Winter 2020 — patient and public involvement newsletter
In this edition, we want to highlight a couple of new tools that may help you in your volunteering. We’ve also launched a new programme to connect more researchers to people affected by Parkinson’s and share the outcomes of a workshop on bowel problems.
PPI training — refresh yourself
In the survey we carried out last year, many patient and public involvement (PPI) contributors told us that they would find it useful to revisit the ideas from our home-based PPI training. We’ve been working to develop a video that summarises the key points from the first three videos. The refresher module is now ready! You can watch the video here:
We’ve also created an activity so you can test yourself on the contents of the refresher module. If you’d like to complete the activity, or you’re interested in completing all three modules again, email us at researchinvolvement@parkinsons.org.uk
A new tool to support your volunteering
We’d like to invite you to join us on Assemble, a space designed with volunteers in mind. As a Parkinson’s UK volunteer, Assemble is your go-to place for news, resources and contacts to support your volunteering.
Parkinson’s UK volunteers have told us it’s not always easy to find the information they need. Through Assemble, you can message us, search for other volunteers, and stay in touch using the inbuilt message centre.
We’ll keep Assemble’s news feed updated with interesting articles; whether it’s research, interviews, or stories from your fellow volunteers. We’ve also been filling Assemble’s Document Hub with useful resources, such as training documents, crib sheets and more.
I know using Assemble might not be for everyone — but its resources and tools are there for you to use as much or little as supports your volunteering. Do let us know if you have any questions about Assemble or any trouble logging in!
If you haven’t already, you can log into Assemble by following these instructions.
Working together to improve bowel problems
Last year we supported Doreen McClurg, a researcher at Glasgow Caledonian University, to hold a workshop at the Parkinson’s UK head office in London. We invited people affected by Parkinson’s, health-care professionals and researchers to come together to discuss the possible therapies for bowel dysfunction in Parkinson’s.
Doreen tells us a bit more about the workshop below:
“Bowel dysfunction in people with Parkinson’s has a significant impact on quality of life but is one of the hidden symptoms. Constipation in particular is common but is often not reported, and when it is there are few clear management pathways or evidence based interventions. However, there are some new medications on the market for this problem as well as other management techniques.
We held a workshop to discuss all of the possible therapies for bowel dysfunction in Parkinson’s.
Patients felt that it was important to increase the awareness that constipation can be a big problem in Parkinson’s and that self help measures such as improving diet may help. Laxatives are often tried but are not necessarily effective in the long-term. Although some other treatments, for example abdominal massage, are often advised they do not suit everyone.
However, it was thought that a comparative research study was not really the best way to help patients. One of the problems identified by both patients and clinicians was when to refer to the more specialist services such as continence advisors and gastroenterologists. The group also discussed the variation in the availability of such services in the UK. It was felt that a self-help app, with information on symptoms and possible treatments, would be helpful but also that it should be NHS approved and linked to clinical services.
Overall we felt that the day went really well — everyone was involved in the discussions and we appreciated the candour of the people with Parkinson’s on such a sensitive topic. Moving forward we are having discussions with people with Parkinson’s, Parkinson’s UK, other funders, NHS providers and app developers — hopefully we will be able to develop a substantive piece of work to the benefit of patients and clinicians.”
Thanks to the excellent leadership of Doreen and Kirsteen everyone had the confidence to talk about this taboo subject — we were given every opportunity to contribute and debate the medical and social issues surrounding bowel dysfunction. An added bonus was the chance to speak with medical clinicians to exchange views and analyse treatment options. The elephant in the room was definitely banished!
Jayne, one of the PPI contributors who attended the workshop.
Connecting researchers and people affected by Parkinson’s
Last year, we started to pilot our new Project Engagement programme.
We want all researchers funded by Parkinson’s UK to engage with and involve people affected by Parkinson’s in their work, but we recognise that this can be a challenge for lab-based researchers. The Project Engagement programme aims to connect researchers to people affected by Parkinson’s in their local area and link researchers to the Parkinson’s community.
Volunteers meet with a research team local to them once or twice a year to discuss the project and give feedback, help connect researchers to local groups and branches where they can share their work and identify further opportunities for PPI.
One of our pilot projects is with Professor Flaviano Giorgini at the University of Leicester. John, one of the volunteers linked up with Flav, has written a blog about their first meeting. You can read the blog here:
Sharing best practice at Clinical Trials Europe 2019
In November last year, Natasha, Research Involvement Manager at Parkinson’s UK, attended the Clinical Trials Europe conference. The conference is an opportunity to share best practice in clinical trials with people from pharmaceutical companies, patient groups and academic research centres.
Natasha has written a blog outlining her key takeaways from the conference, which you can read here:
We really value your feedback on any aspect of our PPI programme, so please do get in touch anytime! Email us at researchinvolvement@parkinsons.org.uk
