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 the generation 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 but abnormal protein deposits in the brain, environmental or genetic factors are some suspected causes. Alzheimer’s disease 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.