Heart Failure: Twin Sisters Face Disparate Treatment Based on Location

Two twin sisters, both affected by heart failure, are advocating for the elimination of what they describe as a “postcode lottery” in the provision of services for their illness. Nicole and Farrah reside 32 miles apart, falling under the jurisdiction of separate health trusts. Nicole has experienced the benefits of “life-changing” cardiac rehabilitation, whereas Farrah reports being discharged eight months post-diagnosis without any rehabilitation services being provided. Speaking to BBC News NI, Farrah expressed feeling “jealous, angry, upset and scared” due to her inability to access the same treatment as her twin sister. In Northern Ireland, individual health trusts establish their distinct criteria for the provision of cardiac rehabilitation sessions. As identical twins, Nicole and Farrah share numerous life similarities, including identical facial expressions and similar sparkling, bright eyes. Both also suffer from acute heart failure, a condition characterized by the heart’s inability to adequately circulate blood throughout the body. However, their experiences diverge concerning access to treatment, as they are receiving care from different health trusts, preventing them from accessing identical services. While the sisters commend the doctors and nurses providing their care, they criticize a system that fails to ensure equitable access to services. Nicole, residing within a Southern Trust area, received her diagnosis in January last year, following months of medical consultations to determine the cause of her breathlessness. She stated the news left her “petrified,” adding, “I just thought I was dying.” Her twin sister, Farrah, was also diagnosed a few months later, in March 2023, within a Northern Trust area. Farrah is currently on medication, managed by her GP and a consultant, but reports having been discharged from specialist cardiac nursing care. Prior to their diagnoses, both twins maintained active lifestyles, engaging in activities such as hiking and kayaking. However, Nicole now states that even carrying groceries from her car can cause breathlessness. During cardiac rehabilitation sessions, she acquires knowledge on gentle exercise, pacing strategies, and coping with the emotional impact of her diagnosis. Nicole affirms, “It has given me my life back,” and “It has given me my confidence back.” Conversely, Farrah states: “Cardiac rehab was not offered to me in the Northern Trust – I’ve fought for everything and not got the same help as Nicole did.” When questioned about her feelings regarding her sister’s access to services that she cannot obtain, Farrah responded, “very angry, scared and upset because I still live in fear,” adding, “I’m scared to go to sleep in case I don’t wake up again.” Farrah expressed uncertainty about appropriate exercise routines, noting she lacks knowledge of her physical limits due to the absence of specialist guidance, such as someone advising, “you can push yourself a bit harder” or “oh no, that’s too much.” She believes that cardiac rehabilitation, similar to her sister’s, would provide supervision and oversight within a secure setting. The sisters also advocate for increased awareness of heart failure symptoms and greater investment to ensure continuity of care for those affected. While some trusts provide cardiac rehabilitation to all heart failure patients, others impose specific criteria for access. The Northern Trust states that it currently extends cardiac rehabilitation to heart failure patients who have experienced an ischaemic event, defined as a disruption of blood flow to the heart resulting from coronary artery disease. While declining to comment on specific cases, the Trust acknowledges “significant demands” on its heart failure nurse clinic and reports implementing strategies that have already reduced waiting lists. The BBC inquired with each trust regarding the criteria for offering cardiac rehabilitation to heart failure patients. The Department of Health affirmed its recognition of the importance of providing high-standard, equitable, and timely access to cardiac rehabilitation across all Trusts. It indicated that it is engaged in extensive consultation with key stakeholders throughout all Trusts to “gain a clear understanding of the unmet needs of these services and form recommendations, which lead to long-term sustainable solutions.” Dr. Patricia Campbell, the Northern Ireland lead for heart failure, stated that cardiac rehabilitation is “as effective as any medicines” in assisting patients with the condition. In Northern Ireland, cardiovascular diseases account for more female deaths than cancer, with heart failure being the least recognized among these conditions. Dr. Campbell noted that approximately 22,000 individuals in Northern Ireland are living with heart failure, and many more may have the condition unknowingly. She advises anyone experiencing breathlessness, fatigue, or fluid retention to consult their GP for a straightforward blood test (BNP). Acknowledging the varied approaches across trusts, she commented: “Everything works better when we have a regional approach to things.” She further added, “We have amazing heart failure nurses in Northern Ireland who are recognised internationally for the work they do, but lots of the services are at capacity.”