Background
The term amyloidosis describes a group of disorders caused by abnormal folding, aggregation and accumulation of certain proteins in the tissues, in an abnormal form known as amyloid deposits.
Amyloidosis is classified according to the protein that forms the amyloid fibrils, and the clinical picture and symptoms can differ greatly between one amyloid type and another. There are various types of amyloidosis. Different proteins are implicated in different types of amyloids.
The National Amyloidosis Centre (NAC) is currently the only commissioned centre in England which offers a specialised centre of excellence for patients with amyloidosis and is funded via NHS Specialised Commissioning to provide diagnosis and treatment advice for these patients. The increase in activity has meant that the service has outgrown its capacity. In September 2024, NHS England, Highly Specialised Services invited suitably qualified and experienced providers to express interest in delivering services in amyloidosis. In February 2024, the Amyloidosis Networked Model of Care competitive tender outcome established that two hubs will form part of the first wave of the network expansion, thus enabling the extension of expertise across the country and improve access for patients.
Project
The Pfizer UK Medical team is proposing a collaborative effort with the National Amyloidosis Centre (NAC) to fund a post for a band 5 NAC Amyloidosis Clinical Pathway Manager. This initiative will ensure a streamlined and efficient patient journey in the NAC, allowing a patient-centred pathway based on equity, ensuring a uniform patient pathway regardless of referral origin. The goal of the collaboration is to ensure a streamlined patient pathway which centralises patient care and coordination from referral to treatment and beyond.
Whilst the network expansion will allow patients to be treated locally, there is an unmet need for patients who are being referred to the NAC virtually due to lack of proximity to a new hub. This has highlighted a need for a coordinating role to ensure clinical correspondence with referring centres, multidisciplinary team (MDT) coordination and effective alignment with pharmacy and a process audit. There is currently no capacity or funding to develop a robust patient pathway within the NAC for referred patients, to reflect the newly formed network, however this has been identified as a vital part of the network expansion by the NAC, whilst the hubs are finding their structure. The role will be based in the NAC, coordinating patients within the NAC, by ensuring synchronicity in diagnostic work up, appointments, blueteq and streamlining virtual MDTs. This will be a full-time role (37.5 hours a week) and based at the Royal Free London (NAC).
Benefits
Benefits to patients
- Improved access to specialised medicines and treatments.
- Equity of care in the NAC for patients regardless of referral centre and proximity to the NAC.
- Reduced variation in patient pathway across the country and improved equity for amyloidosis patients.
- Better outcomes for amyloid patients with specialist input from the NAC and the two hubs, with centralised MDT coordination from within the NAC.
- Patient end to end support from referral to treatment and beyond.
Benefits to the NHS
- Improved pathways that utilise the capacity and specialised clinical competencies for amyloidosis.
- Efficiency in the functioning of the amyloidosis network.
- Centralised data collection of referrals to diagnosis in the NAC.
- Clinical care aligned with standards of care developed by the NAC.
- Data collection in line with interventions of Rare Disease Framework and England Action Plan 2022.
Benefits to Pfizer
- Understanding resource utilisation for service delivery in amyloidosis.
- Understanding patient needs in amyloidosis through a feedback process.
- Establishing an understanding of the needs of amyloidosis patients post-discharge and follow up care.
- Improved understanding of the network from an MDT perspective.
- The project will result in the identification of patients who are eligible for appropriate treatment.
- Expected increase in the speed of uptake of appropriate licensed treatment for eligible patients.
Potential Outcomes
- Centralised coordination: coordination of patients referred to the NAC ensuring equity of access, patient education and expertise regardless of geographical location.
- Streamlined patient management: Uniform patients follow up within the NAC, regardless of geographical location of referral, thus ensuring equity.
- Enhanced communication: Established clinical correspondence pathways between the NAC and the referring centres and patient communication, ensuring appropriate diagnostic work-up.
- Quality assurance and continuous improvement: continuous review of patient pathways, including follow-up and changes implemented in a timely manner.
- Sufficient data captured to embed into a business case led by the service manager to demonstrate service viability and the NAC to submit a business case for NHS to continue investment post the 6-month period, if deemed successful.
Proposed term of collaborative working project
Planned start date: 1st October 2025.
Planned end date: 1st April 2026.
Resource Allocation
The Royal Free London NHS Foundation Trust and National Amyloidosis Centre will contribute:
Human resource: 243.75 hours
Pfizer UK Ltd will contribute:
Funding: £24,232
Human resource: 146.25 hours (£30,813.25)