DMH 377 Supplementary Evidence from K
Sheldon
Following on from the session of November 10th
at which Mind and No Force were giving evidence, as one of the
witnesses I have decided to take up Lord Carlile's offer to submit
further information on some of the issues discussed during the
session. I believe Mind are also submitting extra information
but I am submitting this evidence as an individual having been
subject to compulsory powers on numerous occasions. As well as
being based on my own personal experience, the evidence is also
informed by contact with thousands of other service users, particularly
in my roles as a mental health advocate, a reviewer with the Healthcare
commission and a Mental Health Act commissioner.
Invasive treatment
The most common invasive treatment used is medication,
either as an injection or, more often, in an oral form. Whilst
I accept there is a role for medication in mental health (I take
it myself from time to time), the unwanted effects associated
with all forms of medication (including newer ones) are often
intolerable and greatly impair the quality of life of the people
being prescribed them. It is still unclear how psychiatric medication
actually works and is prescribed with the aim of eradicating all
psychiatric symptomology as defined or detected by a psychiatrist.
The result of this 'blunderbuss' approach is that numerous extremely
unpleasant unwanted effects are frequently experienced by patients.
Three that I would particularly highlight are:
- An inability or a significantly reduced ability
to experience pleasure. This is a very common effect which is
frequently not recognised by clinicians. It is often misdiagnosed
as depression or apathy but is qualitatively different from both
these emotions. Having experienced this feeling of anhedonia
from several drugs, I cannot emphasise strongly enough just how
debilitating and pervasive this feeling, or lack of feeling, is.
You just exist. There is no point in being alive. I suspect that
many service users use illegal drugs, drink excessive amounts
of alcohol, overeat and sleep excessively to escape the horror
of anhedonia. The feeling of anhedonia disappears within days
of stopping the medication.
- The second effect is feeling tired and without
energy. This is also different from depression and apathy, and
indeed anhedonia. Clinicians do not take this very common side-effect
seriously, seemingly believing that it is a small price to pay
for the obliteration of psychiatric symptoms. Very few service
users would concur with this.
- An excrutiating feeling of inner restlessness
characterised by an inability to keep still (akathisia). This
side-effect can only be described as torture. Again it is often
overlooked, not taken seriously or misdiagnosed by clinicians-
agitation, anxiety, overactivity, pacing. It is proven factor
in suicidal behaviour: I would rather be dead than suffer akathisia
and I am lucky to alive.
There are numerous other unwanted side-effects, some
of which respond to anti-side-effect medication, unlike the 3
mentioned above. Incidently, the medication prescribed for side-effects
such as shaking, stiffness, drooling etc. is highly addictive.
On several occasions it has taken me several weeks to wean myself
off on a literally crumb-by-crumb basis.
A colleague of mine recently told me that she was
advised not to come off lithium carbonate as she would relapse
within 6 months. She ignored this advice, and it's not the fact
that this happened 4 years ago and has she not 'relapsed' in this
time that had the most impact on me, but her comment that she
would willingly have relapsed "just to spend 1 day off lithium
and its appalling side-effects".
In time, I have no doubt that the forcible administration
of medication will be viewed as a violation of human rights: liberty
& security of person; cruel, degrading treatment; even torture.
There needs to be much more emphasis on other approaches
to managing and coping with the whole range of mental health issues
which should be recognised as valid alternatives to medical interventions.
Many service users - survivors - have had to develop their own
strategies for surviving and thriving, often without, even against,
the support of the mental health services. Service users should
be actively encouraged and supported to develop their own strategies.
In turn, staff working in the services should be empowered and
trained to engage in this more holistic approach which focuses
on individual autonomy.
The most acceptable and effective care plan that
I have ever had, is the one I devised myself.
Community/Non-resident Treatment Orders
As I said last Wednesday, there is no doubt that
I would have been subject to this type of order if it had been
available under the current act. I was viewed as a revolving-door,
non-compliant chronic patient. If I had been subject to compulsion
in the community I would have done everything I could to disengage
from the mental health services, including taking my own life.
The fact that people become "revolving door"
is the due to the inadequacy of the services. Simply compelling
people to take medication/live in a certain place/do certain activities
is short-sighted and inappropriate not to mention intrusive and
de-humanising.
The role of carers is important but should not be
over-emphasised. This partly to ensure that the service user's
right of self-determination is not encroached and partly not to
place an inappropriate - often intolerable- burden on the carer
and wider family unit.
The example that a non-resident order would be appropriate
for someone whose kindly parent would like to look after him/her
at home is wholly misplaced. Firstly, parents or carers can look
after their relative/friend at home now. The reason that this
often breaks down is lack of support and follow-up by the services.
It seems almost that the compulsion element is really about compelling
the services to continue to be involved. It seems strange that
an individual can have their civil rights curtailed to ensure
that the mental health services to their job!
On Wednesday, a great deal of time was spent discussing
the example of a person harassing another person to the extent
of the other person being seriously affected by this. We went
round in circles but the key point the witnesses were trying to
get across was that, not that it would have been inappropriate
to 'section' the perpetrator, but that the threshold for using
compulsory powers must be much higher than is proposed.
I gave the example of the horrendous 2 year harassment
campaign that I was subjected to by a psychiatric nurse. The point
which I failed to get across was that there was very little that
the law could effectively do about it. The perpetrator was not
unwell, just simply a very unpleasant person. She should not have
been, and was not, subject to the Mental Health Act. If a person
with a mental health problem committed the same degree of harassment
as this nurse, should they be subject to compulsory powers? I
think not, as this would be unequal and discriminatory.
There are very many people in low and medium secure
mental heath units who have committed minor crimes (many of them
not even prosecuted) largely due to their mental health problems.
If the same crimes had been committed by someone without mental
health problems, he/she, at the very most, would have completed
a short custodial sentence. Most would not have been prosecuted
or would have been given a warning, a fine or community service
etc.
Patients languish in secure units for months and
years. This cannot be a fair or humane state of affairs. They
are, in effect, being punished for being mentally ill.
Compulsion is being used more and more to inappropriately
control people and as a substitute for inadequate and inappropriate
services. The proposed Mental Health Bill clearly - overtly even
- seeks to extend this.
The need for an effective interface between the health
service and the criminal justice system is just one example of
where services for people with mental health problems require
more development and improvement. However, the current inadequacies
of services, together with a reaction to a few non-representative
high profile cases (which seems contrary to the government's desire
for evidence-based practice!), cannot be allowed to inform the
development of mental health legislation. It is fundamentally
wrong, unethical and in breach of human rights.
People with mental health problems, particularly
those of us with severe and/or ongoing difficulties, do not need
legislation that increases even further the levels of discrimination
and marginalization we face in society.
On one hand we are being told that we are "experts
by experience", that our opinions should be at the heart
of mental health policy and practice and yet our views about legislation
that will have a profoundly detrimental effect on our civil liberties
and human rights are repeatedly given little credence. We need
to be listened to and to have our cause championed.
November 2004
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