https://www.gosh.nhs.uk/wards-and-departments/departments/clinical-specialties/neurodisability-information-parents-and-visitors/clinics-and-services-related-wolfson-neurodisability-service/sturge-weber-and-neurocutaneous-syndromes-service/roles-of-therapies-within-the-sturge-weber-service/

Roles of therapies within the Sturge-Weber service

Children with Sturge-Weber service (SWS) may have a range of disabilities and associated problems which can vary in severity. Some children have development within the average range, some above or below. The outlook varies greatly from child to child, depending on the severity of the symptoms and how well they are controlled.

Your child will receive a multidisciplinary assessment involving some or all of the below disciplines to assess their current developmental abilities, areas of strength and need for intervention/and or monitoring.

To assess:

Receptive Language – a child’s understanding of another person’s language

Expressive Language – a child’s ability to use language and find the right words to express themselves

Speech sounds/articulation – a child’s ability to use the right speech sounds in every word.

We will make referrals when specialist assessments are required for stammering and reported feeding/swallowing difficulties.

To assess our child’s thinking skills (cognition) and see if they are in line with what may be expected for your child’s age. Also, when indicated they will undertake assessments of learning (reading, writing, maths), social communication, memory, attention, planning and organisation skills and mental health. The service does not have capacity for intervention, but will provide recommendations and refer to local services as appropriate.

To assess your child’s functional difficulties affecting independence and participation in home and school life. The occupational therapist may also assess your child’s upper limb use/difficulties (fine motor skills) impacting on function, personal care or play skills. Depending on the age of your child the Occupational Therapist (OT) will provide specialist advice and recommendations to the community OT about specialist equipment (splinting), advice on therapeutic interventions and will refer to social care OT and or wheelchair services as required for home adaptations and specialist home or mobility equipment.

To assess your child’s gross motor difficulties impacting on functional mobility, activity levels and participation in family/school life. Depending on the age of your child the physiotherapist will provide specialist advice and recommendations on positioning and handling, postural management (including need for specialist equipment and orthotics) and developmentally appropriate gross motor activities.

We will also provide specialist advice and recommendations on ongoing management; this can include onward referrals to local services as required for delivery of ongoing therapy provision and support including:

- Community therapy teams as part of local child development services

- Educational services

- Social services occupational therapy (OT)

- Orthotics

We will liaise with your community teams where necessary to support your child’s overall management and advice on ongoing therapy provision which will be carried out by your local therapy services.