Irish Heart Foundation Patient Support Services

Heart Health 41

Irish Heart Foundation Patient Support Services Cardiovascular disease is responsible for some 9,000 deaths in Ireland each year – around 30% of all mortality. Over half a million people are living with a cardiovascular condition, with 80,000 being discharged from hospital each year, often returning home to a bleak and uncertain future.

Whilst stroke and heart failure supports are our primary focus, we are also developing services across a broad range of cardiovascular conditions, including heart attack, people with cardiomyopathies and congenital heart disease, families affected by sudden cardiac death and people with ICDs.

Among stroke survivors, there’s a widespread sense of abandonment resulting from a dearth of rehabilitation and other crucial services and supports in the community crucial to meet the challenges of often significant physical, communication, social and psychological difficulties. In the last decade stroke mortality has fallen by around a third whilst stroke incidence is up by around 25%. But there has been no significant investment in post-discharge services to meet the rapid rise in numbers returning home.

Thanks to a system of referral that is strongly supported in stroke units and heart failure services, we have access for the first time to patients when they need help most – in the weeks after discharge or step down from their clinical support. This has enabled us to develop pathways for both stroke and heart failure from the hospital gates for as long as people need us.

Meanwhile, heart failure patients must endure the revolving door syndrome of a 90-day readmission rate to hospital of 30% that is seriously detrimental to their quality of life, often for the want of basic information and support.

These services are delivered separately – reflecting differing patient needs and in order to maximise the proven impact of peer support. Despite this, the main service elements are the same.

They incorporate: - Nurse-led needs assessments and regular support calls through our Stroke Connect and Heart Connect programmes

Against this backdrop, the Irish Heart Foundation established specific pathways of support for stroke survivors and heart failure patients that are impactful, cost-effective and can be delivered at scale.

- Short duration interventions meeting specific needs

In the last 12 months these services, launched following the outbreak of Covid-19, have enjoyed enormous growth and now support around one in every three stroke survivors returning home from hospital nationally, along with thousands of heart failure and other cardiac patients.

- Peer to peer phone support

Our services prevent hospital readmission among heart failure patients, reduce the requirement for long-term care among stroke survivors and remove a significant burden from frontline services.

They empower patients to take control of their own health and wellbeing but ensure that where their conditions are deteriorating, they are appropriately escalated without delay. It’s important to stress that the Irish Heart Foundation provides non-clinical psychosocial support services that don’t overlap with any other clinical services.

- Younger patient networks - Face-to-face groups - Online support

- Stay Connected low support programme Stroke Connect and Heart Connect Both services start with a nurseled needs assessment conducted by phone. Stroke survivors receive up to eight weekly phone calls from our support coordinators and trained volunteers who provide emotional support, quality information and guidance, help to meet recovery goals and signposting. The heart failure calls are monthly and involve a greater emphasis on reiterating consistent health messages from heart failure clinics in relation to symptom recognition and self-care, along with information and emotional support. Our nurses remain available to provide general health advice and information as required.

Written by Chris Macey, Director of Advocacy and Patient Support with the Irish Heart Foundation

The service includes a traffic light system to escalate calls where there is a medical concern.

This has provided a robust early warning system for patients who may turn out to be at risk of recurrent stroke or deterioration among heart failure patients.

We also actively signpost our members to other community supports and organisations such as the HSE community programme, Family Carers Ireland, Social Prescribing and Citizens Information.

Short programmes In the course of these calls patients are offered counselling if appropriate and when they have concluded, we discuss further service options, including a menu of short programmes where a specific need has been identified, which typically run for between 6-12 weeks and include:

programmes. These include information sessions and social groups which are very popular in older age groups. We have three moderated closed Facebook groups for heart failure, stroke and our carers networks, which provide a vibrant source of peer support, evidenced by high daily engagement rates. Specific online supports for heart failure patients include a fluid tracker app; symptom checker and an online cardiac rehab programme developed with the Irish Association of Cardiac Rehabilitation.

Peer to peer phone support We provide peer to peer support delivered one-to-one by phone by fully trained stroke survivor and heart patient volunteers, many of whom have been through our services and who give their time both to give something back and to help meet their own recovery goals.

- Fatigue Management

Working age support networks

- Back to Work

We have a dedicated working age stroke support network to meet the needs of survivors who now account for more than a quarter of all strokes in Ireland. The HSE estimates that 1% of under 65s in Ireland have heart failure – as many as 43,000 people and a support group to meet their needs in now being established.

- Mindfulness - Cognitive therapy - Physical Exercise - Psychological support - Communication - Art and Music therapy We also facilitate referral to the HSE Living Well, Living Well with a Cardiac Condition and Building Better Caregivers programmes.

Online support programmes Members are given access to a suite of online support

Face to face support groups Our face to face stroke groups are back in action after Covid, along with our nationwide series of heart failure information meetings. We currently have 20 face to face stroke groups around the country, including two for younger survivors.

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42 Heart Health Stay Connected programme Stay Connected is for members who are not actively using our services but who want to stay in touch and have the option to re-connecting fully at a later date. They receive a low support service intervention that includes a quarterly newsletter, access to our nurse support line, our full range of digital and print resources and our calendar of events. Crucially, they can also access our services if their circumstances change.

Information Providing access to accurate, authoritative and easy to understand information is one of

the most important services we can deliver.

- A team of nurses work on our Nurse Support Line, supporting the public, along with our service users.

- We distribute over a half a million leaflets and educational materials each year that give people affected by cardiovascular disease the information they need to live well.

- And our website and social media platforms are key resources for patients, families and carers, together with healthcare professionals and the

general public. We have over 100,000 followers on our social media platforms and there are more than 250,000 annual visits to our website.

Carer supports We provide specific support for carers of both heart and stroke patients through Facebook and other online services. These include: - Support Pack - Peer Facebook community - Information Zoom Sessions - Signposting to external supports - Access to Nurse Support Line

Our services are proving their impact through significant reductions in requirement for long-term care and hospital readmission; they cost a fraction of the increased capacity they are providing in hospitals and nursing homes; and they are built to be delivered at scale.

Our next objective is to forge a long-term partnership with the HSE to deliver sustainable high grade support. This will ensure that at last cardiovascular patients emerge from the lowest rung of priority in the provision of essential community services and supports perhaps of any serious chronic condition, enabling them to live the best life possible with the effects of heart disease and stroke.

News Misbeliefs and Serious Lack of Symptom Awareness Liz Yeates, CEO Marie Keating Foundation, lung cancer patient, Ted O'Driscoll, and awareness advocates, Venetia Quick and Catherine O'Flaherty, kicking off Lung Cancer Awareness Month Picture Andres Poveda

Only 5% of Irish people are aware that lung cancer is the leading cause of cancer related deaths among women, while just 20% know that it is the cancer that claims the most lives among men.

The figures were revealed in new research commissioned by the Marie Keating Foundation who have issued a stark warning that Ireland is not making satisfactory progress on lung cancer, stating that “lung cancer death rates remain shockingly high, while symptom awareness is alarmingly low.”

As part of its ‘Big Check Up 2023’ campaign, the charity has outlined

a three-point action plan that it says will save countless lives now and in the future.

The action plan aims to: 1) change how we see lung cancer, countering the misbelief that there are more dangerous cancers for both men and women and highlighting the fact that lung cancer still claims more lives than any other cancer; 2) raise lung cancer symptom awareness, harnessing the use of innovative, specially developed, new mobile technology in partnership

with Snapchat, to spotlight symptoms and urge people to get checked; 3) renew pressure on the Government to introduce a National Lung Cancer Screening programme, similar to breast, bowel and cervical cancer screening, to help save lives.

Launching the campaign, Liz Yeates, CEO of the Marie Keating Foundation, said, “The time has come to change how people see lung cancer, to raise public awareness and encourage those with lung cancer signs and symptoms to get checked, because early detection, combined

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with all of the new treatments available, significantly improves chances of positive outcomes.”

Currently in Ireland, the 5-year survival rate for lung cancer patients is just 24%. This is extremely low compared with other five-year survival rates for common cancers such as, Prostate: 93%, Breast: 88% and Colorectal: 66%.

Furthermore, the National Cancer Registry of Ireland has predicted that rates of lung cancer will rise rapidly by 2045, with lung cancer diagnoses expected to increase by as much as 176% among women, and by 94% among men.

Supporting the campaign, Professor Jarushka Naidoo, Professor of Medical Oncology and Consultant Medical Oncologist at Beaumont RCSI Cancer Centre, Lung Cancer Chair for Cancer Trials Ireland and Adjunct Assistant Professor of Oncology at Johns Hopkins University said: “Early detection can save lives.

When lung cancer is found at an earlier stage, there is a better chance of the ability to deliver treatments with the intent of cure.

We have seen an explosion of new treatment options for patients with lung cancer. We need to give patients a chance to receive these therapies, by identifying lung cancer earlier, and more able to tolerate treatment. Evidence from other countries shows that early detection programmes can pick up lung cancer early, and result in improved patient outcomes.”