Accelerating access to specialist cardiac amyloidosis care in an elderly population: an nhs–industry collaborative working model
J D Gillmore, M Fontana, C J Whelan, L Venneri, M Wood, A Smit, C Chiti, J Calinescu, L Hackman, N M Bloor, B S Phillips, L More, X Baker-WoodsAbstract
Introduction
Cardiac amyloidosis (CA) is a progressive infiltrative cardiomyopathy,1 where a delay in diagnosis can cause disease progression and an increased risk of morbidity and mortality2. Availability of approved disease modifying medicines for CA on the National Health Service (NHS), rising referral volumes, pathway variation and geographical access challenges in the UK, highlighted the need for a scalable service model to support timely patient assessment and appropriate treatment initiation. To address this care gap, a 12-month NHS-industry partnership was established, to accelerate specialist review of patients already diagnosed with CA and embed pathway improvements.
Purpose
To evaluate whether an NHS–industry collaborative model could accelerate access to specialist CA review, reduce referral to treatment timelines, and maintain operational reliability, within a high demand NHS service.
Methods
Between September 2024 and September 2025, a structured service redesign programme was implemented through an NHS-industry collaboration. The NHS Trust dedicated 5600 human resource hours (Table 1) and additional specialist diagnostics. The industry partner provided project management and funding for a clinical nurse specialist and data-capturer. Project components included, expedited clinical triage of previously diagnosed patients; expanded specialist capacity via additional clinics and remote assessments; standardised pathway controls (daily database audits, appointment reminders, same day clinical and pharmacy enquiry handling, and issue tracking); and operating procedures to support efficient review and initiation of appropriate disease modifying therapies where relevant. Real world data were collected prospectively to assess throughput, referral to treatment timelines and operational performance.
Results
Over a 12-month period, the pooling of NHS and industry resources facilitated the assessment and management of approximately 2,190 patients with CA mean age 77 years. In Phase 1, expedited clinical review was achieved within 3 months, for around 1,500 patients with CA already Trust registered. Previously, these individuals would have received annual reviews only. Phase 2 supported optimisation of the increasing influx of new referrals and further refined referral pathways. Despite increasing service demand, the median interval from referral to medication delivery was maintained at 10–12 weeks.
Conclusion
This NHS-industry collaboration delivered expedited system quality improvements, which benefitted patients, the NHS and the industry partner. This programme provides a scalable, transferable framework for CA service optimisation aligned with the NHS Long Term Plan and the UK Rare Diseases Framework priorities.3,4 Expanded specialist capacity, standardised pathway controls, and data driven oversight enabled expedited review and initiation of appropriate treatments, with sustained service resilience.Table 1ESC Abstract NAC