Health Consumers' Council's Manager of Advocacy and Research and Murdoch's Dr Norman Stomski co-presented on a recent project where 60 de-identified advocacy cases were analysed for themes and to explore how advocacy supported the mental health consumer patient journey.

1. Advocacy and Research
Mental health consumers’ experience of
individual advocacy -
Dr Martin Whitely,
Manager of Advocacy and Research, HCC
Dr Norman Stomski
School of Health Professions
Murdoch University

2. Why do we link Advocacy and Research?
Individual stories reveal systemic problems
and patterns.
Individual advocacy grounds us in reality.
Most health research is driven by
commercial and not consumer interest.

3. INDIVIDUAL ADVOCACY – A CORE FUNCTION
HCC advocates assist people with a health/mental health related issue
We offer options and support but the consumer decides
Over 1400 new advocacy inquiries past 27 months – over 600 a year and
growing
We assist getting care that is needed and/or in making a complaint
• Service Provider
• Health & Disability Services Complaints Office (HADSCO)
• Australian Health Practitioner Regulation Agency (AHPRA)
• Other (Ombudsmen, Consumer Protection, Professional Bodies etc.)
Host Monthly Legal Clinic
http://www.hconc.org.au/services/advocacy/

4. Why do people complain?
Physical Health (55% of cases in 2016) – very diverse few common
stories
Serious adverse event
Seeking different care
Access to patient records via FOI
Don’t want the same thing to happen to someone else
Pain medication access issues
Mental Health (45% in 2016 and growing rapidly) – our advocates hear
the same stories all the time
Disagree with their diagnosis and/or treatment
Fear becoming involuntary patient (can’t get out of the system)
Can’t get access to services (can’t get into the system)
Impacts of historical grievances

5. Why has the number of mental health
consumers seeking advocacy from the HCC
grown so quickly?
Possible explanations:
The new WA Mental Health Act (2014) expanded the role of the
Mental Health Advocate (formerly the Council of Official Visitors) so
that they see more consumers and refer more notionally ‘voluntary
patients’ on to the HCC.
We have an increased rhetoric about ‘recovery’ and ‘patient rights’
but the system hasn’t caught up!
Increased harms from drugs both illicit and prescription.

6. Questions?
www.hconc.org.au
(08) 9221 3422
info@hconc.org.au

7. Mental health consumers’
motives for seeking
advocacy support: a
qualitative exploration
Dr Norman Stomski
School of Health Professions
Murdoch University

8. Background
• Australian mental healthcare prioritises coercive treatment
over recovery orientated care
• Use of CTO’s in Australia is high in comparison to other
developed countries
• CTO’s provide no significant benefit in terms of service
use, social functioning, and quality of life.
• Australian rates of involuntary mental health admissions
are also high
8

9. Background (cont)
• Medical practitioners address all necessary criteria on
only 40% of admission forms
• Lack of appropriate documentation highlights the need
for oversight
• Risk of self-harm or violence to others often used to
justify CTO’s and detainment
• Mental health consumers no more likely to commit
violent acts than other members of the community
• Self harm very difficult to predict
9

10. What is known about mental
health advocacy
• Studies are relatively sparse with most
conducted in the UK
• Consumers often unaware about right to access
advocacy
• Health professionals commonly do not inform
consumers about availability of advocacy
10

11. What is known about mental
health advocacy (cont)
• Access to advocacy results in higher levels of
wellbeing, self-efficacy, and empowerment
• An Australian study found that provision of
advocacy throughout inpatient admission
resulted in improved treatment satisfaction
during treatment, fewer subsequent cases of
detention, and increased attendance at follow-up
appointments
11

12. The study aim
• Understand the issues that motivate mental
health consumers to seek the support of
advocacy services
12

13. Methods
• Murdoch University Human Research Ethics
Committee provided approval.
• 60 de-identified case records were obtained
from the Health Consumer Council’s database
• Case records were coded using grounded
theory procedures and then grouped into
themes
13

14. Findings
• There were four major themes that emerged
from the analysis
14

15. Theme 1: Concerns about
prescribed medication
• Most common medication related issue was the
enactment, or fear of enactment, of a CTO
• Voluntary consumers sought clarification about
the need to comply with prescribed medication,
and often feared that CTO’s would be enacted
as a result of non-compliance
15

16. Involuntary consumers were concerned about
the medication’s lack of effectiveness and side
effects
• sought advice about complementary treatment
approaches
• sought advice about engaging legal support to
challenge CTO’s
16

17. Some cases were especially concerning
• CTO continued despite consumer experiencing
neuroleptic malignant syndrome
• Primary school aged consumer prescribed six
different medications, three of which were taken
concurrently. Parent’s not informed of increased
suicide risk, despite three attempts while taking
medication
17

18. • Young consumer was threatened with CTO if
they did not comply with threefold increase in
dosage. Consumer had one kidney, and
medication could potentially exacerbate kidney
problems
• Several cases involved elderly consumers in
which medication was seemingly used as a form
of chemical restraint
18

19. Theme 2: Concerns about
involuntary detainment
• Many of the cases involved consumers who
were unlawfully detained
• In only one case did staff acknowledge that the
consumer was unlawfully detained
• In all but one case consumers were released
after receiving advocacy support
19

20. Theme 3: Clarifying healthcare related
information
• Consumers were commonly unsatisfied with the
level of detail health professionals provided
• An issue of particular salience was gaining
access to medical records either to better
understand received treatment or amend
incorrect details
20

21. Theme 4: Health professionals’
insensitivity towards consumer needs
• Theme encompasses diverse consumer issues
that health professionals demonstrated a lack of
empathy
• Some issues were everyday concerns that
individuals take for granted
21

22. Issues more specifically related to the delivery
of mental health care included:
• Consumers at risk of suicide denied admission
to facilities
• Consumer preferences for treatment not
accommodated
• Elderly consumers denied access to exercise
areas and separated from family members
22

23. Discussion
• The sense of fear reported by many consumers
was notable
• Consumers often feel vulnerable and anxious as
a result of mental health issues
• Ideally, the healthcare system would provide
safety and reassurance
23

24. • Clinicians might argue that the sense of fear
results from symptoms or lack of insight
• However, advocate intervention usually resolved
the issue, which suggests that the issues
eliciting fear were often legitimate
24

25. • Unsurprising that consumers sought advocacy
assistance for medication related issues
• Antipsychotic medication often impacts severely
on consumers’ quality of life
• Number needed to treat for antipsychotic
medication ranges from 6-15, meaning that, at
best, 1 in 6 consumers taking antipsychotic
medication experience therapeutic benefit
25

26. • Clinicians should collaborate with consumers to
better manage medication regimes
• However, clinicians are often dismissive of
consumers’ concerns
• Culture shift is required to address consumer
concerns in the first instance
26

27. • Issues other than medication or detainment may
seem somewhat trivial
• However, leaving these issues unattended
reflects a lack of respectful care
• In such circumstances, consumers are unlikely
to engage constructively in their care and
decision-making
27

28. Conclusion
• The sense of fear and disempowerment
consumers reported accentuates the importance
of advocates
• Advocates intervene successfully in the majority
of cases
• Beneficial to document the most effective
advocacy approaches, particularly so that they
can be shared and further refined
28