Objective: Receiving a diagnosis of Parkinson’s can be challenging to one’s mental and emotional health and anxiety and low mood are common. For many people, their own or their care partner’s wellbeing is impacted. Our co-produced myParkinson’s programme consists of a nursing-led, psychology-led and Physiotherapy/Speech therapy session. Care partners and family members/friends are invited to attend. The aim is to 1) empower people to self-manage their Parkinson’s 2) signpost to relevant support services 3) provide evidence-based strategies to enhance wellbeing.
Background: New guidelines from National Institute of Health and Care Excellence (NICE) recognise the need for prioritising emotional and mental wellbeing and the importance of informing people with Parknson’s about their condition, encouraging empowerment and promoting access to support services.
Method: Our innovative Parkinson’s Wellbeing Programme has been co-produced by people with lived experience of Parkinson’s and is delivered by members of the MDT who have expertise in specialist Parkinson’s care. We administered a questionnaire measuring three constructs, understanding of the psychological impact of Parkinson’s; understanding of self-compassion and knowledge of strategies to help with anxiety/low mood. We used the Parkinson’s UK scale of Perceived Control (PUKSoPC) and Sussex-Oxford Compassion scales (SOCS). All measures were administered pre and post intervention.
Results: Data collected across three cycles of the programme showed a significant improvement in people’s understanding of the psychological impact of Parkinson’s, their understanding of self-compassion and knowledge of strategies to help with anxiety/low mood. Total scores on the PUKSoPC after the intervention showed improvement in levels of self-confidence in self-management with two main scales showing positive change, ‘get informed’ and ‘make plans’. People’s self-confidence in self-management, as measured by the PUKSoPC, also increased after the programme. Participants described the programme as “clear”, “informative”, and “well presented” and many who took part reported feeling “less alone.” Care partners valued their involvement in the programme.
Conclusion: myParkinson’s wellbeing programme has demonstrated positive change for people in their understanding and knowledge of strategies, their self-confidence in self-management and care partners also valued their involvement in the programme.
References: National Institute for Health and Clinical Excellence. (2025). NG252 Rehabilitation for chronic neurological disorders including acquired brain injury.
To cite this abstract in AMA style:
R. Lewis-Morton, B. Mohamed, J. Adenwalla, O. Batterbee, C. Bowsher-Murray, S. Mahon, T. Williams, C. Thomas, S. Page. myParkinson’s Wellbeing Programme for people newly diagnosed and their care-partners [abstract]. Mov Disord. 2026; 41 (suppl 1). https://www.mdsabstracts.org/abstract/myparkinsons-wellbeing-programme-for-people-newly-diagnosed-and-their-care-partners/. Accessed October 1, 2026.« Back to 2026 International Congress
MDS Abstracts - https://www.mdsabstracts.org/abstract/myparkinsons-wellbeing-programme-for-people-newly-diagnosed-and-their-care-partners/