Advertise on podcast: Haemcast

Haemcast’s special series in collaboration with Local families with bleeding disorders continues with a reflection on what makes the parents of children with haemophilia feel supported.  Mums Melissa and Alex both acknowledge the importance of the ongoing support they have from their sons’ haemophilia care teams. However, they also describe times when they’ve felt unsupported by medical staff due to not being listened to and feeling unheard, and the resulting stress and anxiety.  Both mums suggest potential solutions to the issues they’ve experienced with their sons’ haemophilia care. They also speak about the role that non-medical support from members of the Local families group has played – and continues to play – in their haemophilia journeys. For more information on Local families with bleeding disorders, visit www.bleeding-disorders.co.uk   CREDITS Participants: Melissa Lloyd, Alex Akrimini Interviewer: Kathryn Jenner   Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠⁠⁠bensound.com⁠

In this episode of Haemcast’s special series in collaboration with Local families with bleeding disorders, we look at some of the challenges that can arise when treating a child with haemophilia. Getting used to administering treatment can be challenging, particularly in the early days. Until recently, most haemophilia treatments have been given intravenously, which is a challenge in itself, but other issues can arise too.  In ‘Ports, pressure and panic’, we speak with three parents of children with haemophilia about treatment-related challenges they’ve experienced. They discuss how they’ve managed and overcome these challenges, and the impact on them as parents. If you would like to find out more about Local families with bleeding disorders, visit www.bleeding-disorders.co.uk   CREDITS Participants: Sam Keeley, Nicola East, Andrew East Interviewer: Kathryn Jenner Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠⁠⁠bensound.com⁠

The next in our special collaboration between Haemcast and Local families with bleeding disorders focuses on the partners of people who live with haemophilia and von Willebrand disease.   Anya, Emma and Tom agree that while bleeding disorders are significant in their lives, they don’t define their partners’ identities or their relationships.    They talk about teamwork and living in the moment, and they share a pride in their partners’ resilience and advocacy. But they also note a lack of support and awareness for partners themselves, particularly when it comes to medical issues.   For more information about Local families with bleeding disorders, visit www.bleeding-disorders.co.uk.   CREDITS Participants: Anya Gorman, Emma Drake, Tom Charles Interviewer: Kathryn Jenner   Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠⁠⁠bensound.com⁠

When making choices about treatment for a bleeding disorder, for a child or for yourself, what matters most?  In this episode of Haemcast’s special series in collaboration with Local families with bleeding disorders, we speak with parents about the considerations that come into play when making decisions about haemophilia treatments. They share their treatment stories, expectations and anxieties around treatment changes, and how easy it is to access new or different treatments. For more information about Local families with bleeding disorders, visit www.bleeding-disorders.co.uk   CREDITS Participants: Gemma Gardner, Nicola Green, Bonnie Charles Interviewer: Kathryn Jenner   Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠⁠⁠bensound.com⁠

When it comes to managing family life with a child who has a bleeding disorder, parents aren’t just caregivers – they’re organisers, advocates and educators. Alongside managing their child’s condition, they have to help them understand it too. In this episode of Haemcast’s special series in collaboration with Local families with bleeding disorders, parents discuss how they go about talking to their child about their bleeding disorder – helping them understand where it comes from, what it means for their day-to-day lives, and why their treatment is important. For more information about Local families with bleeding disorders, visit ⁠www.bleeding-disorders.co.uk   CREDITS Participants: Hannah Brunning, Mark Salmen, Jackie Perkins Interviewer: Kathryn Jenner Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠⁠⁠bensound.com⁠

The first in a special Haemcast series in collaboration with Local families with bleeding disorders, exploring aspects of family life. In this episode, members of Local families with bleeding disorders discuss the online workshops that helped them explore their experiences and express their hopes, expectations and worries about the bleeding disorders that impact their families. They are joined by community advocate Rich Gorman, and poet and arts practitioner Dawn Gorman (no relation). The poetry collection resulting from the workshops, Bleeding and Belonging, is available online as an eBook. For more information about Local families with bleeding disorders, visit www.bleeding-disorders.co.uk CREDITS: Participants: Dr Rich Gorman, Dawn Gorman, Lisa Steadman, Hannah Brunning, Marie Dolton, Alex Akrimi, Claire Brown Interviewers: Kathryn Jenner, Dr Kate Khair Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠⁠bensound.com⁠

Morris Okello lives in Northern Uganda. In this episode of Haemcast, he tells Dr Kate about the childhood experiences that eventually led to him being diagnosed with haemophilia B. As well as describing his own journey towards becoming an advocate for people with haemophilia in Uganda, Morris highlights the work of the Ugandan Haemophilia Society in raising awareness, improving rates of diagnosis, and providing access to treatment and care. CREDITS: Speaker: Morris Okello Griffin Interviewer: Dr Kate Khair Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠⁠bensound.com⁠

Dance teacher and Haemophilia Society trustee Helen Tate talks with Haemnet's Dr Kate Khair about living with Factor V deficiency, a rare bleeding disorder that affects around one in a million people. Helen leads an active life despite her condition and is a passionate advocate for the rare bleeding disorders community. She discusses diagnosis, coping with bleeds when treatment options are limited, and what she thinks needs to change to improve life for everyone who lives with a rare bleeding disorder. CREDITS: Speaker: Helen Tate Interviewer: Dr Kate Khair Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠⁠bensound.com⁠

Following our six-part mini-series 'Reflections on a life with severe haemophilia', with Terence O'Rourke, Haemnet's Dr Kate Khair considers some of the things that have changed in haemophilia care during Terence's lifetime – and some of the  things that perhaps haven't. Kate discusses the importance of remembering times when haemophilia treatment wasn't so readily available, getting a diagnosis, treatment decisions, feeling isolated, and the importance of support and understanding. CREDITS: Speaker: Dr Kate Khair Interviewer: Kathryn Jenner Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠⁠bensound.com⁠

The final part of our mini-series featuring Terence O'Rourke, in which he reflects on living with severe haemophilia A. In this episode, Terence discusses his approach to making decisions about treatment, and the importance of teamwork in both his working life and in relation to his haemophilia care. CREDITS: Speaker: Terence O’Rourke Interviewer: Dr Meila Roy Producer: Chris Caton Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠bensound.com⁠

In part 5 of Terence O'Rourke's story, he again reflects on his working life and how this was impacted by both his haemophilia and its treatment. He discusses his approach to and choices about treatment and managing his haemophilia, and about eventually overcoming hepatitis C. Terence continues to be driven by determination and confidence in his own problem-solving ability throughout. CREDITS: Speaker: Terence O’Rourke Interviewer: Dr Meila Roy Producer: Chris Caton Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠⁠bensound.com⁠

In part 4 of our mini-series in conversation with Terence O'Rourke, he reflects on changes in treatment for haemophilia and the arrival of Factor VIII.   Terence describes some of the prejudice he experienced as a person with haemophilia, and the faith his wife had in him. He also discusses the progression of his career, and how it shifted and changed around his haemophilia.   CREDITS: Speaker: Terence O’Rourke Interviewer: Dr Meila Roy Producer: Chris Caton Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠⁠bensound.com⁠

In the third part of our conversation, Terence O’Rourke looks back on his young adulthood in the late 1950s and early 1960s, starting work in an architect’s office and becoming a student.    This was an important time for Terence. He was studying with his peers for the first time and embarking on the early stages of what would become a very successful career.   Terence also reflects on how his haemophilia was treated during this time – and how he questioned the accepted methods of treating bleeds at a time when most people accepted that doctors knew best.   CREDITS: Speaker: Terence O’Rourke Interviewer: Dr Meila Roy Producer: Chris Caton Music: Once Again Royalty Free Music by Benjamin Tissot via ⁠bensound.com⁠

We rejoin Terence O'Rourke to as he reflects on growing up with haemophilia, not being able to go to school, his education, and the impact of this on his life. Now in his 80s, Terence also looks back on his career aspirations and goals. What comes through is his determination to pursue these despite the obstacles he faced as a young person with haemophilia and limited access to treatment. Credits: Speaker: Terence O'Rourke Interviewer: Dr Meila Roy Producer: Chris Caton Music: Once Again Royalty Free Music by Benjamin Tissot via bensound.com

In the first part of a six-part mini-series, Terence O’Rourke looks back on his childhood memories of living with severe haemophilia, including his education and experience of treatment. Terence, who is now in his 80s, has an exceptional mind and has enjoyed a successful career. Over the course of this series he reflects on how his relationship with haemophilia has both impacted and shaped his approach to life, from childhood through adulthood. Credits: Speaker: Terence O’Rourke Interviewer: Dr Meila Roy Producer: Chris Caton Music: Once Again Royalty Free Music by Benjamin Tissot via bensound.com