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National Voices Forum Report of
1998 Conference on Self-Management of Schizophrenia
(Tuesday 10th February 1998, Birmingham)

CONTENTS page

(1) Presentation by Professor Alec Jenner ........................... 1

(2) Presentation by Amy Ford (National Secretary)
"What is Self-Management?" .................................... 2

(3) Questions to speakers .......................................... ....... 4

(4) WORKSHOPS ......................................................... 6
a - Self-medication
b - Coping with hallucinations and delusions
c - General
d - Non-medical coping methods
e - Negative Symptoms e.g. lethargy and apathy

(5) General discussion and feedback ................................... 10


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(1) Talk by Professor Alec Jenner


Schizophrenia is not one thing - it's important to treat people as individuals. Generally there is a problem distinguishing the self from the non-self. Voices can be a kind of projection. But no one theory of schizophrenia is valid.

Sufferers need respect, and like other people, are concerned with how others view them. Sometimes the person is trying to go it alone - like dangerously separating from a caravan in the desert.

The commonest cause of being sectioned is refusing to comply with medication. Drugs are not the central issue, though. The central issue is helping people integrate their lives. There are better ways of helping people than just using drugs, but these require a lot of time and effort on both sides. Alternative treatments should be encouraged. People should be told what is known about drugs, including controversies and side-effects. It is not possible for psychiatry to manage without them.

Psychiatrists should aim to involve patients fully in decisions about choice of drugs and dosages. They should help the patient to manage the drugs themselves. Advocates can play a role as arbiters between patients and medical compulsion.

There is no time to go into all the aspects of schizophrenia, but, in summary, there should be full information, not obscuring the negative effects of drugs, and full discussion with the patient. Self-medication and self-management should be the aims and slogans of the system.


(2) What is Self-Management?

Talk by Amy Ford (National Secretary)

Introduction

We have all gathered here today with hope and a common purpose: to improve our mental health and quality of life. As adults, we seek respect from others in this modern society and independence of choice over our own lives. However, this rarely happens. In fact, in many ways psychiatry actually works against these basic human rights. The psychiatric system often disempowers people to such an extent that people can feel that their own ideas are worthless and their instinctive free will is thwarted at every turn.

Of course, when people are acutely ill they may need a certain amount of decision-making done for them. This is because insight in general may be lacking, someone may be ill-informed, or overwhelmingly negative in attitude, or they may not be in touch with reality, etc etc. However, once some measure of stabilisation is obtained and more knowledge is acquired, people should be encouraged to take an increasing degree of responsibility for their own mental health.

Disempowerment in the Psychiatric System

As mentioned before, the psychiatric system can often work against the principles of self-management. In my opinion, there are several ways in which psychiatry does this.

(a) Control - The controlling type of personality and style of so-called treatment by many mental health professionals is one culprit. You are made to feel that you are second best to them and that their ideas of what is best are sacrosanct.

(b) Knowledge - A significant proportion of service users are still ill-informed about their own illness, during it and after stabilisation. However, although professionals have much knowledge about particular illnesses, this is often not disclosed to their patients. One example is to not tell service users about the side-effects of drugs.

(c) Dehumanisation - In general, psychiatry is very dehumanising and can create lack of confidence and low self-esteem in people, quite apart from their actual illness. The reason for this is that there is a general negative culture within the psychiatric profession that communicates to users verbally and non-verbally. The system is very impersonal and people with mental illness are made to feel like lesser human beings by those who are supposed to be there to help them.

(d) Lack of Relationships - Some service users lack strong relationships amongst so-called "normal" people and other service users. Consequently, such people may have no-one to "fight their corner" or advocate for them in an indifferent system.

(e) Lack of Resources - Finally, is has to be said that there is a chronic lack of resources in psychiatry, although this is NOT an excuse for its dehumanising attitudes. However, since there is a lack of money, the kind of personally tailored service to suit every user's complex needs doesn't exist, and probably never will. Therefore, much of the task of getting well is up to the user themselves.

Principles of Self-Management

It is important to note that we are all different and what works for one person may be useless for another. Therefore, one has to discover one's own ways of improving. Also, it may take many years to become really good at it. But just starting is important: changing the attitude of "passing the buck" and taking the decision to take as full a role as possible in one's own treatment. Set yourself a different course with renewed hope. One thing that is important to remember is that there's much more to treating schizophrenia than just taking drugs - although I'm sure the drug companies would beg to differ!

Examples of self-management are: increasing your medication if you begin to feel a bit ill, monitoring your progress by writing a diary, going walking if you're angry or agitated, talking to someone close to you if you're depressed, spending some quiet time alone if you've had a hectic day, practising regular relaxation if you often get anxious, planning stress-provoking events at good intervals, learning more about your illness and psychiatry. The list is endless.

Today

So, today, enjoy yourselves, make new friends, exchange ideas and experiences, but most of all, take away with you a new spirit of hope that YOU like many others, can make a difference to your life, and you can do it yourself. "D I Y" can also lead to much increased self-esteem, confidence and satisfaction in life. You know yourself best - go out there and prove it to the professionals and WIN!



(3) Question and Answer Session with the Speakers


Was the paradigm of psychiatry widening from genetics and biochemistry to include social, interpersonal, and other factors in its concept of mental illness?

Prof Jenner cited the history of psychiatry as encouraging optimism, saying there had been progress since the time he came into it. He said that though scientific bodies were powerful, and would influence psychiatry in the future, other factors were not totally ignored. It said something about the psychiatrist which school of thought he chose to support.

It was much easier to give out drugs than to listen to someone for years. Though there were strong forces in genetics and molecular biology, he refused to be pessimistic.

Did Prof Jenner think that illicit drugs could cause schizophrenia?

He said that the effects of amphetamines were difficult to distinguish from schizophrenia. Schizophrenia could also be brought on by physical illness.

He was asked if people suffering from schizophrenia had to take drugs for the rest of their lives. He pointed out that people got better before there were drugs. There was a view that the drugs indicated the biochemistry of schizophrenia, but that was a hypothesis. If coming off the drugs it was important to do it slowly. There was no reason to suppose that one would necessarily take the drugs for life.

Prof Jenner was asked for his views on ECT.

He said that, though he had been against abolishing it, in practice he had never used it. If someone was so profoundly depressed that it looked like they were going to die, there might be nothing else that could be done. He considered that its use should be severely restricted. He compared having agreed to a leucotomy being performed on a doctor whose life was in tatters. She went on to get a higher qualification in medicine.

On another occasion, he was pressured by nurses to give ECT on a compulsory basis, and while the order for it was being processed the patient suddenly recovered.

Was there any research on the side-effects of the major tranquillisers, especially haloperidol?

Prof Jenner said there was a lot. In his view, the toxic effects of haloperidol had been over-stated by one writer. Whether the medical profession took sufficient notice of the research was, though, open to doubt. However, tardive dyskinesia and an increase in heart attacks were well documented. The human body was such that there are almost always unwanted side-effects to drugs - if you do one thing to it, you generally get something you don't want as well. Perhaps it would be better to do research on how the giving of haloperidol could be avoided.


What did Prof Jenner think of complementary therapies?

He replied that these were extremely numerous, some of which might help. It was important to be open-minded about them, but difficult to be scientific. He would never stop anyone using them, but he admitted to being rather sceptical. More research would be helpful.

Were there any dangers in suddenly stopping Stelazine and going on to a newer drug like Sulpiride?

Prof Jenner said it was OK to go on to an equivalent dose of another drug like sulpiride.
If someone had suffered from schizophrenia, would he encourage him or her to come off medication if they were functioning normally?

If someone appeared well, one did not know if this was just because of the medication. Perhaps every 2-3 years, gradual reduction should be attempted. It was better to live without drugs if possible. "Illness" might not be an appropriate term in psychiatry, since it suggests there is some internal problem that cannot be put right. Things should be discussed to try to find out the causes of problems. If things are going well, and circumstances are favourable in someone's life, there is every reason to try to come off drugs.

Chris and Amy asked if they felt that self-management for schizophrenia was imminent or were there special problems with it?

Chris was confident about self-management for schizophrenia, and said that we might find out from today's discussions if it differed from self-management for manic-depression. Amy called for more research into the causes of schizophrenia. She wondered if more people could come off drugs if the causes were attended to. She believed that social, family and other environmental causes should be researched. There was little work done on this compared with that on physical treatments.



(4) WORKSHOPS

a) Self-medication

It was pointed out that this is difficult if you are on depot injections, where you may not even be sure what dosages you are receiving. It helps if your doctor agrees to you being on tablets. Then you know exactly what you are taking, and are in a position to change the number of tablets you take - up or down. Some people felt that self-medication was important so that you could increase your tablets if you started to feel high, confused, or stressed.

Others felt the main argument for it was to give you the chance to reduce your medication if and when you were sure that you were you were getting well and able to cope with less. People knew of friends who had come off medication of their own accord and survived. But other people had found they needed to stay on medication longer.

Most people agreed that it was important, wherever possible, to gain the consent of your psychiatrist or GP to reducing medication, and to pursue it in consultation with them.


b) Coping with Delusions and Hallucinations

Sometimes people could feel worse on medication than off it. One person preferred hearing voices to the drugs.

Relaxation, taking a bath, television, and so on, could take the mind off voices. Voices could be thoughts transformed into sounds by the brain. People sometimes want to talk about their experiences and receive psychotherapy or counselling. They feel the medical profession can just brush them off and try and distance them from their voices. It was usually socially unacceptable to talk about voices.

Possible causes of mental health problems were divorce, illicit drugs and personal relationships. Lots of money was spent on drug therapy, but very little on other forms of therapy which address the possible environmental influences.


c) General

One or two of the five people in the group reported that psychiatric medication, such as depixol or chlorpromazine had helped them to calm them down when their minds had become over-active. However, one person, who was a painter, found that medication dampened creativity.

One person argued the case for good nutrition, for example by taking vitamins and mineral supplements. It was remarked that many people go into hospital under-nourished. The case was also made for physiotherapy and massage. The negative side of medication was lethargy and lack of motivation. One person said they tried not to think about reported "brain damage" since the drugs worked for them.

Finally, financial security was stressed as important to mental health, for example through receiving DLA.


d) Non-Medical Coping Methods

facilitated by Someone-Or-Other and Peter Cridland

It was felt that drugs should not be the central issue in a person's life and better integration between drugs and other methods of controlling the illness was needed. Where participants had practised both methods, it was found to have worked for them. It was felt strongly that people can and do get better without just the drugs they are prescribed.

However, as a caution, it was also said that no-one should take this as carte blanche to immediately stop following a prescribed regime of drugs, as the side-effects of stopping drugs immediately might in some cases be dangerous. It was recommended only to reduce medications slowly and with co-operation and advice from a psychiatrist. (After all, if you don't tell them what you're up to and things go wrong, it might get a bit awkward later on!)

Some in the group thought that certain legitimate alternative therapies might prove helpful when used in conjunction with medication. However, one or two felt they would rather have just the alternative therapies, and complained that these were not generally available on the NHS. Also, you have to pay if you go privately to someone, which few of us can afford on state benefits.

A recurring theme in the group was that of control over voices/illness, and being able to limit the intrusion of voices into thoughts and everyday activities.

Next to the above point was knowledge. Without knowledge of what is what, how could you hope to control or regulate your illness in the first place? Some information seemed to be available, though rather patchy and sometimes inappropriate, but it has improved of late. (MIND, it was said, produced some useful publications, one of which was called "Accepting Voices").

Knowledge is useful, but the ability to use knowledge effectively is not so straightforward. This was because the mental health system, it was suggested, was still rather impersonal and dehumanising. This could cause loss of self-worth and self-confidence, and low self-esteem. These are negatives which reinforce each other, and it was observed, may lead to a "self-fulfilling prophecy" cycle of events. A person's thinking may be affected and thus ruin a real chance for improvement.

It was important to observe the illness: good days, not so good days, and the various symptoms you may be experiencing. One useful suggestion was to keep a diary of the illness. With this knowledge comes the power, it was said, to be effective in regulating the voices.


Loneliness affected some people: lack of a partner or of love and support at home. Being a service user and sufferer, whether past or present, does wonders for your relationship life - "Like hell!" Once you've been diagnosed or been in hospital, it seems your chances of meeting worthwhile partners or finding affection are, to say the least, severely limited. There are of course exceptions to this when people have formed very successful relationships. However, in these cases there are often several "positives" in place, eg.security, love, support, or other "non-system" help, which has provided the environment for this to happen. I think that must mean "Normality!"

Relationships are very important to many people and there is no quick fix for getting one, once you've suffered schizophrenia or similar illness. Some found affection amongst fellow sufferers, but others were not so lucky. This seems to be an issue that won't quietly go away, and affects numerous people. It is important for people to believe in you, and give you something to go for again in life. And to believe that you still can accomplish things, and that illness does not have to be the end of everything!

The benefits of talking were mentioned. If you have someone you can speak to, find some comfort with, a shoulder to cry on, or some form of regular positive social contact, this can help your sense of well-being. This can build into other things, once you are exposed to "positives" often enough. Loneliness and isolation do not help at all!

Relaxation was mentioned as beneficial. One way to relax was to play a cassette of restful music and ensure that you are not disturbed. Also, you can practise helpful exercises which relieve your mind and body of stress. Some Community Psychiatric Nurses have access to these types of therapies, as well as some hospital Occupational Therapy departments. You can also buy these tapes in specialist shops. However, make sure that your material does not come form a source which promotes strange beliefs, religious ideas, or social changes, as what is needed is stability.

Peace and quiet can help, as long as you do not have too much of it and become lonely. Keeping a planned slot in your day to look back on what you have accomplished can give encouragement. It can be very helpful to pin to a cork notice board what you have done that day, as visual proof that you are doing something with your time. Certainly, setting a time when you can relax, listen to music or read, or do what you like doing, can be both stimulating and helpful.

Learning more about your illness and psychiatry can help you cope better. There are excellent books and other literature on mental illness, such as magazines like "Open Mind" (from national MIND). Literature can be obtained from libraries or from high street shops.

Much of the effort of getting well is up to oneself, the service user. It is important not to be afraid to set yourself an independent course to make yourself well, or at least control the illness, and buy back your life and - to not see yourself as merely a patient for whom there is no good prognosis or future. PEOPLE CAN AND DO GET BETTER. Let this not be forgotten. No-one says it is easy, but it is definitely worth it in the end!


e) Negative Symptoms e.g. Lack of motivation and energy/depression/apathy
facilitated by Keith Bishop and Mick Nicklen

After a general discussion and initial introductions the following negative symptoms were identified as being most common within those present:

(i) Sleep patterns
(ii) Lack of confidence
(iii) Apathy - lack of motivation
(iv) "Paranoia"
(v) Anxiety states

Because of time, each problem - and possible remedies - was discussed only briefly. However, it was felt that a full day conference on negative symptoms and remedies could be considered for the future.

(i) Sleep patterns - Problems identified with both lack of beneficial sleep and a complete reversal of sleep pattern - being awake all night and asleep all day.
Suggestions - Herbal sleeping pills, not going to bed hungry, getting involved in some form of therapeutic work, getting a friend to call on you at the same time each morning, getting a pet (make oneself tired walking etc), giving oneself a reason to get out of bed by using any of the above.

(ii) Lack of confidence -
Suggestions - Face every problem head on - one delegate overcame his speech stammer by joining his local speaking forum.

(iii) Apathy - lack of motivation - The main concern of the majority of delegates was being labelled as "LAZY". However, most felt that apathy was a basic symptom of the illness and side-effects of medication.
Suggestions - Again the general emphasis was to get oneself a routine, join other groups, seek part-time employment which doesn't affect benefit (e.g."therapeutic earnings"), give oneself a goal or target - save for a holiday, etc.

(iv) "Paranoia" - It was generally felt that this again was due to the sensitive nature of the individuals' illness.
Suggestions - It was felt that people who suffer "paranoia" tend to be very artistic and perceptive, so that it can be reversed and used as a more positive symptom.

(v) Anxiety states - All the delegates had suffered from this at some stage.
Suggestions - Blowing into a paper bag (to reduce the oxygen intake), swimming and walking, writing a diary of dates and times of anxiety to establish patterns.

SUMMARY
It was felt that the majority of the above symptoms could be helped by talking to fellow sufferers. Don't isolate oneself, use the facilities of local Voices or other groups, and feel free to discuss anything in confidence. The majority of delegates were surprised that other people had suffered as they have done. Share one's remedies and we'll all make it.

(5) General Discussion and feedback

The difficulty was highlighted of distinguishing between negative symptoms and the depression/apathy caused by neuroleptics. A case of someone committing suicide rather than going back on them was mentioned. It was good to try to keep to low doses and take exercise. One person mentioned the problem of trying to get their psychiatrist to change their medication to a newer drug. When they were eventually successful, the drug was found to be less depressing.

Professor Jenner was asked how service-user's views were regarded by psychiatrists. He felt that users' views should be listened to and a general dialogue between users and psychiatrists should exist.

The death of Orville Blackwood in Broadmoor due to overprescribing was raised, along with the problems his mother had had in seeking redress. Prof Jenner said that any prescribing over the BNF recommended maximum doses was legally the responsibility of the psychiatrist concerned.


Poster Competition

EJ Waldron was announced as the winner of the prize for best poster on the day's theme.