BBCTwin sisters living with heart failure are calling for an end to the postcode lottery system for accessing services to treat heart failure.
Nicole and Farrah live 52 miles from each other but are enrolled in different health trusts.
Nicole has benefited from “life-changing” cardiac rehabilitation, but Farrah said she was discharged from the hospital eight months after her diagnosis without any rehabilitation provided.
She told BBC News NI she was “jealous, angry, upset and scared” of not receiving the same treatment as her twin sister.
Health trusts in Northern Ireland each set their own standards for when cardiac rehabilitation sessions are provided.
“I just thought I was going to die.”
There are many similarities in the lives of identical twins Nicole and Farrah. The same expression crosses their faces, they have the same shining and bright eyes.
They both also have acute heart failure, a condition in which the heart is unable to pump blood properly throughout the body.
But what makes their stories different is that they are treated under different medical trusts, so they cannot both receive the same treatment.
Although the twins have great praise for the doctors and nurses who care for them, they are critical of a system that does not provide equal access to services.
Nicole, who lives in the Southern Trust area, was diagnosed in January last year after months of seeing doctors to find out why she was short of breath. She was “stunned” to hear the news.
“I thought I was going to die,” she says.
A few months later, in March 2023, her twin sister Farah was also diagnosed in the Northern Trust area.
She is receiving medication with the help of her GP and consultant, but has been discharged from cardiac care.
“I still live in fear.”
The twins used to be very active, going hiking and kayaking, but now Nicole said even going from the car to the store can leave her out of breath.
During her cardiac rehabilitation sessions, she learns gentle exercise, advice on pacing, and how to cope emotionally with her diagnosis.
“It gave me my life back,” she says.
“It gave me my confidence back.”
Meanwhile, Farah said: “There was no cardiac rehabilitation offered at the Northern Trust. I have fought for everything and I didn't get the same help as Nicole.”
When asked how she felt about her sister having access to services that she couldn't, she said: “I'm very angry, scared and upset because I'm still living in fear.”
“I'm afraid to go to sleep if I don't wake up again.”
She says she doesn't know her limits and doesn't know what exercises she's capable of because she didn't have professional help to tell her, “You can try a little harder,” or “No, that's too much.” .
She says a cardiac rehab patient like her sister would be able to supervise and supervise her in a safe environment.
The sisters also want to increase awareness of the symptoms of heart failure and invest in ensuring those affected have access to ongoing care.
Differences between trusts
Some trusts offer cardiac rehabilitation to all heart failure patients, while others have criteria for accessing it.
The Northern Trust said it is currently offering the drug to heart failure patients who have developed an ischemic phenomenon, a disruption of blood flow to the heart due to coronary artery disease.
They said they could not comment on individual cases but were aware of the “significant demand” for heart failure nurse clinics and were already implementing strategies to reduce waiting lists.
The BBC asked trusts on what basis cardiac rehabilitation is provided to people with heart failure.
South – All heart failure patients are eligible for cardiac rehabilitation South – All heart failure patients are eligible for cardiac rehabilitation North – Currently offering cardiac rehabilitation to heart failure patients who have had an ischemic event West – Recent Cardiac rehabilitation services are provided for all patients suffering from heart failure as a result of a heart attack. Heart failure patients who have not had a heart attack will be offered cardiac rehabilitation on a case-by-case basis Belfast – Heart failure patients will be offered cardiac rehabilitation if their heart failure is a direct result of a heart attack
The Department of Health says it recognizes the importance of providing high standards, fair and timely access to cardiac rehabilitation across trusts.
It said it was consulting widely with key stakeholders across all trusts to “clearly understand the unmet needs of these services and develop recommendations that lead to long-term sustainable solutions”. said.
A regional approach is “more effective”
Dr Patricia Campbell, Northern Ireland's heart failure leader, says cardiac rehabilitation is “as effective as any other drug” when it comes to helping patients with the condition.
In Northern Ireland, more women die from cardiovascular disease than cancer, and heart failure is the least well-known of these diseases.
Dr Campbell said there were around 22,000 people in Northern Ireland living with heart failure and it was likely that many more were living with the condition without knowing it.
She recommends anyone experiencing shortness of breath, fatigue, or fluid retention to visit their GP for a simple blood test (BNP).
Acknowledging each trust's different approach, she said: “If you take a regional approach to things, everything will work out.”
“We have an amazing group of heart failure nurses in Northern Ireland who are internationally recognized for their work, but many services are at capacity.”
