Late diagnosis and poor long-term management risk overwhelming regions of the NHS struggling to cope with the growing burden of the disease, warns the Alliance for Heart Failure.

People in the parts of England hardest hit by heart failure are dying following an emergency admission at twice the rate of those in the least affected areas, according to a new report from the Alliance for Heart Failure.

The report’s Heart Failure Burden Index, which ranks all 42 Integrated Care Boards on prevalence, emergency admissions, readmissions, mortality and specialist nursing capacity, finds that the ten highest-burden areas are concentrated in the North and Midlands, with NHS South Yorkshire ranked the highest in the country.

Heart failure is one of the fastest-growing major health conditions in England. A 2023 report by the Health Foundation stated that cases of heart failure were set to increase by 92% between 2019 and 2040, with the disease forecast to rise faster than both cancer and dementia.

Heart failure: an unsustainable national health emergency seeks to establish in which regions of the country the growing burden of the disease is most acutely felt, with the report analysing Hospital Episode Statistics and the National Heart Failure Audit at ICB level between 2021 and 2025.

It has found that in the last four years, visits to a hospital from heart failure patients have increased by one fifth to 817,000. Some areas of England now have nearly twice the burden as others, with Lancashire, Cheshire, Merseyside, and Cornwall having the highest rate of heart failure patients with a hospital visit per 100,000 of their population.

The report also found that one in seven heart failure patients – roughly 116,000 people – are not recorded on a GP register and risk missing out on receiving the appropriate long term management of their condition. In some areas, this rises to as many as three in ten patients.

Specialist heart failure nurses, who according to NICE guidance should coordinate every patient’s care, are also unevenly available. Referral to a specialist nurse on discharge averages 61% across England but is as low as 34% in some areas.

Evidence cited in the report shows specialist nurse-led follow-up can cut all-cause admissions by around 35% and highlights the gap in access as an urgent priority across the NHS.

ICBs, the organisations which manage local NHS finances, now spend around 5% of their hospital budget on heart failure. Between 2021 and 2025, emergency heart failure admissions and readmissions cost the NHS in England close to £2 billion.

No clear strategic direction on growing burden of heart failure

The report’s Heart Failure Index seeks to highlight the regional variation in heart failure outcomes, with its recommendations aimed at supporting local systems struggling to cope with the higher burden of the disease due to deprivation, ageing populations and poor community access to specialist care.

As the NHS reforms and restructures around the abolition of NHS England and the merging of ICBs, the Alliance for Heart Failure’s network of clinicians and patient advocates has warned that there is no clear strategic direction when it comes to dealing with the regions hardest hit by the disease.

In light of this, the group states that the level of variation found in its report must be addressed with a national heart failure plan, one modelled on the success of the 2015 Independent Cancer Taskforce and its “Cancer Alliances” in order to support areas of the NHS struggling to manage the growing burden of disease.

Co-Chair of the Alliance for Heart Failure, Katharine McIntosh, said:

“Heart failure cases in England are set to double by 2040, and as our report shows, the NHS is simply not prepared. This report gives an early warning of where this growing burden is most acutely felt, with late diagnosis and insufficient community management leading to poor outcomes for patients and an unsustainable burden on secondary care.

“For the millions living with – or at risk of – heart failure, your postcode too often determines the difference between life and death, with people in some areas dying after an emergency admission at twice the rate of others

“The good news is in pockets of the country we have excellent models of care, where timely diagnosis and access to the right treatment and rehabilitation keep patients out of hospital and ensures they can live productive and fulfilling lives.

“However, history tells us that without a coordinated national effort, like the one we saw with cancer in 2015, we are unlikely to drive the level of improvement needed to prevent heart failure from overwhelming the NHS.”

Call for a national heart failure plan

The Alliance for Heart Failure is calling on the Department of Health and Social Care to:

  • Require every ICB to commission heart failure services against its own burden data, with accountability held through the NHS mandate and Oversight Framework;
  • Build community heart failure capacity – specialist nurses and the wider multidisciplinary workforce – starting in the highest-burden areas, underpinned by a national baseline census of current provision;
  • Establish a national heart failure plan and dedicated national leadership, modelled on the 2015 Independent Cancer Taskforce, with a consistent diagnostic and referral pathway and annual public reporting on variation.