Lack of interest in pathological dysfunction is a blight on psychiatry and every reason why all psychiatric patients should have regular endocrine function tests and neurological scans for dysfunction in the amygdala hippocampus and pre-frontal cortex. It is blindingly obvious (except to many psychiatrists) re: precaution that pathological disorders should be screened for.

To rob a vulnerable person of fundamental rights as a person in effect turning her into an object rather than person.

Over zealous use of PRN and seclusion – human rights violation

To ignore underlying conditions and continue treating with antipsychotics

For a doctor to decline MRI scan when the discharge note points to all physical – “abnormal findings on scan pointing to CNS (central nervous system).

To ignore research that the doctor did on another patient who had the label of “schizophrenia” but all the time had inflammation of the brain and needed a different kind of treatment.

For any doctor to ignore endocrine disorders – especially in Elizabeth’s case when results indicate just that.

To ignore the P450 liver enzyme tests Elizabeth had done under Liverpool University

To raise the drugs to enormous levels and prescribe contra indicated drugs off label

For those significant number of patients who are non-metabolisers or poor metabolisers like Elizabeth this will cause wide variations in the effective dose of many drugs and some will not work at all.

There are many cases when psychosis is caused by endocrine problems. A defective thyroid and hypothalamus can manifest themselves in psychosis and the brain itself is a part of the endocrine system.

Hypothyroidism can result in dehydration and dehydration can cause brain inflammation, the very thing they will not test for.   

Today I wrote once again to the carer’s champion. I have been chasing the same thing for 19 months now: I wrote the following –

“as regards complaining to the Ward Manager and Pals all complaints have been shut down and matters are now with PHSO. I then asked the same questions as always. “there is something else wrong with my daughter. She has a Central Nervous System condition – could that be Parkinsons? No way should any MDT stand in the way of physical health pathology. I already have endocrine test results that state Elizabeth has an endocrine dysfunction yet consistently she has been deprived a scan since admission to Ash Villa. Elizabeth needs to see a specialist re Parkinsons to rule this out. There are also genetic tests that point to abnormalities too.

To say that a 2015 scan that came out normal will suffice is very wrong especially in light of the Discharge Note.

With the constant refusal of such tests I naturally feel they have something to hide. I hope I am wrong but the symptoms Elizabeth has displayed are as per below and she has balance problems.

I have offered to take Elizabeth myself to the scan as she is afraid of going under a scanner but what is so bad is that I am not sure whether it is the doctor or a team of others who are depriving Elizabeth of much needed pathological tests for their own convenience. It is highly negligent especially when I have the endocrine test results. It would seem that this, just like rapid tranquilisation is being done for their own convenience.

All of the symptoms below Elizabeth has displaced. The former area of Enfield produced a Discharge Note with no mention of mental illness/Code F20 schizophrenia and I have been met with a constant wall of silence every time I bring this subject up. In 19 months no endocrinologist referral or MRI scan by Ash Villa (run by LPFT).

What are the symptoms of Parkinson’s?

Common symptoms of Parkinson’s include:

• tremor
• rigidity (stiffness)
• slowness of movement
• mild memory and thinking problems
• sleep problems
• pain
• mental health problems, including anxiety and depression.

But not everyone gets these symptoms. People will have different experiences of how their condition changes or progresses. How Parkinson’s affects someone can change from day to day, and even from hour to hour.

You may hear Parkinson’s symptoms referred to as motor symptoms and non-motor symptoms. 

Motor symptoms affect your movement and balance. They include tremor, stiffness and slowness of movement. 

Non-motor symptoms affect you in other ways that may not be easily seen by other people. They include pain, sleep problems and mental health issues.

In an email to care coordinator MA copying in the Director of Psychosis I outline exactly how they operate:

From Johnson Norma

sent: 07 November 2012 10.23

cc Ahmed Monowara; Omezi Lucy cc Saunders Leigh

RE: REHAB PLACEMENT

Dear Monowara

I have no doubt that this patient would benefit from a hospital environment, if that is the desired plan from the MDT then what is required is that we need to demonstrate that the MDT has identified the exact needs and the expectation of what the MDT wants from a placement and the timescales for this to happen also what they want from the providers eg weekly report copies of all assessments, how often care coordinator will visit the patient also what will be checked on at each CPA etc.

What the panel do not want to see is that this aspect of identifying the needs and how this would be managed or not done by the potential placement. We need to skillfully set the agenda of what is required to bring about a change for the patient. Hence the request for a medical review in order to obtain a comprehensive plan regards to what medical input would be helpful that we cannot manage in the community. The same can be said regards to the assessment as to why 24 hour supported accommodation is not working either is staying with her mother.

We have to be much more robust regards to why institutional care would absolutely benefit this patient. In a nut shell it is about proving why your assessment as Care Coordinator is paramount in setting the agenda of care needs required.

My apologies for not directing you more clearly however my meeting with both Leigh and Malcolm has sharpened my understanding regards to what is required for a case to be successful at panel.

I hope you have found this useful

Kind regards

Norma.

Email from Ahmed Monowara

Sent 06.11.2012 at 12.33

To Johnson Norma

Rehab Placement

Dear Norma

I am familiar with the placement suggested by Olu.

Recently I have a client who has been discharged to this care home from Kneesworth Hospital. The placement was identified by Paul Gill.

Given the history of MM I do not think this care home would be beneficial for her. This could be a future placement after receiving support from hospital settings where her problem can be identified and find a way of management strategy how she can be managed safely in the community. Presently her life is at risk of severe self harming behaviour and getting into trouble with Police. She could be ending up Dead

Regards monowra.

It is sad reading the above especially when there are so many errors recorded in file records. Elizabeth has never self-harmed, apart from a few scratches to her face. They have failed to protect her under care, previously highlighted under 24 hr provision where staff slept through the night.

For four months, we, the family provided wonderful care through “Working to Recovery”. Taken from Elizabeth’s diary notes, this appears on Rightful Lives on-line Exhibition.

I was working full time but for the first time felt relaxed knowing my daughter was being treated like a human being and in a safe place and good environment. She stayed at the family home in Scotland before going on holiday to France and Spain with them. Considering so much time having been institutionalised, she was starting to show improvement as a result of being in a peaceful and healthy environment. I was so happy for her staying with a decent family, receiving the right care which included psychotherapy, art therapy, music therapy, home cooking, freedom to go out and not caged like a prisoner. Her confidence began to increase and after two months she requested to go on holiday with them which I was happy to provide. Instead of drugging to the hilt they worked with her and she started to open up and reveal her suffering under a scheme called Moti Villa. For the first time she was able to express emotions freely. She had company of around her own age staying in the family home and throughout France and Spain was not treated like a person, not an object. She went out and about by herself and even learnt to communicate in French. Ending up in Paris she attended a conference and was taken out for a meal with French psychiatrists who were apparently fascinated. When she came back to Scotland she was offered the opportunity to go to Australia and amazingly agreed. When the plane landed in Dubai Elizabeth was overwhelmed. I was so happy to receive a call from her saying she was in the luxury airport lounge and the food was fantastic. I believe they flew with Emirates and she got a glimpse of Dubai before boarding the plane to Perth, Australia. Single handedly a former MH nurse of many years experience accompanied Elizabeth on the journey to Australia and took her on holiday. It is all about how someone is treated and down to good communication skills. Unfortunately, so many professionals do not possess these skills or else staff shortages on the ward impact upon the ability to spare time to communicate and a quick fix of rapid tranquilisation of a patient means peace and quiet to them.

In the community schemes provided under Enfield Elizabeth was severely neglected. At the care home mentioned she was not on CTO but it became increasingly apparent this was being arranged. This care home was about an hour’s journey away but easier to get to than Wales. Whilst at Cambian, Wales attempts were made to get rid of me as NR and to sever contact by taking the phone away. Luckily at the time I had solicitors involved but now it is virtually impossible to get that kind of support.

The story “My wonderful Care” details a trip of a lifetime where Elizabeth worked with professionals both local and international as well as peer support workers, musicians and art therapists and everyone took part in chores etc. There was a graduation party before return back to the UK. How I wish she had stayed there in Perth and had not come back to a situation where there was no continuity and no provision whatsoever in the community. When she returned she wanted a job, she was able to express herself clearly. This was all back in 2016 just before Xmas and she was unrecognisable and not suffering from anxiety.

Prior to 2016 I was taken to Court of Protection. This was sprung on me at short notice whilst I was working. I can’t praise the Court of Protection high enough. The Judge showed Elizabeth around the court room before proceedings began. At the time Elizabeth had a fear of heights and lifts so in order to alleviate her anxiety I booked a therapy session with Susan Hepburn of Harley Street who she had seen once before and was able to really assist successfully.

“We recommend Mental Health Act assessment for the mother with the help of GP to be organised by the Rehab Team.

SOVA to be raised

Consider physically separating them through legal process, transferring Elizabeth back to Northampton.

Consider transferring Elizabeth’s care back to the Rehab team.

NB Staff to be aware that Elizabeth’s mother is documenting all visits by staff on her blog: psychiatric abuse UK.

Originator Jalonen, Esther

21 May 2014

T/c with HTT (Managed by Dr Helen Moorey) who went on to be RC of Suffolk Ward with an aim to request rehab team to accompany them today on their morning visit.

PLAN joint visits by HTT and Rehab Team and establish Elizabeth’s mental capacity.

I received a telephone call whilst at work that Elizabeth and her sister were hiding in a cupboard because social services were coming round and knocking on the door. “what shall we do Mum” – in the end luckily there was a friend of the family in the house who answered the door to say the girls were out.

Following decision by CoP Elizabeth was allowed to come home but prior to this was another case “Deprival of Medication Community Care” – Irwin Mitchell.

The whole experience of living under Enfield has been like hell on earth and during lockdown it made me think seriously about whether I wanted to remain in that area as I knew nothing was ever going to change. However little did I know that even in a new area the grass is not greener on the other side and sadly it doesn’t matter where you live in the UK there appears to be a culture of bullying throughout the NHS if you as a carer/parent dare to complain.

There is supposed to be a care act assessment taking place but I am excluded. They say they will take into account my comments on the Care Act assessment form. I found when completing this form that many of the questions did not apply. How can you talk about goals and education and work when someone has deteriorated to such a massive extent over 19 months held on an acute ward with no end in sight. Maybe the care act assessment has been forced upon my former local area who unknown to us are still responsible for providing the S117 aftercare.

I was blamed for stopping the depot when moved to the new area but was able to produce evidence to the contrary. I was then subject to lengthy investigations by the Public Guardian Office alleging neglect and abuse. However this went in my favour.

Who is going to listen to a parent when so many professionals back one another often contrary to their own Codes of Conduct. “it was not my decision but that of the MDT” – in other words no accountability. I have acquired extensive records and investigated everything thoroughly.

It is exhausting to constantly have to stand up for yourself in a culture of bullying and this is how I see myself as being treated as well as my vulnerable daughter who clearly wants to come home to the detached annex in my back garden.

There has been no assistance for adaptions and it would appear the MDT never had any desire to work with myself as mother/carer and it has become apparent that they wish to institutionalise her into care they provide and possible out of this area which would be very upsetting to everyone in the family.

On the ward it has been mentioned there have been “episodes” – seizures. The episodes are not of violence but triggered by extreme distress most probably cause by the enormous restrictions in place. I never encountered any violence at home whatsoever but the seizures could also be the cause of the cavernoma and lesions shown on private scans and noted as far back as 2007 . I attempted to get adaptions such as stronger bed but was told this was not possible as Elizabeth was still held in hospital after 19 months Elizabeth she is still stuck on an acute ward. Almost 30 people are recorded in invitations to attend an MDT meeting excluding family.

When complaints remain unresolved there is the option of Ombudsman/PHSO but I only have 1 positive outcome and that was on safeguarding under Enfield who held several section 42 meetings behind my back. Thankfully Elizabeth gave me the minutes which I reported to Police.

As for the Police and Ambulance services Elizabeth became one of the highest callers in the former area but trusted them and regarded Police and Ambulance personnel to be her friends. In the absence of any care in the community or provision such as direct payments which could have avoided all of this but was never offered and neither was a care act assessment in the former area.

I wish there was a system of openness and transparency within the MH trust with Open Dialogue instead of exclusion of family and carers. The MDT are exclusive to professionals and decisions based on best interest due to their conclusion of no capacity which is highly disputed.

• Principle 1: A presumption of capacity. … 
• Principle 2: Individuals being supported to make their own decisions. … 
• Principle 3: Unwise decisions. … 
• Principle 4: Best interests. … 
• Principle 5: Less restrictive option.

There has been a spate of about 5 capacity assessments done on Elizabeth recently and shockingly two of these have been by doctors, Dr AB and Doctor TS who was only a very short time at Ash Villa.

None of the capacity assessments have been done properly. It is very important for anyone in this position to question whether, based on the above principles the capacity assessment is done fairly and honestly and I am going to give some examples of dishonesty below. In Elizabeth’s case all the capacity assessments have been done with some internal connection from what I can see and when there are certain aims of the team such capacity assessments can be twisted to suit themselves in order to get the results of anything they want such as for instance placing someone into care against their wishes. This is why anyone affected should request a completely independent capacity assessment.

In my previous blog I have shown how wrong this person, a different doctor has got things. How this person has assumed Elizabeth had no capacity just because she did not wish to participate which was evidenced by her comments “no comment” and evasion of answering. This shows she has full capacity and far from being someone with a learning disability who you have to talk in short simple sentences Elizabeth was diagnosed by Huntercombe as being high functioning aspergers.

I am now going to highlight the other Doctor’s capacity assessment which came out against Elizabeth. All of them have been two stage capacity assessments based on assumptions and beliefs such as if the person’s behaviour suggests they may lack capacity and this is ticked. If the person’s circumstances suggest they may lack capacity another tick. Some else has raised concerns another tick. There have been capacity issues previously – another yes (Well I am afraid you have not looked at the files properly as there has never ever been an issue regarding capacity and I have all the past reports to prove it). It says she has a mental disorder. Again where is the proof when I have all the files going way back to the beginning stating autism/developmental and this is not a mental disorder. It is a neurological condition.

He then says she has no understanding of information when Elizabeth constantly phoned me to tell me about all these assessments and that she was NOT going to engage.

So he did not see Elizabeth alone but with a nurse who herself has tried to carry out a best interest assessment. Apparently there are so called formal assessments to decide upon what they think is best interest and then there are the numerous tick boxing not fit for purpose assessments carried out by members of nursing staff or social workers all because they want Elizabeth to say the right things so that they can manipulate process and with make every single decision in the book. However it has backfired on them all and I will go on to show you why.

“I asked if she had any questions to ask” – the answer “no questions”. This probably meant Elizabeth did not want to be asked any questions of the same nature time and time again. It says she did not wish to discuss the matter. That was under retention.

Use/Weigh up relevant decision/information – no had a tick against it with the comments she was not able to weigh up pros and cons or understand the information. This all sounds like some kind of con to me. I am laughing at this.

Communication:

“not able to relay it back to me as if she did not wish to discuss the issue any more. This says it all Elizabeth simply did not wish to participate yet the box was ticked with a No.

The capacity assessment had so called relevant documents attached by a consultant psychiatrist of the inpatient “care” and AMHP Report

And here is my verdict RUBBISH! AND SHAME ON YOU.

Next is another two stage capacity assessment by an AMHP KF – Again this is stating that Elizabeth has no capacity. This report has more wording to that of Dr S.

So KF had to see Elizabeth in the afternoon because the Team said she is asleep in the mornings – sometimes she is asleep all day! she stays in her room to avoid the noise on the ward which is unbearable.

Deputy Ward Manager KS was present who herself has carried out another similar capacity assessment all pointing to no capacity.

“When I asked questions I used clear simple language and offered some processing time to consider what we discussed returning to see her two hours later to see if there was anything she wanted to say. “ Well how patronising. All the time you think my daughter is “LD” – she fully understood and relayed everything to me later. Oh my God talk about coercion! I cannot go into the details but when a team want a decision of some kind they will go to any lengths to get it using and manipulating/coercing a vulnerable person to their own ends.

Understanding – No

but in answer to her questions she said “my back is broken and I have got autism” Isn’t that easy to see and I am just a mother (a nobody to them) yet I understand that Elizabeth simply did not want to answer their intrusive questions. So KF goes on to say “just because someone has autism (noting this is not a formal diagnosis) although the very first doctor and several others have confirmed this “does not mean they do not have opinions or views about what they want to happen. Elizabeth was adamant she did not wish for involvement. This is really shocking but I must share this with all of you:

With regards to Elizabeth’s comments that her back is broken, KF then goes on to reason for this “I have checked with the care team and have been informed there is a likelihood that Elizabeth has injured her back when in periods of high distress and volacity (not to a significant degree other than sprain or strain) she is not known to have broken or injured her back to a similar level. I will describe what we witnessed like never before during a period of leave when it was time to see the crisis team the next day and similar excuses of broken back were being given. Elizabeth was throwing herself on and off the bed in the small ensuite constantly and screaming for an hour. She was shaking with tremors to her hands and all over her body. She was inconsolable. I have only ever seen that on one occasion and put it down to Akathisia due to the enormous dosage of drugs given. She has just been given a massive reduction of 100mg. I am not a doctor but I think this reduction may be a bit high as in Enfield it was 50mg every six weeks. For obvious reasons massive dosage of drugs given in the hope that Elizabeth would lose her capacity as she did at the Bethlem during which time they put her on a drug she clearly did not wish to take and did not even know she was on it. Again Elizabeth said she was autistic and could not do what this assessor suggested.

Retention: Again no.

“I can see there have been occasions when Elizabeth has been emotionally distressed and has expressed anger without prompting and has stated that LPFT does not have the right to *************”

“I do not consider Elizabeth is able to retain all the pertinent information.” was KF’s conclusion.

USE/WEIGH

Elizabeth is unable to weigh up all relevant information. Over the course of admission to Ash Villa Elizabeth has remained guarded with mistrust of professionals related to her mother. This guarded presentation and mistrust of professionals would be in line with paranoid beliefs as a facet of her paranoid schizophrenia diagnosis. They have done everything they can with my former local area of ENFIELD to deprive Elizabeth of an autism diagnosis and I want the world to know this. There is clearly no respect towards patient or carer under LPFT.

“Further to this during my assessment Elizabeth presented with active negative symptoms of schizophrenia including a flat affect, avolition, limited vocabulary and social withdrawal. These negative symptoms would have an impact on Elizabeth’s motivation and concentration relating to both engaging meaningfully in this assessment. ” I did not know KF was a doctor lol. I have looked her up – can you belief this KFG is Safeguarding Public protection and mental capacity practitioner registered social worker. She is supposed to be an experienced safeguarding and MCA specialist with demonstrated history of working in MH and social care. Skilled in forensic/criminal justice practice, MH car, public protection and both child and adult safeguarding. She has an MSc focussed in social work. She works for LPFT NHS. What I have researched is too long to write here but there is extensive experience and qualifications yet she has not done things right at all in her capacity assessment for Elizabeth and has shown nothing in terms of understanding, insight and is not even a doctor to assess medically. Elizabeth said she wanted no part in this. Doesn’t that signal capacity? When she tried to explore the reasons why Elizabeth said she had a broken back and has got autism Elizabeth closed down the conversation “LEAVE ME ALONE. I DONT WANT TO TALK ABOUT IT”.

KF is not qualified as a clinician and cannot adduce evidence of a clinical nature.  It is however interesting that since all of these symptoms are associated with dysfunctional endocrine functions in particular defective thyroid function that the clinicians at Ash Villa think it is necessary to examine this.  Rapid tranquillisation and seclusion are not recognised treatments for hypo or hyperthyroidism.  

The signal lack of interest in pathological causes for psychological dysfunction is a blight on psychiatry and every reason why all psychiatric patients should have regular endocrine function tests and neurological scans for dysfunctions in the amygdala hippocampus and pre-frontal cortex.  It is a blindingly obvious (except to many psychiatrists) precaution that pathological disorders should be screened for. Hope you get to read this KF and any other AMHP who carries out flawed capacity assessments as part of their job. Did you not get that KF with all your qualifications and experience even I as a mother would know when someone wanted to be left alone. It is cruel that you have tried to coerce answers out of my vulnerable daughter which was upsetting to her and relayed to me as she hates questions and I honestly think you and other AMHPs should be on Oliver McGowan’s training course both in Lincolnshire and Enfield.

Negative comments from KF about me now and I was not even present to defend myself but I will here:

“There are wider safeguarding concerns about mother that Susan has been noted to speak over for and about Elizabeth in her presence.” Well you are a fine one to talk aren’t you. You have been doing just that in this assessment.

“Elizabeth is highly emotionally distressed following visits from Susan” “It has been recorded within records a history of similar concerns in relation to Susan’s control and coercion of Elizabeth shared to the Trust by Elizabeth’s previous care team (PREVIOUS LOL THEY ARE STILL VERY MUCH INVOLVED!) and have been all along. There is a Care Act Assessment taking place on Friday by them – the first I can ever remember in so many years.

“As a result longstanding controlling and coercive behaviour would significantly impact on Elizabeth’s ability to make decisions and there have been occasions when Susan has visited but has declined to see her.” There was one occasion and something very strange happened. I was told not to visit the ward but did not pick up the message as I was driving that there was covid on the ward but I had asked for leave as it was Elizabeth’s Birthday. Elizabeth was looking forward to her Birthday cake as she had texted me the day before very excited but staff stood in the way of her coming out even in the grounds for just 5 minutes so I could not give the presents “it’s evil to keep her from her mother on her Birthday” comments from a nurse on duty that day. Suddenly Police were called and I requested a welfare check by them but this was refused by Ash Villa staff and response from the Police: “leave it to the professionals to do what they do best” or words to this effect. Police in Lincolnshire do not feel it their duty to argue in respect of seeing a vulnerable patient even if that vulnerable patient tries to reach out to them by phoning emergency services.

How very nasty – KF goes on to say about me “Susan has been witnessed calling Elizabeth from the car park and insisting she consent to her visit in a hostile manner which Elizabeth then agreed to” . Given the above, I consider that Elizabeth would be unable to weigh up information free from duress or apprehension about Susan’s response to this“.

She then goes on to say that Elizabeth has demonstrated “inability to tolerate lengthy conversations regarding her care and treatment. She can be passive aggressive in her interactions with staff and will frequently close down conversations by staring at staff or demanding they “leave me alone” using verbal, para – verbal and body language to communicate in a hostile and aggressive manner.”

COMMUNICATION

No! “I dont want to participate” and also constant expression of unhappiness towards LPFT.

Then KF goes on to say that “KS who is Deputy Ward Manager was in attendance and in agreement with my judgement that Elizabeth lacks capacity. Although this is the first time I have met Elizabeth I have been involved in her case advising the ward from a safeguarding and MCA perspective since January 2022 so am fully aware of the background and context of her admission, presentation and wider safeguarding concerns pertaining to her relationship with her mother.”

In addition to the above capacity assessments various other capacity assessments said to be in best interest have been carried out by GJ and KS – deputy ward manager. Elizabeth said she was not even informed she was undergoing a capacity assessment by GJ.

All along it has been a campaign of bullying, an abuse in process and professionals who have behaved in the most appalling manner particularly in relation to safeguarding.

Several patients have come up to me in the grounds raising safeguarding concerns that Elizabeth is being over-drugged. At times we could hardly hear her speak as she spoke with a slurred accent. In light of the fact she is a poor/non metaboliser and of high risk of mortality in accordance with a care plan she shared with me I am going to publicise every time I get to hear of her being rapidly tranquilised as the next thing she could be dead in there then the same thing would be sticking together regardless.

There are staff shortages on the ward and I look out for this. When Elizabeth first arrived in a caged vehicle in a very distressed state there was only 1 male nurse on duty who urged me to complain.

The last thing I wanted to do was complain in a new area but now have had to turn to those at the top of Trust and Council which I will feature another time.

So as you can see none of these assessments have been done fairly or correctly by professionals who should know better and let every other professional down by their dishonest approach. This gives their profession a bad name.

All along they have tried to carry out safeguarding on me but I found out. I welcomed the idea of safeguarding by way of a S42 meeting. Of course I have the minutes of the S42 meeting in Enfield that Elizabeth kindly gave me. The result was both Enfield Council and BEHMHTNHS had to apologise because of the Ombudsman’s findings.

This time the safeguarding concerns came from patients who were concerned that staff at night were picking on Elizabeth and some slept with their doors open “we know when she is in seclusion as we hear her screaming non stop” “we cannot safeguard her when she goes into the seclusion room. She goes in with a tray of difference sized needles” So I said “I thought it was a De-escalation room” “same thing – seclusion” said the patients. Based upon what I heard I complained as any parent would and there was no way I could dismiss what these patients were saying when I heard very clearly some of the things that were going on. When I asked if there was any staff members in particular that were picking on her the patients said the vast majority of night staff. This of course would be denied or played down. When someone is asleep for most of the day they will be awake at night but she has been told to get out of the dining room and not to sit in front of the TV in the lounge but to go back to her room. It is at night that Elizabeth would be wide awake because she would be spending most of the day in her room. It is at night she would be plagued with trauma and nightmares none of which has been tackled at Ash Villa as there has been no psychologist in 19 months. She is placed in a part of the ward that is very noisy near the seclusion room. I have asked if she can be moved. She was also left to lie on a faulty mattress and sent me the picture of it but this was dealt with the minute I showed evidence of this. Does this not show that my daughter has capacity.

The common law test on capacity is the Masterman Lister v Bruton & Co https://www.casemine.com/judgement/uk/5b46f1f52c94e0775e7ef161

Capacity assessments need to be done independently to the treating team who clearly have their own agenda and are not fit to be qualified in this respect.

Capacity assessments do not need to be done by psychiatrists, they are done by qualified best interest assessors.  Capacity is NOT related to diagnosis, there are many reasons for lack of capacity and it is nothing to do with schizophrenia, PTSD or autism.  People with those diagnoses can have capacity and many do.  Autistic people get doctorates in nuclear physics and lots of practicing psychiatrists themselves have severe mental illnesses.  Are we to suppose that they don’t have capacity to work as doctors? 

The LCC and LPFT are trying to do an end run around the MHA 1983, the MCA 2005

As regards treatment:

There appears to be a complete lack of monitoring of the treatments being given to her.  Dosages are increased without checking serum levels and ability to metabolise the drugs.  There is no clear knowledge of why Elizabeth is treatment refractive but the most likely reason is she is a poor metaboliser or that polypharmacy is interfering with the treatments.  It is most likely that the Zuclopenthixol is within the therapeutic band but without a serum test that is impossible to determine.  If she is a poor or non metaboliser increasing the dose will not result in any improvement and tests in the past have indicated she is a poor metaboliser of typical anti-psychotics.    

Any patient presenting with inflammatory conditions needs close monitoring to avoid ADR’s and dose modification is almost certainly necessary.  It should be noted that inflammatory conditions are commonly seen in patient with endocrine disorders.  

The capacity assessments are all totally flawed and it is self evident that Elizabeth has capacity.  It may be said to be limited but not to the extent, or anywhere near the extent they are suggesting.  If she gets out of an institutionalising environment she will regain what she currently lacks.  It is the environment itself that is causing the inhibited capacity.

Ash Villa is a shambles and LCC and LPFT are struggling not very effectively to hide that.  The treatment of Elizabeth is incompetent and the over zealous use of PRN and seclusion a human rights violation.  That is what they want whacking with.

Robbing Elizabethof capacity is robbing her of he most fundamental rights as person and in effect turns her into a ‘thing’ rather than a person.

How true “I am not a person” “I wish I was never born” – This describes my daughter’s feelings and her treatment under the appalling NHS care – doesn’t matter where you live it is the same everywhere under mental health as we have unfortunately discovered yet hoped for something better. 

She has capacity to decide what is in ‘her best interests’ and that is categorically clear. 

Any patient presenting with inflammatory conditions needs close monitoring to avoid ADR’s and dose modification is almost certainly necessary.  It should be noted that inflammatory conditions are commonly seen in patient with endocrine disorders.  

There have been around 20 cases where patients were prescribed clozapine and had concomitant inflammatory disorders including those caused by pathogen infections and autoimmune conditions.  The inflammation increased the serum dose ratio and in 11 of the cases it was recommend to half the dose, in 5 others to reduce it by a third. Serum concentration is the major issue with this drug rather than dose and a high serum concentration can occur with a moderate dose.

It is this ratio that creates the problems with ADR’s and metabolism failure due to cytochrome P450 down regulation.   

The maximum dose in all cases had been 350mg and nowhere near maximum but still the serum dose ratio was adversely affected by the inflammatory disorder the patient had.  

s.117(6) Mental Health Act 1983 as amended by s.75 Care Act 2014.

Accommodation can only be provided where it meets a need related to the person’s mental ill health, and reduces the risk of the person’s condition deteriorating. At Ash Villa there are frequent bouts of inconsolable behaviour leading to seclusion and her being left to scream for hours on end. At home there has only been 1 incident and we are asking for adaptions to be made to the annex which we as a family have provided.

The person has the right to express a preference for particular accommodation. Social services must meet this preference provided it is: Elizabeth wants to come home and we as a family WANT HER HOME IN ACCORDANCE WITH HER WISHES.

·       of the same type that social services has decided to arrange – CARE IS ONLY ON ONE SIDE OF LINCS.

·       suitable for the adult’s needs THERE IS A VERY GOOD CHARITABLE SECTOR HERE WITH SO MUCH GOING ON THAT ELIZABETH WOULD BE INTERESTED IN.

·       available

·       affordable, using a ‘top-up’ if necessary

Applicable Principles and Requirements

The recent capacity assessments all been seriously flawed in terms of the requirements and principles of the Mental Capacity Act 2005, the Code of Practice, and indeed in the very philosophy underpinning the legislation.

The concept of best interests is founded on the most fundamental principles of human rights. Those principles are centred entirely around the welfare of the patient and never in the interests or expediency of ward management or those carrying out assessments.

The Mental Capacity Act 2005 at Section 4 requires that the patient is to be regarded as having capacity until evidence is ascertained as to how that capacity is impaired.  

No Proper Capacity Evidence

No proper, full, objective and admissible evaluation of capacity has ever been made at Ash Villa; and/or

• there has been bias in  assessment so materially affecting validity that none of the evidence on capacity is admissible.  

Elizabeth’s Responses

What is startling is that no account is taken of Elizabeth’s reaction to being, as she sees it, in an oppressive institutionalised situation in which she has virtually no right to privacy, family life or psychological and spiritual enrichment.  

It is hardly surprising that any person so deprived of the most fundamental of human aspirations is not so much lacking capacity but is self evidently being deprived of it.   

All of this is in breach of the letter and spirit of section 4, MCA 2005.  

The Prohibited Step

It is never allowed that the decision maker on best interest draws conclusions on capacity from a patient’s age or appearance on a condition of his/hers or an aspect of his behaviour which might lead others to make unjustified assumptions about what might be in his/her best interests by section 4(1)(a) & (b).  This is known generically as The Prohibited Step.     

Failures: Identification of Issues

Section 4(2) MCA 2005 requires that the decision maker should try to identify all the issues that would be most relevant to the individual who is asserted to lack capacity relating to the particular decision (para 3, Main Code of Practice)

Failures: Framing of questions/suggestions

The framing of questions/suggestions in closed form gave Elizabeth no opportunity to explain or include detail in her answers.  

It is a disturbing oversight on the part of those carrying out those interviews that the nature and framing of questions and suggestions, and their leading nature, made it impossible for her to express herself.  

Failures: Elizabeth’s Clear Responses

There is no evidence from the interviews that there was any attempt to determine the actual meaning of Elizabeth’s clear responses to questions/suggestions made by the interviewer.  

Failures to comply with Requirements

The capacity assessments were not conducted as required by section 1 of the Mental Capacity Act 2005.  

It is submitted that the capacity evidence is inadmissible as evidence of lack of capacity not only

because of logical and factual inaccuracies in the statements, but also for failure to apply the meaning of the statute, and the failures to follow the required steps:

Submissions on the Required s.4 Steps

The required steps, in summary, in s.4 of the Mental Capacity Act 2005, and appropriate related submissions, are:

To consider the likelihood of the person gaining capacity. There is no evidence that this was even considered by either first or 2nd opionion assessor or in the ‘off record’ intervention by KS, and thus never taken into account at all.

To promote and encourage the participation of the patient so far as possible.  There is no evidence that Elizabeth’s participation via appropriate dialogue was encouraged or ever taken into account at all. Indeed the first and second assessor treated her as someone with a severe learning disability rather than an educated woman with a chronic mental health condition.  They make reference to talking to her in “little chunks of three sentences”.  Nothing in Elizabeth’s diagnosis suggests that she is mentally retarded or incompetent and this approach is in clear violation of  The ‘Prohibited Step’ described in section 4(1) of the Act. 

To consider the persons wishes, beliefs and other factors the person would be likely to consider were they able to do so.  Once again this is not taken into account at all by either of the first and second opinion assessors.  None of Elizabeth’s wishes were considered in those interviews or were simply disregarded with scant attention.  No attempt was made to understand why she may have taken those positions, including of course that the oppressive nature of the interview with no independent observer present may have seriously deprived of any ability to explain in detail.  All contrary to section 4(2) and the main Code.

To take account of the views of named others.  This is perhaps the most obvious complete failing of all the assessment interviews and is a cause for serious concern.  The views of neither Susan Bevis, Elizabeth’s mother, or CB, her sister, or her father were taken into consideration or even sought.  

Conclusion:

The individual and accumulative effects of all of these failings make the statements by the assessors incapable of being relied upon at all.  

Comments on the Section D Assessments of the 1st assessor and second opinion assessor in red. 

Question 1. UNDERSTANDING: Does the person understand the information relevant to the decision?

Elizabeth frowned and stared at me. I added that according to her records, her mum does not believe that she suffers from the diagnoses listed. I explained that she believed that she had ‘autism’. She asked me what was going to happen about that diagnosis and I explained that she has been (or is going to be soon as we have agreed in last ward round) to be referred for a diagnostic interview but unfortunately, there was a long waiting time and when her turn comes up she would be assessed for it. 

‘as if’ is entirely speculative and inconclusive of Elizabeth’s lack of capacity.  It is also contradicted by Elizabeth’s response to the suggestion ************“Elizabeth frowned and stared at me”.  Such a response is self-evidently disapproval and indicates the capacity to make decision on this.  If indeed Elizabeth was expressing a refusal to discuss the matter further that cannot be ‘reasonably’ regarded as a lack of understanding of the issues and would just as likely show an objection to the suggestion ***********  Elizabeth’s mother’s beliefs are not evidence of Elizabeth’s capacity or lack of it.  

This is a logical fallacy. It is effectively asking Elizabeth to acknowledge her lack of capacity.  Logic clearly dictates that if she does not understand the information ‘given in little chunks’ she is not going to be able to determine her own lack of capacity. 

Question 2. RETENTION: Can the person retain the relevant information long enough for the decision to be made?

Answer: No

I asked her if she had any questions to ask and she said “no questions”. It is my reasonable belief that Elizabeth was not able to recall the salient points given to her to enable her to make a decision ******************t. It seems like she was able to retain the information for some time but she was not able to relay it back to me as if she did not want to discuss this issue anymore.

“I asked her if she had any questions to ask and she said “no questions”.”

“she was not able to relay it back to me as if she did not want to discuss this issue anymore”.

It is not a reasonable basis of belief that this indicates a lack of capacity and could just as easily represent defiance or resistance to a suggestion that Elizabeth found threatening or disagreeable.   It is also logically inconsistent.  If Elizabeth says “no questions” there is no reason at all why she would wish to relay back the discussion.   

2^nd Opinion Comments

1. UNDERSTANDING: Does the person understand the information relevant to the decision?

Answer: No

Elizabeth stated that she could not be involved in …………..because “my back is broken and I have got autism”. I did challenge Elizabeth on this stating that just because a person has autism (noting this is not a formal diagnosis for Elizabeth) – (no because it has been consistently deprived to her!) does not mean that they do not have opinions or views about what they want to happen, Elizabeth was still adamant that she could not be involved. I have checked with the care team and have been informed that although there is a likelihood that Elizabeth has injured her back when in periods of high distress and volatility, this has not been to a significant degree beyond strain or sprain and she is not known to have ever broken her back or sustained a similar level of injury. Elizabeth has frequent bouts of throwing herself off the bed onto the hard hospital floor in distress. Then we saw this on one occasion at home. All leave had been going OK up until then. That one occasion was on a new bed now broken but not a strong stable bed and all that is needed is a strong bed provided and nothing has been done about this since 5 March 2023.

On the balance of probabilities, I consider that Elizabeth does not understand all the salient information needed to be able to make such decision. When I tried to explain to Elizabeth that she could instruct a solicitor or tell the ******* what she wants, she was fixed in her view that she could not do this because of having autism. This evidences that Elizabeth does not understand all the options available to allow her to participate ***************** No this evidences that you the Dr do not understand!

Elizabeth stated that she could not be involved in court proceedings because “my back is broken and I have got autism”.

That is not conclusive or even persuasive evidence of a lack of capacity.  Elizabeth’s erroneous belief in her condition is not indicative of an inability to choose ******** or a failure to understand the questions put to her.  As for the injury to her back, she has been subjected to numerous physical restraints including pinning her face down on the floor according to witnesses .  It is entirely understandable that she may use hyperbole to describe her pain from injuries sustained by this restraint. That is not evidence of a lack of capacity.

2. RETENTION: Can the person retain the relevant information

long enough for the decision to be made?

Answer: No

Elizabeth has demonstrated that she does retain some information relating to ***********

I can see there have been occasions when she has been emotionally distressed that she has expressed anger about **************without prompting and has stated that LFPT does not have a right to stop her mother ************ She was also able to recall today that her mother is her **********

Although there is clearly a level of retention regarding this decision, I do not consider that Elizabeth is able to retain all the pertinent information required to be able to *********

After I finished my discussion with Elizabeth, deputy ward manager KS went to speak to her

independently in her bedspace to see if she was willing to discuss this decision in more detail without me being present. Elizabeth asked KS if I was going to be going to ******* Elizabeth had asked me the same question approx. 10 mins earlier when I was talking to her and I explained to her that I was not a solicitor and was not going to be in the ******* but that I would be writing about our discussion today and the *********. As Elizabeth had asked KS the same question 10 minutes after I had given her this information, this evidences difficulties with retaining all relevant information relating to ************ I see there have been occasions when she has been emotionally distressed that she has expressed anger about the *********************** without prompting and has stated that LFPT does not have a right to stop her mother being her ************** She was also able to recall today that her mother is her ********

All of that is indicative of a functioning capacity to understand the issues, not only at that point but on reflection of earlier events.  This is fully supportive of her ability not only to recall but to maintain a position on the ********* In the light of this is cannot be stated that “on the balance of probabilities” Elizabeth lacks capacity.  The MCA 2005 principles found at are at section 1  quite explicit that the capacity assessor should work on the basis that a patient has capacity ‘on the balance of probabilities”  Those principles are as follows:

• Principle 1: A presumption of capacity. … 
• Principle 2: Individuals being supported to make their own decisions. … 
• Principle 3: Unwise decisions. … 
• Principle 4: Best interests. … 
• Principle 5: Less restrictive option.

Violations of principle 1:El;izabeth is presumed in the negative contrary to the principle of presumed capacity.  Clear evidence in Elizabeth’s answers and  attitude to the capacity assessment indicates a presumption of capacity and not the contrary.

Violation of Principle 2:Elizabeth has received no support to make her own decisions and was not supported at this capacity interview by an independent advocate.  The clinical staff are seen by Elizabeth as intimidatory.  Her responses to these capacity interviews show clear evidence of resistance to the questions and objections to the purposes of it.

Violations of Principle 3:  Section 1 of the MCA 2005 and the Code of Practice are quite explicit that unwise decisions cannot be used as evidence of lack of capacity.  Emphasis is placed in the interviews on irrelevant interpretations of Elizabeth’s mistaken beliefs in her diagnosis.  It is very often that case, probably more often than not that a psychiatric patient will deny their illness.  This is not evidence in itself of either delusion or lack of capacity.  Elizabeth’s complaints about the back injury are quite explainable since she has been subjected to maximum physical restraint on several occasions.  The use of restraint has been described as a method of dealing with “distressed” patients at Ash Villa and that is quite disturbing.

Violation of Principle 4:  It was in Elizabeth’s best interest that this interview was conducted in the presence of an independent advocate or her *******  Neither was present and Elizabeth had no support.  Elizabeth is used to being physically restrained and in the light of that far better safeguarding of her best interest should have been applied at these interviews.    

Violation of Principle 5. Elizabeth is currently being held under a regime of restraint and it is difficult to see how she could be subjected to a more restrictive option.  The two on one surveillance that has been employed at Ash Villa and the intrusive surveillance of family visits is more severe than many s.37/41 patients would encounter.  There is every reason to believe that should Elizabeth be given a less institutionalised and restraint based treatment regime that she would display a much better degree of capacity than the current regime allows.   

“I do not consider that Elizabeth is able to retain all the pertinent information required to be able to******* in these ********

Elizabeth is not required to ********* these proceedings she is represented by a ************* and has a right to a *********

“As Elizabeth had asked KS the same question 10 minutes after I had given her this information, this evidences difficulties with retaining all relevant information relating to the ***************”.

That presumption is fallacious.  Elizabeth could just as likely have been seeking verification from someone she was more familiar with and it does not necessarily indicate she did not understand or retain the information.  It is also indicative of a lack of trust, especially in the light of the stated reason for KS wanting to speak to Elizabeth independently.    The suggestion that the capacity assessor was being mistaken for a solicitor is not made out.  Elizabeth’s question regarding whether the capacity assessor was going to be ********* is perfectly sensible since this person was discussing the ********** with her.  

“Elizabeth demonstrates an ability to communicate her views to the extent that she chooses and is able to do so. She did offer a view regarding her involvement in the current **************”I don’t want any part in it”. Further to this, she has at times of distress spontaneously expressed her unhappiness that LPFT have instigated these *************** Additionally, when deputy ward manager KS went to speak to Elizabeth alone 10 minutes after my assessment with her, she was able to express to KS that she did not want me (meaning KF) to have anything to do with the **********”.

Although Elizabeth is guarded and refused to discuss her capacity to ******** in any great detail with me, I do not consider that a refusal to communicate a decision equates to an inability to do so and therefore on the balance of probabilities, I consider that KS does have the ability to communicate in relation to this aspect of the capacity assessment”.

This element of the statement is riddled with contradictions when considered against the principles defined in section 1 of the MCA 2005.  Elizabeth appears to have a full appreciation of the nature and purpose of the litigation and expresses strong and clear views on it and the *************process as currently conducted by LCC Adult Social Care.  As stated a refusal to communicate is hardly any evidence of an ability to do so and is in realty much more likely to indicate a good range of capacity.  Once again concluding otherwise falls foul of principle one of the Mental Capacity Act 2005.  The entire process seems faulty and as such should not be admissible as evidence in these **************

As for the capacity assessment the best interests assessor will undoubtedly insist on certain conditions in order to carry this out effectively.  I would consider it unlikely that they would think having nurses with Elizabeth while this happened was at all appropriate.  The assessment of course is entirely reliant on Elizabeth co-operating.  It can be done remotely but it would have to be by Zoom or Teams so Elizabeth and the assessor could see each other.   

It is of course very likely that the AMPHs will not approve of this and put pressure on Ash Villa to prevent it.  Complete failure by the so called professionals involved in my daughter’s case. Complete lack of understanding and complete ignorance towards autism. I am apalled so much by hearing some of the heart-breaking messages from my daughter. This needs exposing.

What is manifestly obvious it that neither the LPFT or LCC will countenance Elizabeth moving into the annex full time.  Everyone at the LCC from the unregulated Legal Services Dept through the two AMPHs are opposing this strongly but what they failed in most of all is to take away my daughter’s capacity even with the massive increase in medication for this purpose she still says “i want to come home”. So the question is how very often does Elizabeth have to go into seclusion and be injected? From other patients I gathered it happened more than once a week. No doubt LPFT would have records of this but the CQC accused me of inundating them with complaints when in fact the complaints came from other sources.  

Because of severe neglect and bullying under ENFIELD we moved to Lincolnshire and now have built a separate living accommodation namely the annex.

It is clear Elizabeth wants to come home and has even on her own accord posted a prayer on Lincoln Cathedral’s wall.

I am saddened by having to write this blog even as we wanted to start afresh and hoped so much that we would be treated fairly in another area but sadly this proves that NHS Trusts and Council’s working together can be dishonest and corrupt and severely neglect a vulnerable person and I see this as abuse that needs exposing in order that improvements can be made and lessons learnt by both.

“It is looking more and more likely that Elizabeth will be given trial leave to supported accommodation.  She is entitled to this under section 117 having been on section 3. I will fight any such decision in court! hopefully a transparent hearing.

The leave can be between 3 months and two years and is contingent on the patient residing at the determined placement. 

The recent changes allowing Elizabeth short periods of unsupervised visits and trips out of Ash Villa suggest this is what they are moving to and they may already have a placement in mind.  (two have turned her down thankfully) – we just need a few adaptions to the annex which has already been built.

The patient is not discharged or on a CTO but is on extended leave under s.17.  This is subject to controls imposed by the clinical treatment team and the AMPH. A CTO, a disgusting weapon of abuse whereby; so called professionals can make threats and bully to their hearts content and I have all the paperwork to prove this fact which I can feature in my next blog. “I do now strongly suspect they have this in mind.  It is the best of both worlds for them.  They allow Elizabeth to leave Ash Villa and retain control over medication and supervision.” of which certain so called professionals such as AMHPs know absolutely nothing about.  

MotiVilla – multiply abused – all possessions of value missing.  14 year old drug dealer on site.Supposed to offer 24 hr care.

Phoenix House Northampton no food at the weekend yet rated good by CQC

Premier Inn Enfield Island Village –  moved from room to room – had to keep paying and then had to visit your department  to get the money back

Mays Cottage – Priory Craegmoor group –  broken lock to door of room- told to sleep on settee all night.  Resident drug dealer, resident bringing prostitutes in.  No supervision or care overnight.  Faced eviction because of another resident staying over from a related scheme.

Reservoir House  –  total breach of H&S –  five fumigations failed to stop bed bug problem which spread to all other residents.  Had to sleep on floor with damp sheets because of constant washing of clothes to try to stop the problem which persisted.

Solway Road–  temporary scheme without even a proper kitchen or lounge or garden to sit out in

Purcell House – the very best accommodation.   Independent Council Flat but no care act assessment or any S117 aftercare provided.

“The signal lack of interest in pathological causes for psychological dysfunction is a blight on psychiatry and every reason why all psychiatric patients should have regular endocrine function tests and neurological scans for dysfunctions in the amygdala hippocampus and pre-frontal cortex.  It is a blindingly obvious (except to many psychiatrists) precaution that pathological disorders should be screened for.” Yes how very true and this is what I have been trying to get in place for many years.

However, that legally invalid capacity report is in part good evidence
in your favour: it quotes Elizabethas saying that when she leaves the
hospital she “will go home to her mum”.

Presumably it is to do with the control of the aftercare.  They want to either discharge Elizabeth to sheltered accommodation or send her there on extended s.17 leave.

The failure to carry out a proper capacity assessment and the refusal to properly investigate potential medical conditions interfering with the treatment is staggeringly unprofessional.  If Elizabeth has an endocrine disorder and she almost certainly does. (as proven)  If she had inflammatory disorders they would interfere with the drug metabolism.  We already know she is a poor metaboliser but they continued nonetheless to treat her with medication that almost certainly would not work.  This should be thoroughly investigated and I suspect they do not want any **that might insist on it.  Like me!

The bottom line on the capacity issue is that while they maintain Elizabeth lacks capacity they will be able to perpetuate the myth that she cannot consent to here case being publicised. I am reading all my blogs to Elizabeth for her approval as I want her to know that she has my backing 100% and I feel that certain staff members are provoking her on the ward.

If Elizabeth does not want the ****** publicised she has that right.  It is the LCC and LPFT that actually want to hide things and they  are using Elizabeth’s erroneous lack of capacity to protect themselves.  That looks like an egregious abuse of process to me. And me too and I have written to those at the top of Trust and Council in this connection.

Clibbery is the authority   

Even where a case is heard in private, documents can be released to non-parties? Clibbery v Allan [2002] EWCA Civ 45, [2002] All ER (D) 281 (Jan) (a case cited extensively by Mostyn J in Appleton) concerned family proceedings heard in private. 

A circuit judge had refused to make an occupation order injunction (under Family Law Act 1996, Pt 4) on Ms Clibbery’s application. 

After the hearing she passed documents in the case to The Daily Mail. Mr Allan sought an injunction to prevent publication. 

How very interesting and notable. I’m all in favour of honesty and transparency especially if taxpayer’s money is involved.

 

I will begin writing what a wonderful time we have had together today in a fantastic place – a therapy centre situated quite some distance from the Ash Villa, Sleaford. I had five hours granted of S17 leave, much of which was spent travelling. I collected Elizabeth at 12.00 pm but was conscious that she would not have eaten anything. She was not even up and dressed when I called and was nervous about going initially. I did not pay much attention to the exact time I picked Elizabeth up to be honest but it is so regimented and strict with discipline that the attitude is you have to be back on the dot. This is what is called Section 17 leave and no flexibility but it depends on the member of staff, one in particular is a male nurse with good communication skills who took into account that Elizabeth wanted once to go to a garden centre some distance away but I was told 1 hour only by other staff members. It takes me 1.5 hours to drive there and another 1.5 hours to drive back. Elizabeth really enjoyed herself today and when we left she said she was hungry. There was nowhere in the area apart from 1 pub that had stopped serving food so I took her to a lovely place even further afield called Woodhall Spa and I showed Elizabeth the “Kinema” in the woods and we walked from there to the high street where they have wonderful shops many of which were closing being Sunday but fortunately I managed to find a place that was open. This is called the Inn at Woodall Spa. Realising that time was getting on I asked if they could provide a takeaway but decided to contact the ward to advise we might be a bit late as we were going to have just starters. The response was “I am going to have to escalate this”. This was a nurse who said this. I then said I felt really threatened by such words and asked was she going to call the police again for the third time? The Inn at Woodall Spa went out of their way to help and I would highly recommend not just the food but service.

We had no time to eat in there and felt obliged to make our way back to the car but at least Elizabeth had nice food to look forward to as all they get in the evenings in a sandwich.

Elizabeth wishes to share her views. I am going to make sure that she is heard loud and clear. “What shall I do about the noisy drawers in the medication room” “I’ve got an ?? idea I could go there and tell them that the drawers make a lot of noise but then again they are the only ones.”. I have promised Elizabeth I will feature such comments as this is not good to make a noise slamming drawers in the medication room.

“I really liked the day out today”. “I cant stand up any more for the injection so they are gonna have to do it lying down!!” “Not that I have an injection tod” I have just sent her photos of our wonderful day out.

“it is totally unacceptable” – her response to my comments that it would appear our battles are far from over yet.

On the way back home Elizabeth came out with random but interesting comments.

Elizabeth is on guard at the moment and it is no wonder way. There is a lot going on behind our backs right now. What is going on is a Care Act Assessment. From what I have heard is the former local area are involved but it has been sprung on Elizabeth very recently and she did not want to participate. That shows mistrust because after all the very many recent flawed capacity assessments on something I cannot talk about as I would end up in prison otherwise, it is no wonder Elizabeth does not trust anyone. It is a good job that she tells me what is going on and I immediately contacted Voiceability. They were advised by me that a care coordinator from Enfield who is well known to us wishes to carry out such tick boxing assessment. Looking back to 2014 “Deprival of Medication Community Care” case – Irwin Mitchell. This same person who wrote nastily for court purposes now is the care coordinator and the same person which according to my files recommended this assessment under MHA leading to 19 months imprisonment.

The other thing Elizabeth told me is that she has been told by the Deputy Ward Manager “You are Not Going Home”. So decided to put this title on my blog to inform the world especially as this is a very topical subject right now as Elizabeth is one of thousands incarcerated under the MHA in the most unsuitable environment of a locked ward which is far from therapeutic.

Elizabeth has also informed that the “Clopixol Depot” has recently been reduced by 100mg. That is an incredibly high drop. I am not a doctor but I am going to copy in Dr Moncrieff and others to check on this and I am not having it said that there is a relapse of so called “illness” when I have read up on the subject that any decrease or increase in medication can affect behaviour. We are still waiting for the MRI scan appointment and the Endocrinologist appointment and dentist after 19 months.

I feel in the mood for writing right now as I want to get the truth out there to as many people as possible. I know the team are reading my blog and feel honoured by this. I wish to advise the Government ministers what changes need to be made to the MHA – the system is not fit for purpose and as said at the CTR in Enfield “the whole thing stinks!” I am now looking at the response from CEO, SC of LPFT who has commented on concerns re Panorama and Dispatches “we are an open and transparent organisation and following these programmes we did contact families and carers of those on our wards to acknowledge how upsetting the documentaries were and provide an opportunity for them to speak to a service manager. Well I am speechless! Why haven’t I been contacted in this connection in that case? Then it is mentioned about “positive progress”. In 19 months of incarceration you would expect to see such positive progress – we have seen none except resilience from Elizabeth despite the mountain of drugs given at one time which led to several patients approaching in the grounds outside voicing their concerns and telling me they were doing the safeguarding. I still cant believe the enormous increase from 300mg fortnightly to 400mg every single week plus 10mg on top and all the frequent rapid tranquilisations. That sounds more like torture to me. Now with a new doctor appointed he had started to give leave unlike any of the following doctors:

Dr Shahpasandy

Dr Ismail

Dr Kumar

Dr Islam

Dr Suleman

I will not name the new doctor because he is being fairer but that does not mean I am at all happy. I am also on the receiving end of heart-breaking messages from Elizabeth which, in accordance with her wishes, I will be openly sharing.

I am glad that Ms Connery mentions “we understand and appreciate that Elizabeth would like to be at home and we are working hard on making preparations for this to happen. This is very contradictory to what the Deputy Ward Manager has just said to Elizabeth and I will not have it said that Elizabeth has got this wrong.

As for “escalation” for being 22 minutes late do you think I am over-reacting?

I would love to hear the comments of my readers after all how comes Police were called twice on me by Ash Villa staff whilst I stood alone under CCTV and then I was accused of assaulting a member of staff. What a lie! Quite rightly I have asked for all the footage so I can share this with my readers. For this I have had to contact the Police themselves and of course there is nothing to show or even the recordings of my alleged threatening behaviour. I find it quite amusing as this reminds me of Cygnet accusing me of “impersonating another mother” via their solicitors. Then I got a threatening letter from the Police. The letter was dated a year prior to when it was posted lol! I never heard anything back from these solicitors about the recordings and this is something I am also awaiting from Lincolnshire Partnership Trust. “Thank you for sharing your constituent’s concerns. I would like to assure you that the Trust is working closely with our NHS colleagues and are continually reviewing Elizabeth’s care to provide her with the most appropriate support and treatment. Like now? Where is the psychologist??? Why is there such staff shortages? Why do you use caged vehicles? Why has my daughter been treated like a restricted prisoner and me like a criminal. Now as someone who is involved in reviewing services myself I can say that I have seen high quality in care but what has clearly been going on here is abuse of power and breach of human rights.

It is not just down to the psychiatrist but a team of 29 and the only positive thing is that they are supporting the former area.

I will keep you informed.

Elizabeth would like to share some positive thoughts today on Easter Monday and here is her consent in case anyone from the Team is reading: “yes pl to positive messages!

“Hello mum I really enjoyed seeing you tod let’s keep in contact because you are my friend I love you with all my heart. I’m having a Chinese fillet steak mixed veg spring rolls chicken sweetcorn soup.” “I will be extra vigilant with paperwork.” Apparently Elizabeth mentioned about some forms which were presented to her from a social worker attached to the hospital – something to do with care? Apparently according to Elizabeth the former area tried to carry out some kind of assessment? – most probably the Care Act Assessment they failed to provide for many years from the minute Elizabeth acquired the independent council flat.

Anyway, we have had a lovely day and the weather has been very mixed but at least the sunshine came out.

Elizabeth was concerned her phone was not working so we got this sorted out, then the broken glasses, then on to Costa Coffee and to a very nice wine bar that did nice food, then shopping in Sainsburys, then a short walk along the river so Elizabeth could admire the birds and ducks and the day went quickly.

I am hoping to take Elizabeth to this wonderful place where there are miniature horses and you can stay overnight. I will take her to have a look first of all and maybe it will be possible to pop in to the care farm which again is on the way.

There are so many wonderful places to see that I would like to take Elizabeth to, especially Lincoln to the Cathedral where Elizabeth wrote the following prayer. Now since last year when treated like a restricted prisoner, things are getting better but Elizabeth is quite right when she says she is being very vigilant as regards paperwork and I would applaud that especially with all the dubious things that have been going on over the past months.

I have since written to the Leader of the Council and I am now going to respond to the letter from the CEO of the Trust and I am waiting to hear more about the provisions which ENFIELD COMMUNITY REHAB TEAM should provide in terms of adaptions which is far more important than the questions below. It is a bit late now for a Care Act Assessment that considers these points after all these years and much of the questions do not apply so this shows how dated and ridiculous the current system is. It would appear this is all about tick boxing and there is no way that tick boxing is in any way appropriate in this case where there has been severe neglect and not by family.

1. Managing and Maintaining Nutrition   
2. Carrying out Personal Care                      
3. Managing Toilet                                                        
4. Being able to make use of the home and other environment
5. Relationships with Family/Friend            
6. Accessing and Engaging in Work, training Education ETC not possible due to substantial decline
7. Being part of the Community including making use of facilities
8. Carrying out tasks of being a parent       

I wish to share the following which is applicable to all vulnerable people treated like prisoners for years on end in secure hospitals because they have autism or learning disabilities:

Dissociation and hostility are not indicators of psychosis in this contact but a sign of perfectly understandable anger and fear of a foreshortened future.  This is common in people incarcerated and robbed of the last vestige of dignity and hope.  

How very true!

Wouldn’t anyone experience ‘dissociation and hostility’ if someone locked you up, spied on your every move, intruded in family visits and neglected proper care and medical treatment.

“She has on a number of occasions, been so distressed that she has had to have rapid tranquilisation administered. She has also had to be placed in seclusion. It must be stressed these measures are to ensure her safety. Trust policy is adhered to, and the measures have only been undertaken after less restrictive options have been exhausted.  

As said by the independent chair of the CTR “The whole thing stinks” and in respect of the above comments I would add “RUBBISH!”

There seems to total lack of insight at LPFT and LCC plus ENFIELD CC and BEHMHTNHS.

I shall be revealing the full extent of this lack of insight within this blog as well as power abuse by Council and Trust. I look forward to sharing anyone else’s shocking experiences too as I naively thought and hoped by moving that we would be treated better but now there is double trouble with two areas to deal with.

I wonder what the forms were all about – Elizabeth said she was not feeling well at the time and wisely refused to sign and in any case it is important that an advocate be present when it comes to something as important as a Care Act Assessment or care provisions. I immediately contacted Voiceability when I heard from Elizabeth about this.

The other – capacity assessments. Oh my God! There needs to be a complete overhaul of policy as regards this. No capacity assessments should ever be conducted by members of staff who are involved in care surely this is totally wrong. It should all be independent as this is conflict of interest. I will be writing about flawed capacity assessments next time and the abuse of power by Councils and Trusts.

There needs to be Open Dialogue not secret MDT meetings including 29 without family present. A Care Act Assessment needs to be done fairly but nothing has ever been done fairly by the former area. Best Interest assessors should be abolished as they do not have a clue what is in best interest and if they are not medically trained they should not be carrying out anything of the sort just so as to decide what THEY dictate is in best interest when it is obvious to us all in the family that Elizabeth has full capacity – full capacity to say:

“Go away” and “it’s nice weather today” or “no comment”. I’m afraid you have failed in this respect LPFT and I will advise more indepth about these assessments and the disturbing way they try and manipulate the process and abuse power.

From: HSCA_Compliance <hsca_compliance@cqc.org.uk>
Sent: Thursday, July 28, 2022 3:40:29 PM
To: susanb255@outlook.com

Subject: FAO Susan Bevis – Correspondence – Ash Villa – ENQ1-13580144066 – DB

Dear Mrs Bevis,

Please find attached your Correspondence regarding Ash Villa. If you have any queries please do not hesitate to contact us.

Statutory requests for information made under access to information legislation such as the GDPR and the Freedom of Information Act 2000 should be sent to: information.access@cqc.org.uk

Kind Regards

David

Inspection Support Team Co-Ordinator

For information about CQC, including contact details, information about how we use and protect personal data, and how to request information from us, go to https://www.cqc.org.uk/contact-us

Letter attachment below dated 28 July 2022

Mrs Susan Bevis Delivered by email Ref: ENQ1-13580144066 28 July 2022   Dear Mrs Bevis     I am writing to inform you the frequency, duration and nature of your communications has caused disruption to our business and distress for CQC team colleagues.   Why should it cause distress when they are assigned to deal with complaints that could result in someone’s life being saved who is recorded as being of “high risk of mortality” to the point Fire Brigade and Ambulance have been notified.  Notably David refers to the CQC as a “business” and so this is how the CQC view requests for them to intervene and how they dismiss them.  Surely that is what they are assigned to do and that is investigate concerns.   Between January 2022 and June 2022 you raised a significant number of enquiries with the Care Quality Commission regarding the care of your daughter Miss EB staying at Ash Villa a rehabilitation ward within Lincolnshire Partnership NHS Foundation Trust (LPFT). The Call handlers who you have contacted have passed on your concerns to the Inspector for review; in turn the Inspector has passed your concerns to the trust. In many cases the trust were already aware as you have copied them and were already dealing with your concerns. The information you have shared is repetitive and similar information to that you sent to us previously. Our Inspector has liaised extensively with the trust and is satisfied the service have taken steps to address your concerns.      The calls did not come from just myself but from EB herself and others.     We understand Miss EB consistently says that she does not want staff to share information about her care and treatment with yourself or any concerned parties. Miss EB does share information herself with you. The trust have set up an identified single point of access at Ash Villa; and a dedicated email box with the trust. The CQC cannot investigate your individual concerns further. We are sorry that we were unable to assist you further on this matter, and now consider it closed.   EB shared her own dismissive response from CQC, until her phone was taken away for monitoring and supervision purposes by Ash Villa staff then we had no choice but to have to go through the ward which has brought no end of inconvenience and upset to entire family.  EB now wishes to waive anonymity to highlight what is going on under the shocking “care system” of the UK.     You can however contact The Parliamentary and Health Service Ombudsman who will be able to offer advice and assistance to you regarding your complaint. Their contact details for ease are on the phone via 0345 015 4033, or www.ombudsman.org.uk/making-complaint. Which we have done.     In view of the previous communications between yourself and CQC, if you do need to contact CQC in the future, we ask that you make any communications in writing initially by letter. If you do telephone the CQC there will be a voicemail service where you will be able to leave your concerns via voicemail. Based on the new information shared we will decide whether to respond directly to you, or instead may approach the relevant healthcare provider. This decision will be as appropriate to follow up on the information shared.      I will not be bothering.  The only time the CQC respond effectively to facilities they rate as good is when abuse is revealed by TV programmes like Panorama or when someone has died under care.  No-one has signed the letter that David has sent notably so I am assuming it comes from him.     Yours sincerely,  Inspection Team