Joint Committee on Health debate - Wednesday, 10 Apr 2024

Funding and Implementation of the National Cancer Strategy: Discussion

An Cathaoirleach

Apologies have been received from Senator Hoey. Copies of the minutes of the meetings of 27 and 28 February and 5 and 20 March 2024 have been circulated to members for consideration. Are the minutes agreed? Agreed.

The purpose of today's meeting is to consider the funding and implementation of the national cancer strategy. The meeting will be divided into two sessions. We will hear first from representatives of the Irish Cancer Society, ICS, following which we will engage with witnesses from the Health Service Executive, HSE. I am pleased to welcome Ms Averil Power, chief executive officer; Ms Emma Harte, policy and campaigns manager; and Mr. John Kennedy, MB FRCPI, consultant medical oncologist and co-director at Trinity St. James's Cancer Institute, ICS.

Witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. If witnesses' statements are potentially defamatory of an identifiable person or entity, they will be directed by me to discontinue their remarks. It is imperative that they comply with any such direction.

Members are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person outside the House or an official either by name or in such a way as to make him or her identifiable. I remind members of the constitutional requirement that they be physically present within the confines of the Leinster House complex in order to participate in public meetings. I will not permit a member to participate if he or she is not adhering to this constitutional requirement. Any member who attempts to participate from outside the precincts will be asked to leave the meeting. I will ask any member participating via MS Teams, prior to making a contribution, to confirm that he or she is located on the grounds of the Leinster House campus.

To commence our consideration of the funding and implementation of the national cancer strategy, I invite Ms Power to make her opening remarks.

Ms Averil Power

Every three minutes, someone in Ireland hears the words, "You have cancer". I know some of the people attending this meeting have heard those words personally and others have been given this news about someone they love. People here know all too well the impact of a cancer diagnosis, including the fear and uncertainty it brings, the physical, emotional and financial burden it imposes, the enormous grief when it takes the life of a loved one too soon, and the impact on those who are fortunate to survive but who struggle with lasting effects such as infertility, incontinence and fatigue.

With cancer rates expected to double by 2045, one in two of us will be diagnosed with the disease in our lifetime. When we are, we deserve the best possible chance, both of surviving and of having a good quality of life afterwards.

Sadly, people with cancer are not being given that opportunity in Ireland today due to Government failure to properly fund the 2017 national cancer strategy.

Cancer care used to be the poster child for progress in the Irish health service. In 1998, just 44% of Irish people were alive five years after a cancer diagnosis. By 2018, that had increased to 65% thanks to investment in the first two national cancer strategies and brave decisions like the centralisation of cancer surgeries. However, the proportion of people getting and dying from cancer in Ireland was still significantly higher than in other EU states and we had a long way to go to catch up on the best-performing countries.

The third national cancer strategy, chaired by Professor John Kennedy who is seated on my left, was designed to change that through improvements in cancer prevention, detection, treatment and survivorship support. It highlighted the importance of investment in cancer research and trials, as well as the need for workforce planning and sufficient support for the national cancer control programme. It was an ambitious but achievable plan which, if backed up with political leadership and investment, would transform the outcomes of people affected by cancer in Ireland. The Irish Cancer Society was proud to sit on the steering committee that developed the strategy and expected it to lead to further significant improvements in cancer outcomes here. However, inadequate Government funding and the impact of Covid-19 on cancer diagnosis and treatment means that we are now longer confident that will be the case. In fact, we are concerned that Ireland's cancer outcomes may have stagnated or even disimproved since the strategy was published. Without proper funding, the national cancer strategy is a plan without action, and a plan without action is not a plan; it is just words. Words are no comfort to someone languishing on a waiting list for a cancer test, getting more worried by the day, or to the healthcare professionals trying to do their best in a chaotic system, knowing their patients are not getting the standard of care they deserve.

The national cancer control programme has only been given proper funding for the current national cancer strategy in two of the seven budgets since it was published, namely, the budgets of 2021 and 2022. As a result, progress has been piecemeal and partial and proper multi-annual workforce planning has not been possible. Improvements have been made, particularly in nursing services and psychological support for patients, and innovations have been developed, such as the acute oncology nursing service. However, these need additional funding to realise their potential.

Almost seven years since the strategy was published, it is clear that the key cancer prevention target of reducing the adult daily smoking rate to 5% by 2025 will not be met. Bowel screening has not been expanded as planned. Target waiting times for cancer tests are consistently exceeded. Surgical delays continue to be common due to understaffing and lack of protected beds and theatre space for cancer services. Patients still struggle to access key supports such as dieticians and lymphedema treatment.

We are also falling far short of the already modest target of 6% of cancer patients participating in clinical trials. In some areas, things have significantly disimproved since 2017. Waiting times for radiotherapy have increased, with expensive equipment lying idle in several hospitals due to an ongoing shortage of radiation therapists. Inequality between public and private patients is growing, particularly in terms of access to new medicines. It is truly shocking that this is being allowed to happen, particularly when we have such strong evidence that investment in cancer services works. It saves lives and it saves the State money in the long term.

The Irish Cancer Society is urging members to work with us to change this. I urge members to help us to ensure that cancer is a political priority now and in the coming years, the Government publishes a credible plan to fully implement the national cancer strategy with ring-fenced multi-annual funding, urgently needed improvements in cancer services are delivered and every Irish person, regardless of his or her background or income, has the best possible chance of surviving cancer.

An Cathaoirleach

I thank Ms Power. On a point of information for members, there was a briefing note sent out yesterday from the Secretary General of the Department of Health, Mr. Robert Watt, and it might be helpful to both groups in the discussion this morning. I will open up to members straight away. Deputy Colm Burke is going to lead us off on the questions.

Deputy Colm Burke

There are two points to be made in that regard. Four out of ten cancers are preventable. A key part of the strategy was to get the numbers down. A target that will not be met is that for smoking.

Early diagnosis is crucial. The main determinant of cancer survival is the stage at which the cancer is diagnosed. It was particularly distressing in recent years to see the impact of Covid on diagnostics. There were two years in which thousands of cancers went undiagnosed as a result of Covid. We are concerned that there has not been a sufficient investment to clear the backlog as soon as possible and build more capacity so nobody will be waiting too long for a test. The target times for tests, even in the rapid access clinics, have been exceeded consistently since the strategy was published. This points to a particular area of inequality because, once you get a cancer diagnosis in Ireland, treatment is, for the most part, as good in the public service, if not better. There are issues concerning access to medicine, which I mentioned, but early diagnosis is crucial. The reality is that people who cannot afford to get tests privately must wait far longer for colonoscopies and other essential diagnostic tests than those who can afford to go to a private a hospital. That is an incredible inequality that continues to obtain. Diagnostics comprise a key aspect, and we have not seen as much progress as we would have hoped for in this area.

Professor M. John Kennedy

It is very true that people from deprived areas have worse and more cancers, including later-stage cancers, than people from other areas. Also, they do worse with therapy. This has to do with a host of factors, including medical literacy and access to diagnostics. There is no doubt but that the NCCP has worked quite substantially on public awareness, but more can always be done. It has been said that we are not going to treat our way out of this problem, which means we are going to have to reduce the incidence, or at least the acceleration of the incidence, of cancer as best we can. That is done in the public health arena. We need as much education and awareness raising, targeted at the right populations, as possible. We also need to ensure they have access to diagnostics and are diagnosed at an early stage.

Deputy Colm Burke

Are we doing enough on targeting?

Professor M. John Kennedy

I think so. It is well known in the NCCP that it needs to target those populations that are at increased risk. I believe it is doing that.

Again, that is the kind of thing that would benefit from multi-year funding planning, rather than doing stop-start work. It is a complex area and requires real innovation. It would benefit from a planned distribution of funds to make sure it happens over a number of years because it will not be done in one year.

Ms Averil Power

We run awareness campaigns all the time to make people aware of the signs and symptoms of cancer and to encourage them to seek help. We then face a challenge when we receive a call to our support line and a person tells us they have a worrying symptom, but they cannot afford to go to a GP. We have run research that states that two in five people have put off going to a GP with cancer symptoms because they could not afford to do so. People also call us to say their GP has referred them for a test, but they are still waiting, they do not know what is happening and they cannot afford to go into private healthcare.

Regarding investment, it is really important that NCCP, us in the Irish Cancer Society and others do everything possible to make people aware of cancer symptoms so they can get investigated, but we also need to make sure that once they take that step and reach out, they are seen within the appropriate timeframes, with no exceptions, regardless of whether they are in public or private healthcare.

Deputy David Cullinane

Ms Emma Harte

I thank the Deputy for the question. We get information in a variety of ways. As the last available report on the implementation of the national cancer strategy comes from 2022, already we are working 15 months in arrears at this point and we do not really know in detail what happened in 2023. There are some areas where we can get information on 2023, including the HSE service plan and the HSE performance reports, which at this point are only available up to September 2023. Data really is a problem that needs to be addressed to make decisions and to make a plan for the next year or so.

The Deputy had a question about screening targets. I believe that BreastCheck was the only screening programme that met its target in 2022. The other programmes are not meeting the required targets. There is a particular point about BowelScreen that needs to be raised as well. When the national cancer strategy was initiated, the plan was always to raise the uptake target to 60% by 2020. That has not happened yet. The target uptake rate is I believe still at 45%. I am sorry, I will correct myself there: it is actually meeting that target but is not at the required target-----

Deputy David Cullinane

I would like to come back to the radiation therapy issue.

This jumped out from the opening statement. Ms Power stated that while wait times for radiation therapy have increased, expensive equipment is lying idle in hospitals due to an ongoing shortage of radiation therapists. It really drives people mad when we have equipment but do not have the staff to operate it. Why, in the witnesses' view, is there a shortage of staff? Is it because we have not recruited enough people? Are we not training enough people? Is there a shortage in this area? Is it back to workforce planning? What is the cause? Is the current recruitment freeze also hindering recruitment in these areas? I will leave it at that and let the witnesses respond.

Professor M. John Kennedy

We need more radiation therapists and ultrasonographers to be trained.

Deputy David Cullinane

I know we need more but in saying we cannot get them, why are they not there?

Professor M. John Kennedy

There are individual answers to that, I presume, but we need to recruit from abroad and it can be difficult. The basic answer is we are not training enough of them because we have not reacted to the increased requirement over the past several years. That is true in many areas of infrastructure in the health system. It is the predominant reason.

Deputy David Cullinane

I thank Professor Kennedy.

Deputy Róisín Shortall

Sure, and the committee has a responsibility to pursue that line with the new Taoiseach. We will probably decide to do so.

I want to ask about the question of the shortage of radiation therapists. The witnesses listed a number of things that need to be done. What is the situation with the number of training places at the moment? Short-term measures can be taken, such as people coming from abroad, but we need to produce adequate numbers ourselves. Do we know what the numbers are? Have they increased over the years? Where exactly is the problem? Is it that there are not sufficient places? Will the witnesses speak a bit about that?

Ms Emma Harte

Is it possible to disaggregate those factors and look at the social and commercial determinants in the context of cancer rates? We had a session here a couple of months ago on the commercial determinants. It is an uneven contest between health messages and the commercial advertising of alcohol, vaping, fast food, highly processed foods and all that, given the multi-billion euro advertising budgets. Is the ICS proposing anything specific on that area, where the Government could step in and, through legislation, limit access to those factors that impact the rates of cancer?

Ms Averil Power

As I said, cancer prevention is a massive priority for us. It was called out as one of the key recommendations in the national cancer strategy because four out of ten cancers are preventable through lifestyle changes like a proper diet, reduced alcohol intake, not smoking and all those factors. There have been some positive improvements. For example, the alcohol restrictions, such as alcohol labelling, which we supported, that have been introduced in recent years have been positive.

We are very frustrated by the lack of progress on tackling youth vaping and the massive damage that is doing. I know the committee has looked at the matter in terms of the undermining of decades of incredibly positive work in Ireland to tackle youth smoking and that a vaping epidemic has been allowed to happen. I know that positive steps have been taken by the Minister in terms of supply restrictions through age restrictions and things like that. Deputy Shortall has hit on the point that unless the relentless market targeting of vaping products at children, and of unhealthy foods at everybody, is tackled, we will not really get to the core of the issue.

As Professor Kennedy said, part of health outcomes in disadvantaged areas is down to inequalities in terms of access to healthy food and part of it is health behaviours. We have to find a targeted and effective way of dealing with that. It is crazy when one compares the marketing might of those industries, as the Deputy has done in terms of looking at the commercial determinants, with the work the State is trying to do in public health. Public health messaging is important but we would also say that people know that smoking is bad for them. It does no good for the State and the ICS to tell people smoking is bad for them if they are not being given proper support to help them to quit. The ICS saying people need to eat better is no use if people cannot afford to eat better. It is no use telling kids they need to eat better while at the same time they are being bombarded with advertising point-of-sale marketing for unhealthy foods. We have to look at this issue in the round.

An Cathaoirleach

It is a matter of deep frustration for the committee because we set aside a lot of our work to discuss vaping. We were told that legislation on vaping was going to be a priority. We, as a committee, prioritised the legislation and rushed it through but now it is sitting on someone's desk. Hopefully, the Minister or someone in his office might be listening and will take the initiative to fast-track the Bill.

I will move to the issue of clinical trials. As it is not an issue we have talked about much during this session, I will give our guests some time. I noted that the Department's briefing note for the meeting cited some of the genetic issues as a success story. Our guests, however, are saying that we have very low rates of participation in clinical trials, if I am reading the situation correctly. I am also watching, at an EU level, the issue around rare diseases and orphan drugs going through. I am concerned that the law might not be working in the way we want it to and genetic therapies, in particular, might not qualify for the extension for pharmaceutical companies. Perhaps our guests could take the time available to outline where the shortfalls lie in getting people onto clinical trials.

Are we doing enough in terms of dealing with stakeholders, particularly in the area of genetics? What actions is Ireland taking in the EU, particularly on the rare diseases issue? Are we pushing hard enough? We have a huge pharma industry here and I presume those companies really want this to work well.

Ms Averil Power

There are a number of issues. At a high level, the target set in the national cancer strategy for clinical trials is 6% which is incredibly modest compared with better performing cancer services that are research active in other EU states. The most recent figure we have is that it is at about 2%. With a strategy that is due to expire in 2026, even getting to 6% looks unlikely at this point despite the efforts by individual institutions. Not having a proper investment in research infrastructure and hospitals matters because we know that patients do better in research-active environments. We know the trials also provide access to new medicines in a much cheaper way for the State and that potential is not being met. There is also a broader issue in terms of access to new medicines and how far behind Ireland is in European terms.

Professor Kennedy might wish to talk about some of the challenges on the ground.

Professor M. John Kennedy

Patients who get clinical trials do well. They provide patients with an opportunity to receive advanced scientifically driven therapies before they are available, which might be critical for some people. The real hallmark of excellent cancer services is having plenty of clinical trials available for patients. We have enormous problems in this country with doing that. I will go through them from the beginning. We have a regulatory environment that is oppressive. We live in a small island in the north Atlantic off another small island and we are not at the races in terms of getting patients at clinical trials for a variety of reasons. The regulatory environment is hostile. It takes huge effort to get clinical trials up and running. If we cannot get them up and running in time, they close. If they are closed without having recruited to them, the people who sponsor those trials do not come back. That is the first problem we have.

The regulatory environment is under-resourced and under-professionalised, particularly in HSE-run hospitals. The data protection process is labyrinthine and contradictory. If multiple institutions are trying to collaborate on a clinical trial, multiple DPOs are giving multiple opinions requiring multiple amendments to studies. I could go on at length about this.

The clinicians trained in cancer in this country are trained in the finest institutions in the world where they have participated in, directed, written and published clinical trials of major importance. They cannot continue that work in this country to any significant extent, and to the extent that they want and that their patients deserve, because the environment is not suitable for doing that and they do not have the time to do it. One of the recommendations in the cancer strategy was that newly appointed clinicians in the cancer arena would have protected time to allow them to focus on doing this kind of work which requires a huge amount of effort; that has not happened.

We cannot recruit clinical trials staff because most of them are on temporary contracts and nobody wants a temporary contract nowadays; we cannot recruit people onto temporary contracts.

It is a matter of infrastructure and there are other outside issues as well. For instance, clinical trials nowadays are highly specialised to small numbers of patients with specific molecular abnormalities in their tumours. In the old days, when we did not know what the molecular abnormalities were we would have a mixum-gatherum where multiple patients would be eligible for trial. Now they are much smaller numbers.

There is huge work involved, inadequate resourcing and a regulatory environment that is basically hostile, leading to difficulty in inviting trials into the country and getting them up and running in a timely fashion. In a competitive commercial environment looking at new drugs, it is all about how fast we can produce the information that tells us this is a good drug or a bad drug and whether we can proceed with it.

Can I comment on that? Is that okay with Ms Power?

Ms Averil Power

Yes.

Professor M. John Kennedy

Covid-19 had a massive disruption on cancer service delivery in the country and elsewhere as well. It taught us that we need to be able to provide cancer services when the next epidemic arrives – because it will arrive – without disruption to services. That requires infrastructure that enables us to do that. It requires us to be able to bring patients into the hospital, give them their treatment, get them their scans and see their doctors without running the risk of picking up Covid-19 because they are being mixed with the general population. That was a key message. It has been estimated in the United States that due to delays in diagnosis due to the Covid-19 epidemic that there will be 6,000 extra deaths from colon cancer alone in the next ten years. That is an estimate and it gives us sort of a feel for the impact it will have. Of course, with many cancers, delays in surgery are critically important in long-term cure rates and I think Covid-19 will probably demonstrate that. I imagine huge amounts of work will be done over the next few years by epidemiologists analysing that. It showed us we need better infrastructure so we can cope with the next epidemic, which we do not have at the moment and need to develop. One of the recommendations in the cancer strategy is that we have a rolling plan for improvement in cancer service delivery in terms of physical infrastructure, which is day treatment, radiation therapy, inpatient units and so on.

Would that be the same for heart disease and for all other illnesses? Obviously the 1990s were different in terms of education, more people smoked such as people who started smoking in the 1950s and 1960s who did not know the consequences of it.

With younger people today, there may be more pressures, bombardment or whatever else, but most young people know there are dangers with smoking, excessive alcohol consumption and living an unhealthy lifestyle. There may be issues in changing that and their addictions, but most people know inherently what is good and bad for them that perhaps people who started smoking back in the 1950s and 1960s did not know. Is the level of increase going to be less anyway? That is not to say we should not invest. Absolutely invest, but will the outcomes be slower as we go?

Ms Averil Power

As Professor Kennedy said, they are probably harder won than when we had massive, basic problems in our health service. We were able to make those leaps faster. There is enormous potential in cancer because of the scale of the pace of medical and scientific progress and the improvements from things like the HPV vaccine. We now have a whole form of cancer, that is, cervical cancer, which is preventable. Hopefully it will be eradicated in the coming years. There is more potential to be able to prevent more cancers in the future and to have far better, more personalised and effective treatment. We are seeing that all the time with personalised medicines, improvement in targeted therapies, immunotherapies and gene therapies. The potential from new treatments is incredible but the challenge is that they are not getting to Irish patients. The ones that are available right now are not getting to Irish patients. We have the second slowest access to new medicines in Europe. We are way behind in this regard, let alone having the confidence that the newer ones coming down the road will give to Irish people.

The Senator mentioned that thousands of lives have been saved as a result of the first two national cancer strategies. That is amazing and it shows investment in cancer works. Our frustration is that many more would be saved if our outcomes were up there with places like Finland and Spain, which are leading on the cancer front. Germany has the fastest access to new cancer drugs. If Ireland was performing at the optimum and had properly resourced services, multi-annual funding and properly staffed services, there would be countless Irish people who would still be with us today and many more into the future.

As I mentioned at the start, one in two of us will get cancer in our lifetimes and we deserve to know that when that happens, we will get the best possible chance of surviving it. The reality is that, right now, we are not, whether that is due to lack of investment or otherwise. That is why we want to underscore that message that if we were up there with leading countries, more Irish people would be surviving and thriving after cancer. That is still possible. I am conscious that when we have these hearings, we dwell on the negative. It is our job to come in, as a national cancer charity, to highlight where we are behind, but there is also enormous hope and potential within cancer. It is just a case of making sure that the resources are there for us to realise that potential and to save more lives.

Deputy Gino Kenny

Good morning. I thank the witness for her statement this morning. My first question surrounds someone who has been given a diagnosis of cancer. As for counselling and back-up, and the trauma someone has after hearing that diagnosis, is there any kind of model or intervention out there for someone to get counselling with his or her diagnosis? I had a very recent experience with a close friend of mine. There was a shortage of intervention in terms of the diagnosis they had been given and the counselling services to actually quantify what my friend had just been told.

Ms Averil Power

As the Deputy hit on it, hearing the words "You have got cancer" is still some of the worst news you can possibly get, either as an adult or as a parent in relation to your child. The Irish Cancer Society is often the first point of call for people when they have had that diagnosis and are struggling to come to terms with it. They call our support line. We have a free support line. It is 1800200700. People can call and talk to a counsellor or a specialist nurse. He or she will help people process and understand the particular cancer they have been diagnosed with, the treatment they have been told they need, what that might look like and the side effects they may have to face. He or she will help them with things like how to talk to their children about their cancer diagnosis and all of that.

I urge the Deputy, if we can ever help with that, to please let people know that that is available. We also fund counselling in over 20 cancer support centres around the country. Those are local cancer support centres, and we fund counselling in order that people can access that locally. We also have an online remote counselling service, which we developed during Covid. That is an absolutely crucial service. We have found in recent years that people have been more distressed, particularly as a result of late diagnosis and some of the financial pressures we have mentioned here before. The financial impact of cancer is huge. Also, as regards the national cancer strategy, psycho-oncology is one area where we have seen a lot of very positive developments. The NCCP has a national lead for psycho-oncology and has put resources in through the cancer support centres to improve that service. I am not saying there is not more that could be done, but-----

Deputy Gino Kenny

Yes, but that is good to know.

That is good to know. I am happy enough with that and to give somebody else a chance.

I will return to the issue of the availability of drugs in a second. It has been dealt with but it is important.

Ms Averil Power

On the financial impact, investment in cancer care saves money. Cancer that is diagnosed early is much cheaper to treat. The single biggest thing that would save lives would be the earlier diagnosis of all cancers. That is a particular challenge, and it is a greater challenge with some cancers than others. There are significant differentials. While our overall survival rate is now 65%, according to the latest figures available, it is 90% for both breast and prostate cancers, thankfully. There is a much lower survival rate for cancers such as those affecting the lung, brain and pancreas. Recommendations have been made in this regard. For example, lung screening has now been recommended by the EU. Investing in this in Ireland would help to pick up lung cancer, our deadliest cancer and the one that kills the most people here. If we invested in this area and in picking up lung cancers earlier, it could have a massive impact on improving survival outcomes for one of our cancers with a poorer prognosis. It is a question of investing in diagnostics overall and also of focusing on cancers with particularly poor outcomes, including those that tend to be picked up in EDs, for example.

A quarter of gastrointestinal cancers are diagnosed in emergency departments, which is shocking. Part of that is because people are not aware of the symptoms until they are in pain or they think it is IBS or other stomach discomfort and cancer is not something that comes to mind. Some cancers are still harder to pick up early but the more we can invest in early diagnosis and access to testing and screening as early as possible, the better.

Deputy Bernard J. Durkan

On the availability of appropriate drugs and new drugs to fight particular cancers as they are diagnosed, Professor Kennedy made reference to a ten-year waiting time for actual results. When the action is put in place, it may take ten years to become obvious. What action might be taken on the availability of the drugs, given that we live in the Single Market? We are entitled to the same level of supply of drugs as they are in France, Germany and so on. That was one reason the Single Market was brought about originally. It does not seem to work so much now. Perhaps variations are made to ensure some countries get a better service in that area than we do. Is that the case?

Ms Averil Power

Right now, each country negotiates for itself with the pharmaceutical industry regarding pricing. We have highlighted slow access to drugs for Irish patients and that we have the second-slowest access to new cancer medicines in Europe, which means patients are being denied access to life-saving and life-changing drugs. Part of the solution and something we have advocated for is a European solution to that issue. If the EU as a whole negotiated with pharmaceutical companies on fair prices for European citizens, that would have the potential to dramatically improve the picture in Ireland. It is incredibly distressing for someone to be diagnosed with a life-limiting cancer and know that if they lived in another European country or up the road in Northern Ireland, they would get access to a drug with the potential to save or prolong their life but, because they live in the Republic of Ireland, they do not have access to it. It is a complicated issue and the Government does not have an endless budget. We are very aware of the opportunity cost, particularly of expensive new medicines, but we have to find a solution. Part of that solution is European bargaining power and the EU working on behalf of all EU citizens to make sure we all get fair access.

Deputy Bernard J. Durkan

I agree with Ms Power entirely. I will finish on that. There are a couple of issues arising on which I may submit parliamentary questions, which may be of some assistance.

Senator Martin Conway

Ms Power and her team do enormous work in advocacy. The Irish Cancer Society is an important stakeholder. There is no doubt it has saved thousands of lives and given people quality of life. On the availability of updated data, we have had discussions in this committee over the years about computer systems. As regards access to data, for example, people who turn up at an emergency department in an area they are not familiar with would present a card to be scanned by the hospital to show which drugs they should or should not take. What is the situation in terms of the availability of updated data for cancer? How does it affect outcomes if data may not be as readily available as it should be? Perhaps Ms Harte would like to answer.

Ms Emma Harte

It is important that people have a personal electronic health record that will, as the Senator mentioned, help track their progress throughout the healthcare system, understand what their specific needs may be in that space and time and help a healthcare professional who is not familiar with their case to know what course of action to take or what questions to ask. It is important.

At a broader level, it would be very effective for healthcare planning and system planning to understand the wider, general needs of the population. We advocate for the roll-out of such a system. We think it is important and that it would be effective for cancer patients in the long term.

Senator Martin Conway

From her engagement with advocacy groups in other countries where this data is readily available, is there anywhere Ms Power would point to as having best practice?

Ms Averil Power

A representative from the Estonian agency visited last year and gave a presentation in the Royal College of Physicians on the work that agency has done. It is decades and miles ahead of us with respect to the data, clinicians being able to plan properly and have people's full record when they present themselves and patient access, which is really impressive. Patients are able to log onto a portal and see their health records. From a data privacy point of view, they can also see who has accessed their records, so people can be reassured that they do not have to have any concerns about data privacy for sensitive health information. Estonia is miles ahead of us. Some of the hospitals, including St. James's Hospital, have done a lot of work on the electronic patient record and it is having a positive impact.

Professor M. John Kennedy

Absolutely, we have electronic patient records so I can access a patient's record instantaneously from anywhere in the hospital. I do not have to wait for someone to find a chart and get it three days later. We have an excellent national system called NIMIS, national integrated medical imaging system, so I can access a catscan of a patient that was done in Galway if that patient comes to see me, which is tremendous. We need the same thing for clinical records. The only problem is when I go to look for the patient's records in Galway, for example if it is Mary Murphy, there might be 24 Mary Murphys and I have to find out which one it is because we do not have a unique patient identifier number, where patients would have one number that enables us to track their records. We need unique patient identifiers and electronic patient records as an absolute basic.

Senator Martin Conway

There is a huge amount of work to be done in this area. I am conscious of time and I think someone else has to get in so I am finished.

An Cathaoirleach

I was conscious of some of the information received, included that there are 23,000 diagnoses of invasive cancer on a yearly basis. It was also said that 61 new drugs were introduced in recent years. I was impressed that there were 61, but the witnesses said we are the second slowest in Europe, which is worrying. It is a positive message for anyone in the service, that new drugs are coming all the time and that those who have a particular type of cancer and might have received a death sentence a few years ago, have real hope. The frustrating thing is the fact that drugs are probably available in other jurisdictions that would save the lives of people who are currently in our system. That is the wake-up call for us all. It is something we can possibly take up with the HSE.

One area we have not really focused on - and the expansion of screening was mentioned - is a worry that came up previously with regard to the scandal over cervical cancer and the samples being sent abroad. We have not touched on it this morning. That is still happening and it was made worse during the Covid-19 pandemic. Many of those samples were being sent abroad and I think they have a limited shelf-life. Is it still the pattern that the majority of the samples are being sent abroad for various types of screening? How much of it is happening in Ireland? There was worry that we did not have the infrastructure in place. Perhaps the witnesses could spend a minute or so talking about that.

I was talking to someone about bowel cancer recently, who possibly needed to get an endoscopy or colonoscopy. The person got the test and was told that it would be six to eight weeks for the results. That seems like a huge amount of time.

Deputy Gino Kenny was talking about the impact of being told. The impact of not being told is equally difficult for people. There are a couple of issues that have not been touched on. What are the witnesses' views on those? It would be interesting for the next group that comes in to have that information.

On the screening, what area do the witnesses think is the easiest to address? Is it bowel cancer or in other areas? Men would say that the amount of screening for men in the services is quite limited. Would the witnesses look to expand services for prostate cancer or some other areas? There are a number of questions there for whoever wants to take them.

Ms Averil Power

Regarding screening and the cervical samples, I understand that the director of the screening service will be in with the next group. I know there has been investment into the facility in the Coombe but it will take time for that to be able to process all the Irish samples. Maybe the director can give an update on that.

Regarding screening programmes in general, the key thing is that we need to see that the existing programmes are meeting the targets that were set out in the strategy, including the higher target for bowel screening, and that we are seeing equal take-up across all communities, because there are big socioeconomic divides within screening. As Professor Kennedy said, that has been identified in the strategy. I know effort has been put into the screening service to try to reach some people but there are still big differences in breast screening uptake between south and north Dublin and between different communities. Screening saves lives and should save lives equally regardless of where people live or how much money they have. That is not happening yet and I think that needs a renewed focus.

The other question the Cathaoirleach asked was-----

An Cathaoirleach

Just on the screening-----

Ms Averil Power

Regarding new programmes, we need to increase the uptake of existing ones and then look at things like lung cancer, which has a European recommendation now, and at prostate screening, which there is good evidence behind. Many people pay privately for a prostate-specific antigen, PSA, test, but it is not equally available to everybody. Professor Kennedy might have something to add.

Professor M. John Kennedy

The Cathaoirleach asked which screening programme might be the one that is focused on first. I think that should be colon cancer. It is a common disease. We are increasingly seeing it in younger people, so it makes sense to lower the screening age. A quarter of all people who are diagnosed with colon cancer have advanced, incurable disease at diagnosis. We do not want to see that, so that is all about screening earlier. I would recommend that. The screening service will be in to talk to the committee and members can have a much more detailed conversation. The service will have clearly, scientifically defined goals and it will be interesting to hear that.

An Cathaoirleach

Is expanding screening purely down to money?

Ms Averil Power

It is money and needing to make sure that there is downstream capacity, so if one is going to identify people through screening, they can then get access to services that they need after that in a timely fashion. That is a big issue. The other area we would like to flag would be genetic services. I know it is mentioned in the HSE statement about the national hereditary cancer strategy. That is positive. It is important that there is a national lead for genetics. What we have not seen yet is sufficient investment and posts to tackle the massive waiting lists for genetic tests, counselling and preventative surgery. It is incredibly distressing to be told that you have a massive lifetime risk of breast cancer as a result of the BRCA gene or ovarian cancer but that the service cannot give you the preventative surgery to be able to reduce that. It is at all stages. It is about investing in screening to pick up early stage cancers and, in the case of CervicalCheck, pre-cancers, and then also making sure that there is follow-through and that people are getting timely access to the treatment that they need after that.

If there is one point that we really want to drive home, it is that strategies and policy are important. As far as we are concerned, the national cancer strategy is an excellent document. If it was delivered, it would make a significant difference and save thousands of lives in the year to come, but strategy is nothing without investment. Many of the positive actions that have been put in place in recent years are around things like policies, frameworks, and national lead positions.

There is now a research group which is brilliant, bringing together some of the best research minds in the country to look at what needs to happen, but as of yet there is not sufficient budget behind all those initiatives to make sure that those leaders can deliver and provide better outcomes for patients. What is needed is the budget.

An Cathaoirleach

Deputy Cathal Crowe has joined us. Although we have run out of time, I will allow a quick question.

Deputy Cathal Crowe

I apologise; I was at another meeting. The other evening, I met some cancer survivors who again raised the issue of the incessant battle they face getting medical cards. Does it remain a priority for the Irish Cancer Society? As TDs, we often need to write pretty miserable letters for people who have to repeatedly prove that their situation is woeful and that their outcome may not be great. What is the view of the Irish Cancer Society on that? Has it made a case to the Department of Health on it?

Ms Emma Harte

Every year this remains a cornerstone of our policy in our pre-budget submission. We make a conscious effort to raise it at every opportunity we get. I thank the Deputy for asking the question. We think that an automatic entitlement to a medical card should occur upon diagnosis of cancer for any person. This will help in some way to alleviate the numerous expenses that people face once they have a cancer diagnosis, such as accessing a GP and by way of reduced prescription charges. Having that medical card opens up access to other kinds of services and facilities they might need as a result of their diagnosis.

Ms Averil Power

The frustrating thing that we have seen from helping individuals is that many people will qualify in the end but only after they have gone through a massive maze and avalanche of paperwork. People with cancer do not have the energy or the time to be going through that. That is why we would recommend that it should be automatic from the start. It is one less thing for someone who has been diagnosed with cancer to have to worry about.

An Cathaoirleach

I appreciate the witnesses' having come in this morning. We have had a very useful session and it has set us up for the next meeting. There was considerable interest in the radiotherapists. If we get a specific note on that, we can follow through. Some committee members were already talking about putting in parliamentary questions. We will get an opportunity in the future.

Ms Averil Power

We can follow up with more detail on clinical trials if that is helpful.

An Cathaoirleach

The witnesses did not get the opportunity to respond on the screening that is happening abroad. The issue arose during the cervical cancer thing, but I think it is still a big concern for people. Screening needs to be timely and accurate, and people need to have trust in it. Anybody listening in who is worried should know that there are services there. They should contact their GP. If they are offered the opportunity to get a screening they should go for the screening and not put it off. The earlier these things are caught, the better the life chances are and the less impact it will have on the patient and their family.

Sitting suspended at 11.13 a.m. and resumed at 11.20 a.m.

An Cathaoirleach

We now resume our consideration of the funding and implementation of the national cancer strategy. I am pleased to welcome from the HSE, Dr. Colm Henry, chief clinical officer; Professor Risteárd Ó Laoide, national director of the national cancer control programme; Ms Fiona Murphy, chief executive of the national screening services; and Dr. Triona McCarthy, consultant in public health medicine of the national cancer control programme.

Witnesses are reminded of the long-standing parliamentary practice that they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable, or otherwise engage in speech that might be regarded as damaging to the good name of the person or entity. If witnesses' statements are potentially defamatory in relation to an identifiable person or entity, they will be directed to discontinue their remarks. It is imperative that they comply with any such direction.

Members are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against a person outside the Houses or an official either by name or in such a way as to make him or her identifiable.

I now invite Dr. Henry to make his opening remarks on behalf of the HSE.

Dr. Colm Henry

We are grateful for the invitation to appear before the Joint Committee on Health to consider the funding and implementation of the national cancer strategy. I am joined by my colleagues, Professor Risteárd Ó Laoide, national director of the national cancer control programme, Ms Fiona Murphy, chief executive of the national screening services, and Dr. Triona McCarthy, consultant in public health medicine of the national cancer control programme.

The prevention, diagnosis and treatment of cancer present a major challenge for our society. One in two people in Ireland will develop cancer at some point in their lifetime. In Ireland, approximately 24,500 people are diagnosed with invasive cancer each year, excluding non-melanoma skin cancer. The National Cancer Registry Ireland predicts that the incidence of cancer may double between the years 2015 and 2045, arising from demographic change and our growing and ageing population.

Cancer is the leading cause of death in Ireland, accounting for approximately 29% of all deaths in 2022. Cancer survival is improving in Ireland and the number of people living with and after a cancer diagnosis is increasing. At the end of 2021, there were 215,000 people living with or after a diagnosis of invasive cancer.

The National Cancer Strategy 2017-2026 sets out current Government policy for the development of cancer services in Ireland. At the time of publication in 2017, the cost of implementation in full was estimated at an additional €140 million revenue funding by 2026. The estimated increase by 2024 was €125 million, with cancer control accounting for €110 million and cancer screening €15 million. The national cancer control programme received a budget increase of nearly €70 million by 2024. Despite challenges, including the impact of the Covid-19 pandemic in 2020 and 2021, a lot of progress has been made on implementing the national cancer strategy since 2017.

The World Health Organization estimates that between 30% and 50% of cancer cases could be prevented through changes to modifiable lifestyle and environmental factors. Focusing on cancer prevention, the most cost-effective long-term approach to cancer control, a cancer prevention network, has been established with partner charities. Priorities include health inequalities, at-risk groups and skin cancer prevention.

The National Screening Service delivers four national population-based screening programmes, namely, bowel, breast and cervical cancer, and retinopathy for people with diabetes. These programmes aim to reduce morbidity and mortality in the population through prevention and-or early recognition of disease. In Ireland, approximately 5% of all cancers are detected through screening, representing a small but significant contribution to cancer detection.

Population-based screening programmes have a key role in reducing morbidity and mortality related to cancer. The cancer strategy includes recommendations to extend breast screening from age of 65 up to 69, which was delivered in 2020; change to HPV primary screening in cervical screening, which was achieved in 2020, and preliminary evidence shows is a key factor in our drive towards cervical cancer elimination; and increase the age range for bowel screening to between 55 and 74, which began in 2023 following Covid delays and is planned for further expansion as funding becomes available.

The 2022 National Cancer Registry Ireland report on national trends for cancers with population-based screening showed positive trends in incidence, stage, survival and-or mortality consistent with improvements in early detection and patient outcomes, with clear evidence for the additional benefits of screening. Detection, survival and death rates are all improving for people who have participated in screening.

Increasing the uptake of screening is a priority in the National Screening Service strategic plan. Uptake is crucial to ensure screening is effective and that all eligible people can access our services. Research is ongoing to provide an understanding of uptake rates for screening. Strategies have been developed under the newly published equity framework to encourage and enable more people to choose screening.

Early diagnosis can significantly mitigate the impact of a cancer diagnosis. A sustained focus on achieving timely diagnosis for people with symptoms of suspected cancer is essential through the ongoing implementation of the NCCP Early Diagnosis of Symptomatic Cancer Plan 2022-25.

Implementation has commenced on the NCCP's 2023 hereditary cancer model of care to improve services required for those with an inherited predisposition to cancer to reduce their morbidity and mortality from cancer. The overarching model of care for cancer is to provide multidisciplinary treatment planning and primary surgery in designated cancer centres with further treatments and supports as close to the patient's home as possible.

Investment has been made in the resourcing of rapid access clinics to support timely diagnosis, tumour conferences and multidisciplinary teams to ensure co-ordinated cancer treatment planning. New patient pathways are being introduced, including a mammography-only pathway for symptomatic breast disease, a dedicated pathway for people with a family risk of breast cancer and pathways for self-managed follow-up for prostate cancer whereby patients have a more personalised approach to managing their follow-up care.

The centralisation of cancer surgery has continued. New radiation oncology centres have opened in Galway and Cork, providing state-of-the-art facilities for patients. Development of radiation oncology services has continued in other locations and stereotactic ablative radiotherapy introduced. In systemic anti-cancer therapy, repatriation of chimeric antigen receptor cell therapy, CAR-T, and peptide receptor radionuclide therapy, PRRT, has been achieved and new drug treatments have been made available. The acute oncology nursing service has been implemented nationally, supporting people undergoing systemic treatment to avoid emergency department attendance, where appropriate. There has also been a greater focus on rare cancers, including sarcoma, neuroendocrine tumours and childhood cancer.

The strategy emphasised supporting the quality of life of people living with and after cancer and their families. The appointment of a clinical lead for psycho-oncology to improve services enabled the implementation of the psycho-oncology model of care in the cancer centres.

The establishment of the alliance of community cancer support centres and services led to a collaborative framework for community-based cancer support. Funding has been provided to support these centres in 2024. Targeted programmes to support people living with and after cancer include: life and cancer – enhancing survivorship; the cancer thriving and surviving programme; and children’s lives include moments of bravery, CLIMB.

We have produced numerous national clinical guidelines, pathways and treatment protocols to support front-line care. The national cancer information system is a patient-centred, longitudinal and accessible care record that is now live in 18 of 26 hospitals nationally. Work has commenced on the first cancer patient experience survey with HIQA. The national cancer research group is in place, with a national clinical lead for cancer research appointed to drive the cancer research agenda in line with the strategy. These developments illustrate how targeted funding for the implementation of the strategy results in real impacts for patient care. Key challenges remain, and among those is the need to address infrastructure requirements and to optimise the configuration of this infrastructure. This includes theatres, radiation oncology facilities, aseptic compounding units, cancer treatment day wards, inpatient wards and outpatient facilities.

Given the importance of early diagnosis and treatment planning for cancer outcomes, expanding access to diagnostics is key and the HSE is currently examining how best to improve on this. The ability to recruit and retain the specialist multidisciplinary workforce needed to deliver on the cancer strategy is essential.

International research published in The Lancet Oncology in 2022 found that jurisdictions which implement cancer control policies that are consistent over time were more successful in improving survival for a wide range of cancers.

The HSE has a dedicated workforce providing care directly to patients and service users, others who plan and oversee these services and many others in supportive roles. The successful implementation of cancer strategy is indicative of the commitment of the teams who provide cancer services throughout Ireland. I would like to conclude by thanking staff for their dedication, often in the face of significant challenges, to prevent cancer, provide cancer screening and deliver the best care they can to people living with and after cancer.

An Cathaoirleach

I thank Dr. Henry. The big issue that jumped out to me was that at the end of 2021, 215,000 people were living with or after a diagnosis of an invasive cancer. That is the positive news in Dr. Henry's opening statement. Our guests probably heard some of the contributions made earlier to the committee and those contributions will probably feed into the discussion we will have.

We are a little stuck for time so I ask committee members to stick to the seven-minute time limit.

Senator Seán Kyne

I welcome the witnesses. I acknowledge the new radiation oncology centre that opened in University Hospital Galway, UHG, in October. It will assist by improving the survival rates for cancer patients in the west, which are below average. What plans are there to bring the survival rates in the west up to the average, as it continues to rise?

Professor Risteárd Ó Laoide

Deputy David Cullinane

Deputy Róisín Shortall

That would be helpful.

Deputy Róisín Shortall

During the Covid pandemic, we all became very aware of the European Centre for Disease Prevention and Control, ECDC. It was the mother ship in terms of research and bringing us to a point where vaccination could be rolled out across the EU. The HSE is a funding partner of the ECDC. We are here to discuss a national strategy for cancer prevention. There will shortly be an EU-wide conference in Dublin on cancer control and prevention. During the pandemic, the committee became aware that the HSE was affiliated to the ECDC and it had a budget of €60 million per annum and 271 staff while its US counterpart had the equivalent of an €8 billion annual budget and 11,000 staff. We are here to discuss our national strategy, but surely there are inadequacies across Europe. During the pandemic, we saw how the EU 27 were able to work together and science and Covid prevention were advanced quickly. Surely there are inadequacies in the EU if the ECDC, an affiliate of the HSE, is underfunded and understaffed. Do the witnesses have comments to make on this point?

Dr. Colm Henry

I am not sure whether the question relates to cancer screening or drugs. In what sense does the Deputy mean collaboration with the-----

Deputy Cathal Crowe

The European cancer strategy overall, within the bloc.

Dr. Colm Henry

We work quite closely with other European countries. For example, we have put in place a Benelux agreement on access to medication with Holland, Belgium and Luxembourg. It has not led to the approval of a cancer drug but may in time when we have common negotiation and outcomes.

We work with other European countries on surveying likely new candidate screening programmes and participating in research to see whether they will be effective. I refer, for example, to prostate and lung cancers, which I think were mentioned in an earlier hearing.

As regards healthcare intelligence, I do not know whether Dr. McCarthy wants to comment on any work we do with other European countries.

Dr. Triona McCarthy

Yes. There is Europe's Beating Cancer Plan. It is quite a broad vehicle in terms of collaboration, and there are initiatives in it across prevention and screening. There are lessons to be learned there as regards intelligence. There is a collaboration focusing particularly on cancer inequalities, sharing comparable data across the EU in terms of benchmarking and learning from how we are doing. For example, we are quite good on things like HPV uptake in this country compared with other countries. Our tobacco control is quite good compared with others. Our obesity rates, however, are slightly above those of other counterparts. This gives us that data sharing at that level.

Deputy Cathal Crowe

I know it may not have been a question the witnesses had expected this morning, but I would like some additional information because this is a body we became very much aware of during Covid. It did some excellent work and we are affiliated to it, but an Irish cancer strategy cannot exist in isolation, particularly when we are part of a wider European bloc. We saw during the Covid pandemic nations working together and funding together and science working together. Cancer does not adhere to international boundaries, unfortunately, so if there is something on the pan-European approach, a briefing note, that our committee could be circulated with, I would very much like to see it. This is all the more relevant given the conference Dublin will host in the next fortnight.

We have seen a lot of hospices over the decades having to go out and shake the bucket to raise money. There was an announcement last winter that Milford hospice, in the mid-west, was to become a recipient of State funding - I think it was €18 million to bring it under direct State funding - and that that was to fall into line in February of this year. Where is the HSE in terms of funding the operational costs of Milford hospice, and are there plans afoot to take other hospices into the HSE's funding net?

Dr. Colm Henry

I cannot answer specifically on Milford hospice but, as with voluntary agencies that are funded by us, we have service level agreements over their activity and, of course, they would include standards and quality of care. We have a number of hospice facilities, such as the one in Cork, where they might have independent boards but they are funded by the HSE. Our relationship with these entities is quite similar to that which we have with section 39 hospitals, voluntary hospitals, in that we would enter a service level agreement based on agreed funding to provide a specified level of service, and tied into that service would be specific quality measures.

Deputy Cathal Crowe

Finally, representatives of the Irish Lung Fibrosis Association are upstairs. They will meet most of our members as this day goes on. Currently, lung cancer screening is not part of the national strategy, but their concerns extend beyond that because of pulmonary fibrosis and long Covid. If there is lung cancer, people assume there is smoking or some hereditary issues there, but there are a lot more lung and pulmonary fibrosis issues that are also going through that backlog of CT screening. It is one of the easier cancers to detect, as I understand it - I have no medical knowledge, but we are briefed on these issues - yet, coming out of Covid, a great many people are presenting with abnormalities in their lungs. Will Dr. Henry offer some commentary on that?

Dr. Colm Henry

Ms Fiona Murphy

The Deputy is correct that a mammogram is offered every two years. Repeated screenings are important because we do not always detect cancer on the first mammogram. Returning for repeated tests through the ages of 50 to 69 is very important. From that screening, we detect approximately one third of the breast cancers in Ireland, with the other two thirds detected through referrals from GPs to the rapid access breast clinics and so on. The highest proportion of cancer is in that age group of 50 to 69. Dr. McCarthy might talk about this as she has all the relevant data. Particularly when looking at otherwise well and healthy women, this is the age group on which we really want to focus because it gives us the best yield. We will find more cancers among that cohort than others.

As the age reduces, screening becomes more difficult for two reasons. First, the yield is lower. At the moment, we find approximately seven cancers for every 1,000 women we screen. That would be lower as we go down the age range.

Deputy Gino Kenny

Is Ms Murphy saying there are seven cancers detected among every 1,000 people aged 50 to 69 who are screened?

Ms Fiona Murphy

Yes. For the people referred directly from their GP because they have a lump or any other symptom, the cancer detection rate is approximately 100 per 1,000. That compares with seven per 1,000 from our screening. As we are screening a huge population of women, amounting to half a million every two years, we will detect fewer cancers. If we go down an age group, we will detect even fewer. That is one of the problems with reducing age.

The second problem is that the mammogram itself, which is the only test we currently have that is internationally proven to be useful in detecting cancer in otherwise healthy people, becomes less effective the younger the subject of the screening. That is do with the tissue in the breast, which becomes harder to read as we go down in age.

Having said all of that, there is great interest in reducing the age of breast screening recipients. We have applied to the national screening advisory committee, which Dr. Henry mentioned earlier, to ask it to consider the matter. The issue is on the committee's books. It will ask HIQA to do what it calls a health technology assessment to see whether it is worth doing this. Once that is done, it will be up to us to put any recommended changes in place. There needs to be a long-term plan for any such change. It is not just about screening. As has been mentioned a couple of times, once we are screening, we need to make sure we have follow-up services available. At the moment, we invite back approximately 4%, or one in 25, of the people who have a mammogram for further tests. We need to do that in a timely fashion. For the people who go on to have cancer treatment, we must ensure there is sufficient surgery capacity and so on. Reducing the age of eligibility for screening will require a bigger infrastructure plan.

Absolutely. In the case of all three of the cancers we screen for, the disease is twice as likely to be detected at an early stage for people who come through screening as opposed to where the disease is detected through the symptomatic route and referral by GP. The two cancer screening programmes that help prevent cancer are the bowel and cervical programmes. In the case of cervical cancer, the rate of the disease in Ireland was such that 15 out of every 100,000 women would develop it. Since the screening programme was introduced, that is down to just over ten, which is remarkable over that period.

On Senator Conway's final question as to what is next, it is absolutely around bowel cancer. I am not just saying that because it happens to be Bowel Cancer Awareness Month. I know that many people have received the packs and hopefully the committee members can put into their constituency newsletters a note of encouragement for people to take up the test which is already there.

We know that the bowel cancer test not only detects cancer early but also prevents cancer. By finding polyps on colonoscopy, we can prevent cancer happening in the future. The National Trauma Research Institute, NTRI, has already shown the evidence of the impact that our current bowel screening service has. That is very much where we want to go next. We bid for funding separately to the national cancer control programme, NCCP. We have been successful in getting funding for the breast expansion, the cervical expansion, so I am confident that we will get funding for the bowel expansion as well. As Dr. Henry said, it means the wider endoscopy services across the country need expanding. We do roughly 6,000 colonoscopies every year through the bowel screening programme but 100,000 colonoscopies are done through the national endoscopy programme. It needs to be looked at as part of the bigger and wider service around what needs to be expanded. I will be pushing to have any increase in funding to ourselves to go on expansion because of the impact bowel screening can make, and for anybody who is listening, the test is easy to do at home. It may not be the most pleasant topic but it is very easy to do and to send back in. We do what we call patient reported experience measures with patients where we ask the patients how that went for them. We get very positive feedback from the people who come through colonoscopy. It sometimes seems a bit scary but actually getting people through those tests can indeed save their lives.

Dr. Colm Henry

If I might also say quickly to the Senator and this is an important message. With the focus on screening, it is important for anyone listening not to misunderstand what screening programmes do. There are directed at apparently healthy populations. For people who have symptoms, a screening programme is not appropriate. If there are symptoms which are suspicious of breast cancer, bowel cancer or cervical cancer, it is not a question of expediting one's screening patterns, it is one of getting through to the appropriate clinics and specialists as quickly as possible.

An Cathaoirleach

It is important that we end on that note. I started off the session talking about the 215,000 people who are alive today following a diagnosis of cancer. That is the positive message out there. We focus in on the challenges within the system itself but there are many things which are working for people and I would again encourage anyone who has any concerns about their health to go and get tested. For those who have the opportunity to go for screening, they should take up that opportunity.

Both of these sessions were very useful. If someone at home has worries and if this prompts them to go and seek help, then this has been a worthwhile session today. We have also been able to focus in on many of the challenges within the system itself. I have no doubt that as a committee we will follow up on some of these. It is worrying that the HSE has applied for the €20 million expansion funding for the programme and that it was not available. As politicians, we need to follow that up with the Minister.

I thank all the witnesses for their support here this morning. I thank Dr. Henry and his colleagues from the HSE for their engagement with the committee on the important matter of the funding and implementation of the National Cancer Strategy 2017-2026. The committee will continue to keep this matter under consideration.

The joint committee adjourned at 12.35 p.m. until 9.30 a.m. on Wednesday, 17 April 2024.