“Autism is like a sponge absorbing everything around you then you become stressed”

Because my Mum’s car has been damaged she ordered a wheelchair for me as I have balance problems walking. It was fantastic to be in the wheelchair. When we arrived at the GP surgery we were early and had to wait I then began to feel stressed as there were other people waiting but my Mum explained we were early and that she had to allow extra time to get there without a car. I became irritated by my Mum moving the wheelchair which was on a slope. Also she could not control the wheelchair which I found irritating. I was then asked to come into the surgery to be weighed but at first the machine did not work. I then was asked to put my arm into a machine to test my blood pressure which I did not like at all.

I became irritated again by a further wait outside and shouted “why are here here” and who is Dr ……..” “I want to go now” but my Mum insisted we were early and should wait a bit longer. She pushed the wheelchair away from the other people because she could see I was getting stressed.

Then someone announced a room suitable for a wheelchair had been found and that they were getting it ready or something. I was not happy by the time we got in there and it was a small room and I felt claustrophobic and there were two female professionals in there plus my Mum. My Mum had again failed to control the wheelchair in getting into the room. We were asked if we did not mind a student doctor to carry out the health check. I did not mind and Dr ……………….was very nice. She asked me how I was feeling. I have trouble answering questions because of my autism – I think I said fine but I am not fine really and sometimes things I say come out wrong and I cannot stop this from happening and neither can I stop my reaction to some things. My Mum started to talk and said things were not fine and was going on about it. I feel uncomfortable in answering questions but I was asked questions regarding my mental health too and autism is not a mental health condition and I have looked everything up on the internet about autism which is what I have. I was also asked about whether I was suicidal. Sometimes I have felt that way especially when I was on the ward but I have not ever tried to take my life. I just find it hard to cope sometimes and do not feel part of the community and I do not feel like a person at times. I have been told I have a hormone imbalance and have had endocrine tests done. I am glad I am now getting physical health attention as under the mental health and during the lockdown I felt my physical health declined and I spent most of my time in my room on the ward because I could not stand the noise.

I was then asked about my living accommodation which is an independent flat. I have been in supported living and housing before which has been awful but I found it triggering to hear my Mum talking about how dreadful the schemes have been and I reacted to this. I am happier living in my own home because it is more comfortable. From my balcony I can see the birds and my pigeons. The thing I do not like is the noise. There are major works going on right now and scaffolding outside my flat and builders shouting to one another. I have sensory issues and found it difficult on the wards so this is not good.

The health check did not take long but now I am getting messages on my phone to book appointments for assessments. I tried to do this but gave up because it was too stressful and I find it difficult to talk on the phone. I usually text my mum and I asked her to book the appointments in the end.

After the health check my Mum pushed me in the wheelchair through the town to the garage to pick up her car. It needs a new exhaust and catalytic converter but it is not cheap but when I got to the garage I became stressed again because my Mum was taking her time getting the wheelchair in the car – it is not a suitable car for a wheelchair but eventually we got back to my flat and I felt happy to be home as I get stressed out when it is not quiet and peaceful

Tomorrow I have to be up early for another blood test for B12 and Folate Acid but I refuse to take the folate acid any more as this made me ill.

I have written this on a piece of paper and asked my Mum to post it on her blog.

For many years there has been massive dispute on Elizabeth’s diagnosis and Elizabeth disputes the diagnosis herself which shows she has FULL capacity. Her exact words are:

“When I said that I had autism they didn’t believe me. This is very bad the way I’ve been treated. I have been treated for Schizophrenia when I did not have it.”

How can an initial diagnosis be so totally overlooked and then switched to “Schizophrenia unspecified”, then to paranoid schizophrenia “treatment resistant” and then then it is recorded in files as “Developmental/autism” but it is also recorded “Anterior Region Medial Temporal Compromise” and this is NOT a mental illness but brain injury.

The significant entries under ICD10 codes on the Discharge Form dated 5 June 2021 prompted me to enquire further but today I encountered difficulty and there appears to be a wall of silence. The Clinician on the Discharge Form is not the Responsible Clinician from Suffolk Ward which is surprising for a start. Surely a Responsible Clinician would be the person to complete the Discharge Notice? The Discharge Notice was completed by BA who is a nurse under Home Treatment Team and who visited Elizabeth at her flat after discharge. Upon telephoning this morning I immediately felt as though others were shielding her when it became evident I wanted an explanation as to the real diagnosis. The Discharge Notice states:

Other abnormal findings on diagnostic imaging of central nervous system

Other and unspecified symptoms and signs involving cognitive functions and awareness

Other abnormal findings on diagnostic imaging of central nervous system

Pruritus unspecified.

The above is stated under ICD10 Codes regarding Principal Diagnosis (on Discharge) and ICD10 Codes Care Cluster.

This means that Elizabeth does not have a mental health diagnosis as Schizophrenia is F20. All the diagnoses are physical and physical ICD10 codes come FIRST as does primary care as opposed to secondary care. This is all mentioned in the DSM. This is the most significant report and most accurate I have ever come across under Barnet Enfield and Haringey MH Trust.

Elizabeth’s GP had tried to play things down and reassure me that she had spoken to the Responsible Clinician of Suffolk Ward and mentioned the ICD10 codes were erroneous and recorded by an administration clerk. I got the impression the codes were entered by BA, a qualified nurse under Crisis/Home Treatment Team but to even get to speak with her I had to go through an astonishing barrier.

I was told that this person did not work there but I insisted that more than one person told me to the contrary and I had contacted Healthwatch Enfield. I was then given another number to phone which led me to Enfield Community Treatment Team who are not whom I wanted to speak to. I was then given – 0800 151 0023. When I phoned I was told that BA was working from home. Eventually, I was put through to BA which was a relief. BA thought I was complaining about her decision making to discharge Elizabeth but I was not complaining about that at all. In any case it would have been the RC of Suffolk Ward’s responsibility to discharge Elizabeth and who surely should have completed the discharge notice. BA then explained she could not discuss the diagnosis with me due to confidentiality. I told BA that I was next of kin, a McKenzie Friend and had Power of Attorney. Despite this, BA would not reveal any information but because I persisted I finally got another name out of her – namely RB, her Boss. Before I ended the call I commented that Elizabeth, who now had only physical health conditions relating to central nervous system should not in fact be under the mental health team at all but under a team specialising in neurological conditions. All the community MH team are doing is administering Clopixol Depot fortnightly (Enfield Community Rehab Team) so why cant this be done through another avenue.

I have yet to speak to RB but will have to go through all this rigmarole again and I do not have hours to spend today. I definitely wish to speak to RB at some stage as I am trying to find out what the real diagnosis is. I will make sure I am with Elizabeth so there are no excuses not to answer our questions ie which central nervous condition does Elizabeth have?

In addition to trying to sort my car/insurance out I have had to organise a wheelchair for Elizabeth as I am now without a car. I have to walk to Elizabeth’s flat which is time consuming, carrying heavy shopping is a problem because I have weakness in my arms due to having had a stroke. It is not just the inconvenience you are then faced with lack of communication from professionals who ignore you, treating you as though you are invisible. The fact is I would not have a complaint if communication was good or even if something went wrong but what the NHS does is cover things up. Staff stick together protecting one another, whereas if they were honest I would not have a single complaint. If they are trying to protect their jobs, this could be because the NHS is rife with bullying, not just towards me as a carer but towards their own staff. Previously I remember a Registered MH nurse during the time Clozapine was deprived for four days stating that it was more than his job was worth to give me the medication I needed to stop Elizabeth from going into cold turkey withdrawal. This was when the team wanted to force return her back into care rated good by the CQC, whose inspector sympathised with the team. I have it all in records but now I am faced with this current situation of trying to get to the bottom of the truth and encountering such protection from colleagues towards one another making matters near impossible whilst they play on confidentiality, dismissing Power of Attorney again and again.

I have not been able to clarify the real diagnosis but am aware Elizabeth did have a scan about year ago prior to her admission to Chase Farm Hospital Enfield. We are still awaiting the CTR minutes which NAS is escalating.

I then had to ring Elizabeth’s GP surgery. I was told by Elizabeth she had received a text message to make a health check appointment but no-one had told me. Elizabeth requested me to make the call and now she has an appointment at 2.30 tomorrow with a doctor I had not heard of before. I pointed out that I could only bring Elizabeth if the wheelchair had arrived tomorrow morning.

As featured in my last blog on top of everything else I am having to deal with the above.

Today I spent a very long time phoning Police to get a crime reference number as well as for an update. No update could be given as the adviser could not access the notes but I obtained the crime reference number. I then received a call from Mr Clutch who have gone out of their way to try to obtain the very best price for both catalytic converter and exhaust. Having tried over four sources they were told only a BMW dealership could help and received a rip-off price from Stephen James for £3000. After negotiation Stephen James reduced this price to £2,300. I find this price drop quite amazing and still think this is a rip-off price.

I now have loads of inconvenience thanks to these thieves as I have to turn my attention to my insurance as well as to Elizabeth as I relied on my car to get from A – B.

I have had to shop around and I have managed to get a better quote for £1400. I have then had to put in a claim through my insurance.

Tomorrow a wheelchair is coming for Elizabeth because she has an appointment with her GP Surgery who once again have only notified Elizabeth and treat carers like nothing. If it was not for Elizabeth I would not have known but when I spoke to the reception I had to clarify when the word “mental health” was mentioned. It was really upsetting to me to hear these words mentioned and I then asked if the doctor concerned, Dr D was a psychiatrist as I have heard of GP’s doubling up as psychiatrists before. I needed reassurance that this was not the case and this was not done as a MH assessment and some kind of trick. Elizabeth has not long since had a health check and that is why I was concerned. The GP surgery is now taking an interest but have tried to play down what is written on the discharge note and today I made some enquiries. I will write this on a separate blog including Elizabeth’s very own comments that she had written on a piece of paper. I will add to my comments on the BMW car in due course but at the moment it is with Mr Clutch who did try their best to get a reasonable price but in the end the prices were still too high at £2,300 for just the exhaust.

The GP surgery is the same that Elizabeth has been under since she was born.

The GP surgery is divided into two. Front entrance is for covid vaccinations, very busy with people queuing and the back, for appointments and reception. All appointments have to be made on line or by telephone. It is not always possible to access internet or even get to speak to a GP when you call. I was told last week I should call at 8.00 am as I was too late for an appointment by midday but I was impressed with the receptionist I chatted to who seemed to understand fully Power of Attorney, unlike so many professionals including doctors. In terms of communication when I explained I often felt ignored, disregarded and treated like I was invisible by the surgery it was nice to hear that it was wrong to dismiss POA for Health and Welfare especially when Elizabeth needed help not only to make appointments but to attend them as she has come out from a year’s incarceration under MH more disabled than ever.

Today I phoned the GP surgery at 8.00 am and was No. 25 in the queue. I waited patiently for a long time until finally I spoke to a receptionist. I requested a telephone appointment with Elizabeth’s Doctor and gave my mobile number. I was told it would not be possible to speak to Elizabeth’s doctor as she was fully booked but another doctor instead.

After this, I tried to enquire about Elizabeth’s benefits and spent more time on the phone to DWP. Absolutely noone has tried to help with her benefits since PIP stops when someone goes into hospital but Elizabeth was discharged on 28 May and not so long ago her entire benefits stopped due to error by someone under DWP. Good job I noticed and thankfully Power of Attorney over finances was not dismissed like the one for Healthcare with the excuse that this is only effective when no capacity and thankfully I was able to deal with matters. To think that Elizabeth once was working. Had she been given the right kind of support instead of mountains of mind altering drugs she might not be in this position to this day.

It just so happens that it is has been recorded in the GP’s records about loss of capacity as the surgery obtained advice from an organisation called MDDUS regarding what to write in a letter excusing non release of medical records on the basis that Elizabeth had no capacity – I could not believe it when I saw this in the files however this would mean for sure that the surgery should deal with me as POA, especially since it was Elizabeth’s request under GDPR Rules to have sight of her medical files which are still awaited. It makes you wonder what there is to hide in such files, especially when I have read the discharge notice and other disturbing things.

The hospital discharge notice is not signed by the Responsible Clinician from Suffolk Ward Dr HM but upon enquiries today I have found out this has been produced by a doctor (Dr BA) from the Home Treatment Team under Chase Farm Hospital Enfield. There is not one mention of mental health disorders. Schizophrenia is, for instance F20, but only physical health ICD10 is mentioned. I wanted clarification from the GP as to what was the real diagnosis for Elizabeth and so did she. I also wanted to speak to the Practice Manager who has not phoned me back on two occasions.

Anyway, getting back to the GP, I had noticed a text message on my phone stating that she had phoned Elizabeth. I specifically wanted to speak to the GP myself to clarify the above and to inform her of recent updates in terms of appointments that I had made but only thanks to Elizabeth informing me of text messages she had received herself. So from this, you can gather that Elizabeth does not mind sharing information with me and in fact found it far too stressful to deal with making the appointments herself holding on the phone for ages going through different options.

I then had to phone the GP surgery again and this time, I was this time No. 9 in the queue. Elizabeth had spent most of the day lying in bed exhausted. She is on a high dosage of Clopixol depot that just makes her so tired and incapable of doing anything much. I have never seen Elizabeth so drugged up and sedated and question how this could possibly be doing her any good. I was advised that the Consultant Psychiatrist would be taking her off the drug but here are the side effects of Clopixol Depot and there is no guarantee he will take her off it as it is subject to six weekly reviews apparently.

Here are the Clopixol Depot withdrawal symptoms:

Nausea, anorexia, diarrhoea, rhinorrhoea, sweating, myalgiass, paraesthesiass, insomnia, restlessness, anxiety and agitation.  Rare side effects are slow heartbeat and abnormal ECG heart tracing.  Life threatening irregular heart beats.

Elizabeth has already been recorded as being of “high risk of mortality and high risk of choking”. What kind of Dr puts someone who is a poor/non metaboliser on such a high dosage. 400mg is maximum and they have entirely ignored the fact that in the files it already states that there is an irregular heart beat and she is treatment resistant. There is definitely something wrong with her breathing. This probably all been covered up if she had been sent away to the Priory for another six months. Thankfully, Mencap, NAS and Access put a stop to this but where are the CTR minutes? That is a very good question after all this time they are nowhere to be seen. I wish I had taken the minutes instead as these would have been immediately ready.

After I finally got through to the receptionist I explained that I was not at all happy as I had spent so much time on the phone this morning out of concern for Elizabeth’s wellbeing. Elizabeth’s phone was practically dead but I got to hear that the GP had phoned Elizabeth excluding me, when I needed to speak to her myself. I then finally received a call from the GP but only after I had made a fuss about this. The GP insisted she speak to Elizabeth first to ask if it was OK to talk to me. I found this astonishing as I am the one who needs to know about appointments in order to be able to take her to them as Elizabeth can barely walk. So I explained I had Power of Attorney and was told that this did not count because every time the GP would need to gain Elizabeth’s permission before speaking to me, despite the advice from MDDUS to say she had no capacity. Elizabeth gave her permission to the GP to speak to me and then the GP spoke to me briefly and I told her that I was concerned about Elizabeth’s breathing and what was written on the Discharge Notice. The GP was dismissive about the diagnostic findings written on the discharge notice ie “abnormal findings on diagnostic imaging of central nervous system”. This was trivualised by her stating this was entered by a administration staff in other words, hence of no consequence. The GP further tried to reassure that she had checked with Dr HM (RC) of Suffolk Ward. I then went on to say that this discharge notice had a doctor’s name (Dr BA from the Home Treatment Team) on it as well as the care coordinator from Enfield Community Rehab Team (PM). Under Allergy – absolutely nothing written. Under Carer’s contact (unavailable Data). The abnormal findings on diagnostic imaging is not just mentioned once but twice. There is absolutely nothing under mental health re ICD10 codes and that is because under the DSM, primary care diagnoses come first. When I checked with Elizabeth she did remember having a scan so such comments should never be dismissed in my opinion. Elizabeth was discharged to her independent flat on 28 May and referred to Enfield Crisis Resolution and Home Treatment Team so how comes this discharge note was prepared by Dr BA of the Home Treatment Team when Dr HM was the Responsible Clinician from Suffolk Ward and I had requested the discharge note many times. The discharge note was dated 05 June but the referral date is noted to be 24 May 2021.

It is stated “future management by GP and Enfield Community Rehab Team” but surely this should only be the GP because no mental health diagnosis is mentioned on the discharge notice so what is Elizabeth doing under a MH team?

I spoke to the GP about my concerns that I was not informed about the most recent referrals for ECGs and blood test. If it was not for Elizabeth I would not have been informed at all and been able to make the appointments. To top it all , Elizabeth received two calls from Enfield Community Rehab team about another appointment which I would not have known about otherwise. Sometimes Elizabeth forgets to tell me immediately when this could have all been arranged sooner.

Because Elizabeth is disabled and unable to communicate effectively over the phone – for instance she gave up when she tried to make an appointment herself and became stressed out by the lengthy wait and she would also would need taking to such appointments. It is a great pity that there is not better communication. Her care coordinator has commented on Elizabeth’s breathing and we have all noticed there is something very wrong but this is not surprising when certain doctors have not shown any regard for her physical health or the fact she cannot metabolise the drugs according to the P450 liver enzyme tests and they have prescribed at maximum levels – it is no wonder therefore Elizabeth’s physical health has been damaged and she has suffered injury.

I was not in the slightest bit reassured by the GP trying to brush aside the comments on the discharge note as though they were of no significance. On the contrary, when files are refused under GDPR Rules, it makes me all the more curious to know exactly what is meant by “abnormal findings on diagnostic imaging of central nervous system”.

The appointments for ECG have been made and diarised plus the blood test but this seems to be a duplicate. Elizabeth was prescribed Folate Acid but this made her very ill but what about B12. The other blood test is for Folate Acid and B12 but B12 has not even been prescribed.

The GP wanted to speak to Elizabeth and asked how she felt to which she replied “not good”. The GP discussed about weight gain. Again I pointed out that this was due to the drugs prescribed as well as underlying physical conditions such as PCOS and it could even be thyroid.

I mentioned that Elizabeth had to frequently rest during the day and had no energy whatsoever. I questioned her current treatment to which she said she would speak to the MH team. I then said what is Elizabeth doing under a MH team when she has all physical health conditions? When someone has a neurological condition they should not come under a MH team and I had written to JR, Commissioner of North Central London CCG because I thought Elizabeth should be under “Headways” who are brain injury specialists. The GP said she was referring Elizabeth to a Neurologist. The last time Elizabeth saw a Neurologist was back in 2014 when he saw signs of TD (tardive dyskinesia) and commented she would be better off all psychiatric drugs altogether. He mentioned about a referral to a geneticist and so I mentioned about a referral to Dr Hakin, not only a Geneticist but Rheumatologist and this would be appropriate because Elizabeth has complained of chronic pain and this could be rheumatoid arthritis. Whilst I am not a doctor I am a witness to Elizabeth’s pain discomfort which has been ongoing for far too long without investigation.

Elizabeth was also a frequent visitor to the GP and calling ambulances and Police because she was suffering from chronic pain but nothing was done about it up until now that I have obtained the most disturbing current files and read the discharge notice.

As I am writing more drama which I could well do without. I have had to shout out of the window and run downstairs to confront thieves trying to steal the catalytic converter of my BMW car. Unfortunately, I was too late to confront them and I have just had a visit from Police to whom I reported that there had been a spate of such thefts along my road. I only wish I had got outside sooner but I did get a good look at one of the men concerned who was not wearing any face covering I could most probably identify him and hopefully one of my neighbours had captured some footage on his CCTV.

I have spent the day helping Elizabeth in the flat and most of the day on the phone. The benefit system is at breaking point. For instance, once paperwork has been received, the DWP refer things to a private company for assessment. I telephoned this private company and they have a backlog going back to February would you believe. I mentioned my concerns regarding a telephone assessment because Elizabeth, who has autism, is unable to communicate well in phone calls but was told that not all cases were referred to see an assessor so we will have to wait and see.

Elizabeth has phoned me many times this evening out of concern when she heard about my car. Quite often she will show concern for the wellbeing of others and especially animals.

I have enjoyed listening into a zoom meeting by “Stronger Together” and there were some very inspiring carers and people of experience speaking. Unfortunately I could not listen in all day and hope that I can do so at a later stage as it was all being recorded. I am going to ask as I would like to share this if this is at all possible. I know that Elizabeth would have benefitted by listening in to some of the wonderful speakers.

Yesterday was a very special occasion which went well despite the not such good weather but it was touch and go whether Elizabeth would attend. Any events such as this are a complete ordeal for Elizabeth now whereas once it was not a problem.

The wedding was not a lengthy church wedding but a Registry Office service booked in a library setting. Only two witnesses were allowed and there was a very strict policy of wearing masks. A limo took us there in style and it was the first time Elizabeth had travelled like this. Just myself and Elizabeth were witnesses and after that photographs were taken in a nice park location prior to the venue which was a local pub. The official occasion was followed by a very small reception as many people could not attend the main reception arranged in August. Elizabeth looked nice for this occasion and had her hair and makeup done. The main reception later on in the year is to be held on a yacht in Gibraltar but Elizabeth has refused to go to this and is not well enough. I may have to to come straight back to the UK afterwards.

Elizabeth’s sister wore a white wedding dress but this is not her main wedding dress. We stayed overnight in a hotel nearby as ceremony was early the next morning.

Elizabeth had the depot injection the day before and I was worried about how she would be afterwards. This “medication” does nothing for Elizabeth and is administered by a psychiatrist and nurse who visit her flat fortnightly. She is on a high dosage which was 400mg but has been reduced to 350mg. I thought there would be a further reduction of 50mg down to 300mg but the RC Dr IM from Enfield Community Rehab refused to reduce it any further and we were told that it will remain at 350mg pending a review which would take place every six weeks. There is nothing in writing to confirm this or any guarantee that there will in fact be a further reduction but just a review. Meanwhile Elizabeth’s breathing is really bad and very noticeable whilst we were away and I stayed with her in the hotel room. Various tests are being carried out by the GP but I fear too late. Elizabeth was admitted to hospital in the first place following a visit to her GP surgery when she became distressed as she thought they were ignoring her but it was the height of the lockdown and everything had come to a standstill. However leading up to all this Elizabeth was constantly calling into her GP and phoning ambulance services complaining of chronic pain. Noone took any notice and it is only now the GP is taking things seriously as according to the Discharge Notice there is nothing but physical health concerns noted. I feel that there is something seriously wrong with Elizabeth and it is no wonder as I have acquired the latest files which indicate what disturbing treatment Elizabeth has had over the past year.

The discharge notice was clear in stating “abnormal findings on diagnostic imaging of central nervous system and other and unspecified symptoms and signs involving cognitive functions and awareness. No-one has yet explained what this means. The GP was not sure herself and was going to check but has not got back to us with her confirmation. Dr Beatrice Awudu was the clinician who produced the Discharge note from Barnet Enfield and Haringey MH Trust. Having looked up central nervous system conditions I sent an email to Dr IM of Enfield Community Rehab Team and Dr HM of Suffolk Ward as well as the GP at Carlton House Surgery Enfield but have received no response or clarification as to the above comments and when this was in fact discovered and how long such condition had been known. My question would be as to why Elizabeth is even under a MH team and bearing in mind physical health conditions she should therefore only be under her GP surely or another specialist team.

In my email I listed several conditions of the nervous system amongst which included Parkinsons and MS and I then enquired as to what the correct diagnosis is now for Elizabeth. So far it has proven impossible to find out as noone is responding. The GP only seems to respond to Elizabeth yet I am the one who has to take her to the blood tests and various other appointments. If it was not for Elizabeth sharing information and informing me I would never have known about any of these tests or appointments and I see this as bad communication because now her physical health has been compromised. Because Elizabeth has informed me I have now been able to arrange appointments for two Echocardiograms at two different clinics. One is for US Transthoracic Echocardiogram, the other is for an ECG 12L. In addition another blood test for B12 and Folate Acid but the latter has just been prescribed which had terrible effect on Elizabeth.

Surely under the Informed Consent Act Elizabeth would be entitled to know all about how the reduction off Clopizol Depot will be carried out. I realise that such reductions should be done very slowly but find myself questioning whether 50mg is too steep a reduction. Elizabeth has only had mild symptoms of withdrawal – no different from what she was suffering prior to this. If no reduction is done in six weeks I will most certainly be questioning matters bearing in mind the concerning physical health condition relating to central nervous system.

In the meantime I will look up prescribing guides in this respect. The depot injection is extremely distressing for Elizabeth and I would question why all these doctors who have been involved over the past year have ignored allergy to Risperidone as well as prescribed maximum dosage when they were made aware Elizabeth is a poor/non metaboliser. It would seem that such doctors do not care about any consequences in respect of decline to physical health. I would further question as to how long these central nervous condition abnormalities became apparent Has from and did this injury occurred during the last year or prior. When institutions such as Elysium and Cygnet drug to enormous levels resulting in “Mews Score 2” and “of high risk of mortality and choking” this is why vulnerable people like Elizabeth die and it is not due to Covid but because of neglect in prescribing by teams of professionals whose doctors were responsible for dismissing the fact that Paliperidone (Risperidone depot) was previously found to be allergic to and the P450 liver enzyme test results and other private tests. They failed to check back in the files as it was recorded by Elysium there were no such allergies. The CQC SOAD also failed to take into consideration evidence which pointed to underlying physical health concerns. It is only now the GP is looking into matters but all too late. Elizabeth’s physical health has been neglected and there should have been such referrals in the first place especially Endocrinology and MRI.

Last of all, there is no sign after all this time of the CTR minutes. NAS are looking into this. These minutes should have been received two weeks after the CTR but it is much longer than that now and now things are being escalated to NHS England. Elizabeth has no care plan, no care in place whatsoever apart from the depot they are supposed to be reducing her off completely. I have had no care act assessment – the only assessment according to the files which was attempted back in 2014 was a mental health act assessment on me which is very disturbing. Luckily I did not go. Elizabeth has come out of NHS care completely disabled and dependent upon me and this has left me in a position where I have had to forget about working for the time being. It awaits to be seen whether permanent damage in terms of injury has been caused to Elizabeth. Whilst there is an abundance of money to spend on facilities there is nothing in the community but yet social services can spend a fortune on legal action against you taking you to County Court for displacement or Court of Protection as has been tried. When you try to find out information from this same team who are still involved in the “care” and only “care” of administering clopixol depot which does nothing for Elizabeth, it makes you wonder how this is allowed to go on. The money spent by Commissioners from North Central London goes on out of area facilities such as Priory, Huntercombe, Cygnet. You only have to look at the files to see how inadequate the local NHS wards are and that all they do is hold on to a patient and drug them before releasing them back into the community more disabled than ever. If they cannot manage a patient they send them away for punishment to the above private facilities and yet when there is sufficient doubt on diagnosis the commissioners refused a CTR until Mencap, NAS and Access got involved.

When you challenge the Trust and they have nothing to say, they call you a vexatious complainant and gang up against you. They give you one point of contact ie Pals but I also was given the Manager of Enfield Community Rehab Team. There was a long list of nasty comments against me by those at the very top of the Trust and it is when you encounter such defence and wall of silence that you know they have plenty to cover up.

I have turned to NHS Resolution in respect of the £100 of items that have gone missing from the ward, a second unlawful detention and now evidence of serious physical health concerns. They have appointed Weightmans Solicitors and outlined that the last time £1 compensation was awarded because of the Bostridge case so I pointed out that this time the unlawful detention was longer but in addition the missing items plus serious physical health concerns should be taken into account. So far absolutely nothing but a wall of silence by the NHS (Barnet Enfield and Haringey MH Trust who have provided in one year:

Ruby Ward St Pancreas PICU

Seclusion – Chase Farm Hospital Enfield

Cygnet Godden Green – now shut down (Required Improvement)

Seclusion -Chase Farm Hospital Enfield

Elysium Thornford Park Thatcham Berks – two months of hell where they drugged to the hilt and gave face down restraint.

It would seem that the night bed management alongside nurses from Suffolk Ward only wanted to be rid of Elizabeth and gave no consideration towards her or her family in the location of facilities only in respect of whether these facilities could accommodate further punishment by way of seclusion. This callous attitude extended to Xmas Day when a bed had been found at the Priory Darlington.

St Andrews &Huntercombe – Full Cannot accommodate  
Cygnet Woking – full, Cygnet Brierly – full, Cygnet Beckton – declined and Cygnet Appletree  
Priory Nottingham – no seclusion  
Southern Hill PICU – no beds

St Ann’s Hospital Sunflower Ward

Elysium locked Rehab Bromley Road

Priory Hemel Hempstead locked rehab.

Not one of these locked facilities have done anything whatsoever to help Elizabeth get better. Sending her away time and time again in just a short space of time has been damaging to Elizabeth and her family.

The above was prescribed at 400 mg fortnightly which is maximum dosage but since confronting the community RC with the Discharge Notice that only contains physical health concerns under ICD10 the RC is withdrawing Elizabeth completely. Both Elizabeth and I are going to diarise this withdrawal on this blog. I would not have known about the physical health concerns or seen the discharge note if Elizabeth had been sent away out of area to the Priory. There is no other section 117 “care” in place since Elizabeth’s release from hospital apart from this depot. Elizabeth has been discharged back to her independent flat as always with nothing in place and I was trying to get her bath/shower done but to no avail. She can hardly walk and has to constantly rest. To top it all the DWP have stopped every bit of her benefits and she is far too ill to work. This is how people are treated in the UK who are disabled and made worse by their treatment under the NHS.

2021 ICD-10-CM Codes for Schizophrenia (F20)

https://icdlist.com/icd-10/index/schizophrenia-f20

There is no mention of the above F20 (Schizophrenia) under the ICD code and this is the first time I have ever noticed anything like this. This makes me think that all along Elizabeth has been misdiagnosed.

There is however mention of:

OTHER ABNORMAL FINDINGS ON DIAGNOSTIC IMAGING OF CENTRAL NERVOUS SYSTEM

OTHER AND UNSPECIFIED SYMPTOMS AND SIGNS INVOLVING COGNITIVE FUNCTIONS AND AWARENESS

PRUITIS

I am most concerned at reading the Discharge Notice and this has prompted me to look up all about central nervous system disorders. Had Elizabeth been sent away to the Priory, Hemel Hempstead I would never have known and it is as though this could have been covered up.

The central nervous system is the largest and the most complex part of the nervous system. It works to align the activities of all the body parts and is vulnerable to different disorders and diseases. The article throws light on the various disorders of the central nervous system.

The central nervous system (CNS) plays an important role in controlling the human behavior. It comprises two main components: the brain and the spinal cord. This system is held within the dorsal cavity, with the brain in the cranial cavity and the spinal cord in the spinal cavity. The nervous system is made up of nerve cells, called neurons, which allow the various parts of the body to coordinate with each other through the brain and the spinal cord.

A person affected by any type of disorder of the CNS may be identified due to the symptoms such as delay in developmental milestones, changes in activity, reflexes or movements, abnormal head growth, variations in level of consciousness or mood, muscle rigidity, tremors or seizures, severe headaches, visual changes, and lack of coordination.

Disorders of the CNS

Transverse Myelitis (TM)

It is an inflammatory attack on the spinal cord, with no brain or optic nerve involvement. It is mainly a monophasic condition where the attack occurs only once. In rare cases, the patient may experience more than one inflammatory attack on their spinal cord, and this condition is called recurrent TM. Some patients may also experience an inflammatory attack in the spinal cord along with an underlying rheumatic disorder like Lupus or Sjogren’s syndrome. Since the underlying cause is unknown, it is also referred to as idiopathic TM. The symptoms of TM develop quickly within a few hours to a few weeks. The spinal cord is responsible for carrying motor nerve fibers to the limbs, trunk, and sensory fibers from the body back to the brain. Inflammation within the spinal cord disrupts these pathways and causes symptoms like limb weakness, sensory disturbance, bowel and bladder malfunction, back pain, and radicular pain.

Neuromyelitis Optica or Devic’s Disease

It involves inflammatory attacks in the spinal cord and optic nerve. A person affected by this condition is at a higher risk for multiple attacks of spinal cord inflammation or optic neuritis, or both. The main symptoms of NMO are loss of vision and spinal cord dysfunction. The visual impairment is manifested by visual field defects, loss of color vision, decreased visual activity, etc. The spinal cord dysfunction causes muscle weakness, reduced sensation, and loss of bladder and bowel control. Patients may also experience an acute and severe spastic weakness of the legs (paraparesis) or all four limbs (tetraparesis).

Multiple Sclerosis

It involves an inflammatory attack that may occur anywhere within the CNS, i.e. brain, spinal cord, or optic nerves. The disease usually occurs in young adults, and is more common in females. Most of the patients have brain lesions during the onset of the disease. A person affected by multiple sclerosis may observe symptoms like muscle spasms, dysarthria, lack of coordination and balance (ataxia), hypoesthesia and paraesthesia, visual problems, and loss of bladder and bowel control. Its relapses are quite unpredictable and happen without any warning or obvious inciting factors.

Alzheimer’s Disease

It is a progressive, neurodegenerative disease that affects the brain and is a common form of dementia. It reduces the generation of certain brain chemicals which are essential for communication between the nerve cells like norepinephrine, soamtostatin, acetylcholine, and serotonin. The causes for the disease are not completely known but abnormal protein deposits in the brain, environmental or genetic factors are some suspected causes. Alzheimer’s disease leads to impaired memory or judgment, language deterioration, emotional apathy, and impaired visiospatial skills.

Some other disorders are Parkinson’s disease, epilepsy, amyotrophic lateral sclerosis (ALS), Huntington’s chorea, etc. Presently there’s no cure for these disorders but treatments like medication, rehabilitation activities, clinical trials, and assistive technology may be beneficial for the patients.

The discharge notice went directly to Elizabeth who passed this important document to me.

Elizabeth will write her own comments which she has asked to do but I am going to start off this blog by stating that professionals have no idea what distress they have caused to my daughter. Every phone call, every visit from professionals causes her extreme stress. Just leading up to the date the depot is due Elizabeth shows signs of distress and frequently phones/text messages me. I thought she was going to refuse yesterday. I wonder why on earth Elizabeth was prescribed the drug Clopixol at such a high level when they know she is a poor/non metaboliser. The psychiatrist explained to me how the depot would be reduced. It comes in 200mg and he explained and showed me the syringe and then I had to try to reassure Elizabeth. I stepped back when the nurse was with her as I felt she was going to refuse and I tried in vain to explain that the drug was being reduced. It is rare that the NHS decide to withdraw someone from the drugs especially to titrate it down.

The Clopixol depot does not work and Elizabeth can still get very upset on this. It is just a massively strong sedative and she is frequently having to rest and sleep during the day. It is evident Elizabeth cannot sleep the night before such depot is due. I am wondering if she is allergic to it as her breathing is very bad like never before.

After the depot Elizabeth was very angry and upset she was being put through all of this but this is the first time time professionals are taking her off the drug slowly and gradually – but I am not sure this is slowly enough and the doctor explained that on a very low dosage extreme care needs to be taken and that he would have to monitor closely. Unfortunately his increased visits are likely to have a detrimental triggering effect on Elizabeth. I tried to discuss this with her yesterday but she was too distraught. No matter how I have tried to explain that the drug is being reduced she was inconsolable and talks of her life being ruined and not wanting to be around or to live any more. She has never made any attempts on her life but she has described to me that she feels so disabled and worthless – that is how they have made her feel and she should never have been put on the drugs in the first place. I am the only person providing care and support for her right now yet so much money is spent on private locked facilities out of area in Enfield.

I voiced my concerns yesterday that I hoped Elizabeth would never end up on a mental health acute ward again where she is put back on the drugs because she has flared up and shown distress in front of these professionals. If left alone Elizabeth can calm herself but when I tried to address her concerns I quite understood – twice she has been sectioned unlawfully. She is fearful of ending up back to square 1 which is most understandable. A vicious circle is a revolving door and ending up back on the acute ward where it is unbearably noisy and where she will simply be drugged up yet again. Surely there must be a better solution and a facility if need be that can help reduce someone down to nothing in a quiet, peaceful environment. Where is this facility in the UK? I desperately tried to find such a facility and was prepared to pay £10000 per week for it but even if you have money to pay it is not simple and the NHS do nothing to help someone who has been wrongly diagnosed when in fact has underlying physical health problems that are of concern particularly her breathing and the recent file records that show “high risk of mortality” “high risk of choking”. For the past year under mental health care and because of Covid physical health has not been attended to as it should have and this is neglectful of the NHS.

It is no wonder those with Autism/lD end up dying early or could it be one of the conditions listed under Central Nervous System Disorders. It is shameful the way people like my daughter are neglected in the UK and then they try to say “natural causes” when in fact it is massive dosage of psychiatric drugs, face down restraint and lack of exercise, terrible noisy, stressful environment of an acute ward and PICU. Then they try to use Covid to blame matters when it is neglect of physical health and the drugs that are the cause. What kind of doctor drugs someone to such a high level especially when they know that person has had the P450 liver enzyme test which shows “poor/non metaboliser” then to prescribe Risperidone and depot form Paliperidone is negligent when documented throughout the files that Elizabeth was allergic to it. Elizabeth tried to explain herself but no-one listened, then it is written in the files of Elysium that there were no allergies when I informed them directly and sent evidence to the contrary which was ignored by this private institution.

Elizabeth has now been reduced by 50mg down to 350mg. The next depot is due in two weeks and I will add to this blog Elizabeth’s own comments and how she feels. Today I was out with Elizabeth but had to take her home as she felt too tired and needed to rest.

This morning, I decided to visit Suffolk Ward, Chase Farm Hospital Enfield, to find out whether Elizabeth’s possessions had been found and, if not, sort out reimbursement to the value of circa £100, which included Birthday presents going back to February 2021, including M&S leggings and top. These items valued at around £35 were never replaced and the Deputy Ward Manager who took the receipts never got back to me. Also a brand new tuppaware container containing the Birthday cake went missing. Whilst not much money, it is a matter of principle. Elizabeth has recently been discharged from Chase Farm Hospital, Suffolk Ward and several more items of possessions have gone missing ie., black and white Morrisons jacket, new pair of Sainsbury’s sandals and a pair of mock sheepskin slippers. Also, when Elizabeth was chased around the room by four male “nurses” she did not recognise and dragged into a seclusion room to be injected, during this scuffle her handbag was broken and I am requesting this to be replaced too; it was ripped off her shoulders and during all of this she lashed out with her feet and was kicked in the leg in retaliation by a male member of staff. I am sure the Morrisons jacket was more expensive but when I found out the price recently it had gone down to just £12 so with these items plus the Birthday presents everything amounts to around £100.

I was advised by the new Manager of Suffolk Ward (KS) that everything was in Pal’s hands so I decided to visit the office of Pals who said they had received absolutely nothing in terms of paperwork. I was advised to call at the ward which I did. I was told the Manager was coming first of all. I stood there patiently for a very long time and then was told again that the Manager was coming. I waited again for a very long time then a male nurse came to the door and offered to take the receipts off me but I then said that not only did I wish to give the receipts but I also wanted to discuss the Discharge Notice Elizabeth has just passed to me. It must have been about an hour I patiently waited in total and this male nurse disappeared but it was obvious that no-one was going to come out. I then called at reception and asked to speak to someone more senior. I was told to wait in the foyer which I did and all the time Elizabeth was phoning to see where I was as she was waiting for me at her flat. Then I noticed the person coming towards me was someone who is described in her previous response letter to Elizabeth’s complaint as “Covering for Suffolk Team Manager” JA. I had previously had contact with JA but was unsure of her title. Anyway, JA’s response was typical in terms of being defensive when challenged of anything wrong and I was not impressed with her response to Elizabeth’s complaint as I had nothing to do with this. In my opinion it takes guts for a patient to voice their concerns which I will outline in this blog. When I complained to JA that £100 of items went missing she was unsympathetic stating that it is a patient’s responsibility to look after their possessions on the ward. I responded that this was highly unsatisfactory since when things had gone missing on other wards such as Huntercombe and Cygnet, items had been reimbursed so I did not see why Suffolk Ward should viewed as a special case. She repeated it was a patient’s responsibility to look after their possessions. I said “easier said than done” when a patient such as Elizabeth was drugged to the hilt like a zombie and had found patients entering her room late at night on more than one occasion. I also questioned as to what Elizabeth was doing on their MH acute ward as she had autism to which JA responded that none of the patients on Suffolk Ward had anything other than a mental health diagnosis to which I said “rubbish” and showed her the 24 Hour Discharge Notification with ICD10 codes purely on physical health only. I also pointed out that Mencap/NAS and Access would not have got involved had I not been able to produce substantial evidence from the very beginning and referred to substantial divide in opinion by other professionals. She pointed out that the ICD10 code was for mental illness ie Elizabeth is said to have paranoid schizophrenia for which the team have refused to budge, however I have looked up ICD10 and this is what I have found:

ICD-10

ICD-10 is the 10th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD), a medical classification list by the World Health Organization (WHO). It contains codes for diseases, signs and symptoms, abnormal findings, complaints, social circumstances, and external causes of injury or diseases. Work on ICD-10 began in 19…

This is the first time ever I have come across a list of physical health conditions such as:

Other abnormal findings on diagnostic imaging of central nervous system

Other and unspecified symptoms and signs involving cognitive functions and awareness

Pruritus unspecified.

I am not a doctor or nurse but this reads to me as though Elizabeth has suffered injury in the course of one year’s incarceration where she has been drugged to the hilt on drugs previously found to be allergic to by several doctors and the depot version of Risperidone administered now switched to max level of Clopixol depot for which it has been promised regular reductions and titration right down. The Community RC explained that a reduction of the max level of Clopixol would commence at the next due depot injection which Elizabeth says is due on Monday and the first reduction is 50mg but this sounds quite high to me. Previous attempts at reduction have been too steep/cold turkey and had failed but this was recorded as relapse of mental illness, whereas it was withdrawal syndrome. This time the community RC explained that care would need to be taken on the very low dosage and that this could cause delusions/hallucinations – all the symptoms said to be of mental disorder when in fact these are the side effects of withdrawal. He also said he would have to increase his visits to see Elizabeth but this alone might be triggering for her as even a phone call from the MH team affects Elizabeth’s mood and puts her on edge.

JA could not explain re the Discharge Notice and said she was not a medical professional but KS new manager of Suffolk Ward is a medical professional who did not wish to come out and see me.

Since being discharged from Suffolk Ward Elizabeth is looking better but her breathing is of great concern. Never before was she like this. I know something is wrong and I am not even a nurse/doctor.

Elizabeth has had a chest Xray which I took her to. She has a blood test coming up and eye appointment, all of which I have to take her to. She says she has blurred vision and balance problems, that she has chest pains and headaches. She can barely walk.

Today I decided to ring Elizabeth’s GP to ask for a Neurologist appointment. The GP said she had to justify this appointment so I told her that I had the discharge papers that highlighted what appeared to be physical health concerns under ICD10. I also said that last time Elizabeth saw a Neurologist the Neurologist suggested genetic tests for rare condition of Wilsons Disease and that nothing should be ruled out as it says in the files “Lets rule out anything organic” but now I want everything organic looked at properly including the MRI scan Elizabeth wanted in the first place. The GP did not understand about the Discharge Notice contents and said before any referral could be made to see a Neurologist she needed to find out more about the things listed as the tick boxing had to be done very carefully otherwise the request would be rejected.

Elizabeth telephoned frequently to see where I was and I was mainly stuck at Chase Farm Hospital waiting in vain.

I have the letter in response to Elizabeth’s complaint by JA in front of me. To summarise:

You reported that nobody has explained to you why you are sectioned as you do not believe you are mentally ill. JA responded listing Tribunal’s decision going back to 2008, mentioning CTO and section 136 and that everything was explained to her. “I am sorry you do not believe you have a mental illness but would like to assure you that the correct process have been followed. “I am sorry that you do not believe that Elizabeth has been misdiagnosed as otherwise the wonderful organisations of Mencap/NAS and Access otherwise would not have got involved and as for the recent discharge note it would appear that Elizabeth has suffered injury and would assure you that there was no mention of mental disorder whatsoever – the first time this has ever been seen.

You told us that we have informed you that we are sending you to another hospital and you do not know why and you think that we may be waiting for a bed: “The team has a conversation with you in January 2021 that they were considering longer term placement as part of your care plan ie Priory placement. I hope that following this meeting you now are up to date with any plans for ;you to move. Likewise thanks to NAS and Access thank God stopping another six month OOA placement at Priory. Yes, definitely Elizabeth was right as per the latest files. For instance beds in hospitals all over the country were being considered where seclusion was the option, hence Cygnet Godden Green (Requires improvement) now closed by CQC who agreed to take Elizabeth for 5 weeks.

St Andrews &Huntercombe – Full Cannot accommodate  
Cygnet Woking – full, Cygnet Brierly – full, Cygnet Beckton – declined and Cygnet Appletree  
Priory Nottingham – no seclusion  
Southern Hill PICU – no beds

In addition to all of these above, Priory Darlington, Priory Hemel Hempstead, Elysium locked Rehab Bromley Road, Elysium Thornford Park (2 months) St Pancreas Hospital Ruby Ward.

You stated that the office staff (Suffolk Ward) keep telling you to speak to Dr HM but she does not listen and does not give any information: “On Suffolk Ward we empower patients to have discussion with their consultant if the information they are asking for is not within the remit of the nurses. We encourage patients to speak for themselves during their meeting with the consultant or other ward doctors. Nurses prompt patients during this meting if they are having difficulties to express themselves or have forgotten the points they wanted to raise at their meetings. This is the reason the staff were encouraging you to speak to Dr HM. An example of such discussion is “you have got paranoid schizophrenia” “no I have autism”

You reported that you were taken to seclusion when during your admission about a year ago your bag was ripped off and the manager kicked you in the leg. “I am sorry but I have been unable to find any evidence in your record to suggest that this incident took place. However on 29 July 2020 you were reported to have lashed out at staff, kicking the ward manager in the groin and punching female staff repeatedly. ” I am sorry but what we have heard is that Elizabeth was chased around the ward by several nurses she had not seen before who got hold of her and got her in some kind of seclusion room to give the depot to which Elizabeth did lash out but there were no female members of staff present – all male and her bag got ripped off her shoulder in the process and she got kicked in the knee. She did not punch female staff repeatedly as what we heard was there were only male staff present.

You stated that your mother could not see you because of breach of social distancing on Xmas Day. Your mother reported there has been Covid 19 on the ward but no communication and wanted you to be treated fairly. Elizabeth’s mother’s blog describes the shocking experience on Xmas Day and how her car was surrounded by staff threatening to call Police which they did do despite the fact that permission had been given by the RC but the bed management overrode that decision and that was because it was proposed to move Elizabeth that day, due to the ward being changed to Amber category.

JA then talked about the CTR (which was cancelled 3X due to a completely independent and person of experience being appointed by NAS who were not happy at the lack of support for Elizabeth leading up to this meeting by advocacy, minutes of the CTR still awaited.

JA then explains re S17 that they were unable to grant this on the grounds of Covid 19 other than to attend urgent physical health appointments. This rule was explained to you and your mother. It certainly was not explained to me at the time but I found out.

You reported that you have not been treated fairly and we are trying to treat you for schizophrenia when you have autism. Your records show you have been receiving treatment for paranoid schizophrenia since 2008. You also have diagnosis of Asperger Syndrome since 2016. You are administered Clopixol 400mg depot injection (intramuscular) every 2 weeks as part of your treatment for schizophrenia. We would like to know the aspect to which you reported that we have not treated you fairly so that we can improve the care and support we provide you. Since you ask, you recognise the diagnosis of Asperger Syndrome was given since 2016 (in fact it was given in 2008 also) so how come the change to schizophrenia and where is the term “treatment resistance” meaning poor / non metaboliser. You only have to look at the treatment over the past year and see how many institutions were being considered out of area at huge expense by various nursing staff/night bed management. You only have to read the latest file records of which Elizabeth’s mother has acquired in which she herself was being labelled behind her back with a MH diagnosis by a junior doctor who has never met her. Then you only have to look at how the CTR was handled and cancelled three times with the Chair stating “the whole thing stinks”. Then take a look at the discharge to her flat – nothing apart from Crisis/Home Treatment Team phoning every other day and totally disabled. Elizabeth cannot get in and out of her small bath. She has no shower. So disabled now I am a full time carer, not able to work in a full time job right at this moment or in fact any job other than caring. Elizabeth has breathing difficulties like never before has to rest several times during the day and has no energy to do anything that is because she is on max levels of the drug Clopixol which the community RC is taking her off having been alerted to the fact Elizabeth’s mother has the Discharge Notice that states physical health concerns.

Finally JA goes on to say “I hope we have addressed your concerns. If you feel that there are any outstanding issues you can contact me on ………….”

I told JA what I thought of her letter today and will finalise my blog by replying to the above comments stating “no” and “yes” – there is the issue of £100 of Elizabeth’s missing possessions and then Elizabeth’s mother wants full clarification as to what exactly is meant on the Discharge Summary by “Abnormal findings on diagnostic imaging of central nervous system” – Please explain.

As NR, in a letter sent by courier to the Hospital Managers at Chase Farm Hospital Enfield I discharged Elizabeth from S3. This was due to expire on 1 June and I was expecting the usual ie., that dreaded call from the AMHP asking for my objection to S3, to then be barred and then dragged to court, or for Elizabeth to be placed on CTO, previously ineffective and used to bully and force her to engage with the community team or else be recalled to Chase Farm Hospital. Now the difference is Elizabeth is trapped by fortnightly depot injections and the team would know instantly if she refuses to take it. I never received that dreaded call but instead, a letter from the MHA Office stating Elizabeth is no longer subject to Section 3 as the Responsible Clinician Dr HM decided the section should be rescinded on 28 May 2021. So Elizabeth was told on the spur of the moment she was “free” to go but no discharge papers were given and so we were not quite sure what was going on.

The discharge papers have only just been received with an official discharge date of 5th June. As NR I was not given a copy other than through Elizabeth.

Under Principal Diagnosis (ICD10 Code) it is disturbing reading:

No mention of paranoid schizophrenia or autism (for which Elizabeth is awaiting a proper assessment). Instead the focus is on physical health.

“Other abnormal findings on diagnostic imaging of central nervous system

Other and unspecified symptoms andsigns involving cognitive functions and awareness

Pruritus, unspecified.”

Under specific risk and safeguarding it says N/A

Then there is a list of contacts in the Crisis Plan:

Mind Crisis Line

Saneline

The Maytree

NHS 111

North Mid Hospital

Barnet Hospital

Emergency Services

ENABLE COMPASS

IAPT

Anxiety UK

Samaritans

Elizabeth was discharged back to her flat under Enfield Crisis Resolution and Home Treatment Team service who phoned her every other day and visited only twice. Then care was transferred back to ECRHT, responsible for instigating court case after court case including CoP, RcJ – county court displacement of NR and even Section 42 meeting.

The only care currently in place is the fortnightly depot and her care coordinator visited recently to adminster the Clopixol at 400mg.

Elizabeth got completely worked up prior to the depot being administered and also when the Home Treatment Team phoned and wanted to visit. No doubt this was all very triggering for her.

Yesterday, a surprise visit from the Community RC, Dr IM – I was not advised other than through Elizabeth. He brought with him an AMHP well known to us as a family. They came yesterday afternoon- I wondered why Elizabeth appeared so stressed out. The community RC stated he was there because of her mother’s request. On reading the discharge files I had requested something be done about Elizabeth’s medication. Due to what appears to be too high a dosage, Elizabeth is just lying around with no energy, fit for nothing and has come out of hospital so disabled to the point she is no longer venturing out alone and is a shadow of her former self. She has balance problems, blurred vision, breathing difficulties particularly noticeable when walking and she has trouble swallowing/choking. He asked for input but was only interested in Elizabeth’s input. When I mentioned side effects this did not go down well and I was told he only wanted to hear from Elizabeth her comments.

Not sure if we were being recorded as the social worker (EJ) kept fiddling around with her phone in her handbag. The AMHP asked Elizabeth if she remembered her to which Elizabeth replied “no” and I replied “yes”. How can I ever forget The CoP and attempted DoLs to force her return to a care home where she had no food at the weekend ie Phoenix House Stepping Stones rated good by the CQC. This was also when the Clozapine was deprived for four days prior and in the first instance “Deprival of Medication Community Care”.

The community RC then announced his proposed titration of Clopixol down to nothing starting starting with 50mg which I am not sure is too high but I will check. It is only when Elizabeth has tried to stop taking the drugs too steeply there has been problems caused by this and not relapse of so called “illness” Now only physical conditions mentioned on the discharge notice so I can see.

It was questioned why Elizabeth was so quiet, glum and guarded but noone stopped to think why. “you wasn’t like this last time and how was you whilst in hospital in comparison?” Any kind of questioning Elizabeth absolutely hates. I told them that since coming home from hospital at least she was sleeping well but the problem is Elizabeth is highly sedated and sleeping during the day and constantly having to take a rest. This surely is not right.

I mentioned I had acquired the latest files of shocking content in which is stated “of high risk of mortality and choking”. Whenever Elizabeth gets stressed out she seems to have excess saliva which was evident during their visit.

In the past, reductions of medication have been refused but the RC stated he had reduced Risperidone down from 2mg to 1.5. I advised I had reduced it from 1.75 to 1.5 as Elizabeth could not cut a small tablet into four and neither could staff at her supported housing scheme Reservoir House. I also mentioned how Elizabeth should never have been prescribed this drug previously found to be allergic to that had lines put through countless drugs charts. The drug, Risperidone is subject to Class Action yet recommended by CQC’s SOAD as was Paliperidone, depot form in addition to plus drugging at max levels, except not recommended was the two antipsychotic IM injections given at Elysium. It is no wonder people with LD/autism die early – you only have to look at the files “Mews Score 2 /3” – that is serious and then look at the drugs prescribed against STOMP even above BNF level. I have all the proof of what goes on in these institutions.

It was also discussed that when the drug is reduced to very low level this is when care needed needs to be taken as this is when there is risk of “relapse” (withdrawal syndrome). I then commented to the effect of injury as per the comments on ICD10 diagnosis on physical health.

For safe reductions there are no facilities other than locked acute wards that are noisy and untherapeutic. When there is risk of “relapse” during drug reduction surely there should be the right kind of help given and in particular a facility that specialise in research in respect of drug withdrawals not an acute ward or PICU.

It was discussed about the CTR minutes and the fact that no minutes had been received by anyone. I have tried to chase these up as they are overdue.

After they left Elizabeth was visibly upset. She spoke of her life being ruined, not wanting to live and wanting to be free. She used the word “abuse” several times and that she wanted to be left alone by professionals but there is no chance of that now whilst she is on a depot and this is the only “care” in place right now.

In terms of risk – absolutely nothing is mentioned apart from N/A.

In terms of health and safety – no mention either but I would comment that since December’s lockdown Elizabeth had spent a great deal of time in her bedroom on the ward not venturing out. She was phoning me constantly asking me to bring things but I could not visit and she was not even allowed a fresh air break. She says she is amazed she is still even alive but comments that life is not worth living. I can see what she means by that and it is very hard to hear such comments. The situation of the lockdown led to her physical health being neglected. Tomorrow is the XRay appointment regarding her breathing and next week are more appointments re her eyes which are troubling Elizabeth. Totally dependant on me as her carer with no help in place these appointments fall on me in order to take her.

Worse still, Elizabeth has gained enormous weight from no exercise over so many months of incarceration and as a result, she can no longer get in and out of her bath and there is no shower so I have had to bring her back home for this purpose.

I have never seen Elizabeth come out of hospital quite so disabled and she appears to have agoraphobia and worse still breathing difficulty which is quite noticeable at times.

Elizabeth was suddenly discharged from Suffolk ward, Chase Farm Hospital Enfield last week. I was not sure in the absence of any paperwork whether she was properly discharged. I have requested the discharge papers several times but to no avail. I have still not received the minutes from the CTR meeting. I knew when Section 3 was due to expire so I arranged a courier to take my standard letter as NR to the MHA office at Chase Farm Hospital Enfield. I was expecting the worst – yet another court appearance through barring. It was nerve wracking waiting but no Barring Notice was issued on this occasion. I see Sections as being nothing more than punishment and this has a knock-on effect that is most devastating on everyone in the family. As Nearest Relative I have been taken to court so many times and treated like a criminal. CoP threw the case out in 2014. Elizabeth was found to have capacity to decide on where she wanted to live. In 2017 I was taken to RcJ for displacement by an AMHP who went back to the time Elizabeth suffered extensive abuse at a local supported housing scheme but I acted as Litigant in Person as I did not see her as being suitable as NR having read her file notes previously. Besides it is a conflict of interest that an AMHP working for LB Enfield should be even considered as the nearest relative. Previously I was taken to Bromley Court (court papers sent to my work email address) deluged with phone calls re agreement to S3. It was attempted to displace me with her father who in their opinion was of best interest Elizabeth was at Bethlem Nat Psychosis Unit and her Section 2 had come to an end. I did not realise back then that I could have taken Elizabeth away from them but since I have gained knowledge as to how corrupt things can be and how vulnerable people can be hauled into hospital – sectioned unlawfully and all they get is £1 compensation and treated like criminals. I have a cheque for when I challenged the first unlawful section for just £1 which I have had framed. Since then another unlawful section has come to light. Why should a vulnerable person be treated any differently to anyone else. The system is a disgrace and works against the weak and vulnerable and their families. A system not fit for purpose where tribunals are a complete ordeal for someone like my daughter who has been misdiagnosed and has autism/LD. Some Tribunals can be biased and even threats of imprisonment are voiced by some Judges. Imprisonment if I dared to talk about the tribunal and I feel like doing just that because after all this is public money.

So now Elizabeth has been discharged without any paperwork but It is all thanks to Mencap, NAS and Access – without them she would undoubtedly have been sent to the Priory for six months in yet another locked facility out of area which she did not wish to go to.

This is the advice I have just received (my comments in bold)

“Firstly, it appears that Elizabeth should be eligible for s.117 aftercare services, separate to any duties arising from the Care Act; (After-care services mean services which have the purposes of meeting a need arising from or related to the patient’s mental disorder and reducing the risk of a deterioration of the patient’s mental condition (and, accordingly, reducing the risk of the patient requiring admission to hospital again for treatment for mental disorder); What mental disorder? Elizabeth should be under different care – she has a neurological condition not a mental disorder and this is recorded going way back as “Anterior Region Medial temporal compromise. I am not even a Doctor to know this is not a mental disorder and I checked everything with Headways. What does affect Elizabeth’s condition is the team themselves as all they can talk about is medicating and of her next depot injection and she has a fear of needles plus the depot has been given roughly where the needle has broken. Prone restraint and all men giving the depot. It should be called “aftercare abuse” in my opinion. The depot does nothing for her and does not even work.

Secondly, you have a freestanding right to a Carers Assessment under the Care Act s.10 even if Elizabeth does not want to engage with a Care Act assessment. This could be a good way to begin discussions on what support options there are and certainly of recording the impact on you in the absence of formal support. It is said in Elysium’s files that I was offered a Care Act Assessment but refused it. In fact this was a MHA Assessment but luckily I obtained the files and found out back in 2014. Luckily I did not go in the circumstances.

Thirdly, even if Elizabeth does not want to engage with a Care Act assessment, there may still be a duty to do one:

s. 11 Refusal of assessment

(1) Where an adult refuses a needs assessment, the local authority concerned is not required to carry out the assessment (and section 9(1) does not apply in the adult’s case).

(2) But the local authority may not rely on subsection (1) (and so must carry out a needs assessment) if

(a) the adult lacks capacity to refuse the assessment and the authority is satisfied that carrying out the assessment would be in the adult’s best interests, or I do not like the word lacking capacity. From the files I have obtained it is obvious Elizabeth has FULL capacity and knows exactly what she wants. Best interest – this is some kind of joke to think that a best interest is a locked prison facility for a start.

(b) the adult is experiencing, or is at risk of, abuse or neglect. Elizabeth has said the abuse is from the Professionals forcing this kind of treatment on her that does not work.

(3) Where, having refused a needs assessment, an adult requests the assessment, section 9(1) applies in the adult’s case (and subsection (1) above does not).

(4) Where an adult has refused a needs assessment and the local authority concerned thinks that the adult’s needs or circumstances have changed, section 9(1) applies in the adult’s case (but subject to further refusal as mentioned in subsection (1) above).

(5) Where a carer refuses a carer’s assessment, the local authority concerned is not required to carry out the assessment (and section 10(1) does not apply in the carer’s case).

(6) Where, having refused a carer’s assessment, a carer requests the assessment, section 10(1) applies in the carer’s case (and subsection (5) above does not).

(7) Where a carer has refused a carer’s assessment and the local authority concerned thinks that the needs or circumstances of the carer or the adult needing care have change. At Elysium it was said I refused a Care Act Assessment when it was actually a MHA assessment! Never been offered a Care Act Assessment before.

Do you know whether a capacity assessment was done to assess Elizabeth’s capacity to make decisions about her care and support and/or where she lives? Many capacity assessments (in every case found to have capacity) have been carried out but it is disturbing when certain professionals turn to MDDUS when they do not wish to disclose the contents of the files in order to get the wording to respond to me on capacity. They were advised to say she had No Capacity so I then said that I had POA and that is where POA is useful. I have everything in writing so there is no excuse for the GP Surgery to decline under GDPR Rules.

I have spoken to Elizabeth and as you say she is presently reluctant to engage with a Care Act assessment. I have left it that I will speak to her again about this. However, as a first step, we have agreed that I will chase up the minutes of the Care Treatment Review and try to obtain a copy of her discharge plan. Such was Elizabeth’s distress she was up all night worrying about a visit from her Care Coordinator and no doubt it was triggering as she has not got over the last unlawful detention of around 5 days. Where is the warrant for this? I would like a copy for my records.

You are probably aware that the Mental Health Act Code of Practice, paragraph 33.13 says:

33.13 Before deciding to discharge or grant more than very short-term leave of absence to a patient or to place a patient onto a CTO, the responsible clinician should ensure that the patient’s needs for after-care have been fully assessed, discussed with the patient (and their carers, where appropriate) and addressed in their care plan. If the patient is being given leave for only a short period, a less comprehensive review may be sufficient, but the arrangements for the patient’s care should still be properly recorded. They have already seen that a CTO does not work. It is cruel and abusive to place my daughter on a CTO and I have a good mind to put the entire CTO papers for everyone to read from the last time as the Nearest Relative was documented incorrectly when in fact It was ME who was NR as I had taken back my role from the RcJ when I realised that I was in fact still the NR. The CTO papers were full of threats of recall and the contents were disgusting to read.

I have written to Dr M this morning for further information about the discharge plan and to ask whether capacity assessments have been completed.” There is no plan and most definitely capacity assessments SHOULD NOT BE CARRIED OUT BY PROFESSIONALS FROM THE TEAM AND NEITHER SHOULD AN AUTISM ASSESSMENT. THIS IS CONFLICT OF INTEREST.

All along Elizabeth has had FULL capacity and I would commend her from speaking up for herself at Elysium and Cygnet and saying she did not want to go to a locked rehab facility out of area for the fourth time. She missed her flat and her pigeons. Elizabeth adores animals and at Elysium asked to go to a care farm but this was ignored as the team had their own agenda and a CTR was originally refused until I produced substantial evidence to Mencap/NAS and Access on autism going right the way back to the very beginning in 2008.

Since Elizabeth has come out of hospital she has declined to such an extent that she relies on me to do everything. Without any support at all I ensure Elizabeth has food in, her bills paid, I go round in my car to collect her to bring her home as she has no shower and the bath is too small for her now. It is a struggle to get Elizabeth in and out of my car which is low down and the seat belt does not fit her. I ensure all her washing is done. I ensure the flat is tidy and clean, I try to encourage her to make her bed and do basic things but all too often nothing is done and this is not how she was when she first acquired the flat. Elizabeth relies on me to collect her – at least at home she can sit out in the garden and see her cat. Elizabeth adores the pigeons and birds she sees from her balcony windows. I have put netting up to ensure that the balcony is clean. Elizabeth has balance problems and clings to my arm whilst walking. We have no adaptions in the shower at home and I was trying to get all this in place. You would think that during the course of one year something could have been done about her flat and a shower put in but noone would deal with me at the GP surgery or council’s OT assessors because she had not been discharged from hospital. I will have to try this again now she is out of hospital and see the response. The autism assessment cannot be done immediately because there is a massive long waiting list. With the diagnosis in grave doubt and up in the air this means professionals can carry on with the distressing treatment of depot injections. I am determined that a better solution can be arrived at but cannot see that this can be achieved via a MH team in the community who do not have the experience of neurological conditions and I have advised Elizabeth all the time not to stop taking the drugs steeply but yet I understand her distress at the depot injection given every two weeks and if she was to refuse then what would the team do?

In the files it says “high risk of choking and mortality”. She was not like this going back to when first admitted but it is no wonder why when hospitals such as Elysium prescribe drugs at high levels ignoring STOMP and give face down restraint plus surely it is wrong to prescribe two antipsychotic drugs IM – these being Clopixol depot plus olanzapine resulting in Mews Score 2??? No wonder there are deaths in these institution as two IM antipsychotic drugs were not advised by the SOAD. Not one of these institutions has assessed her for autism properly and enormous amounts of money have been spent in one year that has made Elizabeth come out of the system more disabled than ever and totally reliant on me.

Despite all of the above I am still so happy that Elizabeth is not on a Section right now. I think they should offer her a reduction and slowly reduce this drug as it really does not work. The effect on Elizabeth is not good for her physical health.

Below is the latest response from the Commissioner from North Central London CCG Enfield in respect of Elizabeth’s request for a CQC inspector to attend. I would agree with her request as the CTR is due to take place on the 17th May and this had been cancelled three times now. As you can see from the response from SA (Pals) and BM Head Nurse that they are totally ignoring my daughter and that of her family and just look at the degrading treatment we have had following Xmas Day. Certain others within the Trust, ie CEO, Chief Nurse and Medical Director should have responded to the complaint especially in light of their serious allegations against me but they remain silent and protected. Now this matter is being referred to PHSO via my MP. Enfield is an area where I have lived all my life which is not a bad area in itself but unfortunately we have encountered extensive bullying to the extent of Deprival of Medication Community Care (Irwin Mitchell) and DoLs – CoP slated them. It has ruined our lives and we are not alone. This has meant we have had to review our entire lives because of such bullying. Certain professionals under the NHS give the NHS a bad name and this is sad when there are many good professionals within NHS who possess kindness and compassion towards vulnerable people but not in my area re our experience. We cannot see any end in sight – every year I am battling court action after court action whether it be a tribunal or against me personally. It has made me ill. I have been taken to CoP, RcJ and other courts and treated like a criminal because I have exposed serious concerns within my local area and the CTR which was originally refused despite overwhelming evidence of conflict in opinion of diagnosis is now set to take place on Monday. Finally, Elizabeth has been appointed a specialist advocate. This CTR is meant to hear Elizabeth’s views and opinions and treat her fairly. What is the point of a CTR when certain professionals stick by their decisions which will mean our lives will be turned upside down and we have encountered arrogance and unaccountability as seen in the response by the Head Nurse. When you get labelled a vexatious complainant for the second time, having failed the first time, this shows they have plenty to hide and cover up but I have acquired the very latest files of most shocking content. I will do a separate blog on all of this plus even a You Tube video channel featuring our progress with everything as there are about to be major changes in our life which have come about because of the fact our lives have been turned upside down. Frequently, Elizabeth is phoning me. She is waiting for me to take her off the ward for the six hrs I am allowed but, whilst professionals state she is of risk to me and lie in reports for court purposes, they will not give overnight leave, which shows how ridiculous everything is. I have written to the RC of Suffolk Ward requesting overnight leave but no-one has responded to my request as Elizabeth wishes to go back home to her flat. The professionals cannot be bothered and are passing the buck and responsibility for a new team to even decide on an autism full assessment when Elizabeth had been promised this would be the case and she had been referred to Bethlem but instead it is planned to send her to a MH institution to a locked facility ie Priory Hemel Hempstead against her wishes.

https://psychiatricabuseuk.com/2021/03/06/cetr-cancelled/

https://psychiatricabuseuk.com/2021/03/04/cetr/

https://psychiatricabuseuk.com/2021/02/12/elizabeths-birthday-3/

ward/https://psychiatricabuseuk.com/2020/12/25/degrading-xmas-day-treatment-on-by-bed-management-at-chase-farm-hospital-enfield-suffolk-ward/

https://psychiatricabuseuk.com/2020/10/14/vexatious-complainant-by-amanda-pithouse-chief-nurse-and-mehdi-veisi-medical-director-behmhtnhs/

Yours sincerely

Susan Bevis

———- Original Message ———-
From: “ROBSON, Jon (NHS NORTH CENTRAL LONDON CCG)” < To: susan Bevis <susanb25
Date: 14 May 2021 at 11:39
Subject: RE: CETR LB CQC INSPECTOR CTR – L R E Bevis

Hi Susan, I had an auto response advising they will be in contact within 5 days (from Monday)

I will phone them and chase the outcome.

Many thanks

Jon.

———- Original Message ———-
From: Feryal Clark MP <feryal.clark.mp@parliament.uk>
To: susanb25Date: 14 May 2021 at 09:31

Dear Mrs Bevis, 

I have now received a copy of the letter BM, Head of Nursing for Enfield Mental Health Services, sent to you following your recent meeting with him.  

I hope you will understand that whilst I am not a medical professional, I have intervened on your behalf on a number of occasions by contacting the relevant stakeholders involved in the care and treatment of your daughter Elizabeth. I have tried to ensure your voice is heard in the assessment of your daughter’s mental and physical health requirements. 

Whilst I acknowledge and appreciate that your views may not align with that of the social care and mental health services, I believe the attached letter is definitive in addressing your concerns.

This letter is written by medical professionals who care for Elizabeth in the medical institution Elizabeth is currently at. I trust this assessment has taken into consideration Elizabeth’s needs and views, and confirms Elizabeth is receiving the appropriate care and support.

With regards to your request for a referral to the Parliamentary and Health Service Ombudsman (PHSO), you will need to fill and sign the attached complaint form before I can sign it for you. My signature is the referral and, once I have signed the form, you are required to send the form to PHSO. 

I hope I have been able to clarify my position. Should you have any questions or require further assistance, please let me know. 

Yours sincerely, 

Feryal Clark
Member of Parliament for Enfield North 


Westminster Office
House of Commons
London
SW1A 0AA
Tel: 0207 219 6607

From: SA (BARNET, ENFIELD AND HARINGEY MENTAL HEALTH NHS TRUST)”
To: Susan Bevis <susanb25
Cc: BM (BARNET, ENFIELD AND HARINGEY MENTAL HEALTH NHS TRUST)” Date: 13 May 2021 at 15:08
Subject: Reference: 9409

Dear Ms Bevis

Please accept my sincere apologies for the length of time it has taken for me to get back to you.

Having reviewed your outstanding concerns with the original response sent to you by Mr BM, it has been concluded that we will be unable to provide any further investigation. 

This is due to having exhausted the information available to us which were used as evidence to provide you with our initial response. Another response from us would be repeating what has already been detailed in our last letter.

Once again I am sorry that you had cause to raise concerns about the care and treatment provided to you by the Trust and I appreciate that this is not the desired outcome.

As we are unable to offer any further response on your concerns around your outcome letter it is well within your right to approach the Parliamentary Health Service Ombudsman to take this further. They can be contacted via email at: phso.enquiries@ombudsman.org.uk and telephone on: 0345 015 4033 or by post, The Parliamentary and Health Service Ombudsman, Millbank Tower, Millbank, London SW1P 4QP. 

Thank you for your patience in this matter.

SA

Patient Experience Manager

T: 020 8702 4700

Barnet, Enfield and Haringey Mental Health NHS Trust, Ivy House, Chase Farm Hospital, EN2 8JL

Please note my working hours and days are 8am-6pm, Monday- Thursday

Barnet, Enfield and Haringey See the source image

Mental Health NHS Trust

A University Teaching Trust

Barnet Enfield and Haringey Mental Health Trust

P2 (Old Audiology)

Hospital

St Ann’s Road

London, N15 3TH

Tel:  020 8702 4700

Email beh tr.patient.experience@nhs.net

Our Ref: 9409

2048 Private & Confidential                        

Ms Susan Bevis

P2 (Old Audiology)

Sent via email to:

susanb25

28th April 2021

Dear Ms Bevis

Re: Local Resolution Meeting via Microsoft  Teams on 22nd March 2021.

It was good to meet with you and GH along with Mr SA, Patient Experience Manager to discuss your concerns. I am sorry that you have experienced a variety of difficulties regarding the service provided to your daughter by Barnet Enfield and Haringey (BEH) Mental Health Trust and for the delay in providing this letter.     Our experience has been appalling and upsetting to the point we are looking to move to another area.  We have been advised that no way would we be treated in this most ruthless manner in other locations by other professionals which is reassuring.

As mentioned at the meeting, I advised that I will be contacting your daughter’s medical team in order to respond to the concerns you have regarding her care and treatment and I am now able to respond below.  You have completely failed to respond satisfactorily to my complaint.  We are deeply concerned about the wellbeing, physical health and safety of my daughter which we feel is being neglected.  There seems to be lack of communication, lack of insight and understanding towards my daughter who is being treated as a MH patient and denied assessments.  There is discrimination and dismissal of what she feels is her condition which is confirmed throughout the files going back to the very beginning by lots of other doctors.

Autism Assessment

I have been advised by the medical team that they have considered Autism assessment but felt your daughter’s current treatment is appropriate.   I will be passing your comments on to Mencap and National Autistic Society as well as the British Institute of Human Rights.   My daughter’s treatment is far from appropriate.   I note you keep referring to “the medical team” when it is you have responsibility as Head of Nursing.

They reported that your daughter is doing really well and as a result a rehabilitation placement has been identified for her and she has been accepted.    I have not seen my daughter every single day but have received many distressing calls from her as she is trapped by your hospital because staff persist in writing report after report containing error and untruthful statements.  As Elizabeth has sensory issues she finds the noise on Suffolk ward unbearable.  She states she does not feel well physically and wants to come home and go back to her flat.   I requested a Level 3 OT sensory assessment to be carried out some time ago.  She sees her “care” on Suffolk ward as punishment.  Punishment for an incident where she called at her GP Surgery wanting an MRI scan which was refused and it is wrongly recorded she caused a lot of damage because when I called at the GP surgery to offer to pay for such damage I was told there was none by the manager so why are lies written in the medical files.   Why hasn’t the Level 3 OT assessment been done –  This shows you are not meeting my daughter’s needs.

I understand that she has not been transferred to the placement centre as you had insisted on a Care Treatment Review CVTR before the transfer takes place.  I Am also aware that there has been postponement of the CTR on three different occasions as you were unable to attend for various reasons?????   Please note that your daughter’s new team at the rehabilitation placement will also be able to consider an autism assessment if they feel it is needed.   Please kindly note that my daughter does not wish to go and that is the point of the CTR.

The environment of the acute ward/PICUS are not peaceful environment for my daughter to get well in.  She has been sent all over the place three times and this was discussed at the CTR which took place without Elizabeth and criticised highly.  What kind of treatment is this?  My daughter has been treated like dirt so have we as a family.  Please be advised the CTR was first of all refused by Commissioner then Mencap and NAS got involved.   The CTR was a shambles because it was not organised properly.  It had nothing to do with ME not being able to attend as I was available on every occasion to attend.  The reason the CTR was cancelled three times, as explained at the meeting to you and S,  was because there was no Advocate to prepare my daughter for this meeting beforehand where for once she will be heard and listened to fairly.   In fact, the Chair of the most recent CTR said that the whole thing stunk and he called a halt to the meeting and this was adjourned until 17th May.

It has already been attempted to send Elizabeth to a locked rehab by Elysium in London.  Please explain???  

It was also attempted to send my daughter away to Priory Darlington on Xmas Day as a bed had been found hadn’t it according to my solicitor?  Please see below and these referrals were made by nursing staff/night bed management for which I have their names and every detail in the files. 

St Andrews & Huntercombe – Full Cannot accommodate  
Cygnet Woking – full, Cygnet Brierly – full, Cygnet Beckton – declined Cygnet Appletree – declined    
Priory Nottingham – no seclusion Priory Darlington St Ann’s Sunflower Ward  
Southern Hill PICU – no beds Elysium Bromley Road Locked Rehab AND NOW PRIORY HEMEL HEMPSTEAD IS PLANNED

Suffolk ward is in breach of the Equality Act and Human Rights Act.  At £3000+ a week the environment is unsuitable, unbearably noisy and not providing correct therapy that my daughter needs as, according to Elysium, Elizabeth has gone into detail during her admission about the serious abuse at Moti Villa which was non consensual.  She also mentioned  the very first incident of abuse she had suffered.   Therefore, her diagnosis that Dr Bob Johnson stated along with Dr Mukherjee of Chase Farm Hospital and private MH professionals is absolutely correct re complex PTSD.

Hormonal Imbalance

Whilst I appreciate your concerns regarding Hormonal imbalance, recent blood test has not identified any hormonal imbalance.  Nonetheless the team will continue to do regular tests regarding this.

You cannot possibly appreciate.  Elizabeth appears to be going through early menopause.  She is stated  as having a hormone imbalance by Cygnet which is mentioned in Cygnet’s most recent files.  At a previous Tribunal it was suggested a hormone clinic referral.  Please therefore make this referral to a hormone clinic.    You are dismissing the fact I have Endocrinology Reports stating PCOS and insulin resistance.  E;lizabeth scored Mews Score 2 and has excessive saliva and is reported as being high risk of mortality and choking.  I want confirmation that in your records do not state DNR.  Please confirm.  I am so concerned at your dismissiveness of my daughter’s physical health that I am referring matters to external sources as I feel my daughter’s physical health is being severely neglected and her life is at risk.

MRI Scan

I have been informed that your daughter had an MRI in the past and nothing was identified as being a problem. I have again asked for this to be investigated and the medical team do not feel she currently requires an MRI scan. I am sorry that this might not be your desired outcome.

In fact the MRI scan was cancelled due to my daughter being moved from Cygnet back to Suffolk Ward.  This was scheduled for 3rd July 2020 so please therefore arrange for another MRI scan to be carried out without further delay, bearing in mind I have file records that state she has a tumour that needs regular monitoring.  

PTSD 

Upon enquiring from the medical team regarding complex PTSD I have uncovered that the team is of the opinion that your daughter does not have complex PTSD.   

Your comments show lack of insight due by not reading file records as not only is there an extensive report by Dr Bob Johnson on complex PTSD but also Clinical Psychologist Dr Mukerjee identified complex PTSD as well as LD plus private MH professionals.

Direct payments

As your daughter is being discharged to a Rehabilitation placement, direct payments for activities will not be required.

Please note:  It is not my daughter’s wish to go to a locked rehabilitation placement. It is her sister’s wedding this year for which she has been asked to be bridesmaid.  Why are you forcing her to go to another locked ward against her wishes?   How many locked wards must she be sent to when absolutely nothing provided has worked.  Such a locked ward was Cambian in Wales and Elizabeth did not benefit from this at all.    It is her wish to go back to her flat with care and support in place. In Elysium’s files it is stated that she wants to go to a care farm and to be nearer to the rest of the family.  There are plenty of witnesses and written evidence documented in recent files by Elysium.   If Elizabeth is ignored due to CMRHT providing no care in place in the community, then Chase Farm Hospital are in breach of the Human Rights Act and Equality Act.   She is unhappy at Chase Farm Hospital and wishes to be discharged back home and I have both written and verbal evidence to prove it.   Both Chase Farm Hospital and CMHRT are in breach of Art 3 and Art 8 of the HRA in respect of the most degrading treatment we have ever encountered on Xmas Day when it was planned, without any communication to move her to Priory, Darlington as a bed had been found on Xmas Eve, according to my solicitor.    Whilst I was accused of non- social distancing on Xmas Day please provide evidence by way of CCTV camera.  I would point out that certain staff have not worn masks yet this is an Amber categorised ward and therefore in breach of Government guidelines.

Side effects

I have been informed by the team that they discuss side effects weekly and that your daughter has not expressed any concerns about the side effects of the medications that she is on. The team will continue to engage with her about side effects on a weekly basis and will also continue to encourage her to discuss with them should she have any concerns arising in future.

Elizabeth is most certainly suffering side effects from the current medication and constant skin irritation.   She has excessive saliva, is documented as being at risk of choking and high risk of mortality and I have all of this evidence in writing by way of recent file reports (Mews Score 2).   As for Elizabeth’s own complaint answered on behalf of KS by J. I have sent this to the Rt Hon Feryal Clark MP who is chasing up the outcome of my complaint addressed to CEO Jinjer Kandola from one year ago and still outstanding and, unfortunately, bearing in mind the most recent files, there are even further concerns that need addressing.   

Finally, regarding the lost items on Suffolk Ward, M KSK, Ward Manager contacted your daughter on the ward and your daughter confirmed that the lost items are a pair of thermal clothing top and bottom. Ms K will have a further look into this and if not found, she will consider the options for resolution.

The lost items that went missing back in February this year amount to £35 roughly, including my brand new tuppaware Birthday cake container.   I would appreciate reimbursement in the circumstances.  Nothing has been done about it to date.

I would like to hope that moving forward, your experience from using our services will improve and again.

Whilst your services are rated good by the CQC my severe concerns for my daughter’s health and wellbeing under Chase Farm Hospital are very justified and I have acquired all of the most recent files. 

 I would like to sincerely thank you for bringing these matters to my attention. However, I have highlighted a culture of bullying and unaccountability and arrogance within Chase Farm Hospital and under Barnet Enfield and Haringey MH Trust that seems to go right up to senior level within the Trust involving the Medical Director and Chief Nurse.  You have not even mentioned the letters I showed you where I have been labelled as a vexatious complainant and this is not the first time so please explain why you have chosen to ignore one of the main points of my complaint.   

Therefore, I am not satisfied with your response one bit especially when my daughter’s life is at risk because her physical health is being neglected and ignored I am going to ensure that my complaint is looked at independently as your response is reflective of many other similar dismissive responses excusing and dismissing matters where there are grave health and safety concerns which need to be drawn to the attention of external sources, especially when my daughter’s life has/is being put at risk.  Therefore, since you are the Head of Nursing I want my daughter to have all the necessary referrals to an Endocrinologist and Neurologist without further delay and as you are the Head of Nursing, you have sole responsibility if anything happens to my daughter because you are relying solely on the advice of a medical team who are in breach of health and safety and are neglecting serious concerns regarding my daughter’s physical health and you have clearly not done your own research into such matters.

Yours sincerely

BM

Enfield Mental Health Division Head of Nursing

Amended by Susan Bevis (Mother, Nearest Relative, POA and McKenzie Friend)

———- Original Message ———-
From: “ROBSON, Jon (NHS NORTH CENTRAL LONDON CCG)” < To: susan Bevis <susanb25
Date: 14 May 2021 at 11:39
Subject: RE: CETR LB CQC INSPECTOR CTR – L R E Bevis

Hi Susan, I had an auto response advising they will be in contact within 5 days (from Monday)

I will phone them and chase the outcome.

Many thanks

Jon.

———- Original Message ———-
From: Feryal Clark MP <feryal.clark.mp@parliament.uk>
To: susanb25Date: 14 May 2021 at 09:31

Dear Mrs Bevis, 

I have now received a copy of the letter BM, Head of Nursing for Enfield Mental Health Services, sent to you following your recent meeting with him.  

I hope you will understand that whilst I am not a medical professional, I have intervened on your behalf on a number of occasions by contacting the relevant stakeholders involved in the care and treatment of your daughter Elizabeth. I have tried to ensure your voice is heard in the assessment of your daughter’s mental and physical health requirements. 

Whilst I acknowledge and appreciate that your views may not align with that of the social care and mental health services, I believe the attached letter is definitive in addressing your concerns.

This letter is written by medical professionals who care for Elizabeth in the medical institution Elizabeth is currently at. I trust this assessment has taken into consideration Elizabeth’s needs and views, and confirms Elizabeth is receiving the appropriate care and support.

With regards to your request for a referral to the Parliamentary and Health Service Ombudsman (PHSO), you will need to fill and sign the attached complaint form before I can sign it for you. My signature is the referral and, once I have signed the form, you are required to send the form to PHSO. 

I hope I have been able to clarify my position. Should you have any questions or require further assistance, please let me know. 

Yours sincerely, 

Feryal Clark
Member of Parliament for Enfield North 


Westminster Office
House of Commons
London
SW1A 0AA
Tel: 0207 219 6607

From: SA (BARNET, ENFIELD AND HARINGEY MENTAL HEALTH NHS TRUST)”
To: Susan Bevis <susanb25
Cc: BM (BARNET, ENFIELD AND HARINGEY MENTAL HEALTH NHS TRUST)” Date: 13 May 2021 at 15:08
Subject: Reference: 9409

Dear Ms Bevis

Please accept my sincere apologies for the length of time it has taken for me to get back to you.

Having reviewed your outstanding concerns with the original response sent to you by Mr BM, it has been concluded that we will be unable to provide any further investigation. 

This is due to having exhausted the information available to us which were used as evidence to provide you with our initial response. Another response from us would be repeating what has already been detailed in our last letter.

Once again I am sorry that you had cause to raise concerns about the care and treatment provided to you by the Trust and I appreciate that this is not the desired outcome.

As we are unable to offer any further response on your concerns around your outcome letter it is well within your right to approach the Parliamentary Health Service Ombudsman to take this further. They can be contacted via email at: phso.enquiries@ombudsman.org.uk and telephone on: 0345 015 4033 or by post, The Parliamentary and Health Service Ombudsman, Millbank Tower, Millbank, London SW1P 4QP. 

Thank you for your patience in this matter.

SA

Patient Experience Manager

T: 020 8702 4700

Barnet, Enfield and Haringey Mental Health NHS Trust, Ivy House, Chase Farm Hospital, EN2 8JL

Please note my working hours and days are 8am-6pm, Monday- Thursday

Barnet, Enfield and Haringey See the source image

Mental Health NHS Trust

A University Teaching Trust

Barnet Enfield and Haringey Mental Health Trust

P2 (Old Audiology)

Hospital

St Ann’s Road

London, N15 3TH

Tel:  020 8702 4700

Email beh tr.patient.experience@nhs.net

Our Ref: 9409

2048 Private & Confidential                        

Ms Susan Bevis

P2 (Old Audiology)

Sent via email to:

susanb25

28th April 2021

Dear Ms Bevis

Re: Local Resolution Meeting via Microsoft  Teams on 22nd March 2021.

It was good to meet with you and GH along with Mr SA, Patient Experience Manager to discuss your concerns. I am sorry that you have experienced a variety of difficulties regarding the service provided to your daughter by Barnet Enfield and Haringey (BEH) Mental Health Trust and for the delay in providing this letter.     Our experience has been appalling and upsetting to the point we are looking to move to another area.  We have been advised that no way would we be treated in this most ruthless manner in other locations by other professionals which is reassuring.

As mentioned at the meeting, I advised that I will be contacting your daughter’s medical team in order to respond to the concerns you have regarding her care and treatment and I am now able to respond below.  You have completely failed to respond satisfactorily to my complaint.  We are deeply concerned about the wellbeing, physical health and safety of my daughter which we feel is being neglected.  There seems to be lack of communication, lack of insight and understanding towards my daughter who is being treated as a MH patient and denied assessments.  There is discrimination and dismissal of what she feels is her condition which is confirmed throughout the files going back to the very beginning by lots of other doctors.

Autism Assessment

I have been advised by the medical team that they have considered Autism assessment but felt your daughter’s current treatment is appropriate.   I will be passing your comments on to Mencap and National Autistic Society as well as the British Institute of Human Rights.   My daughter’s treatment is far from appropriate.   I note you keep referring to “the medical team” when it is you have responsibility as Head of Nursing.

They reported that your daughter is doing really well and as a result a rehabilitation placement has been identified for her and she has been accepted.    I have not seen my daughter every single day but have received many distressing calls from her as she is trapped by your hospital because staff persist in writing report after report containing error and untruthful statements.  As Elizabeth has sensory issues she finds the noise on Suffolk ward unbearable.  She states she does not feel well physically and wants to come home and go back to her flat.   I requested a Level 3 OT sensory assessment to be carried out some time ago.  She sees her “care” on Suffolk ward as punishment.  Punishment for an incident where she called at her GP Surgery wanting an MRI scan which was refused and it is wrongly recorded she caused a lot of damage because when I called at the GP surgery to offer to pay for such damage I was told there was none by the manager so why are lies written in the medical files.   Why hasn’t the Level 3 OT assessment been done –  This shows you are not meeting my daughter’s needs.

I understand that she has not been transferred to the placement centre as you had insisted on a Care Treatment Review CVTR before the transfer takes place.  I Am also aware that there has been postponement of the CTR on three different occasions as you were unable to attend for various reasons?????   Please note that your daughter’s new team at the rehabilitation placement will also be able to consider an autism assessment if they feel it is needed.   Please kindly note that my daughter does not wish to go and that is the point of the CTR.

The environment of the acute ward/PICUS are not peaceful environment for my daughter to get well in.  She has been sent all over the place three times and this was discussed at the CTR which took place without Elizabeth and criticised highly.  What kind of treatment is this?  My daughter has been treated like dirt so have we as a family.  Please be advised the CTR was first of all refused by Commissioner then Mencap and NAS got involved.   The CTR was a shambles because it was not organised properly.  It had nothing to do with ME not being able to attend as I was available on every occasion to attend.  The reason the CTR was cancelled three times, as explained at the meeting to you and S,  was because there was no Advocate to prepare my daughter for this meeting beforehand where for once she will be heard and listened to fairly.   In fact, the Chair of the most recent CTR said that the whole thing stunk and he called a halt to the meeting and this was adjourned until 17th May.

It has already been attempted to send Elizabeth to a locked rehab by Elysium in London.  Please explain???  

It was also attempted to send my daughter away to Priory Darlington on Xmas Day as a bed had been found hadn’t it according to my solicitor?  Please see below and these referrals were made by nursing staff/night bed management for which I have their names and every detail in the files. 

St Andrews & Huntercombe – Full Cannot accommodate  
Cygnet Woking – full, Cygnet Brierly – full, Cygnet Beckton – declined Cygnet Appletree – declined    
Priory Nottingham – no seclusion Priory Darlington St Ann’s Sunflower Ward  
Southern Hill PICU – no beds Elysium Bromley Road Locked Rehab AND NOW PRIORY HEMEL HEMPSTEAD IS PLANNED

Suffolk ward is in breach of the Equality Act and Human Rights Act.  At £3000+ a week the environment is unsuitable, unbearably noisy and not providing correct therapy that my daughter needs as, according to Elysium, Elizabeth has gone into detail during her admission about the serious abuse at Moti Villa which was non consensual.  She also mentioned  the very first incident of abuse she had suffered.   Therefore, her diagnosis that Dr Bob Johnson stated along with Dr Mukherjee of Chase Farm Hospital and private MH professionals is absolutely correct re complex PTSD.

Hormonal Imbalance

Whilst I appreciate your concerns regarding Hormonal imbalance, recent blood test has not identified any hormonal imbalance.  Nonetheless the team will continue to do regular tests regarding this.

You cannot possibly appreciate.  Elizabeth appears to be going through early menopause.  She is stated  as having a hormone imbalance by Cygnet which is mentioned in Cygnet’s most recent files.  At a previous Tribunal it was suggested a hormone clinic referral.  Please therefore make this referral to a hormone clinic.    You are dismissing the fact I have Endocrinology Reports stating PCOS and insulin resistance.  E;lizabeth scored Mews Score 2 and has excessive saliva and is reported as being high risk of mortality and choking.  I want confirmation that in your records do not state DNR.  Please confirm.  I am so concerned at your dismissiveness of my daughter’s physical health that I am referring matters to external sources as I feel my daughter’s physical health is being severely neglected and her life is at risk.

MRI Scan

I have been informed that your daughter had an MRI in the past and nothing was identified as being a problem. I have again asked for this to be investigated and the medical team do not feel she currently requires an MRI scan. I am sorry that this might not be your desired outcome.

In fact the MRI scan was cancelled due to my daughter being moved from Cygnet back to Suffolk Ward.  This was scheduled for 3rd July 2020 so please therefore arrange for another MRI scan to be carried out without further delay, bearing in mind I have file records that state she has a tumour that needs regular monitoring.  

PTSD 

Upon enquiring from the medical team regarding complex PTSD I have uncovered that the team is of the opinion that your daughter does not have complex PTSD.   

Your comments show lack of insight due by not reading file records as not only is there an extensive report by Dr Bob Johnson on complex PTSD but also Clinical Psychologist Dr Mukerjee identified complex PTSD as well as LD plus private MH professionals.

Direct payments

As your daughter is being discharged to a Rehabilitation placement, direct payments for activities will not be required.

Please note:  It is not my daughter’s wish to go to a locked rehabilitation placement. It is her sister’s wedding this year for which she has been asked to be bridesmaid.  Why are you forcing her to go to another locked ward against her wishes?   How many locked wards must she be sent to when absolutely nothing provided has worked.  Such a locked ward was Cambian in Wales and Elizabeth did not benefit from this at all.    It is her wish to go back to her flat with care and support in place. In Elysium’s files it is stated that she wants to go to a care farm and to be nearer to the rest of the family.  There are plenty of witnesses and written evidence documented in recent files by Elysium.   If Elizabeth is ignored due to CMRHT providing no care in place in the community, then Chase Farm Hospital are in breach of the Human Rights Act and Equality Act.   She is unhappy at Chase Farm Hospital and wishes to be discharged back home and I have both written and verbal evidence to prove it.   Both Chase Farm Hospital and CMHRT are in breach of Art 3 and Art 8 of the HRA in respect of the most degrading treatment we have ever encountered on Xmas Day when it was planned, without any communication to move her to Priory, Darlington as a bed had been found on Xmas Eve, according to my solicitor.    Whilst I was accused of non- social distancing on Xmas Day please provide evidence by way of CCTV camera.  I would point out that certain staff have not worn masks yet this is an Amber categorised ward and therefore in breach of Government guidelines.

Side effects

I have been informed by the team that they discuss side effects weekly and that your daughter has not expressed any concerns about the side effects of the medications that she is on. The team will continue to engage with her about side effects on a weekly basis and will also continue to encourage her to discuss with them should she have any concerns arising in future.

Elizabeth is most certainly suffering side effects from the current medication and constant skin irritation.   She has excessive saliva, is documented as being at risk of choking and high risk of mortality and I have all of this evidence in writing by way of recent file reports (Mews Score 2).   As for Elizabeth’s own complaint answered on behalf of KS by J. I have sent this to the Rt Hon Feryal Clark MP who is chasing up the outcome of my complaint addressed to CEO Jinjer Kandola from one year ago and still outstanding and, unfortunately, bearing in mind the most recent files, there are even further concerns that need addressing.   

Finally, regarding the lost items on Suffolk Ward, M KSK, Ward Manager contacted your daughter on the ward and your daughter confirmed that the lost items are a pair of thermal clothing top and bottom. Ms K will have a further look into this and if not found, she will consider the options for resolution.

The lost items that went missing back in February this year amount to £35 roughly, including my brand new tuppaware Birthday cake container.   I would appreciate reimbursement in the circumstances.  Nothing has been done about it to date.

I would like to hope that moving forward, your experience from using our services will improve and again.

Whilst your services are rated good by the CQC my severe concerns for my daughter’s health and wellbeing under Chase Farm Hospital are very justified and I have acquired all of the most recent files. 

 I would like to sincerely thank you for bringing these matters to my attention. However, I have highlighted a culture of bullying and unaccountability and arrogance within Chase Farm Hospital and under Barnet Enfield and Haringey MH Trust that seems to go right up to senior level within the Trust involving the Medical Director and Chief Nurse.  You have not even mentioned the letters I showed you where I have been labelled as a vexatious complainant and this is not the first time so please explain why you have chosen to ignore one of the main points of my complaint.   

Therefore, I am not satisfied with your response one bit especially when my daughter’s life is at risk because her physical health is being neglected and ignored I am going to ensure that my complaint is looked at independently as your response is reflective of many other similar dismissive responses excusing and dismissing matters where there are grave health and safety concerns which need to be drawn to the attention of external sources, especially when my daughter’s life has/is being put at risk.  Therefore, since you are the Head of Nursing I want my daughter to have all the necessary referrals to an Endocrinologist and Neurologist without further delay and as you are the Head of Nursing, you have sole responsibility if anything happens to my daughter because you are relying solely on the advice of a medical team who are in breach of health and safety and are neglecting serious concerns regarding my daughter’s physical health and you have clearly not done your own research into such matters.

Yours sincerely

BM

Enfield Mental Health Division Head of Nursing

Amended by Susan Bevis (Mother, Nearest Relative, POA and McKenzie Friend)

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