Some background

The Schizophrenia Fellowship of NSW Inc. commenced with a public meeting held at the Seymour Centre in 1985. This meeting was the direct result of consumers and carers identifying the need for:

• more information;
• more service provision in the community;
• a unifying of isolated individuals and families for mutual support;
• an avenue for input into government policy making; and
• a central point for addressing misperceptions and misunderstandings

Approximately three hundred people attended this meeting. Of critical importance at this time was the fact that Simon Champ stood and identified himself as a person with schizophrenia and spoke of his needs and directions. This led others with the illness following suit.

The scene was set for the future development of the Fellowship of New South Wales. From this time on, the Fellowship has had people with schizophrenia involved at all levels of decision making, leadership, consultation and the general work of the organisation. Indeed it is the policy of the SFNSW that at least three positions on the State Management Committee of twelve must be filled by people with schizophrenia. Currently five of the twelve members of the Management Committee have personal experience of mental illness and five are carers of a person with a mental illness.

In 1986, SFNSW was incorporated and a Management Committee was established. The first Support Groups followed quickly. 1988 saw the first funding for the organisation when Peter Anderson, the then State Minister for Health, provided a grant of $26,000 for the employment of one staff person and the running of the office. In 1991, the Fellowship employed a second worker from funds that it had raised itself in order to meet the ever increasing demands for information, assistance and advocacy, as well as the growing burden of administering its Support Groups and large number of volunteers.

A critical element of the Fellowship is the Support Groups. SFNSW currently runs twenty Support Groups and a further ten associated Support Groups. All Support Groups, whether run directly by the Fellowship or associated, have access to group leader support and training and receive regular newsletters and information updates from the Fellowship. The Fellowship has chosen to have area-based support groups which are reasonably sized, rather than many smaller groups in each suburb. Being larger, these groups have greater viability, are easier to support and are able to address the issues relating to its particular area health service.

During Mental Health Week 1991 the Fellowship launched its first non-English speaking Support Group. This group serves the Italian speaking community. The Fellowship also established a Greek speaking Support Group in 1993, NOUS, in partnership with members of the Greek community and bi-lingual workers. This group has over 250 families as members. In partnership with NOUS, the Fellowship has established its first housing program. Accommodation is provided for six people of Greek cultural or language background.

In 1995 the SFNSW launched the first Clubhouse in NSW based on the Fountain House model in New York. Pioneer Clubhouse is situated in Balgowlah and has over 350 members with daily attendances of approximately 50 people. A second Clubhouse was established in Tamworth in 1998. This Clubhouse was funded by the Commonwealth for its first year of operation and is now a very successful, separately incorporated local service.

An area of major importance over the last two years has been the development of clinical practice guidelines for the NSW Department of Health. These guidelines have been developed in a spirit of cooperation between consumers, carers, mental health professionals, researchers and non-government organisations.

The Fellowship's commitment to the provision of information and support has been furthered through the establishment of its web site. This page has been highly successful with close to 120,000 hits per month. The web site contains comprehensive information on schizophrenia, as well as access to discussion forums and Q&A facilities. It consists of approximately one hundred pages and is updated weekly.

The Fellowship must rely heavily on charitable donations and volunteers to address the identified needs of the community and the extra requests that it receives. SFNSW currently has over 220 regular volunteers who between them contribute the equivalent of 25 full-time positions. Without these volunteers we could not operate our Telephone Information and Referral Service, produce our bi-monthly newsletter and provide the level of advocacy that we currently do provide.

The Fellowship has in excess of 4,500 memberships but serves many more people through the Telephone Information and Referral Service (which deals with approximately 3,500 calls per year), Support Groups, Clubhouses, our partnership in the Parramatta Leisure Club, our prison service based at the Forensic Unit at Long Bay Goal, our school education program operated by Kerrie and Sean McArdle which addressed over 15,000 children in 1999-2000, our tertiary education programme, the Siblink program for brothers and sisters of people with schizophrenia, our bi-monthly newsletter, our Schizophrenia Awareness Week program and other services. Many of these services are completely unfunded.

The Fellowship also established in 1991 an annual Art Competition and Showing for people with schizophrenia and an annual Poetry Competition. There is also an annual Symposium which looks at the latest research in the area of schizophrenia. Symposium 2001 focused on the criminal justice system which has become a major area of work for the Fellowship.

The Fellowship has established the Schizophrenia Research Trust Fund which awards small grants on a regular basis. It is worth noting that the Neuroscience Institute for Schizophrenia and Allied Disorders (NISAD) commenced life as a subcommittee of the Fellowship.

The Fellowship is attempting to address rural and remote issues. This has been partially accomplished through partnerships with organisations operating in these areas, hence the growth in associated support groups over recent times. We were involved in a satellite broadcast funded by the Commonwealth Department of Health and Aged Care to rural and remote mental health services and general practitioners regarding the treatment of schizophrenia. The Fellowship has established a staffed program in the Hunter Area and is in the process of developing a similar programme in the Greater Murray Area. We are also establishing a pilot programme in four areas which will provide information, support and advocacy for carers under the Caring for Carers program.

The Fellowship's motto "Succeeding together" will continue to be a driving force for future activities.