Carers matter : getting involved - dealing with the system
This fact sheet explores some concerns commonly raised by carers of a person with a mental illness when they are dealing with Mental Health service providers and professionals.
Below are some problems often confronted by families:
Nobody told us what was happening
Families are often frustrated that they are not given clear information early in the treatment. It is a difficult time for the family who have struggled to get the person into treatment and then get little information about what is happening.
Response:
Both the person who is unwell and the family (with the person's permission), should be given whatever information is available about the diagnosis and treatment at all stages of the assessment / treatment process. This information needs to be given free of jargon in a way that people can understand. If family members have questions they should approach treatment staff directly or ask for an appointment with the person's doctor.
Staff say that the details of treatment are confidential
As a general rule the details of diagnosis and treatment are confidential. This means that the staff cannot talk about these with the family unless the client agrees to this. Since the support and understanding of the family is critical to the success of long term care of the person, most treatment staff will want to share this information with the family. If the person is adamant that the staff are not to divulge information, this is frustrating and recognised as a hindrance to optimal care, but staff cannot provide specific information. However more general information may be given which may be helpful to the family.
Response:
If staff tell you that they cannot give out any information because of confidentiality, advise staff that you understand that specific information about the person you care for cannot be divulged, but ask what general information about the illness or supports or other general information they can give to enable you to provide the best possible care. Families should approach the doctor responsible for the person's treatment and ask for the information needed. If this is unhelpful, the social worker, nurses etc on the team may be able to provide it. Continue to ask staff if the ill person has changed their mind about giving information as they may change their mind as symptoms subside, or staff may be able to negotiate with the person to allow some specific pieces of information that may be beneficial. Remember that staff cannot divulge information, but families or others can give information to treating staff if they have concerns.
Staff are not listening to what I have to say
Families sometimes complain that their concerns are not being listened to or taken into account, or the concerns are not getting to the person they want the information to go to.
Response:
Put your concerns in writing. Send a copy to the treating doctor, a copy to the case manager if in the community or primary nurse (the nurse responsible for a particular person while they are an inpatient) if in hospital, and a copy to the Team Leader in the community or the Nurse Unit Manager (NUM) if they are in hospital. Keep a copy of the letter yourself. In the letter outline your concerns and the reasons that you have them and ask that someone call you to discuss the concerns further.
Feeling blamed
Families have sometimes felt blamed by treatment staff for the clients' illness. Families are entitled to be treated respectfully at all times. Good staff will be able to respond to the needs of families for support and encouragement. There can be no excuses for rudeness or disrespect.
Response:
Share with others your concern about being blamed or treated rudely. You may like to make a complaint in writing to a senior person in your mental health service.
I am not happy with what has happened or is happening.
Sometimes families want to make a complaint about some aspect of the treatment of themselves or their relative or friend but are unsure how to go about this or think that it would be a waste of time. It is important to realize that without feedback the staff or service may not recognise that a problem exists. With feedback, the staff can better understand the problems and work towards correcting them. Alternately, sometimes something has been done for a good reason but nobody has adequately explained the reasons to you.
Response:
If you are unhappy, the first person to talk to is the person who caused you to feel this way. Phone or make an appointment to see them. Explain what you are unhappy about and listen to any reasons they have for what had happened. Please try to remain calm in your discussions with people as people can hear and take on board information better in a calm environment.
If you do not want to speak to the person directly, you can phone or make an appointment with the person's supervisor - the team leader in the community or the nurse unit manager (NUM) in the hospital. If you are not happy with their response you may make an appointment to meet with the consumer or carer consultant or the Executive Director of the mental health service. Alternatively you can contact the Patient Liaison Coordinator or similar position. The Patient Liaison Coordinator is independent of the mental health service and will ensure that complaints and suggestions are investigated.
If your concern is still not resolved the patient liaison service can help you refer the matter further. Also remember that if you are happy about some aspect of your interactions with staff, let them or their supervisor know. Staff are not used to praise and if they know their efforts are appreciated, are more likely to repeat them with other patients/clients. You will be making a difference for people who come into the service after you.
Acknowledgement
Professor Robert Bland.