Schizophrenia

There is no area of healthcare more ignored, more under-funded and more misunderstood that the care of the chronically mentally ill. And of the chronically mentally ill, the worst cared for are the schizophrenics. There was a general clear-out of British long-stay mental hospitals about twenty years ago. The “right-on” slogan was “care in the community”. The chronically mentally ill were thus pushed out of the cuckoos’ nests on to the streets.

The government does not even pay for the cardboard boxes.

The care of schizophrenics in the UK is a disgrace. It is a matter of national shame. The majority of psychiatrists take no interest and pretend that the GPs are looking after them. The majority of GPs take no interest and pretend the psychiatrists are looking after them. The few who do try to take an interest – and it is one of Dr Crippen’s areas of interest - get no support. Most of the work falls upon the community psychiatric nurses and there are not enough of them.

It is just as bad, or worse, in the USA. In Africa it defies belief.

It is usually said that the incidence of schizophrenia is 1%. This is an exaggeration, but it is still a common condition.

The disease is misunderstood and feared. Jekyll and Hyde. “Split personality.” Axe murderers. That’s how the general public sees schizophrenia. In reality, the chronically mentally ill are no more likely to be violent or dangerous than any other section of the community. To talk of “dangerous schizophrenics” is as relevant and as helpful as it is to talk of “dangerous architects.”

Dr Crippen is upset and angered with the common misuse of the word. An eminent politician might say of an opponent, “Oh yes, he is a bit schizophrenic about that.” (sic)

What is schizophrenia really about?

Schizophrenia is about Emma. Emma was a good friend. We met at school as teenagers several years before she became ill. She died recently. Her family asked me to speak at her funeral. At first they did not want me to mention her “illness”. I could not do that. Emma herself never wanted to hide it, and would have been furious if it had been glossed over at her funeral. So this is what I said:


We meet together today to mark the sad and untimely death of Emma .

It is always easier at times like this to talk in terms of celebrating a life, but the problems that afflicted Emma, and her premature death just a few days before her 46th birthday, make it a bit more complicated. And, whatever else one may say, Emma’s life was complicated.

She was born in May 1959 in Cornwall. Her parents were David and Jane, both of whose families went back several generations in Cornwall. Emma was a third child, and young sister to Derrick and Peter. She was unmarried and had no children of her own, but was aunt to Derrick and Peter’s children, David, Alice, Jane, Peter and Freddie.

Emma was educated locally, first at ……….primary school until she was 7 when she moved to ………. Then, at the age of 11, she went to ……… boarding school in ………She stayed there until 16 to do “O” levels and then she left boarding school and returned home to study for “A” Levels locally in Cornwall. After “A” levels, she went to University in Nottingham to read for a degree in English, but only managed a year of that course before she left, once again to return home to her parents.

Her father died in 1978 and thereafter Emma mostly lived with her mother in Cornwall. In 1984 her mother developed cancer and died the following year in 1985.

So far, perhaps, an unremarkable story.

A little nomadic, the sad loss of both parents, but still nothing out of the ordinary. But there was one problem that was very much out of the ordinary.

Emma suffered from schizophrenia.

Schizophrenia is much misunderstood and frequently misrepresented by the media. It is nothing to do with “split personalities”.

Simple schizophrenia, from which Emma suffered, has a characteristically insidious onset, usually in the late teens. It frequently manifests itself with odd and alienating behaviour. Many years may pass with the sufferer being labelled as difficult rather than as ill. It frequently runs a course of gradual but unremitting social and mental decay, and so it did with Emma.

It is a cruel illness that separates the sufferer from people.

Emma was exceptionally intelligent. She was a voracious reader. She passed 10 “O” levels with excellent grades. She was on track for Oxbridge entry.

She may have been destined for great success. We shall never know.

Things started to go wrong in her late teens. For no apparent reason, she found it increasingly hard to concentrate. She began to feel that people were getting at her. She developed odd, seemingly trivial anxieties and obsessions but, trivial or not, they gradually took hold of her and began to dominate her life.

She knew something was wrong. She realised that her concentration and thought processes were becoming abnormal. So she did what she always did when there was something she did not understand. She started to read it up. She researched the problems herself and, round about the age of 18, one morning she announced to her family that she was developing schizophrenia.

No one believed her. “Don’t be so silly Emma, pull yourself together.”

Well, she did try to pull her self-together, but she wasn’t being silly. She was not formally diagnosed by a doctor until she was in her early twenties but it is clear in retrospect that the illness was starting when she was 16 or 17.

Her own diagnosis had been correct.

She was unable to complete higher education. She tried to work to support herself. A variety of jobs followed, initially secretarial work, then office work, then work in pubs and catering. As she deteriorated, she rarely held any of these jobs for more than a few weeks, even the menial ones such as washing up. She became increasingly dependant upon psychiatric care with frequent and often prolonged admissions in various hospitals in Cornwall and then Birmingham.

She saw the best and the worst of the National Health Service.

There were many cruelties to endure. Long term unemployment. Boredom. Loneliness. Lack of interest. Loss of friends. Rejection.

Finally, thankfully, she came under the care of Professor Peter Smith and, under his care, for the first time in years, she had prolonged periods of stability during which, though unable to work, she was able to cope living in the community with some support.

Despite treatment and her own best efforts, she gradually deteriorated. In her teens, twenties and thirties she read widely. She would have completed her English studies at university had she not been ill. Reading, always a source of great pleasure now became, in addition, a refuge.

But her ability to concentrate deteriorated further. Gradually, she found she could only manage books she had read before and knew well. She was fond of the Bronte’s. She would read and re-read Jane Eyre, time after time.

Finally, she could no longer manage even that.

So, one of the final cruelties she had to endure was that her illness, which had already separated her from people, now separated her from books. She went to the theatre, and occasionally the opera, but often could not really follow what was going on. Even television was difficult.

So what can we find to celebrate in this sad and unfulfilled life? Can we look back with any feelings other than sadness? How can we best remember her? Emma would not wish to sweep her mental illness under the carpet. She had schizophrenia and it damaged her life beyond repair.

Her childhood and early teenage years were happy. And as she grew older, despite her illness, there were many periods of happiness, some in Birmingham, and particularly during the years in the Cornwall when she was living with her mother. She could not return to Cornwall as frequently as she would have liked but she talked of it often.

And Emma may have had schizophrenia, but she was not mad.

Apart from the periods of acute and distressing illness, she retained complete insight into her condition, its outlook and prognosis.

Buried under the often sad face was an incredible sense of humour. She was able to laugh at herself and at her illness, and she frequently did. She was capable of great kindness and consideration. She thought the world of her five nephews and nieces.

With help and support from many others, some of whom are here today, she managed to live in a flat in Birmingham with considerable independence.

And there were achievements. Achievements which, in context, were huge. She was an indulgent aunt. She was supported by, and sometimes supported others, with similar problems to her own. She nursed her mother through a prolonged and at times distressing final illness. Most of all, Emma did not give up. She fought. At times a losing battle, but she fought. Trapped inside this wretched illness, there was an intelligent, kind and witty person.

We must remember the intelligence.

We must remember the kindness.

We must remember the flashes of wit and humour.

We must remember that Emma tried so hard and for so long.

Above all, we must remember.


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Shortly after Emma died, her family picked up her clothes and personal possession. There was not much. The personal items would have fitted inside a carrier bag. Indeed, as is so often the case with schizophrenics, they were in a carrier bag. There was a small loose leave folder, and in it a poem copied out in Emma’s own handwriting.

If there is any life when death is over,
These tawny beaches will know much of me,
I shall come back, as constant and as changeful
As the unchanging, many-colored sea.

If life was small, if it has made me scornful,
Forgive me; I shall straighten like a flame
In the great calm of death, and if you want me
Stand on the sea-ward dunes and call my name.

ON THE DUNES
Sara Teasdale (1884-1933)

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So, the next time you see a tramp, or a bag-lady, remember that they are probably schizophrenics taking advantage of care in the community. And the next time you are about to describe someone’s behaviour as being “a bit schizophrenic”, please don’t. Emma would have been cross.

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This article has been posted not only with the permission of Emma’s family, but at their request. The names and other details have been changed.

Illustration by Craig Finn from "How prevalent is schizophrenia?" Full text here.