Our Managing Director Kate Taylor and Trustee Vince Nicholas co-wrote an article along with Katharine McIntosh of Cardiomyopathy UK about the need for strengthening the networked model of amyloidosis care that was published today in the Health Service Journal.
Read the full article: Implementing the Rare Diseases Action Plan: learnings from amyloidosis care
As many of you already know, amyloidosis is a group of rare, complex conditions that can affect multiple organs and are often difficult to diagnose. Many types can lead to serious complications, including heart and nerve damage, and early access to specialist care is vital.
Historically, patients with suspected amyloidosis have been referred to the National Amyloidosis Centre at the Royal Free Hospital. While internationally recognised for its expertise, its single location can create significant travel and access challenges for patients across the UK.
To improve equity of access, the government committed to establishing a networked “hub and spoke” model, with regional centres linked to the National Amyloidosis Centre. However, progress has been slower than planned, with only one regional site currently in place.
At a recent roundtable hosted by AstraZeneca, alongside Cardiomyopathy UK, we joined clinicians and patient advocates to discuss how to accelerate the rollout of the networked model. Key recommendations included ensuring adequate resourcing, strengthening multidisciplinary care, improving education and referral pathways and enhancing coordination across services.
Networked care has the potential to transform outcomes for people living with amyloidosis and other rare diseases but sustained commitment, collaboration and investment are essential to ensure patients nationwide can access high-quality, holistic care closer to home.
Read the full article: Implementing the Rare Diseases Action Plan: learnings from amyloidosis care
NB: AstraZeneca UK sponsored this article and contracted the authors for their time spent on the article. It is intended for healthcare professionals, policymakers, and patient organisations.
