Co-designing improvements to systems of care and support to tackle inequality of access for people with Atypical Parkinsonian Syndromes: combining a system approach and realist review to inform a discrete choice experiment.

Research questions What aspects of current provision of health and social care services for people with Atypical Parkinsonian Syndromes influence inequalities of access? How and in what way does the current configuration of services impact people s ability to live as well as possible with their condition? How can service provision be improved within the constraints of current system assets? Background Around 15,000 people in the UK are affected by rare forms of neurodegeneration called Atypical Parkinsonian Syndromes (APS). People suffer from slow movements, stiffness, tremor, and poor balance. They manifest changes in cognition, communication, behaviour, and sight in adults over 60 years old and sometimes younger. With no cure available, people affected have significant care needs often unmet by the current system of care. Carers often report services can be difficult to access, due to a lack of awareness of the conditions, a late or incorrect diagnosis, or services that are not connected or unequally distributed. Methods The aim of this two years project is to investigate the complexity of current provision of health and social care services in England for people with APS. We will explore what works, for whom and why in six diverse locations in England using a combination of methods called Realist Review and System Thinking. During interviews and focus groups, we will ask people affected (at different stages of their conditions, representing different ethnic background and housing settings), their carers and health and social care professionals to share their experience of the system of care and support. Qualitative data will be used to test explanatory theories linking context, mechanism, and outcome, developed in the initial stage of evidence review. During workshops, we will invite participants to create a map of the system, used to identify transferable system assets that facilitate access to care and to generate programme theories of integrated care, and co-design a Discrete Choice Experiment questionnaire for a subsequent study. Five carers have been involved in the design of this proposal. They advised to shift the focus from exploring needs (already known) to evaluate service provision and suggested the potential locations to explore. Two public contributors from that group will continue to be involved (one as co-applicant, one as steering group member), and will help with mapping the system, co-create information for the public, facilitate people involvement during meetings, analyse data, and present results. Anticipated impact and dissemination We aim to promote efficiency of services and better use of resources to tackle inequality of access and improve the quality of life for people with APS, as well as their carers . What is currently working well will be understood and potentially replicated according to context specific needs. We will use creative methods to co-design an audio-visual representation of the elements of the system and the programme theories. Study results will be published in relevant journals and disseminated via presenting findings at relevant conferences and charity events together with public collaborators.