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.
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
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).
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.
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.