Seán Crowe (Dublin South West, Sinn Fein)
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The purpose of the meeting today is for the joint committee to consider issues regarding cardiovascular health, stroke and heart attack with representatives from the Irish Heart Foundation and Croí. The meeting will maintain a particular focus on programmes, services and prevention of cardiovascular-related illnesses.

To enable the committee to consider this matter, I am pleased to welcome from the Irish Heart Foundation Mr. Chris Macey, director of advocacy and patient support, Ms Kathryn Reilly, policy and legislative affairs manager, and Ms Esther O'Shea, patient champion; and from Croí Mr. Mark O'Donnell, chief operations officer, and Dr. Lisa Hynes, head of health programmes.

We read out a short note on privilege at every meeting. 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. Therefore, if their statements are potentially defamatory in respect of 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 to the effect 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 also remind members of the constitutional requirement that they must 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 where he or she is not adhering to this constitutional requirement. Therefore, any member who attempts to participate from outside the precincts will be asked to leave the meeting. In that regard, I ask any member partaking via Microsoft Teams that, prior to making their contributions to the meeting, they confirm that they are on the grounds of the Leinster House campus.

To commence our consideration of cardiovascular-related issues, I now invite Mr. Macey to make his opening remarks on behalf of the Irish Heart Foundation.

Mr. Chris Macey:

Thank you, a Chathaoirligh, for the invitation to meet the committee today. I will address three important areas of need in this short presentation: first, the chronic lack of investment in community supports for heart and stroke patients and the Irish Heart Foundation's role in bridging this yawning gap; second, the lack of a national cardiovascular disease policy, the failure to publish the long-awaited national cardiac services review and implementation of the national stroke strategy; and, third, the need to prioritise prevention. Given that 80% of cardiovascular disease is preventable, no measure open to policymakers will save more lives, prevent more chronic disease or better help make the health service sustainable in the long term.

I will begin with community services for CVD and the solo role played by the Irish Heart Foundation in delivering national support services to heart and stroke patients. Since Covid, we have built a comprehensive pathway of practical, social and emotional support services running almost literally from the hospital gates for as long as patients need our help. These services were developed in response to a widespread sense of abandonment among stroke survivors caused by lack of access to community rehabilitation and recovery services.

They also help heart failure patients, who endure a revolving door syndrome highlighted by a 90-day hospital readmission rate to hospital of 30%, often for the want of basic information and support. Although our services focus primarily on stroke and heart failure, we also deliver supports across a broad range of conditions, including heart attack, cardiomyopathies, sudden cardiac death, congenital heart disease, long QT syndrome and people with ICDs. These services are endorsed by the HSE but have received no statutory funding to date, apart from partial CHO support amounting to around 7% of their total cost.

Patients describe our programmes and services as their lifeline. They revolve around non-medical services and supports delivered by phone, online and face to face that can be the difference between living well in the community and long-term dependency or even premature death. They prevent hospital readmission among heart patients, reduce the requirement for nursing home care among stroke survivors and remove a significant burden from front-line services. Despite a psychological impact similar to PTSD that often results from a stroke or heart disease diagnosis, the Irish Heart Foundation provides the only access to counselling for many people. This year, around one third of stroke survivors returning home from hospital nationally will be referred to our services, with thousands of heart failure and other cardiac patients also benefiting.

We are more than 90% funded by public and corporate donations and, therefore, are at the mercy of economic forces, such as the cost-of-living crisis. We are making a difference to thousands of lives but the continued delivery of these services can never be guaranteed in the absence of statutory funding. Our limited capacity as a small charity, given the scale of CVD, means we cannot give many thousands more patients the help they need without getting help from the State ourselves.

Each year, there are over 9,000 CVD deaths in Ireland, which is almost 30% of all mortality. Over 500,000 people are living with a cardiovascular condition, with 80,000 discharged from hospital each year. During a meeting with us in 2021, committee members expressed alarm that there had been no national policy for the world’s biggest killer disease since 2019. Despite the committee’s subsequent representations and a continuing increase in CVD incidence driven by age demographics, the Department of Health has still not expressed an intention to develop a policy. As we said at the time, this is a recipe for failure, with services reliant on piecemeal strategies and HSE firefighting, no long-term planning and, therefore, much-reduced prospects of funding regardless of patient need. It is noteworthy that although cancer has its own unit within the Department, CVD comes under a broad population health and non-communicable diseases unit in spite of its similar scale.

Additionally, we have a national cardiac services review that began almost six years ago, the final report of which has been on the Minister’s desk for most of this year without any indication of a publication date. The review recommends an updated configuration for national adult cardiac services. Pending implementation, cardiac care will remain in a state of limbo, with unnecessary difficulties in planning and organising services that will inevitably impact patient outcomes. Specific issues include long waiting times for echocardiograms, cardiac magnetic resonance and CT scans, and shortages in cardiac physiologist posts.

There is also a pressing need for a heart failure registry. Although at least 90,000 people are living with the condition, with another 250,000 impending cases, there is a lack of reliable real-time data. This is crucial to give health service planners a better understanding, in particular, of the causes of high readmission and mortality rates.

Meanwhile, the national stroke strategy, which is supposed to run from 2022 to 2027, has been published but is not being coherently implemented. Mainly non-recurrent funding was allocated in last year’s budget, so key staffing increases, which are its cornerstone, were largely unaddressed and there is growing concern that none of the 70 to 75 posts required under the strategy will be filled in 2024.

All of this matters. Research shows that stroke units reduce death and long-term disability by up to 20% but the national stroke unit network is already struggling, with units in Naas and St. James’s not currently meeting minimum criteria and others under severe pressure. Senior clinicians have told us that a failure to roll out the strategy could result in no stroke units being left in Ireland’s inland counties. We estimate that defunding the stroke strategy could mean some 500 cases of preventable death and severe permanent disability among patients who are not admitted to a unit. It could contribute to bed days increasing by 12,000 a year and additional requirements for long-term care resulting in no net savings in exchange for an enormous human cost.

While we must address current deficits and future-proof services for an imminent upsurge in heart disease and stroke rates, policymakers must also capitalise on the fact that 80% of cardiovascular disease is preventable. This means that most of its human toll and consequent impact on our health services is unnecessary. By adopting a stronger focus on primary prevention - transforming what is essentially an illness service into a genuine health service - policymakers could effectively tackle the continuing lurch towards unsustainability that is fuelled by the changing demographics. Crucial to this is the political will to address the factors fuelling preventable CVD, including obesity, uncontrolled blood pressure, smoking, physical inactivity, excess alcohol intake and air pollution. To provide a blueprint for policymakers, the Irish Heart Foundation commissioned the UCC school of public health to set out primary prevention policy responses in a landmark research paper that was published last month. We have also established the Irish Health Promotion Alliance, comprising members across civil society to seek greater policy focus on all chronic disease prevention.

In summary, there are three areas that we urge the committee to champion on our behalf. The first is to support an assessment of patient needs in the community and investment in community CVD services and supports, ensuring the health service puts greater emphasis on patient recovery and well-being. The assessment should measure the financial burden of cardiovascular disease. Our recent survey of heart failure patients found that 60% suffered a significant drop in income, while the vast majority struggled with the additional cost of medical bills, prescriptions, travel and household bills. Almost 40% of working-age patients did not have a medical card or GP visit card. A survey among working-age stroke survivors found that 70% experienced a substantial reduction in income and over 80% faced higher costs. Second, we ask the committee to seek a time-bound commitment from the Minister, Deputy Donnelly, to develop a new national cardiovascular policy, publish and implement the national cardiac services review and fully roll out the national stroke strategy. The third point is to seek priority for population-based strategies for primary CVD prevention on the grounds of health, well-being, equity and social justice.

Seán Crowe (Dublin South West, Sinn Fein)
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Thank you. I call Mr. O'Donnell of Croí to make his opening statement.

Mr. Mark O'Donnell:

I thank the committee for the invitation to speak this morning. I am joined by my colleague, Dr. Lisa Hynes, who is a health psychologist and Croí’s head of health programmes.

By way of introduction, Croí is a charity based in Galway that was established in 1985. Croí’s mission is to prevent heart disease and stroke, save lives and empower and support families, communities and future generations to take control of their health and well-being. Croí has almost four decades of experience working with communities across the country, from prevention of heart disease and stroke, through aftercare and rehabilitation, providing patient and family support, working to advocate for and empower patients and effect policy change. With this in mind, I would like to briefly outline some of the key challenges and unmet needs, and set out some of the high-level actions that we believe can and should be taken to address these challenges.

First, it is important to understand the burden of disease that we are facing. Cardiovascular disease is the biggest annual cause of death globally, accounting for 33% of all global deaths and one in five of all premature deaths. The burden of this disease is enormous and growing, and is particularly driven by the increase in diabetes and obesity. Cardiovascular disease is the second leading cause of death in Ireland, with an average of 10,000 deaths per annum.

Approximately 7,500 people have a stroke each year in Ireland and stroke is the leading cause of acquired adult neurological disability in this country. In addition to the human toll and trauma caused, research published last August by the European Society of Cardiology estimated that CVD costs EU member states €282 billion annually or an average of €635 per person across Europe. This report estimates that the overall cost of CVD to Ireland in 2021 was of the order of €3.44 billion, which includes economic costs through productivity losses as well as health and social care costs. The study estimated the productivity losses to the Irish economy alone amount to some €855 million in a single year which is an important factor to consider in any thorough and robust cost-benefit analysis of healthcare provision.

Against this stark backdrop, we do not have a current national cardiovascular health strategy. The last CVD strategy expired in 2019. We urgently need a comprehensive national strategy to address these critical challenges and the development of such a strategy needs to embrace the views and needs of all stakeholders. A strong patient voice is an essential element of any strategy formulation and 2023 saw the launch of Heart and Stroke Voice Ireland. This initiative, supported by Croí, is a new alliance of heart and stroke patients and will provide an effective structure to ensure the patient voice is heard.

Aside from the more comprehensive strategy piece, I must highlight that the national cardiac services review, which was carried out some years back and contains key recommendations to improve services, has still not been signed off on. We understand it is currently with the Minister. We urge that it be progressed without further delay. Given that up to 82% of premature deaths due to CVD are preventable, a preventative approach to heart disease and stroke is needed at all stages, from primary prevention to early identification and treatment of people at high risk through to comprehensive rehabilitation to reduce the risk of repeat events or further disease progression.

Earlier this year, Croí's sister organisation, the National Institute for Prevention and Cardiovascular Health, published a key position paper on advancing a prevention agenda for cardiovascular care in Ireland. This paper, which was prepared in collaboration with Croí, colleagues in the Irish Heart Foundation and leading healthcare professionals with a strong patient input, is an excellent summary of the key issues and sets out a broad range of policy recommendations based on international best practice. In addition, our colleagues in the Irish Heart Foundation recently launched an excellent document on primary prevention of CVD which adds to the growing body of knowledge and best practice.

Earlier detection and risk factor management have been key components of our work in Croí for many years and it is clear that simple checks and diagnostics can be very effective preventative tools. One example is hypertension, or high blood pressure, which is one of the most prevalent risk factors for heart disease and stroke and accounts for about half of all heart disease and stroke-related deaths worldwide. Croí regularly works with partner organisations to deliver free blood pressure checks in the community. Results from a recent campaign in County Mayo involving 1,200 people found just under half of those tested had high blood pressure at the time of measurement. About half, 46%, of the people with high blood pressure were already aware of their condition, suggesting that the other half were unaware. Roughly 25% of the people tested had high blood pressure readings and were completely unaware.

Timely access to diagnostics is another key part of the solution. In 2023, Croí published a national survey on echocardiography services in Ireland. The results of the survey highlight significant inequities between public and private patients in terms of timely access to cardiac diagnostics. For those dependent on our public health service, there are delays to appointments and diagnosis with obvious consequences for patients' health.

Approximately 6,000 adults are admitted to hospital each year with a stroke and research on the burden of stroke in Ireland predicts a 59% increase in numbers. The national stroke strategy 2022 to 2027 has set out a very clear roadmap over a five-year period with key objectives across four categories, namely, stroke prevention, acute care and cure, rehabilitation and restoration to living, and education and research.

At Croí, stroke has been a major area of focus for organisation for many years. It is in the post-hospital discharge phase of recovery that we see some of the most significant gaps in the current environment. When people finish their immediate rehabilitation programme and are emerging from acute hospital care, they require an essential network of co-ordinated support to continue their recovery at home, including ongoing physiotherapy, occupational therapy, exercise, speech and language therapy and, critically, ongoing psychological support. Stroke survivors and their families, already in a time of great trauma and emotional distress, have to self-navigate a landscape where there is a huge shortfall in essential support and services.

This year, with the support of very generous legacy donation, we have been able to invest significantly in our range of stroke supports. We have developed a stroke day programme and acquired a community minibus to meet the transport needs of those we serve. We will shortly begin construction of a new dedicated stroke wing at Croí in Galway which will be operational next year. In 2024, we will also launch a new mobile health infrastructure to carry out preventative health checks and research as well as raising awareness and education throughout the country. This investment is very positive and represents a step change in the level of services we can deliver. In a national context, however, far more needs to be done in terms of resourcing and implementation across the four categories set out in the national stroke strategy, especially in the area of prevention. We work closely with the acute hospital stroke teams in our region and are deeply concerned at the impact the moratorium on recruitment will have for a service area that, in many respects, was under-resourced to begin with. We urge that this matter be reviewed.

In summary, we face significant challenges from the burden of heart disease and stroke in the short to medium term. We need to prioritise and expedite the preparation of a new national cardiovascular health strategy and ensure that the national stroke strategy is fully and properly resourced. Both strategies need clear implementation and delivery plans, with definitive metrics and timelines, underpinned by a proper resourcing and financial base to address what are the most pressing public health challenges we face as a society.

Compared with the medium-term issues, given an ageing population, rising levels of obesity, sedentary lifestyles and a raft of broader environmental factors, the long-term challenges will be immense but are not insurmountable. The solutions will require the political will to make brave decisions to drive major policy changes on a societal level, taking a much broader perspective and a population-level approach to prevention, such as embedding clear health criteria and objectives into our spatial and land-use planning framework at national, regional and local level, to give just one example.

Many of our existing approaches are not adequately addressing the current burden of cardiovascular disease. The same approach will certainly not be enough to meet increased needs in the future. We know what is coming down the track. We know the challenges will increase significantly. We know we need to take radically different approaches to get ahead of the problem and we need to start to do so now.

Seán Crowe (Dublin South West, Sinn Fein)
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On behalf of the committee, I thank the organisations for the work they do for so many people.

Seán Kyne (Fine Gael)
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I welcome Mr. Macey, Ms O'Shea, Ms Reilly, Mr. O'Donnell and Dr. Hynes to the committee. I understand Mr. O'Donnell is taking over as CEO of Croí on 1 January. I thank the current CEO, Mr. Neil Johnson, for his stewardship over a number of years.

The statistics that one in two people will contract cancer at some stage in life and that one in three will die of the disease are ingrained in people. The statistics on heart attacks, heart failure and mortality might not be as well known. That is something we all have to highlight. It is still a serious cause of death globally and in Ireland. Most people can understand what a heart attack is. It is portrayed quite vividly in films, drama and so on. Of course, heart failure is much less well-known among the general public and it is important that people recognise it as well.

The last strategy ended in 2019 and we do not have a new strategy. What will a new strategy do for services? Do the witnesses hope it will advocate for State investment? How will it inform their work?

Mr. Chris Macey:

I will answer that before handing over to Ms Reilly. We have had a cardiac services review on acute hospital services around heart disease. The four stages are prevention, pre-emption, crisis and post-crisis. There is no holistic approach to policy around cardiovascular disease. As our statements pointed out, that is putting services in limbo and it prevents workforce planning and the people responsible for running services from planning and delivering them in a coherent way.

Likewise, with the national stroke strategy, bits of money have been found for it. There is an implementation plan, but it has not been rolled out in the way it was supposed to have been. A small number of posts have been filled, but many posts that should have been filled have not been. Every year, there is no money and then there is a bit of money but no coherent and consistent approach. Services need to be rolled out.

We were disappointed when the national stroke strategy came out because it is very focused on acute care. There is not much on life after stroke, which is a huge area of unmet need in Ireland. We made those views very clear at the time. Even in the limited form in which it was delivered, it is not being implemented.

The unmet need is growing all the time.

Seán Kyne (Fine Gael)
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Is that a resourcing issue?

Mr. Chris Macey:

It is a resourcing issue, but it is also about planning. If you have a strategy and you have signed it off, you should really deliver it. As I said in my opening statement, it is actually cheaper to deliver the strategy and spend the money on it than not to because not delivering it means longer stays in hospital and more nursing home places being required. The cost of that is huge.

Seán Kyne (Fine Gael)
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Mr. Macey said that there is a growing concern that none of the 70 to 75 posts required under the strategy will be filled in 2024. What type of posts is he referring to? Is it a range of posts?

Mr. Chris Macey:

It is across all specialties. There are around 16 different specialities that go into delivering stroke care. There are consultants, nurses, physios, speech and language therapists, occupational therapists, psychologists, etc. The key to reducing death and disability in a stroke unit is having all that expertise in one dedicated space. We just do not have that at the moment. The information I am getting is that stroke units around the country are under huge pressure. Not funding the strategy is a false economy, basically. We did research with the ESRI in 2010 that showed that out of the direct cost of stroke to the economy of up to €557 million, €414 million was being spent on keeping around 5,000 people in nursing homes. Less than €7 million was being spent on the community rehabilitation services that can keep people out of long-term care. We have a situation where there is plenty of money being spent on stroke, but it is not being spent in the right places. Essentially, the system is waiting until after it can help people before spending large amounts of money on them. That just does not make any sense to us.

On the Senator's question on the broader cardiovascular plan, I might refer to Ms Reilly.

Ms Kathryn Reilly:

I will briefly touch on that. The lack of a comprehensive national cardiovascular health policy is detrimental because such policies provide the overview and the impetus from the Department of Health itself. They facilitate planning and prioritisation. Many of the problems we have in terms of the stroke strategy stem from the fact that there is no comprehensive policy to begin with. The policy that was in place until 2019 dealt with the broad spectrum of services from prevention to rehabilitation and everything in between, including the acute services. The national review of cardiac services, whose publication we are awaiting, only deals with one subset of that. The stroke strategy is one subset of that. When you do not have a national policy or, indeed, a designated official within the Department to drive that, there are a lot of problems. There are problems in terms of the implementation in the HSE because we do not have that impetus, someone to drive it forward and something to be accountable to.

In terms of the lack of publication of the national review of cardiac services and what it means for services and even for us, we know from cardiologists and from the clinical advisory groups on different subspecialities that they cannot plan or prioritise. They have provided documents that set out the resource requirements. Until that review of cardiac services is published, they cannot drive forward with looking for the resources required.

Seán Kyne (Fine Gael)
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Mr. O'Donnell talked about rehabilitation programmes in his opening statement, and "critically, ongoing psychological support". Can he elaborate on that?

Mr. Mark O'Donnell:

Certainly. One of the things we see most often in the work we do day-to-day with stroke survivors is the lack of psychological supports. Looking at the after-effects and the impact of a stroke on the patient, 35% of people who have had a stroke have some cognitive impairment post stroke in addition to the physical toll of it, which has huge psychological impacts on the individual. Looking at it further, up to 30% people who have suffered a stroke will experience depression at some stage in their post-stroke phase. That is a huge burden on people that is not being adequately addressed at the moment. More broadly, when we speak with stroke survivors and their families, the phrase that is often used is that they go off a cliff when they come out of the acute services. The supports just are not there. They are trying to self-navigate through that landscape and find out what supports might be available and so on. The psychological support is absolutely huge. It is one of the biggest gaps we see there. I might refer to my colleague, Dr. Hynes, to speak to the psychological input.

Dr. Lisa Hynes:

In the preparatory work done in the development of a national stroke programme, really significant gaps were identified. As a result, the need for psychological support was one of the areas very much highlighted in the national stroke programme. As been pointed out by the rest of the panel, it is really about the implementation. At times, as that review was being conducted, there were no psychological supports available across the country for people who had experienced a stroke. People often describe it as a chain reaction. The whole family is impacted when a member of the family has a stroke. The gaps are vast and absolutely need to be addressed as part of the implementation to take care of all aspects of rehabilitation. The psychological piece is so central because of the mental health implications. Recovery also requires a huge amount of work, effort and energy by the individual and family members involved, and psychological well-being is a huge part of that.

Seán Kyne (Fine Gael)
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The witnesses have mentioned prevention. Ministrokes are a precursor to a more serious stroke. Is there any way to get the message out in terms of the signs? You often hear that someone has had a stoke, and then they find out there was a series of ministrokes prior to that. Is there any way to get that message out?

Mr. Chris Macey:

What actually happens is that campaigns such as the F.A.S.T. campaign, which has been really effective, can have a negative impact on TIAs, or ministrokes. Because a TIA is often not as dramatic as a stroke might often be, when people have them, they are less inclined to seek the immediate medical help that they need. It is something that we are working with the national stroke programme on. We have had discussions with it about promoting that. It is really important, as the Senator has said. There are some fantastic TIA clinics around the country, and there is a lot of great expertise going into that area.

Seán Crowe (Dublin South West, Sinn Fein)
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Senator Black is next.

Mr. Chris Macey:

In answer to that, I will take obesity as an example. We had no obesity problem in the 1970s. It is something that is new and really is a product of environmental factors and commercial determinants. We now have a situation where 85,000 of the children living on this island will die prematurely due to being overweight and obese. Looking at the evidence around what the key drivers of that are and what has changed since the 1970s, when it was not a problem, to now, there are four factors. There is the ubiquity and the relative cheapness of food. Food Safety Authority of Ireland research has showed that an unhealthy calorie is up to ten times cheaper than a healthy calorie.

There is excessive marketing of junk food, particularly to children, who cannot resist what are essentially some of the cleverest marketing brains in the world. Also, there are increasingly sedentary lifestyles. Unfortunately, this trend has been exacerbated by Covid. We have a manifesto on obesity and there are many committees and Department of Health groups that have considered what needs to be done, but there are three things that need to be done first. The first is a matter of political will. The Government has to say it is going to deal with this problem. Second, we should just stop the marketing at children of unhealthy food that poisons them. Third, we must take vested interests out of the debate. There are vested interests involved in the decision-making process around much of this. These are the things we need to do. It is not about services or waiting until people get sick; it is about stopping people from getting sick in the first place.

The same applies to tobacco and e-cigarettes. One in seven of all our deaths is tobacco related. There are 4,500 deaths per year in Ireland caused by tobacco. That is 12 deaths per day. If there were 12 deaths per day on the roads, something would be done about it. We took strong action during the Covid epidemic, but more people died from smoking during that epidemic than from Covid. They are still dying and we are not doing enough about it. We have lost our way in this area. It is really good that the Government has now started consultation on protecting children from e-cigarettes, including the flavoured kind. There has been a huge increase in vaping, which is linked to a higher rate of smoking. Increasing the legal age of the sale of tobacco to 21 has an effect. I hope we will get our mojo back on smoking because we really need to. Not enough is being done. Other jurisdictions, such as the UK, which is considering phasing out smoking entirely, are way ahead of us.

Ms Kathryn Reilly:

The easiest thing to say to put us in no doubt, and as mentioned in the substantive document Professor Ivan Perry produced on preventing cardiovascular disease, is that the results from large-cohort studies show no amount of alcohol is protective against cardiovascular disease. We have all heard in sensationalising media that there are protective effects, but there are not. We know from research, a UK Biobank study with Mendelian randomisation, that the risk of cardiovascular disease increases with the amount of alcohol taken and that there is no protective effect. This is something we wanted to get across during the passage of the Public Health (Alcohol) Bill. An increased intake of alcohol has an effect in terms of atrial fibrillation, stroke and various cardiovascular diseases. We have to say very loudly and clearly, based on research, that there is no safe level.

Ms Esther O'Shea:

As a heart patient myself, I echo what Senator Kyne said. We are very little known about in today's society. We heard earlier about psychological supports for stroke victims. Psychological supports are required for all heart patients, irrespective of their condition. There is a huge gap in respect of all heart disease patients. At 34, I was diagnosed with heart failure. We are talking about preventive measures today but I am not a typical heart failure patient. I was fit and healthy, not obese, did not smoke and played sport all my life. I was not among the 80% whose cases could have been prevented. I am living with an inherited heart condition. We need to discuss those people born with congenital heart defects. They comprise a large proportion of our society who are lost and forgotten about. They come up through paediatric care and move into adult services, where they are in limbo. The services of cardiovascular patients, whether they have had a stroke, heart failure or atrial fibrillation, can all be shared. I am referring to moving from paediatrics to adult care.

The Senator mentioned the heart failure registry. There is not one source of heart failure patients online. My file in Cork is a paper file. At the time of the Covid vaccine, a cohort of young people living with heart failure was forgotten about. When people asked who they were, nobody knew. Every hospital had its database, but there was no joined-up thinking. There was not a single database. If the HSE and Department of Health knew the volume of people and could assess their needs, they would see that many of those needs could be dealt with together and that the gap could be closed together. However, we have to identify the patients and then assess their needs. Then, together, we can have a conversation about psychological and financial supports and benefits, and about bringing people back into the workforce.

It is very important to mention preventive care. People who have an MI and are rushed to hospital do not know their disease may be inherited. They do not know their family legacy and are not aware of it. They are treated in acute services with a stent or whatever procedure is required and then go home. It is asked whether they smoke or are obese. Preventive measures must also include those with a family history of heart issues. Better genetic testing services are needed, and better screening is needed for families with a history. The population has grown phenomenally in recent years. With that, a large number of people are going to hospital with unknown cardiac issues. We need to address and support them, when they are in hospital and more so when they come out. The heart registry is one of the main sources by which we can do this. We can contact those concerned, collaborate and share resources to meet their needs.

Mr. Mark O'Donnell:

A lot of it comes back to having a strategic approach in the first place. We do not have this. We need a national cardiovascular health strategy resourced with a proper implementation plan and backed up with the proper metrics and research. Key components of this are the cost–benefit analysis and the analysis of the economic impacts.

On the European aspect, there is an event on this week in the European Parliament in Strasbourg. Some of our colleagues, and also some from the Irish Heart Foundation, are there. They are calling for a Europe-wide action plan for cardiovascular health, which currently does not exist. This is not just an Irish problem. The hope is that a European strategy will be put in place that will act as an overarching one for the national strategies of each of the member states. Significant work is ongoing in this regard. However, the economic aspect and the cost–benefit analysis cannot be considered in isolation. This would be symptomatic of the approach to date, which has very much entailed measures in isolation and has not been joined up or coherent. It is a question of overall strategic planning and implementation.

Seán Crowe (Dublin South West, Sinn Fein)
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Unfortunately not.

David Cullinane (Waterford, Sinn Fein)
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I thank the witnesses for their opening statements. Last week, we had a very frustrating session with the Department of Health and the HSE. I will not go into the issues now. However, the substance of it was that it takes far too long to get anything done in healthcare. The delivery of some of the big picture reforms we are awaiting is moving at a very slow pace and there is no urgency with or funding behind many of the measures. It seems to be groundhog day. It is similar with the national strategies, or lack thereof.

Mr. Macey's opening statement was hard-hitting, and understandably so from his perspective. His organisation does good work but obviously needs the Department to have a cardiovascular disease, CVD, strategy, in the first instance, to come in behind it and then for that strategy to be properly funded and delivered. Mr. Macey spoke about the national cardiac services review that began almost six years ago. I was one of the five Oireachtas Members who sat in a room with the then Minister for Health, Deputy Harris, and the former Chief Medical Officer, CMO, who was also at that meeting. Senior officials from the Department and the HSE were in attendance when that commitment was given. It was given on the back of the Herity report on cardiac services in Waterford. A long campaign took place in the south east on that issue. We had regular meetings with the Minister for Health who signed off on a national review, yet here we are six years later with still no sign of that review. To be clear in terms of distinction, my understanding of that review is that it looks at the delivery of acute services, particularly specialist services, primary percutaneous coronary intervention, PPCI, and where they should be located. Even when that review is published, it will not be a cardiovascular policy. There is a clear distinction between the two. Will Mr. Macey clarify that?

Mr. Chris Macey:

That is exactly right. This refers to acute services. It is not the totality of what people with heart disease or stroke require.

David Cullinane (Waterford, Sinn Fein)
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I have not seen the review and do not know what it is in it, although I know it is sitting on the Minister's desk. Even if it is published, it will make recommendations around specialist services in acute hospitals but that is it. All the other pieces of what would be a CVD strategy still need to be done. There is no indication yet that there is any substantial work done by the Department or that it is in any imminent. Has the Irish Heart Foundation been involved in any discussions or meetings with the Department or the HSE on the new strategy?

Mr. Chris Macey:

We are not aware of any intention or any preliminary work that has been done on it. Likewise, we are not aware of any evaluation or analysis done on the previous strategy, the ten-year strategy that ended in 2019. That was a superb document. It was an excellent document that covered the whole gamut of what services people require. It brought in stroke for the first time in a national policy as well. It has just disappeared into the ether. As far as we are aware, nobody has looked at the progress that has been made, the lessons learned, what has not been done and what needs to be done out of that. That is a huge waste.

David Cullinane (Waterford, Sinn Fein)
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I have a real concern about some of these national strategies. The previous cardiovascular strategy was a very good one, as Mr. Macey rightly said. We see across mental health and in different areas that plans, visions and strategies are put in place and we all buy into them but they rarely get implemented in full. It is often piecemeal and funding is at the whim of a Minister in any given budget. We will get to that in a moment in terms of the stroke strategy and cardiovascular strategy for 2024. When a comprehensive strategy is done and it is not even reviewed, never mind doing planning for the next one, that is a clear failing.

I acknowledge that the two groups before the committee have been writing to us for some time and when they appeared before us a number of years ago they made a similar request that we follow up with the HSE and the Department, which we did. Despite this, we are still waiting for a review that has been six years in the making and is sitting on the Minister's desk, there has been no review of the previous strategy and there is no sense of when the next strategy will come. That is unacceptable.

I will address the stroke strategy which offered some good news, I believed. We have a new national stroke strategy, again with lots of good stuff in it. It is perhaps too concentrated on the acute side again. What impact will the lack of any additional funding in budget 2024 have on the implementation of that stroke strategy?

Mr. Chris Macey:

The national target is to admit 90% of stroke patients to a stroke unit. We have attained a level of 70%. As I said, getting into a stroke unit is the difference between leaving on someone leaving on their own steam and in relatively good condition and death or permanent severe disability in 20% of cases. That figure adds up to 1,800 strokes every year. There are 6,000 stroke patients going into hospital every year so approximately 1,800 of them are not getting into a stroke unit. The hospital with one of the biggest catchment areas in the country, St. James’s Hospital, does not have a stroke unit and has not had one since the Covid-19 pandemic. The stroke unit in Naas General Hospital is not operating and there are many others under severe pressure, which may or may not meet minimum standards.

David Cullinane (Waterford, Sinn Fein)
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Before I address the representatives of Croí, I will make a number of points. The Irish Heart Foundation's opening statement refers to growing concern that 70 to 75 posts required under the strategy for 2024 will not be delivered. I would say it is a certainty they will not be delivered because there is no new additional funding. We had that clarified at this committee a number of weeks ago by the Department. We also have a recruitment embargo in place. While we were recruiting between 6,000 and 7,000 additional net staff a year for the past three years in the health service, the maximum for next year is 2,200. I would say there is a good chance that the vast majority, if not all, of those posts will not be filled.

The opening statement indicated that this could mean some 500 cases of preventable deaths and severe permanent disability among patients who are not admitted to a unit. It mentioned bed days increasing by 12,000 a year and an additional requirement for long-term care resulting in no net savings. Essentially this means that delayed care and not providing these supports mean that people will ultimately be in a worse condition and will need more care and that this does not even make sense from a cost-benefit perspective because we will spend more on aftercare because we have not properly funded the stroke strategy in the budget for next year. Is that a fair assessment?

Mr. Chris Macey:

It is. It is almost certain that the 70% admission rate to stroke units will go down. On the basis of what we know, we estimate it will fall by 10%, which equates to another 600 patients and between 90 and 120 cases of death or avoidable disability. These decisions have massive real consequences for people. St. James's Hospital is going to return a figure of zero for the number of people who got into a stroke unit this year because it does not have one. Those figures are going to go down. Let us not forget either that the stroke rate is going up all the time. The median age of stroke is 73 and there are more and more 73-year-olds, so there are more and more strokes. As Mr. O'Donnell said, the stroke rate is going to go up by almost 60% by 2035. Our services are not even standing still. They are diminishing and the burden is growing. A stroke physician said to me the other day that Ireland is the only country in Europe that is actually closing stroke units down.

David Cullinane (Waterford, Sinn Fein)
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I ask Croí to answer the same question.

Mr. Mark O'Donnell:

I think the stroke strategy itself is a very honest document in that it makes clear that it does not contain all the answers and there are other longer term solutions. It is a medium-term document.

In terms of the funding piece, there is no doubt there will be significant impacts for patients who will feel the brunt of that. One of the fundamental problems we have with strategies, whether it is the national stroke strategy or a national cardiovascular health strategy, is that we are looking at multi-annual strategies with very complex service delivery but on a 12-month budget cycle.

That just does not work and it never will. There needs to be funding that is ring-fenced and on a multi-annual basis to support these plans and to enable the people who need to do their jobs to go and plan these services with some certainty about funding and resources. We are in regular contact with the clinicians, particularly in Galway, and there are posts there that are absolutely essential and that it now seems will not be filled. These are posts such as therapy assistants, speech and language therapists, and essential services for post-stroke rehab and support that were needed in the first place. There was a deficit there in terms of those roles and now that situation will be further exacerbated by the funding issues.

Róisín Shortall (Dublin North West, Social Democrats)
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I thank the witnesses for their presentations. It is hard to believe that conditions that have such a massive impact on people's lives, on the health service and on our economy are so neglected. It is difficult to figure out why that is the case. Do the witnesses have views on that? There obviously is an impact for the individual in terms of death rates and disability. As this then takes up so much of the health service and given the costs involved, why is it not being addressed? Do the witnesses have any views on that? I know both organisations have said that there is an absence of political will but it seems to be a no-brainer that these are two major areas that need to be addressed. There needs to be a clear strategy and it needs to be funded. That is in everybody's interest. Is there just a blind spot somewhere in the Department?

Ms Kathryn Reilly:

The lack of national policy is a real impediment, as is the lack of any designated officials within the Department of Health to drive it. I know it sits under the CMO's office but there is so much under the CMO's office. Reviews of the previous plan were mentioned earlier and whether nothing was done. I made an FOI request a number of years ago on the previous cardiovascular health policy and how it would feed into the national review of cardiac services because responses to parliamentary questions were telling me it would be reviewed in the context of the national cardiac services review. I did that FOI request and apparently that was banged around the Department a number of times to figure out who was actually responsible for answering it. Eventually, an official from the National Patient Safety Office got in touch with me and she said that this FOI request had fallen on her desk and that for the moment, she only had half a day a week on these issues. She was an official and she said she did not know about any review of this policy. Yes, there will be a new project manager responsible for taking the review of cardiac services forward. However in terms of the overarching policy, this FOI request was sent to this person's desk, who had half a day on this policy. There is nobody there driving it and that is really concerning.

Róisín Shortall (Dublin North West, Social Democrats)
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Did something initiate the previous ten-year strategy, which our guests have said was very good? How did that come about and how is it that we do not have that continuing?

Mr. Chris Macey:

I was not in this space at the time but there was some political will around it.

Róisín Shortall (Dublin North West, Social Democrats)
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The then Minister had a particular interest in it.

Mr. Chris Macey:

That was what it really boiled down to.

Ms Kathryn Reilly:

There had been a policy before that again. It was called Building Healthier Hearts and there was a European strategy also. As Mr. O'Donnell mentioned having a European policy is also important. There was momentum there but that seems to have been completely lost.

Róisín Shortall (Dublin North West, Social Democrats)
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Have both organisations met the current Minister?

Mr. Chris Macey:

Yes, but not on the broad issues. We have met the Minister on specific issues around stroke and around e-cigarettes and tobacco.

Róisín Shortall (Dublin North West, Social Democrats)
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Okay, but have they met the Minister on the issue of the review and of the strategy?

Mr. Chris Macey:

No.

Róisín Shortall (Dublin North West, Social Democrats)
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It is difficult to understand why we are not making progress in this area.

Ms Esther O'Shea:

As a heart failure patient, as a young patient, I have been on this journey for nine years. The Deputy asked why there is no strategy, no plan and no policy. We are forgotten about because we can be discharged. People have this perception that you can live with this. Yes, you can live with a chronic disease but to live with a chronic disease affects every aspect of one's life. From the minute you wake up in the morning, you are reminded by your pillbox, your home monitors, your weighing scales, and the jug you fill for your restricted fluids. That is most cardiovascular diseases. That is heart failure. Yes, you can live with these diseases but how well patients can live with it needs to depend on the support from the policymakers. Because people are discharged they say, "Oh, they are out in the public now". Somewhere along the line, the patient is caught between the public health nurse or social welfare but a lot of us are not and we are completely in limbo.

Róisín Shortall (Dublin North West, Social Democrats)
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There is no joined-up thinking.

Ms Esther O'Shea:

There is no joined-up thinking. For many years, cardiovascular diseases were associated with being an ageing disease. It was seen as affecting people who were of a certain demographic. Within that demographic, there were already supports in place because people in that demographic are already in the system and already have a medical card. They already perhaps attend a geriatrician or are visiting a doctor because they have access; they have a medical card. However, cardiovascular disease is not biased. You can be any age. In our heart failure support group, we have people who are as young as 30. I was 34 years old. It affected the size of my family and my ability to follow my career; I do not work outside of the house any more. It affects your ability to travel, how you rear and how you support. Living with a chronic disease such as cardiovascular disease affects every aspect of one's life. As well as creating anxieties, social isolation, and depression, it creates a sense of "How do you cope?".

Róisín Shortall (Dublin North West, Social Democrats)
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There is the individual and then there is also the family and the impact on them.

Ms Esther O'Shea:

One hundred per cent. For so long it has not been placed as a relevant priority because the family and the community have supported patients and that can no longer be sustainable.

Róisín Shortall (Dublin North West, Social Democrats)
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It is often said that money talks. With regard to cost-benefit analysis, there has been reference to a cost-benefit. Is there an up-to-date cost-benefit analysis on the burden of stroke and heart disease?

Mr. Chris Macey:

Not across both. There was an ESRI report in 2010 and we also had a further ESRI report on early supported discharge programmes that was published in 2014 or 2015.

Róisín Shortall (Dublin North West, Social Democrats)
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There is nothing recent.

Mr. Chris Macey:

No.

Róisín Shortall (Dublin North West, Social Democrats)
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Is there a model of care?

Mr. Chris Macey:

There are different models of care for different conditions. There are models of care for heart failure, for example, and for stroke.

Róisín Shortall (Dublin North West, Social Democrats)
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There are no-----

Mr. Mark O'Donnell:

Can I make a point about the Deputy's previous question about the cost-benefit analysis? It is important we do not lose sight of the fact that we have a particular set of challenges that face us today and a particular burden of disease. That will increase exponentially into the future. Sometimes we look at the cost-benefit analysis in today's terms, that is, what will be the expenditure across the next 12 months or across the next year in terms of the economic cost. This is back to the question about why there is not a national cardiovascular health strategy. I am not sure if there is a clear appreciation of the scale of the problem that is coming down the line. What we have today is a massive challenge that we are not meeting. What will happen in the future is that all of the metrics and markers for risk factors are going in the wrong direction. The problem is increasing all of the time. We are not keeping pace with the problem we have at the moment. That cost-benefit analysis piece is extremely important but it has to be forward-looking as well and a key part of the strategy.

Róisín Shortall (Dublin North West, Social Democrats)
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Okay, fine. Both organisations stress the importance of prevention. I admitted recently that we as a committee have not spent an awful lot of time on prevention. It is probably because of the fact there is crisis in so many aspects of the health service and we tend to deal with the crisis stuff rather than the longer-term stuff that could make a real difference. We also discussed yesterday, at our own meeting, that it is our intention to have the alliance in sometime early in the new year to put the case to us about the commercial determinants of health. It would be the committee's intention to invite the Minister of State with responsibility for health promotion. We have not had her at the committee since she was appointed. We hope to have a session that will concentrate on the whole prevention area.

Mr. O'Donnell made the point about the huge distinction between public and private services. With regard to public services, is the difficulty that there is not adequate funding or is it that there are not adequate staff because we cannot get staff? Which is the bigger problem?

Mr. Mark O'Donnell:

It depends on the service we are looking at. There are multiple factors involved there. Looking at any sort of organisational performance, it will be a mix of people, processes and systems. If there are gaps or failings in any one of those three, there will be issues.

Taking the survey that Croí carried out on echocardiography services, which is a critical diagnostic tool that is used, we found that the average waiting time for an echo was six months in the public system, up to 12 months in some cases. A person with private health insurance could access that typically within a month, which is a huge difference. There is a factor of six there in terms of delay. There are a number of issues there. One is that there is a shortage of cardiac physiologists to carry out the tests in the first place. Looking down the track, there is not a sufficient pipeline coming from third level with that qualification to meet future demand, let alone keep up with what we have now. The other part of that is around the systems. For example, somebody accessing private healthcare for an echo can get a direct referral in for that. Somebody in the public system has to be referred by his or her GP into an outpatient clinic to see a cardiologists and then referred on for the echo, so there is an extra layer, more friction and another step to go through.

Róisín Shortall (Dublin North West, Social Democrats)
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On that last point, I remember that last year Croí demonstrated having a cardiac physiologist in and how, with just a laptop, that person could be a gatekeeper for a lot of services or preventative work. Is anything being done about the lack of physiologists? Is anybody taking that up at ministerial level? Maybe it is the Minister, Deputy Harris, who-----

Mr. Mark O'Donnell:

We have raised it and we met the Minister, Deputy Harris, after that report was published last year. It is difficult. A lot of it is down to resourcing at third level institutions in terms of providing the courses and the specialist training that is required and trying to have a campaign to attract people into that specialisation. It is a sub-specialisation from clinical measurement.

Róisín Shortall (Dublin North West, Social Democrats)
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Okay, but is the key issue that there are not enough places at third level? I would like to get to the bottom of this.

Seán Crowe (Dublin South West, Sinn Fein)
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This is your last question, Deputy Shortall.

Mr. Mark O'Donnell:

More places need to be provided. Yes. That is part of it.

Neasa Hourigan (Dublin Central, Green Party)
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I thank the witnesses for coming before the committee. I will start with that issue as to where this sits within the system, which I know can be a bit dry in terms of what is actually happening. It is striking that there is a lot of frustration in the room. Usually, when we have advocates for a particular area come in, and they all agree on the shortfall or the shortcomings in our approach or our resourcing, often what we get back from the Department, whether it does it or not, is "We recognise the shortfall and we are working on it". Sometimes the Department does not work on it, but at least it recognises it. It is striking that that is not the case with this, in that the Department seems quite happy with the way things are going. I am curious about that.

As to where this sits and the clinical advisory group and, in general, the national heart programme, NHP, on its website it has information to the effect that it created subgroups to identify what would be principal areas for operation in the next few years. What was the witnesses' interaction with that system? Have they had any interaction? Have they seen any reports from those subgroups? Within the NHP, is that a front-facing thing? Is the NHP giving the witnesses information as to how that is working?

Ms Kathryn Reilly:

The national heart programme relates to the HSE. It is clinical and has to do with operationalisation. There is space for patient representation on the NHP. There currently is not, so it is very-----

Neasa Hourigan (Dublin Central, Green Party)
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There currently is not?

Ms Kathryn Reilly:

There is no patient representation on the national heart programme currently, as far as I am aware. There is scope for a patient representative organisation to be on it but, as far as I am aware, there is no patient representative organisation-----

Neasa Hourigan (Dublin Central, Green Party)
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Has there ever been since the programme's inception in 2020?

Ms Kathryn Reilly:

Not that I am aware of.

Neasa Hourigan (Dublin Central, Green Party)
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We are in 2023 and there has never been any patient advocate within the-----

Ms Kathryn Reilly:

Not that I am aware of. We have been talking internally about it and very much advocating for it because patient involvement in services is critical. Ms O'Shea is very vocal on this also. The heart programme, however, is very clinical. We have a medical director who sits on some of the clinical advisory groups, but they do not have to speak to us as patient representative organisations. Because there is no patient representative body on that, as far as I am aware, we do not have much information coming from it. As I said, it is about the clinical organisation of it; it is not necessarily about the policy and the people who guide that.

Neasa Hourigan (Dublin Central, Green Party)
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Would the fact that it is so clinically focused have an impact on its reaching out to more community settings and the longer-term rehabilitation issues and how it interacts with that primary care? Is that one of the concerns about the NHP?

Mr. Chris Macey:

This is an area where Ms O'Shea has been advocating.

Ms Esther O'Shea:

We spoke earlier about the absence of a policy and why there is one. I say the following to create awareness of living with cardiovascular disease. Most heart patients self-care. Therefore, the burden rests on the patient. It rests on managing your medications and taking care of yourself. There is a whole care plan associated with living with cardiovascular disease. Therefore, the burden is placed on the patient, which is a huge burden on a sick person, a vulnerable person, and there are no supports in the community for that. There are no heart failure supports within the community, no hubs, no psychological supports and nowhere to guide them to help them live better. I refer even to such things as changing your medications, the side-effects of changing meds, titrating up or titrating down and managing low blood pressure, dizziness, breathlessness, palpitations, aches and chronic fatigue. That is managed and borne by the patient. No other disease is borne by the patient himself or herself with very little support bar family. Therefore, there is a huge gap between coming out of a hospital and going to live at home or trying to cope or live with the disease. I spoke earlier to Deputy Shortall about living with a disease. To live with a disease does not mean it is easy. It is a struggle every day. You have to adapt every day. No one day is the same with any chronic disease, but definitely not with a cardiovascular disease. You get out of the bed in the morning and some days you can stand on two legs and other days you cannot. You have to roll with the bad days and you hope tomorrow will be a better day. That, again, is borne by heart patients, with zero support in the community. They have no one to ring.

Thankfully, we have the likes of Croí and the Irish Heart Foundation. They have been our lifeline in providing a heart failure nurse online and providing peer-to-peer supports so one can talk to other patients and say, "I am really dizzy, I have palpitations, I have a racing heart, my blood pressure is in my boots." It is a matter of being able to talk to someone about that because that is not going to change. This is my disease. I walk with it every day. It is a matter of being able to discuss that with someone, to sound it, to get reassurance and to say, "If you do not feel better tomorrow or if your weight has increased and you are retaining fluid, you need to go to accident and emergency." Going to accident and emergency, however, is a chore in itself. There should be direct access for cardiovascular patients such that they do not have to go to accident and emergency and there is a rapid chest pain clinic or a heart failure clinic to which they can have access.

Mr. Chris Macey:

Those are insights that any clinical advisory group should be hearing and they are not being heard at the moment.

Neasa Hourigan (Dublin Central, Green Party)
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Exactly, because nobody is representing these patients on the NHP.

Ms O'Shea talked a little about the difference between the cohort who might experience an event and then maybe need quite long rehabilitation and people who may be born with a congenital issue. It strikes me that there is a parallel between type 1 and type 2 diabetes. We have had a very successful approach to type 1 with the DAFNE scheme, which is very much about one-on-one lifestyle management.

Ms Esther O'Shea:

One hundred per cent.

Neasa Hourigan (Dublin Central, Green Party)
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Is that the kind of thing Ms O'Shea would like to see for people who have congenital issues with which they have to live for ever and ever?

Ms Esther O'Shea:

Absolutely, and congenital heart disease is different from inherited heart disease too. They are two different diseases. Lifestyle support is huge, not only in reducing readmissions. As a patient, during my first two years of diagnosis I was in and out of hospital and very sick. Would I have needed to be in and out of hospital as frequently if there were supports within the community? It is questionable. When there was no support there, my only go-to was back into hospital - and it was not for a day or a week. I am talking about long stays.

Lifestyle management is a huge part of this, as is how we live with the disease and how we manage and access drugs. I refer to simple things like generic drugs and the supply chain. I and other cardiovascular patients depend on medicines. I cannot afford to miss one dose or not to take medicine. Medicine is why I am here today. We have to ensure there is a robust supply chain for these medicines going forward. Lifestyle encompasses all that: medication, healthy eating, sleep, psychological supports, physiological supports and financial supports. Many people out there are unable to return to work, had careers, worked hard, are educated people and are no longer in a position to work, and they are forgotten about.

These people are empowered every day, however. Heart patients are one of the most empowering patients I have been associated with because every day they get out of bed in the morning and have to take care of themselves. No one tells them, "You need to take your meds today: one in the morning, two at lunchtime and three at night. You need to weigh yourself, fill your jug with restricted fluids, manage your salt intake, count your steps, make sure your heartbeat does not go over a certain rate, take your blood pressure and, by the end of the week, send an email to your GP."

That is how empowered heart patients are. We have been doing that for so long that we have become complacent. No one wants to listen to us because we have just been getting on with it and doing it but we are speaking up now. We have to get support because the population is growing.

To touch on the national cardiac services review, six years ago, I attended a public consultation as part of that review. Patients, palliative care consultants, carers and parents travelled to Dublin and spent a full day at that consultative discussion. That meeting was facilitated and our needs, desires and views on where things were in the system were taken down. My needs as a heart failure patient six years ago were very different from my needs today. When that review is published by the Minister for Health, how current will it be? The process started six years ago. Come on. There were people who sat in that room with me that day who are not here any more. Those heart failure patients have since passed away. Are the needs we discussed that day going to be met by this review? It is too old and it is out of date. I would question that review.

Neasa Hourigan (Dublin Central, Green Party)
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Ms O'Shea is a very good advocate for her group. I know I am out of time but I will just propose that we write to the CMO and the HSE. There absolutely should be a patient advocate or representative involved in any programme like this. It touches on a great many people's lives and it is completely unacceptable that this has been the case for three years.

Seán Crowe (Dublin South West, Sinn Fein)
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As a committee, we should be asking what the delay is in publishing it. I get Ms O'Shea's point regarding some of the information gathered for the review but I assume others are living the same experiences she experienced six years ago. Her disease has moved on but the challenges relating to it are still there. It does not make sense that it still has not been published six years later. I take it that we can make a commitment that one of the actions coming out of today's meeting will be that we will try to find out why it has not been published. The Minister is coming before the committee in the new year on a different subject but we can ask him about that as well. Everyone will be glad to know that we will take a comfort break in ten minutes. After Deputy Gino Kenny's questions, we will take a short break.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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I thank everybody for their statements. With regard to the opening statement of the IHF, there are 9,000 CVD deaths per year. How does that figure break down by gender? I am sorry; I am probably putting Mr. Macey on the spot.

Mr. Chris Macey:

I do not have that figure off the top of my head. With stroke, the number of deaths among women is much higher than among men. It can be something like 25% to 30% higher, which is, to some extent, down to women having greater longevity than men. With regard to heart disease, I am not quite sure what the current statistics are.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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I will come back to that. Social determinants play a very significant role in the overall health of a person. Poverty, access to healthcare, working conditions, lifestyle and stress are enormous factors. Taken together, how much of a role do all of these play in a person having a stroke or developing a cardiovascular disease?

Mr. Chris Macey:

The rate of deaths from CVD in the lower socioeconomic areas is two to three times higher than the rate in the highest. Things like air pollution, which is more prevalent in inner cities, have a much greater effect in areas of socioeconomic disadvantage than in the more salubrious areas where people might live. Likewise, smoking rates are higher and, when looking at what is sold in different supermarkets and where fast food outlets are located, it can be seen that unhealthy food and drinks tend to be more prevalent in disadvantaged areas.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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So, it is a very significant factor.

Mr. Chris Macey:

It is an absolutely massive factor.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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I would think it is probably the biggest factor.

Mr. Chris Macey:

Absolutely. For example, the last time I looked at smoking rates, I saw that 50% of women in the Traveller community were smokers. That might have changed a bit since as that is going back a few years but one in four women in Traveller community were dying from the effects of smoking. That is the level we are talking about.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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In the past decade, smoking rates have decreased dramatically. That is obviously a factor in respect of cardiovascular disease. Has that increase in the percentage refraining from smoking been reflected in the figures?

Mr. Chris Macey:

Outcomes tend to take a generation to wash through. For example, there is a higher rate of lung cancer deaths among women than there was previously because more women started smoking a generation ago. With regard to where we are with smoking, the smoking rate among children is starting to rise for the first time in a generation. We can be reasonably confident in saying that we are looking at potentially losing those hard-won gains as a result of the explosion in vaping. Since 1997, the smoking rate among teenagers fell from 41% to 13% but is now back up to 14.4%. If you look at where this is happening, you will see it is happening more in disadvantaged areas than in advantaged areas. There is no doubt about that.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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How will Croí's new mobile health infrastructure be rolled out?

Mr. Mark O'Donnell:

I thank the Deputy for the question. This is part of a larger project we are implementing over a period of approximately 18 months, thanks to a very generous legacy donation we received in the past 12 months. We are sourcing two mobile units. One is a large articulated truck-sized unit, which is being custom built. It is a bespoke unit the size of an articulated trailer, which can then extend mechanically to double that footprint. When the vehicle pulls up a community event or other public event, it will have space for up to eight screening bays, in which we can provide rapid health checks for free to the public at these events. The interior of the unit is modular so it can also be used for education and awareness events. It can be set up in the style of a theatre for a larger group. It is very flexible infrastructure. On the commissioning time for the unit, we expect it to be operational in the third quarter of next year. We are working on a roll-out plan to get it out into communities across the country because it will be a significant tool in allowing us to meet people where they are. We already do a lot of work in the community as regards screenings and health checks at public events, gatherings, community days, marts, sports events and so on. This will extend our reach in that space.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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If that vehicle was outside in the car park now and one of us wanted to go into it, what would happen?

Mr. Mark O'Donnell:

We typically offer a range of checks at our public health events. A blood pressure check is always part of it because hypertension is one of the leading causes of heart disease and stroke and one of the major risk factors. We typically also do a pulse check as anomalies can be a marker for atrial fibrillation. It is a basic enough check. People get a consultation with one of our community health nurses. At the moment, we are looking at fitting it out with some more sophisticated equipment, such as an echocardiography machine, which would allow us to do echocardiograms within the community. However, resources and a specialist skill set are needed to provide that service. That has not been fully scoped out yet. In addition to that larger unit, we also have a smaller van-sized unit that has two screening bays. We are going to use that for more rural areas and communities that may be geographically harder to reach.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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Do these vehicles exist already in the HSE? Are there any such vehicles?

Mr. Mark O'Donnell:

Not that I am aware of. There are some smaller mobile health units in operation. I do not have exact details of that. For the larger one, however, I am not aware of any of its kind in the cardiovascular space in the country.

Mr. Chris Macey:

We have been running a mobile health unit for ten years around the country. We have been going into disadvantaged areas and farmers' marts and that type of thing.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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That is a great idea. Has Mr. Macey found that very useful?

Mr. Chris Macey:

Yes. It has turned up a huge level of undetected cardiovascular issues all right.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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I saw an advertisement a number of years ago when the NHS in Britain did checks in supermarkets, which are places many people frequent, and carried out a certain amount of screening and detection. Obviously, men in particular try to stay away from the doctor as much as possible. Getting into locations where men cannot shy away from being screened is very important as well.

Mr. Chris Macey:

We have carried them out at a number of Ard-Fheiseanna for different parties. It affects politicians as well as men, you could say. We turned up a lot of people who had to go directly to hospital after being checked.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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What could be detected in that mobile unit?

Mr. Chris Macey:

High blood pressure, cholesterol, atrial fibrillation and those kinds of things.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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What would happen then? What would be the next step?

Mr. Chris Macey:

Do not pass go; people go straight to hospital and get the medical help they need.

Mr. Mark O'Donnell:

I will come back on that point and give an example we had recently. The Deputy mentioned the shopping centre environment. We held a series of health checks across four locations for heart valve disease last September as part of world heart month. We had them in counties Galway, Limerick, Dublin and Castlebar in Mayo. Approximately 1,200 or 1,300 people were seen across the four days. We had stethoscope checks to check for heart valve disease, blood pressure checks and pulse checks. Of the 1,300 people we saw over those four days, 10% were actually referred back to their GPs or referred on for further treatment. It just shows the incidence of disease in the community and the impact that sort of opportunistic screening can have. We can go out and meet and be there for people where they are rather than expecting them to go and make and appointment to get checked.

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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That is very important. I thank the witnesses very much.

Seán Crowe (Dublin South West, Sinn Fein)
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Before we take a break, Mr. Macey mentioned the Ard-Fheiseanna. Is there anything he wants to share with regard to the heart rates at some Ard-Fheiseanna?

Gino Kenny (Dublin Mid West, People Before Profit Alliance)
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Do they have hearts?

Seán Crowe (Dublin South West, Sinn Fein)
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Are particular parties more relaxed than others?

Mr. Chris Macey:

It was pretty similar across the divide.

Seán Crowe (Dublin South West, Sinn Fein)
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I thank Mr. Macey very much. We will take a break and suspend the meeting for ten minutes.

Martin Conway (Fine Gael)
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This meeting has been a very interesting engagement and I thank the witnesses for their contributions. In his opening statement, Mr. Macey stated there was a need for a national strategy. How should that national strategy be framed?

Ms Kathryn Reilly:

Very simply, it needs to look at cardiovascular disease right across the continuum, from primary prevention, secondary prevention, primary care, acute services, rehabilitation, community services, life after a heart attack or stroke, to palliative care, which also needs to be an important part of that. It needs to be right across the spectrum and have patient involvement in its development from the beginning because the best insight we can have on how the services are working and what services are needed will come from patient experience.

Martin Conway (Fine Gael)
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Where does the foundation draw its statistics from?

Mr. Chris Macey:

Different sources but-----

Martin Conway (Fine Gael)
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There is not a national database, however. Is that correct?

Mr. Chris Macey:

There is a national stroke audit, which is how we know 6,000 stroke cases go into hospital every year, for example. There is also a heart attack audit, but there is no register in respect of, for example, heart failure, as we have said. Some of it is estimates from experts and some of it is from research we have carried out ourselves, as well as international studies, extrapolations of that and so on.

Martin Conway (Fine Gael)
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Deputies Shortall and Cullinane asked the other questions I had intended to ask, so they have been answered. I thank the witnesses.

Colm Burke (Cork North Central, Fine Gael)
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I thank the witnesses for their presentation. One problem I have is that some progress has been made but it has not been highlighted enough over the past ten or 15 years. For instance, Mr. Macey talked about a shortage of staff, but an additional 43,000 people have been taken on by the HSE in the past seven years. Is he saying that none of them are dealing with cardiac or stroke?

Mr. Chris Macey:

No. Again taking the example of stroke, there has been a huge reduction in death from stroke in the past ten or 12 years, I think, of the order of about 25%. There has also been a large reduction in the numbers who need long-term care. The point I am trying to make is that there is still a lot of-----

Colm Burke (Cork North Central, Fine Gael)
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I accept that, but this meeting was suspended at 11 o'clock. If I were someone who had just had a stroke, I would have been leaving here very depressed because there was no emphasis at all on the progress that has been made. I accept what Mr. Macey is saying about the need to employ more people and I accept the need to make more progress on this, but it is important we also give the positive side of the progress that has been made, especially on stroke, and to how we can reduce the level of challenges that anyone who has had a stroke faces, which I fully accept. It is important to also highlight the progress that has been made.

Mr. Chris Macey:

That is fair enough. In the limited time we had to answer questions or deliver a statement, we tried to get our main points across, but the Deputy makes a fair point. Nevertheless, one area where we have not improved is that, while we are saving more lives and more and more people are surviving their stroke and returning to the community, we have not really done anything about post discharge and life-after-stroke services and supports, as I set out in my opening statement.

Colm Burke (Cork North Central, Fine Gael)
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I accept what Mr. Macey is saying about post discharge, but there are two areas we need to focus on. One is that area, but the other is the preventative side and not enough is being done on that. If he were put in charge tomorrow morning, what is the first policy he would go about implementing as regards the preventative side? What is the one measure we need to prioritise and whose roll-out we need to fast-track?

Mr. Chris Macey:

In the document we produced on primary prevention, diet is the single biggest factor in preventable chronic disease. It is about looking at what we can do about that and what we can do about smoking, obviously, as well. As I said, we very much welcome the consultation on vaping and smoking that has been called by the Department and the Minister, but we need the action to be a lot quicker than it has been. We have not been acting quickly enough in that area. In terms of diet generally, there could be measures such as mandatory programmes on salt reduction. The Commission on Taxation and Welfare has proposed a tax on ultra-processed food.

Some 46% of the Irish shopping basket is ultra-processed food. That is having a substantial impact on health and it will accelerate in the years ahead unless we do something about it.

Colm Burke (Cork North Central, Fine Gael)
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The survey identified that 25% of people were not aware they had blood pressure problems. How is that 25% made up? Did it highlight any particular group or any particular age group?

Mr. Mark O'Donnell:

That survey was a targeted campaign we ran in Mayo. I think the age cohort was 45-plus for most of the participants. It was run through a pharmacy, so it was kind of an opportunistic screening and people went in of their own accord to get checked. The interesting thing is that what clinicians will often describe as the rule of halves is very much borne out. Half of the people checked as part of that process had elevated blood pressure on the day of the check, and of that 50% who had high blood pressure, half of those were completely unaware of it. That is concerning, given the impact of hypertension as a risk factor.

There is an important point to be made on the previous question about prevention. We focus much on and talk about prevention, risk-factor management, risk-factor modification and things such as that – this is very much in line with the Heart Foundation’s recent paper on prevention – but there is a need to go back much further than that in terms of the long-term piece that we are not doing. When we do public policy planning outside of the strict confines of health, we tend not to use a health lens when developing policy, which is a huge failing. In my opening statement, I mentioned integrating health considerations into things like spatial planning and land use planning. How we plan, build and structure our communities is not included in any consideration at the moment and that is a massive gap. Particularly, looking into the long term, we will never be able to get ahead of the problem and be reactive. We will be stuck in conversations about headcount, posts and all the rest of it unless we get out in front of the problem and take much broader policy actions with regard to integrating that health lens into public policy.

Colm Burke (Cork North Central, Fine Gael)
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The survey was done in one area. Is it possible over a three-week time period in the year to roll out that kind of analysis right across the country? It would send a clear message to people and give people an opportunity. It would have to be done over a three- or four-week time period. Is it possible to do something like that?

Mr. Mark O'Donnell:

I think it would be. On that type of screening and some of the other checks we do as part of community health checks, these are simple diagnostic tools, and that is one of the great things about it. There is no expensive equipment required or lengthy process. They can be done on the spot and are simple checks. It would be absolutely fantastic to roll out standard blood pressure checks for people over the age of 45. There are also other ways to do it. We do many of our health checks in partnership with other organisations such as pharmacists, where people can go into their pharmacies and do not have to go the GP to get the check.

One of the other initiatives we had that worked well is a partnership with Mayo library service to have blood pressure monitors available for lending from public libraries. Somebody can go in and borrow a blood pressure monitor for a week and check their blood pressure over a number of days. That project is at a small scale, with three library branches participating. There are 330 library branches across the country.

Those sort of initiatives, where we take community healthcare and put it in public and community settings, is where we will get much benefit.

Ms Kathryn Reilly:

The data we have currently on hypertension – that cascade – is more than ten years old. The data we have on levels of hypertension awareness, control and management is more than years old and came from The Irish Longitudinal Study on Ageing, TILDA. We need to update it, particularly given the role of hypertension and high blood pressure in cardiovascular disease. The importance of that came out in our prevention paper. Whether it is looking at the tools we have in terms of Healthy Ireland or a broader study the Department Health would undertake, data is key. While we have some of that date because the likes of the Irish Heart Foundation and Croí do blood pressure checks in terms of mobile health units and those studies, having a national data level is important. We would need something like TILDA replicated but not just looking at the older populations but looking at the younger populations as well.

Colm Burke (Cork North Central, Fine Gael)
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The amount of information identified in a short timeframe and the fact that 25% were not aware they had a blood pressure problem sets off alarm bells. If the witnesses could roll this out at a national level over a period of time, probably using both libraries and pharmacies, they would probably assist an awful lot in reducing the level of strokes.

Mr. Chris Macey:

That is a very good point. The figure we are working off is that two thirds of over-50s in Ireland have high blood pressure and only half of them are aware of it. I heard a few doctors and consultants say, for example, you have to get your car MOTed every two years but you do not have to get an MOT on a human being. Just a simple blood pressure test across the population would have a massive effect.

Colm Burke (Cork North Central, Fine Gael)
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I raise the issue of the number of people employed and the 70 or 75 posts that are not filled. What are those posts? Are they key posts in particular areas?

Mr. Chris Macey:

I do not have a breakdown of what they are. All I know is that it is a mix of all of the expertise that goes into delivering stroke unit care. It is consultants, nurses, physios, speech and language therapists, occupational therapists, psychologists and so on. In all of those areas, when looking at minimum international standards for a stroke unit, we are operating below the minimum standards in quite a lot of cases in many hospitals.

Colm Burke (Cork North Central, Fine Gael)
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Another issue is arising in hospitals. I refer to the fact there is now a 40% increase in staffing levels in hospitals. We heard from the Secretary General of the Department of Health recently that although there was, I think, a 36% increase in staff in hospitals, there is not an equivalent increase in patient numbers going through; it has only gone up by about between 10% to 20%, varying from hospital to hospital. Therefore, there is a need for infrastructure as well as employing people. What are the key areas where the infrastructure is not in place?

Mr. Chris Macey:

For example, St. James’s Hospital lost its dedicated space for its stroke unit during Covid. It has a much smaller space now that is not sufficient to operate a service, along with various deficiencies in the expertise required as well. When you talk about stroke units, you are essentially talking about the expertise and some space to deliver that in a concerted way.

Colm Burke (Cork North Central, Fine Gael)
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Does Mr. Macey see that problem being resolved? Obviously, with a smaller space, they are not able to deliver the service.

Mr. Chris Macey:

Hopefully, but many of these things come down to individual hospitals and so on.

Seán Crowe (Dublin South West, Sinn Fein)
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Before we go on, I understand that during Covid certain sections may have been closed down. However, the fact that they have not reopened or are smaller-----

Mr. Chris Macey:

In my understanding that in this case, the ICU took the space and has retained it since to be able to deliver a larger ICU operation.

John Lahart (Dublin South West, Fianna Fail)
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I thank the witnesses for their statements. A year ago, I had heart surgery, so I am looking back on that now and the interventions that have taken place since. I am interested in some of the points made. Mr. Macey made the point that you are required to have your car NCTed. Why do my health insurers not require me to have my blood pressure checked and have an annual check-up? Not doing that is costing them a lot of money. That is something I will chase up. For those who do not have private insurance, there is public, PRSI and that kind of thing. It seems to be reasonable, given that we do it for cars. Is there some reason a health insurer cannot oblige a person to have a health check? I suppose the fear would be that insurers would stop covering a person but actually the whole reason is that cover would be better provided - that is the way I would see it.

One word I want to mention is "fear". You learn many lessons when you have an experience than many people have about their heart. When you talk to other men in particular, a look of fear comes over their faces. I have reduced my advice to one sentence, which is that the doctor is your friend. That fear, particularly when you are talking about blood pressure, is the fear of what you might find out. There is a piece of work to be done there. Most of the things you find out are very manageable and treatable. Science and medicine have developed great strategies to cope with them. There is a fear of the Armageddon diagnosis. Regarding the fear of going to the doctor, it is so counter-intuitive in one sense but it is where we could do a piece of work.

I will raise the timebound commitment from the Minister about a strategy. When do the witnesses think that the outreach and education around cardio-vascular issues ought to begin? I am always interested in geographical data. Is there any data available that indicates that cardio-vascular disease or blood pressure is location-rich? Have we any data on that? I have become very conscious of sugar content when I walk into a shop. If it is low in fat, you can be guaranteed that it is high in sugar and if it is low in sugar, you can be guaranteed that it is high in fat. The sugar piece is just getting worse. How parents cope with it even on the cereal aisle is beyond me. I have never seen so much chocolate in cereal offerings. It is just standardised. It is really crazy and the State is considered to be a nanny state if it gets too involved. What we do not talk about is the cost to you of us not getting involved and not trying to intervene is pretty astronomical.

Ms Esther O'Shea:

The Deputy mentioned health insurance. Most heart failure patients struggle with even getting travel insurance for holidays. They travel with pre-existing conditions. Sometimes they even struggle to get mortgages because it is a pre-existing health condition. In our patient support groups, we are often asked whether we can recommend a place where someone can get travel insurance or recommend a health insurance company that will ensure someone because that person has such a complex heart issue. There could be further discussion with the insurance companies, however, I think the premium would be loaded if we decided we were all going to get health checks. For those of us living with pre-existing conditions, the insurance market is very narrow. In some cases, people have had to use insurance companies in England to get life insurance cover and mortgages.

To touch on the Armageddon scenario referred to by the Deputy, when we talk about cardio-vascular diseases, it is important to remember that there is a huge variety of cardio-vascular diseases. There are families who have been to Armageddon and survived while others have not. When we talk about cardio-vascular diseases, we must remember that there is a variety of cardio-vascular diseases and they place a significant burden on families who have either lost loved ones or are living with loved ones who are very sick. We need further education and awareness in society about heart health. It is about moving steps and tying it all together. There have been anti-smoking and anti-obesity initiatives, the sugar tax and initiatives to promote walking more often. We should bring them all together and roll out a programme in schools starting in primary school on how we keep our hearts healthy. We should start a conversation at a young age and let the children go home and make their own decisions about what they are putting in their lunchboxes because they have been taught it at school. It starts at the grass roots. Once we start talking about preventative measures together as opposed to them being having anti-smoking or anti-drinking initiatives here and there, there will be an opportunity for us to have a lifestyle approach to managing heart health.

Mr. Chris Macey:

Regarding the Deputy's comments about sugar and education, what we found and what the research says is that it is the ubiquity, marketing and the relative cheapness of unhealthy food that have caused the explosion in the national waistline. We do not yet have an evaluation of our sugar-sweetened drink tax. It is still being done five or nearly six years on. An almost identical tax was introduced in the UK and it was shown within a year that it had had a significant impact and taken something like 35% of the sugar content of those beverages out of the system generally because it incentivised producers to reduce the amount of sugar in their drinks and, therefore, taste-changed people starting drinking those. Because they reduced the sugar, they did not lose any business. Sales went up by 10% but the sugar went out of it. Those sort of approaches are the type of approaches governments need to look at. Regarding reformulating over time, salt is a great example. In the UK, they were doing this up to 2010 and then a new government came in and stopped it. They were gradually reducing the amount of sugar in products and it was having a really big impact in reducing cardio-vascular disease and cardio-vascular deaths. These are things we have to look at. We can help people enormously by doing that. If people say that protecting your citizens is a nanny state, that is up to them but it is something governments and policy makers have to start taking on.

John Lahart (Dublin South West, Fianna Fail)
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One of the greatest things that has happened to me is cardio rehab. I would have undergone cardio rehab after being under the care of the HSE. It is contracted out to ExWell. I do that. We share a constituency in Thomas Davis GAA Club. It is there on Wednesday and Friday. I think there are four classes. There is a man doing it with me who is 93. It is post-event so it is after a medical or surgical event and I get that but there are hundreds of people doing it. This was not happening before. It is very much part of my recovery, none of which I take for granted because nobody knows what will happen. There is a space for pre-emptive work and I think we could get there. This part of it, which is twice a week for 12 weeks, is contracted by the HSE. If I choose to do the next phase, which I would, it is very cost-efficient. It might be a fiver or something like that. There are people of every age, gender and ability. When I went in, there were people half bent over on the Zimmer frames and I thought "What am I doing here?" but by the end of the first half, I thought "My God, they're amazing." This was giving them independence to reach up to a shelf to take something down or to lift a kettle. I do accept that it is after events but it is happening. It was not happening a few years ago. It is really fantastic. People are doing exercise in parks. I know we need so much more of it but I often think we do not champion it. I know the witnesses are dealing with the end result of us not doing it but fantastic things are happening and we need to expand them. If the HSE was in a position to offer that ExWell piece before anybody was ill so people could come along and get involved, it would be really useful. Some good things are beginning to happen in the space.

Mr. Chris Macey:

There is a new model of care for cardiac rehab, which is excellent and is moving things on. Some investment is going into it. The Deputy made the point earlier that there are positive things happening and there certainly are. The chronic disease management programme is doing a lot of really good work in communities and the development of cardiac rehab in communities as well as in hospitals is part of that.

Bernard Durkan (Kildare North, Fine Gael)
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I should mention at the outset that I am a previous smoker. I do not know if it made much difference or not. It is 25 years since I stopped but I do not know.

The jury is still out. We will see.

Mr. Chris Macey:

I did not do you any good anyway.

Bernard Durkan (Kildare North, Fine Gael)
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We will see. The other issue is examples and warnings and consequent prevention. To what extent can we adapt other well-known marketing principles of attracting attention to a potential disease that might have serious consequences for the public? How do we alert the public, like we did with tuberculosis way back in the fifties, with regard to both cardiovascular heart disease and other similar diseases with a view to seriously alerting people to say we have to do something about this?

Mr. Chris Macey:

As for one thing we could do, the Irish Heart Foundation has been running a national blood pressure awareness campaign for the last couple of years. We need the State to get involved in that to do it on a much bigger level. We are a small organisation and we can only do so much on these things. We talked to the Sláintecare office previously. We talked to the HSE about doing this. It is something that really badly needs to be done. High blood pressure is a major risk factor in more than half of all heart disease yet a survey was done of 12 richer countries, including Ireland, in which we came last in terms of awareness, treatment and control of blood pressure in both men and women. Out of 12 countries, we had the second worst level of impact of high blood pressure for men and fourth worst for women. We are doing really badly in this area. If there was just one thing the State could do, this would probably have as much impact as anything else. Doing that would be really important.

We worked with the HSE this year on the Act F.A.S.T. campaign because less than 50% of people who have a stroke are getting into hospital in time to get the life-saving treatment. It is really good that the HSE supported a campaign that we ran together. If these campaigns just last one year, however, they do not have impact. They have to be run over a number of years to really land with people and hardwire that awareness into the national consciousness. We do cardiopulmonary resuscitation, CPR, training in schools for 85% of the secondary schools in Ireland. We are training 200,000 schoolchildren in CPR across Ireland every year. We are progressively hardwiring that awareness of how to save a life into people's consciousness. Therefore, for the first time in terms of out-of-hospital cardiac arrest, there were 200 saves this year in Ireland, which is amazing. What we are seeing now having started this campaign in 2015, for example, is that we are getting examples of teachers and pupils saving lives in schools. That is the type of approach that is required. It is that constant reminder and keeping that awareness to the forefront of people's minds.

Bernard Durkan (Kildare North, Fine Gael)
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How do we get to the stage where we advertise to create an awareness of being overweight, obesity and so forth? We know the drinks sector and sugar, etc., is a serious contributory factor. How do we convince people who are in that category - some might say I am in that category myself but we will struggle on at this stage - and especially young people who may be in that category of where to go and what to do about it that is within their reach? In other words, what do I do about it, when do I do it and when will I see the results?

Dr. Lisa Hynes:

The way to put it is that we need to think about the action piece. Awareness is a vital piece of the puzzle but it is not enough alone. We know from behavioural science that knowing is one thing. We all know what is good for our health, so to speak, but doing is another thing altogether. As the Deputy said, the activation of people through our messaging is so important, but it is a really difficult thing to achieve and kind of an emerging science. One word out there at the moment is the idea of "neuromarketing", which is actually utilising the same types of strategies that really effective marketers are using to activate people but with a public health agenda in mind. Croí is part of a very large EU joint action for health at the moment focusing on cardiovascular disease and diabetes prevention. That messaging and communication piece using these kinds of strategies is a central characteristic and aim of the four-year programme. Campaigns and messaging are a huge core activity in Croí, obviously, as has been outlined by the Irish Heart Foundation. However, it is about how to do this really well. We cannot take it for granted that by providing compelling information, people will be empowered or able to act. The way we do it is, therefore, really important.

Bernard Durkan (Kildare North, Fine Gael)
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I think they will, actually, but it has to be convincing. For instance, somebody said to me one time that I look like a candidate for diabetes. That might be, but I am not: I do not have it. There is no set piece that says one person will be in this category and another will be in that category or whatever. We need to get the attention of people who could be overdoing it in any particular area with a view to them becoming aware of the consequences and doing something about it in a realistic way, and how the health services can reach out to them in an equally realistic way, other than just talking at them.

The other issue I want to point out is stroke aftercare and to what extent it does not occur. It is not there at the moment. What can we do? We will raise it with the Minister and so forth, but is there part of the system that immediately takes over when people are in hospital or with the GP or whatever and through which they are told they are a high-risk factor or are in a high-risk area and this is what they have to do? Do we have that kind of information?

Mr. Chris Macey:

What happens at the moment is that there is a care pathway for stroke that ends when people leave hospital. People are discharged and as I said in my statement, many stroke survivors feel abandoned at the hospital gates because there is no follow-up. There is no plan put in place to manage their recovery except from the likes of what we do with our patient support services. We have created a pathway where we help people make the transition home. We provide them with practical advice and information and support, programmes they might need, counselling if they require it and long-term support that otherwise has not been available to people. We need that to be funded if it is going to continue. We have long waiting lists in our programmes, unfortunately, and there are many more people we could be reaching out to who would benefit from the supports we provide. Really, if we look at any other conditions around, there tend to be at least some funded supports that are available to people. In the heart disease and stroke area, however, that whole area of psychosocial support is not really covered. If we think about it, we have talked a little bit about the psychological impact of heart disease and stroke. We know that only one stroke unit out of five has any clinical psychology. Only four out of something like 31 or 32 heart failure services have any access to clinical psychology. This is something that in very many cases creates a condition that is akin to or is PTSD, afterwards because the impact of that diagnosis on a person's life, which Ms O'Shea can obviously speak to better than me, is huge.

Bernard Durkan (Kildare North, Fine Gael)
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I agree, and that is what I am trying to get at. It is to create that urgent awareness and the necessity to address the issue.

I will move on to something else. I know Ms O'Shea wants to come in as well, but I want to move into other areas. There is an urgent necessity to be more graphic in the extent to which junk food, sugar or saturated foods create a problem, because they do create a problem.

It is not putting anybody out of business or anything like that, but they have to shift their ingredients in a way that is meaningful. It might not be as acceptable to the tastebuds but will have a much more dramatic effect.

Another point concerns spot checks. We used to have spot checks for everybody in Leinster House every couple of years. For some reason, it faded out and it does not happen anymore. It was instrumental in detecting conditions in Members of the Houses and members of staff. Upwards of 1,000 people used to be tested, which was very effective and important. That is one for us to consider.

Mr. Macey mentioned the issue of air pollution. I am a student of air pollution and I used to put down questions about air pollution 25 years ago. That was a time when, if a bus took off from a bus stop, the people waiting at the bus stop would fall around coughing because there was so much pollution. You could see it for a mile and sometimes you could see a haze of smoke over the area from the diesel. That has stopped now so there must have been a dramatic reduction. I know the criteria have changed and what is pollution now would not have come up on the register 25 years ago.

Those of us who live in the countryside find ourselves challenged by being told that we can no longer burn wood in a wood stove. I am doubtful about that and would challenge it. If it is dry wood and people do not burn wet wood, it should not have any effect at all. I would like clarification on that, not for my own reasons but for the sake of everybody who lives in the countryside. There are still a good few people living in the countryside, even though we are a much-maligned group of people.

Mr. Chris Macey:

The vast majority of deaths every year in Ireland, estimated at about 1,300, are down to the burning of fuels in homes generally. I think something like 80% of the deaths are down to that rather than being down to traffic pollution, for example. If someone has a wood stove, a lot of the emissions go out of the chimney and affect other people, but a lot of them stay in the house as well, so it is having a material impact on people who are in the house where the wood, wet or otherwise, is being burned, on those in the houses around that and on the general environment. When there are many houses together, it is very different to an isolated farmhouse. The impact it is having is huge and it is not just in the cities as there are towns that are bearing a big brunt of this as well.

It is a problem and an issue that we have to do something about. We need to help people who have used this form of fuel and who might have struggled with energy poverty. It is not just a case of stopping people doing something and not giving them an alternative. Energy poverty costs lives as well and there has to be an even-handed approach.

Bernard Durkan (Kildare North, Fine Gael)
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I was disappointed when I heard the statistics on that because I had spent quite an amount of money changing over from a previous open fire, back-boiler system, to a wood-burning stove. The change in cost downwards was huge but somebody then came up with the unhelpful statistic that Mr. Macey has just given us. I now feel like I am wandering in the wilderness, looking for direction and failing to find it. I am not convinced yet but I may be.

Seán Crowe (Dublin South West, Sinn Fein)
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I suppose the poorer the house, the colder the house, and the nearer to the fire people will move.

Ms Esther O'Shea:

Similar to the Deputy, I am a rural person as well but we will not have that conversation. I want to touch on the care pathways. Today, there are people being discharged from hospitals in Dublin, Cork, Kerry and Mayo. I am a cardiomyopathy patient living with heart failure and there are stroke patients, stroke survivors and people after myocardial infarctions, MIs, who have nowhere to go. They have no pathway and no care plan when they come out of hospital. They are lost, alone and vulnerable. The HSE's promise is to protect those in society who are ill and vulnerable. We tick all those boxes but such people are going home to their families. I was very fortunate that I had a husband and a wonderful family from both his side and my side who supported me, but people who are newly diagnosed and living with a chronic illness are afraid to go to sleep at night because they are afraid they will not wake up in the morning. They have chest pains and palpitations, but they are sent home with medication. There is no care pathway on discharge.

I had a hospital appointment yesterday. They are fantastic in CUH in Cork, which is where I go, but even they will say there are no supports. When someone is discharged, they go home to their family. Some are going home to an empty house and they do not have wood to burn, perhaps, as the Chairperson was saying. Those in houses that are poor have no one knocking on their door, no one making them dinner and no one helping them to go up and down the stairs because they are too breathless. There is no one setting up a bed downstairs because they are physically not able to get up the stairs. There is no public health nurse coming in to check on them. There have to be better care pathways for people on discharge for all cardiovascular diseases.

To touch on another topic, we talk about psychological supports. Thankfully, Croí and the Irish Heart Foundation have recognised that psychological supports go beyond the patient. They have to support those who are carers and who are caring for people with serious heart diseases or stroke survivors. The psychological supports have to extend to the wider family and that needs to be further resourced and built upon.

Seán Crowe (Dublin South West, Sinn Fein)
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I wish to raise a few points. We all know someone impacted by this and someone who has had a heart attack or a stroke. We all know someone who has died from a heart attack or from coronary disease, and we all know someone who is living with it at the moment. The statistics are that this involves 9,000 deaths every year, which is 30% of the mortality rate. What I cannot get my head around is that we have those figures - I have said that we all know someone who has been affected and a committee member has been talking about his experience - yet we do not have a plan in place. It just does not add up.

A review was started six years ago and it still has not been published. I am asking the witnesses but they are not the ones who should be answering this question, and it should be the Minister or the Department. Again, we give a commitment, as a committee, that we will certainly follow up on this.

Do the witnesses have any insights as to why we are at this stage? Why is it the poor man's or poor woman's disease? Why are people being left behind in this situation?

Mr. Chris Macey:

I think strategies are often a means to an end in terms of kicking a can down the road. If it is decided to have a strategy, that will take a few years, it will not be published for a bit after that, there will be another wait before there is any implementation plan, and then there will be another wait again. I think it is often used as a tactic not to do things, which is very unfortunate. The term “implementation deficit disorder” was coined a few years ago and it is something that is, unfortunately, a problem.

With regard to why heart disease and stroke are so poorly prioritised compared to other things, I tend to think that it is partly because a high proportion of the people affected are older people. That is part of it, unfortunately, and I think it is another area where, as a society, we need to be better.

Seán Crowe (Dublin South West, Sinn Fein)
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On Sunday morning, I was talking to a referee who was at a local match when a young man from my area collapsed with heart failure despite having had no history of that. The referee was a firefighter, so he did CPR, and the guy is walking around now.

We increasingly hear these stories. There was no defibrillator nearby. There may have been one near the clubhouse but many of the pitches are far away from there. By the grace of God, there was someone there to save that young man's life. Ms O'Shea was saying she did not smoke and ticked all the boxes in respect of a healthy lifestyle. We are hearing of really fit people collapsing and so on. Do the witnesses have any insight into why this is happening? Is it genetic? There was reference to the tests. It is normally the case that a doctor will take a person's blood pressure and so on every two or three visits. Do we need doctors to be carrying out an overall package of tests? That is what some people were suggesting. It may be the case that is not being done in the case of people who are relying on the public system. We need that system in place.

People are asking why are we hearing about this more. The witnesses outlined clearly that obesity is the big challenge of our times. Some members touched on factors such as alcohol, smoking, fast food and a sedentary lifestyle. Who would not look forward to lying on a sunbed reading a book or whatever at this time of year? Those things are all enjoyable in their own right but they can lead to trouble down the road. Unfortunately, it is down to messaging, marketing and so on. As a State, we overly rely on the likes of the witnesses' organisations in that regard. The message is important. The point was made that one-off yearly campaigns do not really last. We need to get the message across in respect of how impactful it is. If we can link it to people's lives and what is happening to the people they love, they will realise that what they are being told in respect of changing their lifestyle and doing things differently or the same thing will happen to them makes sense.

Ms Kathryn Reilly:

I would like to make a point regarding campaigns and so on. It is something we talk about in terms of primary prevention. I know the committee will touch on this next year when it discusses the commercial determinants of health. We need to move away from that lazy language of lifestyle, where it is an individual response - it is down to the person and ill health is just down to what the person has done and an accumulation of his or her experience in life. We need to move to population-based responses, going back to the society in which we live and the things Mr. O'Donnell touched on in terms of planning and looking at things through a health lens. Many matters relating to ill health and cardiovascular disease lie outside the Department of Health. These include food marketing to children, as well as tobacco, vaping and alcohol, how these things are marketed and the environments in which we live. It is important to have sustained campaigns to remind people about healthy eating and so on, but we also need to look at population-based approaches and commercial, social and economic determinants of health. They are important.

I flag to the committee that the Healthy Ireland framework will expire in 2025. It is a cross-governmental and cross-departmental response looking at keeping Ireland healthy. It considers those population health responses. Given that it will expire in 2025, what will the Government do next? Is it getting ready for a new plan? Such a plan would need to consider the commercial, social and economic determinants of health and how we address that. It should not put it all on individual responsibility. That approach fails. The population-based approaches have been shown to work. They are more cost-effective and better at saving lives. This is addressed in the briefing paper we sent to the committee. That needs to be considered as well. It is how we will comprehensively tackle CVD into the future, particularly with ageing populations with more than one chronic illness.

Mr. Mark O'Donnell:

It goes back to the Cathaoirleach's original question regarding why we do not have a plan or strategy. I am not sure of the answer to that specific question but I very much agree with the point made by Mr. Macey that there is a tendency to generate strategies but then there is a gap in implementation. The implementation happens and there may or may not be a review process thereafter. We need to treat that whole life cycle as one process. The strategy should be prepared with input from all stakeholders and include a clear implementation plan. Rather than an implementation plan following on some time down the road, it should be part of the same process. It is important to have ongoing monitoring and evaluation throughout the life cycle such that by the end of one strategy period, there should be substantive input into the next strategy from the experience of the first. We are not tightening up that cycle enough in terms of the actual implementation, resourcing and delivery and the ongoing review. For the national stroke strategy and any new national cardiovascular health strategy, there has to be an end-to-end closed-loop process that we work through.

Seán Crowe (Dublin South West, Sinn Fein)
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I was struck by the observation that patients tend to be forgotten about - out of sight, out of mind - once they are discharged. Ms O'Shea referred to the quality of how a person survives thereafter being dependent on support. That is the big gap - the lack of community care and follow-up. Whatever about the challenges in the hospital system, the huge challenge is the lack of community supports in that regard.

Mr. Chris Macey:

Significant expertise is going into saving people's lives but, time and again, recoveries are being squandered because there is not enough emphasis on that aspect.

Seán Crowe (Dublin South West, Sinn Fein)
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There was reference to cancer units and the fact that there is no equivalent unit for cardiovascular disease. What difference would that make?

Mr. Chris Macey:

Is the Cathaoirleach asking what difference having a cardiovascular unit within the Department of Health would make?

Seán Crowe (Dublin South West, Sinn Fein)
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Yes.

Mr. Chris Macey:

There would be more thought, planning and expertise going into it. There would be more strategy. We are devoid of strategy, as we have discussed, and such a unit would change that. If there was a unit there solely focused on improving cardiovascular health services, we would have a platform for improvement.

Seán Crowe (Dublin South West, Sinn Fein)
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It would be the driver for change.

Mr. Chris Macey:

Exactly.

Seán Crowe (Dublin South West, Sinn Fein)
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One of the witnesses asked who should be contacted in that regard.

Mr. Chris Macey:

Yes. The will has to go with it, however. There has to be political will behind it as well.

Seán Crowe (Dublin South West, Sinn Fein)
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We have not discussed cholesterol. A number of years ago, it was all about the problems with cholesterol, but there has been no discussion on that this morning. Is cholesterol still an issue?

Mr. Chris Macey:

It is absolutely huge, yes. We just did not get onto it. It is part of the checks we do. Having good and bad cholesterol levels right is crucial to good health.

Seán Crowe (Dublin South West, Sinn Fein)
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Haemochromatosis affects Irish people throughout the world. It is another heart-related condition, one of those issues on the checklist in that regard.

Dr. Lisa Hynes:

We are increasingly seeing and appreciating the number of conditions that are cardiovascular in nature or linked to the cardiovascular system. There is far more discussion now on the relationship with liver and kidney health and disorders. There is more emphasis on the importance of the cardiometabolic system. The health system is starting to reflect that, such as through the new enhanced community care hubs. There is really good stuff happening there from a prevention perspective. There is significant potential for a community-based perspective driven through those models. Informing the public about that is a huge part of it. There is a need to help people understand the connections between the systems of the body and how much benefit there in us, both individually and at a population level as a society, prioritising our cardiovascular health. Whether it is in the context of cancer or any of these other conditions, the cardiovascular health piece is fundamental.

Seán Crowe (Dublin South West, Sinn Fein)
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Ms O'Shea and others were saying patients are normally told there is a likelihood of depression after a heart failure or whatever else. It is the same with any serious disease. What happens after that? The patient is told this could happen, but are there supports in that area?

Ms Esther O'Shea:

There are no such supports. Once a person gets home, he or she depends on his or her family and the support of the community.

When I talk about community I am talking about neighbours and friends. It is a huge burden. They are already trying to manage a very sick person in their house and trying to adapt to a new way of living because of that person's illness, yet the burden on them is significant; it is insurmountable really. It is too much. If a person got a discharge plans saying next week you are going to meet a counsellor, the week after there is going to be a nutrition programme and then someone who will talk to you, then a follow up in six weeks with your counsellor and then we will bring you in for a group session. That is part of cardiac rehabilitation, but cardiac rehabilitation is tied to hospitals. It was great to hear the Deputy mention the ExWell programme. Excellent, that is fantastic, I would love if that was rolled out all over Ireland. However, cardiac rehabilitation is linked to the hospitals. Some hospitals do it better than others and there is definitely scope for improvement. Again, not every condition fits the standardised cardiac rehabilitation model. Some hospitals are better at adapting that model to suit to that cohort of patients.

Cardiac rehabilitation can expand into the community. There are different levels of cardiac rehab to encourage movement, to encourage weight watching and there is a social element. There is something to be said for being with other patients who are reminded every day of their illness and of what they cannot do as opposed to what they can do. They might not be able to do it like they used to do it; it is a new normal but they will have a go of it. When there are bad days, there is somewhere they can reach out to. We also cannot undermine the financial burden that is placed on people who are paying for medicines who do not have medical cards or GP visit cards. It is another stressor. It all adds up. We see in any chronic illness, as the Cathaoirleach rightly said, comes anxiety, stress and worry. That disables people's coping skills and coping mechanisms and it also affects their health. They could be taking the medication and the tablets to help them but if their emotional and mental well-being is suffering because of this illness, the two do not work well together. It is about the next step of the journey. Recently I was with a heart failure group and we all had different heart diseases, cardiopathy and congenital heart defects. I said we are all on the same train journey we are just in different carriages. We all have the same struggles financially, psychologically, lack of support in the community and struggling to get into the hospitals. We are all on the same journey, different characters because of our condition but we are all in the same class. I will not say what class we are in. We are getting momentum here today and a great opportunity, we just need to get traction now.

Seán Crowe (Dublin South West, Sinn Fein)
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I get the idea, talking about the idea of a support group. In my area in Tallaght there is a cancer support group and again it is not for everyone but it is great to have it there if you feel a need. It is held in a GAA club and easy to find.

Mr. Chris Macey:

We have a stroke support group in the Red Rua arts centre in Tallaght.

Seán Crowe (Dublin South West, Sinn Fein)
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Again, there is help available. My final question is on the echo test and how it could be six or nine months. Is that down to geographical location? Unfortunately, people talk about going to the GP but we know from the Joint Committee on Health that it is quite challenging depending on what part of Ireland a person lives to get basic access to a GP or to a dentist. This can be difficult. Unfortunately, much of it is down to geographic location. Is it the same with the echocardiogram?

Mr. Mark O'Donnell:

The report I mentioned earlier, which I do not have to hand now, has a breakdown by location. There was a fairly significant variance. The average was six-months in the public system for that. I will be happy to send that on to provide more information.

Seán Crowe (Dublin South West, Sinn Fein)
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With regard to availability in libraries and testing, it makes sense. I presume there is a cost factor. What would that would cost if it was rolled out throughout libraries in the State? It does not have to be in every library but if people knew it was in a certain area, they could access the machines to check their blood pressure. They are simple things but they put people on the right track.

Dr. Lisa Hynes:

It is a minimal cost. An accredited machine can be around the €30 mark. We started in Castlebar library and had four or five monitors in there initially. The feedback after the first six months was such that they were loaned out 72 times. That was interesting. We had no idea what the interest or uptake would be. We have a lot more to learn on why people are engaging, what they are doing with it and how best to feed into the whole system in terms of what people then do with that information. How do we support people to act on it? That kind of thing is empowering for people and could be very low cost.

Seán Crowe (Dublin South West, Sinn Fein)
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Is there anything else? A number of asks were made of the committee this morning. We will certainly follow up and let us keep this conversation going. We will certainly follow up with the Minister. He is coming in on a different issue but we can certainly follow up with his officials on the strategy itself, which makes sense. The fact that we have gone over the figures, the number of people it impacts and made the point that everyone knows someone so it is something that we collectively have to address if we are serious about health at all.

Mr. Chris Macey:

I thank the committee for taking an interest in the issues we raised and for the time given to us. It has been very generous.

Seán Crowe (Dublin South West, Sinn Fein)
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It would have been ideal to have departmental officials in as well but that could not be done.

Mr. Chris Macey:

It is the time of year, I believe.

Seán Crowe (Dublin South West, Sinn Fein)
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It is not an issue that we are going to forget.

Mr. Mark O'Donnell:

I also want to say thanks for the invitation. I appreciate the opportunity to come along and discuss the issues today.

Seán Crowe (Dublin South West, Sinn Fein)
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This is the last meeting before the end of session. I thank the representatives of the Irish Heart Foundation and Croí for their engagement with the committee, which we will continue to monitor and follow up on. I thank all the staff for their support, help and commitment during the year, and the same for members. I wish everyone a happy Christmas and happy new year. I look forward to continuing the work of the committee in 2024.