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Advocacy and Research
Mental health consumers’ experience of
individual advocacy -
Dr Martin Whitely,
Manager of Advocacy ...
Why do we link Advocacy and Research?
Individual stories reveal systemic problems
and patterns.
Individual advocacy ground...
INDIVIDUAL ADVOCACY – A CORE FUNCTION
HCC advocates assist people with a health/mental health related issue
We offer optio...
Why do people complain?
Physical Health (55% of cases in 2016) – very diverse few common
stories
Serious adverse event
See...
Why has the number of mental health
consumers seeking advocacy from the HCC
grown so quickly?
Possible explanations:
The n...
Questions?
www.hconc.org.au
(08) 9221 3422
info@hconc.org.au
Mental health consumers’
motives for seeking
advocacy support: a
qualitative exploration
Dr Norman Stomski
School of Healt...
Background
• Australian mental healthcare prioritises coercive treatment
over recovery orientated care
• Use of CTO’s in A...
Background (cont)
• Medical practitioners address all necessary criteria on
only 40% of admission forms
• Lack of appropri...
What is known about mental
health advocacy
• Studies are relatively sparse with most
conducted in the UK
• Consumers often...
What is known about mental
health advocacy (cont)
• Access to advocacy results in higher levels of
wellbeing, self-efficac...
The study aim
• Understand the issues that motivate mental
health consumers to seek the support of
advocacy services
12
Methods
• Murdoch University Human Research Ethics
Committee provided approval.
• 60 de-identified case records were obtai...
Findings
• There were four major themes that emerged
from the analysis
14
Theme 1: Concerns about
prescribed medication
• Most common medication related issue was the
enactment, or fear of enactme...
Involuntary consumers were concerned about
the medication’s lack of effectiveness and side
effects
• sought advice about c...
Some cases were especially concerning
• CTO continued despite consumer experiencing
neuroleptic malignant syndrome
• Prima...
• Young consumer was threatened with CTO if
they did not comply with threefold increase in
dosage. Consumer had one kidney...
Theme 2: Concerns about
involuntary detainment
• Many of the cases involved consumers who
were unlawfully detained
• In on...
Theme 3: Clarifying healthcare related
information
• Consumers were commonly unsatisfied with the
level of detail health p...
Theme 4: Health professionals’
insensitivity towards consumer needs
• Theme encompasses diverse consumer issues
that healt...
Issues more specifically related to the delivery
of mental health care included:
• Consumers at risk of suicide denied adm...
Discussion
• The sense of fear reported by many consumers
was notable
• Consumers often feel vulnerable and anxious as
a r...
• Clinicians might argue that the sense of fear
results from symptoms or lack of insight
• However, advocate intervention ...
• Unsurprising that consumers sought advocacy
assistance for medication related issues
• Antipsychotic medication often im...
• Clinicians should collaborate with consumers to
better manage medication regimes
• However, clinicians are often dismiss...
• Issues other than medication or detainment may
seem somewhat trivial
• However, leaving these issues unattended
reflects...
Conclusion
• The sense of fear and disempowerment
consumers reported accentuates the importance
of advocates
• Advocates i...
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Mental Health Advocacy and Research

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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.

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Mental Health Advocacy and Research

  1. 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. 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. 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. 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. 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. 6. Questions? www.hconc.org.au (08) 9221 3422 info@hconc.org.au
  7. 7. Mental health consumers’ motives for seeking advocacy support: a qualitative exploration Dr Norman Stomski School of Health Professions Murdoch University
  8. 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. 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. 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. 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. 12. The study aim • Understand the issues that motivate mental health consumers to seek the support of advocacy services 12
  13. 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. 14. Findings • There were four major themes that emerged from the analysis 14
  15. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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

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