Carry on Caring - or what I
want from my Psychiatrist
I have been a carer of my son for over 40
years. During that time I have learnt a lot about mental illness,
in the way it has been treated in this country and the people who
are treating it.
My son was diagnosed with schizophrenia in his
mid teens – he is now 56. He has had just about every form of
treatment, yet still survives! Over the years, we have dealt
with 9 consultant psychiatrists, various Registrars and 4 Clinical
Community care was in its early stages when my
son first became ill. Institutions were being closed and chronic
sufferers could end up on the streets. As far as the public were
concerned, the mentally ill were often dismissed as ”loonies” and
psychiatrists were usually portrayed as slightly weird characters
with a Viennese accent. It came as a something of a
revelation to me that severe mental illness could be treated as a
‘medical’ condition and I was immensely relieved to
discover that medication existed to treat the illness – at least in
some degree. .
Like many people who first encounter mental
illness, I looked to the men and women in white coats to sort it
out. Even with all the changes that have happened over the last 40
years with the development of care in the community, I believe that
many carers hold the same views when confronted by the unexpected
and frightening experience of mental illness. How could this happen
to my child,parent, partner? What have I done wrong? What should I
do about it? They turn to the psychiatrist to help because,
regardless of all the other professionals in the field, he or she
arrives with the prestige of the medical.
So what is the psychiatrist’s role in
As in all fields of medicine, the relationship
between the patient, carer and doctor depends on trust. But in
coping with the complex issues of mental illness, trust depends on
far more than professional standing alone.
Careful handling of human relations is crucial
in psychiatry. The carer is deeply anxious. He or she wants to know
what are we up against? Will things get better? Where are we going?
What does the future hold? Yet so little is known, even now, about
the causes and “cure” of mental illness.
At a time when people see remarkable advances
against other forms of illness, the carer can be bewildered by
explanations of the nature of the illness, and how best it can be
dealt with. For example, one psychiatrist argues in a popular
newspaper that medication is little better than emotional slavery
and the chances of recovery are better in Nigeria. Another will
blame poor parenting or social pressure, but the carer wants
answers and some reassurance that something can be done to combat
I believe the psychiatrist makes a crucial
judgment when he/she decides the extent to which the carer can be
informed, or even involved in the treatment of the patient. When is
the right moment for a jargon-free explanation of a diagnosis, of
its likely outcome and what might be in store for the patient and
To be frank I would have been very
disheartened if I had been told that my son would suffer from
schizophrenia for most of his life – and would never have believed
it anyway. Unlike physical medicine, diagnosis and treatment can
also be a matter of subjective judgement. Physical illness is far
more measurable, quantifiable and comprehensible. Mental
illness is not like that.
Trust depends on how the psychiatrist keeps
the carer informed of the progress of the illness and the likely
effectiveness of the treatments available. The least helpful
attitude by the professional is just to sit there and hand out the
pills – which I have seen happen on several occasions. Reassurance
can come in many ways and at least, today’s attitudes towards
carers are very different to those we experienced years ago when we
were regarded as a part of the problem. I now expect to be involved
in any decisions concerning my son’s health.
Along with patients, service-users, carers
bestow power on the psychiatrist to help them deal with what seems
to be an intractable situation. Success can depend on the way in
which psychiatrists use this power. Unlike the field of
physical ailments, mental illness touches our inner sanctum - what
are we thinking?, what are we feeling,?, how do we make sense of
the world when it has gone so badly wrong?
Some patients and carers are uneasy about this
power. They can grow to resent it, even to distrust it. Often I
have heard complaints by those suffering from different forms of
mental illness that they are being locked in a mental
It is here that psychiatrists are in a
difficult position because their decisions involve social issues.
They can be seen as arbiters of social behaviour- and are often
accused of imposing their own social values on the sufferer
which he or she may not accept.
Why can’t I live my life as I want to, they
ask. The carer is then saddled with the task of assuring the
sufferer that decisions are being made in his/her best interest. It
helps if psychiatrists keep an open mind, ready to discuss even the
oddest of ideas put to them by people who feel very
vulnerable and exploited. This also applies to carers who are
committed to maintaining social rules and find it difficult to cope
with the eccentricity of mental illness.
Society’s attitudes towards mental illness are
fundamentally influenced by the relative effectiveness of community
care. The role of the psychiatrist too has changed and is
changing. He/she works as a member of a team which includes
different disciplines and is increasingly involves other
agencies - some of whom have slender knowledge of managing
long-term mental illness.
It is unnerving for the patient or carer to go
into a room and sit in front of a row of five or six individuals –
a social worker, a pharmacist, a care coordinator, a support
worker, a psychiatric nurse, a junior doctor, an occupational
therapist, maybe a few trainees.
The carer wants to know who is responsible for
the patient or service user’s care - who is accountable? s a
carer I want the psychiatrist to be the clear leader of the team to
ensure that the various agencies are doing their job properly. This
is especially so when the patient moves into the community where
care agencies often lack competence in handling mental illness.
Yet there is a danger that the psychiatrist’s
role will continue to be diminished at a time when patients and
carers can find themselves enmeshed in the Byzantine web of
services. Local government departments, contractors of care
services and housing providers have their own agendas that affect
the well-being of service-users. Carers need the psychiatrist as a
protector and an advocate – regardless of managerial and
bureaucratic pressure. A tall order - but matters can easily go
wrong when those who are damaged by mental illness are not well
Unfortunately, the challenge for the
profession is likely to become more daunting as services are cut
back and contracted to companies at the lowest cost. As a sign of
the times, a care company, (the Cambian Group), is being floated on
the stock exchange with a valuation of £500 million and plans to
raise £20 million because of the “significant growth opportunities”
in the mental health market.
Whether psychiatrists regard this as a welcome
development I do not know, but many carers may be apprehensive
about the level of services these entrepreneurs have in mind in
relation to their profit margins. However, it was a pattern of
service in managing mental illness back in the 19th
After many years experience of mental health
services, I have to admit to an admiration for psychiatrists in
coping with this changing world, and have never felt excluded from
discussion of my son’s illness.
I respect the profession’s commitment in a
very difficult area of medicine that, for all the media coverage,
remains too little understood by the public at large. However, when
there is a difficult issue of inexplicable human behaviour, we call
in the psychiatrist to explain the inexplicable or to act like God.
It is a difficult job and as my son says, “Just look what they have
to put up with.”