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Monthly Archives: July 2021

“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.

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