Joint Committee on Health díospóireacht -
Wednesday, 13 Dec 2023

Cardiovascular Health, Stroke and Heart Attack: Discussion

An Cathaoirleach

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.

An Cathaoirleach

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.

An Cathaoirleach

On behalf of the committee, I thank the organisations for the work they do for so many people.

Senator Seán Kyne

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.

Senator Seán Kyne

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.

Senator Seán Kyne

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.

Senator Seán Kyne

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.

Senator Seán Kyne

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.

An Cathaoirleach

Senator Black is next.

Senator Frances Black

I thank members for letting me come in early and thank our witnesses for presenting today. I have a few questions. In his opening statement, Mr. Macey noted that 80% of CVD is preventable, even though it equates to 30% of all mortality. He also mentioned specific factors such as smoking, physical inactivity and excessive alcohol intake. From the witnesses' experience, are certain individuals specifically vulnerable? Are there areas and communities that are adversely affected or in a higher risk category? If there are, what services or supports do the witnesses think could be put in place to address this?

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.

Senator Frances Black

I worked very closely with the Irish Heart Foundation on the Public Health (Alcohol) Bill. We all know that three people die each day from an alcohol-related issue in Ireland. Could the delegates say a little about the relationship between alcohol and heart disease or heart problems, and how alcohol plays a role?

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.

Senator Frances Black

The opening statement highlighted the need for a heart failure registry. Could the Irish Heart Foundation delegates say little about what it would look like and how it would operate? Their briefing note mentioned the expansion of the individual health identifier. Could they say a little about this tool, how it is being used and the impact of both the registry and the identifier on the care and follow-up care of care patients? Might they support planning within the healthcare service?

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.

Senator Frances Black

I thank Ms O'Shea.

Mr. O'Donnell, in his opening statement, noted the overall cost of CVD in 2021 was around €3.44 billion, with productivity losses of €855 million in a single year. To Mr. O'Donnell's knowledge, has a thorough cost–benefit analysis been undertaken? If not, what should it look like?

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.

Senator Frances Black

Do I gave time for one more question?

An Cathaoirleach

Unfortunately not.

Deputy David Cullinane

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.

Deputy David Cullinane

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.

Deputy David Cullinane

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.

Deputy David Cullinane

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.

Deputy David Cullinane

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.

Deputy Róisín Shortall

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.

Deputy Róisín Shortall

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.

Deputy Róisín Shortall

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.

Deputy Róisín Shortall

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.

Deputy Róisín Shortall

Okay, but have they met the Minister on the issue of the review and of the strategy?

Mr. Chris Macey

No.

Deputy Róisín Shortall

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.

Deputy Róisín Shortall

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?".