SCI Care: What Really Matters – Details, episodes & analysis

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• Helen Smith (Ms) Consultant Clinical Psychologist 
• Joe Robinson, Group member and co-facilitator, freelance artist and co-author of "The Very Alternative Guide to Spinal Cord Injury" 

SCI is a rare condition, not well-understood outside specialist centres. Those who walk again are seen as "lucky" and not "disabled". In fact they have invisible disabilities, which take a heavy toll. Spending time with others with similar experiences, can help with their frustration and isolation. The literature has tended to focus on physical and surgical considerations, not lived experience.

A group was created in 2010 at our SCI Centre, providing Peer Support and information (invited speakers). It has been evaluated with positive results, and not required significant resources. Members derive benfit from contributing as well as receiving. It was presented at SCI conferences, but so far has not been replicated, except for two recent versions in the voluntary sector.

Not all ambuplegic people suit a group approach, but members report feeling better-informed to manage their unique challenges, better in mood, and supported by others who understand.

 If you have any questions regarding this podcast, please contact Helen Smith at helen.smith35@nhs.net

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

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Dr. Michael G. Fehlings
discusses the future of stem cell therapies for spinal cord injury
with Intissar Mohcine & Asma Belarbi, high-school students from the Netherlands. 

Key points:

1) Stem cells are a promising therapeutic approach to repair the damaged spinal cord following injury.

2) Preclinical studies have shown exciting improvements in spinal cord structure and motor function.

3) A number of issues still need to be resolved before stem cell therapy can be successfully utilized in the clinical setting.

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

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ISCoS OT and PT SIGs SCI Pre Workshop Day

“Implementation of WHO:s Rehab 2030, Package of Interventions”

How do we implement available research into interventions in our daily work?

Speaker details:

Guillermo Gomez, Physiotherapist from Buenos Aires, Argentina and Johanna Wangdell OT, PhD. Department of Occupational therapy and Physiotherapy at Sahlgrenska University hospital

Gothenburg Sweden

Current Chairperson of the International Network of Spinal Cord Injury Physiotherapists (SCIPT) and the ISCoS Physiotherapists Special Interest Group.

Current ALME – SLAP Vice chair (Latin American and Caribbean SCI Association).

What the workshop is:

Educational day with focus on implementation of research and to share clinical practice.

OT and PT have separate programs before lunch and a joint program in the afternoon.

Objectives:

To update and train participating colleagues on different topics and aspects dedicated to the management of people with SCI, oriented towards the rehabilitation work of OT and PT, and how do we implement available research into interventions in our daily work?

Our aim is not to be scientific, but to focus on implementing science. We will use WHO:s Package of Interventions as our framework to highlight that material as well.

Why you are doing it:

The main idea was born from a need of the OT and PT executive committees to hold a pre-day workshop for all colleagues attending the ISCOS annual congress to improve their knowledge in the field of SCI.

We hope that this can attract more OT/PTs to the scientific conference as well as making ISCOS more relevant for OT/PT. We would like to see this workshop as a complement to the scientific congress.

Why people should join:

Take advantage of this pre-workshop day to increase your experience and knowledge of the work of OT and PT within the rehabilitation team for people with SCI. We have speakers from different regions of the world who will cover the most interesting topics, assistive technology, tenodesis grip, functional arm-hand training, electrical stimulation, community based therapy, trunk muscle function, guidelines, wheelchair, among other…

The participants who do research will still present their research at the congress and we create a forum for discussions on how to implement new knowledge in the pre workshop.

When:

Gothenburg, October 8th, 2025. 9.00-17.30

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

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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".

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

Contact us directly with any questions or comments at iscos@associationsltd.co.uk

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The International Spinal Cord Society and Wellspect present a transformative discussion on changing care perspectives for individuals with spinal cord injuries, featuring leading medical experts Dr Charalampos Konstantinidis from the National Rehabilitation Centre and Dr Christina-Anastasia Rapidi from the General Hospital of Athens. Host Kristijan Kesinovic guides the conversation through critical aspects of rehabilitation and long-term wellbeing, with particular emphasis on bladder management during both acute and chronic phases.

These experts share valuable insights on transitioning from initial care to long-term independence, including crucial discussions on sexual health and fertility options. Dr Konstantinidis addresses fertility possibilities for both men and women, whilst Dr Rapidi emphasises the importance of comprehensive rehabilitation approaches. Their discussion underscores the vital shift from viewing people as perpetual patients to recognising them as individuals with full life possibilities, highlighting the importance of specialised healthcare support throughout their journey.

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

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In this episode, host Rima Kamal (Wellspect) explores the complexities of caring for children with spina bifida with Dr Fahad Alyami, Head of the Saudi Paediatric Urology Group and Associate Professor at King Faisal Specialty Hospital and Research Centre in Riyadh. The discussion delves into the critical aspects of paediatric care for those with spina bifida, from early intervention to adolescent transition. Dr Alyami explains the importance of bladder management from birth, the challenges families face in daily care routines, and the crucial role of multidisciplinary healthcare teams.

The conversation addresses key aspects of paediatric care, particularly the transition from childhood to adult healthcare services. Dr Alyami emphasises the significance of specialised spina bifida clinics where multiple specialists can coordinate care under one roof, highlighting the development of transitional urology as a subspecialty to bridge the gap between paediatric and adult care. The discussion concludes with inspiring success stories of individuals with spina bifida who have gone on to lead fulfilling lives, including having families of their own, demonstrating how proper medical care and support can positively impact life outcomes.

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

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Contact us directly with any questions or comments at iscos@associationsltd.co.uk

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In this episode, released to coincide with World Spina Bifida Day, host Anders Tennby (Wellspect) explores the challenges and opportunities in improving life quality for those with spina bifida. Joined by experts Hanna Gabrielsson from Sweden and Pierre Mertens from Belgium, the discussion delves into the complexities of this congenital disorder. Gabrielsson, a registered nurse with a thesis on adults with spina bifida, explains the condition's medical aspects and the challenges individuals face, including the need for consistent self-care and the impact of cognitive impairments. Mertens, president of Child-Help International and father to a daughter with spina bifida, brings a personal perspective, highlighting global disparities in care and support.

Resources Mentioned

• Guidelines for the Care of People with Spina Bifida (spinabifidaassociation.org)
• International Federation for Spina Bifida and Hydrocephalus (ifglobal.org)
• NOSCOC Special Interest Group on Spina Bifida (noscos.org)
• Child-Help International (www.child-help.international)
• MMCUP (Swedish national quality register for spina bifida) (mmcup.se)

Note on Prevalence Rates: During the podcast, there was a discussion about the prevalence of spina bifida. It's important to clarify that prevalence rates can vary significantly between regions and depending on whether prenatal diagnoses are included. In Sweden, for example, the estimated prevalence before prenatal screening is approximately 5 per 10,000, but the actual number of children born with spina bifida is considerably lower, at about 5-10 children per year (or 1 per 100,000 newborns). Globally, reliable incidence studies are lacking, especially in the Global South where many cases may not reach hospitals. Reported figures vary widely, from as high as 14 neural tube defects per 1,000 births in some areas to as low as 1 in 10,000 in others. This wide range highlights the need for more comprehensive and standardised global data collection on spina bifida prevalence.

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

Contact us directly with any questions or comments at iscos@associationsltd.co.uk

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As anticipation builds for the 63rd Annual Meeting of the International Spinal Cord Society, Professor Micheal Fehlings shares his excitement with Dr Stolwijk-Swuste, a Rehabilitation specialist and Associate Professor at De Hoogstraat Revalidatie. 

Our hosts invite the spinal cord community to this unique event, located in a charming and inspiring venue: A Room with a Zoo at Flanders Meeting & Convention Center, Antwerp.

This 3 day event unites leading experts in spinal cord injury care and research to share groundbreaking advancements and innovative solutions in the pursuit of bettering the lives of individuals living with, or caring for those with a spinal cord injury. 

To learn more about our interactive programme and to register your place, please visit: https://iscosmeetings2024.org

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

Contact us directly with any questions or comments at iscos@associationsltd.co.uk

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The Vison of ISCoS is to "facilitate healthy and inclusive lives for people with spinal cord injury or dysfunction globally". Partnership and collaboration is key in helping us to realise this vision. We are delighted that we have been able to partner with Wellspect to deliver, in addition to a number of webinars and podcasts, educational support for the ISCoS International Regional Symposia.

In this webinar, the 2nd ISCoS International Regional Symposium -  Sharing world knowledge for practical advancements will be discussed by the panel:

Dr. Ronald Reeves, MD , Chair of the ISCoS Education Committee, 

Dr. Francois Theron, MBChB, MMed,  Chair of the ISCoS Affiliated Societies and Networks Committee 

Professor Moon Suk Bang, MD, Phd, Seoul National University College of Medicine and Chair of the Local Organising Committee.

The panel highlight the work of the Korean Spinal Cord Society and spinal cord Injury care in Korea and discuss the work of the ISCoS Regional Symposia Initiative to promote multi-disciplinary, integrated care and training, the comprehensive care for which ISCoS is well known, within affiliated societies and regional networks.

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

Contact us directly with any questions or comments at iscos@associationsltd.co.uk

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Welcome to the future of Spinal Cord. 

In this episode, our hosts Dr. Fehlings and Professor Anthony S. Burns welcome us to a new era of ISCoS’s flagship journal, Spinal Cord. 

Conceptualised in 1963, Spinal Cord is a specialised, international journal that publishes peer-reviewed manuscripts, to showcase powerful medicinal insights and support those within the SCI community. 

Appearing monthly, both online and in print, Spinal Cord invites contributions on spinal cord anatomy, physiology, injury and associated disease management, and importantly, improving the quality of life for those living with a spinal cord injury. 

As this unique, interdisciplinary journal progresses into its next chapter, Dr. Fehlings and Professor Anthony S. Burns have initiated an open call for Associate Editors to join their team of esteemed doctors, researchers and practitioners in bringing this journal to life. 

To apply for this role, please visit: Call for Application: Associate Editors of Spinal Cord | Spinal Cord (nature.com)

Or to learn more about Spinal Cord, please visit: Journal Information | Spinal Cord (nature.com)

SCI Care Guidelines

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

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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".

Partnership and collaboration are key to achieving this vision. Our episodes include expert guests, persons with lived experience and representatives from the industry supporting SCI care.

We invite you to:
ISCoS 2024 will take place in Antwerp, Belgium 22 - 25 September 2024

Contact us directly with any questions or comments at iscos@associationsltd.co.uk

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

Contact us directly with any questions or comments at iscos@associationsltd.co.uk