Objective: To collate the wishes and ambitions of the Parkinson’s community in Europe and create a guide for those working in health care, research and policy of the priorities for people living with Parkinson’s.

Background: Parkinson’s Europe (PE) works and campaigns with people affected by Parkinson’s to ensure their voices are heard.  A key strategic goal is to facilitate better understanding of Parkinson’s among healthcare professionals (HCPs) and to highlight gaps that exist in treatment and care. A Parkinson’s Manifesto for Europe was launched in 2022 to reflect the hopes and ambitions of the European Parkinson’s community.

Method: In 2022, we collected data from a variety of sources including desktop research, surveys, social media, e-shots and workshops. People with Parkinson’s, family members, caregivers and HCPs were invited to fill in an online survey with their wishes for the future. The survey comprised of 5 open text and ranking questions and translated into 9 languages. Results of the survey framed 4 workshops held in May and July 2022 and attended by people with Parkinson’s, caregivers, family members and HCPs.

Results: 913 people from 39 countries responded to the survey. 58% were people with Parkinson’s, 35% were caregivers, partners and supporters and 7% were HCPs.  The collated data was refined into 8 broad themes for the workshops which in turn identified 5 priority areas [figure1] The second key priority was to educate and train all HCPs about Parkinson’s including the need to:

Ensure that all HCPs have a better understanding and knowledge of Parkinson’s 

Enable HCPs who are experts in the Parkinson’s field to easily share best practice and help connect the Parkinson’s community with research opportunities

Encourage HCPs to provide a diagnosis in a sensitive, supportive and timely way

Ensure that HCPs better understand the needs of the individual 

Equip HCPs with appropriate resources and tools

Conclusion: Our results suggest that a key priority identified by the Parkinson’s community is improving the education of HCPs. These findings provide supporting data and a rationale for why more education should be available to HCPs.  It should also act as a guide to HCPs and educational providers to ensure their work is aligned to the needs and wishes of the Parkinson’s community.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/a-parkinsons-manifesto-for-europe/