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 polices through government and the NHS.


Towards Heart Healthy Future: A Gold Standard in the Diagnosis, Treatment and Management of Heart Valve Disease in Adults.

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, in 2017 we set out to develop a ‘gold standard’ in the diagnosis, treatment and management of heart valve disease. Throughout 2017, a number of working groups were brought together to support the development of this document. These groups included 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 set out best practice for the care of heart valve disease across the patient pathway. 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.


Gold Standard Task Force

A key action within the Gold Standard was to convene an implementation group to agree upon the best ways to achieve the recommendations within the report. In 2019 this was realised in the form of the Gold Standard Taskforce, who met to agree key actions and next steps.


At the first Taskforce meeting, a number of specific actions were put forward to achieve the goals outlined within the Gold Standard. These included the implementation of best practice in cardiac image sharing, capitalising on technological advances such as digital stethoscopes, and engaging with new NHS bodies such as Primary Care Networks.


The discussion was written up in the form of an Action Plan, which will inform the Taskforce’s activity for the next few years. As an immediate action, Heart Valve Voice, on behalf of the Taskforce, will be hosting an event alongside Health Innovation Manchester. This aligns with a key pillar of the Action Plan – to highlight technology and innovation and where it can be used to improve the valve disease patient pathway. The roundtable will look at specific technologies and opportunities for implementation at a local level, with the intention that data be collected from these pilot sites to inform and support national implementation.


Taskforce members:

• Dr Chris Arden.

• Christina Bannister.

• Neil Betteridge, NHS England Patient Advisor

• Giancarlo Laura, Senior Programme Manager and Medical Directorate, NHS England and NHS Improvement

• Sally Hughes, Head of Health Services Engagement, British Heart Foundation

• Keith Pearce, President, British Society of Echocardiography

• Professor Simon Ray, Getting It Right First Time Joint Clinical Lead, Cardiology

Primary Care Guideline

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.


State of a Nation: Heart Valve Disease in Wales

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.


Unwarranted variation 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!

Patient Recovery Project

In 2021, we are aiming to start a project called Patient Recovery with our Chairman and leading professional Chris Young. We want to put wearable devices on patients to monitor their recovery times and compare the rates of Minimally Invasive Surgery (MIS) with traditional surgery. The best way for us to improve access to MIS and enhance patient outcomes is to be a part of the collection of pointed data which illustrates the merits of this treatment option. We’re dedicated to doing this and are enthusiastic about what the result of this project might show.

UK TAVI Trial

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.

Medical Technology Group

Heart Valve Voice is also a proud member of the Medical Technology Group (MTG), a coalition of patient groups, research charities and medical device manufacturers aiming to increase patient access to the best technology available. The MTG provides patient groups like ourselves with a forum to discuss the needs of patients directly with medical technology manufacturers. Through the MTG we’ve had regular engagement with clinicians, commissioners and public bodies, and we’ve worked to help them understand the patient perspective and ensure it is factored into policy decisions. We are also proud to say that our CEO Wil Woan was elected to the management committee of MTG, and has been working with the other committee members to develop the group’s strategy and plans for the future

Survey

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.

2020 Vision Report

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.

2014 White Paper

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

The more we listen, the more lives we save.