In 2010, NICE released a guideline that recommended that a specialist should review patients with suspected heart failure within two weeks for the most urgent cases. Nevertheless, this recommendation has fallen on deaf ears, as patients are currently waiting up to twenty weeks for a specialist assessment.

An online petition to the House of Commons seeks to rectify this oversight through a change in the law; organised by Dr Fozia Ahmed, a consultant cardiologist based in Manchester, and Nick Hartshorne-Evans, CEO of The Pumping Marvellous Foundation.

Heart failure is a life-threatening disease that presently affects 26 million people worldwide, and approximately 1 million people in the UK. However, it is also often ignored in health policy and is supplanted in the public consciousness by better-known diseases such as cancer and heart attack.

Early diagnosis of heart failure and the subsequent initiation of treatment are proven to improve prognosis and reduce the risk of hospitalisation and death – although far too often, diagnosis happens too late.

Why have the NICE guidelines not been implemented in over a decade?

Dr Ahmed and Mr Hartshorne-Evans both spoke to GM journal about the 2010 NICE recommendation, why it has not been enacted for over a decade, the relative omission of heart failure from public policy, and why a change in the law is necessary to bring about real change.

Dr Ahmed revealed that the inspiration behind the petition came from an unlikely source, a Capital FM news story about a petition against the international puppy trade, and thought that if that story could receive over 100 thousand signatures, then meaningful change could also happen with this long belated reform of the referral process.

She explained: “We're still no closer to meeting the first recommendation in the NICE quality standards ten years after the guidelines were introduced. After the guidelines were published we felt they would be implemented and change would start to happen. However, change is proving to be too slow. Guideline recommendations are failing to impact clinical practice in the way that would would have hoped and there comes a point when you have to acknowledge that without the correct legal framework in place the problem will persist.”

Mr Hartshorne-Evans also shared this position. "The situation has become so acute, being the chief executive for a UK heart failure charity what I see every day on patient forums are concerns about delays in diagnosis, in part due to delays in getting people to the specialist,” he said.

One of the reasons why the NICE recommendation has not been implemented sooner according to Mr Hartshorne-Evans could be a historic non-focus on heart failure: “If you look at the [NHS] 10-year plan, of 170 pages in the document, heart failure is mentioned only briefly. So why is that?”

Why is a change in the law necessary to treat heart failure as seriously as cancer?

Dr Ahmed commented that she suspects that in some areas of the UK they have achieved the two-week specialist review for acute heart failure, although she said data suggests that there is considerable room for improvement. And that previous legal imperatives like the one tabled for cancer can be learnt from, and can be used to support hospitals to put in place the necessary infrastructure to make sure that the system works.

She added: “We can learn from other successful referral frameworks like the HSC205 to legislate for the same legal precedent and right for heart failure patients – I feel it may be the only way to bring about meaningful and enduring change.”

Both organisers pointed to nationwide inconsistencies of care, creating geographic disparities and inequities in the timely treatment of heart failure. Dr Ahmed said that she works in an area of the country where the population have some of the worst healthcare outcomes for cardiovascular disease, which often is compounded with issues of poverty, and that underlies structural problems in getting patients reviewed quickly.

“At the moment there is no mandate outside of cancer services, for urgent heart failure referrals to be reviewed within two weeks. There is no requirement to change the status quo and a lack of resource to support improvements. The absence of a community heart failure nurses conflates the problem," she said.

There are additional established challenges in the referral process to receive a specialist assessment. A study from last year showed that women wait significantly longer to be diagnosed with heart failure and are 96% more likely to receive an incorrect diagnosis than men. As far too often, women's symptoms are misdiagnosed as a psychological condition, asthma, post-menopausal symptoms, or as acid reflux.

Getting a diagnosis of heart failure is also particularly relevant to the current climate of the pandemic, as Dr Ahmed described: “The main problem poses by Covid for heart failure patients who are awaiting a diagnosis is that, in certain cases, a diagnosis of heart failure may place them in the clinically extremely vulnerable group of patients, at high risk of adverse outcomes in the event of Covid infection. Meaning that it is important that they shield appropriately and are prioritised for vaccination in line with government guidelines.”

As for the future, both organisers envisage a multi-faceted approach to leverage a change in the law – asides from just the online petition. Mr Hartshorne-Evans explained that many different stakeholders need to become involved in the movement if it is going to be successful: “We need to create the movement; this is a common goal that everybody from the patient and the NHS, to charities, professional organisations and industry partners can support. A timely diagnosis benefits the whole healthcare system, but perhaps most importantly the biggest beneficiary is the patient.”

You can sign the online petition to the House of Commons here