WARD ROUND AND THREAT OF MOVE TO EAST YORKSHIRE BY DR WAQQAS KHOKHAR

I wish to share with you some of the emails I have today been writing in sheer desperation on behalf of my vulnerable daughter and I also wish to share with you her most recent comments and wishes which are being totally ignored by these people:

CASTLE WARD

To: KHOKHAR, Waqqas (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); TANIMOWO, Adekiite (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); KHOKHAR, Waqqas (LEICESTERSHIRE PARTNERSHIP NHS TRUST); CALDERONCARHUARICRA, Katteryne (BARNET, ENFIELD AND HARINGEY MENTAL HEALTH NHS TRUST); BARFORD-COWLEY, Amelia (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) Cc: AITKENHEAD, Angela (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Barker, Robert (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Barlow, Diane (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); BELLAMY, Charlotte (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); CAMSELL, Lucy (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); FISHER, Bridgette (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Fitzpatrick, Brenda (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); FLETCHER, Sue (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); GOSTELOW, Joby (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); JAQUES, Anthony (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Keogh, Sophie (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); LAKE, James (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); MARABADA, Ngonidzashe (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); MOONS, Kashmir (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); POPOOLA, Tomilayo (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); SCOTT, Emily (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); SENDALL, Jackie (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Skelton, Alice (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); SUNDAR, Siddharth (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Tarling, Paul (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Waby, Lucieann (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); WALLACE, Sarah (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); White, Jocelyne (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST); Woodlock, Emma (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST);

These people above are what is known as the MDT (Multi-disciplinary Team) and personally I think there are far too many strangers amongst them to be involved in making decisions on behalf of a vulnerable person who should have been offered a CTR (Community Treatment Review) in the first place but this was denied to Elizabeth under LPFT. At least a CTR with independent Chair is a fairer option. What chance of fairness could ever be found from these people above under LPFT where there would appear to be a culture of bullying and as such who would even dare to challenge because when you do like I have you become a target of bullying and punishment dished out to you and that greatest punishment of all is to deprive you of contact with your vulnerable relative. Elizabeth used the word “punishment” today and said that she is being punished. She has made it clear to so many her wishes to come home, to see her cat and be closer to the family but instead this team of strangers have come up with East Yorks and yet another hospital. What a shambles.

On the other hand it could be because they want to take her away from this area because it has come to light there has been an accident at Ash Villa where Elizabeth hit her head on the floor in the seclusion room whilst on God knows how much drugs causing her to feel dizzy and lose her balance and to think they tried to cover it all up. What a disgrace.

Amongst the attendees above are my former shocking area of Enfield namely BEHMHTNHS equally as bad and still involved because of S117 aftercare.

During my visit to Castle Ward supervised 2-1 by HCAs and witnessed by a horrified friend Elizabeth wrote on a piece of paper her wishes:

“I want to come home to live with my Mum in the annex through the Court of Protection. I miss my Mum greatly and want to go home to her.”

How very cruel that Elizabeth’s wishes are ignored by so many but I supposed if any of them dared to challenge it is more than their job is worth. I have even heard this said previously at a shocking good for nothing care home in Northampton by an RMN rated good by CQC yet she had no food at weekends in the files and I can share proof of that with all of you too.

I am still awaiting the CCTV footage of my alleged aggressive behaviour but will be waiting a very long time as there is nothing of course. It is just bullying because I turned up at Trust HQ and dared to complain about Dr Khokhar’s decision to cut all leave which was only granted on one occasion after months of imprisonment and total abuse of human rights. That leave was only 2 hours in grounds outside and extended to local area of Lincoln where Elizabeth thoroughly enjoyed going to a shopping centre called Carlton.

Since that one time things have gone from bad to worse. The entire family know about the accident now which happened some months ago and during the time at Ash Villa a bit more leave was granted up to 6 hours which worked well as I could take her out and show her the wildlife parks and a few nice things in the local area. During this time as a surprise I booked for Elizabeth an MRI scan which is what she always wanted and she did very well and lasted most of the duration for images to be taken in the mobile unit in Sleaford, Lincs.

I sent the scans to experts working on research of various kinds and a team of colleagues looked at the scans and identified several things in need of further investigation despite the scan amazingly stating “normal”. I wrote back to the organisation conducting the scan to the Radiologist and have not had any reply when I questioned why the scans said normal. They clearly are NOT normal. I was told at the time by various doctors/clinicians that no MRI was needed and that scans done in 2015 were normal. So I want all my readers to know that you cannot go by NORMAL! One of the images was even marked as “historic trauma” – the fact is they were all denying her the appointments with a neurologist and it is only because I made such a fuss about it and shows them the scans plus the comments made by an expert that finally LPFT have provided a scan and referral to a neurologist however today I contacted the care quality commission as it was also mentioned at Ward Round that a SOAD should be appointed. I wrote to the care quality commission and told them that Elizabeth should NOT be moved to another facility far away when she has been referred to a Consultant Neurologist and no way on earth should their SOAD look at the current treatment until Elizabeth has seen the Consultant Neurologist as how can a SOAD give any opinion if the diagnosis of schizophrenia is totally completely and utterly wrong.

Here is why Martha’s Rule is so very important and needed in that certain doctors wish to stick with out of date questionable diagnoses completely overlooking physical health concerns and file content that goes way back stating “Anterior Region Medial Temporal Compromise” plus the discharge note stating “abnormal findings on a scan”. Who can you trust except your instincts as a mother/relative in providing privately what was needed all along – an MRI scan which simply cannot be argued about as this is fact not assumptions.

Only one of ten doctors so far and from Cygnet in Durham really showed an interest in physical health and most probably would not have refused to do a scan.

So here are some of the emails I have written today which show what lengths I have had to go to to try and get the right care and treatment despite being cut out of everything and simply based on fact by way of the MRI scan I had done privately:

From: susan bevis
Sent: 15 November 2023 19:15
To: CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) lpft.careconcerns@nhs.net; victoria@victoriaatkins.org.uk victoria@victoriaatkins.org.uk; Christopher Reid Chris.Reid@parliament.uk; Enquiries Enquiries@cqc.org.uk;

Subject: Ward Round and Proposed Move to East Yorkshire
 
Dear All

I was talking with Elizabeth earlier today who did not feel very well unsurprisingly.  She has been treated like a restricted prisoner for c 2 years now, not allowed leave and now with the threat of being sent to East Yorkshire to yet another institution right now.  Great damage is being done to my daughter being held on various acute wards after all this time when she would be better off at home in the right environment.

Elizabeth now suffers from fits lasting hours and a hospital is completely unsafe as the floors are hard and she has hurt her back and she has hit her head badly on the floor of the seclusion room.  The annex is far more suitable and in a peaceful environment.   We should have been notified of this accident under Regulation 20 H&SCA Regulation 14 and that goes for every time she is rapidly tranquilised and now I have the CP11 Policy document which I intend to read thoroughly as I am concerned to read about blood oxygen levels being low and that is harmful to my daughter. 

Not only has no-one stopped to consider her feelings or that of any family members but they have treated Elizabeth like a vegetable on account of three flawed capacity assessments (not fit for purpose) but what of the CoP assessments?  they were done at the same time (2 of them) by assessors who came to Ash Villa and they did not state ‘no capacity’ did they!  Now that I myself am training to be a Best Interest Assessor I can see that nothing is being done correctly under LPFT. Elizabeth clearly has capacity and this matter needs to go before the Court of Protection in accordance with Elizabeth’s wishes.     I have a note witnessed by CM during her recent visit that states “I want to come home to live with my Mum in the annexe and through the Court of Protection.  I miss my Mum greatly and want to go home to her”.  Elizabeth has also tried to arrange a capacity assessment herself which I was prepared to pay for however Ms Sharon Harvey, Director of Nursing has offered to provide an independent capacity assessment and Mr Fahy a CTR independently chaired.

I do not like the way LPFT are ignoring my daughter’s wishes.   LPFT failed taking away the POA despite attempts trying to label myself and Mr Bevis as abusive yet again.  You succeeded in the closed- door county court to get rid of me behind my back and Elizabeth in the most deceitful manner backed by the council and their legal department.   That is another matter because clearly there is a culture of bullying under LPFT but yet 1 person retains overall control and yet sending Elizabeth away, so far away from home and family it is made out to be an MDT team decision.   In the middle of all of this is my vulnerable daughter who has phoned me today stating she feels she is being abused and she is correct.

The words “you have schizophrenia” are constantly expressed to her when Elizabeth (not me) states she is autistic and YES YOU CAN provide an assessment on that.  Nothing has been done properly there either. 

We came here to Lincolnshire to provide a more suitable home which is now built and completely independent.  We came here with the intention of working with professionals rather than against them but now LPFT have gone too far in ignoring my daughter’s wishes and I do not intend to stay silent about this or do nothing.

If LPFT are intent on severing contact between myself and my daughter then where is the consideration to the rest of the family.  If noone thinks I am suitable to be near my daughter what about the rest of the family who reside in Norfolk?   Why send her to East Yorks when she could either be nearer home so she can see her cat who she misses or else be moved to Norfolk?   You can be sure of this I intend to challenge this in the Highest Court which will reveal a lot about this area and how human rights, MCA and MHA law have been abused/ignored and the shocking way they treat vulnerable people and their families, breach of law re MCA and MHA also and breach of LPFT Policy.  

If Elizabeth was allowed to come home and said she did not like the annex and wanted to go elsewhere then that would be her decision.  There also should be a choice of three placements but because of the flawed capacity assessments this is being prevented as she has been stripped of her autonomy in the most dishonest and disturbing manner that warrants a full external investigation. 

Because of the private scans I have had cause to question the diagnosis with good clear evidence.  Scans said to be “normal”  however when questioned the radiologist remains silent with no response to my emails. 

The scans I had done are with various experts in the field of neurology right now and Elizabeth has written a letter of consent to share the opinions with the Cavernoma Alliance 

Since moving to this area LPFT have cancelled all pre-arranged neurologist appointments stating they are unnecessary which is very strange since the discharge note points to abnormal findings on a scan.     

IMG-0003-00001jpeg. (their reference Im: 7/24) shows the curious straight line going from the right temple radiating backwards at about 60 degrees to the lateral line of the skull. On the opposite side you will see a dark area corresponding to just behind the left ear.  

On IMG-0004-00001jpeg. (their reference Im: 11/24) there is another curious dark line behind the right eye.  You need to ask what they think these images are showing. Are they potential lesions? 

 On IMG-0005-00001jpeg. (their reference Im: 26/96) the scan refers to >55 years old trauma.  What are they referring to here?

Cavernomas

 Cavernomas are vascular malformations that have been associated with psychosis as well, especially in the setting of hemorrhagic transformation.

 That dark patch on Elizabeth’s temporal lobe looks suspiciously like one.

 
The article is about a young man presenting with psychosis and aggression.  He was found to have two cavernomas and you can see them on the scans in the article.

 It is possible that the reason why cavernomas are relatively rare is that the misdiagnosis of schizophrenia is masking the actual incidence in the population.  Since psychiatrists are so reluctant to allow patients to have brain scans many of these may be going undetected.

Clearly you need to get Elizabeth properly examined by a neurologist to determine if that indication on her brain is indeed a cavernoma or any other type of lesion. 

Neuroleptic medication will not treat these lesions and could potentially make them worse since it can cause inflammation.  

I took note that you mentioned that Elizabeth has a large sebaceous cyst on her head.  This is well associated with the long-term use of neuroleptic medications.

That also needs a medical appraisal done.  This is not simply a cosmetic ADR but indicates a potential endocrine disorder linked to her inability to metabolise drugs.

Incidentally this has also been known about for years.  Sebaceous cysts are NOT benign.  For one thing they may mask subdural lesions and inflammation making them difficult to define. I am told that nothing will be done about the sebaceous cyst and am really unhappy about the slapdash way they go about things refusing to look into pathological causes.

 It is rather odd that the scans are referred to as ‘normal’.  Decreases in grey matter are associated with neuroleptic use and certain areas of the brain are more affected than others. Most of the literature refers to severity of psychotic symptoms and dosage of neuroleptics to be directly associated with brain grey matter loss.  Since those with the most pronounced psychotic symptoms are given the highest doses of drugs and often dangerous concomitant medication it is not surprising that both contribute to brain atrophy.

The psychiatrists have classed Elizabeth as being towards the most severe degree of psychosis and have heavily and concomitantly prescribed neuroleptics to address this.  There is in fact little evidence that correlates dose with severity of psychotic symptoms.  Many patients with severe psychosis have responded to low doses of neuroleptics and the difference in response is more likely to be associated with the patients ability to metabolise than the dose volume.  It is here of course to be noted that the medics have been ignoring that for many years and have only just (reluctantly) accepted it. Very strange indeed as in Australia no sign of psychosis mentioned.

Elizabeth has of course now been subjected to many years of medication and structural changes in the brain resulting from it are likely to be irreversible along with the other long term ADRs associated with neuroleptic medication.  Her reduced capacity, which they put down to a low baseline IQ is far more likely caused by the long term structural changes to her brain, in particular grey matter atrophy.  Baseline IQ is in any case an anachronistic measure of a patients capacity and is highly inaccurate and riddled with confounding variables.  

 I have attached a set of scans that show where brain atrophy occurs as a result of neuroleptic medication (green spots) 

 There is also the mater of inflammatory complications. The inflammation can come and go and is likely to be pronounced in psychotic episodes.  They have not over the years seemed to consider this at all in spite of the large amount of studies published in the medical literature.  It is firmly established that inflammation can cause psychosis and that it can interfere with the uptake and metabolism of the drugs.  Personally I am astonished that this is in the main simply disregarded, just like to P450s were for decades.  So am I astonished.

I was fascinated with Dr Shahpesandy’s bizarre doublethink on inflammation.  On the one hand in his publications he fully acknowledges it it but when treating patients he completely disregards the findings of his own research.  

The orthodox medical obsession with so called chemical imbalances ‘treated’ with neuroleptics completely blocks out numerous pathophysiological contributing factors and possibly even causes of psychosis.  It is virtually medieval in its approach and shares more in common with cult beliefs than with science.  
 
Ignoring pathophysiological symptoms and markers is utterly absurd in any diagnostic system let alone the potential for consequences of ignoring them when administering medication. 

Refusing Elizabeth and other patients access to properly conducted tests and analysis is a scandal on a huge scale.  But of course they find it much easier to label people with catch-all and non -specific stigmatising terms like schizophrenia.   The reason I am being bullied by this team is because I have dared to request the real diagnosis now that I have significant proof by way of scans and it has been a nightmare to find that second opinion I need urgently before Elizabeth is moved on by Dr Khokhar and team which I hope will not be prior to Xmas depriving her of being with her family as well as depriving her once again of pathological tests and seeing her Consultant Neurologist who Elizabeth has shared with me is a Doctor C Solinas who holds clinics at Lincoln County Hospital. Elizabeth has also shared the date and time of the appointment which is on 3 January. I have just written to Dr Solinas to share the private scans and now there are more said to be normal when they cannot possibly be normal – it is as though the NHS is deliberately trying to cover up things like cavernomas and lesions as well as inflammation of the brain under the label of “normal” but luckily I am not so easily taken in and look well and truly beyond this as something must be wrong if Elizabeth is having fits that last for hours and hours on end and result in dangerously high blood pressure and low blood oxygen levels that could be fatal.

I wish to congratulate Victoria Atkins on her appointment as Health Secretary and am copying her in to this email.  I hope this example can be studied in terms of improving a system not fit for purpose and devoid of human rights.  

I do not know when you are going to send my daughter away yet again to another facility where it is noisy and hope it is not before Xmas as she wants to see her family and nothing is being mentioned about that.   She is suffering the effects of headaches, pain to her eyes and dizziness which led to an accident at Ash Villa.  She suffers anxiousness because of the uncertainty of her life which has been turned upside down as ours has.  She is subject to frequent rapid tranquilisation and I would question with the CQC to check the RT log and whether procedures are carried out correctly.

I have now proven that there is something else wrong with my daughter of a physical nature that needs further investigation but what is so bad are the lengths I have had to go to in respect of even getting her a referral to a Consultant Neurologist because I am not against treatment of the right kind but can see my daughter is suffering right now on a massive dose of drugs being treated for schizophrenia when it is likely she has a cavernoma and lesions plus inflammation of the brain.  She has also been denied endocrine test and immunologist tests.   She has sensory issues and is held in a most noisy acute facility and is being injected on a frequent practically daily basis despite the fact that MRI scans point to certain images being suspect of cavernoma, lesions and past trauma.

Last of all Elizabeth should NOT be sent anywhere until she has seen the Consultant Neurologist Dr C Solinas and it is not a case of the SOAD just checking on her medicine treatment as how can they do so until she has seen Consultant Neurologist Dr Solinas on the 3rd January.  Elizabeth has shared her appointment letter so I know all about it.

I would like confirmation from someone that my daughter will not be sent far away before Xmas and prior to her Neurology appointment with Dr Solinas against her wishes.

Yours sincerely

Susan Bevis   

I wish to share with you some of my concerns and why I have been copying in the CQC and why everyone with similar concerns should obtain their Trusts CP11 Policy on RT where applicable.

“Lowered oxygen availability (hypoxia) is theoretically important in the consideration of pharmacology because 

(1) hypoxia can alter cellular function and thereby the therapeutic effectiveness of the agent, 

(2) therapeutic agents may potentiate or protect against hypoxia-induced pathology, 

(3) hypoxic conditions may potentiate or mitigate drug-induced toxicity, 

(4) hypoxia may alter drug metabolism and thereby therapeutic effectiveness, and 

(5) therapeutic agents might alter the relative coupling of blood flow and energy metabolism in an organ. 

The prototypic biochemical effect of hypoxia is related to its known role as a cofactor in a number of enzymatic reactions, e.g., oxidases and oxygenases, which are affected independently from the bioenergetic effect of low oxygen on energetic functions. 

The cytochrome P-450 family of enzymes is another example. Here, there is a direct effect of oxygen availability on the conformation of the enzyme, thereby altering the metabolism of drug substrates. 

From: Hypoxia—implications for pharmaceutical developments.  Sleep Breath. 2010 Dec; 14(4): 291–298. Published online 2010 Jul 14. doi: 10.1007/s11325-010-0368-x

Psychosis Due to a Medical Condition
This diagnosis is made when a patient’s medical history, physical examination, or laboratory test results suggest that one or more medical conditions have caused brain changes that might create psychotic symptoms*, and those psychotic symptoms (e.g., hallucinations, delusions) are in fact present since the medical condition has occurred. 

A surprisingly large number of different medical conditions are capable of creating psychosis. Neurological conditions that may cause psychosis include brain tumors, cerebrovascular disease, Huntington’s disease, multiple sclerosis, epilepsy, auditory or visual nerve injury or impairment, deafness, migraine, and infections of the central nervous system. 

Endocrine disturbances include increases or decreases in the activity of the thyroid, parathyroid, or adrenocortical system. 

A decrease in blood gases such as oxygen or carbon dioxide or imbalances in blood sugar or electrolytes are some metabolic causes of psychosis. Finally, autoimmune disorders with central nervous system involvement such as systemic lupus erythematosus have also been known to cause psychosis.

Psychosis caused by a medical condition may be a single isolated incident1 or may be recurrent, cycling with the status of the underlying medical condition2. Although treating the medical condition often results in the remission of the psychosis, this is not always the case. Psychotic symptoms may persist long after the medical conditions that have caused them are cured.

*Single doses of psychotropic medications can cause brain plasticity changes.

1 Such as those causing PTSD.

2 Caused by incorrect titration of psychotropic and neuroleptic medication

The other thing I have done is give one month’s notice under a GDPR request since I am being labelled in a defamatory manner made out to be aggressive hostile and threatening. I will let you know the result in due course but I am once again still waiting for the CCTV footage which could not be produced in the first instance so in that case I will want alterations done to the file records and for this I have written to both areas, both Enfield and LPFT Trust and Councils.

I will finish by saying it is the ultimate punishment to deny contact and impose restrictions such as 2-1 supervised visits. It is an infringement of human rights. Unless there are concerns of harm towards a vulnerable person by violence then there is no cause to impose such restrictions and any safeguarding should be done in an open and transparent manner. It would appear that such punishment is being dished out to cover up failings and try to protect certain professionals and to isolate a vulnerable person denying her with the sort of emotional support she needs. It is inhumane to emphasise with a patient – total abrogation of medical ethics. What LPFT are dong is isolating Elizabeth from anyone who can offer her real support, an appalling and egregious abuse of power. I would accuse LPFT of not wanting Elizabeth to develop long term friendships because they give her personal support. For instance she has made a new friend who is helping her on the ward right now.

It is not that I am a danger to Elizabeth they wish to move her far away as yet more punishment it is because Dr K thinks I am a bad influence when they try to play on no capacity so if Elizabeth is considered to have no capacity to the point the team have to decide everything they think in terms of their own best interest abusing their power and control stating she has no capacity yet how then can I be of any influence if she has no capacity. Utterly ridiculous.

Elizabeth’s request for another RC has been ignored and it is most disturbing at reading more file paperwork today that something needs to be done to stop this abuse right now.

When I suggested too high a dosage this is being ignored and so is the sebaceous cyst that needs to be removed.