Haemcast

In this episode of Haemcast, we speak to our very own Dr Kate Khair following her Lifetime Achievement award at EAHAD 2024.

Tune in to hear about Kate's journet into nursing, the first patient she met with a bleeding disorder and how they influenced her career, and the many years dedicated to researching the lived experience of those with haemophilia and bleeding disorders. You don't want to miss out on hearing from one of the undisputed legends of the bleeding disorders community.

In this episode, host Luke Pembroke (Director of Community Engagement, Haemnet) sat down with Len Valentino (P2C Chief Executive Officer; and NBDF President & CEO) and Teri Willey (P2C Managing Director) to hear more about the Pathway to Cures; a venture philanthropy fund created specifically to accelerate the development of cures across all inheritable blood and bleeding disorders.

In this episode we commemorate World AIDS Day 2023. Host, Dr Kate Khair is joined by contaminated blood scandal campaigner and The Haemophilia Society UK's LGBT Ambassador to discuss the impact HIV and AIDS has had on the bleeding disorders community. Mark generously shares his personal experience growing up with haemophilia from receiving no treatment, to then receiving contaminated blood products.

After taking to the skies to pursue his dream of working in the air travel sector, Mark hung up his cabin crew uniform to become one of the leading community advocates, campaigning for justice of those affected by contaminated blood and serving as the worlds first recognised LGBT Ambassador in the hemophilia and bleeding disorders world.

In this episode, Director of Community Engagement, Luke Pembroke, and Director of Research, Kate Khair spoke with community advocates Sunny Maini and Hannah Yarnalll.

Sunny and Hannah share their experiences of living with von Willebrand Disorder (VWD), their journey in to the world of advocacy and tell us about their latest venture establishing the VWD working group through The Haemophilia Society UK.

From the development of standardised tools, their benefits and limitations, through to the challenges and changes we face in assessing quality of life for people with haemophilia and bleeding disorders as we move in to a new era of treatment. Tune in to hear from a leading expert in the field

In this episode of Haemcast, host Dr Kate Khair speaks to Psychologist Dr Sylvia von Mackensen about her journey in to haemophilia and bleeding disorders focusing on quality of life assessment.

Qualitative research is increasingly challenged to think creatively and critically about how accounts of lived experience might be collected, curated, and shared. Historically it could be said that qualitative research has been somewhat disregarded and undervalued. However, in recent years the potential of qualitative research in helping to better understand the lived experience of those with rare diseases has grown. As specialists in this form of research, the Haemnet team have championed these approaches through many of our studies and projects in hemophilia and bleeding disorders.

We remain curious about how this field continues to evolve and adapt. In this episode, Haemnet's Director of Community Engagement, Luke Pembroke discusses the creative approaches to qualitative research Dr Rich Gorman (Research Fellow and Social Scientist, Brighton and Sussex Medical School) as and his colleagues experimented with in recent years, employing the power of the arts to uncover unique insights in to the lived experiences of those affected by rare genetic conditions.

Show notes:

They say old age isn't so bad when you consider the alternative...

In this episode, host Luke Pembroke (Haemnet's Director of Community Engagement) is joined by community members Dr William McKeown (Geriatrics SpR, Belfast, Northern Ireland) and Randall Curtis (Advocate and Researcher, California, USA) to discuss the potential challenges the bleeding disorder community are set to face with an increasing ageing population.

What co-morbidities can we expect to encounter more often and how should these be managed in people with haemophilia? How can a bleeding disorder exacerbate aspects of frailty? What should we prioritise as a community as we venture into the relatively uncharted territory of ageing people with bleeding disorders? Tune in to the full episode to hear our guests' thoughts and insights on how those with bleeding disorders can age well.

In this International Women's Day episode of Haemcast, two influential women leaders in the community, host Dr Kate Khair and Dawn Rotellini of the National Hemophilia Foundation (USA) discuss the challenges and barriers to diagnosis, treatment and care for women with bleeding disorders. Dawn shares her personal story and the obstacles she had to overcome as a haemophilia mum and person with a bleeding disorder, as well as discussing her advocacy efforts and achievements at a national and global level.

Do we need to rethink the multidisciplinary care model in the context of treating women with bleeding disorders? Have we moved past the classification of "just carriers"? Would we do better to consider individuals at a bleeding phenotype level as opposed to bracketing people in to categories based on purely factor levels? Listen in to this episode to hear Kate and Dawn's thoughts on these issues.

"Shared decision making" has quickly become the new phrase bandied about at event and conferences within the haemophilia community. But what does shared decision making in haemophilia and bleeding disorders really look like? In this episode, our host Dr Kate Khair deep dives in to this topic with Dr Len Valentino, CEO at the National Hemophilia Foundation (USA), exploring what shared decision making really means in this community and why, in this evolving treatment landscape, this is drawing so much focus and attention. There is a need to shift away from the paternalistic healthcare professional and patient relationship, and to engage patients in a dialogue about their treatment, care and goals. This is at the heart of shared decision making. 

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In this episode of Haemcast, host Dr Kate Khair speaks with Nicola Redfern, former UK General Manager and Northern European cluster lead at bluebird bio and experienced leader in the biopharmaceutical industry, having worked across oncology, rare diseases and ATMPs. We discuss the considerations and challenges when it comes to access of gene therapies, and what the bleeding disorders community can do to ensure these innovative treatments are accepted by payers and become a real option for patients.

Professor Graham Foster (Professor of Hepatology at Queen Mary University of London and clinical lead for Hepatology at Barts Health) joins us in this episode of Haemcast to discuss considerations around liver health within the haemophilia and bleeding disorder community,  provides an insight in to why the liver must be carefully monitored during gene therapy trials, and suggests how we might improve and tailor these monitoring techniques to improve patient experience... as well as sharing some useful advice and consideration on how we can ALL take care of our liver. 

In this episode of Haemcast, our host Dr Kate Khair speaks with Alison Dougall, President of the International Association for Disability and Oral Health (iADH) and Consultant/Professor in Special Care Dentistry at Dublin Dental University Dental Hospital about all things oral health and haemophilia and bleeding disorders. In this episode:

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. 

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. 

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.

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.

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.

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.

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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.

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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.

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"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:

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 - hello@haemnet.com 

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. 

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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.