The Excellence Network held its first meeting in the South East on 27 September. Denise Wilcox summarises the event.
On 27 September, the UK Parkinson's Excellence Network held a meeting to explore how we build the Network across the South East coast and to identify strategic work themes through a series of presentations and open floor discussions.
The day was very well attended with delegates representing a wide cross section of specialties and disciplines involved in the treatment and care of people affected by Parkinson's.
Donald Grosset, Clinical Director for the Network, started proceedings with a positive - stating the inaugural meeting had the biggest turnout so far. He encouraged people to be part of the Network to enable it to extend its reach on both ends of the spectrum as a regionally, nationally and internationally recognised platform for best practise.
Clare Addison, Matron for Surgery at Surrey and Sussex Hospital, delivered our patient story - a person's perspective on life since diagnosis, coping with the condition and raising awareness. Clare touched hearts and minds with her inspiring story of the acceptance process, the knock to her self-confidence and her gradual return to, what she described, as "normal".
Whilst continuing to work as a Matron for Surgery, Clare has taken the opportunity to educate her NHS Trust. She is currently working with professionals on several initiatives, including designing a locker to enable the self-medication policy to be implemented, as well as the introduction of a flag alert system.
Clare's suggestions going forward are training all staff, including the Reception staff, and to introduce a buddy system for newly diagnosed patients. She has also taken time to develop herself again, running a mobile prosecco bar and raising £30,000 for Parkinson's UK by walking with Dave Clark and Martin Turner for 85 miles.
The PEACE plan
Nicky Hayes, Consultant Nurse for Older People at Kings College Hospital, presented the PEACE plan - an initiative which focuses on advanced care planning. Currently used across Kings, the plan addresses End of Life without barriers. It encompasses cultural and spiritual differences and encourages open discussion at any point along the Parkinson's journey. Nicky concluded with an interesting fact: Parkinson's is in the top 3 for admission to a nursing home.
The next session covered the effects of exercise in people affected by Parkinson's - a research-based project conducted by Dr Steve Meadows, Lecturer at School of Sports and Exercise Sciences and Professor Glenn Davison Immunologist, University of Kent. They delivered a fascinating presentation really demonstrating the importance of exercise and the benefits to mental and physical health.
A carer's perspective
Ann Williams and Sylvia Key talked to the group from a carer's perspective, giving a very moving account of the highs and lows of being a carer to their respective partners. A common themes were - "am I doing the right thing?", "if anything goes wrong it's my fault", social isolation and emotions ranging from boredom to high anxiety. Most touching was the "loss" of their partners even though they were still living. Praise was given to the local Parkinson's Local Adviser service, Parkinson's nurse, local group and helpline.
First steps consultant, Jason Batup, gave an insight into his own story. He was diagnosed at 41 and had no interest in life, he was depressed as his personal situation had changed beyond recognition. Jason explained the First steps programme and how it helped him break down the myths and misconceptions of Parkinson's. The programme gave him targets to achieve, including mindfulness, exercise and ways to manage his condition. It took him 4 years to find out what he found out in 1 day at First steps!
Since the meeting, a project space has been set up via Basecamp: our interactive and collaborative platform.
The Excellence Network is currently looking for a someone to take on a leadership role for the South East, acting as a voice for the regional Parkinson's clinical community. If you're interested or would like to refer someone please get in touch with the team directly at: [email protected].