A voice for women's health

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

SUBMISSION ON THE REVIEW OF THE HEALTH & DISABILITY COMMISSIONER ACT 1994 & CODE OF RIGHTS - 2014

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 and third Reviews of the Act and Code in 2004 in 2009. The Council notes that some of the issues we raised and the recommendations we made in our 1999, 2004 and 2009 submissions are – 15 years later – still relevant and we have therefore chosen to reiterate them.   

Question 1
Do you think that the Act should be amended in any way?

Retain the 5-yearly review
The AWHC recommends retaining the provision of a 5-yearly review of the Code. Consumer groups have ongoing concerns and it would be unacceptable to have to wait a decade before being provided with the opportunity to have our concerns addressed; for example, concerns such as the need for timely and effective resolution of complaints about disability support services, the emergence of new issues such as off label prescribing and the use of medical devices that do not have FDA approval and fall outside of existing monitoring and safety standards, and when the HDC refuses to undertake an investigation into such issues. 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 and 2009 review processes 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 former Commissioner without consultation with the public/ consumers.   

Ethics committees
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.”

Since the 2009 review, the AWHC’s position on this issue has been reinforced by 4 – 5 years of two of our members attending HDEC ethics committee meetings. The role of ethics committees in protecting the interests and well-being of research participants is no longer at the centre of how ethics committees operate. The interests of the researchers and the promotion of clinical trials are now central to the ethical committee review process.

Advocacy services
The AWHC believes that the current contracting model for providing advocacy services is not appropriate and that changes are needed. 

The Council supports a change that would result in 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, and the current Commissioner doing the same thing, 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.

Naming providers found in breach of the Code
As clearly stated in the AWHC’s submission on the previous Commissioner’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 amending 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.

Amendments arising out of the 2009 review
The AWHC supports the last three of the proposed amendments arising out of the 2009 review, but as already noted above we do not support the first one.

Question 2
Do you think that the Code should be amended?
The AWHC supports reversing the change made to Right 7(10) of the Code of Consumers’ Rights. It should read “No body part or bodily substance removed or obtained in the course of a health care procedure may be stored, preserved, accessed for research purposes, or used otherwise without the informed consent of the consumer.”
The need for this change is the increasing amount of research and clinical trials that are now being undertaken on body parts and tissue samples without the knowledge or consent of the consumer. The environment has changed dramatically in the past 5 – 10 years to such an extent that those in the clinical trials and pharmaceutical industry are now able to make large amounts of money from research on tissue samples that are being accessed and used without the knowledge or consent of patients. 

The AWHC remains committed to the statements made in our submission during the 2009 Review of the HDC Act and Code. They are as follows:  

•    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 during labour.

•    Right 7(10)
The AWHC remains outraged that the former 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 judgement 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.

5 February 2014

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