Patient-Clinician Partnered Activities of the Vulval Pain Society: A Template for Better Education & Care

Tuesday, 2nd November 2021
1:00pm2:00pm EDT

Local Time: to

About the Session

“Partnerships, connections, being seen, being heard are all vital for us as human beings.
For the person living with pain these basic, essential needs, a collaborative relationship with a health professional is not only validating but can set them on a path toward better care. To access appropriate care, at the earliest opportunity isn’t that what the person living with pain deserves..?

The Vulval Pain Society combines the experience of PWLE past and present, with multidisciplinary healthcare professionals, and a researcher [see anything else section]. As well as providing online resources and practical advice we bring patients, clinicians, and researchers together via online and offline events.
Listening, learning, sharing – collaboration, partnerships are how we make changes that can benefit PWLE.
And we have learned a lot over the past 25 years.
In this presentation, you’ll hear from 6 members of the VPS team who will share patient stories, introduce patient and clinician resources which can be transferred or adapted for a wider reach. Although vulval pain is more common than you might realise…

VULVAL PAIN
Vulval pain affects at least 1 in 7 womxn in their lifetime. You’ll likely know someone who lives with vulval pain, but you may not realise that they do.
Why? Because it tends to be seen as taboo and misunderstood.
Also underdiagnosed in primary care, it can take months or years to access appropriate treatment, by which time the pain has become persistent.
From sisters and mothers, to wives, friends, colleagues, the womxn in our lives deserve to be treated better.

FIRSTLY – PWLE
Kay Thomas (PWLE) and Sheren Gaulbert (former PWLE) open up about their personal journeys and give voice to the experiences of several people from a vulval pain support group. They’ll consider what has changed and what needs to change. Self-management strategies will also be discussed.

PATIENT RESOURCE
Dr Winston de Mello will introduce a checklist for patients to prepare for a medical consultation so that their voices may be better heard and concerns fully addressed.
Link to the full checklist will be shared for patients, and clinicians to direct patients toward.

HEALTH PROFESSIONAL/CLINICIAN RESOURCE
Dr Karen Gibbon will play a clip of a patient describing their symptoms and highlight how the words people use can help indicate a particular treatment route. She will introduce an algorithm that can help determine a suitable care pathway.
Link to the algorithm will be shared.

IMPROVING CURRICULUMS & THE FUTURE
Dr David Nunns will describe the role of multidisciplinary care teams and what they might look like. He will also discuss how the Royal College of Obstetricians & Gynaecologists’ core curriculum has changed for the better since he first trained!

RESEARCH & THE FUTURE
Claudia Chisari (former PWLE) will talk about common psychological approaches, and what research shows about where it has or does not have a place. She will also discuss directions for future research.

SUMMARY
Sheren Gaulbert will highlight main points and key thoughts from chatbox interactions; then point to resources.”

The presentation covers education, advocacy, research, and self-management aspects.

VULVAL PAIN SOCIETY (VPS)
1996: The Vulval Pain Society (VPS) founded by consultant gynaecologist and nurse practitioner with initial aim of supporting and advising people living with vulval pain.

The VPS quickly realised that involving people with a lived experience, to be better informed by hearing their stories, to form part of the core team was an integral part of facilitating change.
Today, the VPS provides resources, practical advice, and information for people living with vulval pain, families, and healthcare providers, as well as the wider public.

 

Polls will be run, reaction emojis and chatbox interactions will be encouraged throughout. At reflection points at the end of certain sections, audience members can share their thoughts on what actions they might take, such as utilising strategies or making changes.

We are a team that is continuously learning and have links to patient support groups as well as a number of medical associations.

2010: We had already been running workshops for patients across the UK for several years and one of our team, who lives with vulval pain, had the idea of bringing patients and healthcare professionals together at a national conference (UK). The event was such a success we have been running it bi-annually ever since. A day of short lectures and Q&A sessions with different experts and a space for everyone to meet – for patients to talk to multidisciplinary health professionals, and have their voices heard, and for clinicians to learn from patients.

2020-2021: We have been running regular webinars and Livestreams with guest expert clinicians, researchers, and expert patients. We’ve covered key areas and subspecialties, as well as self-management, gut microbiome research, and practical sessions such as yoga and meditation. In 2021 we have been running 2 Livestreams (simulcast to Facebook and YouTube) a month with viewing figures usually between 1000-2000 (live plus recording replay figures).

We highlight and promote the work of researchers.

We are currently working on a few projects with the help again of people living with pain, drawing up best practice models for better care in specific areas of vulval pain.

Categories

Presented By

Winston de Mello

Trustee
Vulval Pain Society (UK)

Claudia Chisari

Kings College London

Kay Thomas

Operations Director
Vulval Pain Society (UK)

David Nunns

Trustee
Vulval Pain Society (UK)

Sheren Gaulbert

Trustee
Vulval Pain Society (UK)