Welcome to the Haemcast, where we talk about all things haemophilia and bleeding disorders. Join us as we speak with leading experts in the field to tackle and address the latest news, hot topics and research.
WHD African Update: Dr Kate Khair speaks to Agnes Kisakye of the Haemophilia Foundation of Uganda
As we celebrate World Hemophilia Day, Dr Kate Khair and guest Agnes Kisakye talk about the Haemophilia Foundation of Uganda and its mission of ensuring access to all
April 17, 2022
Using Storytelling to Educate and Empower the Hemophilia & Bleeding Disorders Community ft. Patrick James Lynch, Founder & CEO, Believe Ltd
In this episode, Luke Pembroke, Creative Director, Haemnet, speaks with Patrick James Lynch, haemophilia community advocate and Founder of Believe Ltd; a production company based in LA creating entertainment to affect change in the bleeding disorders and rare disease community. Patrick shares the story and inspiration behind founding Believe and shares his insights about the potential of storytelling to educate those living with rare conditions about care, treatment and advocacy, as well as using storytelling to raise awareness amongst the general population. Be sure to follow Patrick on Twitter @pjlynch and check out Believe Ltd's work - https://www.believeltd.com/ You can watch the latest (and previous) series of Stop The Bleeding by going to www.stbhemo.com or on YouTube.
March 21, 2022
The 1 in a Million Bleeding Disorder: Glanzmann's Thrombasthenia w/ Dr Catherine Rea
We hear a lot about hemophilia within the bleeding disorders community but of course it isn't the only bleeding disorder. In this special Rare Disease Day 2022 episode of Haemcast, Kate Khair speaks with Dr Catherine Rea about Glanzmann's Thrombasthenia, an extremely rare bleeding disorder. We tackle the basics behind how Glanzmann's affects blood clotting and explore the challenges those with the condition face. Dr Rea is a senior haematologist within the NHS and part of the development team at Hemab Therapeutics. Moving forwards, Haemnet and Hemab will be collaborating on a natural history study to better understand the impact of Glanzmann's on people living with the condition and their families face. To find out more and get involved email Kate (email@example.com). Follow us on Twitter! @haemnet
February 28, 2022
What is the Exigency Study? feat. Lead Investigator & Research Nurse Simon Fletcher, Oxford University Hospitals NHS Trust
You might have seen Haemnet posting about and recruiting for the Exigency Study last year. We found ourselves getting a lot of questions and comments about the study from "what does exigency mean?" to "what is the study about?"... So we invited Lead Investigator, PhD candidate and haemophilia research nurse, Simon Fletcher to give us the low down on the Exigency Study. So listen in to find out more about the experiences of people with haemophilia and gene therapy, qualitative research methods and more. Drop us a Tweet or email if you have any other questions about the study. Twitter: @haemnet Email: firstname.lastname@example.org Resources: An exploration of why men with severe haemophilia might not want gene therapy: The exigency study Parental perspectives on gene therapy for children with haemophilia: The Exigency study Seeing the bigger picture: Qualitative research in the Zoom® age
January 28, 2022
Risk-benefit assessment for Gene Therapy in Haemophilia ft. Declan Noone, EHC President
Declan Noone, President of the European Haemophilia Consortium (EHC) joins Haemcast hosts, Dr Kate Khair and Luke Pembroke to discuss the complexities surrounding risk-benefit assessment when making a decision around gene therapy. From considering the patients' and healthcare professional perspectives to the regulators and payers, thorough risk-benefit assessment processes will be required in order to make informed decisions about gene therapy for haemophilia. But what is needed from the community to support these decision making processes? How can we ensure equal access and opportunity to gene therapy in the future? How do we begin to try quantifying the benefits of gene therapy without focusing solely on annual bleed rates and factor levels? Listen in to hear the thoughts of our experts in this final episode of Haemcast for 2021. Thank you to all of our listeners throughout the year for tuning in and supporting Haemcast. The feedback we have received has been amazing and confirmed that it serves as a valuable resource for the community. If you want to help supporting us, please do leave us a review and rating on the platform you listen on e.g. Apple podcasts, Spotify and be sure to share Haemcast with your colleagues and friends. Engage with us on Twitter @Haemnet
December 20, 2021
Universal precautions; not gloves and aprons but health literacy and shared decision making ft. Jonathan Berry. NHS Improvement, Personalised Care Group
In this episode of Haemcast, hosts Dr Kate Khair and Luke Pembroke discuss the topic of health literacy with Jonathan Berry from NHS England and NHS Improvement. The challenge of educating and engaging patients about their care within bleeding disorders is a pressing issue receiving increasing attention as we begin to see new treatments being developed. There is an unmet need to improve health literacy levels for people living with long-term conditions such as haemophilia. Jonathan shares the challenges, concerns and potential solutions he has come across whilst working within the NHS Improvement, Personalised Care Group. What did you think of this episode? Chat with us on Twitter @haemnet!
October 07, 2021
Some is good, more is better | physical activity in haemophilia feat. Melanie Bladen & Ruth Elise Matlary
In this episode our host Paul McLaughlin, physiotherapist at The Royal Free Hospital London, speaks with fellow expert physios, Melanie Bladen (Great Ormond Street Hospital, London) and Ruth Elise Matlary (Oslo University Hospital, Norway) about physical activity in people with haemophilia. Our guests explore the potential barriers, worries, facilitators and outcomes when someone with haemophilia does or does not decide to be active due to their condition, as well as discussing what has changed now in an era of minimal bleeding whilst on treatment and if we really are on the edge of "normality" when it comes to physical activity. If you enjoyed this episode, please check out the other Haemcast episodes, follow/subscribe and leave us a review if you're using Apple or Google podcasts to listen. You can also connect with us on Twitter @haemnet and let us know what you thought about the episode.
September 06, 2021
Trauma and Pain Memories in Haemophilia
In this episode we are joined by clinical psychologist, Sarah Whitaker and physiotherapist, Anna wells from the Basingstoke Haemophilia Centre. What are the potential traumatic experiences someone with a bleeding disorder may experience? How may these experiences create lasting pain memories? Is PTSD not recognised or acknowledged as much as it should be in the bleeding disorders community? Find out in this episode of Haemcast who discuss the topic of trauma, pain memories and PTSD within the bleeding disorders community. Be sure to follow/subscribe to Haemcast! Follow us on Twitter @Haemnet and visit www.haemnet.com
June 22, 2021
The Birds and the Bleeds | Sex and sexual health in the bleeding disorders community
In this episode of Haemcast, host Dr Kate Khair and specialist nurses April Jones and Jo Swidenbank discuss the issues people within the bleeding disorders community face when it comes to sex, sexual health and identity. Our guests also explore the the challenges, as well as solutions, for when it comes to speaking with patients about these issues surrounding sex. Thank you to our sponsors who make Haemcast possible. Be sure to follow/subscribe to Haemcast and follow us on Twitter @haemnet.
June 01, 2021
Celebrating International Nurses Day 2021 with the haemophilia nursing community
In this episode of Haemcast, hosted by Dr Kate Khair, we hear from haemophilia nurses around the world to celebrate International Nurses Day 2021. From Europe to Canada and all the way to New Zealand, our guests share their thoughts on what makes a good haemophilia nurse, how they have adapted in the past year and what the future of haemophilia care might look like. #InternationalNursesDay. Thank you to our sponsors who make Haemcast possible. Be sure to follow/subscribe to Haemcast and follow us on Twitter @haemnet. www.haemnet.com
May 12, 2021
World Haemophilia Day | How the UK Community Adapted to Change
"Adapting to Change, sustaining care in a new world." That's the theme for World Haemophilia Day this year and in this special episode, Luke Pembroke, Haemnet Comms Officer, speaks with members of the UK Bleeding Disorder community about how they have had to adapt to change during the past year in response to the challenges faced. Featured guests include: Haemophilia Nurse Specialist Debra Pollard on conducting clinics from home whilst shielding Patient advocate and research fellow Rich Gorman on moving across the country and not yet meeting his new haemophilia team in person! Haemnet's master of "creative interference" gives us the low down on Project Phoenix (www.haemnet.com/phoenix) Nurse Specialist, April Jones tells us about the challenges the Newcastle Haemophilia team faced with the centre having to relocate Lead Clinical Nurse Specialist, Wandai Maposa recollects the ghost town of Tooting mid-pandemic and how scary it was to see members of his team redeployed to ITU. Thank you to our sponsors who make Haemcast possible.
April 17, 2021
Women Bleed Too! - Dr Abdul-Kadir, Dr van Galen & Naja Skouw-Rasmussen on the WGBD Principles of Care and more
Following the release of the European Principles of Care for Women and Girls with Bleeding Disorders last month, Haemnet's Director of Education, Debra Pollard discusses why this is an important step for the community with expert guests, Naja Skouw-Rasmussen (EHC), Dr Rezan Abdul-Kadir (Consultant Gynaecologist, Royal Free London) and Dr Karin van Galen (Consultant Haematologist, UMC Utrecht). Our guests also dive in to the challenges and barriers women within the bleeding disorders community face, from receiving diagnosis to effective treatment, and what more needs to be done to improve outcomes for these women. You can view the WGWB Principles of Care webinar here. Be sure to share this Haemcast and make sure you're following or subscribed so you don't miss out on future episodes! Follow us on Twitter - @haemnet
April 08, 2021
Complexities and Conundrums in Consent w/ Dr Nicola Curry and Dr Keith Gomez
How can genetic testing complicate consent in clinical practice? When is genetic testing appropriate for a patient? Is it time to rethink what we mean by consent for people with haemophilia and bleeding disorders? In this Haemcast, host Dr Kate Khair is joined by Dr Nicola Curry (Consultant Haematologist, Oxford Haemophilia and Thrombosis Centre) and Dr Keith Gomez (Consultant Haematologist, The Royal Free Haemophilia Centre, London) to discuss these complex issues and more. If you have any questions, comments and suggestions about Haemcast, drop us a line - email@example.com Be sure to follow @Haemnet on Twitter, subscribe/follow Haemcast wherever you're listening. www.haemnet.com
March 09, 2021
We don't ask. They don't tell - Pain and haemophilia (Part 2)
In part 2 of this Haemcast focusing on pain in haemophilia host Dr Kate Khair, uncovers some of the ways people with haemophilia manage their pain, with expert physios Nathalie Roussel (University of Antwerp, Belgium) and Paul McLaughlin (The Royal Free Hospital, London, UK), as well as exploring the hopes for the future of pain management and research within haemophilia. Be sure to subscribe and follow Haemcast so you don't miss future episodes as they're released. Find out more about what we do at www.haemnet.com. Follow us on Twitter: www.twitter.com/haemnet
February 22, 2021
We don't ask. They don't tell - Pain and haemophilia (Part 1)
The first ever Haemcast!... and the first in a two part episode exploring the hot topic of 'pain' within haemophilia. Our host, Dr Kate Khair, is joined by haemophilia physiotherapists and pain experts, Nathalie Roussel (University of Antwerp, Belgium) and Paul McLaughlin (The Royal Free Hospital, London, UK) to discuss mechanisms of pain, the challenges in assessing and managing pain, and think about the ways we as treaters can improve outcomes for patients. Be sure to subscribe and follow Haemcast so you don't miss Part 2 and future episodes. Find out more about what we do at www.haemnet.com
January 19, 2021