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Freedom from Failure – the F Word

Raising awareness of heart failure amongst patients

Heart failure is an insidious condition characterised by symptoms including Fatigue, Fluid build-up, often noticeable in the ankles and Fighting for breath. It is caused by a structural and or functional abnormality in the heart which leads to reduced cardiac output[i]. There are approximately 1 million people with heart failure in the UK[ii] and a further 200,000 people are newly diagnosed each year. For half of those with the condition, heart failure is terminal with death occurring within 2-5 years of diagnosis. For many there are delays in diagnosis which is taking over 12 months (a figure targeted by NHS England for reduction by half). And, for those who unwittingly group heart failure into the category of ‘heart problems’ as a cause of death, it is the little known true endpoint for almost all cardiovascular disease. The risk of death from heart failure is higher than for some of the most common cancers[iii].

There is a growing school of thought that heart failure should be recognised as a disease as malignant as cancer[iv] and treated with the same urgency. We have seen that patients with existing heart failure are at higher risk of developing complications and death from the CoViD-19 infection and we have a real concern over the direct and indirect toll of the CoViD-19 pandemic with escalation of heart failure cases and those yet to be diagnosed over the coming months[v]. However, whilst it remains a burdensome, debilitating condition, with appropriate management, it is possible for people to live well with heart failure and outcomes can be improved through earlier diagnosis and treatment with guideline recommended therapies[vi]. This is an important aim of the care we provide as Heart Failure Specialists. Earlier detection, diagnosis and treatment of those with heart failure as well as empowerment of patients to self-manage will improve outcomes for people living with heart failure. One of the keys to early detection is self-recognition of the symptoms and seeking medical help. Use of the blood test NT-pro BNP in General Practice is another key step as it indicates if symptoms are likely to be due to heart failure and how urgently a patient may then need referral to a Heart Failure Specialist. Heart failure does not discriminate for creed, ethnicity, economic status or geography and rarely exists in isolation. People with heart failure often have other problems such as diabetes and kidney disease and require an integrated approach to their care with robust care pathways to meet their needs from diagnosis through to end of life. The development of new classes of medicines for the treatment of both heart failure and diabetes together with established therapies offers an opportunity for a more holistic approach to treatment and improved life quality and quantity for those living with heart failure.

For the British Society for Heart Failure (BSH), the professional association for heart failure care in the UK, a key consideration for NHS England’s new Integrated Care Systems will be how to best support and ensure integration of care for the patient with heart failure from detection to death. This will require link up of data and bridging of the interface between primary, secondary, tertiary care and community; facilitation and improvement of communication channels across the care settings, establishment of robust pathways and specialist multi-disciplinary teams (MDT) and ensuring every patient has a care plan that has been led and informed by a Heart Failure Specialist. The BSH also recognises that a whole new level of public and community awareness and recognition of heart failure and its common symptoms (fluid build-up, fatigue and fighting for breath), is needed to help people with heart failure and to help the newly evolving health system. With the recently announced 1.7 million increase in numbers shielding, society will remain in hospital-avoidance mind-set for a while yet so we need people to self-identify heart failure and seek help, in some cases urgently, to reduce existent pressures such as emergency admissions due to heart failure. Currently, 80% of heart failure is diagnosed in hospital despite 40% having symptoms that should have triggered an earlier assessment in primary care[vii]. This has to change. We all have to pull together. But how much do members of the public really know about the health of their heart? How much do they know about heart failure? After all, that unfortunate elderly neighbour with fluid filled ankles had ‘a heart condition’ or a ‘heart problem’ which is an inevitable consequence of ageing, right? But you know it was most likely heart failure.

When asked to identify heart failure from a list of definitions of multiple cardiovascular diseases, over half (55%) of the general public were not able to do so, according to a recent survey. Among those who claimed to know at least ‘a fair amount’ about heart failure, the result was similar – 48% of those respondents were unable to recognise the definition1. To change this is imperative. So, the BSH is launching a campaign during Heart Failure Awareness Week, 10-16 May 2021. Entitled ‘Freedom from failure – the F Word’. We need to educate the public to recognise the symptoms of heart failure, whether their own, a family member or that elderly neighbour and to seek help, get diagnosed and on to treatment early to be able to live well, live longer and stay out of hospital. We need to talk about how it is possible to be free of heart failure symptoms with earlier diagnosis and optimised management of heart failure in a setting closer to home to improve outcomes. And we need to do this collectively.

The cost of heart failure:

  • Despite the 2010 NICE guidance, 1/5 patients are not being offered a simple diagnostic blood testfor heart failure at any point during their diagnosis
  • 80% of heart failure is diagnosed in hospital - 40% had symptoms that should have triggered an earlier assessment in primary care[viii]
  • Survival and outcomes of people with heart failure admitted to hospital around the time of diagnosis was significantly worse than in those not requiring hospital admission[ix]
  • Hospital admissions and the management of heart failure accounts for 2% of the entire NHS budget (around £2bn) - 70% of which is spent on emergency hospital admissions
  • Heart failure accounts for a total of 1 million inpatient bed days (2% of all NHS hospital bed occupancy[x])

Impact of CoViD-19 on those with heart failure:

  • Patients with heart failure nearly double their risk of dying if they get CoViD-19[xi]
  • The CoViD-19 pandemic is causing disruption to heart failure care with 4/10 patients having had a heart failure appointment cancelled and 1/3 avoiding going to the hospital
The risk of complications from heart failure outweighs the risk of dying from CoViD-19

For more information please visit:

Carys Barton, RN MSc., Heart Failure Nurse Consultant, Imperial College Healthcare NHS Trust. Chair of the British Society for Heart Failure Nurse Forum.


[i] accessed 11Apr21

[ii],age%20at%20diagnosis%20is%2077 accessed 11Apr21


[iv] accessed 11Apr21

[v] accessed 11Apr21

[vi] accessed 11Apr21

[vii] accessed 11Apr21

[viii] accessed 11Apr21

[ix] accessed 11Apr21

[x] accessed 11Apr21

[xi] accessed 11Apr21