ARAFMI NSW CARER SURVEY NO. 1 ‘The Carer’s Experience’– 2009 Results

The purpose of this survey was to better understand the impact that the recognition of the role of Primary Carer in the recently passed NSW Mental Health Act 2007 has had on the treatment of carers by Mental Health Services in NSW. It also asked about the information carers would have liked to receive both before their loved one’s admission and before discharge back into the community.

 This survey is being run again by ARAFMI now (to see how things have changed since 2009) and if you would like to take it to advise of you experience of the implementation of the new primary carer rights, please click on this link: https://www.surveymonkey.com/s/FFP63WD

 However, here is a summary of the results to the previous survey in 2009. (If you want to take the survey, then why not do so before you read these results, to minimize the chance that they influence your answers).

 Primary Carer Background Issues

The new provisions of the Mental Health Act 2007 allows specially nominated ‘primary’ carers special rights to be informed of the treatment of the person they usually care for e.g. what medication they ought to be taking, as well as being consulted in the planning of treatment, especially discharge planning. These rights are mainly outlined in sections 71 to 79 of the Act.

 The survey contained 14 questions, including four questions which invited respondents to provide their own lists or suggestions in response (Questions 2, 5, 13 and 14.) The other questions invited yes or no answers, except for question 8 which asked to grade improvements in information sharing.

 Demographic Results

The demographic results tended to show that the membership of ARAFMI (that responds to surveys at least) are typically older carers. To be precise; of the members returning surveys; the biggest group were in their 60s (around 36%) the second biggest was in their 50’s (32%) around 9% each on their 40’s and 70’s and 5.5% in their 80’s and only about 2% in their 20s.

 We also learned that our survey responding members are most often the mothers of the person being cared for at a whopping 78%.  Around 14% each were the fathers; 12% were the partners of those cared for and only 2% identified as a friend of the consumer.

  The Carer Experience Survey – Results Question by Question

 Question 1asked for the last time the carers had interacted with NSW Health as carers. This was important to know because it would tell us whether they had experienced Health services after the introduction of the Primary Carers provisions in the NSW Mental Health Act in 2007.

 Of the respondents nearly 71% had interacted with NSW Health as a carer since 2007 when the Primary Carer amendments were introduced into the Mental Health Act and over 58% had done so in the last 12 months.

 Question 2asked for the different kinds of information that carers would like to receive on first contact with mental health services. The responses are listed in the attached table 1, but most of the same kinds of information previously asked for was again requested, including generic information about the loved one’s illness, medication information, treatment information and support available to the carer.

 Question 3asked if people had received the kinds of information they had wanted when they first had contact with MH services. Of the respondents, nearly 65% said they did not receive the information they needed while approximately 22% said they did; about 4.5% received some of it while and 9% did not respond.

 Question 4asked if people were aware of the Primary Carer changes introduced to the NSW Mental Health Act in 2007. Respondents were evenly split with about 44% saying they were aware compared to almost 44% saying they were not, with 11% not responding. This result might not be unexpected given that nearly 1/3 of the respondents had not had dealings with mental health services since 2007. However, this was still quite a large percentage that were unaware of the changes given that 70% of respondents did have some contact in that time.

 Question 5asked how people had found out about the Primary Carer changes. This information seems to have predominantly come from Non-Government sources like ARAFMI and Schizophrenia Fellowship and various support groups or some carer specific support run by Area Health Services.

 Question 6asked if respondents had been ‘nominated or otherwise deemed’ a Primary Carer and Question 7 asked whether anyone else so was nominated?  Approximately 64.5% of respondents had been nominated or deemed a Primary Carer and about 27% had not, while about 2% were unsure. Interestingly around 9% of respondents to Question 7 advisedanother had person also nominated as a Primary Carer, (82% had not), which is what we would expect to see given the way caring roles are often shared, especially between parents, even though this is not specifically mentioned as being possible by the legislation itself.

 Interestingly about 24.5% of people answering ‘no’ to 4 (are you aware of Primary Carer changes) answered yes to 6; so they were unaware of the changes but none-the-less had been deemed or nominated PC’s. This could reflect that a large percentage of people in the caring role had not been adequately informed about the new legislation or were unaware of the specific laws that give them rights as carers, even though they continued to act in this capacity.

 Question 8asked if the changes to the Mental Health Act 2007 had resulted in any improvements in changes in the way in which information is shared with carers by health Services. Respondents were asked to grade this over a continuum from Much Improved through Improved, No Change, Worse or Much Worse.

 Encouragingly about 27% of respondents had noted some or much improvement. However, by far the largest groups of respondents had noted no change at about 38%.  Only 4.5% had noted a deterioration in the way information is shared but a massive 31% did not respond to this part of the survey. This does correspond roughly to the number of people who had not recently had dealings with health services and may explain the large numbers not wishing to venture an opinion on this subject (although it could also be because they were uncertain what information they were supposed to receive).

 Question 9and the four following it to Question 13 concerned the specific experience of the application of Primary Carer provisions since their introduction in 2007. Therefore separate figures will be provided to these questions identifying those answering yes to 9 (has your loved one received involuntary treatment in the last 12 months?). This question was asked as a crude way of working out which respondents were caring for people who were so unwell as to be likely to require a treatment or discharge plan. (N.B. the Mental Health Act including the Primary Carer legislation applies to mental health treatment in NSW; both voluntary and involuntary and inpatient and outpatient, although some of the rights of primary carers are not activated until involuntary treatment is commenced. ARAFMI does not support the idea that a person should be prevented from nominating a primary carer until they are acutely unwell and require involuntary treatment).

 Only about 29% of respondents said that their loved one had had involuntary treatment within the last year. Over 62% clearly stated no and only about 9% did not respond to this question.  This could tell us something about how long people usually remain members of support organisations like ARAFMI after the first initial shock of their loved one’s diagnosis and early treatment.

 Of those who indicated that their loved one had had involuntary treatment in the last year, about 20% said they were unaware of the Primary Carer changes at question 4.

 Of those who said they were the Primary Carer for their loved one AND their loved one had involuntary treatment within the last 12 months, around 13% indicated they were unaware of the PC changes. 

 This would indicate a significant level of carers unaware of their new rights. 

 Question 10then directly asked if the consumer had a treatment plan. While only about 23% of all respondents answered yes, nearly 70% of those who had answered yes to involuntary treatment in the last 12 months advised their loved one had been given a plan. This shows a marked improvement.

 Only about 16% of all respondents stated that their loved one definitely didn’t have a plan (and the vast majority, 60% did not know or did not respond).

 However, only about 8% of carers whose loved ones received involuntary treatment in the last 12 months advised they did not have a plan or they didn’t know and only around 16% didn’t respond. 

 This would seem to reflect 2 things; that a lot of carers were excluded from any knowledge of the treatment plans of their loved ones previously and that at least carer’s knowledge of whether their loved one has a plan at all seems to have significantly improved in the last 12 months, but still has room for improvement.

 Question 11asked if the Plan received follow up. The majority (62%) once again did not respond, possibly reflecting the way in which carers traditionally have not known what was in the Plan let alone if it happened. Only about 22% stated clearly no with just over 13% of all respondents answering yes, and around 2% answering ‘partially’.

 Of those of carers whose loved ones received involuntary treatment in the last 12 months, the picture was far more mixed with about 46% saying the Plan had been adequately followed up; 38.5% saying it had not; 8% saying only partially followed up and 8% not responding. 

 This shows that even if there have been improvements in the provision of Plans, this has not been entirely matched with practical assistance and follow up to make them work.

 Question 12asked if the carer had been involved in discharge planning. About 31% of all respondents said no; 60% did not respond and only around 9% said yes, a very poor score.

 Of those of carers whose loved ones received involuntary treatment in the last 12 months however, only a little over 15%said that they had been consulted in the discharge planning and nearly 62% said they had not been and a still very large 23% did not advise. This is an even poorer result from a group of respondents which should be better informed than those whose loved one had not received such treatment.

 This indicates that health services have a very long way to go in implementing the right of Primary Carers to be consulted in discharge planning.

 Question 13asked why people were not included and these were perhaps the most disappointing results received. The frustration of some of the respondents with the situation was evident from their answers, which included things like, No case manager appointed’ or ‘Private Hospital involves no one except patient’ or ‘family are a joke – a thorn in their sides’ or ‘any time I rang I was told it was the patient’s choice’.  None of the answers gives any confidence that the Act is widely understood within health services or is being implemented in the manner intended by the NSW Parliament.

 Finally Question 14 asked what information people would like to receive when their loved one left hospital. Once again the same kind of things that have always been requested were prominent, such as support to help the consumer stick to their treatment regime etc, advice about their medications and services which might be of assistance. However a lot of the requests were still for specific information about the care needs for their loved one; such as a diagnosis, medication required, contact numbers for case workers or the team managing the case, scheduled appointments etc; all the kinds of information the Primary Carer provisions were supposed to allow the carer to access without specific additional consent on every occasion from their acutely ill loved one (so long as this is disclosed to an appropriately nominated person).

 Conclusion

All in all the Survey showed that there was still a very wide experience among carers in NSW of the recognition of their rights and the facilitation of their participation in care planning by mental health services across NSW. While there seems to have been a significant improvement in the provision of generic information around mental illnesses to carers and a heartening improvement in the provision of care plans, particularly on discharge; serious issues are still indicated in some other areas.

 Specifically, there was a disappointing level of awareness among carers of their new rights under the Mental Health Act and low levels of participation by carers in discharge planning as required by the legislation.  The type of information that carers indicated they wanted to have on the discharge of their loved ones (appointment times, medication information, contact people) also indicated clearly that they are not always being advised by the treating clinicians of their loved one’s needs, even when their loved one was being discharged back into their care. 

 Recommendations:

1. NSW Health should review Discharge Planning Guidelines (this is currently ongoing under the Clinical Advisory Council)
2. NSW Health should encourage the nomination of primary carers by consumers when they are well and stable and should not only ask for nominations when people are so unwell as to require involuntary treatment (when they may lack the capacity to make sound decisions) 
3. NSW Health should develop a statewide on-line Register of Primary Carers, to be maintained by the authorised medical officers or directors of community mental health services and available to Health staff to help them identify the nominated Primary Carers for consumers in NSW.