A voice for women's health

REVIEWOF THE HEALTH & DISABILITY COMMISSIONER ACT 1994 & CODE OF RIGHTS - 2009

REVIEW  OF THE HEALTH & DISABILITY COMMISSIONER ACT 1994 & CODE OF RIGHTS - 2009

The Auckland Women’s Health Council (AWHC) is an umbrella organisation for individual women and women’s groups in the Auckland region who have a commitment to women’s health issues. The focus of the Council is broad and spans many issues that are of interest to women, particularly those that impact on their health and the health of their families. The Council has a special interest in consumer rights, advocacy, ethics committees, medical ethics and other issues that arose out of the Cartwright Inquiry.

The AWHC made extensive oral and written 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 and to the second Review of the Act and Code in 2004. The Council notes that some of the issues we raised and the recommendations we made in our 1999 and 2004 submissions are – ten years later – still relevant and we have therefore chosen to reiterate them.

Question 1
Is it necessary to review the Act and Code every 3 – 5 years? Would 10-yearly reviews suffice?
The AWHC recommends retaining the provision of a 3-5 yearly review of the Code. The Council does not agree with the statement that the requirement is a hangover of initial fears on the part of provider groups. Consumer groups have ongoing concerns and it would be totally unacceptable to have to wait a decade before being provided with the opportunity to have our concerns addressed. Unlike health professionals who have been able to get changes to the Code of Rights introduced outside of the Review process, consumer groups do not have the same clout.

As we stated during the 2004 review process 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 and consumer/community groups. The necessity for such a provision is the change to Right 7(10) that was supported by the current Commissioner without consultation with the public/ consumers.

Question 2
What amendments to the Act or Code in relation to disability do you suggest and why?

The AWHC supports the appointment of a designated Disability Commissioner within the office of the HDC and supports the introduction of amendments to the Act that would allow for this to be implemented. The Council is also aware that the issues for the disability sector are far wider than health and that this may not be the option that people with disabilities would prefer. Nonetheless, the Council
believes that changes must be made to the HDC Act that would allow complaints relating to access to services, including how services are accessed and funded, should be able to be taken to and investigated by an independent Disability Commissioner.

The Council notes that the government’s recent decision not to proceed with the establishment of a special Disability Commission strengthens the necessity of the HDC addressing the need for some changes “in legislation that will enable the HDC to better serve consumers using disability services.”

Question 3
Should the Act and the Code be amended to include a right to access publicly funded services? If so, how would such a right be framed?

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.”

In 2004 the AWHC stated that the Council remained convinced that timely access to publicly funded health services must be included in the Code and that. recent events had reinforced the necessity for such a principle.

The Council’s position on this issue remains unchanged. We suggest the right to access publicly funded services be included as part of Right 4, and that the HDC produce a draft of this and the other changes to the Code, eg Right 7(10).

Question 4
Should the Act and/or the Code be amended to include health information privacy? If so, what amendments do you suggest and why?

The AWHC supports the Privacy Commissioner retaining the primary responsibility for issues to do with health information privacy. The Privacy Commission now has considerable experience and protocols for dealing with breaches by a health provider of their legal and ethical duties under the health Information Privacy Code.

The Council agrees with the Privacy Commissioner’s comments that the Code of Consumers’ Rights would benefit from amendment so that it “appropriately supplements privacy rights in the sector and fills gaps not well covered by the Privacy Act.”

Question 5
Is the current contracting model for providing advocacy services appropriate? If not, which of the two alternative options identified do you support and why?

The AWHC agrees that the current contracting model is not appropriate and that changes are needed.

The Council supports the third option of an independent office of the Director of Advocacy who would be able to employ the advocates directly. It is essential that the advocates are independent of the Commissioner(s) and that the public perceives that the advocacy service and the advocates themselves are independent, but part of the public health system.

Given the history with the first Commissioner’s slashing the advocacy budget, the Council strongly recommends that the Director of Advocacy should have his/her own budget and should not have to compete with other services provided by the Office of the Health and Disability Commissioner. This was something that the AWHC argued for in our previous submission in 2004:
“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 & account-ability 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 6
Do you suggest any amendment to the Act in relation to appeal rights or naming decisions?

The AWHC does not support providers having the right of appeal when found in breach of the Code of Rights or being named once the decision has been made that they have breached the Code. As the consultation document notes providers currently have the option of challenging the Commissioner’s opinions through the Office of the Ombudsman, or through a judicial review.

The Council believes that having the right of appeal could result in the complaints process being prolonged as health providers use every avenue open to them to fight the Commissioner’s opinion.

Question 7
Do you suggest any change to the definitions in the Act relating to health services?

The AWHC agrees that there is a good argument to be made for clarifying and simplifying the definitions of “health services, “health care procedure,” “provider,” and ”consumer.” However, any changes or amendments must ensure that consumers are covered by the HDC Act and Code under all possible scenarios.

The AWHC is also concerned at the current Commissioner’s belief that the Ministry of Health does not fit under any of these definitions and this must be remedied to make it abundantly clear that the Ministry of Health is in certain scenarios – eg driving vaccination campaigns, insisting on being the sole provider of health information, the Medsafe website, etc – responsible under the HDC Act and Code of Consumers’ Rights.

Question 8
Are the definitions in the Act relating to disability services appropriate? If not, what changes do you suggest?

The AWHC agrees that the definitions relating to “disability services” and “disability services consumers” may need to be amended if changes are made and a designated Disability Commissioner is appointed.

This is further argument for the need to keep the reviews of the HDC Act and Code at 3 – 5 years in order to enable further amendments and fine tuning to be made in a timely manner following the introduction of changes.

Question 9
Do you agree that the Office of the Health and Disability Commissioner should be renamed the “Health and Disability Commission?”

Yes.

Question 10
Do you support clarifying
the status of Deputy Commissioners pending possible reappointment?
The AWHC supports the proposal to amend the HDC Act in order to provide greater clarity about the process of appointing Deputy Commissioners.

Question 11
Are the functions of the Commissioner appropriate? Is not, what amendments do you suggest and why?

In its submission on the 2004 Review the AWHC wrote:
“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…

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.”

Because there has been very little improvement in the way the health system continues to operate, the AWHC’s position remains unchanged. The Council has not seen any significant changes in the HDC as a result of the consumer forums held several years ago, and the Consumer Advisory Group appears to be just window dressing.

Furthermore, the Council would argue that as there are now robust processes that are working well for dealing with complaints, it is time for the Commissioner to move into policy areas around the protection of consumers’ rights within the broader health system. The current roll out of screening programmes and the vaccination campaigns being under-taken by the Ministry of Health are just two examples of this need to focus on systemic issues.

The comments made by the AWHC In 2004 are unfortunately still as relevant today as they were five years ago:
“The AWHC would like to see the Commissioner taking a higher profile role in advocat-ing 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.”

Question 12
Do you think that the Act should be amended to require the HDC to refer all complaints about registered health practitioners to the relevant registration authority?

The AWHC agrees with the suggestion that all complaints about registered health practitioners received by HDC should to be referred to the relevant registration authority, with the proviso that this should occur once the HDC has investigated the complaint and dealt with it.

Question 13
Should section 38 of the Act be revised to better reflect its purpose?

The AWHC does not believe that changes to this section of the Act are really needed.

Question 14
Do you consider it is necessary or desirable to amend the provisions of the Act governing the Commissioner’s investigations? For example, by giving complainants the opportunity to comment of the Commissioner’s provisional opinion even if it contains adverse comment about the provider(s), or by setting prescribed timeframes?

The AWHC supports consumers getting as many opportunities for input into the process as the provider prior to the Commissioner forming a final opinion. The current process is unfairly balanced in favour of the provider. The Council therefore considers it necessary to make the appropriate amendments.

Question 15
Do you suggest any amendment to the Act in relation to the Commissioner naming providers found in breach of the Code?

As clearly stated in the AWHC’s previous submission on the HDC’s Naming Policy consultation document, the Council supports naming all providers found in breach of the Code. We therefore recommend that the Act be amended to include a specific section allowing the Commissioner to name all providers.

The Council also supports the proposal to amend the Act to give the Commissioner the power to suppress identifying information relating to parties not found in breach as well as parties found in breach prior to the conclusion of all processes.

Question 16
Do you agree that the fine for an offence under the Act should be increased? If so, do you agree that the maximum fine should be $10,000?

The AWHC agrees that the maximum fine should be increased from $3,000 to $10,000.

This is yet another argument for the need to keep the reviews of the HDC Act and Code at 3 – 5 years in order to enable the fine to be regularly increased to keep pace with inflation.

Question 17
Do you consider that ethics committees should be under the oversight of the HDC?

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.”

In its submission on the 2004 review the AWHC wrote:
“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.”

The AWHC’s position on this issue remains unchanged, as indicated by the article that appeared in the November issue of the AWHC newsletter titled “NZ Ethics committees in trouble.” Copy attached to our submission.

Question 18
Do you consider that the Act should be amended to provide independent expert advisors contracted by HDC with the same degree of immunity enjoyed by “members, office holders or employees” under the Crown Entities Act?

The AWHC strongly supports amending the Act to provide expert advisors with the immunity under the Crown Entities Act.

Question 19
Should the Act be amended to allow information obtained during an investigation to be withheld, while the investigation is ongoing?

The AWHC supports amending the Act to allow information to be withheld during the investigation process.


Review of the Code of Consumers’ Rights

Question 20
Do you think any of the above Code rights should be amended?


· Right 1 – the addition of compassion
The AWHC is strongly supportive of the campaign to include the addition of the right to compassion as part of Right 1. The Council therefore recommends that “Right 1: Right to be Treated with Respect” is amended to “Right 1: Right to be treated with compassion and respect”.

We further recommend that an additional clause be added under Right 1,
“(4) Every consumer has the right to have services provided with compassion, including a prompt and humane response to distress, pain and suffering.”

The AWHC totally agrees with the statements made by the Centre for Compassion in Healthcare:

“Compassion is defined as “the humane quality of understanding suffering in others and wanting to do something about it”.

We believe that caring and compassion are core values that motivate health professionals but our institutions and professions have evolved in ways that limit the expression of compassion. While the majority of health consumers are satisfied with their care, the increasingly technical nature of healthcare means that some consumers have experiences of healthcare that can feel thoughtless or uncaring and that fail to recognise or attend to distress and suffering. We need to restore the balance between clinical treatment and compassionate caring.

While it may be hard to define a standard for compassionate caring, a lack of compassion is easily recognised when the basic human needs of health consumers are disregarded. This neglect is apparent when pain and suffering is ignored, when waiting is unexplained, when consumers are left cold or hungry or left to lie on soiled linen, when consumers are addressed with unfeeling detachment, when emotional needs are brushed aside, when apology or support is denied, and when hope is needlessly extinguished. The test of the Code of Rights is in the breach. The lack of compassion is usually obvious.

On the positive side, compassionate caring is defined less by the act than by the emotional response of the consumer and family – the experience of loving kindness and the relief of pain, fear and suffering.”

The AWHC does not support the argument that the right to be treated with respect (Right 1) and the right to be treated with dignity (Right 3) covers the concept of the right to be treated with compassion.

· Right 5(1)
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 is particularly 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.

· Right 7(4)
The AWHC recommends that the provisions set out under Right 7(4) remain exactly as they are. The AWHC does not support the amendment of Right 7(4)(a)
“It is in the best interest of the consumer, or in the case of research, is not known to be contrary to the best interests of the consumer and has received the support of an ethics committee.”

· Right 7(6) Written consent
The AWHC recommends that the provisions set out under Right 7(6) remain exactly as they are. The Council does not support any attempt to weaken or reduce the need for written consent. In fact the AWHC believes that there are currently situations where written consent is not required and it should be, eg written consent for HIV screening during pregnancy and labour.

· Right 7(10)
The AWHC remains outraged that the present Commissioner supported a significant amendment to Right 7(10) of the Code without consultation with consumers. The AWHC notes that following the first review in 1999 then Commissioner Robyn Stent was “not persuaded that Right 7 (10) should be amended.” Yet researchers/health professionals were able to overturn the Commissioner’s very sound judgment on this issue.

The AWHC believes that there is a need to reverse the change made to Right 7(10) for a variety of reasons, not least because ethics committees no longer offer consumers the kind of protection they did in the immediate aftermath of the Cartwright Inquiry.

As stated in its previous 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 health and disability services consumers.

As noted in previous submissions, 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 21
Do you agree that section 47 should be amended to clarify that the Director of Proceedings may take action only upon referral from the Commissioner?

The AWHC supports amending sections 47 and 14(1) of the Act to make it clear that the Director of Proceedings may take action only upon referral from the Commissioner.

Question 22
Should the Director of Proceedings have the same powers as the Commissioner under section 62 until a decision has been made pursuant to section 49 to issue proceedings?

The AWHC supports the Director of Proceedings having the same investigative powers as the Commissioner for the period from referral until a decision has been made under section 49 to issue any proceedings.

Question 23
Should the Director of Proceedings have to make a decision to issue Human Rights Review Tribunal proceedings within a certain timeframe, after which point the Director might be deemed to have “failed” to bring proceedings?

The AWHC recommends that there should be no timeframe on the Director of Proceedings’ decision to issue Human Rights Review Tribunal proceedings.

Question 24
Should an aggrieved person be able to bring proceedings where the Director of Proceedings has decided to withdraw a claim, or reverses an initial decision to issue proceedings?

Yes.

Question 25
Should the Act be amended to state that any limitation period under the Limitation Act should start to run from the date on which the Commissioner finds a breach of the Code? If so, how long should the Director of Proceedings or individual person have to bring a claim once the Commissioner has found a breach?

The AWHC supports a limitation period of 2 years that starts once the Commissioner finds a breach of the Code.

Question 26
Should the term “aggrieved person” be defined? Should it be limited to health or disability services consumers?

The AWHC supports there being a definition of the term “aggrieved person,” with the proviso that it is not limited to a consumer, and that it should not be interpreted in an unduly restrictive manner.

Question 27
Do you suggest any amendment of the Act in relation to the Commissioner’s jurisdiction over disability services?

As stated in response to Question 2, the AWHC believes that changes must be made to the HDC Act that would allow complaints relating to access to services, including how services are accessed and funded, to be taken to and investigated by a designated Disability Commissioner based within the office of the HDC.

Question 28
Do you think a Disability Commissioner with a dedicated focus on disability issues and services should be created within HDC?

Yes – refer to comments made in response to Question 2.

23 February 2009
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