apart from Crisis/Home Treatment Team phoning every other day and totally disabled. Elizabeth cannot get in and out of her small bath. She has no shower. So disabled now I am a full time carer, not able to work in a full time job right at this moment or in fact any job other than caring. Elizabeth has breathing difficulties like never before has to rest several times during the day and has no energy to do anything that is because she is on max levels of the drug Clopixol which the community RC is taking her off having been alerted to the fact Elizabeth’s mother has the Discharge Notice that states physical health concerns.
Finally JA goes on to say “I hope we have addressed your concerns. If you feel that there are any outstanding issues you can contact me on ………….”
I told JA what I thought of her letter today and will finalise my blog by replying to the above comments stating “no” and “yes” – there is the issue of £100 of Elizabeth’s missing possessions and then Elizabeth’s mother wants full clarification as to what exactly is meant on the Discharge Summary by “Abnormal findings on diagnostic imaging of central nervous system” – Please explain.