The joint Peninsula and South West regional Excellence Network meeting was held on 27 November 2018 in Taunton. Jane Rideout, lead for the Peninsula regional Network chaired the day. The South West Network is recruiting for a lead (see details at end of page).
Jane, who has Parkinson's, is a member of the Parkinson's UK Cornwall, Devon and Somerset Local Development Team, a volunteer with the Self-Management and First Steps programmes and an active promoter of the benefits and availability of exercise for people with Parkinson's.
The packed agenda covered topics from pain management to patient centred service design, engaging the 45 attendees from across the South West and Peninsular Networks.
Shining a Light on the Hidden Face of Parkinson’s – Pain and Pain Management
Dr Daniel van Wamelen, Consultant Neurologist and Clinical Research Fellow, King's College Hospital London discussed the nature and incidence of pain in Parkinson's. Daniel outlined the current thinking on the possible sub-types of the condition and the differential pain symptoms involved, and the options for treatment.
Developing a Parkinson's Research Interest Group: The South West Experience
John and Sue Whipps, members of the Mid-Cornwall Branch of Parkinson's UK, shared their experience of setting up a local network of people interested in Parkinson's research and the part such a Group can play in the sharing of information and the promotion of participation in research.
Parkinson's Power: A National Behavioural Change Project
Tim Morton, Project Manager at Parkinson's UK, outlined how the Parkinson's Power Project is promoting increased physical activity within the less active Parkinson's community. The project is currently based within the North East of England and a bid has just been submitted to Sport England for further funding – Tim is optimistic!
Non-Contact Boxing: The Bristol Experience
Nic Mortensen and Dawn May, Bristol Branch of Parkinson's UK and Dennis Stinchcombe, Bristol Boxing Coach, shared the background to the establishment of a Parkinson's group held in a Bristol boxing gym, the benefits to participants and then gave a very lively demonstration of what's involved! Dennis is now using his position as Chair of the South West ABA Boxing Coaches to promote similar across the region.
Patient Centred Service Design: The Plymouth Experience
Camille Carroll, Associate Professor and Honorary Consultant Neurologist, Derriford Hospital, Plymouth talked through the process that had been adopted in Plymouth to bring people with Parkinson’s, carers and organisational stakeholders together to develop a more integrated pathway.
The clinical team wanted to ensure the pathway was truly built around patient and carer need. External facilitators were commissioned as creative "honest brokers" and a number of workshops were held, utilising the magic of Lego and other items. The team are currently translating outcomes the outcomes of this process into Plymouth-specific practical delivery.
Jason Batup, First Steps Consultant at Parkinson's UK, who is a younger person with Parkinson's, has been involved in the development and initial roll out of the 2-day First Steps programme. This programme aims to support and empower recently diagnosed people in "taking control" of their response to the condition. Programmes have been held in collaboration with regional Excellence Network leads in various Network locations, including in the Peninsula Network with Jane Rideout.
Network Update and Basecamp
Geoff King, Service Improvement Adviser (West England) , Parkinson's UK gave a swift update on Excellence Network activities, the benefits of signing up to our online collaboration space (Basecamp), the 2019 UK Parkinson's Audit, which registration open for on 18 February and forthcoming activity for the Get It On Time campaign.
Awareness Training for Exercise Providers: the Gloucestershire Experience
Jane Rideout and Neil Smart, Area Development Manager, Parkinson's UK, talked through the development of a training package for physical activity and exercise providers, locally delivered in conjunction with Sport England County level networks, which aims to equip non-specialists with the knowledge and skills to engage people with Parkinson's in mainstream activities. The latest training had happened in Gloucestershire and was extremely positively received. Discussions are underway on rolling out the training in other areas.
For access to the presentations mentioned, via our online collaboration space, Basecamp, please email [email protected].
The Excellence Network is looking for a regional lead for our South West Network. If you are interested in bringing health and social care professionals together to share best practice and better support people with Parkinson's in the region please contact [email protected] for more information.