Dáil Éireann debate -
Tuesday, 25 Mar 1997

Vol. 476 No. 7

Private Members' Business. - Health (Provision of Information) Bill, 1997 (Seanad): Second Stage.

Question proposed: "That the Bill be now read a Second Time."

Minister for Health (Mr. Noonan,

Limerick East): I am pleased to introduce the Health (Provision of Information) Bill, 1997, to the House. This Bill is but one of a number of elements of the national cancer strategy which I launched last November and which will for the first time provide for a co-ordinated and integrated cancer service.

Deputies will be aware that on 4 March last I announced details of an action plan which will fund and implement the cancer initiatives proposed in the national cancer strategy. The action plan commits the Government to putting in place the necessary funding to support the various measures which will further improve the prevention, early detection, treatment and palliative care services for cancer. The main elements of the national cancer strategy include reorganising cancer treatment services to promote a strong patient focus and ensure equity of access throughout the country, devoting resources to screening and early detection programmes of proven value, using health promotion activities to emphasise further the importance of healthy lifestyles, developing specialist pallative care services on a phased basis and facilitating greater co-ordination of cancer research.

The detailed features of the action plan which describes how the strategy will be implemented include plans costing an extra £6 million this year for the development of cancer services in each region. The plans include additional consultant appointments for treatment services, development of palliative care and funding for research. Regional directors have been appointed to coordinate services and develop a cancer plan for their region. Further funds will be allocated in 1998 and 1999 to implement all of the provisions of the strategy. A national cancer forum, will be appointed as promised in the national cancer strategy. Expert bodies will be established to steer the implementation of national programmes of screening for breast cancer and cervical cancer and legislation will be introduced to ensure that the breast and cervical screening programmes comply with data protection requirements. The legislation before the House will ensure that efforts to establish the proposed screening programmes can proceed as quickly as possible.

In Ireland, cancer continues to be one of the major causes of death. It accounts for some 7,500 deaths every year, or one quarter of all deaths. In the under 65 age group the proportion is even higher, at one third of all deaths in this group.

Deaths in the under 65 age category are described as premature mortality. Many of these deaths can be prevented. With this in mind the national cancer strategy focuses on steps to reduce premature mortality from cancer. It reiterates a key target set in the national health strategy, published in 1994, namely, to reduce the deaths in those aged under 65 years by 15 per cent in the ten-year period to 2004.

Of all deaths from cancer in those aged under 65 years, breast cancer accounts for nearly 10 per cent with approximately 660 women dying each year from the disease. Cervical cancer accounts for a further 60 to 70 deaths each year. Expert advice is that between 20 and 30 per cent of deaths from breast cancer among women aged over 50 years could be prevented if a quality mass screening programme were established. International studies indicate that programmes should be aimed at women aged between 50 and 64 years. To date there is little evidence to support breast screening among women under 50 years of age.

In the case of cervical cancer, there is evidence that, where a pre-malignant condition known as CIN is identified, it can be treated with almost 100 per cent success. The fact that CIN usually precedes cervical cancer and can be identified is obviously very important.

While there continues to be an ongoing debate about the efficacy of different screening programmes, there is a high level of consensus within the medical profession on the value of screening programmes for breast and cervical cancer. The potential value of screening programmes for these particular cancers lies in their ability to reduce significantly the number of deaths from the disease where early diagnosis can be identified. It is recognised that in developing any such programmes they must be carefully organised. Ensuring that only the highest quality practices are used will also help to secure the best results.

We have already built up a high degree of expertise through the valuable pilot programme of screening for breast cancer, known as the Eccles breast screening programme, which began in 1989. This programme, which was funded by my Department, was organised by the Mater Foundation. The experience of the pilot programme will be very valuable now that we are moving to establish a national programme. The Eccles breast screening programme underlines the importance of organising screening carefully on a phased basis so that the lessons of each stage can be taken into account before the next phase proceeds.

In relation to screening for cervical cancer, we are fortunate to have the report of an expert multidisciplinary group of health professionals available. This report was also published with the national cancer strategy last November. The report of the working party on cervical screening recommended that a national programme of cervical screening should be established for women in the 25 to 60 age group. I have taken on board the recommendations of the expert committee and have now established an advisory committee to oversee the implementation and monitoring of a national programme. Based on the valuable and practical experience which was gained by running a pilot programme for breast screening, it is considered important to run a pilot cervical screening programme in the first instance to ensure that the national programme operates in the most effective manner.

Having accepted the medical evidence that the time is right to proceed with national screening programmes for breast and cervical cancer, we are faced with the issue to ensuring that the current legislation relating to data protection is complied with. That is the principal purpose of the Bill before the House.

Expert advice is that both programmes can only operate effectively if population registers can be established and regularly updated. The purpose of the population register is to have the names and addresses of women in the target age group so that they can be invited for screening. The intention is that women will be invited to attend for screening as soon as they reach the appropriate age and therefore the registers will need to be updated constantly. The women's details can then be retained on the registers until they move outside the target age group but the first concern is to ensure that we can identify all women who should be offered screening for the first time.

No such population register is available for this purpose at present. Therefore, it will be necessary to draw upon data from a number of existing sources such as the GMS Payments Board, the Department of Social Welfare and health insurance companies. The names and addresses of women must be obtained from these sources and used to create a national population register for the age groups concerned. However, under current data protection legislation it does not appear to be possible for these sources to pass personal details to a third party such as a screening programme. An important principle of data protection is that personal information, such as the names and addresses of individuals, should be used only for the purpose for which it was originally collected. There can be little argument that, in this case, the information is required for a very important public health purpose. However, legal advice available indicates that specific legislative authority is required before we can proceed.

Before dealing with the sections of the Bill, I want to remind Members that the cancer screening programmes and the National Cancer Registry Board, with which I will deal in a moment, will be subject to the Data Protection Act in how the information collected is stored and used.

Section 1 of the Bill provides that an organisation participating in any programme of breast or cervical screening authorised by the Minister for Health may request information from any person regarding names, addresses and dates of birth so that, for public health reasons, women may be invited to participate in that programme. The section enables any person requested to provide information for this purpose to do so. The key points to note are as follows: the screening programme must be authorised by the Minister for Health: the information must be requested for the purposes of compiling and maintaining a record of persons who may be invited to attend for screening and the purpose of the screening is for reasons of public health. The section is enabling rather than mandatory: it does not require any person or agency to provide the information requested. However, agencies such as the General Medical Services Payments Board and the Department of Social Welfare would be expected to co-operate fully in such important programmes of screening for cancer.

Members of the Seanad — where I introduced this Bill — made a very valuable contribution during their debate on 13 March. One of the key issues raised was whether we should restrict provisions relating to cancer screening to breast and cervical cancers or make a similar provision in respect of other types of cancer.

The scope of the Bill was first raised in the context of screening for prostate cancer but, as I pointed out, it could equally arise in the case of other cancers if effective screening programmes for them became available. With this in mind I suggested it would be appropriate to frame the amendment in a manner sufficiently wide to apply to other screening programmes provided they had been proven to be medically effective. I undertook to consult the Attorney General's Office on the most appropriate wording.

I will table an amendment on Committee Stage to extend the data protection provisions for breast and cervical cancer, contained in the Bill as originally published, to any other cancer screening programmes authorised by the Minister for Health. I emphasise that I can give no commitment to organising or funding any other cancer screening programmes unless and until they have been proved to be effective. It would be most unwise of any Minister for Health to arrange for cancer screening programmes which have yet to pass this test.

The approach in my amendment will enable the establishment of population registers for other cancer screening programmes provided they are authorised by the Minister for Health. This authorisation would not be forthcoming unless cancer screening for that type of cancer had been established as effective.

I thank individual Senators who contributed to this debate. This amendment was generated resulting from one tabled by Senator Finneran, the Fianna Fáil spokesperson in the Seanad. I thank him for his advice and co-operation, supported by many others, including Senator Henry who also strongly urged that we cast the net slightly wider to include prospective screening programmes which may prove to be medically effective in the future.

I have also had an opportunity to consider the wording of other aspects of the Bill. As currently drafted, the Bill refers specifically to "national" programmes of screening for cancer. However, it has been pointed out to me that there may be good reasons for establishing locally-based or regional screening programmes which may or may not subsequently be organised on a national basis. Indeed, the breast cancer screening programme I have already announced will commence in three health board areas before moving, on a phased basis, to a national level. It would be unsatisfactory if the wording of this Bill operated to preclude the establishment of appropriate local screening programmes. Therefore, the amendment I will table on Committee Stage will remove any reference to "national" programmes.

I now wish to draw the attention of the House to the second major element of the Bill which will allow the National Cancer Registry Board to continue collecting important data relating to cases of all forms of cancer. The National Cancer Registry Board is a statutory body established in 1991 under the Health (Corporate Bodies) Act, 1961. The functions of the board include the collection and analysis of information in relation to each newly diagnosed case of cancer. Its main task is to gather and analyse information on the incidence and prevalence of all types of cancer in Ireland. The data it collects are very important for epidemiological and research purposes. The registry's work forms a critical part of the initiatives announced in the national cancer strategy. The registry's first national report on cancer is at present being finalised and will be published in the near future.

One of the main sources of data for the registry is provided by the hospitals sector. To ensure that the registry has a complete and detailed picture of cancer in Ireland, the information supplied by hospitals must include the name and address of each patient diagnosed. There are a number of reasons for this requirement.

First, it is vital for the National Cancer Registry to be able to trace patients across episodes of treatment in different hospitals. Its data must be consistent and accurate in this respect. The registry's own experience, and that of cancer registries internationally, is that access to the names and addresses of patients is the only reliable method for achieving this cross-matching.

Second, the registry also collects data on deaths from cancer. As part of this task it must update its records of patients diagnosed with cancer who subsequently die. Information from death certificates is used for this purpose. Again, both international experience and that of the National Cancer Registry is that it is virtually impossible to link cases currently registered with those who die from cancer unless the name and address of the patient is available.

The question of whether hospitals can supply data of this kind to the registry has been raised in the context of current data protection legislation. It is necessary to resolve any possible questions about this matter so that the National Cancer Registry can continue its important work. Failure to resolve these now could deprive the National Cancer Registry of vital sources of data. Its ability to collect accurate information would be greatly hampered and its role in helping to analyse the incidence and prevalence of cancer would be severely curtailed, which could also have implications for the registry's contribution to cancer research.

We cannot leave any room for doubt in relation to the legal basis for the National Cancer Registry's current arrangements for obtaining named patient data from hospitals. The Bill will enable the registry to continue to request this data for the purposes of any of its functions and provides that the persons requested to supply that data, in other words hospitals, may do so.

The fact that this provision goes no further than safeguarding the present position should be clearly noted. No additional powers are being conferred on the National Cancer Registry Board by virtue of this legislation.

The passing of this important Bill will have no direct staffing or cost implications. The action plan I launched earlier this month details the plans for developing cancer services in 1997 at a cost of £6 million. The full costs of the programmes of screening for breast cancer and cervical cancer are included in that action plan. The implementation of the complete set of initiatives in relation to cancer will continue in 1998 and 1999 and the full package of developments, including screening programmes, will cost an additional £25 million when all those initiatives are in place. There are no cost implications for the National Cancer Registry Board resulting from the proposal to safeguard its position in the collection of data from hospitals.

On taking office I set as a priority the improvement of cancer services. I am confident the plans contained in the national cancer strategy will deliver on this promise. The passage of this Bill will allow the programmes of breast and cervical screening to proceed and the National Cancer Registry Board to continue its important work.

I commend the Bill to the House.

Mr. Cowen

Very shortly after his appointment the Minister for Health made clear that the improvement of cancer detection and treatment services would be high on his ministerial agenda; in fact he set it as his top priority in the development of health services. He promised in January 1995 that his Department would have a policy on cancer within 12 weeks. Instead of 12, we have had to wait 100 weeks for that policy first published last November. Obviously the Minister thought it so good that, like the lyrics of "New York, New York", he decided to announce it twice, with a second launch of the strategy this month.

Cancer is a hugely important health issue here, about which there is great fear and foreboding; indeed, few words in the English language strike such terror into people. For many decades cancer was a taboo here and there are still many who hate even to say the word; they will describe it as the "Big C", the "boyo" or use some other expression rather than refer to it by name.

The rate of deaths due to cancer in this country is of the order of 7,500 annually, higher than the EU average. After heart disease, cancer is this country's higgest killer among the under 65 year olds, with 18,000 new cases recorded annually. In 1996 cancer accounted for 50,000 hospital episodes. Cancer deaths among Irish women are particularly high and action needs to be taken. Screening can play a major part in detection and I am pleased this is finally being acknowledged. However, cancer and other health matters are also major concerns for men. Up to now there has been a perception that health matters are women's issues. However, men die on average six years younger than women and prostate cancer in men is almost as common as breast cancer in women. Five times as many men die from cancer of the prostate as do women from cervical cancer. Prostatic cancer is not as well researched as any of the female cancers.

Testicular cancer is the commonest form of cancer in men aged 15-44. One in every 251 Irish men will develop cancer of the testes. One in every 32 males develop prostate cancer. Some 75 per cent of men aged over 50 have symptoms of benign prostatic hyperplasia — that is when the prostate enlarges and affects the flow of urine through the urethra. Some 25 per cent of men who live to 80 will require a prostatectomy, the surgical removal of a portion of their prostate gland.

Women have used the health services more intelligently and more frequently than men. Diseases such as coronary heart disease kill at least one in every three men. High blood pressure affects one in five. One in three gets cancer, while one in four dies from it. It is time for men to learn from women and the way in which they have raised consciousness in the past 20 years about their gender-specific cancers.

There is a great need for national breast and cervical screening programmes. Since 1989, the Eccles programme at the Mater Hospital has operated on a pilot basis. It is unfortunate it has taken eight years to get it to a national programme. Breast cancer is a major killer in Ireland. The death rate remains depressingly high and the disease eventually kills eight in then sufferers. Screening programmes targeted at women in those age groups where the risk is greatest can be effective. Early detection rates will make all the difference.

We should not have to wait as long for cervical screening as for breast cancer screening. I am disappointed to note in the cancer strategy the Minister's commitment is just to start the national programme for cervical screening not later than 1999. Many deaths will have taken place between now and then.

The Minister also needs to attend urgently to the smear test results delay. In some cases there is a delay of four months. Last month the Coombe Women's Hospital put a three-month moratorium on routine cervical smear tests in a bid to clear a massive backlog. Thousands of women should not have to wait months for results. This creates fear. The Minister must give a commitment to provide adequate backup diagnostic laboratory staff and services for this purpose. Screening programmes which take weeks or months to produce their results can be stressfully counter-productive.

The National Cancer Registry Board has existed since 1991. I am keen to establish where the concern has come from and on what legal advice the Minister is acting. I call on him to read that advice into the record. In his speech to the Seanad on this matter he said under current data protection legislation, it "does not appear" to be possible for the sources in the Bill to pass personal details to a third party such as a screening programme. Either the Minister has a definitive view or he has not. If he has a definitive view let us hear it.

The data protection commissioner noted in his 1995 report published last year the extended use of the RSI number in the interests of data sharing and data matching by public authorities was the single greatest challenge facing data protection at present. He said he has long argued "for the need for a proper legislative framework such as the Data Matching legislation which is in place in Australia and New Zealand to deal with the issues". He goes on to say:

Ad hoc arrangements, whether supported by minor amendments to existing legislation or not, are in my view an inadequate response to the real issues. Such an approach undermines the data protection principles to which we have committed ourselves on ratification of the Council of Europe Convention on data protection and does not take account of the requirements of Article 8.7 of the EU directive on data protection....

Has there been consultation with the data protection commissioner on this Bill and what is the Minister's view on what the commissioner has said in his 1995 report? It would appear the Minister is flying in the face of what the commissioner said.

Cancer machinery is a matter about which there has been some concern. I welcome the introduction of guidelines on the administration of chemotherapy. It is important to have an auditing system to ensure hospital machinery for cancer treatments functions properly and correct doses are being administered.

The National Cancer Registry is taking on a huge task but one it regards as manageable. It will have huge numbers of people to contact and locate. If the National Cancer Registry is able to do this why cannot the BTSB make contact with all the people who have received potentially infected blood or blood products? During the debate on hepatatis C the Minister said the BTSB was doing its best. Perhaps the National Cancer Registry will advise it on better procedures.

One of the reasons given by the Minister for Health for not introducing a prostate cancer screening programme is that the national health screening committee in the UK has recently concluded there is no evidence available at this time for the introduction of a prostate screening programme. Must we always slavishly follow the British advice in this area? In the hepatitis C episode, we witnessed the same situation where the Department of Health was holding on for a British decision. One reason given by Britain for not doing it was the Gulf War. Is the stonewalling on prostate cancer another issue about resources which is being dressed up in medical terms?

The Minister said the National Cancer Registry's first national report is being finalised. Is this the first report the group has produced since 1991? Perhaps the Minister could give details on its resources, staffing and work in reply to the debate.

As this stage screening is possible for many cancers. The Bill as drafted was minimalist in nature. As the Minister adverted to the debate in the Seanad, the Fianna Fáil spokesperson on Health, Senator Michael Finneran, made tremendous efforts to broaden the scope of the Bill. He rightly pointed our screening for prostate cancer should be considered. The Minister, fearing a Seanad defeat, said he would do this. He said: "I will introduce an amendment along the lines the Senator has suggested". The Minister even put forward suggested wording which included the word "prostate". However, what he has put forward is not quite the same. Prostate screening is not mentioned as an objective. There is just a wider umbrella of cancer screening offered but no specific goal to have a prostate programme.

In my amendments I have specifically mentioned the question of prostate cancer screening going ahead and the Minister should do the same. He should insert the word "prostate" in his new amendment and I will propose this on Report Stage.

My other main amendment relates to widening the medical screening provided. Many people would be scared if they received a note with a request to attend for a cancer check. If they received a note with a request to attend for a full medical, they would be less alarmed and co-operate more quickly and more fully. Coronary artery disease, high blood pressure, diabetes and many other conditions are prevalent and detectable at an early stage. People presenting for screening could also have their blood pressure taken and urine tested which would show up anaemia and any blood-related problems. In his reply in the Seanad the Minister said: "There is nothing in the Bill which prevents that — wider medical screening". I ask the Minister to accept this amendment since he agrees there is nothing in the Bill to stop it and it should be done.

The Minister's cancer strategy has been published with much fanfare and is welcome. However, there are concerns. Professor Jin Fenelly, a medical oncologist and chairman of the Irish Cancer Society, has warned the £22 million to be spent over three years will be somewhat stretched. Some £6 million of this money is to be spent this year.

We must put an end to people having to travel long distances to receive just one hour of treatment. I welcome the Minister's proposals and I hope they will be implemented. However, I note the concerns expressed by Dr. John Armstrong, medical director of St. Luke's Hospital in Dublin. He says Ireland is significantly below par in terms of the number of radiation oncologists working in hospitals. He notes that it has been over a decade since a new consultant post in the specialty was created in Dublin and that there is no specific mention of the need to create additional posts in this area in the national cancer strategy. The Minister must follow through on his proposals and take up such serious concerns. We must listen to the expert advice of eminent doctors such as Dr. Armstrong. If the cancer strategy is to make a difference it must be resourced adequately.

The Minister should also take note of Dr. Armstrong's concern that more than 2,000 Irish people, newly diagnosed with the disease each year, might not be receiving the necessary type of treatment. He says that up to 10 per cent of patients who should be receiving radiotherapy are not getting it. It is now estimated, according to international figures, that 50 per cent of all new cancer patients require radiotherapy at some stage during their illness. However, in Ireland about 40 per cent or less of new cancer patients receive radiotherapy. There is a 10 per cent deficit compared to international norms. Dr. Armstrong believes radiotherapy might be under utilised and that other treatments are being recommended instead.

In the health strategy document, Shaping a Healthier Future, a target is set to reduce the number of cancer cases by 15 per cent by the year 2004. What progress has been made towards achieving that target since 1994? Sellafield remains a live issue in Ireland. A recent conference was told that the incidence of stomach cancer in females in the north-east is 75 per cent higher than in the rest of the State while the incidence of cervical cancer is 27 per cent higher in that region. The Government has been scattered and weak in its actions on Sellafield. health issue in this country.

There have been many calls for the establishment of a sperm bank. There was widespread recent controversy when a 14 year old Irish cancer victim had to travel to the UK to freeze sperm in case cancer treatment rendered him sterile. In a recent edition of the Irish Medical News it was reported that a new national sperm freezing programme, which would be restricted to cancer patients, is expected to be sited at the Rotunda Hospital in Dublin. Will the Minister confirm that this is the case? It was also reported that a private UK clinic based in Clane, County Kildare, is planning to set up its own sperm bank. Are we now to have two such facilities having had none up to a while ago? Will the Minister clarify this aspect of the debate in so far as it affects cancer patients?

People remain concerned about foods and the links with cancer, especially following the Chernobyl disaster. It is important to have high standards and recent reports that almost half of all Irish food analysed by the Department of Agriculture, Food and Forestry in the last three years was found to be contaminated with traces of pesticides are a concern.

Health education has a major role to play in preventing cancer. It is estimated that 70 per cent of cancers could be avoided if we followed the European code against cancer. The rules of that code are: do not smoke; if one drinks alcohol, do so in moderation; eat more fruit, vegetables and cereals; avoid becoming overweight; limit intake of fatty foods and increase physical activity; avoid excessive exposure to the sun and sunburn especially in children; follow health and safety instructions on substances which may cause cancer; report any unexplained lumps, sores, bleeding or changes in moles to one's doctor; see one's doctor if one has persistent problems such as coughs, hoarseness and unexplained weight loss; women should have regular cervical smears and breast checks and, if they are over 50 years of age, participate in mammographic screening programmes. Clearly not all of these rules were drafted by an Irish person.

The issues I have raised are important. I ask the Minister to consider the inclusion of prostate screening in section 1. I do not accept that its inclusion will involve a burden on the taxpayer. In view of the fact that the scope of the Bill was widened in the Seanad, following the intervention of the Opposition, to include men as well as women, the inclusion of prostate screening programmes would ensure that it comes about more quickly than if we were to remain silent on the issue, as the Minister proposes in his amendment.

Ms Keogh

I am glad of the opportunity to contribute to the debate on this Bill. We welcome the proposed national screening programmes for breast and cervical cancer. This Bill will facilitate the implementation of the screening programmes. However, I accept the argument that the Bill should have a wider remit. It is useful to discuss the wider issues that have been mentioned and I await the Minister's response. I also look forward to hearing his reaction to the amendment proposed by Deputy Cowen.

Although I agree with extending the remit of the Bill, we must bear in mind the Bill's purpose. The word "cancer" engenders great fear. People are still extremely reluctant to go through procedures which would lessen the threat of cancer occurring. Deputy Cowen outlined a list of rules to which we should adhere and they left me quaking. Unfortunately, the only one I can claim to follow is that which directs a person not to take too much sun. The main aspect of preventive measures is that we must be aware of them. There must be a publicity campaign which asserts the importance of such measures to ensure that people take precautions. Prevention is the major aim. Part of prevention involves early detection and if people are aware of those issues the mortality risks will be significantly reduced. Prevention is essential but it is also important that people go through the procedures that are available.

A number of wider issues must be discussed in the context of cancer, particularly breast and gynaecological cancers. I am interested in what might be termed the wider care path with regard to cancer. It proceeds from prevention to screening, diagnosis, treatment and after care. There must be a continuum regardless of the type of cancer involved.

One must be aware of the preventive measures that must be taken and the screening mechanisms. However, we reach a problematical area which might not be within the scope of the Bill. A number of women will be concerned about privacy and revealing their names and other information. Many women, and possibly men, do not want people to be aware that they are suffering from the disease. They are fearful of the implications of the release of information. These issues need to be handled delicately and sensitively. A doctor told me today that she was not aware that names and addresses of patients were made available in the cancer register. This raises the issue of confidentiality. We have to balance the needs of cancer screening and the register with the sensitivity of patients. Women should not feel they have to reveal intimate information.

I welcome the wider screening programme and the implementation of the strategy because of the number of deaths that result from cancer. Breast cancer is the most common cause of mortality from malignancy, resulting in nearly 700 deaths per year. While women need to be treated sensitively, there must be a publicity programme which explains how important a screening programme is.

It is proposed to screen for cervical cancer in the 25 to 60 years age group. The Minister should take on board the different social mores. Young women in their late teens to early twenties can contract the most severe and fast spreading form of cervical cancer. I ask the Minister to address the case for screening in this lower age range. Fears about the release of confidential information arise so sensitivity in this area is called for.

Once the screening process is complete and progresses to diagnosis, we must be aware of the necessity not only for screening resources but for treatment and after-care. It is important to talk to sufferers to understand what they are going through and to reflect on their experiences so that we can give them the best care. There is a continuum from prevention to after-care.

This Bill is part of an enabling process and, because we are concentrating on a small aspect, we should not forget that the views of cancer sufferers should be respected. Their experiences should be examined so we can learn from them in the future. Unless we do this, women will be unwilling to participate in screening because of a subsequent bad experience. This will then permeate through the system. From the prevention point of view, it is essential that women participate in screening procedures which ensure that mortality rates are drastically reduced.

I am concerned that there is a degree of delay in this matter although the Minister spoke about pilot programmes, etc. I urge that procedures are undertaken speedily so that we know what works and that the lives of women who may fall through the cracks in the system at the moment can be saved. The Eccles Street pilot project was set up in 1989. Screening procedures are urgent and necessary as they can save lives.

Deputy Cowen said that women are more aware of cancer than men, which is perhaps true. It is because of the huge amount of work done by groups such as the National Women's Council. It is extraordinary that it takes campaigns by these bodies to get the health system moving and ensure that these types of proposals are followed through. This should not happen. The Department of Health should be championing these programmes. To a certain extent we are moving in that direction, but it should not be up to organisations to drive cancer information. The impetus should come from the Department of Health. At the end of the day this makes financial sense. Prevention is better than cure. It is essential that we drive these issues and ensure that people's misgivings about confidentiality are dealt with sensitively.

I ask the Minister to ensure that the initiatives he is responsible for are carried through with urgency, especially as we approach the end of this Government. In view of some of the negative events which have occurred during the Minister's term in office, he may want to have provisions on the Statute Book to ensure women's health, which I know he is concerned about, particularly in relation to cancer. I criticise the elements of delay but not his bona fides on this issue. At least he is showing a commitment to the treatment and prevention of cancer, which is to be welcomed. However, unless his initiatives are carried through urgently, they will count for little.

I would like to see the screening programme contained in the overall strategy rather than standing on its own. I would like the Minister to reassure me that there is treatment and after-care. We should reflect the needs and wants of patients, specifically of women. It is important to take the prevention issue on board. I welcome any amendment which will extend the remit of this Bill. I welcome the thrust of the Bill with some misgivings in relation to confidentiality.

Ms F. Fitzgerald

I welcome the introduction of national programmes of screening for breast and cervical cancer. This is an historic decision for the health of women. I congratulate the Minister on not just talking about it or launching a cancer strategy but making the necessary resources available. This initiative is long overdue. Research and experience in other countries has taught us that both programmes are vital if we want to protect women's health.

About four or five years ago when I was working with the Commission on the Status of Women, in a chapter on women's health — a very good one — it made the key points that any effective health policy should include a strong preventive health dimension, that there should be specific preventive strategies targeted at women, that a crucial aspect of these would be adequate screening facilities for specific cancers and that with regard to cervical cancer there should be a national campaign to publicise the importance and availability of cervical smear tests. That still holds true.

Deputies Cowen and Keogh spoke about the fear the word "cancer" generates. One of the most striking speeches I have ever heard on women's health was made by Monica Barnes at a seminar on women's health in Kilkenny when she spoke movingly about the fear and shame felt by women 20 to 30 years ago when diagnosed with breast cancer. It is still a frightening illness but woman are not silent now. The more we make programmes available to woman the more we will help to break that resistance and allay fear. There are still many barriers preventing women presenting for tests — cost, access, information and fear — but in providing national screening programmes it is more likely that women who have been screened will talk to their friends. As Deputy Keogh said, if women present themselves early enough, with good quality screening programmes for breast and cervical cancer — which can be prevented — and high quality controls, lives will be saved. These are two important programmes which will make a huge difference.

I share some of the concerns expressed in relation to the pilot screening programme for cervical cancer. I ask the Minister to look seriously at the timeframe. Much work has been done by the steering group and there is much information available. The programme should be developed and implemented as quickly as possible. Will the Minister indicate where it has been introduced on a pilot basis and how he sees it developing?

It is important that these programmes are accompanied by a health promotion and information strategy. Resources should be made available to inform women that they are available to allay their fears and highlight the benefits of screening.

I am glad the Minister tackled the delays in issuing cancer screening test results. It is appalling that some women have had to wait up to 13 weeks. I am pleased that extra resources have been made available and that the turn-around time will be one month. This should be reduced to two to three weeks, if possible. It is extremely important that results are made available quickly as women become anxious when they present for a smear test. In other countries there have been major scandals when women who were given the wrong information developed cancer. There is a need, therefore, to maintain high standards in screening.

The speeches in the Seanad on this Bill were interesting. The point was made that when women present for screening the opportunity should be taken to conduct further tests to detect other illnesses. That would mean extra resources but it is a point well worth thinking about. The opportunity could be taken to help women to look after their health effectively.

I take the point made in relation to men's health and the cancers which affect them. We have been very good in recent times in high-lighting particular illnesses which affect women and have begun to get a response but in health research women have been neglected. I cite research into heart disease as an example, women are less likely to be treated than men for heart illnesses. There is a need for constant monitoring to ensure there is no bias. Less money is made available to research the health needs of women. We must be careful to address the needs of women and men.

Much more work needs to be done in the areas of education and prevention. It is clear that international companies in their advertising are targeting young women and getting the message across that it is smart to smoke. Unfortunately, they have been successful. This is worrying. It appears the health strategies have been more effective when it comes to young men. Young men involved in sport in particular have got the message that one should not smoke. Young women, on the other hand, are vulnerable, although the recent figures show a slight change in the numbers who smoke.

I welcome the introduction of these screening programmes which are extremely important and will make a huge difference to women's health. I hope they will be implemented speedily.

Dr. Moffatt

I am glad to have the opportunity to comment on the Bill. As everybody knows, cancer is a major killer, up to 7,500 people per annum. It reflects well on the health services that we are thinking about the introduction of screening programmes. In years gone by the biggest killer was TB. Anything that will help in the early detection of cancers is welcome. The cancers most amenable to screening are cancer of the breast and cervix. Early detection in many cases means better results. In others, the prognosis depends on the types of cancer cells present.

Prevention is better than cure. We should start perhaps with what can be done for those who have skin cancer, to which the Celtic race is especially prone. There is a need for an information programme to advise farmers, fishermen and those exposed to excessive sunlight on how to avoid developing this form of cancer.

Deputy Cowen mentioned testicular cancer which affects young men especially. It can be detected easily and is amenable to screening. On cancer of the lung, there has been much hype in the American press recently in regard to companies, even at this late stage, acknowledging that there is a definite link with smoking. We have been aware for many years of the link between smoking and cancer. Smoking has been a big killer of men and it is unfortunate that an increased number of women have started smoking in recent years. Lung cancer can be prevented to some extent and we should highlight the risks associated with smoking.

Great strides have been made in recent years in the treatment of cancer. I welcome the efforts by the Minister to set up a regionalised treatment programme as patients do not like to travel too far from home and prefer to be treated in their local hospitals. While surgery and chemotherapy are now available in most county hospitals, the question of the provision of radiotherapy in some hospitals has still not been decided. I recently read that radiotherapy services would not be available in the Western Health Board area for some years. This may be related to the building programme at the University College Hospital, Galway, but I hope this service will come on stream shortly.

The provision of palliative care is very important. If people cannot be cured then they should get the best care possible. Cancer patients worry about what will happen to them and how their families and relatives will cope. Palliative care not only helps to ameliorate pain but also helps families deal with psychological problems. The palliative care programme has progressed very satisfactorily in recent years. Palliative care should be provided at home by the general practitioner and the palliative care team. If this is not possible then it should be provided by district or county hospitals. In most cases palliative care can be provided on a domiciliary basis. We must ensure that this care is provided to patients in their areas.

We need to carry out further research in this area. We can also learn from other countries in terms of how to approach the problem. The provision of data on cancer is important in ascertaining whether there are any precipitating or aetiological factors. I wish the Minister every success with his cancer treatment programme.

Minister for Health (Mr. Noonan,

Limerick East): I thank the Deputies who contributed to the debate. It is interesting during a debate on a Bill with no political overhang or content to hear the views of Deputies and to take them into account when formulating policy.

Deputy Cowen in his very interesting contribution referred to the waiting lists at the Coombe Hospital. As Deputy Fitzgerald said, when I announced the cancer strategy and the publication of this Bill I also made a further announcement that £1.5 million would be allocated this year to recruit the necessary laboratory and trained medical and analyst staff to ensure that the backlogs were cleared. While some of this money will be allocated to the Coombe Hospital, it will be distributed evenly throughout the country to ensure, as the year progresses and the staff are taken on, that the longest any woman will have to wait for the result of a cervical screen test is four weeks. If one looks at the regional breakdown of the national cancer strategy one will see that elements of this are included in taking on extra staff.

Deputy Cowen also asked about the legal advice in respect of the National Cancer Registry Board. This arose from the decision by a hospital in the south to refuse to advance names and addresses to the National Cancer Registry Board.

The board must accumulate data on all types of cancers over a period of years before any conclusions in respect of incidents, clusters or treatment can be drawn. The hospital in question contacted the data commissioner, its legal adviser and the Department of Health. The data commissioner refused to give a definitive answer: he did not tell the hospital it was okay to do so but he did not stop it from doing so either. On the basis of the advice it received from its legal adviser, the hospital decided it would no longer comply with the requests of the National Cancer Registry Board. I took advice from the legal adviser in the Department of Health who was of the view that it would be better to use the opportunity and vehicle of this Bill to preserve the present position. I am not giving the National Cancer Registry Board new powers but rather am simply preserving the present position to ensure that this hospital which had a problem will now feel comfortable giving names and addresses and that this practice continues. This is a very closed medical community and what happens in one hospital today may happen in a hospital up the road or the next health board area within a very short period. That is the reason I sought the legal advice.

Deputy Keogh referred to the issue of confidentiality. Names and addresses are provided to the National Cancer Registry Board at present. There is no other way of ensuring that the data is accumulated and is accurate. That is the experience abroad and the experience of the National Cancer Registry Board up to now. Data on the consultant, hospital, diagnoses and treatment is passed on; in other words a person may go from St. John's Hospital to Limerick Regional Hospital, to St. Luke's Hospital and finally to the Mater Hospital. The only accurate way of ensuring the incidence and development of the cancer is tracked is by the provision of this data. The data made available to the National Cancer Registry Board is useful and does not merely involve gathering statistics. This data can be used for the benefit of others subsequently.

I am not giving any new powers to the National Cancer Registry Board; rather I am simply protecting the present position. It has been the practice of the National Cancer Registry Board to treat with the utmost confidence the names and addresses of persons whose cancer condition has been notified to it. It has no interest in publishing the names and addresses. Its only interest is to ensure that the incidence is tracked across the treatment so that there is no duplication and no information is included which would falsify the data.

The first report of the National Cancer Registry Board will be published shortly. If I recall correctly, when the board was founded in 1981 it covered the Cork-Kerry health board region and only became a national board in 1993. In terms of national data, therefore, we are only talking about a couple of years. One year's data would not be of much use because it could give an atypical result. It will be a period of time before the resource is really valuable. Once a number of years' data is accumulated, pictures will begin to emerge on which some conclusions can be based, although one would like to see it proceeding over a period of years before basing absolute conclusions on it.

As regards certain cancers in the north east, such as the one referred to by the Deputy, and linking that to Seallafield, it is premature to argue there is a higher incidence. The increase may have been for just one year. In a particular housing estate not far from where I live there has been a very high incidence of breast cancer on one road, but next year and the following year that may change completely. It is difficult, in the absence of the work of the National Cancer Registry Board continuing over a period of time and publishing its results, to draw conclusions in regard to clusters and the reason particular clusters occur.

In terms of prostate cancer and the amendment I have proposed, I thank Senator Finneran and I understand the point he was making. It is not just a question of ag sodar i ndiaidh an uasal, or chasing after the British, in terms of medical advice. The medical advice internationally is that it would be premature to invest in screening programmes for prostate cancer because the results do not justify it. A European Union study, which includes Ireland, is ongoing, and we may have data arising from that.

In terms of other cancers where screening might be an appropriate initiative, cancer of the colon may be first over the line in terms of medical opinion on the efficacy of a screening programme. The reason we moved away in the Seanad debate from including prostate cancer as an additional possible cancer, for which a future Minister for Health might arrange a screening strategy, to the wider "catch all" amendment in terms of cancers was because of the additional information given to me. It is not clear that if one were to proceed from breast cancer to cervical cancer that the next best option would be prostate cancer. It might be other cancers, particularly cancer of the colon. That is the reason the amendment is cast in a wider way to suggest that any cancer screening programme being introduced by a future Minister for Health will not run foul of data protection legislation. That is the essence of the amendment.

If a future Minister for Health decides to proceed in regard to prostate or some other form of cancer, this enables him or her to do so. That was the basis on which Senator Finneran accepted the strategy that I would come back to this House and propose an amendment. While we were tying it narrowly to prostate cancer, he was pressing the amendment. When the Seanad decided, on a consensus basis, that this wider approach was better, Senator Finneran withdrew his amendment and said he would be happy if we introduced it along the lines proposed here. We will go back to the Seanad tomorrow morning to report what we have done.

There is no need to specify prostate cancer separately because the jury is still out on the effectiveness of prostate screening as a strategy, but the amendment is enabling and it allows that kind of screening to be introduced subsequently if it is deemed to be effective.

In regard to the question raised by Deputy Cowen about Dr. Armstrong, I answered a parliamentary question recently pointing out that Dr. Armstrong clarified the situation to the Department. He did not mean to say that 2,000 persons were seeking radiotherapy who were not in receipt of that treatment. He said a large number of people might prefer radiotherapy as a strategy if the service was available. He did not suggest there was a waiting list of 2,000.

Clinical decisions are being made constantly as to whether a person with cancer is given the option of surgery, chemotherapy or radiotherapy. Chemotherapy interventions are currently on the increase and the conventional wisdom that radiotherapy should be the first intervention no longer applies. There is not a waiting list of 2,000 for radiotherapy, and Dr. Armstrong has confirmed he did not mean this number was not receiving services. He was pointing out that more people might benefit from radiotherapy than currently were being treated if extra facilities were put in place.

There is competition among oncologists, as there is among other people in our community. Some chemical oncologists argue that their interventions are superior to the interventions of others. We are increasing the facilities around the country on an interdisciplinary and even basis, and we want interdisciplinary teams under team leaders in all the health boards to ensure best practice prevails universally and that, if there are any shortcomings, they will be addressed.

I commented already on Deputy Keogh's remarks about privacy. The breast and cervical screening programmes will be organised in a sensitive manner. Both programmes will be optional, as will any further screening programmes for the other types of cancer should they be launched. It is essential that population registers are put in place to ensure a high percentage uptake of the target population. For example, in respect of breast screening, the cohort for women between the ages of 50 and 65 is 240,000, the first step of which is 120,000 or half the cohort.

Once the women are screened, anonymity prevails and a name and address will only be required for reference to the National Cancer Registry in Cork if they are diagnosed with cancer. The names and addresses are necessary to call the women in, but that does not mean records will be made available in respect of their medical condition. The issue will be treated sensitively and confidentiality will be respected.

In respect of cervical screening for young girls, a point also made by Deputy Keogh, the experts in the area recommend that, in respect of cervical screening, the target population should be from 25 to 60 years of age. They are the most appropriate cohort for cervical screening. The expert group which advised me was of the same conclusion. Cervical screening is not recommended medically for teenagers but it is recommended for young women from the age of 25, whereas breast screening is recommended for women from the age of 50. It is a different cohort of women.

On the timetable for cervical screening, a national programme is planned for not later than 1999, and earlier if resources permit. One of the main reasons for the deferred time scale is that we first need a pilot project to ensure best practice is developed and that what has bedevilled other screening programmes — high incidents of false positives and false negatives — are eliminated. Once best practice is developed, it can be transferred to wider screening programmes. The lessons learned would be harnessed for the national programme.

The Mid-Western Health Board area is to be used for the site of the pilot project on cervical screening. That is home territory for me, as Deputies are aware. The breast screening will be expanded in the Eastern Health Board, Midland Health Board and North Eastern Health Board areas in the first instance, and will be developed later in the west and the south. Those are the arrangements I have put in place.

The £6 million available for the cancer programme is sufficient for our needs this year, but an additional tranche of money will be required in 1997 and again in 1998. We estimate that a total annual budget of £22 million will be necessary to bring the services to where we want them to be in accordance with the national cancer strategy. Professor Jim Fennelly of St. Vincent's was quoted as saying that the budget will be a bit tight. He has accepted the position as chairman of the cancer forum and will be in a position to ensure that all the information crosses his desk. He will be able to advise us in the future of any inadequacy in the strategies we are pursuing or in the financing.

I thank Deputies for a very constructive debate. The Bill is quite short but it is extremely important. I do not want it to intrude on the wider data protection issues. I am aware that we should not approach issues such as this in a piecemeal fashion. However, we have consulted the Data Protection Commissioner and he is agreeable that we should move along these lines. Lesser causes always give way to greater causes, and the great cause here is the cause of public health in terms of cancers, particularly cancers that affect women and in respect of which we know the incidence of death among women would be reduced if we had screening in place. In circumstances such as that, I thank the Data Protection Commissioner for his co-operation in agreeing that we should move forward incremenabl tally in this fashion to enable screening programmes to commence and proceed.

Question put and agreed to.