Welcome to our second update of the year, with important developments across our key campaigns including a 20th anniversary report, our submission to the NICE consultation, and the findings of our research into NT-proBNP access in Community Diagnostic Centres.

Launch of Community Diagnostic Centre research

At the start of June the Alliance launched its research into NT-proBNP access in England’s Community Diagnostic Centres (CDCs). NHS England guidance states that both phlebotomy and point of care for NT-proBNP should be provided as a minimum core test. However, our research found that the majority of trusts and ICBs reported limited access to both of these tests, with large amounts of the data also not recorded.

The Alliance’s research was covered in the Health Services Journal and the Clinical Services Journal. We are currently following up with a number of key stakeholders including Getting it Right First Time (GIRFT) and NHS England. We are also engaging with parliamentarians to highlight limited access to these tests, and explore ways they can be better integrated as part of a proactive strategy to support the diagnosis of the estimated 385,000 people living with undetected heart failure.

In response to the research, the Royal College of Pathologists, the British Society for Echocardiography, and Pumping Marvellous stated they would like to see greater access to these tests in CDCs as a means to to effectively triage patients in order to reduce referrals to specialist care and echocardiography.

Call To Action report on heart failure in primary care

To mark the 10th anniversary of the formation of the Alliance for Heart Failure, we are developing a Call To Action report based on our work over the last five years in improving time to diagnosis and management of heart failure in primary care.

Using clinical insights from our recent primary care webinar, as well as other initiatives being supported by our members, we will highlight the urgent need for a better-resourced strategy in primary care to relieve the growing burden of heart failure.

We are focusing on a number of areas including workforce education, better access and use of diagnostics, improved integration of secondary care specialism with primary care, and the optimisation of treatment in the community outside the multidisciplinary team. We have so far spoken to patients and the Alliance’s clinical contacts. If you would like to find out more about the paper, or contribute please email ahf@3nine.co.uk.

Submission to NICE consultation on the diagnosis and management of chronic heart failure in adults

The Alliance has submitted to the latest NICE consultation. Here are some of the key recommendations we have highlighted on behalf of our members:

  • Access to Cardiac Rehabilitation: Members welcome the removal of wording that could restrict cardiac rehab for “unstable” patients but highlight persistent access issues, especially for people with cardiomyopathy. Survey data from Cardiomyopathy UK reveals unmet needs in physical, emotional, and educational support. The Alliance supports an assessment-based approach to improve equitable access.

  • Inclusion of STRONG-HF evidence and support for implementation: The Alliance has highlighted member concerns around the exclusion of the STRONG-HF economic evaluation due to its U.S. origin. The study demonstrated that rapid up-titration of GDMT reduces mortality and hospital readmissions, and is highly cost-effective, with ICERs well below accepted thresholds. We have also reiterated member suggestions that resourcing concerns over its implementation can be overcome, pointing to the success of the model at St Barts in London.

  • Incorporation of Diagnostic Guidance DG61: Members highlighted the omission of NICE DG61 on algorithm-based remote monitoring for patients with cardiac devices. They urge its integration into the guideline to align with best practices and promote technology adoption.

  • Guidance on Hyperkalaemia Management: The Alliance is concerned that referring clinicians to “local guidelines” for managing hyperkalaemia in heart failure is inadequate, as many areas lack such guidance. This could lead to inconsistent care and reduced use of recommended therapies. We are urging NICE to include national guidance and incorporate approved potassium binders (TA599 and TA623) to support safe and effective treatment.

A tribute to Richard Corder

It is with great sadness that we report that Richard Corder from Cardiovascular Care Partnership, who served twice as Co-chair of the Alliance, passed away earlier this year. Richard was a hardworking and valuable patient advocate for heart failure. Despite his ill health, he used his experience to campaign tirelessly and passionately to improve outcomes for people living with the condition.

We greatly valued his support and friendship. He will be fondly remembered by all our members.

Welcome to our new Co-chair, Katharine McIntosh

Following Richard’s passing, Katharine McIntosh, Head of Research and Policy at Cardiomyopathy UK, has been nominated to the role of interim Co-chair of the Alliance. Katharine has vast experience with health and patient charities in policy and external affairs roles.

Katharine has worked closely with NHS England, serving on a Clinical Reference Group as a patient and public voice member, and currently sits on the Heart Failure Expert Advisory Group. She has also been involved as a lay expert on a NICE quality standard committee.

Katharine brings an excellent set of skills that will help us build on the achievements of the Alliance to date and further its goals.