Due to the Cornavirus crisis Elizabeth was discharged from Section 3 by Chase Farm Hospital Enfield. She had ended up on section 3 through no care provision in the community since July 2019. She withdrew “cold turkey” from “medication” that was giving her terrible side effects and , as seen before, too steep a withdrawal led to withdrawal syndrome.
I was initially going round to help her within her in the flat with cooking etc and taking her out for drives plus assisting with shopping. I took her to an emergency chiropody appointment but, once again, no support locally.
With nothing to do in the community what with social distancing/isolation Elizabeth was back in the same situation as she was previously.
Now she is in a worse position. I could see her going downhill because of the steep withdrawal. With no doctors wishing to help in terms of slow, gradual withdrawals for convenience sake vulnerable people like Elizabeth are kept on these drugs long term. This is done with disregard to Manufacturer’s instructions of up to 6 weeks and has resulted in injury to physical health.
I have been challenging the diagnosis for many years now as there are so many different diagnoses in the files and would dispute Schizophrenia. The term “treatment resistant” (poor/non metaboliser) has been dropped since the Bethlem (Bedlam) where Elizabeth was prescribed 2 x bnf levels of drugs.
It has been like a brick in the wall trying to tell certain Doctors that there are underlying physical health conditions clearly recorded in the files as follows:
Anterior Region Medial Temporal Compromise – 2009 is a brain injury. This is in a report from UCL.
Headway stated this was the “wrong kind” of brain injury but what it boils down to is funding. Their funding is through North Central London CCG and they provide brain injury/trauma services for Enfield so I told them a brain injury is a brain injury and NOT a psychiatric illness and was discovered way back. I astonished that I as just a mother have to point out these facts to professionals.
Having come off the drugs cold turkey, Elizabeth was suffering from chronic pain, no doubt as a result of having been on these drugs for so many years. She did not feel at all well and being isolated without care and support she started to phone Police again who she regarded as “friends” then Ambulances were called and Elizabeth did not want or need an ambulance. Eventually the care coordinator started to visit her home but just visiting was not enough as there was no structure in care. If Elizabeth was in a place like Camphill Community Trust that offered activities then she would not be back to square one. Elizabeth would be better placed in one of the Camphill Community Trust’s projects or a care farm and this would be a much nicer environment than a PICU ward and could benefit all the patients as Elizabeth loves animals. There would be no need to drug her if she was in the right environment. Whilst the flat is the best accommodation she has ever had without any support whatsoever this is not good. The accommodation provided under supported living and housing in Enfield has been awful.
I spoke to Elizabeth today currently on Ruby Ward, St Pancreas Hospital. She has got her phone back after being it without for about a week whilst held in seclusion from around 12 May to 16 May in a Section 136 suite at Chase Farm Hospital which is dreadful. I sat in the foyer of Chase Farm waiting for news but was not allowed any contact then after she had been moved without the chance of even saying goodbye, the phone was left behind in the safe on Dorset Ward so I had to travel all the way up to St Pancreas Hospital. The nearest station was closed and so I had to get a bus part of the way. I was not allowed to enter the building neither I am not allowed to visit Elizabeth so I just left a bag of food and clothing and handed her phone to the support worker. Elizabeth has not been tested for Covid 19 yet as normally patients are kept in isolation whilst results are sent back between 24 – 48 hrs.
At least we can get through to her on the phone now but from the phone call I received today, Elizabeth does not sound too good and sounded very drugged up and her voice was slurred. She is apparently on Clonazepam again.
One reassuring thing is that a former patient has said good things about this hospital that there is far more going on than locally and I think I have heard good reports about the RC Dr Sarkar from a friend but I will check later to make sure this is the same Dr Sarkar. I was told he reads all his emails which is a good thing as I have sent lots of attachments including the P450 liver enzyme test results of NON METABOLISER.
I will probably go and visit later on in the week with some more things but I am concerned that she should not be on the clonazepam for too long and that she needs to be referred to the Psychodynamic Psychotherapy Department that I spotted on my way out of hospital premises.
Dr R D Laing’s friend/former colleague told me: “I was once asked at Kings College London what drugs I used when treating patients with psychosis. When I said that as a psychoanalyst I did not use drugs they were shocked. I was shocked that they were shocked”. I have sent these important comments on to Dr Sarkar. Now I have spotted the kind of care onsite, I hope that Elizabeth will be given the opportunity of a visit from a psychodynamic psychotherapist. I have informed Dr Sarkar that Psychotherapy helped Elizabeth enormously in Scotland and Australia. Therefore she needs to be on next to nothing of drugs and on the day of such visit, must not be given y Clonazepam at all.
I have also told Dr Sarkar that in light of Anterior Region Medial Temporal Compromise an MRI Scan needs to be done. Unfortunately Carlton House Surgery wrongly said no scans were taking place right now so I have seen this in their text message. Well I have looked into this – that is not true at all, as I was looking to pay for the scan. With a brain injury how can this be treated with any anti-psychotic drugs and I do not wish for Elizabeth to suffer further injury when I have proven that in Australia and Scotland psychotherapy worked and EMDR should also be tried. It seems to be that funding is the big issue but in my opinion enormous money has been wasted by provision of wrong care and treatment so now I would like to see the right care and treatment provided, as if this was provided in the first place Elizabeth would not be in the current situation.
What is letting so many vulnerable people down is total lack of care and support in the community which leads to them ending up back on the acute wards which could not be a worse place for them in my opinion as drugs given which are NO CURE.
The answer is to send such patients to nice quiet peaceful natural environments in the countryside and there needs to be more centres like Camphill Community Trust or Care Farms. These are the right environments for Elizabeth to get well and I have proven this already @Rightful Lives “My Wonderful Care” by Elizabeth.
Message for the RC Dr Sarkar and Team:
- Elizabeth needs an MRI scan and special emphasis on the pituitary glands and candida/parasites
- An Endocrinology examination follow up by a specialist which I will detail in my next email.
- Referral to the Professor – an expert on PTSD in Lincoln.
- A referral to Brain Injury Specialists and provision of the specialised trained support workers needed in the community
- A referral to the Psychodynamic Psychotherapist on site and to try EMDR
- I would point out that Hypnotherapy was more effective than the drugs and if any medication should be given it should be natural medication – If Elizabeth is suffering from chronic pain then she needs to be referred to this clinic in Manchester. I can take her there myself.