Heart Valve Voice calls for NICE heart valve disease guidelines

On Tuesday 1 November, UK charity Heart Valve Voice launched its report, ‘Towards a Heart Healthy Future: a 2020 Vision for Heart Valve Disease’ at a parliamentary event attended by 80 MPs, clinicians and patients across the country.

The report sets out recommendations to prioritise the development of NICE guidelines to ensure that people living with heart valve disease receive a timely diagnosis and have equal opportunity to access effective and appropriate treatment for the condition, regardless of where they live.


The charity’s Patient Action Group also met for the first time to discuss the roll-out of several grassroots activities to raise awareness of the disease across the UK.

Heart valve disease is on the rise in the UK, with prevalence expected to more than double by 2056.i The condition is also under-diagnosed for several reasons; symptoms, such as shortness of breath, fatigue, dizziness and chest pain, often resemble the natural ageing process, so may be missed by patients and GPs. In addition, a large proportion of over 60s say they are not regularly checked with a stethoscope during routine consultations (despite this being the easiest way to detect heart valve disease). ii

“My condition was missed and almost cost me my life. Much more needs to be done to ensure people living with heart valve disease receive a timely diagnosis via a simple stethoscope check from their doctor. As a charity, we are working hard with patients, doctors and policy makers to improve the quality and longevity of people’s lives. This would ensure patients have the best chance of being diagnosed early and receiving appropriate treatment no matter where they live in the UK,” commented Mike Higginbottom, Chair of Heart Valve Voice Patient Action Group and heart valve disease patient.

MR Photography_Heart Valve Voice PAG_01112016-132

The Charity’s Patient Action Group, chaired by trustee and patient, Mike Higginbottom

There are also persistent inequities in access to treatment across the UK, despite benefits for patients, the NHS and the wider economy of the optimal treatment of heart valve disease. Where a patient lives affects their treatment, so whilst some patients are able to access the best possible treatment for their condition, many others are missing out.iii

The charity’s report includes several recommendations to combat this growing issue, including: the introduction of targeted education and awareness-raising campaigns for GPs and the public, routine use of the stethoscope in over 65s, the development of NICE heart valve disease guidelines as a priority, improved access to echocardiography (ultrasound of the heart) for GPs and equal access to treatment for patients across the UK and compared to the rest of Europe.

“It is worrying that there are such discrepancies in the treatment of heart valve disease patients across the UK. This simply isn’t good enough – where you live shouldn’t have a bearing on the type of care you receive,” said Professor Bernard Prendergast, Consultant Cardiologist, Guys and St Thomas’. “As part of our 2020 Vision, we feel that NICE should prioritise the development of guidelines on the diagnosis, management and treatment of heart valve disease, ensuring consistent standards of care for patients everywhere.”


Mr Chris Young, Consultant Cardiothoracic Surgeon, Guys and St Thomas’ and patient, Pat Khan, conducting radio interviews in the studio


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i d’Arcy JL, et al. Large-scale community echocardiographic screening reveals a major burden of undiagnosed valvular heart disease in older people: The OxVALVE Population Cohort Study. European Heart Journal; First published online: 26 June 2016
ii Opinion Matters. Aortic valve stenosis – What do people know? A Heart Valve Disease Awareness Survey of over 8,800 people aged 60 or over. Survey carried out 28/09/2015 – 12/10/2015. Data on file. Survey funded by Edwards Lifesciences.
iii Opinion Matters. Aortic valve stenosis – What do people know? A Heart Valve Disease Awareness Survey of over 8,800 people aged 60 or over. Survey carried out 28/09/2015 – 12/10/2015. Data on file. Survey funded by Edwards Lifesciences.

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