New research reveals that delays in heart valve disease diagnosis are disproportionately affecting those living in the most deprived areas of the UK.
A new survey of over 300 Heart Valve Disease (HVD) patients has shown that three-quarters of respondents in the lowest income decile said their diagnosis had been delayed (with just 1 in 4 reporting they were diagnosed without delay). By contrast those living in the least deprived decile were unlikely to experience delays, only 1 in 5 reported delays to diagnosis (most (64%) were diagnosed without delay).
The research was commissioned by Heart Valve Voice, a UK charity that has long campaigned to improve diagnosis and treatment of valve disease, with a particular focus on tackling inequality through policy reform.
Executive Director Wil Woan comments: “Many patients who took part in the survey experienced a diagnostic delay, but when we look at the most deprived areas it’s around half (47%) while for the least deprived areas it’s lower (34%). When we compare the decile of highest deprivation to the decile of lowest deprivation we see a troubling disparity: 75% of those in the most deprived decile experienced a delay vs. just 20.5% in the least deprived. The findings have prompted us to renew calls for targeted action to address inequalities in access to Valve Disease diagnosis treatment.”
“In areas of social deprivation many people don’t know anything about heart valve disease and certainly don’t know the symptoms. Moreover, they often don’t present to their GP or follow conventional treatment pathways. Valve disease symptoms often creep in slowly and it’s easy for patients to brush them off or put them down to normal ageing, sometimes until they are seriously ill and end up presenting in A&E,” explains Professor Phil MacCarthy, an Interventional Cardiologist based at Kings College Hospital in Denmark Hill, London.
HVD occurs when one or more of the heart’s valves fails to open or close properly, forcing the heart to work harder to pump blood. It most commonly affects the aortic and mitral valves and can lead to serious complications if left untreated. Once the disease is severe, patients experience worsening symptoms (like breathlessness, fatigue, dizziness, chest pain and palpitations) and timely intervention is critical.
Prof MacCarthy adds: “Even when patients do seek help, we have a huge issue in how overstretched GPs in South East London are. Our GPs see about double the number of patients than those in affluent areas – one surgery in Peckham has over 10,000 patients per full time GP, which is almost five times the national average. This shortage in GPs and appointment pressures means patients may wait weeks to be seen. And when they finally get through the door, the consultation is so rushed that the chance to listen for a murmur with a stethoscope is often missed. That’s a critical moment lost.”
Diagnosis typically begins in primary care (where a GP may detect a heart murmur during a stethoscope check) and the person is referred for the key diagnostic test, the echocardiogram (an ultrasound scan of the heart). If valve disease is found, a specialist (such as an Interventional Cardiologist) may recommend either transcatheter aortic valve implantation (TAVI) or surgical aortic valve replacement (SAVR), depending on the patient’s condition. Recognising the urgency of care, the NHS has recently introduced a 8-week fast-track pathway for patients with severe aortic stenosis, the deadliest form of valve disease, aiming to accelerate diagnosis and access to life-saving treatment.
For most patients, delayed diagnosis was due to issues arising in primary care – the most common reason cited was GPs not spotting their symptoms (14%). Symptoms not taken seriously (9%), symptoms misdiagnosed (9%) or needing to see the GP multiple times (9%) were also common challenges. In a minority of cases, it was the patient themselves not taking symptoms seriously which contributed to their delay (6%).
However secondary care also presented challenges in many cases, with long delays to diagnostics (like echocardiogram) or other tests reported. Delayed diagnosis of heart valve disease carries significant consequences: not only for patients, but for the wider healthcare system and the economy. When asked about the greatest impact of their delay, a quarter of patients cited worsening symptoms, while 15% pointed to the toll on their mental health. 7% said it had forced them to take extended time off work. The strain on NHS resources was also evident. Around a third of patients reported that delays had led to increased use of healthcare services, with 11% requiring frequent GP appointments, 9% making repeated visits to A&E, and a further 11% needing emergency ambulance transport to A&E.
Woan, of Heart Valve Voice, adds: “These findings show that delays cause avoidable harm, both physical and emotional, and place unnecessary pressure on frontline services. Ultimately, these delays can lead to poorer outcomes for patients, and, in some cases, deaths. Our charity is also concerned about the delays patients are experiencing after diagnosis."
39% patients experienced delays accessing treatment after being diagnosed, with NHS waiting lists given as the most common reason for about half of these patients (49%). Staff shortages and limited access to specialists were also highlighted.
“Our hospital serves a large catchment area, spanning much of the North West, Merseyside, Lancashire and even North Wales and the Isle of Mann – which all have areas of significant deprivation and higher rates of cardiovascular disease,” explains Dr Clare Appleby, Consultant Cardiologist at Liverpool Heart and Chest Hospital and Clinical Lead for Intervention and TAVI, “At our hospital we see a huge variation in the referral numbers of TAVI patients from the most deprived areas compared to the most affluent – it can be as much as five-fold difference. The causes of this disparity are varied and complex – as well as patient’s factors, it might be due to staff shortages, more vacant posts, lower access to diagnostics at the hospital, healthcare professionals that are less familiar with new guidance or referral patterns or that the hospital in one area is serving bigger populations with significant social deprivation. These disparities warrant further investigation to help guide us on how we can improve equity for patients.”
The Heart Valve Voice Patient Experience Survey was published to coincide with International Heart Valve Disease Awareness Week, an annual global initiative to raise awareness about valve disease that takes place on the third week of September. Visit www.heartvalvevoice.com to find out more.
References
1. Heart Valve Voice 2025 Patient Experience Survey – Survey of 333 patients diagnosed with Heart Valve Disease in the UK (Data on file)
2. Heart Valve Voice – Call to action 2025 Valve Week Calls to Action - Heart Valve Voice
3. NHS Data – August 2025 – Patients registered at a GP Practice: https://app.powerbi.com/viewr=eyJrIjoiNGZhOTc3ZGQtNmUwOS00M2M3LWFlZTItZjliMzNlYjExNmM5IiwidCI6IjM3YzM1NGIyLTg1YjAtNDdmNS1iMjIyLTA3YjQ4ZDc3NGVlMyJ9
4. BCIS UK TAVI Audit 2022-23
