Consumers' Code of Rights
If you are like me, you will be vaguely aware of the Code of Rights for consumers using the health system. You will have seen the tomato-coloured posters on waiting room walls entitled “Your Rights” or “Ou Tika”. You'll largely ignore them although you have been known to fire off an emotive email to a hospital department at times.
Now that I’ve looked at them closely, I realise that they are very simple and sensible and if you think the Code of Rights has been breached, you can take one of four actions of increasing seriousness:
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Talk to the people who treated you or your family member
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Write a letter or email to the DHB
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Contact a local Health and Disability Commission advocate (more about this later)
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Write to the Health and Disability Commissioner
There are ten rights, that’s all and we should all be aware of them, especially those of us dealing with cancer or other serious illnesses. “Cancer isn’t a third person disease,” as e-Patient Dave would say. Anyone could get cancer and have to deal with the health system. These rights are precious, and unique to New Zealand.
Here’s a brief summary of the rights stipulated on the poster above - not the full details but easy to get your head around.
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Respect and privacy
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Fair treatment
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Dignity and independence
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Appropriate standards
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Effective communication
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Information
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Choice and consent
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Support
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Rights during teaching and research
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Your complaints taken seriously
History: the Cartwright Report
The Code was written after the Cartwright Report in 1988 and became law in 1996.
The Rights were designed to improve the power imbalance between patients and doctors and were later extended to include all health and disability consumers and providers.
Judge Sylvia Cartwright’s report was based on one of the biggest scandals in New Zealand health history, the “unfortunate experiment” conducted by a gynecologist at National Women’s Hospital in the 60s and 70s (pictured). Numerous women had pre-cancerous lesions on their cervixes observed but not removed so that the doctor could prove his theory true - that not all carcinoma in situ turns into full blown cancer. The women were not informed, did not give consent, were not encouraged to ask questions, were not treated with respect and a number died avoidable deaths from cervical cancer.
How the service works
The formal name for the Code is “The Code of Health & Disability Services Consumers’ Rights”.
The 1994 Health and Disability Commissioner's Act set up a Commissioner to craft and oversee the legally enforceable Code of Rights - as well as advocates to be on the side of patients/consumers.
A nationwide advocacy service was established to assist consumers who feel their rights have not been respected. There are 48 advocates around the country in 25 community based offices from Kaitaia to Invercargill.
HDC = Health and Disability Commissioner. As well as the 48 patient advocates there is a Health and Disability Commissioner who looks at more serious breaches. Their website has three branches: the Commissioner, the local advocates and the Director of Proceedings who is in charge of the legal side of complaints, http://www.hdc.org.nz/
Complaints made to the HDC, once resolved, are posted on the website (without names or any identifying details) and make for some interesting reading.
Lodging a complaint via your DHB
if you don't feel comfortable talking to the people directly concerned, you can complain to the DHB. You can ring and ask for the complaints or feedback section or find the information online. Some DHBs have an online form to fill in; others ask you for an email or letter. Below is the appropriate section from the ADHB.
Compliments and complaints, ADHB
If you have a compliment or a concern about a service or care that you or a family member received at Auckland DHB, please let us know. We welcome all constructive feedback because without it we cannot continually improve our services or share positive stories with staff. You can either speak to those providing your care, or the charge nurse or midwife on the ward or clinic where you are being treated.
If you feel uncomfortable talking to these people, or you have a concern and aren’t satisfied with their response, please contact our Consumer Liaison Team:
Email: feedback@adhb.govt.nz
Phone: 09 375 7048
Mail to: Consumer Liaison Team, Auckland DHB, Private Bag 92024, Auckland Mail Centre, Auckland 1142
If you prefer you can also contact the Health and Disability Commissioner (HDC) on: 0800 112 233 or complete the HDC's online form: http://www.hdc.org.nz/
Wherever you are, you need to provide your contact details, hospital number, identify yourself and your treatment, tell what happened, when and where. Follow this up with what you would like to be done about it. Ask for an acknowledgement/apology. (Most people want to ensure that the same breaches of patients' rights don't happen to someone else.) Try to keep to the facts but provide a context for them. Look at the Code of Rights to see where you treatment did not meet those criteria.
Below is a sample complaint letter in PDF form.
Asking an HDC advocate to help
This is the next option up in terms of intensity but it is not scary. It really isn't. The independent advocates are there to help you. They can even advise you on how to advocate for yourself. They can help you sort issues out with the provider. As you can see there is a group of advocates in all parts of New Zealand.
An Auckland advocate spoke to the Auckland Support Group in 2015. You can see a summary of her talk in the PDF of the newsletter below the map.
Keliie Dore, HDC advocate, spoke to us in 2015: Newsletter%20with%20Advocacy%20Story.pdf
Conclusion
Next time, you peer at the notices in the waiting room, be grateful that New Zealand has a Health and Disability Commissioner and a unique Code of Rights. This year, on 1 July, very soon, these Rights will be celebrating their 21st birthday. On this date 1996, our Code of Rights came into effect. Worth thinking about.
And remember that you can do the opposite of complaining if you feel that a health provider has gone above or beyond the call of duty. All DHBs like positive feedback too and have places on their sites for you to say thank you.
It's all about making our health system serve all of us. It's about people as you can see from the logo below. Maureen
Comments
FYI, there has been a fairly large reducion (6 I beleive) in the number of HDC Advocates in the past year, for instance we no longer have Bronwyn Hughes in Wanganui, she resigned last Christmas.
The HDC have reduced their support to the patient, little by little each year - it's not that the percentage of complaints have decreased at all, it's that the number of cases accepted by the HDC have been more and more difficult to have investigated by the HDC - therefore fewer prosecutions. It's simply not working as it was intended.
The medical professionals who are prosecuted should pay the full costs of the HDC, not a percentage that reduces as they admit to each charge against them. Also the fines that are imposed are for their own "re-training", nothing more. No consequences for action(s) or inaction(s) therefore no justice for the patient.
As soon as the patient's case is taken on by the HDC the patient is no longer "in charge" as it's not the patients case anymore, it's the HDC's case.
Then, if the patient is lucky, the HDC will pass the case on to the Director of prosecutions (DOP) but it's now the DOP's case and still not the patients. The patient has no say in any evidence presented. It's all worked out in "the legal bundle" that the DOP and the legal council (who represents the medical professional) and it's up to them what is presented to the Tribunal - if it ever gets there.
This is the case of Keith Hindson (the patient), and the withholding of a cancer diagnosis and mismanagement of a cancerous tongue lesion by an oral maxillofacial surgeon (OMS), Peter Napier Liston, at Wanganui hospital. Named members of Wanganui hospital staff were also aware that Mr Hindson was a cancer patient but they did not inform Mr Hindson. Wanganui hospital was "repremanded" by the HDC on 2 counts of the patients rights charter but they were not prosecuted. How Wanganui hospital escaped prosecution in theis matter is a mystery, not even the HDC can explain why, we have asked but we have not received clarification from the commissioner, Mr Anthony Hill, HDC.
For those who want to check out the official prosecution the case, in full, it can be read on these links:
HPTD:
https://www.hpdt.org.nz/ChargeDetails.aspx?file=Den17/387D
HDC:
https://www.hdc.org.nz/decisions/search-decisions/2018/14hdc00828/
HDC code for above case : 14DC00828
Full decision PDF 581kb
Case note DDF 261 kb
Wanganui hospital:
Initially, Trish Newton of Wanganui hospital stated (in an email dated 20/2/2018) that quote "Once HDC releases their report we will publish this on our website", we therefore expected that they would publish the HDC findings on their website as they stated, quote "we will" not "we might".
We were invited to meet (in a face to face meeting) with the newly appointed CEO, Russell Simpson (on 2/3/2018) regarding the case and Wanganui hospital's stance on the situation. Nothing was acheived at the meeting as the CEO had already made up his mind that to say sorry would make it all better and that we would be satisfied with that, stop complaining and just go away.
Subsequently, on 28/3/2018, we received an email from Louise Allsop of Wanganui Hospital, quote: "We have made the decision not to publish HDC decisions on our website as the documents are not ours to publish. The documents are not owned by us, they are owned by HDC who make the decision when and how to publish on their website. The same decision applies to any other agencies’ documents, including the Health Practitioner’s Disciplinary Tribunal (HPDT)".
This is pure smoke and mirrors, they have set a president by publishing HDC cases in the past. Now the hospital either have a block on my email requests for information or they just plain ignore them. I have had no response to any email since then, what about the rights of patients to a response ?
At present we have a website which could solve all these problems in one fell swoop. It's called Whitecoat, it's a new website that wants to give patients choices.
I do not support the position of Ian Powell, the present Executive Director of the Association of Salaried Medical Specialists (ASMA) on the subject of the proposed website called “Whitecoat” – access has been blocked. Mr Powell, said the launch of Whitecoat.co.nz raises “serious concerns” about the fair treatment of doctors.”
What about the fair treatment of patients Mr Powell ? Is it fair that patients suffer at the hands of such medical professionals Mr Powell ? What about the Patients Code of Rights Mr Powell ?
If there are no consequences for a medical professional, whether due to their action(s) or inaction(s), then there is no justice for the patient therefore the Patients Code of Rights is rendered useless and not worth the paper it was written on.
I would like to offer my support to Matthew Donnellan, CEO of Whitecoat, a new website that will allow a patient to choose a medical professional on past performance. The solution may be a simple one, make it like a credit rating, if a medical professional is not “up to scratch” then they don’t get a “credit rating.” Maybe Mr Donnellan has got the answer –– but only if the block on the website is lifted by the authority who has blocked it. Who would that be ? Who does know ?
Rabbie Burns, the Scottish bard said, quote “freedom an' whisky gang the gither !” (for the uninitiated that means freedom and whisky go together), just like “crime and punishment”.
I base my opinions and comments on the injustice of a system that leaves a patient maimed, a life (or lives) shortened and a future ruined because that system endorses a biased approach of “no consequences” for the medical professional, regardless of what their action or inaction was.
This is similar to the ACC problem, another "fuzzy, one size fits all" idea that firts nobody and is disfunctional at best and biased to the medical professional - basically an insurance policy that protects them from being sued. Show me the justice in that.
That's good. I complained once using the form on the website, and once with the help of our GP.
Great work. This is an excellent resource for all our people. Thank you.