Ive been at Chase Farm Hospital Enfield most of the day waiting for news as none of us in the family can get through to Elizabeth who is without her phone and held in seclusion in the 136 ward whilst on Section 2.
Elizabeth was upset when she called into the GP surgery. There has been dispute between the GP Surgery (Carlton House) and Enfield CCG about funding for an MRI scan. Elizabeth has been complaining of chronic pain not surprisingly when you have been put on massive dosage of drugs and 2 x bnf levels for instance at the Royal Bethlem Hospital as documented in the files.
Not only should an MRI scan be done but also Endocrinology and ECG and this is the responsibility of the GP but when someone is autistic defined as LD such vulnerable patients get ignored and this is what has happened so I had to get involved. Same old story about confidentiality and I have POA too but no one would speak to me but I did get to hear that it was not the GP surgery but Enfield CCG who had refused the funding. Then Enfield CCG said it was not them but the GP Surgery so I have had to write to everyone about this important matter as the correct ward is a brain injury ward in order that all the correct assessments can be made and at the same time checks on the endocrine disorder that I have proven.
So I found out she was put on a mixed ward which was a big mistake and I said so but no one listened then left on the Section 136 ward in seclusion so today I have been up with some clothes and a phone charger and some food but none of us have been able to speak to Elizabeth to see how she is.
The little ward for brain injury trauma would have been the correct ward at Edgware for her to be assessed but now I have heard ENFIELD MH are looking for a PICU bed and this is not good. Could be far away and I am not well and now I will have to travel a long distance.
No visitors are allowed on the ward and I did not see staff dressed in PPE yet the procedure should be that someone is tested for Covid 19 and put in isolation for between 24 – 48 hours which is fair enough but what if that person has got Covid 19 and none of the staff are wearing any protective clothing. They might have a flimsy mask or gloves but not PPE. I am extremely worried as they want to send her a long distance away. The furthest she has been sent is Wales to Cambian and none of these private institutions have offered the right kind of care. At Huntercombe she was so drugged up she could barely stand or see. She spent most of the time asleep which I suppose is convenient to the staff. She was prescribed massive dosage of drugs they knew full well she was allergic to so it is no wonder why people die in these places so today I wrote the following email to the following:
———- Original Message ———-
From: Susan Bevis
To: firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, Jeremy Corbyn <email@example.com>, HSCCOM@parliament.uk, firstname.lastname@example.org, email@example.com, NPL.Consulting.Ltd@gmail.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, “KANDOLA, Jinjer (BARNET, ENFIELD AND HARINGEY MENTAL HEALTH NHS TRUST)” <email@example.com>, firstname.lastname@example.org, concerns <email@example.com>
Date: 14 May 2020 at 22:27
Subject: DEPRIVATION OF LIBERTY CHASE FARM HOSPITAL ENFIELD – ELIZABETH BEVIS
My daughter is stuck on a section 136 ward since 12 May 3.00 pm in seclusion not allowed a telephone and not allowed to go out for any exercise. None of us in the family can contact or speak to her to see if she is OK.
It seems like money is being put before the wellbeing of the most vulnerable people like my daughter in the UK when she has been refused an MRI scan and should have been checked with ECG and endocrinology and nothing has been done under Enfield.
Anterior Region Medial Temporol Compromise is NOT a mental illness it is a brain injury and I want my daughter placed on the correct ward – (nearest I believe is Edgware) so that she can have all the correct assessments done on her brain injury and whilst she is on a Section 2, thorough assessments should be done on her PHYSICAL HEALTH including Endocrine System. She has physical health problems that cannot be cured with antipsychotic drugs and is a poor/non metaboliser of the drugs so they do not work in any case.
I do not want to see her injury deteriorate further and would therefore like everything addressed in Parliament as to the Mental Health Act which is not fit for purpose and failing to protect vulnerable people like my daughtrer. Physical health must come first after all it is stated in the DSM.
In Norway they have got it right thanks to Professor Goetszche – no forced drugging of mental health patients. There needs to be better facilities – noisy/volatile wards are not the right place for my daughter to be sent to. There has been no care in the community because so much money is being wasted on private sector institutions such as Cygnet and Huntercombe even the RCs there agreed that this was the wrong environment and is costing the public £14000 per week when this should be spent on community care and improving the care under the NHS.
I am not supposed to be going out because I am regarded as being extremely vulnerable but have no choice as I might have to travel to visit the hospital wherever my daughter is sent even if it is hundreds of miles away- there are no decent facilities in the UK so at least please look into providing the right facilities to investigate the brain injury.
It is a really bad to put someone with LD/autism/PTSD and brain injury onto an acute or picu mental health institution and keep her like a punishment held in the Section 136 ward all this time. Then I heard she is being sent to a PICU ward and I am most upset about this. PICU wards have not helped in the past and has been a complete and utter waste of public money.
I would like something done urgently before my daughter is moved God knows where because this is affecting my health severely and I have had a stroke because of having to fight for the right kind of care in this country that should be treating people in a humane manner but this is not happening. She has been sent as far as Wales by the Royal Bethlem Hospital in the past.
I totally disagree with the email from Headway (Nora Brennan) – a brain injury such as detailed in a report going back to 2009 should NOT be dismissed and should be properly assessed not ignored. I feel my daughter is being discriminated against under the Equality Act as she has a brain injury. If the brain injury was discovered as far back as 2009 then why has my daughter been experimented on and given 2 x bnf levels of drugs at the Royal Bethlem Hospital National Psychosis Unit in 2012 where she contracted tachycardia on Clozapine? Doctors should do no harm and you need to look into some of the doctors who are prescribing dangerous levels of drugs to vulnerable patients and killing them – take a look at the attached example of polypharmacy and shocking degrading research on clozapine. There needs to be tighter guidelines on prescribing and accountability. When the GP and CCG do not wish to provide the assessments on physical health I am having to turn to everyone as this needs to be sorted out as my daughter visited countless times to Carlton House Surgery Enfield to ask for help as she was suffering from chronic pain. Also no way should she have been left in the community in a flat on her own without any support whatsoever. What is needed is more support in the community for vulnerable people, direct payments helped keep my father with Alzheimers out of home for years and this was refused by Enfield Community Rehab. Once again down to funding.
I look forward to hearing from you.
SUSAN A BEVIS – Mother, Nearest relative and McKenzie Friend
As I said in an email last August, Headway East London is commissioned by Enfield CCG to deliver the Enfield Brain Injury Service.
Under our contractual obligations with Enfield CCG we are limited by very strict criteria. In order to accept a referral we need documented evidence of an aquired brain injury. This must include scan results, date of injury, mechanism of injury eg: road traffic accident, assault. This can be a discharge report from acute admission following an injury or a therapy discharge report.
From: Susan Bevis
Sent: 11 May 2020 11:48
To: Nora Brennan <firstname.lastname@example.org>; email@example.com <firstname.lastname@example.org>
Cc: email@example.com <firstname.lastname@example.org>; NPL.Consulting.Ltd@gmail.com <NPL.Consulting.Ltd@gmail.com>
Subject: ANTERIOR REGION MEDIAL TEMPORAL COMPROMISE
Dear Ms Brennan
I refer to your email back in 13 June 2019 at 16:29 in which you stated“unfortunately Headway are unable to diagnose brain injury or influence any medical investigations.”You also went on to state “we are only able to accept referrals for those who have a confirmed diagnosis of brain injury and can provide evidence of this”.
I have had a chance to look extensively at the file records I have and check with Headway where I spoke to a former mental health nurse who confirmed to me that Anterior Region Medial Temporal Compromise is in fact a brain injury whereas my daughter has been treated for a mental health condition by maximum amounts of anti-psychotics 2 x bnf level when all along she had a brain injury.
I have had extensive Endocrinology tests done on my daughter Elizabeth Bevis to prove that she has PCOS and is insulin resistant. With a faulty endocrine system and being treatment resistant to anti-psychotic drugs the entire pituitary glands could be blocked and in addition cyst was discovered in an MRI scan and I am trying to get up to date scans done.
My daughter also has Neurology reports stating mild tardive dyskinesia as she was making sharp arm movements when she was walking.
She now has chronic physical health condition and suffering joint paints and has balance problems and this as affected her eyesight too.
I do not like the way my daughter has been dismissed or the way her physical health for many years has been ignored by doctors in favour of a mental health diagnosis that none of us can accept. I would appreciate your comments in this respect.
Attention of The Rt Hon Feryal Clark MP
Please can you help get the referral to brain injury specialists Headway along with the services of specially trained brain injury support workers in who can assist and communicate effectively with her to enable her to live independently within her own flat and wider community None of this is being provided under mental health services who are not specialists in brain injury. I think it needs to be recognised that there are many more people like my daughter under mental health services who need more specialist input and if hospital admissions are necessary, then this should be on a specialist ward for brain and trauma injury not an acute mental health ward where antipsychotics are given to suppress not cure the symptoms that are not of mental illness but of brain injury. After all, how can you treat a brain injury with anti-psychotic drugs?
I also feel that under the mental health, physical health is largely unexplored or ignored and not assessed properly and I am just a mother but have had extensive tests done privately to prove that there are underlying physical health conditions in this case and the diagnosis therefore can not be Schizophrenia.
It should be addressed in Parliament that vulnerable people who sustain injury or in Elizabeth’s case had a pre-existing injury identified from the beginning should have access to proper assessments before a mental health prognosis is given.
To Whom It May Concern – Carlton House Surgery
Please refer Miss Elizabeth Bevis to Headway brain injury specialists as, it is clearly mentioned in files going back to 2009 in the report by Dr Diana Caine UCL that she has Anterior Region Medial Temporal Compromise. In addition please refer her to an open scanner for MRI and to a Reproductive Endocrinologist specialist as recommended by Professor Hooper for the necessary check up on the PCOS already identified which should be done on an annual basis. Also she will need ECG tests due to tachycardia sustained through the titration of clozapine – the irregular heart beat should be monitored regularly. The Neurologist, Dr Kennedy also mentioned tests for Wilsons Disease but these were not done and should also include Ehlers Danloss Syndrome due to balance problems. Everything should be explored as after all, it is stated in the DSM that a mental health diagnosis should NOT come before any physical health condition or in cases of drug induced/withdrawal psychosis as was the case due to Prozac withdrawal cold turkey which was prescribed by Carlton House Surgery in the first instance.
Att: Sir Norman Lamb
As Chair of South London and Maudsley Foundation Trust I would comment on the fact that there needs to be much improvement at the National Psychosis Unit who prescribe drugs at 2 x BNF levels and did not carry out the drug free period of assessment recommended correctly and then sent Elizabeth to Wales where attempts were made to displace me as Nearest Relative and isolate Elizabeth from her family. This is supposed to be a world renowned hospital but I am afraid I have not got a good word to say and have all the files on this hospital that I would rate rock bottom. No contra indicated drugs should be given to treatment resistant patients like Elizabeth as I have proven that she cannot metabolise the drugs and what should have been done is extensive endocrinology tests which I paid for myself which revealed underlying physical health conditions.
What lengths do you have to go to in order to highlight what is wrong under the NHS in this Country. I could not see that staff were being protected and patients and as I sat there in the foyer nearly all day long requesting that Elizabeth be sent to a ward where they can investigate the brain injury and refer to other specialists only to hear she is being sent to a PICU ward which has already in the past been a complete waste of money and these wards isolate patients and they are put on high levels of drugs such as Huntercombe Roehampton – Every single drug has been tired on Elizabeth and Clozapine was one of the worse. To this email I attached an example of meds prescribed at Cygnet and horrific research on Clozapine that caused tachycardia and also the P450 liver enzyme tests that showed NON METABOLISER. Now that I have seen and studied the files going back to 2009 I want to know why Elizabeth’s physical health has been ignored and in addition why is everyone’s physical health being ignored under the mental health system especially when it is proven there are underlying physical health problems that the GP should have investigated.
ON two occasions now Elizabeth has been discharged from hospital to her flat where she lives independently but she had NO SUPPORT under ENFIELD. This is an area that have spent a fortune on legal action against me and now in despair I have had to contact everyone as when a vulnerable person goes time and time again to the GP and is calling ambulance and police out this person needs to have their PHYSICAL HEALTH investigated especially when they are complaining of chronic pain.
I would also like to see accountability in terms of prescribing because such drugs cause injury.
I feel Elizabeth has been discriminated against – to be told by a brain injury specialist that this is not the right kind of brain injury is not satisfactory. A brain injury is a brain injury and I have checked the condition Anterior Region Medial Temporal Compromise.
The care coordinator has sent me the following but I have responded with:
“I am sceptical about the brain study for a number of reasons. The cohort is not, as the article suggests matched to the control by the very presence of neuroleptics. In my school we would consider that a major confounder similar to the ADHD study done some years ago. Neuroleptics significantly alter brain function and the study has not properly accounted for that as a factor in the MRI results.
Brain scans are notoriously inaccurate in determining mental functionality. I was involved in a study like this some years ago where there was all an indication of ‘abnormal’ pre-frontal activity. It was totally inconclusive and a number of us considered the study itself unethical.
One of my students has just done a research project on how SSRI’s prescribed long term affect brain architecture. Long term use of neuroleptics alters brain function significantly. In short it would have been extremely unusual if the MRI scans of the cohort and the control matched. The age range of the patients (18-65) is far too broad and is again a major confounder in considering brain function. Some of those patients will have been on neuroleptics for decades including hideous drugs like Largactyl and Stelazine. Extrapyramidal side effects in that group would be highly pronounced and not in the control. Matching the images is therefore useless.
The study talks of impaired cognition in the patients in the cohort. The neuroleptics given over such a period would cause that just as acutely as any suggested lesion. Once again this means the control is not matched.
The Harrow study has carried out a proper comparison of cognitive function between patients with psychoses continually medicated and a properly matched control of those who had psychotic episodes but were not medicated. The cognitive function in the non medicated group was higher than that of long term medicated.
My overall assessment is the study is flawed in the absence of a proper evaluation of the confounders.
I, by the way do not consider the ‘diagnosis’ of schizophrenia to have any scientific merit at all and no longer classify patients with this label. ”
THE LABEL OF SCHIZOPHRENIA SHOULD THEREFORE BE ABOLISHED AND I have the most accurate report from Dr Bob Johnson (complex PTSD) Intensive trauma therapy required and then Dr Moncrieff suggested Endocrine tests so why aren’t these tests being given to all MH patients first before a mental health label is given that is highly inaccurate and damaging in that the treatment caused injury when there are underlying physical health problems. Why does autism now come under MH? Under MH there is not the specialist care needed for brain injury, LD or autism and this is where something needs to be done. If there is a shortage of beds under MH then Elizabeth could have been referred to the brain injury and trauma ward to have the referrals/assessments she requested which was not provided by her GP.
The MHA should be there to protect vulnerable people but vulnerable people are not being protected and their lives put at risk especially during this disturbing time and- every effort should be made to enable family contact which is not being done especially when you can no longer visit on the ward.
I will let you all know when or if I hear from any one of the above in this important matter that concerns so many under mental health. This is certainly a test to see who really cares about the weak and vulnerable in the UK and this goes to the CQC – this is not just an individual case to be investigated as many people are being affected especially those who lack communication skills because they have a brain injury.
email@example.com, firstname.lastname@example.org, email@example.com, Jeremy Corbyn <firstname.lastname@example.org>, HSCCOM@parliament.uk, email@example.com, firstname.lastname@example.org, NPL.Consulting.Ltd@gmail.com, email@example.com, firstname.lastname@example.org, email@example.com, “KANDOLA, Jinjer (BARNET, ENFIELD AND HARINGEY MENTAL HEALTH NHS TRUST)” <firstname.lastname@example.org>, email@example.com, concerns <firstname.lastname@example.org>