Aim

Children with complex, life long conditions need support from an extensive range of services. This project aimed to establish multi professional / agency, child centred care through the development of a pathway that could be used as a model for future pathways.

Methodology

 A consultation process with stakeholders confirmed that current practices were perceived to be inequitable, inconsistent, poorly coordinated and provided little information about available services and access to them.

A project group considered short and long-term solutions that required either additional resources or changes in working practices, including the impact on families and services. Those solutions not requiring additional resources were implemented immediately and improvements monitored.

A draft ICP with a flow chart and explanatory criteria was subjected to rigorous consultation and a pilot study set up to include those children who met the inclusion criteria and who were referred over the next year.

Satisfaction levels of families and staff were monitored through interviews and Patients Stories using a comparator group. Patient and parent involvement will continue through focus groups.

Audit was through variance tracking to identify the need for changes and inform future developments.

Results

 Further consultation to ensure agreement and ownership resulted in the ICP now including all children with complex developmental difficulties up to age 4 years, rather than for Profound Cerebral Palsy aged 0 to 3 years as originally planned.

The ICP is operative, using agreed protocols to manage each stage, including information sharing and consent factors.

An information package has been compiled.

Children are now referred to a central referral point and seen within 4 weeks for joint assessment by the appropriate services and a care plan agreed with parents and then implemented.

The Variance Tracking has been audited and presented locally identifying that some minor clarification was needed and ongoing training necessary in completing tracking forms.

Evaluation

A focused, child centred pathway has been established with evidence of continuing stakeholder satisfaction.

The process was cost neutral because of improved service planning, less duplication of services and changes in skill mix and practices and might result in cost saving in the future.

Audit via variance tracking showed that the pathway is fit for purpose.

The pathway has provided an early indicator of the special educational needs of these children and has facilitated LEA planning for school placements.

The model has been confirmed as a means of ensuring good practice and has been used, where appropriate, to develop other pathways

Reflection

The numerous learning opportunities around pathways development to achieve improvement in patient care have been welcomed by all agencies involved.

Variance tracking was found to be a useful and easily managed tool for audit purposes and was a valuable learning experience for all - including those not directly involved in the project.

The extensive consultation process has proved to be invaluable, as has the continued consultation throughout, so that all those involved have ownership of the process and are enabled to influence change and further development as appropriate.

Improved communication channels will encourage and support joint working in the future. There is an increased awareness amongst professionals involved of the need to adapt and extend individual roles to provide a more child focused response to complex needs.

Further action

Continue to audit via variance tracking.

A continuation ICP for these children from 5 to14 years has been developed and has started to be implemented by those involved in Special Schools in Swansea.