The series comprises educational and discursive webinars held on a variety of related topics, with the additional aims to share best practice examples and inspire open dialogue between multidisciplinary team members and their patients.
Here you will find discussion summaries and expert speaker podcasts from the series, as well as a special film developed in collaboration with PHA Europe on the value of peer-to-peer mentoring.
We encourage the resources to be shared with healthcare professionals and patient group representatives that may benefit from learning more about these topics.
Patient groups are only set up to support the over 30s
Danijela Pešić, founder and president of PHA Serbia, discusses how patient groups can unlock the ‘fighting’ spirit of and engage young people living with PH in their activities
Mental health in PH: not our responsibility?
David Gilbert presents his personal experiences of living with mental health issues, as well as his professional reflections on managing mental health within a clinical setting
Peer-to-peer mentoring is equally valuable as physician advice
Gerry Fischer, Hans-Dieter Kulla and Hall Skåra from PHA Europe discuss the importance of peer-to-peer mentoring and how patient groups can take an active role in organising and facilitating mentoring for members
Intimacy and PH
Nurse practitioner Wendy Hill discusses the critical issues of intimacy, pregnancy and contraception in relation to pulmonary arterial hypertension (PH) patients
Danijela was diagnosed with pulmonary hypertension as an infant over 39 years ago. She is the founder and CEO of PH Serbia and is dedicated to raising PH awareness across Serbia and Europe, on behalf of people living with the disease. With Danijela’s inspirational leadership, PH Serbia has reached tens of thousands of people through its engaging social media and local celebrity-endorsed campaigns.
David is a former mental health service user and has 25 years’ of experience working with and for patients. He currently works as Patient Director for The Sussex Musculoskeletal (MSK) Partnership – the first role of its kind in the NHS. He has worked with over a hundred organizations to help develop effective ways that patients can be true partners in health and healthcare. David set up the consultancy InHealth Associates seven years ago, to provide strategic advice and support for health and social care organisations.
Wendy Hill is a PH nurse specialist at Cedar-Sinai Medical Group in California, US, who has been working in the field of PH for 20 years. She has managed and coordinated over 35 PH research studies, recently focusing on the study ‘Intimacy, Contraception, and Pregnancy Prevention in Patients with Pulmonary Arterial Hypertension: Are We Counseling Our Patients?’. The study delves into the risks of pregnancy in PH patients, methods of contraception, issues of intimacy, and what level of counselling is appropriate from healthcare teams. To read the full paper please visit http://journals.sagepub.com/doi/pdf/10.1177/2045894018785259