Bolton Data for Inclusion

The Action Research Centre for Inclusion

(Sponsored by: The Barrow Cadbury Trust)

at

Bolton Institute of Higher Education.

Data No 23 :

June 1998

Author(s) :

Ms J Harwood

Title :

Standards of care within the mental health sector

Abstract :

A personal look at approaches to care within the mental health sector, and a brief look at areas where there needs to be change.  Including: improving our perception of mental health, allowing professionals a greater degree of freedom at work, making changes to the law on mental health and a setting down of some of the questions that face advocacy in the mental health sector today.

My name is Jane and I am a user of Bolton's mental health services.  I have been a user of these services since I had a nervous break down in 1990.  Over this time I have been privy to many aspects of care in the mental health sector and my views on mental health have matured during this time.   As a matter of caution I think it first best to establish my credentials as a thinker.

I have had periods of intense participation within the sector, going to drop-in centres as both client and voluntary worker, holding talks with hospital officials, taking part in therapeutic earnings schemes and giving a talk about advocacy within the mental health sector. I have also had periods like now when I have very little input. My overall opinion of the service, has, along with my illness, become less "passionate" with time, and I consider it now to be largely a matter of luck as to the standard of care you will receive in the mental health sector, dependent on such factors as personal interplay between one's self and the service providers.  Today I have what I call a good relationship with my chief provider, my psychiatrist, one that I have built up over the last eight years and I am now quite stable as far as my disability is concerned and currently taking a degree.  I feel that the insight that having a mental health problem has given me is unique, and as far as trying to define mental health I am in a better position than most.

One in ten is the figure most people quote when trying to put a figure on the occurrences of mental health problems in the population.  Of course it is not easy to separate the different types of mental health problems’, most are a mixture of all, 

For instance it has been said that if you come from a well- to- do background you are more likely to be diagnosed as having manic depression than schizophrenia, and vice versa.  I am not going to tell you my diagnosis. It is sufficient I think, to say that I am a thirty- year- old black woman.  I sometimes worry what the diagnosis is going to mean to me in the future.  As a convenient label with which the professionals can refer to me, I understand its usefulness, but the social stigma that it carries can be very difficult to manage, especially when confronting the general public who are not learned on the matter.

It is created by the media and exacerbated by the historical approach to mental health.  In days gone by we may have been considered to be devil worshippers or possessed of evil spirits.  In any case we were thought to be social deviants who should be locked away at best.  Indeed, people with a mental health problem can still have their freedom taken away from them against their will.  It was because of this and the many other myths surrounding mental health that in 1992 I joined a newly set up group called Bolton Mental Health Support Council.  The group operated as a partnership between carers and users of mental health services.  The aim was to give carers and users a greater say in the running of services in the sector, with the belief that they'd invaluable experience to offer.  I might add that shortly before my nervous breakdown I was studying for a degree in social science. Today I don't believe I could have got a better education in social science than the one I received from social scientists themselves, even if I had completed the course back then.  I have been able to watch with a critical eye my peer group at work and have been sadly disappointed on many occasions.

Bolton Mental Health Support Council was good in that it was the first group of its kind in Bolton, but in my opinion it fell short of its goals and I left the group in 1995.  The group failed to answer some very key issues in mental health and didn't live up to my expectations.  Questions such as, is it possible for someone with a mental health problem to be an advocate?  Should we allow patients to advocate for friends?

Is advocacy a state of conflict? These questions were never satisfactorily answered by the group, unfortunately, and the group has now become a tool for the established order.

When I first became ill I was too ill to be critical of my own private treatment but I was able to observe the treatment of others.  I was shocked to learn that ill people could be forcibly restrained, stripped and injected with drugs under one of the various mental health acts, action one can immediately recognise as not being conducive to health.  I saw a patient sitting in her own faeces on a hospital ward while nurses stood chatting and eating junk food in the staff room (Withington Hospital 1990).  All previous ideas I had of therapy were systematically redefined, such that 

Drugs were handed to patients without any mention of the horrendous side effects that they can produce, side effects comparable to the illness itself.  Time and time again I've learnt that patients have gone without procyclidine, a drug used to counteract the negative side effects of psychoactive drugs, and these patients are usually the least able to ask for it themselves. Young patients new to the system, or patients with learning disabilities are most likely to fall into this category.  I fell into this category once upon a time.

I discovered that after taking psychoactive medication for a while I was becoming very stiff and restless.  The feeling was so bad it seemed the only thing to do would be to come off the medication all together.  Of course this would be unproductive in terms of treating the illness from which I suffer, but it appeared to be the only thing to do, until after confiding in a friend, who was a user and sufferer too, I learnt about procyclidine and immediately sought out my doctor who prescribed it for me.  You may ask, well why didn't you ask the doctor in the first place?  Well, appointments to see a psychiatrist are few and far between. I'm one of the lucky ones, I see my doctors every six weeks and we discuss how I am progressing with the medication and occasionally change it.  At present I have been left with an apparently permanent residual symptom of medication which I can do nothing about, and it won't go away even if I stop taking the medication.

Bolton Mental Health Support Council was supposed to be an independent organisation with the aim of addressing some of the flaws within the mental health service.  I personally hoped for even greater things, such as outlawing the practice of being forced to take medication against your consent, a practice I feel there is no call for if nurses were given better training and had more "life" experience, people can always be talked round to something. I hoped that through the group users would find a louder voice and with the help of carers, who were equally disappointed with the service they had received, create change.  But what happened in the group was no different from what happens in the wider population.  Carers with their better health, and therefore greater strength, gradually took over the group, and, because of their lack of understanding, became ineffective in demanding change.  The service Bolton Mental Health Support Council now offers is largely supplementary to existing services and not very challenging.

One of the big obstacles that can face a person with a mental health problem is the notion of not being ill but being bad.  Mental health problems are often accompanied with extreme and lawless behaviour which can lead to the labelling of a person as bad and dangerous.  This has led to the general population putting mental health sufferers under the same umbrella, not so different an umbrella from the old one and this establishes an approach to mental health that isn't healthy.  It is essential to the recovery of a patient that they do not see themselves in this light.  A mental health problem should be seen as a medical problem and a patient should be treated with the same degree of care and compassion that any other patient should receive.

Therapy should be more widely available to all sufferers, and sufferers not seen to be benefiting from existing services should not be ignored.  These areas should be being better investigated and new approaches developed.  Areas where there needs to be more done are areas such as confronting racism within drop-in centres, catering for single parents with mental health problems, getting services to people instead of expecting people to discover services themselves.  Indeed the whole idea of "services" and "to service" needs to be radically altered.

Therapy is being offered to users in the form of job experience, with the aim that it will improve self esteem, but what is happening is the ill administering to each other without the therapeutic effect of intervention by healthy minded people in a healthy environment.  These jobs are not leading to any long-term real employment, and are make shift.  Ill people should not be made to work for each other but should be properly nursed by trained employees.  Ill people should not have to ask for aid, the aid should be offered in the first stage of suffering and it should be thorough and comprehensive.  Experienced doctors and nurses should not have to second guess the needs of patients, they should know them, and the trauma of having to self advocate when very ill should never be an issue.

Another issue up for debate is the issue of free will.  There exist so many rules and codes of practice at work in the mental health sector that CPNs and social workers no longer seem to be able to be human when dealing with a patient. 

Other ways a patient can feel undermined is by being seen in the reflection of notes and labels rather than as a developing and changing human being.  People can often feel weighed down and held back because of this secret world of files and documents.

Mental health is a difficult area to deal with and most people are happy with a system if it at least maintains some amount of peace and order.  The mentally ill are at the mercy of the mentally well and an assumed normality is implied.  The tool with which the treatment is largely delivered is that of the mind and the interaction of mind with mind is of paramount importance.  If we could instill more love and a greater energy for compassion within the system we would be making a step in the right direction.  Mental health is not such a mystery now as it was and services within the community should be reflecting this.

Further information is available from:

Karen Barton (k.barton@bolton.ac.uk)
Bolton Institute
Chadwick Street
Bolton, BL2 1JW
England