System | Summary of review points | Key multi-disciplinary team members |
---|---|---|
Nutrition | Nutritional status | Dietician |
Bulbar function | Safety of the swallow; appropriateness of the oral route for feeding | Speech and language therapist |
Gastro-oesophageal reflux | Symptoms of gastro-oesophageal reflux disease (GORD) GORD investigations and treatment | |
Infection | Frequency of infections, hospital admissions and intravenous therapy Review culture results Prophylactic antibiotics: consider starting if >3 admissions in last year; consider stopping if no reduction in infective episodes in last year Nebulised antipseudomonas therapy: consider starting if serial colonisation; consider stopping if no improvement in last year Venous access Check immunisations are up to date, including seasonal flu | |
Drooling | Severity of drooling Need for treatment Adverse effects of treatment | |
Posture | Degree of kyphoscoliosis Need for surgery Seating | Spinal surgeon Occupational therapist |
Chest physiotherapy | Provision of inpatient and home physiotherapy Appropriateness of home suction, home saline nebulizers and cough assist devices | Physiotherapist |
Sleep | Symptoms of sleep disturbance and obstructive sleep apnoea. Consider need for sleep study | |
Epilepsy | Frequency and severity of seizures Respiratory sequelae of seizures and anticonvulsant medication | |
Home oxygen | Evaluate need for home oxygen, continued appropriateness and use | |
Symptom control | Consider need for low-dose opioids for control of breathlessness | Paediatrician and community nurse with expertise in palliative care |
Advanced planning | Family-held personal resuscitation plan |