Feared Illness Few Dare Mention
The official figures state that one in four people will experience a mental health problem – experts put the true figure at closer to one in three. Statistically, at least, mental illness is as common as cancer.
But it is a world away from cancer in terms of awareness, public perception, empathy and even funding. While most will look upon cancer with understanding in their hearts and something approaching sadness in their eyes, and will readily spare their change for fund-raising efforts, mental health and mental illnesses are not afforded the same luxury.
Indeed it has taken over the ground that cancer used to occupy decades ago – before the high-profile campaigns made it an “acceptable” disease – when the word was only whispered, or referred to as the “Big C” or the “C-word” in polite conversation.
Serious mental health problems are the pariah illnesses that lurk in the under-belly of society. With the exception, perhaps, of depression and anxiety, which are only just gaining public acceptance, thanks to a new understanding of stress, they are rarely spoken of or acknowledged, except maybe in the not-in-my-backyard protests to planning applications for clinics and inpatient units.
People with mental illnesses are not patients – they are “loonies”, “nutters” or, worse, “knife-wielding psychos”. Phil Chick, the Welsh Assembly Government’s director of mental health, said: “The stigma associated with mental health has become very much bound up in language and culture – there are numerous words to describe someone with mental health problems. People use inappropriate language in a derogatory way.
“There are not many other areas of our life, apart from sex, where we hide behind language. This is deep-rooted in our culture and will take a lot of time to change.”
Much of this stigmatisation of mental health has arisen from fear, which in turn stems from the way in which mental health has historically been treated. Ruth Coombs, manager at Mind Cymru, said: “Bedlam was the first real example of people being put in a particular environment – there was no alternative therapy, so people were shut away.
“Within that environment they may have had some form of therapeutic activity – many of the Victorian mausoleums offered good therapies – but, at the end of the day, if people were diagnosed, they were put away. The fear stems from that, from an asylum and people thinking that they had better be careful. People do not understand mental health – it’s not something that is in the school curriculum, it’s not something you learn about and it’s not something that people talk about in a family context.”
Bill Walden-Jones, chief executive of Hafal, said: “There is no doubt that there is quite a lot of fear of mental health and people with mental illnesses. But that is sometimes exaggerated – I think the public is, largely through no fault of their own, ignorant about mental illness and what it implies.
“People do have a special fear of something that they know they could, at some point, suffer from themselves – it can be a difficult thing to take on board. There is also the fact that mental illness can be more difficult to comprehend than a physical problem – people have a pretty good, common sense understanding of a physical ailment, even if they don’t understand all the details.”
At the heart of the stigma surrounding mental health, then, is a general misunderstanding and lack of awareness about its myriad conditions.
Nick Craddock, Professor of Psychiatry at Cardiff University, said: “If you take something like epilepsy, that used to be highly stigmatised – when people did not know what it was about, they thought women were witches for having fits.
“It is now less stigmatised because we understand that it is down to electrical changes in the brain. The problem we have with mental illness is that we cannot say exactly why someone is ill because we don’t understand what is going on. And the general public tend to view someone who has depression as having a character weakness, rather than recognising that it is about changes in the brain that person can’t do anything about. It’s down to lack of understanding of what’s going on. Therefore we leap to conclusions and we don’t view the issue in the same way that we do physical illnesses.”
Rather than seek to understand such complexities, in the same way that we understand physical ailments, we – society – have shrouded mental health in a dark and sinister veil which is easier to grasp and comprehend.
Mr Chick said: “The consequence of a lack of knowledge – call it ignorance – of mental health problems is that we become afraid of it. And what also follows is taboos, where we become afraid to talk about it – cancer was very similar until recently, we were embarrassed about it. I think people are both embarrassed by and about mental health.”
Statistics suggest that mental illness is common, indiscriminate and widespread. And yet, for many of us, our perceptions of mental illness, and indeed those who experience problems – with the possible exception of depression – are not based on any form of personal experience.
Instead our perceptions – and stereotypes – are forged from those rare incidents of mental health-associated violence. While we may not understand the links between mental illness and this rare propensity for unprovoked violence, right-minded society understands violence as bad and symptomatic of a sick mind.
The likes of “mentally unstable” Michael Stone, convicted of the murders of Lin and Megan Russell, and paranoid schizophrenics Christopher Clunis, who killed Jonathan Zito in 1992, and Paul Khan, who killed pensioner Brian Dodd in 2003 in Prestatyn, are the prevailing public faces of mental illness.
These rare killings have become a focus for all our fears about mental illness or, more bluntly, losing one’s mind. Such deranged killers are the epitome of the loss of control we, who have not experienced mental health problems, associate with conditions such as psychosis, schizophrenia and bipolar disorder.
In a sense this minority at the extreme of mental illness has come to prejudice our view of the majority – it is irrelevant that studies have shown that people with mental health problems are six times more likely to be the victim of violence in the UK or that a person is far more likely to become the victim of a violent attack by a white male in his late teens to early 20s under the influence of drink or drugs. “It is not what people want to hear,” Mrs Coombs said.
Such negative stereotypes are further reinforced by the fact that the Mental Health Act allows for the removal and detention of a number of patients considered to be either a harm to themselves or to others – not a million miles away, in many people’s minds, from locking up convicted criminals who have done wrong.
Mr Walden-Jones said, “On the one hand people hear about mental illness in the media almost exclusively in the very unusual cases where something bad happens, like a homicide, and they associate schizophrenia with that.
“On the other hand most members of the public will know people very well who have mental health problems, but they do not associate the two – they see them in two different boxes. Major events of this sort are real news, but the public is liable to associate them directly with mental illness, whereas, in fact, one in 30 people have a severe mental illness so, if it’s not their neighbours, it will be someone a door or two away.”
A 2005 Wales Audit Office report into the state of adult mental health services in Wales said: “Mental illness is a common condition, but typically is not well understood. People are frightened of it and it carries a stigma which adds to the burden of the illness itself and can lead to discrimination and social exclusion.”
And, following a report by the UK government’s social exclusion unit last year, Angela Greatley, acting chief executive of the Sainsbury Centre for Mental Health, said: “Having a mental health problem does not in itself prevent a person from having a home, a job or an education. It is only because people with mental health problems are sidelined by others in our society that they so often face a downward spiral of ill health, poverty and isolation. This spiral must be broken as a matter of urgency.”
Cliff Prior, chief executive of Rethink, added, “People with severe mental illness who are on benefits can recover and make a meaningful recovery. They tell us they are often held back by stigma and prejudice.”
Mr Chick said, “This stigma has a huge impact on people with mental health problems – they become isolated from the very everyday things that we take for granted. Employers are significantly less likely to employ someone with a history of mental health problems rather than those with physical health problems or a disability – that’s often born out of fear and stigma. This also means that people have less access to things in terms of social life, which can be closed to them, which in turn can hamper their recovery.”
In addition to having a direct impact on people with mental illness, some believe that such entrenched stigma and the lack of awareness about mental health generally, may also be having an impact on the quality and accessibility of services.
Mental health services are often described as “Cinderella services” because they play second fiddle to the physical services provided by the NHS. Historically they have not been given priority by service planners and commissioners, and people with mental health problems have not had the necessary access to the range of specific services they need.
It could be argued that this is not just an historic problem, as figures released by Mind last week revealed that prescriptions for anti-depressants have risen by 6% in the last year. Research revealed that many doctors felt they were prescribing the drugs too often, but they were doing so because patients wanted medication. They also said that funding was often not sufficient for alternative behavioural therapies and other counselling treatments.
So, is there a connection between widespread public ignorance, and general stigmatisation, of mental illness and the poor state of mental health services?
Prof Craddock said, “It is important to recognise that, generally, governments and governmental organisations have identified that mental health is an important area – at some official level it has been written down that it is a priority – but the crucial thing is what really happens on the ground. Mental health is still very much a Cinderella speciality and I think that the general public stigma about mental illness pervades all walks of life – I think that health service planning and delivery will also have that stigma.”
But Mr Walden-Jones said, “There may be some connection, but the public is not blame for matters that are the responsibility of the state. I would go further and say that the public would be appalled if they knew how people with a mental illness are treated. For example, if you asked a reasonable person who has not had contact with mental health services what happens in a mental hospital, they would say that someone would get medical and psychiatric treatment.
“But only the former is true – most people do not even get friendly contact from anyone. It is very common for us to hear that the only person who gave them any time of day was the cleaner. And if we asked that same person what happens to someone who is severely ill, who gets into trouble with the law, most would say they would be locked up in a mental hospital.
“But, at a conservative estimate, there are more than 400 people from Wales who are locked up in a prison, who have a mental illness – people who are psychotic. There is a particularly high proportion of women who are packed off to English jails. I think most members of the public would be appalled that someone would be sent somewhere that is not a hospital, but is extremely scary, dangerous and unpleasant for someone with a mental illness.”
The last Welsh Assembly Government repeatedly stated that mental health was one of its key health priorities – it set out its aspirations for a modern, community-focused mental health service, based on the principles of empowerment equity and efficiency, in 2001. A year later these were translated into the National Service Framework for adult mental health services.
More recently the Designed for Life blueprint for the future of the NHS has outlined plans to remodel mental health services and to provide significant capital investment to support such modernisation.
But despite these strategy documents, a Wales Audit Office report into the state of adult mental health services in Wales in October 2005, found problems with the way services are planned, organised and monitored, all of which “are jeopardising the success of the Assembly Government’s national service framework”. It pointed to “significant gaps” in the provision of community services, delivery and funding.
Jeremy Colman, the Auditor General for Wales, said: “Services for adults with mental health needs have a long way to go. The Welsh Assembly Government should use the findings of this report, and other external reviews, to develop a clearer approach for the future to make sure people with mental health problems in Wales receive the quality of care they deserve.”
Mr Walden-Jones said: “We should give the Assembly Government some credit – some energy went into the planning, some resources went into mental health and some efforts were made, but there was insufficient resources and too many things did not become a reality because we have the wrong structures.
“Most local health boards, NHS trusts and most councils do not treat mental health as a priority. NHS and local government senior staff know that they are going to get into more trouble if they do not do anything about other health and social care issues, rather than mental health.
You don’t fear for your job if you don’t hit all the targets in mental health, but you start to get a bit worried if you fail to get waiting lists down.”