Inequalities across the UK is apparent and Heart Valve Voice is working with policy makers to make implementations for heart valve disease in the NHS. Read Heart Valve Voice’s policy work and reports below.

Heart Valve Voice is a patient-physician charity for people with heart valve disease. We are currently engaging with healthcare professionals across the cardiac sector in research studies, valve disease check up events and collecting blogs and stories so we can help influence cardiac strategies and policies through the government and the NHS.

Heart Valve Voice’s early policy work exposed the lack of consensus on best practice care for patients with heart valve disease in the UK. Our subsequent engagement with clinicians and patients highlighted the need for a disease specific national guideline, authored and published by NICE.

In order to make the case to NICE for the development of this guideline, we set out to develop a ‘gold standard’ in the diagnosis, treatment and management of heart valve disease. We created a number of expert working groups including senior healthcare professionals and key opinion leaders from the fields of cardiology and heart valve disease, in addition to patients.The resulting report – Towards a Heart Healthy Future: A Gold Standard in the Diagnosis, Treatment and Management of Heart Valve Disease in Adults – was published in 2018 and sets out best practice for the care of heart valve disease across the patient pathway.

Prior to NICE’s decision to develop a clinical guideline for heart valve disease there had long been a serious need for better resources to support GPs, especially in detecting and referring for heart valve disease. Our response to this need, was to create our first guidance document for primary care professionals. This practical guidance has been sent to thousands of primary care professionals who are now able to use its insights and recommendations to ensure optimal outcomes for patients and their families.

This report was made possible by authors Dr Jarir Amarin; Dr Chris Arden; Dr Matthew Fay; Dr Yassir Javaid; and Dr Denis Pellerin.

Although not mandatory, it is our hope that the NICE Clinical Guideline in development for heart valve disease will be adopted in Wales upon its publication. This will ensure that patients in Wales receive the same quality of care as their counterparts in England.

As it stands, heart valve disease does not currently receive an adequate level of prioritisation from key stakeholders in Wales. This lack of awareness and prioritisation is likely to be increasingly damaging to the NHS and patients due to Wales’ ageing population. To address this and to begin building political advocates for the condition, in 2019, Heart Valve Voice produced a State of the Nation: Heart Valve Disease in Wales report, evaluating the current provision of services and care for Welsh patients.

In 2021, we released our State of the Nation, Scotland Report. The report makes new recommendations to ramp up the detection and diagnosis of heart valve disease.

Since publication, Heart Valve Voice have been working with Scottish Government, Clinicians and Patients to implement the reccomendations of the report. Together we can build a better future for valve disease care in Scotland.

Click here to read the report

Click here to read a summary of the recommendations

Two years after our inaugural white paper report, Heart Valve Voice published its 2020 vision to bring together a range of new evidence and data on heart valve disease services in the UK. Our intention was to demonstrate the case for change against a policy backdrop in which major strides had been made in cardiovascular disease more broadly, but heart valve disease had found itself without a NICE guideline, and excluded from key NHS policies such as the Department of Health’s 2013 Cardiovascular Disease Outcomes Strategy.

The findings of this report demonstrated that, given the UK’s ageing population and the subsequent increasing burden of heart valve disease, resolving the challenges faced in the diagnosis and treatment of heart valve disease was (and remains) critical. It also made clear that not only would addressing the under-diagnosis and under-treatment improve outcomes for patients with this entirely treatable condition, but it would also save costs in the long term for a struggling NHS.

The report was launched in Parliament with over 30 politicians from across the political spectrum and both Houses attending to show their support, alongside patients, clinicians and thought leaders from the wider policy landscape.

Heart Valve Voice’s five updated recommendations, endorsed by the British Heart Valve Society, were:

  1. Awareness of the signs and symptoms of heart valve disease amongst primary care healthcare professionals and the public must be improved through effective and targeted education and awareness raising campaigns
  2. All over 65s should have their hearts routinely checked with a stethoscope by a trained primary care healthcare professional
  3. NICE should develop guidelines on the diagnosis, management and treatment of heart valve disease as a priority
  4. GPs should have improved access to echocardiography (ultrasound of the heart) for all patients with a heart murmur or suspected heart valve disease
  5. Heart valve disease patients must have access to appropriate and effective treatments;
  • a) Across the UK and;
  • b) When compared to other leading European countries.

One of the first projects launched by Heart Valve Voice after it was established in 2014 was the commissioning of a Heart Health Survey, investigating the state of heart valve disease diagnosis and treatment in the European Union.

Every year hundreds of people over the age of 60 complete these surveys, giving us invaluable insights into how heart valve disease is viewed by the people it affects and the public as a whole. We’ve been able to use the UK survey results to educate key policy makers, and strengthen our case for change in the treatment of heart valve disease.

Implementing technology to improve the patient pathway

In 2017, Heart Valve Voice (HVV) worked with a range of stakeholders to produce a report entitled Towards a Heart Healthy Future: A Gold Standard in the Diagnosis, Treatment and Management of Heart Valve Disease in Adults. This set out a series of quality statements and recommendations for the diagnosis, treatment and management of heart valve disease.

Following the publication of the report, a Gold Standard Taskforce was established to enact its findings.

The Taskforce recommended a focus on the opportunities for innovation in the pathway. Accordingly, in January 2020, Heart Valve Voice and Health Innovation Manchester hosted a roundtable policy meeting to help identify specific technologies to improve patient care for patients with heart valve disease.

The meeting brought together clinicians, pharmacists and industry personnel combine to agree a set of recommendations for implementation across Greater Manchester and beyond. The following report outlines those recommendations and discussion.

Click here to read the report.

We believe that the recommendations in the Unwarranted Variation Report: Malcolm’s Story can help by delivering optimal treatment of heart valve disease, rather than increasing the burden on the NHS, can actually help to save costs in the longer term, by keeping patients out of hospital and living independent lives. Given the burden of heart valve disease, which is only set to increase, it is critical that action is taken now to address these issues. Watch our animated video that shows Malcolms story of how his treatment could have taken a different path!

The UK Transcatheter Aortic Valve Implantation (UK TAVI) Trial is an ongoing clinical trial to assess the benefits of new valve replacement technology, in comparison to the current replacement for high-risk surgery patients. In 2017, Heart Valve Voice was selected to be part of the steering committee for the research project as an independent member, in order to provide the patient perspective on various aspects of the trial. The trial has been running since 2013, and we look forward to working as part of the steering committee until 2022, when the results of the research have been collected. Being involved in clinical research helps us shape the way new heart valve technologies are developed, ensuring they are focused on providing the greatest benefit possible to the patients we represent.

In 2014, we called on policy makers to implement six key recommendations in our inaugural white paper report. This report, led by Professor Ben Bridgewater, then Consultant Cardiac Surgeon at University Hospital of South Manchester and chairman of the Heart Valve Voice faculty, presented the facts and figures that Heart Valve Voice believed politicians, policy makers and the wider NHS need to know in order to take informed decisions about investing in services to tackle heart valve disease.

It also presented evidence of inequalities in patients’ access to treatment, from where they live, to how old they are.This was in line with the wider evidence base that demonstrates that older people attending hospital with heart disease are less likely to be fully investigated and less likely to receive treatment than younger people (Centre for Policy on Ageing 2009).

Heart Valve Voice recognises that the NHS is under financial pressure and understands that difficult choices need to be made about priorities, and which services to invest in. We therefore called on stakeholders to support six cost-effective recommendations:

  1. Heart valve disease to be included in current strategies for cardiovascular disease
  2. An awareness campaign for healthcare professionals and potential patients on the symptoms of heart valve disease and the importance of early diagnosis and treatment
  3. 15-minute GP consultations for the over-75s
  4. Appropriate referral and follow-up between primary, secondary and tertiary care with a key role played by a multidisciplinary team (MDT) to inform treatment decisions in partnership with patients
  5. The same level of surgical and transcatheter valve replacement as other leading European countries
  6. The same access to heart valve replacement treatment wherever a patient lives within the UK

With thanks to the following people who reviewed the White Paper:

Dr Jarir Amarin, GP Principal, Carlton House Surgery, Enfield and CHD Clinical Lead for Enfield, UK

Mr Malcolm Dalrymple-Hay, Consultant Cardiothoracic Surgeon, Derriford Hospital, Plymouth, UK

Mr Keith Jackson, Chairman, British Cardiac Patients Association (BCPA)

Dr Clinton Lloyd, Consultant Cardiac Surgeon, Derriford Hospital, Plymouth, UK

Professor Philip MacCarthy, Clinical Director of Cardiovascular Services, King’s College Hospital, London

Dr Bernard Prendergast, Consultant Cardiologist and Clinical Director of Cardiothoracic Services, John Radcliffe Hospital, Oxford, UK

Dr Dave Smith, Consultant Cardiologist, Morriston Hospital, Swansea, Wales

Mr Joseph Zacharias, Consultant Cardiothoracic Surgeon, Blackpool Victoria Hospital, UK

Variation in MVR treatment across England is a multifaceted issue. For example, though many heart centres perform mitral valve repair, travelling to heart centres may be more difficult for those in areas of high deprivation than for those in low deprivation. Additionally, each referral and heart centre are likely to have different patient pathways, including pathways to diagnosis, referral and treatment.

There are documented differences in diagnostic testing and treatment of MVR in women compared to men. Women are more likely to receive mitral valve replacement than surgical repair and have worse outcomes with mitral valve surgery than men. Additionally, surgical guidelines may not be sex-specific or indexed to body size.

To ensure all patients with moderate to severe MVR receive equitable access to treatment, streamlined patient pathways must be put in place across the UK. Left undetected or untreated, MVR could cause worsening heart failure and premature death. Additionally, commissioners and service designers must ensure there are no biases toward gender nor deprivation when developing care pathways.

The data presented in this report indicate the presence of barriers to treatment for patients with MVD. Increased awareness of moderate/severe MVD and better methods for pathological murmur detection in the community are needed. A greater systems-level understanding of what is required to treat the burden of moderate/severe MVR needs to be established when designing integrated systems and pathways. Additionally, sex and deprivation biases must be considered when designing pathways of care.

Read the full report here

The more we listen, the more lives we save.