Case Study: Supporting an Adult Living with Spinal Muscular Atrophy to Receive Specialist Complex Care at Home

Direct Homecare provides complex care services designed to support individuals with complex and life-limiting conditions in the comfort of their own homes. As a nurse-led provider, we combine clinical expertise with a personalised approach, ensuring each client receives compassionate, high-quality care tailored to their needs.

This case study focuses on Mirinda, an adult living with Spinal Muscular Atrophy Type 2 (SMA) who, due to the complexity of her condition, requires a highly specialised package of care. Despite her extensive clinical needs, she continues to live independently at home, actively involved in decisions about her care and supported by a dedicated team providing round-the-clock assistance.

Background

Due to the progression of her condition, Mirinda requires long-term tracheostomy ventilation and enteral feeding to support her breathing and nutritional needs. She also presents with complex respiratory failure, renal complications, and multiple medication allergies, requiring careful and consistent clinical management. Despite these challenges, Mirinda remains cognitively aware, communicates clearly, and actively directs her care.

Mirinda lives independently at home and is supported by a skilled, nurse-led team providing 2:1 care around the clock. The focus of her care is to deliver safe, consistent, and person-centred support while maintaining her independence, respecting her choices, and enabling her to remain engaged in her daily life and relationships.

Goals Identified

• Maintain respiratory stability and a clear, patent airway at all times.
• Safely manage long-term tracheostomy ventilation and secretion clearance.
• Ensure safe, consistent nutrition, hydration, and medication administration.
• Reduce the risk of infection and unplanned hospital admission.
• Preserve dignity, privacy, and personal choice in all aspects of care.
• Enable meaningful participation in family life, social activities, and the community.

Staff are trained and competent in deep suctioning, cough assist therapy, ventilator monitoring, and emergency airway management. Proactive respiratory interventions, including chest physiotherapy and nebuliser therapy, are used to minimise infection risk and maintain airway clearance.
Nutrition and hydration are primarily delivered via a PEG with JEJ extension using a continuous feeding regimen. Care staff follow strict protocols for feed preparation, tube flushing, medication administration, and monitoring tolerance.
All medication is administered by trained staff, with strict adherence to allergy awareness, controlled drug procedures, and escalation protocols.
Personal care routines are delivered with sensitivity, clear communication, and respect for privacy, ensuring comfort while reducing pain and anxiety.
Outings are carefully planned with trained staff, specialist equipment, and emergency preparedness, enabling safe participation without unnecessary restriction.

• Proactive ventilation and airway management has reduced emergency incidents and maintained optimal lung function.
• Enhanced clinical oversight and strict protocols has minimised complications and hospital admissions.
• A person-centred approach has preserved choice and control over all aspects of daily life.
• Expert clinical care, combined with respect for autonomy, has enabled her to thrive at home and within her local community.