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On the 15th June, The Heartbeat Trust held their first virtual STOPHF Patient information webcast. This education session was hosted live via YouTube and number of GP’s/patients nationwide were invited to view the webcast from the comfort of their own home/office.

Professor Ken McDonald, Consultant Cardiologist and Medical Director of the Heartbeat Trust along with Dr Mark Wilkinson presented an update on our ground-breaking STOPHF heart failure prevention study and discussed how results from the study have helped shape the expanding heart failure prevention service. Dr Mark Wilkinson, a registrar with the Trust gave an informative talk on how the heart works and what happens to your heart in heart failure. He also gave some excellent tips on making heart healthy lifestyle choices.

The trust received some extremely positive feedback from patients and healthcare professionals alike.  “Thank you all for an excellent presentation. So informative and easy to watch. I have not been able to attend previous meetings due to work commitments so, this evenings arrangements were great for me”. (STOPHF Patient)

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This was the first virtual patient focused educational webcast by the Trust and is potentially the innovative solution required to enhance patient engagement (the wonder drug of the 21st century). The Heartbeat Trust aim to produce a number of these webcasts as a means of offering a virtual solution to STOPHF patient education.

Guests were invited to simply click on the link to visit The Heartbeat Trust YouTube channel at the specified time and date. https://www.youtube.com/channel/UCAfEwrJ0aarrrQ_nSjXF25Q

This education webcast was recorded and is available to watch now on YouTube.

Please SUBSCRIBE to our channel to stay updated on future meetings.

Good for the Heart; The Heartbeat of Bloom

On Thursday 1st June, The Heartbeat Trust launched their ‘Good for the Heart’ garden at Bloom by Bord Bia, to the garden visitors and a host of VIP guests. The Garden titled ‘Good for the Heart’ was awarded Highly Commended by the Bloom Judges.

Pictured at the launch was President Michael D. Higgins and the President’s Wife Sabina Higgins, Micheál Martin (Fianna Fáil leader), Tony Ward (Former Irish Rugby Legend and an active supporter of the Trust) and Dr. Ambrose Mcloughlin (Heartbeat Trust Chairman) and our wonderful volunteers.

As one of The Heartbeat Trusts main focus areas is STOP-HF and the prevention of heart failure, the garden encompasses that message. ‘Good for the Heart’ is a Heart Healthy garden, rich in healthy vegetables and fruit to increase awareness and help in the fight against heart failure. The garden has fruit and veg areas representing the need for healthy diet, highlighting healthy foods that aid in heart health.

Bird feeders with various seeds and nuts represent the importance of lowering cholesterol. Hanging from our apple tree are wooden hearts made by our volunteers which represent the hearts saved by STOP-HF. In the garden is a moss covered chair ornate with blooming flowers to represent life and a bicycle to represent the importance of exercise and fitness.

‘Good for the Heart’ received a lot of positive feedback from the visitors which is not surprising as 1 in 5 people will be affected by heart failure. The garden really hit a chord with people and the messages within the garden were well received.
“Good for the Heart’ is a Heart Healthy garden, rich in healthy vegetables and fruit to increase awareness and help in the fight against heart failure. Heart failure can largely be avoided and with the correct supports can be significantly reduced. We all need to be heart aware and stay heart healthy!” Sinead Hand, Communications Officer, Heartbeat Trust.

Sinéad Hand designed the ‘Good for the Heart’ garden on behalf of the charity and a small but amazing team of volunteers helped create the suburb garden.
Mary Proctor from Lissenhall Nurseries is part of the small team behind Good for the Heart. She has expert knowledge of horticulture and has given incredible guidance with putting the garden together. Lissenhall Nurseries offer a full range of outdoor products, including fruit trees, plants and hedging.

The Heartbeat Trust would like to thank all our garden volunteers for their hard work. Without their support our ‘Good for the Heart’ garden would never have bloomed into fruition. Special thank you to Francis Hand, Nicholas Codd, Gus Keane, Adrienne O’ Connell Flood, Maura Quirke and Dolores Hand.

Tullys Nurseries are one of the main sponsors of the garden. They have given fantastic support to The Heartbeat Trust and supplied planting material for our postcard garden in Bloom.

The garden has been sponsored by a number of suppliers including Lissenhall Nurseries, Tullys Nurseries, Dunshane Nursery, Carl Foran Photography,  Green Worx, Bord na mona and Cuprinol.

The Heartbeat Trust would like to extend their thanks to everyone who has contributed to the garden.

The Heartbeat Trust Launch Education Programme for Secondary Schools

The Heartbeat Trust are proud to announce the launch an education outreach programme aimed at secondary level students. The aim of the education sessions are to encourage teenagers to be proactive and take control of their lifestyle and make heart healthy choices which aid in the prevention of heart failure.

Heart failure is often seen as an ‘old age’ issue however it is becoming more prominent in Irish society. Heart failure can largely be avoided and with the correct aids can be significantly reduced. We all need to be heart aware and stay heart healthy!

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The Education Programme was launched with students from St Tiernan’s Community School, Balally on  April 26th 2017.  Dr. Mark Wilkinson and Ms. Sinead Hand (from The Heartbeat Trust) presented to the students on the Science of Heart Failure followed by an interactive session.

The students were extremely enthusiastic about the education session and The Heartbeat Trust were delighted with the positive feedback.

“We are very excited about the launch of the Heartbeat Trust Educational Programme which ties in nicely with the Trust’s motto of Predict, Protect, Prevent. With this new initiative we aim to educate the younger generation in ways they can be proactive about their own health. We are delighted to be able to engage with the students and encourage them to make healthier lifestyle choices.” Sinead Hand, Communications Officer and School Liaison Coordinator.

The outreach programme run by the Heartbeat Trust charity aims to inspire teenagers to live healthier lives and guide them in their health education. The talks are free of charge and available to secondary school students. If you are interested in having the team visit your school in the next academic year please contact info@heartbeat-trust.org

About The Heartbeat Trust

The Heartbeat Trust, is Ireland’s national heart failure charity, established in 2004 by Prof Ken McDonald and Dr Mark Ledwidge to support specialist clinical and research services in heart failure and heart failure prevention. Patient services are provided in St Michael’s and St Vincent’s Hospitals. St Michael’s Hospital, Dun Laoghaire  is also home to the STOP-HF initiative – which offers screening to prevent heart failure, a service aimed at prevention and early detection.

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The STOPHF screening initiative is where individuals (over 40 years of age who have one cardiovascular risk factor such as high blood pressure or diabetes) have a simple blood test which can predict those at risk of not just heart failure but other cardiovascular diseases, allowing more focused care to be directed to these at individuals.  The programme began in 2004 as a research project with the main aim of assessing if people with risk factors for heart failure could have their risk defined by the use of a blood test known as Natriuretic Peptide (NP). NP is a protein that is released from the heart when it is under stress or strain.

Special thank you to all the students and staff at St Tiernan’s Community School, Balally.

Creative Panda for sponsoring our bookmarks.

Natasha’s Living Foods for sponsoring some delicious (healthy) treats!

STOPHF (Screening to Prevent Heart Failure) Information video Launch on European Heart Failure Awareness Day

On May 5th, European Heart Failure Awareness Day, The Heartbeat Trust are proud to launch the STOPHF (Screening to Prevent Heart Failure) information video. The video was created in order to demonstrate to the wider community that STOPHF is a simple blood test with incredible results.

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Nurse and patient STOPHF NP blood test

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The STOPHF screening initiative is where individuals (over 40 years of age who have one cardiovascular risk factor such as high blood pressure or diabetes) have a simple blood test which can predict those at risk of not just heart failure but other cardiovascular diseases, allowing more focused care to be directed to these at individuals.  The STOPHF programme began in 2004 as a research project with the main aim of assessing if people with risk factors for heart failure could have their risk defined by the use of a blood test known as Natriuretic Peptide (NP). NP is a protein that is released from the heart when it is under stress or strain.

The information video was created by a wonderful team of volunteers and The Heartbeat Trust  would like to thank Mrs. Dolores Hand (actress) and Mr. Cian Brennan (videographer) for their contributions.

About The Heartbeat Trust

The Heartbeat Trust, is Ireland’s national heart failure charity, established in 2004 by Prof Ken McDonald and Dr Mark Ledwidge to support specialist clinical and research services in heart failure and heart failure prevention. Patient services are provided in St Michael’s and St Vincent’s Hospitals. St Michael’s Hospital, Dun Laoghaire  is also home to the STOP-HF initiative – which offers screening to prevent heart failure, a service aimed at prevention and early detection.

Heart Failure the Facts

Did you know…? Heart Failure affects approximately 90,000 people in Ireland, costing upwards of €700 million. One in five of us will develop heart failure in our lifetimes. These figures are staggering and more is needed to help prevent this silent killer.

STOPHF Video links

Vimeo – https://vimeo.com/210938511

Youtube – https://youtu.be/lHHS6HAG_WI

Heart Failure Virtual Clinics

One in 5 of us will develop heart failure in our lifetime. There are up to 90,000 people in Ireland living with Heart Failure and the estimated cost of Heart Failure is €660 million.

Heart Failure, with the correct supports can largely be managed in the community. That’s where the Heartbeat Trust steps in with its innovative approach to health care management.

The Heartbeat Trust has been at the forefront of development of structured care programmes for the prevention and management of heart failure, including a “virtual consultation” service to enable specialists and GPs to discuss cases and reduce the need for outpatient department referral by 80%.

The Heart Failure Virtual Clinics (HFVC) are used to disseminate expert advice and education to GPs. Using a web conference platform GPs can log in remotely, following presentation of a short CME topic GPs can discuss their cases with Prof Ken McDonald, Consultant Cardiologist and Medical Director of the Heartbeat Trust, Dr Patricia Campbell, Consultant Cardiologist and their specialist team. The HFVCs provide online, real-time conversations between the GP and specialist allowing speedy focused interactions

The trust has developed an info-graphic highlighting the key benefits of the HFVC and includes a number of excellent quotes from GPs across the country.

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For GPs, the HFVC provides a dynamic learning environment, improved knowledge base, peer to peer support and most importantly the necessary supports to maintain and treat heart failure patients in the primary care setting.

By managing heart failure in the community, the HFVC removes a step in the traditional care pathway facilitating interaction between the specialist/GP. The HFVC care pathway is cost efficient and creates a dynamic, collaborative communication environment compared to the traditional referral letter pathway. This in turn reduces costs and the need for patient travel and family inconvenience.  Moreover, the HFVC reduces the need for Out Patient Department (OPD) referrals which frees up hospital OPD slots for those in need of standard clinics resulting in shorter waiting times and speedier reviews.

The Heartbeat Trust are passionate about the future advancement of eHealth in Ireland and are optimistic about the use of technology for wider dissemination of heart failure knowledge and community care.

How It Works.

The Heart Failure Virtual Clinic is service that has been successfully running for twenty-four months.  These virtual consultations are held bi-weekly from the Heartbeat Trust head office and are currently on Tuesdays and Fridays at 1pm., having recently expanded into the Carlow Kilkenny region through support from the HSE.

CME topics include (but are not limited to), Diagnosis of Heart Failure, Management of Stable Heart Failure, Troubleshooting medications in heart failure and other similar topics. Following the CME topic up to six cases are discussed which results in an intense hour of impartation of knowledge.

Patient referrals are accepted through email/FAX and Healthlink, via the Heart Failure Virtual Clinic Referral tab.

Presently, there are 150 GPs signed up to date across the East Coast, Midlands and now Carlow Kilkenny region with 100% of GPs agreeing that the HFVC advice was useful in treating their patients and that the patients themselves benefited as a result of their participation in the HFVC. The patients themselves were also happy to have their conditions discussed with expert and groups of GPs and relieved to not be referred to the OPD.

The Heartbeat Trust provide full training for first time users or those that require a refresher.

If you would like further information or to sign up to the HFVC please contact Lisa McCudden on 0877474436 or lisa@heartbeat-trust.org

 

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Heart Failure Community Calls on Government to Prioritise ‘Forgotten’ Illness Which Will Affect 1 in 5 People in Ireland 

New report finds treatment of Heart Failure is no longer a lost cause and recommends a framework to improve lives of 90,000 affected by heart failure.

Heart Failure is a serious, but forgotten, chronic condition which carries a huge cost of €660 million per year to Irish society.  Heart Failure is the leading cause of hospitalisations in Ireland yet just 7% of people in Ireland can identify symptoms of Heart Failure.

Pictured at the launch are L to R Minister Sean Kyne, TD, Dr. Ambrose McLoughlin, Chairman Heartbeat Trust and Kevin O’ Reilly Chairman Croi, Heart & Stroke Charity.

Click here to read full report.

Monday 21st November, 2016: The treatment of Heart Failure, a ‘forgotten’ chronic condition, is no longer a lost cause, according to the authors of a new report entitled ‘Heart Failure Country Barometer: Ireland’. The report outlines four key policy priorities and calls on the Government to implement this framework to improve the lives of 90,000 people affected by Heart Failure6.

Minister of State for Gaeltacht Affairs and Natural Resources, Sean Kyne, TD officially launched, and contributed to, the report which, most importantly, provides solutions to this major health challenge which costs the state €660 million per year1. Heart Failure, a serious and often debilitating chronic condition, has a worse prognosis than many of the most common forms of cancer and can lead to poor quality of life for those affected4.

Speaking at the launch meeting, Minister Sean Kyne, TD said, “For too long Heart Failure has been the forgotten condition in health policy in Ireland, despite its impact on patients’ lives and the economy. Today, we have outlined the current situation in Ireland and highlighted the unmet needs of both the medical and patient Heart Failure community. The burden of Heart Failure will only increase in years to come so we must make Heart Failure a truly national priority now, and implement the recommendations put forward in this Barometer report.”

The ‘Heart Failure Country Barometer: Ireland’ report, developed by Croí, the Heartbeat Trust, and supported by Novartis, with contributions from medical professionals, patients and advocacy experts, highlights four key policies to prioritise and recommends how to achieve them:

  • Make Heart Failure a national priority: Explicitly mention Heart Failure within existing chronic disease policies and ensure there are sufficient resources to implement the HSE’s National Clinical Programme for Heart Failure on a national level, with adequate funding for both GP and hospital care.

 

  • Prioritise speedy diagnosis and treatment: Ensure that patients with symptoms of Heart Failure are diagnosed as early as possible, without delay.

 

  • Ensure consistent and coordinated patient care: Create a coordinated, community-based national programme between the hospital and community care at general practice level to provide patients greater continuity of care and encourage patient self-management.

 

  • Increase awareness and understanding of Heart Failure: Support a national Heart Failure prevention programme by raising public awareness of the risk of developing Heart Failure and ensuring access to high quality information and support for both the public and the medical profession.

Commenting on the report, Professor Ken McDonald, Consultant Cardiologist and National Clinical Lead for Heart Failure said, “Chronic illness threatens to overrun our healthcare system. Heart Failure, as the most complex of these illnesses, can be used as a pilot to establish effective methods of managing chronic diseases, primarily in the community, with the support of hospital-based specialists, when needed. A large number of premature deaths still occur as a result of lack of knowledge of Heart Failure and its symptoms. Better recognition would prompt people to seek treatment at an earlier stage, leading to more accurate diagnosis, decreased risk of hospitalisations and improved survival rates. Most types of Heart Failure are preventable, patients who are treated early can significantly improve their outcome. The policy asks we are calling for will improve the prevention, treatment and management of Heart Failure in Ireland.”

Neil Johnson, Chief Executive, Croí said, “This report brings together medical expertise, patient insights, advocacy experience and economic data to create a framework for our Government to improve the lives of those affected by Heart Failure in Ireland. The burden that Heart Failure can have on patients’ lives, and the State, needs to be improved as Heart Failure treatment is no longer a lost cause. We know what we need to do to protect 90,000 hearts in Ireland, and the additional 10,000 newly diagnosed each year. Now we must do it.”

In Europe, 15 million people live with Heart Failure. Currently there is no EU-wide strategy supporting public awareness, prevention, diagnosis and management of Heart Failure. Strong leadership by European and national policy makers is essential to reduce the future burden of the condition. In October, a new Written Declaration on Heart Failure was launched in the European parliament, in partnership with patients, professionals and parliamentarians. Irish MEPs Mairead McGuinness and Nessa Childers are supporting the Written Declaration on Heart Failure.

For more information, and to read the full framework of policy priorities, visit http://www.heartbeat-trust.ie / www.croi.ie / www.novartis.ie

and follow us on Twitter and Facebook #heartfailure #changeHFpolicy.

 

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A brand new Heart Failure Patient Toolkit, specially developed for people with heart failure and their families, is brought to you by the Heart Failure Patient Alliance – a partnership between The Heartbeat Trust (the national Heart Failure charity) and Croí, the heart and stroke charity  (the West of Ireland Cardiac Foundation) which aims to increase awareness of Heart Failure and provide a voice for those living with the condition.

In this Toolkit you will find:

Practical advice on living with Heart Failure.

Tips on improving your health and wellbeing with healthy lifestyle changes like being active and eating well.

Videos featuring advice from Irish people living with Heart Failure as well as a range of health care professionals such as a cardiologist, a GP, a dietitian, a heart failure nurse specialist and more.

Quizzes and patient case studies to strengthen your knowledge and understanding. To access the toolkit please click here.

Creation of this Toolkit was sponsored by Novartis.

The Heartbeat Trust’s 6th Public Information Meeting took place in Fitzpatrick’s Killiney Castle Hotel, Wednesday, May 11th 2014. The meeting was attended by over 170 STOP-HF patients and carers.

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Professor Ken McDonald, Consultant Cardiologist and Medical Director of The Heartbeat Trust along with staff from the Trust presented an update on our groundbreaking STOP-HF heart failure prevention study and discussed how results from the study have helped shape the expanding heart failure prevention service. Presentations on ongoing research, medication adherence and clinical trials were also given by Alison Sheerin, Research Nurse and Dr Fiona Ryan, Clinical Pharmacist. The Trust’s latest recruit Dr Conor Kerley, Dietician delivered tips on nutrition and exercise in heart disease prevention.

A Q&A session took place following the presentations where the audience asked our team of healthcare professionals a variety of questions on heart health from family history, medications and diet.

Patient feedback was tremendous and everyone complimented the staff for their delivery of a most informative and people friendly presentation. The question and answer session was excellent.  With one patient saying “It is indeed so very reassuring to know that we have excellent doctors such as Prof McDonald and his team working on our behalf.’” These public meetings help open a dialogue and promote the exchange of information between our community and their health care providers within the Heartbeat Trust.

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Approximately 1 in 5 people in Ireland are at risk developing heart failure, this group are the focus of the STOP HF (screening to prevent heart failure) programme run by the Heartbeat Trust. STOP HF began as a research programme in 2004 looking to see if people with risk factors for heart failure can have their risk defined by the use of a blood test known as Natriuretic Peptide (NP). NP is a protein that is released from the heart when it is under stress or strain.

People with risk factors for developing heart failure and in particular those with high blood pressure, high cholesterol, diabetes and a prior heart attack have participated in the programme. So far almost 3,000 people have been enrolled. The programme has recently expanded form the East Coast region into the Midlands region.

Prof McDonald, Medical Director of the Heartbeat Trust said “This important programme is a unique effort internationally and will provide important information on how best to prevent the development of heart failure. Remembering ‘prevention is better than the cure’ through early detection of risk the mortality and quality of life for the general population can be improved and in turn there can only but be a reduction in the economic burden on the health service.”

If you would like to hear more about the service or our ongoing research studies please contact Lisa at 083 4656098 or email lisa@heartbeat-trust.org.

Heart Failure Awareness Day, an initiative of the European Society of Cardiology  is designed to raise awareness about the importance of recognising Heart Failure, getting an accurate diagnosis and receiving optimal treatment

Heart Failure Patient Educational Resource launched at the meeting

Heart Failure in Ireland

Heart failure is a serious condition affecting 90,000 people in Ireland. There are another 160,000 people living with impending heart failure. Heart failure causes up to three times as many deaths as advanced cancers like bowel and breast cancer and is the number one reason for hospitalisation in the over 65s. Despite all of this heart failure awareness is worryingly low. One in three Irish people mistake heart failure symptoms with the normal signs of aging. One in four Irish people wait a week or more to seek medical advice when experiencing symptoms of heart failure1. Fewer than one in 10 people can identify three common symptoms of heart failure and these Irish figures emphasise how important it is for the public to learn more about the condition.

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Heart failure prevalence is increasing, affecting 2% of the population on the island of Ireland, with numbers set to grow as the population ages and associated conditions, in particular diabetes, become more prevalent.  The cost of heart failure approximates one billion euro across the island, driven primarily by hospital bed days numbering in excess of 230,000 bed days from emergency hospitalisation in the Republic of Ireland in 2012 alone.

Irish Cardiac Society calls for rapid community Heart Failure diagnosis

Professor Ken McDonald, President of the Irish Cardiac Society, has called for rapid Community Heart Failure Diagnosis to mark European Heart Failure Awareness Day, May 6th 2016.

“Although traditionally regarded as having a poor prognosis with little therapies to improve outlook, recent advances in heart failure therapies have dramatically changed this and led to much better quality of life and longer lives for people with heart failure” said Prof McDonald, a consultant cardiologist specialising in heart failure . “However, the critical first step for many of our patients in the community is rapid access to an accurate diagnosis and the definition of a care strategy following consultation between the general practitioner and the cardiologist”.

“At present this is compromised by difficulties experienced by our General Practitioners in getting access to important diagnostic tests and specialist opinion, leading to people with heart failure not receiving access to these life-changing therapies. A 6 month delay in diagnosis is estimated to lead to a 23% increase in emergency hospitalisation for people with suspected heart failure”.

To highlight this issue the Irish Cardiac Society established a North South GP / Specialist Working group who have agreed an approach to community diagnosis of this condition, which they feel should be universally available on the island of Ireland and which emphasies the  importance of access to diagnostic tests for heart failure. The Irish Cardiac Society encourages all involved in providing resources in health care on the island to work towards achieving specific goals over the next 12-24 months.

The society believes that ensuring rapid access to relevant diagnostics within a 2-6 week period, dependent on the severity of presentation, and subsequent specialist opinion within a further 4 weeks, will be a marked improvement on current delays which today can be in excess of 1 year.  This would result in speedy accurate diagnosis, careful planning of a treatment plan and significant reduction in subsequent Emergency Department attendance and emergency hospitalisation.

About Diagnostic Tests for Heart Failure

The main diagnostic tests required for this pathway are natriuretic peptides (a blood test) and echocardiography (an ultrasound scan of the heart).  Natriuretic peptides are proteins produced when the heart is under stress or strain.  A normal natriuretic peptide means that the GP need not send the patient for echocardiography and reduces demand on this service by 30%.  Echocardiography is an ultrasound of the heart which allows the doctor to see if there are abnormalities of structure or function of the heart consistent with heart failure and is essential to confirm the diagnosis and guide treatment.  Lack of access or delays in accessing these tests from the community leads to delays in diagnosis and emergency hospitalisations for this condition.

About the Irish Cardiac Society

The Irish Cardiac Society is the professional society in Ireland for those whose primary interest is in the practice of Cardiology, Cardiovascular Surgery and Cardiovascular Research.    www.irishcardiacsociety.com

About the North South GP / Specialist Care Initiative

The North South GP/Specialist Care Initiative is a working group of the Irish Cardiac Society involving general practitioners and cardiologists from  both from the Republic and Northern Ireland and cardiologists from both regions as well. The purpose of this group is to advise and discuss matters of mutual importance relating to Cardiovascular Disease, striving to improve the links between primary and secondary care.

European Heart Failure Awareness Day, the platform to launch “Keep It Pumping”

The “Keep It Pumping” campaign was officially launched today, European Heart Failure Awareness Day, to raise awareness of heart failure and the importance of recognising heart failure symptoms. The event which is being held in Dundrum Town Centre from the 6th – 8th May, is supported by The Heartbeat Trust and Croí and sponsored by Novartis.

The “Keep It Pumping” campaign aims to raise awareness of heart failure and its symptoms. We are encouraging people to donate their heartbeats in support of heart failure awareness. The “Keep It Pumping” app is available to download for free and lets you record and save your “heartbeat”. It also aims to raise awareness of the symptoms of heart failure and encourages people to seek medical advice if they or a family member are experiencing these symptoms. Common symptoms of heart failure include shortness of breath, low energy, swelling of the feet and ankles and coughing/wheezing.

In addition the Heart Failure Patient Alliance, founded by the Heartbeat Trust and Croí, is launching comprehensive heart failure education materials to support people who are living with heart failure and their carers, with the support of Novartis. This includes; practical advice on living with heart failure, helpful tips and advice from Irish people living with heart failure, their families, doctors, nurses, physiotherapists and dieticians.

Professor Ken McDonald, Consultant Cardiologist, Medical director of The Heartbeat Trust and National Clinical Lead for Heart Failure, said; “Education plays a huge role in disease prevention and management. The burden of heart failure is enormous from both societal and economic perspectives. Everyone needs to be better informed about heart failure: from symptoms and prevalence, to consequences and what can be done about it. Our aim is to help to reduce the burden of heart failure through the provision of educational material. To access this material visitwww.heartbeat-trust.ie or www.croi.ie/heart-failure-resources.”

Neil Johnson, CEO, Croí said; “It is important that people can recognise heart failure symptoms and if suffering from them speak to their GP at their next appointment. The most common symptoms of heart failure are; shortness of breath or trouble breathing, fatigue, swollen feet or ankles.”

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Loretto Callaghan, Managing Director, Novartis Ireland said, “Research conducted by Novartis in Ireland clearly shows that the awareness of health failure symptoms, is worryingly low, with most people mistaking the symptoms to be signs of aging. The only way we can start to tackle and manage the condition, is by raising awareness and uniting to improve the lives of those living with it.”

“Novartis is proud to support the Keep It Pumping campaign to help people identify symptoms of heart failure early, so they can act immediately to ensure that they will have an earlier diagnosis leading to better outcomes. For people already diagnosed with heart failure we are delighted to support the Heart Failure Patient Alliance to bring education and support to patients and their carers ensuring they are empowered and informed enough to manage their condition effectively.”

Prof Ken McDonald, Dr Ambrose McLoughlin, Neil Johnson and Pat Spillane at the launch of the HFPA, Dublin

Prof Ken McDonald, Dr Ambrose McLoughlin, Neil Johnson and Pat Spillane at the launch of the HFPA, Dublin

The Heartbeat Trust and West of Ireland Heart and Stroke Charity, Croí, supported by Novartis, have partnered to develop the HFPA

The HFPA was officially launched in Dublin by former GAA footballer Pat Spillane

It is the first initiative of its kind to support the day-to-day management of Heart Failure for patients

It aims to enable discussion of patient needs and represent patient needs in development of healthcare policy

The Heart Failure Patient Alliance (HFPA) was officially launched last week in Dublin by former GAA footballer, Pat Spillane, at an event attended by more than 160 heart failure patients, their carers and clinicians. The HFPA is the first initiative of its kind and aims to build a patient forum to address the lack of heart failure resources for patients. It is spearheaded by charities the Heartbeat Trust in collaboration with Croí, and is supported by multinational pharmaceutical company, Novartis. A comprehensive educational pack for patients and carers was also launched at the meeting.

Heart Failure Patient Educational Resource launched at the meeting

Heart Failure Patient Educational Resource launched at the meeting

Heart failure is one of the most prevalent chronic illnesses in the western world, being the predominant condition of all chronic diseases. As a consequence of an ageing population heart failure is set to dramatically increase over the next number of years, which is why it is important now more than ever, that we plan for the future to improve care for heart failure patients and their carers. It is fundamentally important to include people living with heart failure and their carers in this process.

The HFPA’s main goals are to facilitate discussion of patient needs in order to help manage their day-to-day existence with heart failure; to represent patient needs in developments of healthcare policy and initiatives in heart failure in Ireland; to interact with international heart failure patient forums on areas of mutual interest and importance and to encourage development of local self-care groups to help patients and carers to manage more day-to-day issues in their illness.

Speakers on the day included Professor Ken McDonald, Consultant Cardiologist, Medical Director, The Heartbeat Trust and the National Clinical Lead for Heart Failure; Karen Craddock, Physiotherapist, who delivered talks entitled ‘What is Heart Failure?’ and ‘Keeping active with Heart Failure’ respectively. Bronagh Travers, Heart Failure Specialist Nurse, The Heartbeat Trust, spoke on ‘Heart Failure signs, symptoms and self-care’.

Pat Spillane opens the launch of the HFPA

Pat Spillane opens the launch of the HFPA

Symptoms include severe breathlessness, fatigue from everyday activities including climbing stairs and walking to the shops; sudden weight gain, for example two to three kilograms in a couple of days; swollen ankles and fluid build-up in the lungs and around the body. Alarmingly approximately one in three people mistake heart failure symptoms as normal signs of ageing.

Prof Ken McDonald, Medical Director of the Heartbeat Trust, said, “Heart Failure is a chronic illness affecting more than 90,000 people in Ireland. As one of the most prevalent chronic illnesses in the western world, it is astounding that management of the disease is so lacking when it comes to provision of a platform to enable discussion from the patient’s perspective.

“The HFPA will respond to the patient’s needs, and will both drive and support patient involvement at an individual level and at a group level. The Heartbeat Trust and Croí intend that the HFPA resolves the often poor management of this condition and improves resources for heart failure patients in communities throughout the country.”

Neil Johnson, CEO, Croí said, “We are delighted to partner with the Heartbeat Trust to give a voice to those living with heart failure in Ireland. We know that the burden of heart failure could be significantly reduced through earlier diagnosis and better access to diagnostics.

“Now that we are officially launched, the Heart Failure Patient Alliance will advocate for greater awareness of the signs and symptoms of heart failure as well as better care pathways so that people living with heart failure and their carers can enjoy a better quality of life.”

Dr Ambrose McLoughlin, Chairman, The Heartbeat Trust said, “It is extremely important that we mobilise the patient voice to improve the healthcare needs of people living with heart failure. Our hope and intention is to develop the HFPA into a nationwide organisation, potentially involving other cardiovascular organisations, in order to best ensure early diagnosis and to lessen the burden of Heart Failure on the patient and on the healthcare system.”

Loretto Callaghan, Managing Director, Novartis Ireland said, “For many patients and their families in Ireland, being diagnosed with Heart Failure is frightening and upsetting. We know that patients who receive good heart failure education and support are empowered and informed enough to manage the condition effectively.

“Novartis is glad to support the HFPA and bring awareness and attention to this chronic illness which impacts tens of thousands nationwide.”

About the Heart Failure Patient Alliance

The HFPA is a patient forum to support the management of chronic illness requires active patient involvement, both at the level of the individual patient as well as at group level, the latter to ensure that the views and needs of the patients and their families are heard and acted on. As one of the most prevalent chronic illnesses in the western world, management of heart failure has only addressed patient involvement on an individual case level, and has not to date developed a patient forum to enable discussion of the patients’ perspective. The Heart Failure Patient Alliance is designed to address this deficiency.

About the Heartbeat Trust
The Heartbeat Trust is a charity established in 2004 by Prof Ken McDonald and Dr Mark Ledwidge to support specialist clinical and research services in heart failure and heart failure prevention in Ireland. The Heartbeat Trust’s services are based in St Vincent’s Hospital, St Michael’s Hospital, Dun Laoghaire and The Conway Institute, UCD.

About Croí
Croí is a not-for-profit foundation established in 1985 as a limited company dedicated to fighting heart disease and stroke in the region. We are an independent organisation, totally funded through our own fundraising activities, voluntary contributions and philanthropic support.

Heart Failure Educational Aids

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Picture1.PDF.Lisa Picture2.PDF.LisaPicture3.PDF.Lisa

                            Traffic.Lights.PDF.Lisa               Companion. Front cover