Promoting service efficiency and better use of resources to tackle inequalities in access and improve the quality of life for people with rare neurodegenerative conditions, as well as their carers.
Why the research is needed?
People living with Atypical Parkinsonian Syndromes often face unequal access to appropriate care and support, due to complex needs, diagnostic challenges, and variation in service provision. Around 15,000 people in the UK have these rare diseases that cause rigidity, poor balance, and changes in mood, thinking, vision, ability to eat and communicate. Often, family members need to provide and organise care for these people because what the current health and care service is providing is not made for their needs or available to them.
Improving systems requires understanding real‑world barriers, the experiences of those affected, and the structural factors shaping access. This study aims to address these inequalities by directly involving stakeholders and drawing on system‑wide evidence.
What are we doing?
We will explore the diversity of experiences that people with Atypical Parkinsonian Syndromes (APS) and their carers have with access and use of health and care services, understanding the context and complexity of provision in specific locations in England.
We will conduct a realist review to understand what works, for whom, and in what contexts. Through focus groups with patients, carers and professionals, we will gather information to support us inform a systems approach to map current pathways, challenges, and opportunities for change. In addition, we will use our findings to inform a discrete choice experiment, helping identify which service features matter most to patients and families.
How are we working with communities, services and organisations?
Our project is built on a co‑design approach, working in genuine partnership with the people and organisations who understand Atypical Parkinsonian Syndromes (APS) best. This includes people living with APS and their carers, whose lived experience shapes every stage of the work; health and social care professionals involved in assessment, diagnosis, and ongoing support; and organisations across local care systems responsible for designing and delivering services. We will collaborate closely with charities providing specialist support, including the PSP Association and the MSA Trust. Five people with lived experience form our PPI group, ensuring that system‑improvement recommendations are grounded in real needs, preferences, and existing assets. Together, this collaborative model aims to reduce disparities, strengthen coordination, and improve the responsiveness of health and social care for people affected by APS.
What will the impact and benefits of this research be?
The impact of this research is expected to include more equitable care pathways for people with APS, helping to reduce gaps in access and address inconsistencies in service provision. It will generate evidence‑based recommendations that support services to prioritise what matters most to patients and carers, strengthen coordination across health and social care systems, and enhance the involvement of people with lived experience in shaping future service design.
What do we have planned for knowledge mobilisation and implementation?
Our knowledge mobilisation and implementation work will focus on applying realist review findings to co‑produce practical recommendations for service redesign, using the discrete choice experiment to give commissioners clear evidence on preferred and equitable service configurations, and working with the ARC East of England's partner organisations to support implementation.
We will also establish a Community of Practice and co‑create dissemination materials with public contributors to ensure results are shared effectively.
Related papers, outputs and resources
- Outputs of phase 1: Evidence-based programme theories of delivering care and support in different contexts to people with APS, including the different actors (stakeholders) and their needs, and a set of causal mechanisms operating within the APS care and support setting.
- Outputs of phase 2: Network map, list of transferable assets that facilitate quality improvement of the system of care and support for people with APS.
- Output of phase 3: Realist logic model, DCE questionnaire.
For more information, visit the NIHR's Funding Awards website page
Who is involved?
- Chief Investigator: Dr Annalisa Casarin, University of Hertfordshire
- Joint Lead Applicant: Dr Boyd Ghosh, University Hospital Southampton NHS Foundation Trust
- Dr Melanie Handley, University of Hertfordshire
- Dr Gulshan Tajuria, Midlands Partnership NHS Foundation Trust
- Dr Michela Tinelli, London School of Economics
- Dr Tom Bashford, University of Cambridge
- Miss Janet Messer, University of Hertfordshire
- Honey-Anne Greco, Senior Research Assistant, University of Hertfordshire
Get in contact
Email the project team at improveAPS@herts.ac.uk.
