Carer Questions: The importance of partnership with family and carers

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By Warren Heggarty

It is important for people providing services to understand how family members and carers are affected by a person’s mental health issues. People caring for a person with a mental health issues are moving through uncharted waters, especially in the early stages and especially where a person has become an involuntary patient. Sue’s carers and family might be asking questions like:

  • What is going to happen to Sue?
  • I’m confused, I don’t know what to do!
  • How will I cope with this?
  • What caused this mental health issue?
  • Why has this happened to Sue?
  • What will other people think about Sue?
  • What will happen to our family?
  • Nobody ever tells me anything!
  • I’m always the last to know!
  • How can they lock Sue up like this? She’s done nothing wrong!
  • Sue must have SOME legal rights? Isn’t she entitled to a lawyer?

Mind Australia and Helping Minds produced a book called ‘A Practical Guide for Working With Carers of People With a Mental Illness’ in 2016. (Mind Australia, 2016) It suggests that we try to put ourselves in the other person’s shoes. For example, the mental health worker needs to appreciate the effect that Sue’s mental health issues are having upon her carers. It may well turn out that working in partnership with her carers will have great benefit towards Sue’s recovery. 

Yet sometimes the further things progress, the more the questions mount up. 

  • Where will Sue live when she is discharged from hospital?
  • Who will support her if I can’t?
  • Will I have to give up work?
  • I don’t know anything about medications and side effects!
  • What if something goes wrong?
  • What if Sue never gets better?
  • Who can I turn to?
  • Is there any support available for me as the carer?
  • Who are these people? Are they psychiatrists, nurses, security guards?
  • This medicine seems to be making Sue WORSE not better! 
  • No one seems to know anything. It’s like a secret service. 
  • Can they legally force Sue to take this medication?

The Guide describes the traditional way which staff have been trained to deal with carers and consumers as an ‘individual treatment model.’ The consumer is at the centre and may well be communicating with the service provider on the one hand and their carer on the other. But the carer and provider never directly communicate. (p. 8) 

Confidentiality is often cited as the reason this direct communication doesn’t happen. However, engaging in partnership between consumer, carer and provider does not have to breach anyone’s confidentiality if it is handled correctly. The model used in the United Kingdom is the ‘triangle of care’ in which –ideally- the three parties collaborate with one another (p. 9). Such an approach can clear up a lot of the doubt and uncertainty expressed in the Carer Questions listed above. 

The Guide goes into further details about the benefits of working in partnership, but a chief benefit is that often, each individual only knows PART of the picture. To get the full picture and to facilitate the recovery journey, it is best to get the WHOLE picture. (p. 10)

The Guide suggests four Partnership Standards:

1. Carers and the essential role they play are identified at first contact, or as soon as possible thereafter (p. 13).

NOTE: Importantly, carers don’t often see themselves as carers, and consumers don’t often describe their carers as such either. The Guide therefore recommends staff use questions like ‘Who do you rely on?’ Or ‘Who worries about you the most?’ or ‘Who helps you the most’ and so forth. 

2. Staff are carer aware and trained in carer engagement strategies. (p. 17)

3. There are protocols about confidentiality and the sharing of information. (p. 19)

4. People with experience as carers are engaged in all services. (p. 23) 

Further information

Working with Families and Carers online library:

http://www.workingwithfamiliesandcarers.com.au/

References

Mind Australia. (2016). A practical guide for working with carers of people with a mental illness. Mind Australia, Helping Minds, Private Mental Health Consumer Carer Network,Mental Health Carers ARAFMI and Mental Health Australia. Retrieved from http://www.mentalhealthcarersaustralia.org.au/wp-content/uploads/2016/08/A-Practical-Guide-for-working-with-people-with-a-mental-illness-February-2016.pdf

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