How heart and stroke patients are becoming Champions with the Irish Heart Foundation
As healthcare professionals, the opportunity to see patients thrive after diagnosis is no doubt rewarding. But while medical therapies have advanced in the area of cardiovascular health, and are allowing patients diagnosed with life long, or life-limiting conditions, to live longer and sometimes with a better quality of life from a medical perspective, increasingly many heart and stroke patients have been reporting to the Irish Heart Foundation that there is a need for far more than just medical therapies, if they are to feel that they can really thrive in their lives post-diagnosis.
Discussions with both heart patients and stroke survivors in the Irish Heart Foundation Patient Support Services, reflected that in addition to medical management of their condition, many patients, particularly of working age, who had professional skills, but were no longer able to use them in a career setting due to their diagnosis, felt redundant, hopeless and lost postdiagnosis. In addition, with many reporting mental health challenges in coping with the isolation and loss of the life and lifestyle they knew as a result of their illness, and admitting to struggling with the reality of the implications of their diagnosis, there was an emerging need being witnessed by the organisation that a more holistic approach to patient health and wellbeing post diagnosis was required, if these patients were to thrive.
Since Covid 19, online patient service options in the Irish Heart Foundation grew, as did accessibility to these from all parts of Ireland. As a result, more patients have accessed, or have been referred into our services by members of the medical profession. Referrals are often necessary for patients who need support, largely due to the lack of patient support services in their geographical communities. The growth in patients into the service saw an expanse in the Irish Heart Foundation Patient Support Service offerings to include the addition of counselling, mindfulness, wellbeing, back to work training, exercise classes, and a host of other ancillary supports, as well as it’s highly used Nurse line.
Inevitably this increase in patient numbers would result in a greater awareness by the organisation in the scale of patient need at community level post hospital discharge, and with this knowledge came an increasing need for patient advocacy.
One such patient advocacy issue that occurred around this time was in relation to its heart failure patient community, regarding NIACs decision to offer two different levels of vaccine prioritisation to this population in Ireland based on age, which left the under 70s age group living with heart failure in Ireland at a lower level of vaccine priority, and therefore at greater risk of contracting Covid 19, not only because of the extra time period they had to wait to receive the vaccine, but also because many of this age group were cosharing households with younger cohorts who had returned to schools and colleges and therefore exposed them to further risk.
The campaign was a team effort between the organisation and the patients, and included media interviews at national and local level, conducted jointly by both organisation representatives and patients, lots of letter writing to Dept of Health, HSE and NIAC, lots of research and of course, lobbying politicians at both national level by the organisation and by patient’s at local TD level in their individual constituencies, resulting in multiple references to the issue being made in the Dail. The experience led to a belief by the organisation that embracing patients into patient advocacy campaigns going forward would improve the efficacy of patient advocacy efforts.
It was decided that the organisation should embark on designing a specific advocacy programme for patients that would recruit, train and support them in the area of advocacy, communications and lobbying, as well as offer them ongoing inclusivity in the patient advocacy agenda of the organisation.
Therefore, in early 2023, the Irish Heart Foundation, launched its advocacy programme for patients, which it called Patient Champions. In line with the organisation’s mission statement, to defend, empower and care for those affected by heart disease and stroke, the programme was to offer upskilling, ongoing support, opportunities and training in the area of advocacy, as well as peer advocacy support amongst the patient recruits themselves. In this way, it would offer opportunities for heart and stroke patients to not only feel empowered in their own lives, to be able to use their own skills and learn new skills, but to hopefully find purpose again. It would also introduce patients from all over the country to likeminded patients, journeying on a similar path, thereby providing a social support component which could help reduce the level of isolation felt by many.
The programme includes training in the area of media, digital marketing and politics, as well as opportunities for patient representation in both the organisation and in healthcare areas who seek heart or stroke patient participation with regards to policy co-design, feedback, or evaluations in the area of cardiovascular health. In addition, ongoing peer and organisation support is offered, via frequent online meetings and campaign opportunities.
The programme is free, online and accessible from anywhere in the Ireland, so logistically a possibility for patients who may have challenges travelling due to the limitations of their diagnosis, something which patients reported had frequently been overlooked by way of their being able to get involved in social or work opportunities at community level post diagnosis.
From an organisation perspective, having the patient in the room, is proving to be a very useful tool in advocacy. Already our first graduates have gone on to advocate in many ways, not just for themselves but for other heart and stroke survivors e.g. at an Oireachtas Health Committee on cardiovascular funding, in media awareness interviews in relation to their conditions, and they have recently lobbied hard to their local TD’s about the post Budget ‘24 announcement that the national stroke strategy would not be funded, which has helped the charity’s national call for a reversal of this decision.
And the Irish Heart Foundation’s Patient Champions’ programme is being viewed with interest at a European level, with the European Heart Network seeking its inclusion on the agenda for its annual workshop this May ‘24 in Amsterdam, to discuss the possibility of its take up by other heart foundation members in Europe.
Perhaps it is also worth mentioning that the programme itself is spearheaded by a heart patient, who works in the Irish Heart Foundation’s Patient Advocacy team.
Pauline O’Shea, Advocacy Campaign Manager with the Irish Heart Foundation explains; “I think patients in today’s world, feel like women did 100 years ago… invisible, unequal, lowly ranked, not at the table, more spoken about than to, overlooked, and often left feeling diminished.
“Developing Patient Champions, is an attempt to redress this, to empower, upskill, support & harness the patient experience and their own skills, to achieve better recognition, better representation, better conditions, better advocacy power and more equality in decision making, policy formation, policy design, implementation, evaluation and outcomes so that CVD patients can be better served in our society.
“Patient Champions is about helping develop a patient movement in cardiovascular healthcare in Ireland, that when combined with the Irish Heart Foundation can become a powerful force for good in the cardiovascular landscape.”
And what do the patients themselves who have gone through the programme say?
One Patient Champion graduate, Michael, a heart patient living in Cavan says… “I certainly would recommend that others join the programme and get involved. I believe the whole experience can benefit you personally, but you can also give a lot more to other people who do not have a voice.”
Another Patient Champion graduate, Meaghan, a stroke survivor living in Kerry says, “It’s been really helpful for me to get that formal training, to just gain more confidence, so that I can take on those different opportunities. So, I absolutely would recommend joining.”
If you know, or work with heart of stroke patients whom you think would enjoy joining the Patient Champions programme, please ask them to contact Pauline O’Shea on 087 381 0726, or they can apply directly online by emailing ihfvolunteer@ irishheart.ie with subject heading ‘Patient Champions’.
For anyone who would like to know more on this programme, including to watch a video with some of the Irish Heart Foundation’s recent Patient Champion graduates, please visit https://irishheart.ie/patientchampions/
For all other Irish Heart Foundation Patient Support Service offerings for heart and stroke patients, please go to https://irishheart.ie/ support-for-you/heart-supportservices/ or call the Nurse Support Line on 01 668 5001
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