Spinal Muscular Atrophy
Care at Home

Expert nurse-led homecare for children and adults living with Spinal Muscular Atrophy. Tracheostomy care, ventilator management, PEG feeding, and full clinical support for SMA Types 1, 2, and 3 — across England, Wales and Scotland.

CQC Rated Good Paediatric SMA Specialists Ventilator & Tracheostomy 24/7 Urgent Referrals

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SMA Care at Home

Spinal Muscular Atrophy is a genetic neuromuscular condition causing progressive muscle weakness. The severity of clinical need depends on the SMA type — from the critical respiratory dependency of Type 1 infants to the moderate mobility and care needs of adults with SMA Type 3.

With advances in disease-modifying treatment — including nusinersen (Spinraza), onasemnogene abeparvovec (Zolgensma), and risdiplam (Evrysdi) — many children with SMA are surviving longer and with greater function than previously. This means more children living at home, in school, and in their communities — requiring expert clinical nursing support to do so safely.

SMA Type 1: The most severe form — children typically require tracheostomy, invasive ventilation, and PEG feeding. These are not standard homecare tasks. Our nurses are trained to manage the complete clinical profile of SMA Type 1 at home.

SMA types we support:

  • SMA Type 1 — severe, early onset, ventilator dependency

  • SMA Type 2 — intermediate, wheelchair user, NIV/cough assist

  • SMA Type 3 — mild to moderate, variable clinical needs

  • Adults with SMA — managing long-term complex needs

Let's Talk

Clinical Care Our Nurses Provide

Respiratory & Airway Management

  • Tracheostomy care and suctioning (SMA Type 1)
  • Invasive ventilator management — 24/7 where required
  • Non-invasive ventilation (BiPAP/CPAP) for SMA Type 2 and 3
  • Cough assist device management and airway clearance
  • Emergency airway management
  • Oxygen therapy and saturation monitoring
  • Liaison with respiratory teams and SMA specialist centres

Nutrition, Positioning & Daily Care

  • PEG and NG feeding — administration and tube care
  • Safe oral feeding support where applicable
  • Specialist positioning and postural care
  • Pressure area prevention and management
  • Personal care adapted to SMA clinical profile
  • Complex medication administration including disease-modifying treatments
  • School and community setting support (paediatric)
  • Implementing physiotherapy and OT programmes

Who Commissions SMA Packages

NHS — Paediatric

  • Children's Continuing Care teams and ICBs
  • Children's hospitals and PICU/NICU step-down
  • SMA specialist centres (GOSH, Sheffield, Manchester)
  • Community paediatricians and respiratory teams

NHS — Adult

  • ICBs commissioning CHC packages for adult SMA
  • Adult neuromuscular services
  • Hospital discharge teams
  • Transition from paediatric to adult CHC services

Private & Compensation

  • Self-funding families
  • Personal Health Budget holders
  • Case managers for SMA cases with associated legal proceedings

Transition Planning

  • Young people transitioning from paediatric to adult services
  • Coordination between CCA and adult CHC teams
  • Educational transition support

Frequently Asked Questions

  • Yes. SMA Type 1 children with tracheostomy and invasive ventilator dependency require round-the-clock nursing. We build dedicated, trained teams of registered nurses for SMA Type 1 packages — with all staff signed off as competent to the child's specific equipment and protocols before care commences.

  • Yes. We support children with SMA in mainstream and specialist educational settings — providing clinical cover throughout the school day. We liaise with school nursing teams, SENCOs, and specialist provisions to ensure the child's clinical needs are met safely in the educational environment.

  • Disease-modifying treatments are changing the SMA trajectory significantly — many children are gaining or maintaining function that previous generations did not. However, these treatments do not eliminate the need for clinical homecare in Type 1 and many Type 2 children. We work closely with SMA specialist centres to ensure care packages reflect the individual's current clinical status — which may be different from the 'textbook' SMA picture.

  • Yes. Transition for young people with SMA is a high-risk period. We work with both Children's Continuing Care and Adult CHC teams to ensure continuity — keeping the same care team wherever possible, updating care plans to reflect changing needs, and coordinating with adult neuromuscular services.

Refer an SMA Patient

Our clinical team is available 24 hours a day for paediatric and adult SMA referrals, discharge planning, and urgent care enquiries.

Phone (24/7)0330 678 3014

Email: bookings@a24direct.co.uk

WhatsApp: 07723 503 976

Call 0330 678 3014 Email a Referral

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CQC Rated Good  |  Established 1996  |  A24 Group Ltd