Background

Cardiac Amyloidosis (CA) is a progressive infiltrative heart muscle disease, caused by the accumulation of insoluble amyloid fibrils in the heart muscle (myocardium). The resulting cardiomyopathy eventually progresses to end-stage heart failure. Life expectancy without access to specialised treatment is poor.
 

Project

This project is aimed at supporting, via a collaborative working agreement between the University Hospitals Birmingham NHS Trust and Pfizer, the delivery of a comprehensive plan to educate, improve disease awareness, develop operational capabilities, understand and deliver patient focused services with equity, and deploy digital technologies all targeted at improving clinical pathways across the Midlands area.

The project will run over a total of 24 months: 

• Support education across the network. Roadshow, media campaign.

• Organisational readiness for regional amyloidosis hub status.

• Lead on an awareness campaign for the more difficult to reach communities, ethnic minorities, elderly and lower socioeconomic groups, where the service aims to address the inequity of patients presenting with an emphasis on the importance of early detection. The periodic collection of data to assess patient satisfaction in accessing the service.

• Collect outcome data on the service to support the Rare Disease Clinical Forum and Birmingham.

• In achieving interventions in line with the 2021 Rare Disease Framework, this would also include Steps to monitor uptake of drugs in the NHS and ensure equal access throughout the country as outlined in England Action Plan 2022.

• All data will be captured to embed into a business case led by service manager to demonstrate service viability and UHB to submit a business case for NHS to continue investment post the 2-year period.

Benefits

Benefits to Patients

• Improved access to specialised diagnostics, medicines and treatments.

• Healthcare support at a local level.

• Continuity of care from tertiary hospital to District General Hospital.

• Reduction of unnecessary hospital visits.

• Improved equity of access (e.g. lower cost barriers to access care in community settings).

• Improved adherence to medicines through new models of care.

• Supporting better outcomes for amyloid patients (e.g., improve decision making at specialist Multi-disciplinary Team (MDT), access to expert diagnostics, direct links to National Amyloidosis Centre (NAC)).

• More appropriate cases discussed, thus timely case review leading to improved patient access to MDT, specialist services and diagnostics minimising waiting times.

• Reduced variation between trusts across the region and improving equity for patients.

Benefits to the NHS

• Improved pathways that utilise the capacity and specialised clinical competencies for rare cardiomyopathy disease to support the NHS in addressing issues of rare cardiac amyloidosis.

• Efficiency in MAS working practice.

• Maintain or improve the time from referral to diagnosis.

• Clinical care aligned with standards of care developed by the NAC.

• Enabling areas to be identified for improvement to enhance best practice.

• Data collection in line with interventions of Rare Disease Framework and England Action Plan 2022.

Benefits to Pfizer

• Understanding new patient pathways for accessing hospital only medicines in the community.

• Understanding which channels to distribute our medicines through to get them to patients in a safe, robust, and convenient way.

• Increase number of patients diagnosed and treated. 

• Increase access to Pfizer medicines in appropriate patients.

• Improve the understanding of and access to challenging to reach populations.

Potential Outcomes

Improving awareness, education, equity of access and clinical pathways across the Midlands area for amyloidosis patients.

 

Proposed term of the collaborative working project

Start date: 11th November 2024
End date: 10th November 2026

 

Resource allocation

The University Hospitals of Birmingham NHS Trust will contribute:

• Diagnostic support: £127,300.00

• Human resource support: 1,344 hours

Pfizer UK Ltd will contribute:

• Clinical Fellow funding: £150,000.00

• Human resource: 192 hours