Delivering family-focused multi-disciplinary care for children with spasticity

Aims:

• To reduce the impact of disability on children with CP and their families by providing joined up services which are family focused and easier to access.
• Managing the risk of hip dislocation in this population.
• Embedding the process of hip monitoring within a wider cerebral palsy and postural management pathway to reduce comorbidity and improve outcomes for this target population.

Objectives:

• To map the current service in order to create an evidence based postural management care pathway for non-ambulant children with CP.
• To create a network of professionals, parents, service users, researchers and to organise an annual meeting to share good practice, training and devise service improvement.
• To implement a comprehensive hip surveillance pathway for children with cerebral palsy GMFCS III-V, who are at greatest risk of hip dislocation.
• To have a dedicated hip surveillance radiology clinic with consistent positioning, measurement and reporting of Reimers hip migration percentage (HMP).
• To develop joint orthopaedic, paediatrician and physiotherapy clinics and communication network.
• To develop skilled therapy assessment and delivery of postural management equipment and effective training for parents and carers.
• To begin development of local spasticity clinics, moving towards physiotherapists delivering botulinum toxin injections to improve access and communication and reduce travelling.
• To audit compliance against the guideline in order to improve service delivery.

Children and families with cerebral palsy have multiple professionals in their lives and have many competing appointments and therapy regimes. Families tell us that they would like coordinated services and appointments to bring decision making into one place and ensure person centred focus in planning and evaluation of treatment.

The local Cerebra research unit has a family faculty where expert parents have become involved in shaping research. These parents were keen to help build a network of informed parents and professionals to share their experiences, in order to make a better seamless service. Hip disorders are common in children with CP and are directly linked to the ability of the child to bear weight and walk. The risk of hip dislocation is up to 64% in children with the most severe physical disabilities.

Research literature demonstrates that routine surveillance of this patient group enables earlier informed interventions which prevent hip dislocation or larger surgical interventions. The NICE CG145 helped focus our developing care pathway and since then the early implementation of CPIP assessment and hip surveillance has helped to standardise the outcome measurement and reporting of risk of developing hip dislocation.

Before this project began, hip x-rays were requested by the paediatrician or orthopaedic surgeon but not following a surveillance schedule. The quality of the radiograph was often poor due to the child’s spasticity and positioning while the radiograph was being taken. This meant that Reimers HMP could not be calculated reliably and the lack of planned surveillance did not allow tracking of hip dysplasia or early intervention to prevent dislocation. This resulted in situations where children had late detection of dysplasia requiring significant surgery and even developing dislocation where salvage surgery is known to have poor outcomes. Families also reported little time to make decisions and plans with holistic understanding of the issues.

Across Devon and Cornwall we created an annual Neurodisability Network Day which included talks from parents or service users which highlighted the lived experience of families with a child who has CP. Talks were given by a range of professions and researchers with expertise in this field, as well as workshops to share good practice and develop innovation. The desire for more joined up services lead us to develop joint postural management clinics at two levels.

Locally we, with families, identified those who would benefit from a joint physiotherapy and paediatric review and also commenced clinics with orthopaedic surgeon, paediatrician and physiotherapist. This allowed joint assessment of the child together with the parents and any others they wanted included (such as other carers and education staff), making clinical decisions together and producing a combined report from the appointment.

More recently the implementation of CPIP has now created a structure to enable physiotherapists to routinely assess the child and highlight risk reporting to the parent, paediatrician and orthopaedic team when ‘red flags’ are highlighted during an assessment. This assessment tool is also being implemented as part of the evaluation post interventions. A hip surveillance database was created overseen by the paediatrician. Radiology allocated a specialist radiographer and separate hip surveillance clinic with longer time slots. The radiographer was trained to position the children to optimise the pelvic position in order to ensure the HMP measure would be more reliable and has proactively developed information for families and sought feedback. The physiotherapy team undertook IRMER training in order to be able to request the hip x-rays in line with the surveillance protocol. More recently both the paediatrician and physiotherapist have been involved in the early implementation of CPIP. The physiotherapist undertook the ‘train the trainer’ CPIP training and has trained the Physiotherapists in all the teams across Devon and Cornwall, to carry out the CPIP assessment.

This has now been put into place to deliver comprehensive specialist assessment and hip surveillance in line with NICE CG145. The NICE guidance highlights the importance of timely information giving to help families make informed choices about their care. Initially this was done with postural management workshops where parents were invited to join and informal coffee morning with the physiotherapists.

No costs were incurred as the workshops were run within special schools and counted as part of normal service delivery. The videos which we went onto make were costed at £500 per 5 minute video, however the company waived the fee as they felt that this would be a resource that would be welcomed by the wider health community, and can be accessed by the general public and other health organisations through our Trust website.

We found improved uptake of postural management clinics with flexibility around child sickness (higher in this clinical group).

• Parents demonstrating being empowered to speak with other professionals across sites and support sharing of appropriate information.
• Parents including other professionals (such as care and education staff) at clinic appointments and not only attending but speaking at network days to voice their experiences and shape the program.
• Parents involved in steering clinical research into interventions for children with CP in the Trust.
• Staff thinking further ahead (proactive vs reactive balance) in care/ planning.
• Earlier implementation of conservative treatment such as postural management equipment, orthotics or serial casting.
• More robust transition planning (in line with NICE NG43).
• Shared standards allowing improvement in equity of access and streamlining of local and specialist services with network discussions to save multiple face to face appointments for families.
• Earlier commencement of children with cerebral palsy/ spasticity on the hip screening pathway (n=58) with reduction risk of children with CP with hip dislocation currently 5% compared to 28% expected risk.
• The NICE audit tool showed the physiotherapy service was not achieving the standard around delivery of episodes of intensive task-focused active-use therapy (Appendix 2). This led us to redesign the service and create opportunities for intensive therapy blocks for these children. Training for parents and carers in postural management was only partially achieved, and this informed our decision to develop alternate ways of delivering this information from a group workshop, to more accessible 1:1 training and videos that parents and carers can access at their convenience.

Delivery of strength training programmes was initially highlighted as amber and training was put in place within the team to enable full compliance. The re-audit demonstrated full compliance with the guideline.

We highlighted to services and commissioners:

• The complexity of services for GMFCS III – V.
• The specialist nature of needs including orthopaedic interventions for children with spasticity.
• the needs of GMFCS level I & II at present unmet but more visible of planning.

• The original mapping of services included parents, health professionals and commissioners. This led to the establishment of the desired care pathway and Network which continues to evolve. Involving parents has helped to ground the work in reality and the memorable talks delivered by parents and young adults who use the services have helped drive change.
• Uptake of postural management workshops was poor and yet another demand on parents busy lives. In response to this we involved parents and children in making four videos about postural care. This allows parents and carers to access the information at their convenience.
• Parents experience of the dedicated radiology service has been very positive and the reporting of HMP has been more thorough and consistent. The team have shared their experiences with colleagues across the region.
• Through the wider team parents have felt able to give useful feedback about difficulties with access for disabled children.
• The implementation of the joint postural management clinics has enabled improved clinical decision making. Parents have found this joined up work much more effective.
• CPIP assessment has started to highlight earlier intervention using spasticity reducing medications, physiotherapy or botulinum toxin. The physiotherapist has trained in therapeutic injection of botulinum toxin and is working with the specialist orthopaedic surgeon to develop local outpatient injection clinics using local anaesthetic to improve access to this treatment.
• The physiotherapy audit tool for NICE CG145 (Appendix 2) helped to improve the delivery postural management training for carers and parents eventually leading to the creating of the training videos.
• By networking, using common standards (NICE, CPIP and SEN code of practice) and family voice we have enabled service changes and education through local improvement programmes within a present situation of significant financial constraint and in a sustainable way.