Further notes on clozapine

First of all some terminology I've come across: treatment resistance and
treatment refractory. The former is where clozapine is used because
people don't respond to the standard doses of neuroleptics. The latter
is related to what happens when clozapine doesn't work. Psychotherapy is
not involved in these concepts of treatment resistance in schizophrenia.
I think this is because the thinking in the material I'm reading is
still biomedical. If Meehl's hypothesis about schizotaxia is correct,
it's life that makes a person become a being on the schizophrenia
spectrum, schioztypal personality disorder or schizotypy. To me this
means it can be undone by life too but that's belief rather than evidence.

Anyway, NICE's guidelines recommended an absurd treatment for treatment
resistance, clozapine, but one that is only used because it is effective
when nothing else is. Before the invention of the neuroleptic
psychiatrists still achieved recovery in patients they saw as truly
schizophrenic however I know very little about how this was achieved.

_*Biomedical options*_
Neuroleptics are used for their anti-aggression properties outside the
treatment of psychosis. They are tranquilisers: things that calm people
down without putting them to sleep. Apparently they also reduce the
delusions/hallucinations in some people. What's extraordinary is that
this isn't the primary aim of treatment for schizophrenia. The drug was
primarily introduced because it calms people down.

There is at least one other type of drug that calms people down in this
way, the compounds found in cannabis know as cannabidols. CBD has been
found to be as effective as atypical antipsychotics in at least one
randomised control trial. Given the amount of guess work in clinical
psychiatry it seems sensible to trial this in patients who are resistant
to conventional antipsychotics. The side effects are fewer so there may
be higher rates of adherence to treatment.

I can't estimate the difference in risk between high doses of atypical
antipsychotics and standard doses of clozapine. The risk of
agranulocytosis means it makes sense to consider high doses of
antipsychotics before trialling clozapine. Someone must have thought of
that however the psychiatrist who put me on a double dose of quetapine
clearly thought the risks involved with standard doses of clozapine were
worse than high doses of quetapine.

The only paper I've seen that investigated alternatives looked into
polypharmacy however it seemed lacklustre research and I couldn't read
the full paper.

Moncrieff's critical paper on clozapine research throws the medical
establishments high regard for clozapine into doubt. It has celebrity
status because of the first trial which showed such extraordinary
effectiveness in the once considered untreatable 'disease' called
schizophrenia. She cites a Cochrane systematic analysis which makes
similar points that the size of the effect was not as significant. An
RCT in America shows it reduces parasuicidal behaviour better than
anything though not the completed suicide rate, however an observational
study in Finland seems to show it 'treats' suicide best.

Non-drug options
The data from an observatioanl study in in Finland was compared with
other mortality risk studies across the world in a paper looking att the
increasing mortality ration. Finland had an SMR of 3 whereas
neighbouring Norway has an SMR of 1 and the UK and SMR of 5. A
schizophrenic in the UK is significantly more likely to die of the
effects of the supposed brain illness than in Norway.

My child mind thinks what the fuck? It makes me think that the world
should know what's going on in Norway and try and replicate it. I am so
surprised no one else has clocked on to the fact that the Norway is
clearly the most advanced society in Europe and leads the way at
reducing the disability of schizophrenia. This is something that can be
controlled. Whatever they are doing is working. I wonder if whatever
expensive interventions and refinements to their mental healthcare
system could be taken and offered to the people who are treatment
resistant and refractory in the UK. I fear that they may be coercive
practices but I'm not sure. Their well funded social care system may
work in a different way to save the lives of these people.

The NICE schizophrenia guidelines recommended annual health checks. I
assume these are happening for all patients but it's probably vital that
those taking clozapine are guaranteed those. It's more complex though.
Another study points to significantly fewer essential heart operations
for peoiple with a diagnosis of schizophrenia in the UK. This is another
thing that seems to have slipped people by. Who's gives a shit about
another dead schizophrenic right? (seems I've come up with a campaign
slogan...). The reasons for this may be numerous however it needs to be
fixed because this is a cause of death.

Those on clozapine may only be getting clozapine as treatment. There are
well being or distress factors that need to be considered. A person can
not be left to die on clozapine. In this area the UK fails everyone with
a diagnosis of schizophrenia. I don't know what standardised
psychotherapies and psychosocial interventions are offered for people
who are treatment resistant. Oh wait...yes I do....fuck all. The NICE
guidelines recommended against more of those than it recommended for. A
single type of therapy amongst the 400 other psychological therapies was
recommended. That's all though. And only 16 sessions.

There needs to be a research effort to seek alternatives to clozapine
and to find psychotherapies for treatment resistance. Psychotherapies
may not work with the same measures as are used for medication. GAD and
PHQ may be more appropriate than PANSS. There is the life of the
individual and what happens to them and this is completely ignored by
any treatment protocol that ends with medication. Medication is at best
a temporary solution. It should enable healthcare professionals to help
the person maintain their life course after crisis. Anything that sees
the person rather than the 'disease'.

Here's my favourite mad idea. Initially in my communiques with my MP
last year I sugested an unlimited budget for psychological therapies
based on a n of 1 treatment method (a fancy way to say trial and error).
I thought that people could find a therapy or therapist that worked for
them and given the risk of death from clozapine it made sense in my
naive head. There's no such thing as an unlimited budget but I felt that
for 6000 or 7000 patients who would die sooner because the emdical
profession is too lazy to look for an alternative this would be fair.
The cost would be the same as for Herecpetin treatment which is about 16
million a year for 500 people and offers a couple of years extra of life
expectancy. 'course....no one gives a shit about another dead
schizophrenic. The cancer lobby are far better funded.

But that's not my mad idea. My mad idea is research and therapy
combined. More of the latter than the former. The people dying on
clozapine represent an etreme. They represent an opportunity to
understand the whole syndrome by the extreme pathology. Thins could be
learned about the lives of schizophrenics. What they wated in life. What
motivated them. What saddened them. Real human questions. The sort of
reseearch questions never asked by psychiatrists.

Answering those questions is the primary goal of the research.
Understanding the the human being that becomes lost in the psychiatric
definition of treatment resistance would be a step forward in what is
genuinely treatment. Leaving someone to rot trapped in a chemical cosh
that kills them quicker is not medicine. It is social control that
Stalin would be proud of. Things came come out of this sort of research.
Simply understand that many schizophrenics kill themselves because of
tiredness or because life has taken so much away there's nothing left to
lose or understanding what it feels like to have your life dreams taken
away and to end up begging for an existence might help people come up
with therapies to treat the problems of schizoprenia with something
other than drugs.

Now here's why I like this idea. The research project that does thus for
/every/ person on clozapine and researches them over time. Once or month
or even once a fortnight a researcher goes out and spends an hour or two
chatting to the person to do the research for the length of the person's
life. Think some readers might laready be into why I think this is a mad
idea. The research is a healthcare intervention. It carries the power of
any psychological therapy without the treatment aim. There's no outcome
measure but providing social contact. The social contact isn't a mental
health professional. It's not a therapist. It's someone who's just
interested in finding out more about the human being to help other
people who have the condition. It's sort of weird to admit to the
healthcare value of the idea but dismiss it at the same time if that
makes sense. The primary aim is research but the primary aim for me is
the right sort of social contact that might help people with their
journey in life. Whether this would help the life expectancy or diminish
the pathology I don't know. Put it this way. The system would have to be
totally honest that the research had a part goal of making the person
feel better but the researcher wasn't a therapist. Schizophrenics can be
smart and perceptive, sometimes beyond the power of the information
given, so no lies to them about the motives. The research is genuine
however the researchers understand that there's a hope the reserch will
make them feel better.

The NICE guidelines suggest CBT and 16 sessions of the stuff. In my
belief a year's worth of researchers time once a month as well as CBT
(and other therapies) for people with a diagnosis of treatment resistant
or refractory schizophrenia could lead to better outcomes. Additionally
the research provides a new dataset and a unique dataset that's not
about numbers but about people. Whole new understandings of treatment
resistance as well as the indiivdual rather than the diagnostic label
could be achieved. The subjects represent an opportunity rather than a
challenge. They should provide the same excitement as a physicist would
feel given the opportunity to understand the heart of the sun or something.

Treatment refractory
For these people I fear the most. I don't know what happens to them. Are
they electrocuted? Is psychosurgery attempted? Ir hugh dose polypharmcy
with clozapine and other drugs? Are they just locked in secure wards to
rot their lives away? I can't imagine the suffering of this group and
what the healthcare system does to them. I fear it is not a good journey
in life.

Ethics
The knowledge of death and reduced life expectancy caused by the use of
clozapine and other drugs must be considered carefully because the
motives must be pure. It is not for the treatment of behaviour that it
is ok to risk life. At least not if it is called medicine.
Antipsychtoics could be put in the water supply in prisons to control
aggression but they aren't and this is a terrible idea. Putting people
on drugs for life for fear of aggression and tranquilisation without
trating the illness itself is unethical medicine. It just doesn't get
any simpler to me. Black men in the UK are being killed quicker using
treatments for schizophrenia however they may not be treating what is
considered illness, just what British society calls unwanted behaviour.
Psychiatrists when using drugs for socio-political reasons cross the
bounadry between doctor and non-doctor. The latter do not have the
privelidge of healthcare nor of healership. They're just murderers.