Gillian Brightmore says we need a cultural shift in the way we think about and treat mental illness
My own experiences as a former user of mental health services have led me to question a shameful state of affairs in which a 19th Century model of care is still operating in today’s Wales. Raising awareness in and outside the mental health profession is long overdue if we are to tackle the current 19th Century Victorian asylum ethos of containment and censure rather than ‘healing’. After all, one in six of us will be subject to one or another of a wide range of mental afflictions at some stage in our lives.
Hopelessness is the overwhelming feeling many people have when they first become ‘mental health service users’ and find themselves on locked wards in the company of staff who have become ‘hardened in the present system of care’. As one fellow user put it to me, “Fear rules” in circumstances where natural human feelings such as empathy and compassion are suppressed.
|Spotlight on Mental Health
In a week it was revealed that Catherine Zeta Jones has suffered from bipolar disorder,we launch a series of articles on the experience and treatment of mental illness in Wales. Tomorrow Robin Williams, a Cardiff-based Patient Advocate, says that if you seek to help the mentally ill you must possess dogged persistence. On Sunday Phil Carradice describes a writers’ project that is bringing some sanity to Whitchurch Hospital in Cardiff. On Monday Elin Jones describes how her experience of dealing with her husband’s schizophrenia led her to become chair of the Welsh mental illness charity Hafal.
Go on any mental hospital ward today and you will find patients as well as staff who have become brutalised by a system not designed for ‘care’ but rather for ‘control’. In this situation sufferers who are at their most vulnerable become victims of an archaic system. Many mental health patients have little input into their treatment. For instance, they rarely have access to their ‘Care Plan’. Some probably don’t even know they have one. There is little by the way of ‘patient empowerment’ in our mental hospitals.
In my experience there is a visible disdain even contempt for patients, from psychiatrists downwards in the pecking order. There is a them and us situation in which patients are often regarded as ‘other’, with different states of mind that are often ridiculed by staff. This is particularly the case in the treatment of women, the elderly, or patients who have a different sexual orientation (as highlighted in Stonewall Cymru’s 2009 report for the Welsh Government, Double Stigma).
As the Gay Community has reclaimed ‘queer’, so those working in the mental health community should address the role of the terminology they use in undermining their patients. The common usage of such terms as ‘nutter’, ‘looney’, ‘psycho’, ‘basket case’ ‘Nut House’ and ‘The Bin’ should be regarded as unacceptable.
There is still a stigma associated with mental illness which, unlike other ailments such as epilepsy, diabetes or cancer, has the added association of ‘blame’ and censure. This attitude is as pervasive within the mental health professions as outside. It leads to bullying by staff and also by the police who can be involved when a person is ‘sectioned’ – that is, forcibly detained often for lengthy periods of time.
From my own close observations we should also be mindful that once diagnosed a person often endures a lasting stigma, accompanied by low self esteem and a prolonged sense of hopelessness that can effect their future employment as well as earning power. Many in the health professions operate in a state of denial about the impact their labelling can produce.
From the perspective of contemporary cultural theory an individual can be said to possess a multiple number of selves, so that such conditions as depression, schizophrenia or bipolar can be seen as a dislocation of the true self or an aberration, rather than simply a ‘brain disease’ and thus a medical ‘condition’. Furthermore, patents often become institutionalised after years of enforced drug taking in near asylum conditions amounting to incarceration that in some cases can last years.
Not a lot has changed since One Flew Over the Cuckoo’s Nest was written and filmed over 30 years ago. From the auxiliary staff to the psychiatrists – usually white middle class males in late middle age – there exists a hardened attitude more akin to prison warders than health professionals. They operate in an atmosphere where fear and control predominate alongside the labelling of individuals.
A particular horror for in-patients receiving medication is the weekly ordeal of the Ward Round. This is similar in atmosphere to a Star Chamber of ‘experts’ in which close scrutiny of the in patient is played out in a very small room no more than six by eight feet. The patient is put on show – there are no other words for it. Every word a patient says is scrutinised and then ‘judged’ to be – ‘sane or insane’, by self appointed experts of the human mind. This is a truly terrifying ordeal for any patient because these sessions can result in their being detained for long periods of time, or even indefinitely, under mental health legislation.
The list of medications is now an endless litany, including Diazeapam, Effexor, Prozac, Olazapam, Rispererdral, Ritilin, Metazapam, Llithium and Clozapine. The last was described to me by one ‘user’ as “a tunnel you can never escape from”. These substances are given out like Smarties on mental health wards. However, they are nor sweets. They are mind altering drugs which in some cases can be as lethal as heroin. All of them have serious physical as well as long term side effects such as weight gain, digestive problems and in some cases kidney failure. Yet patients are not encouraged, indeed not allowed, to question their medication. Instead they are bullied into swallowing it in the presence of staff.
While they can be helpful on a short term basis I do not think the widespread use of these drugs can offer a real answer to complex life and social issues. Indeed, research has demonstrated that placebos can often be as effective as anti-depressant drugs which underlines the psychological rather than physical component of much mental distress.
Patients often become the unwitting victims of endless courses of medication with no attempt to wean them off with the offer of other therapies. I have heard staff openly refer to this continual drug treatment as “the revolving door”. That is to say, it is a form of continual re-admission with no cure. This is equivalent to the prescription of a chemical cosh, amounting for some to a chemical lobotomy.
While it has to be said there is no ‘magic bullet’ or ‘cure all’ for many mental conditions, the drug pathway offers far too simplistic an approach for something as complex as the human mind, particularly when it is not supported by other therapies. One is Cognitive Behavioural Therapy, the so-called talking therapy, which if my own experience is anything to go by, can offer a way out of the spiral of despair. It deals with the connections between thoughts, feelings and behaviour, for it is often the case that if we change the way we think about our feelings we can change the way we feel.
Of course, when compared with pathways offered by drugs such therapies are relatively expensive in the short term. And with NHS waiting lists so long their prospect may be like looking for water in a desert. But surely it is a better and more humane approach than ‘blanket sedation’ for sufferers of mental health problems. Surely such therapies are preferable to the conventional treatments that simply provide a passport to a life on heavy mind altering drugs with severe side effects that can include the breakdown of relationships and family ties, and in some cases eventual homeless and wider societal problems.
A professional change of mind on this will require a cultural sea change. The vested interests of the drug companies and many in the professions and the health bureaucracy will need to be overcome. This is likely to be more difficult in Wales since we are at least a decade behind England in terms of patient involvement with their treatment.
It will be up to the Welsh Government to take a lead, if it is to shoulder its responsibilities in taking forward the human rights of mentally ill people, as enshrined in the revised 2003 Mental Health Act. We need to place the field of mental health within the broader agenda of human rights. A practical way of achieving this would be to apply the experience of the expert patient initiative in other chronic conditions to mental illnesses.
Alternative forms of treatment and coping strategies that help to build up forms of resilience should be used as coping strategies. Use of such strategies as Cognitive Behavioural Therapy and Peer Advocacy may be more expensive in the short term. However, in the long run they are more effective for the individual sufferer and, by reducing hospital re-admissions, will save the NHS £millions.