Parkinson's takes centre stage at London conference
Our Chair, Sally Bromley, was honoured to present a talk on Learning from Lived Experience as part of a conference on implementing the new NICE quality standard for Parkinson's. The event was promoted by Healthcare Conferences UK, and took place on Friday 16th March 2018 in London.
You can find out more about this meeting at Healthcare Conferences UK's web site.
RESOURCES ON THIS PAGE
Sally's presentation and abstract
Videos shown at the presentation
Online resources
Get It On Time (medication for inpatients)
Contact Sally and Oxford Branch
A little light relief
Presentation and abstract
Abstract
Living with a chronic degenerating condition is hard. From the moment of diagnosis to wherever the Parkinson's has taken you it is relentless and unpredictable, but Sally has found that by keeping active and by helping others she feels better herself.
The talk will share Sally's own experience of living with Parkinson's and the patient journey from pre diagnosis, and will also consider patients' varying responses to their condition and its treatment.
Based on her extensive work with fellow people with Parkinson's (PwP) Sally co-authored the First Steps course for newly diagnosed PwP. This initiative has been funded by Parkinson's UK. She will report on the impact of this course on those who have attended it and the PwP who present it.
First Steps is a good example of a successful initiative predominantly undertaken by PwP themselves, with minimal support from health care professionals. Sally will argue that this energy, enthusiasm and commitment can best be exploited in the context of creative collaboration between patients and professionals. She will provide examples of this from the work of her own Oxford Branch in the areas of research, exercise and physiotherapy, clinical practice, and other therapies and activities such as Dance for Parkinson's. It is not obvious that the NICE guidelines give sufficient importance to this kind of interaction.
This talk aims to give delegates a deeper and more personal understanding of what life with Parkinson's is like, and the positive steps that many PwPs already take to mitigate its effects. It challenges the traditional relationship between health care practitioners and PwP, and suggests that an engaged partnership can yield major benefits for all involved. Parkinson's is a complicated and multi-faceted condition and needs creative, diverse initiatives to enable patients to take control of the condition and to provide them with the best possible quality of life.
Presentation with notes
Sally's presentation, with a full transcript of her talk alongside the slides, is available at this link (8.2MB PDF document).
Resources mentioned in the presentation
NICE guidance for Parkinson's
The full guidance is available here on the NICE website.
First Steps
Find out more about the First Steps programme for newly diagnosed PwP on our website. Feedback from some of the participants can be seen in these videos. Parkinson's specialist neurologist Dr Michele Hu reviews the programme in a thoughtful and balanced article on the Parkinson's UK website.
European Parkinson Therapy Centre
This centre in northern Italy is run by Alex Reed, who has Parkinson's. You can find more on the centre's website.
Parkinson's 200 Plus conference
This conference, conceived and staged by PwP from the Oxford Branch of Parkinson's UK, took place in September 2017. The conference website still has full details including recordings of many of the presentations.
Parkinson's UK
The UK's national charity for Parkinson's has a website with extensive resources.
Oxford Parkinson's Disease Centre
The Oxford Parkinson's Disease Centre is home to the Monument Discovery Project and many exciting Parkinson's-related projects. The researchers there, at all levels, have been immensely generous with their time and enthusiasm in supporting Sally's Oxford Branch.
Oxford Brookes University
Prof.Helen Dawes of the Movement Sciences Group spoke at Parkinson's 200 Plus.
Dance for Parkinson's
This programme run by English National Ballet is currently available in London, Oxford. Ipswich, Cardiff and Liverpool (Manchester coming soon).
Video material
Participant experience
Ash and Laura describe their appreciation of the First Steps programme in this 42-second video.
Participants reflect
Pam and Sian talk about how they felt when first joining the First Steps course for newly diagnosed people with Parkinson's, and how it has changed their response to the condition, in this 40-second clip.
Making a difference for PwP
Richard Tyner, like all facilitators for First Steps, has Parkinson's himself. In this 40-second piece he tells us why he's so enthusiastic about contributing.
PwP and exercise
Parkinson's specialist physiotherapist Jo Preston shares her enthusiasm for the Big Bold and Balance exercise classes that she helped to set up and are available to people in Oxfordshire. 50-second video.
Dance for Parkinson's
Sally talks about the fun and satisfaction of participating in Dance for Parkinson's in a one-minute video created for English National Ballet's Big Give project.
Additional material
Getting medication on time for PwP in-patients
Parkinson's UK has an ongoing campaign to raise awareness of the importance to PwP of getting their medication on time, every time. They have a range of resources for professionals including posters, training material and reminder cards.
At the 16th March conference we saw a powerful 5-minute training video. It highlights the dangers of failing to meet this need, and provides recommendations for improved practice.
Light relief
You may like to watch the award-winning half-hour documentary "Parkinson's - The Funny Side" made by Paul Mayhew-Archer, a comedy scriptwriter and member of Parkinson's UK Oxford Branch.
Contact information
You can contact Sally directly by email at chair@oxfordparkinsons.org.uk