Project 4: Learning from Multiple Sclerosis – system readiness for Alzheimer’s dementia disease modifying treatments   

Background:

As disease modifying therapies for dementia emerge, services will need to be redesigned to ensure that people who are eligible to receive these treatments can access them. However, it is likely that less than a quarter of people seen in memory clinics will not be eligible for these drugs. Lessons from how services for people with multiple sclerosis (MS) were changed when similar drugs became available for that condition show there can be unintended consequences of centralising services around specialist centres, such as disadvantaging people who cannot travel to them. This project aims to prevent similar challenges in dementia services by learning from the experiences of MS services and developing sustainable care pathways. 

Aims and objectives:

We want to understand how services have developed to meet the needs of people with MS who are not eligible for new drug treatments and learn from what has worked well and less well. We are interested in how to plan services for new treatments that do not compromise care quality for people who are not eligible for them. 

Methods:

We will carry out a survey of Integrated Care Systems (ICS) in diverse areas of England, with services that are set up in a range of different ways. We will co-design this survey with people with lived and professional experience. The questions will explore access to, and challenges within, services. Qualitative interviews with stakeholders, including patients, clinicians, and charitable organisations, will provide deeper insights. We will compare findings between MS and dementia services.  

Policy relevance and dissemination:

The project aligns with existing work led by NHS England and aims to inform service commissioners, local service leads, community care services and commissioners. As well as publishing papers in academic journals, we will develop toolkits and practical examples that can be used by a wider audience. We will link with ongoing work by UCLPartners and Integrated Care Board commissioners to look at how new disease modifying drugs for dementia might affect how services are delivered, and the best ways to adapt services.