Charity ‘Virtual Night Run’ attracts almost 2,000 participants!

The 6th Annual Croí Night Run (5km) scheduled for October 9th was yet another in a line of West of Ireland charity fundraising events that had to be ‘re-imagined’ due to Covid-19. Despite having to be changed to a ‘virtual event’, the Night Run which has become one of the charity’s biggest annual fundraising events, exceeded all expectations this year, attracting almost 2,000 participants and raising over €70,000.

Thanks to the event sponsor, Evergreen Healthfoods, 100% of proceeds from this event will go directly to Croí. This year’s media sponsor, iRadio, partnered with Croí in the run up to the event and throughout the day with motivational programming to encourage runners as they took on their 5k.

One of the unexpected benefits of becoming a ‘virtual’ event was that runners and walkers from all over the west of Ireland and indeed from as far away as Perth, Australia and New York USA were able to participate. Just under 2,000 people across towns & villages throughout counties Galway, Mayo, Roscommon, Sligo, Donegal, Clare and Limerick, together with hundreds of people throughout Ireland, UK, Europe, Australia and USA did their own 5km walk or run on Oct 9th or on subsequent nights in support of the fight against heart disease and stroke in the West of Ireland.

“While we were disappointed not to be able to have our annual Night Run on the Salthill Promenade this year, our first priority is to protect those we serve as they are most at risk of COVID-19, so we decided to pivot to a virtual event.   We have been overwhelmed by the show of support from all of those who have joined us in the new format ”says Croí’s Director of Fundraising, Christine Flanagan.

Speaking after the event, Croí CEO Neil Johnson said “the level of support this year has been phenomenal. Despite all the challenges of the pandemic, people has shown enormous generosity and demonstrated huge support for our work. At a time of greatest need, we are hugely grateful to everyone who supported us. The funds raised this year will be used to support our Covid Response Initiatives which include ‘Heartlink West’ – a dedicated phone and on-line support service for those living with or affected by heart disease and stroke. Our multi-disciplinary health team are responding to up to 80 calls per week from across the west of Ireland from those with heart and stroke concerns and worries as a consequence of Covid-19 ”

The Croí Heartlink West support and advice service is available free of charge, Monday to Friday by calling 091-544310.

Christine Flanagan, Director of Fundraising, Croí; Kieran & Aideen Hurley, Owners, Evergreen Healthfoods

Global Alliance on Heart Failure & Healthy Aging Launches Best Practices Report on Heart Failure Detection, Diagnosis, Treatment and Care

The report highlights the importance of better detection and earlier diagnosis, a life-course and multidisciplinary management approach to heart failure (HF), and care-delivery models that are suited to older adults.

Today, the Global Alliance on Heart Failure and Healthy Aging, convened by the Global Coalition on Aging (GCOA), is launching the report “Tackling Heart Failure As We Age: Best Practices in Heart Failure Detection, Diagnosis, Treatment and Care.” The paper demonstrates that heart failure is not a normal part of the aging process but in fact can be more effectively detected and diagnosed to ensure better treatment and management of HF. By offering a clear set of success factors to improve prevention and care for heart failure and highlighting case studies from the United States and Europe, the report aims to reduce the ageism associated with HF and therefore improve the lives of those with and at risk of HF.

Even before the COVID-19 pandemic hit, progress in heart failure care was stalled. Survival after a diagnosis of heart failure has only modestly improved in the 21st century and lags behind other serious conditions” said Michael W. Hodin, PhD, CEO of GCOA. “It’s time to rethink the way our health systems detect, diagnose, treat and care for people with heart failure. A place to start with this re-thinking is how ageism adversely shapes how we approach older people with symptoms that results in delayed or non-diagnosis too often until it’s too late.”

More people die annually from cardiovascular disease than from any other cause. As populations age, urbanization spreads, and the control of infectious and childhood diseases improves, cardiovascular disease (CVD) prominence rises alongside things like high-fat diets, smoking, and sedentary lifestyles. The increase in CVD deaths during the current COVID-19 pandemic, because of the increased risk of contracting COVID-19 or because of the lack of or hesitation to seeking medical care, points to questions about optimal treatment and care.

The report underlines the inadequacies of today’s health systems to deal with heart failure as the population of older adults keeps growing. It identifies four best practice areas to help improve HF diagnosis and care, and therefore the lives of patients living with HF and overall health system costs.

  • Early heart failure detection and diagnosis efforts must be enhanced.
  • Patient must be empowered through a life-course approach to prevention, detection, and management of heart failure.
  • Multidisciplinary care teams led by clinicians with specialized training in cardiology can meet the varied and changing needs of people with heart failure and their families and can help to ensure seamless transitions and closely coordinated treatment efforts.
  • Health systems should embrace innovative care-delivery models suited to older patients.

As heart failure affects at least 26 million people around the world, it is notably one of the few cardiovascular conditions that is increasing in prevalence—the total cost of heart failure is predicted to increase 127% by 2030. Lending urgency to the challenge, the World Heart Federation’s heart failure roadmap estimates that there are 11.7 million cases of undiagnosed heart failure globally.

“Mortality linked to heart failure remains high, with 45-60% of people dying within the five years following a first admission to the hospital. This results in increased costs for healthcare systems, and most importantly in lower quality of life for patients and huge emotional burden for families” highlights Jean-Luc Eiselé, CEO, World Heart Federation and member of the Alliance’s Governing Board.

As the global population over 60 is predicted to double by mid-century, reaching 2 billion, it is more urgent than ever for health systems to rethink their response to heart failure.

To learn more about these key areas for action, you can access the report by clicking here.

To learn more about GCOA’s work to highlight innovative approaches to heart failure diagnosis and care as we age, check GCOA’s cross-sectoral session on heart failure, data, digital solutions and patient empowerment that took place during the World Summit of Information Society (WSIS) Forum 2020. The session was part of the first-ever “information and communication technologies and older persons” track at WSIS.

As Heart Valve Disease Awareness Week Gets Underway, Croí Urges Government to Offer Free Annual Cardiac Check for Over 55s

Survey of 1,000 People Over 60 Years Finds Low Awareness of Heart Valve Disease, its Symptoms & the Need for Stethoscope Checks

The European Heart Health Survey, an international survey of people over 60 years across 11 European countries, has found very low awareness in Ireland of heart valve disease and of certain symptoms requiring medical attention. Heart valve disease is largely a condition of ageing and, when it comes to a simple stethoscope check that can diagnose it, one in five respondents say that they either never have a stethoscope check or only have one when they ask their GP for it.

Croí, the heart and stroke charity, is calling for Government to offer everyone over 55 years a free annual cardiac check to ensure early diagnosis of a range of cardiovascular diseases. The call comes as International Heart Valve Disease Awareness Week gets underway from September 14-20. The week is an initiative of the Global Heart Hub, an international alliance of heart patient organisations from around the world, and is led in Ireland by Croí.

Rising Numbers

Heart valve disease is where one or more of the valves in the heart is diseased or damaged, giving rise to a narrowing of the valve (stenosis) or causing leakage (regurgitation), meaning the heart can’t pump blood effectively.

For too many people, symptoms are either not recognised or ignored and this can have fatal consequences. People perhaps recognise more overt symptoms such as chest pain and irregular heartbeat, but more understated symptoms such as breathlessness and tiredness, can be important red flags as well.

Estimates suggest that 13% of people over 75 years will experience heart valve disease. There are over 2.7 million people across Europe age 65 and over thought to have heart valve disease with this figure set to rise to 20 million Europeans within the next two decades due to changing age demographics.

If severe aortic stenosis is left untreated – the most common form of heart valve disease – 50% of patients will die within two years of developing symptoms. While common and serious, heart valve disease is very treatable.

Survey Highlights

The European Heart Health Survey by Censuswide questioned 1,000 people over 60 years in Ireland and found:

  • Awareness: only 5% of respondents could accurately define aortic stenosis, the most prevalent type of heart valve disease – 95% could not. This compares with 12% in the Netherlands who could accurately define the condition
  • Diagnosis: only a third (32%) claim to receive a stethoscope check that can detect a heart murmur at every GP visit – compared with 76% in France and 57% in Belgium. One in ten (9%) say they never receive a stethoscope check from their GP and a similar number (10%) only when they ask for one
  • Symptoms: while the majority of respondents would seek an appointment with a general practitioner for symptoms such as chest tightness/pain (87%), shortness of breath (68%), abnormal heartbeats (67%) or feeling faint (51%), only a minority would seek medical help if they had some of the other key symptoms of aortic stenosis, such as fatigue (30%), reduced physical activity (21%) and feeling older than your age (18%)
  • Treatment: those surveyed would prefer a keyhole procedure (69%) over open-heart surgery (5%), or daily/weekly drug therapy for the treatment of a heart condition (24%)
  • Economy: respondents are key contributors to the economy, playing an important role as carers with almost a third (28%) providing care for someone close to them
  • Community: more than four fifths (87%) regularly participate in activities, including sports (56%), volunteering for a charity or community (31%), and social activities with their peers (26%)

Benefits are Clear

For Neil Johnson, CEO, Croí, the provision of a free annual cardiac check for the over 55s would have clear health and economic benefits:
“Heart valve disease is predominantly an age-related condition. As we get older, the greater the chances of developing it. Early detection and timely treatment not only reduce the impact of the disease but increase longevity with enhanced quality of life.

“Globally we are living longer and it’s in everyone’s interest that we maintain good health and quality of life for as long as possible. A stethoscope check is an inexpensive means of undertaking early diagnosis for heart valve disease and everyone over 65 years should have one at least once a year.

“This combined with checks for other cardiovascular diseases such as a pulse check for atrial fibrillation, blood tests for heart failure and cholesterol, and blood pressure checks for heart attack and stroke, should form part of a comprehensive annual cardiac check.

“This International Heart Valve Disease Awareness Week, we are calling on Government to provide a national free annual cardiac check for everyone over the age of 55. These are simple, inexpensive and non-invasive tests, and the many benefits of implementing such an initiative are clearly evident.”

For Prof. Dr. Helge Möllmann, Klinik für Innere Medizin I, St.-Johannes-Hospital, Dortmund, and lead author of the survey, it is important that older people know about the disease and the symptoms to look out for:

“The senior population are a group at risk, more so as they grow older, so it is important that they are more aware of the disease and understand the severity of often hidden symptoms to help ensure early diagnosis and timely treatment. It is estimated by the age of 75, the prevalence of heart valve disease is 13%. More work needs to be done to shift the awareness level and that is why this week, Heart Valve Disease Awareness Week, is a key step for improved patient outcomes.”

Full information on the week can be found at

Croí Night Run goes virtual – join our 10-week training plan now!

The much-anticipated 6th Annual Croí Galway Night Run (5km) is back on Friday, October 9, but this year we are going virtual! You can run, walk or jog the 5km anytime throughout the day or on the night on a local route of your choice. The event is once again sponsored by Evergreen Healthfoods, with 100% of proceeds going directly to Croí. This year’s media sponsor is once again iRadio, who are creating an exciting playlist to motivate you on the day of the event.

Why not team up with a group of family, friends or work colleagues and commit now to covering the 5km distance anytime on October 9. Of course, please ensure personal safety and social distancing. If you choose to run at night, please wear reflective clothing and choose a well-lit route.

“Last year, over 1,600 people joined us on the Salthill Prom for the 5th Annual Croí Night Run, raising over €70,000, and we are so grateful for this support. We would love to be back on the Prom this year, but our first priority is to protect those that we serve as they are most at risk of COVID-19, so we are following Government guidelines and going virtual instead. People living with heart disease and stroke need our help now more than ever before, so we ask you to please join us again this year virtually,” says Christine Flanagan, Croí’s Director of Fundraising.

The Croí health team have developed a 10-week training plan to help you get across your finish line – all ages and abilities are welcome to join. The Night Run Training Plan will prepare you for your finishing line by gradually building up your ability week by week. Take on the Croí Night Run and make a positive change to your lifestyle – It has been proven that regular exercise assists with maintaining a healthy weight and lowers your risk of developing heart disease, stroke and diabetes. Engaging in regular, routine exercise will also contribute to positive changes in your mental health and overall well-being.

Registration is now open at €25 for adults or €15 for youths over 12 years of age. Teams are also welcome – for more information, please contact Each participant will receive a goodie bag with a special commemorative Croí Night Run long-sleeve running top to wear on the day. Learn more and register now at

Pictured at the launch of the virtual Croí Night Run, from left: Christine Flanagan, Director of Fundraising, Croí; Aideen Hurley, Evergreen Healthfoods (Sponsor); and Sharron Lynskey, iRadio (Media Partner).

Take a Summer Cycle in aid of Croí and help people living with heart disease and stroke

Pictured at the launch of 'My Summer Cycle for Croí' at Croí House, Galway, from left: Prof. Jim Crowley (Medical Director Croí); Bernard Dempsey (Corrib Oil, Tuam); Alan Connolly (Westside Bikes); and Paul Burke (Corrib Oil Tuam). Photo: Boyd Challenger

Croí, the Heart and Stroke Charity is thrilled to announce ‘My Summer Cycle for Croí’, taking place this August Bank Holiday weekend – your distance, your route, your way!

Join Croí supporters including Jim Crowley, heart specialist  at Galway University Hospital, former Galway hurling star, Ollie Canning, and cycling clubs across the country for a cycle to raise funds in support of those affected by heart disease and stroke. With restrictions easing, we ask that cyclists follow guidelines on social distancing and cycle their favourite local route this August long weekend in aid of Croí.

Prof. Jim Crowley says, “I’ll be taking on ‘My Summer Cycle for Croí’ this August long weekend. It’s a great event to raise much-needed funds for Croí as it supports people living with heart disease and stroke, especially during these difficult times. And it’s great to get out on the bike, bring the family and cycle in support of your own heart health!”

Registration is a €25 donation to Croí, and cyclists are encouraged to try and fundraise at least €1 for every kilometre cycled. All registrants receive a special Croí Summer Cycle neck snood!

“Bring your family, friends or team mates together for Croí’s Summer Cycle – all ages and cycling abilities are welcome to take part and help us raise much-needed funds to support our work in fighting heart disease and stroke,” says Christine Flanagan, Croí’s Director of Fundraising.

Croí is facing an unprecedented challenge – people living with heart disease and stroke are most at risk if affected by COVID-19 and they need Croí’s support services more than ever. Funds raised will directly support the Croí Heartlink West programme, which is a ‘free of charge’ support service for heart and stroke patients and their caregivers, providing direct access to the Croí specialist health team.

“Here at Croí, we rely on our own fundraising activities as we are not state-funded, and with the cancellation of so many of our events this year, we are appealing for support with this event. Last year we celebrated 25 years of the Croí cycle… this year is going to be different, but we ask that you still cycle for Croí – your distance, your route, your way!,” says Flanagan.

So put on your favourite cycling jersey and head off on your favourite route for a Summer Cycle in aid of Croí this August long weekend. You can share pictures of your cycle online by tagging Croí @croiheartstroke.

Learn more about the cycle and register now at

Croí’s Summer Cycle is supported by Corrib Oil, Al Hayes Motors and Challenge Cycling Club.

Heart & Stroke Charity says #JustGo if you are having a Heart Attack or Stroke

Today (Monday June 15th, 2020) the Heart & Stroke Charity Croí, launches a national ‘patient-to-patient’ confidence building campaign aimed at saving lives and reducing disability by encouraging those with symptoms of heart or stroke emergency to seek medical help without delay. The #JustGo initiative reaffirms medical advice to always act quickly when it comes to symptoms of a heart attack or stroke. ‘Time is muscle’ – the longer you wait with a heart attack the more damage occurs to your heart muscle or in the case of a stroke, to your brain.

The campaign is in response to the fear of COVID-19, which is keeping almost half of people suffering from a heart attack away from hospitals, and now across the world, doctors are reporting that those who delay in seeking medical help are in a far worse condition when they finally arrive at hospital, and it’s often too late to benefit from the life-saving treatments that are normally available to them.

“It’s one of the unintended consequences of COVID-19 that people suffering heart attacks and strokes are delaying in seeking medical help, resulting in worse outcomes. Also, people living with known heart conditions who are experiencing new or worsening symptoms are delaying too long before calling their doctor or going to hospital,” says Neil Johnson, CEO, Croí.

National Clinical Societies and international organisations such as the World Heart Federation, World Stroke Organisation and the European Society of Cardiology are all united on the important message that ignoring cardiac symptoms or delaying treatment carries the risk of severe complications with long-term negative and potentially life threatening consequences.

Professor Jim Crowley, Consultant Cardiologist, Galway University Hospital and President of the Irish Cardiac Society, says, “In Ireland, there has been a large decrease in cardiac admissions to hospital (across all cardiac conditions), in some locations a decrease of as much as 80%, and there has been a significant decrease in hospital interventions both surgical and less invasive of up to 35% across hospitals. This is very worrying as we know cardiovascular disease has not gone away and the prospect of a surge of patients with advanced cardiac symptoms in the coming weeks and months as an indirect consequence of COVID-19 is concerning.”

Professor Bill McEvoy, Consultant Cardiologist, Galway University Hospital and Research & Medical Director of the National Institute for Prevention and Cardiovascular Health, confirms that he has been seeing patients who left it too late to come into hospital for treatment of a heart attack or stroke. “We have seen severe complications of heart attacks that we haven’t witnessed in decades, from back before the time since we have modern treatments for heart attack. We need to get the message out to patients, loud and clear, that our hospitals are safe and that patients without COVID-19 are being kept separate from patients admitted with COVID-19. We also need to reinforce the longstanding message to patients – act quickly if you have symptoms of a heart attack or stroke.”

Dr Joe Gallagher, ICGP Primary Care Lead for Integrated Care Programmes (Cardiovascular Disease) speaking as a GP says, “It is really important to look after your heart at this time and if you are worried about your heart health talk to your GP.  Don’t delay in going to hospital if you experience symptoms of a heart attack or stroke.”

The #JustGo campaign message is simple and clear – If you are experiencing the symptoms of a heart attack, – Don’t delay – Every minute counts. If you have chest pain or other heart attack symptoms – such as pain in the throat, neck, back, stomach or shoulders that lasts for more than 15 minutes – you must call an ambulance.

Equally, if you are living with an existing heart condition such as heart failure or heart valve disease and if you are experiencing new symptoms, or a worsening of symptoms, you should contact your doctor or go to a hospital as soon as possible. Similarly, for those diagnosed with Familial Hypercholesterolemia (FH) (a genetic condition where the cholesterol level is very high and needs medical treatment to lower it) or for those under the age of 55, having a family member living with FH or multiple family members with a history of heart disease or stroke – don’t ignore the symptoms of heart attack, act quickly.

The #JustGo Campaign hopes to reassure people that the risk of coronavirus infection in hospital has been minimised for patients being admitted with heart attacks or strokes. The campaign also reaffirms that the risk of dying from an untreated heart attack is 10 times higher than dying from COVID-19.

Croí says – If you are experiencing a heart or stroke emergency – this is NOT the time to ‘stay at home’ – when your heart says so, #JustGo

Learn more:

The #JustGo Campaign is endorsed by:

The National Heart
Programme Ireland

Irish Cardiac Society
European Atherosclerosis Society

Part of a global initiative by the Global Heart Hub in collaboration with FH Europe.

Supported by:

World Heart Foundation

Men’s Health Week 2020 – Be Part of the solution

Pictured on Barna Pier ahead of Men's Health Week 2020: Paul Gillen, Health Promotion Officer, HSE; Pádraig Ó Céidigh, Former Senator; and Patricia Hall, Croí Cardiovascular Nurse Specialist. Photo credit: Boyd Challenger.
Pictured on Barna Pier ahead of Men's Health Week 2020: Paul Gillen, Health Promotion Officer, HSE; Pádraig Ó Céidigh, Former Senator; and Patricia Hall, Croí Cardiovascular Nurse Specialist. Photo credit: Boyd Challenger.
Pictured: Tommy Marren, Midwest Radio with Laurence Gaughan, HSE Health and Wellbeing supporting Men’s Health Week in 2020 in Mayo

HSE Health Promotion and Improvement has funded the Men’s Health Forum in Ireland (MHFI) to coordinate International Men’s Health Week (MHW) 2020 in Ireland. This runs from Monday June 15th until Sunday June 21st, Father’s Day. This year the theme is: ‘Restoring the Balance, Be part of the solution’. 2020 has been an exceptional year in many ways.  All aspects of life in Ireland continue to be shaped by the ongoing COVID-19 pandemic.  It has had a major impact on men’s health.

Individuals across Ireland are trying to re-build their physical health, emotional resilience, relationships, jobs, finances, connections and routines  and everyone is asked to be part of the solution and do something realistic and practical, no matter how small, to help restore some balance and stability to all our lives.

This annual week aims to raise awareness of preventable health problems; encourage the early detection and treatment of health conditions in men; and support men and boys to engage in healthier lifestyle choices / activities. Men still die on average about 4½ years younger than women. They also have a higher incidence of death rates for virtually all of the leading causes of death, including heart disease, cancer, respiratory disease, stroke and suicide.

In the West, the HSE is collaborating with Croí and many other voluntary organisations to provide information and to assist men throughout the region to be more aware of their health.  Themes that will be promoted during the week include mental health, heart health, cancer prevention, physical activity and rethinking what you drink.

Two pre-recorded virtual panel discussions focusing on healthy lifestyles, chronic disease prevention and mental health and wellbeing will be promoted. These sessions will be broadcast during men’s health week on Croí website and shared across various social media platforms including Facebook and Twitter.  They will include expert advice and tips, as well as personal stories from some well-known personalities from the region.

In Mayo, Tommy Marren of Midwest Radio is supporting the week and says, “This week is an opportunity to encourage all men to lead healthy lifestyles, to be more aware of preventable health problems and to seek early detection and treatment for any health problems. This is now more important than ever due to the COVID-19 pandemic, and I urge all men to become involved in the week and access the many supports and services that will be available.”

A new free “Challenges and Choices” Man Manual is available. This covers a variety of men’s health issues including alcohol, food, physical activity, smoking, stress, blood pressure, sexually transmitted diseases, skin cancers, back care and help seeking behaviour.  This manual which was funded by the HSE is available to download or can be ordered from please click on search publications under men’s health.  It is also available on

Discover the beauty of the West Coast with Croí’s Couch to Wild Atlantic Way!

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Pictured at the launch of Croí’s Couch to Wild Atlantic Way (Supported by Laya Healthcare) is Cillian Morris, Business Development Manager, Laya; Kevin O’Reilly, Chairman, Croí; and Christine Flanagan, Director of Fundraising, Croí.

Croí, the Heart and Stroke Charity, has launched a new virtual challenge along the Wild Atlantic Way, encouraging people to get moving and raise funds to help support people living with heart disease and stroke.

Croí’s Couch to Wild Atlantic Way takes runners, walkers and joggers on a virtual journey down counties along the west coast, from Donegal to Clare. Participants can log their daily kilometres and reach stunning discovery points along the way on an interactive map, including Malin Head, Achill Island, Cliffs of Moher and Loop Head Lighthouse. The challenge is proudly supported by laya healthcare.

“We are so excited to launch this stunning challenge. Exercise has been restricted to within a 5km radius for now, but this new challenge opens up our walks and runs virtually to the wild west coast! Our coastal challenges offer routes to suit all abilities over the six weeks – from the Coast of Clare at 6,000 steps a day, to a more challenging route with the Coast of Mayo at 16,500 steps a day,” says Christine Flanagan, Director of Fundraising at Croí.

“I am delighted to take part in this virtual challenge in aid of Croí. It’s a great way to keep up the activity levels, while supporting vital services for people living with heart disease and stroke. I will be taking on the Galway coastal challenge and look forward to reaching the great discovery points along the way,” says Kevin O’Reilly, Chairman, Croí Board of Directors.

Cillian Morris, Business Development Manager at laya healthcare, added, “As Croí’s Health & Wellbeing partner, we’re very proud to support the charity in continuing to promote the importance of heart health in a virtual world. The ‘Couch to Wild Atlantic Way’ is such an inspired idea, we hope record numbers get involved to raise much-needed funds for this worthy charity. Our healthcoach team are on hand to create personalised fitness and nutrition plans for members who want to prepare to take on the tougher challenges along the route. I’m going to give the Donegal Coast challenge a go, it’ll be good training for when I can get back up there in person!”

Funds raised will support heart and stroke services, including Croí’s new helpline, Heartlink West. The challenges facing people living with heart disease and stroke are now greater than any that have come before, and the Croí health team is experiencing increased demand for support services. This event will help Croí to continue to respond to the needs of the community during this difficult time, when people living with heart disease or stroke are at greater risk if affected by COVID-19.

The virtual challenge runs for six weeks, launching June 10th. Registration costs €15 each or €40 for families, with everyone receiving a special eco-friendly Croí Couch to Wild Atlantic Way medal! Discover the beauty of Ireland’s West Coast by taking part in Croí’s Couch to Wild Atlantic Way. Register now at

Croí supports IPPOSI statement on PPI during pandemic

Statement released: May 12, 2020 by The Irish Platform for Patient Organisations

As the COVID-19 pandemic continues to unfold, IPPOSI are keen to ensure that the patient perspective is understood alongside broader public health considerations. To this end, our network of members, which includes 100+ patient organisation members (as well as many other individual patients), stands ready to provide support to Ireland’s health system in any way we can during this difficult time.

We have over a decade of experience in facilitating multi-stakeholder dialogue in response to a range of health challenges (access to medicines, e-health, patient involvement, clinical research). We regularly convene around one table as patients, academics, scientists, clinical researchers, pharmaceutical representatives, and healthcare professionals to identify areas of consensus and to propose solution-oriented responses.

We offer the knowledge, experience and breadth of this network as we continue to advocate for patients to be:

  • involved in the preparation of new policy documents, new research proposals, new innovative tools and treatments.
  • recognised as key partners in the design, delivery and evaluation of digital health solutions from the earliest possible stage.
  • informed and updated around the supply chain for existing medicines; and reassured that the process of assessing and reimbursing new medicines continues.


Strengthening our mutual commitment to patient-centricity and patient involvement

We understand that many decisions now need to be taken within an extremely short timeframe, however we underline that expediency should not trump the quality and/or representativeness of these decisions. Patients need to be involved in the preparation of new policy documents, new research proposals, new innovative tools and treatments. Involvement (particularly early involvement) can ensure that all perspectives inform the direction of travel and that key decisions and initiatives are informed by people’s ‘lived experience’. It is likely that this involvement can build confidence in both the process and the decision. We acknowledge that there may be instances where it is not possible to directly involve patients, and on these occasions, decisions must be consistent with agreed, existing national policy or clinical guidance (documents which hopefully benefitted from patient involvement during development).

**Currently, the NIHR (UK) has demonstrated best practice in this field by renewing its commitment to patient involvement, participation and engagement during the COVID-19 pandemic and by publishing eight new commitments to inform its approach during this period on 16 April 2020.


Investing in our health future by developing patient-driven digital solutions

We recognise that health systems are currently working hard to put in place digital solutions to address health sector challenges during a period of prolonged social distancing. We believe that to maximise the opportunities which digital health affords us, and to minimise the risks, patients need to be recognised as key partners in the design, delivery and evaluation of digital health solutions from the earliest possible stage. Decisions around how data is collected, stored, managed, used and shared must be informed by patient perspectives. We welcome the invitation from the National Children’s Hospital to incorporate patients and families in the process of procuring Ireland’s first national electronic health record. We understand that there are many other e-health projects already under implementation or in pilot phases, and we ask that patients be extensively involved in their evaluation and/or their modification for future large-scale roll out.

**The Data Guardian (UK) is organising a series of ‘Public Dialogue’ workshops throughout 2020 to support and develop guidance for data controllers (including health and social care providers) around how to carry out public benefit assessments when deciding on whether data should be used for purposes beyond individual care. The project oversight group includes patients.


Guaranteeing our medicines supply and approving the use of new (non-COVID) medicines

We know that governments around the world are under pressure to secure the supply of existing medicines (especially those touted as potential COVID-19 treatments) and that national resources have been redirected to the fight against COVID-19. However, we ask that both these efforts are balanced against the needs of the chronic and/or rare disease communities who rely on existing medicines and new medicines to improve their short- or long-term health outcomes.

Firstly, patients need to be informed and updated around the supply chain for existing medicines. Working together, we believe government, industry and patient leaders can get ahead of the media curve and provide reliable patient-tailored information directly to affected individuals and families, thereby reducing undue stress and stockpiling. We welcome the important work already done by the HPRA[1], the government and industry in this space.

Secondly, patients need to be reassured that the process of assessing and reimbursing new medicines continues. Accepting that we may be living with COVID-19 for some time, we must, at all costs, avoid the perception of a hierarchy of health needs. Patients need to be able to manage their existing conditions, and new medicines offering potentially life-saving or life-improving outcomes need to be reviewed for their clinical (and cost) effectiveness and made available for use. This is especially pertinent for immunosuppressed patients as new treatments may offer the potential to reduce their risk of complications as a result of underlying condition(s) were they to contract COVID-19. In line with our Patient Charter published in February 2019, we believe that strengthening patient involvement across the medicines assessment and reimbursement process will help bring these important issues to light.

**NICE (UK) has dedicated a section to keep the public updated on the progress of its assessment of new medicines. It shares a list of treatments which have been prioritised for assessment, including all new cancer medicines.

**IMPORTANT TO NOTE: All examples shared above have been taken from the UK. Unquestionably many of our European Member States are also working hard to involve patients in different aspects of the health sector during this difficult time, however the details of these efforts many not yet have been shared widely for English-speaking audiences.


This position is supported by IPPOSI patient, science and industry representatives. It has been reviewed and endorsed by:

The IPPOSI Board: representatives from patient, science and industry elected to provide strategic advice and governance

  • Ava Battles (Chair)MS Ireland
  • Neil Johnson, CROI
  • David McMahon, Irish Skin Foundation
  • Sarah O’Connor, Asthma Society Ireland
  • Anne-Marie O’Dowd, Cystinosis Ireland
  • Grainne O’Leary, Arthritis Ireland
  • Julie Power, Vasculitis Ireland Awareness
  • Kevin Whelan, Fighting Blindness
  • Orla Hardiman, Trinity College Dublin
  • Anne-Marie Healy, Trinity College Dublin
  • Louise Hopper, Dublin City University
  • Jason Last, University College Dublin
  • Jean Saunders, University of Limerick and CSCS consulting
  • Gaye Stephens, Trinity College Dublin
  • Nuala Carey Abbvie
  • Eleanor Hannon, Biomarin
  • Conchuir MacGlionn, Roche
  • Susanne O’Reilly, Novartis
  • Brid Seoighe, Janssen

The IPPOSI Policy Advisory Committee: representatives from patient, science and industry selected for their expertise in health policy.

  • Tomás Carroll, Alpha-1 Foundation
  • John Dowling, Men Against Cancer
  • Aoife Kirwan, MS Ireland
  • Rachel Morrogh, Irish Cancer Society
  • John McCormack, Policy Advisory Committee member
  • Julie Power, Vasculitis Ireland Awareness
  • Gaye Stephens, Trinity College Dublin
  • Gianpiero Cavalleri, RCSI
  • Jon Salsberg, University of Limerick
  • Clare Harney, IMSTA
  • Carmel Mulroy, Bayer
  • Fred Doherty, Sanofi
  • Paula Guerin, independent consultant (industry representative)

Croí Responds to COVID-19 in the West of Ireland

New Service Launched for Heart & Stroke Patients & Carers

Local Heart & Stroke Charity Croí is responding to the increased needs of those living with heart disease and stroke, as a consequence of COVID-19. Since the beginning of the coronavirus crisis, Croí has been experiencing an ever-increasing demand for information, support and advice from heart and stroke patients and their carers.

“Our health team of community nurses, dietitians, physios and exercise specialists are receiving phone calls, emails and significantly increased web and social media correspondence from all over Ireland – with the greatest demand being from the west of Ireland” says Croí CEO Neil Johnson, who outlined the reasons for this as:

  • Increased fear, anxiety and worry among heart patients and their families due to their increased vulnerability to COVID-19.
  • Increased need for reliable information and reassurance from a healthcare professional.
  • Increased isolation and loneliness.
  • Reduced access (perceived and real) to GP’s, or community health services.
  • Reduced access to services (e.g. cardiac rehabilitation, heart failure nurse specialists etc.) due to redeployment of HSE staff or postponement of services.
  • Cancelled or postponed clinic appointments or hospital procedures.
  • Reduced quality time with doctors or nurses – quicker discharge from hospital; shorter appointments (e.g.: virtual clinics).

“Many people are afraid to visit their doctor or hospital, despite having symptoms that warrant attention and this will lead to adverse or worse outcomes,” said Johnson.

With funding support from local and national healthcare companies, Croí has launched a new community support service across the West of Ireland – Heartlink West – with endorsement from the cardiology services of the Saolta Group.

Announcing details of this new initiative, Croí CEO Neil Johnson said that: “Heartlink West will provide FREE support from our community based, multi-disciplinary health team, led by three highly-experienced cardiac nurse specialists. Concerned individuals can connect with us through a telephone helpline and daily ‘virtual health chats’. Those who call the helpline can speak with Nurses, Dietitians, Physios and Exercise Specialists. For the duration of the current crisis, we aim to provide this FREE service, Monday to Friday from 09:30 -17:30.”

Heartlink West has been made possible thanks to the support of several generous donations from regional and national companies. To learn more about this initiative or for ways to support us please visit

HeartLink West is available Monday – Friday from 9:00am – 5:30pm. Call 091-544310 or email