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The Royal College of Psychiatrists Improving the lives of people with mental illness

 

Carry on Caring - or what I want from my Psychiatrist

Terence Hughes

 

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 Psychologists.

 

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 2014?

 

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 the illness.

 

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 the carer?

 

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 straight-jacket.

 

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 managed.

 

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 century!

 

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.”

April 2014

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