Developing a Cerebral Palsy Register for Wales



Rachel Lindoewood, Consultant Paediatrician and Clinical Director

Jenny Carroll Consultant Physiotherapist


Powys Teaching Health Board and Bobath Children’s Therapy Centre Wales


This Bevan Fellowship project aims to establish the first Cerebral Palsy Register for Wales, increasing knowledge of the condition and improving the quality of life for individuals and their families.


Background


The cerebral palsies are the most common cause of physical disability in early childhood, affecting around three per 1000 births. The 2018 report, Each and Every Need, highlighted deficiencies in care provided to this group of children. The primary recommendation of this report is for improved data collection and national-level datasets to help our understanding and management of services for this population.


Aims


This project aims to address the lack of available data at a national level by developing a Cerebral Palsy Register for Wales.


The nature and extent of the population of people with cerebral palsy in Wales is unknown, only estimated based on data from other countries. This makes planning for this group of people inaccurate.


This register, the first national CP register in Great Britain, will enable planning and delivery of targeted quality services for people who have cerebral palsy. Research has shown that having a comprehensive CP register reduces the number of incidents of contracture, hip dislocation and the need for surgery in children who have cerebral palsy.


The register will give clinicians and academics the research evidence and information they need to design and improve services. The project aims to improve participation and quality of life for individuals with Cerebral Palsy and their families.


Challenges


A key challenge for the success of the Cerebral Palsy Register for Wales is to ensure ownership and integration with current systems in Wales.


To address this, the project steering group consists of 32 individuals, including an individual who has cerebral palsy, 3 parents, professionals from 16 different disciplines, 3 professionals with register experience and membership from each health board in Wales and from the NHS Wales Informatics Service (NWIS).


The size and breadth of the task is also a challenge which has been addressed by dividing tasks between 5 subgroups: Informatics, Dataset, Strategy, Stakeholders and the Powys Pilot subgroup.


Outcomes


The project will provide a population register of people who have Cerebral Palsy in Wales. The standardised data (using the recommended SNOMED-CT coding) will increase our understanding of the extent and nature of the population, informing service planning across the lifespan and during transitions.


This will improve care and lead to improved health outcomes and quality of life. An important aspect of the register is the involvement and engagement of individuals who have cerebral palsy and their families in its development.


Next steps


The next steps for the project are:

  • To develop an information leaflet and online survey to share with families known to Powys Teaching Health Board and Bobath Children’s Therapy Centre Wales.

  • To hold stakeholder events and focus groups in Powys in February 2019 in the pilot health board. These will then be rolled out across Wales.

  • Development of forms to submit data that link with current systems.

  • Creation of a data repository held by NWIS.

  • A launch event at the Senedd in March 2019.


The Bevan Fellowship experience has been excellent and has opened doors for us and made connections that have proved vital.Rachel Lindoewood





Part of cohort Bevan Exemplar Projects 2017-18


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