SCI Care: What Really Matters

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In this episode of the podcast, in partnership with Wellspect, host Lisa Beauchemin talks to her colleagues Katherine Fernandez and Dr Lawrence (Larry) Vogel about bladder and bowel management in paediatric spinal cord dysfunction.
They discuss physical health alongside social health and lifestyle factors that need to be considered, especially when working with children and teenagers. Being a teenager is challenging enough without the disruption of incontinence. Ultimately, the team aims to help their patients achieve a high quality of life and strive for independence as early as possible.
Dr Vogel also highlights the importance of anticipatory guidance, letting patients and their families know what will happen as their child ages and develops.
We hope you enjoy this episode of the podcast.

The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.

You can follow us on Twitter and LinkedIn
The SCI Care: What Really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".

Contact us directly with any questions or comments at [email protected]

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Claire Lomas MBE welcomed over 900 participants to the recent 62nd ISCoS meeting in Edinburgh. She shared her moving story from her life before a spinal cord injury to the difficulties she faced immediately after to the triumphs she enjoys since she grieved the life she lost and accepted the life she now has, ultimately changing her future. In this episode. Rober Buren shares his own challenges and triumphs as Canada's first paraplegic Iron Man and continues the conversation with Claire.

We hope you enjoy listening.

The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.

You can follow us on Twitter and LinkedIn
The SCI Care: What Really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".

Contact us directly with any questions or comments at [email protected]

Send us a text

In this inspirational episode, we have the privilege of hearing the unique patient perspective of a surgeon who operated on SCI patients prior to his own spinal injury. Mr Mohammed Belal is a consultant urologist who has treated many SCI patients during his medical career. In 2021 he had a cycling accident and sustained a spinal cord injury which saw him undergo many months of rehabilitation and treatment. He has recently returned to work as a surgeon. Here, he speaks with Dr Jane Duff, a consultant clinical psychologist at the National Spinal Injuries Centre, Stoke Mandeville Hospital, and ISCoS President-Elect, Dr Ali Jamous about his journey.
A positive mental outlook has been fundamental to Mr Belal’s ongoing recovery and rehabilitation, which he categorises into three key strands: the physical, mental and spiritual. Goal setting and managing expectations have also been important, recognising that rehabilitation is an ongoing process and that new challenges will arise along the way. His experience as a surgeon has clearly helped with this in terms of his in-depth knowledge of SCI care, but also in his disciplined and driven approach to recovery. He explains that one can maintain a positive mindset by seeing challenges as problems to be solved rather than insurmountable obstacles.
“That's the beauty of about life. It's the challenges that really keep you going.”
Mr Belal also shares his honest views on the challenges of accessing community care and rehabilitation services after discharge, and the frustrations around this. He explains how clinicians can help by giving patients a sense of purpose with clear goals for rehabilitation. His own approach as a surgeon has certainly changed when it comes to understanding the profound changes and uncertainty his patients are dealing with.
“It's certainly made me a better doctor”.
This episode is a must for both SCI clinicians and patients as Mr Belal shares his vital insights and take-away messages from both sides of the experience. In particular, he highlights the importance of communication and empathy; managing acceptance and uncertainty with a positive outlook; and, crucially, holding on to gratitude and hope.

The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.

You can follow us on Twitter and LinkedIn
The SCI Care: What Really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".

Contact us directly with any questions or comments at [email protected]

Send us a text

'It’s about making sure that the family can see how that's going to fit in with their child for the here and now, but also I'm very much thinking I've got to hand this child on to adult services with two good kidneys. It's about not just the continence, but keeping the kidneys healthy into adulthood.' – Dr Allison Graham

Welcome to our next podcast instalment as we continue to cover the topics that matter within the care of SCI, engaging experts from all over the world.

In this episode host Catharina Cziczkat of Wellspect, Germany is joined by Jens Larsson from Skånes University Hospital SUS, Sweden and Dr Allison Graham of Buckinghamshire Healthcare NHS Trust, UK, to discuss the challenges of bowel and bladder care in patients navigating from childhood to becoming independent teenagers and adults. What’s the best way to go about this when dealing with sensitive areas such as catheterisation?

To help us, our panel share their knowledge and experience, explaining how we make the transition to adult services workable for families with children in need of bladder and bowel management. What can we do to help teenagers to become independent, removing the responsibility from parents and placing this onto themselves? How do we motivate them? Building relationships and trust with families is key to achieving better quality of life in the short term, as well as working towards improving function and kidney health in the long-term. The ultimate goal is to ensure the transition from child to teenager is as smooth as possible, giving patients the tools and knowledge to empower them whilst avoiding complications.

'It's an embarrassing subject and, It's an area that you don't as a child, or even as a parent want to talk about. But you need to build that confidence with the family and, make them comfortable in talking to you about it as well. That's something I think is important, to give the families and the child as much information as possible.' ~ Jens Larsson

Our panellists wholeheartedly agree that by working closely with the child's family whilst directly involving the child, treating our patients as individuals, and sharing all the available information, the process can be effectively managed, ensuring the transition from child to young adult to an independent adult is successful.

Contact us directly with any questions or comments at [email protected]. You can also join the conversation on social media @ISCoSMeetings and @WellspectHC. And we hope to see many of you in person at the ISCoS 61st Annual Scientific Meeting this September in Vancouver.

If you enjoyed this podcast, please rate, review and subscribe with the podcast provider of your choice. This show is brought to you by ISCoS - you can follow us on Twitter

The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.

You can follow us on Twitter and LinkedIn
The SCI Care: What Really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".

Contact us directly with any questions or comments at [email protected]

Send us a text

Welcome to the first episode of series 3 – SCI Care: What really matters. Our guest host is Maria Bergsten from Wellspect, who are partnering with ISCoS for this series of podcasts sharing stories, discussions and insights into bladder and bowel management as a critical part of SCI care – improving patients’ quality of life and feeling of dignity. This episode focuses on the different techniques and needs of catheterisation, with a particular focus on women, which is pertinent with the release date of this episode being on International Women’s Day.

Our guests this episode are Carin Bergfeldt, a Licensed Occupational Therapist and course leader at Aleris Rehab Station in Stockholm, Sweden, and Dr Letitia Graves, Assistant Professor at the University of Texas Medical Branch at Galveston, USA. Carin has over 20 years of experience in the care, rehabilitation and treatment of patients with spinal cord injuries and other neurological injuries/diseases, sharing her knowledge and expertise in spinal cord injuries, transfer technics, pressure ulcers and technical aids with patients, caregivers and clinicians. Dr. Letitia Graves worked as a nurse on a spinal cord injury unit for several years before transitioning into academia and research. She serves on the Nursing Special Interest Group of ISCoS, part of whose mission is to increase awareness of specialised spinal cord injury, nursing care and to increase education and resources for individuals living with spinal cord injury, their family and caregivers, as well as other clinicians globally.

We discuss the importance of independence and integrity for patients and how to promote and increase these, and our guests share their tips and tricks for successful self-catheterization. We also look at the increasing use of suprapubic catheters in patients with bad hand function and the correlation between their use and an increased risk of UTIs. Self-catheterization is challenging for both male and female patients but can be particularly difficult for women, both physically and emotionally. The therapist or clinician plays a vital role in increasing their patients’ confidence and crucially in pushing them to go further in their rehabilitation. Another key part of their role is in working with patients to find and create the right tools and instruments to make their lives easier. As we hear from Carin, this can involve a huge amount of invention, creativity and collaboration with patients, and this is one of the parts of her job she enjoys the most. For both Carin and Letitia the ultimate goal is to give their patients as much independence as possible, depending on their level of injury and circumstances.

For more advice and useful tips on coping with everyday challenges with a spinal cord injury go to www.spinalistips.se, or contact us directly with any questions or comments at [email protected]. You can also join the conversation on social media @ISCoSMeetings

The opinions of our host and guests are their own; ISCoS does not endorse any individual viewpoints, given products or companies.

You can follow us on Twitter and LinkedIn
The SCI Care: What Really Matters podcast aims to provide valuable insights and the most up-to-date information for those providing care to people with spinal cord injury (SCI) worldwide. The vision of the International Spinal Cord Society (ISCoS) is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally".

Contact us directly with any questions or comments at [email protected]