Give me my life back

This
week’s multi-disciplinary panel comments on how a man dia gnosed with
schizophrenia can be helped out of his apathy.

Case
study

The
names of all service users mentioned in this article have been changed.

Situation:
Roger Castlemaine is a 48-year-old white male who has been a diagnosed
schizophrenic since he was 18-years-old. He receives depot injections for his
condition. Castlemaine, whose son is likewise on medication, also looks after
his 82-year-old mother.

Problem:
Castlemaine feels that his life has been wasted, although he has been grateful
to hold down the occasional low-paid job. He believes very strongly that his
injections have made him "a pathetic man". He feels so
"un-alive" while on medication (he uses Largactil, an anti-psychotic
drug) that music, once a passionate love, now does nothing to lift him. He
feels he has no emotions – he can’t get happy, sad or angry. He has been told
that this is his schizophrenia but he rejects that. He believes he is suffering
from drug-induced apathy. He says he would rather be ill than be on medication.
Feeling so numb and "out of it" has depressed him, to such an extent
that he has even considered suicide. During these low points, Castlemaine has
embraced Christianity, finding a comfort and understanding, he says, that has
not been on offer to him from his doctors. His son takes olanzapine which, says
Castlemaine, helps him to cope "without turning him into a zombie".
His 30 years of medication have, for Castlemaine, quite simply "ruined my
life".

Panel responses

Mark
Trewin
Roger Castlemaine’s situation is a reminder to mental health professionals that
service users have to consider the effects of the medication that they take
against the possible benefits. While medication can help, the side-effects mean
that there are also major risks involved. Mental health professionals are
increasingly discussing these issues with service users and supporting them to
find a balance. An attitude of "compliance at any cost" can be
damaging.

In
this situation, Castlemaine would probably benefit from a fresh assessment of
his health and social needs. The needs of people with a stable but long-term
mental health problem can often be overlooked. It appears that there are many
issues that are important to Castlemaine in addition to medication, such as his
role as carer, his physical health, his spiritual needs, his access to
employment and leisure activities. This assessment should be undertaken from
his point of view and with his full involvement and should lead to a care plan
that identifies the changes he feels are important and how these would be
achieved. Castlemaine is likely to gain a great deal from feeling much more
involved with the way his care is planned and carried out.

The
mental health team could support Castlemaine to change or reduce his medication
in an attempt to reduce the side-effects. There may be alternative ways of
supporting his positive mental health. It could be time to review the relevance
of his diagnosis. It is important that he feels that he is being listened to
and this may be a vital part of that process.

His
role as a carer, both for his mother and son, should be tackled, as he may need
support in this area that is separate to his own mental health needs.
Castlemaine is depressed and has expressed suicidal thoughts. Giving him the
opportunity to express how he feels, while attempting to resolve some of the
issues could reduce the risk of increased depression.

The
important principle in this case is that people with a mental health problem
have a right to live full and satisfying lives. If our treatment of mental
health problems compromises this basic right then we need to reconsider the way
that we support people.

Gill
Rowe-Aslam
Roger Castlemaine’s aspirations have not been fulfilled. He gives a clear
impression that, despite his achievements, he wishes for more. He does not feel
motivated enough to actively pursue his interests. In addition to this he
describes his emotions as very flat, which appears to be a source of further
frustration to him.

This
hinders his ability to care for himself, has a negative impact on his
self-esteem and prevents him from feeling able to offer any practical or
emotional support to his son or mother.

Through
the care programme approach the issue of a medication review could be addressed
in a structured and focused way. Castlemaine may wish to explore alternative
types of medication or treatment. The benefits of complementary medicine and
alternative approaches could be also be considered. For example, the Hearing
Voices Network – a self-help organisation for people, many of whom have been
diagnosed as schizophrenic, or the Hearing Voices workbook¹
(a way of understanding and managing voices). He may also wish to be involved
in a local user or self-help organisation, which he may use for support of his
own needs, or prefer to be more actively involved in supporting others. It may
be helpful for an advocate to accompany him to a meeting to assist him in
representing his views.

Assuming
the outcome of this was successful, Castlemaine would hopefully feel more in
control and motivated. This would then give him and his care co-ordinator room
to address the further issues of his daily activities and pursuing interests.
He could be supported in taking up job-related training with a view to
re-entering employment.

If
Castlemaine has found Christianity, a source of comfort and understanding for
him, it is important for this to be acknowledged and any wishes to work within
a spiritual framework should also be explored.

It
appears that Castlemaine actually holds two roles in all this, in that he is
both the cared for and the carer. Therefore, not only is he entitled to an
assessment of his own needs, but also of any additional needs he may have as a
carer of both his son and 82-year-old mother.

¹
J Downs (ed), Coping with Voices and Visions, Hearing Voices Network. Available
from 91 Oldham Street, Manchester M4 1LW. Tel/fax 0161 834 5768

User view

I
find this man’s situation tragic, writes Kay Sheldon. There are many people
with long-standing mental health problems who have been overlooked by current
mental health practice and policy. It is often easier to "maintain"
us, carrying on with the same regime, year after year, without considering the
impact this has on quality of life.

Roger’s
mental health needs should be completely reviewed by his community mental
health team in a user-centred and holistic way, including a review of his
medication. In addition, his social set-up and his occupational status should
be discussed in depth with him. The team should establish a mutually respectful
partnership with Roger, encouraging and supporting him to make decisions
himself.

I
have little doubt that, having been there myself, Roger’s apathy is due to his
medication. It may be that Roger would like to come off medication altogether –
this should be supported and facilitated by the team, including developing a
contingency plan with Roger, should he start to become unwell. A different
anti-psychotic, maybe one of the newer ones, or an anti-depressant or both may
be preferable alternatives to Roger. He could find it quite difficult to come
off his current medication because of withdrawal reactions, especially from the
Largactil, which, contrary to popular belief does cause such effects. Also,
psychologically it can be daunting to let go of something that has been part of
your life for so long. Whatever is decided, it is important that Roger feels
both in control of his mental health and supported enough to take this
responsibility.

At
48, Roger obviously feels that he has missed out on a large slice of life.
Counselling may be helpful in coming to terms with his loss and to help him
think more positively about his future. Counselling may also be beneficial
when, or if, Roger recovers his emotions, which can be difficult to cope with
after such a long time of numbness.

On
a practical level, Roger could be helped to make changes to his life and to
rekindle some of his former passions. Help with caring for his mother might be
useful, if he is tied to the home. Efforts could be made to reignite his
musical interests.

Voluntary
work or doing a course could help him put some meaning back into his life.
Roger deserves all the help the services can offer him to move on from just
existing to actually living once again.

Kay
Sheldon is a mental health service user.