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SUBMISSION ON THE 2004
REVIEW OF THE HEALTH
& DISABILITY COMMISSIONER ACT 1994 & CODE OF RIGHTS
The Auckland Women’s Health Council (AWHC) is an
umbrella organisation for individual women and women’s groups in the The AWHC made extensive submissions during the
development of the Code of Consumers’ Rights in the mid 1990s and also made a
submission to the first Review of Code in 1999. The Council notes that some of
the issues we raised and the recommendations we made in our 1999 submission are
– five years later – still relevant and we have therefore chosen to reiterate
them. Question 1 Are the definitions in the Act adequate and
appropriate? The AWHC agrees with the changes
to the definitions being made in the HDC Amendment Act which will bring the HDC
Act into line with the terminology used in the Health Practitioners Competence
Assurance Act.
Question 2 Is the purpose of the Act appropriate? The AWHC remains strongly supportive of the purpose
of the HDC Act being “to promote and protect the rights of health consumers and
disability services consumers.” While the Council agrees with the general
principle behind the mottos referred to in the consultation document of
“resolution not retribution” and “learning not lynching” (page 14) the Council
believes the vast majority of consumers are not after retribution or lynching.
They do, however, want to see changes so that what happened to them does not
happen to anyone else. It’s the medical professions that use these terms and
the Council is not happy with the focus being on not upsetting health
professionals. The information in the Commissioner’s last annual
report in addition to the Commissioner’s own statements have revealed that
there is now a need to refocus attention on promoting and protecting the rights
of consumers. The AWHC has become increasingly concerned at the loss of insight
into how the health system continues to operate in ways that disempower
consumers/ patients and the imbalance of power and control that still exists
between consumers and health professionals. The importance of the office of the HDC needing to
focus on the needs of consumers is a theme that is reiterated in several
sections of the Council’s submission.
Question 3 Should the Act be amended to include an obligation
that all persons exercising functions and powers under it have regard to the
principles of the Treaty of Waitangi? In its previous submission to the first review the
AWHC stated: The AWHC wishes to emphasise its strong support for
inclusion of references to the need to have regard to the principles of the
Treaty of Waitangi and to the status of Maori as tangata whenua. This was
something that the Council argued strongly for in its previous submission in
September 1995 and we are pleased to see this issue raised again. Our position on this issue remains unchanged. While
the Council acknowledges the steps taken by the HDC to apply the principles of
the Treaty of Waitangi we would support an amendment to the HDC Act to include
specific references to the Treaty. The need for such an amendment is reflected
in events occurring in the current political environment. Question 4 Are the functions of the Commissioner appropriate? The AWHC supports the Commissioner having the ability
to appoint more than one Deputy Commissioner and we are therefore very
supportive of the changes being introduced in the HDC Amendment Act which will
allow the Commissioner to delegate some of his functions to a Deputy
Commissioner. The AWHC also supports the move to a one-stop shop
for receiving complaints. The Council agrees with Women’s Health Action’s
suggestion that the HDC needs to develop a more active role as an advocate for
classes of consumers and the public as a whole. The Commissioner needs to take
a much more proactive role in promoting the needs and rights of consumers and
the protection that the Code of Consumers’ Rights offers consumers. The AWHC
would like to see the Commissioner taking a higher profile role in advocating
for the rights of consumers on an ongoing basis on important issues such as
women in the National Cervical Screening Programme losing their rights to be
consulted over access to their GP and hospital records; the implications of the
National Immunisation Register and the Meningococcal Vaccine campaign; the NHI;
consumer rights to information and to make informed choices on behalf of their
children; advocating for a national interpreting and translation service;
direct-to-consumer advertising; the use of Guthrie Cards; ethics committees,
etc. In the wake of a totally unacceptable change to the
Code of Consumers’ Rights that was supported by the Commissioner without prior
consultation with consum-ers and consumer groups, it has become obvious to a
number of organisations that the time has come for the HDC to refocus on the
rights of consumers, rather than the needs of health practitioners and medical
researchers. The results of the complainant survey as reported on
page 28 of the HDC’s Annual Report for the year ending 30 June 2003 revealed
that 41% of complain-ants were very dissatisfied with the way their view was
heard, 33% were very dissatisfied that they understood the reason for the final
decision made about their complaint, 48% were very dissatisfied with fairness
of the process, and 51% would not want to deal with the HDC in future! In
contrast the independent provider survey showed far higher levels of
satisfaction with the service. This is a timely reminder that the HDC’s role is
to protect the rights of consumers. The AWHC supports the amending of the Act that will
allow the Commissioner to consider complaints that deal with events that
occurred prior to 1 July 1996. Question 5 Should the Director of Proceedings be able to negotiate funding directly
with the Ministry of Health? The AWHC recommends that both the Director of
Proceedings and the Director of Advocacy be able to negotiate funding directly
with the Ministry of Health and/or Treasury. In its submission on the 1999
review the AWHC argued that the Commissioner should be able to go directly to
Treasury for funding rather than being dependent on the Ministry of Health. The
Council believes that there is a need for both the Directors of Proceedings and
Advocacy to be financially independent of the Commissioner and for the
Commissioner to be independent of the Ministry of Health. We agree with the
Director of Proceedings that there is a potential for the independence of the
Director’s role to be compromised in having to negotiate with the Commissioner
for the allocation of funding. Question 6 Should the Director of Proceedings be able to
delegate powers, duties and functions under the Act? The AWHC supports the suggestion that the Act be
amended to permit the Director of Proceedings to delegate powers, duties and
functions under the Act in order to improve administrative efficiency and
reduce delays, and to provide an alternative in situations where there is a
conflict of interest. Question 7 Is it necessary to retain a provision to review the
Act every five years? The AWHC recommends retaining the provision of
reviewing the Act every five years. Experience shows that the health system is
constantly changing and that this is unfortunately likely to continue. Any
change to the interval could result in the HDC making changes or agreeing to
amendments to the Act – or the Code – without consulting with consumers and
consumer groups. This is unacceptable. Question 8 Should the Act and/or Code be amended to include
reference to the responsibilities of consumers? The AWHC is strongly opposed to the Act or the Code
being amended to include reference to the responsibilities of consumers. The
Council also opposes the implied suggestion on page 23 of the consultation
document that organisational providers (such as hospitals) or Colleges publish
internal codes of consumer responsibilities. There are serious implications to
the HDC being seen to be encouraging the production of other codes for
consumers including:
The emphasis must remain on a consumer rights-based
Code. Question 9 Should the Act and/or Code be amended to include a
right to access publicly funded services? In its submission on the 1999 review the AWHC wrote: The Council is still of the opinion that access to health services and unacceptable delays in accessing health services must also be addressed under Right 4 within the Code as they do represent aspects of appropriate standards of health care. This was our position in our 1995 submission and events since then have simply served to strengthen our conviction on this issue. The AWHC remains convinced that timely access to
publicly funded health services must be included in the Code. Recent events
have reinforced the necessity for such a principle, namely the government’s
decision to extend the breast screening programme to women under 50 when such a
decision is not evidence-based and women currently diagnosed with breast cancer
are having to travel to Question 10 Is it necessary to review the Code every 3 years? The AWHC recommends retaining
the provision of a 3-yearly review of the Code.
The Council strongly recommends
that a new provision be introduced that prevents the Commissioner from being
able to suggest, support or introduce changes to the Code of Consumers’ Rights
without widespread consultation with consumers. The necessity for such a
provision is the change to Right 7(10) that has been supported by the current
Commissioner without consultation with the public/ consumers.
Question 11 Should the Director of Advocacy be able to negotiate
funding directly with the Ministry of Health? As noted above the AWHC strongly
supports both the Director of Advocacy and the Director of Proceedings being
able to negotiate their funding directly with the Ministry of Health/Treasury.
The need for this was highlighted when the previous Commissioner reduced the
budget for advocacy and dramatically decreased the number of advocates. This
must not be permitted to happen again.
Question 12 Is the current structure for advocacy services
appropriate? In its submission on the 1999 review the AWHC wrote: The AWHC agrees with the need to centralise advocacy
services in order to provide consistency and standardisation of advocacy
services across “A regional structure is likely to duplicate
overheads such as management and administration as well as functions such as promotion,
resource development, reporting, and even the development of policies and
procedures.” (Page 8). Five years on the AWHC strongly recommends there be a
nationally based service employed by the Director of Advocacy under a direct
budget/contract with the Minister. Only that way will there be the ability to
achieve consistency, transparency & accountability that has been so lacking
under the current model of services. It is unacceptable that there has been
such huge variability in services for consumers to date. The AWHC does not
think there is a need for managers - their salary can employ several more
advocates on the ground which is what is needed. Question 13 Are the functions of the advocates appropriate? The AWHC agrees with the comments made by Women’s Health Action that while high levels of satisfaction from both consumers and providers are desirable the Act makes it very clear that the advocacy services should operate for the benefit of consumers. The Council disagrees with the Commissioner’s comments on page 28 regarding the need for greater understanding by the advocate (and by implication by the consumer) of the “clinical context in which a provider operates” and of health system processes. It’s the health system that needs to change. Health systems and services are there to provide services that meet the needs of consumers not health practitioners. The AWHC was most concerned at the results of the satisfaction survey reported on pages 9 and 10 of the HDC’s Annual Report for the year ended 30 June 2003. The results reveal a basic flaw in the empowerment model of advocacy currently in vogue within the advocacy services which argues that by assisting/empower-ing consumers to be their own advocates in one situation they will not need to engage the assistance of an advocate in future dealings with the health system. The consumer survey revealed “consumers felt they could only move on to some extent” and were not “confident in being able to sort out a similar issue on their own without the assistance of an advocate.” This is not good news for the advocacy service’s model. If consumers are not meeting the needs of the advocacy service by being empowered to be able to do without their assistance when faced with a similar set of circumstances then the Council suggests that the advocacy service needs to develop a model that is more in keeping with where consumers are at and meets the needs of consumers. Question 14 Are further changes to Part IV (Complaints and
Investigations) necessary? It is difficult to respond to this question when
there are impending changes about to be implemented under the Health
Practitioners Competence Assurance Act and under the HDC Amendments Act. The
AWHC believes it will be in a better position to provide an informed opinion
when the next review is undertaken. The AWHC is very pleased with the change that now
permits consumers to take complaints directly to the Human Rights Review
Tribunal. Question 15 Should the Act be amended or, taken as a whole, are
the existing provis-ions and the changes that will come into effect under the
HDC Amendment Act 2003 satisfactory? In its submission on the 1999 review the AWHC wrote: The AWHC wishes to raise again the
issue of where ethics committees should be placed. Council members believe that
it is inappropriate for the Health Funding Authority to have control over
ethics committees and to be responsible for resourcing them. The Council has
always maintained that ethics committees should be independent of the HFA.
Recent events have also strengthened our position on the need for independence.
The Council therefore recommends that ethics committees come under the wing of
the Office of the Health & Disability Commissioner but be independent in
the same way that it is proposed that advocates operate independently of the
Commissioner. The AWHC strongly recommends the establishment of a
national system of ethics committees which comes under the umbrella of the HDC.
Ethics committees should not be under the control of the Ministry of Health.
The Council recommends appointing a Director of Ethics who has jurisdiction
over all human ethics committees. Review of the Code of Consumers’ Rights Question 16 Should the Code be amended or are the existing rights
satisfactory? The AWHC is outraged that having
supported a significant amendment to Right 7(10) of the Code without
consultation with the public the current Commissioner is then able to comment
that “there is little need for amendment.” The AWHC notes that following the
first review in 1999 then Commissioner Robyn Stent was “not persuaded that
Right 7 (10) should be amended.”
As stated previously in this
submission the AWHC strongly recommends that a new provision be introduced that
prevents the HDC from being able to suggest, support or introduce changes to
the Code of Consumers’ Rights without wide-spread consultation with consumers.
It is essential to ensure that there is no repetition of such events and that
the current Commissioner goes down in history as the only HDC to be able to support
an amendment to the Code without consultation with the general public.
The AWHC also continues to oppose provider resource
constraints being an acceptable excuse for providers who are in breach of the
Code of Rights. Question 17 Should the right to an interpreter under the Code be
enhanced in any way, or is the current provision in Right 5(1) satisfactory? The AWHC continues to support the introduction of a national interpreting and translation services as they exist in some other countries. The Council believes that the Code of Consumers’ Rights, should apply to all consumers, not just those that are reasonably fluent in English. Informed choice and consent are key components of the Code of Rights and it is unacceptable to exclude those who do not understand or speak much English. The Council is also opposed to the use of family members or friends to assist with communication as this is very unsatisfactory and inappropriate for women. The AWHC recommends that the HDC take on board the
necessity to lobby government for interpreter services to ensure that there are
no barriers preventing particularly vulnerable migrant populations from being
able to exercise their rights under the Code. It is obvious that the need is
there as there are very few complaints being received about language
difficulties between providers and consumers. Question 18 Should the right to provide services to incompetent
consumers under Right 7(4) of the Code be modified in any way? The AWHC recommends that the provisions set out under
Right 7(4) remain exactly as they are. The AWHC reiterates its strong opposition to the
changes made to Right 7(10) and believes that a dangerous precedent has been
set by changing the Code of Consumers’ Rights without consultation with consumers.
The use of the example of the prevalence of HIV infection among pregnant women
reveals that the office of the HDC is seriously uniformed about this issue.
There is no uncertainty about the prevalence of HIV infection among pregnant
women. It is not a widespread problem and the increase in the rate of HIV
infection in women in general is occurring in migrant populations. It is
therefore unwarranted and absolutely unethical “to test, anonymously, blood
from newborn babies collected on Guthrie cards.” If Guthrie cards are to be used for anything else
than the purpose for which they are currently being used then there must be
wide spread consultation, the development of educational material that explains
both the changes and the options that consumers have to demand the return or
destruction of the Guthrie card, and the establishment of a special ethics
committee that is charged with overseeing the Guthrie card database. Consumers
and consumer groups must be involved in all of these initiatives. The AWHC is extremely disappointed that the HDC has
placed the needs of researchers above the rights of consumers to be asked to
give their consent to the use of body parts or bodily substances. This
disturbing and dangerous precedent has the potential to undermine public
confidence in the office of the HDC and it’s commitment to protecting the
rights of consumers. Lynda Williams Director
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