The National Institute for Clinical Excellence (NICE) published guidelines (updated Nov 2016) for the Management of Spasticity in Children and Young People. The guidelines recommend that a management programme is developed and implemented in partnership with the child or young person and their parents which is individualised and goal focused.
Ongoing monitoring of the child or young person’s condition should be made for review of the response to treatment, worsening of spasticity, the development of secondary consequences of spasticity e.g. pain or contractures, and for the need to change individualised goals.
Physical therapy (in this context, physical therapy encompasses occupational and physiotherapy) is recommended by NICE and this includes strength training and the use of task-focused active-use therapy such as constraint-induced movement therapy and bimanual therapy to enhance manual skills. It is recommended that this intervention is provided as an intensive programme over a short period (e.g. 4-8 weeks).
Further evidence for this pathway has been obtained from the Cerebral Palsy Upper Limb Pathway (CPUPS), the Swedish care pathway for children with cerebral palsy. CPUPS encompasses the hip surveillance protocol which has been adopted in Scotland as CPIPS (Cerebral Palsy Integrated Pathway Scotland). CPUPS also includes a care pathway for management of the upper limb of children with cerebral palsy. This pathway includes routine measurement of upper limb range of motion and monitoring of occupational performance and is carried out by Occupational Therapists across the country.
The Scottish OT Cerebral Palsy and Neurodisability Network has spent the past 3 years working on an upper limb management pathway. This work has included reviewing the current literature and collating information about available assessment and treatment options. The work of the Network is ongoing and will be published on the NES Clinical Knowledge Publisher and NES Managed Knowledge Network. This work has helped to inform the development of this pathway.
To reduce the impact of spasticity and abnormal tone on the long term function and wellbeing of young people with Neurodisability by:
Children who are referred to the community paediatric Occupational Therapy service will be offered a First Contact appointment within six weeks of the referral. The purpose of this appointment is to determine the concerns that the family and child have and to direct them to the best pathway to meet their needs.
Children who are identified as having abnormal tone in the upper limb and are over the age of 5 or who have previously been known to the service will be directed to the Upper Limb Clinic. Where possible the date of the next clinic will be provided at the First Contact Appointment. Some children will be referred to the Occupational Therapy service as a Priority 1 and will not attend a First Contact appointment. If the child is not already known to the Upper Limb clinic, they will first be allocated to an Occupational Therapist and inclusion in the clinic will form part of their care plan and ongoing management.
Initially the Upper Limb Clinic will be conducted by the child’s named therapist and the Advanced Practitioner in Neurodisability. Band 3 and 4 staff will assist in the setup of the room and preparation of assessment forms, and elements of the assessment etc. The intention is that in the future the Upper Limb Clinic will be organised and run locally by a band 6 Occupational Therapist who has an interest in Neurodisability. This therapist will be supported by the child’s named therapist and/or Band 3/4 staff.
There are 4 parts to the clinic:
If the child is all or mostly within green values of the CPUPS traffic light system and there are no functional concerns then no intervention will be provided and the child will be reviewed according to the protocol outlined in Follow up (see below).
If there has been a change in ROM or functional concerns have been identified, the next step will be dependent on the child’s MACS level; children with a MACS 1-3 follow one pathway and children with MACS 4 and 5 follow another, as detailed below.