Twins with heart failure call for end to healthcare 'lottery'

Being identical twins, there are many similarities in Nicole and Farrah's lives. The same expressions cross their faces and they have similar sparkling, bright eyes.

They also both have acute heart failure, a condition where the heart cannot pump blood around the body properly.

But where their stories differ is that they cannot both access the same treatment, because they are being treated under different health trusts.

Nicole, who lives in a Southern Trust area, was diagnosed in January last year, after months of trips back and forth to doctors to find out why she was so breathless. The news left her "petrified".

"I just thought I was dying," she says.

A few months later, in March 2023, her twin sister Farrah was diagnosed too - in a Northern Trust area.

She is on medications with the help of her GP and a consultant but says she has been discharged from speciality cardiac nursing.

Both the twins were active beforehand, going hiking and kayaking, but Nicole now says that even getting her shopping in from the car can leave her breathless.

At cardiac rehab sessions, she learns gentle exercise, advice on pacing and how to deal with the emotional side of the diagnosis.

"It has given me my life back," she says.

"It has given me my confidence back."

Farrah, on the other hand, says: "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."

Asked how she feels that her sister can access services that she can’t, Farrah says "very angry, scared and upset because I still live in fear".

"I’m scared to go to sleep in case I don’t wake up again."

She says she doesn’t know what exercise she can do, as she does not know her limits as she has not had that specialist help of someone saying, "you can push yourself a bit harder" or "oh no, that’s too much".

She says having cardiac rehab like her sister would allow for supervision and oversight in a safe environment.

The sisters would also like to see better awareness around heart failure symptoms and investment to allow those affected to get continuity of care.

The Department of Health says it recognises the importance of delivering high standard, equitable and timely access to cardiac rehabilitation across the Trusts.

It said it is consulting widely with key stakeholders across 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, a consultant cardiologist at the Southern Trust and the Northern Ireland lead for heart failure, says cardiac rehab is "as effective as any medicines" when helping patients with the condition.

More women in Northern Ireland die from cardiovascular diseases than from cancer, with heart failure the least well known of those diseases.

Dr Campbell says there are around 22,000 people living in Northern Ireland with heart failure and there are likely to be many people out there living with the condition without knowing it. She urges anyone experiencing breathlessness, fatigue or fluid retention to visit their GP for a simple blood test (BNP).

Acknowledging the different approaches in each trust she says: "Everything works better when we have a regional approach to things."

"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."