Carers Experience of Primary Carer Recognition in 2012 versus 2009

Mental Health Carers ARAFMI NSW Inc (ARAFMI) conducted a survey of its carer’s experience of the implementation of primary carer recognition in 2009 and their awareness of other related changes made to the NSW Mental Health Act in 20078. A follow up survey was conducted again in 2011-12 in order to review the progress of the implementation process over the five year period. Below are comparison of carer survey results obtained and 2009 and 2012. The survey has indeed pointed significant improvement in some respects; however it has also indicated some areas which still require some level of improvement. Below are the questions and results as  from the two surveys.

1. (2009) When was your last interaction with any NSW mental health services as a carer?

In 2009 68% had seen a NSW Mental health service in the last 2 years, while in 2012 88% had done so. This should increase the reliability of the 2012 survey results, by ensuring they are more representative of current stakeholder experience.

2. What information would you like to receive on first contact?

In the first survey respondents indicated a need for treatment and consumer and carer support services information, in the second survey response was very much the same.

3. Did you receive any or all of the information would you have liked to receive on your first contact with mental health services at the time?

A total of 20.8% answered YES in 2009 while 55.6% answered YES in 2012, an improvement of 34.77% in response. Moreover, the NO responses dropped by difference 20.18% in 2012, indicating significant improvements in the provision of information by health services over the five year period (if this sample is considered to be representative). 

4. Are you aware of the recent changes to the NSW Mental Health Act and the recognition of the role of ‘Primary Carer’?

In 2009 43.75% answered YES they were aware of changes to the act and the recognition of the role of primary carer while 62.5% answered YES in 2012, a significant improvement. However in 2009 45.83% answered NO while 37.5% did so in 2012. This is a difference of only 8% which was very disappointing, given the improvement in the ‘YES’ answers. However, it is important to note that people are becoming more aware of the act. (See question 6). 

5. How did you find out about primary carer changes?

In 2009 there were lots of NGOs proving primary carer information and many carers reported they had heard about the recognition of primary carers  through ARAFMI.  In 2012 a wider variety of services were advanced as providing this information. In 2009 NGOs were playing a more prominent role, and there seems to have been a decline in people getting information from NGO service providers, with health services playing a more significant role. The previous sample may have had a high proportion of ARAFMI members in it which could also have skewed the previous results in NGOs favour, but this also probably reflects the progress of implementation across NSW Health.

6. Have you been nominated or otherwise deemed to be the Primary Carer of the person you care for?

In 2009 the YES response was 60.42% compared to 75% in 2012. However if you compare responses to question 6 and 4 (are you aware of the primary carer changes) in 2009, only 43% said they were aware of primary carer changes; but 60% said they had been nominated as carer.  Similarly, in 2012 said they 75% were nominated but only 62% had said they were aware of primary carer rights. It is hard to see how you could be unaware of primary carer rights if you have been nominated as one. Therefore, it is likely that this means people were probably answering question 4 in terms of their knowledge of the changes to the Mental Health Act rather than about their rights as primary carers per say.

7. Has any other person been designated as the Primary Carer of the person you care for?

In 2009 only 10% had another person nominated as primary carer, while in 2012 it was 22.2%. If we add answer to question 6 and 7 together in 2009 around 71% of respondent’s family members had nominated someone as a primary carer. In 2012 this goes up to 96% of respondents.

This would be a very high level of nominations of primary carers and either we have an unrealistically unrepresentative sample of people who have taken the survey (which is possible given the emphasis on providing the survey to informed carers), or the  health services may allowing more than one person to be nominated at a time. As caring roles are frequently shared between family members, this would be a welcome development and should probably be more explicitly facilitated by the Mental Health Act.

8. Has the way in which NSW Health’s mental health services share information about your loved one with you improved since the changes to the Mental Health Act in NSW were made (over a year ago)?

• ‘Major improvement’ has increased from 4.17% in 2009 to 22.2% in 2012 difference of 18.03% .
• Improved’ went from 22.9% in 2009 to 22.2% in 2012, almost no change and making a total of 27% people experiencing improvement in 2009 to 44.4% in 2012.
• ‘No change’ was experienced by 37.5% in 2009  and by 44.4% in 2012 which is broadly similar.
• People answering ‘worse’ saw a slight increase from 4.17% in 2009 to 11.1% in 2012.
• No one in either survey thought things had become ‘much worse’ since the changes.
• While there was 31.25% ‘blank’ responses to this question in 2009 there was 0% blank in 2012.

These wide ranging results would indicate that performance of health services with regard to information sharing varies significantly resulting in different carers and consumer experience, and that while some are getting better and some are getting worse; overall there is a slow improvement in performance.

9. Has the person you care for received involuntary treatment in the last year? (In-patient or CTO - Community Treatment Order)

There has been little change in responses to this question.

• In 2009 29.17% answered YES, 62.5 answered NO; while,
• in 2012 33.3% answered YES and 66.7% answered NO.

Marginal increases  in both YES and NO responses show these samples of people to be broadly comparable.

10. If so, was a Treatment Plan developed for them?

A total of 22.92% answered YES in 2009 and 25% YES in 2012, a very similar number. 14.5% answered NO in 2009, while 75% said no in 2012, which appears to be a massive decline in performance.

However, these results should be interpreted carefully due to the massive ‘blank’ response of 60% in 2009 (which if added to the 14.5% ‘NO’ starts to look like a very similar response), even though there was a ‘don’t know’ option available. The Blank responses corresponded closely to the percentage of people whose loved ones had not recently had involuntary treatment in that survey. In the 2012 survey due to an error options were limited to YES/NO, and so people whose loved one had not received involuntary treatment probably answered ‘NO’. This may also show how uncommon treatment plans are for people undergoing voluntary treatment, but this is a more speculative interpretation.

11. Has the Plan received adequate follow up?

In 2009 14.58% answered YES for treatment plan follow up and 20.83% answered NO; while in 2012 0% answered YES 100% answered NO, a massive increase in inadequate support in the community. ARAFMI notes an implausibly large deterioration in the criteria; however this NO result possibly includes people who have not had their love ones subject to involuntary treatment as well as those who have. There is also 100% dissatisfaction with community and non-community who are in this sample. This could also potentially reflect on follow up for voluntary and community based mental health services, if people under such services are also supposed to receive plans and follow up.

12. If a Treatment Plan was developed for the person you care for; was the Primary Carer involved in the development of this Plan, particularly any discharge planning?

Results in 2009 show 10.42% of respondents answered YES and 29.17 NO;

and in 2012 40% answered YES and 60% NO  once again showing an increase in both positive and negative responses.  This is consistent with greater involvement of carers and a reduced number of ‘skipped’ responses which may mean that those whose loved one has not received involuntary treatment at all in the relevant period abstained from answering in 2009 and answered NO in 2012. However, once again this indicates some patchy results across health services across NSW

13. If the PC was not involved in especially discharge planning, why not?

In this response a large number of respondents in 2009 provided various reasons to why primary carers were not involved in discharge plan while in 2012 there was less response to this question. This could suggest both smaller number of families being excluded from planning and that a smaller number of people responding to this survey had loved ones subjected to involuntary treatments.

14 (2012) What information do you feel should be provided to the carer before discharge of their loved one?

Finally most respondents in 2009 wanted information about treatment, medication side effects and supporting their loved one after discharge and these results are once again very similar to those in 2012.

Conclusion

Generally speaking we still see evidence of a patchy implementation of the recognition of primary carer rights across health services in NSW in 2012, however, there is also evidence of a general improvement in the recognition of carer rights since 2009, which is very pleasing to note, even if there is still work to be done.