Neuromuscular Physiotherapy

Neuromuscular physiotherapists treat disorders that affect muscles, resulting in weakness, joint tightness and functional problems. This may be due to a problem affecting the muscle, the nerves that supply them, or the junction between the two.

The Neuromuscular Physiotherapy Service at Great Ormond Street Hospital (GOSH) sees children and young people with a wide variety of disorders, which vary range in age of onset and severity and are usually inherited. In some cases, the conditions are acquired.

At GOSH, the neuromuscular service assess, diagnose and manage conditions through a multidisciplinary approach. The physiotherapists work very closely with other specialist teams (including the Doctors, Nurses, Dietician, Speech and Language Therapist, Social Worker and Family Therapist) giving a holistic approach to care.

A referral for an assessment by the neuromuscular team is made by a child’s GP, Community Paediatrician or Paediatric Consultant from another hospital.

• Duchenne and Becker muscular dystrophy (DMD and BMD)
• limb girdle muscular dystrophies (LGMD)
• spinal muscular atrophy (SMA)
• peripheral neuropathies such as Charcot–Marie–Tooth (CMT)
• congenital myopathies
• congenital muscular dystrophies (CMD)
• congenital myasthsenic syndrome (CMS)
• neurogenic arthrogryposis and other neurogenic conditions
• myotonic dystrophies
• other problems – mitochrondial, inflammatory, or storage disorders

Neuromuscular conditions affect function, walking, movement, strength and the child’s ability to play and develop. This is where a physiotherapist can help.

The neuromuscular physiotherapists are specially trained and experienced in working with children who have neuromuscular conditions. They will assess and advise on the management of most of the children who are seen by the neuromuscular doctors, and can help with diagnosis, identify problems and look at changes over time.

The aim of physiotherapy is to maximise function, maintain independence, mobility and strength, prevent pain and encourage involvement in normal activity. The physiotherapist has an active role in monitoring changes and minimising secondary complications such as contractures and curvature of the spine (scoliosis). Regular assessments ensure any problems are anticipated or detected as early as possible.

Some children with neuromuscular conditions can have difficulties with their breathing. The team can provide a respiratory physiotherapy assessment and treatment to help clear the lungs of secretions and reduce the effort of breathing. If your child requires on-going management they may need to attend a physiotherapy respiratory follow-up clinic.

Your child may have a separate assessment with a research physiotherapist if they are part of a trial. These assessments vary according the different trials.

Regular assessment is an important part of the overall management of children of all ages with neuromuscular disorders. Most of the children will be seen every 6–12 months depending on diagnosis, severity, rate of change, or sudden change, or due to unforeseen circumstances such as acute illness or following a fracture.

Most children are seen in an outpatient setting but children may be assessed on the wards, either during treatment to assess effects, or to help determine a diagnosis. Some children may come for a period of rehabilitation.

The physiotherapy assessment will consist of discussions with parents or carers and your child about any changes or concerns, local therapy input and their level of function and mobility. Each assessment will be adapted to each child’s needs but is likely to include an assessment of their muscle strength, joint range of movement, posture, walking and functional ability.

Following assessment, an individualised treatment programme can be provided and the assessment can help plan further treatment or investigations. Your physiotherapist will liaise with existing local physiotherapy services, provide specialist advice on orthoses and splints, exercise, activity and play, give advice on type and frequency of stretching and splinting regimes to assist with this and make onward referrals where appropriate.

Treatment programmes and advice can include:

• activity advice
• stretching exercises where appropriate
• hydrotherapy exercises in wate
• walking practice, gait re-education, overall mobility problems
• orthotics
• splinting
  • serial casting
  • soft casting/splints
• KAFO (knee ankle foot orthoses) rehabilitation
• chest physiotherapy, including breathing exercises and sputum clearance techniques
  • prevention and management of scoliosis
  • ensuring and maintaining good posture and seating
• mobility and wheelchair advice.

You might find the following websites for support groups and further information useful.

• SMA Support UK
• Action Duchenne
• Muscular Dystrophy UK (MDUK)
• Treat NMD
• For physiotherapists – Association of Paediatric Chartered Physiotherapists (APCP)