Chair: Dr Niamh Lagan, Consultant Paediatrician S.I. Neurodisability

Speakers:
1. Dr Fiona McElligott Consultant in Palliative care
2. Clinical Nurse Specialist Neurodisability
3. Clinical Care Co-ordinator for children with life limiting conditions
4. Dietician
5. Parent representative

Objectives:
This instructional course aims to equip clinicians and allied professionals with a practical, evidence-informed framework for recognising, assessing, and managing gastrointestinal (GI) dystonia and feeding intolerance in children and young people with severe neurological impairment (SNI).
By the end of the session, participants will be able to:
1. Identify key mechanisms and clinical features of GI dystonia and feed intolerance in SNI.
2. Apply multidisciplinary assessment and management strategies that optimises comfort, nutrition, and quality of life.
3. Recognise the importance of collaborative communication with families and caregivers in shared decision-making.
4. Integrate palliative and neurodisability principles into holistic care planning for this complex population.

Target Audience:
This course is designed for physicians (paediatric neurologists, neurodisability consultants, palliative care clinicians, gastroenterologists), allied health professionals (dietitians, speech and language therapists, clinical nurse specialists, occupational and physiotherapists), and other members of multidisciplinary teams involved in the care of children and young people with severe neurological impairment.

Background and summary
Gastrointestinal dystonia and feeding intolerance are increasingly recognised as major sources of distress for children with SNI and their families. Symptoms such as retching, pain, feeding intolerance, and autonomic instability are often multifactorial, overlapping with dystonia, visceral hyperalgesia, and medication effects. Despite the high prevalence and impact, these symptoms remain under-recognised and inconsistently managed.
This instructional course brings together expertise from palliative care, neurodisability medicine, dietetics, specialist nursing, and family experience to explore practical, real-world approaches as utilised in a tertiary hospital.
The faculty will share current evidence and/or consensus-based best practice, and lived experience to highlight how multidisciplinary collaboration can improve comfort, feeding tolerance, and overall quality of life through case based discussions. The course will also address the emotional and ethical dimensions of feeding decisions and symptom management, with an emphasis on person-centred, compassionate care.

Course format:
• Welcome and Introduction
• Utilisation of multiple clinical cases with use of a voting platform (e.g. slido) to aid audience participation and discussion
• Key objectives:
o Understanding the Pathophysiology and Clinical Spectrum of GI Dystonia in SNI Nutritional and Feeding Strategies: Balancing Comfort and Nutrition
o Optimising Feeding and Comfort through Positioning, Communication, and Oral–Enteral Coordination
o Recognising and Responding to Feeding Distress
 Focus on quality of life
 Shared decision making/ zone of parental discretion
 Parental and family perspective
• Interactive Discussion and Q&A

The session will encourage audience participation, case reflection, and sharing of international recognised guidelines, evidence base and local practice examples to enhance practical learning.