Using my experience to support patients with coronary heart disease
Lucinda McNerney, Public and Patient Interest (PPI) representative on the Irish Heart Attack Audit at NOCA talks about her role with the Irish Heart Foundation and more recently at NOCA
My role in the Irish Heart Foundation (IHF) is as the patient services development manager – I work as part of a team supporting Heart patients who have experienced a heart event/diagnosis.
I originally volunteered with the IHF for over 12 years in the setting up of patient support for those living with Long QT Syndrome (LQTS). LQTS is an inherited condition. It is a disturbance of the heart’s electrical system which causes heart rhythm problems. This looked at the importance of support, awareness, and advocacy for this cohort of patients.
I was diagnosed with this condition at the age of 18 after having a cardiac arrest. I was treated with a pacemaker and betablocker medication and I am now over 30 years down the road. It is an inherited cardiac condition and so two of my three children have inherited the gene and attend the cardiology service both in Children’s Health Ireland at Crumlin and in Cork University Hospital. I am passionate about patient support & advocacy. It is a journey once you have had an event and your life has taken a different path to maybe the one you had planned both for you and your family. In patient advocacy, we worked closely with healthcare professionals involved in this area via a council for the prevention of sudden cardiac death. This partnership has proved a positive and practical way of looking at pathways of care and so patients living well with their condition.
I work now with the IHF in developing these supports. Since Covid, we developed online supports so anyone who has had an event or diagnosis can access the following
- Zoom – We run monthly zoom meetings on topics such as medication, diet, exercise, psychological impact etc.
- Facebook Page – Heart Support Network, a private Facebook page where people will have access to others on a similar journey
- Nurse line – Our nurse line is available on 01 6685001 for any medical queries
- Counselling – members of the IHF support groups can access up to 6 free sessions of counselling
- Peer to Peer – We have patients available by phone if someone would like to speak to someone on a similar journey.
The main message being they are not alone on this journey. There are supports available within the community that will help in the Self-Management of their condition so the person can live well in all aspects of their life. For further information, you can email email@example.com or phone 01 6685001
I am delighted to be involved in the Irish Heart Attack Audit as a PPI. I am using my experience as a patient to advocate for all patients.