Scott Lynda: Health (Screening Programmes) Amendment Bill — First Reading 
Scott Lynda: Health (Screening Programmes) Amendment Bill — First Reading 
[Volume:606;Page:3496] 
Dr LYNDA SCOTT (NZ National—Kaikoura) 
: 
 It is with pleasure that I rise again to continue my speech on the Health (Screening Programmes) Amendment Bill. I was last in this House debating the first reading of this bill on 15 October 2002 so it has taken a very long time for this bill even to make it through a first reading stage to be sent to the Health Committee. I think that shows how slowly things are moving in this Parliament. The issue and views that will be expressed about this bill will be a cry from some members of the public for openness versus the need for a professional low-key review of screening programmes.  
The reason reviews and audits are needed is to ensure that screening programmes are working appropriately. This bill is to assist the operation and evaluation of the National Cervical-screening Programme but it can be extended to other programmes in the future. The basis of this bill goes to the heart of two matters: the need for informed consent and the need to pick up faults and deficiencies of an individual or systemic nature in any programme. Informed consent gained major prominence with what became known as the “unfortunate experiment” and the Cartwright inquiry into cervical cancer treatment. The 1995 regulations relating to cervical screening forbid the disclosure of any protected information and this is at the heart of the informed consent issue. When a woman goes to have a cervical smear she signs up to a register. Certainly when I signed up to the register I thought it meant that my information could be looked at. However there seemed to be uncertainty about the ability of an auditor to access the information and audit the national screening programme. So although individuals may have thought that they were consenting for an auditing of the screening programme when some of the powers that be looked at the situation more closely they felt that was not the case and a great deal of debate around the law occurred.  
The results of not auditing were clearly shown by the under-reporting of cervical smears in the Gisborne region and those centred on the practice of one doctor. Dr McGoogan who did the external investigation into the Gisborne cervical smear situation outlined the essential components of a screening programme that were lacking and those included: no compulsory equality assurance for laboratories; poorly designed management structure with split responsibilities; and no central computerised registration. There was a failure to gather reliable relevant statistical information to monitor and evaluate all parts of the programme’s performance routinely and to have the appropriate legal powers. That is why we are here in the House today debating the Health (Screening Programmes) Amendment Bill. We are talking about changing and correcting those problems so that the legislation that currently regulates the programme and which is prohibiting valuable information from being collected will be changed. That information is required for monitoring and evaluation and it needs to be able to be disclosed to an independent evaluation team. 
The bill once passed will give the ability to monitor and evaluate any screening programme effectively. This means that evaluators can look at patient notes and check for those patients who may have gone on to develop invasive cancer. We have a very high death rate from cancer in this country. I encourage anyone in New Zealand who is listening to accept screening programmes and get themselves screened under cervical screening and breast-screening programmes because it does reduce the cancer death rate. But we do need to be able to audit how well those screening programmes are able to improve the situation. There are false positives and false negatives in a screening programme. That means that sometimes a positive is not actually a positive or sometimes something is missed and although the result looks like a negative it is actually a positive. It is not an absolutely exact science. That is why some doctors are worried. In this name-shame-and-blame culture that we are trying to change but that still exists in New Zealand to some extent they are worrying that they individually may be held accountable for systems errors.  
The ministry has a desire for open audit and that means that it has needed to negotiate carefully with the medical profession over the issues. I am sure we will hear from both groups when the bill goes to a select committee. National supports the bill in its first reading. 
STEVE CHADWICK (NZ Labour—Rotorua) 
: 
 I am pleased to be speaking in the interrupted debate on the first reading of the Health (Screening Programmes) Amendment Bill. It has certainly been interrupted—from May 2002. So it is quite difficult picking up on these bills again. This bill is a direct result of the Gisborne inquiry that occurred in April 2001. The inquiry very clearly concluded that by far the most important stage required to make the National Cervical-screening Programme fully effective is the removal of legal barriers that are preventing the comprehensive evaluation of the programme from proceeding. The removal of those legal barriers was definitely what we looked at and moved very quickly on by way of this bill.  
The National Cervical-screening Programme began in 1990 as a direct result of an area health board approach to population health-based planning. It was a very extensive programme which I was very aware of in the Bay of Plenty. It was all about setting up a programme register that recorded laboratory tests and smears from colposcopy findings and held all recordings from laboratories hospitals and cancer registers. The point of this bill which very clearly arose from the Gisborne inquiry is that we really need to make sure that women are informed about what happens to their cervical-screening results their actual smears their cell samples and any subsequent follow-up and treatment. It did set up the cancer register for cervical-screening. The point is that all women are automatically enrolled on the screening programme—that is all their results. We do want women to have the right to opt off any screening register. If they opt off then all that is left behind is minimal contact details so that we can follow up those women.  
The purpose of a screening register is that one day it can be extended to cover other health issues. This matter was certainly raised during the Parry inquiry that I was on but at this time the Government has no plans to extend the cancer cervical-screening register to other conditions. However at that stage in the Parry inquiry Phillida Bunkle consistently supported the establishment of a general and comprehensive national cancer register.  
The screening programme was very innovative when it was first established. It was part of a Labour-led initiative following on from population-based programmes that were set up by area health boards. It looked at health promotion smear taking the purpose of taking biopsies and the management—that was the important thing—of abnormal smears. We need to be reminded that 220 to 240 women suffer from cancer of the cervix each year. The major issue for us is that of informed consent with the practitioner and that is addressed in the bill. When a woman decides that she needs a smear taken by her general practitioner her midwife or a practice nurse—in fact there are 5500 smear-takers—it is very important that the smear-taker informs the woman about what will happen with the results of her smear and that she will be part of a large population-based programme. Those programmes will only ever be effective if we have really high levels of enrolment and coverage over a wide area. 
Then we need to ensure that we have really high-quality screening and very very good follow-up services. The ultimate aim is to have regular evaluation of the programme to make sure that it is happening as we envisaged it would. Forty-six recommendations came out of the Gisborne inquiry. Annette King had also enlisted the services of Dr Euphemia McGoogan to review the evaluation of how well those recommendations were being implemented. At the same time a Ministry of Health audit was looking at the histories of about 350 women with invasive cervical cancer from January 2000 to September 2001.  
When we look at the statistics of this disease it is very important to note that cancer of the cervix is one of the most preventable forms of all cancers and 90 percent of cases of common cervical cancer are preventable if detected at an early stage and then treated appropriately. In the 10 years from 1987 until 1997 cervical cancer rates dropped by 39 percent but the number of deaths dropped by 44 percent. The programme itself has gone through substantial improvements over the last 3 years as a result of various inquiries and also the Ministry of Health’s approach to continuous quality improvement but several more steps need to be undertaken.  
In conclusion I urge that we cannot continue to watch the numbers of women who develop cancer of the cervix each year and do nothing more about it. The whole rationale for the Gisborne inquiry the Parry inquiry and the Ministry of Health inquiry has to have been to improve the programmes that we currently have in place. Further steps are needed to back up the programme and we are undertaking those with the support of the ministry. This bill will be another step along the way to ensuring that we can treat the disease early that women are well informed about what happens with their health record and that practitioners in the field researchers and evaluators can access records and make sure that treatment is the very best that New Zealand can offer those women. We need to make really sure that all women understand that they are automatically enrolled in the cervical screening programme that they do have the right to opt off with minimal contact being left on the register and that under the provisions of this bill external researchers and evaluators will have access to the records to make sure that the programme which should be comprehensive is being undertaken. Therefore I support the referral of this bill to the Health Committee.