By Vijay Shah
My blog sports a very unusual name (although perhaps not so unusual as blog names go). The name “Half-Eaten Mind” is uncharacteristic, a mind half-devoured by life and filled up with information. Useless and useful. In real life my blog name is derived from the expression “to eat someone’s mind” – which means to annoy or frustrate a person enough to make their head hurt.
The brain is the most essential organ in the human body. This wrinkly clump of neurons and cells is the body’s control centre, which all other vital organs are wholly dependent on. Its duties include maintaining the heart’s beating rhythm, ensuring blood is kept continuously circulating around the body. It controls the senses, which enables me to see the words flash up on the Microsoft Word document as it moves my fingers across the laptop keyboard, and to feel the breeze of my desk fan as it hits the sensitive hairs on the back of my neck. The brain creates your emotional state, even releasing chemicals that can lift or dampen your mood. It is our brains that have enabled us to be on the summit of the animal kingdom through at least intelligence and creativity alone.
But brains also have to bear a lot of strain, and sometimes for various reasons, things can go wrong. Mental illness is an issue that is often poorly understood by ordinary people, yet it is one of the most significant that society and especially sufferers have to deal with, often for a lifetime. According to the UK charity Mental Health Foundation, 1 in 4 people (25% of the population) have or will experience some form of mental illness, disorder or condition. About 10% of children will also experience mental illness during their formative years. Mental illness is an umbrella term covering everything from extreme stress and depression, through to paranoid schizophrenia and Alzheimer’s disease. Mainstream thought also classifies conditions such as those in the autistic spectrum and Down’s syndrome in this health category, although increasingly mental health activists and families of people with these conditions want them recognised as simply different forms of mental health rather than negative ‘diseases’.
Mental illness not only impacts sufferers and their loved ones, but all of society. Britain’s suicide rate figures show that British men are three times more likely to kill themselves than women. Self-harming as a result of depression and low self-esteem currently affects 400 per 100,000 people in the UK, the highest rate in Europe. Only 1 in every 10 prisoners held in this country’s jails is completely free from a mental disorder. Indeed mental illness, and the discrimination and stigma that accompanies it, can ruin a person’s physical health, employment prospects, relationships and family life. It is estimated that a third of British families have at least one member with a mental health condition, and mental health issues are responsible for half of absenteeism cases in the UK workforce. Yet the National Health Service in the United Kingdom is believed to spend only 13% of its total health service expenditure on treating or aiding patients with mental health matters, according to its own NHS Choices news portal.
People with mental illnesses can and do face much stigma. Whether it may be playground taunts aimed at a dyslexic child who struggles to read aloud in class, or the man with Asperger’s syndrome who is dismissed from his job for being considered ‘weird’ by his co-workers, discrimination can only further complicate a life already made difficult by experiencing mental illness. Slasher/horror movies like Silence of the Lambs, give viewers a very incorrect idea that people with mental health issues are all dangerous knife-wielding maniacs. A lot of this stigma comes from ignorance. A lack of understanding of mental health conditions means people are written off as ‘stupid’, ‘psycho’, ‘messed-in-the-head’ or ‘slow’. Unfortunately, mud sticks and the labels are near impossible to shake off.
Rethink, is the operating name and a public awareness initiative of the National Schizophrenia Fellowship, based in London. Despite the charity’s name, Rethink deals with general mental health and in particular has the motivation to challenge discrimination and increase awareness around mental health issues. Rethink also act as an outreach service for people with mental health issues themselves, enabling them to have a better quality or more independent standard of life.
It began forty years ago, when a man named John Pringle penned a letter to the Times newspaper, which was duly published by its editor. The letter, dated May 9th 1970 is reproduced in part below:
“The word “schizophrenia” is flung about today with flip facility, bobbing up in films, television scripts, literary criticism, even political articles, mostly as some sort of modish synonym for indecisiveness. But no one who has seen the acute medical condition would ever want to use it except in its correct context.
Schizophrenia is a fragmentation or disintegration of the ego, that central “I” or “me” which we all take for granted, unaware of the delicate balance of the elements inside us. According to the severity of the attack, the effects may range from mild disassociation of personality to a total withdrawal from human contact. Virtually nothing is established about its aetiology or its genetic, environmental or other predisposing factors, so no means exist for either prevention or permanent cure. It may strike at any age or in any walk of life, but there is a distressingly high incidence among young adults, including those of beyond average intelligence. The symptoms may shade into those of many other conditions so diagnosis can be difficult.
My son succumbed to an alleged “depression of adolescence”. In his second year at Oxbridge, where he had gone with a major open scholarship. He began cutting lectures and tutorials, shutting himself off in his rooms, and avoiding his friends. It did not occur to the college authorities that this behaviour could be due to anything other than idleness. They neither sent him to a doctor nor told us, the parents, but first took away his scholarship – then as that had no effect, sent him down – with 24 hours’ notice to us. They admitted – afterwards – that suicide notes had been found.
A family suddenly faced with this situation has, in my experience, two problems, and it is hard to say which is worst. The first is how best to cope with this strange, new member of the household whose moods alternate impossibly between sullen lying on his bed in the dark to wild fits of aggression, with social manners regressed to an almost animal level. The second problem is how to penetrate the obfuscating fog of hospital vagueness and evasiveness to obtain intelligible guidance on the first set of problems.
It is understandable that psychiatrists are chary of affixing a dreaded label too quickly, and in fact it was more than two years, after a round of several hospitals and a disastrous second attempt at Oxbridge, before a positive diagnosis of schizophrenia was made in my son’s case. But looking back, were those long months in which we could get no practical sense out of anybody, really necessary?
On almost any specific point on which advice was desperately needed – should he be persuaded to get up, dress, keep himself clean, encouraged to work or study, or just be left alone, which course is best for him? – we grew used to receiving from the doctors’ weary platitudes about showing “patience” or, from the hospital “welfare” side, surprised counter-questions – “Didn’t you ask the doctor that?” Failures in co-ordination and communication, seem to hang about the administrative management of schizophrenia almost like a grim parody of the condition itself.
A personal experience of this kind is inevitably subjectively coloured, but it has persuaded me to look into other cases with which I have no emotional link, and into the general question, and my conclusions are disturbing, particularly about the community provision for the victims of the condition.
Some schizophrenics make a partial recovery. Some stay in hospital for keeps. But thousands more in Britain (the statistics are unreliable) level off like my son at a low level of adaptation, physically fit and normal-looking to a casual outsider, but without application or anything that can be called will-power, and finding most inter-personal relations almost impossibly difficult. Drugs exist which palliate the grosser behavioural disturbances. They make life more tolerable for the sufferer and those around him, but it is hard to hit on a dosage which will not produce a somnolence as inhibiting to normal living as the excess emotion the drugs are designed to suppress or mask. Cases vary, but the very success of the drugs may only make it harder for the outside world to understand that behind the resulting apparent and outward normality the mental fragmentation is still there….
The so-called halfway house set up by a wealthy county close to London is run on strict disciplinarian lines. New arrivals have it rubbed into them that their first duty is to get a job and get out. Use of the premises is forbidden during the day, almost as though intended to make the inmates feel rejected and walk the streets aimlessly, a favourite schizophrenic way of passing the time.
Pressure on schizophrenics to obtain occupation may be right for their own sakes and to prevent deterioration, but hectoring is counter-productive and the ambience which brings out their best is more that of an oversized family than an institution. For this reason the most successful halfway houses are those set up by such admirable voluntary bodies as the Richmond Fellowship whose staff must by now have as much experience of schizophrenic rehabilitation as anyone in the country. But there are tragically few of them.
When all is said and done a hard core will remain, possibly running well into five figures for the United Kingdom, who will never be capable of fending completely for themselves. No social provision exists for them, so their future is bleak. As parents die off and other relatives find it impossible to cope, the inevitable trend is for them to drift downwards to the welfare state’s bottomest sump. “
It was this factual and heartfelt letter on the state of Britain’s schizophrenics and the rampant discrimination and hatred displayed for them in general society that spurned Pringle to set up the NSF, which in turn conceived Rethink.
John Pringle’s brave letter, written at a time when mental illness was a hushed-up taboo spoken about behind closed doors, where sufferers were pitied or pilloried in equal measure, helped bring about a new way of looking at mental health. This turnaround in thinking meant that those affected were supported and also supported each other mutually. Today, the Rethink charity supports almost 60,000 people with varying mental health situations to get through their crises and afford them a better degree of life. Just as importantly, Rethink’s users know they always have a voice and there is someone to turn to.
Rethink are the United Kingdom’s largest voluntary provider of mental health services. They offer:
- Free factsheets and webpages for everyone affected by mental health issues, including information and support materials for families, carers and mental health professionals.
- Give advice to the media and government agencies on mental health policies and improving mental health services.
- 150 support groups covering the range of the mental health spectrum.
- Online and phone-based support and advice line
- Influential and intense campaigning to address prejudice and stigma around mental health and to change government policy and societal viewpoints.
- Membership facilities – anyone can join
- Fundraising – like most charities, Rethink depends on the generosity of supporters to continue their work.
Rethink also actively engage in research around mental health conditions, in order to further understand the causes and cures. They work with scientists, producing evidence to develop mental health policies that will actually benefit people with mental health conditions and ensure that their findings make an impact upon decision-makers.
Rethink have been instrumental in campaigning against outdated legislation that forbids anyone with a mental health issue from becoming a company director or be involved in politics, or even participate in jury service. A new Mental Health (Discrimination) Bill is currently working its way through Parliament. People are encouraged to write to their Member of Parliament to support the bill becoming law and therefore enabling those with mental health issues to participate fully in society.
Their ’20 Years Too Soon’ campaign aims to end the situation where sufferers live on average two decades less than non-sufferers due to often preventable physical diseases. This includes a ‘Physical Health Charter’ – a necessity to improve the physical health of sufferers who may have difficulty with matters such as exercise and healthy eating.
Rethink also push for agenda changes within British politics to bring mental health issues and services to the forefront of Government health policy through grassroots campaigning and face-to-face dialogue with MPs. Their ‘no decision about me without me’ campaign gives people with mental health conditions more say in how they are diagnosed, helped and treated – at the same level as other users of health services. The proposals forwarded by Rethink are now being considered by the UK Department of Health.
Along with many other mental health charities in the UK, Rethink are playing a very important and multi-dimensional role in assisting people with mental health issues, supporting their voices and opinions and combatting stigma and ignorance. But it will be a long struggle before there is no more intolerance and those with mental health issues are accepted instead of feared.
Telephone: 0300 5000 927 or email:firstname.lastname@example.org
SOURCES: Metro Newspaper, Mental Health Foundation, NHS Choices, Rethink.org/National Schizophrenic Fellowship, The Times Newspaper.