“Wish not allowed” by HEALTHCARE ASSISTANT Rachel.

Healthcare Assistants have mainly been put in charge of supervising and making notes during my highly restricted visits to see Elizabeth only allowed once a week for one hour only, dependent on staff availability to supervise; it has often been mentioned there are staff shortages on the ward and that can dictate whether you get a call back or whether Elizabeth can go to the hospital shop.

I have not spoken to Elizabeth for several days. I do not phone every day. The phone has confiscated from Elizabeth and put either in her locker or office. This is done to limit and deprive family contact and isolate her from the outside world and aimed primarily at me but affects the entire family. The last two phone calls were not returned and it has been said that “I will see if she wants to speak to me” and it has also been said that it is up to her if she wants to ask for her phone. Today I have contacted the ward as a transaction appeared on her Revolut Card for a new pin number. All orders of food and all orders of takeaways are done with assistance of staff. Elizabeth is never alone with her phone and it is most concerning when no calls are returned and no answer from the only email address with regard to a visit and I have just written a fourth time. Elizabeth has been deemed to have no capacity but what the team are doing is to facilitate that view by not allowing her contact with anyone from the outside world. Elizabeth is 37 and it is a disgrace on LPFT they treat her little more than a vegetable and did 3 capacity assessments to state “no capacity” just to get rid of me as the nearest relative. I telephoned the ward as I wanted to see if she was OK, to update her on a few things and to ask whether she received the shopping I brought to Castle Ward, Peter Hodgkinson Centre, Lincoln County Hospital, Lincoln LN2 5QY following my last visit on Wednesday last week since I did not have time to do the shopping prior to my visit.

I did not get the name of the person I spoke to previously but that person said she would pass the message on to my daughter but I did not receive a call back and then yesterday I spoke to Rachel who used the words in the title of my blog. This kind of approach has been relayed by others too.

Today I spoke to this same HCA who has previously supervised my visits on a 2-1 basis, taking notes. I am treated like a criminal and differently to other carers and rest of the family. This is discrimination under the Equality Act 2010. It is also highly intrusive, degrading and undignified. Rachel, like the majority is doing her job as instructed. It is not just HCAs but nursing staff and other doctors who are expected to do as instructed by certain Officials desperate to keep rigid, restrictive control in place for the most disturbing reasons, against the law and guidelines, own code of conduct and human rights done no doubt to protect themselves right now. Her response replicates others who entirely forget their training and code of conduct and do not raise a voice of concern. Even the Trust’s own values as follows are ignored and disregarded in their conduct:

• Compassion: Acting with kindness
• Pride: Being passionate about what we do
• Integrity: Leading by example​​​​​​​
• Valuing everybody: Using an inclusive approach​​​​​​​
• Innovation: Aspiring for excellence in all we do
• Collaboration: Listening to each other and working together

“I will see if she wants to speak to you“. A typical response with disregard to any carer who is treated like dirt under LPFT who have dared to raise concerns. It is like a ‘slap in the face‘ for a parent/carer to be told this by a Healthcare Assistant or member of nursing staff following orders. This approach is not emphatic or compassionate in any way whatsoever, which appears to be the overall nature of this Trust from our experience. It is obvious what this ward is doing and that is to discourage, distance and isolate a vulnerable patient from having contact with her mother, impacting on all the family and the outside world. Whilst certain Psychiatrists may disapprove of her mother they have acted against their Code of Conduct to go down the legal route rather than medical, their priority to try to take the POA for Health and Welfare as well as the role of nearest relative at County Court level in which they enlisted the help of Lincolnshire County Council. Dr Shahpasandy even said “I am displacing you as NR”. I was cut out of all meetings and Tribunals and eventually the same heavy restrictions were put in place with 2-1 supervision and phone taken away by Ash Villa.

The question is why?

I leave it to you to keep an open mind but my treatment is commonplace to anyone who dares to challenge these “professionals” even if totally justified.

My response to those comments of yesterday was total despair. I cannot think of a greater punishment by “professionals” who act in this way using their enormous power to destroy people’s lives. There is no accountability to such individuals. It is insensitive the way this Trust deals with parents and carers who have every justification to question matters right now. To leave a vulnerable patient to go downhill to such an extent is abuse and yesterday I played back the many recordings I have kept of Elizabeth, some of which are quite disturbing and point to abuse – Organisational Abuse. I have seen how things work at the very best of standards as I have for the past three years worked as a Carers Rep and been involved in reviews of MH services for accreditation purposes but I cannot see any quality or standards in this area where bullying and threats are used by those at Executive Board Level. In this respect I would comment there is/has been/gross conflict of interest and therefore what can you expect but insensitive, dismissive responses to complaints and concerns by Pals and of course the CQC who they are well in with – others are on the Board of the ICB.

There are Carers Champions who clearly work within a system not fit for purpose that splits and divides families, isolates the most weak and vulnerable people in society, their vulnerable families subject to abuse and the knock-on effect of deprival of contact too. In this area alone they are doing a good job of that. When I moved I was keen to get on with people and not complain but was subject to severe bullying from the very beginning.

When each and every person under the so-called MDT is reliant on backing from one another and instructed to act ultra vires against Code of Conduct this shows a culture of bullying with staff just going along with things for the sake of their jobs, without raising concerns.

It is not just Rachel but each and every one of the staff involved in my vulnerable daughters “care” are all instructed to act accordingly.

The person with overall control is Psychiatrist Dr W K (one of ten) but you need to look further because at the top of the Trust Executive Board there is conflict of interest and it is no wonder that you get nowhere if you raise concerns, especially when certain people have held the role as “Executive Reviewer for the CQC and Specialist Advisor”. With this power and backing each and every one of the staff are fully protected because the agencies concerned ie NMC, especially GMC, Social Work England and CQC do nothing to protect the public and it is rare that you can win an Ombudsman complaint. Having said that the NMC is looking into an incident at the former hospital where a nurse shouted “you have just assaulted a member of staff, Ms Bevis” whilst I was standing under CCTV which would have captured everything if at all true!. As regards Ombudsman I did win a past complaint on safeguarding under the former area of Enfield when Elizabeth picked up the minutes and gave them to me of a S42 meeting going on behind my back. They had no choice but to apologise then (Both Council and Trust), The PHSO completely evaded/dismissed answering my complaint. The CQC described themselves as a “business” and even sent a threatening letter.

There is total unaccountability and bullying under the NHS especially under this area LPFT.

The patient, carers/mothers, fathers, other family members are not protected. I am not alone to encounter a wall of silence, culture of bullying but firmly believe this needs to be exposed. This is a complete and utter waste of public money when so many agencies concerned do NOTHING in terms of protection to the public and vulnerable patients. There needs to be external safeguarding audits of multi-agencies with a view to protecting the public and vulnerable patients.

So where do you turn to when all avenues have been exhausted – I believe all safeguarding should be done externally, just as I think all capacity assessments should be done independently and NOT arranged by Trusts/Councils themselves. There needs to be more scrutiny with regard to capacity assessments to ensure Principle 4 is taken into account. There should be more scrutiny about the way social services conduct themselves under the ‘secret court’ of County Court where hearings can take place behind your back and you do not get a fair trial due to redacted copies, certain decisions reached in hearings that take place behind your back without proper regard to circumstances.

“My Idea by Elizabeth Bevis”

FRIDAY 10TH NOVEMBER 2023

“I want to eventually come home to live with my Mum through the COURT OF PROTECTION. This is a court who has helped us in the past when Enfield wanted to send her back to a care home in Northampton where she had no food at the weekend. I have nothing but respect for the Ct of Protection.

“I miss my Mum greatly and want to go home to her”

Here is Rachel’s Response which was witnessed by a family friend:

“Wish not allowed“.

The question is why are HCAs given the task of supervising 2-1 during visits writing notes all the time which most certainly will not be nice in content. It is BULLYING AND INTIMIDATION TO THE EXTREME AND THIS IS IMPOSED BY THE RESPONSIBLE CLINICIAN WHO HAS OVERALL CONTROL, DR W K but could also be extended to Executive Board who have ties with the CQC. You are made to feel like you stand alone, you are made to feel like nothing and outnumbered by many professionals of the MDT who all agree with the Responsible Clinician ie “Why do you think everyone …….………………….” You are made to feel guilty with accusations that you are responsible for the cause of the seizures for instance even in part or that you are unfit to be a mother and carer and disregarded like nothing. You are intimidated and bullied with threat of indefinite ban on not seeing your relative and Police have been used several times to intimidate however the Police in this area have been highly professional in their approach.

I am not expecting a call back from my daughter today because staff have been instructed NOT to allow calls. I wrote to my only avenue of communication ie email address: lpft.careconcerns@nhs.net. You have to request your visit through this email address in good time. So today (21.05) I requested my visit to see Elizabeth. Today I have written again to Care Concerns to see if my visit to Elizabeth can go ahead on Wednesday.

I was previously banned by Dr K for months on end with so many “banning letters” that I took out a Judicial Review myself, doing all the paperwork because I had a decision in writing of further ban and was told verbally I was banned indefinitely. I got nowhere with this even though I did the paperwork correctly and it went before the Judge. It was dismissed as being the wrong course of legal action. It was only then that LPFT slightly backed down and allowed 1 hour’s 2-1 supervised visits but I kept the case going as restrictions were still very much in place contrary to LPFT’s claims in their statement before the court. I had hoped I would get some justice in the High Court bearing in mind this is a human rights issue but sadly this case was dismissed. It is impossible to get a solicitor so I did it myself but many people miss out on such justice because they may not have the facility or may be ill and cannot find a solicitor to represent them. I decided not to challenge the Judge on this outcome but all along you get threatened with costs if you try to pursue justice.

When I visited Elizabeth last Wednesday I always take he some shopping. On this occasion I had to take my car in for repair it so I requested a later appointment and there was not time to do the usual shopping so I had to visit first, then shop afterwards and go back to the ward to drop the shopping in. I just wanted to check Elizabeth had received the shopping OK. When I took in Birthday cake twice it was thrown in the bin by staff and Elizabeth did not even know about the cake. This shows no-one cares.

When I visited last I was shocked at Elizabeth’s appearance.

She was covered in red marks all over her face. She had red raw knuckles where she had been hitting her hands on hard surfaces. When I asked her why she said she was distressed in there as it was “so noisy and unbearable”. None of the agencies involved or the MDT is doing anything about this situation and are disregarding Elizabeth’s wishes to come home and to see her cat. It has been practically three years of hell on earth under LPFT of a restrictive never-ending imprisonment where my daughter is declining in her physical health tremendously. My last visit was supervised 2-1 by a carers rep and HCA. None of them question whether what they are doing is right. They just go along with things and I suppose this is because otherwise they would be subject to extreme bullying like I have encountered.

With all staff sticking together as they are doing they probably feel very secure and protected – it is all of them against 1 (enhanced power), however this might not be the case in a court of law where individuals can be held responsible for their own actions. I have nothing but praise for the Ct of Protection I know not everyone feels this way but when I was previously bullied so badly in Enfield, Enfield CMHT deprived medication for 4 days putting life at risk to force return her back to a care home where she had no food at the weekend rated good by CQC. They were slated in court.

Anyway, that was back in 2014. In 2009 the diagnosis as a result of an MRI scan was not normal ie “Anterior Region Medial Temporol Compromise“. Now you will understand why the NHS religiously are being defensive, backing their psychiatrists in their claims of “mental disorder” who have stood in the way/obstructed/denied prior arranged appointments/referrals made to see a Neurologist arranged by Enfield and when we first moved to Lincolnshire these appointments were cancelled as “unnecessary” and they even tried to comment on their observations being not of a physical health nature but purely MH without proper pathological tests. Well I have evidence to the CONTRARY. It is therefore highly negligent of any doctors to stand in the way of proper pathological tests, especially when a patient is having regular seizures that are life threatening. A Tesla 3 scan alone is not enough. What they are doing is denying contact and trying to put blame on me as a mother for being responsible for the seizures and having a detrimental effect on Elizabeth who I hardly see now. Like a religious cult, LPFT is desperately protective/defensive towards ALL their professionals and guarded when it comes to anyone daring to challenge whether something is right or not and unfortunately the majority just go along with matters for the sake of convenience and for the sake of agreeing and solidarity by way of protection to their colleagues.

An example of this is a Neurologist who on the one hand agrees that Elizabeth should have proper tests that could only be done under a Neurological ward yet is quite happy to go along with filming of the seizures of a vulnerable patient against her wishes by a nurse instructed by the RC under LPFT and for them to comment on in order to justify their beliefs of a MENTAL DISORDER whilst preventing proper pathological tests by experts in Sheffield who have apparently been told not to disclose any information to me. This is highly negligent and gross breach of confidentiality/medical ethics but they are treating Elizabeth as though she has no capacity. They are also obstructing proper tests which need to be done in order that a fresh capacity assessment can properly be carried out to include Principle 4 and causative nexus.

The staff I spoke to in Sheffield were highly professional and highly sympathetic and even commented that is was very wrong to film a patient in distress who explicitly said “NO”.

I am up against several doctors right now. What chance do you have against “professionals” who stick together and agree with one another all acting against the wellbeing of my daughter when they have not properly read the files or looked at the past MRI scans or reports.

From the start, on moving to Lincolnshire I requested pathological tests to be carried out because of the Discharge Note stating “abnormal findings on a scan twice” and I was advised by the GP to take her back to London for the neurological appointments but this was refused by more than one psychiatrist under LPFT. It was as if they were afraid of any potential findings that might point to another diagnosis of a physical nature. The private scans I took Elizabeth for last year showed what looked like a cavernoma, lesions and inflammation but all that has been arranged is a Tesla 3 scan but that is not enough as there are other related extensive tests that need to be carried out in order to determine the correct diagnosis. In the meantime, my daughter is having fits that end always with an injection of benzodiazepam which is highly neglectful. All I ever wanted as a mother was for her to be treated fairly and when scans going back to 2009 revealed abnormality how can they just push this aside and deny my daughter the right to have proper pathological tests.

The above is why I am being treated like a criminal and denied meaningful contact with my daughter and also all calls are supervised and notes taken every visit and that alone is a breach of human rights. Filming a patient against her wishes backed by everyone is gross breach of medical ethics and against GMC Guidelines. Other family members are not treated the same way.

What I would like to see:

I would like my daughter to have her phone back that we her family pay a contract for (though now someone is trying to change the sim card). That would save us all the inconvenience of having to go through the office and holding on for a long time before you finally get through only to be told “I’ll see if she wants to speak to you” when you as a parent might have something important to say in terms of news. What would be better was for a member of staff to say “I will give her the phone to call you back in due course” or even “we are short staffed on the ward at the moment so I will give her the phone back to call you as and when the supervisors are available” – at least that would be an honest response.

A while back Elizabeth was missing meals and isolating in her room for most of the day because she could not stand the noise and chaos of the ward with alarms going off frequently. This has been ongoing but then staff will say “we cannot force her to eat” or “it is up to her” – where is the duty of care towards someone they say has no capacity? Who is spending a fortune of taxpayer’s money on such wrong facilities? When I have written to the ICB they are quick to distance themselves but I am sure they have played a major part in providing/spending a fortune of public money in the wrong direction when it would have been much cheaper to provide in the community. The Local Authority just want what is convenient ie keep someone locked up so they do not have to pay. They do this by making out you are an unsuitable, inadequate person incapable of providing care to your relative.

Practically every code of conduct has been breached, MHAS, MCA HRA Guidelines – everything by professionals acting “ultra vires” and these professionals are not only damaging my daughter’s health but impacting upon my health too and they have failed to carry out an Impact Assessment according to NHS Guidelines.

I have now contacted all the Neurologists and hospitals from former area where clearly scans were NOT NORMAL.

Now with high Prolactin levels of concern (mentioned by Elizabeth) and tremors, self-harming, seizures my daughter is going downhill both physically and mentally thanks to LPFT. Sadly this is not just one doctor alone but practically all of them and the only one who really seemed to care was Dr Memons of Cygnet Durham who bothered to ring me. He cared to tell me that Elizabeth was being taken to A&E after suffering a seizure for which I am now being blamed for. At the very least the doctors should be looking into the correct cause of the seizures and not standing in the way of full and thorough tests. I am only allowed to see Elizabeth once a week for just 1 hr heavily supervised whereas rest of family are unrestricted which is DISCRIMINATION. However now they appear to be standing in the way of phone calls, at least that is how it appears as well as stopping me from visiting by ignoring the emails that I am sending to request a visit. To not even get a response to three emails is concerning.

I would like a multi agency safeguarding review because I am questioning how can this section even be legally valid because the MHA should be the least restrictive care.

If anyone can advise on how to go about the above I would be most grateful.

STANDING IN THE WAY OF CONTACT, MAKING PHONE CONTACT DIFFICULT, TAKING THE PHONE AWAY, ISOLATING A VULNERABLE PATIENT AND IGNORING EMAILS UNDER LPFT

I have written three times now to the only address I am supposed to correspond to as per below. I have had no response whatsoever just a wall of silence.

From: susan bevis

Sent: 21 May 2024 16:12

To: CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) <lpft.careconcerns@nhs.net>

Subject: Visit to see E*** tomorrow (22.05.2024) between 6.00 pm and 8.00 pm

I have just phoned the ward and nothing has been put in their diary for me to visit my daughter.

Please confirm I can visit her in the evening tomorrow 22 May 2022.

I have also not been able to speak to my daughter over the phone.

Yours sincerely 

Susan bevis 

From: susan bevis

Sent: 21 May 2024 09:56

To: CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) <lpft.careconcerns@nhs.net>

Subject: Visit to see EB tomorrow (22.05.2024) between 6.00 pm and 8.00 pm

 Please can you confirm if the above visit has been booked in.

Please can you confirm what level of prolactin E has as I understand there is concern regarding elevated prolactin levels.

150-200 ng/ml

Prolactin level in prolactinoma is persistently elevated above the normal range1234. A prolactin level of over 150-200 ng/ml is almost always due to a prolactinoma, which is a type of tumor of the pituitary gland that secretes excess prolactin12. Prolactin levels can be much higher in some cases, up to 50,000 ng/ml2. A decrease in tumor size in response to drug treatment may confirm the diagnosis when prolactin levels are in an equivocal range4.

Please can you look into the Voting by Proxy form I left during my last visit to be signed and completed by the ward for the forthcoming local elections on behalf of E.

Look forward to hearing from you regarding the visit tomorrow evening.

Yours sincerely

Susan A Bevis

Mother, POA and Litigation Friend

From: susan bevis <susanb255

Sent: 20 May 2024 13:37

To: CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) <lpft.careconcerns@nhs.net>

Subject: E Bevis – request for visit Wednesday evening 22 May 2024

 Please can I book to see E on Wednesday evening between the evening visiting hours of 6.00 pm – 8.00 pm.  

Please comment as per below:

Regulation 9A: Visiting and accompanying in care homes, hospitals and hospices – Care Quality Commission (cqc.org.uk)

Regulation 9A: Visiting and accompanying in care homes, hospitals and hospices

Page last updated:    26 April 2024

Health and Social Care Act 2008 (Regulated Activities) Regulations 2014: Regulation 9A

This regulation aims to make sure:   people staying in a care home, hospital or hospice can receive visits from people they want to see

people living in a care home are not discouraged from taking visits outside the home

People attending appointments in a hospital or hospice, that do not require an overnight stay, can be accompanied by a family member, friend or advocate if they want someone with them

The regulation explains what providers must do to make sure they respect the right of each person to receive visits and to be accompanied, following an assessment of their needs and preferences.

Everyone should work on the assumption that in-person visiting and accompaniment to appointments are possible. Providers must put in place any measures or precautions necessary and proportionate to ensure that visiting and accompaniment can continue to happen safely. These must be the least restrictive options and must be decided with the person using the service, and their family, friends or advocates where appropriate.   If providers already have contractual arrangements that involve paying for additional staff to support care home residents to go out, this regulation does not change these arrangements.

Yours sincerely

Susan Bevis

Mother, POA and Litigation Friend

No response received to any of the emails I sent requesting to visit my daughter. Totally ignored as a parent/carer, no Care Act Assessment ever done, bullied left right and centre and treated like rubbish. Pushing aside my treatment there is a vulnerable person being abused in there and noone wishes to take any responsibility. None of the Agencies are properly investigating what is going on. I am chasing them up for response.

I also want a FULL ADULTS MULTI AGENCY SAFEGUARDING REVIEW as doctors are standing in the way of Elizabeth having pathological tests and I have gone out of my way to obtain past file records relating to MRI scans that WERE NOT NORMAL.

From: susan bevis
Sent: 22 May 2024 07:33
To: CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) lpft.careconcerns@nhs.net

Subject: Visit to See E this Evening between 6-8 pm (22.05.2024)?
Dear Ms Munro

This is the fourth time of writing but I am getting no response. Please advise if  the evening request can go ahead as I am in the area and I have given good notice and yet received no acknowledgement or even a response.

Also please can you explain why not one single call has been returned and the response from all members of staff is “I’ll see if she wants to speak to you”.   It would appear that contact is being obstructed when E needs to be informed as to the latest developments.  

Article 5 (3) deals with the rights of a person who are been detained.   Then there is 5 (4)  Storck v Germany (Application No. 610603/00  16 June 2005.     

It would appear that someone is trying to change E’s sim card for her mobile  which would therefore prevent contact for us all.  I know that E is not alone when making any phone calls and that staff are helping with the ordering of food for her and shopping.  LPFT have rated E as having no capacity and treating her as such with the rigid controls you have put in place.  I can only therefore conclude that a member of staff has tried to change E’s phone number by ordering a new sim card via Smartey especially since E has told us that staff assist her with everything.  We are most concerned that someone is trying to change E’s phone number completely by ordering a new sim card via Smartey when there is a contract attached to that phone.   Please can you explain this.  This would affect everyone in the family and whilst certain people on the ward might wish for me not to have any contact with my daughter so it would appear,  this is very disturbing that this new sim card through Smartey is being arranged by whoever is assisting.

Looking forward to hearing from you regarding today’s visit.    I am copying in everyone in this respect.

I have bought shopping for E which I would like to hand to her at the very least if you have once again banned me from seeing my daughter. 

Yours sincerely

Susan A Bevis
Mother, POA and Litigation Friend

I have been regularly visiting my daughter on Sundays recently at around 2.30 pm. This week due to my error in typing April instead of May in my email and only realising this too late to rectify, sadly I am not allowed to see my daughter this Bank Holiday weekend. It is bad enough having heavy restrictions in place infringing on human rights on telephone and visiting than to be deprived of seeing her altogther as her only regular visitor this weekend. I had promised to bring some things that she requested to the ward and will still make the journey to bring her the shopping I would normally do even though I will not be allowed to see her.

I have just tried to ring the ward. I did not argue that it was protected meal-time but you cannot just ring her mobile phone number as the phone is clearly not with her and has been taken away and the team then have to organise someone to sit in and listen to all phone calls and make notes when it is me who makes contact. Others in the family not treated quite as bad but still cannot get through. It is normally a Healthcare Assistant who is put in charge of the supervision and note taking and God knows what they are writing behind my back. I am sure it is not nice.

This kind of treatment has been going on for a long time now with all staff loyally sticking together regardless of their own Code of Conduct which portrays a culture of bullying and one of non-accountability. There is only one person in charge overall imposing these rules as only a Responsible Clinician can, namely Dr W K.

From: susan bevis
Sent: Thursday, May 2, 2024 2:01:30 PM
To: CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) lpft.careconcerns@nhs.net
Subject: Elizabeth BEVIS 12.02.1987 Visit to see Elizabeth
 

For the Attention of Ms A Munro

Is Sunday 5th April OK to visit Elizabeth?   Has there been any change in the restrictions on leave?

Please can you respond to the queries mentioned in my former email.

Yours sincerely

Susan A Bevis
Mother POA and Litigation Friend

No answer whatsoever to the above email from the Management.

So tonight I will ensure that I phone Elizabeth to let her know what is going on. I will reassure her that I will come all the way to Lincoln which is an hour there and back just for the purpose of dropping in a few bits of shopping as I would normally do and was doing throughout the many weeks I was banned completely from visiting.

It is sad the way patients under the MH in this area of Lincolnshire are treated but then again most are treated differently to Elizabeth who is being deprived of meaningful family contact and leave and this has been going on for quite some time by a Responsible Clinician who will not budge and says “I am concerned for my patient” Carers too can be subject to severe bullying also if they dare to complain and it is a waste of time complaining when they are all well-in with the CQC.

Elizabeth says she is autistic which they choose to ignore completely. They say they cannot assess her on a ward but how comes Huntercombe could? For all the criticism some of the private sector institutions get, the very worst experience I have ever encountered has to be the current and this is NHS not private. Even Huntercombe all diagnosed her with high functioning Aspergers but now all of this is in question with the MRI scan results done privately and the constant seizures that can be life threatening as well as frequent rapid tranquilisations with benzodiazepam which should never be given in respect of epileptic fits.

Elizabeth has definitely deteriorated under LPFT’s appalling treatment and her hands could not stop shaking when I visited last. I have been told there is no management on duty during the long weekend. The Manager of this ward is Kashmir Moon and not once have I ever spoken with her. I have only one point of contact now and that is the email address of care concerns and I have featured already what kind of response you get from them. Normally, it is either a wall of silence or else it is a heartless letter devoid of any compassion by a designated member of staff – mostly unsigned completely as no-one wishes to take the slightest bit of responsibility.

Here are extracts of an email I sent today to Care Concerns:

From: susan bevis
Sent: 03 May 2024 11:15
To: CARECONCERNS (LINCOLNSHIRE PARTNERSHIP NHS FOUNDATION TRUST) lpft.careconcerns@nhs.net

Subject: Paralegal’s Visit
 
For the Attention of Ms Ann Munro and LA Voiceability

 A paralegal came to see Elizabeth on 02.05.2024 accompanied by LA. Please explain.

The paralegal did all of the talking according to Elizabeth and it was all about her going into supported living.

Elizabeth was promised she could have her cat there in the supported living scheme but was not told where it is.

Please can you inform Nearest Relative C and S, other Attorney who need to know.

 Who arranged the paralegal?   How could Elizabeth have done this with her phone locked away still.

Elizabeth said very clearly she does not wish to go into supported living and that she wants to come home.

Elizabeth has made it very clear to all of us that she wishes to be close to her family not move out of area.

Elizabeth’s capacity is heavily disputed and as someone with capacity, Elizabeth’s wishes need to be heard.

Since LPFT rely on three “flawed” capacity assessments for displacement of me as NR a fresh capacity assessment is in need.

A fresh capacity assessment cannot be done unless the causative nexus is determined via Sheffield.

The cause of seizures is vital as Elizabeth’s life is at risk

What risk assessments are being done re supported living in regard to the seizures when full pathological tests not conducted

30th July has been arranged for MRI scan under Tesla 3 scanner.  Elizabeth needs to go for a few days to have proper EEG tests done.

If Elizabeth has epilepsy she should not be treated with prn benzos for rapid tranquilisation.

Prolonged and repeated use of benzodiaepines can increase the risk of rebound seizures or interictal epileptiform discharges (IEDs) in some individuals. Schizophrenia-like symptoms are observed in some patients and are associated with epileptiform discharges but not overt seizures. The good response to antiepileptic treatment could be interpreted in the context of a (para)epileptic pathomechanism.

“The EEG alterations might be due to a polygenetic effect due to different genes”.

This is why accurate diagnosis is so important. You will see in the case below that a patient with schizophrenia like symptoms had epilepsy and recovered when taken off antipsychotics and treated with anti-convulsants.

The idea that schizophrenia is ‘confirmed’ by daily observations conducted by unqualified staff is absurd. Care assistants cannot possibly know how to differentiate between IEDs and psychosis induced by other causes. This is why PANSS and associated physiological testing is crucial.  LPFT are in the dark ages when it comes to diagnosing and treating psychiatric patients. They neglect proper investigation of genetic markers in psychosis, they neglect EEG examination, they neglect genetic testing for treatment refractivity, they neglect investigation the potential inflammatory causes of brain disturbances and the ignore ADRs.

This indicates an ideological approach to diagnosing and treating psychosis rather than a medical one. Belief based medicine, not evidence based medicine.

Clozapine can actually induce epilepsy in some patients due to a genetic polymorphism. LPFT do not test for that either.

Schizophrenia Associated with Epileptiform Discharges without Seizures Successfully Treated with Levetiracetam

Dominique Endres1 Evgeniy Perlov1 Bernd Feige1 Dirk-Matthias Altenmüller2 Nils Venhoff3 Ludger Tebartz van Elst1*

1Section for Experimental Neuropsychiatry, Department of Psychiatry, Faculty of Medicine, University of Freiburg, Freiburg, Germany

2Freiburg Epilepsy Center, Department of Neurosurgery, Faculty of Medicine, University of Freiburg, Freiburg, Germany

3Department of Rheumatology and Clinical Immunology, Faculty of Medicine, University of Freiburg, Freiburg, Germany

Background: Schizophrenia-like disorders can be divided into endogenic or primary, idiopathic, polygenetic forms, and different secondary, organic subgroups [e.g., (para)epileptic, immunological, degenerative]. Epileptic and paraepileptic explanatory approaches have a long tradition due to the high rate of electroencephalography (EEG) alterations in patients with schizophrenia.

Case presentation: We present the case of a 23-year-old female patient suffering, since the age of 14 years, from a fluctuating paranoid hallucinatory syndrome with formal thought disorder, fear, delusions of persecution, auditory, visual, and tactile hallucinations, as well as negative and cognitive symptoms. Laboratory measurements showed increased titers of antinuclear antibodies (ANAs) in the context of ulcerative colitis. While there was no clear history or evidence of epileptic seizures, the EEG showed generalized 3 Hz polyspike wave complexes. Under treatment with levetiracetam, the symptoms disappeared and the patient was able to complete vocational training.

Conclusion: The schizophrenia-like symptoms associated with epileptiform discharges but not overt seizures and the good response to antiepileptic treatment could be interpreted in the context of a (para)epileptic pathomechanism. The EEG alterations might be due to a  polygenetic effect due to different genes. Mild immunological mechanisms in the framework of ulcerative colitis and increased ANA titers might have supported the network instability. This case report illustrates (1) the importance of EEG screenings in schizophrenia, (2) a potential pathogenetic role of epileptiform discharges in a subgroup of patients with schizophrenia-like symptoms, and (3) that antiepileptic medication with levetiracetam could be a successful treatment alternative in schizophrenia-like disorders with EEG alterations.

Background

Schizophrenia-like disorders are characterized by delusional perception and delusions of control, hallucinations (e.g., commenting or discussing voices), thought insertion or withdrawal, cognitive impairment, thought disorders, or social withdrawal.1 In addition to primary, endogenic or idiopathic, polygenetic forms, different secondary pathophysiological mechanisms [e.g., (para)epileptic, immunological, degenerative] can be assumed. Because of the high rates of electroencephalography (EEG) alterations, ranging from 7 to 60% in patients with schizophreniform syndromes, epileptic and paraepileptic explanatory approaches have a long tradition (1–3). In line with this assumption, we reported the first case of a young patient with a schizophrenia-like disorder, generalized spike-and-slow-wave complexes without epileptic seizures but with remission under treatment with valproate (4, 5). Immunological reasons might be due to autoantibody-associated autoimmune encephalitis, cerebral vasculitis, or collagenosis e.g., systemic lupus erythematosus (SLE). Immunological effects might lead to network instability and therefore cause (para)epileptic phenomena (7). The detection of a (para)epileptic or immunological mechanism opens new treatment perspectives, in that antiepileptics or immunomodulators may be helpful (4, 5, 7–10).

Case Presentation

Clinical Presentation

We present the case of a 23-year-old female office clerk suffering from fluctuating paranoid-hallucinatory symptoms since the age of 14 years (2007). Therefore, the diagnosis of paranoid schizophrenia was made by different psychiatrists. Although taking neuroleptics, in the course of the disease, the patient developed five episodes (for several weeks) with paranoid-hallucinatory exacerbation. In these episodes, the patient suffered from formal thought disorder, fear, delusions of persecution, auditory hallucinations with commenting, discussing, and commanding voices, visual hallucinations with seeing maggots in her room, and tactile hallucinations with the feeling of being touched from behind. In parallel to these exacerbations, the patient developed severe negative and cognitive symptoms including attention and memory deficits, fatigue, depressive mood, and sleep disturbances thus completing the psychopathological features of comprehensive schizophrenia. Neurological and medical examinations were normal.

Family History

There was a positive family history for unipolar depression, which was diagnosed earlier in two sisters, both parents, and both grandmothers. There was no history for schizophrenia-like psychopathology, bipolar disorder, or epilepsy.

Somatic and Developmental History

Symptoms started 6 weeks after pain of the large joints. Therefore, a rheumatological disease was discussed. During an external work-up of repeated diarrhea, a chronic inflammation gut disease (ulcerative colitis) was diagnosed in 2014 and treated with mesalazine. No birth complications or in utero abnormalities were remembered; the birth was performed by cesarean section. The early childhood development was normal. No febrile convulsions or inflammatory brain diseases were remembered. The patient suffered mild cerebral contusions at the age of 4 and 12 years.

Diagnostic Findings

The diagnostic findings are summarized in Table 1. Taken together, the immunological alterations were compatible with the previously known ulcerative colitis (11). The electrophysiological findings (Figure 1) would be compatible with primary (idiopathic) generalized epilepsy; however, the history for epileptic seizures including absences and myoclonic jerks was negative.

Table 1

On 08 February 2024 16:42 LPFT Mental Health Act Team sent an email regarding a question the NR (Elizabeth’s sister) put to them about Elizabeth’s PANSS score.

The PANSS score is a long established test approved by the Royal College of Psychiatrists and used by NHS Mental Health Teams in many of the trusts to determine the severity of the schizophrenia the patient is suffering from. Its purpose is to confirm diagnosis, to guide the treatment regimen and to determine suitability for matters such as section 17 leave, suitability of the patient for post-discharge accommodation and eventual discharge from mental health care.

This was the reply the NR received:

“LPFT does not use the PANSS scale for various reasons but does use the Glasgow Antipsychotic side effect scale (GASS). This measures the side effects of antipsychotics rather than the efficacy of antipsychotics”.

This is totally unsatisfactory for the following reasons. To begin with to quote their own words “for various reasons” gives no explanation at all why this scale is not used by LPFT and is a cursory and unhelpful excuse.

The PANSS scale as mentioned above is crucial in determining not only treatment but deprivation of liberty and the ability of Elizabeth to enjoy leave and to have quality time off the ward. Her stifling detention without hope of even the chance to have a day out or to spend time with her family on important occasions like Christmas and her birthday are a contribution to her state of mind and a detriment to her eventual recovery.

The scale is also used to determine an appropriate treatment regimen which goes beyond the simple use or rapid tranquillisation and isolation preferred by the staff of the hospital in which she is detained. The hospital has obstructed all attempts to have Elizabeth’s mental health condition based on a determination that their ‘diagnosis ‘ of schizophrenia would be the only option. Elizabeth is now seeing a neurologist but that has only happened because that intervention was sought by her mother and was indeed actively discouraged and obstructed by the Responsible Clinician and the Clinical Lead on the ward.

The Glasgow Antipsychotic Side effect (GASS) scale that they refer to in their email has an entirely different purpose to the PANSS scale and they are well aware of that. The GASS effect scale is for detecting adverse drug reactions and it has to be said if they are indeed using this they have ignored a number of these over the last two and a half years in spite of them being pointed out to them.

LPFT are fully aware that the GASS scale is not a substitute for PANSS but an entirely different test and the reply to the NR was disingenuous and unhelpful. To date no detailed explanation of why PANSS is not being used has been given and the Mental Health Act Team (notably the email does not identify its author) have failed to help once again.

In the absence of proper monitoring by the people entrusted with Elizabeth’s care is it hardly surprising that after two and a half years subjected to a deprivation of liberty regime more restrictive than a section 37/41 order and constant prn rapid tranquillisation that she has made no improvement and is as far away from discharge as she very has been.

The improvement and recovery of patients is higher with PANSS than with the informant based observation that LPFT use.

That, along with random selection of medication, failure to carry out tests and the ignoring of test results already established, failure to involve other healthcare professionals and even to obstruct Elizabeth from seeing them, oppressive deprivation of liberty including denial of her human rights and repeated use of rapid tranquillisation for their benefit and not hers has resulted in absolutely no improvement in 30 months of being held under the Mental Health Act in an acute admission setting.

LPFT have totally failed Elizabeth and tried to blame me for their failures. Dr K has even said I am contributive towards the seizures. Their admission that they don’t effectively observe patients but still continue oppressive deprivation of liberty just about sums up their failure.

Yours sincerely

Susan Bevis