Consultation participants suggested that the amount of information required depends on where carers are in their journey. The onset of mental illness in a family or friend can be a frightening event and even more so if it becomes necessary to involve police in transportation to hospital. Carers reported they were unable to take in a lot of new information at this time and what they were primarily looking for was reassurance that help was now available. Some reported a sense of relief that something had finally happened. Most wanted to be recognised and included in any decisions that were to be made. They wanted to be given some understanding about what would happen from now on and most of all they wanted a specific person to be nominated to maintain contact with them. All agreed they could only absorb information as they were ready for it. However a brochure containing more comprehensive information would be useful to refer back to. Carers reported finding themselves in a state of confusion and fear when recalling their first contact with a mental health service.
Participants suggested services should provide the following information to carers at the admission stage.
- Welcome message, we are here to help, outline of the processes to be followed, preferably including options for a follow up call from a designated person within the service to answer immediate concerns.
- Confidentiality - explanation of legislative requirements and re-assurance regarding options if the consumer is currently refusing in depth involvement
- Prompt questions they may use in seeking information from staff.
- Contact numbers for the hospital, ward
- Legislative status of the consumer - what this means
- Carers rights
- Complaints process
- Some general information about what the symptoms of mental illness might be
- Information as to where they might go to obtain additional information and assistance. Top of page
Some participants also supported the provision of additional information that could be referred to as carers were able to absorb the information. Discussion ranged from including this all in one brochure to development of a total package comprising several brochures. It was also acknowledged that a lot of information already exists from Carers Australia however people generally need time to recognize themselves as a 'carer' so it may not be the first avenue accessed when looking for information.
It was also acknowledged that some excellent diagnosis specific information has been prepared by the RANZCP. It may, however, take a number of admissions before a specific diagnosis is agreed and everyone is willing to accept and come to terms with what this actually means. It was reported to us that in the first instance family and friends are more concerned about:
- How they (carers) should behave when their family member returns home
- What can they expect from the person with the mental illness?
- Will they ever be like they were before? and
- What is the medication and does it have any side effects. Top of page
- Provide an introduction to the mental health service, explaining the processes that would be followed;
- Provide some general information about what the symptoms of mental illness might be;
- Outline in question and answer form some of the concerns they may have;
- Provide examples using the stories of family members and friends to assist them to feel less alone;
- Introduce the new language, eg 'consumer', 'carer'.
- Introduce the concept of carers rights and complaints processes;
- Introduce the issues associated with the consumers rights to confidentiality and what this might mean for the sharing of information; and
- Provide information on where to go for additional information and support.
Participants also re-iterated the importance of having a nominated person/Carer Consultant/Family Support Worker on staff, with whom they could personally interact, discuss and clarify information needs as required and generally use as a point of contact for future needs.