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You are being invited to take part in this study. Before you decide whether to take part it is important that you understand why this study is being done and what it will involve. Please take time to read the following information carefully and discuss it with your keyworker or carer. Please ask if there is anything that is not clear, or you would like more information. Take time to decide whether or not you wish to take part. Thank you for taking the time to read this information sheet.

What is the purpose of the study?

The aim of the study is to improve the care of people with a diagnosis of schizophrenia. This study is taking place at a time when National Standards for schizophrenia have been introduced in Scotland. These set out guidelines for mental health services to follow, when providing care and treatment for people with schizophrenia. This study aims to measure the impact of care on outcomes for patients by involving the people who use the mental health services.

Why have I been chosen?

As a patient at a study centre, you have been chosen at random to participate in the study. Approximately 2000 patients from across Scotland will be asked to participate.

Do I have to take part?

It is up to you to decide whether or not to take part. If you decide to take part you will be given this information sheet to keep along with a copy of a consent form, which you will be asked to sign. If you decide to take part, you are free to withdraw at any time and without giving a reason. If you decide not to take part, or decide to take part and then withdraw, this will not affect the standard of care that you receive.

What will happen to me if I take part?

You will be asked to complete a questionnaire along with your keyworker. You will then be asked to complete the same questionnaire 12 months and 24 months later. You may decline to answer any question, in any of the questionnaires, without giving a reason.

What are the questionnaires about?

The questions you will be asked to complete in the questionnaires will help us to understand your personal needs in many aspects of your life such as: physical, social, behaviour, access and mental health needs. These questionnaires should normally take no more than 30 minutes to complete and your keyworker will be able to help you fill them in.

Will taking part in the study cost me anything?

There will be no cost to you taking part and you will not be asked to visit your keyworker or GP any more often than for your usual treatment plan.

What are the possible benefits of taking part?

The information you provide will of course be shared with your keyworker and there may be benefits to the care you receive as a result of this information. However, this cannot be guaranteed. The information we get from this study may improve the treatment of future patients with schizophrenia.

What if I have concerns about the study?

You will continue to receive your normal care throughout the duration of this study. Your keyworker will be involved throughout the study period and will be able to answer any concerns you have. Alternatively, you may contact Rosie Cameron, who is the Project Co-ordinator, by telephoning 0141 211 3582 to discuss any concerns you may have. Regardless of this, if you wish to complain, or have any concerns about any aspect of the way you have been approached or treated during the course of this study, the normal National Health Service complaints mechanisms are available to you.

Will my taking part in this study be kept confidential?

Health professionals currently involved in your care, including your G.P., will be informed that you are taking part in the study. We may wish to link information collected in this study to other health information on you e.g. hospital admissions. However, all information collected about you during the course of this study will be kept strictly secure and confidential.

Who is organising and funding the study?

Dr Robert Hunter, Consultant Psychiatrist, Research and Development Director for Greater Glasgow Primary Care NHS Trust, is organising the study. The study is being funded by a grant from the Clinical Resource and Audit Group (CRAG) of the Scottish Health Department in Edinburgh.

What will happen to the results of the study?

When the study is finished (in 2005) a report will be written which will be published in a medical journal. No individual patient will be identified in any report. Copies of a report on the study will be available from your keyworker.

Who has reviewed the study?

As well as mental health professionals, both the Scottish Association for Mental Health (SAMH) and the National Schizophrenia Fellowship (NSF) have reviewed the study.

Contact for further information

Rosie Cameron, National Project Co-ordinator, Research and Development Directorate, Gartnavel Royal Hospital, 1055 Great Western Road, Glasgow, G12 0XH. Telephone: 0141 211 3582.

Thank you for taking the time to read this information sheet.

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Last Updated : 17 July 2003