THE BOTTOM OF THE TRUTH ABOUT ELIZABETH’S MISDIAGNOSIS

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.

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