The Heart Failure Challenge

Heart failure affects nearly one million people in the UK,¹⁰ but the road to diagnosis is often lengthy and convoluted. The vast majority are only diagnosed after a hospital admission¹¹ – even though many would have previously seen their GP.¹⁰ Accounting for 862,470 bed days in 2018/19² – the equivalent of 2,362 years – with admissions costing nearly £400m,² the current demand on secondary care, and delays in heart failure diagnoses, are associated with high system costs, poor outcomes, and avoidable mortality.¹²

It is this stark outlook which prompted global healthcare firm Roche Diagnostics Limited and the Pumping Marvellous Foundation, a leading heart failure charity, to commission this report, which aims to better understand the patient experience and identify the opportunities for earlier diagnosis.

To assess the heart failure diagnostic pathway, we developed a methodology that encompasses both qualitative and quantitative research. This included: a survey conducted by Censuswide in which 625 participants shared insights about their lived experience of a heart failure diagnosis, the effect it has had on them and their experience of living with heart failure during COVID-19; interviews with people living with heart failure; and Hospital Episode Statistics (HES) covering all hospital activity relating to seven heart failure ICD-10 codes – a system used to classify and code all diagnoses, symptoms and procedures recorded in conjunction with hospital care – captured as a primary diagnosis between April 2018 and March 2019.

Our results make clear that improving outcomes, patient experience and helping to deliver NHS sustainability are all rooted in diagnosing patients earlier – with the greatest opportunities to do so in primary care. However, with almost 50% of patients diagnosed in hospital being detected after an emergency admission,¹ delayed diagnosis mean outcomes were poorer. It also means patient experience is lengthy and traumatic, which negatively impacts quality of life. Mortality rates for patients with acute heart failure remain at an all-time high of 10%.¹³

Annette’s story

Annette, from East Devon, was 53 years old when she was diagnosed, having waited two years and eight months to be told she has heart failure. Before this she had to endure multiple misdiagnoses while still experiencing symptoms which led to problems at work, and affected her ability to feel independent, finding herself having to sleep downstairs because she was too tired to climb the stairs.

“The delay in the diagnosis caused me to be unreliable at work, which I hadn't been previously, and also to lose my independence,” she says. “Whereas previously I was cycling 10 miles a day, now I was having to rely on other people to pick me up for work. For my family, it was extremely frustrating - I had grandchildren I couldn’t pick up. I had to start sleeping downstairs; I couldn't get upstairs because I was so tired, having to rely on other people and eventually having to give up work.”

In addition to the personal cost, delays to diagnosis are costly to the NHS. Heart failure accounts for approximately 2% of the total NHS budget and 5% of unplanned admissions per year.¹⁴ Our research found on average, a heart failure hospital admission costs £3,690.17,¹ a significant cost considering that approximately three quarters (74.8%) of heart failure patients who were admitted in 2018/19 received their initial diagnosis in hospital.¹

However, with the right tools heart failure can be diagnosed earlier, enabling the outcomes and experience of patients to be significantly improved. Greater uptake of diagnostic tools in primary care, such as natriuretic peptide testing (NT-proBNP), could and should drive earlier diagnosis and reduce the costs associated with planned and unplanned admissions.¹⁵

Action now needs to be taken by clinicians, commissioners and the public to ensure that heart failure diagnosis is swifter, more efficient and consistent across the UK. This is even more urgent in the context of COVID-19, as patients with heart failure are at an increased risk of health complications due to an infection, with potentially worse outcomes as a result.¹⁶ The timely intervention of specialist heart failure services is therefore critical to support patients during the current crisis and beyond.