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I previously wrote about my recent declined visit by the RC of Castle Ward that Elizabeth was too ill to see anyone the day after I spoke to her when she was clearly looking forward to my visit and asked me to bring her things.

I am pleased to inform everyone that Cygnet did eventually facilitate my visit. I drove to Sevenoaks and decided to stay over just in case there was sudden change in plan.

Only I was allowed in to see her as I was lucky and so fortunate to have some witnesses on hand.

I was taken to the visitor’s room and at first surrounded by staff and had to wear a face mask though not all staff wore facemasks and I was told I must wear it at all times.

I saw a psychiatrist and Responsible Clinician as there is always more than one involved but the overall responsibility for care lies solely with the Responsible Clinician who is in charge of everything.

Elizabeth was not allowed out and it was a lovely sunny day but when I explained I was staying a bit longer the RC granted three hours leave which was nice.

The visit to Elizabeth was not unpleasant. Staff were nice to me. I had come to check out Elizabeth’s phone as none of us could contact her and it turned out it was broken but Cygnet to be fair took liability and I took her out to the town buying her lunch and trying to get some more clothes as the clothes she was wearing were too small. She had ballooned in weight.

I wanted to take Elizabeth to see the deer in beautiful grounds nearby but just the lunch and trip into town took too much time and I thought I would then go on to visit the beautiful house and grounds of nearby Chartwell Winston Churchill’s former family home.

Chartwell – Wikipedia

https://en.wikipedia.org/wiki/Chartwell

I wanted to take Elizabeth back there the following week thinking she would be at Cygnet for up to 3 months.

With three hours leave a day I was happy as I had not seen Elizabeth for weeks on end. Also trouble getting through on the phone was upsetting but now I was there and able to sort out the phone which had been broken I felt happier.

There is so much to see and do in the surrounding beautiful area of Sevenoaks I now had something to look forward to and proposed to visit the following week with Elizabeth’s sister.

Meeting the team was good as communicating over the phone is not always the best thing but there was one person who stood out, that being Tom Higa who communicated well with me and took on board my comments and actually listened to what I had to say which is very rare.

The visit the following week did not take place because Elizabeth was brought back to Suffolk Ward once again very late at night. It is from Suffolk ward that Elizabeth has been transferred all over the place, most recently to St Pancreas Hospital Ruby Ward, Camden and then Cygnet Sevenoaks and Elizabeth being autistic but deprived of a formal assessment to have such changes in a short space of time is most traumatic for her.

I had hoped that Cygnet would do a proper assessment on Aspergers and take a look at her complex PTSD, already diagnosed in an expert witness report but dismissed by all at BEHMHTNHS except for their clinical psychologist Kajori Mukherjee. I doubt an assessment was carried out.

Back on Suffolk Ward I thought at least she would be nearer home but felt very uneasy because of past treatment my daughter has received on this ward under the Responsible Clinician still in charge and it seemed like instead of tackling her trauma they used punishment on the wards ie lengthy seclusions of nearly a week, following which transfer onto PICU settings, identified as being entirely unsuitable by the RC’s of the respective wards where she had been sent because when you look at environment, how can this be good for a trauma victim when noisy and volatile. Elizabeth was on 15 minutes watch and 1-1 which was very restrictive at Cygnet. Now back on Suffolk Ward she is held in seclusion.

The RC is still the same one who goes back years and who sticks firmly with her belief of “paranoid schizophrenia” and “emotional unstable personality disorder” – the latter I see as most stimatizing and unscientific, considering the extent of all the terrible abuse Elizabeth has suffered whilst under care in the community etc. Most accurately, yet dismissed, Elizabeth has a full report from Dr Bob Johnson, a very experienced Psychiatrist, who states she has “complex PTSD going back to 2010” to which we as a family all agree. This report has been ignored locally together with his recommendation of “intensive trauma therapy” which is why Elizabeth has deteriorated and not got better. No therapy of such description has ever been given to Elizabeth. As for Schizophrenia this is an unscientific umbrella diagnosis for other causes and in Elizabeth’s case the causes are physical as I have proven but thanks to advice from the wonderful Psychiatrist Dr Joanna Moncrieff, as I follow advice from doctors and Professors who are truthful and honest I took my daughter to see an Endocrinologist which proved my point. Another point to note is that I am not stating I know better than Doctors who come across as arrogant in many cases and treat you like you do not exist and there have been many abusive comments stated in the files behind my back so I am not trying to say I know better than these doctors but would comment that I have gone to the very top – to Professors and pharmacologists for advice on the medication to find out the true facts based on research. There are many doctors who take an easy and cheap option of drugging and of continuing to stick with a diagnosis they see fit, ignoring so many other doctor’s professional opinions for which I have reports and the treatment of prescribing therefore does not work when underlying physical health conditions are ignored for instance. Then when you read about the tragic case of Oliver McGowan it is dreadful to think that no lessons have been learned resulting in further deaths as I see Elizabeth’s case has similarities and see that her life is currently being put at risk because of the Palilperidone Depot Injections being prescribed on Suffolk Ward Chase Farm Hospital Enfield.

Right now, my daughter is being held in seclusion on this beautiful sunny day as a punishment by Doctors and the Doctor in charge goes way back to 2014 Ct of Protection case where professionals from her team allowed infiltration by the COMMUNITY MENTAL HEALTH TEAM PARK AVENUE so that could report nastily for court purposes behind my back but thanks to the COURT OF PROTECTION they saw through this despite me not having any representation in court. I will be forever grateful to this Court who treated us fairly as otherwise Elizabeth would have been forced back to Phoenix House Stepping Stones Northampton where she had no food at the weekend. Previously the current RC did not answer my request for leave for a holiday and money was wasted as I was told otherwise. The holiday was with Working to Recovery Summer Camp that would have benefitted Elizabeth. It is definitely punishment not care and this today has been confirmed in no uncertain terms in my conversation just now with a nurse called Ada. The conversation is typical of the way many professionals respond defensively and came across as patronising.

I phoned to find out if Elizabeth was still held in seclusion and it was kind of like -you know the answer to that rather than a straight yes or no. So on this wonderful sunny day my daughter is being punished by Doctors and others who are knowingly given depot injections of Paliperidone she is allergic to. Instead of acknowledging this fact Ada commented on “bad behaviour” by Elizabeth. These accusations are commonplace and biased as bad behaviour is only ever mentioned in terms of the patient or their families – never themselves. So if you misbehave or in other words suddenly become distressed and act out your emotions of fear, you are thrown into a seclusion ward at Chase Farm Hospital Suffolk Ward and kept there for days on end before being transfer an expensive PICU ward far away from home, instead of someone trying to communicate kindly with the traumatised patient IT IS PUNISHMENT NOT CARE and the professionals justify this by stating “if your daughter behaved herself ………” or words to that effect. I could hardly get a word in – I wanted to know if she was still locked away like a prisoner for the third time, deprived of contact with family, phone taken away so that Police cannot be called for instance. This is why they do it. It is worse than prison for someone so badly abused like my daughter under the “care” of BARNET ENFIELD AND HARINGEY MENTAL HEALTH TRUST who have yet to respond to my complaint and who have tried to label me as Vexatious Complainant to which I responded with everyone’s comments showing how everyone has tried to cover up substantial failings and let one person in particular take the blame ie the Director of MH when in actual fact my complaint was addressed to absolutely everyone. I feel like featuring that, their responses and all the safeguarding minutes as an example of how professionals all stick together and bully you when things go wrong and no-one raises their hands to take any kind of responsibility because they are all too busy protecting their jobs/salaries and in a doctors case their licence is more important. That says it all doesn’t it. It is not about care but protecting themselves and their own backs.

Yesterday I requested a copy of the Code of Conduct for Seclusion ie I was curious to know how long it is acceptable to keep someone locked away ie punished for their so called behaviour for which I’m still waiting to hear. Could not even get through to Pals so I phoned Tracy, PA of CEO Jinjer Kandola who then said she would contact Pals herself.

So in Barnet Enfield and Haringey MH Trust it would appear to be “Policy” that there is no length of time for seclusions or is there simply no policy or code of conduct. The first time in seclusion was several days before transfer to St Pancreas Hospital as they tried against my advice to put my terrified daughter on a mixed ward. After that seclusion again whilst I get a text message asking me to call the Police on behalf of her and other patients who had barricaded themselves in a room. That led to an injection of course and more punishment of seclusion for about 4 or 5 days – the excuse as always is that someone’s behaviour is bad and that it is justifiable to punish in this way depriving phone contact which affects all the family before transfer to another PICU costing circa £13000 pw and the Doctors there just like Huntercombe state wrong environment. So who is responsible for providing such care and the beds that go with it? Why isn’t decent care/facilities provided in Enfield? Why are the voluntary organisations deprived of cash to help people in the local area of Enfield when there is money to burn by sending someone like my daughter far away from home and family? Again it comes back to why isn’t there better facilities in the local area and perhaps Jinjer Kandola CEO can explain to everyone why???

So whilst on the phone to Ada I asked for the name of the Ward Manager – His is name is Gyada Antwi – I think I’ve met him yesterday as I became entrapped in the double doors asking to speak to the ward manager because I wanted a copy of their Code of Conduct and in particular on seclusion. I was then confronted by three men, I think he was amongst them telling me to leave the premises then barely audible, the threat of “IF YOU DONT LEAVE I’LL CALL SECURITY” – what kind of communication is that! All I wanted was the Code of Conduct – if there is any such thing under Barnet Enfield and Haringey MH Trust and I felt both intimidated and threatened – once again faced with zero communication skills – if this is I was communicated with then this is how the patients are treated – like a piece of rubbish.

Ada was telling me that another Doctor – Dr Varsha was due to see Elizabeth today. I really don’t need any explanation and excuses for decisions made when there is only ONE RESPONSIBLE CLINICIAN IN CHARGE who I have clashed with in asking for extended leave so I can take Elizabeth on a short break – the excuse was “what about the risks” – Absolutely no risks now they have drugged her up like a zombie to the point she has to hold onto my arm, she could not keep food down, she kept crying all the time. I AM SO BITTER TOWARDS BARNET ENFIELD AND HARINGEY MENTAL HEALTH TRUST WHO HAVE DESTROYED MY DAUGHTER’S LIFE AND MINE. There might be some kind people working within the Trust however the majority stick together like glue from what I can see defending one another including a Responsible Clinician they go along with for sake of their jobs but they all know from the notes that they could be killing my daughter which is why I want this all made public and transparent as I see similarities here to the case of Oliver McGowan ie Doctors who care more about their Licence than whether a patient has a bad reaction they put down to bad behaviour they can punish – they look at that person and patronisingly point the finger accusing that person of bad behaviour knowing full well they are causing that person to behave that way by THEIR TREATMENT and choosing to ignore other Doctor’s professional diagnoses but even drugs charts they themselves put a line through re allergy.

I always look further and question why someone might behave differently or show aggression or lash out in fear. This person needs to be in the right environment and not any NHS ACUTE MENTAL HEALTH OR PRIVATE SECTOR PICU WARD. When you look at the remarkable campaign on Twitter by Jeremy, Bethany’s Dad (she was fed through a hatch) unfortunately many others are treated in the most apalling manner and completely misunderstood by so called professionals who stick together and defend one another and will never admit blame – this is why it is so important to be transparent open and honest.

It is like calling someone a liar when a professional spins lies by trying to convince the patient that they have a certain diagnosis that this professional believes in and overrules other professional opinions. What needs to be done is in such instances in cases where there is massive dispute like in Elizabeth’s case are for external assessments to be undertaken and the one thing I would praise Huntercombe for is that they differed from the opinion of the local area.

If a diagnosis is wrong then so is the treatment and the vulnerable person suffers by punishment after punishment after punishment and becomes a revolving door case.

It is absolutely heartbreaking to hear my daughter talk since coming home and ending up the dreadful local area and now I fear for her life because of their treatment. I’m too upset to type her comments but when I sent her to stay with kind humane professionals in 2016 for the first time she came back well and even wanted a job.

It is also upsetting to read all the lies – it is stated “clozapine was helpful” when it caused injury and tachycardia and Mews Score 3.

It is upsetting to read that she was “forced” to go and stay on the Isle of Lewis with the wonderful professionals Working to Recovery- these comments remain in the care plan along with the most disturbing comments of “alleged sexual abuse to a child” WHERE IS THE EXPLANATION TO THIS I AM FED UP WITH WAITING BEHMHTNHS. IVE DONE A PUBLIC DECLARATION REQUEST AND I WANT TO HEAR YOUR RESPONSE RIGHT HERE ON TWITTER AFTER ALL THE ABUSE MY DAUGHTER HAS RECEIVED. So many harmful lies to discredit both vulnerable person and their families and I am only too happy to reveal this dishonesty and pack of lies right here for everyone to see as I am not alone.

I highlight below the very sad case of Oliver McGowan. RIP Oliver. It makes me sad as no lessons will ever be learned unless Doctors are made more accountable.

My daughter Elizabeth is currently being forcibly drugged under Barnet Enfield and Haringey MH Trust Suffolk Ward right now on drugs previously found to be allergic to/contraindicated to her underlying physical health conditions – pinned down by up to six members of staff and injected with poisonous chemicals they know full well previously found to be allergic to.

I am hoping that Oliver’s family will at long last get the justice they deserve with a criminal investigation underway. I have decided to notify Police of my concerns right now and would urge other parents to do likewise. When a Doctor ignores everything (even putting a line through the drugs chart acknowledging previous allergy) in other cases where physical health conditions are ignored then these doctors should be made accountable after all, Drs should do no harm. Other members of staff who knowingly administer medication when drawn to attention the facts of contraindications and allergy where diagnosis is in enormous doubt should likewise be held accountable when things go wrong. It is not a matter of “please take your medication as my licence is at stake“. When Drs knowingly prescribe such enormous quantities of drugs above BNF level then there needs to be accountability as they put lives at risk. More people should be challenging this important issue.

In Elizabeth’s case she was found to be a poor/non metaboliser through the unique p450 liver enzyme tests I had done. I have to say some Doctors have respected this but NOT UNDER BEHMHTNHS. There are some areas like Enfield where anything goes and physical health conditions needing referral to Endocrinology, Neurology is ignored in favour of a MH label which some Doctors choose to stick by, ignoring and disregarding other doctor’s professional opinions. This is how death and injury can occur.

I highlight the shocking sad case of Oliver McGowan as an example of this below:

https://www.bbc.co.uk/news/uk-england-bristol-53255043

https://www.independent.co.uk/news/health/oliver-mcgowan-death-autistic-anti-psychotic-medication-nhs-training-a9184686.html

https://www.bristolpost.co.uk/news/bristol-news/police-investigate-death-oliver-mcgowan-4281745

https://www.bristolpost.co.uk/news/bristol-news/southmead-hospital-doctor-who-gave-1473915

https://www.england.nhs.uk/2019/08/nhs-announces-top-clinician-and-independent-expert-to-oversee-review-death-of-oliver-mcgowan/

https://www.bristolpost.co.uk/news/bristol-news/family-oliver-mcgowan-cover-up-2338438

I cannot wait until the mandatory training is in place https://www.skillsforcare.org.uk/Documents/Topics/Learning-disability/Mandatory-training/ITT-open-Feb-2020.pdf

As a parent, I have become accustomed to being bullied, ignored, deprived of contact, excluded and ridiculed and the most nasty defamatory comments are written behind your back when the team in desperation stick together to try and cover things up when on numerous occasions things have gone wrong under care. A patient is humiliated, gaslighted and coerced and in the end the truth is revealed. This is care under the NHS and I am featuring my local area of Enfield. It is enough to put you off seeing a Dr for life when you look at the overprescribing done under Enfield MH in the past causing Akathisia. Care under the NHS in my local area has no boundaries in terms of spending and under the MH the CCGs waste enormous public funds by not providing the right kind of care leaving a patient more traumatised than ever before. How many times has she been sent to a PICU ward because the care/environment on Suffolk Ward is totally inadequate and there is no support in the community because so much money is wasted by the community MH team on legal action trying to get rid of the nearest relative. Under a PICU she was held most recently on Cygnet Godden Green Sevenoaks – this along with St Pancreas Hospital, Ruby Ward Camden, Huntercombe Roehampton had been used simply for rapid tranquilisation, not care by Barnet Enfield and Haringey MH Trust but at least Huntercombe diagnosed her as having High Spectrum Aspergers which the current RC chose to ignore.

Today I received phone calls from my daughter looking forward to seeing me and coming off the ward as the only way patients can come off the ward now is being escorted by staff but this was not allowed today. Firstly I was told by Elizabeth there was an exercise class on the ward but apparently noone came and knocked on her door to remind her of the time so she did not attend – that is if the class even took place. Then there was some kind of buffet meal provided by the GMC apparently which Elizabeth would have found quite overwhelming being autistic, especially if there were lots of patients in the same room. So I turned up at Chase Farm Hospital and this was the first I heard she was once again placed in seclusion. I am sick and tired of Barnet Enfield and Haringey Doctors putting blame on a patient’s behaviour when they are knowingly and unaccountably drugging that patient on medication previously found to be allergic to and contraindicated to their physical health. It is never ever blame on their part. It is always blame on the patient and their family but let’s face it, Elizabeth instead of getting better under their care has got worse and worse and sent from pillar to post all the way to Wales (Cambian), Bethlem where she had a mews score 3 critical and was prescribed 2 x bnf levels of drugs plus developed tachycardia. She was sent to Huntercombe Roehampton, to a care home in Northampton where she had no food at the weekend, then to St Pancreas Ward and most recently Cygnet Godden Green, the third of Cygnet placements. This Trust (Barnet Enfield & Haringey MH Trust) clearly has money to burn and yet provides nothing decent in the community.

I have just written to the Rt Hon Feryl Clark MP for her help in this matter as we as a family were having difficulty in getting through on the phone to my daughter who was recently sent a long distance away. This is her response:

“Dear Susan, 

We are writing in response to the voicemail message you left asking for an update on your case. 

We note you refer to the complaint you have raise against health services and understand, from our correspondence with Barnet, Enfield and Haringey Mental Health Trust (BEH MHT) that your complaint is still being investigated. Please be advised that we have not raised a separate complaint. 

With regards to the enquiries we have raised, we received a response from Enfield Council but are yet to receive a response form BEH MHT. We will contact you once we have received both responses as this will enable us to provide you with an update which encompasses the wider picture. 

In the enquiries we have raised, have asked the relevant bodies for reassurance that they are aware of Elizabeth’s situation and are working to provide her with both the social and medical care and support she urgently requires. So where is such care under this brutal area – it is punishment not care when the treatment and facilities for care are totally wrong and inadequate. It is an area where they have money to burn on private sector PICUs instead of improving the quality of care on the acute MH wards where a patient’s physical health is overlooked because a doctor who is in charges chooses to ignore and overlook and carry on prescribing drugs previously found to be allergic to.

As we have advised you previously, sadly we are not in a position to comment on medical diagnoses therefore we are sorry that we are unable to assist you with this aspect of your concerns and wish you the best in your pursuit.  Then you need to address this important issue in Parliament because young vulnerable people like my daughter are dying as a result of care and treatment provided under MH where certain Doctors choose to totally ignore a patient’s physical health and wellbeing knowing full well that a drug found to be previously allergic to is prescribed and parent’s advice are ignored. I am not even a Dr to state that what is going on is wrong and I WANT THIS MATTER ADDRESSED IN PARLIAMENT BECAUSE IT AFFECTS LOTS OF OTHER PEOPLE.

To date, we have received a high volume of information from you and appreciate you sharing your concerns with us however, we would greatly appreciate if you could, in a clear and concise email, set out exactly what you would like us to do to assist Elizabeth whilst considering the representations we have made thus far and our stance on some of your concerns. We hope you will understand and agree that due to the complex nature of this case, we require this email as a steer moving forward.   I want everything addressed in Parliament as here is a good example of the most abusive care in the UK – drugging a patient – with drugs prev allergic to and contraindicated putting their life at risk and blaming their behaviour on wrongly treatment. and neglect when the diagnosis is completely and utterly wrong and other Doctors say so not me. The amount of money wasted by providing the wrong kind of care in PICUS far and wide should be made accountable to the general public as it is after all public money when I spent a fraction of this money on decent humane care only to left without a scrap of support in Enfield on my daughter’s return. The other area is tribunals and bullying the Nearest Relatives when paperwork is drawn up unlawfully time and time again by unaccountable professionals who go out of their way to avoid blame and try to put blame on the parents/families and patients instead of apologising.

THERE IS NOTHING COMPLEX IN THIS CASE. IT IS A CASE THAT SHOULD BE LOOKED UPON AS TOPICAL RIGHT NOW AND THAT LESSONS NEED TO BE LEARNED WHEN VULNERABLE PATIENTS DIE AS A RESULT OF DRs PRESCRIBING DRUGS KNOWN TO BE CONTRA INDICATED AND ALLERGY RELATED AND THERE NEEDS TO BE ACCOUNTABILITY AND THIS SHOULD BE ADDRESSED IN PARLIAMENT AND ALSO THE MANDATORY TRAINING MENTIONED IN THE LINK ABOVE IS PUT IN PLACE.

MY DAUGHTER WANTS AN AUTISM/ASPERGERS ASSESSMENT AND THE CURRENT RC IS IN DISPUTE WITH MANY OTHER DOCTORS AND THEREFORE NOT PROVIDING THE RIGHT KIND OF CARE AND TREATMENT AND SENDING ELIZABETH ALL OVER THE PLACE WHICH IS MORE TRAUMATIC FOR SOMEONE WHO HAS A DIAGNOSIS BY SO MANY OF COMPLEX PTSD AND ASPERGERS/ DEVELOPMENTAL DIAGNOSIS.

The sad case of Oliver McGowan should be noted and lessons learned but that is not being done in Enfield under Chase Farm Hospital. My daughter is once again in seclusion on Suffolk Ward. She was not allowed out with me today. A proposed short break has not been agreed by the current RC. Elizabeth who I saw yesterday could not stop crying. Elizabeth could not swallow her food without being ill. Elizabeth was walking like she did when they forced Clozapine on her and now on Suffolk Ward once again yet more brutal treatment is being dished out and you as an MP should address this treatment. I want everything made public on Twitter as this is affecting many people in other areas too and I want everyone to learn from ENFIELD BARNET AND HARINGEY MH TRUST and the COMMUNITY TEAM I have featured in my story “Get Her Back We Are Paying for that”.

I note that you feature comments supporting George Floyd well I too support those comments but I wish to further draw to your attention the fact that vulnerable people of all ethnic backgrounds who suffer from MH and LD/autism are being dreadfully abused by their treatment much of which goes on under the NHS acute MH wards themselves and then someone within the Trust spends £13000 pw on private ATUs – this is enormous money to spend on a totally wrong environment and I would like an explanation as to why this money is not being spent on care in the community to prevent people like my daughter being incarcerated in such dreadful places as acute wards where behind closed doors terrible treatment goes on. I would also appreciate your assistance for my daughter to be properly and independently assessed because there is huge conflict on the diagnosis the hospital RC sticks to against so many other Doctors opinions.

We look forward to your response.  AND I LOOK FORWARD TO YOUR RESPONSE RIGHT HERE ON TWITTER SO THAT I CAN FEATURE THIS IN MY NEXT BLOG. IF NOT THEN I WOULD LIKE TO HAVE A MEETING WITH THE RT HON FERYAL CLARK

Yours sincerely, 
On behalf of the Office of Feryal Clark
Member of Parliament for Enfield North 

Westminster Office
House of Commons
London
SW1A 0AA

Tel: 0207 219 6607

Website: https://www.feryalclark.co.uk/

Last of all I asked for a copy of the Code of Practice when it came to length of seclusions under Barnet Enfield and Haringey MH Trust – I am most interested to hear how long a vulnerable patient is held and abused in this way as Elizabeth was held for than just a few days and deprived of fresh air and exercise.

—— Original Message ———- From: Nnennaya Aitalegbe DEPUTY WARD MANAGER<NnennayaAitalegbe@cygnethealth.co.uk>
To: Susan Bevis <
Date: 04 July 2020 at 14:26
Subject: RE: Visit – Tuesday 7 June 2020

Good evening Mrs Bevis

Thank you for your email.

Following our conversation, I have spoken with the responsible clinician she has confirmed that attending ward round at this present moment will not be ideal  as LB is currently very unwell. ******** currently reports that everything seems too much for her and she is worried about your  proposed visit. She is being supported on the ward and encouraged to remain focused.

Best wishes

Nena

I spoke to my daughter yesterday who sounded a bit happier on the phone yesterday. Not once has she phoned on HER phone. She told me she had made a couple of friends but they were all starving and could I bring some food with me so she could share with her friends. I asked if she wanted me to visit and she said “yes” – I asked her more than once and I mentioned that I had requested to come to the ward round and asked whether Nnenna had spoken to her about it and she said “no”. The letter above is in stark contrast to what I was told. Nnennaya Aitalegbe is the Deputy Ward Manager of Cygnet Godden Green Sevenoaks who is saying that Elizabeth does not want me to visit and THAT IS NOT TRUE AND I HAVE WITNESSES.

I told Nena that I would be coming anyway as I had promised to as I had agreed to bring her food. Never before has a Cygnet Hospital treated me this way or my daughter and this needs looking at. There seems to be different rules here at Cygnet Godden Green, Sevenoaks to other Cygnet hospitals. I am most concerned by the way Nnennaya is trying to deprive access to seeing my daughter just like Cambian did with RC Allyson Witts stating she was not well enough to come for Xmas yet she was brought down flanked by two nurses who were ordered to stay all the time with her.

I telephoned Cygnet Godden Green yesterday and spoke to Deputy Ward Manager Nnenna Yaaitalegbe and I am waiting to hear as to whether my visit will be agreed next Tuesday for ward round. She said she would have to ask Elizabeth and arrange with Dr Ruvini Senesinghe, the RC (Responsible Clinician). As yet I have not heard anything.

Elizabeth has been at Cygnet Godden Green 2 weeks now. Dr Ruvini Senesinghe said it would be Ok to visit and to contact the Ward Manager to facilitate. Normally Cygnet would have a visitor’s room so I enquired whether this could be booked as it is a long way to travel. When I asked whether an advocate could be present Nnennay commented that Elizabeth already had an advocate but I explained that the advocate was for me as Elizabeth’s sister could not come as planned. I am waiting to hear back from Nnenna. Mencap know of Elizabeth’s situation and were very helpful. They put me in touch with an organisation called access charity.

Access Charity

https://www.accesscharity.org.uk

The above organisation deals with:

Access to justice and enforcing the right to social care. We have set up a Legal Network to ensure that people get the social care that they have a right to so that they can live fulfilled lives in the community.

It has been social care that has failed. “there is no structure in the community” said Elizabeth, her days filled aimlessly with going out shopping alone, nothing to do, no mentor, no support worker, which I know in some areas is provided. Elizabeth has never had help in the community despite living alone in a flat so I had to help her clean the flat, cook healthy meals and not been able to shield as the Government recommended.

Yesterday was distressing hearing Elizabeth say she felt like she was going to die after the forced Paliperidone injection. She described 6 members of staff pinning her up against a wall and said for the next two days she felt so ill that she couldn’t move from her bed.

This injection should be given once a month only at the now lowered dosage of 100mg from 150mg previously prescribed by Suffolk Ward. However I am concerned that this has been given more frequently by Castle Ward as it sounds as though from what Elizabeth has told me this been given twice already and she has only been there 2 weeks. This is why I would like to go to the Ward Round. I have heard from leading experts that the administering of this particular drug is extremely specialised requiring a great deal of caution. I was led to believe the dosage had been lowered but from what Elizabeth told me it sounds like the injection is being given more frequently in which case it is in fact being increased.

I am in touch with those who have expert knowledge on drugs and I have welcomed opportunity for Elizabeth to be included most recently in the research by Professor Philip McGuire on CBD. However I was told by Dr Ruvini Senesinghe this would not be possible as not recommended by NICE. The only option was to put her back on a drug previously found to be allergic to because NICE have not examined the success of Professor Philip McGuire’s research. On section 3 there is nothing you can do to challenge treatment – of great concern is NICE do not seem to take enough into account harm done by their recommendation of such drugs known to cause harm, going through lawsuits in the US, some here in the UK. Doctors ignore their NICE guidelines and ignore manufacturer’s instructions/contraindications.

I was initially excluded from Elizabeth’s recent tribunal by video link from St Pancreas Hospital Ruby Ward on the grounds I disagreed with treatment. The team tried to use the usual excuse that Elizabeth did not consent. However Elizabeth had in fact given consent and I then had to be included at short notice. At the Tribunal I was asked was “are you a professional who has knowledge of the drug treatment” to which I replied “no” I am a mother but have sought expert opinion backed by research from more than one expert on the drugs in order to conclude Elizabeth’s treatment was wrong. It is not as though I as a mother know better than the doctors but had sought scientific research and gained knowledge from this via experts. Drug treatment is an area CQC should be concentrating on most of all (yet say their inspectors have no knowledge on drugs) as wrong prescribing can cause injury and death and here is an example of such:

PRESCRIBING AT CYGNET

Below medication prescribed by a different branch of Cygnet to just 1 patient.

Regular Medication: Sertraline 200mg mane; Depakote 750mg BD; Mebeverine MR 200MG BD; Metformine 1G bd; Atorvastatin 40mg OD; Omeprazole 20mg mane;  Furosemide 50mg mane; Dapaglifozin 10mg mane; Diazepam 5mg TDS; Colecalciferol T OM; Kwells 300mg TDS; Clozapine 225mg BD .

PRM Medication: Ibrufen 200-400mg up to QDs; Epipen 0.3mg up to 0.9mg; Cyclizine tab 50mg up to 150mg;  Procyclidine 5mg PO max in 24 hrs 10 mg; Olanzapine 2.5-5mg max 200mg (PRN + regular); Promethazine 25-50mg max dose 100mg in 24 hrs;  Salbutamol 100mcg; Glucogel/Glucsgon T; Corsodyl ; Lactulose;  Stat dose of Clopizol Acuphase given on 3 occasions since admission – forcibly injected.

Surely on this level of drugs someone could suffer enormous injury and this could lead to death?

CQC I do not agree! If I as a mother can take time and trouble to contact pharmacologists/experts on the drugs then so can the CQC and that is exactly what I would do if I was an inspector with the CQC – if there was anything I did not know then I would find out about it by experts.

It is apalling Tribunals and courts take the same attituded “we are not experts on prescribing”, trust the doctors and brush aside scientific evidence backing prescribing at huge levels as above. The MHA criteria is “risk to self and others” – this should take into account the risks to the patient from faulty prescribing. I as a mother have accumulated vast scientific evidence on prescribing and if it was up to me I would have patients tested to see if they could metabolise the drugs first as Elizabeth has had the P450 liver enzyme test done which stated “poor/non metaboliser”, I had to appoint a private GP to analyse the test results carried out by world’s leading experts Erasmus in Rotterdam. This is disgraceful as the tests should be available to everyone on the NHS in all GP surgeries because in the long term, these tests could save money by less prescribing, resulting in less injury inflicted upon patients who suffer adverse reactions which are not symptoms of so called “illness”.

” It is utterly appalling that her life is being taken away and that at only 33 she has lost all the aspirations she should have enjoyed.

Yes, very true, Elizabeth once wanted to be a chef. She went to college, had a job, was learning to drive and wanted to travel. Her life and mine have been ruined by the NHS. She once looked like a model but is now a size 20. Doctors under NHS have worsened her condition by reckless concomitant prescribing at max levels experimenting whilst ignoring underlying physical health concerns. They all back one another and involve other doctors to support them when they do not want it to look like they are directly involved. So they send someone away from the local area and pay huge sums of public money in order to get backing. Elizabeth has been sent all over the country far and wide “we are guided by the local Trust” said the RC of Ruby Ward St Pancreas – they are instructed, and stick together on opinion.

 To: susanb25
Date: 22 May 2020 at 13:03
Subject: Re: Xeplion (Palperidone)

Potassium levels below 3,0 mmol/l cause significant Q-T interval prolongation with subsequent risk of torsade des pointes, ventricular fibrillation and sudden cardiac death

YES, ELIZABETH’S POTASSIUM LEVELS ARE LOW AND I HAVE EXTENSIVE TESTS DONE TO PROVE THIS.


To: susanb25
Date: 22 May 2020 at 12:47
Subject: Re: Xeplion (Palperidone)

Who should not take Paliperidone Palmitate Syringe?

The following conditions are contraindicated with this drug. Check with your physician if you have any of the following:

Conditions:


  • Who should not take Paliperidone Palmitate Syringe? The following conditions are contraindicated with this drug. Check with your physician if you have any of the following:Conditions:
    • breast cancer
    • diabetes
    • a high prolactin level
    • excessive fat in the blood
    • low amount of magnesium in the blood
    • dehydration
    • low amount of potassium in the blood
    • overweight
    • very low levels of granulocytes
    • a type of white blood cell
    • low levels of white blood cells
    • low levels of a type of white blood cell called neutrophils
    • confusion
    • suicidal thoughts
    • a type of movement disorder called parkinsonism
    • tardive dyskinesia
    • a disorder characterized by involuntary movements of the face
    • mouth and tongue
    • neuroleptic malignant syndrome
    • a reaction characterized by fever
    • muscle rigidity and confusion
    • a low seizure threshold
    • a heart attack
    • angina
    • a type of chest pain
    • torsades de pointes
    • a type of abnormal heart rhythm
    • chronic heart failure
    • abnormal EKG with QT changes from birth
    • a disorder of the blood vessels of the brain
    • orthostatic hypotension
    • a form of low blood pressure
    • compression of the esophagus
    • priapism
    • a prolonged erection of the penis
    • seizures
    • weight gain
    • susceptible to breathing fluid into lungs
    • pregnancy
    • decreased blood volume
    • problems with food passing through the esophagus
    • metabolic syndrome x
    • dementia in an elderly person
    • diffuse Lewy body disease
    • cataract surgery
    • floppy iris during eye surgery
    • abnormal muscle movements
    • chronic kidney disease stage 2 (mild)
    • chronic kidney disease stage 3A (moderate)
    • chronic kidney disease stage 3B (moderate)
    • chronic kidney disease stage 4 (severe)Allergies:
    • Risperidone Analogues


      https://www.netdoctor.co.uk/medicines/brain-nervous-system/a8793/xeplion-paliperidone/
    • “As for lesions in white matter there is evidence of this causing psychosis but this is normally in older adults or those that have suffered cerebral infarctions.  The Journal of Neuropsychiatry and Neuroscience does advise clinicians to scan for frontal lobe lesions in patients presenting with psychosis and the endocrinology journals advise examination of the thyroid and parathyroid, since lesions in the parathyroid can also cause psychotic symptoms.  Late onset psychosis is often associated with this type of injury.

Elizabeth had a cyst – how can this suddenly disappear? Also I appointed a private Endocrinologist who did extensive tests which revealed underlying physical health conditions that should have been monitored but HAVE NOT BEEN under the NHS – conditions such as thyroid/PCOS – she is also insulin resistant and this is why I cannot agree with the diagnosis. I know there is something that is physically wrong and I am not even a Doctor. Doctors stated throughout the files “lets rule out anything organic” – so what is happening in my opinion is that Doctors look for a quick and cheap solution and when a patient such as Elizabeth complains they do not feel well then this is simply ignored – they just carry on prescribing knowing full well that what they are doing is harming someone’s physical health and wellbeing and a Doctor should do NO HARM.

As for the ‘diagnosis’. The definition psychosis is not in itself a medical diagnosis but refers to presentation of behaviour the patient.  This can be delusions, hallucinations and agitated or violent outbursts unconnected with immediate environment.

 If Elizabeth presents with any of this kind of behaviour it will be described as psychosis.  It is for the purposes of immediate medical intervention irrelevant what the underlying cause might be.  The first intervention has to be directed at attenuating the behaviour and then it is possible to look for potential causes.

There is bias re the first paragraph above as the team who made home visits prior to the CoP case tried to make out home environment was wrong by nasty reporting – in actual fact it has been questioned at one tribunal as to why Elizabeth remained problem free whilst at home. Whilst I reduced the Clozapine that gave her heart problems and NMS she revealed the full truth about the abuse she had suffered under care which showed the diagnosis to be completely wrong. I only sought private help at enormous cost in Kent when Elizabeth developed a nasty cough – this was an anticholinergic reaction so I was told. My search for private help revealed there was no facility in the UK who could help someone who had suffered injured and come off prescribed drugs which was so wrong as I had proved Elizabeth’s condition to be trauma and not schizophrenia – in fact she spoke clearly and said “eleven years of my life ruined – eleven years on these drugs” . Facilities need to be provided in the UK to help with drug withdrawals and assessments particularly when the diagnosis has been proven to be wrong as in Elizabeth’s case.

  • As I have explained before section 3 MHA1983 is a legal mechanism for treating patients without their consent, informed or otherwise.  There is no necessity to obtain a patient’s consent on section 3, the criteria for treating without consent are simply to save life, to prevent a serious deterioration, to alleviate serious suffering and to prevent the patient from behaving violently or being a danger to self or others (as long as the treatment represents the minimum interference necessary).

The above wrong. Why are people under the MH treated like second-hand citizens? This is not saving life – lives are being ruined. Who can honestly say no harm is being done when you look at what doctors are prescribing as per example above that can lead to death. To alleviate serious suffering is wrong too – this has increased suffering to Elizabeth and I have proven that with the right care in the right environment Elizabeth could get well at a fraction of the cost. I would rather Elizabeth be sent far away to get the right treatment in the right environment which is not a PICU/acute ward. Also it is not recommended hypnotherapy under NICE Guidelines but when I sent Elizabeth to Susan Hepburn of Harley Street this worked brilliantly. I now know why the team tried everything to persuade Elizabeth not to go and that was because this could have revealed everything she suffered under a certain scheme in the community whereas my intention was to speed up the process of provision under the Person Centred Approach which had been going on 6 months and provided nothing for her to do in the community as her days consisted of aimless shopping – chores expected to be undertaken in her home – a studio flat within a MH scheme. On 800mg Quetiapine “how can anyone function on this level of drugs in the community?” This led to Akathisia and on Clozapine, Neuroleptic Malignant Syndrome. In other words more harm than good.


To:susanb25
Date: 12 June 2020 at 20:47

The informed consent legislation does not apply to psychiatric medications administered under s3 MHA 1983.  It only refers to non-related physical treatments so even Metformin can be given on the grounds it is related to the psychosis. ”

Well this needs to be changed! a

Xv Finland 34806/04 [2012] ECHR 1371, [2012] MHLO 128 …

www.mentalhealthlaw.co.uk › X_v_Finland_34806 › 04_(2012)_ECHR_1371,_(20…

Mental Health and Mental Capacity Law Blog, ‘X v Finland – Are we in trouble?’ (18/7/12). This article argues that ‘[i]t is at best highly doubtful that the approach in the Mental Health Act 1983, where compulsory treatment flows from detention automatically and with limited distinct procedural and substantive safeguards, is consistent with Article 8 of the ECHR’.

The above highlights total inequality between mental health/physical health and wellbeing and that treatment given is the cheapest option under mental health keeping someone drugged for life regardless of physical health is for convenience with diagnoses given on observation of so called “symptoms” rather than question of underlying causes.

This is completely wrong and to place people like Elizabeth on a PICU ward is wrong too “I will never get well in this place – I may be coming out in a body bag” Elizabeth’s most recent words at her distress of being on yet another PICU where she is on 1-1 and cannot even make a phone call without staff listening to every word. She is followed around everywhere. This is the most restrictive care ever that Elizabeth has had but could be ordered by the local area (Enfield) for all I know who are paying vast sums of money for a stay up to 3 months. Whatever happened with “least Restrictive Care” – I attended their conference at Royal College of GPs.

When are Doctors going to take note of:

Coincidentally Risperidone is also associated with raised serum aminotransferases which in effect has the same consequences as alcohol induced fatty liver.  
 

On the last point talking therapies and hypnotherapy do have some degree of success but they take years and enormous discipline on the part of the patient. ” 

Not necessarily many would opt for this rather than drug treatment for life. Choices are not given and there is inequality under MH as compared with physical health care.


Date: 16 May 2020 at 10:11
Subject: Brain damage caused by PTSD

  • Using data from the Swedish National Patient Register and other nationwide health registers, investigators in this population-matched and sibling cohort study identified individuals first diagnosed with stress-related disorders between January 1, 1987, and December 31, 2008.
  • Exclusion criteria were history of neurodegenerative diseases, conflicting or missing data, lack of data on family links, or age 40 years or younger at study end. 
  • A matched cohort design allowed comparison of 61,748 individuals with stress-related disorders (PTSD, acute stress reaction, adjustment disorder, and other stress reactions) with the general population (595,335 matched unexposed individuals).
  • A sibling cohort allowed comparison of 44,839 individuals with stress-related disorders with their 78,482 unaffected full siblings. 
  • Follow-up began at the later of age 40 years or 5 years after the diagnosis of stress-related disorders, and concluded at the first diagnosis of a neurodegenerative disease, death, emigration, or the end of follow-up (December 31, 2013), whichever came first. 
  • The National Patient Register allowed classification of neurodegenerative diseases as primary or vascular, as well as separate analyses for AD, PD, and ALS. 
  • Median age at the start of follow-up was 47 (interquartile range, 41-56) years, and 24,323 (39.4%) of individuals with stress-related disorders were men.
  • Median duration of follow-up was 4.7 (interquartile range, 2.1-9.8) years. 
  • Risk for neurodegenerative diseases was 57% higher in persons with a stress-related disorder than in unexposed persons (HR, 1.57; 95% CI, 1.43-1.73) in Cox proportional hazards regression models, controlling for multiple confounders.
  • Risk increase with stress-related disorder was greater for vascular neurodegenerative diseases (HR, 1.80; 95% CI, 1.40-2.31) than for primary neurodegenerative diseases (HR, 1.31; 95% CI, 1.15-1.48). 
  • Risk was statistically significantly increased for AD (HR, 1.36; 95% CI, 1.12-1.67), but not for PD (HR, 1.20; 95% CI, 0.98-1.47) or ALS (HR, 1.20; 95% CI, 0.74-1.96). 
  • Findings in the sibling cohort confirmed those in the population-matched cohort.
  • Sensitivity analysis showed some attenuation of the associations after additional adjustment for cardiovascular diseases diagnosed before the end of follow-up.
  • On the basis of their findings, the investigators concluded that stress-related disorders are associated with substantially increased risk for neurodegenerative diseases later in life.
  • There was a statistically significant association of stress-related disorders with AD, but not with PD or ALS, which may partly reflect the relatively young cohort and the low incidence of PD and ALS at a younger age.
  • The observed associations were independent of multiple confounders including familial factors, based on similar results in the population-matched and sibling cohort analyses. 
  • The stronger association for vascular than for nonvascular neurodegenerative diseases suggests a potential cerebrovascular pathway.
  • The lead investigator told Medscape Medical News that finding strategies to lower the risk for cardiovascular diseases in patients with stress-related disorders may also lower future risk of developing neurodegenerative diseases. 
  • Biological mechanisms may underlie the association between stress and neurodegeneration, as chronic, repeated, or intense stress may impair the hypothalamic-pituitary-adrenal axis and alter stress hormone levels.
  • Stress increases cortisol level, which may induce microglia and astrocyte activation, overproduction of proinflammatory cytokines, and oxidative stress, potentially causing chronic neuroinflammation and subsequently increasing the risk for neurodegenerative diseases.
  • Similar mechanisms may also explain the link between psychological stress and cerebrovascular impairments, and cardiovascular diseases are known to be long-term physiological health consequences of stress-related disorders. 
  • Vascular factors may therefore explain the association of stress-related disorders with neurodegenerative diseases and the relatively stronger association with vascular neurodegenerative diseases than with primary neurodegenerative diseases.
  • Vascular factors may also worsen symptoms and accelerate progression of AD; AD and vascular dementia often occur simultaneously and are difficult to distinguish clinically. 
  • Another factor contributing to the observed associations may be lifestyle changes after the diagnosis of stress-related disorders, such as increased smoking and alcohol use, substance abuse, or sleep disorders, which could increase risk for neurodegenerative diseases.
  • An expert commenting on the study for Medscape Medical News noted that poor lifestyle choices such as these could significantly affect brain and vascular health. 
  • That expert highlighted the potential for identifying those at risk for dementia based on stress disorders earlier in life, which might allow earlier interventions to try to change the brain and body’s physiological and behavioral response to stress. 
  • Educating the general population regarding these findings and their significance could help them seek the appropriate treatment for chronic stress or trauma. 
  • Study limitations include reverse causation and surveillance bias, as cognitive impairment, depressive symptoms, and other symptoms of stress-related disorders may be early signs of dementia and PD, or stress-induced decline in cognitive function may result in earlier dementia onset among patients with stress-related disorders. 
  • However, the 5-year lag time in all analyses argues against reverse causation or surveillance bias.
  • Other limitations include possible underestimation of the real association between stress-related disorders and neurodegenerative diseases, lack of validation studies for the diagnoses of stress-related disorder in the Swedish National Patient Register, insufficient statistical power for analysis of rarer outcomes such as ALS and PD, and potential residual confounding. 

Clinical Implications

  • Stress-related disorders are associated with substantially increased risk for neurodegenerative diseases later in life, based on a Swedish population-matched and sibling cohort study.
  • The stronger association for vascular than for nonvascular neurodegenerative diseases suggests a potential cerebrovascular pathway.
  • Implications for the Healthcare Team: Finding strategies to lower the risk for cardiovascular diseases in patients with stress-related disorders may lower future risk of developing neurodegenerative diseases.

The above should be taken into account when placing someone like Elizabeth who has complex PTSD on either acute ward or PICU wards which are noisy, volatile and stressful for the patient. In contrast, a care farm would be the answer – a natural environment with animals then it would be not necessary to restrain and inject causing further trauma to the patient. Consideration should be given in the UK to providing correct facilities such as this. Camphill Community Trust have good facilities where people who have learning disabilities and autism can learn new skills and work with specialist staff in therapeutic environments. Why should facilities such as this be deprived to MH patients who are misdiagnosed.

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