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History – the ARAFMI Story in the Illawarra

In the early 1970’s in New South Wales, mental health was an area of dire need. This was recognised by staff of psychiatric services at all levels. It was becoming clear that institutional care was not necessarily the best option for people suffering from mental illness.

The needs of families of people with mental illness were, however, not recognised as vital to the holistic treatment of serious mental illness even though it was often the families who were the mainstay for their sick relatives. Families were often left feeling that they had nowhere to turn, and that they were to blame. In those days little was done to reassure families that their feeling was a normal part of the process of dealing with mental illness.

Similarly, there was a little recognition of the stresses that families experience, or of the practical and emotional hardships imposed on the family by mental illness. Families were also extremely concerned at the lack of services available for the mentally ill.

In August 1974, Margaret Lukes (the then social worker in the Advisory Service of the NSW Association for Mental Health in Sydney) drew together a small group of relatives of people with a mental illness to consider the following questions: “Is it really a problem area? And if so, what is it and why?” and “What can we do about it?”. From these meetings, the idea of a seminar was conceived. The seminar was held in 28 February 1975 entitled “Mental Illness and the Distress of the Family”. It was attended by 228 people, two thirds of whom were professionals. It became clear that this was indeed a problem area for all carers, be they professionals or family members. As a direct result of this seminar, ARAFMI was formed in March 1975.

From this beginning, the ARAFMI organisation grew to include branches of the original group.

Prior to the formation of ARAFMI in the Illawarra Area, there had been meetings in November and December 1981 of the Mental Health Committee concerned with the lack of adequate psychiatric services in the Illawarra. The Curtailing of what little was available was causing great worry to the people most intimately involved – the people caring for a family member of their family with a psychiatric disorder.

Discussions were held on what facilities were available for the mentally ill, with emphasis on what was not available. It was found that the Illawarra was disastrously short of everything.

Notices were sent out to the public aimed at the relatives of people with mental illness asking “had they heard of the NSW Association for Mental Health, and of ARAFMI?”, along with invitations to come and hear Margaret Lukes and Kennie Dare from these organisations. Subsequently, at the Wesley Centre, Crown Street, Wollongong, on 30th March 1982, the Illawarra Branch of ARAFMI was formed with a committee of three. By July 1982, there were 39 members.

In August 1982, it was noted that the community health services were at the lowest level for five years. It was emphasised that the community must exert pressure for Illawarra to receive its fair share of health services. Letters were sent to all state Members of Parliament from the Illawarra indicating the poor facilities for mental health and illness in the Illawarra late in 1982.

An approach was made to the Regional Director of Health, Dr W Lawrence for a social worker, as well as an application under the Commonwealth Employment Plan; but both proved unsuccessful. Despite periodic correspondence with the Regional Director and the Minister for Health little was achieved other than the substantial improvements of 12 more beds for ward 20 in Wollongong Hospital and 28 beds in the new Shellharbour Hospital.

Work with the Richmond Inquiry and Report was substantial. Illawarra ARAFMI was represented at four meetings, and sent written submissions.

During 1983-84, ARAFMI had considerable newspaper coverage, such as a full-page feature article about “the Lonely Illness”. There was heavy front page news about the local Psychiatric Unit, ward 20, being near collapse with the resignation of the only doctor with psychiatric experience. It was pointed out that three staff psychiatrists were needed urgently to serve a population of 300,000. There were also two newspaper articles in the local paper by members of Illawarra ARAFMI, as well as letters to the editor. A stall at Shellharbour Square in July gained some publicity as well as boosting ARAFMI’s finances, as did a white elephant stall conducted in September.

Notification came to us of the opening of the Community Health Centre in Sperry Street, Wollongong – something along the lines for which ARAFMI had been pressing. This centre was staffed by a Psychiatrist, a social worker, and psychiatric nurses. This team became ARAFMI’s ally, and was to support ARAFMI through some particularly rough times.

The battle for adequate, equitable and fair services for the people with mental illness and their families continued; and over the next few years ARAFMI was to see the implementation of the Richmond Report, (in part) the advent of the Industrial Therapy Unit, an increase in staffing levels, the Shellharbour Psychiatric Unit, the move of Ward 20 from its old premises to become the Wollongong Acute Psychiatric Unit, and Lakeview House Rehabilitation, as well as doctors’ training program.

Now more than ever it is vital for ARAFMI to maintain its commitment to service development, both inpatient and community based. To this end, ARAFMI has representation on a number of local, state and federal bodies: the Illawarra Psychiatric Community Consultative Committee, the Mental Health Coordinating Council, ANI Australia and to others to ensure community input in the implementation of the various legislations, policies and programs for people with mental illness.

As well, ARAFMI continues to monitor government policies regarding mental illness. This monitoring is done at local and state levels of the ARAFMI service.

In 1985, ARAFMI Illawarra successfully applied for six months funding from the Illawarra Handicapped Persons Trust to employ and administration / Family Support Worker. This funding was extended for a further six months. In 1986, another successful funding was extended for a further six months. In 1986, another successful funding application was made to the Richmond Innovative Grants Program for a welfare / recreation officer. This program ran for a year and involved providing activity based services for both the sufferers and the family members alike. In 1987 funding was recieved from the State Department of Health NGO Grant Program, and the position of the family support worker was created which continues to the present time. In 1998-99 several smaller grants were sought successfully for one off projects.

ARAFMI Illawarra currently has a part time coordinator and a part time support worker. It runs a carer support group each Thursday evening and day support group twice a month. Through these groups we offer a mixture of caring and sharing, education, community awareness and carer outings.

ARAFMI also provides carers the opportunity to gain training in relevant areas that may meet they need as a carer, this includes personality disorder training, Mental Health First Aid and Suicide prevention training, carer coping skills workshops to name a few.

Much of the role of ARAFMI workers is to resource it’s members, the public and all interested people as much as possible, and to provide a comprehensive information and referral service.

ARAFMI currently offers the following services:

• Carer Support Groups

• Education

• Mental Health lending library

• Information and Referrals

• Individual support sessions

• Newsletters

• Informal and formal networking

• Advocacy

ARAFMI believes that families can be a vital resource in the care of people with a mental illness, considering that 2/3 of people suffering from mental illness resides with their families.

Families have traditionally been – and remain – the primary carers for people with a mental illness; but at times such care places a severe burden on families who have their own needs and whose entire function cannot surround the care and maintenance of one member.

Yet this is the reality for many families. As a direct result, families are often perceived as angry, uncooperative or frustrated. Such perceptions are likely to be accurate; the effect of constant stress on families is often that the family as a unit feels eroded from the inside out.

The role of support groups has necessarily become one of mutual caring and support, as well as a forum for the exchange of ideas, information and coping strategies, which allows families (often in crisis) to draw on the expertise, caring and support of others who know how it feels. This type of support has become a vital cornerstone for many ARAFMI members over the years.

While families acknowledge the importance of professional input in the care of people with mental illness, some families report low levels of satisfaction when dealing with health professionals. Families’ already feeling guilt and responsibility for the mental illness have often had those feelings reinforced by some professionals who may project assumptions of dysfunctional family interaction by innuendo. Families may also feel generally excluded from treatment or rehabilitation programs which may undermine their confidence and ability to make decisions.

Despite these occasional feelings, families must obviously seek professional help. In the past few years there have been numerous successful attempts in this region by both professionals and families to bridge the gap between these two forms of care.

On the 20th August 2000 Arafmi moved into Atchison Street the move was in conjunction with Illawarra Community Mental Health upstairs. The move was from Douglas Street Wollongong. ISLHD in kind has always given ARAFMI Illawarra free accommodation within the mental health service. This has always been a great assistance to the organisation, being a charity but creates a barrier for our organisation’s ability to expand as our current funding does not contain a component to cover rent or overheads.