Guideline Recommendations [63]

The following advice is written for people with schizophrenia, and their carers, and will tell you what help, treatment and care you can expect. At this point in time, not all the treatments outlined below are available in all parts of the country. This guideline will help services and health professionals to provide better treatment and care. The first section outlines some issues that are important throughout all stages of the illness.

Care you can expect in all stages

The relationship with professionals

Whatever the stage of illness, it is very important that the professionals who work with you develop a supportive and caring relationship with you. They should be engaging and kind, and work in a constructive partnership with you and, preferably, with your family and/or carers. The effects of schizophrenia on a person’s life experience and opportunities are considerable. Service users and carers need help and support in dealing with their future, and to be able to cope with the changes the illness brings. Professionals should work with you in a partnership and in an atmosphere of hope and optimism.

Getting help early

When you need help, especially if things are going wrong, you can expect help at an early stage. When most people have a breakdown, the level of upset, anxiety and confusion, especially when they first become unwell, can lead to problems in getting proper help.

Sometimes people feel suspicious of friends, relatives and professionals, and their distressed state can alarm others who may respond in a less than helpful way. Many people who are experiencing a breakdown do not agree with others around them about the events or experiences they are having, nor with the explanations other people give. This means that people at the start

of their illness can be misunderstood and they may be vulnerable as a result. Because of this, service users and their relatives seeking help should get the right help, treatment and care as soon as possible.

Full assessment

The first help you receive should be a full assessment. This is to make sure that the treatment and care you are offered are tailored to your particular needs and situation. At the assessment, you should be asked about your symptoms, how happy you are with your life, what your accommodation is like, your social life and how much or little money you have. The staff doing the assessment will also need to ask you about your physical health, your work and your skills. If there are any issues you think are important for you, including things like your culture and religion, tell the staff who should give you the chance to discuss them.

Information about treatments and consent

When you are offered treatments, you should be given as much information as you want about the illness and its treatments before the treatment is started, and treatment should be started only after you have given your consent. The exception is if you have been ‘sectioned’ under the Mental Health Act – this is when you have been detained for assessment and/or treatment against your wishes, for example, because you are too unwell to make decisions. If you have been ‘sectioned’, you can expect as much care and help as anyone else, and that time will be taken to explain what is happening.

The medical language used by doctors and nurses is sometimes very technical and can be confusing and so won’t be used unless it is necessary. You will be given written material to explain things you don’t understand. If you have trouble speaking and/or understanding English, an interpreter should be provided and information given to you in a language you can understand.

Also remember that there are some very supportive voluntary organisations that may be able to help you and your carers at different times, sometimes with information, sometimes with family and carer support programmes.

Choosing treatments and advance directives

There are a number of different treatments for people with schizophrenia – many do the same things but have different side effects. It is important that the treatment you are offered suits you

and doesn’t give you unpleasant side effects. Once you have been ill, your doctors and other healthcare workers should try to help you write down which treatments you most like or dislike so that if you become ill again, professionals will know your preferences.

These written preferences are kept in your GP’s notes and in your psychiatric notes, and are called advance directives. When you make an advance directive, you should have a copy and, if you would like, your team can give a copy to your relative, advocate or carer.