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.