Friday 27 June 2014

A Service User Shares Their Experiences

I read in the Schizophrenia Commission about them including pharmacists in the treatment of patients, which I think is long overdue.

We have everybody else in a Ward round- surely the pharmacist should be included!

My own hospitalisation experience dates back to, initially, 1983 and most recent in 2001.
I think I am a recovered schizophrenic!

I can really sympathise with the carer who feels her son was nearly killed by Clozapine,
and also with all the side effects of drugs- the dribbling, tardive dyskinesia, etc.

I get restless feet all the time. I get too much spit in my mouth. I move my jaw, sort of clicking it, an involuntary movement.

Monday 23 June 2014

A Carer Speaks Out.

I do think, when one is a patient, or by extension, a relative, it is hard to speak out.


1. When one is in an angry or disturbed state of mind, one cannot, physically, think straight.

2. Very often one is not believed.

3. Going back over things, actually causes MORE pain.

My son doesn't seem to want to complain, although I feel he has been quite unfairly treated, I guess the above, or something like that, is the reason.


Friday 6 June 2014

According to an Expert by Experience and Carer:

The discussion about transferring research into evidence-based practice is a very valid one, especially with regard to the Schizophrenia Commission and NICE guidelines recommendation that psychological therapies should be offered as a matter of course, alongside pharmaceutical interventions, from the very start of the treatment..... not left until the drugs, with all their acknowledged side effects, have 'stabilised' the poor patient into a state of readiness to 'receive' talking therapy. In our area, the waiting lists for psychological therapies for people with severe and enduring mental illness are running at around 2 years.

An Expert by Experience writes about side effects of her son.

Dribbling, tardive dyskinesia (which I have witnessed in my son) slurred voice (I was once traumatised by phoning a helpline and somebody had a horribly slurred voice) are in my opinion, appalling. I do not think a drug should be licensed, if it produces these effects.

Several years ago, my son was forced to take Clozapine, on the orders of a desperate, burnt- out and frankly very incompetent psychiatrist. My son, ended up on a medical ward, on intravenous drip, immobilised, vomiting, vomiting, vomiting, non-stop for a whole week. I was going mental, phoning psychiatrist who tried to fob me off with "it's a virus". I asked if anyone else on the psychiatric ward, where my son was imprisoned at the time had come down with a virus. He said no. As viruses are normally very catching, this alarmed me. I protested, but was completely ignored.

At the end of the week, thank God, the psychiatric nurses, placed around my son's hospital bed, to stop him escaping (he had run off to France, was okay for three months, ran out of money, come back, readmitted to hospital), alerted the psychiatrist that the vomiting might be due to the Clozapine. Clozapine withdrawn, torture ended temporarily.

A few years later, I came across an article, some unfortunate had died, obstructed bowel, directly caused by Clozapine. The coroner had ruled, as mental patients, object to taking care of their physical health, the doctors could not be blamed, so my panic had been justified. My son could have died, the psychiatrist could have got away with killing him.

At a tribunal regarding my son, I voiced my horror at the terrible side-effects, I was completely discounted, ignored, brushed aside as if I was stupid and unreasonable.

Monday 2 June 2014

An expert by experience writes about side effects.

It is difficult for us to make definitive comment on the efficacy of various forms of medication, we can however offer some observations and experiences:

1. The side effects of weight gain and dribbling are apparent on a wide scale with many mental health patients. Our son is affected by both. We understand that Clozapine can affect the part of the brain that measures hunger and appetite. The patient then continues to overeat and consequently gain weight. I wonder if there is any evidence of medication affecting an individual’s metabolism? Dribbling is a particularly unfortunate side effect, causing embarrassment and loss of self-esteem. Medication is often prescribed as an antidote but, with relative poor outcomes.

An expert by experience shares their view about physical and mental health.

Physical health care monitoring for people with serious mental illness.

“People with mental health problems often have complex and long-term difficulties with their physical health such as weight gain, smoking and heart problems. They sometimes do not take care of themselves, have inactive lifestyles and may not be able to cope with daily life or work. People with mental health problems have higher rates of diabetes, lung disease, cancer, heart problems, HIV/Aids and other infectious diseases.”

Mental Health of a patient can only be viewed at different stages. I prefer to give them a colour spectrum. Green when they are well. Amber when they are moving into a transitional stage towards psychosis or depression. Red when they are in psychosis or deep depression.
Green = Amber = Red

1. At the Green stage, the patient has a good sense of well being. They are happy. Makes plans for future. Take on projects. Socialise with family and friends. Get involved in social and extra curricular activities. Note: this can only happen to this level if the psychiatric medication is not interfering with the natural progress of their wellness. By this I mean, the side effects of unnaturally lowered metabolism. Side effects of Cognitive functions being inhibited or switched off in some cases depending on dosage. Side effect of intellect being suppressed. Side effect of Perception eroded. And many more. But these are just basic criteria for the patient to be happy and fully compos to be in the Green zone.

2. At the Amber stage some patients are so well acquainted with their illness, that they will know the change has or is coming over. They may not always be clued enough to seek advice/ help at this stage. Something I have always done. I knew when I hit the Amber. But have waited many times for it to subside which has eventually taken me to Red. This is a mis- calculation. Amber stage should never happen if you are fully recovered. If you hit Amber, the chances are you are really going on to progress into Red stage. And that’s where a small increase in dosage of the medication nips in the bud the progression of illness to Red.

3. Red stage . It is advisable to be hospitalised at this stage. Only if it is for a brief spell to monitor the diminishing cycle of psychosis or acute depression.

Therefore given the 3 stages of the cycle of mental wellness/illness, I refer to the paragraph above that people with mental illness cannot cope with daily life or take care of themselves and smoking does become their only source of pleasure. Consequently comfort eating is also a big issue.